Diagnosis Number Three: Lupus. | My Meena Life.

Diagnosis Number Three: Lupus.

Three chronic illnesses?  Lupus?

This is starting to get out of hand.

In November of 2015 I began suffering from debilitating pain while living in Germany.  This pain, along with other symptoms, has made it very difficult for me to function normally. Going to the doctor in Germany (several doctors, actually) turned out to be less than helpful, and so I’ve looked forward to the start of this year when I’d be back in the United States and my health insurance deductible would reset.

So far, in the first six weeks of 2017, I’ve been to see a doctor seven times (nine if you count my therapist) and it doesn’t look like I’ll be slowing down anytime soon.  It’s been a frustrating journey that has led to my third diagnosis in two years – lupus.  This is not like my first two illnesses (osteoarthritis and fibromyalgia).  This one is a different beast.

 

Diagnosis Number Three: Lupus. | My Meena Life. Background image by Mypik.

 

Lupus is an autoimmune disease where the body’s overactive immune system attacks healthy tissues.  My body is currently at war with, well, itself.  You could say that my immune system has gone off the deep end.

While I wasn’t expecting to receive a new diagnosis during my search for answers, I did at least have some warning.  My rheumatologist pointed out the butterfly rash on my face as indicative of lupus at my first appointment.  This facial rash looks like the wings of a butterfly unfolding across one’s cheeks and it’s the most distinctive sign of lupus.  I had previously thought that my frequent rash was a result of being overheated.

After my appointment I started reading about the disease and I was absolutely convinced I’d be diagnosed with it at my follow up.  That foreknowledge didn’t make things any easier, however, as I sat in that small room listening to my doctor talk about the inflammation markers in my blood work.  While my blood confirmed an undifferentiated connective tissue disease, my symptoms narrowed it down to lupus.  Before I left, my doctor asked if he could show the medical student my classic butterfly rash – it was a good learning opportunity.  I was happy to help but I also felt a deep sadness as he pointed out the contours of bright redness on my face.

This was my face.  My diagnosis.  My future.

 

My butterfly rash. | Diagnosis Number Three: Lupus.

 

 

What does it mean to have lupus?

 

I’m still figuring that part out myself.  Here’s some of what I know so far.

A normal, healthy body produces proteins (called antibodies) that attack viruses, bacteria, and/or germs that enter the body.  My lupus riddled body makes these proteins constantly and they get confused and attack my healthy parts.  This is what causes my inflammation, pain, swelling, and general unhappiness.

This diagnosis doesn’t change actually change my life that much.  I’m fairly certain that I’ve already been suffering from lupus for at least a year.  But I will finally be treated correctly for my illness and be armed with knowledge that will hopefully improve my life and make it easier for me to function.  That being said, educating myself about lupus has been rather stressful.  Here are some facts about the disease:

1| It’s chronic and can’t be cured.

2| It’s a flare and remission disease.  In other words, my symptoms will fluctuate – sometimes getting worse and sometimes getting better.

3| Having lupus makes me more vulnerable to infections because my immune system is confused and weakened.  (I’ve had two infections in the last two months, actually.)

4| Pregnancy is riskier for me.  I have a higher chance of suffering from miscarriage or preeclampsia, and there is also some small risk for the baby.

5| I need to limit my time in the sun, as exposure is known to trigger flares (goodbye tan lines).

6| Lupus can damage any part of my body (skin, joints, tissues, organs).  So, over time, my health care team may expand to include immunologists (immune system), nephrologists (kidneys), hematologists (blood), dermatologists (skin), neurologists (brain), cardiologists (heart), and/or endocrinologists (hormones).  This is in addition to my current team that includes my primary physician, rheumatologist, and therapist.  I’ll be going to the doctor a lot.

And the fact that bothers me the most:

7| “Lupus can range from mild to life-threatening… With good medical care, most people with lupus can lead a full life.”
Source.

This is the way that lupus is different from my other health conditions.  It could actually kill me.  I’ve read that full blown lupus can kill people within five years if it’s not treated.  Also, since I’m pretty sure that I’ve had lupus for one year already, you can imagine how that statistic makes me feel.

 

Diagnosis Number Three: Lupus. | My Meena Life. Image background by Mypik.

 

How could lupus kill me?  It could make my body attack my organs, bones, or blood vessels to the point where they malfunction or fail.

Oh, and the medication I’ll take to prevent lupus from killing me?  It could kill me, too.  It will suppress my energizer bunny immune system and make me more susceptible to catching a virus or infection.  I will soon be part of that population that really, really needs you to get vaccinated and stay home when you are sick.  There’s also a chance the medicine could damage my eyes, so I’ll be seeing my eye doctor three times a year from now on.

Am I being dramatic?  Maybe.  But this is my body, my lupus, and I’ll be as dramatic as I want to.  Once you’ve racked up three chronic illnesses – including a potentially lethal one – you’ll find that you have a lot less patience for what other people think.

This is a scary diagnosis for me, and it’s going to take time for me to come to terms with it – especially since I’m still coming to terms with the last two.  I’m still only 26 years old and I didn’t expect to have my body go haywire so early in life.  I also didn’t expect to have a treatment plan that primarily consists of reducing organ damage.  I’m concerned that my need to be closely monitored – and see so many different health professionals – will make it difficult to move to a new city or country (I’d love to be an expat again).  And I’m exhausted.  My body can’t handle more than an hour or so of physical activity before it shuts down and I can’t get out of bed.

But I have a lot of hope.  I hope that the local support group I’ve found is a good one.  I hope that I don’t suffer terrible side effects from my medications.  I hope that I continue to see excellent doctors, have good health insurance, and receive support from my friends and family.  I hope that my body will calm down for goodness’ sake and allow me to wear my wedding ring again.

But my biggest hope is that this diagnosis is not followed by a fourth one.


If you want to know more about lupus, I recommend reading How to Explain Lupus to People with Functioning Immune Systems by Lisa from Damsel in a Dress.  Her post is accurate, informative, and hilarious.

On being diagnosed with #lupus. Click To Tweet

Pin:

Diagnosis Number Three: Lupus. | My Meena Life.

 

Backgrounds for graphic images by Mypik.

Related Posts Plugin for WordPress, Blogger...

32 thoughts on “Diagnosis Number Three: Lupus.

  1. I'm so, so sorry to hear this! It sounds so scary, and it's frustrating to feel like your body is struggling at such a young age. But I have hope for you, too. I hope especially that your treatment proceeds smoothly and that you find support in your support group. Most of all, I'm sending you all my best wishes for lots of "good pain days" (as I've started to refer to the days when my pain recedes).

    1. Thank you Danielle! It is scary, and I’m thankful to have support from so many people – including you – while I’m learning how to handle this. 🙂

  2. Ava, Really feel for you on your new diagnosis, truly do! Last Spring was diagnosed with osteo arthtriits to add to my already long list of diagnosis with Fibromyalgia, CFS, Celiac, Raynaud's Phenomenon, Migraines, & Costochondritis. When told had OA was really upset especially as am a creative soul although that has not stopped me albeit slowed me down somewhat! So, yes, it is mega tough to hear of yet another auto immune condition! Please lean on us all in Chronic Pain Support Group over on MDjunction.com okay. Am one of the group leaders there alongside ScorpioJ. Am British and my co GL is from Canada. Hold on tightly and be like the Finnish- be a Sisu warrior. Sisu is their fabulous word which means resilient yet it signifies so much more than that- when first came across that word thought that is what want to. Be a Sisu Chronic Pain Warrior. NO matter what curveball comes my way will be like a phoenix- keep rising up from the ashes/bouncing back! May cry for a little while yet soon dry eyes then dust self off again :-)! Here for You, okay! Warmest wishes, Clara

    1. Thank you so much Clara. I’m sorry to hear of your many conditions and I appreciate your empathy about mine! Thanks for the info about the Sisu warriors. I will check in to see the support group from MDjunction. You’re very kind!

  3. Thank you for being so open with all of this and sharing what is certainly something so overwhelming in your life right now. God is a a God of hope and I certainly heard hope in your words as you ended your blog post. I am so glad that you do have hope. Without that you would be an even bigger mess. Use this time to draw closer to the Lord and ask Him what it is he wants you to learn from this. I pray that this is a season in your life and that you gain strength from the hope you claim. We love you and will pray for you!
    Aunt Pam

  4. Thank you so much for participating in our first link up party at The Unbroken Smile. I'm sorry to hear this, but your article is great and I'm sure our readers will think so too. Thanks for sharing! ((Gentle Hugs)) – Elizabeth

  5. I'm so sorry to read about your new diagnosis. Of course it's scary and frustrating to be facing something new. I hope that you continue to get good care there and find the support groups helpful. Sorry to hear the doctors you went to in Germany weren't helpful. I've found the doctors quite mixed here. It can be hard to find a really good one. Wishing you all the best going forward!

    1. I was really limited with my options for doctors in the small town I lived in, I’m sure that if I had lived in Germany longer I would have gone to the nearest big City (Wuerzburg) and found better doctors. Thank you so much!

  6. I always find it so hard when I get a new diagnosis. It's a total shift. LIke, I'm used to dealing with this….now you gotta toss in something else, too?? Sorry you're dealing with this. <4

  7. Hi Ava,

    I know exactly 100% how you feel. It messes you up mentally when you think, 'how much worse can it get? It should stop after this.'. Only to realise worst things can happen. I was diagnosed with Lupus 14 years ago, and then every year they added a new diagnosis to the pile. Somehow they are all linked. In any case, I sincerely wish you well on your journey back to decent health. We are all in this together, and I know you can make it out victorious. Your writing thus far has reflected this. Take care!

  8. So sorry you have to go through this! have been diagnosed with Hashimotos recently after having beat interstitial cystitis already and I was just ready to give up. It's not as bad as Lupus obviously, so I can't imagine how horrible it must be for you. Wishing you all the strength!

  9. This diagnosis sounds like a lot to process and would be scary to anyone. It sounds like you have done a great job getting the information you need and have a good medical team in place to start treating you correctly. I hope getting the appropriate treatment will help you feel better than the untreated past year and by being so proactive I'm sure you'll be able to mitigate any negative side effects. Best wishes for the year ahead!

  10. I was diagnosed with lupus six years ago. I honestly feel your pain. It took my rheumatologist and dermatologist four years to come up with a treatment plan that worked for me. It was a frustrating four years, but know that every lupus patient is different. Be honest with your rheumatologist if you aren't feeling better. The downside is a lot of the drugs take 3-6 months to work. I promise it will get better!!

    1. Thank you, Kristen. I definitely need to remember to communicate openly with my doctor. I am so ready to start treatment and begin feeling better!

  11. Ugh. Lupus was my first diagnosis, then came anti phospholipid antibody syndrome, and this year I got my third diagnosis, pulmonary hypertension. Thanks for writing this post and being strong. I'm also a travel blogger, and it's encouraging to see someone else who had to carry their illnesses with them when they travel

    1. Thank you. I know these health problems can make it harder to travel, but I’m glad we can relate to each other and keep traveling through the difficulties.

  12. I'm so sorry to hear about this, Ava. I admire your courage, your perseverance, and your candor – I can imagine this isn't an easy thing to go through, much less blog about. I hope that whatever treatment plan you chose, everything works out in the end! Best wishes and do take care of yourself!

    1. Thank you, Danny, It does help to write about it – turns out the chronic illness blogging community is quite large and supportive. I’m certainly ready to start treatment, feel better, and start traveling again (within my abilities). I’ll never be normal but I can be better than I am now.

  13. So sorry to hear this news! I know how difficult this disease can be. My "second mom" has also had this disease along with multiple other diseases at the same time. When she was diagnosed with it, they said she'd has less than 5 years to live, yet almost 20 years later, she's still going! And she certainly makes the most out of every good day she has! Having such a disease doesn't change who you are on the inside, and makes you that much stronger! Best wishes!

  14. Hi Ava, thank you for posting a comment on my website (the waterfall lunch post). I checked out your site too and just read this post. I feel that I'm not in a position to proffer advice but HUGS… hope you accept my hugs from Malaysia 🙂 Take care, be strong…and smile 🙂 Cheers!

Comment here!