I want a break :(

[FinLady]

I want a break. I want a break of knowing I have MS each and every day. Each day is different for me from the grab bag of symptoms - so it makes sure I never am able to forget. Feeling like a "whack-a-mole" some days.

Also have some worsening of symptoms that need to be called into the neuro after the holiday. I feel like a hypochondriac sometimes for calling so often. Before this disease, I called a doctor for something other than a physical maybe once every few years. :(

But in a lot of pain, and despite doing all the "right" stuff to help with spacticity - it is getting worse and worse. :Sigh::paperbag: I hate, hate complaining - so try my best to push on through everything. Just some days I want to crawl under a rock and stay there. :(

Need some cheese for this whine. Maybe some gouda :)

Thanks for the vent. :grouphug::grouphug:

[Dejibo]

me too! :p

I am sick of this everyday is a new day full of challenges, and struggles, and watching dreams evaporate!

I was supposed to retire early and travel! now I am stuck at home, playing the merry-go-round of symptoms! I am sick of shots, and sick of having to tell my friends "sorry, too hot for me"

I just want a long weekend that I can zip out of bed, shower, and get on with my day. laugh, cry, BBQ, hang out, and not have to worry about how hot its going to be. Will the car ride be long to get there? Did I bring my meds? Will I have to lay down in the AC car while others play on the beach? Shesh! enough already.

[Twinkletoes]

Fin, did you ever watch "What About Bob?"

His therapist prescribes a vacation for him from his illness. And it worked!

Of course, if you've seen the movie, you know that Bob is a hypochrondriac. But wouldn't it be nice to get a well-deserved break from MS every so often? Or permanently? *sigh

Best wishes, Fin. :hug: Tell us what the doc says, k?

[Natalie8]

Fin I'm sorry you are having one of those "I wish I didn't have MS" days. They are the pits. I'm having one too--maybe because today is the second anniversary of my diagnosis, I was supposed to go the movies tonight with a friend and I feel too tired and the cognitive stuff was especially bad this week and that really scares me. I know what you mean about all of the doctors visits. I also only went every couple of years until the MS came along. Now I feel like I spend all my time in waiting rooms and worrying about health stuff. I think you definitely have the right to whine and have a pity party! Maybe it's cathartic and necessary. I am hoping you feel better soon. :hug::hug::hug:

[SallyC]

(((((((((Fin)))))))))....I'm not nuts about Gouda, but I'll take a large caraff of the Wine, please.:)

The vacation thingy is a great idea....but, with diseases like MS, you can run, but you can't hide..:mad:

Feel Better Soon Please..:circlelove:

[karousel]

:hug: I hope you can find a few hours to relax and do/find something you can enjoy, even if it isn't MS free. :hug:

[hollym]

I remember a few years back when I was in that spot. I honestly never thought that it was ever going to be OK. I could hardly walk even with a cane. My neuro was suggesting disability and a rollator and heck, why not a scooter, too. I was so freaked out because it was a very rapid and constant decline. I stayed that bad for awhile, too. It was at least 2 years. I had one neuro convinced I was PPMS.

I don't know whether it was the pulsed IVSM every few months for two years, or all the tweaking of the Baclofen dosage, or divine intervention, or a two year long flare, but I am so much better. I don't even use the cane anymore, but can't really walk long distances or keep up with normal walking speed. I do have other reminders every day. I'm still quite spastic, get fatigued, don't handle the heat well, and my eyes are still screwy, but when I remember back to the beginning, I see the change.

Could you be in a flare? Have you ever done the IVSM - I don't remember? It could be beneficial. I couldn't believe the difference after my first infusion. It took a couple weeks, but one day I realized that I didn't feel as awful.

[FinLady]

It's possible I'm at the start of the flare. My eye doc found some inflammation in my eye and doing steroid drops with that, and seems to be helping those issues.

Never been in pain like this before and was up into the wee hours last night, pain meds wouldn't touch it which convinced me it was time to call the neuro. And it was tylenol PM and still couldn't get to sleep quickly or stay asleep. :eek:

Never have been on IVSM. My neuro doesn't believe in prescribing it for sensory symptoms (which is most of mine) unless there's an active leison. Never had one come up under contrast. Even with flares every three months during the dx process, the new ones they found were already "old". :( (which is another concern of his, but that's another rant - LOL!)

Thanks everyone for listening!!! You are the best!!! :grouphug::grouphug:

[Lady]

Hi Finlady,

I'm sorry to hear that you are in that much pain, whine away, we all do.

Do you have medication for spasticity? Or just pain medications for general pain? There is a difference. Maybe discuss this with your Neuro. If you feel you are in a flare, ask him if he thinks you are.

If you are not happy with this doctor or his treatment plan you can always change. You don't have to feel like you don't have any control over your symptoms, you do.

I wish you good luck on Monday's appointment with the Neuro. I hope you get to have the pain treated correctly.

No one should be in that much pain when there are things that can be done to help.
Feel better soon.:hug:

[pud's friend]

Sorry to hear you're feeling so irritated by things.

I had some lovely advice from a fellow ms'er. Make like a cat.

Both he and I had taken in strays (him) and holiday home orphans (me). and his best philosophy was to live like a cat. Why worry, there'll be food, warmth, love from their person, a bed to snuggle on, the odd passing mouse and no worries beyond what is happening right now for the instant that they are awake. You get the idea... He wrote me a lovely piece - I'll try dig it up.
I love the whole cat philosophy. It's how I like to spend my time.
and that's coming from a girl who 'hates cats' ! yeah, right.

[kicker]

I like cheese and whine. A little wine is good my PCP told me. In moderation. (((Finlady)))

[joellelee2000]

I'm sorry you're feeling so crappy Fin :hug:. I find myself wishing for just one day to be MS free.

The IVSM really helps me. Maybe your neuro can be persuaded into letting you try it? I hope you have some better days ahead :).

[barb02]

Hey Jenn, Sorry to hear that you are having such a rough time. I hope you are able to get an appointment soon. Have you tried baclofen? It does seem to help me a bit with spasms and pain. I am still stiff, but experience less pain unless I try to do more than normal. Hang in there!:hug::hug::hug:

[FinLady]

Pud's Friend, that's a pretty good saying. We have two cats, and my hubby jokes that if he has to come back, it will be as a cat :D

Barb, I'm on two other anti spamatics for internal stuff so he wanted to wait before adding that sucker to the mix. We have talked about it, and I agreed with him with the strange issues I have with meds sometimes. :rolleyes: Definitely willing to try it now, lol!

Everyone, thanks again for the hugs and listening! Pain's still there, but the burden on my heart and emotions are much easier to deal with today. :grouphug::grouphug:

[ewizabeth]

Fin... :hug: :hug: Sometimes a hug helps.

[PolarExpress]

(((((Jen)))))
I'm sure everyone here can relate. Doesn't make it any better, but at least you're not alone! I hope the pain lightens up soon.
Pud's Friend, as a person owned by four cats, I've always said if there's such a thing as reincarnation, I wanna come back as a spoiled house cat. No matter what's going on, no worries. They're very zen :)..

[Twinkletoes]

Cats DO have it good, no doubt, but...

I've always said I wanted to come back as my husband's dog. He gets 10X the attention that I do! :D

[kicker]

Cats DO have it good, no doubt, but...

I've always said I wanted to come back as my husband's dog. He gets 10X the attention that I do! :D
**********

What is it with men and dogs???? Unconditional love and dropping food on the floor is a good thing? (usually not so with a wife)

[soxmom]

I hope you are feeling a bit better this morn.:hug:

[FinLady]

Waiting for the neuro's office to call back. Left a message with my favorite assistant - she's a hoot. :)

Running on four hours of sleep right now :( so hoping he gets back to me soon.

[hollym]

Jenn - I do not consider spasticity a sensory sx. It can greatly affect walking, sleeping, sitting, ADL's, etc. It might be worth a try to persuade your neuro to let you try IVSM just this one time to see if it helps. It could help calm down a lot of things all at once like the internal stuff, too.

[sabimax]

hey Fin,
HUGSSSSSSSSSSSSSSSSS many HUGSSSSSSSSSSSSSSSSSss

you describe how I feel too some days, just sometimes these sxs are too much. I am undx and that part makes it hard too, as I do not call drs much... and just push on and on....

good luck with the neuro office call!! Hoping you have some better sleep nights and better days.. hugssss sorry you are hurting... luv and hugs, sarah

[SallyC]

((((((Finlady))))))...There are days I just hate living with this disease. It STINKS!!!!!:mad:

[FinLady]

Holly, I'm in enough pain I'm willing to do the IVSM without seeing anyone. I'm usually not that way, LOL! If they suggest it, I'm a going! It's been maddening. :Crazy 2:

Sally, I agree :hug::hug:

Sarah, :hug::hug:

[FinLady]

I'll see him tomorrow around 4. They had an unbelievable cancellation and squeezed me in. :eek:

[FinLady]

UPDATE:

I believe the phrase that comes to mind is...be careful what you wish for....

Saw the neuro and have some blood tests scheduled for tomorrow. He wants to rule out some nastier things, but he thinks that from the way it's presenting itself the pain might be Fibro. :eek::confused:

He did prescribe baclafon for now in hopes that it will help me with the pain. After the results come back, next plan of attack will come.

:grouphug::grouphug: