Stopping My Medications

Hey everyone! 
I know it has been forever since I have updated this thing, so I wanted to share where I am and what has been going on in my life.  I have been trying hard to decrease the prescription medications I've been on and use primarily supplements and other pain relief modalities like a heating pad, wearing extra layers, OTC medications and supplements, and not pushing myself further that I can physically handle. 
About a month and a half ago, I lost my health insurance and therefore had to go a week without my Butrans (buprenorphine) Transdermal Patches, which are a controlled/opioid pain medication.  I have been on it for 5 to 6 years and thought that was my best and only option for pain relief without negatively affecting my quality of life.  Well, during the week that I didn't have my patches, I decided to try something called Kratom, and it has blown my mind what it has done.
Kratom is grown as a tree and the leaves are ground into a powder, which you can also buy as a capsule.  Kratom has been used throughout the world for hundreds of years for pain management, fatigue, depression, opioid withdrawal, etc. 
I started taking Kratom that week in an attempt to help my pain and help reduce any withdrawal symptoms from being physically dependant on Butrans for so long.  The very first day I tried it, I was blown away.  I had energy, I could think clearer, my pain was less than it was on my patches, I had no withdrawal symptoms, and I didn't feel depressed or anxious.  Other people also noticed the changes and made comments about how much better I looked and acted.  It was amazing!
Now, I am off my patches entirely as well as being off Gralise (extended release gabapentin).  It has felt liberating to stop most of my medications.  Right now, my body feels the closer to my age than I ever had.  I am so grateful that I lost my insurance and had the opportunity to try Kratom.  I think it's safe to say that it has changed my life.

Anyway, I love you guys!  Thank you for reading! :)

Snap, Crackle, and Pop... My Joints

Hey Zebras and my wonderful family and friends!
I posted this picture on my Facebook after it made me laugh pretty hard. In case anyone doesn't get it, I wanted to explain a little. Part of this painful syndrome is dislocations and subluxations. To dislocate something, it has to completely be popped out of place. I have had my left knee completely dislocate twice in my life and have had my elbow and shoulder dislocate. A subluxation is when something gives out or feels like it's going to dislocate, but doesn't. Both are really scary. I have had subluxations numerous times in my life. It's pretty frequent and very frustrating.
Another thing quite common is joints popping and cracking. Alot of times, for me, if I don't crack or pop a joint, I continue to have pain and sometimes it increases. Popping and cracking joints helps with pain. It also helps because joints slip out of place so much. 

Support Groups and Love

I love support groups! There is nothing like talking to someone who completely understands you, your medical conditions, struggles, the importance of certain successes and to share jokes with.
When I had self diagnosed myself with EDS, I looked for and found online support groups. They are mainly on Facebook.
I know talking about illness is hard, especially when talking to someone who is generally healthy. I know many people have a very kind heart and good intentions, however, saying you understand what I'm going through, when you clearly can't understand is a really hard thing for me to hear from someone. I never want someone to feel bad, so I usually don't correct anyone. Despite that, I don't think it's possible to put into words my gratitude to those of you who listen to me, care about me, love me, and encourage me. You keep me going with smiles and joy. So thank you! Thank you for the prayers and kindness!

Meeting people in this support group who understand me and love me in a different way has changed my life. I don't feel alone. I'm able to complain on the support group page and not use my main page for that. They hear about all my dislocations, extreme pain levels, frustrations with medical care, symptoms and side effects. It helps me so much!
Knowing I'm loved and have support makes such a huge difference with everything! I always check to see how many people have read my posts. So thank you for following me!
Gentle hugs!

Finding My Purpose... Again

Growing up, I had a plan... a very specific, well thought out, ideal plan that no one could take from me.  Before that plan was obvious, I was lonely and hurting and felt like no one could help me.  I didn't know what my purpose would be. When I was 10, I accidentally fell in love with sign language through a TV show.  It came into my life on accident and became the reason I fought.  I struggled with some horribly controlling depression as a pre-teen and teen and sign language kept me focused on what could be, as long as I kept going.  Unfortunately, with EDS, that dream was stolen from me. With rapidly increasing dislocations, pain and swelling, I had to step aside and try to heal.  Once accepting that EDS stole that from me, my dislocations and pain in my hands and fingers decreased alot more than I thought they would.  So I was grateful... but then the question came back, "what is my purpose?"  At that point, I hadn't even thought about a realistic alternative purpose in 10 to 15 years!  

I had to go through the grieving process, and it wasn't easy.  My reason for fighting was gone. I started working as a caregiver, just to make ends meet until I could figure out what my purpose, my reason for fighting was.  I slowly started to realize that I loved being a caregiver, but couldn't live off it.  As a caregiver, I was barely making minimum wage.  I thought about going to a program for STNA or CNA but decided on medical assisting.  I honestly thought it was to be able to do what STNAs do.  Anyway, through classes and experiences, I slowly started falling in love with medicine.  It was fascinating! The more I learned, the more I loved it.  I graduated with honors and started working in an endocrinology office.  I started to see, however, that I wasn't a good fit for that office because my passion is helping people and the office's passion was making money.  I left, knowing that it would be a healthy choice.  A month and a half later, I still hadn't found a job, I was running out of my savings, and started feeling like I lost my purpose again.  When I got to my lowest point in awhile, I broke down, gave up being stubborn, and did all I knew how to do - pray. 

I went to a church and went in the adoration room and broke down crying, begging God to show me my purpose.  I begged him to give me hope.  That was on a Thursday afternoon.  That Sunday, I went to church for the first time in too long.  The following day, I received 3 job offers.  God gave me back my purpose.  

On top of that, I had rescheduled my RMA exam 4 or 5 times within the last month because I was scared I wasn't going to pass.  With the 3 job offers came the very obvious need to just deal with it and take the stupid test.  I went in that Wednesday to take it.  I needed a 70 to pass the 210 question exam.  I didn't get a 70... I got a 93!!  With that, my purpose was more obvious than ever.  

I accepted one job offer, working in Physical Medicine and Rehab, working to help patients in pain.  I also can now officially say that I am a Registered Medical Assistant.  

So basically...

Me: 2

EDS: 0

Finally! EDS may hurt me, but it will not destroy me! I'm learning to keep my head high and live knowing that my purpose is here to stay this time.  EDS isn't going to take that away from me again.  

With all my love,

Carley Cook, RMA <3

The Reality of Accepting Ehlers-Danlos Syndrome

Throughout my life, I have had my share of trauma and heartache. It hasn't really been easy.  I have survived so much and am definitely a fighter... but Ehlers-Danlos Syndrome has brought up some obstacles that I never realized I'd face.  Ehlers-Danlos Syndrome has stolen so much from me.

I think one of the things that always presents as a challenge to me is accepting who I am... But not just me, my illness too.  I was raised to be independant, strong, loving and was taught how to have a great work ethic.   I have worked so hard to keep those qualities as a huge part of me over the years. 

One thing I think most people don't understand is that accepting my illness and accepting all it brings as part of me isn't the same as giving up.  Most people also don't know how hard it has been accepting my illness and the reality it brings to my life.  Accepting Ehlers-Danlos Syndrome has really sucked.  I still pray with all my heart that someone can find a better treatment or even a cure.  I think I would cry for days if they found a cure. 

Accepting Ehlers-Danlos Syndrome is accepting life-long pain. 
Accepting Ehlers-Danlos Syndrome is accepting increasing dislocations in more places and more often.
Accepting Ehlers-Danlos Syndrome is accepting the possibly of having to go on disability when I'm young.
Accepting Ehlers-Danlos Syndrome is accepting that it will be harder to find a job that my body can handle.
Accepting Ehlers-Danlos Syndrome is accepting the need for multiple medications to help me function.
Accepting Ehlers-Danlos Syndrome is accepting that some employers may discriminate against me (regardless of any law).
Accepting Ehlers-Danlos Syndrome is accepting all the comorbidities that come with it.
Accepting Ehlers-Danlos Syndrome is accepting that I will have to teach every doctor that treats me.
Accepting Ehlers-Danlos Syndrome is accepting when doctors or staff think I'm making up my pain.
Accepting Ehlers-Danlos Syndrome is accepting that I will always need excellent health care.
Accepting Ehlers-Danlos Syndrome is accepting that my body controls everything in my life, regardless of if I say otherwise.
Accepting Ehlers-Danlos Syndrome is accepting that I will forever wear a mask to hide how I really am feeling.
Accepting Ehlers-Danlos Syndrome is accepting that what I go through grosses out or bothers others and so I can't really talk about it.
Accepting Ehlers-Danlos Syndrome is accepting the stares and judgement from others that think I don't look sick, and therefore I'm lying about my health.

It has been really hard lately.  I know people who love me hate seeing me in pain.  I know people who love me have good intentions.
This is what I really need everyone to understand:
ACCEPTING EDS IS NOT THE SAME AS GIVING UP!

Accepting EDS means I can try to live a full and blessed life for as long as I can.

Weddings

Hey everyone! It's been awhile... Things have been crazy lately and alot has changed.  Lately I have noticed that, although intentions are good, sometimes certain things can be hard to deal with.  I want to talk about something very common at this time in the year: weddings.

Growing up, I loved weddings! I loved the bride's pretty dress, the love in the bride and groom's eyes, the cake, dancing, joy... When I got a little older, I love them even more. I really liked the fact that alcohol gave me a chance to be carefree and dance to my heart's content. I tend to worry too much about other people's opinions of me and it was nice to not have that worry, even briefly. 

The last 2ish years, have been hard and I don't love weddings as much. I think it's partly because my meds don't cooperate well with alcohol and my body doesn't do well with dancing. It's hard... I want to drink and want to dance but I know what will happen if I do either. I'll be sick if I drink alcohol, and will likely have a dislocation or have a joint give out if I dance. In the end, I will have increased pain, which will increase my depression and anxiety.  

I think what makes it even harder is when others try to get me to dance and don't stop after I say that I don't want to.  I just feel weird because I have to say no and know that no one else believes me or understands me.  I enjoy weddings alot more when I can just do what I want to.  I know that the intentions are typically good and people just want to include me, and that, I appreciate.  Just sometimes, my body can't, and it's taking enough energy just to be there.  

Anyway, still include me and still be with me, but if I say I'm not going to dance, please keep in mind that I usually have a reason.

Love to you all!

When One Dream Dies...

Hey everyone! Many of you know that my biggest passion in life is helping others and my dream for about 13 years was to be an interpreter for the Deaf full time.  When I was younger, I had alot of depression and low self-esteem.  I struggled alot with different things.  When I was 10 years old, I fell in love with sign language because of a TV show.  It gave me purpose and gave me a dream.  It got me through some of the lowest points in my life. 

When I was diagnosed with Ehlers-Danlos Syndrome in February 2015 I was still in school at Madonna University in the Sign Language Program.  I had been having really bad pain that had gone way past being manageable.  That semester, I ended up getting an Incomplete in one class, failed one class and got a C in the third.  It was so hard.  I felt like just giving up.  I decided to quit at the end of that semester.  My health was continuing to decline as my baseline pain kept increasing as well as the frequency of dislocations and subluxations (partial dislocations).  I ended up finding a job as a companion/aide working one on one with a young woman who is deaf and needed a friend to spend time with her and take her places.  I would sign for her as much as I could and loved seeing her.  I ended up having to leave that job because the 1 hour drive each way was starting to affect my fatigue and my pain.  I had an interview with an agency in Ohio on April 19^, 2016.  I was excited for the new experience.  I had been making over $10 an hour while working in Michigan but was offered a starting pay of $8.75 an hour while working at the agency.  I was told that if I had some type of medical certification, they could offer me a higher pay.  As soon as I heard that, I knew I had to go back to school, even if for something other than sign language.  

I had to find something I could do that wouldn't require alot of money and time but would also be very profitable and something that I couldn't be replaced by robots and computer programs. I wanted to get my CNA or STNA because I knew it was a short program and was better than where I was.  I looked into Ross College, but they don't have a CNA or STNA program.  I was told about the medical assisting program, and after researching it more, I decided that medical assisting would be a good idea.  

At that point, I had conflicting emotions. I was excited to start something new and to be able to feel successful and like I accomplished something.  Even with the excitement, I also was grieving.  I had to grieve the loss of my dreams of being an interpreter.  I had to grieve the loss of a dream that was 13 years old, a dream that gave me a purpose during the rough years in my life.  The loss of that dream broke my heart in so many ways.  Sign language will always be in my heart, especially since I now found a way that I can still interpret, just not full time.  

Over the last 5 months, I have been working really hard at Ross College in the medical assisting program.  I have been doing so much better than I thought I would.  I was so nervous and realized that I had nothing to be nervous about.  I am really good at this.  I can't believe how good I am at this!  I love it!  The fire in my soul that was distinguished when I was forced to leave sign language is now burning bright again.  It will never take the place of sign language, but I can still love it and have passion and excitement.  Growing up I told myself and everyone else that the last thing I would ever do would be to work in the medical field, and here I am, doing amazingly well in the medical assisting program and looking into a RN program to go into.  That's right, I want to be a registered nurse! 

I found a passion again.  I found what I love.  I found what I'm good at and what will make me happy.  I can't believe how long it took me to find it, but I'm so grateful for it.  Here I am. Almost a RMA (Registered Medical Assistant) and looking into being an RN (Registered Nurse).  Thank God for second and third chances!!

"But those parking spots are VIP..."

I'm currently in school at Ross College. All is going extremely well and I am excited to graduate and start working. Every month, some people begin, some quit and some graduate. Because of that, we go over the rules and "orientation" every month. The only thing that bothers me is the parking situation. There aren't any handicap parking spaces near the school entrance.  The very front row closest to the entrance is unofficially reserved for people coming to look at the school. When I started at Ross, I got specific permission to park there as long as I put my handicap placard up where its visible.  Now, every month, we get told over and over that the spots are off limits to park in. Even though I know I can park there, its really ridiculous when I have heard people complain that I am there and shouldn't be or see people give me a nasty look. Listen, I deserve to park there. I am not breaking any rules or laws by parking there. In fact, they could get in trouble for not accommodating people with disabilities. 

Before you judge someone when they look fine on the outside, stop and think.  Ask me! If I'm not in a crazy big hurry and you aren't condescending, I will tell you about it.  I'll explain.  I promise that it isn't what you assume it is.

I Miss You!

I miss the joy that I had before my diagnosis, when pain and dislocations weren't a daily thing,  when I was partnered with Amway, when I was working hard to be a millionaire, when I *could* work hard, before I was robbed at gunpoint and before I was sexually assaulted. The last few years, life has stolen so much from me. It's not that I'm never happy... believe me, there are times that I am, but the Carley that I was 5 years ago is gone.  I trust less. I worry more. I stress more.

So many times people say that what they've been through has made them who they are and even though it was hard, they don't necessarily wish they could go back and change it.  Well, I wish I could. I would change what my major originally was.  I would've gone into medical in the beginning.  I wouldn't have moved to Westland, wouldn't have met the guy who raped me, wouldn't have trusted him. I would've stayed involved in and worked harder with Amway. I would've started using braces and strengthening my muscles a long time ago. I would've fought harder for a diagnosis sooner. I would've trusted my instincts when I was robbed... I knew in my heart something was wrong but I didn't listen.  I had a gun on my head. 2 of the 3 boys weren't covering their faces... that's not usually a good sign.  

Anyway... the last few years have changed me and stolen from me.  I have grown up and realized that being an adult has a few perks but not many.  I have learned that not all people are good. i have learned that not all people care about others as much as they care about themselves.  I miss when life was simpler. I miss when I was stressed about things other than bills and credit reports. I miss the time when I could see a black man with dreadlocks and not have major anxiety and flashbacks.  

I am grateful for my family and my closest friends.  I am grateful that I finally found my calling.  I am grateful for that. So, it's not all bad, I promise. It's just hard when the bad starts to feel like it is outweighing the good, even if it truly isn't.  Right now, I am so confident that medical assisting is where I should be, that that is keeping me positive.
I am grateful for the doctors who believe and listen. I am grateful for the things that happen that make me smile or laugh.  I know life isn't supposed to be easy, but it will be nice when it's not as hard.  Disability sucks... especially when it's a disability that can't be seen.  Please stay patient. Please be kind. Please be understanding.  I miss who I was and what I had thats now gone.  I miss it and would do almost anything if I knew it would bring back what was stolen from me. 

I love you all.  Thank you for all your love and support! 

Becoming Plastic

Well,  here we are! I've been seeing an occupational therapist the specializes in hand therapy. My cousin met her while getting her own training to be a certified hand therapist and because of the incredible amount of knowledge she has about EDS, she told me to schedule an appointment with her.  I have gone 3 or 4 visits now and am beyond grateful and happy. She has made me splints that help with different things, like keeping my hands and wrists in alignment while I sleep. She also will be measuring me for the amazing silver ring splints next week.

I now have 6 plastic oval 8 ring splints, 2 thumb splints/immobilizers, a splint to wear when I'm asleep or in alot of pain (the second one will be made next week), and 2 buddy splints that link the pinky to the ring finger so it doesn't wander off.  I look weird lol. It feels so good to have that extra joint support though!

Getting the silver ring splints will definitely be a challenge. Overall, the silver ring splints will probably cost around $1,350 plus tax. I set up a gofundme account and have had some extremely generous people offer their help. I've raised around $500 which will help immensely!
This isnt the easiest thing I've been through, but definitely not the hardest. I'm so grateful for all of you and for my OT CHT. You all have helped so much!

Gofundme.com/carleytherese  

I Need Your Help

Hey everyone!
Yesterday, I decided to start a GoFundMe.  I really don't want to ask for help, but feel like I need to.  I have seen a few Certified Hand Therapists who have recommended that I get silver ring splints for my fingers and hands.  I will need 2 splints per finger and thumbs.  The silver ring splints are wonderful.  My hands very easily hyperextend, which damages the joints and ligaments.  The silver ring splints prevent your fingers from hyperextending.  It would help decrease the damage to my joints as well as help manage pain and dislocations.  I have tried on one ring splint and I could tell that it would be a wonderful thing for my hands.
I believe that part of why my hands are so bad is from 14 years of using sign language.  In sign language, you constantly use your fingers, hands and wrists.  It is said that sign language can help with decreasing the chance for arthritis, but obviously doesn't help if you have EDS.  My ultimate dream and passion in life has been helping other people, specifically through sign language within the Deaf Community.  Unfortunately, because my hands are so bad, I can't sign as much as I'd like to.  My fingers dislocate more than any of my other joints.  So, unless I do something now to protect my joints, I most likely will lose the ability to sign as much as I want to.  I have literally been interpreting and had a finger dislocate.  It took me 3 hours to put it back into place and hurt immensely.
The best part about these splints is that they could permanently change the position of my fingers to be closer to where they are supposed to be.
Here is the problem I am having and where you could come in... The splints are approximately $100 each and insurance doesn't cover it. There is only one company that makes metal ring splints.  I really think these splints will change my life and help me alot.  I don't like asking for help, but I need to swallow my pride and just do it.  If you can help me with any amount of money, I would appreciate it so much.  I can understand if you can't because I know everyone struggles with different things.  If you can't help me financially, please pray for me. Prayers also help.
Here is the link for my GoFundMe: www.gofundme.com/carleytherese
Here is the link for the Silver Ring Splint company: http://www.silverringsplint.com/

Please, if you can help, I won't ever be able to thank you enough.
I love you guys and pray you each have a great week!
Carley

Today was a Good Day

Today, my boyfriend, Khiry, started his summer job back up.  He was promoted to supervisor and I'm just so happy for him and proud.  He is such a good man and great father to his daughter.  I'm truly blessed to have him in my life.  So, the morning started off great.
I spent the day at home and found a little energy and decided to use it to clean my car.  I even got a car wash! My car looks so much better now! I'm so excited!  Then, I went to my chiropractor, who is by far the best medical professional I see.  He was the one who originally told me to look into EDS because he was pretty sure that I had it.  It was so great to get all put back into alignment, regardless of the fact that I never stay in alignment for longer than an hour :D.
Today, I also used my creativity to design a vinyl decal for my car.  I used my mom's vinyl cutter and program to make it.  I put it on my car and absolutely love it!  Hopefully now, people will see it and will look up Ehlers-Danlos because they are curious.
On top of everything else, Khiry had a really good first day back at work! I also had a great appointment with my therapist. I think seeing my dog and the sunny weather helped today too.

The Tear

For about 3 months, I experienced horrible pain in my hips.  The chiropractor wasn't helping, the medicine wasn't helping... nothing. I talked to my pain specialist doctor about it and he suggested getting some tests done to see if there was a cause that would show up on any scans.  He explained that he mainly wanted me to get an MRI but in order for insurance to cover an MRI, I had to get an XRay first.  The xray was done and came back normal.  Then we proceeded to get the MRI.  I usually don't have issues with tests because I've gotten used to them.  This MRI was different.  They had me lay with my feet slightly apart and to turn my toes inward.  They then taped my feet together. I was having enough pain as it was and normally, the only way I'm comfortable is with my feet facing more outward or away from each other.  On top of that, there was a fan blowing air and it was hitting me just right where a piece of hair was blowing in my face.  Also, my feet were freezing and they forgot to give me the button to get their attention.  So, it was 45 minutes of annoying misery.
After the MRI, I spoke with my primary care physician and they told me that the MRI showed a tear on my left gluteus medius muscle.  It was a tear that wasn't small nor large, and luckily couldn't get bigger.  My primary physician told me to contact my pain specialist because she didn't feel comfortable giving me all the results.  She said that the pain specialist could give me a better idea of what was going on and could give me more ideas for treatment, if any.  I went in for my follow up with the specialist and we talked alot about what was going on.  Basically, the tear was big enough to cause problems but small enough to not require surgery.  I said that I needed help because the pain was really bad and up until then, it had only been getting worse.  He recommended a steroid shot.  I decided that, even though the thought of a shot long enough to go near the hip joint scared me, it was something I desperately needed to try.  It was a Thursday.  My procedure was scheduled for Monday. 
They are willing to use sedation during the procedure but you must bring a driver.  My boyfriend was going to be my driver but the next day, he was hospitalized for his own health issues and wasn't discharged until Tuesday.  He was supposed to be my driver.  So I ended up not getting the sedative and just went for it.  No fear, right? Well, I am pretty certain that I have never experienced pain like that before.  It honestly was worse than any other pain I have felt in my life.  They do one shot to numb you per shot of steroid.  So, that Monday, I had a total of 6 shots in my hip joints.  My whole body was tense and I was literally crying by the time the third shot happened. 
The numbing shots wear off about a day after the procedure and the steroid doesn't start working for about 3 days so you have a few days with no pain relief and the pain is horrible.  

As of today, it's been 2 weeks since my shots.  I'm definitely feeling alot better! I still have pain and issues but its not as bad in my hips, where the shots were done at.  Thank God for cortizone shots!!

Gentle hugs!

He's in Jail! #Justice

Three years ago on May 18, 2013, I experienced the worst thing I have ever experienced.  Three years ago on May 18, 2013, I was raped by someone I considered a close friend.  I trusted him, obviously more than I should have.  Only a few months before this, I went through major surgery (very end of January) and he was there to help me with things I couldn't do on my own, like move around furniture. I had known him for over a year. I'm not going to get into details about what happened, because there is no point to reliving that experience for the sake of a blog post, but know it was probably the single worst thing I have ever gone through.  Dealing with law enforcement and the justice system afterwards made things incredibly worse and didn't acomplish anything other than knowing that I did everything in my power to get justice.  They claimed that there was insufficent evidence and that's why they couldn't do anything to help me.  So, the last three years, Ihave been scared that I will run into him and everything will just come back and put me back at the beginning.  I have worked very hard to not let what happened to me control every aspect of my life.
A few days ago, I was online searching something and I'm not entirely sure how or why but I landed on a website where you can search for inmates in the Wayne County jail sysem. Something made me curious and instead of ignoring the website, I searched for him.  I was more than surprised when his name came up... twice! He was arrested in December on two charges.  One is Second Degree Home invasion and the other is First degree Retail Fraud.  His bond is set at $20,000 for one of the charges and $25,000 for the other.  He is in jail!!! It may not be because of what he did to me, but nonetheless, he is in jail and I don't have to think about him popping up anywhere for a long time.  Thank God!!! I finally feel like I have a little justice.  He's in jail. Finally!
I just wanted to share this, because its so important to me and my life story.  Hopefully this can be a little reminder that we don't know what other people are going through. I'm a survivor.

Muscle Tears

I have had horrible hip pain for 3ish months now and have tried everything to fix it or even get some relief but nothing has helped.  I started worrying that something was wrong because usually it isn't as hard to get relief.  I asked my pain specialist what to do and he said he wanted me to get n MRI but because insurance won't cover an MRI before an Xray is done, I had to get an Xray first.  The Xray came back as normal but the MRI didn't.  When the MRI came back, my doctor explained that I had a tear in my gluteus medius muscle.  It wasn't bad enough for surgery but still needed treatment. I went in on Monday for injections in my hip.  I ended up getting 6 total shots, 3 numbing shots and 3 with the medication to treat the pain.  My boyfriend, Khiry, was in the hospital so he couldn't take me and the office refused to sedate me if I didn't have a driver.  Basically, I was lucky enough to get the shots while being totally awake.  I have to say, it hurt worsethan anything I've ever experienced.  In the future, I will definitely be sedated for any and all procedures that require long needles going into any part of my body.  Since Monday, the shots have started helping and the initial soreness of the shots has worn off.  I definitely feel a difference in my pain level since the shots.  I still am hurting a little but not anywhere near what it was before the procedure.    I'll keep everyone updated if I get the procedure again... :)

Insomnia but Not Apnea

A month ago I had a sleep study to see if the cause of my insomnia was apnea.  Luckily it isn't.  I have alot of problems with sleep.  I usually can't fall asleep very easily but if I am exhausted enough, sometimes I can fall asleep.  If I am lucky enough to fall asleep, I usually only sleep for a few hours and then I wake up in the middle of the night.  At that point, it's too late to take my prescription sleep aide but early enough where I need more sleep.  Then there are nights that even after I take my prescription sleep aide, I can't sleep. 
Soooo, I went to a sleep/insomnia specialist.  She seemed like she wasn't sure what was wrong with me.  She said that although my symptoms didn't point towards sleep apnea, she still wanted me to do the sleep study.  I was really nervous about the sleep study but I went anyway.  I was told by a psychologist one time that when I get nervous or anxious, its best to move than to stay still, so I moved around as much as I could.  Being nervous, anxious or scared is because your flight or fight response is over firing.  The amygdala is over sensitive.  The best way to calm down is to move because it calms down the amygdala.
Anyway, when I saw the specialist for a follow-up, she said thatthe test didn't really give her more answers.  She said the only thing she can really do is give me a different medication for sleep aide.  I have since tried the new one and it seems to be helping me more, thank God!

Well, It's Been Awhile...

Hey Everyone!
It's been awhile since I have updated, and I'm sorry.  Life is just what it is... frustrating, confusing, annoying... and sometimes joyful.  Winter is starting and for me, that means life becomes a little more like hell. During the cold months and snow, nothing good seems to happen.  My dislocations and subluxations increase greatly and so does pain.  It's also scary because if I slip or fall on ice or snow, I get a little more than a bruise.  After saying all that, I want to say that I'm so grateful for this mild winter. 

I am looking for/trying to figure out how to get a service dog.  I have had a decent amount of people say that I don't need one yet.  Honestly, maybe I don't need one yet, but I will soon.  My dislocations and subluxations are getting more frequent and harder to get back into the proper placement.  A service dog could really help me with things like bracing me if I feel weird, getting medications for me if I can't get it, opening doors, carrying bags for me, and laying on a part of my body to help with muscle spasms/pain.  It usually takes a really long time to get a service dog and have them trained anyway.

Also, today I sent an email to 3 clinical trials for EDS.  None of them are near my house but they are in this country lol.  So many of them were from France. Not sure why it is France, but it is. I am so tired of all this.  I would really love to be part of a clinical trial that could help me.  It just would probably cost alot.

The best treatment I have found so far is is Butrans Transdermal patch.  It gives me a certain amount of medication every hour. It has help alot with pain but isn't a cure. 

Once of the worse things you can say to someone with a chronic condition, especially a rare one with no cure or treatment, is "You will get better.  There's no way you will get worse."  I've already accepted the fact that I will probably get worse... It's not easy, but it is necessary. 

Well, I'm going to get off here and try to get some sleep.  (It's 4:30am!! o.O )
Carley

Wake Up!

Wake up! Wake up!
It's time for the day
But wait,
You couldn't sleep
because of all that pain
During the day
you're exhausted
at night you are too
but sadly your body can't stop aching
your mind is racing
all you want is to be sleeping
staring at all your medications
dreading each one
wishing life could be normal
you could function
without this much help
there's heated blankets in the winter
so your joints don't give up
There's air condition in summer
so your body doesn't get mixed up
there's muscle rubs
epsom salts
supportive shoes
small purses
doctor appointments
hospital stays
and stay in bed days
So, don't get up
Stay asleep as long as you can
stay encouraged
stop worrying

My Life

Hey everyone! I know it's been awhile.  I hope everyone has been doing well.  I have been having some good things, some not so good things and some confusing things happening in my life.
Probably the best thing right now if my amazing relationship.  I'm so grateful to have someone in my life like Khiry (it's pronounced like my name, just without the L).  He is kind, loving, respectful, silly, and just amazing.  He treats me like a queen and isn't afraid to tell me that he loves me and cares about me.  Most importantly, he isn't willing to give up.  One of my biggest fears is falling in love with someone who ends up leaving because of my health issues, and he has already made it clear that he isn't planning on going anywhere.

I also recently got a Tilt Table Test which tests for Dysautonomia or POTS.  It came back negative, and it was really frustrating.  I have been really dizzy off and on lately, to the point where I have needed to use a cane the last few days.  With that test coming back negative, it really messed me up.  I really thought that that was what was going on, but it turns out that it isn't.
I also recently got a EEG, which tests for seizures.  That test also came back negative.  I was super happy to hear that it was negative.
Today, while at Sam's Club, I got a free hearing test done.  With all this dizziness, I wanted to make sure that I didn't have hearing issues that could be effecting it.  Luckily, my hearing came back normal.  :)

I've had some subluxations and dislocations alot lately.  Unfortunately, when those happen, no pain meds can really fix it.  Right now, my BFF is the Salonpas muscle relieving gel.  It helps relax my muscles and kinda pop things back into place.  

I found a new psychologist that I really like.  She listens to me and is very helpful. I'm very grateful for her!
I also really like my job right now.

I started a new blog that will be about poetry.  I will be posting my poems and some song lyrics.  The blog is GiveYourStory.blogspot.com  Check it out if you'd like! :)

Well, I will talk to you all soon!  Please let me know if you have any questions or comments.  I can answer questions in a blog post depending on the question and if you would like it to be on here.  I wouldn't share names. :)
Take care, everyone!

So Far It's Helping

I saw a pain specialist about 3 weeks ago. He was amazing. I told him that I have Ehlers-Danlos Syndrome and he replied "do you have the dislocations and hypermobility? I have treated patients with EDS before and know that it is an awful condition." I can't put into words how excited I was to hear him say that. Finally a doctor that I don't have to educate! After talking about what's going on, he gave me some options.  One option was to try a newer form of a medication. Basically, i wear this little patch for 7 days and then change it. So far, it's working fantastically.  It keeps my pain under control. I'm not pain free and I still deal with dislocations, but my pain doesn't spike like it used to! It has given me so much hope that I can live a life with a little more pain control.  My consistent pain level went from a 5 down to about a 3. I've been able to stop my tramodol and hopefully will be able to stop other pain medications too. If i can get to a point where I only take the other medications every once in awhile, I will feel so much better. I'm so grateful for my pain doctor's understanding and knowledge.  So far he has been the best doctor I have seen.  So excited for pain loss!

Yes, I'm sick and I hate it.

I think one of the hardest things about getting a diagnosis that is chronic and lifelong is accepting the reality.  Yes, I am  sick.
I have worked really hard to accept that fact. There are definitely things that make me feel better and things that make me feel worse and this journey has been an experiment in trying to find out what those are. I haven't totally accepted that I'm sick yet.  I had to wear a heart monitor the two days ago in an attempt to figure out why my heart rate is always over 100. Wearing  that monitor reminded me that I am sick.  It was hard.  On some levels, accepting that this will never completely go away makes me feel defeated. I can try to feel better but I'll never be normal and I'll never have total control.  Even if I can find ways to decrease my pain, it will always still be there on some level and the dislocations will always happen. That can be hard to accept.

Accepting that I'm sick is totally different than my family and friends accepting that I'm sick.  It's been especially hard for some of the people closest to me and I  completely understand why.  Why would anyone want to accept that someone they love is chronically ill? Most people want to try to fix it.  They want their friend or family member to feel better. Who wouldn't want that?
Accepting that I'm sick doesn't mean that I'm not going to try to feel better.  Accepting that I'm sick is simply understanding my reality and learning to love myself for who I am. Accepting that I'm sick is simply a way to stop fighting my reality.  I don't want to be sick, but I am. Accepting that is healthy.  Once i accept it, I can move forward and find the best ways to feel better.  So please, try to accept it.  Accepting doesn't mean I'm giving up.  It is the first step to healing and finding peace in my chronic illness. 
I love you all very much. Thank you for following me! It really means more to me that i can describe.

Looking Different Than I Feel

There are so many days that I feel like total shit. Yesterday, I slept from 2am until 8:30pm and then went back to sleep around 1am. I woke up again around 3am with acid reflux so bad that it caused me to throw up. After staying up for about 45 mins, trying to get things to calm down, I fell back asleep in a chair. I woke up around 6 and went to my room. Of course I was in alot of pain from sleeping on a chair but it was better than having a part 2 of acid reflux.
I spend a lot of time trying to look better than I feel. If I looked as bad as I feel, most people would be scared of me or think I was being beaten. I have constant pain. Most people can't understand that. It's like the pain you get from spraining your ankle, times 3, all the time, plus dislocating other body parts and having tight muscles too. My muscles try really hard to compensate for my weak ligaments, tendons and skin, but my muscles are effected by my faulty collagen too. Every cell in my body is effected by my faulty collagen.  That's why it's near impossible to find a cure for EDS.
I like to smile, wear makeup, and dress cute. I wish so much that I felt the way I look. There's, unfortunately, a lot that I change with EDS. Even if I lose weight, my skin will most likely not go back. My collagen is too weak for that.
Anyway, don't let my looks deceive you. I'm really hurting and falling apart.
Gentle hugs.

Some Funnies to (Hopefully) Make You Smile

Things We've Heard - Doctor and Nurse Version

Here are some things we have heard from doctors and nurses who have treated those of us with EDS. . .

Most of these are pretty ridiculous.  We have to pay for a doctor to give us what we need, like prescriptions, but they don't ever seem to know anything about what we have or need.  I can't explain how many times I have literally educated a physician about my diagnosis!

"What's EDS?"
"We don't know what's wrong"
"If it hurts don't do it"
"You'll get happier when you get older and your joints lose their elasticity."
You'll outgrow it!
EDS doesn't cause fatigue
He's just depressed and needs anti-depressants.
Ehlers downlos syndrome, Do you have down syndrome?
"A herniated disk has been causing your back pain (from age 13 on.) Since nothing elae has worked to fix that let's do steroid injections."
"You'd know if you have EDS. You would have had an aortic dissection by now. Since you haven't we're not testing or treating you. I'm the doctor and I'll decide what's best for you."
During an ortho appointment. Dr. "How long can you stand?" Myself "I'm not sure." Dr. "Well I need a number..."
Your skin isn't stretchy enough to have eds
 There's nothing you can do about it, you just have to get on with it!
 "You're too young to be in this much pain"
Why do you WANT this disorder!?!?!?
 A heart rate of 174 just from standing up is not that bad.
 You know, this is rare, you probably don't have it. I'm sure you don't.
 Its a mindset. It's all in your head
(From a former boss) "can you provide me with a schedule for your pain? Maybe that way we can accommodate you at work."
 You can feel better all you have to do is try harder.
 Ribs can't dislocate.
 You seem to enjoy being sick and having so many medical issues.
 "OMG how do you bend like that? Can you show my colleagues... They will probably never see this again in their careers"
"can we take photos?"
"I've never seen a neck that flexible in my entire career!"
 (Just calling it ED really gets me... I am a woman, erectile dysfunction is not the problem at hand.) 
"oh, are you not better yet??"
  "Could you spell that for me?"
 "Could you give me the weekend to research this and come back Monday?"
 "You have EDS?" "Oh Cool... DO something!"
 That's so cool! Can you do it again?
 Stop dislocating your joints, then you won't have joint pain.
 Have some Vicodin, sleep it off.