Double Bump

So the foot thing was a bump - then came another bump. My left ear has been bothering me so I finally went to the ENT last Wednesday. He took one look at it and setup outpatient surgery for Friday morning. Seems my tube was sucked down into my middle ear and my eardrum grew back over it all. What a mess. Well fortunately there wasn't any infection in there and he released me for Remicade next week. The Infectious Disease doctor also released me for Remicade next week, so hopefully I'll be back on track soon.

I got my own flippers (since I think I may have got the infection from using the flippers at the Y), and I went swimming yesterday for the first time in 2 weeks. It felt GREAT. I also got these cool socks that you wear with the flippers (who would've ever thought of such a thing?). They were sooo comfortable and keep the flippers from rubbing against my skin. I really liked them.

I am sooooo ready to be healthy again, to be 'normal' again, to say YES when my friends and family ask me to go somewhere fun again. To hold a job again. I wonder if I'll be tethered to an oxygen tank for the rest of my life. I wonder if I'll ever climb Blood Mountain again? If I could, I would go up there with Amanda and stay all night under the stars. That would be heaven on earth.

On another note, I'm begging Michael to find a different job with a rotating schedule, or to work nights or something. I fear I've become such a burden on my Mom and Amanda taking me back and forth to all of these doctor appointments I have. Amanda will be going to college soon, then it will all fall back on Mom, and I hate the thought of it. She doesn't need the stress and expense of coming over here all the time to take me downtown. She needs a break from ME.

On yet another note, I did another one of my 'escapes' last week. It all started while I was trying to put up a wallpaper border in Will's room - I needed both Amanda and Will to help me. As usual, things deteriorated between the two of them. Finally Amanda left. It was really hard to finish it up without her help. I feel like my heart is being ripped out and pulled apart by them. It is so hard when your children seem to hate each other and disrespect each other like that. I could have gone straight to a very negative place. Instead, I packed enough stuff for an overnight trip, filled my oxygen tank, and left. I did do them the courtesy of leaving a note saying I would be back at 5AM the next morning (I had to be back to go for my surgery). I decided I needed a break and I needed to pamper myself, so I did. I checked into a very nice hotel, ordered room service, and watched movies. Every now and then, I thought about my 'problem' and started getting weepy and all, but for the most part I was OK. Maybe it wasn't the best response, but it was a better response than staying home and being emotionally battered all day. When I got home, Will apologized and seemed genuinely worried about where I had gone and if I had been safe. Amanda was mad at me and I think still is. She told me she is 'not to interested' in going on our vacation in August. I told her it's completely up to her, she just needs to let me know today because I have to have time to change things. I can't get refunds at the last minute. I am disappointed, because my kids haven't had a vacation with Mom for 4 YEARS. I was so excited to plan something special for them and to be able to go along with them to enjoy it. I made special invitations for each of them, I really tried to make a big deal of it and to make them feel special. I've decided that if Amanda backs out, I'll just try to get some one else (that can drive) to go with me and Will. I've decided not to let it ruin a special time, even though I'd wanted Amanda to share in it. I'm determined NOT to let it hurt me or wallow in rejection. That's healthy, right?

2 Steps Forward, 1 Step Back

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.

2 Down and 1 to Go

Today I had my 2nd epidural to attempt to stop the back pain I've been suffering from for the last 2 months. I've had buldging discs at L4/L5 and L5/S1 for nearly 20 years. Over the years, I've been blessed to avoid surgery by having epidurals, which have so far been successful. Now the doc says my L4/L5 vertabrae are "bone on bone" and the prognosis of the epidurals is not so good. But I'm hanging onto hope. The first treatment helped some - I'd say about 25% improvement. This treatment was done at a different facility (much better in my opinion), and I can already feel the improvement. I'm VERY hopeful for a positive outcome. I have an appointment already setup for my 3rd shot in 4 weeks at the same center. I really believe that after the 3rd shot I'll be much better and able to get around again. I learned a lesson about my oxygen - I've been leaving it at home if I "feel ok" and "think I can get by". When I got to the center, my o2 sat was 78%! They got me on oxygen right away. I hate it, but I just have to start being more consistant with it. When my back started hurting so bad, I sort of started getting lax because the weight of carrying it made my back hurt even more. But I can't go around with 78% sat (anything below 94% is considered low) !

We couldn't work out any arrangements for Will this morning, so he had to go to the Pain Clinic with us. It wasn't too bad, because as soon as I went back, Michael and Will went to McDonalds for breakfast. Shortly after they got back to the center, I was released. So Will didn't have too much time to climb the walls. I was hungry, so we took a quick stop by Waffle House for some comfort food - Cheese Eggs and Grits - for me. At the clinic, they gave me a 'feel good' shot to help me relax during the procedure, so I came home and slept until about 2PM. After that, I was up and around and had much less back pain than I've been having - I really think this doctor hit the right nerve! I got a package together for John and wrote him a letter and Michael took it to the Post Office for me.

Michael worked so hard cleaning the garage and washing John's car, and Will helped out. In the evening, they cleaned up and went to a Scout meeting where Will passed off some of his physical fitness activities. They came home with an extra boy - one of Will's friends came over to spend the night. Now the boys have had pizza and are downstairs playing pool, and Michael and I are upstairs getting ready to call it a day. There are plans to go to see fireworks at Wills park tomorrow night - Michael and Will always go. Then on Thursday they plan to go North for a guys-only trout fishing & camping trip. I love fresh trout. YUMMMM.