No end in sight Enbrel: Week 6

I'm having a rough day....again.

For the past 5 days, I have had severe hip joint pain and searing pain in both ankles. I have a huge red blotch on my hip, and I can no longer fit my feet into my Birkenstocks comfortably.

I took my 7th Enbrel injection this morning.
I also took an extra meloxicam and 2 Alieve.

The pain ans swelling are almost unbearable, and my toes are numb.

Alieve does not relieve arthritis pain.

I will say that my chronic pain is gone. Those achy knees and my throbbing knuckle along with my ever painful wrist is non existent now. It's just this massive flare-up. Phil and I wanted to go to Six Flags tomorrow, but I'm pretty sure that won't happen. :(

Trust me. It hurts as bad as it looks.

Enbrel: Week 4

I'd like to say today that my life has changed because of Enbrel, but I can't. Not yet. On Wednesday, I'll take my 5th injection, and over the past few days, I've been suffering from yet another flare-up. This outbreak is affecting my right hand and my left knee. I spent most of the weekend on ice and elevation, and today I'm feeling the worst of it. I've also tried exercising my joints, and I think this makes the inflammation worse.

I can say that I've also had incredible days. Many, in fact, that I've had little or no pain at all. I was even able to get up a lope one day.

I await the days of no flare-ups patiently. I'm giving this six months.

A Little Off Topic

I have no smile.

I'm not depressed, I'm not mad, I'm not being pensive (or maybe I am). I am physically incapable of producing a smile shape with my mouth.

I'm also sick of being told to smile, because when I try, my mouth turns down into a frown or into a flat straight line.

People constantly ask me, "What's wrong?"

Don't ask to see my "pearly whites." They are not pearly, they are not white, and they resemble a shark's teeth. Sharks can't smile either.

Well, maybe not that bad.


I have to tilt my head to give the appearance that I am smiling in pictures. 






I am jealous of people who can smile.


I have tried every whitening product on the market under $500. and use whitening toothpaste twice a day.


The only remedy is $6,000 worth of braces.


This is my rant for the day.

High Heels and Flip Flops

I have cute feet. I'm not bragging, I'm simply stating a fact. They are somewhat small (when not swollen bulges of water), I like to keep them pedicured, and I have the cutest freckle at the bottom of my nail on my right big toe. They aren't flaky or smelly, and I've never mistreated them. I've always worn shoes that fit and accentuate the positive. I've always paid good money for shoes because I think that good shoes are worth the money, and more than anything, I want to be comfortable wearing them.

I have a love hate relationship with shoes. I have about 100 pair, but only wear a few of them for one reason or another. I love high heels. I love the look of them, I love different styles, I love to see my cute, painted toes poke out from them, but I can't wear them anymore. They simply hurt my already aching feet.

The last time I wore my favorite pair of heels was when I graduated with my Master's in 2007. I walked down Shorter Hill in the processional in torrential pain. I suffered through the ceremony, and made it until I met the photographer. I have one picture in my stockinged feet taken by the wrought iron gates, and it's my favorite one.I never put those heels on again afther that.

My most impressive spanse of footwear resides in the flip-flop/sandal arena. I have five pairs of Birkenstocks I still wear (one pair 20 years old and one pair 18 years old). I still wear the 18 year old ones. My Teva collection grows every year. My first Tevas died in a rafting accident, and I learned to buy sturdier ones, hence my second pair of purple Alps. I got those in 1996 for $110. My grandmother yelled at me for spending that much on sandals. I still wear them every summer. So far, I've only spent about $7 a year on them, and they are in perfect shape. Over the past 5 or so years, though, I have developed a taste for Teva flip-flops. I won't reveal the quantity of those, but I will say I have more than 10 pairs - I have over 1,000 pairs according to Phil.

The swelling and pain caused by my RA have limited me on my choice of footwear. Even my most conservative black loafers or short heeled mules cause me pain. And here I am now with my feet kicked up, shoes off at my desk typing, and dreaming of my Laura Ashley heels that I know I will be able to wear again someday. Sometimes none of my shoes fit, and I walk around bare foot or in my house shoes. I'm getting too accustomed to this. In a few weeks time, I'll be able to wear my high heels and flip-flops comfortably again!

Enbrel Day 2 - I Get a Cold

I wasn't going to write anything today because I woke up feeling unchanged. Nothing to write. As the morning progressed, I was told by a co-worker that I looked pale, and that was confirmed by two others. I took a look at myself, and determined that it's no big deal. I'm sure it has something to do with my immune system being destroyed.

At about noon, my head compressed, my sinuses closed, I began to cough, and I was angered. A cold. Any other day, I would have my lunch bag with my arsenal of Alieve, Alka Seltzer Plus, and nasal spray, but today, TODAY, of ALL DAYS, I made my lunch and walked out the door, leaving it on the counter.

You have to understand that everyday, in my haste to get away from Phil's recount of his past night at work, his recount of what he heard on the radio, him showing me the new "Hot Rod" magazine, him reading all of the junk mail to me, and him yelling at me to come in and watch the cartoons he's DVR's for me that I tend to forget things. Today was no different. He had already told me how many parts he painted, what color they were, who he worked with, what his co-workers joked about, Lance Armstrong, his radio morning show recap, the junk mail, recounting the dryer repair man's words, the weather report, he had to make fun of Karen Minten and Channel 2 News, get upset about my laundry being on the sofa, get upset about the TV dying, told me what I needed to do today (as if working two jobs wasn't enough)...etc...etc. He was chasing me out the door (I was 20 mins late at this point, because he was determined that I would drive through the middle of a tornado this morning) abd I ran for my car - forgetting my lunch bag.

I don't want to go to work tonight. In fact, I'm longing for the comfort of my own bed right now. I'm not tired, but I'm longing for some Vick's Vapor Rub, my humidifier, and some Nyquil.

I have a sneaking suspicion where I received this funk. Lesson learned: When on Enbrel, stay far away from the sick - even if they say it isn't contagious.

Enbrel: Day 1

February 23, 2012

Inventory of afflicted joints:

• Both ankles
• Both knees
• Both wrists
• Left elbow
• Jaw
• Most fingers and joints on the right hand except pinkie

Yesterday was a bad day. I left work early to get my legs massaged, got a bite to eat and went home. My Enbrel was there! I wasted no time and took the first sub-cutaneous injection. I think took my Plaquenil, Mobic, and half a pain pill, grabbed about 5 pillows and 2 ice-packs, elevated my feet, and iced them. It felt fantastic.

I woke this morning to no obvious change; however, I'm told that it will take at least two weeks to get into my system.

Swelling

My Excel is imploding right now, so I want to take a moment while it recovers thousands of pages to focus on swelling.

First, it's not a pleasant feeling. I put my shoes on in the morning - just like you do. Today, I'm having a flare-up. by 10AM, i had to take my shoes off - notice the binding marks on my feet. I also had to take off my watch. Looks like my left hand felt lonely and wanted to join the right.

Second, there is no way to control swelling. I can only ease it. If I were at home, I would ice and elevate, but I can't right now. The only thing I can do is kind of prop them on a box in front of me on a downward slant. I don't think this helps though. The only other thing I can do is take a trusty Alieve - DONE!

Third, I can't focus. With each little bit of inflammation, the pain sears in my joints and allows me to only think of it. Truly, I'm dreading the drive home and the constant movement of my ankles and wrists as I manipulate up Atlanta Motor Speedway (or I-75). I know I will be exhausted after the hour and a half drive.

I don't feel well today. Although my blood sugar is 115, and I've taken all the useless vitamins, NSAIDS and DMARDS. I feel like I'm at a stake burning - starting with my feet. My Enbrel should be here today. I won't waste a second taking the injection.

Gnarly, Dude

I'm not looking forward to becoming mangled. I do realize it's inevitable, but I'm not going to let the thought stop me now...while I can still move. Before I was diagnosed and having ankle pain, I looked down at my feet, and I thought to myself, "My feet look just like my grandfather's." They did. I saw his a lot. He didn't care for the notion of shoes, and neither do I.did take a picture (on my blackberry) and I thought I had one to upload, but I can't find them. I thought then that I had RA. I asked Dr Moss to test me, but he dismissed me as a hypochondriac, and he refused the test. I could have known four years ago. He could have lessened my pain and prevented my joints and bones from becoming misshaped. I don't remember a lot about my grandfather - or my past, in general, but I do remember his screams of pain. I do remember his gnarled hands, feet, and knees. I see my grandmother's hands now, and mine are on track to look like hers soon if nothing is done. So, for my chronicle of progression, I introduce into evidence Exhibits A & B - my hands:

This one is my right hand. As of today, 02/16/2012, I have joint damage in my right 3rd distal, proximal, and metacarpophalangeal joints, and can't curl it very well. My index finger started gnarling up last week, and I now have damage in my 2nd proximal joint. In addition to my fingers, my entire carpus joints are swollen and painful to the point that the pain never ends. I'm told this hand has become chronic (LOL!), and Dr Peller says it could be worse, but I can't imagine how.

My left hand is not as affected as the right. I have no chronic pain here or joint distortion yet. I only have flare-ups in my wrist and thumb occasionally.


I know what lies ahead, and I'm scared, but I'm not going to stop....yet. I ordered my Enbrel today, and I will have it next Wednesday. I'm a bit excited. I'll stop smoking this coming Monday - not looking forward to forced stopping. So this is close to the end of the baseline and the beginning of treatment. I hope I enjoy the ride.

Branded du dudu du du du..

I've been branded once. My sister, Kristy, stuck a metal skewer into a gas heater until it was glowing red and pressed it to the back of my thigh. You can still see the faint circle of scar back there, but there was also another scar - in my head. I'll never forget that. She laughed and ran around the house singing the theme song of "Branded" as I cried. So, when I tell you that when I have a flair-up, and it feels like a hot branding iron in my joint, trust me that I know what I'm talking about. The flair-ups are easy to spot - Swollen, red joints that have splotches and are rendered motionless by the shear volume of inflammation in the joint. They are not pleasant.

You can't always see pain. When you see stitches, an open gash; a scrape or bruise you can somehow sympathetically feel that they somehow hurt because at one point in your life you have experienced it. RA pain is a bit different depending on the stage. I escaped the first stage without a diagnosis. The comings and goings of dull, aching pains in my ankles and shoulders. Ice and elevation the cure for those fleeting few days of inconvenience.

When I was finally diagnosed in October 2011, I had already progressed to the next stage of the disease. I was having daily pain. Unable to sleep a full night, I would take Tylenol PM to put me to sleep, but I would still wake up in the morning feeling, and looking, like I had an hour's sleep. My knees feel like I've been kneeling on concrete for days, and there is rarely any relief to that feeling. When I wake in the morning, I'm so stiff that it takes 20 minutes before I can walk somewhat normally - I do take that time to waller in bed, just flexing my joints as I try to get a few more moments of rest. When I hit the floor, the balls of my feet feel like I've stepped on gravel with bare feet. I then have to walk that off. My most recent X-Rays show that I have 3 affected joints - my toes, my left knee, and my right bird finger. These joints never give up.

Anti-inflammatories and DMARDS do nothing to stop this pain. They merely calm the flair-ups. If I've been hateful recently (and you don't deserve it), then I'm sorry. I finaly got my prescription for Enbrel, so we'll see how I feel in a few weeks :)

Injuries

A few posts back, I had mentioned that I first noticed my ankle pain and swelling when I was attacked by Gus, my sister's ankle biting Corgi, and a year later had lied about tripping off the treadmill. Well, today is confessional. To Chandra and Barbie, my closest friends, I want to say I'm sorry for lying to you the most, and to everyone else I would like to apologize too. I just didn't want to look like a fat @$$ who swells.

I am a clumsy person. Who else could fall into a hot tub while sitting down and sober?

It's hard to explain to someone why you have swelling and pain when you have no recollection of an injury, thus I made them up. I was embarrassed to admit that I was simply hurt at no apparent cause.

The only real injury I've had was falling into the boat and spraining my ankle.

I didn't sprain my ankle dancing at the Panic concert last May (I couldn't explain the swelling and pain that had come on so rapidly).

I have never fallen off my heels (You may notice that I stick to flat soled shoes now).

I have not tripped into walls thus injuring my hand and wrist.

I did not have a broken wrist from shark fishing, BUT - although my hand was already the size of a balloon when I did go fishing, I DID tear cartilage in my wrist. When that injury never cleared up, I was sent to a hand specialist who knew immediately what was going on.

Doctors, Doctors, and More Doctors

The worst possible thing to do when you have a physical ailment is to Google it. I have pretty sound reasoning behind this - it's called leading. If you go to a doctor with swelling, and you've Googled TI diabetes + swelling, you may come up with kidney disease. If you go to the doctor with swelling and you mention kidneys, then they will look at your kidneys. My ankles and legs were swollen badly, and the swelling would not go away. There was no injury, simply massive swelling and pain. Pain as in I felt like my ankles were going to burn off my leg. Ice and elevation were no help overall, but did relieve some of the problem, but I would stand up and it was back to square one.

Back to doctors - Rome Dr says I've quit smoking and started to work out, so my body is "protesting." He refuses any tests or medication, and he tells me it will get better over time because this is all in my head. I seek refuge with my AL Dr. Here's the kidney line. We come up with this is a kidney problem. Of course whenever I'm going to the doctor, there is no swelling and no pain. It hides like an ostrich would hide it's head in the sand. AL Dr puts me on diuretics and tests my kidneys. I wait two weeks, and he wants me to see a urologist.
Rome urologist is an absolute a-hole. I was wasting his time. I had no kidney problems, no swelling, no pain - I'm a hypochondriac and sends this back to Rome Dr who notes this to me on my next visit.

Then one day, for no particular reason, the swelling came back. No injury in mind (but I'll use my usual excuse that I've fallen off my heels again) and I call my Rome Dr to schedule an appointment for him to take a look see. Can't get one for a week? OK. (I work 100 yards from his office at that time and they would not let me come over and just show the extent of the damage). In a week, the swelling has recoiled back to it's turtle in a shell state, and my Rome Dr calls me a seeker even though I've never asked for one pain drug.

At this point, I want to pause and give you a description of my ankles - They are twice the size of my normal ankles. It looks like I have a grapefruit taped laterally around. The swelling is into the top of my foot and I can feel it sloshing like Jell-O when I walk. My legs are swollen twice their size also. They are shiny and have split open in a few places. But it comes and it goes, and it was never there when I saw a doctor.

I had intermittent times of swelling and relief. There was a time when the balls of my feet were VERY sore to walk on, and I sought a podiatrist for it, but he couldn't find any problems either. My point in this entry today is that none of my doctors knew what was going on, and for 3 years I went through cycles of pain and relief. I was fat. That's all. I was swelling because I was fat. Lose weight and problem solved. WRONG!!!

It's Hell getting old, and I'm not even old, though I have the joints of an 80 year old. I want to write this to take into account the events which have lead up to my recent diagnosis. The lies, the cover-ups, the embarrassments that lead doctors and friends to believe that I was merely a seeker, that is, a person looking for drugs, when that was in no sort the truth.

I want to lay out there that I have Type I Diabetes, and I'm a smoker (over the years that status has changed several times). No doctor seems to look past those two facts with the exception of my Endocrinologist who will ask plainly, "What's the problem?" All of the other doctors would merely say, "If you lose weight and quit smoking, you'll feel better." or, "If you quit smoking, your problems will be solved." So I'll take you back to the May 2008 - when I stopped smoking.

The prior May, I had been mauled by Gus, my sister's ankle biting Welsh Corgi, and I had some minor swelling in my ankles (the most affected area). This went away, and it's 2008, I have a gym membership, I weight around 150, and I'm on Nicoderm patches, and I'm committed to going to the gym 3 times a week, and I DO! I'm not smoking at all, and I have made the commitment to get healthy. Wrong! Wrong!!! First of all, I can't stay on an elliptical machine for more than 3 minutes without my knees giving protest. My only thought is, "Boy, what a lard ass I am! I'm so outta shape! Three minutes today, 4 tomorrow." WRONG!!! I excused myself from the elliptical and got on a treadmill. 30 minutes later, sweaty and exhausted, I feel somewhat pleased with myself - no pain, no gain right. I decide to exit the treadmill. Do you know what tread legs are? It's that sensation that you're still on a treadmill when you aren't, and you try to keep up that pace on solid ground. As soon as the treadmill stopped, I got tread legs and tripped off the treadmill. I wasn't hurt at all; just embarrassed. I looked down at my sore ankles in utter shock. Both ankles had swollen out of my shoes. I knew it hurt to walk, but I was new to exercising, and I knew that I simply needed to walk the pain off, but I had no explanation for the nastiness of my ankles.

So, I drove across the road to urgent care, lied and said I twisted my ankles falling from the treadmill, got X-Rays - no sprain (surprise surprise), get an anti-inflammatory, and then go home to ice and elevate. The next day, the swelling and pain is gone.

This would be the first lie, the first embarrassment on the long road to discovering the truth.