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 5 Percent of Pain Relief

One major thing I have learned during all this craziness is the 5 Percent of Pain Relief. Most people think "chronic pain= only relief is narcotics." They also think, "pain relief= keep increasing dose until all pain is gone."
For me and all others with chronic pain (especially EDS), both are completely incorrect. Chronic pain needs more than narcotics and medication. There's something called the 5 Percent Rule of pain relief. 
The 5 Percent Rule basically says that, no matter what, pain medication won't take all the pain away. Because of that, we have to find other things to provide pain relief such as taking a warm bath, taking a Jacuzzi or warm shower, laying down, heating pads, Icy Hot, massage, electric/heating blankets, swimming, TENS Unit, E-Stim, ice packs, and going to a chiropractor. Each thing causes a small our medium amount of pain relief. Basically, medication might cause 50% relief, and you use a combination of the other things that each equal a certain amount of relief. When you add everything up, you have a larger percentage of pain relief than you would with just medication. It's pretty fascinating!

Me and the D Word

I can't believe that this topic has even been part of a conversation. I've never, in my entire life, thought that I would even think about me needing to be on disability. I'm not going to apply soon, but it's a serious discussion right now.  "How long can I do what I love and be who I am without needing to be on SSDI?" has really been a question strongly thought about.
I'm working really hard to exercise, see the right doctors, and keep my thought process positive so I can do what I love for as long as I physically can. My fear is pain and dislocations. I've already experienced my left middle finger dislocating about 4 within 2 weeks, one of those times being during a sign language class. It can be easy to put it back in sometimes and other times its quite impossible. During that sign language class, I couldn't get my finger back in place for about an hour and a half and ended up needing ice on it for 5 hours after.
I don't like the discussion about SSDI because I'm a fighter. I'm a stubborn, determined, pain in the butt, who doesn't know how to truly quit something that has captured my heart. My prayer is that God allows me to live my dreams as long as possible. Once my body stops me and forces me to quit, I will quietly bow out. Until then, it's still a conversation crucial to have.

Gentle hugs and lots of zebra love!

Isn't This What Every 20-Something Does?

No, really...? Isn't this normal? I mean, I can't be the only 22 that takes this at least twice a day. Here's a sad thing I'm starting to realize more and more: I will never get to be a normal 20-something. That's one of the hardest things to accept about this diagnosis. I've never been clubbing, I've been to a bar to drink once, I can't stay up too late because my medications don't like that. I can be having the best time and have a joint almost dislocate, or have pain pop up and decide to end the party early. My purse is heavier, mainly because I am scared to go somewhere without my necessary medications and then get in a situation where I need them. There are certain ones that cause very nasty "withdrawal" if I miss one dose. So here it goes, 10 1/2 pills before bed and a little prayer that my acid reflux behaves tonight so I can get sleep.
Be your own advocate.
Gentle hugs.

When Pain is Stronger than Pain Medications

This had to be the worst part of EDS Hypermobility Type. Of course everything is hard with EDS Hypermobility Type, but this is so hard. I woke up this morning with alot of pain all over. On mornings like roots morning, I'd much rather stay in bed, in hopes of avoiding extra pain. However, this Sunday morning, I needed to get my butt to church to praise God for giving me life and helping me through EDS. I still have pain, even though I took all the pain medication I'm allowed to. The strongest thing I have (tramodol) made a small dent in my pain level, but because it wasn't the first thing I took to ease pain, I now have pain, can't sit still and feel a little out of it and loopy.  My brain feels super distracted and totally not normal. I wish pain medication was always stronger than pain.  Unfortunately, as those of us with chronic pain know very well, it doesn't seem to work that way very often.

Life Changing Diagnosis

Yesterday, I received the life changing diagnosis that will impact my life greatly.  I'm actually excited to have this diagnosis because now, the search for an answer to the big picture is complete. Now, I don't have to wonder what's wrong, now I wonder,  what is the best way to treat it.
So, are you ready? The official diagnosis, by a geneticist at University of Michigan, is I have Ehlers-Danlos Syndrome Hypermobility Type. The good thing about this type is is not going to alter my life span, like some of the other types do. A really good link to understand more about Ehlers-Danlos Syndrome Hypermobility Type is EDNF.org. it's really important to understand that each type of EDS has different genetic makeup and, with a diagnosis of one, I don't have to worry about it progressing to a different type. It can get worse, the pain, dislocations, and subluxations can get worse and more frequent though. It's not the best diagnosis to have. There are alot of struggles and pain ahead of me, but with my family, friends, and most importantly, God with me, there is nothing I can't get through. I love you all! Please email me at carley.cook1@gmail.com or contact me through whatever avenue you can if you have questions or comments. Keep in mind though, I'm learning too!
I love you guys!
Gentle hugs!


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Tomorrow is Sooooo Close!

Hey everyone! I am so excited for tomorrow!  I have my first appointment with my genetic doctor tomorrow morning!! They will hopefully be able to diagnose me.  With EDS, there isn't a lack of collagen, it just doesn't produce properly and so it isn't as strong as normal.  I'm excited to have this appointment and hopefully get the EDS diagnosis.  I already have the hypermobility syndrome diagnosis.  I'm also excited for my first appointment with my rheumatologist next Monday afternoon.  Hoping for alot of answers coming soon!!
♥ Gentle hugs

Such a Pain!

Pain can go away and never come back, and I would be perfectly fine with that.  Pain is super annoying.  I think everyone understands some level of pain.  Pain comes in all kinds and all levels.  I know i have felt minor pain and massive pain, neither of which are fun or cool.  Unfortunately, with Hypermobility Syndrome and very likely EDS 3, pain is more common than not.  It is a constant struggle that typically never goes away.  Even when it feels like there isn't pain, it's usually it's because that noticeable pain isn't present, but the small nagging pain still is.
I think the hardest part of Hypermobility Syndrome and EDS-3 is that it is a hidden and invisible disorder.  I may look healthy and happy but really I may be feeling a massive amount of pain and be struggling to even walk without hurting.  For most of my life, I have kept my pain kind of hidden from most people.  I didn't want to be the annoying one that always complained about being in pain or struggling.  I would act like everything was great and try to suppress the pain and frustration.  Now that I feel like I have validation and understand that there is a reason for how I feel, I feel much more comfortable talking about it.  Even with feeling more comfortable talking about it, I still try not to only talk about pain.  Basically, if you see me and I look healthy and like I'm feeling really great, I'm probably not.  My knee may have just given out for the thousandth time, or my hips might be rotated out again and so my left leg is shorter than my right.  What you see on the outside could very easily be a perfectly crafted mask to make you think I'm doing great.

Being a Zebra

Zebras are Unique

In the medical world, horses are the common sicknesses.  Doctors see all the symptoms and usually diagnose the patient with something more common.  Zebras, while they sound similar to horses, are much more rare.  Doctors will hear the hoof steps and think it is a horse, when in reality, it could be a zebra.  EDS is a rare disorder that can be misdiagnosed as more common disorders and diseases.  I'm rare. :)

Being Amazing

Even though I'm almost always in a lot of pain globally, I always try really hard to "be amazing".  I try really hard to be positive and happy, even though I have every right to be negative.  What is the point of being negative and bringing down everyone around you when you can make people smile.
For as long as I can remember, I have had massive amounts of pain, mainly in my joints.  I have always had incredibly soft skin, joints that dislocate, joints that like to give out, and dry eyes to the extent that I couldn't wear makeup longer that a few hours without it really bothering me. Since I was really young, I have been able to do weird things with my joints, especially my fingers and arms/shoulders.  I also crack/pop all over.  I can crack my fingers, wrists, elbows, shoulders, neck, entire back, hips, knees, ankles, and toes.  I have to admit, the pain sucks, but it is what it is and I don't like to be a negative nelly.
Just trying to stay happy and positive.

Sending gentle hugs!

Strength Within

Of course, everyone has their strengths, weaknesses, and struggles.  It's not surprising when we find out that we aren't the only ones in the world with problems and challenges.  What still surprises me, though, is how good people are with hiding the struggles and challenges they face daily and frequently.  Through these struggles and challenges, we don't become stronger, but we learn how much strength is within us.  We all have the strength within us to overcome everything that comes our way; however, the question is whether or not you will find and properly label that strength used to overcome challenges.
I have been given many chances to find and understand the strength within me.  I was able to find this strength through battling depression, anxiety, separation anxiety, Post Traumatic Stress Disorder, being bullied, and surviving being sexually assaulted.  After all the challenges I have already fought through, now I have another challenge.  This challenge, "the collagen problem", will likely be with me for the rest of my life.  The technical term for this new challenge is Ehlers-Danlos Syndrome Type 3- Hypermobility Type or EDS-3.  I officially am diagnosed with Hypermobility Syndrome and will likely be diagnosed with EDS 3 soon, by the Medical Genetic Doctor at University of Michigan.  With this challenge, I am faced with horrible pain globally throughout my body.  EDS-3 is an inherited connective tissue disorder that affects the collagen in the body.  It can be quite common to have joint dislocations with EDS-3, which cause an immense amount of pain.  I can also manipulate my joints in ways that isn't normal, just as my knees and elbows can straighten past the normal degrees, and I can bend joints past the regular points.  Even though it is something that is possible, I try to avoid doing crazy things with my joints if I can, because it tends to cause excess pain sometimes.
Basically, this blog is to document my journey with learning about Hypermobility Syndrome and Ehlers-Danlos Syndrome Type 3, share my story and what I learn with everyone, and to inform those who have never heard of or fully understood this disorder.
Sending gentle hugs to you all!
Carley