autoimmune disease

Hope Warrior -Kristen Boehmer

Posted on by flareuphope

It’s a new Hope Warrior Wednesday!

I’m so happy I get to share a little bit of Kristen’s story and how she copes with having a chronic illness. She’s a busy gal, but was able to answer a few questions. Make sure to check out her website Living Loving Paleo and her instagram @livinglovingpaleo for some mouthwatering food photography and her life with Crohn’s Disease.

Meet Kristen!

I was checking out your story on your website (I will link it here), and boy have you been on an unbelievable journey. I know you were young when you were first diagnosed with Crohn’s Disease, but do you remember how you felt when you received the diagnosis?

Being diagnosed with a chronic disease isn’t something that I could fullyunderstand as a kid, which in some ways, made it easier to cope with. My parents immediately took full responsibility for my health, but at the same time, I did have to grow up quickly.

Taking 96 pills a week at age 12 is a lot to swallow, no pun intended. What would you tell a pre-teen going through something similar right now?

I would tell a pre-teen that no matter what, they should never, ever give up. It may feel like your world is falling apart, but if you allow it, your illness can actually become your greatest gift.

It is really frustrating when I feel like some doctors are not hearing me. It sounds like you went through something similar. How do you advocate for yourself now?

I’ve found a practitioner outside of conventional medicine who really listens, and that’s made all the difference. Thankfully I’m healthy enough now that I don’t need any sort of outside intervention.

What is your current treatment plan? (Natural and pharmaceutical if applicable)

After spending many, many years on medications, I’m now able to control my disease completely through diet and lifestyle. I eat what makes me feel good and live a life that I love.

 Your website has lots of delish Paleo recipes. What inspired you to start Living Loving Paleo?

I wanted a place where I could share my journey (outside of social media) as well as my recipes, so a blog felt like the perfect format.

How do you balance working full time with managing your chronic condition and spending time with your family?

While I have Crohn’s Disease, it’s thankfully no longer something that I need to manage. I work from home and accomplish much of what I need to get done while my husband’s away at work (he works 48 hour shifts as a fire fighter), so that when he’s home, we can spend much of our time together.

You talk about the fatigue, waking up tired and going to bed tired when fighting infections and the ongoing battle an autoimmune disease fights with your body. Do you still have days like these? What do you to conserve energy?

My health is by far the best it’s ever been, so thankfully those days are VERY far and few between! If I do come down with a cold or the flu, I simply set everything else aside and completely focus on my health. My immune system is fully functioning now, so I’m very rarely sick for more than a couple days.

 We went to San Francisco on our honeymoon and feel in love with the city. I am so jealous that you get to live near a city with the best coffee and some awesome food options! Eating at a restaurant can be difficult for IBDers who are afraid or embarrassed to ask their food to be cooked in ways specific to their needs. Do you have any tips for handling these scenarios? 

I have a great dining out guide where I’ve shared all my best tips and tricks! It

can be found here – http://livinglovingpaleo.com/2016/06/15/tips-dining-

paleo/

I truly believe that our environment can play a huge part in healing. Do you have an area in your home that helps you gives you the hope you need to keep fighting? What does it look like?

I really do my best to keep my entire house filled with calm, healing energy.

How do you treat yourself when you want to indulge?

I get a mani/pedi or a massage and take myself out to lunch!

What are some of your favorite books and or music/podcasts?

I love reading and have too many books that I’ve enjoyed to list off. As for podcasts I love Balanced Bites, The Sessions With Sean Croxton and The Tim Ferriss Show.

If someone were to ask you to tell your story in one sentence, what would it say?

Although my journey hasn’t always been easy, it’s given me the most beautiful life I could ever imagine.

 Do you have a mantra or an image that you use to give you strength or encouragement?

I recently heard Tony Robbins talk about achievement versus fulfillment, and it really stuck with me. I don’t have a specific mantra or image, but I believe in filling my own cup up before I can give to anyone else. When I’m fulfilled and loving life, I put out my best work.

What are some of your hobbies and activities you enjoy?

Cooking, reading and being outside with my husband and dogs.

Where are some of your favorite places to travel?

Hawaii for sure!

 

Who gives you hope? Do you have any “Hope Warriors” that inspire you?

While my husband has always been my number one supporter, he’s taught me to love and cherish myself first, so I’ve become my own “hope warrior.”

 

Thank you so much for sharing, Kristen!  I’m so glad you’re doing well and enjoying a beautiful life. Love your story, and I’m honored to share it. 

Happy Wednesday Folks!

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Will Essential Oils Cure IBD?

Posted on by flareuphope

No, they won’t. There is not a cure for IBD. 

They do, however, smell amazing and have some pretty cool benefits that could improve your attitude and maybe ease some physical symptoms, and perhaps much more. (Disclaimer: I am not a doctor, I am not providing advice, I’m sharing what I learned at this workshop and my experience with essential oils thus far. I encourage you to do your own research.)

I took an essential oils workshop last week at Hilltop Yoga in Oldtown and really gave my scent sorter a workout. It was very interesting and educational, and I took away a few items that I’m bringing to my home environment. Maybe it will help ease some symptoms and increase quality of life or maybe it will just make my home smell amazing. I can find nothing wrong with being surrounded by good, natural smells that I enjoy.

So what exactly are essential oils? Essential oils are taken from plants in concentrated forms. Oils are broken down into a few categories depending on the plant itself. They could be roots, trees, herbs, blooms, seeds or other plant parts.  For example, Chamomile is a bloom while Thyme is generally considered a herb. The oil itself in pure form is used in aromatherapy practices and each oil has a different properties and different practices depending on what it is composed of.

One of my favorite moments of this workshop was at the beginning when the speaker stated that nothing she says here is going to cure an ailment. Essential oils aren’t cures, they are not evaluated by the FDA, but they have been around and used in medical practices since the beginning of time. She wasn’t forcing anything and saying you MUST use this if you have digestive conditions or you MUST do this if you have anxiety, but she talked about what symptoms the oil is known for helping to ease and what she’s found by experience in her own life. The sense of smell is highly personal, a lot like IBD treatments/symptoms where one size doesn’t fit all. Someone may really believe that rose essential oil (known for easing grief) eases their anxiety and offers comfort. For you, rose might remind you of your grandma who passed away and make you more depressed. You have to find what works for you, what feels good for your lifestyle, and it might be different every day. Maybe today the smell of Lemon makes your home feel clean and refreshed and tomorrow Eucalyptus brings you the focus you need to write that blog post you’ve been putting off for weeks.

I love that approach. Find what gives you that spark you need today.

If you’re curious about some of the more popular oils and some that maybe you haven’t heard of, I’m sharing a few of my favorites that I jotted down in my notes from that day. Most of what she was saying she was reading out of one of the books she had brought to class, which I believe was from Essential Oils Natural Remedies: The Complete A-Z Reference of Essential Oils for Health and Healing. She also stated that she had many other resources and had been studying for over 20 years so was also sharing her own personal experiences.

Again, I’m not providing advice. I’m sharing what I learned some of these oils have been found to help with throughout history and by other individuals in aromatherapy. This may not be true for you and you should always consult a medical professional for advice. 

Marjoram: known for pain relief. Smells like Vick’s vapor rub to me, which I oddly find soothing.

Thyme: increases white blood cells. Good in combination with citrus oils for diffusing.

Bergamot: boosts happiness. Works well in areas that experience Seasonal Affective Depressive Disorder. It smells like an awesome sunshine blue sky day. Will probably get some of this for Michigan mid winters, when it’s grey and the sun hasn’t shown its face for weeks.

Cloves: this was my favorite scent of the day. It is known to provide comfort, is full of antioxidants to boost the immune system and is useful for treating depression and anxiety. This was the scent I chose to leave with, she put some drops in almond oil and told me to rub it on my neck hairline as I left class. I went grocery shopping after and got whiffs of the scent throughout the rest of my day. It honestly improved my mood each time I smelled it.

Myrr: known for healing wounds and was used for that purpose in ancient Greece. It’s a really thick, dark resin. It may assist in reducing inflammation in the digestive system.

Chamomile:reduces mood swings and eases PMS symptoms.

Lemon: uplifting, inspires positive thinking. Fresh and purifying.

Peppermint: cool, stimulating. Can aid head and muscle aches and promote a healthy digestive and respiratory system.

Lavender: stress reducing, comforting, relaxing.

If you’re looking to start bringing essential oils into you home, you could start with just a spray bottle from the dollar section at the grocery store and distilled water.  Throw some drops of your oil of choice in the bottle, add the water and then spritz around your home as you desire. Maybe keep it in the bathroom and spritz it on the shower curtain before you jump in, on the bathmat, fan, really wherever you want.

Then, if you find it’s really something you look forward to and want to invest in a diffuser or burner, you already know you like the scent and if it makes you feel better. If you want to use them with a carrier oil (like almond, coconut etc) and mix a few drops in then rub on you neck, temples, hands, whatever, BUT do your research first.  Some of those essential oils, like peppermint or cinnamon, are so strong they can actually burn you if you put them on your skin directly without a carrier. If you have animals in your home, make sure the oils you are using are pet friendly. While we are on the topic of research, I’m just going to go ahead and remind everyone that not everything you read on the internet is true. Use your brain, have an open mind but be cautious. Look at who is writing the article.  Again, I’m not an essential oil expert, I’m just sharing my experience. Think for yourself.

On my own essential oil adventure I made a yoga mat spray with tea tree and lavender and it’s awesome. I used tips from Adriene and the video is here. Do you use essential oils? How? Let me know! Find what smells good.

 

Resources: Aromatherapy. University of Maryland Medical Center. http://umm.edu/health/medical/altmed/treatment/aromatherapy

Hope in Plot Twists

Posted on by flareuphope

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 my MRI scan

Posted on by flareuphope

* warning* this is a long post
If you are looking for my tips on how to prepare for an MRI and don’t care about my experience scroll to the bottom. Thanks for reading!

I wanted to share my MRI experience last night in hopes to prevent others from going through what I went through. I was told that this would be a 30 to 45 minute scan, with no contrast but lots of breathing and holding my breath.

First off, let me say that I went into this with complete confidence. I’ve had an MRI on my back years ago and knew what it was like and was prepared for it. However, this turned out to be an entirely different experience.
I arrived at the hospital at 645 for my appointment at 7pm. I checked in, completed a form and sat down in the waiting room.
At 730 a tech came to get me and escorted me to a locker room. They were out of scrubs so she had me wait while she went to get some for me to change into. When she came back she showed me where to change and lock up my personal belongings and said she would be right back to escort me to the MRI.
Scrubs are so warm and cozy. Not. I was freezing.
Here I am modeling my new outfit.

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I paced the locker room that i had been left alone in while waiting, trying to stay calm and ease my anxiety. 30 minutes later another nurse came in to get me, not the original person. She acted surprised that I was still in there and asked if J* had been in there yet. She said she didn’t know where the original person was but that she would take me back even though I wasn’t her patient. This person (we shall call her S*) ended up being my angel that night, but at the time I was a bit frustrated for being forgotten about i had been at the hospital for over an hour at this point.  When we arrived back at the machine she asked me if I had been told how this would go. I said no, I had only been escorted to the locker room and told to wait there.
She had me sit on the bed that goes into the machine and handed me some earplugs. She got me a warm blanket and then the other nurse (j*) showed up and tosses a bag of fluids and contrast in my lap.
“Okay! Ready for your IV!?”
uh. What?
No one said anything about an IV.  The phone call prior to coming on to the MRI said I wasn’t having any contrast. I had no prior knowledge of this.
I felt my heart racing as I stared at the huge needle that had been dropped in my lap. My veins are poor and I had to stop drinking water at 2pm that day per the phone call for my scan. I knew I was dehydrated and would be a hard poke, and hadn’t prepared for it. You just don’t drop an IV bag and needle in a person’s lap without a warning. Especially me. Don’t do that to me with needles. I work hard to decrease my anxiety and it takes a lot of preparation, dropping a needle in my lap doesn’t help anything, especially right before I’m about to be stuffed in a small machine.

“Are you sure you have the right patient?” I asked. “I was told this would be a no contrast MRI,  just lots of breathing.”
“Nope,” she said without even checking. “Your orders changed and you’re essentially getting two MRI’s today.”
S* saw the sheer panic in my eyes and asked if I was okay. I stated that I’ve had some really terrible experiences with getting IVs before when I’m not prepared or hydrated enough and that this was a shock for me. I then went on to say I needed to be heat packed and needed a baby needle and they may need to contact the IV
J* interrupted and said she wished I would have told her this earlier so they could have worked on it already. (When would i have done this? When you forgot about me in the locker room?) She then said she would try a couple times and we would call the iv team if necessary.

Thank God S* took over and said she used to be an outpatient surgical tech and felt confident that she could get it on the first try. She asked J* to get a smaller needle, told me to lay down and breathe and try to relax.
She got it on first poke.
J* asked me why I was there, I explained that I have ulcerative colitis and the MRI is to check for bile duct cancer.
She asked when I went to the lab to treat my “colitis” and I replied it’s ulcerative colitis, not simply colitis, and I don’t go to the lab, I go to the infusion center and it takes a few hours for my medication.
She then shrugged, gave me ear plugs and had me lay down, strapped me to the table and put a brace like thing over my stomach. She said to stay as still as possible and said to listen to the prompts from the machine and that she would guide me through the whole time.
She left the room, and S gave me the panic button to push in case I had any problems. She put my arms above my head and a bolster under my legs and heard her leave the room as I  breathed deep and waited.  And waited. And waited.

And finally J came on the overhead and said the table is going to move, and in I went. I closed my eyes and took deep breaths.
The machine came on and told me to take a deep breath, let it out, take another deep breath and hold it. I held my breath while I counted, sometimes to 5, sometimes to thirty five until it told me to exhale. And it would make the sounds like the alarm and shake and beep. And I breathed. And this went on for what seemed like forever. My hands and toes were tingling and numb from being so cold, and I was started to get anxiety because I knew I had been in there a long time but had no concept of how much longer it would be.
J* came on the speaker and said I was doing great and they were going to start the contrast now, not much longer. I thought the contrast had already been in me. This must have been about an hour after we started. The contrast stung a bit as I felt it travel up and back down my arm again. I breathed, and tried really hard not to cry as I wondered why I had to go through this. I just kept thinking of my fiancé and going to California on our honeymoon and being somewhere warm and my family.
The machine had me hold my breath and breathe, hold my breath and breath for maybe 5-10 scans and then one scan lasted for maybe 10 minutes, no status update from the S* or anything. Finally it went silent. I lay there and counted to 100. Nothing happened. I said “hello? Can anyone hear me?” Nothing. Silence. My shoulders were aching, my feet were numb and my hands were tingling and I was starting to think they forgot me. My heart sped up and I tried to focus on remembering breathe. Finally she came on the machine and said one, maybe two more scans and we were done. Okay. I thought. Can’t be more than 5 minutes. I can do this. And closed my eyes again and breathed.

I heard the door open. I’m done!  I thought. I made it! And I looked up and backwards a to see S’s face. She said they entered the numbers in wrong and needed to redo the last 4 scans. (Wtf?!) She asked if I was okay and I said not really. I’m freezing and really uncomfortable and ready to get out. She felt my hands and said they were ice cold and got me a warm blanket to go over them and around my head. I asked her how much longer and she said about 15 more minutes. I breathed feeling the tears form and said okay.
I made it through the next 15 minutes dreaming of vacation and going through everything I am thankful for. And crying.
Next,  it was silent again for a few minutes I stretched, and waited thinking finally (again) it was over.
Then J* came in and said okay hun we have a few more to do, we can’t seem to get the machine right but you are doing just fine keep staying still, ok?
I was done. I had been in there for who knows how long at that point and this was the third time she said it would be one more time. I said nope. I’m done. They can use what they have at this point. 
So she left the room and talked to whoever and then the machine scooted me out and said she said well I guess it will be good enough. I was shaking through my whole body. S* came in with a blanket and wrapped me up. She then took out my IV and realized J* had taken away the cotton balls so there was blood dripping down my arm. S* explained to me what had happened during the scan and that I had been in there for almost 2 hours and was very strong. She said it was a very hard test, essentially two tests and I did great at staying still. She apologized for how long it took and that I wasn’t prepared for it and walked me to the locker room. It was 10 pm by the time I got to the locker to change my clothes and then had to wait another 20 minutes for the cd to be printed. I called my fiancé in tears, and drove home on the snowstorm.

If you read this whole thing, thank you. I wrote this in hopes that someone else preparing for an abdomen/bile duct MRI will know what they’re in for. So they will know it’s not a 45 minute scan, it’s about 2 hours. You will have an IV, you will have to hold your breath a lot and you should wear really warm fuzzy socks. Ask for extra blankets. You might not think you’ll need them when you get in there, but it only gets colder.  Don’t be afraid to hit the panic button if you need a break. Have someone there to take you home because even if you think it’s no big deal, the reality of it is you could benefit from the support.
And wake up in the morning feeling thankful. I woke up today thankful for my supportive,  loving fiancé who made me tacos and paleo tortillas and kept the warm and waiting for me to get home. I’m thankful for my health insurance that allows this test to happen. For my family. For the sun being out today. Let the experience remind you of what you have and what you are capable of. Don’t let how someone else treats you rob you of joy. You are more than a patient in a machine. You are a person,  and I bet you’re an amazing person. Remember that.

Hope in Paper Flowers

Posted on by flareuphope

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

Posted on by flareuphope

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!

Hope in the Internet

Posted on by flareuphope

When I was going through my first major flare and found support on social media, it was incredible. There were so many supportive, understanding and encouraging people checking in on me, sharing their experiences and relating to what I was going through. I gained so much strength from some amazing people and their ability to care about strangers in the same predicament they were in or had been before. I loved opening my twitter app and checking the ibdfamily hashtag, and looking for others who had my same diagnosis under ulcerative colitis or autoimmune disease on instagram. I have formed some great relationships with some of those people and they are all very dear to me. That may be why I get so upset about seeing a change in the ibd community out here in the social media sphere.

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Every single person I know with IBD has a different treatment plan. Every single person. Some might be on the same medication but one doesn’t eat gluten. Some may use stress relief practices to prevent flares along with biologics to keep inflammation at bay. Some might be on steroids and following an SCD diet. And the list goes on.
So, why am I seeing so many attacks on people for their choice of treatment? A treatment should be between that individual and their medical professional.  Who am I to judge their choices?

Disclaimer* I’m not referring to when someone tells you “you must use walnut oil and you will be cured.” Forcing a cure on someone that was not asked for is rude. Particularly when it’s absurd and false and maybe more harmful than good.*

What I am referring to, however, is the “you can’t sit with us,” vibe going on when someone shares their story. Oh, you’re using a combination of meds and diet to treat your disease? Well, this is firmly a diet treatment only ibd community. Find another table to eat lunch at.

Or.

You’re not taking any medication? How dare you.  Take down your post about having Crohn’s disease and go be alone.

Who are we helping when we exclude others from the community because they follow a different line of treatment? This disease is lonely enough as it is, and there’s so much good and bad information out there, attacking others does not help anything. It makes people scared to talk about what’s going on. It takes us steps back instead of forward. 

I’m not saying everyone is like this. I have some great ibd family members who support and encourage and make me and others laugh and smile and they’re great. This has just been weighing on my mind a lot the more this community grows and I’d hate to see it turn into a negative attacking environment after it was such a haven for me when I found it 2 years ago.
I like to hope that it won’t become that way and that we can put these treatment differences aside and fight this disease together. We’re all fighting against the same enemy,  doesn’t help anyone to turn against each other in a right or wrong battle on the Internet Ibd community when it comes to sharing experiences.
There’s no reason to become mean and attacking for one persons choice of treatment when they are just sharing their story. And there’s no reason to push a form of treatment on someone just because they say they have a certain ailment.  This used to be a place of support and connection in the lonely world of invisible illness, and my hope this week is that it can stay that way for others who are desperately searching for someone who understands what they are going through, like I was when I first came here.
Please be kind, remember everyone is fighting a battle of some sort.

Sparks of Hope

Posted on by flareuphope

It’s been 52 weeks since my first remicade infusion. I’m rarely rush to the bathroom anymore. The blood that used to show up every time I went has taken a hike. Bloating and gurgling still occur, but rarely. Mostly, and I feel like I should knock on wood and jump into my bed and hide under the covers as I say this, mostly I feel good.
I’m not cured. My life is no where near where it was before. My diet is very restricted. I don’t drink. I carry sanitizer everywhere and avoid sick people because my immune system is suppressed. Sometimes I feel like I’m waiting for the other shoe to drop.The remicade could decide to stop working at any time. I don’t know what will come next.
I’m tired a lot. I tire easily, especially at large social gatherings. It can take me days to recover from long weekends like this.  But the important thing is, I’m able to attend those gatherings. The important thing is, I may not have my life back in the way that it was before, but I have a life again.
This brings me to the reason for this blog post. I’ve spent a lot of time thinking about how I want to move forward with this blog. I’ve met some incredible individuals that I want to keep supporting. I want to keep a part of this community of fighters. I’m not, however, an IBD advocate. That role is currently filled by some superhero and ninjas and doctors and your every day patients and they are ROCKING it. I will happily retweet and comment and like their articles and will continue to refer people to their websites, but I’m not one of them. I don’t have the knowledge or time to research for accuracy. (I’m not sure these people have the time either but they somehow continue to find a way,  thank them for that!).  I don’t have the answers, but I will gladly point someone in the direction of someone who does, and cheer them on along the way.
What I am is learning to live with my disease. And I am so full of thankfulness and gratitude for this second chance at life. At my last meeting with my general practitioner, after looking at my labs from a year ago, I was told that I should have been dead. I. Should. Have. Been. Dead.
I’m not dead, clearly. I’m alive and fairly well and given a chance to really truly enjoy my life. I just turned 27. I’m learning to do a handstand away from a wall. I go for long walks. I read books. I watch sunrises and sunsets. I go to garage sales  with friends and host cookouts and am getting ready to be married in a year. I hold babies and laugh and cry tears of joy because I can.
And I want to spend this 27th year of life paying it forward. I’m so blessed and so grateful for this life and I want to bring this sense of joy to everyone I can. I know that I alone can’t cure IBD or any autoimmune disease. But if I can make someone else smile, and maybe they feel the need to pass it on, then I can do something. I can do something. Doing something keeps me hopeful that it will lead to something greater.
So, the next year I will be focusing on a specific “hopespark” or random act of kindness each week for the next year. Follow on Instagram and twitter #52weeksofsparkinghope  and I’ll be documenting it here weekly. Stay tuned for next week and see what I’ve been up to!

Hope Warrior-Sarah

Posted on by flareuphope

Hi folks.  Can you believe it’s April? Thank the Lord tax season is about to be over and my work schedule will calm down a bit.  Sorry I haven’t been posting much lately. Unfortunately,  my real job has priority right now as it pays for the superwoman infusions I get every 8 weeks that keep me standing. Please forgive me for my absence, and welcome April’s Hope Warrior.
If you haven’t had a chance to connect with Sarah Choueiry of the Crohn’s journey foundation, you’re a fool. Jk. But really. She’s amazing and has such an awesome energy. Links to her social media accounts are below. Make sure to give her a follow and share some love and encouragement.

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Hi Sara! Thanks for sharing your story with us.

What type of chronic illness/autoimmune disease (s) do you live with?

​I live with an Inflammatory Bowel Disease called Crohn’s disease. ​

When was your diagnosis? How did you cope?

​I was diagnosed at ​14, struggling with symptoms since I was 12. I remember it took my mom threatening my regular doctor with a lawsuit if he did not send me to a specialist. My gen doctor was saying things initially that implied what was happening was in my head or part of becoming a teenager. I remember the day I stepped into the GI’s office, she looked at me and read my symptoms and said “you either have Crohn’s disease or ulcerative colitis, we need to have a colonoscopy.” I also remember that first colonoscopy because they put me in twilight. Let’s just say it scarred my memory!
When I was younger I did not cope, my parents did. They tried to alter my food to a soft, low residue (as recommended by the GI – aka white bread, white pasta, white everything ) and encourage me to take my pills without hounding me about it. I remember multiple trips a month to the emergency room and wishing that I did not always have to go to the bathroom every place I went. Besides that my memory of Crohn’s at the time I was diagnosed was limited to that.

What medications/treatments/surgeries/lifestyle changes have you gone through to manage your disease symptoms?

​I actually just had my first (and last) surgery (Feb 3) to remove what was supposed to be 10 cm of my small intestines, but actually ended up being 45 cm of my terminal ilium and part of my colon. Based on what the surgeon said, I no longer have any Crohn’s in my body! I hope not, after that surgery, was not easy for me.
Prior to that I switched GI’s about a year ago and so grateful I did. My new GI utilizes alternative medicine in her practice, from herbal medications to aid with calming the body to help reduce adrenal fatigue, creating teas just for my bodies needs at that time and making me tinctures just for my body.  ​She looks at the whole body and not just the symptoms. As for treatment, I was on humira in the beginning of 2013 and stopped some time in the fall because it did not appear to work anymore. I was then placed on entecort in the winter (2013), until surgery in Feb. I also did a couple rounds of Xifaxin while on the intro to Gaps diet and I felt amazing. The purpose of doing that was to help lower the collection of bad bacteria in my gut (SIBO = Small intestinal bacteria overgrowth), which I am convinced over 80% of people with IBD struggle with. I also altered my diet this past year and have been doing a variation of AIP with SCD and that has reduced the amount of discomfort and bloating I used to experience after meals immensely. I try to work on mindfulness every day through daily meditation, daily gratitude and yoga 3-5 days a week. I try to get outdoors as much as possible. Overall, I just try have fun in life and never forget the importance of socializing and being in my community of those I love. These are all the things I work on a daily basis and not easy to do, but worth it. (PS: I am horrible at grammar so forgive me 🙂 )

If you could tell yourself one thing looking back on your diagnosis, what would it be?

​I wish I would have told myself not to blindly listen to the doctor and explored diet. As a teen I was social, i worked out and I had fun BUT my diet was not the best. What I eat now is a total 180 from what I ate back then. I hate that the GI doctor told me that diet does nothing to help IBD. Just so disappointing. ​ ​Also that we were not encouraged to do things that helped reduce inflammation. ​Just a bummer and upsets me a lot at times. I do not believe diet is a cure in no means BUT it is a great way to help reduce inflammation and reduce your symptoms. I mean how can food we put in our body NOT impact how we feel!?

What do you do to relieve stress?

​I work on relieving stress daily. Not sure why but I tend to run more anxious. I think a lot of people with IBD do. Maybe from all the trauma we have been through?​ ​So this is something I try to focus on daily. I like to go on walks, yoga, spend time with family, talk to my close girlfriends, write in my journal, cook, go to the farmers market, sit at the beach and meditate. ​I would say those are my go to’s! So important to find what relieves your stress and do it as often as possible.

What inspires you?

​Hmm I would say the vision of a healthy me inspires me. I feel like I have opened my eyes the past couple years to a different world out there in terms of how to find happiness and health in my life and I have been working hard to get there. What inspires me are those who look at life with hope, love and determination, which makes up most of the people in my life. Another thing that inspires me are my close friends, parents and husband because they are so amazing, strong and beautiful inside and out, and to have them in my life inspires me to be the best person I can be.

Who do you turn to for hope or inspiration?

I​ turn to my IBD family I have created when I need hope or inspiration when it comes ​feeling discouraged about having IBD. It is comforting to have people who can relate to you, and just get you and say the right things to pick you up because they have been there!

Do you have a saying or quote or song that you turn to when you need to be uplifted?

​There are two things I do that help uplift me. First, non stop dance parties in my room while playing my hipster bbq radio station on pandora.
In terms of quotes, this helps me the most and I read it when I feel my life is out of my control and I need balance:
God grant me the serenity to accept things I cannot change,
The courage to change the things I can,
and the wisdom to know the difference. ​
What keeps you hopeful?

​My future, healthy self. ​

Rain drops on roses and whiskers on kittens. ..what are some of your favorite things when you are feeling bad?

​I would say it is all listed above. What I do when stressed and what I do to make me happy are all things I would call my coping mechanisms. The biggest one is to find daily gratitude on the shittest day. Last, be patient, compassionate and kind to yourself. Listen to how you speak to yourself in your head and question if that is what you would say to your daughter or mother if they had IBD. If not, then change that inner dialogue.

Social media accounts /website?

​www.thecrohnsjourneyfoundation.org
http://instagram.com/crohnsjourney/
https://twitter.com/SarahChoueiry
http://www.facebook.com/MyJourneyWithCrohns

Hope warrior- The Wolf and Me

Posted on by flareuphope

Hi everyone!  Happy Warrior Wednesday. It’s invisible illness month. I wanted to bring attention to the lovely Cass, the person behind The Wolf and Me. If anyone knows what it’s like to have an invisible illness, it’s her. She battles each one with a fierce attitude, and is always sharing encouragement with anyone else fighting the same fight. Send some love her way and check out her blog, instagram or twitter! Happy March, hoping spring arrives quickly if you’re dealing with any of this crazy winter like we have been. Now read on to find out more about The Wolf and Me. She has some great insight on coping with a chronic illness.

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1. I have a lovely (sarcasm) variety of chronic illnesses 11 in total! My main culprits of hard times and pain are SLE Lupus, chronic fatigue syndrome, fibromyalgia and connective tissue disease…The last is still under investigation. I have other things like Raynauds syndrome too but it’s not a naughty as the others.

2. My journey into the chronic illness world began when I was 20 although I’m sure it began at 15 however I was undiagnosed then! At 20 I became ill at university with the flu that seemingly never ended and it was here that I was diagnosed with CFS and fibromyalgia. Since then the other diagnosis have come in almost one a year.

Coping with diagnosis is tough but for me it was coping with what diagnosis meant that was tough more than coping with hearing what is wrong. Especially so young when I wanted to be going out and having fun but ended up staying in all the time sleeping….although I watched some great movies during this period.

3. Treatment for me is complicated due to the amount of different illnesses in play. My lupus is controlled through chemo currently methotrexate with cytoxan coming in and out of play….This treatment reduces my immune systems white blood cells and thus stops it focusing on destroying me. I am also on Hydroxy chloroquine for this and folic acid to help with the chemo.

For pain I take 900mg of Gabapentin a day and codeine. This helps with fibro and lupus pain.

For me though, the best thing I did was get creative again. I now paint and draw at times of extreme pain. I find that distracting myself this way keeps me active and positive. Along with this I have changed my diet cutting out dairy and introducing items like pineapple that are natural anti-inflamtories.

4. My diseases are triggered by many things, some I can control and some I can’t.

My biggest triggers are illness and stress. I can’t do much about getting sick especially when on chemo but the stress I’ve worked very hard to understand and try to control. I now know when I’m under too much stress and can pull back to find a happier place but this has left me unable to do certain things such as too much traveling.

Other triggers are certain foods like rice that cause me pain, lack of rest and the cold weather!

5.Advice for newly diagnosed : There wouldn’t be just one thing there would be an entire book full of things! But to pick one thing it would be “Don’t panic”. By this I mean don’t start Googling the diagnosis, don’t rush through the millions of questions, don’t lose sleep over it. Take it one step at a time and know that everything will be okay.

6. I have numerous quotes and songs I go to at times of trouble. I love to read certain books especially mainly any book with an internal struggle within it such as Lord of the Rings or even the Hunger Games books. I also love my vinyl collection and when I’m really struggling I turn to Fleetwood Mac as I find their songs to be the kind that reflect many emotions so there is always one that will lift you up.

7. Being hopeful really is a constant state of mind that I have worked hard on over the years. I find that by saying to myself the things I’ve achieved throughout the day I can be hopeful for tomorrow.

It’s very easy to focus on the things we’ve lost or the things we cannot do anymore, like my beloved swimming. So I find by focusing my energy on the things I can do I can be hopeful that tomorrow will be another day full of achievements.

8. To cope with stress I always head straight to arts and crafts. I find that many of them have meditative qualities, even doodling can be therapeutic.

Along with this I also find fresh air helps immensly. When I can I will go for a walk but that’s not always possible. On bad days just sitting by an open window and practising deep breathing really helps me to calm down.

9. Ohhhhhh I have a sweet tooth! When I feel really low I turn to carrot cake it is my ultimate treat! I don’t deny myself treats for fear of putting on weight etc. I think everyone deserves to have something they love every now and again if it’s going to bring a smile to their face!

10. What inspires you? This is a tough question as for me I believe hope comes from within yourself. I am constantly inspired by all of my friends and family everyday in reality. My partner for example is so head strong and grounded that this inspires me to remain in the now.

What inspires me the most are people who are positive in the face of adversity. Sometimes we become so involved on being ill that we forget that everyone on the planet is dealing with something we don’t know about or maybe understand. If you can get up and smile everyday then you are inspirational.

11. My picture would be a simple beach. The water would be clear and the sun would be shining. There would be calm colours all around me and tall trees in the distance with bird song. It would be a place I could sit and read a good book, feel no pain and maybe just watch the waves roll in and out.

12. My website all about chronic illness and positivity can be found at
http://thewolfandme.com

If you want to follow me then come say hi on instagram @thewolfandme or
on Facebook
https://m.facebook.com/pages/The-Wolf-and-Me/253558044825384

Lastly I just want everyone to know that time is a wonderful thing and however hard it maybe now it does get easier! Love to all