hope

30 Days of Gratitude Challenge

Posted on by flareuphope

I’ve been utterly exhausted and so frustrated about the amount of negativity and attacking I’ve seen on social media lately. I’ve been lurking in the background swiping through posts upon posts of complaints and negativity and worries and fears. This toxic thought pattern has drained part of my spirit and makes me question why I came out to start this blog and find support out here in the first place.

I’m starting a 30 day gratitude challenge for myself. I need this. I need to reconnect with why I blog about how having a chronic illness impacts my life and my mental health.  I need to get back to gratitude for being alive, for having the gift of this life. I need to determine if I want to continue this. Be the change, right?. I’m tired of the negativity, so I’m not going to contribute to it.

Do you feel drained? Maybe you need this too?  Feel free to join me, I’ll be posting daily throughout November in honor of the month of Thanksgiving- and just reminding myself to give thanks, and to find the light in the darkness.

Here are the dates and suggested writing topics I created for the month to spark a gratitude practice. Feel free to screenshot, join, share and follow along on instagram and twitter, I’m @flareuphope pretty much everywhere. Let me know what you’re thinking of his month and tag me in your posts so I can see.


Chronic illness isn’t fun, but there’s always something to be grateful for. Stay tuned for my first post tonight!

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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!

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 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.

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- 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

Hope in Letting Go

Posted on by flareuphope

Disclaimer: This gets a little personal for me. I’m not looking for pity, and I know that things could always be much worse. I’m not trying to get sympathy. I just want to share the reality of what life is like with a chronic illness.Depression is in my family, so I’m always very aware of my mental health state, and I knew that I was slipping down that slope and had to make a change. This is my way of dealing with how this disease has changed my life. I’m sharing it because I know there are others who struggle with it and I hope it can offer ways of coping for them. 

Did you know that grieving over a chronic illness is a real thing?

I didn’t. I have experienced all of the emotions of grief, but I didn’t realize that it was actually a real thing that you go through with an autoimmune disease. My GI doctor seemed to shrug it off when I told her about my concerns. I was struggling with this so much over the past few weeks, and so relieved to find thousands of results on Google under “grieving a chronic illness.”

I was 24 when I was diagnosed with Ulcerative Colitis, that was just about 2 years ago. I did not know anyone with a chronic illness aside from one of my best friends who had lupus, and she didn’t really talk about how much it affected her. I knew nothing about how much my life was going to changed, and my doctor never mentioned anything to expect. Our only talks were about treatments and how many bowel movements I was having. No one talked about the emotional part of IBD. And it’s a huge part. I wish someone would have talked about it.

I’m talking about it today.

When I got my initial diagnosis, I was actually relieved. That was the first emotion I felt. I even remember smiling and saying “oh, okay.” I didn’t have cancer. It wasn’t until I got home and later that night looked up on the internet what the disease ulcerative colitis actually was that I realized what I had.  And then I cried hysterically. Life would never be the same. Just like that.

There are many parts and pieces that are lost or changed when your life with a chronic illness begins. Working is hard for some, and the type of job you do might change. You might be absent from work on some days when you never used to call in before, or find that you aren’t able to keep up with those responsibilities that you used to handle with ease.

 Relationships that aren’t built to handle this type of challenge may become strained as some do not understand what you are going through. Some relationships may dissolve completely (you don’t need those people anyway). 

Grief can come at you in all forms as the disease changes you mentally, physically, spiritually and fully. With my IBD, every single day brings a different opportunity, and sometimes a different barrier. My identity of who I was pre IBD is gone. I still have bits and pieces, but it came at such a transitional part in my life where I was already trying to define myself, I absolutely had no idea who i was anymore or what I was going to be. All I knew was that I was sick, and it hurt, and I lost all sense of what life was going to be.

Depression is a slippery slope for many people with autoimmune diseases. For some, the grief cycle is continuous. Each new loss the disease brings can trigger what happened in the past. For others, seeing some patients thrive and be healthy can trigger jealousy and longing for the past healthy days. We may be truly happy for the person who is having the time of their life, but it may make us yearn for the days when we were healthy and naive. 

Sometimes, we are so ill, it is impossible for us to grieve what losses are occurring. It’s important that we set aside time to mourn what has been stolen, whether that be your pre IBD identity, your colon, your relationships, your finances, what ever it is. It’s SO important to go through that cycle, deal with the emotions, and let it go. Otherwise, you’re stuck. At least, that’s how I’ve been feeling.

When I had my diagnosis, and knew what it was through my own research, I felt sad, but I didn’t really know how much the disease was going to affect my life. It was hard, but I was getting through it and to be honest, life hadn’t really changed all that much. Fast forward a year, and I’m in the hospital getting a blood transfusion and I’m the sickest person the nurse has ever seen, and she had been a nurse for over 20 years. 

I was too sick to grieve. I was scared. I wanted my life back. I was mad. I was frustrated. But I was hopeful. And I eventually got out and was able to start slowly healing and getting some strength back. I didn’t really realize that I had said goodbye to pre-IBD me, and she wasn’t coming back.  Pre-IBD me is a memory. She is in the past. I have bits and pieces of her in my heart, but I’m not the same. So, who am I? I’ve been having to relearn a lot of things. 

Fast forward to now.

 I went on vacation this year, somehow expecting to be vacationing from my disease. Earth to Jacklyn, you can’t just send your disease to outer-space for a couple weeks and bring it back when you get home.

That realization triggered a lot of emotions that I hadn’t dealt with previously. I have to take this disease with me wherever I go from. now. on. Life as I knew it for 24 years is not coming back. I can hope and wish and pray, but it’s just not. For the rest of my life, until they find a cure, I will carry this disease with me.

What I do have, however, is a great life. I just couldn’t see it recently with all the emotional baggage falling over my eyes.

I decided this weekend that it was time to seriously grieve my losses, and then let them go. I am so tired of being triggered into a dark cloud of emotion every single time this disease defeats me. I have a very blessed life, and I want to be able to enjoy it with fresh eyes and stop yearning for the way it was previously. I did a lot of research and spoke with folks in my IBD community and found that many of them are also in this cycle of grief, being set off with different triggers as the disease changes and you again have to adapt and change what life was.

Now, before you read on, I want to make sure you know that I am aware this cannot be fixed in a weekend. But I want to share with you the beginning of my letting go (que the music), and I think I’m off to a good start.

My fiance is out-of-town this weekend, so I had the house to myself and was free to mourn my previous life. I did a lot of research, and decided on what strategies I was going to take to start moving on with my IBD life. 

I decided to have a funeral for my old life. 

 I started by writing a really long letter about all of the great things I did pre diagnosis. I wrote in my journal for hours about what I loved about that life. And then I said goodbye to it. I folded up the letter and put it away. I cried. I took a lot of deep breaths and focused as much as I could on letting go of that life.

 And then I wrote another letter. This time it was acknowledging all the things I was grateful for in my life right now.

I made my mantra Have presence in the present. Let it Go. And with each breath during my meditation I recited it. I physically practiced it during my yoga session. I wrote it down on a sticky note and stuck it on my door frame. I lit Rose incense after learning that the scent helps release pent-up emotions. But mostly, I spent the weekend doing a ton of things I enjoyed doing. I made lists of things I was happy about. Things I dream about. I played music that made me happy. Music that made me sad. I put on my favorite shirt. I laughed. I rearranged the furniture. I got rid of clothes that no longer fit. I put together a box of things to get rid of. I counted my blessings. I prayed. I watched a couple of sermons. I practiced putting my expectations in a box so I didn’t have to dwell on them.

 And now I’m here. Telling you about it. And I’m going to keep practicing letting go every single day until this longing for my old life moves out. I’m cleaning out what was to make room for what can be. And I know that there can be a lot of good, even with IBD. I truly think that I won’t be able to see the good in the present if I don’t let go of what once was and look to what is good now. 

If you’re looking to make the move for yourself, and have some time and space to do it, there are some links at the end of this post to some of the research that I found to be most helpful. There’s a lot more out there, so please find what fits for you and make sure to consult your support group if you don’t feel like you can get through this yourself. I’m not a doctor or a counselor, but I’m here to listen if you need it.

I’m just trying to find what works best for me in living with this disease, and my hope is that you can too.

http://www.chronicpainaustralia.org.au/files/Booklet%202%20-%20Grief%20and%20Loss.pdf

http://www.socialworktoday.com/archive/070714p18.shtml

http://tinybuddha.com/blog/40-ways-to-let-go-and-feel-less-pain/

Hope In Vacations

Posted on by flareuphope

I can’t say I’m entirely thrilled to be back home in -23 degree mornings (yes, that is a negative 23 temperature), but man, I missed the privacy of my own bathroom and only having to share it with one other person. Little blessings.

Vacation was different this year. This was my first non-sick/IBD related day off from work in over a year and a half. You could say I was looking forward to it. I wasn’t even realizing that this was my first vacation with my IBD. The thought did not even cross my mind at all. I was thinking of sun, and sand and not having to think about anything else but just relaxing and doing whatever I wanted. I still had the mentality that vacation was going to be about lounging and laughing and eating and drinking and just letting go.

At my infusion before we left for vacation.
At my infusion before we left for vacation.

My infusion was the Friday before we left, and we were driving to avoid the chance of me getting sick with my immunities being so low right after the remicade (we both came back home with colds anyway) and my fiance drove the whole trip. I was nauseated a couple of times and had some cold sweats but mostly got through okay. Absolutely no urgency. We stayed overnight in Georgia so I could get a goods night sleep and be in full vacation mode when we arrived on Sunday. I think part of me was thinking that not only do I have time away from work and obligations, but part of me kind of thought I was going to be on vacation from this disease as well.I was so ready for Sunday and to be feeling better. As we were driving in to FL and a few miles away from the house, we had the windows down and the sunshine filtering in and it all felt wonderful. I closed my eyes and felt the wind come through the window onto my face and just smiled, feeling so grateful that I was well enough to be there.

The first couple of days were great. We went fishing and relaxed, went out to the everglades and just did whatever we wanted. I was still seeing some blood, but I wasn’t in any pain or too concerned, just waiting for the remicade to do what it needed to and watching what I ate to try to avoid anything I knew triggered a flareup before. I smuggled my own Ketchup in my purse. I don’t drink anymore because it triggers inflammation for me, but I was able to find some iced coffee everywhere and was a happy girl.

Every time my fiance and I have previously been to Florida on vacation, we usually spend a night at an oyster bar filling up on ketchup and horseradish and crackers and beer. It’s one of my favorite memories on our first vacation together, sitting on the patio with a corona and oysters, laughing and carrying on without a care in the world.
We went out to one oyster bar on our 4th or 5th night there, and I ended up breaking down. Reading over the menu, there was a large warning specific to “persons with autoimmune diseases” that eating the raw oysters may cause severe illness or even death.
Oh.
I never thought I would cry over oysters. Or in public. At a restaurant of all places. It was like a scene from a stupid cheesy movie when the waitress comes over to ask for your order an you’re trying to pretend like somethings in your eye. Sometimes I just get so tired of this disease surprising me. And on vacation?! Vacation is where you’re supposed to leave all your problems behind, right?
As I sat quietly through dinner of french fries and my smuggled Ketchup I tried really hard not to let the tears drop down my face. I just wanted a vacation. A vacation like I remembered. Like I used to have.
When we left the restaurant, I cried for a little while though I really didn’t want to. And then I asked my fiance to help me redefine vacation. If vacation wasn’t going to be what it used to be, I needed to change the way I thought about it.
I can’t take a vacation from my disease. It’s part of me, and I can’t neglect to take precautions, take medications, and take care of myself. Even for just a little while. I can, however, go to the beach. I can take walks to wherever. I can put my toes in the water. I can walk on the pier. I can drink coffee. All kinds of coffee. And smoothies. I can do yoga. On the beach. I can go visit old trees, and get close to alligators. I can eat strawberries fresh off the farm. I can watch the sunset. I can make the most of what I’ve been given, and not focus on what I’m unable to do.

This vacation helped me realize that many things are still going to need to be redefined in my life in the future. I’m still mournful there are things I used to be able to do but choose not to do now because they make my quality of life lower due to the disease I have. It’s not easy to give up some of my favorite things. The letting go allows something else to be discovered, however, and I know that there’s more out there for me to find. I’m grateful that I was given the opportunity to try some of these things once before, and that I have memories of those moments to call on and relive when I want to. This vacation reminded me of what a gift my life is, and what a gift each moment is. I really never know if there will be a next time. Neither do you. Hopefully, I can remember that more often.

Here I am, focusing on what I can do: a bridge in front of a tree that is over 150 years old.
Here I am, focusing on what I can do: a bridge in front of a tree that is over 150 years old.

Sparking Hope Again

Posted on by flareuphope

I want to apologize to you all for not posting the past couple of weeks. I didn’t want to do a post because I wasn’t feeling true or all that hopeful, and I didn’t want to force it.
When it rains, it pours and usually for someone with an autoimmune disease,  it flares.
I had a family emergency during week 6, and week 7 started experiencing some nasty symptoms that hadn’t appeared since May. When I saw the blood, I immediately started sobbing. No, no, no, no, no. This isn’t happening again. I sat on the bathroom floor and cried while my dog licked the tears falling from my face. I was crying so hard my fiance thought I was laughing. I came out of the bathroom and he saw my face and jumped up. I couldn’t speak enough to tell him what was wrong between crying so hard,so he just held me for a while until I could get it out.
It’s back.
I wasn’t prepared for that type of reaction from myself. I can’t remember the last time I cried that hard. the memories of being in the hospital came flooding back.  All the pokes, the unanswered questions, the pain, the steroids, the side effects. I wasn’t ready to go through all that trial and error again. To miss out on the world again.

While I blabbered  on about everything going through my head my fiancé reminded me to stop and just take it one step at a time. My next infusion was in 5 days. Maybe it’s just triggered from the stress of the previous week and being so close to refill time. I wasn’t in a lot of pain. No urgency. Just blood. Terrifying, but just blood.

So, I’m taking it day by day. I’m praying. A lot. I got my remicade infusion on Friday, and the blood has diminished,  though not completely gone yet. But I’m good. I’m taking time away, and I’m taking care of myself. I’m getting my hope back. Spark by spark.
For the next two weeks I have nothing planned but sunshine and relaxation. No work. No negativitiy. No anxious thoughts are allowed. Only love, and gratitude, and laughter are welcome here.
I’m going to be writing down three grateful moments everyday, to keep myself accountable. I’ll post them for you on Sunday. I need to hit the refresh button over here so I can keep bringing the hope to all of you. I’ll be checking in on twitter and instagram,if you need anything at all. Thanks for your support. You all mean the world to me.