Lynn's World

Delaware Sarcoidosis Support Annual Picnic

Thu, 07 Aug 2008 19:52:49 GMT

DELAWARE 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 13^th 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

www.lunginfo.org

Physical Therapy Dilemma

Fri, 01 Aug 2008 17:31:55 GMT

Talked 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

Sarcoidosis Walk For A Cure

Wed, 30 Jul 2008 19:45:43 GMT

JANINE 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

www.jsof.org

http://groups.msn.com/nineesarcoidosissupportgroup

(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

1st official day of physical therapy

Tue, 29 Jul 2008 20:03:23 GMT

Well, 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. Anywho, the question my family has for me is will I go as prescribed. I told them that as long as it doesn't cause us anymore financial hardship than we already have with my many medical bills, than I will. Will see>....

Take care and be blessed...

Trying to spread awareness

Tue, 22 Jul 2008 00:30:18 GMT

Hello 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

My latest dilemma

Wed, 16 Jul 2008 02:50:21 GMT

After 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?

Talking about Medical Bills

Mon, 23 Jun 2008 19:02:33 GMT

Quote

Medical Bills

Every 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. I really am at my wits end. Being as though one of the things that this disease feeds off of stress, this situation is not helping me at all.

Medical Bills

Mon, 23 Jun 2008 18:56:07 GMT

Every 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. I really am at my wits end. Being as though one of the things that this disease feeds off of stress, this situation is not helping me at all.

sinus surgery

Sun, 18 May 2008 17:21:06 GMT

Well 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

Results of eye surgery

Sun, 04 May 2008 19:33:21 GMT

Well, 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.

Talking about Update on the showcase

Fri, 21 Mar 2008 01:01:16 GMT

Quote

Update on the showcase

·         Who – ABO Entertainment Group
·         Why – Music Showcase to prospective clientele
·         When - Sunday, March 30, 2008
·         Time - 12pm – 2pm
·         Location Middletown Chamber of Commerce
216 North Broad St.
Middletown, De 19709
Please R.S.V.P. either by email or the phone number listed below.
kmsrenterprises@comcast.net
(302) 743-3346
Looking to cater to prospective clientele:
Event Planners
Wedding Planners
Bridal Consultants (bridal parties are welcome)
Corporate Event Planners

Preliminary pre-op testing

Fri, 21 Mar 2008 00:52:38 GMT

After 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.

Sarcoidosis Granulomas of the Orbits

Tue, 26 Feb 2008 21:31:47 GMT

Well, after yet another trip to yet another opthamologist, the verdict is in... I have to have surgery! The procedure is called a "Bilateral Orbitotomy and Excision of Right Lower Eyelid". The doctor stated that the granulomas have invaded my lacrimal glands and he will do his best to make me look like my old self. I appreciate going to a physician who has knowledge of this dis-ease. It makes me feel more at ease. First, of course, I have to undergo a complete set of preliminary tests. The doctor told me that I was definitely going to have to stay overnight because of my 24hr. Oxygen use and the use of anesthesia.

I will keep you informed.

When do you say when....

Wed, 20 Feb 2008 03:12:55 GMT

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. I knew he was dozing off, but the kicker is that he didn't think I knew it. I go to him for pain therapy to say the least, I was in more pain after leaving than before I got there. I was suppose to go to him tomorrow but of course I cancelled. The thing is, I really like his methologies and he seemed as if he truly took an interest in helping me to beat this dis-ease. This really pissed me off. My family couldn't believe that I didn't raise cain right then and there, but I just wanted to get out of there as soon as possible. One thing that I noticed about most of us who suffer with Sarcoidosis is that we are just trying to find answers and are interested in anyone who lends us that ear. What I mean is that we always get that "the pain is in our head"; or "there is nothing wrong with us". This is why I am in this dillema. I want help, but I don't want to have to deal with someone who can't just honestly say, "I am to tired to give you my best today."

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!!!! Will let you know how that goes..

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.

Update on the showcase

Fri, 15 Feb 2008 00:26:15 GMT

This event has been postponed!!!!

A.B.O. & OHS Entertainment Groups Showcase and Networking Event

Tue, 12 Feb 2008 21:37:50 GMT

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…

Sarcoidosis Support Groups

Fri, 30 Nov 2007 22:54:40 GMT

American Lung Association of Delaware
1021 Gilpin Avenue, Suite 202
Wilmington, DE. 19806
Contact: Tricia Monnig
(302) 655-7258 (800) LUNG-USA (586-4872)

Arthritis Foundation, Delaware Chapter
222 Philadelphia Pike
Wilmington, DE.
(302) 764-8254

Problems getting treated

Fri, 30 Nov 2007 22:43:58 GMT

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. What am I to do now? This has been the story of my life for the past 7 years. Doctor's that I need to see are not in this area and or not receiving new patients.

Talking about My life with Sarcoidosis

Tue, 13 Nov 2007 02:32:17 GMT

Quote

My life with Sarcoidosis
It is now 5:47 am after a long day and night suffering with a lot of body and chest pain. I wish there was a cure for this so that I won't have to deal with these types of days and nights. I really do not like what it does to my children when they see me in pain. I just assure that it is only for a minute but mom will be okay.

I went to the doctor today and she spoke of more patient's coming to her with this disease. I think that it is an epidemic here in this state. It makes you think......

All and all, I remain positive knowing that this is just a test and God will pull me through.

Talking about new doctor = + or - results

Tue, 13 Nov 2007 02:31:34 GMT

Quote

new doctor = + or - results
I have been seeing a new doctor whose methodology is to heal myself from within using his techniques. About now I am up for anything to reduce the ongoing pain of this disease and also the taking of the many perscription drugs. I have never been one for taking medicines. Coming from a holistic approach to life from the beginning up until this diagnosis, I hated the thought that in order to live, I had to rely on medications. So back to this doctor. he uses a pressure point technique in a relaxed environment. Sometimes he implements spinal manipulations and or acupuncture to aid in the release of stress to the muscles and nerves of the body. My initial visit with him was one of finally, someone who approaches health like me. After the first therapeutic treatment and list of supplements i.e. fish oil capsules and others, I felt a sense of cooling thoughout my body. Whether this was my mind tricking me or not, I felt like the treatment worked. He stated that I would likely become very sleepy afterwards and that did happen.

My next visit with him did not achieve the same results. I didn't feel like he helped me in any way. It felt as if the treatment was rushed and also that he only concentrated on one side of my body whereas initial treatment approached my entire body equally. Maybe I am hoping to find some kind of relief from anything other than what I have been dealing with for almost 8 years. To say that I am tired of the repetitious treatments from my regular doctors which all result in my increasing my prednisone intake and or methotrexate is just that, I am tired. There has to be an answer. I want to get back to my regular self. Not being able to work out regularly without pain is causing more harm to my body. The weight gain alone is very hard on my body.

Any thoughts?

Photo Album: KMSR ENTERPRISES ARTISTS PHOTOS

Tue, 22 Jul 2008 00:49:36 GMT

KMSR ENTERPRISES ARTISTS PHOTOS

KMSR Enterprises Artists

Sr.

Sr. & Tim Hudson

Sr. at a gig with Jef Lee Johnson

baby girl singing

Go Miko Go

Kamiko and KJ performing in Philly

KJ on keys

KJ on stage

More Photos...

Photo Album: July 4, 2008 Cookout / Family support system

Fri, 18 Jul 2008 05:54:43 GMT

July 4, 2008 Cookout / Family support system

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More Photos...

Photo Album: living with sarcoidosis

Sun, 04 May 2008 19:13:29 GMT

living with sarcoidosis

Jun 2006

McNeill Family 12-23-03

Me Nov. 2003

Me Jan 2003

me1

I won this award in 2001 / Golden Lifesaver Award

sarcoidosis awareness ribbon

sarcoidosis%20awareness%20ribbon

Lynn's eyes after surgery (2)

Lynn's eyes after surgery (3)

More Photos...

Custom List: Sarcoidosis Database

Mon, 21 Jul 2008 23:54:32 GMT

Sarcoidosis Database

The Marshall Protocol Study Site
More information on an alternative method to treat sarcoidosis.
Sarcoidosis Doctors
Find a Sarcoidosis specialist near you...
National Sarcoidosis Resource Center
Website Administrator: Robert Conroy Professionals or anyone that has an interest in sarcoidosis. Our primary focus is education, available resources, networking and promoting public awareness.
World Sarcoidosis Society
This web site addresses the newly diagnosed patient not only with the clinical knowledge; but the human/personal touch.
MSN Sarcoid Buddies
This Group is especially for those who have SARCOIDOSIS or have a friend or a loved one who has it.
Ninee's Sarcoidosis Support Group
Welcome to Ninee's Sarcoidosis Support Group
Lynn's Sarcoidosis Support Forum
Sarcoidosis patients sharing their stories and questions about this unknown dis-ease. Pronounced this way because we all feel as though we are not at ease because of the pain, unawareness, treatments and misdiagnosis of our symptoms. Venting accepted.

Custom List: Favorite Artist's Web pages

Mon, 23 Jun 2008 19:04:35 GMT

Favorite Artist's Web pages

Jazz Syndicate Radio's DJ Aja
This is one of my favorite DJs myspace page. Listen in to his show every Sat. at 5pm EST to hear the best jazz in the country.
Ka'miko
The official myspace page for Ka'miko.
KJ McNeill's Myspace
The official KJ McNeill myspace page.
Karl McNeill's Myspace
Karl McNeill Sr.s myspace page
KMSR Enterprises Myspace Page
The official KMSR Enterprises myspace page.
KMSR ENTERPRISES & A.B.O. ENTERTAINMENT GROUP
Main Web Page for KMSR Enterprises
KJs Main Web Page
Get the latest news and events for KJ McNeill.

Custom List: Favorite Internet Radio Sites

Mon, 23 Jun 2008 19:03:50 GMT

Favorite Internet Radio Sites

Starpoint Radio
one of the many internet radio stations that Karl's cd is being played on.

Music List: KMSR Enterprises Artists Compilation Cd Volume 1

Mon, 12 Nov 2007 23:56:27 GMT

KMSR Enterprises Artists Compilation Cd Volume 1

Music List: Jazz

Mon, 09 Jul 2007 06:09:53 GMT

Jazz

Karl McNeill Sr: B4 U Know ItKMSR Jazz Demo
Karl McNeill Sr.: Da FaxKMSR Jazz Demo
Leon Jordan Jr: Day Dreamin'Leon Jordan Jr
Karl McNeill Sr.: Down 2 ItKMSR Jazz Demo
Leon Jordan Jr: Groovin LowLeon Jordan Jr
Leon Jordan Jr: Hard HeadedLeon Jordan Jr
Leon Jordan Jr: In And Out of My DreamsLeon Jordan Jr
Leon Jordan Jr: In And Out of My DreamsLeon Jordan Jr
Leon Jordan Jr: It's Like Night and DayLeon Jordan Jr
Leon Jordan Jr: Miles AwayLeon Jordan Jr
Leon Jordan Jr: Mysterious EyesLeon Jordan Jr
Leon Jordan Jr: Sex MachineLeon Jordan Jr
Leon Jordan Jr: Vu Ja DeLeon Jordan Jr

Music List: T M Wright

Mon, 09 Jul 2007 06:05:55 GMT

T M Wright

T M Wright: Be Free
Life Related
Instrumental with guest background vocalist's KJ McNeill, Marquetta Wright, and Ka'miko
T M Wright: Believe Love
Life Related
T M Wright: Double For Your Trouble
Life Related
T M Wright: I Must Tell Jesus
Life Related
Guest vocalist is my daughter Ka'miko and Darnell Miller of DnPT
T M Wright: Imaginary Friends
Life Related
T M Wright: Sacrifice
Life Related
T M Wright: Singing In The Rain
Life Related
T M Wright: The Things I Do (TJs Song)
Life Related
my favorite off of the CD
T M Wright: What Else Can I Do
Life Related
Guest vocalist is my daughter Ka'miko
T M Wright: Who Do You Say I Am
Life Related
T M Wright: You Can't Make Me Doubt Him
Life Related
T M Wright: Your Face
Life Related

Music List: Darnell Davis

Mon, 09 Jul 2007 06:05:37 GMT

Darnell Davis

Darnell Davis and the Remnant: Stop Frontin
Psalms of the Remnant

Music List: KJ McNeill

Mon, 09 Jul 2007 06:05:28 GMT

KJ McNeill