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.
Showing posts with label PT. Show all posts
Showing posts with label PT. Show all posts
Wednesday, October 21, 2009
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....
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.
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.
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