Tag Archives: tramadol

Holding My Head Above the Water

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It has come to my attention that I’m not happy. I want my life to be a certain way and, rather than feeling bad that it isn’t that way, it’s time to sit down and decide A) how I want my life to be, and B) how I’m going to make that happen.

How I Want My Life to Be

I want to spend most of my time writing, and I want to get paid to do so. I want to have my books published and then write more books. I want to write articles for other creatives to help them market themselves.

I want to get married and have babies, but I don’t want to have any babies until I publish at least one novel.

I want to get a grip on my mystery autoimmune disease. I’m sick of spending the day taking medication with no results. Throughout the last week, I’ve taken more Mobic, Tylenol, and Tramadol than I fear my body can handle, and the worst part is, it barely helps until all three are in my system. I’m terrified that I’m developing a stomach ulcer or something.

How I’m Going to Accomplish This

I’m going to run through Sade On the Wall and get it ready for an editor. This means that I need to write the new first chapter that’s been sitting in my head, and make a few adjustments to the chapter where Sade and her brother go to the community center. Then I’m going to find an editor who isn’t too expensive so that he or she can help me whip this manuscript into shape.

Then, when Sade On the Wall is out for query, I’m going to repeat these steps for Secondhand Mom.

In the meantime, I’m going to keep writing stories and articles, and I may even write another novel.

I’m not going to go back to school just because some people in my life — people whom I really, really love, and know mean well — think I should. I’m going to hold off until I really want to go.

I need to put myself first for a while and stop worrying about everyone else.

I can’t control everything. I can’t control my chronic pain, even though I try really hard. I can’t control my depression, even though I try really hard there, too. The lack of daylight is really not helping with my mood, so maybe it’s time to get a light box. It’s also time to start eating better: more fruits and vegetables, and more protein.

I’m also thinking about separating my more personal blog from this one. I want the focus of elizabethbarone.net to be my writing, not my aches and pains.

So, I need your advice.

  • Do you use a light box? What brand is it, and about how much did it cost? Does it help?
  • Would it be confusing if I used elizabethbarone.net to talk about writing and someotherwebsite.com to talk about my chronic pain, depression, etc? Am I annoying you with my digital indecisiveness?
  • Can you recommend any feel good foods or recipes that are healthy and would be convenient to take with me to work? (I usually only have a fifteen-minute break, so I don’t have a lot of time to heat anything up.)

Hugs are good, too. I just feel so overwhelmed. I hate to admit it, but there it is.

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!

I didn't get a treatment plan, but I do have an action plan

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I’m not getting excited about treatment or a diagnosis anymore.

On Thursday (05/12), I saw my rheumatologist. After waiting over an hour in the waiting room as per the usual, I finally got an exam room. Dr. Greco had who I’m assuming is an intern in the hospital look over my blood work, talk to me about my symptoms, and then give me an exam. She was really nice. And pretty. And thorough. I am not at all against seeing an intern. In fact, I’m kind of all for it, since they tend to have fresher eyes. After all, interns were the ones who figured out what was wrong with my godson when no one else could. So, even though I thought that I would be seeing Dr. Greco to discuss a treatment plan for RA, I treated the intern as though I were intentionally seeing a new doctor. I can’t quite remember, but I’m pretty sure her name was Dr. Patavel. I’m probably wrong, though, and I feel bad for forgetting her name.

I showed her my nails, and she said they are pitting (so clearly I suck at research), and that it can be caused by vitamin deficiency. She also said that some types of Psoriasis can cause nail pitting, skin rashes unlike what we normally see as Psoriasis, and joint pain. We also talked about my GI issues and I told her that I’d stopped taking Levsin because it made me sick.

Dr. Greco came in shortly after. He asked her what she thought of me. She ran through everything: I have no signs of anemia, I had a positive double-stranded DNA, I have symmetrical joint pain, my nails are pitting, etc, etc. She also mentioned the possibility of Psoriasis. Dr. Greco checked my pressure points for fibromyalgia again, and as usual, I didn’t have any pain where he pushed (except for in my left shoulder, but I can explain that: stress). We discussed my visit with Dr. Zlotoff again, and he asked her what she would diagnose me with. She said she didn’t know, and then Dr. Greco went into Action Plan mode.

He told me that he wants me to keep a thirty-day record of the pain, on a scale of one to ten (ten being the worst), with a list of what hurt that day. During two weeks of those thirty days, I’m not to take any Tramadol. Then, after those two weeks are over, I’m to take 25mg of Tramadol every morning, to see if it will help the pain after building up in my system. So, the record will show what my pain is like with no Tramadol, just Tylenol, and then with 25mg of Tramadol daily. I’m kind of afraid of going without my Tramadol crutch; even though I can’t take it during the day if I’m out and about, I always know that it’s there when I get home. Still, I went without it before I-forget-which-doctor prescribed it to me, so I know that it won’t kill me to go without it for two weeks.

I’m also to start some kind of exercise program, like Tai Chi. I’m thinking yoga, so that I’ll have an excuse to buy some VS yoga pants*. I’m only half serious; I know that yoga is supposed to be good for toning, when you’re like me and ellipticals and Jillian Michaels videos hurt. Dr. Greco said, “I want you to become an exercise freak this summer.” It’s better than when Dr. Lichter told me to get a gym membership and sent me on my way¹, but still. I guess it’s just hard to believe that I’m over four years into all of this, and still miles away from a diagnosis.

He also said that his cousin is a rheumatologist in Southbury, and that his cousin has a wider knowledge of pain medication. (You know. Since every medication I’ve tried either doesn’t work or causes a bunch of odd side effects in me.) He’s going to talk to his cousin to see if he can get some ideas of other meds I can try. (Yippee? Honestly, I’m kind of afraid of meds now.)

Dr. Greco said again that something is definitely brewing, and now I’m starting to understand that this is going to take more time. It might even take something drastic. Like, I might not get a diagnosis until whatever this is decides to really rear its ugly head and send me into the ER for something life-threatening, like on Mystery Diagnosis.

Here’s what I’ve realized: I want a diagnosis, not treatment. I just want to know. If somehow, out of that diagnosis I get treatment, fine, but that’s not what I’m after. (Then again, today isn’t a bad pain day, so ask me again when I’m laying in bed in agony.) I want to know what’s wrong with me, so that I can move on with my life. I hate that not having a diagnosis also limits protection of my rights. More than that, though, I hate wondering whether I really am just crazy. I know I’m not crazy, because this pain is all very real, but sometimes… sometimes, yes, I question myself. I think, Are you sure that you’re not just letting this happen? Like, creating hysterical arthritis or something? Are you just subconsciously fabricating all of this for attention? Usually, this happens when I’m feeling desperate, like when blood work comes back negative again, or when I go to a doctor’s appointment expecting a treatment plan and find myself back at square one again, instead.

I hate running into the proverbial brick wall over and over.

Brick wall

Brick wall, by zoreil

But that brick wall will never break me. I may feel like I’m cracking quite often (whether it’s health-related or not), but I’ve learned to take a day or two when that happens. During that time, I lay in bed all day and watch Grey’s Anatomy² or Batman Beyond, or play Plants VS Zombies on the DS, or read. I drop all of my problems and worries and let myself separate from it. Some people might call it hitting rock bottom, but I call it recharging. There’s no depression. Just recharging. And once I’ve recharged, the depression and anxiety I felt before feels much more manageable.

So I’m going to keep this record of my pain, and look into yoga, and hope that the diagnosis comes without me having to end up in the ER. I’m going to try to stop getting so excited every time I get blood work done, or a new symptom pops up, or my doctor mentions a treatment plan. I’m also going to try to stop questioning myself when I hit that brick wall; I may not be able to trust my body anymore, but I have to be able to trust myself. I also have to be able to trust my rheumatologist, and believe that he’s still doing everything possible to find out what’s going on.

I have started thinking about getting a second opinion. I’m kicking myself for canceling my appointment at Yale. I’m just wondering if maybe, if I see another rheumatologist, they’ll pick up on something else we’ve missed. I’m also wondering if there’s something to the theory that some autoimmune diseases are triggered by viruses. I had mono when I was seventeen, and mono is known to later trigger some autoimmune diseases, such as Rheumatoid Arthritis, Lupus, and Sjogren’s Syndrome. Mono is caused by the Epstein-Barr virus (EBV), and in some cases some people end up with chronic EBV infection… and sometimes Chronic Fatigue Syndrome. All of these diseases — RA, Lupus, Sjogren’s, and CFS — have symptoms that match my symptoms.

So I am going to follow the current action plan:

  • Keep a daily record of my pain.
  • Look into and start an exercise program.
  • Continue taking B12.
  • Take multivitamin to see if it helps the nail pitting.
  • Call Dr. Zlotoff and talk to him about alternatives to Levsin³.
  • Talk to Dr. Greco about EBV next time I see him (07/21).

That’s all I can do right now.

Image Credit: Brick wall, by zoreil

*Yes, I’m over the whole online order thing. I got over it pretty quickly after receiving a shitload of coupons for free panties and savings. I’m easy like that.

¹This was back when this all first started, probably in 2008. I couldn’t find a PerpetualSmile.net or elizawhat.com post about it, but I’m thinking it’s in one of my old LiveJournals… which I plan on importing here, a little at a time.

²I just bought Season 3! I am too addicted now to borrow them from Sandy; I have decided to collect all of the seasons on my own. It’s pathetic. But I’m totally okay with pathetic, and I won’t even deny that I am completely obsessed with this show.

³I think Levsin did help my IBS symptoms, but it made me nauseous and dizzy… which doesn’t really help me.