Blog entries from lnester7

lnester7 has a total of 116 entries.

  1. lnester7
    I am writing as a form of journaling a guess. Hope can be a dengourous thing! I think I can hope to get well now ( I have random brain feelings and my POTs and colitis are still there). I am thinking of quitting all pills. Just to give this a real shot, make sure nothing is interfering. I always thought that when this time comes ( cure) I would not be able to solve all the things I have...
    lnester7, Dec 9, 2017 at 9:48 AM
  2. lnester7
    i thoguht if I get cured I would..... and is funny that after a few days Without my relentless PEM the one thing I decided to do first was........... take a very hot shower!!!!! I have the hardest weeks ever. Pressure at work, had to travel 3 times, had to move office and to put the nail on the coffin, I had to move houses. The move was brutal. The first few days I was afraid I would crash....
    lnester7, Dec 8, 2017 at 6:15 PM
  3. lnester7
    I am on a bizzare up and down. I ALWAYS get worst on the fall for all past 10 years, and this fall was not the exception but the pattern is different, I get most "good" days than bad. I still have some symptoms that are bothersome, but what I see finally improvement on is the non relentless PEM I struggle with. I most have the worst PEM of all CFSers. I am moving also, and it is incredible...
    lnester7, Nov 30, 2017
  4. lnester7
    ok So today I had the most bizarre experience, I had gotten 2 shots so far of peptides and I decided to try something new. I was not planning to talk about it at all until I was on it for a long time. But I use this blog as a documentation source since I have the most terrible memory. I am also doing MIC shots. So who knows if it is the combo or one or the other, also my body always respond...
    lnester7, Oct 17, 2017
  5. lnester7
    In the middle of the political turmoil here at PR, which I still do not understand no matter how much I read, I have great news! I can finally sleep without meds. I have tried this for years. I started feeling like a truck hit me when I woke up and my brain felt as if somebody spend the night bitting me with a baseball bat. I felt like not pain per say but like tenderness. I was given...
    lnester7, Oct 10, 2017
  6. lnester7
    So I was talking to mom, and I said "I am tired today" and she said something, which I replied. "Unfortunately CFS does not kill you that easy, so stop worrying every time I crash, you cannot get this worked up about it" She said but you are being so negative, you have to fight, do not give up...... blah blah I said mom " I am not being negative, or giving up, I am telling you that as a...
    lnester7, Aug 29, 2017
  7. lnester7
    So I have been ok for a few months. The only issue I had was bones popping out of place WAY to often, Since then I decided to lower the midodrine since I was doing better and that did the trick. But I have not have a crash or the regular CFS fatigue for about a few months. Then today I felt it. That tiredness and then the wave of this substance that invades my brain and wipes me out...
    lnester7, Jun 15, 2017
  8. lnester7
    This is amazing, I always get "normal" energy when I get a cold, or several viral (Zica also) and it is a constant for me. This week I felt fluish and just wiped out, first day I was very weird out because when I feel a cold I am supposed to feel amazing (I am the only person in the world that celebrates a cold, the worst the better). Second day, I say something is wrong, I am going to the...
    lnester7, Feb 23, 2017
  9. 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
  10. 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
  11. 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
  12. 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
  13. 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
  14. 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
  15. 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