Disability Grants To Help MS Disabled Kacee Live Comfortable Debt Free Life
by Kacee Cole
(Tampa, Florida, USA)
MS Disabled Kacee Seeks Disability Grants To Live Comfortable Debt Free Life
My name is Kacee Cole; I'm almost 31 years old and live in Tampa, FL with my wife, our dog and our two cats.
I'm originally from the north Georgia Mountains, but moved to Florida with my wife in the spring of 2010.
I work as a licensing coordinator for a large manufacturing company that sells both wholesale and through e-commerce.Disability Issues
On Christmas Day 2013 I awoke early in the morning and found I had severe vertigo and I could not focus my eyes. I called for an ambulance, as I could not drive myself to the hospital.
When I arrived, an ER doctor spoke with me briefly before deciding to send me for a CT scan. When the results came back showing no anomalies, the doctor advised I see an ophthalmologist as my issue related to my eyes and not my brain.
I was certain something was happening and I requested the staff neurologist be brought in to assess me. Shortly thereafter I had an MRI done and was told they were admitting me for further testing.
I was taken to a room and hooked up to an IV before being told I needed to have a lumbar puncture done. That was a terrible experience that felt as though it lasted forever and once they were finished I was taken back to my room.
At this point my wife had to leave to go home and care for our pets, so a friend came to pick her up.
Being completely alone in that hospital room was extremely difficult, exacerbated by the fact that I was still unable to focus my eyes and therefore was unable to see anything more than blurred shapes and colors.
The hospital's neurologist came in toward the end of the day and told me I had something called Multiple Sclerosis; he started to explain what that meant and I told him I was familiar with the disease as both my father and one of my half-sisters had it.
He started me on a Solu-Medrol IV to calm the inflammation in my body causing the vertigo and optic neuritis. A social worker for the hospital contacted my insurance provider at the time and learned I had coverage for a home health nurse to come to my home and administer my IV medication.
The doctor wanted me to have a five-day course of the drug, so I received the first two doses while admitted to the hospital and then the remaining three at my home.
It is now coming up on four years since my diagnosis and it has been a very rough time. In the first year after my diagnosis, I struggled to find a drug that worked for me. I suffered severe relapses that have left permanent damage to my body.
Of course, I had to continue working full time to support my family, as I am the breadwinner.
As of January this year my MS is stable -- no new lesions, and no worsening of existing lesions.
I have neuropathy in my hands, arms, legs, feet and torso. I experience muscle spasms daily and they cause knots in my legs and back that are anywhere from golf ball sized to softball size. Those knots must be massaged out or I am unable to sleep.
There is nerve damage causing the left side of my body to feel a variety of painful sensations including burning and itching. I have muscle weakness in my legs, which causes an abnormal gait as well as pain.
I suffer from exhaustion and heat sensitivity and I am unable to walk very far before pain forces me to stop. These are all symptoms I experience daily – they never go away, they merely change day to day in their severity.
Since my initial diagnosis I have had multiple MRIs, and blood tests every six months. I take 16 pills a day to manage both my symptoms and the disease itself.
I've had to obtain a cane, walker and wheelchair, as day to day I never know which one I will need to help my mobility. Unfortunately, none of these is cheap, even with insurance.
I am lucky that my current insurance plan is a bit better than what I had for the first three years of being sick because my meds are now a bit more affordable.
Unfortunately, I am in a hole that has been growing in size for years. Each time I think perhaps things will be okay, something happens that ends up costing a large sum of money.
I must have a working car to get to and from work, but our vehicle is over 20 years old and needs a lot of repairs we cannot afford. My wife has been looking for work, but she is hamstrung by needing to be home at certain hours as she is my caregiver, so for the time being I am the only one bringing in money and it simply is not enough.
Despite our best efforts to trim our budget where possible, we still do not have the funds necessary to pull ourselves out of past due bills, most of which have late fees, which only compounds the issue.
I owe thousands to the hospital that I cannot pay as I struggle just to keep my neurologist's office up to date with payments because I have to be able to see him every six months, more if I experience a flare. I also have been going without one of my maintenance medications because I cannot afford the copay.
Since we live in Florida it is of the utmost importance I keep the power on in our condo. Multiple Sclerosis can cause heat intolerance, which I have, and that means I can and do overheat very easily.
Once I've gotten overheated I begin to have severe symptoms which can include, among other things, blurred vision, heightened pain, vertigo and worsening of my constant neuropathy which at one point did cause me to lose feeling below the waist for a month.Income Efforts
I have worked full time at my job for seven years. The company has been accommodating as to my illness and subsequent disability. It has allowed me to continue working after my diagnosis.
We have tried selling possessions to get extra money, but we no longer have anything of value to sell. Neither my wife nor myself have family we can call on to give or lend us money and our friends have so far been unable to assist as well.
We have both explored work at home opportunities and I have explored being a driver for Uber or Lyft, but none of these have panned out or turned into a wage-earning job.
We set up a You Caring crowdfunding page, but it has only gotten one bite for $20 and no additional shares or donations thus far.
I applied for assistance from a Multiple Sclerosis foundation, but have not received a reply.
My wife applied for assistance from the state of Florida, but was denied.Specific Needs
We are barely clinging on with rent and are currently in serious danger of not having rent money for next month. Our power bill is past due as is our phone bill.
Each month I delay my car insurance as late as the company will allow before they suspend my coverage.
I have assistive devices already in my home and because I am able to work I have been rejected for SSDI, but we desperately need money.
In order to be caught up with all of our utilities I would need $194 for our electric bill, $175 for our internet service (which I need to maintain for when I work from home; part of the accommodation I have at work is the ability to work from home if I am unable to make it to the office for any reason), $140 for our phone bill, $50 for my medication, and $890 for our rent.
Any portion that could be covered by a grant would go a long way to ensuring I can afford my medication and not end up without power or being homeless.