Friday, March 27, 2015

B is for Brave

 I don't feel brave.

Not at all.

People are always telling me how brave I am in dealing with all this IBD/Crohn's crap.

It's not that I'm brave, I just don't have a choice.

I am alive and until God decides differently I will push through this misery to be the best I can, to make the most of each day.

By definition, I guess you could use the term brave loosely. I know I face pain and "unpleasant conditions" everyday and this is most likely the outlook for every single day in the near future but I don't feel brave when I get up in the morning.

I feel tired. I feel heavy. I feel determined but not brave. Determined to make it through today. Determined to keep my mind in check. Determined to move forward but not brave.

Mostly I feel afraid. Afraid I won't be able to control the pain. Afraid the meds won't work to control the disease. I feel afraid because there is no cure for Crohn's and so I won't look too far ahead for fear that the future may not be very pretty. This does not fit the definition of brave.

I have a little ritual every morning so that I can face the day: 1 hydrocodone and 1 bentyl to lessen the pain and discomfort of my bowels. Then I fill up my Essential Oils diffuser with a good smelling variety of oils and let it fill the air around me as I drink coffee and wake up. This is often time spent reflecting on the spiritual side of life. I pray a lot, read inspiring things and bible scripture, and of course, Facebook ;).

You might be asking with the roll of you're eyes, Facebook? Really Monnie, Facebook?

Yes, really. Facebook. You can add Twitter, Instagram, and Google+ to that as well. There are even a couple of IBD specific social media sites that I am an active member in too.

I follow several people, groups, organizations, etc... that are all things IBD/Crohn's related. I read their triumphs, discoveries, medical breakthroughs and daily progresses. I also read of their struggles, set backs, failures and frustrations. I watch as they pick themselves up and begin again, as they push through road blocks and follow detours on the way to success. I've even met a few of the people behind the profiles and developed friendships with them. I've bonded cyberly (my own word, thank you) with others through messages and good old fashioned postal mail. With out social media, my fight with this disease would be very, very different and extremely, horribly, frighteningly lonely.

These people who put themselves out there everyday, who publish the highs and the lows of their daily battle, these people are the true definition of brave to me. They fight every single day to hold on to their family, friends and even their jobs because IBD threatens to take it all away. Let's not forget the ones who get up everyday and commute to a job to declare war on the never-ending battle of autoimmune diseases. They may not see any breakthroughs in their career lifetimes but they still strive for new solutions. They are most definitely brave. Add to this, the doctors, nurses and other medical professionals who serve and care and move mountains for their patients. They are warriors too.

I am in awe and inspired. I feel like I'm not alone in this crazy messed up world of bowel disease, I am surrounded by a family of fellow gutsy (pun intended) ninjas. We are all doing the best we can with what life has handed us and because of their bravery, I can find the strength to be brave too.

Wednesday, March 25, 2015

A is for Acceptance

My cousin emailed me a couple of weeks ago challenging me to participate in April's A to Z Blog Challenge. I like it but I'm not always regular with my blogging. I blog for fun and stress relief so putting a deadline or strict timeline parameters on me takes the fun and most importantly, the therapeutic release away from it. I will lose interest super fast and begin to stress over it which totally defeats the purpose of why I blog.  I decided to follow the guidelines on my own time instead and even though it's March 25th,  I'm doing my 1st post in my own A-Z Challenge.

A is for Acceptance

January 29, 2015: official Crohn's disease diagnosis.

Week 8 as a Crohnie: Anger slowly being replaced with acceptance.

I know I really don't have a choice in the matter of accepting the fact that I have Crohn's and staying angry will be very destructive in the long run. Yes, it's natural to be upset, it's part of the grieving process after all. The process is meant to be healthy, to help deal with emotions that left unattended fester and become cancerous growths in the mind. When it's time, the mind, body and soul can move forward to find a healthier and hopefully, happier balance.

I am making a choice to move forward, to stop being mad, to focus on the positive. It's necessary or I will find myself in a black hole of unhealthy mind traps.

We just came home from spring break in Arizona. We spent a few days laying in the sun and wandering around Phoenix which was wonderful and much needed. We decided to explore Sedona for a couple of days before heading home and wow! What an amazing place! I wish I could just move there for a few months and take the time to fully heal and restore my body and mind in the beautiful handiwork of God the Creator.

I could just sit and soak up the sun for days.
Or stare at the gorgeous canyon walls. Or walk among the native plants smelling the rich soil...

These photos do not do the beauty of the area justice.  The colors and even the smell cannot be captured by man.

When you are here you feel much closer to nature. The peace and quiet of the land envelopes you and allows you to escape the daily toll of real life. You feel your shoulders relax and the tension of your neck subside. It is truly a place of healing.

As we wound through the canyons on our way home, I felt my rage against Crohn's begin to subside. We are not meant to hold on to such powerful emotions for long for they can turn against us and create negative habits. Anger demands to be dealt with. It must be acknowledged, to sweep it under the rug or deny it's existence or even to fuel it can bring about devastating consequences.

Today. Right now, I'm choosing to let go of the anger and disappointment of the Crohn's diagnosis. I will not allow it to control me any longer.

I just took my Humira injection and am now icing the sore spot on my leg. I'm not sure if I will ever get used to the burn of the medicine entering my body. Oh well, it's a small price to pay in order to be healthy. This was my 4th injection and I pray I start seeing significant improvement. Things are moving so dang slow! I know I'm getting better but I'm very frustrated with the time scale here. By this time after my ileostomy/rectum surgeries I was running. It was a slow run with lots of walking but I was exercising at least. This is not the case now. I couldn't run if my life depended on it. I'm barely able to walk at a normal pace to get the mail at the end of the block and back again with out feeling like someone punched me in the gut. Doc says it will get better, I was in really bad shape and I'm dealing with active disease. He says I'm too hard on myself. Maybe so, I don't know, I just want to be normal again.

See that? That last sentence in the above paragraph? That's what I'm talking about, that's the dangerous place my mind has a habit of going to. My new normal is a life dealing with Crohn's, I cannot allow myself to wish it wasn't so. I must accept this fact in order to move forward, to find a new normal with hope and excitement for the future.

I love this quote from Maya Angelou. What an amazing person! This is my new mantra, I must thrive or the darkness will overcome me. Every day I get up and decide that today, this day, I must be thankful that my feet are on the ground. I must let go of the disappointment and push through the unknown of living with chronic illness and pain. I must put my focus on things that are praiseworthy (Philippians 4:8).

I told my hubby the other day that I couldn't dwell on the what if's like, what if the Humira doesn't work? What if I am always in pain? What if I have another flare? What if ...
It's too dangerous for me to go there. I will live in constant fear if I do.

If I am going to move ahead, I must have a positive mindset. This, I've discovered, is much easier said than done. I can often feel the negative creeping in trying to steal my joy. Not going to happen anymore! No sir, I'm wearing the big A for acceptance now so back it on up!

I'm going to own this disease.

It will rue the day it came to live in my intestines!

That is all.

Friday, March 13, 2015

My Frienemy Prednisone.

Hello Prednisone. I wish I could say I was happy to see you again. I really thought you were gone from my life for good.

December 18, 2014 is the date of my twisted bowel surgery. January 30, 2015 is the release date of my last (of 4) hospital stays. March 10, 2015 is the date I went to see my GI because I needed a 3rd refill of Hydrocodone 10-325. I am still having a lot of pain and I guess not all of it is surgery related, it's Crohn's related. I am averaging 2-4 pills a day plus 1-3 doses of Bentyl, an antispasmodic for the digestive system.  I was taking Entocort, a steroid designed specifically for the gut that doesn't have the typical steroid side effects like moon face, roid rage and weight gain but it just wasn't up to the task of my stubborn gut I guess. Doc decided I need a low dosage of Prednisone for a month or so and prescribed 10mg daily. As he examined me, he listed all the benefits of prednisone for a few weeks: quicker healing, pain management, getting inflammation under control, weight gain... Yes, he said weight gain. I've actually put on 10 pounds since I've been home from the hospital over the last 6 weeks. I guess I still look a little anorexic though.

I hate prednisone. It's a dirty word as far as I'm concerned. I had to fight back tears when he started talking about it.

I was already on the verge of a breakdown because as I've been getting things ready for our upcoming spring break trip I realized I did not have enough hydrocodone to last the trip. I take these very sparingly in order to make them last. Now that you need a paper script and an act of God to get them, I treat them like precious jewels. I was nervous about asking for a refill and so I decided to do it in person instead of over the phone. I'm so very glad I did. He is an awesome doc and very encouraging and understanding of what I am dealing with. He actually play scolded me a bit for being so worried about asking a refill. These were his words:
                           "Monnie, I know you. You are neither a complainer nor an addict. You have a horribly painful disease and you need pain management. I would not blink an eye if you needed hydrocodone every day from here on out. I have patients that take 1 dose every morning and/or every night just to help control the pain and/or ostomy output. It's already been established that your gut runs fast and with all that you've been through over the last 5 months it's no wonder you are still having pain issues so please do not hesitate to call and request refills. Your pain is legitimate." 
I felt my shoulders relax immediately and an audible sigh of relief from my heart filled the room. I have had doctors and/or nurses treat me like I am some crack whore trying to score my next hit and it's so humiliating. I would rather not take narcotics if possible but it's just not realistic for me right now. There are no words that I can use to adequately describe the relief this conversation gave me. It also gave me hope. Hope that I can function with less pain because my doc understands what I need and is willing to help me.

My healing process seems slow to me but I've been through hell for over 6 months so it's unlikely and unrealistic that I would just bounce back to 100% in a couple of months. This is the hardest part of recovery. Every day I push myself to the limit of my pain. I plan ahead of time what I will do so I can take the pain meds at the right time to help get through the tasks. It's like learning to read again and having to sound out each new big word in order to complete the sentence. I'm so over it.

Maybe the prednisone will speed things up a bit. 10mg isn't a big dose at all, I used to take 40-60 mg back in the day of UC. I'm on day 3 and really, the only side effects I've noticed so far are trouble sleeping and a little nervous energy. What are the chances this will be the worst of it? Probably not, the more it builds in my system I'll probably experience more side effects. Oh well, it beats feeling bad all the time.

My dear, dear frienemy, Prednisone, we are in this together whether I like it or not so let's make the best of it. I will take you faithfully if you will speed up my healing process. I will deal with your side effects if you bring down the inflammation of my intestines. I will take advantage of the extra energy you provide if you will go easy on the weight gain. I'm barely hanging on to my vanity as it is so please, can you take it easy on the moon face if at all possible? We can do this for a month and then we will part ways and I will deal with your younger brother of 5mg until I can send him packing too. I'm committed to this relationship so let's make it work and hopefully we will never have to meet again. At least not until the next flare anyway...

Sunday, February 22, 2015

Bad Attitude

I'm still mad.

Crohn's still sucks.

I'm still in pain.

My attitude rivals that of a newly awakened hibernating bear. All teeth and claws.

Is it bad that all I want to do is curl up with my Bubba dog and pretend the world doesn't exist?

That's where I'm at right now.

The stupid weather can't make up it's mind. One day it's a gorgeous 73 degrees and the next it's arctic living at it's worst. I wore flip flops yesterday and today, Uggs because there is snow blowing sideways. I've stopped watching the weather because it does nothing but piss me off. If I follow the forecasts then I start to anticipate the pain I will be in which makes me feel like a total hypochondriac. My body is enough of a radar on it's own. I can feel a change coming as early as 2 days before it arrives. Every joint in me is screaming, "MOVE TO A TROPICAL CLIMATE!"

I was telling some friends yesterday just how badly my attitude stinks. I want to get past this but I just can't seem to which made me think: Do I really want to move forward or am I enjoying being in this dark place? Am I hanging on to the anger because it's easier than dealing with the fact that I have Crohn's?


You know what I want? I want to have that feeling that I experienced when I stopped breathing in 2011. The complete and total sensation of weightless peace.

I'm not suicidal, don't call the white coat guys yet.

I made a deal with God. (Well, it's what I tell myself anyway.) I feel like I have a choice when I'm in the hospital of whether or not I want to fight to survive. This last go round, I didn't want to fight so I told God that. I told Him, I'm not going to over extend myself this time, if I'm going home it's because You want me to otherwise I'm coming to see You in heaven. I'm done and I'm tired of this stupid battle but if You make me better and I end up going home then I will honor that. I will do what I need to do to take care of myself because it's obviously Your plan that I live with this stupid chronic illness.

So here I am. Home. Living with the stupid Crohn's.

I'm tired of being told how brave and strong I am. I don't feel brave and I certainly don't feel strong.

I feel like I don't have a choice.

I'm not trying to inspire others. I don't want to be the poster child for living with this crap. I want to be normal. I want energy to do things, anything, and not require pain meds or a nap. I don't want to measure out my energy. I don't want to weigh tasks like going to the grocery store versus having lunch with a friend. I want to do both! In the same day!

My friend asked me on a scale of 1-10, (10 being I could go out and run a half marathon) where I'm at. Ha, being optimistic, I told her I was a 3. Really, I'm a 3 on a scale of 1 to 100. I am barely functioning and that's the truth. I might look good when I clean up, fix my hair and make-up but physically I am only operating on the 4-6 hours of each pain pill.

This is the great deception of invisible illness. My body hates me on the inside and that rarely translates to the outside world.

I can put on a good show when I'm out and about. And I can tell you I'm fine when asked how I am. I've mastered this art. If I answered truthfully, no one would want to be around me. I'd be so depressing. Imagine if I answered like this: "You know that achy feeling you get just before the flu sets in? That's how I feel every damn day. That's how I feel right now even though I am out eating, shopping, whatever... I feel like crap. Bad crap, not just sorta crappy but full on crap. I am aware of every joint and muscle in my body because it's on fire. My head feels like it weighs a thousand pounds. I can see my energy draining like the little whirlpool of water as it leaves the bathtub. My legs are shaky and there has to be a vice grip somewhere in my guts that is rusted and clamped so tight it will take an act of God to remove it. So that's what's up with me, how are things with you?"

I want to scream "SERENITY NOW!" And I want it to help me feel better. It doesn't but I do it anyway.

This week is dose #2 of the loading Humira injections. I'd be lying if I told you I am hopeful and feeling positive about it. I feel zero anything about it. My expectations are so low that if it gives me the slightest, microscopic change I will be impressed. Like I said, my attitude is really bad. Really. Really. Bad.

I might need to start my antidepressant again, ya think?

Friday, February 13, 2015

Immunity of a Popsicle

With autoimmune diseases the immune system is crap. Crohn's is an autoimmune disease therefore my immune system is worthless. I try to take every precaution possible to keep from getting sick. I'm the girl wearing the mask in the doctor's office, not because I'm coughing or sick but because everyone else is! My body does not fight off yucky germs very well. It fights it's self like a pro but bad germs are welcomed with open arms.

The day before my big Humira starter dose, my son came home from school with a nasty throat and ear infection. Being a mother, I couldn't keep from feeling his forehead, touching dishes that he used and just being around him. He was coughing and sneezing and I could see all those little infection cooties floating through the air and then charging me when I came into their view. Sure enough, by the end of the day my throat was scratchy and I was coughing and sneezing. My eyes were itchy and I could feel the snot accumulating. I was on the verge of a full on meltdown from fear of getting sick!

THIS IS A BIG DEAL. If I come down with something, anything, I can't take the Humira injection. Nothing was going to stop me from getting my new meds so I could start getting back to life. 

I am an Essential Oils believer. I've said this before and the more I use them the more hardcore I become. In order to fight the cooties Thomas brought home, I started diffusing Thieves Essential Oil. It's a blend of several oils: clove, lemon, cinnamon bark, eucalyptus radiata and rosemary. I added a drop to some hot tea and drank it and I applied it to the bottom of my feet at bedtime. I also took some benadryl to  help with the sinus issues I felt creeping up. I prayed hard that this would work because I desperately needed to start the Humira the next day. I didn't want to wait a week in order to get over a stupid infection. 

OH. MY. GOSH! I woke up the next day feeling just fine. No snot, no scratchy throat, no itchy eyes and no coughing or sneezing! I continued the Thieves in the diffuser all day until my Humira appointment (1st dosage is usually supervised by your doc's office the rest I will do at home). I cannot even begin to tell you what a relief it was to successfully fight cooties and be able to take the injections!

The other thing I do to stay healthy is drink this Ningxia Red juice. All you need is about a shot glass of it for 1 serving. I take 2 servings every day. It helps people like me whose guts don't absorb much nutrition, vitamins and minerals from food. It's packed with all kinds of goodies from foods that I absolutely cannot eat because of Crohn's. It actually tastes pretty good too.  I was surprised when I first tried it, I had pretty big doubts, but it gave me a little boost in my energy. Let's face it, who can't use a little boost in energy?! In fact, I'm out right now and I'm anxiously awaiting the UPS man!

Now the 2nd most valuable EO in my collection is Valor. Valor is another blend of several oils: spruce, rosewood, blue tansy, and frankincense. It's often used to stop snoring with great success. I, however, use it for night sweats from the stupid Crohn's. I'm talking drenched shirt, wet pillowcase and hair, sheets so wet I would lay a towel down night sweats! I'm on hormone replacement therapy due to a complete hysterectomy so I didn't want any other hormone type stuff and mess up that delicate balance. Besides, this isn't a hormone related issue, it's most definitely disease related. OK, back to Valor, I rubbed a drop on each big toe and 2 drops rubbed into the back of my neck at bedtime. NO SWEATING! Did you read that? NO SWEATING. I know it works because last night I forgot to Valor up and I woke up all sweaty. I won't forget tonight that's for darn sure. 

I'm not trying to sell you my voodoo. I'm just amazed at how well these oils work. I am very skeptical because I've not had much luck in the homeopathic world of natural medicine. I don't doubt that many of the homeopathic remedies work, I just never could find ones that did for me until now. I would love nothing else than to not take pharmaceutical medicine but that is not realistic for me. I'd be very, very sick with out them. I have come to believe that mixing the two worlds is very beneficial. I've found relief from joint pain, colds and viruses, mouth sores, dry eyes, nausea, insomnia and a long list of other issues from combining both regimens. This works for me and I love it.

Thursday, February 12, 2015

Standing on a Line and Fighting Back

I came across this profound quote today as I was mindlessly skimming Pinterest and it took my breath away. That's me! I actually said this out loud to the dogs curled peacefully at my feet.

Yesterday was Humira Starter Dose Day. I administered 4 shots via a push button pen into the fleshy part of my legs. The starter dose is 4 injections which burned like mad. The process was as simple as promised but the burning sensation of the medicine was a bit surprising. I had heard it burns a little but dang, after 4 shots that "little" burn was quite big. Once I get past the series of 2 shots I will go to 1 every 2 weeks. I can handle the burn of 1 injection every 2 weeks if it's working! I'm hoping and praying this is a miracle worker for me. I'm ready to feel good again.

This week marks 6 weeks from my surgery. My new stoma (Lilly II) is doing her job very well. She is actually prettier than her predecessor, sorry Lilly I. Lilly stands for lil' illy or little ileostomy. She's little more symmetrical and a tad smaller too. Good job doc.

So, in celebration of the 6 week release date, I bought myself a gift. Something to mark the new journey that lies ahead. Something tangible I can see and touch to remind me that I am a warrior. I found this necklace on Etsy about a week or so after writing the Fighting Back post. It's perfect and befitting of how I feel. The awareness color for Crohn's is purple and I love (and miss terribly) my boxing workout at Nick's Fight Club. I am nowhere near being able to go back to that at this point in time. I will have to work up some endurance first. It's such an intense work out when I'm at my best that I think it might kill me if I tried it right now. I can barely walk down the street to the mailboxes and back right now.

The last surgery I had in  December 2011 released me in March 2012 and I began running, well, more like fast walking but I did eventually work up to a decent jog. I call that running. And 1 week shy of the 1 year anniversary of Lilly I, I ran a half marathon. I have no desire to do that again but I am going to set a goal for 1 year from Lilly II's birthday. Things will be different this time because of the stupid Crohn's diagnosis so I'm not sure what that goal looks like at the moment. What will December 2015 bring? I'm actually kind of excited about figuring this out. I'm starting to look Crohn's in the eye and shake my fist, maybe even extend a certain finger.  I'm fighting mad and that might just be what saves me.

Tuesday, February 10, 2015

Tired, Anxious and Tired

I'm not having a very good day. Despite sleeping well I woke up tired. Damn autoimmune crap. ---See that's not a good sign, cuss words before 10am...
Well, I better get my act together because I'm hosting Bible study in less than 2 hours.

Addiction paraphernalia:
Bday gift from Thomas,
a chalkboard mug :)
Today's plan: wait around house for starter dose of Humira to be delivered. I'm feeling very anxious about this new medicine, of course it could be the cup(s) of coffee I am consuming. Some people turn to alcohol, I turn to coffee.
I'm nervous that Humira won't work. I'm hoping and praying like mad that it's the miracle drug my doc say it is.

I'm scared of never getting out of this flare. I haven't flared in over 3 years now and I forgot how awful it is. How it affects the entire body. This morning I ran my hand through my hair when I got up and ended up with a handful of loose hair. Great, that's just wonderful. I'm going to go bald as a bonus.
Humira info packet
complete with "talking pen" 

What if Humira doesn't work? I know I shouldn't go there but I'm having trouble controlling that part of my mind. I guess I will find out tomorrow what to really expect from Humira. I have an appointment with my GI to educate me on it and teach me how to do the injections tomorrow. The starting dose is 4 injections... yikes! However, I am excited about the self-administering at home aspect of the medicine. How convenient! When I took Remicade, it was an all day thing having to go to the diagnostic clinic and hook up to an IV and take the 3 hour infusion. Honestly it was exhausting. I would come home and go to bed most of the time. I've heard Humira makes you very tired the day of injection so I will be prepared for that. I've also heard that many who take/took it felt better immediately. God, please let that be true for me too.

I've read the packet and played with the pen which is like a real one only no needle and it talks. Kind of creepy actually but it does talk you through the process very clearly. I hope it's as easy as it seems. I give myself B12 shots with a syringe surely this will be easier as it "pops" the needle and pushes the medicine on it's own when I push a button. I won't even see the needle. This is a good thing, I sometimes have to pump myself up to do the B12 shot because it freaks me out to see the needle pierce my skin. It doesn't even hurt, I'm such a sissy!

I gotta go clean up for Bible study, maybe wash my mouth out too... It's going to take a lot of my energy just to shower. I hate these kinds of days. I always think of a ton of stuff I want to do but don't have the energy for. I'm also hurting today, lots of pain in my abdomen. Nothing unusual I think, just hurts. Another day of Hydrocodone, yay me.