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My Care Fund

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I am a longtime advocate for people with disabilities and chronic disease, have also done advocacy for animals and have been a jewelry artist for over 30 years.

If you'd like to get to know who I am please watch the attached Video; My Mom Needs A Miracle; Call To Action, told by my rescue dog, Carmella who was ill herself when I adopted her from a local animal shelter. This video was originally made for a contest to win a free vial of full extract Cannabis oil through one of the online advocacy groups, but I thought it fitting to add it here so that those who don't know me can see who I am on the inside; know my heart.

12 years ago I was stricken with the acute onset of Sarcoidosis and went on an off-label protocol for that which helped me tremendously. After 2 years I could no longer afford the drug that was improving and stabilizing my health, so I had to go off of it. I tried as best as I could to control it with a healthy diet and had to reduce my activity level to keep my symptoms of pain and fatigue under control to a manageable level (or so I thought). I also have Fibromyalgia.

Then last January 2015 I realized something wasn't right, as I felt much more fatigued than usual, so I asked my doctor for a physical therapy referral, at first thinking maybe I was just deconditioned and that maybe some light exercise might give me back some stamina, but not only did that not help but made it worse. My doctor recommended I have a sleep study thinking that maybe I was getting run down by not getting quality sleep. I honestly thought t would come out negative, but was shocked to find that not only was this not merely garden variety sleep apnea, but that I had Biot's Respiration (similar to Cheynes-Stokes), a symptom indicative of an underlying condition usually of "central origin" (Central Nervous System).  I also noticed that I was jerking alot just as I was falling off to sleep and this continued to get worse over the following months. A
C-Pap titration threw me into severe respiratory crisis for several weeks, and made the breathing pattern worse, so that was not an option, and I had to be put on nighttime oxygen. So far this has stabilized my shortness of breath while awake and the oxygen desaturation, but the Biot's breathing remains.

My productivity went downhill, and in August I had several falls, the fatigue continued to worsen, and I began having muscle stiffness, fasciculations in the feet and toes, and my body became increasingly hypereflexive. It began to feel as if my muscles were overworked and this spread to both legs, then to other parts of my body as well. At this point it has become so exhausting I am not able to do very much and I feel systemically unwell, like having the flu all the time. I was hospitalized for 11 days in which it was discovered that I have autonomic instability.

As of yet we don't know what the underlying condition is causing all of this, but I am now severely disabled to the point that I need help at home, and I cannot meet my expenses, as I have not been able to develop my jewelry business to make enough money to pay for everything I need. Bills have piled up and I am at a severe deficit now. I live alone and currently have home healthcare but that is only covered in the short-term and doesn't provide all the help I need, only providing bits and pieces of care a few times a week, usually no more than a half-hour at the most at any given visit. 

I need to have a way to pay off my bills and pay my current expenses. I finally got approved through a Medicaid waiver for a personal assistant to help out around the house, help with activities of daily living, go with me to any doctors appointments,  but she does not have skilled nursing skills and I am going to need Saline infusion at home as well as possibly other nursing care as time goes on. I would like to get whatever medical treatment I need at home with a doctor's order since even leaving the house is absolutely exhausting and makes me feel even more unwell. Sitting up in a chair for more than a few minutes is agonizing.

I don't like asking for money, but at this point I don't know what else to do. I'm pretty much out of options, and this illness has really put a strain on me and on my finances.

Since I cannot tolerate much exercise the only thing that is tolerable is being in a weightless environment, so if I were able to have access and help to get to use a pool regularly I would like to do that. Right now I can neither afford the transportation nor fees to join such a place.

There are also some devices and other products my insurance won't cover and may not be available through non-profit organizations that are another added cost.

This situation has turned my world upside down and I have also recently fallen victim to abuse in the ER due to the fact that I have no local friends or family with me when I go to receive medical care. Although I now have a personal assistant to help with household activities I am finding that there are many expenses that my health insurance does not cover, and on a low income of less than $800/month I am finding myself falling behind on my monthly bills.

Having this type of chronic illness is proving to be rife with hidden costs I did not anticipate.

In July I have two appontments out of town with experts. I cannot get comparative care here in Atlanta, so must go to Florida and Cleveland Clinic so that my testing and treatment can move forward effectively and get to the bottom of why I am ill. For this immediate goal I need to bring in $500 so that I can afford to stay in a hotel when I go to Cleveland Clinic for 4 days and possibly a 1 night stay for the Florida trip.

I also have another condition that I've had since childhood that I'm seeking evaluation for but am running into barriers in locating somebody qualified who also accepts my insurance, so it is highly likely that I may not be able to get it unless I pay out of pocket. This evaluation could run $1,000 - $2,500 and if I have to go out of town for it the cost of staying in a hotel will cost about $500. Evaluation takes several days of intensive testing.

My not being able to confirm or explain this additional condition to my doctors is complicating my diagnostic process for the other condition, so it's a barrier which must be removed. If I remain unable to find a qualified specialist to accept my insurance it may make the medical care for my other condition inaccessible.

I have no family helping out so therefore raising this money for financial help is going to be absolutely crucial.

You can be assured that your donotions will be put to good use. When one is ill for a long time and can't make a living wage it causes an avalanche if ramifications to one's finances and everything is adversely affected. Having to rob Peter to Pay Paul  becomes a fact of life and invariably some bill (or bills) suffers each month until one is able to bring in enough to clear up the initial deficit. Once that hurdle is overcome it will make monthly expenses easier to meet.

If you would prefer to purchase something you  can use rather than just making a donation I have two shops on Etsy you can purchase useful items from.

For handcrafted jewelry;

For crafting supplies; 

Please consider purchasing something for yourself or as a gift for someone in your life.

I need to have some money coming in as soon as possible. Just knowing that this logistical stuff will be taken care of will take a huge load off of me so that I can focus on getting the medical care I need and have the best quality of life possible.

As much as I wish this weren't happening, I find myself having to deal with circumstances beyond my control that are very scary and having to put a support system together from scratch. Many of the social service programs that would otherwise help with these kinds of needs have had huge budget cuts and are on freeze or are backed up with several years' waiting lists and those that still exist are very limited.

Thank you for whatever you can afford, every little bit helps. I am having a hard time dealing with all the changes I need to make in my life and it is overwhelming, in addition to trying to heal from the trauma of what recently happened to me in a local ER. I really need to know that there are kind people out there who genuinely want to help and won't resent it and won't take advantage of my weakened condition. I don't want to be a burden to anyone, and I hope that readers will understand my plight.

I am determined to stay in my home and live out my life in peace and with dignity. In a nutshell this is what these funds would mean to me.


Pippit Carlington
Stone Mountain, GA

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