Trust me the walking dead have it easy. Die, eat people, avoid getting set on fire. End of story.
The walking ill is a whole subcategory of our population does not get enough press time period. I have officially lost my job and am on disability. While I can function most days, I can’t work. Some days, I can barely walk. The HLH causes “spontaneous” swelling and effusions (fluid collection) in joints and other free spaces and well it hurts! My son timed me from upstairs to downstairs the other day. 10 minutes to make that walk! I used to run over a mile in 10 minutes. I suppose I am the person that disability is for, but that didn’t make the sting of losing my job easier. “We like working with you, but there are no policies that we could keep you here under, so bye-bye.” Like many of you, I spend some more time with my work family some weeks than I do with my biological family. Then there is the seniority loss, no actual job for when I do return. Will I be able to work in that capacity ever again? Would anyone ever hire a healthcare provider who can’t work with acutely ill people? Will we lose our house? You can see where this in addition to being acutely ill with a life threatening illness, preparing for a bone marrow transplant- it messes with you. Walking ill or walking dead? Which is easier? Which is better? Mind tricks that you cannot choose. From this situation, I know that life is not just an attitude. It is NOT just a choice. Depression and anxiety are not a choice. So stick your positive attitude where the sun don’t shine and welcome to my problems. Now, don’t get me wrong, there is the part where I know it could be MUCH, MUCH worse. But seriously. I DID NOT CHOOSE to think about my death constantly. It just happened.
I have been depressed. This was especially apparent during my last hospitalization, but over all, it had been going on for a while. I now like to say I have always had a little shimmer to my silver lining. My clouds hang with grey. They just do. I don’t think that this is a fault of my own. It’s not a fault. It’s like being mad at someone for having a mole or getting gray hair or even being diabetic. There are aspects of it that you can help, but there is a large part that you cannot. And this my friends is a huge misconception in the mental health world and in our culture. I may look like I am hanging in there. That I have my stuff together. I don’t. Sometimes it was everything just to put clothes on. That was my task for the day. And, especially in healthcare, you need to look the “sick” part. I will be the first to admit it. It’s awful. But it’s true. And I could not see it until I lived it. I am an educated person in health care. I am a true believer in treating the whole person. And I could not see this until I was faced directly with it. And now, while I wouldn’t wish this on anyone- ever for any reason (if our dear old government servants)- I feel I have grown in a good way.
I can see the before and after. I can see me before medication (go Zoloft!) and after. I am proud of the progress I have made. I am proud that I can be “me” now. I am willing to focus on the situations that I am presented with; however, I don’t feel that it was this “choice” that I made. I could recognize the symptoms, but I couldn’t do anything about them. I think that is another huge faux-paux. That you can actually control the situation by having a positive attitude, eating well, exercising. You can definitely help your situation, but control it? No way. I have been on a macronutrient diet, exercised, avoided caffeine, alcohol, salt, sugar, carbs, fats, you get the idea. And there is a huge misconception that these behaviors will help you control the situation. To vaccinate, not vaccinate, take medication, not take medication- you can help yourself, but I am sorry you cannot control it. I think one of the most beneficial things I did was turn myself over to a larger being. And it is not always popular to say that anymore. I do not believe that the universe is completely random. It is too perfect, it works too well together in a beautiful orchestra. At least in my mind, it is the balance of the minutiae that supports a God, not an omnipotent presence. But please stop doing yourself the disservice of feeling that you have control. The only thing it bring you is worry. And worry never brought an ounce of happiness (Matthew 7).
Things really got rolling last week. I had been taking chemo to try to dampen my immune system and help keep HLH under control. Fortunately, or unfortunately it depends on how you look at it- chemo does not help me. It makes things much worse. Chemo may have been what caused a huge part of my medical problems in July/August. The bad news- chemo doesn’t work for me. The good news- it reaffirms that BMT is the way to go. So for now, we are managing with steroids. The chemo I did take has caused me a lot of pain and inflammation. So I am hoping to work my way back to where I was before chemo. It seems counter-intuitive, but fortunately I have an excellent online community of HLH survivors that warned me that this may happen, because honestly, Dr. Yoda did not expect it. The knowledge that chemo can make people like me flare was extremely helpful. Otherwise I would have probably ended up at the hospital for an admission and a whole lot of “I don’t knows”.
We will be traveling to Boston in December for my preconditioning treatments and testing. I have a huge slew of testing to go through to determine my health status before I can receive the transplant. Let’s hope that all those things I tried to control (weight, sugar intake, smoking) do REALLY pay off. I feel overall healthy- just this little HLH thing. So we are gearing up for travel time during the holiday season. Not ideal, but what needs to be done. I am hoping to be home for Christmas, but it just may not happen. I am so thankful that kids are already looking forward to a super time with their grandparents and Nana and Poppa. I know it’s not quite the same, but I think they will be happy.
A year has just about passed. Christmas 2016. Wow. I remember thinking as I came down the stairs last year, I wonder what I will be doing next year? Needless to say, this wasn’t it. Regardless, I cannot be too disappointed with my path. I am walking it. I. am. walking. it.
Picture for our elves. Tony- Miley Smiley, Murray Peppermint Cane and Patti Peppermint.
Moving Christmas right along this year!