Thursday, August 23, 2018

What I realized About My Illness After The Sudden Death Of A Friend     

    I have a story to tell.  And it’s not just about me or my illness.  It’s about all of us and all of our illnesses and how they have made us view the world.  And it’s about one who was not one of us but who should have been and her illness and how it should change how we all view ourselves and our illnesses forever.

    I have been a part of several support groups for many years now.  For the chronically ill, chronic pain, incurables… However you want to label it, we are sick, we hurt, and we will never get better.

    I have read stories, written stories, and responded to stories.  We vent, we cry, we celebrate, and we lift each other up. After all, no one can know how bad we have it but those like us.  Spoonies, chargies, chronically ill, invisibly disabled, chronic pain patients that experience things “normies” never will. And we live our lives despite it, even though we are depressed and tired and hate the hand we’ve been dealt.

    That’s the point of the support groups right?  To commiserate? To ask advice or tell our stories to others who know our unique frustration with our lives and the havoc our diseases wreak on them?

    But what if I told you we have all missed the point and that every day we wake up and can feel our pain is another day we have to just be.

    You see, I just heard that the mom of my son’s friend died yesterday.  She died. This wasn’t just another middle aged soccer mom who ate too much fast food because her schedule was so overpacked with her kids’ activities that she couldn’t take a minute to do anything for herself, she was probably the exact opposite.  

    She could be spotted running every single day, and in Western NY, that is quite a feat.  She didn’t have an ounce of fat on her, ate clean, and to top it off, worked in healthcare.  Yet even someone like her could not avoid chronic illness. Hers was just relentless, fast and FATAL.

    Think about that.  While our conditions are relentless and painful and just plain awful to deal with, most do not carry the 80-90% fatality rate within 1 year of diagnosis that hers did.  She was the epitome of health yet she developed CJD (Creutzfeldt-Jakob disease), an extremely rare and highly fatal brain disease.  There are treatments but there is no cure.

    I have known this woman for 18 years.  I have been sick for 23 years. She was sick for only one.  ONE YEAR. Yet she is now gone from this earth and I am here, in pain, writing while trying to make sense of the unfairness of it all.  

    But that is exactly my point.  We who are chronically ill are often dealing with so many health issues one after another after another that it can be hard to even breathe much less smell the proverbial roses.  And even when we do get days when we feel good, it seems we have lists of so much stuff we have to do because our diseases usually prevent us from doing stuff that we’re really not smelling anything are we?  It’s no wonder we are filled with such negativity.

    And I am one of the worst offenders.  I have been deep in my disease lately.  I have been frustrated, achy, overworking myself and snarky.  All because I want to keep my house clean and wash my dishes but doing so exhausts me and makes me hurt.  Guess what, my friend lost the ability to even HOLD a dish months ago because her brain was essentially being eaten.   
    I have allowed myself to wallow in self pity more than I realized.

    I will never look at my illness in the same way again.  

    None of us should.

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.

Monday, June 25, 2018

A Different Kind Of Fear

    I have been chronically ill for over twenty years.  I have had time to get used to the idea that my illness has times where it is very expressive, called flare ups, and times when it is basically asleep, called remission.  For many years, I worked while I was ill. I raised a family. I ushered for my local theater and enjoyed being able to watch the broadway shows that came to town. But as my illness is progressive, that all gradually ended.  My kids are grown, I had to stop working, and the amount of walking and standing required to usher became too much.
    As far as chronic illnesses go, this is all to be expected.  I did my research. I knew what my disease could do. I applied for disability and eventually got it.  All I needed to do was refigure my life now as someone who was much more home based.
    At first, it was easy.  Obviously, I write, and as someone with two kids and a job, I had not made time for this pursuit earlier in my life.  (I actually am trained in creative writing, so allowing myself time to do it now is amazingly rewarding!) I also started doing our family tree.  Imagine my surprise finding out I am related to the woman credited with the invention of the striptease! As a way to get out of the house and give of my time, I became a kitten cuddler for a local rescue group.  (Yes, it is exactly as it sounds, I keep kittens calm during adoption events because they get scared.) Someone’s gotta do it!
    But even with all this preparation, there was something I didn’t realize.  Being home based is incredibly isolating. On the surface, that seems like a no brainer.  You are home. Not at work with co-workers and associates anymore, but home. And yes, there is the internet where facebook and instagram can keep you in touch and informed, but you are still alone.  And that is something I didn’t realize would end up causing me fear.
    You see, we usually consider fear as being about the unknown.  Pretty much every horror movie gets reactions from the notion of something unknown coming after us.  Maybe something is making noises down in the basement and we have no clue what it is. And because we are sick, it scares us because we think we are too weak to take care of it.  OK, this would have scared me before I was sick! But this is not the fear I just experienced. I experienced the fear of being alone. Literally.
    You see, although I do not live alone, during the day, I am alone.  My husband works and the one son who still lives at home also works.  And we only own two cars. So I do not have access to a vehicle in an emergency.  That’s not necessarily an issue in and of itself. If I was in a real emergency, I probably shouldn’t be driving, right?  But today, I also did not have access to my phone. The battery has finally decided to go completely and not hold any charge.  I have no way of communicating with anyone. And that scares me.
    The thought of being alone and in need of help due to my disease flaring up, or a fall, or another back fracture scares me more than anything else I can think of.  And this is something I never considered in all the time I have been home based. Truthfully, this should be one of the first things I thought of. Especially with no car available.  But it wasn’t.
    It will be now.  I will be getting a new phone, I am due for an upgrade, but I will also be asking about batteries.  I want to know how long an extra battery will last if I keep it in a drawer. I do not want to be in this situation again.  I want to be able to replace the dead battery with one that will at least get me through for awhile. You see, I also woke up with a migraine today.  Or a neuralgic headache. And I may have needed treatment. Without my phone, I could not get it. And that is the reason for my intense fear today.
    So from now on, disease management will include lots of stuff I hadn’t previously thought of.  I consider myself well prepared usually. After all, I do have 23 years under my belt with this illness.  But I guess everyone has a time when their disease is going smack them in the head and say I’m still smarter than you are.  And this is why I write. Maybe my experience will help someone from being stuck when they really need it.
    For now, I will just keep on learning.  And writing!

Friday, June 15, 2018

When Your Invisible Illness Becomes Invisible To You

    I recently had a trip to the emergency room.  One of many, I’ll admit. But this one was different as it could have been avoided had I known what was happening.  The problem is, I didn’t see it coming, nor did I actually have the tools to. You see, my illness, which is primarily invisible on the outside, had managed to hide the extent of its recent progression from me by making itself invisible on the inside. So I misread my abilities and ended up in the emergency room.

    I wish I could say that this is an uncommon issue with chronic illness. But I don’t think it is.  We go through periods of intense flare ups, when we experience the full measure of our symptoms from extreme pain to mind numbing fatigue to the loss of physical abilities such as walking.  But we also go through periods of remission, when our symptoms seem to disappear. Although we understand that they are only in hiding during these times, the fact that we feel normal gives us hope.  And many times, a false sense of ability.

    It is during these times that the idea of an invisible illness becomes two fold.  Just like the world cannot see our illnesses from the outside, when an illness it is in remission, we cannot feel it on the inside either. It becomes esentially invisible to us as well.  And given the fact that we are chronically ill, when we don’t feel physical symptoms, we are very likely to give in to the idea that we are more physically able than we actually are. Why wouldn’t we want to believe we are better when feeling crappy is the norm, even if its only for a few days.

    The problem is that we aren’t truly better.  We are still as sick as always, maybe worse. We just don’t feel it.  We have no pain and more energy than we know what to do with. And our instinct is to get stuff done.  It’s hard to sit still and rest when your body feels good and strong. Especially if it hasn’t felt strong in months.  And even though the most logical thing on earth is to let your body use this extra energy to heal more, most of us use it to do all the stuff we cannot do when we are symptomatic.

    In other words, we act like our illness is gone because it has become invisible to us.  Case in point: for many summers, I have been able to help out somewhatwith yardwork by sitting on my butt and using a sharp saw to cut off the suckers that grow off the base of our trees.  Yesterday, I set out to do that again. I was in remission and feeling strong. I stayed in the shade and it was breezy so I didn’t notice the heat. I also didn’t notice how much my recent health issues had actually deteriorated my abilities.  So while I completed what in my mind was reasonable based on years past and the fact that I was asymptomatic, after finnishing I became symptomatic quite quickly in the form of heat sickness, dehydration, and a major migraine event that landed me in the hospital.

    By all measures of my past, I did everything right.  But my illness was underground and not giving me the signals I needed to tell me I was overdoing it.  It was invisible to me. Just as anyone walking by would have seen nothing out of the ordinary to cause them to say maybe I should stop.  My illness is invisible to them too.

    I do understand that this view leaves personal responsibility on the side.  But if you think about it, our diseases change day to day, and sometimes all we have to go on is the signals we get from our bodies.  Understandably we all should know our limits and do our best not to use them, but we are also taught to continue to stay as physical as possible so we don’t lose our abilities.  It’s a constant catch-22.

    So while we need to be aware of our limits and how far we push ourselves, others need to understand what it's like for us when we are suddenly faced with no pain and a normal body for awhile.  It's what we dream about. All the time. Of course we’re going to take advantage of it. And just like others cannot see the pain we are in most of the time, we cannot see when or how bad the return of our illness may be.

    So bear with us.  We are trying our best to navigate a constant roller coaster of symptoms that come and go, get better and worse, and do all of this with no rhyme or reason at all.  If it really were as easy as exertion caused pain and rest avoided it, our lives and treatments would be so much easier!

Tuesday, June 12, 2018

Social Security Hits Again

Well, it finally came. Paperwork from the Social Security Administration. ( Basically, it is my verification packet. My chance to prove to them that i am still disabled and thus am still entitled to my benefits.

It's hardly even a packet. One sheet, front and back, of questions and ten sheets of instructions in every language you can think of. Governmental waste at its finest. But necessary. So i lay out the rules and begin to write out the last 24 months of my life on the neatly spaced but too few lines provided.

Questions like are you working or have you been self employed are easy. No and no. Though i write my little blog and help edit others’ writings online, i have yet to find a way to earn from my writings. So in that respect, i still need my benefits.

It gets complicated when they start asking about the medical stuff. They get right to the point too: is your health better, worse, or about the same as June 2016. (My DOD) That one question threw me. Of course it should be easy ti answer, but its not. Because there are so many factors to consider and too much riding on a ‘fill in the blank’ answer.

You see, my benefits kicked in due to a fractured back 2 years ago. Since then, my lucky self has endured 3 mire fractures in what now seems to be a new reality for me. My back is toast and i have the disease and required medications to thank. So, i can honestly answer that my health is worse. And i did.

But the finality of placing that particular ‘x’ in the box brought up so many emotions that they need to be addressed, and validated.

I did not spend my time since being approved for disability sitting on my butt watching LMN all day. I have sought treatment, i have exercised, i have changed my diet, and i have lost weight.
Medications have been discontinued due to my vigilance and efforts to keep fighting and keep trying to get better. Physical therapy is a way of life. I walk. And i feel healthier!

But AM i better? Picking an answer to this question is like missing a mackerel being thrown to you and getting pounded in the face by several pounds of fish slime. You are forced to admit you stink. After all the pumping up i've done, i still smell like the bucket of bait waiting to be fed to the beast. I am still disabled.

And i can measure my disability in feet and inches. You see, losing weight and feeling better are one thing… but getting better in a real physical way is another. And that's not happening. I can now barely walk around the block. A goal since my first compression fracture in 2015, and one thats not getting closer. I pull myself up stairs. I would have thought my legs would be stronger with the PT. But the disease keeps on as well, and i'm not sure i'm staying even.

There have been other issues as well, such as a routine appendectomy that required 4 separate hospital stays to recover from. ‘Routine’. As in for me, nothing will ever be routine again. My body cannot fight the way others’ can. Or even the way i used too…

ExplaIning these things on a yes/no form with 2 lines for comments is just impossible. Like ‘my migraines are now controllable with diet except my gastroparesis is worse and im only eating mush.’ Well awesome! I have so fewer migraines i'm off topamax! But i'm surviving on cream of wheat! Woo Hoo!

This government update form is for informational purposes only. Its meant to allow them to gain a snapshot of how you compare to yourself from the issuance of benefits.

But it becomes so much more to us, the disabled, the dependent, the ones living day to day in a cloud of getting by. A cloud that allows us the luxury of seeing improvements that don't exist in the long hall. I turn a page when reading without my finger shaking now. But both hands now tremor while doing bigger things than reading.

I was allowing myself to live in the clouds and feed my delusions of getting better until this form came. And the necessity of being real was forced onto my psyche. Because in the long run, it doesn't matter that i can walk around the block. It matters that i break by bending over. It matters that i break lifting a load of wash. It matters that i break putting dishes away.

In fact, I break everytime i feel well enough to participate in life. And that's what matters in deciding if i am better or worse. Because no matter how much walking i do, PT i complete or dietary changes i make, i will still break. Feeling stronger just makes it more likely i'll try moving an antique Queen Anne's chair across the room. Alone. (Ending me up on the couch for 3 days.)

So i am not better, and i am not the same as, but rather i am worse than i was. And how sad is that after the time spent fighting the disease, recovering from fractures and surgeries, winning over migraines, and forcing my depressed, sad ass out into the world to see stuff and do stuff that makes me happy.

How sad is it to have to face the disease head in and admit it is winning.

But that's what the paper calls for. A true accounting. So i gave it one. And my doctors did too, because it asks if you've discussed returning to work with your doc. So i did, and i can't. And really, who would hire me with my odds of fracturing during normal routine activities?

I finished up the form with a listing of medications, appointments, treatments, hospitalizations, and surgeries I've had. (I needed more room.)

And that was it. Found a stamp, sent it in, and wait to see if they believe me or if they decide they need to see the back breaking freak in person. My luck-they will!

Six questions to review and update their records. Six questions that took me from thinking I'm on the way up to landing my butt squarely on the hard ground heading downward.
Maybe it needed to be done. A good reality check is always helpful lest you become so distanced that you forget about your needs in the first place.

I'll say this… having to face how much worse i've gotten in 2 years was eye opening. And cruel. But it allowed me to see the progress as well. The fact that i do still walk after 4 fractures or the fact that i can sit long enough to enjoy my boys showing me something cool. I can be still enough to take photographs and tolerant enough to travel great distances for family.

I'm worse at everything, but can still do everything. And continuing to ‘do’ is my whole goal.

Let the government have the big picture. Keep the little day to day accomplishments to yourself. That's where your healing moments are. It's what gives us our hope and happiness. Its how i measure my progress, even if the hand i’m measuring with hurts like hell!

Sunday, March 4, 2018

The Value Of Makeup For Chronically Ill People

    I will fully admit to being a closet fashionista. But at just over six feet tall, I can’t really indulge in this particular passion, nor would I necessarily want to. Though I love the modern styles; I do not love the idea of magazines setting standards women can’t fit into. Except when it comes to makeup. I love the playfulness and creativity of makeup! And when you live with a chronic illness, there are times when makeup can be more helpful than any drug.
    You see, makeup may seem frivolous to many people, but when you live every day battling illness and pain, your idea of self becomes skewed. It’s like you develop two separate identities. The ‘you’ who hurts and is sick, and the ‘you’ who is not. But because most of us are symptomatic more often, we tend to identify with the chronically ill part of ourselves more easily. And that can cause us to lose a big part of ourselves. The confidence and self esteem that came with the ease of our lives before we became sick. That sense of self is eroded every time we have to fight just to get through the day or struggle to complete a simple task such as taking a shower. But this is where the concept of makeup being a shallow, narcissistic product can be challenged.
    How many times have any of you reading this gotten up feeling like a train ran you over and dragged you to the next town? And when you see yourself in the mirror that’s exactly what it looks like? Now imagine fighting an illness that relentlessly attacks your own body and causes daily pain. What will you look like then? Dull, tired skin and dark circles? And that’s aside from any rashes the disease itself may cause. What a great confidence booster after struggling just to remain standing.
    Are you seeing where I’m going with all this? While I fully understand that the act of utilizing makeup for some is exhausting, been there, I am suggesting that the overall mental boost it can give is well worth it. Makeup can cover our lack of sleep. It can hide a butterfly rash. It can even fill in the creases that our pain faces have caused. Sure, laugh lines are sexy. Grimace ditches? Not so much.
    So this has become another area where I have become a collector. I collect colors. I collect brushes. I collect articles and I collect techniques. Yeah, I know, a woman over fifty should not wear glittery eye shadow. Blah, blah, blah. I love my glittery copper shadow! I also love my plum colored eyeliner and mascara. I watch makeover shows and makeup competitions all the time. I use white highlighter tricks I learned on reality TV. My eyes are my best feature so I play with them all the time. Pretty eyes make me feel pretty. They make me forget the purple circles and puffy bags under the makeup. Or at least they allow me to believe people are looking at the new green-gold shadow I’m trying instead.
    The caveat to all this has been my learning curve. I’d be fooling myself and short changing readers if I didn’t mention the issues I’ve encountered. I wear full face makeup when I go out. I react to sunlight so I protect my entire face. But I also have very sensitive skin. (Maybe autoimmune related, I don’t know.) So in wearing full face makeup, it has taken much trial and error finding brands that do not cause reactions to my skin and especially my eyes. I now look for as much all natural as possible.
    I also use SPF 15 or 30 everything. Even lip gloss and lipstick if I can find it. I have Sjogren’s and my lips crack and peel. I will mix moisturizer with my makeup base as I use cover stick and powder too. I have even created my own eyeliner with hypoallergenic eyeshadow and neosporin gel to prevent infections.
    It took a long time to learn what blush colors match my skin when I rash out, but I always carry that with me to fill in between a rash if it occurs. I will occasionally use lip gloss on my cheeks for a more natural look. It’s easier to find with natural ingredients and SPF. I’ve mixed my own colors of glosses and lipsticks too. But mostly, once everything has been proven, I play.
    So I encourage all of you to play. You don’t need to wear a full face of makeup like I do. I have my own reasons for doing so. But play. Indulge. Find a look that is totally you and perfect it so you can do it easily. Looking good gives a boost and may be the tipping point between staying in or getting out. It was for me this morning. And I know we all need to get out a lot more than we do!

Monday, February 19, 2018

This Is Progress?

    A lot of articles and stories are written about our experiences as people with autoimmune diseases. I’ve written many myself. But I recently realized that not many articles have discussed the aspect of disease progression. And as all of us who are chronically ill know, our diseases do progress. But when they do, it can throw us into a complete tailspin. Here’s a summary of some of the reasons why that many of our friends and family don’t realize.

  1. When our illness progresses, it can cause a whole new set of symptoms we are not used to. As a person who has had my disease for 23 years, I have only experienced two major progressions. The most recent occurence included a drastic increase in dry mouth, extreme hip pain, and balance issues. Except I didn’t put it all together at first. You see, I have to sleep with a fan on. I need the air circulation on my face and the white noise. But it can also be drying so when my tongue started adhering to the roof of my mouth, I assumed it was that. My tongue would wake me up in the middle of the night which is when I would notice my hips. I thought I was only noticing the pain because I was awake. figured it was because I was awake. Of course, now I wasn’t sleeping well. No sleep equals balance issues… Or so I thought. Once I realized what was going on, it became a whole new level of awesomeness. And a bunch of regular issues I had to learn to live with.

  1. With new symptoms come new medications, and side effects. As I already deal with pain, adjusting my meds was easy. I also own a cane and had to adjust to carrying it with me more while I got used to my new ‘center’ so to speak. Dry mouth however, had never been a real problem for me. Sure, I drink around a gallon of water a day (and I carry it in my giant, yet stylish, purse) and I can now sense restrooms like Spiderman can sense danger, but the burning desert feeling was new. So with sticky tongue a thing now and drinking Biotene all day long not recommended, I really had to figure out options. There are medications for it however. And they work. Except now I get even more frequent and intense random hot flashes. It’s a coin flip really, sounding slurry and drunk or looking red and sweaty…

  1. All this new stuff takes getting used to, which tires us out. Pain in general raises blood pressure, heart rate, and temperature. That in itself is stressful on the body. And most of us are in some sort of pain all the time. A progression involves an increase of our symptoms at the very least, which in turn equals an increase in the stress on our bodies until we learn how to manage those symptoms as our new norm. Think about that-OUR NEW NORM. Yes, our norm is constant pain, constant stress of some sort on our body, constantly subject to change. And that’s just from the realities of our disease, not from living life or any regular sickness floating around that all of you normal people consider “feeling like death warmed over”. Y’all have NO clue.

  1. Progressions will happen, even when we take all our medicine. This should be a no brainer, but I’ve been asked too many times: What did I do to bring on a flare up? (nothing, they can come on if I lay in bed for a month-been there done that), Why didn’t I drink more to avoid dehydration? (I did, my body shed it like a fat lizard), Why don’t I just eat clean? (or eliminate this or that or use supplements… that’s not how the immune system works). So here’s the quick low down. Autoimmune (AI) Disease means your immune system attacks YOU. It thinks there’s an invader, turns itself on, and attacks some part of your own body. Medicine can only modify or suppress that response, not turn it off completely or reset the immune system. Not yet. Different meds affect different parts of the immune system, hopefully specific to the different diseases. No diet or supplement can modify or suppress the immune system itself. They can reduce swelling which helps. Because this response is on the order of an allergic reaction, it get stronger over time. In some people this happens slowly, in others it happens much more quickly. But it happens. Meds can only slow it down.

  1. A progression reminds us that we’re sick and ultimately there’s nothing we can do about it. And that’s terrifying. Seriously. Imagine it. You break your leg. It’s in a cast but it heals. The cast comes off and you can walk again but it hurts. OK. You can get used to the pain. Years go by and you hardly notice the pain anymore. Then one day you wake up and take a step but it hurts 10 times worse than normal. You call the doctor and he says, “Oh yeah, I forgot to tell you. At different points in time, your leg will hurt worse for no reason at all. This will continue randomly for the rest of your life. You may or may not lose the ability to walk. We have no clue why and cannot stop it. Sorry!”. You’re first reaction would probably be WTF?! That’s our reaction every time our illness progresses no matter how much we understand our diagnosis. We are secretly delusional. We want it to go away. Now. And when it overpowers us by getting stronger and worse, it reminds us of our mortality. That’s something no one wants to think about.