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.