Hi All...
So I am in a bit better frame of mind today. Thank goodness the
melancholia didn't last long.
Thanks to all who provided words of encouragement and support!
Susan - I'm so sorry you are going through so much pain - physically and
emotionally! Sounds like you and I are very physically similar... I too
was paralyzed from the waist down initially in the hospital, but after
the steroid treatments and two years of physical therapy, I can feel
"pressure" in my lower body, but it is relatively "numb" otherwise. I
can't feel a sharp cut, but can feel a bump. I also have no temperature
sensation from the chest down. I do use a cane when I'm out at the mall
or grocery shopping, but not at home or walking into a restaurant (it
just gets in the way).
I do have a "LifeLine" unit/necklace since I am home alone most week
days and my balance is a little precarious. Living in a two-story house,
my family was very concerned about my falling and no one being home to
help. Is this something you might consider getting if you are home alone
much? The "LifeLine" unit is extremely sensitive and is the only one
that can actually detect a fall (as opposed to just laying down in bed
or sitting in a chair). I'm actually living proof - I was raking leaves
in my front yard and my bad leg/foot tripped me up and I "rolled" over
into some low bushes. I didn't hurt myself and managed to get back up on
my feet, but before I knew it, my phone was ringing with LifeLine asking
if I had fallen and did I need help. Had I not been able to answer and
assure them I was fine, they would have dispatched 911 and then called
my husband. They set you up with a lock-box for 911 to be able to enter
your home and they relay all your medical information to the medics.
You mentioned possibly being on Cobra... have you checked out getting
Medicare? I was only 53 when TM hit me, but because I had to quit my job
due to my disability, I was eligible for Medicare. A year after getting
TM, I tried to return to work. They said I could only do part-time for
six months, then I'd have to go back to full-time. After only two months
at part-time, I was so physically exhausted and in such pain, I knew I
would never be able to go full-time. And I had a desk job with a boss
that let me write my own hours! I had my doctor supply a letter
detailing my physical limitations, I filled out all the paperwork for
Medicare and was approved. I hear some people are automatically declined
the first time they submit their paperwork, but you have to be
persistent and re-apply. That may be an option for you.
I hope and pray your situation resolves itself in your favor. You
deserve some relief, kindness, love and support. Hopefully, this group
can at least provide you with the love and support! Stay strong, let us
know how you're doing, and we'll keep you in our hearts and prayers!
Hugs,
Betty
On 4/17/2013 10:01 PM, Susan Gullekson wrote:
Hi to Everyone--I don't post really, mainly read and pray for all. I
hit my 5 yr anniversary last Nov. (was in Jan. of 5 yrs knowing I have
Devics). It was during my 1st relapse that I was paralyzed from the
waist down, numb from the bra line down. It is amazing the recovery
that can sometimes take place as I would be considered one of the
"walking wounded". It was 2 yrs ago that I stopped using my cane. I
do drive around town, but rarely on the interstate. Part of that I
think is due to all the medication and the "not quick reaction" that I
should have.
My biggest concern right now is that my husband and I are
separating--briefly, permanently I don't know. We have one son in
college and the other one is in 4th grade. The oldest has known
everything that has been going on for the last 1 1/2 yrs, but the
youngest we just told 2 weeks ago that we are separating. I am so
scared of the unknown, being by myself (the youngest will live with me
though), we have no family close by (1400 miles away). I do have
great friends and neighbors, but it's not the same. I'm so scared of
having a relapse. Who will be there to meet with the drs., take care
of me, and all that goes in to making sure that the medical people
know exactly what they are dealing with. What happens with my son if
I can't take care of him by myself. It would kill me if he had to go
live with his dad all the time. What happens with my health
insurance? I know that I could be on cobra for 3 yrs, but then what?
I already told my husband that even if we get to the point that we
want to divorce, we really can't unless he needs final decree papers
as I can stay on the family health insurance until then. That's all
the bigger stuff, but what about those days that ya just need some
extra support. The stress in all of this sure hasn't helped. I firmly
believe that if it wasn't for the Cellcept and Hyzentra infusions
(along with all the pain meds) I would have ended up in the hospital
with a relapse a year ago. BTW I am one of those that is on both
Lyrica and Neurontin along with Zoloft and Tegertol.
I so never expected to have my life be so flooded with health issues
(type 1 diabetic/thyroid removed also), but then to have a husband who
walks away?
Sorry to ramble, not a very good introduction, but we just had a
fight. He moves out this weekend.
Thanks for reading,
Susan
> From: [email protected]
> To: [email protected]; [email protected]
> Subject: Re: [TMIC] Anniversary
> Date: Wed, 17 Apr 2013 23:11:24 -0500
>
> Betty,
> I have just hit my "6th" anniversary. What I remember most about
that day
> is fear - with a sudden loss of strength in my legs, and fear again
when
> the ER nurse looked at me and said "we don't know what is
> wrong with you, but you are a very sick lady". Much hard work (blood,
> sweat, and tears) and good improvement have marked my 6 years. From
being
> paralyzed from shoulder blades to toes, I now only need
> a cane to walk.
>
> I admit that my husband being 67 and my being 66 causes me to worry
about
> the later years. But, we have a loving family. I also believe you only
> live once and, even with TM, I want to make the best of it.
> Of course, Zoloft helps!! I understand how you feel about leaving the
> house. I am always afraid I will fall in public, or my bladder will
> embarrass me, or my colostomy that I now live with will be a problem.
>
> I don't want to be defined by a disease - it is just one part of who
I am.
> I also realize there are those who have it much worse than I do. My
> prayers go out to them every nite.
> Hang in there and do the best you can to kick TM in the butt!!!
>
> Janice
>
>
> -----Original Message-----
> From: Betty Clark
> Sent: Wednesday, April 17, 2013 6:09 PM
> To: TMIC
> Subject: [TMIC] Anniversary
>
> So today is my "lucky (???) seven" year anniversary with TM. At this
> time seven years ago, I was inside an MRI machine for over an hour
> trying to hold as still as possible while my legs continued to spasm
> about every three minutes. By far, the worse, most painful day of my
life.
>
> Though usually fairly optimistic and more on the positive side of my
> feelings, I find myself in a more pensive and reflective state today.
> Wondering what the next ten-to-twenty years look like... will I still be
> able to function well enough on my own, without assistance? Will I be
> able to keep the ugly monster at bay and not let it completely destroy
> my outlook on life? Can I continue to find enough joy in my daily
> existence?
>
> I know I will have to forcibly take the reins and get myself out
> regularly so as to not become a recluse in my own home. I have realized
> since I had to "retire" from my job six years ago because of TM, other
> people's lives have gone on and most have little time to waste coming to
> visit or entertain me. I must make the effort if I want to maintain any
> relationships outside my own home and family.
>
> Of course, my fervent and continuing prayer is that by some miracle, a
> cure and treatment will be found that will help everyone saddled with
> either TM or MS. As I begin another year of pain, medications,
> limitations, etc., I wish everyone peace of mind and soul.
>
> Hugs to all,
> Betty
> (in Northern California)
>
>
