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.