The other side

When I was first diagnosed with lupus, I had terrible, terrible joint pain. I couldn't undress myself, I couldn't walk up and down stairs and whenever I sat down I always needed to be picked up. Now- thanks to rituxan or other drugs, I no longer suffer from constant joint pain. However, I still don't feel "good". I wake up everyday still achy, most days nauseous and it takes me about an hour or more to feel like a human again. I'm still fatigued, I still have headaches. I still HAVE LUPUS. I feel like most times just because my pain isn't outward, or I'm not complaining about it- people forget it's there. When I say I'm tired- I'm not being lame. When I need a nap, it's not because I'm lazy. I almost wish that my ailments were visible to the rest of the world. That way I wouldn't get dirty stares when I don't offer up my seat on the bus, or use the elevator. If my disease wasn't invisible, I wonder how different I would be treated.

Another form of discrimination?

My buddy Bryan so kindly agreed to bring me to Target yesterday.  I still get tired easily and can only go shopping in one store at a time.  When we got into Target I had the great idea of using one of those motorized shopping carts! (Bryan kept calling it a rascal, but I know that's not the correct name) that way I could sit while Bryan perused the underwear aisle. I began my journey by first asking the girl behind the service desk if I could use one of the rascals (i'm also going to call it that).  She gave us a "yup", so I sat down.  All three of the rascals were blinking, which indicated they needed assistance.  I again approached the girl behind the service desk; turns out I just needed to unplug them from the outlet they were plugged into. DUH.

           

As I began driving, I learned that the rascals traveled at walking speed and they were a bit difficult to get around the tightly placed racks in Target. We traveled around the store, giggling every time my back wheel got stuck on a display, or I misjudged and ran directly into a rack. We managed to make it around the entire store only causing minimal damage to the rascal and to the displays in the store.  

The last section we were shopping in was the girls clothes section.  The racks were placed most tightly and there were clothes and hangers all over the floor, making it the most difficult to bring the rascal.  I stood up and told Bryan to sit in the rascal while I quickly shopped around.  As he attempted to follow me, he ran headfirst directly into two racks that an employee just happened to be working on.  We of course began to giggle again.  Just because you're disabled doesn't mean you can't laugh...right? 

          

Apparently so, because the employee took it upon herself to ask us if we really needed the rascal.  I turned around, showed her the scar on my chest informing her that I just had surgery.  I also told her that it she shouldn't ask people that and that it was none of business.  Then I immediately started crying, unexpectedly.  She felt awful and kept apologizing and telling me to sit down and that she would shop for me.  But it was too late.  I was pissed off, and worse- I was crying publicly.  I continued shopping as stopped myself from crying.  I picked out a shirt that Bryan approved of and we left the womens' section.  On our way out the employee tried to say one more thing to me.  I ignored her, but Bryan acknowledged her and muttered a "thank you, she's all set".  

         

 We didn't complain to a manager, although we probably should have.  I just wanted to leave the store as quickly as possible.  That employee saw two young, healthy adults laughing and using a rascal.  Unfortunately, she couldn't see my swollen feet, or experience the pain I feel in my right arm or see the huge scar on my chest. I have an invisible illness, and I wish people would think twice before opening their mouths. 

XoXo,

jullz

Dear World

Dear world, please excuse me for wearing slippers in public. My feet are retaining water and slippers are the only things that fit. I have an invisible illness.
Dear world, please excuse me for not changing out of my pajama pants. It hurts to bend over and move my knees. I have an invisible illness.
Dear world, please excuse me for not putting on a bra. My elbows are swollen and arms throb with pain. I have an invisible illness.
Dear world, please excuse me for not doing my hair and makeup. My hands are tingling and hurt to the touch. I have an invisible illness.
Dear world, please excuse me for looking less than perfect and more like a slob while I run this errand.   I have an invisible illness, and the most simple tasks for you may be the most daunting and difficult for me.I HAVE AN INVISIBLE ILLNESS.
Dear world, Before you judge someone based on how they are dressed, take a step back and think of what that person may be going through. 


XoXo,
jullz

I've seen better days

Things usually appear to be worse than they really are. 

I'm sick right now.  Sick enough that I can't work, and that I've had to go to the doctors 3 times in 7 days.  But this post isn't about that.  It's not about the current details of the illness I'm facing.  It's about realizing that things are okay, and moving on.

So many times I see complaints about taking medications, or visiting the doctors office, and dare I say it- being in the hospital. 

Taking medication 2x, 3x, even sometimes 4x a day is frustrating.  It interrupts daily routine, it's hard to remember, it's inconvenient and even embarrassing for some.  But really, what is the big deal?  You eat 3+ times a day, don't you?  Your pills are your food, they help keep you alive and well just as much as food does. Let your medication become your routine.  I wake up with enough time to eat breakfast everyday, not because I love breakfast but because my first medications of the day say "Take with food".  My bedtime routine has become- take pills, brush teeth, set alarm, sleep.  Taking medication can be easily fit into your already existing routine.  As far as embarrassing goes, I know it may be hard to take pills in front of others.  But your friends and family will understand.  If you are in public, those around will be none the wiser about what pills you are taking.  You may just be a health nut taking vitamins and herbal supplements. 

Sickness is just a part of this disease.  Things happen.  Shit goes wrong.  We get infections, pains, spasms, and that's only touching the surface of the list of problems we get as lupus patients.  Don't dwell on it.  Don't complain and ask why.  Deal with it and move on.  If we spend too long focusing on what HAS happened to us, we will miss was IS happening to us.  And what is happening is that our life is passing by us, while we sit here in misery because we have an illness.  Allow your lupus to push you forward on the days you feel well, instead of holding you back.

As for doctor visits, they are crucial to your health.  Someone needs to be up to date with your blood work and medications.  If you are newly diagnosed, tell your work that you will be needing more days off.  Use the days as rest days, book a later appointment so you can sleep in, bring a friend with you and grab lunch.  It doesn't always need to be a dreadful experience!  

And lastly, hospital stays! Now even I have been known to be sad & depressed when I am in the hospital.  I believe it is truly one of the hardest times to be a lupus patient.  Being in the hospital removes you from your life, at a time that you are your most sick.  As hard as it may be, remember that you are still lucky to be living in a country where healthcare is available! Who knows how many of cases of lupus go misdiagnosed, or untreated.     

To sum up, Things could always be worse, count your blessings, and shut up and smile.  Life with lupus isn't all that bad 

TBC

So many wonderful things happening in my life, I will hopefully have time to blog about them all today! <3

LUPUS WALK!

https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=480495&supId=330757156

CLICK THE LINK TO DONATE!
Super excited about things happening in my life.  Updates soon

FUNdraising

I am so lucky.  Today I got to raise money for two fabulous causes, the Heart Walk and The Lupus Foundation of New England.  I love that I was healthy enough to walk, and that I have amazing friends to support me along this journey.  <3