Pity Party Ended Too Soon

[oncewasKeKe]

Hi Once checking in from Maryland. Been on here several times, but was letting my pity party take me to another level. Well it's been a year since Dx and not sure how me and MS is going to surive.

I'm having to move from my home after 19yrs because my family all believe that one day I'll be coming down the steps and be at the bottom of them. Some days I believe that same. Especailly on the mornings my legs have an on-going argument with my brain.
I'm currently on Copaxane; that is when I can afford the co-pay. Working and having insurance doesn't seem to be a good fit these days. Doctor bills piling up and everybody wants you to go see some type of specialist.

I'v been working since the age of 16 and can't seem to catch a break anywhere. Use to take care of family and friends and they seem to be few and far between. I understand now why some people become homeless. It's either live or live healthy.

Oh my gosh, if I see another Depend I think I will cry. My bladder does new wonderful tricks doin the course of the day and several times during the night. Besides not being able to go into a store by myself, but my Victoria Secret that hasn't seen the daylight for a year is SAD.

Everybody has their issues with MS; and all of them are justified. But sometimes don't you just feel like somebody slappedyou in the face.

Thanks for letting me vent....we all do somedays.

Once was a totally different person

**Post broken into paragraphs by Moderator for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print.**

[kpolk]

I have a probable 95% dx since Thursday, and like you I do not know how we are going to get along.

I wished I could tell you I have been there and can walk you thru it, but I can't. I can only tell you that I am finding all sorts of support here on this forum. And that for me it's going to be one day at a time.

I am literally one month married to a wonderful man, and I am worried how this will all take a toll on my new marriage.

But I will fight this somehow someway, for myself, my husband and my kids and grandson.

You have to fight, for all the above as well. if you give up, that's it, MS wins. Dont do that.

Sending you healing, soft hugs. Keep your chin up hunnie!

[oncewasKeKe]

THANKS EVERYDAY A NEW ADVENTURE IN THE MS LIFE.

[kriscake]

Paddling along in the same boat.

I am so right there with you all. Starting rebif soon and not enjoying what my body is doing right now.

My 2yr old can outrun me right now and the anxiety/depression comes in waves. I think the not knowing how I will be in a year is what gets to me the most. The shots I can handle, the gimpy left side I can handle but the unknown scares me.
Looking forward to getting to know you all!

[hunterd]

WELCOME ONCEWASKEKE!!!!! So glad you're here, but sorry why.
"I'm having to move from my home after 19yrs because my family all believe that one day I'll be coming down the steps and be at the bottom of them. Some days I believe that same. Especailly on the mornings my legs have an on-going argument with my brain.
I'm currently on Copaxane; that is when I can afford the co-pay. Working and having insurance doesn't seem to be a good fit these days. Doctor bills piling up and everybody wants you to go see some type of specialist."

Check with shared solutions about financial help.
They may be able to help you out, as least with the Copaxone.

"Oh my gosh, if I see another Depend I think I will cry. My bladder does new wonderful tricks doin the course of the day and several times during the night. Besides not being able to go into a store by myself, but my Victoria Secret that hasn't seen the daylight for a year is SAD."

I have you seen a urologist? I put off going to one for years, but I finally went, and I am so happy I did! I was in the same boat as you and had reached the end of my rope. He has suggested things that I've tried and it gives me relief for hours.

"Everybody has their issues with MS; and all of them are justified. But sometimes don't you just feel like somebody slappedyou in the face.

Thanks for letting me vent....we all do somedays.

Once was a totally different person"

I used to feel like that until I learned that I had to make adaptions to the ways took to get things done. On a side note to that, I would love to go back to the old way of doing things. You were going to be a different person with or without MS. It just means you're going to have to find new ways to accomplish old things. GOOD LUCK

[twisterred]

oncewasKeKe - Please vent all you want.
Regarding bladder troubles. Have you tried any meds to help?
Catherizing helps, it just takes a different way of looking at solving a problem.

Sometimes family isn't the answer. Are there close friends who can help?

Do you feel moving is in your best interest? Sometimes it's not what we want or used to do, but what is best for you at this moment in life.
(for example, my Christmas tree is now just a small desktop metal tree from Pier One, not the live one I used to have and decorate each year)
I'm sorry you are feeling badly.
Counseling, a really good friend or a trusted church member might help get some of the stress off of your heart.


Kpolk -
Good new, love can deal with anything.
I'm sorry about your diagnosis so early in your marriage.
But maybe, there was a reason for that.

My first flare was within 4 weeks of meeting the man I would mary. That was over 20 years ago and we are still very much in love.

MS does change life plans. There is no escaping that.
But, how your family deals with it as all that really matters.

I heard a speaker once say that it's important to remember MS was ever invited into your home. No one planned for it.

The speaker suggested imagining that MS is its own identity. Even give it a name if that helps. So for example, when dinner doesn't get cooked, you can blame the unwelcome visitor (named whatever), not the person with the condition.

Doing this takes the "blame for the problems" off of the person.

I am so much more relaxed and flexible than I used to be. If something is not the way I used to do things, I now blame incómodo (spanish for "unwelcome").

[New normal]

Thank you all for your posts...
Twittered sister...well, with auto correct that 's what "twisted sister" comes out... I am leaving it cuz it made me laugh..

Sister...(that's easier) you have such wisdom, and you always respond to everyone. You don't think "out of the box" you think "out of yourself" ... What a strength! Plus you take the time to share.... I really value your posts each time I see them!

Keke...I so relate to what you are experiencing....I lost myself in the last year...I walk by my motorcycle in the garage with its butterflies and roses and wonder where the person went who rode it less than a year ago.

I had to use a cane in public last week....I have such bad tremors..now carry it with me since I cannot predict what any day will bring....

But that is why my "handle" is "new normal" since I figure adaptation is the rule of the game....the last few months I have been thinking of trading my bike for a trike...sounds silly to anyone who does not hv a passion for adrenaline, air flowing in one's face, and a connection to the world like no other..but, I digress.

I am deteriorating so fast, with no dx in sight and the dream of a trike is getting dimmer....SOOOOO, I am dreaming a bit more about kayaking even tho I don't have strength to "launch" my ship, I suppose.....SOOOOOOO, I am dreaming about giving my famous "war hoot" at my grandchildrens sporting events, even tho riding in a car gives me body pain....SOOOOOO, I dream each day to try to be the best companion I can to my DH......

I no longer search for myself, Keke, cuz I am accepting I don't have to look very far...I am right here...whatever it is for the day, my NEW normal....what I do with whatever I am at the moment is who I am....and I realize I am the ONLY one who can determine that...no medicine, no therapist, no friend, no relative...as "pop eye" says, "I yam what I yam" .(for those old enuf to remember him) or rather, "it is what it is"

Brevity is NOT my virtue....but my intentions are pure. Thoughts and prayers are with u all. I gain so much strength from you who are ahead of me on the path...thanks for your efforts to try to make the journey easier for the rest of us.