This campaign is to help a single mom and 2 children catch up up medical treatments as well as obtain treatments not covered by insurance. We are also in need of help to cover living expenses and food for the next few months as income transitions as well as going without income for a month.
Hi There, My name is Nichole, I am a single mother of two amazing children.
I also suffer from Complex Regional Pain Syndrome (RSD/CRPS). A devastating neurological disease that is progressive, incurable and for the most part untreatable. It begins in the limbs and also spreads internally damaging organs and cresting other conditions and diseases. It is the most painful disease known to medicine.
April of 2015 is when my life changed in every way possible.
It all started with severe pain and loss of motor function in my right hand and wrist. After undergoing every test possible along with treatments everything should have been okay, but it certainly wasn’t. By June of 2015 the pain began in both of my legs and feet. It was then that we knew something was seriously wrong.
Immediately, almost overnight I was unable to work. The pain consumed every aspect of my life. I had lost more then 70% of my hand function, was having a very hard time walking and lost my ability to do even some of the easiest tasks like bathing, cooking a meal or even processing thoughts (memory, completing sentences, word finding)
While waiting for medical care to catch up with the severely progressing disease my diagnosis was discussed yet not confirmed. Finally in October of 2015 after undergoing many tests, dealing with Drs who were blindly stating that this was all in my head and watching life as I knew it completely deteriorate is when it became apparent that CRPS was most certainly what was going on. At the age of 32 yrs old I already had bone and cartilage deterioration as well as high autoimmune percentages.
The trial and error of medications began full force causing cognitive function to drop to an all time low. I was unable to function mentally and physically. My children began to suffer greatly.
After close to two years with this illness it is also affecting my entire digestive system, I am unable to hold food down and many of the medications I need to be taking. It has made me completely disabled in more ways then one could imagine.
It has taken away my ability to work and to be a good parent. I am unable to leave my home more often then not, let alone drive.
I’ve become a prisoner in my own body, and in desperate need of a home nurse to help me through my day. As well as a feeding tube to prevent malnutrition.
The most devastating part of all of this is that it has financially destroyed us. I have been unable to cover copay expenses and now not able to see most of the Drs that I need to, and they’re many treatments that I have been unable to do because I can not afford the costs. Some treatments that could potentially result in remission even for a short time or help enough to potentially work part time are completely out of reach as they are not covered by insurance and out of state requiring travel expenses as well.
My children are now going without the things that they need and we are weeks away from needing to go to a homeless shelter and have begun packing for this inevitable situation.
I am not sure what to do anymore, the thought of my children continuing to suffer due to the disease that I have completely rips my heart out. I’m scared to think of what tomorrow may bring, and in grave need of help in order to keep a roof over our head, food on the table and to receive the healthcare that is desperately needed.
I am reaching out to everyone out there to help us get through this troubling time.
Below is something written that describes this disease very well.
–Hi my name is Complex Regional Pain Syndrome… some friends who have known me for a very long time call me RSD or CRPS…… I’m an invisible inflammatory disease that attacks your sympathetic nervous system.
I am now velcroed to you for life. If you have CRPS you hope for remission but there is no cure.
I’m so sneaky–I don’t show up in your blood work, in x-rays, MRI’s can’t detect me, basically there is no test to prove
you have me. There are only test to rule out other things.
Others around you can’t see me or hear me, but YOUR body feels me.
I can attack you anywhere and anyway I please. And, I will. Constantly.
I can cause severe pain or, if I’m in a good mood, I can just cause you to ache all over.
Remember when you and energy ran around together and had fun?
I took energy from you, and gave you exhaustion. Try to have fun now.
I can take good sleep from you and in its place, give you brain fog and lack of concentration.
I can make you want to sleep 24/7, and I can also cause insomnia.
I can make you tremble internally or make you feel cold or hot when everyone else feels normal.
I can cause one limb to change color, look bruised, feel super sensitive randomly for seemingly no reason.
I can also give you swollen hands and feet, swollen face and eyelids, swollen everything.
OH, and just because I started off in one part of your body, don’t think I can’t travel and effect other limbs or any other part of your body I so choose to torment. I can, and likely I will.
I can make you feel very anxious with panic attacks or very depressed. I can also cause other mental health problems. You know crazy mood swings? That’s me. Crying for no reason? Angry for no reason? That’s probably me too. It is hard to not feel hopeless when you have me beating your body up constantly.
I can make you scream out loud, anytime of day or night, anywhere you are because I can create pain that makes you sure someone just stabbed you with a knife. Making you look crazy is fun for me.
I can make your hair fall out, your nails become dry and brittle, cause acne, cause dry skin, the sky’s the limit with me.
I can make you gain weight and no matter what you eat or how much you exercise, I can keep that weight on you. I can also make you lose weight. I don’t discriminate.
Some of my other inflammatory disease friends often join me, giving you even more to deal with.
If you have something planned, or are looking forward to a great day, I can take that away from you. You didn’t ask for me. I chose you for various reasons: That sports injury, needle stick,, or that car accident, or maybe it was the surgery to correct a bone problem.. Whatever the cause, I’m here to stay.
I hear you’re going to see a doctor to try and get rid of me. That makes me laugh. Just try. You will have to go to many, many doctors until you find one who can even try to help you effectively. Most of them will make you feel like you are to blame, or worse, it is all in your head. I’ll convince them that you are crazy because normal people know that you can’t have all those symptoms all over your body and still walk around looking normal.
You will be put on the wrong medication for you, pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given anti-anxiety pills and antidepressants.
There are so many other ways I can make you sick and miserable, the list is endless – If your body is all of a sudden dealing with things that were never issues before…yep…. that’s probably me.
Shortness of breath or “air hunger?” Yep, probably me.
Bone density problems?
Can’t regulate body temp and poor circulation?
Constant ‘electric jolts’? Yep, probably me.
I told you the list was endless.
You may be given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away.
You’ll be told to think positively, you’ll be poked, prodded, and MOST OF ALL, not taken seriously when you try to explain to the endless number of doctors you’ve seen, just how debilitating I am and how ill and exhausted you really feel. In all probability you will get a referral from these ‘understanding’ (clueless) doctors, to see a psychiatrist.
I will make you question your own sanity at times. I will make you contemplate unthinkable scenarios.
Your family, friends and co-workers will all listen to you until they just get tired of hearing about how I make you feel, and just how debilitating I can be.
Even after explaining to those you interact with regularly that I’m the most painful disease known to man, and there is no cure, they will say things like “I hope you have a speedy recovery”. Those who don’t know me well have no idea how cruel and unusual my punishment can be.
Some of them will say things like “Oh, you are just having a bad day” or “Well, remember, you can’t do the things you use to do 20 YEARS ago”, not hearing that you said 20 DAYS ago.
They’ll also say things like, “if you just get up and move, get outside and do things, you’ll feel better.” They won’t understand that I take away the ‘gas’ that powers your body and mind to ENABLE you to do those things.
Some will start talking behind your back, they’ll call you a hypochondriac, while you slowly feel that you are losing your dignity trying to make them understand, especially if you are in the middle of a conversation with a “normal” person, and can’t remember what you were going to say next. You’ll be told things like, “Oh, my sister had that, and she’s fine on her medication” when you desperately want to explain that I don’t impose myself upon everyone in the exact same way, and just because that sister is fine on the medication SHE’S taking, doesn’t mean it will work for you.
They will not understand that having this disease impacts your body from the top of your head to the tip of your toes, and that every cell and every body system and organ can be effected.
The only place you will get the kind of support and understanding in dealing with me is with other people that have me. They are really the only ones who can truly understand. #CRPS–
I have never asked for help like this before and not sure what to say. please keep us in your thoughts and prayers, and if you are able to any little bit of money would be gratefully appritiated. For more on this disease you can visit RSD.org. This condition is considered rare and understudied for the most part but they’re many of us out there. If you would like to know more please feel free to email me.
Thank you very much for taking the time to read this.