So I was diagnosed in 2013 with CIDP. It has really been hard on me as I am 20 and still trying to figure out who I am in general- my family life, work life, friends- all have been impacted by this.
My Main questions are these:
do you know anyone who is 20 who has CIDP-- are you 20? Haha I’m looking to network with others my age- I know it would help me immensely in so many ways – on so many levels!! What has worked for them? Any advice?
I need to find part time employments- but obviously CIDP does give me some limits- I have the pain and numbness in my legs and would really prefer to sit for a job! However- I need an ENTRY LEVEL position because I have no prior experience (except food service in high school!) and also I do not have a degree! Is CIDP considered a disability in this regard? I know there are resources for disabled people- so I’m only curious!
has anyone completed a degree program while dealing with CIDP?? My family isn’t very supportive at this time because to them- I appear to be a failure. I am trying to achieve high education but it is proving quite difficult because frequently my pain is overwhelming and I can simply not attend classes. I guess that does make me a failure but I didn’t ask to get CIDP- so I guess the bigger question in that regard is what advise would you give to a young woman- who lives at home still with only one parent from divorce- who wants to better herself and achieve a degree- and hold a job- but find everything so difficult to Handle on top of this diagnosis??
I guess I’m just looking for an open discussion- like I said I am only 20- I’m young and I just want to be “normal” like the other people my age who dance at clubs and have fun! I have really been having a lot of depression and I would just like to talk!
I also feel it’s necessary to note I am a believer in Jesus Christ and Christian teachings- and feel open with anything anyone can offer in that regard.
Thank you kindly in advanced for any support!!!
Age is no barrier. No matter your age, the advice I got from my Neuro more or less said it all - "suck it up and get on with life". A bit of tough love there! But about spot on because as you have already found out - not everyone understands what you are putting up with.
I can relate to the leg issue. Here it gets to how determined you are. I have found that if I have something interesting to get on with I can, to some extent, "tune out" those messages. However, routine (no interest) work and the legs get to be a distraction. Where you go with study/work will most likely depend on how well you can do that "tune out" and part of that goes back to "get on with life" and sheer bloody-minded determination to make that silly lecture "interesting".
You can do it - that is your challenge. Read around the posts here and you will find everyone is different. The determined ones get on with it and you will find in those posts that there are certainly worse things that can happen to you.
Perhaps your biggest challenge is getting understanding from friends/family/etc. Just remember - you can tell someone many times but they just don't have the experience and may never entirely "get it".
Well said Michael!!! I totally agree and dear Jessica it does take time to realize and understand the “new you” with CIDP. Don´t make excuses for not realiziing your dreams…you go girl!!! Cultivate your interests and keep busy. Try to dance!!! Maybe it will look and feel different than it did before, but you are dancing, so who cares??? I do not talk about my illness anymore to anyone because I do not want people feeling sorry for me or making concessions. I can do all things through Christ who strengthens me! Oh, and be sure to drink plenty of water:-) Big Hug!
What types of treatments have you had? Are you receiving ongoing treatment? Are you exercising/stretching on your better days? You sound depressed, which is understandable, are you getting any counciling?
Jessica this is the rt site for you - u have a long road and your young- but make your youth your ally - dont give up on your dreams view CIDP as a hurdle - suggest you journal your progress, feelings and hurdles!
Here are couple ideas-
1 determine your resources and allies - at your age you might be on a parents insurance - get insurance info - get to know what it covers - call and go see a represenative include them in your team-
If no insurance you will most likely qualify for a medical card - do the same thing here identify a person who you can go to who works with the government and handles the cards -
You have your first team member they can also advocate for you - with the card or insurance GET TO KNOW NUMBERS, DETAILS, PROCESS, LIMITS ETC.
Next the diagnosis and tests start with your primary care doc- then hopefully a neurologist hopefully one who has understanding of CIDP - a free resource DR PHIL go to his web site he has a doc on call deal if you have a cell with face time call them!
You need a good doc and diagnosis
For next steps-
Identify a community c
COMMUNITy college or university close by to young- maybe 3- that is close to public transportation unless you drive and that has an academic program that interests you- nursing is fantastic-
Full out applications for admission to each - fill out the FAFSA financial aid form and include the name of each school and there contact info- if yOu have one u like best call them and ask for help which they will gladly provide- another member of your team- they can also tell you which admissiOn test to take most likely ACT or SAT. These are not big deals but are important and your local library will have study guides or even software you can use to prepare- add the librarian to your team-
Get in school identify a prof in your major see them often and cultivate a supportive
Relationship - if you can get a diagnOsis of CIDP and doctOrs diagnOsis of disability it would help get a more permanent medical card and the help of your state dePartnent Of vocational educatiOn in getting help with college- IDEA individuals with disabilities act assures the rights of all individuals in the US- if you need help identifying resources your state human rights council or state attorneys general can start you on this path- BUILD YOUR TEAM AND INCLUDE US!!! Keep the faith saw that in your poste prayer and meditation always very important- praying for YOU
I also want to add that even though you are young, PLEASE listen to your body! Too often we try to do too much to feel “normal” and in the end pay for it physically.
When looking for insurance, if you cannot go through your parents or afford any on your own, don’t be too proud to go through your state! Because while searching for a neuro(look them up through hospital directories and verify whose specialty is GBS/CIDP)you will be covered for all meds you may need.
Depression, although I hate to say it is a normal part of this disease, it doesn’t matter how old you are. Usually with the pain they most likely will give you cymbalta, it will work for both.
If you have a neuro, and you had all testing done and he/she said you are disabled file for SSDI, they will verify that. Be aware that you’d have to be considered disabled for at least 5 months by the doctor to receive benefits and that you receive an amount of how much you paid in for taxes.
Do online classes, and maybe one class on campus. Go with your heart with what you want to do! Brainstorm, write it all down then look up what career closely follows.
Keep your faith, but remember the you have a disease that cannot be ignored. Dance, go to school, look for a phone job(taking orders etc), and try physical therapy for the stretching and exercises to prevent wasting.
I’m a lot older, who had dreams. I have an AAS, two children and had a man who left me when I got sick. I’m permanently disabled and my 21 yr old put her life on hold to take care of me. I hope you get the support you need, if not at home, you’re welcome here.
Great comment/advise above. Read them several times. Think about the hardest thing you’ve ever done.
How did you achieve that success? This will be a lot like that experience.
Prayer will help too.
Make up your mind how to get what you want and be open to change. Maybe you need to think of different ways to accomplish your goals.
Become a “MacIver”!! That’s an old tv show where the star used every day items in different ways to get himself and others out of difficult situations. You are likely already doing this if you’ve lost some function due to neuropathy.
KEEP UP THE FIGHT. BUILD YOUR TEAM! Find someone to help you advocate for yourself. You will sometimes find it hard to do this yourself. AND don’t be afraid to change Drs if the current one is not engaged with you or knowledgeable enough. I went through 3 to find THE Neuro who is knowledgeable, engaged with me and willing to discuss rather than lecture. I truly feel I am not a number or “the next patient”, I am the guy from— who does— and has been ----.
And Don’t worry too much about what strangers think when they see you struggling with a cane or crutches, a walker, or a wheel chair. Many will help with doors, but some will just stare. No biggie, just keep doing your best. Best wishes for you, Jessica! Good luck and prayers to you. I pray you find peace rather than worry and find all the help, treatment and training you need to find success, and recovery! Capt. Mike
I'm new to the site and like yourself I was diagnosed with CIDP in 2013, I am a Christian and have always put a strong emphasis on my faith. I do not know if I am qualified to offer you any advice but for all it is worth the first thing I did is to not take a "victims" approach to CIDP. I did a tremendous amount of research into diet, fitness, medication etc...and the outcome is that I am noticing a change in my well being.
It may be worth noting that the IVIG treatments did not really help me and I refused to let that get me down, Look to see what you can accomplish vs. what you can't.
Jessica and all, the following story maybe familiar to you but it’s the best description I have seen concerning explaining to others about your new limits.its called The Spoon Theory and very much describes our new limits on what we are able to achieve in a day. http://www.butyoudontlooksick.com/wpress/wp-content/uploads/2010/02/BYDLS-TheSpoonTheory.pdf I hope this will help you to explain to family and friends at least part of you new life challenges.
Thank you all- I really appreciate all of you comments- to answer some questions: I have had 2 IVIG treatments, I take meds daily not only for CIDP(gabapentin,hydracodone) but I also have hypothyroid, PCOS, ADHD, and high blood pressure(metaformin,metaprolol,cymbalta,vyvance,sprionalactone,synthroid,and a range of vitamins!).
I am enrolled at a local college but because I recently broke my leg also I just had to medically drop some classes- however I can sign up for more classes that start later after that process is over.
I have an excellent Neuro who I really got lucky with- she is extremely personalized.
I was getting great support from my mother- but she recently told me she is “tired of it”- we have a bad relationship to begin with and I want to move out of this house very badly!
Hope this answers some questions
Love reading the spoon story, it really does explain what we go through. I have a young family, a husband with a broken leg for past 13months a business and 2 horses to look after as well as dogs bird etc. I love life and look for what I can do. Some days you can do more than others. For me, I find pease with the horses, I always find a bit more energy when i’m with them. I couldn’t get on my mare myself for some time so I just climbed (draged) myself onto the car and somehow managed to get on my marefrom there. while riding I almost feel normal. Happy! That’s what we all need to hold onto.
Oh Jessica, I'm feeling for you. It's a great sign that you know what you want, and are reaching out for advice and perspective.
I am not in my 20's - I am 67 - but I was diagnosed with CIDP in my 20's and have lived with it my entire life. During that time I found a program at Loyola Marymount that allowed me to work on my college degree part time, and then I finished at UCLA with honors, even though I had to drag myself up staircases sometimes, and had two young children and a demanding husband.
I then headed up a large group for the 1984 Olympics in Los Angeles, started my own meeting planning company, and ultimately became an executive at a large entertainment company. Sometimes I had to work from home. Sometimes I was in an electric scooter, sometimes my face was swollen from steroids, or I had the shakes.
Several years ago the doctors put me on an anti-depressant which I really didn't want to take, but it makes a huge difference. Even the most positive of people have a difficult time with CIDP. I've been called "PollyAnna" because I'm optimistic to a fault, but I still take Zoloft and am really happy to have it. Sure takes the edge off and doesn't let me go to a dark place.
I love to dance too, and managed my own style of that depending on by ability at a particular time. You don't have to be a Dancing with the Stars person. Sometimes just standing in the middle of a dance floor and moving to the beat is enough.
This message is not meant to brag about my accomplishments. I feel humble and blessed to have had a full and happy life. I wanted to share with you so you can know a full and happy life is possible. With determination, faith and a positive attitude you can do anything. As others have said on this site, build your team of doctors, family and friends and go after what you want.
PLEASE immediately Google Dr. Richard Burt, Northwestern University Feinberg School of Medicine in Chicago. Dr. Burt has the only trial in the US (altho it's been going for 14 years) which has been curing CIDP. He does not use the word Cure but I do because he stops the disease & no more meds or treatment is necessary. He has put hundreds of MS patients in "permanent remission," started using it on CIDP & Scleraderma a few years ago. My son was near deatg from CIDP. Stanford, UCSF, & Mayo in Minn. had nothing for him except the usual IVIG, Plasmapheresis, & steroids that had already failed to even slow the disease. You owe it to yourself to explore Northwestern Univ Memorial Hospital, a first class stellar facility if ever there was one. Btw, none of the prestigious medical centers he went to told him about this. I do not know why, nor will I ever understand it. The GBS/CIDP Foundation knows about it but refuses to publish the info. Dr. Burt has had reports published in Lancet & other highly respected journals. But my son had to find out about it from another patient who'd been successfully treated by Burt. He uses your own stem cells to build a new immune system (after he chemo-s away the old one that's attacking you.) I understand that there are a lot of scam cures floating around raising false hope. But, please believe me, Northwestern is a 1st class research center & Burt is head of Immunology there. This is NOT a scam, and you should not be deterred by the lack of knowlege of it from your treating doctors.
Hi Jessica… I was diagnosed with CIDP 12 years ago… I was 22… They had it under control with IVIG for about 11 years. Last year my disease spun out of control. All the treatments stopped working. The only thing that would work is plasma pharesis & I had to get admitted to the hospital every 2 weeks for 2 weeks… Then my Nero in NY told me about Dr Burt & what he is doing for CIDP pts like me that have stopped responding to treatment… My Drs down here in FL tried Steroids, IVIG, Cellcept, Rituxan, & now plasma pharesis… Last time I was in the hospital they nearly killed me. I went into a quadriplegic paralysis & almost had to be put on a ventilator. Last week I finally had my appointment with the Drs in Chicago (Dr Allen & Dr Burt) they accepted me to the clinical trial for the stem cell transplant They have submitted for an auth from my insurance & then I will start my treatment. He has had a very good success rate so far. I can personally recommend you call & get an appointment with them. I have 2 kids & am about to get my life back. Good luck!
Thank you for sharing The Spoon Theory. It pretty much sums up what life with CIDP can be like. I’ve stopped beating myself up for what I can’t do and started to focus on what I can. The disease beats you up enough all by itself. I have learned to surround myself with people who bring out my best qualities and distanced myself from the ones who pull me down. Staying positive is crucial to our well being. Jessica, I’m glad you found this support group. It is full of kind and caring people who understand exactly what you are going though. I hope you can find the help you are looking for. May God bless you! Life with CIDP is different but it is still good! Take care-
They have submitted for an auth from my insurance & then I will start my treatment. He has had a very good success rate so far. I can personally recommend you call & get an appointment with them. I have 2 kids & am about to get my life back. Good luck!