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 now...you 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 blah...by 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 office....no check..no 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.
Monday, November 23, 2009
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 do.....so...they 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.
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 on.....so yeah.....you 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"...as 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 question...so 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 ladies...like 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 list...so 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 home....to 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....
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 list...so 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 home....to 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.
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 waves...like 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.
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: http://proudtobeaustinsmom.blogspot.com/2009/05/edsmy-diagnosis-dislocations-and.html )
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 ride...no 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******************
http://pages.lightthenight.org/wa/SeattleL09/nicolasamarie8
Thanks to all who have donated, we will make our trek tonight in honor of Melissa
http://mommytomelanieandallison.blogspot.com/
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!!!!
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: http://proudtobeaustinsmom.blogspot.com/2009/05/edsmy-diagnosis-dislocations-and.html )
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 ride...no 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******************
http://pages.lightthenight.org/wa/SeattleL09/nicolasamarie8
Thanks to all who have donated, we will make our trek tonight in honor of Melissa
http://mommytomelanieandallison.blogspot.com/
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 bed....to hard...to the couch where I literally sleep with my knees bent up by my chin...to 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 mri....at 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 figure....me 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.
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 mri....at 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 figure....me 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.
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