Thursday, May 28, 2015

EDS and PMS (heh.)

Things that don't occur when you don't have chronic pain/Ehlers Danlos Syndrome: already atrociously bad PMS pain increases x2390583409853098. 

Who do you see when this happens? A reproductive endocrinologist, duh. (A subcategory of GYN--also its own mindfuck.) Don't feel bad if you don't know this--I didn't either. 

I started noticing over the last 6 months, I was starting to have a serious increase in pain, nausea, dizziness around my 10 day mark, 5 day mark and 3 day mark (I know, specific.) . It would always foil my plans of exercising, doing errands, attempting to live like a somewhat normal human being, etc. 

Ironically, like I'm finding with most things, most of my "hunches" (and maybe what peers and naive observers would consider "hypochondriacal observations") turned out of course to be a real thing, like usual. After aggressively researching and consulting with reproductive endocrinologist, I found that progesterone is a hormone that loosens the joint, understandably, for childbirth--and it's what has been aggressively fucking me over (for lack of a better phrase) for months. 

(Side note: after some research and phone calls, I found out who all the (slight sarcasm) reproductive endocrinologists were in the area and one was the father of a good acquaintance from high school--who no doubt, wants to be in fashion design. In exchange for some advice, I got an apportionment within a week for what usually takes months! It's all about the craftiness, people. And proof that knowing a thing or two about fashion does come in handy in very odd scenarios periodically--no pun intended.)

Anyway, for all the information I overloaded this poor doctor with, he was incredibly sweet, accommodating (and like most new doctors who are totally shocked how self aware I am and the depth of my knowledge on this particular subject), mildly overwhelmed. His first comment after my 15 minute long spiel about me and my mother's conspiracy theory about progesterone, EDS and all over my shitty metabolic reactions to medication/birth control, his first comment was simple and something I totally missed...because when you're so detail oriented you miss the big picture.

Him: "Well do you even want or need a period?"
Me: (Without thinking twice about what was about to come out of my damn mouth) "HA.. NO! I would have a hysterectomy if I knew I didn't want or couldn't have kids in a heartbeat!" 

Ah, the plight of an oversharer. 

He explained to me that I could change my Nuvaring every 3 weeks and use a new one right away to skip all the wild hormone spikes I was desperately trying to adapt to. Hopefully just exchanging it after 3 weeks instead of for will keep everything stable and I'll never need to deal with periods ever again. And, bonus points, I don't have to go off of my birth control!

His back up plan: a Lupron Depot injection which is pretty much an injection that shuts down your ovaries and uterus for about 6 months aka a temporary hysterectomy. Seems terrifying. 

The catch? Instead of PMS pain, you get to become menopausal at the ripe age of 25! Hard pass on that one. Explaining hot flashes on a first date is something I just can't mentally handle right now. And I am trying my best not to screw myself over before I leave for London WHICH AS OF NOW IS SEPTEMBER 6! 

One step closer...

Friday, May 22, 2015

My Shitty Experience With Taking Drugs for Pain (As Told Through Chronic Illness Cat Memes)

Over the last two years, I've made it pretty clear that I have a love/hate (pretty much all hate and no love) relationship with drugs.

Not sure why my body hates me, but like everything else, it's something I'm slowly getting to the bottom of.

Just in the last year and a half, these most of the drugs I've tried. (Please note under any normal circumstance would I ever be posting my drug medical history, but a lot of people with fibromyalgia/EDS/MPS/MCAD --everything I have-- usually has sensitivities and intolerances to a lot of things.)

Drugs with an * behind them show that I had side effects. Drugs with multiple * mean I probably thought I was dying. 
Side note: I was dumb and didn't write down what they were. 
If they are on the list without an * it means they didn't give me side effects but didn't help.

*Note: I know some of these are not in the right categories. I took this right from the notes in my phone.

Anti inflammatory:
Flector patch

Muscle relaxers:

Ativan* tolerance

Sleeping pills:
Lunesta *
Ambien - 10 mg with phenergan 50 mg

Anti nausea:
Phenergan- must eat with food, 50 mg in combo with ambien 10 mg

Pain killers:
Vicodin *****
Nucynta ****

Zoloft *
Lexapro *
Prozac *

Medrol dosepak
Capsaicin cream

So, doctor friends/family (or anyone with common sense), you can start see the relationship of general categories that weren't working my favor. I know there are more drugs to add, I just can't even remember what they are. I have irrational fears about going to the ER because doctors will probably just give me painkillers anyway. My PCP has actually told me when I need to go to the ER I shouldn't go to the ER.

As I'm sure you can sense from this list, I don't really have much to take in the way of pain at all. Especially break through pain. These are the questions I am asked the most about. The only things I can take and try to take as little as possible are Toradol (an intense NSAID that rots in your GI tract--I get LECTURES FROM EVERYONE about taking this--you're not supposed to use it for longer than 5 days after surgery), Ativan (which I previously had a mild addiction/withdrawal from) and Robaxin. The last two I take in conjunction with Ibuprofen. Most of the time, these kind of take the edge of. 

With really bad pain, nothing does. And trust me, there have been times in nights of desperation with really bad that I'm almost desperate enough to try more painkillers but ultimately logic strikes and pass on it. I end up just trying to drug myself enough to pass out. This seems like the best solution (other than throwing myself off a bridge or trying to convince someone to take a hammer to my head).

I have a whole pharmacy of drugs at my house. 

I have a several giant boxes of all the drugs I've tried. Slowly I'm starting to get rid of all of them. Or do this. (Because I think it'd be hilarious.)

I also use heat/cold, China Gel, TENS unit, compression wear, a custom pain salve made from essential oils, trigger point/foam rollers, my U shape body pillow, epsom salt baths, food (hence the weight gain), etc. (Almost all these things can be found through various posts with links on my site.)

You may be asking yourself "Erica, were painkillers really that bad?" and my answer to that would be "Yes, yes they were." Here's a few things that would happen when I took pain killers or antidepressants:
  1. extreme nausea 
  2. perpetual vomiting 
  3. throat closing/trouble breathing
  4. rashes
  5. hives
  6. rapid heart beat
  7. extreme dizziness (to the point that I couldn't stand)
  8. feel like bugs were crawling all over me
  9. ridiculously bad IBS
  10. more spasms
  11. dry mouth
  12. blurred vision
  13. headaches
  14. night sweats/nightmares
When I went to see my geneticist at GBMC, we could tell some of these were allergic reactions and some were something else, so she ordered me a Genelex Youscript Test. It's a pricey one, but luckily my insurance covered it. It's a swab cheek test that analyzes how well you metabolize certain drugs. It's very confusing to read, even for most doctors but a lot of the reps there are very good at explaining to the least science-y person ever. But, no surprise, I was an "intermediate metabolizer"/slow metabolizer for the phenotype that includes many painkillers and antidepressants. According to the Youscript site, this is the definition of an intermediate metabolizer:

  • Intermediate Metabolizer. An intermediate-metabolizing enzyme is considered to be less active. It doesn’t break down a drug as completely as a normal metabolizer, which means you might require a lower dose. A lower dose prevents the unmetabolized drug from building up in your body and possibly causing side effects.
  • Poor Metabolizer. A poor-metabolizing enzyme has very low activity. It is possible to have side effects even with a very low drug dose, because the enzyme is very slow to break down the drug.

Generally, once most doctors find out you're an intermediate metabolizer  (if they even know WTF it means) they will never prescribe any drugs that fall into that category. It's hard based off the information they give you form the results to figure out what are intermediate metabolizers and what aren't. The service from for Youscript told me with my results, if I took something that was an intermediate metabolizer for me over a decent period of time, most of the drug would stay in my system since it wouldn't be digested and become toxic to me, even resulting a potential stroke. Now I have software by Youscript where I can plug in all my meds I'm on with the meds I want to try and see if there are interactions or if they a bad metabolizer for me. It's getting to be a little too much fun for me. 

Having the kind of pain I have with no meds is really hard sometimes. I have to go the "natural" way out of force. Most people that have the same diagnosis and pain I have are on SERIOUS meds (like morphine 24/7). If I had drugs that worked my days would be a lot less limited and I wouldn't have nearly as many sleeping problems if I had something to help my pain at night. Then, I wouldn't need to be on Ambien. I'm at the point where I've pretty much tried everything and not much is left except medical marijuana, which although I am not a smoker, I would try it if it helped. I am willing to try anything as long as it doesn't kill me. 

I am also looking into a Butrans patch. It is an opiate but it would be a patch so it would enter through skin systemically. I wouldn't be *thrilled* about being in pain killers 24/7 like I would with this patch, but I really think, if it actually helps, it would improve my quality of life. I don't really have much of one right now, so I'm still really trying. 

One thing I am very excited about is a product called Quell I ordered. It is a wearable pain relief system that you wear around the top of your calf. It uses some kind of neurotechnology to send signals to the brain through electric waves to change your pain path. There's a chance it wouldn't work, but it's worth trying. It can even tell when you're sleeping and you can adjust accordingly with a compatible iPhone app. Hopefully it'll arrive in June! 

PS. I found this "chronic pain workout" and I really enjoyed it, so I am sharing it here.

Thursday, May 21, 2015

Moral of the Story: Don't be a dick.

In the last day or so, a friend of a friend of a friend (I know, long connection) reached out because she was concerned she may have EDS and needed someone to talk to. So, I gave her some advice and sent her a few links to things I thought may be helpful. She decided to post one of the links I sent on her site and asked a follow up question regarding one of the questions. After I wrote my feedback, one of her friends wrote back on it "Hypochondriac, yes."

(This is the link--it actually is helpful, but poorly translated from a Chilean rheumatologist.Yes, some of it is probably a little bit of a stretch but a lot of things on this site I was examined for by my geneticist. It is pretty legit.

Let me just say, I never purposefully try to come across as a bitch. But once shots are fired and when it comes to my medical conditions, I will verbally rip you apart. I have mentally and physically undergone too much shit to just sit here while people go on thinking nothing they say has repercussions or comes across as offensive to people.

I know I'm sensitive to this kind of stuff and whether people know or not they are fueling a fire within me, I just can't help but think what kind of a person you are if you feel the need to comment on a Facebook friend's post about a life-altering condition and make her (or me) feel even shittier about it.

I'm not sure how comfortable I would ever be with sharing my medical conditions on Facebook..(I don't feel like it's most of my FB friends' business and they aren't entitled to know. I write my blog for friends/family and other people with chronic pain. It's all I care about. I don't feel like someone I haven't talked to from high school needs to know what's happening to me.)

But, I feel like mocking someone with a painful condition is just about one of the douchiest things you can do so I have no problem being mean to someone who genuinely deserves be called out. Don't get me wrong, I genuinely try to make an effort to be nice to people (even people I don't like) and I never try to "start" anything but kindness has its limits and so do I.

Maybe that person will think twice about what they say to people. I am the first to admit I can be a bit hot headed and sometimes am a little too excited when I come out of an argument with my opponent in tears, but seriously people, back off. (I am also in the midst of a ridiculous flare that I've had the last few days, so that knocks any tolerance I would've had to this BS out the window.)

Noted to all non-chronic pain sufferers: do not f*&$ with someone in pain. It won't end well for you. I've seen it happen to other people from chronic pain people. We are not a group to be messed with. 

I went to fashion school, I have a tough skin and I'm used to dealing with petty people so I can shake it off but I can't help but feel bad for this poor girl and watch her experience (as a relatively new chronic pain sufferer) and see someone be so mean for no reason for something she's really struggling with. When I first started having pain, I was so beside myself and feeling so vulnerable that I would just break down crying every time I felt like someone slighted me with their ignorance.

Maybe I'm in the process and stages of grieving with what's happened to me, but I don't think I'll ever be the kind of person to just brush people off without putting my two cents in first.

I feel like the moral of every social related post I've been writing lately has been "Don't be a dick." but somehow it just keeps happening. Ain't nobody got time for that.

I also apologize if this post was slightly aggressive. I could blame it on drugs, but that would be a lie. I swear some people just bring out the crazy.

PS. I plan on getting a new opiate patch tomorrow when I get injections which could either miraculously help me or send me to the ER, but what else is new? Such is life. 

Wednesday, May 20, 2015

Sunday, May 17, 2015

Why Telling Someone Who's Sick "It's like you're on vacation." Is Never Okay

Ah, the naïveté of the "normal".

First, let me just say that referring to my (or anyone else's for that matter) medical leave as "getting a break" or "being on vacation" is straight up dumb. To the outsider, I'm sure it seems like I'm probably doing nothing all the time, but it is quite the contrary.

I would love to be on vacation. But guess what? Even when I would get a vacation, I don't think I would ever actually be on one, if that makes sense. I would love to temporarily (or permanently, obvs) remove myself from my pain and perpetuating factors to actually relax, enjoy myself and not feel uncomfortable. That would be awesome. When I will fly to London, I will now have a wheelchair, special accommodations and seating, extra drugs, carry ons, etc. Planning this flight alone has been exhausting/pain in the ass.

Like today, for example, my pain and GI issues were so bad that I have been nauseous, dizzy and spasming all day. I heard the weather was nice. I wouldn't know since I didn't get to leave the house. And more often than not, this happens pretty frequently. And, like I've said many times before, I have pretty much no medication to help with my pain.

"Normal" people---when you have the worst kind of flu for 2 weeks, do you truly feel like you got a break or had a vacation? I would imagine between the fatigue, muscle aches, nausea/vomiting, fevers, etc. that you would probably say no. Keep that in mind when you're talking to someone with chronic pain.

To be honest, through all the hard work I put in before having to move home--between working, school, internships, etc. this is single-handedly the most exhausting full time job I've ever had. Even things that used to be enjoyable (ie. going out with friends, actual vacations, dating) are just stressful and generally miserable. Most of the time, physically, I am miserable.

Rant over.

Thursday, May 7, 2015

A Formal Goodbye to All the Heels I'll Never Wear

It's important to know that as a former fashion student, future fashion student and all-around passionate shopper, shoes are everything to me. I'm 5'10" but I could strut with the best of them in college. I wore the highest needle point stilettos I could get my hands on. I had strong, deep physical and emotional reactions to seeing shoes I loved. I think maybe in another life I would've been a shoe designer. I prided myself on always having wonderful heels. I never even owned non-athletic sneakers until I was on disability.

Guys, this is crushing my soul. And as much as I tried to make it work with me and heels, as many outfits as I would love to plan on wearing in London, every time I put on a heel, it just kills me. Pain shoots up my body. I can't move for the rest of the day. I can barely even walk in heels now. I am being semi felicitous and purposefully overdramatic but it is one of the little things I have to adjust to.   Sadly I still want to buy them all the time but I know practically they are of no used to me anymore. Guess it's just flats, boots and sandals for me now.


Here's a nice little list of all the dream heels I used to tell myself when I had the salary I would buy eventually. 

The French Lover Suede Sandal by Aquazzura

So Kate Blush #2 by Christian Louboutin 


Nicholas Kirkwood for Erdem

3.1 Phillip Lim

Dolce & Gabbana


Rem Koolhaus

Roland Mouret


Jimmy Choo

Sergio Rossi

Giuseppe Zanotti
Giuseppe Zanotti

Goodbye heels! I feel like I miss you and I don't even know you--the nights we could've had, the outfits you would've made me like an HBIC in, the blisters I could've hated you for, the men we would've towered over. It would've been real--real fun. Maybe someday we can be together again. 

I was going to make this into a love sonnet, but not even I have time for that.