newly diagnosed

[AudreyB]

Hi my name is Audrey and i was diagnosed in April with MDS and the problem i am having is when i tell people about it the first thing they ask is am i contagous this disease is hard enough for me to handle but when they say things like that i get really depressed and go through the why me stage has anyone ever had that happen to them also being in the military we have to have a paper trail for everything and now i may not even be able to finish out the rest of my career.

[Phyllis]

See if you can get handouts that describe MDS so that you can inform your "friends" about your syndrome.

Good luck.

Phyllis

[ESeda]

Hi Audrey, welcome to the best place for you to be at this time in your life.

You are going to find lots of family here. We are many and we know what you are going through. There is a lot of information available to help you navigate this decease. Just read as many posts as you can. And if you have specific questions, just ask, there is bound to be someone that can answer it for you.

We all share the fear that goes along with this little known decease. And because it is little known people will ask questions that seem harsh. But that's not their fault, they just have never heard of it before. So don't let that upset you. Inform yourself about the decease so that you can educate them. Along with everything else going on in your life at this time, educating others will not end.

Hopefully you will be able to complete your career and retire with full benefits, you deserve it. Thanks for your service to our country. My wife is the one with MDS and fortunately for us I retired with 20 years. Without the military service I would be in dire straights with little or no health and financial support.

Feel free to contact me anytime and I will help you in everyway I know how.

God Bless
Eli

[Dick S]

Audrey, most people don't know what MDS is, so they may ask if it is contagious. Or when will you be cured.
I just tell them "I have Bone Marrow Failure" which sorta sounds like you don't have something (true in a way) rather than you DO have something. It's also a little easier for them to understand.
Try that on them.

[towncarlady]

I had to see a physician, yesterday for sinus and ear infection. I had to explain to the doctor about my port, chemo, and sadly...I had to tell him what my disorder means.
I do have a good specialist. I am taking dacogen chemotherapy. This is supplemented with Aranesp and Neuprogen as needed. I also have had two series of blood transfusion and one series of platelete infusion.

I have found that it is extremely frustating in not knowing what to expect with virtually no way to have a firm treatment plan.

Best wishes!

[Dick S]

Originally Posted by towncarlady

I have found that it is extremely frustating in not knowing what to expect with virtually no way to have a firm treatment plan.

Best wishes!

I know exactly what you mean. I have been diagnosed since the early part of 2006, but unfortunately I have the slow moving type (MDS). All my numbers, red, white and platlets, drop one or two tenths every four months when I get my blood checked. Problem is, my numbers aren't low enough to trigger some form of treatment. So, I'm in the "watch and wait" mode, trust in my doctors and am forced to suffer with the constant tiredness most of the time. The slower it goes, the longer I live. Thank God I am retired and can rest most of the time, thanks to my wife, but it would be insane for me to wish it would hurry up and progress just so I can get some relief.
Hang in there and we will be talking to you.

[Zoe's Life]

Dick,

I hear you loud and clear. I am only in my 40's, and I hate struggling with the fatigue. Sometimes I wish I had a more aggressive type, then I could do a transplant, and go on, or not. I have to trust that God will continue to provide in the midst of what is basically a chronic disease that makes me tired. But sometimes, I just feel frustrated.

Zoe

[Dick S]

Originally Posted by Zoe's Life

I have to trust that God will continue to provide in the midst of what is basically a chronic disease that makes me tired. But sometimes, I just feel frustrated.

Zoe

It is very very frustrating, but you just have to trudge on, one day at a time.

On a day when you are basically down on your butt, don't you just love the people, who don't know, who say "But you look fine, you don't look sick". Or "When will you get better?". Yeah right! If they only knew what we live with everyday.

[towncarlady]

One of my most dreaded comments is the the one that adresses how good I look. Even makeup can cover up paleness. However, I usually say, Thank you and then respond that my problem is on the inside and doesn't show. I think people mean well, but just don't understand what the problem is. Most people think that I have cancer when chemo is mentioned. Some ask if I will lose my hair. One lady even asked me if I had been given a time limit to live. With so little track record on MDS, who knows that answer.

I just pray that this forum can reach many others. There is no support group in my area. It just helps to know that we are not alone.

Have a great Thanksgiving!

[LynnI]

It is funny how we react to comments and responses from people and how they respond when they see us.

I went through a period when I hated going anywhere, even to the post office because of the shock of my appearance and the comments.

I compete with my dogs and back in the summer before I started taking the VPA and I needed another tx. My husband was kind enough to force me to go watch an agility trial, we even took one of my dogs and my Hub drove me bc I was unable to make such a long drive myself.

There is a woman that doesn't like me, I have known this for years and I am fine with that, not everyone can like each other or get along etc.

So here we are at the trial, sitting there watching when she runs over being very concerned and so terribly NICE, when in the past she wouldn't have said Hello if she had fallen over me.
I sat there being polite but inside very annoyed taking an attitude of 'Don't be nice to me now just because I am sick and look like I am on deaths door.
The interesting thing about it now is the fact that while on the VPA, I am looking and feeling normal, and she has now gone back to being the same way as she was from the past.

I am sure we all feel the same way, we don't want special attention, we don't want pity and we don't want people nor need people to give false sympathies.

When I was dx, I was sent a lovely huge arrangement of flowers to my home and I hated those flowers. It had nothing to do with the person that sent them, I phoned them later and thanked them. I hated those flowers for the simple reason that why did I have to be so sick that anyone felt the need to send me flowers.
And I have decided that I need to send cards, flowers, a short note or a phone call to friends and family when they are well, just letting them know I am thinking of them and appreciate them and not wait until something terrible happens in their lives.......

Ok, done my rant for now

[Chirley]

Hi,

I know where you're coming from. When I first go sick I lost in excess of 40 kgs ( around 88 pounds). I was so thin that I was admitted to the palliative care ward, labelled as having "cachexia" and put on supplemental feeding.

So, why did people at work tell me how good I looked, "now that I lost weight". I had one man tell me that I now looked good enough to be a model. What absolute cheek. How dare they comment on how I look. It has absolutely nothing to do with anyone except family and friends.

I was put on prednisone and have regained a lot of the weight (perhaps a little too much), but now people comment on "how much better I look" and "how well I'm looking". It's really annoying when your Hb is 70, you're tired, short of breath, dizzy, irritable, you're legs don't want to move and seem to have a mind of their own and you have a hypoxic headache. But " you look SOOO much better". The worst part is you have to smile and say "thank you", while all the time you really want to tell them to either "get lost" or "I feel as sick as a dog actually".

Ohhh !!! This feels so good to write down. It's something that I think and then get the guilts that I'm not being a nice person. I am learning that life is being what other people need you to be and not what you feel like being.

I love that cable TV show "Grumpy Old Women"..... I see myself in it all the time.

Chirley