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.
In the chronic illness community, there is some debate about whether or not being called a “warrior” is a good thing. This is because a warrior is related to fighting which could mean that one is fighting themselves constantly. And while that is a distinct possibility and there are people who struggle with fighting against themselves and even I do that sometimes…where I fight against my chronic illnesses- leaving myself feeling only worse.
The reason I like being called a warrior is so much more than that. A warrior can do more than just fight against themselves.
Here are some definitions:
1. A brave or experienced or soldier or fighter.
2. Any of a number of standing poses in yoga in which the legs are held apart and the arms are stretched outwards.
3. A person who shows or has shown great vigor, courage or aggressiveness.
I am a warrior because I fight hard to get up and live the best I can each day. The past couple of months since my last post have been hard. I have been completely immersed in my health this past summer. My hypothyroidism, migraines, throat (chronic infections) respectively.
For my underachieving thyroid: Overall things are steady with it right now, so that’s the best news to date. score!
For my migraines: Over the summer I had quite a few different tests to look at my brain and see what is going on in there. I had an EEG (this is like an EKG but for the brain specifically), MRI, MRA, and seeing an ophthalmologist to check and make sure nothing is going wrong with my eyes. The EEG was slightly abnormal so I will be seeing another neurologist who specializes in seizures very soon. And finally, I will be starting botox (for migraines) on September 14th. It’s not botox for wrinkles, promise. Google it. My neurologist has high hopes that it will help my daily chronic migraines lessen. *fingers crossed*
For my throat: I had a tonsillectomy about one month ago on July 26th. And it was really painful, challenging and just all around sucky to heal. Tonsil removal for adults is completely different than it is for kids. Kids heal from tonsil removal in 5-7 days, adults heal in 6-8 weeks. Youth is truly wasted on the young….they just don’t know how good they have it. Plus my healing is slowed down a bit by all my chronic illnesses and jenky immune system.
My boyfriend, Aaron, took great care of me during the first weeks after my surgery. Getting me twice daily Slurpees. But honestly, my throat is somewhat sore and while I’m working my way up to hard foods…after I eat them my throat hurts so badly that the only thing that soothes it is a nice cold Slurpee. So he willingly makes endless Slurpee runs and its amazing.
Too School for Cool
Here are the facts… the new semester began on Monday, August 27th, ya’ll. Just one month after my surgery. Was I ready…well in theory…nope. I began doing some coursework a week before the semester started so as to get a headstart which never hurts for me, especially with my health, I am often falling behind or at least feeling like I am falling behind.
Graduate school is challenging. Not just like this is college so it’s hard, but whole other level hard and I am so fortunate I have survived to make it into my last year. Don’t get me wrong…I love a challenge. School is my favorite thing ever. This is officially my last year…two semesters to go! It’s bittersweet. I want to enjoy my last year but it’s hard as a chronically ill person because can I ever really enjoy anything fully? It’s a different kind of challenge because often I am just trying to get through things as a suffer through health challenge after health challenge.
The important thing is communication with my professors and getting accommodations when possible. Universities and colleges should have an Office for Students with Disabilities (OSWD)that provide students with accommodations. This is not just for students with visible physical disabilities or ADD/ADHD and the like. This can be invisible chronic illnesses as well, as long as they are well documented by a doctor.
My OSWD accommodations include:
* Extension of time on homework provided the extension does not substantially impact the student’s ability to participate in class discussions and activities, threatens the academic integrity of the curriculum or impede the accomplishment of the learning objectives. The student must discuss this accommodation with his/her professors. * Flexibility with regard to attendance. The student shall discuss this accommodation with her instructor in order to ensure that the number of missed classes does not threaten the academic integrity of the curriculum or impede the accomplishment of the learning objectives. * Permission to take brief breaks during class. * Permission to use a laptop during class for the purpose of taking notes. * Instructor to alert student before flashing lights.You might think this accommodation is odd because who flashes the lights in class?!?! But maybe you read my about me page or maybe you will in a minute. But the shortish story is I go to Gallaudet University, the only Deaf Liberal Arts University in the world. Which is just like it sounds, a deaf university where there is no voice talking and while I am not deaf, I am fluent in American Sign Language (ASL) because my grandparents were Deaf. And it just happens that my boyfriend, Aaron is Deaf as well (also convenient after having my tonsils out when I couldn’t speak!). A common practice in the Deaf community to get a group of people’s attention is to flash the lights a couple times but flashing lights triggers my migraines…now that’s unfortunate! Which is why it is in my accommodations. And now you know…and knowledge is power!)
My accommodations are game-changing for me; they make all the difference between passing and failing. I can’t remember if I mentioned it on my blog here before so I don’t know if I have a post to link…but I am on the OSWD Student Advisory Board, going on 2 years now, because that is how much I believe in supporting OSWD and the students who need their accommodations.
So what is a warrior?
Am I constantly fighting something you can’t see? …maybe. I’d like to think of myself as fighting for my life…as normal as possible but also not. I’m not normal…whatever normal is. I get exhausted after unloading and loading the dishes, I can barely carry the laundry basket down to the basement to wash a load of laundry without feeling like my body will give out… but I never stop trying…I never give up. To me…that is a warrior.
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 !!!!!
My throat started hurting pretty innocuously in September 2017. I didn’t take my stock in it because I was busy. I was eyeball deep taking four graduate classes and doing my internship atVoices for a Second Chanceworking with recently released citizens who were either released from the DC Jail or federal prisons around the country. Anyways… I was also focusing on my bladder health. Remember that time I hadinterstitial cystitis..oh right… that was now.
I literally just ignored my throat… probably not the best thing to do but that’s what happened. It wasn’t strep. I thought something was stuck in my throat, that’s what it felt like. you know that feeling when you’re eating popcorn and one of the little pieces goes to the back of your throat, back by the tonsils and just gets lodged back there? It felt like that…at first. There was this sharp pain in this one specific part of my throat that did not feel like strep. I know what strep feels like because I had strep so often growing up that it was basically ingrained in me that when my throat hurt it was strep…but not this time.
This time I didn’t even mention it to anyone, because that’s how unimportant it was or how unimportant I thought it was at the time. And it went on like that for longer than I’d like to admit. When I went for a check-up with my GP, I mentioned my throat had been hurting. So she looked in there but saw nothing and did a throat culture, the first one came back negative but the 3-day culture came back as Strep Group B (make note of this because this is important) Normally, Strep Throat is Type A, that’s the contagious kind. But I had basically had this sore throat for months… and nobody else had it. So my doctor prescribed me a 10 day supply of antibiotics and I seemed to be getting better. Until I wasn’t.
When the 10-day supply was gone the sore throat came right back and unfortunately, it happened on a Friday night and that infection came back with the full force of a thousand burning suns. So I went to Patient First Urgent Care, took my empty antibiotics bottle with me and got a strep test there. Luckily they were nice enough to give me another 10-day supply of antibiotics. And thus began what is now known as Strep-gate 2018.
That time I saw the worse ENT that ever existed
After I went to get my second round of antibiotics at urgent care, my GP referred me to an Ear, Nose & Throat Doctor (ENT). I was glad to go, honestly, because I need to get this taken care of. Before I went I wrote down all the basics of what had happened and when I started taking antibiotics and which antibiotics, I do that sometimes for myself so I don’t forget…it ended up being for the doctor though…
When I walk shown into his room I felt like I was walking into a time warp. I had just walked into an ENT’s office from the 50’s. No joke the room, the chair, the tools were from the 1950s…I wish I had taken a picture. The chair was almost too small for me and I am not a big person…I’m 5’6” and I had to slouch down to put my head on the headrest. Wtf? People were shorter back then… I guess. All his tools were metal. Like the little scope the doctor uses to look in your ear how that’s usually like a hard black plastic… yea… his was metal.
He walks in old as the wind and he is deaf af. And I don’t say this lightly because I live in the Deaf community. My boyfriend, Aaron, is actually Deaf. Our mode of communication is signing. I go to Gallaudet University, where everyone uses sign language. But this guy walks in starts talking to me and I respond in English and he CAN NOT hear me…AT ALL. So I speak louder. I have a lot of experience with hard of hearing people too so I know sometimes speaking louder can help…NOPE.
Nothing…NOTHING I did could make this guy hear me. So I handed him my handwritten note to myself that said everything…. when I started antibiotics/what antibiotics. It was SO terrible. He barely looked in my throat. He said oh you look fine. I’M NOT FINE!!!! wow…so frustrating. He prescribed me some more antibiotics for another 10 days. This time he gave me some antibiotics I never heard of and they ended up being so strong, I took one pill…ONE PILL…and became violently ill. And if we had been able to have a conversation I could have told him that I am extremely sensitive to medications and I would not be able to tolerate that kind of antibiotic.
I will say this by saying this…this doctor might have been a great doctor at one point in his life. But at this point, he is at least 80 years old and should no longer be practicing. He was negligent and in my mind had no clue what he was doing. He barely looked at me. He didn’t have up to date equipment so there is no way he could have properly looked into my throat. Looking back it’s a humorous situation but at the same time, it’s worrisome that he is allowed to still practice.
And now…this awkward moment
So here’s where things get awkward. I hadn’t even mentioned my sore throat to anyone (except my friend Shelby but I didn’t even tell her until it was almost time for me to go to the doctor), not even my boyfriend, Aaron. So when I came home and told him that I had this strep throat situation going on and that my throat had actually been hurting for months… needless to say he was baffled and rightly so.
How many of us chronically ill people don’t mention a new symptom or ailment to close friends and family because we don’t want to worry them? Honestly, I thought it was nothing for quite some time, so I didn’t equate my throat hurting with my chronic illnesses and therefore, in my mind, there was nothing to tell. But I learned a valuable lesson in this situation… there’s always something to tell, even if it seems like nothing.
Strep-Gate 2018 Begins
So just to back up for a second here, unless you read myprevious blog postlike a minute ago, you might not remember this, but up until this point I had already been on antibiotics for about 7 months for various other reasons such as UTIs, bladder/kidney infections, and bronchitis. So yay being on even more antibiotics!
So by now, I was now on my second round of antibiotics for my Strep Throat Group B. And I was miffed. I realized my strep wasn’t contagious and I needed to slow down a minute and research this. Let’s look into this a bit deeper, shall we?
The Mayo Clinic says that “Group B strep is a common bacteria often carried in your intestines or lower genital tract and that it’s usually harmless in adults.” Oh okay, so that makes complete and utter nonsense!
What in the actual hell? Okay so Strep Group B is a type of strep that is noncontagious except between mother and newborn baby, but somehow it probably went from my lady parts to my throat. There are two possible ways that could have happened. 1. Through sexual intercourse. 2. My body’s immune system is so jacked that an infection such as that decided it wasn’t happy in just one place warm comfy place and wanted a new warm comfy hidey hole of a place to cozy up. Personally, I think it was the second one because of what happens soon after this with all my dear longtime friend, E Coli, that will soon be making a reappearance.
After I went to Patient First, I called up Ruth Kriz, my IC specialist extraordinaire. I have been working with Ruth for about a year now on my IC. She has a holistic and medical approach to the body which I appreciate greatly because I don’t believe my personal situation can improve with just medical interventions or just holistic interventions. I like Ruth’s approach. She is a nurse practitioner who does in-depth cultures that most doctors don’t do. So while my (hack of a) urologist does the most basic urine culture to test for a UTI, Ruth sends off my sample to a lab that does a urine broth culture that really looks at the sample deeply and does three different levels of testings, instead of just one. And normally throats are not exactly her forte but I called her up and told her what was happening.
She literally said to me, “I hear what you are saying but I don’t know how you think I can help you, darling, I don’t specialize in throats or strep throat.” I laughed and I said, Ruth, please hear me out, you are the only person who can help me. The strep test results that I got back said I have Strep Group B, which is usually only found in the vagina! Which is why I haven’t been spreading this strep around town. She immediately got what I was saying, how in the heck did this strep that belonged in my lady parts get into my throat?!
She put her thinking cap on. And let me tell you friends, there is nothing better than knowing you have a doctor or practitioner is on your side. Ruth is that person for me. She is always on my side right there believing me when I tell her my symptoms.
Chronically ill people so often get brushed off, not believed and not heard. I’ve had that happen to me with my urologist who (unfortunately) specializes in IC. My urologist was a woman as well…Women who are stereotypically more caring and empathetic…she …was not. In a profession that is still heavily dominated by men, it can be incredibly hard to find a urologist that really listens to you. So when you find a female urologist that specializes in your chronic illness you kind of think *jackpot*!!! Except, in this case, it was more like … jack..not…womp womp.
I’m going to end Strep Gate 2018 here. But have no fear there is a Part two! So be on the lookout for that next week.