The content in this blog is based on my experiences and the guidance I have received from my Care Team determined by my individual and evolving needs. Before beginning, trying, or experimenting with anything mentioned in this blog, you MUST CONSULT A PHYSICIAN!!
Nov. 29 - Toot that Horn!
Want to hear a secret? You’re awesome. (It’s actually not even really a secret). This is going to be hard for you, O Modest One, but you gotta give yourself props today! Write three things you love about yourself – things you’re great at – or just want to share. Don’t you dare signpost or undercut those self-compliments!
Why yes, I am awesome! I do my best to be a good listener and think outside the box. I try not to judge and work hard to be proactive. :)
This one is the hardest one for me... I'm not very good at tooting my own horn.
Nov. 28. A Time to Give Thanks
What’s the one thing you’re most thankful for? Write a list of three things that you’re thankful for, excited about, or inspired by.
I am thankful that I have a family who loves me no matter my condition.
1. I love that my niece, Missy, can spell my name independently and knows my phone number by heart! She inspires me to find new reasons to smile each day and just embrace the silliness of it all.
2. I am excited that I am getting one of those cool gel pillows for Christmas this year! I freaking love my sister's and cannot wait to get it!! I really think it will help with my night sweats and help me rest better.
3. I am in awe of my sister and how creative she is. She has the ability to pick up new skills, create stunning crafts out of gaudy trashy looking items... She has no idea how amazing she is. I love you Jennifer!!
Nov. 27. Black Friday and Holiday Shopping - In preparation for Black Friday holiday shopping, give some advice on how to survive the long lines and packed stores. How do you find the best bathrooms? How do you stay comfortable on your feet? Give us some tips before heading to the stores.
Order online! Or do what I do - offer to babysit so your friends can go shopping, then slip them some cash and your list. :) We can usually get the children to enjoy a cuddly fun day of movies, books, snacks, helping cook, and decorating the tree... Which is much more fibro-friendly than fighting it out in the mall at 4am.
Nov. 26 - Top Three Tuesdays: List three questions you have for other patients.
1. How do you manage to exercise?
2. How do you juggle your work/job with your illness(es)?
3. How do you not feel guilty for doing more with your family?
Nov. 24. Take the High Road: Write about a time you had to be the bigger person and take the high road.
A few days before my Dad passed away, I was very sick with a nasty stomach virus. My lupus was irritated and the medications and harsh virus symptoms had thrown me into a major fibro flare. I was absolutely miserable... Dad called and we talked, but he could tell I was very sick so he told me to rest for a while and he would call me later.
About two hours later, Mom called and said that he had coded and was being rushed to the hospital on an ambulance. So I got dressed and met them at the hospital. Whenever I called the Nursing Home to speak with one of the nurses (while he was in route) she fussed that I should have been there to see him instead of at home. In her professional medical opinion, she stated that my "issues" were psychological and I was being selfish.... I knew that I was doing everything I could do to help Dad, going to see him almost every day, having multiple conversations with him over the phone every single day, and doing a lot of surprise checks on him and the nursing staff - sometimes even twice a day! I was terrified and was so sick - but I knew that she was also scared... and that my Dad would not want me to show my @$$. So I took the high road.
I'm not sure if this is what this post is asking about, but... for me it counts.
Rest in peace, Dad. I love you.
Nov. 23. Teaching the Teacher.
What’s something you taught your doctor related to your health?
When I was first diagnosed with fibro/lupus, I kept a detailed pain journal that included everything that I ate, done, felt, and even watched on tv! (Yes I was one of 'those patients'! lol) I was able to show proof that pain elevates my blood sugar - drastically, but by increasing my water and laughing I can ease my pain.
Nov. 22. Favorite Fridays. What are your favorite blogs to read and why?
My three favorite health/condition related blogs are:
Felicia Fibro has an amazing site that has gotten me through a lot.
But You Don't Look Sick - very good information and a variety of authors help keep the site fresh and offers various perspectives.
At least once a week, I skip on over to Illustrated with Crappy Pictures to check out the hilarious styles of blogging artist, Amber Dusick. Her work always makes me laugh, sometimes I will go through and read the archives - but not in a stalkerish kind of way.
Nov. 21. Mental Mind Meld.
Mental health issues can affect many other conditions. Write about mental health, emotions, and challenges as they relate to your condition. How does your mental health affect your overall wellbeing?
All month long I dreaded this blog entry - this is what I am struggling with the most right now... I don't know if it is the grief or depression/anxiety that comes with chronic pain... or if it is from my time on the insulin pump and how my 'normal sugar levels' are changing... or if its from my fibro/lupus and the medication changes I've been going through... or could it be depression as my cervical cancer is finally in remission... or am I having a mid-life crisis because I am 34 and completely utterly alone - so much worse than just being single... or am I just going crazy?
Whatever it is, I am not doing well with it at all. Which means I'm not resting well when I have the chance, which leads to problems focusing and concentrating (outside of work)... I feel somewhat normal at work most of the time, so I am spending massive amounts of time there - I have a purpose at work... and that's not good for me either.
So the short answer to the blog question is: pfft.
Nov. 19. Top Three Tuesday. Give three pieces of advice you would give to a caregiver.
I am also a professional caregiver, and I train others to take care of our patients. In my personal life, have been on both sides of the care giving relationship. I took care of my best friend and both of my parents before they passed away. And I have days where my parents - now my sister and her husband take care of me. So I think that I have a slightly different perspective than most spoonies.
The first piece of advice I always give someone new is that someone's condition or illness is -not- their responsibility. Providing care is a big role to take but if the person becomes sicker it is NOT because the caregiver is doing anything wrong. Sometimes things will get worse, sometimes things will get better. I feel that sometimes caregivers are bullied into voicing a rose-colored-glasses view on things so no one will think they are doing a poor job.
The second piece of advice I usually give is to carve out time for themselves. Not just 10 minutes for a hot shower or a cup of coffee, but some real time. An hour - at least. The caregiver needs to be able to rest, read, drink a cup of coffee - do whatever he/she needs to recharge.
The last piece of advice I tend to offer is to have a notebook on hand. Writing down questions or odd symptoms can come in handy at doctor appointments - especially if the caregiver is not the one taking the patient to the doctor. Also, during doctor appointments, notes can be taken as well to help communicate with the entire care team.
Nov. 18. Three Truths and a Lie.
Tell us three things that are true about you, your condition, your Health Activism, or your life. Now tell us a lie. Do you think we will be able to tell the difference?
#1. I participated in Locks of Love, donating thirteen inches of hair.
#2. I have a tattoo in memory of my parents.
#3. I have been caught in the middle of a hurricane.
#4. I have visited eight countries in Europe.
Can you tell which is the lie?
Don't peek yet, that's cheating!
OK ok ok
The lie is #2 - The truth is that I do not have a tattoo - yet. I am very interested in getting one but cannot make up my mind what I want or where I want to have it placed. Since they are super-permanent, I don't want to get anything until I can make up my mind. Plus I'm a little scared how my condition/body will respond to the pain/procedure of getting tatted.
Nov. 13. Evolution. Write about how being a patient or caregiver has changed you. How have your goals changed? Have your values changed?
I was always the one helping take care of everyone while I was growing up. I assisted Mom with babysitting, by either changing diapers, giving snacks, helping younger kids with their homework, etc. I also did a lot of work with the animals on the farm, feeding and watering cattle, slopping pigs, etc. So when Mom and Dad became sick, I stepped into that role of caregiver without a second thought. I don't regret it, because it taught me a lot about myself and the perspective of others in that role. Professionally I work with adults who have mental or physical disabilities... It's that caring nature coming out again.
Once I was diagnosed with my condition, it gave me a shocking perspective that changed how I cared for others. It changed how I see different things, no longer is fatigue synonymous with sleepy. I know that sounds weird but for me it is the truth. Sometimes the fatigue can be so bad that I struggle just to do what I absolutely must do... but I'm not sleepy or sleep deprived. I'm just fatigued and my limbs are so heavy that lifting them sounds as unrealistic as lifting a parade of elephants with my bare hands... yet I do it, every single day. On those bad days, I have never been so thankful when they occur on the days that I'm off work.
I used to be an activity based person, bonding with others through actions, games, etc... Now I am much more conversation based. And the brutal truth is that that is becoming more and more text based. Its not that I'm hiding from the world, but with my asthma the way that it is, actual conversation can be difficult to manage sometimes - especially when the pain and fatigue is at its worse.
Nov. 6. Say WHAT?! What’s the most ridiculous thing you’ve heard about your health condition? Was there any context? What did you think at the time you heard it – and what do you think of it now?
The very first Rheumatologist that I had an appointment with made a shocking discovery of my 'situation' (as he called it). I was in my mid-20s and unmarried, no children, and working full time. I was having a great deal of "residue pain" from a severe case of the shingles (that I developed two years before). This Doc explained that my 'situation' was because I was single and did not have any children yet. That my body was 'wanting to become a mother and spend my time at home caring for children and a husband' instead of 'wasting my life at a job'. -Spoiler Alert- He was a bit of a jackass, and I told him as much! That's when he enlightened my poor not-made-for-thinking feminine brain to the theory of my body rebelling against me in this way because I was denying myself what 'should matter most'... At that point I wasn't angry at him anymore, I wasn't offended or insulted... I felt so sad for him and his family... and God help, his children.
Of course I've also had other wild zaney diagnosis/opinions given to me, but this one was definitely the one that leapt to mind when I seen this blog prompt.
Getting back on topic here, after all of my crazy appointments I can definitely appreciate the episode of The Golden Girls in which Dorothy has Chronic Fatigue Syndrome, Sick and Tired, Season 5 Episodes 2 and 3.
A friend posted this on Facebook this morning, and ... it has really touched my heart.
When my daughter was a toddler, I used to take her to a park not far from our apartment. One day as she was playing in a sandbox, an ice-cream salesman approached us. I purchased her a treat, and when I turned to give it to her, I saw her mouth was full of sand. Where I had intended to put a delicacy, she had put dirt.
Did I love her with dirt in her mouth? Absolutely. Was she any less of my daughter with dirt in her mouth? Of course not. Was I going to allow her to keep the dirt in her mouth? No way. I loved her right where she was, but I refused to leave her there. I carried her over to the water fountain and washed out her mouth. Why? Because I love her.
God does the same for us. He holds us over the fountain. "Spit out the dirt, honey," our Father urges. "I've got something better for you." And so he cleanses us of filth; immorality, dishonesty, prejudice, bitterness, greed. We don't enjoy the cleansing; sometimes we even opt for the dirt over the ice cream. "I can eat dirt if I want to!" we pout and proclaim. Which is true—we can. But if we do, the loss is ours. God has a better offer.
Thank you Tae Travis for sharing this!
Nov. 3: My Mascot! Give your condition, community, or self a mascot. Who is it? What do they represent? What is their battle cry?
I read a story a dozen years or so ago that has really truly stuck with me. I have clung to it since my diagnosis and it has gotten me through a lot...
The Butterfly's Struggle
Once a little boy was playing outdoors and found a fascinating caterpillar. He carefully picked it up and took it home to show his mother. He asked his mother if he could keep it, and she said he could if he would take good care of it.
The little boy got a large jar from his mother and put plants to eat, and a stick to climb on, in the jar. Every day he watched the caterpillar and brought it new plants to eat.
One day the caterpillar climbed up the stick and started acting strangely. The boy worriedly called his mother who came and understood that the caterpillar was creating a cocoon. The mother explained to the boy how the caterpillar was going to go through a metamorphosis and become a butterfly.
The little boy was thrilled to hear about the changes his caterpillar would go through.
He watched every day, waiting for the butterfly to emerge. One day it happened, a small hole appeared in the cocoon and the butterfly started to struggle to come out.
At first the boy was excited, but soon he became concerned. The butterfly was struggling so hard to get out! It looked like it couldn’t break free! It looked desperate! It looked like it was making no progress!
The boy was so concerned he decided to help. He ran to get scissors, and he snipped the cocoon to make the hole bigger and the butterfly quickly emerged!
As the butterfly came out the boy was surprised. It had a swollen body and small, shriveled wings. He continued to watch the butterfly expecting that, at any moment, the wings would dry out, enlarge and expand to support the swollen body. He knew that in time the body would shrink and the butterfly’s wings would expand. But neither happened!
The butterfly spent the rest of its life crawling around with a swollen body and shriveled wings. It never was able to fly…
As the boy tried to figure out what had gone wrong his mother took him to talk to a scientist from a local college. He learned that the butterfly was SUPPOSED to struggle. In fact, the butterfly’s struggle to push its way through the tiny opening of the cocoon pushes the fluid out of its body and into its wings. Without the struggle, the butterfly would never, ever fly. The boy’s good intentions hurt the butterfly.
As you go through life, keep in mind that struggling is an important part of any growth experience. In fact, it is the struggle that causes you to develop your ability to fly.
So for this reason, sometimes when I am struggling with my illness - I imagine it is a cocoon that I am pushing through... and that I will emerge a beautiful butterfly.
So my battle cry? Every struggle is a lesson, but its up to you to learn it.
Nov. 2. Little Engine Post
Write 3 lines that start with “I think I can…”
Then write 3 lines that start with “I know I can…”
1) I think I can learn to enjoy my life again.
2) I think I can find a way to dream again.
3) I think I can learn to love myself again.
1) I know I can accept that I cannot change my family's view of me and my health.
2) I know I can be the one to make me happy.
3) I know I can still live the life I want to live - on a certain level.
A lot of this is where I am still reeling from the loss of my parents. Over the last few years I really defined myself by my role in taking care of them... and now that they are gone... I'm very lost... And my health is displaying that. Or maybe this is the result of me ignoring my health for so long because my priority was caring for them? I'm not sure... but I need a change - desperately... Sometimes it feels like my life depends on it.
Nov. 1: Favorite Fridays! Tell us what your favorite health apps are and how people can find them. (Oh this is a good way to start the blog challenge!)
I'm not 100% sure that my answers are what WEGO Health is looking for, but the applications that help me the most are:
- Awesome Cal - Syncs with Google Calendar so I can keep up with appointments/meetings/etc. This app helps me tremendously as I am struggling to juggle a career, my diagnosis, and family events. There is a free version available, but I did upgrade to the $4.99 professional application. It also syncs with my Google Tasks - so I'm less likely to forget something. :)
- Office-Fit - Helps me think of new ways to work a little fitness into my spoonie life. This app even has an option for being at my desk - which includes sitting versions of the activity we all need.
- iPharmacy - Answers all of my med questions when my foggy brain can't think straight
- WebMD - I love WebMD and adore their app!
- Walgreens - I can refill my scripts by scanning the codes, so much easier than trying to punch in the script numbers on days that my fingers/hands ache.
- Sleep Pillow - Whenever I am stressed or irritated, this helps me relax - no matter where I am! I plug in my earbuds and can listen to the ocean waves, a rain storm, jungle noises, or even a generic white noise. Plus it's free!
- MyFitnessPal - I don't always pay attention to my caloric intake, but I do watch my carbs very closely. MFP provides excellent nutritional information for almost everything I like!
- iHeartRadio - Love Love Love - Everyone needs a little music! I love love love this app. I really like how the upgrade includes a selection option where you can customize your music for whatever you are doing (ie: working out, relaxing, paperwork, etc).
All of these apps can be found at the iTunes Store. Each one is free - except for the upgrade I purchased for the AmazingCal app - but they do have a free version.
Note: Yes I have an iphone so these are iphone apps but there are android counterparts for most of them! :)
