Tag Archives: autoimmune disease

What This Blog Is, What This Blog Isn’t

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I used to struggle with having a “point” for my blog. Okay, so I didn’t struggle with that when I was on LiveJournal or when I moved to my first domain (perpetualsmile.net), but as I started to mature as a person and as a writer, I began to wonder: Should I blog about my life? Should I just stick to the “professional” stuff? And then, a couple of weeks ago, De said to me:

I don’t advise separating your life from your writing. Aches and pains aren’t thrilling, but they are human, and humanity in a writer is never a bad thing.

It changed how I looked at my little corner of the web, and also how I looked at myself, my life, and my writing. I’ve been on this quite extraordinary journey throughout the last six months or maybe even year, and I have this awareness of myself that I’ve never had before now. It’s freeing and empowering. It’s also, however, changed this blog (among other things in my life, but that’s another post for another day).

At first, the change in this blog scared me. I wondered if any of the people I’d met through blogging would continue to read it. It terrified me that maybe they wouldn’t like the new stories I wanted to tell. I decided I want to help other creatives — writers, artists, musicians, etc — market themselves, as well as continue to tell my own stories about my life. I worried about how the two would blend… and then I started thinking about De’s words. “Aches and pains [...] are human.” That’s what really stuck with me. Aches and pains are what get us from Point A to Point B in our own personal journeys through life. We might not see it at the time, but when we look back, it’s amazing. Or at least, it is for me.

I want to share my aches and pains with you, in the hopes that my experiences will help you get through your own aches and pains. This includes my chronic illness, my depression, trial and error with digital marketing, and everything related to writing. See, these things are all a huge part of me, and I have learned that I can’t hide the ugly if I want to show the beauty.

At some point, you have to make a decision. Boundaries don’t keep other people out. They fence you in. Life is messy. That’s how we’re made. So, you can waste your life drawing lines. Or you can live your life crossing them.

–Meredith Grey, Grey’s Anatomy

My best friend has this tattooed on her back, and what I love about it most is that it can be interpreted in so many ways, and the more I grow, the more interpretations I see. This is an important lesson in writing, too; Robert Kirkman frequently tells impatient readers of The Walking Dead that the highs wouldn’t seem so high if there weren’t any lows in the story.

What This Blog Is

  • A chronicle of my journey from writer to author
  • A chronicle of my life with chronic illness
  • A chronicle of my struggle with depression
  • A chronicle of my marketing lessons learned

What This Blog Isn’t

  • A dumping ground for negativity; there is always negativity, but I will not share it just for the sake of being negative, no matter how tempting it may seem.

I share other things here, too, like book reviews and music I’m currently digging. (Speaking of, you should check out Washington. She’s a solo act from Australia, and I’m a little in love. She’s a little jazzy, a little ska, a little alternative, and her song “Holy Moses” hooked me from the first time I heard it.) My main goal here, however, is to chronicle my journey from writer to author, and to help other creatives market themselves online.

What’s the “point” of your blog? Is it just for fun? Is it for business? Is it a chronicle of something? Is it a mix?

Off My Mind: Things I am Not Going to Worry About

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Lately I’ve been worrying so much that I barely have time for anything else, in my head at least. The other day I realized that I just need to stop worrying… so I did. This is unprecedented in Liz history. The worries are still there, of course, but they no longer threaten to suck me dry. I no longer feel like I’m going to break into little pieces. I still need to purge my system, though, and get these worries off my mind.

I am not going to worry about money anymore. My paycheck every Friday isn’t that great — I work fifteen hours a week and earn minimum wage — and it may be tight every week, but I’m okay. It’ll be even less tight after next Friday, when I pay off the last bill in the stack of bills that I need to catch up on. Hell, I’m even managing to save a little bit of money every week. I’ve gotten damn good at budgeting. Clearly I am wife material.

I am not going to worry that every family member’s health problem is a death sentence anymore. Well okay, that’s probably impossible to stop doing, but I’m going to try. My aunt had her biopsy on the 21st, and the other lady in my life who needs a mammogram has yet to make an appointment, so either way it’s all out of my hands. Worrying is not going to help anything. It’s just going to make me feel sick.

I am not going to worry about my own health problems. Currently I’m in remission, meaning I have little to no symptoms. This could all change tomorrow, but I’m not going to worry about that. I’m actually feeling quite positive about this year’s New York Comic Con; last year, I hurt for days after, but this year I’m less soft because I work in retail again and I’m used to being on my feet for hours. By October 15th, I’ll be a pro. I’m not going to let my pain ruin that day for me.

I’m also not going to worry about my lack of a diagnosis. It’s got to be a good thing that they haven’t found anything, because maybe that means this will go away. Maybe it’s just some weird aftereffect of the mono I had, maybe it’s just the mono working its way out of my system all these years later. I don’t know. I caught a segment of some Mystery Diagnosis-ish show last night and the woman’s symptoms were almost to the T mine; I could have written that part of the episode. She ended up being diagnosed with Scleroderma, an autoimmune disease where the body doesn’t produce enough of the collagen protein and the body attacks its own skin cells and other tissues. It’s a rare disease marked by joint pain, fatigue, Raynaud’s Syndrome, and GI issues. It sounds pretty close to mine, and maybe it’s not mine, but once I get back on my feet and can afford another doctor’s appointment, I’m going to have Pam check my collagen levels in my next blood workup. It gives me something else to go on and something else to cross of the long list of Things That are Not Wrong with Me if the test comes back negative… but I’m not going to let it get to me.

And while we’re still on the health subject, I am so going to stop worrying about my Mirena IUD. When they first told me it could potentially poke through my uterus and cause DOOM, I didn’t worry about it. But ever since I missed my followup because I couldn’t afford the copay, I’ve been freaking out at the slightest bit of pressure in my lower abdomen. Logic tells me I would definitely know if the thing poked through my wall because I’d be in screaming pain and bleeding like a stuck pig or something, but my imagination (as we know) runs rampant and tells me that I am bleeding internally and am going to die. If you’ve ever thought I might be crazy, you now may be convinced that I am completely insane. I’m not apologizing for my imagination. It helps me write stories. :P

I am not going to worry about what I want to do for the rest of my life. I had this problem. I wanted to do everything and couldn’t pick one thing to do forever. A week ago, I realized that I don’t have to pick one thing. A career should be something you enjoy, that you want to get paid for. It shouldn’t be a life sentence. At least, not for me. I am not a “pick one thing and do it forever” kind of person. The only thing I do forever is love someone. I have many interests, all of which wax and wane. It keeps my life interesting and keeps me learning. I can already tell that I’m going to be one of those seventy-year-olds embarking on a new career, because I am always embarking on a new interest, and have already had a successful career.

Part of me wanted to be an editorial assistant, part of me wanted to be a teacher, and part of me wanted to be a surgeon. I can’t do it all at once, and I accept that. I tried to pick one thing to do forever and I couldn’t convince myself that it was okay, so when I realized that I didn’t have to choose, I felt a huge weight come off me. All I had to do was choose which one I wanted to do next. As much as I’d love to be an editorial assistant, it’s not realistic for what I want in my life right now. I’d have to go to school for another two to three years, work the retail job I have now, and then when I finished I’d have to find a job in the field… which would not be easy. I want to work as an editor for a publishing company and read people’s novels and short stories. Those jobs are very, very hard to come by, partly because of the economy, and partly because of the changing landscape of publishing. It doesn’t mean that it would be impossible. It just wouldn’t be easy.

So instead, I’ve decided to chase my other dream for now and come back to that one later: being a teacher. I’ve decided that I’d rather work as a preschool teacher because, as much as I love all kids, that age group is my favorite. And, in Connecticut, you can become a preschool teacher with either an A.S. in Early Childhood Education or your CDA certification. I’ve also heard that many preschool and Head Start programs will hire a teacher as long as they are currently working on their certification. I’ve emailed the head of the ECE department at my community college to see what my best option would be, as the certification on its own would take less time than the A.S., and I’m assuming that since I already have an A.S., I’d be just fine with the certificate.

I’d be able to start working in that field in a relatively short period of time, and then I would have a good paying job with health insurance benefits and enough income to live off of. After that, I could start pursuing my B.A. in English part-time and eventually be in that field, as well as have time to focus on my writing; most preschool teachers are part-time employed, and depending on where they teach, they also have summers off. I would also have something to fall back on if I can’t find employment as an editorial assistant. No matter how I look at it, this works for the best.

I am not going to worry about our wedding plans. Mike and I both have very different ideas of what our wedding should look like. He wants a Halloween wedding and I want a beach wedding — two very different seasons. I worried about us compromising, but I’ve decided that if we don’t, I don’t care. It doesn’t really matter to me how we get married, so long as we do get married. We’re going to talk about our wedding plans, budget, and a possible date later.

I am not going to beat myself up about my savings and worry about how soon we can get our own place. It really bothers me that I had to use the money I saved for an apartment to get through the months I was unemployed… but I’m not going to beat myself up about it anymore. I’m saving money again and moving forward. I’m considering setting up a second savings account that is only for the apartment, that way it’s out of sight and out of mind, and I won’t be tempted to tap into it next time I have a monetary emergency.

And, on a lighter note… I am not going to worry about catching up on Grey’s Anatomy anymore. I finished Episode 16 of Season 7 earlier today, DVRed the first episode of Season 8 last night, and I’ll catch up eventually. I’m not really looking forward to having to wait a whole week to see the next episode, anyway.

Also, on a completely different subject but also equally light note, I am back in my writers’ group at NVCC. I’m also sort of a team leader, the person who is there every Thursday so that we meet once a week no matter what. This also means that, every week, I have to write something. It also means that I’m taking it upon myself to ensure that, every week, we have some kind of snack. Snacks are important. I’m making the writers’ group and the Fresh Ink publication one of my priorities right now, because it helps me make writing one of my priorities. Writing and snacks are important.

What are you not worrying about, and what are you looking forward to? Leave a comment and get the bad things off your mind, and make something good your mind’s priority.

One Title Does Not Fit This Post

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I don’t really know how to say this, so I’m just going to say it: I found out yesterday that Noni’s tumor grew a little. I know that “a little” isn’t anything to freak out about, but I can’t help but think, “What the fuck? The hormones were supposed to shrink it, not let it grow.” I’m trying to stay positive and not freak out, but it’s bothering me. Her doctors are going to reevaluate the hormone treatment and see if they should try something else, or if she’s going to need surgery to have it removed like they originally planned, or what. I don’t have many more details than that. I think they’re going to do some more testing on the tumor. Honestly, I kind of went into this numb zone where I didn’t hear much else beyond “tumor grew a little,” and I’m kind of afraid to ask someone because I kind of feel like an asshole for missing most of the conversation.

Because I don’t really want to think or talk about that, I guess I’ll tell you about my second least favorite subject: My latest visit with my rheumatologist!

I saw him on on the 21st, and after waiting an hour like always, finally got into an exam room. I saw one of the nurses first. She took my blood pressure, asked me about medications, then went through a whole list of questions, like, “Do you have any joint pain? Headaches? Chest pain?” etc. Some of them were relevant, but most of them weren’t. I told her about my six-day headache, and she was kind of surprised. I forgot to tell her about my switch from oral birth control to the Mirena, so when my doctor came in I made sure to tell him about both the headache and the Mirena. He didn’t seem concerned about the headache, though. (It did, by the way, finally go away on the 23rd. I haven’t had one since, knock on wood.)

We talked about my Tramadol and how I’ve been on 25mg and how it’s radically helped my joint pain, and he seemed satisfied with that. He asked me if I’d started Tai Chi or anything like that and I told him I had planned to, but lost my job so couldn’t afford it. We also talked about my UTI symptoms. After telling me I needed to get a urinalysis done that day and get blood work done in two to three months, he asked if I’d followed up with my PA-C at my regular doctor’s. I hadn’t, and hadn’t even thought about it, so he said I should follow up with her… and also with Dr. Lichter.

Dr. Lichter is a Physical Medicine and Rehabilitation specialist. He’s the one who did several nerve conduction tests on me, all of which came back fine, and then told me to get a gym membership and sent me on my way. I didn’t have a problem with him until then. I have a huge problem with doctors dismissing health problems when they can’t quickly diagnose them. He might be a fantastic doctor, but he obviously didn’t know what to do with me and didn’t think he needed to try anything else. I know I’m a mystery. I’ve had countless doctors tell me that. My blood work is wily. Honestly, if I were a doctor, I might have reason to think I was a drug addict just looking for a prescription, or at the very least, a hypochondriac. Unfortunately, before my daily dose of Tramadol, my joint pain was very real and definitely not just a twinge here and there that I freaked out over. This shit kept me up at night on many occasions that I’d rather not remember. This shit interfered with my life on many levels. If I’m a hypochondriac, I’m a really good one.

Dr. Greco wrote my PA-C’s office and Dr. Lichter’s office on the “copy to” part of the blood work order, and told me he’d see me in six months, and to follow up with Pam (PA-C) and Dr. Lichter in the meantime. I know I don’t have to see Dr. Lichter. I’d definitely rather not waste the $40 copay. Hell, I can’t even afford any of my copays right now, so I’d really rather not waste it on a doctor I don’t like and don’t want to see. I’m going to make an appointment with Pam and see what she thinks. Honestly, I’m not sure what the next step is. My symptoms are, for the most part, finally being managed. I could just walk away and be content with taking several medications — Tramadol, Miralax, a slew of vitamins — for the rest of my life. At the same time, though, I still really just want to know what the hell caused all of this. It’s kind of hard to justify more sleuthing, though, when my symptoms are being managed.

I did my urinalysis that same day, and the next day got a call from Dr. Greco’s office. I have a bladder infection, and am on Cipro. I can’t even think of how many times I’ve had bladder infection or UTI symptoms, had my urine tested, and came back with nothing. I had it so bad one time, I was screaming and crying. (I think I may have even gone to the ER, but it was a long time ago so I’m not positive.) I’m shocked that something actually showed up this time. I’ve been feeling like shit for a couple months now.

Cipro sucks. You can’t take it within so many hours of magnesium, calcium, or milk product, or with any of those things, so I am having a hard time remembering to take it. I take all of my pills in the morning after breakfast. I can’t take Cipro then because I usually have some kind of milk product; if I don’t have cereal for breakfast, I usually drink coffee with cream. It’s definitely annoying.

I’m also annoyed because I had a urinalyses when I had my annual at my gynecologist’s, and apparently the bladder infection didn’t show up. My symptoms then were worse than they are now. Speaking of my gynecologist, I missed my appointment today with her to check my Mirena. I completely forgot until I started writing this. The worst part is, their reminder machine called me yesterday, and I have it written down in my planner. I have completely lost track of my days.

Not having a job is killing me. I know I keep whining about this, but I’ve never had such a hard time finding one. At first, when I lost my job in May, I thought, Whoo, vacation! Now I am bored, a couch potato, have no life, and have no money. The bills are piling up. Most of them are medical bills, but I have to give my mom money for my car insurance next month, and then in October have to pay at least $50 toward my student loan. And if the school ever sends me my acceptance letter, I’ll need gas to get back and forth from New Haven. I’m only planning on taking one class (unless something changes drastically, like I get a work study at the school), but still.

I feel like I’ve been going through one of those really long rough patches, and I’m almost at the part where I’m going to get through it. It’s not just work related. It’s my health, family — everything. I feel like I’m on the edge, that I just have to keep swimming. It’s been a long, long rough patch, let me tell you. I cannot wait to get to the other side.

How did you get through a long rough patch?

Tramadol is definitely my new best friend

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My Martha Sim is VERY knocked up, and definitely not on Tramadol, though her facial expression is pretty funny!

My Martha Sim is VERY knocked up, and definitely not on Tramadol, though her facial expression is pretty funny!

How could I have thought I didn’t want to blog anymore? I still have so much to say.

It has been over a month since I started taking 25mg of Tramadol every day, according to my rheumatologist’s action plan. I think it’s safe to say that it’s working. My pain level is way down. I still have my bad days, but usually in the morning before I take my dose. I also still get little twinges or, like my left wrist today, something will bother me all day, but it is never enough to stop me from doing anything. Also, 1,000mg of Tylenol usually knocks it out. I bet even just 500mg would. (I haven’t taken any today for my wrist. I’m lazy like that.)

I’m thrilled. It doesn’t help with my other symptoms, but most of them can be managed somehow.

Speaking of other symptoms, my GI issues have changed. It used to go a little something like normal bowel movement one day, constipation or very hard and painful BM with little product the next, and then the next day very soft with a lot of product. For the last month or so, I’ve been going at least a week — sometimes two — without going at all. When I do, it’s either very hard and very little product (like before), or very soft and a lot of product (like before). I am going, though, so I guess it’s not a huge deal. At first, I was pretty freaked out. I thought I was dying or something. Now, I’m a lot less panicky about it and have been proactive on making it better. I’ve been taking a half dose of Miralax every day, and have been trying to eat a lot of fruit throughout the day (a cup or more). Yesterday, I had nothing but fruit for breakfast and for lunch, and today I had nothing but fruit for breakfast. (Which reminds me… I need to go take a dose of Miralax!)

I am pretty sure this is all Tramadol’s doing, since it started around the same time I started taking the 25mg every day. I’m seeing Dr. Greco in a couple of weeks or so, and will definitely be asking him, but as long as the Miralax and fruit help and I’m still going rather than not going, I’m not going to freak out again.

I’ve also been thinking a lot about my lack of a diagnosis. It makes me fucking crazy that I don’t know what’s going on. It makes me fucking crazy that this all might be a post-effect of having mono when I was seventeen. It makes me fucking crazy that not having a diagnosis for my very real illness severely limits my rights in the workplace. If I had a diagnosis, none of the things That Horrible Place got away with would have happened. Or, at the very least, I could have had a lawyer get me a pretty penny. Right now, I’m looking for a part-time job, but in the future I definitely want something full-time, and knowing that without a diagnosis, working full-time leaves me no wiggle room whatsoever for doctor’s appointments… It makes me worryworryworry.

What I was getting to before that whole worryworryworry tangent is that I’m going to ask Dr. Greco about post-effects of mono, and see if we can start looking into that route. Depending on how this next appointment goes, I’m also going to start looking for a second opinion. While I truly feel like Dr. Greco does genuinely care, I don’t feel like we’ve made any progress in the last year. I’m still kicking myself for not rescheduling my appointment at Yale and just canceling it.

Mike’s cousin Jannelle works in a rheumatologist’s office in Rhode Island, and said she might be able to squeeze me in, so I can get a second opinion. We were talking about Mike and I visiting in August and staying for the weekend, so we’d have to decide and then let her know. It might be worth it, though.

I’m so over this mystery illness. I just want it to go away. I’m hoping that maybe it will; maybe it’s some weird post-mono hiccup and it’ll just kick rocks after torturing me for a while.

RANDOM FUN FACT:
G4 has just informed me that someone is busted for marijuana possession every thirty-five seconds, or something like that. These are the things I hear on the TV while blogging. If that’s true, our country’s police are spending way too much time on petty crime. They should be putting that manpower into the dangerous drag racing on South Main! Besides, who doesn’t like a stoner? Everyone should have a requisite pothead friend. They’re entertaining, and insightful.

I'm getting the hell out of here!

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Squirt is clearly only tolerating my annoying urge to take pictures together.

Squirt is clearly only tolerating my annoying urge to take pictures together.

Tomorrow I’m getting out of the city and into the country and fresh air for three beautiful days. I’m ecstatic. I’m still unemployed, and all of the stress surrounding the whole situation has been making me yearn to just get out. As long as Noni still feels up to it after her chemo today, we’re leaving for the lake tomorrow morning, joining up with Aunt Wendy, going to Aunt Wendy’s graduation tomorrow night, and then coming home sometime Friday. I get three days all alone with my grandmother and aunt — something that will probably never happen again.

I haven’t yet decided whether I’m bringing my laptop to do some writing, but I’m bringing two of the books on my summer reading list. I really want to leave my laptop behind, but I haven’t done any writing in a few days, so I might bring it and my Sade On the Wall first draft and notes. I don’t know. There’s something appealing about getting away from my laptop for three days… and there’s also something appealing about using those three days to get started on that editing I’ve been meaning to do (and procrastinating).

So yeah, as long as Noni still feels up to it in the morning, we’re heading off! Her chemo went well today, though. They started her on a different chemo, since she was reacting badly to the other one. The first time she had her treatment, she fainted and got pretty banged up. She also had a lot of joint pain. The second time, she had joint pain again, I think, so her oncologist decided to try a different medication. This one was a shot instead of an IV drip like the other one, and she did well on it today. All of her blood work came back perfect, too, and she and the oncologist even think the tumor might be shrinking.

I do feel kind of bad that I’m leaving Mike for three days, because not only is he getting a root canal on Thursday, but he has never spent that much time with my family without me around. I hope it won’t be too awkward for him. I mean, I know he’s known them all for about five years and has been living here for almost a year, but I’m sure it’ll be a little different, at least. It would be for me. Then again, the only thing he’s said about the whole thing is that he wishes I was going to be around after he gets the root canal, for comfort purposes. He’ll be fine, of course, but I wouldn’t be me if a small part of me didn’t worry a little.

She didn't think this was funny.

She didn't think this was funny.

Aside from going away and being unable to find a job even though I’ve applied to several places, I started taking 25mg of Tramadol every day on 06/02 — almost two weeks ago — and since then, my pain has decreased to only a small twinge here or there. Most days, I’ve had no pain at all. It’s hard to tell whether this is the medication, or just a period of remission. Either way, I’m enjoying it. If, by the time I see my rheumatologist again in July, I’m still not having that much pain, I’m going to just assume it’s the medication. And then I’ll have to celebrate, because holy shit! This low dose of Tramadol doesn’t make me feel like I just smoked a bunch of pot! Of course, it’s not treating that annoying fatigue that hits me like an eighteen wheeler sometimes, but I can deal with that if I’m not also in pain.

She hates me.

She hates me.

I’ve also been doing a lot of stuff for Freaking Bookworm, partially to keep busy but mostly because I love it. I created a book review bloggers directory inspired by the book review vloggers directory that my book blogging buddy Liz created. I also wrote an article on why it’s a good thing that teens read YA, which got quite a few tweets and Facebook shares. (When I say “quite a few,” I mean it’s quite a few for my little book review blog. :D ) I also read and reviewed Witch Doctor #0 and Beat, and created a summer reading list. And, even though I am not ready to share this over on Freaking Bookworm, I landed my first interview with an author, and got accepted to write book reviews for Blog Critics, the sister site to Technorati (which is like Google to the blogosphere). I have a lot more reviews coming, but this is what I’ve been working on lately. So, even though I lost my Amazon store, things are still going really well, and I’m having a lot of fun with this. It would be the best job in the world if I could find a way to make a living off of it. I will, someday.

"Oh stupid human, are you done yet?"

"Oh stupid human, are you done yet?"

In unrelated news, I’m thinking about giving up personal blogging and focusing completely on book blogging. (I also have plans for another focused blog, as soon as I get back on my feet and can afford to spend the usually inexpensive $8.95 for a domain name. In the meantime, I’m setting up a WordPress.com blog to make sure I’m committed to the topic.) As much as I enjoy blogging, I just don’t see the point in publicly sharing my personal life and problems anymore. It used to be a way for me to vent, but I’m just starting to think of it as immature; I look back on many of my old posts and think, Why did I need to share that? I don’t see anything wrong with personal blogging in general, but I think I’m growing out of it. Don’t worry, though — you’ll never see me stop blogging! (Unless I die. But we’re not going to think about that. I like being alive.)

What’s new with you? I just caught up on blogs, but I still wanna know. Leave me a comment and catch me up!