Jul's chronicle of coping and living with SLE - FIGHT!
That's what I knew I had to do if I ever wanted to have anything resembling the former me. When Lupus SLE knocks on your door and says “hello, not only have I wormed my way into your bodily system and I am here to stay, I am going to try to screw up your life or possibly even kill you” you can only do one of two things, give in or fight! I am not really a “give in” type of girl so for me, it was a no brainer. I kept my condition hush hush, just close family and friends and prepared for the fight of my life. Lupus did manage to knock me on my butt before I got my punches in!
I am networking with many totally awesome and amazing “Lupies”. It makes me laugh to even type that because we are anything but! We all however, share a common theme… we are in this for life and seeking a managed lifestyle with it. So many of us are at different stages. Some are desperate and broken-hearted, in so much pain and helpless with very little help from friends or family. Some are in “Flares” (the term used when the disorder is active) that they have been in and unable to come out of for years, some have organ involvement and other serious complications that come along with Lupus, and some like myself go in and out of “flares with crushing fatigue, sore throat and flu-like symptoms only. We are Nurses, Dr.’s, Authors, Stay-at-home Moms, and Artists – people from all walks of life. We are 16-60 and everywhere in between. We all know things will never be the same but are seeking a life that is manageable and livable with Lupus and trying to find our new ‘normal’. Anyone who has this knows there are plenty of stages that are not livable. There are so many different forms this disease takes on. It effects everyone uniquely and there are usually so many other health complications we all suffer from, desperate to know if they are somehow "related”. The predictables are:
1) It will take EVERYTHING from you if you let it – so don’t let it!
2) There is a significant amount of self-pity, fear & depression each person must go through so don’t be too hard on yourself for feeling these feelings
3) You will probably go through the 5 stages of bereavement, lingering on the denial and focusing (at least for me) on the ANGER! For me it was something like this: I HAVE WHAT?? GO TO HELL LUPUS! You will not get my vibrancy, personality, life, relationship or steal any more precious time from my daughters. They are why I fight!
4) This is my favorite – We are MESSY and complicated for Doctors! I know my friend Tamura is smiling while reading this one. They like blood, broken arms, stitches, puke, mono, heart attacks, strokes, flu, cancer or anything that can be defined and cleared up or medicated quickly. They don’t like it when they have a patient that is very ill but still looks good and has perfect basic blood work. We scare the CRAP out of them. I had my share of terrible Dr.’s (who I won’t embarrass here but should be very uncomfortable with all of the social networking sites out there that could expose them with a click of a button). I also had my share of very caring go-the-extra-mile types that stuck with me. To the Dr.’s that said “you’re just a stressed out mom” without bothering to test for anything, I have one word for you: K A R M A. To the Dr.’s (my new GP, Endocrinologist, Hospital Dr.’s) that went the extra mile and cared – words cannot express my thanks and devotion. You truly deserve the title “Doctor”.
5) Sadly, your friends may call and text less. They will come around though after you have a diagnosis and they know what to say to you. Don’t take it personally; they are just scared to see their normally healthy friend hurting.
6) There are people who will stand by you no matter what you look like, smell like, or feel like. They love you (whether as a friend or lover) and I have one word for you beautiful people: KARMA
Without the fight and anger I don’t think I ever would have recovered to the point of managed. I have so much to live for and could not comprehend at the age of 40 that the rest of my life was going to be spent living or focusing on SLE (Systemic Lupus Erythematosus). If I had a $1.00 for every time someone said “you have to keep a positive attitude” and “hopefully you will feel better tomorrow” or my personal favorite “but you look great” I could go on a nice little shopping spree. That is great advice and things to say to someone for the first 3-6 weeks but at the 12 week marker (without a diagnosis) they become somewhat inappropriate. It still baffles me that in this day and age of modern medicine a diagnosis would take more than 3 months but what the heck do I know? I only discovered that my Anti DNA (DS) AbQn – Lupus - came up positive and my former (I emphasize former) GP not only forgot to share that with me, he totally ignored sharing the whole ANA lab work with me…
I was a work-out every single day type A personality until I returned home from a beach vacation April 3, 2010 extremely ill. From April until July, I lost 20 pounds and went undiagnosed. It took 3 months, tons of vials of blood, many Dr. visits, many MRI's, Tons of CT's (I may glow in the dark now LOL) and even more X-rays, 2 Barium Swallows, 1 Upper Endoscopy, a 24 hour PH Monitoring, More swallowing studies at Baptist/Wake Forest, 5 scopes down my throat, a cardiac stress test/Sonogram, lots of internet research, a very dangerous glossopharyngeal nerve block by one of the most capable Dr.'s in the Country, and 4 ER visits before anyone decided I was so bad I needed to be in the hospital. The day I went into the hospital I felt like I was dying. I can’t describe the feeling, I just felt so bad that I truly thought I was dying. It could have been that my blood pressure kept crashing at 66/30 and stuff like that too but still, I felt terrible from head to toe and wanted to be knocked out on the best ‘put her to sleep kind of drip drug there was’. It was 3am in the morning and a Nurse and CNA layed their hands on me and openly prayed, something that is performed without thinking in the South. It took 11 days of hospitalization and a team of high profile Dr.’s to get me out of that flare but I came home feeling somewhat like the old Jul. I started slowly working out again and caring for my house and family and was thankful for the normalcy of being able to go to the mall to purchase shoes without feeling completely wiped out.
Managing Lupus is without a doubt the hardest thing I have ever gone through in my life. The disease itself is bad enough, but the lack of compassion can leave you feeling wounded and hurting beyond recovery. The despair and downright hopelessness of being unable to laugh and play with your children, or even perform every day normal parenting, engage with your significant other, maintain friendships, go to the gym, grocery shop or just do the normal every day duties that we all take for granted can swallow you whole. I dove deep down inside myself to find strength I didn’t even realize I possessed to cling to. I had faith that I would eventually get a diagnosis. There were people in my life that criticized me harshly when I was that crumbling-quivering-scared-unable to function mess of a woman before my diagnosis. Those are the same people that do now not doubt the validity of my illness today, now that it is all tidied up with a “name”.
To my Lupus friends, never give up – never give in. Every time a Dr. gives up on you forge ahead. Find internal strength to keep going until you find one that will go that extra mile and believe in you. They are out there you know (the caring Dr.’s), just have faith that God will point you to them. Print this off and take it to them if you need to. You know your body best. If you feel something is wrong it probably is so keep pursuing it. Maybe someone reading this blog doesn’t even know there is anything called ANA blood work and it may help them in some way. If you have a myriad of unrelated symptoms and feel like (insert word of choice here) think Autoimmune quickly!
Thanks for reading,
Julie
