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 🙂

To be or not to be… Crunchy?

Becoming a mommy has changed my life. I’m sure any parent would attest to the fact that babies change absolutely everything. But we begin preparation as soon as that test shows positive. There are so many decisions to make; so many choices. What will we name him? How will we raise him? Will I get an epidural? Should I breast feed? These are only a few of the questions that arise. But there was one question that I was completely unprepared for going into pregnancy. This question fell to me on another blog site where I chat with mommies, wives, and wonderful women. That question was: Will I cloth diaper?

Cloth diaper!? Ewww… of course not!

That was my automatic response. When thinking of cloth diapers, all I could imagine was the white cloth and safety pins, poop everywhere and dirty toilet water all over me! How wrong I was!

These days, we are seeing a trend. I guess you could call it a “hippie mom” trend. But it’s more commonly known as being a “Crunchy mom”. Along with this trend, comes new ways of doing things that our mothers and grandmothers probably never had the opportunity to enjoy. Cloth diapers are just one example. Compared to the white cloth and safety pin standard, there are several choices for the cloth diapering family: Pocket diapers, all-in-ones, all-in-twos, liners, inserts, bamboo, cotton, fleece, microfiber, velcro, snaps… the list goes on. Never in a million years did I imagine that I would even consider being a cloth diaper mom! And even bringing the idea to my husband made me feel like a huge “hippie”! But then I looked at the price comparison. After a larger initial investment, I realized that we would never have to buy diapers again and would see a return on our investment in a very short amount of time! Now, don’t get me wrong, there are some lines of cloth diapers that are a pretty penny. (We were lucky to be gifted one of those lines in entirety.) However, there are several much more affordable options! you could probably spend an average of $250 for a good stash of cloth diapers including liners/inserts, where you might spend $250 or more on disposable diapers in roughly two months! Before our generous in-laws purchased our awesome custom made diapers for us, we had decided to purchase a sort of “sampler” package of diapers, since we had no hope of finding cloth diapers in our small community. From there, we had planned to sort of just build on our stash as my pregnancy progressed. So… we made the decision to cloth diaper from a financial standpoint. (Sure, there is more laundry to do in our house, but there would be anyway, right? I mean… baby boys – and babies in general – pee A LOT, and our baby boy is a champ! Not to mention spit ups… All of this combined, we go through more than one outfit a day for sure. So, the laundry aspect was not intimidating to me.) But then we learned about the environmental standpoint.

Did you know that even when using disposable diapers, all feces should first be disposed of in the toilet before tossing the diaper in the trash? Neither did I! But it makes sense. Because no one knows about, and therefore does not follow this policy, there are landfills containing (literally) tons of human feces. This isn’t right. Human feces belongs in sewage. It’s supposed to go through a septic tank and the water will then be purified and sent back down the pipes. I mean… you wouldn’t catch a grown man taking a poo in a trash can, right? So, why should we toss our baby’s poo in the trash?

This article will explain the environmental need for cloth diapering in more detail:

http://www.smallfootprintfamily.com/dangers-of-disposable-diapers

Now, lately I have begun to ask myself this question: is this trend in cloth diapering a fad, or is it out of necessity? We all know that the economy is not fantastic. And global warming is an ever-present threat. So… is this a fad that will die out again like bell-bottomed jeans or will it stick around? I have myself wondering if people are choosing to cloth diaper from a financial standpoint or an environmental standpoint. I have decided that I believe, personally, that it is a combination of the two. My generation of moms and dads still need to leave this earth in good shape for our kids, so why not try to minimize our footprint? However, just like everything else, the cost of diapers is on the rise. Why would I want to spend thousands of dollars on diapers until my son is potty-trained, when I could save that cash for college? To me… the decision was a no-brainer!

Our stash of Nifty Nappy cloth diapers

Our stash of Nifty Nappy cloth diapers 

See more Nifty Nappy creations at http://www.facebook.com/NiftyNappy?ref=ts&fref=ts or http://niftynappy.com/!

There is much more to being a “crunchy mom” than just cloth diapering. I won’t be covering all of it, but here are a few more:

– Home-making pureed baby food

– Breast feeding (usually longer than the standard three months)

– Natural birthing

– Baby wearing

On the topic of breast feeding my son, it was an obvious yes! But I didn’t realize how difficult the learning curve could be. In the beginning, we had issues with latching and then we had serious problems with gas – ending up with a SCREAM session after each feeding. But I really didn’t want to give up. There are so many advantages to breast feeding, not just for C, but for me as well. It helps the uterus to contract, helping it to go back down to a normal size; it burns calories, sometimes helping moms to lose pregnancy weight more quickly; it can reduce risk of breast cancer, the list goes on. But some really cool things about the mother-baby bond during nursing that I never knew about before my Doula informed me, strengthened my determination to breast feed for a full year. Did you know that a nursing mother’s supply will change based on her baby’s needs? So, a mother who is sick will produce anti-bodies in her milk so that nothing is passed along to the baby. On the other side, a mother who is nursing a sick baby, will produce the anti-bodies he/she needs to help baby recover. What’s more, as my baby grows, the amount of fat and the density of my supply will change, in order to satisfy his needs. To me, this is just so cool! And I feel so lucky that my baby is a great nurser and that we have a really good, steady supply. I know that there are moms out there who have chosen to formula-feed and I have nothing against them whatsoever! I know that sometimes moms don’t really have a choice. Sometimes, breast feeding is so painful, the mother cringes the whole time and baby can sense that anxiety related to eating. For other moms, supply issues prevent her from being able to nurse her little one. To these moms… my heart goes out to you. Formula-feeding seems much more difficult than breast feeding! When we leave the house, I don’t have to think about how much formula to bring along, or how many pre-made bottles we might need, and I don’t have to worry about that extra expense of buying formula frequently. C’s meals go with him wherever I go! I am so thankful to be able to nurse my little man.

Now, let’s talk about baby wearing. What in the world is this? When I first heard the term “baby wearing”, my mind went to a picture in National Geographic of an African village woman strapping her baby to the front of her, carrying around a basket of fruit or something. Honestly, that’s pretty much exactly what it is (though I’m usually carrying around a basket of laundry)! There are several methods of baby wearing, because there are several different brands of slings to choose from. Personally, I have a Seven Sling, a Moby Wrap and a Wallababy. They all work differently, but they all accomplish the same thing: A hands-free mommy! However, I choose to baby wear for a different reason than most moms. In my last post, I mentioned the pain and damage in my shoulders and my doctor’s advice to “wear” C as much as possible. So, this decision has come out of necessity for me. If you didn’t read my post from yesterday, I will recap. Since C’s birth, I have had a lot of joint pain (probably more than I have ever had before), and my shoulders, specifically, have been in really bad shape. My doctor suggest that I avoid using the car seat as a baby carrier at all costs and that I wear him as much as humanly possible, so that I can avoid possibly needing “new shoulders” in my 30’s. This is one dose of bad-ish news that I have not minded receiving! I now have a great excuse to get extra cuddles from my little man! And in the last few days that I have been wearing him, I can’t tell you how wonderful it is to get those cuddles without a tremendous amount of pain. Honestly, even if my shoulders weren’t in bad shape, knowing how great baby-wearing is, I would do it anyway! It is much easier to calm C when I put him in the Moby and it makes sense. These sling type carriers mimic the tight hold babies experience in the womb and he gets to hear my heart beating. It’s much like walking around with a baby swaddled to your chest. If – big IF – we ever have another child, I will definitely be baby-wearing again.

So… I’m a crunchy momma, though mildly so compared to some, and I am proud of it! Every parent wants to make the best decisions possible for their child, and I am proud to feel that I am making the best decisions that I can for C and for our family. This little boy is our pride and joy, and we wouldn’t do a single thing differently.

If you have questions about anything in this post, please feel free to leave a comment or send me a message. I am more than happy to share with you! 🙂 For now, I leave Zebra hugs and love for all!

A Zebra Mommy

It’s been quite some time since I last posted, and our baby boy is here! After nearly 54 hours of labor, he made his appearance on 12/12/12 at 10:54pm weighing 6lbs 8oz and measuring 20 inches long. He is six weeks old now and simply growing like a weed! Life is bliss with him in it and I am constantly amazed by him. I have all of the sleep deprivation and aches and pains of a new mommy, but living the life of a zebra mommy is definitely difficult, and, I imagine, different from most. 

If you have read my previous blog posts, you are aware of the problems that I have with EDS. For those of you who may not have read my previous posts, I will recap quickly. I have Ehlers-Danlos Syndrome type III, which is known as the hyper-mobile type. This means that I have hyper-mobile joints, which will dislocate and sublux (slip out of place) on their own. EDS is accompanied by chronic pain in the bones, joints, ligaments, muscles… you name it. Basically… it hurts.

During my pregnancy, I had serious problems with my hips and needed to use a belt to hold my hips in place, because they got to a point of slipping out every time I took a step. My wonderful, angelic OB recognized my need for help and quickly got me into physical therapy, which made a tremendous difference. My physical therapist is a saint, and approached me – having never heard of EDS – with several gentle exercises and an arsenal of prenatal yoga. I can honestly say that I would not have made it through my pregnancy walker-free, if it hadn’t been for these exercises. The pain was unbearable and there were several times that I found myself “stuck”… sometimes standing, sometimes sitting, and sometimes, I was crouched on the floor. All of this happened even with my physical therapy, so I can’t imagine what it would have been like without it. 

Now, since having C, I can honestly say that I have seriously “earned my stripes”. My shoulders have been in an uproar, my hips are trying to find their place but seem to be lost, and my every joint hurts, right down to the knuckles in my toes. This is when I have to remind myself that I’m simply not like most moms. My 6 week post partum appointment was a glaring reminder. 

After discussing my recovery so far and all of the positive things that have occurred over these past 6 weeks, I wanted to talk to the doc about my pain. Thankfully, she has always been open to talking about it and has never told me that she didn’t believe me. She asked me what I did for pain before pregnancy. I said that I employed the “grin and bear it method”, explaining that the last doctor I discussed it with simply brushed me off and told me that I needed antidepressants. Now, I do know that they CAN be helpful with chronic pain conditions, such as fibromyalgia and others, but I’ve been on antidepressants; they don’t help. Doc came right out and asked me if I am depressed. No. She stated that I have never seemed even kind of depressed to her, despite all of my pain and frustrations throughout pregnancy. She did admit that antidepressants can be helpful with chronic pain conditions as well, but acknowledged that this is so much more! I can’t tell you the relief I felt in hearing validation for my complaint! This is something I had received only once before and several years ago. We discussed my need for pain management, and she gave me solutions. We talked about the need to strengthen, yet protect my joints (especially my shoulders), and she got me referred back for more physical therapy. She also sent me away with great advice (and warnings) on how to avoid more damage. At this point, the main concern is my shoulders. I have been told to avoid carrying C around in his carseat, and have been advised to “wear” him as much as possible. The result of ignoring this advice and not moving forward with physical therapy could mean needing new shoulders as early as my 30’s. That’s just over five years away! It’s highly likely that I will need new shoulders later on in life anyway, but there’s simply no reason to run into this problem as early as my 30’s, if it can be avoided. So… that’s the goal for now. 

There is so much more to talk about, but these Zebra wrists and fingers are worn for now. Expect to hear from me again soon, but for now… I give you all my Zebra hugs and love! Talk to you soon! 🙂

The Striped Risk

Well, ladies and gentleman… As of today, I am 24 weeks and 2 days along! We were so happy to find out that we are having a little boy and we just cannot WAIT to hold him and welcome him to our family. Life has been wonderful and this pregnancy has actually gone a lot better than expected and our doctors agree!

I have had to start seeing a chiropractor to keep all of my bones and everything in alignment. My right hip started causing me serious issues, and I wasn’t walking very well, so it was definitely necessary. The difference that these appointments have made on my body is absolutely incredible, and my OB ordered a belt for my hips, just in case I need extra support in between, but it hasn’t really been necessary for a few weeks now! 🙂

3 weeks ago, M and I went to have a 3D ultrasound done and that was when my sister found out that we are having a little boy. She passed the word along to both of our moms and they all threw us a reveal party! It was sooo much fun! When it was time for the little man’s gender to be revealed, we were called onto the porch and given a water bottle to hold. We were then given an envelope with koolaid mix in it, which was to turn blue or pink when added to the water. I was far too nervous to poor the mix in myself, so my mother in law did the honors and the water turned blue! We were both so shocked and absolutely elated (as we still are)! To celebrate, M and I went and made our first purchase for our little boy… A carseat and stroller set! 🙂 So, the planning continues, but we still have so much time! It almost feels like too much time sometimes, because we are so anxious to hold this little man… Especially his daddy! He says it’s his turn to carry him.

Well… All of the wonderful things aside, this pregnancy does still come with risk. And I was reminded of this last week at my ultrasound with my specialist. First… They confirmed that there is indeed a little man growing in my belly (he has his daddy’s chin). Next, they took measurements of all of his organs. We were met with some difficulty, because this little guy did not like being spied on and kept kicking the wand on my belly and moved around with his hands in his face, so we couldn’t see him! Eventually, he ended up curled up on top of his legs, hands in front of his face, and completely turned towards my back. Because we couldn’t measure his legs all the way, he measured a little small, but no one was concerned in the least bit except his momma. All I want is a big, strong boy! Anyway… Everything was beautiful and this little boy is definitely active! But after everything, I was reminded to be extra cautious from here on out. Why? Preterm labor risks.

I know… Way to crap on my Wheaties, doc. Am I right? So, I have been having some seriously contradicting feelings. While I have been working extra hard to practice remaining calm, I have also been a bit of a bag of nerves (counter-productive, I know). From what I have heard and read – yes, reading is dangerous sometimes – most pregnant women with EDS/POTS make it 30 weeks before hitting early labor. You might ask “can’t they stop it?” Well… No, not really. How my doc explained it, was that, when the body goes into labor, certain muscles contract, while certain muscles loosen to make room for baby to make an easy journey. Apparently, the problem with EDSers, is that when our muscles loosen, they mean serious business and labor will progress rather quickly! Don’t get me wrong, I see how this could be a potentially awesome side effect. However, no mommy wants a premie. So right now, the focus is keeping me calm and avoiding preterm labor in any form! Honestly, logically, I know I don’t need to be too concerned, because that 30 week timeline, is most typical for women with Type I and II EDS, and a consultation with a geneticist, confirmed suspicions of type III for this Zebra, though she did recommend getting tested for genetic markers with little man once he is here, so that his risk can be assessed. But I ask you… When is the last time you met a logical pregnant woman?

That’s what I thought. So… My emotions tend to take over from time to time, causing me to just wish these next 16 weeks would fly by, so that I know my son is okay and so I can get him here safely.

Here are a few photos of our little man for you! Yes… Still a little creepy, because he didn’t have much fat yet.

You will see him kicking back with his arms behind his head… This is how his daddy sleeps.

You will see his little fist rubbing his eye… My favorite!

And you will see his profile… Note his Daddy’s chin. 🙂

20120821-155104.jpg

20120821-155112.jpg

20120821-155119.jpg

Well… Thanks for letting me share with you! It has been a pleasure. I wish you and yours a wonderful day and send you all off with Zebra hugs and love until next time! 😀

On Being a Pregnant Zebra

It’s been quite a while since I last wrote, and I hope I find everyone well!

For those of you who don’t know by now… My eggo is preggo! Yep! I’m going to be a mommy and am due December 9th!

I just thought I would write a bit about what it’s like to be pregnant with two chronic conditions. Mostly, this is meant to be somewhat therapeutic for me, because I’ve been terribly frustrated lately.

Wanna talk about being tired? Let’s go there! 😉 So… I have two chronic conditions… One makes my blood pressure consistently very low, and therefore, wipes me out. The second causes enough pain during the day, that small actions are quite laborious and I am exhausted afterward. Combine the two and we have… FATIGUE! Yay… not.

Now… Add pregnancy, which already comes with its own variety of fatigue – really, it’s a category all in its own. Now, add a second job. No… Add a second job, which is a night job that involves driving slowly all night long.

This means two things: One, it’s mosquito season! Two, my hip is in for it!

Now… For those of you who may not remember, EDS is a connective tissue disorder. Meaning that the muscles and ligaments holding my bones and joints in place would lose just about any and every beauty contest out there. They just don’t do the job. So, this alone presents its own challenges. For example, my hips are probably no stronger than that of a 93 year old, and even starting at 8 weeks of pregnancy, my most troublesome hip (the right one) was yelling at me to stop that! Because a woman’s hips begin to widen and all of her muscles and joints begin to loosen during pregnancy, this puts my body in a precarious, and slightly fragile state. Needless to say, it’s incredibly frustrating. If I bend over too many times in a day, I end up with a very stylish limp. If I even walk too much in one day or too quickly, I can feel the bones shifting. Don’t even ask me to jog… I feel those bones beginning to pop and grind on their way to a place that they really have no business being!

This wonderful hip dysfunction has opened the door to all kinds of leg pain from my foot, all the way up into my hip bones and lower back. This has made sleeping difficult, as laying on my sides is uncomfortable, yet I’m not supposed to lay on my back, and tummy sleeping isn’t an option! Introduce: the body pillow. I’ll give the thing the credit that it’s due… It does help. It’s just NOT enough. Next stop: pregnancy pillow, here I come!

This has also made it pretty difficult to do my night job sometimes. I don’t know if you have ever really paid attention or thought much about it, but when driving, you use the muscles all the way up into your lower back when you hit the gas and then switch to the brake! I never really understood this until this summer. I mean… Sure, it makes sense, but wow! What work out, when those bones are also constantly on the move! To help ease the discomfort, I bring along a full sized pillow to put behind my back and sometimes, to sit on, but only on the right. This really, really helps, since I’ve begun to notice how crooked I feel when I’m driving.

Now, my hips do not suffer alone. Remember, all of the muscles and joints begin to loosen. This means that the shoulder I injured a while back, has reared it’s ugly, popping and clicking head. This is just another thing that I’m sure is not helped by driving, because it’s not always just a straight shot. No… A lot of times, I’m going into people’s driveways, or around this house, or that business. I don’t mind it, really. The work isn’t terribly difficult (aside from staying up late without any caffeine) and it’s nice to save some extra money for when the baby gets here, but it’s all definitely taking its toll. Of course, at this point, I’m not sure what to blame on pregnancy, and what to blame on 12+ hour work days.

And then we have the beautiful POTS… This guy… This guy is just a liar.

For some very lucky women, POTS symptoms will subside or disappear completely, though it’s sometimes not until later in pregnancy. So far, I’ve been such a yo-yo, that I think my string is getting completely tangled, and one day I might just unfurl, flop downwards and just spin around until someone untangles my string and reels me back up again. For the most part, my tachycardia has been worse. This definitely sucks. And with the hot weather and my body being so bad at regulating its temperature, my tachycardia has been even worse. Thank god for two AC units in the house! Also… For a work truck with AC, since I’m not home much anyway. In any case, hot weather means blood pooling. Blood pooling means swelling, and this means hands and feet that burn and sting. Also not fun, but not terrible to deal with. Fortunately, my blood volume has been wonderful and I am not anemic! Unfortunately, this means MORE blood pooling in my future. I have had a few “burning head, almost black out” episodes, but so far, I’m okay on that front. I’m crossing my fingers, toes, elbows and knees that I am one of the lucky POTS mommies! Wouldn’t that be wonderful?

The only other complaint I have, as of late, is these dreadful headaches. I have been prone to intense complex migraines in normal life, and just last night, I found myself laid out in bed with a full blown migraine and my whole body just hurting. I’m sure this blessed congestion isn’t helping much, but from what I understand, this is a normal pregnancy problem! Yay, I’m normal! No? Well… I was being hopeful. So hush. 😉

Now, I’m sure some of you have wondered (or maybe I’m just full enough of myself, that I assume you have wondered) what exactly are the risks of being pregnant and giving birth with POTS and EDS?

I wondered the same thing, and after doing some of my own research, which mostly terrified me, I presented this question to my doctor (who must be an angel or a saint, I’m not sure which, yet). Basically, the scariest thing that I face, is preterm labor after 32 weeks (on average). Now, some not so lucky women face the risk of hemorrhage in delivery or rupture of an organ or two, but luckily for me, this would be unheard of with my TYPE of EDS. Other than that, I face the risk of severe hip and shoulder dislocation during delivery, as well as the possible need for a c-section or hysterectomy (which is a risk with c-section anyway). I will need medication throughout labor and delivery to help keep my blood pressure up, but that’s fine with me! I’ve heard that it can give you more energy!

After seeing a specialist and talking (in great detail) with a genetic counselor, the risk to the baby is zero. Basically, it all falls on momma! I take this as great news! The bottom line is that, (as my doctors have put it) as long as I’m okay, the baby is okay. So, although we are both going to be pretty over tired still for the next few weeks, we will both be fine! Don’t worry, though! I’m being careful! Trust me… Being a high risk pregnancy is scary enough, so every little pain, or cramp or twitch usually leads to a phone call with my nurse, Kathy. -she knows me well by now. 🙂

Speaking of my wonderful nurse… She is just as angelic as my doctor, who has set me up with a maternal fetal specialist, a genetics counselor, a geneticist, and next… A neurologist! She has also spoken with me in detail about how we can help my joints in delivery by putting me in different positions than normal, and having an OB surgeon on stand by for c-section. (though… I kinda thought they already were…???)

Anyway, that was a bit long winded, but I finally had a few minutes and I thought I would just share my unique perspective, as I find that of a “healthy” pregnant woman just as unique!

Love and Zebra hugs to all!

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! 🙂