Sarcoidosis Support Groups

  • 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

     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

     

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    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.

    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?

    Talking about Sarcoidosis Information Sites

     

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    Sarcoidosis Information Sites                                                     

    http://www.sarcinfo.com

     
     
     
    http://www.rs.4030.com/  – Chronic Town
     
    SarcoidBuddies@groups.msn.com – Sarcoid Buddies –