I am back kids…hope you missed me while my body and brain were on extended sabbatical attempting to get better. Last time I had the notion to write about the life and times of my family’s adventures I mentioned I was diagnosed with pericarditis and pericardial effusions ..leaving me all but bed ridden. To be honest….not much has changed except the plot thickens.
My last post was around the time I was feeling that it was time to take a break from the constant doctor’s appointments, wallowing in what was wrong and time to start focussing on the good stuff. The good stuff being my family, the fact that I did not have a fatal disease and I truly believed I did not need to pay the doctor to tell me to continue taking NSAID medication and to rest. So I cancelled my appointments, started focussing on my then high school senior’s college adventure and rested while taking loads and loads of Motrin. Can I just say that was not my most brilliant plan ever conceived?
Well Fast Forward to Summer of 2015..my high school senior has done all the senior year things…SATs, flipped out every time the mailman drove up the street, checked in online on the college admission sites..did her senior capstone projects, Her Irish dance team came in fourth place in the world at the world championships (yeah I went to this one..nothing was keeping me from being there with her)… checked out/developed senioritis right after winter break..prom…graduation .. Her Irish dance team WON that’s right first place at the North American Nationals..she became a massive pain in the ass right on schedule. Life was moving along well enough..I could manage.
I am, still not better and at this point it is 18 months since my diagnosis and of all people, the OB/GYN is the one who forces me to go into one of the teaching hospitals in the city to see just what the heck is going on. While this is happening..I am starting to develop an ulcer from the high doses of NSAID medication I am eating like candy to ease some of the symptoms. Time to go back to the doctor..
Thanks to my amazing OB/GYN I get an appointment with one of the top cardiologists at one of the world’s leading hospitals and thankfully he gets it …but he throws a wrench into what has been happening. You see if this was truly just a virus he says, at almost 2 years post diagnosis..the virus would have run its course by now. What I have he believes is pericarditis brought on by something else, possibly a mixed connective tissue disorder and he is honest and says he thinks I have an autoimmune disease.He also tells me that my pain is real, that people with smaller pericardial effusions are often in the most pain and the previous doctor’s office was wrong to make me feel as if I should not be in so much pain. He orders blood work and a referral to a rheumatologist. His round of blood work comes back in a few days… my inflammation markers are off the charts high, no wonder why I can’t breathe and I am not getting much better. He wants to do a cardiac MRI but wants to consult with the rheumatologist so that I do not have to undergo multiple tests and whatever they do..they get it all done at once. I really like this doctor.
Rheumatology is quite a different story. I go to the appointment mainly because I see it as something I have to do and to rule out autoimmune diseases. The doctor I see is foreign, has zero bedside manner, intimidates the crap out of me and is actually quite brilliant. We talk about me..my miscarriages, how I avoid citrus juice and too many acidic foods because I get those nasty canker sores on my tongue, on the roof of my mouth or on my gums. We talk about how it sucks that I have been inactive because my joints are stiff and sore..worse since I kicked the NSAID medication to the curb to heal my gut. Then we talk about how I am always tired..well I am a mom it makes sense right? We talk about how I got a rash from the crazy sunburn I seem to still have form my trip to California In September and how I think I have rosacea but the dermatologist just thinks I have sensitive skin on my face and how I always have a red rash on my chest. We talk about how the chest pain and lung pain is stubborn and just will not go away ..more so about how I am over it and have tried diet, yoga, Reikki and psychotherapy to get over this. I tell him I don’t want anything to be wrong I just want whatever is making my heart and lungs hurt to just go away. He makes me feel at the end of the appointment as if I am a head case and once again I start thinking this is all in my head..just have to get positive. He orders a round of blood work and I go off on my way. 2 days before Thanksgiving my rheumatologist (to be known going forward as Dr. Personality) calls to inform me that my blood work all came back abnormal, he believes I have Lupus, he was putting me on a medication called Plaquenil to help with the symptoms, that Plaquenil can build up in your eyes and I will need to follow up with my eye doctor since it can cause some people to go blind..”any questions” he asked? Stunned into silence I said no (at least I think I said no..in my head I said no, the words were escaping me) so he says “OK Happy Thanksgiving” and hangs up. WTF just happened there????? Lupus? Wait…I am crazy, I don;t have Lupus. People with Lupus are sick ..I am not sick am I??? That was when the tears just flowed..and flowed…and flowed.
Lupus is manageable with medication and supervision..but this was happening to me and I had a bit of a pity party. the next thing that crossed my mind was..to tell people or not to tell. I simply did not and do not want to be the “sick” friend. I want to have the life I had before pericarditis, before my lungs were compromised, before..dare I say it Lupus. Lupus…this I was not expecting. I was expecting..you are nuts not you are sick. Thanksgiving came and went..I kind of have a love/hate relationship with that holiday,but all the kids home with me is enough to make me count my blessings and realize this is not that bad. I did have to tell the kids what was going on and what the plan was. I decided not to share just yet with my friends or most of my family what was going on. I have a cousin, she is the sister I never had and she was the one I told. Lately she is one of my rocks..family is everything. It took a while to process both on my own and in therapy but I finally let the friends know and not many people can say this..but my friends are the most amazing people on this planet..like I said family is everything..my friends are my family too.
What also amazed me was Dr Personality called back..he said he connected the dots of my symptoms and thinks I have had Lupus for over 20 years and no one ever picked up on it..that is scary to be quite frank. The wrench in all of this is when I develop a rash..a nasty rash that blisters about 2 weeks after starting PLaquenil. I am it turns out VERY allergic to placquenil and because I was taking motrin with it and have a relative who developed Stevens Johnson Syndrome from ibuprofen..I am no longer able to take either medication. I looked like a freaking leper for almost a month..my legs still have scars from where the rash blistered..plan B is immunosuppressant medication..scary shit.
SO now the adventure is to live healthy and to live positively despite all this nonsense. Yeah I am still in my bed more often than not…yes I still have compromised lungs (did I mention I flunked the pulmonary function test? I offered the tech $50 to pass me..he did not find me funny) Yes this is not what I wanted to hear or have happen..but you know what? I have a diagnosis, I have some of the best doctors in the world on my team, I have a treatment plan..I have a wonderful husband and great kids (ok they are massive pains in my ass at times..but no one is perfect) I have 2 adorable dogs..I have amazing friends who lift me up and support me through everything..I have some wonderful family members who remind me that I was me before I was a wife and mother..that I have a tribe where I belong. I have so much ..and I do have lupus..and lupus is only a chapter in my story..Yes I have to rest and not overdo things but there is NO WAY I am allowing Lupus to run the show.