Merely Me's MS Central Question of the Week!

Hi Merely Me,

You pretty well know my story, but here goes again with a little different perspective. I'm not diagnosed but I have probably spent an average of three hours per week at doctors' offices over the past six months. These include General Practitioner, Neurologist, Neuro-Cognitive Specialist, Psychiatrist, Psych Social Worker, Opthalmologist, Ear Nost Throat Specialist, Eye Surgeon, Sleep Disorder Specialist, and Prosthetics Specialist. I'm sure I've missed someone in there.

So far all of the above has been covered by the Veteran's Administration as "presumed" service connected and related to my many years in the Army. On top of that coverage I have private medical coverage through an HMO that my employer and I share contributions to. I have long and short-term disability insurance, but I am not eligible for some additional private coverage due to pre-existing conditions. I also contribute to a health spending account. Though we have a daughter just starting college and two more headed that way in a few years, we have paid off our house and are basically debt free. We paid everything off and got out from under debt when I started not feeling well and while I can still work.

One of the reasons I went into the Army was for the medical care and retirement benefits. When I joined at age 17 I didn't anticipate 30 years later having a neurological disorder, but I considered the possibility that I could become disabled. Likewise, one reason I've stayed almost 13 years at the same civilian job was the excellent health coverage, 401K, and pension plan. I don't earn as much as my peers who change employers every few years, but I'm on track for a good retirement in about 20 years (assuming I don't get too sick to work sooner than that).

I think the basic thing I'm trying to say here is that I did my homework a long time ago. I researched career options carefully and continually reassess my situation. Now that I seem to be having mental and physical health problems I'm looking at additional options such as buying more private insurance, finding safer and more healthy work (no more military deployments hopefully), and taking better care of myself. Since my company has offices world-wide, I'm considering other locations that they could transfer me to that have lower medical costs, etc.

If I didn't have health insurance at all, and I didn't have the VA to help me, I don't know what I would do. I'm not too proud to go to a social service agency for myself or my family if necessary. There are also a lot of charitable agencies out there, but I don't know how much they can actually provide. I would have to work as long as possible and hope my kids could eventually help me out.

KJ

I am blessed, I still have health insureance for the moment, I pay for it right now, but I do not complain.  For those who do not, it is a hard road,  I have been there, and you just do without the MS meds, because they are just unaffordable.  I take Beterasarone, and with my insurance I pay $20.oo per month, without insuranct it would cost me over $3000.000 per month my debit card would scream  I find it so dishartening; we are suppose to live in the greatest country on this earth, and we have people risking their lives to get here to live the American dream, but there is not a health plan to help those who are sick with non curable illnesses alive, and we let the drug companies charge prices for medicine that the average person could never pay, so they DIE God Bless America!  I say this with the greatest amount of love for the country that I live in, but I also wonder why, where did we go wrong.  Are we not our brothers keeper?  The rich get richer, the poor get poorer, and the sick just die.  Sad, but true, without the meds, MS,Cancer, or whatever the quality of life for anyone is not good.  No one ever knows who will be next, we didn't!  I did not mean to sound so harsh, but the truth is harsh sometimes. Sorry Merely Me

sherry/smomdukes

Merely Me,

I'm glad to hear that your PA thinks you are doing well! That's great. What do they say about the recent movement problem that you had? Do they just chalk it up as one of those mystery symptoms that comes and goes?

I ask those questions partly to set up the following question. As unpredictable as MS is, how do you deal with the possibility that a flare-up or related issue could cause some really serious problems - not just to you but to people around you? At my worst I've had some really disturbing cognitive problems (like not knowing where I was or where I was going). I've also had delayed comprehension of things around me and slow reactions. If I were a police officer or an air traffic controller I might feel compelled to change careers to avoid potentially really hurting someone. I know that's a lot of "what if...", but I think about this stuff a lot.

Thanks as always,

KJ

Insurance is and has been a nightmare for us and the nightmare is almost over. I go on Medicare February 1st and expect that to save me at least $1,500 per month. I do have insurance (HealthNet)and they hardly pay for anything. My tax returns for '08 show a  $44,000 medical expense deduction and that is ridiculous. I used to be with United Healthcare (through COBRA) and when the former employer cancelled the group, they cancelled my insurance. I asked if I was eligible for a continuation of the policy and they said  "Yes and your new premium will be $4,100 PER MONTH."

As I see it, there are two big and fixable problems that we face. One is that after being approved for SSDI, there is a two year wait to get Medicare. The good news is that there is legislation in process to eliminate the waiting period HURRAY! The other issue is that the insurance company can cancel insurance for people on COBRA if the group goes away and that should not be allowed. It probably has to be done on a state by state level.

All that said, I do believe that there has never been a better time for living with MS. More treatments exist than ever before and new treatments are coming out almost daily. We will cure this disease and I am grateful that I am alive today and will get to witness it.