Rebbecca's Journal

My first journal post. Yippee.

So, I joined this site for support. I don't have anyone in my life who actually understands what I go through and I need people who do to get through this.

Ok, off topic, changing my font every time I hit enter is annoying. Moving on...

I have chronic pain. I have a lot of chronic pain. When I was 15, I was diagnosed with patella femoral syndrome, which means my patella in my knee keeps needing to have calcium deposits and rough edges shaved off to prevent it from wearing thin, having sharp edges which shoot pain through my knee/leg, and to stop the fluid that builds up. I had this Orthoscopic surgery on both knees at that time. Since, I have had knee pain but could deal with it. I *could* walk, dance, run, take stairs, etc, I just avoided too much of it.

Then, when I was about 20/21 or so, it started to gradually get worse. I was still able to do these things, it just hurt more. My hips started tingling at random times, especially when I laid down to sleep. I always sleep on my sides, as I can't breath properly or by back hurts when I sleep on my back and my boobs hurt when I sleep on my front. (TMI lol) My hands started hurting when I was about that age as well, I worked in a customer service field with computers and that flared them up. No one could explain the pain, all the Drs I saw told me there was nothing wrong with me. I started being more tired, losing my memory, trying my own methods of managing it. OTC pain meds, heat, ice, rest...nothing helped. My muscles started hurting, I was in pain all the time.

Fluid started building up really bad in my knees after a night of dancing and wouldn't go down in about January 2007. I could barely walk it was so painful. I saw a Dr. in February and he drained my knees and put me on anti-inflammatories. He also diagnosed me with Arthritis and Patella Femoral Syndrome. In May, I was scheduled for June for Orthoscopic surgery on my left knee, to be followed on my right when it healed.

I had Orthoscopic surgery, was able to walk the next day. Then the fluid kept leaking. It wouldn't stop like it was supposed to. It would come out yellowish and started hurting like hell. I saw 4 Drs about it (3 ER visits and my surgeon) and they all said it was part of the normal healing process and healing fine.

In July, I hurt with the most excruciating pain I have had in my entire life. I have been through a lot of pain in my life and I will never forget how bad this was. I was screaming and crying with pain sitting still, much less trying to put any amount of weight on it. I had to manage my way down 2 flights of stairs and a bumpy car ride to the ER. I was screaming in the ER room, to the point of a few nurses and Dr's asking me to please keep it down, I was scaring the other patients. I found out then that I had a staph infection and had had it for the last month, obtained in surgery. A month and 4 Drs and no one had found it.

I was admitted and brought into surgery for them to try to clean out my knee, went through this 3 times in a couple days, all with me knocked out. I was in the hospital for 2 weeks and 4 "cleaning" surgeries. I had IV bruises all over my arms due to having veins that "hide" and "roll". I looked like a leper due to the black and blue up and down my arms before they decided to put a PICC line in my upper inner left arm for my antibiotocs and blood tests. I lost 20 lbs during those 2 weeks, I wasn't hungry and the food all smelled like stale, cooked broccoli (even the pancakes), so when I did eat, it was cereal, but it was rare.

My muscles in my left leg atrophied and depleted, physical therapy was hell. I could barely walk, I was on crutches or my wheelchair, and doped up for 3 months. I was giving myself an hour of IV antibiotics every 12 hours and taking pain meds every 4. My friends helped me get things done as best they could (until they got tired of it and left me to my own devices). PT made it possible for my muscles to come back enough to walk and my knee to bend. My knee still gives out sometimes and hurts often, so I have to walk with a cane or ride in my wheelchair, depending on how much walking I do or how much it hurts.

My right knee still hasn't been taken care of and, due to putting so much stress on it not being able to use my left, it's gotten much worse. I still can't have surgery on it because my left knee isn't better yet. I'm supposed to go in for another surgery on my left, due to a fall I took and a tear in the Miniscus. I rely on my boyfriend a lot to do the things that I can't. I lost the ability to run, dance, jump, walk long distances, kneel or squat. I can't do any aerobic activity that I'm aware of so I can't exercise for weight loss, so I keep putting on weight. The weight doesn't help my self confidence or the pain.

I'm on antidepressants and they help some but it's hard to be living like this. Drs still can't figure out why I have pain everywhere else. I have tried Lyrica, Strattera and Cymbalta, none of which worked. Cymbalta made my mood worsen. Heat sometimes works, cold makes it all worse. I feel like a burden on my family and friends, and feel alone a lot as they don't understand and often forget. I am invited places I can't physically get to, to do things I can't do and am forgotten about when making plans. I have to cancel plans I can do often due to a lot of pain or exhaustion.

I am 26 years old and feel like I am in the body of an old woman. My heart hurts and I cry often. I hate feeling sorry for myself but I am so angry that my life is basically going to be this way for the rest of my life. The most recent knee Dr said I have stage 3 of my Arthritis, it never reverses, and stage 4 means I am physically unable to walk at all. When I am prescribed a new medication, I sigh, but the pharmacist knows my face. I take Tramadol for the pain, though the dosage keeps increasing, Prilosec for acid reflux, Lexapro for my depression, Zyrtec for my chronic urticaria (my allergy receptors are reversed, therefore always triggered), Phentermine to try to help with my weight, and Depo for birth control, though that has to change due to a recent hormonal imbalance.

I am so angry, so tired, so sad. I wish I knew what to do to make it all better.