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!!!
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