I’m not sure what it is, but something is compelling me to get rid of anything that no longer holds a purpose in my life. I started with the baby clothes, accepting on some level that, with my health issues, I likely won’t be having any more children. I saved anything that I had a strong emotional tie to, put some things away to give as gifts and sold/am selling the rest. I donated baby toys, the infant car seat and miscellaneous baby things. I went through the blankets, sheets and towels and gave away any we don’t use or don’t need. Tomorrow a truck is coming to pick up some boxes of things that didn’t sell at our last garage sale. I donated my old one man tent to victims of the forest fires. I sent my best friend a package yesterday with some beads and porcupine quills from my collection that I thought she’ll like. I found a necklace in my costume jewellery that I can picture my friends daughter playing princess in. I’ve donated books, clothes, curtains, etc.
I wonder what is really driving me to release all these things. I’ve never been a pack rat and have always purged regularly, but this time I’m finding it so easy to let go of things. Why is it so different this time? Is it to simplify my life? Is it to feel like I’m doing good onto the world? Is it to have less to clean? Is it to accept what’s going on? Is it so that, when I look around me, I only see the things I love? Or, the more morbid, am I afraid I may no longer be here, and I don’t want the burden to fall on someone else?
I see my neurologist tomorrow. I have no idea how the appointment is going to go, since I hardly know how to explain how I feel, or even, what’s relevant to his expertise. The main thing I’m hoping for is to establish whether or not I have Myasthenia Gravis, because then maybe my treatment can finally progress. Things are so up and down lately. One day I feel relatively okay, and can do some gardening and shower and make dinner, and the next day I feel helpless. Last night I felt fairly well and took my dog for a walk after dinner. In total we went 3 blocks, but I wasn’t sure if I was even going to make it home. I was stumbling and had to close my eyes so I wouldn’t fall down. I barely made it back into my bed so I could recover. There’s just so many different things going on that I don’t know what’s a symptom and what’s just part of the idiosyncrasies of my body. And I have no idea what specialist to tell what. I’m being followed by an endocrinologist, neurologist, respirologist and I’m waiting for an appointment with a gastrointestinist.
Chronic illness is hard.
Another appointment down, and more questions gained. This time it was physio. How much do I tell her? What does she need to know? What’s relevant and what isn’t? She had the report from Dr. Fink, the rehab dr. It said that my results for MG were negative, no surprise there of course. The surprise came when I saw that it only mentioned the AchR test. Was I tested for the MusK antibody? What about this anit-gen I read about? One of the most destructive parts of this whole ordeal, emotionally, is the constant question of what’s going on; the constant fear that I’m being thought of as a psychosomatic case; the fear that all these health care providers might be thinking I’m wasting their time and resources. It also scares me that, if they don’t think I have MG, then why are they not really looking for something else? What if I have something else that could be treated right now? What if I could be back at work tomorrow but I‘m just not being taken seriously enough?
I waddled back to my car, deciding I was okay to drive and not needing my husband to pick me up. When I got home I realized that I really, really wanted to have homemade egg mcmuffins for lunch. It’s been a few days since I’ve actually wanted to eat something, subsiding only on yogurt and Boosts, so I decided to make it happen. I knew I could get gluten-free English muffins at the grocery store, but did I have enough stamina left to go buy them? I hummed and hawed about it for almost 20minutes before deciding it was worth a shot.
I parked in the handicap spot and took my placard from the glove box and hung it from the rearview mirror. I always feel so broken everytime I have to use it. To hide my shame about it I call it my “rockstar parking pass” to friends and family, but I secretly hate that thing. When I got through the doors I decided that since I was going through all this effort I might as well buy good cheese, maybe one that’s pre-sliced so I don’t have to do that at least. Fancy cheese was three aisles away from the door. 3 long, long aisles away but I managed to get some nice jalepeno havarti. I shuffled my feet down the aisles at the grocery store, upset that the “hippy aisle”, as my husband and I affectionately call it, was so far away from the door. On my way to get the celiac safe English muffins I was passed by a woman in her 70’s. Sometimes it’s the little things that can just destroy your sense of self-worth. An 8 year old boy stared at me as I inched along the grocery store, no doubt wondering what was wrong with me. Of course, I’m wondering the same thing. It feels like deep down inside there’s a part of me that just seems ready to burst into a run, like if she could just get freed she’d never stop running. She could just cast off the shadow of this body that surrounds her, and never look back. Part of me feels like I have the power to let her out and part of me knows I have no power at all. I’m so lost right now.
Today was also the first day since all this started that I had a drink. It was literally a quarter of an ounce of brandy in a cup of coffee but it affected me nonetheless. It was nice to feel that burning sensation as it went down my throat but the weakness and confusion that came with it wasn’t worth it at all.
I probably shouldn’t have started this blog on such a negative feeling day.
The dream I had last night was far too accurate a metaphor for my life than I’m comfortable dealing with. It was long and drawn out, with many different twists and turns, but the theme was the same throughout: autoimmune disease is always going to try to get the upper hand, but it cannot win. A preteen boy, overweight with short black hair and a round face, represented the diseases. He was always ultimately in control of me, even though I tried to defy him at every turn. Sometimes he pretended to be my friend and I’d start trusting him, and when he had trapped me in a corner or a car he would change personas and pull a gun to my face to try to force me to do something. But I never did because I knew his gun could never kill me, even if he pulled the trigger. I was always trying to run away from him, but no matter where I ran he was already there, even if I had left him far behind me when I started running. There were other elements of the dream; a new large house that my parents had purchased, a stay in the hospital, an old car with a german shepherd dog in it that I had been promised I could keep, a room full of empty chairs and tables, a long circular hallway, a doctor that listened to me, but the main part of the dream was always that boy and how I was either running away from him or behind the gun he had pointed at me. It was a very vivid dream and I’ve thought of it all day.
I had another victory as far as independence is concerned today. I did the dishes from lunch. There weren’t many, and I had to lean on the wheelchair at first and ultimately sit in it, but I finished the dishes all by myself. I couldn’t eat the lunch I had wanted today, which was celery and carrot sticks and dip. It was too crunchy and my jaw wasn’t strong enough. I ended up eating a smoothie and feeling betrayed by my body again.
Even though I’ve posted it online and have tried to make myself believe it, I still haven’t quite accepted the diagnosis of Myasthenia Gravis. Everytime I feel okay I tell myself I’m just fine, and my issues were only temporary and caused by the high dose steroids from the Addisonian Crisis. Then my left knee gives out and my legs feel heavy again and I have to remind myself of all my “Addison Days” with my concrete legs that can’t be attributed to Addison’s disease. In those good moments I also seem to forget about the fact that I’m on medication specifically used to treat MG and that’s the reason I feel okay, not because my muscles are working again on their own. It’s devastating each time I have to relearn that I have this new disease.
Regardless of my defeatist attitude when I write, I am getting better. I can do more everyday and have added two reps to each of my physio exercises. I’m pacing in the house with the walker more and more and am trying to rely on the wheelchair less and less. I refuse to call it “my” wheelchair and instead refer to it as “the” wheelchair. I refuse to take ownership of that thing, even though it helps me a alot. I wish my family would notice my subtle language around it and follow suit, but they haven’t and I don’t really want to point it out to them. I’m not really sure why though.
Today was my fourth day home. I had told myself and my family that I wanted three days to sleep and relax and just recover, and then I’d start working on getting stronger. So today I did just that. I started my day off with a bath, which actually takes far more effort than a healthy person can imagine. Before even getting into the tub I had to factor in what supplies (shampoo, conditioner, razor, etc.) I’d need once I made it in. I still forgot my soap and had to look longingly at it up on the shelf before I decided to ask my husband to come pass it to me. Then I had to make sure I wasn’t going to need to go pee once my feet hit the water, which often happens with me anyway. I put bath salts in the water since, if I’m going to all the effort to have a bath it might as well smell great and make my skin soft. My energy was waning already by this point, even with a coffee in my hand. After I got in the water it was wonderful though. My legs felt lighter, although I found I still put my knees together and twisted my hips so I could lay on my side. I’m not even sure why I’m doing that all the time but it just feels natural at this point. In the water I watched as my legs twitched and sent small ripples through the water. I remember watching that before I was diagnosed with Addison’s, and being scared that I may have Multiple Sclerosis. Myasthenia Gravis certainly never made it onto my internet searches. I would have liked to stay in the bath all morning, but I knew I had to save some energy to actually get clean. I pushed through and managed to shampoo and condition my hair, and wash myself with soap. Somehow I made it into a standing position and wiped myself somewhat dry with a towel. I should have brought my robe with me so I didn’t have to dry myself completely. With my last ounce of strength I hobbled over to my bed and lay down for my after shower rest. My husband came to check on me and dried my legs for me before covering me up with my blankets.
This is fatigue. If you’ve never experienced it before, consider yourself fortunate, and never judge someone who has to live with it. It is not because you’re lazy. It is not because you’re not trying hard enough. It is not for attention. It is purely because everything is difficult and takes too much out of you. I remember crying to the nurses after childbirth, when I was undiagnosed with both Addison’s Disease and Myasthenia Gravis but was going through some sort of crisis as a result of hemorrhaging, that “I just have nothing left. I’m not usually a whiner, but I just have nothing left.” That’s what fatigue is. You’ve dug into your reserves and found nothing. You know that there’s just nothing left to be found at all. You used it to get to where you are.
The rest of the day wasn’t too bad though. I didn’t do all, or even most, of the things I had promised myself I would do today, but I did accomplish some things. I got my son’s laundry together and folded it once my mom had washed and dried it (my washing machine is in the basement, so it will be a while before I can do laundry from start to finish). I made my own smoothie for lunch, and made a pot of coffee. I walked as much as I felt I could without letting my knee give out on me. I played trains and mini-hockey with my boy. I went back to bed for a couple hours after a friend visited, but couldn’t fall asleep which I actually take as a good sign. My mom said a few times today that she was surprised at how much I was doing, and cautioned me to take it easy. I did okay today. This road back to normal may be longer, bumpier and have a bit more twists and turns to it than I’m expecting, but today I did okay.
(3rd night home from the hospital) I can add putting my son (3yo) to bed to the list of things I can’t do right now. He totally took advantage of my fatigue, and played me for a fool. He tried to control and change every aspect of the bedtime routine, and I didn’t know what was actually new and what he was lying about. It culminated to him biting me, me having to yell for my husband, and then a massive tantrum. He hit me multiple times, but you can only get away so fast when you need to rely on a walker to get around (the wheelchair doesn’t fit in his room). In the end the boy is in his room, I have a bite mark on my hand, and the Thomas the Train book is put away until it heals. I did get a kiss on my hand, although he was pretty mad when that didn’t mean he got his book back. Also, my husband was the one who finished the bedtime thing, as I had no energy left.
There’s so much grief that comes with a diagnosis of a disease, maybe even more so when it’s a second, third or fourth diagnosis. There’s a point in the process where you blame absolutely everything on the illness. Three months ago our son just would not go to bed. He was absolutely awful and the bedtime process took a couple hours and involved many tears on both sides. I took to referring to my son as “my little a-hole” whenever I talked about it. We tried everything to get him to go to bed well again and in the end it was stickers as a reward for going to bed well that got him to finally snap out of it. My point is though, there wasn’t a time through all that where I believed he wasn’t going to bed because of my hypothyroidism or my Addison’s disease. It was only because he was a three year old and three year olds suck sometimes. Tonight though, in my head and heart at least, me having Myasthenia Gravis is why he wouldn’t go to bed. Me leaving him for a month to be in the hospital, no matter how hard I worked to stay alive during that time, was the reason for the tantrum. Everything that happened tonight was the fault of me having Myasthenia Gravis. It goes to show how you can really get hung up on blame. But when you blame the illness you relinquish control yet again: you let it gain more traction in your life.
Today was my third day home. I slept the first day, most of the day, and it was great. I didn’t have to feel like anyone was judging my progress or thinking I wasn’t being positive enough. I didn’t have to tell anyone about my bowel movements or get my blood pressure taken. No one took my temperature, which was the biggest thing I hated in the hospital because it made me feel like such a baby. I slept for much of my second day home too, but I did accomplish one task. I had a mason jar on the counter filled with vinegar and orange peels because I had wanted to make my own cleaning spray. Yesterday I drained it through a coffee filter and finally finished it. Let me tell you, after 6 weeks of soaking, that’s some nice smelling vinegar! Today I slept in and took a nap, but also tidied up a bit, or at least what I could do from the wheelchair. I also emptied the duffle bag I lived out of in the hospital. Tomorrow I start living again. I said I’d give myself three days to sleep and recover before I started pushing myself again. Tomorrow I will get outside. I will walk more. I will clean up after myself. I will spend less time online trying to figure out how to make life work with all these diseases and just figure it out as I go. I will call my employee assistance program and get some counselling before this turns into a major depressive event. I will stop eating so much junk food (even if it is gluten-free).
We’re going to rearrange the house a bit to make things easier for me. Our bedroom is impossible for me to maneuver around. The wheelchair doesn’t fit at all, but even the walker is a giant pain in the butt. I think I’ve figured out how to make it better though. Maybe tomorrow we can figure out how to move it around. My husband is taking two weeks of stress leave. He needs it. Every one of us is going through a major change and it’s devastating for all of us in different ways. At this point he’s smart to rid his life of any stress he can. Life and loved ones are more important than work, and deserve more of your energy.
I’ve officially been in the hospital for a month, but it was February so it was the shortest month at least. If it wasn’t February maybe I wouldn’t have breached the month mark. I’m going home really soon though. My fingers are crossed for tomorrow. The dr. thinks I can go but the physiotherapist and occupational therapist want things in place first (wheelchair, walker, tub seat, etc.). I just want to be home. People keep asking me if I’m bored and the truth is I’ve been too sick to be bored. It’s only been 1 1/2 days that i’ve felt really better. In truth I can’t wait to be bored, at home! I’ll be able to read and write and play and cook and clean and visit with friends. It’ll be a great feeling to be bored. it will mean I’m healing.
Health is so fickle isn’t it? I keep thinking of myself as healthy, even though I have all these diseases (hypothyroidism, Addison’s Disease, Myasthenia Gravis and Celiac Disease). But I consider myself healthy still because I’m not overweight, I don’t smoke or drink (that much), I exercise and eat an organic vegetarian whole foods diet (most of the time), and because I’m young. I couldn’t imagine what it would be like to be diagnosed with something preventable or something you could really blame yourself for, like cancer from smoking, liver damage from drinking, or kidney damage from poorly controlled diabetes. I don’t think I’m going to stop thinking of myself as healthy. I don’t want to be sick, and I won’t let these new diagnoses control my life.
Dammit. Now I have another disease: Celiac. I’m not happy about this one. I love gluten and have silently made fun of all those people who go gluten free because it’s the in thing to do right now. This is going to be really hard on the road with work. Try going into small town Saskatchewan and saying “Hello. I’m a vegetarian and have celiac disease. What can you make for me?” I’m going to have to travel with all my own food. And beer! Ahhhhhhh, I can only have gluten-free beer now! I’m not a huge beer drinker anyway, but I do love my stouts now and again. Dammit Dammit Dammit. Just yesterday I was talking with my friend that owns a bakery in central Saskatchewan, who I met because of field trips, and I told her that her rye bread and cinnamon buns might just cure me. It could still be true. If you’re ever in Wynyard, Saskatchewan check out the Wynyard Bakery. It seriously has the best rye bread in Saskatchewan. And while I’m promoting bakeries, the bakery in Consul, Saskatchewan just so happens to have some pretty good eats too. My favourite there is the cinnamon buns, but I guess I’ll have to start buying more of their gluten-free bread. It truthfully is the best gluten free bread I’ve come across, and I usually brought some home for my non-gluten friends. One of my best friends will be secretly pretty please about this. She’s been telling me I needed to go gluten free forever and I keep telling her to shut up. And now she’s right, which she’ll rub in my face quite a bit. It’s a good thing I love her (and she makes really tasty gluten-free cookies and cakes).
I finally posted this on facebook:
“On February 12, after weeks of being sick with a virus I had an Addisonian Crisis and was brought to the hospital by ambulance. 4 days later when I couldn’t move my legs we all realized something else was wrong. We went through some rough times and frustrations in the hospital, with some definite deficiencies in the level of care received, but thanks to my wonderful husband and my incredible mother, finally got paired up with the correct (and competent) specialists. I’ve been diagnosed with Myasthenia Gravis and Celiac Disease. So many of you have done so many wonderful and varied things for us throughout this difficult period, and I can’t thank you enough. I should be going home very soon, with supports in place for me to continue the healing process. We’ve got a long way to go still, but have seen definite improvement and will continue down that road until life is back to normal. For those of you who want to learn about MG, check out http://www.myasthenia.org, for those of you that want to learn about it the humourous way, check out this video. https://m.youtube.com/watch?feature=youtu.be&v=LBiz_41ucp”
On some level it feels good to get it over with, and also as if I’ve accepted it on another level of consciousness. On another level I feel very exposed and raw, but I owe it to the people that love me and have blindly supported me to be able to give it a name. Things are easier to understand and accept when there’s knowledge that goes along with it and my people deserve that.
Yesterday evening was the first time I really felt like I was getting better. I’m not even quite sure what made me feel like that. Possibly it was because I had some energy. I took a nice long shower, I had to sit on the bath seat, but still, I had the energy to stay in there and enjoy the water. I really want to go swimming. I just want my legs to float and be light.
I am intrinsically linked to water. I’ve asked friends and family to offer tobacco into rivers, lakes and oceans for me and my healing process. It’s something I do regularly before camping trips, some field trips and whenever I feel I need to pray in some way. I’m not really sure what I believe as far as religion goes, but I do believe in nature, and feel most connected to water. I’ve been having so many dreams about water. I’ve swam down rivers, over waterfalls and in lakes. I’ve driven beside overflowing streams and crossed bridges over rivers. I’ve camped on islands and beaches. What I can’t do physically I’ve been doing in my dreams.
I had another EMG test yesterday and it showed nothing. The blood work came back and it also showed nothing. Confirmation would be really nice at this point, but that confirmation might not come. Apparently with Myasthenia Gravis, in 10% of cases nothing proves it. I might be in that 10%. My mom brought up the fact that, when I was 6, it took 2 years after my symptoms appeared before my hypothyroidism showed up in blood tests. She also reminded me that I was tested for Addison’s Disease when I was a child.
The next person that tells me to be positive is going to get punched in the throat. Don’t tell me how to deal with this if you’ve never been through it. I’m being very positive about my long-term recovery, but I’m somewhat realistic about what’s going on right now. I can feel whatever I want or need to feel, and being treated like a child doesn’t help me feel in control. I am the only one that really knows what’s going on in my body and, other than being in denial about the diagnosis, am doing pretty damn good I think. The neurologist told me this morning that my crashes aren’t typical in myasthenia gravis, and wondered if it was depression. I just really don’t think I’m depressed even with all that’s going on. I’m laughing with my friends and family, laughing watching Trailer Park Boys, and smiling at the workers in the hospital. Since the high dose steroid effects have worn off I’ve only cried a few times, and mostly with my mom when I told her some fears I had. I haven’t once thought about self-harm, suicide or running away (like I could do that anyway). Could my crashes be related to Addison’s Disease or simply exertion? This is getting so frustrating and taking so long.
I walked more today: down the hall twice. Everyone here (nurses, dr’s, PT, etc.) is happy about that but it’s just so hard for me to get excited about it when just a month ago I was doing everything. Yes I see that it’s improvement but I’m not going to throw myself a parade for walking 20m with a walker. I’ll be excited when I’m biking again, or can walk without needing the wheelchair behind me for when I tire out. I can celebrate my own victories, not the ones they set out for me. My victories have all been about independence and when they choose what I should be proud of, they rob me of some more independence. I was really happy when I could shower on my own, make my own bed and make my own coffee in the morning. Maybe I need to concentrate on whatever step will gain me more independence, and start working on that.
I have bruises and needle marks all over my body. Everyday for 24 days I’ve had an injection in my stomach of blood thinners, I’ve had numerous blood tests, sometimes twice a day, and I’ve had numerous IV’s and IV attempts. Luckily, I’m finally moving around enough that we don’t have to worry about blood clots so I can stop the blood thinners. Just in time too: my stomach looks like a connect the dots picture.
My husband is looking tired and my mom is looking thinner. This has been a lot of stress and hardship on them, and they still have to take care of life, work, and a toddler. When I’m tired I get to take a nap, but they have to keep going. It’s also entirely different worrying about someone you love than worrying about yourself. I’m privy to so much more information about how I’m doing and how I’m feeling than they are. I did find something I could do to help them out though. I ordered a couple healthy frozen meals online and I’m getting them delivered to the hospital. Hopefully that lightens the load a little bit for them and gives them a bit of some down time.
My husband and son came to visit in the morning and I had enough energy to really play with him, albeit while laying down in bed. We’ve been playing like that for months though. I am possibly the best train voice while hiding under blankets that there ever was! My mom showed up too and we all went down to the cafeteria for lunch. My son had a huge tantrum though because I wanted to walk with the walker for a bit first. It’s amazing how much a kid can scream while his mother hobbles on down the hallway for 20m. I was proud of him when he finally said three times very loudly “HUG HUG HUG.” I got him to sit on my lap and I gave him a hug. Then he talked about why he was so upset, which I had already figured out. He didn’t like that we were doing something different. He expected his trains to go on the wheelchair, mommy to sit on the wheelchair and him to sit on my lap. We didn’t really take the time to explain to him what was different about this outing. Once he had calmed down and we had talked about it we wheeled back in and he apologized to the nurses for not following the hospital rules. Of course we can’t let him get away with that type of behaviour, but I really do feel for the kid. He’s only 3 and his world has been turned upside down. I don’t blame him for being upset with change, even a small change. We’ll have to make more of a concentrated effort to tell him when things are changing, even little things. It’ll be nicer for all of us if we can avoid the tantrum and consequences altogether. Dealing with that really robbed me of some precious energy and I pretty much fell asleep during lunch. When we got back to the room I went to bed and slept for 3 hours, hardly opening my eyes when the nurses hooked up my IVMG treatment and vitals monitoring.
Tomorrow will be a busy day. I should see the neurologist, a cardio-something-or-other about the CAT scan of my thymus, the physiotherapist and occupational therapist, and I also will be reassessed by the doctor from the rehabilitation hospital. I’m tired just thinking of all of that activity.
I still haven’t announced my diagnosis of Myasthenia Gravis online.