Looking Back – Day 107 – Home Sweet Home

Today is Day 107 of the Art Apple A Day Retrospective – for information on the project click here.

Day One Hundred Seven – January 15, 2010

Looking back 10 years ago today…

I didn’t cancel my plans to celebrate a friend’s birthday!!!

This was a success especially after an extremely long day of travel. What so many don’t understand about one of the big tolls on the lives of people trying to manage a life with a painful disease is that plans are tricky things. We have the best intentions and sometimes we can mentally push through and attend the event but there are times when we just don’t have the strength to push through the pain.

I remember attempting to be at my cousin David’s wedding in L.A. before I was diagnosed and being in so much pain I couldn’t function at all. I was there physically but that was about it. Thankfully the wedding and reception were in the hotel we were staying in so I was in bed right up to the point they walked down the aisle. I vividly remember sitting holding Doug’s hand and barely keeping the tears from falling. The threatening tears were from excruciating pain and I was sad I couldn’t enjoy the happy family time but it was also the unspoken deep fear that I had no ability to control my life that felt ripped away at such a young age. The day before my family pushed me around an amusement park in a wheelchair because I was trying to be ok for the wedding.

And, in one moment of trying to be normal and enjoy the day, I went on a ride. That ride sent my neck into one of the worst flares I ever had.

And so there I sat for 30 minutes gritting my teeth, squeezing Doug’s hand, and all I could really think about was getting back to the room to lay down take the strain off my neck and knowing that when I did, the pain would still be there but at least I’d be able to release my jaw and not be around people and have to smile. I missed all of the reception except for about 15 minutes to eat a bit of dinner and have a dance with Doug. A dance that was painful. How horrible these memories are. I don’t want to relive them but I want to document them and to share the horrible moments right along with the wonderful moments on other posts here and how at this point in time I’m thriving!

Those years with moments that are forever etched in my mind are many. This is just one story. The “crisis years” as I call them are the years before a diagnosis and they are filled with living this way. Even as we find our way to an eventual diagnosis and hopefully some effective treatment, these years were so challenging that they tend to scar deep trauma into our minds and ability to move forward. We are in a constant state of the “what ifs”

What if I do this activity and I end up in pain?

It taints so much. It feels like loss, over and over and over. I’ve been fortunate to have such great success with the biologic anti-TNF medication called Remicade. I’ve had 14 years of doing quite well and getting back to a somewhat normal life but somewhat normal still includes concessions, planning, rest, flares, skipping events, and missing out on doing some things that I want to do that physically is a risk I’m not willing to take because of those moments and memories like my cousin Dave’s wedding. If you’ve never experienced that level of pain count yourself very very lucky, it is life changing.

So, if I cancel plans, there is a reason and I wish it weren’t the case. And if I am able to be there I might be fine or I might we struggling with pain that I’m just doing my best to manage. You can ask, but you don’t need to either because I really just want as normal a life as possible. If you know me well, you can see how I am by just looking at my eyes. The answer is there… if you look.

On this day 10 years ago – I was home, and I was there!!!

To see my original Day 107 post ~ Home Sweet Home ~ from 10 years ago click here or on the image above.

And the story will continue tomorrow…

Looking Back – Day 106 – Travel Day Tips

Today is Day 106 of the Art Apple A Day Retrospective – for information on the project click here.

Day One Hundred Six – January 14, 2010

Looking back 10 years ago today…

Travel days… they are a lot easier these days but I’m currently flaring due to a reduction in my Remicade dose due to weight loss and travel right now would be more strained. In the past travel filled me with anxiety and dread. Why? Pain.

I just did a simple search on my blog to see what I’ve written about pain and interestingly – not much came up. Did I really spend a year raising awareness about A.S. and not discuss it that much? Or… is my site in a desperate need of reindexing? I know it needs better tags and categories but it’s the dullest job on the planet so I keep putting it off. Today I see it needs to happen so that I don’t have to write experiences over. I’m trying to share about this disease but not live in the past trauma and pain. It’s a difficult balancing act for sure.

Since I’m at a loss for finding a past post to link to – here are some tips for travel.

9 Tips for Travel when you have a painful autoimmune arthritis.

1. Rest Up Before You Travel: Bank some spoons because you’re going to need them.

2. For The Love Of God Wear Sturdy Broken In Shoes: There is a lot of walking through airports and often at a quick pace so comfortable shoes are a must.

3. Invest One Of Those Travel Neck Thingies: I have a couple of these. The newest ones you can find have memory foam and a snap to keep the thingy closed tight around your neck which is awesome to give you the ability to rest even when sitting upright. I won’t travel without one!

4. Have your pain meds handy: Keep them is an easily accessible place and not in the overhead compartment.

5. Take A Pillow: For long flights a small pillow for putting at the small of your back is extremely helpful. The seats (especially the discount carriers) are horrible and have zero back support.

6. Voltaren Gel Is Your New Best Friend: If you’ve never tried Voltaren Gel I would run out and get some asap. It is now over the counter! It’s basically ibuprofen in a gel and rubbing it on to a troubled spot gets relief faster than taking a tablet internally in my experience.

7. Head Phones With Calming Music On Your Phone: That baby behind you is about to start screaming and your fibro is now on level 10 so noise is painful. Blocking it out some is imperative.

8. Travel With Someone If Possible: If I travel with my husband or brother, it’s just easier and they are tuned into my needs and so helpful with everything.

9. Travel Light or Check Bags: The less you have to carry the better. I almost always check my bags and carry on a backpack that is as light as possible. If it needs to be heavier, I have a smallish backpack that has a waist strap to carry most of the load on my hips and not put strain on my shoulders and neck.

All of these things done alone are helpful but put them all together and travel is much, much smoother and gets you to your destination in better shape. If you have a travel tip, I’d love to hear it and add it to the list!

To see my original Day 106 post ~ Travel Day ~ from 10 years ago click here or on the image above.

And the story will continue tomorrow…

Looking Back – Day 105 – Heartfelt

Today is Day 105 of the Art Apple A Day Retrospective – for information on the project click here.

Day One Hundred Five – January 13, 2010

Looking back 10 years ago today…

I’m not sure what was happening in the world or in my life on this day ten years ago but I’m praying and thinking about humanity today as well. I sent a couple of text messages to my family thread last night. One an image of a current piece of art work and immediately following a meme about current events. My Mom responded, “Beautiful and awful next to each other.” and I guess that pretty much sums up life.

This is why we need to capture joy wherever and whenever we can. Sending you all a heartfelt warm, soft, sway back and forth, virtual hug.

To see my original Day 105 post ~ Heartfelt ~ from 10 years ago click here or on the image above.

And the story will continue tomorrow…

Looking Back – Day 104 – Choose Tolerance

Today is Day 104 of the Art Apple A Day Retrospective – for information on the project click here.

Day One Hundred Four – January 12, 2010

Looking back 10 years ago today…

I’ve had a few crazy synchronicities with my posts the last week and it’s kinda freaking me out. Or, is life just that repetitious and we don’t recognize it? Things to contemplate on this cold and dark winter day.

To see my original Day 104 post ~ Choose Tolerance ~ from 10 years ago click here or on the image above.

And the story will continue tomorrow…

Looking Back – Day 103 – Crown Of Apples

Today is Day 103 of the Art Apple A Day Retrospective – for information on the project click here.

Day One Hundred Three – January 11, 2010

Looking back 10 years ago today…

It was a day with just an apple and no post. I occasionally didn’t write much with my daily apple. It was always because I just didn’t have the energy or brain power. I’m feeling that way tonight as well. I am best the first half of the day – my body tires as the day wears on – so I’ve mostly been posting as I drink my morning coffee. My mind is sharper and it’s a fun way to start my day. Today I fired up my laptop (it’s by my bedside because that is where I have my morning coffee) and I hadn’t prepared the image for today’s post. I’ve been trying to get two weeks done ahead of time but that is a two hour project believe it or not so over the holidays it hasn’t been high on my to-do list so I ran out of made ahead images that I’d stored in my dropbox. Not a big deal but it threw off my routine. Then I went to lay down a bit before dinner to rest my back for a bit and for some reason the images hadn’t synced to my dropbox yet so I couldn’t get to them from my laptop.

And, then I completely forgot all about it! Ten years ago the idea of forgetting to post my daily apple gave me nightmares. Seriously! I never forgot but on day 365 it was close – I posted just a few minutes before midnight. (more on that in a few hundred more days)

And 9pm I turn into a pumpkin. – if you ask Doug, it’s really 8pm but I didn’t want to sound totally lame.

So I’m going to say goodnight and hope things work out better tomorrow! On a hugely positive note – I had a great day in my studio! I set an appointment with my art photographer for January 25th so it has me working furiously to finish up a number of half finished pieces. Nothing like a deadline for motivation! To see what I’m working on you can check out my Instagram where I post the goings on in my studio.

To see my original Day 103 post ~ Crown Of Apples ~ from 10 years ago click here or on the image above.

And the story will continue tomorrow…

Looking Back – Day 101 – Intro To Apple Art

Today is Day 101 of the Art Apple A Day Retrospective – for information on the project click here.

Day One Hundred One – January 9, 2010

Looking back 10 years ago today…

It has been another long day. Mostly in a good way but I’ve had computer issues. Posting at 9:30pm isn’t optimal for me – I function best in the morning which is when I usually write up my reflections and post my apple. Tonight my brain is more foggy than usual so I’m happy that 10 years ago I was running into the same issue so there isn’t much to spark my memories tonight and I can just say hello, hit publish on today’s post, and call it a night.

Goodnight all!

To see my original Day 101 post ~ Intro To Apple Art or Intro To AS ~ from 10 years ago click here or on the image above.

And the story will continue tomorrow…

Looking Back – Day 100 – A Window To My Apple

Today is Day 100 of the Art Apple A Day Retrospective – for information on the project click here.

Day One Hundred – January 8, 2010

Looking back 10 years ago today…

I’m smiling.

Actually, I have tears running down my cheeks. Memories are powerful things and these posts are a time capsule for me and my family. My grandmother kept a written daily journal and I thought it was neat but now I know the power of documenting your life. Facebook and Instagram are wonderful for that but it isn’t your inner thoughts and a dialog of what was really going on. Oh the things we don’t share! This retrospective makes me want to look back on my apples in another 10 years…

Today’s post brings back the memories of a road trip my Mom and I took starting 10 years ago today. We still laugh and talk about this first day of our drive north and that moment my Dad messaged us from Tokyo (the juxtaposition of him being on the other side of the world and we hadn’t made it out of Florida just makes us laugh)!

The tears are for today and thinking about my Mom – oh how I love her! She is battling stage IV metastatic melanoma. Her bravery and resiliency have always inspired me but now I am in awe. And today’s apple is a very large window to me and my current life too. Yesterday’s apple was so apropos and here we are again with one that seems to be life circling around.

To see my original Day 100 post ~ A Window To My Apple ~ from 10 years ago click here or on the image above.

And the story will continue tomorrow…

Looking Back – Day 99 – Tie Dye Peace Apple

Today is Day 99 of the Art Apple A Day Retrospective – for information on the project click here.

Day Ninety Nine – January 7, 2010

Looking back 10 years ago today…

Seems talk of Peace today is extremely appropriate. This apple coming up ten years later on a day we all need to take a collective breath and find inner and world peace is what I consider kismet, grace, and divine coincidence. Wishing us all Peace.

Namaste. Peace. Paz. Pace. 和约. Vrede.

To see my original Day 99 post ~ Tie Dye Peace Apple ~ from 10 years ago click here or on the image above.

And the story will continue tomorrow…

Looking Back – Day 98 – Michael, Michael, Motorcycle

Today is Day 98 of the Art Apple A Day Retrospective – for information on the project click here.

Day Ninety Eight – January 6, 2010

Looking back 10 years ago today…

A personal apple for my older brother Michael on his birthday! Love you Mike!!!

I’m very blessed to have such a wonderful and supportive family. One of the rotating photos in my website header is of the Apple A Thon finale to my year of apples. All my family attended. I’m still blown away by their support. So yes, I celebrate them on their birthdays here! You can see how close I am with my parents and brothers on my personal/public Instagram – family support makes all the difference in managing a life with chronic illness.

Family is also good friends or our AS Community. My circle of AS friends is amazing. I encourage anyone looking for more support to find a web forum or social media space to meet new virtual friends. In time the relationships grow and are imperative in my opinion. It may seem like a difficult task to meet people online but it’s like anything important, it will take time but be worth the effort and if you start today, I guarantee you will have found a supportive loving circle online by this time next year!

To see my original Day 98 post ~ Michael, Michael, Motorcycle ~ from 10 years ago click here or on the image above.

And the story will continue tomorrow…