I have been having an extremely hard time. My mother is not the same, I miss my sister and family and I feel lost yet again. I saw my mom yesterday and I have to talk so loud for her to hear me, plus she doesn't understand so much. I become so frustrated with her and myself. I think to myself, "You clearly could never have a child." I know that my mom is going to die in the next couple of years and it's killing me. She will be it. I keep grieving. All of the time. Between the loss of family members and this illness.... On top of that, I have several things going with CFS right now that are really making my life a living hell. A rash all over my legs that itches like crazy. I believe in the whole mast cell theory with us. I have so many allergies and reactions, it's not funny. So many people ask me, "What can you eat?" Good question. I went to an allergist today and will have tests for "mast cell activation syndrome." The treatment isn't grand or great, but it would explain all of these insane reactions TO EVERYTHING. I want to know more than anything....why? Why could I eat pizza for years and now all 3 things that make up pizza cause me to be so sick? Please don't say leaky gut syndrome. I am so over that diagnosis with crazy treatments including growing your own sauerkraut, which made my place infested with flies. Or Kefir, which I made and it did zip for me. The allergist I saw is from what I can tell, pretty good. She believes in CFS for one. I have to have several tests for Mast Cell Disorder. I was up all night last night due to eating half a muffin yesterday and my IC went nuts. My rash, too. I remember years ago, with CFS being able to eat everything. Even if it is leaky gut syndrome, there isn't much that can be done about that. I have tried EVERYTHING. All that anyone recommends, done it already. Except for of course the crazy fecal transplant. Not going there yet. Honestly, it may work but it makes me laugh. Beyond gross. My doctor said the last thing that was written up about fecal transplants did not give it the thumbs up. It doesn't work for everyone, by any means. I had said a few days ago that I was going to try dating again but I realize, I just don't have it in me. I am too tired and if I eat something that doesn't agree with me, I am down 2 days. I can't think and if I can think, all I can think about is how to get out of this hell. I seriously am glad so many have spouses and boyfriends with CFS and at the same time I wonder....how? How do you have the energy? I don't feel lovable with this disease when all I do for the most part is try and decide to get better and all of my energy is going there. My energy would not go to the BF, which was a huge factor with the last guy I was with. He always felt neglected. Every relationship I have been in, the illness comes first. It has to. And... I go and see my CFS doc on Wed and the office told me to decide on one reason I am coming in. In other words, choose one thing to discuss. Really? How with this disease? One thing? I have a major rash, I need trigger point injections for Fibro but they are only covered 4 times a year and they only last 2 weeks each time. Also, I want to talk about my 23 & Me testing since I don't understand it. Choose one thing....sure. With this illness, that is near impossible. I am so tired and lonely. I told my therapist the other day....all of my good memories are from years ago. When I was better, when more people in my family were alive. All of my Aunts and Uncles are dead, my father, my sister....gone. I want to have people in my life to make good memories with. I want to get better. Why is it so hard to get better? I am not on death's door, I am not housebound, but I feel like I can't get past this threshold that I always remain at. It's neither here, or there. It's an in between state, that I hate. I know many would love to be in this stage that I am in, but when you have been here for 24 years, you want more. I once had more. I went to pick up Singulair today. Very expensive. All of my treatments are so expensive. Acupuncture, a therapist, meds, supplements, supplemental insurance; I seriously wonder how anyone (the government) really thinks we can make it on just Social Security. And...if you do have to go into subsidized housing; what if you have to wait for 2 years? Where do you go in the meantime? So much about our government just doesn't make sense. The new allergist said to me, "If you don't have a supplemental insurance with Medicare, save up for a coffin with the new ObamaCare." I do have a supplemental insurance, but boy did that freak me out. She said, "As long as you are well and working, you will be okay, but if you are sick and in a bad way, it will get worse for many." I have not even read about ObamaCare. Why? Because I don't want to. I don't know how much more negativity I can take. Anyway, an update. Too much on one plate to talk about one thing. Don't even know what thread or where to put it. Just an update.