This is my journey down the path of invisible chronic illness and learning how to self-care. I have interstitial cystitis, chronic migraines, hashimoto's and more. But in between all the chronic illnesses, I have a life…kind of. -Rachel Bob
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 didreduce 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 shotsevery 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.
I know I didn’t post last week that’s because me and the fam (Aaron, Reid and I) were off to Oz! And by that, I mean the Land of Oz in Beech Mountain North Carolina. This is basically my dream come true. I have been obsessed with all things Oz-related since I was in the womb.
A true Ozian through and through
The Wizard of Oz was the first movie I ever loved and watched on repeat. I have multiple editions of the entire Oz book collection, of which there are 14 original books written by L. Frank Baum, most people don’t realize there are so many. The Wizard of Oz is based on the books The Wonderful Wizard of Oz and (loosely) Land of Oz.
And then there’s the Wicked series, of which I have all the books. And I have seen it twice on Broadway. And I’d love to see it again soon. Plus the Dorothy Must Die series only for those hardcore fans …it’s really intense and sheds a whole different perspective on what might have happened (not for children at all, very gruesome and makes Dorothy and all of Oz turn out to be quite evil…gotta love a nice perspective change though)
My house is covered with Oz paraphernalia. Magnets, signs, clothes, cards, dolls. And now I get to share it with my 7-year-old son, Reid. He is learning to love the magic of Oz too. And it’s nice to have someone to share it with. Afterall, The Wizard of Oz is for young and the young at heart.
Here we are Halloween 2017. At Reid’s request, the whole family dressed up as The Wizard of Oz. From left to right: Selena (close family friend) as the Wicked Witch, Me as Dorothy, Fidel (Reid’s Step-Father) as Lion, Reid as Tin Man, Aaron as Scarecrow and Rayni (Reid’s Mom) as Glinda the Good Witch of the North
To Oz?! To Oz! or maybe its North Carolina! Either way…yay!
We drove the long 8 hours to North Carolina. And I would be remiss if I didn’t talk about my health on my blog about my health while discussing this long journey to Oz. Fortunately, I didn’t have to walk the whole way in heels (which is the movie version of course) like Dorothy did just to get to the Emerald City. But nonetheless, the trip which was from Wednesday night to Saturday night left me in bad shape. Just three days, but those three days were jam-packed with stuff to do and fun-filled stress.
We had a ton of fun, the three of us. We did a lot of stuff. We went to local Deaf schools in North Carolina and Tennessee and had the opportunity to visit with family. But that’s a lot for three days. Especially for a Reid, who is 7 years old and has Autism and ADHD. And for me and my litany of health issues. Between the two of us, we were irritable and cranky….well mostly me. But we still managed to have a great trip.
The Land of Oz has very limited days that it is open but I highly recommend it. We went and we did request an interpreter and it was, in fact, their first time working with Deaf clients but with guidance from us, they were able to find an interpreter for us which was awesome and quite accommodating.
A vacay by any other name
Vacations are many things to many people. To some people, a vacation is a time to relax and time to rest. To other people, a vacation is a time to actually go out and do a ton of fun stuff…that makes it feels like you need a vacay from your vacay by the time you get back. Well by the time I got home I had to just lay in bed for days and honestly, I’m still recuperating from it, a week later. By the end of it… my vertigo which is related to my migraines was flaring badly (as well as actual migraines), terrible IC pain, awful PFD flare (pelvic floor dysfunction) and even my throat started hurting dreadfully again (which has generally been under control with antibiotics (until my tonsils are to be removed please see previous posts one this Strep-Gate Part 1 and Strep-Gate Part 2).
At one point, I made the huge mistake of taking Reid swimming in the hotel pool. Which honestly I have avoided pools for a long time because I have read that the chemicals in pools can irritate and anger IC. But I did it anyway. Oh, the mistake I made. Do you ever do something knowing it will probably hurt your body but do it anyway because you think hey maybe it won’t?!?
It was after that that my IC and PFD started flaring up something fierce! The PFD made it difficult to pee in the first place. If you’re unsure what I mean…make a fist squeeze it really tight…that’s kind of how it feels when I (and many other people with PFD) have to pee and then slowly release your fist over the course of 15-30 seconds… isn’t that a nice release? But imagine that happening over a longer period of time… like 30 seconds to 2 minutes. And when I finally can pee it bursts out with the white-hot burning razor blades. I hope that really set up an idea in your mind of what an experience is like going to the bathroom for someone with IC and PFD.
It’s cruel and unusual punishment that our bodies inflict on us. We, as humans, take using the bathroom for granted until you can’t anymore. On the days where I have little to no pain when I use the bathroom, I am so grateful and appreciative of each moment of it. And that could sound silly but you just read what I wrote so maybe you understand what I’m saying just a smidgen. Meanwhile…moving forward with the story to more happier things!
Time for a few pictures!!!!
There’s no place like home…
On the drive home, we saw two beautiful full double rainbows (pictured below). Through Tennessee, to Virginia, we drove through a big thunderstorm…no tornado… But the aftermath of which left us with those beauteous and magical rainbows that filled my heart with so much joy from an otherwise exhausting and painful trip.
Honestly, I wouldn’t trade that trip for anything…although I would have adjusted it some and added time to rest for myself and make sure to do some more self-care during that time. Everyone needs some self-care, some more than others. For those of us with chronic illnesses, we need to be sure to take extra care of ourselves on trips. And then we when get home allow ourselves time to rest and adjust back to life.
Arriving home was just what the doctor ordered. I was so happy to just climb in my bed and lay there for days and days with my 4 cats. A trip to Oz is priceless…to be sure, but knowing in your heart of hearts that there is no place like home…well that’s a lesson, , we all have to learn, like Dorothy did, one way or another.
This blog post is a continuation of Strep-Gate 2018 Part One. Please be sure to read that before reading this one to get the full story.
Heads up- sorry this is a bit long… it was short … until it wasn’t anymore. It has a fun surprise ending that just happened and you’ll see what I mean when you get to the end. So …yay!
When we last left off, Ruth was putting her thinking cap on to figure out the best way to help me through this situation. She didn’t want to just throw more antibiotics at this without knowing what she was dealing with…a fair assessment, I might add. While Ruth does actually have a local DC office, most of our appointments are by phone and she sends me kits for testing samples (i.e. urine kits and now a throat swab). So she sent me a throat swab which meant I had to stop taking antibiotics for at least three days to do the swab.
House would have guessed what happened next correctly but we aren’t House so this is what happened next
What happened next, was not what any of us would have thought would happen next. The throat culture came back and you know what? That Strep Group B I kept talking about recently? It was gone. *dun dun dun* The strep was gone but the pain was worse than ever.
I had E Coli populating my throat. The very same E Coli that has been ever present in my bladder and kidneys since I have been going to see Ruth. So Ruth theorized that E Coli made a home in my throat first and then layered itself off to make a comfy home and then Strep Group B moved in as it’s close neighbor. My immune system is super compromised as it is from E Coli, IC and months upon months of antibiotics. So it made it easy for the Strep to find it’s way, much like the E Coli from my intestinal/genital area up to my throat one way or another- when most other people have an immune system that would protect them from a disaster.
Along with the E Coli, I had another bacteria which ended up being a type of yeast infection. Ruth wanted to make sure to hit them both. So she said she wanted to be sure to prescribe two antibiotics and some kind of oral medication that would get it right to where it needs to be…which makes sense. She said she wanted to talk to a pharmacist friend of hers who works at a compounding pharmacy.
E Coli in the house!!
So now that Ruth knew what we were dealing with she prescribed me two antibiotics and an oral trope to fight off that yeast infection. Because like I was saying…oh yea my body had a massive yeast infection. But we shouldn’t be surprised on that one, should we? It wasn’t just my throat… my whole body was basically overcome with a yeast infection, but the oral trope, which was made at the compounding pharmacy especially for me...so special… was meant to kick the yeast infection in my throat. *pow* And I switched from regular probiotics to ultra-biotics which is a prebiotic and probiotic combo which really helped get rid of the massive body yeast infection.
Meanwhile, the E Coli was just running rampant…Weee! But in a much less fun way.
When it rains it pours for people with chronic illnesses. Sometimes when we think it’s over it just gets worse… and then even worse. And each chronic illness impacts every other chronic illness. That’s just how it is and we never know what will happen to our bodies next. Each day is like a not so fun guessing game…which chronic illness will be messing with me today? …My migraines? My IC? My pelvic floor dysfunction? My asthma? My bronchitis? Or will there be some other new illness to partake in?
So…Where do we go from here?
Nine rounds of antibiotics later, Ruth said maybe I should try a different ENT, so I did. Just a couple days ago. I went to one of the best ENTs in Washington DC, possibly on the East coast. And here’s where we landed…
Tonsils need to be removed.
That’s right, ya’ll. Tonsils… need to get gone. So buh-bye. Honestly, I’m not sure how this didn’t happen much earlier in my life since I have a sordid history with strep throat. But this is where we are at. There was a brief moment where the doctor was like usually people come in with both tonsils infected and need to have them both removed…but you only have issues with one.
Firstly, to that I say…welcome to my life, Doc! When I do things…I do them on my terms! I don’t do them like everyone else. I’m a special snowflake when it comes to my health because I never present my health symptoms like other people. So, of course, it’s just one of my tonsils and I was like … NO NO take them both. I will NOT be having this happen again somewhere down the line.
But Rachel Bob, when’s the surgery???
Oh yeah, good question. Thanks for asking. I haven’t officially scheduled a surgery date as of this blog post. I will be sure to keep you updated on that though, I can tell you it will take place at Georgetown Hospital in Washington DC, which is a really nice hospital so yay for me…I guess. We have some family trips we need to work around and something else came up just yesterday that I have to get under control before I can have surgery. Can you guess what it is?!?!
If you guessed a new chronic illness to partake in…then you guessed correctly, my friend! Because when I do things…I like to go big or go home…honestly I prefer to go home. But I guess sometimes I go big AND go home where I curl up in a ball from being in so much chronic pain and exhaustion and I just cry. Because that’s something people do.
The new chronic illness in town
I went to my primary care doctor last week for my yearly physical, which is kind of a joke because there is so much wrong with me that any time I see her it just becomes a litany of stuff to discuss. In this case, she ran the usual bloodwork that she runs every year. She called me yesterday to let me know that I have hypothyroidism which is an underactive thyroid…or as autocorrect likes to say underachieving thyroid…which isn’t wrong.
This is considered a chronic illness because it has to be maintained and looked after as a chronic condition. It causes chronic fatigue and other crappy symptoms. My doctor prescribed me a medication called Levothroid which replaces or provides more thyroid hormone that is normally produced by the thyroid gland.
But when my doctor called me she brought up how I am pretty unique in that I have been fairly asymptomatic, in that we never would have guessed I had an underactive thyroid. The main telltale symptoms are weight gain, hair loss, fatigue, lethargy and being cold. While I am often fatigued and cold, I always figured it was due to my IC and other chronic illnesses.
So now what?!?!
Good question! Now I have to get my thyroid under control before I can have any kind of surgery. So I need to be on my new thyroid medication for a minimum of 4-6 weeks before I can have my tonsils removed. Go me! And that’s where I am at as of right now…current day. Go team go! …me being the team …of course…
Here is where we wrap up Part two of Strep-Gate 2018.
Have no fear though because all of this mess is to be continued…in a later installment called something like It’s not Strep-Gate It’s I’m overwhelmed with too much stuff-gate 2018 part three !!!!!