Borderline MDS

[lotusbud]

IF knowledge is power, then uncertainty is - chaos? Fill in.
I had a chat with two of my doctors, and for them it was clear that I indeed have borderline, beginning MDS or mild myelodysplasia.
Go figure. My nerves are frazzled, probably also because of a nasty virus that is going around causing fever, exreme fatigue and sore muscles, but this slow decline in health and debilitating fatigue is not better by not getting a clear diagnosis. Though, reading through the posts here, it seems the disease itself wanes and waxes, and is known to change its form.
So, I will continue to have my blood checked at least once in half a year, and visit my doctors regurlarly or frequently. This board is also very nice, reading through the thoughful care and comfort that strangers offer each other.

[Julianna]

Hi there Lotusbud... I certainly do understand your anguish. I am hanging around with a low platelet count (last count 34), waiting for something to happen before they'll do BMT. It is an extremely painful disease... watching and waiting is so hard. Especially when there is a lot of "I don't know" in our conversations with Doctors.

Take care and I hope you are feeling better soon. Thanks for posting. You're no alone in this.

Jules

[lotusbud]

Hi Jules,
thanks for your kind words. Yes, it seems slow mostly, and exasperating...
I just had time to think that indeed I do not have it, and then bom! the doctor just mentioned it so matter-of-factly. And even called in the other doctor who concurred with the diagnosis!
Was wondering, what is it that you are waiting for before BMT?
Feels wierd to have to wait all the time as so many here do; but it is hard to put it away also - there is always something to remind about it...

[Dick S]

Lotusbud and Julianna, you both just told my story. The waiting and fatique is hell. I for one am sick of it.

[bebop]

I know for my dad he is really feeling the fatigue but he is in the very end stage but he has been tired for a long time now. Good luck to you all!

[Julianna]

Hi again. You asked a good question... and one that I will ask the Doctors again at my next visit on the 2nd of July. I think that while the disease isn't drastically affecting my life, they want me to just LIVE IT, before I need any treatment. And so I am trying to do just that. I have a few things to sort out in my life too at the moment... and don't feel ready for BMT. I need to find a real reason to fight for my life. For me I guess, MDS is a really personal journey of self-discovery. Stepping out of what is behind, and looking toward that which is new. Whatever that may mean.

Jules

[lotusbud]

Hi Jules and Dick and Bebop

I need to find a real reason to fight for my life.

Time and again I was grappling with this. I had two bouts of this disease before, the second time as a student, then the question was simple. Studies became everything. Now the situation is different... My health does affect my life, though CBC is very good - I just feel worn out, deep inside.

they want me to just LIVE IT

Then yes. I started to reach for things that I like and have always liked, and plants was one. So now they are overgrowing me... At least, if you will, I express the trait that has a positive quality - and in gardening, you learn to appreciate time. All last summer I was hauling water and measuring fertilizer to this plant; this year it not only bloomed, but also formed now ripening fruit. The time that goes by and you see nothing happening, that is the important time to take care. This is the reservoir you take from when in crisis - or fruiting...
Perhaps for you it is wind gliding, or becoming active in local hobby club, or joining a motorbike club, or simply cooking an amazing gourmet meal. Simply feeling yourself... Go for it. There is no time like present...

Stepping out of what is behind, and looking toward that which is new.

This is becoming long and winding, but... I have the same feeling at times; imagine, a rocket which is being launched, and as it reaches higher, it will eject the fule tank that is empty and useless. So I have too paired my life down, and concentrated on something while letting other things go.
Good luck for you all, life is a beautiful gift.

[Julianna]

Thanks so much for sharing that with us, Lotusbud. I think what you said made a lot of sense and can really help. You sound a very precious, positive person! Thank you.

Hang in there Dick and Bebop.

xx Jules

[launch]

Lotusbud,

What a Wonderful Message and Reminder to all of us... about Life!!!

Thanks,
Cindy