Tuesday, July 31, 2007

Falling on butt cures leg!!!!

Okay, how is that for a lead-in??? Sunday I took a spill down about 4 stairs... yes I slipped on my hinny. So, I walk around for a bit and realize, yes my bottom hurts (bruised even), but my leg doesn't. I figured that it would start again once my hind-end stopped hurting... but it has been two full days and it doesn't!!!

Time to start training for the walking version of the Klondike!!!

Yeah me!!

Friday, July 27, 2007

I am an Aunty again!!!

Britton Ian Brown was born today at 11:44am in Ketchikan, Alaska. He is 5lbs 6ozs. Has blondish hair and looks like his dad...poor boy!!! Mom and baby are doing fine!

I will add pictures when I get some.


Given to me by a friend.


Having an autoimmune disorder means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about autoimmune disorders and its effects, and of those that think they know, though many are actually misinformed.

In the spirit of informing those who wish to understand, these are the things that I would like you to understand about me before you judge me...

Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me-- stuck inside this body.

I still worry about my family, my friends, my job, and most of the time I'd still like to hear you talk about yours, too.

Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things.

Please don't say, "Oh, you're sounding better!" or "But you look so healthy! ¨ I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome.

Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of autoimmune disorders.

Please repeat the above paragraph substituting "sitting", "walking", "thinking", concentrating, "being sociable" and so on ... it applies to everything. That's what an autoimmune disorder does to you.

Please understand that autoimmune disorder are variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying, "But you did it before!" or "Oh, come on, I know you can do this!" If you want me to do something, then ask if I can.

In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are--to be physically able to do all of the things that you can do.

Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I feel in my own private time.

Telling me that I need to exercise, or do some things to get my mind off of it¨ may frustrate me to tears, and is not correct. If I was capable of doing some things any or all of the time, don't you know that I would? I am working with my doctor and I am doing what I am supposed to do.

Another statement that hurts is, "You just need to push yourself more, try harder...

“Obviously, autoimmune disorder can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine.

Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language. Also, autoimmune disorders may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now - it can't be put off or forgotten just because I'm somewhere, or am right in the middle of doing something. Autoimmune disorders do not forgive, nor do they wait for anyone.

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood, if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower.

If there were something that cured, or even helped people with my form of autoimmune disorder, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with autoimmune disorders. If something worked, we would KNOW. It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Autoimmune disorders are hard for you to understand unless you have had one. It wreaks havoc on the body and the mind. It is exhausting and exasperating.

Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

In many ways I depend on you - people who are not sick. I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.

I know that I asked a lot from you, and I do thank you for listening. It really does mean a lot.

Tuesday, July 24, 2007

The Enemy Within

A friend was reading an old self magazine and came across an article called "the enemy within" a lady wrote about her life struggles with an autoimmune disease, a line in there was written very perfect that I have to share it with you. She wrote:
"There's no single enemy, no malignancy to rally against. In a way, you are
what's wrong with you. And there's no one to blame, but you. Autoimmune
disease is like a bout of low self-esteem that's gone completely off the rails:
its hard to love and have compassion for yourself when its you you're fighting."
oh...its so true!

Monday, July 16, 2007

Two steps back...

Okay so the good news is the cyst is gone. Bad news… It wasn’t what was causing my leg pain. We arrived in Seattle on Sunday, July 8th and checked into the hotel. With my first appointment at 1:30pm Monday we went and have dinner(IHOP) and a movie (Transformers) before heading to bed. Monday we went to see the Gynecologist (Dr. Tipton). She was very nice and told me the three options that would occur during surgery. Once inside my tummy she would: do nothing if everything looked okay, take the cyst out if needed, take the cyst and ovary out. She was very straight forward and, when she said that if she were me these are the steps she would take, I felt confident in my choice to see her. Surgery was scheduled for 8am the next morning.

Tuesday, Dr. Tipton went in and looked around. The cyst that had been 3cm x 3.5cm x 3.98cm had shrunk or blown-up into nothingness. She took pictures and checked all my internal girl parts before she bailed out. I am glad that the cyst has resolved itself, however I am disappointed that the leg pain is still a mystery. Now I wait and see my Dr. up here and see what step is next.

Tuesday, July 3, 2007

Ketchikan 8+100

WOW! What a fun time we had in Ketchikan. 36 hours on the Ferry, getting in at 3am that first night. FUN! Jonathans baptism was … more that I can put in words. Everything was perfect… I asked JT if it was all he thought it would be, he said “No, it was so much more. I can’t wait until I am 12 and can get baptized in the Temple for other people.” How cool is my little boy?

JT’s baptism started the parade of cakes, we had a great cake after his baptism. Then the next morning we went to Great-Grandma’s church and had cake after, then to Ward Lake for a pre-birthday picnic with 3 more cakes. Monday, after eating leftover cake, we went to the formal birthday party. Great-Gram looked GREAT, 100 years and going strong. There were so many more cakes, and of course we ended up taking extras home. I think I ate cake everyday of the trip.
We got to hang out with all of the family. We met Miriam my new niece. Her and JT had several bonding moments… He loves her lots. There were so many cousins that I had no idea who most of them were… I just knew they were related. After a week we headed home on the ferry, only 24 hours this time. And that included circling in Auke Bay for at least an hour. I am glad the kids got to spend time with Great-Gram, and Grandma, and all the cousins.