Thursday, September 14, 2017

my thoughts on pain..

I was working out this morning at my gym, watching HDTV like i almost always do, and realized there are SO MANY pain killer commercials!
What the heck?

Are people so afraid to feel pain that they medicate constantly?

When your body sends out signals, it's so you can listen to it because it's telling you something, not so you can numb it and shut it up.

We really REALLY need to be better at taking a minute to say "hey, i'm feeling something, what should i do about these feelings?" whether physical or emotional, instead of "oh i don't like this feeling, let's get rid of it with a pill so i don't have to worry about it" and go on your merry way like nothing is wrong.

Ok so don't think i'm saying pain meds are a bad thing. There is a point to where, yes, you need to use them to get through a day.

I just think we rely on them way too much, and this one reason people are a lot more apt to dismiss OTHER people's pain as well.. because in their own lives, it's muted or snuffed.

Tuesday, September 12, 2017

the motorcycle date weekend.. vroom vroom

so my husband and i decided the last weekend before school started (labor day weekend) that he and i were going to have alone time!! the kids went to grandparents houses for the 3 nights and 3.5 days ;) and we swapped bikes with someone else so we would have a more comfortable ride.

Friday.. we basically just did a joy ride close to home to get used to how the bike felt.. stopped at his aunt's house and our old neighbors new house.. and a new place to eat in Morenci. Rumors, where i tried a blackened mushroom burger.. yum! (didn't care for the "blackened" but the rest of the food was so good) And they have this cute little fairy house built into the front of the restaurant under the bar stool seats. HOW COOL

Saturday we slept in.. ahhh yes.
This day was the longest because we drove close to 200 miles.. yikes!
Went down to Hudson Leather- never been there. Pretty neat place! Out in the middle of nowhere.
Stopped at a fun little pub in the basement of an old church for a late lunch/snack.. i tried fried green tomatoes.. YUM! And Brian got this MASSIVE bavarian pretzel. I paid $5 to take a stuffed church mouse home with me because they are funding the renovation of the pipe organ.. which is huge and beautiful!

From there drove down to Ney, Oh and then headed toward the River and took that all the way up to Waterville. (passed through Florida Oh). THAT HURT MY BUTT. lol.
THAT was a long ride!
We made a side stop at Whitehouse OH and ate at the Whitehouse Inn. Again YUM!
Well, my dish wasn't as good as Brian's.. but i decided at each place to eat something different than I have before. I knew i wanted fish and broccoli but i'd never had fish and chips.. didn't like the fish. Loved the fries and the broccoli though ;)

When we got to Toledo, we went to the mall (i used my birthday coupon from Victorias Secret to get 3 purse sized lotions and a lip gloss) and just did some walking around. I was talking to a lady by the smoothie bar (brian got a mango smoothie.. that tasted like chalk) and this lady had a little yorkie in her backpack!! Omgosh and i got to hold him! SO CUTE!

On our way home we saw fireworks going off on 223 so we found them and stopped to watch for a few minutes. :)
When we were about 15 minutes from home on 223, we came upon an accident.. waited about 20 minutes for them to clear it up. The lady in the car behind us had been driving since 6am coming from GA and was going straight up to Albion.. yikes. Now THAT is a long day. We both fell asleep in the living room and woke up during the night to actually go to bed. lol.

Sunday we also slept in ;) stayed home a bit longer. We weren't going to be out as long or drive as far so we took our time. Went up to a beautiful trail near Ann Arbor (we've been there before.. love it) and stopped at this huge shade tree we like to use as a stop on our rides sometimes.
We went to Blimpy burger in Ann Arbor on our way up.. another place we love to go. I tried a double with an egg this time.. something i've never done. Pretty good! I'm glad i got a smaller burger and a smaller side this time.
Just kind of mosied on our way today.. not in a hurry, just hitting up some of our favorite spots. We ended the night going to a movie in Saline and ordering dinner at the theatre. My chicken bacon jalapeƱo was so good! And I got a long island iced tea.. very well made.

Monday we basically only went one place (happy labor day!) out to Artisian Wells (not the restaurant, just the bike shop next door). We were going to stop at Basil Boys for lunch, they were closed. So we were going to go to Brownies, they were closed. So we decided to make it a family affair and picked up the kids from my moms house before we went out to Aubree's.

Went home, rested, put away everything from the weekend..
put Jazmine's hair color in and re-shaved the side of her head for school.

all in all, we drove

and i definitely enjoyed it. :)
it was nice to hang out with my man, just the two of us, for a while.

also reminded me how much of our surroundings we take for granted.
i love where i live!
i love the fields
the corn
the smell of bonfires, manure, fresh cut grass, fresh air..
i love seeing the hawks glide through the air
passing tractors on the road
watching the wildlife scamper around when vehicles go by

Thursday, August 24, 2017

my EDS day

Today is an interesting day.
Woke up with a migraine.
Luckily I didn't have to work today so I stayed in bed as long as I could, and then got up.. *hacking* Sorry about that, my throat's kind of dry.
Made my way down to the kitchen and made my coffee.. took some tylenol migraine. finally the last two pills in the bottle. it doesn't work for me as well as it used to, so i was kind of hoping to get rid of it quickly. i'll be taking excedrin soon.

my left knee is very unstable today, keeps giving out on me, so i'm going to wear my unloader knee brace, which is awesome.
not sure i'll be wearing it when i go out later because i'm going to go swimming with my girls and i don't know if it'd be easier to wear the unloader and just take it off when i go to the pool, or if i should just bring my cane because i have two other stops to make. Decisions ;)
funny the things we take for granted.. which contraption will help me walk best today?

#35yearoldbody #25yearoldskin looks/feels awesome ;) #ifeel60inside.

oh yeah, the cause of the migraine.. my TMJ joint (which actually sounds repetitive).. my TMJ is very tight and i have pain and pressure around the top of my neck/base of my skull..
enter the frozen bag of peas.

also will be wrapping my hands in compression gloves.
yesterday i wore my thumb/wrist wraps with my rings because i've been hyperextending a lot lately and using my hands a lot and it's caught up with me.
my hands feel better than that today.. still musculoskeletal pain through my hands.
I had a bit of inflammation last night, i was icing quite a few of my joints.. today, inflammation not so much, but musculoskeletal pain YYEEAASS.

*whew. out of breath

Oh yeah, i forgot, last night about.. i'm gonna guess 2 or so AM, i woke up with more stabbing rectum pain that i've had before. i haven't had that in about 2.5 months so i'm not quite sure how that happens cause it really not regular. it just pops up out of nowhere. ;)

ahh the Zebra life. *peace.

Wednesday, June 28, 2017

more things about my EDS

I have been photo journaling on good days.
So now i can actually see my hyper mobility and "prove" the brighten score without having the physically do it every time.

I've opened up to some people at work and told them about my newest DX (fibromyalgia and hypermobile joints with a referral to see a geneticist).
They have been fantastic about it!

At this point, i'm treating my body like it is hEDS, because i'm pretty sure that's what it is.. possibly with a cEDS overlap.

One thing i will say about my Dr..
He has been open so far only on some details that i've shared with him.. showing him the hypermobile fingers, talking about possible cardio issues because of my family history and possible heart palpitations. He does understand that there are so many things that go with EDS, that it's like a big pie, and over time we're going to chip away things that it isn't in order to find out what it is, and everything that goes with it. (he actually used that analogy, i stole it) ;)

The thing I didn't like is that when i mentioned the possibility of cardiology and neurology appointments (different shooting pains, possible nerve problems, told him about the weird radiating shooting feelings i've had on the right side of my head twice now, that my fingers and toes get cold easily- bad circulation?), he didn't see to care as much about that right now.. which to me, at least cardiology would seem important, since it deals with my blood pumping muscle. Am I wrong to be concerned about that at this point?

Also when i showed him my varicose veins and told him about all my stretch marks, he said "well, the thing about those is lots of people have them". So does that mean i'm not supposed to be concerned about them?

I think maybe he could be overwhelmed with me as a new patient. ;) He knows about EDS and, of course, has seen many of them himself. So i could be his guinea pig.. who knows. Going to give him the benefit of the doubt.

Just so many things I'm thinking about.
Thanks for listening!


Coffee in hand
receipts ready to check off my banking
want to schedule some fun things for the girls for the summer
going to get 1 more blood test done today (they forgot one) *sigh
mending mending mending
and taking the girls to the Corner Park before our membership expires
(gonna have to wait to renew for just a bit.. finances)

Livy has another horse lesson today
she's running barrels at the fairgrounds next weekend

life ;) 
a nice silent start to my day. 
Thank you God for the chance to wake up to another day!
and for this lovely gift called the coffee bean :D

Tuesday, June 20, 2017

My (possible) life with EDS.

At this point in my life, i'm about 90% certain I am a Zebra.. that means I was born with a collagen disorder called EDS (Ehlers-Danlos Syndrome). Most of the time it's genetic, but every now and then it will manifest itself spontaneously. From the research i've done over the past.. over 2 years now (recommended by a great friend who was recently DIAGNOSED as hEDS).. I'm pretty sure I am hEDS or clEDS. Or even an overlap of the two, which is fairly common.

MY journey..
Some things I look back on my life and see because I am just now realizing how pertinent they are to having these problems with my body.

Like falling out of the same tree, the same spot.. all the time. You'd think I would learn how to balance or climb the tree differently? This, I'm sure, had to do with something called proprioception. Not knowing truly where your body is in a certain space and time. So when I climbed the tree and stood up, I thought I was standing in the right spot far enough away from the edge of the branch, when in reality, gravity took effect, and I fell.. every single time. Flat on my back. This is why also, I'm sure, I would run into things with my bike (causing scrapes and bumps and bruises, that never healed very well, causing the scars I have today).
This same concept of proprioception effects me today (and will always), thinking my bare foot is far enough away from the door, but still getting slammed into, bumping into tables and chairs, cutting my finger with the steak knife while i'm cutting, paper cuts.. you get the drift.

Pains in my body that I thought were normal..
and then pains in my body that made me stop being as active as i wanted to be. Like the year I was a sophomore in high school and I didn't know running on the track was bad for my body.. The sports trainer had to wrap my knee for track meets and after that year (i had chondromalacia patella), I was told I could not run track anymore because of the toll it was taking on my body.
Luckily they still let me be a cheerleader (I think probably because of my height, my strength, and my dedication.. they needed me on the team).  My flexibility helped with this as well, though my hips were hurting.. I was a human pretzel, twisting my legs behind my head and bending my fingers backwards.

I have always been a singer and dancer as well. I have always had a very broad range vocally, and now I feel like it's because of my flexible vocal chords, they stretch more than normal ones do. And my dancing, I can point my toes like a ballerina (without training them, stretching them.. anything) but my toes and ankles aren't strong enough to hold that position with the weight of my body.

When I was 21 (first year we were married) i started needing glasses.. have had worsening myopia and astigmatism ever since.

Even when I was pregnant with my daughters, my first child put my body through the wringer. I was on bedrest and low sodium diet for the last 6 weeks of my pregnancy (diagnosed with PIH, gained 45 lbs), which only ended up being a month because my kidneys were failing and she and I were going to die (yes, literally cease to exist) if they hadn't induced me at 37 weeks after catching it on an NST. My other two daughters were also quick births, never making it past 38 weeks of pregnancy. My second child was only a 4.5 hour labor, no time for meds, 1 push and she popped out. By the third child, I figured out that I really needed to be careful during pregnancy, and we planned her birth because of my labor history.
Needless to say, this all took quite a toll on my body. I was on a z-pack with pregnant with #2, and Amoxicillin with pregnant with #3. By the third one, I started feeling the effects of (what i thought was) arthritis in my hands.

More recently (Dec 2012) I was diagnosed with OA (osteoarthritis) because I went to the dr complaining of inflammation in the joints all over my body and being tired all the time. They diagnosed me without doing any tests.. come to find out now (June 2017) there is no arthritis in my body.. it's the chronic joint pain i deal with every day and sleep apnea that comes with the collagen disorder EDS.
I also went to see the same dr's office back in Dec 2015 because of recurring lower back/upper rectal pain that was/is inconstant but hurts so bad when it happens that I have tears running down my face and i just want to scream. They told me I was constipated and didn't offer any ideas of how to take care of or lessen the discomfort. So screw them.
From then on, i didn't see a Dr for anything. I have basically taken it upon myself to take care of my own sickness and daily discomfort with the help of my family and friends.

I am finally stepping into a future where I am taking care of myself, putting my health on the front burner, and saying "hey, these feelings and pains are not ok. i need to find out why it's happening and how to take care of myself". I have started seeing a DO (doctor of osteopathy) to narrow down what's NOT wrong with me in order to finally figure out what IS wrong with me.

I was diagnosed in 2014 with GAD (generalized anxiety disorder) and was told about an herbal remedy that would help level out my stress levels and hormones.. been using it ever since and it's been amazing.
I went to get my hearing checked this year as well, and I do have hearing loss, just as I thought. I can't hear as clearly, and sometimes have to ask people to repeat what they're saying.

I'm only 34 years old at this point, mind you.

We have done blood tests and hand x-rays recently.. all my bloodwork came back normal and so did my x-rays.
So now i know:
i do NOT have ANY type of arthritis, no gout, no lupus, my Vit D is normal, as is my thyroid.

The fact that I'm hypermobile is actually on paperwork now (omgosh it makes me want to laugh and cry all at once.. so good to see someone take me seriously).. and I have a referral to a genetics counselor to test for the EDS.

Oh my gosh, my life is feeling better all the time now that i'm making my own health a priority.

I have chronic pain, so my Dr says we are going to treat me as if i have Fibromyalgia for now, and continue using my braces/wraps/motility devices for my hypermobile joints and pains.
But i'm SO glad that, with the help of my two best friends (my husband, Brian, and Beth, my friend since high school).. I'm finally on my way to getting answers!

Praise God for this journey!
So glad for the people around me.

I'm not done filling in the parts of my life that have been effected by this, but i'm glad i'm getting somewhere. More to come. ;)

Thursday, May 18, 2017

Invisible Illness- 2 days ago.

As I sit in the handicap shower stall, propping my leg up on the bar so i can shave, i notice my surroundings and how i'm feeling.
My foot is propped all the way up on the bar because my hip is flexible, but i am in pain because because my joint is flexible. My hip tendons don't hold themselves up anymore, and my leg muscles are getting weaker and weaker.
I choke back tears because if anyone saw me using the handicap shower, they would think that i was being rude because of other people that LOOK handicap that need the shower.
Because they see me, and in their mind, they probably see me as a healthy, strong, young woman. Where the funny reality is inside my body that's not who i am.
During my workout, i had to be careful with my heart rate because i started having chest pains. So a lot of cardio was out of the question. I had to be careful stretching because my tendons were popping and my knees were crunching. I had to be careful with my weight lifting because I was feeling very weak.
Today is just not a physically good day.
But i will be ok because I am strong of heart, and i will make it through today because i am here. Today i will need to rest, today i will not get to all the chores in my head that i think i need to do. Because today i need to take care of me. And today, i need to remember that it's not anybody else's business if i feel like i need to use a cane or the handicap shower stall.
That is my business, and I need it. Just because I don't have handicap stamped on my forehead doesn't mean that I can't use that facility. Because inside, that's what my body needs.

Today I am going to be very careful about engaging in conversation with other people because the way i'm physically feeling, I may start crying in the middle of a conversation. I'm going to keep silent as much as possible and I'm going to keep my little safety bubble around myself.
Today I need calm and relaxing and ice and heat.

... This is what invisible illness looks like.