All of our kids have anxiety. And it presents differently in each of them. Some people might think that because I have suffered from anxiety since the day I was born, according to my parents, that it means I am well prepared to help my kids navigate their lives with anxiety. The truth is, sometimes I don’t even recognize right away that one of their behaviors is anxiety related.
It’s the same for me. Anxiety began to present very differently after I had my babies. PPA (post partum anxiety) was a beast I was unprepared to encounter. It presented in a more physical way, with actual physical symptoms that perplexed even my doctors.
With my kids, as they grow and experience new things, anxiety evolves as well. Navigating the preteen years with our oldest I can see his social anxiety present along with his tendency towards defiance. So I’m realizing that while some of the behaviors are typical for a preteen, some may need to be addressed from a mental health perspective. Our younger preteen also has physical symptoms at times. And our toddler I am honestly still trying to figure out from minute to minute, because, toddlers…
Coparenting During the Holidays
Coparenting during the holiday season is one of the more difficult aspects for me. I remember the first year I spent the holidays with my now husband. My son was with his dad for Christmas. One of the reasons I was so sure this man would become my husband is because of the way he rallied around me to help me stay busy and have a great Christmas, despite missing my then 2 year old so much it was visceral.
It honestly hasn’t gotten easier. My son is 10 now. I miss him on weekends he’s with his dad. Even more on holidays. For me, holidays are about family. So having a piece of my heart missing during holidays is rough.
What I try to remember though, is that if I want my son to grow up valuing family, that means spending holidays with his dad’s side of the family is also important. So I put on a smile, encourage him to have a great time, and I allow myself to enjoy the holiday knowing he is with family.
To the other coparents out there feeling this way during the holidays, I get it. Sharing a kid is never easy. The beautiful thing is, this also means they are loved on and feel at home in two different households.
Mourning my pre-diagnosis self
This is a tough post. It will be the last for a while about chronic illness. I will say again, as I said in my first of these three posts about my life with this disease, that this isn’t how I anticipated beginning my blogging journey. I wanted to start with something lighter. Maybe something like my tweets or memes, humor. This is my life though. I will write about it and share as I experience it, in an effort to be as transparent as possible. This is me.
Mourning. Grief. Stages of grief. Grieving the loss of my health has been enlightening. With chronic illness there can be visceral, daily reminders of a life that is dead. Then things get better, then worse. I will never be the same person I was. My life hardly resembles the life I had before diagnosis. Before I dealt with daily pain. Daily anxiety. Daily frustration. Daily feelings of inadequacy.
For me, the stages of grief are not linear. I feel I have a roller coaster of grief that can go in any direction and skip steps. Or maybe an evolving spectrum of grief.
After the procedure I had (that I discussed in the first two posts in this series) I should have experienced a reprieve in symptoms. Instead, I have had a worsening of symptoms. So, I’ve gone from hope to mourning. It’s not quite like the loss I experienced after diagnosis, but similar. I don’t know what my body will do next. Will it heal because this is just a flare (a temporary worsening of symptoms), or is this increase in symptoms my new normal? Time will tell. I will take it day by day.
I was going to go back to work part time this fall. How does a nurse care for the heath of others when they are in debilitating pain every day? Is that safe? For me, no. The interruption caused by this disease in my every day life is high right now. However, it hasn’t stopped me from enrolling every one of our children in sports. It hasn’t stopped me from committing to a women’s group. It won’t stop me from doing most of my activities. I might not be able to do these things as quickly or as well as someone without chronic illness. But I will live my life as fully as possible. This disease does not define me. Don’t get me wrong, there are moments I feel sorry for myself. But I have trained myself to focus on gratitude in those moments, after I feel whatever I’m feeling. Grieving whatever part of myself I might be losing.
I want to say something really important. I am not sharing this to complain or draw sympathy. If anything I tend to hide my symptoms and how they have changed my life. If you met me in person, you would have no idea what I deal with daily. When I do get close enough to tell someone, they are always surprised. My motive for sharing this part of me in my blog is to educate mostly. Also to reach those that might relate. I have found comfort in putting my thoughts and feelings in black and white.
This is just one part of myself. My next posts will cover other interests. Cooking, traveling, parenting. Though I will, in the near future, discuss chronic illness as a general topic. Thank you for reading. If you have questions, feel free to post them in the comments. Love to you all.
Post procedure post
Well folks. It’s officially been two weeks since my procedure. I had high hopes as this procedure made a world of difference last year. If anyone is interested after reading my last article, I had a procedure called a cystoscopy with hydrodistention. The theory is that by stretching the bladder and filling it with medications, it will force the innermost layer of the bladder that is damaged to heal. At least temporarily.
This year I am one of the lucky ones with post procedure complications. I now have an infection. Likely kidney infection at this point. Fever, flank pain, exhaustion, oh my. I’m starting antibiotics today and should be fine.
This is the reality of living with a chronic illness that lacks consistent and easily accessed treatment options. You do what you can, and re-evaluate if necessary. Because of the infection, I am in pain. More than before my procedure at this point. I probably caught the infection late because I’m so used to bladder and flank pain, as they are both symptoms of IC.
So after this course of antibiotics we will see if the procedure was successful. And by successful, I mean about 6 months to a year of some degree of relief.
I won’t lie, this is disappointing. I have been parenting and not resting since the procedure. Life with chronic illness as a parent is like this. As much as you need to put yourself first, it’s just not always possible. Parenting is exhausting and hard for everyone. For those of us with invisible illness, we may look ok on the outside, and try to act ok on the outside, but often times we are anything but ok.
At times like this, I know I’m very fortunate. Not everyone with chronic illness has a support system. I have my mom close by to help when I needed to stay in bed today. And nurse friends that I can vent to about my frustrations with the medical system. I have a fantastic doctor who started her own practice because she was fed up with how IC patients were being treated by her colleagues. And of course I have a husband that loves me.
Sometimes I don’t ask for help as quickly as I should. Often I try to pretend that I’m ok so much that I convince myself I am, when I’m not. I working on that.
An introduction to my chronic illness
One of the topics I will discuss in my blog is parenting with chronic illness. I hope to be able to take a general view at times that will be relatable to anyone with a chronic health diagnosis. However, I would like to open up a little in this post about my diagnosis. I debated about whether to write so soon after starting my blog about this. However, this is what I am going through right now. I actually have a procedure scheduled this week to hopefully improve my symptoms. So, this topic is weighing heavily on my mind.
I was diagnosed with Interstitial Cystitis in 2013. This disease causes inflammation and damage to the bladder wall, which leads to urinary frequency, urgency, and pain. In fact, it can be so painful that it is frequently listed as one of the most painful conditions, even more painful than kidney stones and post surgical pain. As a nurse, I can say that from what I have seen, this is likely fairly accurate. No one knows what causes it. Some possibilities include autoimmune disease, mast cell abnormalities, trauma, and vascular disease.
I remember the exact moment I had my first symptoms. I woke up one morning and just knew I must have a urinary tract infection. I’d had one before, and I knew what it felt like. I also knew I needed to drink lots of water and go to the doctor to get my urine tested and get antibiotics.
When I got the the physician’s office, after some testing I was told that I, in fact, did not have an infection of any kind. I was treated for an infection anyways. My symptoms did not improve, obviously. The symptoms for a urinary tract infection and IC are very similar. Some people with IC go for long time without being diagnosed and are treated with antibiotics, even though there isn’t bacteria to kill.
For my follow up appointment, my symptoms were entered into a computer and the computer suggested ruling out other pelvic area issues. We did an ultrasound and other tests. Nothing abnormal was found. I was therefore diagnosed with interstitial cystitis. It is a diagnosis of exclusion. This means there isn’t a test to diagnose it, it’s diagnosed after other things have been ruled out, and based on symptoms. Although, the bladder of someone with IC may look damaged when viewed during a procedure called a hydrodistention with cystoscopy, where the bladder is filled with fluid and viewed with a small camera.
There is no cure for IC. There are very few treatments that are largely effective. The majority of people diagnosed are female. Some urologists won’t treat people with IC. Some of them that do are very un-empathetic, in my experience and based on what I have heard from others in online support groups. I have left 4 urology offices in tears more than I can count. I am fortunate enough to have a very knowledgable and compassionate urologist at the moment. She is close to retirement and it is a constant fear for me about whether or not I will find a new specialist that will continue my current treatment plan.
There is a procedure I have tomorrow under general anesthesia that might relieve my symptoms for a period of time. As a nurse I’ve asked countless patients to rate their pain on a scale of 1-10 for me. I live at a 3 normally. Sometimes it’s better, but sometimes I live and have to function at a 6 or 7. I grieved the way of life I once had after my diagnosis. Now I have learned to make adjustments. My kids have had to make adjustments. I went through nursing school, marriage, and a pregnancy with this disease. All of which I will go into more detail about in other posts.
Thank you for reading this. I hope that by sharing my story some will relate and feel less alone, while others will learn about chronic illness.
Hello world!
Welcome to my first post! I want to share a little more beyond my About Me page, to give you an idea of my mission for this blog.
I hope that I will be able to share my experience in a way that is relatable. I will talk about my experiences in life and topics that I hope will be interesting and engaging. Sometimes I’ll use humor and sometimes I’ll talk about more serious issues. If I delve into a topic that might be upsetting, I’ll add a trigger warning. I will always be real and I hope to hear from y’all!
Please go check out my About Me page!