Removing The Mask

"Pain is always new to the sufferer, but loses it's originality for those around him. " "Everyone will get used to it except me."  -Alphonse Daudet 

I want to be understood in a way I can never be understood. That's a  reality I have to learn to accept with invisible pain. I try to explain until my face turns blue, but my words are often forgotten.
Speaking out lout about pain doesn't come easy for me. It's awkward for everyone, and no one knows how to respond. The normal response is pity, and pity is uncomfortable.

Last week it was my boyfriend's 30th birthday, and I wanted to bake him a cake. We were also invited over to his brother's house for dinner. These are all things you normally wouldn't stress about, and people who don't live with chronic pain don't have to usually think twice about.
All day I was cautious of everything I did, so I wouldn't use up all of my energy (spoons) so I wouldn't  be stuck in bed. I did not want to jeopardize making my boyfriend his birthday cake and joining his family for dinner that evening. It's important that I let go and show the real me. I want to be a part of his family more than anything. 

The time came where we were getting ready to leave for his family's house and I crashed. I ignored the pain for as long as I could until I was tired. I lay in bed until the pain was not as severe, and I could get up and walk with a shuffle.

I was able to make him his birthday cake, and we ended up making it to his family's house for a nice dinner. Nothing comes without a consequence with illness. I had a difficult time concentrating and talking, and I wondered if anyone noticed. If they did noticed anything at all, it was probably my awkwardness, clumsiness and the periods of time where I became silent. At one point, I was sitting on the bench they have at the dinner table, and I decided to prop my leg up because my right ankle and hip were sharp and throbbing. I was talking with my boyfriend's sister in law, and I moved in some way that my knee shot out of the socket. My whole body froze, and my heart started to pound. I could feel my face starting to turn red and my eyes starting to tear. I quietly shifted my knee and it made a loud crack back into my knee socket. All while going unnoticed and still carrying on a conversation. 

I become extremely nervous around others while in pain. I know they can feel the nervousness too. This type of pain is hard to fake, and I have a more difficult time trying to 'act' healthy. Trying to cover it up makes me nervous because all I can think about is my joints being stabbed and pulled apart.

Then there's sensory overload. When you're experiencing a lot of pain, it's difficult to socialize because pain makes it almost impossible to think. "The more people in the room the greater the stimulus on your nervous system, and consequently your pain."
I'm becoming less social these days than I'd like to. It's difficult to engage with people while hurting all over (it's all you can think about) and I will then become quiet and end up leaving the room. It's not that I don't want to be around anyone because I don't like their company, but that I'm physically more comfortable in a room that's quiet.

I have a strong hold on acting healthy and pain free, it's a coping method and a way to avoid pity. Acting pain free one moment, and then not being able sit up right the next, is confusing to others and causes judgment. I don't always have the words to describe the pain I'm feeling. The severity of the pain ranges from tolerable, and able to carry out some activities, to intolerable where I can't speak.

It's not fun to surrender to pain, and when I have to, I like to do so in private, because it usually involves sadness, anger, and sometimes tears. It also involves telling myself that the pain does not define who I am, and I need to be kind and not hard on myself. 
Even the strongest are weakened by pain and tests the strongest souls.  It's a constant pull and pain changes people. The loss of abilities that once defined who you were, are powerful and sad. I have to try and regain strength everyday to overcome endless limitations, lack of living, and loss to not let it take over. 

Old, New Or Same?

A few weeks ago, I was looking over my initial diagnosis records from Mayo Clinic back in 1996, and I noticed my SLE (systemic lupus erythematosus) showed that it was positive. 

I had lupus this whole time? I contemplated for a few days whether I had a misdiagnosis. I also questioned whether I was in good hands and receiving quality care with my doctors over the years.  

A week later, I had a follow up appointment with my rheumatologist, and I showed him these records. He ran various blood tests to confirm that I have a positive SLE along with a positive rheumatoid factor. I have more symptoms of joint erosion with rheumatoid arthritis, however, it is now certain that I have two autoimmune diseases; juvenile rheumatoid arthritis and SLE (lupus). There's no way for doctors to tell which disease is more active and causing symptoms. 

Lupus is a chronic autoimmune disease that causes inflammation throughout the body. It can affect the skin, joints, kidneys, lungs, nervous system, heart and brain. Lupus flares from mild to severe throughout the course of the disease and patients have times when the disease is more active and times where the disease is more quiet. When it's active, other immune cells are starting to attack your own body (in a similar way rheumatoid arthritis will attack the lining of your joints) and causing widespread inflammation. When inflammation is present in lupus, it causes abnormal blood vessels, and the antibodies then end up in cells that attack the organs. 

According to an article I read on rheumatoidarthritis.net; "Although the prospects of long-term survival for individuals with SLE is better today than it has ever been, largely due to treatment breakthroughs, the likelihood that the disease will prove fatal is still high. Someone who is diagnosed with SLE at an early age (around 20 years) still faces a 1 in 6 chance of death by the age of 35."

That was a little daunting to read, but the good news is I'm beating the statistics. 

I'm confused if I have RA with overlapping SLE, or SLE with overlapping RA. I don't know which disease came first, if I had the correct diagnosis, or if doctors are certain what the true diagnosis is. If no one is able to accurately diagnose an autoimmune disease, then aren't all autoimmune diseases essentially the same?

Treatment for both RA and SLE are similar by using medication to slow down the activation of T-cells and B-cells, and by reducing inflammation present in the blood. In addtion, my doctor added Plaquenil which is a drug used to treat malaria. It belongs to a class of medications know as disease modifying antirheumatic drugs (DMARDs) to treat autoimmune diseases like lupus and rheumatoid arthritis. 

Some good news...

My rheumatologist also tested my C-reactive protein (protein found in liver to detect inflammation) and it was remarkably low (0.03). Standard range is below 0.3 mg/dL. This is much better than the results back in November, when my C-reactive protein was 2.40. These results suggests that my Actemra injection is working and reducing inflammation. I have been on Actemra for just about one year, and it does seem to be helping, although, I'm still experiencing agonizing pain and fatigue daily.  

My inflammation has never been this low (that I have on record anyway). I will go back for another follow up appointment in April to see if the inflammation is still under control. 

My doctor and I discussed starting Rituxan, which is a cancer medication that interferes with the growth and spread of cancer cells in the body. I heard good things about this treatment and I'm wondering if it would help more with pain and joint damage. In addition, you only have to get the infusion once every 6 months, versus the injection I take once a week.