so for those of you who follow me on twitter you know that I make a habit of not getting myself down when I have medical problems. I try my best to keep a level head and keep my spirits high. I'm so sorry guys but to tell the truth, the past 3 days have been SO hard... I've cried countless times because I'm just sick of being in pain. It's not fair you know? Every waking hour I hurt. Pain is a constant in my life. And it just gets to the point where you get sick and tired of being sick and tired and you just want to give up. But that's not an option. We don't get to choose to be strong or weak. Someone told me the other day that I'm an "inspiration" and that because of me they're stronger and can deal with what life throws at them. I'm not an inspiration, guys. I'm a human being in pain. If I had a choice, I wouldn't do it. I would never get out of bed or do anything. But with or without me life is going to move forward. So I get up. I show up. And I don't give up.
That SO doesn't mean I don't want to, though. I think about quitting and just getting back in bed 100 times a day. So many people have no idea what it's like to be in pain 24/7 365. They're lucky. In many ways I'm lucky too. After all I'm not dying. I'm just disabled. Painfully so. And the consistent pain honestly just makes me depressed. There's nothing to be done about it. Nothing helps. Sometimes you really just have to mourn over the life you could have known. One that's pain free and full of adventure. One where the friends you grew up with didn't leave you because you got sick and they didn't understand. One where your joints don't snap and pop when it's about to rain or you see friends more than doctors. Sometimes you just have to be sad. And that's okay.
Tuesday, December 27, 2016
Monday, August 1, 2016
ER again
So I was back in the ER twice this past week with a status migraine which is still not fully gone... I was left in the waiting room of the ER for 5 hours and I kept passing out, one time in which I actually THREW MY NECK OUT. They brought me out a sheet and tape and left me there. I was livid but mostly in pain. That was about hour 3 too. I was in my wheelchair thankfully so it could have been a LOT worse in those chairs they have there.
Once I was actually back in the ER they put me in one of the recliners in the hallway where all the noise, lights, and commotion happen. My head had had enough I was so nauseous and the head splitting pain made me finally break down into an anxiety attack. My mother did her best to calm me and all but it was still a horrific experience. They did an ultra sound IV that HURT so badly I had them take it out and even with the nausea they just had me chugging water. (Didn't end well for my tummy). They called my neurologist finally at UCSF and while that happened they gave me IV zofran (prior to taking it out), a pill of tramadol, and a shot of Immitrex which HURTS. Oh and then they didn't even put a bandaid over where they gave me the shot and I started bleeding everywhere.
Long story short I'm very unhappy with how it went.
Once I was actually back in the ER they put me in one of the recliners in the hallway where all the noise, lights, and commotion happen. My head had had enough I was so nauseous and the head splitting pain made me finally break down into an anxiety attack. My mother did her best to calm me and all but it was still a horrific experience. They did an ultra sound IV that HURT so badly I had them take it out and even with the nausea they just had me chugging water. (Didn't end well for my tummy). They called my neurologist finally at UCSF and while that happened they gave me IV zofran (prior to taking it out), a pill of tramadol, and a shot of Immitrex which HURTS. Oh and then they didn't even put a bandaid over where they gave me the shot and I started bleeding everywhere.
Long story short I'm very unhappy with how it went.
Thursday, July 7, 2016
Amusement Park Madness
Are people at amusement parks BLIND or just plain stupid?? My family is at Universal Studios with my boyfriend and I am in my wheelchair since getting around the park on foot would be impossible. I've been stepped on, nudged, elbowed, cut in line, and insulted.
I was in the bathroom (on foot) next in line and apparently I was walking too slow for the woman behind me because she scoffed in my face with a glare and took my stall. I was and still am infuriated. How dare she,.! It was obvious I have mobility issues and I was in excruciating pain trying to hobble to the stall. It was quite the damper on my fun day.
Being in the park in general has been very hard on me. I walked through the new walking dead exhibit which took about 30 minutes (killer on my hips) and have been riding several trams to get to the various levels of the park (all of which took extremely long to arrive and depart).
Aside from that I also have severe crowd anxiety. Others that have been in a wheelchair KNOW what im talking about. Being in a large group of people at such a low height is super intimidating and scary at times. It's really easy to get bumped or hit by people who just aren't paying attention. Not having control over when and where I move is also very stressful and even though my boyfriend, bless his heart, is doing a wonderful job, my anxiety is still outrageous and I keep freaking out on him. It's really frustrating not having control over where I am in a sidewalk or how fast or where I move.
I was in the bathroom (on foot) next in line and apparently I was walking too slow for the woman behind me because she scoffed in my face with a glare and took my stall. I was and still am infuriated. How dare she,.! It was obvious I have mobility issues and I was in excruciating pain trying to hobble to the stall. It was quite the damper on my fun day.
Being in the park in general has been very hard on me. I walked through the new walking dead exhibit which took about 30 minutes (killer on my hips) and have been riding several trams to get to the various levels of the park (all of which took extremely long to arrive and depart).
Aside from that I also have severe crowd anxiety. Others that have been in a wheelchair KNOW what im talking about. Being in a large group of people at such a low height is super intimidating and scary at times. It's really easy to get bumped or hit by people who just aren't paying attention. Not having control over when and where I move is also very stressful and even though my boyfriend, bless his heart, is doing a wonderful job, my anxiety is still outrageous and I keep freaking out on him. It's really frustrating not having control over where I am in a sidewalk or how fast or where I move.
Monday, June 20, 2016
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
Friday, June 17, 2016
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
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
Thursday, March 24, 2016
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
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
Monday, March 21, 2016
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
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
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