I met with my Psychiatric Nurse yesterday to discuss my hospital visit and where to go from here. She herself is pissed about how I was treated in the hospital, particularly in how the staff refused to accept that I have PTSD (treated it as a delusion), and that they actually diagnosed me with a psychosomatic condition rather than look into and try to understand Chronic Active Epstein Barr Virus. Apparently, they thought that I was over-exaggerating how bad I felt and that it was tied into my mental state. Well, of course, when I am off emotionally, it affects my CAEBV symptoms, but that doesn’t mean that it is psychosomatic. My Psychiatric Nurse tried to explain to them what CAEBV is, as I was the first patient in that hospital to ever come in with it, but as I’ve shared in my blog, I didn’t even get to see a medical doctor until the last two days of my hospital visit largely because they really again thought that I was delusional. I think that part of the reason why this happened, though, is that in the Providence/Swedish records, my only psychiatric diagnosis recorded might be bipolar disorder, meaning that they are only going off diagnoses that someone in that health care monopoly has put on my chart. And, I’m pretty sure too that CAEBV is not on my chart within those hospital systems yet. What this means, though, is that every time I go to a hospital in the area, that all they see is bipolar disorder, which really messes up my care, especially since at Swedish they didn’t call or listen to my outside providers who have diagnosed me with DID, CPTSD, ADHD, and CAEBV. So I’ve ended up in this ridiculous pattern where hospitals are some of the worst places that I can go to get care, because they think all kinds of weird things about me, especially if the doctor(s)/psychiatrists are ignorant regarding CAEBV. Hopefully, though, if I work with my doctors (and they work together) we can get these diagnoses in the Providence/Swedish system.
My Psychiatric Nurse did try to tell the hospital, too, that a big part of the reason why I had a breakdown was because I have been having repeated CAEBV and other viral activation (I tested positive for Herpes Virus 1 aka mouth herpes and CMV too) for about a year and am extremely burnout from it (rather than what they thought, which was that I am not med compliant and must not take care of myself. Much of the time hospital psychiatrists just assume that the person hasn’t been taking their medications and throw everyone into this boat). She told me and David too that the Herpes Virus 1 can actually wreak more havoc on the body than CAEBV during a re-activation, as can CMV, so that in my case it’s hard to know exactly what is going on. She wants me to see a Hematologist in Fred Hutchinson Hospital/Center in Seattle regarding my viral conditions and consider a stem cell transplant, because that is the only proven method to reduce the symptoms of CAEBV and re-activating viruses like it. Also, she referred me to a pain clinic in Seattle so that I can be put on low-dose Naltrexone for pain. In addition, I’m seeing an adult ADHD expert from her clinic in about a week and a half who wants to discuss the possibility of me going on a medication called Vrylar (a new antipsychotic). I’ve tried Vrylar before and it wasn’t as effective as Abilify, though, but I was only on it for about a month. But, I may try it, because part of the reason why I’m doing better is likely because I was able to work through things a little more in the hospital than at home, even though the doctors and staff there were working against this. What I did eventually was to just stop talking about my trauma, though, to them and work through it on my own, because they still thought that it was delusions and hallucinations and I knew that if I talked about it they might have kept me there unnecessarily longer.
After my appointment, David and I went out to eat at the Saffron Grill in Seattle, which had some of the best Indian food that I’d ever had. It was really great! I knew right away that it was likely going to have good food because it was very crowded even at 2:30 pm. We had to wait to get a table even at that time of day. It was definitely worth it though.
I convinced David to go to Woodland Park Rose Garden after lunch. I’d never been there before, because we would always go to Point Defiance growing up. It was really beautiful and in some ways I think better than Point Defiance. But, I’ll still always love Point Defiance I think just because I grew up probably 15 minutes from it.
We then went to the Woodland Park Zoo, which was something that was totally unplanned. It was fun, but, we got there at 4:15 and they closed at 6 so we didn’t get to see all of the animals. We’ll probably go back this summer or fall when we have plenty of time to take our time and look at all of the exhibits. Overall, though, I really did have an excellent day yesterday.
I’m not sure if we’re going to do anything today or it we are just going to clean the house and hang out around it. We’ll see. I’d kind of like to go mini-golfing or paint some pottery. I do need to be mindful, though, and pace myself, so likely I’ll stay home today.
Well, that’s about all for today. Thanks for reading! Feel free to comment below.