“Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength.”

-Unknown Author

Rheumatoid Arthritis (RA) is an autoimmune disease that results in a chronic, systemic inflammatory disorder that may affect many tissues and organs, but principally attacks flexible joints. It can be a disabling and painful condition, which can lead to substantial loss of functioning and mobility if not adequately treated.

In November 2011, I noticed swelling and difficulty in moving my right hand. After a few days it went away. Then it returned, except this time it was in my left hand. Again, it went away. I tolerated this for a few weeks and finally went to see my Primary Care Physician. I explained the problem to my doctor and she said they were going to run some blood work but from what she was hearing it was either going to be Lupus or Rheumatoid Arthritis. The results would be in next week. That was a very long week. The test results came back as positive for Rheumatoid Arthritis. An RA factor of 14 in the blood was normal and mine was reading 89. Next step is a specialist so I got my referral and off we go.

I met my first Rheumatologist in Memphis and he was older than dirt. I was not happy but with my insurance you can't really be choosy. He started me on my first medications which eventually did not help at all because the dosages were too low for a flare up and I was in the middle of a doozy. My next visit involved a ride form a friend and a cane. It was 3 weeks later and I couldn't drive and could barely walk. I made the decision to make some changes.

If RA was going to affect my life so adversely then I wanted to be sure that my youngest daughter would be taken care of just in case. We moved to North Carolina so she could develop a relationship with her father's family. It was the best decision I made but for another reason entirely. There I met a new friend who knew all about RA through her mother. My friend's life had changed when she turned 6, when her mother was diagnosed. She became an inspiration to both me and my daughter. RA doesn't affect just the person diagnosed. It affects everyone close to them also. My 11 year old daughter as struggling with the effects of RA just as much as I was. She went from having a mother with a full time job to a mother that could no longer tie her own shoes. She essentially became part of my caretaker group. She had to begin learning to cook because I could not stand at the stove long enough to cook a full meal. She also had to learn to wash dishes for the same reason. It caused a lot of tears but also laughter. For both of us. During this time, some of my joints started locking up and there I was, being dressed by my daughter. She would have to hold my arms up one at a time to get my arms in the sleeves just like a toddler. She had to brush my hair for me because I couldn't lift my arms up to brush my hair. There were some days where she would have to life my legs up into the truck so I could drive us to the store. Other days were so bad that leaving the house was not an option. Then we met someone else. My new Rheumatologist.

The first time I met my new doctor I was ecstatic! We had been looking forward to this day for weeks!! I drove the 45 minutes to get there and he did all the poking and prodding necessary to see where my worst flare ups were located(everywhere)and he looked at all of my medications that I was currently taking from the old doctor. The first thing he did was to increase all of those medications. It takes time for those medications to build up in my system so I made my next appointment for 3 weeks later. Those three weeks were so depressing for me and my daughter. These were not the miracle drugs we had been hoping for. It was time to file for disability. I couldn't walk much less work.

Three weeks later we go back to the doctor and explain the difficulties we have been having. There had not been much improvement. He increased my medications again and made another 3 weeks away appointment. Those three weeks were some of the hardest yet. I essentially had to quit driving because I could not lift my foot from the gas to the brake. My daughter had to start helping me in and out of the shower because I could not bend my knees on my own. I basically cooked from the table and she followed my instructions. She was responsible for most of the cleaning. She also had to get me in and out of the bed. I would sit on the side of the bed and kind of lay down and she would lift my legs in and then cover me up. I couldn't pick up my own blankets to cover myself up. My 11 year old daughter was tucking me in at night. In the mornings it was the same, just in reverse. It took, on average, 5 minutes for me to walk from my bedroom to the living room just down the hall and there I would stay all day long. I would get up long enough to go to the bathroom and then hobble back to the living room. She stayed strong throughout the entire time and became my inspiration. My next appointment was getting closer and I had been in this same flare up for about 3 months.

My next doctor visit came to pass and we increased my medications again and added a few more. Again, come back in three weeks. That visit also included some blood work. One of my medications could cause kidney failure so we have to check my kidney functions regularly. The next three weeks showed some improvement but not much. I was beginning to lose muscle mass because I couldn't get around very much. When I tried to use my hands they would shake very bad and I developed a form of palsy. Take it from me, chasing your hot coffee cup is no fun. I was walking better though and that was something. I developed a shuffle that I refer to as my "80 year old man shuffle." While walking, the words, "Everyday I'm shuffling" would play over and over in my head. I had to develop a sense of humor about the whole thing.

It was time for my next doctor visit and we started an entirely new medication called Enbrel. They had to teach me how to use this one because it involved an injection with a sure click pen. Before he would start me on it we had to do a liver function test because it can cause liver failure. I passed the test and received my first injection 3 days later. This is also a drug that takes time to enter into your system. It has to build up. My doctor was very quick to advise me that it would not start working overnight.

In all of this, I had filed for disability and was also going to see their doctors. The physical exam for them really hit me on how much mobility I had lost. I couldn't even stand on my toes or rock back onto my heels. Those little balls they have you squeeze, I didn't make a dent in them. I had no grip left. They denied my appeal. I had to wait for a hearing.

Methotrexate, Prednisone, Lasix, Alendronate, Tylenol and Enbrel became words we used on a daily basis. I was taking 25 mg of Prednisone daily, 25 mg of Methotrexate a week, 50 mg of Enbrel a week, Tylenol way too often, Alendronate once a week because I was showing signs of thinning bones and lasix because the Prednisone cause me to retain water. And I was still shuffling instead of walking. Through it all my little girl had turned 12 and was back in school after her summer break. She was making excellent grades, taking care of me and still having "normal" girl times. My sister had come to visit from TN a few times and when she was there my little girl would get a break and become just a kid with no worries. I was getting some mobility back and was able to drive again. We drove to Charleston, SC with a couple of friends. While we were there, I received a phone call from my attorney and I officially became disabled according to the government. I just started crying. This was in March 2013. We had been fighting so long by then that it had become habit. They were taking my disabled date back to October 2012 and that was enough. My RA was stabilizing to a certain extent and my daughter and I were ready to move back home to TN. My lack of mobility and Prednisone had caused a terrible weight gain and my daughter needed help. We both missed her sister and my mother. We needed to be around family. The only family we had been around in a year was my sister/friend who would come to NC when she was financially able.

The back pay that we received from Social Security paid for our move home. My sister did the house hunting for me. I have a new room mate that used to be an old room mate. I'm in the middle of another flare up and in the two weeks we have been back in TN my room mate has had to take me to the ER once and follow the ambulance another time. The first trip had to deal with pain in my lower extremities and hands. It was an 8 hour over night visit. The doctor was excellent. He looked at my hands and noticed an infection that I had been fighting for months. (While I have an infection, I can't take my RA medications and I fly into another flare up.) The second visit to the ER was a little more complicated. 

I woke up that morning with some massive pressure in my chest, shortness of breath and felt so dizzy and light headed I thought I was going pass out, vomit or both. My room mate was on the other end of the house and I tried to get to her door but couldn't make it. My genius self called her from my cell phone in the kitchen. She comes into the kitchen and we have a really brief conversation that consists of "What do you need?" My response was equally short. "911." The response time was excellent even though it felt like forever. In our kitchen, they start a breathing treatment and IV, check my vitals twice and away we go. My BP was 165/90 was is very high for me as my BP is normally 130's/60's. My pulse rate kept jumping into the range of 120 and a couple of times my oxygen dropped into the 90 range. We are headed into the area of 385 and here we go again...just massive sharp pains and my numbers start flipping around like it's nobody's business. The EMT tells the driver "upgrade" and we start flying with lights and sound. So now there is some panic on top of pain because I am completely alert. That's when I get my second dose of nitro under the tongue. I get to Methodist North and we begin with more wonky (yes, that is a medical term) vitals, another IV stick and and blood work. I look up and there's my sister friend. I know I look like shit because her face tells me so. My friend/room mate had called her as I was leaving for my ambulance ride. I'm already crying because I'm scared and hurting like hell and I start crying more because now I'm not all by myself. My room mate comes in not long after my sister because I asked the hospital staff if my "aunt" and "sister" can both be in there. Yes, I am admitting that I lied to hospital staff so I can have two of my favorite people holding my hand. Next up, X-rays and C-Scan and pain meds(percoset.) My diagnosis...The pain is from where my RA decided this was a good time to attack my sternum. The shortness of breathe was due to the inability to cough because of the pain it generated. The dizziness and light headedness was due to the shortness of breath. Treatment....Albuterol and Tylenol w/Codeine and take it easy and see your regular doctor as soon as possible. 

So now, I am just waiting on an appointment. 

There will be more then. Love the life you live and Live the life you love....