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.
October 22, 2016
I know I use this word far too often, but this renovation is exhausting. There is not one room in my house that is clean or clutter free right now. I have no where to put anything and when I need to find something in the garage I have to reach or stand over a pile of construction materials or a bag of random junk. I can’t even fill my bird feeder because there is too much in the way of the heavy bag, and I don’t have the strength to empty it into the rubbermaid container we usually use. Waking up before the men get here at 8 is hard, and makes me wonder how I ever got to work for 7:30 every morning. My eyes have been so bad lately, and I’ve taken to using my dog as a pseudo service dog on my way back from walking my son to school. I take prolonged blinks, resting my eyelids for about 3 steps before opening them up again to get my bearings. I don’t know what I would do without my black Labrador retriever. He is such a support to me lately. I’ve taken to calling him my shadow. He never leaves my side and pays particular attention to me on my bad days. I miss the cat so much and can’t wait to be able to have him back to feel his soft fur against my skin and listen to his purring.
It’s my husbands and my 11th anniversary today.
October 24, 2016
I didn’t get to finish that last post. The excitement of going out for dinner the night before our anniversary caught up to me. It was a really nice time, we went out of the city to this trendy authentic Mexican place with out closest couple friends. The food was incredible and the atmosphere was really fun. I missed being able to have an alcoholic drink, but made the right decision and ordered a virgin watermelon cocktail, which was served in an actual watermelon, albeit about a quarter of the size of a regular watermelon. I enjoyed being in great company and eating flavourful food so much. It’s been such a long time since I had a night like that. I even felt well the whole time, remarking to my husband that I pretty much had a “normal person” day. It caught up to me the next day though. I still don’t expect it to happen and wonder if I’ll ever get used to the brick wall that seems to suddenly be put up around me.
My legs are really hurting lately. It’s likely from the aquasize class I’m taking but I’m not prepared to stop it. Keeping my glasses on in the pool had helped my vision in the days following the class. I’ve been very nauseous lately, and have near constant pain in my left kidney area. I wonder if extra steroids would eliminate the pain, but I’m not sure if it’s right for me to take extra when there’s no discernible reason for my cortisol needs to be higher. I really need a follow up with my endocrinologist.
I’ve been avoiding any and all phone calls to doctors to pursue a diagnosis. I know my first step is to call the last neurologist and figure out what he had said, and then to call my endocrinologist again and try to get an appointment. I’m procrastinating out of fear though, fear that it’s all a waste of time, fear that nothing will ever change. I’ve never really been a procrastinator, and this fear bugs me and makes me feel mentally weak.
October 13, 2016
I want to write. I need to write right now, but I don’t know what to write about. I’ve had a horrible afternoon. The chest pressure and pain has been very intense, and I took an Aleve around dinner time. I’ve never asked any doctors for pain medication. The last thing I need is for them to start thinking of me as a drug seeker. But to be honest it never really occurred to me to treat the pain instead of finding the root cause of it. I’ve only really considered it within the last week. I have many concerns of course, with the biggest being discounted by doctors as a drug seeker, but I also fear addiction, side effects, and complacency in finding the cause of the pain. I don’t often take Tylenol or Aleve, maybe once a week, but I know long term use is not good for your liver. I’d like to discuss it with my family doctor, but I know he’d just ask me what I want to do, assuming I’ve already researched and made my decision. I’d be open to the idea of medical marijuana as long as I could get an oil or something. It’s my understanding that you don’t get high from the oil. As a devout stoner in my college years, I’ve had enough of that and really don’t want to be that type of parent or even adult for that matter.
It’s a rough day. One of those days that I cried, and I really don’t do that very often anymore. It’s exhausting to cry and doesn’t actually help anything. I lay on my bed listening to my son play with the new toys he got for his birthday last weekend and let the hot tears run down my face. My husband came in the room and looked at me sympathetically, but didn’t say much. What can he say at this point? What can anyone say?
The leaves are falling and the air is getting crisp. Another season is over and I’m not improving. I’ve picked all the tomatoes from the garden and canned pasta sauce. The carrots, beets and parsnips are waiting patiently in the ground for a day that I have enough energy to process them. The last week was spent recovering from the previous week, which was spend preparing for my sons 5th birthday party.
He always seems to pick themes that are impossible to easily buy decorations or loot bag toys, and this years snake theme was no exception. I gave it my all though and he and I had a photo shoot with him in his snake costume for the invitations, he painted loot bags, and we got creative and crafty with the loot bag toys. It took me 3 hours, and I had to kneel on a chair for most of it, but I made him a snake cake that all the kids thought was cool. Because of the renovations we had the party at a museum that just happens to be having a snake exhibit on this year.
At my councelling session this week, while I was describing/complaining about the things that exhausted me lately she brought up an article along the lines of “why we don’t need to make our kids childhood magical.” I had read it before and really did think it had a lot of good points. But where i thought it didn’t really apply to my situation was it seemed like the things the author was talking about were things mothers did on their own to enhance their children’s lives, whereas my son and I do these things together. Yes it’s exhausting, but we have so much fun together, and he appreciates everything we do, even thanking me before he goes to bed some nights for the craft we did together or for baking muffins. And as far as his birthday goes, I think it’s important that he knows that work happens behind the scenes of any event, and everyone involved should help out. Time spent with him is always worth the exhaustion that comes after.
The cake is always my surprise for him though. I stayed up far too late making chocolate frosting, sorting m and m’s by colour and swearing when my hands were shaking too much for me to place them carefully to make scales. It was a huge hit with all the kids, and it was worth the effort and consequences. I guess in the end I do want his childhood to be a bit magical, and on this rough day I’m thankful that I was able to pull it off.
October 10, 2016
I’m sitting in the glider rocking chair and it hurts. I like the movement, as it feels comforting and somehow warm, but holding my upper body up and pushing ever so slightly with my legs is very tiring right now. It’s Thanksgiving weekend and my boys have been home for 4 straight days. I love having them both around and the activity that accompanies them, but I also can’t wait for the weekend to be over and my chance to rest.
The renovations are very tiring on me. The noise, the extra cleaning and disorganisation that comes with it adds to my exhaustion. My quest for minimalism was to make my life easier, with places for everything and everything in its place. Cleaning uncluttered surfaces and having few things to pick up before turning on the robot vacuum, affectionately named Robo-bug, had made my life much easier than even I had hoped and I miss that and the extra energy that came with it. My life has been reduced to using energy like currency, without ever knowing how much I’ll have at any given time. I’ve learnt to be frugal for things that matter less (cleaning, cooking) to have more for the things that truly matter (family and friends).
Last night we went to our wonderful friends house for a family holiday gathering. We really do have some incredible people in our lives and I am very grateful for their support. After an evening of hearty food and engaging conversation we left with lovingly packed leftovers and sore facial muscles from laughing and smiling.
My friends mother was asking what is next for me and I wasn’t sure how to answer. I guess this week I have a few phone calls to make, starting with the neurologist who I had hoped would investigate hypokalemic periodic paralysis. I’m not sure what the next step was with him. I was so upset when we left I’m not really sure what the game plan was. I was thinking maybe I should ask my family doctor for a referral to a rheumatologist, since they seem to be the unofficial auto-immune specialists. I’m not really sure what else I can do though. I still have such a hard time being okay with spending so much money to go to Mayo clinic.
I had another check in from disability insurance. As seems to be the theme, she called when I was in bed resting. It was an uneventful call as most of my answers hadn’t changed. She said that, on her end, she had brought my case up with the doctors within the insurance company, and they weren’t interested in speaking with me as they doubted they could do anything. She didn’t even need me to send copies of my latest doctors notes, which I actually found disheartening in the sense that it made me feel somehow even more disabled.
The garden is pulled and all the vegetables are washed and waiting to be processed but I’m so tired. It’s time for my 3rd nap of the day. I wish I could go back to the time in my life when tired was an anomaly instead of the norm.