questions and how do people deal with this?

[SNOOPY]

You view MS as a curse. No one should take that personally as it's not about anyone else but you.

I do think that people with this curse have a hard time with how I deal with this h3ll

You are not dealing with Multiple Sclerosis, that's obvious by your posts. You have been diagnosed for a year and you are in your mid-thirties, you have a job you love and a boyfriend you love. Do you have any coping skills?

Therapy is usually done one on one with a Psychotherapist, a professional who can help you learn new coping skills and help you view your life in a more realistic way. If you are dealing with depression and anxiety get off the OTC stuff and see a Psychiatrist who can appropriately treat you. There is a very real possibility the OTC things you are using is effecting your mood and making things worse.

There is an awful lot drama in your posts. I don't allow drama into my real life and don't want to deal with it here. For that reason I am stepping away from your posts. I don't believe you are here for help but like the drama you create.

[sarabeach123]

I may one day be open to therapy BUT never a support group. Going in public and admitting I have this curse would be humiliating.

I absolutely agree - I would never participate in group therapy. I am a very private person, and would never feel comfortable opening up in front of a group of people. I also hesitated to get one one one counseling because I thought it would be weird to talk to a stranger. But it actually was very liberating. I still didn't open up about everything in those sessions, which is totally fine. A therapist won't force you to talk about things you don't want to talk about.

My MS is mild like yours and I would be absolutely broken like you if I actually expected to become disabled. But I don't expect it. I am on Tysabri. I have a full-time job and no one at work knows that I have MS. I leave work for an "appointment" once a month and they book me for their last appointments between 3:30 - 4pm. There is a small infusion clinic (nowhere near a hospital) that I go to. They will book me for several visits ahead so I know my schedule months in advance.

Don't let obstacles about work etc, prevent you from choosing absolutely the best treatment. I'm not saying Tysabri is necessarily the best for you, but look at your options.

[gargantua]

Take care of yourself and embrace it, it’s easier on yourself and just to accept, and keep going. You’ll be just fine. 🙂

Initially one of my extreme reactions when diagnosed was that I could now “escape” the other difficult challenges in life, and stop striving. To be able to walk away from all the piling-up problems from the last two years - my job layoff at 53, the sudden death of my only sibling, my aging family needing care. Even some of the obligations within the GOOD challenges, I could just drop… For a few months, MS seemed like the solution to a perfect storm, where I don’t have to be the responsible one or account for my goals. I could just sit back, mope, and be served.

Curiosity and necessity made me learn about MS. Now I look up, and nothing around me has changed. The exact same things are still expected of me. But those old “problems” are now like godsends moving me forward.

Ignorance and denial can be dangerous when we are at our most vulnerable. You call for help, and the internet answers. But it’s important to remember: This forum and its people are very much a part of the real, unchanged world around you - your menagerie of projects and people and creditors and simmering pots and pets who expect you to live.

Here's a quote I've meant to post in the other thread, from a modern “translation” of The Book of Job (Stephen Mitchell)

“The physical body is acknowledged as dust, the personal drama as delusion. It is as if the world we perceive through our senses, that whole gorgeous and terrible pageant, were the breath-thin surface of a bubble, and everything else, inside and outside, is pure radiance. Both suffering and joy come then like a brief reflection, and death like a pin.”

[Ant1981]

Misleading facts

I do think that people with this curse have a hard time with how I deal with this h3ll because they are thinking I am saying their life is worthless. I am not at all. It is like my friend who said a childfree life was worthless and she doesn’t see how anyone can live like that. She knows that I NEVER want kids and have never had a desire for kids. I was not offended at all. I knew she was grieving the “loss” of her life, (she had just found out she can’t have kids of her own). She is still having a hard time dealing….

I may one day be open to therapy BUT never a support group. Going in public and admitting I have this curse would be humiliating. I miscounted and 6 people know. My mom, dad , brother , boyfriend , practice manager , and my old work best friend. I only told my family because I figured they had a right to know why I didn’t want to celebrate birthdays or holidays anymore (any why I was in the hospital for 5 days)



When I get home from work I’ll try to post the stuff I found. I was going to yesterday but yesterday was a horrible day. We had to put my last child hood pet to sleep. I had to go into 100% work mode or I would have broken down and I knew that my mom would have not been OK if she saw me crying. (well she wasn’t OK …. But seeing someone who deals with this kind of thing at work I knew she needed me to “say the right things”….)
It also said most people progess past RRMS within 10? Years. And yes I KNOW dr.google is bad. I had to spend 35 minutes telling someone why they can’t give their dog bleach to drink to kill parvo… I have heard all kinds of crazy stuff from people at work so I know its bad- but like my old work best friend said medical people are the worst because we can ignore the 100% crazy stuff ( like the thing I found that said people with this end up with “locked in” syndrome…)

DAISYCAT not everyone goes to SPMS, you could stay in RRMS for 30 years. Numbers seem to be less and less from converting from RRMS to SPMS these days, In BC Canada there was a study saying about of patients converting and some was without the newer medication or treatment with DMD’s. Take a good DMD, excersize, eat a sensible healthy diet and just go forth with life.


https://mssociety.ca/research-news/a...iple-sclerosis

[Daisycat]

I don’t want to “deal” with this. “Dealing” with this is accepting that I’m never going to have anything to live for and that I’m worthless. And my otc stuff makes me sooo much happier. Before it I really saw no point in anything and now I at least want to finish my bucket list, outlive my dad and my cats. Accepting I’ll never be anything I wanted is depressing but otc stuff numbs the pain.

I am not trying to create drama but if someone thinks it’s drama for how I feel maybe they should even how they feel about their own life... and I have looked at other options but anything that causes immune suppression is out and I can’t remember pills... hormonal birth control was horrible because of the side effects but I could never remember my pills. And drs give me such anxiety that hospital stays are out. I just went to a walk in clinic (very bad sore throat) and they wanted to do further testing because my heart rate was 190 just from being there. Back down to 71 now. I’m open to other options but I have lots of things to consider.

I plan to live as long as my dad and cat is alive. After that I don’t see the point. I don’t want to cause my dad pain and my cat is my everything so I can’t leave her. And the world around me has changed. It’s a cruel and pointless place that really has no purpose but to cause people pain.

And I’m really not trying to offend anyone by my view of a life with this h3”” but I don’t want this. I don’t want yearly mris , I don’t want to take poison, I don’t want people wondering if my forgetting to do something is because I’m becoming a moron, I don’t want to lose my job because I can’t be trusted to care for animals, I don’t want to give up on my promotion I want but I think I’m going to. I’ve had enough disappointment. I was turned down once (technically twice if you count me putting in for a transfer/promotion BUT the hospital had someone there interested and they got first shot. I just can’t handle being told I’m not good enough again.

[Daisycat]

And I am going to ask my neurologist for a different med. I’m sick of the lumps it causes and I only have 3 spots I can use since arms and legs are out since a “bug bite” only works so many times. 1. No immune suppression. 2. Absolutely no overnight hospital stay - a few hours is ok if I can take anxiety meds 3. Prefer no pills since I’m forgetful and I don’t want to have to stop the stuff that’s making life 1% ok. 4. Must have copay assistance. Can’t afford 2000 or more a month: Any suggestions?

[pennstater]

And I am going to ask my neurologist for a different med. I’m sick of the lumps it causes and I only have 3 spots I can use since arms and legs are out since a “bug bite” only works so many times. 1. No immune suppression. 2. Absolutely no overnight hospital stay - a few hours is ok if I can take anxiety meds 3. Prefer no pills since I’m forgetful and I don’t want to have to stop the stuff that’s making life 1% ok. 4. Must have copay assistance. Can’t afford 2000 or more a month: Any suggestions?

Since your list rules out many, do you have a smart phone? If so, set an alarm daily as a reminder for you to take your pills. You can even set multiple per day as a follow up. Just trying to add some type of meds back in for consideration.

[Daisycat]

Actually I’m going to wait to change meds... until I try to prove that this curse was a misdiagnosed mistake. I’ve found 2 things it could be and if I could I prove they actively refused to test me for one of the things and they forced me to live in this misery for a year I will sue them and open my dog rescue and retire. I will not allow them to get away with what they have done to me if this ends up being a misdiagnosis. They have destroyed me and if ends up being a mistake they will pay.

[Daisycat]

I can’t take anything that causes immune suppression because of my job and I’ll die before I spend another night in a hospital. The hair loss I could semi compromise on as long as it’s just “thinning” hair. I can also compromise on the pills as long as I don’t have to take them at the exact same time as I did with birth control. The copay assistance I can’t (this and immune suppression are my two no way at all can I compromise).... I can spend the day at the hospital if needed but a night is a no go. Do most of these drugs have copay assistance? I don’t see how anyone can afford 2000 dollar a month copay if not....

[Seasha]

Yes most all DMT's have co-pay assistance. Under our Medication and Treatment Forum is a sticky thread all about financial assistance with a number to call for each. https://www.msworld.org/forum/showth...ial-Assistance

Once you and your Dr decide on a different treatment, call the company and ask about co-pay assistance. I've read here that many here are on financial assistance.

Good Luck!

[ladybug162]

I guess I’m kind of the opposite of you. I’d rather it be me with MS than someone else. If I could take away your MS I would in an instant. It breaks my heart to hear stories of people suffering with this disease. Or people having difficulties accepting it like you. I completely understand your feelings and you have every right to feel the way that you do. We all process things differently. I just truly wish you wouldn’t give up on your hopes and dreams over something that may or may not ever happen. Why not continue to work towards your dreams now while you are still able? And you know what? You may always be able. I’m so sorry you don’t feel like your life is worth living. I hope things look up soon for you and most of all I hope that you find out you don’t really have MS. Take care of yourself.

[Daisycat]

I looked at that a little just now. I know my Dr wants me to avoid anything immune suppresive (me to... some of the zoonotic stuff we see and can be exposed to sounds nasty) and my main thing is copay assistance.

I pretty much need max amount possible. I have lots of credit card debt from getting my sick cats taken care of and besides that I just don’t see myself being ok with dropping a grand a month for medicine 99% of people don’t need. My other requirements I can be flexiblish with. Oh forgot a requirement... not the one that causes a fatal brain tumor... had the “pleasant “ experience of the hospital messing up my paperwork and letting me go home with paperwork that said I had a fatal brain tumor and this curse. They never could explain the mess up. So maybe that information will help explain my hatred for hospitals. Nothing like thinking you are dying for for 67 hours and 33 minutes.

The discharge nurse just causally mentioned oh you have this (the always fatal tumor)call your pcp for the follow up. So I thought it was nothing.... went home and googled it just to see and I read about how this is one of the most aggressive brain tumors and 6 months is the max people live after discovery....so I’m sorry if my hatred of drs and hospitals offend people, but if I told a client oh hey your dog has xyz and was wrong I would be fired and lose my license. I find it kinda sad that animal care is held to a higher standard of care than humans...

[kittysmith]

you are correct

Kittysmith Nancy Pedrick Mairs used to call herself a "cripple." Her essay on living w/MS is below. She comments that it gives ownership, much like other minorities using a word originally used to denigrate them for empowerment. I also met a young woman in a support group who wasn't able to continue in the ARMY say several times in one evening that her brain was rotting. The University of Stanford found that people w/MS have normal brains, and it is the immunological system that is flawed, which i find more tragic. I also read a book by a woman who said that, after all her attempts to escape her lower class, alcoholic family and become an academic, she was again confronted with the prospect that she was damaged in some way. I could have written those words, after getting two college degrees, a full scholarship, 800+ credit score, and a career, to discover that I was innately broken and that, even with the best outcome, there would be years of worry and heartsickness. I wonder if the hostility towards a fellow MS person is because everyone's "optimism" and "happiness" is equally brittle. We've already lost so much, even if it's just peace of mind, why would we make someone else feel bad, or tell them how to refer to themselves?



https://www.nytimes.com/1987/07/09/garden/hers.html

I was just shocked, as I had not heard that word anywhere except maybe on old TV shows. I was afraid it was hurting others. I have a child with Autism. I am hyper-sensitive to terms, I guess. To me, it seemed like using the word "retard" which is highly offensive. But, sure, if it feels right, say it. I appologize if I hurt anyone with my observations and opinions. That was not my intention at all.

[Daisycat]

I mean what are we talking about when we say XYZ instead of something else…. I can’t think of many things worse than a disease that slowly cripples you and destroys your mind. I am having a hard time accepting it because it has taken my hope for the future and basically my life. I can’t accept that my retirement years will be spend in an assisted living facility where I can’t even bathe myself (assuming I make it to that age) and that I will never achieve anything I wanted for my life.

I have to give up my hopes and dreams because I feel like the biggest loser and pathetic person alive for trying to make something of myself since this disease stops that. I really hope that my 1% hope of this being something else turns out to be true. I do not think I can handle the soul crushing pain it will cause me if it truly is this. The hope that it isn’t and numbing my pain the second I get home is the only way I survive. If that hope is taken away I can honestly say my cat will be the only good thing I have left in my life.


I think I just had my future planned out and knew everything I was going to do. I now know that none of it will happen and know I am only going to destroy my boyfriend’s happiness when I become to disabled to care for myself. He didn’t sign up to be a caretaker and I will not let that happen to him. Once it gets to that point I will leave him and let him find someone he can have a future with. I already told him he was free to talk away anytime and I would not hold it against him. (Well I gave him a year from the time I was told I was cursed)… He has a little over a month.
And I am REALLY not meaning to offend anyone by saying curse but I CANNOT type the actual words. Just reading the actual words makes me feel like my heart (if it was still there) had been ripped out of my chest and I start to cry. It is taking everything I have to not start smoking again. And I probably would if my practice manager didn’t know about my curse. She knows that is why I stopped smoking so… she would probably not be happy. She is actually very supportive about it and asks me on occasion if I am OK, but she never mentions what she is talking about.
Gotta go back to work now…. Saturday is my one long shift and I have to take extra OTC daytime notropics to give me the energy… Again I am sorry if I offend anyone it is not my purpose by typing my thought here is nice because I have no one at all in my life I can talk to.

1. Mom – turns into a jesus talk – I am athest so I do not care to hear that. If there is a god he sure as
@%@# hates me for allowing this curse to happen,.
2.My dad – starts to cry and he has had enough sadness and I will not put him through any more.
3. My boyfriend – I think is in denial about how this curse goes
4. My practice manager – not close enough to really talk to her about it
5. My old work best friend – moved to a different clinic and since he is married I do not think his wife would like me calling and texting all the time. We used to only talk about this at work.

[Daisycat]

I was just shocked, as I had not heard that word anywhere except maybe on old TV shows. I was afraid it was hurting others. I have a child with Autism. I am hyper-sensitive to terms, I guess. To me, it seemed like using the word "retard" which is highly offensive. But, sure, if it feels right, say it. I appologize if I hurt anyone with my observations and opinions. That was not my intention at all.

I’m not trying to offend anyone and if someone can be happy with this curse good for them. I can’t and know I never will be. Each day hurts more than the one before (until I get home and get my meds) the thought of “living” like this and worse devastates me. If I could I would never leave my couch.