From fear to hope

Something that is a regular part of my life, and has been for all twenty-eight plus years of it, is being in and out of doctor’s offices. Everything is intertwined and, as my primary care doctor put it, “Well, your body doesn’t always read the textbook.”  Which, you know, while it’s a difficult pill to swallow at least I’m unique, right?

But what I find most terrifying out of all my medical issues isn’t what I have. While a lot of them suck horrifically – NF1, fibromyalgia, and over a dozen more – what I hate even more is the disorders that we don’t know why I have. We don’t know why I randomly can’t eat for a week, and every attempt ends in me puking. We don’t know why while I’m in these flares I can barely leave my bed and I’m not even strong enough to play video games. We don’t know why despite throwing every nausea medication in the book at it, it’s still not enough.

Because, you see, I would rather have something scary that I know what it is, then something mild and easily that I don’t know. The unknown is one of the scariest parts of being medically fragile. Knowing, at least, would give me a definitive answer.

For now, I live every day in fear. For now, I live in fear that my stomach will stage a mutiny again and I’ll be back into the vicious cycle of the stomach issues from hell. For now, I live in terror that the GI will brush me off again. I worry and worry and worry that every test will turn up normal and we’re back to square one.

But this doesn’t mean I’ve given up hope. I know there’s a diagnosis out there for me. I know there’s an answer to why I’m like this. And even though right now it feels like there’s no hope whatsoever, I know there’s still a flicker of hope out there. I know that one day, my fears will melt into hope again and I will have the answers I need for my medical crap.


Medical Nightmare

So, this current update is coming to you live from Fairview Ridges hospital! Yay! I will spare you a picture – I promise I look super sexy and dazzling but y’all really don’t want to see it. I’ve been live-updating on Facebook as well as posting in groups, chats, but I thought I’d post a central update that has everything together.

I went to my primary doctor yesterday. My appointment that I thought was scheduled for yesterday at 120 was actually… September 4th at 140. I nearly cried, but they managed to get me into a walk in with a different doctor. And back earlier than the “over one hour” window I’ve been quoted. I guess I looked awful. Which the nurse informed me when she saw me. Awesome. And I’d lost ten pounds. Even more awesome. And I was running a fever! With all that stuff, I was shuffled to the ER.

CT scans. Blood tests. IVs. Oh my! HELLA low blood sugar – 53. Right now as I type this, it’s up to 70 so while not ideal, it could be worse. Low magnesium. Liver out of whack.  No throwing up since I’ve been here, but also no eating. We’re going to try some Jell-O soon.

There’s a slim chance I’ll be sprung free tonight, but we’re looking more likely at tomorrow. And amusingly, that appointment two weeks from now is now my hospital follow-up. Because I don’t want to see random doctor – I wanna see MY DOCTOR DANGIT.

We all sing with the same voice, and we live in harmony

This is what sick looks lik. This is what sick IS. I don’t look it? You don’t realize that my body is fighting itself. You don’t realize that I’m allergic to four antibiotics,  an asthma medication that would make my life a lot easier, and a food allergy. You don’t realize that I have an autoimmune disorder, a neurological disorder, rods in my back, an eating disorder, PTSD, anxiety, and a non verbal learning disorder. You don’t realize that I have a balance disorder, that I have a crapload of medications surging though my body. I don’t look it, but you know what? This is what disabled is. 
 You see people like me every day, everywhere. You see people with disabilities everywhere you turn. We are people, just like you, and we have feelings, too. I understand it can be awkward at times when you come across someone with disabilities, but never fear! I’m hear to help you out and avoid awkwardness. NOTE: These are tips from MY personal experience. Other people with disabilities may have different feelings and a different take on life.

1. Never, ever ask me “What happened?” or any variant there of. If you want to know more about my disabilities, there are better ways to phrase it. It’s awkward for both of us when I explain it’s lifelong, and it’s chronic. Trust me, you’re not going to get an epic skiing accident story.

Nothing like that, I promise. You may think it’s making friendly conversation, but you’re really not and just making everyone uncomfortable. Also, don’t ask it while I’m clearly struggling to walk or with a door. I’m really not in any shape to answer you then, and you’re more likely to get a slightly rude come back. It’s rude to ask a stranger these type of question. Get to know me for me. And then ask your questions. I’m more than happy to talk about my disorders with you, as long as you are respectful.
2. For the love of peaches, NEVER ask me “can I ask you a personal question?” This is a good analogy:
It’s never okay to ask a random woman if she’s pregnant. Same way, it’s never okay to ask me if I’m able to have sex, if people want to date ‘someone like me’, if my husband/spouse/siblings are also disabled. YOU DON’T KNOW ME. YOU JUST MET ME ON THE BUS. It is NOT the time or place to ask me a “personal question” because generally? They are rude and disrespectful, and I am a human being, just like you. You wouldn’t ask someone without a obvious physical impairment these questions, so why the hell is it okay to ask me?
3. Don’t give me your home remedies. Don’t tell me such and such person.  Don’t tell me how if I do x, y, z I’ll do better.
Don’t tell me if I do crossfit, if I go paleo, my health will get better. I’ve already given up gluten for health reasons. I don’t need your ‘quick fixes’. My doctors and I have gone through many of these things. It isn’t helpful for you to throw this at me, despite your good intentions.
4. Oh my god, don’t play the Jesus card. You will seriously incur my wrath if you do.
If you say or act like that, I will get angry and upset. I have prayed so many times. I’ve wept to God to heal me, and he hasn’t, for whatever reason. God has a reason for leaving me disabled, and I’ve come to terms with it. Please don’t tell me to just pray. Please don’t tell me if I just trust God, he will heal me. He hasn’t chosen to heal me, for whatever reason. I don’t know what that reason is. I don’t know why I was chosen for this path, and why I’m destined to live a life of physical pain. But you know what? It’s just the way things are.

Now, I do sometimes want to have this reaction to people who are stupid about disabilities:

Really, I just wanted an excuse to use this picture

But you know what? We are people too. We are just like you. We laugh, we play, we cry, we sing. We weep, we rejoice, we bleed, we heal. We do things differently. But we all sing with the same voice, and we live in harmony.

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.