Shoutout to our long time but silent forum family

[Lulu54]

I was looking at another old thread and see so many familiar names from the past and that got me wondering again,  What are you up to these days?    I believe many of you lurk here or at least check in once in a while - so would you take a minute and let us know how you are?  

I know I'm  not the only one interested in hearing from you.  ~Laura

[PastorDan]

Coulda sworn I'd already posted this, but regardless, LauraLu's right.  She's not the only one wondering how many of the longtimers are.doing.

[mokibear]

Yup, I'm still lurking but don't get much time these days. I'm working 2 part time jobs so have been on 14 and 21 straight days at times. So being exhausted has become a norm for me.

I'm still undiagnosed and guess I will be for a long time yet. I have other crap health wise going on now with raynaud's syndrome, arthritis and have dropped over 40lbs in the last year. Guess I need to go see a doc again but the one I have is an idiot so if I ever get some time off work will try a clinic in town and see if they'll take me on.

Other then that, just trying to make it through each day best I can. I deal with my symptoms the best that I can and just keep plugging on.

I do think of you all and keep tabs on you when I can. This has always been a wonderful place to be and I do miss it. You are family and without this forum, I doubt that I would have made it through this far without losing what marbles I have left in my head.

Hugs to you all!!!!

[Lulu54]

PD - did you do this in the recent past? I must have missed it.  I try to flush the bushes about every six months or so - I really do like reading these updates.

Moki - always good to see you here.  The weight loss might be a concern - that's a lot if you weren't trying to shed a few pounds.  Time to get rid of the idiot doc and find one with half a brain.  hugs back atcha!

[PastorDan]

No, L, I meant I thought I'd posted a respo se to you earlier tiday, not posted tbe same inquiry before you.had.

[PastorDan]

Hey, moki, goood ro hear fron you too!

[immisceo]

Just wanted to make sure everybody sees this one.

I visited the forum pretty much every day for over two years before I actually started interacting, so there are many names I recognise as MIA who helped me (even though we never talked directly) when it was all so new and confusing.

If you're out there, and even if you don't feel inclined to pipe up, just know your contributions to the community really helped at a time I felt pretty adrift in all this.

Thanks for coming to 'roll call' Moki! Very sorry to hear about your health issues, though. And that insane work schedule! Hope that the other clinic has their act together for you!

[doni54]

Hi Lulu!!

You know I lurk, and still love you and all on this forum.  It is a life saving place for many, and I'm proud to say that I'm one of those.

After the neuro telling me, in 2011,  that he was sure I have MS, just wanted to make sure it wasn't Devic's before he made it official, I actually had hope for the future.

Then get the negative Devic's and go back to see him and he seems to not even know how many lesions I have!!  Forgets about the ON, and the blindness in my right eye....etc., etc., etc.

It was like getting kicked in the stomach.....again......

I'm like Moki, I just deal with life one day at a time, and some days, it's just each hr at a time...haha

I may not ever get a dx, but I am blessed in many other ways, so I always have to be thankful.

My tiny granddaughter reached her 2 year birthday last week and I can remember how we didn't know for months if she was going to get to be here with us.  Now I'm wondering how in the world to keep up with her with my gimpy legs....hahaha

I do miss the forum, and I still hold with the same message I've always had for everyone on here.  Never give up.....life is an adventure...sometimes good....sometimes stinky.....but you have to just keep on keeping on.....hahaha

Love & hugs,
doni

[gooddays]

Hi

It's been a long time since I have written something, even though I lurk everyday.

Last year I went into a deep depression sadly because my dad passed away in a car accident in December 24, 2011.  He was my everything, and I knew that some time or another he would have died because he was 79, I never expected it to be that way or even that day. I even lost 35 lbs.

Now I am going to therapy, and I started to live again.  Still have my ups and downs with the depression and my MS, but I am trying to live one day at a time.

My doctor will see me in September and she would let me know if she would switch me to Tecfidera or I would stay with the Copaxone.  The reason for the switch is because it is getting hard for me with the welts I get from the Copaxone since I am so thin now.

I still live in the Caribbean and believe me the heat and the humidity is killing me, but I try to fight the  fatigue that comes with the weather.

Glad to write back!

Take care everyone!!

[Lulu54]

Doni, we love you too!  Many people here might not know that you were a community leader for a while, kindly being the voice for  the folks in limboland.

It's exciting to hear that sweet baby is now two and thriving - it was so scary for all of you as she struggled those first few months.  

As for you and no dx, that still s ucks.  No other words to describe that.  Thanks for checking in - lots of hugs to you, Laura

[Lulu54]

First let me tell you how sorry I am to hear about your father - there is no way to prepare for such an unexpected end to a treasured life. Grieving is so normal, and I am glad to hear you are getting help to work through this.  

The MS causes enough depression on its own.  

I don't know how you folks who are lucky to live in paradise (the islands) survive the summer heat.  Heat is such an enemy for me I would not function long unless I hung out on the beach all day.

Thanks for giving us that update  - good luck with the switch if the neuro approves it.  Those welts got to me, too.
hugs, Laura

[gooddays]

Thank you for your kind  words, they always help.

As to living in Paradise, the heat and humidity kills us, even when you are at the beach.  Plus in my case, I am not allowed to be in the sun because I developed vitiligo, a skin auto immune disease that may cause skin cancer and other ailments if you are exposed to the sun.  This is a no win situation.

I will try to keep you posted from time to time.

Take care lots of hugs,

Zulma

[Lulu54]

We might just need to have you leave the islands and find a place where you can get outside for fresh air without all those worries. So much for it being paradise.

[LoveMyBostons]

I don't post a whole lot but I do still read the threads.

I've been on Tecfidera since 6/5 and so far so good. I don't miss Copaxone one bit.

It's been a busy summer!

[Lulu54]

thanks for  checking in.  IF you get the time in another few months, would you let us know about your experience with Tecfidera?  we're all curious....

[Mike_Shuswap]

I check in almost every day, but I rarely post.

I've been on Rebif for 3 years now, and my Neuro thinks it's working for me.
Unfortunately, due to balance issues, un-coordination, fatigue, and cog problems I've been unable to work for over 4 years.

To add to the fun of having MS I've recently been dx'd with sleep apnea, as many others on here do, and now use a vpap machine.

Take care everyone

Mike

[beema36]

I hang out here a little each day just to see how all you are doing. Most days just too hard to type or have a conversation. Feel like I know so many of you after all these years and some days you keep me going.

[PastorDan]

Great to hear from so many!  Don't be such strangers!

[Lulu54]

Mike, welcome to the world of sleeping with that blasted mask but it sure does make a difference for me. The morning headaches are gone.

Beema , I'm sorry you have that kind of disconnect with being able to interact and respond.  Its nice to know you check in on us and keep tabs of whats happenening.  Yes, we really do know each other quite a bit!

[hbananas]

Hi!  I saw my neuro this week and complained that the eye pain is unchanged, even though she has tried several different classes of drugs.  I asked her what she thought about botox, and she had a colleague come talk to me for a couple of minutes, and I have an appointment to get 30 injections in September, pending insurance approval.

I complained about my fatigue and how I have had to give up things I love because of it (and cried a little bit) and she has set me up with a sleep doctor.  When I fired my prior neuro, I also fired my sleep doc, because they are the same person.  She mentioned that it almost sounds like I might have narcolepsy, so that should lead to some interesting tests.  I'm seeing the sleep specialist next week.

Oh, and my granddaughter is the most wonderful creature on earth.  She's 4-1/2 months old now.

[gooddays]

Hi again,

Even  though the heat and humidity kills me, I have to endure it because my whole family lives here in Puerto Rico. I hat the humidity and how tire it makes me feel, but this is home!  Plus, even though we do not have winter per se, I get cold during the supposedly winter months.

Thank you again for your kind words, and I promise that I will chip in once in a while.

Hugs and kisses,

Zulma

[Lulu54]

Those grands are sure special and make life a whole lot better!  They also grow up too fast - my oldest is now 8 and going into 3rd grade, which seems impossible.  Botox for the eye pain?  That drug is a miracle one for so many different ailments, and I hope it gets approved for you and it helps.

Zulma, PR is beautiful and I understand the connection with family.  Too bad you can't transplant all of them to someplace cool during the summer months.  I have been there in July and I thought I hadn't ever been any place hotter.

[shoshin]

I do stop by periodically to see how everyone is doing even though I hardly ever manage to post.

My husband and I recently had a lovely outdoor dinner at a local Thai restaurant with Laura and her husband during their recent West Coast travels. It was wonderful to see Laura and meet her husband, who seems to be a very kind, good man. It was also fascinating to hear about Laura's stalwart advocacy for the patient perspective in awarding research grants even when up against a gaggle of scientists stuck in the "same old" mode.

On the MS front, I continue to slowly deteriorate. Recently, I am really struggling with spasms, especially at night when I would really like to sleep. I am also dismayed by how weak my arms are getting. It is disconcerting to see how much a mug of tea wobbles when I bring up to my mouth.

On the potentially positive side, I convinced my neuro to let me try Tecfidera (long story). Although the insurance company then denied it, in a surprise move they caved after the neuro wrote an appeal. I've been taking that since late June with nothing in the way of discernible effects, good or bad, so far.

I am still working, for which I am grateful. We were able to buy a single-story house here, which my husband is fixing up and where I hope we'll be able to say even if I continue on this downward course.

Wishing all of you the best.

sho

[immisceo]

Thanks for everyone who's taken the time to check-in! So glad to know so many of you are looking in even when you aren't piping up (I go through little phases as well).

For all of you going through some challenging times, I've read your stories and felt humbled and hopeful; humbled by what you face and your abilities to cope, and hopeful that 'this too shall pass' and you can either find peace with your 'new normal' or find help (mentally, spiritually, or pharmaceutically) getting that peace.

I think about you all and wish you the best.

[terrics]

The only name I reconize is yours.  Perhaps from another MS forum?