Hope in my MRI scan

* 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.

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Hope in Paper Flowers

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

It’s hard.

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

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

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

  Whatever it is, know that it is enough.

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

Hope in the mental and physical

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

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

Hope in the Internet

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.

Hope in Letting Go

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

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.

Hope Warrior-Michelle

February is a good month for heart opening. If you celebrate Valentine’s Day or not, take a moment to say I love you to those you care about. Send a card, make a phone call, share a smile. Bring a little light into the world.

This month’s featured Hope Warrior is Michelle Eberwein from hopeinbracelets.com

She’s pretty incredible. And she makes some beautiful bracelets for all sorts of causes to bring awareness to those conditions. Make sure to check out the bracelets using the link above, and share it with someone you know. This is one of my favorite bracelets she designed, called Hope (go figure that I like it). Can’t wait to order it for myself soon!

hope bracelet

Let’s get to know a little about Michelle.

 

 

Hope Warrior: Alyssa

Hope Warrior-@chronicallyliving

Folks, I’d like you to meet Ellie. She’s a brave young girl who is facing any autoimmune diseases that keep her at home. She is currently unable to leave the house for long periods of time, even a trip to the doctor seems like a road trip across the country. But she doesn’t let this stop her from keeping a positive attitude and raising awareness for her diseases and many others.

Please read through Ellie’s story.

You can find her on instagram @chronicallyliving.

What type of chronic illness are you battling? I have Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Postural Orthostatic Tachycardia Syndrome (POTS) which is a form of Dsyautonomia and Irritable Bowel Sydrome(IBS). Together they produce huge variety of symptoms, some of the main being; fatigue that isn’t relieved by sleep or rest, chronic pain (joint and muscle, affecting all parts of the body), brain fog/cognitive impairment, nausea and other stomach problems, sleeping problems, constant sore throat and glands, feeling dizzy or faint, and many more.
 
What is the number one thing you’ve learned about yourself since your diagnosis?
Probably that I am able to deal with a lot more than I thought I could; I never expected to be in a situation like this but when you’re put in that situation you just learn to deal with it. 
When were you diagnosed?
I was diagnosed with ME/CFS in august of this year, and then with POTS and IBS in November. I have been suffering with symptoms since the very start of the year. 
What are your current medications/what lifestyle changes have you made to treat your illness?
In terms of medication: amitriptyline for sleep, pain and mood (currently reducing my dose), melatonin for sleep, domperidone for nausea (just about to switch to a new nausea med), fybogel for digestive problems, mebeverine for stomach cramps.tramadol and ibuprofen for pain,
Lifestyle changes: I’m mostly gluten free to help with my IBS, I try and follow a thing called pacing to make sure I don’t overdo my activity, and I take plenty of rest breaks during the day(Where i do nothing but lie there and listen to relaxing music)
How do you keep your mental health intact while dealing with the symptoms/changes of the disease?
I am on low dose antidepressant which possibly helps a bit, but mostly I try and focus on things I can enjoy and the little achievments every day. I’m also helped by being surrounded by loving, caring people who believe me and do their best to understand what I’m going through.
What do you struggle with most? What are you doing to overcome it?
I struggle the most with my fatigue, as it leaves me bedbound and unable to walk further than to my bathroom, and I sometimes can’t even manage that. To overcome it, I’m just having to do my best to keep my activity to a minimum to avid any further dips in energy level, and I hope that eventually I will be able to begin to build up my daily activity.
Any advice for newly diagnosed?
Try and keep your activity to a minimum-do half of what you are able to do! If you overdo it, your illness will only get worse and worse. And try and remember it isn’t necessarily a life sentence : people with ME, POTS and IBS do sometimes recover, and the majority of them experience periods of improvements, especially if you are young the chances of recovering are fairly good.
Rules to live by?
Do not overdo your activity. Love yourself and respect your limits. Don’t let other people tell you what you should and shouldn’t do. Don’t let people make you feel guilty for being ill. Always look for something positive in every day.
What does your perfect day look like?
At the moment, since I can’t leave the house I’d say a movie day with a few friends and maybe a bit of pampering time with face masks etc! 
Go to Snack when flaring:Probably a piece of dark chocolate  (I like 85%) because it doesn’t make me feel sick.
Favorite Author: Probably John Green! But I can’t read currently due to my illness.
Activity that lifts your spirits: Colouring!
Your philosophy/mantra that you’d like others to know about you: Make the best out of a bad situation.
What would you do with a million dollars? Give some to charity, some to my parents, buy myself loads of pyjamas!
Who do you admire? Everyone I see fighting their illnesses with such strength!
What is your mission? To raise awareness for invisible illnesses, especially ME/CFS.
Social media accounts? @chronicallyliving (instagram)
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Remission

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

#purpleproject

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

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

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

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