AnonymousSeptember 26, 2007 at 11:30 pm
This week has been very difficult for me. I seem to have just gone downhill fast.
I thought I was doing pretty good then all the synptoms startede coming back.
It seems that IVIG lasts about 10 days. I get IvIg on friday.
This attack seems to be quicker and worse than the others. I am having trouble typing this post.
I also started Cellcept last week. I fell tonight on the tile floor. Did not realize how weak I had become.
I am just so very tired…mentally and physically. You all seem so strong and I feel so weak. I feel like I am losing hope.
I am tired of the burning,tingles,numbness. spasms,cramping.insomnia,depression,weakness,and tears.
Our lives revolve around the symptoms and my husband working like a crazy person to keep up with medical bills. We have no insurance and make to much for govt help. My Ivig tab is over $35,000. We have done ok with the doctor’s bills. The cellcept tab is $800 a month. My doctor keeps saying he is following protocol. He says the enxt step would be PP. Great I can afford that for sure. He has aslo sent 2 referrals to UT Southwestern Med School and they say i am in the system and they have a long list of people.
What happens once IVIG fails? I know that cellcept takes 3-4 mths to achieve results. What happens after tryong all this medication and the symptoms just do not stop and keep coming back???
I feel like i am being eaten from the inside it. I cry all the time. My face is always tense in pain. I am on elavil and neuroton. I amjust down right miserable. I am sad all the time.
I am just very overwhelmed and just tired. I really do not want to be on this earth any more. I just wish I would go to sleep and not wake up. It is all too much to deal with anymore.
Thanks for listening,
AnonymousSeptember 27, 2007 at 12:54 am
I’m so sorry to hear about how bad of a time your having. Though I do have insurance, my insurance only covers 70% of my infusion. My infusinon company has me on a finincial hardship scholarship type thing and they absorb the rest of the cost. Is there anyway you could call up your case worker there and see if you qualify for such a program?
I hope things get better.
AnonymousSeptember 27, 2007 at 5:18 am
There are times when I feel exactly like that – the burdens we’ve been asked to carry seem to be too heavy for what we are able to deal with at times and the constant medical battles leave us too tired to think properly. I now what you mean about your life revolving around your symptoms, I can’t tell you how many times we’ve changed plans because I didn’t feel well. Now we just don’t make plans.
Everyone struggles with losing hope every now and then, and what you may perceive as strength is courage. There are many times when I feel like just sobbing and feeling sorry for myself and my husband but that kind of thing feeds on itself for me. The more time I spend crying and depressed the harder it is for me to get better. This is why you will frequently find me making silly posts, I’m not always in such a good mood, sometimes I fake it…
As for the Cellcept, it should take a couple of months to kick in and I really wish I could give you all the remaining pills I have, they took me off of it. If the Cellcept doesn’t work, it sounds like plasmapheresis is next in line for you. I hope that will clear your blood of the confused antibodies and you start seeing some improvement. I am sure it is really depressing to continue to go downhill – I tend to go up and down, not steadily down.
As for the government help – Disability doesn’t have anything to do with your income – Social Security Disability Income does – are you sure you are not eligible for disability? The only reason I ask is that I assumed that my husband made too much for me to qualify for disability but no where on that form was there any question about my husband’s income. On the SSDI form there were lots of questions about income, investments etc. Note that I haven’t gotten an answer on the disability yet but it’s only been a few months.
I am so sorry you are hitting the bottom right now Valerie. I’ve been there too and still visit at least monthly. I wish there was something I could do to help but I’m sending you a forum-hug in the hopes you will know that I care about you.
AnonymousSeptember 27, 2007 at 10:46 am
Valerie I just want you to know that my heart goes out to you!!! Please do not give up! I will keep you in my prayers I know that sometimes it does not help to hear that but it can bring some comfort. I am glad you can let us know how you are feeling. Do you have some one close by that can spend some time with you so you are not alone? We all know some of what you are feeling yet it is still different for us when we are at different places at different times. I send you my love and hope.
AnonymousSeptember 27, 2007 at 11:58 am
These are syndromes that cause REAL grief, because after all, we lost the way we were. And they are syndromes that we get better from very slowly, you must look at years, not months. I remember my falls, they lasted for two years, then they ended, any fall now is a “normal” fall that can happen to anyone. I am now in my ninth year of CIDP.
I think this forum needs about three more threads added so that we can help each other better. We need a state by state list so that we can link with each in person. We have several members from Texas (I think that’s where you’re from) and one might live near you. We need a thread so that you know where to turn and what to do when you don’t have insurance. And we need a state by state list of neurologists who understand GBS/CIDP.
Valerie, if it would help you, just click on any members name and ask them to call you. We’re here.
AnonymousSeptember 27, 2007 at 4:34 pm
Hang on, please…you will feel better once your meds are working. Like Julie
I got off Cellcept because it made my symptoms worse…you might go and
see your neuro again – you are taking quite a bit of meds. There can be
some reactions, physically and emotionally.
I, too, wish I could send you my Cellcept…it did more damage and sent me
back to the ER three times…I didn’t wait 4 months for it to work. My IVIG
is all I take now. I haven’t been to the hospital since.
It is very sad that we go through all of this, but one thing…you will find a
drug program that will work for you. As far as PP, yes, that is very expensive.
My last neuro wanted to try that and I said no way…that’s why he is no
longer my neuro…it’s too expensive and it is a process that goes on for a
I know how you feel, but this will pass, once you see the downward turn
stop. It will…trust me…we all have been there more than once.
Keep your faith and know that this is temporary for now.
AnonymousSeptember 27, 2007 at 8:18 pm
It seems that no matter the degree of struggle, hopelessness is right around the corner. No one is exempt. And it is a completely appropriate response to a disease that insidiously attacks and may or may not respond to various treatments. I get more emotionally diabilitated than I do physically and I think it’s the unknown and the randomness of this whole thing that wipes us out. I am so glad that you came here and got honest rather than to act on those feelings of hopelessness. Just yesterday I was thinking about dying and then I was told that one of my child clients died from his neuromuscular disease, a month after his sister who had the same condition died. Both had just turned 18 and 19 years old and their parents are just devastated. My point in sharing this is not to say that because others suffer worse we shouldn’t complain, but to know that at least our condition is not going to take our lives and that neither should we when we have the ability to live. As hard as it is. I don’t mean to be preachy, I guess I’m just trying to help us both see things differently. And to tell you you are not alone and you are being heard. Please keep talking. If there is more you need please ask.
AnonymousOctober 7, 2007 at 1:35 pm
I remember those feelings. I was sick, afraid, and I was allergic to Ivig. I ask my Mom to pray to God to take me. After that week I continued to go downhill. We tried steroids, plasmapheresis, with little result then on to cyclosporine. I thought it would never get better. That was in March of 1999. Shortly after the cyclosporine it started getting better. Everyday I could do something new. I went from bedridden-to wheelchair-to walker-now I am on my own (I do have footdrop that appears permanet). I still have pain, but I have learned to cope. I may never be 100% again but I am here.
You hang in there, With the extent of your medical bills you may be eligible for state help. A medical card would cover what other insurance does not, they also help with meds. If that is not an option check with the manufacturer of your medications. A lot of them have assistance programs. Remember the collectors can bark, but they can’t eat you:D . A lot of them are very good to work with your situation. On the other end, you have gone through a lot of change, places like this board are great. It’s hard to find others like us. I also went for counseling and that helped a lot. Maybe it is an option. I am on antidepressants to help with with the depression that comes with chronic illness.
Finally the pain. I have days I wish I could crawl out of my skin. I am on meds but I do other things too. I have a relaxation tape. I light some candles, lay in a dark room away from everyone, and listen to it. I take hot baths ( I like those bath salts too;) ), sometimes I just sit on the porch and let the sun hit my face, or try to read a short story to take my mind off it.
When you don’t think you can fight anymore, dig down and fight a little harder. Remember the people who love and care about you. Take time to take in the simple things you take for granted. We are all here for you. I bet you will do just fine. Good Luck and God Bless.
AnonymousOctober 14, 2007 at 7:07 am
Thank you, Thank you from the bottom of my heart. It has been 3 wks since IVIG and starting Cellcept. Monday I am getting IVIG too.
I am so very sorry for not responding sooner. I have been reeally fatigued and sleep alot.
Is is normal to sleep so much(16 hrs a day). I seemed to also have lost my appetite
Dana, The infusion company is giving me a huge discount. We think it is at their cost and I love my nurse.
Julie, I completely relate to the crying feeding on it self and not helping me get better. I also fake feeling good especially around my 4 yrold nephew and 2 yr old niece. Thank you for the other advice and the hug and just for caring about a comlete stranger.
Peggy, Thank you for your prayers. Yes I have lots of people around me. My husband works from home(a huge blessing). My son lives here and even though he is dealing with his own health is a big help. My sil comes and brings the 2yold niece and 4 yrold nephew. You cannot be any thing but happy around them. The kids help my spirits. I am still Aunt BaBa to them.
Cody Stanley, Thank you for the bear hug. I love your pictures you add to the post tooo cute.
Miami Girl, So sorry about the cellcept, so far I am doing well with it. I love you tenacity dealing with drs. i sure can learn from you. Thanks for the response.
LaCala, I am really dealing with the unknown and that is very difficult. Yes, there are so many people dealing with terminal illness and chronic illness that sometimes I lose perspective. Thanks for caring about me.
Jp, Your story gives me hope. I know it is a matter of time to find just the right treatment for me. We are looking into help with the meds. Right now we are fine. I think anitdepp may be my next step. My husband is on 2 meds to help cope. He has a tremendous burden of 2 ill people in our home that he is responsible for their care.
Ya’ll have been so very helpful. I am grateful for you being here for me. Everyone’s wisdom and true caring for a stranger is amazing to me. So sorry for the rambling but I write like I talk alot.
God’s Blessings for continued health for us all,
Love and Friendship,
October 14, 2007 at 8:02 am
If you haven’t done so already you should try med help, it can give you the name of each drug company and the info for getting help with all the different drugs. Before the part d insurance kicked in my meds were running about $2500 a month, I had 4 different drug companies sending me my meds for free. I still get help for one. It takes a bit of paper work and once I had to do one twice but once it started it was a God send. It also helps when sending in the application to do a cover letter explaining the disease and the other meds you are taking. Hope this helps.
I’m going through a bit of a blue period right now. Happens every fall when I realise I’m going to be stuck in doors soon. Plus going home to Nevada always makes me wish for my old life back. Sometimes it feels like I’ve been sick forever and everything is an up hill battle. Usually I’m upbeat but figure that once in a while I have a right to be cranky. It’s a hard road we’re on. Keep your chin up and lean on your friends here.
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