August Support Meeting

What an honor for us to welcome Andy from the IMF to be our speaker this month. It is always a delight to see him for he brings with him a wealth of information and always encouragement to all.

Thank you Andy for everything, from all of us at the Pensacola MM Support Group.

We saw a slide presentation on “How to be a Good Patient”. Aimed not as you may think but quiet the opposite. This is referring to being a good patient to yourself.

The greatest and the best thing one can do for ones self is to ask questions, ask questions and ask questions. Stay informed. Keep a record of all your treatments and testing results. The IMF has made this extremely easy by logging on to their website you can download absolutely free” The Patient Manager” I have included the link for your convenience

Download the Myeloma Manager™ Personal Care Assistant™ 

Multiple Myeloma 07/29/08

We had our support group meeting Saturday a week ago and we had some new people show up. A Mom and her 2 girls. Her father in law had recently been dx’d and was wanting information and we were able to provide lots of educational material for her and her family to have in hand, information that is MM specific. That is what our support group is about, being Multiple Myeloma Specific. About providing support by joining together with others with your specific diagnosis, not another type of cancer which may or may not be simular. When you hear you have MM you want to hear from others that have MM.

I have rec’d e-mails from 3 different people in the last month that have recently rec’d a diagnosis of MM in this general area, NW FL. We, as a support group have been able to supply immediately information and support to them all.

We have one of our members currently in Tampa, getting her SCT and she has been keeping up posted on her journey, some of her journey has not been as hoped but the SC collection when they were actually able to do it went very well. The actual SCT is to be on Friday August 1st. Please remember Sylvia during this time. She is an awesome lady, always a smile on her face and full of HOPE.

We have another couple that the husband has MM and just completed his first SCT last month and we are hopeful to hear from them soon.

Our August meeting will bring Andy Lebkuecher from the International Myeloma Foundation  back to see us as we celebrate our 1 year anniversary as a support group. If you are in the area please join us. Our meeting will be on August 16th @ 1:30pm at the West Fl Library on the corner of Gregory and Spring Street in Pensacola, FL.

Wonderful news, October 2008 brings to us a special week, 

Multiple Myeloma Awareness Week 2008
 

October 20-26, 2008
 

Melanoma. Myeloma. To the general public, cancer is cancer. But to those of us for whom myeloma is a reality of life, awareness of this growing cancer is critical if we  are to improve early diagnosis and provision of new treatment options—treatments that increase not only the percentage of patients responding well to treatment, but the length of their survival—and gain support for myeloma research around the world.

Stay tuned for future announcements about this exciting event, as well as specific information about how you can become involved! We at the ECMMSG have some exciting plans for this.

Some donations have begun to come in through my efforts in “Losing Weight Gaining Awareness” for MM. I am still at a loss of only 60 pounds, I have slacked off and must get back on track as I am only half way there to reach my goal of 120 pounds. But we are no where near the half way mark in raising the 120,000 dollars which has been my goal to raise to help with research and awareness for MM. Please help spread the word and let’s get this out there to help with the donations so we can help with the research and funding for awareness to hopefully one day soon hear, we have found a cure!

Blessings to you all!

Debi

June Meeting and Updates

Hello to everyone! We had a great meeting this last Saturday. It was still a small turn out, but I never let attendance get me down. The group is there for those who want to connect with others that have MM and know what they are going through.

It is a time to come together, to discuss treatment plan, to be educated on lastest discoveries in treatment, to see who is going to where and what they think about where they are going. It is a time to talk, a time to listen, a time just to be in the company of others, others who really understand what you are going through. No questions have to asked, no comments have to be made, there is no awkwardness, because everyone present knows, everyone present understands. No words are needed.

I am still actively “Losing Weight Gaining Awareness” for MM, doing much better in the losing weight department as I have finally hit the 60 pounds mark. Can’t say I have done as well in the gaining awareness department as my attempts to raise $120,000 for research and awareness for MM are not doing so well. But I will not give up. I may actually reach my goal of losing 120 pounds before receiving much in the way of funds for research.

Research is so vital for this cancer, it is still considered to be a terminal diagnosis. While recent discoveries have made life more bareable and extended a bit, it is ultimately still a terminal cancer. A death sentence if you will. Wouldn’t it be a great thing to know we have wiped this cancer out in our life time. I believe we can with more research we can find a cure. But research doesn’t come without a price tag unfortunately. Everything is expensive. So is research.

Please help me get awareness out there to everyone. The more awareness, the more agressive we can get in research funding.  As I have mentioned in earlier postings, I am losing weight, gaining awareness for multiple myeloma. I am asking you all to sponsor me in my endeavors to lose 120 pounds by pledging to give $1.00 per pound lost. All the money goes for research. ALL OF IT. I get nothing! Oh wait a minute, I get the joy and satifaction of knowing I lost 120 pounds and with every dollar I put in and every dolloar you put in we have the joy and satisfaction of knowing we are making a difference in the world. And who knows, it may be one of those dollars that made the final difference in being able to say YES WE HAVE A CURE!  Wouldn’t that be wonderful to know you made that difference.

At one point this was a cancer that was considered an old persons cancer, but not anymore, younger and younger people are hearing, “You have Multiple Myeloma”!

Won’t you consider being a vital part in helping to gain awareness for MM and help to find a cure with me.

You can go directly to my donate site by clicking the link here: https://tinyurl.com/22yvxt
To learn more about MM you can go to: www.myeloma.org  or www.multiplemyeloma.org

We are looking forward to our August meeting when we have  Andy Lebkuecher from “The International Myeloma Foundation” with us and then in October we have Dr Rudi Hrncic from “The Binding Site” coming all the way from California to meet with us.

Our July meeting will be July 19th at the West Florida Public Library on the corners of Spring St and Greogry St. We meet at 1:30pm and finish at 3:00pm. If you are in the area, please feel free top stop by.

Until next time ~

May 17, 2008 Emerald Coast Multiple Myeloma Support Group

Hello out there~

We picked back up with our meeting today. Attendance was low as one of our members is in Little Rock getting his second SCT so that is 2 missing, and another couple was unable to attend due to an illness in their family and had to go out of state.

It is my hope that everyone will be present for the June 21st, meeting.

Just in case any readers are in the Pensacola area I will list the dates for the remainder of the year for you if you would like to stop in for a visit. The location is The West Florida Public Library ~ 200 W Gregory St. Pensacola. It is on the coner of Spring and Gregory Streets.

June 21st, @ 1:30pm

July 19th, @ 1:30pm

August 16th, @ !:30pm Guest Speaker Andy Lebkuecher from the IMF will be here to help us celebrate our 1 year anniversary.

September 20th, @ 1:30pm We have someone else lead the group this day as I am expecting to be in Africa. Perhaps one of you!

October 18th, @ !:30pm  Tentative Guest Speaker ~Dr Hrncic of “The Binding Site” (Free Light Chain Testing )

November 15th, @ 1:30pm

Dec 20th, @ 1:30 pm

Now for a drum roll please……… in regards to “Losing Weight Gaining Awareness Campaign” I have now lost 58 pounds! WOO HOO!  Now at this point I am not sure how much has been pledged, but I am hoping all who read will donate just One Dollar per pound to the IMF for research and awarenesss. I have given you my direct link but will give it again, https://tinyurl.com/22yvxt
that will take you directly to my place inside the IMF website.

Blessings to you all. We are excited about the things that are happening in research. Let us keep research going for us all so one day we will here, we have found a cure for Multiple Myeloma!

Until next time, take care of you!

Multiple Myeloma Patient Family Seminar Dateline Atlanta 2008

Well the IMF came in with a whirlwind, literally! I was honored to attend the March 2008 Patient Family Seminar in Atlanta, GA .

It was incredible! If none of you have been to a Patient Family Seminar you need to seek out the next one closest to you and do what you can to get there! It is a wealth of information and the people you network with have “been there, done that” and most even have the Teeshirt, !

Friday evening after the seminar was over as we were heading home my nephew called and asked if we were still in Atlanta and said to be careful as the weather was really bad, like tornado bad! We had an amazing light show all the way home. Lightening all around us all the home. It was kinda cool, that is until we got home and I rec’d another called from my nephew asking if we were still up there because they had to evacuate the Westin Peachtree Plaza due to the tornado and there was damage at the Ga Dome and other buildings. We figured out the timing of all the activity and we had just passed the areas by minutes after the main activity. Of course we were on the interstate, but it is wonderful how bliss ignorance is. We had no clue what was going on only streets away.

It will take a long time for Atlanta to fully recover. The Equity building which is kinda a landmark building lost almost all their windows.

Hopefully next week I can submit some pictures and some information from the Seminar .

Blessings to you all! I appreciate all who help to bring awareness to Mulitple Myeloma. Let us not forget to do our part some we can hopefully hear they have found a cure.

Heart Month

Hello out there! Guess you probably thought I forgot about posting!

The past month and a half has been quite a blur. I departed for the DC area the day after Christmas, spent 3 days in Colony Williamsburg WV, New Years in VA and then 4 days in DC. Did all the touristy things. Our Nation’s Capitol is amazing. For this 50 year old to have the privilege to do all that was a dream I have had almost all my life. The WWII monument was breath-taking, I cried. To walk in the steps that our country’s founding fathers walked was to say the least, most humbling. For me anyway! Then back to work for a little bit as I was laid off. Then I was in an accident and totaled my car, by insurance standards, and this brings me pretty current.

Our group has taken a break and hopefully we will get back on track meeting the 3rd Saturday of the month @ 1:30 pm @ the Pensacola, West Fla Public Library @ Gregory and Spring St.  I am still looking for another place for us, but this will do us well until then.

I pray the holidays were not to hard on any of you and we can step in to the new year with great expectancy.

I am proud to announce that I have now lost 46 pounds and hoping to get that in high gear again. The money raised is so low I am embarrassed to mention the amount. I have to get busy putting this out there.

Losing Weight Gaining Awareness for MM, please help me in my endeavors to raise $120,000. for awareness and research for MM. If we can get just 1000 people to pledge $1.00 per pound I am losing that would do it. As I mentioned I am currently at 46 pounds lost. I have 74 more pounds to go until I reach my goal.

Help me get the word out. All the money will go to research and raising awareness, nothing goes to me. Go to www.myeloma.org  or  https://tinyurl.com/22yvxt the second one takes you directly to my event.

Blessings to you all and I will do my best to do better in writing and keeping you posted.
Debi

December 19, 2007

I know that the holidays are just around the corner and for many of you, especially the patients, it means a time of using extra energy that is at times not so easily found.

So I have prepared so suggestions for you to help you through the Christmas season.

#1 Rest when ever you can, take an afternoon cat nap, they are especially nice if you have a good book to curl up with. As for me, book in hand, sleep soon to follow ;-)!

#2 Rest where ever you can, whether it is in the car or in your favorite recliner or at Aunt Sally’s in “her” favorite recliner or rocker, Rest! This is the best thing you can do for yourself and for those around you!

# 3 Enjoy those around you and let them enjoy you. This is easily done when you follow #1 and #2.

#4 Make sure to eat at regular intervals, do not go for extended periods of time without consuming food, ya know like saving up for the big dinner, this will only mess up your blood sugar and make you feel lousy in the end.

#5 Drink PLENTY of WATER!!! Drink plenty of water!!! Keep yourself hydrated, any loss in your fluid intake can cause you to have muscle spams and I am sure most of you already have enough of those, you don’t need to increase these by not having good fluid intake, that means water!

and I will end with #6

#6 REST REST REST!!!!

Blessings~ 

Losing Weight Gaining Awareness Brochure

Well I have tried to attach the brochure and am unable to because of Word Press  restrictions, it is a Publisher document so I am not sure what the problem is. I will see if I can copy and paste it so hopefully that will work alright. Can’t seem to copy and paste since it is in Publisher. So if you want to see it let me know and I will forward it to your email. There has to be a better way.

Blessings!

December 12, 2007

Hello everyone, sorry it has been so long since last post…

The good news is….ta ta ta ta ta ta I am down 40 pounds and 35.5 inches. WooHoo, Praise God!!!!!

That is a lot of taters!!

 I have my brochure ready to send out and will attached it on a post I will send out tomorrow. Please feel free to print off and pass around to whomever and where-ever you can.

We are all a team player here so we all need to get busy and move ahead with this.

I have sent an e-mail to the IMF contact to request an addition to be made to my site there showing the contributions thus far. Hopefully they can add like the thermometer thingy and that will begin rising. I am a third of the way to my goal, oh my goodness, a third of the way, WOW! How exciting. Now we just need to get the donations coming in.

I thought about planing a Poker Tournament, got the idea from Tackling Myeloma Foundation by Eli Alexander check out their site. www.tacklemyelomafoundation.com

Multiple Myeloma is on the rise not on the decline. So it is imperative that we get the information out there.

Blessings to you all,

Until tomorrow when I will send out the brochure.

 Debi

Losing Weight Gaining Awareness 11/23/07 Post

Another pound and a half down but an amazing 30.5 inches lost. I am so thankful to the “Physician Weight Loss Center “here in Pensacola for helping with my journey, they have all been so supportive and encouraging. And so have all of you!

I still have a long way to go but we really need to get some awareness going on as well, please go to this link and click on donate to help with the research to make this all work together:http://tinyurl.com/22yvxt .

Blessings to you all.