Newbie saying hello

Hi, I am Kevin's MeowMeow but you can call me Robin

[Kj9681]

Hello, Robin!! You're the closest person on the site to me! Awesome!! How are you doing?

[Hidden in reply to Kj9681]

Hi there! I live between Wmbg and Richmond. You're in Hampton Roads? Awesome is right! I am kind of isolated and don't drive much. Have had MS since I was a kid, though back then they said kids didn't get MS. I am 57 now. Sadly widowed. Hope we can talk more! Should I call you Kj or ...?

[Kj9681 in reply to Hidden]

Hey! My name is Kathy. First off, I'm sorry to hear about your hubby. Death is an extremely difficult thing. My condolences.

You're right, it's only fairly recently that I've been seeing the term "pediatric MS" hit the latest and greatest MS magazines. I'm sorry! Geez, that must've been hard! But, you made it! 57...!! No need-n wasting life, we only get ONE! I'll be 35 next week, and where there is a will, there is a way! I'll fight until the casket drops! 😊 Amen.

I just about let isolation get to me too! Jesus woke me up! Good Lord, live!! Would you like to meet for lunch? I'm game. No jokes!

We ALL need somebody.

What do to say?

Kathy

[Hidden in reply to Kj9681]

Hey Kathy! I'd love to meet for lunch. It may take awhile though. My son (who stays with me and is 37!) finally had to scrap his car. He is using my ancient van to work two jobs, so I rarely have access to a car. We are looking for a decent used one though.

Second, I am going through another bout with optic neuritis, and my doc won't let me drive until it resolves. Hopefully soon on both the car and eye, but til then I am stuck in the middle of nowhere.

I am so glad you are a BELIEVER! I am too! I have embraced my faith more solidly that ever before! I pray a lot! The Lord blesses me with so many things. I try to ignore the physical junk, but I get down a lot. Then I turn to the Lord! So glad we are on the same PATH!

Please keep talking to me, and as soon as I am in a better place to meet for lunch, I'll be there. Which part of Hampton Roads do you live in? I am way up 64 between Toano and West Point, used to live in Hampton and worked in Norfolk/Va Beach. I know my way around but don't drive much anymore, and usually only slower back roads. Safer for me and all other drivers that way!

Take good care!

Robin (Kevin's MeowMeow... Kevin was and IS my beloved WoofWoof)

[Kj9681 in reply to Hidden]

Well, I'm on the NN/Hmp border. I know your area...not too far. I'm a road warrior and have no problem with coming to pick you up. Not one single problem!

I'm glad you are a believer too!! I follow Jesus all the while knowing my strength comes only from the Lord!!

So, for sure!! I'd come get you and we can hit the town!!

757-912-5258...

Use it!! 😊

[Hidden in reply to Kj9681]

Wow, this is getting eerie! When I first moved to VA I lived off Mercury near Bethel High School. The area was ok then, haven't been back there for years. Ring any bells? Is that your area?

It is 4 am Friday morning. I got my days and nights mixed up. Had doc appt today and always get upset afterwards, so I slept all evening and got up at midnight.

I am so new to this, and you gave me your phone number... can other people see what we write to each other? I want to and WILL call you as soon as I flip back to a day person, just give me a day.

Hey, if you would really come up here and get lunch with me, I would love it SO much! I never get to go anywhere except doc and vet (kitties and a dog). Are you working or have kids or other responsibilities? My son is dragging his feet to help me find a car, while using MY car every day. I could pay gas and lunch if we could extend a lunch or have a second one to look for a used car along Jefferson. There used to be a lot of second hand lots there. I once had money. Now I am looking for a clunker that will get me around.

What say you? Do you know anything about cars? I sure don't. I keep looking at cars.com and the other auto places on the net, but usually the ones I could afford payments on are snapped up before I can even call!

What can I do for you Kathy? If the car thing is too much for you, I would still like to meet for lunch. Tell me if others can read what we write, and if they can't I'll give you my number. If they can, I will just call you and give it when we talk. I get lost trying to look at profiles, so I don't know if you work or anything about you other than what we have written.

When is a good time to call?

Happy! Finally a friend in you and a Believer too! AMEN!

Robin

[Hidden in reply to Hidden]

PS: You remind me of ME 20 years ago. Road warrior. Used to drive to PA and back at least once a month to see my family. Worked two jobs. Nothing got me down. Very active. What MS? There was a will, so there was a way. I am feeling like the Lord sent your shining light to me! Thank you Kathy! I can't want to meet you!

[Kj9681 in reply to Hidden]

I love it! The Lord does work in mysterious ways! I am yearning for a friend that can understand this whole MS thing. Yes, I'm sure others can see our post, I'm fine with getting your number later. I've decided to focus on only the things I can do...we are able to get things back too...the work is hard, but NOT impossible!

I'm absolutely fine with coming your way. I've been out of work since 2/4/15...I'm an RN. I'm learning to sit down...finally! Yes, single mom of 3 little hands. The oldest is 13, youngest (twins) are 9, all girls.

Call me at anytime...I'm usually up! Sounds like WE need to get you up and out!! It's not time for you to allow MS to wreck havoc...fight!! We are each here for a reason! Can't wait to meet you either! I'm sure that we can arrange visits and field trips at least 2x/wk. This may also help your son to not feel so bad by having to take the car everyday. MS sucks however, we don't!!

No too sure about cars...lol! If it starts, I'm driving!!

Smile!! Talk to you soon, Robin! 🤗

[Hidden in reply to Kj9681]

Better and better! Mom of three young ladies? Lovely! I think you are fibbing a little about learning to sit down! I hope they help you as I know you help them.

I am still upside down but by Tuesday I MUST be back to more normal hours. One of my kitties has surgery scheduled 7:30 am, so I will be up! I don't know when school starts in different areas, but how about we just write when we can til Tuesday, and I will call you then and give you my number. That way if this is your last weekend before school with the girls, I won't take your time or call late. Ok?

A nurse! God Bless you!! Does that make it easier to understand doctors and all the tests? As for me, I had so many jobs over the years because I'd get sick for months and think, I can't go back. But then I would get better, somewhat anyway, and reinvent myself and go back to work. Sometimes I worked 2 or 3 part time jobs at once, until I could find a good full time job. MS made my life interesting for me in many ways. I learned a lot, met a lot of different kinds of people, loved life!

I left a PhD behind in neuropsychology when my first husband was diagnosed with congestive heart failure in his 30's. He couldn't work long hours anymore, and it was far more important to me to be with my family and take over the breadwinning, than to have a graduate degree.

So I wound up teaching. Easy to transfer to teaching handicapped and blind adults, so that's what I did and I loved every minute! As my legs got weaker and fatigue got worse, I had to look for a sit down job. I went into research for a publishing company, then research for a university.

By 2001 I was down to part time. 2002 I made the decision, at 43, to quit work. Fortunately I had good benefits. My first husband, my son's father, had sadly passed away in 1997.

I married my second husband in 2000. He was career Navy, retired and disabled himself. We figured two disabled people can fill in for each other, and I think it worked very well. He continued working part time, and I just stayed home, sometimes volunteered when I felt well enough. Late 2012, I lost my second beloved husband. I get very down and miss him and so many loved ones so much, but I pray every day that the Lord will reunite us all in His Heaven! AMEN!

That's a long enough book for tonight! I am prowling the internet searching for cars. My son thinks he has next Thursday off, so he will take me to look. He knows a little more about cars than I do, but he is kind of bookish, not really mechanically inclined. I'm like you too, if it starts, I'm driving ... back roads ... slowly lol.

Hey, I hope this storm doesn't do damage to us! I am really rural, and we have lost all power for up to two weeks out here! If I disappear from the internet, you know what happened. I still have my cell so I will call Tuesday if that's ok. Now, I am filling gallons of water because our well runs on electricity, so if the power goes, so does everything. Trying to fit in laundry and have a propane grill ready, flashlights etc, I know the drill! I'm exhausted! But I really hope it turns out to be nothing.

Stay happy too! Talk to you very soon Kathy!!

Um, you're not allergic to cats or dogs, are you? My house can be quite furry ...

[Kj9681 in reply to Hidden]

I believe we could talk all day! Yaay!! The girls go back Tues which makes me free for the day! Call me! Perhaps we can meet on Tuesday!! 🤗 Beyond excited!!

[Hidden in reply to Kj9681]

It's a plan! By the time I get back from taking my cat to her surgery, your girls should be off to their first day of school! I am almost back on normal hours, so expect your phone to ring Tuesday morning! Yaay is right! Just think ... we will be talking to and being with someone who doesn't think it's strange if our walking is a little askew or anything else MS deals us. We can be abnormally normal together lol! We'll start our own little club: What MS? club! Yes, beyond excited too! Tuesday then!

[Kj9681 in reply to Hidden]

That what I'm talking about! Totally stoked!

[Hidden in reply to Kj9681]

Oh Dang Kathy, It is 4 am Tuesday morning and I am a mess. My son is taking my poor cat for surgery instead of me driving. I am praying for a good outcome but am very worried. I am in a lot of pain and see the doc Wed morning, again with my son taking me. Afraid my son will get in trouble taking off from his jobs to help me, though they know he is my caretaker. I have your number and if I'm not too much of a mess I will try to call you after I find out if my cat is ok. No, after I find out she IS ok, pray God. I have lost so many people, so many pets in the last few years. I get so down missing them, then pray for our Lord to reunite us ALL, all good souls in Heaven. Pleases forgive me. I am afraid I will lose my new friend before I even get to meet her.

[Kj9681 in reply to Hidden]

Oh, here it is!! Sometimes I lose the post!! It's ok, I get it! 35 on yesterday 😊

Please, don't forget about me, I'm here!

[SherylAnne]

Hi Robin !

[Hidden in reply to SherylAnne]

Hi SherylAnne! I like your name! How are you doing?

[CalfeeChick CommunityAmbassador]

Hi Robin, I'm in CA and just joined today. Diagnosed a month ago. How are you?

[Hidden in reply to CalfeeChick]

Hi Lynn, wish I could say "I'm fine" but you know how it goes. How are you? I've had MS since I was a young child, diagnosed at 22. I'm 57 now. Back then they didn't think kids got MS, so had a rough time until finally diagnosed. Have been on several treatments, am just treating symptoms now. If you have questions about treatments, maybe I can tell you how they worked for me. Or any questions! It would just be nice to say hello and chat sometimes. I am widowed and isolated in the Virginia countryside. My son is my caretaker but he works two jobs and has moved in with me, trying to keep both of us afloat. Lived in AZ for a few years, almost neighbor to you, but moved back to VA after my beloved husband passed. Hope to hear from you again. Take care! Robin

[CalfeeChick CommunityAmbassador in reply to Hidden]

Wow can

[CalfeeChick CommunityAmbassador in reply to Hidden]

Wow can't imagine a lifetime of dealing with MS. I'm just learning about it. I became numb and tingling from ribs down at end of June. It took over a month of ER visit, doctors, xrays, 3 MARk's to get diagnosed.. I know that doesn't sound like a long time to you, but I was so active before and now spend most of my time in a nightgown propped up in bed. Because of my age, 68, UCSF wants to evaluate me and possibly do treatments. First appointment is Sept. 13. I don't really have pain, just discomfort and inconveniences..

Yes, I'd love to hear about your treatments. What works, how quickly, side effects.. I'm trying to get authorized to do fusion treatments of Tsyabri. Anxious to get started with treatments.. Looking forward to hearing from you. Lynn

[Hidden in reply to CalfeeChick]

Hi Lynn! Ah, don't feel bad for me. Life was just a series of getting sick, getting better, repeat. I had a very active life except at times I was numb or had other intrusive symptoms. Depression is my worst symptom, a combination of isolation and losing my beloved husband.

I too sit propped up in bed a lot. Have wheelchairs, scooters, rollators, you name it. But I need help getting them going, and usually am alone. I do "wacky wall walking" ... I hold on to everything my husband set up for me long ago, and can make it slowly around the house and even outside in the yard a little. But I fall a lot and then I get scared. Lots of broken bones and other injuries, and no one around to help. I carry my cell with me when I am on my feet. But usually, like you, propped up in bed. My kitties and my dog keep me good company.

I was on Avonex for years, then I started getting a lot of bad liver problems related to it, so they took me off and started Copaxone. I didn't do well with that. I was on the initial list at UVA when they were first testing Tysabri, It went by a different name at the time, though memory fails me. Then they stopped the testing because they had (not to scare you) too many cases of PML. By the time it went back on the market, my doc and I agreed just to treat the symptoms. My MS has progressed and symptoms fade but never truly go away.

We are on different spectrums of the MS scale! I had it as a child. You didn't get it until you were older. Back in the day they said 20-40 were the years people came down with MS. I am glad they have figured out that it can hit anyone at any age.

Don't run from me when I tell you this: At 42 I found that the drug that took spasticity away, took anxiety away, and made me 95% normal was... medical marijuana. I was in Arizona at the time, so it was legal there. Here in Virginia it is not, so I don't use it. And I fall farther and farther. It really did work for me. Especially strains that did not make me "high". Some strains don't. It was very expensive. But for a while it gave me my active life back and I am so glad I had that life while my husband was still here to enjoy life with me.

Meclazine for dizziness, if you get vertigo ... well, it helps with nausea, but vertigo must just run its course. Knocked me out for hours and made me dopey.

I went through at least 8-10 treatments of solumedol IV steroids. They didn't help at all, and again I got liver damage from them. So no more of that for me. But all these things I tell you vary from person to person. Other people tell me they do well on things I don't, and vice versa. It's a trial and error thing I guess.

Getting late here, doc appt early tomorrow. I hope your appt on the 13th goes well! And I hope to hear from you often!

Take care Lynn!

Robin

[CalfeeChick CommunityAmbassador]

I guess its easier to reply if I put #CalfeeChick in reply, I'm Lynn.

[Sukie427]

Welcome, Robin. So sorry to hear you've joined this club.