Laura/MoonDance's Disability Help
Spende geschützt
I am applying for disability, and desperately need help with basic expenses.
Basically, I have several health issues going on including;
1) An autoimmune conditional (Sjogren's Syndrome) that give me a variety of symptoms similar to MS and fibromyalgia - and I've now been diagnosed with fibromyalgia as well. One of the hallmarks of Sjogren's is dryness in all the mucus membranes, which leads to vision and dental issues, including frequent root canals, mouth sores, etc. all of which I have, as well as a general lack of mucus protecting my nose, throat, etc. It also have "flares" - flare ups where I feel like I have a fever (hot and spacey), but don't have one, and feel so dizzy and exhausted that I absolutely have to lie down. I have more flares when I am tired or stressed, and usually sleep all day for several days when this happens.
2) Sensitivity to fragrances, chemical odors and other smells - which give me headaches, and burn my nose, throat and sinuses. It is more severe than you usually see from Sjogren's alone so my ENT thinks there may also be an issue with exposure to toxins, but it's not just artificial smells, like you usually see with MCS. The more that I am exposed, the more sensitive I am to other smells: imagine touching a sunburn - or even rubbing sandpaper on it. Each smell is different. Going out shopping or to an event is like walking through a field of landmines, and smells from neighbors sometimes hurt me at home.
3) I have nerve damage in my face (*see below & pic above), which is aggravated by cold. Briefly being exposed to a cold wind or AC blowing on it can leave me hurting all day, and smells combined with cold are even worse. I have pain meds to take the edge off, but only spending the rest of the day in the warmth eventually relieves the pain.
I had constant pain the last couple winters, but also seemed to have an infection in the bone (osteomyelitis) where the bone graft was done that was flaring up throughout the year. An Enterobacter bacteria was found in my sinuses and I've been on several long courses of antibiotics... from two to six months straight... which has thrown a lot of my body off. Luckily this part seems to be better now, but the nerve pain is still an issue.
UPDATE: I’m now having pain in the same area on the other side of my face in an area where the teeth all already have root canals. It’s centered between #6 & #7, but the two front teeth (#8 & #9) have been feeling a little loose and shifted, similar to, but not nearly as bad as, when I had the cyst around #9, #10 & #11. Based on x-rays, the endodontist already thought I might still have some infection in #8, and wanted to retreat it (basically redo the root canal to clean out any infection), but it wasn’t hurting and I couldn’t afford it. Now, I’m taking antibiotics that my pain specialist gave me in cause the pain returned. The pain is better, but I’m concerned that the pain will come back as soon as I stop, and that I’ll need to have retreatment or apicoectomies on this side as well.
4) I have cartilage loss and arthritis in both knees. In addition, I had surgery on my left knee on Sept. 25th to remove a torn meniscus and a large piece of cartilage which was lose and rubbing. I haven't able to bend down or get down on my knees to pick up things and clean for over a year, avoid stairs at all cost, and have a permanent (5 years) handicapped placard.
UPDATE: My left knee has shifted and all the cartilage is gone. I now need a knee replacement on it, but will need insurance/Medicaid and a more handicapped accessible place to live first, as well as losing about 50 pounds.
I also still have shortened Achilles tendons, which cause plantar fasciitis and Achilles tendonitis, when I'm standing or walking as much as I used to in a normal day, but my knees generally prevent this anyway. Some of you may remember when I had surgery on my right Achilles tendon years ago to remove a pea-sized nodule that had formed on the back on the heel. When I checked on having the left one done several years ago, they found that a new nodule was already forming on the right side, and advised against it. This area, especially on the left side now, gets pulled and becomes inflamed when I walk, and doing so also contributes to the formation of the nodules. This is why I stopped walking for exercise years ago, well before I started having the knee issues.
5) I have a lot of issues with inflammation actually: including tendonitis in my wrists when I type too much and costochondritis (chest and arm pains similar to heart attack when I carry too much (it used to be frequent on my left side from carrying my laptop bag on my left shoulder) or have something too heavy (like my last laptop) sitting on my chest. I've also had carpal tunnel issues, but usually for me it's tendonitis.
6) I also have a bifurcated ureter on my left side - a congenital defect - which creates a "Y" where kidney stones like to get stuck, and had to have two ureteroscopic surgeries to remove stones in the Fall of 2014. This wouldn't be a frequent issue on its own, but when it happens just as you are running out of warnings for repeated going over the number of days that FMLA allows and uses up all the time you've earned back and a lot more - well, it literally made the difference between keeping my job and losing it.
All of the above are in addition to other basic health issues like diabetes and high blood pressure.
I kept trying to work for years, despite all of this, but quit going out and going to events - trying to save my steps, energy and ability to be around smells for work. They tried somewhat to accommodate the fragrance issues, but people using a scented hair or laundry product, unscented hair spray, etc. could give me a headache from eight cubicles away, and there were days when I couldn't sleep at night because I still had a headache from work that day. I had FMLA coverage for Sjogren's, including the sensitivity to smells and flares, the facial nerve pain and my mobility issues, but I eventually lost my job due to being out more than FMLA covers. I actually spent over six months getting back a day or two here (on a rotating calendar basis), then using it up, being out again and being written up for it, filing appeals to the warnings, etc., until there were no warnings left.
I have several doctors - all specialists - who feel that while the single the issue they cover may not be enough for disability, the combination of all the issues is more than enough.
I kept trying to work even though I was often in pain because I was afraid of being out on the street homeless, and now I'm afraid that is exactly what is going to happen. I've already spent all my savings, and I maxed out my credit cards months ago. The Salvation Army paid my November power bill, but the programs that can help with rent either require that I have a child in the home, or that I have all the rent except the last $100, which they pay only after I've paid the rest, which I don't have.
UPDATE: I was barely able to pay the December rent with help from people here and elsewhere, but I haven’t been able to pay the January rent, and I have now received an Eviction Notice.
I'm not sure how much to put as a goal - people are telling me that it can take years to get disability - but for now, I'm worried about paying my overdue rent, and keeping the utilities on.
Also, if anyone knows of a place that I could stay rent-free, please let me know. My fragrance sensitivity and mobility issues make it hard, and I can't imagine physically packing things to move, but I'm even more scared of being out in the cold with nothing.
Pictures:
- Cropped Letterhead from my first letter from SSI Disability
- * Slice from a CT Scan of my Head - The big "hole" on the left side is the 2.5 cm x 2.8 cm x 3 cm cyst that was behind the corner of my nose and around the roots of three teeth. It was removed & a bone graft put in, but now I have nerve damage, affecting a nerve that runs from there up the side of my nose to my forehead.
- A decade-old pic of me from PantheaCon. I thought I'd include it for those of you who only know me as "Moon". I do really miss being able to go to events, or just to travel in general. I'm glad I lived so much while I could.
Basically, I have several health issues going on including;
1) An autoimmune conditional (Sjogren's Syndrome) that give me a variety of symptoms similar to MS and fibromyalgia - and I've now been diagnosed with fibromyalgia as well. One of the hallmarks of Sjogren's is dryness in all the mucus membranes, which leads to vision and dental issues, including frequent root canals, mouth sores, etc. all of which I have, as well as a general lack of mucus protecting my nose, throat, etc. It also have "flares" - flare ups where I feel like I have a fever (hot and spacey), but don't have one, and feel so dizzy and exhausted that I absolutely have to lie down. I have more flares when I am tired or stressed, and usually sleep all day for several days when this happens.
2) Sensitivity to fragrances, chemical odors and other smells - which give me headaches, and burn my nose, throat and sinuses. It is more severe than you usually see from Sjogren's alone so my ENT thinks there may also be an issue with exposure to toxins, but it's not just artificial smells, like you usually see with MCS. The more that I am exposed, the more sensitive I am to other smells: imagine touching a sunburn - or even rubbing sandpaper on it. Each smell is different. Going out shopping or to an event is like walking through a field of landmines, and smells from neighbors sometimes hurt me at home.
3) I have nerve damage in my face (*see below & pic above), which is aggravated by cold. Briefly being exposed to a cold wind or AC blowing on it can leave me hurting all day, and smells combined with cold are even worse. I have pain meds to take the edge off, but only spending the rest of the day in the warmth eventually relieves the pain.
I had constant pain the last couple winters, but also seemed to have an infection in the bone (osteomyelitis) where the bone graft was done that was flaring up throughout the year. An Enterobacter bacteria was found in my sinuses and I've been on several long courses of antibiotics... from two to six months straight... which has thrown a lot of my body off. Luckily this part seems to be better now, but the nerve pain is still an issue.
UPDATE: I’m now having pain in the same area on the other side of my face in an area where the teeth all already have root canals. It’s centered between #6 & #7, but the two front teeth (#8 & #9) have been feeling a little loose and shifted, similar to, but not nearly as bad as, when I had the cyst around #9, #10 & #11. Based on x-rays, the endodontist already thought I might still have some infection in #8, and wanted to retreat it (basically redo the root canal to clean out any infection), but it wasn’t hurting and I couldn’t afford it. Now, I’m taking antibiotics that my pain specialist gave me in cause the pain returned. The pain is better, but I’m concerned that the pain will come back as soon as I stop, and that I’ll need to have retreatment or apicoectomies on this side as well.
4) I have cartilage loss and arthritis in both knees. In addition, I had surgery on my left knee on Sept. 25th to remove a torn meniscus and a large piece of cartilage which was lose and rubbing. I haven't able to bend down or get down on my knees to pick up things and clean for over a year, avoid stairs at all cost, and have a permanent (5 years) handicapped placard.
UPDATE: My left knee has shifted and all the cartilage is gone. I now need a knee replacement on it, but will need insurance/Medicaid and a more handicapped accessible place to live first, as well as losing about 50 pounds.
I also still have shortened Achilles tendons, which cause plantar fasciitis and Achilles tendonitis, when I'm standing or walking as much as I used to in a normal day, but my knees generally prevent this anyway. Some of you may remember when I had surgery on my right Achilles tendon years ago to remove a pea-sized nodule that had formed on the back on the heel. When I checked on having the left one done several years ago, they found that a new nodule was already forming on the right side, and advised against it. This area, especially on the left side now, gets pulled and becomes inflamed when I walk, and doing so also contributes to the formation of the nodules. This is why I stopped walking for exercise years ago, well before I started having the knee issues.
5) I have a lot of issues with inflammation actually: including tendonitis in my wrists when I type too much and costochondritis (chest and arm pains similar to heart attack when I carry too much (it used to be frequent on my left side from carrying my laptop bag on my left shoulder) or have something too heavy (like my last laptop) sitting on my chest. I've also had carpal tunnel issues, but usually for me it's tendonitis.
6) I also have a bifurcated ureter on my left side - a congenital defect - which creates a "Y" where kidney stones like to get stuck, and had to have two ureteroscopic surgeries to remove stones in the Fall of 2014. This wouldn't be a frequent issue on its own, but when it happens just as you are running out of warnings for repeated going over the number of days that FMLA allows and uses up all the time you've earned back and a lot more - well, it literally made the difference between keeping my job and losing it.
All of the above are in addition to other basic health issues like diabetes and high blood pressure.
I kept trying to work for years, despite all of this, but quit going out and going to events - trying to save my steps, energy and ability to be around smells for work. They tried somewhat to accommodate the fragrance issues, but people using a scented hair or laundry product, unscented hair spray, etc. could give me a headache from eight cubicles away, and there were days when I couldn't sleep at night because I still had a headache from work that day. I had FMLA coverage for Sjogren's, including the sensitivity to smells and flares, the facial nerve pain and my mobility issues, but I eventually lost my job due to being out more than FMLA covers. I actually spent over six months getting back a day or two here (on a rotating calendar basis), then using it up, being out again and being written up for it, filing appeals to the warnings, etc., until there were no warnings left.
I have several doctors - all specialists - who feel that while the single the issue they cover may not be enough for disability, the combination of all the issues is more than enough.
I kept trying to work even though I was often in pain because I was afraid of being out on the street homeless, and now I'm afraid that is exactly what is going to happen. I've already spent all my savings, and I maxed out my credit cards months ago. The Salvation Army paid my November power bill, but the programs that can help with rent either require that I have a child in the home, or that I have all the rent except the last $100, which they pay only after I've paid the rest, which I don't have.
UPDATE: I was barely able to pay the December rent with help from people here and elsewhere, but I haven’t been able to pay the January rent, and I have now received an Eviction Notice.
I'm not sure how much to put as a goal - people are telling me that it can take years to get disability - but for now, I'm worried about paying my overdue rent, and keeping the utilities on.
Also, if anyone knows of a place that I could stay rent-free, please let me know. My fragrance sensitivity and mobility issues make it hard, and I can't imagine physically packing things to move, but I'm even more scared of being out in the cold with nothing.
Pictures:
- Cropped Letterhead from my first letter from SSI Disability
- * Slice from a CT Scan of my Head - The big "hole" on the left side is the 2.5 cm x 2.8 cm x 3 cm cyst that was behind the corner of my nose and around the roots of three teeth. It was removed & a bone graft put in, but now I have nerve damage, affecting a nerve that runs from there up the side of my nose to my forehead.
- A decade-old pic of me from PantheaCon. I thought I'd include it for those of you who only know me as "Moon". I do really miss being able to go to events, or just to travel in general. I'm glad I lived so much while I could.
Organisator
Laura Keen
Organisator
Durham, NC