My World IBD Day/Birthday Wish

My birthday wish this year is not for a cure for IBD. 

This year, I’m asking for something that might be much harder to accomplish: better care for patients.

My wish is that no one ever wakes up post colonoscopy to be told:

 “You have a disease with no cure, come back in two weeks.”

Instead, I wish for an IBD army of advocates to be in every hospital, with arsenals of accurate information and resources they are ready to provide to that new patient so they are filled with hope instead of fear. Let’s avoid the Doctor Google search and arm patients with the facts right from the start. 

I wish for mental health care to become a standard component of the IBD treatment plan. When a patient feels isolated, lonely and full of anxiety at the thought of even leaving the house, it is hard to feel better or to heal at all. I wish we would teach coping skills and connect patients with mentors who can relate to their experiences. We must have the tools to fight IBD together and find ways to work, have relationships and (most importantly) enjoy life again. 

I wish for patients to be seen as people instead of dollar signs and numbers. I want to break the communication barrier between the front of the office, the patient and the doctor. Let’s celebrate the nurses and doctors who empathize, and teach the ones who don’t.  I want two-ply toilet paper in every hospital bathroom, and ear plugs and eye masks to help patients rest. Let’s stop with the 4 am blood draw and focus on the patient who needs rest in order to heal. 

I wish for prednisone to only be prescribed when absolutely necessary. I want patient care to move on to better alternatives for treatment that don’t cause such long term damage. We must educate about alternatives, and that surgery to remove an intestine is not a cure. We need to talk about life after surgery, about ostomy bags and j pouches and remission, and how the fatigue never goes away. 

My wish for World IBD Day is that we connect with one another, with pharmaceutical companies, hospitals and GI offices all around the world. Let’s share our stories and compare what is working and what needs to change. I wish for those changes that will improve the lives of patients and caregivers and for those that will give a little hope to the newly diagnosed. Let’s make a change and spark some hope globally.   
Happy World IBD Day.

Hope in a New Infusion Center

Good morning!

I’m writing to you from my Lazy Boy chair. My dog is under my feet and the cat is to my left contemplating walking over my keyboard. I have a cup of yogi tea this morning, Blueberry Slim Bliss Green Tea to be exact. So yummy. I just finished a delicious breakfast of leftover gluten free pancakes topped with a ton of strawberries and maple syrup. My husband made a huge batch of the GF pancakes yesterday, and we finally got the recipe right where they taste like real pancakes, not biscuits. Today mostly though, I feel relief. This last week was a struggle, and I’m ready for a new week with a fresh start. I love Sundays.

I had my remicade infusion on Friday, finally, so I slept about 11 hours on Saturday night. I woke up yesterday morning ate breakfast and then went back to bed for another 3 or 4 hours. It was a slow day, and I didn’t do anything productive but rest and allow the medication to do what it is supposed to do. I’m feeling better today. Not a ton of energy, but I don’t feel like I need to take a nap right now.

If you don’t follow me on Instagram (@flareuphope) or Twitter (@flareuphope), you probably don’t know the trouble that I went through over the past week to get this remicade infusion. I post in Instagram the most often out of all of these outlets. Anyway, I’m sharing this because it’s not an example of patient care, and it really taught me the need for patients to advocate for themselves, and to find new ways when you can’t break through the bureaucratic tape. Also, make sure to call a week before your infusion if they don’t check your order until you arrive. If there is a mistake or something is missing, they might not catch it until you arrive for your appointment, and at that time there is likely not  much you can do to get it resolved. Even if it is a standing order that has been used previously, that doesn’t mean it will be okay the next time. If you are concerned at all or don’t feel confident with the center, call ahead, double check the order and make sure it is good to go before you get there. I don’t think this is something a patient should have to do, it is something that should be reviewed ahead of time and it is not the responsibility of the patient to read an order that they have no training in reading. However, if they do find an error, they cannot “unsee” it and it is your care that gets put on hold. You have to advocate for yourself because no one is going to do it for you.

As much as I can avoid it, I will no longer do business with the hospital due to the lack of care I have received. It is a huge hospital in this area, and my PCP is affiliated with them. I will continue to see her because she’s my biggest supporter of my care, but I will not see this hospital for any other care beyond that. There was nothing she could do in this situation aside from make sure my complaint got to the right department and hope that change is made so other patients don’t go through this.

We are now driving over an hour away for these infusions. It’s not convenient, but at this point the level of care outweighs the distance. My new infusion center is at U of M, and my GI is there as well so if there are any issues ever, they can page her or the on call doctor and get an answer right away. They also read the orders before you arrive so it is ready when you get there and any questions are in the process of being answered. It is professional and patient centered. They way it should be.

Here’s the letter that I wrote to my primary care doctor about the situation that had occurred.

Hi Dr. *****,
I’m sorry to have alarmed you with the panicky message. I was having an anxiety attack and you were the only person I could think of who might have some pull to fix it at the time. I know now that there is not anything you can do but perhaps you can report this situation to the right people to make sure it doesn’t happen to someone else. This was not patient care and puts me at risk for a flare.
On March 17th, 2017 I called and scheduled my regular Remicade Infusion for 5pm on March 31st. I have been getting these infusions exactly every 8 weeks for almost 3 years. I have never missed one, I make sure to schedule the appointments with enough advance time and I arrive to my appointments early with all orders on file and labs completed as requested.
On March 31st I arrived at Sparrow Infusion Center at 4:50 for my appointment. I was given an ID bracelet, lead to my room and my vitals were taken. I settled into the chair with a cup of hot tea and waited for the nurse. At 5:20, I was told that my standing order, the one that has been on file for the last 6 months and that I have received 3 infusions with prior, had a problem. The problem was on the very last line, where it stated “IV filter every 8 weeks X 1 (term).” It was missing the word year in place of term.
The nurse explained to me that they were being audited at the infusion center and could not use this order as it stands, even though it had been used in the past 3 infusions exactly as it was with no issues or questions. I did have my new order, the only difference being the amount of fluids I received afterwards.  My new order was supposed to be used for the next infusion, but was dated in time for this one so could still be used.
The director, Dr. XXXX who must approve the new order had not been reachable since 1pm, and as it was now 6 pm on Friday, I was told there was nothing I or they could do to resolve this situation, there is absolutely no one else who can approve the order but Dr. XXXXX. I asked Nurse XXXXX to check with her manager and explained the building of antibodies, and she did, but they said the manager couldn’t even approve it, approval had to come from the director. I asked if I could come in tomorrow, she said no. At the very earliest it would be Monday but that was not likely, as it took 72 hours to get new orders approved, even with these circumstances where I was not at fault.
When I asked why this had not been caught earlier so that this situation would not have occurred and it could have been resolved, XXXXX stated she did not know but I could let Patient Services know my experience. I asked why this was caught at 5:20 instead of prior to my infusion and she said there hadn’t been time to review my order before I arrived.
I left 2 messages with the manager of the infusion center hoping that I can get in on this Friday as I cannot afford to miss three days of work this week to get this infusion, I get them on Fridays because I need 2 days to recover. I called the infusion center on Saturday and spoke with XXXX who confirmed there is nothing anyone can do, they DO NOT have a contingency plan in place for new orders and mistakes, and there is no back up person who can sign new orders, and only schedulers can set up new appointments and they are not in until Monday.

I called that infusion center twice last week and left more messages, and have yet to hear back from anyone. After the most recent phone call, I had enough and called U of M. I was able to get the first available appointment on Friday, and everything went smoothly aside from a blown vein, but that wasn’t their fault.

I’m hoping that the patient centered care will continue with this new spot and that the other infusion center will make some changes. I hate to think of anyone else going through this.

 

If you made it this far, thanks for reading!! I appreciate all of your support while I was going through this stressful and infuriating time fighting for my medication. How do you advocate for yourself in situations like this? Comment below or message me on Instagram or Twitter and let me know your tips. Have a great week!

 

Reflecting on 2016

What. A. Year. 

Globally and nationally the world has seen a lot of tragedies and set backs, and there are a lot of people who are ready to put this year behind them and move forward with hopes that 2017 has to be better. 

It feels almost awful to say this due to the sadness I’ve seen across the globe, and please don’t view me as someone who doesn’t see these things happen and who isn’t affected by them. My heart has been broken over and over again and I can’t count the amount of times I’ve said I’m losing faith in humanity, or even that I had lost faith. 

The 2016 year that I lived has been so full of love and joy it’s almost bursting at that have seams. 

In January 

We rang in that have helped new year as my last time under my maiden name surrounded by great friends. I had a remicade infusion. My fiance and I found an awesome new restaurant where I blessed out on eating potato nachos and a glass of wine. I didn’t worry about running to the bathroom or curl up in pain.  

In February 

There was lots of wedding planning, folding paper flowers, practicing yoga and waiting for spring.

In March 

An awful MRI experience but confirmation I was cancer free, more remicade and my first bridal shower.  Never have I felt so loved or grateful.

In April 

Another bridal shower where I was embraced and accepted into a new family, bouquet making with my tribe and another infusion. 
In May


I turned 28, celebrated our upcoming marriage with all of our couple friends and truly blessed out at the amazing bachelorette party my lovely friends threw for me. This month was full of all of my favorite things and favorite people. 

In June

I married my best friend and favorite person in the entire world standing in the rain and then danced the night away in a barn that was almost 200 years old. We adventured to California and explored the coast from San Francisco to Eureka. We saw a whale tale and beautiful scenery and got to just be together. It was absolutely perfect. June ended on a low note with some upsetting TB diagnosis but only made me stronger in the end, as hard as it was to accept. 

In July 
We had weekends full of friends and family watching fireworks, going to baseball games, dinners and festivals. 

In August 

We saw Paul McCartney in concert, had another remicade infusion and met a new doctor at an IBD center. So happy to have a good medical team on my side. We also celebrated the pregnancy of one of my oldest and dearest friends and threw her a baby shower. 

In September 

We went canoeing and had cookouts and a Baby Q, pool parties and we finished the TB treatment.  I travelled to my first IBD event as a consultant on a patient panel for Ulcerative Colitis. I got to fly to Miami and meet some of my IBD heroes in real life, and be a part of something bigger that could improve treatment and options available for those diagnosed with UC. 

In October 

We celebrated the marriage of one of my best friends to his perfect match, had another remicade infusion, introduced our dog to his brother and enjoyed some gorgeous fall weather.

In November

 I flew to Atlanta for another UC patient panel. We welcomed a baby boy, Bobby, to our tribe. We saw cranes migrating and adventured to the Upper Peninsula hunting down waterfalls for Thanksgiving weekends after 2 joyous Friends-givings.

In December 

My first IBD Twitter Chat, lots of IBD awareness, simple Christmases and a new feline addition to our household. 


I’m looking to 2017 with lots of self care, optimism and a sense of adventure. I broke my remission streak during my TB treatment but luckily was able to snap back into it quickly and have been feeling great. I will continue to do everything I can to stay here, but I know that often these things are out of my control and I can only do my best. Whatever happens.

I don’t make resolutions but I do make lists and letters of what I want to accomplish and the state of mind I want to obtain. I’m so excited for the plans I have for this year. 

What about you? How was your year? What are you most looking forward to?

Gratitude Challenge : Day 4- color 

My favorite color has always been blue. My eyes are blue, my parents have blue eyes, my bridesmaids dresses were blue, my bedroom growing up as blue at one point; I’ve loved the color for a really long time.

I wore this blue vogmask today (check out my instagram or scroll all the way to he bottom of the page) while traveling to protect myself from getting sick. I picked this pattern because because it was blue and was called Chakra and I love yoga, so it was a perfect fit. I never thought I’d be picking out a mask color to wear on an airplane,  but I’m grateful that there are companies who offer fun options for immunosuppressed people to wear. It makes me feel less like a sick person and more like someone who is empowered to protect her health. 

Hope in Plot Twists

I’m married!! Our wedding was an amazing rainy day and we left and spent the following week in beautiful Northern California, ending in San Francisco before taking the red eye back home the following Sunday.

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I was blessed enough to be able to enjoy my wedding and reception in remission, thanks a lot to remicade and my lifestyle choices that I practice daily. I was planning on writing this blog about my tips on how to deal with IBD on your honeymoon,  but the tides have turned, so I’m writing to tell you about why I can’t take remicade until further notice.

I had a follow up visit with my GI just to check in (standard appt every 6 months) the day after we returned from our honeymoon. 
I was shocked and saddened and depressed and furious to find out that they are denying my remicade treatments for future infusions.
I had a blood test come back positive to TB.  My skin test came back negative and so did the chest x ray. The doctor stated in the office that due to my noncompliance and failure to see an infectious disease doctor, they would no longer sign off on the remicade.
Let me interrupt here and state how at this moment I burst in to tears. Noncompliant?! I had no missed calls, no voicemails, no letters no GD portal notifications that they always say to check, absolutely NOTHING that told me this was going to happen . No referrals, no notice by pigeon carrier or telegraph. Nothing. (I even called Verizon to verify my phone records after I left the office. They never called me or left a voice mail on the one date they said they did, may 17th My appt was June 14th.) I had no idea I was supposed to be getting a referral for an Infectious disease doctor and that I needed to start treatment for a disease I didn’t really have.

Needless to say, the PA handed me at box of tissues and said, and I quote. “Don’t stress. Stressing causes flares.”
Followed by
“UC is a very serious disease. You could loose your colon. TB is also very serious.”
No help at all dude. Why do you think I was bawling in your office? I know UC is serious, I have it. I was in the hospital and almost lost my life because if it. I am very careful in how I eat, drink, sleep, and am active because of it. I know my disease. 

He said I needed to see and ID doctor asap, but it would probably take a month or so and then whatever he decides would determine how we proceed. So basically I had no infusions and no plan. Just a wait and see.

I messaged my PCP immediately after I got home and left a message with her receptionist.  Luckily my PCP is an angel and she was up until midnight working to get me an appointment the next morning. She has a Jpouch and knows IBD, and knows I’m not a noncompliant patient. She made it very clear she’s here to support me. I wish everyone had a doctor like her. 

I went to the ID doctor and, to avoid getting into all the technicalities bc I understood nothing when I left there, I’m going to explain the results like how my PCP explained them to me.

I don’t have active TB. I was probably exposed to TB at some point in my life and that’s why it’s in my blood stream. It very likely could be that the blood test is a false positive and I was never exposed in the first place.  Other bacteria etc can produce a positive when it’s not actually TB.
I still have to be treated for TB before we can even think about restarting remicade, false positive or no. If you’re on remicade and you get a positive TB reading, it’s no more remicade for you, perhaps indefinitely.
My treatment is 3 months long, starting tomorrow, 2 medications twice a day. I would miss 2 infusions. If antibodies don’t build, I may be able to restart remicade and it may still work. We don’t know. And I have yet to get answers from my GI.
My GI was asked by the ID doctor to see if I can get both at the same time. I’m doubtful that they will approve it and I have yet to hear back from them since Tuesday.

So, I’m starting off my marriage going from total bliss and gratitude to shock, saddness, anger and really pushing our in sick and in health vows.

At the moment, I’m processing the fact that I have to take these medications in the first place. I’m devastated that the drug that has brought me to remission and given me a chance at a semi normal life is being ripped away. I have a lot of anxiety and depression creeping in. But, I’m coming up with a plan, and I’m dealing with it. This won’t defeat me. Us. This life we’re building.

The first thing this weekend is to get the space in my house cleared out and make some positive energy, because I’m going to need all that I can get for these next few months.
I’m trying not to dwell on the things I’ll be missing, but instead thinking of it as a new path I’ll be taking. A plot twist, if you will.

It’s not easy to think like this. I’m writing this through tears right now. It sucks. But, I’ve got a great support system, and like my husband (!) said, they will be there every “suck of the way.” There might be rain right now, but like the sun is coming soon.  And now I’m done with the metaphors, and have brought you all up to speed, so here’s some happy wedding day photos.

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Hope in Paper Flowers

I’m getting married in June.
At my recent doctors appointment, my PCP asked , “So, you’re working full time, planning a wedding yourself, trying to stay healthy, workout and stay in remission all at the same time? Aside from every other life task,  am I missing anything?”
No, Dr. Miller. You’ve got it.
It’s overwhelming sometimes  managing your own care and trying to have a life at the same time. I’m constantly checking in with my body and asking myself a million questions about my physical and mental state. It’s like one of those questionnaires at the doctor :
Any bleeding today?
How many glasses of water did you drink?
How many hours of sleep did you get last night?
And then, add the wedding planning on top of that…
When are we meeting with the officiant?
Are we having a brunch?
Where will we buy our wedding bands?
How can I pay for this and pay my medical bills too?
And add on top of that all of the other stresses that come with planning a wedding (future in laws, bridal party organizing, pressure from outside sources to fit a certain mold etc etc etc) I could go on and on but I think you get the point.

It’s hard.

Over the next few weeks I’m sharing what I’ve been doing to manage my autoimmune disease and get this wedding how my fiancé and I want it to be, simple, beautiful, and about us. (Duh). If you aren’t planning a wedding but just living your life with with a chronic illness these tips may still be able to help. They are tidbits of what I’ve found to help me along the way.

1. Do what you can, when you can. It will be enough.

I don’t know how many times I’ve repeated this little mantra to myself over the past few months. I know a lot of people with chronic conditions fight a feeling of guilt when they aren’t able to accomplish all of the things “normal” people seem to be able to do.
Folks, none of us have super powers. Even so-called normal people.
Sometimes you decide you don’t give a flying pigeon about having real flowers and fake flowers are just fine. Or you decide you don’t want a brunch the day after the wedding to your MIL’S dismay because it is just too much work and too exhausting to even think about. It’s okay.
Some days you’re crossing items off your to do list  (one of many) like it’s your job. And some days the most work you get done is venting to your bridesmaids. Sometimes its looking at your bank account and saying, I can’t do anything this week.
All of this is okay.
Repeat it.
It is okay.
Do what you can.
A lot of the time all I can do is take old romance novels and cut the pages into squares and fold them into flowers. It costs me nothing, I think they’re pretty, and it goes with our wedding theme. You might have to get creative on what you can do some days. Some ideas on what you can do when you feel like you can’t do anything:
*Breathe. Seriously. Focus on inhaling and exhaling. It works.
*Pet your dog (or cat) or stuffed animal or heck even a rock if that’s your thing.
*Write in your journal.
*Watch Netflix
*Make lists.
*Color.
*Sleep.
*Listen to music.
*Call/text a friend
*browse Pinterest
Etc. Etc. Etc.

  Whatever it is, know that it is enough.

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There’s a lot of pressure sometimes from what other people think you should be doing. I’ll touch more on this later on, but for now, just know, whether you’re planning a wedding or just trying to get through the day while your body is raging war against itself, whatever you are doing is enough. Really, it is.

Hope in the mental and physical

I had an appointment with my PCP last week. I’m blessed enough to have a doctor that has IBD and can relate to exactly what I’m going through. Not only does she run every test possible and tell me about all the most recent research, she knows that IBD is more than just the physical symptoms.
We talked A LOT friday about my labs (which were beautiful btw) and the mental aspects of this disease.
The thing about most autoimmune disease is that is so hard for a lot of people to completely understand is that there isn’t a cure. Even if we did find a cure for IBD, there’s other existential organs that may surface with problems, she told me. I’m not ever really going to really be out of the woods. But I’m in a pretty good spot. The view is just fine, the trees are beautiful. Remicade is working, and physically were in pretty good shape and just have to keep ahead of it and keep my care managed. I’m getting an MRI to check for bile duct cancer, just to make sure we’re in the clear.
Mentally though, our conversation went something like this:
You wake up everyday and you have a disease. Some days you feel great. Some days there’s this looming possibility that you are going to flare. And some days you are flaring. You just don’t know. There’s a weight on your shoulders as you follow all the rules to take care of yourself and find what keeps you feeling your best, and sometimes that weight is SO HEAVY you just want to put it down and let loose and relax and laugh but you’re scared of what could happen.
I did a quick twitter survey a few weeks ago to see how many doctors talk about the mental aspects of having an autoimmune disease. The results were slim to none. I told my doctor about this and she wasn’t surprised.  Most GI docs are going to focus and getting your physical symptoms managed. And that’s ok. It’s important. But you have to manage the other parts as well. So, how?
You have to figure out how you’re going to face this disease. Every single day. Its not leaving. I’ve seen so much depression, anxiety, sleep disorder, eating disorders, emotional breakdowns and much more out here and on social media resulting from this disease. If you’re one of those people, please know you aren’t alone. I’ve been there. I might even be going through that right now too. It’s a cycle.

All of this being said, my blog is going to turn more it’s focus more i
to sharing how I’m dealing with this in the mental health aspect of autoimmune disease.  Now, disclaimer,  I’m not a doctor. Please don’t take this as advice. But I am a patient.  And I do have ulcerative colitis. And I’m going to share my experience here.
Stay tuned for more to come!

Remission

This girl is one of the most amazing people I have met in this community. Not only does she give all she’s got to fight her autoimmune diseases and everything that comes with it, she fights for everyone else that’s suffering. Through her #purpleproject care packages, caring tweets, and hilarious sense of humor, she’s always bringing a smile to someone’s face. I picked this post to share today to give a little insight as to what it’s like to have an autoimmune disease. “Remission is a sigh of relief, Remission is family, friends and never cancelling plans. Remission is Hope, a Future, Remission is smiles. Remission means normal.”
Kelly, thank you so much for all that you do and all that you fight for, and all the joy you bring to people who need it. I couldn’t be prouder to have you as part of my IBD family, and I know we’ll be in this fight together through Remission and beyond.
What is Remission to you?

#purpleproject

im not sure what Remission means. its not something im honestly all too familiar with. the last time i was in clinical Remission, was before i was diagnosed with crohns disease or ulcerative colitis. Image

i capitalize Remission for a number of reasons, but the main reason being i see it as a state, a royal majestic state. if you read much of my writing, im sure youre annoyed by my constant writing habit of writing in all under case, with very few exceptions.

as much as i hate to admit it, there is no way around “if”. “if i knew what being in Remission meant.. “if i had enough energy to finish my day as strong as i started it”.. i think every single day, i find myself finishing my “if” quandaries differently. “if” is one word i one delete from the language of chronic illness. its so limiting, so…

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#ShowMeTheMummy-Raise Awareness for IBD

One of my favorite IBD advocates and members of my support team, Colitis Ninja started this awareness campaign and I am so excited to participate in it. What you do, is wrap yourself (I would suggest having someone help) up with toilet paper and hold up a sign stating how IBD has affected you, good and bad. You can read more about the actual campaign on her blog www.colitisninja.blogspot.com

I chose to do my photo while getting my infusion. One of my soul sisters was there visiting with me and she helped wrap the toilet paper so my IV didn’t get in the way and took the photos.

#Showmethemummy

IBD took a lot from me. It’s taken a lot of money, from hospital bills to prescriptions to vitamins to infusions to special food. It took my ability to eat anything I wanted any time I wanted. It made me buy diaper cream and prep. H.  It took my 26th birthday and made me spend it hooked up to IVs waiting for the all clear to get remicade. It took so much blood I had to get blood transfusions. It took my reliability and made me person who sometimes has to cancel plans because they need to be home close to their bathroom, or they are too exhausted to even try to leave the house. IBD took my emotions and threw them into a blender. It took my muscles, it lowered my blood pressure, lowered my iron levels, and stole my energy. It stole my ability to live a carefree life.Thanks to the infusions I receive every 8 weeks, along with prayer, diet changes and daily yoga, I am as close to remission as I am going to get. And even though I no longer am losing blood (thank God),I still have an autoimmune disease that has no cure. I still fight every day to have as much of a “normal” life as possible. The infusions come with their own side effects, and I experience a lot of hair loss, joint inflammation, and am more susceptible to other diseases and virus because my immune system is lowered.

It’s hard to look at the positive of being diagnosed with IBD. But it has made me stronger than I ever have been before. That saying where you never know how much strength you have until being strong is your only choice? That fully applies here. I know that because I can battle this disease, I can battle anything that comes my way.

Having IBD has also made me re-evaluate relationships in my life, and I can say with a full heart that all of my friendships and relationships are high quality, strong and true. I have some of the greatest friends, am closer with my family, and have found a person who will be by my side while I battle this for the rest of my life. I have weeded out the flakes, and I couldn’t be more grateful for that. I don’t have time or energy for someone who is only going to be around when they need me.

IBD has also given me a dedicated yoga practice. I have learned so much about the mind body connection, and I practice yoga every day to stay in tune with my body and to relieve stress. On days when I can’t seem to get anything right, and my balance is off I can come to my mat for practice and remember when I couldn’t stand up long enough to take a 5 minute shower, or wash my own hair. And I am so proud of myself for how far I’ve come.

This disease has also brought me closer to God. I had a relationship before, but I had never fully experienced the power of prayer. Now I can feel it, and I know, and I talk to God every day. It keeps me grounded and lets me know that there is a bigger plan than all of this. I know that I have a purpose, and that comforts me and guides me.

Another unexpected perk (?) of IBD is the amazing circle of friends on social media and support groups that I have found. I often refer to them as my imaginary friends. I’ve never met anyone in my #IBDfamily personally. But I don’t know how I would have gotten through this disease without their support or encouragement. I am so inspired an encouraged by them, and so grateful for having all of these kind souls as a part of my life. It gave me the idea to spark hope and start this blog. It’s lead me to connections with others that would have never been possible without this diagnosis.

And that brings me to the final thing that IBD has given me. A sense of gratitude. I make it a part of my life every day to note the things I am thankful for. It can be something as simple as a cup of coffee, or an email someone sent today, or a phone call with my dad. Or as big as an IBD sister in the hospital healing. I’m thankful every single day, good or bad. I’m appreciative of what I’ve been given, because I know first hand that it can be taken away at any moment.

IBD is not a joke. It’s not a poop disease. It’s not something to be taken lightly. I wouldn’t wish it on anyone, but I do wish it was more well-known and understood. Do you have IBD, or are you a caregiver for someone fighting the disease? Please share your experience using #showmethemummy. Raise awareness with us.

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Hope and Guilt

Guilt. A bad feeling caused by knowing you did or thinking that you have done something wrong, according to Webster.

With this disease, I’ve been struggling with feelings of guilt. Guilt about taking medications, being in pain, being unable to attend events, eating, sleeping, and many other things. Mostly though, I feel my guiltiest when I feel like I’m being lazy, or at the thought of being viewed as lazy.  I often find myself pushing to get through an entire to do list of errands and tasks. And for what? To prove that I have what it takes to run errands and feel accomplished? To show I’m a functioning member of society? To show that I’m capable? These are all noble attributes and nothing worth scolding myself for. So I can knock tasks off my list without a single nap. What am I trying to prove?

I feel like I’m fighting my disease in this manner. I want to do it all. I want to be that friend, that girlfriend, that daughter, that advocate, that yogi, that writer, that inspiration. I don’t want to have this disease impose limits on me or give it control over my life. But, I’m learning, there’s a difference between succumbing to my disease and letting it defeat me: or accepting the disease as part of me and learning to live WITH it.

Yesterday, I was exhausted. And I felt so guilty about sleeping in and laying around for a couple hours watching Netflix and then reading out on the porch. It was Saturday, and I was down on myself for going easy. Granted, I slept less than 5-6 hours a night this week. I was released from the hospital a month ago. I returned to work full time 2 weeks ago. I’ve moved houses, started remicade infusion and now my body has been hijacked by steroid side effects. I’m wringing my eye mask out and stripping out of drenched clothes in the middle of the night from sweating. My face is swollen, my joints ache, and I swing from happy to sad to wanting to throw things every ten minutes. And I’m feeling guilty about wanting to do nothing for a few hours on a Saturday morning.

I don’t want to make excuses. I grew up with a mom who struggled with depression disorders and always needed naps before doing the dishes or couldn’t make it to events or clean or remember commitments because she was too tired. I understand more about her illness now and don’t judge her for needing that time. I know now that this is just part of her, and she does what she can. But I hate when I need it for myself. I have the ambition and I want to feel accomplished. I don’t want to be viewed as lazy or unable.

But I am limited right now.

I’m still healing. And this disease does not have a cure. This disease does not have a cure. When is this going to sink in? Even though I’m nearing remission, I’m still going to be battling this and dealing with symptoms for the rest of my life. This is an autoimmune disease. My body attacks itself. And I’m fueling the fire with guilt about it. So how do I go from battling and fighting to acceptance and building a life around it?

I need a plan.

First of all, time to stop the negative self talk. So, I’m tired. That does not make me a miserable excuse for a human being. It makes me human. A human with a chronic illness. Is it possible to be tired and happy at the same time? What a novel idea.

Step one: If you’re tired, be tired.

But you don’t have to be upset about it. Just be tired, do what you can, and move on .

So you can’t get to all the items on your to do list of the day. Can some things get done tomorrow? Of course. What is really important? Is it even on that list?

Step two: Determine what is important to you

PS.. It should be what makes you feel good. Why have a list of things to do that make you feel worse? You already have a disease trying to do that, remember?

Now time to face the big guns. As much as I don’t want to admit it, there’s a part of me that does care what other people think. Luckily, I have an awesome support system that listens to my ramblings and tends to love me anyway. Other people outside of my circle don’t matter so much. But my inner circle, I don’t want to disappoint them. Sometimes it feels like they’re waiting for me to be “back to normal,” whatever the hell that is. And I don’t know that going back to who I was before is ever going to happen. I might always be a little bit limited. My endurance and strength may never be where they were before, at least physically. Mentally I could blow away the competition in those two categories. I know they’ll love and accept me anyway, but again, I don’t want to disappoint them. They’ve fought right along with me in prayer and hope and positive thinking and I don’t want them to let them down by not healing fully. I know it’s something that will take more understanding and acceptance what this disease really is. And I have to come to terms with this as well. I’m just not the same. And that’s not a bad thing.

Step 3:Talk to inner circle. Believe them when they say you are strong and it’s okay to rest.

They don’t think you’re lazy. They want you to be healthy and happy too. You aren’t letting them down by taking care of yourself. This is the part that you need to do in order to heal and make those prayers answerable.

 

So, these are the things I’m going to work on while embracing (wince) my inflammatory bowel disease. Dear colon, I hug you. Let’s be friends, okay? We’re in this together. Anyone else out there deal with the guilt? How do you manage?