July 8, 2014

Down The Lupus Rabbit Hole!

Photo Credit: Michelle Claessens
It's been a long time since I picked up my writing pen, but here I am back at it again. So much has transpired since we last spoke...I almost don't even know where to begin. It's as if I have been swirling down a rabbit-hole of health care and boy has it been a scary road to walk....or tumble in.

In 2012 I struggled through four months of being in and out of the hospital during Hurricane Sandy were brutal. I am thankful that the power of social media helped me receive safe passage to my family hospital. I remember being in a E.R. where all of the nurses on the floor had no clue what lupus was! What kept me safe was having a health care proxy that was well informed about what to do should I be unable to make health care decisions on my own. No treatment was done until it got past mama bear!

Lupus can be a cruel mistress. An un-spotted UTI gone sepsis in my blood stream led to failing organs and mental health issues. MRIs, brain scans, spinal taps, blood transfusions were some of the many procedures prescribed for me. I almost didn't make it out the health care system alive. I remember asking for DNRs (Do Not Resuscitate) forms in case my quality of life became a vegetative state. I remember having to re-learn how to become accustomed to daily living and caring for myself.

My awesome family being supportive during my 2012 hospital stay.
Everyday I strove to do better, and wondered how the outside world was doing. My family was very closed via social media on my condition. I now have instructions on who is to be informed about my health while I am away and unable to be online. So many of you were worried sick and (heaven forbid) if there is a next time I fall ill, my family will know how to communicate better so that my online lupus/health family are in the know.


It's been almost 2 whole years since my major hospitalization and I'm only just recently during these past few months feeling back to my normal glitterati self. There were days when I looked in the mirror and didn't recognize myself. Steroids had ravaged my body. Psych medicine had tormented my mind. There needs to be more discussion on lupus life for those of us who are living with it. Which medications affect how dangerous sun rays damage our skin? When is it time to seek a therapist? What foods can help ease inflammation? What are the top 10 questions to ask your rheumatologist? There is so much we NEED to know and not enough current information on how we can have a better quality of life.

So I ask you this now, what burning questions do YOU have about life with lupus? What do YOU wish there was more of for us patients? Let me know!

8 comments:

  1. Really? Mental issues too? I am so sorry. Now you raise another question for me. I have Lupus and just recently my son developed mental issues so bad he was in ICU. Can this be related? Maybe I should have him tested for Lupus. Oh Lord Tiffany, what would I do without your information.

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    1. Yes, 2012 was a rough year for me. I had been battling depression since diagnosis in 2010, but during my hospitalization the sepsis had spread and was affecting my mind. There were times when I couldn't even remember my own mother! What kind of mental issues is he showing? Make sure to look for the common lupus symptoms in him, keep track of your findings in a journal noting the time/date so you have something to look back on when you consult a doctor. Sending healing love your way!

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  2. He was hearing and seeing things. He was really really depressed. He sleeps a lot. Before he was an honors student and has worked since he was 15 years old. He is now 22 years old and when he was real sick he could not do simple math. He has been in treatment since March and they still have not labeled what it is. He graduated from college in December and that is when it all started. Every day he gets better and they are always trying new meds on him. After reading your story yesterday and another one on Lupus and the Brain, I decided to call the doctor I see for my Lupus and make an appt. I am seeing him today to talk to him about this and to get my son tested just for peace of mind. Thank you for all you do, I have been worried about you since I had not heard from you in awhile. Glad you are doing better.

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    1. Kudos to you for keeping on top of his health, it's not easy especially while also living with an illness yourself! I'm glad he's getting better. Please keep me posted Bernadette. Hugs, I'm doing much better these days!

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  3. I was diagnosed in 2008 with lupus i was doing really good till nov of 2013. I went downhill i am a prek teacher and had to quit my job every sickness the kids got i got and my health is no longer the same and just got diagnosed tuesday with pulmonary fibrosis i have mild scarring in lungs. This really scares me because not just going to the restroom leaves me short of breath and with chest pain.
    39 year old wife, mother of 4 and grandmother of 3.

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    1. Sending healing love your way Jennifer! Perhaps searching for other lupus patients online also dealing with pulmonary fibrosis can be of some comfort. If I hear anything I will send the info your way! Keep your head up lovie!

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  4. I am a 34yr old single mom and I was just diagnosed with Neurological Lupus. I spent 2 weeks in the hospital after thinking I needed back surgery. After many many many test it wasn't my back. I am thankful that I now have answers to all of my issues but very scared about my healing time. I have lost feeling in my feet and left hand which have left me unable to work. I have give it all to God because he knows what he is doing.
    Thank you for blogging your journey it really helps with reading other stories.

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    1. Thank you for sharing your story Kimberly! Keep an eye out because I will be posting more updates soon. Stay strong xo!

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