2010..two thousand ten...twenty ten...two o one o......hummm...

Well Its another year...yipee.
Things are going okay. Pokey started off the year with a severe bilateral ear infection and a resp. infection...no fun for him. Hes on some antibiotics and doing a bit better, but as of today he still didnt make it to school... Did I mention he Fell down the stairs at Miss. N and Mr. W's place and popped a patella out to the side!! That was interesting…his are sooo squishy its unreal! Hes got quite a bruise around it and limped a little but by a quick straightening out of the leg and a little push it glided right back where it was suppose to be and didnt seem to hurt him that much! He did ask for some Motrin after a bit of limping then took it easy the rest of the day. When I took him in for the ears his Doc looked at it and was pretty impressed.
As for me while 2009 was ending and 2010 was beginning....I got yet again another stone...small one though. BUT I now know the cause of the stones ( they had me do a 24 hour urine collection and a heave duty blood work up) , I do not recall all the technical terms but it is something in regards to my kidneys and urine and all that jazz...so...guess what, the doc added 8 pills to my daily med regime...Potassium.. yum (not)! Holy Smokes! 8 more! Yeah I was like thanks! And I have to be super super strict on the non oxalate diet..so I cant eat anything good anymore...no it just feels that way. Im also not putting out enough urine (sorry for the graphic post) only .75 liters a day and i should be between 2-4..so I nopw have to guzzle fluids fluids fluids. I also got the answer to why I swell up when I eat salt too.. it is all connected to this kidney business. So no wonder I felt like pooo and swelled up when they told me to increase my salt or take salt tabs for my POTS!! Glad I stoped that! Now I have to totally avoid salt as best I can. So did I tell you about the side effects of the potassium...muscle cramps....horrible ones..um everywhere...yikes!
So in addition to this I have had some strange heart problems lately also, tachycardia, just sinus tachycardia but still its annoying and exhausting, my resting rate has been consistent at 115-130. We even had a scary episode where I had to go in because I was all discomboberated and it was at 180,150,180,150...and I was having chest pains and such. There has been some changes in my CT with my Lung Bullae so Im seeing both my cardiologist and my Pulmonary doc later this month. I do have to ck my blood pressure and heart rate three times a day and keep records for all three docs (PCP included) .
My back pain is still there. I had an injection in my SI joint that did nothing for me and I am frustrated. There are many things wrong with the Right side of my spine and spinal canal but all of my pain is one the left side down the Left leg so the doctor is at a loss as am I. I also had a injection in my hip that DID help about 60%. It helped a lot of the soreness and it diminished the pain with the clicking / snapping but the outside of the hip (iliotibial band) is still so frickin sore. The Hip guy did want to go in and do surgery to release a tendon for the internal snapping hip but I declined for now. The back guy I will see again soon and I guess go from there, I cant even express in words how frustrated I am at this, clearly there is something wrong or else there would not be pain down my leg to my ankle so what the heck...maybe its just my quirkiness..like when they gave me a epuridural when Pokey was born and the left side of my face went numb...things like that maybe yes the structural problems are on the right but I have the pain on the left?? I dunno just a thought. Im desperate to get the pain to GO AWAY!


I want all pain to go away really the last two months have been some tough ones joint wise, I have dislocated both shoulders and my right ankle and knee...(fell in the driveway re ankle and patella) Its just such a frustrating never ending cycle. It wears you down, i mean literally wears you down, exhausts your body physically and mentally. There were so many things I wanted to do and great plans I had over the holidays that just never got finished or never even got started for that matter, I just didnt have it in me.If it wasnt for My faithful Wednesday coffee buddy we would not have even had our famous peanut brittle fest this year!

Christmas was nice and hectic of course, but we got through it. The house is almost cleaned up, except for this one spot that keeps eluding the christmas box. This year I could never keep our decorations set up because as soon as I got them how I wanted them, Pokey would have to take about half of them into his room! He was pretty thrilled this year and of Course it was such a sad sad day to have to put his Santa Suit away until Next year.
I finally got my WII!!! I was sooo excited! I have to be so careful because I can totally see myself dislocating or subluxing something but at the same time I feel certian things will be beneficial as well. Im just excited to have the darn thing, after wanting one for so long. It was like when I was little and I wanted was a easy bake oven....yeah finally got it as a "gag" gift when I was like 15...it wasn’t that funny to me by then..I actually took it into my room and used every little mix that came with it! So any way with the Wii it actually does increase family time too. We play wii sports a lot...bowling.. Its funny though with the Tachyacardia I have going on I actually get winded bowing!!( well I get winded doing nothing too…but you get the point)...and its not like Im taking full strides...I just stand there! But its such a blast!...Also the new Super Mario Brothers!! Ohhhh that takes me back, I did manage to get the first nintendo one year for christmas ( my uncle worked for nintendo) and played the original Mario Brothers religiously!

We Spent new Years doing a bunch of nothing....playing Wii and Cards over and Grandma Julies...who is doing very well I must mention. She just finished up her second round of Chemo and the majority of her tumors have shrunk a significant amount, very very good news. I didnt make it to midnight, not even to 10! Pokey and his Dad did but then were out right after I was told.
My biggest wish for this year is to fix my back, it literally drives me nuts at times and I just cant go on like that. I mean it just seams so simple...there is pain ...there is a problem...right?? I also have to figure out this health insurance thing. My reduced rate on my COBRA ran out so Im back to paying 575$ a month!! Yikes...but when I look at the other individual plans out there they just dont compare coverage wise...and Lord knows I need good coverage!!...And of course our lovely state of Washington still has done nothing to improve their state healthcare, as a matter of fact they have made more cuts....so even though I have been on the waiting list for a year, I am no closer to getting any coverage and I am just blessed that pokey is covered....I could go on about my Disability case...but I just gotta leave that up to my Lawyer!! Shes awesome and I just have to hope for the best!

So with all of that being said......Thank goodness for people who need childcare, family that are willing to help and Pokeys Dad for pulling most of our load....without all of that I dont know where we would be.



Thats my Lengthy update....wheeewwww.

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