Holiday Blues and flair-up
AnonymousDecember 18, 2009 at 11:06 am
Well it seems that everything is going the wrong direction lately. I have been getting weaker and now my right hand is getting more “clawed” everyday. I’ve already lost the nerve function in my lower legs, ankles, feet and my left hand. Christmas has become less than enjoyable since I lost both of my younger brothers a fews back and my parents divorced the previous year. My ability to stay positive is being put to the test and I’m losing. My SSDI added to my wife’s income doesn’t leave anything for new doctor visits or new treatments. I have discontinued pain meds because of the cost but the pain is so bad and never stops. I am so sorry to complain to here of all places. I stay at home to care for our daughter and get a little time on mon, wed, fri mornings when she goes to day school at our church but I spend that time cleaning up or resting because of my pain. I used to be this smiling, poaitive and fun guy…now I’m lost inside myself. I just needed to vent so thanks if anyone reads this. Merry Christmas.
AnonymousDecember 18, 2009 at 11:32 am
[I]Mac, I don’t know what to say. But I would suggest a good neurologist and a good pain management specialist. And once you have them in place, perhaps a CIDP group in your area where you can vent and laugh and cry and support the others as they support you.
May your New Year be bright and full of hope and renewal.[/I]
AnonymousDecember 18, 2009 at 7:56 pm
I know you have a tough case of CIDP. I do hope that you can find some relief.
I went through a really rough period of time a few years back. I had no job, no insurance, was waiting on my disability application. Christmas was coming around and I had nothing for the kids. My brother had just died from cancer and the medicine I could afford was causing libido problems as well. I was totally depressed and had no desire to get out of the “funk” I was in.
I talked with a person at Vocational Rehab who was trying to help me with part-time jobs, etc. He told me to have faith and hang in there and I would get THROUGH this time. Not that I would get by, or around, but THROUGH.
After a little bit, I began to see what he meant. There was no easy way around, but a tough way THROUGH. I worked at it, several people helped me financially, the disability came in, and things got better over time. I am still working through my life, but I am making it.
Things are always tough, but there is light at the end of the tunnel. The tunnel might be pretty long, and quite dark, but you walk through it one step at a time.
Many of us understand where you are, and I know your battles. You can only win one of them at a time, but keep on tackling them. People will understand, but if they don’t they weren’t really friends anyway.
write me if you need to
AnonymousDecember 18, 2009 at 9:21 pm
I don’t know if it will help you any but another web site [url]www.neuropathy.org[/url] lists a support group in Greensboro. If you want to look into it just go to the web site click on RESOURCES then SUPPORT GROUPS then your state and scroll down to Greensboro.
We may not have answers for you but we do feel what you feel and you can vent and talk to us anytime.
AnonymousDecember 19, 2009 at 2:33 am
I know you are straped for cash but there are antidepressants out there that might also help with your pain control. ask your neurologist. depression is not just a mood its a chemical imbalance that needs to be corrected. Pain, illness, new limitations, the isolation of being a stay at home dad are all contributing. I know exactly what you are going through. this pain takes the wind out of you.
AnonymousDecember 19, 2009 at 10:48 am
When life is hard, try to focus as best you can on ways that you are blessed including maybe taking time, despite feeling low, to write each day about something that is a blessing to you–most importantly of all, you have a wife that loves and supports you and a little girl whom you have the blessing to be able to spend a lot of time with and see her blossum and grow. It is the people in our lives that are the most important of all. This world is so much go–go–go now, but spending time with people you love is more important than what you do with them and way more important that what material things you have. Tell them you love them and appreciate them and that they bring joy to your live and you will find that you do feel a little better. Plan things to do together that do not take much effort to do–watching a movie, playing a game, making up a play, making cookies (many recipes can be made ahead or in parts).
By no means is this minimizing the impact of your health on your life, but it is trying to chose to yell out to the world that YOU are not defined by CIDP. This being said, it is really, really hard to be positive or have hope if you are in constant severe pain. To increase the chance to be a positive, fun, smiling guy, you may need to prioritize medication for pain or pain/depression (as Tara74 says). I know that a lot of us have had to say that “I cannot show who I am the way that I used to do, so I have to learn new ways to show ME to the world”. I do not say this as someone at peace with the changes in my life, but as someone who is SOMETIMES at peace with myself in a changed world and still trying to work through to more time at peace.
WithHope for more love between people and for more peace throughout
AnonymousDecember 19, 2009 at 11:33 pm
Mac my son takes cymbalta and it helps with pain and its an antidepressant. lyrica is also another good one to take. I prayed for you tonight and hang in there it will get better. I have seen my son, ryan 21 years old, he also has a bad case of CIDP go through some dark times. its not easy and its very overwhelming.
Do you have SSDI yet? You should get on medicaid once you get approved for SSDI and medicaid should cover your perscriptions. I hope you can get back on your pain meds.
AnonymousDecember 20, 2009 at 7:58 am
I also read your post under, “CIDP AND RELATIONSHIPS”.
I gotta get you going.
Look–I have advanced CIDP, and am dieing. But I am not in the “black hole” you seem to be in.
You are getting worse, because you are not getting treatments.
So now you have SSDI. Here in California, that automatically means you can be covered by “Medi-Cal”, of which EVERY state has it, it just goes by a different name. It is basically Medicaid–for people who are disabled, but are under 65 years of age.
Now you gotta do the red-tape bit–I did it, and have Medi-Cal. By the way, mine was handled through my “County Health Office”. Just an interview and paper work, and you get it.
THEN YOU NEED TO GET TO A NEURO NOW!!! The Medi-Cal will cover the costs. And my Medi-Cal covers ALL of my med costs, (and I take a handful of pills three times daily). You need to at least get started with the normal protocol of treatments, whether you start with IVIG, Plasmaphereses, or whatever is suggested–but you have to DO THIS NOW. And tell him you do need Cymbalta or Lyrica, to get out of your “funk”. I personally do not take any anti-depressants, BUT YOU NEED SOME RIGHT NOW.
The County people show tell you how it works–you go to a Neuro-Clinic–usually a teaching hospital or a Medical University. All covered by the state aid. It will be obvious to them that treatment is needed right away.
Once you get some treatment going, and find one that works, you at least can be cleaning the house while your wife is working. Perhaps even getting dinner ready when she gets home. Think of it this way as well–it would be of great cost if both of you were not there, to have someone babysit your daughter. So, you are a stay-at-home father, raising you young daughter.
Now, just get some treatment going, and you might find yourself doing more at home, and feeling like you are helping out more.
Pain issues–remember–I am dieing from the effects of this damn disease, and yes, I have pain. But I manage it by time. When I first get up in the morning, I pop two Vicodin. But I also take 20mg of Ritalin, which gives me energy in the morning. Around 11am-12noon, I take another 20mg of Ritalin to get me through the afternoon with energy, with 2 more Vicodin. At 4pm, I take a Marinol pill, (the pill form of Marijuana–legal in California), to help me lose my nausea and be able to eat my one meal of the day. But at 5-6pm, I also take Hydrocodone as the pain is at it’s worse. So, I eat a small meal, then hit the sack.
TREATMENT is the name of the game with you–and you’re not doing anything about it right now. At least make some calls about this. You will see things will start coming through. You want to keep your wife, and things are bad now. So start at least trying to get the treatment without cost.
If you ever want to email me, you can do so at: [email]firstname.lastname@example.org[/email]
I was orphaned at 5 years old, and had two younger brothers that we were very close, and have both died at their own hands withing the past few years. I am dieing from this CIDP.
I have a lifemate of 27 years, and we are as close as can be.
Yeah-sometimes things can be tough-but we get through it.
GET TO WORK ON GETTING YOUR STATE’S MEDICAID !!!
All my best,
AnonymousDecember 20, 2009 at 7:01 pm
I agree with Ken. You should qualify for some type of insurance through your state. You NEED to look into it.
December is always a hard month for me. Emily was dx’d with GBS Dec 28th 2005. She was put in the hospital on Dec 27th. I hate December! I always get really depressed because I think back to the day when our lives changed forever. Also this is the first Christmas without my Grandma who died over the summer & I’m really missing her.
It’s hard, I know, but you NEED to get up & move as much as possible. Get some sun – and get on the phone to figure out how to get that insurance! You will feel SO much better if you have something productive to do (I’m doing laundry to keep my mind off of how much of a funk I’m in).
AnonymousDecember 20, 2009 at 8:46 pm
I’d had my danged ‘disease’ for 8 months and had just changed neuros on my first CIDP holiday. I actually felt that I HAD to have a live tree, like in my ‘kidhood’ to just smell and see a real sense of Christmas! A good friend and neighbor picked up on this and my present from her was a perfect tree!
I say this not frivolusly but only to not that this friend died this year, and is one of many folks who died this year that I’ve not yet had time to mourn properly for. Due to other medical issues.
Christmas isn’t about THINGS! It’s about caring! Dick and Kedaso have all said valid things and now you should go find out about Medicare supplemental for disabled folks and go and web up stuff and read and learn and FAST! I do believe there are ‘time’ limits from diagnosis to application… so Web up SSDI and translate the details into your situation in your spare time?
Dick and Ken are both right? YOU MUST GO THRU THIS ALL to get to something that works! It’s not like you asked for this condition! Nor did I! But to get to where you can get treatment and not lose all, you must work at it and work hard. You have your brain, put it to work! – Enough…Hopefully I’ve given you and additional shove you need in the right direction!
December 20, 2009 at 10:06 pm
I am truly sorry for your situation, but if you were once a fun-loving and happy guy you can be yourself again, I’m sure. You will overcome.
So many of these responses here have been wonerfully caring, supportive and practical from those who have been there.
I not only hope you have uplifted and set into gear by these great people here, but I also hope you will definitely e-mail Kedaso with any concerns, thoughts, questions or even just to vent.
You must get medical attention immediately if not sooner, because if this disease is not stopped in its tracks it causes irreversible damage.
We are rooting for you, praying for you and blessing you and your family.
Keep us posted, ask questions and discuss your concerns, but whatever it takes get some healing treatment and something for your pain. Your little girl and your wife will benefit and so will we.
AnonymousDecember 21, 2009 at 2:16 pm
Your tearing me up here. The Best that I can tell from your post is that you are not receiving any treatment whatsoever. I do not really understand.
You are eligible for whatever treatment you need. As disabled as you are, you should be getting Medicare or Medicaid or state level assistance. If not please get the doctors to assist signing you up somehow. Get a lawyer. you may go upside down doing it but thats better than the strain your putting yourself in. We will support you.
I know its not easy. just ask questions on this site, and someone will instruct you how to go about it. OMG is sounds like your taking the ultimate hit.
Your in our Prayers thats for sure. All the best to you and your family.
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