Today while I was showering I noticed hair falling out. Instead of growing now, my hair appears to be falling out severely. I won’t lie I freaked. So I did maybe the worst thing possible. I hit google. Is this the medication? Is this the Sjogrens? Basically, people who have this have mentioned everything I’m going through. Its hard not to fret and worry. Now that I’m home I couldn’t get up off the bed. I literally hobbled off the bed. Its a tough silent battle. Silent? because I haven’t really told everyone. Some of my friends know what I’m up against. There are days, I am ready to take the world by storm and days like today that between losing my statistics text book and my hair falling off, I’m ready to just lay in bed if I could. The meds make me sick, nauseous, sometimes, I just pass out in exhaustion.
I’ve thought about shaving my head before, maybe I can pull a Sinead. I feel bad for my daughter who will be 7. She saw me hobble off the bed and barely be able to take 3 steps and she rushed to rub my back, and help me up. I’m 34. Can I imagine at 60? at 50? People are worried about killing it physically, I went through that phase. I outgrew it fast. I had a body that was envied, and I hated it. I had so much more to offer intellectually that it was always overlooked. Now, I just want to be okay to make it through one more day. To run, to get to the point where I physically don’t “leave” for moments at a time from fatigue. As I lay me down to sleep, I pray the lord my soul to keep…
Like all things in my life everything is exaggerated. I can’t be normal. Maybe it’s my screws upstairs that are missing or that personality disorder is traits that I often talk about. My daughters birthday is coming up. I’m big on birthdays, or was. I would show up to work in a full on bling not plastic tiara for my birthday. My celebration lasted a month. I felt like life itself was a celebration, another year, another day, another chance to change things.
For my daughters first birthday I celebrated with friends and family in New York and Florida. For her second birthday I did the same. Since my daughter is in camp I opted this year to buy a cake for the girls at camp. A friend of mine who’s motto is “the road to hell is paved with good intentions” comes to mind. I wanted to buy her a cute cake. Not a plain $20 cake. So I went with a unicorn cake. The problem? It’s massive. So much so that on a train during rush hour I would have pancake by the time I got to Harlem.
So I decided to call a lyft. The problem is that my driver is nice but he’s giving me anxiety as I sit in the back. He’s taken routes that I’m like what? So here i sit wondering what exactly the bill will be since I’m still in Brooklyn and this trip said it would take 30 min has now become 42. I’m trying to take things in stride. Life is short. I won’t always be around with my daughter. She drives me nuts and I probably threaten to spank her at least 3 times a day. But these are the things that I do to make sure she has a great time. It’s the details, the memories. Kids don’t need much, this I know. But I want her to always remember that I always tried to make her feel special.
Lately I have been commuting by train about 4 hours a day. Why, do you ask? Simply because the children are out of school and I had to put my kid in summer camp. Like most parents maybe you were equally as appalled by the prices. I know I instantly had a stroke when I saw 4K price tags attached to camps for 2 months. Yearly tuition for a private school yes, I can justify that. 4K for two months worth of camp not a cold chance in hell. So I found an alternative that was based on income and worked. Catch 22? It’s closer to my job but I didn’t realize how far from my house. So yes it’s about 30-40 from my job, but I work about an hour away, so do the pencil.
Taking my kid on the train everyday has been an adventure in itself. New York is quite vibrant and quite entertaining in and of itself. Things you’ve never seen I promise you, that here you will see. Case in point the first week commuting with the kid a homeless woman copped a squat in the tunnel on 14th and peed. Now I get and I’m not judging the need to go. But the fact she was bare assed in front of my kid was really something. The good thing is I used it as he moment I told her that’s exactly why I tell her if something falls it’s lost for life. You don’t pick it up. I don’t care what it is. Commuting is something for sure. Just a few days ago I was riding the train with Darth Vader. No seriously. I’m about 5’5 and this guy about 6″ was standing next to me. I don’t know if he had a nose issue or if he was just trying out for star wars but the entire ride to Harlem I felt and smelt his hot corn breath.
The evil part of me wanted to say something but then I opted for my own response of silence. Normally my response to complainers is take private transport, uber it. But that’s not an option so I held my breath, literally.
I haven’t been talking much lately because I’ve been trying to cope with my body telling me to screw off. That’s been quite a feat. I was supposed to get a secondary exam to decipher whether I had sjrogens or lupus. At this stage I just want to make it through the next few months. My work is slipping severely. Today I asked my boss for something she had clearly given me. I had no idea. The fatigue was so strong I litterally fell asleep sitting in my chair in the middle of an affidavit. This is despite the fact this weekend I pretended my legs were broken and I pretty much stayed in bed. My legs did feel broken. In fact the moment I stood up my feet felt like they had been holding an elephant and couldn’t. So I did. The minimal. Sunday I cleaned up a bit. Yesterday I called out sick because I was super naseous and just sick the night before. Truth is it was a combination of that and the fact I physically couldn’t get up because my bones felt like they were cracking like a wish bone.
Of course I don’t mention that. Because people don’t get it. They see you looking fab and the same outside and have no idea there is a war going on inside. One your usually losing. I was losing miserably. In fact I lost. So I stay quiet. What is the point of trying to explain to people when they don’t understand? It’s not malicious it’s just they don’t get it. The pain I’ve had in my hands the past 2 days is ridiculous. It runs from my knuckles down to my fingertips. From my wrists almost down. I haven’t lost my sense of humor or my ill manipulation skills if you think that’s holding me down. I’m just running at a slower pinky and the brain speed, that’s all. I proved it to myself today that I’ve still got it. So one win for a bunch of flighty moments.
What can I do? Life is short. At this point I just shrug my shoulders and call it a day.
Today was difficult overall. It started like a crazy hectic day from the moment I walked into the office. I took it in stride and then it all went downhill from there. My father racked up a few thousand dollars in international charges. I have been paying it down slowly but its affecting my lines. Then, I received a notice that because I forgot to schedule a payment they were going to turn off our lights. That was hard. I made the payment but this all happened in a span of a few hours/minutes from each other. I wound up taking lunch not doing my homework for class and just walking out and sitting in the church next door for 20 minutes. I needed peace, I needed solace.
I’ve been on my medication for the SLE for about a week. Its hard, I sometimes forget, and I don’t feel all that well. I feel tired and most of all achy. It varies on the severity. I stomp around the office trying to work and focus, but some moments my focus isn’t there. My focus is on the pain in my fingers and ankles or wrists and not on what I’m working on.
I compare this revelation of the SLE diagnosis to driving your entire life at 100 mph and slamming the brakes at once and now driving 30 mph. I’ve been trying to figure out my life and figure out what to do with myself. I was and always have been driven but now in the face of my own mortality, I am questioning what I want. All the money I wanted won’t fix what I have. It will make me happier in a lot of regards but it won’t cure me. As I sit here typing, I am thinking about my school work. I have to do something today but the truth is that I just want to sleep and maybe try to sneak in a game or two..
Today was stressful but tomorrow is another day… live to fight another day..
When I was younger in my late teens, my parents became friends with this lady who had a daughter that was wheelchair bound. Her daughter had lupus. She was the first person I ever knew had that. For a while I’ve felt like utter shit. I’ve woken up struggling to get to work to get dressed to function. Pain in my bones that felt like my bones were snapping. Last week I had a bad week. That’s the shit. I don’t feel bad all the time. Just sometimes. Last week was bad. Friday I was miserable. I hadn’t slept well because I had pain in my body to the point I couldn’t sleep. I went to work and it was just a shit day.
The thing is that it’s hard to explain to others what you feel. Not because I can’t express myself but because they wouldn’t understand. I was enraged when I recently found out that I might have lupus or rheumatoid arthritis. I was enraged because this is exactly what I’ve been begging doctors to test me for. I don’t feel good. I feel tired. My joints hurt incredibly. No you’re okay. You’re a mom, a student, an employee.
Well I’m not okay. I hate pity parties. At this moment I’m sort of basking in one as I process what this means for me. Law school? Legal pressures? Can I have a longstanding legal career with its stress since stress is something that I need to reduce? I feel like Dorothy’s house flying around the eye of the storm. I was angry for a moment. Angry that I have to go through another challenge after all of the challenges I have faced. I know I’ll get over my pity party. I know I’ll keep trucking. I just have to reach that point where I’m okay.
My significant other is clueless. He seems to think people on the train are my biggest stressors. No he is, work is. I feel unsupported but the hardest part is that I feel misunderstood. That’s the killer. I feel like no one understands what I feel and it’s hard because it’s something your battling in silence. It makes you feel isolated.
You’re legacy is whatever your decisions,choices and paths you decided to take. You can leave behind a great legacy or a disaster in your wake. The one thing I always wanted was to leave a trail of fire in my wake, not a blaze of destruction but a blaze of powerful influence. Like all things in life, you can use your gifts for good, or you can use your gifts for bad. Facing my own mortality and thinking about the future is both enlightening and frightening.
Right now, my fears in their own way have come out of their closet. I’m battling my own health issues and thing not to let them hold me down. I’ve decided to bask in my own sadness for a moment before I pick myself right back up. I never discourage people to not feel what they feel. Bask in your emotions good or bad because they are yours. There are no right feelings to feel when shit goes south, when you get bad news. The only bad reaction is to not bounce back. You have to. There’s no other choice but to stop crying eventually and keep fighting to see another day.
Today I got news that made me realize that the fire that I storm everything in my life with is fully ablaze. It was the most powerful news for me that I could get. You see, somewhere that I thought I was never appreciated, it turns out that my hard work and due dilligence paid off. I was used as an example. The fact is that I work damned hard to make sure I’m the best at everything that I do. If I plow shit for a living I’m going to be the best damned shit plowed that ever was.
The notification that I got today lifted my spirits from the depths of despair that I was living with fear and worry about my health. It made me once again remember that I’m going to law school. I’m going to ignite an even bigger blaze in my path before my candle blows out in the wind.