Rare Disease Awareness Day 2013

It’s been a while since I last wrote and life has been hectic! I went back to work after 9 weeks off and 8 weeks of maternity leave. I wish more than anything that I could have afforded to take more time off, and my amazing husband encouraged me to do it anyway, but I just decided to bite the bullet and go back now. I have been missing my little man like CRAZY, so being home with him today is so nice. I really needed this. I’ve been continuing with my physical therapy, going from two days a week to one day a week. I thought that maybe this would make it a bit easier on my body, but it has actually made it harder… especially because I don’t always have time to do my exercises at home. So, yesterday I got my butt kicked for sure! There have definitely been some adverse effects on my body as a result, but I’m trying to keep in mind that pain like this can mean that more and more weakness is leaving my body. It’s not easy continuing to think that way though. It’s especially hard when it’s hard to pick up, hold, and/or play with my little booger. Honestly, today, the pain meds are really barely touching it. So, I’m trying to take it a little bit easy, but I do have some catching up to do around the house. Fortunately, I have the best husband ever. Last night, after I got the little man to bed, the hubby sat me down and told me that I really need to delegate to him more at home; he does want to help, but I just keep trying to do all that I was doing while I was on maternity leave. Only now, I’m trying to do it all after I’ve also worked. Fortunately, I am only working part time, but that still leave a WHOLE lot of time to get stuff done and spend time with C after all is said and done. So today I’m playing catch up, but tomorrow we’re gonna tag team it!

Now… onto all thing EDS and POTS, etc…

February 25th was Rare Disease Awareness Day for those of you who didn’t know. And even the White House issued a statement!

I found this encouraging. It’s nice to have even small recognition.

In light of Rare Disease Awareness Day, I would like to talk about SSD. Somatic Symptoms Disorders. This is a group of diagnoses that are scheduled to be in the new version of the DSM. (DSM-V) If you don’t know what the DSM is, it is a diagnostic manual used mainly by the APA (American Psychological Association) and the DSM-V has been in the works for years now. Well, the jist is that this new addition to the DSM can and will make it harder for people who are truly suffering from chronic pain or an unknown/rare condition that causes chronic pain to actually be properly diagnosed. The actual goal is that this new criteria will actually make it easier for doctors to understand diagnostic criteria for mental disorders, versus a serious physical problem. However, it is my opinion that this will simply give some of those lazier doctors out there an excuse to brush off problematic and symptomatic patients. As someone who was labeled to have a hypochondriacal neuroses, this whole situation makes me very nervous for medical zebras out there.

All of that may have been a bit confusing, and honestly, the whole thing kind of is confusing. This article might explain everything a little better:

http://abcnews.go.com/Health/somatic-syndrome-disorder-mislabel-sick-mentally-ill/story?id=18606406

Does that make a little more sense? Do you see why I am so nervous? I’m sure there are several of you out there who have been brushed off by doc for this reason or that. I, myself have also even been told that I’m just depressed, or that I have anxiety and depression. This isn’t fun! Especially when you know that something isn’t right with your body. I’m sure that sometimes there are some instances when SSD might actually be the appropriate diagnosis. However, I truly believe that “rare” diseases/disorders, such as POTS and EDS aren’t really all that rare. I think that they are simply under- or misdiagnosed.

A lot of times, I think about it like ASD (Autism Spectrum Disorder), Asperger’s, and any other type of Autism. Years and years ago, it was thought to be incredibly rare. Now, with more and more diagnoses of Autism, people have started to look to several things to blame for the seemingly more frequent occurrence of Autism, such as vaccinations, nutrition during pregnancy, nutrition in the child after birth, and so much more. But has anyone ever stopped to think that we simply know more now? We know how to identify Autism now. In fact, we know how to start recognizing signs of Autism in younger and younger children. This doesn’t mean that Autism is actually becoming more and more frequent in children… it is actually just being identified more effectively. Before it was identifiable, folks who actually had Autism would have been diagnosed simply as “mentally ill”.

I believe that in years to come, the same could ring true for POTS, EDS, and so many other conditions that are seemingly “rare”. Maybe, just maybe, the diagnosis is the thing that is actually rare.

Well, that’s my spiel for the day. I hope you all have a wonderful weekend and that I’ve left you with something to think about until I post again!

Zebra hugs and love!

Ashley 🙂

Big zebras don’t cry

As I have mentioned in previous posts, my EDS pain post partum has been fairly intense. I’ve written about the pain in my shoulders, but really, my whole body has been a bit of a mess. I guess this should be no surprise, since I did just have a baby 7 weeks ago, but I have been feeling as though it is so much more than that. My wonderful doctor has been great in these past few weeks about wanting to help manage my pain, and referred me back to physical therapy, after giving me a few meds for pain (they ARE rated safe for breast feeding… as safe as you can get) and advice on baby wearing. One of the meds my doctor gave me is one that I have taken before, another one is new; she asked me if I needed a refill on one that she had given me right after birth for post partum pain, but I thought I would be fine, so I said no. I was oh, so wrong. The two meds she gave me were barely touching the pain on their own. It was brutal; so yesterday, when I saw her for a follow up, I was going back and forth in my head as to whether or not I should ask her for a refill on it. I was so scared to ask her. See… we zebras have a high pain tolerance. We don’t really cry when we get hurt, and usually we just laugh at the monotony of the situation because for someone who has EDS, “getting hurt”  isn’t really news; chances are, we’ve felt that pain before. That’s why, when walking into my doctor’s office, I was scared to ask her for a refill on that one medication. I felt like I should be crying or showing one of the standard “faces of pain” – you know… the little chart on the walls in hospitals and doctor’s offices that help them determine how much pain you’re in –  like a normal person. But I don’t really cry when I hurt. In fact, I don’t usually even show it in my facial expressions when I’m in pain. If I do cry when I hurt, it’s more from the frustration and/or exhaustion caused by more pain in my life. Again. So because I don’t really show pain emotionally or through my facial expressions, there was that fear that doc would assume that I was just a drug seeker trying to get my “fix”. (I can’t tell you how many times I have been told that ibuprofen or tylenol should “cover it”. And if that doesn’t work, I should “be used to the pain by now, right?”. Sure, sure. Asshat. – excuse my language.) Thankfully, my doctor didn’t even go there! I guess that’s one advantage of (for the first time in my life) having a doctor who believes me and believes (and understands) my pain. Instead of making me feel badly and telling me that I should get used to it or get over it, the good ol’ doc asked me a question I never expected to hear! “Okay! So… how many do you think you would use in a year? I mean… that’s just much easier, right?” I was flabbergasted! But walking out of there knowing that I have a doctor on my side, who believes me and trusts that I really do know my body and my pain… that feeling was priceless.

Now… being a mommy puts a whole new spin on this whole pain and pain management situation, especially because it involves pain medication. As a mommy (and I’m sure all of the daddy zebras can relate), having a condition that involves chronic pain is HIGHLY inconvenient. This is mostly because there is just no time to be in pain or focus on damaged joints. Your baby (or in many of my EDS friends’ cases, babIES) need you! Right now, my biggest concern is nursing. While my doctor has assured me that all of the medication I am taking is safe for baby C, I do know that the FDA has stated that no medication has actually been determined to be safe during pregnancy, so my brain tells me that the same goes for breastfeeding. So, if you’re thinking about it, I don’t need the lecture. I already feel guilty enough for giving my needs a priority, but I’m realizing that I AM important too. I don’t need you to judge me or make me feel worse, so keep it to yourself. While breastfeeding and caring for my one baby is my concern, so many of my friends have several babies (granted, they are mostly bigger “babies”).

These friends of mine are facing so much more than just the daily struggle with their own pain; they have to worry about the struggle with pain that their children have to face. Many (if not most) of my EDS friends have children who also have EDS and/or other disorders. Because EDS appears to be genetic – not all families are able to trace it back to diagnoses in previous generations – I definitely worry constantly that my own baby could inherit POTS or EDS or both from me. For my friends, this worry is in their faces every day! It’s their reality. I can’t even handle it when my little boy cries just because he wants his binky… I can’t imagine what it would be like to see him go through the same pain that I do. These parents put their pain on the back burner, and I have noticed that it doesn’t come back to the surface until it’s too late to be proactive. Many, many times, I have seen these friends of mine literally get knocked on their asses.

Let me make things clear; mommies and daddies are not the only ones who push their pain down. Oh, no. All zebras do it. I mean, come on, no one believes in an illness that can’t be seen. Now, I love old people – Haha! Maybe that sounds weird. I hope where I’m going with this doesn’t offend too many, but if it does… well, just don’t read my blog anymore. Whatever. Let me continue… I love old people, but they usually are the ones to say the things that drive me craziest! I shall explain. Old people want us to appreciate and enjoy our youth. They are wiser and more experienced, and they know what’s coming for us, even if we don’t. Seriously… chances are that they really have “been there, done that”! This is something that I sincerely understand. But the thing that drives me the craziest; the one thing that sort of pierces my heart and makes me wanna slap an old lady is when I hear, “Oh, you healthy young people with your youth! You just can’t understand the aches and pains of us old people” or “Well… you don’t know what it’s like. You’re young and healthy!” It sincerely takes everything I have in me not to grab that person and shake him or her and scream “I hurt every day of my life! Healthy, my eye! I would love to only have aches and pains in my ‘golden years’! But I’m not so lucky!” There are so many times that I want to scream about the pain that my friends are in, because let’s face it, I’m one of the lucky ones! I can still get around on my own; I can still leave my house and work. Many of my friends just don’t get to do that.

But big Zebras don’t cry.

So I keep my mouth shut and silently curse the “healthy young people” with all of their youthfulness and whatnot. 😉

Let’s talk about physical therapy.

Today was my first session back in physical therapy with my wonderful, wonderful physical therapist. This woman worked so hard with me throughout my pregnancy to make sure that I was strengthening weak ligaments without hurting myself more, and really worked to understand the relationship between EDS and my ligaments and my pregnancy. So, today I walked in, hoping that I had done enough work to avoid throwing things off TOO much through childbirth and in these weeks post partum. However, my pain told me that reality was likely the opposite. And the latter was true. As it turns out baby C “did a number on ya!” Yeah… I thought so. On one hand, I was bummed to hear that there is a lot of work ahead of me. On the other hand, it was kind of nice to once again be validated in my pain. And on one foot (since I’m out of hands at this point), I was glad that I worked so hard during pregnancy. I just keep thinking about how much worse it could be if I had never attempted to strengthen my joints! According to the lovely A, my spine and hips are pretty unaligned; my sacrum is rotated; and my shoulders are slipping forward, with one extremely stiff and the other on the verge of dislocation. Beautiful, isn’t it? 😉 Needless to say, I got my butt kicked a little bit today. But it’s okay. I love that burn that comes with knowing that I am getting stronger!

Alright… well… my hands and wrists are giving me fits and that makes it tough to type, so that’s it for today!

Still… Life is beautiful, even when my body hurts. And THAT is why big Zebras don’t cry.

 

Much love and Zebra hugs! “See” you next time 🙂

Showing my Stripes

So… It’s been about a month since I last wrote and I apologize for the delay! I have so many ideas that I want to share with you all, but I have had very little energy with which to do it… So… First I will jot a little update for you all.

This past month has not been without its difficulties (physically).

I’ve been putting up with a troublesome shoulder that finally gave out on me. Allow me to explain…

A few months ago, I was out at the local ice rink, working a shift for one of those lovely folks who runs it. I reached for a bin of ice skates, and I hear this awful popping sound and feel this hot, excruciating pain… My left shoulder went out. Now… It didn’t seem so bad at the time – perhaps because I was panicked that this happened in public – so I just popped it right back in. Over the next two months, I realized that it gone out much more than I had realized at the time, as it proceeded to click and pop in the joint every time I moved my arm away from my body. Obviously, I was not thrilled.

Fast forward to a few weeks ago…

The clicking and popping on my shoulder was starting to be accompanied by pain, but still… Without any health insurance to speak of, it was nothing I couldn’t handle. Until one day when I was sitting at work and just minding my own business and the phone rang. My phone sits on my right and I talk on the phone with my left hand. So… As I always do… I reached my left arm across my body to pick up the phone, when I heard a NASTY <crack! It was awful! Pain instantly shot through my entire arm, all the way down to my finger tips. All I wanted to do at that moment was cry out in pain… And release a few choice words into the atmosphere. I wrapped up my conversation on the phone, and then turned my attention to my shoulder. “Did you hear that!?”, I asked my co-worker, A. “No, but you’re pale. Are you okay?” “My shoulder popped!” A had known about the trouble I had been having with my shoulder, since she was working with me at the ice rink on the day that it went out and started causing me trouble. I tried to move my arm around and see if I could relieve any of the pain in my shoulder. Nothing helped; every movement was followed by a deep and painful popping in my joint. Great, I don’t have insurance. What am I gonna freaking do now? I was so mad at myself for not being more careful! Then again, I was just answering the phone! Ugh!

Over the next week or so, I started to experience more and more pain in my shoulder and started to realize the limited use I had. Finally, when I was sitting on the couch one afternoon and sobbing from the sudden and intense wave of pain shooting through my arm, I decided that it was time to ask for help. I called various clinics around town, and was disappointed to learn that we don’t have a single free clinic. Once, I was even laughed at when I asked. Finally, I was on the line with an urgent care clinic, and found someone kind to speak with. After explaining my situation, I was encouraged to come in and apply for the discount card program that they were offering. After running around town a bit to jump through all of the necessary hoops, I was in an office, sitting down with a very kind man and filling out paperwork. Bless this man… He did everything he could to get me on the best plan possible, but I still barely qualified. He was so kind and he expressed his frustration in my defense. These people were simply wonderful and I was so relieved to be there!

Finally, I was being called to see the doctor. The nurse checked me in, recorded all of my meds (I think he ran out of room) 😉 and then left me to wait for the doc. Sitting there, waiting, my heart began to race. The last time I tried to explain EDS to a doctor, he told me I was just depressed and maybe needed therapy. I was suddenly very nervous! The doctor entered. He was young. Very young. I mean… I know I look young, but… I felt like I could have been his older sister. He looked REALLY young. I could tell that he was also new. I started explaining my situation and said “EDS type 3, hypermobility type.” “I don’t know what that is.” My heart sank. “It’s Ehlers-Danlos Syndrome”, I explained. “Oh! I have a friend who has the classical type. Okay… Let’s take a look at you.” My heart jumped! Seriously!? I couldn’t believe it!!! In my little town!? Finally! This guy still didn’t know a whole lot about all of the small details of EDS, but he did know how to examine me properly, as opposed to someone without EDS. What was wonderful about this experience, was that he truly listened to me and understood that I definitely know more about my body than he does, and that I am the expert in this situation, being that I have more than one rare, chronic disorder. He felt around and took a listen and suddenly knew EXACTLY what was wrong.

“It sounds like the first time your shoulder went out a few months ago, it was a lot more severe than you thought and it never went all the way back into place. Since then, the bone has been grinding on the edge of the joint and weakening the bone and the muscle. When you reached across your body the way you did, you fractured a bone near your rotator cuff.”

Say what, now!? Now wonder it had been killing me! Now came the moment that seriously bummed me out…
As a patient with chronic pain and many other health problems, I am constantly searching for a doctor that is the “whole package”. Man… This guy was SO close. Until this happened…

“So, what should I do for pain? It’s pretty awful.” “Well, you should isolate like you have been, but I’m sending you withs a sling for a few days. Other than that, ice it, heat it and take ibuprofen and Advil.” “Well, I’ve been doing that, but it hasn’t been helping at all.” He just nodded his head. “Well, if you have EDS, you should pretty much be used to pain by now.” EXCUSE ME? I don’t remember how the rest of the conversation went. I just remember that he said he was making a note in case I had to come back, so that they would know my situation and how to examine me. Still, I was so disappointed. I remember saying one more thing before I left. “Do you have any other questions?” “Yes… Could you do me a favor? Please, please learn more about EDS. I know it’s rare and you may not see very many EDS patients, but no one here has ever even heard of it and I need help.” “Sure.”

So… For a few days I rocked that sling and MADE it look cute! It was frustrating and my shoulder is still weak, so I still have to be pretty cautious. But that meeting, though disappointing in the end, gave me hope. I was also a wake up call for me… Sort of a reminder that I really am that fragile. In fact, I got another small reminder just two days ago…

Not only are folks with EDS fragile, we have very poor proprioception. This is the awareness that one has of their body in relation to the world surrounding us. This is why EDS patients will, oftentimes, seem so clumsy. (I know that I have been my whole life.) So, this has lead to many stubbed toes, bruises on elbows from running into doorways, bruises on shins from walking into coffee tables, bruises on hips from locating desks, and bruises on my head from opening car doors on my face… Yes… It happens more often than you think it would.

So… Two days ago, I’m getting ready for work. I wasn’t running behind or anything; I was just doing my normal thing. I woke up, brushed my teeth, fixed my hair, went to the living room, turned on the lamp, turned around and ran into the kitty’s scratch post. Just my normal thing for the day. Oh… But this time I didn’t run into any furniture in the dark, on my way to the lamp. But still… I ran into the kitty’s scratch post. The base of this thing, though small, is terribly solid, and I whacked three smaller toes really good! In fact, it took me to the floor, holding my foot and trying not to yelp and wake up M. As I go to stand up, my blasted left shoulder pops again! Just dandy, right? Oh man… You have no idea. I hurry to finish getting ready, because NOW I’m running behind. As I am driving to work, I notice how much it’s hurting to push on the gas pedal. (my right foot contained the suffering toes – of course!) I make it to work, limp inside as quickly as I can, and start about my normal routine for the day. About an hour later, I notice how much my pinky toe is still throbbing. I look down to see that it is HUGE! I mean… Ridiculously huge! Great, I think. I broke it. I just know it. Of course I did! Sure enough… Two days later, it’s still desperately swollen, purple, black and green and buddy taped to the next toe. Yes, I still limp a bit, but I just call it my swagger.

The most upsetting thing about this? I got a new dress for Easter to match my really cute peep toe, silver heels! 😦 alas, I will live to wear the beautiful shoes another day, and my pedicure did survive. But still… Darn you, you blasted fragile body!!!!

Much love and Zebra hugs to all! Have a wonderful Easter and love each other! 🙂

Sweating my Stripes off!

Wow! It’s been so long since I last wrote! It has been hectic.

But I’m back! So…

I’m just going to jump right in here…

I work… I’m fortunate to be able to work. I’m lucky I can leave the house to work. So many people in my position, with these illnesses, are unable to leave the house for work, and many of them are unable to work altogether. Don’t even get me started on the SSDI process! – I’ll get to that later.

So I work… I wake up every morning at 4:30 and I’m at work before 6:00. Granted, it’s only a part time job, but it’s work. And I enjoy it! That’s probably all I could really ask for! But working while dealing with two illnesses still comes with its difficulties; even if I’m physically stronger than many of my friends.

You see… A lot of the time I’m a bit embarrassed about my illnesses. I just started my job back in October, so I haven’t been here for very long. Now, I have some decisions to make: tell everyone (probably one by one) about each illness – in detail; keep it all to myself and try to save up sick hours and work all of the extra shifts in case I need time off to go see a doctor or have a procedure done; or I can wait until a day when I’m sitting at work in so much pain that I need to go home and then try to explain with just enough, but not too much detail. It’s impossible. It’s frustrating. It’s embarrassing. I see the same 2 looks, but never from the same person. Look number one: “okay, so you’re not dying? Then get over it. That doesn’t sound that bad. It sounds made up.”  Look number two: “Your HEART doesn’t work!? You might pass out!? Oh dear god! Go! Go! Get out! Get better!”

As you might have imagined, both of these looks make me feel absolutely insane and usually right afterwards, I want to (or do) cry.

Now, you might be wondering why I would ever feel embarrassed. Well, first of all, I work at a Rec. Center, so the amount of physical activity I can survive is a little low and at times humiliating. Don’t get me wrong, I still work out and try very hard! Second, and yes this really happened, I have blacked out and smack my head on my desk. This hasn’t happened at my current job, but it did happen at my last office job. It was loud, my face turned red, my head turned purple and I got sent home. It was unbearably humiliating! Last… I have mentioned that I almost always feel pain, so I always have a heating pad with me, including at work. The number of questions and comments I get every day is incredible… “not feeling well?” “did you hurt yourself?” “oh… You cold?” All I ever want to respond with is (in order): never, of course, and always. But this would never go over very well, so my response is always along the lines of “oh yeah… Just chilly!”.

So, riddle me this: a girl has a sickness that is not seen, heard or contagious… How can she get a sick day? The answer: by sharing all of the most intimate details of  her life in order to explain the unseen, unheard, and non-viral sickness. What does she risk in doing this? Sometimes nothing. Other times, her pride… Always getting too much sympathy; 20 questions… Explaining what, when, why, how, where and who is not just for 3rd graders anymore!

Please understand, I am so happy that I can work, but man… It’s not easy when you are always tired or sick, or in pain. And everyone has advice, but no one understands.

So why not get disability insurance?

I’ll tell you why… Not only is it ridiculous process, to me, it’s not worth risking my integrity or reputation if I CAN continue to work. I have heard horror stories from my friends about being denied several times, fighting judges who don’t understand because of doctors who don’t seem to care, or just aren’t educated enough to offer an opinion on these illnesses. The last thing I need is a doctor announcing to the government that I’m a crazy whiner!

So that’s how it is. And it’s frustrating, and maddening, and irritating and embarrassing and sometimes confusing. But once again, it’s part of my life… It’s my job, and I love it!

Zebra hugs and love to you all!

My Vibrams

What to write about today? Well… I will be honest that I feel like I barely made it through the week. It’s not even that it was a bad week. It was actually a great week! Things are going really well overall! But this week was quite a symptomatic one for me. I have a shoulder that dislocated 2 months ago, and for the most part, I was able to get it to go back in. Unfortunately, it slid back out, but only partially. It has been stuck and popping non-stop since then. It hasn’t really been killing me until this week. And now it’s just throwing everything out of whack. It has my whole arm, my hand, and even my fingers in pain! And then there’s just the normal pain in my right hand, fingers, arm and shoulder. So… With the stuck shoulder, it seems that my neck is also off kilter. Then there’s the intense nausea, stomach pain and exhaustion. But wait! For a limited time only, my body and brain are throwing in palpitations, chest pain, a high heart rate, muscle spasms and dizziness with black out spells…. All a value of an ER visit, absolutely FREE! That’s right… I hold on to my sense of humor, because otherwise it’s just sad and pathetic. But it’s my life and I still love it! 🙂 

Anywho… Man… This arm… It’s gonna be the end of me! 😛 I recently got a new tattoo on my back… Yes I have tattoos, four in fact. Judge me in 3…2…1…

 

Alright, that’s all we have time for. Anyway…I just got the color on it done, and now it’s starting to itch. Now… The problem that is slightly advantageous with joint hypermobility is that it is super easy to put my own lotion on the middle part of my back. I have been a bad zebra this week, because I have been using my left arm, since the shoulder is already partially out of place, allowing me to reach all the way across my back with great ease! Obviously, this has seriously irritated the damaged shoulder. I really must stop! But it’s so easy to reach “that place” when it itches! 

Moving on… Have you ever been kicked in the stomach by a horse? Yes? Well… You might need to consider a new profession. No? Well… That’s how I have been feeling this week. Now, for me, this is typically an indicator of kidney stones. So… I’m crossing my bits on that one! 

Today at work, I tried to help a coworker put up the cover on our children’s climbing wall… Bad idea. I didn’t let her know, but my right hip totally went out of place! That bugger always gives me so much trouble! Of course, now I feel crooked. Haha! 

Apparently I am also dealing with a bit of a brain fog this week as well. I just finished a 30 minute touch-up cycle on the dryer with no clothes in it! I really hope this won’t damage my year-old dryer! 

Anyway… Spring is making its way to my beautiful Valley! And that means WIND!!!! This also means cold wind, since it is stil, in fact, winter. All of this mixes together to mean a Raynaud’s-y day. All day yesterday,  we had severely high and cold winds, so my hands went ice cold, turning a lovely shade of grey, with cute little scaly spots of red and purple! Yay! No really… It hurt. It sort of causes my skin to burn a little bit and tingle a lot. This means that my ears, nose and toes have also been tingling, with feet hurting. Boo… I vote no, thanks! 🙂

Today was met with snow! Snow! Oy… Don’t mind snow at all. In fact, I love it when my whole body is not already in pain and I’m wearing appropriate shoes! Ever heard of Vibram Five Fingers? If not… You should look them up. I wore those today. A coworker who also has them, was asking me how they do in the snow. At the time, I did not know. Now I do. They do not do well. They do not do well at all. My toes are still cold. Lol 

I know that this is a short update and that it is all about me, but I have really enjoyed writing here! I have learned so much! Not just about myself, but about my own disorders as well as so many others! I hope I was able to show you a little bit of of what it’s like in my shoes and that it wasn’t completely boring for you! I promise to have something fun and interesting tomorrow! 😉 

Zebra hugs! 

Rare Disease Awareness Day!

Zealous

Extraordinary

Brave

Rare

Awe-inspiring (I refuse to use awesome”)

These are the words that describe my friends. They are absolutely incredible people! They are fun, loving, loyal, vivacious, hilarious, compassionate, and, well, as I have said before, I could go on forever!

In honor of rare disease awareness day, shall we talk about what is behind those eyes of your sick friend?

I don’t care what ails you, we are bonded. We are bonded, because we know the pain… Both emotional and physical; we know the frustration of dealing with doctor upon doctor. Let us share with the “other side”!

Readers, let me explain to you first of all, what it’s like to be sick, and not know it.

Growing up, I remember always having episodes from day to day. I remember that I would be doing chores, and all of a sudden, as I was walking up the stairs, I would get this burning in my head and I would feel like I coudn’t breathe or see or stand. Suddenly, my whole world would be spinning. My mom, assuming I was being a lazy 11 year old (ever heard of one of those?) would tell me to get a move on. Why should she think anything else? I remember that I would have attacks at night, though, at the time,  I thought that I had woken from a nightmare that I couldn’t remember. I would wake up, sweating, heart racing and feeling absolutely terrified. My head would be spinning and I would be hyper-ventilating; every movement that I would make felt as though it was magnified by ten thousand… A whisper for help sounded like a scream! So, I would lay as still as possible until the worst of it had passed, and then run down the hall to my mom and dad’s room, typcially crying, but always absolutely terrified. Sometimes, this would only happen once a month, sometimes several times a week, but I remember one instance in particular… Because it was on my birthday. I believe it was my 12th birthday and I was having a sleepover. My mom got my friends and me all set up in the first floor living room, before going of to bed. Of course, my friends and I spent hours gabbing away in the dark and listening to books on CD (we were so cool)! As always, I was the last to finally doze off. Then it happened… I jumped awake, and I was sweating, heart racing, terrified… “not on my birthday! What if one of them (my friends) notices!? How embarrassing.” I couldn’t have been more fortunate that my dad had wondered down to the kitchen, so I yelped for him.  “Daddy… Daddy!” “What’s up, baby doll? Why you still up?” “It’s happening again.” “What?” “I think I just had a bad dream.” Even at that age, I knew I probably sounded crazy.

I remember one Saturday morning when I was 12, I left the living room from watching cartoons with my little sister to get myself some cereal. As I stood up, I felt my head start to burn and the blackness to close in around my eyes, as it had so many times before. Next thing I knew, I was waking up, sitting on the floor with my neck and chin throbbing and my little sister standing over me, saying “what happened!? Are you okay!?” As far as I knew, I was just fine, so I continued with my day, though I was exhausted.

I remember  that I was “flexible” and “double- jointed” my whole life. I was always showing my friends new tricks that I had discovered I could do! It was entertaining at least! As a pre-teen, I saw nothing weird about myself and I felt no real pain until high school. After I played basketball as a freshman and suffered aknee injury, I found that my knees had an almost permanent pop to them. My knee hurt long after it should have healed and I found myself extremely frustrated. I hardly played anymore games that season. (Meh… I wasn’t that good anyway.) As I got older, I started to brush off any other symptoms as just normal. I figured that I was just complaining too much and probably weak.

When I started college, I was so excited to be studying music! I even came to school early for a marching band scholarship, even though it was something that I had never done before! Go ahead… Allow the chuckled and giggles because I’m a band geek. 😉 my husband and I even met there, so snicker away! Done? Okay… Let us continue… As marching band season switched from practice and learning to performing, I started to notice the most intense pain in my back and neck and went to the doctor. Upon telling him about my previously diagnosed scoliosis, he perescribed me some pain meds and sent me on my way. Unfortunately, I had an allergic reaction to them and was unable to take them. So I adapted to the pain. As classes went on, I found myself waking up some mornings almost literally unable to get out of bed. If I wasn’t exhausted, I was in pain. People who were supposed to be my friends didn’t believe me and said that I was lazy and a hypochondriac. So I suffered in silence. After my car accident my sophomore year of college, I began to feel more pain than I ever imagined possible. I couldn’t stand for very long and I woke up wanting to scream. Upon telling a friend that I was dealing with some chronic pain, she said “you know it’s all in your head, right?” This cut me deep. In hindsight, I wish that I had punched her in the face, waited for her to say “ow” and then tell her “it’s all in your head, deal with it”! I heard this from doctors even, and that was the MOST infuriating thing of all! All I could think was “I AM NOT CRAZY!!!!”.

Now, readers, allow me to share what it is like for a zebra to see a doctor…

If you asked me, the most terrifying thing that I have probably ever experienced was a moment with a DAD… Dumb @$$ Doctor. No, wait… Two of them who said the same exact thing to me on two separate occasions. When I was first trying to discover what was going on with my heart, and prior to my POTS diagnosis, I went to a doctor who specialized in Internal Medicine and Cardiology… Allegedly. I explained all of my symptoms, and he checked my pulse (which was high) and my blood pressure (which was low). After all of this had transpired,  he turned, looked at me, cocked his head to the side and said, “hmmm…. I don’t know what to do with you.” I also heard this recently from a doctor who knows nothing about EDS before he wrote another doctor about me and said that believes me to have a hypochondriacal neurosis. Lovely, yes? So kind. It fills me so full of hope and confidence. No… It’s scary, disheartening and maddening to deal with these types of situations. It’s something that you simply can not understand until you have faced it on your own.

Today… I have a different view of doctors – unfortunately, but I am determined to make the next one listen to me and HEAR me! Do not pity me, for it will do no good for anyone. Rather, I ask that you help me spread the word! Until doctors understand that these rare diseases are worth really knowing about and teaching about, my same experience will happen to more and more people. I hope I never have to hear another story like mine. Sadly, I know I will. So, we zebras call on you! Yes you! Reading this and scratching your head in astonishment. Share my story, share a friend’s story. If you’re not a talker, share my blog. Anymore, everyone is finding a cause to support. What’s yours?

I apologize for cutting this short, but my fingers hurt! Share some love with someone!

Happy Zebra Day! 🙂

Love, Life, and Chronic Disorders

Life, love, relationships… It’s all difficult enough without adding stress. That stress can come in any form: job loss, money trouble, stress at school, stress at work, kids… These are all stresses that people face regularly. Toss in a flu here, strep there, and you have life! My guy and I were fully prepared to face these types of stresses together! No problem… Easy peasy.

For M and I, life has been a little bit different… From car accidents, to sickness; from root canals to surgery, we have packed in plenty of stress in our almost 6 years together! We have seriously “done the time”. Yet, we know that there is more to come. We have hurt, we have yelled, and we have laughed. Most importantly, we have loved. We have learned. And we are ready for just about anything!

When someone has a chronic illness, or illness of any kind, really, sometimes the face of the sick is the only thing we see. But it is so important not to forget about those ever so important and supporting partners on the other side of illness. Often times, these partners are the bread winners, sometimes they are equal partners, and in some instances, they are equal sufferers. No matter the case, dealing with a chronic illness takes a serious toll on a relationship.

Although M and I are learning to cope and deal with each situation one day at a time, it wasn’t always this way. For a long time, it was tense. Neither of us understood what was wrong with me. I thought I was crazy; he thought I was crazy. I ended up paranoid that everyone could see the “crazy” written on my face! I was constantly tired or nauseous, and although this was tough for me, M started to become frustrated that I was no longer the active Cheerleader and fun-loving girl that he met. I’m sure he was convinced that I was depressed or just anxious… I know it crossed MY mind more than once. All I wanted M to do was understand! If he would just understand how poorly I was truly feeling!

He not only knew how I was feeling, he was freaked out because he knew I wasn’t okay. No… He didn’t know if I was really sick or really crazy, but he knew I wasn’t okay. And being the “fixer” that my husband is, he was angry that he couldn’t just make it better for me. Being selfish and completely focused on myself, I never even considered that M might be worried or frustrated or scared. I thought he was being a jerk. After one fateful appointment, during which Brandi (mentioned previously as my godsend) mentioned that there could be something going on with my heart, I delivered the news and my frustration to M and that was when I saw it for the first time: He was so not okay with what was going on. Things were stressful and tense while we waited through this test and that test to finally receive a diagnosis, and our relationship was changing. Being just engaged, I knew that if he could stick by me through all of this now, we could make it through just about anything! Finally, after I received my POTS diagnosis, we were married and ready to take on the world. Through our first year of marriage, we faced enough of a challenge in adjusting to just being married! After struggling and all the tension, my POTS seemed to finally be under control.

Then… It started…

The twitches, the spasms, the pain…

It didn’t all start suddenly, or out of nowhere. It was all very gradual. Some days, I would have a spasm in my arm that would last a while, but didn’t seem to be bothering anything. I figured… People spasm sometimes. Muscles work hard all day long. Sometimes my eye would twitch, but I figured my eyes were tired; after all, I never wear my glasses like I’m supposed to and I’m on the computer a lot. As the days and weeks went by, the twitches and spasms would last longer and longer and I would feel what I can only best describe as “bone pain”. I’ll admit that I’m not the best communicator, especially when it might lead to my vulnerability or show my weakness. So, when I decided to alert M of my new symptoms, I waited until my arm was in the middle of a pretty intense spasm and tried to make light if it, even though it had been going on all day and I was seriously freaked out. I simply said, “haha… Check that out! Been doing it all day. THAT can’t be good! Haha!” So, I don’t know why I was so surprised when M replied with, “huh… Weird” and then turned back to his T.V. show. And with the pain, I wasn’t much better in my communication. So, I don’t know why I was so surprised when M looked at me and said, “it can’t be that bad”. I had dug my grave. If I told him the harrowing truth now… That I wanted to scream with pain when I woke up every morning, and that my twitches were intense and making it difficult for me to do certain things, of course he was going to think I was crazy! Finally, I told him I was going to the doctor. It should be of no shock that he responded out of anger. “Why didn’t you tell me it was that bad!?” I was preparing to go on a trip to visit a friend… “If it’s really that bad, maybe you shouldn’t go tomorrow.” I responded with anger right back. I saw this as a challenge. I went anyway. Even though it was a wonderful trip, in hindsight, maybe I shouldn’t have gone. I’ll never know. All I know is that I wasn’t fair to M.

I think that, a lot of the time, when a person is sick, that person expects his or her partner to just deal with it quietly, while sitting on the sidelines. I think we tend to push our partners away, by trying to make light of the situation instead of just being real about it all; being vulnerable and honest that we really are kind of terrified. For those of us who are incredibly lucky, our partners stick around anyway and MAKE us communicate. As a lucky one, my M has not only done this, but he has found a way to incorporate this part of my life into his; he has learned new ways of reading me. Now, he can tell just by looking at me if I’m having what we zebras call a “painy” day or a “POTSy” day. Even still, it’s not always easy. Even still, I live in the land of denial and swear that there is a lighted, flashing, glittery sign on my head reading “crazy” and show girls in straight jackets doing the can-can next to it. The simple fact that I have thought this image up might be disturbing in itself, but I hope you enjoyed it!

Well… This brings me to the end of our 6th encounter. I hope I have enlightened you all a little bit, but I will admit that I have a limited perspective, for I can only report what I have experienced from my perspective. If you want to know everything… You will have to talk to M.

Zebra love and hugs to all!

Types and My Zebra Friends!

As I sat here today, pondering exactly what I would write about, I realized the importance of communicating with all of you who are reading my posts, exactly what goes in to the typing of EDS once a diagnosis is received. However, I feel that it is also important (as an advocate of my fellow zebras) to inform you of all of the possible co-morbidities that these friends of mine are afflicted with daily. At the very beginning of our correspondence, I wrote of POTS and my struggles with it. But I want it to be clear, that although it is difficult, my “suffering” pales in comparison with so many! 

But first, let us discuss the types of EDS. Bear with me, as I am going to be throwing a lot of information your way. Also keep in mind that it is more than possible for an EDS patient to be “typed” with more than one form of EDS. 

*For anyone who might be curious, I am getting all of this information from the Ehlers-Danlos Syndrome Network: ehlersdanlosnetwork.org

Classical Type (Previously I and II): “The Classical Type of EDS  is characterized by highly elastic, soft, and doughy skin; unusual scarring; and loose joints.  This type of Ehlers-Danlos Syndrome combines the types formerly called I and II.  Ehlers-Danlos Syndrome, Classical Type is a subtype of Ehlers-Danlos Syndrome.”

– “People with the Classical Type have smooth, velvety skin that is stretchy, fragile, and easily bruised. Wounds often split open with little bleeding, heal slowly, and leave characteristic thin, wide scars (“cigarette paper” scars). People with this condition also have loose joints with an unusually large range of movement (hypermobility). As a result, joints are prone to dislocation, sprains, and the early-onset arthritis. Non-cancerous fibrous growths on pressure points (such as elbows) and fatty growths on the forearms and shins are also common.  Other manifestations include weak muscle tone in infants due to hypermobility, which can make them seem “floppy” and delay the development of motor skills such as sitting, standing, and walking. As many as half of the people with Classical Type Ehlers-Danlos Syndrome have a condition called mitral valve prolapse, which affects blood flow between the chambers of the heart.” 

– This is the most common form of EDS and is typically inherited. 

Hypermobility Type (Previously Type III): I don’t feel as though I need to expand on this type too much, as I have provided the most information on this, using my own story, but I will give you the explanation as described by the Ehlers-Danlos Syndrome Network: “The Hypermobility Type of EDS is characterized by loose joints and chronic joint pain. This form of Ehlers-Danlos Syndrome was formerly called type III.  Ehlers-Danlos Syndrome, Hypermobility Type is a subtype of Ehlers-Danlos Syndrome.”

– You will remember that one of the key indicators of this type, is hyper mobile joints, but it is not necessarily the first symptom to rear its ugly head. 

Vascular Type (Previously Type IV): “The Vascular Type of EDS is characterized by possible arterial or organ rupture as a result of spontaneous rupture of vessels or organs due to the result of even minor trauma.  The Vascular Type of EDS is the most serious form of Ehlers-Danlos Syndrome.”

– “People with the disorder have thin, fragile skin that bruises easily. Veins are visible beneath the skin, particularly on the chest and abdomen, and hands and feet may have an aged appearance. Unlike people with other forms of Ehlers-Danlos Syndrome, people with the Vascular Type have skin that is soft but not overly stretchy. Facial features are often distinctive, including protruding eyes, a thin nose and lips, sunken cheeks, and a small chin.”

– …”tearing of tendons and muscles, painfully swollen veins in the legs, lung collapse, and slow wound healing following injury or surgery. Infants with the condition may be born with hip dislocations and a foot disorder called clubfoot, which causes the foot to turn inward and downward.” 

– Spontaneous rupture of internal organs is a very real possibility for people with Vascular type Ehlers-Danlos Syndrome.

– This is a very tough form to diagnose, but is the most dangerous of all of the types of EDS.

– As you read, you may notice that there are symptoms and criteria that span over several types of EDS. 

– Hypermobility of joints IS a symptom that coincides with the Vascular type of EDS. 

Okay… are you getting bored yet? Stick with me. There are a few more types to go through. I understand that it is a lot of information to take in all at once, but it is very important to me to share the plight of my friends! 


Kyphoscoliosis Type: “The Kyphoscoliosis Type of EDS is characterized by generalized joint laxity and severe muscle hypotonia (weak muscle tone) at birth.  The muscular hypotonia can be very pronounced and leads to delayed gross motor development.  Individuals with the Kyphoscoliosis Type of EDS present with a progressive form of scoliosis at birth. The phenotype is most often severe, frequently resulting in the loss of ambulation in the second or third decade. Scleral fragility may lead to rupture of the ocular globe after minor trauma.”

– “Tissue fragility including atrophic scars and easy bruising. Spontaneous arterial rupture can occur. 


Other Findings May Include
  • Marfanoid Habitus (Marfan like features)
  • Micro Cornea (abnormally small cornea)
  • Radiologically Considerable Osteopenia (diminished amount of bone tissue)

The Kyphoscoliosis Type of EDS is the result of a deficiency of lysylhydroxylase (PLOD), which is a collagen-modifying enzyme. This type of EDS is inherited in an autosomal recessive manner. The Kyphoscoliosis Type of EDS can be diagnosed through a urine test.”
 
I confess that I have much less knowledge, myself, about these last few types of EDS, so I have no personal input in regards to each one, but it makes them NO less important than any of the others! 
 

Arthrochalasia Type:  “The Arthrochalasia Type of EDS is characterized by congenital hip dislocation which is present in all biochemically proven individuals with this type of EDS. 


Severe generalized joint hypermobility with recurrent subluxations are seen in individuals with this type of EDS. 

Other manifestations of this type may include
  • Skin hyperextensibility with easy bruising
  • Tissue fragility including atrophic scars
  • Muscle Hypotonia
  • Kyphoscoliosis
  • Radiologically Mild Osteopenia. 

The Arthrochalasia Type od EDS is caused by mutations leading to deficient processing of the amino-terminal end of proa1(I) [type A] or proa2(I)[type B] chains of collagen type I. It is inherited in an autosomal dominant manner. A skin biopsy can also diagnose this type of EDS.” 
 
Dermatosparaxis Type: The Dermatosparaxis Type of EDS is characterized by severe skin fragility and substantial bruising. Wound healing is not impaired and the scars are not atrophic. The skin texture is soft and doughy. Sagging, redundant skin is evident. The redundancy of facial skin results in an appearance resembling cutis laxa. Large hernias(umbilical, inguinal) may also be seen. The number of patients reported with this type of EDS is small.


The Dermatosparaxis Type of EDS is caused by a deficiency of procollagenI N-terminal peptidase. It is inherited in a autosomal recessive manner. A skin biopsy can diagnose this type of EDS. “
 
One more, folks… stick with me! 
 

Tenascin-X Deficient Type: The Tenascin-X Deficient Type of EDS is characterized by

joint hypermobility, hyperelastic skin, and fragile tissue. Lacking multiple shrinking (atrophied) scars in the skin that is often seen in the Classic Type of Ehlers-Danlos Syndrome. Inherited as an autosomal recessive genetic trait (not seen in family members or only in one generation of members of the same family).”
 
Okay… we have covered them all! Unfortunately, I must admit that a simple definition and diagnosis criteria goes nowhere near really explaining each type of EDS. To really understand the gravity of each situation, one would have to speak with a sufferer. 
 
Moving on… 😉 
 
 
In the past few months, I have been so lucky to make some new friends! These are friends who I can really open up to about my troubles with my EDS, POTS, pain, just about anything really! Of course I do still talk to my husband about it, and he is ever so aware of the realities of what I (really, we) deal with. However, there comes a point of frustration (on both our parts) when he can’t REALLY understand me. This is also a reality. He can sympathize… sure! But what really counts, is that he doesn’t really know how I feel. So I have turned to my support group of wonderful friends and fellow zebras. These ladies (and a few gentlemen) are wonderful, caring, compassionate, smart, and frustrated people! Collectively, we can joke about our illnesses and talk about just about anything in life, but at the end of the day, we are still sick; at the end of the day, someone needs surgery; at the end of the day, someone is having seizures, or starting another round of chemo or radiation, or physical therapy. What’s really sobering at the end of the day, is that there are so many mothers and fathers who share this with their children. I can’t imagine. To have an entire family in pain… I’m sure that they share special bonds, but I can’t imagine how I would feel if I had to watch my husband suffer like I do. 
 
Personally, my additional health issues include: POTS, Raynaud’s, IBS, GERD, Reflux, Dysfunctional (or Dry)  Vocal Chords (though I still try to sing), asthma, and non-celiac gluten sensitivity (I am gluten free). 
 
This may seem like a lot, but the fact that I have learned to just live with it aside, what I struggle with is light compared to some of my friends. 
 
Here is a list of just a few of the illnesses that they suffer from in addition to EDS:
 
-**Chiari Malformation: (from the Mayo Clinic) “Chiari malformation (kee-AHR-ee mal-for-MAY-shun) is a condition in which brain tissue protrudes into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward. Chiari malformation is uncommon, but improved imaging tests have led to more frequent diagnoses.” 
 
**there are subtypes of Chiari Malformation not listed in this post
 
– Multiple Sclerosis (MS): (from PubMed Health) “Multiple sclerosis is an autoimmune disease that affects the brain and spinal cord (central nervous system).” >>> This is a VERY basic definition of a very debilitating disease. 
 
– Marfan’s Syndrome:(from the National Marfan Foundation) “Marfan syndrome is a disorder of the connective tissue.  Connective tissue holds all parts of the body together and helps control how the body grows.  Because connective tissue is found throughout the body, Marfan syndrome features can occur in many different parts of the body. 

Marfan syndrome features are most often found in the heart, blood vessels, bones, joints, and eyes. Sometimes the lungs and skin are also affected.  Marfan syndrome does not affect intelligence.” >>>Olympic Gold Medalist Michael Phelps suffers from Marfan’s. 

– Fibromyalgia: (from the Mayo Clinic) “Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.” 

These are just a few of the additional disorders and diseases that my friends suffer from. One of my friends has had to have surgery on her abdomen and GI tract, because of extreme malfunction; another friend has a tumor that is slowly (or perhaps not so slowly) killing her…

This disorder may be tougher to deal with some days more than others, but I still have to count myself blessed when I get to be at home in my own bed at the end of every night. My friends are brave, strong, tenacious, incredible… I could go on. Mostly… they are MY heroes! 

I love my Zebras… 🙂 

 

 

A Day in the Striped life of a Zebra

As you read my title for this post, I’m sure you thought, “what in the world!?” well… Allow me to explain. 

Have you ever heard of Occam’s Razor? This is a principal in the medical field, which states that the simplest or most obvious explanation is almost always the correct one. Another way “they” put it is: just because you hear hoof beats, it doesn’t mean “zebra”… Most likely it’s going to be a horse. Makes sense, right? Wrong.

For a person with EDS, it is assumptions like these that can be dangerous. We ARE the zebras. We live our lives in the realm of “that can’t be true.” A few days ago, I posted about the details of POTS and EDS, and I included a slideshow of me doing what we call “bendy tricks”. 

Sure… Some of that was pretty interesting to look at, but in all reality, it was painful. I finished my personal little photo shoot, posted my blog and then found myself completely spent the rest of the day. Thanks to my provocation, I found myself unable to perform even the simplest of tasks without the interruption of arthrytic like pain. Even typing or lifting a glass to take a drink was met with great struggle. Although this instance of pain can be blamed on me completely, there are more days out of the week that I wake up to this kind of pain than not. 

Here’s an example for you… 

Yesterday, I was going to post about EDS. Unfortunately, I woke up with some pain, but then, as I was putting some lotion on my hands, I dislocated a pinky. Don’t worry! I was eventually able to remedy the situation, and honestly… It was such a tiny pain. It was just so out of nowhere! 

Now, let me explain to you how my journey has lead me to a place of waiting for an official EDS diagnosis… 

 As long as I can remember, I have been both “flexible” and “double-jointed”. Why the “”? Well… There wasn’t a very large part of my life during which my actual muscles were flexible, and I know this now. Also… Apparently there is really no such thing as being “double jointed”. I have come to learn that this is something that doctors will tell patients when they just aren’t sure what to tell the patient or how to explain the phenomenon. However, when your bones, both voluntarily and involuntarily, are going in and out of “place”, there is a problem. A real one. 

When I was (I think) a junior in High School, I suddenly started having a pain in my ribs that was extreme and, at times, unbearable. Sometimes, it just felt like my ribs were getting “stuck” on something. Other times, it felt as though a metal rod had been shoved into the middle of my abdomen from the side and it was not separating my upper body from my lower body, as that rod was twisted. It would absolutely take my breath away. It was horrendous! I finally saw our doctor who told me that I have mild scoliosis. Great, doc, but how does that cause pain in my lungs and ribs? His explanation was pleuracy – a phenomenon, during which a rib will “catch” on the lining of the lung and tug when there is movement. Fun, huh? He told me that the residual pain shouldn’t last long and that I would be fine. Fantastic! I was cheering and really didn’t want to miss out! Two years went by and sometimes I would still feel that odd pain, but it wasn’t something that I couldn’t handle. 

Soon, I was a freshman in college. Yay! Freedom! I came to school on a vocal scholarship, as a performance major and I could not wait to perform at the collegiate level! Things were going really well and I was enjoying learning all the “ins and outs” of the music I loved so much! Then Icame down with bronchitis right before our big holiday choral performance. I pushed through and I made it, but the pain was back. From what I had heard from other doctors as well as my own research, pleuracy was not something that should be persistent OR recurring. I knew something wasn’t quite right, but I had no idea what to do about it at 18 years old and out on my own for the first time. So… I drank extra tea and used a heating pad, which got me through, but the pain was almost permanent at that point and, unfortunately, I started to become completely accustomed to the pain. Soon, I started to cheer again. It was okay, but not like High School. I always loved running, but I found that any time I ran, I would eventually be overcome with coughing fits, which I recently learned are actually bronchial spasms. (my bronchial tubes literally spasm) The pain I was in after each practice, required significant recovery. I simply thought I was weak. One day, during practice, a girl fell right on my head and Ia sprained my neck. 100 pounds of falling cheerleader will do that to you, I suppose. I just always hoped my head didn’t hurt her back too much! :/ Anyway… Soon after this incident, with a neck brace… I decided it was probably best for me to step down from the squad. It was upsetting, but I could tell that my body was getting tired and I just couldn’t do it anymore. I didn’t want to hurt anyone else or hurt myself worse. 

My Sophomore year of college, things were good. I was living off campus with a friend and we were having fun, but financially, things weren tough on me. By the end of the semester, I had decided to move back home for a semester and “figure things out”. However, I wanted to finish tha semester with a bang first! The end of November rolled around and then it was the first of December, 2007. My best friend and I decided to go up to Colorado Sprints to do some Christmas shopping and I was going to take some boxes to my parents’ house so that I would be ready to leave after finals. Instead, early that morning, on the first day of December… A friend’s birthday… My best friend and I found ourselves rolling in her husband’s truck down La Veta pass. As the driver, she sustained the most visible injuries. Me… My spine was compressed and I had shrunk (shrank? I never know) almost 3 inches total. Basically, we got lucky. But for me, this was the beginning to a pain I had never known before. 

After the accident, my back was obviously damages and I vaguely remember trying to walk around the house, but it just always hurt so much! I don’t remember much more about my recovery, since my memory was severely affected. 

Now… Let’s fast forward to the winter of 2008. That summer, I had suffered from my first rounds of kidney stones. Now, with the weather cooling down again and back in the beautiful Valley that I live in, I started to notice some serious pain. I was told that after my accident I had sufferedserve damage  to the right side of my body. This made the pain even worse, limiting muscle movement in my right hand, as it does now. As it got colder and colder in our dessert, frozen tundra, I soon found myself unable to even function unless I took at least 5 tylenol pm every night! Obviously, this was not good for me… Especially my stomach!  I tried taking warm baths before bed and I even bought myself a heated mattress pad… Which is still amazing, but just not enough; neither then, nor now. (Of course, now I’m more used to it.) 

I went to a doctor, because I didn’t know what to do and said, “I think I must have chronic pain or something.” To which he was the first of many to reply, “chronic pain isn’t real. It’s all in your head and I would just give you placebos.” Okay, jerk. Well… Your fake meds aren’t going to help my REAL pain! I didn’t see a doctor again until the wonderful Brandi, who I mentioned in my last post! 

She was the first doctor to really pay me any sincere attention. Not once did I ever have her walk into the room and look at me as she wracked her brain to remember who I was. Not once did she have to look at my chart so she could remember my name. She always knew who I was and what kind of care I needed! (she recently moved out of the state, and yes, I cried) 

Let us fast forward a few more years to AFTER I received my POTS diagnosis…

2011…

My POTS was finally getting under control, and I was ecstatic! I was finally able to be active without feeling like my heart was going to beat right out of chest. However, my pain was starting in again, and it was getting worse. I wouldn’t have thought much of it, but it was Summer time! I just didn’t get it! Fall time rolled around and it was the week before I was supposed to be taking a bus across several states to Louisiana to visit my best friend and my godsons. I woke up one morning to the left side of my face twitching. It wasn’t a slight twitch like one might experience in the eye when tired… It was intense. It started in my lip and eventually moved up my cheek and into my eye. Now… It wasn’t painful, but it was disconcerting, to say the least. Soon… I started to notice a tingling sensation that I would get up my face to my head and down my neck into my back. Again… Painless, but irritating. The day before I was to leave for Louisiana, a spasm in my arm started that lasted all day long. This spasm was painful, and overwhelmed my entire arm, so that I could hardly us it all. I decided to mention this to Brandi. She immediately decided to look at MS, given some of my other symptoms. She had blood drawn for everything imaginable; something I had grown accustomed to, yet I still asked the sweet lab tech girl to leave some for me to take home with me! (she obliged) Out of twelve vials of blood, the only significant result was my vitamin D level, which was low.  Brandi immediately started me on prescription supplements, which admittedly helped for a while. However, this “while” didn’t last nearly long enough. After about a month, the spasms were back with a vengeance and a new symptom had started to take form; from time to time, at completely random moments, I started to feel an intense burning sensation on my skin, as though someone was holding a hot curling iron to my skin. It is still something that occursr regularly. 

Back in late October, early November, I was introduced to a group of folks who suffer like I do. I can’t tell you how amazing it felt to hear people tell me I’m not crazy! They went on and on about something called EDS. After receiving more information and doing my own research, I started to realize that this was exactly what I had been dealing with! However, I was still hesitant to say that this was probably what I have. In these last few months, my pain has most certainly gotten worse. Bones slip out of place regularly, but mostly I can just phenagle them back into place with no trouble. Every once in a while, I will have trouble with a hip and hobble around for a few days, but I am learning how to cope. Sometimes I’m scared. A lot of the time, I’m okay with things and am just determined not to let it ruin my life. I just wish my doctors felt the same way. The first time I mentioned this to a doctor, he told me I was probably just depressed and that he didn’t really know anything about EDS, so he didn’t think I could possibly have it. He left me with a referral to a neurologist (whom I have yet to see)  and a complex that I am crazy. He never even checked the mobility of my joints. Ignorant…

The second time I mentioned this to a doctor, it was well received, with the admission that he didn’t know ENOUGH about EDS, but that he would like me to see a geneticist. After making it through a job change with my husband, we are just waiting on the health benefits to kickon and it’s off I go! Hopefully, one day soon, I will wake up without pain. Still… There is no cure. 

So this is my journey.

My journey began…

Blog number 3… here we are.

I hope you are all finding this easy to read, access, and understand. That is my goal through all of this. These rare conditions are difficult enough to understand that even doctors don’t know what they are all about, so I hope that I am being clear and concise. It is my hope that if any of you have any questions at any time, you will let me know and not be afraid to ask! I wish people had asked so many more questions these last few years of my life! 🙂

Now I would like to begin to share some of my story with you all… This will be a story full of frustration, doctors I dislike, doctors I like and, in the end, hope. Here we go…

My first truly frustrating, negative situation with a doctor happened roughly a year after I was in a terrible car accident with one of my very best friends. This accident may have been the beginning of everything for me, but there is no real way of knowing. (At least, that’s what I’ve been told.) This car accident left both the driver and me with a lot more emotional scarring than anything else, but the nerve pain was intense! The bone pain… felt like bone pain, but the nerve pain… it was unlike anything I had ever felt before! I even found a few weeks after the accident, that my intestines were bleeding. It was terrible pain and I could hardly eat. Our accident was December 1, 2007.

Fast forward to Summer of 2008…

After spending a few months in Colorado Springs with my family to recover from my accident, I finally came back to the San Luis Valley at the end of February. Unfortunately, I was not well enough that I could go back to school, and I knew I would also be needing to re-do that fall semester, since I had missed all of my finals. It was difficult getting back into a version of life where I was independent. After my accident, I became severely dependent on my parents… physically, emotionally, mentally… you name it. I needed them. Now, I was expected to go back to adulthood and learn how to be an adult again! I was nervous beyond belief, but my husband (then boyfriend) was my rock. By mid-May, I had found a new job, we had found an apartment in town with a friend, and I was preparing for Summer classes. Life was good! I was a busy girl that Summer and well into that Fall semester. I was working 40 hours a week and going back to school full time. Suddenly, out of no where, I started feeling nauseous. Every day, I would wake up and feel like I had been punched in the stomach, I was in pain and I was beginning to vomit regularly every time I ate. Soon my back started hurting. Finally, it was as though I couldn’t breathe without feeling pain, let alone walk! I saw a few doctors… one said I had a UTI and just needed some antibiotics, but after I finished my treatment, I was still in pain. She suggested I see someone else. I went to another doctor, who so obviously did not believe me. He looked at me as though I was crazy… I had lost roughly 15 pounds by this point (3 weeks since the start of my symptoms), but still he looked at me like I was crazy. He kept asking me questions which indicated his assumption that I was causing myself to lose weight but just wanted to “score” some pain pills. In a move that I can only imagine this doctor hoped would scare me away, I accepted a shot of nausea medication with a HUGE needle going right into my hip. The pain was excruciating but I was totally fine with it! Anything to make it stop! He decided (reluctantly) to order a CT scan of my abdomen at that point. It was scheduled 4 weeks out. This was absolutely not going to be soon enough. I left that office with a bruise on my hip, limping from the pain, 15 pounds lighter and feeling like I was crazy. The pain got worse with each day, until finally I decided to walk myself down to the ER (I was working in the hospital) after I got off of work one evening. The ER doctor was kind enough and said that he thought I had gall stones and that I should avoid fatty foods, red meat, and dairy. This blessed man sent me home with pain meds. Finally, I had my CT scan! Upon my follow-up, I fully expected to hear that I was just crazy! Instead, this is what he told me (I will NEVER forget): “Well… it looks like you have a few kidney stones there… 4 in total, and it looks like you’ve passed one before these. Still… you shouldn’t be in this much pain or discomfort.” Seriously!? You have got to be kidding me! He was so smug… I simply chose to blow off the rest of what he said. I got my pain meds and nausea meds, and I left… hoping to never see this man again. And I didn’t. He never bothered to schedule a follow-up. He did, however, send me to Colorado Springs to see a surgeon, who was expecting to take out my gall bladder… I had been told I was going for an endoscopy! What a mess this doctor was! (His office too, obviously!) Still… this was only the beginning.

A few months later, I passed yet another stone.

A year later, I had SEVEN more! For those of you who have lost count, I had kidney stones 4 times in two years! No one ever bothered to figure out why or how. But this time… I met Brandi. She was PERFECT! I know… it sounds like I fell in love! She was a Nurse Practitioner, and she was what I had been searching for my whole life! Upon learning that I had SEVEN gigantic kidney stones, she decided to stay in touch, and made several personal calls to me, after hours just to make sure I was doing okay until I could see a urologist. That woman did everything for me! Let me take a quick rabbit trail…

For those who may be wondering “what constitutes a HUGE kidney stone?”… I have the answer. Typically they average 1-2mm in diameter. With these seven stones sitting in my kidneys, etc., my SMALLEST one measured roughly 3mm in diameter. This guy was lonely… the rest of my stones measured anywhere between 5mm and 7mm in diameter! Because of this, my doctor set me up with a urologist who saw me and instantly decided I needed to have a lithotripsy as soon as possible. Basically… He wanted to put me on a table, knock me out, shove a tube down my throat, and beat the CRAP out of my kidneys with a huge, and very loud machine, in order to break the stones up so that I could pass them more easily. I could go into much more detail here, but the recovery was a b!*$H!

I sincerely thought things could not get worse than this!

I was so wrong…

I had gotten engaged in 2009, so 2010 started with excitement and a Wedding on the horizon! We scheduled the big day for later that year and started the planning! Suddenly, I woke up on Easter Sunday with the BIGGEST big toe on my right foot that you could imagine! It looked like it was broken! I had no idea how I could have broken my toe in my sleep, but I limped my way through brunch with the in-laws and headed for an orthopedist later on that week. Long story short… I wore a gigantic boot on my foot for nearly 2 months! Why? I had an extra bone in my foot of course! Apparently this uninvited stranger was attempting to make a break for it through my toe! Shots of some kind of incredibly painful steroid or something helped to remedy the situation, so I could avoid surgery. Then… it happened…

That pain in the abdomen… the nausea… the weight loss… the vomiting… the pain in the back. They had returned, right? The kidney stones??? Wrong… I had gall stones. In the middle of all of this, I had started having these attacks at night. I used to have them when I was younger. I would wake up in the middle of the night, heart pounding, sweating, absolutely terrified. It felt like every movement that I made was magnified by 100! I was never sure if I was still breathing or not, all I knew was that I was going to die, and I wished and prayed that it would finally just happen. These attacks were MISERABLE. Then, it started to happen during the day… I would get ridiculously dizzy, my heart would start racing, and all of a sudden I would black out. Then the chest pains started and out of no where, I was exhausted. No amount of sleep was enough. Summer of 2010, I had my gall bladder removed. As much as my doctor wanted to address the other problems I was facing, I really needed to get that thing out of me! The surgery was a breeze… in and out in about 45 minutes. Recovery was a little difficult. I didn’t seem to be healing very quickly, but my surgical compression stockings always made me feel about 10 times better! I would soon learn that this was indicative of my POTS.

After two weeks, I had recovered from my gall bladder surgery and I was back in the office with the INCREDIBLE Brandi… she was amazing through everything! She kept in touch with me, and if I ever needed to see her suddenly, I was told to come it “right now”. Brandi wanted me to see a cardiologist who came to town every once in a while from Denver. “Not much of a bed side manner, but a very smart man”, she said. I saw cardio number one and he immediately dismissed all of my symptoms as anxiety. After telling him that I had been on anti-anxiety medication, he agreed to run a few tests on me. First he did an echo (ultra-sound of the heart), and then he wanted me to go to Denver for a Tilt table test, which would (unfortunately) have to wait a few weeks. The weekend of my Bridal shower, I went to Colorado Springs, saw family, had a blast, and then on Monday, my little sister drove me to Denver t0 have my tilt table test done. The doctor was specifically testing me for NCS or neurocardiogenic syncope. My test was negative for NCS, but I did have significant response to postural change (change in position from laying down to standing up). The PA (Physician’s Assistant) that the cardiologist had left me with completely dismissed everything else that had happened during the test. Thankfully, a concerned nurse wanted me to know about something that she called POT Syndrome. That day, I went home and looked it up right away! It fit! When I got back home, I took this to Brandi and she wholeheartedly agreed with my suspicions. She agreed to do some research and asked me to come back in a few days to follow up again. When I did, she decided I should see a new cardiologist soon, but wanted me to see one of the other Internal Medicine doctors who specialized in cardiology. He started me on beta blockers. (meant to decrease blood pressure, heart rate and decrease overall symptoms of POTS) The adjustment to these meds was difficult, but after a while, they really did help. Unfortunately, they didn’t help for a very long time on their own, because, unfortunately, my blood pressure was already low, so these meds absolutely exhausted me by dropping it even further. For the time being, there was nothing much to be done. My sleeping problems had started again. It’s possible that I had become so afraid of having an attack at night that I couldn’t fall asleep. In any case, Brandi decided I needed something to knock me out, as we had tried more regular sleeping pill prescriptions to no avail. Soon… it was time to get married! 🙂

My beautiful Winter Wedding went off without a hitch, and M and I started the beginning of our Happily Ever After!

I only wish I didn’t plague him with all of these ins and outs, ups and downs of my poor health. How much happier everything could be! But we cope, and we get through.

2011…

I finally saw my new cardiologist. He is AWESOME! Immediately seeing that my symptoms were not being managed properly, he started me on a low-dose steroid. This was intended to keep my heart rate down, but bring my blood pressure up. It also addressed the issue of severe chest pains that were almost to the point of angina (pain like that of a heart attack, that might lead one to believe that a heart attack is occurring… typically a symptom of underlying coronary heart disease). The steroids were a bit rough to get used to, as they caused intense swelling everywhere as well as weight gain. In the Summer of 2011, I found that wearing compression stockings was very helpful in keeping the swelling down in my hands, arms, feet and legs. I should mention that because my body temperature is poorly regulated, heat in the Summer and cold in the Winter, affects me differently than most people. In the Winter, my “bones hurt”, but in the Summer, my hands and feet swell more than any other time of the year, as blood pools and my heart rate spikes. Compression stockings help to reverse this; they encourage the blood to flow back UP my legs into the rest of my body, cooling me down, and bring my blood pressure up and my heart rate down, although hydration is KEY.

Fast forward to 2012… This year has been a good POTS year so far. I have been able to keep my symptoms under control for the most part, with a few issues here and there, but mostly all good stuff! 🙂

I know I packed a LOT into this post and that I haven’t even addressed the issues I face as far as EDS goes, but I think we all have more than enough to process for the time being! I apologize for the length, but I do thank you for taking the time to read through this!

Zebra love to you all!