The story of Jennifer
I was diagnosed with Lupus, APS and chronic immune thrombocytopenia about 16 years ago. I remained very productive in my strenuous and fast paced career as a surgical assistant and as residential housekeeper to earn extra money to help support being single mother of four. Up until a few years ago I began to have more symptoms, joint and neck pain increased, horrible fatigue began to affect my performance.
In 2019 it all began to unravel. By spring of 2020 I found myself having difficulty walking, I was passing out, hypotensive, I had swollen and bruised looking fingers, raynauds symptoms worsened and I could barley think clearly or have the energy to get out of bed. I had lost 20 lbs and my hair was falling out in clumps. I finally had to accept that I could not do my job anymore, it was scary and challenging as I only had short term disability for 12 weeks. After a year my employer could not hold my position anymore nor offer me health insurance.
After about 14 months and ten specialists later, I have been diagnosed with APS and chronic ITP which are considered rare diseases. I was also diagnosed with lupus sle, poly arthritis, chronic fatigue, adrenal insufficiency, Supra ventricular tachycardia, factor V Leiden, hypoglycemia, OAB, kidney disease, pulmonary embolism, thrombophlebitis, and the list goes on.
The treatment for my chronic fatigue and triple antibody positive APS is very taxing.
Currently I have two monthly infusions, one is IVIG and the other is a monoclonal antibody. I have 2-3 blood draws every week to monitor platelet count, liver and kidney function, and INR. I take many medications and attend many appointments every week.
ITP patients do not have many or any platelets, with APS I have to use warfarin (an anticoagulant to hopefully prevent more clots) for life due to the very high risk for strokes and clots. Since being on warfarin my platelet counts have dropped and need to stay above 50k. The two diseases are battling against each other. At this time none of my treatments have worked for ITP except for IVIG infusions which last 2-3 weeks. I am now on a new drug again to see if we can get platelets to stay up longer. As you can imagine all of the treatments and medications are very costly. Between insurance and my out of pocket costs it is an average of 25k a month after the write offs for just medications and infusions .
Socially my life has changed drastically. With having multiple blood disorders I cannot enjoy a drink socially, I am immunocompromised and constantly fatigued or occupied having treatment, travel is difficult due to needing lab every few days.
I have met many wonderful people thru this journey at my infusion appointments and also on the ITP and APS support page. I enjoy learn Img ways to improve myself. I am eager to learn from others what they go thru and their advice on what helps them the most.