Anxiously waiting

I am so ready to get this going. I'm doing the physical therapy but had to take the last week off because of a lack of medications...thank you insurance. I'm getting back on track Monday morning. I'm filling out my application for surgery this weekend and will be mailing that Monday morning also. I'm following the rules and doing the steps. I'm so looking forward to being smaller so I can get started with the rest of my life. I need to go. I need to be alone to see and hear and just smell everything. I've made some changes to my plan though. I'm not buying a trailer. I'm going to convert my SUV. I'm still going to save the money so that I can buy new tires and get a complete tune up before I go. At this point, the faster the better.

It's been a while...

So, it's been a while since I was here. I actually forgot that I had started this. Since my last post I've had a few surgeries. I got my left knee replaced, had surgery on my right knee and surgery on my left shoulder. It's been a couple of years since my last surgery but I'm again doing physical therapy. I've started seeing a new primary doctor and we are making some changes in my life. Here goes the latest update...

First, my RA is FINALLY in remission. For those that don't know, that means that my RA factor is down to 22 and there are little to no noticable differences in my x-rays. My medications are definitely working.

Next, I spoke at length with my primary doctor about my future. When I was diagnosed with RA, I weighed 170 to 180 active pounds. I walked, danced, hiked and other things. Since my diagnosis in 2011, I've lost a huge amount of mobility and gained a massive amount of weight. After speaking with my doctor I've decided to have gastric sleeve surgery. To begin that process I've begun seeing a nutritionist and more physical therapy. The nutritionist is to get advice on eating right and the physical therapist is to help me make my journey to mobility. I'm hoping for surgery within the next 6 to 9 months.

My next step, after surgery and weightloss, is travel. My plan is to buy a cargo trailer with the intention of converting it to a small camper trailer. In my past, I've been a gypsy and I want that back. I've seen a lot of this country and met some awesome people. On the other side, I've missed a lot. I want to camp in the Painted Desert, stand on the rim of the Grand Canyon, hike in the Sierra Nevadas, stand in the mist of Old Faithful and drive the Pacific Highway. There's a lot of places on my list but this will get me started.

There are a few people in my life that think I'm crazy for that last part and I love them. I'm not going to regret the last 10 years because of the time I've had to spend with my girls and my mom but I've missed traveling. I've missed road trips. My hope is that my people will come to support this decision and my dream. I'll keep you posted on my journey....

Dream!!

Fighting

I've been doing my physical therapy for a few weeks now. I still can't straighten my left leg completely. I'm still walking with a pronounced limp. I'm still fighting though. I have 6 more weeks of physical therapy left.

I'm still waiting for a referral for a Rheumatologist. I've been waiting for 3 months. My new primary doctor pretty much sucks. I called her Wednesday and they told me I would have an answer in 2 days. That didn't work so I'm calling again tomorrow. While I'm having her jump to that referral, I'm going to get one for Rehabilitation Therapy for my RA. My RA hit so hard and so fast that I lost a lot of muscle so there is a lot of weakness. Especially in my hands and arms. Picking up my 12 pound dog is an exercise in massive frustration. My inability to do things for myself is the cause of a great deal of my anxiety and depression.

For those that are confused, it is definitely possible to feel both of those emotions simultaneously. More often, one follows minutes after the other. Then the anger. The anger is as bad, if not worse, than the anxiety and depression. I'm not angry at anyone but me but those closest to me bear the brunt of it. Most days, those three emotions overcome everything else I'm feeling. Most days, my small victories don't even show up on my radar because I'm overwhelmed by those negative emotions. I constantly and consciously having to remind myself of the positives in my life. I have to make myself show gratitude and appreciation to those that help and encourage me. When people ask me why I'm using a walker or wheelchair and I explain RA and what it is and they compare the arthritis in their finger to the agony in most of the joints in my body....I almost snap. I'm not saying they don't hurt. There are so many diseases that bring so much pain to those that are fighting but don't compare the common cold to cancer. 

I got that off my chest. I hope no one was offended but if you were....you can get glad in the same pants.

Still Here

I'm still here. It's been 6 months since my last post and there have been some changes in my life. Large and small. Some of the things I am going to be writing about are just flat out embarrassing though. This is basically going to read like a diary or journal but since it's really for me, I can do that.

I'm still in a flare up. This one has lasted longer than the others ever have. I've had to move in with my sister because I can't take care of myself and it is just too much for Maggie alone. I also had to have knee surgery on my left knee. I had an untreated torn meniscus and it created more problems than my general RA stuff.  But anyway.

I got stuck today. Now in the south, when someone says that, they generally mean they got stuck in the mud. Not me. I got stuck in the bathroom. On the toilet. I couldn't get my legs to work. I was just stuck there. All the rocking back and forth just could not get my momentum up enough to "lift off." It's funny now but 45 minutes ago I was crying. What normal 38 year old woman can't get off the toilet? It was humiliating to have to call my 13 year old daughter into the bathroom to help me up off of the toilet. Another new thing I'm having to deal with. I can't shower over here. It's a standard tub/shower and I'm terrified of falling. I have to pick my legs up over the side and since my RA is flared up and the knee surgery I could fall getting in or out or even just by turning around. It's like my legs are not listening to the signals that my brain is sending. Mom has a shower chair I can have so my sister is going to go get that for me. I am desperately hoping that will help. Also, I shaved my head. I can't brush my hair anymore so to fix that I shaved my head and bought some wigs. I'm due for a "trim" but until the shower seat gets here I'm waiting.

I was nervous about moving in with my sister because of her dogs that are large and active but they ended up being the least of my worries. They are afraid of my walker so when they hear me coming, they move. Except for Petey. Petey can't hear me because he is half deaf. He moves when I nudge him though. My sister and I are sharing a room so she can hear me in the night. She sleeps on a queen bed with all of her dogs and I sleep in a twin with my little dogs. Usually just Onyx though since Bo likes sleeping with my sister. It's working so far even though it's not something we are used to. I stay parked in my wheelchair in the living room and it can go to the kitchen if I want something. To get down the hall to the bathroom and bedroom, I use my walker. Since my legs aren't working correctly right now, it's the best I've got.

I'm discouraged though. I had surgery on December 9th and it seems like it's not getting any better. I know knee surgery doesn't mean I'll be fixed immediately but damn. I thought by now I would be able to walk unassisted. I finally start my physical therapy tomorrow so maybe after that? It's 4 weeks of therapy 3 times a week so there's got to be some improvement after that. Right? At this moment though, I just feel like my life is a series of challenges that I'm not meeting.

“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....