Spring Catch-up

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

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!