Monday, May 18, 2015
Every time it is time for an infusion, I get a "this f*cking sucks! why is this my life?" attitude. I hate going, I hate the side effects, I hate getting an IV in my chest, I hate the unknown of the disease, I hate the unknown of the drug. I hate everything about this disease and what comes with it.
Now, I know you are thinking, this is going to be a "woe is me" post. You're wrong. :)
Yes, I have crappy stuff that happens with atypical HUS. Yes, I have a non-curable, extremely rare disease. Yes, I was in multi organ failure 8 months ago. Yes, I will have to get treatment at max every 14 days to keep me alive, for the rest of my life. Yes, it sucks.
I won't lie about those parts.
But what I would like to talk about today is the support groups, the people you meet (in person and via the internet). The people that help you see that you are not alone.
Now, I do have other diseases and I have friends with the same. I'm on support groups for those 2 as well. They are so very helpful and understanding. And I've made some amazing friendships through them.
However, this time, I am discussing the people I have met since being diagnosed with atypical hemolytic uremic syndrome.
Like I said above, I am normally pretty irritated and down when infusion time comes around.
I get my infusions at an oncologist/hematologist's office. They have an infusion room in the back that has about 8-10 recliners where people are getting pumped full of IV drugs. Some people that have crazy, serious side effects. Some are people that are dying. Some are people that are very, very sad. There are the angry people. There are the VERY happy people.
The happy people are who I try to always sit near. Since getting treatment anywhere from every 7 to 14 days for the last 7 months, I have gotten to know a lot of the "regulars" there. Most of the people have cancer and are there for chemotherapy that will make them very ill.
I have seen people have bad reactions to the drugs, people vomit, etc. This type of place isn't for the light hearted.
But today, I noticed something different. I started talking to another regular there. We have met many times and always have a few laughs together. She is completely bald. And has had cancer for THREE years. She's been through almost every type of chemo there is.
She is positive. She makes jokes about her cancer, her treatment, her side effects, the fact that she is bald and she makes people laugh. She more than once has stood up and walked over to someone else (while she is hooked up to an IV and pushing an IV pole), just to give them a high five; rub their back when the nausea comes on; just to tell them they will be ok.
Today, after one of the above happened, she was talking another patient through treatment. was telling her just to breath. To picture happy thoughts. To pray, even if outloud. I've seen her pray over them.
Once she got back to her seat, I asked her, "how do you do this?" "how do you not bust out crying with these people?" "how do you stay strong when you are going through so much?"
Her answer was shocking to me, "you learn more in these type of settings than you will learn from most doctors. You learn that there are others to lean on when you need it. Those that get what you are going through. Those that you pick up while they are down, are the ones that will pick you up when you need it. You have to try to stay positive or these diseases will kill you VERY quickly. The power of prayer and the power of positiveness is the only thing that has gotten me through this for so long. So now I get my treatment and I support others."
I got teary eyed and just said "thank you". What she said was exactly what I needed to hear today. I simply could not do these treatments without my support group.
Hope this helps others too.