May is Arthritis Awareness Month! Yay!
When most people hear “Arthritis” they think of old people with creaky and swollen joints. This is called Osteoarthritis, which is most likely caused by general wear and tear and of course, aging. However the vast majority of arthritis cases affect people far younger. These are Rheumatic diseases which causes the body’s immune system to attack the joints. It is most common for symptoms to show up in your mid twenties.
I first showed symptoms when I was 22 but my disease wasn’t full blown until I was 26 or so. It started with foot pain when I was in the army. I saw my first orthopedist towards the end of basic training. I was told that the pain is due to my flat feet and stress fractures. Throughout my army service I saw numerous orthopedists and was misdiagnosed each and every time. My pain continued, grew worse, yet I persevered. Once I got discharged, I took it easy physically, yet the pain persisted and worsened. It wasn’t until I saw a foot and ankle specialist that I was finally pointed in the right direction. After examining my numerous x-rays and bone scans as well as a physical examination he concluded that there is no evidence of stress fractures, that I don’t have flat feet and there is nothing mechanically wrong with my foot. He recommended that I see a Rheumatologist. I had other symptoms as well but never made the connection with my foot pain. The minor pain I was experiencing in my hand wasn’t due to my daily guitar playing. I didn’t even notice the red spots on my head. I was diagnosed with Psoriatic Arthritis. And that was the day my life changed forever.
I was put on anti-inflammatories and a disease altering medication. Neither helped and my condition deteriorated. My foot got so swollen and sensitive that I couldn’t even put on a sock without experiencing excruciating pain. Driving was out of the question. I couldn’t apply pressure on the pedals. My left foot started to hurt as well. Then my spine, my neck, and eventually every joint in my hips. Before I knew it I could barely walk without the assistance of crutches. I received a few steroid injections in my feet that enabled me to walk. Yet life continued to become a challenge. Sure I complained a lot, but I’m not sure my friends realized exactly how much pain I was in - physically and emotionally. Being diagnosed with a life altering, painful chronic disease that has no cure is a lot to deal with. It didn’t help whenever I mentioned arthritis I was the butt of all too many jokes. I know my friends just didn’t really understand what I was going through, but it was hard not to ignore them…
Two slipped discs and a kidney stone.
I have had my face bitten my a dog. I have dislocated my thumb at least three times. I cracked my head open on a brick fireplace. I have had severe nerve pain in my back due to pressure on the dural sac. I have broken my toe. I have been dropped on my head (as a teenager, not as a baby). I have had joint inflammation so bad I couldn’t even stand, close a fist or rotate my hips. And I have had two slipped discs. Though absolutely none of these instances remotely compares to the excruciating pain I went through on Thursday night. I passed a little piece of Satan called a kidney stone. It came on fast. Real fast. I initially felt a little discomfort and then the next thing I knew I was keeled over on the floor whithering in pain trying to get into a comfortable position. Absolutely unbearable. The pain was so bad that I vomited. Long story short. Went to hospital, received an infusion of fluids, had some x-rays and I will get an ultrasound later this week. Feeling like crap. And to top it all off the gears of my car busted this morning. Have mercy.
Give the kid a break!
Representing on Strong Island
Survived the flight though I’m feeling a bit gimpy. Feet are a bit swollen and the back aches. Been here for about six hours and still haven’t showered. Had a ton of emails to catch up on and am looking forward to actually taking a couple of vacation days. Tzofia was incredible on the plane. She slept a lot and barely made any noise while she was awake except for a few “ba ba ba’s” here and there. She has such a wonderful soul. She spent plenty time clapping, waving and smiling at everyone. She is such an angel. For sure our next kid is going to be the spawn of the devil.
Thinking about heading out soon to blow some cash (actually a gift card) on a new digital camera for the lady (she needs one for her blog) and a pair of bluetooth earphones for myself. There is a Target next door so I’m sure I’ll walk about with a bunch of crap I don’t need. Like a bucket of milk duds.
Goodbye Yom Kippur headaches!
Hey good kids. Been a good two weeks since I last posted. Apologies are in order. Since we are in the midst of the Days of Repentance I don’t think any time more than now would be more appropriate to offer apologies. So sorry. Some good news for arthritis sufferers like myself. Looks like those of us who take Arcoxia (a drug similar to Vioxx that is only available in Israel and Europe) won’t be getting headaches during the fast according to an American study on Yom Kippur headaches. We are however at a higher risk for getting heart attacks. Awesome! Can’t wait!
Jellyfish - All is Forgiven (MP3)
Grant Lee Philips - So. Central Rain (R.E.M. Cover) (MP3)
Blogging quiet due to back injury
Yeah, well my back is all messed up again. I reached for the remote control to change the channel and felt a horrible surge through my lower back. Spent Saturday afternoon in the emergency room (yay for morphine!) and have pretty much been in bed ever since. While I am feeling a little better, I’m not up for sitting at the computer for more than thirty seconds at a time. Hope to be back in a few days. I solely blame Celebrity Fit Club. If that god forsaken show wasn’t on, I wouldn’t have had to change the channel. Oh, and if anyone has any suggestions for dealing with chronic lower back pain I’m open to all suggestions. Except joining a cult. I’m not open to that.
Feeling like crap…as usual.
Pain is the word of the day. Think your joints swell when you fly? My toes look like mini-sausages, my back is strained, neck is stiff, I feel like I have rocks in the above the skin on the soles of my feet, my fucking hand hurts, I haven’t slept in two days and even worse, I missed the first two episodes of season 2 of Deadwood, my favorite show featuring gratuitous bad language. Visiting America (or flying anywhere for that matter) takes a serious toll on my body and it takes weeks to recover. Oh Arthritis how I hate you! But alas, I can see the light! Just two more weeks until Remicade eases my woes. How I wish time the fortnight would come sooner! Oh Remicade, how I yearn for your biologic, white blood cell altering medical juice in my veins!
I really, really, really want to get things going on the blog and the podcast. I kindly request a bit more patience. Seriously, just a few more weeks. Lots of fatigue, dull pain, swollen joints, warped toes and other nasty stuff. The temperature is getting warmer these days and good weather means less pain.
Less pain means a happier (and more mobile) Harry. If living with chronic pain isn’t enough there were even more factors that helped contribute to this season of shit.
It can only get better.
This year sucked
Well, this year was probably one of the worst ever for me. The year 1995 previously had that dubious honor. That was the year of the cyst and the whore. However, despite what you think you may or may not know about me, the two have nothing to do with each other.
On a positive note, this was the year that I finally found relief for my blessed arthritis. So I would like to thank Centocor, makers of Remicade for creating such a wonderful disease altering drug. However, if you can figure out a way to get your drug to work without having to take Methotrexate with it I’d appreciate it. Methrotrexate is bad, bad stuff and it makes me feel like shit. Anyway, I haven’t felt this well in years and thankfully, my horrible limp is gone.
May this year be better than the last.
Long story short…
I have spent the last week in the horizontal position alternating between cold and hot compresses. My back is still fairly fucked up. The pain was horrible and there are only so many painkillers one can take. I have spent the last several days in a cloud and am sick of this shit always happening to me. As if the damn arthritis wasn’t enough, now I have to deal with back problems too… Those of you who are healthy, treasure it. You don’t know how lucky you are.
Surviving Hadassah
So I had my fourth treatment of Remicade today at Hadassah Ein Kerem Hospital for my Psoriatic Arthritis. Now that I am premedicated to prevent a severe allergic reaction (see this entry) I am pretty much wiped out for the day. I got home at three and slept till about seven and could easily go back to sleep, but I refuse to miss Arrested Development. I get the treatment every eight weeks which means I am about 85 percent pain free for about 4 1/2 weeks and then the pain starts creeping back. I feel it first in the center of my spine and neck, then my right foot, then come the hips and then the left hand. It sucks. I think the pain came back fairly quick this time because of the rapid change in weather. Cold isn’t good for the joints. Blah.
Getting the treatment is quite a boring experience. Just sitting around with an infusion for five hours in the day clinic is mindnumbing. I bring a book and some music, but I always fall asleep due to the massive amount of benydryl seeping into my veins. The lovely wife always takes the day off and sits with me until I kick her out. She brings me lunch. Mmmm. Lunch. Today a lovely grandmotherly woman who I think goes in for some sort of daily treatment brought in homemade cookies and shared them with everyone in the clinic. Very nice and the cookies were delicious. Finding a good seat is always important. Because the clinic can get incredibly crowded, one must be strategic in terms of where one sits.
Things to do/avoid:
1) Sitting near the bathroom can be a blessing and a curse. Advantage: You are getting an infusion (it makes you pee - a lot.) and are sitting close to the bathroom, so you don’t to trek across the room and avoid other people’s infusion holders, doctors, nurses, random family members and the young women doing national service. Disadvantage: Everyone else in the day clinic is getting an infusion as well and needs to go to the bathroom as much as you do. There is an endless stream (no pun intended) of traffic moving past you as people make their way to the toilet. Both the sounds and smells can be noxious coming from behind the closed bathroom door. Also, many people dispose their toilet paper in the uncovered garbage can, not the toilet so the smell at times…ok…you get my point.
2) Coming to the clinic can be quite social. There is a group of folks who are obviously quite close. They must get treatments everyday because they knew everything there is to know about each other. Although these people seemed very nice, they wouldn’t stop talking all day. Now, I am all for chatting. But they wouldn’t let up. And every ten minutes or so another person would join their group. I was sitting quite close to them and I slowly felt myself being edged out as their circle grew. My personal space got smaller and smaller. I get very sensitive when I have a needle in my arm. I had a bad experience giving blood in high school. Some clumsy girl fell over my infusion stand and ripped the needle right out of my arm. It was excruciating. However, this event was overshadowed by Jamye’s passing out and breaking her two front teeth. The bitch totally stole my thunder. Anyway, to say I don’t like people touching me or my infusion stand while a long ass needle is in my arm is an understatement.
3) Avoid large families. I don’t want don’t want this to come out the wrong way but I avoid sitting next to Haredim. Generally, they have very large families and they almost always bring their entire family with them. Unfortunately, at least one of the kids is almost always unruly and smacks into my infusion stand causing me to not only great pain but great anger as well. Breathe Harry, breathe. Listen to David Cross or Lewis Black, they make you laugh. I am all for families coming together in illness and supporting family members but there needs to be some control on the amount of people allowed in that room. Or the family members at least need to take shifts.
4) Be nice to the nurses and doctors. The nurses and doctors at the day clinic are wonderful. When I returned to the clinic after not being there for almost two years, many of them remembered me, my name and my condition. I understand things get chaotic there, and at times patients can get quite demanding and be extremely rude to them. I am proud to say that my parents taught me well and I always try to act like a mensch. This helps because the staff are always apt to help polite patients before rude ones regardless of who showed up first.
So that’s my list.
So now it’s the day after and I still feel weak and everyone at work was telling me I look pale so I left and decided to finish up work here at home. I need a nap.
I found out yesterday that the day clinic will be moving once the construction of the new buildings are complete in a year or so. Which means three years. And by that time maybe some drug company will come up with a disease modifying suppository so visits to the day clinic will no longer be necessary. What?
The day I turned uncool
“The only time you really live fully is from thirty to sixty. The young are slaves to dreams; the old servants of regrets. Only the middle-aged have all their five senses in the keeping of their wits.” - Hervey Allen
“If you’re some punk of thirty-nine or less….suck it up, dude. It gets so worse.” - P.J. O’Rourke
Birthdays for me are always non-events. Nothing special happens, but I like it that way. We don’t have birthday weeks like the Gilmore Girls. For my thirtieth we initially planned on going all out for the first time and having a Rock and Roll Karaoke Party. I love Karaoke. I will make your ears bleed with my rendition of Led Zeppelin’s “Rock and Roll.” It will happen on my 31st I guess, because of events simply out of our control. A nice dinner and a really good present from my beloved wife is all I need. A new electric guitar or Playstation 2 would be nice. I’d even settle for surround sound speakers. And a cake. I better get a cake. I like cake. You can use a mix if you want. I won’t judge.
Turning thirty is an odd feeling. I am now officially in the twilight of my youth. I actually need to watch what I eat because losing weight isn’t as easy as just cutting coca cola out of my diet. I now get tired around 10:00 pm. I prefer the refuge of my couch with my wife and dogs as company than the table of a club. I can no longer hang out at a bar waiting two hours for a band to come on stage without making sure I napped earlier in the day.
My entire adult life has been spent here in Israel. I arrived as a naive 22-year-old knowing two people, not realizing how big a step I was making. I don’t have any regrets though. OK, I regret not calling my distant cousins when I first made aliyah, because now, after eight years, it would be just too awkward. Seriously though, no regrets. Because if I did just one thing differently, I could be on a completely different path and my life would be completely different right now (read Ray Bradbury’s short story The Sound of Thunder). I’m very happy where I am at. I’m big on ideas and plans, but I just need to either push myself to do what I want to do, or need a firm kick in the ass to get moving on them. It’s been a hard year for us and I have faith that things are going to get better and that the coming year will be a good one for us.
About a year ago a friend lent me the book The Day I Turned Uncool by Dan Zevin. It’s an hysterical read and at times, hit depressingly close to home. If you too are having a difficult letting go of your youth I highly recommend it. The chapters are broken down into confessions such as “I spend a great deal of time engaged in home-improvement projects,” “I joined a health club,” “I have turned into a ‘pet person,’” and “Going out has been replaced by going out for dinner.” Needless to say, the above confessions spoke to me. I’m OK with that though. I know what your thinking. Thirty? That’s so young! Just wait until you hit forty! That’s cool. Think what you want, but the past four years of my supposed “youth” has been robbed by debilitating arthritis, so cut me some slack. Only recently have I been prescribed a medication that is actually helping me, considerably lessening my pain and helping the old Harry get his groove back.
Happy Birthday to me, the late Charles Bronson, Roseanne Barr, Kate Capshaw, Adam Ant and my favorite B movie actor, Dolph Lundren. Oh, and my dad too. I was the best birthday present he ever got. Sure sucked as a kid though.
It was never just about me.
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