Book Awareness

I'm taking a moment to shamefully and not so shamefully tell you about a book you absolutely must read. Although this book isn't directly related to FAP, it's written by a well known character among the social media ostomy and IBD circles and by association, is relevant to all sickies of the bowel realm.

If you haven't heard already of The Spider and The Wasp, I'll briefly tell you a bit and provide my review to you as well for your own determination.

The author and close friend of mine, Matt, shares his personal story of Ulcerative Colitis and the traumatizing near death experiences he experienced as a teenager and young adult. Many of us FAP'rs can most likely relate to many of his experiences, I definitely can. But he goes beyond the medical backstory and shares how he survived a hellish, hostile work environment with a boss that could quite arguably be described as insane. For example, yelling uncontrollably at him for not answering his phone while using the restroom. Through his medical trauma and PTSD, he details his accounts of coping with a extreme bully boss in a hilarious fashion.

My review:
" Matt Haarington illustrates in a hilarious manner the necessity of survival skills to face the variety of challenges life presents. Challenges at the basic core, we can all relate to regardless of where we are in life or what we’re facing. Just happens Matt’s survival skills are honed over years of trauma and trial and error coping with the aftermath. Like so many survivors, Matt shows us one method of coping is through humor and it is beautifully demonstrated in Spider and the Wasp. No doubt some of his keenly crafted phrases will spread like wildfire and “clown-boning ass-biscuit” will become the next popular catchphrase you’ll hear while walking down the street.

Matt’s handiwork contributes another piece to his readers beyond a good laugh at the expense of another. We feel a sense of comradery, of empathy toward our fellow mankind to rise up against the unjust and fight for the little guy. And with or without intention, he also brings forth further awareness of chronic medical conditions and the stigma and discrimination that many endure. Awareness of the physical and mental ramifications that many of us with chronic medical conditions face through our battles with the diseases, ourselves, and with others. Matt contributes a work of help to the bowel and bladder disease/disorder community and aids to further instill a sense of pride and honor among those struggling.

As a fellow trauma survivor of similar health issues, I’m proud to recommend The Spider and The Wasp to anyone dealing with their own health issues and to anyone looking for a good read and a good laugh."

Accepting Help

Sometimes it's hard to share with others when we're experiencing health issues and when we do, sometimes it's hard to accept help from others. If you're like me, I'm appreciative of the offers to help but I don't think about how others could help me. I'm fiercely independently dependent. I'm reliant upon help from my parents and my spouse yet accepting help from others doesn't come naturally for me and even obvious suggestions don't come to my mind easily. Even now during recent health struggles, friends are offering to help me out. Only, I can't think of what one could do to help me outside of just talking to me. Sometimes you have to hit someone over the head to get them to accept help. Perhaps I would be more open to concrete, specific offers of assistance rather than general offers, haha.

In high school when I had a central line for TPN for six months, I couldn't get my central line wet resulting in the inability to take showers. I had to cover my central line with plastic, I then kept several hand towels over my central line and then kneeled over the tub and washed my hair under the faucet. My parents helped me with this usually, although I could manage by myself. It wasn't until shortly before I had my central line removed that the suggestion of going to a salon and having my hair washed was presented. And with that concrete suggestion, I went with it and it was absolutely heavenly. I was able to relax, have my hair washed thoroughly and without pain of my central line pulling with my arm movements. All for a small fee of $5, it was one of the best $5 I spent. And to think, I could have accepted someone else's help six months before even if it was just occasionally intermingled with my own efforts.

A friend of mine is having back issues and was needing help with transport to a doctor's appointment and childcare during the appointment. Again, it didn't cross my mind that others outside of my parents or spouse could or would be willing to go to appointments with me. I simply scheduled any medical tests with my parents' schedules in mind so that one could go with me. Even as an adult, I still want someone to go with me when I'm undergoing any medical tests or procedures. I just simply don't think someone should have to go alone and frankly, the thought terrifies me. I don't think anyone should have to face medical tests or procedures alone.

Despite how hard it may be for us to accept help from others, especially others outside of our health circles, it can be a wonderful thing. Typically, if someone is offering to help you out it's a genuine act of care and they're concerned about you. And let's face it, sometimes we really do need some help...even if it's just a shoulder to cry on.

National Cancer Survivor Day

Happy National Cancer Day to all you survivors out there! What are you doing today to commemorate your victory? It's hard not to look back and think about the time since fist diagnosis and treatment. It may have only been a short time for you or perhaps, like myself, it seems like a lifetime ago.
 I tend to forget about what I've been through, what I've survived, until reality provides me a sharp reminder. Reminders can be beneficial though. We can be reminded of where we've come from and where we're going, what we need to do to continue surviving and enduring. How we can help others through their battles. What we're made of, the strength and fight that's within us and coursing through us. What motivates us and what ultimately can heal our wounds.
Regardless of how long it's been since sometimes we lose sight of it all. Often times we either can't escape the past or we try to outrun it. Stay in the present, remember the past and where you've come from but don't live there. Be proud of your endurance but still take preventative measures for your continued health, take stock of the emotional and psychological trials you've gone through as well so that you may begin to heal.

And every so often, when you need it most, make sure that you do the following, because you deserve it.

Healthy Digestion

I've been eating very healthy for the last two weeks and what a difference I've unexpectedly noticed in my digestion, not to mention my waistline. I've been avoiding and at minimum reducing intake of starches, sugars, fats and focusing my meals on meat, veggies and fruits.  Boy what a difference that makes!

I'm not feeling bloated, abdominal pains or what's considered to be "constipation" for me. I'm still able to control my SBS with just one Lonox and engage in my activities. I'm feeling fuller with less food but without the pain and blah feeling of overeating and unhealthy eating. I'm feeling so much better than when I was giving in to all those unhealthy cravings. I wake up and feel like playing in the hills, not sitting on the couch holding my stomach because it's uncomfortable or painful to move.

Everyone should talk to their doctor before making diet changes, especially as some of us with GI issues have a difficult time digesting fiberous foods, specifically vegetables. I've been fortunate that vegetables have never been a problem food for me, even when I had an ileostomy. My mother though is plagued with intestinal blockages regularly, even when carefully selecting and chewing her food choices. Even too dry meat causes a problem for her.

Bottom line, it's important to consider our food choices to make better ones for ourselves. Yours may be different than mine, our bodies are similar yet different with FAP. But if you're having some negative symptoms, try some changes out with your doctor and see what happens. I've been too stubborn to make changes before with food and medications but those changes have always proved to be the better choice for me. I hope yours do too.

Lab Battles

Like many others with GI issues, I have to constantly fight my electrolyte levels to keep them balanced. I've touched on the chronic fight and about the severe all out war I had with my electrolytes in the past that have since stabilized with diet and medication alone.

I experience cramping in my hands and feet on a daily basis, usually beginning in late afternoon so I decided I probably needed to read my last lab results. I was shocked by how little I'm able to maintain my electrolytes just in the low normal ranges. I shouldn't be surprised but I was. I knew that my hemoglobin remains below normal to just barely normal but I was surprised by my sodium and potassium levels and the ongoing difficulty I have to keep them in the normal ranges. I hadn't paid any attention as my doctor reviews them as normal and focuses on areas I need to improve, i.e. Hemoglobin.

I don't think I'll ever have a healthy hemoglobin. I take anywhere from 2-5 iron tablets a day just to keep my hemoglobin where it's at. It's hard to tell when my hemoglobin has dropped more or what just feels like normal to me. I try to notice though if I seem to be taking more naps and if so to try to take more iron, just in case. I eat a lot of salt compared to the typical person and it's a good thing because my sodium stays just above normal! I have potassium pills if I need to take them but I rely primarily on diet alone for potassium. Although, perhaps I should start taking them to prevent the daily cramping!

My B12 has been above average and increasing with my daily B12 microlozenge. I discovered to really have to let the microlozenge dissolve under your tongue without swallowing, as directed, versus just chewing it or it really won't absorb as well. I discussed before how I truly require a B12 in the 1000s, far above normal, in order to feel the benefits of a normal B12.
I have a theory on why the microlozenge works better for me than the injections, contrary to what my doctor expected. Because of my SBS and increased difficulty with absorption, I require a steady supply of nutrients in order to maintain whereas four shots a week isn't as steady as daily and there seems to be a short life to B12 anyway.
Fortunately my albumin is also well within normal as I'm able to eat enough protein to keep it safely maintained.

We all have ongoing battles with keeping everything balanced for our overall health. The first key is to be aware of where we are presently so we can know how much further we need to go. Don't assume your labs are alright just because your doctor doesn't point them out as an area of concern. You may need to be altering your diet and supplements on occasion to keep you out of concerning levels. It's just a good idea in general to be aware in order to be proactive and healthy. Let's keep fighting the good fight!