Still Chronically Ill…along with the hope of being chronically amazing

It has been much too long since I have posted on here. I think it is time to really get back into it. So much has changed since my last post in January 2019. I don’t even know where I have been. Well…I guess I still have my four cats (crazy cat lady!), and live in the same house with my same partner and… okay well I promise stuff has changed. Like I graduated from grad school and got a job or two. And I picked up a hobby or three.

My time away from my blog has taken me so very far. Alas, I am still quite chronically ill…possibly even more so than before. If that’s possible? Yes… it is lol. It’s impossible to catch anyone up in one post…. so I won’t try. But I will just talk about where my health is at physically. Because I have a new health problem!!! …yay…

Around February/March 2020, right before the coronavirus hit hard, I started having ear problems. I thought initially it was an ear infection in my left ear and then possibly a sinus infection. Left ear symptoms have included ear fullness, tinnitus, hearing loss, ear pain, balance issues, vertigo. I went to an ENT who sent me for a MRI of my left ear. The MRI according to the ENT, my primary doctor and my neurologist was all clear. So generally speaking that’s good… but then what’s wrong with my gosh durn ear?

Well the ENT then told me that the ear pain was most likely related to my chronic migraines and because I have tendency to clench my jaw. I disagreed with him. He actually argued with me about it. He was very rude and talked to me like I have no idea what I am talking about when in fact I have many years experience being chronically ill. And I know my migraines very well, including when I get new symptoms related to my migraines.

I have had chronic vestibular migraines with auras and vestibular vertigo (a different kind of vertigo than what I am experiencing related to the ear issue) since I was 17. And this is not the same thing. I discussed it with my primary doctor and neurologist and both agreed with me, that this ear pain and all it’s symptoms are new and unrelated to my migraines.

My next plan of action was to have a audiogram and balance test. I decided to do it with that same ENT because it was easier during the pandemic than finding a new ENT…or so I thought. Is anything ever that easy? The balance test required me to stop almost all my medications 48 hours before. Medications including: antidepressants, antihistamines (This one I understand), anti-vertigo meds (This one I understand), migraine meds…all of which I take and need to survive. I tried and went into severe withdrawal after 12 hours and was curled up in a fetal position in the dark and just sobbing.

I broke down and took all my meds..It took me another 24 hours to feel normal again. When I called the ENT’s office to discuss the situation they said I couldn’t do the balance test unless I could stop all the meds, even though I still experience balance/vertigo issues while still taking my meds. And when I first went to see the ENT for my initial appointment he did a 2 minute balance test on me and it was horrendous. I left the office literally holding on to the walls because I was so off balance…that continued for the duration of the day.

So after they refused to work with me, I decided to find a new ENT. And I have an appointment to meet with her at the end of August. I have a strong feeling that I have Meniere’s disease and my primary doctor agrees, all my symptoms matches Meniere’s perfectly, so the ENT I will be seeing specializes in balance issues and Meniere’s.

One last comment about the first ENT, when I told him I thought it might be Meniere’s, he shut me down hard and fast. He told me it was impossible because it is so rare. Umm…Hi…I’m queen of the rare illnesses! I don’t appreciate doctors who don’t listen and think they know everything. It says a lot about the medical community that they think they know everything and they don’t listen to their patients. And if I do end up having Meniere’s I will most certainly be calling that ENT to let him know, because that’s just how nice I am ūüôā

And for those who are unfamiliar with Meniere’s disease… it is a chronic illness that affects the inner ear, which is responsible for hearing and balance. Meniere’s symptoms include but are not limited to: vertigo, hearing loss, tinnitus (ringing in the ear), ear pressure. That being said Meniere’s is pretty rare according to ENTs, Neurologists and other doctors. The American Hearing Association says that about 0.2% of the US population have it. But because it is so hard to diagnosis it makes wonder if it’s rare because it is so hard to diagnosis OR because of ENTs like the guy I went to see who refused to even entertain the belief that it could be Meniere’s and told me that it’s related to my migraines when it’s clearly not…I mean with doctor’s like that in our medical system how is anyone supposed to get a proper diagnosis?

As for me… I am a rainbow of chronic illnesses.

OR maybe it’s that they are like Pokemon…gotta catch em all!!! /Sarcasm

But I like to think that not matter what…I am chronically amazing despite how many chronic illnesses I collect. Maybe the more I have the more amazing I am. It’s hard to say right now.

Until next time my friends!

Being chronically ill is like wishing you could have a new bike but instead of getting a new bike you get the plague ...over and over again.

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 TMGSFotography. She 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

A New Diagnosis, Immunotherapy and More

Image description: Hashimoto’s is hard enough without people thinking that I feel fine because I look fine. I NEVER feel fine!

Wow.. it has been WAY too long. This past fall semester at school and in just in life has just been … what’s a good word for it???

Hectic. Relentless. Chaotic. All of that and then some.

So much has happened and I don’t even know where to begin. I’m not sure where I left off. But let’s just pick it up here.¬†

-In July I had my tonsils removed which cured the chronic infections in my throat!  Effectively ending what I unlovingly called Strepgate 2018. (And you can also read Strepgate part two here)  woohoo! One problem down! 

-But then I was diagnosed with Hashimoto’s Thyroiditis. At first, it was just a diagnosis of hypothyroidism and then with further testing, my doctor found that it was, in fact, Hashimoto’s. And for those of you unfamiliar with Hashimoto’s, it is, in fact, an autoimmune disease. **Woohoo my first official autoimmune disease!!! …. yeah… anyways. It’s an autoimmune disease where the immune system attacks the thyroid. I’m pretty asymptomatic and it was caught pretty early on for me, although I am always cold which explains that. So that’s fun…. or something. I have started taking¬†Levothyroxine, starting at 50 MCG and have slowly worked my way up to 88 MCG over the last few months.¬†

But don’t worry I’m not letting this keep me down. I’m still trucking through graduate school like it’s my fulltime job…. because it is. I have one semester left and I basically want to die.¬†

At some point in time, I had botox for my migraines which¬†was insanely painful. It was like 32 needles being jabbed into my head. But totally worth it. Not that it cured my migraines…it didn’t lol. But it did¬†reduce the length and pain level which is saying a lot. And this past Friday, I went for a second round of botox! Yikes, spikes! But my neurologist has assured me that with each round of botox that my migraines should improve even more. So fingers crossed!

And speaking of needles, I began immunotherapy also. But what the heck is immunotherapy!? Well, let me tell you. It’s for allergies. I got in-depth allergy testing done at the beginning of the summer… A lot happened over the summer for me healthwise. Turns out I only have like three allergies…one kind of grass, one kind of tree and cockroach dander lol. BUT because I have asthma and get severe bronchitis every year (without fail). It has been recommended by multiple doctors that I try immunotherapy and hopefully it will improve my asthma and bronchitis issues. And you know what… why the heck not? I will do what it takes to improve my health.¬†

So what does immunotherapy entail? Well, my allergist creates special allergen cocktails for me and I give myself shots every other day for two years! Yep, you read that right. Do not adjust the dial. I had to go to her office once a week for three weeks to get immunotherapy training (re: learn how to give myself shots) But eff that… easy peasy lemon squeezy. I have enough health issues… I’m not queasy about it, unlike my dear boyfriend, Aaron. Poor guy, any time he sees my needless out on he gets sickly looking.¬†

Meanwhile, I just do what I got to do… because who knows..this could do the trick and make all the difference between yearly bronchitis or not! I’m down for it!¬† So I’m here for it… giving myself¬†shots¬†every other day for two years.

-My interstitial cystitis was quiet for a while after I had my tonsils removed but in the last month it has flared up with a vengeance as if it was just waiting for me to think I was in remission and I could pee comfortably for once in the last 4 years. and then BAM! A killer bladder infection. Antibiotics and an antifungal, for a month, because it’s go big or go home over here.¬†

-And I just completed my second to last semester of graduate school, getting my masters in social work, with a 4.0 GPA. It’s not easy being a full-time student, step-mom, cat-mom, and partner to my boyfriend while chronically ill. Next semester is my last semester and I will have a full-time internship, which should be interesting, to say the least.¬† It takes a lot of planning and going day by day.¬† Some days it’s not easy… it’s exhausting, relentless and chaotic.¬†

Until next time… let us all remember that you don’t have to be perfect to be amazing.