Hope N the Word

I was looking at pinterest yesterday and came across a quote on another Lupus board.  Sorry, I haven't learned how to copy from Pinterest to my blog yet; so I will just type it.

"Girls my age are all:  I wish I were skinnier.  I wish I was tan. I want my hair longer. I hate my teeth.  I want a newer car." ...and I'm over here like "I wish I could walk down those stairs without wanting to scream!"

That quote made me burst out into tears!  There are so many things in my life that I took for granted - my dear Mother-in-Law calls it "wishing your life away."  I would always roll my eyes whenever she said that.  Now, I know EXACTLY what she was talking about.  It is a very hard lesson to learn and sometimes wonder to myself "do I really deserve to learn that lesson in such a drastic manner?"  The answer is, No, I don't "deserve" it, it is just the hand that I was dealt.  

Don't get me wrong - I still want to be skinnier, tanner, prettier, had whiter teeth or a better car - those are things that I can improve on myself.  What I WISH is:  I could play with my grandkids without spending the next day flat on my back, hold my grandkids without hurting, take my dog for a walk without falling down, plant flowers in my garden without getting stuck on the ground, watch a movie without falling asleep, go to sleep without waking in horrible pain from muscle cramps and I miss getting on my knees to pray!

Until a cure is found for this horrible disease, I CHOOSE to live each day as it comes to me.  I will enjoy the good days and do my best to endure the bad.  I will love on my grandkids the best that I can and I will play with  them in the manner that best suits my physical ability that day.  I will love my dogs and take them for rides in the car.  I will pick out my flowers and let my husband plant them for me and then I can water and tend to them.  I will enjoy the naps I take while everyone else enjoys the movie.  I will enjoy the fact that I can pray, no matter what position my body is in.  (I will do my best to get thru the frustration of missing Dr. Phil everyday, because my internal clock has decided that is naptime).

I will choose to laugh!

Here is another quote that I found on Pinterest and it made me burst out laughing:

"Sometimes, I feel more confused than a mood ring on a paranoid, bi-polar, schizophrenic, chameleon in a bag of skittles."

I get so tired of explaining symptoms.  It becomes embarrassing - like I am looking for a "reason" to announce that I have this horrible disease.  Don't get me wrong - I am all about educating the public about this disease, but sometimes it's very tiring to explain it to each individual person.

I start to fall down and try to play it off like I am just clumsy - then it becomes the big joke, so I feel the need to say "it's just something that happens with me. It's a symptom." Then I am stuck saying, I have Lupus and Fibro.  It's like those diseases define me, but they don't!  I am so much more than a disease.  I am a good friend, funny, sympathetic, empathetic, loving and spiritual.  

I have these diseases, I am NOT these diseases.  I hate them!  I hate that on a good day, I still have to take it easy so that I don't bring on a bad day.  I hate that when I am having fun, I worry about how it is going to affect me tomorrow.  I hate that I can't plan ahead.  

I just have to keep the faith - I believe that God has a plan for me.  Maybe all these mini-speeches are preparing me to speak in a larger public forum to educate others and campaign for a cure.

My story - where to begin?  You don't really want to read the whole Lifetime Movie Network version (besides, if I wrote it here they might not accept the screenplay). Really, you just want to know about my illness.

I will leave out the plethora of illnesses, accidents, and surgeries and skip to when I first realized that something was really wrong with me. Oh, but first (I lied) you will need to know that I have been on medication for Hypothyroidism since I was 12 years old, I have had arthritis in my right ankle for about 10 years and have had minor edema in my right leg for about 8 years.  Ok, now I can go on to Lupus and Fibromyalgia...I am sure I have had plenty of symptoms for years, but they all seemed to plague me at once in 2009/2010.

In April 2009, I began noticing that I just could not stay awake and that both my legs were swelling to the point of looking like tree trunks.  Then I would have days that just touching my legs felt like someone was reaching into my skin with flaming fingers and just ripping my skin off of the bone.  I was also noticing a cyst in my wrist and that sometimes my speech was slurred.  I went to the doctor and was told, "Do you realize that you are obese?" I said that I knew I was overweight and he said, "You are EXTREMELY obese.  Do you realize how obese you are?"  He told me to lose weight and I would be fine.  I left that appointment so upset.  OF COURSE I knew that I was obese, but WHAT did that have to do with my wrist and slurred speech!?!?  This happened with 2 more appointments and since I don't have insurance and I am at the mercy of the Indian Clinics, I chose to drive to another clinic in another town.

By that time I was having CONSTANT pain in my legs and constant edema, I had a very horrifying episode with split vision, and the fatigue consumed my life. I went to the Indian emergency room and found out that my thyroid levels were 157!  (Normal is 1-3.) I thought "whew" I will just change my Synthroid dose and I am home free!  Wrong.

I was back and forth to the out of town clinic every other week.  In January 2010, I got an abscessed tooth and had to take 2 rounds (20 days) of antibiotics before the dentist could pull it.  Once pulled, I got another infection and had to take 2 more rounds of antibiotics.  Meanwhile, the pain in my legs continued to get worse and worse and I was sleeping up to 20 hours a day.

Now I started physical therapy and taking carbomazapine, that stuff made me sick to my stomach.  So my nurse practitioner switched me to Neurontin, which made me like a drunk (but hey!  No pain) - I hated it.  During this time, I was also having labs drawn every 2-3 weeks to monitor my thyroid and to look for any other possible explanation for my symptoms.  During one of these labs, my liver enzymes came back way too high.  My doctor ordered a repeat of the test and an ultrasound of my liver.  I met with my doctor and my nurse practitioner to get those results and was asked, "How much do you drink?" They would not believe me when I said that I don't drink alcohol. They kept insisting that I be honest with them about my use of alcohol.  I said, "I drink a glass of champagne on New Year's Eve and I might get tipsy once a year, if at all."  Convinced that I was being honest, my doctor told me I had cirrhosis and that my liver function was at 87%... Fabulous!  What else?  I can never regain full liver function, but I can stop it from getting any worse.  And I am happy to say that I have maintained that level for 4 years!

At that point my doctor and my nurse practitioner decided to do the ANA test for Lupus and told me, "This test isn't 100% reliable and even if it comes back negative - I am telling you that you have Lupus."  I have had 2 positive ANA's and one negative over the last 4 years.

Oh yeah - and about that obesity?  I joined Weight Watcher's in 2013 and have lost 31.6 pounds as of March 2014.  I am on my way to a healthier weight.

And the doctor who said everything was due to my weight?  He was fired.