My Care Fund
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 This video was originally made for a contest to win a free vial of full extract Cannabis oil through one of the online advocacy groups, but I thought it fitting to add it here so that those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.
I still deal with Dysautonomia and there are no specialty clinics in the state of Georgia, so I still need to go out of state before doctors here will feel comfortable treating it.
Meanwhile I try to stay as hydrated as possible and eat salty snacks to metabolize the fluid more easily. I often wake up several times a night unbearably thirsty with just a few hours having been asleep without ice water.
Over the past 8 or 9 months I have had what seemed at first like allergy symptoms. I have never had any allergies and these did not seem to have any identifiable trigger, so was referred to an immunologist for further investigation.
I now see the only specialist in Mast Cell Activation Disorder in the state. He has seen me break out in a rash on my neck and under my jaw without provocation and over the past 2 months have had to call in because of several episodes of anaphalaxis. After observing the course of my condition and looking at the cluster of other conditions I have he feels that this is a big part of my problem. During my last appointment he told me that Mast Cell Activation Disorder can be a root cause of Dysautonomia or vice versa. I am now on several antihistamines and have had to have the dosage increased on my main one as the last two episodes of anaphalaxis got dangerously close to landing me back in the ER because of difficulty breathing and rapid heartbeat, one of which triggered a near fainting spell.
With nobody treating the Dysautonomia we are left with treating these two newly diagnosed conditions in hopes that the Dysautonomia may be secondary to this Mast Cell condition or the Inflammatory Arthritis.
Winter has always brought an increase in the frequency of near fainting episodes and things have been touch and go. My severe fatigue continues to be a major problem and interferes with my getting out. Even going to the doctor exhausts me.
While waiting for all my conditions to be addressed medically I'm also working on some things at home to improve the quality of my food and to save on groceries. Food prices continue to go up but my income isn't keeping up. I'm trying to set up hydroponics in my livingroom, but no matter how you slice it the start-up costs are expensive. I have put off buying a pump for almost a year, trying to use the Kratke method of growing in water and for some plants, what they call "semi-hydroponics" meaning I put them in containers with clay balls and use liquid nutrient solution by top-watering and bottom- watering, letting it drain through into a pan below. Others I'm growing in soil. Need to get those converted as soon as I can get them into hydroponic systems as I've been hit over the Winter with fungus gnats which killed most of the 3 varieties of pepper plants I had growing.
The larvae bore into the root system and kill them making the uptake of water and nutrient impossible. Need to buy something to kill the adult and larval stage gnats.
This week several local grocery stores were out of fruits and vegetable (the most important foods for people who are chronically ill). My assistant was finally able to find strawberries and Pineapple at one store after some searching. This has been happening more and more. Sometimes the stores nearby run out of something and no more is shipped to them from a supplier indefinitely. All the more reason why I want to grow as much of my own fresh produce as possible.
I also harvest my own sprouts to eat in salads. Those are pretty easy and do not require all the bells and whistles the other edible plants need, but they do involve some expense. I buy seed mostly by the pound from the supplier with the least expensive prices I can find (which are healthy and non-GMO).
In order to really do this effectively and make the most use of space and energy I need a large flood and drain system like this one by Viagrow; https://www.ebay.com/itm/Viagrow-4-ft-x-4-ft-Ebb-and-Flow-Hydroponics-System/323001752070?hash=item4b34679a06:g:xxcAAOSwuHdaW-bP but right now don't have the money. I also need to get a grow tent and am currently using an old art festival canopy in the meantime. People who come in and out keep bumping their heads on it because it takes up the entire 10 foot room. I probably need something more like 7 X 7 foot and fully enclosed.
I have enough plant nutrient to keep me going for awhile more but equipment and incidentals I'm lacking for the set-up probably total around $2,000. I've been trying to buy things bit by bit and not having a proper pump for aeration slows down growth and delays harvestable food alot, not to mention loss to pests and plant diseases that take out some of my crop. Without financial help I am faced with having to try to phase in several smaller less expensive pumps which in the long-term will be less efficient and less energy saving on my electric bill.
Fresh fruits and vegetables that are home grown are more nutrient rich and bioavailable than those grown commercially.
Currently I'm also looking into obtaining some natural powdered fruit I can use in smoothies in combination with fresh fruit. The lemon tree seedlings I stared from grocery store lemon seeds are going to take awhile beforer they bear fruit. I hope to produce some faster maturing vegetables that I can eat this month or next if I can get some aeration into some of these pots.
My rescheduled appointment with the Movement Disorder specialist at University of Florida was supposed to be on January 4th at 9 AM. I had given the new GP plenty of notice because although the appointment was already set and I was accepted for an appointment by the clinic I needed the doctor to fill out a form so that a non-profit organization could cover my travel expenses.
I estimate the cost of such a trip; airfaire, hotel, and food is likely going to be around $900, especially this close to the date of travel, and I simply don't have it. This is more than my entire disability income for the month, and I'm barely making it as it is.
I had tried numerous times over the past month and a half to find out whether the application for the non-profit organization has been filled out, but was having trouble getting a response.
Then only after calling the Office Manager of the practice where my new doctor works I got a call finally from the Practice Manager (just a few days before Christmas) informing me that Piedmont had some sort of policy against a doctor following through with a referral that she did not start. The referral itself had already been established.
All I needed was for her to fill out the form so that the means would be there for me to get there and back, but she and her employer got together and (according to the Office Manager whom I called after receiving the news from the Practice Manager) the doctor didn't "feel comfortable" filling out the form, and the employer gave her the out by pulling up some technicality in policy.
Although she'd given the referral to Vanderbilt and that is being reviewed right now (I'm waiting for the word as to whether I'm accepted there), that referral will also require that the non-profit form be filled out by a doctor. They will not allow the patient to fill it out themself, it can't be a nurse, etc... It HAS to be a DOCTOR.
So the upshot is, this doctor's refusal to fill out the form for my travel to be covered financially is going to sabotage both referrals.
So now the only way is for me to raise money somehow, as I've run out of other options.
It's too short notice for me to make it to the Jan. 4th appointment, but I will have to reschedule (for the 2nd time now), and the wait is most likely another 6 months.
This is devastating because every time I miss one of these appointments it sets me back and allows this disease to progress further. I hope that by the time I get the care I need that too much damage hasn't happened. Early intervention in these chronic illnesses is key to a good or even fair prognosis.
Needless to say; I cannot stay with this Primary Care doctor. She knew when I first came that I was way below the poverty level, and that I had been left high and dry from the previous facility, yet let me fall through the cracks once again (and with basically no notice). She's placed me in a real catch 22 situation. She won't treat the Dysautonomia herself without very specific documentation from one of these specialists, yet she is unwilling to do what's required in order so that I can see these experts.
Clearly this is unworkable. Trying to navigate past one sticking point after another at every turn is really taking a toll on me and there may come a time at which I can no longer advocate for myself, and then what??? Having a doctor/practice who is looking for ways out of doing these necessary tasks is not in my best interest.
I will have to change doctors once again or this could go on until I die.
My doctors (whomever I end up with) have to understand that my low income and disability is part of the package and comes with certain special needs, and as I get older I will be less and less able to stay on these people to make sure they follow through with these kinds of things. It is already becoming too much for me now. I have no family stepping in to help make sure the doctors do their jobs and provide the care I need. All that falls on me, and it's getting to the point that me, myself, and I just isn't enough. I'm running out of steam.
I have severe fatigue as it is and when I get fatigued I also get brain-fogged and although I try my best I cannot juggle a ton of things day in and day out, so the people in my life absolutely have to be reliable, and I'm finding out that I have no safety net.
I hope someone is reading this. Right now I feel as though I am totally alone, like a sitting duck.
I'm running a special in my Etsy shop;
Spend $150 or more and receive FREE Shipping to your US destination! Just enter coupon code GRANDGIFTFREESHIP2US at checkout.
This is good on anything in my shop which adds up to the required minimum, and it goes through December 31, 2016.
It can be used as many times as you'd like during this month, and feel free to send the code to friends.
I realize that it's too late for you to receive it in time for Christmas, but maybe you can put some of your Christmas money towards something you pick out that you want. Sometimes a husband or wife might rather pick out their Christmas gift than to be surprised with something that might not be their taste.
I don't need these things and they really should be worn and enjoyed; not sitting in a bag.
What I need and want for Christmas is;
* real medical back-up; doctors whom I can really trust to fully support me whatever comes, no matter how bad my condition gets. Doctors who do not subvert and deceive, but truly respect me as a partner in the process and respect that it's my body.
* I need to be safe when I may have to go to the ER any time in the future and not have to fear a repeat performance of what happened to me on Dec. 3, 2015 because of defamatory verbiage in my medical records from that time.
* I need to know that my treating professionals can be relied upon to do what it takes so that I can obtain what I need to manage my diseases optimally with what science has to offer.
* not have to worry about this stuff so that I can concentrate on creating.
(I'm exploring jewelry-making techniques that might be easier on my hands). Declining fine motor skills have made continuing to create metalwork pretty much impossible and I'm looking for techniques that I can still do and make a new line of jewelry with. I'm learning all I can in hopes I can bring in a broader market.
* I would like the defamatory material removed from the medical record, and legal backup, as none of the administrative procedures have dictated that the healthcare corporation remove it, and to date no justice has been served; not regarding the physical abuse I was subjected to, the psychological abuse, nor the institutional bullying and sabotage by the corporation as an entity that ensued in the months to follow.
* I want real hope.
These are the things I'd like for Christmas.
The level of detachment in the community right now is staggering. I don't know what it is, but the country as a whole seems to have become desensitized to human suffering and that's scary when you consider that all of us will one day get some condition that we can't just bounce back from (and further, kills us).
It's not death I fear, but the prolonging of suffering with no end in sight.
I'm trying to keep my Etsy shop alive despite all my best efforts the financial burden continues to mount, as there are not alot of buyers nowadays, and I've become less able to compensate when my body doesn't work.
Sometimes things in the house (necessary things) run out and I find that there isn't enough money to replace them. I broke two big bowls the other day struggling to put a paper towel roll in a cheap plastic holder and my elbow bumped the two bowls onto the floor and they broke into a bunch of pieces; another item I can't afford to just go out and buy to replace. All my dishes have to be out on the counter so that I can reach them when I have nobody here to help me. I find that I've become alot more clumsy even in my wheelchair and my assistant has noticed it too.
The fine motor problems in my hands have increased and although I have been attempting to work around it by learning some new jewelry-making techniques that I hope to incorporate into my work this has not increased my income. I enjoy it but am finding that when I go to try these techniques my hands don't cooperate and they take way longer than they should to complete.
It's this drag on my muscles that feels as though there's a delay and lag which happens from the time I physically reach to pick something up and move it around in my hand to complete a task. It's a combination of weakness and heaviness that has become more constant lately which is the hardest thing to deal with, and knowing there are bills piling up and my body simply cannot do it no matter how hard I try.
This motor slowing causes me to make typos which take longer to edit everytime I type, and handwriting is like being in quicksand! Sometimes I can't do it at all and other times it comes out on paper but sloppily and with great effort.
In addition to the other services and things I need, it is becoming crucial that I obtain an attorney to have the libel in my medical record removed by court order, as this is a constant barrier in my seeking good medical professionals who can get to the bottom of my disease(s) and advise my local doctors to they can start necessary treatment here at home. There aren't many willing to take on a huge, corrupt corporation on contingency or pro bono. It may require a fee of several thousand dollars to obtain one who will follow this through to completion. It seems now with no real enforcement from regulatory agencies who are supposed to protect patients that this is my only option.
I finally got the referral to Vanderbilt's Autonomic Clinic (this will replace my appointment at Cleveland Clinic that Emory had sabotaged), but they still want records from Emory. Each time I see a new doctor they want those records because I had been at Emory for a long time and that's where most of my records are. It may be awhile before I can leave them behind and in the meantime there is still the risk that doctors who don't know me yet could be negatively biased as a result of the defamatory material written in them.
This could very possibly seal my fate if the false and unprofessional entries are not removed.
I think I may have found a good female neurologist but she's 54 miles away and it remains to be seen as to whether I can get there with my medical transportation service. In addition, she's booked solid until March.
As I get more and more ill over time even taking short trips out with somebody to help is becoming too difficult and taxing, and I recently found out that I will need to renew my state ID. The requirements have become huge hurdles for the poor, elderly, and disabled, as they require having more proof of birth and citizenship than ever before, and the fee is an additional $32 - $38 (which means this is going to have to be taken from another bill or from my food budget. I will have to go there in person; another expense and that little bit of exertion will make me sicker.
On January 4th is the rescheduled movement disorder clinic appointment in Florida. It took 6 months to get, and I'm just hoping that the same non-profit I was asking last time to cover travel expenses can/will. I'm sure they get lots of requests from patients in my situation, so there's no guarantee my application will be accepted and the expenses approved.
The process is that new GP I'm seeing will have to fill out a form online, and get in touch with an "out-of-town coordinator", and as she has never done this before I won't know if it's a done deal until her nurse tells me it's been completed. I really don't want to have to reschedule it again, especially with the motor problems having become worse.
Coming up with Christmas presents is going to be a real challenge this year, and although my long illness has left me mostly alone, (the rats have all left the ship) I do have a few people on my list I want to give gifts to. I have some ideas from new techniques I've watched in video tutorials with which to make gifts, but since I really can't rely on my body anymore I don't know for sure that I can complete these projects, and that makes me uneasy.
I signed up for a Christmas card exchange in one of the Etsy teams (I may have over-extended myself as I need to send out 12 cards in all), but do not have commercial cards and no money to buy them, so that leaves making them, and as I said my ability to execute hand-made projects is shaky at best!
Each month now I am faced with the decision "Which bill will I NOT pay this month? Do I want to pay my natural gas bill or my electric bill? Food for the month, or do I pay AT&T?
Disability amount is going up $2.00 next month, while food alone has gone up way more than that! I had hoped it would hit $800/Month, but no such luck.
It's becoming clear that I am going to need more help than what is covered on Medicaid, and soon.
If I get approved for Saline infusion once I come back from Vanderbilt the agency I have my assistant through has skilled nursing services, but I will have to get on a more comprehensive Medicaid waiver than the one I'm on that covers that and other medical needs. Even so, that waiver is backlogged a year, and in the meantime I'd probably have to go to an infusion center and/or get short-term services from Home Healthcare.
Still haven't found anyone to take my insurance who does AS evaluations on adult women. To pay out of pocket for that is around $2500; which I don't have.
Watching the craft videos is keeping my spirits up, but I need a miracle for sure!
If everyone who reads this were to contribute something and those donations started coming in more regularly I think I could reach my goal. It's requiring more than I have just to survive.
Please share this around, and I thank you in advance for whatever help you can provide.
Happy Holidays! Wishing you health, happiness, and prosperity. :-)
Administration moved in before my travel related paperwork had been completed by both neurologists and forbid both to continue seeing me, and ultimarely sabotaged my trips.
The attached video is a recording from my answering machine documenting;
1) A call from Emory conforming my doctor's appointment with a neurologist in Sleep Medicine.
2) A call from "Patient Relations" stating I'd been "globally terminated"
3) A call from Georgia Medicaid from a woman who had been trying to facilitate my travel-related expenses being covered by a local non-profit, stating that she never received the form that my other neurologist had been working on and could not move forward without that completed.
Administration was well aware of my itinerary because I had to give that information to the neurologist in Sleep Medicine so she could fill out my oxygen form for the airline, and my other neurologist so that she and her nurse could complete and submit the form to the non-profit organization who'd have covered my travel expenses.
The taped phone messages document that Emory's top brass never gave them time to complete the process so that I could make it to those independent evaluations and confirmed what I thought which is that "Patient Relations" is really just an enforcement arm of Administration .
Although I called as soon as I realized I wouldn't have the means to get there Scheduling at the UF Movement Disorder clinic informed me they did not have another opening until January!
Corporate at Emory has continued to harrass me for the past 7 months since December 3rd when I was abused in their ER and they sought to cover it up.
Because of all this and irresponsible and malicious charting in my medical record my treatment is unecessarily further delayed.
My current GP outside of Emory is working on a referral now to Vanderbilt and I am trying to get my diagnostic process back on track so that I can find out what is causing me to have Dysautonomia and the other symptoms.
I have been running a fever on and off for about 5 days now and my hair has been falling out at an alarming rate.
Several mornings this week I have awoken in the morning and found myself almost completely immobile lying on my back and needing to pee urgently. These episodes are usually accompanied by pretty severe systemic pain, and in addition to being unable to move my limbs for awhile even the muscles of my mouth are somewhat paralyzed and I find it difficult to control them to be able to speak.
This morning I almost didn't make it to the bathroom in time. (So far I've had actual incontinence twice). This problem does not seem to be sleep paralysis, as I am unable to move for quite awhile after waking up; sometimes lasting up to an hour. The episodes have happened a number of times since sometime in March.
I am making it on a wing and a prayer right now, just trying to hang on until I can get the specialized testing out-of-state, and treatment I need.
Among other things I am seeking IV Saline infusion and medical cannabis as treatment options.
As of yesterday 7/ 27/16 the Office of Civil Rights officially filed federal discrimination charges on my behalf on grounds of both gender and disability.
Do not go to the Cleveland Clinic. It’ll be a waste of time bc they’ll do some tests and then send you to their fibromyalgia clinic. Go to Johns Hopkins. They actually try to diagnose patients and don’t just list every difficult patient case as “fibromyalgia”. Don’t accept that you have fibromyalgia either. I really dislike the diagnosis of fibromyalgia bc I feel like it gives doctors an easy way to get out of doing their job. Every symptom in the world is listed under Fibromyalgia. You can have a few of the symptoms, all of the symptoms and have the symptoms change, all with the Fibromyalgia diagnosis. The term fibro=muscle fibers and myalgia=widespread pain. So, technically Fibromyalgia should only be used as a symptom of widespread muscle pain and not a diagnosis. Which is why certain medical insurance companies refuse to cover the cost of certain doctors visits and requested tests when fibromyalgia has been listed as a diagnosis. I’ve been blacklisted too and have a chronic illness. So if you want to hear my story and maybe we can figure out a way to fight the discrimination, you’re welcome to contact me at: itstonyabiatch@yahoo I’ve also worked in the healthcare field. So I have a few answers for you as far as blacklisting. Take care. :-)
I’ve been blacklisted too and have a chronic illness. So if you want to hear my story and maybe we can figure out a way to fight the discrimination, you’re welcome to contact me at: itstonyabiatch@yahoo I’ve also worked in the healthcare field. So I have a few answers for you as far as blacklisting. Take care. :-)