My Invisible Fight is Within Me #InvisibleFight

While there are so many problems to solve with the outside world, my biggest “Fight”, for me, is within.  I sometimes get tricked by my own Invisible Illness.

You see, my interior war is fighting all of the distinct troubles that Crohn’s, UC and all of the secondary conditions they cause me. Yet my biggest battle, one that I seem to almost continually lose is, keeping myself from overdoing it. That’s right, I am forever pushing my limits and overwhelming myself and my body. It is a vicious cycle that I seem to create. The Beaglet needs walked and taken to the groomer.

Sure I’ll do that, and then do my grocery and pharmacy shopping, pick her up on the way home and then somehow figure out how to get all of that upstairs to my apartment. Such a bad bad bad bad bad bad bad idea, but I’m thinking of efficiency and not pacing. I’m sure I’m not the only one with a confusing and confounding illness where my body tricks me. I’ll think, “Wow! I feel so good today better make it count before I get meta-body slammed!”, then I do so much stuff that I enable the meta-slamming myself. It’s truly one step forward, t-two steps back, but I don’t have Paula Abdul and MC Skat Cat cheering on.  I set myself up for failure.

Sometimes it’s just because I get frustrated, “Why shouldn’t I be able to clean the tub AND the toilet AND mop the bathroom on the same day?!? Other people do it all the time!” The answer is, fumes Donna, too many fumes make you puke and bleed. Unchecked cleaning fumes can knock me down for 3 days! Then I feel really dumb, because I know better but pride gets in my way.

I have to pace myself and break off little chunks into daily assignments. I place them on my calendar and make myself follow it, unless I am too sick, then I reschedule. I have to keep myself under control so that I, hopefully, have more well days than sick ones. That is my Invisible Fight.

My 30 Things: Invisible Illness Week 2015

30 Things About My Invisible Illness You May Not Know

Donna Kay and Jules at our first in-person meeting! So much fun!

1. The illness I live with is: Crohn’s Disease, Ulcerative Colitis, Chronic Functional Abdominal Pain and AutoImmune Arthritis
2. I was diagnosed with it in the year: 1997
3. But I had symptoms since: 1995, but I have had some minor symptoms for most of my life.
4. The biggest adjustment I’ve had to make is: Changing my plans for my life.
5. Most people assume: That Crohn’s is like eating bad food.
6. The hardest part about mornings are: Managing my medicines so that I don’t get an attack, also the stiffness and swelling in my joints is usually worse in the morning.
7. My favorite medical TV show is: Kingdom Hospital
8. A gadget I couldn’t live without is: My Medtronic Remote
9. The hardest part about nights are: Managing my sleep hygiene so that I can stay as healthy as possible.
10. Each day I take __ pills & vitamins. (No comments, please) 26
11. Regarding alternative treatments I: Am open as long as I research it and can find a reputable practitioner to work together with my other team of doctors.
12. If I had to choose between an invisible illness or visible I would choose: Neither, I would choose health.
13. Regarding working and career: I have adjusted to my new surroundings and I have found other ways to stay social and to keep current with my peers and the world.
14. People would be surprised to know: That I love Karaoke.
15. The hardest thing to accept about my new reality has been: Feeling like I had been taken out of functional society.
16. Something I never thought I could do with my illness that I did was: Find happiness in all of my relationships.
17. The commercials about my illness: Can be silly, but has also brought a TON of awareness.
18. Something I really miss doing since I was diagnosed is: Eating fruits and vegetables.
19. It was really hard to have to give up: School and the plans for my career.
20. A new hobby I have taken up since my diagnosis is: Advocation and crochet.
21. If I could have one day of feeling normal again I would: Eat anything I want and lots of extreme sports.
22. My illness has taught me: To find the positive in as many situations as possible and to look deeper at the people I meet. 
23. Want to know a secret? One thing people say that gets under my skin is: Why don’t you just suck it up.
24. But I love it when people: Treat me like a regular person…but special!
25. My favorite motto, scripture, quote that gets me through tough times is: Proverbs 15:1 A gentle answer turns away wrath, but a harsh word stirs up anger. 
26. When someone is diagnosed I’d like to tell them: Take my hand and a deep breath, you are not alone! . 
27. Something that has surprised me about living with an illness is: The amount of time it takes to try to be as healthy as possible.
28. The nicest thing someone did for me when I wasn’t feeling well was: Brought food with recipes and continued checking.
29. I’m involved with Invisible Illness Week because: I want everyone to know that we can do so much and that we are Chronically Awesome!
30. The fact that you read this list makes me feel: Grateful and humbled.

Start With an Ember

Submitted for the #ChronicallyAwesome Foundation and #Blogsupport’s #WordFeast Blog Carnival: Happy Thanksgiving!

So many things happen when a person gets sick; so many emotions, transitions and alterations to his/her life. I know this first hand, as a patient, patient’s family member and as a caregiver. I also know that the first things that come to mind in that time are terrible and despairing thoughts that just take up lodging in our heads. It can take time {months, years…decades} to see the blessings that can come from an illness too. Nothing is more important than finding the light in the dark cave. Sometimes the light is just an ember and the cave is miles deep, but there is always a coal. Once I found my ember I was able to tend it and start a fire that helps keep me warm and safe in the dark maw that is my cave of illness. The fire is so damn big these days that I can rotisserie a twenty pound turkey with it!

Find the light in the darkness.

When I was first diagnosed I was hopeful for the future still, but once I started getting worse I started to slip into depression. I wasn’t able to do much and I was housebound. My days started running together, wake up watch tv sleep wake up watch tv sleep eat sleep watch tv etc., etc., and so on and so on. I had no routine and I felt aimless and like I didn’t fit into society anymore.

While all of this was happening my Dad was very sick with his Crohn’s, we didn’t know that he was dying. My mother and I were taking shifts for his round the clock care. It was a very hard time and he could have been miserable but he always had a smile for everyone. His outlook was amazing and it was contagious. He passed me an ember.

I realized that life was more than illness and that I still had gifts and talents to share with the world. I started writing a book about my experiences, I found Chronically Awesome and Jules gave me the opportunity to start blogging for her. I took back my life and I love it now. I still have constant pain and problems but they don’t plague me now. I have spent the last two and a half years on “Project Donna” and have been working on making my mind and body as strong as it can be despite my illness. All of this has raised my self-confidence to higher levels than even my healthy self had known. I know it has helped my friendships, my doctor relationships and my romantic life.

I’m always trying to get stronger and I still have a ways to go but I know that I wouldn’t have the chance to be a writer, a podcast host or an advocate if I hadn’t had to go through all of the pain. It’s not the life I planned but it’s the life I live and I want to be my best.

I hope that this post can help someone who is stuck in their own limbo, you can find more in life than pain. I’m passing this ember on, feel the warmth, find your light and pass it on.

Pass it on.

I Recharge in…The Twilight Zone

Rod Serling helps me to get back on my feet, by way of, The Twilight Zone.

Submitted for your approval, as a part of the Patient For A Moment May 2013 Blog Carnival.

The Topic this month is, “How do you recharge when you need a break due to illness?”

This may seem nutty or out of this world but when I am exhausted, flaring or just completely fogged out I can’t concentrate.  One of my favorite ways to escape is reading, the only problem is that I straight up can’t concentrate from one word to the next.  As a chronically awesome person I battle my own attention span in so many ways due to: fatigue, pain, pain medicine, steroid therapy, brain fog, constant doctors appointments, bills…and…what was I talking about again? Yeah, that happens all of the time. Seriously I’ve found myself watching hours of How It’s Made episodes and not knowing what I’ve seen. Luckily the trivia vault in my brain functions on autopilot and I remember random facts days later whenever I need to school my friends, but I digress.

I used to love to watch YouTube videos on my computer but that can get out of hand and is rather unfulfilling. One day I was flipping through NetFlix and stumbled upon classic American television, The Twilight Zone! The Twilight Zone is perfect for my recuperation days because it’s an anthology series, there are over 100 episodes and it is always unpredictable. One episode shows a man betting his soul, another can tug your heatstrings as children pick out their new “electric grandmother” and still another teaches me to live my life as it happens rather than following superstition.

Rod Serling was a genius. Not only because he wrote over 75% of the episodes but because he created a series of shows that can be watched back to back with little to no boredom. I am constantly intrigued by the way he can spin a compelling story in 22 minutes, just long enough before my mind starts a-wandering. It’s like he knows me.

This may seem like a silly post but I researched it this week. I just had several major dental procedures done and I spent an inordinate amount of time on my couch. Whenever I came back to consciousness I flipped on my pal Rod. He always has a story for me and I even found myself thankful for the life I have, rather than living in that strange dimension where store mannequins have memories and Robert Redford guides old ladies to the hereafter, that place they call, The Twilight Zone.

Once I have traversed all of the twilight dimensions I may have to see what Alfred Hitchcock Presents.

My Routine For Spontaneity

 

Keeping stress down helps us maintain our other duties in life…like living it.

This Post is my submission for the April Patients For a Moment (PFAM) Blog Carnival. The subject this month is,The Stresses of Chronic Illness, so here we go…

Stress is a necessary evil to most people. It can help you meet deadlines, avoid danger and highten your senses to keep you safer. That is what normal life stress can do, but there are so many other types of stress to deal with every day that are particular only to our world and they can truly make us sicker. I struggle to keep my everyday stressors to a minimum because I also have to deal with the stress of being Chronically Ill. Life with a chronic illness is super stressful, simply because we don’t know what we are going to have to deal with from one second to the next. I don’t know if I am going to be able to finish my laundry or am I going to be doubled over in pain within the next five minutes. Crohn’s Disease definitely puts a damper on my ability to be spontaneous and that in itself brings on the S-word.  I have learned a few tricks that may be helpful to other people in my situation. I like to at least have the illusion of spontaneity in my life and my best advice for that is to plan, plan, plan! That sounds rather counter-intuitive doesn’t it? Trust me it works.

• I always carry a pill box with me and I try to have at least 24 hours worth of medicine on me at all times. I know that is tough, but it is part of my morning routine, wake up, take my pills, fill pill box though the next morning and then place it in my purse. If I know that I have my pills ready for the day, then I that makes it easier for me to do something unexpected later. One other thing I do, is if I’m leaving later in the day, I refill and doses that I may have already taken. If I run into any delays or if I get sick at a friends house and have to crash there, I have the medicine I need and I may be able to stave off worse pain because I am not varying from my medicine routine.
• Try to keep a normal but flexible routine as much as possible. I try to set up my week so that I can make sure to get the rest I need and still take care of my necessary duties. I go to the doctor every Thursday, that is doctor day and I don’t schedule anything else on those days. You never know when the doc will require new lab tests or paperwork or if they are going to be backed up and keep you in the lobby for 2 hours. So I keep the rest of the day clear to keep my stress level down. On the other days of the week, I try to keep my days structured. I wake up at a certain time each day and I have my house work split up into workable chunks throughout the week. Mondays I vaccum the living room and clean up any dog hair on the furniture. Tuesdays I swiffer the floors, Wednesdays I do my laundry, Fridays I dust and clean my room. Each day has a short workable job and if I have to miss it for something fun (oh darn), or perhaps for a flare induced nap, it is not going to be the end of the world, the absolute worst case scenario is that I will do it next week. Not a problem. I also allow myself time to rest, and split up my errands to do on certain afternoons if I am up to it.
• I find it very important to go outside any day that you physically can! Running an errand may seem boring but it gives you a change of scenery and a sense of accomplishment, once you have come home. The longer you stayed cooped up in your house the harder it is to work up the gumption to go our again. Plus, sunlight gives us valuable vitamin D and supes up our endorphins so that we feel better.
• My last one is so simple but SUPER important, get dressed every day when you get up. It is so easy to let the days get away from us when we are in our PJs all day and all night. If you are up and dressed you will be far more likely to want to do something new if you get the chance.

I have been working this plan for a few years now and I can tell you that I don’t get freaked out if something comes up and I have to change my day. I know that I am presentable and that I have my medicine, I can keep my house clean and enjoy the sun. Sometimes I am too sick to get out of bed for a couple days, but I know that I don’t have to freak out because my main stuff is always manageable. I hope that this helps my other friends out there that are dealing with undue stress caused by pain, exhaustion and constant illness. I hope that you can also embrace the chance to enjoy the sudden opportunities that sometimes come up and that so many of us miss.

Sing, Sing a Song…

You may not be aware of this, but I Love Love Love live music. When I’m feeling up to it, I try to attend live shows, open mics and new formations of some of my fave local musicians. Music makes me feel better and is an integral part of my life and health. I don’t think that I can overstate the importance of rhythm in healing and pain relief, from focused breathing and Lamaze to Yoga and Tai Chi, our bodies crave it. Alas, that is for another post. This blog is all about the creativity that was swirling around an event I attended, I could feel it flowing through the room. My roommate and most of my friends are musicians. I get to hang out with some really talented and creative people and, most of the time,  I don’t even have to leave the house. I will freely admit that I can get a bit envious of their talent. I’ve always wanted to be musical and therein lies the rub. I haven’t played an instrument since middle school and even though I love to sing, I tend to sound like a dying walrus {so I limit my public displays to comedic relief and acts of vengeance}. My real talent lies in my uncanny ability to hand over a cover fee and support my harmonic homeys.

So how did I end up taking part in a singer/songwriters’ event the other night. My mad skillz were put to use at the door and I thought that was the end of my involvement. I went to support my friend and the several other people who poured their souls out on stage. They put their egos aside and asked the audience to critique their songs. What an exciting and humbling experience to be a {albeit small} part of the creative process in a very intuitive, personal and enjoyable way. I loved it and I want to go back. I had no idea what kind of music to expect, I had only heard a few of my friend’s songs and didn’t know anyone else. Out of the 15 acts, there were at least 7 different musical genres and each song was original. I definitely increased my hipster cred, and I hope that they all will find great success. Everyone in the audience got a critique card for each song. We were asked several questions: Who does the singer sound like? On a scale of 1-10 what would you rate this song? What do you think? There were several other questions and the Songwriters Association obviously spent a lot of time on these cards to help the musicians hone their craft. It was their inaugural event and I think it will be quite successful. I’m jazzed to see how they will build this program and share it with the rest of the songwriting community. As I was listening, I started thinking about what a great idea this showcase is.

I am quite excited to see how we can build our Chronically Awesome community and share in our creative endeavors. Jules announced the Chronically Awesome Foundation on the Chronic Chronicles podcast a few weeks ago. Our group is one of the most innovative that I have ever seen. We have harnessed the power of social media to find each other and tell our stories through FaceBook pages/groups and Twitter chats. Who has two thumbs and spills her guts in a Crohn’s blog? You’re reading her, but I am just one. There are many of us and we each have a different story that we try to share in the most positive light possible. Just through our friendships we help mentor and share our tips, pointers and success stories. We also share our art, including but certainly not limited to writing. I look at the Chronic Chronicles Pinterest boards and I see so many friends sharing crochet, crafting, sewing, painting, patterns and instructions with people they think will appreciate them. My arthritis can flare terribly this time of year, but crocheting helps, I will never run short of patterns and my hands will hopefully keep their dexterity. Thanks to your sharing.

My nephew and the Easter Bunny I made him last year. Warm fuzzies all over!

Numerous studies have shown that a creative outlet can help to lessen the daily wear and tear of chronic illness. It can also raise endorphins and relieve pain. I know that sometimes we can’t keep up with our projects because we are too sick. What can we do? Share our ideas, help our friends learn new skills and/or fine tune their work. Share our insights and help them when they are stumped. We could all end up feeling better and more fulfilled. We just have to create and share. I know that I feel a sense of accomplishment when I have completed a project or helped someone else learn one of my crafts. We can still be inspired and keep learning even if we’re stuck in bed or in the hospital. One of my greatest fears is outliving my usefulness. I do my best to keep my mind sharp and try to keep up with as much therapy as I can handle. I know I’m not the only one and that’s why I want to see this fantastic community and foundation grow quick-fast-in-a-hurry.  We are a loving, positive and productive congregation and it makes a difference, so I want to share these ideas and expand our circle of friends. I can’t wait to see what we do next!

The Songwriter Showcase was a lot of fun.  They were super supportive of each other and very engaged in the songwriting and production process. My friend was my favorite performer, of course, but I was also introduced to new acts, new friends and my Reverbnation profile is a lot fuller now. How cool is that? I was duly impressed and I hope I get to go back soon.

#A4Amonth Day 4: Surprise! Bet you didn’t know…Introvert to Cheerleader!

Day 4: Surprise! Bet you didn’t know…Today’s post theme is all about the reveal. What’s something people would be surprised to know about your life as a caregiver or your loved on. Uncover it and elaborate upon in stream-of-consciousness-style.

One thing that has especially surprised me as a caregiver, is how much I have really grown as a person. One thing that I have been able to do is overcome my crippling  shyness. I really have a hard time in crowds and around a lot of strangers. It’s very easy to just live like that when it is only effecting me, but once I learned that you have to speak up at the hospital or risk your patient’s care, I started talking. I started introducing my patient and myself and writing down the Doctor/Nurse/Tech/Aid’s name and remembering it the next day. I started asking about their day and their families, how they decided to follow medicine as a career and I got to know them. Complete strangers! If I was at a party, I would be stammering all over myself or just smiling and nodding, hoping to see someone I knew. 

This change seemed to come about because I am (unfortunately for me) much more willing to exit my comfort zone to help someone I love than to better my position. It’s worked in many ways though, when my Mom was in a rehab center, she had an awful infection caused by her radiation treatment. She worked so hard to be strong and work on her rehab every day but she kept falling behind. One day we got word that the insurance company was sending her home and she was on her own…I was fit to be tied so I started calling the insurance company myself, I called the helpline and her case manager and found out that we had one way to appeal, her doctor could present her case and if he was persuasive enough and had enough documentation he could buy her some time. I went to each of her care groups, Physical and Occupational Therapy, Social Services, Case Workers, Nurses, Aids and her Doctor, told them what had to be done and withing 2 hours we had a plan of attack and the doctor was able to plead her case the next day. WE WON! They gave her another week without prejudice and tracked her progress from after her infection, not before. Our team would not have been able to work so fast if we had not had a rapport and/or if no one was there to stand their ground.

It’s not just me, I’ve seen it in so many family and care advocates that it continually astounds me, but it definitely makes me so proud! Go Patients, Go Caregivers! Go Team!

#A4Amonth Post 3: From the Fish Bowl

It is hard for some healthy people to understand life in a Chronically Awesome household. Most of the time they think our lives are a torturous “Job-like” existence. Job, in the Bible,  lost his wives, his children, his livelihood and his health all due to a bet between God and Satan to see how faithful he was. In the end he was “reimbursed” 10 times over but he had to lose it all first. That is a horrible story to be compared to. My Dad had Crohn’s and lost his battle, my brother and I have Crohn’s and fight it every day. My mother lost her bout with Cancer,  but never in my life have I considered us Job-like. We have dealt with our problems just like any other family would, one day at a time.

Being a caregiver is often misconstrued as a duty posistion,  someone gets stuck with it because no one else will do it. I disagree. In talking with other caregivers, i’ve learned that most of us do it out of love. We try not to get burnt out because we want to be there for our loved one. We work to have social and private lives of our own and to make sure to employ respite care services so that we remain fresh and healthy. It’s no picnic living in a Chronically Awesome family, but it is my family and there is always love. Whay more can
we ask for?

#A4Amonth Day 2: Favorite Things

Day 2: These are A Few of My Favorite Things Post

List time! Write 5-10 of your favorite things about your loved one? Celebrate their uniqueness and be sure to tell us why those are your favorite things.

I’ve led an incredibly interesting and fulfilling life. I have learned to appreciate it through the examples of my parents not just as patient/advocate/caregiver but also as the people and parents they were. We (my brothers and I) learned to navigate the world and our adult lives. These are a few of my favorite lessons {things}.

1. You do what you have to, but always leave time for the important things in life.

This picture is from the first day of school in 1988. My Dad is taking the picture (he was a photographer) but we are all together for the first day of school. What you can’t see is that he was recovering from serious surgery and that my mom had just gotten off the 5pm to finish shift at the bank. She sometimes had to work 14-16 nights but she would sleep during the school day and see us for an hour or so before she had to leave again for work. We learned not to take these moments : school starting, soccer games, birthdays, family reunions, vacations and quiet family time for granted. They did everything that they could to provide for us and still give us a happy childhood. I hope I can do as much for my future children.

2. If find something you love, learn everything you can about it, and share it with others. 

I mentioned that my father was a photographer. He had a real passion for photography, not just the visual art part but the technical aspect. He took classes and went on to teach classes, take pictures as a business and do family portraits for Mothers Day at church, along with other functions. He celebrated the art and science of photographs and shared it with others, including my younger brother who is a very talented photographer today.

My mom loved volunteering. Growing up she was our Sunday School coordinator, Youth Group Sponsor, Emmaus/Chrysalis Leader, Camp Counselor and she loved to volunteer for St. Jude Children’s Research Hospital later in her life. They both taught us to share, give back and appreciate others talents too.

3. Enjoy life as a family!

We are a family of shooters! My Dad and I used to compete together at the Second Chance Shooting match every year. He taught us gun safety and how to respect a weapon before we ever were allowed to touch a gun. We learned and appreciated all of the lessons. I can’t even think of the word “gun” without the gun safety rules flashing in my brain, 20 some years later. We shot as a family and would vacation for a week each year for this particular event. We worked there when we were old enough and made life long friendships as the weeks passed. The most important thing was we did this as a family and our Mom was the crack shot of the family!

4. Be comfortable in any environment

It didn’t matter whether we were at a greasy spoon, a 5 star restaurant or our kitchen table, we were taught manners. It was so important to our parents to make sure we would be comfortable at any event that we may ever attend. They didn’t want us to ever feel like we didn’t belong. No child of their’s would be limited by their manners. They taught us etiquette and confidence, a lesson I have used countless times and am always grateful.

5. Treat others as you want to be treated.

This seems so elementary, “The Golden Rule”, but it is a huge part of patient advocacy. We, patients/advocates/caretakers, usually only see healthcare providers in times of stress. It is important to remember that we need to be as nice as we can, even in excruciating pain, for the simple reason that “You catch more flies with honey that vinegar.” If you are a compliant patient and you have a good rapport with your healthcare staff you will be amazed at how they treat you. You are set aside from the group and more importantly, you are Remembered out of hundreds or thousands of other patients. Be remembered as the funny patient that every one wants to help and not the pain in the ass mean patient that only gets the minimum care. We are dealing with people, after all, and we are all of us fallible while we are trying to get through our day.

These are some of the things that I am so thankful to my parents for teaching me that I have had them to “Favorited” in my mind for years. I’m not big on “Bright Copper kettles and warm woolen mittens”…at least not in August.

#A4Amonth Portrait Post

I have decided to take part in the WEGOHealth blog carnival this week because I think this is a fantastic and fun way to blog. I have also had a very harsh year and I would like to use this opportunity to kick start my blogging again. I’ve missed you guys!

August 21 • Day 1: Portrait Post
Write a descriptive portrait of your loved one. Share qualities that make them, them – and include an image! (A photo or
creative work of them!)

I am writing about the two people I have advocated for the most {other than myself} my parents, Melissa and Dick. It may be a bit different from other caregiver blogs because they both passed away due to their illness. My father left us in 2005, and my mother just moved on in May of this year.

 

These are pictures of my parents as I remember them, healthy, vibrant, happy and enjoying their lives whole heartedly. I was privileged enough to be there to help my Dad as he fought Crohn’s disease and my Mom as she battled Cancer. I learned to be the person and writer I am by watching how they lived, loved, raised a family, fought for their strength and how they left us. I learned to advocate for myself through my Dad and I learned how to fight for and care for others from my Mumsy. These lessons are etched into my soul.

I have to admit, my grief is still suffocating me and I’m crying on my laptop right now, so this will be a short entry. Before I finish, I want to explain something to the other caregivers out there: We fight for our patients and we fight the disease and we do all that we can to navigate the healthcare world, but fighting until the end is NOT a failure. We are there to help them in any situation we can, up to and including having their backs until they go. It’s depressing as hell, I know, but it’s the truth. Do your best, give it your all and never regret being there for your patient!