Sorry it has taken me so long

Okay...SO much stuff has happened in the past few months, I don't even know where to begin!! In fact, I will probably post this, and then add addendums to it later after I have gotten some sleep! (I worked last night). First of all, thank you to any and everyone who reads this and keeps up with it. I appreciate it very very much. Secondly, I would like you to take notice of a bunch of new pictures I have put on here. these are extremely recent (one from even last night before I went to work). Although I am not any healthier (more about that later), I find that longer, DONE hair, and a little make-up goes a LONG way in terms of "looking well". I can't have my patients thinking I am a sickling when I am the one who is suppose to take care of THEM...lol. Anyway....onward.
The Mayo Clinic, although a fascinating and adventurous learning experience, ended up not being as helpful as I had originally hoped. I met with a bunch of doctors who had only heard of Kartagener's Syndrome, and that was at BEST. They did tons of tests on me, and archived a lot of MY experiences throughout my life, so at least it was another case study for other people who seek information for themselves out of what they have gathered from me. It wasn't until the last day I was there, when I got to meet with the pulmonologist that I got any insight into my current state, and it still didn't solve the acute problems that I had. Virtually the only thing that HE said was "Yup, every symptom that you have falls right under the signs and symptoms associated with Kartagener's." Yeah, but how am I suppose to continue to LIVE with this?? It was a frustrating thing for me. I do feel like some things were ruled out, and other things were accomplished just because of the experience itself. It was unforgettable, and my HOPE is that the data they collected about ME, could in some way be used to help someone else...to answer some questions for another person desperate for understanding.
My sweet, patient, loving mother took the trek with me, and for that I will be forever grateful to her. She has taken many many journeys with me as I have trudged through life, much of them unpleasant. The mere fact that she was "Mom", and "Mom was there". Speaks volumes about her unconditional dedication to her calling as MY Mom. I love her SO very much!! THANKS MOM!!!
It really wasn't until I got back to Utah that I got the acutely agitating problems taken care of. I had 3 very large cysts in my pelvic area. One of them had ruptured (which was what caused all of the ongoing pain), and the other 2 were making life more than usually unbearable for me. The Dr. removed a total of 300 ml. of fluid, and although much of the pain subsided my energy level since then has been just drained! However, I am SO glad that they were able to drain those! I cut back to 75% at work (which amounts to 5- 12 hour shifts in a 2 week pay period instead of 6), which odd as it seems, has worked out quite nicely for me. I am literally exhausted after just 1- 12 hour shift now, and very frequently will sleep for a really long stretch of time just to recover, especially during the times I have active infection going on. I don't have to work more than 1 shift in a row and I will have at least 1 night off. Working nightshift you might think that is sort of backwards and odd. But for me, because I am so tired, I usually will work the night, sleep all day, and then be up for a few hours and sleep all night, and then have a nap before returning to work that next day. See? Exhaustion!
Because I have been SO SO SO SO fortunate as to be able to live with Bryce and Vicki again, I am able to have my own little space to just go and "be". Most of the time I am sleeping, and it is nice to be in a house with other people ie. family, so I don't have to be alone, and they don't have to worry if I am alive or not when I don't come upstairs for a few days. Having those accomadations has literally saved me. Financially, I could never be making it on my own right now, say nothing of upkeep on a house. I have so much fatigue, I have energy for work and that is about it, and I am not quite ready to give up on that just yet (ie. go back on social security disability).
The next "New thing" is the University of North Carolina. This is THE premier place that studies all types of ciliopathies...aka, "my" Kartagener's Syndrome. I have been signed onto a support/information/feedback website for quite a long time (PCDfoundation.org), and I just recently started posting comments and questions. Wouldn't ya know it, I got some answers! Pretty immediately! Within days I got information about contacting people there in N.C. concerning the rarity of my circumstances, and they seemed quite eager to work with me. THAT seems to be the place I need to go next, and THAT seems to be the place I feel I can make the most contribution from my life of having this condition, while at the same time get more information, and answers, and explanation and so forth. I know I am not the only person who suffers, and if I can contribute anything out of my suffering to help someone else, my life will continue to be enriched. I have been in touch with some of the people involved with the research end of this disorder, and I hope to be able to make arrangements to see them before the end of the year. Meanwhile, the pseudomonas remains chronic, and is becoming more of a menace. By that I mean, now I am getting ear infection, sinus infection, bladder and kidney infection as well as the pseudomonas aeruginosa in my lungs. I continue to try and do everything I am suppose to to fight it back, knowing it will be return less than 28 days after finishing the 28 days of Tobi and the 21 days of Augmentin. It is the way I live, and there isn't much I can do to change those circumstances, so I try to be as content and as happy as is possible, as I am WELL aware of many many other people who have much worse conditions and symptoms than I.
On a happy note...I am nearing the 6th "brain surgery free" year! An anniversary I am happy to celebrate each and every year!!! This is all I will post for now. Until next time be well, be safe, and God bless.