Scleritis is the inflammation of the sclera (white part of the eye) that can often times cause debilitating pain, light sensitivity, black outs from the intensity of the pain, sleepless nights, anxiety, vision loss (temporary and permanent). Everything you will read on scleritis will tell you that is always linked to an underlying cause. This is not the case. While there are underlying things that cause the scleritis, what they fail to tell you is that it isn't always pinpointed. Did you know that there is a very high percentage of people who never have an underlying cause diagnosed or found? The percentage of people with scleritis, who do have an underlying cause diagnosed is actually a lower percentage than those who never find the reason or cause. This is the glory of autoimmune diseases.
Attractive, isn't it?
The pain is something that I can not describe. I will admit that it has been so bad at times I have contemplated shooting my eye out just to make it stop. The anxiety comes from knowing it is going to happen again, you just don't ever know when. The last flare up I had was so intense I actually blacked out.
My first flare up was in September of 2008. I remember it clear as day. We had just had a HUGE hurricane come in. The pain from that was the most excruciating thing I had ever felt in my life. I saw a specialist, and I was given antibiotics and sent on my way. The antibiotics helped with the swelling, but definitely NOT the pain. I remember the days, weeks, and months of pain I was in because it went by undiagnosed. The pain did eventually go away....months later.
These episodes started back again in February of 2012 and have been nonstop ever since. The prednisone dosages kept getting bigger and bigger; and I kept getting bigger and bigger. I could not for the life of me figure out why I could not lose weight and why I kept putting it on no matter what I did. A year plus on a prednisone roller coaster will certainly do it to you! I honestly had no idea how bad prednisone really is for you. I ditched my opthamologist that initially helped point me in the right direction because I just felt like a number with them, and they wanted me to only use who they told me to, and the fact that it went undiagnosed for so long. I sought out an amazing specialist who specializes in auto immune related illnesses, especially with scleritis, and she has honestly been the best thing that ever happened to me. Unfortunately, she resides in VA. Fortunately for me, she is in Texas 2 weeks out of the month!
When my eye isn't flared up, I am still having other inflammation issues. There are nights I have woken up feeling like someone has given me an indian sunburn all over my entire body. As my little rockstar and Alicia Keys like to sing "this girl is on fire" There are other times I feel as if every joint in my body is on fire, (I take a lot of cold showers and hot baths) and then there are times I feel as though I have been hit by a truck and every ounce of me hurts like I have the flu. Sometimes, on a good day, I feel like the tin man from the Wizard of Oz, or everything will all just go numb and tingle. Last night, just from cooking, my hands and wrists started to swell and contort in ways I have never seen. I felt like my wrist was about to break. I am literally in pain 24/7 throughout my entire body, and I guess when that isn't enough, it manifests through my eyes. Your eyes are a window and are signs when things go awry within your body.
There are just those days that it really has just taken everything in me to actually get up, go, and attend these events. The fact of the matter is; everything is getting worse, not better. I am very grateful that Mr A and I have arranged our schedules in a way that he can pick up our little one from school and do some of the more strenuous activities with her like take her swimming, or to the park, and preparing dinner before I get home from work. Have those of you with little girls ever think there would be a day that you physically could not fix their hair? It happens in this house, and we just do the best we can.
I am still on prednisone and my current dose has NOT been containing it this time. I have been on indomethacin, mobic (meloxicam), plaquenil, flexeril, and none of it has helped the inflammation subside within my body. My sed rates and c reactive proteins are still off the charts, but nothing has been pinpointed or diagnosed as of yet. I have never had prednisone not work, either. We are now talking about a long term treatment plan. (Did I mention I LOVE my specialist?) I hate prednisone, and I hate what it does to me. I usually feel like I am in a bad recurring episode of the Twilight Zone that is never ending, or on one of the worst trips of my life. I feel completely cracked out, can't focus, and in a complete daze. I can't taste anything either. Chocolate tastes like ass! On what planet does chocolate taste like ass?! Everything is completely out of whack, not to mention my poor stomach from all the drugs listed above. There isn't much I can actually eat these days that doesn't make me sick.
I also feel like one of these most days when on prednisone!
While there is no "cure" there are things besides prednisone that can be taken. This is where the double edged sword comes into play, for me. My body is wrecked anyways add prednisone on top of it, then you have these meds/ other treatment options that also put me at risk. They will suppress my immune system and put me more at risk for things like tuberculosis and lymphoma. They give me the inability to be vaccinated, and these treatments open myself up to be more susceptible to illnesses. My body is fighting itself and this is how they know how to curb it at this point in time in medicine. It is a treatment, not a cure. I have been tired, and I have been desperate at times, but never desperate enough to put my health or life at risk. This is why I have researched the hell out of all my medical options (doctors and specialists included) and we (Mr A and I) have decided that Humira is going to be the treatment option that we explore at this time. I love the way Mr A said "death is a side effect of life" when going through the decision making. It really kind of put some things into perspective for me. Those that know me, know that I don't take these things lightly. We have looked into Cellcept, Methotrexate, and Rituxan as well, and Humira appears to be the better option. I will be closely screened and monitored on a regular basis with this drug. I have my appointment with my rheumatologist in a couple weeks, and I have to admit I am kind of excited and scared at the same time. It is definitely a lot of process of elimination and I still feel like one big science experiment, but this is my life and my reality.