chronic illness

Another Obstruction: Not Quite The Thanksgiving I’d Hoped For

Another Obstruction: Not Quite The Thanksgiving I Was Hoping For

We had been counting down the days to Thanksgiving. Not just because we were looking forward to the food, time with family, and the shopping (let’s be honest – I love a good deal). We were counting the days because ALL of this was going to be happening at the beach. Yes, the BEACH. With the fight for disability still ongoing at the time and the way my health seemed to tank even lower than we thought possible this past year, we were most definitely vacation-deprived and could not wait to get the heck out of dodge and spend some time away. The fact that this time away was occurring at a place where we could listen to the ocean waves and stick our toes in the sand (albeit cold sand) made it even better.

My parents drove down to our place and then we were all going to drive east together for a week of family and relaxation at their beach condo. I hadn’t been feeling hot but that wasn’t anything new so we worked hard to get everything packed on Sunday night and the plan was to pick Abby up after lunch at school that Monday and to head towards the coast.

Unfortunately, my “normal” kicked up to a higher level of sick that Sunday night. Since I was up sick, John went to sleep with Abby since my parents were in the guest room (that way I can have lights and the TV on as a distraction and he could still get some sleep).  I continued to get worse through the night and my mom ended up getting up to be with me (mother’s love right there – I’m 34 but I still need my mama). It eventually got to a high level that was way too familiar and I knew I was in trouble.

Coffee grounds.

If you have ever had a bowel obstruction, then you will know exactly what I mean.

Instead of heading to the beach at lunchtime on Monday, I was headed to the ER. Thank God He knew where I was headed and He put an amazing team in place when I got there. The nurse landed the IV first try so they were able to get fluids and meds started right away.

My trip to radiology confirmed my fear and what my gut was literally telling me: another small bowel obstruction.

Thankfully, because I knew the signs and know my body, we caught it in the early stages. When they were working on getting me admitted, one of the hospitalists wanted to start a NG tube and even after I shared my previous NG tube nightmare experience, she was adamant that the tube be put in and the fact that I was “scared” shouldn’t be a factor. Fear wasn’t the issue. It was way more than being “scared.” The issue was that there was something anatomically wrong inside me that made inserting a NG tube a problem so I asked to speak with another hospitalist. When I explained the situation to her, she looked at my scans and backed me. She said that forcing the issue and going in blind could cause some major damage so she wanted to hold off to see what the next day’s scans said and if things were getting worse, then she would call in a surgeon.

I felt so strong not only standing up for myself to make sure that I was heard but for also being my own advocate and knowing my body and my medical history well enough to take on a hospitalist that didn’t know my history. I was wearing my “Be A Badass Everyday” awareness bracelet from FJJCreations and I totally felt like I earned my badass status for the day.


Thankfully, since we were able to catch it so quickly, we were able to clear the obstruction and jumpstart the illeus (a section of bowel that becomes paralyzed) with NPO and meds within three days. I had a couple bouts of really low blood sugar that required quick intervention which were not fun at all so I definitely caught a glimpse of what its like for John to live everyday with diabetes and its not fun. The first time I went from 44 to 248 in under 5 minutes and it was the most miserable feeling ever. Thankfully, they were a bit more careful the next time around.

The bad news is that this obstruction occurred up high near the sight of where my gallbladder was removed meaning adhesions have already started working their way up. My previous obstruction have been lower in the abdomen where the small and large bowel connect. This one was located closer to the junction of the stomach and small bowel (basically, exactly where my gallbladder was located). My adhesions are spreading rapidly considering that surgery was less than four months ago which increases the chances of another bowel obstruction occurring due to adhesions.

The good news is that the doctor that took over my care once I was admitted put me on a new medication (called Relistor) that blocks opioid receptors in the gut that would allow me to keep taking the pain medication I need without having such a dramatic impact on the function of my bowels. It means giving myself a shot in the stomach every day from now until who knows when but it keeps my bowels moving which in turn can lower the chance of a bowel obstruction occurring due to an illeus and has allowed me to actually eat a solid meal every once in a while.

The first shot at home was a little scary since they didn’t give me any kind of training in the hospital (thankfully I’m married to a diabetic so he showed me the ropes) but I can now give myself a shot without wanting to hyperventilate. Another badass point for me!

So while we didn’t get to spend Thanksgiving at the beach like we had planned, I am thankful that I got out of the hospital just in time to enjoy Thanksgiving day at home with my family and thanks to the new medication, I was actually able to enjoy Thanksgiving dinner! Hallelujah!

Point of the story: Living with chronic illness means living boldly and sometimes living boldly means advocating and standing up for yourself even against doctors when the time calls for it. You know your body better than anyone. Trust yourself.

[bctt tweet=”Living with chronic illness means living boldly which can mean standing up for yourself even against doctors.”]

And be thankful. Always.

chronic illness

30 Things About My Invisible Illness You May Not Know 2013

I have done this meme before but with the way things can change and often how quickly things can change when living with chronic illness, it is likely that you could fill out these questions every year for Invisible Illness Awareness Week and answer the questions differently every time!

1. The illness I live with is: endometriosis, abdominal adhesions, obstructions, fibromyalgia, peripheral neuropathy, migraines, IC, and Celiac disease

2. I was diagnosed with it in the year: my journey with these illness began on September 17, 2003 when I was initially diagnosed with endometriosis. I was diagnosed with fibromyalgia in 2006, Celiac disease in 2010, obstructions and adhesion issues in 2012, and peripheral neuropathy at the start of the summer.

3. But I had symptoms since: I began having symptoms throughout the year prior but things really came to a head and began impacting my daily life that summer. Thankfully I had (and still have) an amazing doctor who took me seriously, knew her business, and was able to get my diagnosed quickly. Considering a lot of ladies I know struggle for years before getting a diagnosis, I count myself very lucky.

4. The biggest adjustment I’ve had to make is: making the decision with my doctors to pull me out of work and to pursue disability. Huge life change.

5. Most people assume: that since I quit work, I must be “enjoying” my time off. I’m disabled, not on vacation. It is better being able to rest when I need to but its not like I’m spending my days eating bon-bons.

6. The hardest part about mornings are: getting moving! My joints are usually so stiff when I was up so the first little bit that I am up and moving can be quite painful at times.

7. My favorite medical TV show is: Mystery Diagnosis. I think I need to be on there!

8. A gadget I couldn’t live without is: my TENS unit. Wonderful little invention especially now that I’ve discovered a way to use it to help with migraines.

9. The hardest part about nights are: finding a position to get comfortable in and battling night sweats. Those are awful!

10. Each day I take __ pills & vitamins. (No comments, please) 12-15 depending on nausea and migraine issues

11. Regarding alternative treatments I: think as long as your regular doctors are on board and it won’t interfere with current treatments (as I know herbs and things of that sort can have an effect on the effectiveness of certain prescription medications), go for it! I have had some success with physical therapy and seeing a chiropractor. I have also tried herbs and things in the past but didn’t see any results. But if it is safe and you want to try it, give it a whirl.

12. If I had to choose between an invisible illness or visible I would choose: This is a tough one. I’ve gotten to the point now where my invisible illnesses are starting to come more visible when I need mobility aids (such as a wheelchair) to allow me to do extended outings with my family (such as Disney). For example, my last trip to Disney I used a wheelchair (and will likely do so on our upcoming trip) but I did not get a pass that would allow me to skip the lines. I didn’t feel it was necessary. I couldn’t walk the parks but I could stand in line (which is the main reason we go off-season for shorter lines). So when people would see me park my chair and walk to the line, I felt that I was judged for using the chair when they thought that I obviously didn’t need it since I could walk. The cast members as WDW are amazing and extremely helpful and never once did I feel judged or questioned by them. It was the other park guests that I felt gave me the side eye. Does that answer the question? I didn’t mean to write so much!

13. Regarding working and career: In April of this year, my doctor pulled me out of work indefinitely and we began the disability process. I am working on making my blog my career and trying to learn everything I need to learn to grow as a writer, build not only a readership but a true community, and create a network of support and encouragement with other chronic illness warriors and bloggers through projects. I want A New Kind of Normal to become a ministry.

14. People would be surprised to know: I ran track in high school and was the long distance girls team captain my senior year. I kept running all throughout college and most runs were often 5 miles until I started to get sick my senior year. I loved running so much that I have tried my hardest to find a way to incorporate it back into my life but at this stage I just can’t do it and that bothers me.

15. The hardest thing to accept about my new reality has been: Having to give up so many things that I love and always dreamed of. I hated to give up on my dream of being pregnant and carrying a child my husband and I created with love. I hated not being able to pursue a career in hospital chaplaincy that I was passionate about but could not pursue because my body could not tolerate the shifts and long hours on my feet.

16. Something I never thought I could do with my illness that I did was: I never had a clue that my illness would open so many doors and I would be able to meet so many amazing people! I have gained life long friends and I hate knowing that other people are out there struggling and hurting like I am, I am glad that we are able to find a way to connect so we can walk beside each other on this journey with illness and can support and encourage each other along the way.

17. The commercials about my illness: are always so inaccurate that it makes me want to scream. Why are the blood sugar levels always perfect on the test strip commercials? Why not throw a realistic high or low in there? Why is the person with fibromyalgia always out digging in the gardens? High five to those with fibro that still can do that but I know more that are like me that when fibro flares you are lucky to get off the couch! If you are going to run a commercial about an illness, make it REALISTIC.

18. Something I really miss doing since I was diagnosed is: hitting up amusement parks and riding lots of roller coasters! I have always loved roller coasters – the bigger, the faster, the loopier, the better. These days, not so much which is why I think I love WDW even more now since the majority of the rides are more my speed!

19. It was really hard to have to give up: Krispy Kreme Donuts. Darn you Celiac disease!

20. A new hobby I have taken up since my diagnosis is: you are reading it! 🙂

21. If I could have one day of feeling normal again I would: eat a lot and ride a lot of roller coasters (which may not mix well by the end)

22. My illness has taught me: that I am so much stronger than I would have ever given myself credit for and that I serve an amazing and loving Creator who is in this with me and that promise is enough to keep me pushing forward when I don’ t know why lies ahead

23. Want to know a secret? One thing people say that gets under my skin is:  “I know my friend who’s second cousin has an aunt that has what you have (they never get the name right) and they took this organic vitamin drink that will cure you and you will never hurt again as long as you live. You just need to subscribe to this monthly delivery of the magic potion that will cost an arm and a leg but it worth that because it will heal you.” PLEASE DON’T.

24. But I love it when people: ask how they can pray for me or help me around the house with things that might be difficult for me to do or take Abby for a playdate when I have a flare

25. My favorite motto, scripture, quote that gets me through tough times is: Hebrews 6:19 “We have this hope as an anchor for the soul, firm and secure”

26. When someone is diagnosed I’d like to tell them: learn to give yourself grace and time to adjust and find their “new normal”

27. Something that has surprised me about living with an illness is: that even doctors can be ignorant and it is ok to fire the ones you feel do not have your best interest at heart. If something in your gut doesn’t feel right, get a second option. You need to be your own best advocate.

28. The nicest thing someone did for me when I wasn’t feeling well was: send me a handmade hot pack with a lovely heartfelt handwritten note attached.

29. I’m involved with Invisible Illness Week because: it is a cause worth fighting for. The world needs to be made aware of invisible illnesses as well as education and resources.

30. The fact that you read this list makes me feel: not alone in the struggles that I am going through. It is nice to know that there is someone who can read this that can say “I understand” and really mean it.

chronic illnessfaithfamily

May 30th – A Date That Has Redefined My Normal

May 30th has turned out to be a very significant date in my personal journey.

Five years ago, on May 30th, I had a total hysterectomy at the age of 26.

I remember the anxiety of signing paperwork stating that I understood that the  surgery would make me permanently incapable of bearing children and cause me to have to redefine my womanhood. I remember the way my husband held my hand as we walked into the hospital at 5:45am. I remember the way I felt so loved and supported as I had a prayer shawl made by the ladies at church wrapped around me up until the moment surgery began and was placed back around me when I woke up in recovery. I remember the fears that overwhelmed me the moment the nurse said it was time to go. And I remember the look in my husband’s eyes as he held me and kissed me one last time as they took me away.

This surgery was completely life changing. While I don’t think I completely understood just how much it was going to impact me emotionally and spiritually, I had done everything possible in order to feel prepared for what was going to follow. I had done tons of research and had many conversations with my doctors. I joined a forum so that I could talk to others who had completed the surgery or were scheduled. Everything was set up for me to be out of work. I bought cute pajamas and had a bag packed with the necessities for the hospital. We had the house cleaned and set up to help me be more comfortable when I got home. I felt prepared. I like order and structure so it meant a lot to me to plan and feel at least somewhat in control.

One year ago, on May 30th, I felt like I lost all sense of control as I was rocked by emergency surgery.

I remember feeling off when my alarm went off for work. I remember taking Abby to school and praying that I would be able to make it through the day. I remember sitting at my desk knowing that I wouldn’t. I remember crawling into bed two hours later praying that the pain would stop. I remember the moment I realized something was seriously wrong as I laid on my bathroom floor. I remember three amazing women who took shifts staying by my side for the next eight hours in the ER as we waited for answers. I remember the six people it took to start an IV (and praying for large amounts of drugs) and waiting outside the CT room terrified of what they were going to find. I remember a doctor walking into my room in a bow-tie telling me that I was in serious condition and was going to be admitted to the hospital because of a bowel obstruction. Less than 48 hours later he would tell me that I would be in surgery in less than an hour. I remember one of my girls dropping everything to make phone calls and drive to my house to pack me a hospital bag. I remember barely getting through the barium tests and my mom holding my hair back as the severity of my blockage made itself known. I remember the fear I had when I sent John the text letting him know what was about to happen. I remember that being the last thing I remember for the next three days.

The surgery turned my life completely upside down. I had experienced a lot of pain in my life due to endometriosis and my previous surgeries but this was more than words could explain. I was admitted on Friday night at 8pm and surgery on Sunday around 1pm. After sending the text to John, I honestly do not remember anything until Wednesday night. My first memory post-op was of the nurse removing my bandages and seeing my incision for the first time. I instantly began to cry. The seriousness of what I had just experienced became very real. When surgery was performed, a portion of my bowel had already died and gangrene was spreading. Had I not went to the ER when I did, the outcome could have been very different. It was a very scary feeling. My initial hospital stay lasted a week however during recovery I would have two additional partial obstructions (where my bowels were reattached) which would require an additional week hospital stay for each. It was a very difficult time for me and my family. It was a summer of chaos.

Both of these events have a played a big role in shaping who I am. Each required change and a struggle to redefine what normal meant in my life. The hysterectomy was a planned change. We knew it was coming and prepared for it as much as possible. It became the stepping stone  to creating our family through the miracle of adoption which would later bring Abby into our lives. The bowel obstruction surgery completely blind sided us. When John left that Friday with Abby to visit family and officiate a wedding, I would have never imagined that I would have to call him from the hospital. I would never have predicted that the summer would have been so chaotic. I felt like I lost control of every aspect of my life. I was so sick and recovery was so hard. It was hard on me physically, emotionally, and spiritually. It was hard on John, our marriage, and our family. Even recalling how hard the experience was on Abby and recalling the look in her eyes as she looked at me in the hospital bed puts a knot in my stomach. Our normal was thrown out the window, stomped on, and burned and it would take us a lot of time and work to redefine our new normal.

I believe that there are many turning points in people’s lives. Birthdays, graduations, weddings, and births are welcomed celebrations and opportunities for growth. There are other days though and while they may not be as joyous or as welcomed they can still shape you and make you into a better person. May 30th happens to be one of those days.