2018: Reflections of a chronically ill 30-something

image description- dont expect any new years resolutions from me i plan on staying the same awkward sarcastic foul-mouthed delight that youve all come to know and love
image description- dont expect any new years resolutions from me I plan on staying the same awkward sarcastic foul-mouthed delight that you’ve all come to know and love

As I write this 2018 is drawing quickly to a close and oh what a year it has been: emotionally, healthwise, politically….don’t get me started.  As I am writing this from my bed curled up in a fleecy warm throw blanket while three of my four fluffy cats are lounging on the heated blanket I keep at the end of my bed.  And I am here ready to start reflecting on what 2018 has been like and what 2019 might bring. 

2018 has been filled with so many ups and downs. 

Health: I struggled with chronic throat infections for 9 months until I had my tonsils removed in July 2018, which was also my first surgery to date. I was diagnosed with hypothyroidism and then Hashimoto’s Thyroiditis, my first official autoimmune disease..soo exciting. I started Immunotherapy for my allergies, asthma and chronic bronchitis. I have had two rounds of botox treatments for my chronic migraines which will hopefully reduce my migraines long term.

My IC has been waxing and waning poetic with me all year. After my tonsil surgery, it seemed to go into hiding for a bit…maybe to give me a short break? But the last two months it’s come back with a vengeance and I’m in all the pain and just living the IC dream… which is to say I go to the bathroom 4-5 times a night plus some other stuff, which I’ll spare the details on right now. Am I missing anything?… hmmm I think that’s it… I think that’s more than enough. It’s been a busy year for me and my health! 

For 2019, I would like to see more health improvements. I would like the botox and immunotherapy to actually work and show signs of improvement. 

Educational: Going to grad school as a chronically ill person is a challenge, to say the least. But I just keep on truckin and now I just have one semester left! Granted it will be the most challenging semester because it will be a full-time internship where I work 32 hours a week (4 days a week) at an internship that is an hour drive from where I live. But going into 2019, I am looking forward to the internship and all that it will bring. 

Sleep: There are days I struggle to get out of bed because my whole body is rebelling against me and is screaming in pain. So at some point in the year, I started setting my alarm for 30 minutes before I needed to wake up so I could take some pain meds and/or CBD oil. And then I go back to sleep until my alarm goes off again. By the time I wake up, I am in much less pain. Looking back on this… this was a good choice, I will continue to do this going forward.

Emotional: As you can imagine all of this has had a lot of impact on my emotional well-being. Along with some other family issues that have been going on. I have been struggling with my mental health in 2018. But in 2019, I am really hoping to get a hold on it and this is something I will be talking about more in the weeks to come here on the blog. 

Relationships/Family: Relationships of any kind can be beautiful or devastating. I have been so fortunate to have friends and family support me along my journey. My best friends who are always there for me, even if we hardly ever get to see each other for one reason or another #gradschoolife. I have also had the blessing of finding a new family in Aaron’s family this year. His mom, as well as his brother, and sister-in-law plus their 3 kids have really become a beautiful family to me that I never expected. 

But I have also had the misfortunate of having devastating losses this past year. Some in the form of deaths in the family and others in the form of bridges being burned… but what I have learned from it… is that no matter what happens, life goes on and there is nothing we can do to stop it. 

Image description- In three words I can sum up everything I learned about life- it goes on
Image description- In three words I can sum up everything I learned about life- it goes on

Love: And, of course, there is Aaron who is right there with me no matter what, even when times are tough. We have a beautiful family together…Me and Aaron, our son, Reid and our four fluffy cats. We don’t have an Instagram perfect life and I don’t really trust people who do…or rather claim to have that. But push come to shove I know we are in it together when things are tough.  

Here are a few family pictures we took this year. All of our pictures were taken by the amazing Tiffany of TMGSFotographyShe can also be found on Facebook at TMGSFotography, she is local to DC/MD.

18a
Image description: Picture of Rachel, Aaron, and Reid all smiling but not looking directly at the camera. Photo courtesy of TMGSFotography
17a.jpg
Image description: Picture of Rachel, Aaron, and Reid all making funny faces at the camera and sticking out their tounges. Photo courtesy of TMGSFotography
22a.jpg
Image description: Picture of Rachel and Aaron holding hands and walking with their backs to the camera and then looking back to the camera and smiling.  Photo courtesy of TMGSFotography
25a.jpg
Image description: Picture of Rachel and Reid holding hands and facing each other smiling and laughing. Photo courtesy of TMGSFotography

Will 2019 be better than 2018? I sure do hope so. 2018 was filled with love and loss…ups and downs. But aren’t most years? I think that every year we hope that the next year is better than the last and it can be easy to forget that each year comes with its own set of challenges. I’m not being pessimistic, this is more realistic actually.

As a chronically ill 30-something who is going into my last (and most challenging) semester of graduate school, it’s easy for me to say that I am going into this new year with a brand new challenge. Am I looking forward to it? sure. Am I nervous and anxious? You bet! I have to earn 500 hours at my internship, from January 3rd to May 6th. So New year here I come! Jumping right into my internship…rolling up my sleeves saying EFF THIS, lets goooo!!!!

Okay, I’ll stop myself here. But I have so much more to say about resolutions and goals related to health. Expect another post soon! 

See you all in 2019!

image description- fireworks lightig up to say happy new year

Advertisements

A Trip to the Neurologist

image description- Oh I'm fine, just faking a migraine so I can get some botox in my face
[image description- Oh I’m fine, just faking a migraine so I can get some botox in my face]
Today I went to the neurologist for my migraines which have been worsening over the past year and a half.  I’ve been in and out of doctor’s offices for my migraines for over a decade now. I’ve tried over a dozen migraine medications, neurologists, ENTS for vertigo and so on. 

But recently everything has been much worse. I have migraines with aura. That is flashing lights in eyes and increased light sensitivity. But now it’s even worse, I have to close my eyes when lights are turned on and off in a room because lights start flashing in my eyes otherwise. It’s frustrating. And recently, any sudden darkness has caused flashing lights in my eyes, like driving under bridges…which as you can imagine can be dangerous. 

So I finally got in to see a new neurologist. I was anxious to meet him because my primary doctor of 11 years warned me he might scare easily and I can be pretty overwhelming with all my health issues. But he immediately was friendly with me and interested in all of my health issues, not just my migraines and vertigo. 

I can’t even express how important it is for chronically ill people to be able to trust their doctors and for the doctors to be able to look at us as a whole person and not just as the one body part that is their specialty. When I was first diagnosed with interstitial cystitis, my urologist that I was seeing basically looked at me like a giant walking-talking bladder. She never looked at other parts of me and how it impacted my health. I hated that and it made me stop going to see her. 

But looking at a chronically ill person a whole being, in a medical and holistic way, is beautiful in its own way. Most chronically ill people will tell you it’s hard to find a doctor like that…but when you find someone like that, you hold on to them for as long as possible. 

So today, this neurologist, looked at each of my illnesses and medicines and how they impacted my migraines. I was impressed with his thoroughness. He seemed to really want to help me. He didn’t rush through the initial exam. I hate when doctors do that. There’s nothing worse than feeling like a second or third priority to a doctor. 

We made a plan for my migraines…a big plan. A migraine plan. 

  • Get an MRI (I did have an MRI about 10 years ago but it showed nothing)
  • Get an EEG (Which is like an EKG  but for the brain, so it detects electrical activity in the brain)
  • Go to the ophthalmologist to check for papilledema (which is when there is increased pressure in or around the brain which causes part of the optic nerve inside the eye to swell…this can cause visual disturbances and headaches)
  • Wean off of migraine abortive medications (Sumatriptan and Fioricet)
  • Start Botox for migraine prevention. 

This is a big migraine plan, to say the least, there’s a lot that is going to be happening along side of my surgery in July. But sometimes that is just how it goes…when it rains it pours. 

Botox for migraines 

Some people may not be familiar with botox for migraines. Let me assure you, I am not making this up. This is quite a real thing. https://www.botoxchronicmigraine.com/ is a great place to start getting information about it. But I can give some basic information about it here.

Fast facts about Botox

  • Botox was approved by the FDA in 2010 to be used for chronic migraines. 
  • Botox for migraines is for prevention for people who have at least 8-9 migraine days a month. I have migraines daily if you were wondering. 
  • The botox injections are done with a small needle, that feels like a pinprick, that are done all around the front, sides of the head and back of the head. 
  • Injections are given every 12 weeks by a botox specialist, who is a doctor, that is specially trained to give the botox shots. 
  • About half of Botox annual sales are from migraine and other non-cosmetic uses. 

So as you can see Botox for migraines is a big thing in the Migraine Community. It’s something I have read about often since it has been approved by the FDA and I always read stories about how great it works for people with really bad chronic migraines, such as myself. Although I did not always have daily migraines, I do now and have for quite some time. I think it will be an interesting treatment to try out and something different that will, hopefully, break me free from my chronic daily migraines. 

Where do we go from here?

Who the heck knows! I have a lot of stuff to do over the summer related to my health before the Fall semester begins at the end of August. A lot of doctors appointments, tests, and surgery. So I can only just go day by day down this chronic road I’m on and hope that with each step I take things will get better. I have heard a lot of good things about Botox for migraines so I am looking forward to trying something different. 

Having multiple chronic illnesses is difficult and it’s important to have a support system in place. Friends, family, therapists who can support you through times like this…that I am going through now where basically my full-time job is my health. I have a lot of doctors appointments coming up that I don’t feel comfortable driving home from (like the EEG, the Botox injections and obviously my surgery), so, fortunately, my friend Shelby will drive me or my Boyfriend, Aaron. But that’s why it’s important for those of us with chronic illnesses to have support systems in place as such so that we have a friend or family member to turn to when there’s an appointment coming up and we need a ride. 

But overall, my end goal here in relation to this post is to decrease the number of migraines I have monthly. And if that means sticking a bunch of needles in my head every few months… I’m willing to try it. That’s just where I’m at right now in life. Needles in my head sound better than daily migraines. Let’s do this! 

image description-The only time taking a hammer to your own skull seems like an appropriate solution.png
[image description-The only time taking a hammer to your own skull seems like an appropriate solution]