Tuesday, April 22, 2014

The L Word

Hi friends.  I have some personal news to share today.  

I want to share what's been going on in the past several months because, well, that's what I do on my blog.  I share the good, the bad, and the ugly with the world.  It's really the point of a lifestyle blog, right?  To share our lives and bond with complete strangers over it....

I don't share the yucky stuff to gain sympathy or to get attention.  I'm just keeping it real.  Sometimes it's therapeutic to write down my troubles and say what I'm exactly feeling. 

So, here goes.  

I was recently diagnosed with Lupus.  The new "L" word in my vocabulary. 

Lupus is an autoimmune disease that attacks mainly women, usually in their child-bearing years.  It's basically like a Civil War going on inside my body.  My body is producing antibodies against itself.  Those antibodies are attacking healthy tissue which causes inflammation.  Eventually, Lupus can attack the heart, kidneys, and lungs if not controlled.  There is no cure for the disease, though there are several new treatments that are effective for controlling the symptoms and protecting the organs from damage.

I've had weird symptoms on and off for years, and since December, things have escalated.  I've been in a lupus flare for several months.  

I was scared.  I knew something was wrong with me.  Part of me didn't want to know what it was and part of me just wanted answers.  What if it was cancer?  What if it was nothing and I was crazy?  What if it was Lupus?  I had done my research and new my symptoms fit the disease profile.

One of the positive things that has come out of all of this is that I learned how important it is to listen to my body.  My body was waving its white flag and I didn't ignore it.  Thank goodness.

I went to the doctor and told her all of my strange symptoms.  I gained so much respect for her as a physician.  She listened to me, took me seriously, and promised that we would get to the bottom of this.  Mr. BMJ was worried too.  He saw me, night after night, suffering from fever and pain and encouraged me to get checked out.

The worrisome symptoms are daily fevers and night sweats.  The other annoying symptoms are muscle and joint pain and stiffness, flu-like symptoms, rash, mouth sores, sun sensitivity, hair loss, flu-like symptoms, frequent kidney infections, extreme fatigue, headaches, memory loss, and other cognitive issues.  

My blood tests showed signs for Lupus and my primary care physician sent me to a Rheumatologist.  He made the diagnosis and established a treatment plan.  The good news is that all of my organs look good and no damage has occurred.  We just have to protect them and get the symptoms under control.    

Maybe I will feel good one day?  I forgot what that feels like.  There are days that I would look around and think "Is this what life is about?  Feeling awful everyday?  I'm 37 going on 97.  What will I feel like then?  Am I just a wimp?  Surely not everyone feels like this."  

So, here's the plan....  I start an oral medication today that will hopefully make me feel a little better.  It's a medication that is used to treat Lupus, arthritis, and malaria.  Interesting, I know.  I will be starting an infusion medication (a drug that is slowly administered through an IV in my arm) next week and will be spending many hours in the near future at the doctor's office trying to make myself feel better.  Hopefully, it will all be worth it.  I've lost my mind with worry and stress about the possible side effects of these medications.  

Being newly diagnosed with a disease really makes you think about your priorities in life.  

I don't want Baby Girl to grow up with a "sick mom" who never feels like doing anything.  She is very perceptive and knows there is something wrong.  She's been overly sensitive and complains of some of the things I complain about.  She has "sympathy Lupus" at age 3.  That breaks my heart.  I want to be around to see her as an adult.  I want to be a happy, healthy grandmother who is fun and can take care of my grandchildren when she needs me to.  

I feel like a shell of the person I once was.  I truly struggle some days to get out of bed because I feel like crap.  I don't feel like being social anymore because I'm sick and sad and tired.  I want to get my old self back.  I don't want this disease to define me as a person.  I feel bad for my family and friends.  I'm always sick.  What a drag that must be to hang around.  I've become the one thing I was afraid of becoming.  Funny how life turns out sometimes, huh?

I considered quitting the blog.  With everything going on in my life right now, do I really need an added stress?  Stress exacerbates Lupus flares.  But, my blog has been nothing but positive in my life.  It provides an outlet for me to express myself and connect with other people.  I've formed some pretty amazing friendships through this webspace.  So, for now, I'm going to keep on writing.  You'll know if you don't hear from me that it's not because I don't want to be here, it's because I can't. 

Thanks for listening friends.  We'll talk soon!


20 comments:

  1. Glad you are being positive and I know having a diagnosis is a relief. Thinking of you and your doctor's as you get your regimen underway. I hope you keep blogging. You definitely brighten my day! Let me know if you need anything. xx

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  2. Amy I'm so sorry to hear about this but you have the best attitude about it! Have faith because I know many women living with this and other autoimmune diseases and it is under control. One way to control the symptoms is with a really healthy, anti-inflammatory diet. Sending love to you! xox

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  3. I am so sorry to hear about your diagnosis. but dont lose hope -- hopefully the medication will work and you will feel more like yourself soon. i was diagnosed with crohn's disease last year (i actually just finished a post about it for tomorrow) and it was a really rough year. i lost all of my energy and felt terrible. i am reacting well to the meds now. health issues really do put things in perspective though -- you realize who is really there for you and what is really important. take care of yourself and try to put yourself first so you can feel better. xo jillian - cornflake dreams

    ps i agree with marissaRose about food impacting your health -- it made a difference for my crohn's BUT there are some things you just cant control. no matter what i ate last year i got sick -- so i went on medication and THAT (with all of it's possible side effects) made a difference. its a decision that you and your family should make though. best of luck xo

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  4. Sending big hugs and lots of love and support from Nebraska. So happy and proud of you for sharing something so incredibly personal. Hoping the medication works and gets you feeling better soon! xoxo

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  5. Thinking of you constantly Amy! I'm just around the corner in mt p if you need anything or even a laugh or too. You are an amazing person and I admire you for sharing your story with such honest strength. Of all the blogs out there, yours is my favorite because of how real you are. And you're just as fun in real life. Xoxo

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  6. Wow, Amy. I'm so glad you have shared what's going on, that you have new medication to help, and that you feel your blog is positive and want to continue with it as you can. You and your family are in my thoughts and prayers. You're one tough cookie and mama and I know you can get your 'old' self back. Thank goodness is right that you listened to your body. Time and hope help a lot. And you know you've got one hell of a "virtual" support system rooting for you I think :) XOXO

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  7. Sounds like you have the right attitude! And it must be somewhat of a relief to know what is wrong. I had a friend that was diagnosed with lupus when we were in high school! It was a little rocky at first but now, 30-some years later she is doing great! You are in my thoughts and prayers! :)

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  8. I cannot imagine all that you have been going through, especially in the last couple of weeks. You are an amazing person and I'm so glad I've gotten to know you in real life. My hair, skin and wardrobe wouldn't be the same without you! Hopefully you'll start to feel more like yourself soon. It's got to be horrible to feel sick all the time. You know I'm here for you, start picking out your movies for some marathon watching sessions.

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  9. You are truly amazing. An inspiration to many for being open, honest and a true lady. My Granny always said, "stand up. Chin up. Face forward." This was her way of saying keep going and do not stop. Always know you are loved and have tremendous support both in "real life" and virtual-life. Your blog is one of my favorites as well bc you are honest and funny. Your blog shows personality. I hope you never, ever give it it up! Lunch date soon my friend! Prayers for you to feel like Amy again soon! Hugs!!

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  10. I just started a comment and it disappeared, so feel free to delete if it's a duplicate from me! I've been thinking about you not feeling well and really hoped it was nothing serious. The good news is it's treatable. I hope the meds & infusion get you feeling better and back to your old self. I love reading your blog -- you never steer us wrong ;-) Will be praying for you and if there is ANYTHING I can do...please let me know. Sending you big hugs friend!!!!

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  11. I've been thinking of you a lot lately, and am sending you good vibes so you'll feel better. I know you'll take great care of yourself and am confident you'll stay strong. I wish I could be closer and help you more, but please know I'm always here to listen! Be strong!

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  12. You are so strong to share what's going on. My aunt has lupus and I haven't seen her ever struggle or change her lifestyle at all. You would never even know she has it. Although I know it's very upsetting now having a diagnosis at least now you know. I'm sure that's some what of a relief. I was born with a chronic kidney disease and knock on wood haven't had any issues yet but i always get so worried how my levels are going to be whenever I get lab work done. You always keep it in the back of your mind but you can't worry and let it ruin your life. That's one thing I've struggled with. Good luck with everything and don't quit the blog we all love your funny sense of humor! Blogging is the best stress reliever and escape from normal life. I'll be thinking about you!!

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  13. I'm so sorry to hear this!! I will pray for you and please don't quit blogging if it makes you happy. We would all miss you.

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  14. So sorry to hear you are going through this. Sending good thoughts your way! Hope the medicines will give you some relief!

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  15. Oh Amy...I am so so very sorry to hear about this. You are a strong woman and you can fight it. At least you know now what it is and know what you can do to make yourself better and take steps to keep your condition from worsening. There is a blog I know of where the writer (a mommy) has Lupus...you may want to check it out. www.mamasick.com. I hope your treatments get you back to feeling like yourself...and again, I am just so sorry to hear about this. Prayers and thoughts are with you. xo

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  16. Oh Amy I am so sorry. I have been going through the same and I had a positive ANA test back in the fall. My lupus test came back negative but after another trip to the ICU for a kidney infection they sent me to a rheumatologist to double check. Espeically since I have been experiencing hair loss and joint pain. Those tests are also negative so we are looking into other things. You are strong and there are medical advances to help you! Sending you prayers from Charlotte, NC.

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  17. Oh Amy! I am filled with such a mix of emotions for you. On one hand I am happy that you have an answer but on the other hand I am not happy with you "answer". I am in awe of how positive you are and I know that you will be feeling better soon. Let us know how your treatments go next week. I will be praying for you!!!

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  18. Hang in there girl! I'm glad that you found that you could come here and share this news with all of us. I know a diagnosis like this is not something anyone wants but at least you have a diagnosis and a treatment plan in place. I hope you start to feel better soon. Sending lots of virtual hugs your way!

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  19. Hi Amy - I'm just checking up on blogs after a busy week and my heart breaks to read this post. I'm so sorry that you've been living in chronic pain, but I hope you are finding comfort in a diagnosis and treatment plan so that you can get back to being your lively, fun self.

    Keep us posted and I'm sending lotsssss of positive energy to you and your family as you navigate this new path. xoxo

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  20. Oh girl. I know this will change your life, but I am so very glad you have an answer. Not knowing is the worse part. I remember when my mom was really sick and then got diagnosis with type 1 diabetes as well as celiac's disease. It was a life changer for sure, but once she knew she had a plan and moved forward. It eventually comes part of your habit even though there are days of reminders. Hope you are feeling better and so glad you have answers. xoxo

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