Thunderstorms and Clear Blue Skies

Oh my goodness, I'm actually sitting down and using our computer!  It almost feels like a miracle... to be actually sitting down and also to be typing on something that doesn't fit in the palm of my hands!  It has be a CRAZY past 5 1/2 months!!!  It was a super dark time filled with one thunderstorm after another and I am so thankful to be looking at the clear blue skies ahead!!!

The end of October I got sick, really sick.  I blogged about it so I won't go into too much detail but let's just say it got worse, a lot worse.  By the middle of December I couldn't handle the pain any more and was pretty much bed ridden. On December 17th I ended up having a procedure done to figure out what was going on inside and to alleviate some of my pain.  Let's just say that it did more harm than good...  Immediate after coming out of recovery, I could tell that my speech was slurred and that my tongue felt funny but the nurses thought that I'd bit my tongue and that the breathing tube might have scratched the top of my throat as it was being taken out.  I was still pretty groggy from coming out of the anesthesia so I really didn't know what was what.  When I got back to my parents' house, I was still slurring all my words so I was showing them where I bit my tongue and my dad gave me a funny look and said, "I think something is wrong, your tongue is crooked!"  So I looked and this is what it looked like...

After it wasn't any better the next day and my speech was the same, I called my surgeon and he sent me straight to the emergency room to be checked out to make sure that I hadn't had a stroke while I was under sedation.  I was diagnosed with Unilateral Hypoglossal Nerve Palsy.  It means that there was damage to my 12th nerve from the breathing tube during surgery.  There has only been 5 other reported cases of this happening ever, so I was like the freak in Room 12.  I was visited by every ER nurse and doctor and some even came over from the rest of the hospital to take a look.  I also learned that it could be permanent and that only one case had a fully recovery (after 5 months of therapy).  Thank God though my speech improved after 2 weeks!!! My tongue is still crooked but not nearly as bad.  My neurologist can't find any damage to any other area that the 12th nerve controls so I will take that as a blessing!!! 

The reason we did the procedure in the first place didn't pan out either.  The pain and the flare just wouldn't go away and I was continuing to lose weight like crazy!!!  By the middle of January, I was down 18 pounds and on a small framed girl like me, there isn't many places the weight can come from!  I felt like I didn't know who I was any more.  My life felt SO out of control and to top it off, my husband's job was coming to an end and we had to figure out where to go next.  And then BOOM... without any preparation or putting any extra money aside, my husband decided that we were going to buy a house!!!  He literally said it, he found a house he liked, we contacted a real estate agent, she showed us the house a few days later, we came home and got financing, put in an offer, and closed exactly one month after the day we looked at the house... it was one of the quickest closings that I'd ever seen!!!  But oh my goodness, was it stressful on me (especially since I had no clue what to expect)!  Trying to read and sign everything, and communicate with a real estate agent, a loan officer and your spouse (who wanted me to be the one to handle everything) while you are in so much pain, weak, and suffering from the most severe and constant migraines of my life had me living in a dark room and only getting up to find the next piece of information they needed or to go throw up whatever small amount of food I had managed to get down!

Once it was all over though, I had one last storm to get through... the actual moving and commuting between the 2 houses.  We weren't expecting to find something so soon and close so quickly so I ended up packing the house after we signed and we rented a uhaul the same weekend and moved the majority of our stuff to our new house... 4 hours away from the current one we were living in!!!  It was crazy! We spend Valentine's Day moving and returned the next day.  For the next month, I commuted back and forth between both houses weekly and we had so many extra trips to get the rest of our stuff because my husband was living at the old house while I was living at the new one.  Finally in mid-March, my husband got his lay-off and we were officially both in our new house!!!  

We have been crazy busy! The house is small but perfect for the two of us but there are many projects ahead to make it our own!  So far we've gotten a new refrigerator and a washer and dryer.  So happy to not be using our TINY refrigerator any more and not to look at it after my husband put it down on top of my foot... I'll save you the gory pictures of that one (my foot is still bruised and messed up but at least it isn't broken).  We've also started on our project list.  My husband is AMAZING and can build anything I ask and never stops working so we make the perfect team... I design and he makes it come to life.  He's already built me shelving in the linen closet, made me a new custom closet, and built shelving in our laundry room/pantry.  I'll post all those later as we finish things up but for now, I'll leave you some pictures of the view!  It's literally heaven on earth here!!!

One side of our house faces Whitehorse Mountain!

These are the mountains on the other side of the house!

And this is the view from my living room window!!!

See why I'm in love!!!

... and one more because it's just so dang gorgeous!!!

Enjoy your Easter/Resurrection Sunday!!! 

Until next time...

Living in a Constant State of Being "Not Out of the Woods Yet"

I haven't written about Crohn's in a while because part of the battle of dealing with a chronic illness is that it can kind of be depressing and people sometimes don't understand that you may need to talk about it and it's not because you're trying to complain or get sympathy. It's hard and some days are REALLY hard and after a few weeks of only days that are hard and really hard, it's time to talk about it. Like it or not, that's where I am at tonight.

A few months ago my gastroenterologist decided that labs were coming back great and I hadn't been admitted to the hospital in a while but my Crohn's was still showing no signs of going into remission. We had my Remicade infusions on an every 8 week schedule but I was still going into a full flare by week 6 until about a week after each infusion (essentially still spending almost half of my time in full flare mode). The only thing that keeps me out of the hospital at this point is that I rarely heal from one fistula to the next so my tissue has no time to repair before it's ripped apart again and due to that lack of strength and healing time, that breakdown is doing part of the job my surgeon would be doing if I went in. My gastroenterologist thought we should get a little more aggressive with the Remicade and change me to an every 6 week schedule.

In September I had my first infusion at the 6 week mark and wouldn't you know it, I was doing great and then flared at the 4 week mark (again, like before, 2 weeks before my infusion). I was shocked but thought maybe my body was just off and after my next Remicade, I'd start to feel better again. I had my 2nd infusion on the new 6 week rotation 4 weeks ago now but I never got any relief. I've essentially been in between hard and really hard days for 6 straight weeks now with the last 2.5 being nothing short of torturous on my body. The last 3 days have had me praying like a mad woman and the husband and I going back and forth on whether it was time to make the long drive to the hospital. On Sunday night I looked at him and said, I think I'm down for the count. He asked if that meant I was ready to go and I asked for 2 more days. He said, I just wish there was something I could do for you and I thought about it (wishing there was something too) for a minute and responded, you could come pray with me. My husband looks hard at me, immediately turns off the tv, and comes and sits down on the couch where I'm laying, grabs my hands, and starts to pray, hard! Yes, I'm seriously blessed by him and will never forget that I am married to a very special man!!! I don't know the reason for my struggles but I never doubt God has a plan for them.

Since Sunday night, I have been "down for the count" with a few moments of short lived attempts to throw in a load of laundry or make food and read about a hundred random texts from my husband while he's at work making sure that I'm "relaxing" or  "resting" (both in quotations because they are nearly impossible when you are in pain). The pain has been increasing at a steady rate with tonight bringing me to a point where I almost asked my husband to come home. I decided to play doctor on myself (I'll spare you all the details) and have finally got some of the pressure of one of the abscessing fistulas to release but I'm definitely 'not out if the woods yet." With that being said, I'm sort of laying/sitting on a heating pad right now so the heat can draw more of these nasty "toxins" out of my body so the swelling can go down, I can get some healing going on in this "broken" body, get some strength back, get my booty out of bed, and get back to life as I know it.

Any extra prayers you can send up would be amazing and much appreciated and I'll leave you with a few quotes, which have seem to become my norm here :)

Never forget what you are going though always has something for you to learn.

Let your struggle make you stronger

and share what you've learned!!!

Until Next Time...

When You Know It's Time to Speak Up

"If you think your little blog is going to help someone, then good for you."

Those are the words (in a sarcastic voice) that put a halt to my blog last fall.  They came from someone that I care about and also someone that I didn't think was even aware that I had a blog.  That one comment also brought a few things to my realization: one, that I was indeed being talked about behind my back (if my blogging was brought up); two, I had let myself care too much what another thought of me; and three, I needed to take some time to find my voice and direction again so that no one else's words would again be able to attach itself my soul.

Over this past year I have done a lot of de-cluttering in my life of anything that could bring me down or take away from my purposes in life.  I still have work to be done, I always will... it's part of being human (we're flawed).  Recently, I removed Facebook from my phone and iPad along with un-friending and un-following a few people.  I absolutely love seeing what my friends and family are up to, especially since I am still living three hours away, but I needed to get away from making checking it a thing I was doing out of habit (over and over again), getting my phone out of my hands, getting away from negativity, and feeling like I was giving more of my personal information away every time I was asked to update the app.  It's sad that we (I) use social media as a way to keep others "close" but especially for me, I cant stand to talk just to talk.  I know that may sound strange from someone with a blog but let me explain myself... When people talk to talk, it annoys me on a few levels: first, you can only talk so much before you start talking about others and eventually start gossiping; second, repetition, it's not fun to talk to someone when all you ever do is talk to the same person about the same thing over and over again; and third, I am more drawn to the story of something.  Don't just tell me that you work out every day, what you did today, what you got, what you want, that you are annoyed by this or that, that you hate life, that someone doesn't have to deal with what you have to, or your excuses; tell me why, what it does to you or how it makes you feel, how it makes you grow, how you want to overcome it or how it gives you hope or drives you.  I am interested in your story, your growth, your real struggle, your hopes, your goal, your purpose because those are the things that mean we are loving, growing, being compassionate, not comparing/judging, and LIVING!

In this journey of re-grounding myself to my purpose I recently came across this book Speak by Nish Weiseth. The front cover says it all, how your story can change the world.  I am SO excited to read it.  After only reading the Forward and Introduction, I knew I was finally ready to return to blogging.

Join me in this journey!  Let your story be heard!  Whether it be good or struggle, we can all grow, learn, change, find strength, and bond through each other's experiences.  Introduce yourself to me and tell me your story!!!

My Favorite Quote

Until Next Time...

Imuran (azathioprine)

Here's some reading material on the new drug that my Doctor has put me on.  I highlighted a few areas of concern that I have. I have been fighting taking this medication for almost a year now but I just want to be healthy and live a "normal" life like everyone else.  I don't know what the future holds and this isn't the direction that I wanted to go... but I'm trusting that there is a reason for all of this and that everything I am going through has a purpose.

Warnings:

Azathioprine may increase your risk of developing certain types of cancer, especially skin cancer and lymphoma (cancer that begins in the cells that fight infection). If you have had a kidney transplant, there may be a higher risk that you will develop cancer even if you do not take azathioprine. Tell your doctor if you have or have ever had cancer and if you are taking or have ever taken alkylating agents such as chlorambucil (Leukeran), cyclophosphamide (Cytoxan), or melphalan (Alkeran) for cancer. To decrease the risk that you will develop skin cancer, avoid prolonged or unnecessary exposure to sunlight and wear protective clothing, sunglasses, and sunscreen. Tell your doctor immediately if you notice any changes in your skin or any lumps or masses anywhere in your body.

Some teenage and young adult males who took azathioprine alone or with another medication called a tumor necrosis factor (TNF) blocker to treat Crohn's disease (a condition in which the body attacks the lining of the digestive tract causing pain, diarrhea, weight loss, and fever) or ulcerative colitis (condition in which sores develop in the intestines causing pain and diarrhea) developed hepatosplenic T-cell lymphoma (HSTCL). HSTCL is a very serious type of cancer that often causes death within a short period of time. Azathioprine has not been approved by the Food and Drug Administration (FDA) for the treatment of Crohn's disease or ulcerative colitis, but doctors may sometimes prescribe azathioprine to treat these conditions. If you develop any of these symptoms during your treatment, call your doctor immediately: stomach pain; fever; unexplained weight loss; night sweats or easy bruising or bleeding.

Azathioprine can cause a decrease in the number of blood cells in your bone marrow, which may cause serious or life-threatening infections. The risk that the number of blood cells that you have will decrease is highest if you have a genetic (inherited) risk factor. Your doctor may order a test to see if you have this risk factor before or during your treatment. Taking certain medications may also increase the risk that your blood cells will decrease, so tell your doctor if you are taking any of the following: angiotensin converting enzyme (ACE) inhibitors such as benazepril (Lotensin), captopril, enalapril (Vasotec), fosinopril, lisinopril (Prinivil, Zestril), moexipril (Univasc), perindopril (Aceon), quinapril (Accupril), Ramipril (Altace), or trandolapril (Mavik); trimethoprim and sulfamethoxazole (Bactrim, Septra); and ribavirin (Copegus, Rebetol, Virazole). If you experience any of the following symptoms, call your doctor immediately: unusual bleeding or bruising; excessive tiredness; pale skin; headache; confusion; dizziness; fast heartbeat; difficulty sleeping; weakness; shortness of breath; and sore throat, fever, chills, and other signs of infection. Your doctor will order tests before, during, and after your treatment to see if your blood cells are affected by this medication.

 What special precautions should I follow?

Before taking azathioprine,

• tell your doctor and pharmacist if you are allergic to azathioprine, any other medications, or any of the ingredients in azathioprine tablets. Ask your doctor or pharmacist for a list of the ingredients.
• tell your doctor and pharmacist what prescription and nonprescription medications, vitamins, nutritional supplements, and herbal products you are taking or plan to take. Be sure to mention the medications mentioned in the IMPORTANT WARNING section and any of the following: allopurinol (Zyloprim); aminosalicylates such as mesalamine (Apriso, Asacol, Pentasa, others), olsalazine (Dipentum), and sulfasalazine (Azulfidine); and anticoagulants ('blood thinners') such as warfarin (Coumadin). Your doctor may need to change the doses of your medications or monitor you carefully for side effects.
• tell your doctor if you have any type of infection, or if you have or have ever had kidney disease.
• tell your doctor if you are pregnant, plan to become pregnant, or are breast-feeding. You should use birth control to be sure you or your partner will not become pregnant while you are taking this medication. Call your doctor if you or your partner become pregnant while you are taking azathioprine. Azathioprine may harm the fetus.
• if you are having surgery, including dental surgery, tell the doctor or dentist that you are taking azathioprine.
• do not have any vaccinations during or after your treatment without talking to your doctor.
 

What side effects can this medication cause?

Azathioprine may cause side effects. Tell your doctor if any of these symptoms are severe or do not go away:

• nausea
• vomiting
• diarrhea

Some side effects can be serious. If you experience any of the following symptoms or those listed in the IMPORTANT WARNING section, call your doctor immediately.

• rash
• fever
• weakness
• muscle pain

Azathioprine or 6‐mercaptopurine for maintenance of remission in Crohn's disease

 

Azathioprine (1.0 to 2.5 mg/kg/day) used among patients with non‐active Crohn's disease is effective for reducing the risk of disease recurrence over a 6 month to 2 year period. Higher doses of azathioprine (2.5 mg/kg/day) are more effective than lower doses (1.0 or 2.0 mg/kg/day) for preventing disease recurrence. There is also evidence that azathioprine may reduce the need for steroid treatment which could help reduce steroid related side effects.  Azathioprine appears to be more effective than 6‐mercaptopurine but this may be due to the relatively low dose of 6‐mercaptopurine (50 mg/day) used in the one study assessing this drug.  The long‐term effectiveness of azathioprine and 6‐mercaptopurine is unclear due to the short duration of the studies (6 months to 2 years). Azathioprine and 6‐mercaptopurine appear to be slow acting drugs. They are associated with some uncommon but serious side effects. These include suppression of the body's ability to produce white blood cells (which fight infection) and platelets (which allow blood clotting to occur), inflammation of the pancreas and an increased risk of lymphoma. Patients who may benefit from this therapy include those whose Crohn's disease is chronically active or flares frequently. Azathioprine or 6‐mercaptopurine may also benefit patients who are dependent on steroids but have experienced steroid side effects, or for whom steroids no longer work. The choice to use azathioprine or 6‐mercaptopurine should be made after careful consideration of the risks and benefits of using these drugs.

An Online Enemy of Sorts

I've been searching all night for blogs of others with Crohn's Disease in hopes of finding someone else's journey that I could relate to or see how this wonderful and lovely (major sarcasm there) disease affects others.  I have to say that they are not many.  That's a good and a bad thing depending on which way you care to look at it.  What ending up happening though was that I had a revelation that thoroughly freaked me out and is definitely not healthy for my state of being at the moment.

Everyone's journey with Crohn's Disease is different.  It unfortunately has the capability to jump all over your digestive tract which is why everyone does not respond the same to the disease or treatments.  I've never found anyone with likeness to my journey.

Here's the shortened (ha ha... that's a joke) version my last 14+ year journey with Crohn's: 

I was diagnosed at 15 with Ulcerative Colitis after being told for a month that it was just a really bad stomach flu (thank goodness for my strong willed amazing mother who knew better than that).  I was immediately put on Salfasalazine and after a while I started to feel better so I weaned myself off of it.  The spring of my Jr year in h.s.  I became extremely ill again, went back on the meds, and immediately made an appointment to see a G.I. (which was booked until July).  By the 4th of July I was so sick that I could eat and couldn't take my meds because I threw EVERYTHING up, even water.  My amazing boyfriend (now husband) spent those last few days carrying me around because I was too weak to stand longer than a few moments.  On the day of my appointment, the G.I. took one look at me and said that she was admitting me into the hospital and we could talk after I was checked in.  That first stay at Doernbecher's Children's Hospital was 31 days.  During which time I was put on TPN (a feeding tube that bypasses the stomach) so that my colon could rest but it didn't do what they'd hoped and 3 weeks into my journey they let me know that I needed to have my colon removed. My family prayed and talked but the doctors said that at this point there wasn't any other choice. They showed me the horrible pictures of what my poor colon looked like but it wasn't until after I came out of surgery that they told me that if I hadn't gone with the surgery when I did or even at all, that my colon would have burst and all that poison in there would have killed me.  This also was the first I'd heard of Crohn's (the un-curable sibling to U.C.) but they wouldn't know one way or the other til they looked at it during surgery.  Best case scenario they should be able to create a j-pouch on the inside with my small intestines so I wouldn't have to have a permanent colostomy on the outside of my body at 17.  The whole process would take 3 surgeries to complete during the course of next 6 months (wasn't quite how I thought of spending my senior year in h.s.).  Surgery went well and they were 100% sure they were dealing with U.C. and not Crohn's which meaned that life would go on as normal after I healed because without a colon you can't have U.C.  I made it through my senior year very exhausted, not at school a whole lot, and a little cautious (hiding a temporary ileostomy can do that to a teenage girl) but with high hopes for the future.

I started college that next fall really excited but still feeling really exhausted.  I kept getting what they called pouchitis - an infection to the little reservoir they'd created for me.  I also never returned the health they expected me to.  During my sophomore year I lost my health insurance and it all started down hill from there.  That summer I exhausted myself that my anemia became so bad that my legs became covered in welts that looked like someone had hit me repeatedly with a baseball bat.  From there I got my first fistula.  I had no idea what was going on or what it was and no doctor to talk to.  I went to the emergency room and came home in tears because the doctor had no idea what I was talking about tried to tell me it was an STD (I was a virgin and not sexually active).  It would heal and go away and then return.  I was hospitalized many times over the course of my Jr and senior year in college and it even caused it so that I only completely my degree as far as I could to graduate... completely missing out on completing my program and student teaching.

It wasn't until after college that my mom could get me on her health insurance for a short while.  I went back to the doctor and they kept saying how they must have missed some of the U.C.  It wasn't until I had a major fistula that sent me to the emergency room that we finally started talking about Crohn's.  The light bulb:  U.C. doesn't have fistulas but Crohn's does... and Crohn's is not curable.  I then found out the next big blow.  In Crohn's you never want to do a complete removal of an organ because the disease will just attack another digestive organ, you are just supposed to do re-sectioning.  But I'll never know if the right choice was made to just take it all out... I mean I saw the pictures and they were really bad... but my doctor's not around to ask, he's now called Dr. Death and sitting in jail after being charged with errors that caused the deaths of many of his patients... but who's to say whether it was a mistake or it was just the way that my path with this disease was taking.  I lost my insurance again due to age but got set up with a Dr during one fistula surgery that was willing to help out however he could.  He got me set up with Pentasa and infusions of Remicade but both were too expensive without insurance that I was told I couldn't continue without paying my bill.  I really wasn't on it long enough to know if it worked but once off you can't go back because you become allergic.

This roller coaster has been they craziest thing.  It's only gotten worse as time has gone on.  My worst fistula was 2 years ago and came 3 months before we got married.  This one decided to travel outside of my digestive tract into another organ and I had to take an entire month off of work to re-cooperate... re-cooperate, not heal.  My poor husband, being married to me must be a nightmare.  Neither one of us had any clue that the road was about to get so bumpy... nothing in the past 11 years of our relationship had prepared us for the newness Crohn's had in store for our future.  Each fistula has gotten worse... to the point that I'm starting Humira next week (which I've done everything possible to avoid).

Thinking about my journey and everyone else's tonight is what freaked me out so much.  Tonight I saw a picture of a woman who had a fistula that traveled out to her tummy by attacking a scar from a previous surgery.  Sounds disgusting and scary but it's not what scared me.  What scared me is:

1. I can control most of this disease but I can't control the fistulas. From what I've read, anyone who's ever "cured" their Crohn's has never had a fistula.
2. I can't have a resection to remove part of the disease like everyone else because none of my fistulas begin in any place that can be removed without removing the little hope that I have for not having a permanent colostomy for the rest of my life.  As my Dr says, we loose that and we loose all other options.
3.  If these injections don't work, outside of some miraculous healing, I am out of options
4.  I'm scared -- I can't stand admitting it but I am.  I've been strong for 14+ years.  I'm always the optimist.  I'm not worried about getting through this... I have a blessed life and will no matter what.  But how am I going to feel if it doesn't work and this disease will have stomped on every path I thought I was supposed to travel down.  What will happen to the things that I cherish most if this same path keeps it's unending circular shape and nothing changes?!?!

Sorry to unload this but I can't wake up the hubby to confess my fears because we both have to be at work in a couple hours and he needs his sleep. 

Just goes to show you that all the information on the Internet isn't good for you ;)