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Thursday, February 27, 2014
More blood work
Today was round 15 of blood tests. Now I can actually watch the entire thing!
At first the needle used to hurt and I had to look way. Then, it stopped hurting but I still had to look away.
Now, it doesn't hurt and I watch the whole thing. Im a pro! Im sure I can just start doing it myself!!
7/23, 7/24, 8/14, 8/24, 8/26, 8/27, 8/28, 9/17, 9/26,
9/27 (er stay), 9/30, 10/3, 10/4, 12/17 & 2/24
Wednesday, February 26, 2014
MRI & MRA today
There is a sad part and a funny part to this experience.
Lets start with Funny!!
When I was checking in, the lady saw on my form that I have Lupus. She asked "when where you bit?"
I chuckled!!!! She looked dumb founded by my chuckle and I then realized she was dead serious. She totally believed the old wives tale of where Lupus got its name! AND to top it off, she said she has a best friend that has Lupus and she said she has watched her deteriorate dramatically. So this sweet lady has clearly been exposed to this auto-immune disease.
- Lupus is Latin for wolf, Erythematosus means redness. In the 18th century, when lupus was just starting to be recognized as a disease, it was thought that it was caused by the bite of a wolf. This may have been because of the distinctive rash characteristic of lupus. (Once full-blown, the round, disk-shaped rashes heal from the inside out, leaving a bite-like imprint.)
As for the test itself, my pain volume level is turned up SUPER HIGH from the lupus and I can't handle too much of anything. Having to lay there on that MRI/MRA board for 1 hour 30 minutes was agonizing. I literally felt like I was whacked on the back of the head by a 2x4 over and over again. I was crying so hard at the end and even trying the "referral pain" of pinching my arm wasn't helping. I threw up right afterwards!!!
The technician was a sweetheart and she was super knowledgeable and understanding!!! thumbs up to desert radiologists!
Tuesday, February 25, 2014
All I ever wanted to be is a mommy
With everything going on, I am having an incredibly difficult time with this baby thing. All of my friends have children and I have so many friends who have recently posted ultra sound photos and I see all these beautiful baby bumps. I am so happy for these women. What a beautiful blessing for all of them!!! This is not a feeling of jealousy at all. It's a feeling of emptiness that I feel. I feel I will never have that once in a lifetime experience of carrying a baby inside of me full term. I want that 9 months of bonding with my child. I want it more than anything in this world. After an ectopic pregnancy & 4 miscarriages in 2012, I still have hope!! :)
Although Lupus and Antiphospholipid Antibody Syndrome make it near impossible to carry a little angel to full term, I'm determined that some day it will happen......some day....
Although Lupus and Antiphospholipid Antibody Syndrome make it near impossible to carry a little angel to full term, I'm determined that some day it will happen......some day....
02/24/2013 Emergency Dental Visit
Starting Late night last Thursday (2/20) I noticed a bit of blood coming from my mouth as I rinsed. Nothing hurt so I let it go. Friday, I went to work. I noticed a horrid smell. Nothing I did took that smell away from my breath!!! It was disgusting! As the weekend progressed, it got worse (how could that smell get worse!?!) Then my gums felt inflamed and bleed so badly I couldn't brush.
9am Monday morning, The dentist opened. I called and explained to her what was happening. She said I needed to get in immediately. She said the Lupus was attacking my gums and we needed to stop it immediately.
My lupus is in a state of flare at the current moment. During a flare it can and will attack organs and tissues including your gums. She said my gums were as inflamed as they could possibly get. When they get this inflamed, its a host for bacteria and that was the smell. She said there is absolutely NO way to prevent this. Lupus does what it wants, when it wants, to whatever part of your body that it wants.
ALSO, it took over 8 shots of Novocaine today for her to work on these 5 teeth. These teeth are all root canals. There are NO roots in these teeth. Therefore, these 9 shots of Novocaine where just so she could touch my gums. She explained that when the gum tissue is at such an extreme level of inflammation, it will not take the Novocain.
I woke up having NO idea that I was going to have to pay out of pocket $600.00 and sit in a dentist chair for 3 hours. This was only for the left side. I still have to do the right side :(
If I did not do this, I stand a very very high chance of losing my teeth. I cant imagine having dentures at age 35 all because I woke up one day with an auto-immune disease.
Today, she lasered my inflamed gums off and cleaned out what she could, then she filled the areas with an injectable antibiotic to stop the bacteria that was growing with the inflammation.
They also placed me on an extremely low dose antibiotic (which freaks me out, I don't believe in antibiotics. I believe they do more harm than good BUT she said it was either my teeth fall out or I do this).
My dentist explained that my lupus has proven itself to be such an aggressive case that I will be required to visit her every 3 months. She explained that at this point, I am looking at $1200.00 ($600 each side)every 3 months because this will continue to occur.
9am Monday morning, The dentist opened. I called and explained to her what was happening. She said I needed to get in immediately. She said the Lupus was attacking my gums and we needed to stop it immediately.
My lupus is in a state of flare at the current moment. During a flare it can and will attack organs and tissues including your gums. She said my gums were as inflamed as they could possibly get. When they get this inflamed, its a host for bacteria and that was the smell. She said there is absolutely NO way to prevent this. Lupus does what it wants, when it wants, to whatever part of your body that it wants.
ALSO, it took over 8 shots of Novocaine today for her to work on these 5 teeth. These teeth are all root canals. There are NO roots in these teeth. Therefore, these 9 shots of Novocaine where just so she could touch my gums. She explained that when the gum tissue is at such an extreme level of inflammation, it will not take the Novocain.
I woke up having NO idea that I was going to have to pay out of pocket $600.00 and sit in a dentist chair for 3 hours. This was only for the left side. I still have to do the right side :(
If I did not do this, I stand a very very high chance of losing my teeth. I cant imagine having dentures at age 35 all because I woke up one day with an auto-immune disease.
Today, she lasered my inflamed gums off and cleaned out what she could, then she filled the areas with an injectable antibiotic to stop the bacteria that was growing with the inflammation.
They also placed me on an extremely low dose antibiotic (which freaks me out, I don't believe in antibiotics. I believe they do more harm than good BUT she said it was either my teeth fall out or I do this).
My dentist explained that my lupus has proven itself to be such an aggressive case that I will be required to visit her every 3 months. She explained that at this point, I am looking at $1200.00 ($600 each side)every 3 months because this will continue to occur.
Monday, February 24, 2014
Dying doesn't scare me..The quality of my life leading up to it does.
Dying doesn't scare me at all. What scares me is the the in between. The quality of my life leading up to it.
When you get diagnosed with Lupus, you have no idea that it is truly as bad and as detailed and intricate as it really is. What is happening to my body is insane. Each day I awake and there is something new.
It seems as though I am honestly living to work just to pay for medical procedures that are absolutely necessary to sustain my life. I am a 34 year old young woman in my prime. I'd love to be able to go and buy myself a bottle of perfume. Or better yet, a new pair of sneakers. Instead, I awake with strange pains, like today. I had to rush to the dentist for an emergency visit which turned out to cost me $600.00 even with my insurance. That's just ONE aspect of Lupus and there are hundreds.
I also had to take a "refusal" at work for a shift that I was called in for. Therefore, I lost the money from that shift and I am now marked with a "refusal." Two more refusals and that is automatic termination.
I wonder how in the hell lupies without health insurance and who are not las vegas cocktail waitresses can afford to provide themselves with medical care which sustains there health. How??
Why in AMERICA can we not use common sense? If someone is diagnosed with an auto-immune disease that has a high mortality rate (such as Lupus) that has NO cure, why do we not have medical coverage provided for us? Why are we forced to pay for these expenses until the day this disease finally kills us?
Not only do I get denied for Life insurance because of the mortality rate associated with this auto-immune disease, but it has also ripped my quality of life from me. It has financially drowned me and it has stolen my identity.
After today's dental visit, I drove home and tears started to flood. Am I going to survive this? How am I going to afford this? How am I going to afford not losing my teeth? How am I going to afford to keep getting all these tests on a regular basis to ensure my organs are not shutting down?? The test every 2 months to make sure the lupus medication is not making me go blind?
I am NOT scared of dying. I am scared to death of the quality of life leading up to that day.
When you get diagnosed with Lupus, you have no idea that it is truly as bad and as detailed and intricate as it really is. What is happening to my body is insane. Each day I awake and there is something new.
It seems as though I am honestly living to work just to pay for medical procedures that are absolutely necessary to sustain my life. I am a 34 year old young woman in my prime. I'd love to be able to go and buy myself a bottle of perfume. Or better yet, a new pair of sneakers. Instead, I awake with strange pains, like today. I had to rush to the dentist for an emergency visit which turned out to cost me $600.00 even with my insurance. That's just ONE aspect of Lupus and there are hundreds.
I also had to take a "refusal" at work for a shift that I was called in for. Therefore, I lost the money from that shift and I am now marked with a "refusal." Two more refusals and that is automatic termination.
I wonder how in the hell lupies without health insurance and who are not las vegas cocktail waitresses can afford to provide themselves with medical care which sustains there health. How??
Why in AMERICA can we not use common sense? If someone is diagnosed with an auto-immune disease that has a high mortality rate (such as Lupus) that has NO cure, why do we not have medical coverage provided for us? Why are we forced to pay for these expenses until the day this disease finally kills us?
Not only do I get denied for Life insurance because of the mortality rate associated with this auto-immune disease, but it has also ripped my quality of life from me. It has financially drowned me and it has stolen my identity.
After today's dental visit, I drove home and tears started to flood. Am I going to survive this? How am I going to afford this? How am I going to afford not losing my teeth? How am I going to afford to keep getting all these tests on a regular basis to ensure my organs are not shutting down?? The test every 2 months to make sure the lupus medication is not making me go blind?
I am NOT scared of dying. I am scared to death of the quality of life leading up to that day.
Tuesday, December 31, 2013
Life, I am the new year
Life, I am the new year.
I am an unspoiled page in your book of time. I am your next chance at the art of living. I am your opportunity to practice what you have learned about life during the last twelve months. All that you sought and didn't find is hidden in me, waiting for you to search it out with more determination. All the good that you tried for and didn't achieve is mine to grant when you have fewer conflicting desires. All that you dreamed but didn't dare to do, all that you hoped but did not will, all the faith that you claimed but did not have - these slumber lightly, waiting to be awakened by the touch of a strong purpose. I am your opportunity to renew your allegiance to Him who said, 'behold, I make all things new.' I am the new year. |
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