Being Invisible

Emily with Chronic Pain Bear

I'm going to start this post out that I'm not writing this to try and get sympathy. I just wanted to share some thoughts about how having an invisible illness can make you feel invisible sometimes.

I've talked about this a lot - how I suffer from daily chronic headaches that often turn into migraines. I'm sure a lot of people think it's probably no big deal. There are a lot of people who don't know what a migraine is, that it's much, much more than a bad headache. Because of this, it's not in the same ranking as other diseases out there.

Case in point, my husband got diagnosed with MS in January. It's a horrible debilitating disease, but at this point, he's ok. He's noticing some small things, but he hasn't had an episode in over a year. He did what he had to do - he changed his eating habits and started exercising. He's lost 50 to 60 pounds and is in the best shape he's been in since I've know him.

Me on the other hand, my pain levels have gotten worse. So much so, that I had to go to the ER a few weeks ago. I muddle through but there isn't anything that I can do because no treatment I've tried works. Can you guess who's health issue worries our loves more? Can you guess who gets more questions about the state of health? Hint, it's not me.

I don't begrudge Todd all the inquiries about his health. I worry about him too, but I live with him so I see that he's in much better shape that I am. For me, I'm just invisible.

I'm on several Facebook groups with other people with chronic pain. It seems like every week, someone is talking about how their spouse has left because they couldn't deal with the constant pain of their significant other. I'm very lucky to be married to Todd - we started dating when my pain first started. We've been together over a decade and our marriage is still strong.

Emily is also a blessing to me. Even though I probably should not have put my body through a pregnancy, I'm thankful every day for my little girl, even though I've been told that I shouldn't talk about my illness with her at all. She knows about my chronic though and I think it makes her a more compassionate person.

I also try to be a more compassionate person. I have several friends who suffer from chronic illness, and I try to keep up with how they are doing. I know how isolating it is to have a disease with no cure.

In the past, I've lost several friends in part because of my chronic pain. Even two so-called best friends. I know that my pain makes me flaky sometimes, but I'd love to be invited to things. If I feel well enough, I love getting out of the house and doing fun things.

My situation is complicated by the fact that I have to bring Emily with me just about everywhere I go because Todd works 2nd shift. She's old enough now that I can at least go to choir practice and Emily will sit quietly and color. But I tend not to go to the variety of geek stuff around town because Emily may be bored. I would love to be able to game again but I don't see that happening. I'd love to play board games, but most of our games really don't work well with just two people.

It really is a first world problem but it is one that it compounded by the fact that I'm invisible. If I keep having to cancel, I stop getting invited. I fade into the woodwork and am not thought of - at least that's how it feels.

When someone gets sick with something that is even vaguely treatable, it seems like people will flock to them. Keep up with their triumphs and their defeats. When someone has chronic pain, people are there at the beginning but then they fade away. I know it can be hard to deal with seeing a friend whose in pain, but think about how that friend must feel.

Now, I didn't really write this for myself. Yes, I get lonely sometimes. The vast majority of my friends live in the internet and I don't get out of the house a lot. But a lot of that is my own choice or a product of the situation I'm in right now with only one car and a husband who works 2nd shift.

But if you have a friend who has a chronic disease - something that they will be dealing with the rest of their life, try and remember to include them. Text or send an email to see how they are doing every once in a while. Try to keep them visible instead of letting them fade away.

A Day in The Life With Chronic Migraines

Image: http://migraine.com/

June is National Migraine Awareness Month and I'm hoping to do several posts to promote awareness. First up is how my chronic migraines can really screw with my life.

I have daily chronic headaches that get migraine bad. And when I say migraine bad, I'm not just taking about higher pain levels. I get auras and nausea, my brain gets fuzzy as does my vision. I get the whole migraine package.

This particular migraine started on Saturday after Wizard World. I slept poorly Saturday night and was feeling worse on Sunday. We drove home on Sunday and I went right to bed.

Monday I still felt bad but I felt well enough to work. I worked my shift and went back to bed. I rested all day. But I went into the living room after I put Emily to bed. There were voices outside my door which I knew someone was in my car port. I went and peeked out my windows and there was a man and woman walking down my driveway. I'm not sure why they thought it would be fun to trespass on my property, but it gave me a small panic attack.

I still rested the rest of the evening and got to sleep early. I slept like a rock but Todd said that I kept making weird noises in the night. I didn't wake up at all during the night which is odd for me

Now we get to the day in the life part. I woke up yesterday feeling like a train had hit me. I stumbled out of bed and went to my computer. Everything was blurry to the point that I had to touch my face to make sure I had put my glasses on. I knew I couldn't work like that so I emailed in sick.

I am very lucky because whenever I get sick my boss just moves my hours to my day off which is Sunday. I was a kind wife and I let Todd sleep in. I went into the living room with Emily and we watched all the Sailor Moon episodes that were up on Hulu.

During the last episode, Todd got up so I headed back to bed. I turned on Netflix and Charmed. I was sick enough that I couldn't do anything else - I tend to be a multitasker so my hands are using busy with cross stitching and other things. But the pain was bad enough that all I could do was lay there and watch tv in a dark room.

Finally my body decided that it was time to sleep. I was having a hard time keeping my eyes open. It was nearly time for Todd to go to work, so I had Emily come in the bedroom. She amused herself with our iPad while I cat napped for a bit. I felt better when I woke up. Enough that I could make supper and hang out with Emily.

I got Emily to bed and I went back to bed myself. Watched a little more tv and cross stitched a little more. Then I went to sleep.

Today I still am suffering from the same migraine but it's a little better so I'm working. Yesterday was not a typical day in my life, thankfully, but it happens thanks to my chronic migraines. Thankfully I have a good job and a good boss, an understanding husband and a great kid. But just a small thing like people walking up my driveway can give me a panic attack which can lead to higher pain levels.

My life is a game of Russian roulette. I don't get shot but I do get bowled over with the pain sometimes. I try to be as normal as I can but I'm not normal. I'm a chronic migraine sufferer.

Literal...

Image: http://charlotteheadachecenter.com/

As I've mentioned before, I suffer from daily chronic headaches. They get migraine bad often, and I'm not just talking about higher pain levels. I get auras that give me vision problems, I have a hard time thinking clearly and I tend to take things very literally.

It took me a while to realize I was being so literal. I did it this morning without thinking about it at work, but I did realize after a moment that the person I was talking to was being sarcastic. It's a very interesting side effect to my migraines.

When my pain levels go up, I feel my intelligence slipping down. I can't brain today is a fact of life for me some days. I think because of the intense pain, my higher brain functions will short out a bit.

So if I take something you say either in person or online literally, it's probably because my brain isn't working correctly.

What My Migraines Feel Like

Me in the midst of a migraine

The only name that I was given for my chronic condition was daily chronic headaches. I usually describe them as pain in my head that I have all the time that can get migraine bad. I think a lot of people think of migraines as a really bad headache, but they are much more than that.

When my pain levels are low, my pain is usually just located in my forehead. It’s usually a dull ache that I can generally ignore. This is how I feel most of the time and the pain never goes away completely.

My pain levels can shoot up for a variety of reasons. I have triggers like changes in the weather and the smell of raw onions. But sometimes my pain levels can go up for no known reason. When they go up, that’s when I start having migraines.

When I get a migraine, the pain moves down my face and my whole face will hurt. If the pain is bad enough, my teeth will ache and the pain has even moved down as far as my neck and chest. I also get auras. My sight will start to get fuzzy which can make it very difficult to look at a computer screen especially if I’m in a room with bright lights. I’ll also start to lose brain power. I just can’t think as quickly or as well as I do when my pain levels are low. My sensitivity to light gets worse and my depression gets worse if the high pain level lasts more than a few days.

My migraines aren't just a lot of pain, but it’s a whole neurological meltdown. I try to muddle through the best that I can. No medicine works so I tend to wear cold packs to try and dull the pain. Otherwise, sleep is usually what helps the most. Thankfully the pain and auras do ebb away and my pain level drops back to normal levels so I can resume my normal life.

Chronic Pain, Pregnancy and Parenting

Emily with Chronic Pain Bear

When I was younger, I had the life goals of being married and having kids. While my goals changed over the years, I still wanted to be a mom someday. My chronic pain started just as I was starting to date Todd. I got in control of the pain somewhat and decided that I wasn't going to let the pain stop me from living my life.

Early in our relationship, Todd and I had a long discussion about what we wanted long time out of a relationship as well as what our goals and dreams were. Todd wasn’t as gungho about having kids as I was, but still was willing to have one. We decided that we weren’t going do anything but try. If I couldn’t get pregnant the old-fashioned way, we just weren’t going to put ourselves the stress of trying to conceive with fertility drugs or IVF.

We got married September 30, 2006. Because we were already living in NC, we went home to Michigan to get married. All of our vacation time for that year was used up on our wedding so we waited a year to take our honeymoon. As soon as we got back from our Disney World honeymoon, we started trying for a baby.

At the time, Todd and I were working separate shifts. We only saw each other on the weekends so I figured it would take a while to get pregnant. We were both very surprised when I found out I was pregnant three months after we started trying.

Pregnancy isn’t fun at the best times, but my chronic pain made it worse for me. I did not really enjoy being pregnant for most of my pregnancy. The 1^st trimester was miserable for me. My pain levels were higher than usual and I was so nauseous most of the time. I could hardly eat and lost a ton of weight. Because of the weight loss, I only gained about 8 pounds over the course of my whole pregnancy.

The 2^nd trimester was a little better. My pain levels returned back to normal and I started to show. Emily was starting to move but it didn’t affect my sleep. I felt good enough in my 8^th month to go to Dragon Con. I had a great time, though thankfully took advantage of the disability services. I was able to wait for panels by sitting in the handicapped area where there were chairs and staff members would bring us water sometimes.

Once Dragon Con was done, I started feeling worse. I was getting huge at that point, and was having issues moving around. My pain levels spiked again and I was having a lot of trouble sleeping. I only had one comfortable position when I was lying down, but Emily didn’t like it so she’d kick me until I moved. It was unpleasant.

I was induced on October 17, 2008. After laboring for 13 hours and not progressing, I had a c-section. Emily came into the world just fine, and starting nursing like a champ right away. We stayed in the hospital a couple of days so I could recover, and then we headed home.

Parenting was exhausting in the beginning. I would keep her in our room so I could sleep while she slept. I ended up being laid off from my job right before I was supposed to go back after maternity leave because of the poor economy. I never intended on being a stay at home mom so it was a bit of an adjustment.

I ended up suffering from postpartum depression and I was untreated for eight months because I thought I was just depressed because of losing my job. I got help and as Emily got a little older, I started to feel more human again.

Because I’ve had chronic pain since before Emily was born, she’s only known me with my pain. I think this may help her be a more caring person when she grows up. It’s given her a unique view of chronic pain even at the tender age of four.

When she kisses my forehead, she says she is kissing my headache. She gives my headache lots of kisses so I can feel better. One day when I was feeling really bad, she gave me one of her teddy bears. He got the name Chronic Pain Bear and I snuggle him when I’m feeling really badly. She’ll also cuddle with me and be quieter when she knows I’m having a high pain day.

I feel bad when my pain level is so high that I can’t play with her but luckily she is an understanding and caring child. While having a baby when suffering from chronic daily headaches probably wasn’t a great idea, I’m glad I did because I love my daughter very much.

My Struggles with Depression

The face of depression (and a Stormtrooper)

I think everyone with chronic pain experiences depression sometimes. In my case, I've experiences two types of depression. This isn't scientific but I’ve found that my depression is either situational or chemical.

Situational means that I’m in a situation that sucks and there isn't much that I can do about it, so I get depressed. Chemical depression is when there is a chemical imbalance in my body. Both kinds are not any fun but they feel different to me.

When my chronic pain started, I went through nine months of trying different treatments that didn't work. I became increasingly more depressed as the time went on because the pain was constant and bad. There was a logical reason why I was depressed so when my doctor put me on an antidepressant, it didn't work. This was situational depression because my situation at the time sucked.

I managed to work my way out of my depression as I got a hold on my pain. I didn't deal with ongoing depression again until after my daughter was born. It took me eight months to figure out that I was suffering from postpartum depression. The thing that clued me into the fact that I was dealing with a chemical imbalance was that we were supposed to go to a local convention and I wasn't excited or happy at all. I just felt down and out of sorts. I knew that I needed help at that point and I went to my doctor. I got put on antidepressants and I felt like a whole new person once they started working.

I eventually went off the antidepressants as the postpartum depression got better. Last year, I started having panic attacks because of my family drama. I cut several people out of my life and I felt much better, so I went off the antidepressants again. In this case I think it was a little chemical with a lot of situational depression because the antidepressants helped but getting rid of the awful people in my life was what helped the most.

It was about a year later when I started feeling out of control with depression and panic attacks. This was all chemical because things were going pretty well with my life. I felt totally out of control and wasn't just acting like myself. I got back to the doctor and got back on antidepressants. For now, I’m not planning on going off the antidepressants. I felt so much better once I got back on the pills.

This week I've been experiencing some situational depression. My pain levels have been very high and it’s been making it hard for me to do just about anything beyond working and caring for Emily. I feel really worthless when my pain levels skyrocket, in part because I've lost several friends due to my chronic pain and depression. But like the Bloggess says, Depression Lies and I try to muddle through any type of depression I experience.

My Chronic Pain Journey - Part 2

Pregnant with Miss Emily

This is the second post on my chronic pain journey thus far. Click here if you want to read the first post.

After I had gotten a handle on my pain, I went through some big life changes. I moved in with Todd, and then a year later we moved down to NC. We got married, honeymooned at Disney World a year later and 3 months after our honeymoon, I got pregnant.

A lot of people told me that their migraines got better after they got pregnant, but mine never did. The first trimester was not pleasant because of extreme nausea on top of my normal pain. The second trimester I felt ok, and I was even able to attend Dragon*Con eight months pregnant. Once we got home from Dragon*Con, I started feeling bad. I was getting so big that it hurt to move and my migraine pain levels got higher.

Finally I gave birth to Miss Emily via c-section on October 17, 2008. It took some adjustment to parenthood, especially since I suddenly became a stay at home mom when I got laid off. I did suffer from postpartum depression, but I was able to get help for it.

Life went on for a couple of years and my pain didn't change. I did develop a few other issues like very bad eczema and IBS, but mostly I was able to cope with it all as I went back to get a 2nd college degree.
Things took a turn for the worse winter 2010. I lost two days that I can’t remember at all – it was Christmas Eve and Christmas Day. When I was able to start remember, I was very paranoid. Nothing in my house looked familiar and I was seeing things out of the corner of my eye. Todd says that I was awake during those two days but I was really out of it.

We dropped Emily off with friends the day after Christmas and Todd took me to the ER. They ran a bunch of tests on me and I was admitted to the hospital. The only thing they could find is that there is a mass in my brain that got inflamed. It went down so the doctors said it wasn't cancer and I hadn't had a stroke.

The neurologists weren't able to do anything and again the drugs they gave me didn't work. The medicine actually dried my skin out that it made my eczema even worse. It took a long time for me to recover. For months, I would have trouble finding things in my house because everything still was unfamiliar. But it subsided as did the things I was seeing out of the corner of my eye. The headache pain was still there.
The doctors weren't able to figure out why I had this mass in my brain, but it wasn't hurting me anymore. Todd had a theory that it was stress that caused it because I was really stressed out about school right before the episode.

Things got back to normal for the most part. I finished school and I got a temp. job doing filing. It was soon after I went back to work that I started having panic attacks. This was due in large part to the behavior of a family member. I cut that family member out of my life and saw my doctor. I was on antidepressants for a while, but I was dumb and stopped taking them.

I was good for about a year. I got a new job working from home and my pain levels were staying about the same. But this past spring, I started having panic attacks and high anxiety again. There was no good reason for it, so I ended up back on anti-depressants. This time, I’m not going to go off them because I feel much better now.

Even though I am able to live a fairly normal life, I still have the pain. It gets very bad sometimes but usually I can cope. It will be ten years with the same headache next month and I've resigned myself to the fact that I’ll probably have this pain for the rest of my life. But I’m not going to keep it from letting me live my life to the fullest.

My Chronic Pain Journey - Part 1

The Face of Chronic Pain

The thing the makes my life the most chaotic and the most challenging is my chronic pain. I've been dealing with this pain for nearly ten years and it’s been quite a journey. Because this is a long story, I’ll be writing up two parts.

As a kid, I was pretty healthy though I did have a tendency to be overweight. I did start having medicine allergies pretty early on. I’m allergic to a bunch of medicines, most notably amoxicillin, ibuprofen and aspirin. But all that was going to change in my mid-20’s.

I had gone to a local water park with a friend from college in August 2003. I got really sick afterwards, including an ear infection. My doctor kept telling me that I didn't have an ear infection over the course of a month until I ended up in the ER. Finally I was diagnosed with a bad ear infection and was given medicine. I got better, except for having permanent hearing loss in that ear, except for a headache that lingered. I've had that same headache for nearly ten years now.

The next nine months were some of the worst in my life. I was in and out of the ER because the only thing that helped my pain was heavy duty narcotics. I was also in and out of my doctor’s office as we tried ever headache / migraine medicine on the market. None of the medicines worked long term and most of them gave me bad side effects thanks to my sensitivity with drugs.

I also saw some specialists. The neurologist that I saw thought I was making it up, but gave a name to my condition – Daily Chronic Headaches. Though I think daily chronic migraines is a better label since when my pain gets bad, I get migraine symptoms like auras and brain fuzziness. I did get MRI’s and CAT Scans, but they didn't show anything which is probably why the neurologist was less than sympathetic.

After a while, I started having rebound headaches from the narcotics I was getting in the ER. I was really depressed, and my doctor tried an antidepressant. It didn't help because my depression wasn't chemical; it was because I felt I was in a hopeless situation. My doctor even tried changing my birth control but nothing helped.

During this time, I was working a full time job, though I did have FMLA so I could take time off if my pain was really bad or if I needed to go to the doctor. I was also just starting to date my now-husband, Todd. It was a long distance relationship and we managed to make it work despite my chronic pain issues.

I went to visit friends over New Year 2004 and I had one of my worst migraines to date. We had gone to the Hard Rock Cafe in Detroit. It was very loud, but what set off the migraine was the smell of raw onions on the plate across from mine. Todd ended up driving me home through a snow storm, and I ended back in the ER. I went and saw my doctor afterwards and he told me that I shouldn't go into noisy places anymore.

This pissed me off – I was 26 years old! I wasn't going to live my life hiding and decided I needed to take control of this pain. I started a pain journal and began finding out what my triggers are for me. I found ways to cope when the pain got high, since no medicines work, and I started coming out of the fog.

I was able to manage my pain even though it was and is still there. And I've been able to do things like go out to eat, go to noisy concerts and even have a baby. In the next post, I’ll talk about chronic pain and pregnancy, as well as my brain issues.

Why Chaos? - An Introduction

Image: Mandy Horetski

Chaos is a nickname that was given to me years ago and it is a name I've embraced. My life is chaotic so when I was given the name by a dear friend, it just seems to fit.

My life is chaotic in several ways. First I’m the mom to a four year old little girl. I think every parent’s life has a least a little chaos in it, especially when their children are very small. I thankfully have a wonderful husband who is my partner as we try to raise Miss Emily as well as possible.

My work life is a bit strange because I am lucky enough to be able to work from home. I work in a call center doing tech support. This can be chaotic as customers get very upset sometimes because their internet doesn't work. But it’s a good job and I enjoy the 2 step commute from my office from my bedroom.

Another facet of my life is that I’m a lifelong geek. My dad, who is a geek himself, read Lord of the Rings to me when I was very small. That started me down the path and now most of the things I love are geeky in some way. I’m big into the Firefly and Doctor Who fandoms, though I like a lot of geeky shows. I’m currently in the midst of trying to watch all of Supernatural in hopes of being caught up before the next season starts. I also love video games, novels, and costumes. I try to get to several conventions every year, including a yearly trek to Dragon*Con in Atlanta. My husband is also geeky so we enjoy watching movies, TV shows and playing games like Magic, Munchkin and Settlers of Catan.

The last piece of my chaotic life is the least enjoyable. I suffer from daily chronic headaches. I’m always in pain and it can get migraine bad sometimes. It’s not just the pain that makes me suffer, but I get the migraine symptoms like auras and brain fogginess as well. I've had the same headache for ten years. I’m lucky that I can function fairly normally most of the time, but sometimes the pain just knocks me out. This causes the most chaos to my life.

But I make do the best that I can and I’m fairly happy with my chaotic life. In this blog, I’ll be writing about all aspects of my life, both the good and the bad. Because all of these things make me who I am, and that is Chaos Mandy.