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.

Thursday, January 4, 2018

Stories From The Second Floor

    Recently, I had the distinct misfortune of of needing emergency surgery to remove my appendix. It went gangrenous and ruptured the day after Thanksgiving. Little did I know that that would lead to a month of fighting for my life and spending more time in the hospital than at home. Due to my autoimmune conditions, my body went bananas and anything that could go wrong, did. But, I survived, a little worse for wear, bruised, scarred, and down 20 pounds-but alive. And full of stories. Stories I’d like to share here because with all the pain and crap we go through as chronically ill people, there’s always that one moment of hilarity that breaks through. After going through an entire month of pain and crap, I found quite a few moments to share.

  • THE ICE CHIPS AND GAS: As the mother of boys, I have always been the referee of farts. I really can’t stand them even though “everyone does it”. So of course, the first rule I’m given upon getting to my room is “no food until I pass gas”. I could only have ice chips. Yeah, I get that this is to ensure my intestines are working again, but no juice, no broth, no popsicles? It was my 5th day on only ice chips (yes, I said 5) when I actually had this conversation with my nurse: “OK, so what constitutes an actual fart?” “Why? What happened?” “I just felt a lot of bubbles escape… well, my butt.” “Oh, we kind of like it to be forceful enough to be heard. So if you couldn’t hear the bubbles escape, it doesn’t count. But I bet it’ll be soon!” She was right too. Later that evening, I sacred my husband by giving a big WooHoo! when I let one rip! Unfortunately, that side effect of surgery takes a very long time to go away leading to much embarrassment and the mantra “my wife is a sailor!” (WooHoo!)
  • THE BUTT DRAIN: After finally healing enough from my surgery and meeting all the requirements to go home, I thought all I had to do was sleep and slowly increase my food intake. WRONG. I quickly developed two major abscess in my abdomen and landed back in the hospital. OK, more antibiotics. But this time they decided to insert tubes attached to bags that would drain the fluid from these infected areas as well. I would be awake but medicated while they did this. (Ummm…) So we get to the procedure room and I get on the table and the first thing they tell me is to lay on my stomach. I did not immediately say “are you insane, I just had surgery!” Instead, they explained that they could not access the abcess from the front. (This keeps getting better and better!)  After the procedure, I ended up with one tube entering my lower back and one entering my upper butt cheek, which I sat on every time I used a toilet. I never did find out exactly where that abscess was which required them to use my butt as an entry point; but I now have a perfectly round scar on my right butt cheek as a memento!
  • TAKE MY ROOMMATE: During my second stay at the hospital, I was graced with a roommate that is the definition of what not to do when you are a roommate in the hospital. She stayed up late (4AM) watching TV (loudly) and laughing as if she was home. She refused earbuds for the TV. (by screaming “get them off my body?!”) She used my shampoo. She argued with her mother constantly. She ordered snack food at all hours. She monopolized the staff. And she refused to wear gowns. This last one is what became the biggest issue. I was fortunate enough to have family visit me often during the day. I warned them what she was like before they came. At one point while my mother was there, my roommate had a “crisis” and came running through the curtains dividing our halves of the room to use the bathroom. (she got the window, I got the bathroom) She was wearing just her underwear. (the no gown thing, remember?) This happened a few more times. Fortunately never when my husband was there. Mom and I dubbed it ‘lunch and a show’.
  • CURTAINS: After my second stay was over and it was deemed the drains were working and I was no longer sick from the abcesses, I was once again sent home with the drains still in and the bags safety pinned to my clothes as the next big fashion statement. And it went very well for quite awhile! Until my intestines revolted. I actually thought it was my Sjogren’s flaring up. I was sore and to be honest, occasionally my system doesn't process water and sheds it all quickly meaning a day on the toilet. But when I spiked a fever, I was told to come back to the hospital. Again! This time it was C-Diff. A bacterial infection caused by antibiotics (for the abcess) killing of good bacteria in the colon and allowing the other bacteria that's normally there (C-Diff) to overgrow and cause real problems. It's also impossible to kill outside the body so I was quarantined. I’ll admit, seeing my husband in a yellow paper dress every time he came to visit was priceless! Anyway, I required a private room. So I had to wait for one to be set up. And it was a nice room: 2 windows, end of the hall, quiet… but no curtain around the bathroom. None! And the one thing C-Diff does is make you go. I kind of needed that curtain. I had to have my husband stand guard more times than I can count, but even after multiple requests, it never came. I eventually got creative with extra hospital gowns.
  • AND MATTRESSES: Then comes the fact that my doctor, knowing my history of fractured vertebrae, ordered a special mattress for me so I wasn’t in pain laying down so much. The problem was, in quarantine, nothing could leave my room. So the old mattress that was taken off my bed was set up in my shower. Right next to the toilet. No problem right? HA! It lasted all of 3 visits to the potty before wreaking havoc the 4th. I was sitting doing the C-Diff shuffle when that mattress ever so slowly folded over on itself and landed right on my head and shoulder pinning me to the opposite wall. I tried, but really was not strong enough to lift it, push it, or stand by myself. I had to pull the red cord.  That means there’s an emergency and brings staff rushing to your room. And here I am on the toilet pinned by a mattress. GREAT! However, the looks on their faces was hilarious. Really! How often do you see a mattress fallen over on a patient who’s on the toilet? I’ll never stop laughing about that day!

    These are just a few of the funny moments that I took away from my month in and out of the hospital. I was there so much that staff knew me by name and the techs doing the testing did double takes. Food service workers knew my preferences and brought me extra butterscotch pudding. They made this horrible ordeal bearable by being so caring.

    Now, there is just one incision left to heal and I need to build my strength back up. I went through something I honestly didn’t think I’d make it through. The key turned out to be my attitude and my sense of humor. Hopefully, I have passed that on to some of you through this story. If not, just remember to always be aware of rogue shower mattresses!