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.

Saturday, February 7, 2015

The Beginning of Fighting Back

I'm tired of pain pills. I want to wake up and not feel my guts. I'd like to stand up from a chair and not double back over because my innards hurt.

Yesterday I thought I made some headway in this area. I only took 1 hydrocodone all day! This morning, different story. I just popped one with my coffee and (no judging) 2 homemade chocolate chip cookies a friend brought. Yes, I know cookies are not a suitable breakfast but back off, my birthday is tomorrow and I will eat what I want.

Birthdays. I will be 42 tomorrow and once upon a time that seemed ancient, not so much now. It was questionable if I would even turn 42 after the last few months of critical illness. This is the 3rd birthday that I wasn't sure I'd make in my career of chronic illness. Birthday 34 came after a 17 day visit to Scott and White for internal bleeding due to Ulcerative Colitis. The UC flared so bad that my intestines were extremely swollen with bleeding ulcers and shut down. I was just days away from other organs shutting down by the time I was checked in, my bladder had stopped releasing because of the pressure from my swollen intestines. 38 was another mile stone. At 37 I had 3 surgeries to remove my colon and rectum (all because of UC) and stopped breathing after the 3rd so that was fun. 38 was truly a blessing to see. Now I'm turning 42 with a new diagnosis of Crohn's Disease (which I'm still mad about).

I can't help but wonder what the future holds. I'm scared and yet determined to make the most of it. My earlier posts show just how much I'm struggling with this diagnosis and I still am but slowly, my mind is coming back to it's fighting stance. As the label "Crohn's" sinks in, I find I am more pissed off than depressed. I've got this disease so now I have a choice to let it make or break me. It's a daily battle, maybe even an hourly one.

Who knows what the future holds. I may have 40 more years or I may just have tomorrow. What I do know is that tomorrow isn't promised so we must make the most of everyday.

Sunday, February 1, 2015

The Invisible Emmy

I do this. I think I should win one of those statue thingies all the actors are striving for. In fact, I know a whole heck of a lot of people dealing with invisible illness daily who deserve a statue thingy.
We will call it The Invisible Emmy. 

What is an invisible illness?

Invisible illness is a disease that can be debilitating to a person inside their body but not manifested on the outside. Or at least, not be recognizable to most people as symptoms of illness. These diseases are sometimes hard to diagnose too. It took a year for me to be diagnosed with UC. My early symptoms were often treated as viruses because of flu like symptoms and severe diarrhea. It wasn't until I was bleeding profusely that I was finally taken seriously and sent to a specialist. I'm not knocking the docs I saw, I'm just pointing out the fact that diseases can often masquerade as something else in the beginning. It's unfortunate. 

IBDs (Inflammatory Bowel Diseases) fall in the category of invisible illness. Most IBDs such as UC (ulcerative colitis), Crohn's rarely have symptoms that are recognizable by their outward appearance.
There are a few 

The Woes of Diagnosis #crohn'ssucks

I just returned home from yet another hospital stay. This time I chose Scott & White Hospital in Temple, Texas to check out their ER and all their available testing equipment. I figure I've already met my insurance deductible this year, might as well have some fun.

On January 22nd I checked in with all the usual symptoms of dehydration, vomiting and diarrhea. My in-laws are very active with S&W through their board and various charitable organizations and were instrumental in helping us get the best care possible there. I will forever be grateful for their help.

S&W hooked me up with a team of no less than 5 GI's and consults from the head of the GI department. All were wonderful guys with great bedside manners and a thirst to find what was slowly trying to kill me. I do have to say this though--several looked to be about the same age as my kids... I'm not sure one could even really shave yet. Is this because I am staring 42 in the face? Will I be that "old lady" who thinks all the doctors are 12?

OK, sorry I digress.

To make a long story short, I under went several various tests. I drank endless amounts of barium and movi-prep (gallons of laxative solution) and rolled into big machines in order to light up the technician's computer screens with my unruly gut. I did a special MRI test that I have now forgotten the name of which found an area of inflamed intestine so a scope was the next plan of action. There were 3 scope procedures, 1  down the throat and 2 through my ileostomy. The first 2 scopes were not able to get to the inflamed area of my innards so the docs conversed for a bit and decided a 3rd scope was in order. The last scope required a special doctor with a special extra long scope to try to sneak a peak at a problem area in my gut. He is not located at S&W so an arrangement was made for him to come after his regular practice at another clinic was finished and scope me for my team of GIs. The scope which was done under sedation (thankfully) wound a camera through a huge portion of my intestines looking for the culprit of my illness in hopes of snatching a biopsy. No luck was had. It wasn't long enough to reach the area and therefore no biopsies were made. So back to the drawing board we went.

I must add here, after one of the MRIs the team told us they were almost certain this was Crohn's disease because it fit some of the criteria. I was in no mood to hear this and told them so. I think it stumped them when I was so adamant that it not be Crohn's. I am familiar with Crohn's after 10 years of living with UC and I didn't want ANY part of it. My poor hubby was at a loss too, we desperately wanted answers and here was a possible answer and I was refusing to acknowledge it. The GI team came up with a plan that I could live with, if they would prove it was Crohn's some way I would be willing to consider it. (Ha, like I really had any kind of choice in the matter.)

pill cam
When the scopes failed to produce evidence that Crohn's had indeed taken up residence in my small bowel the Camera Pill was introduced. This is a small camera enclosed in a capsule that takes 50 thousand or so pictures of the intestines as it makes it's way through the maze. It's honestly quite amazing and a little bit sci-fi with a flashing blue light like a beacon at sea in the dark of night. This little booger worked. It located 2 pretty nasty ulcers just hanging quite happily in my gut. These uninvited guests were the reason I spent 40+ days in the hospital over the last 10 weeks. The reason I've lost 12 pounds and look like death. I hate them. No, I loathe them.

This was the proof needed to officially write "Crohn's Disease" at the top of my chart.

It broke my heart.

It broke the last of my strength.

I feel very defeated.

I am lost and have no sense of direction anymore.

The happy ending to this story is that we know what is wrong and why my body was not behaving. The real ending is that I feel like the villain won.

I began a steroid treatment called Entocort which is designed to target the bowel only and rarely has side effects like those of Prednisone. I hope this is true, I HATE Prednisone. This little drug should help get control of the ulcers and send them packing. I think it's already working because many of my symptoms have lightened up and I am feeling better as well. I also will begin Humira injections every 2 weeks to control the Crohn's and supposedly "return to normal life." Like life will ever be normal again, no-I'll have to find a new normal to live normally with this stupid Crohn's diagnosis. I know how this roller coaster goes, I've been on one similar to it called Ulcerative Colitis. It's not fun. You sit next to the scary clown as you wind through the dark creepy tunnels.

Here's a great info site on Crohn's Disease. I don't have the energy to explain it because I'm still in denial.

This is where I'm at: I'm mad. I'm broken. I'm saddened by the fact that my body has turned on me once again. I don't feel like fighting...again. I was just so happy before all this started. I felt healthy. I ate right. I exercised. I took supplements to replace what my stupid messed up digestive system refused to absorb from food. I took care of my body and it still turned on me. WTH?

Now that I'm finally home I need to get a game plan together. Yeah, what I really want to do is crawl into bed and not surface again. This has to be a bad dream right? What else can I possibly do that I wasn't doing before to stay well? Oh right, I can add a big gun biologic medicine to be injected into my body every 2 weeks that will "hopefully" keep the disease in check. And as a bonus there is a whole list of wonderful possible side effects that go with this medicine. YAY ME.

Pardon me for my lack of enthusiasm, I'm just not feeling the love right now.

I'm finding to hard to respond to all the well wishes and words of love and encouragement I have been showered in by family and friends. I want to, I really do. My fingers hover over the keys but the words needed to respond just don't come right now. It's an incredibly beautiful thing to know you are so loved and supported but I'm finding it very overwhelming at the same time. I hate that I feel this way too. Please, please don't be offended, I really do love and appreciate it. I read every one and I am storing all of it up like a hoarder.  I need the support, love and encouragement but my mind is incapable of fully grasping it right now. Plus, I'm a little pissed and in denial of the stupid diagnosis and that's not helping matters. Please forgive me if I seem distant and cold. I'm having a moment. I'm processing. I'm lost at sea swimming in an armored suit. I'm sorry for when I behave badly, it's no excuse I know, but my mind is trying to digest what my gut can't.