Having a support system

 

[Image description: from left to right: Becca, Rachel, Aaron and Shelby standing next to each other and smiling]
A strong support system is crucial for people with chronic illness to survive and thrive. A support system can include family, friends, support group, doctors, other medical or holistic professionals. My support system is coming together nicely. 

 

The players:

Rachel – The One with IC and more

Debbie – The Mother

Aaron – The Boyfriend

Becca – The Thoughtful One

Shelby – The Cautious Optimist

Christine – The No Funny Business-er

Blinken – The Fluffy Cat

Stanley – The Ninja Cat

Marzipan – The Biggest Little Baby Cat

Ziggy – The Not-So-Nice Cat

Now that we have met the players and their roles. It’s important to understand how all of them will work on a macro and micro level. I know my relationship with each of these people as individuals so on a micro level it’s easy. But on a macro level, the system as a whole should work together fluidly. 

It’s important to find people who you trust, will be there to support you, have your best interest in mind and can be part of a team effort. This can be a difficult task to find a group of people. And for me, as an introvert, I don’t love the idea of having a group of people discussing my well being. But I need a solid plan and a strong support system. Each person

Each person in the support system plays their own role. One or two of them might be better at emotional support. While one might be better at providing support through actions, like someone who comes to see you once a week and cooks you dinner. They are showing you they care about you by being there for you regularly, even if they might not be the best with emotional support. And that’s okay if you have a strong enough support system then it’s good to have a variety of people who can provide different kinds of support. 

I will be planning a huge lifestyle diet change coming up within the next week or so. On Saturday, January 7th, my support system will have a round table discussion of what my diet will look like so that we are all on the same page. So I can go hang out with Becca and she already knows that I can’t eat tomatoes because of my IC and there’s a good chance I’ll cut out sugar and processed foods and so on. Everyone who is in my life already knowing will make it easier for me to follow through and be held accountable for my actions. 

 

Image result for creating a support system quotes
[Image description: Real friends support you no matter what. If you want to be a tuna fish then it’s my job to encourage you to be the best damn tuna fish that you can be.]

 

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New year… New you??

 

[Image description: People treat New Year’s like some sort of life-changing event. If your life sucked last year, it’s probably going to still suck tomorrow.]
It’s a new year already. 2017. Wow. How does that even happen? The whole year flew by. 

 

Almost two years ago this March I was diagnosed with IC. 

One year ago this past December I met my boyfriend, Aaron. And on January 14th will be our one year anniversary, which is crazy because it definitely feels like 6 years. 

I am almost 31 years old; on January 18th. This is not where I expected to be at this point in my life. I’m not exactly sure where I expected to be. But I promise you it did not involve me starting a blog chronicling my journey with chronic illness. But here I am. I have given up so much in the last few months to be right here in this exact moment.  These chronic illnesses have kicked me until I was down and then pounced on me some more. I’d just like to take a moment and image what that would look like. I’m picturing a little brain (representing migraines) and a little bladder just jumping up and down on top of me. 

Anyways…back to the point, I never thought this would be me. Being forced to give up the goal and passion of mine that I have been working towards for years because of my health. It is heart-wrenching. Whenever I think about it I can’t help but cry. I will get into this more later…it’s still a very raw topic for me.

The only positive is that I am still in graduate school for Social Work and I have decided I want to add public health as a specialty so that I can work with and advocate for people who have chronic illnesses. 

 

new year? more like same shit, different year
[Image description: A Cartoon image of Batman looking like he is thinking and words overlaid that says New year…? More like..Same shit, different year]

On coming out

 

[Image description: Close up of an ornate key in an lock with the door cracked open]

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.

 

Coming out as anything is never easy, and in the case of people with invisible chronic illness,.png
[Image description: coming out as anything is never easy. and in the case of people with invisible chronic illness, there comes a time when if you don’t tell people it starts to negatively impact your health]

On the road…to getting lost

 

I just finished my first semester of grad school. Go me! In the Social Work program at Gallaudet University. But in the course of one semester…so much has changed.

The workload of three graduate-level MSW courses was a lot more than I anticipated. I had to stop working and doing volunteer work. I only worked part-time on a freelance schedule and same with volunteer work. But my health tanked and fast during this past semester. My pain levels for my IC and migraines were off the charts.

And just as all this was happening my insurance company decided I don’t need my IC medication, Elmiron, anymore. Elmiron is on the only FDA approved med on the market specifically for IC and because of that it is very expensive at $3 per pill and I take 3 pills per day. Elmiron coats the bladder to give it a protective lining and it takes months (3-6 months) to work; I was on it for about a year. My insurance claims that I said it doesn’t help me, which isn’t true, they are just making stuff up because they don’t want to pay for it anymore. It is now in the appeal process. So my urologist will have to convince the insurance doctor that I need this medication. Which is insanity since I don’t know this person at all.

And let me just say when I came off the Elmiron, I felt it. It hurt more than anything ever. First I was so tense I couldn’t pee and I would sit on the toilet for minutes at a time just trying to relax my pelvic floor muscles enough (that’s what physical therapy is for, will discuss later) to actually pee. And finally, when I did pee, it burst out like molten hot lava and I just felt like I had to be urinating out the protective lining of my bladder…for days.

But there is a natural alternative called Marshmallow Root; similar to Elmiron in that it coats the bladder with a gelatinous coating to protect it. Many people who can’t afford Elmiron or decide to go on a more natural path, use Marshmallow Root instead. I have been taking the MR capsules 2 capsules 2x/daily. and drinking MR tea. The pain from coming off the Elmiron has subsided, so I’m just back to my usual pain.

I don’t know if and when my insurance will decide to approve me taking Elmiron again but I’m not sure I want to. I think I might want to stay with MR for awhile and take a more holistic approach. Which leads me to my next plan of action…drastic lifestyle diet change

My health is in peril. Clearly, whatever is happening, my body is screaming at all full force for help. And I have to listen because I can’t live this way.

 

image description-if you listen to your body whisper, you wont have to hear it scream.png
[Image description-if you listen to your body whisper, you won’t have to hear it scream]

All the pain

[Image description: A 0-10 pain scale 0 with a green smiley face. 0-3 is green 1-3 is mild. 4 is yellow moderate. 4-5 yellow/orange. 6 is orange severe. 8 is sad face very severe. 7-9 is dark orange to red. 10 is the worst pain possible with a crying red face]

Here’s the real reason why I am here. Pain. I have been in pain since I was diagnosed with IC. But since September/October 2016 I have been having off the chart pain levels for both my IC and migraines.

For about a month, I had a migraine. I woke up with a migraine every day, which never had happened before. I’ve had migraines since I was 18 but never have I had a morning migraine. And now I was having them daily. I didn’t realize how long it had been going on, I was only minimizing the pain by taking Excedrin Migraine. My migraines we between a 7-9 on the pain scale for that long. I wasn’t on migraine meds because for a long time they were under control. But no longer. My sensitivity to lights, smells, and noises increased drastically. Smells that never bothered me before were coming at me like a blast of air in your face. And my visual auras, which are like headlights flashing in my eyes, were frequent as well.

I went to my doctor of 10+ years. She has seen me on every migraine med ever. We immediately got me on a preventative, Topamax (aka dopamax). And an abortive, Sumatriptan. As soon as I started taking the Topamax there was a huge decrease in my migraines. But my visual auras have increased and sometimes leave me feeling off balance. They are still continuing now. But we might be changing my migraine meds, at my next follow-up on January 4th, because of that. We shall see what happens.

I also bought migraine glasses, which are not RX, nor are they cheap. But they are made with a special tint, called FL-41, which helps to cut out certain types of light. I really like them when I am in the classroom because of the terrible fluorescent lighting. I would say that they have helped me a lot. They are worth the price of $149, if you have migraines with light sensitivity, you will understand it. I bought mine from https://www.axonoptics.com/  but there are different stores that sell them.

As for my IC, it turned into debilitating pain. The pelvic floor muscles, which everyone has, they sit at the bottom of your pelvis and cradle your bladder and uterus and whatnot. Mine decided to tense up as tight as possible. To the point where I can’t pee when I want or need to go. And because I have IC, I tend to have to go often…especially when I’m stressed. So not being able to pee really does not help the situation. I can sit on the toilet anywhere between 1-10 minutes before my muscles relax enough to allow me to pee.  Yea…it does hurt. This often ranges from a 7-10 on the pain scale.

My urologist referred me to a physical therapist for this. I have gone to physical therapy for this before, and at the time I thought that hurt really badly. Oh, how wrong I was. No this time around for physical therapy…is pure hell. Physical therapy for pelvic floor muscles involves manual internal manipulation of the muscles. This is why it can’t be just any old Joe PT Schmo off the street, it has to be a Physical Therapist who has had specialized training. But as one might imagine, internal physical therapy hurts something fierce. I had PT on my ankle and that hurt quite a bit and I didn’t like it at all. But PT for internal PFM is like no pain that can be described. So I’ll leave it at that. Afterward, I could barely walk for a week. Please understand she did minimal internal work, she didn’t push me too hard and stopped when I couldn’t take it. It was just my body’s reaction to be like OMG WTF ARE YOU DOING TO ME?!?!? I couldn’t walk or move. This was a 10-11 on the pain scale. It was bad. I expect it to happen again. Unfortunately. But I do see a difference, I have more release in my PFM. So the PT is working how it is supposed to.

Another symptom that was appearing during those months was all the muscles from my thighs to my abs were sore. This tends to be a consistent 5-7 on the pain scale. They felt like I had worked out a lot, which I don’t…because… IC. When I went to my now physical therapist, Dr. Jen. She told me that my whole body was tensing up because it was trying to protect my bladder and it was unable to release itself so it stayed tensed up all the time.  So needless to say Dr. Jen and I have a lot to work on. My main thing is: relax! lol Like it’s that easy.

On the journey…

 

I don’t know why I am doing this. Creating a blog. But I need to make some changes in my life and maybe I can hold myself accountable. But if you have found yourself here… how the heck did you get here? Well, you might be here because you are someone that knows me and cares about me and wants to check in on how I am doing regularly. Or you might be someone who knows IC (personally or through a loved one) and you’re not a fan of it or are trying to understand it. Or maybe you know someone with migraines or another chronic illness.

My name is Rachel Bob and I have had migraines since I was 18 and I have Interstitial Cystitis. I was diagnosed with IC in early 2015. And nothing has been the same since, but actually even before that life wasn’t the same. But I am getting ahead of myself.

What is Interstitial Cystitis?

Interstitial Cystitis or IC (also referred to as Painful Bladder Syndrome…a very poetic name) is a chronic condition/disease of the bladder.

www.ichelp.org describes IC as a condition that consists of recurring pelvic pain, pressure or discomfort in the bladder and pelvic region, often associated with urinary frequency and urgency.

It’s all of that and so much more. It’s a comprehensive disease that impacts the body by radiating outward from the bladder. Every person who has IC experiences it in their own way and there is no one specific way to get IC. From my research, IC seems to strike for a variety of reasons and none of them seem interrelated. Although some people with IC, had many bladder infections or urinary tract issues prior so their IC might make more sense, if that’s even possible. But my IC hit seemingly out of nowhere.

My IC Story

To tell my story I have to go back to when I believe it all began.

It was Fall 2014, I was 28 years old and I had just begun my first semester at Gallaudet University in Washington DC. It was a very exciting time. But I got sick with bronchitis which was nothing new since I have had chronic bronchitis my whole life. Even on my three inhalers, antibiotics, cough syrup with codeine and steroids, I persevered and went to school (I wasn’t contagious). And then when I was finally feeling better in early October 2014, my dad died. I won’t go into great detail here, but he had been sick for many years.  It was a huge shock. And I got sick with bronchitis again. His death was incredibly stressful for my family and it took its toll on us. One month after he died, my dog died unexpectedly. She was 15 but still unexpected. In the course of one month, I lost two of the most important people in my life. And it got worse. The ‘relationship’ I was in which wasn’t that great to begin with quickly deteriorated because he couldn’t understand why I was sad and grieving all the time. He wanted me to just bounce back and be myself. So I stopped talking to him completely. And then my best friend at the time couldn’t handle my stuff so she disappeared from my life. I didn’t have time to dwell on the fact that my relationship and friendship were over because I was too busy trying to mourn my losses, all the while still in school. I came out of that semester with a 4.0 GPA.  No matter what happens ….I am determined to succeed. But it doesn’t end there.

The new year of 2015 came and went, I was in a foggy haze. Still trying to figure out what all just happened. I hadn’t been taking care of myself. In February, I thought I had a Urinary Tract Infection (UTI) so I chugged some cranberry juice and kept going on with life. But it didn’t get better so finally in March I took the time to go to the doctor for a UTI test. They tested, gave me antibiotics and it was negative. I went back a week later, still in pain. Test again. Antibiotics again. Negative again. They did some exams and tests on me but couldn’t figure out why I was still in pain. They sent me to a urologist. Luckily, I went to a doctor who was familiar with IC. Many people with IC are misdiagnosed for years before they find a doctor who can correctly diagnosis them. So in that sense…I was one of the “lucky” ones because I was diagnosed early.

Here’s a picture of me pre-IC. When I first got accepted to Gallaudet… I was so excited and happy. So naive to think that that feeling could last.

[image description: Me with long red hair, standing with a big smile, behind my car which as a new window sticker on it that says Gallaudet University from when I was first accepted into Gallaudet]