Today I dyed my hair… and pulled hair out in clumps

Today I dyed my hair. This will come as no shock to people who know me. Surprisingly bright red hair is not my natural color, though when I was in High School it was naturally auburn…. But I digress.

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Red!

For a few months I’ve been noticing a lot of hair laying around in various places. People would comment on how they always knew where I had been because there were long red hairs clinging to things. My whole life I’ve had very thick hair, so shedding was not unusual for me, but this seemed to be quite a bit more.

Then I started noticing I would pull out handfuls of hair when running my hands through it. And then I looked at my hairbrush and was astonished at the amount of hair clumped on it. At first I thought it was just from stress, shedding a bit more than usual. But after a week going by with a massive clump of hair on my brush I started to think this was one of the symptoms of Lupus…. Hair loss.

I didn’t think a whole lot about it. I told my friends and people didn’t seem to really find it bad, neither did I.

But today I dyed my hair. I really saw the patches of no hair, and the ability to see my scalp all the way around my head, and the receding hair-line I always took for granted. I pulled away clumps of hair into my hand and sobbed.

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Lovely Lupus rash

It seems like such a trivial thing, having hair. But it’s just another visual change that has happened with my Lupus diagnosis. Most things are invisible…. You can’t see that I’m absolutely exhausted and am struggling to finish the day. You can’t see that I have purple bruising under my eyes and a bright red butterfly rash because I’ve gotten quite adept at makeup. People always say how I look healthy so I must be feeling better!

What a shitty thing to hear when you feel like rubbish. I try to take it as a compliment at my hiding skills. After years of living with pain you end up having a new normal. Things that before were absolutely terrifying and unbearable are now everyday or frequent occurrences. Have the nurse take 12 vials of blood? No problem. Rate your pain has become hilarious. Let’s see…. Today I feel like someone is shoving knives into my stomach, my neck hurts so bad I can’t turn my head very far, my knuckles are so inflamed I can’t use my hands well and speaking of hands I just flung 3 days worth of samples into the air because of my tremors. So…like a 4? Mostly just an everyday baseline… so maybe a 3. Let’s go with 3.

But most of that is invisible. And I can pretend I have a semi-normal life as a grad student. I can pretend that of course I will have the energy to get my PhD. Of course I would love to go to lunch with you and lets just ignore the fact that one of the most kind and sweet people in my life has been scheduling with me to have a girls night and I have cancelled every time. EVERY TIME. Why? Because by Friday I am a zombie. What do I do all weekend? HAHAHAHA. I SLEEP. I recover from the week of actually getting out of bed. Are my meds working? Who the hell knows? Maybe I’d be worse without them. I’m certainly not going to get off them and find out. Can’t they fix me? My god, put some money into research (basic research too my friends) and maybe someone will figure it out. Until then? The joys of anti-malarial drugs, immune-suppressants and anti-inflammatories.

Don’t mind me while I sit on the floor in the middle of lab. I’m fine. Just trying to make the world stop spinning. Keep talking and I’ll try and keep up.

But today I dyed my hair. And saw a real visual sign of Lupus. And it sucks. And it’s terrifying. And I want to just give up and say forget it all, this is too hard and I’m way too tired. But not today. Today I will cry and I will bitch and moan. And tomorrow I will go to work happy that at least one milestone has been accomplished with my research (this, strangely, happened this morning when I found a genetic combo I’ve been looking for for about a year!) and maybe I’ll be able to finish. At least that’s what I’ll pretend. Just like the rest of it.

 

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One weeks worth of hair in my hairbrush

Sometimes life can suck

**** This is not a positive or inspiring post. I debated whether I should revise it to be more uplifting and decided against it. There have been times when I’ll search for posts from other people dealing with their issues and am disappointed when it’s all super positive and happy. It’s great to get to the point where you can look back and move on, but there’s a big chunk of time between when something happens and when you get over it that most people won’t talk about. So let’s be honest, sometimes life just sucks. And that’s ok to admit, and it’s ok to talk about it.****

I had my first more-than-mild lupus flare since the original 6-month debacle, which I have to say, was an experience. Since getting the lupus diagnosis I’ve tried to avoid things that come with the possibility of promoting a flare. From not going out to parties to limiting sun exposure to avoiding concerts to any kind of social interaction that could include bright fluorescent lights, loud noises, close quarters…….. you get the picture. This has, as expected, affected my life in ways I never wanted to admit. I’ve often wondered why anyone would want to be friends with someone like me now. I have to cancel plans and can’t really do a whole lot of anything. How boring have I become?! I think this is something that many people with chronic illnesses face on a day-to-day basis. Who we were is not who we are now. There is a grieving process that has to occur and then we have to figure out who we have become. It’s easy to say that you are not your illness, but that may be the type of luxury thinking that people without this kind of issue try and throw at the problem. No-one wants to deal with the fact that you have changed. Your life has changed and how you function in it has changed. In reality we are not our illness, but we are the person dealing with it. While you can push through the cold/flu/whatever, we are left trying desperately to figure out if pushing just a little bit more will end up being the last straw for our bodies to give out. And then of course there are the situations that cause a flare that we can’t control, which is exactly what happened this time.

I went to the dentist. It was not going to the amazing concert with my friend (which I didn’t go to for fear of a flare,) it was not the strenuous activity spent outside in the beautiful mountains (which I ended up enjoying for about 30 minutes before turning into a boring person sitting on the bench for fear of a flare.) Nope, it was the dentist. Who I had to go to. It was the bright lights, the drill, the shoving of needles into my gums and the normal trauma of a crown. Months of playing it safe ended up with my immune system attacking multiple organ systems.

It started with a low grade fever at the doctors office, after about a week my platelet count had dropped, my hormones were a wreck (think PMS on steroids,) my back was a giant painful spasm, migraine in full swing, pure exhaustion and there was a giant cage wrapped around my chest, just to name a few. All I could do was lie in bed and think. The idea of seeing anyone else was something I just couldn’t imagine, pretending I was ok was not an option. I’m lucky in that I have family and friends who care and check up on me. Throughout this I’ve met some amazing people who seem to be able to see beyond the “sick me” to the “me” underneath, and for that I am grateful.

I’m lucky not only for the people I have in my life but for the fact that this is one of the few moderate flares I’ve ever gotten, and it’s already going away. Many people deal with much worse on a normal, everyday level. I’m also lucky to have found a doctor that worked with me to find a cause and start treatment.

Not that this is easy. It’s a struggle to think about the fact that this is something I’ll have to deal with for the rest of my life. It’s also something that those who are close to me will have to deal with for as long as they’re around me. Whatever I do I have to consider the potential options, from whether I stay out that extra hour to whether I chose to have kids or not. I have to think about how what I do will effect the people around me.

We all have our issues that we deal with, the everyday struggles and the ones that tear at our souls. But on some level it doesn’t really matter. Regardless of whether we “figure it out” the world still goes on. Life doesn’t stop to give you a chance to catch up, it just keeps going. One day you’ll wake up and it will be a little bit easier to just keep going. Cheers to the good days.

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Post Procedure

beachPost recovery:

It’s amazing how the attitudes of doctors change when you get back test results that show an abnormality. After two years of wishy-washy test results, saying something might me wrong but nobody could figure out what, I think most doctors had started to think I was making everything up. Honestly, after being treated that way for the better part of a year I was starting to question it myself. Maybe I had turned into a hypochondriac who was just depressed and looking for a way out. But finally, something came back and abnormal. To most people an abnormal test result is terrifying and certainly not something to hope for. For those of us managing a chronic and difficult to diagnose disease it can be a lifesaver.

Walking into the doctor’s office after my result was a bit interesting. The doctor who had from the beginning shown that he questioned my symptoms was like a completely different person. Now I deserved actual treatment. Now I deserved a referral to a specialist in order to really nail the diagnosis down. A medication that I had been trying to get for many months was offered without question. Keep in mind, this medication is not a barbiturate, not an opioid, produces no “high” and is not at all addictive. It just decreased nerve pain. And it did. For the first time in about two years I had a few hours of relief.

It amazes me and infuriates me that it took this test to convince doctors that I am unwell, that something is indeed wrong. Interestingly we are now deciding between the two diagnoses that I have said were the possible ones all along. But now the doctors believe me and agree.

It’s sad that we live in a world where people in pain are made to feel like they are making it up when a single blood panel comes back normal. I had a pain specialist point blank tell me that since I didn’t have a bulging disk in my neck I couldn’t be in pain. Said that to my face as I sat there crying and hunched over. I was told that I was just overly stressed and excitable. All too often women are told it’s all in their heads.

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The pup is thrilled that I can take her to the beach again.

It’s taken two years to finally be taken seriously by doctors. I’m lucky, most people end up on the doctor-merry-go-round for at least 5 years before getting somewhere.

Here’s to being a loud, obnoxiously well versed in medical research, stubborn, squeaky wheel, non-med compliant patient.

I may be annoying to some doctors, but I finally got a possible diagnosis. It shouldn’t have taken a painful, expensive and exhausting test to be taken seriously.

So Proud

The only reason I did the procedure was because my doctors wouldn’t do anything until I did it. Sure they would see me —so that they can say they are “continuing care.” But no treatment. No actual help. So what options do I have?

hospital******A pre-emptive note- I wrote the following in pieces while recovering from a procedure. This is in all ways a rant. If you don’t like rants, please don’t read the rest! ******

I’ve had several people lately tell me how “proud they are of me” for agreeing to do a medical procedure that I DID NOT WANT TO DO. I’ve said no to it for almost 6 months. When I finally agreed to do it and told a few people, some of them were proud. These are people who have been somewhat knowledgeable of what I’ve been going through. Not all of it. I think only one person other than me knows the full extent of it all. After the first person said they were proud, I was a little confused, but figured maybe they were proud of me doing something I was afraid of? Maybe?

After the second I wasn’t so sure. At this point, lying on the couch for the 4th day after the procedure, dealing with the massive pain I was afraid of, I’m even less sure as to why someone would be “proud” of this. The only reason I did the procedure was because my doctors wouldn’t do anything until I did it. Sure they would see me —so that they can say they are “continuing care.” But no treatment. No actual help. So what options do I have?

I had a shower today. Let me tell you, that was a frickin feat. It took all day of resting up and lying flat to even attempt it, and only because I couldn’t stand the idea of laying in my own filth another day and dealing my greasy, itchy hair any longer. Also I figure I may end up in the ER (again) tomorrow and didn’t want to overwhelm the nurses with it. I decided a 5 minute shower was worth the agonizing pain in my head that feels like someone is shoving hot pokers through my eyes. Getting up to go to the bathroom is something that takes preparation. No just sitting up and walking for me! Nope. Got to oh so slowly, inch my way into an upright posture. Then wait for the worst of the blades to ease so that I can as quickly as possible stumble to the toilet and quickly lay back down. Of course laying down has it’s problems. Ever lie down (flat mind you, not reclined) for four straight days? Backs do not like this. Neither do necks. And since mine is already in pain most of the time it’s now just another level of pain. But what the hell….. what’s more pain to someone who basically lives in pain the majority of their lives?

I fear that this is the thinking of my doctors. So there’s a 40% chance that the procedure could result in up to 9 months of debilitating headaches? There’s still a 60% chance that it won’t! And they might get a possible answer! I mean, 30% of people with the diseases they are checking for have a negative test result. But what if?!?! It’s nothing to them anyways. They don’t really care if I have to miss another week of work. Just deal with it, they tell me. Because they are the doctors. They know all and can do no wrong! (Cue the sad superhero music.)

So here I am. In the 40% with debilitating pain. I hope the doctors are comfortable with themselves. I hope they have had a wonderful weekend. I hope they are secure in their insistence that I do that procedure. I hope that they are happy. I hope they rot in their self-righteous bullshit. Because I don’t know what I’m going to do at this point. Eventually this will go away. But what about until then? What exactly am I supposed to do? Deal with it, apparently.

Reminders of “Not Normal”

The past week has been full of reminders. Reminders that I’m not “normal” yet, reminders that I still have to take it easy, reminders that even if I feel ok my brain isn’t necessarily on the same track. After feeling more like the old me for a few weeks I had almost succeeded in believing that maybe it was all in my head! Forget about the brain lesions and the blood results, maybe they can be chocked up to human heterogeneity? But no.

The past week has been full of reminders. Reminders that I’m not “normal” yet, reminders that I still have to take it easy, reminders that even if I feel ok my brain isn’t necessarily on the same track. After feeling more like the old me for a few weeks I had almost succeeded in believing that maybe it was all in my head! Forget about the brain lesions and the blood results, maybe they can be chocked up to human heterogeneity? But no. What I had forgotten was that the reason I was feeling better was because I had taken great steps towards maintaining my mental health. I worked hard at not getting stressed, at taking what life threw at me and taking in in stride. It’s amazing how your perspective changes after almost dying. Petty things like annoying people and deadlines mean a lot less when considering that at least you’re around to experience them.

So it took me by surprise when after experiencing a bout of manic anxiety, I was sitting at lunch when my hands decided that holding a sandwich was way too much to ask of them. Followed by the inability to pick up and put back together the rather messy aftermath of the deconstructed lunch. Eventually I was able to triangulate my hands enough to finish my meal, of course I looked like a toddler with sauce all over my top.

The day was scheduled as a mini shopping trip, and no silly shaking hands were going to mess up my plans. After walking up half a flight of stairs I realized my great error. My legs were weak, heart racing, the room was spinning and I couldn’t get my breath. And I was stuck. Between two floors on the stairs. That was a fun walk back down. We headed out hoping that I could make it far enough to the coffee shop down the block to sit for a bit. I barely made it. I barely made it one block. I had to hold onto my friend while holding myself up along the shop walls as the marionette that used to be my body was controlled by something other than myself. Sitting didn’t help much, but I made it to the car. While riding back home the world started closing in and the taste and smell of metal overwhelmed me. Luckily I know that feeling and held off the impending syncope.

Brain fog prevailed for the next few days and I think I slept about 14hrs straight. The weekend was filled with a lot of sleep and the inability to leave the house. Monday dictated a full day of work and while I did it I don’t remember a whole lot of it. I had forgotten how much I pay for overdoing it. People commented on how red my face was and that I wasn’t responding when they spoke to me.

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Kira was a little worried

Yesterday (almost a week after the initial incident) I was exhausted after doing too much. I still decided to try and finish the experiment I had spent all day working on. As I sat in front of the microscope I realized I had no idea what to do. How many times have I taken images on the microscope? And for the life of me I couldn’t remember what buttons to push or levers to pull. Finally giving up I went home.

Sheepishly going to the post-doc in the lab the next day I admitted to not doing the experiment right. I decided to try one last time to take some images and managed to turn the scope on! Woohoo!

Did you know that to take an image of cells with fluorescence you have to actually add some sort of stain to the cells? Or how about that to take an image you have to actually turn the camera on? When I asked the post-doc how to turn the camera on she gave me the funniest look and said “you press the button.” I had pressed the button, just not long enough apparently. It never occurred to me to try holding the button. She left and I continued muddling through. Also, did you know that you have to open the shutter to see anything? After getting the post-doc again because I couldn’t see anything she informs me that I need to open the shutter. “How?” I ask. Again she had the strangest expression on her face, Looking back I know she knew I had closed the shutter to switch to camera just two seconds before. Little did she understand that I had no recollection of doing so and could not for the life of me remember how to do anything with the shutter, let alone what the shutter actually is. Finally I took a few images. Woo.

I looked in the mirror after getting home and was a little shocked. My face was a red, greasy mask, my eyes were dull, my hair was lank. All the health I had gained in the past few months seemed depleted. And I remembered. I remembered that to function I have to plan everything and stick to it. I remembered that brain fog is a real thing, that sometimes I will still lose time. I remembered the toll of letting life get the better of me, and that sometimes I have to just let stuff slide off my back. I remembered that in fact, I’m not normal. That my body is still healing and may never be what it was. And I remembered that I still have to get better.

What it’s like to be poisoned in the 21st century

Ah the joys of medicine in 2016. Should be amazing, right? Try being shuffled from doctor to doctor. Never getting an actual diagnosis. Always being told “this just isn’t my specialty, you should see X.” Meanwhile you’re in CONSTANT pain, still lose time, can’t think the way you used to and certainly let’s not forget the FANTASTIC panic attacks that take over your day at the mere hint of the “poisoner” and debilitating exhaustion.

Ah the joys of medicine in 2016. Should be amazing, right? Try being shuffled from doctor to doctor. Never getting an actual diagnosis. Always being told “this just isn’t my specialty, you should see X.” Meanwhile you’re in CONSTANT pain, still lose time, can’t think the way you used to and certainly let’s not forget the FANTASTIC panic attacks that take over your day at the mere hint of the “poisoner” and debilitating exhaustion.

But doctors…… doctors don’t want to touch you. What if what THEY do has an adverse effect on the arsenic damage?! Better to let you live on the point of breaking. Much better than helping someone.

How did this happen?……. You may be asking. I’ll be posting the lovely steps in my journey through arsenic poisoning and how I’m getting past it and rebuilding my life.

The beginning….

Looking back the symptoms started far earlier than expected. For month’s I’d been going through mild muscle spasms, general pain and tiredness. I can clearly remember sitting at a microscope and cussing out my hand after it randomly gouged through an agar worm plate.

Looking back the symptoms started far earlier than expected. For month’s I’d been going through mild muscle spasms, general pain and tiredness. I can clearly remember sitting at a microscope and cussing out my hand after it randomly gouged through an agar worm plate. (In science we have the opportunity to work with many types of model organisms. Strangely, worms are one of them! We culture them in little dishes and feed them bacteria. Worms do wormy things and given the opportunity to wriggle into small spaces will happily take that chance. Large gouges in their agar homes make for difficult extraction later.)

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DNA image of wild type nematode. © 2015 Megan Kailani Fentress

Given the difficulty I was having in the basics of culturing worms and the pain I was experiencing from sitting at the scope I decided worms were not my organism. From there I went through a couple of organisms and finally finished in mice.

I’d like to preframe this by saying  I NEVER though I would work with mice. Raised as a hippie I wouldn’t hurt another being on purpose. It’s amazing how the scientific field can create interesting situational ethics…. more on that later……

The muscle cramps continued for months. Mostly small at first. They gradually got worse, I began to be awoken in the middle of the night by “charlie horses” in my neck. Now try to imagine this….. Have you ever had a “charlie horse” in your calf? Imagine that IN YOUR NECK. Yep. That much fun. Needless to say sleeping didn’t work very well.

Really the whole thing fell down around my ankles in January of 2015. One morning I woke up as usual. Got some coffee. Noticed my neck was hurting and I was tired from yet another night of pain. And then suddenly I couldn’t breathe. My back had spasmed and turned me into a hunchback. I could no more have straightened my spine than flown across the continent. And the PAIN!!!!! It took my breath away.

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My wonderful mom and the amazing puppy (ok she’s technically a senior dog).

Luckily my Mom was there for the holidays. Without her I’m not sure how I would have survived the experience. I was in so much pain and so curled up with muscle spasms that I couldn’t have reached the phone. I was lucky. She managed to get an emergency appointment with a neurologist and somehow piled me into the car and drove me to her.

I truly believe that without the help of my mother I would be dead right now.