Today

[B. Greene]

Thank you to each and everyone. As you know I didn’t post as much after I received my personal message that this wasn’t suppossed to be the place for “emotional caregives” etc. but darn it you are the ones who have been there and pulled me through many a dark day. So the more I thought about it I came to the conculsion that whoever is uncomfortable reading my posts can just avoid them.

Ron as usual is the rock, how he does it is beyond me. The hard part is he told the Dr. not to give up, he bet I would turn up something and that just about finished me because I have no idea of where to go now. I spent most of last night and today trying to check out anything and everything but didn’t come up with much.

Maybe the trial med will be the miracle drug. Just look at Suzanne who is doing absolutely wonderful. As far as the chemo if it weren’t for the gastro problems, that most do not have, we would be in for another round in a minute. I think I have finally found peace with the thought that we did the best we could and don’t have the “if only we had done this or that” to deal with. I will say it was pure hell telling the kids but we will all be there for each other.

We are not giving up we will try something, not sure what but something. I just read a post from a woman who swears shark oil raises plats so maybe we’ll try shark oil and tumeric. Ha.
No matter what tomorrow brings today he looks good and feels pretty good so we will take all of those days we can get and make the most of each one. He finally allowed himself to have a drink of his beloved Jack Daniels and we sat and watched it snow. I know we shouldn’t be home and the Drs. would have a fit if they knew we were but he loves it out here in the woods with his cats so that’s how it’s going to be. I don’t know if I told you but after his hair came back from the last chemo it is so curly you wouldn’t believe it. He who always had hair straight as a string. So, he’s letting it grow and having fun with that.

So, don’t anyone get discouraged keep up the fight. With all the new drugs coming along there is bound to be a cure in the near future.

I told Suzanne this morning I’m sure we are in complete and absolute denial but right now that’s not such a bad place to be.

Love you guys, Barbra

[Bill and Mary]

Denial is not a bad place when it looks bleak. I’m not a particularly religious person but have come to the conclusion that those things that we cannot control just have to be placed in His hands. Once I accepted that the trials seem to be easier.

I think I saw some stuff on shark oil on the AA-MDS aol listserve.

Peace and warm thoughts.

Bill

[Suzanne]

Barbra, You both have always done the very best of being in there investigating alternatives and fighting this disease. Get emotional any time you want! But in the meantime enjoy the Jack Daniels,the snow, the country, the curls and the fact that Ron is feeling well!We are all thinking about you.

[Jimbob]

Barbara,
I don’t know you said “this wasn’t suppossed to be the place for “emotional caregives” etc” but I don’t remeber seeing anything like that from the mds foundation. As far as I am concerned, and I am sure most of the other posters, this is the place to sure imformation andsupport each other in whatever way we can. People have been here for me and we will be here for you and Ron. Here’s hoping you will be able to make memories together for a long tme as Ron gets better.
Jim

[Terri]

Barbara, You have the right approach, You give me courage and strength, and i don’t know who told you not to post, but I cherish each of your words as I know in the back of my mind one day I could be where you are at now. Right now Bob is doing fine, I pray it continues but scared that it won’t. I need to see people like you and Suzanne that do find ways. Believe me You and Ron are in my hearts and I hope you prove the doctors wrong.

God bless you both.

[Carrie]

Barbra,

I’m so sorry that someone made you feel like you couldn’t post here. If that were the case, they should tell me to go away too and I’ll say :rolleyes: . We ALL need each other here (patients and caregivers).

I’m so glad that you’re not giving up!! There has to be a cure somewhere and everyone who tries something new gives us a chance to find that cure.

Love,
Carrie

[sarah]

Barbra, I too am disappointed to hear someone could be so thoughtless and insensitive. I have come to appreciate and admire you and Ron. I think of you both daily, as well as many others I have come to know on forum. I am glad Rons so strong. Keep fighting Ron! Enjoy each day as it comes. Positive attitude has taken each of us a long way. Right now Charlie is doing well. But I also know that could change anyday. We too take things one day at a time and cherish each moment.
Sending prayers your way!
God Bless,
Sarah

[Marsha]

Barbara,

I too am sorry that someone could be so insensitive on this site to tell you not to post. I have learned alot of coping skills from all of you caregivers as well as those who are ill. It has helped me tremendously in the way I have been dealing with this illness. I pray that God will give Ron many many good days and that you two use them well, which sounds like you are. Keep posting cause there are people who care about you and Ron. God Bless

[Neil]

Hi Barbra,
Support comes in various forms. All of us on The Forum have our own niche or means of expressing ourselves. It is an excellent platform to provide each person with the type of support that they feel comfortable.
Over the years you have provided support in several forms. We thank you for that and I think I can speak (write) for many others when I say that we offer you whatever you need at this time.

[Joannie]

Dear Barbara,

I am a little confused, someone actually contacted you and told you not to post because you were a caregiver??? If I am getting that correct, I think that is ridiculous! Many times it is the caregivers who do a lot of the leg work for the loved ones with MDS! The caregivers are trying to be strong for our loved ones and need the forum too, for both information and support and a place to vent! I am sorry someone could have said that to you! I am no longer a caregiver as my dad passed, but I still post from time to time! I care a great deal for the people in this forum and their fight! And if sometimes I am feeling the loss of my parents I know I can find support here. I am still praying that everyone here will be lucky enough to have the benefit of a cure! If someone were to tell me not to post I would think that were a horrible thing to do! Joan

[Donna]

Hi Barbra, I’m outraged that someone sent you that personal email. How dare they!. Caregivers are very important to this forum, we are a team here!. We can learn a lot from each other.

Never give up Barbra, keep doing what you’re doing.
All the best to you and Ron,

Donna

[shirlsgirl]

Hi Barbra,

I can’t believe someone said that!
We’ll always be here for you, whenever you need us. I don’t know what I’d do without the help and support from everyone here.

Jody

[DonUK]

I’ll second everyone’s comments. Whilst I cannot imagine what having MDS is like, I do know that feeling helpless towards your loved ones is very difficult. However, whilst I don’t condone things like that, put it down to the person that PM’d you was having a bad day. We all have ’em, and sometimes we do things we don’t really mean.

[MEG]

Ditto all of the above Barbra. Your contributions here are so very much appreciated & your intellect is respected.

You and Ron are in my prayers.

[Jimbob]

Barbara and all other caregivers:
I shoIuld have said this before. If it wasn’t for our caregivers, most of the patients probably would not be he here. I sure depend upon my wife not only to get me to appointments, track my meds, keep abreast of my changing condition but is the main reason for me to want to go on. I don’t knpw how she does it but I am so thankful that she is here for me.
You are all very important and deserve all the support you can get from here or anywhere else.
Jim

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