29Sep13 Sunny 90 degrees. Movie: 'Silver Linings.' Didn't even see the opening credits. I woke up on the wrong side of the bed. My appointment was an hour later this morning. I had one treatment. My feet were red and painful before HBOT. The dive did the trick. I headed back to the hotel at a level 6. I rested the rest of the day. When we left this morning there was a Kenworth truck parked in front of the hotel. It was still there when we got back. :0/

30Sep13 Sunny and 89 degrees. No HBOT today. Mondays are off days. Gram and I had dinner at Denny's then went on down to Target for soft shoes. I used their motorized cart. By time we were done my left foot was pretty swollen. My left leg is pink and both feet are still red much of the time. My hip and ankle feel like the tissues are tearing. My knees are sore too. These pain sensations are different than the normal CRPS pain I usually feel. I have that too. My overall pain level was a 6 most of the day; at bedtime it was a 7. I don't feel as weak as I did coming out of the HBOT yesterday, but I do black out when I stand up too quickly. Water, water, water! I must start drinking more water. Even so, my walking is getting better. I'm not going to be walking any distances for a long time yet, if ever.

Frank is still sick. He had a few good days after his Vet visit. He was given pain meds and sent home to Grandma/pa Hasty's house. Now, the meds don't seem to be working as well. For one thing he can't keep them down. He has been vomiting and is lethargic.

01Oct13 Sunny and 82 degrees. Overall pain is a 6 with a few spikes into the 7s. The tearing pain in my right ankle and left hip remains. The itching remains too. My soars continue to heal but I do have a few new ones popping up on my left arm and right leg. I woke at 12:00 am, but slept most of the day. Only one dive. Today's movie was 'Silver Linings.' It was limited to one hour because I was nauseous. On the way home we got a little confused and had to make a few Uies. I missed calls from Darrell (2), Ri, Kelly and the concierge yesterday. I didn't even check my phone till today. I don't know what planet I was on but it wasn't earth. I'm still trying to push the water.

02Oct13 Overcast in am. Partly cloudy in Afternoon. 76 degrees. I didn't know they had clouds in sunny Southern California. We could not see the mountains all day. Their presence was missed. I felt nauseous again this am when I woke up. It improved with breakfast. Only one treatment today. Movie: 'The Water Horse.' I slept through entire movie. My overall pain level in the morning was a 6. After the dive it improved to a 5. I'm really feeling good. Better than I have felt in a long time. I still have the pins and needles in my feet coupled with the numbness. I had splotchy redness on my feet before this morning's dive that practically went away afterwards. The burning and aching still nibbles at my pelvis, leg and left foot. I have shooting pain that runs up and down my leg into my pelvis. Again it nibbles at me from the background. I could almost ignore it. Almost. The tearing sensation in my right knee and ankle stops when I sit down. It is from use. It is my body complaining about me walking again after taking years off from the sport. It was suggested that I use a wheelchair for a few days to let the knee and ankle rest. I am thinking about it. I borrowed a walker to improve my stability. I don't know if it is the weather or constant sunshine, but it seems I am always hungry unless I am nauseous. We are hoping to fix my bladder problem too. I've been cathing for 5 years because the nerve damage makes it difficult for me to urinate. I have a neurogenic bladder with hematuria. I have frequent bladder infections. The problem has been tied to my CRPS. Hopefully my bladder will wake up too with these treatments. That would be fantastic.

Gram is doing great. She has the trip between the hotel and clinic down already. She is still a bit nervous driving, especially at night. That would be me too if it were me driving. We went to Walgreens to pick up several of my prescriptions after my morning treatment. I did take a rest while at the pharmacy but otherwise walked while shopping. It felt good to walk for a change. I expected cramping as a result, however it was confined to my right calf and improved with medication and sleep. The spasticity has been much worse in the past; my Dystonia takes over my forearms, hands, legs, and feet leaving me in a painful contorted posture.

03Oct13 Partly cloudy and 73 degrees. No mountains again. I woke at 2:30 am.
Two treatments today. Movie: 'The Hunger Games.' Watched the movie plus all the documentary after. Awesome movie. Managed to stay awake during both dives. 4! That's a FOUR! Yep. A four. I still have CRPS pain that gnaws at me, but it is so much improved. I am ready to go dancing or cycling, but I remain cautious. Not today. My overall morning pain was a 5, it was brought down to a 4 with the magical HBOT machine. My afternoon and evening pain levels fluctuated between a 4 to a 5 to a 6 and back to a 4. I call the pain in my feet 'the three sizes too small lead boots' pain. Too small because my feet feel like they are being squeezed very tightly. Lead boots because they become heavier and heavier the longer I am on my feet. Sometimes I can barely lift them. Today the pain is 'one size too small lead boots' pain. I returned the walker; it made walking even more exhausting for me.

I'm told I need to separate the RSD pain from the original nerve injury pain. The pain that runs up and down my leg was initially caused by the accident when I fell. Having that pain now is good because it indicates that the nerves are waking up. It typically shoots through the bottom of my left foot up my leg and lands in my left hip and buttocks. After today's second treatment it is stopped at my knee some of the time rather than my hip. The pinkish redness in my leg and feet is all but gone. My sores are still improving. I have new sores though on my right leg and both upper arms, and I can feel others just below the skin. I'm told they are caused by high doses of opiates. I am still convinced they are from my skin breaking down due to the CRPS. Either way, I am ready for them to be over. I have scars that will likely be with me for life, but they tell a story about a disease and an incredible ride back to health.

My family stress level is high because I am here and Darrell is back home. This makes me feel as though life is rumbling just beneath the surface ready to explode. I understand the necessity but it brings me no comfort. Money talks; especially now. Darrell has to work. Frank. What can I say. I miss the furry little boy. He is sick again. I am unsure how much life he has left. Does he feel abandoned and alone at the Hasty house as he nears the end? My Mom is here; she eases my anxiety.

Tomorrow after my dive, I have another Medtronic baclofen refill. Hopefully I can find the place. It is a right and then another right. The Doctor's office is on the right. Sounds simple enough. We will see. It doesn't take much to make it a challenge. Then, to the airport to extend the car rental for two more weeks. Oh, and the hotel too. Busy, busy, busy.

Hi Deb

A 4!!!!!!!! OMG I am so happy for you! I want to try this HBOT myself....

So glad you are doing so well, and coping with the separation from Darrell and Frank. I hope Frank improves soon, you must be very worried about him being so far away from you, but at least you know he is in good hands with people who love him too. Darrell must be so excited about the magical 4. I hope you can see a time coming where you might get down even lower....

Keep it up and well done for persevering with this through all the stress and anxiety. It's incredibly inspiring to read your diary about this treatment, thank you so much for all the information, as well as your thoughts and feelings on each day.

I'm rooting for you here, and hoping to see a 3 perhaps?!

Bram.

Bram,
Thanks Bram for your kind words of encouragement. I've been both up and down at the same time. I see some improvement with the treatments but I long for home and Darrell and Frank. I did reach a 4. It remains my lowest number yet. I'm still trying to get back at least to a 5 if not a 4 on the pain scale. Something happened last weekend to cause a flare ... most likely stress related. Note too that the flare has not been as severe or as long as previous flares.

My sores are healing, though I do have new sores that still pop up. They are smaller and heal quicker. The redness of my feet and left leg are more often pink rather than red. My overall pain numbers are down even after some activity. Granted that activity is minimal. As you noted, I am trying to stand taller instead of hunched over. I am starting my 6th week. And yes, it does seem like 6 weeks. I've not had to go it alone. Darrell made sure to set up caretakers to watch over me on the weeks that he could not be here. I do feel strong enough now that I might be able to go it alone if had to be.

By this diary, I hope you find some insights into the HBOT process and possible benefits, as you mentioned that you were considering the treatments for yourself. I know that you are suffering a flare of your own right now. I hope you find relief soon. I encourage you to take comfort in your wonderful poetry, if even just for distraction. For me distraction is key when trying to manage through the pain of CRPS/RSD. I've enjoyed your poetry corner. Thank you. I lack the skill.

BTW: I love animation. Ice Age, Toy Story, Shrek, Monsters Incorporated, etc. are examples of excellent graphic animation on the big screen. In another life I would be an animator working for Pixar or Disney or DreamWorks or ... Well, I can dream can't I?

04Oct13 Overcast and 86 degrees. Santa Ana Winds. Winds whipping around at 20-25 mph. I woke at 1:00 am. One dive today. Movie: 'True Grit.' The day started out at about a 6 on the pain scale with pain shooting up to the 7-8 range. The burning and aching were back in my feet and left leg/hip. After the morning dive my pain remained at about a 6 but the shooting pain improved considerably. My red feet turned to almost a flesh color. They were not as tender to the touch either. I was so tired after the dive that we had to return to the hotel for a quick nap before going on to the pain clinic. Recalculating. We had planed to go out for lunch but those plans were squashed; Gram had to fend for herself. After, we headed to the pain clinic for my pump refill. The directions were simple enough. Make a right onto Holt and a right onto Euclid, and the pain clinic was on the right about 2 miles down. We found it but there was no parking lot, only a residence. Recalculating. Parking and access was from the rear. After the Doctor filled my pump we headed to the airport. Again, it should have been simple enough. Get back on Euclid, make a left onto Holt, make a right on Vineyard. Vineyard becomes Airport Drive. Follow the signs to the rental car 'pick ups.' I insisted not the returns. Recalculating. A few turn-arounds later we found Enterprise Rental Car. I tried to help Gram pull the scooter from trunk. We assembled it and headed in except we were told to go to the returns instead. Recalculating. We headed back to the car, took apart the scooter, and shoved it back into trunk. Frustrated, I carelessly spilled the contents of my wallet onto the pavement behind the car. Remember the Santa Ana Winds? Yeah. My stuff went flying and Gram went chasing. Convinced we found all my cards: credit, insurance, license, etc. we headed to the car returns and took care of extending the rental contract. Exhausted we headed back to the hotel for dinner and rest after a very busy day. My pain levels while at the airport escalated to an 8 with pains shooting to 9 even 10. I had cramping in my legs too. I took my afternoon pain meds and a nap, but the pain continued at an 8. Because my numbers were so high, I was told to come in for another dive in the afternoon, but I was too tired to leave the hotel again. I chose not to go but stayed in bed instead. My pain continued all evening and night at an 8 even 9 now and again. Rethinking it, I probably should have gone back in for another dive.

05Oct13 Sunny and 90 degrees. Two dives today. Movies: 'True Grit' again and 'Iron Man 3.' My overall pain level was a 7 with shooting pains in to the 8-9 range. I felt as though I might spontaneously combust, feet first. My feet were not red but more pinkish instead. Regardless, they burned and were painful to the touch. After the first dive my pain remained at 7 but the burning pain in/on my feet had eased considerably. My left arm pain was back, and both hands ached. My left hand and arm cramped and curled in the afternoon. By bedtime my pain level remained a 7 but the shooting pain and cramping was back to 8-9. I heard and felt a loud snap in my left hip as I was getting ready for bed. I am worried that the RSD pain has come back in a vengeance. The increased inflammation was caused from the stressful trip to the airport. I need to keep my stress levels down. Gram reminds me that the day, especially the time at the airport, was really not all that stressful. The next time my pain dramatically increases like that, I need to head to the HBOT clinic for a dive to take care of the inflammation right away.

Waiting room factoids: Gram learned today that in winter there is snow on the tops of the mountains here in sunny Southern California, and the lows can reach into the 30s.

Surprise! Darrell showed up here this afternoon. When he spoke to me on Friday he thought that I sounded down. He rushed to buy a ticket and flew out to Cali on Saturday morning. :0) Gram and I had just arrived at the hotel. We didn't even have time to set down our Frosties when the bell rang. Cool! The man was here and I had to admit I felt a whole lot better. We three had a nice dinner out.

06Oct13 Sunny and 91 degrees. 2 dives. I woke at 12:00 am. Movies: end of 'Iron Man 3' and 'Juno,' with some 'Hunger Games' thrown into the mix. My pain level was a 7 going in. With the first dive it was brought down to a 6, but it went right back to a 7 by time we got to the hotel. I had shooting pain and cramping in my hands and stabbing pains in my left eye. My left foot felt like it was broken. I was wobbly when I walked and pretty hard for Gram to handle. Darrell purchased a transport chair that was lighter and easier to pick up and put in the trunk. My scooter was too heavy for Gram so I started using the chair to get around due to the increased pain.

We took Darrell to the airport at about 3:30 pm. for his flight back to Omaha. Then it was back to the clinic for my second dive. Gram and I were back on our own. I rested for the rest of the evening.

07Oct13 Overcast in morning/mostly cloudy rest of day. High of 86 degrees. I woke at 1:00 am. Being Monday, it was an off day for HBOT. I started the day with an overall pain level of 7. I had pink feet, but they still burned and were sensitive to the touch. There was some swelling of my left foot. I was able to get it in my shoe anyway. I had periodic pain stabbing me in my left eye too. The pain and cramping was back in my forearms, hands, and back. Gram wheeled me in the transport chair any time we left the hotel room. I've been in sunny Southern California for a full month. I have 2-3 weeks left to go. The diving is going well. I no longer need to have the Ativan in my pocket to keep me in the tank.

Gram and I made a quick trip to the Stater's market after having dinner out. I used the motorized shopping cart. Getting into the car after the market, I had a loud pop in my left foot. In the evening I had fierce cramping in my calves. I took 2 magnesium (combo mag, cal, d3, zinc) to help ease the cramps along with my evening meds, which include 2 tizanidine. Of course, the baclofen pump runs constantly into my spine, but sometimes the spasticity is too much for it to handle.

08Oct13 Overcast and 75 degrees. Two dives. Movies: 1) 'Iron Man 3,' 2) 'The Time Traveler's Wife.' I woke with a pain level of 6 at 1:30 am. My morning was fairly good. I did have a couple loud pops in my left foot. My pain level rose to a 7 in the afternoon. By evening I was at 9 with severe cramping taking me up into the 10 range. I had cramps in both legs, arms, back, pelvis, ribs, and chin. I had a raging bladder infection that peeked at about 8:00 pm in the evening, coupled with constipation that only made it worse. I was in misery. I took a ciprofloxacine, phenazopyridine, and 2 magnesium multi in addition to my regular meds and tried to rest.

09Oct13 Rainy and 63 degrees. Yes; it does rain in the high dessert after all. Two dives. Movies: 'Ironman 3,' and 'Mrs Doubtfire.' I woke at 4:00 am with a pain level of 8 after a night of broken sleep. My first dive helped bring me down to a 7 on the pain scale. Other than the dives I spent the day trying to rest. I was back in the transport chair with Gram pushing. My bladder infection raged on. I had cramps nagging me in my calves and left arm. My muscles and left wrist were sore after the night of severe cramping. I had a couple loud pops in my left foot and hip again. I continued with the mag multi, cipro and phenazo on top of my daily meds.

10Oct13 Sunny and 77 degrees. One dive. Movie: 'The King's Speech.' Susan gave me some magnesium/potassium powder to help with the cramping. I'm still using cipro and phenazo too. Feeling adventuresome, Gram and I opted for Marie Callender's for lunch. This is normally not a big deal, but we were in a foreign place and our pallets were starting to grow bored of the Denny's menu. I used my handy map app and we ventured out. Satisfied after lunch we fueled the car and headed back to the hotel for rest.

11Oct13 Sunny and 67 degrees. One dive. Movie: 'Life of Pi' again. I was at a 7 all day. Exhausted after the previous few days of cramping and infection, I slept in missing my morning dive. Day 3 of cipro, phenazo, along with the mag/potassium powder. I decided I will head home after next week. The dives have helped to bring my overall pain level down but also seemed to have topped-out pain wise. What treatments left will be once a day at a shallower depth to treat the remaining brain miscommunication.

Waiting room factoid: Gram read that Indonesians still throw sacrifices to their gods into the flaming volcanic calderas. Because the islands are made up entirely of volcanos, the residents depend on the volcano gods to protect them from explosions and fiery lava flows.

There used to be a member here that has passed on now, but he did in depth research on HBOT, and he recommended that the dives should go no deeper then 1.5 atmospheres. He said that deeper then that wouldnt be good for CRPS II. He also was spurring me to try this, but I could never get approval. He always told me that 80 dives at 1.5 would be the perfect way to battle the RSD, and said if I went deeper it actually would do more harm then good. He does have old posts in here, his name was Vicc.

Quite the ornery old guy, but I believe he did do his research, and have always wanted to give it a go.

Thanks Deb

Sorry you've had a rough week there, sounds like that bladder infection didn't help things at all...

I bet you'll be glad to get home next week - being away from all you know and love adds stress anyway, and as time goes on the pull just gets too much.

Overall I think it sounds like a success. It'll be interesting to see how next week goes and how you feel once you are home and settled again.

Bram.

Djhasty, I just wanted to wish you well and hope you feel better soon. My thoughts and prayers are with you. Take care.

Thank you Tessa for your cheers and encouragement. I'm feeling good about the treatments overall. I think I have a way to go caused by my flare. The flare too just happened at a time that we all could see what happened as far as the HBOT dives are concerned. I do still have a number of dives ahead, including follow up dives.

Thank you, SloRain, I'm sorry to hear of the death in your family. It is difficult when one of our loved ones is called home. Please take comfort in knowing our loved ones live forever in our hearts. My thoughts are with you. As far as your daughter, I am sorry to hear she came out of remission but happy to know that she found it again through Calmare. I am certain these alternative treatments will meet the challenge against this monster. I venture to say that one or more will become mainstream and approved by the FDA so that insurance companies will pay for treatments for those suffering. Hopefully soon.

Thank you, RSDRenee, thank you for your support and encouragement too. Yours and the others' bring me much comfort.

I wish that was true because there are plenty of HBOT systems you can buy between $15,000 and $30,000 but the majority of people that I know did not go into remission with those 1.3-1.6 ATA systems rather it had to be over 2.0 and in order to get that deep you have to get a 3.0 ATA system that costs over $100,000 used or goto to your local hospital or private HBOT facility that use 6.0 ATA.

Sometimes I just want to give up on getting a 3.0 and try out a 1.3 ATA purely for recovery and see if I do a hundred dives at home if it would help with anything.

I wish I knew more about it. There is another friend that bought a chamber and does the dives. I think there is a pic here of it. She would know a lot more then I about this. I do know it works for lots of folks.

This is the one she has.

http://neurotalk.psychcentral.com/al...pictureid=3445

She say is works great, and cant live without it.