End of May, A Surprising Birthday Gift

Hopeful.

Scared.

Overwhelmed.

Resentful.

Fortunate.

In Vermont Ben’s mom spoke highly of her experience with acupuncture and without knowing much at all about my condition, she urged me to give it a shot. I spoke to my parents about it and they told me how they had wanted me to try it when I was really sick but because it involved needles I wanted no part of it. For over a week I talked to a bunch of people about it and almost everyone said it didn’t hurt and would be worth a try. I stayed pretty calm in the proceeding hours and days, you could say I was even a little excited. The doctor’s English wasn’t perfect and I wondered if he understood everything my mom was saying and if he had heard of any of the medications and treatments she mentioned. I felt panicked not really knowing what was going to happen or what to expect. My mom was describing my condition and she pointed to my trunk area and said I was distorted. That was flattering. I hate these mixed messages from people telling me they don’t notice anything when clearly they are lying. At the same time, why can’t my own mother be more sensitive? He asked me to stick out my tongue and then told me I was deficient-something to do with my circulation. He asked if I slept okay. He explained some of the acupuncture workings how it opens the meridians and lets energy flow by opening up scar tissue and relaxing muscles. He said how he would put needles in places depending on where I hurt. I was very scared the entire time and didn’t like the idea of having needles stuck in me all over. I kept my eyes closed for a long time and tried my best to take my mind elsewhere but so much was going on and he kept asking me to move around and I wanted to follow directions but I also felt terrible. I felt dizzy like I might faint and pained. He was very nice and saw on my chart that it was almost my birthday. He said this would be a great birthday present that I was going to feel so much better, instantly. He said how much I’ve suffered and how from now on I was only going to improve and he looked me in the eyes and said he was going to improve the quality of my life. He hardly knew how my life has been impacted by my body yet I believed him wholeheartedly and wept. Tears of pain and fear. tears of hope and overwhelmed with emotion-could this really be happening? Was I about to get a magical treatment to make everything go away? He kept putting more and more needles in and I just wanted him to stop, stop puncturing my skin. Everyone didn’t hurt but I hated knowing what was going on. I could feel things happening in my body and it frightened me. Once he put a needle in my hand and I felt a large sensation in the tip of my finger. I tried to relax but couldn’t. I felt like my hands couldn’t move but were in an uncomfortable position, any movement hurt more. The head needles scared me the most. Before he started and he said “I’m going to put 5 needles in your head” I smiled in disbelief-are you kidding me? Going into this appointment I had ignorantly imagined a few needles in my back and that was it. For 30 minutes I talked to my mom in an effort to distract myself. It was okay mostly but I cried consistently in a hyperventilated panic. Now I get to go have some disgusting Chinese herbal tea and look forward to doing it all again on my birthday, this Thursday.

The Power of the Collective

22 year old male, 6 years into the eosinophilic or morpheaic fray, post-college student, living and working in the (late) great high-five state of Michigan.

High-fives... something that I could not do as recently as a few years ago.

Understand that my story and symptom trail is very similar to both previous posts. And, after reading the Flares post, I have decided to skip all of that part of the story. I choose to skip the history because of the comment (paraphrasing), "In the midst of a flare, I can't get my brain to focus." *Bad pun alert* I am going to focus on that comment. (sorry for that).

Lack of focus- I expressed this feeling to my doctors every time I came in for new treatment, based on my flare-ups. Constant fatigue and lack of concentration were (and are) pervasive in my life. They would only respond, "I don't get any sleep either. I know how you feel." I tried to explain that this was a different feeling from my normal, college fatigue from study binges or late nights out. I even asked them to try and discover an answer during one of my MRI's. No answer was given other than "Not connected to the illness."

I tested my sleep patterns, tried to find my REM cycles, slept more, slept less, took natural vitamins on top of the regular treatment, and still felt lost and fatigued. I felt - and still occasionally feel- trapped and lost inside of my own mind. Somehow, it feels like I am peering through the back of my head into my eyes. I also have no history of ADD/ADHD.

Until now, I was nearly convinced (by others) that these symptoms were not symptoms at all.

So - thank you Jocelyn and thank you Kathleen. The blog has already caused me to re-evaluate the effects and status of my illness.

*Where is he now, you wonder?* I am currently off treatment and use crossfit workouts as my own treatment method. Check it out- it has worked wonders for me. I feel that the less active I am, the more flares I feel oncoming. Also, I am training for the Detroit marathon this October. Let me know if I will see anybody there!

Until next time,

Calvin

Ugh Flares

I would like to express my thanks to Jocelyn for starting this blog, what a great idea!

Background: I am 31, and was diagnosed with Eosinophilic Fasciitis (EF) when I was 15. I was originally told that I could go to school, and lay in bed, and that college was probably not in the cards for me...I went to college, got my MBA last year, and am married with 2 beautiful, healthy boys. I work semi-full time for my family's glass company. I am in management, and am at work about 60% of a week. It works out well so I still have time for the gym, and don't have to rush out on the boys in the morning. And I am with the boys all day Friday, and of course the weekends.

After my first year of being diagnosed and going to physical therapy, I held fairly steady on my regular meds. I competed in show jumping competitions all around the US with my horses, and kept fairly active. I have had a few major flares and a few minor flares. Even after all this time, I am still slow in identifying a flare. I'll notice that I have more pain and stiffness, but usually attribute that to something that I may have done out of the ordinary, and then a few days may turn into a few weeks. Then I realize that it's really bothering me and I'm not sleeping. And we get bloodwork done, and done again...and what I really can't stand is how tired and out of it I feel. I would like to think that I'ma fairly smart individual, but when I am in the midst of a flare, it's like I can't get my brain to focus, and then I feel lazy.

Anyway, I don't want to be a downer, it's just what I'm in the middle of right now. As far as medications, I currently take Relafen (an NSAID), prednisone which we change doses of frequently, always trying to get closer to zero, but never lower than 3mg so far), plaquenil, and flexeril as needed. I also have asthma and allergies, so I have stuff for that too.

Thanks again Jocelyn, for giving me the chance to talk about this a little, or at least get it out of my head!!

My Hips Don't Lie

I hope this blog will inspire, comfort, and document the experiences of people like me who are fighting an auto immune disease. Personally, I also want this blog to keep my friends & family up to date on my health even though it unfortunately (and fortunately) doesn't change often enough. This blog will guide, advise, support, comfort, and grow...thanks for reading :)

20 years old, female, from CT, diagnosed at 12, main symptoms: very limited joint mobility (entire body), skin discoloration, main doctor: Frank (NY). Occupation: college student

It's impossible to know where to begin so I'll start with the present moment which is my motivation behind creating this blog. Today I had an acupuncture treatment (about my 9th or so of the summer) and I told the doctor (zhang) to focus on my hips since I had noticed during a yoga class recently how incredibly tight mine were. He started to stretch my legs/hips in different directions to see what he was dealing with. Zhang began putting the needles in my heads, hands, wrist, legs, and lastly my feet. It hurt as usual, some needles more than others, but with the company of my friend David in the room I stayed calmer than usual. I didn't shed a tear (HOORAY!) and Zhang began moving my hips as he moved the needles a little and worked his magic. It was obvious to him and David that my hips were becoming looser at that very moment. I wasn't 100% convinced but of course I was in the room, enduring this treatment that i dread each week, because I believe in this treatment and have seen unbelievable results from it. Despite a long day, after returning to NYC I had the unusual motivation to go to a gym class-eager to see if my body felt different. I decided to go to the total body conditioning class on 80th and broadway. the class was great. i felt awesome, i was even dancing to the music. i started to notice my leg was able to be raised higher straight and closer to my head than it could before. then i felt it was easier to do lunges something i've been struggling with the past few weeks in these gym classes. then i realized before the end of the class that i could sit with my butt on my heels-something i absolutely have not been able to do since before the disease began when i was 12 years old. after the class end i stayed for a few minutes stretching and then thanked the instructor and told him what a great class it was. i told him what i had just discovered but he didn't understand. i left the gym, adrenaline rushing, crying, called my mother, my boyfriend, my ex boyfriend, my best friend, and so forth. on the way home i gripped the cramp in my stomach until i reached the apartment. i tried to find the song i feel like a woman to play on my phone and dance to as i came into the room to greet my roommate. i hadn't felt this excited since i was able to clap my hands for the first time in many years. i started singing the song larger than life in the shower...and dancing...and i think you get the point. one last detail i forgot, i could feel the difference in my strides as i walked home. i never even realized i felt tight when i walked but now i know...I'M FREE!!!

after dozens of treatments with very minimal results, acupuncture has been so impressive and the changes have been immediate.

http://www.zhangsacupuncture.com/

update-8/6/09

i'm not feeling as mobile as i was when i wrote the above post-but at least acupuncture has given me hope that has been lost for many moons :)