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It's early, but I went to bed around 8:00. My fit bit says I got almost 6 hours of sleep. I feel a LOT less tired than yesterday. After getting home from the hospital on Wednesday, I immediately went straight into my workout after downing 2 cups of coffee, and even managed to get 20 laps in. Although navigating the pool steps with feet that can't feel is a little tricky and apparently left my mom with her heart in her throat! LOL.
The hospital physical therapist, aside from the few exercises she showed me, wants me to wait until I've seen the MS specialist before adding on any additional exercises, although I am allowed to continue with my usual strength and weight training workouts 5 days a week. I just have to be mindful because I can't exactly "feel" when I'm over doing it. The PT was honest in letting me know she wanted the MS specialist to refer me to a physical therapist that specializes in transverse myelitis & MS PT as it isn't her specialty. She also recommended I get a referral for a PCP through the MS specialist as I actually don't have a PCP at the present moment. It's a bit "Bass Ackward" doing it this way, but if ya think about it, not such a bad way to find a PCP. I much rather go through a PCP that already has a good working relationship with an MS specialist in terms of patient referral and care, then just pick some random general practitioner that has no clue what the hell they're dealing with. And, it's become obvious to me that the medical profile we're dealing with is pretty damn vague, because the one disease I do have is considered rare.
I didn't sleep well my first night back. Between all the info swirling in my brain in tandem with huge doses of intravenous steroids, and my cat hijacking every part of this body he felt capable of, my sleep was light. Mom brought me into work yesterday. It's been so hot and we've decided until I'm done with the prednisone "taper", it might be best to have her take me back and forth to work, because the major side effect is water retention in one's feet. This has already started to happen, and when one's feet already lack any sensation, the water retention adds to that tightening or banding effect, especially on my right leg. Yesterday I weighed in at 194.0, which is actually 1.6 lbs less than the hospital. But, we're at 196.4 this a.m. because both Mom and me indulged in our fatter-day. I wasn't able to finish my quesadilla, and though I had a big plate of fries at my favorite bar, I wasn't able to finish my wine. I didn't originally account for what I wasn't able to finish, but this morning I went back in there and adjusted and really, as cheat days go, it still came out on the low end.
However, at 5.4 lb water weight gain we know the prednisone is present. And, for anyone just following this journal, I do know the distinction between water weight and "fat" gain and most know by now, I usually spend a few days after a cheat day peeing out some water weight until I hit the next low. The challenging part about this is until I'm off the prednisone, we're not likely to see our last low or a new low for a bit. As they say, "patience is the companion of wisdom" and when ya have a rare neurological immune disease, ya get to play the inflammation and water retention card any time ya want. LOL. To that end, my daily caloric average is well within my RDI so we're still on target. Actually, my clothes feel very loose and I'm kind of curious to see if I've lost inches.
Yesterday kind of felt like a blur and I was glad we were "half-mass" at work. It gave me and everyone else a little time to adjust, discuss things, and make jokes about how we want to dress up my walker. But, by the end of the day I felt exhausted. The owners of the bar and grill we frequent on our fatter-days are dear friends and I guess all the usual suspects were called immediately after word spread about this body's diagnosis. One of our regulars already has MS and it was actually comforting to hang out and talk with him a bit about it. He chooses not to take any immune suppressive for it and rocks his own walker.
The MS clinic here immediately contacted me the day I got home from the hospital and we have an appointment set up for July 20 at 8:45 a.m. After doing more research on the Transverse Myelitis/MS correlation, it's my contention they will likely approach this case as what they call a "mono-phasic ideopathic acute partial myelinic episode". This is just a bunch of garbaldie goop for treating this as a "one time thing". They have no choice. After enough reading yesterday, it's become apparent that diagnosing MS is more difficult than diagnosing the TM and TM is less common!!
There is no such thing as a clear cut case of MS so it's extremely difficult to look at someone right off the bat, even with lesions present, and say MS is happening or will happen. Based on what I've read, the TM I have is likely presenting MS in the background because my symptoms are "asymmetric" and there are small lesions in the brain. In this case, don't think of TM as the conductor of the MS orchestra. It's more like a guest host announcing the evening line up to its audience.
What we can say for sure is that physical therapy will be essential in the coming months in order to regain sensation or even partial sensation in my lower extremities again. And, that is probably the hardest part when trying to explain to folks what is going on. Many of us (including myself) tend to lot paralysis in with no sensation. When I state to you I can't feel my legs, you think of someone in a wheelchair that can't MOVE their legs. It's okay, I did too! But, sensory perception is distinct from motor skill. My brain can tell my legs to move in an instant and they will, but they can't FEEL what they're moving. I don't know how much I'm tightening or not tightening a muscle. Pain is muted. When someone shoots Novocain in your mouth and flicks your cheek, you might feel the pressure, but you won't feel the sensation or the sting. So, what does that even mean?
Take your shoes off and walk on the ground. Tell me what your feet feel? They feel rocks, and pebbles. They might feel grass. They might feel heat or cold. And, all of these sensations will either make you step harder or lighter, or step around things. But, if you can't feel any of that, how do you know HOW to step? My brain is compensating because even if I can't feel it, the brain has already created it's own picture of what to avoid but it means my brain is working overtime to do it because it doesn't have that immediate sensory perception to rely on and give it immediate feedback. In short, I have to tell my feet, "don't walk on that, it's to hot or you'll get burnt" instead of relying on the sensation of heat to provide an immediate response.
And, so there ya go...lol
Anyhow, I just want to thank everyone again for the love and support. AND, thank you POOF for the beautiful pictures of the birds. My love of Avians will be playing a big part of inspiring me to recover. It's so ironic how how this last year in monitoring the eagle cams and raptors, how many articles, posts, and documentaries I came across on raptor rehab. The healing capacity of a bird is phenomenal. And, in fact what their own brains will do to compensate for injury or the lack of an ability is mind blowing. But, what I most cherish (especially with my eagles) is there dogged determination to get strong fly again. You'll never see a girl weep harder than me when she watches and eagle being released after recovering from injury.
I imagine no flight feels sweeter...
Have a beautiful day, everyone.
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1151 kcal
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Grasa: 33,29g | Prot: 78,36g | Carbh: 106,34g.
Desayuno: Coffee with Cream and Sugar, Quesadilla with Poultry and Cheese. Almuerzo: Blueberries, Optimum Nutrition Gold Standard 100% Whey - Double Rich Chocolate, Almond Milk. Cena: Wegmans Corn on the Cob, Endive, Chicory, Escarole or Romaine Lettuce, Cucumber (Peeled), Skinless Chicken Breast, Garbanzo Beans, Giant Eagle Cherry Tomatoes, Mezzetta Super Colossal Spanish Queen Pimiento Stuffed Green Olives, Ken's Steak House Lite Asian Sesame Dressing. Pasa Bocas / Otros: Grapes, Blueberries, Cantaloupe Melons, Red Table Wine. más...
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