chronic illness

Back in the treatment saddle

Yesterday was the first time that I saw my rheumatologist since my surgery. His first remark was about my weight loss which I’ve come to accept as a bonus. When I wasn’t able to eat at all, I would have rather had my twenty pounds back and been able to hold down something more than jello but at this point, now that I’m able to eat at least a little bit more, I’m quite content maintaining that twenty pound loss. The next topic, of course, was my surgery and the nice string of hospitalizations. It was if he looked me in the eye and knew what I was feeling perfectly. He asked if I had just been in one major flare mode since then and I could have kissed him. Its nice when you get to a point with a doctor where they just know. I explained the joint and muscle pain as well as the crazy hypersensitivity and as I explained, he nodded.

We then went over my history of what worked and didn’t work and together we worked out a plan of action. After nine years of chronic illness, a doctor that invites you to be a participant in your care is one of the good ones. One of the treatments that I had the most success on was Savella. I had really good results for about two years (I was even running again!) before it started to become less effective. I went off this treatment almost 18 months ago so we decided to give it another whirl and keep our fingers crossed that it would once again be effective. The only thing I dread is the initial three or four days as the nausea is absolutely dreadful. We are hoping that by easing in over a period of a week instead of starting at a full dose with help. Either way I am waiting until Friday to start in case I still have those side effects which makes work almost impossible.

This morning I met with my pain specialist and requested changing from pain pills to a patch to see if it will lessen the effects on my GI tract. I am not sure he was upset at my request or if it was just his usual less-than-sunny personality. Either way, he agreed and handed me a new prescription and an appointment to follow up in a month to see how things are progressing.

I know I’ve been on the path to recovery for awhile know but now having a plan to attack my illnesses outside of the surgery/adhesion issues feels really invigorating. Now if I can get some sleep I’ll be golden!

chronic illnessfamily

When Parenting & Illness Collide: Overcoming Pressure When Parenting With Chronic Illness

Overcoming Pressure When Parenting With Chronic Illness
Two words that every parent dreads to hear.

Potty Training.

I don’t know any one person who jumps for joy when it comes to tackling the task of potty training their child.

After Abby turned two, we attempted to begin to introduce her to the potty. We bought her a cute little pink potty. We bought the “Elmo Goes Potty” book to read to her, although she was the most interested in the stickers. No matter what we tried, she just was not interested which we finally came to accept. She would get there in her time.

The day she turned three something clicked. Hallelujah! She declared herself a big girl and proudly sported her big girl panties. Not only was she having success at home but she was doing great at daycare as well. We even started talking to the director about her moving up into the next class (which only happens when a child is fully potty trained).

I would say we were 95% there but then

My emergency obstruction surgery happened.

It all went out the window.

The eight weeks following my surgery where quite chaotic. My initial hospital stay was almost two weeks long. My parents helped keep her at night as John stayed with me at the hospital. They took her to the beach for a couple days to give her something fun to do before I was discharged.

Obviously once I was released from the hospital, I still struggled with pain and fatigue which made nearly impossible to be as active as I would have liked. I was on lifting restriction for weeks and my incision made snuggling difficult. John was doing most of the majority of the parenting at this point and while he tried to keep up the potty routine, Abby was no longer interested. Something changed.

It was also around this time that she started telling people that her mommy no longer lived at home but that I lived in the hospital because my belly was sick.

Six weeks after my surgery I landed back in the hospital with another partial obstruction. One night my mom brought her to visit. As it was getting close to time for her to leave, she had an epic meltdown. EPIC. Like something you only see in movies epic.

Once I finally got her calmed down enough to talk, she said she didn’t want mommy to be in the hospital anymore and wanted me to go home with her.

My heart shattered into a million pieces.

Obviously I’ve grown quite accustomed to how chronic illness has affected my life. After almost ten years together, my husband is not shy about sharing how he feels either.

But my daughter

my child

my heart

does not have the luxury of being able to verbalize how my illness affects her at three years old. Instead it shows through her actions. The tantrums and the reverting are ways of showing me how the uncertainty (and sometimes chaos) of my illness affects her understanding and her security. When her sense of normal is shifted (such as one parent being hospitalized for almost three weeks in a six week period), her whole self is affected. The last day she was with my parents she told my mom that she was sad and when my mom asked why she said it was because she knew that her mommy was never going to get any better because her belly was too sick.

This hit me hard.

I’m not sure how many tears I’ve cried thinking about it.

I struggled with guilt and shame knowing how unfair it is for her to have to worry about whether or not her mommy is going to be able to pick her up or get in the floor to play in the floor with her. She depends on me and I hate that sometimes my illness makes me feel undependable since you cannot always predict a flare. I spent so much time beating myself up. I cried out to God why this had to happen. It hurt. A lot.

Parenting with chronic illness is hard y’all.

On everyone.

Its hard on the parent with the illness. Its hard on the parent who ends up being the caregiver to both the sick spouse and the child. And its hard on the child. It is definitely a difficult triangle to maneuver.

The one thing that this whole experience has taught me was how valuable each moment can be. And how important how important it is to soak up each and every minute of a good day and how to make alterations to make even the bad days memorable.

Now what does this have to do with potty training?

I am proud to report as we settled back into a slightly new normal (which included me getting my strength back) and got back into the rhythm of our family, potty training is back on track and the “Pee-pee In The Potty” dance Abby and I created has become a regular occurrence.

Even 3 year olds need to have a new kind of normal.