Random Thoughts

A forum to talk about the general challenges of daily life with MS.

Random Thoughts

Postby Karazhan » Wed May 20, 2009 12:42 am

***Apparently my family (parents/siblings) thinks MS is something like the flu or a bad kidney infection. They were lovingly by my side in January when everything went down and I got the dx but since mid-Feb., the subject hasn't come up. I avoid mentioning it because it just sounds whiny but I would like to talk about it sometimes with them. It's as if nothing in the family has changed...but in my life, it seems EVERYTHING has changed. I know they care about me so maybe they're just waiting for me to bring it up.

***Will I reach a point when ALL my thoughts aren't about this disease? I'm sure it's perfectly normal to be consumed with something like this for a period of time, it's been 4 months since my dx so I'm thinking, maybe after 6 months or a year, it will become just another part of who I am and I won't dwell on it so much.

***A little consistency would be nice with the Rebif side effects. I'm on week 12 and some days I find the "sweet spot", no sting, no blood and just a small site reaction. Other days I may get a dime-sized spot of dark blood, horrible sting and a large,painful lump that lasts 5-7 days. This mostly occurs when I inject my thighs. Am I maybe getting muscle instead of fat? Also, most days I have hardly any of the flu-like symptoms as long as I take ibuprofin, just a little fatigue but I've had a few injections that made me terribly sick the next morning. I'm Just wondering what the difference is. It's like a coin toss, will this be good shot day or bad shot day.

***One of my first concerns when I found out I have MS (didn't know anything about it), was "Does it affect lifespan?" I read that on average, a person with MS may have a very slightly shorter lifespan (I don't remember the percentage). While that's good to know, it occurred to me that I'm sleeping several more hours per week than I used to due to the MS and/or meds. Add that up over the next 20 years or so and it may as well be a MUCH shorter lifespan. :cry:
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Postby patientx » Wed May 20, 2009 7:38 am

Man, you could have been reading my mind with the first 2 comments. When I was first diagnosed, it was almost like a novelty; members of my family were interested and listened to me. "If you need anything..." Of course, at the time I was having almost no symptoms. Now, they don't even ask about the MS anymore, and if I bring it up, the subject is quickly changed. "So and so twisted her ankle while running, isn't that horrible?" Hello - I have horrible for you. Or the rare times I do discuss it, I get reprimanded for being fearful of the future - "so and so's wife has had MS for years, and she's doing just fine. Why do you think you will progress?" Of course, then I press with questions, like what are her symptoms, what does her MRI look like, etc. That shuts the conversation down pretty quick.

Sorry for the whining - I've been in a pretty crummy mood lately. I guess I shouldn't be too harsh. If I needed a ride to the doctor or hospital, I'm sure I could call on my family. And if things got real bad, I could probably move in with someone in the family.
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Re: Random Thoughts

Postby Bubba » Wed May 20, 2009 8:51 am

Karazhan wrote:
***Will I reach a point when ALL my thoughts aren't about this disease?

:cry:



I too was extremely consumed by the thoughts of the disease. Every waking moment. My Neuro put me on Prozac, I thought, whatever.... He didnt approve of me being consumed with it. I thought, "thats easy for you to say, you dont have it."

So, I figured I would entertain him and try the prozac. It has helped tremendously. I hardly ever think about it now.
As for the Rebif, I suppose I am one of the lucky ones (knock on wood)
who do not experience any symptoms / side effects. Hopefully maybe your system will get used to it and will start tolerating it better.
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Postby catfreak » Wed May 20, 2009 7:18 pm

Karazhan,

I get the same thing, so we must all get it from our family and friends at some point during the disease. My very healthy 27 yr old son did some whining about his back while we were helping them do some ripout for a remodel. I said you should try doing this with MS and see how easy it is.

I don't mean to be crabby, like you say but CRAP! THIS SH*T HURTS.

Then my mom tells me about my poor hypocondriac sister's swollen hands and how bad they hurt her and she won't go to the dR. i Say "suck it up and go to the dr" or shut it up and go away1!! :twisted: :twisted: :twisted: :twisted: :twisted: She always has something wrong and never goes to the DR, just does the self diagnosis thing and has nothing to back it up.
.
You will eventually will not strain your brain on MS 24/7. It will go down to about 12/7 maybe less. But it never ever ever ever ever goes away. not for me anyway. MS is our Cancer and we have to find our way to get through it just like anyone else with a scary disease.

I just love everyone on hear because they all understand no matter how small and meaningless it may seem someone here has been through the experiance and can share their side and their treatment :cry: :cry: No matter how good it worked of if it did not work. We are all family!!! :peace: :peace:

Take care,

CAT :)
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9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby Karazhan » Tue Jun 23, 2009 3:22 am

I called mom last night, here's how the conversation went; We discussed her and dad's current bathroom remodeling project for about 15 minutes, then we talked about our pets and their health issues for about 15-20 minutes. Then I brought up my MS thing (for the first time in several weeks), just wanted to talk about my feelings, fears and symptoms. I said something about feeling dizzy from the heat after a trip to the grocery store. She promptly changed the subject to the weather and fishing. After that topic ended, I told her about how I was stumbling and losing my balance while cleaning out the spare room. Again, she changed the subject immediately, to computer/internet issues. So after that topic ended, I said "Mom, does it make you uncomfortable when I bring up the MS thing?" She said "no, I just think you dwell on it too much." I can't exactly deny that but even if I do, does that mean I shouldn't talk about it....EVER?
Now, mom and I have always been very close and I've always been able to talk to her or even whine to her about anything on my mind. She's a Marie Barone (Everybody Loves Raymond) kind of mom, she absolutely adores her four kids which is why her behavior when I bring up MS is so out of character. Anyway, I have a theory now. Maybe this is just her way of coping with her own pain. Kind of like she's in denial over what's happening to me. Realizing that has given me a little peace of mind.
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Postby Loobie » Tue Jun 23, 2009 3:58 am

If your way of processing this is to verbalize it, then you need to let your family know what you need from them. "Dwelling on it too much" will be a popular place in your life, so they need to understand this. This is more than just an inconvenience, and maybe they don't fully understand that so I'd sit them down and educate them about the stuff you're going through. A lot of our parents took that route; you just don't process things that much. Kind of like the denial you were talking about. I think we all know the dynamic, but they should also hear from you that you need them to get educated to help you through it. Hell, tell them you need just flat need help so you can make an attempt not to be so consumed by it all. It sounds like you've been close with them, but have a Come To Jesus with them and let them know you feel discounted.

That's my two cents.
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Re: Random Thoughts

Postby Karazhan » Tue Jun 23, 2009 4:08 am

Bubba wrote:
So, I figured I would entertain him and try the prozac. It has helped tremendously..


Bubba, I have my own form of prozac. It's called World of Warcraft. When I'm playing that game, my mind is completely engaged and the only diseases I have to worry about can easily be cured by my Shaman. :D
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Re: Random Thoughts

Postby Bubba » Tue Jun 23, 2009 9:25 am

Karazhan wrote: ***A little consistency would be nice with the Rebif side effects. I'm on week 12 and some days I find the "sweet spot", no sting, no blood and just a small site reaction. Other days I may get a dime-sized spot of dark blood, horrible sting and a large,painful lump that lasts 5-7 days.



Are you using the "Rebiject" (auto injector)? If you manually inject, you can control the speed of the medicine flow into your body, an that should eliminate stings and lumps.
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Postby cheerleader » Tue Jun 23, 2009 9:37 am

Karazhan...
We had a similar situation with my husband's mom and dad. They are wonderful, loving human beings. They would also change the subject, and were uncomfortable discussing my husband's symptoms, pain and fatigue. It was very frustrating for him, and he'd just clam up. It made me very angry.

Then they saw Montel Williams on Oprah...and they suddenly "got it". For whatever reason, seeing someone "famous" on the TV, discussing the pain and trauma of living with a chronic illness and contemplating suicide touched them. I'm not a psychologist, and won't even try to understand why it was necessary for them to objectify MS on a screen in order to understand how traumatic it was to their son, but after that broadcast they were understanding and compassionate and let him talk.

I don't think people understand how devastating it is to be in chronic pain, with dizziness and spasms you won't just "get over." MS just doesn't seem real to people, because on the outside you look OK, and pretty much the same. Or it may just be too painful for them to see you suffer and not know how to help.

In any case, I hope you find a way to reach your folks. Maybe see if you can get the Montel interview to them. Glad WOW is a good diversion.
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Re: Random Thoughts

Postby Karazhan » Tue Jun 23, 2009 12:10 pm

Bubba wrote:
Are you using the "Rebiject" (auto injector)? If you manually inject, you can control the speed of the medicine flow into your body, an that should eliminate stings and lumps.


No, I used the auto injector for the first two weeks but I've been doing it manually since then.
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