AnonymousAugust 23, 2006 at 10:02 pm
my fist symptoms of this disease began in the year 2000. very suttle, very mild, my life was too hectic to worry much about it. the family doctor gave me a very low dose of neurontin and it did the trick. as five years had passed by my dose of neurontin had crept up and up. as for this year 2006 it has been a roller coaster of medicines and doctors appointments. with this finally diagnoses of CIDP. i had word to understand what is happening inside my body. i understand it all too well and fear it to progress.
at this moment i am frustrated by pain in my feet and legs, my hands are heavy. my body does not want to move, but i have to keep putting one foot in front of another. yes, i am sick, but i have to take care of others who are sicker than i.
yesterday i started cellcept. that was very hard for me to swallow. me? taking a chemo agent?? i feel so many things now. scared, angry, PAIN, hopelessness, etc. i’ve dealt with many things in my life, but this by far is hitting me the hardest.
so, there. i have said my rantings.
even if u don’t feel the need to reply, the you can read this and say to yourself “i’m glad my day isn’t that bad”.
August 24, 2006 at 9:44 am
It’s completely normal to feel all those emotions plus a dozen more with this illness. First, it is frustrating to have an illness that most in the medical world have never even heard of. If you told people you had a heart condition or cancer, you would more than likely have 95% of those you told able to understand. With CIDP, I get blank stares until I say, “It’s like MS”. Even then people look at me and think
It’s hard on many of us because the effects of this illness don’t necessarily show on the outside of the body. Unless I wear my AFOs, the normal population would not think there was a thing wrong with me. Nevermind I walk like I’m drunk or have tingling/numbness in my extremeties. And my feet feel like Fred Flintstone feet – huge and heavy.
It’s hard to accept the changes this illness brings to our lives. I’ve realized the things I will never do…play sports, work to help the financial burden this illness has brought on, drive for more than a brief trip, etc.
But I’ve learned to take the ‘PollyAnna’ attitude and try to find the things to be glad about. I spend far more time with my children than if I was working. I see my family every month as I do my treatments in my hometown which results in my children spending far more time with their grandparents and cousins. I’ve met others in this forum that understand the illness and offer support and encouragement. I have two online aunts, Auntie M and Aunt B who mean the world to me.
It’s hard but I sat myself down one day and made a list of all the positive things I had going for me. I pull it out once in a while and am even able to add to it at times.
I hope you reach a point soon where it is not so overwhelming. We’re here for you and feel free to rant and get it out. We understand and have been there many times ourselves. I’m glad you found this site as I have found it made a big difference in dealing with my biggest challenge in life.
AnonymousAugust 24, 2006 at 11:15 am
Welcome to this Unique Family,
Rantings are ok and sometimes you just need to get it all out. We all have ranted and raved at one time or another.
If your pain is not being controlled on a low dose of Neurontin, then tell your Dr to up the dosage. My hubby was taking 3600 mgs a day and some others lower and some others higher then 3600mgs a day. It’s a hit and miss on what dosage will work for you.
As Mary said, no one sees your pain so they don’t realize how ill you are.We truly understand your anger and how scared you are. That’s why this site is a blessing to all who enter here. I think most GBSERS and CIDPERS know more about the illness and meds then any Dr does. They go by their text books and not the patient who is in front of their eyes.
So anytime you want to rant, go right ahead, no judgements here ever.
Take care of your self 🙂
August 24, 2006 at 11:35 am
Baby is doing fine and I am very well prepared for not sleeping once he arrives…he has kicked so much that the right rib is sore!
Flower – again, glad you found us. It is amazing that a group of people who have never met face to face can be the best support thru this illness:)
AnonymousAugust 25, 2006 at 11:50 pm
I am glad you are here. You have found a place where people have experienced the same as you. I suffered alone for quite some time. There was nobody to talk to who really knew what it was like. Everybody sympathized, but they didn’t KNOW.
Staring at uncertainty stinks. You don’t know how bad the CIDP will be, You don’t know how long the treatments will take. You hope they work, but aren’t sure. Your family has a tough time understanding. and so on…
I know. Many of us know… we have done it as well.
Take pleasure in your small victories, and keep your life in front of you. You cannot change the past, but you can affect your future.
There will be setbacks, our disease has them for sure. Mourn your losses. When you lose strength, or feeling, it stinks. If you don’t mourn, you can’t accept it and move past it. During CIDP, you will have to accept a lot.
But you can do it. If you feel bad, talk here. We can all help, we have been there before. When you feel good, rejoice. We have been there as well.
Take care, flower. There are good days ahead.
AnonymousAugust 26, 2006 at 10:47 am
Go ahead and rant, especially if it makes you feel better. I was recently diagnosed with CIDP, and am already feeling the fear, frustration, and pain. It sounds like you have other things going on in your life, including being a caregiver to others. You need to take time for yourself. Try giving yourself a little treat. I know this sounds silly, but it sometimes works for me.
Since I’m new to the forum, and don’t remember your other posts, I don’t know whether you have found a good neurologist. Having a doctor you can count on when facing a medical crisis/disease is of critical importance. I have some wonderful doctors, including a great neurologist and primary care physician, who are willing to take the time to listen to all my fears and complaints (in other words, my rantings).
Go ahead and indulge yourself in a rant every once in a while. I also found getting in the car, closing the doors, and screaming to be very cathartic.
Peace to you too,
AnonymousAugust 27, 2006 at 2:52 pm
grrrr, i still have rantings over this damn disease. my body feels like i have the flu all the time, except i don’t have and other symptoms besides the aches and pains and weakness.
been thinking about pheresis??? how bout you folks who have had pheresis?? any good results? i am in week six of weekly ivig. i am taking neurontin and cellcept.
funny thing is if i do the pheresis, it will be one of my co-workers administering it for me. i am a dialysis nurse and i have been awaiting training to run the pheresis machines, so i could probably weasle my way into getting paid to be pheresised and trained at the same time.
— frustrated flower
AnonymousAugust 27, 2006 at 8:29 pm
I had apheresis in Aug. and Sept. of 2005 and again in Jan. of 2006. Those treatments were for 5 or 6 days each month. I got a little stronger and certainly not worse. Then in Feb. – May, I was on a maintenance plan of once every two weeks. Upon hearing of Rituxan I requested that, and in June and July I had infusions, once a week for four weeks and no more pheresis.
The worst part of apheresis for me were the catheters with Quintons placed before each series and removed at the end. I had the tunneled catheter during the maintenance period. As some have mentioned, I had Benadryl and Tylenol before each apheresis and Tums during the procedures. I had no complications at all.
As we must remind each other frequently, each one with CIDP is so different. Our experiences can certainly help each other, but our expectations have to stay low and our hope high.
I hope and pray that it will be helpful for you.
AnonymousAugust 27, 2006 at 10:59 pm
I think plasmapheresis is very useful. I have had six treatment rounds (each round was either five or three sessions every other day) and they did wonders.
One piece of advice, more easily given than followed, is to be well hydrated before starting the procedure. I find that I get orthostatic hypotension if I am not well hydrated. Even when I am, we usually do a double rinse-back to add extra fluid.
Unfortunately for me, it looks like I developed a reactive production of antibodies, so that the duration between rounds was becoming shorter. My neurologist and I decided to try something else (IVIg), leaving the option of plasmaphersis and an immunosuppressant open for future consideration. Still, I would encourage anybody for whom it seems appropriate to try it.
As you know from being a dialysis nurse, venous access will be a big deal. I hope you have good veins. If not, you will get to identify with your central line patients in a new way. Should you need one, be a good patient and make sure you keep your central line well maintained.
If your work is like most places, it has a Cobe Spectra, which is a pretty cool machine. Gambro BCT has several of the usage manuals on-line ([/URL]www.gambro.com[/URL]), so go take a look at them. I hope you can get treated and trained at the same time, that would be a neat trick. One thing to watch out for is using long needles for the anticoagulant. One time, the needle pierced the tubing and lead to some amount of fluid (blood) loss. It was not a big deal, but the nurse did have to replace the tubing set, a relatively expensive option.
Maybe you could help me out. I would like to know what a plasmaphersis session costs, but because of how my HMO handles things, I have no idea. Any chance of finding out the wholesale prices of a 500 ml bottle of 5% albumin and of the tubing set?
If you decide to go with this, Godspeed.
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