It's island time - Limbo check in 9/5/2012

[minivanmama]

Good Afternoon limbo island! Grab a cabana boy or girl and order something to eat and drink. Grab a hammock and tell us how you are doing. There is a cool breeze blowing and the sun is going down. What a great time to visit the island.

How are you doing/feeling this week? Hope everyone is doing well and feeling good.

Are there any doctors apts this week? Any tests this week? Any doctors or nurses that need to swim with the sharks? Any one need to scream?

In island news - Hope to see evryone on the island soon. I am going to get chaught up on how everyone is doing.

If you are undiagnosed then this is the place for you. Come and tell us your story. The island is waiting.

Sorry i have been away so long. Things have been crazy busy and my fatigue has been hanging around. I am feeling better now and i hope i stay that way a little longer.

I have also been looking at nurseing schools and taking steps to have someone replace me as i am stepping away from ministry to go to school in January.

I did have a good trip to the beach with my DH. We celebrated our 15th anniversary. We renewed our wedding vows on the beach. I was good to just get away and have a good time.

Well i have to help kids with homework. I will check back in soon. Lots of (((hugs))) everyone.

[3uph0riabunnyfac3]

First appointment with my new pcp is tomorrow. It's been put off for months because everytime i set an appointment, I'll have a neuro visit and the only time they can schedule the next appointment is the same friggin time as my pre-scheduled pcp. but the neuro is so much harder to get into.

My son started a new pre-k class tuesday, and I started a new job at a big fancy corporate asset company and I'm pleased as punch and so excited I can barely speak in regular hearable human tones. They are amazing with disability accommodation and even offer work at home. The pay is amazing and we can finally get our family out of this horrible temporary living situation and into an actual home (hopefully close to work, because an hour and twenty minute commute through denver traffic is horrible on the best of days, let alone with vertigo or paralyzed arms. or confusion. you know, like those things. ) AND has medical benefits and all kinds of crazy amazing perks and awesomenessawesomefaceawesomestuff.

anyway

things have been deteriorating emotionally, mentally, physically, job-wise...life wise...everything since january. The only good thing has been how supportive and amazing my partner (FIANCE SOON! BAHAHAH) has been the whole time and how loving and taking care of me and everything i could want or need...I can't even express how he's just been the greatest thing that's ever happened to me and my son. but, things finally feel like they're turning upwards and now the only thing that could make life easier and better is if i FINALLY get a diagnosis and hopefully figure out a treatment to make work and life more manageable.

I hope everyone has had a great week and that life is going well!

[journeyman]

3uph0

Wow ! A fiance' that is still there that knows the possible outcome. I usually read where the initials MS will send a long-term spouse to bolt. You need to really cherish that person and frequently tell them how much they mean to you.

My wife of forty-one years is the best part of me. I never had a girl-friend who would stick with me for more than six months. So when this gem came along I gave the marriage only six months to a year. And even with four years of MS dx under my belt she is still here. (and just to add to that I just went back into limbo because they say, "I quack like a duck and walk like a duck but they are not sure I am really a duck. So... between now and Jan. I am being completely re-tested.) An there stands my wife by my side. STILL.

Just when you get over the grief and anger at your dx and accept your label they take it away from you. I do not plan on going through all that grief and anger again. I still have all the symptoms and lesions. Nothing has changed except they have tried to take my label away. I plan on keeping it until they truly find something else to call me. It's just more comfortable that way. That way I can deny my Limbo status but I choose to be here because there just might be something I can do to support all of us here.

And...often you guys support me. So I need you too.
Dave Tampa, FL
"Journeyman"

P.S. My name "Journeyman" came from being a medical missionary to Central and South America for about 20 years. I would go down with my team of about 20 about twice a year for ten days at a time and see 800+ patients in a five-day period. But I still carry that name because my MS has taken over and is now my new journey.

[gowiththeflow]

Hello all. took a bit but found my way back to the site. cognitive issues, can't love them but have to ....oh wha t was i saying?

Search still on for competent caring great diagnostician of a neuro who can sort me out as I am according to the docs "complicated". No clue where to turn except nearest teaching hospital. Hiding deficits from loved ones becoming tedious - not sneaky by nature. Knew i shoukld have appreciated being young and superwoman more! Hubby said enough n made me peel the S off my chest few years back. It had been there 40 odd years, so OUCH! darn chest hair.....

This flare up of "wahtever you wanna call it this week" is getting worse, affecting not only hands arms and brain, but now both feet and legs, walking is funny - look like a big duck waddling along.

Journeyman, as a possible fellow duck, we should take a stroll together! I can swim and was once lifegaurd, so we are safe at the pond.

A suportive partner/spouse is a real blessing. I give thanks every day for mine. We survived raising 4 children, 3 with special needs, one whose hands we held as he passed on to no more pain or hardship, no longer a prisoner to CF.

Funny thing is, this is supposed to be our time, finally for each other. Between me being complicated and his own health finally showing the signs of years of giving and not replenishing, it is not as we expected. Young and dumb only comes around once ya know!

I am reambling, but is alright, praticing for old age. He says matching rockers on the porch, but I insist on matching turbo powered scooters with a fancy paint job.

Limbo, yes. giving up, not happening. will change what i can, accept what unable to change, then find workarounds. will not just survive! THRIVE!

[journeyman]

GOWITH...

Thanks for your comments. Nothing like a flock of ducks. We have a large grocery store where I live. There is a Momma duck and about six little ones. Nobody has told her that she does not own the parking lot. She just pretends she owns it and takes the kids out for a walk through the middle of the traffic.

Everybody stops for her and her brood. Or they go around or turn down a different lane.

A lesson to be learned her. I just go on and pretend that nobody has told me that I have MS and do my thing. Everybody treats me with respect and dignity and lets me in on the game.

It's not so bad being a duck.

Dave, Thanks again. Tampa, Florida
"Journeyman"

[lusciousleaves]

Can I waddle in with you all?

I've had flare up this week, mucho leg weakness and fatigue. I think it's finally clearing up. Whew. Close one. Still no word on those recent tests. I put in another call and am still waiting.

Had a birthday to coordinate and celebrate this week. It went really well. Time to recoup.

Still doing 3x better than in the beginning, even on the bad days.

[minivanmama]

3uph0riabunnyfac3 - Good to see you. I hope your neuro apt went well. Let us know how it went when you can. I hope your son had a good day at pre-k.

I am so sorry that things have been so hard. I hope you get to feeling better soon. I am so glad that you have someone that it here to help and support you. I know that is a big help.

Lots of (((hugs)))

journeyman - Good to see you. You can add me to the list of ducks. They just can't make up there minds what to do with me. So i completely understand. I love the duck story.

It is good to have someone to help and support you. congrats on 41years togethers. That is wonderful.

Lots of (((hugs)))

gowiththeflow - So gald that you are back here. I hope you find a good neuro soon. My neuro is at a theching hospital. He is a good neuro but i do not like his staff.

I have been told that i am complicated so i can understand how frustrating that can be.

I hope you get to feeling better soon. I am glad that you have someone to help and support you. Keep it up and i love the matching scooter idea. Keep on thriving. I love that word.

Lots of (((hugs)))

I have to say that i am happy that my DH is by my side in sickness and i health. He has been by my side throught 3 bad pregnancies,cancer and now limbo with this "ms" stuff. It is good to hear that many have someone to help them and support them. It sure dose make a big difference.

I am feeling like i comeing out of remission. I have been very fatiged,week and my right side feeling numb. I hope that this will pass and start feeling better soon.

Well i am off to bed and i will post the new thread in the morning. Good night limbo island and sweet dreams everyone. Lots of (((hugs))) everyone.