Let me just preface this blog post with; "Crohns is an awful disease." It's not something one really talks about. I mean, talking about your bum and bodily functions is not the most appropriate, lady like or comfortable conversation to have.
I'm well aware that there are other more horrible and debilitating diseases and illnesses. I know that I don't have the "market on pain," nor am I a 'woe-is-me' kind of person. As a matter of fact a Dr. of mine once told Dave (after I had had surgery) "I will never discount someones complaint about pain. But just talking with your wife I really didn't think her problem was as bad as she was saying because of her demeanor. Not only was I wrong, but this problem is WORSE than I imagined. She's just so bubbly and happy."
However, please know that Crohns disease is much more than just 'bouts of diareaha' and flu-like feelings. Although those are a HUGE part of the pain and discomfort, it's not all that there is. It's considered an IBD (Inflammatory Bowel Disease) and the "inflammatory" part is the part that gets ya! It causes inflammation throughout your entire body. During a flare I've had swollen ankles and knees to the point of extreme pain and discomfort (recently had 260cc's of liquid drained from my left knee) and fevers that won't quit! My skin hurts to touch.
I've had sores in my mouth, rashes covering my body, and constant pain and discomfort in my back, hips, shoulders and neck. I've had blood transfusions, hospital stays - because of septic infections, and constant fevers. Crohns causes other inflammatory diseases to surface. Many people who have Crohns also suffer from various types of arthritis (I happen to have Ankylosing Spondylitis - a spinal arthritis) Fibromyalgia Hidradenitis Suppurativa and Fistulization Disease. Anemia is also a HUGE thing for those who have Crohns, because there are a couple of different reasons for blood loss and iron deficiency.
Notice though, that except for the rashes (which could be covered by clothing), ALL of the things I listed above are NOT things that are seen by just looking at a person. (I also attached links to all of the above in case you're wondering about anything in particular)
The gastrointestinal track is THE largest most important part of the human body's immune system. Once it goes wrong, there are all sorts of things that can go wrong. A person with Crohns Disease has a faulty immune system that is confused and therefore attacks itself. There is NO known cause for this phenomenon, and there is NO known cure.
I've been advised of or have tried every single diet, therapy and medication there is. I know what's out there and am doing what I can to get the disease under control. I've lost weight to the point of looking like a skeleton, and gained weight, because of prednisone, that is almost impossible to lose.
ALL of this said, let me tell you a story of my most recent 'episode' and hopefully make you laugh a little, and maybe understand a little more today than you did yesterday about people with 'hidden diseases.'
Psalm 121
1 I lift up my eyes to the mountains—
where does my help come from?
2 My help comes from the Lord,
the Maker of heaven and earth.
1 I lift up my eyes to the mountains—
where does my help come from?
2 My help comes from the Lord,
the Maker of heaven and earth.
where does my help come from?
2 My help comes from the Lord,
the Maker of heaven and earth.
Once Upon A Recent Time....................(on a Tuesday), I was awakened by pain in the middle of the night. I knew what it was, and had had this 'issue' before. I dreaded it, but at the same time, chalked it up to 'one more time.'
I'll admit that it came on quicker and fiercer than normal, but it was OK, I knew what to do. It was my not so welcomed friend Fistula.
The next day I went through the usual routine that I always do, to alleviate this particular problem. Then the next day, I did it again, and the next day and the next.....
After several days of agony, Dave took me to the emergency room in Wheeling not far from our home. After seeing the doctor,(and the Dr. seeing more of me than I ever wanted to share with anyone) they decided to admit me and have me go into surgery the next morning. Everything happened so fast that I forgot that Dave had just started a new job, literally only three days into it, and since we home school the kids, there was no way I had time for a hospital stay.
I checked myself out; received the "You are checking yourself out against medical advice. If you let this go on much longer you will probably get a septic infection and you could die," speech and I cried all the way home.
On Monday, I called the offices of both of my specialists in Canton, and explained what was going on. The GI said I needed to contact the surgeon, and the surgeons office couldn't get me in for another 9 days! They suggested I see someone in the area and get things taken care of ASAP.
My next call was to my family doc, (which is only 45 minutes away instead of the 2hours that my specialists are).
In the meantime, I needed to drive the kids to Steubenville Ohio, thirty minutes away, for a Meet-N-Greet before their OAA testing which was all during this particular week. I had borrowed my neighbors car so Dave could get to work, placed myself into the car 'just so' and drove to Steubenville. I stood for 2 hours while the kids got to know other kids, ate pizza and got to know one of their teachers.....
Before I left, one of the other moms wanted to know if I would like to have coffee the next day while the kids tested (I had never met her before this day) but, you know me.........What am I gonna say? "I'm sorry, but my rear end is in SO much pain I can't even see straight, so could I take a rain check on that?"
Nope, I said a hearty "SURE!" and made plans to have coffee together the next day once we dropped our kids off to test. (I don't even really like coffee....I prefer tea)
I went home, went through my routine of hopefully self-healing, and spent another restless night trying to sleep through the pain.
The next morning, bright eyed (and I cringe at the thought of saying 'bushy-tailed' or 'at the butt crack of dawn' like I would normally call early morning hours) and.........well..........early, I placed myself into my neighbors car again 'just so' and we headed back to Steubenville. Now, let me just say that the Trio had been SO dreading these tests, that I had promised them some fun after testing each day. I located an indoor recreation center in Weirton WV, not far from the testing site, where they could swim for $3.50 per person! This was ALL promised before I started to fall apart mind you.
So, on that next Tuesday, almost a full week since the start of my misery, the kids had their goggles, swimsuits and sharpened pencils ready, and I dropped them off to test and went for coffee with my new friend.
Picture this......my new friend Jamie and I went to the closest McDonalds to get coffee -
Most McDonalds', in my experience, do not have padded seats. This one was no different. So, we sat at a booth and I positioned myself 'just so' and we talked. After a while I needed to change positions, and moved gingerly to another awkward looking seating position. I suffered through this circus act of changing from position to position for about 45minutes until I finally just said "Hey, I know we just met, but how about we REALLY bond REALLY quickly and I just tell you why I'm moving around like an acrobat on this McDonalds booth............."
We laughed over it and, I believed, that we moved on. However, I've not heard from Jamie since that day..................hmmmm
Anyway, I took the kids to lunch and the pool as promised. I stood to eat my lunch at KFC. Fortunately it was one of those tall tables where your feet barely, if at all, touch the ground when you sit at the stools, so standing for lunch wasn't a big issue. THEN we went to the pool.
A nice man that worked at the center heard me telling the boys to stay together and to meet me on the other side and to not talk to anyone while in the men's locker room! So, he offered to show us a family locker room where I wouldn't have to be separated from the boys because "yeah, those locker rooms, you just never know....." (I very was encouraged)
He led us down a long dark hallway to a 'family locker room' where we were all a little creeped out.
Although the hallway we followed him down gave me an eerie feeling akin to following a serial killer to our slaughter, it turned out to be ok, and I paced back and forth while waiting for the kids to change, because sitting and waiting for them was not an option.....besides, someone had to be on the lookout in the dungeon that we ended up in (and someone needed to plug up those holes in the walls and doors with toilet paper just in case someone had a hidden camera on the other side)
Yes, it was THAT spooky.
After the kids got changed, we gathered up all of our belongings (and a pillow for me to try to sit on) and went to the pool. They got in, and I went up a flight of stairs to an observation deck; To really hard metal bar seats.
At first I tried to sit on my pillow and watch them swim, but when that wouldn't work I paced back and forth in the seating area. (there was a lifeguard on duty, so I wasn't too worried about not being closer to the pool)
At one point Trevor called up to me and said, "Mom, we can leave if you need to. It's ok," but I said, "No, I'm alright, I'll give you guys longer." And I paced. Paced and cried. It was actually starting to even scare me a little as I started to lose feeling in my left leg. Since I couldn't sit, and pacing was about to do me in, I finally just gave up all hope of good appearances and gave in to what I desired to do for an hour or more. I knelt at one of the seats facing the wall, leaned over a bench and my dairyair was facing the pool. It might not have been too pleasant for those looking up into the observation deck, but I sure felt better! I had only been in that position for about 5 minutes when I heard Abbey yell up, "Mom! I think we should go!" I was very touched by her concern until I thought about the fact that she's almost 12 and was probably embarrassed by her mom leaning over the bleachers with her rump facing the rest of the world. I yelled back over my shoulder "Yeah, I think you're right!"
During this particular morning and early afternoon comedy act that wasn't so funny at the time, my Dr's office finally called back and said that they had an appointment for me with a general surgeon for the following morning!
"Hallelujah!" I thought!
So the next day, our pastor, and friend offered to keep the kids for me; (by now, it's only Wednesday, and it's been one week since the night I was awakened with this pain.) So I dropped the kids off at the church to hang out with Pastor Joel, got back into my neighbors car 'just so,' and traveled 45 minutes to see this surgeon. Full of hope and promise, I didn't care what he did to me (too much) at that point, I just was looking for some relief. I knew that if the hospital had wanted to keep me and do surgery ASAP several days before, that this surgeon would either A. take care of things right there in his office, or B. admit me and do surgery the next morning.
By this point I had a plan for the kids, because my other neighbor and friend had offered to have Dave bring them to her house before he left for work the next morning, so I knew that if I was kept in the hospital this time, everyone was covered. Just FIX ME!
I got there early, and since he was in the same building right by my family Dr. I said "Hi" to the office staff then stood waiting in the reception area. I waited, and waited and waited. No one ever came out and called my name! During this time, a random lady breezed into the office and started talking to me. She was very blunt, and just came right out and asked me who I was there to see. I explained that although my family Dr. was the same as hers, I was there to see a surgeon. She asked me "who?" I told her, and she said "Good! At least it's not Dr. 'So and So' across the hall! I would never want ANYONE to go to HIM!"
I assured her "Oh No No, I'm seeing this other guy." We talked some more, she finally got to talk to our family Dr. then she wished me luck and breezed right back out the door. I remember thinking that it was such an odd experience.
I looked at the clock and by now it was 40minutes past my appointment time. I finally went to MY doctors office and told them that no one had come out to call me from the surgeon next door yet, and could they check to make sure they hadn't forgotten me!?
They checked into it, and came back saying "Oh no, your appointment wasn't with THIS surgeon, it was with THAT surgeon!"
Yes, the one across the hall that 'Breezy' had just told me to stay away from!!
To make this VERY long story minutely shorter. The surgeon that saw me (and I mean SAW me - by now most of Ohio, a piece of Michigan and a sliver of West Virginia have seen more of me than I ever cared to show ANYONE!) appeared to me as though he were stoned. Yes, I mean High. Strung out. On drugs. I didn't know anything about this guy, except that the 'breezey' lady had told me she was glad I wasn't seeing HIM because she'd never send ANYONE to HIM! But my first impression of him was not good either.
After examining me he scheduled me for surgery the next morning and sent me home. I knew that what he was describing he would be doing to me, and what I had had done in the past, were two different things. I literally got into the car 'just so' and screamed..........several times. Even THAT hurt though. I cried all the way home and after I picked up the kids, I went home and cancelled the surgery.
(I later found out that Dr. Druggie was exactly that. His license had been suspended at one time because he was operating on people while high and drunk. One of those people happens to be the aunt of a friend of mine. When she later heard that it was him that I ALMOST had surgery with, she repeated what Breezy had told me and said, "Don't ever EVER let that man near you. He would have ruined your life." God definitely sent an angel in disguise to me that day to warn me about Dr. Dope)
Once Dave and the kids and I were all home, we quickly packed up, gassed up, and returned my neighbors car to her driveway. Dave called his brand new employer and explained that we needed to get me to a decent hospital, and they said "Go! You'll still have a job come Monday" I got into our car 'just-so' and for a two hour car ride, never relaxed. We got to Aultman Hospital in Canton (where both of my specialists work out of) and went into the ER. I stood for at least an hour in the waiting room and was to the point that I actually thought about throwing myself down on the floor into a tantrum so that they would take me somewhere to lay down. Just when I thought I couldn't stand it anymore, they called my name. By this point, I could barely move. I walked slowly through the ER behind the nurse to, what I'm SURE was the furthest room away possible.
As we were walking through the ER (which is massive) I saw a model looking nurse/dr/orderly....I'm not sure.....but I thought "sheesh, just watch. I'll get HIM." But I thought about it more and decided that I didn't care if George Clooney himself walked through that door; I was going to bare it and share it and scream "FIX ME!"
Fortunately for the sake of the elect, it was neither George nor the good looking nurse that came to my rescue. However, when the Dr. actually came in he took one look and said (and I quote) "Oh honey! Your surgeon is actually in right now. I'm going to admit you into his care and your will be having surgery tomorrow. Anything I would do here would be considered cruel and unusual punishment. You need to be sedated."
I loved this man. Finally! Someone understood!!!
He ordered me some REALLY good pain meds and sent me to a cozy comfy bed (that floated and had unicorns and pink elephants dancing around it) with orders for more pain meds. Did I say that I loved this man?
The next day I had surgery and I slept afterwards better than I had slept in over a week. They took blood. I slept. They took my temperature. I slept. They poked and prodded and I slept through it all extremely soundly. To the point that when 7am the next day rolled around I honestly didn't know if it was PM the day of the surgery or AM of the day after. (it was AM - I asked the nurse)
A little over a week has passed and I've been to follow up appointments with both specialists in Canton. We have a 'plan of action' over the next month and a half, and possibly more surgery in the near future. The surgeon said that I had such a bad, deep infection; he was surprised that I was functioning as well as I was. I told him that this one just came out of left field. That I hadn't even been feeling sick, and BOOM, it just "WAS!"
None of the situation I talked about above was visible to anyone. I may look pale from time to time from exhaustion, pain and anemia, but I can cover that up with makeup. Otherwise, you have no idea what's going on just to talk to me, because I'm not going to say "oh, by the way..............." and even if I did, you still would not understand unless you've experienced the same thing at some point.
I guess I'm telling this story because, I can. And because we all need to be a little more understanding of one another. Just because someone does not look particularly sick, or in pain, doesn't mean they aren't. Just because someone is smiling on the outside, doesn't mean that their insides aren't crying out in anguish. Just because someone is standing, doesn't mean they wouldn't rather be sitting...........Maybe they just can't sit!! What a horrible and embarrassing thing for someone who is a social butterfly!!
It could be for many reasons; physical, emotional, mental that a person is hurting, and you will never know. And they may never want to share it with you. Just be more understanding when your friend cancels plans to hang out, or has to switch things up at the last minute. There is ALWAYS more to the story, especially if it's a friend that suffers from a 'hidden disease.'
Psalm 121
1 I lift up my eyes to the mountains—
where does my help come from?
2 My help comes from the Lord,
the Maker of heaven and earth.
3 He will not let your foot slip—
he who watches over you will not slumber;
4 indeed, he who watches over Israel
will neither slumber nor sleep.
5 The Lord watches over you—
the Lord is your shade at your right hand;
6 the sun will not harm you by day,
nor the moon by night.
7 The Lord will keep you from all harm—
he will watch over your life;
8 the Lord will watch over your coming and going
both now and forevermore.
1 I lift up my eyes to the mountains—
where does my help come from?
2 My help comes from the Lord,
the Maker of heaven and earth.
where does my help come from?
2 My help comes from the Lord,
the Maker of heaven and earth.
3 He will not let your foot slip—
he who watches over you will not slumber;
4 indeed, he who watches over Israel
will neither slumber nor sleep.
he who watches over you will not slumber;
4 indeed, he who watches over Israel
will neither slumber nor sleep.
5 The Lord watches over you—
the Lord is your shade at your right hand;
6 the sun will not harm you by day,
nor the moon by night.
the Lord is your shade at your right hand;
6 the sun will not harm you by day,
nor the moon by night.
7 The Lord will keep you from all harm—
he will watch over your life;
8 the Lord will watch over your coming and going
both now and forevermore.
he will watch over your life;
8 the Lord will watch over your coming and going
both now and forevermore.
Hey! Miss you! Good to see that you are crazy as ever!
ReplyDeleteHEY! I Miss you too!! Did you ever expect anything less than Crazy from me? LOL
ReplyDelete