Long time – no talk, eh? I am pretty bad about that. Whether it be my stress, PTSD/anxiety or my health. I find it is just easier to handle it on my own. Part of it is deliberate, but part of it happens without thought. So, what have I been up to?
Parenting school – aged kiddos and doctors appointments, a lot of doctors appointments. Nearly everyday I have a 1 hour bus ride in each direction, an appointment and then still have to be ready to be home, cook a meal, do homework, baths and work late into the evening some nights. I really want to do an update on my PTSD, but I think I will do that on a whole separate blog. Let’s start off with the kids!
Lillia is in 3rd grade and Noah is in Kindergarten and Arianna stays home with me. Both Lillia and Noah received raving reports for their 1st semester. We were told at both conferences that our children have an amazing capacity to learn. Lillia I am told is always the mediator in the group if not the leader. She’s very independent and polite and is always willing to help. Which sounds like my girl. She is an amazing reader and is always ahead of the class there. She also does a great job in Science (her favorite subject) and Math. She hates math though. She likes to read, but does not do it enough. If we take the tablets and TV away it’s fine and she reads and enjoys her time spent reading. I think she’s just getting to that age. She never wants to do homework, but loves school.
Noah is very shy and has a lot of anxiety and struggles in social environments so starting school was scary to me – he was excited, well until I left the classroom. Noah is insanely creative. He already makes his comics! The series is called The Messy Kids! I’m keeping as much of it as I can so I can show him how it develops over the years. Basically they are the “Messy Kids”and the “Messy Kids” are super heroes and Mommy comes to clean the mess up…. so I am naturally the villain. I’m gonna do another blog on this because theres actually quite a funny story! Maybe I will post some photos in that blog of his work also, let me know if you’d like to see that!
Anyway, back to school…
Noah is doing great and he also a great capacity to learn. He’s actually further ahead than some of the class in Math and Reading. He’s not reading quite yet but as far as language arts he’s doing really well. He can already distinguish sentence parts. He identifies nouns, adjectives and verbs. In math he is already doing grouping, pairing and addition. Outside of school, his Dad actually taught him to count to 100 and beyond by accident. We use to counting as a way of coping and calming down and he just kept going. Now he wants to count to 100 for everyone! He has the alphabet down and he always knows his sight words. In fact he insists on defining and spelling them too. He loves showing us his work. Some mornings are still very tough. I feel like it is just his anxiety but I hope it continues to get better.
Arianna I am also amazed by. My kids have such large vocabularies, she converses very well much like her big sister. She’s still as sassy as ever and still such a diva. She is going through a growth spurt though and I am starting to realize she really isn’t my baby anymore. She is a big kid.
What else has happened?
My doctors appointments have been just one after another lately it feels like, but I will try to be brief. I was suppose to have vein surgery back right after Thanksgiving, but I got a call the night before. They called to cancel the surgery because my insurance just now realized (after 4, maybe 5 visits and 2-4 tests) that my vascular surgeon was out of network. The surgery was a stint procedure. I lost it to be honest. I have been diagnosed with at least 1 out of the 3 disorders for 7 years and I had finally found a doctor I was more than comfortable with and getting treatment and now here I am. Sometimes I truly feel it’s my luck. Like the most ridiculous shit happens to me. Anyways, I am now waiting to get into a new one, but I’m having all kinds of cardio-vascular issues right now so I was looking forward to some relief. It would also help us narrow down what is causing my flank pain as it was the surgery to treat nutcracker syndrome.
From there, we can talk about my cardiology visit. It went well, I have an appointment set up a 48 hour heart monitor and an echocardiogram. He explained to me that I have a partial right bundle branch block, but he want to look at a few different things. With my medical history a number of things could be causing my symptoms. Which are basically chest pain, shortness of breath, palpitations, tachycardia, light-headedness. Aside from that I have for months now randomly felt like I’m on a rollercoaster or like I got up to fast associated with fainting spells. At that office visit, like every office visit I was tachycardiac so they did another EKG. I do feel like out here in Seattle I have way better comprehensive care. Oh and I finally set up my endoscopy and colonoscopy. My GI’s medical assistant and I have been trying to schedule this since the summer. Well my cardiologist is next to my GI so I walked over and was able to set that up. So progress!
I also starting getting on top of my female reproductive health. I got set up with high risk specialist, we are going to begin exploring and testing to see if I am suitable still have any children or if it would be unsafe at this point. I also began ovulation tests as suggested. We are NOT trying, but we are worried that there hasn’t even been a question of if I might be pregnant because my Nexaplon (implant birth control) expired back in 2016 and I completely forgot about it. From there we will decide if I want to explore trying and when and go ahead with a laparoscopy to just check out how things are in there and remove any cysts, endo and that sort of stuff. Or I have the choice of a hysterectomy so I’m working on that.
So, my neurologist- we discussed my migraines and headaches and tremors. She believes my tremors are a familial tremor, which makes sense because everyone in my family shakes. We set up a MRI/MRA and an appointment with the ophthalmologist. My MRI came back really well, no aneurysms or anything! The dilation they saw back in 2013 but it is stable. After that I had my ophthalmologist appointment. That went a little less well than the MRI. Way back in 2009 or 2010 I was told I had high eye pressure levels (35 in one eye and 38 in the other), but I could not afford to see the ophthalmologist so I never followed up. Yes, I know how bad that is. Well they confirmed glaucoma, and pseudo tumor Cerebri which basically cause intracranial pressure hypertension. He also said he found clear cataracts.
My ophthalmologist was amazing. He was funny but knowledgeable. He called my neurologist right there and they got me started on a glaucoma medication called Diamox and they are going to do a lumbar puncture. In lay mans terms a pseudo tumor Cerebri basically means I am making to much spinal fluid and its is filling in my skull and around my brain. They need to figure out how bad the pressure is and they will drain it and I will likely have to have repeated lumbar punctures to continue draining it. He also set me up a field of vision test to see if there are any blind spots. Here is a little more info on the pseudo tumor Cerebri in case you are wondering, https://www.mayoclinic.org/diseases-conditions/pseudotumor-cerebri/diagnosis-treatment/drc-20354036 it has a lot of good info. It can be caused by Lupus or other problems so now we just have to learn what causes it and treat it.
I am wildly behind on my rheumatology appointments and I am supposed to have an MRI set up and I keep forgetting. I also had my first pain management appointment. It went okay, I got the obligatory “but you are so young and pretty” line. Hopefully after a few visits it will get better. As you can tell I have a lot going on and I am just trying to stay on top of what I have going on.
This last week I also lost a beloved family member, my Aunt Debbie. I plan to write a memorial blog because I have so much I want to say. It has been tough though, really tough. Her and I were close and she was just so young and it was so sudden. I am still grappling with the loss of my Mom. I have to stop or I am going to start crying again and I just cannot do that right now. I am trying to keep my head up.