Re: Definate Diagnosis

[Guest guest]

Joan,First off, now that you know that you do have NS and systemic sarcoidosis-- (I've known it was multi-systemic due to the lungs, vasculitc skin lesions, GI system, and arthralgia -- that's all I can remember right now -- anyway, I and my doc's never thought I would be the one or two or few in the 100,000 who would turn neuro) you are able to focus on doing what you can to get the treatment you need to stop or slow the progression of your sarcoidosis. IT DOES NOT MEAN A "DEATH SENTENCE." (physically, maybe not, but sometimes with the pain and emotional aspects ... well ..... Jesus -- our "higher power", forgive me ... I acknowledge you and others have endured much more -- I'm weaker than thou, though). It means that you and your MD's will have to be on top of the most recent research, and medications. (I believe they are already, and of those who are not, such as my GP, are probably researching as we speak).The TNF inhibitors, Enbrel, Humira, Remicade are showing significant improvement in symptoms. Methotrexate, Plaquenil, and yes, prednisone can also help with slowing this disease. Personally, I can't do any more prednisone. (Sometimes I think if I had taken Pred earlier on, I would not be where I am now, but I guess that is not true since most of you took and still reached this level.) (Diabetes, depression get too nasty when I'm on it.) (any more depression would make me give in "completely" -- you know what I mean here -- I already have a well-thought-out plan and preparations are in place just in case ... no, I'm not ready ... it just helps me to feel better knowing all is done and the option is there -- although all can relax in knowing that I truly believe I would not do that to my Joe and my parents and my cat since no one would care for him the way I do.)I know how hard it is to hear that you won't be working anymore. When we face that, truly face it--it scares the shit out of us. And yes, it's saddening. This is where we all go through the "Five Stages of Grief." (Since I've been very sick and in pain many times with the other systemic parts -- prior to knowing it would even go neuro, I have gone through and am familiar with many of the stages --- which I've always referred to at the "normal 2-year grieving period" -- I must admit, though, I'll probably have to go through all the stages I've been through thus far all over again ... due to my knowledge of the disease and my doctors' reactions to it.The first stage is Denial (was there prior to Friday). No, they'll find a cure. (don't think I've ever been there given lack of research funding, and the fact that we are all too sick to fight for it.) Well, maybe I can do some part-time work. Well, maybe I can work from Home. You get the picture. (I certainly do -- asked doc on Friday if he would still okay this ... and just e-mailed boss if this would be possible.)The second is Bargaining. Maybe if I take these vitamins, or minerals. Maybe I should see a holistic MD. Maybe if I exercise, take the minerals, change my diet, see a holistic MD, get a therapist. .. (yep...have done some and in middle of some currently.)The third stage is Anger. (Yep ... I am a "thrower" ... in fact, yesterday, I threw a roll of paper towels across the room --- this is mild compared to some of the other things I've thrown ... Joe later told me, at the appropriate moment of course, that as long as I don't throw his cologne collection, he will hug me ... since it was several hours of sobbing, etc., I was able to laugh ... I told him that if he had said this to me during my "throwing episode", I would have thrown the entire collection out the window!" This part has been sneaking in for a long while. Dammit, why can't they find a cure. Why me, how come I'm the one in 100,000 that gets NS. What about my future, my role in the family, in our retirement, my marriage. (yes, to all the aforementioned.)The fourth is Depression. Nothing will ever be the same. I don't know who I am anymore. This is where we really meet face to face our life script as "we" wrote it. It is where we have to reach out to others and embrace our lose. (this is where I am now.)

The fifth is Acceptance. After we've acknowledged that we've changed, that what we thought would be our life path has taken another direction, we finally come to accept that "chronic illness is a part of our life." (I had accepted the prior disease affects, but am not accepting of the neuro part...not in any f--king way -- sorry!...) We learn to pace ourself so that we can go to dinner, or to a show-- or rent a movie and stay home (we have no choice but to pace ourselves ... I call it "not move at all" -- our bodies hurt ... how are we supposed t go to a dinner on "all fours" and "twisting ourselves like a pretzel while trying to take the pressure off our spines, etc.????). It's a place where we can accept our illness (I do not know if I will ever reach acceptance of this illness and that I, or you, or , or Steve, or , or Debbie, or Duffy, or anyone on the face of this earth has it -- or any other disease for that matter -- my parents are aging--they need me to care for them, not the other way around; Joe fell in love with a lively, vivacious, fun, ready-for anything, and all-around can-do person ... not a need, dependent, can-barely-do, no-income-to-help, etc., person), and ourself in all our vulnerability -- (vulnerability has been my "life script" ... and I resent it ... I do nothing but help people and am trusting and kind ... (I've had enough of this being vulnerable through no fault of my own and having to deal with and accept it ... I don't!!!...and don't think I ever will -- how many "vulnerabilities" must one endure before in his/her lifetime?!?!?). (It's actually really awesome!) (okay ... I'm not sure I will ever be able to use that word, but, I'm very happy you have reached that point...I'm sorry to all, I'm whining ... but I've had enough of physical/mental pain ... and this is just the beginning of having learned the physical part, which I've endured for a few years now, will be permanent and possibly forever. If anyone is wondering why I've been a member for several months now ... well, I researched, knew I had multi-system sarc, and "suspected" ... but now that I and my doc's know for sure, it puts a different light on things)Joan, you have an MD that has such a kind heart. He sounds like such a wonderful man. (These 2 statements are "under"statements -- yes, my PCP is a wonderful doctor and human being! -- that is the only thing through this ugly monster for which I am grateful.) I know that my MD, who I stayed with until I was 35-- and only changed because I was working for an Internal Med. MD, and could get my care free-- still embraces me with a wonderful hug every time we see each other. Just thinking about him brings me comfort. . . (I can certainly understand that, Tracie.)You know lady, he's going to be working for you. (yes, he is ... and he has been since I've been seeing him since 14 with mono.) Give him Dr. Baughman's name and Dr. Sharma. Have him get ahold of them, or at least read the articles they've written on sarcoidosis. (will do...he is a very good doctor and has suspected neuro for about 3 months now ... would not be surprised if he has not already read their articles). (These are the #1 and #2 MD's in the US on sarcoidosis.) Both are brilliant MD's specializing in sarcoidosis. As far as your disability--with your MD's letters, and the coordination of your specialists-- I don't think you'll need attorney's. I think that they will be able to push your SSDI and LTD through. Talk to them about wording their letters with "this disease is like MS." etc. That way all they can cross reference your NS to their already built reference files-- and get you approved quickly. (Okay, but I resent that ... NS is a disease all it is own ... why should we have to do that?!?!? ... it's time the medical and insurance companies understand it -- if someone doesn't understand it, they should educate themselves on it -- I (we) shouldn't have to --- we need to focus on more important things like resting, remaining stress-free, and getting better, if possible, that is!!!!...sorry, Tracie, I'm venting out loud and not at you.)Get the letters from friends and co-workers that state how things have changed with you. ... my co-workers resent me because they have picked up up my very heavy workload and do not know how to do my job, blame me for not showing them which was not allowed initially because it is all personnel work and because they do not have the relationship I have with our large group of employees, and because my boss misses me -- actually now that I think about it, they would probably be very willing to discuss all of my mistakes and errors, etc., in light of the above! ; my friends ... well, all they can say is, "I don't know anything about her disease because she won't talk about it -- also, I "pretend" I'm find in front of them ... the only time I will see or talk with my friends is when I can dose myself with pain meds without having them know I've done so". Take someone with you to any interviews. If you get confused, ask your worker to re-explain, or your friend to explain. (People that know you well, have already learned how to re-explain themselves, so that you get what's being said -- (I do not let anyone know that I do not understand -- I just physically or verbally "agree" without comment -- and again, I do not talk with people often enough for anyone to see the changes in me.) Don't let anyone "boondoggle" you. If you get frustrated, that's okay. If you feel like crying - that's ok. But stay your path-- you are sick. You need treatment, and the treatment is all "hit or miss." We don't know yet what causes this disease, and we don't have a cure. Just know that what is happening is that your MD's will have to "try" this to see if it helps. If not, then we "try" something else.It sounds horrendous-- and it's scary. (yep) But you'll find you have an inner strength you never knew about. (I'm mentioning this again as I did in the beginning of my comments in here ... but if you knew my personal history, which most do not, you would already be amazed at inner strength -- strength brought on by evil that no human should have to endure ... I am human, my strength has a weakening/breaking point) This part my friend, is wonderful. (Been there, done that ... I don't feel like being wonderful again -- I'm sorry, Tracie ... you are, today, the one to receive my anger ... I know you know it is not directed at you, just to you.)With great compassion,Tracie

[Guest guest]

Joan,

F--king, nope, seriously fucking throw it at me, I can take it. As far as your anger, I do understand the need to "throw" things-- for me, it was one league short of womens professional fastpitch softball. I could send a ball from behind the plate (I was a catcher) all the way to the fence in center field. I regressed to rotten food off the back deck, which later fed the deer, mountain lions and skunks and racoons that run the "green-line". So, it served multi-purpose.

Maybe that's what I'm saying here, at least to myself. This illness has served multi-purposes. It has taught me to get my anger outside of me. It has taught me to allow myself NOT to have to be so "STRONG & SILENT" around my friends, (the real one or two are still with me), and it continues to allow me to help others that are on this path.

I agree, the life pain most of us can speak of, and choose not too, should have been enough for our life-time. Guess our "Maker" doesn't see it that way.

You are allowed to have a "breaking point." You are allowed to say fuck. You are allowed to throw things and you are allowed to cry for hours. Then when you are ready, you'll pull up your bootstraps and realize you can still get thru the grocery store. Or take a shower, and get dressed. Or snuggle into hubby's arms. Or send hate emails to Tracie. It's all okay. and it's all wrong. I truly wish you weren't having to do any of this. I truly wish I wasn't having to do any of this.

Taking It One Day At A Time,

tiodaat

[Guest guest]

Joan,

F--king, nope, seriously fucking throw it at me, I can take it. As far as your anger, I do understand the need to "throw" things-- for me, it was one league short of womens professional fastpitch softball. I could send a ball from behind the plate (I was a catcher) all the way to the fence in center field. I regressed to rotten food off the back deck, which later fed the deer, mountain lions and skunks and racoons that run the "green-line". So, it served multi-purpose.

Maybe that's what I'm saying here, at least to myself. This illness has served multi-purposes. It has taught me to get my anger outside of me. It has taught me to allow myself NOT to have to be so "STRONG & SILENT" around my friends, (the real one or two are still with me), and it continues to allow me to help others that are on this path.

I agree, the life pain most of us can speak of, and choose not too, should have been enough for our life-time. Guess our "Maker" doesn't see it that way.

You are allowed to have a "breaking point." You are allowed to say fuck. You are allowed to throw things and you are allowed to cry for hours. Then when you are ready, you'll pull up your bootstraps and realize you can still get thru the grocery store. Or take a shower, and get dressed. Or snuggle into hubby's arms. Or send hate emails to Tracie. It's all okay. and it's all wrong. I truly wish you weren't having to do any of this. I truly wish I wasn't having to do any of this.

Taking It One Day At A Time,

tiodaat