This is who I am... now.

[Kittay]

Hi. My name is Karin. I am 41 soon to be 42. I live in Connecticut. My MS dx was handed to me on 08.18.10 and that was 24 days after I turned 40. Well how do you like that for a 40th birthday gift.

Then on 09.17.11, I had a massive heart attack and almost died. That was a big wow but much easier to deal with than a MS dx. Crazy, I know. But I also know you all know.

I have been running through the 5 stages of grief with this MS dx. I dealt with the denial for about a year. I think now I am jumping around in the stages. Stage 2... Anger. I think we all understand that stage. I cannot begin to tell you the times I say in my head and out to loud to no one in particular... "I just want my life back." Stage 3... Bargaining. I bargain with myself, my doctors and my MS. It's a horrible feeling. I tell my doctor give me 2 more months before I decide if I am going to compromise my immune system further before I take ANY MS medicines. I don't want to take them. I have been researching my life away. Stage 4... Depression. Well, how do you do! This one stinks. My dear, dear husband just told me to get on anti-depressants and I just rolled my eyes at him. Stage 5... Acceptance. That one will be a long time coming until I can figure out the last three!

My Aunt, my mothers sister, has had MS for 46 years and she resigned herself to a wheelchair about 15 years ago without much of a fight. I do not want that to be me.

I currently "eat" (9) supplements daily soon to be (10). I am looking into juicing. I have read quite a bit of information and it seems smart both for my MS and my heart. But giving up dairy... oh, I me some cheese!!

This disease is exhausting... mentally, physically and financially. It is the loneliest place I have ever been in my life. Strangers ask me what is wrong with my leg. REALLY?! I do my best to be polite but one of these days I am not going to be polite and that will be awful because that is not who I am as a person.

I don't really talk with my mom about my MS as it always makes her cry. I do talk to my husband a bit. I really had to one Sunday afternoon as I was SOBBING over a closet full of shoes I can no longer wear! My BFF... I know she means well. She pushes me hard and I tend to shy away from it.

Phew! There. I finally put it out there to strangers to struggle like me. Not me at all! I am such a private person this is shocking to me but I am lost and I need to be found.

Thanks - Karin

[Jules A]

Hey Karin,
Wow you have had an extra hard time of it!

I'm sorry you have to be here but glad you found us because we won't feel like strangers for long.

I guess being able to understand and empathize with the inner workings of this miserable disease breaks down traditional boundaries quickly, sigh.

Hang in there. Jules

[Kittay]

Jules -

Thank you so much for the kind words. It feels good to know that there are many people out there in the same circumstance that I find myself in. Opening myself up is well... very difficult to do but at this rate... what do I have to lose?

It may have been a tough journey over the last 21 months but as my signature says "it is just a new chapter in the book of life" and I truly believe that. Perhaps I am at a place in life to face this head on but not yet ready to accept the dx.

Again thanks for making feel welcome here!

[kif8skip]

Welcome Karin -

Thank you for sharing your story - you sure have been through the gambit! I hope you find your answers and I know you will find a lot of support on these boards.....

It is my BF that has MS and I am here to understand more and support more- my Bf also does not take any medications for the MS other than "Vit D supplements and trying a wee bit with diet and exercise ( soon to be increased! lol)...

Hang in there Karin - you are not alone

[Kittay]

Hi Kat -

Thank you so much. I found this message board the month I was dx but I pretty much ignored it because I was trying to ignore the MS BUT finding myself in such an unhappy place brought me back here and I am glad that it did.

I have changed my diet a lot that is due to both the heart and MS. I have never taken so many supplements in my life! I would be happy to share what I take with you perhaps they might benefit your BF as most of them are taken to help the MS but actually benefit the heart as well.

Exercise isn't always easy but I will be getting a recumbent bike in June and I am SO EXCITED! I used a really top of the line recumbent during my cardio rehab and LOVED it! Me, exercise and the word love have NEVER been in the same sentence so my husband and mom are pulling out all the stops to make sure I get one!

Again, thanks for letting me know I am not alone.

[Cat Mom]

Hi Karin, I'm so sorry that your health has taken such a beating, especially the heart attack. I like your version of the 5 steps of grief, simple and to the point but wish you didn't have to deal with 2 major health crises at the same time. You must find yourself going through the 5 steps in one day sometimes.

I would love to hear about your supplements, the medical world here doesn't give much support for those kinds of things. In fact, I've learned more about MS here than in any doctor's office. I live practically on the doorstep of the "world renound" St. Mike's MS clinic in Toronto, one would think they are supportive of any supplements that ease the symptoms... not! I'm too polite to share the name I call the MS guru I've seen there, but it rhymes with stick... I like my regular neuro waaaaaay better.

If you wouldn't mind sharing what you take and any success youve found with any of them, I would greatly appreciate it.

Please take care, I'm wishing you well.
Jen
ps. I was also dx at 40, 7 years ago. What's up with that?

[LisaL77]

Glad you found us. Your story is a lot like mine.

When people ask me about my walking issues or whatever, I try to answer honestly and kindly because if they asked, they must want to learn. I look at it as an opportunity to educate people about MS. I know it's hard, and I sometimes want to answer snidely, but......

When people stare at my cane, I give them a big smile to let them know it's ok. My canes are very pretty.

Come visit here often. I have found comfort and an open space to talk about MS with people who know exactly what I am talking about.

[hunterd]

WELCOME KARIN!!!! great to have you, but sorry why. my dx came in december, merry christmas! and it was a non returnable gift! please come here often, as everyone is supportive and helpful. good luck.

[rsunde8735]

i just wanted to send 1 masg to you,besides being sorry you have this,you said i think it was your husband that asked to to find out about antidepressant drugs,,my dy put me on them when i lost my son,and a month later ms got me.well i never stopped the drug,2 yrs later, and fromreading about people here,i dont think i want to quit,i am 60 now, still working till i get to 66,if my boss lets me,as dr wont let me go on disability,and i drag my leg too,,take care hope to read more from you

[Kittay]

Hi!

I haven't been ignoring you all. I've just been a bit busy with life! It was nice to come back and see that I am not all alone out here. It does stink why we are all here BUT in my eyes if we weren't then we wouldn't know more kind souls in our lives. Just my thought on it.

rsunde - Thank you! I am crossing my fingers that I will still be working at 60! I admire your courage to keep going.

Kathleen - Thank you! Those "darn" non-refundable gifts! My husband tells me all the time he came with a non-refunable policy!

Lisa - Thank you! Kindness... kill them with kindness, I know. My mom taught me "If you don't have anything nice to say don't say anything at all" ... well if that cliche isn't tested almost daily! I like that you believe people want to learn. I shall hold that close. Thank you.

Jen - Thank you! Ah, 40, it must be something about turning the BIG 4-0! Perhaps that is the age we start paying attention to what our bodies have been yapping at us for years! Some days I do run thru all 5 steps of grief but I really try to take each day as they come. As for the supplements… do they work… I don’t know as I can’t tell what are symptoms versus exacerbations and to be honest I don’t want to know. No need to panic myself more. I did a ton of research before I started taking the supplements and I don’t take the recommend daily amount. I take one of each daily.

B Complex, Calcium with D (I have read that you should also take Magnesium for the calcium absorption) CoQ10 (for the heart), Cranberry, Ester C, Flaxseed Oil*, Lecithin, Olive Oil Leaf, Selenium, Vitamin D and (1) teaspoon Turmeric into a glass of orange juice. *Flaxseed Oil… I was talking to my Chiropractor (I highly recommend it) and he said that the Flaxseed Oil has something called DHA in it and having an auto-immune disease I should be taking DHA in its purest form. With the Flaxseed Oil the body only absorbs about 15% of the DHA and that isn’t enough. So … I ordered DHA. We will see what happens…

As far as Chiropractic care... if your insurance lets you I, personally, say go for it. I sleep better, I walk a little better, I could shave my legs standing the shower!!! I have fewer headaches. Did I mention my Chiropractor is Gluten-Free health nut? LOL! He wants me to change from plastic water bottles to glass or stainless steel as the plastics leech into our body from the water. I can do that. He also wants me to give up caffeine. Not happy about this one but I will give it a whirl. I coffee. LOVE it!

Phew... That's a lot of words!

Many hugs to all -