the beginning of my bad days..
I'm 25 years old, it's Friday night & I'm laying in bed.
I increased my dosage of Amlodipine last week. My doctor warned me that the number one side effect is swollen ankles. I took the lowest dose of 5mg for the past month and had minimal bloating, but no swelling. This past week has been very stressful. I noticed everyday this week that by the end of the day my feet looked a little swollen, but nothing too serious or even noticeable by anyone but myself. Until today. My feet were fine until lunch. It was a beautiful day out today and for 15 minutes at the end of lunch my coworkers and I sat on a bench outside. As soon as I headed back into my office I felt a sharp pain where I recently had a Pernio lesion. I was wearing knee high stockings (since I have Raynaud's this has become a habit) so I went to the bathroom to take them off and figure out why my feet were hurting so badly. As soon as I walked out of the bathroom without my stockings on I realized that my feet were beet red and about twice their normal size. I work in a hospital. Within 30 minutes every single person who works on my unit asked me if I was okay because my feet look, "red and weird." Eventually the head doctor told me that I don't look well and that I should leave early for the day. So I called my boss (I'm a social worker) and headed home to change my shoes. Turns out my feet were so swollen that my shoes were actually cutting off my circulation.
Tomorrow I have a wedding shower for my college roommate that's two hours away. I'm just driving up for the shower and then driving back. I'm going to see friends who I haven't seen in almost 3 years. I recently decided to forewarn a couple of my closest friends of my new diagnosis of Lupus in hopes that it would mean not having to talk about it at the shower.
So instead of staying home and putting my feet up I made a poor decision and I went out to buy a maxi dress to wear to the shower and cover my double-sized legs. I'm paying for it now. My feet are starting to look a lot better, I put them up on pillows for a couple of hours. But I am not feeling better. I have a slight temperature (which has a huge effect on me) and to be honest, I just don't feel right.
I know that I'm rambling and it's fine if you stopped reading a couple paragraphs ago, but I'm going to continue my rant! My boyfriend stopped home and asked me to join he and his friend for a drink. I explained to him that I wasn't laying with my feet up in the dark watching a movie for no reason and that I had a fever and wouldn't be joining him since I have to be up early for the shower tomorrow. His response was that there is a fever "thing" going around right now and I better not give it to him. I stated that fortunately he cannot get what I have and he laughed and said that I'm ridiculous.
I get that this is new, not just for me but for him too. I've tried so hard to be patient and to give him the time he needs to accept that I am sick but he's not coming along as quickly as I need him to. He's my best friend and the love of my life, but if he can't get this.. then I don't know what will happen.
I watched Simply Love tonight (as recommended by another post -- that I would link to if I had the energy to do so after this insane rant). The worst thought crossed my mind and I feel so horrible for thinking it.. I have never had a distinct butterfly rash and after watching the movie I thought to myself.. I want that. I want something that you can see. I want people to look at me and know that I am sick. I invest so much into myself to look good and I feel like it is working against me instead of for me.
Thanks for listening/reading. I will dedicate this rant to all of you who are also laying in bed on this beautiful Friday night. Know that you're not alone and that although I don't know you.. I understand you.
Lupus, Secondary Raynaud's Phenomenon, Pernio (Chilblains)