chronic illness

Anxious About Reoccurrence

I am not going to lie. My anxiety is currently sky-high.

263 days ago I had emergency surgery for a small bowel obstruction caused by adhesions from my latest laparatomy for endometriosis.

Every day since I have lived in fear that I would have another.

Lately my fear has been even greater as the nausea, inability to eat, and pain that I experienced in the days and weeks leading up to my obstruction have returned. Friday I was thisclose to heading to the ER.

Prior to this obstruction experience, I was a surgery vet. The biggest anxiety I had about the whole ordeal was whether or not the nurse would be able to start an IV without resticking me a million times. Once the IV was set, I was good to go.

Not anymore. I think that everything progressed so quickly from the moment the doctor announced I needed surgery to the fact that I cannot remember the initial 72 hours post-op to having to knowing how hard the whole ordeal was on Abby has scarred me.

Another scary thought? There isn’t a darn thing I can do to prevent it from happening again. Actually because of my history, there is a likely chance that it will happen again.

Tomorrow, I see my gastroenterologist. I’m not sure what they are going to say or do but to say that I am not scared of my mind would be a lie.

If you have a moment around 3pm, please say a prayer!

chronic illness

Chronic Illness Survival Kits

Spoonie-Survival-Kits

The prompt for Day 9 of National Health Blog Post Month included preparing care packages and I have written several posts creating different types of survival kits so I thought I would share them!

1- Bowel Prep Survival Kit – If you ever had to prepare for a colonoscopy, you may want to check out this post! Because of my celiac disease, I have to have yearly EGDs (which are a much easier prep!) but I still have to have routine colonoscopies and I have had to perform bowel preps for surgery so I have survived my share of preps.

2- Surgery Survival Kit – Six surgeries in eight years has turned me into quite an expert so I have gathered some of my favorite items that I recommend to include in creating a care kit if you have a friend or loved one preparing for surgery or is in the hospital!

3- Flare Survival Kit – I asked on Facebook what fellow spoonies included in their “flare survival kits” that made getting through a flare a little more tolerable and this is the list of responses! I definitely got some great ideas of things to keep on hand to allow myself to be a little more comfortable the next time a flare rolls around!

If you had to create a “chronic illness survival kit,” what would you include?

chronic illness

Rediscovering My Identity

Earlier today I was thinking back to life before chronic illness. How I feel now versus how I felt then. Now I’m not talking about physically. It’s easy to focus on the physical differences between now and then and the things that I could do then than I cannot do now such as running or climbing.

I’m talking about how I feel on the inside. My confidence. My sass. My spunk.

Sadly, I think a lot of that has gone. Granted, I’ve admitted I’ve always been quiet and introverted but still there was a spark. I know there was. I felt it.

It wasn’t about beauty or attractiveness on any type of physical level. It was about feeling comfortable in my skin and how I was and feeling like I could own that.

I think over the last few years the physical drain of the illness is in itself has obviously been a pretty significant part of it but I think there are so many times where I just feel so defeated and almost betrayed by my body so its hard to feel comfort in my own skin when I feel it has almost turned against me. My body itself has changed. I have struggled with my weight since coming ill and even when I feel successful in my weight loss journey, my shape has changed so I’m curvier in some places than In once was. My new scar as also been a big struggle. It’s very large and very dark (and still really, really hurts). I struggle with even my husband seeing it and it only adds to the intimacy issues related to my illness.

Above the physical things that impact my lack of confidence, I worry that somehow my worth as a person is not what it once was. Who wants to be friends with someone how spends a great deal of time bed-bound? Where is the fun in that? I constantly worry that other people do not believe that I am truly sick and its all in my head. I’m a minister’s wife and am not able to be nearly as active at church as I’d like to be so I worry what church members think when John shows up to church alone with Abby week after week.

This all of course also impacts my spiritual life. I have a stack on devotionals on my night stand that I really want to read and dig into but I cannot seem to do it. Every evening as I crawl into bed I look at them and feel a pang of emptiness inside. I miss the intimacy I once had in my walk with God. I miss the craving I used to have when I skipped reading.

All in all, I feel like a shell of who I once was. I miss feeling like me. I’ve written post after post on trying to let go of the “old me” and learn to embrace and find a way enjoy this new normal (after all it is the title of my blog) but I’m in a season of struggling. I’m in a stage of grief where I bounce between anger and depression and I hate it. I’m ready to move on.

When I wrote my senior will in high school, I remember my opening sentence was, “I, Jamee, being of strong mind and vivacious body . . .” I want to feel that way again. I want my spunk and sass. Sure, its been 13 years since I wrote those words buts it’s never too late to reclaim it, right?

The thing I love the most about Invisible Illness Week is being able to read the words of others and know that I am not alone. I know the journey I am on is familiar to others who have been diagnosed. I hate knowing that others struggle with pain and illness on a daily basis (and feel the anger and depression of losing a part of themselves) but knowing that I am not alone is such a reassuring feeling. One of the seminars I am looking forward to the most is called “Who Am I Now? After The Diagnosis” and hoping it will help get me started on regaining my footing. I am also hoping working on my Sharing Our Spoons goals will help too!

Have you struggled with your identity after your diagnosis? What have you found the most helpful?

I am writing this week for Invisible Illness Awareness Week! Don’t forget to enter a chance to win Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend by Lisa Copen!