Wednesday, July 31, 2013
Fundraising Update
Update: I have enough in the bank to get me to the second procedure in L.A. in November. I am about $1250 short for the third and last one to be done sometime in February or March.
Feeling Good
Today is day 10 since I got the procedure done.
My stomach where the stem cells were harvested is faded to a yellow bruise. I am supposed to wear the compression garment for a few more weeks. The injection site is healing well and the swelling has subsided.
Last night it hurt to lay sideways as my thighs would compress the area and I had shooting pains. I need to ice more :/
I started using Dr. Newman's cream called Luminesce for the itching and it seems to work wonders.
I have my next appointment scheduled for November 14th. I have enough in the bank now for the entirety (travel, rental car, plasma) for that trip ;).
I am still looking for employment as my teaching job ends Friday. Say an extra prayer.
Matt is on FMLA to help around the house and with kids. They are keeping busy and having fun.
I cannot believe it is almost time for the kids to start school!
My stomach where the stem cells were harvested is faded to a yellow bruise. I am supposed to wear the compression garment for a few more weeks. The injection site is healing well and the swelling has subsided.
Last night it hurt to lay sideways as my thighs would compress the area and I had shooting pains. I need to ice more :/
I started using Dr. Newman's cream called Luminesce for the itching and it seems to work wonders.
I have my next appointment scheduled for November 14th. I have enough in the bank now for the entirety (travel, rental car, plasma) for that trip ;).
I am still looking for employment as my teaching job ends Friday. Say an extra prayer.
Matt is on FMLA to help around the house and with kids. They are keeping busy and having fun.
I cannot believe it is almost time for the kids to start school!
Thursday, July 25, 2013
Emotional Roller Coaster
The day of my last appointment (Wednesday) I was in complete despair. When I originally got the price quote from Dr. Newman (keep in mind he had not seen me yet) I was told 7k plus additional costs for PRP (plasma). I thought that meant that in the future, after the 3 treatments, it would be $750 to maintain. I was wrong.
I have already spent money on blood work ($500), air fare, rental car, skirts/yoga pants to wear after the surgery and the first initial treatment (7k). I have about $1400 left and have to once again pay for blood work (as the tests are only good according to law for 6 months) two more times of travel, rental car, hotel and plasma at $750 each time. Needless to say, we have fallen short-very short.
I was lying on the exam table in complete despair. I was just laid off from work, fundraising for the last 8 months was exhausting and took a toll, and without all three treatments, all of this has been for nothing. I could not help but cry. All my hopes were vanished in that one moment.
I could not help but look around at people in the streets, in cars and in restaurants and envy them for their normality. I could not believe that this is my life and my challenge.
The worst part, remission has been seen to last 9 months to 3 years at which point, this will all have to be done again. I need to get a job just to stay somewhat out of pain.
Today is day 4. I cannot walk without my compression garment as I have burning and a heavy weight with pain from where he harvested the stem cells. The area of the injections is swollen, itchy and in pain. I am trying to take it easy and stay hopeful. I am not seeing any results so far, but realize that could take six weeks.
My next appointment is scheduled for November 14th. Hopefully I will have enough money raised or get an awesome job offer before then to enable me to go. I have to keep remembering that I am paving the way to help Dr. Newman gather enough proof and research to get grants to hopefully one day enable my daughters to have a cure or at least their insurance pay for the treatment for this horrible disease. ~S
I have already spent money on blood work ($500), air fare, rental car, skirts/yoga pants to wear after the surgery and the first initial treatment (7k). I have about $1400 left and have to once again pay for blood work (as the tests are only good according to law for 6 months) two more times of travel, rental car, hotel and plasma at $750 each time. Needless to say, we have fallen short-very short.
I was lying on the exam table in complete despair. I was just laid off from work, fundraising for the last 8 months was exhausting and took a toll, and without all three treatments, all of this has been for nothing. I could not help but cry. All my hopes were vanished in that one moment.
I could not help but look around at people in the streets, in cars and in restaurants and envy them for their normality. I could not believe that this is my life and my challenge.
The worst part, remission has been seen to last 9 months to 3 years at which point, this will all have to be done again. I need to get a job just to stay somewhat out of pain.
Today is day 4. I cannot walk without my compression garment as I have burning and a heavy weight with pain from where he harvested the stem cells. The area of the injections is swollen, itchy and in pain. I am trying to take it easy and stay hopeful. I am not seeing any results so far, but realize that could take six weeks.
My next appointment is scheduled for November 14th. Hopefully I will have enough money raised or get an awesome job offer before then to enable me to go. I have to keep remembering that I am paving the way to help Dr. Newman gather enough proof and research to get grants to hopefully one day enable my daughters to have a cure or at least their insurance pay for the treatment for this horrible disease. ~S
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| Stomach after harvesting stem cells. Very painful and swollen. |
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| Inflammation treatment for the body. You just stick your hand in the machine. |
Tuesday, July 23, 2013
Stem Cell/Plasma Procedure
I flew to L.A. on Sunday with Matt. The flight was miserable. Virgin Air is horrible. It was hot in the plain and the seats are very cramped. It was hands down the worst flight EVER. I am not looking forward to the trip home with incisions and a swollen body. If we had more money I would upgrade to first class.
I wanted one day with my 3-year-old niece Isabella (I have never met her) before the procedure. We went and walked on the pier. I was miserable the whole time as walking always irritates me when I am in the middle of a flair and it is humid. I kept thinking that hopefully after the procedure I will be able to walk without being reminded of my disease. Later we had a wonderful evening with my cousin Destry (that I have not seen in years). Did I mention my SIL is an excellent cook? It was nice to sit outside, eat wonderful food and visit.
Monday was the procedure. My appointment was at 9 and even though it was less than 20 miles away, it took us 1.5 hours. Got to love L.A. traffic. First they gave me a pill that goes under my tongue to relax me (nothing that gets you sleepy, just calms the nerves), then they took my plasma, gave me a local shot and did the lipo to harvest the stem cells on my stomach (no, they do not take enough to make a difference-darn). The lipo was uncomfortable and hurt when he jammed the rod too far or grabbed my skin in his fingers. It was a horrible burning feeling. Trust me, I voiced my complaints. After, he took the plasma and stem cells and injected them into the affected area. Each one felt like a bee sting or worse. It was awful. I was there from 9-3 and grumpy when we left. It hurt to sit and I was very swollen. Because of the stem cells needing to be top notch to do their job, all you can take it an herbal anti-inflammatory and Tylenol.
Tuesday I was anxious to shower as I leaked blood, fat and fluids from both areas (lipo and where the stem cells were injected). I am bruised in both places and it hurts to stand. It actually reminds me of a c-section on some levels.
I go in tomorrow for an ultrasound appointment and then fly back. I am supposed to go back every three months for two or three more procedures. So what does the procedure do?
After examining me, he told me I have fusing (meaning parts of my body are no longer there or losing their structure, layers of built up scar tissue and discolored skin). He said I was a tough cookie for lasting this long and it made me feel good that someone actually had compassion and understood on some sort of level.
Our hopes are that after the 3 procedures I will go into remission. Meaning that the fissures, fusing, white patches, loss of sensation, constant pain, itching, tingling and stinging will be reduced by 80%. The drawback, when it comes back and I am out of remission (this could be anywhere from 1-3 years) I will have to repeat the procedure and cost. Ugh.
It is his hope that he will gather enough information, research and proof to get grants so that women like me can be treated and not suffer or eat the whole cost. Pray this happens fast. I cannot afford 10k per year.
I am hoping, praying and wishing for a long remission. ~S
I wanted one day with my 3-year-old niece Isabella (I have never met her) before the procedure. We went and walked on the pier. I was miserable the whole time as walking always irritates me when I am in the middle of a flair and it is humid. I kept thinking that hopefully after the procedure I will be able to walk without being reminded of my disease. Later we had a wonderful evening with my cousin Destry (that I have not seen in years). Did I mention my SIL is an excellent cook? It was nice to sit outside, eat wonderful food and visit.
Monday was the procedure. My appointment was at 9 and even though it was less than 20 miles away, it took us 1.5 hours. Got to love L.A. traffic. First they gave me a pill that goes under my tongue to relax me (nothing that gets you sleepy, just calms the nerves), then they took my plasma, gave me a local shot and did the lipo to harvest the stem cells on my stomach (no, they do not take enough to make a difference-darn). The lipo was uncomfortable and hurt when he jammed the rod too far or grabbed my skin in his fingers. It was a horrible burning feeling. Trust me, I voiced my complaints. After, he took the plasma and stem cells and injected them into the affected area. Each one felt like a bee sting or worse. It was awful. I was there from 9-3 and grumpy when we left. It hurt to sit and I was very swollen. Because of the stem cells needing to be top notch to do their job, all you can take it an herbal anti-inflammatory and Tylenol.
Tuesday I was anxious to shower as I leaked blood, fat and fluids from both areas (lipo and where the stem cells were injected). I am bruised in both places and it hurts to stand. It actually reminds me of a c-section on some levels.
I go in tomorrow for an ultrasound appointment and then fly back. I am supposed to go back every three months for two or three more procedures. So what does the procedure do?
After examining me, he told me I have fusing (meaning parts of my body are no longer there or losing their structure, layers of built up scar tissue and discolored skin). He said I was a tough cookie for lasting this long and it made me feel good that someone actually had compassion and understood on some sort of level.
Our hopes are that after the 3 procedures I will go into remission. Meaning that the fissures, fusing, white patches, loss of sensation, constant pain, itching, tingling and stinging will be reduced by 80%. The drawback, when it comes back and I am out of remission (this could be anywhere from 1-3 years) I will have to repeat the procedure and cost. Ugh.
It is his hope that he will gather enough information, research and proof to get grants so that women like me can be treated and not suffer or eat the whole cost. Pray this happens fast. I cannot afford 10k per year.
I am hoping, praying and wishing for a long remission. ~S
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