The “A” Word

August 30, 2016

So much for my hopefulness with the latest neurologist. We saw him this morning and he said he had never said I had Hypokalemic Periodic Paralysis and that my symptoms weren’t typical. It felt like he had read my chart and decided he wanted nothing to do with me. Anxiety was suggested, which I think is just a cop-out for doctors. They’re quick to suggest anxiety, even though my symptoms aren’t typical for that either. I wonder if psychiatrists ever get upset that all other specialists feel they can diagnose a disease that doesn’t fall under their area of expertise.

I was nervous today. I had a hard time answering questions and making myself clear. I didn’t come off well. I could hardly even tell him my symptoms. The doctor came in and almost immediately stated that he had never diagnosed me, and had merely suggested it. It was just awful. Just another awful appointment and life experience for me to push myself through. Now another awful post appointment period for me to deal with. Another devastating blow to my sense of self. Another period of time for me to wonder what will happen to me. What my life will look like in the future.

Chronic Fatigue Syndrome maybe? I don’t like having to be the one to try to diagnose me. When you go in to an appointment with a possible diagnose it hurts the Drs precious little ego, but at the same token no one really cares enough to try to find anything out at is point. I hate all of this. I wish I could just close my eyes and wake up in a new body.

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Loss and the Balancing Act

Aug 25, 2016

I went to a retirement party for a colleague tonight. It’s been a long week already, with renovations starting on the basement, the boy in a cast, and me getting my period, so I was already exhausted and weak. I used my cane and stayed for less than two hours. The man who was retiring was very happy to see me there, and it was great to see everyone else too. Those guys (and even a few women now!) are a funny lot, and there always was a really good sense of camaraderie. I’d always attributed the closeness we all had to the dangerous situations we could get in. When you’re relying on someone to possibly save your life, it helps when you’re not just a one dimensional character.

I felt a sense of loss again, especially viewing the pictures of his career. As images of pristine rivers, remote locations accessible only by helicopter, snowy mornings, goofing around outside and hanging out in hotel rooms flashed on the screen I couldn’t help but be aware of what I’ve lost, likely forever. This man went a whole career being able to do that, and my body can’t even last to 35 years of age.

 

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Oddly enough though this time the loss doesn’t seem to be settling in. When people asked me what I’ve been up to, the only real answer I can give is simply “life”. Day to day drudgery of making meals, keeping the house clean, spending time with my family, walking the dog, or even simply walking in general, takes up all my time and energy. I get some sort of sickness or injury monthly that takes at least a week to heal from. I have to recover from the weekend and the extra activity of having my son and husband around. Feeling like I do now, and have for the past year and a half, I can’t really picture what life would be like for me if I had to work. How could I even have a work life balance? My definition of that balance before didn’t include meals and cleaning in the life column. It included the fun things, like friends and extra curricular activities. If I had to work, would there be any of me even left? I’ve never felt so grateful for the disability insurance I have than I do right now.

We Don’t Always Have A Choice

Aug 21, 2016

My cousin has always wanted to be a mother. She’s giving, extremely patient and has a heart of absolute gold. She’s kind, understanding and deserves everything her heart could desire. She also has Multiple Sclerosis. She has days where fatigue sets in and she can do literally nothing. Getting out of bed to go to the bathroom is difficult, and showering is simply out of the question. MS is unpredictable and she has no idea how well or mobile she’ll be at any given time in the future.

I know how desperately she wants a child of her own, and every time we talk or text about it I want to tell her it would be fine and that she could handle anything. It would be true, if I said all that, because it WOULD be fine, and she COULD handle it. But wether it’s the best thing for her to do, well that’s not so easy to say. My son is my world, my everything and I’ve never loved another the way I love him. He is worth every struggle I’ve ever gone through, and I would do it over a million times if it meant I had one more hour with him.

But I never had to decide, as a chronically ill woman, to have him. I was young and healthy, ready to have and care for a family. Since I’ve become ill I’ve let go of my dream of another child. That itself is devastating, and I feel selfish for wanting more when I already have the world. My heart bleeds for my poor cousin and her limited choices.

Life is not fair.

I yelled at my son tonight because, when I was bathing him he kept putting his arm down and his cast got wet. It was infuriating because of the number of times I had told him not to. But on the other side, when we went to the grocery store I dropped my cane twice and each time he ran to pick it up without me even asking him to. He pushed the cart for me too. Would I have even gone to grocery store if he wasn’t there to help me? Then again, if not for him I would have just eaten cereal for dinner and been done with it.

Then I think of those first 4 months of absolute hell I went through when he was born. At one point I told my husband I didn’t want him anymore. I thought I had made a terrible, colossal mistake. On the other side, holding him in my arms breastfeeding him is one of my most peaceful memories.

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He’s whining for me now in his room. He’s supposed to be sleeping but he has troubles getting to sleep. I understand. I remember lying in my top bunk as a kid, waiting for my parents to go to bed. It’s annoying but I also know that soon I will give in, climb into his bed and cuddle him until I hear his breathing slow down and his fidgeting stop. Then I will kiss his hair and think of how lucky I am and that nothing would make me give up my life with him.

Having to give up on the most rewarding and loving relationship in life is not something anyone would choose.

Passing on More Than Genes

August 16, 2016

My 4 year old son broke his arm and fractured his wrist today at daycare. He was making some kind of leap frog motion and landed on his wrist, although he’s adamant that they were playing Star Wars, and told every nurse and doctor. I was glad he spoke up for himself and took control of the situation in his own way. He was brave and stoic in a way that was far beyond his 4 years on this earth. Nurses, doctors, the x-Ray technician, patients and their families took notice of it and remarked to my husband and I how brave he was, and some were visible shocked when learning that he had a broken arm and wrist. At first I was proud and pleased with his reaction to the pain and the situation in general, but as it dragged on for over 5 hours I started to get concerned. That was exactly how I was as a child. Once at a doctors appointment the doctor closed the door, pinching my finger in the hinged side. After a few minutes my mom noticed I was tearing up and they both realised what had happened. Another time I complained of a cold and it turned out I had a collapsed lung. I remember taking great pride in not reacting whenever I got a needle, just like my son does now. Is that sort of bravery part of what causes me to push my body until I collapse? Is that what I’m teaching my young boy to do?

I stopped encouraging his bravery and tried to start nurturing him instead. I stroked his hair, told him made up stories, itched his back, told him it was okay to cry. We were seen by an orthopaedic surgeon. First thing in the morning we’re going back to the hospital to get his arm bone set, which may or may not result in his wrist fully breaking, in which case a temporary pin will be inserted. When we got home we had a pizza supper served on the couch in front of the Television. We decided to give him a dose of Tylenol, not because he was complaining about the pain, but because we wanted to ensure he slept well. As my husband passed him the medication he moved his hand to itch his back and the small plastic cup fell onto the floor, spelling the contents everywhere. My son broke out in tears, the hot streaming kind that accompanies loud wails. After it became clear to me that my husband was more concerned with cleaning up the Tylenol, I got out of bed and scooped up my boy. I held him on my lap, rocking him back and forth telling him over and over that it’s okay to cry. Repeating I love you like his whole emotional maturity depended on knowing how much I loved him. I doubt he knows it, but he wasn’t crying about the dropped medication. He was crying all the tears from all the pain and sadness he hadn’t allowed himself to feel.

He’s sleeping soundly now tucked into his bed with his arm propped up on a network of pillows and blankets. He looks so beautiful and serene. While I often consider how much I hope he grows up healthy and gets his health from his fathers side, I’ve rarely thought about the non-physical legacy we pass to our children. This part we actually have some control over, and I’m still trying desperately to figure it out for myself. I wish I could protect him from the character traits that have both nearly killed me and kept me alive.

Consolation Prize

August 14, 2016

Camping this weekend is different. My whole life is different. The Persaid meteor shower was last night and, once the clouds finally dissipated enough for us to see the sky, we tried to watch it. My husband saw one first, and i thought I was seeing many meteors slowing moving across the sky in orbs of light, until I realized that my eyes were just coming unfocused from staring upwards. All I was seeing was the stars distorted because of my blurry vision. I was instantly frustrated and upset. I stood up quickly, announcing that I was going to bed since there was no use even trying. My husband had had a couple of drinks and true to his wonderful self it made him much more understanding and compassionate. In his gentle, slightly drunk voice he coaxed me back into the chair and talked me through where to focus my eyes so that we were both looking at the same section of sky, reminding me that we could experience it together. Ever so gently, like he was trying to get a bird to eat out of his hands, he managed to calm me down and look up into the sky. Neither of us saw any meteors, the meteor shower had peaked the night before anyway, and my vision was just as blurry as before, but it was still beautiful. Truth be told I had my eyes closed for most of it anyway, since it was making me dizzy and tired, but I enjoyed being close to him and doing something special together just the same. It’s just another example of how life has changed, and how grateful I am that he is adapting along with it.

A week ago I dropped a mason jar of jam on my toe, which resulted in an emergency room visit for 8 stitches and IV solu-cortef to ward off an Addison’s crisis. I never even felt the jar hit my foot. I never felt my grip slipping. It was as if my muscles just stopped, like a switch was turned off. I had a few great weeks in early summer, and now I’m back to general weakness. I have the appointment with the new neurologist booked for 17 days from now. It feels like the climax to this saga is coming. We saw the internalist this week, who didn’t feel he could be of much help to me but noted that hypokalemic periodic paralysis sounded like a definite possibility and that I should pursue it. I’ve looked a little into what treatment is, but still don’t quite understand it. Unfortunately it seems like it all boils down to potassium and sodium channels in the body, which is the minerals that Addison’s disease messes up. It’s been the first time that I’ve really had the “why me?” Mentality. The incidence of both Addison’s disease and hypokalemic periodic paralysis is 1 in 100,000, with very few documented cases of overlapping diseases. I don’t even know how to do the math to figure out the actual odds. It just doesn’t seem fair.

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I bought myself consolation mocassins after I got the stitches. They were used so I only paid $20, which is important now since I don’t know what the future will bring in terms of financial stability. I’ve always wanted mocassins, and with the difficulty lifting my feet when I walk they are making life so much easier. Right now I’m laying in a hammock looking up at the boreal forest with the sun shining down on the lake beside me. It’s warm out but I’m cold despite all my layers of fleece. My fingers work well but my arms are stuck to the side of my body. My mocassins are on the wrong feet but it seems like too much effort to untie them to switch them. My boys are on a hike, and I’m to pick them up in 22min.

Camping is different. Life in general is different, and I seem to be slowly accepting the fact that it might always be different. For so long all I’ve wanted is a correct diagnosis, I never considered the emotions and adaptations that would come along with it. It’s almost as if I’ll have to start the grieving process all over again, but this time without all the hope and clear expectations.

I’m going to put my moccasins on the right feet to start.