Category Archives: Uncategorized

Going to start 2 1/2 MTX start today

I have been doing well. I feel confident that I will be fine to wean down a little further starting today. I do wonder though, will my body eventually realize, “hey I’m not getting enough of this damn drug, so I’m going to relapse!”  I can never know when that low level is…..until, that is, 6 weeks out when the therapeutic level has been diminished and depleted in my body and the evil disease begins again. Please, please please NO! I never want to relapse again!! I can not even bear to think about the pain, the drenching sweats and fevers to 103 degrees, the chattering teeth so hard that my jaws feel like they are in cramps, the tell-tale rash that starts first as a warning that the level of the drug is now too low and soon the spiral is inevitable. There is no way pst this point. I know very high steroids will be the only way to return to normal and then a very high dosage of MTX and then vomiting, vomiting, vomiting. UGH!   But really, its the big, fat, bloated face that just kills me. I am so vain.

I was tired yesterday. I was very, very, very, tired yesterday. I worked a long day at one of the 5 hospitals I go to. And I over did it, but my productivity looked awesome!! But then I drove  home with the heater up as high as it would go, freezing cold. I know this symptom, it means I have over done it. My wonderful husband had baked chicken, basmati rice, broccoli and nice green salad and he hand made carrot cake for dessert. I am so lucky to have a supportive husband, that really works too much and even has time to make a great dinner. I ate then went to sleep for 13 hours.

One would probably wonder why then go down on the number of pills per week? Well, I am so tired of taking these pills. I get sick to my stomach, I feel fatigued and it ruins my endurance. So, If I can just lower them so that I feel 95% normal then I will be happy. I mean, seriously, I dont ever want to completely off. I have tried 3 or 4 times before and we all know that story. So I am ok with staying  at a low dosage. My desire would be to get down to 2 and stay there, forever…

Here’s a strange thing, I saw the physician, that fateful physician, the one who told me ” OH, that patient is not infectious in that way, you dont need to put on the protective garb” the other day at one facility have been working at occasionally. I asked him, “so you left the other hospital?”, he said “yes, I did” and had a strange look on his face.As if he had a recollection about something, but couldn’t put his finger on it. Then he walked away. He has no idea how that day, 9/2/2008 changed my life. I tried to tell him one day, at the original hospital about a year after it happened, but he said ” Nobody gets that disease, it too rare” and then he walked away, just turned on his heel and walked away. I watched him walk away thinking to myself, “hmmm….interesting, I almost died and tried to let him know of what and he thinks I made it up. “oh well…..” I had come back to work for a few months at that previous hospital, when I was well enough. Oh, if he only knew……how rare it is indeed.


Methotrxate makes cold last longer??

I can usually dodge a cold, and have for the past two years, but this year, not so lucky. I went to work last Friday and overheard several colleagues saying they had colds and that the flu was going around their department. “great” I thought, since I was contract in this building for the day, I prayed that I would not get a cold. I don’t like to advertise that my immune system is lowered by a medication I have to take everyweek, but it is true. And then, 5 minutes later, I hear……SNEEEEEZE! A co-worker walks right by me, doesn’t even effectively cover their face and sneezes. That moment, I knew I had just inhaled cold bugs. DARN!!! I was so angry! How can people be so clueless??? Cover your nose! I wanted to scream. But instead, I just smiled and told them I hope you are not getting sick. UUGH!! So next day day, sore throat, then sneezing. But this has been going on for over 1 week now, no change. I have sweats, fever, sneezing, stuffy head. Thsi cold just seems to have a tight grip on me. I hope, I hope, I hope it goes away soon. I pray that I do NOT relapse. It seems in the past , stress or infection, or foods can trigger relapse. My food intake is doing well. Staying away from wheat, but I went to Spain with my mom for 2 weeks and I started to eat dairy products because soymilk was dificult to find and hard to keep when changing hotels every 2 days in different cities. I had a great time! I didn’t even have a relapse with all the stress of time zone changes, fatigue of 14 hour flights, strange food intake, moving heavy luggage around on and of trains and into various hotels (my mom has incredible energy for her age!!) I do have a small idea that this cold my be also a result of poor endurance coupled with the sneezing colleague. Does anybody else experience colds that last longer than usual, or other immune ailments that just don’t go away as fast as they should while on methotrexate?? Just wondering…


Fell off the Anti-Inflammatory diet

I was doing so well, for weeks. I ate only what was on the IF list and I always stay away from all wheat. I know enough now to know that there is no allowance that I can get away with. None. NOt even one bite of spagetti. But I have not memorized the list of foods of the list that contains about 5000 different foods. So I made a delicious curry with coconut milk as the base. It tasted amazing! But I knew something was wrong when I woke up with chills and then night sweat. I racked my brain to figure out what I had eaten that was wrong, or thought that maybe my MTX pills were failing me. When I got up in the morning, after what little sleep I got. I noticed that coconut milk ranks in at -446 for a cup! Dang! I love coconut milk!! NOw here is another thing that I need to cross off my list of delights. Oh well….as I have learned so far, giving up the things I used to think I could not live without, is not really that hard. Most of all I would rather have the energy and health to go through my days, and sleep well at night than indulge in a meal of “dangerously delicious” foods. Actually now when I’m out and friends have a piece of cake it actually looks evil to me. I know 100% that a piece of cake would set me off into a full blown flare starting back at ground zero with steroids for 8 weeks, a puffed up face, sleepless steroid nights and then another high dose of MTX. So all sugar looks mean to me! I’m back on the IF wagon and doing well again. I hope everybody with AOSD sticks to the diet! It works!


The anti-inflammatory diets works!! except when you fall off the IF wagon

So the diet has been working so awesome that I can’t believe it myself! I have had absolutely zero rash for over a week! But then while flying back from Colorado yesterday, I had a delay and what turned out to be an almost 3 hour delay. So I fell into my old self. I ate a caramel sundae smothered with hot carmel that kind that gets chewy and gooey as it chills against the vanilla ice-cream. Then I thought, aww what the heck, I’m doing so well with my illness that I can have the slice of cheese pizza. I felt fine until about 5 hours later. The rash came back so terrible that my thighs and abdomen and sides of my body were so hot and bumpy, and then i got chills, and then my joints started to hurt on my fingers. I went to bed early with extra blankets, so upset at myself for screwing up my hard work of following my ani-inflammatory diet so closely then falling off the wagon. I vowed in the morning to start the diet rigorously again and never stray again. It gave me a tatse of how bad my life was before. Tonight is Methotrexate night. I took my 4 four pills. Yes! Only down to four pills!!! YAY!


Day 3 on the Anti-IF diet

Well last night was methotrexate night.  I hate those pills. I was so nauseas today. I slept many hours. I need to change back to Sunday nights for those darn pills. I have ruined my weekend changing to take pills on Fridays. So grateful that my husband is so supportive and generous and understanding. He helps by doing research about different meds and explains the scientifics of cellular interaction. and drug studies going on. I am doing ok on the diet. I actually feel a little better today. I really dont crave that much of the foods I am not supposed to eat. My food choices are very limited until I learn how to cook this new way. So far a lot of shrimp, sardines ( love them!), crab, lean poultry, and lots of salads. I munch on radishes and celery instead of cheese-its and I reach for a slice of beets instead of chips or a cookie.  I am doing this diet religiously. I have no desire to cheat.


Starting the anti-inflammaory diet

Well, the good news is my illness is not getting worse, the bad news  is I must prevent myself from relapsing, as I came so close to in Philadelphia. I have been told that it is imperative, mandatory, that  I abide by a special diet. I must do this diet as if my life depends on it, because in reality, it very well may be. I was told by by MD that I may have to start injections of a higher dose of methrotrexate, if we can not get this stupid disease under control. This would be terrible. My hair would start to fall out in clumps, my skin would get very dry, I would begin osteoporosis and the progression of my health would deteriorate. But the positive health ramifications would be that I would stop the rashes I get, stop the inching forward to relapse.  The alternative to injections, I hope, is to follow this diet to the 10th degree. From today I vow to eliminate ALL wheat products from my diet, ALL sugar, All red meat, potatoes, dairy, and preservatives. The list is actually extremely extensive but this is the nitty-gritty, the gist of it. The focus is that I follow a diet that relies on an anti-inflammatory scale.  I downloaded the scale and found out the most interesting things about the foods I ate. What I thought were “healthy”, such as bananas, tomatoes, yogurt, soy products, certain grains, etc. have been actually inflaming my body. The scale works by grading everything. I mean everything. The food item is then given a number. If the number is positive such as salmon then it is good for me. If its negative, like captain crunch cereal (-250), then I have just assaulted my body and I if I continue then I am making my disease worse and the road to injections is being paved by my weakness to control my food choice.  Well today is day 1. I am eating in constant tiny portions just trying get a handle on this diet. So far, I like it. Mainly because I love fish, all types, and I love vegetables. I miss bread already 😦   and its only 3pm. I will keep you all posted. As Hippocrates said: Food is medicine.


Happy Travels after AOTA conference and interesting flight companions

What a wonderful time I had at the AOTA conference! I met some very nice women and made a few new friends too! I took a cab to the airport with plenty of tiime to spare just in case I got lost in teh terminal. But I was prepared.

Sometimes when I’m waiting at the airport, time can fly as I become absorbed in my emails, get engaged in the doodle and drawing program on my iPad, text messages, books on my kindle and a variety of “toys” I bring to amuse myself as I wait at airports.

This particular trip I had gotten absorbed again and when I heard the loud speaker announce “boarding in 5 minutes!” I panicked because I had not yet bought food for the 6 hour flight, so I ran over the closest food place I saw and bought a burger and fries and shoved the bag into my travel case and boarded my plane for home. I found a seat in the middle. Too bad i didn’t get an aisle seat, my favorite. I put my things away and got adjusted in my seat. I was hungry and waited until the captain announced ” we have reached 10k feet you are free to turn on your electronic devices. When i heard this announcement, i happily pulled down the tray table and brought out my lunch. I had taken 2 bites of the burger, when the woman next to me said, ” I’m a vegetarian”, while chewing my food, I smiled and nodded, in acknowledgment. I respect all diets, vegetarian diets, gluten free diets, dairy free diets, snickers candy bar diets. It’s all ok with me. I do not judge what another person chooses to eat.

She kept looking at me and said, “I don’t eat meat” . I was reaching for a French fry, and said, ” my sister in law is a vegetarian, she enjoys it very much, there are some recipes I like too”. I thought this might be the end of the conversation. The older gentleman, who appeared to be in his late 70’s or early 80’s was seated on my right, kept reading his AARP magazine.

The woman turned to look at me as I ate, I knew another comment was coming. I was right. She said, “I’ve been a vegetarian for 18 years, I’m doing my part!!”. First, I wondered what she meant by “doing my part”, was it her her part for the environment?, for humanity?

I put my hamburger back into it’s box and put in the bag. I turned to look at her to give her my full attention and I said very calmly and genuinely, ” I am an occupational therapist, I have worked with autistic children, i work with patients with traumatic brain injuries and teach them compensation strategies to get through life, I work with spinal cord patients and teach them how to be independent in the world, i work with the mentally ill and educate them with coping skills, and I work with aging patients, geriatrics, and educate them on how age in their own home safely. I’m doing my part too.”

With that, I pulled my big Mac from the bag, took a bite and relaxed in my seat. I finished the rest of my hamburger in peace. Of course there is so much more to what I do, and what i could have said, but these are the words that seemed to work at that moment. She finally sat back in her seat.

The elderly man next to me looked over at me, patted me on the leg and said, “god bless you, thank you for all you do” . This was the one of best thank you’s i have ever received and turned out to be one of the best flights I have ever had.