Monday, October 31, 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.   

Thursday, September 22, 2016

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 29th 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.     

Monday, September 19, 2016

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.

Monday, August 29, 2016

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.    

Wednesday, August 24, 2016

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.   

Wednesday, August 3, 2016

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.  


Monday, July 11, 2016

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!  

Wednesday, May 4, 2016

Blogging And Cyberbullying

I have been blogging for over eight years now.  I’ve had my fair share of negative comments and people disagreeing with me over things that I have written.  That doesn’t bother me.  Just as I have the freedom to say what I want, so do other people. 

And this has never been a problem.  Until now.

But what I have experienced over the last several months goes beyond negative comments and criticism.  These comments hit below the belt, and quite frankly, they are not true.  And they make me sick.    


I can’t imagine that anyone in the chronic illness communities I am a part of would make comments like these.  They would simply not comment or stop reading my blog.  In the eight years that I’ve been blogging, I have never received malicious comments.

I have a pretty good idea about who is making these comments because they mirror things that have been said in the past in other venues (which I have evidence of, as well).  My blog is also the only possible way that this person could get to me at this point.  And it needs to stop.  I went quietly, so it’s time for them to get over it.  It’s time for them to stop projecting their own insecurities onto me.  It’s time to grow up.  And it’s time to leave me alone.   

Because if this continues, there will be consequences.  I have already contacted Google about this, and am working on tracking the IP address to prove that the person who I think is posting these comments is indeed the person that is. 

Negative comments are one thing.  Slanderous comments that call my character into question are quite another, and this is not okay. 

Cyberbullying is real.  And I fear that as bloggers, this is something that we might all face at one time or another.  I never really imagined that anyone would post such nasty comments on my blog, but there are people in this world who thrive on trying to tear other people down.

But I won’t be torn down.  I’m fighting back, and this is the first step in that fight. 

Comments such as these are not okay under any circumstances.  And honestly, if you are going to write comments like this, at least have the courage not to stand behind the veil of anonymity.  Because you’re not really anonymous.  I know exactly who you are and I’m going to prove it. 

Cyberbullying is a crime, and is punishable by law.  So whoever is doing this, for your own sake, stop.  It’s not really worth getting in trouble over.  Worry about your own life, and let me worry about mine.    

Monday, April 25, 2016

Deeply Rooted Connections*


Last weekend, I had the opportunity to travel to Chicago to attend HealtheVoices 2016.  This year, the conference was put on by Janssen, as it was last year, but this year included the addition of Everyday Health.  The unique thing about this particular conference is that it brings together online health advocates who have a variety of health conditions. 

The theme of this year’s conference was “deeply rooted connections” and this was seemed particularly appropriate to me. 

The conference coincided with a major milestone for me.  I’ve been blogging for eight years.  That’s so crazy!  I can’t even believe it.  I wrote my first blog post on April 17, 2008.  I didn’t even really know what a blog was.  All I knew is that I felt totally alone, and confused, and I needed a way to process all that was going on.  The conference really reminded me of where I’ve come from, where I’m going, and why I do what I do. 

I was so inspired by the other amazing health advocates at the conference.  I learned about legal issues as they relate to blogging, and the importance of taking care of ourselves, avoiding compassion fatigue, while also attempting to take care of others. 

I got to see some old friends and got to make some new friends.  I love how when we all get together, we can act silly, while also understanding the difficulties that we experience living with chronic, incurable illnesses; and the impact that traveling and being in unfamiliar environments can have on our health.

I think that a conference like HealtheVoices forces us out of our comfort zone.  It makes us move beyond our own silos.  But it also reinforces that while we may have different diseases, much of our experiences that we have as chronically ill people are the same. 

One of my fellow advocates at the conference made a comment that when she was searching for support for her disease, she found it through other blogs, which she called “hope with skin on it.”  That really resonated with me.  I really hope that this blog has brought hope to others with lupus and rheumatoid arthritis, and to those with other chronic illnesses, as well.    

I started this blog eight years ago as a way to keep my family and friends updated on my complicated, ever-changing medical situation.  It was exhausting to rehash the same story over and over again.  And quite frankly, it was often easier to write about it than it was to talk about it.
 
But what started as a way to keep people updated, turned into something so much more than I could have ever imagined. 

I am so grateful for all of the amazing opportunities that have come my way as a result of this blog.  And I am so grateful for the amazing people I have met, and even more grateful to the ones I can now call my friends.  These deeply rooted connections are the most important thing that this blog has fostered, and I truly don’t know where I would be without them. 

So thank you.  Thank you to Janssen and Everyday Health for allowing me to be a part of HealtheVoices 2016.  Thank you to all of my readers who have been there along the way, who have supported me, and who have celebrated the triumphs and mourned the tragedies.  This blog would be nothing without its readers.  And it still amazes me that there are people other than my mom that read this blog.

So I’ll keep writing, even if it is not as often as I would like, and I urge you to please keep reading.  Please continue to follow my journey, and hopefully you will learn and gain something along the way.     

* Janssen paid for my travel expenses, but all of the opinions expressed here are my own.  

Thursday, April 14, 2016

Product Review: Pill Suite

Disclosure:

**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. *

There are all kinds of pill cases on the market, and many of us with chronic illnesses that take multiple medications struggle with how best to store them.  One alternative is the Pill Suite.  The Pill Suite allows you to individually package your medications for single, one-time use. 

Basically, the system consists of a pill case that you can divide your pills into.  You then turn the funnel so that each divided section goes into its own “suite” (bag).  Once the bag is filled with the pills, you put it under the sealer, hit the button for a few seconds, and it heat seals the bag so your pills are safe and secure.  Each “suite” is one-time use only.  Once you’ve opened it, you cannot reseal it. 

The bags aren’t the best quality, and I sometimes struggled to rip them off without ripping off the part of the bag that is needed to open the bag once it is sealed.  If you do it very carefully, you can get the bag off in one piece. 

For me, personally, I can’t see using this every day.  This system is convenient if transporting medication bottles and a weekly pill organizer isn’t practical.  I guess for some people, that’s never practical and this system is perfect for those people, who may take so many medications that they don’t fit in any standard pill case.

The other issue I had is that the button on the sealer is made of very hard plastic, and even though you have to press it for just a few seconds, it’s not totally arthritis friendly.  So this is another reason why I can’t see using this all time.  But if your fingers/hands don’t give you trouble, then this really isn’t a consideration for you.        

In order to give the product a fair try, as an experiment, I doled out my pills for an entire week.  It took me probably at least three times the amount of time it would take me to dole out my pills for the week into a standard pill container.  I actually have a weekly pill organizer that I really like, but I know that there are people chronically searching for a weekly pill organizer and they never find one that they like.  So maybe a system like this is perfect for someone like that. 



I will say, it was kind of nice that all of my pills fit into a sandwich-size Ziploc bag.  It was much flatter than a normal pill case.  However, it took a bit of searching to make sure that I was picking the correctly labeled suite.  And if I would have happened to forget to take a dose, I might not have noticed as easily as when my pills are organized in a pill case. 

When traveling, I often struggle with how best to transport my meds, and this system would definitely be ideal for trips.  This system is also useful if you want to carry a “spare” set of pills with you at all times, and you want a very compact way to do that.  I can definitely see using this for travel.

You can write on the bags – best to do that when they are empty – and this allows you to customize them however you want. I needed to have two bags per day, one for morning meds and one for night meds. 

Some of you may have heard of Pill Pack, which is a system that allows you to get your pills pre-packaged for you into single serve pouches, similar to the ones that come with the Pill Suite.  If you like the idea of Pill Pack, but your pills change too frequently for you to take advantage of that, the Pill Suite is great because it’s the same concept but you can do it on your own, even when your pills change.   

Again, for me I think this is a great solution for traveling with medication.  I personally wouldn’t use it every day, but the reasons that hold for me might not hold for others.  So if you’ve been looking for an alternative to the traditional, bulky, plastic pill cases, this might be the perfect system for you. 

The Pill Suite system comes with the pill case that allows you to funnel your meds into the bags, the sealer, 400 “suites” (bags), and four AA batteries.

For more information, visit www.pillsuite.com,