Where Is Everyone?
 

I'm missing so many folks that used to frequent this forum. I know things change, life throws us some curve balls every now and then and we just plain outgrow things. But I really miss the "old days" where this place was buzzing and there was always something funny going on in spite of the seriousness of MS.

I really hope everyone is OK and just got busy with life.

If you are so inclined please fill us in on what's been happening in your life. Whether you are new here, been here off and on or are a long time member who's just gotten busy with life......we'd love to hear from you and what's been going on in your life.

I can tell you for myself it's not been anything so exciting that I've not been able to find the time to post. Wish that were it! LOL! MS, as all of us who have it know all too well, is not a predictable disease and likes to plan sneak attacks. It can change by the hour. MS Fatigue has been my major obstacle. Obviously it has given me a reprieve this morning but that's not to say I won't be dragging in a couple of hours.

So, I'll put this post out there for anyone who wants to talk about the goings on in their life right now. Hope to hear from lots of folks! :)

Ah, Kitty, we used to be so many on this forum...

I've been doing well...just the usual spasms/cog problems. Went on our annual vacation to Hawaii-didn't want to come back.

We have 5 grand babies now with a sixth on the way...4 of the 5 live out of town. That's okay though...we see them throughout the year.

We love our life, take each day as a gift, and enjoy one another. Life is good:)

Just kicking back and enjoying my retirement and the " golden years ", er, not! LOL

My "golden years" have become a bit tarnished. Not at all what I had in mind. :rolleyes: But....I guess it beats the alternative.

So true Kitty, viewing the grass from the top beats the alternative!

I have one good piece of news to report. My oldest son is getting married in September! :circlelove:

I have been so fatigued lately. I have been sleeping 15-18 hours a day. I am really trying to stay stay awake today.

I'm having one of those kinds of days today, too. Can barely keep my eyes open.

I just took 2 Provigil and fixed myself a cup of coffee. Hoping that will help so I can take a shower later. Those are my big plans for the day!

I was thinking about Sally today, has anyone heard from her? I hope she's doing ok. Didn't she move into assisted living awhile back?

I'm doing ok. I haven't worked since mid-October, and I applied for SSDI and I'm waiting on a response about that.

I'm good for about 2 hours a day, then the rest of the time I pretty much sit in my chair and rest. I sleep 9-10 hours a night. Sometimes I think of trying to work part time but I have so many limiting symptoms that I know that is out of the question.

I wonder if I should try to get Provigil again? When I was taking Vyvanse the insurance denied to cover that. But they all tend to make my blood pressure rise so I don't know about that.

We went out for a nice family dinner on Friday night with our two sons after a nice visit. The whole evening lasted about four hours. I was completely wiped out for two days then. Things like that make me hesitate about working again.

Well it was nice seeing everyone's updates! :grouphug::grouphug:

Yesterday was my birthday. I was born on a most auspicious day in history!

April 11 1954: Most boring day of 2th century - Odd News | newslite.tv

Happy Birthday, Cyn! I hope you did something special. :)

Quite a while back, I PM'd Sally. She was not taking to Assisted Living very well and didn't feel up to posting. I think of her often.


Gerry

Congrats!! How wonderful:hug:

Wiz...so sorry to hear you quit working...you are such an engaging, interesting person.
Your sxs must have gotten the best of you...:hug:
Hope that you can get out and enjoy the springtime...

I should've called the neuro to get provigil before our drive out to Denver tomorrow. I had my nails done today, and fell asleep again as she was grinding the old gel polish off:eek:
I fall asleep so easily...at least until I lie down for bed (at least occasionally). All of the fears and thoughts I ignore during the day come to the fore to bother me. I have been doing some centering "exercises" to quiet the mind. It works occasionally...

I think of Sally often. I hope that if she has passed her daughter lets us know...
she always made me laugh.

Something fun for me. A few years ago I submitted my DNA to 23andme. As an Ashkenasizi Jew whose family fled Russia in 1927, relatives were probably left behind. Many relatives also emigrated to the USA or to other countries in the early 1900's.

It has been interesting to discover cousins. I received a PM from a possible cousin in Ukraine. After a bit of correspondence, he requested my email address to send a possible photo of my grandparents.

He sent me a well known photo of my family that included me when I was three years old with either my grandmother's or grandfather's handwriting on the back with my father's Russian name, previously unknown to me!

It blew my mind! His English is rudimentary so DH is connecting me with a friend/coworker fluent in English and Russian to help Grygoryia and me correspond.

I am still around from time to time, but nowhere near what I used to be. I am just so busy with work, 2nd work, taking care of my mom in the nursing home, etc. I am still working my day job cleaning up environmental messes for the defense department, and a couple of days a week, I teach spinning classes at the gym. I am currently training for the MS150 ride from Houston to Austin weekend after next, and have a 74 mile ride planned for Saturday as a final tuneup before the big day. It will be my 13th MS150, and the 11th since I was diagnosed in 2006. My MRI now says I have "innumerable" lesions, but other than some random fatigue, a few very minor visual issues with heat, and my everpresent hearing issues, I have no physical symptoms to go with them. I am sure at some point the physical side will catch up with what is going on in my brain, but for now I am just making the most out of life and trying to stay fit.

still A R O U N D I S H...and retired!
 

thank you for asking. I was lucky enough to be able to retire....it took about one year and a lot of effort & $$$$ but I insist on living happily and hopefully healthily ever after. :) I'll try to visit more often. I did very much appreciate the early support I received here! no I spend more time on Facebook, linked in, etc...
take care!

TX that is wonderful...you are living life to the fullest!!

Remember the bandana we all signed and you took on one of your rides?! :) Gosh, that was eons ago.....

I still have it, and I take it with me every time I go to a meeting or event where there might be other folks with MS. I think I am up to about 40 signatures on it now and it still rides with me to Austin every year.

That's awesome! :)

I've been busy with my ms being annoying, and then there have been several family illnesses that I had to deal with. One of those is over. My father died friday morning.

I'm going through being diagnosed again, I was trying to get a new neuro, and he wanted fresh mri's, and he made a mention that he was suspecting that it was something else. So, I'm having to get a ton of mri's and other things for that. So annoying.

For those who are concerned about Sally, she's still in a nursing home--and not happy there but there seems to be no alternative just now.

She developed pneumonia a few weeks ago and hasn't been doing well enough to communicate. If I receive any more information, I'll post it here.

I've sent her a note letting her know that people here have been expressing concern and missing her. I'm sure she'll appreciate knowing that she's valued here.

Erin, I am so sorry to hear about the passing of your Dad. I remember how much you talked about him being a nurse and things he used to do. I really am terribly sorry. I hope you're holding up as well as can be expected. Keeping you and your family in my thoughts.

I'm not doing well. I thought I was, but I'm not really. It was a horrible experience, and now that it's over I'm starting to have another kind of horrible experience. Not sure that I can do it.

I'm so sorry for your loss Erin.

It's never easy to lose someone you love. Is there someone you can talk to.....maybe a close friend or relative? Possibly a therapist? Sometimes it's beneficial to just voice your feelings to someone.

How is your Mom doing throughout all of this? I hope you can find someone to talk to......maybe a neutral third party like a therapist would be helpful.

Please let us know how you're doing, Erin. :hug:

Aww Erin...it is so tough to lose our parents, no matter how long they live, and how old we are.

Don't be alone with this...call a help line, or go to a church or a clinic to talk and ask for help.

We who deal with the slings and arrows of MS know how difficult it is to deal with loss. Our minds don't handle stress well...

Keep in touch with us...pm us if you need to talk out of the thread...:hug::hug:

Oh Erin I'm so sorry for your loss. I know sometimes when you talked about your family it and their craziness as all family's have he was the one who seemed to help keep things together. I hope your family is helping you some now and not expecting the impossible from you as they have seemed to in the past. Parents are especially hard to lose but seems even more so when they're life "glue". Let us know how you're holding up, and feel free to have as many whine and cheese sessions as you like they're well earned and deserved.

where is everyone
 

I know I have been missing for awhile. But have been peeking in at times.

Things just have not been going to well. I have agreed to try the new drug that is out now OCREVUS (ocrelizumab)

First week 4hr. infusion 2nd week 4hr infusion then it will be once every six months. But like everyone of these meds you get a little nervous when reading the side effects.

Now just have to wait and see what ins. will do and what other help is out there it costs $65,000 for one infusion. If they don't get me in some kind of program that takes over the price I guess I won't be doing it. Today they took 7 vials of blood for different tests. Will let you know what happens.

Jappy:(

Hi Jappy!

I'm hoping to get on this drug as well. I see my Neurologist at the end of this month and plan to talk to him then about it. My WBC count has been very low since taking Tecfidera.

I hope you'll let us know how you're doing on this new med. It's the first thing that's come along in quite a while that's given us any hope. I pray that it's a winner for you.

Erin - So sorry to hear about the loss of your dad. :hug::hug: I know how much you loved him and how good he was to you. I will keep you in my prayers.

Lots of changes going on with me and I am not at my computer as often as I used to be and use my phone a lot for the internet. It's hard for me to type on my phone and I hate doing so.

Anyhow, I moved in with DD25 and my grandson. It's a temporary thing. I had to move as for whatever reason the violence in the neighborhood I was living increased dramatically. There was a shooting right outside my apartment. That was the 3rd shooting in a month and was the final straw. Since I didn't have much left on my lease, I moved in with DD25 and continued paying on my lease until it was up (April).

It's just crazy living with a 2-year old. OMGoodness! I am amused by the his ridiculous fits, unless they happen in the morning as they're getting ready to leave and I'm still in bed. Those are not amusing. He's now going through the demanding phase and trying to control everything and everyone. He is learning that that doesn't fly with this grandma. The new nighttime ritual is everyone lays in my bed and we read books. He loves this and if it doesn't happen, he is upset. I have been enjoying being around him and DD25. It's been an adjustment as I am used to my quiet ways, which took me a bit to get used to being alone.

I started a new medicine that seems to be working on both the connective tissue disease and the MS. It's been a challenge to get everything figured out and we're still working on it. I still haven't been diagnosed with anything other than some sort of connective tissue disease and MS; although, the neurologist is still unsure about the MS despite having the lesions and symptoms. I love my neurologist and my rheumatologist and they play well together, which is so important to me.

That's my quick rundown. I will try to get better at posting now that things are settling down some for me. I do miss coming on here daily and the fun we all had.:hug::grouphug:

Erin, I'm so sorry about your Dad. :hug:

Life has been busy here.

My kids are almost teenagers now! :eek: My daughter is a Mathlete at school and just went to the Oregon Writing Festival last weekend. She wants to go through all the schooling to work for NASA. One of her teachers just recommended that she go to space camp in the summer. Unfortunately the scholarship applications for this year are already closed, and we can't afford $999 plus travel. But we will most definitely be applying in October for the following summer! I have to say though, I have mixed feelings about sending her. It's an amazing opportunity, but it will be the farthest away from us she has ever been. Now I know a little of how my Mom felt sending me to South Korea when I was in eighth grade.

My son is excited to almost be done with grade school. :) I'm sad that after next year my baby will be in middle school! He's growing so fast and changes his mind regularly about what he wants to be when he grows up, understandable in the fourth grade. At one time recently he wanted to become a doctor to cure disease. He's such a sensitive soul, he just wants to make everything better.

My whole team of doctors has changed. I absolutely adore my new MS specialist. My primary seems very caring, I'm still deciding if she is the right fit for me. The neuromuscular neurologist seemed very caring and helpful at first. But after he got the results of my genetic testing he completely brushed me off. He's trying to tell me that because I have no known genetic mutation, only about 50% of patients have one, and the nature of my attacks I can't possibly have periodic paralysis. But when talking on a support group for PP my attacks are exactly like many of the patients! So I will talk to my primary when I see her next week and see if she can help me.

We're going on a family vacation in two weeks and I can't wait! I know I'll be spending a lot more time resting than I have in the past, but it will be nice to get away!

Oh, Tricia......you have my sympathy! My granddaghter's are 2 1/2 and boy can they ever throw a fit! And scream! I thought my eardrums would burst! I will eventually live with them but I'm just not sure when. The remodeling construction is creeping by very slowly.

I'm so glad you posted. I've been thinking of you and hoping you were OK. I'm glad you moved. You should be safe. I wouldn't want to live in a place I felt unsafe.

Kelly - I cannot imagine having two 2-year olds having tantrums. I think I would end up having one too. :D j/k. Kicker- how did you ever do it?

Nemsmom - Sometimes a change in your team of doctors is great. Although, I'm sorry the neuromuscular doctor has brushed you off a bit. Would going to the ER the next time you have an episode help? If anything, they could document their observations and findings and the reports can be sent to the neuromuscular doctor. Enjoy your vacation!!! :hug:

Well, I've been off for a bit, lost my eldest uncle on Monday to a massive heart attack while he was already in the hospital for an infection of the lining of his lungs. :( So I'll be away for about another week or so, as my mother and i are making the trip to NH for his funeral. Though there has been some good news this past week or so... sorry not even sure what day it is, but I go see a neurosurgeon in about a month now to get my baclofen pump :). My fingers are really crossed it will help, as a few days before the doctor office called me I was sitting down and watched as my ankle jerked sideways and sprained itself. Left me hobbling around for about a week. Just thankful it didn't break itself. :rolleyes:

I am done with this body sometimes, I swear I'm just going to start calling it Linda Blair :p. Rather fitting since the DH decided I might want some make up to wear with the funeral and all, I don't tend to wear any normally, but we went to the store and found what seemed like it might be a light enough shade for foundation of sorts, one of those bb creams....it was... but once it was on, though other than hiding some freckles it didn't change my skin color and yet somehow it looked like I was ready to be laid out in a casket rather than my uncle. It's pretty sad when you have to use baby powder to add color to your face. And worse of all, it doesn't really "wash off" it's one of those that has a redness reducer, so even after scrubbing my face I still look like I belong in a Rob Zombie video. But the other one we got, since the DH knows I have issues finding good foundations, looked like I was going to audition as an Oompa Loompa and it was alabaster, the lightest of the light foundations.

Keep your fingers crossed that the morticians don't try to catch me and toss me into a casket at the funeral service and the groundskeepers at the cemetery don't think I'm some escapee zombie. If you don't hear from me in a week or so it means they probably did, so check the news for warnings about the zombie apocalypse that came to a quick end in Boscawen NH and protect any Irishmen you might know until the hysteria dies down a bit.

**************************************



I taught Emotionally Disturbed Teens and having twins seemed easy next to that.

I was very lucky with kids and loved motherhood and kids were really good, we really had no terrible two moments. Everyone brings and has different experiences and interpretations. Kids will be 26(!!!!) soon. Had worked out life with MS,to a degree but aging (62) attacked and really this aging body and stuff and MS, just a bad mix!!

Starz - I hope you have a nice trip despite the reason for the trip. I hope you start feeling better too.:hug:

Kicker - I'm not crazy about this aging stuff either. It seems that after my last surgery (hysterectomy included), the aging process has rapidly sped up!! My body is not happy not only with MS but other ails as well. Half the time I don't know what is what and when something is wrong, I have no clue what doctor to call.:D You have done very well for yourself and you boys. I have always admired you for accomplishing all that you have despite the MS.:hug:

Made it back yesterday, no zombie apocalypse going on :p. And aside from the reason for it, it was a nice trip, except contracting Lyme disease from a deer tick :(. Not that big a deal since it was caught quickly and I'm on the antibiotics for it now, but still hurts, burns, stabs and aches across my face, neck and shoulder... it bit my ear of all places! Not fun... but going to the fair was so that left things kind of evening out.