Christmas Eve

December 24, 2016

All I want for Christmas is enough energy for my sons memories of this special time of year to be positive. I’ve had a rough week – very bad chest pain that’s reduced my afternoons to naps that I just can’t make myself get up from. Each day I’ve had to put something off until the next, and I’ve felt the time slipping away. There are things that aren’t going to happen, things that I’ve given up on as a trade for energy to make it through the day. 

I have peace with the things I’ve given up through. I’ve prioritized my tasks, and put the utmost importance on being able to be present for the laughter and joy that’s happening in my house. This is personal growth, and I know my son will benefit from a mother who puts happiness and presence above the other Christmas “things” and events. 

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Back to the Beginning Again

December 20, 2016
I saw Dr F, my endocrinologist today. He was apologetic about how long it had been since appointments and I told him the hoops I had jumped through to try to get in to see him. He said they had had issues with the receptionist, that were resolved now. Nevertheless, I made sure to book my next appointment (April 26), before I left. 

He was pleased with my progress, but said my thyroid and Addison’s labs still didn’t look good. We went over the last years history and I told him what I was planning to, which was that all the other specialists I’ve seen blame Addison’s or a fabrication of my mind. He said, with how my symptoms are presently, that Addison’s and hypothyroidism could be the cause and that it may be that I had a really bad crisis, followed by smaller crisis and poor Steroid replacement. It somewhat contradicts what he’s said in the past, but my symptoms were far more severe then. I’m not quite sure what to think in that regard. I really just want to hold on to the hope that I don’t have any more diseases. 

We talked about steroid options. I had wanted to try prednisone instead of hydrocortisone. He listed a number of reasons he doesn’t like prednisone, but listed to what I was asking. In the end we decided that I will try a higher dose of hydrocortisone for a month, then will switch to prednisone for a month to see how I feel. In the end he said he’ll go with what I decide, but offered his reasoning. Really, it’s about as perfect a doctor/patient exchange as I could ask for. He thinks I have an issue with malabsorption because of Celiac disease, which could affect why I need a higher dose. He wants me to be very liberal with stress dosing, and take extra before a long walk or my aquasize class. When my husband and I described my crashes, Dr F thinks they happen because, even though I’m no longer pushing my body to extremes, I still push until I crash. I both have daily or weekly low cortisol times and also don’t let my body fully recover from those times.

He did advise me not to go back to work yet though. He said we know how I feel now, and we’re trying to improve it with medication experimentation, it’s not the time to add in another variable. I understand that and, as much as I don’t want to, have to agree. Truthfully I’ve been very scared of working. Even for a few hours I’ve been fearful of just having to wake up and shower, without having the luxury of time to lay down afterwards. 
I left feeling very pleased and hopeful. Again though I feel like I still don’t give Addison’s disease the respect it deserves. The chest pain is still a nagging thought though. It still doesn’t seem to be typical, even though I should have come to loathe that word by now. He reiterated how complicated and unique my situation is. Because of the internet and the ease of finding a support system it doesn’t seem that rare to me, but it is. 1 in 100,000. 2 of us within the city limits. 

Sometimes when I look back on this saga I’m amazed that I’ve made it this far. 

Hourglass

December 6, 2016

Well time is officially running out. The wheels are in motion with disability for the end of my 2 years, May 17. I would officially lose my position, my career, my dreams. Dr P (family doctor) got forms to fill out so I had an appointment with him. My thoughts were so jumbled and I didn’t really know what to say, so I just let it all out. I have been feeling better lately. I can walk and I use the cane only occasionally, when I’ll be out and want some support in a store. I use the walker when I’ll be out and need to sit down (Rememberance Day service, Santa Clause parade). I haven’t used the wheelchair since the airport in July. I have been thinking I can do some office work. I still need to lay down every afternoon, but generally have good mornings, and have been able to make plans with people and generally keep them. I haven’t gotten sick since early August, which might be a record for me. I’ve been doing Aquasize for 12 weeks and have only had to miss 2 because I wasn’t well enough. 

My symptoms persist and the chest pain is still near constant. My fatigue is still overwhelming at times and I still need to rest after a shower. I still have lower back/flank pain and blurry vision. My brain fog hasn’t been too bad lately. I still have days where it’s really difficult to breath. Walking is still very tiring and I still have concrete legs. But it’s all manageable right now. My fear going back to work is that my lifestyle is what’s making the difference. I sleep between 8 and 11 hours a day, and still rest in bed. If I start a chore or project and deplete my energy I lay down until I can try again. I don’t shower everyday. I wear sweatpants and comfortable shirts and sports bras. I make supper in the afternoon or morning when I’m feeling better. My fear is that, without these luxuries, I’ll go back to feeling like I did before, and I really don’t want to feel like that again. I’m not even talking about how I felt when I was at my worst in the hospital. I mean before, when I was getting bad. I don’t want to go shopping with a friend and secretly wish I could lay down in the aisle. I don’t want to come home from work, make supper and then go to bed at 8. I don’t want to feel like my legs can’t support my body. I don’t want to feel like a failure because I can’t do what I want to do. I don’t want to limit my water consumption so I have to walk to the bathroom less. 

I don’t know if I have a choice in that though. I don’t know what disability insurance expects my life to be like. I don’t know what life is supposed to be like. How do healthy people feel? All I can remember is a time that I didn’t factor in those things. A time long ago that I woke up in the morning and just… did. It all just happened. I showered and shaved and ate and cleaned and walked and just generally…did. I may never just “do” again. 

I’m still not giving up on a diagnosis. As always I have a plan for the next step. Genetic testing still, once I tracked down the number and found out that it’s only supposed to take about 3 weeks to get in. I’ve been waiting over 3 months. I asked for a referral to a rheumatologist, but that wait is 36 months. I still plan on practically begging my endocrinologist to help me. 

When I saw Dr. P and said that all the other specialists either blame my Addison’s disease or tell me it’s all in my head he cut me off and said “It’s not in your head.” No matter how many times he says that I’ll never tire of it. 
So the plan, after I see my endocrinologist, is to start a gradual return to work. 4-9 hours a week for 2-3 months at an office job to see how it goes. 

All I can do is try. I’ve made it this far, and I just have to keep going.