Wednesday, August 10, 2016

Becoming alchemists

Does anyone know what an alchemist is?  An alchemist comes from alchemy, meaning the art of transforming metals to gold.  We, too, can become alchemists.  But first we must change the language we use.  We must alter the language we use in order to change the brain's association and meaning of information.  Words are very meaningful and can trigger the brain to take well patterned pathways that keep it stuck in a looping mechanism.  Changing our language and our associations will help the brain to move out of these patterns.  This will assist us in moving into a place of condience as we understand that we do have the ability to take control of our health and reclaim our lives.  We can choose to look at our lives from a different perspective.

Here is an exercise to help you learn to modify your language and also change your associations to your personal challenge.  In fact we are going to stop calling it a "challenge" and simply refer to illness by a more neutral word- "it."

With this guideline in mind, please reflect on the following questions:
      1. How has "it" given me a deeper understanding of myself?

      2. Has it lead to a deeper level of compassion for both myself and others?

      3. How has "it" demonstrated to me my own personal strength?

When you have completed the questions, go back and edit the times where you may have mentioned any words that relate to illness in any way.  Using the same familiar vocabulary associated with illness re-enforces old brain patterns and associations that keep the brain looping in the same pattern. Be careful to keep your wording neutral and be aware of language triggers that keep you personally identified with illness.  Please omit words like "my" and avoid any references to symptoms of illness. It will get easier with time, but you have to stick with it.

"The secret of change is to focus all of your energy, not on fighting the old, but on building the new."

Friday, July 8, 2016

The lonely road

Sorry it's been awhile since I've posted a serious  health update. But the truth is things have been chaotic. Up one moment down the next. 

In America we take eating for granted. When we are born our Mom's provide milk to help nourish us, to help us grow, and to help us build strength. Then as we continue to grow up food begins to be associated with socializing. In grade school we bring treats in to celebrate birthdays. No parent ever organizes a vegetable platter to bring in for 2nd graders; instead it's donuts, cakes, and cookies. As we continue to grow up, we organize grabbing dinner with friends or meeting friends at the local snowball stand. Then we go to college, where orientation uses food to entice students to join various clubs and sports and students use food to bond with their dorm mates. When returning home on breaks, students use food and alcohol to reunite old friendships. After college graduation happy hour becomes a common phrase amongst the new working force as a cheaper way to eat and drink. When we move into our first home, neighbors bring over casseroles to welcome you to the neighborhood. When we are sick, friends bring us soup to show us sympathy.

What if you couldn't engage in all of these social events? What if your stomach was paralyzed meaning you suffered from gastroparesis? What if you had to know every ingredient you put into your mouth? I was first diagnosed in February after months of suffering from frequent vomiting, diarrhea, or constipation. Ever since I had meningitis last summer something just wasn't right. I am always nauseous and in stomach pain.

Since going to Paracelsus in Switzerland my symptoms have shifted from vomiting to severe constipation. I have been hospitalized at least 10 times this year alone, many of which were for constipation. When I'm hospitalized they usually have to use an NG tube, soap sud enemas, colonoscopy preps and magnesium citrate. That is in addition to the miralax I take 4 times a day, colace, senna, Linzess, a prescription laxative, and colonics. No these are not good to take  everyday over time but right now I have no other options. Additionally due to all of the inflammation in my stomach I am practically allergic to every thing. I can't eat dairy, gluten, or eggs. I was gluten free before and it was doable but now I'm on a pretty strict diet. A staple item in my diet is soup but it's hard to eat in the summer due to the already existing heat. The other items include bone broth, very cooked veggies, and some animal protein. I was eating salads but learned it is one of the hardest foods on the stomach. 

It's very isolating not being able to partake in social events because they surround food. I don't like to be the person asking the waiter/waitress, 'does this contain gluten?' 'Hold the croutons', 'is the soup of the day a broth or is it creamy?' It gets old and I find it a nuisance when I'm out with friends. Eventually when you've turned down social event after social event your friends stop inviting you out even if it doesn't involve food because they figure you'll turn it down. 

Another tricky piece to this gastroparesis puzzle is my weight. Last summer I was the heaviest I had ever been but then I started drastically dropping weight from September to February. I was very self conscious to how much weight I was losing and just how quickly I was losing it. Numerous friends thought I had an eating disorder and even asked me about it. Truth was I didn't even know what was happening to me. Then in March/April I switched from constant throwing up to being constipated often. Over the past few months the cycle seems to be, that my stomach looks pregnant and bloated. Once again I found myself very self conscious. I have a strict bowel regiment and even then sometimes it's not enough to keep me out of the hospital and not bloated. 
                  February 2016
                      May 2016

Chronic illness is lonely especially when there is no cure at this time. During this whole time I tried to keep a pretty normal social media presence but no one really knew what I was going through. Based on an Instagram post you can't tell what symptoms a person is suffering from. The moral of the story is 'It is easy to make assumptions about situations you know nothing about.'

"People generally see what they look for and hear what they listen for."

Sunday, June 19, 2016

Focus on Happiness

Too often we focus on our illness. When we tend to do that, we make our illness our identity. Our illness doesn't define us. It is important to still find joy every day. Here is a list of 50 things that bring me happiness. 

1. Kisses from my puppy
2. Standing in the sun on a nice warm summer day 
3. After a long day of cleaning and the house is finally strong
4. Hot baths with Epsom salts and essential oils
5. My diffuser
6. First swim of the summer
7. Being called beautiful
8. Hearing your favorite song on the radio and singing 
9.  Receiving a handwritten letter in the mail
10. Sleeping in late
11. Belly laughs
12. Popping bubble wrap
13. A jack Browns burger 
14. Dance parties
15. Watching sunrises 
16. Having a bonfire with s'mores
17. Finding the last t-shirt in your size 
18. Waking up without an alarm
19.  Warm, homemade chocolate chip cookies 
20. Saturday mornings
21. Brunch 
22. Catching up with an old friend
23. Traveling
24. A good cry
25. Pretty leaves in the fall
26. The first snow of the season 
27. Watermelon on a hot day
28. Perfecting a new recipe
29. Getting my haircut
30. Finding a perfect pair of jeans
31. Stargazing
32. Long weekends
33. Leggings
34. A good hair day
35. Finding money in your pocket that you didn't know you had 
36. The abundance of family
37. Taking off your bra as soon as you get home 
38. Getting a manicure
39. Lazy Sundays 
40. Finding something you love on sale
41. The feeling you get after working out 
42.  A long hot shower
43. Clean sheets
44. Advocating for Lyme disease
45. Growing flowers
46. Journaling
47. The smell of saltwater at the beach
48. A long walk on a beautiful day
49. A glass of wine after a long day
50. The realization that this too shall pass

Please feel free to share the things that make you happy too!

"Being happy doesn't mean everything's perfect. It means you've decided to look past the imperfections."

Saturday, June 18, 2016

Motivating songs to help get you through

There were many songs people rely on to help inspire them to get up each and every day to fight. Here are the songs I found most fitting when fighting illness. Feel free to comment suggestions.

1. Fight song by Rachel platten
2. Don't stop believing by Journey
3. Shake it out by Florence and the machines 
4. Brave by Sara bareillis
5. I hope you dance by Lee Ann Womack
6. Learning to fly by Tom Petty
7. Not afraid by Eminem
8. I am invincible by Cassadee Pope
9. Girl on fire by Alicia Keys
10. Keep holding on by Avril Lavigne
11. Roar by Katy Perry
12.  Alive by Sia
13. I hold on by Dierks Bentley
14. A little bit stronger by Sara Evans
15. Stronger by Kelly Clarkson
16. Eye of the tiger by Survivor
17. Pocket full of Sunshine by Natasha Bedingfield
18. I believe I can fly by R. Kelly
19. Keep your head up by Andy Grammer
20. Landslide by Fleetwood Mac

Thursday, May 12, 2016

Lyme disease awareness month

As many of you know it is Lyme disease awareness month. Before my diagnosis Lyme disease I had no idea what I was in for. Since my diagnosis I have been through 4 picc lines, 2 ports, meningitis, gastroparesis, sepsis twice, appendicitis, gallbladder removal, and even ended up in the ICU. I've been hospitalized 7 times since the New Years. My days are filled with doctor appointment after doctor appointment. Lyme disease is no joke. Lyme disease roars it's ugly head in many different ways. For me it's affected my brain, my GI system, my heart, my endocrine system, and the list goes on and on. My point is that Lyme disease doesn't just have one face. The symptom list is endless. FACT: is less than 50% of people get a bull's eye rash.
FACT: children are at the highest risk.
FACT: Lyme disease is on every continent except Antarctica
FACT: there is no known cure for late stage neurological Lyme disease, but remission is possible and what I strive for every day!