Re: A PF Newbie - Little History

[Guest guest]

Tom... I didn't think Rich would be dealing with all my "stuff" either. He is 8 years older and has 4 things wrong with his heart. I presumed I would be taking care of him or out live him.

Life is what happens when we are making other plans! He is so good to me, for me and goes out of his way to make MY life comfortable. I do what I can but I have taken a down-slide recently. I'm so sob!

I'm in the process of determining if sob could be side effects from increased thyroid and/or the pain patch, both started within a short time of each other.

Sounds like you have a nice little family there. I'm happy for you!

MamaSher, age 69. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Re: A PF Newbie - Little History

Actually your remarks just reminded me that my conditions do not just impact me, but my family members as well and that information about them is important too. I am lucky that Cheryl has been able to handle things so well. Dealing with Matt's day to day stuff has always been a lot of work, then with my "stuff".....WOW!When I had the visit to the ER and "resort" (as we call the hospital on the Stills Disease board)when PF was first discovered, my wife called Amy Jo in San , TX and told her what was going on and what she was dealing with, Amy Jo did not have to be asked twice. She just responded, "let me see what flight I can be on to help". Her being there to help with her brother was a God Send for Cheryl. She knows about my Stills Disease and now the PF but is not fully aware of the possible prognosis. Of course, we are still working on that in my mind as well.Matt understands that I do have a "condition" (or a number of them) and that I need to see doctors regularly. He also understands when I go to the hospital. In fact, he sometimes obsesses over it. There are times where he will simply say (sign) "I can not talk about the "H" word. But he is also obsesses about the weather.Tom from PA>> Tom ... I don't remember what I said to you that reminded you it "is not just you"...I hope I didn't sound rude!! I'm pretty outspoken, well "outwritten" maybe. lol.> > We have a son in Phoenixville. A "big wig" with IBM. He is a computer genius.> > I'm glad Matt is able to live at home with you and Cheryl. > The signing reminds me of when my daughter Zoë was in the third grade she volunteered to sign and help the little non-speaking kids who needed tutoring. She got out of school early and went to a special class. I was so proud of her and she did it all on her own.> > Do Matt and Amy Jo know about your disease?> > > > > > > > __________________________________________________________> > Be smarter than spam. See how smart SpamGuard is at giving junk > email the boot with the All-new Yahoo! Mail. Click on Options in > Mail and switch to New Mail today or register for free at > http://mail.yahoo.ca> >>

[Guest guest]

Walt, it's easy to get addicted to this board!

MamaSher, age 69. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

A PF Newbie - Little History

Hi everyone.I just joined your support group and wanted to give a little history. Maybe there is someone else out there with a similar series of events I can hook up with to compare notes.My story starts out back in Sept 2003 with what was dx as an infection of one of my salivary glands. Treated that with antibiotics and probing into the salivary gland duct. From there I started having recurring problems with my feet and ankles. There was a lot of swelling and dx each time with cellulitis of my ankles and feet. Ultrasounds for clots were always negative and antibiotics cleared them up. Sometimes it was one leg, then the other and sometimes both. Assumed this was related to venous vein problems. Finally was admitted after a fairly bad attack and had an infectious disease consult with infectious desease Doc who decided that it did not appear these were infection related and referred me to my current Rheumatologist. After many tests and as symptoms increased and changed, I was DX 5/2005 with an autoimmune condition known as Adult Onset Still's Disease. It is DX from ruling out many other conditions. Symptoms of mine were, polyartcular arthritis, splenomegaly, anemia, high spiking fevers and a salmon colored rash. The fevers are a lot of fun. Mine occurred 2 times a day and rose to 104+. Mine happened at about 6PM and then 3AM and each lasted about 2 hours. This is fairly common although some effected may have only 1 fever per day. The fevers can occur for several months or longer and then go away. Other systemic issues can be inflammation of the liver, pleural effusions, pericarditis and pericardial effusions. Labs are usually screwed up with increase Sed rate and CRP. RA Factor and Lupus ANA are negative. The condition is very related to the Systemic form of Juvenile Rheumatoid Arthritis, only it occurs after 18 years old. For Stills have been treated with Remicade infusion every 6 weeks and 20mg of prednisone a day and 25 mg methotrexate per week. Remicade and Methotrexate had to be on hold when I had a skin cancer removed from my scalp. Got infected and off meds from November 07 until Feb 08. Restarted in Feb then the pulmonary stuff kicked into high gear.Well, anyway.....Got hit with asthma in 11/2006. got this pretty much controlled until a bad case put me in the hospital again March 2008 after just ready to get back into the treament plan. Controlled the March asthma with IV Solumedrol. Then admitted again with O2 sat of 86% in April 08. Chest xrays normal but bilateral Pulmonary infiltrates noted in a CAT Scan. Had a lung biopsy and appeared that my infiltrates were due to the Stills autoimmune disease. Have been in the hospital 2 more times with infections since then. So now I have a diagnosis of Interstitial Lung Disease/Pulmonary Fibrosis to add to my Still's Disease. By the way, last visit to my rheumatologist showed me to have Sjrogren's syndrome as well.Am currently on Imuran 150mg/day, down to 25mg/day of prednisone and a bunch of other junk. Also, Remicade infusion of 10mg/mg every 6 weeks and Procrit prn depending on my hemoglobin level.That is my story and I have seen only 2 others on the Stills site who may be related. My story is probably similar to some of the individuals with PF and RA.Here is the Stills Foundation site, if anyone is interested.http://stillsdiseas e.orgTom

[Guest guest]

Z. It is a small world isn't it?

MamaSher, age 69. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

A PF Newbie - Little History> > > Hi everyone.> > I just joined your support group and wanted to give a little > history. Maybe there is someone else out there with a similar series > of events I can hook up with to compare notes.> > > > > > __________________________________________________________> Be smarter than spam. See how smart SpamGuard is at giving junk email the boot with the All-new Yahoo! Mail. Click on Options in Mail and switch to New Mail today or register for free at http://mail.yahoo.ca>No virus found in this incoming message.

Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.6.1/1607 - Release Date: 8/12/2008 7:19 AM

[Guest guest]

Z. It is a small world isn't it?

MamaSher, age 69. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

A PF Newbie - Little History> > > Hi everyone.> > I just joined your support group and wanted to give a little > history. Maybe there is someone else out there with a similar series > of events I can hook up with to compare notes.> > > > > > __________________________________________________________> Be smarter than spam. See how smart SpamGuard is at giving junk email the boot with the All-new Yahoo! Mail. Click on Options in Mail and switch to New Mail today or register for free at http://mail.yahoo.ca>No virus found in this incoming message.

Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.6.1/1607 - Release Date: 8/12/2008 7:19 AM

[Guest guest]

Z. It is a small world isn't it?

MamaSher, age 69. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

A PF Newbie - Little History> > > Hi everyone.> > I just joined your support group and wanted to give a little > history. Maybe there is someone else out there with a similar series > of events I can hook up with to compare notes.> > > > > > __________________________________________________________> Be smarter than spam. See how smart SpamGuard is at giving junk email the boot with the All-new Yahoo! Mail. Click on Options in Mail and switch to New Mail today or register for free at http://mail.yahoo.ca>No virus found in this incoming message.

Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.6.1/1607 - Release Date: 8/12/2008 7:19 AM