Myelodysplasia Support Group
The myelodysplastic syndromes (formerly known as "preleukemia") are a diverse collection of haematological conditions united by ineffective production of blood cells and varying risks of transformation to acute myelogenous leukemia. Anemia requiring chronic blood transfusion is frequently present. Although not a true malignant neoplasm, MDS is nevertheless classified...
emotional overload moments??!! nah, not me! never, never, never!!! yeah right and denial is not just a river in egypt. lol.
co-morbid conditions s**k. feel your feelings, that's all i can say. don't pen them in - unless penning them in occurs in a journal. :-)
even the best teenage dtrs are enough to make a single mom want to jump ship at times. on the other hand if you are overwhelmed to the point of not being able to cope with your feelings or you are not eating or are overeating, not sleeping or over-sleeping, talk to your doc about this.
i come from a naturopathic background but have no problem turning to prescription meds when they're necessary. for eg., anti-depressants are not "happy pills" as the media portrays them to be. they simply help you cope with the problems you are faced with daily and can also reduce anxiety & irritability. one caveat, if you begin to feel hyper or have racing thoughts, you may be having anti-dep induced bipolar symptoms. stop the anti-deps or add a mood stablilizer (like lithium or depakote). these are all suggestions to take to your doc as you see fit.
take care, marirose
Cnemeti, I feel like I used to be an up and happy person, too, but the ongoing stress really does take a toll, doesn't it? Early on, my daughter and I decided that no matter what, we would find joy in every day. And somehow we have managed to do that. But I do feel that I am a different person than I used to be. In some ways better, in some ways not as good. I am more tolerant and much more accepting of other people's issues, but not as upbeat. There are so many things I use to do that I really enjoyed, but are not not feasible. Even though it's been years now, I still sometimes grieve for the loss of my life as it used to be.
Sorry to hear about your HR issues, and I can understand why you would be angry - your HR person should have informed you, that's their job. But I'm thinking you may need that four month's healing time more than anything else in the world. Don't know anything about Vidaza, but I do hope it helps you.
Healingwise, thanks for your input, too. I also have ongoing vertigo, for 6 years now - inner ear nerve damage. I am on diazepam (lo dosage) to get some control over it. It is an anti-anxiety med, as well, so you'd think that might ease the emotional issues. But it's not at the anti-anxiety dosage, and if I take more I basically sleep all the time. I have just started seeing a counselor at MD Anderson Cancer center again, and she is very helpful.
So, one day at a time. And today is beautiful.
Love to you all!
Anne
I stopped work at the end of October - not really by choice. I am an architect and have had my own business for 10 years, but with the economy the work just completely dried up, and I am no longer able to compete with the young and energetic who can stay up with the technology and work an 80 hour week.
I am definitely feeling better without the stress of working. I have applied for disability, been denied, hired an attorney and am appealing. Apparently this is typical, and the process just takes time.
But I think I may live longer because I have so much less stress now, and fewer demands on my energy. I used to wake up tired, move quickly to exhausted, and by the end of the day was exhausted beyond words. Now I wake up feeling OK, still get tired as the day goes on, but I take a mid-day nap almost every day, and am tired but not exhausted by the evening. Hopefully without your work load you will find yourself feeling better soon.
Anne
Name brand clonazepam, ie.Klonopin can help tremendously with cognitive function too (and seizures); this is not true of the other diazepams. You may want to try to get it if your insurance will let your doc get a prior auth for it.
Also, for the vertigo, my mom and I suffer with that. Meclizine 25 mg from 1-4 times a day (depending on its severity) is very helpful. It works better as a preventative, which isn't to say you shouldn't take it when the vertigo comes on along with heading to bed and a nice, dark room. My mom's is accompanied with nausea but not simultaneously. Meclizine helps in both cases. At first, meclizine made me very tired, but no longer.
Be well. You're in my thoughts as are you all.
Medical advice is just that, a suggestion to speak w/your doctor about.
Unfortunately, the Meclizin doesn't work for me - I can't stay awake more than 20-30 minutes after I take it, then sleep for 4 hours. The type of vertigo I have is not occasional or in discrete episodes, it's most of the day, every day. It's a drag, for sure.
Thanks for the info - it's always good to hear about new options!
A.
You know when I first started using Meclizine in made me extremely tired too, but my body adjusted (rather quickly actually) and now I can take it during the day if I need it.
The Klonopin can help w/vertigo imho. My dtr uses is for epilepsy - trust me things don't get more dizzy or vertigo-ish than epilepsy. Klonopin is the only thing that has helped her. The other thing that has helped my mom and me is an anti-depressant - lowest dose needed for results. I will be switching to St. John's Wort soon (see below) instead of the prescription anti-dep I'm on.
As for dosing, my dtr needs to take .1mg Klon up to 4xday. She also used to sleep w/meclizine, but now she just sleeps b/c she's overwhelmed with chronic illness. ;-) These two meds though have helped her.
St. John's Wort is an excellent herbal anti-depressant. PM me and we can talk more about this. You definitely need to know a few things to go that route and it's not for everyone. I feel so bad that you've been suffering for all these years. Have you suffered any hearing loss? Do you get ringing in your ears? Has anyone suggested that you have Meniere's disease? I know lots about this (integrative medicine and meniere's, so as I said, PM me and we can talk more if you like.
Often a diuretic can help those with vertigo. An herbal diuretic is dandelion - also good for the kidneys (in its leaf form) and liver (in its root form) - which can spare those organs if you're on other heavy duty meds.
These are all suggestions (broken record here). Could assess you better if we talked via PM or IM to let you know if these are ways to go at all. Depending on what else you're on, you may or may not want to mix prescriptions and herbs. No charge to talk to me, btw. Just want to help. ~Marirose
BTW, what diazepam are you on right now and what dose do you take if you don't mind my asking.
OK, this is embarrassing and I feel really clueless here - what is PM, and how do I PM you?
Anne
Perhaps we should start a competition to see how many more meanings we can think of. That might lift the spirits of the MDS crowd!!!!
Love to all
Chris.
On a less racy note, since we are all wordsmiths, we did this with words ending in "ate" - regurgitate, eliminate, fulminate (yes, it's a word) - the rule was it had to have at least 3 syllables. We came up with loads of them and LOL the whole time, especially when we hit on mast**bate! Yeah, the three of us have a great vocabulary! LOL! :-) Marirose
"Laughter truly is the best medicine."
I hope you all will take this in the spirit and was intended and not be offended.
Do you lot across the pond, have any explanation as to why dictionaries, in all languages always open up at master.......ate?
I reckon laughter is the only way to get through MDS, but my friends are not all amused when I make light of it. They think I should be dead serious, but seriously that would make me dead!
Love
Chris.
You rerallly must learn to use your facial organs correctly. Liquids should go in ans out of your mouth,, not your nose.....please!