ph update!

Spring Catch-up

2011-03-08T11:26:00.002-07:00

I am sorry! I fail! I haven't talked to you in months! I will try to get back to blogging. I think it is because I just didn't feel anything was new, different, exciting, or just worth blogging about. I mean little things, wonderful things, have happened, but I didn't feel they were important to you!

So let's see, what has happened? Well I took a class last semester at Mesa. Philosophy. It was a nice class! I think a good one for me to start with! Did well enough too. I got a C. Mom was appalled, I think she believed I could do so much better. True... I have been able to do better... but my brain is out of practice and I do not care about grades. A C means nothing to me when I have nothing I can do with it. I am not looking to start a career, so it doesn't matter what I get. What matters is that I am doing it. This spring I took 2 classes. One was health and wellness and the other was an activity class. I still don't feel that I should have to take either of them, but the state requires it. They were just 1/2 semester classes and so they are done. Well, the health and wellness is done. I just need to turn in my exercise log for my activity class.

I had planned on going to the gym every day this week. I just walk for 20 minutes on the elliptical and then do some stretches and such. But I got sick. Yeah, I was exposed a little over a week ago and thought I had made it out of the woods. NOPE!! Damnit. I am doing my best to hydrate, and eat every now and then, but my body isn't retaining anything. I just hope I don't have this too long, I am afraid to loose too much weight.

Just before Christmas I went gluten free. I was having so many digestive problems I was miserable. Man has that helped!! It took me a while to really get into the swing, but now I am all there. Ant gave me 3 cookbooks that have saved my life! I have also found a blog I love to get ideas and recipes from. http://glutenfreegirl.com/
She apparently has a cookbook out too. If I get a scale I will have to get that book too! She uses weight to measure ingredients, not cups.

Niki has come home from Alaska, as have the girls. Her and Joe got a divorce and I hate his mother. I am glad she is home though. I think things will go better than others expect it will. She has support here that she didn't have there.

I also moved my room. I (well, mostly Pat) painted the room down the hall and moved me and my shit over! I am loving it! I think I will be happier here, I can grow plants in my room!

At my last doctor's visit we found that my lupus is VERY active (we knew that) and that my PH is not doing well. We are hoping that the latter is just a fluke. I will go back mid April and hopefully things will show that it was false. Cross your fingers! I am now on Medicare. That is both a good and a bad thing. We will see how it goes! March 1 was the start, so I have no idea yet!

So that is about it. I will leave you with 2 questions... anyone have a gluten free recipe for the girl scout Thin Mints? It is killing me to even smell them!! And... how do you keep a cat from using a raised garden bed as a litter box?

Seasonal Depression

2010-10-07T23:07:00.002-06:00

I have found that I am a sufferer of seasonal depression. No matter how good my outlook, once the fall hits I become blue. the other week I found myself thing (again) that this could be my last fall, last holiday season. I am not supposed to do that!! Today I saw my primary (back to seeing Dr Terry) and he is upping my antidepressants for this season. We will see how that goes! I am hopeful! He said that considering everything, I am doing very well. He was pleasantly surprised that things are going so well for me!
I also got my new pump!!! Tuesday I had a nurse come train me from Denver on this new CADD-MS 3 pump! It is so tiny!! The size of a small cell phone! Mom and Dan are relieved that the cord is shorter. They were always freaking about the other one getting caught on things. Now that this one straps to my belt or pocket, I don't need a long cord to account for movement. It is slightly water resistant, so I am not attached to the wall when I shower (YES!!!) and I can play in the bumper boats without fail!! Next summer I see a day of bumper boats and mini golf!!!
There was a bit of a freak out incident though... Because of differences between the pumps, the nurse had to empty, flush, then prime my line with the new concentration of medicine. Well, she gave me a bit too much, so I had an overdose. Luckily it was just a tiny bit too much, so the reaction only lasted like an hour. But it was an hour spent remembering what it was like to start the medication. It did remind me of how much better I really am doing. When I started, those side effects were acceptable, better even! Now I didn't want anything to do with them!! So I guess I needed reminding that I am a LOT better!

King Tut and Docs.

2010-09-02T10:44:00.003-06:00

Well Denver was fantastic! We went to the King Tut exhibit, stayed at my favorite hotel, and in general had a great time! This trip was just a checkup for both doctors. The rheumatologist did lab work, and says that I am having a flare. Nothing too big, joint pain and a new rash (discoid). There was talk about CREST syndrome, so now I have to do research on that. He asked if I was happy with where my symptoms were, and I said no. Depending on what the lab work says and how I feel we may try to change some medications. I go back to him in December. The cardiologist (who I see for my PH) said that my heart function and size are back to normal, and that my pressures are only slightly elevated showing mild PH! Yay!!

I start training tonight for a new program that will be beginning mid September, a mentor program. I will be contacted by patients with questions or concerns by email. The hope is that this program (there are several mentors) will be able to comfort and inform patients with new diagnosis, and of course those with not so new diagnosis.

And You Are Updated!

2010-08-11T09:23:00.002-06:00

So it has been a while. A LONG while. My bad!

A lot has happened. Mom posted that we went to Denver to have a new catheter placed. This one doesn't have the silver cuff on it. The manufacturer said that I should not be allergic to the silver cuff... but I really think that was at least part of the issue. After having this new one in for a few weeks, I am totally sure that is the cast. It already feels so much better than the last one!!

My other grandma, Eleanor Bower, passed away a few weeks ago also. It was sad, mostly because she seemed to suffer so much that last week. I am just so glad she is not suffering. So of course my dad came into town for that. It was great to see him! Just wish the circumstances were better.

Mom has big news for everyone... so make sure you call her and ask her about it! I would tell you, but I want her to!

I will be starting as a mentor for the new PHA patient and caregivers Mentor Program! It will start in the middle of September! Should be exciting, it is for new patients to have someone to email questions to and just talk to. I have also finished 2 articles for the upcoming Pathlights newsletter. I will post the link when it is available, but you will not be able to read it online until next year. HOWEVER... you can donate $15 to become a PHA member and you will receive the newsletter in print... IF you do it soon. It will be published in October.

I have been house sitting again, and I am doing ok. After my grandma died I started with a new lupus flare, that has yet to leave. I called my doctor in Denver and he got me started n low dose prednisone again, and it is helping. My heart is feeling more stable, and the pain isn't so bad. When it is time for the next dose, I am very stiff again. :( And my fibro is very painful right now. Otherwise I am good! I will go home Thursday, and I am looking forward to it! I love house sitting... but it is always good to go home! :)

I think that is enough for now, I will try to be more diligent and write more frequently. I will start school on the 23rd, so no promises!! Hahaha! Wish me luck!

On The Road Again.....

2010-07-25T21:34:00.002-06:00

So, back to Denver.
We arrived in Fort Collins yesterday. I LOVE seeing Dean!!!!! And tomorrow we will head in to Denver for the 10:30 procedure. I know Anna is anxious for the catheter to be removed from her arm. Since this is actually our 3rd port it seems like "old hat", but my stomach is still in a knot and my hands get sweaty if I think about it too much.
The new port will be made of different material, hopefully this will prevent a reaction and need for replacement. If nothing else, this is a learning process.
On the trip over we talked about the parent that won't ease up; you know, the one who nags "do you have your oxygen" every time they leave the house:) I try, I really do, but it is very difficult to not constantly worry. Anna turned 27 earlier this month, but I still fret as though she just turned 17.
Thanks for reading our blog!
Joyce

Say What?!

2010-06-29T13:03:00.003-06:00

And we had another infection! Ugh! I just got back from Denver last night. The doctors there removed the infected catheter (I requested pain meds this time!) and will put a new one in again in 3 weeks. I finally convinced them to try a different catheter. The ones they have used in the past have all had a silver anti-biotic cuff on it, and I think that is the issue. I am hyper sensitive to metals in my body... I can't even have surgical stainless steel! The manufacturer said I can't be allergic to it... but when has that stopped me?!? Haha!

So Saturday I was all set to go to a bead show, and spend some time with Joan and a friend, Paula. After my shower I did a dressing change and there was major discharge. For a few days prior the site had been sensitive, but I didn't think it was going to get infected. So Mom and I went to the ER and they did cultures and put a PICC line in my arm. That actually wasn't bad! The guy who did it was awesome at it!

The nurse had me go back in on Sunday to make sure I didn't need to be admitted before I could get to Denver. When he came in he told me that the cultures didn't grow anything. :( That is what happened the last time! With that news, Dr Bull didn't think he needed to take it out, but he still wanted to see me on Monday. Pat and I left Sunday evening and stayed with my brother.

Then Monday afternoon I went in to show Dr Bull. He palpated along the tube and got discharge and immediately decided to remove it. I asked him and my nurse to make sure they give me a little pain meds. The doctor doing the procedure didn't want to, but was told they needed to, thank goodness!!! That was so much better than the last time!!!

I am on antibiotics for 10 days, and then I have to wait another 7 days to insure the infection is gone before they can put a new line in. So, I go back in 3 weeks. Damnit.

Hunting Asparagus

2010-05-28T11:50:00.003-06:00

I meant to write yesterday, but I got busy and forgot! So I will write today.

On Wednesday Grandpa and I went to Delta. Well, first we went to Montrose to the chocolate store, then lunch in Oletha, but then we went to Delta! We put flowers up at the Peagreen Cemetery, picked asparagus, and visited Helen. I had a lot of fun! It was a tiring day, but nice!

Lately I spend a lot of my time with my kitten, but she loves to play with Princess. My garden is doing well enough, and I get lots of lettuce! I just wish the wind would go away!!

I am not sure if I have mentioned it, but I will have an article published in the fall edition of "Pathlights", the PAH Association newsletter! So go to the website and sign up for the newsletter and you will find me in the next release! They have asked that I stay on as a volunteer writer! Yay!!! If I have mentioned that I will try not to do so again!

Nothing Much

2010-05-23T20:19:00.003-06:00

So Mom thinks she is getting sick. Poor thing. I told her to stay away. Hahaha! Just kidding. Well, I really did, but I was just teasing her. I am doing a lot better. No one can really see the spots on my forehead, but I see it everyday.
My garden is doing well, as are my fish. I just wish this wind would go away! We don't live in Wyoming!!! I get my kitten on Thursday. Wednesday I go to Delta with grandpa. Tomorrow I get my blood tested. And Thursday I get evaluated for different oxygen! (means lighter tanks for me)
Eme has her 2nd birthday on the 30th.
Well, nothing very interesting, so I will leave it at that.

Continually Defeated

2010-05-15T19:54:00.003-06:00

Mom worked today, so I didn't see her until after work. I didn't do my hair today. She looks across the table to me and what does she see? Lesions from scleroderma. God damnit. I went and looked. Sure enough, I have the discoloration that is the beginning of lesions. It starts with brown spots, caused by concentration of collagen and pigment. Then the skin tightens and thickens. Defeated, that is how I feel. I should have guessed I was doing too well.

And I don't want to hear that I can handle this, that I am strong. I am running out of strength. Through all of this I have thought, at least my face isn't messed up. That was the thing to keep me going. Now I have lost that.

Bad Phone!

2010-05-12T14:24:00.002-06:00

I had a Facebook app on my phone, and didn't use it often so I decided to delete it. WELL! That caused all of my contacts to be deleted!! Argh!! Please, oh please text me or email me your phone numbers again! After I get them I will attempt to sync my phone to my computer so that I have a backup contact list! Just incase you don't know my email it is druid420@hotmail.com

I caught a nasty cold and am trying desperately to get rid of it. My nose gets so plugged up that I can't use it! And this stupid storm system rolling through is making me sore and irritating my sinuses. Other wise I am doing very well. I am so happy! I have met a wonderful guy.

My kitten is 4 weeks old, and I get to bring her home in about 2 more weeks! YAY!!!!! I am almost ready for her. Just need a litter box, and when I get her we will go pick out a collar and name tag.

Mother's Day

2010-05-09T16:10:00.003-06:00

Happy Mother's Day to all of the wonderful moms! I hope you are getting to do exactly what you want to do, or as close to it as possible!

I just thought I should take a moment and remind everyone why my mom is so wonderful. I give her grief, because he is over protective, and a bit of a smotherer (*wink*). But I know how much she cares. Every time she checks to make sure I am ok before she goes to work, or makes sure I have my gloves, or checks the bottle of oxygen, I know she is doing it because she isn't ready to lose me. And I appreciate it. I will never be able to tell her exactly how much she means to me, as there are no words to do so. I just hope she feels it.

Wind and Nothing

2010-04-28T13:36:00.005-06:00

I think Mother Nature forgot this was Colorado, and not Wyoming. I hate the wind! But at least it is warm without being hot!

I haven't really been up to too much. Monday I spent the day with Grandpa making a gnome house to cover the outlet in the front yard. See I use it for my fountain, but when Dan waters, it gets wet! Bad combination. Well, grandpa and I took several hours to make it, and mom told me that it wasn't what she wanted. Pooh. So her job is to find me a picture, or draw me a picture so I know what she wants! AND she has to tell grandpa, not me! Hahaha!!!

I have 2 lanyards to work on for a lady mom works with. But I have to find some pink cord. It needs to be round, I think fabric, and light not neon pink. This is hard!! I will be going to Michael's next week to see what I can find. Then I have to get the hardware and tools to work with it!

The article I am writing is almost done, I think. I have a little more to do, but first I have to talk to Niki and Tori. I sent the lady who contacted me a copy to see what she thinks. I hope it is what she wants! When I am done I will post a link to the article!

I have decided on the kitten I am going to get. Did I tell you I was getting a kitten? Well, Laurie's cat had kittens 2 1/2 weeks ago, and I get to have one! (I even get pick of the litter!) There are three babies and we think 2 are girls and one a boy. The one I am getting is Black with a white face, tummy, and paws, and brown and white stripes on the body. So sweet!! She is a snuggler!! The names I have picked (because we are not 100% sure on the sex) are Eir if it is indeed a girl, and Neco if it is a boy! Eir is the Norse goddess of healing and handmaiden to Frigga, like Gna (my brother's cat was named after her). Neco is Japanese for housecat.

Oh, and I have decided to cut my hair. I want to cut it at the bottom of my ears, but mom thinks that would be too short. What do you think? I want opinions. I want to get it cut by my cousin who works at EstillosII. That is where I usually go, but the lady I go to likes to leave it a bit longer than I want.

Fabulous!

2010-04-22T14:47:00.003-06:00

So the trip to Denver was wonderful! Seeing Xena, Kiki, Jamie, Antoinette, and James was so perfect! I am glad to be home. Abby and her dad gave me a new bed!!! (Thanks so much!!!!) Today I have spent a lot of my time re-arranging my room and getting everything where I want it. I needed a break, so I got online! Haha!

My echo yesterday showed that the pressures were only slightly elevated, and the size is in the normal range! (now you can cry, jump for joy, or do whatever it is that you need to release that pent-up anxiety!) They said they are so pleased with my progress and that they were not expecting it to be this dramatic!

It took us forever to leave the hospital yesterday. We were there until 6pm. My nurse was concerned with how far the cuff of the catheter was sticking out of my chest, and a surgeon she grabbed said it needed to be replaced. My doctor said it was fine and had an X-ray to make sure. The X-ray said it was placed in the correct spot, so there was no need to replace it. The cuff that is out is the antibacterial barrier, and I have possibly figured everything out! I remember being told that silver is used in the cuff because it is antimicrobial, but I am allergic to silver! SO!!! This means that if it is silver, my body has been pushing the cuff out, and I have been having rashes and itching and redness because of this reaction! My nurse is looking into what it is made of, and I will be doing the same.

Also, I need to research the different congenital heart defects, because the doctor suspects that is PART of the PH. If I stay stable for the next 2 to 3 years, they would plan on doing surgery to fix this. This means I am doing well enough that they are comfortable enough to do a heart surgery in a few years! (this is a good thing) It would be a minor invasive surgery, in that they do it microscopically through a series of right heart catheters.

So there was some fantastic news this week, along with some that was not good or bad. Yay!!

My bad!

2010-04-20T11:12:00.002-06:00

I am so sorry! I thought I had blogged since that last one, but I didn't!!

So, the sinus infection isn't REALLY a sinus infection, but it is close. It is still here, and I am still trying to get rid of it. The ENT dr thought that it is being caused by my sinuses being inflamed, so we are trying to remedy that. ... we are STILL working on it.

I am in Denver. Colo Sp. to be exact! Oh am I having a blast!! I think we may be going bowling today! More on this subject to come another day.

At the Rheumatologist yesterday, we found out that I have a very aggressive form of lupus. We are still needing to find out what "agressive" means. Is it like an aggressive MS (rapidly progressing)? We also learned that less than 10% of all lupus patients have this form. AND I am headed towards Scleroderma. That doesn't really change things, just gives the direction. Now it is time to learn more about that.

I have been asked by the PHA to write an article!! (OMG!! who thought I was a writer?!?) I had posted a question, about talking to others about this disease, and answering the questions children ask without lying and in a way they understand. So yay!! If this happens, I will post a link to my article! (Still in shock!)

Tomorrow I will visit my PH doctor and get an echo. I will let you know how that goes!

Oh yeah, I have found that my "alone time" is very vital to my demeanor. I get snippy and childish if I am surrounded by people for too long, go figure.

Ugh.

2010-04-05T13:24:00.001-06:00

I have a full fledged sinus infection. And the antibiotics I was given have now caused me to have an allergic reaction. A rash, fever, and lupus flare. I fell like shit. Everything hurts, especially my face and back.

Dad, Easter, and Snow

2010-04-02T14:19:00.004-06:00

I had a great time with my Dad! He left this morning, and I hope his trip goes well!
We did a lot of different things. Lets see...
He didn't get in until almost midnight. Saturday we hung out with Kristine and Eme. Sunday Kissy, Eme, Dad, and I all went to Hotchkiss to visit my Aunt, Grandma, and Cousin. That was a lot of fun. Grandma seemed to be doing pretty well that day! We all took pictures, so I will post them when I get them. Monday I think we went to see Grandpa, took Easter decorations to Holly's and Grandma's graves. They are all ready for spring! Tuesday I took everyone to lunch and Dad took us all to dinner. In the afternoon Dad and I went to Bookcliff Gardens. They have the thyme I need, but no chamomile and no clove pinks! They will not have water lilies until May, so I need to see if anyone else will have them before then. After that we went to Kohl's with Aunt Jeannie and Grandma. That was fun too! Wednesday Dad hung out with Kissy, Eme, and Joe through the morning, and I think they went to the mall to the playplace. It was supposed to be a hiking day for them, but it was WAY windy and cool! After Therapy, Dad and I went shopping for an Easter basket for Eme. A ball, Barbie, bubbles, fruit chewies, and Goldfish! Then after dinner we dyed Easter Eggs to hide. Then Thursday we hid the eggs (twice!) for Eme, she got her basket, and we spent the day together. I had to leave early because I was tired, so I am not sure what they did for dinner and after!

On Wednesday mom took Dan and I to a conference-thingy for adaptive technology. Stuff that helps people do things that are difficult. Some of the stuff there was intended to help people who were severely disabled, but a lot of it was good for me! It was a bit long, my butt hurt by the end! but it was nice.

My lettuce has sprouted!!! I also have (I think!) a lemon tree sprouted!! I say I think, because I can't remember where I put it, and where I put the gourd I planted!! They are inside, and I will transplant them when it is time. Next week? I can't remember..

Mother Nature was a bitch yesterday!! That was the meanest April Fools prank EVER!!!! I can't believe she made it SNOW!!! And it was hard at times! Thank goodness she stopped at a prank!

Well, I think that is all for now. I will be back later!

It is Here!!

2010-03-21T16:34:00.003-06:00

Spring! Do you feel it? Because I do! I have been waiting for this for a while now. But... I also understand that soon enough I will be whining that it is too hot. Spring and fall need to last longer! 4 months of Spring, 4 months of Fall, and 2 months each of Winter and Summer.

I hope all had a fantastic St. Patrick's Day! I had fun, went to therapy and made Irish Soda Bread! Grandpa and I have been to see the baby chicks. I have also planed my lettuce! (No, it isn't too early, and yes, I am sure) I have my garden ready, am planning what I will put in it, and even have started some sprouts. I am going with lettuce and herbs. I have sprouted sage, rosemary, and savory and will be getting thyme, clove pinks, chamomile, and a few other herbs. I am waiting to see if my basil and oregano and strawberries made it. We will be cleaning my fountain out and getting it ready here withing a day or two. The fish are inside until April. I am sure that they will be warm enough now, but it is March in Colorado.. no guarantees. The lilies didn't make it through the winter.

My Dad is coming to visit this Friday! He will be here until the 2nd! We plan on visiting Grandma and everyone, so I will be calling you! In April I will be going to Denver for more appointments. Mom and I will be staying with Xena and her family! I am so excited! She is too!!! These appointments should go well. I am not having any problems, that I am aware of. I had an allergic reaction to the dressing again, so I am on my third kind, but it is going REALLY well! My depression seems like it is better. I think I am always going to have a bit of one, but it will be manageable. I haven't felt like I have been doing anything of note, so I haven't written.

I have managed to see people I haven't seen in a long time though! I saw a few people I used to work with, and that was really nice! I also got to reconnect with a good friend from school! It is odd, I wonder why all of a sudden I am running into people. It is good, they all seem to think I look a lot better, so that is good. I just get the feeling like there is a reason I am finding them now. There are two possible reasons, both of which feel like they could be right. The first, is that I need to start reconnecting, that I am doing well enough that I need my friends. The second is that there is something coming that I will need to feel this support. Both of these possibilities do the same thing, but one is obviously upbeat while the other is more pessimistic.

Well, that is the extent of the excitement in my life right now. I will write again and update everyone on my exciting life! Haha!!

Where is Spring?

2010-02-25T13:25:00.002-07:00

So it has been a while! Not a whole lot has been going on. I have been doing physical therapy twice a week, and I love it!! I had to switch my pharmacy for Remodulin, and that has gone well. Winter is being a baby and continues to throw little fits, postponing Spring. And my room is a mess, I need to clean it!

A few days ago, two wonderful boys (friends of my brother) had to make the hardest decision ever. Their mom had rapidly progressing MS and hadn't been well. Apparently she had a bladder infection that went to her blood and she was admitted to the hospital. She progressed from bad to worse, and they had to decide if they should take her off life support. She was divorced, her mother passed away 2 weeks ago, and her oldest son is 21. I feel so bad for these two! They shouldn't have to make that decision ever, let alone at 17 and 21!! So just a reminder.. I know you don't want to talk about it.. please write your choices down. Community has a booklet if you need help with Advance Directives. It is so important! If something happens, you can still tell others what your wishes are.

Mom has been depressed lately. She talked a little about it, but just a little. She said that at this time last year, she had been spending a lot of time with her mom and dad, and she is really missing her mom. I told her that maybe that is why I got sick, so she could spend that time close to them. She was very concerned (grandma was) about me, so her and grandpa were very close. She is also missing Tori and Bella. She spends time with Eme, so that helps.

A New Week

2010-02-10T14:18:00.003-07:00

This week has been much better! Well, so far anyways! I started my physical therapy on Monday. I knew I was weak, I just didn't know how weak!! I went again today and I go back on Monday and Wednesday too. I think this lasts for 8 weeks, and is supposed to really help. I like it so far. It isn't too hard on me, yet!

My insurance has required me to switch my pharmacy for Remodulin. I don't understand why... I just hope it goes smoothly. I have 3 more mixes before I am out. (that is 5 more days).

My new antidepressants are working very well. I feel a lot more stable!

And lastly.. I hate the groundhog. I am so done with winter!!

Nice Lady

2010-02-05T10:30:00.002-07:00

I just got off of the phone with a very nice woman. She is with my insurance company. She called to get some answers. You see, apparently I have not been paying for my medicine since July when I switched insurance companies... the medicine manufacturer has been paying it. We don't know why. I know there was one month that I needed help because I was without insurance. I told them I had insurance again... just weird. Well, she is trying to figure out the best-for-me way to bill the medicine. I wondered why I didn't have a copay with the prescription. But she actually knew about PH! I didn't have to explain anything to her!!! It was so nice!

Dissapointment

2010-02-02T15:09:00.002-07:00

It should not come as a shock to me that I have been let down by previous doctors. I knew it, or rather suspected it. But still, I am shocked! I didn't want to "know" they had let me down.

Yesterday I met with my Rheumatologist in Denver, Dr Koval. He is so nice! I like going to visit him! He did a physical exam, and noticed that I have lost the muscle that runs down the inside of the knee on both legs, part of the quad. He said the name, but there was no hope of me remembering what it was. That is not uncommon with the amount of steroids I have taken over the years. So I have to do physical therapy for that. Ok, that works. He also said that even though I was told by the bone density test that I didn't need to take calcium, I really still should. Ok. The visit ends and I come home.

I get a call this morning from him and he says that "we need to talk about some of my test results." I had been off of the methotrexate because it appeared it wasn't helping with anything, and I had been on too high of a dose. In doing so we learned that my lupus is attacking my muscles. It was hindered by the methotrexate, so I go back on it. This alone is not bad news.

Previously, between Koval, Villacress, Bull, and others, we had discussed how I had overlap. I didn't look too much into this because I knew what it meant. Turns out I also needed to know what this encompassed. I knew I had lupus. I knew I showed overlap with Scleroderma. Here is where the new muscle involvement comes in... I now have over lap with myositis. I decided to go online and find what muscle involvement was all about. This is the website I looked at. I will pull a few major points out that struck me.

Blood vessels are the most common target of injury in all of these diseases.
In myositis, weakness especially affects the hips (inability to rise from a chair or toilet seat, or to climb stairs unassisted) and shoulders (inability to lift a weight onto a high shelf or comb one's hair).
Other features less common in SLE than in SSc(Scleroderma) include: scarring of the lower portions of the lung (pulmonary fibrosis); difficulty in swallowing solid foods such as bread or meat; and heartburn or indigestion from stomach acid "refluxing" (coming back up) into the esophagus.
Women with anti-SSA sntibodies are at increased risk of having babies with "neonatal lupus." Symptoms in the infant can be as minor as a temporary lupus-like skin rash, or as serious as permanent damage to the electrical system of the heart which results in a very slow heart rate (complete heart block).

Some of this will hit some of you like a ton of brick, other parts with make no sense to others. Here is why it caught my eye. I have Pulmonary Hypertension, which is caused by the destruction of the blood vessels in the lungs. When I lived in Fort Collins, I had to cut my hair because it was both getting thin and I couldn't brush it. I have a lot of problems with stairs, at times I can't do it alone. I had a HUGE problem with swallowing not too long ago, and still have it! I have very bad reflux. I am so scared of the pulmonary fibrosis. Xena showed sun sensitivity, and Holly died because the electrical system that controlled her heart was affected by my anti-SSA antibody, her heart slowed to a stop.

So much of this occurred long enough ago that I should have been being monitored for PH!! It NEVER should have gotten to stage 4 without treatment. And now I am concerned that I have to watch for Pulmonary Fibrosis. Well, if I get that, I get on the transplant list immediately.

Again I find myself overwhelmed.

Thinking and Such

2010-01-27T13:18:00.002-07:00

Sometimes, most of the time, I go through several topics for my blog EVERY DAY! I sit there for a while, figure out a general flow, and change my mind a few hours later. Monday was no different. I am not sure why I decided not to write then, but that is what I did. I went to the funeral of a family friend, Leroy. Now, I didn't know him too well, but what I remember of him was wonderful! Smiling! After his funeral I was thinking about mine. His was nice, but my favorite part was the military honors. It always touches me.

Then later I was thinking about something else , which I can't remember, and then I thought about how often I changed my subject any given day. I am sorry I fail to write most of them, I am not even sure why that is! Lazy? Private? Your guess is as good as mine.

A great friend of mine and his wife have been sent over to Iraq. They have children. I think of them a lot. It is his second time there. *hugs* to Jose and Erin.

I have not started my antibiotics, I have been waiting on my insurance card. Finally got it! So tonight mom can take me to get medicine! And I have a little assistance coming! I have a few irons in the fire, but I am not sure how they will pan out. There are programs out there, but it is almost like the people who have been told about them and given the task of overseeing them don't want to tell anyone about them. I am TRYING to get assistance for mom and Dan being my caregivers. They charge me rent because they have to, and I can't pay more than I do... but they need more than I give! There HAS to be something. But no one understands that I don't want to move out. They assume when I ask about housing assistance, I want my own place. Grrr... I am also TRYING to get assistance for them monetarily. They clean after me, they feed me, they cook for me, they provide everything for me! They need to be paid for it! There has to be a way. I found some information, but not a lot... and not promising. It sends me back to the Department of Human Services. Grrr again...

So I am working at things, but it is all very disheartening. A lot of running around and misunderstandings and such and you begin to grow weary of the next call.

Antibiotics

2010-01-20T16:23:00.002-07:00

I learned today that there are no oral antibiotics in existence that I can take without a negative side effect. I am so sensitive that who few that I can take (limited because of my medications and allergies) are too hard on me to take. I went in today because I had some drainage at my site. The doctor thinks that it is because of the steroid cream and the allergic reaction last week. Yay! She put me on an antibiotic just to be safe (where there is drainage, there is an increased risk of infection) and I have to go with one that makes me sick.

Something substantial

2010-01-16T00:15:00.002-07:00

So the other week, mom and I were reading something we got from my lupus mailings. It was about depression. Had some signs of depression, and some ways to combat depression. (Not surprising, most of the suggested depression breakers involve other people!) I poo-pooed the article at first. Yes, I know the symptoms of depression. Yes, I know how to fight it. Yes, I am depressed. But it didn't hit me until tonight... I am DEPRESSED!

I try to fight it, and most days I put on a good face. But a few things have happened recently and will happen in the near future that PROFOUNDLY effect me.
The first and most obvious is the recent fight to keep insurance. Now you may think to yourself.. well that isn't so big. But it is, IF I lose it, I lose a great deal! I instantly cannot afford to live (not that I can now, but it is worse.)! I can't afford to go to the doctor to talk about possible alternatives to drugs. I can't afford those alternatives even if I could talk to someone. I can't afford my rent, my next trip to Denver, my food, I literally can't afford to live. That makes me lose the will to fight. You may ask why. Here is the answer. I have been a strong person, and until PH a VERY independent person. Already have lost that independence to a major degree. Take away what little I CAN do, and I am lost.
Second, I always have money issues. I am always deciding how far in debt I should go. Can I afford to develop these pictures, watch this movie, get this sweet treat, and anything else involving my green. Logic tells me that I can't afford anything. But my heart says I have to try. My heart wins a lot of the time, but then comes the stress of figuring out how to pay for things myself. I have many things I want to do, but no means to do them. The extra frustrating part to me is that I can't change that! I can't work more, or get a better job, or move to a new place. I CAN'T FIX THIS!
The third thing is in a few day, but stresses me now. We are putting Blue to sleep. You may think no big deal, but it is huge! I am facing my mortality vicariously. Deciding on whether or not it is time to put him down is facing when I decide to give up. You will say that I NEVER give up. Really? Never? I don't want to suffer, and I do plenty. I will someday give in. Not to mention that he is my dog! He slept at the foot of MY bed! He followed ME everywhere! He loved ME! I have the agony of feeling like this will be a let down to him. Does he feel we have given up? Or does he know we love him and don't want him to suffer. What would he choose. Would he want to fall over every day, hurt every day just so he can be here? What are HIS wishes. Or is he irritated that we haven't helped him yet? Is it a relief that we are taking this choice from him or is it heartbreaking?

I have come to the realization of just how bad I am because I am a bitch. Often times I am irritated, cranky. I don't want to do anything in particular, yet when I want to do something, I am mad if I can't. I get so angry when I have to wait. And give up easily. If I get irritated, I give up. I also cry a lot. At first I thought, not a lot. But I never used to cry. I cry every day now!

Honestly I am so completely overwhelmed! I have no clear view of my future! I don't know how to fix any of this! And no matter what I do, someone is going to hurt. I HATE living off of others. I feel like a leech. You will tell me not to feel that way, that I have no choice, but that DOESN'T change how I feel. I feel like my life is burying me alive.

Finally!

2010-01-15T14:06:00.002-07:00

Yesterday I found out that I have insurance again!! Yay!!!! Stupid people!
Yesterday, I have also been itching still!! The irritation around my site has caused scabbing and bleeding. I am concerned that I am not going to come out of this bout of itching without an intolerance to any tape. In other words, I think I am definitely developing an allergy to all tapes and all dressings. Last night I had almost the same itching under the primapore!

Not much new.

2010-01-14T11:24:00.003-07:00

Still no call from insurance. I called Monday and she said she would call by Wednesday. So I will be calling as soon as I am done here.

I have been itching like mad!! I got a huge rash the other day (Monday) and had to go in to the doctor, and I am officially allergic to my dressings!! Not such a big deal yet, I just have to change which dressing cover I use. When I become allergic (yes when, not if) it will become a problem.

Other than that nothing new really going on. I get to house sit for a friend! That will be fun!! otherwise I have been a pretty boring girl! But I forgot! I have decided that I want to throw a party next year in January to celebrate outliving my expectation without medicine! I wanted to see if I could get a Charmed City Cakes cake, but they are a MINIMUM $1000!! And they don't deliver more than 3 hours from Baltimore. Damn.

Broken

2010-01-08T13:09:00.003-07:00

I am absolutely crushed. I November I called my insurance company for some reason, and got lost in the automated system. Through that I learned that as of Jan 1 of 2010, insurance would be through a new company. So I decided to stay lost and talk to this new company. When I got to a person, they said that I was not in their system yet, but not to worry, they were still getting everything together. I thought , "ok". I went back to the other insurance company to ask whatever question I had and to check that everything was ok on that end. And everything was fine. I didn't think about it again until New Year's Day. So I called again on Jan 4th. Still I am not in the system. According to the new company my insurance was canceled in August of 2009, BUT IT WASN'T!! So the lady, Melinda, was supposed to check with people, and call me back. No call today, so I called again. Same story, still not covered. I got to call several times and speak to several people, and no one know what is going on. So I call the old company again. On their end everything is perfect, that I should have been covered. They send me BACK to the new company. Still baffled, they tell me the same thing. "we will have to look into this and call you back next week."

I am in tears, truly frustrated! WHY?!?! Why does it have to be so god damned hard to keep insurance?!? I am innocent this time, and I STILL have problems!! Mom and Dan tell me, and I agree whole heartedly, that if you have to fight too hard for things, maybe it isn't meant to be. So what does that mean with this? Am I not meant to have insurance? Is this medication not right for me? Am I missing something completely?!? I can tell you one thing. I am done fighting with people. This is fucking ridiculous! What a great start to this year. If it gets worse I give up.

Happy New Year!!

2009-12-31T14:18:00.002-07:00

I have officially been living with the symptoms of PH for well over a year. I went to the Doctor because of it a year ago on the day after Christmas. And on January 2, 2010 I have been diagnosed for one year. This last year has been.. well, shitty actually. So I am very excited to start a new year!

I know that some of you have had wonderful years, and I am very glad for you, and I definitely wish you an even better year! I am tired of sickness, depression, loss, and everything else! So here is to a wonderful new year, full of GOOD miracles, and a lot more of nothing. I hope that isn't too much to ask the gods for, but I am asking anyways!

Happy New Years!

Ideas?

2009-12-28T03:57:00.003-07:00

It is 350am. Almost every day I am awake at this time. Is it because I wake up on my own? No. It is because I am woken up by the TV clear in the living room. I am extremely sensitive to sounds, apparently. I can hear the TV downstairs!! Now, I have gotten pissed before and gone to check the volume, but it a level that really is quiet! Any lower and I would have trouble listening to it myself! It isn't that I can sit in my room and hear what people are saying, or music being played or anything, I can just hear noise. But that is the problem! I guess I recognize that I "should" be able to hear it and i focus on it. Does anyone have any suggestions?

I currently have the TV in my room up so loud to drown out the sound outside, that there is no way I can sleep. I have tried putting ear plugs in, and it doesn't work. I have also tried music, and soundscape stuff. And again, in order for it to drown out that sound it is so loud I can't sleep. I can't ask Dan not to turn on the TV, because he can't sleep either, and nothing to do while sitting awake is torture. Believe me, I know!! I can't move the room I am in, and I can't move my furniture in my room either, because of cable lines, and outlets. See both of those affect this too. The staircase to my floor is across the living room from the TV and just to the left of it. My room is then just to the left of that staircase, My bed is in a continued line across my room. This layout creates a straight line from the TV to my bed. The house was made over 50 years ago, so the doors are hollow core, and nothing is anywhere close to sound proof. You can hear the backdoor shut from anywhere in the house!

Any suggestions? Any experience that would lead to advice? Would one of those "as seen on tv" door things (that are essentially one piece of foam tube on each side of the doorjam, encased in fabric so that when you open and close the door it goes with it) work do you think? Or am I doomed to forever wake up at 350am until I am exhausted to the point of passing back out?

Oh, and I forgot to mention that I already take tylenol PM to go to bed in the first place. I am desperate for good sleep! Please help!

Merry Christmas

2009-12-25T10:58:00.002-07:00

It has been one year since I started having problems breathing. And I feel a lot better in many ways! For that I am grateful. Thinking about it, my life has been completely changed in just a year. Some changes are normal, some not so normal. I do feel I am lucky. Why is that? I have my family and friends. I have better friends than anyone I know!

How are your Christmas' going? I hope well! I know poor Megan is hurting! *hugs* I know Grandpa is sad for what he lost, but happy for what he has. Mom is, as always, slightly overwhelmed. I personally am feeling a little subdued and melancholy. I don't know why.

I hope everyone remembers what they have, and is thankful for it. Everyone has so much to be thankful for! Christmas isn't about what you got for who, from who, or by who. It is about your family. Even the non-religious can appreciate that.

A new ER experience

2009-12-11T12:31:00.003-07:00

I am sorry I didn't post this yesterday! I meant to but I totally spaced it!

Well, Tuesday night I was getting some water for dinner. I felt my back wet, and I wasn't too concerned. I have had that happen where the hub cracks and medicine seeps out. No biggie! Well, when I got to the table I looked at the connection on my catheter, and there was blood pouring out of it! I freaked, mom freaked! We called Denver, and while waiting for the dr to call back we called 911. I was taken to the hospital, they put a peripheral IV in and hooked my pump to that. Well, someone decided to put the blood pressure cuff on the same arm, and they blew my IV! Damnit! So another one was put in my hand.

The surgeon was not able to get in until the morning, so I was admitted. You see, they were afraid that I had a hole in my catheter somewhere, so I had to be looked at. In the morning the surgeon looked at it. Since the line had flushed fine, he hooked it up to saline for an hour to see if anything happened. Nothing did, so he hooked it back up to my pump and kept me for 2 hours. In the meantime I called the supplier. After talking to my trainer it was decided that it had to be a massive failure. They had never seen anything like it! Not only had the hub failed terribly, but either the tubing was defective or the pump wasn't working. So I was released after the 2 hours, and was told if it happened again that it was a pump problem, and to request a new pump.

So nothing big! But man was it scary to see blood pouring out of that connection piece!!!

Oh yes.. I HAVE to tell you about my little Eme!! When Kristine heard about me being in the hospital, she freaked out. She went into Eme's room and grabbed her monkey (see, Eme sleeps with this monkey all of the time) and told Eme that Aunt Anna needs the monkey for the night and gave her a unicorn instead. Eme takes the monkey from Mommy, gives it a kiss, and takes the unicorn back to her room! How sweet is that?!? She knows, she is a smart cookie and knows what she is told! I gave it back to her when I saw her the next afternoon, and she was so happy!

That Nurse... >:(

2009-12-04T01:12:00.002-07:00

I hate her. Dad said she has "bad bedside manners". I say she is terrible (actually, I believe very bad curse words came out of my mouth).

So the other day I looked at my dressing because it was itching so bad. For the first time, even the skin around it was itching. It was red. Mom said she wanted to look at it when I did my next change. I was gonna do it that night, but mom was sleepy! So I tried my best to wait till mom got home (yesterday... so Tuesday). I couldn't, I ended up doing it in the afternoon. I called mom and told her that I needed her to look at it when she got home. So she did. She said it looked like when I went to the doctor in November. I thought it looked bad. (but I cleaned it before mom got to see it) The drainage is a yellowish, slightly green, with a touch of red, color. i am nervous about the red. And the site itself, well that was alright, but it looks like there is a piece of the "foam" coming out. :( So I call my nurse and leave a message for her to call me asap. She calls today.

I tell her all of the above. She doesn't listen, interrupts me, and starts telling me that if I have a fever I have to go to the emergency room right away. I AM NOT CONCERNED WITH INFECTION RIGHT THIS MOMENT!!!! I wait until she stops talking, which takes forever, and tell her that I am really concerned with the "foam". She tells me there is no foam, and to go to the ER if I have a fever. GRRRRR!! I tell her again that I am not concerned with infection. She interrupts me to tell me that a fever of 100.3 or higher and I have to go to the ER, not my doctor, and after repeating that AGAIN and telling me all of the symptoms of infection (not any of the problems I am having at this time) she says that there may be foam, but that she isn't sure.

Why does she exist? I have no clue. She always gets me confused with another patient, who is on a different drug and a different dose, ALWAYS!!!! I give her my name every time I call. She is too busy doing something else at the same time (said that she does) to look me up, and just assumes. And I have to remind her every time that I have lupus, and that my lupus regularly causes me fevers (generally at night) of 100.3 or higher and that I cannot use that as a determination of infection.

So I called my new primary and asked if she could please look at it within the next few days. She said of course and I get in at 215p. After talking to the nurse in Denver I was so upset I was shaking and crying. I hate her. I will NOT talk to her again. Dan has suggested that I write a letter to my doctor, and I am going to do that. There is another nurse I can talk to and I am calling her in the future.

Turkey Day

2009-11-27T10:11:00.004-07:00

Grandpa brought over deviled eggs and olives. Kristine, Joe, and Eme brought fruit salad. We had turkey, mashed potatoes, gravy, stuffing, pumpkin pie, and pecan pie. And it was wonderful!! I hope everyone had a great day too! I had a nice day at home! And I did NOT watch the football game!

I am still using a lot more oxygen, I am a little less tired. I can't really do anything still. I guess I am doing a little better though. I still itch like mad! And I still have drainage at the site.

Calling

2009-11-23T11:48:00.002-07:00

First... HAPPY BIRTHDAY MOMMA!!!!!

Ok, next:

People tell me, "call me any time!" or anything along those lines. And I don't call them. It is because when I do talk to them they tell me all about how busy they are. I feel like calling them to do something is going to interrupt their lives. They reply, "oh you are never an interruption! I have time for you!" But it doesn't ever feel that way. I am not scolding anyone, just trying to tell you why I don't call you.

I want to say "Call me!" Call and tell me, " I am free this day at this time, and this day at this time. Can we get together?" And if I know that I am being an inconvenience (like you are my ride to a party and you would have to leave WAY early to take me home because I am exhausted), I am gonna say no. Period.

So that is why I don't call.

Results

2009-11-18T22:09:00.002-07:00

Well, the tests are in, and here are the results. My TSH is too high, 5 times the high end of normal. My iron is too low, I am anemic. I have Fibro (as noted previously) and *GASP* my lupus is... ACTIVE!!! Midly so, but still active. I got a pneumonia Vacc, and I am hurting because of it. That is a reaction to be expected.

Here is how I feel. I hurt, I am sleepy (but getting sleep right now... lots of it), I am not hungry, and I am cold. On oxygen most of the time... even at home. I guess a bit happier.

My Mom

2009-11-14T09:02:00.003-07:00

She was interrupted while writing that post and subsequently had a breakdown. She managed to clean the entire kitchen while crying. You would have to ask her privately what happened.

She is overwhelmed, and feels out of control. She said that she has lost contact with her friends and needs to reconnect. And I agree. I wish she didn't have to do this. I wish she didn't HAVE to check on me and Dan all of the time. That all day she didn't HAVE to worry.

I was supposed to delete her post and write my own. I didn't do that. I liked what she said. She needed to do it.

The Good, The Bad, and The Ugly

2009-11-14T09:01:00.000-07:00

I requested Anna let me post the blog from our trip to Denver...there is GOOD NEWS!!! Actually there is great, good, and ugly.

The Eco showed a reduction in the pressure of her heart to 50-normal is 30 and she started her Ph life at over 100. The right side of her heart is almost normal, still slightly enlarged but good improvement. Dr. Bull is thrilled!! We are thrilled...but now confused. If she has this much improvement; why the pain? Why the fatigue? What is going on?

They ordered a chest x-ray and pulmonary functions test, they appear to be good; chest x-ray show's chronic pulmonary hypertension (of course) and the pulmonary functions were good.

The next visit (so glad we were there for 2 days:) ) was with a Rheumatologist to consult about her lupus. He was disappointed her Dr. in GJ hadn't been following her with blood work to monitor the lupus and felt she was way over medicated with a drug that can not be absorbed by the body in the dose she was prescribed and was not followed with folic acid and vitamin D (which it takes from the body).

After a lengthy consult with the department head (quite the lady) the conclusion was...fibromyalgia. Yup, now you know the good, the bad and the ugly. Fibromyalgia was a condition she had visited with her Rhuemetologist in GJ about-but he didn't feel the disease was valid disease (all in peoples heads). So...after discussion and checking drug interactions and theraputic dosage, they decided to increase the cymbalta (which was perscribed for depression, but has been found to reduce fibromyalgia pain) dosage to a theraputic level (double the current dose she was on).

They took over a dozen viles of blood to re-establish a baseline for her lupus and will call after the results are all back. We will return to see them February 1, 2010.

After we returned home this evening she received a phone call with the lab results from the TAH blood work (for her hypothyroid) and it was at nearly 29!!! High normal is 5. OMG! She meets with an internist who performed her residency at CU Med Center on monday so...I'm sure she will work on the dosage of synthroid.

Now

2009-11-08T09:08:00.002-07:00

Mom and I go to Denver Wednesday. I have an Echo Wendsday early afternoon, and then a meeting with my doctor after they review the Echo. Then Thursday morning I go back to see a rheumatologist there at UCH. That will be nice, weird to go through that again, but nice to have new eyes. I am not sure if there will be anything else that needs to be done, but I never know until I am there.

I am doing ok but not great. I have been having a lot of trouble breathing, and still so tired. I think they are going to find my disease progressed. I hurt frequently. And I have been having odd dreams.

If I don't write before I go to Denver, I will when we get back. I will be coming home Friday or Saturday.

The Truth

2009-11-01T16:26:00.003-07:00

Mom told me the other day that I have to be strong for Tori, Bella, and Eme. And I know it. I do try. But I am so tired. I am tired of everything. I don't want to do this any more. I have such heartburn, and I can't breathe, and I hurt, and I itch, and I don't want to do anything. I just want to sleep! I barely have the energy to do one thing each day. When Eme is around I find the ability to do whatever else, or for Tori and Bella. How long is that going to last?

And I am tired of false hope. First is was, "you have lupus, but you will be able to live a normal life." Then came, "you will still be able to do most things." Then it was "you have a deadly disease, but here is a treatment that will make everything bearable." It doesn't. I don't have a normal life, and I don't get to do most things, and this isn't bearable.

I love snuggling with my mom on the couch. That is the most exciting part of my life now. That and watching NCIS.

I hate people telling me, "God never gives you more than you can handle." That is crap. That is a cop-out. And this doesn't bring me closer to "him". In fact this whole thing has taken me further from "him" than anything else has. Did you know that I believe in reincarnation, and I am polytheistic? I did nothing evil enough, or bad enough to deserve this. But I get it.

And you know what? I am ready. I am done. I have cried a few times this week, and I have remembered, and thought. And I have reached the point where it would be ok. I just need you to know, and understand and be accepting, and not be mad at me when the time comes. I am not giving up. Saying it is ok is not weak. It is strong, hard, and right.

But do you know what HAS happened because of this, I mean other than all of the terrible things I could list and mention? I am a lot closer to my friends and family than anyone else I know. I have the single best mother in the world. The best parents, grandparents, teachers. I know that I am truly loved, truly cherished. So I can be at peace, with everyone in my heart.

Getting Sick?

2009-10-16T22:57:00.002-06:00

I think I am starting to get sick. Not sure. I was talking to Dan, he isn't feeling well, and he is feeling the same as me. We both feel like our blood sugars are low, and have a headache, and body aches. I am also having difficulty breathing. So, we will see.

Been a while.

2009-10-15T12:02:00.002-06:00

Sorry again! I have been pretty lazy the last few days.

Xena and her family came, as you all know, and had her birthday party here with me! It was a blast!! Tiring!! But a blast! We went to Bananas for it. I will develop the pictures soon and get them posted up here.

Otherwise not a lot to say. I am working on getting new doctors. not necessarily to replace the old ones.

I haven't been sleeping well. It is taking me forever to fall asleep, and I wake up all the time! So I have been napping!

Nothing.

2009-10-10T22:42:00.002-06:00

That is what has been going on with me medically. I haven't heard from anyone! Ne calls, no packages, nothing.

The Bunces are in town!! For Xena's birthday! She wanted to spend her birthday with me (*tear*) and we are going to Bananas! They got in Friday evening, and I went to dinner with them. After words I went to the bingo hall to play with mom, Juddah and Cass, and Laura and her mom! Didn't win.

Today we went to the mall for halloween stuff, went to lunch, swam, and did the Dinosaur museum!! Tomorrow looks to include the desert for RC car racing, eating, cake baking, the butterfly museum, and maybe more.

I am tired now, so I will write again. Maybe something (good) will happen with my health in the meantime.

New Nurse

2009-10-05T12:16:00.003-06:00

I have to remember that I hate change. When it comes to the big things, I don't want it. I can't decide if I am irritated with my new nurse because of anything she said, or if it is just because she isn't Sondra. I will let you know. I hope that it will be ok. She did tell me that I am not supposed to sleep on the right side. Since the right side of my heart is enlarged, it is uncomfortable to the point of pain, and possible pulmonary problems! So I guess that is good. She also told me that they are going to try different dressings to see if that is the cause of irritation. It is easier than changing the tubing. But she said that if that didn't work, that there are different kinds of tubing that we can try. So I have some hope. Although I am skeptical. I am afraid that we are gong to think things are going well, just to have more irritation. I told her that when you change things, it can take a while to show any irritation. It took 6 months for this to start. So we will have no answers for quite a while. She also told me I am not to put any other tape on my skin, so I have to change the way I do my dressing. And she is checking on my referal to the rheumatologist there, making an appointment for when I will be there in Nov. That will be nice.

And More.

2009-09-30T19:19:00.002-06:00

I learned today that my nurse in Denver, Sondra, is leaving the hospital. Her last day is tomorrow. My "other" nurse there, Carrie, left last week. I have new nurses until they find a permanent replacement. It really makes me wonder if there is something going on. I love my Dr... is he leaving the hospital? Is he the problem?

Mom came home tonight, and the first thing she said when she saw me was "You look thin". Well, we weighed myself, and I am at 126. That is a 10 pound loss in less than 2 weeks.

I am tired today. I hung out with Carson, made dinner, and I am done. So... good night.

A Lot

2009-09-27T16:51:00.002-06:00

I am so sorry to not have written in so long! I got back from Rapid City and didn't have any internet!!! Turns out that I just needed to reset my modem. Why didn't I think of that?!?

So I got back into Junction Monday evening. Dad left that same evening for home, sleeping in Cheyenne. I did really well through the whole trip. I didn't really start hurting until it started storming on the way from Ft Co to here. And that hurt like hell.

Starting the Tuesday I was up there, I have had yucky yellow drainage. I talked to my nurse in Denver, and she wanted me to go to my primary. Well... he took one look and said go to Denver. That he couldn't help me with it. Needless to say, I was way stressed! Well, after talking to several different nurses I was sent to the emergency room (this was this last Tuesday) to get a culture. Those in the mean time have come up negative (meaning it isn't an infection). And my nurse had already figured that was the case. WELL, I was told it sounded like because of my lupus, my immune system has gone berserk and has decided to reject the catheter. My rheumy said that my lupus has been in remission for more than the last year and that if my body is rejecting the tubing I just have to live with it.

I felt like I had just been dumped by the two people who were close enough to help me. I am angry, depressed, and stressed. What do I do now. My nurse said that my Dr in Denver doesn't know. It is dangerous to leave it in because it may become infected or I may grow an abscess because of the rejection and drainage. I am trying so hard not to push people away. I just want to snuggle up with my mom and watch tv. I don't want to do anything, go anywhere, or see anyone. And I know that isn't healthy.

I also now must start looking for a doctor in the Grand Valley who is accepting patients and who is willing to work with multiple doctors in Denver. There are no other rheumys here in this area. I will have to call one at the Univ of Colo Hospital. So there is yet another doctor too far away to help me.

On a good note... the dr who treated me in the ER Tues was awesome!! Julie Mills. I will be asking for her.

Off to See the Wizard!

2009-09-19T09:06:00.003-06:00

Today we head back home. Tonight we will stop and stay with my brother, and we will stay again tomorrow night and then Monday I will be back in Junction! I have had a really good time, but now it is time to go home.

Thursday Dad and I went to lunch with Grandma Cordes, and it was great! Then we went to a few gift shops and fixed dinner. Dad went bowling (I couldn't go because they still have smoking in buildings here) and Ronda and I went to see my stepbrother's family again. The kids are so cute! Yesterday Dad and I went to Art Alley and I took some pictures. It is gorgeous! It is an alley between 6th and 7th streets that the kids can go graffiti, with few restrictions. Wow! I can't wait to show the pictures. It is always changing, as the kids go paint over the old stuff. Then last night my aunt and uncle came over with Grandma for dinner.

This morning we are meeting the family for breakfast before we head out. And we should hit Ft Co by 6!

Deer and Icecream

2009-09-17T10:00:00.003-06:00

I have really been enjoying my trip! It has been kind of uneventful, but not too much so. The other day, Tuesday it was, I was just looking out the window to the back yard. I saw 2 deer, does I am sure! Right at the house, eating in the garden bed! It was wonderful!! Then I went to visit my aunt, uncle and cousins. That was a wonderful time too! We just chilled, watched the youngest show off for me.

Yesterday, Dad and I played on the Wii, it was fun! Looked through pictures and chatted. We fixed dinner. Afterwords, all of us went to my step brother's house and met his little ones, who were way into showing off for their great grandma! Then it was time for dessert, so we met a bunch of family at Armadillos for ice cream! Then my uncle took me for a ride in his Miata. It is a sweet car!

I am still doing well. Doing my very best not to over do it! But my sleeping is getting worse as each day progresses. I slept so well that first night here!! I am tired today. And I keep yawning.

I am not sure what we are going to do today, so I can't tell you yet!

OH YEAH!! I forgot. Mom already knows this, but others of you may not. Mom has the flu, Dan had the flu, and my boyfriend had the flu! So see!! I was right to come out here! Missed all that! (hopefully) ;)

Visiting

2009-09-15T18:59:00.002-06:00

So I am now in South Dakota, visiting my Dad!! The trip up here we spread out, and rested in the middle. I feel pretty good! A little stiff, but nothing too bad. Got sick on the way from Junction to Ft Collins.

Just visiting family here, and chilling at the house. Nothing too much. We are going now... so I will post more later.

Yep, She's Right

2009-09-08T11:48:00.002-06:00

Yes, Anna is correct; I was supposed to post a new blog to update everyone on her condition. I failed.
From a parent stand point this disease sucks big time. By the time our children are 26 they are supposed to have a life of their own, barely having time to talk when you call them. You are supposed to go to their home for the holiday's and be imerged in your own pointless hobbies. But...
Anna lives with me, I worry about her 24 hours a day, I check on her every morning before I leave the house, I check on her before I give Dan a hello kiss at the end of my work day, if I don't receive a call from her atleast once a day I worry sick, I miss her company if she is in her room playing on the computer in the evening instead of sitting on the couch with me.
I want to go to the mall with her, walk around the neighborhood with her, play bingo with her, hear about the awesome things she did or saw or learned today. Instead I stroke her hair, kiss her forhead, ask her how she is feeling, and what she has been doing.
Last night I told her I still hold faith that she has PH for a reason. I don't know if it to help her, me, her doctor's and nurses, or some unknown person to us. But of all the aweful things she has been through, they are good.
Last week when we were in the post op recovery area her nurse, Sondra came to see her. First thing she did was give Anna a hug. Then her doctor, Todd Bull came to see her and the first thing he did was give her a hug. This is what medical care is supposed to be for everyone. All of us should have a relationship with our medical team like Anna does. And it doesn't stop with her Denver doctor's; her doctor's here in GJ are the same-the first thing Dr. Faber does when he walks into the exam room is give her a hug. She may be a challenge to Dr. Terry, but he love's seeing her each time. How many of us can say that about our doctor(s)?

South Dakota??? No I don't think it is a wise thing for her to do. I understand her desire and felt need, I also understand the physical condition she will be in when she returns to me. She will be weak, exhausted, ill, and in pain. Is it worth it? To me...NO. To her...maybe. But I will be here to help her recover, gain her strength, and work through the pain.
I will be here......
I LOVE YOU ANNA!!
Momma
xxoo

So Sorry!

2009-09-07T13:31:00.002-06:00

Mom was suppose to post for me last week, but didn't do it!

The surgery went well. Afterwords I was told that I looked great! That is nice! Well, talked to the doctor and my nurses before getting out of there. It sounds like we wouldn't have had to do this if it wasn't for my allergy to all antibiotics. Hahaha!! So they want me to see an allergist here and see if I am truly allergic, or if I am just going to have to live with the painful side effects of these drugs.

We left to come home, Mom and Dan in one car, and Ryan and I in another. I got so sick. We had to stop in Downiville. We made it home, but I was miserable. That night home I threw up again, and again Wednesday. We are not sure what it was, but safe to say it wasn't the anesthesia. I think I got the flu. The surgery weakened my immune system enough that it came through right after the procedure. After being sick for 2 days, I got a lupus flare that hasn't yet left completely. I have been in pretty intense pain. Saturday was the first day I got dressed!!

I am going to South Dakota to visit my family next week! Dad is coming on Friday, and we will leave Saturday. We have it set up so that I get oxygen there, and I have doctors lined up if there are any problems. I have talked to my nurse and they are all fine with it. My mom, however, is not.

Now!!

2009-08-26T20:31:00.002-06:00

I go to Denver again Tuesday. I am scheduled at 930 Tuesday morning, so I will be leaving after my boyfriend gets out of school Monday. Monday night we stay with my brother, and then head home after the procedure. UNLESS anything bad happens.

My aunt is in from out of town for the weekend... so I will be chillin with her!

And I am so ready for this damn tube to get out. I hurt so bad when I take a shower, or when I have to change the dressing. This isn't worth it.

Still?

2009-08-24T20:49:00.002-06:00

So yesterday, when mom came home from work, I was snuggled in my bed. She touched my face and exclaimed... "you're hot!" No! Not like that, you sicko! She took my temp.. and what do you know?! A fever. Again. Damnit. All day today too. There isn't any tenderness in my chest, yet, and I hope there isn't any coming. I will let you know. I just want to get better. I am tired of feeling shitty, and I am tired of tubes coming out of my body, itching and hurting. *grumble, grumble*

Sigh of Relief

2009-08-20T18:13:00.003-06:00

Well, my nurse basically gave me a "well duh!" smack on the head. Of course the cultures didn't grow anything! I am on antibiotics! So I am simply to continue my antibiotics and call her in the morning. I am having pain in the old site, tenderness and swelling. I am supposed to go to my primary for that. I don't want to. Each time I go I have to pay a co-pay! I am already up to $100 that I need them to bill me. So I will warm compress it and see how it goes.

Again.

2009-08-19T11:48:00.002-06:00

So I talked to my nurse a little this morning. Guess what. NO INFECTION!!! She is so confused. She said "it looked yucky and green to me." So what does that mean? We don't know we are stumped. She is emailing my Dr to see what he said. I asked if the tubing was irritating my body and that caused an abscess. She simply said that would be hard to determine. So more waiting.

No News...

2009-08-18T21:11:00.003-06:00

Is good news? Well, I haven't received any results from the cultures in Denver. I did put a call in to my Dr and expect a call tomorrow. I am feeling better. I am still tired very easily, but that is to be expected. I am not sick any more, not QUITE as sore, and a little more irritable. I also am craving less ice. Is that because of taking the tube out? Because it is getting colder? Non-related? I am just not sure.

Post Op

2009-08-15T12:54:00.003-06:00

So.. the world collapsed the day before yesterday (also known as Thursday). I Talked to my nurse and she really wanted me o go to Denver. She made an appointment for me to go the next day (also known as Friday) to Denver and get the port removed. My Dr here in town was a little upset... he felt they were stepping on his toes. But after that stress, I decided I should write in my blog and say what was going on! But.... Bresnan phone and internet was down. It went down at 8pm Thursday and didn't go back up until yesterday early evening!

So we went to Denver yesterday, Mom, Ryan, and I. I was scheduled to get a PIC line at 1pm, then they would remove the Hickman. We got there at about 1030a, and they were able to get me in early. So that was nice. We saw Sondra and Dr Bull, and they said it was best to get it out mostly because I am allergic to all of the good antibiotics.

I go back to get the PIC, and find out that there is no anesthesia for either part of this. I am a little worried. The Dr who was preforming this procedure tried 6 times on the left arm and 2 times on the right. It hurt so bad!!!! She said that each time she went to put the guiding wire in the vein it would collapse. After the second try it hurt like hell, after the third I just cried. Finally 2 hours later, they decide to go through my neck. Still nothing for the pain. After they finally get that in, Sondra switches the medicine to the new line. I told her it was hell and that I didn't ever want to feel that again. After she leaves, I ask the OR nurse if it was going to hurt when they take out the old cath. She said I won't hurt at al, and I told her that was good, because I couldn't handle any more painl. Well, how they do it is they stretch the skin around the foam piece under the skin and pull. It hurt like a bitch. I cried out, they stopped, and FINALLY I GOT PAIN MED!!! And after that it came out no problem. I get to go back in about 2 weeks to get the new catheter placed.

I was so ready to give up. I had reached the end of what I can handle. I never want to experience anything like that again. I mean WHY cant they give pain meds? Or the medicine that you get with an endoscopy... still awake without remembering or feeling.? I told Sondra never again. I will never hurt like that when I don't have to. She wasn't pleased, neither were Mom and Ryan.

Well, we came back last night too. But first we ate dinner. Guess where...! CASA BONITA!! Ryan said he had never eaten there! It was fun! I think he had fun. Mom and I did!

Well, I am tired. I have been through a lot. I am gonna nap now.

Almost There?

2009-08-12T12:58:00.002-06:00

Last night went on without much excitement. Except for a fever. It got up to 101.2 so I took Tylenol. I did call the Doctor, and he said to just take Tylenol throughout the night since I was going to see him in the morning. I went to the Doctor this morning, and things look better. The swelling and redness have gone down, and I feel a lot better. My instructions were to change my dressing, and I did. But just before I did I pushed more puss out. Then shortly after that my nurse called to check up on me. I told her about everything, and she is concerned about the puss today and the fever last night. She said that should not be happening. But she said she would talk to my Doctor up there and unless he feels differently, she will call tomorrow.

And We're Sick

2009-08-11T19:11:00.002-06:00

So I didn't update yesterday, and that is because I felt like shit. I felt ok for the morning, I had a few bites of cereal. Then I went to the grocery store for something to drink around 2 or 3 and got sick. I had to sit down for a while before leaving. I decided to check my blood pressure since there was a machine right there. My pressure was fine, like 108/76, or something close. But... here's the kicker... my pulse was 146! Way too fast. So I called my Dr here and he said to call Denver and see what they want to do. They wanted me to see Dr Terry and were afraid my infection may have gone sepsis. So I went to him. I didn't have a fever still, but the site was red, inflamed, I hurt, and I wanted to rip my insides out because that would hurt less. The Drs talked about it for a while, and it was decided that they would send me home and I would come back today. Oh, and I got suppositories for my nausea.

So when I got back home, I took the new med. It took like 2 hours for it to work, but it finally did and I could sleep. I slept for a little bit. Then I woke up again because of my stomach. My temp only got up to 99.7. Took meds again and went to sleep.

I woke up this morning at 830. I hurt so bad, but I wasn't as sick. I laid on the couch for a while. I went to the Dr, and he said it looked a little better and that he thought the nausea was from the antibiotic. So I was to switch that medicine, and come in again tomorrow. He said that until I was clear, he was going to have me in every day, that if I got worse it would happen too fast.

The new medicine isn't making me as sick. My tummy is a little tender, but nothing like it was. I actualy had some dinner. But I am ending for now... I am really tired.

Eww Gross!

2009-08-10T11:33:00.002-06:00

I wish I had a picture of it because you would be sick. Last night, I was getting ready for bed, Mom looked at my port site from a distance. "It looks a little crusty". I glanced at it and said "No, I just cleaned it yesterday", then I took a closer look and it did look a little crusty. So I pushed on my chest just above it and green puss poured out of it! I was shocked I just stared at it for a while. Then Mom came to the rescue. "Call Denver, we have to go to the ER."

Not a lot of action, they did an iv, blood culture, wound culture, and gram stain. The stain is all we have back... the rest takes 72 hours, and it said there were no living organisms, the white blood cell count was high, and there were a few red blood cells. I got discharged at 2am. (Poor Mom!)

Well, when I was discharged, the nurse said that the PH dr on call would leave a message for my dr and he would call me in the morning. Well, I haven't heard from my dr by the time I woke up, so I call. No one told my nurse. *face palm* I tell her everything and she is supposed to talk to the dr and call me back later today.

Fun About

2009-08-06T22:50:00.003-06:00

I went bowling today! It was great! I watched the first game and played the second. Mom told me I couldn't unless I used the ramp. (That takes all of the fun out of it!) Ryan and I took turns bowling as the same person. We did alright. He did better on his own. But we learned that a purse over your shoulder while bowling, throws everything off! So I attached it to my belt so it wouldn't swing, and it worked!!

I got another orchid. This one is white with a purple cheetah pattern on it, gorgeous! My fountain is gorgeous too! I have a chocolate plant and daisy right next to it (so cute!)

I talked to my nurse, and she said that my top end of Remodulin may not be 52... I may have until 70. It will really just depend on how I do. So... yay? It means more question marks...

My pain.

2009-07-31T22:01:00.002-06:00

Well, time with Dad has came and went. I had such a great time! I loved it! And, like always, it was way too short.

We did a lot! And at the same time, we did not a lot too! We went to Banana's, Eme loves the popcorn game. And ate food. Went to Angelo's and painted pottery (I will pick that up Monday or Tuesday). I really am grateful for the time I get to spend with him. We are working out a trip for me to go to Rapid and visit my family there. There are a lot of details to work out, but I am trying!

And I must apologize. I am a bit scattered, and I have been holding some information. I needed to process and grasp it before I could share it.

A few weeks ago, when talking to my nurse, she asked me if we (meaning my doctor and I) talked about a transplant yet. I said I hadn't, but was too afraid to really press her for why. Then last week, when I went up on my meds, she gave me a bit of news I hadn't wanted. The average maximum for patients on Remodulin is 50 to 52 nG. I am at 42. I go up by one nanogram every other week. When we get to 50 we are going to have to start a new plan. We will try adding medicine, like Revatio (Viagra), but we were told at the beginning that it is not likely to work. That means (again, this is as far as I can gather... doctors will NOT give a timeline) I will have to go the transplant route a lot sooner than we were hoping for. In the beginning we were told that PH patients are not given priority for transplant. 2/3 of PH patients on the transplant list die before getting the transplant. I know, scary. We aren't done yet. But take a moment.

The next thing I have to think about, is can I survive a transplant? I read about this young woman who got a transplant and after 3 weeks recovering, she is doing everything that she couldn't before. MY PH is caused because of my autoimmune disease. My disease will be there even after a transplant. SO FAR my lupus has not been able to be put into remission on medication. There is nothing to suggest that it would go into remission if I got new lungs. That means I would end up here again in a fairly short period of time. I have had lupus for 5 years, and my lupus was not attacking my lungs all of those years. We figure that has just been within the last 2 years. Do you remember the SIMPLE surgery I had on my esophagus? It almost killed me. So close (and I didn't know this until tonight) that visitation was stopped a few times. Now breathe, we are almost done.

I am scared. I have been scared, but now I am telling you. I go back to Denver in November, and I completely expect to start the transplant list and prep at that time. It will be hard. I have strength, and I have love. I will do the best that I can. But we need to start thinking about the possibility that I will not make it. I hurt now. Yesterday I worked on a fountain. Grandpa cut a wine barrel for me. Then I had to nap. I lined it with plastic and filled it with a hose. I had to nap. Today I played with my pump and talked to a lady at the store. I had to nap. You, the average person, would be able to do all of that in a 2 hour time frame, and then go to work, and cook dinner, and clean house. I folded laundry the other day. 2 loads. Then I went to bed. I played 6 holes of mini golf. Then I was fighting being sick the next day, and I mean vomiting/over exhertion. And this is on medicine that is still working! I lay down, and if I take a full breath I am in pain. I can't extend my right arm because the joint is inflamed. This is what I don't talk about.

I have not been taking my medication every morning, because it makes me sick. I mean I sometimes vomit, always get a headache, always need to sleep, and sometimes can't move. I have not said how big of a miracle it is when you see me out and about, let alone when I smile. I feel strained. I feel like I have to be strong for everyone. I am related to mom, and like her I can't be weak. So I don't talk about these things. But it wouldn't be fair to you, if I didn't. You need to understand why I am calculating things like "do I make my fountain perfect, or just do what I can so that I get to see it finished?" or "do I take Ryan to Rapid City with me this trip because I may not get another chance to share that with him?" and even "how many classes do I take Spring semester so that I get to feel the sence of accomplishment of completing a degree?"

Some of you will tell me that the doctors can be wrong. And yes. BUT I KNOW MY BODY BETTER THAN ANYONE! And I know how the medicine feels. I know how I feel. And I am the one to pay for it.

But I am scared. Terrified. I am holding onto the hope that before I reach 50 nG I will reach that magic number and that I will coast for a long time. But I know that I won't.

Hi Dad!

2009-07-26T10:32:00.003-06:00

Dad is in town again! I am so glad too! Yesterday we looked at stuff for a fountain for me. See, I have this wine barrel that I am going to turn into a fountain. I want it to be solar, and that is where the problems begin! I will have to do research to see what I can do.

Today we are going to watch Eme for a few hours, and hang out with Kissy when she gets off work. With Eme, I am going to see if we can go to Murdoch's. There is a fake horse there Eme likes, and they may have stuff for a pump!

Mom, Ryan, and I went to the fair the other day! It was nice, I liked seeing the llamas. I feel bad for the tiger. She looked indifferent. I want to go back at night and take some pictures, IF it looks cool. It is just an idea.

Really?!

2009-07-21T22:58:00.002-06:00

Recently, I have been motivated to look into college again. I think it would be really good for me to have something I have to do. Tonight I actually started looking into it. And... I only need to finish, for sure, 3 classes and I will have an Associates of Liberal Arts! I need to go and talk to people there, because I can't do the PE requirements, and the ADA says I get special treatment.

I have to look at what I can do once I get an AAS, and what I need to do for it. But all I have left, other than the PE, are 9 credits of Social Sciences. Si I am looking at Abnormal Psych, American Gov, and US Hist (the first semester... I have the second). I would NOT take them all at once, but I could do one, maybe two, this Spring, and one in the Summer, and whatever I have left the next fall. Hmmm... not sure.

Yep. I think that is it.

Good Afternoon!

2009-07-18T11:25:00.004-06:00

I recharged. I spent time being me and being young. It was so wonderful! Ryan and I went to Denver on Tuesday. On the way, we had a picnic in Frisco... and of course stopped many times along the way so I could use the restroom. Damn medicine! Anyways, when we got to the hotel (we stayed at the Comfort Inn Downtown) and we went up to our room, we found out that we got the king suite!! YES! I have always wanted to stay in that room! It was beautiful! We rested, as I needed a nap. Then we decided to go to dinner and then walk a bit on the 16th St Mall. We ate at Rialto's. The waitress didn't like Ryan. On the way back to the hotel we sat on one of the corners. I watched people and Ryan read one of the books he had purchased. It started to rain, and it was so beautiful!

The next day we went to the Denver Art Museum. We decided to go to the exhibit they had for the San Fransisco Sound from the '60's and '70's. It wasn't that great. But then we saw some of the other exhibits, and we really enjoyed ourselves. After that I needed something cool to drink and to just rest. For dinner we ate at The Old Spaghetti Factory. Our waiter was really cool! The food was wonderful and I had a bellini. If you haven't enjoyed one of those I highly suggest you do. We walked back to the hotel, pausing along the way just to enjoy existing.

Thursday we checked out of the hotel and went up to Fort Collins to see my brother and his girlfriend. They are doing really well! It was so good to see them! We had lunch at Lucky Joe's and met up with my friend Lee. Lee had to turn in a paper for a class and the rest of us wondered Old Town before going back to Dean's. When Lee got back we played a game of magic before heading out of town. We got back here to 1030pm.

I am just so happy!

Lots and lots

2009-07-10T12:30:00.002-06:00

Sorry I haven't updated you all. I have been pretty busy! I am taking a break from doing my hair (I got a hair cut!) to bring you this fabulous update!!

My daughter is coming to town today! Her and her family are coming because they have a BMX race here Sunday. Oh I am so excited!!!

I am also going to Denver on Tuesday for a few days! I know we are going to the Denver Art Museum, and I want to go to the 16th St Mall, and we are going up to Fort Collins for lunch.

Dean and Abby moved to Fort Collins today. I will miss them, but it is so great that they are going!! They are leaving a bit more sad than they were planning, however. Little Dog, aka Gna, passed away Wednesday night. She was Dean's cat. We don't know why.

Wednesday was my birthday! And I had a blast!! Went to lunch at Zen Garden and had sushi. We had dinner at the house, as Momma made me enchiladas!! And mini-golf and bumper boats after that!!

I am feeling well. Nothing to report on that front. I have more energy I think.

And my Dad will be coming into town soon too!!

It's July!!

2009-07-04T13:50:00.003-06:00

So I had a minor emergency again. I don't get my insurance back, but I have new insurance. Since my new insurance didn't start until July 1st, the pharmacy wasn't going to ship my medicine to me. After much stress and a bit of crying, I got my shipment with just one day of medicine left! I was scared. Mom was scared. Plus she had been doing the bathroom (she re-tiled it!). I think she is doing better.

I am going to go on vacation. I cleared it with my mom (she isn't happy) and my nurse (who is very happy!) . Mom is, reasonably I feel, over protective. I love her! But Sondra wanted me to remind her that the reason we are going through all of this to get me medicine is so that I can have a life. If I am not going to use and enjoy that life, there is no point in all of this. Mom didn't like that, but I wasn't told I couldn't go. I am not sure what I will be doing up there, but I am going with Ryan. Zoo, aquarium, art museum, theatre, botanical gardens... there is so much that I can do! I will only do like one thing each day I think.

Happy 4th of July!! I went to a BBQ last night at Todd's house. It was great! His family is wonderful! Well, I was reminded of why it is so great that we live in America. Yes, it has it's problems... we just need to stand up and make the changes it needs. But this elderly gentleman and Todd were having a wonderful discussion about the current and past wars, they were disagreeing, and one felt that America was great while the other feels it is messed up. That conversation could happen because of this country. It was just really nice to listen to.

OMG! Good news!!

2009-06-26T12:00:00.002-06:00

So I went to the doctor today. I don't have insurance. He gives a discount if you pay at the visit. Of course I take that! Anyways, he asks how I am and I rattle off the list of ailments that I am there for. After an exam, he says I have a bit of pleurisy. That is a swelling of the bi-layer sack that surrounds the lungs. The swelling causes the two layers, which usually have a fluid lubricant between them, to rub and causes pain while breathing. It is caused by the lupus attacking the lungs. SO... I got a cortisone shot. And we'll see.

THEN...

I GET MY INSURANCE BACK!!!

For some reason, a girl crying on the phone that she will die if she doesn't get her medicine and has no way to pay for it doesn't cause anyone to do anything. BUT a big pharmacy can call the same people and get it reinstated. huh?!? But it worked.

Spoons

2009-06-25T16:41:00.005-06:00

It is a rainy day. I spent the afternoon with Carson, since he was out of town for his birthday. It was nice!. I also spent the afternoon not feeling well. I hurt (yay weather!!) and I can't breathe. I go to doctor tomorrow with news that my chest hurts and I am short of breath. I will go to a friends house this evening to hang out. Now I know, "don't over do it!" and I won't. But I need this. I need the chance to feel semi normal.

This is my problem lately. I want to be me, but I want to be more, I want to be fine. I want to, oh I don't know. At lunch today the waitress asked me "do you want to start with a delicious margarita?" Why can't I say "Why, yes I would!". I am angry today. I am supposed to go to school, have a career, go to a party now and then, spend time in the sun. And I wonder... am I strong enough for what is coming? A lot of people have confidence in me, and a lot say that I am strong. I look at my cousin who died not long ago. He was strong in a lot of ways. Yet he was scared too.

I am sorry. I feel like I have just been complaining lately. I don't mean to. I am trying to be honest to everyone about how I am feeling. The "strong" insides I have tell me that I am weak.

Just a reminder for those I care about. This is a VERY good analogy to how I am. I know some have read it, and I am sorry I repeat myself! But those who haven't read it.. you should! It is great.

The Spoon Theory
by Christine Miserandino www.butyoudontlooksick.com

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. I’ve wanted more "spoons" for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can't take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared”
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons".
After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons".

To the Dad's

2009-06-21T05:50:00.003-06:00

Happy Father's Day!! I hope all of you fathers realize just how special you are. Today I am spending the day with Dan, and Joe. Then Grandad and Grandpa are coming over for dinner and ice cream. I wish I could see my Daddy today, but I will get to see him again soon.

Yesterday Tami took me out to Fruita to take some pictures! It was awesome, and it meant so much to me! Amber went too, and we ate at Qdoba.

Because of the storms the other day, in cahoots with the stress of last weekend, my lupus has been playing with me. I have been fairly sore, and I have a rash on my face. Ryan said that you can't see the rash. But Juddah asked a great question last week, and I need to ask it of my nurse. What does active lupus mean in terms of my hypertension? If you think logically (and a bit dramatically), lupus causes inflammation. Inflammation causes scarring, and damage, to my pulmonary arteries. BUT that is only if the inflammation of lupus IS occuring in my lungs. How do I know if it is? Well, I don't know!! I didn't know it was attaking my lungs in the first place until I was about dead!

Well, if not a little too early... it is a gorgeous morning! The clouds are reflecting the light in an amazing way, and the colors!! As well as being Father's Day, it is also my Grandpa's birthday, the first day of summer, and the ever important Summer Solstice!

I have a large number of dads in my life. My dad, stepdad, grandpas... and of course Duane. Happy father's day!! I love you all!!!

Insurance

2009-06-15T23:43:00.002-06:00

I didn't say anything earlier because I didn't want to freak anyone out. But now it is mostly resolved, so I can tell you. I lost my insurance as of May 1. Apparently my insurance company didn't receive my May premium. Since I sent it via regular post, I don't have any proof, and they will not reinstate me.

Now remember, I said you didn't need to freak out. Here's why. I called CuraScript (they supply my Remodulin) and told them. I called Caring Voice (they help me with my premiums), they are looking into what they can do. I called my nurse, and she said no matter what, my Dr won't drop me, and I will still get my medicine. So... breathe. I had to.

My mom took care of the last part. She called RMHMO and they denied me. But they did give her information about CoverColorado.org . So today was the deadline to apply for coverage beginning July 1. I got everything in. Thank you Momma!! I love you. And we can not worry.

We were scared. If I can't pay for my medicine, how can I get it? And my doctor!! They like to get paid too!! There is no way! There is no way I can pay for the months of May and June, but I will live. Sondra was wonderful, my nurse. She said, "as long as it is just financial, there is always away." She reminded me that it will be tough, but that I will be just fine. Thank you Sondra, you are definitely one of my angels!!

My friend Ryan asked me tonight if I was not writing about it because I didn't want to worry you all, and I told him that was correct. So then I felt guilty that I didn't say anything. But I needed to wait. And I am letting you know now. If things were different, I would be saying help! But I don't need to say that right now. I do, however, want to keep you in the loop!

And again... thank you to all of my angels. I somehow get put through the ringer, but you get me through it safely.

No River

2009-06-10T19:42:00.002-06:00

So I thought that everyone would appreciate an update. The last post was pretty depressed. I am still the same, with mainly the same feelings. But I don't want anyone to worry. I will, as always, get through it. I am not so bad that bad things will happen. I think it is normal for someone in my situation to have these feelings every now and then. I am still an upbeat and positive person... but a lot of negative (which is what my health is) is grating and can really get to you after a while. I will get happy again, don't you worry about that.

I haven't been sleeping well.. I hope to change that tonight. Don't know for sure what all I am going to do with myself tomorrow, but I hope I have the energy for it. I am going to bed now. I didn't get to sleep last night until 530 am!! and I had to then get up for a funeral at 830 am! So I am tired. hopefully it will work for me to go to sleep.

Anyways, the point of this was to reassure you all that I am ok. And that I am not going to be doing anything stupid. I just have a negative and morbid mind right now.

Cry Me a River

2009-06-09T23:06:00.002-06:00

I have been in a weird mood for a few days now, and I am not exactly sure why.

On Saturday, I found out that my cousin that has terminal cancer was close to the end. I didn't think it bothered me. But I wanted to see him. I felt a need to. I wasn't able to and Yesterday morning he passed away. I am not sure how old he was, like between 35 and 39 I think. Anyways, too young. It hit close to home.

I couldn't help but think that soon that will be me. I really do try hard not to dwell on this fact. I mean, everyone is going to die. But most people get the pleasure of not having to think about it because it is YEARS down the road... or just an inevitable something that they don't have to deal with yet. And I know that I will be here long enough that things can be developed that will save my life. I have to be realistic, and I think those around me who care about me have to as well. It is unlikely that a drug will be developed to make this go away... and I don't want to live forever with this.

And then on top of it all I was focusing on everything I can't do that I want to do. There is a lot that I would like to do. I can drive (yay!!!) but sometimes I still feel that I am locked away in my room. I was talking with my friend, Ryan, today. And I would love to go to Glenwood Springs, or Ouray and just walk around. Spend a leisurely day enjoying summer. Or hike Devil's Kitchen Trail, I have never done that. Go horse back riding (that is actually a lot of work) anywhere. Go camping! Rafting! Just be able to be a 25 year old girl with no cares, just enjoying the state she is in. But those are the things I can't do. And I know it isn't healthy to dwell on that, but rather I need to focus on what I can do. But I want to see you try to do that all of the time.

I do realize just how lucky I am. I have the best family in the world. And that is not just my relatives. It is all those people I have that love me, and are there for me. The ones reading this and the ones that would if they could. I know how great it all is. I know how lucky I am to have the doctors that I do, to have the insurance I do, and to be in the position I am in. But sometimes... I wish I could just be a stupid, young adult. Make those mistakes I am supposed to be making. (get a tattoo!!) I guess maybe my next life is when I will get to do all of that.

Here's hoping!!

Update

2009-06-05T19:19:00.002-06:00

So, the doctor did blood tests, and I have no infection! Mom and I kind of thing that I just overdid it when Dad was here. Mom reminded me that as I get sicker, it is going to take longer to recover. That just sucks. It took me 7 days to recover to the point where I wasn't feeling like shit. I am still sleeping 14 hours a day, but I am not sick anymore. If this is going to get worse (and it is), that is going to be what sucks. I am doing fine with everything else... but why can't I do what I want to when my Dad comes to visit?

New Month

2009-06-02T11:16:00.002-06:00

So June is here! That means I have been living with this for 6 months. Man, time moves along swiftly!

Mom has been concerned the past few days. Since my dad left I have been very fatigued, requiring 14 or more hours of sleep each day. And I still don't have a lot of energy!! Well, yesterday I had a low grade fever and started a lupus flare. So I called my nurse. She wants me to go in to my primary care, as I might have an infection in my line. I hope not! I go to Dr Terry this afternoon, and will update this when I know more.

Relaxing

2009-05-29T00:57:00.002-06:00

My Dad was in town, he just left Wednesday. It was so nice to see him!! We did a lot, and at the same time, not a lot. Walked Main St, chilled, went to the movies, visited with family... it was wonderful! It took me 2 days to recover!! But I am recovered now.

And now I have to start doing stuff again. Mom was giving me crap that I haven't cleaned my room in weeks... so I gotta do that. Laundry must get done this weekend (Dean stole my laundry day), and I have paperwork that has to get finished so I can get money!! So wish me luck and keep me motivated!!

Played a wonderful game of Scatergories tonight, and watched a wonderful movie.. Juno. Haven't seen it? Do!! It is great!

Nothing Much.

2009-05-23T09:40:00.002-06:00

Sorry again for the absence! I guess my life is not all that exciting! Well, my Dad is in town! That is exciting. He leaves Wednesday, so I will get to spend some quality time with him. I am not sure what all we are going to do, but I figure we will visit some family, and just chill.

Yesterday I went to Delta with my Grandpa. We had fun! We picked asparagus, and tended the graves at the Pea Green Cemetery. It was really nice.

Today Old Navy has flip flops on sale for a dollar (OMG!!) so I am gonna get a few!! My garden is doing great! And I have a wine barrel that I get to decide what I am doing with too!!

Move it!!

2009-05-16T08:38:00.003-06:00

I am back. I have been since Thursday evening. I tried to post yesterday, but I couldn't get on!! Don't know what that was all about, but I am here today!

The visit with the doctor went well. I look to be doing better than I was! The water retention is from the prednisone, thy are pretty sure. And I GET TO DRIVE!!!!!

To Denver.

2009-05-12T22:25:00.002-06:00

Mom and I leave in the morning for Denver. I have a check up with my doctors! I am excited! Not sure what all they are going to do, so I don't know yet how long I will be gone. I will not be taking my computer up there, so I will update when I get back. I think we are going to go to the Botanical Gardens.

Mother's Day.

2009-05-10T22:26:00.002-06:00

Happy Mother's Day to all my moms!! I got a few well wishes today! Mom got to have breakfast with her granddaughter, then read her paper and go back to bed! I think she got up officially around noon thirty. That is when I got up. I got up earlier and had cereal, then didn't feel well and went back to bed too. Then Niki called and talked to her and her and I went to take Grandpa to the cemetery to leave Grandma flowers. We took some to my daughter's grave too! Then we came back home, Dan made dinner, and we went and got ice cream!

I got my normal sickness this morning, but otherwise I am doing well. Getting excited for a trip back to Denver.

Hoo-Ray!!

2009-05-08T22:57:00.002-06:00

How was today? Let me tell you! It was fairly normal, so that is good! I woke up, had breakfast, got sick, went to sleep again. Then Carson came over and we hung out. For mothers day I had two pictures that she picked out framed for her professionally. She picked them up the other day, so I wanted to see them hung in her office (they look fabulous!!!) I went to her office. Well, I had to show her my catheter, because I saw oozing!!! She made me go to the dr. I went. He said it was fine but to keep an eye on it. Eme had pushed really hard on it the other day, and so it looked like it was just irritated. After putting a new dressing on it I started to itch. And I mean itch!! If you have ever had an allergic reaction you know the itch... so bad it burns! So... I think I am allergic to Chloroprep. Either that or the adhesive. I am not itching any longer, so I think it is the chloroprep. I will talk to my dr about this wed. Well this evening I went with my mom and sis and her guy and baby to the Art and Jazz fest. It was so nice to walk downtown! Alway one of my favorite spots. But it makes me anxious for the farmers market!!

Tonight at the fair grounds, less than a mile from my house, is the monster trucks. I will not be able to sleep until they are done for the night... soon hopefully!!!

No Ice. :(

2009-05-07T23:02:00.003-06:00

So yesterday I over did it. I did a lot. Today I woke up late, for me, at 10am. I ate breakfast and took a shower... then I started to get sick. That nauseous, dizzy, lightheaded, general yucky that I get. And it is so weird. I don't know how to explain it. I told mom that it is like my insides are too warm. She asked if I took my temp... of course I had! It was normal. So I know they aren't too warm, but that is what it feels like. If you have ever had sun or heat stroke you would understand what I am talking about. I have found that taking a shower, standing, eating, and moving around make it worse. Drinking sugary stuff (juice, sweet tea, etc), eating ice, and sleeping are all that I have found to help. So at about 1130 or so I went to sleep. I had eaten all the ice!! Carson ever so nicely told me to just "go make more". Well.... I can't!! Our ice maker doesn't work and we don't have trays.. or room for them. So when I got up at 3 pm I felt better. So I watered my garden (which is growing so well!!). Then I played my new favorite game in the world (PLANT'S VS ZOMBIES!!!!!) Then I called mom, because I couldn't find my bucket for my tomato plant. While talking to her... I found it!! When she got home, we had to go to the store to get ice. When she went to put it in the deep freeze... she found a bag!! yay!! So... we weren't out after all!

Remember yesterday, how I upped my medicine? Well, I think that is why I got sick today. I am not sure, could just be that I over did it. Or it could be both. Not sure! But I will have to see. I am not going up again until I get to Denver.

Well, that was my day. Now to try to get some sleep. Later!!

Too Long.

2009-05-06T09:59:00.002-06:00

Sorry for the absence! I just didn't feel like posting, I think. Well, lets see what happend since my last post...

Not a lot.

I got my bookshelves done! Yay!! Now my room feels and looks a bunch larger!!! Mom had strep. Ew!!! But, I don't think I got it, at least yet! And I go to Denver on Wednesday... but you knew that already.

Today I am going to lunch with my grandpa to the Career Center's Coyote Cafe. Then when we are done hanging out, I am hanging out with my friend Ryan. And Then I am cooking dinner. I have to be careful to not over do it. I over did it Monday when I helped my brother put up my bookshelves, and I felt that for 2 days.

Abby, my brother's girlfriend is done with school and graduates Tuesday. Ashley, my godmother's oldest daughter is also graduating Tuesday, and I assume she is out of school now as well. I would tell you what we got them, but I can't do that!! They read this too!!

I am still retaining water. :( Oh well. Here is a picture of my nieces while they were here.

I'm Good.

2009-04-30T13:36:00.002-06:00

I saw my rheumy today, and my lupus is doing great he said. That is a good thing!! Both of my doctors here are not concerned with my water retention and say that it is related to the prednisone. Dr Faber said that once I get down to 10mg or less each day that I will notice a significant decrease in my retention. I just wish it would go away!! I hate looking like a cherub! I try not to be vain, but I am. Of all of my possible lupus symptoms, it was the ones you could see on the skin that made me scared and cry. The physical I can handle. Does that make me a bad person? I would rather hurt than look bad?

Dr Bull from Denver wants to see me before the appointment I have scheduled, June 9th. So he set it up where I go in on May 13 in the afternoon. Graduation is May 12, so Mom and I will be leaving May 13. We also upped my medicine today, so I am at 34ng. I got my shipment of medicine in yesterday, we upped the concentration of the medicine itself. So I used to use a vial of Remodulin that was 1mg/ml, and now I am using a vial that is 2.5mg/ml. That changes all of my measurments, but I use fewer bottles each month.

Niki and her girls leave to go home tomorrow. We are all sad to see them go. We will miss them! Things have calmed down a bit, we are more adjusted. But it will be nice to have things go back to "normal". Some things will never be the same though.

About a month ago, I found out that my cousin Eric has cancer. They are not really sure what kind he has, but it is very aggressive. It is throughout his entire body, on every organ, and they are working on it. He is a minister of a church in Delta, and has a great support system. Just thought I should mention that. My Dad is going to be coming to town again this month, around Memorial Weekend! That will be nice too!

And finally, I saw State of Play, and I must recommend you see it! I thought it was great! Ryan didn't like it. Just kidding Ryan. He said it wasn't his kind of movie, but it was good. Well, I will sign off for now, gonna take advantage of the quiet and take a nap!

Excitement.

2009-04-26T21:39:00.002-06:00

I am so done with close calls! This morning I had to mix my medicine. I don't look at my pump. It stays in my bag, I only look when I change the cassette or when I hear it beep. When I went to switch the pumps ( I have two) the one I was hooked up to was off!! Yah, you read that correctly, off! I have no idea how long, nor how. All I do know is that I woke up at 930am, took a shower around 10am, and started mixing my medicine around 1030am. I felt ok in the shower, but just afterwords I was noticing that I was really short of breath, and a little light headed. Before you worry too much... No, it isn't supposed to happen, yes there are safeguards that should prevent that, no I haven't called the company yet, and yes I am doing it tomorrow. The nurse I need to talk to is M-F type, and I need to order my next shipment.

As for the wierd things I feel... I was sick again Saturday but not today. I will keep track of that. My nurse in Denver is back on duty Tuesday and I will call and talk to her. And I will let her know about the pump too. My water retention is doing ok. I am again retaining more than I am putting out, you can see it in my face and belly. I start taking just 20mg of prednisone each day tomorrow!! I am not hurting nearly as bad as I thought I would be coming down!

Yesterday I spent the day with my grandpa. It was great! We went to a plant sale, had lunch, went to get ice cream, and just hung out and talked. I loved it. I think it was as good for me as it was for him. He said he had a rough morning that morning and we talked and both of us cried.

Digression, Again.

2009-04-23T12:38:00.002-06:00

Before all of this Pulmonary Hypertension stuff I was having issues with my esophagus. I had gone to Denver to have a surgery and several stretchings here in town. Part of the reason I was so skinny was because I couldn't swallow food! While I was in the hospital I didn't have any problems with that, nor have I had any since. I was assuming that it was fixed. I was wrong. Over the past few days I have run into problems with certain foods again. Not as bad as it was, but I am now fearful again. I now believe that it was the high doses of prednisone that I was on making my throat better. One of the treatment options I was looking at for that were injections of steroids right into the esophagus. And I am not sure if this is related or not...

Also before the PH I would get sick almost every morning. More often than not I would vomit, but not always. I would wake up, eat breakfast and get ready to take a shower. I would hop in, and after a few minutes I would be too hot, like WAY too hot. I would get kinda shakey, light headed, nauseaus, and in general feel crappy. I would hurry out of the shower, and lay down and sleep for a few hours and then be just fine. It reminded me of a mix of morning sickness and low blood sugar. Well, since Denver I haven't had any of those problems! Until this morning. I will have to call my nurse and talk to her. I am just not sure. How much of this is lupus, something else and PH?!? Why is my body doing this?!?

And I still have that DAMN cold! It isn't setteling in my chest, thankfully! But I am still coughing and feel yucky.

Otherwise I am doing well. I am smiling! I have some of my garden planted! And I am enjoying the wonderful weather! I am going to make my nieces matching dresses and me a matching shirt, so I will be busy here as soon as I really feel up to it. Niki is going to pick up the ceramics we painted at Angelo's last week, and on Saturday I will have a bunch of new pictures to pick up from Gene Taylors! Yay!!

Weekend Excitement

2009-04-20T07:50:00.002-06:00

I had a pretty dull weekend. Nothing big happened!! Ok, that isn;t true. With as many people as there are in our house, you know something good happened right?!? Well, On Saturday we went to Juddah's house and watched her and her husband rope. That was a lot of fun!! Tori, Bella, and Eme got to ride horses! And I got to take pictures of it! Being in the sun for that long, I hurt pretty good yesterday. Even if I wear sunscreen, the sun still causes problems. Going out like that is a comittment for 2 days! There was only one big fight between us girls. I won't get too into it... but geeze! Mom and I went to the mall on Sunday. That was fun! We got some clothes for the little ones, and us! I got 2 pairs of capri's and mom got a pair of jeans and a shirt. It was nice to go out just her and I. Then finally Grandpa came over for dinner last night, and that was really nice. He seems to be doing well... all considered. He said he found a letter that Grandma wrote. It is about the family, and he wants us to read it.

I am going to be putting up bookshelves in my room today. That means I will have more room in here!! yay!!!! I can't wait!! And the weather this week is supposed to be wonderful! And I get to plant my lettuce! I am just so excited!!

Cold AGAIN!!!!!

2009-04-16T10:12:00.006-06:00

Yep, you read that right. I have yet another cold. I hope the rest of my life isn't like this, they are draining. I figured I would write about Niki and her girls, since I haven't really done that.

Niki is doing well I guess. She is my sister, she is fine. :)

Tori is is going to be 4 this August, and she is busy!! She wears me out with me just watching her. Always happy, well except sometimes she is afraid of Uncle Joe and Uncle Dean. Fickle. She is so pretty!!

Anabelle was, at first, too much. Always crying, I couldn't handle it. But having been here a few days, and stress levels coming down a bit, she is soooo much better!! I tell her that her smile is wonderful! Her and Eme are wonderful friends. This morning they broke Lala's curtain together! Haha!!

We are going to Angelo's this morning to paint ceramic things. That way they are ready before the girls have to leave. The it will be lunch time and then nap time! I like nap time!! It is quiet! I will take that time to play some WoW (World of Warcraft) and be alone.

Niki and Tori are making dinner tonight, Tori wants tomatoes. I think they are making stuffed tomatoes. I think that sounds really good today! My weight has gone down to 130. So I think the meds are working now, again, for now.

More Lasix

2009-04-15T21:16:00.003-06:00

Well, things are slowing down... I think! Mom did some work today, and Kissy went to work too. I went out with my friend Ryan. It was really nice (we got Coldstone and coffee)! I went to the doctor this morning as well. He is not sure why I am retaining this much water so suddenly. We are going with the theory that my body has just finally reached the point where it can't handle any more of the prednisone. I am down to 40mg per day. And we did decide to do lasix twice a day, so I hope it works. I go back in 2 weeks and we will see! Now I have to take potassium suppliments, which is tricky because it is easy to get poisoned if you take too much.

First Trip to ER

2009-04-12T22:39:00.003-06:00

Turned out to be ok. As you know, I am retaining water. Well, starting yesterday, I have been retaining water a lot more... like my pants are hard to button! And my face is so puffy, and my legs are pretty swollen. So I called my Dr in Denver, and we felt it was better safe than sorry, plus tomorrow is kinda full. So I went in. They did a chest x-ray, ekg, and some blood work. No heart failure, no fluid building up in my liver. So I was sent home with Lasix, and told to call my Dr tomorrow! False alarm!! But this is a symptom of heart failure, so it was important too.

On a good note, our ER procedures are good to go!! It was very efficient and effective!!

Ok, big day tomorrow, I am going to bed. Night!!

Happy Easter!

2009-04-11T23:25:00.002-06:00

Happy Easter to everyone!! I definitely don't celebrate Easter for the traditional Christian reasons and what not.. for me it is very much so a holiday about spring and family. I am so glad it is finally here!!!

This has been a stressful time, and I am looking forward to the joy of having all of the family together tomorrow. Niki and her daughters, Tori and Bella, got in tonight! It was so cute! Eme was so happy to have Bella here and have someone her size!

I am working with the guy at the mortuary to get the photo slide show together, and I got the music set up. I did mom's taxes, and got the eggs ready to dye. I was busy today! And I am ready for bed. For those who are interested, the funeral is Monday at 1pm at Martin's Mortuary here in Grand Junction. Grandma will be buried at Memorial Gardens, the cemetery on North Ave. That is the same one that Holly is buried at, and the same one I will be buried at. She won't be alone! And neither will Holly!

Big Loss, and Gain.

2009-04-09T21:59:00.004-06:00

Grandma passed away at 131pm this afternoon. In the night she was almost lost twice, but held on. They had to pack ice around her because she was running a high fever, and her kidneys quit working in the early morning. She was sedated for the whole thing, so she was comfortable. Her mind never deteriorated to where she didn't know us, and it wasn't her Alzheimer's that took her. It was fast. My aunt from Texas was able to get here at about 1230pm. My uncle from Virginia will be here tomorrow evening, and my sister from Alaska will be here Saturday evening.

Today was a long and hard day for me. I am so tired. I have told my lupus that it is on hold for the next few days, that my mom needs me. I hope it listens... sometimes it does! Mom is ok. I mean, she just lost her mom, she is emotional and needs love and support, but that is to be expected. She is strong for her dad, and sisters. But then she melts when she comes home. I am doing my best to cry when I need to and deal as it comes so she can lean on me when she needs it. My grandpa is the one I am worried about. He just lost the love of his life. He is doing ok. Very upset about some of the decisions that he has made... like not taking Grandma to Texas or Virginia. But we try to let him know that he did right, that we support him, and we wouldn't change anything he has done. He has been a wonderful caretaker. It is a hard job. Hard on both of them. I just hope he takes the time now to be himself, not a caretaker... you know? I hope he can, after he grieves of course, be glad with what he can do. He can visit family, and go camping again. Daddy said that it is going to be hard, he is going to go from that feeling of being needed all the time to not being needed at all. I need him. I am going to do my best to do something with him every week. Go garden with him, or get lunch. I still need to get out of the house, and he will too. I think that would be nice for both of us.

It is bedtime now. Oh yes... about me. I went up today to 28ng. And I am doing well. I had some trouble breathing last night when I went to bed, so I wanted to see if going up would help.. if that is a good indicator of when I need to go up! So I will let you know. I also have sent off all the paperwork needed to start receiving disability (YAY!!!) and guess what?!?!?!?!?!?! It is going back to December of 2006!!!!! What this means... I don't have to wait to get medicaid! Now I am not sure if the medicaid will go into effect retroactivly (meaning it will help cover everything from Dec 2008 to now) or not. even if not it is ok! I don't haveto wait 2 years to get it!! I am going to keep my COBRA because the coverage is soooo good and I have assistance with it. I do have to start learning what medicaid covers and all that and learn about supplimental insurance. This also means that I will be getting back pay at the rate of $908 for sure starting when I stopped working in December! I am not sure, but I think it pays the difference of what I earned to that amount from being considered disabled onward, so the months I didn't make that amount because of health, and what not.. I believe I get paid the difference! I am not sure, and I am not holding my breath. But either way I get to start paying bills!! I never thought I would be happy for that.

And lastly, today is my niece Annabelle's first birthday. I am glad she is too young to know what has happened on her birthday.

I told mom, and some may be mad I am thinking this way.. but this helps me, Now I have one more angel to help me when it is my turn. I couldn't have better angels.

New Prayers

2009-04-09T07:01:00.002-06:00

Today I ask for prayers, but not for myself. My grandma, Mom's mom, is in the hospital. She went in yesterday with stomach pain and was admitted into CCU for pancreatitis. The doctor last night said that she is very severe, that they have never seen a case this bad. She is not expected to live. Mom needs love and support from family and friends right now, and thank you for all of the support you have already given. I will be Mom's acting secretary for the time being, so please contact me for any questions or concerns. We are headed to get Grandpa and take him to the hospital here in just a few.

Last night when we left she knew who everyone was! That is so important!! She has lots of IV's, and is on a ventilator.

As for me I am doing well, I am taking this one step at a time. My wish is for Grandma not to suffer. And I mean it. I am doing my best to deal with this as it comes, my body couldn't handle me putting that off to stress about later. And no one needs problems from me right now!

Yay!!!

2009-04-06T09:56:00.003-06:00

So this morning was/is a good morning! I was eating my Raisin Bran, and I got a call from SSA. I GET MY DISABILITY!!! I am not sure of the particulars yet, but I will be getting paperwork in the mail either tomorrow or Wednesday. I have to get them a copy of my paystubs for November through January, then after they have those I will get my benefits! Yay!! This is a huge stress off of me!

Then this afternoon I got a call from my cardiologist here in town. The echo showed no measurable progress. I am not sure what that means. He said that the important thing is that I feel better. So I take it to mean that I feel better, but I am not showing I am getting better. ...here comes some of tht stress back. damn...

Good Weather

2009-04-05T15:02:00.004-06:00

Today is a nice day! It is sunny, no wind! Just a little chilly. And I am getting so anxious for the warmer weather! I can't wait to plant my garden!! I have been working on jewelry lately (thank you Joan!!) I have been making lanyards for some of the ladies mom works with. (So if you want me to make you one just let me know!) I have also been working on a cross stitch again. I haven't done that in a while. My project is this HUGE picture of a tiger. I got it when I was in high school, and started it a few years ago, found out I had mis-counted, and restarted it last year. Well, now I am working on it again!!

I am doing well with my medication. Breathing better, and what not. Mom and I went to Walmart and Walgreens and I didn't need my oxygen or a cart!! They were just short trips, but it counts! I will use one or the other when we go grocery shopping later.

Oh yah! I finished Scarlett Letter and it is SOOOOO much better than the damn into! Then come to find out I was the only person on the planet that didn't know about that. Argh!! The writing was very dated, but the story was very good. I have to say I enjoyed reading it! Now I have to decide what to read. The Tale of Edgar Sawtale, The Reader, The Illiad, or one of MANY other stories on my Kindle.

Strolling Along

2009-04-03T18:05:00.002-06:00

I am doing well. We are going up to 26ng. Today I am having a little more trouble breathing, my chest is tight.

Today was a stressful day. A friend is having a hard time dealing with his life. He has a lot going on, and is unable to communicate his feelings, emotions, needs and what not to his mom and family and friend. I hope he gets through this, and I hope he knows I am here for him.

My grandpa brought me a tomato plant and a pepper plant! I can't wait until it is warm enough to plant them!! I need to get my seeds going for my other plants. Lettuce, cucumber, beans, and I am not sure what else!

Don't remember if I mentioned it, but I have been retaining water. I started on a medicine for that, and it is helping so much! We are waiting on the results from my echo on Tuesday so we can start tapering me off of prednisone. I learned that it causes your body to dump insulin into your blood, causing you to crave sugar... and in the long term can cause diabetes.

Ugh! This Storm...

2009-03-31T10:38:00.002-06:00

This storm, or rather this series of storms, has been killing me! I have had a lot of pain with it. I think it is because the pressure keeps changing. Last night I woke up and had to take Tylenol 3 because my knees hurt so bad.

Well yesterday was my appointment with my doctor to get the stitches out. That went well! And he said that everything looked good and healthy, no concerns! But my body is fed up with the prednisone now. I am retaining water, and that is bad. Prednisone not only makes you gain water weight, but it also increases your appetite and cravings, and makes you get fat too. I am having a hard time with the cravings. From the time I wake up until the time I go to bed, I CRAVE (not just want... have to have!) sugar. I am not that hungry, I just constantly have to have something sweet. Fruits work... but that gets expensive!! Sweet tea works most of the time, but chocolate is the best. I am geting concerned with the weight gain (30 lbs now) and the sugar part. So today I have an echo to make sure my heart is doing better, that the pressures are more normal, and so long as that is the case I get to start backing down off the prednisone. That is good for the sugar and weight... but my lupus may not like it so much. Once I am down on the prednisone we are going to chheck my sugars, just to make sure that it hasn't effected my insulin and such... I have type 2 diabetes in the family. Just what I would need to get!!

Tomorrow I go see my rheumatologist for a lupus check up. And I am making chicken kiev for dinner tomorrow. I haven't made that in a while!

I'm Retarded!

2009-03-28T10:40:00.002-06:00

So I just spent like the last week forcing myself to read this boring book, all because I wanted to read this classic. Come to find out it was just the intro by the author about his boring life!! Ugh! over 20% of The Scarlett Letter is the intro by the author! Needless to say, the actual book is better than his into. Who cares about his boring life in The Common House!?! Not me!

Well, I went up again the day before yesterday ( so two days in a row). I am now at 22ng. And I am concerned. I have read all of this info on this drug. There are no studies showing the effects/effectiveness of Remodulin in doses above 46ng. The average life given by this drug is 6-8 years, but I am already halfway to 46. So I am wondering... am I just not to the strength I need? Am I responding well, but needing more? Is it going to give me less of an extension on my life? I am not sure. I will have to be asking the doctor next time I talk to him, or Sondra. I am ok with any of these. Even if it doesn't give me as long as others get, I am still so much better than I was before. I am almost normal... even if just for a little while.

Today is my grandma's birthday (69th I hear). We are going out to lunch to celebrate with her! I am excited! And my hair is getting long enouigh to do stuff with. I have been putting it in little piggy tails! I look like a little girl! And today I put it back in frenchbraids. Cute! I am back to normal after my digression last week. And I think I am mostly over this cold. Thank you to all those who have expressed their desire to see me, but have stayed away because of illness! I appreciate it! I hope you feel better so I can see you!!

Up up and away!

2009-03-25T20:08:00.004-06:00

I went up again on my dose today. No headache yet, but I do have pain in my legs. But that isn't as bad either! I noticed that the last 4 days I have digressed about 3 weeks. Hope to see improvement again!

I made a pair of earrings today. I think they are pretty, but they aren't my style.

And I am reading The Scarlet Letter, and I am not sure. The sentence structure is so old. There are way too many commas and other punctuation. Almost like writers then thought that the fewer periods and longer the sentences... the better the writer. That just makes it irritating, makes me want to re write it!! Hahaha! The story so far is good though.

Vacation!

2009-03-21T17:30:00.004-06:00

Mom is on vacation, which means I am on vacation!! *wink* She went to Mesquite, NV with Kristine. It is Kristine's 21st birthday tomorrow. I hope they have fun! Joe is here in Junction with Eme. I made a pretty necklace for Kristine, I hope she likes it! I do. That is the picture I put in this post.

I have had a hard time breathing again, and I think it is because I have that cold again! It isn't as bad, and I hope to keep it that way. I have also been having leg pain yesterday and today, and have been a little shaky.

St. Paddy's Day

2009-03-18T15:59:00.003-06:00

Hello there. I hope everyone had a great day yesterday!! I did. My friend Ryan took me to a party/bbq at a friend of his' house. It was a lot of fun! Found a knitting group to join! And I got to spend some time outside! I hurt a bit today (damn sun), but it was worth it!

I had a talk with my nurse yesterday, and we are staying at 18ng for this week. I will call her again on Tuesday, and we may go up then. I am also trying to use my oxygen less. I went to the store with Kissy today without it, and did fine. I will, of course, still use it when I need it. But I can't tell when that is if I don't go without it some too.

I am making dinner tonight. Joe did tacos yesterday. I am doing a traditional Gaelic dinner tonight. Guinness onion soup and soda bread.

And Rae... I would love to see you, I just don't want to bother you!! So let me know when Meg is better, and I will will be delighted to see you!!