For those following along from the beginning of my illness, or beginning of the time I made my health struggles public, or the beginning of the time I started my book, of all of it, I am OK! There is the last page of the book, so you know it turns out well in the end. I survived! Rather, I am surviving!
Today, I am starting with a clean slate. I tried to write “My Book” about two years ago when I ran into major roadblocks. I may have thought I was healed at the time, but I wasn’t and I am probably still a work in progress. In fact, I hope that I will always be a work in progress. Around the time I got serious about writing my story, I started to experience anxiety and depression with irrational swings of tears and emotions. It got to the point that my husband so sweetly suggested to his once level-headed wife, “Do you think you should go talk to someone?” That was two and a half years ago. I did seek a professional who counseled me through a whirlwind of emotions. At that point, the source of the emotions was my writing and reliving my final health crisis, so I stepped away not knowing if I would be able to return. I had to take care of me before I could write a book. Ironically, right about the time I was trying to get my head on straight, the world shut down and we entered the crazy world of a pandemic. Lockdowns and chaos further challenged my sanity, but, as always, my friends and family, my faith and keeping a sense of humor carried me through.
Lately, I have had an overwhelming feeling of “unfinished business.” I have to tell my story. I want to tell my story. I NEED to. I want to help anyone I can, any way I can, be it health struggles, stress, life struggles, marriage, kids. Once I decided to share my health story, people started sharing theirs with me…a true honor, actually. But what I learned is that we are ALL in the trenches together. Nobody has a Facebook perfect life. In fact, I would say the people that try the hardest to display perfection, might be the ones that are hurting the most. Everyone. Has. Something. As for me, there is no way I could have survived the past 30 years without the love and support of friends and family, my faith and, my word, the ability to laugh when you are down. Laugh HARD. I am incredibly imperfect and just wait because I will tell you ALL about it. Life. Is. Hard.
My Illness
I have Crohn’s Disease. Not just Crohn’s Disease, but as the years accumulated, it became abundantly clear that I have an unusual form of Crohn’s Disease because it affected not my colon, but my stomach. The reason this was a big deal when I was getting so sick in the mid 90’s was because all medicine created for Crohn’s Disease was created to release in the colon, thus bypassing my stomach and providing no relief. This left me with many medications that I tried and all medications that I tried ultimately failed. Medications improved in efficacy as I got older, but none were created to heal the body. They were created to manage symptoms of the disease. In fact, that alone was an eye-opener for me. I was trained in the medical model, which is “Find the symptom and treat it.” Not to find the root cause and remove it.
When I was a Junior in high school I remember asking my parents for the first time for something to take because my stomach burned. Antacid to the rescue and I was good. Before I finished high school I had my first yeast infection and I gained a significant amount of weight for no apparent reason. I was a tennis player who played 5-7 days a week most of my life. With that amount of physical activity there was no reason for my weight to change so drastically. If only I knew then, what I know now. That will come in time here, but ultimately, the end of high school marks the beginning of my life long fight, and I mean FIGHT, with inflammatory bowel disease, aka Crohn’s Disease in my instance.
When I was finally officially diagnosed with Crohn’s Disease roughly eight years later, I had never heard the word “Crohn’s” before. I remember very clearly talking to one of my favorite nurses at the hospital where I worked and she told me, “Penny, I think you have Crohn’s Disease.” I also remember telling her, “That’s an ugly word. I don’t want that disease.” #vanity Within a few months I was having emergency surgery because my stomach had swollen completely shut. And during that surgery I received my official “Crohn’s Disease” stamp.
Who I Am
I am a 47 year old wife and mother to three amazing boys between 12 and 17 years old and 2 very spoiled dogs. I have one older sister and was raised in a wonderful loving home with zero family history of Crohn’s Disease. I have a strong faith and a solid Christian upbringing. I like to say I came from a long line of love {like the song ;)} via my grandparents and great grandparents all with 50+ years of marriage. {phew!}
I am also a registered and licensed Occupational Therapist. I have practiced in many settings with every age and diagnoses you can imagine. I worked in the Neonatal ICU with preemies, on the Trauma Team with traumatic brain injured young adults and adults after accidents, spinal cord injuries, orthopedics, stroke, cardiac care. I worked in Acute Care, In-Patient Rehab, Skilled Nursing facilities. I love my job and my patients. I am so fortunate to have a job that is so flexible and has allowed me to opportunity to change settings and populations when I have moved and entered different phases of life. I consider it a complete joy to share my challenges with my patients in order to encourage them or help them thru their most difficult times as well.
I am also a past pharmaceutical rep. Ironically, I peddled GI drugs to Internal Medicine and GI doctors, including my own at the time. I love the medical field. I love to research and understand how the body works. I have experienced and endured so much between caring for my patients, educating physicians regarding my drugs and living with Crohn’s Disease for 30 years. I have opinions, angles, suggestions, life experience, and I am a really good listener.
The Book
I think the idea of a book might be forthcoming in the future, but until then, I choose to blog in spurts. There is nothing worse than a super long blog post that rambles on with no purpose. I think in bullets, so my aim here is to tell my story, one experience at a time. I kept a blog in the past mostly to document my personal health for my own purposes. That evolved into a health blog for others and, of course, “The Book”. So, if appropriate, I plan to cut and paste some posts from each of those here when they are relative. So, let’s do this!