Blog entries from lnester7

lnester7 has a total of 123 entries.

  1. lnester7
    This is more a note to self kind of blog so I can track my progress. So I do well overall CFS wise, I struggle more w POTS I would say. But my biggest thing is PEM. I really need to get a handle on this thing. So I decided to concentrate on the energy production and PEM issues (I have the immune under control) and see if I can progress some more. So I started to try BCAA and...
    lnester7, Jan 1, 2017
  2. lnester7
    I have been thinking about my year and where I am at with CFS. I feel I have gotten out of the miserable state I was constantly in, that place where everything you do feels like torture, where you question how you can make it for another minute. I mean I had suffer, the only word I can use to describe my CFS existence is pure agony. As I learn to do less, my quality of live improved...
    lnester7, Dec 30, 2016
  3. lnester7
    One of the gifts that CFS has given me, is the inability to hold things with my left hand. If I think, make a conscious movement of the act of grabbing or doing whatever it is I am doing, it is ok, if I automatically grab something and think about something else, I will drop it. I know with all the problems plp have here this is pitty. But to me is darn right down annoying. Do you have...
    lnester7, Dec 19, 2016
  4. lnester7
    I had the best summer I had in 10 years, I traveled and did a lot of the things I put in my bucket list when I am bed ridden. I keep a notebook next to my bed where I "create" hope by doing achievable goals of things I desire to do but can't in the moment, but I can do as I get better: silly things like dance, travel, put makeup and get dressed up.... Fall, Autumn I am in that moment...
    lnester7, Aug 31, 2016
  5. lnester7
    OK So do not ask, I didn't change anything much and I have been with 0 symptoms. I have a clear head and I don't feel pain anywhere or anything bothering me today (probably I will get my period since I get remission on it). But in these past few days, I have been noticing the brain fog finally going away, the pain is under control just a feeling good in general feeling. I have not done...
    lnester7, May 4, 2016
  6. lnester7
    OMGGGGGGGGGGGGGGGGGG I was on Friday and last week with the worst brain fog to history. I was dragging myself and I was called to go into the office. So I did. As I went in I was trying to keep a low profile, I had tones of office work (admin) so my brain fog was not much of a factor, I could do what I needed to do while sleeping if needed be. But THEN IT HAPPENED. as I was walking through a...
    lnester7, Apr 25, 2016
  7. lnester7
    So I had a unscheduled crash, I say was unexpected because was not fall, I did not overdid, I was not sick. I really do not have an answer. I did all that I was supposed to do. But this one hit me hard from an emotional point of view. Not because a particular reason except that JESUS CHRIST how many times do I have to do this again and again and again. I crash (go back from a 7 or 8 to a 3...
    lnester7, Mar 17, 2016
  8. lnester7
    So I have good and bad to report. The bold has the meat of it all. If you ask me what stage you are in CFS, I would say getting better and rehabbing my body. Brain is great: My brain is doing AMAZINNNNNG, the good news. I have so many lucid periods where I feel no CFS at all (the overwhelming amount of symptoms all at once) nor my faithful un-wanted companion for the last 8 years, that...
    lnester7, Dec 1, 2015
  9. lnester7
    :oops::oops::oops::oops::oops::oops: This is for my personal tracking , too much detail and graphic. So might want to stop reading now. So I have IBS like symptoms but never too bad, also spasms to swallow where my throat closes up and hurts like a MOTHER &&&&&& but I read in the POTs forums this is quite normal so I don't think about it much just wait it out and go about my business. So...
    lnester7, Dec 1, 2015
  10. lnester7
    Sooooooo. I can't rate myself if I am better or worse. My disease keeps changing. And is a new challenge every time, By the time I get used to the symptoms they change and I get new challenges and have to figure how to deal. I have a new thing where I start throwing up and cannot stop the gag reflex, I have read about this in the POTs forums so I know is not bizarre for my condition. I had...
    lnester7, Jul 19, 2015
  11. lnester7
    Update, I started having low BP at wake up time for a week, adjusted salt accordingly and BP got better, then on Friday I started passing out left and right. I was scared because in the # 5 or so I hit the floor pretty hard. I called the Cardio and I was asked to go to the ER. I knew I would get better with a IV, but I also knew that I would have to go through the whole ER attitude and end up...
    lnester7, Aug 25, 2014
  12. lnester7
    As the fall approaches, I for the first time experiencing anxiety, I am not one to get anxious so took me a bit to figure it out what I was feeling. Every year about September I have a major crash. And I do not think I can mentally or physically go through another crash. So I decided to plan so I don't feel as powerless this time. I wonder if I am being negative but when it happens every...
    lnester7, Aug 9, 2014
  13. lnester7
    Ok so I was doing great, I went on vacation, saw CFS Doc and increased my LDN to 4.5mg. I was doing great, One day back and I had to travel back and had to push myself beyond any limits known to man. My father had an emergency and ended up in ICU, I don't know how I got strength and how my brain fog miraculously cleared so I could help my mom get back. About day 4 or so of not sleeping,...
    lnester7, Jun 5, 2014
  14. lnester7
    So apparently I am not suppose to pulse the imunovir anymore. Except for the every 6 months break. She told me to use 3 pills a day all week (do not skip weekends anymore) and that is all. Stop every 6 months for one month. Also told me They start by LDN now in protocol instead of imunovir, Also to raise it to 4.5mg because I am way too symptomatic.
    lnester7, May 22, 2014
  15. lnester7
    So I always wonder why when I buy the expensive electrolyte Pedialyte I do so much better, I do not crash and I have better overall performance. When I do my own I always decline. My CFS Dr told me that I need some sugar in there and I forgot the qumical lecture that came with it but I wonder if that is why I can see the massive difference between No sugar Vs with Sugar electrolytes???...
    lnester7, May 22, 2014