Will Essential Oils Cure IBD?

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 HealingShe 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

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Hope in Plot Twists

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

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

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

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

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

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

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

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

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

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

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

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

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Hope in 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.

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 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.

Sparking Hope Again

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.

Hope in My Dad

me and dad

Everyone tells me I look like my mom but have the persona of my father. And I love that. My love of books and words comes from my dad. He showed me how reading can create a new world for yourself within different pages, and to look deeper into the illustrations of my picture books to find hidden things that the artist put there that you might not notice on first glance. I still find myself looking deeper when I go through my old children’s stories, looking for what the little piggies have in their hands, or what King Bedgood has in his tub (OH who knows what to do?!). And I love looking deeper into the words, and deeper into things that happen into my life. There’s always a hidden message, or a message that you might not see clearly if you aren’t looking in the right place.

When I was in the hospital, my dad was there almost every day, sitting in the uncomfortable chair, trying to work, trying to keep it together, praying, and trying to answer questions that were neither of us knew the answer to.  Why was this happening? Our family doesn’t have any history of major illnesses. Sure, life may have been a bit challenging at times, actually I’d been through a lot growing up. But being sick, really sick, wasn’t something we went through. Why was this happening to me? Why couldn’t we fix it? What’s the hidden message?

I’m still not sure what the message is. My hope is that my story and my journey through this disease will lead me on a path that will allow me to help and inspire other people to enjoy their lives and live with joy and thankfulness. To show that there is hope and beauty in the breakdown. Maybe it was to bring me and my family closer to God. These just aren’t questions that have obvious answers. And we might not find out why for a long time, if ever.

Anyway, when I was in the hospital on my birthday, after my blood transfusion and when we were waiting to find out what happens next, my dad wrote a post for me for World IBD Day because I wasn’t feeling up for it that day. I want to share it with you now though. Happy Father’s Day Dad! You’re the best. I’m proud to be your daughter.

Today, May 19, I celebrate World IBD day. Maybe celebrate is not the correct word for those afflicted, maybe honor is a more appropriate word selection. It has only been in the last couple of months that I became aware of World IBD day being on May 19th, a date that for the past 26 years I had celebrated as the birth date of my daughter. Today we sit together in the hospital. She has been here since Friday having been readmitted for Prednisone IV treatment in an attempt to put her Ulcerative Colitis into a manageable state. This is our second trip here in the last two weeks. The first weekend was unsuccessful. Her response to oral prednisone had not been what we had hoped either, so they admitted her for IV to see if that would work better. The first trip resulted in the discovery of giardia, a nasty ass intestinal parasite, which required additional medication in the form of flagyl, an equally nasty ass antibiotic originally designed to make alcoholics violently ill should they choose to drink again.

 

Her treatment plans seem to change almost daily. Right now we are on course for remicade after she is released in the morning. Remicade had been the plan as of last Thursday afternoon, but then twenty minutes later the doctor called and said she wanted her back in the hospital under the guise that the giardia may have been inhibiting the pred from working the way it should. This morning they tell us that the real purpose was just to get her stable enough to be able to handle the remicade. Her initial approval for remciade was denied due to an “inconclusive TB test”, which came as a surprise as she had not been given a TB test. We later found out that they did it from her blood. An additional, traditional test was done over this weekend and it also came back as inconclusive due to the fact that her body is unable to establish a baseline due to the improper behavior of her immune system.

 

This shit is no joke. While we sit here and I write this she is delivered flowers from co-workers. The flowers are purple roses and I doubt very much the senders know of the significance of purple to the IBD community. I know I didn’t.

 

So anyway, she has been in the front car of this rollercoaster train ride of treatment plans – remicade/pred iv/imuran etc. , blah blah blah, and I have been pulled along in the back car. I asked her if she was going to post today for World IBD day and she wasn’t sure, so I asked if she wanted me to do a guest post. Maybe offer a different perspective in hopes of spreading more awareness in honor of today, and in celebration of her and her birthday. Everything I have written above seems a bit scattered so maybe its better to leave you with the following that I wrote this morning.

 

My daughter is sick

she has a chronic disease

and today is her birthday

For her birthday she is getting

Remicade and I want to

sing its” praises like Eddie

Murphy does for lemonade

but it is too soon

she may not even get it

her doctor has changed

course many times before

and then there’s the issue

with TB and the inane

practice of having to

be dismissed and re-admitted

to receive treatment

something you never see on

House or Gray’s Anatomy

Yesterday she was given new

blood and has spent a third

of her bir-month in the hospital

and most of the rest bedridden

UC – Ulcerative Colitis

say it out loud because it is

real and real scary

I have moments when I am

alone and fighting

tears every day

but I am not

alone nor is she

this is our disease

not just her

and I and her

mother and her

family and her

friends old and

newly discovered

from sharing their stories

of flare ups and hope

pain loss inspiration purpose

trust faith courage

all the variations of strength

helping one another while

the medicine tries to catch up

there is no cure

her body

attacks itself

bleeding is constant when she moves

her bowels enflamed

her diet strictly limited

to reduce potential

causes of flare ups

which remain uncertain

every morning I am guilty

of having regular and

normal shit

which I take for granted

or used to

catching myself in denial

rationalizing, searching

for answers whose

only question is why

WE don’t get sick

WE come from superior genes

is this karmic retaliation

is this God’s way

to bring me closer

to bring us closer

I’ve taken to more prayer

but fear I am not

very good at it

my mother is expert level

praying the Novena which seems

like a chain letter

or the Pope’s facebook post

but still I want to try it

try anything

I’ve always thought it

selfish to ask for favors

in prayer other than

blessings or thanks

forgiveness

so now I am

selfish as I pray

pray that Morrison was wrong

start a petition

solicitors welcome

and its selfish to even thin God

would use her to reach e

yet here I am

still wanting to know

yet knowing I can not

fighting back

hard against the tears

emotional overload

keep backing it up

you haven’t earned it

save it for the joy

so I hold off

as if there is some

glory in being last

to break down

 

I remember when she was first born being asked by someone with an unfavorable view of the world how I could bring a child into all of the horrible things the world has to offer, and my answer was that this may be the child that grows up to change the things that you see as terrible – she could cure aids or cancer or develop an economic structure that is fair to a greater number of people. Now, when treatments fail to work, I wonder if something will be found that will work for her that be beneficial for other’s as well. Not that I want her on anything experimental, but you keep looking for silver linings. And I will settle for any treatment that works even just for her at this point – selfish again. The point here is that those behind the world IBD day are pushing for awareness. It’s a tough push as so much is misunderstood, and generally dismissed, about these diseases as many just presume it is IBS and do not realize the extent of the suffering. People ask me with real concern how my daughter is doing and it is tough to give an understandable answer as she presents as fairly normal most of the time,  but if they were to see her stools they would be horrified. There’s a long way to go but I hope in some way this can help spread the word.

\

WORLD IBD DAY- Hope in the Beatles

In honor of world IBD day and in honor of my 28th trip around the sun today, I’m reposting one of my favorite posts about my IBD story. I will never forget how this disease makes me feel. I will never stop being grateful, and letting others know they aren’t alone.

Been doing a lot of listening to the Beatles and anything on the Beatles Pandora station lately.

Here Comes the Sun always brings me to tears. Good tears. Something about the smiles returning to the faces, it seems like years since they’ve been here. I can feel that. And it’s such a good feeling.

Man, this last month has been…not describable in one word. Not really describable in one post either, which is why I haven’t been sitting and writing lately. Shame, shame, for I really wish I would have documented more. But I remember. I remember sleeping, or trying to sleep sitting propped up on my mom’s couch with a million blankets, only to throw them all off of me to sprint to the bathroom 6-7 times a night. Laying there with my hands hovering over my stomach, praying and pleading with God to make the cramping pain just stop so I could sleep. I remember feeling such loss and loneliness every time my boyfriend would go home after coming to visit me, just wanting so badly to feel better and be there with him, helping him with the purchase of our new home and packing and moving and just wanting my life back.

Little darling, it’s been a long cold lonely winter
Little darling, it feels like years since it’s been here

I remember the look of exasperation on my mom’s face when I wasn’t getting better, and the look of love as she made all of my meals to try and get some nutrition in me, and her talking to me about how important it is to have faith, and God would get me through this, He would answer our prayers. I remember her sitting in the car and praying with me for good news before we went in to my colonoscopy. Praying for answers, for results, for improvements. I remember her telling me that I will get better. That I’m an overcomer. And telling me it’s okay to cry. It’s not a sign of weakness. It’s a sign of strength. I remember her packing my hospital bag, buying random items from the gift shop to make me smile, taking care of my dog and bringing me water or pedialyte or blankets whenever I needed it.

Here comes the sun, here comes the sun
And I say it’s all right

I remember my dad sitting by my bedside in the atrociously uncomfortable hospital chairs. All day. Every day I was at the hospital that he could be there. Even when I was just sleeping. I remember how tired he looked. How he drove around aimlessly and prayed for answers, and pondered unanswerable questions with me. What causes this disease? Why do I have it? What are we going to do about it? When am I going to be better? How can we get other people to understand this? What’s the bigger meaning beyond this? I remember him going for walks with me down the hall, and joking with the nurses.

Little darling, the smiles returning to the faces
Little darling, it seems like years since it’s been here

I remember the nurses. The good ones mostly. But I also remember the one that blew up my vein when giving me a steroid infusion. And the one that said I was admitted for IBS. (IBS and IBD are two different ailments, one is a syndrome and one is a disease with no cure). I remember Jim, my favorite night nurse from  my first hospital stay at the beginning of the month, making jokes and giving advice on how to talk to the doctors to make sure I was heard. I remember on my second hospital stay, him coming to tell me hospital ghost stories and making jokes while I was getting emotional from the steroids and just not having any answers or improvement. I remember my favorite day nurse Jannell with her poufy hair and outspoken voice, telling me that I was one of the sickest patients she’s ever had, calling me Jack and telling me stories. I remember waking up to her Sunday morning telling me I needed blood asap and we were going to be doing a blood transfusion today. I remember being scared and sad and she told me everything was going to be okay, that she would be here the whole time and that I had choices. That it was going to be a good thing and she would be there the whole time.

Here comes the sun, here comes the sun
And I say it’s all right

I remember the changes in the medications. The discharges. The parasite. The antibiotics. The stomach acid burning. The we’re going to do remicade. The no we can’t do remicade until you’re stable. The phone calls from my doctors cell phone that I needed to make myself available to be admitted to the hospital. The colonoscopy that was useless because I was too inflamed. The TB test that was incomplete because I didn’t have a baseline to compare it to my immune system was so shot. The chest x ray. The blood draws. The IV team being called because I have terrible veins. Baby needles. Poke after poke after poke after poke. The waking up to check vitals. Low blood pressure, high heart rate, danger of organ failure. Blood loss. Cramping. Tears. Weight loss. Worry. Treatment plan change. New doctor. Infectious disease specialist. Lifelong medications. Steroid infusions. Steroid pills. Night sweats. Sharing a bathroom with other patients. Not making it to the bathroom on time. IV poles. Unable to stand in the shower on my own. Passing out while buying dog food. Collapsing on the stairs into the house when my legs gave out from under me. Shaking. Scared.

Sun, sun, sun, here it comes
Sun, sun, sun, here it comes
Sun, sun, sun, here it comes
Sun, sun, sun, here it comes
Sun, sun, sun, here it comes

I remember the night my boyfriend came to visit me at my mom’s house in the evening. I remember when he looked me in the eye and told me “I need you to get better. Now. I miss you.” I remember his text messages telling me that he was always going to be here, that even though I am sick now, and not to undermine my illness, but this is part of life and we will get through it together. That he’s going to be there for me in the good times and the bad. That we’re a good team and when one of us needs the other one to be strong we balance each other out. I remember getting strength just from holding his hand. I remember just being held in his arms when I was able to move into our new home. Just being so grateful to have time together, to be able to have our new home, to relax and to heal and to make memories and be together. I remember sitting outside and crying just tears of joy at how lucky and blessed I am to be here and able to experience these moments of love and to just feel happiness.

Little darling, I feel that ice is slowly melting
Little darling, it seems like years since it’s been clear

I remember the prayers. I remember my grandma coming to visit me at my mom’s house and crying on the couch with me. I remember her telling me that she does her walks in the basement and says her prayers. That she won’t stop, ever. I remember my aunts sending prayers and prayer chains and being on church lists. My grandma’s brother even did a whole sermon on me. I remember the novelas, my grandma praying every hour on the hour for my healing. Saying she won’t give up. I remember the prayers and visits and emails and texts from wonderful friends that I now consider family, bringing laughter and cheer and Golden Girls cards and books and magazines, and just checking in daily to see how I’m doing, sending pictures and memories past to bring smiles. I remember the encouragement from social networks, people I have never met before praying and sending kind thoughts and positive vibes. The power of prayers. And they were answered.

Here comes the sun, here comes the sun
And I say it’s all right
Here comes the sun, here comes the sun
It’s all right, it’s all right

I remember getting discharged and my mom wheeling me out to the car to my waiting dog, and how he put his head right on my shoulder and just hugged me. I remember being weak and unable to walk through the grocery store, riding an amigo to get food. I remember sleeping and sleeping. I remember the first infusion. And the naps afterwards. And the feeling better the next day. Feeling stronger every single day. Doing a little more each day. I don’t want to forget it. I don’t want to lose sight of the beauty of this life. Because it is so beautiful. There is so much to be thankful for. I know that sick days can come again. I don’t have control over when this can happen. It’s not my plan, it’s His. But I do know that what I can do right now, is shine like the sun. And share love. And light. and hope with the rest of the world. Because it’s there. You just have to believe it.

Here comes the sun. It’s all right. 20140531_210240