I am sitting in a sauna! The waiting room is packed, and hot, and stuffy. Totally gross. I’m paranoid I will get sick from being here. Of course, stomach doc is running late. One down, one to go. Didn’t tell my rheumatologist I haven’t been taking my med. I chickened out! I figure I will see what the blood tests say.
is it just me or has it been especially “depressing” lately?
it seems like everyone is sad. like there is a gray screen over everything. it seems like so many bad things are happening —i keep hearing depressing, gloomy news (because of this i have made an effort to stay away from the news when it’s on and haven’t even been able to read the papers lately). this makes me sad. mostly because i am reminded of what an incredible chore it is to just “be”. not even to “be happy”… that’s a completely different story.
i want to hear something joyful. i want something great to happen to put a big smile on my face. i can’t remember the last time i laughed so hard my stomach hurt. i miss it. i miss feeling excited.
can’t sleep as per usual. trying not to think about the doc appointments i have tomorrow but that seems almost impossible. the anticipation is always the worst. i don’t expect anything groundbreaking, but i am going to get my blood tested to make sure everything is doing ok. i am also seeing my rheumatologist for the first time since i decided to stop taking a medication without telling him. this medication was poison and i decided i didn’t need it any longer. at one point it really helped me, but around three months ago i realized that i may not need it any longer, and it was probably doing more harm than anything (it is a drug that suppresses the immune system to slow it down, it is used for chemo therapy in high doses). i felt like my liver was being overloaded! so, fingers crossed that i am right and i didn’t need it any longer. the answer to this lie in the blood tests.
i really pushed myself to the limit today. did way too much for my body. i try to fit too many things into one day and the end result is me, on the couch, miserable. hmmm, maybe that’s why i am cranky right now? the thing is, i can’t sit still lately. i can’t stand to be home alone (something which i usually LOVE). i am so excited to dive into projects, keep myself busy with the website, painting, drawing, writing, etc.. but lately? being alone with my thoughts is torture. i run out any chance i get and book back to back appointments —and i am running myself down in the process. i do this because i have nowhere else to go to quiet my mind: i can’t walk around because i get too tired, and i have to get home quickly if i feel sick. i hesitate to have anyone over since i am too exhausted to be a “host” (everyone i know works anyway). it’s soooooo frustrating!!! i am hoping this phase passes soon.
we just gotta keep on going.
i am healthy. i am healthy. i am healthy. i am healthy. i am healthy. i am healthy. i am healthy. i am healthy. i am healthy. i am healthy!
Getting ready for my week. I’ve got lots of appointments, including a day up at Columbia on Wednesday. I will be going to see my rheumatologist as well as a stomach doc. I also have the regulars: acupuncture, etc. Acupuncture helps me so so much.
Been feeling physically better. All around just “better”. Focusing on getting my mind together.
Here we go… I will update with news. Good news (hopefully).
Everytime I seem to think I’ve wrapped my head around this whole “healing” thing, I am forced to open my eyes and realize that this is only the beginning, and there is so much more to do. It’s such a strange feeling. I think I am making progress (and I am !) only to get just strong enough to deal with the next set of problems. I am not complaining here, I am simply stunned by this seemingly unreal journey.
I have said the following to a couple of people in my life, and I may have even talked about it here once or twice but here goes: prior to ALL of THIS I remember hearing about someone who had cancer, or “so and so” who wass dealing with MS, a chronic illness, fill in the blank with some other crisis, etc. Of course, I always had sympathy when one hears about another going through a tough time, but I was unprepared for what I call the ripple effect. Not very original name for it, but a solid visual of what has happened in my life since I found out that my Ticker was failing.
About a year ago when I was learning all that was wrong with me and how serious it was at the time, I wasn’t scared. I was slightly numb and just wanted a plan to get things done. I marveled at how easy it could all be if only I could stay “business” about the whole thing, educate myself, and do whatever had to be done. “It’s all biz”, I would say to myself, and attack it like a math problem.
I was sorely mistaken (as I would now find out), because looking back it turns out the hardest things I have had to deal with were not hearing that 70% of my heart was covered in scar tissue, it wasn’t all of the invasive tests, or the Kicker being implanted into my chest. It turns out it would not be consecutive days in bed, or the aches and pains, or losing a lot of my friends, or the dissapointment in many people, or the boring diets and conflicting doctors opinions. NOPE. All of that seems so “easy” compared to this phase of my journey: My mind. The mental aspect of this health trauma turned crisis turned nightmare is larger than anything I have ever known.
As you can see, I am a “thinker”. I will think about and analyze something until I can see the atoms and particles. It’s my nature and I can’t help living in my mind. Combine that with a chronic illness that doesn’t make sense, that is so “Rare” (to quote every medical professional I have seen), and you have a recipe for an unstable person. I read books, google things, visit forums and websites, talk to anyone who’ll have me (doctor or healer or vitamin guy at whole goods), about my condition. The unkown is the worst part. The fact that no one knows what will happen. I thought I had accepted this a long time ago but I don’t think I truly have, because it is the background noise in my world and it has provided the foundation in my brain which has recently become home to terrible thoughts, fears, and sadness. I can’t get away from it. On the outside I seem to look better and better, yet inside my head things are becoming less clear and harder to control.
And so, this is what keeps me in awe. The aftermath of all of the volatile ups and downs that were compacted into one year, and the ONE brain that is expected to process it all and learn how to feel about it, how to act, how to be “OK” . It is so very difficult.
Since I’ve become aware of this, I have tried to be proactively positive -even more so than usual. Affirming myself outloud, doing anything I possibly can to talk myself into lighter territory. I am sure I am not alone in this, that there are many others walking on the same sidewalks I do that feel they are in a constant struggle with their minds. I am wondering. How can we help each other? How can we help ourselves? Is there an answer other than reaching for a bottle of prescription pills? If you think about it, it’s the ultimate philosophical conflict, discussed in literature for ages: man vs. himself. How complex we human beings are. How curious that I can handle physical pain and agony but the intangible fear, rage, and sadness seem to be more crippling and much more capable of destroying the physical self.
Ok, enough waxing philosophical for a Friday night.
This is going to be a pain-free, fun weekend. It has to be. I think I deserve a treat so I am hitting up some agave brownies tomorrow for sure.
xxL
today will be a good day. today will be a good day.today will be a good day. today will be a good day.today will be a good day. today will be a good day.today will be a good day. today will be a good day.today will be a good day. today will be a good day.
i just keep repeating this as i lay in bed because the past week has been a rough one. it’s been really tough, mentally and physically. it seems a feel good today so i will take advantage of that…
