Archive for October, 2013


[This entry is transcribed from my handwritten journal. As a general warning, I am even more scattered and occasionally more circular when I write by hand than I am when I type. This entry is quite long and honestly, it could possible be two entries. I might come back and edit it that way later, but right now I am just trying to get it all typed up so that I don’t keep procrastinating doing so. It was written at about 4:30 am on 22 October 2013.]

 

Given all the recent changes and goings-on, it seems only fitting to (finally) starting using this new journal. [My Thor journal that Rin bought me. ^_^] Granted, I should be asleep. It’s 4:30 in the morning and I have to be up at 8 to get ready for my first appointment with the therapist at Healthlinc. I had (somewhat amazingly) managed to forget about it until yesterday afternoon. I managed to stay fairly distracted (largely by ghost hunting in the Sims Free Play) most of the evening, but these types of things always have a way of creeping up on me when I lay down no matter how tired I am. I read for awhile, a silly romance novel (The Inconvenient Duchess), that at least managed to be distracting until I finished it. Then, of course, it was almost 4:30 and I was clearly still awake. I slipped out of bed to see if Rin was possibly still awake, but it seems I’m the only one awake at this point. On one hand, that’s good, because she was exhausted and needed sleep. On the other, it meant I was left alone with my own brain which isn’t always my favorite state of affairs. Instead of starting a second book, I decided that perhaps I should take my own advice and face off with myself. So now I’m scribbling furiously in an effort to keep up with my own mental babbling by the booklight in my Kindle cover in an attempt to not disturb anyone else. It seems both slightly poetic and maybe silly since I could just go sit on the couch. But whatever. Here I am.

Yesterday was frustrating. There were some communication issues that threatened to turn into a huge fight. I suppose, since I’m peering into my own brain, some of those issues stemmed from my own insecurities. The largest culprit yesterday was “not wanting to be a burden” coupled with a bit of expectation of a certain thing without having made those needs known. On the face of it, it was all fairly minor, and I just was frustrated and irritated. Beneath it, I felt both angry with myself for feeling so needy and frustrated that she didn’t read my mind. There were things both of us could have done better and hopefully in the future we will; however, I try not to talk too much about specific disagreements online (yes, I was handwriting this with the knowledge that it would eventually make it online) because it isn’t everyone’s business. With that in mind, I do think I need to examine some of my own reactions.

When I realized I was both upset and becoming frustrated, I should have reached out and let her know. I stopped myself both because I wanted her to somehow realize I needed her and also because I didn’t want to bother her for anxiety reasons again. Right now, this seems plain as can be, but it wasn’t so clear then. I’m getting better at recognizing anxiety and stress for what they are, but it is still a work in progress. I missed some of the mental hints and instead let myself get a little broody. By the time I did reach out, I was more than a little cranky. When she got home, while I tried to talk to her about why I was frustrated calmly, I suspect more of the other crept in than I wanted to admit at the time. I didn’t have the worst possible reaction, but in hindsight, I realize I could have chosen if not a better way to handle it, then a better time to handle it. Trying to discuss something only a few minutes after someone gets home rarely goes well. It just sort of came out when she asked if I was okay. So, hopefully next time, I’ll at least manage better timing. Things did settle back down and she worked on making dinner. She was trying something new with veggie soup and it ended up taking longer than she was expecting. That meant she spent most of the evening in the kitchen…which to be honest was unexpected on my part and also a bit frustrating. I finally realized I was just playing games for something to do and maybe reading for a bit and trying to sleep was a better course of action. I went to tell her and she got upset with me. I’m still a little confused as to why. I know part of it was because we didn’t have any of our usual evening downtime, but she had been working in the kitchen and I had no clue she could have stopped for a bit. While we were discussing it, she expressed some frustration that food didn’t seem to be a “making me feel better” thing since I went GF. I thought about it for a minute and realized that on some level, I had been working to make that separation in my head since I was already making large changes. Most of the weight I’ve put on in the last 2 years has been from stress eating, it that is really not healthy physically or mentally. We talked a little more, but I wasn’t managing to put my thoughts into words. I suspect this was a part of what was keeping me awake because cooking is something she does to make people feel good. She likes when her food makes people happy and when she finds things they love. With that in mind, and me realizing the mental changes I was unconsciously making, there was a bit of a disconnect and I could tell she was upset but couldn’t assuage that upset.

First, the obvious. You have no idea how much I love when you cook for me, even if it seems basic and easy. Cooking comes easily for you whereas for me, it’s a struggle. I don’t enjoy it, so when I do cook, it’s a necessity thing not a because I want to thing. You’ve introduced me to more foods than I can count, and on your watch, I’ve come to love asparagus, zucchini, parsnips, and even new cheeses, all because you take the time to make them. When you bring home asparagus it is sometimes more exciting to me than chocolate, and if anyone had ever hinted I’d write a sentence like that, I’d tell them they were crazy. Over the last few weeks, things have been stressful and I was having to watch what I ate even before I went GF because of my gallbladder, so you’ve had a challenge on your hands. The veggie soups you’ve been making have been getting me through a lot of the days where I felt like there was a way between my body, my brain, and food. I keep waiting for you to groan and beg me not to ask for it again because you and K are tired of it, but that hasn’t happened yet. So, even though it was taking awhile and wasn’t done when you wanted, I was still excited for soup. I’ve also been tired, out of sorts, and stressed, so it likely didn’t show as much. It hadn’t crossed my mind that there would be tasty soup when we got home from the doctor tomorrow because my brain keeps getting stuck somewhere around the doctor’s office. When you explained that after I admonished you for doing too much when you were tired and in pain, I both felt bad and felt all floaty hearted at the same time. So, see, your food is a comfort thing and a happy making thing even as I try to divorce some of the food = comfort pathways. It really is two separate things. I’m trying to stop the pathway that says, “Food will make you less stressed and will make things better” because it is not true. It might -temporarily- make things better but it won’t fix things and in the long run it makes things worse. In some ways, this is already and will continue to make me love the things you make even more because it is tasty and healthier than most of the junk I was craving before. I know some of the GF things have you a bit scared or maybe nervous is a better word because it is new territory for you and there’s more trial and error involved; however, I gleefully look forward to being your guinea pig because I know you’ll make awesome things and then all of our friends will be jealous they can’t steal you.

So, while I’m working on my mental relationship with food, it won’t diminish the love and comfort I receive from what you make for me because the two aren’t wholly connected. And if more of what I ask for you to make is mega-veggie soup instead of cookies or a cake, that won’t entirely be a bad thing. Your food makes me happy, love, and not in the dysfunctional “food will solve everything” way but in the “Holy shit this woman cares so much about me she spends six hours in the kitchen cooking for me and that is both mind-boggling and amazing” way. I hope that eases your worry better than I was managing last night.

There’s one nagging issue down, so what are the others? Well that is a bit more complicated to sort, but I know it revolves around the appointment that is in *looks at clock* four hours. *sigh* Some of it is general fear of an unknown. I’m glad I met Tom at my other appointment, but it was brief and I don’t really know what to expect. I’ve not done the counselor thing since college and while I know it can be a good thing, I’ve not had it on my to-do list. See, I have a lot of trust issues both with counselors and in general. I don’t just open up to anyone these days (doubly true after the last couple of years), so the idea of having to is daunting, almost too daunting.

The reason I’m going is because my need for my ADD meds is stronger than my fear of the counselor. Of course, I have to figure out how to communicate that without coming across as drug-seeking (in the negative way of “person who is addicted,” etc.). The honest truth is that I’ve been out of them for almost a year and I’d really like to use my brain more productively again. I miss the way [med name] makes me better able to handle my thoughts and makes me more productive. I like how it makes me better able to handle the fatigue and mental fog that my chronic illness causes. I miss the organization I used to be able to apply to my thoughts and my personal chaos field. The reality is that not only was I more productive and easier to talk to on my meds, but I dealt with less anxiety, too. To some, that might seem odd since ADD meds can cause anxiety for some folks, but for me, it helps break up some of the anxiety loops I get stuck in, and for the times it doesn’t break up those loops, it helps me be better able to focus on my what I’m doing to distract myself from the anxiety.

I’ve learned how to knit while not on my meds (which has not always been easy), and I’ve gotten pretty good for a beginner. I’m proud of that fact. I also wonder how much better I would be if I could keep a pattern in my head for more than five minutes at a time. I combat that right now by writing out every stitch in every row instead of using repeats like patterns do, and it works, but it is a bit clunky. I’d like to see how I manage with my meds, in part because I think I could eventually make some extra money by making items to sell. I’m not thinking a huge enterprise, but I do think there are things I could make that people might want to buy.

I also need to start writing more. I’m managing a bit more than I was, but I also know that it was basically my ADD meds that got me through college. I’m slowly being talked into NaNoWriMo, and I can only imagine how much easier it would be with better focus. I also know if I can get back in the habit of writing, and I can build my confidence up, I should be able to start submitting things for publishing by the end of the year. Some of that will come from continuing the path of making me a better me, but I know for a fact from past history that this goal would be better reached with ADD meds.

I need to be able to articulate all of this in a couple of hours. I also need to be able to articulate how much I do not want to be on SSRIs or their kin. Those don’t make a better me – they make a zombie me. They also affect my writing. That was part of the reason I stopped taking them in college after the “circumstances that caused me to need meds weren’t changing and the band-aid they provided was making things worse not better every time I plateaued and had to increase my dose again” reason. It was becoming almost impossible to write anything let alone 2-3 academic papers a week. Trying another one of those because it might help with pain isn’t worth the risks to me, especially not since I am finally starting to work myself past some of the self-imposed writer’s blocks I put on myself. I need to be able to write and I can’t afford to lose that.

Besides that, as frustrating as anxiety can be and as frustrating as fluctuating emotions can be, I FAR prefer that to feeling nothing when I took those meds. In the past, I needed that numbing effect to help me deal with my life at the time. For the place I am at now, especially given how hard I have been working on creating better habits for dealing with anxiety and depression without letting them rule my thoughts, going back on those meds would be so counter-productive. I haven’t worked this hard on myself to lose that effort to things that numb me and leave me feeling less like myself.

When I first was diagnosed with fibro and CFS, it seemed like every doctor wanted to put me on an SSRI. I flat refused because it had only been a few months since I finally stopped feeling the lost/numbing effects of the last one I’d been on. I talked to one of my old family doctors about it at the time and explained my logic behind my refusal. He noted that (at least at the time) they had a 33% success rate for fibro, and given the reasons I had, he didn’t think it was the path for me. After that, every time I’ve seen a new doctor and they see I have depression in my health history, it is one of the first things they suggest. I had one rheumatologist examine me who had made her mind up before I ever walked in the door that I just needed an SSRI and I’d be fine. She ignored things I presented with like my purple fingers – a marker of Reynaud’s – and she kept ignoring how much pain her “simple” exam was causing my muscles and joints and noted that “everything was fine”. There’s not a single note of ANY of my distress upon her exam but a lot of notes of how I refused both an SSRI and Lyrica. The first I’ve already explained. The second was because that wasn’t terribly long after I’d had an allergic reaction to Gabitril which is in a similar family. Basically, because I had a history of depression in high school and early college, that was clearly my problem and I wasn’t worth her time.

Given how I feel about SSRIs and their ilk (and how poorly I did on tricyclics when I tried those at the beginning of this crazy ride of chronic illness), I don’t see them as the best option for me. In light of new research into fibro that suggests the illness comes from nerve problems in the hands and feet, I feel even more strongly against them. What I am willing to look at is something like Neurontin. I was prescribed it before but I didn’t take it because of being leery after Gabitril; however, now I’m willing to try again with medicine testing because it has been several years and my body seems to enjoy changing how it reacts to things from time to time. I might even be willing to try Lyrica, though I would rather it not be the first line of testing.

I feel a bit better now that I managed to sort some of this out. I tried a couple of times yesterday to no avail. Apparently a lack of sleep and a hastily ticking countdown to the appointment were good motivators. Every now and then, I wish my brain would cooperate a bit more normally, but then I remember that normal is only a setting on the washing machine; instead of wishing for something different, right now I’m just going to be grateful I got so much written down.

Of course, my alarm is going to go off in less than two hours and I might be a bit cranky, but I will strive to keep the sense of tired calm I have right now. The question is, do I try to take an hour and a half nap or do I just go curl up with RIn and read until it’s time to get ready? Also, do I let the therapist read the second half of this entry or do I just stick to trying to talk it out? Blerg. Not sure.

We can do hard things. Love wins. 

I’m having trouble sleeping tonight. Part of it has to do with neighbors who keep making noise at ridiculous hours of the night which is making me want to go outside in my fleece penguin pajama pants and yell. Loudly. Alas, that would make me as much of an ass as they are being and would not really solve anything. I suspect part of it is that stress is kind of making me more tense than I want to be. I keep trying to breathe my way through it all and not let worry be the boss of me, but until Wednesday, I am kind of in a holding pattern in the health department and that is always stressful. I am not the most patient person, (shocking, I know) so waiting for a nebulous thing isn’t always something I am good at. There are still too many potentials and so, I fret despite my best efforts not to. Fretting aside, here’s a week in recap.

Goodbye Gluten
On the whole though, the last week has gone fairly smoothly. Adapting to being gluten free has had some stressful moments, but it has been doable without a lot of extra trouble. The biggest thing is remembering to read all the labels and trying to keep all of the sneaky gluten words in my head. Overall, it has been going pretty well though. Aside from adapting things that Rin already makes, we have tried a few different prepackaged things, too, because it just isn’t feasible for her to try to cook from scratch every night right now. She and I wandered around Whole Foods one night checking out all of their offerings. They have a pretty wide selection, though a lot of it is pricey (which we already knew). We did pick up a few things that were on sale including two types of Udi’s GF pizzas. The first one we tried was the four cheese and it was actually surprisingly good. The second was the Mediterranean one and it was less good. There were a few other things we picked up but I haven’t tried them all yet.

Saturday, Rin and K went out to the farmer’s market and the thrift stores in part to look for clothes for the ever-growing munchkin. Having started the Great K Try-On, we’ve realized she has more gaps this year than she has the last couple of years, so we are getting a head start on looking for some of the things she needs before we get to the point that she really needs them. While they were out, Rin picked up a couple of Udi’s GF chocolate muffins. They looked awesome, but for some bizarre reason, they flavored them with lemon extract and lemon zest and it just did not work for me at all. I like lemons, but I typically do not like them in baked goods. Rin does like lemons, but for her, the taste didn’t mesh with the dark chocolate of the muffins. K is going to try it in the morning. We figure that she will love it because she loves lemons and dark chocolate so it seems like it might be perfect for her.

They also managed to get to Rabbit Moon’s booth at the Farmer’s market and bought macaroons because they are also GF and super tasty. Also, since she uses natural things like fruits and veggies to dye the shells, they are not insanely bright colors chock full of dye. Seriously, if you’re local and you get a chance to try her macaroons, you should. They are amazing and I love them and I am so glad I can still eat them!

Tonight for dinner, Rin decided that tomato soup and grilled cheese sandwiches sounded tasty. Now, I have only recently become a fan of grilled cheese sandwiches and that is largely due to the cheese shop in town. Rin kind of dragged me there under protest, but it has become a place I like to go. The owners are as nice as can be and they’ll let you try samples of pretty much everything in the shop. I’m not a huge cheese fan unlike my girls, but I am slowly finding some that I really like. Last weekend, they had a blend of three cheeses on the sandwiches that was seriously one if the best things I’ve had to eat in awhile. It just flat worked for me. As a treat, Rin picked up some of all three earlier this week which was super sweet of her. Tonight, she and K ran to the library and then stopped at the grocery store to get a few things. She picked up Udi’s GF white bread for my sandwich and found a GF tomato soup that was super tasty. Yo have to understand that tomato soup is something I am pretty picky about. I love Campbell’s tomato soup which is alas not GF. I don’t know what brand she picked up, but it was really, really good. I was also pretty pleased with the bread. I amused K because I said, “It looks like bread and it smells like bread…” She giggled and said, “But does it taste like bread?” I grinned and tried it and said, “Yes, yes it does!”

I’m sure there will be trials ahead, after all, eating out is where things will be really interesting, but so far, this GF trial is going pretty well.

Knitting Projects
On FB this week, I talked about learning to increase and decrease. The first project was just me playing with a shape to practice the techniques. I made a slightly off kilter hexagon (that I mistakenly called an octagon because I do that and Rin giggled at me :p) that wasn’t great to look at, but it did successfully show the techniques. After that, I found a pattern for heart shaped washcloths and started working on that. I will post a link to the pattern later but it is on the laptop and I am on the tablet. I will also eventually post a picture but the washcloth was conscripted into use fairly quickly and no one wants a picture of a wet washcloth, right? I am pretty proud of it to be honest. I learned several new things included ssk (slip slip knit) and k2tog (knit 2 together) and I also successfully used a different colored piece of yarn as a stitch holder (including taking those stitches off the needles and then getting them back on without dropping any). It probably seems a small thing to people who have been knitting for awhile, but for me it was pretty dadgum huge and I a quite proud. This week, I am going to work on more hats and hopefully get started on a few more $winterholiday gifts once I get some measurements that I need. I was skeptical of this hobby at first, but it is quickly becoming one of my favorite things to do and it actually can be pretty relaxing.

Reading
I have been reading the 500 Kingdoms series by Mercedes Lackey this week thanks to a generous gift from a friend. I know a lot of folks are not as fond of these as they are of her other works, but I can be a sucker for a “happily ever after” story and I love how Misty handles the fairy tales. Prior to this week I had only read the first two, but I finished the last one tonight and I enjoyed all of them. My favorite was the fourth one though. It is The Sleeping Beauty and it was very entertaining. There was a bit more humor in that one and the way the tale is out together is pretty fascinating. She combined three different tales to make that one and to me it worked pretty well. Reading the series has provided a much needed bit of distraction and happy this week and I just love how the whole series is put together.

The premise behind it is that the 500 Kingdoms are ruled by The Tradition. The Tradition likes to turn stories into real life and can be a force to be reckoned with. At the helm of guiding the Tradition are the Fairy Godmothers whose job is to help guide stories and in a lot of cases to try to avoid some of the worst endings. That doesn’t mean that everything is bliss though. After all, a kingdom that is too perfect is an even larger target for a terrible Traditional tale than a kingdom that has some ups and downs. Interwoven with the Godmothers are Champions, Witches, Wizards, and a cast of characters straight out of fairy tales. While some of the stories can be predictable, that doesn’t take away from how you get to the happily ever after and for me, that is one of the most fun parts. They may not be everyone’s cup of team but they pretty much hit me in the happy place sweet spot. Fairy tales, romance, adventure, dragons (including Bookwyrm’s), and magic definitely fall into my “happy place” of reading. I recommend them much as I recommend anything else that Misty writes.

Of course now I am not sure what to start next though there are a ton of books waiting to be read on my Kindle, so who knows.

I think that about wraps it up for me tonight. I am getting more tired and thus I am having to correct more typos so it is probably time to give this up until next time. I hope you’ve enjoyed my late night ramblings and I hope I fixed all of the typos.

Ultrasound Day

Being up this early is never one of my favorite things. I would love to say that I am handling this with a ton of grace and aplomb…and I the outside it even kind of looks like I am. On the inside though, I am tired, hungry, thirsty, and kind of freaked out. I mean, it is just an abdominal ultrasound! It will mostly likely be fine. It just is completely filled with the unknown and Possibilities and it is freaking me right out. Part of me is tempted to just go in my pajamas but then I remember that I am going to the hospital and when I get home I’d have to take off my fuzzy warm Jammies because they would then be Dirty. (While hospitals are generally clean, they are kind of filled with germs and I do get sick pretty easily so clothes worn at the hospital tend to be considered dirty just for safety’s sake.) so, I am going to stop freaking myself out and go put on the clothes waiting for me and let Rin drive me to the hospital and try not to be a spaz.

Hopefully, in a couple of hours I’ll be home again and I can crawl back into bed for a nap….after I have some water because, seriously, I’ve been thirsty since about half an hour after I had to stop having water and that is annoying.

We can do hard things. Today is definitely counting as a hard thing.

 

Edited to add post ultrasound: (Originally posted on FB, but then I decided to add it here, too.) You know…that was somewhat anti-climactic. We pretty much walked into the hospital, registered, waited five minutes, and then went into the ultrasound room. The ultrasound itself was mostly painless except for the very last part and even that was mostly just “uncomfortable” as opposed to painful. In theory, the doctor’s office should have the results Monday, so…now it is a waiting thing. Now I’m going to have some breakfast so I can take some medicine and then I am going to take a nap lest my tired, cranky self turn into the raging bitch everyone wants to smack. >_>

So It Begins

Today was actually a relatively easy day. I’m actually fairly proud of myself because I managed to make a couple of phone calls that needed making and I ran a couple of errands on my own. It’s been awhile since I’ve been able to do that. Rin wasn’t feeling well and unfortunately, we had to use tonight’s dinner plan last night, so she was at a loss as to what to do. I went to the library to pick up a couple of books that she had on hold and then ran to Kroger to find myself something for dinner and a few other items to get through the next couple of days leaving her open to order pizza for everyone else.

I was actually quite pleased to find that there was a GF version of an Annie’s burrito that we had tried this summer and liked quite a bit. I picked up one of those and a few other odds and ends. Kroger’s healthy life generic brand had several things on sale so I picked up a couple of types of crackers and a box of waffles to try. I don’t have high hopes for the waffles, but I figured that trying them on sale is better than nothing. I also grabbed a couple of boxes of the Kroger brand chex cereal that are also GF so that there was an easier breakfast option. Basically, I just grabbed a few small things to have on hand to give Rin and I time for more menu planning and shopping later.

After I got home, Rin and I went for a walk and talked for a bit. We added Miss Ma’am in on the last couple of loops around our circle key and chatted with her about some of the schoolwork she’s been doing. About the time we were heading home, the pizza guy arrived so it made a good stopping point. I had cauliflower and my burrito while they had pizza and I was okay with that. The GF version of the burrito was a little different than the non-GF but it was still damn tasty!

Tomorrow will be the “go deal with some medical crap” day. I have to go get blood drawn and then we’re going to head over to the hospital to try to start the paperwork for financial assistance to avoid having to try to do that Friday morning when my ultrasound is scheduled. I have to be at the hospital by 7:15 that morning and I’m going to just make a guess and say that I won’t feel like dealing with paperwork that early. Just a guess. 😉

Now, Rin and I are watching a movie called Swashbuckler which is pretty cheesy and entertaining. We started watching it on recommendation of our friend Greg and it is proving to be distracting and goofy, so that’s fun. It’s on Netflix if you want to check it out. I’ve been amused by some of the cameos of folks like Beau Bridges and Anjelica Houston. James Earl Jones and Robert Shaw play the two lead pirates. It’s fun so far and if you like campy pirate movies, you should totally check this one out!

That’s about all for today. I successfully made it through the day without gluten! Huzzah! Let’s see what tomorrow brings.

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.