Living With An Invisible Illness: Behcet's Disease

I don't talk about this much, but maybe the following list will help you understand what I've been dealing with lately and why I'm too exhausted to write much or socialize.

 21 Things About Behcet's You May Not Know:

1. The illness I live with is: Behcet's Disease
2. I was diagnosed in the year: 2011
3. I've had symptoms since: 2007
4. The biggest adjustment I've had to make is: Working less, giving up social activities, spending my fun money on health care
5. Most people assume: I'm lazy or depressed, not sick
6. The hardest part about mornings are: Waking up.  It's almost impossible if I do not get at least 10 hours of sleep.  Also, joint pain is worse in the mornings and it takes awhile for the stiffness and swelling to decrease so I can stand up straight and walk without a limp
7. The hardest part about nights are: Finding a comfortable sleeping position and dealing with the constant itching which increases at night and often awakens me.  I frequently scratch so deeply that I bleed and end up with scabs all over my legs, arms, torso and shoulders
8. Each day I take ___ pills and vitamins (no comments please):  On an average day I take 4 prescription medications and 3 vitamins, but if I'm experiencing a flare I take an additional 2-3 prescription medications
9. Regarding alternative treatment: I am very open to alternative treatment options, traditional medication has not offered me much hope or relief.  I am also researching the role of diet and hope to determine if some of my symptoms can be controlled by eliminating certain foods
10. Regarding work/career:  This has been extremely challenging for me and my boss.  I used to be so dedicated to my job, worked whatever was necessary, poured my heart and soul into it, but now I simply cannot do it.  I often find it difficult to work 8 hours a day, let alone more.  I am afraid it will cost me my job, which is upsetting because I have no one to help me with my finances, etc.  It's just me trying to support myself, cook, clean, pay bills, and heal this broken body and soul - it's getting harder everyday
11. People would be surprised to know:  That although the fatigue and pain are constant, the scratching is by far the most difficult symptom to manage as are some of the more embarrassing symptoms
12. The hardest thing to accept about my new reality has been: Losing life as I knew it.  I can no longer travel, I socialize very little and my weekends are reserved for resting - If I don't sleep several additional hours on Saturday/Sunday I will not be able to work the next week and will likely end up fighting a virus/fever/cold.....
13. Something I never thought I could do with my illness that I did was:  It hasn't happened yet because this is still too new for me, but I hope to get healthy, active and fit and then travel to Europe again
14. The commercials about my illness:  There ARE no commercials for Bechet's, most doctors have not even heard of it, let alone the general public
15. Something I really miss doing since I was diagnosed is: Enjoying a social life, working and playing hard, traveling to exotic destinations and exploring different cultures
16. It was really hard to have to give up: My social life
17. A new hobby I've taken up since my diagnosis is: Does sleeping count as a hobby?  
18. If I could have one day of feeling normal again I would: Play golf, paint my upstairs rooms, deep clean my apartment, cook dinner and dessert for friends and play with my nieces and nephews
19. Want to know a secret? It really gets under my skin when people say: Call me if you need anything.  Ha!  You would be so annoyed if I actually took you up on that offer because the needs are endless right now
20. Something that has surprised me about people's response to my illness has been: How quickly they walk away, quit calling or judge me for my inability to function like I used to.  It makes me really sad
21. My illness has taught me: How very weak and vulnerable I am, but although my body is weaker my faith is surprisingly stronger.  Perhaps because I have no on else to lean one and no illusions of being taken care of by anyone else but my Creator!

The Balance Beam

Once upon a time I was an aspiring gymnast.  Okay, not really, but I DID take a few lessons when I was a wee little thing.  I'm sure you can imagine the grace and skill I brought to the sport.  Ahem.

In all honesty, I was as terrible at gymnastics as I am at most sports.  Uneven bars?  TER-RI-FIED.  The  trampoline?  Convinced I was going to break my neck, although I outgrew that fear years later.  Uneven bars?  LET GO of one bar, fly through the air and try to grab the other bar? Um, no thank you.  Floor exercises?  I barely mastered a somersault, my cartwheels were crooked and roundabouts were ENTIRELY beyond my physical abilities.  Then there was the balance beam, the one thing I actually kind of liked and could obsessively practice almost anywhere.  The line in a parking lot became an imaginary balance beam.  The curb of a sidewalk was a chance for me to attempt walking on something narrow and elevated without falling flat on my face and breaking something. 

Sadly none of my practice paid off and almost 40 years later I'm still trying to master the balance beam.  Don't get me wrong, I can walk a straight line now and I don't (usually) fall off the curb; however, I do teeter back and forth when it comes to balancing the different responsibilities in my life.  It's silly because I don't have as many responsibilities as most people, which makes me feel guilty at how miserably I fail to balance what little I have.  No matter, consistency eludes me and I find myself repeatedly falling off the proverbial balance beam, trying desperately to put my life back together again Humpty-Dumpty style.  

It was easier when I was younger.  I was more driven and could push myself harder.  70-hour workweeks, 10-12 hours of BSF weekly, weekends full of social activities, volunteering at church?  No problem.  But now that I'm older not only do I lack the desire to push myself so hard, physically I simply cannot do it.

Years of not taking care of myself has led to some health concerns that keep me from living as actively as I once did.  My body is tired from years of see-sawing back and forth.  Will I treat it as a temple today?  Or will it better resemble the local garbage dump?

I was doing so well this time last year, but currently things are completely unbalanced in my life, again.  I find myself working late, neglecting my health and generally trying to do more than my body can handle.  Perhaps I'm in denial that this annoying auto-immune disease has taken up residence in my body, but it has and I must learn to deal with it so I can live a more peaceful life, not to mention regain my health.

I'm hopeful that with prayer, determination and rest I will regain the precious balance I've been missing lately.  If you struggle with balance in your life, then I hope and pray you find it.  On the other hand, if you've mastered the skill, can you please teach me?  I'm a little desperate!  ☺     

Diary of a Staycation~Days 3 & 4

Day 3~Woke up with a headache but I refused to believe it was a hangover! I skipped church and fell asleep again before rousing myself to get ready for a luncheon at the Mesicks' beautiful home. The food was superb and the company was great. Made some new friends (I hope!) and enjoyed good fellowship and conversation before heading off to run some errands.

When I finally made it home I was pooped and took a long nap. Finally I roused myself and headed to Serina's house for a late night movie with her and Gigi. We chose "The Men Who Stare at Goats" and laughed so hard, it was really funny! Plus it had George Clooney and aside from the eye candy factor, he has turned into a fantastic actor. After the movie Serina and I talked until after 1:00 am, way too late for both of us but something I've missed.

Day 4~Massage used to be a dirty word to me. I just cannot stomach someone I don't know rubbing oil or lotion on my naked body. Ewwww!!! It's just a little too intimate for my taste. And when their hands make their way to my neck, well it's all I can do to not scream out in terror, certain that I will be strangled. (Yes, I have issues.....) So why on God's green earth did I opt for a massage? Well, I was hoping to relax. Too much anxiety in my life lately has taken a toll on my health and I needed to find better ways to cope.

Well, thanks to Groupon.com (check it out, you'll love the deals) I learned about Fijian Barefoot Massage and was able to purchase 2 for the price of 1. Better yet, I could stay clothed and there would be no oil or lotion involved, just a nice lady's feet. Now I know it sounds weird, and I was extremely skeptical, but desperate times call for desperate measures. I entered the dimly lit room and laid on the mat while Jeni cleaned her feet and turned up the ocean waves CD. In no time I was relaxing as she was using her feet to literally walk all over me.

I loved it so much that I booked 2 more sessions, a 90-minute from my boss and the remaining 60-minute massage I had pre-purchased. I can hardly wait for how good I'll feel after!!

Here's the link: http://heelingsole.com/index.html

One Block At A Time

This week I had my (hopefully) final appointment with my foot doctor, aka podiatrist. Ugh, just admitting that I see a "podiatrist" makes me feel old! But I digress, the point of my visit was to determine when I would finally be free of my cast, affectionately nick-named Frankenfoot. After 3 months I am more than ready to wear normal shoes again. I'm also eager to start exercising, I miss my long neighborhood walks and it has been especially difficult to sit inside this week with temps in the 70s.

So here's the verdict: I can slowly begin weaning myself out of the cast beginning with 1 hour of freedom the first day, then 2 hours the next day, 3 hours the day after and so on. Dr. G also gave me the go ahead to begin taking my daily walks if I'm pain-free after wearing real shoes full time. I was so excited, until he told me to start by walking only one block.

What???? ONE BLOCK?!?! Seriously? I wondered if he was joking but no, he wasn't. He was very clear that if I overdid it again I would end up back in the cast. One block for a few days, then 2 blocks for a few days, then 3 blocks and so on.

I don't know why the healing process is so slow. All I know is I can only go one block at a time if I want my foot to heal properly. One block at a time to strengthen the muscle, increase flexibility and build stamina. One block.

It seems like most of the healing we desire is slow and tedious. Very few of us find instantaneous healing for whatever ails us.

Community healing comes from rebuilding dilapidated buildings one brick at a time. It comes from rebuilding tense race relations one friendship at a time. It comes from rebuilding the economy one job at a time.

Relational healing comes from one conversation at a time. It comes from building trust one action at a time. It comes from being known one story at a time.

Spiritual healing comes from one gut-wrenching prayer at a time. It comes from one display of grace at a time. It comes from one moment of worship at a time.

Emotional healing comes from one tiny step of acceptance at a time. It comes from one tear at a time.

But eventually healing comes, no matter how painful the process. It comes. Now if you'll excuse me I need to prop up my throbbing foot, I walked more than one block today. Oops! ;-)

Radioactive Fallout

The doctor looked at me and said, I think you have a stress fracture in the right metatarsal. You'll need a bone scan so I can see the extent of your injury. And just like that I was fitted for a cast and drove off to Concord Imaging, my favorite imaging center. They're nice and it looks and feels like a spa when you walk in, which helps calm me down. I'm on a first name basis with Alma now, we swap stories like we're old friends as she injects me with radioactive isotope. When she maneuvers my foot under the camera I refrain from crying out in pain because I have convinced myself that I really don't have a stress fracture but am instead just reacting like a big baby because I want some extra attention. Even though it really does hurt and the doctor himself noted that the pain was severe.

Then the isotope begins to race through my blood stream down to my injured foot. It pools in the exact location that has been causing so much pain and glows an unearthly white on the screen. And I know that I'm not overreacting. The proof is on the screen and I begin to cry. Somehow seeing it in black and fluorescent white gives me the permission I need to feel the pain and my foot begins to throb. When the initial part of the scan is over I cannot walk. Instead I hobble to my chair and fight the sobs that want to take over. And then I pull it together, put on my cast and drive to work.

5 hours and 32 ounces of water later I am back at Concord chatting with Alma. She compares the new images to those from my bone scan in April that revealed a diagnosis of osteoarthritis. This time the right foot definitely shows a new injury and it glows much brighter than the silly old arthritis, highlighting the inflammation. For the next 45 minutes I try to lay perfectly still as my foot is placed in odd positions so the scan can capture all angels for the doctor to review. As I lay there I continue to berate myself for not seeking treatment sooner, for thinking that I'm still 26 instead of 5 months shy of 40, for trying to be brave or ignore the pain until walking was out of the question.

I'm grateful that despite my stupidity the radioactive fallout of this procedure was mild. Yes the pain is severe, but the prognosis is good. I will be in a cast for 4-6 weeks but there appears to be no permanent damage. I will be forced to care for my foot and not abuse it by pushing it harder than I should. That means no more running or extensive walking, but instead biking or God-forbid water aerobics. It also means old lady shoes instead of heels, once I'm out of my Frankenstein cast that is. And my Frankenstein cast is huge - because in order to fit my ginormous calves I had to get a cast made for Arnold, not Angelina. Hey it ain't pretty but at least I already have a costume for Halloween!

My "Frankenfeet" - driving shoe and walking cast.

Brainless Conversations with God

Earlier this week when I hopped on the scale to check my progress in this never ending battle with the bulge I was SHOCKED to see that I had gained 3 pounds. Excuse me??? I've been living on rabbit food. I've been avoiding "bad" carbs. I've erased the word sugar from my vocabulary. I've been walking 4+ miles faithfully almost every day. I've been paying an arm and a leg to workout with a trainer who causes me physical pain. I've been really good, and I haven't cheated!!! How in the world did I GAIN 3 pounds???

At this point a rational person would have stopped and calmly considered the situation, but I chose "crazy, psycho woman mode" and decided that the Almighty and I needed to have a chat about how unfair all of this was.

Really. BAD. Idea. Stupid. Stupid. Stupid. And thus began another of my brainless conversations with God.

Me: I'm confused! I'm doing everything right. Why did I gain 3 pounds?
God: silence
Me: Do you think you could help me out here? I'm really trying!

God: silence

Me: You WANT me to be fat, don't you? You really don't care that I'm trying so hard, do you? Are you trying to teach me a lesson? Because this is a really cruel way to do it!!!
God: silence
Me: Why are you doing this to me???
God: silence
Me: Fine if you don't want to help me then I'm done. I'm tired of trying. If this is all I get then why don't I just go have a slice of pizza? If I'm destined to be fat anyway I'm going to eat what I want. So there.
God: silence
Me: Whatever. I knew this would happen anyway. Since I'm supposed to "give thanks in everything" let me just say thanks for all of your "help". Hmmffff.
God: silence
Me: Finally snapping out of "crazy, psycho woman mode" thinks, hmmmm, maybe I'm retaining water. When was my last cycle? Oh. Blush. That's it. I really hate PMS. God?? I'm really sorry please don't strike me dead. Thanks.

God: No problem, and you're welcome...

Yes, I know what you're thinking - "Watch out for lightning" and believe me I am! Sigh, maybe when PMS is no longer in my vocabulary I'll get it right. I sure hope so, I'm tired of being an idiot....

Turning Old

I knew it the moment it happened - the moment I turned old. It was last weekend while having dinner with friends. I found myself inexplicably discussing the results of my recent blood work. I did the same thing two more times last week and sealed my fate. Young people just don't do that! Since when did dinner conversation include cholesterol levels???? Since I turned old....

Of course, I've also noticed other signs of age. I now sport numerous "light black highlights" in my formerly jet black hair. I fear I'm beginning to resemble Lily from "The Munsters" because I have a definite white streak. Reading is torture if the lighting is not just right so I now use 3 industrial strength lights, making my apartment resemble a stadium. I also sense that bifocals are imminent because apparently my arms have shrunk and I am no longer able to hold a book at a far enough distance to actually see the words. Then there is all the creaking and popping that occurs when I stand up - especially if I've been sitting on the floor, but I'm not complaining because at least I can still get off of the floor!

If you happen to be one of the lucky ones who catches me lapsing into middle age lingo during dinner, tug on your left ear lobe or something to signal me to STOP IT. Subtly redirect the conversation toward a cool rock band or something young and hip and let me pretend that I'm cool.......and not turning old in a few days. Thanks.

Battle of the Bulge - Texas Style

They say everything is bigger in Texas, and I'm tired of lending credence to that statement. It is time for my battle of the bulge to end. I mean, the other morning when I woke up I was confused because I thought someone was in bed with me - but it wasn't someone else, IT WAS MY STOMACH!!!! THAT IS JUST GROSS!!!! I am not one of those women who loves herself no matter what she looks like - I FIRMLY (pun intended) believe that blubber should NOT be my fashion statement.

However, in admitting that I am in the midst of this battle, I have to say that I am worried about about what you will think. By telling you that I am trying to lose weight - AGAIN - I risk failing - AGAIN. And I HATE failing at any time, particularly in public. Failure haunts me. Especially when I try so hard, but just can't seem to get it right. Facing my failures in front of others is so - well - vulnerable. And those of you who know me well know how I feel about that! :)

It took me years to figure out why I was hiding beneath so many layers of fat. Of course I have many excuses (some are REALLY good too), but just recently I finally realized that in trying to control everyone and every circumstance in my life, I had failed to control myself. (Thanks home group and Cloud and Townsend!)

So now I am faced with a huge (literally) challenge. I must lose weight not just for my physical health, but also because I want to stop hiding. If I can't be beautiful, I would at least like to pass for cute again! But now it's scarier because gravity is involved. Certain things will never go back to where they used to reside! I've accepted the fact that I will not be skinny. I expect to have some leftover flab and cellulite. I know that the stretch marks aren't going away; I would say that they're more like a road map of all the places my body and I have been, some of which were really good, (I definitely don't regret all of the gelato and pasta I ate in Italy!)

I want my outside to match my inside and so far, so good. I am down 12 pounds as of this morning. I walk for at least 30 minutes every day, rain or shine. I am eating a balanced diet full of veggies and lean protein. I have cut back on cheese (sniff, sniff) and limited my diet soda intake to 2 a day (I DO blow that from time to time.) I also allow myself one square of extra dark chocolate every night. I plan my "cheat" days and I already know that on February 14, 2008 I will eat whatever I want! Maybe the good habits will actually stick this time.....

Overall I feel energized and happy. Each time someone notices that I have lost weight I do the dance of joy (INSIDE my head, I NEVER dance in public since I resemble Elaine from Seinfeld!!!) By surrounding myself with people who love me despite my physical flaws and obvious failures, I have found the courage to try to improve myself. Thank you for being part of my journey. Thank you for encouraging me and reminding me that I am too hard on myself. Thank you for making me feel special and loved and known. Thank you for helping me fight this battle - I couldn't do it without you.