I had 2 pretty good weeks back to back - a record for me, the most "good days" in a row I've had since getting sick. I even got my hair cut - my first haircut in 3 years! It's hard to fathom that I've felt too sick to even get a haircut for 3 years... but its the truth. I really like it short, it's so much cooler and looks so much better. I've also been swimming a lot and LOST weight (16 pounds) for the first time in 3 years, all really good stuff! 
I saw my Pulmonoligist on Monday and told him I was swimming without any oxygen and he was very concerned. He finally agreed to let me keep swimming, but only for a max of 30 minutes, then I have to put my O2 on 4 liters when I get out of the pool. We took a walk down the hall with no O2 and my sat went to mid-80s' within 30 seconds. I could tell he really isn't comfortable with me swimming and being off O2, but I was about to cry and I think he knew it would just break me if he cut out my swimming out altogether. It was like he read my mind. H looked at me and said "I'm not going to take your lifeline away." Wow, I'm sooo grateful for this doctor. I must have been through a dozen Pulmonologists before finally finding him. He is the first one that really "gets it". He treats me as a whole person, not just as a pair of lungs. He seems truely interested in my case and in the devistating impact that Systemic Sarcoid can have on a person's life. Unfortunately, the damage to my lungs is permanent, it's not like they are going to 'heal', or can be 'fixed' - and I've never even smoked! That means I'll be on O2 until or unless I have a lung transplant at some point. Right now my Sarcoid is stage 3, and hopefully it won't go to stage 4, so I'm looking at O2 on a permanent basis and hoping we don't get to the transplant stage. There is a lot of buzz on the Sarc sites these days about Beryllium Poisioning. It seems that a LOT of people with Sarcoid test positive for Beryllium Poisioning. I asked my doctor to test me and he ordered the blood test that shows whether or not you have been exposed to Beryllium. He said if that is positive, then you have to have a Bronchoscopy to definitavely diagnose toxic levels. He said if I do test positive, my treatment and prognosis won't change, but at least I would know. He said if he were me, he'd want to know too. Now, this is the amazing part. I took the orders to the EMORY lab, and they didn't know how to do the test! They sent me home with the orders in hand and said my Doctor would be in touch with me to tell me where to go get it done!!! Can you imagine - at EMORY!!
Next, on Tuesday I went to my Diabetes Dr. My A1C is down to 7 (Yea!!) and my cholestorol is back in the normal range. Liver and Kidney functions are good too. But then I showed him my foot. It looks "funny" and hurts REALLY BAD to stand or walk. He said it looked like Cellulitis and sent me directly to an Infectious Disease Dr. (Dr. Dailey). Dr. Dailey thinks the infection is not deep and did blood work and sent me to the hospital for x-rays just to make sure I didn't have another fracture (My bones are so compromised at this point that they fracture very easily). I went back today and the x-ray is normal (another Yea!), but the pain is still very bad. He explained what I should watch for, symptoms that would indicate the infection has gone deep into my foot, and put me on a topical cream for 10 days. So, of course I can't get in the pool again until it is all healed up (sounds like a broken record), and I probably can't get my Remicade infusion next week (another broken record). He said it could take several weeks to completely heal. I have a call in to Dr. Butler to find out if I can have Remicade next week.
I suspect I may have got the infection from using the fins at the Y, so I'm going to buy myself a pair of my own before I go back to the pool. I'm going to get some of that pink liquid soap they make you wash with before surgery. Then I'm going to wash my feet with it every time I go to the Y after I swim.... Maybe with those changes I'll be able to avoid a repeat of this infection. I'm also going to get a new gym bag that rolls, because right now I have to have some one go with me to carry it. I can carry it into the Y (just barely), but after I swim, I can't carry it back out, unless I leave the Oxygen tank out of the bag because I'm too weak.
Yesterday was pretty tough, it seems just when I'm starting to show improvements, there are setbacks. Plus I ran out of oxygen while we were running between doctors offices, pharmacy, and the hospital. I was off oxygen for at least 3 hours in 90+ degree heat, and that didn't help matters. I had only planned to go to 1 quick appointment and hadn't taken enough O2 to last all day. When we finally got home, I was too weak to go upstairs; I just collapsed on the recliner, took a healthy dose of pain pills, put my oxygen on, and went to sleep.
Amanda spent the whole day driving me around and had to miss some things she had planned to do. She is such a sweetheart, she's so patient about taking care of me. I was glad that we got home in time for her to do her normal Tuesday night activities at least. When Michael came home, he let me cry while he put the medicine on my foot and then made the most wonderful smoothies. We sat and sipped and talked, and he really helped me calm down from everything and lifted my spirits. 
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