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Month: March 2008

A gift from the bean

A gift from the bean

I have been taking care of my granddaughter for the past week and I gotta tell ya, she has really grounded me. I think that sometimes I get caught up in the ‘doom and gloom’ thinking when it comes to my life. Being chronically ill means forever. Sometimes that is a little overwhelming and I get caught up in it. I’m still mourning my old self, and I do realize that there is a healthy way to do this and an unhealthy way. I’ve allowed myself to jump into the latter and roll around in self-pity for a while now.

I’ve been hanging out with a 2 year old and she is teaching me a lot. Each day when she wakes up she has the biggest smile. She can’t wait to get up and see what the day brings. Her zest for life is infectious. I watch her and I can’t wait either 🙂 She doesn’t have a care in the world that goes farther than which toy is going to be played with today, and how many kisses she can give out. She is a serial kisser. Last night we were shoe shopping for her and when we got to the checkout she blew the bagboy a kiss. Every new experience to her is a joy and as we were rolling through the store she was shouting out, HI HI to each and every person she saw. Many people ignored her as they wound their way through the store, lost in their own thoughts and in a hurry to get home. The ones that didn’t acknowledge her had permanent frowns. My first instinct was to smack the shit out of them for being so rude to the bean ( a gramma’s love knows no bounds!! Tawanda!!) and then I felt sorry for them. She could teach them so much about being happy for the simple, everyday things.

Odds are I won’t be going back to my old life of working full-time in the stressful field that I was in. But that’s OK. I was fortunate to have been a part of that for the time that I had. The Big C and I don’t go out on the weekends and go dancing anymore, but I WAS fortunate enough to have had my health then and gotten to do that. I have to keep this type of thinking going because I can see a light at the end of the tunnel now. Everything is going to be alright.

I’ve been given a gift by a little shorty that’s 2. She doesn’t know and doesn’t care~she’s building a lopsided wall of Lego’s and smiling.

As promised

As promised

I’m still pulling myself out of the hole….here are some happy pics!

lastberry.jpgpurple.jpg

fallcolors.jpgdeadblooms.jpg

Today was pretty rough. I slept more than I was awake. On Easter. Very depressing.

Tomorrow will be a better day, that has always been my mantra. AND, Spring is here~that means I get to get out when I can and take more pictures. Finding a good shot of something in nature is better than a pain pill 🙂

Until next time

I’m coming back…

I’m coming back…

I’m starting to feel almost human again.  I picked up the computer tonight, so that says something.  Thanks to all the well wishers, I really appreciate it!

Tomorrow, right here in this spot will be something useful, intelligent, (um) and maybe even uplifting!  If I can’t wing that then I’ll find an uplifting picture 🙂

Take care, be well and pain-free

site problems…

site problems…

I just found out that my site is broken if you are reading this from Internet Explorer 6…I guess You Tube videos are to wide for this fixed theme so I’m probably going to change it instead of get rid of the video.  I love the way this theme looks 🙁

I’ll be working on it…

Waaaahhh

Waaaahhh

I am sick. Not the usual daily sick, but the knock down, cough your head off sick. I don’t have the brain power to write anything worth reading so I’m going to turn you on to some of the stuff I am reading lately.

The Oxygen Chronicles
Boobs Injuries and Dr. Pepper
Wide Lawns and Narrow Minds

I’m going to stay in bed, eat chicken soup and blow my nose.  I’ll be back…

My heart breaks for Chelsea

My heart breaks for Chelsea

I just got finished reading a most disturbing story of a teen who had lupus and died. She disagreed with the doctors treatment and wanted to go off of her meds because she felt the complications were ultimately hurting her worse than the disease. She wanted to look into other holistic options. DFC charged the mother with neglect and removed Chelsea from the home placing her with her grandfather. They even placed an armed guard at her door in the hospital so her mother could not remove her from the hospital. Chelsea wrote a letter to the Superior Court Judge, link here, asking for the right to choose her therapy and to be able to go home to her mother. I have a whirlwind of feeling flowing through me right now, anger, sorrow, outrage.

An excerpt from the letter:

“I have already tried what the doctors consider to be the standard of care for the past five years. I have experienced the horrifying side effects of them and realized that they have not helped me in any way. In fact, I feel I have gotten worse and now require dialysis,” Chelsey wrote. “In light of this, I no longer want to use them.”

This is a heartbreaking story of a teen that didn’t want the treatment that her doctor’s thought was best for her. It resulted in her being taken away from her mother, her losing the right to choose her treatment, and ultimately she died while still in the custody of her grandparent and away from her mother. I am so outraged right now.

Have you ever tried a drug that did more harm than good for you? I have. And no one told me I could not stop taking it, or took away my right to choose which direction I wanted my treatment to go. I’m crying for Chelsea’s mom right now, and for Chelsea who was not heard.

Links to the story

Girl in Medical Dispute Dies

Cruz Letter

Mother’s Rage Lives On

About the Video Below

About the Video Below

Wick Davis from the Lupus Foundations Blog, On the Road to a Cure, was nice enough to share this new public service announcement. It features Sarah Chalke who stars in Scrubs. One of the producers for scrubs, Randall Winston has a sister with lupus.

Thanks Wick 🙂

Until next time

It’s a New Day

It’s a New Day

A little medical update on me: I still hurt! hahaha. That about sums it up. My neuro is helping me, (thank God) he thinks the muscle involvement could be due to the possible short fiber neuropathy and he contacted the hospital to try and speed up the referral for the punch biopsy. I feel so much better mentally. I really felt like I was just hanging in the wind when my rheumy called me and told me that he didn’t know what was happening and he didn’t think it was his ‘specialty’. I can’t stand feeling so dependent on my docs. I vowed to myself to get up each day and think positive. No matter what. OK, enough about that.

I posted earlier about reviewing some really good health sites. I’d like to share some places that I think are a really good resource. I’m not getting paid for this, just wanted to let you know that I’m doing this on my own with no compensation.

I was going to write about Revolution Health first, but I am really excited about a new sister site that they have called HealthTalk.com. I have been surfing through the site and so far, I love it. It’s really cool and interactive. Can a health site about chronic illness be cool? That’s how big of a geek I am. Doesn’t take much to get me excited these days.

HealthTalk has a really nifty feature called Health Talk Radio. I love that idea! You can also download podcasts, ask the Dr., view interactive slideshows, videos, webcasts and a lot more. The one drawback that I see is that their list of conditions is not very large. There is a search box though and I’ve popped in a few things that weren’t in their list and hundreds of articles etc. popped up.

That’s it from me for now. I get to spend the next 24 hours with my 2 year-old granddaughter, yay!!!! She is the sweetest kid. I call her my little pain pill. Well, not to her face, I don’t yell out, c’mere little pain pill!! I actually call her bean. But she has the same effect as a pain pill for me without the constipation. And she is addictive. OK, I’m stopping now. If you check out HealthTalk.com let me know what you think. Especially if you get excited over it so I know I’m not the only freak out there.

Until next time

And they go unanswered, for now…

And they go unanswered, for now…

I had a feeling that this would happen.  I’ve experienced it far too many times these past couple of years.  When a doc doesn’t know what to do, they throw in the towel.  My husband called the rheumy’s office for the blood test results and was told by the nurse that the lab missed running the sed rate but all the other numbers looked OK.  So my doc didn’t think it was autoimmune related.  That’s it. period.  I feel very abandoned, I don’t know where to turn now.  They didn’t even want to run the sed rate again, I felt very much like he thinks I’m being a whiner, or worse than that a malingerer.  I don’t know what’s happening to my body, and before getting sick I didn’t have any problems so of course I think it’s autoimmune related.  Suffice it to say, yesterday I had the blues big time.

I find out today the lab results from the neuro’s office.  sigh.  Maybe he can help me, I just don’t know.  I’m still waiting for the referral to go through for the punch biopsy he wanted to have done at the hospital up north…maybe my muscles are related to the small fiber neuropathy.

When I started this blog, I wanted it to be a forum for other people who were going though some of the same issues I am and to share some knowledge that I’ve acquired.  I need to focus on that for now, I certainly didn’t want this site to be a TOTAL whinefest from me, I’m just really scared right now.  I can’t control my muscles, and not only is it painful, it is very scary.

I need to start thinking positively and try and figure out my next step in this.  We learned very early on that we have to be our own champions, I need to figure out where to turn for help now.

If anyone has had any similar episodes with their muscles, I would love to hear from you!

Now, I am going to focus on flipping this back into the blog that I wanted it to be 🙂  I’d like to do a review on one site a week of the places that I’ve found to be very helpful, supportive, and informative.  So that’s my mission for today!!  Positivity and some research.

Until next time…

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