call it what you want.

March 24, 2012

i’m having a dream where i’m at a party and i start helping the cater waiters clean up the table because i have decided that i hate the bougie hosts (writing the word, bougie, feels so much more uncomfortable than saying it) and i would rather clean up their mess than participate in making it. yeah, the dream premise is a little lackluster and too realistic. i move seamlessly from stacking some dirty plates to realizing that i’m actually awake and i feel like shit. my body feels like a compressed, rusted, coiled spring. i think i’m going to vomit. my head feels like last night faded to black out around the time i started to fall off the bar stool, laughing my way out of last call. only, this isn’t a hangover. i haven’t had a drink in almost five years. this is a drugover of a completely different beast. what’s my first formulated thought? this is probably a good day. make the most of it. i thought this without self-pity, but with genuine acceptance… today. i’m not gonna play as if yesterday read like the same story.

it’s noon and i’m almost done with today’s infusions, which leaves me the rest of the day to roll around on the floor, trying to “honor my body” and its inability to get into any position even close to a productive yoga pose. there’s going to be a lot of child’s pose happening around here. then i’m going to figure out how to bathe in a manner that actually gets me clean. this sounds like something simple, and indeed, until a week ago, it was. of all the things happening, this is the hardest pill for me to swallow. i come from a hygiene obsessed culture. most days, my japanese parent takes two showers and a bath (sorry, dad. i’ve just outed your hygienic habits. on the bright side, everyone will know why you smell so nice). this whole toad shower, press-and-seal wrapped, dunk and squat to wash my two-feet of hair? it blows. hard. until my shower chair arrives, i’m stuck taking bird baths in my tub. as every japanese person knows, you shower before you take a bath. this chest catheter is interrupting the natural order of bathing. it’s interrupting bathing altogether. also, i’m going to own a shower chair and while i’m all for the lazy, sit on the floor of the shower for an hour routine (don’t you judge me. i have an artisan well. i’m not wasting water, only energy to heat it), that feels really geriatric to me.

today’s theme? acceptance. everything is temporary, even the inability to wash my ass properly.

mom, stop judging me for writing the phrase “wash my ass.” also, let’s not talk about this blog entry when you call me later. okay? thanks. i love you.


7 Responses to “call it what you want.”

  1. Sara Smith said

    I need your help, please. Please! Our stories seem to match up perfectly except I haven’t been fully diagnosed the same at this point. I finally got a call/answer yesterday stating I have MCTD. They tested me for Lyme prior to this through another specialist but I have yet to have the results from that, it’s been a month since they sent it to the Mayo clinic for further testing. I hope to hear from you, thank you!

    • sara, my heart goes out to you. with a mctd diagnosis, you must have so much going on with your health. have you been sick for very long?
      what are the diseases that they diagnosed you with under the mixed connective tissue umbrella? i was initially diagnosed with mctd with overlap features of SLE lupus, sjogrens, scleroderma, and polymyositis. i found the mctd diagnosis to be pretty confusing at first and then even more confusing was the fact that the “overlap diseases” changed periodically. sometimes i had positive serology for ones that were negative the year before.
      where do you live? i can definitely try to get you connected with a lyme literate doctor near you that can help you navigate what’s going on with your health. i was treated at the mayo clinic from 1999-2006 and they ruled out lyme disease without ever testing for it. my recommendation is always for people to contact ilads (the international lyme and associated diseases society) to ask for a referral to an ilads trained doctor. seeing a medical professional who is trained to look for how tick-borne illnesses manifest in different individuals is definitely the route that i would go. please let me know how i can be of assistance, okay? i’ll do whatever i can to help. best wishes to you. i hope you get some answers and can start to feel better soon.

  2. said

    Hey love! I am so sorry it has taken me awhile to get back with you. I was on my first vacation ever in my life when I got the call about the blood work results (ironic the way things happen huh!?). When I got back, I had to work all week. I made an appointment the following week in hopes of gaining some understanding but I left just as confused, if not more confused than before I went in! He didn’t give me an answer of any kind (besides Mixed Connective Tissue Disease) but that this is why it has been so hard to diagonsis me and this is why I have so many symptoms. He didn’t even tell me which ones I had exactly, although by research I could tell you those I believe to have. He threw me on more steroids again (this was only the 2nd time seeing him, so I am thankful he listened/found an answer) because he said I have bad fluid built up in my knees/hands/feet/hips and inflammation bad head to toe (well yes, this I could tell you! He also told me this first appointment). Then after that I am to start a Rheumatoid Arthritis medication, I cannot think of the name off the top of my head and can’t get out of bed right now. I also will be starting a nonsteroidal anti-inflammatory drug. He simply said we will have to see what these do and informed that he could not reverse the damage done, we will have to see which organs have been damaged, it will take years to feel better and that he would see me back June 22nd. I don’t feel at ease to say the least.

    My brain fog, memory, ability to get complete sentences out, all that (I’m sure you can relate), is really bad, SO I am very sorry if I make little sense.

    Yes, I’ve been sick for a very long time. I cannot remember a healthy day and I’ve made that statement along with others many times over the years before being diagnosed. I can remember a distinct difference from 7th to 8th grade. I was an odd child…I played all kinds of sports/activities, I was outgoing, passionate about many things, organized, saved money, cleaned, WORKED OUT…literally and I mean some serious workouts after school, I even ran track during lunch at school and none of which anyone forced or even influenced. I ate healthy, I taught older kids in my school, I excelled in many things from grades, to art, to hobbies, etc. In 8th grade, everything changed. My body developed quickly and I was a premature baby so many times the blame was placed there for this huge change in me. I was always fatigued starting in 8th grade. I stopped doing everything I did before and was tested for mono multiple times. I should also not I’ve been sick my whole life, up until out of highschool, it was pretty much monthly I had some kind of cold and when I would get the flu or something serious, I would go down HARD. I remember being in tents in the house with those steaming machines. I remember being thrown in ice baths and forever being on antibiotics with a big cold sore on my lip. Just always always sick. My glands remained swollen with a sore throat and mild fever from 8th grade on, along with the awful progressing fatigue. I was deemed depressed or lazy through out the years. I would get random pains and I would dismiss it…thinking oh its because of my heels, growing pains or just because I never feel good and my body is wearing down. I had bells palsy 9th grade year, the first couple weeks of school- so right out of 8th grade summer. My face was paralyzed for about a month and half. No one gave me an answer for that or did any testing. My mother didn’t believe me when it was happening either. I dont remember much but feeling awful and fatigued the remainder of highschool years. It continued on after highschool and I began working. I remember small things becoming more and more difficult for me and I would get frustrated. Literally forcing myself to go to work everyday and Ive not had much of a life. I crash after work. Many people call me grandma or “not a normal 20 something year old”. It’s hard to explain when you don’t even have an answer and I’m much like you, so I kept quiet and pushed on. I progressively starting going to the doctors about 3 years ago. I began to notice a horizontal indent that went all the way across my right thigh. It became deeper and deeper… I also experienced some dull pain with and it a “dissolving” feeling as I would describe. It got to the point where I had little fat tissue left and felt it was down to the muscle. I also had another area on my other leg but it was more of a dent instead of a thick line. I began researching it and found a picture that looked identically to my leg. Under that came the term “lipatrophy” or “lipodysrophy”. There were only THREE reasons this could be happening I could find. 1 HIV meds and this would cause it to happen in the face, 2 Insulin injections at the site of the injection and 3 auto-immunde disorders. I told my doctor about it, as well as the term/definition and she completely disregarded. She even had the nerve to tell me she didn’t think it was necessary, but if I wanted blood work she would write for it. She did however admit I wasn’t just built like this and that she could tell a difference between my right and left leg. Grrr. I didn’t go back to doctors for months until I began to have difficulty getting up and down, walking, the pain just continued to get worse, tingling in all extremities, etc. I wore heels one night and could not walk for a week. The pain was unbearable! This was normal for me but not to this extreme! I finally went to a chiropractor for my back and as he was evaluating me, when he got to my lower back, he paused and asked if I had been in any kind of trauma or car accident….WHAT?! No!? WHY!?! He refused to see me and sent me for an Xray. My xray results came back at my L5/S1 I had fractured at some point the facets (tea cup looking sides of vertebrae) and that my disc had slipped forward. I was also given the term Neural Forminal Stenosis. After 6 months I got a primary doctor (thats how long it took me to get in with her). Physical Therapy followed, along with steroid injections and nothing was helping all the other issues and I remained in pain. They focused on the back only, not the million other symptoms i was expressing and were pushing towards surgery. I refused. I went to several Neurologists, one of which told me my tingling in my face and extremities was due to “a cold I didn’t know I had”. Hmm…? I refused to see her ever again. My primary continued to tell me she was “stumped”, I really didn’t appreciate that. My blood work had came back with a few red flags, all of which everyone ignored. They told me my Rheumatoid Factor was high and told me they didn’t think a Rheumatologist was necessary. What’s even more ridiculous, my MOTHER has Rheumatoid Arthritis REALLY bad, shes been doing the infusions for years now. So almost a year goes by and I’m fed up… I had to ASK for my MRI’s and I had to ask to be sent to another new specialist. My primary ended up sending me to a Physciatrist? That term could be wrong. He saw me for 15 minutes, shook his head and said he was writing a letter to my primary doctor to send me a to Rheumatologist. I finally got to go see a Rheumatologist, she was just as stumped and told me she didn’t think it is Rheumatoid Arthritis and unfortunately couldn’t do much for me. She diagnosed me with Chronic Fatigue Syndrome (bullshit and I yelled that as soon as I got in my car). She did however ask me if I had ever been tested for Lyme, which is where that began. Her office, like almost everyone other one, is awful. I called to get results and they lost my chart. I called back again and they told me they sent it to the Mayo Clinic because of my antibodies being nonreactive. Then I wanted several weeks and called back again, to find out they had the results from Mayo clinic the 2nd time I called but someone was reading it correctly. The results don’t make sense to me and I’ve read everywhere, they can be wrong. The first one say “Presumpitive Positive” the second one says “not detected per criteria”. I have no further information on that.

    Im frustrated, I feel trapped in my own body daily and it’s progressing quickly.I need a break from work…like 2 years ago and I NEED answers. I actually discussed starting a blog hundreds of times prior to this diagnosis, I still might once I get things a little better controlled. I have no one who can relate and I am SO SO SO thankful for your blog! You have similar humor with this and a strong soul too, I truly appreciate YOU!

    Again, I apologize for this jumbled message! Oh and I live in Central Ohio.

    Best wishes beautiful, hugs!

    • oh honey, i’m so sorry that you’re going through this and i can absolutely relate to your story. thank you so much for sharing it with me. my brain is way too scattered to write the reply i really want to compose, so i’m going to revisit your words tomorrow. sending you love and sweet wishes for a good night. xo-k

  3. Towards the end there… I really began messing up, I should proof read! You get too exhausted after typing the whole thing to even do that though! 😉

  4. I just looked over my message and realized I wrote you a book, I had a burst of energy and began typing away- out of control. I’m so sorry! I keep expressing to my family and co-workers how truly thankful I am to have found your blog! I don’t feel SO alone. I pray you are doing well and I hope we can speak soon. I sent a message asking for information on a Lyme literate doctor like you suggested, I hope they get back with me soon. Goodnight beautiful*

    • ack! i just wrote a long reply and my computer ate it. did you find a LLMD in your area? if not, please contact ILADS for a referral. they responded to my email within 24 hours and connected me with an ILADS trained doctor who took my insurance and who was kind, compassionate, and knowledgeable. she was able to get me started down the path i’m on. if you have tried ILADS to no avail, please, please let me know and i’ll put some feelers out to help find someone close to you that can help you start to sort out your health problems and hopefully put you on a path where you start to really heal. wishing you all the best, k

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