Time to reach out.

Hello Dr Yazici,

I visited you in 2010 with an informal Behcets diagnosis manifesting in restrictive lung disease, ulcers and skin rashes. I'm 32 female without uveitis When I came to your clinic I had started on 100mg daily dose of Imuran after many failed attempts of Prednisone treatments. Dr Thuc Nyuegen is my Rheumatologist here in Washington State at The Everett Clinic.  I believe you had some previous correspondence with him regarding my case. When I visited you you changed my treatment plan to 175mg/day for two years. I have since been off the Imuran for over a year and just recently developed psoriatic arthritis in my hands, fingers, toes and feet. I'm currently on a 20mg per day, and a weekly increase taper by 500mg of Sulfasalazine. I'm on week 3, 1000mg in the morning and 500mg at night, the taper will be complete next week when I reach 1000mg in the am and 1000mg in the evening. I'm looking for advice on this treatment plan. My swelling and pain is extreme. I'm using a wheelchair in the mornings and I'm not feeling much relief from the medication. I understand that it can take time for the sulfa to work. I do not have any ulcers at this time, my lungs appear to be functioning well (I haven't seen my Pulmonologist yet) Do you agree with this treatment? Any suggestions? Should I come see you again? Thank you for all your help! Hope this email finds you happy and in good health.

Ps. I've cc'ed my mother in this email as well.

Raynauds...just kidding... Psoriatic Arthritis

Since my last post I have visited a podiatrist twice, cortisone injection and completed a 6 day #MethylPREDNISolone treatment. I had the prescription for a week before I decided to take, the shit is just plain nasty! It took me crawling to the bathroom in the middle of the night and having my mother bring me my grandmothers old wheelchair so I could get out of bed in the morning. I haven't worked in over 3 weeks, I'm depressed, angry and scared. The first podiatrist apt was typical of many Behcets patients visiting a specialist for the first time, I was his first. I received an informal diagnosis of Raynauds with a follow up in 1 week. The prednisone helped immensely but it was short lived. I've been off the taper for 4 days and its regressing back. It's in my feet, hands and left hip. The pain can be astonishing. Literally day to day, good days and bad days. At the second appointment not surprised to hear the Podiatrist retract his diagnosis (I'm guessing he did some homework) and contributing it to the Behcets (no follow up with him needed). Couple things said were "I'm sorry, I just didn't realize the severity of the disease" "Honestly I don't remember even covering this in medical school" and "you may just be a good candidate for a pain clinic". Hmmmm...okay, thanks and goodbye.

Rheumie appointment the following week was a success. I guess. Never fun when you have to go see the doctor that you only go see when something is wrong. But I have agreed to do a 30 day prednisone treatment while we wait for the Sulfasalazine to kick in and work. This blog was tough for me to get out. I should and will post more specifics later but for right now I'm done.

PS. Happy notes, I ordered a juicer and I'm excited about it. And I'm supposed to start classes in 2 weeks...scary!I forgot the best news of all! I was able to see my old Rheumie!! Didn't have to be auctioned off, but I did have to change insurance plans. :)

looking a little sick

"You don't look sick"...Pssht Unfortunately over the last 2 weeks I have developed a foot issue that has me limping, bracing and at times using crutches. It has resulted in me looking a little sick. Especially if you know me, as I'm a very active and at times somewhat of a theatrical type of person ;)

I've been to my GP and am patiently waiting for a referral to a foot specialist. Of course the question popped up, as expected "when was the last time you saw your Rheumatologist" ..."eh, a long time". Not because I don't want to (well maybe) but now that I have some kind of state crazy welfare insurance I can't go see the one that's been through it all with me. Which means I have to start all over with my story and that exhausts me just thinking about it. Oh yea! I have to actually pitch my case and wait to see who chooses to take me as a patient now. Yes, this is real life! Hoping for the UW. My old Rheumie graduated from there and is still very close to the Rheumatology Dept. Although who knows?! Is it the Behcets or isn't it? This seems to be the question I ask myself a lot when something strange starts to happen.

Oh wait! I have good news!!!! The CT Scan on my bladder came back normal, maybe cause I'm the queen of *normal test results with fucked up body parts*? Haven't had any infections lately either though...maybe it's moved from my bladder to my feet? ...maybe I'm getting old? ...maybe it just likes to play musical body parts? ..maybe maybe maybe???

That's enough for now. PS. I'm only 32 ;) ...not even close to old!

A note from a friend

Hi Linda..yes you guessed right. No news is good news. I found myself working too much and had to quit one of my 3 jobs. Trying to enjoy life as much as possible. Been struggling a little with depression but my babies keep me afloat. Wish life came with a manual and directions sometimes. Been trying to challenge myself...started playing the violin, talk about testing my patience, but it's a good thing. Also started working out with a personal trainer. Having a tween has proven to be difficult beyond what I ever imagined. My Behcets seems to be in remission but I've recently been having some bladder issues, been referred to a urologist. Bladder problems are a family tradition so I'm not really linking it to my Behcets. Took the girls to the beach this weekend and stepped on a piece of glass...has me hung up for a couple days but almost a blessing in disguise. Take care and thanks for the hug. :) Annie

2 yrs and 22 days

hey. I'm here. I'm alive. My life went from normal to not. I decided prematurely, to be done with my Imuran therapy. April was supposed to be my final month but I haven't taken one single dose this month. I have zero ulcers to report. My lungs seem to be okay but I'll know more at my next apt and months down the road. I wish I had the energy to elaborate more on my life right now but I just don't. The conclusion is that overall I was and am happy with my 2 yr Imuran treatment. That's all.

Once upon a time I had a plan and an angel...or three.

I had a really great plan. But then I changed it and made a new one, a better one? No, unfortunately the new plan turned out to be the worst ever, it included damage to myself, my children and the people closest to me. It was rot with disaster and took me to the lowest, darkest place I'd ever been. The plan lasted 1 year and will leave painful scars. Now I face the shame of having such a terrible plan, for going against my better judgement and for ignoring that voice in my head. All reasoning was gone.

The one good thing about this new plan is that it came with some angels (and knowledge). The last year of my life has been a battle that I didn't fight alone. These angels held my hand. Guided me. At moments I think they even laughed at me. But most of all they protected me, even saved my life a couple times.

I separated from that person I thought I loved and the plan that accompanied him...I'm looking up from that place. Actually, maybe now that my angels have some down time they can figure out a new plan for me cause I kinda need one...something fierce. I'm grateful for the patience and understanding of my daughters fathers during that time, they are indestructible rocks.  

What's Imuran?

It's January and today I reflected on where I was exactly one year ago today... On an airplane, with my family, on our way to Hawaii for a vacation. It was the most horrific flight I'd ever been on. Lucy at the time was 2 and completely miserable. My ex-husband David was experiencing some kind of self induced coma and was no help at all. But Hawaii was amazing, probably not as amazing as it could of been but nice all the same. It was the last big thing my family did together before everything changed. The kids are adjusted. David is good. A year later and he has moved on. He is a soldier and I'm sure will use the experience that was 'us' as a survival tool to fight off future heathens he might cross.

The point you ask...What's Imuran? My point is I haven't taken Imuran on a consistent basis for at least 4 months. Bad news: I've slacked severely on my meds. Good news: No major symptoms have surfaced that I can tell. I say "that I can tell" because these silly lungs of mine can be tricky.

Stay posted for more...I have an appointment with my Rheumie on Jan 24th, can't wait for that lashing.

Somewhere lost in time

Despite the state of my mind, heart and soul my Behcets symptoms are doing okay. I can't go into what has happened over the last couple months too much right now. For no other reason then I'm just not able to put the experience to words yet, besides only this Nutcase in this Nutshell should have to carry the burden. But I'm here, broken and lost in time. It's June and apparently May wasn't worthy of a blog, actually May wasn't worthy of much.

One year and counting

I went to my one year Pulmonary Function Test and my lungs haven't changed since my 6 month appointment. I suppose that's good news. I seem to be okay on the 100mgs of Imuran. I've had a few oral ulcers since I changed the dose. My girls and I are adjusting to our new home and life. I'm still not sure what I'm going to do about my health insurance after July. I'm supposed to have another PFT in October and I'm wondering if my cheapest bet would be to head to Canada for it and pay cash. I still have some time to think about it. Everyone keeps asking why I can't stay on my ex-husbands insurance, apparently people do it all the time. He's not too interested in entertaining the idea for longer then it takes him to say "NO". Everyone also keeps asking me if I'll ever get married again, at this point my answer is "yea, for health insurance".

Day 357 I'm running

I started a new job. I'm moving myself and my daughters into an apartment this weekend. I signed divorce papers last week. I have my 1 year pulmonary function test next week. I won't have health insurance after June. I started taking 100mg's of Imuran a day in order to be able to bank enough meds so that I can hopefully complete the two year treatment. I just want to close this chapter of my life. I'm running. Yes, I am. Either run and be free from the stress that was my married life or stay and see just how sick I can get.

Day 304 A Good Scolding

Went and saw my Rheumie today for a follow up and meds check. He wasn't very happy that I've missed my last 2 blood draws. I should have had blood drawn in December and then again last week. I just keep forgetting! I stopped taking my Imuran earlier this week in order to allow the antibiotics for my bladder infection to work and also so my body can help fight the infection. Today is my first day back on it. The stress in my life is like none before and it will be a true test for my disease. I know the stress will pass and I just need to keep my eyes on the horizon.

Day 301..Batting zero

Hello everyone. Damn, life truly has a funny way of throwing curve balls at you. I'm a living testament to that. I don't think I'll be coming off the Imuran in April to get pregnant. I'm not really sure how much longer I'll be able to take it. Nor am I sure if I'll even have health insurance come April.

Aloha!

Not too much to report on my health. Still on the 150mgs of Imuran per day but I'm stopping it in April for pregnancy. It's decided and I'm super happy about it. Need to go see my Rheumie but first I'm going to enjoy this week in Hawaii and the family we're visiting.

Old Year

The last couple weeks have been busy. I haven't been very diligent about taking my Imuran which may be a good thing since the stress of the holidays always seems to drag me down and I end up getting sick. The extra antibodies were probably helpful. Unfortunately I've been back on track now for a few days and I'm getting the cold that Lucy just got over, tis the season for runny noses.

Looking forward to tomorrow. I haven't gone out for the new years in a very long time. My husband and I usually stay home, fall asleep by 11 and it's great. This year the kids have been invited to have a slumber party at Granny's. I figured Dave and I would stick to our normal tradition however, the more I think about shitty 2010 being over the more I want to celebrate. This year we'll celebrate the New Year by celebrating the end of the Old Year! Maybe a nice dinner and some dancing.

A day in the 200's

‎...some time the week before Christmas;

...church, shopping (bad idea), home, dinner, Scrabble game with David; 208-me to 207-him (apparently he's been practicing), oven caught on fire (apparently it's broke), cat started falling over (apparently she's sick)

I'm here...I'm HERE!!!

I've been busy with the holidays. I did a little traveling in attempt to get me in a more motivated mood and it worked. I came home from a friends house in Idaho with a new inspiration to join forces with my husband. For some reason we have always had separate rooms (but slept in the same room together). In some sense it makes sense (pun intended) because he works swing shift and it's easier on our family. The separate rooms has been causing me stress lately and I desperately needed a change. He was reluctant at first, he hates moving furniture...especially when stairs are involved.

I haven't been very good about taking my evening 50mgs of Imuran and I ended up with 2 huge ulcers in my mouth and some genital ulcers as well. It's just a nasty reminder of why I'm sticking with this shitty treatment. I have more to say but I'm tired. I hope you all are well.

Day 227 Shout out!

Thought it would be a good idea to point you in the direction of Joanne Zeis, she also has a blog called essential behcet's. You can find her newest post about flu shots at the link below and also on my blog under "Some sites for info on Behcet's" . I always find her reference articles very useful...Thank you Joanne!

http://behcets.blogspot.com/

You can also visit Joanne's website at www.behcetsdisease.com. Joanne states on her website that;
"Trying to find appropriate treatment is hard enough. Finding well-written, comprehensive information about Behcet's disease shouldn't be one of your frustrations."
She is spot on with this statement. Unfortunately I don't provide 'well-written, comprehensive information', however I will give you a good sob story anytime. Thanks to Joanne and everyone else that puts in the effort to help all of us sufferers. Did I mention she has written books on Behcet's? Make sure to check out the "Books" link on her website too.

From reading through the essential behcet's blog today I stumbled across a post;

From Cindy:

I have some good news for us all. Over the last two years I have been working with the VCRC (Vasculitis Consortium Research Center) to add Behcet's Disease to their database. Well I would like you to all know that this has now officially happened.

What this means to the Behcet's community....
- We can now register our names to be informed and included in any new research projects.
- Researchers don't want to take on rare diseases because it is too hard to find participants.
- With many BD patients on the data base, a researcher can then apply for more funding because he has a base of people to start off the study.
- Government funding is also more readily available
- Support groups can then help fund some of these studies.

It is SO very important that you register. It is just a short form which will take about 3 minutes to fill out. It does not hold you to participate in any study unless you wish to.

PLEASE take a few moments right now and join the registry. Let them know that Behcet's is not as rare as they think. With all of us registered, they will be able to see what a large group we have. Also send this to any others who have Behcet's Disease. It is not country-specific.

JOIN HERE: http://rarediseasesnetwork.epi.usf.edu/vcrc/registry/index.htm

So I registered...now it's your turn!

Day 226

My last post was a little dark and gloomy. Sorry about that. I decided to go off my Imuran last week. My husband and I talked at great length about it and decided it would be the best thing for our family. I feel outraged that I have to take this damn medicine. This is the time in my life when I'm supposed to be having babies and building a family. David and I both want another child before our youngest gets much older. If I complete the full two year treatment our daughter Lucy would be 5 before our last baby is born.

I went off the Imuran for 1 day then started back on it. Part of me is scared to stop it and the other part is desperate to stop it. I'm going to go back to my original goal of 1 year.

Day...whatever-222 I shouldn't ignore you

I'm ignoring you. I could say that I'm too busy or don't have much to say but I have lots to say and think about writing often. My mind is filled with things to write. I realized today that although my excuse for not writing has been "Maybe later when I'm feeling better", this is not the true reason. The real and true reason is because I'm scared to admit what is really going on. If I acknowledge it, I have to accept it. If I accept it I have to deal with it. Dealing with it means facing it and frankly I don't know if I'm ready to do that. Honestly I'm not even sure what "it" is.

What I do know is; I feel angry, ashamed, hurt, confused, bitter, jealous, lonely and scared. What I'm not feeling is happy and complete. The term "biological clock" never meant anything to me until now. Some women's is stronger then others and apparently mine is on steroids (just a figure of speech, I'm not on steroids right now and for future reference prednisone sucks ass). I also know I have the most amazing family and if it wasn't for unconditional love this would be a much different story.

Day... whatever "fine, good, nothing"

The three standard answers; good, fine, nothing

How are you? good
How are you feeling? fine
What have you been up to? nothing

I don't know what day it is on the Imuran count down. I'll figure it out later. I just wanted to touch base with the cyber world and update you. The rash on my arm turned into a rash on both my arms. It has since gone away but lasted for about 7 days. Something was going on with my eyes a couple days ago. Not sure what. I thought it was pink eye, minus the pink. They seem to be better today.