My current state of health is an odd one. I am in constant pain, yet I push through my day just like I always have because it is what has been expected of me. I feel by ignoring my illness for so long, and continuing to do the cooking, cleaning, shopping, laundry etc etc, I've set a precedent. Even on days I wanted to stay in bed because it hurt so badly in every fiber of my body, I still had obligations. Some of those obligations I put for myself, and I did not mind sticking to them. So please, do not worry about those obligations that I enjoy doing.
But some obligations...I did not choose. When my mother left to do her "nut out I'm in love with my boss thing"... I was left to do everything that she helped with or did outright. This included taking my father to work and picking him up everyday since he lost his license. An hour in the morning(in rush hour traffic), half an hour in the evening, the pain in my hips some days indescribable. It also included menu planning, grocery shopping, cooking all the meals, doing all of the laundry, all of the cleaning, and making sure the animals all had food and water each day. It exhausted me because of the state of the house it was left in before I picked up with it. My parents are slobs. I wasn't able to just pick up hitting the highlights on a weekly basis, but rather having to tackle nasty jobs just so I wouldn't lose my mind. This worsened my condition, but I never said anything. I felt if I said it hurt too much, that I needed to spend the day in bed, that I'd have people upset or mad at me. Or tell me I was lazy. So I plowed on.
Plowing on day to day has led me to now. Last Monday, October 15th, I saw a doctor for the first time in 4 1/2 years. It was one of the worst experiences in terms of emotional distress and blood pressure spiking I think I've ever had. All I could do while sitting in the waiting room was try to remember everything I wanted to say, all of the symptoms, what bothered me the most, and how I was going to make my case so the doc didn't think I was just fat, lazy, and crazy. I needed this validation of how horrible I feel every day of my life for several years now.
She believed me. She listened to me. She even came up and started pressing on certain points. My first reaction was to take it with a stone face like I always did whenever someone touched or pressed on one of my many tender and painful spots. But I had to tell myself to show the pain. Let the doctor know how much it hurt. I almost didn't know what to do. I didn't know how to show the pain, but I seemed to communicate it to her well enough. She said I was hurting on nearly all of the fibro points, she was going to refer me to a rheumatologist. I was ecstatic... yet so sad at the same time. All of this could have been avoided if I'd just gone to the doctor when I started feeling terrible. Maybe I wouldn't feel so badly now if I had gotten the help then. But I couldn't change the past, only the future. Then came the blood draw... I don't want to go over it again. I don't do needles going into a vein well at all and am still recovering from the panic and pain brought on from the experience. Sadly, it was the best blood draw I've done since I was a child.
The call came the Wednesday after (10/17) and it brought the first word of great and terrible news. My blood tests had come back. Very low Vitamin D, anemia, my white blood cell count was a little elevated, my sugars were borderline diabetic. And the final result. I tested positive for lupus. I was going to follow in my grandmother's footsteps of a life of incurable pain. She has lupus and a myriad of other illnesses, some I may have later in life as well. I don't want to live in the same pain and difficulty she lives in every day.
The nurse said the rheumatologist will give me a call to schedule my appointment, and asks me what pharmacy to send my Vitamin D prescription to. It was a blur. I was in walmart at the time, I had to hold it together. I finished my shopping, came home to put the groceries away, and I never broke down. I still haven't. Even while I have been reading forums and posts online about lupus, how it can be the great imitator, I haven't broken down yet. Maybe I don't believe it. So many others didn't have their diagnosis for weeks, months, years. How come I got one within 2 days? How was it so easy? "It can't be lupus" is something I think my subconscious is currently telling me. Or what if it's worse? Wait to have the breakdown if it's worse. What about lupoid sclerosis? What if it's just fibro? What was in the blood tests that led her to believe I have it? I have to wait to have my breakdown after the rheumy appointment. I think this is what I've decided. Wait to see what he says, then decide when to cry.
My blood pressure monitor, $40, wrist cuff.
Since Monday, my diet has been changing. I've been taking my blood pressure at odd times of the day and recording them for my doc, and I've been doing as much reading as possible to be ready for my next appointment. I want to be able to absorb all of the information I will be getting soon and have a real conversation with the doctors so I can get the treatment I need.
--Sigh--
I know this post got long... so very long. And a bit ranty at points. But if you're still reading, I thank you. I promise my next post will be a bit lighter. I will continue to do posts on my diagnosis and keep you guys updated, but I will also have posts on just everyday life things. Tips, crafts, recipes, etc. I hope to record my life here and I thank all of those who will join in on this journey with me.
xoxo
Carrowyn
