Blast From the (Medical) Past

February 14, 2017

I bought a new coat today. My weight is steady, but still much higher than I’m comfortable with. The only warm coat that fits is a colour that doesn’t look good on me and clashes with all my hats and mitts. The North Face store is having a big sale and, sick of feeling unconfident when I walk out of the house, I decided to take advantage of it. I found a great 2 in one jacket, in a colour I like and that flatters me, for 50% off. Unfortunately I brought my purse but neglected to bring my wallet, so I had to go twice. 

The second time I went back I recognised a fellow shopper as a doctor, but couldn’t place him in my past. He was tall, had a dark brown complexion and a mop of greyish black straight hair. He was shopping with his wife and two children a couple years older than my son. His height struck me as his defining feature, but I couldn’t recall if I knew it in relation to myself standing, walking, laying down, or in a wheelchair. 

It took a few minutes, but in the end I remembered him: Dr M, the internalist that diagnosed me with Addison’s Disease 4 years ago. I went up to him, reached out my hand and introduced myself as such. I didn’t know what I intended to say to him, but it all came naturally. I told him that I’ve had other health problems and nothing has been diagnosed as quickly as he diagnosed me. I said I appreciated how well he listened to me and, from the stories I’ve heard from other Addisonians, I was very fortunate to get such a quick diagnosis. He smiled and, from his remark about sending me to ER, I knew he remembered me. 

He asked how I’ve been, twice, and I said that I’ve had other health issues that aren’t being figured out nearly as easily, but I didn’t really go into it. It wouldn’t have been appropriate and I doubt it would have done me any good anyway. He shook my hand again and we parted. His wife’s face beamed with pride and I felt good for having given credit where credit was due. 

Hospital Times Two

February 6, 2017

I didn’t even get a chance to write about one ER visit before I was back for another. I took myself in today. For 4 days I had diahrea and was feeling worse and worse. It was at the point where I didn’t know if gastrointestinal symptoms were causing Addison’s symptoms, or if Addison’s was causing gastrointestinal symptoms. The days leading up to this I felt so alone and not understood. Each extra pill I took I felt like my husband was condemning me for it, even though I knew I needed it. As I got more sick and confused it hurt emotionally more and more. He’s supposed to be my advocate yet won’t learn anything. I’m afraid he won’t be there to save me when I need it. 

So this morning, when I woke up and voided every bit of fluid and the little food I ate the night before, I knew I had to be the one in control. I had to make the decision to go in before I lost my resolve, became confused, and just went back to bed. It was the first time I’ve gone alone to the hospital. Part of me didn’t like it, but another part of me didn’t care. This illness is my lot in life, and why shouldn’t I carry it alone sometimes? We as a family still had stuff to do that day: getting the basement ready for my cousins visit, my son had a birthday party to go to, general housekeeping and chores. Why should none of that happen just because my body is defective?

So I took myself, and I spoke for myself, and I managed by myself. Going was the right thing to do. I was so dehydrated that they couldn’t get a vein, and didn’t even bother trying the regular spots. For the bloodwork she even went in the top of my hand. Each spot they tried is now replaced with a purple bruise. One is even a centimetre away from the one still healing from my fall down the stairs after my experience at the dentist, which I never did write about and now probably won’t. 

The abridged version is that while trying to yell to my dad in the basement I fell down the stairs and dislocated my shoulder. I’m not sure if I fell because I got weak and my legs or ankles buckled or if I passed out for a second. It was more painful than anything else I’ve ever experienced. I had pain medication while in the hospital but passed down the prescription for home for fear of being labeled a pill seeker.

It’s been a rough few weeks. 

I’m so worried about what my son is absorbing throughout all of this. Two days ago he was sick too, with a sore throat, and I couldn’t be the mother I wanted to be. I wanted to tuck him into a freshly made up bed on the couch, and bring him tea sweetened with honey. I wanted to read him books and stroke his hair. I wanted to massage his body and bring him popsicles. But I could only do any of that in 5 or 10 minute spurts. The rest of the time I lay in bed sleeping. During one long nap he wrote me a beautiful note and made me a present. He wrapped it up and hid it, then made me a treasure map so I could find it. I was so touched. He always finds something to do when Mom is sleeping. 

I’m crying now. Illness keeps robbing me of myself. 

When a Cavity Can Be Lethal

January 19, 2017

Yesterday I had a cavity filled. I was nervous about it, since it was my very first cavity in my 34 years on his planet. I read up on filling cavities and Addison’s disease considerations. I decided to take an extra 5mg of hydrocortisone, and told my husband my plan. I thought I had things under control. 

The dentist froze me and left to let the freezing set. I stared to feel strange: confused, dizzy, nauseous. My heart started beating quickly and I stared trembling. I was going to have a seizure, I could feel it. I concentrated on breathing slowly. In and out, just stay calm and wait for someone to get to me. Breathe, don’t give in to what your muscles want to do. Breath. In and out. Plan. What will you do when they come in. Ambulance? Breathe. Slowly. Don’t give in. Don’t get scared. In and out. In and out. 

The hygienist and dentist came back. I tried to explain. “Something’s wrong” I said. That’s what I always say when I need help. I can’t articulate what the problem is exactly, but something is wrong. “I need my pills”. I tapped my Fitbit and showed them my heart rate – 140bpm. Something’s wrong. They got my pills and I took one, they gave me oxygen. My heart rate went down and my muscles started listening. “Call my husband”. Down to 120bpm. I took another pill. At that point it seemed better than going to the hospital and getting 100mg solu-cortef in an iv. Heart rate down more, getting coherent. Kept the oxygen on, to be honest, I absolutely love getting oxygen. It makes everything seem so much easier. Each breath feels like the equivalent of 10 regular breaths. I’ll take oxygen anytime it’s offered. 

By the time my husband got there I was okay. His reaction really disappointed me though. He didn’t say much, but I felt like he blamed my nerves. I felt like what happened was my fault. I felt like he failed me as an advocate. I said I wanted to take another pill and he said I shouldn’t. I felt like a wimp. 

Since I was stabilized and was already frozen and had already used up so much time, I asked them to carry on with the filling. He drove me home afterwards and I felt like a failure. 

Later that morning I learned that epinephrine in dental freezing can lead to Addison’s Crisis. I had once again come dangerously close to crisis and came out on top.

That afternoon I became suddenly weak and fell down the entire flight of stairs to my basement, dislocating my shoulder in the process. But that story, and that crisis averted, is for another day. 

Putting It Off

´┐╝January 9, 2017

It’s been happening for over 2 years now. The feeling that my insides were falling out. I told one doctor in ER, back in February 2015, when I lost consciousness. Since then, and because of all I’ve been through with doctors and specialists, I’ve been too scared to bring it up in any appointment. I’ve prioritised my symptoms based on what limits my life the most, and just a bad “feeling” didn’t rate in the slightest. It got worse and worse though, as time marched on. It became harder and harder to use my menstrual cup, and having to shift things around up there made me almost throw up. 

A few weeks ago I finally got the courage to hold up a mirror and have a good look. I don’t have much experience looking at vaginas, but I was 90% sure that what I was looking at wasn’t what it used to look like. For all the naked women on the internet, there is precious little information or pictures of what a woman’s private area is supposed to look like, so I had to let someone in on my secret. 

My best friend got a text one day that read “I need you to do me a favour, and it involves your vagina and a mirror.” All women deserve to have a friend they can open up to completely. She (and her sister) confirmed what I had suspected: I likely have a prolapsed uterus and need to get it checked out. 

I had the appointment this morning with Dr. P. He didn’t do an exam, just took me on my word when I said that I believed I had a prolapsed uterus and sent in a referral to a gynaecologist. I left saying “what a pain in the ass” to which he agreed. Dr. P has always been a bit uncomfortable with women specific issues and it certainly was no different today. The perfect word to describe how I felt about the appointment was dread. I’ve had so many appointments and seen so many doctors, but I was dreading this one the most. I pictured Dr. P giving me crap for not getting it checked sooner. I didn’t want to start the process of dealing with it. I don’t know how it will affect my fertility. I didn’t want Dr. P to do the exam, at this point he’s such a big part of my life it would be like having my boss inspect my vagina. 

As much as I was dreading it, I do wish he had done an exam. It’s hard to explain, but even though I can see an internal organ when I look in my vagina I still wanted his validation. I can’t prove any of my other symptoms and I want nothing more than to be able to. This is another side effect of being undiagnosed: you learn to stop trusting yourself. 

So there we have it, another medical issue to be addressed. I’m not sure when the referral will go through but Dr. P told me I can start calling the office after 2 weeks. I do plan on picking the gynaecologists brain and asking about conditions that can cause a prolapsed uterus, since I’m relatively young and have only had one child. It’s possible it’s all connected and perhaps this will be just another piece of the puzzle that is my life. 

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. 

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. 


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. 

Unfinished Thoughts

November 13, 2016

Disabilities are not easily defined. I used to think it was black and white but now I know there are many shades of grey. Using a wheelchair one day does not mean it’s necessary everyday. Taking the elevator doesn’t mean you’re incapable of climbing stairs. Wearing glasses doesn’t mean you’re blind without them. 

Knowing all that doesn’t make me any less hard on myself though. I had a good day today, I even went to Walmart and was frustrated at a person in front of me walking slowly. It’s been a very long time since that happened. It translated into my old self doubt of course. Thinking I can just will myself to be better.  

Mourning Club

November 7, 2016
My friends father died after a long battle with cancer and his funeral was today. It was a Monday, at 11am, and myself and 2 other of his friends were there. We sat together and at one point I realized why the three of us, out of all the other friends he had, were the ones who made it a point to be there. We had all lost close family members. One lost his father. Another lost her mother. And I lost my sister. It felt like a little club that you don’t want to join, but once you do you realize how to truly be there for the newcomers. I was glad I made it. 

I brought my son, since I had no other real choice. He missed his last swimming lesson because of it, but he wasn’t going to pass anyway because of the lessons he missed with his broken arm. I called two people the night before and asked if they could take him, but it didn’t work out. He starts a new swim class next week anyway. He was more well behaved than I could have even dreamed of. It was a Roman Catholic service, and lasted over an hour and a half. He sat quietly and relatively still the entire time. One woman behind us gave him a dollar for being so well behaved. Afterwards a few women commented on how good he was. My friends both told him they were proud of him. I was so proud of him. Halfway through I whispered to him that I was proud of him for behaving so well, and his smile brought warmth to my heart. 
He’s so balanced. He can do that, and then he can also act like a regular 5 year old. Right now he’s standing on his chair, with slime on his socks singing “lalala I have fancy shoes!!”. 

Being at the service was difficult for me. My thoughts and feeling in religion are fairly aggressive and angry as of late. The whole premise just seems so ridiculous, and I can hardly differentiate between organized religion and cults. The rituals, the priests clothing (5 of them), the stories of Jesus; it all seems so obnoxious. My friends father died last week, yet here we’re being told to mourn the death of someone who died over 2000 years ago, but then went to nirvana. Sorry, but why should that elicit sadness in the first place? There’s too many cracks in the storyline. 

But why does it all seems to matter to me now? What is the need to ask myself the hard questions? It’s been almost 2 years since this illness started. I no longer feel close to death anymore, even on my worst days I know I’ll wake up in the morning. Is it just part of the quest to redefine who I am now? At my councelling session this week we touched on the fact that I need to accept who I am, and who I am is not necessarily my likes, activities or career. For some that may seem obvious, but for me my entire life was built around nature and now I can only admire it from afar. Out in the open Canadian landscape it was easy to feel a presence of some kind, one that as a child I called God. Turning away from that is intimidating, but necessary. 

Trying, Still

October 27, 2016

I took my boy swimming this morning. I’m 1 date late for my period, and I know I will just get weaker and more fatigued as my period gets later and later, so I thought we’d do something fun while I still could. We had a great time, I chased him around being a “kissy-fish”. We swam together, he jumped off the diving board and went down the slides for almost an hour. My legs feel so great in the water: so light and easy to move. I’m so happy that he still wants to play with me, and still likes being with me in public. Every time he places his hand in mine when we cross the street I smile and love him just a little bit more. These days won’t last forever, and I’m cherishing every one of them. 

The fat guy is coming for his visit on my chest. I’ve been thinking about trying some of the mestinon I still have left instead of an Aleve if the pain gets really bad. It seems like it’s up to me to figure this out and learn to live with it, so why not?

I made the call to the neurologist and found out that I was referred for the genetic testing. I know the doctors name, but couldn’t figure out his offices phone number to call and see what kind of a timeline I should expect. I also called my endocrinologists office and got an appointment for December 20. It’s not much progress, but I did something at least and can feel like I’m trying. 
It still amazes me how quick I am to devalue my limitations and symptoms. I’ll have a good day, whether it’s because I did no activity or I just legitimately had a good day, and I leap right into thinking I can go back to the way my life was before. I picture myself on field trips, riding quads through the open prairie, or drilling holes in rivers on sunny winter days. I picture family hiking trips and day long mountain bike rides. I picture being an equal labourer for landscape and gardening projects. I’m still not sure if it’s because I’m naive or because I don’t want to let go of my dreams. 

In the car my son asked, once again, for a sister or brother. He worded it “Can you have another baby in your belly?” I answered truthfully and openly this time. “I’m too sick to have another baby.” He remarked that I could have another baby when I wasn’t sick anymore. To which I replied that I may always be a little sick. I’m able to say it to him but not to myself. I don’t want to give him false hopes, but I don’t want to give up on them for myself. 

I don’t want to be in this situation, but I’m learning so much about myself and life in general. The human spirit and the drive to survive astounds me at times.