Wednesday, June 9, 2010

This Post is too Long, Sorry...

Being 19 is like, being a baby.
I feel so small and little, I feel so young and scared.
The world is such a big place, such a big scary place full of lots of people, and the more I venture into it, the more I feel like I'm just another number, another piece of the earth that no one will really ever notice or care to fix. I just want to feel normal.

I went to Niagara Falls in May, on Victoria Day weekend. I went with my boyfriend. I left Ontario for the first time in my whole entire life. I went to Buffalo! We shopped, I got a dress for his cousin's wedding that was the following weekend. It was actually fantastic. We had a hotel (on the Canadian side), we ate at Applebee's, we did some of the stuff like wax museums and whatnot. It was good, our relationship has been great since. I know, it's been like three weeks. Regardless, I never knew how badly I needed a trip. A vacation to just, unwind. There was no stress, there was no worry. I didn't have any responsibility.

I was still in pain. Lots of pain. I woke up all through the night with hip pain, but fortunately I had someone to massage me back to sleep, which was nice for a change. But after the trip, I've been having horrible leg cramping, the veins in my legs, especially calves, are really noticeable, almost varicose. I have tons of spider veins as well, and if you even lightly touch them it hurts. I've been getting headaches and when I walk I feel like I can't pick my feet up high enough off the ground, which makes me trip.

Before I went away, I was walking home with the kids from a convenience store carrying a soda bottle, my hand just released it and the bottle shattered everywhere. Fortunately I was the only one who got a tiny cut from the glass, but it scares me that I did it. My joints are starting to swell at night, and sometimes I can't type at all. My Fingers ache and stiffen up in the cold, my ankles, knees, hips, lower back, shoulder blades, elbows, neck, you name it, ache and creek and crack. I don't really know what's going on, sometimes I can't straighten my fingers because it hurts so badly, and my wrists are doing the same thing.

I went to the hospital on the 2nd and had a trans-esophageal echo cardiogram done. Er - was supposed to have done. Apparently the drugs they used on me made me very emotional and anxious. All I remember was extreme pain in the back of my throat and coughing. When I woke up my dad was there - which made me freak out more because he wasn't even supposed to be at the hospital that day - holding my hand. They said I told them my throat felt like it was closing and just kept crying. The doctor said that from the three other echos I have had done, the hole is very tiny and this test is not urgent. The only thing is that I need to tell a doctor that I have a hole in my heart when I try to get pregnant, and when I have babies they need to have echos done of their hearts at birth.

But I'm never having babies because I have vulvodynia and I'm never getting better from that so I can't ever have sex because if I want to it makes me hurt so bad I can't do anything but lay down with a wine bottle between my legs and sob. Yeah, we went back to the Falls for a night after driving a friend to the Buffalo airport, and things went awry. Long story short, that's how my night ended, wine bottle between legs, lots of tears, and a boy who just doesn't seem to understand no matter how hard he tries to.

And you wanna know something? (probably not) I wake up every day, I get ready, I go to work, I sit in my chair and do my job, I come home, and I make supper. I try to take care of my dog, I help with my grandmother, I try to do the best that I can. But sometimes I just want someone to do it all for me, because I drop everything, and it hurts to do anything. And he, like everyone else in my life, just doesn't understand the difficulties of my day to day life. Like, I feel that everyone thinks I'm making this stuff up. I'm constantly asked to do things that I can't always do, I take it from minute to minute.

And sometimes, gosh darndit, I need a break. I need someone to plan and DO everything for me. I would love to take a mini road trip, just a weekend, like for the Falls again, only drive out to the middle of nowhere, somewhere near a lake. Just drive around, look at some cute little towns, explore, stay in a cozy hotel for a night or two, and come back home. But I don't want to plan the whole thing. The whole point would be so that I don't need to think.

Can you tell there's a lot on my mind? I don't have my ultrasound until JULY and my CT scan isn't until the end of this month. I'm going to my doctor tomorrow about my new symptoms, and my goal for 2010 is to get a full, proper diagnosis of what is wrong with me. I know it's June, but that's my resolution.

I will have every test possible done until we come to a conclusion. But for this month, I'm personally leaning toward lupus. I know it was "ruled out" two years ago, but after everyone I've been talking to, and the fact that I tested positive, even if it was at the low end, I'm thinking this might be it.

Now my battery is dying and this is a million years long. So I will talk to you all later, and I wish I could talk to you all face to face.

Love,
Natalie

6 comments:

  1. this post is FABULOUS. parts of it read like poetry. i thought about it at work today :)

    i am so sorry you're having so much trouble. i really, really hope they figure out what's wrong soon -- you are too young for this crap! have you talked to a rheumatologist? someone i know has rheumatoid arthritis...sounds similar, maybe.

    lupus is not terrible-terrible-terrible, i hope you know. i know a few people living with it and they do okay. they have flares and get tired, but medicine does a good job for them. not easy, but manageable.

    much better than living with a mystery!

    keep us updated, and if i am out your way anytime soon i will let you know. i would love to meet you :)

    ReplyDelete
  2. Hey Esther,

    I saw a rheumatologist two years ago when I started having random joint pains. He tested me for lupus and it came back at the low end of positive, I don't remember my ANA count, but he was only slightly concerned. Since I wasn't displaying enough symptoms they decided to rule out lupus and when my symptoms slowly disappeared, they just ignored it.

    Now that everything is flying out of control again my GP is pretty worried, I just saw him today and he's sending me for another ANA test. He thinks it may be lupus, but it's just taking it's sweet time to show up properly.

    My mom's good friend has lupus, only hers is one of the worst cases they've ever seen. I know it can be somewhat manageable, I know two other women who have it and they work fulltime jobs and had babies. I just hope I can be more like them, if this is in fact what I've got.

    If you ever are out this way definitely let me know! We can sort something out.

    ReplyDelete
  3. I'm sorry about all that. I hope you get diagnosed and get feeling better! Vulvodynia sucks, I was just "officially" diagnosed this Wensday and I'm having a party in my self-pity boat lol.

    I understand about wanting someone to take over for you, I do as well. Also I have fibromyalgia and everything hurts and I'm a klutz due to it, gets old mighty fast.

    ReplyDelete
  4. I mean I hope you get diagnosed for Lupus, not for other stuff. I'm braindead today, sorry about that.

    ReplyDelete
  5. Natalie, I hope you still go on this blog, but are you still in pain? I'm 20 and have the same thing as you, I feel so depressed :(

    ReplyDelete
  6. I was diagnosed as HEPATITIS B carrier in 2013 with fibrosis of the
    liver already present. I started on antiviral medications which
    reduced the viral load initially. After a couple of years the virus
    became resistant. I started on HEPATITIS B Herbal treatment from
    ULTIMATE LIFE CLINIC (www.ultimatelifeclinic.com) in March, 2020. Their
    treatment totally reversed the virus. I did another blood test after
    the 6 months long treatment and tested negative to the virus. Amazing
    treatment! This treatment is a breakthrough for all HBV carriers.

    ReplyDelete