I set up this blog several months ago with grandiose intentions of logging on once a day and imparting to the world my innermost thoughts and feelings concerning living with Rheumatoid Arthritis. And then the flare came. As many of you know, that means that much goes by the wayside when we are down with a flare. But alas, I am back and ready to begin my blog. I hope that I can be more vigilant in keeping it up on a regular basis. Like I said in before, this is basically for me, but if it helps anyone by giving information or even comic relief, than I will be happy.
Okay so first and foremost some background information. I was diagnosed about three and a half years ago with Rheumatoid Arthritis. I was 29 and going to college at Gonzaga University to finally finish my degree that I had been putting off most of my early adulthood. I literally woke up on bright and shinny fall morning and could barely move. I thought I had the flu...boy was I wrong! After several dead-end tests and lots of antibiotics, pain medications, and anti-inflammatories, they finally gave me the final diagnosis of RA. AHH! OMG…to say the least. More like WTF? My grandpa had RA and from what I remember of him, he was mean and always grouchy. YEAH! Is that what I had to look forward to?
I had to eventually quit school, even though I got accommodations from the disability office on campus. It didn’t work. I could barely get out of bed, let alone attend class. Gonzaga is not exactly all that understanding when it comes to students missing class or needing special needs or exceptions. I ran into problems with almost all of my professors. I didn’t understand what the true consequences of this disease were let alone my family. How could I possibly expect my teachers and mentors to understand? It is an invisible disease for the most part. Many times you don’t necessarily “look” sick, but Lordy, are you ever.
That’s the problem with RA. Many people don’t get it. It took me a long time to get used to the limitations and implications that this disease has imposed. When I first got sick, I was talking to my roommate’s mother on the phone and she gave me one of the most important pieces of advice. She told me to be prepared to lose friends. What?? Are you kidding me?? I just lost my educational dreams, was just about to lose my job because I was no longer reliable to show up, and now she was telling me that I would lose the people in my life that I cared about and who I thought cared about me?? It was all too much. I didn’t believe her.
I was so naïve.
The loss of friends was actually not exactly accurate; my friends have been warriors and amazing caretakers in this ordeal…they really stepped up to the plate. No, in my case, I lost two of my siblings. My two older sisters, who have families of their own, let the green dragon of jealously get the better of them. The problem was my parents. My mother and father became especially attentive, caring and honestly a little overprotective of me. It must be excruciating for any parent to see their child, no matter the age, in so much pain that all she can do is buckle over and breathe with tears streaming down her face. Basically my diagnosis of RA not only changed my life, but it changed theirs too. They wanted to fix it. IT is something that cannot be fixed, but it didn’t stop my parents from trying.
They were awesome…scratch that…they ARE awesome. They took me to doctor’s appointments, helped me financially, they even let me move back in with them when I had to quit my job and could no longer afford my apartment. My dad asks me every morning how I am feeling and knows when I grunt that he needs to keep the daily teasing to a minimum; at least for the time being until my medication kicks in. My mother is always there to offer a back or neck rub, although many times I am too tender for her to even touch me, let alone massage me. But basically, my parents have made this a huge changing part of their lives like it is for me. They have been truly amazing and I will never be able to repay them for everything they have done for me.
That was the problem with my sisters I guess; they felt like mom and dad were spending too much of their energy and attention on me and my disease. They tried to convince my parents at one point that I was simply “faking” my symptoms and wasn’t “as sick as I was putting on.” Are you kidding me?? Why would anyone in their early thirties willingly quit school, quit their job, move out of their apartment into their parent’s guestroom, pack and store all their belongings in a storage facility, and be forced to be on welfare for medical and support? They had lost their marbles; I was convinced of it.
I mean, COME ON….are you kidding me?
But that’s the problem with this invisible disease. Many times I have no visible symptoms. There are times when I have swollen and red joints and days where I am so fatigued and stiff that I can barely roll out of bed to slowly hobble to the bathroom, hoping that I won’t pee my pants before I get there. I then force myself to eat breakfast immediately after going to the bathroom so that I can take my 17 pills that I am required to take every morning.
But then there are other days that I wake up and my stiffness and morning pain is a minimum which allows me to get moving quicker and the day begins and ends on a good note. Some days I can actually get out of the house and do things like go shopping at Target to get more Tylenol Arthritis and swing by the Walgreen’s Pharmacy on the way home…Yippee….what an exciting life. Something one should DEFINITELY be jealous of, right? Yah, right. (Please note the thick sarcasm.)
Basically, this riff if that is what you want to call it, has ruined my relationship with my sisters, severely strained the relationships between my parents and my sisters, and overall made me realize that our perfect little family is not so perfect after all. It has been difficult and emotionally draining, but I am getting through. Basically, I had to remind myself that these are the choices they are making and I have NO control or power over what other people do or think about you. I just brush it off.
It took several months for me to grieve over the loss of my relationships with my sisters, but I am healing. It has taught me that even though you are related to someone, it doesn’t mean unconditional love. I learned that people can disappoint you, especially if you put them to a standard that they are unable to achieve. But most of all I learned to appreciate and love even more those around me who are there for me, who love me and truly care about me. And I have to say, that the majority of them do not share the same blood as me. Family is not about blood lines. Family is something to be cherished and regarded with respect and honor. It is hard to find and even harder to hold on to. But well worth the blood, sweat, and tears!
I hope this wasn’t too dark or depressing. That is not how it was meant. I just wanted to relay to those out there struggling with any disease in their lives, RA or not, that it changes people. It changes the relationships that we had before the disease, and sometimes it strengthens those relationships that are there for the long run. Being struck with a chronic disease does not necessarily mean all bad. Sometimes you find a bright light at the end of the long journey…and it is worth it! Take it from me! :)
Wishing you all good health and happiness!
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