|
Spaces home Lynn's WorldPhotosProfileFriends | ![]() |
|
August 07 Delaware Sarcoidosis Support Annual PicnicDELAWARE SARCOIDOSIS SUPPORT GROUP ANNUAL PICNIC
The next meeting of the Delaware Sarcoidosis Support group will be our annual picnic. Details are below.
The Annual Sarcoidosis Picnic has been scheduled for: Wednesday, August 13th at Anne Glass’s House 902 N. Broom St Wilmington, DE 19806 If the weather is nice we will have an outside barbecue with hotdogs/hamburgers, etc. If you are able, please bring a dish to pass. Please feel free to contact me with any questions – I look forward to seeing you there! Will Will Braunlein Program Specialist American Lung Association of Delaware 1021 Gilpin Ave Wilmington, DE 19806 302.655.7258 Help Line 1-800-LUNG-USA August 01 Physical Therapy DilemmaTalked to my Rheumatologist yesterday and he confirmed that he wanted me not to continue physical therapy at that facility. He stated that he gave clear instructions as to what type of physical therapy that I was to receive. After speaking with the facility, he was very disappointed in the fact that they decided to add to his instructions without consulting him, and also exacerbating the pain without any concern. He went on to state that he would be increasing the dosage of Neurotin (Gabapentin) soon.
Just thought that I would keep you informed.
Take care,
Lynn July 30 Sarcoidosis Walk For A CureJANINE SARCOIDOSIS OUTREACH FOUNDATION (A 501 C3 TAX EXEMPT CHARITABLE ORGINIZATION)
PLEASE SAVE THE DATE AND JOIN US!
SARCOIDOSIS WALK FOR A CURE
OCTOBER 25TH 2008 JEWISH COMMUNITY CENTER 5601 S BRAESWOOD HOUSTON, TX 77096 REGISTRATION BEGINS AT 7:30 AM
IF YOU CANT BE HERE, YOU CAN BE A VIRTUAL WALKER, OR ASK SOMEONE TO WALK FOR YOU.
SPECIAL GUEST: DR SALCEDO MD, AND DR RANDLE, MD. BOTH TREAT MANY SARCOID PATIENTS. OTHER GUEST TO BE ANNOUNCED.
ENTERTAINMENT, GOODY BAGS, JSOF CHEERLEADERS, VENDORS AND SO MUCH MORE.
PELASE JOIN US FOR THIS WORTHWHILE EVENT PROMOTING SARCOIDOSIS AWARENESS, EDUCATION AND RESEARCH INTO A CAUSE AND CURE.
FOR PLEDGES, SPONSORSHIP, OR DONATIONS, PLEASE DONATE ONLINE AT WWW.JSOF.ORG, PAYPAL, ANY WACHOVIA BANK, OR MAIL TO JSOF WALK - P.O. BOX 1008, ALIEF, TX 77411. FOR MORE INFORMATION PLEASE CONTACT US VIA EMAIL OR TELEPHONE 1-800-846-5868.
THE FUNDS RAISED WILL AID IN THE DEVELOPEMENT OF EDUCATIONAL MATERIALS, ADMINISTRATIVE SUPPLIES, WEB-SITE DEVELOPMENT AND THE PRODUCTION OF JSOF SARCOIDOSIS PUBLIC SERVICE ANNOUCEMENTS, AS WELL AS OUR WALK FOR A CURE EXPENSES.
THANKS FOR YOUR SUPPORT Emma Carroll
Executive Director
832-248-6621
(Raise money for janine sarcoidosis outreach foundation just by searching with GoodSearch
www.goodsearch.com - powered by Yahoo! )
Empowering the Community through Sarcoidosis Education and Outreach July 29 1st official day of physical therapyWell, I tried it and so far my pain has not minimalized. I admit that I pushed it a little too. When I am in public I try not to show to much. Am I wrong for doing that? It's just me I guess. I did tell the therapist when it hurt and how much it hurt though, but I finished my exercises. They have me doing aqua therapy which isn't too bad except for wearing a bathing suit in public. I am still not comfortable with my skin. Also I do the stationary bike and arm exercises. I just want to know when do I receive the massage therapy that was prescribed. With the fibromyalgia, I thought that that was supposed to help. Pain or not, I need a massage.
Take care and be blessed... July 21 Trying to spread awarenessHello everyone,
I have started yet another Sarcoidosis Support Forum to help to promote awareness for this dis-ease. Please check it out and join if possible.
It is within a health site entitled "Revolutionaryhealth.com".
Check it out by clicking on this link http://www.revolutionhealth.com/groups/sarcoidosis-support-group July 15 My latest dilemmaAfter a very needed visit with my rheumatologist, he stated that because of my chronic sarcoidosis and fibromyalgia he wanted me to start a new drug called "Lyrica". Everyone knows of this drug because of the advertisement on every television channel. Its main focus is for treatment of fibromyalgia. My doctor told me that this would not cure me, but it would help me with some of the pain. I figure that my body has gotten used to the Vicodin because I rather not take it now because it doesn't help. Well, here is the dilemma. When my husband took my perscription to the pharmacist he was told that Medicare would not cover it. They advised me to take another drug and after it failed, they would then fill the perscription for Lyrica. Have you ever heard of a thing? They know nothing about me but what is on paper. Here is a doctor that has been taking care of me for years and knows that I only want to get better, but they rather risk my life because of money. We truly know that my life means nothing to the government. They rather people like me keel over so that they wouldn't have to spend so much to keep me alive.
What are your thoughts on this? June 23 Talking about Medical Bills
Quote Medical Bills Medical BillsEvery day I am faced with whether or not to go to a scheduled doctors visit or receiving the necessary testing used to treat this dis-ease. My biggest fear is losing my fight because I cannot afford the bills that medicare doesn't cover. I am talking about the 20%. I have recently received the bills for co-pays and such that is left and I truly cannot afford to pay them. I do not qualify for any other assistance because my husband makes "too much money", yet we are barely living paycheck to paycheck. I can't be added to his insurance because of my "pre-existing condition". Right now I am looking at a cupboard that is bare with me making "potluck" meals for my husband and three children. What am I to do? If there is anyone out there that has an answer, please help me. May 18 sinus surgeryWell I am off to have another surgery in the morning. I hope that after this one I will finally regain my sense of smell and taste again. Being without them for approximately 6 years has been difficult. I yearn for the taste of a good steak or the smell of barbecue. Anywho, I will check in and give a follow-up soon.
Take care,
Lynn May 04 Results of eye surgeryWell, I thought that after the eye surgery everything would be alright. Wrong, I was sent next to the otolaryngologist who informed me that I would be having yet another sinus surgery as soon as possible. Because of the CAT Scan, it was noticed that my sinus sarcoid had flared up and caused me to, believe it or not, develop a double ear infection which resulted in the loss of hearing on the left side. Because of this, I will be going back into surgery on May 19th. Also, I was asked by a member in my sarcbuddies group about the lab finding from my eye surgery. It was found to be sarcoid granulomas in both eyelids and also below my right eyelid. The doctor stated that it was a definite possibility that it would return. Well, my upper eyelids remain fine, but the lower right eyelid is again inflammed and swollen . It has only been one month. That just goes to show you how this disease works.
There are new pics of me before and after the surgery in my pics section. Also, please feel free to comment on these blogs.
For more information about this disease please visit www.sarcinfo.com. You are also welcome to visit our sarcbuddies group on msn.
Take care and be healthy. March 20 Talking about Update on the showcase
Quote Update on the showcase Preliminary pre-op testingAfter a week of battling a very bad cold, I was surprised that my PCP cleared me for my upcoming surgery on Tuesday. My vitals were very good, EKG good, breathing ok, and meds checked and updated. I love my PCP. She is very thorough and caring. I will update you in about two weeks. February 26 Sarcoidosis Granulomas of the OrbitsWell, after yet another trip to yet another opthamologist, the verdict is in... I have to have surgery!
I will keep you informed. February 19 When do you say when....lI had a doctor's appointment two weeks ago that didn't go well. My doctor, in the midst of doing an accuppressure treatment, fell asleep.
Also, I am dealing with the enlarged nodules on both of my eyelids and beneath my right eyelid. I tried the Tobradex treatment for two weeks but it didn't work. Now I have to see another Opthomologist to recieve direct steriodal injections in all of the affected areas. Can you say, OUCH!!!!
If you haven't by now, please join the Sarcbuddies support group. It is something that all of us need as well as our families. February 12 A.B.O. & OHS Entertainment Groups Showcase and Networking Event
A.B.O. ENTERTAINMENT GROUP AND OHS ENTERTAINMENT
Proudly Invites you to a music showcase & networking event
WHEN: MARCH 9, 2008 WHERE: THE CRYSTAL CENTER 728 PHILADELPHIA PIKE WILMINGTON, DE 19809 TIME: 12:30 – 3:30 PM FOR MORE INFORMATION, CONTACT LYNN: PHONE (302) 743-3346 EMAIL: ABOENTERTAINMENTGROUP@COMCAST.NET
NETWORKING PARTNERS: BRIDAL CONSULTANTS, BRIDAL BOUTIQUE’S, CATERERS, COSMOTOLOGISTS, EVENT PLANNERS, FLORISTS, PHOTOGRAPHERS, VIDEOGRAPHERS, ETC…
November 30 Sarcoidosis Support GroupsProblems getting treated Trying to obtain an appointment with one of the top Sarcoidosis specialist here on the East Coast is a task. My pulmonologist referred me to a doctor who has a great reputation with treating problematic patients like myself. When I first called several months ago I was told that his first available wouldn't be until June 2008. Knowing that my doctor wanted me to be seen a.s.a.p., I let the scheduler know that I would be calling back in a couple of days after confirming if this was okay with my doctor. My doctor stated that he would call to see if he could get me in sooner. Well it has been some time now and I called to see if an appointment was made. The scheduler told me that this particular doctor was not taking anymore new patients. November 12 Talking about My life with Sarcoidosis
Quote My life with Sarcoidosis Talking about new doctor = + or - results
Quote new doctor = + or - results |
|
|