What are your conditions?
Antiphospholipid Antibody Syndrome, Probable Lupus
What is the longest you have gone without showering?
Uhhh 4-5 days during a really bad flare when I was experiencing hellacious joint pain and extreme fatigue. I wasn’t doing anything to get smelly and it hurt so bad to move so I feel no shame!
When was your last ‘good’ day?
Today I am having a decent day! It was PT/INR day, INR was 2.9, and I’ve been in good spirits. Joints aren’t hurting, and the only thing that is really bugging me is a butterfly rash, I’ll call it a good day!
Worst day in your ‘sick’ life?
Hmmm my ‘sick’ life is still pretty new, and there are some pretty bad scary days. My diagnoses are new so there are several of them that sort of blur together, but one that really stands out is a day in Oct. where I was going along and passed out right before dinner, got up, had already learned going to the ER over passing out was pointless, they do not seem to care if you had previously passed out if you were able to come in on your own accord. I ate dinner, then on the way to the couch I was hit with the worst headache I have ever had in my entire life. It dropped me to my knees. I threw a glass of water at my husband and curled up in a ball. He and our roommate rushed me to the ER that was in network with my old PCP. The thought was they would be able to see his notes and realize that it was suspected I had APS and they would know to check for clotting related stuff. What a nightmare. To make a long story short I 11 hours later I was heavily drugged and sent home with an unspecified headache, we are pretty sure I had a TIA that evening that was missed by the ER staff that night. I will never go to that hospital again, and that is alright. I have since changed PCPs and he is in network with the other larger hospital in our city which I have always gotten quality care from. I should of never gone to the other place.
Who is your favorite doctor/specalist and why?
Doctor- my PCP Dr. Carter, He has been my doctor for just a little over a month. I had to change due to insurance reasons but it has been a blessing in disguise. He has been great and has really been there when I’ve needed him the most. It has been a crazy month and I have seen him several times due to flares and other issues. He never missed a beat. I know I am in good hands, he also has a good sense of humor and best of all, he listens to me and realizes that I am a good source of information on my condition…because I live with it everyday, and that APS and Lupus aren’t textbook conditions, that they will never be just how a book says they will be.
Specialist- Dr. Browning my Ophthalmologist, he was the first person to mention APS to me when he diagnosed my Branch Retinal Vein Occlusion back in October and he got me on the road to a diagnosis. He has also been a great source of information, helped me get my old PCP to prescribe me Plaquenil back when he was convinced I didn’t have Lupus based on one negative test result (that’s a story for another time), as it is looking more and more like Lupus for me.
How many miles to your nearest hospital?
6.2 Miles 11 minutes and a straight shot up a main road from our house to the ER. But trust me we can make it in much less time than 11 minutes when we need to. LOL
Longest admission? Shortest admission?
Fortunately I have not been admitted to the hospital yet.
How long have you been ill?
Officially diagnosed in Nov. 2013. But looking back I’ve showed symptoms of both Lupus and APS since I was a teenager… so if we go on symptoms 15years. But we will never really know.
Biggest fear relating to health?
The unknown, the uncertainty, and at the same time, the knowing that for the rest of my life my migraines are not just migraines, that they are symptoms of something far more sinister. That my blood is too thick and clots too much. I’m a micro-clotter so I start clotting pretty quick if my INR is too low. I’m pretty terrified of having another clotting event, I already lost a bit of my eyesight due to a clot in my right eye, I live in an almost constant fear that at any moment I could lose more of it. I also fear I may become a burden to my loved ones.
Are you undiagnosed at all?
Yes. sort of. My old PCP prematurely dismissed Lupus based on one negative lab result even though I had several symptoms/signs of Lupus. My new PCP and Hematologist have me scheduled to be fully evaluated by a Rheumatologist and suspect that he will officially diagnose me with Lupus. I have enough of the inclusion criteria to be diagnosed with it, and I’m already on Plaquenil and it is helping with the symptoms so that looks like more evidence in the Lupus category.
Worst doctor you have seen and why?
Dr Mark Schaeper. I saw him once at the very beginning of this. I had developed splinter hemmorages under all my fingernails, and when I showed them to him he said ‘oh honey those are nothing to worry about.’ Wrong!!!! I quickly got my mom to get me an appointment with my childhood PCP.
What will you tend to do at nights, when you can’t sleep?
This is no longer an issue, I am on Mirtazapine and it knocks me out.
Worst experience/side effects of a medication?
Topamax, there are too many to list but that medicine is the devil, but any medicine that causes the bodily sensation of shrinking or growing should be done away with. lol Plus having to drink 100oz of water every day gets old.
Warfarin I’m learning to live with and I’m no longer letting it control me. Dr. C and Bonnie will be adjusting it to fit my eating style. I love veggies and I will be eating them, the key is consistency not exclusion of Vitamin K rich foods!
Describe your social life:
I have a close knit small group of friends. We get together and hang out on Friday nights and on other occasions. I’m more comfortable in small groups, and prefer grabbing coffee than going out to loud bars/etc.
Favourite comfort food?
good home cooked meals. Soup makes me happy.
Tell us a valuable lesson you have learnt, through being unwell?
Pace yourself, and know that today’s pace may be different than tomorrow’s.
Name 3 things that you miss, taken from health limitations?
1. Being able to just do things without having to plan around my illness
2. Being comfortable in my own skin, It will come back to me I am sure but right now I still feel like a foreigner.
3. Coffee, real coffee, I stopped drinking it back in August to help treat the several types of migraines I was having.
How old were you when you started noticing symptoms?
I was 29 when I was diagnosed and realized I had symptoms of illnesses. Looking back I realize I’ve been having symptoms of them since I was 15.
Worst advice you have been given about your health?
Most of the advice I am given is given by people who mean well, when I take that into account, most of it is then just advice that is given by people who love me, who want to help me, but do not know how.
Can you remember being pain free?
Yes, and even now I have pain free days. Especially now that I have finally asked for help from Dr. C. I went way too long without asking for pain relief.
Do you know anyone in real life who shares your condition?
I know several people with Lupus, it runs on both sides of my family and I have friends that have Lupus. I have not met anyone in real life with APS yet though, maybe some day though.