So this week, on the Apple watch workout app, there was a challenge to get in your 30 minutes of exercise each day from Feb 8-14, it was a Valentine's week challenge. So it's definitely been something I wouldn't normally push myself to do and i'm definitely finding that my limits are.. I definitely have more limits than i used to.
This wouldn't have been an issue for me a few years ago, before EDS really started to hit me hard. But i'm finding this week that pushing myself to do the 30 minutes of exercise every day has been
1. making me a lot more tired.
I've had to nap every day.. sometimes It was a 1 hour nap, sometimes.. like yesterday, I laid down for like 3-4 hours, in and out of sleep, and i still didn't feel rested at the end, but at least it gave me enough to get through to bed time.
2. basically it's drained my energy.
3. This week i've been craving more fatty foods, probably because i'm burning calories, i'm burning fat, and my body is like "What's going on?" so i've been craving more fatty foods. That has also been slowing down my digestion, so even though i'm still eating veggies and still taking my miralax, i have not been pooping as much, and i can feel it in my lower back. i feel like i have stool that just is sitting there, seems like i'm becoming constipated again because my body doesn't know what to do with all this movement.
4. the instability in my knees has been terrible, my hips have been really bad (painful), i've had a lot more pain my toes, also flaring up my Morton's Neuroma quite a bit.
5. i've felt more nauseous basically every day.
6. also my period was a week late, and it's very light. that could have to do with the fact that my daughter was also on hers this last week, but at the same time, my body has done so much more these last 7 days than i'm used to. it definitely threw it off.
7. because i was so tired and in pain, that actually cost me 1 of my PT sessions and it also cost me my.. um.. (why can't i think of it, what's it called?) .. speech therapy sessions. I called it off on Monday I think maybe partially because of weather, but i also wasn't feeling good. We rescheduled it to Wednesday at 11:30, which I accidentally put it in my calendar for 1:30. So that was a mishap because I wasn't thinking straight and I was too tired. So that sucks.
learning when and when not to challenge myself, or a healthy amount of challenge. knowing what kind of challenge i can do, i am not going to do exercise challenges after this, unless it's something i know i can achieve, or that might be slightly off of what i'm used to, just seeing what my body can actually do.. this was kind of a red flag in the beginning but i was like, you know i'm gonna see if i can do it. and then it became this "i'm gonna do it, i'm gonna do it". and then i got encouragement from other people "you can do it, you can do it". and i need to be more mindful of my limits.
so challenges like "how many veggies can you eat in a week" or "how much water can you drink in a week" or "how clean can you get the house in a week". stuff like that. all the while being mindful of how my body and my mind are receiving this information, because this is a new chapter in my life, and i need to be mindful of how i am physically and mentally doing. because that's where i am. i need to mentally and physically take better care of myself.. and know my limits.
Thursday, February 14, 2019
Wednesday, February 13, 2019
today
i have no motivation
i have no direction
i had to scrape thick ice off my van this morning 40 minutes before my dentist appointment just so i could drive 5 minutes down the road..
so blustery and snowy, my ears are burning from the cold (gotta get my muffs)
it was so exerting for me.. huff and puff.. short of breath.
stop for a minute.. my equilibrium was unhappy.
palpitations
start to feel light headed.. just scraping off the car.
go inside and sit down, check my heart rate and EKG.. i'm ok.
stand back up and feel a syncope episode coming on.. sit back down.
give it a few minutes, slow my breathing
drink my fiber water.
my shoulders and upper back are fatigued from scraping so hard.
trying to sweep off the top of the van, a few loose pieces, most of it is stuck
(tomorrow i get PT, tomorrow i get PT..)
...
i'm back from the dentist.
i noticed when i was watching the tv show that my eyes weren't adjusting and focusing.. it's been more and more obvious when i look at things that i need another eye check. sigh
(just called and made an eye appointment.. in May)
didn't want to wear my knee braces there, but thought it would be best. when people are like "aww, you're wearing your braces today". please don't pity me. it's hard for me to show my struggles. I know people don't mean it to be belittling, but it doesn't feel good to be the recipient of that. it feels like "you poor thing".
it's not easy for me to have to wear them.
not my accessory of choice.
some days i'm strong enough to "own it" and say "who cares".
some days i wish i didn't have to "own it"..
it's a hard road to accept myself with my new struggles.. it will only get harder.
...
pushing myself through doing dishes, vacuuming.. have the dishes soaking while i vacuum the main level.
I may nap before I have lunch and finish them.
my head is hurting from the brightness of the snow.
my ears are ringing..
after lunch i have speech therapy..
oh yeah, i'm supposed to write down things that triggered my cognitive malfunctions over the last few days.. guess i know what i'll be doing during lunch.
...
tonight, i believe Jazmine is going to her friends house so she has a ride to Awahna.
I have to get Zoe to the high school for her dress rehearsal tonight.. she's been looking forward to being in the school talent show for a couple years now. She's doing a solo dance.. i'm so proud of her. <3
Alivia gets to have daddy to herself tonight for a bit :)
...
feeling nauseous.. for the second time today.. maybe i should take my nausea meds and lay down.
after i pay our health insurance bill online
will make more coffee later
i have no direction
i had to scrape thick ice off my van this morning 40 minutes before my dentist appointment just so i could drive 5 minutes down the road..
so blustery and snowy, my ears are burning from the cold (gotta get my muffs)
it was so exerting for me.. huff and puff.. short of breath.
stop for a minute.. my equilibrium was unhappy.
palpitations
start to feel light headed.. just scraping off the car.
go inside and sit down, check my heart rate and EKG.. i'm ok.
stand back up and feel a syncope episode coming on.. sit back down.
give it a few minutes, slow my breathing
drink my fiber water.
my shoulders and upper back are fatigued from scraping so hard.
trying to sweep off the top of the van, a few loose pieces, most of it is stuck
(tomorrow i get PT, tomorrow i get PT..)
...
i'm back from the dentist.
i noticed when i was watching the tv show that my eyes weren't adjusting and focusing.. it's been more and more obvious when i look at things that i need another eye check. sigh
(just called and made an eye appointment.. in May)
didn't want to wear my knee braces there, but thought it would be best. when people are like "aww, you're wearing your braces today". please don't pity me. it's hard for me to show my struggles. I know people don't mean it to be belittling, but it doesn't feel good to be the recipient of that. it feels like "you poor thing".
it's not easy for me to have to wear them.
not my accessory of choice.
some days i'm strong enough to "own it" and say "who cares".
some days i wish i didn't have to "own it"..
it's a hard road to accept myself with my new struggles.. it will only get harder.
...
pushing myself through doing dishes, vacuuming.. have the dishes soaking while i vacuum the main level.
I may nap before I have lunch and finish them.
my head is hurting from the brightness of the snow.
my ears are ringing..
after lunch i have speech therapy..
oh yeah, i'm supposed to write down things that triggered my cognitive malfunctions over the last few days.. guess i know what i'll be doing during lunch.
...
tonight, i believe Jazmine is going to her friends house so she has a ride to Awahna.
I have to get Zoe to the high school for her dress rehearsal tonight.. she's been looking forward to being in the school talent show for a couple years now. She's doing a solo dance.. i'm so proud of her. <3
Alivia gets to have daddy to herself tonight for a bit :)
...
feeling nauseous.. for the second time today.. maybe i should take my nausea meds and lay down.
after i pay our health insurance bill online
will make more coffee later
Friday, February 8, 2019
the focus of your faith- cornerstone church
The church is here to preach, not just to be nice, helpful people.
We are to be a light, to lead, to tell everyone we come in contact with about the truth we know.
We weren't meant to walk on eggshells.
We were mean to conquer a path of coals. Stomp out the fire.
We have to work on having more faith.. optimism is not faith, faith is a spirit. Do we listen to the Spirit?
People move in the direction of their dominant friends.
Who do you surround yourselves with?
Are these individuals you can trust? Individuals you can share your voice with? Individuals who will pick you up and guide you in the way of truth when you fall?
Problems= challenges that give you the environment for your faith to show up.
Problems are not a bad thing.
Problems are a chance to grow and change.
When you squeeze something, whatever is in it will come out.
What is in you?
When you are squeezed, what comes out?
Distraction is the result of a broken focus.
Where is your focus?
There are so many things that distract us, that can pull us this way and that way.
If you need to refocus, make it a priority.
Your FOCUS will lead you in the DIRECTION of your FAITH.
footballsunday.com 2019 super bowl- church
Proverbs 3:5-6
Trust in the Lord with all your heart and lean not on your own understanding; In all your ways acknowledge Him, and He shall direct your steps.
1 Samuel 16:7 But the Lord said to Samuel. "Do not consider his appearance or his height, for I have rejected him The Lord does not look at the things people look at. People look at the outward appearance, but the Lord looks at the heart."
God doesn't choose who we think He will choose.
For God's work, our appearance does not matter, our success does not matter. He calls people who are the lowliest to do His work. How's your heart?
Matthew 28:19
Go therefore and make disciples of all nations, baptizing them in the name of the Father, Son and the Holy Spirit.
Make every minute count, as you are going.
As you are going. AS YOU ARE GOING...
This refers to movement.. you can't sit and wait for things to happen. Be mindful and be intentional during your journey. Keep moving.
He'll give you what you ask for.. in His time.
It's not about when we want it, our earthly need for instant gratification. His timing is perfect. Things will always happen when are supposed to happen.. not when we want them to happen.
Trust in the Lord with all your heart and lean not on your own understanding; In all your ways acknowledge Him, and He shall direct your steps.
1 Samuel 16:7 But the Lord said to Samuel. "Do not consider his appearance or his height, for I have rejected him The Lord does not look at the things people look at. People look at the outward appearance, but the Lord looks at the heart."
God doesn't choose who we think He will choose.
For God's work, our appearance does not matter, our success does not matter. He calls people who are the lowliest to do His work. How's your heart?
Matthew 28:19
Go therefore and make disciples of all nations, baptizing them in the name of the Father, Son and the Holy Spirit.
Make every minute count, as you are going.
As you are going. AS YOU ARE GOING...
This refers to movement.. you can't sit and wait for things to happen. Be mindful and be intentional during your journey. Keep moving.
He'll give you what you ask for.. in His time.
It's not about when we want it, our earthly need for instant gratification. His timing is perfect. Things will always happen when are supposed to happen.. not when we want them to happen.
Wednesday, February 6, 2019
off loading my trauma. it's not here anymore. it's gone.
i'm not holding onto it anymore.
realizing that what's done is done, and i've learned from it, and i've learned about it.
and i've spent tears and time putting together things that i had forgotten.
time to let it go..
my healing has been difficult and raw.
a huge thank you to my BFF for walking and talking me through this..
and praise to God for giving me the strength.. leaning on Him and learning what's done is done, and i've learned more about forgiveness and grace.
.......
It happened in high school
realizing that what's done is done, and i've learned from it, and i've learned about it.
and i've spent tears and time putting together things that i had forgotten.
time to let it go..
my healing has been difficult and raw.
a huge thank you to my BFF for walking and talking me through this..
and praise to God for giving me the strength.. leaning on Him and learning what's done is done, and i've learned more about forgiveness and grace.
.......
It happened in high school
I remember only a little
I remember it didn’t happen very often
I remember it was only ever in my bedroom at night, and it was random. It wasn’t all the time.
I remember who he was
I remember he was smart and kind and gentle and handsome
I remember that he asked if i wanted a chest rub, i was naive and told him yes, but it felt awkward so i told him to stop.. and he did.
Probably a combination of naivete and curiosity.
It was mostly just kissing.
I don’t remember him ever laying down beside me
Only that he sat on my bed
And he never touched me anywhere else
I know I was tense
Uncomfortable
It was my first physical experience with sexuality.
He was 2.5 years older than me.
I don’t remember him ever asking if it was ok
He just kissed me
It was gentle, it felt right, but it felt wrong
I was only 15 when it started, and I was only 16 when it ended
It was strange
And i wasn’t quite sure what was happening
Or why
Maybe he was taking out his sexual desires on me?
Maybe he felt like I was his dummy to practice on.
He knew me more than that, though.
He saw me every day
We would eat together, pray together
I feel like he took out his sexual teenage boy frustrations on me possibly because if he had acted that way towards another girl it would’ve been unacceptable. And he knew I would never say anything. I was a good little girl. I didn’t break rules.
….
This is probably what led to my sexual experiences in college.
Exploring to see what felt ok and what was acceptable.
I had an intimate night with a girl friend.
I had a dry hump experience with a guy i trusted. (to this day remembering his name makes me uncomfortable) Even that one I knew where I was going, I knew what it might lead to, and i knew what was happening during the act, but it felt like it wasn’t me. My body and my mind were numb.
I had an online sexual relationship during that one year of college as well.
I feel like this also led to the reason I let Brian touch me before we were married, and why i was ok having sex with him before the wedding. Even though I knew it wasn’t right, I loved him. It made me uncomfortable, but it’s what he wanted.
….
I feel like over the years
Since i’ve already talked it over with myself many times
And i’ve been to counseling and learned how to forgive people for things they’ve done that they didn’t know effected me..
I feel like i’ve already begun to have closure on what happened to me.
That I’ve already entered the process of forgiveness.
I feel like I've already started moving on with my life and leaving this in the past.
Yes it happened to me, no it wasn't OK… I'm not angry with him. But I'm not gonna let it ruin my future either.
I may or may not ever say anything out loud about it.
But it does feel good knowing that I can piece together what happened to me and let it be a lesson to not let anyone take advantage.
I’m learning to create new intimate experiences with my husband.
And letting myself be ok with saying no. Finding my voice.
Learning to feel comfortable in my own mind and in my own body. Both have been through a lot.
I'm not letting anybody else control my body or my mind anymore. I have my own voice.
Monday, February 4, 2019
my medical story.. the road to finding out i'm a Zebra.. and beyond. WARNING- LONG!
Around the time i turned 30, I started seeing Dr's for problems that were popping up more and more. Some of these things I remembered happening when I was younger as well. I would have moments of memories when things that had happened when I was a child suddenly made sense.. when I heard about a genetic problem called Ehlers Danlos. This syndrome happens when you're born.. you hear me? You're born with it. Hence being genetic. Hence.. the whole reason I can remember times through my childhood where things happened that I didn't know were abnormal.. until now.
Hi, I'm Cami.
And I was born with Ehlers Danlos Syndrome, hyper mobility type (hEDS).
When my body was created in the womb, one of the parts of my makeup was created faulty.. it's called collagen. It's like the glue in your body that keeps everything together. It's our connective tissue. And mine wasn't built right.
This created my anxiety and depression (I have regular anxiety, that i see a psychologist for and take medication, and also a different kind of anxiety because my body creates extra adrenaline- this can't really be helped by medication or counseling because it's not mental).
This created my cognitive function problems in school and work.. that i didn't know were cognitive function problems until recently. Now they make sense. (not being able to keep up at jobs, not knowing that i'm messing up data entry, not knowing why I could study a lot but not get good grades.) It's almost impossible for me to change from one thing to another without having at least a little break down (yes, including tears and anxiety). My brain can't multitask like it should be able to. My neuropathways don't talk to each other like they should.
This creates communication problems.. this makes relationships even harder. If i'm thinking something and/or having a conversation with someone, I can't always say what I want to. I'll have it all planned out in my mind, but when it comes to speaking it.. there's a disconnect. And then I start getting frustrated, and it makes it worse. It's so hard for me to actually say what I want to or need to. This is one reason I prefer to type.. because physically talking to someone takes so much out of me, it's so hard to do. Finding out what brain fog is.. days where I can't think at all.. not knowing what i'm supposed to be doing, just walking around the house in circles shrugging my shoulders.
This created problems with my proprioception.. I would misjudge the same branch on the same tree constantly and always fall from the same spot right onto my back. But I kept climbing. (I'm not aware of where my body actually is when I think it's somewhere else. IE i think my foot is far enough away from the door to not get hit, when in reality.. boom, ouch. probably gonna leave a gash in my skin). I would fall off my bike, fall when rollerblading, knock into doorways, bookshelves, fall down stairs, trip over my own feet.
This is why I have sensitive skin. I have super baby soft skin. It's a lovely thing! Until you don't know how dry you are so when you finally lotion, it burns soooo bad. And parts of my face get dried out so bad i get scab areas that look like bad breakouts (mostly on my nose and ears). And if i bump into something too hard, i get scrapes and bruises easily.
Because this also effects how resilient my inner organs are. Bruises. I get them everywhere. Most of the time they are small. Sometimes I don't even know how they occur. (problems with digestion, heart palpitations and abnormal sinus heart rhythm). Have dysphagia (hard to swallow and sometimes food gets stuck in my chest, even soup), GERD and acid reflux, recently had a GI scope and found uncers in my stomach, went back later the ulcers were gone but now i have polyps and a hiatal hernia.. joy. Have problems with multiple foods.. finding out what i'm sensitive too and how I can adjust my diet to make me body feel better and what triggers what. If I want to feel my best, I eat no acidic foods, no sugar, no dairy, no fatty meats, nothing with gluten in it, no alcohol and no hard beans. Acidic foods make my bladder burn (painful bladder syndrome AKA interstitial cystitis).. so i even have to only drink dark coffee if i want to drink coffee, and only have dark chocolate if i want something sweet. My pregnancies.. the first one (we didn't know I had POTS) i was put on a low sodium diet and bedrest and only made it 4 weeks because my kidneys were starting to fail. My husband would have lost his wife and his baby if the Dr's hadn't caught it on my stress test that day. The other two babies never stayed in past 38 weeks, the second one came out natural with one push after only being in labor for 4.5 hours. (unfortunately for her it was too fast and she had to be in the ICU for 30 hours because I could hold her, too much fluid in her lungs.)
This is why I get dizzy when I stand up.. it causes a problem with my autonomic system (the part of your body that communicates using the nervous system to tell my blood flow to follow me when i stand up.. it doesn't get there on time, so i just get dizzy.. and i've passed out from this.. 4-5 times times. Once was in high school, once was in college.. once was when i tried to give blood for the first time.. once was when i got shots for a migraine* too close to the vagus nerve). This is called dysautonomia. The kind of dysautonomia I have is called POTS and vasovagal syncope and neurocardiogenic syncope. Because my blood flow doesn't keep up with my body, I have problems regulating my body's temperature. I'm a hoodie and sock girl all the way.. my fingers and my toes are almost always cold, i'm used to that. I can't go in a hot tub for any length of time. I'm super sensitive to heat on my skin.. i hate the summer.
This is why I have to wear braces on my body. My joints are extra flexible, called hyper mobile. My elbows, my knees, my fingers all bend backwards, I have swan neck deformity in my hands, my thumb joints basically stay dislocated because they're so worn out.. lots of joint pain because of the extra flexibility. Basically feels like osteoarthritis, but without the actual breakdown of cartilage. My knees have condromalacia patella (crunching under my knee caps, which is slowly wearing out the cartilage). I subluxate (partially dislocate) my fingers, hips, shoulders.. i sprain my wrists, ankles.. I have back pain almost constantly. My sacroiliac joint is unstable.. i wear a special belt every day to help it from coming out of place. My neck is straight and partially reversed, causing headaches because it's unstable. My fingers locking up when I would play flute or piano. I have bunions because my toes are super bendy, my big toe doesn't like to stay straight.. so when I remember, i wear bunion correctors. And I have morton's neuroma.. a pinched nerve in my right foot, so i only wear a couple brands of shoes as well.
This is why I have nerve pain.. because they get pinched and pulled all the time. Numbness in my fingers, radiating nerve pain through my skull (had a CT, nothing shows signs of stroke), sometimes not able to pick up a glass of water, unable to enjoy physical intimacy sometimes because of the neurological after effect, or because of something that's causing me pain right then.. shooting pain or something that isn't sitting right in a joint making a nerve get jacked up. And the lovely life of migraines, constipation, muscle spasms and restless leg syndrome. I've never slept very well, even as a child.. gotta love insomnia. But I read a lot of books. ;)
This is why my hormones are off. I have to take a spray under my tongue to help even them out so i can feel normal feelings. I actually have some libido now, I had barely any for years (took different supplements, tried counseling).. bloodwork is an awesome thing. I am able to find moments that I can be more spontaneously fun, and a lot of my pimples have subsided *YES!
This is why I can't go out in the yard and play soccer or chase after my kids without paying for it. We generally take a day trip to go somewhere that we have a membership to every couple months. This requires me to rest the day before, bring my cane and my wheelchair because by the end I can barely walk without pain, joints wanting to fall apart, can't use the cane because it requires the strength from my shoulders and hands and they wear out, my energy is completely gone. I have to alternate. I have to adjust to a new way of life. I do as much as I can on a good day, but I have to remember if i don't listen to my body and overdo it, i'll be paying for it for days afterwards.
And I have to adjust to not being able to work outside my home because I never know what the next day, the next hour, the next minute will bring. I was literally sitting at my husbands office playing on my phone until he could take a break, and my shoulder decided to take a ride out of the socket.. slid just a little bit out, nerve pain shooting down my arm. Going from a chronic illness level 3 (my everyday level) up to a 9 in a split second, because my body can't hold itself together. Had to put my arm in a sling for the next two days because it hurt so bad, even after moving it back in place.
I found a great PCP, after 8 months of searching for the right kind of Dr. He is a Dr of osteopathy, so he can adjust me when I need it, refer to me specialists (which now i have a great team that we've been building.. i have a rheumatologist, cardiologist, neurologist, gastroenterologist, urologist, otolaryngologist), able to refer to me to physical therapy (i've been referral twice now.. have thoracic outlet syndrome, pelvic floor dysfunction, scapular dyskinesis, functional scoliosis, cervicalgia, SI dysfunction, flat feet [got custom orthotics to help my feet and ankles because there's no support]).
....
I will say in all of this God is good.
He's placed amazing people around me to guide me through this journey. My husband, my BFF, just the right Dr's, a couple family members, support groups that i was led to.. His faithfulness is so reassuring. Giving me strength when I have nothing left to give of myself, learning to give myself grace, and learning to ask for help when I know I need it.. i'm not good at that. I've always been a DIY person.. it's hard for me to accept this sometimes.
But accept it or not, this is the new me. I'm learning to be ok with her and learning to even like her at times. There is always a silver lining.. sometimes you just have to work harder to find it.
Like being able to jump hurdles and do cheerleading really easy because I was flexible, having a broad range with my voice when I sing.
I didn't start having more problems until after I had kids. That started me on a slow decent. I had lots of pain working retail (on my feet a lot), only worked the front desk at a lawyers office for 4 months, was a circuit coach at Curves for 8 months (couldn't mentally get it, and injured my sciatic nerve working out), had a huge problem with my anxiety working at a fast paced dentist office, and then finally got to work at the place I've wanted to be since I was a kid.. The Christian Family Centre. From then I realized it would be my last job.. I couldn't do it anymore. I volunteered there for 18 months, worked on staff for 1.5 years, then I injured myself in an exercise class about a year ago and it's been more rapidly down hill since then.
I feel blessed to have done as much as I have. I've been able to travel the world doing mission work 4 times, was in cheerleading for 6 years, track for 4 (they made me stop because I was ruining my knees), was part of church worship from when I was a kid up until 2017.
I have been able to bring this to my sisters attention as well, since she deals with a lot of EDS symptoms. We've been talking over the last year. She's not pursuing a diagnosis, but that's ok.
My older brother has migraines, allergies (i do too), asthma (i do too) and hyper mobility. My younger brother, as far as I know, doesn't have any of this... praise God!
And i'm glad I know now why my body does what it does, because with this being genetic, I have to be careful with my daughters. My oldest daughter also has it. She is 13 and still wears pull-ups because her bladder is stretchy and hasn't matured the way it should, she is VERY hyper mobile, just like I was at her age (used to put my feet behind my head), has ADHD, gets tired very easily, sprains her ankles very easily (needs insoles because her ankles roll in). I'm glad I know what to do to help her. Has some anxiety and social depression. She has gone through physical therapy to strengthen her joints, has a rheumatologist and a urologist (her bladder and kidneys look normal, so maybe some pelvic floor dysfunction). She also has POTS (thankfully she was able to get a blood work up and an EKG this last year).
My youngest daughter has constipation issues, so she's on miralax, and also has ADHD and anxiety.
My middle child sprains herself easily and has a major adjustment disorder and anxiety, some OCD.
So grateful for a husband who is there through it all, willing to learn and willing to help.
.......
Interestingly this is just the beginning of my journey as a Zebra. I was finally diagnosed 6-26-2018, after lots of ruling out of other things.
I don't have any immune disorders, i don't have any arthritis, no lupus, no gout.. my rheumatologist thinks there might be something else going on. (i'm being tested for Aspergers Syndrome in March)
I do have vitamin D deficiency, so i take 5000IU of Vit D 3 every day to help my energy (nice to not feel so sluggish).
And because of my dads side family history of heart problems (probably where the EDS comes from) I take fish oil and check my heart rate and EKG on my watch as often as I think of it.
At this point, i'm getting used to being an advocate for myself (being braver than I used to be and this does cause some anxiety, but i'm doing it), and starting to advocate for my children as well. I actually switched them from their pediatrician (we've been with the same one since birth) to a new one, because I don't feel like he was really listening to our concerns. The older they were getting, the less he was helpful. So i'm glad we have fresh eyes on my children. :)
Hi, I'm Cami.
And I was born with Ehlers Danlos Syndrome, hyper mobility type (hEDS).
When my body was created in the womb, one of the parts of my makeup was created faulty.. it's called collagen. It's like the glue in your body that keeps everything together. It's our connective tissue. And mine wasn't built right.
This created my anxiety and depression (I have regular anxiety, that i see a psychologist for and take medication, and also a different kind of anxiety because my body creates extra adrenaline- this can't really be helped by medication or counseling because it's not mental).
This created my cognitive function problems in school and work.. that i didn't know were cognitive function problems until recently. Now they make sense. (not being able to keep up at jobs, not knowing that i'm messing up data entry, not knowing why I could study a lot but not get good grades.) It's almost impossible for me to change from one thing to another without having at least a little break down (yes, including tears and anxiety). My brain can't multitask like it should be able to. My neuropathways don't talk to each other like they should.
This creates communication problems.. this makes relationships even harder. If i'm thinking something and/or having a conversation with someone, I can't always say what I want to. I'll have it all planned out in my mind, but when it comes to speaking it.. there's a disconnect. And then I start getting frustrated, and it makes it worse. It's so hard for me to actually say what I want to or need to. This is one reason I prefer to type.. because physically talking to someone takes so much out of me, it's so hard to do. Finding out what brain fog is.. days where I can't think at all.. not knowing what i'm supposed to be doing, just walking around the house in circles shrugging my shoulders.
This created problems with my proprioception.. I would misjudge the same branch on the same tree constantly and always fall from the same spot right onto my back. But I kept climbing. (I'm not aware of where my body actually is when I think it's somewhere else. IE i think my foot is far enough away from the door to not get hit, when in reality.. boom, ouch. probably gonna leave a gash in my skin). I would fall off my bike, fall when rollerblading, knock into doorways, bookshelves, fall down stairs, trip over my own feet.
This is why I have sensitive skin. I have super baby soft skin. It's a lovely thing! Until you don't know how dry you are so when you finally lotion, it burns soooo bad. And parts of my face get dried out so bad i get scab areas that look like bad breakouts (mostly on my nose and ears). And if i bump into something too hard, i get scrapes and bruises easily.
Because this also effects how resilient my inner organs are. Bruises. I get them everywhere. Most of the time they are small. Sometimes I don't even know how they occur. (problems with digestion, heart palpitations and abnormal sinus heart rhythm). Have dysphagia (hard to swallow and sometimes food gets stuck in my chest, even soup), GERD and acid reflux, recently had a GI scope and found uncers in my stomach, went back later the ulcers were gone but now i have polyps and a hiatal hernia.. joy. Have problems with multiple foods.. finding out what i'm sensitive too and how I can adjust my diet to make me body feel better and what triggers what. If I want to feel my best, I eat no acidic foods, no sugar, no dairy, no fatty meats, nothing with gluten in it, no alcohol and no hard beans. Acidic foods make my bladder burn (painful bladder syndrome AKA interstitial cystitis).. so i even have to only drink dark coffee if i want to drink coffee, and only have dark chocolate if i want something sweet. My pregnancies.. the first one (we didn't know I had POTS) i was put on a low sodium diet and bedrest and only made it 4 weeks because my kidneys were starting to fail. My husband would have lost his wife and his baby if the Dr's hadn't caught it on my stress test that day. The other two babies never stayed in past 38 weeks, the second one came out natural with one push after only being in labor for 4.5 hours. (unfortunately for her it was too fast and she had to be in the ICU for 30 hours because I could hold her, too much fluid in her lungs.)
This is why I get dizzy when I stand up.. it causes a problem with my autonomic system (the part of your body that communicates using the nervous system to tell my blood flow to follow me when i stand up.. it doesn't get there on time, so i just get dizzy.. and i've passed out from this.. 4-5 times times. Once was in high school, once was in college.. once was when i tried to give blood for the first time.. once was when i got shots for a migraine* too close to the vagus nerve). This is called dysautonomia. The kind of dysautonomia I have is called POTS and vasovagal syncope and neurocardiogenic syncope. Because my blood flow doesn't keep up with my body, I have problems regulating my body's temperature. I'm a hoodie and sock girl all the way.. my fingers and my toes are almost always cold, i'm used to that. I can't go in a hot tub for any length of time. I'm super sensitive to heat on my skin.. i hate the summer.
This is why I have to wear braces on my body. My joints are extra flexible, called hyper mobile. My elbows, my knees, my fingers all bend backwards, I have swan neck deformity in my hands, my thumb joints basically stay dislocated because they're so worn out.. lots of joint pain because of the extra flexibility. Basically feels like osteoarthritis, but without the actual breakdown of cartilage. My knees have condromalacia patella (crunching under my knee caps, which is slowly wearing out the cartilage). I subluxate (partially dislocate) my fingers, hips, shoulders.. i sprain my wrists, ankles.. I have back pain almost constantly. My sacroiliac joint is unstable.. i wear a special belt every day to help it from coming out of place. My neck is straight and partially reversed, causing headaches because it's unstable. My fingers locking up when I would play flute or piano. I have bunions because my toes are super bendy, my big toe doesn't like to stay straight.. so when I remember, i wear bunion correctors. And I have morton's neuroma.. a pinched nerve in my right foot, so i only wear a couple brands of shoes as well.
This is why I have nerve pain.. because they get pinched and pulled all the time. Numbness in my fingers, radiating nerve pain through my skull (had a CT, nothing shows signs of stroke), sometimes not able to pick up a glass of water, unable to enjoy physical intimacy sometimes because of the neurological after effect, or because of something that's causing me pain right then.. shooting pain or something that isn't sitting right in a joint making a nerve get jacked up. And the lovely life of migraines, constipation, muscle spasms and restless leg syndrome. I've never slept very well, even as a child.. gotta love insomnia. But I read a lot of books. ;)
This is why my hormones are off. I have to take a spray under my tongue to help even them out so i can feel normal feelings. I actually have some libido now, I had barely any for years (took different supplements, tried counseling).. bloodwork is an awesome thing. I am able to find moments that I can be more spontaneously fun, and a lot of my pimples have subsided *YES!
This is why I can't go out in the yard and play soccer or chase after my kids without paying for it. We generally take a day trip to go somewhere that we have a membership to every couple months. This requires me to rest the day before, bring my cane and my wheelchair because by the end I can barely walk without pain, joints wanting to fall apart, can't use the cane because it requires the strength from my shoulders and hands and they wear out, my energy is completely gone. I have to alternate. I have to adjust to a new way of life. I do as much as I can on a good day, but I have to remember if i don't listen to my body and overdo it, i'll be paying for it for days afterwards.
And I have to adjust to not being able to work outside my home because I never know what the next day, the next hour, the next minute will bring. I was literally sitting at my husbands office playing on my phone until he could take a break, and my shoulder decided to take a ride out of the socket.. slid just a little bit out, nerve pain shooting down my arm. Going from a chronic illness level 3 (my everyday level) up to a 9 in a split second, because my body can't hold itself together. Had to put my arm in a sling for the next two days because it hurt so bad, even after moving it back in place.
I found a great PCP, after 8 months of searching for the right kind of Dr. He is a Dr of osteopathy, so he can adjust me when I need it, refer to me specialists (which now i have a great team that we've been building.. i have a rheumatologist, cardiologist, neurologist, gastroenterologist, urologist, otolaryngologist), able to refer to me to physical therapy (i've been referral twice now.. have thoracic outlet syndrome, pelvic floor dysfunction, scapular dyskinesis, functional scoliosis, cervicalgia, SI dysfunction, flat feet [got custom orthotics to help my feet and ankles because there's no support]).
....
I will say in all of this God is good.
He's placed amazing people around me to guide me through this journey. My husband, my BFF, just the right Dr's, a couple family members, support groups that i was led to.. His faithfulness is so reassuring. Giving me strength when I have nothing left to give of myself, learning to give myself grace, and learning to ask for help when I know I need it.. i'm not good at that. I've always been a DIY person.. it's hard for me to accept this sometimes.
But accept it or not, this is the new me. I'm learning to be ok with her and learning to even like her at times. There is always a silver lining.. sometimes you just have to work harder to find it.
Like being able to jump hurdles and do cheerleading really easy because I was flexible, having a broad range with my voice when I sing.
I didn't start having more problems until after I had kids. That started me on a slow decent. I had lots of pain working retail (on my feet a lot), only worked the front desk at a lawyers office for 4 months, was a circuit coach at Curves for 8 months (couldn't mentally get it, and injured my sciatic nerve working out), had a huge problem with my anxiety working at a fast paced dentist office, and then finally got to work at the place I've wanted to be since I was a kid.. The Christian Family Centre. From then I realized it would be my last job.. I couldn't do it anymore. I volunteered there for 18 months, worked on staff for 1.5 years, then I injured myself in an exercise class about a year ago and it's been more rapidly down hill since then.
I feel blessed to have done as much as I have. I've been able to travel the world doing mission work 4 times, was in cheerleading for 6 years, track for 4 (they made me stop because I was ruining my knees), was part of church worship from when I was a kid up until 2017.
I have been able to bring this to my sisters attention as well, since she deals with a lot of EDS symptoms. We've been talking over the last year. She's not pursuing a diagnosis, but that's ok.
My older brother has migraines, allergies (i do too), asthma (i do too) and hyper mobility. My younger brother, as far as I know, doesn't have any of this... praise God!
And i'm glad I know now why my body does what it does, because with this being genetic, I have to be careful with my daughters. My oldest daughter also has it. She is 13 and still wears pull-ups because her bladder is stretchy and hasn't matured the way it should, she is VERY hyper mobile, just like I was at her age (used to put my feet behind my head), has ADHD, gets tired very easily, sprains her ankles very easily (needs insoles because her ankles roll in). I'm glad I know what to do to help her. Has some anxiety and social depression. She has gone through physical therapy to strengthen her joints, has a rheumatologist and a urologist (her bladder and kidneys look normal, so maybe some pelvic floor dysfunction). She also has POTS (thankfully she was able to get a blood work up and an EKG this last year).
My youngest daughter has constipation issues, so she's on miralax, and also has ADHD and anxiety.
My middle child sprains herself easily and has a major adjustment disorder and anxiety, some OCD.
So grateful for a husband who is there through it all, willing to learn and willing to help.
.......
Interestingly this is just the beginning of my journey as a Zebra. I was finally diagnosed 6-26-2018, after lots of ruling out of other things.
I don't have any immune disorders, i don't have any arthritis, no lupus, no gout.. my rheumatologist thinks there might be something else going on. (i'm being tested for Aspergers Syndrome in March)
I do have vitamin D deficiency, so i take 5000IU of Vit D 3 every day to help my energy (nice to not feel so sluggish).
And because of my dads side family history of heart problems (probably where the EDS comes from) I take fish oil and check my heart rate and EKG on my watch as often as I think of it.
At this point, i'm getting used to being an advocate for myself (being braver than I used to be and this does cause some anxiety, but i'm doing it), and starting to advocate for my children as well. I actually switched them from their pediatrician (we've been with the same one since birth) to a new one, because I don't feel like he was really listening to our concerns. The older they were getting, the less he was helpful. So i'm glad we have fresh eyes on my children. :)
Monday, January 28, 2019
letting go of the past
so something happened to me about 5 years ago now that caused a significant enough trauma that i needed counseling and i had to learn to work through some dreams and emotions that i'd never felt before.
something that i loved had hurt me.
i struggled and i questioned and i prayed and i sought advice and counsel.
...
my husband recently has been redoing our home office, so that means i'm going to see my old computer files. and among them were these journal entries i had during that time.
i printed them off, deleted them from the computer, and took the time to go through them, thinking it would bring me back to that place i was in, because i still had thoughts about it every now and then.
...
nothing.
I threw them out.
slight anxiety, but mostly it felt like i was sorry for the person i had been and what had happened to her.
but i personally, emotionally, didn't feel anything but relief.. there was no mental struggle, no wave of emotions..
my husband and i had worked through this together, so i knew he was helping me, being by my side, through the anxiety, the depression, the crying and the detachment.
...
because i had not ignored this trauma, i had faced it head on and sought someone to help me work through what i was feeling, and help me clarify that it was not my fault and that this person needed to face their own actions..
i am healed.
i feel free of it.
i have forgiven and (mostly) forgotten what had happened. it becomes more and more faint every day. i barely even think of it or remember it even happened anymore.
praise God for the people He put in my life and the steps that I bravely took to rid myself of it.
...
I am not that person anymore.
It feels great to know that i've washed myself of it!
I'm clean.
something that i loved had hurt me.
i struggled and i questioned and i prayed and i sought advice and counsel.
...
my husband recently has been redoing our home office, so that means i'm going to see my old computer files. and among them were these journal entries i had during that time.
i printed them off, deleted them from the computer, and took the time to go through them, thinking it would bring me back to that place i was in, because i still had thoughts about it every now and then.
...
nothing.
I threw them out.
slight anxiety, but mostly it felt like i was sorry for the person i had been and what had happened to her.
but i personally, emotionally, didn't feel anything but relief.. there was no mental struggle, no wave of emotions..
my husband and i had worked through this together, so i knew he was helping me, being by my side, through the anxiety, the depression, the crying and the detachment.
...
because i had not ignored this trauma, i had faced it head on and sought someone to help me work through what i was feeling, and help me clarify that it was not my fault and that this person needed to face their own actions..
i am healed.
i feel free of it.
i have forgiven and (mostly) forgotten what had happened. it becomes more and more faint every day. i barely even think of it or remember it even happened anymore.
praise God for the people He put in my life and the steps that I bravely took to rid myself of it.
...
I am not that person anymore.
It feels great to know that i've washed myself of it!
I'm clean.
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