Does your diagnosis (or lack thereof) affect your life?

[treebranches]

Does your diagnosis (or lack thereof) affect your overall life?  Do you say "no" to doing things you would say "yes" to if you didn't have MS or the symptoms of it?

[Sailorsong]

I'm happy that you loved my photos! Photograpy is just one of my many passions and one of the main reasons I wanted to do back country in Alaska. My love affair with nature actually started just a few miles south of where you live when I was 10 years old. My dad was stationed at Ft. Lewis and the first time I saw Mt Rainier I was in love with nature. It has only been the last year that I have given up on the back country in Alaska as my breathing and balance problems have gotten much worse. 6 months after my 3x bypass I was out Kayaking on the Buffalo River so that was not going to slow me down. I figure the way things stand right now the best I'll be able to do is maybe one of those cruises out of Seattle to Alaska. Of course I could check into a lung transplant, and some computer controled legs in order to do the back country. :)

Once I finish the remodel of my home I plan on selling it. It was a forclousure when I bought it and figure that I can make about $100K on it once it is finished. I base this on the fact that the house across the street from mine just sold for $135K. It is only 1600 sq ft, 2 bedroom, 1.5 bath. on 5 acres. I bought my home for only $73K, it is 5 Bed., 2 bath, on 10 acres.  With what I make on this home I want to buy 40 acres and build an eco friendly home powered by wind and solar. I have seen some land in northern NV that looks promising in that respect.

Dennis

[HVAC]

The first Neuro told me I probably had MS on the phone right before Thanksgiving. He said come get your records and find another Neuro to do an LP I am leaving. The Neuro he sent me to threw me out of her office for asking questions never did an LP.
I was left with no support for nine months. At first I freaked completely I did not know anything about MS.
I started exercising, improving my diet, and taking supplements
Then I read all I could about the disease. It became less scary.
It helped to know it can take years to be diagnosed.
Nine months after the first visit I got a new Neuro , who speacializes in MS. I eally like.I have not been diagnosed as having MS but he says it can't be anything but MS. I go for another MRI in February.
I am very active. I remodeled two bathrooms and now a kitchen. I bought a Hot Air Balloon Ride from a charity and am planning a trip to France in four years.I take it one day at a time.
I also have a lot of health issues bipolar, asthma,allergies, alcoholism, a bad knee,chronic mononucleosis, a bulging disc in my neck, a herniated lumbar disc with a bone spur, and a heel spur and partial deafness. I am basically happy.

[treebranches]

Loooooooove the photos.  I know what you mean by lack of explanation and people thinking you're making it up; five of nine doctors said I had symptoms because I was clearly depressed being a young woman and all.

I have asthma, a heart murmur, a bum knee, hypoglycemia and of course the nerve disorder so I know what you mean by being bogged down my medical labels.

I also want to go to Alaska, it's so untouched and beautiful.  You might not be able to handle to backcountry, but why does that keep you from camping there at all?  You could even just "rough" it in a hotel or cabin!  You cannot just visit 49 states, you need to do all 50 and finish what you started.  :-P

I used to live in Memphis and I think I drove through your town on my way back from Fall Creek Falls; we took a -lot- of weird backroads and went through Lynchburg, too.  Beautiful part of the state.

When you're done renovating your home, what will you do?

[treebranches]

"Most importantly I care much less about what people think. I have a right to a full and active life and am intent on doing anything and everything I can."

I think that is an important point we should all remind ourselves of.

I'm glad you made the decision to not keep yourself in your home.  I find that people don't "mind" that we have "funny" symptoms like spasicity, cognitive or speech issues; the more people become aware of conditions like MS, the less they think these "quirks" are "weird."

Learning tricks to help you cope, like the ice packs, is a great idea.  

On a sidebar, I do tech support for a game company and called a woman who needed help getting her system connected to the internet.  She had speech and cognitive impairments and appologized for them before I began to help her.  I told her there was absolutely no need to appologize for it and that I understood how difficult it can be.  Once we were done, she thanked me for my patience, understanding and for helping finish some of her sentences when she needed help.

I think that if any of us ever need help, ASK and never, never, never appologize or feel embarassed about symptoms.  We can all learn to live as we want.

[pennst8r]

I used to be very much effected by my symptoms mostly, but also the lack of an explanation for them (you know, the people who just think you're a hypochondriac or something since there's no name for your problem). I went almost nowhere - not even the grocery store for fear I would fall, have ill effects from heat or have an unsightly spasm.

I made a conscious choice at some point, late spring I thin, that I simply cannot live this way. I have become very good at not letting it show if I have spasms or spasticity. I keep ice packs cleverly nearby when its hot (and somewhere cool to go if need be scoped out in adavnce). Most importantly I care much less about what people think. I have a right to a full and active life and am intent on doing anything and everything I can. Very freeing. I make little or no mention of my issues unless asked; then I simply explain that I have a neurological condition (which has been established) and leave it at that. On occasion I have to explain some of my cognitive and speech involvement, as its hard to hide, but only explain it as the neuro issue.

Penn


Penn

[Sailorsong]

So far the closest I have gotten to a Dx is "Strong likelyhood" and "Most likely" to have MS. I have not actually taken the poll as just about every answer applies equally to me. To make it even harder to answer your poll is all of the other health problems I have which effect my answers.

My dream vacation has been for many years to go hiking the the back country of Alaska. This is the only state in the US I have not lived in or visited. But due to COPD, MS, and Heart problems I have been forced to give up that dream. So that question is a YES.

I have also given up on finding a woman that I can love and that would love me because of my health problems. I just don't think it would be fair to the woman. So that one is also a YES.

On the other end of the spectrum I also don't let my health hold me back. I am currently doing a complete remodel on my home. It takes a lot longer than normal because I can only work about 1 hour at a time on it.  Right now just about every room in my home is a mess as I have to try to pick things I am up to any given day. One day it might be putting up some drywall, while another day the most I can handle is some painting. It is really a very big project as my home is 3200 sq. ft. with 5 bedrooms, 2 baths, and a large family room. Every room needs work done and I'm doing this all by myself.

Another way my health has not slowed me down is that since I first got sick I discovered, quite by accident, that I am very good at composing music and writing song lyrics. I wish I could post some of my music here so that all could hear it.  BTW you would probably like the photos I popst in my profile. The latest one I posed are from the last time I visited my brother & mom out in Southern Oregon.

Dennis

[treebranches]

Just bumping this up to make sure everyone votes. :-)

[treebranches]

I had tried to post a beautiful picture I took at the end of my last post, but apparently these forums don't support html?  If you like, it's here:

http://oceanmeetsky.com/Olympic_Mountains.jpg

[treebranches]

Thanks for taking the time to read this poll and answer.  Please, please, please feel free to elaborate because I'm sincerely interested in how you're being affected and I find it really interesting how it can vary person-to-person.

Personally, I found my meager diagnosis of "peripheral neuropathy" daunting at first.  I had no idea what it was, how I "got it," how it would affect my day-to-day life, etc. and the medication (gabapentin 900mg/day) was really changing my functionality at work and home.

I of course have read anything I can on the condition (or whatever you want to call it) and being the pesimist I have always been, it was one more thing on the grocery list of health issues I have -- like many of you.

Months after my diagnosis (January 08), I've hit a point were I remind myself that I'm capable of anything despite the odds or whatever holds me back or down.  As a result, my boyfriend and I took a two and a half month hiatus from work to travel Washington, Oregon and Canada (we live near Seattle).  

Since then I've been doing more things and finding that it is possible to have the same lifestyle, or at least a similar one, that I had before this whole "ordeal" started, before the diagnosis got me down.

I guess my point is that I personally have found that why should I lay in bed in pain despite the medication when I could be laying in a tent in the mountains with a beautiful view, doing what I love despite it all?

[treebranches]

Thanks for your response, and as for your question:

On the forum of choice, at the top, is the green "Post A Question" button.  Once you click it, it takes you to where you post a new forum topic.  At the top of this form are two radio buttons and to post a poll, you simple select that radio button.  Once you have that, the form changes and it's pretty straight forward from there.  :-)

[Erin0313]

Last week I was asked to start a thread on Rituxan as an MS med. I was wondering how did you set up your survey.?
  Oh my answer to your question is I do a lot less social activity except with family because I don't want to regret being somewhere when I suddenly get too tired or the pain is too much and I wish I was home. Then you have to explain your exit and if people aren't aware of your MS etc, they want to talk when you want to go or even worse they get that uncomfortable look on their face.

Thanks
Erin

[wonko]

This is such an interesting point to discuss, but also difficult to answer with a single option.  I don't have a dx, and also don't at this time think my ultimate dx will be MS.  I've been living with gradually worsening sx for over a year.

For me, it is all about picking my battles.  There are some events/commitments where I won't let this hold me back.  There are other times where it makes more sense to edit my plans.

Things like housework have lowered on the list, while I do everything I can to work as much and keep professional obligations.  

Also, activities and plans that make me feel "normal" I try harder to keep.  Like I went to the mall last night with friends.  I ended up having to sit on benches while they went into some of the stores, but I went and am glad I did.

A couple weeks ago I needed to be out of town for a week for work.  I didn't participate in the events as much as I should have or would have liked, but I went and gave my presentation.

But on the flip side, I spend a lot of time resting up in advance and after the fact.  All of that "down time" is a big way in which my lack of diagnosis affects my life.