Yes folks, tomorrow is my first official day of home physical therapy. It is time to make those first moves towards getting out of this bed. I am so sick of this disease and all it has done to my body. It has taken all of what was a nicely toned ballroom dancer’s body and turned it into a shriveled up lump of old lady skin. Maybe I am exaggerating a little bit but that’s what I feel like sometimes. When your weight goes from 127 pounds of solid muscle to 97 pounds of skin and bones back up to 134 pounds of NOT muscle, let’s just say it’s not pretty.
This body has been put through torture over the past four years. I have ingested thousands upon thousands of pills, shoved IV fluids of caustic substances into my veins to kill the bacteria attacking me, eaten or drank the most awful tasting substances you have never even witnessed on those “gross-out” shows on the Food Network, been shot with unknown substances claimed to be “beneficial,” rubbed strange smelling oils all over myself, soaked parts of my body for hours in crystals and powders and food substances that were supposed to help detoxify my system….Oh my Lord the list goes on and on! Literally, I really don’t think that there is much more that I could try to make this disease go away.
So now, I am just going to try to make the best of it and live my life with what I have left physically. Right now, that is not too much, let me tell ya. I haven’t been out of bed since the second week of January due to a worsening of my POTS (that’s the head spinny, legs go numb, bp falls when you stand up thing that I have told you about before like a million times…keep up with the blog people….geesh). So, with all of this time I have been spending in bed my legs have gotten pretty weak and my endurance is really poor. I tire easily and get short of breath with little exertion. I have a heart condition, from the Lyme too, so that acts up with exercise which just adds to the shortness of breath and makes me overheat which also makes me want to pass out. It’s like a revolving door, ya get it? Yah, this physical therapist is gonna LOVE working with me.
I met her last Monday for our initial evaluation and she was only supposed to be my intake evaluator because she is like a supervisor who then assigns the patients to the best physical therapist that will suit each case. After Tanya and I had a chance to discuss my history of how I ended up like this, what my current symptoms were, my complaints, my goals and she heard the treatments I had already undergone (this was about an hour long conversation) the next words out of her mouth were, “Oh girl, I’m keeping you. Nobody else can handle your case.” That kinda made me smile a little, on the inside of course. I’m glad she is keeping me. She specialized in cochlear vestibular physical therapy which deals with balance problems which is one of my biggest problems! Since the dang Lyme hit me I can’t walk past a door jamb without becoming personally acquainted!
The way I see it, if you’re gonna be messed up, then be totally freakin messed up right? I have finally found a group of people at this rehab center that are willing to provide me with the help that I need to get better IN MY HOME and my insurance will be paying 100% of the cost. I could not be happier. The fatigue of having to go to them for all of these services would most certainly make me so much sicker, I would end up hospitalized. They are going to get me a medical social worker to help us get more services for the disabled, which we are not taking advantage of and will help us financially.
They are also going to look for a counselor who will do home visits that specializes in talking with people who have chronic illness and how to cope with it. I had tried to find one myself when I was so sick on home IV antibiotic therapy but I couldn’t find anyone! I was most disgusted to learn at that time in my research that I also could NOT find a single place that provided respite services for a senior adult taking care of a disabled ADULT child. My poor mother was beyond exhausted taking care of me alone and there were no professional companies, covered by health insurance, to provide her even an afternoon off. It was a disgrace. It appears that I won’t have to worry about all of these issues AND be the “sick person” at the same time now since I am under the wing of this new home health company. I can have a home care nurse if I want one, a home health aide if I feel I need help bathing or dressing or cleaning etc. This has been sent from heaven and I couldn’t be more grateful.
Where was this two years ago when I was hooked up to my IV pole at home having seizures in the arms of my mother as she tried to soothe my pain while we rode them out together because we had no one to help us? This has been an incredible blessing to finally have crossed our path so I intend to work my butt off at PT tomorrow with Drill Sergeant Tanya. The time has come to liberate myself from this prison of a bedroom. After five years of stealing everything away from me and taking over my life, MY war needs to end. Chronic Lyme Disease is a battle but if you keep fighting in whatever little way you can, you will always have more power over the disease than it has on you.
I know it’s hard to believe when it has knocked you down for the 5th or 6th time but keep going my friends. That’s what I’m doing. Just keep going. Something or someone always turns up to make it all work out in the end. Happens every time! Just trust me ok? I’ll keep ya posted on my Boot Camp training. Talk at ya soon~~