Since my last post I slept - I ate lunch - and I slept some more. Brett brough me a Ruben from the famous Jerry's Deli. It was good. Nice to have something to break things up. Oddly enough (and very sad) Jane and Jerry Maurice (friends from Ridgecrest) are here. Jerry is having major heart issues. Jerry is looking like he needs a heart transplant. I listen and realize how "little" my problems seem to be right now. People in my unit of the hospital have typically had brain surgery or something similar effecting their neurological function in a very serious way.
I bring this up as a reminder that I need to refocus. I don't begin to understand what God has planned here. Why am I sitting here in this hospital bed, 18 days after I was admitted. Why are all the doctors stumped? I've had more tests done than I can begin to count or probably even know. I have specialists I don't even know trying to solve this mystery. Today I got angry,frustrated, emotionally overwhelmed. I slept for hours off and on. Sleep my body needed and could use days more. My mind doesn't know how to work this without a plan. What is happening? What is the diagnosis? Based on that diagnosis what is in the future?
Not only do I not have a diagnosis, I have these terrible 'episodes' that feel like seizures. Just as a starting point it would sure be nice to just have a name for them!!! I was told they were myoclonus episodes for a few days, then one of my specialists decided that was incorrect. Just thinking about the fact that I have been in here 18 days I have no name - I can feel my heart race. I am sure my heart monitor that is at the nurses station and monitored down on the 5th floor is wondering what changed. Why has my heart rate changed? What is going on in my head? The cardiologist has me on a beta blocker to treat the heart rate - it has not gone below 100 since this mess started 5 August. They said today that my blood pressure changed and was too low for the medicine. The aide did it manually and I can't help but think "ya right" The next time they took it - an hour later it was 120/78. Sounds much more along the lines of my "regular".
Well long discussion with the gastroenterologist - the best new specialist I have. He comes by every night whether he needs to or not. Apparently we are looking at my adrenal glands as we speak - waiting for the test to come back. He felt the MRI looks fine - for some reason my left abdominal muscle is significantly larger than my right. Curious??? They don't seem to have a reason. I do have one more specialist to look at the MRI. She has done my last two surgeries. In the past, she has found things when no one else has.
Well, out for tonight. I'm suddenly roasting hot and feeling out of breath. Not good signs for me lately.... wish me luck
Monday, August 29, 2011
No Sleep and Frustration
As you can tell by the title - I have not been sleeping so hot the last couple of nights. the morphine pump helps however my pelvic pain has increased to such that as soon as my dose drops a little i wake up hurting. For now we are waiting for the doctor. I am hoping we will have some information from the CT scan of my pelvis. New pretty extreme change in the pain lately. I am not sure what has changed. I am wondering if I either did something during an "episode" or if it is just getting worse. I am having to increase my pain meds greatly. That being said - if something is spelled wrong so sad so sorry. I keep drifting in and out
Sirens, Struggles and Sunflowers
I have the best and most amazing intentions of getting this done every day. I type away each and every chance I get - determined to post every single day. For some reason, I write a lot - but when I look back it makes not so much sense. I'm sure this happens with some of what tht ends up showing up. I am sure it is the morphine I'm on to deal with pain. Thursday night was the worst seizure yet. It began a beautiful evening everything quiet and taken care of, Brett got packed to go home Saturday morning and we were relaxing.
Some important information/background we have learned about my condition: we know that 500 mg of robaxin via IV works (with a cocktail of additional meds) a great prevention for the non-epileptic seizure. There is not an obvious medical reason why this particular muscule relaxer works but so far it is the only means of prevention/intervention. It MUST be given in a very timely manner. The meds didnt show up. I begin having pre/symptoms
**This blog didn't quite get finished but here it is
Some important information/background we have learned about my condition: we know that 500 mg of robaxin via IV works (with a cocktail of additional meds) a great prevention for the non-epileptic seizure. There is not an obvious medical reason why this particular muscule relaxer works but so far it is the only means of prevention/intervention. It MUST be given in a very timely manner. The meds didnt show up. I begin having pre/symptoms
**This blog didn't quite get finished but here it is
When is it Enough
I want to do this blog and my goal is two things - make it honest and daily. Daily hasn't been so easy. My body, mind, fingers don't always cooperate. I also always want to be positive. I am positive most days. Today I am having a hard time. The last weekend has been a major change. I can't tell you what happened when - I can say that it was rough. The MAJOR highlights were Jaimie, Nick and John came to visit, brought beautiful cards, flowers, gifts and most importantly themselves we enjoyed wonderful conversation and a delicious dinner they grabbed for us from California Pizza Kitchen.
Saturday my Dad came by in the morning and sat with me. Later in the morning/lunch time, Correen and Breanna came by - we visited, they went shopping while I rested. When they came back I was in the middle of a pretty good seizure/episode. NOTE: Technically we don't call them seizures because they have ruled out epilepsy. Correen supported me through the rest of the event - just being there, rubbing my arms, back gently. I was so embarrassed to be what I was at that moment yet I have never been so thankful for another human just being there by choice - and seeing I didn't scare her away. Finally my new neurologist has been assigned to the case (We had to fire the original one for multiple reasons). His weekend cover came in during the "episode" and immediately ordered 1mg IV to stop it. Within 20 minutes I felt beat up and worn out as usual. I believe I had another one that night but honestly I can't remember. The days and what happens is all jumbling together.
Sunday is a little bit of a blur. My mom and dad came over in the morning. That was nice because hadn't seen my mom in a couple weeks while she was taking care of my grandparents. The three of us had lunch - and of course of soft serve. My favorite is the bigger the better from downstairs. Brett returned some point after lunch. At dinner - I had a gross combo of food on my dinner tray. Food that I for sure wouldn't have ordered. I'm lucky because Brett went downstairs and got me something yummy. I can't breakdown exactly when they all happened, but I had a total of 4 "not seizure" events between Saturday and Sunday. by the time the last one finished last night it was midnight. Luckily our new neurologists weekend on-call didn't believe "Just work it out" and prescribed 1 mg ativan by IV. They have never worked themselves out alone. We have always had to use medication to stop them.
I am struggling today because for some reason after four attacks in just around 24 hours my body hurts everywhere. I feel frustration with my medical staff because they don't have answers, they keep telling me what it is NOT, the "not seizures" just keep getting more frequent. In addition to all this happy new stuff, I still haven't figured out my pelvic pain - I have learned that thrashing around in a bed harder than I ever thought possible - is NOT good pain treatment for it, not are the alternative twisted back spasms that the "not seizures" bring. I'm taking a list of drugs that has my brain so muted - however I seem to still be wide awake and hurting like hell.
Because the doctors won't make a fucking decision on what the hell is going on with me - I am going to get fucked again. My doctor put me on the neurology floor for a reason. He gave me a very large room with a sitting area, dining table. The nurses on this floor have been perfect. They understand what is happening and what I am experiencing. They are trained for it. Thursday they are moving the entire floor to allow for renovations. Apparently it has been determined that I am not going to stay with the unit because all I have is a a"medical problem' i.e. who knows what the fuck is wrong with me. So, as soon as possible they are planning to pack up me and all my shit and ship me to another floor. They won't understand my "not" seizures at all - if they even see people have seizures. So back to hell where I was the beginning of the stay. It's hard enough that the doctor's don't have a clue what is going on - the relief the whole time has been at minimum the nurses understand. Now we are back to square one in every shape and form.
I am crying and done with the day - it's not even noon.
Saturday my Dad came by in the morning and sat with me. Later in the morning/lunch time, Correen and Breanna came by - we visited, they went shopping while I rested. When they came back I was in the middle of a pretty good seizure/episode. NOTE: Technically we don't call them seizures because they have ruled out epilepsy. Correen supported me through the rest of the event - just being there, rubbing my arms, back gently. I was so embarrassed to be what I was at that moment yet I have never been so thankful for another human just being there by choice - and seeing I didn't scare her away. Finally my new neurologist has been assigned to the case (We had to fire the original one for multiple reasons). His weekend cover came in during the "episode" and immediately ordered 1mg IV to stop it. Within 20 minutes I felt beat up and worn out as usual. I believe I had another one that night but honestly I can't remember. The days and what happens is all jumbling together.
Sunday is a little bit of a blur. My mom and dad came over in the morning. That was nice because hadn't seen my mom in a couple weeks while she was taking care of my grandparents. The three of us had lunch - and of course of soft serve. My favorite is the bigger the better from downstairs. Brett returned some point after lunch. At dinner - I had a gross combo of food on my dinner tray. Food that I for sure wouldn't have ordered. I'm lucky because Brett went downstairs and got me something yummy. I can't breakdown exactly when they all happened, but I had a total of 4 "not seizure" events between Saturday and Sunday. by the time the last one finished last night it was midnight. Luckily our new neurologists weekend on-call didn't believe "Just work it out" and prescribed 1 mg ativan by IV. They have never worked themselves out alone. We have always had to use medication to stop them.
I am struggling today because for some reason after four attacks in just around 24 hours my body hurts everywhere. I feel frustration with my medical staff because they don't have answers, they keep telling me what it is NOT, the "not seizures" just keep getting more frequent. In addition to all this happy new stuff, I still haven't figured out my pelvic pain - I have learned that thrashing around in a bed harder than I ever thought possible - is NOT good pain treatment for it, not are the alternative twisted back spasms that the "not seizures" bring. I'm taking a list of drugs that has my brain so muted - however I seem to still be wide awake and hurting like hell.
Because the doctors won't make a fucking decision on what the hell is going on with me - I am going to get fucked again. My doctor put me on the neurology floor for a reason. He gave me a very large room with a sitting area, dining table. The nurses on this floor have been perfect. They understand what is happening and what I am experiencing. They are trained for it. Thursday they are moving the entire floor to allow for renovations. Apparently it has been determined that I am not going to stay with the unit because all I have is a a"medical problem' i.e. who knows what the fuck is wrong with me. So, as soon as possible they are planning to pack up me and all my shit and ship me to another floor. They won't understand my "not" seizures at all - if they even see people have seizures. So back to hell where I was the beginning of the stay. It's hard enough that the doctor's don't have a clue what is going on - the relief the whole time has been at minimum the nurses understand. Now we are back to square one in every shape and form.
I am crying and done with the day - it's not even noon.
Friday, August 26, 2011
Major Change of Focus
OK So I have actual information. Not the kind that actually does a whole lot to help me - but the kind that gives us some sort of focus that was MUCH more productive than the last two weeks.
So to catch ya'll up. And my honesty is going to open up all kinds of jokes....so let's dive right into it. So the neurologist that initially was part of my specialists team - he of course of the lead being our concern was seizure activity. As I've explained I did not have any seizure activity show on either the initial EEG or the 48 hour EEG. Thus Dr A's determination was that basically something "mental" was causing the issues. A number of things were "assumed" basically it was some sort of a panic attack type response. Therefore, while some doctors were spending their time eliminating life threatening or dangerous issues that would cause similar symptoms, he opted to not follow any neurological path at all - he got the psych team involved.
I had a COMPLETE psych evaluation. the first being a oral/questions etc. with me and a panel of 5 people including a psychologist, psychiatrist, social worker and two specialized individuals. The next step was the completion of the Minnesota Multiphasic Personality Inventory (MMPI). There was something just hilarious about the fact that they had me completing psychological inventory while I was on pretty decent levels of oxycotin, klonopin, ativan, morphine, benedryl and robaxin - if I wasn't on all these meds I'd be having seizures and unable to complete the test. Needless to say I found the test and the questions more than hilarious. You have no idea the things I still think would be hilarious answers. Within 15 minutes of the test being completed the psychologist came to us to say I passed everything and there was no "psychological" reason for the seizures. I have no psychological stress factors and I normal stress in a healthy way. Every thing came out that I am perfectly normal. He then says that the seizures are "psychogenic non-epileptic seizures" He THEN had the audacity to explain that these types of seizures are a result of people not dealing with emotional stress in a normal way.When I asked for an explanation I was told that all they could guess is that the physical stress (although there is no documented case of this) from having chronic pain over the past two years.
Needless to say I had a problem with lack of logic in this. I was then further explained that this was just a "symptom" not a diagnosis. So, the GREAT NEWS it took two weeks in the hospital to "name a symptom" that wasn't accurate based on the definition. I smiled and asked the physicians I saw how we planned to treat. No real answers. The only treatment we are having success with to actually STOP the seizures is a cocktail. I take lyrica 2x a day oral 1 mg 3 times a day, 25 mg of benedryl 3 times a day and IV Robaxin every 6 hours. For my notes we just changed this slightly on Sunday. We were using klonopin vice ativan. I felt like it worked better.
Out for now. Love everyone.
So to catch ya'll up. And my honesty is going to open up all kinds of jokes....so let's dive right into it. So the neurologist that initially was part of my specialists team - he of course of the lead being our concern was seizure activity. As I've explained I did not have any seizure activity show on either the initial EEG or the 48 hour EEG. Thus Dr A's determination was that basically something "mental" was causing the issues. A number of things were "assumed" basically it was some sort of a panic attack type response. Therefore, while some doctors were spending their time eliminating life threatening or dangerous issues that would cause similar symptoms, he opted to not follow any neurological path at all - he got the psych team involved.
I had a COMPLETE psych evaluation. the first being a oral/questions etc. with me and a panel of 5 people including a psychologist, psychiatrist, social worker and two specialized individuals. The next step was the completion of the Minnesota Multiphasic Personality Inventory (MMPI). There was something just hilarious about the fact that they had me completing psychological inventory while I was on pretty decent levels of oxycotin, klonopin, ativan, morphine, benedryl and robaxin - if I wasn't on all these meds I'd be having seizures and unable to complete the test. Needless to say I found the test and the questions more than hilarious. You have no idea the things I still think would be hilarious answers. Within 15 minutes of the test being completed the psychologist came to us to say I passed everything and there was no "psychological" reason for the seizures. I have no psychological stress factors and I normal stress in a healthy way. Every thing came out that I am perfectly normal. He then says that the seizures are "psychogenic non-epileptic seizures" He THEN had the audacity to explain that these types of seizures are a result of people not dealing with emotional stress in a normal way.When I asked for an explanation I was told that all they could guess is that the physical stress (although there is no documented case of this) from having chronic pain over the past two years.
Needless to say I had a problem with lack of logic in this. I was then further explained that this was just a "symptom" not a diagnosis. So, the GREAT NEWS it took two weeks in the hospital to "name a symptom" that wasn't accurate based on the definition. I smiled and asked the physicians I saw how we planned to treat. No real answers. The only treatment we are having success with to actually STOP the seizures is a cocktail. I take lyrica 2x a day oral 1 mg 3 times a day, 25 mg of benedryl 3 times a day and IV Robaxin every 6 hours. For my notes we just changed this slightly on Sunday. We were using klonopin vice ativan. I felt like it worked better.
Out for now. Love everyone.
Wednesday, August 24, 2011
Thanks Daddy!
Had a very nice dinner with Brett and my Daddy! They brought California mailto:!@!@a Ki,@tchen. Chicken Piccatta yummy!! I ventured outdoor offer my comfort _ Veggie Sandwich with schezwan slaw. I'm going to be pulling a Kellen here pretty soon and pig out on the rest. Finished dinner up with coconut frozen yogurt with chocolate chips. I know I am seriously going to gain some serious weight. Lol
My morning was beautiful- a wonderful breakfast with Brett sitting at the table in the room - out of bed . He headed out to do laundry. I curled up in bed delighted for the first time in just a month short of a year - I worked a crossword puzzle and dozed. Just before 1230 the twitching and flailing began. This myoclonus episode lasted about 2 hrs. Extremely frustrating for me - if the pharmacy had filed my medication on time it could have been 20 minutes. Seems to be an ongoing issue that just really tortures my body. These people are careless in that their lack of attention to detail results in my despair.
Full body spasms I don't recommend. You know when you workout - I mean workout so you don't want to move tomorrow..... this would be welcome pain. I am thankful for pain medicine tonight. The PCA morphine has really been helpful. The funniest part is afterwards I am ravenous - its horrifying how much I eat. I wake up those night absolutely having to eat. God help me, I see a major diet in my future.
I must share frustration with the medical process. I want more communication! I have a team of doctors, the lead seems to be as defeated and frustrated. I couldn't even list for sure who is on the team as an active prescribing member, consulting officially, consulting unofficially. They have added acupuncture to my regimen. She isn't consistent. And the one session felt rushed and I hurt like HELL worse than before. The next session is Thursday we'll see....
I must not go without saying thank you to a stranger. Pepe is a wonderful man that Brett has become friends with. Pepe built the frame on our hot rod and has become a dear friend to Brett. I have yet to have to pleasure of meeting him. He has been a great source of support and spirituality during my illness. Angela his wife, neither of us have ever met. She was in town and contacted Brett and brought us lunch. I was very much looking forward to the visit and meeting her. Unfortunately I was so involved shaking and flopping to do
My morning was beautiful- a wonderful breakfast with Brett sitting at the table in the room - out of bed . He headed out to do laundry. I curled up in bed delighted for the first time in just a month short of a year - I worked a crossword puzzle and dozed. Just before 1230 the twitching and flailing began. This myoclonus episode lasted about 2 hrs. Extremely frustrating for me - if the pharmacy had filed my medication on time it could have been 20 minutes. Seems to be an ongoing issue that just really tortures my body. These people are careless in that their lack of attention to detail results in my despair.
Full body spasms I don't recommend. You know when you workout - I mean workout so you don't want to move tomorrow..... this would be welcome pain. I am thankful for pain medicine tonight. The PCA morphine has really been helpful. The funniest part is afterwards I am ravenous - its horrifying how much I eat. I wake up those night absolutely having to eat. God help me, I see a major diet in my future.
I must share frustration with the medical process. I want more communication! I have a team of doctors, the lead seems to be as defeated and frustrated. I couldn't even list for sure who is on the team as an active prescribing member, consulting officially, consulting unofficially. They have added acupuncture to my regimen. She isn't consistent. And the one session felt rushed and I hurt like HELL worse than before. The next session is Thursday we'll see....
I must not go without saying thank you to a stranger. Pepe is a wonderful man that Brett has become friends with. Pepe built the frame on our hot rod and has become a dear friend to Brett. I have yet to have to pleasure of meeting him. He has been a great source of support and spirituality during my illness. Angela his wife, neither of us have ever met. She was in town and contacted Brett and brought us lunch. I was very much looking forward to the visit and meeting her. Unfortunately I was so involved shaking and flopping to do
Tuesday, August 23, 2011
The Blessing of Victor
Victor is an older man, somewhat tall and thin. He isn't what many people imagine in his role as a Clinical Partner (vitals, getting me ice water, straightening my sheets for quite a few days. He is always quiet as he does his job vigilant and with a level of perfectiom- his compassion for his patients is evident. In all our days he has simply introduced himself. No other words were spoken.
Last night he came in about 4 am to take my vitals. He looked gently at me then glanced to Brett sound asleep.
Victor said "You have true love. I have quietly observed you both. I don't see this often."
I told him yes I agreed, and I am truely very blessed. And we discussed that he also had been married 33 amazing years. He asked about my children which I of course bragged and asked about his. He shared he had lost his son of a rare respiratory disease in 2007 at the age of 22. I shared the loss of Miah. How no parent should ever suffer what he had. It was as if he had never discussed it with anyone. As he left for the night he came in and looked me in the eyes and said "You will never know what tonight meant to me."
Never underestimate the power of a simple kind word. He was here to care for just very basic needs and in the end we both were blessed.
Last night he came in about 4 am to take my vitals. He looked gently at me then glanced to Brett sound asleep.
Victor said "You have true love. I have quietly observed you both. I don't see this often."
I told him yes I agreed, and I am truely very blessed. And we discussed that he also had been married 33 amazing years. He asked about my children which I of course bragged and asked about his. He shared he had lost his son of a rare respiratory disease in 2007 at the age of 22. I shared the loss of Miah. How no parent should ever suffer what he had. It was as if he had never discussed it with anyone. As he left for the night he came in and looked me in the eyes and said "You will never know what tonight meant to me."
Never underestimate the power of a simple kind word. He was here to care for just very basic needs and in the end we both were blessed.
Wires, tubes and buttons....Oh MY!!! (2)
Ok trying something new, emailing my post in. The last one dared to cut I'm off. Before I go into my medical challenges today medically speaking - I learned a very valuable lesson on dreams today. Most of you know despite my illness I have had opportunities to do some pin-up modeling. The last opportunity my gut said just Do It. My mind/body wasn't quite as such either, but with encouragement from my always amazing husband I went along with it. I got word today fro, Shannon Toy, my photographer - some of the photos have been chosen for a 3 page spread for Hot Rods and Pinups Publishing Company and Contest.
My goal going doing modeling has been to be published - I assumed an amateur small shot. This just is beyond a dream come true. I have one to their coffee table books from the past. My second BIG dream is to become a Pinup Angel providing support for our troops - USO tour would be the ultimate.
Something else I have dreamt about even longer for as long as I can remembered. Write- a book, a novel - a blog for now. I have read a a few autobiographies that started just this way.
Now to medical - I'm going to be blunt- one of the worst days in many months. I woke up from a very hard sleep at 1:30 am with the worst pain and it seemed everywhere. It was terrible. They say 10 they aren't kidding. The pain meds they administered did help my right side. The left nothing. I cried like a baby. The doctors all argued over who was responsible for pain meds- neuro wouldn't because of cardio symptoms, cardio because of neuro issues, internist bc pain management supposed to - and they had quit because the gastro had removed all tylenol meds for a 24 hr test. Finally 7+ hours later they figured something out and my internist gave me a pain pump with morphine. Along with a heart monitor (apparently that had nothing to do with meds), I have to be on oxygen because of respiration's. I have 2 IV ports one in each arm because the robaxin (prevents stops myoclous) can be administered with morphine or much else apparently. Luckily it is only hooked up for an hour 4 times a day. You should seriously see the wires and tubes that are every where....and as we all know I'm not exactly graceful. Next thing you know I'm going to have some incident involving getting tangled, trying to walk
So despite all that I got a good dose in me, ate lunch and was OUT for a good nap and Brett who had been up just as long went for an almost 3 mile walk.
I am writing this in the wee hours when I should be sleeping. ....
My goal going doing modeling has been to be published - I assumed an amateur small shot. This just is beyond a dream come true. I have one to their coffee table books from the past. My second BIG dream is to become a Pinup Angel providing support for our troops - USO tour would be the ultimate.
Something else I have dreamt about even longer for as long as I can remembered. Write- a book, a novel - a blog for now. I have read a a few autobiographies that started just this way.
Now to medical - I'm going to be blunt- one of the worst days in many months. I woke up from a very hard sleep at 1:30 am with the worst pain and it seemed everywhere. It was terrible. They say 10 they aren't kidding. The pain meds they administered did help my right side. The left nothing. I cried like a baby. The doctors all argued over who was responsible for pain meds- neuro wouldn't because of cardio symptoms, cardio because of neuro issues, internist bc pain management supposed to - and they had quit because the gastro had removed all tylenol meds for a 24 hr test. Finally 7+ hours later they figured something out and my internist gave me a pain pump with morphine. Along with a heart monitor (apparently that had nothing to do with meds), I have to be on oxygen because of respiration's. I have 2 IV ports one in each arm because the robaxin (prevents stops myoclous) can be administered with morphine or much else apparently. Luckily it is only hooked up for an hour 4 times a day. You should seriously see the wires and tubes that are every where....and as we all know I'm not exactly graceful. Next thing you know I'm going to have some incident involving getting tangled, trying to walk
So despite all that I got a good dose in me, ate lunch and was OUT for a good nap and Brett who had been up just as long went for an almost 3 mile walk.
I am writing this in the wee hours when I should be sleeping. ....
Sunday, August 21, 2011
What day is it????
Waking up this morning I realize two things I have been in the hospital far too long -secondly I had no clue what day it is. I have since clarified that it is Sunday - just turning on the TV and seeing all the political bantering. I have now been in the hospital 12 years....oh wait that is 12 days. It just feels like the previous. They have finally stopped bouncing me around between rooms (must mean I'm behaving finally and not being evicted).
I tried to spice things up for us all yesterday - I had a few minutes of chest pain and shortness of breath yesterday. This led to the excitement of a few extra tests and the heart monitor back on my chest. Good news for all I'm sitting here typing (maybe not such a great thing in the eyes of some - if so stop reading) There were no blood clots in my legs, no pulmonary embolism. They filled me with some nuclear isotopes and scanned everything. A leg ultrasound on my legs, and my permanently attached heart monitor. Cardiologist said they picked up some tachycardia at some point but so far everything is healthy.
I am processing how difficult my situation is not only on me which is obvious but those that are close to me. One person that I love so very dearly is very much struggling with this. The way this person sees situations like this as "drama" and has needed to simply keep their distance. Its so hard to have them so far away.
I tried to spice things up for us all yesterday - I had a few minutes of chest pain and shortness of breath yesterday. This led to the excitement of a few extra tests and the heart monitor back on my chest. Good news for all I'm sitting here typing (maybe not such a great thing in the eyes of some - if so stop reading) There were no blood clots in my legs, no pulmonary embolism. They filled me with some nuclear isotopes and scanned everything. A leg ultrasound on my legs, and my permanently attached heart monitor. Cardiologist said they picked up some tachycardia at some point but so far everything is healthy.
I am processing how difficult my situation is not only on me which is obvious but those that are close to me. One person that I love so very dearly is very much struggling with this. The way this person sees situations like this as "drama" and has needed to simply keep their distance. Its so hard to have them so far away.
Saturday, August 20, 2011
Teddy Grahams and Vanilla Pudding
Before anything else.- The ability to comment has been fixed. Anyone is able. I would like it if you registered so I know who is following or leaves the messages. While this is my open and honest means of expression I would rather you be able to share anonymously than not at all.
T\oday is going to be a good day. My nurse is named Noel - he seems absolutely fabulous. Just his spirit and excitement brought a smile to my face immediately - AND we share a name. For those that don't know my middle name is Noel. Only difference Mom - his birthday is at Christmas NOT June. Hehehe. We already had a good laugh about how many Christmas decorations we have with "Noel" on them. Something we both have grown to love as we got older.
As I tried to warn earlier - I intend to write very honest experiences and feelings. I know that it may be hard for readers and I can't apologize but I can say thank you for reading and showing an interest in my experiences both good and bad.
Before I started blogging this morning I lay in bed (feeling like I literally was in a serious car accident last night). Last night I had the hardest myoclonus episode yet. Physically it was thrashing, exhausting, terrifying at times. As I experienced it this time, I prayed why do I have to be awake and feel the pain, the fear and know all the terrible things happening to my body. Up until I believe yesterday I had never had head involvement in these episodes. Let me start by saying i had four episodes yesterday. They lasted anywhere from 40 to 90 minutes (I believe). The first one started at 4 a.m., the last one at 11 p.m.
The last two episodes were very emotional for me. I try so hard to be strong as I experience them. I believe giving in to emotions doesn't do any good. I broke down, tears flowed and I cried like a baby. Brett does a wonderful job reminding me that I need to breath. take nice deep breaths. Try to calm down. The tears flow and the crying feels like it rises from somewhere deep inside. A place of fear, frustration, pain and exhaustion. At times I am angry - angry because the pharmacy delayed filling the prescription on time, angry because the nurse doesn't seem to see any rush in administering my meds on time so that this doesn't continue to happen. Even anger with the doctor for deciding we should try to Robaxin pill vs IV. We did it once it didn't work, why on earth are we doing this again. I'm the one that suffers - not him. As I shook and jerked and kicked and hit - and did more head banging than any sober person would do at even the best concert - I'm even questioning how much alcohol (or other) it would take for a person to intentionally shake their head in such a violent means on purpose. My back is arching and twisting at the same time. When such unnatural movements happen my mind is almost yelling at my body - STOP YOU DON'T BEND THAT WAY. My back doesn't listen and like a rebellious teenager it turns and twists even further.my legs kicking sometimes slowly then another instant faster than I believe my body is capable of moving. My left ankle twists with such intention. I scream in pain. It seems each time it does this it twists further inward. Brett helps remind me again and again - relax deep breaths.
As the episode comes to an end I'm scared the left side of my face is almost numb. It feels so weird. One of the neurologists favorite things to do is have me smile big - I hadn't quite understood until last night. when I tried to do it, I felt like that part of my cheek was droopy, it didn't feel like my cheek muscles were tight. I found myself fighting the muscles to force the into the proper formation. I got it there but it scared me. More tears flowed. my body feeling like a rag doll. so often during the episodes - especially this one. It wasn't the longest by any means but it was the worst in terms of strength. My body kept fighting and insisting on the violence despite the feeling that the muscles were jello.
This morning the pharmacy was lax in getting my Robaxin (a strong muscle relaxer that if given by IV every six hours. This is the first Iv dose since the doctor agreed to stop trying to utilize the oral option. I got IV ativan in hopes of relaxing some before the Robaxin arrived. The nurse was wonderful pushing through with the pharmacy, taking care of her other three patients and of course me.
Before I started blogging this morning I reflected on my body. I feel like I've e been hit by a car or some other accident. I rolled over and smiled. After the episodes the nurse had brought my after "exercise" snack. i was so exhausted and weak. I had a small vanilla pudding a teddy grahams. I don't remember the last time I ate teddy grahams before this.
Its nearly impossible for me to go through this experience without thinking of Miah almost every time. I worry about how the kids are handling it. It was so good to see Alex and Sean last night. Brittany decided to stay home. I cried quietly for them. it hurts me that they have to see me like this. I hate the amount of loss they have experienced in their young years. I can't begin to imagine the fear and emotions they are feeling just walking into a hospital room - much less to see your mom sick and having been here 11 days;
I'm going to wrap up for now. I'm hopeful that breakfast will be here soon. I am ravenous after having all those episodes yesterday. I am looking forward to a big breakfast. I am praying that today is less active. We have also requested a sit down meeting with my lead physician in hopes of gaining a better understanding of where I'm at now and what the plan is.Also hoping to get better grasp of who all my doctors are an what they are contributing. We have random doctors from specialities I never knew existed. Lets hope breakfast is here soon. I'm starving.
T\oday is going to be a good day. My nurse is named Noel - he seems absolutely fabulous. Just his spirit and excitement brought a smile to my face immediately - AND we share a name. For those that don't know my middle name is Noel. Only difference Mom - his birthday is at Christmas NOT June. Hehehe. We already had a good laugh about how many Christmas decorations we have with "Noel" on them. Something we both have grown to love as we got older.
As I tried to warn earlier - I intend to write very honest experiences and feelings. I know that it may be hard for readers and I can't apologize but I can say thank you for reading and showing an interest in my experiences both good and bad.
Before I started blogging this morning I lay in bed (feeling like I literally was in a serious car accident last night). Last night I had the hardest myoclonus episode yet. Physically it was thrashing, exhausting, terrifying at times. As I experienced it this time, I prayed why do I have to be awake and feel the pain, the fear and know all the terrible things happening to my body. Up until I believe yesterday I had never had head involvement in these episodes. Let me start by saying i had four episodes yesterday. They lasted anywhere from 40 to 90 minutes (I believe). The first one started at 4 a.m., the last one at 11 p.m.
The last two episodes were very emotional for me. I try so hard to be strong as I experience them. I believe giving in to emotions doesn't do any good. I broke down, tears flowed and I cried like a baby. Brett does a wonderful job reminding me that I need to breath. take nice deep breaths. Try to calm down. The tears flow and the crying feels like it rises from somewhere deep inside. A place of fear, frustration, pain and exhaustion. At times I am angry - angry because the pharmacy delayed filling the prescription on time, angry because the nurse doesn't seem to see any rush in administering my meds on time so that this doesn't continue to happen. Even anger with the doctor for deciding we should try to Robaxin pill vs IV. We did it once it didn't work, why on earth are we doing this again. I'm the one that suffers - not him. As I shook and jerked and kicked and hit - and did more head banging than any sober person would do at even the best concert - I'm even questioning how much alcohol (or other) it would take for a person to intentionally shake their head in such a violent means on purpose. My back is arching and twisting at the same time. When such unnatural movements happen my mind is almost yelling at my body - STOP YOU DON'T BEND THAT WAY. My back doesn't listen and like a rebellious teenager it turns and twists even further.my legs kicking sometimes slowly then another instant faster than I believe my body is capable of moving. My left ankle twists with such intention. I scream in pain. It seems each time it does this it twists further inward. Brett helps remind me again and again - relax deep breaths.
As the episode comes to an end I'm scared the left side of my face is almost numb. It feels so weird. One of the neurologists favorite things to do is have me smile big - I hadn't quite understood until last night. when I tried to do it, I felt like that part of my cheek was droopy, it didn't feel like my cheek muscles were tight. I found myself fighting the muscles to force the into the proper formation. I got it there but it scared me. More tears flowed. my body feeling like a rag doll. so often during the episodes - especially this one. It wasn't the longest by any means but it was the worst in terms of strength. My body kept fighting and insisting on the violence despite the feeling that the muscles were jello.
This morning the pharmacy was lax in getting my Robaxin (a strong muscle relaxer that if given by IV every six hours. This is the first Iv dose since the doctor agreed to stop trying to utilize the oral option. I got IV ativan in hopes of relaxing some before the Robaxin arrived. The nurse was wonderful pushing through with the pharmacy, taking care of her other three patients and of course me.
Before I started blogging this morning I reflected on my body. I feel like I've e been hit by a car or some other accident. I rolled over and smiled. After the episodes the nurse had brought my after "exercise" snack. i was so exhausted and weak. I had a small vanilla pudding a teddy grahams. I don't remember the last time I ate teddy grahams before this.
Its nearly impossible for me to go through this experience without thinking of Miah almost every time. I worry about how the kids are handling it. It was so good to see Alex and Sean last night. Brittany decided to stay home. I cried quietly for them. it hurts me that they have to see me like this. I hate the amount of loss they have experienced in their young years. I can't begin to imagine the fear and emotions they are feeling just walking into a hospital room - much less to see your mom sick and having been here 11 days;
I'm going to wrap up for now. I'm hopeful that breakfast will be here soon. I am ravenous after having all those episodes yesterday. I am looking forward to a big breakfast. I am praying that today is less active. We have also requested a sit down meeting with my lead physician in hopes of gaining a better understanding of where I'm at now and what the plan is.Also hoping to get better grasp of who all my doctors are an what they are contributing. We have random doctors from specialities I never knew existed. Lets hope breakfast is here soon. I'm starving.
Friday, August 19, 2011
This is an example of a tonic hip, knee and ankle during and fter an episode. This particular time it didn't respond until over 3 hours after the episode ended. 
View from the second picture window in my room. Absolutely beautiful. I am so lucky to have a penthouse hospital room - the dining table sits right next to this window. 
View just before sunset 
My personal favorite is looking out my window next to my bed and seeing the star of David. It is a wonderful reminder of who has control. It has helped me relinquinsh control many times.
Tonight 19 Aug 11
Well I posted a pic tonight of me wearing my 48 hour EEG. Our little joke is I looked like Joe Dirt. We try to find as much humor in our nightmare as possible. I'm had three myoclonous episodes through out today. These aren't seizures but they are rough on the body. I try to be positive and accept the discomfort and downright pain through each one. God is good and provides me with the strength. Last night my lead physician told me I need to walk to halls 3 times each day, in addition to around the room I'm in. I woke up with an episode at 4 a.m. and after receiving ativan and morphine it was gone just in time for the MRI/MRA. I understand from a very short visit from my doctor that they came back clean. Which is good news.
I took a walk later this afternoon and similar to earlier in the day - I ended up with another episode. It was at this point in the day I lost my strength of good attitude. The pain was just more than I could handle. For the first time here in the blog I admit I broke down and cried my eyes out the entire time. I was hurting, my body felt like it couldn't handle anything more. I am so blessed to have Brett by my side remiding me to breathe. I was hard, but I lasted the 40 minutes and made it through.
My medication regimen to treat the myoclonus has been Robaxin, Klonopin, Benedryl , and as a last resort 1 mg ativan via IV For pain a combination as needed of percocet, oxycotin, tyelonol and last resort IV Morphine. The doctor's have played with the use of Robaxin administered via IV or per oral route. I immediately found that it does not seem to be working for me orally. The past two days they had gone back to insisting on per oral on the Robaxin. In doing so I have averaged 3-4 monocluous episodes - prevention meds. Little or no benefit. Tonight after my breakdown nd complete and utter exhaustion due to my episode this afternoon, I pushed my point with my lead doctor that IV Robaxin in my only option. I thrash so strongly and become so tonic at other times, I was very concered that I was beginning to injure myself, and risking more serious injury. Luckily, I learned from the nurse that I had been successful. I am expecting the next dose soon.
In response to this same issue I got upset and have gone through some various rounds. We have comprised a list of at least 9 specialists (not counting their residents, fellows, students, nurse practitioners). Keeping track of their individual plans, tests and orders has began to feel impossible. Often times it seems they haven't talked or shared plans themselves. With this sort of situation, and so many changes every day. I am praying we can meet with Dr I and start understanding better what is happening and what will. Hopefully tomorrow will provide something in this direction. I am happy for feedback from those who have been in this position.
On an amazing note - Alex and Sean were here tonight. We all had dinner together and of COURSE Pink Berry. My dad was kind enough to go pick them up at home and bring them down for the weekend. I have been so stressed out how on earth would we get Sean ready to start high school. Alex has books but getting the resources to them and finding the clothing they need to start the next steps in life. Brittany was hoping to come however she wasn't feeling well. Please pray she is feeling back to herself in no time.
Here is some information on the diagnosis. Couple different sites that I find very helpful. http://en.wikipedia.org/wiki/Myoclonus or http://http//www.mayoclinic.com/health/myoclonus/DS00754.
The doctor told me that 1 in every 100,000 people are diagnosed with this disorder. As I said we are putting a lot of research of into it and what is causing it. It appears it may be genetic. One other find that my Thoracic MRI uncovered early in the week was thoracic recessed lateral stenosis at the T-10 and T-11. I had an epidural put in this space Tuesday. It was a nightmare with the myolonus. This issue has been diagnosed as genetic. We believe it may be connected to the on goinm pelvic pain, however. the episodes irritated the area and left me feeling like I was kicking in the back by a horse.
For those interested in seeing what one of the episodes looks like. We have documented many of them via video in order to share with the neurological staff. If you go to http://www.smugmug.com/ search for american metrics - Go to the video gallery where the password is ametrics.
The video is disturbing (at least for me) so I'm warning you. I keep questioning sharing this information. I feel like being honest and maybe at time joking about it will make my journey somewhat easier. It is terrifying don't get me wrong. I cry, I laugh, I wonder why me?? Epilepsy type things for some reason have always been my biggest fear. After doing hours of medical history I realize I have had it my entire life. I have had twitching, jerking, even a few seizures as far back as 13 years ago. I was scared and ignored them. Then when I went to the doctor I was told after a few tests - I was just having Anxiety and I should probably just take zoloft and "deal with it". Now I have doctors asking why am I just now dealing with it. The reason was fear one and two because when I tried I was denied as an overzealous paranoid woman.
Well, I'm about out for the night. I am ready for my night meds and sleep. My body in it's entirety hurts worse than any workout I have ever done. Please ask questions, let me know what you're wondering or thinking. My biggest advice after this is stick up for yourself. When you know something is going on - follow up. It is better to be safe than sorry.
Tonight I want to say a special thank you to Correen and Breanna for bringing us a bunch of stuff from home this week (we had nothing considering we can for a doctors appointment). My dad has spent hours here afterwork and even has taken time off to spend time with me and giving Brett time to get away. Ashley the same thing - we had some wonderful time together. Terry Robbs thanks for offering to visit. I'm sorry I wasn't up to it. Jenn, Terry, Dennis your words keep me going some moments. You have no idea! I have the best most supportive loved ones. Oh and I almost forgot someone VERY important - Joe you continue to do more for us than I can even begin to list tonight.
Please pray for my strength and pray the doctors find an answer. I would love to have comments, and see who is following. If you have questions about what is happening, what we need, anything this is really the best place. I have noticed thanks to the meds. I forget about text messages. This will keep it in one place so I don't loose something.
I know this is helping me, I hope someone appreciates it. Love to everyone!!!
I took a walk later this afternoon and similar to earlier in the day - I ended up with another episode. It was at this point in the day I lost my strength of good attitude. The pain was just more than I could handle. For the first time here in the blog I admit I broke down and cried my eyes out the entire time. I was hurting, my body felt like it couldn't handle anything more. I am so blessed to have Brett by my side remiding me to breathe. I was hard, but I lasted the 40 minutes and made it through.
My medication regimen to treat the myoclonus has been Robaxin, Klonopin, Benedryl , and as a last resort 1 mg ativan via IV For pain a combination as needed of percocet, oxycotin, tyelonol and last resort IV Morphine. The doctor's have played with the use of Robaxin administered via IV or per oral route. I immediately found that it does not seem to be working for me orally. The past two days they had gone back to insisting on per oral on the Robaxin. In doing so I have averaged 3-4 monocluous episodes - prevention meds. Little or no benefit. Tonight after my breakdown nd complete and utter exhaustion due to my episode this afternoon, I pushed my point with my lead doctor that IV Robaxin in my only option. I thrash so strongly and become so tonic at other times, I was very concered that I was beginning to injure myself, and risking more serious injury. Luckily, I learned from the nurse that I had been successful. I am expecting the next dose soon.
In response to this same issue I got upset and have gone through some various rounds. We have comprised a list of at least 9 specialists (not counting their residents, fellows, students, nurse practitioners). Keeping track of their individual plans, tests and orders has began to feel impossible. Often times it seems they haven't talked or shared plans themselves. With this sort of situation, and so many changes every day. I am praying we can meet with Dr I and start understanding better what is happening and what will. Hopefully tomorrow will provide something in this direction. I am happy for feedback from those who have been in this position.
On an amazing note - Alex and Sean were here tonight. We all had dinner together and of COURSE Pink Berry. My dad was kind enough to go pick them up at home and bring them down for the weekend. I have been so stressed out how on earth would we get Sean ready to start high school. Alex has books but getting the resources to them and finding the clothing they need to start the next steps in life. Brittany was hoping to come however she wasn't feeling well. Please pray she is feeling back to herself in no time.
Here is some information on the diagnosis. Couple different sites that I find very helpful. http://en.wikipedia.org/wiki/Myoclonus or http://http//www.mayoclinic.com/health/myoclonus/DS00754.
The doctor told me that 1 in every 100,000 people are diagnosed with this disorder. As I said we are putting a lot of research of into it and what is causing it. It appears it may be genetic. One other find that my Thoracic MRI uncovered early in the week was thoracic recessed lateral stenosis at the T-10 and T-11. I had an epidural put in this space Tuesday. It was a nightmare with the myolonus. This issue has been diagnosed as genetic. We believe it may be connected to the on goinm pelvic pain, however. the episodes irritated the area and left me feeling like I was kicking in the back by a horse.
For those interested in seeing what one of the episodes looks like. We have documented many of them via video in order to share with the neurological staff. If you go to http://www.smugmug.com/ search for american metrics - Go to the video gallery where the password is ametrics.
The video is disturbing (at least for me) so I'm warning you. I keep questioning sharing this information. I feel like being honest and maybe at time joking about it will make my journey somewhat easier. It is terrifying don't get me wrong. I cry, I laugh, I wonder why me?? Epilepsy type things for some reason have always been my biggest fear. After doing hours of medical history I realize I have had it my entire life. I have had twitching, jerking, even a few seizures as far back as 13 years ago. I was scared and ignored them. Then when I went to the doctor I was told after a few tests - I was just having Anxiety and I should probably just take zoloft and "deal with it". Now I have doctors asking why am I just now dealing with it. The reason was fear one and two because when I tried I was denied as an overzealous paranoid woman.
Well, I'm about out for the night. I am ready for my night meds and sleep. My body in it's entirety hurts worse than any workout I have ever done. Please ask questions, let me know what you're wondering or thinking. My biggest advice after this is stick up for yourself. When you know something is going on - follow up. It is better to be safe than sorry.
Tonight I want to say a special thank you to Correen and Breanna for bringing us a bunch of stuff from home this week (we had nothing considering we can for a doctors appointment). My dad has spent hours here afterwork and even has taken time off to spend time with me and giving Brett time to get away. Ashley the same thing - we had some wonderful time together. Terry Robbs thanks for offering to visit. I'm sorry I wasn't up to it. Jenn, Terry, Dennis your words keep me going some moments. You have no idea! I have the best most supportive loved ones. Oh and I almost forgot someone VERY important - Joe you continue to do more for us than I can even begin to list tonight.
Please pray for my strength and pray the doctors find an answer. I would love to have comments, and see who is following. If you have questions about what is happening, what we need, anything this is really the best place. I have noticed thanks to the meds. I forget about text messages. This will keep it in one place so I don't loose something.
I know this is helping me, I hope someone appreciates it. Love to everyone!!!
MRIs and Cheese Blintzes
MRI is done. This was the third since I was admitted here on May 10th. Its funny to me that the transport tech comes to pick me up and off we go. When I get down its like old friends. Familiar faces providing a smile and a re-assuring feeling that everything is somehow OK. The transport tech that brought me up has taken care of me a few times.
I dont believe I have explained my room - only in Beverly Hills.. I have a room that in size rivals that of a Residence Inn. When you enter yhe flooring to your right is a low pile multi-tone brown. Sitting on it is a beautiful brown/tan couch with carved birch arms. The setting is complimented by a matching end table as well as my dining room table where Brett and I try to share every meal.
To the left of the door and the entrance way is oak wood floor. further right is the nursing computer (cow they call it), an IV machine (luckily I'm not attached to right now. My stand hospital bed, tray and a fairly comfortable chair for Brett. Hanging high on the wall is a large flat screen TV. No there is no HBO (which translates to no True Blood) - yes I am having horrible withdrawals. They have an amazing listing of newer movies to select from. I have also found a way to enjoy a special channel that is just old old classics - complete with the original commercials.
I enjoyed breakfast sitting at the dining room table looking out over an overcast city. Cheese blintzs, bacon, peaches and fresh coffee. Brett came back from the laundromat and we went for our walk around the unit. The internist told me last night its 3 walks a day or those damn bubble leg pumps to avoid blood clots.
The walk was peaceful enough initially. The beauty of this hospital is the art on the walls. Unfortunately by the time I got back my back had been spasming as if I had been trying some awful white girl dance move. I realized as I walked that I am beyond blessed to have my dear husband who is not just physically strong enough to hold me up during this, but more importantly emotionally, and with such witty humor when I need it the most.
I have so far been officially diagnosed with myoclonus. Please feel free to google it. Just saying it much less writing it is emotional. It has a name, it has a scary name. My biggest irrational fear my entire life has been epilepsy. As you read you will find this isn't epilepsy and my episodes aren't "seizures" however in the physical reality - what I find myself living is no different than that for the moment. I am experiencing about 3 episodes a day. I have two choices cry through each one, allowing the pain and fear to control my experience. The other is that I laugh with Brett, laugh at the way my butt wiggles like the best stripper ever, laugh that I'm trying to look like a mermaid, shock that my body, my feet, hips turn in such an unnatural way. Surprise and exhaustion when my hip to my toe is tonic in the worst position ever - asthetically and painfully.
I shudder at how this initial diagnosis will affect the rest of my life. My desires to be a bit crazy, ride the wave of life and enjoy everything. My heart and soul knows that meaning is changing, simple things like driving myself very well will not happen for sometime. I wonder how others will feel when am episode starts. I have seen nurses and specialists in neurology get scared, show shock and fascination.
Then I remember this is just almost a symptom.What is the brain MRI going to show? the MRA (I learned this morning this is an MRI that reads the blood flow specifically.) The prefer to use IV contrast for a better reading but Im severely allergic.
I also am waiting on more blood work results, the results of a 5 HIAA 24 hr urine. the first of this test came back dangerously high, however it has the possibility of a false positive, so we re-did it and they administered the followup diagnostic blood work which takes about 8 days, we figure we'll get them back at the same time.
I have been away from home, my kids since May 9. I worry about them so much. How will they handle the diagnosis I already have? What about the future? They each deal with so much since I became sick. I wirry every moment of everyday anout how this effects them. At night I dream of being a "normal" mommy. All three have been my whole world for my entire adult life. I was blessed with healthy parents - how does this affect them. I ask God why they must be hurt.
Tonight my dad will bring them down for me to see. I havent heard if they are all coming for the weekend, I can't wait to see all three. At the same time, I don't want them to see me like this. They've seen loved ones in this place and its turned out bad. it brings up emotions and fear for us all.
I apologize for the length. You guys know I can write and ramble.
Early Friday morning
Ok I guess its time to catch everyone up since I got admitted to Cedars. August 2 I had injections into my L5-S1 the left facet joint, as well as one into my left sacroiliac joint. They had been done because the latest round of tests suggested that the pelvic pain was due to a damaged sacroiliac joint. the injections were basically steroids and a numbing agent. I was told that it should help almost immediately. I felt like a horse had kicked at the injection site. Once home I slept the better portion of the next few days.
Friday the 5th of August I woke up with slightly more energy. I went and had coffee with Brett and Joe. I noticed that morning i just didn't feel right. i ignored it - marked it up to the injections. By noon my heart felt like it was racing out of my chest. I took my pulse to find it was was 144 (bpm). I didn't say much, ate some extra lunch hoping that would help. didn't, so contacted my doctor whom if he could have yelled to get to the emergency room, locally. It was insane. Within 10 mins of the email - my right arm began to tremor/jerk. the local urgent care attempted to treat the tachycardia I was wheeled over to the ER.
I must say at this point we were joking about the arm. They treated the symptoms and I was released. We repeated this process on Saturday - the jerking/uncontrolled muscle jerks weren't explainable - lots of guessing. Monday repeat tachycardia and same old shaking but increasing in body area affected.
Well I need to fast forward for now. I have been diagnosed with myoclonus. I had to stop writing quite a bit to get the medications to stop it. My back and neck were affected this time. I have an MRI of my brain here in the next few bits. Time to close my eyes and rest. Despite the morphine given 8 am hurting. Out for now.
Thursday, August 18, 2011
What lead to this.....
Start out with little background here. Words that I have had to repeat to family, friends, nurses, doctors and coworkers a few million times. Here it goes for those reading the blog. On September 30, 2009 I was out running. An sudden stabbing pain in my left lower pelvic area nearly dropped me to the ground; I called my dear husband for a ride; Went home took a vicoden I had from a previous surgery and went to bed figured I was ovulating - not very gracefully!
Since that day I have made uncountable visits to our local Emergency Room - a small town community hospital. i quickly began the process of hunting down an OB/Gyn for a consultation. I found one in Los Angeles/Beverly Hills and was seen October 24. Yes that was an "urgent' visit. Since then I have had a laproscopic surgery in which they removed severe adhesion's in my abdominal wall. I could post those beautiful pics on here come to think of it, when that didn't work we opted for parietal hysterectomy. You got it no change - had a few exciting months of loosing control of my urine. Lets point out here, am 34 at this point. An MRI confirmed the diagnosis of a inguinal nerve, removed that and some more adhesion's. Few months passed and yep you got it, same pain, same spot. MRI yet again came to our service and identified a nerouma had developed. Removed this.
Now the real "fun" starts as if I hadn't enjoyed the last 11 days following surgery I randomly fall in the parking lot of the grocery store. No reason for the fall whatsoever. Incision ruptured open based on the fact that I fell flat on my belly. The amount of fluid that exploded out of my body was truly disgusting. Now lets get to know me a bit - I think I'm quite the tough ass. Every logical human would have and I should have stayed laying on the driveway until an ambulance comes..
OK not me I flew up jumped in the driver seat, applied pressure with my knee up and drove my self home, got my husband and he took me to the ER. I spent the next two months packing the wound with gauze and salt water
You would think this would be it....how could this possibly get any more interesting!!! You just wait. I have missed so many hilarious stories and unbelievable behaviors by myself, friends and family not to mention doctors and their staff.
I will pick up next probably tomorrow. Start on my path since I started experiencing odd, terrible, painful seizures and tachycardia on 8/5/11. I'm hoping this blog will help me through my emotions, help all those concerned understand what I am experiencing physically and emotionally. I will say now I am going to be honest in these feelings. I need to be honest with myself but also honest with those reading it. Emotions are a big part of anything like this. Everyone helping me and taking care of me I hope everyone understands the purpose. I will not use names simply situations. Some days will be joyous, others down right terrible. I may take my fear and concern out as anger towaard other people. The emotional road and the physical ones so far have been rough and delightful.
I request one think if you opt to read this blog - remember these are my feelings dealing with my experience. I will be bluntly obvious. If I offend you I am sorry. They are simply meant to give you a picture into my world and my experiences. Whatever they may be. So if you are game - and please feel free to join. I do request for my health and benefit that all feedback is positive. I have enough negative in my life living this. I don't want more. I am not necessarily looking for opinions - i.e. you should have felt this way or thought that way."
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