Let me start off by apologizing to all of you who have blogs that have been neglected by me. I love you all and your amazing awesomeness, but my time has been consumed with my recent endeavor of trying to do THE perfect impression of a couch cushion. Its been hard work that takes me hours upon hours a day to work on. My practice schedule has been grueling and Joe and the kids have even taken over most of my chores so that I can dedicate my time and energy to honing my skill. I take my meals (chicken soup) while I practice, I help with homework while I practice, and if I get any more invested in this process, I will me taking my potty time there too.
I know, I know…. I am a slave to my craft. I cant help it, that’s how I roll. Actually I creep, and limp, rolling is not on my To Do list just yet.
For the last month I have played the medicine tango trying to find the right forms of the right kinds of medicine in the right doses to get me back to doing my epic and highly applauded impression of a middle-aged lunatic. As I change my dosing in my Medication Reminder app on my phone, it offers me links to websites that discuss each medicine in detail. What. A. Mistake. THAT was.
One medicine can cause testicular swelling and pain. My first thought was “OMG I’m going to grow testicles? Then they are gonna swell and hurt??? Oh, hell no!”
Another side effect was loss of hair, but JUST for men, it includes facial hair and chest hairs. Bastards. Luck out every time. First we get stuck with periods, now this??? My head may go bald but Ill have to wax my lip and chest? I cry party foul.
Yet another was acne. Seriously? Acne? Hey, Heather, you have a potentially debilitating autoimmune disease, that there is no cure for, but we can try and diminish the symptoms and delay the joint damage. Unfortunately, your acne will be so bad you will probably wish you were dead. Buck up, kiddo. Add the pimples with the hair loss, pale skin from the mild anemia and inability to be exposed to sunlight for long periods of time and you can go out on Halloween as a Caillou hitting puberty!
Then there were the ones that REALLY made me laugh “brain zaps”-really? Is this actually accepted by doctors and clinicians as a accurate medical term? If you want to experience a brain zap without taking a highly questionable medicine for an undetermined amount of time, do what my sister did to me. Unscrew a light bulb from a lamp, turn the lamp on, then, in the sweetest most loving voice possible, convince yourself (or your little sister) to stick a finger in the socket. There you go. My gift to you. Your welcome. Don’t say I never gave you anything.
As the list continues, I find myself getting more and more hubristic. Night terrors??? pffttt… they ain’t got nothing on me. Night terrors are when you have 6 kids in your bed all vomiting at the same time at 3:30 in the morning before you have to get up at 6am and drive 100 miles to the hospital to see your daughter who is in a medically induced coma because she inhaled cucumber into her lung, blocking off 90% of her bronchi in one lung.
A night terror, is waking up at 11pm in a hotel room, 100 miles from home, to your daughter unable to breathe. You take her and her 3 sisters to the ER where she continues to succumb to pulmonary embolisms and slowly slips into respiratory failure. You then drive the three sisters the 100 miles home at 4am only to turn around and go right back, travelling 200 miles in less than 2.5 hours, to get back before the sick daughter is put on a ventilator.
Yeah, night terrors. Puuhhlease…. BRING IT!
Then there is the brief paralysis and the auditory/visual hallucinations. Now, don’t get me wrong, these things, taken in a certain light are awful terrible things. Really. But who hasn’t pretended to be sitting on the couch, sound asleep when you heard the pitter patter of a child coming to whine about someone breathing their air or thinking about touching their things? Sorry Kasey Mae, mommy cant stop Jordyn from looking at you with her eyes right now, I am temporarily paralyzed. Yeah, um Ryan, mom cant help you with your diorama on the sexual cycle of the jellyfish. That damn paralysis again. Dinner? You’re gonna have to order a pizza because right after I got this bowl of ice cream and glass of wine, I became temporarily paralyzed. Oh the burden of temporary (discretionary) paralysis!
How about the auditory/visual hallucinations? I’ve heard Kylies screams while having a bone marrow aspirate without anesthesia and I saw Ryan’s little body crumpled in the street, posturing and seizing, after being hit by a car. There is nothing worse left for me to see or hear. My luck, I’d hear things like Woody Wood Peckers maniacal laughter over and over in my head, or Ed McMahon telling me I won a million dollars, I just have to go to the bank and pick it up, at gunpoint.
Id be the one person to hallucinate that I am assisting the Labor and Delivery staff deliver Snookies baby. Talk about traumatic!
And the piece de resistance, unexplained weight loss. Let me clarify this: A.) there is no “unexplained” about it. You are SO sick for at least three days a week, the last thing on your mind is food. The sores in your mouth make it difficult to even drink. Your gums shed like peeling sheets of filo dough, and you wake up your lips are glued together with the strips of sticky buccal cells. Its sexy in the morning, I tell you. No wonder Joe closes his eyes when he kisses me goodbye in the morning. And when you are actually hungry all you can stomach is light soup and yogurt. B.) It should be called “anticipated and appreciated” weight loss. Because after the last few months of immobility and stress/comfort eating, weight loss is a pro, as opposed to a con.
All in all, the side effects could potentially provide me with some serious entertainment, considering what a sick twist I am. But at the same time, some serious disability. The fact that my doctor said to me that for now, I will probably feel worse before I feel better should have been a hint at what was to come, so I cant say I was surprised to find myself so sick, but as I begin to feel relief from the pain and find myself regaining abilities that the joint damage had previously robbed me of, it really makes me kick myself for not changing doctors sooner.
For years my other doctor told me she suspected I had Rheumatoid Arthritis, but my RA factors weren’t elevated. Come back in 6 months and we’ll test your blood again, she would say. In January when my symptoms became so severe, I called the office to get an appointment. Next available was in APRIL. Yes, April. That’s how they treat a patient of the last 5 years. Unless of course I wanted to go thru the ER. Then I would get whatever Dr. was on call, and maybe THEN I could get a sooner follow up appointment. I don’t have to tell you what I had to say about THAT. Yes, it started with F and ended with K and wasn’t fire truck.
Who knew, a week later I would have a 20 minute appointment with a new doctor and some less often utilized blood tests that would reveal I, in fact, had a different autoimmune disorder called Psoriatic Arthritis (PsA). And get this, I am one of the VERY few people to have PsA, WITHOUT PSORIASIS! Ain’t that some shit?
On my second visit, x rays in hand, diagnosis confirmed, she explained this disease to me, she said that we would need to be fairly aggressive as the diseases progression had already caused irreversible damage in my back, neck, shoulder, hands and feet. She gave me some pamphlets explaining about the chemotherapy and nerve blocking medicines I would be taking, along with the vitamin supplements I would need and suggested physical activities that could improve my joint mobility once the medicines started to work. She was serious, and apologetic. She was sorry to have to be telling a 39 year old woman with ten kids that she had this incurable auto immune disease. She was sorry she couldn’t guarantee me, now diagnosed and on a treatment program, a long life, pain free and fully functioning. The success of treatment for PsA is a crap shoot really. No rhyme or reason. For some it works, for some it doesn’t. If the first plan of attack is unsuccessful there are stronger “biologic” medicines we could try, but the side effects were stronger and more severe. The longer we avoid them, the better. And I sat there smiling. Grinning really. I’m fairly certain she thought I was nuts. No, really nuts. REALLY. After she gave me two cortisone shots in my left thumb and right shoulder and I did not even flinch, I was SURE she thought I was nuts.
On my 3rd visit, we discussed my experience with the methotrexate, and she doubled the dose. Thanks, doc, you’re a gem. NOT! We adjusted the Cymbalta, discussed new pains, she offered more cortisone shots. And with a smile on my face I passed. I said I’ll wait another few weeks. If I have a life time of cortisone shots ahead of me, starting off at three week intervals cant be good.
The Cymbalta is an anti depressant used to treat social anxiety disorders and neuropathic pain. It deals with serotonin and norepinephrine. Obviously, social anxiety is NOT an issue I struggle with. Although I highly suspect Joe wishes I did.
I sat there while she poked and prodded, grimacing when it hurt, giggling when it tickled. She asked how things were at home. I told her how the kids and I made eggplant rollatini for Joes birthday dinner and homemade coconut and vanilla bean cupcakes. She said it was cute how I smiled when I said his name and how she should really do things like that for her husband. I told her my husband is the driving force that we still need to “date” and “woo” each other so it never gets old. She said she was going to try that with her marriage too. We realized our birthdays are a week apart. Both about to turn 40, I’m excited for it, she would rather not think about it. She commented on my electric lime green Uggs and asked how to clean her daughters brown ones. Before I left she said “I will see you in two months. Unless you need me before then, just call, we will get you in. Remember, I’m here for you, if you need anything, please, just call!”
I just smiled.
I smiled because I knew she meant it. I smiled because I had played the piano the day before with TylerLee for the first time since Christmas. I smiled because I can use my pepper grinder again. I smiled because, although my hair has started to fall out, its very thick, and so far, unnoticeable. And if it does become obvious, who more to rock out the Gollum look than me? Seriously folks. The woman who forgets to get her hair cut for TWO YEARS? I obviously have no real attachment to my coif. I smiled because I have a loving husband and ten kids to inspire me to fight whatever comes my way. And if my daughter can handle an experimental stem cell transplant with nothing but grace and giggles at five years old, I can handle a couple of methotrexate pills a week with minimal bitching as I welcome my 40’s.
Life is good.
I am loved.
Laughter is by far, the best medicine.
And when it all boils down to it….
I am too blessed to be depressed.