URGENT RAISING $ for RSD/CRPS Warrior's FAMILY
My Family DESPERATELY NEEDS FINANCIAL HELP due to years of treatment for RSD/CRPS or the ( “SUICIDE DISEASE “) my rare disease (only 200,000 per year are diagnosed - I believe that is because unless you are familiar with the disease, it is often treated as some other Chronic Pain disease) has and still is causing severe financial hardship for my family and is causing me years of chronic excruciatingly debilitating pain with many more years to "look forward" to. I have had 7 surgeries 3 last year, to help my deformed toes. I am learning various coping mechanisms to get through the day, but chronic pain is always there. A good day for me is with a pain level of 4-6 which may feel like a 7-8 to someone else with RSD/CRPS I have learned how to 'manage" my pain. However, my pain may change hourly, and I am unable to predict how I will feel each day. I may look "healthy," but I often suffer unbearable, unrelenting, and burning nerve pain. My skin constantly swells and I constantly sweat, even on the coldest day, its so bad that the front of my hair is wet, it trickles down my forehead over my eyes. My skin constantly changes colors on both feet and can go from burning to absolutely freezing in a matter of minutes. Often I am unable to walk and have to use a wheelchair or a cane. During those times I fall often causing bruising and wounds that have required stitches. many time I am so tired I can fall asleep standing up. I very rarely go out as I hate to wear anything on my lower legs and feet. I still need additional surgeries as both big toes are now deformed. If my toes dont stay straight, my next option for toes 2-5 on both feet will include the amputation of some or all of my toes. Even that won't stop the pain as it then would be known as Phantom Limb Pain. The only thing amputation would help is the "comfortable" but still painful wearing of shoes. The McGill pain scale rates the pain of people with CRPS higher than that of people with cancer. It is now spreading into my right-hand and arm, causing severe swelling and excruciating burning pain which means more treatment, more medical expenses and more past due household expenses, the possibility of being kicked out of our home, repossession of cars, Electricity cut off, no water or internet.
My children do not deserve the continuous worry of having no where to live no food on the table, unable to pay our bills. It not their fault I developed this disease and all because 9 years ago I tripped over my Kitten and fell down the stairs injuring my right ankle. I saw an orthopedic specialist for 5 months. Since I was uninsured at the time he saw me for maybe 3 min. Had no idea why my foot was so swollen and getting worse. It was the worst burning stabbing pain you could ever imagine. I went to see a podiatrist who had treated me for a broken foot. As soon as he saw it he said it was RSD neither my husband or I had ever heard about it. He sent me for a bone scan which confirmed his diagnosis. By now in addition to the swelling my toes looked like talons getting ready to swoop up its prey. I was referred to a pain specialist, thankfully I now had insurance as my husband was again employed. When I saw pain specialist he scheduled me for sympathetic nerve blocks, (the injury causes the sympathetic nervous system and the immune system to malfunction-the nerves throughout the body misfire, overwhelming the brain with pain signals). After 3 nerve blocks, my pain was unbearable. My foot constantly felt like I was walking across hot burning coals or someone had taken a blow torch to my foot (not that I had ever had a blow torch to my foot) My ankle and foot went from freezing to burning. I could not move my toes. I could not wear anything on that foot even the bed sheet felt like a 1000lbs of sandpaper. Then came the worse I developed RSD/CRPS in my left foot. In a matter of a month, my toes on my left foot developed dystonia (muscle contractions resulting in abnormal positions). Now both feet had disfigured toes. My toenails got so hard and thick and discolored I could not trim them. I barely went out, other than my dr appt. I constantly questioned God why was this happening to me? what had I done to deserve this? I went to church, when I could, bible study when I could, fortunately, it was near where I lived. My pain doctor tried different painkillers, opioids Percocet, nothing took away the pain. I lived pain, slept Pain, ate pain I was consumed with never-ending excruciating burning or stabbing pain. I wanted to lay down and die so I could escape the painful hell I was living.
The next step was 10 days of ketamine infusions. Even with ketamine, I couldn’t escape the pain. Eventually, after almost 3 years of treatment, and 3 operations on my toes to straighten them I was offered an Intrathecal pain pump, (looks like a hockey puck) inserted just under my left hip. I jumped at the chance and did the trial. I thanked God that it seemed to help. I was in an even deeper depression than before. The meds in my pump would work for a while, then I would get used to it and build up a tolerance, then the pain would flare up again, and again, and again. By now I was living in my at own painful hell. My parents hated to call as it would upset them to hear me in pain. My friends drifted away, they could not stand hearing me complaining constantly about the pain. One day while I was laying down I started hearing a voice in my head, telling me it was time to get a grip and start being a mom again to my twin girls and son. A wife to my husband, housekeeper to my family and daughter. After hearing the same voice in my head for almost a week I got the message. I believe it was God talking to me, he reminded me that His Son was beaten and tortured, then crucified and stabbed as a "HUMAN" for our sins. I should stop feeling sorry for myself. After that day when I had finally taken notice of the voice, I stopped complaining, started to focus on my children, going to the girls' (Twins) Field Hockey and Lacrosse games, cooking and baking etc., there was still a lot I could not do, I tried hard not to cry out if my foot was banged, or I was pushed. I then got to try a breakthrough medicine derived from the cone snail called Prialt. My pain level went as low as a 4, it was too good to be true, there had to be a downside and there it was in the form of intermittent memory loss to the point where I ended up somewhere in Maryland and did not know how I got there or how to get home. I was weaned off Prialt. I then broke the titanium pin in my big toe, my podiatrist was amazed that the pull on my toes was so strong it snapped the pin in two. I had to have that removed. I was scheduled for more surgery, my podiatrist was running out of options of what he should attempt to straighten my toes. I would be excited that surgery was almost here to get it canceled due to nasty flare-ups a day or two before the surgery. My husband then lost his job as he was taken more and more time off to take me to Dr appointments, treatments, pump refills, surgeries, nerve blocks. He lost his job as he had to use the company truck to get to work as I needed the car so my son could take me to my appointments. We lost our medical insurance. Our medical bills were piling up before even with the insurance, now I had none. He was unable to collect unemployment. I was not allowed to work. The only assistance we got was $185 a month in food stamps for a family of 5. My children and husband were eligible for Medicaid. I, on the other hand, is a permanent resident and I had to prove the year I became a legal alien before I was able to get Medicaid. We were struggling while my husband was working, but now we were sinking the bills were mounting up, we lived on my disability, which barely covered the rent. We got behind on everything. Our cars, one was almost repossessed we were three months behind on both vehicles, our mobile was shut off every other month or so. We had the electric, water, internet and tv turned off. We canceled what we could. ng before due to all the medical bills. A few times we begged our church to help us which they were kind enough to do. During the past two years I became paralyzed, I thought I had a stroke my legs were too heavy and hard to move. Christiana refused to give me an MRI because of the pump. I ended up at Penn. After months of testing and MRIs it turned out that I was having a reaction to another medicine in my pump. That was decreased and another med was added. More hospital bills, unfortunately, my legs did not fully recover and I am still using a cane to walk. Falling was a common thing. And so was being tired, I was so tired I would sleep standing up in the kitchen then wake up as I was falling to the floor, I fell so many times that it did not bother me too much, the downside was I could not get up on my own. That was in 2017. The bills kept accruing. I could not afford to go see my mother who is in England, is 87 and has mid-stage dementia. During all those years of suffering excruciating pain, going to the ER and the doctors did not know what RSD was, they would look at me like I was some kind of pain pill junky despite the abnormal swelling and the pain which was dramatically disproportionate to the injury. I needed more surgery, the 1st in 2018 was in March, the 3rd was December 21. In June of 2018, I started to hear the voice again. This time it kept saying to start up a support group. There were no support groups within a 100 miles in either direction, New Jersey, Pennsylvania or Maryland. Could I do it? I asked my pain doctor about facilitating a Support Group. He thought it was a fantastic idea. So I contacted RSDSA who are based in Connecticut. I registered with them. And so Door Of Hope, an RSD/CRPS Support Group for the State of Delaware and Tri-State Area was born. Last year (2018) I had 3 more surgeries on my toes dr was now taking some of the bone in an attempt to keep my toes straight. I consider my rare disease as a gift. I now know why I have it, and that is to help others just like me who feel desperate and alone.
"My mission is to provide support, education and hope to all those affected by RSD/CRPS and to increase awareness to the medical community that the pain of RSD/CRPS is like nothing an individual can experience throughout their life. Everyone's pain is different no one feels the pain of another. However, in this instance, RSD/CRPS, RSD/CRPS pain is different but the same. None of us know how much pain another can bare and only through talking about it to others (in different stages of the disease) will give others hope that they can eventually get to a point where the disease is "manageable" and help each other to realize that they are not alone.
The Support Group is scheduled the last Tuesday of the Month. My first meeting was in July. I got one new member who came with her grandmothers and mom. They looked like the end of the world had come, the young girl terrified. When they walked out of the meeting they walked out understanding that the pain the young girl was feeling was real, every symptom, the sweating, burning, stabbing excruciating and unbelievable disabling pain is real.
My Support group may only have a few members, but the feeling that I have from helping other sufferers and turn them into " CRPS warriors" is worth every second, minute, hour, day, week, month and years I have suffered. It is a Gift to help others who have this rare and chronically painful disabling disease. Presently, we at Door of Hope is working with RSDSA's benefit "Coins for Courageous Kids Camp" sending 56 children and their families to experience a fully handicap accessible camp in KY.
My husband still has no job despite all the resumes he has sent out. I believe his age has a lot to do with it.
22 years ago we had everything a brand new semi-customed home, with a pool we had built with an inlaw suite for my inlaws. Our son was 3. Things were finally looking up. 5 years later I was pregnant with twin girls. I had to go on bed rest and was unable to go back to work. My long term disability ran out. I had to take one of the girls to A.I duPont Hospital 3 - 4 times/wk because one of the girls had torticollis and also had to wear a special helmet because her head was starting to get out of shape. Bills were mounting up. After my inlaws died we had to sell the home to pay nursing home costs. We moved to where we are now.
Every time we think we are moving ahead some big expense always happens, so we have to rob Peter to pay Paul. We are behind in house payments and thank God that he is a decent man who is willing to work with us. We are so behind in everything again. Medical bill collectors are always calling and sending us collection letters, in June my 12 yr old beagle died of liver cancer. Then in September, our 10 yr old cat died from a massive stroke. We owe the vet over $600 and still have not picked up our cat's ashes as I have no money to pay them. We had a car accident last year and have the insurance money to get it fixed, however we dont have the $500 deductable. At Christmas, my disability and my husband's ss (he started to collect in Feb 2018) were $440 short. Medicaid stopped paying for our Medicare Part B in September, so they deducted October and November's payments plus we had to pay December in advance from the December 3, direct deposit for both were less $880, money we were going to use for Christmas. Now I don't have the money to pay the electric, auto insurance, car loans. We owe 3 months on our vehicles. The one auto lender calls us every week and we only owe approx $1500 on the vehicle. Since he could not find a job and after trying for over a year and a half. His degree is in Marine Transportation and got accepted in the Merchant Marines he then was diagnosed with cancer at 24 and had to come out because he needed over 2 years of chemo. Unfortunately, he was not accepted back in so he had to change his dream. and career. A few years ago he joined the Coast Guard Auxilliary this is something he loves to do, so since jobs were hard to come by at 66 decided to take his 100 Ton Captain's License, it cost well over $650 so he waited till we had the money. We never had the money and without a job, we never would but he went for it. He passed it with a perfect score. We had to pay another $160 for a complete physical, eye test, drug test. Because of the $880 less in December, I borrowed money from my dad so he could apply for his captain's license, $149 plus we could buy a few Christmas Presents. He has been offered a job with a marine towing company, however, he needs his license. It NEVER Fails, I don't know what we have done to deserve all these setbacks, but there is always something that gets in the way. This time the government is shut down, Homeland Security is shut down and cannot issue his captain's license, all because of a stupid $5 billion wall. So much money that could help people who have no homes, no jobs, no food etc. and who need medical insurance. I owe approx $24,000 in medical bills, and that does not include about $4000 in old credit card collections that we were advised not to pay as most of them are old (3 - 10 years) plus we owe the IRS and state taxes of approx $7,000 each. I have to redo our 2016 to show that a $56,000 payment I received back in 2013 from ssdi was paid back to UNUM the long distance carrier was already pre-taxed money. or something like that. In addition, I still owe UNUM almost $16,000 in wages that they paid me. So instead of making up the difference of $440.00 as Social Security awarded me $400 a month less than what UNUM had been paying, they were using it to apply to the money I still owed them. Kind of unfair don't you think.
I am always doing thing for others, especially those with the same disease as me. This time I want to help my family. My girls have always done without, which is hard when they see what their friends got for Christmas and never complain. Neither does my son. The Girls graduate in June I don't know how I will afford a graduation party for them. I pray to God for help each day and GoFundMe is what keeps going through my mind. My son goes to Wilmington University. My husband does nothing but yells at each of us. I keep promising my mom that I will come and see her and pray she won't die before I can. My father is also not well and is 79 I still owe him $600 and was supposed to start paying this month, but here I am, struggling again trying to play catch up. PLEASE HELP me and my family get out from under this weight of debt. Help me to see my mum, If not for me, but for my family. For years I have been the one who worries, juggles and calls to make arrangements to pay the bills. It's only the 13th of the month and I do not have enough to pay the car insurance and the electric, so I am begging for a little help, I don't think I could go thru another like the last 10 years. It does not have to be much, however, every little bit would help my family.