Posted by: hockeygrl1 | November 7, 2013

Counting down the days

Yep, I’ve been counting. 3 more days and then at 9:00 Monday morning the doctors visits and tests begin. I’m both scared and hopeful that we will get an answer. I want to know why my pancreas keeps acting up and it causes the worst pain and makes it impossible for me to eat. I need to know if it’s lupus or something else that is cussing the problem. No doctor has been able to tell me that although my first documented bout was with a huge lupus flare. I also need to know why I keep fainting, that’s the real reason I’m not at work.  “Here’s your coffee ma….. and I fall to the floor. Not good.

I’m scared. What if the news is horrible!?  There could be more wrong. I can’t think of anything else, I mean what else can destiny throw at me? I already live in my parents basement. That’s bad enough to this highly competitive person. It feels like I’ve lost already.

With that said, I don’t know what another disease will do to my mental health. It’s hard enough to get doctors to believe you. The first time I had pancreatitis, it took 2 doctors visits and 2 ER visits for them to figure it out.  It was because I didn’t look sick and the pain didn’t present itself in the place it “normally” would. The doctors just didn’t take the time to listen and I didn’t take the time to be pushy and fight for my healthcare rights. I’m also the person that goes to work sick. I didn’t have a fever with the vomiting caused by pancreatitis and the doctors kept saying it was stress so I went to work. I hope the doctors believe me and find something they can fix. No more just live with it because we don’t know enough about it crap.

Back to the doctors not believing us for a bit- I believe that the majority of people do not want to be sick, therefore, doctors should take more time to figure things out. They need to do the tests, start with the inexpensive ones. Hell, a simple blood test can diagnose pancreatitis, it can’t tell you why you keep getting it but ay least you have a place to start.

I’m at a point where I both want to and don’t want to know what’s going on. I mean how much worse can it get. Lupus can cause any organ to fail so it is possible that it is the cause of the problem with my pancreas, but if it is I can’t take most of the current drugs to treat lupus. And if it’s not, what would it be, cancer? And of the pancreas? Yes, I’m scared.

I need to help my kids yet and see my nieces and nephew grow up.  There’s a lot I need to do yet. 3 more days and it all begins.



Posted by: hockeygrl1 | November 5, 2013

Its Been a While

I haven’t written in a while. It’s partially because things were going so great. Almost all summer I was running and exercising and eating right.  I ran 3 5k’s and was feeling great. Work was going wonderful; 40 hours a week and talks about promotion and I was as happy as ever. I hadn’t imagined this happening since my diagnosis.

Then it happened. My back started aching and the nausea came back and before you knew it, I was back in the hospital. The first visit was for 4 days in our small town hospital. They didn’t run any tests other than blood tests. That pisses me off.  Yes we know that its pancreatitis, but we have no idea what is causing it. On top of it all, they let me out before my blood test was normal.

That landed me in a different hospital a month later. Still no major tests; just an ultrasound, but this time I left when my blood tests were under control. Another great thing is there was a decision made to send me to the Mayo Clinic.

So now I wait. In 5 days we head to the Mayo. It sounds like they are planning my tests already…. talking about a biopsy and things, I just hope that they figure it out for good this time. 

I got myself a tablet so I can keep everyone up to date and take notes about my treatments. Look for that info on my facebook and blog.

Wish me luck.

Posted by: hockeygrl1 | July 2, 2013

I inspire you?

It’s been nearly 6 years since I was diagnosed with lupus and since then a number of other autoimmune diseases. There have been a lot of ups and downs and even setbacks, but now I’m really on the road to recovery.

My recovery really began during the hockey playoffs because of a goalie. Josh Harding a Minnesota Wild player was diagnosed with MS last fall. It was a shame to see such a young player struck with such a serious illness. I didn’t think he’d return to the ice…. but he did.

I was reading and hearing about his story and how he was still on the ice despite his MS symptoms and medications thinking to myself “why can’t I do that?” I mean MS is as serious as lupus with fighting fatigue and he was having difficulty with his vision. They also were saying that they were treating his MS aggressively and there is no way to predict his future.

Wow…. I can relate to this. I mean fatigue is something I fight with all the time and future… You can’t predict that with lupus either. How I feel from day-to-day can change dramatically.

But, He was playing pro hockey and due to an untimely injury to a teammate, in the playoffs. Not only playing, but making great saves! And he has an autoimmune disease!

I decided that if he can play pro hockey, I can fun a 5k. OK maybe not run all of it, but finish for sure. So I started running. While running I found that I could find my center again. Even though it kind of sucked, it felt good as well. I also joined a run club and I run with them every Monday.

I did finish that 5k. I walked/ran it in 45 minutes. In the run club I’ve been focusing on just running 1.5 miles. The first few weeks I had to walk/run it, but the past 3 weeks it’s been all running.  I’ve gone from 26 minutes the first week to 19 just yesterday. My mile split yesterday was 12 minutes! So now the focus is running the 3 mile or 5k loop next week. My personal goal is to run the first 2 miles……

Back to my title. I’ve been told by a few people now that I inspire them. Let me tell you that every time I hear that it brings tears to my eyes. I never stared this to inspire others; I started it to improve me. I am improving. I’ve lost 20 pounds and it’s still going down. I have more energy and my depression that has been present and heavy ever since the diagnosis really set in has lifted. My outlook on life and just everything has changed.

I know that I can do anything even with lupus!

So if I inspire you, thank you. It is the greatest compliment ever and I will continue to do all I can to keep inspiring others.

Josh Harding said in a Star Tribune interview “Whoever is having a tough time with MS, if I cannot let this get me down and continue on to my goal, maybe that’ll help them out,” he said. “If I can help one person, that’s all it takes for me. If I can help out 100, it’s even better.”

He’s helped this one person out with lupus for sure.

Posted by: hockeygrl1 | June 17, 2013

I Did It!!

Yes, I did.  I ran (walked) my first 5k. Yep, almost 6 years from my diagnosis of lupus, fibromyalgia and a host of other autoimmune diseases I ran (walked) a 5k.

It wasn’t easy, but things never are. It took training and determination and a little support from my friends and family. It did take me almost 45 minutes, but I take that as a time to beat.

I was always trying to beat my best time in the 500m freestyle in high school and this is just another number like that. I’m going to do a 5k a month to see if i can do just that; improve my time.

Being centered is the key. I guess I’m not good at being the chatty one while I exercise. I need to focus on my running and just listen to my music. Counting in my head helps for some reason. I know it sounds crazy, but it’s what I do.

I really became motivated after Josh Harding of the Minnesota Wild was diagnosed with MS. I figured if he can play pro hockey with an autioimmune disease, I can get into shape and run a 5k.

So my saga continues…. More running is in my future. I have joined a run club so I run with them every Monday and I’m looking at some events to do every month.  This is a new and exciting chapter in my life.

Now if I could only find a man to run with me 😉

Posted by: hockeygrl1 | June 10, 2013

I began to run….

After a 5 year flair, I’m finally feeling better. I’ve got a job and I’m training to do my 1st 5k. I’m going to run it.  

I started training about a month ago. It’s funny to think that back then I could hardly run for 1 minute and now I’m up to 8 minutes.  I downloaded a couch to 5k app in my Iphone.  It’s great. It’s slowly getting me to run more than walk. I’m kind of scared because my next session is running 20 minutes straight. I haven’t done that in years. (It went great)

The 5k is on June 15 so I have a half a month to get there.  My sister is running with me. I’m shocked!! She’s never wanted to do anything like this with me before.  Maybe it’s because I’m doing better. i don’t know.

I’m just happy that the 5 year skid seems to be done and hopefully I can stay healthy for a long time and live with lupus instead of die from it.

Running has been going better. I think i found the trick, besides the fact my jog is really a fast run, lol.

I run while centered. What is centered? Is being centered a physical state, as in my keeping my balance, or a mental/spiritual state made up with your values? It seems you hear this term “centered” in everyday dealings… Business, personal, sports.. everyone wants to be centered.

So what is this being centered? People may tell you in their own language to be centered in God, in Love, in Spirit, in Service, in Your Heart, in Beauty, in The Present Moment, or in the space two inches below your navel (which goes by many names in Eastern traditions). Everyone has their own reasons or beliefs. I would be centered in my heart and in the present moment because I am not religious.

The place for being centered is the belly button, see it has a use after birth! Think of the belly button as “that point from which, toward which, and around which everything else moves.” Ok, you all think I’m nuts now…. except the people that have been through HP2.

It’s hard to describe the process or feeling. It’s like meditation, just letting all the noise around you go and focusing on what is happening and important right now. So I let the thoughts of making dinner, doing laundry, the sounds of mom & dad arguing, kids requests and work problems go and I find a place to focus on (the back of my dog, the picture in front of the treadmill) and just breath and run.

I did this while swimming in high school without even thinking about it.  I had 20 laps so being focused was important. I’d get a pace in my head and count the strokes out 1,2,3,4,5,6,7,8,1,2 ect… That’s all I focused on. There was no noise, no parents screaming in the stands, no coach and team on the sideline.  I’d look at the couch every now and then to see if my pace was fast enough, but I knew from practice that it was.  

THIS WAS MY HAPPY PLACE. Away from the teasing and drama of high school and stress from my family.  I believe swimming saved my life in high school.  If it wasn’t there it would have ended for me like it did for Dylan. High school can be a tough and scary place for some people and I cannot lie about it, it was for me.

So I listen to my heavy metal, alternative, whatever you want to call it, music, find my count and start counting. I hear the little person from the app calling out my pace and adjust it as necessary.  I sing along to the songs and just focus on that I’m doing right now, running and it feels good.

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