Hi all,
It's been a while since I posted about
myself. Frankly, it's been a while since I posted period. I still lurked from time to time, but being a full time grad student in an extremely rigorous program plus dealing with CP and some other health issues generally leaves me with very little free time, energy, brainpower, vision, and ability to function at the end of the day. Hence my relative absence from HW.
Anyways, I thought I would break my silence and write a post about
me. Some of the older members here who know/remember me encouraged me to post, but I also wanted to post because I could really use the support. Living with CP has never been easy, but it's been a particularly rough few months for me.
Since I haven't posted in such a long time, I should probably "start at the beginning," or thereabout
s. For those of you who don't know me, I'm somewhat of an oddity to this forum because of all places, my pain is in, around, and behind my eye. Without going into too many details, I've had major eye problems forever -- congenital muscle issues mostly. But my chronic pain began 7 yrs ago with a particularly nasty injury to my R eye. That set off a whole lot of problems. And additionally, within the past couple years, we've discovered that I have at least 2 different autoimmune eye diseases that are further contributing to my pain and other ocular symptoms. Even though we have some diagnoses, I'm still pretty much a medical mystery to everyone because no one knows exactly what is going on, nor how to fix it. And I've been remarkably resistant to all potential treatments that we've tried of the years.
Pain management has been a difficult process for me as well, as I've also been historically unresponsive to everything we've tried there, too. On the medication side of things, we now know that it's actually because I have a genetic liver condition that prevents me from metabolizing many drugs the way I should, including pain medications and a whole host of other meds. So their effects & the meds that we can use are very limited. I do have an implanted neurostimulator -- the same device as an SCS, but the leads are in my face instead of my spine. It helps some, but is also limited in its effects/uses.
I do the best that I can, and thankfully, my doctors are fantastic. But it's been a real struggle. I'm sure you all know how pain affects every single aspect of your life. And the further along I get in my education, the harder it gets to deal with the pain because I use my eyes so much & they get no break, so the pain just builds and builds until it gets out of control and I can't eat, sleep, drive/do work/use my eye, or really function at all. And one of my autoimmune conditions also continues to worsen.
This semester in particular has been extremely trying pain wise. Academically I'm actually doing fine (working my butt off, but that's the nature of the beast), but physically it's a different story. Over the last few months we've had to make a lot of adjustments to my medication and the physical accommodations I get from the school (my vision is also severely impacted & worsens with fatigue and pain). Thankfully I'm currently in the midst of winter break right now, so I have a few much needed weeks to recharge. But I'm nervous about
what will happen when I go back -- and before people mention it, taking time off is not an option. I've already done that, and the fact is, the way I am now is as good as I'm ever going to be. Plus having already taken a year off for other health reasons since starting grad school, I doubt the administration would think highly of me taking more time off -- nor would I, for a variety of reasons.
I know that this post is incredibly long, and I apologize for that, but I though that putting things in context might help. Frankly, I'm just scared -- scared that my pain is going to continue to get worse (it doesn't seem possible, but I know that it is) and we're not going to be able to manage it. Scared of how much the pain is going to continue to affect my life, seeing as I barely function as it is. Scared because I continue to lose functional ability of my eyes, and this is going to go on for at least the next year (which is when the "active phase" of one of my autoimmune eye diseases is expected to run its course).
And one of my biggest fears at the moment is that I'm scared that the progression of this disease is going to lead to a whole new kind of pain. As in the last few months, I've noticed that when my eye pain gets really bad, I now get radiating pain across my face that corresponds exactly to the areas innervated by the first two branches of the trigeminal nerve. Because of my career, I am very familiar with anatomy and physiology, so I understand what this means as well as my docs do. And the concerned look on both my PCP (manages my pain) and my ophthalmologist's faces when I told them didn't make me feel any better.
Basically this new symptom means that there is now so much inflammation behind my eye that it's starting to compromise the function of other anatomical structures in that area. Both of the first two branches of the trigeminal nerve pass through the orbit, and the inflammation is compressing them, leading to what is perceived by my brain as facial pain. The problem is that there are many other important nerves and blood vessels in that area, that if compromised, could cause severe problems, including complete loss of vision and function of that eye. And if the inflammation worsens, that is where we are headed.
I cannot take NSAIDs because of my liver, and I have proven unresponsive to even massive doses of steroids when used in the past for my eye. Immunosuppressants (because this inflammation is due to an autoimmune disease) don't usually work well enough for this condition to be worth the risk. And orbital radiation, which is traditionally the only other medical option is also not expected to work in my case. That leaves orbital decompression surgery as our only option if things worsen to the point where my vision becomes threatened or compromised. And that scares the hell out of me because it essentially involves chiseling away a bunch of bone from the skull at the base of the orbit. And according to my ophthalmologist, the surgery has it's own major set of problems because it distorts the anatomy in the area and can compromise the neuro-muscular function of the eye (which in my case, because of my original eye injury, is already compromised to begin with).
I just don't know where else to turn for support anymore. My doctors are doing everything that they can, and I believe in them. But I'm more scared and unsure of things that I have been in a long time. And while my family has always been there for me, when it comes down to it, they just don't understand what I am going through -- how much CP affects every aspect of my life, what it's like to be in constant, often severe pain, or how scared and helpless I feel. I feel like to them, all I'm doing is complaining. And because they don't get it, and they also feel powerless to help me, they get frustrated or annoyed with me. And that makes everything worse. So these days I really just try to keep to myself. Nor do I really have any friends that I can talk to about
this. So I thought it would be good to talk to you folks. Everyone here has different problems, but at least you can all relate to CP, and how it affects us, as well as the hopes, joys, and fears regarding its treatment and that are just an everyday part of living with pain. I apologize again for the length of this. But I am grateful to those of you who read or at least skimmed through this and any words or support or advice that you might have.
Skeye
Post Edited (skeye) : 1/6/2014 11:34:26 PM (GMT-7)