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!
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 am elbow deep into my second semester of graduate school. Wow. It’s exhausting. My three classes are going well so far. I am taking Quantitative Research, Human Behavior in the Social Environment II (HBSE) and Forensic Social Work (FSW) at George Mason University. The FSW class at George Mason University (GMU) is particularly interesting. I don’t love my class schedule. Well… my Quantitative Research class is online which is great because I don’t even have to leave my pajamas for that.
Being chronically ill and going to grad school is a challenge. When I go to class, I have to make sure I bring everything with me that I need. First, there are the obvious school items like pens/pencils, notebook/paper, MacBook, day planner. And then for me, there are items like my alkaline water bottle, a cushion for me to sit on, sunglasses, migraine glasses, my regular glasses in case I need to take my contacts off, my medicine bag (which is just what it sounds like…it’s a make up bag filled with all the meds I take daily) and my Keto IC food in my polka-dotted lunch box. It always feels like I am taking a long trip when in reality I am just going to one class.
I was recently invited to join MuPi, the Master of Social Work chapter of the Phi Alpha Honor Society. The minimum GPA requirement is a 3.8, so luckily I got that 3.9. Well, we shall see how I fare this semester but I suspect it will turn out with similar results. I’m still a smidge bitter about that 3.9 but this too shall pass lol. I can’t really be too upset about it because last semester my health was really bad off and I was in so much pain….really I’m lucky I made it through at all.
Mu Pi, or Moo Pie as I like to call it, holds weekly meetings and I haven’t been able to attend any of them because they are at the same time as my physical therapy appointment. I changed my PT appointments for the month of March though so that I will be able to attend the Mu Pi meetings because I do actually want to be involved.
I recently had my request for accommodations through the Office for Students with Disabilities approved, which is bittersweet. My accommodations are: extensions on assignments, taking frequent breaks during class (for bathroom or pain), being able to leave class early or not come to class (with professor’s permission, of course). I hope I will never have to use any of these accommodations…but in a way, it’s nice to know that they are there as a backup in case I need them.
I am really struggling with all of this though. I know I am taking care of myself first and foremost. Self-care is my priority. But I have had to give up my life as I knew it in order to do this. And now I feel disconnected from all my classmates. It’s very hard. I only have one face to face class at Gallaudet with my actual cohort and it’s not enough time to spend with them, like last semester where I had three classes on campus with my cohort. And I haven’t been able to go to the Mu Pi meetings because of PT. My other class at GMU is with a whole other group of people who I don’t even know so obviously I’m not connected to them at all. I am literally an outsider in this cohort who has been together for almost two years. I feel disconnected.
Not to mention I miss the DeafBlind community so badly. The other day I saw a group of them chatting at Gallaudet. I wanted to go say hi but I had just finished my PT exercises and therapy. So I was physically and emotionally exhausted and in the pain…my body couldn’t handle it. And really I couldn’t handle it emotionally either. I would have become incredibly emotional and started crying because I miss them all so much.
I just feel this indescribable disconnect this semester.
I have given up so much. And I am really starting to feel my losses. I try hard to keep busy and since I have been so sick recently I have been distracted with that. But it doesn’t matter because at the end of the day I still feel lost and disconnected from people.
I am trying so hard to keep going and not let it get me down. I keep reminding myself I am doing what is best for my health. I can’t push myself too much or I will lose any progress I have made- healthwise. And I have made some…I have less inflammation in my body which is great. And I have short periods of time where I have less pain.
When people with chronic illness(es) commit themselves to self-care and improving their health, it is absolutely the right decision… but it is not easy. To some people, it might seem self-involved or selfish because all we do is think about ourselves and how things will impact our health. But it’s not selfish. We just want to be better…be healthy. I want to be the person I was so that I can do the things I used to do. I know if I just stop caring for myself now and try to go back and start working again I will hurt myself very badly.
Having chronic illness(es) is never easy. And when you start to feel disconnected from everyone around you… it’s all too easy to become depressed and isolated. I am fortunate to have my support system to back me up and be here for me when I need them most. But even having a support system doesn’t prevent the feelings of disconnect. This is something I will just have to process and go through. There is no fix it for this feeling. I can try to be more involved in some ways but I need to find the right balance. I am concerned about undoing all the progress I have made.
I am learning to accept my life for what it is right now. It is a struggle but I’ll get there eventually and I am sure by the time I get there it will change and I will have to start learning to accept it all over again. But that’s life…beautiful messy heartbreaking inspiring life.
Okay, so it’s back to school time for me. I am going into my second semester of graduate school in the Social Work program at Gallaudet University in DC. This should prove to be an interesting semester. I will be taking three classes: Quantitative Research (online), Human Behavior in the Social Environment II and Forensic Social Work ( Forensic SW will be at George Mason University through the consortium of DC schools)
One lame thing is that my first class is on January 18th which is also my 31st birthday. thumbs down…lameeee.
As the weeks of my winter break have steadily crept by, I have rested as much as I was able to. Although during the holidays rest was not really an option. So I have tried my best to get rest since the new year. Going to physical therapy wasn’t exactly restful either. But as I sit here printing out my 30-40 page syllabi, I have realized that I am really not ready to go back to school. Graduate classes are challenging and I just have this flash in my mind of what my first semester was like…how completely overwhelming it was. And I am a good student. I love school. I have always loved school.
When I was a kid, if I got sick I would fake being well so I could go to school instead of having to stay home sick. I was that kid. Not like most people knew kids like that. But that was me. So that should give you an idea of what kind of nerd you’re dealing with here. #tooschoolforcool#nerdyandproud
My first semester of grad school, while my health was degrading fast..my pain levels were off the charts… migraine for over a month, pelvic floor muscles tightened up so I couldn’t pee and so much more pain. I had to stop working and volunteering but I still managed to get a 3.9 GPA. I am still a smidge bitter that it’s not a 4.0, but I know it’s because of my health.
All of that aside… I am really just worried how the semester will play out with my health. It should be considerably easier now that I don’t have a job. I am in the process of applying for SSDI (disability) so that I might have some form of income. Which does not thrill me but I should probably have money coming in sometimes. I also worry about my new Keto IC diet, how easy/hard will it be to keep up with after I begin going to classes. Granted, I have one online class, one at Gallaudet’s campus and one at George Mason’s campus so I won’t be on campus too much. And so I just bought a cute new lunch box to help motivate me to make my lunch and snacks. With such a restricted diet, it is very important for me to have food with me at all times in case I get hungry and need to eat. Nothing like teal polka dots to motivate me to make my lunch daily.
People with chronic illness often need to think about food. They often have restricted diets, elimination diets, food allergies and more. There’s always something we can’t eat. With my IC diet, I have a list a mile long of stuff I shouldn’t eat. This list which is published by the Interstitial Cystitis Association (ICA) breaks it down into three categories: Bladder friendly, Try itand Caution. It’s a comprehensive list that every IC warrior should take into consideration when changing their diet. And now with Keto added on, I am even more restricted, but that’s okay. It’s a challenge that will be worth it for my health. hopefully.
There is even a migraine diet. A lot of the triggers for migraines are the same triggers for IC. I suspect these triggers are common for many chronic illnesses. Because they are foods that aren’t necessarily nourishing to our bodies.
For a chronically ill person to truly heal…we need to nourish our mind and body.
Truly going back to school is exciting. I have always loved it. I love buying school supplies. Highlighters, pens, journals and so on. But this time around just feels different. I am worried about my health. I am mourning the loss of my jobs and volunteer work. I am mourning my food losses too. And the fact that the first day of my semester starts on my 31st birthday… doesn’t help. *grumble grumble*
Being chronically ill during celebratory times is difficult. Heck… being chronically ill during non-celebratory times is hard. But when there’s holidays, anniversaries, birthdays… it makes us feel even worse. Because often times we are not up to participating because we are in pain or don’t feel good. Maybe we have difficulty walking, like myself. My ability to walk more than 5 minutes has been compromised and I need to build up my stamina and tolerance. Nothing makes you feel worse than knowing you should be celebrating something, like my birthday or our recent one year anniversary, but not having the ability to really do anything to celebrate. That’s a hugely terrible feeling. It’s easy for us to fall into a chronically ill state of mind where we think that it’s just easier for us to do nothing and celebrate nothing because what’s the point? The people around us might not know what to do for us and maybe unsure if they should do anything for us at all.
Don’t do nothing. I will repeat: Don’t do nothing!
Doing nothing is a slap in the face to your chronically ill loved one. Maybe your chronically ill loved one said they want a low key celebration. Okay, that’s fine. What’s their favorite food and dessert? Just have a small intimate dinner with the two of you or the family. Buy them a card. Get them a gift certificate or a gift you know they will love. Google gifts for chronically ill people. You would be surprised at the amazing gift ideas that come up. There’s something for everyone. Everyone… and I meaneveryone… no matter what kind of pain they are in or what kind of illness they have, deserves to have some celebratory moments now and then. We need them to survive the pain of the every day.
I want to have an amazing birthday because… I am alive and I’m only 31 years old.
But I will make the most of it. I celebrated my birthday with Becca yesterday. And there will be further celebrations this week. I will keep my spirits high and hope that this semester will be better than the last. I have high healing hopes.
I was diagnosed with IC in March 2015, so almost 2 years ago. And I always thought it would just be easier to not tell people. The less people that knew the better. If people knew, it would just make things more complicated. It would create more questions. People might question me. They might question if I am actually in pain or if I actually have this disease/condition/illness/whatever. There’s the dreaded, “But you don’t look sick”. That every chronically ill person loathes.
And what if they looked at me differently after I told them? What if it makes me appear weak? Or like I can’t handle the stress of whatever comes my way?
I didn’t want to have to explain it. Maybe I was embarrassed too. Who wants to talk about their bladder and lady parts or [insert body part here] with their family? Or friends? or strangers? or whoever? It’s personal. It’s uncomfortable.
But guess what? That’s my life. My life revolves around my bladder now. I have slowly started coming out and telling more people. It started last year… one year ago during Chanukah when I was kind of forced into telling my Aunt Ro. And I am so glad I did. It is one of the best things that has happened to me since I was diagnosed. And one day I hope she reads this and knows that I feel so fortunate having her support me through this. She works at a urologist’s office, so she knows what goes on with people who have IC. When she found out I have IC she started checking in on me. Which might seem like nothing to some people, but to someone with a chronic illness… it means a lot.
People who have chronic illness often feel isolated and alone. I am no different. I have a wonderful support system. My amazing boyfriend, Aaron, who is there for me every day. My friends Becca, Shelby, Christine, and Nai. And, of course, my mom. And a few other people. I am so lucky to be supported and loved. But I still feel alone in my pain. Because as much as these people love and support me, they can’t feel my pain and they can’t understand what I am going through. I joined a support group online early on. And I have become very active in the group recently. There is comfort in knowing that I am not alone.
But back to my point. Over the last year, I have started telling more people. I told 2 out of 3 of my teachers this past semester. And I will tell all my teachers this upcoming semester. I’ve told a couple of my cousins about it. And last night at my family Chanukah party I told my Great Aunt and my Uncle. It feels like a huge weight is being lifted off of me every time I tell someone. Yea…it’s uncomfortable. But that’s my life. That is life. Why should I struggle through this alone when I have people who care about me who are willing to help me carry the load?
And like many chronically ill people, I do worry that they will get tired of me and start thinking of me as a burden. That is a frequent worry of mine. But I have to trust that these people love and support me and will always do so.
Coming out to friends and family as chronically ill is never easy. I waited until I was ready to tell people and that’s okay. If I never told anyone…that would be okay too. But feeling less burdened because other people know what I am going through and can help me through it… that’s a good feeling too.