Life · mental health

The Chronicles of Chronic Illness

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Those of you who read my blog regularly know that I am not shy about discussing my health problems, both mental and physical. As someone who has been plagued with mental health issues since a pretty young age, I know all the ins and outs of my mental state and how to talk about it. The past six months I’ve, unfortunately, been learning the ins and outs of my physical state, as well. Due to constant kidney/urinary infections and intense kidney pains, I’ve had more doctors’ visits that I can even remember. I’ve had various procedures done, been on at least five different antibiotics, and seen two different specialists. It’s been frustrating and expensive, to say the least.

Finally, after months of dealing with all of that, my urologist thinks they have solved The Great Kidney Mystery. They’ve diagnosed me with a disease called Interstitial Cystitis. A ton of research hasn’t been done on this condition, despite the fact that millions of (mostly) women have been diagnosed with it. The cause of IC is still unknown, but what happens is that you have irritation and chronic inflammation in the lining of your bladder. This creates different symptoms for different people, but the common symptoms include pain in your bladder/pelvic area, stomach pains, frequency to urinate, feeling like your bladder is always full, and sometimes blood. You pretty much feel like you have a UTI most of the time, even though you don’t actually have an infection. For me, this has also led to kidney pain and a few actual infections. Through all of this we have also learned that my right kidney is much smaller than my left one, which may explain the cause of frequent infections, as well.

So, what do they do to treat IC? Not a whole lot. For starters, I have to learn what foods and beverages are more likely to irritate my already irritated bladder/kidney. There’s a laundry list of things that might do this. The biggest offenders are caffeinated and acidic foods: coffee, chocolate, alcohol, fruit, spicy foods, tomatoes…pretty much everything I like. I either have to figure out which foods are “bad” for me and either avoid them completely or take anti-acid pills with them. The pills are helping a bit, so far, but it’s not a perfect system. Having a restrictive diet for any reason is majorly problematic for me, given my eating disorder. The fact that I’ve been doing so well with food the last few months makes this situation really upsetting. It’s like no matter how hard I try, I can never just be “better” for a while. I’m finally over my eating disorder relapse and enjoying food/life again and now it’s like “Oh wait, just kidding. Time to create more problems.” 😦

Other than dealing with trigger foods and whatnot, there’s physical therapy that can be done. (Honestly, I don’t even know what this is for yet. Something about relaxing the pelvic floor muscles?) There’s also medication that I could technically take for when my bladder symptoms are really bad. The problem, however, is that you can’t take them with anti-depressants. So that pretty much just means I’m screwed, because I can’t stop taking my meds.

You’d think I’d be rejoicing at finally having a diagnosis, right? If I’m being honest, I’ll admit that I’m actually pretty upset by all of this. I think deep down I was expecting/hoping them to finally figure out the problem, then fix it. Even if it had involved surgery, I was okay with it, as long as the problem went away. Instead, I’m being told that I have a chronic illness that’s likely to cause me problems for the rest of my life. Given that I’m only 30 years old, that could be a long time. It was bad enough trying to deal with my mental health issues, but now I get to deal with chronic pain on top of it. 😥

I’m trying really hard to remain positive. I’m reading up on tips and suggestions that other people with IC have shared. This hasn’t really made me feel much better though, as most of these people sound like they’re pretty miserable half the time. It doesn’t help that I already feel like my support on this is lacking. Since the disease is uncommon, I imagine that most people just won’t “get it.” I actually tried to discuss it with someone earlier this week and was met with some very unhelpful comments that actually made me feel a lot worse.

At the moment, I’m PMSing, which is a terrible enough time for me because of the fact that my depression gets way worse. It also causes my bladder/kidneys to hurt more. My brain is already having a field day with this, telling me all the reasons I should feel sorry for myself. *sigh* I’m trying really hard not to fall into that mindset and remain positive about this, but it’s tough. This is new ground for me and I honestly don’t know what to do or what to expect.

If anyone out there has any feedback or tips to share, I am always willing to listen. Tomorrow we will return to our regularly scheduled bookish discussions.

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15 thoughts on “The Chronicles of Chronic Illness

  1. What a pain (literally in your case). I hope you find ways of relieving your symptoms. Are there any kidney forums out there that might help you out? All I can suggest is to drink lots, because that is what they always say when it comes to UTIs. I feel for you. I had kidney reflux when I was a child and teenager and I had UTIs all the time. I was on prophylactic antibiotics for many years because of it.

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  2. Ahoy there matey! I want to send ye a more personal message then this format allows but don’t know if ye be interested. I did add ye as a Goodreads friend today because I somehow missed that before! If ye be interested in getting some thoughts via email then send me a message at thecaptainsquartersblog at gmail dot com. If not that’s cool too. Just want ye to know that yer not alone and that I care. And I am so sorry yer goin’ through this. Stay strong! Arrr!
    x The Captain

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  3. I’m so sorry to hear this news. While I can’t relate to the kind of hardship you’re facing, I can share what works for me when I find I’m wanting to feel sorry for myself. I go on youtube, and I search motivation. Sounds cheesy, I know. But there are all these videos that people have cut together of motivational speakers, combined with cinematic soundtracks, and footage of athletes and shit. (you don’t really need to watch. I just listen.)

    Eric Thomas and (believe it or not) Tyrese Gibson are some of my faves. But some of the cuts on youtube are an hour long and it’ll give you a wide assortment of voices and outlooks on life.

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    1. I’ve started looking into motivational stuff the last few months. Meditation, also. It doesn’t always help (there’s some really weird shit out there, lol), but I’ve found positivy in some of it. Thank you for the suggestion, I really appreciate it. ❤

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  4. Hey Kiersten, I’m so sorry to hear that you are having to go through so much pain and frustration. I also deal with chronic pain. Mine is in my neck and shoulders, so it’s a bit different, but I’ve also had so many frustrating doctors visits and fear about what the rest of my life is going to look like. I don’t really have any advice to offer, since I’m going through something similar myself, but I just wanted to say that I’m there with you, and you aren’t alone. I hope that your doctor can find solutions and healing for you soon.

    Liked by 1 person

    1. Thank you, I really appreciate it. I’m sorry you are dealing with something similar. It can be SO frustrating. If you ever need to vent, I’m happy to give you my email. I hope you find some comfort soon, no matter how small. ❤

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  5. Hey lady. The simple fact that you have a diagnosis now is good news. You now have a starting point to getting better. You know I’m with you all the way. Remember to ask questions, lots of questions, of your doctor(s), friends and the internet. Just be sure and cross check anything from the web. There are way too many pretenders out there. If your insurance (and time off) allow, get a second opinion. Any good doctor understands the need for a second set of eyes on anything. You know how to get a hold of me!
    Peace,
    B

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    1. Thank you. Deep down I know it’s good that I finally have a diagnosis because now I can just learn how to deal with it and move forward. I keep reminding myself that it could be SO much worse. Then the pain flares up or something and I just want to cry and feel sorry for myself. I’m trying really hard not to do that and to be proactive about all of this, but I guess I’m still learning. It’s still new and scary and I have no idea what to expect in the long run.

      I did learn about some interesting treatment options recently, which can help relieve pain/symptoms for months at a time. One of them involves injecting Botox into the bladder. Do you think it would make my bladder look younger?! 😛

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  6. Hi, I am someone who also lives with mental illness and physical problems that cannot be cured and I understand. I hope that they get to the bottom of what food work for you and are supporting you to to cope. It sounds so painful (I’ve had regular cystitis and that was awful enough)

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    1. Hi there! I’m sorry to hear that you also have similar issues. Just in the last few weeks alone I’ve had so many people say “Hey, me too.” It’s nice that we can all support each other, at least. Thank you so much for commenting. If you ever need to vent about your issues, I am always here.

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      1. When I spoke out about my mental health on my Facebook I had people private messaging me telling me they were secretly battling with various mental health issues too. I think it is more widespread than people think. 🙂 Thank you, a the same goes for you. If you need to vent, I am here. 🙂 – Tasha

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  7. I’m sorry you’re going through so much pain. I haven’t experienced this, but I’ve had UTIs and I can’t imagine feeling like I had one all the time. I hope you find a pain management system that helps you soon. Have you looked on any online forums? Maybe even Reddit? Maybe you’ll find something that will help there.

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    1. Thank you. It’s frustrating, but I’m learning how to make it better. I’ve looked at one or two forums so far, but they weren’t quite what I was looking for. They were mostly people talking about how bad their symptoms were, which freaked me out. I’ll have to keep looking for the right one.

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