Struggling with my long MDS process

[Julianna]

Hi everyone. I havent been here for a while. Trying to put my MDS on the shelf so I can deal with other life issues. But it always comes back to haunt me. Last platelet count 26. The rest a bit under par but ok.

I've just taken part in the MDS Webinar from the AA&MDS organisation. It was really good to put some of my concerns and issues out there. It was really helpful. But I come away still feeling a bit overwhelmed by my disease. My platelets are still low and I'm trying to begin my new career in Animal Care. I keep hurting myself, to the point where I only feel comfortable to wear long pants because of my bruises etc.

And my hands are bruised a bit too. And it makes me FEEL ill just looking at them! Hope I am not coming across too negative but I am young-ish and trying to get on with my life. But I'm tired. And just want my treatment to get over and done with so I can make some kind of future plan.

The family around me still have the "she'll be right!" attitude which makes me feel like a hypochondriac. But I know that I'm not. I have this disease and they dont understand it. Because I can still get out of bed, and do the normal things that people do, like work. Even though, I am too tired often to get to do the fun things I'd like. Does that make sense?

I am sure I am not the only one with these issues. And I'm sorry I havent been around to support others here.

My life is a bit overwhelming in lots of ways... and if life is what you make it, its obviously ALL my own fault!

Thanks for letting me vent. I felt like I had to talk to someone. And I picked you.

Julie

[Rosemary]

Dear Julie,
I know exactly what you mean. The family don't realise what MDS is, and just think you are "a bit under the weather". My husband recently told me that he didn't realise I was sick last year, although I was seeing an oncologist and having blood transfusions! The only thing I can suggest is that you take someone from the family with you to see your oncologist, and show them the blood test results. Let them see the information on the medication you are taking, and all the literature available on MDS.
Also, listen to your body. If you just feel too tired, then don't do something, let the family help out. They keep finding new medications all the time, and there are bone marrow transplants for younger people, so just hang in. It might mean giving up on fun things if you want to keep doing your job, but unfortunately those of us with MDS have to learn to give things up.
If you have a support group, or a country wide association, they are a good source of support and information, and there is the U.S. association which has webinars and information which is very helpful.
It's a good job there is Marrowforums where you can vent! We all need somewhere. Best of luck, Rosemary

[Al's Wife]

Julie,

There are plenty of us here that feel your pain. My husband struggles daily with the fatigue but it is so difficult for him. I too participated in the Webinar today. While I had heard most of it before, it was good to "be" with people who are having similar problems and concerns.
Hang in there and keep the faith. God bless you.
Linda (Al's wife)

[Debbie W]

At the ripe old age of 34 there is nothing wrong with wanting to able to do more. You mentioned there is a donor available, do the docs feel that is a good option in the near future and is that being considered?

Life is partially what you make it, the other part is chance, so please do not blame yourself. Hopefully that remark had more sarcasm in it than I read the first time.

If you feel like venting, there will be someone here to listen

Hugs,
Debbie

[Greg H]

Hey Julie!

I was on the webinar today, too, with you and Linda. It IS good to get stuff out there. I'm glad to hear you have a donor.

The family thing is tough. This is a weird disease that almost no one knows about, so, when you get it, no one knows how serious it is unless you tell them -- unlike, say, lung or breast cancer, which everyone is familiar with. But it's hard to explain how serious it is without worrying about scaring your family -- or sounding like a whiner.

I like to give family members copies of the LLS book on MDS and ask them to read it. When they get to the life expectancy part (even though it's overly pessimistic because it's based on just supportive care) that usually wakes them up to the seriousness of things.

Are you working as a vet or vet tech? or some other kind of animal care?

Hang in there!

Greg

[mausmish]

Hi Julie,

This is always an excellent place to vent. MDS is difficult enough to deal with in middle age and older. Trying to find a balance of how to explain to family and friends without causing too much stress and worry on the one hand but needing their support and understanding on the other is a fine line. When you're as young as you are, it must be all the more difficult! My doctor emphasized that often no one knows what caused the MDS, it was nothing one did or didn't do but simply bad luck. Don't ever blame yourself for being ill.

Big hugs,
Karen

[Julianna]

Thank you so much everyone for listening.

Yeah I have been seeing the transplant Dr for the past few months, who found me a MUD for transplant. Because I had AA and its treatment already they think my MDS will be aggressive as it worsens so are just making sure we are ready for BMT. My Dr seems SO positive about the transplant that now I feel ok about it too. And I'm sure will welcome it with open arms when it happens. It's just the time in-between thats difficult. The waiting for things to get worse.

I really appreciate all of your comments. Thanks so much.

I'm currently studying Animal Studies to be an assistant in any Animal Care Industry I choose. Personally, I love the dogs. I am helping to raise 19 puppies (2 litters) at present. And I really love it.

Thanks again. xx Julie

[Julianna]

I think I will give my family some info to read. And since the webinar (6am this morning for me!) have had a REST day... and don't feel guilty about it. I felt I needed it. Don't care what anyone else thinks!!!!

Thanks for being there, my MDS friends.

[bebop]

Julie I know kind of what you are going thru with family. My dad has mds and I have done so much research on it for myself and stepmom. The rest of the family really have no clue about it. I found one link to get information but not the one I wanted to find for you. There is a place to get free booklets but darn it I can't seem to find it. this one I am giving you has a book you can buy but I think it also has others for free. I hope you can find a way to get your family to understand more of it.

http://www.myelodysplastic-info.com/...asticsyndromes

[Helen Robinson]

Hi Julie

I want to add my voice of encouragement as you cope with your condition. It is bad enough when you are " of a certain age" but you have dreams to fulfil. Keep at it and try and smile and enjoy the animals. The BMT WILL BE SUCCESSFUL.

Best wishes

Helen

[Julianna]

Hi Helen. I think I have spoken with you before. Thanks so much for your encouragement. Nice to talk with another Aussie. Hope u are going ok.

[fibogann]

Originally Posted by Julianna

.... Nice to talk with another Aussie. Hope u are going ok.

Hi Julianna,

Would you mind to let us know whereabouts you are getting treated for MDS in Victoria? I've recently posted some links about the Australian Centre for Blood Diseases where you can get some local info about treatment and clinical studies, research info etc. Thanks.

[Julianna]

Hi there....

I am living in Gippsland but go to the Royal Melbourne Hospital for treatment. Thanks heaps, if u have some links. I'd appreciate that. Julie