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)
>
>
