February 1, 2012
"Am I lucky today?" - - those are the first words in my head when I open my eyes in the morning... Will I be able to get out of bed? Can I feel my legs? Can I move my arms? Will I be hunched over the sink to brush my teeth? Do I have to hold on to the tub as I pee? Can I put my socks on today without holding my breath because of the pain? How bad will it be today?
Yesterday was bad... really bad... although the weather was beautiful and in the 50s, partly sunny... my body wasn't as happy as my eyes were with the gorgeous weather. yesterday could have been added to the "Top 5 Worst Body Days" - - i knew it was going to be a struggle already when Dee kissed me goodbye and I tried to move to reach him and I couldn't. Nonetheless, I knew I had to get up... I had to go to work. I had to do and I could do this. I had the strangest dream though the night before... I kept dreaming of the number "44." Was this the age? The age of my end? I had this thought yesterday that I was going to have a short life. I don't know why, but I just kept thinking it.
So i made it to work... barely being able to sit in my chair. My boss's and coworker's face were the same: sad...just looking at me struggle. I'm tired of people looking at me like that. It really messes with my head. There I sit at my desk, checking my inbox, doing my morning work, and then back to researching my condition inbetween like I always do. I had physical therapy during lunch time and as soon as I got up from my chair to walk to her in the waiting room, she immediately stops me and says, "You're limping. Why are you limping? What's going on today?" I can tell that even she is frustrated and confused as my aches and pains jump every two days from this joint to that joint. It was the same as usual... simple exercises to help my mobility. I chose not to take Advil that morning so my therapist and my rheumatologist could really see how i move around or try to, at least. As we moved from exercise to exercise, I started tearing up because I could not simply perform raising my leg up straight as I sat down on the chair. It was painful and i was struggling. I hated every second of it as my mind fought with my body. It was the same as always when I got back to work, trying to find the closest parking space so I wouldn't have to walk far and the same thing going through my head, "walk normal, don't let people see you struggling, don't you dare walk like there's something wrong with you," followed by a sigh of relief because I finally made it to the finish line.
I was eager to finally get to meet my rheumatologist that afternoon so I could finally get some answers and options as to how I can have a better quality of life. When I got to the doctor's office, the whole waiting room was filled with seniors in wheelchairs. I could barely get to the receptionist and again, the thoughts in my head of, "Is this going to be me? Is this what it comes down to?" I sat in the waiting room, filled out the paperwork, and looked around the room at the patients, thinking, "Does she has psoriatic arthritis? I wonder when she was diagnosed" or "She looks normal, chit-chatting on her cell phone, maybe today is a good day for her." Then all of a sudden, I noticed a mother holding her teenage daughter asking someone to help her grab a wheelchair. Her daughter did not seem to look like it was arthritis, it looked like something more because of the tremors and shaking. As soon as someone helped her into a wheelchair, her daughter was fine and relaxed and they sat there facing each other, having the usual mother-daughter gossip. I started tearing up, again, feeling alone, feeling sad, feeling like this battle was getting too much for me to handle. I was wondering, "Why? How did this happen?" The doctor seemed so backed up that I had so much time to run the questions, yet again, in my head. I started tracing all my symptoms back to when I got diagnosed, how I got diagnosed, what led me to that diagnosis. I think about, "What if I never wanted to get married? What if I waited? What if I just went through with it... marrying someone I didn't truly love... would I have gotten diagnosed? Would this have happened if I wasn't so stressed out with the planning? I know that I probably could have always had this condition, but would I have gotten some extra years or another healthy, pain-free decade if I didn't plan that wedding? God has a plan," I kept telling myself... "God has a plan..."
I was the last patient called in to see the doctor. She was young, energetic, really eager to ask me questions and find out more about my psoriatic arthritis. But I, on the other hand, was just exhausted. It's the same story every time I meet a new doctor... "I was diagnosed in June 2010, then I got on Humira, then I got off Humira in July 2011, then it started up again in November 2011, etc. etc." She spent a lot of time talking to me again about herbal supplements, changing my diet, trying to go vegan.... She even brought up the neti-pot to help with my sinuses, which will help with circulation, which will help with this body part, then will help with inflammation... It went on and on. I looked at her, thinking, "I can barely put my socks on and you're talking to me about a damn neti-pot?" I knew she meant well and I appreciated all the new advice she gave me about trying out this "elimination diet" which completely wipes out the gluten, dairy, eggs, soy, citrus, and corn. It sounded like a challenge, but nonetheless, it was interesting. Then she suggested mixing certain herbs with localized, unprocessed honey and taking a spoonful in the morning. All of this stuff, again, sounded interesting, but I needed the facts.
She was aware that I was trying to take on this hollistic approach and how I started doing physical therapy and acupuncture, so maybe that's why she was throwing all this holy, herbal, guru medicine crap in my face, but everything she mentioned seemed like another "trial reliever" - - "Try taking out eggs for two weeks, start the herbs, inflammation seems to go down, according to some of my patients, then try taking out dairy, then meats, see how you'll feel in a couple of weeks or months..." At that time, sitting in the patient room, I was thinking, "Weeks? Months? Seriously? I want to live TODAY."
Eventually, I had to cut her off and said, "I'm sorry, I don't mean to jump the gun or cut you off, but other than changing my diet and taking these additional herbal supplements, what can I do for comfort right now? Is there something else other than shots that I can take? What are my options?" At that instance, she THEN finally asked to see my range of motion, how far I could bend down, the severity of my psoriasis on certain parts of my body... Now, she was getting it.
She said, first off, for comfort, she could prescribe me an anti-inflammatory that was like Advil, but not as bad because she's worried about the damage it could do to my stomach. So, she prescribed "Mobic" instead of Advil. Then, I talked to her about my joints... "What about my joints?" The only picture I had in my head was the hands of a woman with arthritis and she didn't do anything about it... her fingers were all distorted and disfigured and curled. I need my hands to type, I need my hands for work, without work, I have no insurance, without insurance, I have no medical help. She then talked to me about getting on Sulfasalazine, an oral medication, other than Humira, that would help treat pain and swelling in arthritis, but she cautioned me about having children, since she knew that I really wanted to have a family in the next couple of years. She said that for men, it messes with their sperm, and for women, it messes with their eggs, so getting pregnant would not be impossible, but would be difficult. So, this oral medication will help with my joints, but what about my skin? She then said that I could possibly take Prednisone to help with my skin. But I remember Prednisone and I hated it. She also mentioned that Sulfasalazine would take about 4-6 weeks to kick in, but it could take up to 6 months to really show improvement. Again, this was another trial and error that I would have to endure.
I talked to her about my worries on further joint damage. I told her I had been doing research on Enbrel and Humira and studies showing that these kinds of shots would prevent further joint damage (again, that horrific picture of the arthritic hands danced in my head). She agreed with me and said, "yes, that's true and it will also give you the instant relief that you are seeking." (Studies have shown that Humira is favored over Enbrel, by the way.) But then she mentioned again about getting pregnant and Humira... and so I asked her if she has had patients who have taken Humira and gotten pregnant and the outcome of their children. She pulled up a study on her computer screen regarding 130 births of women who were on Humira and although the study was a small number of 130, there were no harmful effects. Because of her studies and hollistic approach to help her patients, she was again, hesitant to just throw me out there and insist that Humira was the answer. She shared her concerns with me that although Humira has been out for a while and has shown good results, the studies on Humira have only been for a 10 year period, not 20, or 30, or 40, so because I'm so young, she is just a bit more concerned with what can possibly happen down the line. I completely sympathized and understood where she was coming from with this. I then asked her if she, personally, knew anyone that was on Humira and got pregnant and she said that some of her colleagues have been on Humira, then got pregnant, so got off Humira, had the baby, then got back on, and they were fine. I asked, "what about the baby?" And she said, "they're fine, but again, this is just a small number of women that I know." She said I could always get back on Humira and if and when I decide to have a baby, I can get off of Humira and possibly take a low dose of Prednisone to help with inflammation or even take Advil up to my third trimester, but we didn't have to make a plan until we cross that bridge. She pretty much said that she would leave it up to me to think about for the next couple of days.
So, I sat in my car thinking about my options between the oral medication or the shots. If I take the oral medication (Sulfasalazine), I'm going to have to wait to even see if it works and if it helps my joints, but not my skin, then I will have to add the steroids. I will also have a hard time getting pregnant when I'm ready. If I take the Humira shots, I already know it worked for me, and there are people out there who have had babies, but with the 10 year studies, what if down the line, some other side effect comes up?
As I drove off, I thought about Dee and his future, his dreams to have a family, to be a father. I was compromising what he's always wanted because of my health. Will he leave? Will he stay out of pity? Will he have to forget about those dreams because of me? I was scared and in tears as I drove home. I wasn't sure if I wanted to pour all of this on him at once or if I should just wait. As soon as I got home and saw him and he hugged me and asked how everything went, I just cried and cried. I couldn't help it. So, we sat down and I told him everything. I told him my options and I told him that I wanted to be completely honest with him because it was only fair because it was his future, too. I told him that he was free to go, we weren't married, or even engaged, and he still had a shot at being with someone completely healthy so he could have healthy babies and a big family, because with me, it's just so unpredictable... who knows what could happen later down the road. I told him that I didn't want him to resent me, in case, something did happen with future pregnancies. He just hugged and kissed me and told me that he has already decided that I am his future and he doesn't want to be with anybody else but me and that we would go through this together, 100% and if i couldn't bear kids, then we'd get a surrogate. He told me it was all just crazy talk what I was saying because he wasn't going anywhere. But I couldn't help to think, like I always do when we talk about our future, I finally found the man that I want to marry, but I am so scared for the wedding planning. I don't want to have another outbreak again. What if I get sick all over again? I can't help to think about marrying him, but at the same time, I am terrified of what it could possibly do to my health if I get stressed, anxious, or worried.
I talked to my mama about the doctor's appointment too, and she also supports whatever I choose to do. But both Dee and my mom have agreed if Humira is what's going to help keep me from suffering, then to just do it. I know my Papa has been telling me to get on Humira for the longest time now, so even though he's been supportive of all of these other approaches, he has always believed in Humira. I actually felt a sense of relief before I went to bed last night because I felt like I was getting closer to my decision to just get back on Humira. I started thinking about all the activities I've missed and all the stuff I want to do when I get better. Nonetheless, I think about having a family all the time and experiencing pregnancy without pain, but also having a healthy baby. I know that God has a plan and I hope I'll have the serenity to accept whatever it is.
Feeling "luckier" today...
