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
I have literally abandoned my blog. How sad is that? And it is not because I am feeling all better because I am most certainly not. If anything all my health stuff just keeps getting more complicated and worse even.
But I have been insanely busy in grad school. Grad school with my internship has kept me just crazy busy. I missed my blog. And so I’m trying to come back and post again because I miss the community here and I miss having a place to discuss the issues in my life.
As of right now my biggest health issue is strep throat type B (read- noncontagious). Yea, I have had it for almost 5 months. It started last fall semester, around September, I had a sharp constant pain in my throat, not all over but in on specific area are on the right side where my gland/tonsil-ish is. At first, I thought it was something stuck in my throat, a chip…maybe? You know how that can happen… And I didn’t mention it to anyone right away. Not even Aaron, because I didn’t want him to be concerned about something that seemed not so important. I did eventually mention it to my friend Shelby but it didn’t seem like a huge thing. And time went on…
Somehow I went through most of the semester like that. I could barely eat hard or crunchy foods. My throat hurt constantly. Finally, (and don’t judge…okay fine maybe a little but let me explain.) When I went to see my primary care doctor (PCP) in November I mentioned it to her. And she did a throat swab but held off on giving me antibiotics because I’ve been on antibiotics for months at this point for back to back to back to back bladder and kidney infections.
So the throat culture comes back a couple days later positive for strep. Oh snap…I’ve had strep for a long time. But I’m a grad student with a family and other health demands so my throat was not my top priority for whatever reason. In hindsight, I regret that.
So far, I’ve been through two rounds of antibiotics and it’s still very much there. I have an appointment with an ENT tomorrow so I will hopefully find out what is going on in my throat. But again, this is noncontagious strep so it’s not like I was giving strep to everyone I met…because I wasn’t. So it just wasn’t that easy to identify. As a child, I always had strep throat so I know what strep feels like and this wasn’t/isn’t it.
My IC symptoms are still going strong. I’m in between antibiotics right now. But I’ve been on them for a long time. I generally only feel better while on antibiotics which is sad.
My third semester of grad school which was the fall 2017 semester was incredibly stressful for a variety of reasons, including my internship. Well, that reason includes…it’s grad school and that’s enough reason. I took 4 classes plus my internship. And now it’s the Spring 2018 semester and again I am taking 4 classes and my internship. I have one year left of my program because I am in a 3-year program.
I will leave it here for now. But I plan to be back after I have results from the ENT.
Hope everyone out there has been well while I’ve been MIA. Take care and talk soon!
Okay…so I’ve kind of dropped the ball here. But it’s summer… that’s the excuse I’m going with. I’ve been busy with a kid and packing. First I’ve been super busy on the mommy train…just daily entertaining and dealing with Reid as best as I have been able to. My first week off of mommy duty which was the past week and I have literally spent the entire week from the time I woke up at 8 am until midnight packing.
Packing??? What for? To move. Yea that’s right I said it. I’m moving. Don’t worry I’m not going to far…not even out of state. But nonetheless here I go. Aaron and I are moving in together. We have been searching for a place to live for the past few months. We found a house.
All of this on top of my health… has been … eventful. I’ve been on and off antibiotics for my IC. Currently, I am off of them. Which always makes me feel extra crappy and kind of like I am getting a kidney infection so I am waiting for my urine broth culture results to come back.
And my doctor increased my Topamax, which is my migraine prevention medication because the visual auras flashing in my eyes has been getting out of control. The biggest issue is the side effects of this medication include problems with memory and struggling with word comprehension…and yes those side effects do impact me quite a bit. I love it…./sarcasm.
But hey…we are moving! To a house just outside of Washington DC, still in Maryland. It’s about 20 minutes from Gallaudet so it will be an easy commute for me to get to school. It’s a four bedroom house, with a basement, a screened in porch, backyard, fireplace (which we won’t use because of my asthma and bronchitis). And the biggest and best advantage is its 5 minutes away from Reid’s mom and her boyfriend. We wanted to find a house that was as close to Reid’s mom as possible. And we did! Just a few streets over. The house is everything we were searching for.
I realize it’s a bit out of the norm trying to move closer to your child’s other parent. Usually, people want to escape their ex. And maybe for awhile, they did. But now it’s all changed. The four of us, work together to parent Reid. We constantly tell him that he has four parents who love him so much. We do monthly family dinners and see each other often. And now we will live within walking distance so Reid can have a closer relationship with all of us.
I am excited about all of this. Moving in with Aaron is huge. I never thought I would end up in a long term relationship. And now I’m moving in with Aaron and we have a family. Me, Aaron, Reid and my four awesome cats (Blinken, Stanley, Marzipan, and Ziggy).
Getting packed up is difficult for me for a few reasons. Firstly, I have a lot to pack up…but who doesn’t…amiright?! Secondly, having chronic illness defintely makes packing more of a challenge. I tire more easily and feel weary. I need to be careful that I don’t overwork myself or I could make myself sick. So I take frequent breaks to rest and sometimes I have to just move slower than the average person. I started packing awhile ago so I would have more time to pack up and get ready.
I’m going to work on keeping this blog better updated while packing and moving even if it means shorter posts.
I have a few pictures to share. The first is from a wedding of a good friend of mine that Aaron and I went to recently. I just thought the picture looked cute because we were all matchy and adorable. And I forgot what it feels like to put on dramatic makeup…purple eyeshadow with a dark eyeliner and what not. It’s been a really long time…not to mention heels. Wow… I forgot how much heels suck. lol. I haven’t worn heels at least since I injured my ankle a couple years ago. But luckily my ankle was fine.
I guess I wanted to show this picture, because as I always like to emphasis as someone with invisible chronic illnesses…it can be difficult to tell that I am in pain and chronically ill. I clean up really well and people don’t realize how much pain I’m in when I’m standing there smiling like this.
And the next picture I wanted to share is just a nice pic of me, Reid and a starfish at the Baltimore aquarium. We had a lot of fun along with my best friend Shelby. One thing that I would like to say is that I am always honest with Reid about my pain. He might not know all the exact details of my pain and illnesses but he knows I have pain and that I am sick and he can tell when I am in pain. So he knew walking around the aquarium was hard for me, but I wanted to take him because we had been talking about going for awhile. He knew that we would take frequent rest breaks and bathroom breaks.
This picture doesn’t display the amount of pain I was in or the fact that I had just taken a bunch of ibuprofen and tramadol to get me through. But it does show how much fun we were having regardless of my pain.
And last picture below is our soon to be home as of August 4th. There’s no place like home. 🌈😍
Things have been rough. First of all, it’s becoming clear to me that I have no idea how to rest. But I have been reading a ton…so I guess that counts as resting…but I’m sure there has to be more to it. I’m just not sure what else there is. I have to remembermy resolution of self-careand why it’s important. But it’s difficult to keep in mind.
I have been in so much pain as of late.I have been on two antibiotics (minocycline and nitrofurantoin) but ever since I stopped the Bactrim a few days ago I have been in just ridiculous pain. It’s like I can feel the infections in my bladder just bubbling away, leaving me in a ridiculous amount of pain 24/7. Now I’ve finished the minocycline and stopped the nitrofurantoin and just yesterday have started a new one, clindamyocin…it’s super harsh on my stomach. And makes me feel awful because it is so strong.
Unsurprisingly, I have had a yeast infection due to all the antibiotics. So I got a 30 day Rx for Diflucan while I’m taking, even more, antibiotics…yay… And soon I will be retesting my urine to see what other (if any) bacteria might be in my bladder still. As well, Aaron will be getting tested this time around. He was recently given a round of antibiotics but it seems like a good idea to test him too just to be sure there is nothing there that he can give to me.
So on top of that pain in my bladder, there was one day last week that was a really rough day. I was informed that morning by my internship that I needed to go pick up a form for a urine drug test that same day. So I had to hustle down to the Department of Corrections (DOC) in DC to pick up this form which was only being held for me that day. The place was huge…as far as prisons go. And I got lost…of course. I was worried I would be late picking up Reid from school. I finally found where I was supposed to go and I got my form and it said I was supposed to go straight to the clinic. Crap! I didn’t have time for that nonsense. So I had been texting Aaron throughout this…and I said “Mother fucker! They said I have to go straight to the clinic!”
You know that moment when you realized you sent a text to the wrong person and your stomach drops to your feet and you are like holy fucking shit what did I just do?! All you want to do is just crawl 6 feet into the ground and never come out again. That happened…Because that text I sent to Aaron, I actually sent to my internship supervisor. Yep..that happened lol. Fortunately, my internship supervisor was really cool about it. I apologized for being inappropriate and sending that. She said girl stop trippin..I’ve heard worse. Oh thank goodness! And of course she has..she works with prisoners. I explained I had to go pick up my step-son from school and going straight to the clinic wasn’t really an option and she said that I could go for the urine test the next day. Sigh of relief.
Even still, the stress of, getting lost and thinking I was going to be late to pick up Reid and then texting the wrong person was more than enough to get an instant mega migraine. Not a fun situation. Eventually, it subsided with a lot of migraine meds.
Since I’ve been on summer break, I’ve been spending a lot of time with Reid…picking him up after school every day. Most of the time I think of how lucky I am to have such a beautiful family. A supportive partner like Aaron is hard to come by. A loving adorable step-child like Reid who I have bonded with is something I never knew I could want. As well as Reid’s mom and her partner, I like to think of us as a parenting unit..the four of us work together to care for Reid and provide him the best support possible. And I can’t imagine my life without them now. But there are just some days when my health is particularly perilous that I want to run and hide because Reid never stops talking and singing. He just never stops.
And now I can’t imagine my life without Aaron and Reid. But there are just some days when my health is particularly perilous that I want to run and hide because Reid never stops talking and singing. He just never stops. It’s always go go go with him.
Having chronic illness(es) is fucking hard and having a child is fucking hard…but put them together and it’s a whole other level of difficulty that is nearly impossible to describe. Especially when that child is Reid, who is more than a handful. But don’t get me wrong…I love this child so much. And sometimes he does things and I have to wonder how he isn’t part my child too. He has picked up some of my mannerisms, but not just that…he is super sensitive like me. That’s not something he copied from me though, that’s just who he is…loud noises, bright lights, strong fragrances are an issue for him…just like they are an issue for me.
But anyways, being a parent with a chronic illness is very challenging. Every day I have to decide…do I feel so terribly that I’m just going to turn on the tv for him so that I can go lay down and rest? Or would I rather forgo rest and try to get him to play or do an activity book? And he does know about my chronic illnesses…not all the exact details. But I’ve explained my IC and migraines to him in a way that he can understand. He also is very perceptive and he can tell when I’m in pain and don’t feel good.
When I can’t do things with him because I am in too much pain and I can see how upset he is, it breaks my heart. Or when he helps me with things that I should be able to do myself but struggle with because of my pain. He is very sensitive to my pain and doesn’t seem to mind helping me when needed. He always wants to kiss my pain and make it better, which is incredibly sweet. For a long time, I was working towards the goal of being able to walk long distances again without exhausting myself to be able to take him to the aquarium. We haven’t done that just yet but we plan to take him soon.
For a long time, I have been working towards the goal of being able to walk long distances again without exhausting myself to be able to take him to the aquarium. We haven’t done that just yet but we plan to take him soon.
A couple months ago we did a family photo shoot with Tiffany at TMGS fotography. This was more than just a photo shoot, it was a whole experience that we had. We went to the National Arboretum, we ran around and climbed trees. It was a lot of fun. I would like to share some of the pictures from that.
And here are some pictures with Aaron as well…
But anyways…I love these pictures…This isn’t all of them. But we can also talk about how life looks so perfect in pictures. But I can tell you it is most certainly not. These pictures are the product of makeup, photoshop, and the sunshine. But afterward, I felt the pain of it all. All the climbing trees and stress of the fun of taking pictures. It’s easy for people to think a chronically ill person is just fine because they post some pretty pictures on facebook. But the reality is…sometimes we just like to feel normal…even if it’s just for a couple hours.
They say laughter is the best medicine…. but is it? Because recently, I’ve been in a lot of pain. I thought something was wrong with my right kidney. Went for a renal ultrasound last Monday and finally got the call yesterday saying nothing was wrong. Along with a serious attitude from my urologist. Gee…thanks. I hate my (now ex) urologist.
Help wanted: New urologist who is nice and caring. Believes me when I say sometimes is wrong. Believes me when I say I have layered infections and doesn’t scoff at me when I tell her about my new IC practitioner who they have never heard of.
Meanwhile, back with my IC practitioner who cares, Ruth…she got the results of my pathogenius urine culture. It was … colorful, to say the least. They found not 1…not 2… not 3…but 7 bacterias. Yes, friend, I said seven. Remember when I had E. Coli? Well, the E. Coli went away and then underneath of that there were 7 more delightful infections.
36% Lactobaacillus johsonii -This is a healthy bacteria for your gut and has zero business being in the bladder.
31% Ureaplasma urealyticum – This is very commonly found in IC patients. The number was probably higher but I was recently on the antibiotic azithromycin (also known as zpack) for Bronchitis which is often used to treat ureaplasma. The ureaplasma can be carried and given back and forth by sexual partners. So in this situation, Aaron will have to be treated as well. That does not mean for sure he has it but really to prevent me from getting it again, he will be on a short-term (one week) dose of antibiotics.
So last week Ruth prescribed me more Bactrim to help me out until she could see what infections I had. And as we can see listed above…I have a lot. I will finish out my two-week dose of Bactrim and also she is starting me on two more antibiotics: minocycline and nitrofurantoin. I really don’t relish this process. Being on all these antibiotics isn’t great… but neither is being in so much pain from all these infections. I asked if it was possible that any of the infections could have traveled to my kidney. She said that was very possible.
Here’s the thing. My urologist…did a renal ultrasound and the most basic urine culture ever and found nothing. nada. zip. zilch. She made me feel like shit about myself. If I didn’t have Ruth on my side… I would have felt hopeless. I knew the pathogenius urine culture ordered by Ruth would show results…I didn’t realize how many results… but I knew it would.
There are so many IC patients and patients who have chronic illnesses who are treated so terribly by the medical community. It’s just not right.
Our doctors who took an oath to first do no harm…but my urologist did harm. She looked at me like I was insane when I told her what was going on. She made me feel less than.
But I am not less than. I know my body and I know when something is wrong. And I know I am not alone in matters like this. This happens far too often. It’s really just unfair…more than unfair. It’s ridiculous. Ruth said something akin to I’d like to give these doctors IC for awhile and see how fast they end up in the ER from all the pain. They have no clue what it’s like to be in so much pain and for us to look to them for help only to be brutally rebuffed time and time again. We don’t deserve that. We deserve to be heard. Because what would have happened if I didn’t have Ruth on my side? My urologist would have just been like.. well nothing in your urine and nothing in your kidney…See ya next time. And I would have been sitting here unaware that I have 7 infections and nobody to help me. Which is such a bummer to think about. So let’s not.
So on a completely different note… I had to get a TB test formy recently acquired internship…so the good news is… I don’t have TB. I am, however, still riddled with other diseases…womp womp lol.
And I’m on summer vacation. It’s …. yeah. weird. I have nothing to do. I’m not used to not working. I feel very useless. I’ve been reading. I have a nice mix of novels and social work type books related to my specialty that I am working on. But yea…besides that I have been going to a lot of doctor’s appointments, picking up Reid from school, hanging out with my cats 💗, ummm… watching stuff on Netflix. I really miss working right about now.
So is laughter the best medicine? For a lot of things…but not for infections. But I do often lean on laughter and humor to get through hard times. I’ve always said laugh or cry. Jews often use humor to get through hard times…that’s just how we Jew it. And I think that’s why I often use theSomeecardsin my blog posts because they make a great point and they are funny. And I shall leave you with this…
I am finally done with my second semester of grad school! huzzah! But alas… even good things don’t always end on a good note. This past Thursday, the day of my last final exam, I woke up to a terrible pain when I went to the bathroom….a pain that was not my usual IC pain. It was a kidney pain. The pain continued all day every time I went to the bathroom or coughed very hard…because once again I have bronchitis. So I decided to do two things… email Ruth (my IC practitioner) to let her know what was happening and make an urgent appointment with my urologist.
Bright and early the next morning I went to see my urologist, who I have since decided I do not like and I will be looking for a new one. the best thing she did for me was to order a renal sonogram. She got an attitude with me because she didn’t know who Ruth Kriz- IC practitioner- was. And she did not believe me when I mentioned the possibility of a possible layer of infections because she never heard of such a thing. Well, Doctor…if that is your real name…I think it’s time you start doing some extra studying in your spare time because… yeah it’s a thing.
And then Friday afternoon I went to see my gynecologist just to be sure it wasn’t an ovary. She did an internal ultrasound but found nothing. Monday, I went for the renal ultrasound. Which was pure hell on earth. I had to drink 32oz of water an hour before I went. And then I had to wait for them to see me another hour. So I had to hold it for 2 hours…it was torture. And it got worse when they started pressing my bladder with the ultrasound doodad (yes that’s the technical term). Now I await the results.
But I am on antibiotics that Ruth prescribed me, Bactrim. To recap…I was on two weeks of antibiotics for E. Coli. And then I was one a week of antibiotics (Zpack) for bronchitis, which I just finished on Saturday. And then started another round of Bactrim yesterday. Just wonderful … *insert sarcastic disgruntled face here*
So yea I’m in pain. But on the plus side, I am finished my second semester. And on the more plus-er side…this morning I had an internship interview with an organization called Voices for a Second Chance (VSC) which is an organization that provides a safety net of sorts for offenders and their families who are likely to be among the most marginalized members of our society. They provide services to inmates and their families to keep them connected, as well as reintegration into the community upon release….among other services.
If you know me, then you know this kind of internship is perfect for me. I volunteer with an organization called Helping Educate to Advance the Rights of the Deaf (HEARD), which works with Deaf inmates who have been wrongly convicted, are not being provided appropriate services and much more. And I just took a Forensic Social Work class at George Mason which is directly applicable to this internship.
But even still, I went into this interview quite nervous…just ask Aaron…he was just like like omg be cool! But I get very nervous and it’s hard for me for me to keep calm. Jews are natural worriers. fact.
But like a girl scout…I am always prepared. I went with a notebook with questions to ask and notes I took from their website #nerdlife They loved my connections to HEARD…VSC is a DC-based organization and I explained I go to Jessup Correctional Facility in Maryland to talk with Deaf inmates because they have a Deaf population there. And they asked me how they could get into Jessup, so I offered to give them a point of contact.
They also said they have asked the DC prison if they have any Deaf inmates but the DC prison always responds with IDK which is about right…Prisons don’t keep records of that kind of stuff, which is ridiculous. But luckily I have access to the HEARD database so I said I could check out the database to see if there are any Deaf inmates in the DC prison. They loved that.
I’m already become an asset to them…it’s a good feeling.
So yeah, they offered me the internship right then and there..and it was awesome! And for the first time in quite awhile, I am feeling happy. Granted everything still hurts… but I’m just happy because this internship will be an amazing experience for me. And when they were printing out paperwork for me to fill out…I went ahead and I hit it out of the park by asking “do you have any book recommendations that I should read to help me better prep for this internship?” That was a genuine question…I wasn’t just asking to get in their good graces. I love reading. A couple of the books they recommended I already read🤓
I do worry how it will impact my health… It will be a very emotionally challenging job which will probably stress me out. Plus I will be taking four classes. But I am up for it. I have the summer to rest and heal. And I do have plenty of healing to do…that’s for sure. But at least I have the time to do so.
I haven’t told them about my health yet. I worry about coming out to them about it. Although I don’t think it will impact their view of me…as social workers, they are just more understanding and empathetic. I’ve come out to so many people recently, it really shouldn’t even be an issue. But I worry that they will think that my health will impact my job. I know I won’t be able to hide it forever. That at some point…something will pop up. like a migraine or they will notice the frequency in which I use the bathroom. I just want them to know me first and understand what a motivated and passionate person I am …and I just happen to be chronically ill as well.
My IC and migraines have a huge impact on me. I really don’t want them to ruin my internship. So I really plan on working hard on resting this summer lol…yes…working hard to rest. I’ve never done that before. But I will attempt to do so. I have a reading list. Books I want to read…a mixture of novels and social work type books. I will relax damn it or else!! That’s how people relax…right? lol
I finally got over that terrible stomach virusand started my antibiotics (Bactrim) on Wednesday, April 12th. It has not been without issue though. I am a very sensitive being and I do get all the best side effects…. nausea, stomach aches, mild diarrhea. You know all the stuff I just had when I had that stomach virus… sigh. And I’m sure the side effects are worse now because I literally just had that virus too and barely had time to recover from it before I started the antibiotics.
Needless to say, the last two weeks has thrown my Ketodiet (I am still on the IC diet though) out the window with a vengeance. When the stomach virus hit me…I immediately started on sick food: saltines, ginger ale, homemade chicken soup, bananas, applesauce and the like.
I have now been on the Bactrim for 5 days…have I noticed a difference in my bladder??? Sometimes… sometimes I don’t. So it’s hard to tell. But I am only 5 days into a 2 week round of antibiotics. Only time will tell…Ruth tells me I should notice a difference but maybe it’s just hard to tell because of all the side effects I’m having.
I know the Bactrim will take care of the E. Coli… but who knows what else is in there. Ruth thinks there is another infection underneath the E. Coli. And I will be doing a test for Lyme’s Disease, which is from a tick bite…the test is called iSpot…it’s a blood test. I’ll be getting the blood drawn for that in May because I need to be off antibiotics for at least two weeks before they can test the blood.
It’s difficult for me to plan my summer when I’m so unsure where my health will leave me a month…let alone next week. But I will say this… I will plan on resting as much as possible this summer. Not pushing myself too much or doing too much. I will start an exercise routine that isn’t too strenuous and that my physical therapist, Jen, will help me to plan out so that I don’t hurt myself further. I used to do yoga almost daily before I was diagnosed with IC. But once the IC got really bad it just became too painful to continue doing. So we shall see what happens…..
In others news…My physical therapist and I decided to take a break from pelvic floor therapy (PFT) while I am on antibiotics to see if there was any noticeable difference because it would be difficult to tell what improvements are happening if I am also doing PT. So instead we decided to work on my migraines… I actually just got back from that a little while ago.
I will tell you this… I prefer the PFT, which sounds insane…because that’s internal PT that hurts so much. But this PT was like nothing I’ve ever experienced. I have trigger points all up and down my shoulders, neck, and head. Well…of course I do! Because I have chronic migraines…Duh! At one point she was pressing on a spot on my shoulder and it hurt so incredibly badly that I could feel it up in my temple. But she said that was a good thing because it meant that it was something we could work on… I was like…oh good…
Of course, it’s good. I know it is. But wow…I just did not expect it to hurt so incredibly much. It was just beyond brutal in ways that I can’t describe. It left me dizzy and disoriented. Luckily I don’t drive myself to PT…I always take Uber. My entire head, neck, and shoulders hurt… just like any other PT session.
Also, I have increased my Topamax (aka dopamax), which is a migraine preventative, to the max dose- 100mg/daily. Which, of course, comes with its own side effects. Nothing is without side effects these days. Side effects like feeling dopey…hence the name dopamax. Forgetfulness, issues with word recall and understanding words…which is great to have when you’re in grad school. I don’t need words to write papers…nah. That’s silly. /sarcasm.
This semester can’t be over soon enough…Just two weeks left of this semester… I can and will get through this. This has been the hardest most frustrating semester I have ever experienced. I am not sure I will get through it with my sanity intact but as long as I get through it… that’s the best I can ask for at this point. I have a ton of school work to get done so I probably won’t write any new blog posts until the semester is over… but I’m sure you understand 🙂 xx
The last two weeks have been rough. Reid, Aaron and I have been varying degrees of sick with a terrible stomach virus. It hit the two of them first and took me down last and hardest. Save the best for last??? ehhhh…. I spent this whole week in bed. Now I’m finally up and about. Trying to get back to life…No easy feat.
Seriously as if things aren’t hard enough… life seems to want to kick me when I am already down. And I just keep thinking…I couldn’t make this stuff up if I tried. It is all just so ridiculous that it has to be true… because nobody has all the nonstop issues that I have had over the last two years…not just health, but also related to my family and other relationships. Not to say everything is always terrible … but I’m just saying..kick me while I’m down why don’t you…sheesh.
First of all, I have been seeing a new practitioner named Ruth Kriz who is known in the IC community. You can google her if you want to know more about her but I found out that she is local to the DC area and felt that it was a sign that I should go see her. Ruth’s theory is that IC is a deeply embedded infection or infections in the bladder wall; coupled with other health issues. I originally saw her last month for my initial appointment. I then had to get a ton of blood work and urine work done.
So I actually saw Ruth this past Tuesday, where she gave me the results of my lab work. It turns out I have E. Coli in my bladder. Embedded infection anyone??? mhm. I also have Mycoplasma pneumoniae, which is another kind of bacteria and it could be because I recently had bronchitisor can be related to the IC. Either way, Ruth is treating both. She is treating the E. Coli with the antibiotic, Bactrim and the mycoplasma with a herbal remedy called A-Myco.
I am also deficient in Vitamin D, which isn’t surprising since my mom is as well. But Ruth said it is very common for IC patients to be Vitamin D deficient and that is bad because vitamin D helps us repair our body and heal our immune systems. So I will be starting on 5000mg supplement of Vitamin D.
So…like I said I saw Ruth on Tuesday. After I left her on Tuesday I went to meet Reid at the bus stop and suddenly wasn’t feeling well. It hit me hard and fast..the stomach bug. I was freezing cold down to my bones but I was so hot I was sweating. Never a good sign. It was all downhill from there. Before any stomach stuff hit me, the fever hit me first. Unfortunately, I have had to postpone the start of all my new meds because of this stomach bug.
I do think I had it the worst of the three of us because my body is already compromised from the E. Coli and other health problems. There was a day in there where my fever was slightly above 100 and I struggled to keep it down. It was beyond miserable for me… Neither Aaron or Reid had a fever, but they didn’t have infections to fight off like I did.
Having this stomach virus didn’t do my health any favors as well..that’s for sure. I had physical therapy today. I didn’t go last week…because..well…sick. And I was so tight…All over. It was just insanely painful..in a whole other way than usual the usual painful.
Not just because of the stomach virus but because of my health, in general, this has been a very difficult semester for me. I have really struggled to keep up with my work. At this point, I feel very behind. I keep all my professors in the know about what is going on with my health and they are all very understanding and flexible with the due dates for my assignments…which is great and super helpful for me. But at the same time…it feels like failing. This is just for me personally. I would never judge another person who needed more time on assignments… I, of course, am much harder on myself than I am on others.
I am a perfectionist and an overachiever. I love school so much that I like to say that I’mtoo school for cool instead of too cool for school. Being behind and struggling like this feels like a failure on my part. Somewhere in my brain, I can hear my logical self saying don’t be silly this isn’t your fault you are doing the best you can. But in my heart, I just feel heavy and disappointed that I let it get to this point. I am that student who finishes all the work first…almost annoyingly early. That’s me. And now I’m struggling to even get my work done at all. Nobody is faulting me for it. Even my academic advisor is on my side, supporting me through this. It’s just hard to feel like I am failing when normally I wouldn’t be.
It’s yet another part of me that I have lost…along with everything else. This summer I have to rest and take care of myself because in the fall/spring I will be doing an internship and taking classes. I need to be okay enough to do all of that.
I have no idea what will happen once I start the antibiotics for the E. Coli. I don’t think that will magically cure me…I’m not that deluded. Besides, I probably have another infection underneath of that one. But I am curious to see where this road will lead me…Hopefully to one of better health- physical, mental, and emotional. I look forward to it… and to the possibilities the lay ahead. You know what they say….
I have been flying under the radar the past couple weeks. I’ve just been feeling very uninspired to write. It’s not that I have had nothing to say…I have plenty to say. I guess it was more that I was feeling very overwhelmed and emotional. I’ve noticed that since I stopped taking birth control February 25th, I have just been a hot mess…more than usual.
Some people have asked me why the hell would you stop taking birth control?! Take a chill pill ya’ll. I’m not trying to get pregnant….you know I don’t want kids. I have my reasons.
This was not an uninformed random decision. I was on birth control for 16 years, from the age of 15. I had the worst periods ever. Every month I would miss a full week of school…sounds awesome right?!?! Wrong! I would have a fever, vomiting, debilitating cramps so bad that I could barely walk and heavy bleeding for seven days exactly. And then, my doctor put me on birth control to help that and it helped so much. My periods became more manageable and less painful.
And for the last five years, I have been taking continuous birth control…meaning no periods. I had a sweet blissful no period life. It was amazing. I never missed them. Not once. Never. I do have the mindset that…why should I be punished for not being pregnant? I am not one of those people who likes getting a period to know I’m not pregnant…I’d rather skip it and just be happy without it. Like I have been for the last five years.
I love birth control…it’s my friend. I miss it a lot. I thought about stopping it for months before I went through with it. Because I started feeling concerned about how it might be impacting my health… I had been hearing a lot of stories about women with chronic illnesses having issues that seemed to be exacerbated by birth control. So it was on my brain.
I have to take care of myself. That’s my resolution…self-care. Even if that means stopping birth control for now, for awhile or for always… I have to do what is best for my health. period. (ha…punny)
A month ago, I went to see my gynecologist for my annual (something all of us who have a uterus just love), and I discussed it with her because I was on the fence about it. But then another reason I should stop it came to light. Somehow we started talking about my migraines. She asked if I have visual auras…why yes, yes I do. She said okay well then you have to stop taking it. Apparently, if you take the estrogen pill and have migraines with visual auras, there is an increased risk of stroke. I didn’t always have visual auras. I have had migraines since I was 18, so for 13 years, but the auras started just a couple years ago. My gyno said there’s your decision.
I threw out all my pills and have been birth control free since then.
My gyno did tell me that if in a couple months I decide getting off birth control didn’t help and I want to get back on then she will prescribe me a progesterone pill instead of the estrogen because of the migraine/stroke situation.
My friend, Shelby, told me about Evening Primrose Oil– which is a supplement that can help balance hormones and ease symptoms of PMS and menopause, among other things. So I started taking that in hopes that it might help. But being the sensitive gal that I am, I prefer to start at a low dose and work my way up. I started at one 500mg capsule daily and slowly I have worked my way up to one 500mg capsule three times a day.
And I surprisingly got my period almost exactly one month after I stopped the pill. This surprised me because I don’t think of my body as healthy enough to have a period. But just because I have one now does not mean I will have on regularly. So we shall see what happens going forward.
Since stopping the pill, I have noticed a reduction of IC symptoms and an increase in migraine symptoms. I have had less burning and general flaring in my bladder, although that was mostly when I was PMSing and on my actual period. So it’s possible that my body couldn’t focus on both my period and my IC at the same time and just had to pick one.
I think it’s really interesting that my IC symptoms have lessened. Will it last? I have no idea. It is way too early to tell. And my physical therapist agreed with me that it’s possible my body just decided to focus more on the pain of my period because that was more painful and shocking than my IC pain at this point in time. After all, I’ve gone five years without a period…but I’ve had IC pain for two years straight. So my body was probably just like…ugh sick of this pain let’s focus on this pain now!
The migraines have steadily been getting worse, along with my visual auras. Birth control plays a huge role in migraines and can even cause migraines. But it seems all the fluctuations in my hormones is really impacting my migraines now. So today I went to see my primary doctor who works with me on my migraine meds and we increased my daily migraine preventative medication. So hopefully that will help. *fingers crossed*
But let me really tell you what life has been like post-birth control. I can sum it up in one word…pineapple. It’s been pure hormonal chaos. I have been a crazy hormonal mess since then. Don’t get me wrong…I am always an emotional person. But this is a whole new level of emotional for me. I have strong cravings for foods I can’t and shouldn’t eat. I am breaking out…I have had more pimples on my face than I ever had before. I have mood swings in an instant. Birth control helped regulate all of that. OMG I miss it so much.
Aaron has had to put up with my crazy hormonal imbalances and this could go on for awhile…after being on birth control for 16 years, it can take anywhere from 3 months to 1 year for hormones to balance back out again. He has really been a champ…for the most part. He has been weathering this storm. And we even created a safe word for the occasions when I am just beyond hormonal and just can’t even. And that safe word is…you guessed it…pineapple. So when I say pineapple that means he knows to back off or something terrible might happen to either one or both of us.
Hormones are a bitch to control. It’s been so long since I have had to deal with them. I miss my birth control… so much. But I look forward to the healthful possibilities.
***The purpose of this post is to give light and exposure to what physical therapy is like for those of us with IC and PFD. This is not in any way meant to discourage anyone from going to PT. PT is extremely beneficial in healing those of us with IC/PFD. I would not stop going to PT for anything because it truly helps me. And the comparison that physical therapy is like physical torture is tongue in cheek. ***
Every Monday I go to physical therapy (PT) for my Pelvic Floor Dysfunction (PFD) and Interstitial Cystitis (IC). My pelvic floor truly is dysfunctional so it needs it. My PT is not just focusing on the pelvic floor, it focuses on many parts of my body…thighs, abs and back. All of these body parts hurt because of my IC and PFD.
What makes my pelvic floor so dysfunctional… my muscles tighten up so much that I can’t pee. I am physically unable to pee. I sit down to pee because I need to pee (often due to my IC). And I just sit there. At it’s worst, I’ve sat on the toilet as long as 15 minutes trying to relax enough to just be able to pee. It’s excruciatingly painful in a way that is hard to explain. The more stressed out I get the worse the issue becomes. This applies to my entire body. My whole body seems to want to protect my bladder… so it tightens up to do so and then forgets to release. So I am just walking around all the time in pain because all my muscles in my body are so tight. But PT does help with that.
And at this time my PT is indefinite…as in there is no timeframe in which I will be going. Usually, people go to PT and they are told this will take 4-6 week or something like that. But in my case, and others like me, who knows how long it will last. I have been going since mid-December 2016 and there is no end date in sight at this time.
My physical therapist, Jen, is great. She is very understanding and patient. She exudes empathy and always makes sure that I am okay. That being said, I’m pretty sure PT is actually physical torture in disguise.
People wonder and often ask me about how one does PT on the Pelvic Floor Muscles (PFM). Their first question is usually something like you do kegels right? The answer is definitely not. Kegels are the opposite of what we want to do. Although there might be a time and place for them in PT, now is not that time.
Pelvic floor muscles are inside of us, so needless to say, a lot of the work in PT is done internally. Not every physical therapist is trained to do this. This is a specialty that can be difficult to find and often insurance doesn’t cover it. Not every Joe Schmo physical therapist is qualified to do this job and if they say they are…run far far away. We need proof of that…because these are our personal bits. My lady bits are not to be trifled with by someone who wasn’t properly trained to trifle with them.
And yes… it hurts. A lot. There was one moment that I can recall so vividly when my physical therapist was putting pressure on a trigger point inside of my on a pelvic floor muscle and it hurt so badly I almost threw up. It’s not like that every time, but it’s always painful…just like PT tends to be.
Generally, after PT, I leave in excruciating pain…I can barely walk for a few days up to a week after. I tend to flare up for a least a couple of days afterward too. But I always remind myself that it will help my pain in the long run. And I have seen improvements since I have been going…it usually one step forward and two steps back. And I also remind myself that I have to get worse before I get better. The pain that is caused during PT is temporary and over time will benefit my body immensely.
I also have at home PT exercises to do. I have a walking program which is “simple” enough …where I have to purposefully walk to improve my walking daily because I struggle to walk any distance these days.
And recently she added the bridge and clam shell exercises. The bridge is when you lay on your back with knees bent and lift your body up while your hands are pressed on the ground. The clam shell, or clam jam as I prefer to call it, is where you lay on your side with your legs bent with one leg on top of the other and lift the top leg up which gives the look of a clam opening. The clam jam is one that I struggle with the most right now because I am very tight in the hip and thigh area.
There used to be a time when I did yoga daily and I was so ridiculously flexible…it wasn’t even that long ago. It’s like out of now where I am no long able to do yoga like I used to. I can barely do a clam jam, let alone walk a given distance.
My last home exercise uses a tool called a Therawand, pictured below.
As you can see it looks like a dildo or G-spot stimulator, but I promise you that there is no stimulating going on when the Therawand is in use…TMI? Too bad. This whole blog is TMI in a way. I want people to understand what people with PFD/IC and other similar chronic illnesses go through and the only way to do that is to share my story.
The Therawand is used to press on trigger points to relieve tensed muscles which is the same thing my physical therapist does when I go see her. The difference is I have control over this and since I am at home I tend to be in a more relaxed setting…so in theory, it should hurt less. Although it usually doesn’t hurt less.
The Therawand does not get used alone, that would hurt way too much… more than it already does. Lubrication is required. And because I am very sensitive I am very careful about the lube I use. For this, I chose Aloe Cadabrawhich is a natural and organic aloe lubrication. I just use the regular “unflavored” kind but they do have different flavors or scents.
PT is a special kind of hell that has the ability to hurt so good and just plain freaking hurt until the point of wanting to vomit. But if you’ve ever had PT then you know that it takes awhile to see the progress and pelvic floor therapy is no different.
After my hellish week last week, I went to PT this past Monday and told Jen about said hellish week. And she was like wow okay that is rough. So we did minimal internal work because of that darn speculum from when I was at the gynecologist, which really did a number on me that flared me up something fierce. She decided to work on my head some after that because I told her about my allergic reaction monster migraine from hell.
She squished my head on both sides and it was oddly relieving. And then she squished my head on my forehead and the back of my head…and again…oddly relieving. She did all kinds of PT things that involved pressing on my jaw, head, and neck. And while it hurt it also felt good like it was relieving something. My entire head had been tensed up and had all kinds of trigger points from that monster migraine. And she did PT things that left me feeling very weird and but also reduce the tension in my head as well…which was good.
So what am I getting at? Well… that’s hard to say but I think my point is that PT sucks. And I genuinely just want people to know and understand what goes on during PT for IC/PFD…because it’s not all kegels and dildos. It’s personal, private and even embarrassing for many people to talk about.
It is not fun. And I’ve seen people talking in the IC support groups, saying stuff like their partners don’t understand why they go to PT or what they do in PT. Or even that their partner accused them of going to PT to “just get off”…which is not only mean and just a jack ass thing to say…but it’s also categorically false. There is nothing fun about pelvic floor therapy. It’s painful and can be traumatic.
PT isn’t for everyone but for those of us who need it…it helps tremendously. Having a chronic illness is never easy. And putting ourselves knowingly and willingly in more pain each week never feels good…but we do what we must and we just tough it out with the hope that one day we will find the relief that we have long been seeking.
I’vementioned recently that I have been sick with bronchitis, which is difficult by itself. As someone who has asthma and chronic bronchitis, I can say that it sucks. It always makes me wish lungs were not required to live. I say this from experience… I’ve gotten bronchitis 1-2 times a year for as long as I can remember.
And having bronchitis on top of IC and migraine and etc is a whole other challenge.
But what happens when you get a new medication and you have a terrible reaction to it on top of being sick and having a chronic illness? Because that is exactly what happened to me this week. My doctor prescribed me a new inhaler called the Combivent Respimat inhaler…seemed innocent enough. It is a short-acting inhaler that helps to relax the lungs.
On Tuesday, February 21 at approximately 4:30 pm I used the inhaler and then went to see a friend for a bit. We went to a chill place that is semi-noisy which has been known to give me migraines but I went prepared with earplugs and my sumatriptan, a prescription migraine abortive. We didn’t stay very long. I took a triptan around 5:30 because I felt a migraine coming on…but I had no idea of what was to come.
I do have chronic migraines and I’ve had them for many years. But what came next was like nothing I have ever experienced in my entire life. I finished up with my friend and went to Aaron’s to eat but by the time I got there my migraine was hitting hard so I got my migraine hat (ice pack to wrap around the head) and laid down. It felt like there was 20 tons of pressure on my entire skull, which I’ve never had before. Not only that but my eyeballs hurt like they were ready to pop out of my head. And even my hair hurt! Yes…my hair… Like each individual strand.
This migraine made my regular migraines look like fun little headaches…which they are not. -Rachel Bob
I’ve read stories in the migraine community about people’s hair hurting but I personally never experienced it…until now. It was excruciating…pure agony. I have a lot of hair, waist length, and it’s super thick Jew hair. There were a few points where I was just ready to chop it all off because I couldn’t take it.
Aaron said “How is that possible? Hair has no nerves.” I said “How is anything possible? I don’t know. All I know is what I feel and my freaking hair hurts.”
Aaron tried to get me to eat. And usually eating helps reduce my migraines but I could not eat because it physically hurt me to chew. At that point, I thought I might have to go to the hospital if this didn’t let up. So I decided if it didn’t improve by morning I would have Aaron take me to the hospital.
One ‘good thing’, was that during this agony my body didn’t seem to register any other pain I was in… like IC or PFD. I was awake most of the night because I couldn’t sleep due to the tremendous amount of pain I was in and I was going to the bathroom frequently, but this time it wasn’t because of my IC. I think it was because my body was trying to get that medicine out of me. I went to the bathroom at least 10 times which is more than I usually go at night time. And every time I went…it didn’t hurt when I peed. Which was a miracle, but also, I’ll gladly take my IC and PFD pain over the agonizing medication migraine any day.
Eventually, around 4 am I fell asleep. I woke up around 8 am with a lessened migraine…thank goodness. But I was beyond exhausted. I ended up canceling my day, which was therapy at noon and my class in the evening. Also sometime on Tuesday night when in the throws of that torturous migraine I realized I had a 2-3 page paper due on Wednesday and I was like well I’m not going to be able to do that now.
I guess fortunately for me, I now have OSWD (Office for Students with Disabilities) Accommodations so that I can turn in assignments late and miss class if I’m in a lot of pain. So I emailed my professor to let him know that I will be turning in my paper late and missing class. It’s kind of “funny” because when I got those accommodations approved I said…yea but I won’t ever use them. And then the very next week here I am using the heck out of them. But with good cause. It’s not like I am making this up.
Because you can’t make this shit up. And it goes on. So then I wake up at 7 am expecting to feel better for my class at 9:30 am and guess what? I’m not better. My eyes hurt so badly I think they are going to just fall out…I can barely keep them open and they are puffy (not swollen shut but puffy). I still had a migraine as well, although nowhere near a bad as it was. But my eyes hurting came with extreme light sensitivity. Along with stomach pains and some vomiting. Okay..well guess I’m not going to this class either. I thought I really might have to go to the hospital.
So I called my doctors office and left a message. I actually did send my doctor a message on Wednesday as well to let them know what was happening. They called me back a bit later that morning and said I should come in at 2:30. So instead of going to the hospital, I opted to go see my doctor.
My doctor was shocked that I had a reaction this strong to this particular inhaler because it’s very similar to two of the other inhalers I already use. But I’m not surprised because that’s just me. If there is going to be someone who has a reaction to something that most people are fine with…it’s going to be me. I am so sensitive to everything. It’s a wonder that I am still alive.
And then today I had my annual appointment at the gynocologist…yay…who doesn’t love that? meh. But I do love my gynecologist, I’ve been with her for almost a decade now. Unfortunately, today was my least favorite visit…were any of them my favorite? lol probably not. This is my first time back in for my annual with the diagnoses of interstitial cystitis (IC) and pelvic floor dysfunction (PFD).
I had been nervous about the speculum and discussed it with my physical therapist. She told me I can tell my gynecologist that and request no speculum because of the PFD. So I talked to my gyno about it. But unfortunately, I have a history of pap smears that come up as pre-cancerous so she needs to really get in there with the use of the speculum. How can I argue with that? So she used the smallest one they had and it was very small, about the size of her pinky which is drastically smaller than I’m used to.
Unfortunately, it still hurt so freaking badly. And even more so afterward…I am now in the midst of a terrible flare. My bladder is spasming and freaking out. And my poor pelvic floor is just in agony. I know it was for a good reason…but FML. Haven’t I had enough pain for one week???
For those of us with chronic illnesses, this kind of stuff isn’t uncommon. Maybe my week was a bit more unfortunate than most. But this is our lives. It doesn’t kill us.. allegedly it makes us stronger…or so I’ve heard.
Having a week like mine or even just a day with something more minor than what I experienced, can really set back those with chronic illness in ways that are hard to predict. It can cause flare ups that last extended periods of time or weaken their already weak immune system so they get sick.
I didn’t even mention the stress of it all. Not just the stress of having the allergic reaction to the inhaler but having to miss my classes, which I hate doing. Stressing over whether or not I should go to the hospital. The stress of not being able to open my eyes or eat. And then going to the gynecologist is stressful by itself. The speculum. The flare. And so on.
For people with chronic illness, stress is usually one of the biggest triggers. So how do we come back down from that? We have to remember to take care of ourselves. I committed to self-care and continue to do so. And we can all just keep in mind that…