One step forward, two steps back... Or two Forward and One Back...

I think that's Murphy's law right?? I was so excited, I had all these Dr. appointment lined up and all set to go. I just should have known something was too perfect.

First the appointment with the social security doctor seemed to go alright. He was a nice man and didn't pull or prod on anything as I was scared of, was very gentle and seemed very educated on my situation. Of course he is not the one making the determination and I know I still have Weeks, to months of waiting for an answer.

Pokey had a Dr. Appointment as well, just a check up, he is starting school in two weeks so I needed to make sure his immunizations were all up to date, thankgoodness they were so he avoided any shots. Hes now 43 inches tall and 40.5 lbs. We addressed the problems hes having with his hands/fingers and both agreed that we will wait on any sort of ring splints for now and should just work with OT and his teacher about these issues. His ankles are another story, they are just so loose and he falls so much. Even on the way to the doctor he was simple getting out of the car and just stepped down on his ankle sideways and came crashing down onto his knee and was left with a gaping wound on the knee. After his doc wiggled his ankles around he agreed that they need PT and possibly bracing as well and are sending us to Children's Hospital to get started to the PT and go from there. We just have to wait for the referral to go through. Pokeys Dad and I were both relieved as its tough every time your kid runs or walks fast for that matter having to say...."be careful please"...then 8 out of ten times you watch him fall or roll his ankles anyway! He gets frustrated and is always saying "my darn ankle always tries to roll under!" and we just tell him he has to pay attention because his ankles will do that easier than other peoples.

My visit to the New Hip Dr was successful, he at least offered to help me, something the last guy did not even attempt to do. He labeled my hip problems as Internal and External Snapping Hip ( Internal: the iliopsoas tendon snapping over the iliopectineal eminence or femoral head (with or without an enlarged iliopsoas bursa), The underlying abnormality may relate to the size of the iliopectineal eminence or the position of the lesser trochanter // External: caused by subluxation of the iliotibial band over the greater trochanter of the femur ) So in the end he wants me to go through a rigorous bought of PT then if that does not work he did offer injections for the pain, surgery to release the "bands" can be done but I am personally against any surgery as they have not been successful in the past so why bother, I just want to be out of pain.

The Spine Surgeon was a disaster! I originally has an appointment on 9/8. I called back and agreed to drive all the way to Edmonds because I could just not bear to go that long in this much pain. My PCP has already reviewed my MRI with me and he is positive that in the least a nerve block has to be done if not more so needless to say I was so close to tears when I got up to her "office" just to find out she has not been there in over 6 months! I wanted to break down, but I had Pokey and two of the girls with me so that was just not an option. All the office manager could tell me was that, it was their fault, they gave their new scheduler the wrong information. That was no comfort to me. Now I'm back to 9/8, if I make it that long. I tell ya this back pain is literally making me angry at times it makes me irritable and just mad. I just want it fixed or numb or what ever, I just want it to go away. Ive got some major things going on down there: "Multiple Schmorl's Nodes within the lower thoratic spine, Bulging of the disc at L5-S1 with associated mild degenerative disc disease and small right paracentral focal bulge...Small annular tear. Bulging of the L4-L5 dics diffusely and L2-L3 asymmetrically to the right, and rightward curvature of the lowar lumbar spine." Woo Hoo... September 8th please come sooner than later! Haha!

On another completely different note....We have worms! Lots of Worms. Pokey has a Earthworm nursery, and after thinking that we had received bunk earthworm cocoons (only one hatched in 1 month) we have about 9 baby worms that we just transferred into the "soil room". They are now resting comfortable in their soil and have been fed....Why couldn't my child just have had an ant farm, I imagine those are much cleaner. =)

I'm praying for Eithene, Jonah, Noah, The Olives, Melissa, Grandma Julie, Patience, Strength, Determination.

I'm Hopeful for The weekend, for my claim, my hips, Pokey, costume shopping (!)

I'm Thankful for Pokey, for family, for a good cup of coffee, coupons, time, my PCP, every day.

Mommy Zebra / Gumby

Falling into place! Haha!

Well things are falling into place...to us with EDS that's both good and bad. See I went to my PCP today and well things Fell into place as far as the MRI and such goes and I also was so tense and stiff and Hurt so darn bad that as I was getting ready I Fell into.. umm ..I mean out of place and pop a hip...and so goes another Friday morning.





The Dr appointment went well, MRI is Monday night so I can be medicated so I will be comfortable, I don't mint the little tube of death or the pounding sound of doom its the pain of laying on a hard table for that long I could never take, so I have to take something... by having it at night I can take something and Pokeys Dad can drive. I also got "accepted" by the Ortho doc that I "picked" out. ( I say picked because I had to sift through many that would not only accept my insurance...and its good insurance, but one that had some specific credentials too...I'm just picky like that...insurance was a hard one though..but that's a whole other blog..) I was overly excited because they had not even received a copy of my reports from my last hip guy, the doc just literally listened to my "pleading" voicemail and agreed to see me! Wow! When the lady called to schedule she even said "now we are seeing you for your hips first as this is your most pressing issue, correct?"...that means this guy is even willing to see me for other things, my shoulders, knees! Oh my! =) Now I'm not expecting miracles or anything like that, I am fully aware there is no fix but I am determined that there is a better way. Sometimes I feel like pain could drive me insane but in the end it never does, there is always a way to cope, occasionally I give in to the pain meds because... well I have to. Sometimes I just grin and bear it but I tell ya what like I said I'm determined that there is a better way, plain and simple, theres just a better way.

So for some reason my computer decided to shut down twice on Friday night while I was posting so its now Sunday. We spent Saturday in Yakima at my moms, then went to my brothers and had a great time. Now we are home again ready for another week, whewww. Well I have a pretty important Dr. Appointment tomorrow...the social security one, wish me luck, ha! Oh Pokey and I follow a bolg of a little girl with EDS, (her mom keeps her blog), well she has a friend with EDS that is in a singing contest...well if you feel obliged to do so please vote for her... http://www.galesburg.info/davesidol.html we found this on Thursday and were able to vote twice as we noticed it at the chicklets house (you can only vote from one ip address a day) and have since voted many times..... but come on help this little girl with EDS win this small town version of "Idol" Her name is Samantha. Thanks!

I'm Praying for some answers.

I'm Thankful for my family.

I'm Hopeful for more answers.

Mommy Zebra / Gumby

Grrr...

I'm just frustrated....Ha!
Don't get me wrong, I love my PCP...But I just don't understand why I must see Him EVERY time I need a referral to go somewhere. Politics. Why, so he can get yet another 15 bucks out of me. I am simply trying to get in with a spine surgeon because after 12 years on on and off lower back pain / sciatica for my "degenerative disk disease" I have now had an episode last for 6+ weeks with no relief, clearly it is not going away this time and needs some intervention. During the last 12 years I have had flair ups that at their worst would last about 2 maybe 3 weeks but never ever this long. I have indeed seen my doctor for this problem, and being only my PCP there is not much he can do other than heres some Pain meds ( no thanks I have plenty.....and or some muscle relaxers...Those are almost something harder to take, I need to relax yes I agree but If I relax too much...dun dun something else might come out! hahahahah ). So here we go I found a Spine Surgeon, one that actually accepts my insurance, at a hospital that I like, and of course there is a stipulation...I have to have a recent MRI to even schedule. But of course I cant just go get one, I have to have a referral to get one...can I just call my doc and get a referral..no...I have to get up early tomorrow morning and go see the fellow and chat with him about my buttback hurting and then have him hand me the magical form of MRI goodness. Phew. To add to all of this I'm also trying to get a second opinion on my subluxing hips because I just cant stand them anymore....they are painful, the left more than the right, and the left side is where the back pain is as well. They are two distinct pains so I know its just not one in the same. To get into this doctor he has to review everything from my last hip guy and see if he will accept me. Funny thing is they usually refer many of their patients to the last guy that I saw!! I left a pleading message on the guys voicemail about Ehlers-Danlos and that I hope he will be willing to work with me at finding a solution to this complex problem. Cross your fingers for me. Grr. Well at least my new Sacro-Iliac belt is on the way and will hopefully provide some relief....sheesh you would think that the doc writing me a script for a frickin new brace less than a month ago he would just write the darn MRI referral but noooo......grr again.

Mommy Zebra / Gumby

Kidney Stones are the Devil and Pics..fun Stuff!!

Yes it is true, I have said it before and I will say it again, Kidney Stones are the Devil. The pain from having kidney stones is literally like labor pains. It comes in waves....waves of excruciating back stabbing, groin lingering, vomit inducing, horrible no good very bad pain. And then you give birth to the stone....also known as the Devil. This is my Fourth stone in the past year and a half and it was not a fun experience, I must say it was not as bad as the last one, not as large, not as painful and it did not require surgery and hospitalization. But the point is it sucked, and I would like to be rid of these darn things. I had to modify my diet back in April and give up tons of food that I like so I could eliminate the oxalates from my diet as they are the culprit causing the stones, I cant filter them out so I must eliminate them out...no berries, nuts, CHOCOLATE, beans, potatoes, tea, and so much more....The doc said its just residual oxalates making their way out, so I hope they are all out now because I sure would like to be done with this mess and I sure hope I did not give up things like CHOCOLATE for nothing! I'm still on the Flomax, that stuff makes you pee like you cant believe, got another two days to go then I can go back to taking 9 pills a day and not 10! Sheesh!

Lets see.....so we've done some fun things this summer...

There was Oregon, which I talked about but never posted any photos. There were the famous stairs of doom....that were described as "a lovely 70 steps to the beach" ...I loved the sign at the top of the stairs that said "Use stairs at own Risk". Great View, and neat house though. Pokey was the big raffle winner at the casino arcade so we came away on top after the three day weekend.







We were able to take all the Girls and Pokey to the Mariners game and it was in Support of a Good Cause.

Pokey, Auntie H and me went to the Strawberry Festival on Vashon Island...Pokey Met the Saftey Dog.

Of course there was our Trip to Idaho, we had such a good time. I wish we had a chance to go back this summer but we seem to be running out of summer!

Then of course there is the chicklets. Pokey and I have spent a lot of time with them. We have been everywhere from shopping, to the water park, to the museum, library, parks, beach, rollerskating rink and of course their all time favorite place.....7-11 for slurpees!! Here is a pic of us at the park ...notice the science lesson...the solar system we drew with the sidewalk chalk!

We have got to see Miss Madison and that is always such a joy. Its amazing how much her and Austin both act alike and have similar facial features, their little gap in the teeth, their little nose and slightly down slanted eyes, they even have this way of scrunching up their noses when they smile, it totally cracks me up! He loves to hang out with is Auntie Madison!!




Yeah this summer has been full of a lot of fun times. I cant complain, we have been blessed with just enough to get by and that's darn good in my book! And when things look slim, something always seems to come through. The next few weeks will bring us a wedding reception for my mom in Yakima, A Garage Sale, The all Important Fantasy Football Draft, A Wedding where we will be dressed as Superheros (don't worry I will share photos), a Big Day for Pokey, and all the other stuff in between.



I'm Praying for Grant, for my GrandpaZ, For my GrandmaZ, For my Dad, for my Claim,for a new ortho doc, for Stellan,For Noah, For Melissa, for guidance with Pokey.



I'm Thankful for my insurance, for my Grandpa and Grandpa H, for Pokeys Daddy, for Gods way of stepping in during my time of need, I may not notice it at the time but looking back I sure am thankful, for my Dads, For each and every day, For Pokeys smile and the way he wakes me up on the days we get to sleep in.



I'm Hopeful for my claim, for tomorrow, for getting things paid off one day at a time =), for learning to accept there are things I cannot do, for being ok with that, for my new braces!, my new ortho doc, Pokeys Future.



Gumby / Mommy Zebra

Light the Night .. Team Melissa Powell

http://pages.lightthenight.org/wa/SeattleL09/nicolasamarie8

Please check this out~~!

Back....

So we are back..
We had a blast!
I did not want to come home, Pokey did not want to leave either.
Again, I am truly a country girl at heart.
I will post photos soon, the 4th of July party was a blast, we rocked Priest River!
I only managed to dislocated one body part.......Right Knee!! It was a nasty one though. Pokeys Dad and I had a heck of a time getting that knee cap back in place but we managed.
Pokey made a new "Best" friend.

We took all 4 girls to the Mariners game last night and Pokey...they had a BLAST! We even got to see my friends Valerie and Melissa...Melissa is the one I talk about in the Blog, she looks great and it was great to see them and their family.

Okay okay got to head out will have more details and pics later!
Hasta Luego!

Mommy Zebra / Gumby

Ohhhh P.S. I won my appeal on my Insurance!! Thanks for the prayers!

Ahh the weekend....

Well the last few days have been productive. I have only had chicklet D and Pokey to take care of (well on Tuesday D's cousin N joined us for half of the day) so we did some exploring. We found a few new parks in the area and the kids loved it. At the water tower park they got to see a dude climb all the way up the tower and that was by far the coolest thing of the day.


Yesterday we went to the museum in Auburn, its free to get in on Wednesdays and they were having a woodcarving demonstration so I thought the boys might get a kick out of it...well they did, they had a blast at the museum.


Pokey and D in the School house at the Museum.





After the Museum...the gift shop and a ride on Sandy the 10 cent mechanical horse....we went out to the water park where they continued to have a wonderful time!

And of course the ice cream man had to come by and of course they had to get an ice cream. D got a sponge bob and Pokey got a firecracker as they were fresh out of Spidermans...mommy got a cotton candy one of course!

Today after we built our log cabin and wooden train that we acquired at the gift shop yesterday we went to Grandmas and Poppas to hit the pool for a while. It was a little chilly at first but once you got in ohhh it felt good. The boys rode all sorts of float toys and again seemed to have a great day, we topped it off with Slurpees on the way home!

I have been struggling with my POTS (POTS explanation read here http://proudtobeaustinsmom.blogspot.com/2009/05/edsmy-diagnosis-dislocations-and.html ) the last few weeks, its been getting pretty bad...Some days i will have episodes every time I move and I just move slower and extra carefully that day....When I stand up, I hold on...the warm feeling I get in the back of my head is so strange its just unreal, your vision stats to fade to black the warm fuzzy feeling comes like the whole back of your head fell asleep, then hopefully it passes...if not I try to drop to the ground or as close to it in case of a fainting episode. The hot weather has something to do with it so hopefully I will acclimate soon enough. I have been trying to drink massive amounts of water and have been faithfully taking my salt tablets but I just cannot seem to kick it this summer. I have not gone to the extreme of wearing compression stockings....its just been way to hot and I mean those with some shorts, or a skirt....ummm well you know.

Now down to the good stuff....VACATION!...We take off at 4:30am for Priest River, Idaho.....I cannot wait. 4 wheelers, the river, the horses, the quiet, the fresh fresh air, I cant wait...Oh did I say that already! I have my braces packed, yes all of them...ordered by Pokeys Dad and Big Phil, all of our crap is ready and I am antsy to say the least. I love it out there so much....I love the city don't get me wrong, but I am a country girl at heart. I will hate to leave on Monday as it will come to soon...it always does. So off to check the checklist and then to bed....ahhh I can hear the river already!

I'm Praying for baby Noah, Baby Jonah, Praying that Pablos family is being held tight, For my Friend Melissa to finally have some answers.. Please keep her in your prayers shes having some lung problems and that is never any fun. Shes super strong and has already kicked Hodgkins butt so this should be simple for her but please send her and her family good vibes... Also please pray for her friend Andi she is in need of strong prayers as she finishes her battle with cancer, For a Safe Trip, For my claim, For my Insurance, For my sister to find a job.

I'm Hopeful for tomorrow, for my claim and my insurance, for a wonderful 4th of July, for a smooth vacation, for a resolution of my POTS.

I'm Thankful for Pokey, for Pokeys Dad's new Truck, for Pappas pool, for DVR, and for the support I have.

Mommy Zebra / Gumby