Sunday, July 15, 2018

Florida, Here I come!

Boo Boo’s Fine 2017 Fleece
It’s been a while, well a very long, while since last posting. Years.

Yes, I’m still spinning but at a reduced rate since whatever ails me has ramped up its attack and I’m losing the battle. So I’m off to Tampa for an extended stay to see if a brilliant doctor there can put me back on my feet. Literally. IVIG quit working. Pretty much.

A week into this years TDF and I’m only 1 bobbin into Boo Boo’s Shetland Fleece from 2017. It’s spinning up so fine, both in terms of handle and diameter, that I might have ten thousand yards finished by fall yet still have most of the fiber left in the bin.

Spinning is Zen meditation for me and I’ll all the Zen I can get to see me through whatever treatment awaits me in Florida. Will it be heavy metals, pesticides, Lyme or mold or a combination of the above. I’ll find out Monday July 23rd just in time for my birthday. Wheeee, groan. Later

Wednesday, January 1, 2014

Happy New Year!



I'm not spinning this week but relaxing in the Turks and Caicos islands, on Pine Cay. Most of my family is here and it's sunny, breezy and very warm for this time of year. I found if I stay at my brothers house, on the deck, I can sit in the sun for hours and not over heat.

Caity turns 22 today! At 6:06 Pine Cay time. We'll have a party for her tonight with cake and presents, etc. The Smith family loves to celebrate any occasion, especially birthdays and will pull out all the stops and go hog wild.

Even gone, I've bought the rights to 3 fleeces, one Wensleydale, and two Blue Faced Leicesters. Am working on a used lightly motorized drum carder. After these purchases, I should be finished all acquisitions for 2014. It's going to be a production year!

I've taken a bunch of pictures, especially of the spectacular sunsets here on the island and the picture in this post is one of them.

Sunday, December 15, 2013

 Merry Christmas and Happy New Year!

Here is a collection, er ah playlist, of YouTube Videos on Beginning Spindle Spinning with top whorl spindles.

I've given several spindle kits from Yarnshine on Etsy to my best friends. I hope they will take up the hobby so I have real life friends to share my hobby with. No offense to my most excellent online fiber friends! Cheers to y'all too.



I'll be working hard on my Fiber Arts in 2014 and will share some cool yarns and home made videos with you as the year turns 14.

Cheers,
JJ

Sunday, June 23, 2013

On to the Tour de Fleece

For my friends who have missed my blogging lately, I gave up whining about how crappy I feel from my autoimmune issues and have jumped back into fiber arts stuff after a 20 year layoff to raise Caity James.

So from now on, unless someone asks me about it, I mostly likely won't chat about MS, Transverse Myelitis, Thyroid Problems or Chronic Pain. Yes I have them, but they don't have me!

Meet "Tiger Woods" my new Hansen Crafts eMiniSpinner!
This 5 pound beauty spins like a dream and is made in America
of solid tigerwood. Hence its name.

Expect to see pictures and dialog about prepping raw fleece from sheep and alpaca, spinning wool, enjoying my late nights as a vampyre working on my hobby when its quiet and peaceful with no phone ringing and no text messages or email demanding attention.

Starting June 29th and continuing through July 21st, I'll be participating in Ravelry.com's Tour de Fleece for the first time. During the Tour de France bike race, we spin like crazy. We have teams and challenges and prizes too. I am looking forward to spinning as much during this time period as I normally would for the better part of a year. Its a great feeling to be part of something again and even have a fun competition to push me off the starting line and back into the fray.

Tuesday, March 8, 2011

Pictures are up from California Trip

PCH headed north to Santa Monica
Well I was feeling better and better but today the weather is about to make a major change and my skin is just crawling. Ugh. The rain should be here any moment. Then the temperature will drop. The tree pollen is high too.

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.

View from room at Hyatt
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....

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.

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.

Tuesday, March 9, 2010

2nd Cervical Injection


It was a bit of a chore to be somewhere at 10 AM without eating breakfast, forgoing coffee, and not drinking a good liter of water since getting up at 7! My poor stomach was rumbling and complaining the whole time!

And I had to wait an hour to be treated as the pain clinic was backed up. I guess an early patient had some issues. I bet it was the lady I saw stagger out with dilated pupils and not talking coherently. I was the last one of the day.

This time the needle stick in the hand went well and doesn't appear to have blown the vein. I hate sticks in the hand. Hands, especially my numb ones, are really sensitive. The nurse did a grand job though. :) Maybe because she let the alcohol dry well first. :0

The procedure only takes about 10 minutes and I didn't feel anything till I got home and my neck where the Doctor went in with the needle, around my T1-T2 vertebra, is sore this time. Last time, I had no issues after. Today I have a bit of pain at the site and have ice on it. That helps.

I came home, ate both my breakfast and my lunch and crashed for 2 hours in my bed. Phew! I got knocked out hard today. Drank my coffee at 3 pm. It has helped the very slight headache lurking in the back of my head.

On a good note, the sun is out and the high reached 78 degrees here! Wow. I want to go for a walk but the post procedure instructions say rest for the rest of the day and today I feel like I should. Dang, well, hopefully tomorrow will be as pretty and nice as today. The weather report says we could have rain in the morning. Please be lying!

Our magnolia is spectacular. I would estimate about 2-3 more days before full bloom, so I better get photos as quickly as I can. I love this tree. Each year it faithfully provides a splash of beauty in the early spring when nothing else is pretty, before the trees leaf out too. Each year it grows bigger regardless of the weather during the year. The saucer magnolia, given good drainage, is a true trooper.

Friday, March 5, 2010

Neck (Cervical) Injections


Well, I did it on Monday and other than a painful needle stick in the hand for the conscious sedation, I didn't feel a thing or feel bad afterward. Now that its been the better part of a week since I got stuck, I do think I have a bit more mobility and less pain in my neck.

I have recovered from last weeks IViG pretty well even while fighting off a cold and sinus issues from very heavy week of tree pollen. I have walked twice this week over thirty minutes... actually 32 each time and have gone farther with less pain and fatigue than in weeks past. Usually, I wonder if I will be able to make it back from my walk for the last 1/4 mile or so but have spent these last few days wondering if I should try for another loop around the block. So progress is being made, step by step, stride by stride. The UPS delivery guy, fondly refered to as James Brown, commented that he would never know I had any walking issue by watching me pole and hoof it around the hood. That was a nice compliment!

The flowers are starting to bloom around the hood so I take my old point and shoot nikon on my walks. The nikon is small and light enough to fit in my pocket so it doesn't have to hang around my neck! So now I carry poles, camera, pedometer, and cell phone. I should wear my motorcycle fanny pack to carry all the stuff! Actually, this photo was taken with the little Canon 20D.

Next week is Cervical injections #2 in series and of course IViG. Ugh. That means I will be down for the count on the weekend. Oh well, not much happens here on weekends since my dear daughter is 18 and off with her friends, not needing Mom for much.

Had a Neurologist appt Tuesday and of course she lambasted me for not taking enough Valium. I did tell her I did up it from 2.5 mg a day to 3.75. She just rolled her eyes. LOL. I don't want to be on 80 mg a day like a lot of folks since I fully intend to get better and get off these drugs.

She had called the company that makes the "bird poison" Ampyra, and they are not marketing it yet to the neuros. But as she has at least one other MS person clamoring for it, she will keep on the company to get a rep out as soon as its available. Interesting. Well maybe next month for that.

Hopefully with that drug and the injections in my neck, lower back and butt (piriformis muscle) I will get back to more normal life and be able to walk better and best of all, handle the heat when it comes this summer. Fingers Crossed!

Sunday, February 28, 2010

IVIG Blues again...

Spring is coming... The pears are budding up!

I continue to suffer terribly for three days after the infusions, whether its 2 days or 3. This time I sailed through each treatment day and kept up with my walking and exercising. It really hit me Friday morning with fatigue, pain and stiffness. I did manage to wimp my way through Pilates training then collapsed and slept most of the day. I had been walking 30 minutes before the treatment which was so good for me and was building up weight and stamina and some muscle.

Saturday I full expected to perk up in the afternoon, but had to drag myself around the block. It took everything I had to make it in one piece without calling for assistance. How weak is that? i am trying so hard to improve but its two steps forward and one step back. Not exercising will cost me some muscle and kill my appetite. I still need to gain about 10 lbs. At least I have put on 5.

Sunday today. I woke up congested and feeling fluey like I was getting Dennis' cold. I kept trying to shake it off and do things, and failed. I sure hate losing 3 days with IVIG Flu to this treatment each time, 6 full days a month, but what else can I do?

This afternoon the sun came out but the temps never got up to the mid 60's like they said, instead hanging out around the 60 degree mark. With the wind, it feels like about 45! I am skipping the walk today. I just don't see it doing me much good. I did do my weight lifting and as much stretching as I could but non of it was comfortable. Advil didn't touch anything but the headache. At least that part is over.

Tomorrow I go for the first of the cervical injections if I wake up feeling semi human. I hope I am not too sick to go, because this course of treatment might really help the pain in my hands. Then the lumbar for the back, legs and feet. Not going to be a fun month but hopefully it will all be worth it.

Tuesday I see the neurologist again. I hope she has some information on Ampyra.

MS marches on. Not fun. Not at all.

Sunday, February 14, 2010

IViG Flu - Valentine's Day


I am a lot better today and think the IViG side effects are about over. Phew! Yesterday was so depressing and horrible. Today I woke up with a headache but an advil and a 25 minute walk took care of that!

It seems like the bad stuff lasts for 3 days regardless of how many days I do the infusions. Well maybe it is worse with the 3 and 4 day a month at a time stuff. I will have to be a bit more diligent in recording the side effects as I go along. I have next week then have the 2 day treatment again on the 24th and 25th. We will see how that goes before I make a decision on which plan I like better.

The sun came out today, Valentine's Day, which makes me feel better no matter whats going on. It is also about 70 degrees today as well so I could walk in sandals and short sleeve shirt instead of bundling up in a parka, gloves and a hat! Yay!

Saturday, February 13, 2010

Incredibly Depressed


As the weather continues to be gloomy, cold and rainy, I am feeling so depressed today. My family is out of town this weekend so I am alone at home.

I hurt all over and have an IViG hangover as I call it. Only had 2 days of IViG this time and will repeat in 2 weeks. I figured the side effects would be lighter and easier but it seems not to be true. Or this batch of the treatment was stronger or different. I escaped the bad headache but feel so fatigued and tired and cannot shake it.

So I sit in my recliner and watch TV and cry every so often. I wonder if I will ever feel well again.
What a drag. Maybe the sun will come out this afternoon so I can walk, or rather stumble, around the block.

I am hoping the pain doc can relieve some of the pain in my arms and hands and neck. Then we will go on to the lower back. Without some of this pain I am sure I would be less depressed.

And Ampyra will be available in March so hopefully my Neuro will let me try it and that too will help with fatigue and spasticity. There is hope but today I just don't feel it at all.

So I will wrap up in my blanket and keep warm and watch the olympics when they come on.

Monday, February 8, 2010

Neuro Appt and more....

February 1 I had another appt with the PA at the Neuro's office. All my tests were fine and I got a new prescription for wellbutrin to see if that helps my pain, energy and mood.

I just love the PA's as they take so much time testing and talking and such.

I tried the wellbutrin for 2 days and didn't like the way it made me feel. I will try it again in a few weeks. I want to be as stable as possible for my appt tomorrow with the pain doc.

Stopped the Elavil at night in anticipation of starting the Wellbutrin. I didn't realize how much the Elavil helped till I stopped it. Slowly the pain and more stiffness crept back in and I felt more discouraged than normal. Of course that could be the IViG wearing off... So I started back on the Elavil at 5 mg at bedtime. I also restarted the LDN and I have been sleeping really well for past few nights. Had some rough dreams due to the LDN but they will taper off in a week or so.

I did 2 mg for a week then upped to 3 mg and have not noticed anymore stiffness than normal. I am just rigid as can be regardless how long or craftily I stretch.

Did acupuncture Saturday afternoon and its helped a lot. My shoulders, trapezius muscles, are locked up tight. Thats where I carry my stress. I hope the pain doc can recognize this and do something about it. That and my danged sacroiliac joint area. Oh what I would do for a pain free day. I know what I would do... Just overdo it and be back where I started.

Lifted weights several times over the last week and it helps a lot. My danged hands are getting weaker and weaker though and that bugs me.

Later...

Sunday, January 24, 2010

Ampyra-Fampridine SR - Finally approved!

I cannot wait! This drug, originating as a bird poison in Russia(?) has finally been approved by the FDA.

The majority of persons taking its precursor, 4-AP, have had almost wondrous improvements in spasticity, walking speed, pain, heat intolerance, and fatigue. I cannot wait. I don't care how much it costs, or if my insurance will help with it, but for less spasticity and stiffness, I am all for it. I will take a second on my house, sell my motorcycle (not really) and option my second born child (Only have one and she is not for sale) to get this drug. This gives me more hope than I have had in a long long time. Well only 20 months but it seems like forever.

Bring it on! Ampyra. Be the answer to my pain and stiffness!

Thursday, January 14, 2010

IViG the day after

Ouch! I only thought I was going to get off easy this month. Not so.
Today I woke up with stomach ache, creeping sinus crap and that headache is starting up too. I have hydrate and keep telling myself "Its only temporary!"

IViG also seems to make some of my MS symptoms worse for a day or so. My numb hands are about useless today. (Thank god for the backspace key and spell check!) Nerve pain is horrible in hands and feet and my chest feels full and congested. Hydrate! I had to take a half a baclofen for the muscle spasms too. Oh well, I just thought I was done with Baclofen.

So its a sofa day today with as little typing as I can get by with. More later.
My family is off to London. Sniff, Sob, Sigh. Ah to enjoy the peace and quiet.

Tuesday, January 12, 2010

An easier round of IViG?

Well, I crashed and burned about 4 days before this current round of treatment. My good energy just petered out leaving me depressed and restless on the recliner. Its amazing how fast the stuff rejuvenates me. After one day, I walked 25 minutes and sleep like a baby.

Today, the second day, I felt a little depleted after the infusion, but I did not go as well hydrated or a full as yesterday. I did take short nap when I got home that did wonders refreshing me. I walked farther today than I have in almost 18 months! 35 minutes and over a mile and didn't even come unglued when I got home. Must be a great batch of IViG.

Tomorrow is the last day thank goodness and let's keep fingers crossed I can maintain my energy and avoid the IViG flu. Since I am getting a higher dose each day, I kind of expected to be much more wiped out than I am. Maybe I will avoid the crash altogether!

Caity and Dennis head out for London on thursday about noon to make a 4 PM flight. My sister in law will stay with me and my mother in law will be around as well as my best friend, Deb. While the cats away.... let's hope we can get the bedroom shades made. Its getting lighter in the mornings and harder to stay asleep.

I have pretty much weaned off the baclofen, finding I really don't benefit from it much at all, but then I didn't take much of a dose at all. Just another brain wipe drug. Sigh. Way over medicated but now feel better with just my morning 2.5 mg Valium and 2.5 mg Elavil at night. 5 HTP helps me sleep and I believe my fibromyalgia is better so the thyroid must be better too!

Am going to change the IViG to 2 day twice a month. All my infusion buddies swear thats the best way to do it to keep energy up and IViG flu down. :) Thanks goodness I am such a light weight I can run it in 2.5 hours. It will be about 2 hours when I change 2 twice a month. Yay!

Now if that danged cardinal will just shut up and quit pecking the window with his beak at daybreak. Sleep is what I need most.