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

[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.

[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

[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.

[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

[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.

[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!