you give and take away…

I haven’t written in awhile, so midnight while watching Soul Eater is the perfectly logical choice, right? Of course. As I’m curled up here in bed, wishing my summer had taken an incredibly different term, the start of school just days away (f I can afford it, but that’s another rant for another day), not knowing how my life is going to play out, it’s sort of terrifying watching where my life is going.

On July 9, I had repeat back surgery, this time to do a partial hardware removal. Things were expected to be fairly uncomplicated. Two day hospital stay, sent home to recover, not a big deal, right? Well, I should have known better. My two day stay turned into a nine day stay, as I developed hospital-acquired pneumonia, diagnosed the night my fever hit 104.7 degrees (highest fever of my life, man). Nearly a month later, I still have a Foley in. Walking is incredibly difficult, as my high school knee injury decided to completely flare up and crap out, so I have a very attractive full leg brace. I knew at one point I may need a full leg brace, but it was a hard  pill to swallow alongside the back surgery.

The surgery also gave me wicked insomnia. I’m able to sleep, some nights, but not others. My primary (who is named Happy Thanksgiving… yeah… really…) prescribed Lunesta but my insurance is denying it and we’re having to fight for it. Le sigh. Just like my Lyrica fight and that took a few weeks to get approved. It’s hard, man, it’s hard.

The simplest trips exhaust me, the most basic chores make me feel like death on a stick. I’m struggling with recovery, and it sucks! It’s been a rough, rough road. I just don’t know how I should feel about it, even. Should I feel relief that I’m recovering? Regret that things have turned out so poorly? Thankful that, for the most part, my doctors finally got their heads out of their asses are and trying to help me?

I find myself terribly angry at God. While at one point, my faith is keeping me going, another part is filled with rage and anger. Why did He let things turn out like this? Why can’t He just freaking HEAL me already? He’s God, right? Surely He can make me better and take away my pain. But at the same time, He’s not. And I can’t understand why. I can’t understand what lessons He wants me to learn from this.

My life has become a whirlwind of appointments, and when it’s not, doing some simple picking up and laying in bed playing Persona 4, Final Fantasy, or Zelda. Or watching Netflix. It sucks that this is what my life has turned into. It sucks that this is how I’m spending my summer. Not having fun outside, not having fun with my friends… but laying around in pain. I mean yes, good things are happening this summer, but at the same time, so much not good is happening. I’m watching my health fall to shambles, and not a single thing can be done.

I just wish there was an option to make it easier. I just wish there was an option to make this pain go away. I just wish there was an option to make things better.

Jesus loves me, loves me still, though I’m very weak and ill

I feel like my world has been shattered and turned upside down. I knew going into my appointment today that there was the chance I’d need another back surgery, but  now it’s facing me dead on and I’m scared and I don’t know what to do.

I went in for my two year followup today (two years is tomorrow. I graduate a year from that. Cool).

I looked super classy, man, super classy.
And… they don’t know why I’m in so much pain. They don’t know why the facet blocks failed, why physical therapy is failing, while I am just suffering at the moment. There is no answer. The doctor is considering removing some of my hardware, but it doesn’t come risk-free. At the same time, leaving them in doesn’t come risk-free. So do I put myself through another surgery? Or do I just live with the pain? Do I do a surgery that could cause possible future NF complications, or do I continue with the way things are, suffering?
The doctor can’t give me clear-cut answers. There are no clear-cut answers. I have to make a decision, and live with the ramifications of it either way. I wish I did have a clear neon sign telling me which choice to make, but there aren’t any of those. 

Bye Bye Appendix!

So I figured I’d write about having my appendix out.

I had a general malese feeling all last week. I was generally weak and tired, but not too bad from Sunday on. Low grade fever, chills, just had what I figured was a general run-on-the-mill infection. By Wednesday I felt fairly crappy, and didn’t even fold most of my laundry by the time I did and just chucked it in the laundry basket. I muddled through thanksgiving and felt worse and worse as the day went on. I woke up on Friday feeling terrible. I spent most of Friday arguing with my friend about if I should call the doctor or not, and she finally convinced me to at least email the nurse advice line. I emailed, and they told me to call. I called, and they told me to go to urgent care. We couldn’t go straight to UC as we still had to finish up some things in Hastings, so we did what we needed to do, then headed to the Highland Park clinic.

The clinic sent me straight to the ER, telling me not to eat or drink anything, that it was likely my appendix. I didn’t believe them as I’d been told this before and figured it has to be kidney stones or the flu or something. It couldn’t REALLY be my appendix this time, could it? I wasn’t running a high fever or anything, but after I got triaged and into a room at St Joseph, they ran a CT scan.

Not long after, Anna and I hear the words “something something really appendix.” We don’t know if they are saying it’s really my appendix, or if it’s not really my appendix. I’ve been seen in hospitals before with suspected appendix issues, but clearly it’s never been. Welp, this time it was. And that’s when the downward spiral started. Pain meds, antibiotics  I quickly got sicker as the night went on because I got my diagnosis as 1:30 am, into a room a 2:30, and surgery was at 6 am. However, appendicitis is very fast acting so I was a sick young lady by the time the surgeon saw me (who commented on how sick I looked). I remember being strapped down on the OR and being given an oxygen mask, but not much after that! The next thing I remember is absolutely flipping out in recovery because I didn’t have any friends there (Anna had gone home to sleep until after my surgery) and they hadn’t allowed me to bring my bear or blanket with me. I had no comfort objects in my general vicinity  They did give me some pain meds, and I calmed down I guess. I was completely maxed out on pain meds (I remember being told I’d stop breathing if they gave me more, and I was really suffering post op!). and eventually, I’d stabilized to the point where I was returned to my room. When I of course got on my smartphone and made pain and drug induced smart-phone posts all oer the internet. I even emailed professors, concerned about making up course work. Ever the good student, I am.

My friend Susan contacted the church pastor, and he and my roommate actually arrived at the same time. We talked for awhile, and then he left and Anna and I just hung out for awhile. After Anna left, CJ came for a bit. We’e made up as friends and that is a good thing I think. 🙂 We played Pokemon and talked and stuff. I didn’t sleep much because I was up all night in a combo of in pain and coughing. It sucked. Steph kept me company when I was up in the middle of the night coughing my lungs out and watching Inuyasha, even though I was a crabby Pikachu. She is a good, good friend.

Sunday was similar with visitors (Susan and Aaron, Anna and her Mom, then later just Anna), doctors, smartphone posts, and watching anime on my laptop. And me freaking out to my professors about ALL THE WORK I HAVE TO DO, and them trying to tell me to just worry about recovering and once I’m healthy we will cross those bridges. Spent a lot of time talking to friends (Steph!) on Messenger too to keep me company. 🙂

Anna and her parents rearranged the room. Set up Anna’s old bed for me. YAY! My stuff got rearranged so I’m in the process of trying to find all my stuff… that’s kind of interesting… I’m still running fevers and I’m dizzy.

I did learn a valuable lesson. I’m lucky I was in the ER/hospital as I quickly got sicker. I know that appendix issues can be stress induced and I know I have been stressed lately. I know it’s also not very smart to put off going to the doctor when you are sick and I saw how quickly after I got diagnosed the downward spiral happened – even the surgeon commented on how sick I looked. I still don’t look all that great. I can’t keep putting off going to the doctor because while things worked out this time… I could have wound up with a ruptured appendix and gotten very very sick. I’m still sick (feverish – but it’s only 100.8 and the call the doctor point is 101) and dizzy, but this time if it doesn’t go away, I will call the doctor even if they think I’m being weird and paranoid for bugging them.

My health is a far too valuable thing to lose. I need to keep myself healthy. I’m horrible stubborn and wanted to do my homework while in the hospital – neither Anna or Steph will let me (nor will they let me do it while recovering at home, how rude!). Perhaps getting so sick is my body’s way of telling me that sometimes, it’s okay to cut myself some slack and I don’t need to set such impossibly high standards for myself. That it’s okay to LET myself be sick. I mean, who emails disability services and their professors mere hours before their surgery to arrange make up work? And then follows up just a few hours after, freaking out about how they are going to do everything? Disability services kind of ripped my head off and told me that getting my appendix out was a perfectly acceptable reason to take a break and I really need to take care of myself before I worry about all this. 🙂

I think I’ve learned a lot from getting one small body part taken out.

Chronic Pain Chronicles

Rate your pain on a scale of 1-10 with these really cheesy, not very helpful faces.

 For as long as I can remember, I’ve lived with chronic pain. I don’t know what it’s like to live a day without pain. It’s so far out of my grasp that I cannot even envision it, I don’t remotely know what it would look like. I was officially diagnosed with fibromyalgia last fall, but I’ve had the signs pointing to it for years. Interestingly enough, emotional trauma can cause fibro and I can’t help but wonder if my childhood played a role in my development of the disorder.

It’s hard. Some days, just a simple chore like doing the dishes takes everything out of me, and then the trash still leans against the door to be taken out, the clutter spreads over the floor, and I flop in bed with a n64 controller or a TV remote. It’s hard. Some days just crawling out of bed to do a chore as simple as get a glass of water takes every ounce of effort I have.

It gets downright soul-crushing at times to know that all your friends are out having fun and living their lives, yet you are curled up in pain. Your life is on your computer, because being in the real world and interacting with people is far too painful. You ache and you hurt and it’s to the point where you just plead with the doctors for a relief from the pain.
What sucks? The relief for my pain is out there. But my insurance refuses to cover it. Living in pain and knowing there are drugs out there to help but you cannot afford them is a real kick in the spirit. I try to keep upbeat and positive about the struggle, hoping maybe this treatment will help, maybe this drug will help. But I’m not Molly Clock from Scrubs, I can’t keep rolling with the punches and keep upbeat and happy. 
It takes such a toll on my spirit. And it makes me hurt inside as well as out. I am sick and tired of being 24, and living in chronic pain. I’m sick of it. And I just want relief from it. I don’t care if it’s a drug, a treatment, a surgery. I don’t care what it is anymore – I just want to live pain free for once. Some days I think just one, just one pain free day, completely pain free, would be enough. Just so I know what it’s like. Just so I get a taste of what it could possibly feel like to not live like this.
I’d be happy to get the pain down to a tolerable level. I even told my doctor I’ve given up hope of ever being completely pain free.
But oh, how I wish it were possible. 

Nine months down

Medication and hydration! 

Nine months ago I have my back fused. It’s kind of hard to believe it’s only been nine months, and in other ways it feels like the time has flown by. Nine months ago I had rods put in my back. Nine months ago I had major issues with rehab and wound up in the ER.

It’s been nine months, and how have things changed? Do I regret the surgery? Part of my recovery problems have been my fault. I still carry around a heavy backpack. I had a bed collapse on me because I was digging around under it. I sometimes forgot to call to schedule follow ups.

I guess I’m partially still bitter because of my NF1, I still have issues with my back – hairline fractures, scalloped vertebrae  and dural ectasia. I will never  have a full recovery from pain, and it’s a hallowing thought.

But I don’t regret the fusion. I’m taller now, and the pain is somewhat better, although there are still days where I’m curled up in my bed with a N64 controller and a cup of tea because anything else hurts too much. I totally rocked the hospital gown too, as evident in this gorgeous picture taken 5 days after surgery (and before a shower and real clothes, ick!)

I look like death on a stick.

I had my share of adventures in the hospital, such as the IV falling out and the weird feeling of a catheter. Learning how to walk again was difficult and painful, although I caught on quickly. It was awhile before I could use my crutches the way I was used to again, and I know had I not had limited mobility to begin with, walking again would have been a snap.

My scar is healing nicely, and so that’s good. I have almost all my mobility back. I do sometimes (I’m hyperflexible) sit or lie in weird positions. My back is like “OH HAI ANGELIQUE YOU HAVE RODS IN ME REMEMBER LOL” and I’m like “oops” when I realize I can’t always move exactly how I used to. Thankfully, bodies are adaptive and I just learn new ways to move around! It’s still terrifying, though, because my surgery was so major and I still live in fear of the doctors discovering something that went wrong after surgery and having to go back in and fix something. I wonder if if all the pain I’m still in is normal. I wonder if my bones won’t fuse properly. I wonder if the rest of my spine will shift (not unheard of with NF, but not common either) and I’ll have to have more of my spine fused. And sometimes I still feel like just a scared child who wants someone to hold her and tell her that it’ll be alright, which I don’t think is a bad thing, per se, but at the time time it’s heartbreaking because does anyone really know if it will be alright?

Perhaps it’s hard because the recovery was brutal due to rehab messing things up and my NF. Perhaps it’s difficult because I still live in pain due to both the NF and the fibromaliga. But is there a way things could have turned out different? Had I not had the surgery, my spine would have continued to curve and that would be, well, bad. I would have had to have more fused and quite frankly, that would suck. My scar is impressive enough as is. But yet, nine months out, I’m still living with pain and I’m still struggling. And I can’t help but wonder – three months later, will it still be like this?

But at the same time, I find myself grateful that I’ve been given the chance to heal and the chance to move on with my life. I’m stronger than I was before surgery, both emotionally and physically. Even if my back doesn’t fully heal properly it doesn’t mean that the surgery was a failure, but rather that there’s a different plan in store for me. The ride may be difficult and bumpy, but it doesn’t mean that I’m not in it for the long haul. But no matter what, nine months with rods in my back have passed and I’m recovering, in some way, shape, or form.