Wednesday, December 31, 2008

Happy New Year

A New Year looms a mere hours away. We all look to the New Year with hope and optimism, hoping that the challenges we faced over the past year won't be repeated. While 2008 was filled with challenges for me, more than are even mentioned here on the blog, it WAS a good year. I learned a lot. I learned how strong MS is, but I learned that I am stronger. With each challenge that MS threw at me I learned new coping skills and how unimportant some things really are. I was also blessed to be married to my best friend and life partner. A man who is so special words couldn't begin to convey everything I feel. This is a man who has stood beside me through everything MS threw at me this year. It is a rare man OR woman who would do that. I don't know what I ever did to be blessed with such a man. For him I am truly thankful. I have wonderful friends that have stood by me, and some who have chosen to fall away. While I miss those who chose to fall away, I realize that they weren't friends to begin with. Adversity tends to make "fair weather friends" disappear. The positive is that adversity also tends to to bring new friends into your life as well. Friends you know will now be there through whatever curves life throws in my life, as I will be there for their challenges. I can't even begin to express my thankfulness for my family. Thank God for family. Where would we be without our families?

Monday, December 29, 2008

After all what IS a perfect day??

Today was a good day. My energy level stayed pretty high (for me) all day. If I hadn't had the stiff right shoulder and neck it would have been a perfect day! It's amazing how my definition of a "perfect day" has changed since MS entered my life. Previously, a perfect day would have been hitting the malls for an all day shopping excursion with a girlfriend or a day spent with my husband taking a long drive and stopping at the beach for a long walk. Now the "perfect day" is simply staying upright on my own two feet. What a difference MS makes. Shots, pills, infusions and "adaptive equipment" are now part of our daily lives. Thank goodness we have them all. I can't imagine where I'd be without the steroid infusions, the Rebif injections or the Neurontin. Not the mention the STS RX machine I use several times each day. I know that my pain level would be much worse than it is now. I rarely have any neuropathy in my legs and feet. In fact when i have tingling now I'm always surprised. If you haven't had a chance to watch the video on the blog, please do. It's very informative and explain how and why the machine and protocols work.

Our Skateboarding Queen







Petunia is a joy to have. You see her with he purple skateboard. She is starting to get the hang of it and isn't happy when she runs out of space in the family room. When that happens she looks at me ask if asking to move the wall in her way! She's also VERY verbal. If I correct her she has NO problem telling me EXACTLY how she feels about it. It's like having a toddler that goes to a teenager in 2 seconds! She's really a good girl though we will be glad when the puppy teeth are gone. They HURT! Oh, and no big problems related to the fall I took yesterday. A stiff neck and right shoulder. Nothing that some IBU won't take care of!

Sunday, December 28, 2008

A reminder not to get cocky...that was painful..and messy

Just when you think to yourself...HAH....I've got this thing (MS) back under control. Over the past few days I've noticed an increase in my fatigue level and balance issues (as we all know stress causes flareups and even though it was GOOD stress the holidays are still stressful). I use my wheelchair when I feel I need to but try to use the walker or feel around walls as much as possible. Well, today I decided (even being wobbly) in my infinite wisdom to go outside on the back patio on just my own two feet. NOT a wise decision. First, let me describe the backyard. We had a wonderful patio poured in June, but the yard is not landscaped. In other words, it's a mud pit. Anyway, I was out side with hubby and Petunia (who by the way is learning to skateboard) when all of a sudden, you guessed it the balance went. So of course, I'm trying to take steps to catch my balance (VERY unsuccessfully I may add). I end up going a&* over elbow off the patio and land flat on my back in a combination of frozen water and mud. It happened so fast my husband couldn't reach me in time. My glasses and everything else not zipped up or buttoned went flying. I recall just lying there, Petunia jumping on my stomach thinking I wanted to play. I don't remember getting up. The next thing I remember is kneeling on the patio, mud dripping off me everywhere and telling my husband to just leave me there. I'm not sure if that statement was made because I was afraid to move or I was being entertained by the shapes the mud made as it splattered on the patio. After about 5 minutes, I attempted to start moving body parts. One part at a time. Mark helped me up and walked me into the house (fortunately I don't have carpeting in the kitchen area), mud still dripping. The end result of my inability to stay in the chair when I need to be there is a bruised left wrist and ankle, stiff shoulders and a headache. I was lucky. My husband was gracious enough NOT to laugh. Lesson learned......don't be so cocky and when I need to be in the chair I need to accept it.

Saturday, December 27, 2008

New Video


Well, Christmas is now past and the New Year looms ahead. I wonder what 2009 will bring. 2008 sure had it's suprises. Both wonderful and terrible. I posted a new video on the blog. It's an explanation about the treatment's I receive and the machine I use. I'm the first woman talking on the video and my sister-in-law is the second woman. She's the wonderful lady who referred me to the clinic for treatment. I will forever be greatful for her! If you have any questions after you view the video feel free to post a comment and I'll answer your questions the best I can! I hope everyone had a wonderful Christmas!

Tuesday, December 23, 2008

Twas 2 days before Christmas......

and all through the house 1 creature was stirring and she wasn't a mouse....It was bloody me! I've been UP since 2:30 this morning. I really shouldn't complain. I went to bed around 10 and was asleep by 10:15. So I DID get a little over 4 hours of solid sleep. For a chronic insomniac that's a pretty rare occurrence. I usually sleep in fits. An hour here, 30 minutes there and toss and turn all night. (My poor husband can attest to that). I would have slept longer except that Princess Petunia figured out how to get through the gate that closed her off in the family room and visit me. Bounding at the side of the bed. Of course, my first thought can't be typed here. I figured I would find major damage somewhere. After all an 11 week old puppy who already weighs 21.7 pounds (we were in the vets yesterday to have Petunia treated for an allergic reaction. However, that's another blog and she's fine now), can easily bring a Christmas tree down. I got dressed (figuring I was up, why not) and began the room to room search. To my everlasting shock and amazement the ONLY thing she destroyed was one of Maggie's cat toys that hangs from the handle of the closet door. (I'm sure Maggie isn't happy about that). Now BOTH animals are sound asleep and I'm up. Drinking my EARLY morning coffee and actually enjoying the quiet time. I feel good. A little achy from the Rebif but not too bad. No muscle twitches or spasms, no funky aches and pains. I've noticed with the increased Neurontin dose my balance is more unsteady, but I'm sure it will resolve as my body adjusts to the new dosage. I'm walking more and more with the walker, but won't risk going out and about without the chair. My balance and fatigue levels are still too unpredictable. Well, I think I'm going to try to find something on TV other than infomercials. Type atcha later!

Monday, December 22, 2008

It's finally here...



Christmas week. Where did the time go? It seems there is so much to do at the last minute. Fortunately, all our gifts have been wrapped, shipped and sent on their way. Mark picked up a carrier for our Princess Petunia Her Royal Highness this morning. (Yes, she has already assumed her royal airs). The weather here has changed once again. It poured rain this morning. All the beautiful snow is just about gone :( It rained for a few hours and has now stopped. Now we wait to see if the temperature drops and snow comes tonight. I'm feeling pretty good. No more spasms since I started the increased dose of Neurontin. I just hope it works permanently. Tonight is shot night so I've already started taking the IBU. It seems all my days are measured in "It's shot not", or it's not. I'm following the research they are doing on the oral treatment. It goes to the FDA for approval next year. I can't wait until it's approved. Of course, it will also depend on the side effects of it. I can't imagine the side effects of it would be any worse than the Rebif side effects are for me.

Sunday, December 21, 2008

Medication adjustments

Went and saw my MD yesterday because of the return of the spasticity. She adjusted my Neurontin to my dose is now at 2400mg/day. That's the max dose. I started the increased dose yesterday at bedtime. I have to say it put me out pretty quickly, but I still followed my normal wake sleep cycle. Meaning little sleep and mostly awake. However, NO muscle spasms. Today I'm tired, but that could be related to the increased dosage. It will take a few days for my body to adjust. Now on to a much more pleasant topic: Petunia. She's awesome. We are really enjoying her and it's great to have a dog in the house again. She is very smart. She actually woke me up last night (I had fallen asleep on my recliner) to go outside and today she came and got me then went to the door to let me know. She slept secured in the family room and had NO accidents! Of course I realize that as an 11 week old puppy accidents will happen! We had her weighed today and she weighs 21.4 pounds. AT 11 WEEKS! Yikes shes going to be a BIG girl. We took her out in the neighborhood today to meet some of the neighbors. (We want her to be well socialized). She's doing well with the wheelchair and stays a healthy distance from it when we're walking. (Of course Mark is holding her leash until she is a bit bigger and has had some training). Hope everyone is doing well!

Christmas present....

My husband gave me the BEST Christmas gift yesterday. An 11 week old Oldde English Bulldogge. (Not a regular English Bulldog). She's just perfect. We've named her Petunia. She's into everything and has the "Bully" personality. Meaning she loves EVERYONE. Every time you leave the room and comes back she greats you like she hasn't seen you on a month and wonders where the heck you've been! She's great for the heart.


Friday, December 19, 2008

My friend is back....




good 'ol freaking muscle spasticity. It never really totally left, but it wasn't as severe or painful. I would watch the muscles in my legs and feet twitch and jump and my toes move all on their own. Then, on Wednesday I had a bad spasm in my left bicep. I mean a hold my breathe till I was blue, arm drawn up, cussed a blue streak spasm. Fortunately, it only lasted about 5 minutes (which felt like 5 hours) and hasn't returned (I'm knocking on my head). It's very rare for me to have spasticity in my arms, but it's ugly when I do. Since then, the spasticity in my legs and feet has returned in full force. PAINFULLY so. I can't figure out why. (Heck, don't we all wish we could figure out why we have flareups and all the other wonderful things we deal with)! I'm taking the Neurontin and Clonazapam without fail, I'm running my programs and doing everything I'm supposed to be doing. THIS is the most frustrating part, for me, with dealing with MS. The WHY'S. If I could figure out a trigger for the muscle spasms it sure would be something I'd avoid. Besides the pain the spasms can be immobilizing. Can't even attempt to stand with my feet contorted. When the spasms stop I'm afraid to move for fear another will start. It's enough to make one kinda grouchy!

Thursday, December 18, 2008

Enough snow!




Boy, did we get snow! Started on Sunday and pretty much finally stopped this morning. My poor husband is stuck in the valley as all the major highways he could take to get here are closed due to ice and snow. They have been closed for 2 days now! It is absolutely beautiful though. Everything is so crisp and clean. NOW it feels like Christmas! Today the skies are a beautiful blue. The high today was 35. Positively balmy!



This is the view from my front door. My husband had shoveled the front walk Tuesday before he left. What I found amazing is that even the kids weren't out playing in the snow today. Too cold!


Wednesday, December 17, 2008

Optic Neuritis and DTI

There was an interesting article published yesterday in Science Daily: http://www.sciencedaily.com/releases/2008/12/081216201416.htm The article discusses diffusion tensor imaging (DTI) and it's use in actually predicting the course of optical neuritis in MS. Pretty interesting reading.

Tuesday, December 16, 2008

It is what it is

Looks like this night has the potential to be another insomnia filled night. UGH. Of course, there is never anything good on TV on the nights you can't sleep. Thank goodness for Tivo. It also means I'll be surfing the net to see if I can find any more promising research information out there. It's hard to believe that Christmas is less than 10 days away. I'm all done with shopping thank goodness. Now it's all the wrapping etc. that's let to be done. Then traveling up north to be with some of the family. Hard to believe another year is almost done. Been a challenging one, but a joyful one as well. I've learned a lot about the ongoing MS research out there. Hopefully, we'll see some big strides in MS treatment over the next decade. I'd love to see an oral med on the market (as long as it had minimal side effects). I had having to stick myself with a needle three times a week. It wouldn't be so bad if I didn't feel so crummy the day after each injection. Tomorrow I'm just going to take it easy. I wasn't feeling so great yesterday with the MS. I was definitely having an "off" day. Balance was off and my fatigue level was high. Today wasn't much better. I didn't even answer my emails today, just forwarded a few "funnies". I "feel" fine. Just very tired. All part of the MS. At least I listen to my body now and when it's tired I don't try and fight it. It is what it is. If I find anything interesting as I google tonight, I'll post the info here tomorrow.

Other MS information Sources Links and contact Numbers

Information also is available from the following organizations:
Multiple Sclerosis Association of America706 Haddonfield Road Cherry Hill, NJ 08002 webmaster@msaa.com http://www.msassociation.org Tel: 856-488-4500 800-532-7667Fax: 856-661-9797 National, non-profit organization dedicated to enhancing the quality of life for those affected by multiple sclerosis. MSAA provides ongoing support and direct services to individuals with MS and their families and works to promote a greater understanding of the needs and challenges of those who face physical obstacles.
Multiple Sclerosis Foundation 6350 North Andrews Avenue Ft. Lauderdale, FL 33309-2130 support@msfocus.org http://www.msfocus.org Tel: 954-776-6805 888-MSFOCUS (673-6287)Fax: 954-351-0630 Dedicated to helping people with MS, the Multiple Sclerosis Foundation offers a wide array of free services including: national toll-free support, educational programs, home care services, support groups, assistive technology programs, publications, a comprehensive website, and more programs to improve the quality of life for those affected by MS.
Accelerated Cure Project for Multiple Sclerosis 300 Fifth Avenue Waltham, MA 02451info-ninds08@acceleratedcure.com http://www.acceleratedcure.org Tel: 781-487-0008Fax: 781-487-0009 National nonprofit organization dedicated to the creation and execution of a plan to cure MS by determining its causes. Developing a multi-disciplinary blood, tissue, and data bank.
National Multiple Sclerosis Society733 Third Avenue 3rd FloorNew York, NY 10017-3288 nat@nmss.org http://www.nationalmssociety.org Tel: 212-986-3240 800-344-4867 (FIGHTMS) Fax: 212-986-7981Funds research, helps families stay together, provides accurate and up-to-date information, helps with employment issues, offers free counseling, runs self-help groups, advocates for people with disabilities, and provides referrals to medical professionals.
American Autoimmune Related Diseases Association 22100 Gratiot Avenue East pointe East Detroit, MI 48201-2227 aarda@aarda.org http://www.aarda.org Tel: 586-776-3900 800-598-4668 Fax: 586-776-3903 National organization that works to alleviate suffering and the socioeconomic impact of autoimmunity. Dedicated to the eradication of autoimmune diseases through fostering and facilitating collaboration in the areas of education, research, and patient services.
National Rehabilitation Information Center (NARIC)4200 Forbes Boulevard Suite 202 Lanham, MD 20706-4829naricinfo@heitechservices.com http://www.naric.com Tel: 301-459-5900/301-459-5984 (TTY) 800-346-2742Fax: 301-562-2401
Clearinghouse on Disability Information Special Education & Rehabilitative Services Communications & Customer Service Team550 12th Street, SW, Rm. 5133Washington, DC 20202-2550http://www.ed.gov/about/offices/list/osersTel: 202-245-7307 202-205-5637 National Ataxia Foundation (NAF)2600 Fernbrook Lane North Suite 119Minneapolis, MN 55447-4752naf@ataxia.org http://www.ataxia.org Tel: 763-553-0020Fax: 763-553-0167Encourages and supports research into the hereditary ataxia's, a group of chronic and progressive neurological disorders affecting coordination. Sponsors chapters and support groups throughout the U.S.A. and Canada. Publishes a quarterly newsletter and educational literature on the various forms of ataxia.
Well Spouse Association63 West Main Street Suite H Freehold, NJ 07728info@wellspouse.org http://www.wellspouse.org Tel: 800-838-0879 732-577-8899Fax: 732-577-8644International non-profit organization whose mission is to provide emotional support to, raise consciousness about, and advocate for the spouses/partners of the chronically ill and/or disabled.

Monday, December 15, 2008

MS article in LA Times-Fingolimod-alemtuzumab-Rituximab

The Los Angeles Times has a great article in today's paper. Here is the online link: http://www.latimes.com/features/health/la-he-ms15-2008dec15,0,7761919.story It contains some great information regarding new drugs on the horizon. If you find any other information or links. Let me know. I'll post them here.

SNOW!!!

Finally! Yipee! I woke this morning to big fat flakes falls on a ground that already had a good 2 inches on the ground! NOW it feels like Christmas time! Hubby is taking pictures that I'll post on here later :) No romping in the snow for me this year, so I'll be content to watch it fall from the warmth of my family room. Of course, there is a bit of sadness mixed in with the joy. Valor LOVED the snow. He would run around like a crazy dog, biting the snow, rolling in it and generally causing much laughter. So, I'll raise my coffee in a silent toast to Valor as I watch the snow fall. Then drive my cat, Maggie, crazy with her new laser light!

Sunday, December 14, 2008

Baking..put off for another day

Today was supposed to be the official opening day of my holiday baking season. That is, until hubby dripped cheese in the bottom of the oven cooking his pizza last night. Now, today is the official oven cleaning day. Fortunately I have a Kitchen Aide double oven with automatic cleaning, but it takes 3.5 hours! (Of course it does warm up the house nicely)! So....tomorrow will be opening day for baking. On the baking menu is pecan pie, custard pie and fruit tarts. I'll add other goodies as the week progresses. Hope your holiday baking is off to a better start than mine!

Saturday, December 13, 2008

FTY720 (fingolimod) Research information (Oral Drug)

This was forwarded to me via the MS Society. I wasnted to share it as I think it's great news. This means we could possibly see FDA approval for an ORAL drug soon!

December 12, 2008

Oral FTY720 (Fingolimod) Reduced Relapse Rate More Effectively Than Avonex in Initial Results of One-Year Study in Relapsing-Remitting MS

The experimental oral drug FTY720 (fingolimod, Novartis) reduced relapses significantly more than Avonex® (interferon beta-1a, Biogen Idec) in a one-year study involving 1,292 people with relapsing-remitting MS. Serious adverse events in the FTY720 group included two deaths from herpes infections and seven cases of localized skin cancer. These initial results are reported in a press release from Novartis, which notes that analysis of these data is ongoing and that two other large-scale, phase 3 trials of the drug are ongoing. The company expects to submit an application to the FDA for approval by the end of 2009.

Background: FTY720 binds to a docking site (sphingosine-1-phosphate receptor, or S1P receptor) on immune cells, including T cells and B cells, that have been implicated in causing nervous system damage in MS. The drug appears to induce immune cells to remain in lymph nodes, where they can do little harm, preventing them from migrating into the brain and spinal cord. Promising phase 2 study results were published by Ludwig Kappos, MD (University Hospital, Basel, Switzerland) and colleagues in The New England Journal of Medicine (2006;355(11):1124-1139).

This one-year, phase 3 study – also known as TRANSFORMS – is one of three studies of FTY720 in relapsing-remitting MS. The company says that it expects data from two other studies – FREEDOMS and FREEDOMS II (two-year, placebo-controlled, Phase III studies that are assessing the impact of FTY720 on reducing relapses and slowing the progression of disability) – to be available in 2009. Another study, INFORMS, is evaluating the effectiveness of this drug in primary-progressive MS.

This Study: Investigators worldwide recruited 1292 people with relapsing-remitting MS. Participants were randomly assigned to receive either one of two doses (.5 mg/day FTY720 or 1.25 mg/day FTY720), or Avonex (30 mcg/week injected intramuscularly) for 12 months. The study’s primary endpoint was to compare the effectiveness of treatments in reducing the relapse rate. Secondary endpoints included comparing the proportion of relapse-free patients, drug safety and tolerability, and disease activity as observed on MRI scans. There was no assessment of neurologic disability and no evaluation of efficacy beyond one year.

The company’s press release reports on the primary outcome and drug safety and tolerability. The annualized relapse rate in those taking the lower dose of FTY720 was 0.16, compared to 0.33 in those on Avonex (a comparative reduction of 52%). Those taking the higher dose of FTY720 experienced an annualized relapse rate of 0.20 (a reduction of 38% compared with Avonex). No statistically significant difference was seen between the two FTY720 doses.

Safety: The proportion of participants discontinuing treatment during the study was 10% in the FTY720 0.5 mg group, 15% in the FTY720 1.25 mg group, and 12% in the Avonex group.

Two deaths from herpes infections occurred in the group taking the higher dose of FTY720. Seven cases of localized skin cancer occurred in the FTY720 groups, including three melanomas, and one (squamous cell carcinoma) in the Avonex group. According to the company, all skin lesions were successfully removed. .Eight cases of macular edema (swelling of the center of the retina) were seen in the FTY720 groups and one in the Avonex group. The additional clinical studies underway should help clarify whether these events are related to the experimental treatment.

The most commonly reported adverse events were headache, nasal inflammation, and fatigue, which occurred in more than 10% of participants in all three groups. Influenza-like symptoms occurred in 4% of the FTY720 groups and in 37% of the Avonex group.

Conclusion: The company is continuing to analyze the data and plans both to report fully at a scientific meeting in 2009 and to submit an application for FDA approval by the end of 2009. “It is good to see this oral drug advance through the MS pipeline,” says John Richert, MD, executive vice president for research & clinical programs at the National MS Society. “ We are eager to see longer term safety and efficacy data that also include the effects of FTY720 on measures of disability.”

-- Research and Clinical Programs Department

Thursday, December 11, 2008

Web Site Found

I'm always surfing the internet to find the latest information regarding research and treatment of MS. I stumbled on this site this afternoon: http://clinicaltrials.gov/ct2/results?term=Multiple%20Sclerosis This site is a list of all know clinical trials recruiting, ongoing or closed. The site isn't dedicated just to MS. It's run by the U.S. National Instutes of Health. I found it pretty informative. I'll also be adding a direct link to the site to my link column.

Snow watch

Geesh even South Eastern Texas has had snow! Amazing. We're in the mountains at 4000 feet and not a flurry has arrived. It doesn't seem like the Christmas season without at least a light snow! It's been cold enough to snow with gray skies thrown in to give false hope. Still waiting. . I love the cool temperatures of this time of year. It's so much easier on the MS. No worries about heat related flare-ups. Of course, with the holidays stress management becomes even more important. I fully intend to start baking next week. I'll be careful not to push too hard and limit my baking to the morning hours. That way I'll be conserving my energy levels. Of course, then the challenge becomes NOT eating what I bake in the afternoon! Our round of Christmas parties start tomorrow evening. I would love to have a gathering here, but I don't think my energy level will allow me too. Not this year anyway. While I am continuing to see improvement using the protocols, it seems my day to day energy level is taking it's time bouncing back. My balance is better. Not perfect, but better. My body still requires the protocols being run every 3 hours to keep pain under control which can be a challenge when your trying to plan your daily activities. (I'm running them as I type). What keeps me from getting frustrated is looking back to where I was June-November and seeing where I am now.

Wednesday, December 10, 2008

What is this world coming to?

I've deliberately kept politics off my blog. I don't discuss world events here either. I wanted to keep the blog simple. Just about MS and my journey with it. However, the more I watch the news the more disgusted I find myself becoming. What the heck is wrong with us as a human race? Some of us believe our religion makes us better that others, which gives us the right to then MURDER those of different faiths and races. CEO's believe that they are entitled to bailout money from the government and be able to keep their jobs. While it is their poor management decisions that drove the companies they were leading into bankruptcy and jeopardize hundreds of thousands of jobs. (Wish I could get a bail out. I don't see my local Congressman jumping in to help me with my student loans and other debt now that I'm unable to work)! Others believe they have the right to take someone else's property, just because it's there. Kids believe that taking a gun to school and killing those who make fun if them, or they simply don't like them is the right way to deal with their problems. Something is definitely wrong with the world. Perhaps the biggest problem is why we tolerate all this. We've become so "Politically correct" and afraid of offending that we turn a blind eye to the changes in society that brought us to where we are today. Now all we do is "whine" about things, but no one has the good old fashioned "gumption" to stand up and SPEAK up. Heck look at all the voters who cast their votes for Senators, Congressmen, Mayors and Governors in recent years who were indicted for corruption or under investigation for other criminal activity DURING the elections! We allowed discipline to be taken out of the classroom, we took away the parents right to discipline their children (there is a HUGE difference between discipline and abuse). I remember when I was a kid, if a neighbor saw us misbehaving they would yell at us AND rat us out to our parents. Geesh. We'd get into trouble TWICE. Now the neighbors are afraid to say anything because of the parental mindset of "who are you to correct my child". (Heck the PARENTS don't even correct them). Doesn't matter that your kid was throwing rocks at passing cars and I told him/her to knock it off. I'm the bad guy. I think I'm going to turn my TV off for the rest of the year! Tomorrow..back to blogging about MS.

Tuesday, December 09, 2008

Rebif and getting ready for Christmas


Just when I think my body is adjusting to the Rebif (is that even possible??) WHAM. Last night was injection night. No different than any other injection night. Took 800mg of IBU at noon and then again when I injected. For some reason I had high fevers all night and my body hurt so badly that even my skin hurt. Needless to say sleep didn't happen. Thankfully, with the exception of a headache, I was back to "normal" by noon. I don't have any protocols that would help and I tried several just to see if they would. I think they helped a bit with some of the pain, but not much. With all the research you would think they could come up with a treatment for MS in which the side effects aren't so bad. Of course, I realize that some people tolerate this medication with no problem. Wish I was one of them. At least I don't have to inject tonight, so after running my programs I should sleep. It's perfect sleeping weather here. It's down to the low 30's at night. I keep waiting for snow! We have a shot at getting some Sunday or Monday. If we do, it will most likely be a dusting and gone in a day, but it sure helps usher in the Christmas spirit. I enjoy seeing the decorating all the neighbors are doing. Some are really extravagant! They have large blown up Santa's, Snow men etc. Not to mention all the lights. It's beautiful at night. We're not putting lights up this year. We have our tree in front of the living room window and I have an animated deer and snowman we'll put out this weekend. I've been slowly collecting my "village" for the inside. I really enjoy adding to it every year. Of course, as it grows the challenge become where to put it all every year! I plan to start baking next week if I have the stamina. The protocols have really helped boost my morning energy, so I anticipate doing all my baking in the morning. I started years ago giving homemade baked goods to my neighbors for Christmas. Brownies anyone?

Monday, December 08, 2008

Christmas Season arrived at my house

The Christmas season has arrived at our house. We put our tree up and decorated it with ribbon, bows, sparkly ornaments and of course lights are on the tree as well. The angel at the top (I've had her for years) is too tall, so she will be replaced this year with something else. I started a village collection a few years ago and have added each year. This time I found a piece that is gorgeous. (BIG though). It's a house on a hill with a train that goes through a tunnel in the hill and a river that flows down the hill and around the front. It all lights up, including the river. There is also a snow man, bridge and a few people on it. (Told you it was big). I picked it because of the moving train. My husband LOVES trains and I knew he would like this piece. (He does). We ended the night drinking brandy in Egg Nog (YUM). Made me miss my dad though :( Dad and I had a tradition of drinking Egg Nog together. That's the hard part of family being so far away. Maybe next year we'll be able to enjoy it together. Next weekend we'll start decorating the outside of the house. No snow here yet. It won't really feel like Christmas until it does. So, I have my fingers crossed. Most of my shopping is done. Surprisingly none of my shopping so far has been done on line. Much to Marks dismay as he has to go everywhere with me. Kinda hard to shop alone in the chair. I only have two more people to shop for then I'm done. Next is shipping!

Sunday, December 07, 2008

Decisions, Decisions

As those of you who have been following my blog know, this has been a challenging year for me with the MS. Fortunately, I seem to be over the worst of it....for now, and on the road to healing. Trying to spend more time out of the chair and using the walker, although I doubt I'll ever be chair free. As life teaches us, nothing comes without a price. Whether that price is monetary when we shell out our hard earned cash for the new TV we want or the emotional and physical price we pay when we are handed a health challenge. I've learned that the most important part isn't necessarily how we deal with the hardship, it's how we cope with the cost. I got through the worst that MS dealt me this year by faith, taking everything one step at a time and the support of my family and friends. I couldn't have done it without my faith and all their love and support. I became proactive with my health and learned about other treatments available out there. I made decisions on what to do, and what not to do. I tried not to take my frustrations out on my loved ones and fought to keep my sense of humor even when very little was funny. I wasn't always successful, but I tried. Now, for some reason I feel lost. Perhaps I'm just tired and the year just kicked my butt. Maybe it's just the holidays and the "holiday blues". Maybe I'm just feeling sorry for myself. I certainly don't have the answers. Right now I'm just trying to hold it all together. Trying to make sense of all the whys. Why MS? Why Me? Why not Me? I want my life back. I want to dance like I did in April. I want uncomplicated. Not easy, just uncomplicated. What decisions do I need to make to get there? Do I really have any control anyway? Do the decisions I make really matter in the grand scheme of things? Is all we can really expect out of life is just to do the best we can, BE the best we can and then just hope things work out for the best?

Saturday, December 06, 2008

Good day...bad day. Is there really much of a difference?

Seems that each day's mindset can turn on a dime. I spent the morning cuddled up with my new "don't mess with me blankie" and the afternoon cooking Thanksgiving dinner. Yes, that's right Thanksgiving dinner. Since we were away for the holiday hubby decided he wanted a "traditional" Thanksgiving dinner. So, I cooked. Turkey, mashed potatoes and homemade gravy, stuffing and of course, the required green been casserole. Cooking actually made me feel better. (I love to cook). However, now that the cooking is over I'm back to hugging the "don't mess with me blankie" as I'm running one of my protocols. Seems that running protocols is about the only productive thing I seem to be able to do. Perhaps I'm just caught in a cycle of feeling sorry for myself. Perhaps I'm just grieving over Valor. Whatever it is, it sucks. I found myself automatically putting the turkey gizzards aside for Valor's dinner. I wonder how long it takes before I stop automatically doing things for him. A month? 6 months? A year? Personally, I'll be glad when this year is over and I can look forward to happy occasions. The highs of this year have been awesome and the lows simply devastating. Right now I feel like a child tugging on Gods pants leg...asking him not to forget that I'm down here. So, good day or bad day...seems that they are all pretty much the same.

Friday, December 05, 2008

One of "THOSE" Days.

Did you ever have one of those days where you just need comfort? You don't know why or even what kind of comfort you need. You just know you need it? That's the kind of day I'm having. I'm simply out of sorts. My hip hurts, but otherwise I feel fine. I'm simply out of sorts. Part of it may be that last night was shot night which always leads to a "not so great" day. So, I think I'm just going to curl up with my new Nap blanket (thanks Mom), Maggie and my Kindle, run my protocols every three hours and have a down day.

Thursday, December 04, 2008

Baby steps

It's been a good day today. My energy level in the morning was great. Of course, it faded rapidly in the afternoon. I used my walker the majority of the day in an attempt to stay out of the chair. I'm still wobbly and need the chair for anything that requires distances longer than my hallway, but it's a start. So, I took it easy this afternoon. Caught up on some of my Tivo (I love Greys Anatomy) and just vegged out after the afternoon bible study group. (I host at my house once a week). It's shot night tonight, (UGH). Thankfully the protocols have been pretty helpful with some of the side effects. If I run the protocols first thing in the morning the body aches are much easier to tolerate and not as severe. I am so envious of the folks that don't have any side effects with their Rebif injections. I usually feel like I've been run over by a semi, twice, the next day. Not pleasant. Until this summer I often wondered if the cure was worse than the disease. Now, I'd be afraid NOT to take the Rebif, no matter how challenging the side effects are. I'm running my MS protocol now, cuddled up with my cat Maggie in bed. At the end of this protocol, I'll run my sleep protocol and hopefully get a good nights sleep. My hip pain and insomnia are the two things I continue to really battle with. They are both a little better, but have a long way to go. However, I am thrilled to be able to use the walker again, even if it is just for short distances. A little progress is better than none at all! Like Dr. Rhodes said, "Baby steps".

Wednesday, December 03, 2008

Catching up

I have so much catching up to do as it's been a few days since I blogged. Actually, things are going pretty darn well. I'm almost afraid to type that. Seems that every time things seems to be going well and I acknowledge that, something happens. However, right now I choose to revel in the fact that my MS seems to be in remission and I'm seeing improvement in my functioning. I attribute my improvement to the treatments I take with the STS RX machine. Of course, I am diligent in running my protocols. In fact, I'm hooked up now as I type. I have noticed two significant changes since my return from Texas. 1. My morning energy level is wonderful. I wake on my own by 6:30 (which is amazing since I have NEVER been a morning person) and I have tons of energy. EVERY morning. My high energy level lasts until early afternoon, then it starts petering out. 2. I've noticed an improvement in my balance. Enough of an improvement that I'm giving serious thought to getting out of the chair and using the walker. Dr. Rhodes said it would be a gradual process, baby steps. He was right. At times, I wondered if the treatments were going to help with anything besides pain. The results I'm seeing motivates me to keep going forward. The hardest part of the treatments is staying still. Being hooked up to the electrodes is, for obvious reasons, confining. If there is nothing on TV and I don't feel like reading it can be tedious. Compared to the side effects of Rebif , boredom as a side effect is a piece of cake!!! The only challenge I've had lately is a return of the muscle spasticity. OUCH. It hasn't been too bad, but bad enough to remind me how bad it HAS been in the past. I've been pretty successful at managing my stress level as well. Which, as anyone with MS knows, is vital. If it's not my problem, I don't take it on. It's that simple. Life provides us each with enough of our own problems and stressors without taking on someone else's. I think that's a skill we could all stand to learn. So, basically, so far so good. I'm thrilled with the progress I'm making and hope it continues.

Sunday, November 30, 2008

Treatment Results Update

While getting away over the holidays and spending time with family is wonderful, it's always great to come home. We left Wednesday and returned home late this afternoon. Mark and I had a wonderful visit with his family. While I spent most of my time in the chair, I had a few good days and was able to go to dinner last night without the chair. I was a bit wobbly now and then, but it was nice to be able to WALK into a restaurant on my husbands arm. MS is such a beast. You never know what limits it's going to give you on any given day, or take away. I've started having painful muscle spasms again. The neurontin generally keeps them at bay, but they never completely went away. Now they are picking up in intensity and pain level. I'm diligently running my new protocols so I'm hoping things will settle down. One HUGE improvement I've noticed after running the new protocols is my energy level. I have great energy in the mornings. Of course, I try to be careful NOT to overdo. Time has taught me that when I overdo it's an invitation for TWF to visit and kick my keister. My balance is still hit and miss. Although I think the "hits" are slowly becoming more common than the "misses". I just have to remind myself to be patient. THAT is the hardest part. Being patient with myself and the process. I make sure I take my MS meds and run the protocols. Right now I try to run them every 3 hours. My hip, back and left leg let me know when the three hours are up and it's time to run my pain protocols. Thanks to the machine and protocols I am taking NOTHING for my left hip and back pain. Not even ibuprofen. Of course, running the protocols every three hours is much easier to do at home than when your away. I have a car power adapter so I can run my machine in the car. So today, during the 5 hour drive home I ran my protocols. For me, my body needs the treatments every three hours. I can tell the difference when I go longer. Not only because of the pain in my hip and back, but my energy level drops. I'm hoping over time, I won't need to run them so often, perhaps only in the morning and before bed. Again, that's where the patience comes in, and that's not one of my strengths. I'm pleased with the results I'm getting with Dr. Rhodes' program. Of course, I also work to keep my stress level down as well. A challenge anytime, let alone over the holidays. So far, so good!

Tuesday, November 25, 2008

Thanksgiving


Hard to believe that Thanksgiving is the day after tomorrow. Where has the year gone? We're traveling tomorrow so I won't be blogging the next few days. As your all gathered with your family and friends don't forget to give thanks for all the Blessings in your life! HAPPY THANKSGIVING and enjoy the shopping on Black Friday (We're hitting it at midnight.....nuts I know, but FUN)!

Monday, November 24, 2008

Treatment Continues

This is my fourth day home following being re-tested and treated in Corpus. I have to say, I see a HUGE improvement in my balance. I am no longer having to balance by moving holding the furniture. I'm not saying my balance is back to "normal", but it's A LOT better than it was. The fatigue is still a hit or miss issue. I find I feel pretty good in the mornings and I fade fairly quickly in the afternoon. Had a bout with TWF on Friday, which really wasn't surprising considering I traveled the day before and had a medical appointment that morning. I'm running the machine several times a day (which gives me the perfect reason to lie around and watch TV or read)! The pain in my hands have improved, but they still don't want to "work" right. Grasping things and opening lids are still challenging. I just wish my Left hip would start feeling better :( I shouldn't complain, the pain IS better as long as I run my hip protocol every three hours, but it's still a heck of an ouch! Let me know what you think about the changes and new additions on my blog site!

Sunday, November 23, 2008

Finding my Routine

Right now my body requires me to run my treatments about every three hours to keep the pain at bay. (Especially the pain in the left hip/pelvis, back and leg). So, I'm trying to plan my activities so I'm home for treatments. Fortunately, I have the ability to plan my day around them. I'd be in big trouble if I was working. So, every three hours I run the hip protocol and the back protocol. It's worth it if it means I'm almost pain free. Can't seem to get the hip pain to go away completely. It typically stays around a level 3-4/10. However, without the treatments it a constant 9, so I'm not complaining. I had a Cat Scan of the hip and pelvis done on Friday, so hopefully they will be able to figure something out. It's been bothering me since the fall i took in May. It's tough that I can't have an MRI because of my implants, we would have had the answer months ago as to what the specific problem is, if I could have had the MRI. Now of course they want to send me to a "pain specialist". Obviously I'm not one for narcotics. I'm on enough meds with the MS, I don't want to take any more, thank you very much. So, I suck it up, do what I can and live with the pain I have. It's also the reason I chose to see Dr. Rhodes. I'm also confident because of the results I've had using the machine, that eventually the rest of the pain will go away. Additionally, because of the treatment I receive through Dr. Rhodes, my balance is A LOT better than it was just two weeks ago. That's not to say I still don't get wobbly and have to hang onto things to get around now and then, but it's a big improvement. I hope that by Christmas I'm only using the chair for energy conservation or when I'm having an "off" day. Speaking of Christmas. Isn't it amazing that Thanksgiving is less than a week away? Where has the year gone? Seems they go by faster and faster every year. Makes me more aware of the need to slow down and enjoy life a bit more.

Saturday, November 22, 2008

Bittersweet Homecoming

Coming home after a trip is always great. Especially one where you've been gone 2 weeks. However, this homecoming was bittersweet. We had to put Valor to sleep the day before we left town. I didn't really have the opportunity to grieve. Coming home to a dog-less home for the first time in years as well as his ashes and paw print was beyond tough. So, while I was thrilled to be home, Thursday evening and yesterday I was gob smacked with grief. I think I've cried a river. Now, I know that each day will get better and while the pain fades the memories won't. I'll always have those. Rest easy my friend. Texas was a success. My frequency was changed a few times, which is why, if possible, folks should spend a few weeks there if they can. My balance is better, not perfect, but better. I'm starting to sleep a bit better and the neuropathy is better. The left hip pain and lower back pain is proving to be a bit tougher, but they will get there. Of course, the most important thing is the improvements I'm already seeing. My general pain level is MUCH better. That alone makes the trip worth doing. My fatigue level is better as well. I still have TWF hit now and then, but I generally have a good energy level in the mornings now. (Meaning I have to be careful no to do too much). The afternoons are still a challenge, but it all takes time and I have plenty of it. I'm running the programs about every three hours while I'm home. Three times a day if I'm out and about. I DO notice a difference if I don't run the machine as often. The pain level creeps up , my fatigue level gets worse and there goes the balance. If you want information on the clinic, click the link for Dr, Rhodes in the right column.

Wednesday, November 19, 2008

Homeward Bound

Tomorrow morning I'll receive my last treatment here for this stay, then it's off to the airport for the trip home. I can't wait to get home. The stay here has been a success, even though I know I still have a way to go. With this treatment, as in life, the baby steps are the ones that begin the journey and the steady ones get you to your destination. I'm REALLY looking forward to getting back home to Mark. I've missed him and I'm more than ready to get back on the mountain.

Tuesday, November 18, 2008

Great Day...doin the Happy dance!


Today was treatment day 7. I feel great. My mid back pain is completely gone as is my hand pain. The left hip, knee and leg are still an issue as is the lower back. However, even they have improved. When I came back my average pain level was 9 I'm now down to 4.5. Of course, the relief lasts about 3-4 hours and then my body tells me it's time for another treatment. Once again, you never realize how MUCH pain you were in until you get relief. Here's another BIG improvement. I walked into the clinic. No chair. Of course, I was wobbly, but I did it! My fatigue level is still an issue, but that's more than simply the MS. It's also related to the fact that I don't sleep and I absolutely REFUSE to take sleeping medication. I run a sleep protocol and eventually it will work. It will just take some time, and I'm patient......well, I try to be. :) So, I am definitely doing the happy dance! I have two more days of treatment before I go home and I know I'll be feeling even better on Thursday. I wish everyone could have the opportunity to visit Dr. Rhodes in Corpus Christy! I am SO glad (and Blessed) that our family found him. (Thank you MB)! Dr. Rhodes talked to me today about my next visit. When I come back we're going to start working on getting me off some of the medications I take now. It would be wonderful to be off the Neurontin and Klonopin at the very least. If his other MS patients and chronic pain patients can get off their meds, I am very optimistic that with his help I can too!

No man is an Island....but we are ALL.....

onions. That's right. ONIONS. One of my favorite scenes from Shrek is the scene where he and Donkey discuss how Shrek is like an onion. LOTS of layers. (See this is what insomnia brings. Lying in bed at night tossing and turning and becoming philosophical. Combine that with watching the evening news and EEKKKKK, no wonder I start to ponder). So, as I laid there with Mr. Sandman obviously passing my bed over yet again, I got to thinking about all the different types of "onions" we all are. Unfortunately, there are plenty of onions rolling around our society that look perfect on the outside. Yet, when you start peeing away the layers they have a perfectly rotten center. Yuck. Pity that rotten core is seldom revealed before the rest of the onion has already been tossed in the recipe of our life. Nothing worse that having to start the whole freaking recipe over again. Most of us use all our layers to PROTECT our center. We try to develop tough skins that are difficult to peel away. If that doesn't deter someone we try to keep them back by being "strong" enough to make their eyes water. (Defense mechanisms can be brutal to both parties). We spend our lives building layer upon layer of defense mechanisms to ensure that few, if any reach our center thereby REALLY getting to know the REAL us. Heck, sometime WE don't want to know the real ME. Often, having those layers peeled back is pretty painful. Not only do others get a step closer to knowing who we really are, but we do as well. I think that with all of the challenges we each face in our daily lives it all to easy to loose ourselves and build those layers. Who we are, and most importantly what we NEED. There is a huge difference between what we WANT and what we NEED. Figuring out what I want is easy....KNOWING what I NEED is the hard part. Fear is also a great layer builder. Fear of getting hurt, fear of failure, fear of a chronic disease and yes, even the fear of being a success. Some spend so much time being afraid that they miss out on so much. Friendships, new adventures and yes, even success. I think we've all been there at one point or another in our life. Wouldn't it just be a lot easier to do the work and shed some of those layers?

Monday, November 17, 2008

Ugh.....sick




It so figures. Just when I'm noticing an improvement in my pain level with the treatments...wham....a cold. Started oh so subtly with a mild cough a few days ago. Now it's a full fledged almost constant cough, stuffed up head and sore throat. Anita (my friend who flew out to Texas to stay with me when Mark went back home) is sick too. The only good things about our colds are a). We feel too crappy to go out and shop (much to our husbands relief), b). (For me anyway), Dr. Rhodes has a cold a flu protocol for the machine and c). We should both be recovered by Thanksgiving. They ran the cold/flu protocol for me today at the clinic. After 30 minutes I could actually breathe through my nose. Of course, I can't run it constantly so I have a Vicks patch on tonight. Hopefully that will help keep both my nose and chest from being too congested through the night. Of course, I'm blaming this on the weird weather we've had here. The first 3 days I was here it rained every night and was humid as all get out during the day. Then it got chilly. Then it was beautiful and 80 degrees and the very next day in the 50's, windy and gray. It might get COLD at my place....but at least it stays that way! I never know how to dress here from one day to the next. I just hope we're feeling better by Thursday as that's our travel day to return home. I sure don't want to bring this home to Mark. UGH.

Sunday, November 16, 2008

Finished Week 1

Week one of treatments are done. Now on the best frequency for my body and Dr. Rhodes increased the intensity as well. I'm now at 2. The nerves of MS patients are very sensitive (makes sense) and as Dr. Rhodes said, "You can't push their treatment. With other chronic diseases and chronic pain patients you can". Meaning that the intensity level is usually pretty low. While 2 is low I was doing a mental "Happy Dance" when they were able to increase it that high. My previous intensity level was .5. Yep POINT 5. ANYTHING higher than that I could feel. Not painfully, however, your NOT supposed to feel anything. That's how sensitive my nerves were. So being at 2 is a big deal for me. I had a long conversation with one of the other physicians in the clinic, Dr. B (I can't pronounce or spell his name). He is VERY into holistic treatments and he sent my husband home with a "recipe" to treat my drinking water which will add a mineral to it. (We're going to have a mini science lab in the garage). I also talked a bit with Dr. Rhodes about MY MS. It's hard to see the DVD that highlights his patients with MS who have done so incredibly well that they are off their meds. Having the opportunity to talk to a few of his other MS patients face to face while they are there for treatment is wonderful, hearing their stories and seeing how they are walking and off most if not all MS related meds. I'm thrilled for each of them but then, there is me. In a chair and on the meds. Dr. Rhodes put it very simply, "There are those who respond very quickly, there are those that respond in a few months, and then there is you. You just need more time. We will get you there". Brings me to the thought, "Why the hell does everything have to be so flipping hard for me"? Yes, I DO see improvements, heck I'm on intensity 2! It really helps with the pain and obviously it's helping with the nerves as they are not as hypersensitive as they were. (Dr. B says that if that continues they may be able to work with my home MD and wean me off the Neurontin next year). I am SO thankful for the positive results I've seen. Perhaps part of my frustration is I have so many other things in my life to deal with I just want ONE of them to resolve itself. In an ideal world it would be the MS. Of course, I also realize part of my frustration right now is the loss of Valor. That's another entry. I just keep telling myself....it's not not the patience of Job I want.....I want to maintain the FAITH he had. So, I continue on....one step at a time. Focusing on the Blessings and knowing that there IS a reason He allows things to happen. It's all part of the Journey we call Life. I just wish the journey wasn't so rough sometimes!

Friday, November 14, 2008

Treatment Day Four Came and Went

Yesterday was a busy day. Treatments at 10 am, lunch then to the airport to pick Anita up and sent Mark homeward. I missed my husband before he even left. Such is life. Anita and I then went shopping for staples. We both decided to eat in as much as possible. I introduced Anita to HEB Plus. A mega store her. Sure wish we had one of these in my home neck of the woods. MUCH better than a Walmart. Of course, we were there for over an hour. YIKES. By the time we got to the room got everything put away and Anita unpack we were too tired to eat dinner! So, I did a little reading on my Kindle then TRIED to sleep. I think I managed to pull off about 2 hours. Insomnia sucks. That's one of the things we're really working on this time. In addition to the back pain, hip and pelvis pain, thumb pain and the MS. The fall I took in May just started a downwards spiral that we're trying to get a handle on. As we all know, stress exacerbates MS. Trying to find a balance when LIFE is filled with stress is challenging enough. Throw in unexpected negative stressors and often MS feels like a battle I can't win. That's where sheer grit and determination comes in as well as the willingness to try "alternative" treatments. I refuse to give up. I have to much NOT to give up for. Looking back it;s been a really challenging 6 months. The fall, the stress, the summer filled with exacerbation's, the chair and the loss of Valor last week. I often wonder when life is going to get any easier. Then i watch the news and realize it could be so much worse. My challenge is my health. I have a husband who loves me unconditionally and a large circle of friends an family that love and support me. I'd rather have that than health and be alone like so many are.

Wednesday, November 12, 2008

Treatment Day Three

I'm starting to feel some relief with the pain in my hip. It's not gone, but at least the "edge is off". Same with the thumbs. By Saturday I should notice an even bigger difference. I am hooked up to the machine as I type. I noticed something today. I've been in the chair about 2 months now and my arm strength has really improved! I can wheel myself pretty well in the morning. In the afternoon I tend to be toast as the MS fatigue wipes me out, but I'm pretty proud of myself. In the beginning I had wimp arms. I would be lucky if I could push myself 10 yards. Seriously pathetic. Heck of a way to get your arms in shape, but hey, whatever works! The weather here is seriously YUCK. Has rained every night and been gray every day. The worst part is the humidity! Like getting hit in the face with a hot wet towel every time you go outside. Needless to say, staying IN has been exactly what we've been doing. We go straight to the clinic for my treatments then back tot he hotel. Fortunately, the food at the hotel is both reasonable and good....so we have not been doing anything remotely touristy. Which has actually been nice. Got to spend some quality time with hubby and relax. Down time is always welcome. It's been such a stressful past few months. It's nice just to relax. Anita fly's in tomorrow and hubby fly's out. I'll miss him, but it will be nice to have some serious girl time with Anita. We always seem to have lot's to gab about!

Tuesday, November 11, 2008

Pondering

No matter how strong your faith or how strong your sense of "self" is.....we are bound to ponder the "WHYS" of life. Whether it be a natural disaster that occurs and you watch the rescue efforts on T.V. from the comfort of your living room, or a personal struggle or hardship. You look up to the heavens and ask "WHY". We all come to points in our lives in which "WHY" is the predominant question in our life. Unfortunately, there is seldom a clear answer. So, we are left to move forward, one step at a time. Hopefully, successfully over coming whatever struggle we were wading through. I myself have had such tremendous highs this year as well as traumatic lows. It seems life IS a roller coaster. Full of heart pounding highs and stomach dropping lows. The highs of my life this year was marrying my best friend, dancing at my wedding, seeing my family again and realizing how deeply my friends loved me (as well as seeing WHO they really are). The lows were the MS, the fall, and the loss of Valor. Fortunately, God is wise. He makes sure, like a roller coaster, the highs are mixed with the lows. I'm not exactly sure where I am on the coaster ride. Lately it seems that I've been on the down slope of the coaster. Holding on for dear life as it screams down. I keep waiting for it to hit the "dip" and begin the upward climb again. Allowing me to take a deep breath, wipe my palms of my jeans and perhaps laugh while I await the next dip.

Treatment Day Two

Spent two hours at the clinic today being tested and "hooked up". I'm using a new protocol to help with my hands. I'm hooked up with six electrodes on one hand and two one the other as I type. I'll run the protocol for 20 minutes then switch the electrodes from hand to hand. I swear, it looks like something out of a science fiction movie! I'm not seeing a big pain level difference yet. However, i HAVE noticed the "edge" of the pain is gone. I expect to see improvements everyday until the pain is gone. I met a woman in the clinic today who came for treatments with her lungs. She has been receiving treatment for several months and her pulmonologist took her off ALL her meds on her last visit with him. Her pulmonary function has improved dramatically and she no longer needs her inhalers, steroids and other assorted medications. There was also a woman there being treated for pain and Dr. Rhodes is weaning her off her fentanyl and Oxycontin. Can you imagine? Being in such pain they put you on the hard stuff and using a machine with specific protocols designed for you gets you off all of them. You would think insurance companies would jump at the chance to save the billions of dollars they spend each year on pain medication for chronic pain sufferers as well as for those with MS and all the other chronic diseases this machine has been successful at treating. The resistance makes little sense to me.

Monday, November 10, 2008

Day One in Texas

Wrapping up day one in Corpus Christy. Was only at the clinic for about two hours. Testing showed it was definitely time to change my settings (but I already knew that). The big focus for today was treating my hip pain. We ran a few protocols on the new settings. It will be a few days of running protocols to really start seeing a difference, but I know it works. I am still amazed at the success the clinic has had with treating not only chronic pain patients, but MS patients, renal patients and diabetics to name a few. It's not about "curing" the illnesses but treating the symptoms. This leads to a higher quality of life, and who doesn't want that! I'm here for almost 2 weeks this time, so we will have more opportunity for running new protocols and trying different beat frequencies. The weather here is overcast, windy and HUMID. It rained last night and looks like it could easily rain again tonight. The rest of the week is supposed to be beautiful after Wednesday. Mark fly's home Thursday and a girlfriend fly's in to be here for the rest of my treatments. Of course, as "Lucy and Lucy" we're bound to generate a zany story or two!

Sunday, November 09, 2008

In Memory of Valor

I haven't posted the past few days as I just didn't have the desire. Valor passed at 2:30 p.m. yesterday. He passing was peaceful. His head was in my lap and my voice was the last thing he heard, my face the last he saw. The vet stated that he agreed with our decision and it was time. It made it no more painful for us, but we know that ending Valor's suffering was the right thing to do. I cried myself to sleep last night, holding onto one of Valor's toys. I woke with it wrapped in my arms this morning. Fortunately, we had an early morning flight and, as we overslept, there was no time to think about anything else but making the plane. It wasn't until we were in the air that Valor was mentioned. The healing process is going to take some time.

Wednesday, November 05, 2008

Valor Update

Well, Mark heard from the vet about Valor's lab result. Kidney failure it is. The good news is that the shot Valor received from the vet yesterday to calm his tummy seems to have helped him. He kept down the small amount of mashed chicken, rice and green beans he had for dinner last night. His water consumption is still down, but Mark noticed the water level in his water bowl was a little lower this morning. Now, it's decision time. Valor is almost 10 and we have seen a big change in the last month, not to mention the five months before that. Do I selfishly hold on to him as long as I can, and he suffers. Or do I make a decision and help Valor go chase those butterflies in heaven sooner than I want him to? My head has already made the "rational" decision, but my heart is having a tough time.

Energy update

In spite of the emotional stress with Valor right now, I am pleased to say I'm seeing improvement (FINALLY) with the MS. As you know this summer was one long exacerbation that wouldn't ease up. As a result I had all kinds of new challenges. Optic Neuritis was a new experience and a wheelchair became my friend. What a summer! Being the scrapper that I am, I refused to just sit in a wheelchair and feel sorry for myself. (WAY to counterproductive). I tried to walk everyday. Even if all I could walk was from the chair and take two step to the recliner. Now, I'm probably spending half the day on my feet and half the day in the chair. It depends on my energy level and how strong my leg feels. This past week my energy level has really boosted up. In fact I felt so good on Saturday I did too much and as a result was down Sunday with zero energy. I hope to get to the point where soon I will only use the chair for energy conservation. Meaning if I'm out and about to shop etc. My right eye is a bit better, but still has some to go. Other MSers have told me that after their bouts with optic neuritis it took some of them a year before their eyes were "back to normal", so I have to be patient with that. At least I don't have a large black area in my vision anymore. My hands are still hit and miss. My fine motor skills with my hands can vary from day to day. So that may be something that just "Is the way it is". (You know I wrote that just for you Mom :0)~ So, it seems my body IS rebounding from the exacerbation. Thank God. A reminder to never give up. No matter how tough things are, or how bad they seem. Give the challenges to God, then give him time to work.

Tuesday, November 04, 2008

Valor

Been a heck of a few days. My dog, Valor, who is almost 10 has been sick. I've noticed a decline in the past few months and now he's sick. Each feeding is a gamble it seems. His ability to keep food down is hit and miss. We're now mashing green beans for him, soaking his kibble until it's mush and mixing it with rice. Feeding him about 2 tablespoons at a feeding to try and help his stomach keep it down. More worrisome is the fact he has almost completely stopped drinking and he's had some swelling in his rear legs. Today he's going back to the vet for the third time in 2 weeks. I pray I don't have to make a difficult decision. I was always hoping that when his time came he would go quietly in his sleep, chasing a butterfly to the heavens. Not looking at me with sad brown eyes, as if he's telling me "It's almost time". It's amazing how much our "pets" come to mean to us. For some, they will say, "he's just a dog" and don't understand the emotional attachment. Some, will understand completely as their "pets" are just as much family to them as Valor is to my husband and I. Valor of course, is so much more. Our friends know his history and how Valor and I became a "team" and I can't imagine my life without my "partner". I'll keep everyone posted on the blog. Please say some prayers for Valor. I pray for more time. I pray the vet can come up with a "magic pill" to give us more time, and if he can't I pray that God gives me the strength to do what's best for Valor and not what's easiest for me.

Saturday, November 01, 2008

Investigators Recruiting Participants with MS for Studies of Alemtuzumab

Here are the reports regarding the Phase 2 trial of Alemtuzumab.




Alemtuzumab Results Published: Reduced MS Relapses and Accumulation of Disability in Phase 2 Trial. Treatment with alemtuzumab (Genzyme Corporation) reduced the accumulation of disability and the frequency of relapses in people with early relapsing-remitting MS, compared to Rebif® (interferon beta-1a, EMD Serono, Inc. and Pfizer, Inc.). Those taking alemtuzumab had a 74% reduction in the risk of MS relapse compared with those on Rebif, and a 71% reduction in the risk for sustained accumulation of disability. Those on alemtuzumab, an immune-suppressing monoclonal antibody, experienced adverse events more frequently, including immune thrombocytopenic purpura (a serious bleeding disorder), thyroid adverse events, and infections. The results, originally reported at medical meetings, have now been published (New England Journal of Medicine 2008 359;17: 30-45), and two Phase 3 trials are currently recruiting participants with relapsing-remitting MS.

Background and Details
Alemtuzumab is a humanized monoclonal antibody directed at CD52 (a protein on the surface of immune cells) that is currently approved by the U.S. Food and Drug Administration as a single agent for treatment of patients with B-cell chronic lymphocytic leukemia. Its ability to target immune cells has led investigators to test its potential as a treatment for relapsing-remitting MS.

Drs. D. Alastair Compston, Alasdair J. Coles (University of Cambridge, UK) and colleagues have now published results of phase 2 clinical trial that compared high and low doses of alemtuzumab (given by IV infusion over three to five days once a year) with Rebif, a standard MS therapy, in 334 people with early relapsing-remitting MS who had never taken any other disease-modifying therapies. The primary outcomes were the time to sustained accumulation of disability and the rate of relapse.

Those in the alemtuzumab groups were slated to receive two to three cycles of the annual infusion. However, dosing was temporarily suspended due to the occurrence of immune thrombocytopenic purpura (ITP), a rare condition in which low blood platelet counts can lead to abnormal bleeding. After the first cases of ITP occurred, one of which was fatal, Genzyme implemented a patient safety monitoring program which includes patient and physician education and regular contacts with patients. A total of six alemtuzumab-associated ITP cases were identified and, when necessary, promptly treated.

Most of those on alemtuzumab received their second infusion cycle (207 out of 223 total), but fewer went on to receive a third cycle (46 out of 223). The results reported in this publication follow the participants out to 36 months of the study.

Results
The results were nearly the same for the two doses of alemtuzumab, so the data for patients receiving this drug were pooled for the comparison with Rebif. After thirty-six months, those taking alemtuzumab experienced significant reductions in the risk of MS relapse compared with those taking Rebif (74% reduction, with an annualized relapse rate of 0.36 for Rebif versus 0.10 for alemtuzumab) as well as significant reductions in the risk for progression of disability compared with those taking Rebif (71% reduction). Among secondary outcomes that were measured, significantly more of those on alemtuzumab remained relapse-free at 36 months (52% for Rebif and 80% for alemtuzumab). In addition, the mean disability score (EDSS) for those on alemtuzumab improved slightly (by 0.39 point) while the mean score of those on Rebif declined slightly (by 0.38 point).

Among other side effects reported in the Phase 2 study, patients who received alemtuzumab were more likely to develop thyroid disease and mild to moderate infections (i.e., infections requiring no specific medical intervention or requiring only oral medication). Thyroid problems are reported to have been easily detected and treated. Patients who received Rebif experienced injection site reactions, fatigue, flu-like illness, headache and abnormal liver function tests.


Mary Ann Holm, MSW
Manager, Clinical Services

National Multiple Sclerosis Society
Southern California Chapter
2440 S. Sepulveda Blvd., Suite 115
Los Angeles, CA 90064
Tel +310 479-4456 x121

If you would like more information, or pehaps be interested in participating the the phase 3 trail go to this link for more information: http://www.nationalmssociety.org/research/research-news/news-detail/index.aspx?nid=231

Halloween Wrap-up


Halloween was great at my house. My husband and I sat on the porch and passed candy out to all the kids. We had OVER 100 fairies, witches, pirates and other assorted characters stop by. (We had 130 candy bars, gave ONE to each little ghoul and had only 3 left. We actually went inside with kids still out as we didn't want a group of kids come up and not have enough candy for the group. We know next year to have 200 bars)! An amazing number, especially since it was RAINING! Of course, the little one's are always my favorite. They are just too cute. We had several that could barely walk, holding mom or dads hand when they came up. Of course, it made me miss my grand kids even more as they are too far away for me to see their costumes. However, I have to say my favorite of the evening was a teeny one in a skunk costume who darted by the house. Too excited to even stop for candy. We laughed quite a bit over that one. With the rain it was a bit on the cool side, not to mention WET! That sure didn't stop the fun though. I hope everyone enjoyed their Halloween as much as we did our!

Thursday, October 30, 2008

Seasons and Blessings

Boy, am I glad I decided to take the chair out yesterday for a test drive. Yesterday was beautiful! Today it's in the upper 60's, cloudy and looks like rain. What a difference a day makes! Just shows how much things can change in just 24 hours. Not only the weather, but our lives and our outlook as well. As in life, I try to choose the positive. I enjoy the cooler temperatures for more than one reason. It's a lot easier on the MS for one and the changing seasons always remind me of the changing seasons of my life. Fall tends to make me introspective, more aware and more thankful for the blessings I have been given. Our lives have so many seasons, not just related to aging. Our careers, have seasons. We watch our children (if we have so been blessed) go through the seasons of their lives as supportive bystanders. Even MS has seasons, although I think MS's seasons are rather random and tend to be brutal. Right now I'm in the "Fall" of my life and perhaps the "Winter" of my career. I think my MS is in Spring (for now), sitting back and giving me a break. A break that hope hope is forever, but I'd be happy to go a year without another exacerbation. Now, I'm waiting. Waiting to see if I regain any of the function MS took from me over the past 6 months. I'm hopeful, optimistic, but not naive. I'm very aware my body couldn't have withstood what it did over the past six months without some residual damage. At least the vision in the right eye came back. It's not 100%, but I'm happy with what I have. It beats the alternative of a blind spot in my field of vision. I'm still trying to walk, and taking "facers" when I do. Hence I spend most of my time in a chair. Either the one with wheels or a recliner. I will still TRY to walk every chance I can. Even if it means my knees look like a 9 year olds. Heck of a way to relive your youth! I intend to enjoy this Season. Not only the weather season, but THIS season of my life. Despite all it's challenges and frustrations, the blessings far outweigh each of them. For that I am so grateful. So, I'll sit in front of the fireplace, quilt across my lap with Maggie curled on top. Valor lying at my feet and focus on the blessings I have.

Wednesday, October 29, 2008

Getting out

Even though Halloween is Friday, we had temperatures in the low 80's here today. Which is amazing. Normally we've had our first snow by now. I took full advantage of the beautiful weather and took the new chair out today. It was great being able to get out ALONE. I love my husbands company, but it was wonderful to get out and pick up a friend for lunch all by myself! I feel like I've received a gift. I have some of my independence back! Of course, figuring out how everything works to break the chair down, get it in the car etc. is going to take a little time. The more I do it, the easier it will be and the faster I'll be able to do it. The chair is light enough that I can sit in the drivers seat, pop the wheels off and put them in the back seat one at a time while holding the frame of the chair up with one hand. Then it's just a matter of taking the arms off, folding the back down and lifting the frame into the passenger seat. I have to learn which order to do all the steps in that is the easiest for me. Just making ONE trip wiped me out. I don't know about everyone else with MS, but mornings, on average, is when I seem to have most of my energy. Every now and then I'll get a burst in the afternoon, but not often. I try to ration out my energy to get it to last as long as I can, because I want to DO as much as I can. Especially with the weather being so nice. I expect to come back from Texas to WINTER here in the mountains, so I want to spent as much time outdoors as I can. The new chair will make doing that a lot easier!

Tuesday, October 28, 2008

All shiny and new......


I got the new chair today. It's an ultra lightweight Quickie GPV. VERY light compared to the monster I've been in for the last 6 weeks. It weighs 21 pounds with the wheels on, compared to the 35 pounds the one I was using. The wheels pop off with literally a push of a button so I can sit, pop the wheels off one at a time while holding the frame up with one hand. The back folds down so you can then just lift the frame into the car. Amazing. It's a beautiful blue (my favorite color). The foot rest bar is solid and at 80 degrees so I can wheel right up to the stove, etc. It also means that I can bend over in the chair and pick things off the floor. The center of gravity is set so it won't tip forward when I lean that far forward. YEAH. More freedom. Means I won't have to ask anyone to pick something up off the floor for me. I have to wait for Mark to come home to really get out in it though. They didn't put the brakes on it (?!?&), and I don't have the hand strength to do it myself. So, I wait until he comes back home to really take it for a drive and make friends with it. I know that this chair will give me a lot more freedom than I've had for awhile. I couldn't lift the other chair to go anywhere alone. So I'm really excited about that. Yet....part of me looks at the chair and sees it as a reflection of personal failure. On a rational level, I know it's not. However, the irrational part of me looks at it, all shiny and new, and sees it as a sign that I have either given up or been defeated by the MS. I'm hoping that the chair will eventually become something I only use periodically, just for energy conservation. As long as I continue to fall on a regular basis I know I'm safer in the chair. So, right now, it is what it is.....

Rally call


The morning after Rebif injection night is always a challenge. Seems that lately it doesn't matter how careful I am to pre-medicate myself a few hours in advance with IBU, and take another when I go to bed, my body always feels like it's been run over by a truck the next morning. Throw in the Neuropathy I've been having and it's enough to make me just want to stay in bed. I don't though. I hoist my petard out of bed, into the chair and start my day. Not wanting to doesn't matter. Failure to live my life isn't an option, no matter how crummy I feel or how hard it is to move. Giving up means giving in. I just won't do that. Focusing on the positive is often a daunting task. Especially when your having a day, like today, that all I REALLY want to focus on is feeling sorry for myself. I have identified a pattern in my behavior with the MS. I will experience an exacerbation, a pseudo-flareup, or a new limitation. I'll get pissed off about it. Which is actually a good thing....in the beginning, as it only last so long. (I never could stay made at anyone or anything for long). I think the anger helps keep me going with the "The H*%$ this disease is going to beat me" attitude anger gives me. After a few days the anger dissipates and I'm left with the "I'm throwing a pity party who wants to come?" mindset. (Which is where I am right now). My preference during the "It's my Party" chorus period (OK most of you likely have never heard of that song, so go to lyrics.com and read them), is to live in my bed, surrounded by chocolate and Petrone Silver. The remote by my side (it wouldn't be in my hand because between the chocolate and the shot glass my hands would be full. Leaving me to change channels with my nose). I'd rather have the Silver shot than the Rebif shot. Of course, part of being an adult is being rational. Whether I want to be or not. With that rationality is the realization that all a "Pity party" will do is actually make things worse. Hence, focusing on the positive. Often desperately. Thankfully, when I can't find the positive I have so many wonderful family members and friends that rally around and find it for me. So, troops. As hard as it is for me to admit....it's time to rally.

Sunday, October 26, 2008

Home Sweet Home


Arrived back home this afternoon after a quick trip. OK, it really WASN'T quick. It takes 5 hours each way. Of course this is only if you DON'T have a freaking flat tire and have to stop every 30 miles or so because you have a passenger (ME) that either has to pee or is having yet another muscle spasm in her left leg or glut (ass for those of you who never took A&P) and has to move. But I digress. Anyway we went up North to help Marks dad celebrate his 80th birthday and his eldest niece her baby shower. We had a WONDERFUL time. The shower was fun and he has a great family, so it's always nice to spend time with them. We left here Friday at noon and returned today at 2. Needless to stay it was a VERY quick trip. One that totally kicked my butt. Which in turn totally pisses me off. Just a short year ago, I would have returned home, unpacked, started the laundry, went grocery shopping, cooked dinner and STILL had energy left over. Now, I slept the last part of the drive home and still arrived exhausted. Some company I am for the drive. Then, poor Mark has to push my chair in because I don't have the energy to roll myself in. I then plop myself in a recliner, guilt ridden while he unloads the car and goes to the store. Someone asked me this weekend how I "feel". Not counting the pain, I honestly "feel" great. It's the fatigue that just kicks my behind. Pain, while frustrating and let's face it, painful, is manageable. You take a pill, rub the muscles, cry and pray A LOT. However, you get through it. The fatigue, I just can't get a handle on. I was reading another blog today of someone who is also fighting fatigue and feels like she's "married" to her couch. Boy, can I relate. For me, it's not a couch, it's a recliner. I am horrified by how little activity it takes to put me in the recliner. Of course, It's also safer for me to be there. My left knee looks like it belongs to an 8 year old boy from all the falling I've done lately. Which also pisses me off. MY MS generally chooses to mess with me by taking away my energy, messing with my balance and making my fine motor skills "not so fine". Yet, it leaves me FEELING "normal". I feel like I should be able to do everything I did before. Yet, inevitably when I try I either end up on the floor face down or in the recliner butt down because my day's allotted energy allowance was drained just getting out of bed and dressed in the morning. Of course, trying to find the humor in the situation is just what I try to do......so I'm searching.....digging REALLY deep. Nope, not a chuckle to be found let alone a really belly busting guffaw. So, I think for this evening I'll just let myself be pissed off. Yep....feels about right!

Wednesday, October 22, 2008

And the band plays on......


off key. That seems to be my life with MS. My favorite time of the day begins and ends about 10 seconds befoAdd Imagere full consciousness kicks in. It's those brief nanoseconds when I hover between sleep and wakefulness. During that brief period of time I don't have MS, I'm not thinking about MS and my brain isn't awake enough yet to remind me of my limitations. Then, I try to roll over and the band begins playing off key. Rather like 6th grade band. Remember the 6th grade band?They sure try hard. 200% effort is given. They just aren't quite there yet. Just like my central nervous system. The brain sure tries to get the signal where they need to be, but everything is off key. I wake up each day like everyone else. Not knowing what the day may bring. Yet while others worry about what bill may come in the mail, the grind of yet another day at the office or the quote the auto repair shop will be giving them, their band plays in perfect tune. Rather like the Philharmonic. My day begins with the same mental worries. Then things like trying not to fall and getting dressed without help become my focus. Once I'm dressed, (independently and without falling I hope), and in the chair my life, for the most part, IS like everyone else's. Same worries, same frustrations, same joys. And the band plays on.......

Monday, October 20, 2008

Texas Bound...again


We're heading back to Texas so my machine can be readjusted for me. Going for a longer period of time this time around. (Hurricane Ike interfered last time). I'm looking forward to the trip. I got SO much pain relief from the machine and was able to sleep. I know I'll get that relief again. My body just got used to the beta waves (which is a GOOD thing) and is ready for the next level. Mark will be going for the first few days then a girlfriend is flying out for the rest of the trip. I can't wait to spend the time with her. Brings back memories of our San Francisco "girl" trip. The zaniest things happen to us. We're like Lucy and...well I was going to say Ethel, but we're more like Lucy and Lucy. I will have my new ultralight custom wheelchair by then as well, which will make it much easier for me to get around in. I coordinated our trip so I won't have to miss next months MS support group meeting. I think the meeting is too important to miss if it can be avoided. Anyway, hubby leaves again this afternoon and I want to spend some time with him. So, I'll blog at you later.