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.

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.