Happy Holidays And Epic Giveaways

Hey, everyone!  I figured I would post one last time before I go off the grid for the holidays. 

I’m excited to share our holiday card this year, our first annual, for those who didn’t get one via snail mail. 

I’m also super excited to announce that many of the products/companies I highlighted in my holiday gift post came through with some great giveaways for my readers.  

Here’s what I’ve got:

1.       A signed, personalized copy of “So Young” by Daniel Malito

2.      A pillfold from Sara Gorman

3.      A Sabi Folio pill holder

4.      An E-certificate worth $35 from Road ID

So here’s how the giveaway is going to work: To enter, comment on this post, share which item you would like and why.  The contest is open until January 10, 2014 at 12 a.m.  Winners will be randomly selected, and will be announced in my first post of 2014.

Again, Happy Holidays, everyone.  Catch you all in 2014!

Vote For Me For Your Favorite Disruptive Woman In Health Care

I created a video for a contest by Disruptive Women In Health Care.

Now’s your chance to vote for your favorite disruptor.

I would be honored if you voted for me. 

Follow the link below, click on my name, and like and share the video:  

http://www.disruptivewomen.net/vote-today-on-your-favorite-video/

The video with the most likes, shares, tweets, and pins wins a $400 Amazon gift card, which would really help me with my books for school for next semester.

The last day to vote is December 18^th, 2013.

Some Of My Favorite (Chronically Ill) Things For This Holiday Season

I had intended to post this before the unexpected death of my grandfather, but didn’t get the chance.  So I am posting it now so it is hopefully still timely.

With Chanukah starting the day after Thanksgiving this year, it was a rush to get gifts, and I was short on both time and ideas.

But I did have some time to brainstorm and come up with some great gift ideas for yourself or someone you know who has a chronic illness.  

So here goes:

12. Miamica inner booties (http://miamica.com/Shoe-Stuff/)

This isn’t explicitly chronic illness related, but it is winter related.  I found these inflatable inserts for boots.  They keep your boots shapely.  The thing I like about these, besides the cute design, is that they keep the natural shape of the boot rather than stretch them like some wood or plastic inserts might. 

11. EOS lip balm and hand lotion (http://evolutionofsmooth.com/)

 This also isn’t explicitly chronic illness related, but it is winter related.  I’ve been wanting to try EOS lip balm for awhile because I’ve been intrigued by the circular design.  I’m glad I did.  The lip balm tastes great, is very moisturizing, very easy to use, and comes in a pot that clicks sealed so you don’t have to worry about it coming open in your purse.  I also tried their hand lotion, which has it’s own unique packaging, and it smells great and is lightweight on.   

10. Fingerless gloves (http://www.urbanoutfitters.com/urban/index.jsp)

I’ve had a pair of fingerless gloves for awhile, but just rediscovered them recently and they are really handy for cold hands when you are inside, especially working on a computer.  Can help mitigate Raynaud’s a bit.    

9. Oxo Good Grip products (http://www.oxo.com/)

I was pretty sure that OXO was an Arthritis Foundation approved product/company.  I am not sure if that is true anymore, but a key component of their products is that they are based on universal design.  My boyfriend’s dad has this great can opener that is so easy for me to use, and of course, it’s an Oxo.

8. Miamica pill holders (http://miamica.com/Pill-Cases/)

These are super cute.  I have a pink shiny one that says “Take a Chill Pill.”  Unfortunately, they aren’t super arthritis friendly.  They are pretty hard to open, so I don’t use mine that much.  With the strong plastic and the zipper, though, your pills are super secure.  But if you are chronically ill and don’t have problems with your joints, these are great because they are so adorable.  Varieties include the sayings, “My Pills”, “Happy Pills”, “Crazy Pills”, “Happy Hour”, “Chill Pill”, “Love is the Drug”, “Stay Calm”, “Take a Chill Pill”, “Hangover Drugs”, and “Drugs”.  These are also great for people who aren’t chronically ill.

7.  Apple IPad Mini (http://www.apple.com/ipad-mini/)

My boyfriend bought me an IPad Mini for getting my PhD.  I didn’t really know I wanted one until I had it.  Honestly, if I could do everything on it and ditch my computer, I totally would.  I can do almost anything on it.  And it is light weight, which makes it great for school and traveling.  The touch screen is super great if you have joint problems, as it’s much easier on your fingers and hands than regular computer keys.

6.  Books by and about the chronically ill

I can never read enough books by and about chronically ill people.  On my list to read over winter break:

“Battle for Grace” by Cynthia Toussaint

“Chronic Resilience” by Danea Horn

“Knocking on Death’s Door” by Katy Butler

“So Young” by Daniel Malito

I am sure there are others I am missing, so if you know of others that are relatively new, let me know.

5. Lauren’s Hope (http://www.laurenshope.com/)

This is an old favorite.  I’ve had several of Lauren’s Hope medical ID bracelets.  I like the fact that these are pretty, and while they don’t look like a traditional medical alert bracelet, they are noticeable enough.  Although I may have found a new favorite – see number 2. 

4. Sarah Gorman’s Pillbags (http://www.pillfold.com/)

This is another old favorite, but since I blogged about these, Sara has created more patterns of both her Pillfold and Pillpouch.  These are great for travel, really handy, and stylish, to boot.     

3. Sabi (http://sabi.com/)

I don’t actually have any of their products, but these pill cases are pretty ingenious.  I especially like the carafe that doubles as a pill case and the streamlined pill cutter and crusher.

2. Road ID (http://www.roadid.com/Common/default.aspx and https://www.myroadid.com/)

 So these aren’t as cute as Lauren’s Hope, but if you get the interactive version, you can put all of your information online and it can then be accessed by first responders in an emergency.  It allows you to update information constantly, so rather than having to get a new bracelet every time something changes, you simply access your account online and change whatever needs to be changed.  This is totally a case of function over form, but the silicone band comes in a variety of fun colors.  And there are other band types to choose from, as well. 

1. Prepara iprep (http://www.prepara.com/kitchen-gadgets/iprep)

This is something that I am totally obsessed with right now.  Its main purpose is as a stand so you can use your IPad when you are cooking.  But it is so much more than that.  It is a stand that allows me to do reading for school off of my IPad without having to hold it, can be a stand for your phone for hands free talking, and you can watch movies and stuff on it, too.  It is really great, and perfect for extra bad joint pain days.  I got mine at Barnes & Noble, but Amazon sells it, too, or you can purchase it directly from Prepara.  Definitely worth it if you have an IPad.

***

I hope that this has given you some ideas for gifts for yourself or others this holiday season.

I would love, love, love it if this post makes it to any of the companies I’ve highlighted, that they might donate a product or two for a giveaway.  So Miamica, EOS, Urban Outfitters, Oxo, Apple, Amazon or Cynthia Toussaint, Danea Horn, Katy Butler, Daniel Malito, Lauren’s Hope, Sara Gorman, Sabi, Road ID, and Prepara, if you are out there reading, please help me offer some great holiday giveaways to my readers.

Reflections On Life, Love, Loss, and Family

My grandfather – Zaydie –passed away last week.

So I jumped on a plane and flew back to Michigan for the funeral.

To understand the importance of my Zaydie, I took only a small carry-on bag.  I have never been a light packer.  When I went on a trip with my grandparents about 10 years ago, we were away for 10 days and I think I took about eight pairs of shoes. 

But when it came down to it, I couldn’t really even think of what to pack.  I just wanted and needed to be with my family.

The last death in my immediate family was when my mother’s father passed away 20 years ago, and I don’t remember much of that.

The response toward my Zaydie’s death was overwhelming.  Because he fought in World War II and had three Purple Hearts and a Bronze Star, the Jewish War Veterans honored him with an honor guard, the largest anyone present had ever seen.

My Zaydie was a quiet and humble man.  He didn’t have an easy life, but he made the most of it, and always had a smile on his face.

The last time I saw him was the day before I moved to New York, and one of the hardest parts of moving was leaving my elderly grandparents, knowing that anything can happen.

The last time I talked on the phone with him, he said I love you, which he didn’t say often.  And I almost started crying and I had to get off the phone.  Maybe he knew.  Maybe I knew.  And maybe, somehow, we both knew.

The last several years had been difficult for him.  He lost many beloved friends and family members.  He had a bad reaction to anesthesia during a hernia operation, and he never quite came back from that.

The last stint in the hospital was from the Sunday before Thanksgiving to Thanksgiving Day.  He had a great week celebrating Thanksgiving and Chanukah with my family, when he was home.  My mom had told me a few hours before he died how much better he was doing. 

He and my grandmother were leaving the house and he collapsed and that was it.

He and my grandmother were married for almost 67 years. 

Though he was 91 and lived a full life, did not make this loss any easier.

It’s easy to feel robbed and cheated, to feel that even though he had 91 years – and I was so lucky to have three living grandparents for 28 years of my life – that we didn’t have enough time, that his death happened too fast, that we didn’t really get a chance to say goodbye. 

There is a hole in our hearts and lives that cannot be filled.

Once again, I am reminded of what is most important in life, and that is the people in our lives and the relationships that we build.  It’s not the things we have, but the company we keep.   

My aunt had this custom bobblehead - it looks just like them - made for my grandparents and it was supposed to be for their anniversary, December 22.  Because my grandfather passed away, we gave it to her Friday night.   

Am I Cheating On My Rheumatologist?

Well, since my next question is which one, I guess that answers my question.

So here’s the thing.

I have an appointment in August with my rheumatologist back in Michigan.  We made it for a year after my last appointment with him, at his suggestion.

But now I am seeing my new rheumatologist.

But the other day my old rheumatologist’s office left me a message that my lab work is due.  The last time it was due, I happened to have just had an appointment with my new primary care doctor, so I forwarded those results to my old rheumatologist. 

But now I don’t know what to do.  I am not sure where I would even go to get the labs done, and my latest labs from my new rheumatologist don’t include the labs that my old rheumatologist wants.

Is anyone else exhausted?  I’m exhausted.  This is an exhausting situation. 

I have a soft spot in my heart for my old rheumatologist because he was the one who diagnosed me.  We’ve been through a lot together.  He’s the longest “relationship” that I’ve ever been in with a member of the opposite sex.

But my new rheumatologist is a breath of fresh air.  She is young.  She is thorough.  She believes that prednisone is not a long term solution. 

So I am stuck between a rock and a hard place, and I feel slightly selfish that I am dangling myself in front of not just one rheumatologist, but two. 

My old rheumatologist didn’t just want to cut me loose, and wanted me to have the ability to see him again if I needed to.  But I guess I forgot the responsibility that comes with it, which is blood work every two or three months. 

I don’t even know how to broach the subject with my new rheumatologist.  Hey, could you order these labs that my old rheumatologist wants?  Awkward!

So do I cancel my August appointment with my old rheumatologist and effectively cut the cord? 

Or do I try and keep up the charade in the hope that no one will notice?

This is a tricky situation because of the fact that I moved, and that’s the reason I needed to find a new rheumatologist, not because I was doctor shopping for a new rheumatologist for the sake of it. 

 
It’s amazing how tied and beholden to we can feel to our medical team. 

I guess that’s why it’s so hard to let go.

Operating With A Serious Spoon Deficit

Lately I have been operating with a serious spoon deficit.

For those who don’t know, the idea of the spoon theory is that someone with a chronic illness has a limited number of spoons that they can use each day, and once those spoons are gone, they pretty much can’t do anything other than rest.

These days, I have lists of things I have to do that never all seem to get done when I want to get them done. 

People without chronic illness don’t understand, and they don’t realize that it literally means I could be out doing something and suddenly feel sick and like I have to lie down.

I’m running on fumes.  Less than fumes.  Not even on reserve.  My reserves are gone.

I can literally be stopped in my tracks.    

And it has caused me anxiety when I am not close to home but realize I am running low on spoons.  How will I get home?  Will I have to find a cab instead of the subway or bus?  Can I keep from getting sick, regardless of the mode of transportation?  Can I walk the half a block from where I get dropped off until I get into the apartment building?  

I don’t have copious amounts of energy.  I have to pick my battles wisely, and sometimes bow out of battles altogether.    

And this state of affairs bothers me a lot.  I don’t want to have limitations.  I don’t want to say no to things.  But I don’t have a choice. 

For most of us with chronic illness, our days are variable.  Some days are good – we have more energy and less pain – and some days are bad.

Some days all my spoons get me is out of a bed, a shower, and breakfast.  Some days – rarely – it’s like I am my healthy self again. 

For about the past two months, I constantly feel like I am coming down with something.  I get a cough, my throat hurts, I spike low-grade fevers, I get these weird skin rashes.  This is my immune system telling me it’s time to take a break.  But I can’t really.  So I buck my immune system, but I can’t buck my lack of spoons.

When the spoons are gone for the day, they’re gone.  And I can’t bank them from days when I don’t use that many.  It’s always a finite number of spoons. 

Say I start the day with 12 spoons.  On a day that I have school, my spoon count would look like this:

Get up – 1 spoon

Eat breakfast – 1 spoon

Get dressed – 1 spoon

Bus – 1 spoon

Subway – 1 spoon

Train – 1 spoon

Walk to class – 1 spoon

Class – 1 spoon

Eat lunch – 1 spoon

Class – 1 spoon

Class – 1 spoon

Walk to train – 1 spoon

Train – 1 spoon

Subway – 1 spoon

Bus – 1 spoon

Dinner – 1 spoon

Get ready for bed – 1 spoon

Count that.  That’s 17 spoons right there when my allotment for the day is 12.  Now wonder I am so exhausted all the time.

It’s stunning for me to realize how little my body can actually handle.  But it makes total sense…to me…at least…

It’s easy for people who aren’t chronically ill to be judgmental and use terms like lazy, aloof, or uncaring.  But those characterizations couldn’t be further from the truth.  Like I said, I would give anything to do everything I need to everyday and not have to take time off after a particularly hard or busy day. 

But that’s not the reality.

If you are not chronically ill: How much of your day would you actually get done if you only had 12 spoons and every activity costs you a spoon?