Lupus Life Lessons...and more...
We live in a society where the trending topic alongside the horror in Paris is "Jennifer Lawrence tripped on red carpet". Really? That's what is trending right now... I could not care less who trips, falls, stumbles, etc. Honestly, that is what spurred me to write this blog entry. We ALL TRIP! We ALL FALL! The real challenge is...... do we get UP? Do we dust ourselves off and start again? Or... do we waddle and cower in our own self-pity and misery.
I have Lupus. IT SUCKS! It has taken:
* The ability to have children (3+ miscarriages)
* MY teeth (See below)
* My "good years"
* My "career" (at least my teaching career)
* My smile
I could SO give up and just throw in the towel. My life changed at 23! Yes, I had JUST secured a teaching position and *BAM* Lupus. I wanted to just stop. I wanted to give up on everything. But, my mom would have kicked my butt. She's one of those "Italian I love you but I will guilt you to death and kick your butt" moms. She went to college while I was in college, worked 2 jobs, raised 3 children, and became a nurse WHILE having Lupus herself.
I've finally found a job that is flexible enough to work around "lupus flares", doctor's appointments, and life. You know what is the best... it makes me FEEL GOOD. I feel worthy and I felt worthless before because with "All my education" (And yes I heard that quite a lot) I was not bringing in a paycheck. This job is MORE than a paycheck. It's a lifesaver. That sounds corny but I'm more like my mother than I would have ever thought.
She always threw herself into work to deal with stress. Now, it's my turn. I have a horribly abscessed tooth (on antibiotics) though that does NOT help the pain, I don't have the money for the oral surgeon (as I'm allergic to novacaine I can't have a regular dentist), and I'm just "dealing with it". I'm also dealing with the fact that I take 18+ pills a day to keep myself "healthy" and they destroyed my teeth. It's a fact. Am I mad? Yes. Am I going to give up? No!
Instead, I made a plan:
Work as much as possible to save money for oral surgeon and replacement teeth (A temporary bottom plate)
Deal with the pain
Try to keep the infection down with antibiotics
Make a "GOFUNDME" account
These are my last back "Chewing teeth" The ones on the other side are gone.
(Please share this if you can. I'm not asking that you donate but any shares will help. I have broken it into 3 campaigns. The first is 1497.00 for surgery, the second will be 775.00 to get the bottom plate, and the last will be 0 since I have no clue what that step will be. I'd like to smile and eat by Christmas!)
The last part was SUPER hard for me. I DO NOT like asking for help. I HATE asking for help. I always help other people with whimsy and job but hate having to have people to help me. Honestly, it's not been super successful because I fear sharing it. I don't want people to think "Oh she wants a vacation or new makeup". NO.. well, maybe I do want those things but I don't NEED them. I NEED to be able to eat again. I NEED to be strong. I NEED the pain to end. So, each paycheck I have set 20% (or extra if I can afford it) aside for my teeth into the "GOFUNDME" account. When the pain has been AT ITS WORST ... I've THROWN myself into work. I've had some of my best weeks while dealing with the worst pain.
Now, here is the hardest part. My mom was diagnosed with throat cancer on OCTOBER 5, 2015. At first they said, "Oh it's a stage 1... a little surgery and radiation.." They were WRONG! As of Friday I found out it's a stage 3. If they do surgery she will lose swallowing function as well as speech. The other option is super aggressive chemo and radiation which "hopefully" will help the tumors but will decrease her voice and swallowing function. Next Friday they decide the course of treatment.
Am I mad? HELL YES. Am I giving up on her? HELL NO! I'm not throwing in the towel. She's dealt with Lupus issues, kidney failure (lupus side effect), respiratory failure (lupus), etc. in the past and never have I seen her like she is now. She is DEPRESSED. They WILL NOT let her work and that is what is MOST IMPORTANT to her. So, while other people would cry, wallow, and be happy to be out of work..... she's crying because SHE CANNOT WORK. She uses that as a stress reliever and she needs it. I don't know what to do right now. I've never seen her like this.
She knows I'm in pain. I won't and WILL NEVER ask her for money because she's not making any money right now. She's been on FMLA since she started having issues in September. She keeps telling me to get it done and just put everything else to the side but she doesn't realize that I DO have to pay bills. She doesn't know my finances and that isn't something that I WOULD EVER concern her with right now.
I've gone off on a tangent but the point is... I'm not giving up. I'm not giving up on my mom, my teeth, my health, my job, or me. While others would EASILY take the bait and throw in the towel or huddle under a blanket in misery; guess what I'm doing? I'm making soap to sell so I might be able to have oral surgery before Christmas so she doesn't have to worry about me more than she already does.
I'm trying to do EVERYTHING I can to fix my OWN problems. I may whine on Facebook about pain. But, I still work. I still laugh. I still help others. I still believe. I am praying and praying. I am doing my best to do what I can for my mother, friends, family, etc. When will I get a break. I even asked the oral surgeon if he would do a payment plan or discount tonight (No dice but I had to ask if he would consider social media services as a trade for part of the bill)
What was the point?
Oh, I could have given up at 23. I have no children. Lupus has made sure of that issue. I will eventually have no real teeth. Lupus has made sure of that issue. But, I am not going to cry about that. I will reserve my tears for my Mom. She's a woman that has dealt with Lupus for 30+ years, been a nurse, a mother, a caregiver, a shoulder, and rarely missed a day of work. Not only does she deal with Lupus but now cancer and worrying about me.
Is life fair? HELL NO! Can you try to be your personal best? HELL YES!
So, thank you "Lupus" for teaching me that even though I could "apply for disability", "throw in the towel" etc. that I am a stronger person. I WANT TO WORK. I WANT TO FEEL NEEDED. I WANT TO FEEL WORTHY.
And right now... I WANT THIS PAIN TO END!
Thanks for reading...
XOXO
