Guest guest Posted September 23, 2009 Report Share Posted September 23, 2009 Just to say hi to all my brothers and sisters in sarc HI. Been extremely tired lately barely able to get out of bed. Been trying Humira lately 2 shots a week. Doc said I would be extremely exhausted at times, due to Prednisone and Humira usage at the same time. But he wants to be sure Humira will not react negatively to me. So far so good. Heck the hard bumps on my arms are starting to disappear finally after 3 months of not going away. OOO by the do remember if I said this before but Prednisone usage has made me Diabetic and has given me joint issues (ankles, knees and hips mostly). Because of this Doc has diagnosed me with RA tho he says I am developing it right now. This gave him the excuse to use Humira and get me off prednisone he has nothing nice to say about prednisone for long term use. OO well can hadly get my thoughts to continue to line up sp I will end this. To all of you I truly pray and wish you Health and wellness and may all know days that are Pain-Free and joyous. Greg aka Krumdawg North Texas Sarcoidosis Support Meeting Oct 19, 2009 If interested feel free to e-mail and I will send you info on attending. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2009 Report Share Posted November 26, 2009 I am correcting something I typed here! It says I had 62 episodes when tested for sleep apnea..That is wrong...I had 92 episodes an hour.Donna(Iowa)To: Breathe-Support Sent: Thu, November 26, 2009 7:12:21 AMSubject: Update on Me First let me start this by saying Happy Thanksgiving to you all! I hope Each and everyone has a beautiful day! I have so much to be thankful for! I had the CT scans as ordered,the six minute walk,and the lung function,blood workup and the sleep apnea testing. I seen my Pulmodude yesterday and hes what I know so far: For 12 years I have been told I have COPD/asthma THIS IS NOT TRUE. I have restrictive air. (I can get it out,but hard to get it in). I do have Interstitial Lung Disease. My Pulmodude believes he knows what type it is but does not want to guess, he wants me to see a renowned specialist in the field who is also a professor as well as Dr in Iowa City. I do not remember his name LOL but I will let You all know his name next week. My 6 min walk ended with me needing 6 liters of oxygen to walk instead of the 3 liters I am on for rest and being up. That has been changed now to 3 liters when resting and 4 when up. I had the lung function only 44% lung function and only 44% of oxygen getting into blood. (Hope that made sense)... My Pulmodude told me what I have is rare and He only gets maybe 4-5 people a year in his office hence the reason to send me to Iowa City to see this renowned Dr as the Pulmodude put it! The Pulmodude said he did not want me to take any tests that were unnecessary another reason he is sending me to Iowa City. My Pulmodude believes I need a lung biopsy and if so he told me it would be done on my side. He also told me if what they are seeing is scar tissue they cannot reverse that but they could try and give me meds that may keep it from getting worse. If it turns out to be inflammation it could be reversed. The Pulmodude told me these are some BIG DECISIONS! I am very afraid of needing the lung biopsy I have heard most talk about it on here. I do not tolerate anesthesia well, I do not wake up from it too well...and I end up with a severe sore throat and a very very bad cough after things like this. There is a part of me that just does not think my body can really handle any more stress than its already going through. Ohh My sleep apnea test came back as SEVERE APNEA! I had 62 episodes an hour,,,my oxygen dropped by 4%. My lowest oxygen was at 44. So Next week I get fitted for the mask to wear at bed and they will be bleeding in my oxygen to it when I sleep. So this is my update thus far! It makes me tired to think about it! HAHA! Again -Happy Thanksgiving! ! Donna (Iowa) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2010 Report Share Posted March 8, 2010 Dear Darlene,I hope you don't mind my telling you that you will be in my prayers. Dealing with loved ones who have drug and/or alcohol problems can be devastating. Don't lose track of yourself; it's easy to get sucked in to others' pain. My thoughts will be with you and yours.To: Neurosarcoidosis Sent: Mon, March 1, 2010 11:28:57 PMSubject: Re: Update on me Darlene, So much to digest! Please know you are being thought of with warmest regards! Hi everyone. Just wanted to let you know why I have not been around much these last few days. It has been a nightmare here for me. My oldest daughter has been living with us for the past 2 1/2 weeks......( she is divorced and has a drinking problem... she has gone back to her house now. I have been sick again and finally back on my feet........ ... One of my other daughters has moved out of her house and renting a place....... she is in the process of getting a divorce..... . and ..........I have had major computer problems for the last two weeks. I have been working on it off and on and able to get online sometimes for a few minutes and other times not at all. I spent all day yesterday working on it and a couple of hours this morning and I have finally got it fixed, I hope!!!!! Anyway, I just wanted to let you know that I have not forgotten you all and why I have not been answering emails. I have close to 200, so will get throught them as soon as possible. I see Tracie is answering some emails and I hope she is feeling a lot better now......... .. Hugs,DarleneNS Co-Owner/Moderator Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.