02 July 2009
14 June 2009
The first predicament is plain and simple- and already stated. I am sick... again. It is getting really old. It seems that monthly now I am coming down with some sort of cold, flu, bronchitis, etc. It is never bad enough (knock on wood) to land me in the emergency, but it has in more than one occasion landed me back at my General Practitioner's, paying the $30 co-pay and then the other $15 for a prescription of antibiotics to clear up whatever the flavor of the month turns out to be. Every time I show more than an hour of clear sniffling or chest congestion , coughing, headache, fever, I am off the methotrexate for at least a week. Diseases- 1, Rachie- 0.
08 June 2009
21 February 2009
Okay so... it's been a while. But it wasn't for a lack of trying. I started a couple of blogs a while back and things just sort of got in the way. So I am just going to have to give you the shotgun version of events from the past three months.
It is said that kindness is shown through your actions rather than your words, and I believe that to be true. For Christmas this year, my love, Heather, got a hold of my friends and family and had everyone chip in so that I could buy a memory foam mattress. Memory foam is approved by the Arthritis Foundation, and I have to say I have noticed a tremendous difference in my back. She was able to pull all of this off not only while she was teaching four classes, but also without me even having an inkling that it was going on.
Her actions were committed out of true kindness, and now she will be able to reap the benefit also. We are moving into a house together next week, and we will be using my new mattress. It feels nice to want to live with someone again. We are both excited about the house we have found and look forward to playing in the dirt and gardening. I am excited that my cats will have many more windows to look out of. They have been staring at the walls of the other apartments around me for the last three years- this should be a visual treat for them...
I was recently accepted back into Chico State to work on my graduate degree in Communication Studies. I have applied for a TA position as well, and I hope that works out also. With the knowledge that I am going back to school on August 24th, I am finagling ways to keep not only my current job, but also my current health benefits while knocking off a significant amount of time I actually spend there...
The AS is sort of at a status quo. I recently had another appointment with Dr. Afrasiabi, and he has upped my dosage of methotrexate. I am struggling with my sudden, nausea inducing revoltion toward needles. I have never really been bothered by needles before, but whenever I think about the 1 1/2" needle going into my haunch every week, it makes me gag a bit...
There are boxes and crap all over my apartment right now, all waiting to be moved and I am sitting here on the computer. I stepped on a piece of glass at Heather's house today and cut the crap out of my heel. It thankfully didn't need stitches, but it still hurts like a mother. (What does "hurts like a mother" mean anyway? Of course, it could be short for mother fucker, but even then, that doesn't even make sense). Heather and I had a ton of errands to run today, so I hobbled through as best as I could, but by the time we made it to the eeee-vil empire of Wal-Mart, I couldn't bear it so I did one of the singularly most embarrassing things in my life: I rode around Wal-Mart in a motorized cart... eating a McDonald's cheeseburger. I was living a little slice of the American Dream right there.
There is a weird frustration that goes along with cutting my heel. Because of all the immunosuppressants I take now, I heal very, very slowly. A paper cut takes like two weeks to heal, so this deep gash in my heel is going to take forever. I have come mostly to terms with a lot of the changes my body has gone through, but I still get frustrated over it. I am going to have to grin and bear it all while trying to get everything packed up for the move...
The medical companies are sending out the goons for me. I haven't been able to keep up with them financially-even with insurance. I will pay them all off eventually, I just wish they could find even a smidge of compassion and patience in the mean time...
...perhaps I can just pop out a litter of eight babies, and then California will just pick up the whole bill...
28 November 2008
This blog post has been a few weeks in the making, but it definitely feels like it is the right time finally. It has now been over two months since I was diagnosed with AS, and the treatment was actually starting to work. During these past nine weeks, the way I have thought about chronic illness has been radically changed. I obviously have much more empathy for people with auto-immune diseases than I ever did before. I guess it is sort of like what Atticus Finch says to his daughter, Scout, in To Kill a Mockingbird: "You never really understand a person until you consider things from his point of view... Until you climb inside of his skin and walk around in it."
Whenever I heard the term "auto-immune disease" I automatically thought of HIV or AIDS. HIV is a disease that contracted- passed from person to person, so in my own blissful ignorance- or to be completely fair to myself- naivete , I never really considered the millions of people who suffer from other auto-immune diseases. Perhaps it is something I can blame on the media, there just was not a lot of press coverage on lupus while I was growing up. Of course, some of it is just plain old ignorance, though. I honestly had no idea that rheumatoid arthritis, psoriasis and multiple sclerosis were auto-immune diseases. And completely in my defense, can all of you who had even heard of Ankylosing Spondylitis before talking to me or reading this blog please raise their hand and come forward, because I sure had never heard of it before I found out I had it (broken record, I know).
So yeah... I now climb around in the skin of someone who has an auto-immune disease. This diagnosis lead me to a quasi-realization. Just as there are varying shades of gray a black and white photograph, there are varying shades of gray in the definition of sick. There is my personal favorite: SICK. That is when someone says something off-color, or is like a car accident, you just can't help but pay attention to them. For example, your friend tells you a racist joke and you find yourself laughing despite its nature. You say about that friend: "Josh has a SICK sense of humor."
This kind of SICK is more a state of mind than a biological state.
Right now, I am unfortunately experiencing the two other kinds of sick. I am Sick. That is a difficult thing to swallow. I have a chronic illness to which there is no cure. I have a pre-exsisting condition that insurance companies don't want to touch with a ten foot cattle prod. That is Sick with a capital S. It is something that defines part of who you are- just like my being gay or left-handed defines different parts of who I am. It is a THING; it is an ENTITY that resides perpetually within my body. The hardest part is that it isn't something foreign in my body that has made me Sick. It is just the way my chromosomes lined up this lifetime. My very genetic makeup has made me Sick. (I don't think I am in denial anymore).
Right now, I am also sick. There is a corollary effect between my being Sick and sick. I have sinusitis and bronchitis. I got sick because the drugs I am taking to lessen the effects of my being Sick have compromised my immune system. As you have probably deduced, being sick with a lower case "s" is when you get the cold, or a flu or even bronchitis, pink eye, and ear infection, food poisoning. This kind of sick only lasts a few weeks, maybe a month if you are really unlucky.
Because I am sick, I cannot have any methotrexate injections that help my being Sick. The methotrexate, for all its skull and crossbones warnings, is actually really starting to work. I am (was) really starting to feel a million times better. I started to feel better than I knew I could feel.
I am not really sure when I will get another methotrexate injection. It won't be very long from now, because the bronchitis will go away within a few weeks. When I am finished being sick, I can go back to being Sick... and I am okay with that.
23 November 2008
That is the rut I am stuck in right now.
I have decided that I do not actually have Ankylosing Spondylitis, and it is only a matter of time before my doctor realizes that my test results were mixed up and those CT scan images and X-rays were, um, misread. I can take off the medical ID bracelet, and years from now, I can laugh with a little embarrassment "about that time I thought I had a crippling, debilitating autoimmune disease."
They will let me know about this mix-up any day now...
Proof? I got my new round of blood tests back. My white blood cell count is good, I am not anemic and my liver is fully functioning.
I guess all that really means is that the methotrexate hasn't become a toxic substance to me.
Raynaud's Phenomenon. Heard of it? Neither had I. Sounds like it could be something that occurs when a star supernovas... or maybe it is something spectacular that happens during the Tour de France.
It is pretty much cold feet... and cold hands. I could get into a huge scientific explanation, but I'll just say it is a problem with circulation- it is seen a lot in people with autoimmune diseases- like arthritis. So I have cadaver hands and feet... oh and the tip of my nose. Don't ask, it's just ice cold most of the time...
I have been on methotrexate for almost a month and a half now. I spoke briefly with Afrasiabi on Thursday, and he said that right now would be the time that I would start to see the drugs working. Um... okay. I am not as stiff. Does that count? My legs still feel like I have been beaten. Is that a problem?
He mentioned Enbrel and Humira again. I mentioned my health insurance not covering it again. He mentioned they would really be helpful. I DIDN'T mention that I couldn't afford another $1200 a month out of pocket. I DID mention the sulfasalazine he wants to add to the regimen (because it is A LOT cheaper). He mentioned that we would talk about it during my next full check-up. I mentioned that'd be nice...
Turns out that sore throats are now a BIG DEAL. I told Janice, the head nurse, I had a sore throat, and that resulted in a full check-up- ears, nose, throat, temperature- before I got my weekly needle to the butt. Nothing exceptional seen to be construed as the beginning of sickness, HOWEVER...
What is the normal body temperature of a human?
What was my temperature when it was taken on Thursday?
Doesn't that mean that I am just about dead?
None of this really matters, though, because I don't actually have anything wrong with me...
Someday (soon, I hope) I will finally move to acceptance. Until then, move along folks, nothing to see here.
16 November 2008
First, it seems, that there was a double failure in the process of not only filling my prescription, but also in the administration of the methotrexate. Walgreen's had accidentally filled my prescription with "preservative free" methotrexate, and the nurses at my doctor's office didn't pick up on it. Preservative free methotrexate is a one time use only; after it has been exposed to air, it starts to go bad. As I just mentioned, the nurses didn't catch that little detail, so I had two more shots with that vial of methotrexate. In essence, I was having a spoiled cytotoxin injected into my butt.
Then, to add insult to injury (quite literally), the nurses were not using a long enough needle to inject it properly. It is supposed to be an intramuscular injection, but the SPOILED methotrexate was being injected subcutaneously- which is sort of okay, but it is harder for the body to absorb. That might actually be a blessing in disguise, because if rancid methotrexate was being injected properly into my gluteus maximus, I can only imagine that it would've made me a lot more sick than I was.
These two things, though, do explain my curious reaction that occurred almost immediately after the injection. About thirty seconds after the injection, it feels like someone had just reared back and kicked me in the ass. It would throb like nothing else, and then after about a half-hour the leg supporting whichever cheek was injected would cramp up worse than I could've imagined. The nurses were concerned about this reaction, because they couldn't recall whether their other methotrexate patients had the same reaction. It never occurred to them to check to see if there was something wrong with the methotrexate. It also never occurred to them that the needle they were using wasn't piercing my considerable (yet hidden) layer of fat on my backside...
...Long story short...
Thank heavens for the head nurse at Dr. Afrasiabi's office. She has assumed that the nurses she oversees would know what "preservative free" means, or what size needle to use. It just happened that when I went in for what was to be my fourth shot, she was the only one available to give me my injection. It was also a coincidence that it was the visit where I had my prescription refilled- and Walgreen's once again filled it with preservative free methotrexate.
Immediately, the head nurse, Janice, noticed that it was the wrong methotrexate. I told her that was the same stuff her office had been using for the better part of the last month. I was actually pretty surprised, because she was really pissed. It was then that she revealed that they were using the wrong length for the needle. She said she would call Walgreen's immediately, and then re-train her nurses on what the difference between an intramuscular and subcutaneous injections are.
That injection went well. It didn't really hurt and there were very little side effects. By the time I made it home, there was a message on my answering machine from Walgreen's letting me know my prescription was ready for pick-up.
I have had two injections since then- with a longer needle containing "methotrexate- containing preservatives." No more pain after the injection, and very little side effects. Janice has decided that she will give me the injection from now on. I guess probably because if I really wanted to, I could've screamed bloody murder both on the part of her nurses' incompetence and the negligence on Walgreen's part.
The thing is, and I guess I could ask, or at least google it, is what exactly is a immunosuppressant containing hydrochloric acid to stabilize it using to preserve it? I wonder if it is the same stuff that Hostess uses to preserve Twinkies. I mean those things last forever.
It is sort of working, I am not as stiff, but then again, I am not ready for the Ironman triathlon in Hawaii quite yet...
28 October 2008
Interestingly enough- and it might seem totally obvious to some of you out there- that when the methotrexate starts to wear off, so do the side effects; but the pain comes back. So I am not incredibly nauseous, headachy with a lack of appetite or complete apathy toward most everything- I just can't really stand or hold a pencil for more than about five minutes without wanting to scream. This sort of puts me in a rock and a hard spot (there's your cliche for the blog, Heather).
I know I need to be patient. The side effects are supposed to subside when I get used to the drugs, but the problem is which is worse: the pain or the side effects? The obvious answer is the pain, because that is inevitably going to get worse unless I have it treated. I am just getting frustrated with the whole thing. I spend half the week sick from the meds and the other half of the week in pain. Pick one?
For some reason, I hear Yoda in the back of my head: "Patience, you need."
Yes, thank you, Yoda, for your amazing amount of wisdom during this difficult time. I understand that I have to be patient. I also understand that this isn't your run of the mill antibiotic that might cause a yeast infection if you aren't careful. I am playing with some serious drugs right now, so I should be lucky that the only side effects I have experienced so far are mild to say the least.
There is a underlying hesitation with all of this also, though. Last week when I saw Afrasiabi, he mentioned that after I get used to the methotrexate, he is going to start me on sulfasalazine. Lord, have mercy, not another one. This one should be fine, except for that part where it says it might turn your urine and skin orange... great, I can be a fucking Oompa Loompa for Halloween next year.
The hesitation is, if I was a little to vague with the Oompa Loompa reference, is that I am getting a little fatigued with the side effects. I just feel like I go from drug to drug, getting used to a side effect, and then I am passed on to a new one- and this didn't just start with Afrasiabi, either. This started back with my general practitioner, Dr. Ricci, who will throw a pill at anything.
"I think I am having an alien baby."
"Here, try this pill."
"I just threw up my spleen."
"Here- here's a free sample, tell me how it works!"
So after years of this pill and that, I am relieved to finally have an answer to what in the hell is wrong with me, but it is still more of the same with this drug and that. The positive thing about all this is I get the feeling that Afrasiabi has this master plan in place when it comes to my treatment, whereas Ricci just tried whatever drug was on his mind at the time.
"Here, codeine will do the trick!"
"Dr. Ricci, I'm allergic to codeine."
"Oh, that's right! Take a Valium!"
Yoda is correct. I just need to have patience, and for a while, I am going to have to concede to some compromises.
Just keep your mouths shut if the next time you see me, I look like I am the love child of a carrot.
22 October 2008
The bad news is everything that has already been stated above.
I keep hoping that I am going to wake up from this bad dream, but every day, there is something else that makes it more and more real. Yesterday was the rescheduling of the rheumatologist's appointment I accidentally missed. The day before, it was the hour long conversation I had with my chiropractor- which was informative, but I can't help repeating over and over in my head one of the things she said: "Those kind of drugs take ten years off your life." That quote is completely taken out of context, because she was telling me about alternative treatments that could help cut that number down a bit, but we all know how the mind works: we hear a snippet that just embeds itself into the folds of your gray matter and won't go away. All the while, there is the dull throb of this and the ache of that playing out in the background of my life.
Mixed in with the mail that brought me my pretty, shiny bracelet were two pieces of mail that were funny in that not so ha-ha way. The first one I opened was from a company named Meridian. My first thought was, "uh oh, who stole my identity this time?" However, it turns out that Meridian is a company that does independent medical surveys. It seems that Anthem-Blue Cross hired them because I had so many medical bills in such a short amount of time, my insurance company thought I might've been in an accident of some sort. It is literally a note/survey on behalf of Anthem-Blue Cross to make sure that I am okay, and to see if they really need to be paying this much out on me, or if we can pawn this off on some other poor soul.
Sorry, Anthem, this is all yours. Send a thank you card to Meek's for choosing you as our PPO.
The second interesting piece of mail was a statement from Anthem-Blue Cross. I am so used to seeing those, but this one seemed a little out rhythm with my doctors' appointments. It was a statement that one Stephen Vanucci, MD had billed out to my insurance company. Who in the hell is Stephen Vanucci? I have seen A LOT of doctors in the past two months but NONE of them were close to that name... oh wait... that's right, it is probably one of the doctors they sent my biopsy to- the biopsy that turned up ABSOLUTELY NOTHING. No big deal, just add it to my running tab.
I was proactive tonight, though. I remembered to tape a note to the bathroom mirror to remind me that tomorrow is NOT a folic acid day. I cannot take the folic acid on the same day I get injections, and Thursday is pretty much going to be known as injection day (except for Thursday, November 27th, because I don't think the turkey is going to want to shoot me in the ass, although that would be just desserts actually). Woo hoo... that means if my "Thursday calculations" are correct, I am going to get a birthday injection in two weeks! Score!
In other news, I went to the FDA's website last night, because I wanted to hear from our glorious government all of the ins and outs of this wonder drug being injected into my rump once a week. It turns out that methotrexate was approved by the FDA back in 1959. Surprising to find out that it is going to have it's half-century birthday soon. The most interesting piece of information I ferreted from the twenty-seven pages published on methotrexate was that it is cut with HYDROCHLORIC ACID to help stabilize the pH value of it.
You have got to be fucking kidding me!?! I am willingly letting Nurse Ratched force hydrochloric acid into my body? (Sorry to Dr. Afrasiabi's nurse, she isn't nearly as twisted as Ratched was... at least I don't think so). Of course, that does completely explain why it strongly advises to NOT get it on your skin.
It is supposed to help. Keep telling me that. It is supposed to help. My spine, my joints, my tendons, my ligaments- they are all getting stronger. It is supposed to help.
Someone pinch me.
18 October 2008
First I have to apologize. I sort of went off on a rant there about health care and how I was getting screwed (and yes, I still sort of am), however, Thursday the medical insurance gods and goddesses were smiling down upon me. Besides getting twice the amount of contact lenses I expected originally, I also found out that it is only going to cost me about $7.50 a month for my methotrexate and folic acid- that includes the weekly visit to the doctor's office to have a nurse look at my derriere and put a needle in it.
With that said...
It has now been three days since I got my first shot of methotrexate to the butt. I was pleasantly surprised by the low, low cost of such a nasty drug, but I was still rankling over the thought of having to drive over to the "olde towne Philadelphia" knock-off, Philadelphia Square to have some nurse shoot me up. However, when Heather read on the precautions Walgreen's supplied for me that if this drug should make any contact with your skin, it is to be washed off immediately as it can cause irritation and burns.
This is going IN my body?
By all means, let a nurse handle it.
So the nurse comes out in a pair of gloves that look like she is going to be handling sulphuric acid, and tells me she is ready for me. Great.
She leads me and Heather into an exam room, where she has the syringe, cotton swab and band-aid all ready.
"Where does this shot have to go?" I asked her.
"In your hip." (Translation: in my cheek... and not the ones on my face)
So I get to alternate cheeks each week, which is something of a let down seeing as how I was hoping to make patterns with the injection dots- like those old Lite Brights we used to have as kids.
There- of course- was the stick of the needle, but for a drug that sounds like it will leave you disfigured and an outcast from society if splashed on your skin, it really didn't hurt going in.
"How much is the co-pay?" I asked her as my lower half was completely clad again and we were walking out.
"Nothing, it is part of the prescription."
The side-effects are mild- fatigue, nausea, headaches- but I have noticed they all but disappear when I take some Excedrin and my folic acid. As for the pain- still very there. Most of the information I have read about methotrexate said that even though it is a relatively fast acting drug, I probably won't see any real difference for several weeks. However, this new regimen that is really cheap with only a little humiliation and mild side-effects gives me hope. (Sorry Pema Chodron).
Even with this last thing left in Pandora's Box (that's the hope thing, for all of you who aren't up on your "Edith Hamilton's Mythology"), there is one side effect I was not expecting. Every time I think about how I am no longer able to enjoy more than one or two beers a month, I start crying. (Like right now, just typing it is making me get all teary-eyed and ruin my contacts).
Contrary to popular belief, I have never been a big drinker, but I do enjoy a beer after a long day, one too many margaritas in a cozy cabin in Almanor, and that amazing glass of wine from the bottle I had on the rack for three years... and now that's gone. I love collecting wine, but looking at them now just makes it even harder, so I have decided that I will be allowed two glasses a month, until all of the bottles are gone- then I will dismantle my wine rack, and put it away for a future date. I know it is for my overall good, but it was just such a sudden change, and something that I now realize I obviously wasn't ready for.
The bright side is that I will always be the designated driver, I will have more money because I won't be buying beer or wine, and most importantly, I might just have a chance at a future where my constant pain is a thing of the past.
Of course, it doesn't help that I have to look at the big, beautiful Sierra Nevada Brewery across the street from work everyday... they do serve good food there, though.
Another change I wasn't really prepared for is a little more obscure. Last night, I ordered my very first medical ID bracelet. It's pretty sweet, and super personalized, but as I was filling out the information and realizing that I needed ALL the room on both sides of it (I've got some pretty serious drug allergies, too), it hit me that I felt really old and sick. While it is true that there are A LOT of days where I feel like I was beaten with a composite core softball bat, most of the time I don't realize that there is something WRONG with me.
Now, while it is an absolute necessity for me to have this bracelet in case of an emergency or accident (gods and goddesses forbid), it will be a constant reminder that there is something wrong enough with me that it needs to be identified on my body. Once again, a change I obviously wasn't ready for.
I did, thankfully, reach out for help and mention to my girlfriend that I think I need to speak with a professional therapist that deals with chronic illness. She completely agreed, and got a list of THE BEST in Chico from her therapist. There were four different therapists listed on this cute little pumpkin post-it, and Monday, I was going to call them and set up a test drive.
I lost the pumpkin.
Everything just seems to be happening so fast. Two months ago, it was a tentative diagnosis of fibromyalgia. Five months ago, it was just a stiff back, migraines and leg cramps. A year ago, it was depression. Five years ago, it was growing pains.
So many changes... what will change next?
14 October 2008
I will admit fully and freely that I have not seen Michael Moore's documentary, "Sicko," yet. However, I do know what it is about and while I have the utmost sympathy for people who have been royally screwed by our completely fucked up health care system, I had not yet actually had the pleasure of being bent over and sent home after without a kiss or goodbye... until recently that is.
Obviously, this whole collection of blog postings is my journey with a chronic disease, so of course the health care industry is going to be included in the mix. However, right now, I am so frustrated with our jacked-up health care, I just want to go outside and scream.
My friend, Larry wrote a blog for the Huffington Post a while back which states "that just under half of all people filing for bankruptcy met the definition of "major medical bankruptcy."" Now I am not by any means saying that I am on the verge of bankruptcy, but I am definitely reaching a point where I am starting to wonder how this is all going to be covered- and I am considered to have excellent medical insurance.
Today I received a statement from Anthem-Blue Cross for the CT scan I had to have on my pelvis and spine. I was told at the time- by both my rheumatologist's office AND North Valley MRI/CT- that I was not required to obtain prior approval from my insurance company for the procedure. I am sure you could imagine my surprise when I opened the statement to see that I owed all $635.00 of the scan- because I did not get prior approval.
This bill was almost the tipping point, but really that time came about two hours later- something I will get to in a minute, but first I will finish up about my relatively expensive CT scan.
Anyway, this latest medical bill came on the heels of me finding out that I am not allowed to give myself the injections of methotrexate each week, but rather, I am expected to go to the doctor's office and have them do it for me. Oh, but don't worry, it's only about $10 a week... not including the actual price of the prescription. Okay, so bear with me, let's do the math: $10 a week for the office visit (not including the $30 check-ups every three weeks). Minimum $30 a month for the methotrexate and folic acid (need that so my hair doesn't fall out from the methotrexate). Nine blood tests at $7 each to make sure my liver isn't failing and I have enough white blood cells to stay alive. So if my math is correct, that would be $520 for the office visits, $510 for the check-ups, $360 for the prescriptions and $63 for the blood tests. All told, that equals $1,453.00 a year- and that is not taking into consideration the other THREE MEDICATIONS I TAKE DAILY AND FOUR DOCTORS I HAVE TO VISIT ON AT LEAST A BI-ANNUAL BASIS.
Speaking of the methotrexate, the tipping point I mentioned previously, came when I got an e-mail- not a phone call or voicemail- from Walgreen's making a vague statement that there was a problem with my prescription and it had not been filled, even though I turned in the prescription three days before I needed it. I called and found out they don't carry methotrexate injections in stock, so they had to special order it- it should be in sometime tomorrow between ten and two.
"That's really great," I told the woman on the phone, "but I am supposed to get my injection tomorrow at nine."
I could almost see her rolling her eyes and shrugging.
"Well, sorry, but it usually doesn't come anytime before noon, so give us a call around then, and see where it is."
Son of a...
So now I have to HOPE they get it by two, then I get to rush back from Redding, pick it up and run over to Afrasiabi's office by five so they can inject me- for the low, low price of $10. $10 for three minutes... what a deal.The most discouraging thing about this is that I actually do have medical benefits- really, really good medical benefits, that I pay a fair amount for. This is so frustrating for two reasons: one, I pay through the nose every month for medical insurance, just to have claims denied, and; two, I feel my aspirations becoming pipe dreams.
It is only because of my job and health benefits that I am even able get the medical attention I need right now. I have had several different health plans at other jobs, and I must admit that Anthem-Blue Cross is one of the best so far- but that sort of pigeon holes me. I had set the plans in motion to attend University of Oregon in the fall of 2009, but that is now all but out of grasp. If I were to leave my job for school, I would have to not only figure out how to pay the $17,000 for tuition, but then find the money for room, board, and of course, those pesky medical bills- without insurance. While U of O might be out of reach, I know I can somehow still swing it if I attend Chico State. I will not let this disease destroy my academic career like it is trying to destroy my spine.
I am just so discouraged right now. My legs are in a vice, I can't hold a pencil for more than five minutes, and the stack of bills is getting higher and higher. Today was a bad day.
Tomorrow will be better.
06 October 2008
While I am sure I could start back almost three weeks ago when our store began the marathon of inventory prep, I think it is better to just ignore the buzzing fly that was my job-with it's myriad of interruptions and annoyances that shouldn't an issue- but nevertheless added to my overall stress level. Te reason I am ignoring it, is because I decided to write this blog more about my experiences with AS and the ripple effect it is causing in my life. (This will be contradicted later, when I have much more interesting things to talk about that really have no relation to spondylitis).
I found out about two weeks ago that I do indeed have AS, and started with the initial blood test, blah, blah, blah, but... It seems that I had a rash on my back, and Plaquenil can cause a rash. So I let the doc take a look at it.
"That is not from Plaquenil," he states.
So he sets me up with a dermatologist for the next day. I go to the dermatologist, they take a scraping, tell me it's really nothing, gives me some drug to kill it, the end... But...
I figure while they are there, I might as well have them take a look at the "skin condition" I have had on my chest for about the last twelve years. There is nothing more enriching in a person's life than to have a total stranger in a lab coat poking and prodding at your boobs- trust me, it's true. She can't figure out what the hell it is, so she brings in another dermatologist, so now I have TWO people in lab coats, poking and prodding, while the assistant looks on. HE doesn't know what it is.
"Do you mind if we do a biopsy to see what we've got here?"
I am thinking in my mind "biopsy"-like a needle and them getting a little fluid, so yeah, sure, biopsy away.
I initially became suspicious when they made me sign a waiver stating that if there was any complications from the surgery, like infection, that I wouldn't sue. Long story short, it was NOT a needle biopsy, they freakin' apple cored my boob! They took a 4mm by 4mm chunk out of my right boob, then stitched me up and sent me on my way- setting up an appointment a week later to remove the suture.
"We should hopefully have some results from this biopsy by then," they tell me on my way out.
Dazed and confused (there's your cliche for the blog, Heather), I go back to work, dealing with issues that were way beyond my patience threshold. I was excited, though, because Heather was coming back from being in Hawaii for a week, and I had definitely missed her face. Also, we were getting closer to our planned trip to San Francisco where we were going to see the Broadway production of "Spring Awakening." It was to be a welcome change of pace from the drudgery I have been dealing with during the two weeks previous.
Saturday rolls around, and as we drive out of the cold wind and rain that had socking Chico in, we were pleasantly greeted by a mild fall day in the Bay Area. We easily navigate our way to the parking garage nearest to the Curran Theatre, I score a nice spot on the sixth floor, lock all of our luggage in the trunk and head off to absorb some culture and music.
In the elevator going down to the lobby of the parking garage, I realized that I had left my cell phone in the car. While Heather encouraged me to go back up and get it (I am co-dependent on my phone, I need it on me at all times), I told her that I wouldn't be using during the performance and that this would be a good exercise in control for me.
The play was amazing, we were all amped up afterward, talking excitedly about this part and that; pay for the parking, go up to the sixth floor, walk to the car. Strange, the car's unlocked. Stupid, stupid Rachel, don't leave the car unlocked in the city, you're lucky nothing was stolen. (There was still junk all over the seats).
We get in the car, and immediately I stick my hand in the compartment where I had left my cell phone, and it's not there. A twinge of panic tingles in the back of my head. I ask Heather to call my phone to see if we can hear it. Nothing.
We drive all over San Francisco to get to Heather's friends' house, and park on a side street. During our cross-city trek, I have convinced myself that I have put my cell phone in the trunk when I moved all the luggage. The moment I park the car, I jump out and pop the trunk knowing that my phone will be right there. Except nothing is there. Nothing. Just my Rollerblades.
There's nothing but test pattern going through my mind for a split second. Never mind the cell phone, our luggage is gone. All of it. Gone. No clothes, no toothpaste, no underwear, no cell phone.
The long and short of it is that we were robbed. We still made it to dinner with Heather's friends. Really, what was there to do? There was no damage to my car, so the SFPD wasn't going to come out, I just had to call in the claim.
I have to say, it was a great practice of non-attachment, mostly because I had my material possessions detached from me on that trip.
I spent the rest of the weekend in the same clothing (I bought underwear, I do have boundaries I just won't cross). I had a great time at Point Reyes the next day, walking in the wake in dress slacks. It was surreal and somehow cathartic.
I miss my stuff, but it's just stuff. I have insurance that covers all of it, so in time it will all be replaced.
It was more of a reflection of how I handle the things that are thrown at me in life. I am not sure how to handle the spondylitis. There are days when I feel pretty good and I forget; then there are days like today where every movement is a reminder. My apple coring- or should I say biopsy- has turned up nothing. Three different laboratories can't find anything wrong. I have to go back to the dermatologist in a few weeks, but really, it is more of just a nuisance. In the scheme of things, having our luggage stolen is a minute setback.
I just have to keep reminding myself that when I am jonesing to send a text message.
This series of events have been at the very least humorous- laughing at myself is the least I can do. I know that many of you might not see the previously told events as amusing, but I have to laugh. It is just the universe putting things into perspective...
01 October 2008
The lovely and wise Michael suggested that I blog- I guess as a sort of release. He said that when his brother-in-law was going through treatment for cancer, blogging helped him. I am not really sure if this will help me or not, but I know that I don't want it to seem like I am fishing for pity. (Not to say that Tim, Michael's brother-in-law, was looking for pity, but rather that I don't really want to draw unnecessary attention to myself). Also, I figured that I am terrible about telling the people I am close to the things that are actually going on with me, so this is a good impersonal forum for people to know what's happening.
In case you're wondering, no, I don't have cancer. I was just diagnosed with a chronic disease that looks like all of the letters you have left at the end of a scrabble game- Ankylosing Spondylitis (AS). AS is a form of inflammatory arthritis- like rheumatoid arthritis- that primarily affects the vertebrae and the sacroiliac joints. However, it is considered a systemic disease, so other joints are affected, as well as complications involving the heart, lungs, ligaments, tendons and eyes. There is no cure and it is a degenerative disease, so the longer I wait to start treating it, the more damage I do to my spine and SI joints.
People have been telling me for years that I don't have a backbone; turns out they were right... well, sort of. I have one, it's there, it's just all angry and inflamed, because my immune system has nothing better to do than to attack my joints. I am in the middle of a physiological civil war.
Now, Dr. Afrasiabi, my rheumatologist, wants to start me on methotrexate. Methotrexate, it seems, is a jack of all trades. It is used for everything from treating AS and other forms of arthritis to chemotherapy for certain kinds of cancer to early termination of ectopic pregnancies. Maybe they will come out with one that will wash my dishes and fold my clothes as it kills my immune system.
Methotrexate is not without it's serious side effects. I am to have blood tests done every six weeks to make sure that it is not shutting down my liver or affecting the production of bone marrow. I also have to have my retinas checked every six months to make sure I am not developing cataracts or other retinal complications. One of the less serious side effects is hair loss (go figure, it's a freakin' chemotherapy drug), and one of the more serious side effects is death.
If you think this is an exaggeration, the following is an excerpt from the National Institute of Health's website link to methotrexate:
"Methotrexate may cause very serious side effects. Some side effects of methotrexate may cause death. You should only use methotrexate to treat life-threatening cancer, or certain other conditions that are very severe and that cannot be treated with other medications. Talk to your doctor about the risks of taking methotrexate for your condition.
Tell your doctor if you have or have ever had excess fluid in your stomach area or in the space around your lungs and if you have or have ever had kidney disease. Also tell your doctor if you are taking aspirin or other nonsteroidal anti-inflammatory medications (NSAIDs) such as ibuprofen (Advil, Motrin) or naproxen (Aleve, Naprosyn) or are being treated with radiation therapy. These conditions and treatments may increase the risk that you will develop serious side effects of methotrexate. Your doctor will monitor you more carefully and may need to change the doses of your medications.
Methotrexate may cause liver damage. Tell your doctor if you are taking any of the following medications: acitretin (Soriatane), azathioprine (Imuran), isotretinoin (Accutane), sulfasalazine (Azulfidine), or tretinoin (Vesanoid). Tell your doctor if you drink or have ever drunk large amounts of alcohol and if you have or have ever had liver disease, Your doctor may tell you that you should not take methotrexate unless you have a life-threatening cancer. Also tell your doctor if you have diabetes. Do not drink alcohol while you are taking methotrexate. Call your doctor immediately if you experience any of the following symptoms: nausea, extreme tiredness, lack of energy, loss of appetite, pain in the upper right part of the stomach, yellowing of the skin or eyes, or flu-like symptoms.
Methotrexate may cause lung damage. Tell your doctor if you have or have ever had lung disease. Call your doctor immediately if you experience any of the following symptoms: dry cough, fever, or shortness of breath.
Methotrexate may cause kidney damage. Be sure to drink plenty of fluids during your treatment with methotrexate, especially if you exercise or are physically active. Call your doctor if you think you might be dehydrated (do not have enough fluid in your body). You may become dehydrated if you sweat excessively or if you vomit, have diarrhea, or have a fever.
Methotrexate may cause a decrease in the number of blood cells made by your bone marrow. Tell your doctor if you have or have ever had a low blood count (decrease in the number of blood cells in your body), anemia (red blood cells do not bring enough oxygen to all parts of the body), or any other problem with your blood cells. Your doctor may tell you not to take methotrexate unless you have a life-threatening cancer. Call your doctor immediately if you experience any of the following symptoms: sore throat, chills, fever, or other signs of infection; unusual bruising or bleeding; excessive tiredness; weakness; pale skin; dizziness; confusion; fast heartbeat; shortness of breath; or difficulty falling asleep or staying asleep.
Methotrexate may cause damage to your intestines. Tell your doctor if you have or have ever had stomach ulcers or ulcerative colitis (condition in which part or all of the lining of the intestine is swollen or worn away). If you develop sores in your mouth or diarrhea, stop taking methotrexate and call your doctor immediately.
Methotrexate may cause a severe rash that may be life-threatening. If you develop a rash, blisters, or a fever, call your doctor immediately..."
Who wouldn't be excited to face a lifetime of this?
(In case you were wondering, I am quagmired in the denial/shock/bargaining/depression stages of the seven stages of grieving- or five stages, if you are an Elizabeth Kubler-Ross fan. I guess I just need to find that last path to acceptance).
I truly hope that I am not coming off as bitter. Part of me is excited; excited by the prospect of waking up one morning and not being stiff and in pain. Another part of me is terrified. Terrified about everything else: the drugs not working, the side effects, THE COST, and the weird isolation I feel. Up until a month ago, I had never even heard of Ankylosing Spondylitis, so I really don't expect anyone else to know about it either. Plus, I can't help but feel like there is this iota of disbelief on most people's parts. The stereotype for severely arthritic people are old, retired Floridians. I, on the other hand, am none of those things.
I wish I was making it up, or maybe that I would just wake up and realize it was all a nightmare to get me to appreciate the health and well-being I have.
So this is the beginning.
I will try to keep this updated as much as I see fit... and maybe Michael will be correct, and this will be cathartic for me.