Topic: People who couldn't walk / my niece w/ lupus
Frequent Contributor (1K+ posts)
Member # 6789
This is an email from my niece who won't investigate lyme but still has no answers.
Does this sound like lyme?
> hey guys! well, I know everyone this email is going > out to aIot of people I haven't spoken to in a > really long time. Life has a way of getting too > busy until something slowly crawls into it that > makes life hault suddenly. Unfortunately I am > writing because that is what has happened to me and > my family. > > Most of you know all know that I have been > diagnosed with fibromyalgia and with lupus or > basically some sort of connective tissue disease > along with several other diseases that hide behind > the big ones. Please understand that in no way am I > writing for sympathy or pity but I am writing for > prayer right now. As most of you know I am no > church going girl every night....hehehe we have had > amazing times! but I do believe in God and the > ability of Prayer and spirituality. Yes when Mom > can drag me out of bed on Sunday morning I do go to > church. The past few months I have lost alot of my > coordination. It has taken many typos and a > llllooonnnngggg time to write this email. As my > journey to find a new job in my life that would > really make me happy and work with my health > continued I continued going to the doctors. Very > quickly I kept falling, speaking unconsciously and > doing many other out of my character things. My > last fall was upstairs in my apartment...with my > roomie > in the hot tub....some roomie I tell you! hehe she > knows I love her! well that fall was in the hard > cement floor and no one could hearing me screaming. > Thank God I had the energy to crawl my way to the > phone to call my parents downstairs. They came > right up to check me out and to basically carry me > to my bedroom because I was unable to do it myself > not just because of energy but my legs didn't know > what to do. The next day my parents demanded to > take me to the hospital after basically being > unconscious all day and having no clue they were > trying to call me all day to make sure I was okay. > Okay I am getting to the end because my hands can > not do much typing. After a few weeks of hospital > horrible time or as we call it vacation for the > brain and doctor after doctor I found out the lupus > has begun to go into attack mode on my brain. Right > now we don't have information but this: my brain > waves have slowed down, I drop alot of things, I > mumble and sometimes can't speak > and walk on and off right now with a cain if at > all. My family is working hard to work with me with > all my doctors. I have been told I most likely will > be giving up working for my life because my "brain" > and body can't handle it. > This hit me so hard I could not even talk about it > with my parents but simply allow myself a few > minutes of tears at dinner in front of them and > talking with my roomie about it that night. So, now > we are all left to figure out how to be this new > family who has to adjust to taking care of me > because I am losing more abilities that I have ever > thought I would. But, I am still the funny amazing > blonde chick oh did I mention single? hehe...but I > basically summed all this up for everyone for two > reasons: First, I am asking everyone for prayer > because WE strongly believe in it as a family and > everyone knows how much our family has changed!!! I > don't ask for anything from anyone just pray for me > because I know after we figure out all this with > doctors and of course disability that with prayer I > can fight this and do these horrible exercises that > I whine everynight while doing them as I try to > strengthen my brain, eyes, speech, and leg > coordination. We are all so confused > right now on how to proceed since I have never been > this bad with my health. Any suggestions or helpful > hints about SSD are definetly also welcomed > Okay, so the second thing is this: sometimes when > I talk if I am in one of the modes I will speak > either incoherent or mumbling or not making sense. > But, a simple phone call to say "hi" is really good > too. Sometimes I feel great and then I go into this > mode. We are still working with the drs and support > groups to guide us along the process. Alright my > hands need a rest now so I am going to go. Until I > get a little more stable I am staying downstairs > with mom and dad so you can reach me on my cell >0000000000000000. > Or you can just call my apartment still and annoy my > amazing roomie Please remember us in prayer and > your thoughts because life is really hard right now > esp without my total "brain" lol....... LOVE TO > YOU ALL! > > > p.s. a great website to help people understand > this disease better is