Wednesday, November 12, 2014

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...

Monday, September 15, 2014

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...

Sunday, October 6, 2013

A Love Worth Crafting For

I'm pretty good at avoiding the temptation of those little white bins that line the check out at Michael's because even though they may only be a $1, my bill is always at least 100 times that amount (if I'm lucky) but this particular time I saw something I couldn't resist. I already had a project in mind but wasn't sure on the colors I'd need, so I scooped up two of each pattern and off we went.
 
 
As it turns out, I needed something gray, not black, for my project but my sister looked at me and said, "They do match MY bedroom."  Big sister took the hint and my wheels started turning again for project ideas. The patterns were perfect for her black and white bedroom but I wanted to come up with something not so cheesy but personalized since her and my BIL don't really have anything personalized up on their walls.  Then it hit me... this year they would be celebrating their 10th wedding anniversary.  I could throw a little of the typical cheesy in for that occasion ;)

Marriage is such an amazing thing but anyone who has made that life-long commitment knows that it is work!!! I've heard people say that marriage shouldn't be work because work is hard and if you are with the right person, it shouldn't be hard.  Well, thank you for your opinion but I call bull on that one.  You don't have a houseplant, never water it, and wonder why it died.  You water and nurture it because you want it to grow and bloom.  When it starts to droop, you figure out why and adjust what you are doing.  It can be challenging at times and the work it takes is constant but it's a labor of love, just like marriage :)

So yesterday I sat down with a few hours on my hands to knock this project out.  Giving into the "cheesy", I selected the word LOVE and decided to personalize it with EST 2003 (the year they were married).  This is one of the reasons that I love having a Cricut and using the Cricut Craft Room.  I just searched through my cartridges until I found my perfect font and planned it all out where I could see what it would look like before I cut my paper.


 
Then I sent my images to the Cricut
 

 
Using some paper on paper Mod Podge, I glued my letters to their shadows.
 

 
... and let them dry.  Aren't they cute?!?!

 
Then I used Aleene's Platinum Bond 7800 All Purpose Adhesive to glue the letters to the glass tiles. Let it dry according to the directions and it's done!
 
 
The only thing left is to put on something to hang them with but I thought it would be a good idea to let my sister decide that part.
 
 
 
Until next time...
 

Thursday, September 12, 2013

Trying to Come Out of Hiding

I've already messed up!!!

I said that I would blog every Thursday but I'm pretty sure I just skipped the last 4... Oops!!!  This is where I struggle in maintaining my blog.  I dislike ever feeling like I am complaining and sometimes Crohn's is just so difficult that I feel if I share everything that is going on with me, then it will sound like I am complaining.  I lead such a blessed life that I have a hard time letting others into my daily life with an autoimmune disease.  So bear with me if I disappear for a few weeks or so, I'm probably just trying to convince myself to come out of hiding.

With that being said... antibiotics, fistulas, abscesses, and drama SUCK!!!  There, I said it!  No long, drawn out explanation needed!  Moving on now...

This summer has been so chaotic for me.  It was a good chaos, the social kind, but still hard to juggle when your friends and family live 3 hours away and you have to travel alone because your husband works a ton (yes, I understand it's a blessing).  It seems like I was only ever home for a few days at a time.  I was seriously looking forward to fall coming for some down time until I looked at my calendar today to realize that I am booked out heavily until sometime in October... and then the holidays hit! Another plus to all the chaos is that it gives me lots to blog about so I shouldn't be disappearing anytime soon :)

Here are some ideas that I am tossing around:
  • The arrival of my niece Tegan (she's #10 in the niece/nephew department for us)
  • All of my craft projects I'm working on and the debate of opening an Etsy shop
  • My brainstorm of ideas to change the direction of my Crohn's treatment
  • My organization obsession and my household binder that I am updating since my last one drowned while camping
  • Anniversary Trip brainstorming
  • My holiday crafting plans
  • Crohn's Education
  • The life of a hunter's wife during hunting season
  • Our new truck (another thing my hard working husband was able to accomplish)
  • and some more surprises that I'll share when the timing is right ;)
I'll leave you with these thoughts that have been on my mind all week:

 
 

 
 
Until next time...

 

Thursday, August 8, 2013

Self Induced Chaos

It's taken me all day to decide what to write for well, two reasons.  One, because I am always inspired by the title and two, well, I am a procrastinator (I can admit it).  When I was younger, I was your typical procrastinator, to the extreme that I waited until the night before my science project was due to tell my parents about it (and that I was supposed to be doing it with a friend and we needed to go to the craft store... it was the best one in class though)!!!  Today, I'm not your typical procrastinator in the sense that I love to stay busy and love be useful at all times but I just do not have the energy!  I know, you're probably saying "yeah, yeah, yeah, join the club."  Truth is though, it's something that you just can't understand unless your have an autoimmune disease or something else that literally is causing your body to fight and harm itself (cancer, etc.).  It is the craziest thing and definitely one of the most difficult things about having Crohn's!!! I feel like I could fall asleep at any moment, I yawn ALL day long, never truly wake up (even though I never really sleep well either), and decide how I can do everything sitting down so I won't get too tired... I haven't stood up to shave my legs in the shower in years (no joke)!!! I've tried juicing and other drinks like it, Spark, and caffeine to no avail.  It's ridiculous, seriously!!! But anyway, this whole random run on really wasn't my point.

Self Induced Chaos... or Crohn's Induced Chaos, haven't really decided which yet or if it's both or if there is a difference at the moment. 

I always keep a long TO DO list in my household binder and my goal is to check one big thing off it a week in addition to my daily lists.  For example, it could be: a craft project, an organization project, getting my concealed weapons permit (crossed off), gutting and taking stuff to the Goodwill, taking our glass bottles to the recycling center (since the company refuses to pick them up even though the drop off location is their facility), or this week's... re-applying or renewing mine and my husband's passports.  I was done with my husband's and halfway through my form when I got online to do some research about a question I had and I realized that we both qualified for a renewal, even though both our passports had expired after we got married and that I could fill out the form online and print them off to mail.  Easy enough right?!?!  Nope, Self Induced Chaos!!!  Dang, there is something about having to fill out a government form that causes automatic stress and no one likes to have to do the same thing over again multiple times because you made a mistake.  I totally thought I was in the clear until I got to the whole name change part.  In the state I live in, there is no legal form to change your name once you get married and our marriage certificate makes no assumptions that you will be changing your last name.  So I go searching online for help, BIG MISTAKE, it's exactly like why you should never go to WebMD when you are not feeling good and self diagnose yourself... your cold or flu like symptoms start to look like cancer by the time you are done!  Everyone was saying different things but again, my state doesn't give you actual proof you change your name unless you court petition it, so I guess I'll send my marriage certificate in and see what happens.

Crohn's Induced Chaos... my house is a disaster!!! Okay well probably not really a disaster but definitely by my standards (and probably my husband's as well). Again, how do messy houses have to do with Crohn's, well, it probably has a lot to do with my earlier rambling about lack of energy and motivation.  That, and the fact that my surgeon put me on antibiotics for the next 3 months and they are making me "sick as a dog," for lack of a better analogy. I've only twice in my entire life been able to take antibiotics without having to stop due to them making me sick.  I'm trying to stick it out because it's a course we haven't be able to try before but if the extreme nausea and headaches do not go away soon, I am definitely pulling the plug on this attempt also!!! 

Ugh, next time I'll have something better to share!!! So, I'll leave you with these few thoughts and a good thing about my week.

 

Always true!!!
 


We all have struggles and also the ability to make others' loads lighter!!!
 
 
... and my highlight of the week!!! Harvesting some of our garden with my husband!!!

Friday, August 2, 2013

I'm Truly a Work in Progress

I have been meaning to get back to blogging for a while now (obviously, considering my last post was 11 months ago).  My computer has many unpublished and unfinished drafts but nothing I felt was complete enough to hit the "publish" button.  It's been the story of my life.  It's amazing how life passes us by when we accept the cards life deals us instead of trying to make something out of them.  It took me way to long to say "no more."  Don't get me wrong, I'm human and that doesn't mean that I won't go wandering that direction again but I refuse to sit there.

Not much has changed, but again, I guess that is what happens when you become complacent.  There are days when I say "let's do this" and then the next day I feel fortunate enough to get out of bed.  It's a crazy way to live life but I am grateful to have each day be a new day!!!  It is all about taking life day by day anyway... right?!?!

So here's the plan (that I told myself I would start 3 months ago)... I will be blogging at least every Thursday.  I set myself up a weekly schedule and my blog is the only thing that I am ignoring.  I think that for now until I get into a routine that I am going to be letting you all into my personal life a little more so that I get myself on a schedule and not just wait until I have something Crohn's related to share.  As I have said before, my disease is a part of me, but NOT who I am!!!

So here are a few pictures to get started:

I turned 32 this year and celebrated it with the love of my life!

We very casually celebrated our 4th year of marriage and 15 years of being together!

We started home brewing (for the hubby of course)!

Got in a much needed Girls' Weekend with my old co-workers!
Spending every last minute I can with my cutie pie nephew Jonah!

Had these cuties up to our house for a week!
... and like the crazy Auntie I am, I took them all to the zoo!
 
 

Thursday, August 30, 2012

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.