Friday, March 28, 2014
Monday, March 24, 2014
The sickness you feel in your gut and in the sadness you feel in your heart when your on your lunch break, you sign into your "private" Lupus support group and your read a young beautiful girl in her 20's saying she can NOT take it any more. She can't handle the pain and she thinks how easy life would be if she just took her life. This is something I read on Lupus groups too often. The pain this damn disease causes is unreal. It's demonic is my opinion and how in the hell can we as a society sit back and NOT have a cure for this? Without warning this disease will kill us Lupies. I could be at work tonight and die tomorrow. Thats the reality. So many of these Lupies live in isolation when in reality, they need to be out enjoying the breaths that God is giving them b/c those breaths may be their last! There is beauty in this world BUT only with education and awareness is this going to happen. Unfortunately, people that have this disease are WAY to embarrassed to talk about. Shoot, I am single and I have no kids. I have no one to embarrass. LOL. I am ready to scream from the mountain tops at our senators and our government that we need funding, we need research! Furthermore, how in the hell can we educate ourselves and families on a disease that even doctors and scientists cant even explain what causes it ANd that has NO cure AND that is fatal?? What kind of life is this to live?? If you let it, it will, without a doubt swallow you whole!!
Sunday, March 23, 2014
Compete for Ms. Nevada United States 2014
http://www.gofundme.com/7r7ibk
Well, there is one week to come up with the funds to compete for Ms. Nevada United States 2014. I have been so sick that I cant even get up to brush my teeth let alone get out and raise the funds to compete for such an amazing gift as this title. I say gift b/c this would be the platform that Lupus needs. I also say gift b/c it would give me a reason to fight super hard to get out of bed every single day. It would give me a fight in my spirit that right now I have a little of. It's there. The fight is there, but I need something to ignite my fire, a passion to keep me going and I feel that being able to have a platform to fight for awareness of such a horrible disease which has now plagued my life, it would bring meaning to my life.
You know, some people who have this disease have a husband or have children or heck, they even have their extended family around them. That is enough to want to get out of bed each day. Maybe enough to at least get you to make it down the stairs. There are weeks at a time I cant even get down the stairs.
Having a platform to shout out and say "Hey, we need our congressmen to listen and we need more research and funding for this disease. We need more education and not just for the public but for these doctors who have degraded not only me but other Lupus warriors."
Last week, it hit me how important it would be to my health to compete. The endorphins it would give me.
And, its not just about "me." I can relate to others. I have the empathy and the understanding for many things, not just Lupus. Lupus is one of many auto-immune diseases. There are too many people who are suffering in silence and that is not the way it should be!! We need to change that!!
Well, there is one week to come up with the funds to compete for Ms. Nevada United States 2014. I have been so sick that I cant even get up to brush my teeth let alone get out and raise the funds to compete for such an amazing gift as this title. I say gift b/c this would be the platform that Lupus needs. I also say gift b/c it would give me a reason to fight super hard to get out of bed every single day. It would give me a fight in my spirit that right now I have a little of. It's there. The fight is there, but I need something to ignite my fire, a passion to keep me going and I feel that being able to have a platform to fight for awareness of such a horrible disease which has now plagued my life, it would bring meaning to my life.
You know, some people who have this disease have a husband or have children or heck, they even have their extended family around them. That is enough to want to get out of bed each day. Maybe enough to at least get you to make it down the stairs. There are weeks at a time I cant even get down the stairs.
Having a platform to shout out and say "Hey, we need our congressmen to listen and we need more research and funding for this disease. We need more education and not just for the public but for these doctors who have degraded not only me but other Lupus warriors."
Last week, it hit me how important it would be to my health to compete. The endorphins it would give me.
And, its not just about "me." I can relate to others. I have the empathy and the understanding for many things, not just Lupus. Lupus is one of many auto-immune diseases. There are too many people who are suffering in silence and that is not the way it should be!! We need to change that!!
A video I made about a month in the life of my Lupus Journey
And so my journey begins.... its off to a rough start but I still smile and I will beat this!
Saturday, March 22, 2014
Video -- "This is Lupus"
Video produced by the Lupus Foundation of America, Inc.. Watching this Father, Joe McMullin, share his story about his daughter Kassie makes me cry every time I watch this video. This disease still makes NO sense to me and we need the United States government to step up here!
Thank you to Dr. Susan Manzi, M.D. for pointing out exactly how all of us Lupies think and feel..........
We have to change this! We have to talk about it. We absolutely have to Petition our congressmen. And we need our federal government to say that this disease has to get just as much attention as other devastating and potentially fatal diseases.
We need more research dollars, more physicians and more scientists thinking about Lupus and working on the cure. NOW.
Thank you to Dr. Susan Manzi, M.D. for pointing out exactly how all of us Lupies think and feel..........
- Lupus causes exceedingly high rates of heart attack and stroke.
- We fear disability
- We fear losing our jobs
- We fear the ability to have a child.
- If we do have that blessing, can we be an effective parent? The disease makes us so sick, we are unreliable.
- We fear being a good spouse because Lupus is such a highly unpredictable disease.
- Every day, we fear Death............
We have to change this! We have to talk about it. We absolutely have to Petition our congressmen. And we need our federal government to say that this disease has to get just as much attention as other devastating and potentially fatal diseases.
We need more research dollars, more physicians and more scientists thinking about Lupus and working on the cure. NOW.
Thursday, March 20, 2014
Sunday, March 16, 2014
ER ..... again...
Blood work, blood work & more blood work..........
And that's my life, constantly hooked up to machines..........
And what the ER doc told me tonight was that my "D-Dimer" was super high AND there was some scaring in the bsae of my lungs. They kept me tonight for observation just in case there were any complications.
What an experience tonight was. At work, I had the most excruciating sharp shooting chest pain. On the way home, I felt my right hand cramp up super tight. I could NOT move my fingers at all. I started to feel very nauseous. This indeed prompted my stop at the ER. I did not have any desire to go but I did. Trust me, I'd much rather sleep in my comfy, king size bed with my cuddly puppers. Not a stale, cold hospital on St. Patrick's weekend with a hospital FULL of people who have alcohol poisoning.
Anyhow, I blacked out when they took my blood. That's a first! I get my blood taken at least once a week. Sometimes it will be 16 tubes! I've never fainted or blacked out and that's even after having to fast. I woke up and I had slurred speech, both hands were purple and I couldn't move my fingers b/c they were in spasm.
The hospital staff was once again amazing with me and took great care of me. I couldn't ask for anything better than what Spring Valley gives its patients!
The doctor felt as though there was a blood clot that most likely dissolved on its own. She couldn't be too sure she said. The labs were off BUT after doing CT scans with iodine, she couldn't see anything.
This is the life of very active Lupus
Another run through the Iodine IV CT scan machine, this time to check my heart
At least I get to look up & see the cute dolphins on the ceiling again
And what the ER doc told me tonight was that my "D-Dimer" was super high AND there was some scaring in the bsae of my lungs. They kept me tonight for observation just in case there were any complications.
What an experience tonight was. At work, I had the most excruciating sharp shooting chest pain. On the way home, I felt my right hand cramp up super tight. I could NOT move my fingers at all. I started to feel very nauseous. This indeed prompted my stop at the ER. I did not have any desire to go but I did. Trust me, I'd much rather sleep in my comfy, king size bed with my cuddly puppers. Not a stale, cold hospital on St. Patrick's weekend with a hospital FULL of people who have alcohol poisoning.
Anyhow, I blacked out when they took my blood. That's a first! I get my blood taken at least once a week. Sometimes it will be 16 tubes! I've never fainted or blacked out and that's even after having to fast. I woke up and I had slurred speech, both hands were purple and I couldn't move my fingers b/c they were in spasm.
The hospital staff was once again amazing with me and took great care of me. I couldn't ask for anything better than what Spring Valley gives its patients!
The doctor felt as though there was a blood clot that most likely dissolved on its own. She couldn't be too sure she said. The labs were off BUT after doing CT scans with iodine, she couldn't see anything.
This is the life of very active Lupus
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