How do you cope with not working and bringing home the bacon?

[txplumber]

Thursday, July 1, 2010
Doctors visit
I just returned from MD Anderson. My appointment did not go the way I had planned, it was a sucker punch to the kidneys. My immune system has yet to fully develop leaving me vulnerable to infection. A common cold can put me back in the hospital for weeks. I received my second round of vaccinations, six shots in both arms. The doctor explained it in basic terms. My body is like that of a baby just receiving their shots. My body can not yet defend itself. I have more prescriptions to help develop my immune system while also protecting me from infections. The punch to the kidneys came when he told me it would be at least three months before progress is shown. That's ninety days and there is no guarantee that it will be ready than. He sent in a grief counselor who talked to me and tried to prepare me for the fact that in real time I may be looking at 2 years from date of transplant before my body can protect itself and I am able to function properly on a regular basis.

Sitting in my truck in the parking lot my arms went numb from the shots. Than tears rolled down my eyes, I could not stop. I was screaming and punching the dashboard like a madman. My life has been put on pause. How much longer can this go on? I am the house guest you invited over for the weekend that's yet to leave. I am a grown man with intelligence and skills, I am not supposed to be a burden. I asked what would happen if I stop listening to his orders and quit the meds and resume my life. He said that he would not be able to see me. I asked why he said that the last infection I had in October put me in the hospital for 3 weeks. The next infection (Graft Versus Host Disease) would most likely take my life. Dying from the inside out. By the time I felt any pain or showed signs of sickness the infection would have taken control of my body by than there would be little that could be done to reverse it. That's when he brought in the counselor to explain the severity of the situation.

I am still trying to put all this in perspective. The tears stopped (a George Strait CD can be the best medicine sometimes) and now I need to come up with a game plan. I will continue my volunteer work with the Blood Bank, I am scheduled to work the blood drive in Willowbrook tomorrow. I opened my email to find that I have been asked to be the keynote speaker at a meeting for Andarko Petroleum to explain the importance of blood donors. That made me feel pretty good. I might not get paid but I will work at educating and sharing the effects of my disease with others. http://www.facebook.com/home.php?#!/...26178420738609 This is the link to a group page I started on Facebook. Please take a moment to look and maybe become a member. I was sharing information and will begin offering different books and literature on different forms of cancer as well as promoting blood drives. Read some of the entries and if you can, help me share it. There is a discussion section that I welcome people to use. I have amassed a wealth of knowledge over the last few years and obtained excellent information from the University of Texas Medical Library. There is no cost for any reading materials just let me know what you would like and I will mail it to you. If you have reading material that you are no longer using I will gladly take it off your hands. I can share it online as well as find a good home for it by donating it to the MDA library.

This keyboard and you have helped keep my sanity. Not long ago I would be somewhere with a big bottle of Jack Daniels and a cup of ice feeling sorry for myself. Drowning your sorrows doesn't work, I've tried. Those "sorrows" can swim, they will not drown, they keep floating back up, no matter how much Jack you feed them. And Jeiger Bombs just make you stupid. So I sit here and thank God that I am here. This has been a journey not one I would have chosen had I been given the opportunity but it is mine and I must make something productive of it.

Thank you for reading, I needed this.

[Neil Cuadra]

Hi Roger. I'm sorry the long recovery period is so frustrating for you. In the big scheme of things I hope you'll find that getting back to feeling normal again isn't quick but it's worth the wait.

After my wife's transplant she couldn't have visitors in the house unless they wore masks and she was so susceptible to infections that we skipped some of her favorite foods for many months. When we had a salad we washed each lettuce leaf individually. It's definitely not the way you want to live. But when you eventually make it past that stage it sure gives you an appreciation for what you've got.

My wife had to have her "baby shots" too. It's like your body has been reset to zero. She had a reaction to one of the immunizations but the rest went well.

I'm glad you were able to talk to a counselor. Family, friends, and people you talk to over the Internet can listen and sympathize but there's a lot to be said for a professional who can listen in person and make concrete suggestions as they come to understand what's bothering you the most and what you can do about it. I think it would help you to have another talk with the counselor now that you've had more time to think about it.

These diseases do take away a portion of our lives and we are perfectly justified to be angry about that. We just have to make up for it by doing the most we can, at each stage, to live our lives and do what we want. You won't suddenly go from uncured to cured; it's gradual. If you're like most recovering transplant patients, you'll feel a little better each week and month, with occasional slips back, but overall you'll feel more and more like yourself and be more and more confident about your future. You'll reach the point where you can spend an entire day without thinking about MDS because you were occupied with better things. It's a great milestone.

I'm glad to hear that you are volunteering at the Blood Bank and even doing public speaking (a lot of people aren't brave enough to do that) and have a Facebook page along with your blog. When you're being held down by MDS, doing something (anything!) positive can be a great benefit to yourself, not just others, and gives you feelings of purpose and accomplishment. Doing useful work of any kind, especially something related to healthcare or your disease, can turn you toward positive thinking.

It looks like you relocated your blog. Maybe you should update your forum signature to point to http://blog.ihavemds.com/.