Category: Health

Itchy.

So, it turns out that I’m allergic to Zest soap. Something I’ve used on and off for years. I got home Friday, took a hot bath and then a shower, and an hour later my entire body was covered with itchy red splotches. We went to a 24-hour grocery store (a surprising rarity in the Halifax area – everything closes absurdly early here!) and tried to get some Benadryl, but because it was 10pm, it was all locked up. I grabbed some off-brand allergy control pills and some Aveeno body wash and new shampoo (just in case it was the shampoo I used in the shower), and went home to wash all of the traces of the soap off of myself.

So far, it seems to keep coming back, but not as badly as that first night. The first night, one of my ears swelled up like crazy and was burning hot, and I felt like I was covered in fire ants. Now it’s an (admittedly intense) itch on my wrists, forearms, backs of my hands, chest, lower back, knees, and shins. I joked to Mark that I looked like the kind of cow that would make strawberry milk.

Other than that, it’s been a pretty relaxing weekend. We saw Warcraft on Saturday, which was pretty good. We picked up some prescriptions, played some games, and I did a bit of scrapbooking and cleaned up the Ang Cave a bit.

I’m thinking tonight will be early to bed – I’m trying to rewatch Orange is the New Black before the new season comes out but I’m worried I might not finish it in time!

Two hectic months.

So, it’s been nearly two months since I sat down to write anything here. I don’t really know why – it’s a combination of being ultra-busy and trying to manage my mental health and emotions without pouring them all out to a million people. (Not that a million people would ever read this, but that’s not the point.)

I started my new job in June. I love my job, and I love where I work – the people are fantastic and I feel completely at ease with the job itself. It’s a steep learning curve, even after four years of school, but they’re being patient and understanding with me and are willing to help. It’s wonderful and I’m grateful for the opportunity I’ve been given.

The flip side of that is that my anxiety is being a super monster once again. I find myself panicking every time something goes wrong or I make a mistake or I have to answer a question – like if I’m not perfect I’ll lose this wonderfully amazing job that I love so much. Rationally, I can see that this is absurd. They wouldn’t keep giving me work and they wouldn’t tell me I’m doing well if I wasn’t. But mental illness is nothing if not irrational, and whatever energy I don’t spend on doing my actual job, I spend on keeping my brain in check at all times. It’s exhausting.

So exhausting, in fact, that I curl up in bed at 7:30 most nights and start to prepare my brain for sleep. It usually takes a few hours to actually fall asleep, but let’s just say my spoon levels are low enough that I don’t have the energy to sit up or socialize most days. The days that I -do- socialize, I take four times as long to recover from.

On top of this, the health issues continue to multiply. When I had my ultrasound to check for my Mirena, apparently they found a polyp on my uterus that needs to be removed. I don’t know when this will be (our hospitals here schedule things and then send you a letter to let you know when they’ve scheduled them) but that will be delightful, I’m sure. On top of that, I had to go in for some blood tests last week – the new specialist thinks I might have PCOS in addition to or instead of endometriosis. I’ve been tested for PCOS before and it came back negative, but I’d rather let this doctor do what he needs to in order to find some answers. I’m tired of feeling like utter garbage all the time.

Right now, I’m feeling the effects of my depression the hardest. I don’t know why I’m sad, and I’m not feeling actively sad, but rather just… empty. Nothing looks fun, nothing feels good, and I just kinda want to curl up in a ball in a soundproof box until I figure things out. The worst part is that I’m no longer seeing a therapist (she saw me on one of my “good” days and decided that I’m perfectly capable of handling this on my own and basically said that I don’t need therapy anymore) and I’m down to the last few pills of my medication. I’m terrified of trying to go into a clinic and get more meds because they might give me a hard time (the last one did, and made me feel awful about the whole situation) and so I’m just taking lower doses trying to make it last. Not good, I know, but sometimes my well-being suffers for the sake of my anxiety. It’s just a vicious circle, and I need a medical support system that is going to be there when I need it and actually listen.

In a nutshell, things are… mediocre. All of the good things are basically cancelled out by the bad things and I’m left with an empty feeling and anxiety. I’m not sure how much longer I can stay afloat, but I’m mostly just trying not to drown. We’ll see what happens, I guess.

Spoonless

Have you heard of the Spoon Theory? If not, you should read it. It’s a fascinating way to explain chronic illness or fatigue to someone who has never had to deal with it. It’s my go-to explanation, and I find it really helps. Of course, because I’ve been able to adopt this theory to explain my life, I’ve come to consider my low-energy days as “low spoon” days, and my friends all know that this is the easiest way to ask how I’m doing. “How are your spoons today?” or “Did you replenish your spoons with your nap earlier?” are some of the things I hear on a regular basis.

I went to the mental health clinic today and had a good cry or ten. (Hint: ten.) It was very intense, especially for a first appointment, but I’m glad I went. The therapist talked to me about some of the things that I’ve never really gotten to talk in depth about (things about my past, my family, and why I am the way that I am), as well as talking about the effects of endometriosis and anxiety on my energy levels and overall mental health.

I learned today that my immediate reactions to a lot of things in my life are not the appropriate reactions. Instead of giving myself a bit of room to relax and sleep and rest when I’m having a “low spoon day”, I instead berate myself (either mentally or sometimes out loud) for being “lazy” and spending my time wrong, or even for not being able to just do things like other people can.

The reality is that I’m almost always in pain, and I’m usually running on empty as far as energy is concerned. I’ve been fortunate enough to have built up a tolerance to a lot of my pain, and I don’t feel anything as much when I’m resting. However, when I’m out and about and doing things, I usually collapse at the end of the day, unable to do anything else.

This makes life harder for me than it is for a lot of people. I have to measure out my activities very carefully – if I walk the extra half mile to the ferry instead of taking the bus, I might not be able to cook dinner. If I socialize or game for long periods of time, I might only be able to do the bare minimum of activities the next day. It’s weird – it’s like when someone has no money (and believe me, I’ve been there lately!) and has to budget out their pennies. Except it’s just day-to-day activities that I’m budgeting for, and I’m budgeting a very limited supply of energy.

Over the next little bit, I’ll be spending a lot of time trying to balance these things. I start a new job on Monday (more on that later, once I’m more comfortable and feel more secure in it – anxiety is being a jerk right now and I don’t want to count my chickens too early!) and I’ll probably come home, eat, and sleep, for at least the first couple of weeks. But on top of that, I’ll be actively monitoring my thoughts – this will take a lot of energy, but I wonder if I wouldn’t feel better more often if I didn’t beat myself up constantly over things that I can’t really control?

Health Update

Doctor's Office (Tools of The Trade)

I’ve been debating writing a post about this for ages, and every time I start I stop again. However, a good friend reminded me that I’ve read countless blog entries and articles and things about the same things that I’m going through, so it can’t hurt to be honest here and potentially help someone else along.

That said, if you have trouble talking about the female reproductive system, you should probably skip this entry.

I’ve written before about the fact that I may have endometriosis, but that there’s no guarantee and no specific treatment. What I haven’t written is an update about what I’m going through and how things are working out.

In short, they’re not going so great. Before I get started though, let me explain about endometriosis. It’s not something that gets talked about often (and even appears to not be an actual word, according to WordPress!).

Endometriosis is the growth of tissue, similar to the kind that lines a woman’s uterus, elsewhere in her body. That ‘elsewhere’ is usually in the abdomen. This misplaced tissue responds to the menstrual cycle in the same way that the tissue lining the uterus does: each month the tissue builds up, breaks down and sheds. Menstrual blood from the uterus flows out of the body through the vagina; however, the blood and tissue from endometriosis has no way of leaving the body. This results in inflammation and sometimes scarring (adhesions), both of which can cause the painful symptoms of endometriosis and may contribute to difficulty getting pregnant.

From here.

Every person experiences endo differently, too, but the biggest factor is ridiculous amounts of unexplained pain. This is different than what a woman “normally” goes through during her period – for me, I’m in pain just about every day, all day. I’m stingy with painkillers, but they only reduce the pain down to a dull ache anyway. If I don’t have to be anywhere, I’m curled up with a heating pad or my heated blanket, or lying in a hot bath. I can’t function like a human being.

Now that the explanation is out of the way, let’s talk about my most recent doctor experience. It was different than any other experience I’ve had, in that the doctor started talking about options and seriously considering treatment. She told me that I’m basically a textbook case, but the only way to diagnose endo is through laparoscopic surgery (which I knew). However, she also wanted to do a few more tests.

She performed a biopsy on my uterus to make sure that the cells there aren’t abnormal – she said it’s unlikely but she wants to rule that out. However, what she found out at that point was almost more disturbing than the fact that I needed a biopsy to begin with: my Mirena has gone missing. I’m not pregnant (thank goodness) but they were completely unable to find the device, or at least the part of the device that is usually visible during an exam.

The consensus is that it may have fallen out, and I wouldn’t have noticed because I’m in so much pain and dealing with what I am. However, since we don’t know for sure, the doctor is scheduling me for an ultrasound (again) and an X-ray to make sure that it hasn’t migrated. One thing that I learned at the last ultrasound, after having the Mirena inserted, is that my uterus is tipped, which can cause complications more frequently with the Mirena (or so I’ve read).

In addition to the biopsy, the X-ray, and the ultrasound, the doctor has referred me to an endocrine and reproductive specialist. She said that he’ll be able to do a better job of diagnosing me since he’s a specialist, and he’ll also be able to help see me straight through to any reproductive problems I might have in the future (since this is a tricky disease to manage, and it often causes fertility troubles). So I’ve got a referral in to see him, though I don’t know when, and I’ve got a request for blood work to be done next month to check hormone levels and things like that. In theory, he’ll do the surgery (the laparoscopy and excision of anything that he finds while he’s in there) and I’ll be treated for a while – there is no cure, so this is the best that I can hope for.

Am I scared? Terrified. I’ve read a lot of blogs and articles lately, like I said, and I’ve found comfort in getting as much information about this tricky disease as I possibly could. I know what the surgery looks like (even watched a surgeon’s camera video of it from the inside) and what they’re going to do, and what the scars look like after, and how to handle recovery. I get it. I understand it. (I process things through research and learning as much as I possibly can so that I’m not caught in the headlights.) But I’m still scared.

Mostly, I’m full of what Mark calls my “what ifs”:

  • What if they can’t find anything during the laparoscopy?
  • What if they can’t find the Mirena?
  • What if they do find something during the laparoscopy, and can’t or won’t remove it all?
  • What if something happens during the surgery?
  • What if the biopsy comes back abnormal?
  • What if I have a job by the time all of my referrals go through? How do I get time off of a new job to recover from surgery for at least a week and go to all of these appointments?

…and on, and on, and on. My brain is a questioning sort of brain, and I generally handle them. It’s just a bit on overload right now. Here’s hoping it all gets taken care of soon – I want to move on!

2013: The Year of Uncertainty

2013 was a pretty intense year for me. From school troubles to mental health issues to physical health issues, I had a lot of things to deal with.

One thing that I didn’t post about is how my most recent specialist appointment went. I didn’t post it because I’m in a grey area – I’ve gotten what I’ve been told is basically a diagnosis for my chronic pain, fatigue, illness, and even contributing to my depression. The problem that I have is the word basically.

I’ve had trouble with doctors for as long as I can remember. Between the dreaded “lose some weight and you’ll be fine” and the “exercise will help with the pain” advice, I’ve been basically sitting there wondering why I can’t just get over whatever I’m dealing with and stop being lazy.

Turns out, I most likely have endometriosis, which is what I suspected all along. But once again, there’s that uncertainty: the “most likely” is the issue. The doctor did an ultrasound (not a diagnostic tool for endo but it would rule out other things), which came back normal, and said that short of pulling my uterus out and poking around in it with a pathologist, this is the best I’m going to get for a diagnosis.

It’s hard for me, when I just want answers, to take a “most likely” diagnosis. It still makes me feel like I’m faking everything and that it’s all in my head. But instead of sitting around waiting for answers (and I do have a good general physician now that’s looking into things and helping me manage the pain), 2014 will be the year of being proactive.

The first step is already done. The doctor suggested the Mirena to help minimize the pain and deal with the symptoms, and one excruciatingly painful doctor visit later, I’ve taken that step.

The next step is one I’m going to start in the new year, though. I want to take some time to mentally prepare myself for it, so I have a few days before I need to jump in.

See, for years, I’ve been trying to diet for weight loss and assuming willpower was the reason I couldn’t lose weight. (Well, a lack of willpower, anyway.) Turns out, inflammation is a beast that just wouldn’t be tamed – but I’m working to tame that beast now. I’m looking into different foods and their connection to this awful disease, and going to see if I can’t manage some of my trouble through different dietary changes. Don’t get me wrong – I already eat ridiculously healthily (especially for someone of my body composition, but that’s another story) – I just want to see if I can eliminate some of the chemical reactions going on inside my body that are causing this suffering.

Let’s face it, though: I’m an amateur at best. I have so little understanding of this sort of thing, beyond what doctors have told me. Because of that, I’ll take any advice I can get! What do you know about inflammation and chronic illness, and how would you approach such a huge change in your life?

My weight cannot define me.

Scales

I weighed myself this morning. Big mistake. Between normal weight gain, stress weight gain, medicine-related weight gain, and everything else I’m going through, I’m the heaviest I’ve ever been. In my entire life.

At first I was disgusted with myself. “How can I let myself go like this? Why am I so lazy? What’s wrong with me when everyone else can be thin and happy at the same time?” Then I told a friend that I was feeling miserable about it, and she told me that my weight just needs to be patient – I’m working on my mental health right now.

She’s right. (If she reads this, she’ll be super happy – she loves to win our debates!)

I can’t spend all of my time stressing out about the size that I am or the number on the scale if I’m ever going to help my mental state. I’m on two different medications for mental health and I’ve been seeing a therapist – I can’t just put all of that aside and worry about a number on the scale.

I’m doing what I can with what I’ve been given, and I’ve got better things to work on and think about than my weight. My weight is not who I am, and I need to remember that.

A New Combination

Pills

Sometimes, getting the help you need is difficult. I’m finding that it’s more of a combination of factors that needs to be just right in order to get everything on the table and get good help.

I saw a new doctor today. I didn’t have a problem with the previous doctor – he was very good and understanding – but I felt like I would be more comfortable with a female doctor talking about the issues that I’m having, so I requested an appointment with her instead. I made the right choice.

I walked in and told her that I was feeling nervous about the idea of going off of my anxiety / depression medication, and she explained that because I’ve had my symptoms for a long time (years as opposed to days, weeks, or even months) there was a good chance I’ll be working my entire life to find a combination of medication that works for me. She mentioned that the dosage I’m on for my Cipralex is the highest dose available, but that we had other options. What’s going on right now is that I’m going to start taking an antipsychotic at night to help amplify the effects of the Cipralex, as well as helping me sleep. I can’t wait until I finally have multiple nights with good sleep in a row, as opposed to this broken, messy attempt at sleep that I’ve been dealing with for ages now.

On top of that, I mentioned the fact that I’m in pain all the time and that I’ve been getting dizzy regularly – when walking past people in the hallway, or even sometimes just sitting at a table or reading, and she gave me a prescription for pain relief and anti-inflammatory, and told me to take that daily, and to make sure that I’ve always got food in my stomach, no matter what. Looks like I’ll be investing in some small portable snacks! I guess the dizziness is likely related to the blood loss and the pain, which makes perfect sense. On top of that, she’s recommended that I try to get more iron in my diet or with a supplement, and she’s going to reassess everything in a month.

I feel this huge burden falling off of my shoulders. I’m always afraid that I’ll be taken the wrong way – like I’m looking for medicine or attention – so I try to limit the amount of complaining I do (though I feel like my friends would beg to differ). It’s nice to be heard, and even nicer to know that I’ve got help to work through everything one step at a time.

Sick… again.

Sick

Here it goes: my continuing effort to keep it real. (Do people even use that phrase anymore? If not, we should bring it back.)

I hate being sick. I hate talking about being sick. I hate staying home and wallowing in my supreme sickness whenever it hits. I hate having to explain myself and feeling like I have to justify everything I do. I don’t like sounding like a hypochondriac every time I look for help or try to talk to someone. But here’s the thing: I am sick – more often than some people, which is why I often feel so bad about it all. What a thing to feel terrible about, hey?

At the risk of TMI-ing the entire internet, here’s the Cliff’s Notes (or I guess that since I live in Canada now I should get used to calling them Coles Notes) version of what’s been going on with me.

  • I’ve been dealing with extreme, nearly constant pain for quite a few years now. It started as “normal” menstrual cramps – or so I thought. Turns out, it’s not supposed to hurt badly enough that you’re spending your day on the bathroom floor praying to fall asleep so you can’t feel it anymore. After a few years passed (about a decade), these pains became more and more frequent, and it got to the point where at least three weeks out of the month, I’m in enough pain to keep me from wanting to walk anywhere or sometimes even leave the bed or the couch. I’ve mentioned it to doctors in the past, most of whom told me what kind of over-the-counter meds I could take to help ease the pain, and one went so far as to tell me that my weight was the problem and that I needed to eat better and work out more, and all my problems would be solved. However…
  • This past spring, I visited my doctor to renew my prescription for my anxiety medication, and mentioned in passing that I was concerned – I was on day 28 of my period. Not of my cycle, but of my actual period. His eyes went a bit wide and he looked into what could help stop the bleeding and the pain. As it turns out, migraines with neurological symptoms (I get a strange blue aura when I’m going to get a migraine most of the time) are dangerous with birth control pills and can cause a stroke, so that was out of the question. He put in a referral to the Women’s clinic in the city and I went through the rest of my semester missing most of my classes and even withdrawing from one after the professor said that he would not give me credit since I was not there for the lectures.
  • After my first appointment with the clinic, they sent me for blood tests and scheduled an ultrasound. The main possibilities on the table were Endometriosis or a bleeding disorder. The blood tests ruled out any bleeding difficulties and actually showed me to be quite healthy other than the pain issue, so now I’m waiting on the ultrasound for further information.
  • In the meantime, the best option for my pain and suffering was to have a Mirena inserted to try to lessen the symptoms and issues associated with what should be normal female bodily processes. Let me tell you – that was a nightmare (though I don’t regret it in the least!). While I know the procedure isn’t supposed to be a piece of cake (though some say it is and that they leave the doctor and head straight for the gym, making me wonder if they’re even human), I took a week off of classes to stay on the couch and put my faith in Advil and Aleve. Three weeks later, I’m still in pain – I’m waiting for my ultrasound to have everything looked into, and treating the issue as it comes.
  • Fast forward to now. I’ve missed a week and a half of classes in total, out of a total of three weeks. I’ve kept up on my coursework and I’m studying as much as I can, and I’m genuinely sick and in pain, but I feel guilty every single time I’m lying on the couch when I should be across town in a classroom. I’m terrified that I’ll randomly fail all my courses and be unable to graduate, ruining all of the hard work I’ve put in over the past three years. Yes, I realize this is an exaggeration of what might happen, but welcome to the world of anxiety disorders!
  • So of course, what a time to come down with a crazy mystery flu. I’m dreading sending the email to my professor to say “Hey, I didn’t sleep last night because I had a fever and chills, a migraine, heartburn, and a throat so sore I’m convinced my cat tried to climb it, so I won’t be in class. Again. Don’t fail me, please.” My professors have been super nice and helpful thus far (with well-wishes in every email that I’ve sent and even asking how I’m feeling on the days I’ve gone in to class!) but I’m waiting for the day when that drops away and they decide I’m a slacker.

So I guess that’s what’s going on inside my head, and inside my body. Not that anyone asked, but it feels better to put it all out in writing somewhere, even if it creeps people out. Hey, I aim to please!

Blank Pages

Blank Sketchbook

Blank pages are terrifying. I seem to have a very specific blog-related form of writer’s block, and it’s driving me nuts! I have all sorts of thoughts running through my head, and things that I want to write about, and then I hit a wall and start thinking of all the reasons that I shouldn’t write about them. They’re too boring. They’re too sad. Nobody wants to read random rants. On and on and on.

I know that my brain is usually tricking me with these thoughts, but they’re hard to shake. Mental health issues are a tricky beast. It makes me feel good to know that people in general are paying more attention to them, but it still doesn’t help me in the war to tame my own beast in my brain.

My doctor is talking about taking me off of my medication in about two months. He says that the medication was not meant to be a long-term solution to my anxiety and depression, and he seems to think that it’s now coming to be the time when I should have it under control. I feel awful about this, but I feel like I need a new doctor to talk to and figure things out – like maybe he isn’t taking me as seriously as I’d hoped. Even with the medication I’m functional at best, and I have so few “good” days that I’ve wondered if it’s enough. I have good moments, of course, but they seem to be fewer and further between these days. Despite the medication, I still have random bouts of “emptiness” – every single day.

I try to keep from burdening my friends with these thoughts. They all have things they’re going through, and I don’t want to trouble them. I feel like there’s not much I can say that will explain how I feel or why I feel that way, and I feel like I “should” be able to just pull myself out of whatever funk I’m in, and make it better. So instead, I put on a happy face and try to fight off thoughts about how I could lose all my friends, or how I annoy them, or other silly things like that.

I feel like I’m on a time limit for the bit of sanity I’ve hung onto for the last 6 months, and I’m honestly frightened. If he takes me off the medication, what happens then? Do I fall back into my black pit of despair and just deal with it for the last year of my education? How will I find a job and function in society if I can hardly get up and take a shower in the morning without wanting to break down in tears or curl up with a blanket and hide from the world?

Why can’t I get a handle on my thoughts?