If you have ever wondered what it feels like to have an unseen disease, I will tell you. I am currently at work right now. I am attempting to type, something I have done for years and years and I am quite good at it. Only now all of the sudden my fingers won’t work well. I spend more time correcting mistakes then I do typing. Some of my fingers are slower and some won’t bend as easily as others meaning I hot the woring buttone and have to somctantly correct myself. (I didn’t sorrect that to show you how bad it is.)
I’m frustrated to the point of tearing up because this isn’t me. I can type very well. I am also tired, not ugh I’m a Mom tired. I am I tried to untuck my shirt from my pants tired and had to rest my arms because it felt like I had been doing pushups all day tired. All I did was untuck my shirt! As I am typing this I can tell you I have this needle poking in my stomach pain that is neverending. It joined me yesterday and will come and go periodically. I also have the bottom rib on my right side that feels like it is separating from my body it hurts constantly and I can’t sit comfy at all. I forget words I know how to spell like separately (thank goodness for spell check). I once forgot how to drive home. I was with my kids and had to google my address and directions.
I woke up last night drenched in sweat. No reason, just a 101 degree fever that is gone in the morning. My left thigh has a spot about the size of my fist that is almost constant nerve pain. Remember when I was walking up the stairs yesterday and stopped to chat? That was because I couldn’t make it up without stopping but I can’t stand people looking at me like I’m sick. So I have learned to hide it.
I have been to so many doctors and hospitals through the years. I’ve had countless tests and each time they tell me “I don’t know”. They always offer me pain pills. I don’t want pain pills I want to be fixed! Sometimes I am so tired all I can do is crawl in bed in defeat. Sometimes I’m too tired to eat. In front of you I will exhaust my last ounce of energy so you can’t tell. I hate how it makes me feel so weak and tired. I used to be a very busy strong person and I feel that slipping away at times.
My toes and fingers will go numb periodically, it doesn’t even bother me anymore it happens so often. I get nauseated periodically especially if I’m not careful what I eat. I’ve lost four children. My first loss at 9 weeks can be explained but the following 2 losses at 5 mths along? My last loss at 13 weeks? Those aren’t coincidences but no one can give me answers.
I have painful nodules in my muscles, I have sporadic nerve pain, I have muscles that feel too short at times, I have numbness in different areas, I have brain fog, memory loss, lack of appetite, insomnia, night sweats, heart palpitations, fatigue, stiffness, unexplained rashes, joint pain, weird eye symptoms… Oh yeah one time the whites of my eyes filled with blood… that is not normal! I get frustrated and snap at my husband because I go from feeling like a hypochondriac lunatic, to wondering what is wrong with me. I constantly feel like it’s in my head until I feel bad enough to know it isn’t. Am I sick or mentally ill? Being undiagnosed is horrible! It’s living with all your symptoms and carefully hiding them so you don’t have to explain to people who ask what’s wrong that you don’t know.
Completely lost with my APS and what to do next ? 
Diagnosed with vasculitis
Newly diagnosed with APS
Still waiting for scan!
