I'm probably going to write another two posts this weekend - a sort of 'week in review' update and a more general muse about the pros and cons of medical diagnosis in the information age and why statistics are meaningless (stay tuned!). For now I will give a brief (ish) review of my week.
All in all I had a pretty good week, though it was not entirely rosy. It was an IVIG week, which means we had to get up at 6am each day and schlep to the hospital. Now, I know that I used to get up earlier than this to walk Barney, but I'm out of practice and mornings are easier when they start with a walk in the woods. Anyway, it is what it is and we do what we have to do. IVIG has become very routine, really. The thing about routine though is that one can become too used to it. On Monday I found myself faced with an unexpected change - the pharmacy at the hospital sent down a different brand of IVIG for me. Not a huge deal, but it took so long to get used to my usual, I hate any little changes that come up. The new brand necessitated a re-calculation of infusion rates and a little closer observation to make sure I tolerated it. I received it all week and hope to get back to my regular one next time (apparently it was a supply issue).
Monday was fine and uneventful.I had a nice long nap in the afternoon. I also managed to clean most of the fridge before we went out for a fun supper with friends. Tuesday started out OK and the infusion itself went off without incident, however that soon changed. I felt immediately flushed and lightheaded when I stood up at physio, so we were unable to do much of a walk. I know that this can happen and there is nothing I can do about it. Not every day can be a good one. But it sucked and I couldn't help feeling frustrated. I wondered if I was dehydrated and decided to bring a Gatorade with me the next day. By the time Scott picked me up I had developed an IVIG headache (the first one in many months). When we got home I popped a couple Tylenol and fell into a deep afternoon sleep. When I woke up I felt much better. I did bring Gatorade on Wednesday and made sure to really hydrate. Seems I forgot to think this through though - Gatorade is full of sodium and I have high blood pressure... Oops. I felt much better though and had a more productive physio session. I went out for my Wednesday lunch date feeling my 'new normal' and did not get another headache - things started looking up.
On Thursday I replaced the Gatorade with water and though my pressure was still up a bit, everything was fine. I had another good physio session - this tine working on standing and weight shifting in the bars instead of a walk. A friend picked me up and we went off for lunch and to drop in on a retirement celebration at work. Yes, work. I haven't been by for a visit and really haven't seen any of my colleagues since the fall when I was in hospital. I also didn't tell anyone about my plan to attend (I was worried that I would not be up to it and didn't want to commit to anything). Of course, my friend and I arrived during the presentation so everyone was immediately aware of our presence. So much for sneaking in... It was great to see everyone and to catch up a little bit. I lasted a little over an hour before exhaustion washed over me. It was really humid out too, so the room was a little hot and muggy, which didn't help. I'm glad I went and hope that less time will elapse before I see everyone again. I pretty much crashed for the rest of the afternoon and evening.
Today was the final day of IVIG for the week and a big day in physio with a plan to review my home program. I made sure I was hydrated and rested so I could really show off the little improvements since we last reviewed things. I did not disappoint (myself or my physiotherapist). She was thrilled to see the increased mobility and flexibility in my legs, not to mention the strength gains. She added a few new exercises and suggested ways to increase the intensity of my current ones. She also jotted down strength scores for my main movements. I'm not sure what the technical term is, but each movement is ranked from 1-5 (with a +/- option for each) based on ones ability to perform actions. I have had many of these tests over the past year and was really happy to see 1s changed to 2s and 2s changed to 3s. I even managed a 4+ for my adductors! The test measures if one is able to perform the action passively, against gravity, and with resistance. I am now able to go against gravity with almost everything (though I can't always do a complete motion), which is great. I improved in every action that we tested.- thankfully we did not look at my hands and arms. We finished the session in the parallel bars where I was much steadier on my feet than even yesterday. It was a really good session and great way to end the week. Well, a good physio session and ice cream on the way home were a great way to end the week (I do love ice cream...). I'm not able to give any timeline, diagnosis or progression plan - but things continue to gradually improve and I'm pleased with that. I'm looking forward to showing off to my neurologist when I see him in 3 weeks!
So there you have it - a week in review. I'm heading into the long weekend ready to relax and recharge with no plans, appointments, or commitments - bliss.
Ciao for now.
Update - just cause I'm happy and love sharing the littlest details of my recovery, I'm adding another wee paragraph. This morning I was able to shave my legs all by myself for the first time since October! This sounds so simple and silly but it is huge and exciting. It means I have enough strength, flexibility and balance to lift up and position my legs on the edge of the tub while wielding a sharp blade. It also means that Scott is no longer my esthetician, which must make him pretty happy. It is neat to see the practical applications and results of all of the exercises I do. So yay me!
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