Yesterday I didn’t write anything and I truly felt bad about it but couldn’t really do anything. As many of you know I had a CT scan that morning to see if I had kidney or renal failure, we got a call late last night from one of our doctors but I was too scared to even pick up as he’s the one reading the results. My fiance arrived last night as I was talking to Lori Raines of the Neuronauts Facebook group a fantastic group of people with Dystonia and other neuromuscular disorders that are seeking support from fellow patients. So that and a scheduled appointment with my attorney is why I didn’t write anything later in the day but let me tell you how I spent the bulk of my day.
After the CT scan I was tired but the previous day I’d literally passed out from the pain of physical therapy causing me once again to write less because I slept all damn day and my BP was really low for me. I couldn’t think straight I was even asking where I was and if I was in a hospital, and asking my long time physical therapist who she was and where my parents were. Essentially I began freaking out because I didn’t know where I was and that’s just to explain to you how much of a fall my health status has taken since my last article. Sometimes I now lose the use of an arm or certain finger and cannot type properly or I get tremors and helplessly slap the keyboard hoping to hit the correct letters. This is all due to my vasculitis which obliterates the nervous system combines with my neuropathy which is confirmed by biopsy to be autoimmune and definitely not diabetes based even though the prednisone has made my belly so round I look like Santa. During my illness I went from starting with muscles and a near sic pack to a fat immobilized mess who can even lift a 40 lb dumbbell when I used to curl 65 for 20 reps 2-3 sets no problem. Going from bodybuilder to a mass of uselessness has made my life depressing and a living nightmare for me I never imagined being overweight but now I know what that feels like and I know what it is like to be taunted for being overweight even if it isn’t my fault. Hell I eat 1 meal a day I should weigh around 160lbs but this god forsaken medication has me gaining weight even if I don’t eat a damn thing, even if I spent all day vomiting I seem to gain weight.
Thus our search for a way to exercise and as I mentioned under the water at the pool in my Grandfathers Yacht Clubs and in his hot tub is where I found it easy to move around. Therefore my Mom brought up an older idea of our why not purchase something like the Michael Phelps Swim Spa’s and hopefully insurance would help cover the costs of this $20-40k machine to be installed in our backyard with a glass gazebo constructed over it by me, my grandfather, and my Dad. Now you might be saying to yourself “Michael you’re trying to bill your insurance for a hot tub” well no not exactly. You see this is nearly 6ft tall and 14 ft long so you can swim against a generated current at an adjustable speed and it comes with rowing bards not to mention clips for resistance training in the spa. I am fairly certain with such an elaborate setup which by the way does have 3 hot tub chairs with jets for massage when you’re done I’d be in the hospital far less. That’s how I’m going to sell this idea to the insurance company to tell them this is truly a win-win situation. I get a much needed therapeutic device installed right here at home that will allow me to do ALL my physical therapy exercises and hundreds more, and in return the insurance will see less bills for physical therapy, i’ll sign a waiver never to submit to them for aquatic therapy, and I would be in the ER for intractable vomiting and in less pain due to my new workout routine and how it affects my body. Anyways I’ve been told Empire BCBS is good with this type of thing and that sometimes they cover the whole cost or even half! I will either be getting a MIchael Phelps unit or one similar made by a company called Artesian that makes a small pool/spa called the TidalFit that also generates a current just in a different way each has their own patented design and I truly need to ask both companies where I can try their product out so I can truly feel the difference before making a $20,000 to $40,000 dollar purchase. I mean you’d want to take a car of the same price for a test drive right? I mean that’s a large sum of money to be spending on purely therapeutic purposes but my moms mind changed about the prices when I said “But Mom how much is my mobility truly worth to us?” it made an impact in my opinion. It showed to her that I didn’t see a “cool new hot tub” but a therapeutic device in order to save the movement of my arms and legs keeping me out of my wheelchair! In fact I think aquatic therapy would be FAR more effective than IVIG for my situation since we know that IVIG isn’t working yet for me and I’m nearly done with the initial round of therapy.
So do my readers have any suggestions, do any of you own a hot tub, spa, or similar device. If so how does it help the muscle knots in your shoulders and back caused by migraine and does it relieve charlie-horse like symptoms in your legs at all? I sure think the heat would help. You see the model we truly want has a hot tub at the back with its own pump/heater and then there’s the therapeutic section of the pool where you swim against the current so a trainer or family member can even be in there with me relaxing and helping me move about when necessary. What do you all think about this is a Sim Spa or TidalFit a worthy investment for those of us suffering from severe muscle knots and trouble with flexibility due to nerve degeneration and confusion of the nerve signals causing numbness and pain both which seems odd to say but you can’t really know what’s like without feeling the sensation yourself. For example I could step on a nail and barely know it yet I’ll constantly be in pain because that’s what my nerves are telling my brain to feel there they’re very confused.
I will be posting an update with which one I choose and may even work with the manufacturer to get this in the hands of more patients. I mean we use acupuncture so why not swim to repair our muscles and joints! It’s a great idea and a very healthy one at that which would help chemo patients that have gained too much weight lose all that they gained from medications. Just from looking at these units I know I could get into shape to do triathlons and marathons for those with my illnesses and that is just one of my many dreams. So please give me feedback I hope even writing this article might pusch Empire towards accepting my claim for this unit and help me towards achieving success in repairing this broken body of mine. Thank you as always for reading and I hope you too consider aquatic therapy for your own illness.