Sunday, January 9, 2011

Invisible Illness to Visible in on fell swoop!

X-ray image of my own hip, with top of femur b...Image via Wikipedia

January 4, 2011.


Just wanted to wish you all the best for the new year and explain my quietness.  On November 15th,on my way to the bathroom, my feet flew out from under me, upending myself, landing fully and heavily upon my back. I spent at least an hour trying to use the bed skirt as something to grasp for an hour or so trying to get myself up, although I had my phone in my pocket but as usual, refused to dial 911, lest there really be nothing wrong. HAH!  Eventually, I did get myself up off the floor and clambered onto my bed in great pain.


Finally, I had the necessary CT scans,an MRI and chest and upper spinal X-rays yesterday afternoon  and yep, my sacrum is cracked and everyone possible has chastised me for not going to the ER on Thanksgiving. (Seems like I've been in this same situation again before! Will I ever learn? (Doubtful!)


Despite the horrible pain, I would not have been able to manage at all without my wonderful Nursing Aide who was scheduled the next day. However, without her, on her days off I fell apart and finally got myself to my doctors.


As much as we may despise medical procedures, there are obviously times that we should readily allow ourselves to be rolled into that ambulance lest that non-treatment worsens our physical problems.


What I fouund extrememly interestring was that I went from that "invisisible" disease that we all hate, to that other extreme where I was no longer an "invisisiblely" diseased person but a seemingly highly visibly ill person dependent unpon a walker and or a cane.


I've used canes, mobilized scooters, walkers and/or wheelchairs yet still was treated as though I was a malingerer. Now, though I have no visisble "marks" or am using nothing other than a cane, the news of a broken hip has changed folks' impression of my illness from non-serious to something more critical.


I wouldn't wish neither my Lyme nor my broken hip on anyone, but I surely would appreciate the same consideration for both.
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Wednesday, August 25, 2010

(OLD) WOMAN AT RISK

Northern hemisphere is highlighted in yellow a...Image via Wikipedia
I've had few things to write about recently and I've missed that. I've kept myself somewhat active and visible by passing along bits of information that I've hoped folks would find informative and/or interesting as Facebook status updates.

Despite my quietness, a lot of things have been going on with me. As I've mentioned before, my a.c. broke down for good last June. In looking back, it was positively chilly last Summer compared to this year - not only in Florida, but throughout the Northern Hemisphere. For folks who are sick or elderly, high temperatures are dangerous because elderly folks have a harder time in regulating their body temperatures, making heat stroke and heat exhaustion a possibility. With weeks of outside "feels-like" temperatures of over 105 degrees day after day and indoor temperatures over 94, the fans are the only saving grace for me and the dogs.

Also my refrigerator had stopped working last August, and soon after, the brakes in my car quit.

I've been plodding along for these many months, driving with my emergency brake always at the ready (aggravating my compressed L1-S5 fracture and its bilateral sciatica), lugging in 10 pounds of ice every other day or so that I place within a styrofoam cooler inside the freezer portion of my frig, and utilizing the hell out of existing ceiling and new upright fans throughout the house.

I kept this all pretty much close to my chest, mainly out of embarrassment and shame. While I occasionally mentioned some of those problems on Facebook and/or Twitter, my neighbors and offline friends knew little until recently.

I think because I was becoming increasingly tired and depressed with the"routines", I started mentioning it to my closest neighbors, especially after my car finally broke down and I needed to ask for assistance from those neighbors in order to get groceries, etc. Whatever funds I had pieced together to buy a refrigerator this month were spent instead on the $771.00 it took to get my car out of the repairman's "jail." To add to my depression, that repair bill left me with less than $20. for the last 20 days of the month, leaving me begging for food money.

A week ago Friday, a lady knocked on my door and was quite insistent that she enter my home. Since I've been so sick for so long, the place was a mess and having someone from the County demanding access was extremely embarrassing and shameful. Initially, I thought she was here because of my messy house, but it turned out someone had indeed called the Elder Hotline, but because someone felt I was at risk.

Of course, they don't disclose who makes that phone call to the Hotline, but I can certainly guess who it was. If I could speak to that person, I would thank her profusely. I am exceedingly grateful for her making that call that has brought me so much help.

The investigation into my situation began then and it has initiated a flurry of much-needed help for me that would not have happened had I requested them myself  (which I had done, wheelchair bound, pre-Lyme diagnosis, around 1999, and was rebuffed in the most patronizing, condescending manner by two county employees who called themselves social workers).

The services which they have now qualified me for include:
1. An aide for an hour each morning to help me get in and out of the shower and assist with whatever personal care as needed.
2. Assistance 3 times a week for an hour for light housekeeping.
3. Assistance for 8 hours to help do a thorough cleaning.
4. Monthly pest control.
5. Meals on Wheels that provide meals for 7 days a week including a hot meal each noon.
6. Of course, my own Social Worker who oversees and directs all.
7. Had I a landline, I would have been supplied the services of Lifeline (LifeAlert?). Since I utilize my cell phone only, I'm instructed to always have it with me.
8. A referral to an a.c. company to actually evaluate the status of my a.c. I don't recall (if I was told) what is going to be done with that information they garner. But I do know that it would be wonderful to get another opinion as to the status of my 21 year old air conditioner, especially one without such a vested interest in it being irreparable.
9. It will be requested that I receive an emergency waiver so that I can be placed on Medicaid as soon as possible. Apparently this will save me money but without the emergency waiver, I'd be placed on a 2 year waiting list before it would go into effect.

Pretty amazing, no? The best is that the first month is free. All services were in place within the first week. If services are provided after that (and it's expected to) the cost to me, based on my income, will be $41.00 month. !!

We read stories about others like me all the time. Those who are struggling to stay independent and in their homes but are clinging desperately to that dream and certainly need help now.
Make that call now to help another old person at risk!.
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Tampa, FL, United States
I thought that my "troubles" began in 1989 when I was rear-ended by a druggie going 60 miles an hour while I was stopped at a city red light. Two years later, Fibromyalgia was diagnosed. Since I had all the symptoms, it seemed like a valid diagnosis and I was grateful to finally be diagnosed with something! Subsequently, I spent many years immobilized with widespread pain secondary to only being treated with a series of SSRI's. In 1994 I had to retire early and lost my new husband who, like my former employer, just couldn't understand my sudden change in behavior and decrease in mental faculties. To be somewhat fair, those were the "Dark Ages" in Fibromyalgia treatment. I didn't know until 2001 that my "troubles" had started on a beautiful day in 1985 when walking on the Mohawk Trail in NY I was bitten by a microscopic tick and developed Lyme Disease that was misdiagnosed as psychiatric problems, FM then CFS for the next 15 years. If my story sounds like yours, please, PLEASE get tested for Lyme by a reputable laboratory and interpreted by what we call a LLMD (Lyme-literate MD).Both the lab and the MD are equally important to your quality of life.