I am an information hoarder
I really love my urogynecologist’s office, even though my reasons for being there often stress me out. It is a very holistic practice; in addition to the three doctors in this practice, there are a number of nurses, nurse practitioners, a dietician, physical therapists, and possibly other professionals I have yet to meet. I feel very lucky to be a patient there; I feel that the staff are extremely well educated about treatment options for pelvic issues. Furthermore, I’ve found all of them to be very willing to learn more. (My urogynecologist even told me at a past appointment to “Keep Reading!” up on my conditions.)
A quick glance around the office suite shows it to be similar to other doctors’ offices in that you find anatomy posters and informational brochures and what-not provided by vendors. I wasn’t surprised, then, to see a poster with little tear-off slips in the office restrooms, with three web addresses on them. To my eye, it was pretty clear this poster was provided by some vendor, and investigating the websites this evening, I found I was correct.
Even so, the third website caught my attention, and I’d like to mention it here. It’s called The Accidental Sisterhood. It seems to be focused on pelvic floor physical therapy – which is of special interest to me lately since I am pursuing such physical therapy through my urogynecologist’s office. I have already decided that if I have children, and I have a daughter, I will be teaching her pelvic floor exercises as soon as it’s appropriate. Even if she’s lucky, and does not get interstitial cystitis, chances seem high that she will have some other issue related to her lady bits. I could rattle off a long list of female friends who have PCOS or endometriosis, and more whom I suspect have one of these conditions but have never been diagnosed. I can even name a few people who simply have had slight incontinence issues due to childbirth. To me, teaching my hypothetical daughter pelvic floor exercises just like teaching her to brush her teeth or something: it’s just good hygiene.
Sorry for the rant: back to the website! Given the company I suspect sponsors this website (MedTronic), it is not surprising that the site is especially focused on pelvic floor health and bladder issues. There’s a book about this by the same title – and I’m an avid reader, as you’ve likely figured out – so I ordered it, as well as a DVD and a stylish and discreet voiding journal. They are offering the book free to approximately 3,000 people, so I ended up spending a total of $21 for the book, DVD, journal, and expedited shipping. A pretty good deal, I think (better than their “kit” deal, I think, especially since I already have enough resistance bands to keep me going for awhile). I believe most of the readers of this blog are friends and family, but if you happen to see this entry and you suffer from interstitial cystitis, you might want to check this website out and get yourself a free book.
(I hope this is obvious, by the way, but I’m not being paid by MedTronic to say nice things.)
Forays into cooking
I’ve been on a bit of a cooking spree lately, which is a good thing. I’ve always liked making New Year’s Resolutions, and one of my resolutions for 2010 is to cook more. Here’s a sampling:
Beef Stew, prior to cooking. I’d browned up the beef and some of the veggies beforehand. Pretty good, but I think the potatoes were undercooked.
Some simple lightly breaded chicken pieces. Spiced with basil, garlic, and oregano; coated with Bisquick.
I’m kind of skeptical about how this will turn out. It’s chicken in applesauce – plain organic applesauce (just apples). I sliced up a bit of a Fuji apple I had lying around. I’m not sure about the spices I used: I added coriander, marjoram, rosemary, and…vanilla extract. I added a bunch of water, but then it looked more like apple-broth, so I added the rest of the applesauce to thicken it up again. I really am not quite sure about this venture, but what’s cooking without a few mistakes?
I received a new camera for Christmas, so I’m hoping to take more pictures of the food I make – and also to learn more about taking attractive pictures of food!
Also, I discovered yet another food product that has soy in it – non-stick cooking spray. I looked at a variety of different brands, and they all had soy lecithin in them. Ridiculous!
Choice
During my recent visit to my parents’ home for Christmas, my mother and I discussed my interstitial cystitis and the associated food restrictions. She spoke about her concern about eating certain things in front of me – about how it might make me feel bad because I can’t eat those things.
I immediately responded that it was no different than my past life as a vegetarian, and that she should go ahead and eat those things anyway. She said that it is different; being a vegetarian was my choice.
Well, getting interstitial cystitis was not my choice – but I choose whether or not to eat things that may irritate my bladder. I frequently, consciously choose to eat things that irritate my bladder. No one forces me to do this; no one forces me to follow dietary restrictions. Why is it that when I allow myself to eat badly, it’s a choice – but when I don’t, I’m being oppressed?
I think it’s time to put on my big girl panties and accept that my care is always my choice.
Clearly no one in the TSA has chronic pain issues
I was reading this post on Boing Boing about Northwest Airlines Flight 253 – and found myself concerned by this statement: “As we boarded, the flight attendants announced that all passengers would be prohibited from getting out of their seats (for instance, to go to the toilet) or from using any electronic devices (phones, laptops, games) or having anything on their laps (even a book or a blanket) during the last hour of the flight.” [emphasis mine]
If you know anything about interstitial cystitis, you know that it’s not a good idea to hold it in. It hurts. Generally, I don’t have a big problem with urgency, and I don’t need to urinate every hour. But I can’t precisely plan when I need to go.
Even if I could, the TSA is apparently not doing this on every flight: “These measures are designed to be unpredictable, so passengers should not expect to see the same thing everywhere.”
Frankly, I’m glad I don’t have any international travel planned any time soon. Up until now, I have not had to explain my illness to flight attendants or TSA agents. I imagine this would be a stressful process. First off, I’d need to make sure I had outside information about the illness – I’m sure few flight attendants or TSA agents have heard of interstitial cystitis, and frankly, I’ve met numerous TSA agents who apparently don’t read travel regulations as closely as I do.
Side note: I’ve had unpleasant experiences with TSA agents in the past. I wanted to bring my saline and disinfectant – I wear contact lenses – in my carry-on baggage. Yes, this is allowed, if you declare it to the TSA agents. (I did.) The first time I tried to do this – again, after declaring it to them! – security was called. Loudly. One of the other times I tried to do this, I got questioned about bringing both saline and disinfectant. Again, this is allowed. The second time I got reprimanded I even had a print-out from the TSA website with the relevant section highlighted.
Okay, so, if I’ve had this much trouble with contact lenses, can you imagine how much trouble I’d have with an illness few people have even heard of?
Now let’s think about the actual flight. First off, I’d have to tell a flight attendant, “Um, excuse me, but I’ve heard about this regulation you may or may not be enforcing on this flight – I have a bladder problem, and holding it for an hour will cause me undue pain. So I’d appreciate it if you let me pee if I need to in the last hour of the flight.” How exactly is this going to look to other passengers who also have to pee but don’t have medical conditions? Would the flight attendant then have to explain to everyone that I have a bladder conditions?
These are just a few of the thoughts I have about how traveling with interstitial cystitis would be more difficult thanks to the Transportation Security Administration. I wonder how these regulations do – or will – affect other people with chronic illnesses.
In conclusion, I’d like to offer a big fuck you to Mr. Sizzly Pants.
Learning about food
Tonight I decided to have some Crispy Crowns. I’d thought to myself: they’re just potatoes, they’re fine! I didn’t read the ingredients when I bought them, for fear I would discover an ingredient I couldn’t have. But I read the ingredients tonight. Onions I can understand. Soybeans?
WHY does almost every food I pick up at the grocery store have soy in it? I find it really disconcerting. One of the stranger examples that always comes to mind is cous cous. Near East Roasted Garlic & Olive Oil Cous Cous has soy protein and soy sauce in it. Really? Why is that necessary?
I’m still working on You Don’t Look Sick, and I have a number of other books on chronic illness that I want to read – but when I’m done with them, I’m going to be reading up on the food industry. Here’s a list I’ve put together of books that look promising.
Baby steps
Earlier this week, I saw my urogynecologist. I really like this doctor – he is not only knowledgeable about this condition (his practice specifically focuses on female pelvic pain), but he is also a compassionate medical professional.
We made a few changes to my care regimen. I suggested that I stop taking oral contraceptives, which he agreed was a good idea. My reasoning behind the suggestion is this – I have polycystic ovary syndrome (PCOS), and as such, I do not menstruate often when my hormones are left to their own devices. IC flares are often caused by or worsened by menstrual periods, so many doctors that treat IC have their patients take birth control continuously (skipping the placebo week) in order to suppress those periods. My doctor had me do this – however, what we discovered is that I would have periods anyway. So, my thinking is that if my body does what I need it to do when it’s “left to its own devices,” why not give that a try? So that’s what we’re doing.
We made a few other slight tweaks to other medications, as well. He prescribed dextropropoxyphene (a.k.a. Darvocet) for my bad flares, since ibuprofen has not been very helpful in the past. This is something of an emotional comfort to me. I try not to take it unless necessary, but knowing that it’s there if things get really bad is a relief to me.
I mentioned above that my doctor is a very compassionate individual – this means he spends a lot of time talking to his patients. Unfortunately, this meant that I did not see him until about two hours after the scheduled time for my appointment. Thankfully, the office had wireless internet access, which kept me occupied in the waiting room – but I found myself thinking too much once they beckoned me to the examination room. I recalled my first appointment, and how while waiting for him then, I grew apprehensive. I remembered a few months after that appointment – the night before I went in to have the potassium sensitivity test (one of the ways IC is diagnosed) – calling my parents in tears, late at night, because I was terrified. So, when the doctor and the intern came in and asked how I was doing, I burst into tears.
Again, I have mentioned he is a compassionate person – he was concerned at my tears and was sympathetic when I expressed that I’d found having interstitial cystitis to be especially stressful the last few months. Sometimes, it is enough to have someone tell you that you are not blowing things out of proportion, and that it is normal to be upset in these situations.
I think it was good that I cried, and that I remembered being afraid – I have been so focused on how interstitial cystitis is affecting me now, but it is good, too, to remember and recognize how the diagnosis affected me.
Overall, I think the appointment was a very good thing for me on an emotional level. I had not seen this doctor since February. I had been, by and large, feeling okay – it was not until the very bad flare I had in October that I realized and accepted that I needed to change something. Maybe I was in denial before then – wanting to believe I was “well enough.” So I am glad that I saw him, that we discussed my care, and I feel hopeful about the changes we decided on. I think they will help my condition improve. I feel more in control of my health, too.
I would like to close this entry on a hopeful note. I know that my blog entries have, up until now, been about the emotional rough patches I have been going through. I don’t apologize for those, and I am sure they are not over – in fact, as I noted in my last entry, I will, no doubt, have many periods of anger and frustration with my IC throughout my life.
Still, I want to try to live well. One of the hardest things for me is adjusting to the IC diet. Food has always been a comfort for me, and to have certain foods denied is scary to me. But I am trying, and I hope that I will find recipes and meals that are tasty and worth sharing. That is my plan for my next entry – I will post about food!
The stages of chronic illness
I recently started reading You Don’t Look Sick: Living Well With Invisible Chronic Illness. I’m only about 30 pages into it, but I have already found its words to resonate with my own experiences.
The book is written by two people – Joy Selak, who suffers from a number of chronic illness, including interstitial cystitis, and Dr. Steven Overman, one of her medical professionals. Dr. Overman describes four phases of chronic illness (p. 3) which were originally developed by a social worker by the name of Patricia Fennell. Her phases are crisis, stabilization, resolution, and integration. Dr. Overman sums up the phases and Joy’s experiences with them as follows:
Crisis includes the anger, fear, and loss Joy experienced while getting sick. In the second phase, Stabilization, Joy accepted being sick and began to put into action a plan for managing her illness and her life. During Dr. Fennell’s third phase, Resolution, Joy grieved and truly accepted her illness as a part of her life. Finally, Joy began living well as she found value, meaning, and purpose in her new life during the Integration phase.
Something I think is important to mention – even when you get to integration, or “living well,” you still go through periods of anger and grief.
I think I went through the crisis stage fairly quickly, thanks to my previous experience with PCOS. I was diagnosed quickly. I think I moved on to stabilization, but I feel I have been idling there until recently. I think I am starting to move into resolution; I think the utter depression that has weighed on me for the last month or so is grief. I think it interesting that Dr. Overman notes that Joy began her plan of action with regard to her care. Perhaps others, like me, need to grieve before we can truly put that plan of action into motion.
I have described, to friends, my fear of what is at the end of this depression. I have felt like I am stuck in a dark, deep well, and am holding myself up against the walls, trying not to plummet to the bottom. At the bottom, there is a monster I fear. But my arms and legs are getting tired, and I know that I will soon surrender to gravity, and the monster.
I have been thinking about this metaphor, and I think that the monster represents a death of sorts – death of my life as it currently is, or rather life as I wish it still was, life before IC. What will happen after I surrender to gravity is that I will discover my new life, my new self. I think I am terrified of what I will be like; I think I am terrified that I do not have the strength to live this new life and be this new person.
I daresay that those who love and care for me believe that I do have this strength, and will love the new me as much as they love me now – but selfishly, I need to believe this on my own. And in the immortal words of George Harrison, “It’s gonna take time, a whole lot of precious time; it’s gonna take patience and time to do it, to do it, to do it…” Well, you get the point.
A possible wrinkle
I recently traveled to Monterey, California for a business trip. As I live in the Midwest, I had a longish flight. I found myself uncomfortable sitting for so long – not because of the interstitial cystitis, per se, but because of pain in my tailbone. I’ve often found my interstitial cystitis pain to be centered in my lower back, too.
Some people on the Interstitial Cystitis Network forums have commented that they had some sort of physical trauma which triggered the interstitial cystitis. I’ve been thinking about this. I injured my lower back – I don’t know how – back in November 2007. I remember thinking it was fibroids, but my doctor thought it was an injury and sent me to a physical therapist.
I started having symptoms of interstitial cystitis about 6 months later, in April 2008. (I didn’t understand what it was then – it just felt like pressure – but now I recognize that it was a symptom of IC.)
I’ve been doing a little bit of reading about coccydynia – pain in the coccyx (tailbone). A lot of people talk about seeing a pelvic floor therapist…funny, since those are the same muscles that should be exercised when you have interstitial cystitis. Moreover, it seems not unusual that back injuries could have an effect on one’s urinary system – from a quick search of medical literature.
I really think I might be on to something here. I have an appointment with my specialist in early December – I’m definitely going to bring this up with him. They have pelvic floor rehabilitation specialists in his office, so I may not even need to see someone outside of this practice.
In the meantime, I am going to try doing some of the exercises my physical therapist taught me back in 2007.
It’d be really lovely if I’ve found an answer. It won’t necessarily put my interstitial cystitis into remission, but if I’m right, I think I might experience a nice reduction in pain.
I’m not sure what to think…
It’s early in the morning, and unsurprisingly, I’m awake; I haven’t slept well for the last two weeks or so. I have been thinking about a few things.
On one hand, I am beginning to think I am lucky. As my therapist has pointed out to me, no one is dealt a “perfect hand” genetically. I think that as far as chronic illness goes, interstitial cystitis may not be the worst one to have. Also – there is a chance for remission.
On the other hand, I’m not in remission. I feel crappy, physically and emotionally. I hope one day I will be in remission, but I think I have some ways to go before I can get to that point.
I also think that the “Well, a lot of people have it worse than I do” idea can be dangerous. I think it trivializes one’s own pain. I don’t want to think of myself as a victim, but I do think I need to acknowledge and accept my pain. I think I can do that without letting myself feel like a victim. I hope I can.
It is so difficult to wrap my head, and my heart, around having this. I don’t want to be Miss Merry Sunshine about it. I feel like that way lies denial, and I think I’ve been in denial for awhile now, and it doesn’t help.
