I have been pretty crappy in the writing department of late and I wonder if there isn’t one more lesson tied up in the large one I am currently learning from the universe. I suppose I should start from the beginning.

A couple of weeks ago, before I finally gave in and went to the doctor, I had a couple of days where it felt like angry, angry minions were crawling around my abdomen and back. I almost ended up in the emergency room with pain that was worse than labor. (A lot of women say this, let me clarify that I was in labor for 43 hours before I had a c-section so my “worse than labor” benchmark is pretty damn high.) It finally eased up and I got some sleep and then the next day Rin threatened to call everyone we know to tell them I was being a stubborn ass and refusing to go to the doctor and did I REALLY want that. No. No, I did not. So, I went to urgent care.

I had a sinus infection (which I knew) that OTCs weren’t kicking. I also had a kidney/bladder/UTI thing going on which I didn’t know about. (Yay for asymptomatic illnesses?) As a precaution, the CNP did decide to draw some blood (which they had to do twice because one of the vials clotted. Bwhee.) After two doses of antibiotics, I felt about 3000% times better and had no more abdominal pain and a lot of that ended up being chalked up to my kidneys. There were several reasons for that, including the fact that when Rin would rub my back during the worst of the previous episode, it would feel better and so…I floated along in a antibiotic daze and worked on recovering. After starting the Prednisone script that I was given to go with the antibiotics, I felt a WHOLE lot better and realized just how much inflammation my joints have been carrying lately. (The answer is a scary amount but more on that later.)

So, in a Prednisone fueled couple of days, I managed a neighborhood walk with Miss Ma’am and running errands without wanting to cry and it was good. And then I got a letter in the mail from the urgent care place that said they had been trying to contact me and they had information for me. I figured it was about my blood work results. Rin and I stopped by there after I had a massage with Natalie on Thursday and things were a bit odd from that point. The nurse kept acting like I had been ignoring her calls on purpose though I’d only received one voice mail and it wasn’t all that informative. However, my voice mail has been wonky since this summer, so, you know, I don’t know. (P.S. My VM has been wonky for a couple of months. As in, I just received a couple of VMs from JULY last week.) Then she was like, “Yeah, I’m going to get the doctor to talk to you about these results” and she left Rin and I in a room with me starting to freak out a bit. By the time the other nurse practitioner came in (a different one than I saw first), I was a bit wound and she made it so much worse. She basically was like, “You need a doctor” and she made me sound like a horrible person because I am a) sick, b) uninsured, and c) do not have a job and/or money. She treated me like crap, scared the hell out of me because my liver enzymes were REALLY high, and she refused to tell me ANYTHING that could cause that kind of abnormal blood work. (Upon later reflection, I realized that I am glad that I have medical knowledge and know that if something is wrong with your liver, one thing you absolutely should not take is acetaminophen. I shudder to think about someone in the same situation with this woman without that type of knowledge.)

So, we left. I was angry and upset and scared to death and the more stressed I got, the more I started to realize I was getting some twinges in my side again. Not pain, per se, but twinges. So, I tried to distract myself and figure out what to do while I waited for a call back from the clinic about where I might be able to go get quick doctor care that I could afford. The CNP called back and said that they had called Healthlinc but they were about to close, so someone would call me the next day. So, it was a long, restless kind of night and I kept it all bottled in. Rin did chat with one of my adopted big brothers who is also a CNP to ask for information and advice and that did help bring some reassurance. He basically made her swear in blood over FB chat that we would watch for certain things like jaundice (which we already had been) and that if there was a HINT of them that we’d go to the ER.

Friday, I got a call that the clinic had called Healthlinc and they had made me an appointment for Saturday morning which was…a surprise. The last I’d heard, that particular clinic was booked three weeks out. (Another local clinic for low income patients that Rin called couldn’t see me until the end of November.) Needless to say, the increased urgency added some stress. To combat that, Rin and I tried to keep me occupied and not freaking out. We also spent five hours going over the medical records I have on hand and realized that Harbin Clinic is not the best at organized record keeping, that I am missing three years of information (coincidentally the three years RIGHT after I was first diagnosed with CFS/Fibro stuff), and that there are A LOT of errors in my file as well as things missing like ER reports. Bwhee. One more thing to figure out how to fix later. Our efforts let us compile a list of the times of past diagnoses and things like that and so we at least went into the office prepared with that. I figured if I was abruptly being thrown into a new office that I was going to do so properly or at least as properly as possible.

Saturday morning I was a bit of a wreck. I’ve had horrible experiences with doctors of late which is why it’s been over a year since I’ve seen one regularly and why I’ve been without my normal meds for about that long and I just…was not prepared to face a crisis and a new office at the same time. To Healthlinc’s credit, the nurse and nurse practitioner I saw Saturday were amazing. There were no recriminations about the amount of information I brought to them (in fact they were thankful that I had it and was sharing it). There were no recriminations about not having insurance/money/jobs/not taking care of myself/it’s all in your head nonsense. There was listening. There was talking. There was a lot of concern about my liver enzyme numbers.

Alisha was very helpful. She was also pretty insistent that I try going gluten free. She said that looking at all of my symptoms and diagnoses across the board she felt it was a good path to try. She said she could order the expensive test for it or I could just eliminate gluten and see what happens. It is a concept I have pondered off and on as I’ve done more research but it is a huge level of commitment and well, I love me some gluten. So I haven’t tried it. But she was earnest in her conversation about it and suggested that it was a good place to start and so, there was one dropped bomb for the day that basically meant an entire lifestyle change.

She also was insistent that I have my labs redrawn and have an abdominal ultrasound as soon as possible. Unfortunately, that does mean that a lot more of that is going to have to be paid out of pocket than might normally because the way Healthlinc normally works is that you have an intake appointment with the financial counselor to find out how much you can pay and where on the sliding scale you fall and THEN you see doctors. I’m doing it ass backwards and they don’t have an intake appointment until later this month. But, that will be okay both by careful budgeting and some help from Mom and Dad because Mom was insistent and I stopped being a proud “I Can Do All The Things” asshole and agreed to let her help. (Sorry, Mom.) On Monday, the nurse is going to call the ultrasound folks that Healthlinc works with and set that up and I will likely have the labs drawn Monday or Tuesday depending on when the US is and we’ll go from there. I also have another appointment scheduled with the doctor at Healthlinc on Wednesday to talk about All the Things. Progress is being made and it is a bit terrifying and world changing all at the same time.

I looked at Rin at one point in the office yesterday and I said, “I think the universe is trying to teach me a giant lesson in humility.” She didn’t immediately say anything (my suspicion is that she was waiting to see where, exactly, I was going with that thought), so I went on to explain why I felt that way. I’m going to break down in a bit more detail here, though.

First, there are things that I have been putting off because of pride and anxiety. The biggest one of those has been filing for Medicaid in Indiana. A lot of it has been leftover stress/anxiety from dealing with the bureaucratic red tape I dealt with in GA. Some of it has been that the stigma regarding people who need public assistance has gotten into my head so much more than I ever realized. I fall into the category of folks who is in a situation where things like food and housing are covered, but medical expenses start to fall way the hell outside of sane budgeting. We travel. Hell, we have a lot of access to electronics largely through T’s job. We do all the things that people talk about those damn poor people not being able to afford and I stressed myself out and let the voice of public opinion make me act in a ridiculous manner. I have since rectified that point of pride. In fact, I did that Thursday night after dealing with the nurse practitioner because part of the reason she made me feel so awful was because it is something that I have mentally been kicking my own ass over for awhile. So. The thing is filed and the die is cast and we’ll see where everything falls out.

Letting myself become so proud that I acted stupidly is something that I have some regrets about but this situation with my liver going rogue has made me come to the point that all of the built up arguments like, “We’re doing okay” and “we can manage” and “I can live on ibuprofen alone! (the biggest lie of them all)” and threw them all out the door and said, “Honey, you’re up shit creek, what are you going to do about it?” So, I grabbed the paddle, beat the hell out of the last shreds of pride I was holding on to and filed the application.

Second, there are a lot of other ways that I have let pride become the boss of me in the last couple of years. I retreated inside my own shell after some things went horribly wrong with some people that I genuinely cared about. And that reaction was okay for a time because I needed the space. But instead of eventually crawling my way back out, I built up the wall that said, “I don’t need no stinkin’ people” and kept building. I reach out sometimes and I’d poke my head around the wall. For many people, it probably didn’t look that different than normal. But I kept trying to protect myself from the world because it seemed like the thing to do at the time. In the last few months, in part with the help of some awesome writers like Glennon at Momastery and Jennie at The Bloggess, I’ve been trying to unwrap myself from the “people are bad” cocoon I’ve built. It hasn’t been easy. And reaching out to other people and crawling out of that hole means remembering what it is like to feel things for other people again and as G says, the world is a brutiful place full of beauty and pain. And my heart hurts, but I’ve been trying.

Right now, I’m sitting at a junction where I can continue to keep all this shit to myself and Rin and a few other folks or I can open the door and say, “Hi, I’m sometimes a crazy asshole who needs to be reminded that she isn’t a super hero and right now I’m terrified out of my brain and if you have a kind word or a hug to spare I’d totally appreciate it even though I don’t think I deserve it all that much.” And oh how there is an internal battle in my head about which option to choose, but in finally making myself sit down and write about this crap I think I know which option will win. At least I hope so. Though I suspect that since Rin knows I’ve been writing something she’ll likely just hack into my WordPress account and post it for me if I don’t so maybe I should save her some work.

If there is anything about the current government situation that I think acts as a lesson unto my own life it is that we all need each other when shit gets weird. We all have to learn how to stand together and find some common ground even when we vehemently disagree or there will be people who will capitalize on that fact. And…I need people and I need to stop being a hermit. And for those of you who have kept poking at me and making me interact with the rest of the world whether it is via insane FB messages, random texts, or even something as simple as a word game on the Internetz, you have a lot more gratitude than I have words for. Please don’t stop.

Third, having to embrace a gluten free diet offers an opportunity for some of the health changes that I have needed to make. I have needed to become more active, but I have let the fugue of “it hurts too much” and “it’s too hard” become my rallying cry. Now, I’m taking words from Glennon again and I am trying to change my rallying cry to “we can do hard things.” In fact, I told Rin that maybe what I need her to do for the next couple of weeks is to sharpie “We can do hard things” on one wrist and “love wins” on the other because I am probably going to need the reminders. I was half kidding last night when I said it, but the more that I think about it, the more I think it is actually a really good idea. Sometimes I need the visual reminder to beat the negative words in my head.

Because the first doctor I saw mentioned that if I was having problems with my gallbladder (which is what I thought the abdominal pain could be), he suggested a low fat diet to help. Because I’d already had several days where I couldn’t eat because I was too sick, Rin started introducing things slowly back into my diet. The result has been that the two weeks that I’ve been on antibiotics have seen a somewhat revolutionary diet change for me already. She cut out pretty much all of the processed crap with the exception of saltines and toast (since for the first couple of days that was what I was keeping down). She has been giving me a lot more fruits and veggies than I normally eat. And basically she’s been a freaking rock star taking care of me and making me awesome veggie soup with a little bit of chicken in it and things like that. Seriously, her veggie soup is amazeballs and you should ask her to make it for you. What I’ve noticed is that I haven’t been craving as much of the junk that I usually do, and in fact when she and I were driving through town last week a lot of the fast food places that I look at as comfort food just sounded gross to me. Sure, there are things that I want (fried shrimp omg), but on the whole, a lot of the stuff that I haven’t been eating the last couple of weeks is stuff I didn’t really need anyway.

Those changes have also been enough to give me a small ledge to stand on as I face this new change. Because I know that I CAN do it, but being able and being willing are two entirely different things. However, as I said, the universe is teaching me a lesson in humility and has offered an opportunity for change. I can accept it and see what happens or I can keep living with my head under a rock and doing things the old way because that’s the way I’ve always done it. And thereby I get caught in my own trap because I HATEHATEHATE the rationale “but this is the way we’ve ALWAYS done it so we have to keep doing it that way” with a fiery passion. I have to accept the fact that things need to change. In the last two years, I’ve kind of let food become the source of comfort that I needed and I put on a lot of weight that my effed up joints don’t need to carry. Now, I have to relearn how to eat again and that’s going to take making some changes. Thankfully, I don’t have to do it alone. Rin has, pretty much from the get-go, been thinking about ways to make some of my favorite things without gluten and she’s come up with some pretty awesome ideas. She is most worried about being able to bake me things because that is her passion, but I reminded her that we know a lot of people who know how to deal with gluten free baking and that is helping bolster her courage, too. Things have to change and I have to be the one to make the decision to let the change happen. So, baby steps. Tomorrow, I say goodbye to gluten and it will be hard. Oh, it will be hard. But it is doable and I can do this.

If you’ve read this far, you might be wondering what I need at this point. Well, the answer to that is simple. Encouragement, for one. I am scared that my liver has decided to go rogue and well, with my health history, you never know what could be causing that. It could be something as simple my gallbladder giving up the ghost or it could be something else and I don’t do well with uncertainty. Mystery is not my favorite genre after all. 😀 So, encouragement is good. Beyond that, I am likely going to be a raging bear for the next couple of weeks because from everything I’ve heard, quitting gluten can be mood swing inducing and at the same time that I am giving up gluten I will also be detoxing from Prednisone, so encouragement not just for me but for Rin and K as well is good. I told Mom last night on the phone that nobody is going to love me this week and she said, “No, they’ll still love you, they just might not want to be around you.” You know what, fair enough. On that point, she is definitely right because gods know many of ya’ll have seen me at my awfulest and you still hang around so there is that. Also, I apologize in advance if I whine a lot on Facebook. I may whine there to avoid doing so out loud to the people who have to live with me.

Oh and finally, encourage me to write. Feel free to send me texts and emails. But I think that one way to help combat some of this stuff in my head is going to be writing it down. Logically I know this, but I have kind of screwed myself in the writing department the last few years with mixed messages of “it is helpful” vs “it is utter rubbish and who the fuck do I think I am writing anything” and I need some help dragging myself out of this hole, too. This one is a bit harder because sometimes the reminder makes me belligerent. I still need the reminders and the encouragement. Hell, at bare minimum I have a built in well of new topics to talk about because I’m sure that adapting to a gluten free lifestyle is going to make for some fascinating times for me. But knowing that and remembering to put hands to keyboard doesn’t always work. So, please, if you’re of a mind to so, drop me a note once in a while to suggest you’d like to hear what’s going on. It will help more than you realize.

We can do hard things. (The we is important to me because I know I can’t do this alone.) Love wins.

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