Seasonal Depression

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.

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!

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.....

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?!

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

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

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

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!

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

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

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!

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!

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.

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

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!!

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?

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

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

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

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

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

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

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!

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.

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

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.