Category Archives: How I’m Feeling

36 Hours Out. Not for the Faint of Heart.

I’m 36 hours out of surgery #19, and things are not going as I expected. (Do they ever?). I’ve got A LOT more pain than I anticipated. I had a procedure like this once previously, and I don’t recall the discomfort being anywhere near this bad – however, I also had a major abdominal wall rebuild and stoma relocation at the same time, so I spent a month in the hospital on a PCA pump, with a nurse changing all the dressings in the perianal area, so perhaps my memory is a bit skewed 😉

At any rate – YOWSERS! Any time I move, the gauze packed in and covering the wounds rubs and it FEELS LIKE SANDPAPER IS BEING RAKED OVER THE RAW TISSUE. Sorry for that visual – I’m just keepin’ it real. And then there’s peeing. It feels like acid is being poured over my lady bits. I’ve been given a lovely peri bottle to use to “ease the discomfort”. HA! Suffice to say, I have a gained a whole new perspective on the pain that must be experienced by burn victims, and cannot imagine this type of agony over an entire limb, or whole body.

Now, don’t fret – I have good ol’ Percocet to help me with the pain. However, it seems in my old age, that one Percocet does ABSOLUTELY NOTHING, but two Percocets KNOCK ME ON MY ASS. So what’s a girl to do? Walk around with sandpaper on her privates, or lay (sitting is not yet an option) comatose on the couch watching Netflix? I have vacillated between the two today. I think I am higher than a kite right now because I just wrote an entire blog about sandpaper and acid on my perianal area. Don’t do drugs kids – they lead to oversharing.

Sorry to those I’ve just scarred. Crohn’s disease is relentless, and it’s extraintestinal manifestations aren’t for the faint of heart. Deal with it.

I have to.

 

Surgery #19

You read that right. Bright and early Tuesday morning, I will undergo my 19th surgery at the Cleveland Clinic. 

Most of you know that I haven’t really been “healthy” for about the last 2 1/2 years, but I haven’t elaborated publicly about what’s going on specifically. The long and short of it is that my immune system is attacking my skin, both around my stoma and in the perianal area. Not a fun thing to talk about or endure, but nothing about Crohn’s disease or chronic illness is glamorous or sexy. This “attack” comes in the form of painful, deep abscesses that eat away at my skin, leaving painful open wounds and fistulas. I have been on Humira for 7 months to try and combat the aggressive nature of this immune war, and it has helped. The abscesses have lessened in frequency and severity. But they’re still occuring, and I’ve been left with some areas that just won’t heal. So on Tuesday, my colorectal  surgeon is going to excise those areas, believing that removing that diseased tissue will make way for healthy tissue to granulate together and close over.

I wish I could say that, after 18 surgeries, this’ll be an easy one. But the truth is, none of them are easy, and NO, you don’t get used to having surgery, even if you’ve averaged one every other year of your 40 years of life. If anything, the older I get, the harder it gets. Physically, I just don’t recover like I used to. Anesthesia is a real bitch. It wipes me out – not just for hours, but weeks. The “fog” is hard to shake. And my almost 40 year old body doesn’t heal at the rate at which it once did. It’s been through the ringer, and it tells me “Listen- we have done this 18 times. We’re gettin’ real tired of bouncing back. I know you have this, this, and this planned, but um, too bad. You’re going to have to chill while we get our act together.” So, I’ll chill. I won’t like it. But I’ll chill, and hope my body will get it’s crap together quickly, because those of us who’ve done this before know that the hardest part of recovery is the mental battle.

Healing ravaged tissue will be the easy part (hopefully). Antibiotics, packing/dressing, and lots of protein. I know the drill. Well. But the mental aspect of healing and recovery is daunting. Even after all of these years. A positive attitude is hard to hold on to when life repeatedly knocks you down. I once described the phenomenon as “losing my mojo”. I’m a decently optimistic person, I’m more self-aware than most, and I’m generally confident in my abilities, but every time I have a health setback, all of that goes out the window. For whatever reason, I no longer feel capable. I second guess. I need reassurance. I feel needy. I forget I’m a gutless Wonder Woman and instead, feel more like a gutless wonder. 

Recovery from my last surgery took 4 months. It was a good 5 months after that before like myself again. I CANNOT deal with that again. I. JUST. CAN’T. There are too many exciting things on my horizon, and I won’t be ready to tackle them head on if I’m not 100%.  Would you pray with me, and for me, for a successful surgery, quick and easy recovery, and the support and encouragement I need to battle the days ahead? Thanks friends.

 

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My (not so) Perfect Body

I’ve seen a lot of articles and stories about body positivity lately, and it’s had me thinking about my journey to self-love, and learning to be appreciative of my body, instead of constantly cursing myself for what it doesn’t do and has never looked like.

Swimsuit season is upon us, and for many who are overweight, underweight, normal weight, and live with any type of disease or illness that can affect appearance, this can be a high anxiety time. I know I’ve sat on the beach or at the pool, dreading having to get up and walk to the water, anticipating glances from judgemental bystanders because my body doesn’t look like what they’d prefer to see.

This year though, I’m resolving to walk talk, be proud, and love myself, because…

They don’t see the 9 year old girl diagnosed with Crohn’ s disease, who spent 3 months in the hospital, and had nary an ice cube pass through her lips for 86 straight days.

They  don’t see a 10 year old body bloated from prednisone, or hear her “friends” calling her Cabbage Patch Kid.

They don’t see the 15 year old whose colon is ripped from her body, and the stomach that is fashioned with an ostomy pouch to save her life.

They don’t see that teenager standing in front of the mirror, disgusted by what she sees, asking questions no teen should have to ask – “Will I live through highschool?” “Will I get to go to college?” “Will a boy ever think I’m pretty, let alone date me?” “Will I ever be able to have sex?” “Can I have a baby, be a mom, hold a career?”

They don’t see the 5’9, 98 lb body that graduated highschool ravaged by pouchitis, Crohn’s disease and anorexia. How every single rib was visible in that chest, and how the knees were wider than the thighs – They don’t see that, do they?

They don’t see that young woman at college, so desperate to fit in and be normal. They don’t see her self-destructing with alcohol, or crying herself to sleep at night after a person she trusted violated her body in the worst kind of way.

They don’t watch as this 19 year old is wheeled off to an emergency surgery that makes an ostomy a permanent fixture in her life. They don’t see the emotional breakdown, or the physical fight to regain “normal”.

They don’t you see the countless stoma revisions, hernia repairs, packing of wounds, infections and bowel obstructions this body has endured.

But they also don’t see as this 24 year old woman walks down the aisle on her wedding day, tall and proud and feeling beautiful.

And they don’t see this body as it grows and nurtures another human life for 9 months, even after doctors said that would never be possible. They don’t know the trauma that pregnancy put this body through, and the multiple surgeries it’s taken since then to try and repair the irreversible effects.

They don’t see that this body nourished that baby for 6 months from its breast, and they don’t see the 12 years that this body has been fighting to stay well enough to continue to care for this child.

They don’t see the multiple blood clots in both lungs that almost killed this body at age 37. They don’t see the results of a pulmonary infarction that means that this body now functions with only 80% function in its left lung.

They don’t see the most recent (and hopefully last) surgery this body has conquered – how doctors used mesh to rebuild an abdominal wall that had been disintegrated by the 16 previous surgeries. They don’t see the massive infection that destroys this body for a month after that surgery, or the weeks upon weeks of IV antibiotics and recovery, only to result in another surgery and open wound.

They don’t see the Crohns disease that, having destroyed the intestines, is now plaguing the skin on this body. They don’t feel the pain , see the embarrassment, or understand the grief.

You, passers of judgement, have never seen this body hold the hand of someone who is hurting, hug a friend, or walk alongside someone who is struggling to find their own way to self-love.

You don’t see this body, that is 5 months from turning 40, and understand that it’s seen and experienced more that most bodies twice its age.

This body isn’t perfect. Its arms are a bit flabby. It carries extra pounds and is soft and snuggly. The thighs touch, and yes, they jiggle.  It has a booty, and it has a belly, because artificial abs just don’t “hold it all in” like they should. It’s covered in imperfections – cellulite, stretch marks and lots of scars.

So, no, in your eyes, this body is far from perfect. But I LOVE this body, and I’ll not let a sideways glance from you cause me to curse it with ONE. SINGLE. NEGATIVE. THOUGHT.

This body has fought, struggled, warred, and is still standing.

It’s not perfect.

Nope.

IT’S MIRACULOUS.

2013 – The Year of Me(h)

Admittedly, if you look at my Facebook page, and go by the status updates alone, you can deduce that 2013 was a year focused on me and meh. I’m not generally so self-consumed, and I even sounded a bit whiny in many of my posts, but 2013 was a tough year. I’m chalking it up to experience gained and character built, sprinkled with some good friends, many laughs, and the faithfulness of God to carry me through any circumstances. In case you missed it, here’s the year in review…

January –  Rang in the New Year after narrowly surviving the Knipp Christmas Plague of 2012. Eleven days later, I found myself in the ER, hearing the words “You have multiple, bilateral clots”. That’s right, blood clots. In my lungs. Both of them. And once again, I narrowly survived. After a stay in intensive care, and some additional time in the hospital, I was discharged home to a new world of blood thinners, bi weekly visits to the anti-coagulation clinic, and chronic shortness of breath and chest pain.

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February – My baby girl celebrated her 10th birthday, and we packed up our house and moved in with my inlaws. Instead of feeling better, my health continued to deteriorate, despite almost weekly trips to the doctor, and several courses of treatment.

March– The month began with the loss of a friend, colleague and mentor, Linda Aukett. Then back in the hospital, this time with fluid in my chest. The clots had cause significant damage to the lower lobe of my left lung and I’d developed a pulmonary infarct and pleural effusion. After having it drained, and a round of blood transfusions, I was feeling much better, and began to make some progress forward. This month also marked 13 years of marriage for Jon and I.

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April – Another stint in the hospital, and the loss of a bright and shining light in my life. Zachariah was my friend, ostomy brother, fellow advocate and Youth Rally counselor. Rest in Peace, Z. Much love!

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May – . My lungs began to work better, but my gut began to behave less. Enjoyed our traditional Mother’s Day outing to the flea market and Geneva on the Lake. Unfortunately, a bad intestinal blockage confirmed what I’d know for about two years – I had ANOTHER hernia, and was going to need major surgery to repair it, including an ostomy re-site and revision and an abdominal wall rebuild.

June – An uneventful month, with the exception of some minor ostomy issues. I took Jaidin and her friends to the opening of the American Girl Store in Columbus, and reaffirmed my thoughts of being crazy while standing in line in the blistering heat for 3 hours.

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July – BEST MONTH of the YEAR. Why, you say? YOUTH RALLY! A week in Seattle with my Rally family was just what I needed! Love you guys!

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August – Began mentally preparing myself for my 16th surgery in September, and lost the job that I loved.

September – Major surgery on Sept. 3rd, and I don’t remember much after that. Excruciating pain for days, unresolved ileus, infection, fluid collections, drains, it’s all a blur. I finally was discharged on Sept 24th, to a month long home IV antibiotic regiment.

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October – Spent the month nauseated, running back & forth to the surgeon’s office. Developed a blood clot in my arm from the PICC line, drain in my belly came out, and was promptly put back in a week later after a Ct scan found another seroma. A couple days in the hospital, then out for more home care antibiotics, and Halloween.

November – I celebrated 38 years of life on this earth, and was especially grateful for modern medicine that made that milestone possible . Finally felt decent enough to begin job hunting.

December –  Flew to Atlanta for a job interview, and was in the hospital a week later for another surgery.

So, tonight, with an open wound and some optimism, I will jump head first into 2014, thanking God for His faithfulness to see me through the last 12 months and believing with all my heart that things are on the upswing. Thanks to all who have endured 2013 with me, brought smiles to tough times, words of encouragement in the midst of despair, and lots of laughs through the tears.

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Two sides of the Phil Robertson coin

I really wish I had more cohesive thoughts to share with you on this “scandal” (and I use that term loosely – the man’s thoughts on homosexuality are no big shock to me, and I don’t even watch the show.)

You take a devout Christian man, whose TV empire has been built mainly on the fact that he’s a devout Christian (or at least plays one on TV) (I’m going to get flack for saying that, I know!), and you ask him his views on homosexuality, it’s not bewildering that he answers in the negative. His answer was in my opinion crude, and as a Christian myself, NOT vernacular I’d have used, but the man has a right to his opinion, and the right to express it how he sees fit. Our Constitution guarantees him that. It does not, however, protect him from the consequences of expressing said opinion.

If you go on to read the full article, then you know that Phil says some other things that could be considered inflammatory. He eludes to the fact that homosexuality leads to bestiality. Now, I have lots of LGBT friends, and to the best of my knowledge, none of them has ever had sex with an animal. (I do, however, have straight friends that leave me wondering. Anyway…) He also talks about growing up in the Jim Crow era, stating that he never saw a black person mistreated, and he never heard a black person complain about white people. Is he then drawing the conclusion that racism is/was a myth, and that black people were “happy” with segregation?   I don’t know. I hope  not.

Do I think Phil is getting a lot of crap just because he’s a conservative Christian? Yep. Absolutely because I’ve experienced it myself. Seems tolerance is afforded to everyone these days except those that trust in Jesus. And I honestly believe, that when most Christians share their beliefs, on homosexuality, abortion, or other controversial subjects, like me, they’re not judging or condemning. I do my best to afford grace to whomever I meet, whether you agree with me or not. And even Phil goes on to say that he never wants to judge anothers intentions or heart when it comes to God. And I believe him.

But there’s another part of me that knows, despite what the media might say, that Phil is a savvy guy. He may have been born and raised in backwoods Louisiana, but you most certainly do not build a TV empire such as Duck Dynasty without being aware of the current atmosphere in America surrounding homosexuality, the church, racism and the like. So to claim ignorance because you are a product of the 60’s is foolish. BUT – in his defense, A&E was also not ignorant in hiring Phil  and his family, knowing full well his beliefs beforehand. So…

I guess what I’m saying is, while I understand both sides of the coin, I have a hard time committing to either one. So I wont be boycotting, signing any petitions, or joining any Facebook pages, groups or movements. But I will be happy to discuss this “scandal” with anyone who wants to have an open and real dialogue that includes all sides of the coin.