Thursday, February 26, 2009

Like a Guinea Pig

Ever feel like you are part of an experiment? I guess it takes a certain type of situation, but for the past year and a half I have felt like a doctor's guinea pig. And really not just one doctor, but many. Western medicine is so broken up with specialists in different fields and then I have my primary doctor who has been trying different things also. I have taken a bit of a break from writing because I was trying corticosteroids for a while and I wanted to take full advantage of the fact that I could walk and not hurt. So I exercised a lot. Well, a lot for me. But then the depression started setting in and it hadn't been that bad in many months. Then my boyfriend and I started having problems. Long story short- it's been a roller coaster of a ride over the past 3 weeks!

The good news is that an old high school friend hooked me up with a clinic that does acupuncture on a sliding scale and I've been wanting to try that for a long time. I've just never had the money. But every time a different doctor wants to put me on a different pharmaceutical, I cringe. I can't even begin to count the number of different prescription drugs I've tried over the past 18 months; a friend of mine recently said that I've been single-handedly keeping the drug companies in business! Luckily, through the hospital I go through, their pharmacy heavily discounts all of my prescriptions. Otherwise, I would have been out on the street a long time ago.

So I've had two visits to the acupuncturist and I'm very hopeful- pretty much because all my docs have tried everything they say they can. The only problem is that my acupuncturist wants me to cut out dairy and sugar. Hello??? Ice cream, is my favorite food group! So I guess I have to start cooking. Which I LOATHE. And I can't even tell you why- I've tried for years to like it and figure out why I hate it so much, but I just can't figure it out. Anyway, I'm sure it will be good for me. And I'm willing to try anything right now that doesn't have to do with a pill!

I feel really uncreative right now- like I'm blocked. I can't even pick up my sketchbook because I'm making all those excuses that I always do: I don't know what to draw/write about; I don't want to get out a bunch of supplies because I don't want to clean it up; I don't have the energy; what if someone makes fun of it; what if it's ugly? Excuse after excuse after excuse. I do it all the time. I wish there was a pill for that! But that would just be a quick fix. And I'm all about trying to get at the root of the problem. Today I overdid it; I walked a couple blocks to my hair appointment, went to an art store and stood for 20 minutes without my cane (oh my legs!), and then went to Wal-M@#$ (shit like cat food and litter is SO much cheaper there, I just can't help it!). And now, my whole body hurts and I'm extremely tired.


Wednesday, February 4, 2009

Utterly Hopeful and Alone

Yes, you read that correctly. You see, in the very recent past, that would have read hopeLESS, but my rheumatologist finally prescribed me some prednisone. For those of you not familiar with autoimmune diseases and the crap I've been dealing with for the past 2 years, this is the medication-sometimes the only medication- that seems to help people in my predicament. I've been told that my labs and bloodwork don't show significant inflammation, so the docs have been weary to try me on prednisone, which I understand. However, I've been going through TWO YEARS of drugs that haven't even come close to touching the pain.

On Monday, before I filled the prescription, I started crying; it was a mix of things, really. My eyes seemed extra sensitive that day and were watering like crazy to begin with. I was in a lot of pain and in one of those moods where I was so SICK of hurting! Just SICK of it! And then, there was the task of getting the script filled. Whenever I have to go to the pharmacy, it is an ordeal. It's at the hospital, I have to park in the parking garage, I have to use my cane because the walk is pretty far. And then I have to stand in line for what seems like forever. But they severely discount my meds, so it's worth it. But I was also thinking about the fact that this prednisone is the last resort for doctors.

If nothing else has worked, and the docs have been telling me all along that this won't work, why would it? Then what? Is it hopeless now? These questions started bombarding me early Monday afternoon while my boyfriend was getting ready for work and I had to go in the other room (the only other room in our apartment) and cry. I had to just let it out. What was I facing? I couldn't face another med not working. I couldn't face telling my boyfriend that this, too, isn't touching the pain, and I can't go for a hike or a bike ride with him once the weather gets nice. I couldn't face telling my son that the doctors tried another medication for mommy but it isn't working, so I won't be moving back anytime soon.

With tears streaming down my face, my boyfriend in the other room, I had never-ever- felt so alone. My boyfriend has been over this whole ordeal for some time now and I'm not sure why he's hung on this long. I don't feel like him, my family, my friends, or any of the people I've met in support groups understand what I've been going through and what I've had to give up. At this point, I just didn't feel like I could talk to anyone about my concerns and have them fully understand what my emotions were all about, and that's what I craved- more than anything. Someone who truly understands.

But...I also had some hope about the possible good effects, but wanted to reserve that for how I actually felt after I took the drug. And the doctor warned me that he wouldn't keep me on the medicine for more than 2 weeks. If it seemed to help my joint pain- really help my joint pain- then he would try methotrexate, a drug similar to the corticosteroids, but with fewer bad long term side effects.

It's been almost 48 hours with the prednisone now and I don't want to jinx anything so I'm not going to write anything much about it. I am also trying (with doc's orders) to distinguish the type of relief it is giving me so that we can go from there. Hopeful=Normal Life Again. Fingers crossed.

Thursday, January 29, 2009

Lessons From My Shower

After pulling my shower curtain aside today, I realized that there was quite a consequence to the big "bubble" I was feeling on the floor of the bath tub. There was an inch of water on my bathroom floor and it had soaked most of the rag rug that is my shower mat. I called for my boyfriend- partly to help me out of the tub and over the water safely, and partly to just look at him and hope he would see the desperate word of "help" in my eyes. But we all know that men aren't that easy.

I dried off and finished my after-shower routine in the small 1'x2' space that didn't have water on it and got dressed. I called the super and told him about the problem; he said he would come by first thing in the morning. I pulled up the bath mat, hung it over the tub, and threw a couple of towels over the mess of water and got everything off the floor. I just didn't want to deal with another flood. Yes, I said another flood.

You see, Floods and me, we got a thing goin' on. I don't know what it is, and I'm trying really hard to "learn the lesson" here, but it seems like Flood follows me from apartment to apartment. It seems as though I am always dealing with some sort of fallout from, I don't know- either crappy plumbing, or some kinda' crazy water karma!

The first time I lived on my own- like really lived on my own- was after Quent's dad and I got a divorce. I rented a tiny 450 sq. ft. w bedroom house. Our washer and dryer was in our kitchen(in fact, it took up half of our kitchen space!), and the hose from the washer had to drain into the kitchen sink. Well, one night, Q had a bad dream and wet the bed. I woke up to his crying at 3 in the morning, got him undressed, and led him shivering (poor little guy!) into a warm bath. I threw his pj's and bedclothes into the washer while I tried to wash him off "good enough" in a running, middle-of-the-night bath sort of way. He was still crying (he may have still been dreaming) when all of a sudden I heard a gush separate from the running water of the bath tub. He was old enough to be left for a minute (he was 5 at the time) for me to run 3 feet to the kitchen to see that the hose had been dislodged from the sink and was now simply draining onto the floor.

Two weeks later, right before I dropped Q off at kindergarten and rushed myself to get to class on time, I had thrown some laundry together and put it in the washer. We came home at 5:00 that evening to water streaming out of our front door. It had flooded the entire house except for Quentin's room (the house was old and on a slant). That summer we went without carpeting for quite a while and threw out a bunch of ruined furniture.

I won't bore you with the tragedies of our 3 bed 2 bath apartment we had after that which constantly had toilet issues, or the ongoing plumbing issues of this apartment (because frankly, we aren't exactly "up to date" on our rent payments here!), but I have managed to come up with some sort of "lesson" out of all of this:

Things are constantly overflowing in my places of residences, and it seems to happen more so when I am creatively dormant. I make up excuses for not working on a painting, or not recording a dream, or not sketching out a simple drawing in my sketchbook that is right next to my bed! I think my apartments are trying to tell me that if I don't spill it, they will!

Okay, Okay! I surrender! I here on out promise to try harder to act on my creative impulses rather than stifle them. I will paint when I feel the urge! I will write whenever and wherever I want! I will take a walk when I am up to it no matter how cold it is! Laying dormant is probably the worst thing I can do, so I thank you oh Flood. I succumb to your power.

Tuesday, January 27, 2009

Soul Memories

I suppose Yoga and knitting will have to suffice for my creative fill today. I have been laying in bed for the past week due to a nasty cold on top of all the other stuff going on in my body. I forgot how good it feels to stretch- it really feels as though there are cells or something opening up in parts of my body that have lain dormant for so long. Before I got sick (when I say "sick" I am using that word for lack of a better one to describe the constant pain in my joints that only gets worse when I move my body), I practiced Yoga quite a bit. Not religiously by any means, although at times I did want to just pour my heart and soul into it, I just had so much going on with school and work and Quent and everything.

But now, I just adapt and improvise- it's really quite freeing. I can do some of the Yoga poses that don't put stress on the joints, but I also like to make up some and just stretch the Emily way! I opened my blinds just as it was getting dark. And we are finally getting our first pretty now here in St. Louis. As I was in one of my "made up" poses on my back, with my knees bent a little and my legs wide open, I looked backwards just a bit and saw it. Tiny little snowflakes that would have come and sat right on my tongue if the wall hadn't been there. I just stayed in that gentle position and watched for a while, remembering being a child and running around throwing snowballs at my sisters- and building snow tunnels and snow forts and laughing and running. I actually heard a few people in the parking lot outside laughing and I could just tell- they were definitely playing in the snow.

I know that my body isn't able to do those things now, but the fact that I still have my memories- my soul memories- leaves me feeling content. I watched for a few more minutes, and then decided to meditate on all of the good things I have in my life. And I know that my son is carrying on the tradition of just bein' a kid, playing in the snow and enjoying it with all of his being.

Achy Frustration

Okay, so I've already spent an hour (maybe a bit more) at the computer this morning and I am starting to ache terribly. But this will not deter me! I have felt like this several times before. I just need a rest and some time for my mind to clear out a little before I can post anything of any significance. This is just part of the frustration of being sick: I want desperately to spend hours at the computer figuring things out, because my mind moves so much faster than my fingers can type and my body can sit upright no longer. I will be back!!!

Monday, January 26, 2009

Getting it OUT

I know that was a long one to begin with, I just wanted to get my story out there so that my blog can make some sort of sense. Or that I can make some sort of sense out of my life at this time. I feel that this will sort of take on a healing role for me which I desperately need. I guess at this point, I don't care who reads this- I am in so much pain and I need to get it out.

On Becoming Sick...

After fighting for control of so much in my life, I never thought I would lose this much of it. It has humbled me and taught me a lot; I am still learning.

I am writing this for several reasons- to get out my anger, frustration, and pain- to update those who haven't seen me in a while and have some questions- and to help my loved ones understand some of the decisions I've made.

I suppose it all started when I thought I had finally "had it all". After 9 years of working several jobs, raising my son, and going to school when I had the time, I had reached my goal of getting my Bachelor's Degree. I taught Middle School Art for a year before realizing that all the bureaucracy of a school setting just wasn't for me.

At the end of that school year, I resigned, got a cushy job as a mural artist and faux finish painter. The love of my life returned from the Middle East and we started dating. My ex-husband and I (with the help of his now-wife, Hannah) were finally coming to terms with the fact that joint custody was the best thing for our son all along. I felt great. I can't remember feeling better in my life!

That fall, my hips and knees started hurting, but I didn't think much of it- I was climbing up and down huge scaffolding all day long, on most days, and loving every minute of it. By Spring, the painting gigs were slowing down, so I reluctantly picked up a second job waitressing 3-4 nights a week (I told myself that once I got my degree I would never have to roll silverware again!) when Quent was at his dad's. Ben and I had also quit smoking and were working out on a regular basis.

Soon, my elbows would get sore during workouts and I started wearing knee braces on both knees to the restaurant at night because they had gotten so bad. By late Spring, the pain had spread to my wrists, fingers, and toes. Finally, one night in May, I had to leave work because I couldn't hold my waitress book open. I went home crying, Ben drew me a bath, and convinced me to finally see a doctor.

I had somehow managed to keep health insurance throughout my adult life- that is, until I got my Dream Job as a Painter. I would have to use my own money. Throughout that summer, I had to quit both of my jobs due to the pain in all of my joints. I drained my small savings account to see a few different doctors. I ended up selling most of my belongings in a garage sale and moving from a two-bedroom townhouse to a studio apartment. The doctors did some tests, but could not come up with a diagnosis. so they started trying me on different medicines. This was the beginning of a long, ,long road of "trial medicines".

By the end of summer, they had me on some stuff that made me tired and mentally unstable- or maybe it was the illness- and I had to, for the first time in my life, admit to myself that I didn't feel capable of raising my own child. You cannot know this heartache unless you have one of your own, but it is something I will never wish on my worst enemy. After years of custody battles with my ex-husband, I knew I had to face him and ask him for help. I had to tell him that I couldn't do it anymore- that I felt in my soul, that it was NOT in Quentin's best interest to be with me at this point.

I chose to speak with his wife first because she is a great mediator and a kind soul. And I know that Quentin loves her and that she loves him and I couldn't be more grateful to have a step-mom like her in his life. We met at a coffee shop and talked about options and discussed logistics and she was very understanding and patient with me- I know that I must have been a mess. I left crying but knowing that Quentin was going to be in good hands. I cried the whole way home because I could not be those good hands. And that killed me.

In fact, I believe I spent most of that late summer and early fall crying due to all sorts of things- the pain, the meds, the "not being a mom" feeling. The truth was starting to hit me though; it was only getting worse. I had run out of money and the little bit my family could help out with was gone. The last med change left me crying for 6 days straight. I'm not kidding- if I was awake, I was crying- snot rags and all! Poor Ben didn't know what to do with me anymore, so he called one of my sisters in St. Louis, Hannah (it's a great name!). She drove to Indy and brought me back to my hometown of St. Louis where my mom and sisters presently live.

They got me set up at a hospital here that has a free clinic program and really great financial assistance. Initially I was staying at my sister's house and Ben was still in Indy. We soon realized that doctor's move as slow as politicians! Ben and Chad and Hannah and I worked things out during the Holidays and I amazingly got to spend s lot of time with Quent here in St. Louis. Unfortunately, that's probably when I was at my sickest. I have more symptoms than just the joint pain, but I won't get into them here.

Ben and I ended up getting an apartment here in St. Louis and it is close to my sisters and my mom. They help me out a lot with so much and I couldn't possibly thank them enough! During most of 2008, I battled severe depression stemming from the fact that I didn't feel like I was being a mom anymore. Chad and his wife, Hannah, have been more than flexible about getting Quent here to visit and letting me stay there to visit at times, so I see him when I can. But in the traditional sense, that you always think of when you are growing up, I was not a traditional mom.

Unfortunately, the doctors here are no closer to diagnosing me than the ones in Indy. They say that illnesses like this can take years to diagnose, so I'm not really sure what that means for my case. They have said that it is most likely not the big three that you think of- Lupus, Rheumatoid Arthritis, or Fibromyalgia. And at different times, different docs have told me that it probably is a couple of those- or maybe something else. They are really vague and that is frustrating. But all I can do is keep going to my appointments, taking my medicine, and trying different things for the pain.

Although I love St. Louis, I hope to get back to Indianapolis soon because that is where my child is, but I need to feel safe enough and strong enough to live without the support that I have needed for the past couple years. I need a diagnosis and I need to heal.

I didn't know that it would all come out like this. It is a long story and if you have made it all the way down to the end, I wish I had a prize for you reading all of this! I think I just needed to tell the story. From my side and what I've been going through so you all can understand a little bit better. For those of you that have helped along the way - even just a phone call of support- it has meant the world to me and I cherish every bit of love from you all! Thank you for hearing this.

**Update: Apparently, Ben was not the love of my life, but one of a select few I've had along the way.  We broke up in October of 2009, and quit speaking to each other in April of 2010 for reasons too deep to discuss on a blog.  I wish him well and I wish him peace.**