Friends, How Many of Us Have Them?

When you're chronically ill, relationships are often tested. Especially with your friends.

The saddest thing that a chronically ill person could experience is losing friends over something that is completely out of their control.

Since being diagnosed, I have lost my share of friendships, mostly because I have become this "unreliable", "sick" friend that no one wants to "bother". Truthfully, I have been absent for a lot of special events, dates, or ceremonies, and it's not because I don't want to be there. It's just physically, I can't make it.

Eventually, your friends get tired of asking you to come places when they know it's a huge possibility that you probably can't make it anyways so eventually, the invitations either slow down or they stop altogether.

I have been blessed enough to have some friends that send me text messages inviting me out ALL the time or even dropping by my house to just check on me every now and then, but in the midst of my illness, I've noticed that people I thought were down for me, aren't. (and that's okay, it hurts but... it's all apart of life, right?)

Me, hubby, & friends going to see Black Panther

It's quite heartbreaking to lose people you've known for years, who you've grown up with and have literally shared everything with, all because your illness keeps you from getting out being who you use to be. I think a lot of the time, people assume I'm"changing" and let me just put it out there, when you have a chronic illness... guess what??

I HAVE CHANGED!! Everything about me has changed. My way of thinking, being, acting, EVERYTHING!!!

I fight for my life every day so things that used to matter, can't matter as much anymore because every day I have to persevere the energy I have just so I can make it. So excuse me if I can't make it to some of your events, or if I have to cancel at the last minute, or I'm not always available when you try to hang with me. Believe me, this is not the life I wanted. It's not the life that any chronically ill person wants.

But my friends though, my real friends, who have literally never judged me, always make themselves available for me (whether it's a ride to chemo, or holding my hand after surgery or a biopsy, or dropping off food when I'm sick) I appreciate ya'll! No words, or no actions can truly describe how much having a support system really means.

So when it comes to friends, I definitely have them... and they mean the world to me.

The Good People in the World...

With everything that's going on in the world, believe it or not, there are still some good people in the world.

So, my husband and I went out on a date, BUT before we went out, I had a flare-up. Feeling guilty that I haven't been able to go out on a date with my husband for a while, I pushed on through my flare up and decided to go out for dinner.

So, we get to the restaurant, sadly all the handicap spots were taking so we ended up parking far from the building. I'm walking with my cane, huffing, and puffing, barely making it. I finally get to the door and the waiting room is PACKED! Nowhere to sit. So, I stood there for a while and finally, a young lady offers a sit next to her because she notices me leaning over barely standing.

I thank her.

We have a brief convo.... and then....

Host: Sanders party of 2!!!!!!

(So here's where the good in people happened)

I ended up getting stuck in the chair I was sitting in. Like my legs literally gave out. Not only that, but my right arm has gone completely numb from walking with a cane so hard. My husband is trying to hold our coats, and my purse aka my suitcase AND help get me out the chair all at the same time, mind you.... I am NOT skinny or lightweight. (bless his heart!)

So the lady that offered the seat next to her and another complete stranger ends up helping me out the chair. I'm not talking about a slight lift, they HELPED ME OUT THE CHAIR and fixed my clothes on the way up. Helping pull down my shirt cause I'm pretty sure I was flashing the innocent. 😡

Now, I know it doesn't seem like much, but being disabled in America is NOT EASY. We lack so much support from not only the government, but some of us face neglect from our jobs, family, and friends, so the fact that two complete strangers went out of there way to assist me, it meant a lot.

I couldn't thank them enough, and I probably thanked them more than they wanted, but I just appreciate people that can help people like myself because I know if I was able-bodied, I would do the exact same thing.

Am I there yet?

*this picture is hilarious, and it's so true!*

Why make an appointment when what's really going to happen is that you're going to be waiting at least a hour past your appointment time in the waiting room?

What's worst is that, when you're finally out of the waiting room... the nurse will just slide you into another room, and you end up waiting ANOTHER 30 minutes or so.  

This seems to happen to me every time I go to a doctor's office. What makes it even more disappointing is when you FINALLY see the doctor, they're rushing you out the room like they've been waiting for you for the past 2 hours.

The whole situation just makes me sick to my stomach. I honestly think that on down the line, that doctor's tend to loose their humanity in their profession. They begin to look at their patients as dollar signs and not regular people. (I can only imagine how doctor's treat patients that are uninsured.)

I can remember when I was first diagnosed with lupus. I had questions. I was scared. I wanted to know how this disease would affect my life. When I finally got to talk to a doctor about it, she was rude and so inconsiderate. I could barely get any questions out before she decided to end the appointment herself and walk out the room.

I was hurt and angry.

I never like to wish bad upon people, but I honestly think that people don't understand what you're going through until they have to go through it themselves. If doctor's would put themselves in our shoes, and relate to us a little, I can bet that waiting room times would be shorter, and appointments with patients wouldn't be rushed and signed off as just some other patient.

Now....

Is it just me or do any of you guys see what the receptionist will do after your appointment? They overbook appointments, causing a huge delay between patients. (Which is very inconvenient for us lupies who schedule appointments during our lunch break because you can't take off work *ahem*) and they rarely have times available that are good for you. Don't ask me what would be a good day and time for me, and when I tell you, you're always booked? What's even the point!?!?

But anyways...

The whole fact of the matter is that getting to actually SEE the doctor and discuss symptoms and progress is a total journey within itself... so as I journey from waiting room, to another room, to another, I just have one question....

Am I there yet?

Feeling Beautiful..

Let's face it.

One of the hardest things for us lupies to do is get out of bed.
Let alone, fall asleep.

But when we finally get out the bed, we have to get dressed.

It takes every bit of my energy to brush my teeth, wash my face, shower, and do something remotely neat to my hair. After I've done all the basics, everything else just seems irrelevant. So, with that being said, it's very hard to feel beautiful when you have no energy to put into do all the work to make you look beautiful.

I have lost the confidence of feeling beautiful. I use to go to the nail shop every two weeks, maintain my weight (even just a little), I wasn't a make-up wearing girl, but I'd at least throw on some mascara. All of the things that I use to do to make me feel beautiful I just don't have the energy to do anymore.

Now some things are out of my control, for instance... I've lost hair with my chemotherapy and since I've been diagnosed, I've been on a pill called "prednisone". In a few blogs back, I discussed how hungry that pill makes me... now with hunger comes fat... then with fat comes not being able to fit in your regular clothes... THEN with not being able to fit in your regular clothes comes feeling fat and helpless. YUP! That's the stage I'm at now... FAT & HOPELESS.

Truthfully, I tried the diets that they have out there for lupus patients. I've completely given up red meats and pork, and I try not to eat after 7pm. My weakness is snacking. Throughout the day I snack on fattening things (*sigh* I need to do better) and I never exercise (*sigh* I so need to do better) it's just I put all my energy into going to work and when I get off work I am dead beat tired.  (Shout out to all us lupies that are getting up going to work! It's HARD!)

I also suffer from the butterfly rash that likes to show up during the worst times. And let's face it, we live in a society were you are completely judged on how you look. Can you imagine showing up for a job interview or going anywhere with this on your face..

I'm looking in the mirror every day noticing the change that my body is going through and it's the ugliest thing to see. I swear, I try to avoid all mirrors at all cost. I try to tell myself, "Girl, you are wearing that dress!", or "Girl, you're smokin' hot in that outfit!"..., it's really hard to have that confidence when in reality I know what I use to look and feel like before I was diagnosed.

What's a girl to do?

Random Lupie Vent

Let me forewarn you... I am randomly venting.

I find myself wanting to lay in bed, be anti-social, and read books that I've probably read over a million times. It could be the increase of prednisone (who am I kidding, that is what it is!) but I am ALWAYS conflicted with my sleep schedule.

I'm always wanting to lay in bed, BUT while I'm there, I am wishing I was up doing something. (Sounds weird I know!) But that's just how crazy my medicine have me. I'll climb in bed at 9pm (hoping for a good sound sleep) and 2 or 3 hours later, I'm staring at the ceiling or watching Golden Girls wondering why I hadn't fallen asleep!! I'm thinking to myself... "I could've SWORN a hour ago I was exhausted!!!"... MIND YOU, I have to get up for work in the morning, and  the result is usually me being sluggish ALL DAY because I didn't get to sleep till 1am in the morning.

AND LET ME NOT GET ON THIS WEIGHT GAIN... Sooooo, I've never been the type to watch my weight, I figured "Hey, I like french fries, pasta, and bread... I don't think loosing weight will be an option for me right now!".... HOWEVER, since I have been diagnosed with lupus, I have tried different ways to possibly reduce inflammation in my body, and although its not 1,000 percent effective, I do feel good about myself trying to heal my own body naturally.... SOOOOO from eliminating some of the foods I use to eat, weight kind of just "fell" off...

Soooooooo, with that being said... I have probably gained over 20 pounds pilling up steroids in my body in the past few weeks. NOW I'M PISSED! All this time I was eating my bread and pasta, I maintained weight... NOW I get a dose of medicine to help me and then the weight comes!!! OMG! How backwards is all of this!! I'd rather the weight came from my french fries and burgers (since I knew it was my fault from eating all of that!) INSTEAD it's totally against my own control... *speaking off... I'm hungry for some shrimp and pasta right now*

Ohh... Ohh... Ohh...

and let's not talk about all the blood that doctor's have to take when you go to an appointment! *rolls eyes* Like, couldn't you get ONE TUBE, and share it among all the different test you have to run! I truly doubt if they are using ALL 9 tubes of blood to run maybe 3 or 4 test. Like, are you guys secretly selling my blood for a profit or something. (Probably so!) and then STOP BRINGING in these INTERNS that have no clue on what they are doing! I swear, if I meet another nurse that does not know how to get the vein the first time, I'M GOING TO SCREAM!!! Stop playing around with my arm, and bring a professional in here before I throw my $2 old navy flip flop at you! *smile*

I'm done. *sigh*

Love and Lupus

I admire any man or woman that's willing to be in a relationship with someone that has lupus. Not only are us lupies in and out of doctors appointments and hospitals, but we take medicines that makes us an emotional wreck and in some cases interfere with our physical appearance that can conflict with our confidence.

Not many people are built to be that support system that we need and love us regardless of what we may feel like, or look like, and I can't judge them or blame them. Some days we don't want to go out on dates, we'd rather stay home.... Some days we don't want to talk, we just want to lay in bed.. Some days we don't want to move, we just want you to sit with us. It's different being in a relationship with a lupus patient because we need stability in our relationships that consist of a caring and understanding attitude that's willing to put up with our emotional mood swings and the fade of our beauty at times.

A few of the meds that I take have literally made my hair fall out, I've gain weight, and weirdly enough, they cause me to cry at random times throughout the day. (Who would have thought huh?) Another thing lupus patients worry about is having a family with someone that they have fallen in love with. I'm going to be honest, I'm totally freaked out about having children because of lupus. I'm scared that I could become ill and something happens, and I'm scared that I'll be unable to handle the stress of being a mother. Now a days, if you date someone, you're more than likely dating someone that wants to settle down and have a family and build a life together?

I've seen many lupus patients have successful relationships, and go on to get married and have kids (huge kudos to those people loving us lupies) and I've grown to accept what I can and can't do in a relationship, however, I sometimes feel guilty being with someone putting them through what I have to go through! Can any one relate?

Are you my doctor!?

So, I've recently moved back home to live closer to my support system and I must say, it's definitely a challenge. I have lived on my own since 2004 and moving back into the house were I grew up made me feel as though I was taking steps backwards in my life. People tell me, "Nae, you have lupus, you couldn't help that you ended up in the hospital." .. Yeah, yeah... That's very true, but it's so hard being home because now everyone wants to diagnose me and tell me what I need to do and how I should do it to get better.

Okay people without lupus... If you don't listen to anything I tell you, listen to this: PLEASE DO NOT TELL A PERSON WITH LUPUS WHAT THEY SHOULD DO TO GET BETTER!!!!

Save yourself the breath and save us the time from listening!!! You telling us what you think would work only stresses us out and makes us want to throw rocks at you till you fall unconscious!!! Like seriously, don't you think we have already researched every possible thing we could do that could help us stop this everyday pain we experience. Welp, if you don't know... NOW YOU KNOW!!!! 

 

Okay, let me calm down. *whew* I'm sorry.... I flashed back to how some people can be such idiots!! *ahem*.......

Now....Us lupies do understand that some of you come from a place of concern, and we appreciate that, but PLEASE believe that we don't want to be sick, and I am sure that we have ALREADY tried any and everything out there to our best ability to heal ourselves. What we need people for now is support! We understand that this is a disease that you may not understand and all you want to do is help (because who wants to see someone they love and care about in a constant pain) but don't act like we aren't trying to feel better, we are fighting every waking moment to get some kind of relief for ourselves. 

Try sending a inspirational text, or calling to check up on us... Believe me, it does us wonders!! Just the fact that we cross your mind and you want to know the update on us gives us exactly what we need. I'm not sure how other lupies are and I can only speak for myself with this but the best thing someone can do for me is tell me that they are praying for me. Since I genuinely believe in the healing power of prayer, you are honestly giving me comfort by praying for me and everyone else that has this disease. 

So please do me and us other lupie warriors a favor.... BE OUR FRIEND, NOT OUR DOCTOR!!