September has numerous awareness illnesses/diseases, a number of them apply to me! One of them is sepsis. Last February/March I went septic and had two bouts of septic shock. Very scary, as they had a hard time getting my blood pressure stabilized and I ended up getting 7L of fluid, plus vasopressers, and very strong IV antibiotics.
I stumbled upon the Sepsis Alliance and they had a section where one could share your story. I did just that and they've used mine to highlight the day, today, chosen for the main awareness!
My story can be found here:
http://www.sepsisalliance.org/faces/marieke_dufresne/
Friday, September 12, 2014
Wednesday, August 13, 2014
Dysautonomia
Another diagnosis I carry is Dysautonomia. Basically it means that my ANS (Autonomic Nervous System) does not work properly. This is directly due to the area that TM hit me. The higher up you get your lesion the more problems you can encounter. My lesion was at T1, so pretty high up.
For me Dysautonomia affects my heart rate, making it go too fast (tachycardia), making my blood pressure drop too low (hypotension), make my stomach empty too slowly (gastroparesis), heat intolerance, as I only sweat from my head so I overheat quickly, it also means that it doesn't control body temperature regulation so I can start to get hot and I then overheat or I get cold and stay cold.
I have medication in pill form to increase my blood pressure, They both help but I often only get numbers just above 100/70, otherwise it's low, 80/50. For the tachycardia I can't take any medication as a side effect of them is to also lower blood pressure. For this I do home infusions of NS (normal saline, same composition of salt that's already in the body). I used to go to the hospital for them, but after 13 months I not only needed it more often, but had no veins left. They scarred down, or blew really easily. The few spots left were painful, not just to poke it but also to run the fluids through. I now have a central line. Mine is called a Broviac, it has one lumen and I can infuse my NS bags through it slow or fast, either by gravity or with my portable IV pump.
A central line enters the chest and is fed through the vessel until it reaches the heart. The tip of the catheter sits just above the entrance to the heart, so it doesn't interfere with its function. I can also get blood drawn through my line. The danger with central lines is that you are more prone to get infections leading to sepsis if one is not careful. I had a Hichman before, it had two lumens, but I went septic and even though it was not due to my line, it was removed and switched to a Broviac. They did this because I had a hard time getting rid of the blood infection and they though that maybe my line was seeded with the bacteria.
Both types of central lines I have had are tunnelled, as I mentioned above.
For more information on dysautonomia go to: www.dinet.org
For more information on central lines go to: http://www.webmd.com/pain-management/tc/central-venous-catheters-topic-overview
For me Dysautonomia affects my heart rate, making it go too fast (tachycardia), making my blood pressure drop too low (hypotension), make my stomach empty too slowly (gastroparesis), heat intolerance, as I only sweat from my head so I overheat quickly, it also means that it doesn't control body temperature regulation so I can start to get hot and I then overheat or I get cold and stay cold.
I have medication in pill form to increase my blood pressure, They both help but I often only get numbers just above 100/70, otherwise it's low, 80/50. For the tachycardia I can't take any medication as a side effect of them is to also lower blood pressure. For this I do home infusions of NS (normal saline, same composition of salt that's already in the body). I used to go to the hospital for them, but after 13 months I not only needed it more often, but had no veins left. They scarred down, or blew really easily. The few spots left were painful, not just to poke it but also to run the fluids through. I now have a central line. Mine is called a Broviac, it has one lumen and I can infuse my NS bags through it slow or fast, either by gravity or with my portable IV pump.
A central line enters the chest and is fed through the vessel until it reaches the heart. The tip of the catheter sits just above the entrance to the heart, so it doesn't interfere with its function. I can also get blood drawn through my line. The danger with central lines is that you are more prone to get infections leading to sepsis if one is not careful. I had a Hichman before, it had two lumens, but I went septic and even though it was not due to my line, it was removed and switched to a Broviac. They did this because I had a hard time getting rid of the blood infection and they though that maybe my line was seeded with the bacteria.
Both types of central lines I have had are tunnelled, as I mentioned above.
For more information on dysautonomia go to: www.dinet.org
For more information on central lines go to: http://www.webmd.com/pain-management/tc/central-venous-catheters-topic-overview
Monday, August 4, 2014
LOBPI
So what is an LOBPI?
As mentioned in my previous post, it stands for Left Obstetrical Brachial Plexus Injury.
Some doctors have refered to this in my medical chart as being congenital, meaning it happened in utero, it isn't and it did not happenthere. It happened as I was being born, basically I was born breech, feet/bum first, got stuck and the doctor panicked as he was not scheduled to be my mom's OBGYN, and definetly was not expecting to have to deliver a 27 weeker! So he pulled and I came un-stuck but not before having my C-spine spinal cord nerves being pulled and injured first. It was to save my life, but other times it happens to babies b/c the doctor is not careful/too rough/too rushed/not up-to-date on methods to turn the baby so that they are no longer stuck on the mother's pelvis.
What has having a OBPI meant?
LOTS of PT, surgery, pain, frustration as a child b/c I could not do certain things like every other kid (monkey bars were imposible as I did not have the strength to hang or do the hand-over-hand motion needed). It means that my humeral head is small, mishapen and is subluxated permenently. I cannot bring my left hand to my mouth or over my head unless I use my right side to put it there. I was 12 when I finally figured out how to get my hair into a ponytail!
It means that my left arm is considerably shorter but I hide it well and no one notices.. It means my shoulder is rounded making spaghetti straps and bra straps impossible to wear unless they are crossed in back.
It meant that at age 14 I had major surgery to give me some external rotation and a more relaxed posture. The surgery worked, sort of. It gave me some external rotation but not against gravity which was a huge disapointment at the time.
I was made fun of in kindergarten, and on and off throughout primary school. Once I hit high school in 7 (high school for us is grade 7-11), one girl would make fun of me behind my back, which of course was not hidden from me.
So long before I got TM, I had already been dealing with a disability and HOURS of PT. Not all PT was for the OBPI though.
**side note**
I started figure skating at age 6. I skated until age 11 then quit formal lessons for 2 years b/c of high school. I then started practicing on my own until age 17 when I started again with a coach, private lessons and HOURS of ice time. This also meant injuries and me being stubborn and not taking the time to rest an injury long enough. So back to PT it was! I didn't care as I loved it, I could spin, jump, be creative and show off! On the ice I was like anyone else, shoulder disability not even really being an issue. I did have to do some moves differently but again I could pretty much cover up the differences and no one was the wiser.
Every 2 years there is a Camp run by UBPN.org for kids/adults and their families for us BPI folk, they also have a small number of traumatic injured adults (car accidents, falls from a horse..).
I love being there. The first time I went I realized that I did not have to "hide" how I held my arm, how my elbow goes up when I use my arm/hand to hold a knife, how I have to put my left arm up on my head to get it to be a helper hand to braid my hair, put it in a ponytail.
I do stand out as I am in a wheelchair or walk with cane/crutches, many think I am a TBPI until I tell them I am OBPI but have another disability (TM).
As mentioned in my previous post, it stands for Left Obstetrical Brachial Plexus Injury.
Some doctors have refered to this in my medical chart as being congenital, meaning it happened in utero, it isn't and it did not happenthere. It happened as I was being born, basically I was born breech, feet/bum first, got stuck and the doctor panicked as he was not scheduled to be my mom's OBGYN, and definetly was not expecting to have to deliver a 27 weeker! So he pulled and I came un-stuck but not before having my C-spine spinal cord nerves being pulled and injured first. It was to save my life, but other times it happens to babies b/c the doctor is not careful/too rough/too rushed/not up-to-date on methods to turn the baby so that they are no longer stuck on the mother's pelvis.
What has having a OBPI meant?
LOTS of PT, surgery, pain, frustration as a child b/c I could not do certain things like every other kid (monkey bars were imposible as I did not have the strength to hang or do the hand-over-hand motion needed). It means that my humeral head is small, mishapen and is subluxated permenently. I cannot bring my left hand to my mouth or over my head unless I use my right side to put it there. I was 12 when I finally figured out how to get my hair into a ponytail!
It means that my left arm is considerably shorter but I hide it well and no one notices.. It means my shoulder is rounded making spaghetti straps and bra straps impossible to wear unless they are crossed in back.
It meant that at age 14 I had major surgery to give me some external rotation and a more relaxed posture. The surgery worked, sort of. It gave me some external rotation but not against gravity which was a huge disapointment at the time.
I was made fun of in kindergarten, and on and off throughout primary school. Once I hit high school in 7 (high school for us is grade 7-11), one girl would make fun of me behind my back, which of course was not hidden from me.
So long before I got TM, I had already been dealing with a disability and HOURS of PT. Not all PT was for the OBPI though.
**side note**
I started figure skating at age 6. I skated until age 11 then quit formal lessons for 2 years b/c of high school. I then started practicing on my own until age 17 when I started again with a coach, private lessons and HOURS of ice time. This also meant injuries and me being stubborn and not taking the time to rest an injury long enough. So back to PT it was! I didn't care as I loved it, I could spin, jump, be creative and show off! On the ice I was like anyone else, shoulder disability not even really being an issue. I did have to do some moves differently but again I could pretty much cover up the differences and no one was the wiser.
Every 2 years there is a Camp run by UBPN.org for kids/adults and their families for us BPI folk, they also have a small number of traumatic injured adults (car accidents, falls from a horse..).
I love being there. The first time I went I realized that I did not have to "hide" how I held my arm, how my elbow goes up when I use my arm/hand to hold a knife, how I have to put my left arm up on my head to get it to be a helper hand to braid my hair, put it in a ponytail.
I do stand out as I am in a wheelchair or walk with cane/crutches, many think I am a TBPI until I tell them I am OBPI but have another disability (TM).
Sunday, August 3, 2014
Who am I?
So, who am I?
1. I am 38 years old
2. I am a registered nurse
3. I LOVE my cats, they are like my children, and they know it!
4. I was a figure skater and used to compete
5. I did ballet for all my teenage years, and some in my early adulthood
6. I have a number of chronic illnesses/disorders/disabilities
7. I don't let any of it stop me from doing what I want to do!
You may be wondering what medical problems I have, well here is the list. I will do my best to explain each of them.
1) To start with, I was born at 27 &1/2 weeks, breech (bum first) and not breathing.
Also b/c of such a traumatic birth I got 2) LOBPI: Left Obstetric Brachial Plexus Injury. The nerves in my cervical spine (neck) were damaged, to the extent that I cannot use my arm normally. I am missing many movements, external rotation, flexion past 45 degrees, extension, supination...
3)Transverse Myelitis
4) Dysautonomia
5) Gastroparesis
6) GERD
7) Chronic migraines
8) Nausea
9) Sleep Apnea
10) HMS/EDS (hyper-mobility syndrome/Ahlers Danlos syndrome)
11) Hydronephrosis of left kidney
I have also had many treatments, surgeries, and a few scary problems that involved life-saving interventions!
So, what is TM you ask?
It stands for Transverse Myelitis. Ok, you ask, what is that? It is a neuroimmunological disorder that attacks the spinal cord once, unless you have the relapsing type that 3% of people with TM get. Luckily (I guess?) I have the one type that strikes once.
So, what does TM do exactly?
Normal, healthy cells in the spine get destroyed by the types of cells that go "eat" cells that have a virus (for example). For some unknown reason these cells (macrophage) can't tell the difference between viral cells vs healthy cells and attacks both. This is what all autoimmune diseases deal with; MS, diabetes, rheumatoid arthritis... For TM, the myelin sheath that covers the cells gets destroyed, and while it does grow back (very, very, slowly. 1mm a day) the exposed underlying nerve gets injured, destroyed to varying degrees. It makes a mess of both motor function (movement) and sensory function (the ability to feel heat, pain, touch)
In my case, I was attacked at T1, (1st thoracic level of the spine, way up the back)
Both sensory and motor function were affected, some places more, others less. I was initially paralyzed from the chest down; I could not move my toes, feet, legs. Could not sit up, roll over/turn over. I was in severe pain, nerve pain to be exact. My body felt like it was on fire, felt like I was being poked my pins, had pain that felt like my foot was in a vice, or being twisted when it was perfectly straight. I could not get comfortable no matter what I did. I was given medication but it's a game of trial and error to get to the right dose of pain meds, which pain meds, and when is the best times to take them.
I was given a high dose of IV Solu-Medrol, a steroid used to decrease swelling in my spine. I was then on oral prednisone. But I still wasn't gaining back any movement. So it was decided to do a 5 day course of IVIG. In my opinion that is what finally allowed my body to start healing itself.
I very slowly started to regain movement.
You might be wondering what winning the lottery has to do with getting TM. Well, when I came into the ER and tests were being done, my GP happened to be working the ER that day and he told me that I had a better chance of winning the lottery, than I did of getting TM. Yes, it's a rare disorder as I mentioned above. Figures vary a bit but it's about 1-5 people per million per year in North America who will get TM.
1. I am 38 years old
2. I am a registered nurse
3. I LOVE my cats, they are like my children, and they know it!
4. I was a figure skater and used to compete
5. I did ballet for all my teenage years, and some in my early adulthood
6. I have a number of chronic illnesses/disorders/disabilities
7. I don't let any of it stop me from doing what I want to do!
You may be wondering what medical problems I have, well here is the list. I will do my best to explain each of them.
1) To start with, I was born at 27 &1/2 weeks, breech (bum first) and not breathing.
Also b/c of such a traumatic birth I got 2) LOBPI: Left Obstetric Brachial Plexus Injury. The nerves in my cervical spine (neck) were damaged, to the extent that I cannot use my arm normally. I am missing many movements, external rotation, flexion past 45 degrees, extension, supination...
3)Transverse Myelitis
4) Dysautonomia
5) Gastroparesis
6) GERD
7) Chronic migraines
8) Nausea
9) Sleep Apnea
10) HMS/EDS (hyper-mobility syndrome/Ahlers Danlos syndrome)
11) Hydronephrosis of left kidney
I have also had many treatments, surgeries, and a few scary problems that involved life-saving interventions!
So, what is TM you ask?
It stands for Transverse Myelitis. Ok, you ask, what is that? It is a neuroimmunological disorder that attacks the spinal cord once, unless you have the relapsing type that 3% of people with TM get. Luckily (I guess?) I have the one type that strikes once.
So, what does TM do exactly?
Normal, healthy cells in the spine get destroyed by the types of cells that go "eat" cells that have a virus (for example). For some unknown reason these cells (macrophage) can't tell the difference between viral cells vs healthy cells and attacks both. This is what all autoimmune diseases deal with; MS, diabetes, rheumatoid arthritis... For TM, the myelin sheath that covers the cells gets destroyed, and while it does grow back (very, very, slowly. 1mm a day) the exposed underlying nerve gets injured, destroyed to varying degrees. It makes a mess of both motor function (movement) and sensory function (the ability to feel heat, pain, touch)
In my case, I was attacked at T1, (1st thoracic level of the spine, way up the back)
Both sensory and motor function were affected, some places more, others less. I was initially paralyzed from the chest down; I could not move my toes, feet, legs. Could not sit up, roll over/turn over. I was in severe pain, nerve pain to be exact. My body felt like it was on fire, felt like I was being poked my pins, had pain that felt like my foot was in a vice, or being twisted when it was perfectly straight. I could not get comfortable no matter what I did. I was given medication but it's a game of trial and error to get to the right dose of pain meds, which pain meds, and when is the best times to take them.
I was given a high dose of IV Solu-Medrol, a steroid used to decrease swelling in my spine. I was then on oral prednisone. But I still wasn't gaining back any movement. So it was decided to do a 5 day course of IVIG. In my opinion that is what finally allowed my body to start healing itself.
I very slowly started to regain movement.
You might be wondering what winning the lottery has to do with getting TM. Well, when I came into the ER and tests were being done, my GP happened to be working the ER that day and he told me that I had a better chance of winning the lottery, than I did of getting TM. Yes, it's a rare disorder as I mentioned above. Figures vary a bit but it's about 1-5 people per million per year in North America who will get TM.
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