A Real Struggle

I struggle to understand some things. Some of it may seem like common sense to others, but to me I just do not understand it. Such as abuse, physical, mental or spiritual. I know it exists and I understand it, but I fail to understand how someone can be bent in the direction of carrying out such abuse.

There are myriad of theories to be sure, but at the end of it, I just can’t see myself in a position of deriving joy or pleasure from abusing someone. I also struggle to understand why a certain group of people’s needs supersedes others. And this is a personal point for me. We all want to be first, we all want to matter and so on. But I fail to understand why one group’s need to be protected from certain substances takes greater priority than my need to have my pain managed. And no, I am by no means an addict nor am I seeking narcotics. However, when I show up in an emergency room in so much pain that I am physically sick and no longer able to speak without tears I would appreciate being afforded respect and dignity.

Not being labeled as drug seeking simply because there is a huge influx of people who seem addicted to pain meds and have learned to claim to have certain symptoms in order to get their fix. And because of these people, when others with chronic pain or such come in to emergency rooms in dire need of help, they are now looked at as being drug seeking. I do not understand how one group can be allowed to determine the health care questions and assumptions for everyone who walks through the door.

Of course I also fail to understand how we can have such a great understanding about addiction and such a little understanding of the many different ways lupus can affect a person’s quality of life and pain levels.

I struggle to understand why my needs and concerns are not taken as seriously by the government as the needs of addicts. And why I must be painted with the same brush as they are when my needs and situation are rather different from theirs. Perhaps the idea is, it is okay to waste my time and a nurse’s time going through a rather long and ridiculous questionnaire just to have a doctor review it before taking my lupus issues seriously.


I’d Rather Be Sleeping

Do you ever have one of those days where you wake up and wonder why you woke up?  Not in a bad or negative sense, but rather one where when you wake up there are a million things that must be dealt with right away and you woke up feeling tired.  That’s the kind of day I was having.

Although it was a few items of less than million items I said above.  Okay fine, since you asked nicely, it was 6 things that needed to be dealt with all at once.  But those 6 things might just as well have been a million things for the success outcome.  In other words I wasn’t feeling too confident about taking on everything that needed to be dealt with.  Not first thing in the morning.  Not before coffee, copious amounts of coffee by the way.

So I woke up tired, still having nagging pain that should have subsided already and a phone meeting with an insurance company.  Because apparently now the insurance company has received a medical degree, a specialist’s designation at that.  Oh and the insurance company knows for a fact that the two medications that are kind of working at slowing down the progression of lupus really aren’t ideal for me.  As in they will no longer cover the medication.  Because as they informs me in a lovely letter the “medication is not being used entirely as it is intended”.

Fine I get that my medication is in the chemotherapy family, and anti rejection family.  And true right now I do not have an organ transplant, and no I’m currently not fighting cancer.  But and here is the huge but, the meds are what’s keeping lupus at bay.  So in. Way, yes they cost a bit more, but if lupus gets out of control the costs go up.  And since they can’t just uninsured me, one would think they’d use some common sense.

The other stuff I had to deal with was also in line with things of that nature.  And so I would sooner have not had to get up and deal with everything because friends, there are days when the world doesn’t have enough coffee.

Late For The Tea Party

I was late for a tea party today.  Not just a little late because I had nothing to wear either.  I was late by hours, as in the party started, ran and finished before I could even consider going to it.  And yes it was a party I wanted to attend.

Thankfully a friend attended and managed to bring me back some of the tea I wanted to try!  And she was able to tell me all about the party as well, which was also nice.  You see the tea party was also a tea tasting and I’m always looking for ways to curb some of the side effects of my medication.  I’ve found some fruit teas that help with some of the issues so I was excited to try more.  And I’m blessed to have a friend help me with this.

I hadn’t planned on being late, the only thing I had scheduled in the day besides the tea tasting party was a doctor’s appointment.  And it was this appointment which was scheduled hours earlier than the tea party that created the issue.  Or rather it was my doctor’s decision, he insisted on “just one quick little test” which he swore would be easy and not result in needing anything more to be done.

He was wrong.  His test resulted in a trip to another department in the hospital, I’m,existent which meant more testing and medication.  Oh yes and a scan that required radioactive dye to be injected into me.  The dye needed time to travel everywhere it needed to go so I had to wait an hour or so and then hop in for the scan.  Needless to stay I was at the hospital the majority of the day.

I texted my friend to let her know I wasn’t going to be able to meet her as I had finished a rather long day and just needed to go home and nap.  She stopped by later on with the tea and the stories which helped keep my mind off the test results and the day in general.  Sometimes lupus is like this, no it isn’t all fun and adventure, some days it’s just hurry up and wait.

Learning Always Learning With Lupus

One of the lessons I learned after spending so many years in school is that just when you think you fully understand a subject, you discover some obscure fact that leads you down another rabbit hole of learning!

Lupus also ensures I am reminded of this lesson, sometimes by making me juggle symptoms and specialists.  And other times just when I think I understand my relationship with lupus something new comes along and forces me to reflect and reassess.

Today I was reminded of this lesson again, this time from an insurance company that decided not to cover my medical claim because the medication I was prescribed is not listed as being used for lupus.  My doctor prescribed the medication as an off-label means of managing my lupus symptoms.  The insurance company decided that I don’t deserve to have this medication covered as my doctor clearly doesn’t know how to use the medication as it was meant to be used.

Although countless people have lupus, after all it is the leading autoimmune illness, we still do not have a lot choices or options when it comes to medical treatment.  There is still a great deal to learn about lupus, which in turn leads to discovering new means of managing and possibly curing this illness.  Let’s never stop learning, let’s never give up until we have the answers and a cure!

When Too Much Used To Be Fine

The four-footed companion doesn’t understand the concept of “too much”.  As in too much heat because it was beyond war mush today.  Which leads me to the next too much which was too much sun.  Too much sun isn’t good for me, is great for making lupus worse, but my medications have rendered me so sensitive to the sun that when I have too much I swell up and go an odd pinkish purple.  Call me the human puffer fish during those moments.

Now to be fair, the four-footed one found plenty of shade, that which was cast from parked cars and such.  It would be fine with me if the shade provided by parked cars covered more than my feet and ankles.  With the majority of me exposed to the sun I tend to rely on sunscreen and clothing with sun protection.  It also means that I tend to be covered from wrists to ankles.

So today was a day of too much because the weather forecast indicated cloudy and so I packed different clothes for this trip.  And thus it took only a short period of time to reach my too much threshold.

I wasn’t always like this, I used to enjoy the sun and the heat and never grasped the concept of too much sun or heat.  Sure I still wore sunblock but I als didn’t find myself relating to Dracula as much as I do these days.  There simply was no such thing as too much sun or too much heat, rather they were just glorious days. I miss those days..

Chipmunks And Me

When I was younger, I used to feed animals bits of crackers and such. If you were a duck or a goose, chances are I would throw the cracker your way.  If you were a squirrel or a chipmunk I would place the bit of cracker somewhere near me for you to come and nibble on.  I might also have nuts or seed grass pieces to hold out to you if you were cute and fuzzy.

My all time favorite to feed was chipmunks, you see I loved how they would pack all the offered food into their cheeks which would get chubbier and chubbier.  I guess back then I adored chubby cheeks, and to a degree I still do, just not on me.  And unfortunately as part of my lupus treatment I take a steroid called prednisone which just happens to give me chubby cheeks.  Well actually what it does besides giving me chubby cheeks is an incredible appetite, which results in the desire to eat all the time.  Eating all the time can lead to more than chubby cheeks.  And chubby cheeks on me are not cute, not like they are on chipmunks.  Thankfully I do not stay on prednisone all the time!

Hey There Sunshine

When I was growing up we had a neighbor who spent every moment she could in the warm sunshine with as much skin exposed to the sun as possible. The minute it was warm enough she’d be sunbathing top-less for hours on end until she reached a golden color I related to well cooked French fries! 😊

I myself did not sunbathe as per say, but I also wasn’t afraid of the sun.  I would acquire a decent tan from playing outside regardless of how many layers of sunscreen my mother slathered on me.  I’m pretty sure I simply out-wore the sunscreen during that time, nothing deliberate and no thought of getting a tan.

After getting diagnosed with lupus and being placed on a variety of medication which made me sensitive to the sun I tend to avoid bright sunlight as if it were the plague.  This means that I am starting to match Beloved glowing white color.  No, actually what it means is that I never go anywhere without wearing sunscreen and having the stuff with me at all times.  It also means wearing sun protective clothing with long sleeves and legs.  And yes a rather large hat.

I didn’t start my lupus journey with such avoidance skills.  As a matter of fact I flaunted my exposure to the sun, because what could really happen?  In case you are wondering what could really happen is that my hands and feet were swollen to twice their normal size.  My skin was sensitive, itchy and a blotchy reddish-purple color.  And yes friends, this had to happen more than once before I clued in that the sun and I have a different relationship.

Now id like to say that since those days I’ve never had a run in with the sun again, but there have been the odd times when it starts off overcast and somehow while I out walking or whatever the sun plays peek-a-boo and I get caught not exactly prepared.  Thankfully those times are very rare.  Also thankfully I don’t run and hide from the sun either.  We just have a different relationship now as I said before, and I still enjoy it in different ways.