These posts cover physical health issues including fibromyalgia and interstitial cystitis. Freelance journalist and blogger, Stacey A. Shannon, has spent nearly two decade covering pelvic health and dealt with her own health struggles she shares about here.
Learning to celebrate the positive instead of focusing on the negative
Last week, I had an appointment with my urologist. I hadn’t seen him for a year. A year! I had called in with one issue in that entire year and that was pretty quickly resolved.
When I was at my appointment, I realized I don’t know most of the staff any more. I used to know them by name and even some personal life information from some of them.
My doctor and I talked about how my medicine I’ve been taking for a long time still seems to be hanging in there and working for me. We smiled together about how nice it was to have a quick and easy appointment where I mostly just got refills for my prescriptions.
It hasn’t always been that way. About 17 years ago, I first started going to this urologist. We were both younger back then. I was miserable, though. He worked with me on all sorts of different treatments. I’ve tried so very many things through the years. At one point, he told me I’d reach the limit of what he knew to do, and he would suggest another urologist in a larger city.
At yet another point I saw a urologist a state and four hours away who did help me as well. But, my local urologist has been my main go-to guy for my interstitial cystitis for almost two decades. And being able to see him once a year right now and not be miserable going into his office is a blessing.
The thing about IC, like with most chronic pain conditions, is that it can wax and wane. Just because my symptoms are mostly under control right now doesn’t mean it will always be this way. Right now I have to take my medicine and be careful of my dietary trigger foods, but otherwise, my bladder issues are pretty stinking good most days. (Truthfully, right now my biggest issue is my fibromyalgia symptoms.)
I could focus on how it could all come back full force any moment. Or I could think about how the surgery I had a year and a half ago could undo itself any minute (which is a definite possibility). But I have learned through the years to take the wins when they happen. Focusing on the negative facts of my health takes away from the joy of the positive facts. Because of those hard times and really difficult days I appreciate the good ones all the more.
Combine this good appointment with attending the annual meeting of the American Urological Association earlier this month on assignment for IC Optimist magazine and IC has been on my mind even more than usual lately. Though I’ve gone to these meetings before, it had been about a decade since I was last able to go. I’ve been processing all I learned and writing about it over the last couple of weeks.
I was reminded there are lots of doctors who really, truly care about IC patients and helping us get answers and feel better. I was also reminded, though, about how bad IC can get as I heard different struggles with studies and treatments. I have been at some of those really bad points and there are other really bad points with IC that I haven’t been to.
All of that combined to make me feel incredibly grateful as I walked out of my urology appointment last week. I tucked my appointment card with an appointment a year away in my pocket. I am thankful. I may not be able to wait yet another year until I go back to see my urologist. Or I may. I have another appointment next month with a urogynecologist in Michigan to follow up with him from my surgery a year and a half ago. I don’t anticipate bad news at that appointment, but I can’t predict the future.
I just know the now. The now isn’t perfect. Pain free days don’t really happen thanks to my fibro, but there are many low-pain days. There are days that I don’t give my bladder much extra thought, and I am so incredibly thankful for them and blessed by them. That is victory in chronic pain and illness!
I was 3 when my bladder issues first started. Though they waxed and waned through different parts of my childhood, they came back with a vengeance when I was 23 and have stuck around ever since. A few years ago, they added their friend fibromyalgia into the mix.
I am a different patient today than I was 17 years ago. I’ve learned lesson after lesson throughout all the different journeys my health has taken me on.
1. I have to be my own advocate.
The two health issues I have, interstitial cystitis and fibromyalgia, aren’t always well known, even in the medical community. In fact, there are still doctors who don’t believe either condition exists. I learned early on that sometimes I have to push for what I need. I have to be the proverbial squeaky wheel to get some grease. At the end of the day, the receptionist, nurse or physician isn’t the one who is going home and living with the pain and issues that I have. As a quiet person, this was something that I struggled with in the beginning, especially because when I’m not feeling well or in pain I get even quieter. I have learned to speak up for myself, respectfully, and push to get the help I need.
Part of that also includes doing my own research. I have brought in research to my doctor before and asked to try different medications or treatments. I have found research for self-help strategies that really have made a difference in my pain, like figuring out all of my dietary triggers for IC. (I highly recommend Confident Choices for IC diet help!)
2. Doctors don’t know everything.
Doctors are in a position of authority. And they are usually smart folks who know more about health issues than the average person. But they don’t know everything. I have seen good doctors, great doctors and awful doctors. In being my own advocate, I learned that if a doctor didn’t have good enough answers for me that it was OK to move on to someone else. I have done so.
A couple of years ago, I was having increased pain in my pelvis. My local gynecologist determined the problem, but he was too afraid to help me because of my vast pelvic history. He sent me to a specialist an hour away. It was one of the worst doctor’s appointments I’ve ever been to — and that’s saying a lot. He insisted it was quite impossible for me to be feeling pain and if I was then I should just go to a pain clinic because I have chronic pain conditions. I knew something was wrong and needed fixed.
I reached out to a doctor I’d seen a couple of years before who is a leading IC expert for a recommendation. He suggested I see his colleague. It was a four-hour drive that was well worth it. He operated, and I’ve spent the last year and a half since feeling much better. I certainly have no regrets for getting an additional opinion.
3. If you have an insurance coverage question, get the procedure code before calling.
Part of managing a chronic illness and advocating for yourself is dealing with health insurance. I have learned to call for major procedures and double-check my coverage, even when a doctor’s staff told me they had checked. The best way to get the most accurate coverage information is to get the procedure code from the doctor’s office. Once I didn’t do that and what I thought was going to be a $25 co-pay ended up being $500! Since then, I always ask the doctor’s office for the code when I need to call the insurance and check on my coverage. When in doubt, check it out!
4. Don’t rely on doctors to have your files or send them to other doctors.
Usually having a chronic illness means you are seeing a couple of different doctors. In addition to my general practitioner, I see some specialists. I have found it’s a good idea to get copies of my records when I really need another doctor to have them because the records don’t always end up where they are supposed to be, especially if it is a quick turnaround time.
This is especially important if you are seeing a doctor away from the city where you live. My most recent surgery was with the specialist that is four hours away from me. While I stayed up in the area a couple of days post-op, I made sure to have copies of my surgery notes with me when we left to drive back home in case I had a complication and needed to see a doctor locally.
5. Keep a list of medications and surgeries.
I have been through phases where my list of medications changed almost monthly. Keeping my list up to date is important so if I have another appointment or a medical emergency, I can list what I’m taking and how much. I keep it in a Word document on my computer that I update as needed.
I found that keeping a list of surgeries and their dates (and even doctors and location) is also helpful. Any time you go to a new doctor for any reason, you have to list all of that information, so having it handy in a document that you can update is just helpful. If you keep copies of your medical records (I do for my pelvic history since I’ve had a few surgeries, all by different doctors), you could easily print out your med and surgery list to keep with them. Then everything is in one handy location.
6. Other patients can be so helpful along the way.
I am not sure I can fully put into words what connecting with other patients has meant to me. I have made some very good friends this way. I have connected with people with whom my path would never have crossed otherwise, and I am thankful for that. When I was going through a rough time of dealing with my bladder issues as a 13-year-old, I didn’t know anyone else who had the same struggle. A decade later, the Internet was around, and I found a patient group online that was eye-opening to me. Things I thought were just different about me turned out to be common in other IC patients. The IC Network has an incredibly helpful and moderated patient forum. That forum has given me so much encouragement and self-help ideas for which I’m beyond grateful.
And all that said, you do have to be cautious in patient groups when it comes to medical advice. People who are dealing with pain are often grasping at anything to help them feel better but not all advice from other patients is good or even helpful. Definitely do your own research!
7. God is always faithful, even when He doesn’t heal you.
As a Christian, healing has come up for me. I have battled with it. I have wrestled with it. I have prayed for it. I have had others pray for it. Once I went into remission, which I took as an answer to prayer for healing. I was shaken when my symptoms came screaming back into my life a few years later as a young woman.
While this really, truly could be a whole other post and one day will be, I can tell you that I have found God to be faithful and good every single step of the way even when I didn’t understand why I hurt. He has been faithful to me even though I am not healed. I can tell you that after I wrestled with this for a few years, I felt God telling me that I will be healed in heaven. And then I began to pray for healing from my need to be healed. God was faithful to help me with that need.
I would love to be healed — don’t get me wrong — but it doesn’t define me or run obsessively through my mind. I have learned that no matter how hard the mountain gets to climb that God is always there, carrying me up the mountain. He’s never left me on my own. There were times I put my hope in doctors and in treatments until the day God reminded me He is my only hope. So while I may wish that a treatment would work and try different things, I have learned that whether the treatment works or fails, God is always there and will be with me.
8. Don’t be angry with people who don’t understand.
No matter what your struggle is in life, it’s hard for people to understand it precisely because they haven’t lived it. I’ve had people try to be helpful and tell me about the latest treatment idea they’ve come across. Not once has that actually been helpful. In fact, usually the very suggestions being made would actually make me feel worse instead of better. I have learned to instead just change the topic.
The fact of the matter is, most people aren’t going to understand your life and your struggles — no matter what kind of struggles you have. Even now in my life being open about my health struggles, my husband is the only person who comes closest to knowing what I really deal with on a daily basis. If you see me in person, chances are I won’t even tell you about my health struggles or daily battles I fight. So I really can’t get angry when someone doesn’t understand.
9. I am more than my health condition.
Living with a chronic health condition is a daily issue. There are no vacations or breaks. There is no escaping it. There may be good days or weeks. But it’s always there lurking. However, I am so much more than interstitial cystitis and fibromyalgia. I am a mom, a wife, a daughter, a journalist, a friend and more. I have more to talk about and think about than my health.
If I let it, my health issues can consume my thoughts. That’s not healthy in any way. When I feel myself slipping into that, I pray for help and I work to focus on what I have. Because my health issues haven’t taken everything from me. I have way more blessings than I do health issues. And that’s what I have to remember on the hard days.
10. I have to let other people be sick, too.
This sounds so silly. I know it does, but it’s something I’ve worked on. I still work on it a bit, to be honest with you. I hear people talking about an acute pain or sickness and I want to roll my eyes sometimes. I want to say, “Imagine living like that every day! Imagine if you felt like you had the flu, five pulled muscles and a UTI all at the same time every single day. Then talk to me about it!”
Fortunately, I bite my tongue. Because my suffering doesn’t make their suffering any less. They are still suffering. God has worked on me to help me become more sympathetic and empathetic. I can often spot someone in pain before anyone else. I know the signs of living like a “normal person” with pain. I can have compassion when someone is hurt because I know what pain feels like. I may have more of it, but I also know how debilitating and disheartening it can be to live with pain, whether acute or chronic. I know what I want people to say to me. The truth is, none of us wants to hear about anyone else’s difficulties when we are struggling. So I keep those to myself and offer encouragement and prayer instead.
About a month ago, I shared with you about my experiences with anxiety and depression on spring break. One of the things I mentioned in that post was seeing a new doctor for my fibromyalgia who prescribed physical therapy for me, including aquatic therapy.
While I’ve done physical therapy many times throughout my adult life for a variety of body parts (that should have been my first clue to fibromyalgia!), I hadn’t done aquatic therapy before. I felt anxious going to the pool the first day for a few reasons.
First, being in your bathing suit in front of strangers is just not fun. Bathing suits feel so very exposed.
Second, I was nervous about how my bladder would handle the chlorine. Chlorine tends to flare my interstitial cystitis bladder symptoms.
Third, I didn’t really know what to expect. Any time I don’t know what to expect, I get anxious. I like to be prepared.
I have to say, I was pleasantly surprised. The physical therapist I was assigned to was great. He had a positive attitude and put me at ease from the very beginning for which I’m thankful.
The chlorine did bother my bladder but only a minimal amount. The hardest times were when I went more than once a week. But it was manageable.
By the second day in the pool, I was being led through the paces by the student physical therapist. She also did a good job. As we started chatting through my various appointments, I learned that she is a mom and has three little ones. Her oldest two are close in age to my two. Her youngest is a preschooler.
As she opened up more with me, I learned that she works 40 hours doing her training for physical therapy and then works her regular job for an income on the weekend. On the weekend, she puts in another full 40 hours. Yeah. I’m exhausted just hearing that. Seriously.
I was struck by the two of us side-by-side in the water. We were both there for the same reason as moms: we are determined to make a better life for our families. She wants to have training for a job that will eventually mean she can work better hours for more money. I want to do whatever I can to help my body be able to move easier so I can do more with my family. We are doing different things, but our motivation and determination are the same.
I remember thinking the first day with her that she had a lower energy than the other physical therapist. She was totally fine, engaging and helpful but just a bit less energetic. I figured it was just her personality difference. Once I learned her story, I am just impressed that she is upright. Seriously. Being a mom and working 80 hours, seven days a week is tough! I couldn’t do it. But then again that’s part of why I was there. There are quite a few things I can’t do. My body won’t cooperate.
I don’t know if physical therapy will actually help me. I’m finished with the aquatic sessions. I’m going to keep doing some stretches, but I’ve been discouraged this last week with it. I’m feeling worse rather than better, which is frustrating. However, I’m trying. I’m working at it and doing my best.
Physical therapy may not help me feel better, but that doesn’t mean I won’t keep trying. Because I want better for my family and for myself. I want to not have to worry about how far we are walking somewhere or whether I can both fold laundry and go grocery shopping in the same day. I want to not have as many days that I have to say no to my son when he asks me to push him on the swing after school because my arms or back hurt too much.
And the student physical therapist I worked with is looking forward to graduation in a couple of weeks. She’s excited to earn a better income, work only Monday through Friday and have more time with her kids. Her job won’t be perfect, because nothing is, but she’s moving forward, which is the goal we both have.
Just like pretty much every other mom you know, we are working hard to be the best we can be for our families. Moms are determined to keep going even when it’s challenging because we love our families too much to do it any other way!
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