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.
Thursday, February 25, 2010
Wednesday, February 10, 2010
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!!
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!!
Friday, February 5, 2010
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!
Tuesday, February 2, 2010
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.
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.
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