PG13 Warning… saying goodbye to 2010 very bluntly!

So it’s down to the last few hours of 2010 and I can say firmly that I will NEVER look back on it!  Time to ‘cowgirl up’ and knock back the Gin with disregard to the slow painful burn.  I won’t be bitter and spiteful about it; I will just smile and dismiss it as one of the worst ever.   What doesn’t kill us makes us stronger right?

The not so good:  I have had to be tough, and by tough I mean REALLY thick skinned tough this year.  Lupus brought the challenges that kicked my ass.  Not only did it kick my ass, it literally wiped the floor with me.  It put me at 100 lbs, it put me in the hospital, it left me dazed, confused and learning how to be the new Julie without taking away too much of the old Julie.  It took precious time away from my family, daughters and friends that I can never get back.  Lupus has taken a lot from me but… AS LONG AS MY HEART IS STILL BEATING IT HASN’T TAKEN EVERYTHING!   So I will raise my glass tonight and say screw you Lupus.  So far, with God on my side, I win.

The good:  I have never appreciated life more than I do right now.  I never really realized how fragile we all are and how fragile life is until I was in danger of losing mine.  Maybe that’s the lesson out of this diagnosis.  We can be perfectly fine one day and dealing with a living hell overnight.  Maybe we need to be shocked into realizing the beauty that is all around us that we take for granted.  We are here for such a short time and the things that consume our time aren’t even things that will help us in the end.  Everyone seems so concerned about the size of their home, the size of their bank account, the luxury vehicles they drive and the designer clothes they wear.  It’s like everyone is living the photo shopped life and making themselves believe it is real.  Like busy little ants, scurrying around building their material empires.  In the end, none of it will matter; it will be the sweet things we said or did that will become our legacy.  

I started out saying “why me?” this spring and now going into 2011 I am saying “why not me”?  I can take this because I am me.  I have gained new strength and perspective and for that I truly am thankful.  I have found out who really matters, who never will, who my true friends are and made new friends along the way.  I have learned that unless you love the one you’re with you are not living, just existing.  I feel so sorry for all of the people out there that just exist.  I choose living!   

Cheers and bring on a Happy NEW Year!appH

Julie

HO HO oh NO!

With Lupus you never know what any given day is going to bring you.  You never know if it’s going to be good or bad so you just take it one day at a time.  Roll with the lows and take advantage of the highs.  I have been doing great lately but recently I overdid it and I hit the proverbial “brick wall” of fatigue that is so common with this SLE disorder.  

I was having one of those I feel great and can do it all kind of days, and decided on top of everything else I had done (housework, Christmas shopping, laundry, dinner, etc.) that I could squeeze in time to wash my bed comforters.  I have my own washer and dryer but the big triple loaders at the Laundromat are mega fast and fun to use so off to the Laundromat I went.  Ok, Ok, the machines aren’t fun to use; it’s totally a time thing.   There is something so relaxing about being in a Laundromat in the middle of the day.  It’s warm, there is a lot of soft machinery noise and it smells wonderfully like April Fresh Downy.  I thought at the last store I had been at that I felt like I was slowing down but I dismissed it.

After I loaded the comforters in the washer and started the machine I felt the horrifying fatigue and malaise.   It hit hard and fast as usual so I quickly sat down in one of those cheesy blue plastic body forming chairs; you know the 70’s retro type that are in one line attached at the bottom by one long piece of metal? I am thinking this can’t be happening now!  I just got back from a trip to Kentucky, spent hours in the car, endured hotel stays, started working out again, Christmas shopped early, and had the tree up and decorated the 1^st weekend in December and have been FINE. But I did it all in preparation for this:  an unexpected flare, frigging PERFECT!  *drips sarcasm and grits teeth*.  Well there goes my Martha Stewart image for the day!

I put my head in my hands and cried.  There was a Hispanic family near me that noticed, began talking real fast in Spanish (undoubtedly concerned about my tears) but I didn’t care – the tears kept coming.  I cried through the soak cycle and wash cycle, sniffled through the extract cycle and was finally was somewhat tear-free by the tumble cycle.  While all of this was going on my Blackberry was beeping and buzzing the latest texts, emails and facebook stories of the day against my forehead (I had it in my hands when I sat down).   I tried to answer texts from my friend Tamura and get the eye make-up that ran all over off my face with my sleeve.  I was supposed to be going to gym with her later and meeting a new trainer but knew I had ‘blown’ it, he would have to wait until another day.    Fan-freaking-tastic!  I have been fine and seriously??  I am having a meltdown in the middle of North Carolina in a Laundromat for Pete’s sake.  I wish I was not such a type-A personality.  I set the bar high – too high.

I wonder if the Hispanic family judged me.  They looked like they felt terrible but could apparently speak no English.  There was no way for me to let them know I was sick  The lady at the last store I had shopped at prior to the Laundromat was rude and assumed I was walking slowly down an isle just to piss her off.  She couldn’t wait to briskly walk by me and give me a dirty look.  It wasn’t her fault, she judged me and had no Idea my energy was declining due to a disorder that causes fatigue.  I myself pretended I wasn’t slowing down why should I expect her to understand?

I wonder how many people judged Michael Jackson because he always had an umbrella held over him in the sun.  It wasn’t their fault that they didn’t know he had been diagnosed with Discoid Lupus and even a touch of sunlight on his skin could be harmful to him.  Or maybe they laughed at him because he wore a mask outside; not knowing that the Lupus causes our immune systems to go so out of whack that even getting a normal cold from someone could turn deadly.  As for Michael in the wheelchair, he most likely was suffering from terrible joint pain and was not too lazy to walk, just sore and fatigued.  It is for these types of reasons that I don’t judge people.  

If someone is going 90 down the freeway and cuts you off think possibly they are rushing to the ER for some emergency.  Maybe the lady you see in Wal-Mart who appears to be on drugs and has been stumbling around shopping and then collapses isn’t on drugs but has cancer, has been given 2 months to live and wanted desperately to buy her last Christmas presents for her family herself (true story that happened to my friend Erin who was greeting at Wal-Mart to earn Christmas cash).  Whew, okay my rant is over.  

I am hoping that all of my friends and family members have a blessed holiday.  Since I only get one shot at life and there are no re-do’s I am taking extra time this season to hold my daughters a little tighter, talk to my friends and family a little sweeter and love with my entire heart and soul.   Merry Christmas

Peace and Blessings,

Julie

Happy Health and Halloween 2010 =)

The fall air is so sharp with the smell of leaves.  The air is warm and the slight breeze is blowing the fallen hues of red, orange, yellow and brown crispy leaves around my still green grass that is now dew-laden and sparkling in the sunlight.  Birds are sunning and bathing at the backyard fountain, coming and going every few minutes.   I have a hot cup of pumpkin spice coffee in my hands, savoring the extra dash of creamer and strong brew.  A morning like hundreds of others only I truly see the scenery in a different light.  A much more slowed down and appreciative light.  Why is it that I never realized how beautiful the scenery out my own window is? 

I love the sun but appreciate it even more because of my Lupus.  I know spending too much time in it could cause me to go into a dangerous flare but I still walk out into it during the day and raise my face directly at it.  I close my eyes but love that It feels so warm and wonderful.  I would love to be able to enjoy it against my skin for long periods of time but can’t.  I will savor a few minutes here and there and be thankful that my skin will be porcelain and pretty for the rest of my life.  

I am still kind of in a daze over feeling as if I have lost the last seven months of my life, let alone the fact that it is already October 31^st.  It was just getting really warm in April when I became ill and it was at the prime of summer when I was hospitalized.  I spent the month of August getting used to my new Lupus diagnosis and medications that I must now take to manage this disorder, and September and October trying to get back into the swing of life, loving, praising, parenting, jewelry design and just trying to find the new “me”.  I missed the warm days swimming in the pool; daily walks/jogs with my friend and neighbor, driving to meet up with my best friend and her daughter for picnics in the park while our 7 year old daughters play fight tolerate each other.  I didn’t travel, take my youngest to any theme parks or spend any time walking hand-in-hand on a beautiful beach.  I did do one thing…. Survive!

There are so many things and people to be thankful for each day.  Today, I am thankful that I am well enough to walk around with my little Medieval Princess while she collects candy at the Trunk-or-Treat Church party and then Trick-or-Treating with friends.  My 18 year old attended a more grown-up party last night and is driving back to her college today.  I hope to see her on her way through.  I thank God for allowing me to witness another day of my daughter’s smiles.  Happy Halloween 2010!!

thanks for reading today,

Julie

Life, Love and the pursuit of normalcy etc.

An Internist I had in the Hospital in July recommended that I let go of (ok, so technically fire but “let go of” sounded less bitchy) two of my Dr.’s and try out two that he felt were better fits. Apparently he knew what I had sensed; these two particular Dr.’s I currently had weren’t the best that were available to me. I took his advice and he was definitely right! One of the Dr.’s is the ALL IMPORTANT Rheumatologist that is responsible for testing and helping me manage and stay on top of the Lupus and related issues. Very seasoned and has many years of experience. My ‘Rheumy’ did more extensive blood work hoping that I was pulling false ANA/Lupus positives, which made me very hopeful too, but then I got the letter on the day of the follow up with my Rheumy… “Dear Ms. X, after extensive testing, it has been determined that you DO indeed have Systemic Lupus Erythematosus, blah blah blah blah blah because that’s all I read after the first line. Although the final diagnosis wasn’t a shock, it was still like getting punched in the stomach by seeing it in writing. I was actually beginning to believe that maybe it was some big fat mistake. Darn!


I have been feeling much better week by week with only minor setbacks. Actually, at times I have felt great but am definitely not disillusioned about my condition. I am finally at the point where I can enter a grocery store and not feel nauseous! YAY! I actually got some of my appetite back and cooked some meals this week. YAY! So you’re thinking big deal right? HECK YES, big deal for me. The thought of food and grocery stores have made me want to hurl for 6 months. I am excited about this return to food normalcy and being able to eat without constantly feeling nauseous. I am also able to pick my 7 year old at her after school program at the Y. The camp counselors are in shock at the sudden appearance of her Mom (me) as Chuck has been dealing with that end of things since April. I had texted my friend Jen one day last April that I would give ANYTHING to be well enough to take my youngest to the playground. I smiled (for you too Jen) while leisurely sitting and watching her play with her friends on the playground on Friday October 22, 2010.


I have returned to working out again daily at home with slipping in some Y time on the Elliptical here and there. Every day, with this autoimmune disorder, I have to pace myself and save on energy to be able to do all I want to get accomplished. I now explain my illness to people by using the spoon theory and it makes a lot of sense to them; http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/  . With little kids you could use candy or chocolate squares but spoons or any utensils work for adults. It’s normal for people to want to BOOST their immune system so it’s hard for me to explain why it’s dangerous for me to do anything that will boost my immune system. One of my online friends describes it the best in layman’s terms:


“Our immune system has 4 different cells that work together to give our body protection. These are called T-cells. These 4 cells have different jobs...1. Helper cells do just that "help" antibodies fight, 2. NK or Killer cells - go straight to whatever needs killed (bacteria) and kills it. 3. Memory cells- these build up our immunity, like with chicken pox and why normally you only get it once because you built up immunity. Then there are 4. Suppressor cells - these tell all the other cells when to stop attacking. We don’t have these cells....so our body doesn’t know when to stop attacking. It’s like an army going into fight and shoot until they see nothing moving and wait until the commander stays to stop...well the commander never shows up so they keep killing. Good or bad doesn’t matter, they just keep shooting. These NK or killer cells are just attacking everything because nothing has told them to quit. If you boost your immune system you are just going to add more people that are shooting to that army and more things that don’t need to be killed will be killed” ~ thehoff


Today, I prayed for Suppressor Cells in Church. I will pray for them again tomorrow. I will pray for them every single day. You pray for them for me too okay? Really. Just a simple “dear Heavenly Father, I pray that you help Julie by giving her Suppressor Cells and healing her. I ask this in the Lord Jesus Christ’s name, Amen”. I even gave you the prayer; all you have to do is say it.


Also, please say a prayer for my 51 year old Stepfather who is on a Neuro ICU unit in my city with a brain bleed. If you read my blog, you know he had a massive heart attack 11/20/09 at age 50 that left him brain injured . My R.N. Mother brings him home from his Nursing Home ‘rehab’ every weekend. He took a bad fall off the porch backwards last night and landed on his head. My Mom thought she lost him as he had a blank stare and started into an Agonal breathing pattern. He is not in a coma and so far there does not seem to be any hard core Neurological damage. God truly wants him alive. Considering he died twice and was brought back to life last Nov. by the EMT’s and now this makes me know beyond a doubt, miracles DO happen every day.


Thanks for reading,


<3 Julie

Sometimes Anesthesia is FUN!

I had a double procedure with biopsies done on Oct 6th that I had to have done in the hospital under total Anesthesia. Fun times people, fun times. Not because it was that big of a deal but because my Doc was concerned with being able to keep me “under” in the office/day surgery setting, with the anesthesia they are able to use. Apparently, I am used to high levels of pain but am also now used to very high doses of pain medication that would normally knock people out for a day or so. I can take a high dose and stand and talk to someone or read out of a medical journal. I don’t know why this amazes my Dr.’s but it does.

The lady admitting me said you’re way too pretty and way too young to be having a procedure like this done today. I told her she was way too kind and then said “OMG I’m 41, you must have people younger than me that get this done right?” She laughed and said that some are as young as 17 – whew. I had showered, put on make-up, beach curled my hair and smelled good. I even painted my nails and toe nails Hot Pink the night before. I figured if I had to have a procedure, I might as well look good right?

I leave pre-op finally and they are wheeling me down the hall and the nurses are gathered at the door to my room smiling? Geez people, I’m 41 what is all the fuss about? My Dr. is there waiting and looking like he walked off the cover of a GQ Mag as usual... So I know the routine. Lay on your left side and they come up behind you and put the sleepy stuff in your IV. I told my Doctor and Anesthesiologist I would take no responsibility for my actions or potty mouth when I came out of it. They asked what happened the last time I was "under" so I told them. When I went under I was immediately visited by Fairies – yes Fairies– who kept saying “don’t go back, come with us to the waterfall” and was in this dream-like setting with a lush waterfall and beautiful foliage. I was quite happy in that location and a little mad at first when I realized it was just a dream.

When I came out of that Anesthesia that time I looked at my husband, Nurse and Dr. and said verbatim (apology for language here) “OH my effn psychedelic trip!” Everyone blushed including me I think so I put my hand to my mouth and said “I am so effn sorry for my language y’all but those Fairies were weird”. Everyone got a kick out of that. I sounded like a drunken sailor but couldn’t help myself.

My Dr. told me that with this stuff he was having administered, the most common thing reported were people having erotic dreams. I am thinking OH NO, PLEASE LORD NO EROTIC DREAMS OR TALK. 

This time wasn’t as fun. I watched them put the stuff in my IV, I watched the bubble move through the tubing and it got to the IV port on my hand and I waved to my Dr. and said “night night”. I woke up smiling and said “are we gonna do this or what?” When I found out it was done I was thinking what? No Fairies, no waterfalls, no erotic dreams? Geez, no fair I feel so gyped LOL.


Thanks for reading,
Julie

I don't feel 41 and don't feek like I have Lupus ;)

My 18 year old and I decided this morning that our family is so zany that if we didn’t laugh we’d have to cry! You know it’s going to be a “one of those days” when you wake up to mass chaos. Raised voices yelling at 3 barking dogs to behave, my Mother telling my stepfather (who was left brain injured after a heart attack 10 months ago - also home this weekend from his rehab home) “put that pill in your mouth and DON’T try to give it to the dog”!, and my youngest standing over the guest bed saying “Happy 41st Birthday Mommy”. Blink. Blink. Awake now I am thinking thank you Lord for another glorious day and then oh gosh; please don’t give any narcotics to my dog Jack. He is already crazy enough and crap – I’m 41 today?? Oh man, I don’t feel 41.  I fly out of bed and run to the Dining Room for dog/pill investigation.

So let me back track… It’s my birthday weekend and we decided (as we often do on my husband’s ARMY Guard Weekends) to camp out at my Mom’s house in Western Carolina. It’s a closer drive to Charlotte for him and I am well enough to travel short distances overnight again (Yay). My oldest daughter came home from ECU too so we have a house full.  We have Moms two poodles and my Jack Russell Mix. Jack gets in trouble a lot by Grandma for sneaking up on her girl poodle on the side she is blind and he slaps her on the back with his paw. So then Mom gives me the ‘evil eye’. What can I say? He’s a true Alpha Male.

We watched the Penn State vs. ‘Bama game last night and my Stepfather kept yelling at the TV every time “Cornell” scored? I just let him believe ‘Bama was Cornell because it made him happy but tried to remind him he always liked the Blue Team more. We are all originally from NY and my sister works at Cornell so I guess that is where he got the idea? As I’m watching the game my Mom is giving him his pills and apparently I was too involved in the game and she turned her back so neither of us realized he either threw the pills across the room or spit them. My mom later stepped on one and figured it out. When he was on his way to bed we all said goodnight to him and Mom said to him “say goodnight to Julie” and he looked at her perplexed and said “Is Julie here?”… Ugh. At other times he will blow you away with being so correct with someone's name or an event in the past.  Neurology is so interesting and frustrating at the same time.

My Mom is a Saint.  She has been through a lot with her husbands heart attack and brain injury (at only age 50) 11/20/09, her Brother's cancer, and my Lupus.  My Step-grandparent's flew in from Ithaca, NY in December to try to help her out but while here in NC my Step-grandfather had a stroke in the back seat of my Mom's car.  It was on the way to see his son and we think the condition of my Stepfather was just too much for his Father to comprehend or handle... Since they were in a different county the Ambulance transported my Step-grandfather to a hospital 45 minutes from my Stepfather's Nursing/Rehab home.  It all worked out and he was able to fly home eventually but for a while, it was crazy for my mom. My Stepfather's Mother moved up to NC from Tampa, Florida with her family to help out thank God. 

Wow, I have actually (knock on wood) been getting steadily better. I haven’t felt too many affects from Lupus for the last couple of weeks other than fatigue and apparent blood pressure issues. My husband and friends are noticing signs of me needing to rest before I do so they help with slowing me down. I asked them how they know I need to rest and they all say I just change quickly. My expression changes and I start slowing down. Thankful for their interventions I am able to get more accomplished in the long run.

Apparently, word on the street is that I look a LOT healthier because I gained all of my weight that I had originally lost back (right around 20 lbs). The weight shifted to unexpected areas *grin/frown* *Husband does happy dance*.

Thanks for reading,

Julie

Happy Labor Day Weekend

"Mommy, will you always be sick?” “No, Mommy is broken right now but the Dr.’s are going to get me all fixed up”. I didn’t exactly lie; I am hoping this goes into remission so that I am fixed.

Moving my oldest daughter into her Dorm at East Carolina and then having my husband temporarily deploy to El Salvador 2 days later flung me into another flare  At the college I was in and out of the sun and didn’t listen to my family when they kept telling me to “rest Jul”, “stay in the shade Jul”, “Mom lay on the bed, I don’t want you to get sick again”… “I’ll be fine” I said. I was feeling pretty good and started to feel better as the days went on. I was back into designing jewelry and delving into the photography that I love so much. I went back to the gym, pushed myself on the Elliptical and didn’t slow down. Then 5 days later it hit...

I seemed okay until ½ way through my daughter’s first day of 2nd grade. Then the familiar crushing fatigue, sore throat, loss of appetite, and chills alternating with sweats started. I went from feeling just fine to REAL sick very quickly. I don’t know how I found the energy but I met my youngest daughter at the front door to act all excited about the first day. By the look on her little face she knew I was ill again. No matter how hard I try to hide it, I can’t fool her. I hate that terrified look  Darn Army… why El Salvador and why NOW? No one is here to help us and I desperately needed a strong shoulder to cry on. My daughter needs to feel secure and she can’t when I am home alone and ill. Talk about insecurity and panic mode…

I just gave in this time, I know now that when my body says rest I do it. If that means for 11 hours or 11 days it doesn’t matter. Boxing gloves off, my friend Tamura took over with my youngest and I called my mom in for the weekend to help until my husband got home. When my husband arrived, he told me under no circumstances was I to do anything but shower and rest – period, until I pulled out of this flare. He is so supportive and calm. In true military mode, he just takes over – adapt and overcome.

During the last week (spent mostly resting) I reluctantly canceled my upcoming paid for Bahamas Cruise. My Dr. and husband did not want me to be out of the continental US during this unstable stage and have to be medevaced to Florida should anything happen on the ship. Although I agreed with them, I cried so hard I had the booking agent crying for Pete’s sake (sorry Lorraine and Susan). I was supposed to be my 41st Birthday bash and my friends Jason and Jen are booked on the same cruise. Darn Lupus *cry*.

When God? WHEN will this get better? I am not missing college football games and Hockey games even if I have to lie on the floor of the arenas to attend. I know it takes 6 months for the Plaquenil to really do its job so I am patiently waiting and praying. Until then, life must go on and the only way I know how to live is to the fullest.

Realizing as transplants here in NC, we need reinforcement in time of need. We interviewed a Nanny. My only requirement, other than she actually like kids (hey, you never know) is that she speak English as a second language so that she can teach our youngest Spanish. A sweet lady that speaks very broken English, but background checked and valid Driver’s License. Veronica will be helpful for me.

Today was great. I felt like the old me. I felt no signs at all of the dreaded “L”. I helped put up a tent for my husband and daughter – he promised her a camp out so it’s in the backyard ;) We put up a tree swing on our property for our youngest and had a very enjoyable day spent outside, finished off with a BBQ. Company in from Corning, NY (my home town ). I hope I don’t have to pay tomorrow for having a good day today.

Thanks for following,
Julie

If Lupus wanted a fight, it found its girl!

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