What do I do now?
AnonymousMarch 7, 2008 at 9:50 am
I have had CIDP for almost 13 years now and it has progreesed slowly from my left foot to my right foot and now my left hand is very weak. A nerve test also showed weakening in my right hand as well. I’ve been very upset about this and what the future has in store for me. My family is no longer a unit of support due to the untimely deaths of my two brothers and my parents divorce a few years ago. I feel left out, alone and worst of all, a burden to everyone. I am in pain all the time and my extremities are getting so weak that I have difficulty doing chores while being a stay at home dad. I have been approved for disability but that victory has merely awarded me with permanent poverty due to the escalating costs of copays, food, and gas. I dont know what to do or how to stay postive anymore. I know I’ll gett worse and I don’t want to be a burden any longer. I hate this body of mine and I wish I could make myself happier and remain positive but I am reminded every minute of every day that I am ill and I will always be. I just needed to vent this because my freinds and family don’t want to hear it anymore. I am sorry to be a downer but I know thats what this site is for, to help us vent and to encourage each other. I want to be able to encourage myself and be above this disease but I have thus far been unable. Although the future is unknown I have a preety good idea that mine will be a life of limitation and poverty due to my illness.
March 7, 2008 at 10:05 am
What is your current course of treatment? Has ivig stopped working? Have you tried steroids? Is cell cept an option? I am so sorry for your mental anguish. Sometimes I feel that is harder for Kevin to deal with than the physical aspects. I am glad you know that we care here. You are not a downer, just a person down on his luck that needs a pick-me up. This is the place for such a pick-up. We care, I care!
Dawn Kevies mom
AnonymousMarch 7, 2008 at 10:19 am
I’m kind of struggling with the same thing right now. It’s hard to keep your self esteem up when you don’t feel like a productive member of society. You said you were approved for disability but have you applied for SSDI? That’s a separate process and could result in additional funds for you.
As for the chores, I think being sick makes us more resourceful at times, but I have to admit my house has been sadly neglected since I got sick. Look for Tide pens in the grocery store – if you just have a small stain they work pretty well to get it out and keep you from having to wash the entire garment. I also invested in one of those electric shower cleaners – it works pretty well too, and when they make one for the toilet and sink I’ll probably save up for them too. When I do cook I do my best to make enough for two meals, I serve one and freeze the other so I save time and energy the next time I’m too tired to cook. Right now I’m kind of searching for ways to reduce the work load here at home (like brushing the dogs more often so they don’t shed all over the house). It’s slow progress but then again… what else am I going to do?
I understand what you are going through and I completely sympathize with you Mac. Hang in there and come back and vent when you need to, we’re all here for you and never get sick of hearing of other people’s struggles.
AnonymousMarch 7, 2008 at 2:48 pm
[FONT=”Comic Sans MS”][SIZE=”3″]Mac
So sorry you are in such a rough place right now.
Some days it is as hard mentally and emotionally to get out of bed as it is physically, especially when you have financial burdens looming in your mind.
I hope that, as Dawn and Julie said, you know that we [I]are[/I] your Friends and Family, and that we care very much.
AnonymousMarch 7, 2008 at 3:40 pm
I think that the emotional well-being of patients is such an overlooked symptom, and I really believe that it is not given the attention it should. there are weeks or often months at a time when things seem so hopeless to many of us, especially when looking at the future and what may be in store for us. There was an article I posted a while back detailing the grieving process many (including me) go through – and I think for many, that grieving process is a vicious circle.
Gee, this doesnt sound as if its helping, however, it is so important that you realize that what you are going through is real and not a pity party. It isnt a matter of snapping out of it, or getting over it as some who have never been there seem to think. I havent gone through your posts to check and I dont recall what meds you are on. My feelings of inadequacy and all the other things that go with it, turn to anger and depression often. I’m so awfully sorry you are feeling this – wouldnt it be great if we all lived near each other and could get together for a talk sometimes, even if we look like hell most days 😮 .
AnonymousMarch 7, 2008 at 3:42 pm
Hey Mac …..i understand how you feel. I have CIDP going on 12 years now (since 1996) . I’ve been 100 % paraylised in my feet since 2000 as it’s a bummer for someone who was an athlete all my life. I was a big time basketball and racquetball player and wieght lifter at Golds and the YMCA….I’ve started lifting weights again on the machines but for a while i quit and got skinny as i was like who wants to see Hercules who is a cripple.
One thing keeping me going is the explosion of research like stem cells as i see Geron and Neuralstem are starting clinical trials on americans for neurological diseases this summer. I see on the ALS sites where Lithium is showing remarkable improvement with large clinical trials planned now. I see there are over 100 clinical trials and over 30 in phase-III for multiple sclerosis including orals (no shots or ivig etc..) so anyway hang in there as i believe they are getting close for all of us.
Yeah it sucks as im 43 in my prime as a trades man for my career and can’t work because of this CIDP but i try to eat well as that has helped and i can use the exercise bike and that really helps in the endorphins so i don’t get depressed and i keep researching all the different neuro disease sites and i’m an optimist so hang in there….
AnonymousMarch 7, 2008 at 4:42 pm
😀 Hello Mac34,
I was dx with CIDP two years ago. The starnge part is that I was in denial so bad because I did not have any of the symptoms except for foot pain. I read and read everything I could about CIDP and there was nothing happening to me that said I had this disease, as a matter of fact I was told that I was flat footed and had plantar Facistits (bad speller) now two years later right before Thanksgiving 06 I could not stand up or write my name. It just happend out of no where. I said all of this to say, that although I have had this disease for a while I’m just now starting the process of dealing with having such an illness. I so totally understand you when you say “NO ONE WANT TO HEAR ABOUT IT” I Have a wonderful husband, but he said that he is scared to talk to me sometimes because he knows that I’m going to talk about CIDP or IVIG or something like that, I have family members that I call and I have noticed that they keep their conversations short with me.
Mac, I’m proud of you for dealing with this as long as you have and I pray to God that I can withstand and improve with medication so that I can see my children go to college and get married, I want to see and hold my Grandchildren. Hold on Mac! I say this for you and me and the many others that suffer daily with CIDP.
Cheer up! Pay close attention to the good days, and when they come, Thank God for THAT DAY. If all you can do is lay on the couch today! then do it, if you can do more tomorrow then do that and try not to let your family or friends make you feel guilty for being sick, because none of of want this in our lives.
Take care and free your mind.
P.S I’m a terrible speller and writer and I have dozens of run on sentences going on, but who gives a darn. hahahaha I’m just glad my hands are allowing me to type.
AnonymousMarch 7, 2008 at 5:01 pm
I am sorry things are rough for you right now. And please dont apologize for being a downer. Maybe you can apply for the SSDI like Julie mentioned. Are there any hobbies you have that could help take your mind off things ? Have you tried going for another opinion or to a different dr ?
If I remember, the IVIG didnt work for you and we were kind of in the same boat treatment wise. I am still in a denial phase…my symptoms progress so slowly that I’m not noticing daily or weekly changes. I’ve been very busy with taking care of my mom and put myself on the back burner for the last several months. All along I had this thing in my head… I thought I was in remission. I wanted to believe that so bad. I’m not and I know I’m not. I keep a cane in my car.
Yes, I’m lucky to be able to walk, I know ….but the changes, the abilities that I am so slowly losing…well, the reality sucks. I hate relying on others or asking my husband or friends and family to slow down b/c I walk so slow.
I hate when I constantly have to concentrate on each step and days when I am really off balance.
I, too, have a small child and the thoughts of what I may not be able to do with him some day…haunt me.
I do still work full time but probably only b/c I have a desk job. I could not work every day if I had to walk alot or stand alot. And, its very tough getting up every day. I am so exhausted but that’s what I’ve just come to know.
You told me a while back some things about an AFO. I was being vain and worried what people would think. You told me people stare at you all the time and you never see anyone else like yourself…and you wear shorts with the AFO and the reason for the AFO is to enable a better quality of life. Basically it was a “so what if people stare…if you need it, get it”.
And, I did. I appreciated that you cared enough to tell me that.
And the people, well, they stare…and I dont care. At least I’m not falling down.
No, I dont wear it like I should…but I have it and I do wear it from time to time.
I hope things look up for you…I wish I had some advice or words to make it all better. I just hope you know and always remember you arent alone.
Cherish that little girl of yours…I’m sure you are her hero. Our kids have this wonderful magical way of making us feel better.
AnonymousMarch 8, 2008 at 12:54 am
One thing that might help is better pain control. Have you tried neurontin? I was started on cymbalta a month ago and it has made a lot of difference in pain. This medicine also can help the nerves in the brain with sadness as well as the nerves in the periphery with pain. I saw you have been on steroids. this can help the CIDP, but sometimes also affects the strength of muscles and, as others mention, lead to trying alternative therapies for better control of the disease and to limit side effects.
I understand very much the anguish that happens with not being normal or who you once were. I am sure you want so badly to be able to enjoy your little girl and have the strength to care and play with her. Hold tight to the joy of fatherhood which has much more to do with love than with what gets done.
With Hope for cure of these diseases.
AnonymousMarch 8, 2008 at 4:50 pm
I dont know what to do or how to stay postive anymore. I know I’ll gett worse and I don’t want to be a burden any longer. I hate this body of mine and I wish I could make myself happier and remain positive but I am reminded every minute of every day that I am ill and I will always be.
[COLOR=”DarkOrange”]Anyone that has dealt with CIDP for 13 years and a stay at home Dad has a lot of internal strenght.I know how upsetting it is to keep getting progressively worse and to fight the feelings that you are currently having. I’m ashamed to say i have some of the same feelings and have only been fighting for four months. I too am reminded every day of what i can not do, drive, cook, clean, walk, the list goes on.
I hoping for some new treatment, as they are working with different meds. Right now would settle for 50% improvemnt. Somehow am still fighting the always will be ill, but it is in the back of my mind.
As for staying positive do you have any hobbies or interests that can give you a sense of accomplishment or spiritual things that can bring a sense of peace.
[COLOR=”DarkGreen”]I do not know if you are on any, but have found starting a low dose anti-depressant have been of some benefit.
Also, am making myself spend a few minutes each day finding something to thank God for, five items, each day, every day. At least for that time period i’m focusing on something positive
Know you are with friends here that support you
AnonymousMarch 8, 2008 at 11:29 pm
[FONT=”Comic Sans MS”][SIZE=”3″][COLOR=”Blue”]Mac,
Don’t worry about “venting”. That what is place is all about. Friends listening to friends and trying to help each other out. After reading through all the replies, there isn’t much more I can add except to say hang in there. God does have a reason for everything that happens. I am looking forward to talking to Him about some of them. For example, why did He just make shorter trees instead of Giraffes with long necks? ;)[/COLOR][/SIZE][/FONT]
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