You know I'm having a good day if I blog. That means I am having some control over my various limbs.
When people ask me how I'm doing I usually say I'm doing good. I answer this way because despite my physical limitations and struggles, mentally I'm in a good spot. Right now, if you were to ask me how I am doing, I'd probably tell you I'm upset and frustrated. This isn't because my symptoms are worsening, it is because of my frustration over how the medical community is responding to my worsening symptoms.
I think the answer "I don't know" is a respectful and honest answer. Not knowing the answer to a problem is fine, that means we just need to keep looking. I have a very difficult time when someone assumes that because they didn't find the answer they were looking for that must then mean there is no answer to find. That is a very self-absorbed response to the dilemma of there being no immediate answer. When I went to the neurologist I have been seeing, instead of telling me she didn't know, she said "there is nothing wrong". For the first time in this whole mess I cried. I cried because her response told me she was all done looking. I cried because her prideful remark was presumptuous and arrogant. I cried because I was disappointed that the doctor I trusted was done trying to help me. She didn't even offer to make a referral.
She told me I was sitting around to much and that my symptoms were getting worse due to this. She advised that I start pushing my limits a little to start building my endurance and strength. I told my physical therapist this. She had been after me to not over do it. To learn to recognize my body's signs that it was time to stop. The concern that fatigue made my symptoms worse guided treatment.
We decided to push it.
Pushing it was really not doing much more, but a little more was all it took to bring on new symptoms.
So now, along with loosing the ability to use my legs (a normal consequence of overdoing it), I developed severe muscle spasms. My legs and arms flared uncontrollably. I was unable to use my right hand at all. Talking made the muscle spasms so bad it looked like I was having a seizure. I even got to the point I couldn't talk or feel my tongue.
That's what I got for "pushing it". I went from the morning where I could walk almost normally, without assistance, to a few hours later being bed ridden, and then a few hours after that needing an ambulance because although I was cognizant of my body and surroundings, I was unable to communicate that I was aware and alert, and my body was spasming uncontrollably.
Fast forward to the ER. The second time in this process I have cried. I didn't cry because of what was happening to my body. I cried because of the response I got from the practitioner on duty. She looked at my husband over my shaking body and said, "all the testing done doesn't show anything wrong, the doctor you saw this morning was aware of your condition and didn't want anything changed, so what is your concern?"
I do have to say that the family doctor I'm seeing has been supportive and encouraging to me in my desire to look at every possible solution. She did know I had worsened due to my physical therapy session, but she hadn't seen the severity the muscles spasms had reached.
I was sent home with more muscle relaxers.
And here I sit.
Am I upset I'm ill? Of course I am. Am I depressed over it? No, I'm not. I'm to proactive to have time to allow myself to be depressed. Am I hurt over the attitudes I am facing with the professionals I am seeing? Very!
Today I am doing ok. I am walking a bit better. My muscle spasms aren't to bad unless I get talking. Rest will hopefully get me back to where I was a few days ago when I was able to leave the house a few hours at a time and walk with a cane.
I am grateful for all the help and offers for help that my friends and family have offered. I know many of you have told me to call....I have to be honest, I hate talking on the phone. I may call if I need something but just chatting is to much, I can barely hold the phone for very long!
Pray Scott keeps getting chimney calls. We need to get the jeep fixed before we travel to any out of state doctors. I have been moved to the top of the cancellation list for the lyme specialist I'm waiting to see.
I will sit here now and read a book or watch a movie while I wait for my wonderful husband to get home!
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