Tuesday, March 8, 2011
Pictures are up from California Trip
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| PCH headed north to Santa Monica |
I am still making good progress but it is a roller coaster like I was warned. Some days I am just amazed at how much better I feel and how much more energy I have, then there will be a few days when I wonder what I did to myself because I feel so lousy, again. Overall the graph line is trending upwards, so its all good!
Here is a link to the photos from South and North on the Pacific Coast Highway (PCH) from Feb 19, and 20.
California 2001 This is a flash based album so it won't work on iAnything. Sorry.
Tuesday, March 1, 2011
My CCSVI Adventure in Costa Mesa, California - Feb 16-22, 2011
Travel to Costa Mesa, California
Day 1: Feb 16, 2011
What a nice part of the country! What a nice flight on Continental Airlines. First class is almost as good as having your own private Lear 55 and the bathroom is so much warmer. I cannot recall the last time I flew first class, it might have been in mid evil times, at least the dark ages. I like being spoiled. I enjoy the legroom and the drinks before flight time. Too bad I cannot drink at the moment. :( Deb directed us right and we took the cart at intercontinental from security to the gate as it was, of course, at the far end, the bitter end of the terminal. Murphy's law of walking. If you can't, it will be as far away as humanly possible. Fooled the old boy this time.
Our room at the Hyatt is nice and clean but old. The hotel is old but the people are so friendly and helpful, it makes up for the age of the place. We Have as nice view of the Bay. Looks like a harbor to me, but they refer to it as a bay. The grounds are gorgeous and tomorrow morning, weather permitting, the camera comes out and I will follow where it leads around the grounds.
My MRV got rescheduled from 8:15 AM to 12:45 PM. Thank goodness for little wonders as most of my friends and family know how sluggish I am before 10 in the morning. That shifted my Doctor's Consultation to 4:30 PM so I get an afternoon of the medical stuff. We better go eat or we will miss American Idol!
Dinner!
We only had an hour to grab something for dinner so decided to eat here at the Hyatt to save time. Usually hotel food is average at best but were we ever pleasantly surprised! The food was fabulous. I had a salmon caesar salad that even had anchovies. Best salmon salad I have ever had. The fish was cooked perfectly. Not sushi and not dried cat food nuggets, but perfectly seasoned, moist, tender and yummy. The lettuce was cut up just to the right size where one didn't need knife nor a spoon but just a fork to eat it gracefully! I had to stop or I wouldn't have had enough to save for breakfast tomorrow, :)
Another comment to close my day. Everyone we have come in contact with here in CA has been super friendly, courteous and incredibly helpful. Amazing. This totally ruins our long held belief, borrowed from elsewhere, that Californians are just fruits, nuts and flakes. The few friends of mine from CA are pretty wacky. But wacky in a good way.
Goodnight. Off to bed. Pooped. It's midnight thirty already. Long day tomorrow.
Day 2: Testing Day!
MRV with/out contrast
I am so glad my testing was after lunch! Woke up after 8 and lounged around most of the morning gathering my flight depleted energy to go to the MRV then right along to meeting with Dr Arata at 4:30. For breakfast, I ate my leftover Salmon salad from last night and an Ensure muscle builder, which had to last till after the MRV.
The MRV went pretty well and I was in for an hour and twenty eight minutes. Oh man did my head hurt where my skull rested on the hard base of the machine when I got out of there And, I was pretty dehydrated. Before going to see Dr Arata we did have time to hit up the local Joe's Crab Shack for happy hour so I could have a salad and an ice cold lemony iced tea and Dennis could have a marguerita. We shared an order of boiled shrimp. Just the thing to bring me back to life.
We met the most delightful waitress named Sarah, originally from Northern CA, who now was enjoying the beach with her beach dog! She was genuinely friendly and outgoing and suggested we drive south on pacific coast highway toward Laguna Beach and San Clemente. Also Joe's was hosting "auditions", live interviews, with about 30 people. They all got up and did a line dance which was hilarious because several of the guys, pretty geeky looking in their dress and presentation, couldn’t dance worth a flip. It took a toll on my composure not to laugh at them. One gal, about our age or not far from it, went up and acted like a monkey. She was a hoot and we all laughed over it. She loved the attention. Even though she was older than the average Joe’s server, I bet she would make a great addition to this restaurant.
The Meeting with Dr Arata
We were late! Trying to get to where we were meant to be meant going around in circles with that damned Garmin default female voice telling us go right when there was no road to turn right on. Screw the Garmin.
Anyway even before I finished my paper work, we were ushered into a room and within 5 minutes Dr Arata came in and began to ask questions. His main one was whether I had headaches and then how well was I sleeping. I explained I rarely got headaches other than tension ones and usually in the morning or when I was very tired. He wasn’t too surprised that I slept like a brick for 6 or so hours but woke up more tired than when I went to bed. Also he wanted to confirm bladder and bowl issues as well as chronic fatigue and bad balance. He explained all about CCSVI and how the veins and valves worked etc. Most of it I knew but it was very good for Dennis to hear about it.
He said after looking at my MRV and discussing symptoms that I most certainly have the problem and treatment should help. Also in the conversation he asked about sweating and I explained I almost never sweated before menopause and rarely now that the hot flashes have ended. This, he explained, was another symptom of CCSVI and that it could throw off heat and body temp regulation as well. When I threw out that I was of almost pure Scottish decent with a tad of polish thrown in, that put the lid on it for me. He said that most of his patients, I think he said somewhere in the 90% range, were of Scottish decent and that we must all have inherited a bad gene that plays a huge part in this CCSVI. I gathered a majority of his patients are Canadians because he alluded to this while explaining that while the English and Irish migrated to America, the Scots traveled to Canada, thus the high rate of CCSVI in Canada. That tidbit I didn't know at all. History was never my strong subject in school. I was a pre med/vet major.
We went over the procedure and how he probably will have to tear at least one of the valves in the left jugular near the collar bone and if necessary put a stent in the Azygos vein if it is being squashed between the spine and the heart. That was not clearly shown in the MRV, I don’t think, as it is twisty to start with and hides behind the heart.
Afterward, I will need to lie around for the rest of the day and might have a headache and some pain and will have to take Advil for a few days, but that with Versed and fentanyl plus a local at the site, the procedure shouldn't hurt at all except for pressure. Veins have no nerves and don't feel pain. I will have to take a drug like heparin for two weeks to prevent clotting but after that, nothing! Those are good words for me. Less drugs.
I am so ready! He also was careful to mention the procedure would not cure my MS but that I might feel some relief right away from the cold hands and feet as the blood flows down I-10 again rather than poking along the feeder roads all the time!
He also mentioned that progress with the MS symptoms would probably get better over time and that I would need some PT to help me walk normally again, and find and fix problems with strength and. Lindsay and Dr Ray can probably deal with a lot of these things for me. The numbness in my hands and feet, he suggested, might be from thoracic outlet syndrome and he could recommend Doctors in Houston to help with that if this procedure doesn't fix the issues. We were totally impressed with Dr Arata. He said he finds this surgery exciting and very rewarding as it has such benefits for his MS patients. This is all he does now. We loved his staff too. They were all kind, professional and friendly. I even got to meet Krissy Bradley. Sweetheart!
After this long long day we went back and ate at the hotel. Since I cannot eat or drink after midnight, I had a big steak dinner with bread, (the devil) and veggies and a huge cold tea. Will eat the leftovers at 11:55 just before bed. Nite nite.
Day 3 - The big Day: Liberation Procedure!
February 18, 2011
At 6:30 AM I woke up after a great solid six hours sleep. I want water. No, nothing doing, I have to sip three times to swallow my morning pills, Gabapentin, Valium, and Thyroid. The hydrocortisone I did via cream to avoid trashing my stomach as I always take it with food, putting it on my back where it itches after lying down so much. Am I nervous yet? Surprisingly no, I am not worried or anxious at all. Guess the Gabapentin and Valium took care of that. So, relaxed and excited, I took a warm shower and went back to sleep until fifteen minutes before time to leave.
We were a bit late getting to the Renaissance surgical center but not by much. Dennis and I sat in the waiting room for maybe 5 minutes and then were called into the little Paperwork room where we signed off on the hippa stuff and all those little niggling things required by any medical practice. Been there before and done all that.
Right away, my pre-op nurse came and led me away while asking Dennis to leave his number so they could call him when I was done. I was so impressed with the whole set up, except I had to strip and even remove my undies. Gosh, I thought, I hope I don't wet the table. Funny how stupid stuff like that runs through your mind when faced with much more important things.
All the nurses were incredibly nice, very professional and did all they could to make me feel at ease. After re-garbing into the oversized hospital gown, I got oxygen in the nose tube and blood oxygen finger monitor and blood pressure cuff all put on. Then the best part, a warmed blanket! Ahhhhh. The IV nurse, an older and very experienced gal, managed a quick and painless stick on the first try even though my veins pulled their usual hide and go seek trick when they saw the needle coming. LOL! Didn't fool the nurse at all, as she found a good one right off. Now looking back on it, an hour after the procedure, I cannot see where the IV was. Grade A!
And so I ramble along... At about nine I guess Dr Arata stopped by and asked me if I had any questions or concerns and I told him I was disappointed I couldn't watch the procedure and asked if he would narrate a bit if I was lucid enough to listen. He agreed to that and we were off to the OR!
Once there, I transferred to a different table, one infinitely more comfy than the pre op table which was definitely the low point at Renaissance center. Brick hard and lumpy.
My OR nurse got me all organized with the tubes and cords and then they had to do the bikini wax to make sure the groin area was prepped right. Actually, not a wax but a shave. If you are going, don't worry about it, no big deal. Then you get a nice wash with orange soap that looks like a nice Walgreens cheap instant tan later but it's not Betadine, and I forget what they said it was. Then comes the versed and fentanyl and out go the lights on your memory. However Dr Arata did humor me and started the narration with the entry into my femoral vein. That was the last I recall until I was told to hold my breath while he popped my left jugular. It felt like it was next to my left ear, but later he told me it was by my collar bone. Had to do this on the other side I think, but cannot really recall clearly, thank you Versed. No pain at all with this. I didn’t feel a thing.
The Azygos was a bit painful even though it was supposed just be pressure. At that point I was chirping Ouch Ouch rather loudly so I got another hit of fentanyl.
Suddenly it was all over. I think Dr Arata said everything went just fine and I didn't need a stent in the Azygos vein which was a $2000.00 piece of good news! So back to the hard pre op table and off to post op area. I was told to lie still, keep my legs un-crossed and straight and to just rest. My nurse gave me ice chips a few times, the angel! My mouth was incredibly dry. I think the oxygen does that to a person as well as having nothing serious to drink since last night. So I slept.
After two hours, and the versed mostly worn off, I got to go home. Out came the IV, off came the horrible super sized hospital gown and on went the street cloths. The nurse wouldn't let me get dressed by myself so I wouldn't use my muscles and strain the groin area which could possibly open the clot in the hole in my leg. It was a bit embarrassing but we got ‘er done. Next time I would wear a caftan. Would be easier than sweatpants or jeans and a tee-shirt.
I left with orders to lay low for 24 hours, no strenuous activity and to lead with my non punctured leg going up the stairs to my hotel room. Also left with a script for Pradaxa to prevent clotting which I have to take for 2 weeks and Advil, 3 - 200 mg 3 times a day for 3 days. I haven't taken that much Advil in my life! So I am loaded up on drugs but just for a while, then nothing. BtW, there is one pharmacy, RiteAid, just around the corner from the Renaissance surgery center that keeps Pradaxa in stock specifically for Dr Arata's patients. It's on the corner of Orange and 17 th, I think. Definitely on Orange. Don't trust your retail car’s GPS! Especially with the right turn only female voice.
So how do I feel? In a word, wobbly. I guess the versed is still working its way out of my brain. No great changes right off but if I feel anything it might be that my hands are warmer and a bit less numb. But, I wasn't expecting total recovery in an hour. Let's wait a week or two when the drugs end and see then. Advil tends to make my hands swell and makes me bloated and trashes my stomach and who knows what the Pradaxa will do.
Back at the hotel I climb into my bed with a sandwich and large bottle of water and kind of doze off for the rest of the day. Since I was supposed to lay low, we ordered room service for dinner and made it an early night.
If anything, my neck hurts a little bit on the left side where I heard the huge popping during the procedure. The sternocleidomastoid muscle to be more specific.
I also started sweating. Sweating all over. Not the same sweating as hot flashes, but full body sweating. This has to be a good thing! Carry out those toxins that have lived in my body for years!
Yay!
More to follow....
Day 1: Feb 16, 2011
What a nice part of the country! What a nice flight on Continental Airlines. First class is almost as good as having your own private Lear 55 and the bathroom is so much warmer. I cannot recall the last time I flew first class, it might have been in mid evil times, at least the dark ages. I like being spoiled. I enjoy the legroom and the drinks before flight time. Too bad I cannot drink at the moment. :( Deb directed us right and we took the cart at intercontinental from security to the gate as it was, of course, at the far end, the bitter end of the terminal. Murphy's law of walking. If you can't, it will be as far away as humanly possible. Fooled the old boy this time.
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| View from room at Hyatt |
My MRV got rescheduled from 8:15 AM to 12:45 PM. Thank goodness for little wonders as most of my friends and family know how sluggish I am before 10 in the morning. That shifted my Doctor's Consultation to 4:30 PM so I get an afternoon of the medical stuff. We better go eat or we will miss American Idol!
Dinner!
We only had an hour to grab something for dinner so decided to eat here at the Hyatt to save time. Usually hotel food is average at best but were we ever pleasantly surprised! The food was fabulous. I had a salmon caesar salad that even had anchovies. Best salmon salad I have ever had. The fish was cooked perfectly. Not sushi and not dried cat food nuggets, but perfectly seasoned, moist, tender and yummy. The lettuce was cut up just to the right size where one didn't need knife nor a spoon but just a fork to eat it gracefully! I had to stop or I wouldn't have had enough to save for breakfast tomorrow, :)
Another comment to close my day. Everyone we have come in contact with here in CA has been super friendly, courteous and incredibly helpful. Amazing. This totally ruins our long held belief, borrowed from elsewhere, that Californians are just fruits, nuts and flakes. The few friends of mine from CA are pretty wacky. But wacky in a good way.
Goodnight. Off to bed. Pooped. It's midnight thirty already. Long day tomorrow.
Day 2: Testing Day!
MRV with/out contrast
I am so glad my testing was after lunch! Woke up after 8 and lounged around most of the morning gathering my flight depleted energy to go to the MRV then right along to meeting with Dr Arata at 4:30. For breakfast, I ate my leftover Salmon salad from last night and an Ensure muscle builder, which had to last till after the MRV.
The MRV went pretty well and I was in for an hour and twenty eight minutes. Oh man did my head hurt where my skull rested on the hard base of the machine when I got out of there And, I was pretty dehydrated. Before going to see Dr Arata we did have time to hit up the local Joe's Crab Shack for happy hour so I could have a salad and an ice cold lemony iced tea and Dennis could have a marguerita. We shared an order of boiled shrimp. Just the thing to bring me back to life.
We met the most delightful waitress named Sarah, originally from Northern CA, who now was enjoying the beach with her beach dog! She was genuinely friendly and outgoing and suggested we drive south on pacific coast highway toward Laguna Beach and San Clemente. Also Joe's was hosting "auditions", live interviews, with about 30 people. They all got up and did a line dance which was hilarious because several of the guys, pretty geeky looking in their dress and presentation, couldn’t dance worth a flip. It took a toll on my composure not to laugh at them. One gal, about our age or not far from it, went up and acted like a monkey. She was a hoot and we all laughed over it. She loved the attention. Even though she was older than the average Joe’s server, I bet she would make a great addition to this restaurant.
The Meeting with Dr Arata
We were late! Trying to get to where we were meant to be meant going around in circles with that damned Garmin default female voice telling us go right when there was no road to turn right on. Screw the Garmin.
Anyway even before I finished my paper work, we were ushered into a room and within 5 minutes Dr Arata came in and began to ask questions. His main one was whether I had headaches and then how well was I sleeping. I explained I rarely got headaches other than tension ones and usually in the morning or when I was very tired. He wasn’t too surprised that I slept like a brick for 6 or so hours but woke up more tired than when I went to bed. Also he wanted to confirm bladder and bowl issues as well as chronic fatigue and bad balance. He explained all about CCSVI and how the veins and valves worked etc. Most of it I knew but it was very good for Dennis to hear about it.
He said after looking at my MRV and discussing symptoms that I most certainly have the problem and treatment should help. Also in the conversation he asked about sweating and I explained I almost never sweated before menopause and rarely now that the hot flashes have ended. This, he explained, was another symptom of CCSVI and that it could throw off heat and body temp regulation as well. When I threw out that I was of almost pure Scottish decent with a tad of polish thrown in, that put the lid on it for me. He said that most of his patients, I think he said somewhere in the 90% range, were of Scottish decent and that we must all have inherited a bad gene that plays a huge part in this CCSVI. I gathered a majority of his patients are Canadians because he alluded to this while explaining that while the English and Irish migrated to America, the Scots traveled to Canada, thus the high rate of CCSVI in Canada. That tidbit I didn't know at all. History was never my strong subject in school. I was a pre med/vet major.
We went over the procedure and how he probably will have to tear at least one of the valves in the left jugular near the collar bone and if necessary put a stent in the Azygos vein if it is being squashed between the spine and the heart. That was not clearly shown in the MRV, I don’t think, as it is twisty to start with and hides behind the heart.
Afterward, I will need to lie around for the rest of the day and might have a headache and some pain and will have to take Advil for a few days, but that with Versed and fentanyl plus a local at the site, the procedure shouldn't hurt at all except for pressure. Veins have no nerves and don't feel pain. I will have to take a drug like heparin for two weeks to prevent clotting but after that, nothing! Those are good words for me. Less drugs.
I am so ready! He also was careful to mention the procedure would not cure my MS but that I might feel some relief right away from the cold hands and feet as the blood flows down I-10 again rather than poking along the feeder roads all the time!
He also mentioned that progress with the MS symptoms would probably get better over time and that I would need some PT to help me walk normally again, and find and fix problems with strength and. Lindsay and Dr Ray can probably deal with a lot of these things for me. The numbness in my hands and feet, he suggested, might be from thoracic outlet syndrome and he could recommend Doctors in Houston to help with that if this procedure doesn't fix the issues. We were totally impressed with Dr Arata. He said he finds this surgery exciting and very rewarding as it has such benefits for his MS patients. This is all he does now. We loved his staff too. They were all kind, professional and friendly. I even got to meet Krissy Bradley. Sweetheart!
After this long long day we went back and ate at the hotel. Since I cannot eat or drink after midnight, I had a big steak dinner with bread, (the devil) and veggies and a huge cold tea. Will eat the leftovers at 11:55 just before bed. Nite nite.
Day 3 - The big Day: Liberation Procedure!
February 18, 2011
At 6:30 AM I woke up after a great solid six hours sleep. I want water. No, nothing doing, I have to sip three times to swallow my morning pills, Gabapentin, Valium, and Thyroid. The hydrocortisone I did via cream to avoid trashing my stomach as I always take it with food, putting it on my back where it itches after lying down so much. Am I nervous yet? Surprisingly no, I am not worried or anxious at all. Guess the Gabapentin and Valium took care of that. So, relaxed and excited, I took a warm shower and went back to sleep until fifteen minutes before time to leave.
We were a bit late getting to the Renaissance surgical center but not by much. Dennis and I sat in the waiting room for maybe 5 minutes and then were called into the little Paperwork room where we signed off on the hippa stuff and all those little niggling things required by any medical practice. Been there before and done all that.
Right away, my pre-op nurse came and led me away while asking Dennis to leave his number so they could call him when I was done. I was so impressed with the whole set up, except I had to strip and even remove my undies. Gosh, I thought, I hope I don't wet the table. Funny how stupid stuff like that runs through your mind when faced with much more important things.
All the nurses were incredibly nice, very professional and did all they could to make me feel at ease. After re-garbing into the oversized hospital gown, I got oxygen in the nose tube and blood oxygen finger monitor and blood pressure cuff all put on. Then the best part, a warmed blanket! Ahhhhh. The IV nurse, an older and very experienced gal, managed a quick and painless stick on the first try even though my veins pulled their usual hide and go seek trick when they saw the needle coming. LOL! Didn't fool the nurse at all, as she found a good one right off. Now looking back on it, an hour after the procedure, I cannot see where the IV was. Grade A!
And so I ramble along... At about nine I guess Dr Arata stopped by and asked me if I had any questions or concerns and I told him I was disappointed I couldn't watch the procedure and asked if he would narrate a bit if I was lucid enough to listen. He agreed to that and we were off to the OR!
Once there, I transferred to a different table, one infinitely more comfy than the pre op table which was definitely the low point at Renaissance center. Brick hard and lumpy.
My OR nurse got me all organized with the tubes and cords and then they had to do the bikini wax to make sure the groin area was prepped right. Actually, not a wax but a shave. If you are going, don't worry about it, no big deal. Then you get a nice wash with orange soap that looks like a nice Walgreens cheap instant tan later but it's not Betadine, and I forget what they said it was. Then comes the versed and fentanyl and out go the lights on your memory. However Dr Arata did humor me and started the narration with the entry into my femoral vein. That was the last I recall until I was told to hold my breath while he popped my left jugular. It felt like it was next to my left ear, but later he told me it was by my collar bone. Had to do this on the other side I think, but cannot really recall clearly, thank you Versed. No pain at all with this. I didn’t feel a thing.
The Azygos was a bit painful even though it was supposed just be pressure. At that point I was chirping Ouch Ouch rather loudly so I got another hit of fentanyl.
Suddenly it was all over. I think Dr Arata said everything went just fine and I didn't need a stent in the Azygos vein which was a $2000.00 piece of good news! So back to the hard pre op table and off to post op area. I was told to lie still, keep my legs un-crossed and straight and to just rest. My nurse gave me ice chips a few times, the angel! My mouth was incredibly dry. I think the oxygen does that to a person as well as having nothing serious to drink since last night. So I slept.
After two hours, and the versed mostly worn off, I got to go home. Out came the IV, off came the horrible super sized hospital gown and on went the street cloths. The nurse wouldn't let me get dressed by myself so I wouldn't use my muscles and strain the groin area which could possibly open the clot in the hole in my leg. It was a bit embarrassing but we got ‘er done. Next time I would wear a caftan. Would be easier than sweatpants or jeans and a tee-shirt.
I left with orders to lay low for 24 hours, no strenuous activity and to lead with my non punctured leg going up the stairs to my hotel room. Also left with a script for Pradaxa to prevent clotting which I have to take for 2 weeks and Advil, 3 - 200 mg 3 times a day for 3 days. I haven't taken that much Advil in my life! So I am loaded up on drugs but just for a while, then nothing. BtW, there is one pharmacy, RiteAid, just around the corner from the Renaissance surgery center that keeps Pradaxa in stock specifically for Dr Arata's patients. It's on the corner of Orange and 17 th, I think. Definitely on Orange. Don't trust your retail car’s GPS! Especially with the right turn only female voice.
So how do I feel? In a word, wobbly. I guess the versed is still working its way out of my brain. No great changes right off but if I feel anything it might be that my hands are warmer and a bit less numb. But, I wasn't expecting total recovery in an hour. Let's wait a week or two when the drugs end and see then. Advil tends to make my hands swell and makes me bloated and trashes my stomach and who knows what the Pradaxa will do.
Back at the hotel I climb into my bed with a sandwich and large bottle of water and kind of doze off for the rest of the day. Since I was supposed to lay low, we ordered room service for dinner and made it an early night.
I also started sweating. Sweating all over. Not the same sweating as hot flashes, but full body sweating. This has to be a good thing! Carry out those toxins that have lived in my body for years!
Yay!
More to follow....
Sunday, January 16, 2011
Been a long time and am now headed in new direction...
OK. Am trying to post via my iPad and finding it very tough going.
Here is the teaser. After doing a load of research I am headed off to California in February to be screened for and hopefully treated for CCSVI, or chronic cerebral spinal vascular insufficiency. More information in a day or so when I get scheduled for the event.
Here is the teaser. After doing a load of research I am headed off to California in February to be screened for and hopefully treated for CCSVI, or chronic cerebral spinal vascular insufficiency. More information in a day or so when I get scheduled for the event.
Sunday, May 23, 2010
More Ampyra...
I am giving it another try after a few days off. Now that the weather is in a more stable pattern, I will try taking only one pill a day, starting today, now that my IVIG flu is over, probably about 10 AM so it will last through my working hours and be gone by the time I hit the bed at night. That way I might sleep and gain the benefits of the drug. So many people on Patients like Me forum are having great success with Ampyra.
I have to say, it does help me move better. Legs feel less like concrete pillars and more like legs. Some how I will figure out a way to lessen the nerve pain, but it might take care of itself after a while. I just cannot stand not being able to walk the block, or go out with my family and friends.
Everyone is having a great time in Galveston this weekend and I am stuck at home watching the Astros try to win a game. Unlikely but possible.
Tuesday, May 18, 2010
Ampyra
Well, finally after a month, I finally got the drug, Ampyra. I started taking it on May 5, so its been one week. One week of ups and downs and finally a major down. I am really disappointed and sad that I am having such miserable side effects and that its really making me feel worse than before.
It does help me walk a bit better, but makes all my nerves burn like they are on fire and makes the spasticity worse. I seem to have a good day then a rotten day then a good one then rotten. Today, if you haven't guessed is awful. I cannot get off the recliner and am very discouraged.
Plus the AC died over the weekend so its hot and stuffy but tolerable with numerous fans in the living room which we move to the bedroom at night. I haven't slept well the last week either. The nerve pain wakes me up at 2 or 3 in the morning and I don't sleep well after that. Probably why I am so tired and sad.
So much is happening in the family right now and it makes me so sad to miss the fun because I can hardly move. Prom is this weekend, Graduation next weekend with family coming in to join the celebration. And I cannot do anything to get ready. Physically I am going down hill and hating it.
Just found out my PA at the Neurologist office has left. She was my rock. The other PA left about a month or 6 weeks ago and I loved her too. Now what? I am scared I have no Neurology support and that is unnerving.
My hands hurt. I have to go before they seize up totally. But the magnolias are in bloom!
Saturday, May 1, 2010
May Day!
Wow, I missed the whole month of April! I have been really busy with video projects and we took a short vacation in the RV to Medina so Dennis could ride his motorcycle with the boys.
Weather in Medina was ideal; cold night and warm days, dry air and clear skies! Such a great change from Houston with its muggy weather. :) So glad I went even if it about did my knees in getting in and out of the trailer.
We took the dog and he was a perfect traveler and companion, very undemanding and easy going.
While the boys rode, I worked on my pictures for the tennis team and video project for a friend's daughters graduation. I was busy. I also rested a lot. After the boys got back, Dennis generously took me sight seeing. There were deer, antelope, buffaloes, zebras, and other exotic animals behind tall fences on a few large ranches. The wildflowers were vibrant and plentiful too. Bluebonnets were finished but coreopsis, purple verbena and other yellow flowers took center stage. Gorgeous.
Now back to working frantically on video projects.
Health wise, I missed a session of IVIG and am feeling it. My body hurts all over and I am a bit depressed about that. Stiff and sore is my motto these days. Went to the pain doc who prescribed Trileptal for the pain so today I am giving it a start. Didn't want to do it while I was in the creative phase of the tennis banquet video in case it brain wiped me like Neurotin and Lyrica. Now that I am working only on technical stuff for the DVD, I can handle being a bit brain dead and sleepy. And I am.
If this doesn't help with the pain, I also have a script for Duragesic patch, which is fentynal, a synthetic narcotic like morphine. I hope I don't have to go that route.
This week I have an appt with a Psychologist who only works with chronic illness and pain patients so I hope we can find a decent perspective for me. I am depressed I have to miss all my daughters events outside since I cannot stand the heat and cannot stand for any length of time.
That's enough whining for now. I need to get on with work.
Thursday, March 18, 2010
Quiet but productive week
Not a whole lot happening this week. Lots of flowers blooming since Spring has sprung. The magnolia tree is about finished and the Texas Mt. Laurel with its grape bubble gum smelling flowers is in full bloom. Blue Bonnets are blooming as well. Gorgeous. Louisiana Iris are next with the Indian Hawthorn. Am taking a ton of photos. Most of them are posted on my facebook page.
Gardening in the sun is probably my highlight. Planted out my herb garden with Parsley, Sage, Rosemary and Thyme.. hmmm sounds like a song, if you are old enough to remember it. :)
Also planted dill, fennel, basil, Russian tarragon, and a few hot peppers. I grow and dry the hot peppers then grind them into powder and use in Mexican food dishes and as a counter irritant in hot tea for sore throats. Along with a little ginger to cool the heat.
Tomorrow I go in for the third cervical injection series but have to admit its not changed a thing so far. My hands are still numb and hurting. I might have better mobility in my neck though. I sure hope the lumbar stuff is more effective. This is a tough way to live.
Exercise wise I have walked consistently day after day for 30 minutes at a time. Seems that is as long as I can go, but my speed is increasing and I cover a few more tenths of miles each week. This is some kind of pokey progress, but it keeps the blood flowing and fluids moving and attitude good. I sleep pretty well now.
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