Djhasty,

Thank you so much for sharing your experience with this treatment! I have been considering it as well and look forward to learning how much it helps you.

Wanted to also share a netflix documentary that I enjoyed recently : Wild West & a The River of No Return both fantastic in my opinion.

Take good care,
Tessa

Thank you all for your support. I think we might be starting to get somewhere! Woot! I have been struggling to keep up with my diary. Please stick with me.

19Sep13 91 degrees Sunny. My overall pain for the day was a 6.5. By bedtime it was a 8. My feet are on fire. I did not sleep last night, but I had slept all the day before except when I was in route to RRH. I miss my daily FaceTime visits with my Granddaughter Riley. I miss Frank (dachshund). Darrell leaves Saturday and I can feel panic starting to set in. I am feeling weak/exhausted after each dive. I am even having trouble pulling myself out of the car. I am disappointed that the firie redness purple swelling in my leg and feet has returned. Susan tells me that I will go backwards before getting better. Today was a backwards day. Today's movies: Morning, 'License to Wed.' Didn't see any of it; I slept. Afternoon, 'Legend of the Guardians.' Animated artwork of the owls was great, but I didn't like the movie.

20Sep13 71degrees. Sunny. Weather still continues to affect me, because it is beautiful here even if there is a fall spell. Sure makes me happy. I woke this morning feeling pretty good, about a 6 on the pain scale. My pain level was a 7 by the by the afternoon even after my dive. $#=+! My left foot and leg were back to an 8 by bedtime with burning pain shooting from the foot up the leg into my hip.This morning I slept late to about 4:00 am. I have been feeling very weak and fatigued. It is all I can do to get myself out of the car and back to bed. I fell asleep on my scooter before I could get in the elevator. Susan says it could be too much oxygen. We need to space the dives out more. I had only one dive today due to the extreme weakness. The movie was ''Shrek.' It has always been one of my favorites.

I had my baclofen pump refilled in the afternoon. It was a close call. Eeeeek! I had the pump filled 2 week 2 days ago. According to Medtronic, I have to get it filled every 2 weeks while in HBOT. Since we arrived Darrell has been running by nearby hospitals looking for pain medicine doctors that would be willing to fill my pump. One of the hospitals recommended a Dr Cho. We didn't know if he would even agree to fill the pump but made an appointment anyway. I didn't see him. I saw a Dr Hasseltine instead. He is fantastic! I wish he or someone with his rapport and knowledge were in Omaha. He knew all about RSD and the latest treatments. He is a Medtonic specialist. He asked why Prialt was not mixed in with the baclofen. Dr Follett did not want to mix meds in the pump. Hasseltine uses Ketamine to treat some of his RSD patients. We talked about my CRPS II. He recommended a web site tamethepain.com to find Medtronic specialists in my area. He referred to my neurosurgeon Dr Follett an excellent Doctor. I agree. He loaded up my pump with liquid baclofen. I'll see him again in 2 weeks.

21Sep13. 74 degrees and sunny. I started out the day at an 8 on the 10 point pain scale. By bedtime it was a 7. I had one dive today. Movie was 'Rango.' Cute except a couple of the characters were too gnarly. I am still feeling weak. I was anxious about the close call with my pump, but now I have to get my pain medicines refilled before I go into withdrawal. I brought hand written and signed prescriptions from my neurologist, but I always get an uneasy feeling when I have to have them filled in another state. There is usually a glitch. Darrell tried to pick them up from Walgreens but was told that the scrips couldn't be filled because they were not written on 'special' paper. What!?! Now what!?! Option A: find a Doctor who would be willing to reissue them on the special paper; Option B: send the scripts home with Darrell, get them filled, and overnight them to me here in California. We called Susan right away. Um, Dr Underwood ... ? I have one 100 mcg/h and one 50 mcg/h patches left. I use 150 mcg/h total each dose. I'm due to change them today (Saturday). That gives me 3 days to figure it out. I couldn't have them filled early in Omaha because they are narcotics. Boy am I in a tight spot. Chewing my nails.

My friend Kelly arrived in Ontario California this afternoon. Yay! She will be relieving Darrell as my caretaker for the week. He is leaving 5:00 am Saturday morning to go back to Omaha for a couple weeks. We had dinner out at a nearby Italian restaurant. Really nearby. It shares a parking lot with the hotel. I walked to and from the restaurant on foot with the handy aid of my good ol' cane. Woot!

We got a call that our old dachshund Frank is sick. My heart sank. He has been staying with Darrell's parents while I am in California. He is 16, nearly blind, short on teeth, can't hear, and has liver cancer. He is fragile, special, and requires tender care. We phoned the Vet in Omaha Nebraska; they have a branch in Edwardsville Illinois. Don rushed him in to the office. Frank was given some pain meds and sent back to Grandma and Grampa's house. He is truly a sweet boy. I hope he can hang in till I get back home.

As a leisurely reading project I decided to peruse my medical records. Looking way back, waaaaaay back, I checked out my psych evaluation on behalf of my neurologist way before she even gave me a diagnosis. It was standard procedure. The report notes pre-dementia. Again, WHAT!?! I guess that was just conveniently left out of any of our conversations. Damn this has been a bad day!

22Sep13 76 degrees; always sunny. Even though my pain was a 7 most the day, it did drop to a 6 1/2 after my morning treatment. The movie was 'Toy Story.' Excellent! I woke this morning at 2:00 am. I walked with my cane most of the day. I used my scooter on my way back up to the room later in the day. The red color on my left leg and feet seems to be fading some. I am very anxious because I am worried about Darrell who kinked his back lugging me and my stuff to sunny Southern California, Frank, and whether or not I will be able to fill my Fentanyl and Oxycodone. I am still fatigued but feeling better. Tomorrow is a day off. I'll hit two-a-days again on Tuesday.

I was finally able to pick up my meds. Yay! Dr Underwood was kind enough to rewrite my prescriptions on the special paper. I took the scripts straight to Walgreens incase they would need to talk with DrU. Sure enough. They called him to confirm that it was his writing and signature on the special paper. Then they checked my prescription history to make sure I have been on the stuff. I gave them my DNA, my first born Grandbaby, drivers license, and signed my life away to the state of California. Did I mention my credit card. But, I got my meds. Whew! That was too close for comfort. Thought of taking an Ativan. I was trying to figure out the logistics of plan B or even C if we had one. Well, now I am good for 30 days. I should be home by then.

23Sep13 87 degrees. Sunny. Sat at the pool today but stayed in the shade. Got a little overheated. Went inside and cooled off. No problem. Yep; I love this weather outside of the smog that rolls up the hill from LA. Today was a day off from HBOT. No movies. Still walking with my cane. I'm at a pain level 6. I have been all day. Of course the only thing I've done is venture out to the pool. Nice. Tomorrow I am shooting for a 5.

FrankFurter Hasty

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I know what a pain in the rump it is to deal with the tamper-resistant Rx paper for fentanyl patches. I had to go thru extra stress while I waited for my doctors to sort this out with the pharmacy on a few occasions. It's such a pain because these scripts cannot be called in, they have to be hand delivered. I think there is more technology in this paper than there is in US paper currency. That paper will say void on it if someone tries to photocopy the scripts plus many other guards are built into it. It's the best way the DEA can track these hardcore meds is what I was told. I'm glad it worked out for you but I bet your anxiety was amped up in the meantime while you were waiting for those patches.

Have you ever tried breathing exercises for your anxiety? One simple exercise is putting your thumb or finger on one nostril and breathing and then switch to the other side. I don't know if its the distraction from whatever stress attack is going on or if its something else but I find it to help when I don't want to pop an anti-anxiety pill. If you ever tried yoga, it's very similar to that type of breathing.

I had my Pom for 15yrs then one day her kidneys started going bad and she passed. Those lap dogs might be small but she gave back more love than my large dogs combined. I hope your dog feels better soon.

Prialt is very expensive. The cash price is between $3000 and $5000 per pump refill. So hopefully insurance can cover some of this. It's really hard to get the right mixture especially if you already have other meds in your pump but I finally said that I will give it a try in 2014. Hallucinations used to be a major side affect but if they give you just the right amount of prialt then i was told its not as bad.

do you remember when i asked about what size reservoir? My guess is you have the smaller reservoir and I only say that because you have to be refilled every 2 weeks. I chose the larger reservoir because I wanted fewer trips to the doctors office but it does stick out. They both look like a hockey puck but mine is twice as thick. I tend to bump it once in awhile and man does that hurt but the pain goes away in 15 min or so.

Can you have dilauded or something similar put into your pump instead of putting those fentanyl patches on? You wouldn't have to deal with monthly scripts or withdrawal, you would gain back memory and clarity and the ability to drive plus so much more.

Thanks again for keeping your diary up. I really hope this HBOT works for you.

Hopefully this reply makes some sense as I can barely keep my eyes open now so it's off to bed for me.

Mike

Hi Deb

Another great installment - thank you so much!

I'm sorry your old pal is so poorly, it's such a distressing time, I had two cats that had been with me 17 and 21 years, and I lost them both in about 2 months - heartbreaking but at least they sleep in peace. I hope Franky is doing well now and will give you a wag on your return

Ah meds meds meds. A constant source of worry and hassle to many I suspect. I'm glad you got them sorted out, yet another cause to be so glad of our loved ones who go the extra mile for us (quite literally sometimes).

Yay on Toy Story and Shrek! Quality films....I love them Hope you get some more decent ones in the next week or so of dives.

I look forward to hearing your next post - and reading that you made it to a 5. That'll be a good day...

Bram.

Hi Djhasty! Still pulling for you hon! Just wanted you to know that I have been reading your posts, and that you should be SO PROUD of yourself!! Hang in there!

I think the tamper resistant paper is brilliant. The problem was that I was in another state far from home with scripts written on regular paper. It was a selfish complaint on my part. My anxiety was through the roof. So far though the Ativan I brought remains in the bottle. I have only taken one for the first dive. It is like a security blanket. As long as I know I have it handy I'm good. Thank you for the breathing tip AlaskaMike. I most certainly will give that a try, and when I am a little less off balance I might try yoga. The pain meds have caused me to have respiratory depression, which has made it necessary for me to be on oxygen. For that and other reasons, I'd be thrilled to get off the stuff.

We had another dachshund named Oscar Meyer (get it? Oscar Meyer FrankFurter). My girls named them. Oscar died two years ago October. We still miss him. We love these little guys. I had one growing up too. Frank is doing so much better after getting some meds from the Vet. Grandma Hasty reports that he is, "acting like a puppy."

The movies are a fun addition to the HBOT treatments. I love animation. In another life that would have been my chosen field. It amazes me. Monsters incorporated is another one of my favorites.

Back to two-a-days this past Tuesday. Still feeling okay. I think we might have the kinks worked out now.

Thank you all for your support. Means a lot to me.

I love the names. I had daschunds while growing up. My brother named one Adolf. That goofy boy was a little hitler too lol. They are amazing dogs. Each had their own personalities lol. I hope this treatment works and your boy gets better. All our 4 legged brat children are just that. Our children and it sucks if you can't be with them when they don't feel good. I will keep praying for everyone and add Frank to my prayers.

The critters can be quite comical. The two dachshunds actually belong to my girls. When the girls left for college, my husband and I were awarded the dogs. It would have been outrageous to try to separate Oscar Mayer from FrankFurter. They grew up together and had been living together for years.

Thank you for the well wishes. I hope for you some pain free days ahead.