time for a break

[patti]

Two years ago I found this website when mom was diagnosed with MDS. For six months I read and gleaned as much as I could and then finally posted. I always appreciated being able to ask any question and be fairly assured of getting an answer. When we went looking for information on natural remedies I was able to find little, and what we did get we got from this board by the few brave people who posted about it.

For some reason I thought that chronicalling mom’s experience (both the ups and downs) would be a useful experience for those who came along looking as we did two years ago. I could have never anticipated the hosility that some folks have towards the decision we made for treatment. I’ve appreciated the private emails of folks asking questions they didn’t feel free to ask on the board.

Even rather lengthy, heated debates on touchy subjects which can be useful in the long term scheme of life and be thought provoking at the least, turned into personal attacks on our desire to use and educate folks on the option of natural medicine.

Perhaps a little outspoken on issues, I’m not hostile to another’s choice of treatment. It’s time for me to take a break from this board. Because apparently what I thought would be useful information for future MDS patients is really more then some people can handle.

So I wish you folks the best as you battle this disease. The hostility from some of you who despise our choice rivals that of the doctors we see. We will fight this battle on our own.

Patti

[Terri]

Patti, I hope you will reconsider, Your Input is always appreciated, and We all need each other to share. Recently as you all know Bob was Hospitalized with a slow bleed Subdural in the brain. Surgery not an option due to low plts. While in the hospital and for the week after we did not get his vitamin regimen going like it was and his WBCS skyrocketed to 45 and they put him back on Vidaza Immediately. One thing we found out in the hospital his Clotting factor was low and they gave him a shot of Vitamin K, So off I went to the store after reading your post to buy the brand that you mentioned with the 9 mg of the Vitamin K as I had one but it was another brand which was not enough.
So we all need each other and learn from each other, I do hope you reconsider. Sometimes this disease makes us all irritable and frustrated at times and unfortunately some take it out on others.
I for one look for your input as I hope others take Bob and I’s experience and find it helpful.

[bety]

Patti, I hope your timeout is brief and that you will come back soon. I find your suggestions very helpful and keep referring back to your posts. The mds forum needs you. You must have many supporters that are not vocal but are part of the silent majority. Please reconsider. Terri made some good points. We all indulge in displaced aggression…especially toward close friends and family. Here, we are all friends and family. All the best. Bety

[Engel]

Patty,
When my husband was dx in Jan. 2006 you were the first one I wrote to. I appreciate your opinion more than you can know, plese reconsider about leaving this board we all need you. Not all of us are as knowledgeable on natural remedies as you are, I for one certainly am very grateful for the help and advice I got from your posts. God Bless you and your family and your MIL, she is blessed to have you. Love, Gloria

[TEMBO]

I agree with all the above postings. I know there are many more folks that would agree.

Many Thanks,
Karen

[Billy’s Dad]

…….We need ‘ya Kiddo! Take a deep breath, and climb back on the Cure MDS train.

Bill

[CarolineG]

Patti,

I was going to write to you personally but I would rather just write on here for today. You and I have written back and forth privately for long enough to know that sometimes people need to agree to disagree. We have become the best of friends and yet we are very different from one another. We compliment each other by being diverse.

All of the people on this Forum come from all walks of life. Different cultures, religions, infra-structures….the list goes on. There is one thing that we all have in common and that is that we share a terminal illness whether it be in ourselves or someone we love. Who else would spend as much time as we do sitting at a computer learning about such a morose subject?

There are alot of people on this board who don’t follow your advice. BUT there are alot of people who DO!!!! I, for one, look forward to hearing how your Mother-In-Law is doing and what approach you are currently using. Alot of the things that you describe are not even available to us here in Canada but still it gives me some hope to know what is out there and to have you as a connection.

It is bad enough that so many of the people who I corresponded with when I joined last year do not post anymore because they have either died or their loved one has died and they have moved on. Don’t YOU leave too.

Although everyone had valid points in their political bitchfest, it is time to bury the hatchet and recognize just how lucky we all are that we are ALLOWED to even discuss our feelings regarding government issues without reprecussion. Having a terminal illness in itself is a very horrible thing which provides much confusion, fear and anxiety. We have been lucky enough to be able to find a group of people willing to share their experiences, advice and support. Imagine if we were all in other parts of the world where we would not have this freedom? Imagine the loneliness and despair that we would be feeling? As a group, we need to keep each other. Maybe we don’t have to read each and every post and we sure don’t have to agree with what everyone says, but for Goodness Sakes let us not allow our political views destroy our small group !!!

Patti, you have spoken publicly and personally about the ‘wrestle’ you have practically daily. I know exactly what you go through. Don’t allow any of this to ‘divide and conquer’. A fight is not a fight if you are fighting by yourself.

Think about it, won’t you? I understand how alot of peoples’ feelings over the past few days have been upset. I felt sick just reading all 54 posts. YIKES !!! It made me happy that I am not very politically minded. I feel for all of you who have such strong feelings on matters and end up arguing so vehemently. I’m too shy to get into debates so I can’t relate but I certainly do not want to see any of us walk away from this Forum with ill feelings.

Regardless whether you stay or go Patti, keep in touch with me. I still have those patterns to order.

Blessings,

Caroline

[lucym]

Patti,
I hope you will reconsider. If not I hope you will email me with your updates on your Mom-in-law. Thanks for all your information, I never felt you were pushing me in any directions only trying to help. All the best to you and your family.
Lucy

[chuckk333]

Being new to MDS and the forum, I appreciate seeing and hearing what others are doing and how it affects their lives. Please dont leave. Anyone who doesn’t like what you are saying and doing should just ignore it and get on with what they do.

[Engel]

Patty,
Thank you for your E-mail, still wish you would stay, but I understand and I will keep in touch for information and news of your MIL. I appreciate your opion and if others don’t thats ok this is a free country. Take care. Gloria

[Jimbob]

Patti,
As a caregiver you do not need any additional grief so I can understand your desire to take a break because of hostile responses. I hope the break will not be long but will still be able to refresh you. Many here now and in the future need your input. Maybe you can find a way to ignore those that seem hostile.
Jim

[covergirl]

Patti,
I think its important you stay. Your posts are important to enough people on this forum. Those who do not agree with you can love it or hate it. There is no other place to go to find out about MDS. As the disease affects all differently, different strokes & posts for different folks.

As this forum is about MDS, I ask all to temper your posts regarding politics, personal digs and religion and focus on what’s important – our battle with this disease. Let’s fight MDS, not each other.

Taking it one day at a time,
–cheryl
PS – I did/will not read the 50+ item thread(survey) that started this mess.

[cthomas555]

Patti,

I am glad you will be able to spend more time with your family and as a caregiver, taking care of your M-I-L. I was reading some of the 28l messages you’ve posted this past year and you’ve earned a break. You must be exhausted with your busy schedule.

Chris

[bety]

Dear Patti, Essentially, my full time job is learning about treatments for mds. We all have this in common. The forum is the only place I know of where we can benefit first hand from the experience and knowledge of others who are emotionally involved. I look forward to your posts…Not only have they been enormously helpful, but also provide some sort of security blanket. Until you are ready to return, I would appreciate some contact with you. Come back soon. All the best, Bety

[bety]

Hi Patti,
I hope you will come back soon. I miss your posts and would like feedback on your mil.
Just something I learned from my husband years ago. Arguments are like a ping pong game. If you do not hit the ball back, the argument usually does not escalate. In this case, others kept hitting the ball back (HARD). Friends, I am glad that most of us want this forum focused on our main issue…gleaning from our experiences and gaining valuable information that will help all of us and our loved ones.
I log on to the forum several times per day, hoping to learn something that will help allay my anxieties, help make decisions and help relieve symptoms. I appreciate every post and keep referring back to them. I feel like I am on the receiving end. I wish I were more knowledgeable so that I could contribute more. All the best. Bety

Husband, age 86, RARS pancytopenia, feels well, dozes a little more than usual, very pale (normal complexion ruddy). WBC .9, Hgm 7. plts 99. On aranesp, which does not seem to work anymore. Will probably get his first tx soon. Dx 7/03.

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