Less than a month and I'll be 19.

I saw the doctor today, and thankfully didn't get a lecture about skipping the last appointment. I brought up to him an itchy rash I have on my body and some back pain. He said the rash is probably viral, and that my back pain is probably related to Evans. He explained what it is but I'm not remembering right now.

I think that now, since I'm keeping a steady journal, would be the time to also begin recording my doctor's appointments and blood counts. It is one year and five months since I was diagnosed. It's gone by very fast.

So much has happened, it's very surreal. I never doubted my survival while being diagnosed and going through treatments but I guess my mom wasn't sure at all. I mean, this was a huge shock to us. We thought chronic fatigue, mono, thyroid issues. We thought those were the causes of me being so tired all the time. I can't believe how stupid and naive we were.

Looking back, it was so obvious something was definitely wrong, but we always blew it off, kind of in denial. The signs were very clear: four very swollen lymph nodes (one underneath each arm, about the size of a kids fist. One a little bit smaller under my right collar bone, and one the size of a grape that stuck out underneath my right ear.) but they weren't painful, just rather annoying.

I also bruised very easily, and I always just thought I was sensitive. Just leaning my forearm against the edge of my desk to use the computer mouse would cause massive green and purple bruises which stuck around for at least a week, sometimes two.

I was always sick and never completely over the last cold I had. I was so exhausted, I could just sleep and sleep. It was really difficult to get out of bed on a lot of days, so I missed a lot of school.

I blame no one. Well, I guess I do think this could have been found sooner through better doctoring. When I first discovered a lump under my arm, the armpit area, I was alarmed. We were learning about breast exams in health class, so I performed one on myself and found a lump - but it was in the pit area, not really that close to my breast. I was only about 14, but it concerned me, so we went to the Community Health Association of Spokane, where they didn't do any blood work. They did an ultrasound on the area (which was pretty damn uncomfortable.) The ultrasound showed nothing, and they prescribed me Penicillin, which also did nothing.

I'm addicted to writing in this journal.

I think this isn't a bad thing at all. I write about what's on my mind in a neat little book and it's kind of therapeutic - and I definitely need therapy. I never really seem to keep up with journals because of my paranoia thing. Somehow my brain gets wrapped up in some neurotic idea that someone is going to read all of my thoughts and doings and use it against me. Deep down I know nobody cares.

Tomorrow is my first doctor's appointment in a long time. Not because the doctor told me I could live life for a couple months, but because I'm a bad girl and skipped my last appointment, then didn't bother making a new one.That place makes me feel so much worse than I already do.

I figured I should finally do it. My back has been hurting and I have a 'heat rash'. I've gained a lot of weight and have tried doing eight minute tae-bo, but it's way too difficult for me. My balance is really bad and I'm not that strong. It's a very hard workout.

My Last Name on Google Search

My dad's name comes up. I don't know why, he's been dead for over a year. Besides that, he never had his name in the phone book.

Again, I don't know why, but I called the number listed for him. I listened to the operator say, "If you have reached this recording in error, please check the number and try again." twice before it automatically hung up.

First Day At the New Job

Tonight was my first night as a Candy Hut Sales Girl. It went alright. The till is a little hard to catch on to & I made myself look ridiculous a couple times, but it seems like the job is mostly customer service. I have that down PAT.

I had another interview today

At the Candy Hut at the mall. I think it went well - I'm fairly sure I got the job.

Dream Entry

I was at this big house with my mom. And we went outside for some reason and my dad pulled up in a car with our dog, Clancy. Clancy looked happy, like a puppy again, and dad looked how he used to. Not bloated, not old, not miserable. He showed us a parking ticket or something that he had gotten on May 4th, 2002. But in reality, he died on April 29th, 2002. He came to show us this, and he said that he had been alive for another week after we thought he had died. And it wasn't a suicide, it was a car accident on some street in Seattle. He said that, now, he had to hang around that street for all of eternity. He was always there. And I kept asking him why he was here if it was just a one-time deal. And he said "Yeah." He wouldn't answer any questions about why he was there. He wouldn't tell me anything except that he is always on this street.

I hugged him. It felt so good. I miss him so much. The one year anniversary of his death is coming along soon. I can't get overPost Options how real it was.

Anyway. I have an interview at the Dairy Queen at the Mall in about an hour.

Doctor's visit.

I went to the doctor today, and I have to keep up with the 10 mg of Prednisone every other day, and I no longer have to get shots weekly.The last one I got left a huge bruise - it was not pretty, and it hurt. Hurray!

How to Contact Me

I check my email and Myspace pretty frequently, so you can easily reach me through either of those. I like using gmail and facebooks chats, and sometimes you can find me on AIM.

Email: narrance @ gmail . com
Myspace: http://www.myspace.com/mjn
Facebook: http://www.facebook.com/profile.php?id=718111245
AIM: swLsssmLsss

About Me

My name is Swiss. I'll be 24 in August of this year. I was a pretty sickly kid, and my family chalked my tummy aches as either an attempt to get out of school, or a cry for attention from a stressed out kid. In high school I was the Fundraiser and Ad Sales Director for my school plays, which was a pretty high stress position but I really enjoyed it, as well as a part-time fast food job and my schooling. By senior year I felt thoroughly worn out. I was finally put on state medical insurance, and I urged my mom to take me to the doctor. We suspected many things that could be the cause of myself being so tired I couldn't get out of bed. Hypothyroidism, which many members of my family have, Epstein-Barr Virus, Mono, Chronic Fatigue Syndrome. They all sort of resemble each other. I know that my mom and I weren't expecting a call the next day telling me that I had Lymphoma.

After several wrong diagnosis', four years of seeing a terrible (and nearly abusive) pediatric oncologist, three years on prednisone, and more, I'm finally seeing a wonderful rheumatologist who has diagnosed me with Lupus and Fibromyalgia. Whereas my former doctors' diagnosis never really sounded like my symptoms, I researched Fibromyalgia and Lupus and it clicked - these two illnesses together is what is going on with my body! I got off the prednisone and on a medication regiment that actually works. I've been told I can't work again and that I should apply for SSI benefits, which I am currently awaiting my "appeal before a judge" date.

I feel like having Lupus along with Fibromyalgia magnifies, and changes the effects of Lupus to an extent. I've learned many things about my illnesses by researching them. I've tried many things to relieve certain symptoms. I want to share these things, so it's easier for you and your loved ones to cope.