It is what is it...or not...?? I think NOT

My back/down the leg pain is still here..... I HATE it. They have not found any thing to help. Well lets up another med. Okay so now Im taking 19 pills a day not including any pain medication if I choose to take any!! Holy smokes BatMan thats insane! I am so frustrated ans so is my PCP. He never gets any updated from all these specialist, I mean I have had an injection in my SI joint and seen the neuologist and he has not had an updates since September! Oh and in the note that was sent...it said...I am sending her for a CT meylogram Which I expect to be normal....gee thanks for EXPECTING nothing to be wrong.

WTF...sorry for the language...I just dont get it. I have pain, there HAS to be something wrong. Its NOT going away there has to be something wrong. So he sent me to do this Nerve test...there were points in the test that hurt so bad and I was like YESSS thats the spot...and the Dr. was like "oh everything is totally normal, I wish I had a sutdent in here to show them"....how could it be normal...20 out of 25 spots tested felt fine but the other 5 were painful and felt like THE SPOT to me and your telling me everything is normal...how is that possible!! I just want to yell...Okay Dr. D you know eveything thing its not..you have ran everyt test....what do you think it is?? Just nothing...just my imagniation...sorry I am very very aware that it is not...if it was i would imagine it away in a heartbeat! Again this is a problem that use to come and go...for 12 YEARS...then all of a sudden it is non stop...like a rope that started to fray over the years then finally snapped....I am just having a hard time thinking there is nothing wrong at all....My PCP said if The doc has no answers the next step is a pain specialist and for some reason I just feel like there should be some other route, there should be an answer...I guess thats why I am not a doctor.

This darn potassium stuff is driving me nuts as well. I had not had any muscle cramps for a week or so and then all of a sudden last night they came back with a vengence!! I dont know, I know I dont want the kidney stones but I also would like to not have the horrible muscle cramps every where as well.

I have managed to inflame the joints in my chest as well. That chest pain for a few weeks and its just been getting worse. Its mainly on the right side and horribly uncomfortable. My chest does crack all the time, even more so and painfully so when I wake up so when I saw my doc yesterday he reassured me it was just a good ole connective tissue problem, where the ribs connect. FUN! Yeah and of course after I saw him yesterday I swear it got worse last night....now it feels just super tight in addition to painful. It feels like someone is squeezing my chest and sitting on it...Its hard to explain..its like my chest muscles are super contracting everytime I breathe... and I had been having a fast heartbeat and now it feel like my heart is going slow, slow slow...like a sloth...Yeah Im weird...whatever it is it made it impossible to sleep last night and of course I had to be over that the chicklets house early today.. It seems to have eased a bit so I took a nap this morning after Pokey and I sent them off to school and we came home, but its not gone. My PCP didnt seem to be too concerned about the so called changes theat were noted on the CT with the lunc bullae so I am going to postpone my cardio and pulm appts until april / may...for one I cant afford the co insurance payments right now and for two thats when I am technically due for my annual exams, echo and such.

Pokey and I are headed to my Grandmas tomorrow night, I need the Grandma and Grandpa time...hey I may be 29 but you are never too old for some good old grandparent love!! (aka spoiling)

P.S. My blog posting thingy use to have a spell checker on it and it has seemed to run away....does anyone know how to make it come home??

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

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


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

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

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

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



Thats my Lengthy update....wheeewwww.

Its been a while...so.....

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.

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.