Why I am struggling to recognize myself

 

[Image description: a warped picture of Rachel Bob’s face]

I am at a place in my life where I am really struggling to recognize myself. I am giving up things that I love left and right because of my chronic illnesses. And it feels like I am losing myself, my identity. The fact is that chronic illness is more than just physical ailments, although there is plenty of that.

There’s a book, which can be found on Amazon, called Good Days, Bad Days: The Self and Chronic Illness in Time by Dr. Kathy Charamaz. She explains that there’s a very narrow view of suffering that tends to be defined as physical symptoms which only ignores or minimizes the broader significance of suffering. She says:

The loss of self in chronically ill persons who observe their former self-images crumbling away without the simultaneous development of equally new ones.

Dr. Charmaz also explains that all of the experiences and meanings upon which the chronically ill person had built former positive self-images are no longer available.

So in my situation, I have spent years building a foundation, reputation, and life working with, advocating for and being a part of the DeafBlind community. But now that my health has progressed to the point where I can no longer do that I feel lost. The identity I built and cultivated within the DeafBlind community was/is a huge part of who I am because it is difficult to talk about myself without talking about my passion for working with the DeafBlind community. Being that most of what I did was directly related; my jobs, my volunteer work, my BA focus and my MSW focus. That carefully cultivated life I watched grow and bloom around me… has come crashing down and now I have no idea what’s left.

It’s not to say that I can’t be me without the DeafBlind community. I can and I will get through this. And yes I have other interests that I can and will pursue. But my goal and passion have been this for so long that to no longer have that be my goal feels wrong. It’s a betrayal to myself and to the community of people who I love.

My loss of self-started about one and half years into my diagnosis of IC but Dr. Charmaz says loss of self can start even earlier – sometimes even before a diagnosis is made and it will continue to grow from there.

Pre-diagnosis: Doctors can easily discredit our definitions of self when we are seeking help for early symptoms. Without a diagnosis, sometimes doctors view patients with undiagnosed illness as neurotics whose symptoms are either nonexistent or psychosomatic,

Beginning of illness: At first, family and friends demonstrate interest, attentiveness, and assistance, but as time goes on involvement tends to dwindle.

-Worry about burdening others:  Especially your significant other.

-Unpredictability: Having a chronic illness is unpredictable. There are good days and bad days. This can disrupt their lives far beyond physical pain, to the point of quitting work, limiting socialization or even avoiding activity.

-Limitation of life: People with chronic illness might be forced into limiting normal activities to protect their health. This can have a big impact on self-image.

-All Consuming focus: Chronic illness can overtake one’s identity. Illness becomes the focus of one’s life as treatment, living with constant discomfort, medical appointments, and issues with daily activities take over.

What it comes down to is that if you have a chronic illness and you have to give things up that you love… you are not alone. I am right there with you. Thousands upon thousands of other people are standing right there next to you. And we need to recognize this so that when we feel lost we can say that and not feel like we are morons just because we lost our identity. We are more than just one identity… but the feeling of not recognizing yourself is valid.

While reading through information in preparation for this blog I came across an article in Social Work Today called Grieving Chronic Illness and Injury – Infinite Losses. Which is relevant for two reasons, 1) I have chronic illness 2) I’m in grad school to be a social worker. But I think it should resonate with many people because it really hits the points that I’m emphasizing in this post that grieving through chronic illness is okay. It is something that people (i.e. Social workers) are trained to help you cope with.

Isn’t it kind of a relief to know that if social workers are being trained that means it must be somewhat normal? well…somewhat. Either way, the grief might never end. It might just continue on but the best thing that I can do (and you can do) is continue on and try to find the most meaningful life you can live.

 

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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]

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]