Failing As A Patient Advocate (And A Granddaughter)

I’ve been absent from my blog for awhile now.  It’s not because I haven’t had anything to say or write about, but more so because I wasn’t sure how to write about the things I was dealing with, or the things were in the midst of happening and I was trying to privately process everything that was going on.

The most recent thing I’ve been dealing with is the hospitalization, and ultimately, the death of my Bubbie (grandma).  She died November 30, 2016, at the age of 90, after spending almost a month in the hospital. 

Yes, I understand that she was 90 years old.  So please don’t provide lame platitudes about how she lived a good, long life.  I get it.  But that’s not what this post is about.  This post is about the complete and utter failure of our medical system, and the fact that as a patient advocate, I stood by and watched it all happen and felt powerless to stop it. 

My Bubbie went into the hospital on November 1, 2016.  She was released from the hospital on November 11, 2016.  She went back into the hospital on November 13, 2016, and never came out, much to my family’s complete and utter shock. 

Prior to this hospitalization, my Bubbie was exceptionally healthy for her age.  She lived independently.  She cooked her own meals and cleaned her own house.  She did everything.  We celebrated her 90^th birthday in May and it seemed like there was no sign of her slowing down.   

However, after feeling tired and unwell for several weeks, she went to the hospital and was diagnosed with pneumonia.  She was put on oxygen and antibiotics.  She seemed to improve enough to go home.  She was discharged from the hospital, without oxygen – which she had never needed prior to this – for a day and a half. 

She started having additional breathing issues, and much to her disagreement, we made her go back to the hospital.  We were told that the pneumonia had resolved, and that the doctors weren’t exactly sure what was going on. 

And quite honestly, they didn’t really seem to care all that much.  I could tell by the way some of the doctors talked to her that they had written her off because of her age without getting to know her, and learning that she was sharp and clear-headed.  Unless of course she was deprived of oxygen or her carbon dioxide levels were allowed to get too high, and then she became disoriented.

But seriously, they talked to her like she was three years old, and they acted like she wasn’t capable of making decisions for herself.  They talked about her, around her, everywhere but at her. 

Part of the problem is that my Bubbie ended up spending so much time in the hospital, and most of that time confined to a bed, which caused fluid to build up and her muscles to weaken, amongst other things.  And we all know that the longer you stay in the hospital, the more likely you are to get sicker.  That’s exactly what happened to my Bubbie.  Although the pneumonia she was originally treated for had resolved between the first and second hospitalizations, my Bubbie developed hospital-acquired pneumonia. 

My Bubbie’s own primary care doctor, who was – operative word “was” – also a family friend, failed her because he was able to deal with her when she was healthy and only needed to be monitored routinely, but as soon as she required more, he was nowhere to be found.  He didn’t bother to call once or visit her in the hospital, despite knowing full well that she was there. 

And his associate in the hospital was an absolute joke.  When it was explained to us upon my Bubbie’s second admission that the reason she was sent home without oxygen the first time is that she was denied it, I asked the associate what would happen if she was denied it again upon discharge.  Ultimately, we never got to that point, but the doctor told me that it was a good question, but she didn’t know.  That answer was unacceptable and I told her so. 

Most conversations that were had were as effective as the previous one.  I wondered why we were having conversations about invasive heart surgeries that neither my Bubbie nor the rest of my family wanted her to go through, when our collective goal as a family, and my Bubbie’s own goal for herself, was to get her home. 

When it became clear that my Bubbie likely would not return to her previous state of independence, we were provided with the opportunity to talk to the palliative care team.  This occurred six hours before she passed away.  SIX HOURS.  When my Bubbie was sedated and could no longer make a decision for herself, when it fell on us because there was absolutely no other choice. 

These conversations don’t happen when they need to.  Or they don’t happen at all.  I totally understand now all of the stories I’ve heard of people saying that their family member entered hospice just a few days before they died.

Obviously, no one ever leveled with us and told us what was really going on, and what the likely outcome would be.  And this is despite the fact that unless it was the middle of the night, my Bubbie was never alone.  There was constantly a family member with her.  And we still couldn’t prevent all of the failures that occurred.         

I will say, the experience wasn’t all bad in that the nurses were incredible during this experience.  They were so kind and attentive.  They treated my Bubbie like she was a person and not like she was merely someone else’s family member.

However, my Bubbie did everything right.  She went to the doctor religiously.  She paid for good health insurance.  Again, up until this experience, she was in exceptional health for someone her age. 

It’s hard that she’s gone, but the hardest part is the guilt I feel for not doing more.  This is what I get paid to do.  I failed at my job.  But what’s worse is that I failed my family.  I failed one of the most important people in my life. 

I didn’t ask the hard questions.  I didn’t do a good job of shifting the conversation.  I didn’t do the things I felt needed to be done because I wanted to respect family dynamics and didn’t want to rock the boat.  I became passive, and I am not a passive person. 

As someone with a chronic illness, I’ve experienced firsthand how our healthcare system fails sick people, and now I’ve experienced firsthand how our healthcare system fails healthy people, who become get sick, and who die. 

I hope my Bubbie knows how much we love her and that we were there with her until the very end, even when we unknowingly ended up there.  I hope she knows that if we had been fully aware of what was likely to happen, we would have taken her home when that was still an option, when that’s what she wanted, when that’s what we all wanted.  

So take a good, hard look at the picture below.  My Bubbie was everyone’s Bubbie; that’s the kind of person she was.  This could be your grandma.  This could be anyone in your family.  This could be you.  

Eva Rott

May 27, 1926 - November 30, 2016

Product Review: Axon Optics Migraine Glasses

** I have been given this product as part of a product review through the Chronic Illness Bloggers network.  Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. **

I’ve been absent for a while.  There are some things that happened recently that I cannot really publically talk about right now, and I’m not sure when I’ll be ready to.  But I’m back to post this product review and I’ll probably go away again – both for the sake of my emotional and physical health (more on that later).   

Anyway, this is a review for Axon Optics, specifically for the COVER-RX indoor glasses. 

What drew me to these frames in particular was the premise of being able to wear them over my prescription glasses.  I have been known to wear my prescription sunglasses inside when I get headaches that make me sensitive to light. 

People probably think I’m hungover, which I’m not.  I just get really bad headaches with pesky light sensitivity, and the only thing I can do is slap some glasses on my face and look away from the light.  That makes me sound like a vampire.  But I’m not a hungover vampire.  I just have lupus. 

I’ve been getting headaches with light sensitivity for as long as I can remember.  They have become more frequent since I was diagnosed with lupus and rheumatoid arthritis.  Sometimes they are so bad that I can’t function.  Other times I can function, I just don’t do it well. 

Axon Optics specializes in glasses specifically for migraine sufferers who experience light sensitivity. 

 

Overall, I was really impressed with the quality of this product, from the box they were packaged in, to the case that they came in, to the glasses, themselves.  I will say, they did put some pressure on my nose, which initially increased the pain.  I think I just have to get used to wearing them.  I felt like the tint was something to get used to, as well.    

The other thing is, wearing two pairs of glasses isn’t super sexy.  In fact, it looks kind of goofy.  Any more or less goofy then wearing traditional sunglasses inside?  Probably not.  I guess the positive thing about wearing actual sunglasses inside is that people can’t see my eyes, which is good when I don’t feel good. 

If my headaches get bad enough, the only solution I have found is to put a cold cloth on my head, close the lights, get under the covers, put a pillow OVER my head, and go to bed.  So the idea of being able to still function with one of these headaches is very promising.  Especially by doing something that I do all the time – wearing glasses. 

That’s the other thing I like.  This is a simple solution to a complex problem.  Not simple for those who created them, but simple for those of us who have tried a plethora of solutions with little to no relief.    

I do feel that this is one product that I have to keep trying to really adequately reflect on the results, especially considering that things have been so crazy lately.    

With lupus, I have full body sensitivity to fluorescent lights, so I’m curious to see if wearing these glasses will minimize that, as well.  If only they could create a full body filter for fluorescent lights – that would make this lady with lupus very happy. 

If you suffer from headaches, especially with light sensitivity, you might want to check out these glasses.  Axon Optics has a variety of styles.  They are a bit pricey, but if you wear prescription glasses, then the styles that go over your glasses like the COVER-RX are a great option.   

Doctors Are Part Of The Problem, But They Can Also Be Part Of The Solution

“Are you a good witch or a bad witch?

Who, me?  Why I’m not a witch at all.”

There are good doctors and there are bad doctors.  I’m not a doctor – well not that kind, anyway – but recent experience suggests that maybe I should become one.

On Saturday, I had a follow up visit with my primary care doctor.  To put it mildly, it went terribly.  He asked me one question, I answered truthfully, and he freaked out.  He basically told me that if I coped better with life, I wouldn’t be sick. 

Well isn’t that rich?  Is that your many-years-of-medical-school-medically-informed-opinion doctor?  Because if it is, you need to go back to school.  And if it’s not, you need to stop.  Just stop. 

You know, when he learns what it’s like to become chronically ill in his early 20s and lose his dad on his 29^th birthday in a very traumatic way, then judge me.  But until then, don’t – and oh wait, he can’t because he’s already way past that.  All things considered, I think I’m doing pretty well.  And I am not perfect my any means, but I don’t deserve to have some doctor’s petty resentments projected onto me.  That’s not right and it’s not fair.    

I barely held it together in the appointment.  I should have stood up for myself.  Or I should have just walked out.  But I didn’t.  I sat there, trying not to cry.  Trying not to scream “You have no idea what you’re talking about!”  But I clammed up, I closed off, and I didn’t know what to say.  I don’t think I’ll ever go back to him again. 

This situation reminds me why I sometimes hate doctors, and why I sometimes go through phases where it all just gets to be too overwhelming and I have to take a break for a while. 

Whenever that happens, I get delinquent about doing the preventative things I’m supposed to.  And then things happen, and I’m rocked back into reality and the fact that I have a crappy immune system and all that comes with it. 

And maybe that’s because I’ve had a lot of bad doctor/medical professional experiences, not just the one I just described.    

Here is a case in point:

Not long after I got sick, I had a yeast infection. It was really bad.  I’ve never had one like that before or since.  My only choice was to go to the walk in clinic at student health.  I saw this nurse practitioner who was asking me questions and basically told me that since I had lupus and RA, why was I even thinking about having sex?  Like sick people can’t have sex?  I was so shocked, I didn’t really react or fight back. 

Honestly, I’m still traumatized by that one.

But then I have experiences like today, that renew my faith in the medical profession, and make me realize that there are good doctors out there, and that we need to work together to improve healthcare. 

I finally went to the gynecologist, after too long of not going (read several years).  And I had to see a man, which I wasn’t thrilled about.  But it went very well.  The doctor was very thorough in taking my medical history.  And he really understood the complexity that is my chronic illnesses.  He was very non-judgmental.  And his office staff was very professional.  I was very impressed.  I left feeling very good about the appointment, which you can’t generally say about the gynecologist.  And thought, why can’t he be my primary care doctor?  

I’ve learned that the office staff at a doctor’s office says a lot about the doctor.  So this doesn’t bode well for my primary care doctor. 

Aside from the situation I described, I received a notice that my new insurance had been billed for an appointment when I didn’t have that insurance, so of course they rejected it.  I’d called my old insurance, and they stated they had never even received the claim.  Getting anyone from my primary care doctor’s office to deal with it has been a huge problem, so in retrospect, I shouldn’t have been so surprised about Saturday because I suspect that some of what went on was a result of having to basically fire his entire office staff.    

But regardless, if I’m having a bad day, I cannot treat my clients the way my doctor treated me.  So even if, as I strongly suspect, the behavior wasn’t actually directed at me specifically, it doesn’t make it okay.  It’s unacceptable. 

And if the billing issues that I experienced are such a widespread problem for this doctor, then I believe the doctor should have sent a letter out to all patients, explaining the situation and that they are trying to rectify it.  But rather than act responsibly, he decided to take it out on me. 

I’ve spent a long time feeling like improving healthcare falls squarely on the shoulders of patients.  But I think that doctors can help with this, too.  And they should.  Rather than taking anger and frustration out on an individual patient, talk to Congress.  Explain that while a practice manager used to be a master at insurance, the system is too fractured now and confusing, that it’s impossible to stay on top of it.  And not only does it make it difficult for the doctor and his staff, it also makes it difficult for his patients. 

For patients like me, who had to make seven calls to his office, only to find out that he fired his old biller, which seemed to be the standard line.  Five messages went unanswered, a call to a person told me that they would reach out to their outside biller and she would get back to me.  Weeks went by with nothing.  So despite my disappointment on Saturday, I mentioned it on my way out of the office.   I was told I had to speak with someone on Monday.  I spoke with someone yesterday, and I have been assured that the situation will be rectified.     

But this isn’t how it should be.  This shouldn’t be what patients come to expect as normal.  Every visit shouldn’t become a fight.  Every appointment shouldn’t be approached with trepidation because of how much it might cost or how difficult it will be to make sure that the right amount gets billed to the right insurance. 

I shouldn’t avoid obtaining necessary healthcare because I’m worried about how a doctor will react to me.  Or if they won’t be understanding or compassionate toward my illnesses. 

I’m sick, but I did nothing wrong. 

Doctors spend years in medical school, studying and learning.  But clearly there are still things that aren’t being taught well.  Clearly the non-medical aspects of being a doctor don’t rub off on everyone. 

Next time, I will be strong.  I will fight back.  I will throw down.  And I will stand up for myself.  Because I didn’t ask to be sick, and I’m doing the best I can to live with it, but the fact that I’m sick, on its own, does not give anyone, including a doctor, a right to mistreat and disrespect me. 

It bothers me that despite the fact that I don’t have any years of medical school behind me, my eight plus years of experience as a patient still isn’t seen as being worthy of praise or esteem.  For some doctors, it doesn’t even grant me a seat at the table or even a voice in the exam room.  

I will continue to be outspoken when I find the courage to use my voice.  But doctors cannot remain silent.  They are 50% of the doctor-patient equation.  They must stand up for themselves and they must stand up for their patients.  Getting consumed in the greed and the bureaucracy diminishes us all.  It makes doctors focus more on the bottom line and less on healing and minimizing suffering.  And it cheapens the patient experience.  It makes us bitterer, angrier, and less compassionate, both for our doctors and for ourselves.     

Product Review: SunGrubbies Sun Protective Accessories*

If you’ve been reading this blog for a while, you know a lot about me, including the fact that I hate sunscreen.  Yes, I have lupus.  Yes, I have fair skin.  And yes, I hate sunscreen. 

This is a problem.  Part of me thinks I’m allergic to it, and the other part of me thinks I just hate it. 

But I have been walking to and/or from work since I moved last month (a post on that soon).  It’s only a mile and a half away, which isn’t too bad, but it’s a lot of direct sun. 

… I digress…What brings me to this post are some amazing products I was asked to try recently.  I received SunGrubbies Casual Traveler hat and Sungloves.  What’s great about SunGrubbies is that all of the products contain SPF!  In other words, that’s sun protection that you don’t have to lather or spray directly on your skin.    

So it was the perfect time for me to try sun-related products as I generally do my best to stay out of the sun, mainly to avoid having to use sunscreen – lame, I know. 

I am not a hat person.  Nope!  I hate hats about as much as I hate sunscreen. 

But I might be a hat convert now, or at least a convert of hats that look good on me and truly offer sun protection.  The Casual Travel hat is adjustable, which is great, because I have a small head.  It fits well, and I can still see out from under it.  It’s also pretty darn cute!    

But more than the hat, I love the Sungloves.  They are so lightweight and easy to wear.  It’s hard to describe the material, but they’re very comfortable.  And since they’re fingerless, I can still text and use my phone while I walk – do pretty much anything – but I know that my hands are protected.    

And this has always been a huge problem for me.  Even when I use sunscreen, the tops of my hands always seem to get burned.  I’ll admit, I feel a little Michael Jackson when I’m wearing them, but they are so worth it.  I can also still wear them comfortably with my jewelry on, so I don’t have to fiddle with that stuff or worry about it.       

Both items are also very packable, so I am able to just throw them in my purse, and don’t need an additional bag to transport them in.  Both items would also be great for traveling since they don’t take up a lot of space.

I like the fact that I was able to try these products and use them more for everyday than just for traveling, as I’m not sure I would appreciate them as much, as I don’t travel purely for vacation all that often.    

I know the summer is basically gone, or pretty much coming to an end, but unless the world ends tomorrow, the sun is going to be a thing, and you’re going to need protecting from it. 

Honestly, I have to say that these two products are some of the first that I’ve reviewed in a long time that I can actually see using on a regular basis.  And I have been.     

SunGrubbies has created a code specifically for my readers, so if you’re interested in any of their products, visit https://www.sungrubbies.com/ and use the code NOLUPUS10 for 10% off of your order.

Have safe fun in the sun, kids!

* SunGrubbies was generous enough to provide me with these products for free.  However, it was ultimately my choice to write a review and has to do solely with my personal opinion of the product.

Body Shaming and Chronic Illness

One of the first things I heard when I started this illness journey was that my body was attacking itself.  And that rather than fighting off foreign invaders, my body was mistaking my own organs and joints as things that weren’t actually supposed to be there.

While that provides a somewhat easy explanation for a very complicated process of what’s going on, it’s a profoundly negative thing to be told.  And it sticks with you. 

We are told that our bodies are attacking themselves.  We are told that we must have done something along the way that caused this to happen. 

I’ve never been the most confident person in the world.  I’ve been self-conscious most of my life.  And THEN I got sick.    

But with all of this stuff going on, I never really had to worry about my weight.  If anything, I had to be worried about being underweight.  And then, slowly, my weight crept up.

I felt like I was stuck in a rut.  While I used to look at some pictures of me in high school and think I was chubby, I know now that I really wasn’t.  And I was so fixated on gaining the “Freshman 15” in college that I inadvertently lost 15 pounds.    

At my lowest since high school, when I first went to my rheumatologist, I weighed in at 86 pounds.  I know now that, that definitely wasn’t healthy.  And part of my lack of eating was the amount of pain I was in.  That had a lot to do with it.  It wasn’t that, that was my goal all along, to weigh 86 pounds.  And until about five years ago, I never topped out at more than 98 pounds.  Then things changed.  And the number kept going up and up.  When I went to the doctor in February, I weighed in at 121 pounds.  It was the most I have ever weighed in my whole life, and I was completely disgusted with myself.    

That number on the scale was the kick in the pants that I needed to do something about it.  And it wasn’t just the number on the scale.  It was the way I felt.  It was the fact that I could barely look in the mirror let alone consider letting another human being see me without clothes on.  No one in my life was explicitly telling me that I was fat, but I could tell by some of the looks I got that people thought I had gained weight, and I had.  This doesn’t really hit you until you start losing weight and people tell you how great you look.    

So in June, I joined Weight Watchers.  It’s not so much that I wanted to diet, as much as whatever I was doing myself – mainly eating as many carbs and as few fruits and vegetables as possible – wasn’t working.  Sure, it didn’t help that eight years ago I got sick, two years ago my dad died, eight months ago I lost my job and my boyfriend of three and a half years broke up with me, and I moved back to Michigan; jobless, boyfriend-less, and otherwise confused about where my life was headed.  Who would blame me if pizza became my go-to food? 

But I’ve had to do something, and I’ve tried to look at this whole experience as more of a lifestyle change than a diet. 

But I assure you, there is no judgment towards other people.  I know some people I have talked to have looked at me and said “I would kill to weigh what you weighed at your highest.”  But that’s not what it’s about.  It’s about the fact that I didn’t feel like I looked good, and I didn’t feel good, physically or emotionally.  That extra weight was literally and figuratively weighing me down.  

But slowly, I’m working on turning my negative self-talk into positive self-talk.  I can actually look at myself in the mirror again, and shocker, kind of like what I see.  I’ve lost almost 13 pounds, which puts me almost at the high end of my goal.  I know 13 pounds isn’t a lot, but it is for me.  It’s actually 10% of my starting weight.  But honestly, and I keep having to tell myself this – the pounds don’t matter, the percentage doesn’t matter, as much as how I feel, physically and emotionally, matters.    

I hate when my rheumatologist asks me if I’m exercising.  Because it’s not code for “are you moving enough?”  It’s code for “get off your butt and move, you fat ass”.  Trust me, I’ve known him long enough to know that, that’s exactly what he’s saying.  And rather than retort back, “And what’s your excuse?” I smile and nod, and pretend that what he said hasn’t hurt me at all, when clearly, it has. 

I don’t think I’ll ever hit below the 100 pound mark again, but who am I kidding?  I’m 31 years old.  It’s not as easy as it used to be.  Seriously, at 25, it all started going downhill. 

So from the very beginning of our illness journeys, we are fed information about our bodies that our profoundly negative.  And we are expected, despite the pain, despite the stiffness, despite the medications and their side effects, despite whatever else in life might happen besides our illnesses, to rise above, and do it with a smile and all while looking great, all like you would never know we were sick.    

That Time I Got Manhandled By A Phlebotomist

The scene of the crime...

Having dealt with chronic illness for over eight years, you would think by now that I wouldn’t get phased by blood draws. 

But I recently had a particularly bad one that was enough to put me off of it for a while. 

Apparently, when I saw my rheumatologist at the University of Michigan Hospital at the beginning of August, the lab there did not do all the tests that my doctor ordered.  I’m not sure how that is possible since it was all sent electronically, but they didn’t.  I was also told that because of one of the medications I’m on, I have to get my blood drawn every other month, even though I didn’t have to do this with my last doctor, who was the one that put me on the medication. 

So in order to get the rest of the labs done and set up the standing order, I went to the lab at a local hospital near me, as it’s not realistic for me to go all the way to Ann Arbor just for a blood draw. 

I expected that this would be a routine blood draw, but not so.  (And by routine, I mean I know that I am a hard stick) 

The first phlebotomist spent about 10 minutes feeling around for veins in both arms.  That was a red flag to me.  I would much rather have had this person feel around and then give up, rather than try twice and fail miserably. 

The first time she tried, she got the needle in and proceeded to move it around.  Like really move it around, to the point where I was ready to scream, to the point where I thought if it was possible for the needle to come out the other side of my arm, it would.  Finally, she pulled the needle out.  But I’m not really sure why she couldn’t get blood from that area because of the amount of blood that proceeded to flow from my arm when she took the needle out.  

Then she asked if she could draw from my hand.  If you stick a needle in me and draw blood from my hand, fine, but if you stick a needle in my hand and get nothing, we definitely are not friends. 

After that, she said she would get someone else.  Yeah, good idea lady. 

The second person came in.  She asked where they normally draw blood from and I showed her the same spot that I showed the first woman, who opted to do her own thing.  The second woman went in the spot I showed her, and sure enough, blood came out, albeit slowly.  She asked me if I drank water.  I told her that if it was about how much water I drank that day, the blood should be flowing out of me. 

And we won’t even talk about the fact that they started decanting the blood into vials and the second woman proceeded to get my blood everywhere.  Well, we will talk about it because it sucks.  It took hard work to get that blood and then you go ahead and spill it all over the place?      

The second person asked if I was okay and needed juice.  I replied that I was fine and didn’t need juice. 

But in reality, I wasn’t fine.  I left the lab pissed off and frustrated.  I didn’t need juice.  I needed a break.  I needed to get out of there. 

I need to escape from the monotony of it all.  Actually, it’s not monotonous.  It’s always an adventure, and that’s what really gets old about it.  In reality, the routine is for nothing to actually be routine or ever go as it should.

And this situation was just too much.     

It feels like a profound violation.  Normal, healthy people don’t allow things like this to happen to them.  But as a sick person, I’m supposed to sit there and take it.  Without question.  Without argument.  And definitely without anger or frustration. 

Is there a glamorous side to chronic illness?  Some people try to find it.  But right now, I’m not seeing it.  I didn’t sit there with a smile on my face despite the pain.  I bit my lip and gritted my teeth.  But more than anything, I wanted to punch the phlebotomist in the face.  I wanted to pull the needle out myself and tell her I was done.  I wanted to walk away.  I wanted to call my rheumatologist’s office and tell them why I was choosing to be “non-compliant”, and why they can’t make me get my blood drawn, even if they threaten to take my medication away. 

The reality is, all of these small violations take their toll.  I am used to being stuck multiple times per blood draw, I am used to bruising after a blood draw, I am used to lab techs saying stupid things to me, like telling me that I have to put my arm out straighter even though I have arthritis and cannot physically accommodate that request. 

But when all of those things happen at once, when I am attempting to do my duty as the dutiful patient, and it all goes horribly wrong, it’s just too much. 

So yesterday’s anger and frustration has transferred to today.  And so I’m writing the shit out of this experience because I don’t want to stay angry.  I know that there are bumps in the road.  I know that some days are easier than others.  And yesterday was a bad day.  My body reminds me almost daily that I’m sick.  So these not-so-subtle reminders that I truly am sick are sometimes just too much.    

Maybe the bruises on the outside show a fraction of the physical pain I feel on a daily basis and the emotional pain that sometimes occurs as a result. 

I wish I could say that I got in a fight.  I wish I could say, “You should see the other guy”.  But the other guy doesn’t care.  The other guy has education and training to draw blood.  But even I can stick a needle in myself and get nothing out.  Maybe I should learn how to draw blood.  Is it possible to draw your own blood?  If so, I’d probably have about the same success rate at the phlebotomist who manhandled me.  But at least I’d be doing it to myself and not allowing someone else to do it to me.   

Self Care = Must Care

I have never been the poster child for self-care.  I say “yes” to too many things, I don’t say “no” often enough, and I must confess, I haven’t been to a rheumatologist since before I moved back to Michigan from New York.  It’s probably been at least eight months. 

I had to be on call for work for the first time.  It was hell.  Starting on a Monday, I was on call from 5:00 p.m. to 12:00 a.m., then on again from 5:00 a.m. to 8:30 a.m. during the week, just in time to go to work, and the cycle repeated itself.  On the weekend, I was on from 5:00 a.m. to 12:00 a.m.  This was for an entire week.  And by the end, I was flaring for the first time in years. 

For at least two weeks after, I was on a downward spiral. 

Then…I went to Miami for a Pharma event…

Physically and emotionally, I was really in no condition to go.  But I didn’t feel like it was appropriate to let the organizers know on Thursday that I wouldn’t be able to attend something that began on Friday.  Next time, I will trust my intuition, and cancel, even at the last minute if I have to.

There were a lot of issues, and I didn’t stand up for my needs:

1)      I had a very early flight out on Friday morning – meaning that I had to get up at 4:00 a.m. to get to the airport. 

2)     I was basically only supposed to be in Miami for 36 hours and was supposed to fly back to Michigan on Saturday.

3)     The heat and humidity in Miami was terrible.  If I wasn’t flaring before the trip – which I definitely was – I was definitely flaring after. 

But wait, there’s more…

The gate for my return flight was changed four times.  I ran through the airport, which is comical because I cannot run.  And literally could not breathe after the first gate change.  My flight was delayed for three hours and was ultimately canceled.  I spent the night in the Miami airport.  I didn’t sleep.  I spent six hours standing and waiting in line to attempt to talk to someone from customer service at American Airlines.

I rebooked my flight over the phone, but the options were less than ideal:

1)      Wait a full 24 hours and fly out on the same flight I was scheduled for originally, but the next night – No way was I taking a chance of getting stuck in the Miami airport for another night.

2)     Leave Miami at 7:00 a.m. Sunday, take a plane to Charlotte than a flight to JFK and then arrive in Detroit at around 4:00 p.m. – I not very calmly explained to the person on the phone that I have lupus and RA and there was absolutely no way that I could navigate multiple airports in the condition I was in, and that was before standing in line for six hours.

3)     Leave Miami at 8:00 a.m., fly to Philadelphia with an hour to make the connecting flight, and arrive in Detroit around 1:00 p.m. – I ended up booking this flight, but realized that there was a high likelihood I would miss my connecting flight

Ultimately, I ended up booking a flight Sunday morning on Delta.  I had to wait until security opened and then had to walk all the way to another terminal.  I was planning on asking for some sort of transportation when I got up to the customer service desk for American Airlines, but that never happened.  I had to make the choice, being five people from the front of the line, of waiting in line and taking the risk of missing my Delta flight, or getting out of line to make the trek to the other terminal without ever having talked to anyone from American Airlines. 

That Monday, I didn’t go to work.  I could barely walk. 

I swear, I recovered just in time to take a work trip to Boston. 

I’m starting to understand that taking care of myself isn’t always going to be the popular choice or make other people happy.  Some people might even feel inconvenienced or disappointed.  But if I’m going to be successful at anything in my life, I need to take care of myself, first and foremost. 

I’m learning that doing me is more important.  This is hard for me because I feel like I have totally fallen off of the blogging and advocacy bandwagon.  But after putting my body through so much, I’ve had to try and take it easy as much as possible.  It’s hard for me to slow down, but my body has forced me to do so. 

Hopefully if there’s anything I take away from these experiences, it’s to know my limits beforehand and avoid situations like this altogether, if at all possible.  I know that taking the earliest flight out and latest flight back makes no sense for me.  I know that having a turnaround time of less than a day doesn’t work.  I know what I can handle.  I know what is realistic, and in the last several months, I have put myself in completely unrealistic situations.  I have set myself up to fail.  I have to care about myself more and love myself enough to have the confidence in making decisions that are right for me.  Because if I don’t look out for myself, no one else will look out for me.       

Antidote Clinical Trial Search Widget

I wanted to make you all aware of a really cool widget called the Antidote Clinical Trial Search widget.  Because of the size of the widget, I was not able to include it in the sidebar, so I have included it as its own tab below the header of my blog.  

I know that often times patients are interested in getting involved in clinical trials, but have absolutely no idea how to find them.  This widget allows you to search for clinical trials in your area by searching your condition, entering your zip code, distance from you, your age and sex.  You can do all of that within the widget.  It will not navigate away from my blog until it shows you a list of results, which you can explore to see if you qualify.   

If you are interested in participating in clinical trials, I highly recommend using this as a resource.  

Product Review: Mo’s Dream Cream

** I have been given this product as part of a product review through the Chronic Illness Bloggers network.  Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. **

I’ve fallen off the blogging bandwagon, but I’m back, and my first post in is a product review that I wanted to share with you.

I love trying new products, especially those that are thought up by those with chronic illnesses in an effort to help and improve the lives of others with chronic illnesses.   

I recently had the opportunity to try Mo’s Dream Cream and No Mo Pain Stick.  The key to this is that the product is all natural and the main ingredient is capsaicin paste. 

I have heard of capsaicin before, but have never tried anything that contains it. 

According to Keri, the creator of Mo’s Dream Cream, arthritis pain relief can occur in five minutes and can last for six to eight hours, and sometimes longer.    

I’ll admit, I was skeptical about this product.  I have used other pain relieving gels and creams with varying levels of success.  I was also skeptical because I thought, “Fermented cayenne pepper is going to help my pain?  Yeah right.” 

So imagine my surprise, when after using Mo’s Dream Cream, my pain was greatly improved in a very short amount of time.  I spot used Mo’s Dream Cream against another pain relieving product that I used as a test to see which worked better.  And I didn’t test it on just any “normal” pain for me.  I tested it when I was in a full-on flare.

And it worked!  I mean, really.

I feel that the lotion was more effective than the stick.  However, I love the stick because it is portable, and you don’t have to worry about getting it all over the place.

Because it’s all natural, I suppose you can use it over larger areas of your body.  But being used to using products that aren’t all natural, I haven’t tried using it much more than on spots that are especially sore.

To me, the only downside is the smell.  It takes a bit of getting used to, and as a result of my lupus, I am very sensitive to smell.  You can smell the lotion through the bottle, but once I had it on, after a while, the smell didn’t bother me anymore.  I found that the smell of the stick was a bit more palatable, although it’s still a pretty strong smell.  I will say, however, that all of the other pain relieving products I have tried do have pretty strong smells, it’s just not a smell that I’m used to.

If you have sensitive skin, you may want to spot test to make sure that you don’t have a reaction.  I have sensitive skin, but I didn’t have any problems in this regard.  I was also worried that the lotion might burn.  It didn’t. 

The only caution is that you must wash your hands after using the lotion because it does have cayenne pepper in it, and there are certain places you don’t want cayenne pepper to go – your eyes, etc., you get the picture.  Common sense, but I’ll say it anyway.    

To learn more or to purchase Mo’s Dream Cream, visit https://squareup.com/store/modreamcream.  The lotion costs $20 a bottle and the stick costs $15.

And if you decide to purchase Mo’s Dream Cream or the No Mo Pain Stick, you can use the promotion code LESLIE4U that Keri has generously created specifically for my readers.  This will give you 10% off all products.  And it never expires!