I am a RN who after 6 years finally have crossed over from undiagnosed land to being diagnosed with Lupus and a blood disorder called heterozygous mutation of the MTHFR gene. Now I am happy to know I have a name to the illness cause I thought I was just going to die and crazy being the cause of death. However in a bitter sweet twist me a person who always went above my duties for my patients and their families and loved my job even without any praise I knew I made a diffrerence this included my family whom came to me for whatever they needed from the small things to a kidney, which I didn't have to give but was ready to cause that is what you do for loved ones. I now find myself alone without a person to be my support, in fact they are convinced I am on drugs and alcohol caused all the problems I have and I choose to be ill cause there is nothing wrong with me, even after a 6 days stay in the ICU almost dying from PE'S AND DVT's so numerous the cardiac surgeon rerfused to place a filter because it would have clotted off before he could close creating a bigger problem. I had a HGB of 6 and no iron at all plus the Lupus had damaged my liver and kidneys and was working on my brain as if all the clots that I happened to dissolve with aspirin overdosing for the headaches. Even my 15 year old daughters moved out having jumped on the team of Brandi haters. I am just tired I mean all the appointments and medicines and pain at times I am ready to stop it all and let nature take its course. I have to work for minimum wage as an aide just to be able to have a pay to do what I can I need to save money to complete my CEU's to be able to re-activate my license to be a nurse again which is all I want to do before I die as it still makes me smile thinking about it. But truthfully as my vehicle needs more and more repairs daily which are out of the question so I pray everyday it keeps moving, I don't know how to handle all this alone and I really don't have any more fight in me to stay in this battle, I feel like the last soldier alive in a war that in the end wins anyway. It just takes longer I just don't love life anymore. HELP!
I am new here but I read your post and had to say DONT GIVE UP! Your life is so valuable. You are important. You matter! The majority of people are selfish, and have the attitude "scratch my back and I will scratch yours" so to speak. Sometimes everything is really hard and really stinks I know. You have friends here and you will make it through this rotten time, and the next one and the next one. HANG ON! :)
I sit here reading your post with tears in my eyes.
You have gone from a person who has always helped everyone, to being the one who needs the help herself now.
I like yourself has a blood-clotting disorder, and myself being medically being mis-diagnosed with MS for 12 years, to go on to find out i have Lupus, and APS.
I only hope that the people around you realise that you are sick and need some help and support.
You have to stay strong because life is precious, and you have to fight to stay well.
I have found in my last 12 years off life, that i lost a lot of friends, because i was always the giver, and when i became sick, i just couldnt give anymore.
But i realised that the people who didnt stick around because i couldnt give, where not worth having in the first place.
Dont give up, this is a very supportive forum, with some very courageous, and caring people, we are like a little family.
So welcome to our family.
I hope you keep in touch.
Big hugs and cuddles
I, too, have tears in my eyes as I read your post, and the responses of people I've come to know and love on this forum. I'm so glad you found us. Even in your weakened, challenged state, you have so much to share. I can just see the profound impact you'll have as a nurse with this experience behind you. You'll never make the mistake of blaming an autoimmune disorder on lifestyle choices. You'll be able to care deeply and compassionately for all of imperfect people.
I'm so sorry that you are struggling today. You'll be in my thoughts and prayers.
All the best to you,
I, too read your post in tears. It is like reading my life of the last 6 + years. My autoimmune disorder is; hmmm, not sure the exact name. It is where my adrenal function almost shuts down with the rest of my body following. I can't move even my arms in an extreme episode. According to doctors I shouldnt be alive. My husband left me this way for a year & a half, refusing to get me medical help. He also apparently tried to help me die by drugging my food in the rare times he helped me to eat. I literally lived on pecans & marshmallows for days at a time. By the time I got diagnosed I was malnourished & had mono on top of my adrenal problem. I had had several back surgeries & have been on regular pains meds since 2008. I still only take 1/2 of my pills, the prescribed amount is normal but all my life a "therapeutic level" of any med is too strong. My kids are the same way. My husband, my kids' step father convinced my kids that I was faking & being lazy. My kids were great kids. But they began to come over during my episodes and take my money, my meds, and anything else they wanted. After my diagnosis, (August 2012) I filed for divorce. He began sabotaging every effort I made to heal. He took all our money & refused me my medications. One by one he went to each of my family members with various things, most of which Ive never been allowed to know but they all think Im some kind of king pin drug addict, that I buy, and sell drugs off the street. He refused to go with me to appointments, look at my leftover pain meds each month, (I always have 35+ left over) & I keep losing my family members one at a time, including my church family. My divorce was final 10 days ago, Praise God! I have 35 days to get moved out of my house and not a soul to help me. I was $1600 a month alimony & now have disability. Its not much but gets me out to peace and safety. But I am so lonely. Im in constant shock and my heart is broken in pieces. My sleep patterns are very inconsistent & I cant seem to beat this depression. Surely there has to be someone that will love me just a little. Ive spent my whole life, even as a child taking care of my family & others. Im so tired, so empty, & though I KNOW otherwise I feel like even God has abandoned me. Please tell me it can be better as time goes by. I went from very strong & very happy to so weak and now bitter.
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