I just wanted to explain myself in no specific detail. The past week and a half I’ve been in the hospital. I should be out soon. I’ll go into it more when I have the energy to write it up. It has been quite an adventure. I hope you are all doing well and have fun things planned for the weekend!
Happy tummy days =)
At 2:00am our clocks will reset to 1:00am tonight, November 5th, 2011. One extra hour of sleep! I feel like that is all I have been doing lately. No, I’m not depressed. No, I don’t need a new hobby. No, I don’t need to get out more. I just straight up need more sleep. Even on 15 hours of (sadly interrupted for unknown reasons – sleep study being done this coming week) sleep, I could easily take a nap for 3 hours. I really hold back on the nap thing because it would put me off an already derailed schedule. Hopefully my sleep study will turn up some helpful answers and I won’t need to use so much medication to get to sleep (Ativan, Phenergan, Lunesta). A new thing that has been happening is that I talk in my sleep to the point of waking myself up. My husband says that I speak perfectly clearly and quite loud. I guess I’m his interruption to sleep =( Nothing I can do! He believes it is because of the new pain medication I started, my pain doctor prescribed, Nucynta. Don’t know if we will ever know for sure what is causing it, but I hope to stop it.
I had a cardiology appointment last week. My doctor is investigating the possibility of POTS and MITO as the main problem causing all the seemingly unrelated diseases/symptoms. My cardiologist put me on what they call, Ace of Hearts. It is a heart monitor with two leads that record your heart rhythms in 10 second sections, when you click the button. It can only hold 10 recordings and so when I need it cleared, I call up a number and place the phone on the recorder and it transmits the data to my doctor’s computer. I am to wear this thing for two weeks. Lucky for me my time is almost up. On the 8th, I get to go and return it and have my results analysed. During that same appointment I’m getting a TTE or transthoracic echocardiogram. A tilt table test will also be discussed and possibly performed.
I also finally got in to see my new neurologist who specializes in migraines, Dr. Aurora. She was not too happy having Ellie in the appointment with me but that’s just too darn bad. I have been waiting since March to see her, I sure wasn’t rescheduling. She diagnosed chronic migraine. Um..duh. It is good to atleast have it written down officially. She wants to do botox injections next week to see if that reduces the frequency and intensity of my migraines (I have at least 5 a week – not too enjoyable). I’ve heard from others who had the treatment, and they say that it works. I hope it does for me. I’ve had migraines for the greater portion of my life.
Last update here is from my pain doctor. I like him. He’s coming around. We went through all the nerve blocks (trigger-point injections, TAP block, celiac plexus block) so now we are seriously discussing the spinal cord neurostimulator I mentioned before. It is the same unit I already have for GP and my stomach except the leads will go into my spinal cord instead. Yes, I’ll have two of these guys in my tiny abdomen. That just means more fun at the airports…NOT. I went through the required therapy appointment my insurance requires before they will agree to the temporary use of this device. Now I just need to get it scheduled. I see my doctor on Monday, we will know more then! Getting the spinal cord neurostimulator will be of much help as I won’t require nearly as many pain medications that I do now. If it works that is. I’d much rather have the stimulator over my last option, the pain pump because I’d still be having narcotics going through my body, just less of them.
Anyway – time to wrap this up as I have some things to do to get ready for bed. Yes, it is a whole routine that takes an hour or two because 1. it involves hooking up to TPN and 2. breaks are needed because I just don’t have the energy =( We stopped by the fire station that responded to Victor’s 911 call during my seizure to drop off some treats.
I added green caramel apple pops to the awareness bands. I thought it was cute. Just doing my part in spreading the awareness of this horrible disease! Happy tummy days to everyone!
Patient stories is up and so are the videos. Feel free to check them out and if you want to be a part of it, send me your picture and story or link to your video and I’ll include it! Thanks to all who have shared already. Yay for awareness!
In remembrance of the two close friends I have lost this week. They are super important to me. Makes this disease and all others more real. How many more people must die before they take it more seriously?
