Patty's epic adventure

6/26/24 Geez, it's been a long time since my last post.  I guess that means I'm getting better - so that's a good thing.  I had physical therapy in the pool for weeks and now I'm doing the exercises in my own pool, so I'm happy to not have to drive to do that.  Plus, it's hot.  My pool is 93 degrees now - and it's not heated....  We have a 12,000 gallon hot tub.  I saw my ophthalmologist for my last visit for awhile (I hope).  Turns out he can't help me any more.  My vision is 20/30 and he is stumped as to why it's not better.  He referred me to a Neuro ophthalmologist in Shreveport, Louisiana.  I will see him next month.  He says he's the best around, so I'll drive 100 miles for that appointment. I saw a pain specialist for my back and got needled again.  He gave me 4 shots in my back to try and numb it, but it only worked 1 day.  I overdid it after the tornado hit by picking up limbs in the yard.  So. Many. Limbs....

  5/19/24 Today’s Sunday. Last Monday I went to the rheumatologist. He did an exam and then they took a lot of blood. They’re going to run a lot of tests and they will come back at different times. They’re not going to call me until they have them all, however. That will take up to two weeks. He says I definitely have an auto immune disease, He is not exactly sure what it is.   He does not think at this time that I have rheumatoid arthritis, though. He says it doesn’t go to the back, so I reckon that’s pretty good news.  On Tuesday, I went to another doctor for acupuncture. However, when I got there, he said he would like to try needling. I had heard of that before, so I told him I would do it. That was an interesting visit. First, he poked around and then marked my back. He sterilized it and started inserting the needles. About halfway through, I asked him if this was like acupuncture, and he said not really. The needles are different. I asked him if I could see one...

  May 4, 2024 It's Saturday.  I've been sleeping most of the past 4 days.  It hit me on Wednesday and I could hardly stay awake.  Clammy, but no fever.  Didn't want to do anything.  Even get the mail.  Too tired.  Didn't care.  Today is a bit better, but I'm slow.  Needed to schedule stuff, take care of insurance, etc., and I did nothing.  Absolutely nothing.   This morning, I got a call from my oncologist.  The one that retired as of yesterday.  She was sitting in her backyard talking on her cell phone.  She told me to write her number down and keep it.  She said I was special to her and she wanted me to keep in touch.  Wow.  My heart smiled.  She spoke for quite awhile and explained a lot of things.  She told me to take a Covid test.  I did.  It was negative.  She is concerned about my low white count, but told me to eat a lot of protein, etc., and then we'll test it...

  4/28/24 Today is Sunday.  I went to visit my little brother in Idaho last week and had the flight from Hell getting up there.  I was 6 hours late and had to fly to San Francisco on an alternate route.  Geez.  Coming home, I made my flight with 4 minutes to spare.  I hate American Airlines now.  It usually takes bout 12 hours to get there, and that's already a long day - I don't need issues in route.   All of my test results are back and a lot of them are abnormal. I do have some good news, though. There is no evidence of my old cancer. But, that’s where the good news ends. My rheumatoid factor is high, and my anti-nuclear factor is high.  Both of these factors indicate a systemic auto immune rheumatic disease like cancer and inflammatory arthritis. They also indicate systemic sclerosis. It affects the esophagus,  lower G.I. tract, lungs, heart, and kidneys. There is no cure, but they can treat the symptoms. It will affect my esophagea...

  4/15/24 It's Monday.  A poopy one, at that.  Nothing seems to be going right today.  I should just crawl b back in bed and start over.  First of all, my oncologist is retiring.  i won't see her again.  I told her years ago that she wasn't allowed to retire until I died.  She broke the rule.  She set me up with her partner in the same clinic.  Even Susan's old oncologist is retiring.  Obviously, I need younger doctors.  The day went downhill from there.  I'll spare you all the stupid details, so this will be a short post.  They drew 8 vials of blood this morning for my ctDNA test.  It stands for 'circulating tumor'.  It takes 8 days to get those results, so I'll probably hear something while I'm in Idaho next week.  My white count is down to 2.7 and she doesn't know why.  She wants to check my bone marrow, but I convinced her to wait a little while longer.  I'm planning to 'will' the count b...

  4/13/24 My posts are getting farther and farther apart.  I'm not very newsworthy these days, however, I have another ctDNA blood test in 2 days.  It'll take a few days for the results, but this is the big one, so prayers are welcome. We've been camping and traveling a bit, but I'm now going to physical therapy in the pool.  They're trying to help my back/hips since my spinal stimulator was removed.  They don't want to keep giving me steroid injections and I can't stay on the anti-inflammatories much longer.  They are afraid of kidney damage, so I have to go get that tested soon.  I'll probably do that when I get back.  I'm flying to Boise next Thursday to visit my little brother, Kurt.  His heart is giving him trouble, so I figured a visit from me was all he needed...... A couple weeks ago I had just gotten into the PT pool and they had to take me out with the lift chair.  My chest hurt like a buggar.  It was bad.  I knew it ...

  3/5/24 I have a story to tell you today. My lymphedema has been bothering me a bit more than usual lately, so I have been wearing my compression garments. The compression camisole, to be exact. It’s not very comfortable, and it gets hot, so I’m not overly fond of them. They do keep everything scrunched up, though. Several years ago, we went to the Texas state fair. Jessica and I chose to get on a wild ride that spun around like crazy and flips you upside down and every which way. David opted not to go, so he held my purse. We had a wild ride and it was great fun. We both totally screamed at the top of our lungs, and I would do it over and over again if I had the chance. She and I are wonderful roller coaster partners. Anyway, when the ride was over and the bar flipped up, we stepped out of our little cab. At that point, I realized something was amiss. You just know when something doesn’t feel right. I looked down, and sure enough, something went wrong. My left boob had apparently...