#well more or less. i have a blood draw appointment at nearly 9 am the next day but i was able to book it real nearby so its all good !

[transgaysex]

guys tomorrow is my last day of my first year of 3d animation . im sooooo tired but really excited and nervous

[iplaywithstring]

7 years

When I first got sick, I posted about it on facebook. That’s how I know for sure it was 7 years ago. We (myself, my husband, my doctor) thought it was a simple case of anemia, easy enough to fix and the fatigue would go away. I had been sick with a stomach bug in March, and after I recovered I had started going to the gym. Only I couldn’t work out, every time I went I felt worse and was able to do less before I felt like I’d pass out. I started feeling dizzy and exhausted at home. I would space out. I had trouble staying focused. I had trouble carrying the kids. I felt weak, almost like I had the flu, but without any other symptoms - no headache, no fever etc. 

At the time, my daughter was 3.5 and my son was on his way to 2. It was normal for me to feel tired (the girl wasn’t sleeping through the night consistently yet). The fatigue wasn’t a big deal, it was the dizzyness and weakness that drove me crazy. I posted on facebook about it as a way to explain why I was changing plans, why I needed to carpool, why I was having trouble keeping on top of the housework. 

At the time, I was taking antidepressants because I had gone through PPD and wasn’t ready to try going off them yet, just in case. At the time, I was attributing the pelvic pain to SPD. At the time, I really thought all I needed was some iron pills and I’d be fixed. 

Except I wasn’t. My iron went up, but my symptoms got worse. I had other tests, and then more tests, and then more again. I saw a different doctor, and had even more tests. I went on a new antidepressant, then weaned off them completely. There were theories and more tests and still I was sleeping 18 hrs a day and hardly functional when I was awake. 

And then in November, for some reason, things got better. I was given a 4 day run of steroids to see how I reacted, and most of my symptoms went away. The dizzyness and weakness were gone, the fatigue wasn’t nearly as strong, and over time it got better. I got stronger. My doctor told me he wasn’t sure what it was, if it came back it was likely autoimmune, if it didn’t, it must have been viral. 

I went back to the gym, I got a job. I told everyone I was recovered. I had been sick but now I wasn’t. I had gastro issues, I still had pelvic pain, but I was better, I wasn’t sick anymore. I managed the gastro problems through diet, I used light exercise to help deal with the pelvic pain (which I still assumed was from the SPD, even years later). I went on with life. Things were really good for a while. I kept getting blood draws every 6 months or so to check on the anemia - my levels were still generally low even though I was feeling so much better. 

It would come back in spells and I’d blame it on being stressed or not sleeping well, or on eating poorly and dealing with the consequences. The pelvic pain was getting worse and that was my main concern - 3 years ago I was wondering if maybe it was cancer - either my uterus or ovaries - because it would have explained all my symptoms, including the fatigue. I wasn’t working again, and sometimes the pain was so bad I couldn’t function. More doctors appointments, more tests, more waiting, a lot of fighting with my doctor because he wasn’t taking me seriously. I thought the fatigue was a result of the pain and the meds. I thought if I could get the pain under control I’d be well again. 

Last November I finally got my GP to send me to a gynecologist for the pelvic pain. It took her about 10 minutes to diagnose me with endometriosis and discuss treatment options. About 3 weeks into treatment and things were much better. I could walk, sleep, move, function, focus on a conversation and not be distracted by pain. Life was good again. 

But the fatigue is still there, and now there was nothing to blame it on. Now there’s a new doctor, more tests, more waiting. I’m not going out so much in the evenings, I avoid driving, I schedule naps into my day. I adjust my schedule and my expectations and my plans. Just like 7 years ago. I miss things - events, conversations, laughter, moments with friends and family. 

I don’t post on facebook anymore about being sick. A few close friends know, but a lot of people don’t. They only see me on good days, or just after a nap, or for short enough periods of time that I can fake it. Those that do know don’t really get it - they joke about how nice it would be to get a scheduled nap time every day, make helpful comments about this supplement or that exercise. I feel isolated. I feel like I’m failing. My kids are now 10.5 and almost 9. They know on bad days we can’t do some things - friends can’t come over, there can’t be too much noise, that I’m trying to listen and I don’t mean to space out. 

I knit and I spin and I weave because it gives me something to focus on, something to do, something that makes me feel productive without taking too much out of me. It gives me a way to feel like I’m still doing something, but on my worst days I can’t even manage that. I love teaching knitting classes, but it’s getting harder and harder because classes are in the evenings. I love designing, but lately keeping track of numbers and ideas has been really tough. I haven’t even dressed my loom since my last project, because it’s an all day job and I don’t have the energy to spare. 

I don’t post about my illness on facebook anymore, because I don’t want people to think I’m just looking for attention. I know there are lots of people sicker than I am, who have lived with it for longer, who have lost more and suffered more than I have. I don’t talk about it outside of a few people because I don’t want to have to defend myself, because I know I don’t look sick. I don’t share with people because sometimes I really want to be able to pretend I’m normal, even though at the same time i really wish more people understood. The fatigue is isolating, but I’ve also isolated myself. 

This started because of a facebook memory. I wish I could post this there - that I could be honest and open about how things are going, but I can’t. I don’t feel safe making it public, so I’ll just keep it here where people understand, finish my coffee and try to get some chores done before naptime. 

[d1tman-blog]

To those who love to post memes and articles that you should be grateful for life no matter what your circumstances,  I am constantly bewildered by people who take the stance that life is precious and must be maintained at all costs. I submit that there are fates much worse than death, and that life lived in constant pain is not a life that is sustainable.  I contracted Congestive Heart Failure and Atrial Fibrillation 3 years ago, and to be frank, have felt like shit ever since. I have diary excerpts that detail some of this... Unfortunately it is painful and difficult. I assume you want the truth. I am drowning in my own fluids and my organs are failing from lack of blood flow. Breathing is both impossibly difficult/strained and painful. I have been in the hospital 11 times during these past 3 years. I had a pretty good job that I had to quit because I couldn't even take the strain of commuting to work, much less putting in an 8 hour day. A fish out of water, short of breathe all the time. All the organs are progressively shutting down. As the kidneys and liver fail, waste products build up…it's a vicious spiral downward. Many people die of arrythmia, Sudden Cardiac Arrest leading to what is termed Sudden Cardiac Death. SCD is usually from Ventricular Tachycardia leading to, or Ventricular Fibrillation. This can occur fairly early once a diagnosis of CHF/HF is made. Only in the end stages, if one survives long enough… pump failure… everything shuts down. Confusion sets in. People “sleep” progressively longer elevated by pillows, or in a chair.. Gasping for air, lungs crackling. Ugh. So, while you are posting all the feel good messages about how grateful we should all be for our lives, that someone else's is worse...well I don't wish this on anyone. The commplications I have from CHF and AFib now also include renal insufficency and elevated liver enzymes. Death, when it comes, will not be kind. I will suffocate in my own body fluids, and my ICD (implanted cardiac device - defibrillator) will jump start my heart with severe electric shocks which have been likened to being kicked in the chest by a mule, until the battery runs out, about 40 to 50 severe electric shocks...

Diary Excerpts 3 Before you get started on the diary, put something that mildly buzzes next to your ear. Keep it there a few minutes. That is one of the things I have going on 24/7/365, and have had it for 3 years (tinnitus). Now get a belt and tighten it as tight as you can by hand around your head. that is what I feel 24/7/365:  Every single day at least 15 to 20 minutes and often all day long, I feel nauseous.                                                           My life changed drastically and unalterably in early October, 2015. I had gotten that terrible flu that went round Atlanta and did not understand or recognize it's severity until I felt as if I would not draw another breath. I woke up one Sunday morning unable to breathe. I could only breathe sitting straight up. Monday morning I made a doctor appointment with my general practitioner. To make a long story short, I ended up in the hospital in late October  for the 1st of 11 times, sometimes only 5 days per stay, sometiems as long as 9 days (as of 9/29/2018).  I remained in the hospital a week. The flu had developed into pneumonia, and bacteria from the pneumonia damaged my heart even more than the childhood illness did), causing congestive heart failure, atrial fibrillation, and an enlarged heart. Complications from these and from the medicines to combat it have also caused renal insuffiency and elevated liver enzymes. I am now on 9 medications to combat the diseases. I have also had two TIAs (mini strokes) and precancerous polyps were removed from my colon. To those who will be conducting and/or involved in my funeral:                                                     Don't spend any more money than necessary to bury me. If I am near death and someone finds me, don't use heroic measures to save me. Just keep me from as much pain as possible. It is in many respects difficult to contemplate death, but the facts and my present condition preclude a long life, so I will end this journey shortly.  I am comforted by the words attributed to Julius Caeser in Shakespeare's novel: " Cowards die many times before their deaths. The valiant taste of death but once. Of all the wonders that I yet have heard, It seems to me most strange that men should fear death, Seeing that death, a necessary end, Will come when it will come." To be honest, I will be glad when this life of misery and pain is over. I wish it would have been different.  I wish that all I had dreamed and aspired to had become reality. The circumstances have dealt a different path though. I have taken a very different road in life than I ever would have imagined. There is so much to say: The loss of broken and unrealized dreams, expectations unfilled, life cut short. I hope my ramblings on Facebook, Twitter and tumblr, and my encounters on this journey called life have had a positive impact on someone, and that I have made a positive difference in someone's life. I will keep a diary starting on page two of this document. I hope to live a long life, but It doesn't seem like that is to be. I have made some tremendous mistakes in my life, but hope the good I have done outweighs the bad. There isn't a day that goes by when I am not saddened unbearably by losing the love of family.  To everyone, I love you.

Diary: 10/18/2016. I felt pretty fair throughout most of the day, although I haven't slept a lot. I haven't really kept track but I believe I slept about 4 hours from 4:30am until 8:30am, then from about 2:30pm until 4:30pm. I feel like **** now. Weak, heart beating hard... I think nearly every day about not living through this any more...Congestive heart failure, atrial fibrillation, and an enlarged heart - it is a bitch to live with - no energy, no stamina, hurting or in some type of discomfort constantly. 10/19/2016 Another day feeling like total ****. 10/20/2016 I feel a little bit better today - still no energy to speak of. I hurt my back, so am dealing with that in addition to everything else. I stay tired and sleepy nearly all the time... 10/21/2016 Can't sleep. Heart racing, lungs feel tight. 10/22/2016 went back on Proventil inhaler. I think last dose was about 10:45pm 10/21/2016. Have to wait another hour for another dose. can't breathe. Weak stomach tight/bloated. have dry cough. able to sleep 5 hours after 2nd dose of Proventil. Still no energy, no stamina. Throat and mouth dry. slept another 3 hours. Ear infection is back. Ear infection is bothering the hell out of me. Constant ringing. a little sick - don't know if it is from ear infection or other malady - had runny stool several times yesterday. Lost my appetite. Got prescriptions and started back taking them. I hope it gets me feeling better. Kevin's arraignment was Wednesday - charged with felony marijuana possession, misdemeanor marijuana possession, and drug paraphernalia. Finally getting a little hungry. Ate 1/2 Big Mac large meal earlier; Will finish it. Lasix is working me over. 10/23/2016 hard to breathe - can't sleep well. yet am almost overpoweringly sleepy. I finally got a little sleep - about 5 hours. Stomach is cramping, still no energy, no stamina. 10/24/2016 Woke up early - hard to breathe. don't have stamina or energy for ****. Get extremely tired when sitting in a chair and need to lie down and rest, but it takes a long time to sleep - if I am able to - because it is hard to breathe lying down.  made a doctor's appointment for Thursday at 3:30pm. 10/25/2016 same as yesterday. may be getting a little worse. 10/26/2016 my worst day yet. same as the days above, but can't get relief even for a moment. Constant pain and discomfort, tightening band around my head - helluva headache 11/8/2016 Still feel nauseous about 3/4 of the day each day. Doctors think it is the medicine that makes me sick: Indications for some of the meds say will make you sick. 11/11/2016 Sick as ****. I hope that is what is causing me to be so confrontational with people rather than me turning into an a**hole. I went off on Jecca. Got jealous because she contacted an old boyfriend of hers. Turns out he called her because he has some type of injury to  his hand and foot and wanted some sympathy. I told her if she continues contact with him I would start hanging with sluts and send her pictures. I told him I would stomp his ass if he kept contacting her. I got pretty nasty with her before we finally made up and resolved it. 11/12/2016 I have been off the diary except sporadically for a while. I thought I was getting better: No such luck. Started driving to class today and threw up all over myself and my car. I am extremely nauseous, and have a tremendous headache.  I get hungry as hell, but then get full after only two or three bites of food. Death would be a blessing. No energy, listless, no ambition, no drive. Headaches are the norm for me, and the ear infection is chronic with constant tinnitus. 11/13/2016 pretty much the same as yesterday. a general feeling of malaise, nauseated. 12/4/2016 I was invited to Christmas dinner. I hope I can have the energy to go. It is getting to the point I don’t even want to be around anyone. I just want to be in the comfort of my own home. Becoming even more of a recluse than normal. New medication regimen seems to be working a little better. Still feel weak and sleepy most of the time. I guess tinnitus will be permanent. 12/12/2016 Was invited to a show free of charge to sell my jewelry. I don’t have the stamina to set up my display, much less be there several hours. Headaches are normal, and tinnitus is constant. 4 days now with no sleep. Period. Zilch. Nada. Bupkiss. 12/24/2016 I can’t make it to the Christmas dinner I was invited to. I don’t have the energy to go. Staying home and cooking chicken with vegetables. 11/14/2017 It has been a long time since the last entry, but what's the point? At least by reading it I discover again the pain and shitty feeling all the time are not new. I don't know what the merit is in that, but it makes me feel like maybe I am not getting worse: I just get the unparralled joy of feeling like total **** all the time: Nausea - constant; headache - constant; tinitus - constant. It is all 24/7/ 365 until I manage to sleep for a little while - 3 or if I'm lucky, 4 hours at a time.  YIPPEE!!! On a different note, Jecca and I are no longer together. When I incurred tremendous financial burdens because of the CHF, she no longer waned to stick around. It has really done a number on me emotionally, but on the other hand, it wouldn't be fair to want her to stick around and watch me die, becoming a widow in the prime of her life.   I would like at my funeral, Crossing the Bar read during the service: Crossing the Bar   BY ALFRED, LORD TENNYSON Sunset and evening star,    And one clear call for me!   And may there be no moaning of the bar,    When I put out to sea,  

But such a tide as moving seems asleep,    Too full for sound and foam,   When that which drew from out the boundless deep    Turns again home.  

Twilight and evening bell,    And after that the dark!     And may there be no sadness of farewell,    When I embark;  

For tho’ from out our bourne of Time and Place    The flood may bear me far,   I hope to see my Pilot face to face    When I have cross’d the bar. I started an online ministry - not much participation - only 22 members after a few months, but I post sermons and positive thoughts for the day, most of the time twice a day on the positive thoughts. Well, I will stop blubbering and blathering now. Nothing can change, unless I somehow have the good fortune of being hit by a Mack truck or a meteor falling from the sky to put me out of my misery, or something like that. Yippee kayay. Anecdote: I may seem at times to not have much patience with people when they have their little foibles. I am not cold hearted, and have tremendous empathy when people are truly in pain or have grief. It is the little mundane bs that people grouse about that annoys me. So forgive me if sometimes am a bit impatient and high strung. you may share this with others  if it will be a testimony or can help with anything.