Friday, July 20, 2018



What’s In Your Purse??

 Today, I had a very busy day.  As I was getting ready to leave, frantically searching for something that should have been in my purse, it occurred to me that the item I was so desperately seeking for was not something most people would think twice about.  I was running around looking for mouth spray. Not the kind you use for fresh breath, but the kind that gives you moisture so you can keep talking to people without sounding like a drunkard. And this got me thinking: what else do I carry in my purse as a chronically ill person that others who are ‘normal’ do not?
    Well, what happened next was an internet call for people to empty their purses and photograph the contents.  The results not only show that I probably need to switch to an industrial strength material for my shoulder bag, but that everyone has something stashed away that is unique to them.


    Here is a cross section of what I found:



    My lovely niece sent me this.  I am mystified. She is the mom of a 3 year old.  Granted, I stated purses and not diaper bags or totes but this worthy of framing!  No snacks, toys, or crumbs. (I still have crumbs in my purse) Standard headache medicine and eye drops. Kleenex, lip gloss.  Now this girl is drop dead gorgeous, I expected a ton of make up in her purse (not that she needs any at all), but I just thought she’d carry some.  I truly have no clue how she does it. I was never this neat as a young mom. But it seems perfectly normal…










This is high school friend. And much more my level.  A bit messier with receipts, multiple pens, random bandaids and personal items for her kids (I mean this lady is an absolutely awesome mom! Of teenagers! Girls!).  Loose change that NEVER gets into a wallet (lol!) but is so helpful for that last minute item, or donut. And again, the random headache medicine… For the mom of two teenage girls, this is an amazingly small amount of stuff, right??  Or as the mom of boys, did I just carry way more first aid items? And tools? And balls?...
But nothing strange...





So, here’s another friend from the internet.  Her children are grown. In fact, one just got married!  Again, way neater than I’ve ever been, but still pretty standard.  Lip colors (she’s always trying out the new photo filter thingies on her FB avatar, so colorful lipsticks don’t surprise me), cash, keys, and glasses.  I know the measuring spoon and little bottle are salt! (Had to clarify…) And a medicine bottle. OK, the salt is a bit weird, but I carry it too, so…


    I look at these three purses and think these are all very organized women. They have it all together.  Maybe it’s just me. Am I incapable of achieving this? I’ll show you why I ask this…






This is my purse:


    Among the notables are 5 different types of eye drops and a mirror, 4 different lip moisturisers and lipsticks, 6 medications for my illness, mouth moisture spray, lidocaine patches, lotion or sunscreen, sunglasses, sunwrap, gatorade or water, things I squeeze when in pain, loose change, pens and notepad, perfume and spice powder for sweat scent, allergy meds, inhaler in the summer, my disability parking tag, salt in a bottle (unless I am wearing it), and an Ice pack I can beat up in the heat. (I have no clue about the random wooden ball that was in there today…)

    It’s overwhelming.  But I actually use most of this on a daily basis!  And the stuff I don’t use daily, I still need to carry in case I flare up.  But normal people have absolutely no clue why someone would have a sarong in their purse.  Or a bottle of salt. Ask the cashier who looked at me as if I were an alien as I was pulling stuff out of my purse looking for my debit card stating I had just used it at Starbucks.  But those things are necessities to me. They keep me upright in extreme sun, heat, and humidity. I just cannot be in the sun or the heat. At all. And my body needs more salt than a normal person.  So yes, I carry it. And sometimes, I pour it into my mouth. Straight.
    One thing you cannot see in my photo is the note I carry from my doctor stating that due to the extent and ramifications of my Sjogren’s, I must be allowed to carry my water and/or Gatorade everywhere.  To me, water and Gatorade are medicine.
    What I am trying to illustrate is the fact that for us, it’s hard.  On the one hand, we need extra stuff for our daily routines. Sometimes, we need it just to survive.  But on the other hand, we also want to be normal. To not have to worry about having it all with us or what will happen if we don’t.  I have another friend who, like me, is also chronically ill. She sent me a list of what she carries in her purse, but she chose not to photograph it. For her, the daily necessities have become much more intimate:

Water bottle, wallet, small meds case, large zipper type bag containing three smaller bags, one for sterile gloves, one for emergency urostomy supplies and the third for emergency colostomy supplies, tissues, hand sanitizer, cell phone and last chap stick that I always loose in the bottom of the bag. I also have a hand towel wrapped around a urinal in my purse.

    People who don’t always have to think about 75 things before they can leave the house don’t understand the importance of these things.  Looking over the contents of the photos sent to me, I know my friends understand some of my more common issues. I know they understand the pain and intensity of migraines and that surgeries and back pain have plagued some of them.  But I also know that most will never truly understand how vitally important most of the items I carry are. Like my water. I will turn around and make myself late if I forget it. Believe me, not everywhere supplies it and it is THAT important.

    So next time you are filling your purse, take note.  What goes in it says a lot about you. If you are someone who can create a masterpiece, like my niece, you are awesome!  But remember, if you end up behind, or cashing out someone like me, there may be a huge reason our purses look the way they do.  And that may very different than just being too busy or scatterbrained. There are approximately 133 million Americans who are chronically ill in the US, so give us a little leeway and understanding.  Because deep down, we really just want to throw it all out the bleepin window!

Tuesday, July 10, 2018



Love And Death With Chronic Illness   

   As anyone who has a chronic disease knows, it takes a huge toll on our body.  And though the disease itself may not be considered deadly, many of the effects of each individual disease are.  Consider how many autoimmune diseases affect the kidneys, heart, or lungs. Most of the time, those of us diagnosed don’t think of this too often in my opinion.  We KNOW about it, we just don’t THINK about it.
    But recently, a situation came up in one of my support groups that made me not only think about the major effects of my disease, but also the ways in which I might possibly handle these in the future.
    You see, someone in that group is waiting to die.  I do not know this person personally, but their posts have provided comfort and serenity in their gentle nature and wisdom through the years.  Now, this person has no treatment options left and the end could come at any time. Being heartbroken and don’t want to accept this news. But yet again, it is the wisdom and grace of this person and their response to their own situation has taught me much about love and dying in the world of chronic illness.
    The news came yesterday in a post on our group chat.  They outlined the basics of the disease progression and the steps that have already been taken to try to help including clinical trials.  But then, the tone changed. This person began to talk about their family and how they felt they were holding their family back and wished for them to go. To move on.  In the face of being told there were no life saving options left, they loved their family so much that they were more concerned about their family moving on.
    I cried reading that.  I honestly don’t know if I would have that same strength in me.  I think I would want my husband and my children with me at the end.  And I’m not sure I could tell them that it was OK to go and move on; to give them permission to start rebuilding their lives knowing mine was done.  Yet I know that I love them, but I do not know if I have the love or the courage that that takes: To face the inevitable alone so your loved ones are shielded from that pain.  
    Do not get this wrong, This is not a story of giving up.  It is a story of acceptance and facing the end with dignity.  It is about knowing where you are in life and where you have been and being at peace with both.  And isn’t that a great gift to yourself.
    We as chronically ill people sometimes forget to live in the moment.  We live appointment to appointment, test to test, and flare up to flare up.  It's hard sometimes to just be. I totally understand that to just sit and be in the moment opens us up to feel our pain acutely, but just maybe it opens us up to see our priorities.  Maybe we will see our lives in a different way and be less focused on the disease and its effects and more focused on something in our lives that brings us joy, even if we never realized it before.
    And it just may be in those moments we can find little bits of peace and the insight needed to move forward. Whatever that may mean for us.
    For me, that means deepening my bonds with my husband and kids.  I have let my pain and my disease get in the way of those relationships.  I can see that. Especially now that I am older and one of my kids has moved out to start his own chapters in life.   
    It also means I have to invest more in being me.  Not that I am being fake or hiding who I am. I just need to find opportunities to express who I am instead of waiting around for the opportunity to do so.  So I de-cluttered the house, got our kitchen utensils updated, and created a kitten rescue room. Now, I don’t feel guilty about resting-things are very neat now with less stuff, I can cook-which I love to do, and be more a part of the volunteering I love with less physicality.
    But the biggest effect of the decluttering of ‘18 is the fact that it lessened everyone’s stress and has given my family more time to spend together.  And being chronically ill, and knowing I have progressed recently, that matters. I may not be strong enough to tell them to go. To tell them I hold them back and they need to move forward.  But I am also not at the end of my treatment options. Where I am is in the middle and sick enough to see the reality of my limitations and possible future of needing more assistance than should be expected of them.  So I fixed it while I was still able. That is my expression of love.
    To my unnamed inspiration; may your upcoming journey be swift and as full of light and compassion as you are.  May your family continue to know the love and courage you have shown us all. You will be missed.