My morning started with the inability to wake up… The consequence of this was a rush to get my 5 yr old to school on time. She was ready; I wasn’t. We ran out the door (by run I mean, I focused intensely on moving my legs in a fashion that would be similar to walking). We made it to the school drop-off car lane, and we weren’t the last, so I didn’t feel as much of a failure as I would have if our car was alone.
After I arrived home, I took my last Lyrica and an antihistamine. I’m still mustering the energy to take my vitamins. I also noted quietly in my mind, “I need to pick up my refills and find a way to pay for the meclizine my insurance won’t cover.”
My partner makes me a list every morning, my honey-do list. There are usually only two things on the list. I typically can only mark one off the list. I still don’t know why I can’t just complete the simple tasks he requests. Is it because I’m so entertained by self-induced failure? Or, because I get so distracted so easily? Or, is it because I’m getting lost in the internet? Or, is this an OCD-related compulsion to NOT mark off EVERYTHING? A fear that if I mark off all of the items, something horrible will happen? Or, maybe I’m just lazy.
Today the job assigned to me by him was “go to the post office and pick up his certified-letter.” I attempted this yesterday, but I went to the wrong post office. And, because I had procrastinated until so late in the day, the correct post office was already closed. What would possess me to go to a random post office to pick up a letter at a specific location??? Now I know.
Today the jobs assigned to me by me is, “find out why it’s taken beyond the 7-10 business days to get my medical records from my g.p., dishes, laundry (child's bed-wetted sheets (daily chore, almost)), find a way to make money off of recycling plastics and glass, get prescriptions, and take vitamins.”
Currently, I am not doing any of those things. I am writing and listening to a pod cast of NPR’s Fresh Air (about David Cassidy J ). I don’t know exactly what I want this blog to do for me or others. I guess, I should say, I know what I want this blog to do, but I am not sure I know how to do it. I find that I spend so much time focusing on making my fingers type correctly and re-reading what I’ve written in order to stay on track. I’m including my current symptom list. Maybe someone will read this, maybe not.
One of my more recently occurring symptoms is a knee tremor… Is it a tremor? I’m not sure what a knee tremor would feel like. While at the store last night, I was very obviously having difficulty walking. I looked silly and visually annoying. My daughter told me to stop. I told her I couldn’t. She then hugged my legs in effort to get them to be still. She’s so sweet sometimes.
My leg shaking (different than the “tremor”) has always been with me. I don’t know if it’s nerves, but that has gotten worse… more of an “every time I sit down” thing. My muscles feel so weak, I wonder how they have the strength to keep moving!!!!
As for the section I want to use for Henoch-Schonlein Purpura, I intend on documenting everything my partner and I went through in order to get this diagnosis for him. He is in his 7th month of treatment. He goes on a steroid and then a different drug to help control his symptoms because the steroids are only allowed to be used for a certain amount of time because they lower the immune system. His case is not common. Most of those diagnosed with this disorder are young boys (children), and it resolves itself within a reasonable timeframe. As an adult, this disorder can last much longer and be more intense.
We must be blessed, or, special, or, just plain unfortunate to find ourselves on two different long journeys of medical discovery within one year. Immediate answers would be nice, but that is never how it works in medicine.
To pass time while awaiting a neurologist’s consultation and an ENT appointment, I’m looking for answers myself. I think that’s what we all do when we’re dealing with health issues. I haven’t found any definitive answers for me. I was able to find HSP for my partner as a probable cause of his symptoms, but with neurology there are so many questions. And, that’s what we’re left with.
Here is my symptom list for those interested:
Symptom List (Starting from mid-July 201
ConstantDizziness/Vertigo/Litghtheadedness
Fatigue
Weak muscles (core, arms, legs, neck, fingers, etc.)
Headaches (dull-intense/sometimes sharp pains on both sides of head)
Lack of balance and coordination
Night sweats
Restless Leg Syndrome
Muscle aches, pains, burning sensations
Intermittent
Muscle spasms/twitches (toes, ribs, right flank, hands, abdomen, eye area)
Vision – blurry, words show fuzzy or mix together, room appears darker than it really is, sharp pain behind eyes
Speech – difficulty manipulating tongue, slurred, stutter
Shooting pains (hands, feet, shins, back, rib cage, head, eyes, elbow)
Deep muscle irritation/”itchiness”
“Electric shocks/Energy” (arms, legs, neck, head) (L‘Hermittes Symptom)
Tingle/Itchy (palms, soles of feet)(odd tingling sensation on scalp)
Skin – feverish pain with light touches/clothing
Deep muscle aches (upper back)
Knee pain
Walking – lean/sway/trip/run into things/knee tremor
Tremor – right hand most affected, knees
Itchy skin (between fingers, face, nose)
Numbness – left toe/palm/etc.
Difficulty focusing/staying on task/keeping thoughts/memory/front of head feels “fuzzy”
Weakness between foot and shin
Beau's Lines
NOW, I must go to the post office!
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