Why Diagnosis is SO Important

I was diagnosed with EDS III in July of 2015. I was scared. I was tired of doctors telling me I was fine when i was in unimaginable pain. I was frustrated. Angry. Hopeless. So why is diagnosis so important? Well, being told to my face that "no, you're not imagining it, it's real" gave me the strength I needed mentally to fight back. 

Before that point in time, I was constantly told it was MY FAULT that I felt sick. I was responsible for how I felt. On my bad days I was told I was inconveniencing even my closest friends. Many of them decided being my friend wasn't their cup of tea. I got really depressed. "Why me?" was consistent throughout my day. People told me it was all in my head. Many thought I was faking it since no doctor could find anything wrong with me. The funny thing is some people still think I'm faking but that's another story for another time. 

Last July, I walked into the genetisists office with low self esteem, anxiety, and very depressed. I underwent the testing. They poke you and praud you. By then, I was used to doing testing. I mean they'd tested me for just about everything else in the book. Brain tumors, blood clots, fibromyalgia, and even some rare diseases that scared the crud out of me and still do. The genetisist had a file (mind you it was in a 2" binder) that contained every piece of medical history we could get ahold of. From ER visits to school nurse documentation to my dentist X-rays. We spent several hours going through it together (me, my parents, the geneticist, and several of his students that were observing my case). Then it was time for the Brighton Scale. They had me bend over to touch the floor, extend all my limbs, asked me which joints I could pop and how, and messed with my fingers, spine, and jaw. Since he had students in the room, my geneticist verbally pointed out some "ideal EDS characteristics" and my heart sank... After the physical exam was done, he looked us straight in the face and said "You have Ehlers Danlos Syndrome, no doubt about it". 

After that moment, I was flooded with emotions. i think I can recall crying in his office actually. We had done all the research on Ehlers Danlos Syndrome already so I knew exactly what this diagnosis meant. I would spend my life slowly degenerating my tissues. I would be in pain most if not all of my life. I risked dislocations, Skin tearing, muscle spasms, organ rupture... I have a 50% chance of passing it on to my children... I have POTS and my autonomic system is weak. Hardly anyone knows what I'm talking about when I mention my disease. I knew what I had to expect.

I spent the next 2 days when we got home in my room. I cried myself to sleep at night. I hardly moved. I didn't talk to the few friends that had stuck by me. My parents were worried I was becoming more depressed with the circumstances. Then, I snapped out of it. I accepted my fate. I mean, EDS was tossed around as an idea for about a year before I got the diagnosis so it's not like it was a surprise... I just needed time to let it sink in. A bit of a pity-party. And that's OKAY. It's necessary to deal with it. And I did. 

So you may be wondering why this post is titled "Why Diagnosis is SO Important" if I'm talking about crying and being depressed. Well, after those 2 days, everything changed. 

I finally had a Diagnosis. I knew exactly what was wrong with me. Scary symptoms like loose joints and muscle spasms were explained. I was no longer scared or jumpy at my condition as it evolved. I could do research. I knew the risks and how to help myself avoid symptoms when possible and especially I knew what to do when they occurred. I wasn't scared that I was dying. I wasn't scared that by being in pain there was serious internal damage. I wasn't scared that my heart wasn't working right when I had chest pains. I got the proper medication!!!!!!!! I was put on narcotic pain meds for my flare ups and a special muscle relaxer for my spasms that's made for EDS patients. I got physical therapy for my sore joints and weak body. I finally had help.

When people at school or my parents friends asked what was wrong with me, I had an ANSWER. I could respond with my diagnosis and NO ONE could take that away. I knew I wasn't faking. I knew it was real. And that gave me hope. Because now, NOW with a diagnosis I could find others like me. I could contact others with EDS with my questions, concerns, and my support. And best of all I could receive support. The EDS community welcomed me in so quickly and I made many friends very quickly. 

Without a diagnosis, I would still be severely depressed. I'd still be unmedicated, unhelped, and unaccepted. Diagnosis changed everything for me. All for the better (once I accepted it). 

If you think you could have Ehlers Danlos Syndrome, do some research. Find a diagnostic geneticist and get the testing done! It's worth it to KNOW. And the security that comes with knowing is worth more. 

Yours Truly,

Broken but Beautiful 

SUMMER updates

So, I haven't posted in a long time but I have quite a few updates!!!

About a month ago I underwent a full scale of autonomic testing at Stanford with Dr. Geradeh (forgive me if I spelled that wrong). This included a sweat test, tilt table, and several others. Basically they confirmed I have POTS/Dysautonomia (which we pretty much already knew). However, we also discovered something. When the tilt table went up I began to have extreme pain in my legs and feet. The doctor said that the more I felt the pain the lower my blood pressure dropped until I almost passed out. They had to stop the test prematurely for my safety... But this led to the diagnosis of neuropathy. Which SUCKS.

In other news, I recently saw my neurologist at UCSF. Dr. Strober is always hilarious honestly and he has great manners with being considerate of patient wishes and treatments. I was taking a medication called SPRIX (as needed) for my migraines. Basically it's a liquid torridol nasal spray. Loved it. It kept me from getting hip injections thank God. But unfortunately the makers of SPRIX have stopped producing it so I went in to see about other options. He prescribed an anti-inflammatory pain medication and told me that if the migraine doesn't subside that instead of hip injections (because I have confirmed POTS) I really should be doing an IV with a bag of fluids EVERY migraine. Now this worried us just because I already have quite a bit of vein scarring from IVs but hey, the docs orders will be followed.

I had a migraine (ironically) on the way back home. A whole 4 hour car ride. Perfect. So we went straight to the urgent care facility and I got hooked up to an IV. Honestly, the pain meds kicked in a lot faster with the IV vs the injections. And I didn't have to deal with the bruising or cramping sensations for days after. The fluids helped A LOT, I think. Usually I feel dazed the next day and have dry mouth and am extremely tired, but the next morning I was pleasantly OKAY. That's new. Me likey.

In other news: I GRADUATED HIGH SCHOOL. Yes, I did it. Diploma and all. I got to walk at the ceremony even in the 100 degree heat and I had my wheelchair to sit in during the speeches so that my back wouldn't go out on me. I'm officially DONE. And it feels oh so good! I plan on taking a semester off next school year and instead volunteering my time at the local middle school helping with their musical. I really just need the semester to focus on healing and strengthening my body.

Speaking of strengthening, I have lately been attempting to go to the gym and actually eating right, gasp, I know, big shocker. But, I really do think it's time I took hold of my health and started working towards a stronger body. Maybe with more muscle tone I won't have to worry about dislocations as much. And hey, if I can fight through the pain to get in shape, I can do anything! So, here's to trying!

That's about all the updates my fingers can get typed out for now. I'll try to be more current with my updates! Thanks for reading!

Yours truly,
Broken but Beautiful

Bad News Barer

Alright, so we saw the surgeon and it looks like I will NOT be having surgery. Most would think this is great news, well, I'm heart broken. The doctor looked at me with sad eyes and said "there's nothing I can do for you here, what you have is real and painful and I am so sorry. Please don't do anything drastic, please do not get your hopes up for the GI." 

I'm devastated. This pain is too much to bare... It has taken my life from me. I'm back on home hospital and I'm missing out on my senior year. I'm missing out on my friends. I'm missing out on making memories. I'm sorry I didn't post the past few days, but I was honestly so crushed by the news I didn't know how to form the words until now.

The surgeon gave me an Irritable Bowel Syndrome (IBS) packet and said goodbye. I. B. S. Are you freaking kidding me. I'm angry and frustrated, not necessarily at him, but at life for doing this to me. It's most likely gastroparesis or the lack of muscle function in the stomach now... Which there's no cure for and treatments don't always work. The pain will most likely effect me for months, maybe even years. I could have to go on tube feedings or do other treatments that almost seem worse than the pain... It just seems unfair. And it is. All of it is. I was 14 when I first showed symptoms. I went 4 years undiagnosed with EDS, almost 5 before I got POTS and Dysautonomia, and now I'm 5 months into this new struggle, undiagnosed, and quite frankly, helpless. I'm 18. I'm just a kid... This isn't how my life should be.

I realize this is sounding like a pity party, and I guess it kind of is. And before you jump to judge me about how I'm so negative and I'm looking at it the wrong way, imagine being in my place. Having your life, your friends, your decisions, your DREAMS snatched away by the hands of illness. I'm pissed. I'm sad. I'm bitter. I'll be okay.

Sometimes being positive is harder. It takes so much strength and energy. Strength and energy that I do not have right now and I honestly don't care. It's my disease I can cry if I want to.

yours truly,
broken but beautiful

Beach Day

Finally got the opportunity to go to the beach today and I did really well. I went through this outdoor animal/hayride/corn-on-the-cob place and I had a really great time with my family and boyfriend. I didn't need my wheelchair and even got to go on the hayride (bumps and all) without getting sick. It was quite the miracle after the week I've had.

Next we went to the beach and I walked down into the sand and boy oh boy...it felt good. I layed out attempting to become any other color but pale and we even built a sand turtle. It was overall a great day.

When it came time for lunch though, I was tired and worn out (figures). I wasn't too hungry, but because everyone else got it, I ordered fish n' chips figuring that the boys could finish up my left overs. I got about 3 fries in and OH. BOY. Was I in trouble. I immediately had a horrendous cramping sensation and felt dizzy as ever. I asked my mom if I could go out to the car and lay down and that was the end of my coastal adventure.

I'm still having a terrible time with food. My stomach was okay today all up until that point. I had a banana muffin and some fruit prior, but nothing heavy like the meal at lunch. It was really discouraging to feel that pain again after finally feeling some relief from it. I see the surgeon tomorrow to make the final decision about surgery... Wish me luck!


Yours truly,
Broken but Beautiful

Feeling Crummy

So, I'm having a hard time the past few days (obviously if you've read my last few posts), but it just feels like I'm getting weaker and worse as time goes on... Whatever is wrong with my stomach is ruining my life. It's like this crampy, achey, burning sensation almost constantly now. It used to just happen when I eat, but now it just flares up when I ingest anything. I'm really starting to worry just because if it's gastroparesis instead of my gallbladder, that means I can't just fix it with a surgery and a change of diet... It's gonna be a long time suffering and doing treatments that don't always work.

Today, I am attempting to go hang out with some friends, though I started getting ready at 11 and am only halfway done because I keep having to take breaks. I'm honestly exhausted. Here's hoping I won't need my wheelchair tonight and if anything I can just use my walker. I honestly hate hate HATE using my supporting devices in public. People's stares don't really get to me anymore, but it's the feeling that I'm inconveniencing the people I am with that gets me. I'm often overwhelmed with the anxiety of the idea that the friends or family I'm with would be having more fun if I wasn't there to hold them back. It's not a fun feeling, honestly.

This morning I was invited out for something, but as  had already made plans for tonight I had to say no, so that I can conserve my energy and be able to fulfill my plans this evening. It did however make my entire morning that I was thought of. Even if I have to say no because of weakness, not feeling well, being in medical care, or just because I already am doing something and have to save energy, I will ALWAYS appreciate the invite more than you could know. It reminds me that I'm not forgotten and that people outside of my house still care about me even though I've disappeared for a while to try to get better. So thank you for that today, Lord, because I needed it lol. 

I hope you're all having a beautiful Saturday and that those of you with disorders like mine are having a low pain sun-shiny day :)

Yours Truly,
Broken but Beautiful

Lonely Home School Girl

I hate being on home hospital. Everyone at my school gets to go to the assembly today and I am out of breath and blotchy skinned with low blood pressure all because I took a shower (with my mom's assistance at that). I miss my friends. It's so, so hard for me being alone all day, everyday in addition to feeling like crap constantly. That's the worst part about being sick, I think. It's hard to have friends.
At school, you can hang out with a lot of different people throughout the day. You get so much social interaction. But for me? I sit waiting for a text most of the day from people who are in classes People who don't always remember I'm waiting. And that's okay. I'm not ever-present in their life during the day anymore. I understand that sometimes life just gets away from you...

People think that being sick gives you some kind of superpower to make friends. Well, it doesn't. The truth is, unless you're dying, no one cares. It's not that they're against spending time with you while you suffer, they're just for themselves enjoying life. It's the truth I've learned in the past 4 years. But that's okay. I accept this truth.

I know I have friends. I have a great boyfriend, too. It's just that sometimes I wish I'd get a random text from one of those friends saying "thinking of you! Let's hang out soon!" It would honestly brighten my days so much being able to hangout with friends. And luckily for them, I get tired really fast so they wouldn't even have to be here more than an hour lol. For now, though, I spend my days reading and playing Sims. Up next I have War of the Worlds, one of my all time favorite classics. Honestly, I love anything by H.G. Wells. He's my favorite author. At least I have H. to keep me company during the days.

Well, sorry for rambling, I know this wasn't really related to my health, but its more about my emotional health and how I'm doing. How I, the person, am doing. Which, for now, I'll say I'm doing okay. (Because we all know that "fine" isn't fine and I don't wanna be too obvious). Thanks for reading.

Yours truly,
Broken but Beautiful

What it's like to have a Hida Scan (Gallbladder)

On Tuesday, I had my Hida Scan to check the functionality of my gallbladder. I had been looking online to see if anyone had blogged or posted about the experience, but sadly came up short. So, I thought I'd make a post about my experience to share with the interenet world.

I started the night before by not eating anything after midnight (My test was at 8 am so that wasn't too hard). Once I got to the hospital, the first thing they do is bring you into the test room where there's a big machine (similar to an MRI, except that it's open) and have you lay down on the table. I had a pillow waiting for me, though I had brought my own just in case, and a pad to support under my knees while I laid there for an hour or s for the scan.

Next, they started an IV (Guess what, it took 3 tries, 2 nurses, and 2 heated blankets) and injected a radioactive highlighting solution. (Doesn't hurt at all). After that, they slide the table under the machine and have you lay still for about 45 minutes to an hour. I chose to sleep for a bit and got in a little nap, YAY!

Then, they'll start a drip  of a medication that makes your gallbladder contract and makes the muscles work so that they can look at and watch how much it is actually functioning. Now, I'm not going to lie, this part was very uncomfortable for me. I had a cramping sensation that lasted the rest of the procedure until after I ate something an hour later. It wasn't that it was painful, it was just a discomfort with an aching sensation. However, the whole test was pretty easy for me, all I did was lie there doing nothing. (and snoozing!)

If you're having a Hida Scan anytime soon feel free to ask me questions via email (Comment for info) or call your clinic as I'm sure they'll be happy to help!

Stay well and have a low pain day my friends.

Yours truly,
Broken-but-Beautiful