Friday, December 18, 2009 that a wordd?

Hard week, well hard last two weeks. Glad Christmas break is here.

Here are some videos thought you might like.


Hoping to update this weekend. Best wishes to all.

Monday, November 23, 2009

Its been a

Well its been a while.. where have I been.. Frustrated.
So I left off, about to get my myleogram on my lower back so they can then "figure out" what they are going to do to "treat" it.

After I left my massage therapy appt the Day before the scheduled test (did I mention I started getting massages, they are truly a blessing!) I got a phone call from the hospital, " I'm sorry we are going to have to cancel tomorrow, the machine broke down". " But we can get you back in on Monday" Well that's just lovely. Monday would be great except I have a life, I have to do what little work I can, I had this scheduled for weeks, had this scheduled on a Friday, my one day off..arranged for my Grandparents to come down and take me, arranged care for Pokey and so on. If I didn't need the money so bad I would have just said sure schedule me on Monday. Well my life does not work like that. So I had to go out another TWO weeks. I was in tears.

November 6th. My Grandparents come down from Bothell to get me and take me to check in at 9am at Swedish. I get there check in, gown on, slippers on, IV check....."did you stop taking xx medication?".....Yes a week ago ( not to mention this is my joint medication that I have now had to stop twice for a week and my joints are on FIRE by this point, feels like they are fully of prickly cement) "okay and did you discontinue you xxx medication as well?".....What no one said to stop that one, never. Not last time not this time! " Well Wait right here and I'm going to have to call the doctor." My mind is racing have got to be kidding me... call my doctor......The nurse comes in and hands me the phone. I speak with the Doctor. He explains how "someone" was suppose to tell me to stop taking another medication 48 hours before the procedure...blah this point I am crying. He is nice on the phone and even offers to do the procedure at 8pm if that's what will work with my schedule. Now in my experience as a Surgical coordinator I am fully aware that a Surgeon will tell the patient just about anything, not to be mean, but because they are most willing to do what it takes to get things done, but in reality, there are no nurses, no one in the PACU etc at 8pm which would have been a great time for me to schedule because then it would have not interfered with anything! So I went home and I made some rather angry phone calls.

I guess someone was suppose to go over all my meds from the hospital...check a nurse called and did all that....BUT also someone was suppose to call and go over everything also from my Docs one ever did that at all....either time. So in the end I finally got it rescheduled for the following Wednesday (Veterans Day). I got there and managed to get a parking voucher, a coffee voucher and a cafe voucher, I was glad I spoke up this time!

The myleogram was a bit scary, for those that do not know my only experience with a needle in my back was when I had Pokey. I had two failed epidurals one of which made the left side of my face numb and in the end when we went for the emergency c-section and they were doing the spinal block I had a very rare complication, the spinal block did not stop and it ended up in whats called a "total spinal block". Imagine being flipped over and with your last little breath telling people you cant breath and the paralysis continues to take over your whole body. This is why I was not conscious and intubated when Pokey arrived. Sooooo needless to say I knew this was totally different but even the thought of a needle in my spine just freaked me. They were nice enough to give me some valium before hand and answered ALL of my questions. There were some very uncomfortable times and the worst part was when they "hit a nerve root" in addition to when the contrast is actually injected. The injection gives this very heave sensation and brings on a feeling a very heavy back pain. When you finally go to the CT machine you have to Log Roll a few times and that was not easy but the worst part was over....or so I thought.

Before being discharged about 4 hours later they ask you if you have a headache. I did indeed have a headache but I commonly get headaches so I was not sure if it was just one coming on. I kinda felt like I just needed to get out of the hospital. Well right after I left, i vomited, but I felt better, I was on bed rest for the day and that was that. The next day was pretty much bed rest as well, but I did notice that when I got up I would get a headache, it was not one of my normal migraines or cluster headaches, this was in the back of my head it felt like I needed to squeeze my head very very hard. This just kept getting worse until Saturday when I thought my head was going to explode! When I laid down i would somewhat go away but not completely, and when I sat or stood up it was like I was drunk! My eyes hurt, my ears rang and oh my head. We called the on call doc and they knew what is was right away and had me come right in. They sent me up to the PACU and the anesthesiologist on call performed a bloodpatch because I had a spinal headache due to leaking spinal fluid out of the hole they poked in my spine ( it never closed! They simplest way the doc put it was my brain was bumping against the back of my skull every time I got up because of the lask of fluid ) So they took 25cc's of blood out of my arm and put it right back into the hole in my back. It was immediate relief! I got this warm feeling in the back of my head, very similar to the warm feeling I get on bad POTS days and it was 80% better. It took another couple of hours before I felt back to normal and then bed rest for all of Sunday. By Monday I was back to normal. Whewwww!! What and adventure.

So now I have been playing phone tag with my Doc. I called left a message. He called (as I was in the bathroom!!!!) left a message. I called back first thing in the am left a message, had my phone on me all day and have yet to hear back....oh I called again and left another message...but its now 6 days later. Whatever, Im so fed up with the whole neuro office its unreal. That will be a whole different post and its coming I promise. From day one this office has screwed up and now I pay for it. Now Im lucky that I even have insurance next month and I still have no solution for my problem. Just More problems with my back. Bone spur, narrowing in addition to everything else. I started seeking treatment in August its now almost December. ? Hum. My COBRA insurance rate goes back up to its full 565$ a month next month because my rate reduction from Mr. Obama expires and without my Grandparents I would not have insurance at all. But heres my delima for January, do I continue with the super High rate and fork over the new deductible etc..or do I start over with a new insurance, new deductible, new copays etc...lower coverage..right now I have some of the best coverage out there and can keep it until August of 2010.....if I win the Lottery~!!! All I know is they need to figure out how to fix this darn back in December. Please.

Wednesday, October 21, 2009

You have been dismissed

Sp Pt gave up on me today. I say gave up because I call it just that. Don't get me wrong we all tried. Don't get me wrong I get frustrated, Its painful and feels like torture but I endure it with the hope that someday I will have "more stability" and pain control. Its not happening. I know this and they know this. I don't know if the events of Monday just hastened their decision or what but they just calmly told me today that things are not improving, I am not gaining any strength, there is not improvement in the clicking in my hips, no improvement in my pain and nothing more they can suggested targeted one on one hydrotherapy. Humm. Okay so here's the deal, I'm looking for pain control, errr pain.....ease up ed ness.....I guess thats what I'm trying to say. My PCP told me straight out last time I saw him that he thinks some of my issues are just EDS issues and are never going to be resolved and that unfortunately some doctors are just to timid to tell you that flat out, and so now we have to work on pain control. So it was my hope this PT would help. It didnt. So I will follow up with the hip doc and see what type of shots he can offer in the area and go from there, surgery is not an option so at least I know.... though frustrated at times, I tried my hardest at PT and will do the same with the water therapy as well. As far as my sacroiliac joint and disc tear issue, my Meylogram is on Friday and again its another go from there issue. That one is a bit more pressing for me as it is higher up on the pain scale but they both just cause so much anguish I wish I could go bury it in the backyard...the pain that is.

On a Happy note I get my home TENS unit tomorrow...YIPPEEE! I cant tell you how excited I am to have one! If only I could wear one of those 24-7. I also start massage therapy tomorrow, so we shall see how that goes.

Next week I will add another kiddo to the mix. Along with Pokey and the Chicklets, I will be watching another little girl after school as well as on non-school days, shes adorable and just moved up from Texas. Lord knows I need the extra money so Pokey and I are excited to be having her join us. Kinda funny, I never thought I would be a stay at home mom watching 5 kiddos! Thank goodness they are all capable of doing things on their own and have very understanding parents! =) (Thanks Grandma C!...we have had some interesting stories!) Pokeys Dad and I will be swapping vehicles too, so I will be using the truck and he will be saving gas...I only drive about 1 mile a week(not counting pt..then I add about 5)!! Yeah the school is 2 blocks away but walking that anymore is like asking me to ice skate blind through a mine field....Any way we are happy to have Miss M along.

Monday, October 19, 2009

Just another Monday...

Today was a lovely day...and now I have a question. These days they seem to have handicapped doors everywhere you go. I mean, I use them everywhere! Pokey knows where they are all too, he knows doors are pretty heavy sometimes and not to pull his arms and so know being a real live Gumby you would think I know these things by now...but no. I was in a hurry... I was on my Way to PT...( the useless pt I endure for my back, SI joint and hips...that I go to twice to three times a week at 15$ a pop that I don't have in the first place....that is I take the punishment for just to get the 20 minutes of TENS treatment at the end...anyway another blog)....I was late...I rushed through the door.. and out came the arm...shoulder.....Lets see....Left Patella came out two weeks ago, got that one in with some help from a cousin, Left shoulder came our 7 Weeks ago and my PCP got it back in...but this Right shoulder was not going anywhere...I was closer to the ER and I guess they were rather freaked/grossed out at the PT office and would not even let me leave. I told them I would drive myself to my doc, they refused, "ohhh my how could you" I tried not to laugh at the lady I explained to her that it was really no problem, I am very skilled at doing things with one arm, leg see I am typing this as we speak with one hand...nifty huh.. but she was horrified. Needless to say she drove me to the er....even after I told her just a few weeks prior I drove myself to my PCP because the other arm was out and had even drove so a few weeks before that as it had happened again..other arm. I even explained that my middle finger came out three weeks ago and that was more painful at that moment then my arm was but this arguing about me getting somewhere was not going to help. Oh yeah my why the heck at at PT office would they not have a handicapped access door??....I KNOW there are a lot of people coming into the office to rehab their shoulders, elbows, etc...hum, just a thought..or maybe for the little old me...hahahahaha.

So the best part of the hospital today was the front desk lady, I'm sure she had a long hard day, as I walked in at 230 and it was packed, but I told her my arm was dislocated and she looked at me and smirked and said " well i just want you to know its going to be about a two hour wait " and I mean there was nothing caring or nice about her. At this point I am crying, pain has fully set in , muscles are contorting all sorts of ways, my head is now pounding form the clenching of my jaw, I'm a little erked about another 100$ er bill and I just told this woman my arm is dislocated and she wants me to wait for 2 hours...... Now I don't know much, but I do know if your life or limb is at risk you are numbers 1 & 2 on the I calmly pointed to my purple hand and forcefully pulled down my shirt to reveal my shoulder hanging much lower than it should be and I said " well thats fine but my shoulder is clearly dislocated and hand is loosing feeling, so if you could please tell triage that part asap I would appreciate not loosing my limb today, thank you" The triage nurse came right over and took me back.

The doc was super nice, asked if he could give it one try without anything and i said go for it, then just asked what I wanted, I told him I would rather forgo the fuss of narcotics, just please sedate me fix it and send me which he did. Thanks Dr. Garcia. Its a rare occasion when a ER Doc listens to you and when one does you wish you could keep him in your pocket or on speed dial at least.

Pokey is such a cutie...Uncle Jason went to pick him up at school and He saw him and just told his teacher, well my mom sent Uncle Jason to come and get me. Auntie Harmony came and escorted me away from the flu factory, thank goodness for family.

Busy Week....Picture Day tomorrow....CT Myelogram Friday..Bday Party for Auntie Madison on Saturday and a Cocktail party we have to attend, Football of course on Sunday.....Still have not heard any more on my disability appeal...please keep your fingers crossed....Grandma Julie is doing much much better....happy thoughts for her....

Saturday, October 17, 2009

Mom, I'm to young for a Girlfriend!

Pokey can sure say the funniest things! He seems to be pretty partial to a couple girls in his class, Birttany and Reah...every time he talks about them he giggles uncontrollably. " Mom for center time yesterday I played with the Marker Board .....with Brittany...muahhh ahahahehehehe", it is so funny. So I asked him, Is she your girlfriend? " No Mom! I am to young to have a girlfriend, shes just a girl thats my friend!" Well, I guess you are a Big 5 year old but too young for some things, very smart thinking little one, lets keep it that way!

Its amazing to think hes now 5, wow where have these past 5 years gone. Hes got all of these friends, and this amazing little personality that just wows me. All of a sudden he has been asking about a little brother, I asked him if his Auntie Brandy had put him up to that...he said no. But I was not sure where that was all coming from. So I put ones of his favorite teddy bears into his first Halloween costume and told him that was about as close to a little brother as he was going to get and he seemed to be happy with it! Silly little guy.

Thursday, October 8, 2009

Kidney stones and such fun!!

Well...last week was a hoot!...I managed to get my 4th bout of kidney stones since April...! Not sure what the deal is with those!....Let me tell you they are painful. When just about every joint in your body dislocates you think you have a high pain tolerance...nope, these little teeny tiny calcium oxalate stones, bring me to a tightly rolled fetal position on the floor writhing in the most pain I can imagine...and it comes in LABOR....yikes! grr.

Speaking of Labor....My little Pokey turns 5 tomorrow. Wow. I cant even begin to imagine it has been 5 years since I had a Dr. appointment and my blood pressure was too high, not to mention someone was already 4 days past his due date....So we checked into the hospital and they began to induce me. 5 Years ago today I began my journey bringing my son into this world and 5 years ago today he began to change my life forever.

Grandma Julie started her chemo last week, her medication cost over $8,000.00 and by being double covered with her and Grandpa Davids insurance she only had to pay her 15.00 copay! She was doing very well but managed to come down with pneumonia and was back at the hospital for resp. distress and pain.

Due to the Kidney Stones I missed the Light the Night Walk for my Friend Melissa, they raised a good amount of money and had a good time. Shes still having some issues with her breathing and they upped her prednisone again. For anyone who has ever been on that stuff you know how icky it is, so here's hoping she gets better soon, especially with flu season coming.

Pokey had his first fall at school, he tried running on the track and rolled his ankle then of course bit it and scraped his hand up pretty good. Luckily our neighbor boy saw him fall (hes in 2nd grade) and took him to the nurse. he let her clean him his wounds but he wouldn't let her touch his ring and pinky finger. He told her they bent back and he just wanted ice. She called me and told me he had been there for about 20 minutes but school was almost out so I told her to just have him wait there. He was guarding his hand and would not let me touch his fingers at all, I asked him if they popped and he said his little finger did but it was "fixed". It looked swollen and the nurse, said he told her the same thing but he just refused to let her look, he just kept telling her it fixed itself it fixed itself it just hurts!.. So I'm not sure what we were dealing with. He did not use the hand that day (Tuesday) and still would not bend those two fingers on Wednesday. We soaked them in some warm water and did some exercises and he seemed to feel better about that and then taped the two together since he was guarding them so much. He did end up with a small bruised area around the joint but today hes got all of his motion back so I'm not overally concerned. So goes our journey.

After Physical Therapy today, I'm going to Pokeys class to have cupcakes with them, they do not have school tomorrow so we get to celebrate his birthday today! Tomorrow I I'm going to grill the urologist about the kidney stones during my follow appointment, what the heck is going on! We are going to dinner with my grandparents tomorrow night to the Black Angus...Yum...Grandpa turned 80 on Monday and Pokey...who has grandpas name as his middle name ( Marion ) like I said will be 5 so it will be a dual bday dinner.

Please keep Grandma Julie, Melissa, Eithene,Carrie, Noah and Elise in your thoughts...and prayers.

Saturday, September 26, 2009

Invisible illness....And LIGHT THE NIGHT

National Invisible Chronic Illness Awareness Week is held annually in September and is a worldwide effort to bring together people who live with invisible chronic illness and those who love them.

30 Things About My Invisible Illness You May Not Know:

1. The illness I live with is: Ehlers-Danlos Syndrome: Hypermobility Type With Crossover features of Type IV, Moderate to Severe POTS. (For a full list see: )

2. I was diagnosed with it in the year: February of 2008 along with my son, and my diagnosis was then again confirmed November of 2008. Though I had symptoms all of my life, no one was able to put all of the pieces of the puzzle together.

4. The biggest adjustment I’ve had to make is: Those two famous words.. Lifestyle Modification..I have had to adjust and modify so many aspects of my life and that in itself i very hard to accept at times.

5. Most people assume: I am a perfectly healthy person.

6. The hardest parts about mornings are: Just getting started, making sure everything is in place before rising, its like your morning safety check..shoulders..check, chest..check...ankles..check...and then just the anticipation of the day, please Lord let everything go smoothly. There is about a 10 minute period interval in the morning when my back pain is "waking up" as I call it and that is hard, it reminds me that the pain does NOT have to be there.

7. My favorite medical TV show is: I dunno, Medical Incredible.

8. A gadget I couldn't live without is: Humm a gadget, well the thingy that helps me open cans and bottles and stuff, sometimes If I don't have it and attempt to open things it not only rips the skin on my hands but will really injure a finger if not holding it right.

9. The hardest part about nights is: Getting comfortable!! Currently my bed rotates between the Bed, the couch and the air mattress.

10. Each day I take: 9 rx medications, 5 vitamins and minerals, and one lovely drink.

11. Regarding alternative treatments: I have not had the opportunity to have any of these but I am just now considering acupuncture in regards to pain...any one have any results???

12. If I had to choose between an invisible illness or visible I would choose: I would choose to not have an illness at all. But this varies at times, many times I wish my pain glowed neon green so people could see my neon orb coming from 10 miles away. But then again it is never nice to be labeled or judged by your cover...humm I guess i get that no matter what.

13. Regarding working and career: This is frustrating. I have worked since I was 16. I have had a dislocation at every job I have had, no matter how simple the job was....just like in my every day life. I run into the problem of chronic absences and that just does not fly with an employer..even when you work for one of the most prestigious children's hospitals in the country you still become a "burden on your department" (okay so that was just one persons point of view but trust me those words stung)..I do what I can but I cant help a lot of things. I left a wonderful job in January because it was just too much and am now struggling to make ends meet with my small income I make watching some neighbor children. At least I get to be here for my son, that part makes up for all the hardships not working has brought on. I have applied for disability and have already been denied once and am working on my first appeal.

14. People would be surprised to know: Well besides that I am a football fanatic...humm...Probaly that if I could be anything I would be a Geologist.

15. The hardest thing to accept about my new reality has been: That there are simply things I cannot do. I get mad somethings because Pokeys Dad will say let me help you...or just automatically do something for me..and I will yell.."I'm not helpless, I can do it!" That I do have a new normal and that it is OK.

16. Something I never thought I could do with my illness that I did was: Accept my lifestyle Modifications!!

17. The commercials about my illness: There are none but if there were I imagine they would be kinda funny...okay so maybe that's a bit rude but I'm just picturing a picture of a person just walking....then like...pop..out goes a knee...then an ankle and so on...."Are you plagued with frequent dislocations....".....

18. Something I really miss doing since I was diagnosed is: I cant say I miss doing anything, I wasn't doing anything I couldn't do, I just do things differently.

19. It was really hard to have to give up: My sense of control. Okay and borrowing from another person here and its totally true..I have given up wearing heels for the most part, only for wedding or special events and usually with a brace or two!

20. A new hobby I have taken up since my diagnosis is: Starting a blog, talking to others that have EDS and educating myself more so I know how to help my son.

21. If I could have one day of feeling normal again I would: Spend one incredible family day out..(the WHOLE day) with Pokey and his Dad then a night alone with Pokeys Dad.

22. My illness has taught me: To be patient, to speak up more, that you will find someone to help you no matter how hopeless it seems.

23. Want to know a secret? I envy a lot of people and they have no idea. And I HATE it when people especially doctors say ...well my your so young to have all these problems..humm maybe if you guys would have figured this all out a heck of long time ago I wouldn't have at least some of these problems...even though I know I know most wold still be here.

24. But I love it when people: Actually ask meaningful questions.

25. My favorite motto, scripture, quote that gets me through tough times is: I have a few but there is a Song by Leann Rimes that I like it has many meanings for me but the chorus is very important. "I will learn to let go what I cannot change, I will learn to forgive what I cannot change, I will learn to love what I cannot change, But I will change, I will change, Whatever I, whenever I can."

26. When someone is diagnosed I’d like to tell them: Hey your not Nuts!! =) I'm glad you finally have answers and welcome to your journey, Please let me know if there is anything I can do for or share with you.

27. Something that has surprised me about living with an illness is: Besides the cost of medications!!!...Humm, The ups and the downs. The good days and the bad days.

28. The nicest thing someone did for me when I wasn’t feeling well was: Come over and taken me for a car place to go and nothing to see but I just needed to go.

29. I’m involved with Invisible Illness Week because: it's a chance to get the word out about EDS, which affects 1:5000 people and is more common than people think.

30. The fact that you read this list makes me feel: One more person has a glimpse of Ehlers Danlos...and no I'm not just lazy today.

*************TONIGHT IS THE LIGHT THE NIGHT WALK******************

Thanks to all who have donated, we will make our trek tonight in honor of Melissa

We didn't make it all the way around last year and My fear is that will be the case this year, but that's not the point, the point is we are there supporting Melissa and her family and helping to fight these nasty blood cancers. I already said that we are walking in Honor of Melissa but its truly an honor to walk for her, shes fought one awesome battle and I am humbled to be a part of her team.

Happy Weekend Everyone...and Seahawks..please stomp on the Bears!!!!

Tuesday, September 22, 2009

If its not one thing its another...

So I have been fighting this lower back pain......that shoots down my leg for years... I mean years... Since I was 17. There was NOTHING that caused it it just literally started one day. Through the years it has come and gone in episodes of 2-3 week intervals and with bedrest, ice, a brace, and meds it would eventually go away. Now don't get me wrong...I would always feel that twinge in the lower back but it was not as severe as an "episode". My current episode has now lasted since June and its literally driving me mental. Last week at night I just cried. I have three places I try to sleep at night... I go from the the couch where I literally sleep with my knees bent up by my the air mattress that I have in the living room...its seems to be soft enough to squish just the right places and with all my pillows I seem to get the most sleep...yet I cant sleep there all night.. Not to mention its where I rest during the day. Its absolutely frustrating. Its like there is a fiery hot poker in my back all the time then someone jams it further in and moves it around...the pain travels all the way down the back of my thigh, down the side of my calf, into my ankle....I HATE it....and I do not use that word lightly. I encourage Pokey to say he dislikes things and not use the word hate...but I HATE this pain. It is making me miserable at the moment.

So I had my MRI, I had my consult with the neurologist, and yesterday I saw the other neurologist, that the first one suggested I see....Why see two you ask...yeah I asked that as well...because though I have degeneration and bulging of some disks and a small annular tear, Dr. #1 did not think that structurally there was any reason for all the pain. So she said PT... I need more than PT...even I know that...Ive been doing PT for the hips and core strengthening which should help that area as well and there has been no improvement...( just like there has been no improvement in the hips but that's another blog ) So I went...I managed to get in a week early because someone canceled, but that in itself sucked butt. I ended up waiting one hour and twenty minutes to see this doc after I had already been there for an hour for additional xrays! I didn't complain because after all I complained that I could not wait another week and needed to be seen sooner than later. So we went over everything.....again and again...Yes the pain does indeed go all the way down...yes my left leg is shorter, yes it hurts to sit more than stand at times, yes the only comfortable position is literally on my belly.....please please help me.

I just cant see what would be the problem on the xrays or this point I lost it. I'm not making this up, my life is miserable right now please get this pain out of my butt!!!! So he suggested yet another test a CT-myelogram basically the inject the spine to see both the bony structures as well as the nerves, it serves as a better diagnostic tool than a MRI or CT alone. Here my fear...putting a needle in my spine....When I had Pokey...I ended up with 9 poke marks in my back...and when things were finally done I ended up with an accidental total spine block that prevented me from breathing on my own...see my fear... I know they wont do that but they do have to administer a small amount of anesthetic before they inject the contrast into the spine so its pretty freaking scary.

After our appointment he came to the conclusion that he is 98% sure its not the bulging disks at all, some pain may be related to the annular tear and leaking fluid but he sure its....drum roll.........a hypermobile sacroiliac joint. Gee go have another hypermobile joint...just add it to the list....hey at least it is not dislocating! But everything fits, the "sciatic" pain the location, the non trauma, Ehlers-Danlos...., Hes never seen a case of a Hypermobile SI joint before only a Hypomobile joint that produces different symptoms. He still wants the test despite my fears to look at the tare, and rule that out or treat that in addition to the SI joint. Problem is with the Hypermobile SI joint there is no real fix....PT, and injections can help and in the end if that does not give me the relief I am seeking there is surgery to fuse the joint, but with my surgical history....who knows.

Needless to say I was happy yet sad when I left. I'm still in pain and I HATE it...did I mention that. Oh and on the way home I managed to blow out a tire right in the middle of I-5!! Thankfully I was right by the exit by Pokeys Dad's work and he was just getting off so he came to the rescue but I had managed to get the tiny jack out and jacked up the car using my foot as I could not turn the darn thing with my arms...they would have come out...and I was not about to be that girl on the side of the road that could do nothing for herself...I knew I couldn't change the whole thing but I was determined to do something. When I finally came home, I got pokey some dinner and then collapsed onto my air mattress to watch my Peyton Manning win another game for me..(I'm now 2-0 in my fantasy league...tied for 1st!..yeah yeah were only going into week 3 but there are only 2 of us in 1st!)

Pokey Asked me for a glass of Grape Soda and I told him just a minute and then I woke up to Pokeys Dad coming home. I just started crying. I was hurting yes, but I felt worthless...maybe that sounds harsh, but it sucks to have your kid ask for something and you tell him just a minute and you close your eyes out of sheer exhaustion and pain and wake up and hour and a half later. He was fine mind you, he just let me be, and if he really needed something he would have woke me up but I just hated the fact that it happened. I hated the fact I didn't do the dishes and get a load of laundry done, I hated the fact I just lied there and did nothing. I hated the fact that this has becoe the pattern of my life the past 9 months... Its like the pain and exhaustion won again. They seem to be winning more and more these days....jerks. I know part of it is keeping up on my medication but in some ways I feel its a cop out at times. Maybe if I didn't have a mom that has been addicted to painkillers for 20+ years I wouldn't be such a stickler about taking them, I don't know what my malfunction is sometimes.

Saturday, September 19, 2009

Hes Stronger than me!

So on Wednesday when I took Pokey to school, I went to give him a kiss on the hand. (We use the kissing hand, when he misses me he can take his hand and rub it on his cheek and think to himself that mommy loves him, mommy loves him,....when he was getting ready for school I read him the book called "The Kissing Hand" so he would not have any separation anxiety) Anyway..he looked up at me and said, "Mom, I don't need the kissing hand anymore"...I said "You don't?"...He then smiled and said "No Mom you are like God, you are always in my heart".
Talk about make me melt on the spot!!! I thought But wait.....I still need my kissing hand...but I didn't, I just stepped back and let him go, hes getting so big I cant even believe it.

Turns out he is quite the character too, since all of the adults in his class go by Mr. or Mrs. he feels that he can be called Mr as well and so in front of his name on all of his papers he writes Mr.! He has already been the line leader, calendar helper and classroom helper and he is very proud of that. He did get switched from the am class to the pm class but that was okay, he still has the same teacher they just had too many kids register for kindergarten at the last minute so at first his class had 42 students in it, now there are 20...much better!

I meet with the OT lady on Wednesday and they do want to put him on whats called a 504 plan. Its just a plan that clearly spells out any modifications and/or accommodations that will be needed for him. I think it rather silly to set it up now as being hes only in kindergarten, there is not much to worry about other than his writing and being careful in PE, its when he gets in the later grades where things become more extensive, but they feel putting it in place now would be the best plan of action. So i have gathered up all the literature I have from the Ehlers-Danlos foundation about meeting the needs of a EDS child and so on and will have our meeting on Wednesday, my fear is that they are just going to try so hard to "fix" the way he writes and hopefully they will listen and realize there is no fix, it is how it is and you can accommodate it, heck hes been writing for quite a while now and no, its not perfect but he can write more than most his age, who cares how he does it, the bottom line is he does it right!!

We were able to go the Puyallup fair last week. We got in for free and got a great deal on parking, then spent hours wandering around the fair. I would have rented a wheelchair but they were all out when we went to inquire about one! So we just took lots of rests. Pokey had a great time, he rode on rides, made a doodah bird, and got to be a cow in a play! We declined to try the chocolate covered bacon, Pokey and his Dad stuck with Corn Dogs and I had a Proshky...yum..

Grandma Julie is doing great, she got her staples out on Monday and has been able to take walks around the lap at a time. It really helps her spirits to be at home. They should have the results of the pathology of the cancer back this week, apparently they know its cancer but when it comes to kidney cancer there are many forms and it has to be tested to see exactly what kind it is.

And of course FOOTBALL season has started and that brings us to Fantasy Football! I played Pokeys Dad in my first game of the season and I am happy to report that I.....won!! and I plan to do the same this week! The Seahawks looked good but I tell ya I still cant stand our the way the first 5 minutes of our game went I could have smooshed that guy!! But in the end he pulled it out.

Friday, September 4, 2009

Growing Up and Letting Go...

Well today I did it. I walked with Pokey in hand, talking the whole way and I watched as he disappeared into the realms of his very first classroom. Today was his first day of Kindergarten. He was very excited but as we got closer to the school and he realized that he would not have his beloved "foxy" with him he did admit to being a bit nervous. I told him I would bring foxy with me when I came to pick him up and not to worry at all because after all we had our kissing hands. ( Wonderful childrens book by the way "The Kissing Hand" ) He is even more excited because our neighbor is in his class too, so he already has one friend in his class, Lucky!

We went yesterday and met the teacher and dropped off the plethora of school supplies that were required of us. He enjoyed the time there and I had no doubt that he will fit in just fine. His Teacher gave him his own pencil holder for his special pencils and I'm not sure if that made him feel singled out or special as he had a rather strange reaction, but then again he was nervous. The teacher quickly changed the subject and asked him what color play dough he would like and of course he said Orange so she promised he would be able to get orange today, and then wrote it down on her desk! That made me feel pretty good, she didn't want to forget, because I tell ya Pokey sure would not have forgotten!

We also had to go and meet with the nurse to return our care plan, she too was very nice. Austin warmed up to her very quickly. She told him at any time if he needed to ice his elbows ankles or knees he could come on in, and get the ice packs himself and just have a seat. She asked him if he knew how to use the ice packs and he said "oh Yeah". =) I was not sure if they would have recess and it turns out they do, so we shall see how that goes. He should be starting his PT soon to get those ankles strong strong strong! Or at least that is the hope, they are so darn loose now you can almost touch his toes to his shins! Sheesh.

I miss him already. But I have my Kissing hand. Pokey loves me Pokey Loves me. I was not the crazy parent that video tapped every moment for like 20 minutes, nor was I the parent in matching polka dots with my child...but I did snap a few photos and a short 25 sec video but I didn't cry!...Thought I might as I walked away but I didn't. I cant believe its school time already, theres no turning back from here. Hes a smart boy and I know he will do well, I cant wait for the stories he will have to tell me! But I do miss sleeping in on our Fridays!
Pictures of him yesterday when we went up to meet the Teacher.
Sitting at his desk Coloring.
This morning all ready to go!
He just adores this backpack!

Out the door at 7:50
I'm not sure, either hes nervous or hes sick of me taking pictures.

Just sitting at his desk.

We made signs for Grandma Jule this morning and I took Pokeys Picture with them. I am going to get them developed as 8x10s and have Pokeys Dad take them down to her. She was finally extubated yesterday afternoon but is very scared and it a lot of pain. Hopefully today she will be moved out of the ICU.

Wednesday, September 2, 2009

Two weeks ago...

Two weeks ago Pokeys Grandma Julie Didn't feel well, she felt under the weather and had a stomach ache. It didn't go away after a few days and her stomach ache increased. She finally went to the doctor after she had to leave work. He doctor knew she was in pain as she is a rather tough woman, shes a construction worker and never complains of anything. Her symptoms were vaguely similar of kidney stone pain, waxing and waining flank pain on her right side, that was intense, a pressure feeling. Renal colic her doctor thought, but instead of just a KUB (Kidney Ureter Bladder ) Xray she ordered an Ultrasound. There was something on the Ultrasound. Many tests ensued.

One week Ago Monday I sat and watched Pokeys father cry, for his mother has Kidney cancer. There was a huge mass on her Kidney and it had done damage and ravaged her body. There was cancer in both lungs, her bones and blood. I watched and consoled in vain as there was nothing I could do, this was his mother, he was her baby, I had no words. She is very sick.

This morning Pokeys Grandpa called me and said they were just waiting, they had been there since 6am and it was now 1030. Grandma Julie wanted to talk to Pokey, he has been the very best medicine for her the last two weeks. They talk and he tells her how he has been drawing pictures for her all morning, "trains and flowers Grandma, I Love You!" About an hour later I get a call from Pokeys Dad after we spoke with Grandma Julie, Grandpa David lost it and called Pokeys Dad, he needed support, he needed someone else there to process this with him, two weeks ago everything was fine in his life now the same disease that took his mom and dad was threatening to take his wife, he wanted to scream at cancer and didnt know what to do anymore....Pokeys Dad left work right away and went to his parents side to wait until they took Grandma Julie in for surgery, and he sat there and most importantly listened to Grandpa David.

This afternoon Grandma Julie went in and had her and embolization procedure then her right kidney, adrenal gland, ureter and many surrounding lymph nodes were removed. Did I mention shes tough?

Tonight when Pokeys Dad told him that he was going to "see someone" Pokey questioned him further. See we have told him that Grandma Julie is sick, and that shes had some doctor appointments at the hospital and may need to have an operation soon, but we have not said all that much. He caught on right away though and demanded to know where his father was going, when he answered he was going to the hospital his voice quivered with fear..."to see Grandma Julie?" His Dad said yes and Pokey was clearly upset, but he said that he wanted to draw her some more pictures and that would make her feel a Little better and for his Dad to tell her that he loves her. Pokey does not care for the hospital, so we want to wait quite a while before we take him to visit her there.

An hour ago I found out her surgery has been complete, she was in the OR for about 6 hours and is now still sedated and in the ICU, she will remain sedated through the night. Things went as well as expected.

Tomorrow will start a new day, we all look forward to tomorrow.

Two weeks from now I don't know where I will be but I know I will be grateful for those two weeks that have passed no matter what as they are a gift that I have been blessed with.

Friday, August 21, 2009

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

Friday, August 14, 2009

Falling into place! Haha!

Well things are falling into 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 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... 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

Thursday, August 13, 2009


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 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

Sunday, August 9, 2009

Kidney Stones are the Devil and 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 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 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

Friday, July 10, 2009


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!

Thursday, July 2, 2009

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 ) 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 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