This post has been a long time coming, and honestly, I will probably have to “save draft” and pause and come back to it quite a few times before I even finish, because my head get’s all foggy when I’m on the computer for a while. So who knows how long it’s even been since I started it, and now, when it’s being published, haha. Please ignore any grammer or spelling errors, haha. Anyone that knows me knows I am the first one to text back with a correction when you misspell or miss use a word! lol One of my pet peeves, for sure! But, I’m not that quick with my mind anymore, and now I’m the one messin up the whole thing! And dang that auto correct, drives me crazy way more than it used to!! haha Anyway, I guess I should stop the ramble, before it gets into who knows what, and start at the beginning.
Right after Halloween, 2012, I got sick, and long story short here … I never got better.
It was a typical day for me, got up at 6:30, got dressed and ready for the gym, got Connor up and ready for school, then out the door at 7:25. Walked him to class, then came back home to eat breakfast, and clean the kitchen, then out the door for the gym. I spent about 2 hours at the gym, then came home, made my protein shake, showered, and got ready for the rest of the day. I ate lunch, ran my errands, then picked up Con from school. Then we made a snack together, went through his school work, and then I felt bad. A fever. I hadn’t had a fever since I was a kid, I’m not the type to run a fever, but man, once you feel fever, you instantly know exactly what it is. I kept going about half strength through my normally busy afternoon routine, and then crashed at night. When I woke up the next morning I was fully expecting to be sick, the flu or something, but I felt great! Went on about my day just like I normally do, and was good to go! A week later, the same exact thing happened. I ignored it, and kept going, and then it started to form a pattern. Every 3 days. A fever in the afternoon, lasting until the next morning, the chills, sick feeling, and headache. I could mark it on my calendar. Every. 3. days.
I went through November like this, and towards the end of the month I really started to notice I was slowing down. Big time. And I couldn’t stop it. I already eat “clean” but I cleaned it up more, and kept going to the gym regularly, despite the fevers and fatigue. I just knew if I could be healthy, I’d push through.
One day in early December I was trying to push through, and I just hit a wall. Literally, actually, haha. I collapsed on the bathroom floor when I was getting ready. My muscles just quit working. So I knew something was really wrong, and I went to my family Dr. She ran tests, asked questions, and sent me for a heart echo. All normal. She sent me to the cardiologist, he cleared me, normal. She ran more blood tests, normal. I ended up in the ER one night, I couldn’t breathe (and with a history of PE’s, we freaked). Chest CT, chest Xray, blood work … normal. Normal, normal, normal. I was starting to get really sick of that word … until she started using a new one – “Oncologist” Ummm, no thank you, I’ll take “normal” back please! Oh please!!
Mid December I started working with him, he was awesome, and actually already my dr for the hematology side of things, and assured we’d get to the bottom of it. Fevers were every single day at this point, and they were wiping me out!! I had to stop going to the gym, and stop running errands like I used to, and save going out for special occasions. I was struggling with Connor too, just getting him to and from school was hard. All the lymph nodes in my neck started getting enlarged. I was getting blood clots at this point too … hello lovenox.
New sets of tests at this point, scary ones. More serious blood work, full body CT with contrast … bone marrow biopsy. My bone marrow was “beat up” with inflammation, but that didn’t tell him more than something was wrong. He sent me to ENT for pockets in my sinuses seen on the CT, but was cleared there with incidental findings. No cancer markers, thankfully, that was honestly a scary time! I had to be cleared by OB/GYN as well, I had ovarian cysts, and one ruptured (ouch!), but my lady parts Dr gave me that “normal” word too
Through January to get through all of that, and I was getting worse. I had to cancel our trip back to Cali for Christmas, so I was upset, and at this point they were asking to admit me, but I was fighting it. I wanted answers, but I needed a break. What little energy I had was being spent with Dr’s, at the hospitals, being poked and prodded, and not with my family and friends. Oncologist finally said it was out of his realm, and sent me to Infectious Disease. The time it took to get me into an appt was a great break for me, and I was refreshed and ready to go. I mean, ID doc, how cool is that – think House – this guy is awesome!
In my first appt with him, we closed down the office. He spent 2 hours with us in the room, face to face, going over EVERYTHING, and then he ordered some more blood work for some crazy off the wall things. Back in one week. The only markers in my blood work were ones he said he would expect from somebody getting fevers everyday. Everything else was normal.
He gave us the term “Chronic Fatigue Syndrome” and asked us to do some research. He didn’t diagnose at this point, but went over a few CFS markers that I clearly had. Brain fog, fatigue, fevers, “crashing” when I try to do too much, headaches, insomnia, swollen lymph nodes, cognitive/neuro issues, collapsing after pushing myself, which sucks by the way, haha. He finished with it doesn’t just have a cure, it takes years, about 5. Back in two weeks.
I knew at this point that was what was wrong with me, and it hit me hard (way harder than when I hit the floor after collapsing). I wasn’t going to get better, not any time soon at least. One day I cried on the shower floor for at least 45 minutes. I couldn’t stop, I was so upset, I wanted my life back. The next few weeks I got worse, cognitive/neuro wise, and when we went back that worried him, so he wanted a spinal tap. We put that and a brain MRI on the books, and kept going day to day.
The spinal tap itself was fine, didn’t hurt, but holy hell to the week following. That night I got the worst headache ever, and it felt like there was a 100lb weight on my upper spine (not even where they did the tap) It was crazy, my vision was getting really blurry, and I began to be incoherent. We went to the ER the next day, per the request of the radiologist, for a blood patch, but they wouldn’t do it at first, because of all my symptoms, and I spent 12 hrs there for testing and I don’t even remember it really well, I was completely out of it. I finally got the blood patch after all of that, the patch itself was horrible, but instant relief! It was amazing, I could see, and think, and I walked out of there just over an hour later Unfortunately, 12hrs later my blood patch began to fail, and all of those symptoms came back slowly, until I got to a breaking point again, and was incoherent. James called the radiologist again, and they scheduled for me to come get a new one at their facility, so off we went. This one was much better, and same thing, instant relief. After being carried in, I walked out all better. I was so sooo worried, but that one held, clotted up, and BAM, take that spinal fluid leak! haha Took a couple days hobbling around from pain, after all they did shove a TON of blood in my spine, and it needed to work itself out, but back to moving on
Last results day. Back at the ID doc. Brain MRI normal. Spinal fluid testing normal.
My opening spinal fluid pressure was really high, so I have to go to Neuro for that now, but he diagnosed me with CFS, and now we are moving forward with that…
So, that is the really short version of my story to get to that devastating diagnosis, of CFS.
I really needed to share it, to explain why things have been slow around here, why I had to clear my books, cancel all my photography sessions the past few months, and why I am closing down the session side of things, and making some business changes. I will not be offering any sessions for the next year, but I truly hope that all of you will keep this blog bookmarked, and come back to it often, because I do have some awesome things in the works, and I can’t wait to share it with all of you!
So, this blog is going to be making a change. I won’t be featuring sessions for a while, but I of course will have the occasional “session” that I shoot for myself, and I will be happy to share those! I am going to move this blog into a catch all, for everything I love, web/blog design, interior design (when we are working on our house), and of course, photography still plays a major part in my life, so photoshop tutorials, photography tips and tricks, all things photography really, and I will still be offering my online photography class, and mentoring others in the community!
I will also still be selling my “Complete Guide For Photographing Your Kids” and “FlipIt” and I am actually working with an amazing digital designer that you all know and LOVE, to bring you fun fresh new ProPhoto Blog Themes – which will be available very soon! (Like a few weeks now, totally awesome, right?!!)
Thanks for letting me share the start this new journey with all of you! I have been quiet for a long time now, and the emails I receive about it are so flattering, you guys are all amazing! Thanks for sticking by me so far, I’m sharing everything now, it was too hard when we didn’t have any answers, and I hope you can all respect that I definitely know I don’t want to lose my place in this amazing artistic community, so I hope that all of you will follow my journey still, and be a part of it, as much as you can! I will be using this blog as my outlet for it all, everything creative in my life, so make sure you come back and visit often