SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
How do you do it alone? When your family and friends abandon you.
About This Group:

This is a group for anyone who is currently living in limbo land with a neurological disorder but doesn't have a diagnosis. Many people are living with chronic and disabling neurological problems which mirror such diseases as multiple sclerosis, lupus, M.E., Fibromyalgia, Lymes disease, Vitimin D deficiency, Migraines, Parkinsons yet have no diagnosis and are left to literally struggle on alone. I have set up this group to help support people through their journey, whether its just for a moan, sharing a joke, experiences, advise on how to survive just plain anything. I know there are a lot of us out there. Anyone who feels lost, or needs to share or just wants a big hug please join, there will always be someone to give you support. OUR MOTTO IS: "we are still all in this together..no matter what point of our journey we are in...limbo, dx. or just joining...we are all here for a reason...to seek support, make a friend and find answers..."

Founded by MrsAristotle on October 2, 2009
521 members
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How do you do it alone? When your family and friends abandon you.

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!
4 Comments
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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! :)
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Hello,

Please stay..and I have to say ditto to bbxx..Don't give up..It is so hard to make others understand....It is all about you!!You are who is important..and now you have us!

We are all here for you..

Jibs
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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
Nicola
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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,
--faithHGL
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