Yes, it has been a while since my last post. I do apologize as it has been a crazy couple of weeks. I am currently working on getting my workout written out for everyone and looking back on the beginning of my own fitness journey.

Before that I would like to say that as time has passed I have become more convinced that stopping the MS meds was the best decision I have made in the last 5 years. I read an article yesterday about Sanofi Corp being approved by the FDA with a 14-0 vote to pass their new MS med. They did not however agree on the efficacy of the drug, and they say that there was not valid testing results and they still approved this med.

I am posting a link to this article because there is something I would like to point out. When I say I do not believe there will be a cure for MS anytime soon, I say this because it is not good business sense to cure this disease. By "treating" MS, these companies have made BILLIONS of dollars. Why would you provide a cure no matter the price? What would happen to these companies if they provided a cure for patients? I am not trying to be cynical, I am just stating the obvious here.

This is the last quarter earnings for said companies. Note I say QUARTER as in one fourth of the yearly total.

Company	MS Treatment	Revenue (most recent quarter)	Growth (YOY)
Novartis	Gilenya	$518 million	64%
Sanofi	Aubagio	$59 million	N/A
Biogen Idec	Tecfidera	$286 million	N/A
Biogen Idec	Tysabri	$403 million	0%
Biogen Idec	Avonex	$733 million	0%
Teva	Copaxone	$1.05 billion	1%

REVISED Warm-Up/ Cool-Down Routine

 

I posted this earlier today but somehow the formatting didn’t transfer very well and I ended up with a mess and half of the pages missing.

 

 

This is my warm-up and cool down routine that I use prior to and after my workout. This is also a great place to start when you first get out of bed to loosen your joints/ muscles.

Some people have benefited from having a yoga block (hard foam block) to start out with yoga poses until they are flexible enough to reach the ground.

Be aware of your body. Do not force the poses. Maintaining balance is key to any workout. Don’t be discouraged if you cannot do the whole routine. As I have said, this is the routine I use and your needs may be different from mine.

I do 5-10 reps for each pose before beginning my workout routine. Hold each pose for 15-30 seconds while maintaining normal breathing.

*** Please note these are not my pictures. Most of the pictures shown below come from http://www.yogajournal.com which is a great website you can use to track your progress and also has sequence builder you may use to build your own routine around your needs. ****

Another great website to check out if you want more info for each pose is http://www.abc-of-yoga.com

	Mountain Pose: Stand tall with your feet together and arms by your side. If you have a hard time balancing with your feet together, widen your stance a few inches so that your feet are hip width apart. As you breathe in, bring in your belly button and lift your chest. Stretch your toes out to find your center. You may also want to rock back and forth between your heel and balls of your feet until you find a comfortable balance.
	Back Bend: From Mountain Pose, as you breathe in, slowly lift your arms upwards. Interlace your fingers above your head. On exhale, slowly bend your back and stretch backwards bringing your arms behind you. Bring your body back to mountain pose as your inhale. Remember to keep your legs firmly planted and your body centered to maintain balance in this position.
	Forward Bend: From Mountain Pose, breathe in while slowly lifting your arms upwards above your head. As you exhale, bend from your hips and stretch forward placing your hands on the ground. If you find this difficult, you can put your hands on your thighs or bend as far as you feel comfortable with. Return to Mountain Pose as you inhale. As you become more comfortable in this pose, walk your hands inwards towards your feet until your hands are resting beside your feet. Remember to keep your legs straight and center your body.
	Wide Legged Forward Bend: From Mountain Pose, spread your legs wide and inhale. As you exhale, bend forward and place your hands on the floor in front of you. As you get comfortable with this pose, walk your hands inwards towards your body until your head and hands are centered between your legs. Keep your legs straight and balance your weight on your feet. Bring your body upright as you inhale.
	High Lunge: From the Forward Bend Pose, turn your body slightly to the left so that you’re facing the left leg and your left foot is pointed outwards. Your right foot will be strong behind you with your toes facing forward. Inhale. As you exhale, push your torso forward so that it is aligned with your left knee and your hands are touching the ground on either side of your left foot. If you have difficulty with this pose, you may place your hands on your left knee instead of the floor. You should feel both of your legs stretching and keep your body centered and elongated. Inhale, bring your body back to a wide leg stance, swivel your body and repeat on the right side.
	Low Lunge: From High Lunge Pose,(inhale) bring your back leg to the floor from knee down. Point your right foot forward and your left foot should be pointing outward behind you. As you exhale, bring your arms upward, and lean into your right leg. Inhale, bring your body back into a wide leg stance, swivel on your heels and repeat for the left side.
	Plank Pose: Turn your body so that you are on your knees with your arms directly under your shoulders. Spread your fingers for better balance. Tuck your toes and step back with your feet so that your body is in a straight line. As you inhale, pull in your pelvic muscles towards your spine. Relax those muscles as you exhale.
	Downward Facing Dog: From Plank Pose, (inhale) walk your hands backwards and bring your hips/ butt upwards so that your body forms an upside down V. Bring your abdomen in towards your spine and elongate your body stretching upwards as you exhale.
	Child’s Pose: From Downward Facing Dog Pose, bring your knees in to touch the floor. With your torso tall and upright, inhale. As you exhale bend your torso forward to rest upon your knees with your head down and arms on either side of your legs.
	Cobra Pose: From Child’s Pose, bring your body forward so that your stomach is on the floor and your legs are straight and the tops of your feet are on the floor. On inhale, pressing your thighs into the floor and bringing your elbows in towards your body, push up with your arms and bring your torso up off of the floor.
Cow Cat	Cow Pose & Cat Pose From Cobra Position, bring your arms perpendicular to your shoulders and rock your body back onto your knees with your upper body perpendicular to the floor (also known as Table Top Pose). As you inhale, lift your chest and buttocks towards the ceiling allowing your stomach push down slightly to the floor. Return to Table Top Pose. From Table Top Pose, tuck your head and chest so that your head is pointed downwards. As you exhale, round your spine and bring your spine upwards towards the ceiling while pushing your buttocks inward towards the floor. I combined these two together for a better stretch.
	Mariachi’s Pose: Sit on the floor with your legs together and in front of your torso make sure you are sitting upright with your torso tall and straight (this is known as Staff Pose). Bring your left knee up and place your left foot flat on the floor as close to your buttocks as possible. As you exhale, turn your torso to the left. Use your left hand to balance behind you and bring your right arm over the left thigh. Keep your spine/ Torso centered and upright.
	Fish Pose: Lie down on your back with your legs straight and your feet together. Place your hands palms down under your thighs. Pressing down on your elbows, inhale and arch your back, bringing your chest up towards the ceiling and dropping your head so that the top of your head is touching the floor. Breathe deeply and keep your legs relaxed.
	Bridge Pose: Lie on your back with your knees bent and your palms facing upward on each side of your body. Lift your hips up towards the ceiling, squeezing your thighs and glutes.

At this point I move on to my balance ball. I do 10 reps of each.

	Hip Rotations/ Seated Hip Roll: Sit on the ball with your legs perpendicular to the floor, hip with apart, feet flat on the ground. Roll your hips to the left and back to center. Repeat with right side. Place your hands on your hips and roll your hips in a circle to the left then to the right while keeping your upper body straight and still.
	Pyramid Stretch: Lie on the ball balancing on your hips with your head and body stretched outward. With your hands and feet on the floor, pull your hips upward towards the ceiling.
	Ball Arch: Lie with your lower back across the ball with your hands on each side of your head and your feet flat on the floor. Slowly roll your body so that your head is closer to the floor and roll back up to a bridge position. You will roll onto your heels with your toes facing upwards towards the ceiling.

And that is my warm- up/ cool-down routine. I know in the beginning it seems like a lot, but once you get the hang of it, it is rather easy.

Technorati Tags: Workout,Yoga,Beginners,Multiple Sclerosis,MS,PPMS,Weight Loss,Exercise,Balance Ball,Swiss Ball,Stretching,Balance,Core,Strength,Training

Before You Begin A New Workout Routine

Before posting my workout s and how I have adapted them to fit my needs, I wanted to touch base on some things you should know before you start working out. These are things I have found to help reduce fatigue and muscle pains.

A few things to know before you attempt any workout:

· Stay hydrated!! Before during and after your workout, you need to be hydrated. This is one of the most important lessons that I had to learn the hard way. Aside from maintaining your proper body temperature, when you sweat your body releases toxins from your system and being dehydrated causes these toxins to build up which causes cramping and pain after your workout. Also remember that coffee, tea, and soda actually increase dehydration.

· Take an anti-inflammatory (such as Aleve, Tylenol, Advil) before workout to help reduce muscle and joint pain after your workout. It has also been proven that vitamin C has shown benefits in decreasing muscle aches and helping muscles to heal after a workout.

· “Brace For It”- All of those old injuries will be popping back up if you do not take measures to stabilize the area.

· Stretch/ Warm-up. You don’t jump into your car on a cold winter day, start it up and start doing 80mph without expecting trouble. The same can be said for your body. Just as important as warming up, your body also needs to cool down. Although I do my cool down as part of my routine, I also spend another 20-30 minutes resting and allowing my body to slowly cool off before heading into a warm shower to help relax my muscles.

· Learn to listen to your body. Pushing the limits is one thing and minor muscle discomfort can be expected, this is sometimes referred as DOMS (Delayed Onset Muscle Soreness). Serious pain and pain that lasts more than 24 hours is not normal and a sign that you need to change something in your routine.

· You need to rest between workouts. Your body needs to be able to recover.

· Wear breathable clothing.

· Proper nutrition is vital to maintaining your body. Your body needs to be fed properly in order to burn calories and build muscle strength. Your car doesn’t run without gas, neither does your body.

Technorati Tags: workout,work-out,multiple Sclerosis,ms,fractures,hydration,tips,getting started,inflammation,muscle,joint Flex,pain Management,pain,injury,nutrition

I am the last person in the world to tell anyone to listen to their doctor. According to my doctors, I should not be able to walk much less work out. My sheer stubbornness has gotten me this far and I will not be giving up anytime soon no matter what my doctors think is better for me. My doctors do not have to live inside of my body and they do not have to manage the pain, I do. That is not to say everyone should ignore their doctors. I do recommend consulting with your doctor and or a physical therapist beforehand. They can be beneficial in helping you to find the correct position and exercises to suit your needs.

32 Pounds Down 18 To Go

I am proud to announce that I am 32 pounds lighter. Even more proud to announce I have discovered a miraculous range of motion in my back that I never thought would be possible again after breaking my T10 to L1 vertebrae. I will attribute this to a combination of chiropractic and refusing to listen o my doctors. There are a few reasons my doctors all seem to think I should not be able to walk much less workout. For starters I have MS… Primary Progressive Multiple Sclerosis. Then there are the broken bones in my back that have resulted in more damage to my spinal cord and more pain. Since all of that wasn’t fun enough, I broke my foot (Lisfranc Fracture) which has left me $45,000 in debt after 3 failed surgeries. I am not looking forward to surgery #4, but know it is going to need to happen sometime in the near future. I share all of this for a reason. After being in a wheelchair for almost a year and being on bed rest I managed to gain 12 pounds. This left me weighing more than I have ever weighed, including being pregnant with my daughter. It was time to take charge and get rid of this weight.

 

Once the weight started coming off, I found a few other perks from my new routine. The more weight I lost, the less pain I felt in my back. I have decreased the amount of pain meds I am on. The increase in energy alone has made this journey worth it; I am getting more done throughout the day without having to plan my day around a nap. I was absolutely shocked and amazed a few weeks ago when doing my leg lifts and deciding to see how much further my legs would go before my back says no; I was able to put my legs on the floor above my head. I couldn’t believe it. I did it 15 more times and then sat there and cried like a baby for 2 hours, not because I was in pain but because I never thought I would be able to do that again. In the beginning, the weight began to come off rather quickly. The first 20 pounds were a breeze; the last 12 have been slow going with another 18 to go to hit my target.

 

There have also been a few pitfalls of this new routine. For starters, I have to force myself to take the time each day to work out and I have to remind myself often that I need to continue with this plan. Because of all of the injuries I have to suit up in order to start my workout which is a workout in and of itself. There is a mid-lower back brace, an upper back brace, and a foot brace. Most days I do not mind the muscle pain, as it reminds me of how far I have come, but I had to learn how to judge the difference in workout ache vs. a real injury and I have learned that the hard way more than once. Also because of all of the injuries I have had to adapt my exercises to not put too much pressure on certain parts of my body, there isn’t exactly an exercise routine on the net that takes into account all of the physical limitations. After my last experience with physical therapy, I refuse to go back. I was sent to PT when I broke the first 2 vertebrae, a combination of a worthless doctor and inexperienced physical therapist who was fresh out of the Marine Corps resulted in an additional 2 broken vertebrae. Coming up with my own routines and adapting them accordingly has taken a lot of trial and error, and has also caused a few injuries. One of the other issues I have had over the last few months is my own stubbornness. Recently I had the flu, when I was feeling better I decided to get back on the horse. Unfortunately, I forgot that it took me weeks to work up to the level I was at and going back in full throttle was an excruciating reminder that my body is nowhere near where it used to be physically. Both my muscles and my joints joined together in protest to force me to take a few more days off and then start back at the beginning.

 

Ironically enough as I write this I am overwhelmed by the scent of Joint Flex and Arnica Gel. For those who haven’t heard of Arnica Gel, I will tell you this is a little tube of awesomeness you can pick up at your pharmacy for around $10. A friend told me about it after I tore a few ligaments and ripped a muscle and had massive bruising. Within a couple of days I noticed a dramatic improvement of coloration. Also Joint Flex doesn’t work for crap on my joint pain, but it does work pretty well for muscle aches. Some people have found help with a foam roller. Personally, I question if these people are masochists. The few times I have used the roller (under the advice of my Physical Therapist) it has caused more pain than help. Before my foot injury, the greatest piece of equipment I ever owned was my inversion table. Some people hate them. With the spinal compression fractures, it really did help to alleviate the pain in my spine. Though it did take a lot of getting used to (inversion is a lot harder than I looks)I also discovered it was a great workout for your core muscles and was indeed worth every penny that I paid for it. Sadly, after I fractured the foot I was released from doc to start using my inversion table again and discovered the bar that holds your feet in place went right across the middle of my foot where the fracture was. I looked into the “gravity boots” and the adapter piece for the table to use them. The boots and the adapter bar costs more than the table. I would have been willing to come up with the money for it. However, a friend had the same set-up and allowed me to give it a try before I bought it. The boots also cut around the same area as the original bar which would put all of my weight on a bar across my foot where I had just had fusion surgery. There was no way I was going to be able to use this. I ended up selling my beloved table after the third failed foot surgery.

 

I have been asked to write up the exercises and routine and how I have adapted each to accommodate for my injuries, which I will be starting in my next post. I wanted to give a bit of a background and a warning beforehand. I am not a doctor, I am not a physical therapist, and I am not a physical trainer. I am a housewife, a mom, an MS patient, and a person who has worked her butt off (literally) to get to where I am today. I also wanted to share some of the other things I have learned along the way and things that I have found to help. You don’t need a lot of specialized equipment, or a gym membership. The only equipment I use is a stability ball and a set of resistance bands that I have accumulated over the years. Also I would like to ask for suggestions, if you have any tricks or secret weapons that have helped you along the way.

Technorati Tags: exercise,work out,MS,Multiple Sclerosis,pain,weight loss,Arnica Gel,Joint Flex,Chiropractic,spinal injury,Lisfranc Dislocation,Stability Ball,Core,muscles,yoga,pilates,disability,range,motion,fractures,spinal,vertebrae,injury,recovery,wheelchair

4 Days of Fentanyl

Day one began after 2 hours of sleep and 4 hours in the car which was a culmination of 2 very emotional doctors appointments. I met my new pain management Dr. Though I have come to hate all things MCV over the years I will say I was not unimpressed with the new doctor. He actually spent 2 hours with me going over every pain issue and reason for it and every pertinent medical fact of the last 5 years. And he tolerated my tears and seemed to understand my frustrations. He also decided that continuing to increase morphine was simply not an option. Yes, I would most likely benefit from increasing the dosage however he knows the insurance refuses to pay anything above 120 mg a day. Plus as my medical records have suggested, I have built a tolerance to it that isn’t going to get any better.

 

At this point he decided the next option would be to try Methadone or the Fentanyl patches. He did not want to prescribe methadone based on my age and the fact that 95% of my causes of pain are inoperable and will not be going away anytime in the future. More about that appointment and the other 2 appointments in those 2 days later.

 

So I started the patch that afternoon. Put it on, fought the heat while cooking dinner on the grill. Took about 4 hours before I noticed a decrease in pain. All was well until bedtime. I took my meds and was in my room getting ready for bed when the nausea hit. As soon as I laid down, I was jumping back up to run to the bathroom because my dinner refused to stay down. Finally managed to fall asleep but was extremely dizzy and very nauseous.

 

Day 2  I awoke with a splitting migraine and an already scheduled follow up with my primary care doctor. I couldn’t say for sure that is was the new medication making me sick because there were a LOT of other factors to consider. There was the lack of sleep, the heat, the emotional roller coaster ride, and yes, I already mentioned the lack of sleep, but the lack of sleep is enough to make anyone sick. Day 2 was yet another insanely hot day and the heat was not helping. The headache went away as did the nausea… until I ate lunch. The nausea came back with a vengeance and I attempted to lay down for a nap. The room began to spin and I had to get back up. The rest of day 2 was spent fighting the nausea. I had a handful of Nauzene tablets and some dry cereal for dinner as it was all I could stomach. One thing I will also point out that I noticed on day 2 was an intolerance to light. I am usually the person who insists on turning on the lights in the living room when it starts getting dark out (My kids prefer to sit in the dark, unless they are leaving a room which which case the light is guaranteed to be on), but I could not stand the light, and even reading a text message on my phone hurt.

 

Day 3 came with both pain and you guessed it….nausea! But worse than fighting the urge to puke was the pain that had come back. I began to feel a little better that night. I did spend the day complaining that MMJ is still illegal in Virginia as I had a feeling it would work a heck of a lot better than those disgusting cherry flavored tablets.

 

Day 4 I woke up in as much pain as when I started the patch. Figures since it was time to switch it for a new one. Took more than 1 cup of coffee to talk myself into putting on another patch. This time I did change locations. It’s been 8 hours since the swap out. So far the pain has gone from a 10 to a 7. But the biggest improvement was the ability to eat dinner and not have to take nausea meds before and after.

 

All that being said, I will say what I believe may have been the issue from the beginning. Neither the doctor nor the pharmacy informed me of one of the most important pieces of information I found in the tiny words on page 3 of the medication info pack: Avoid hot showers, hot tubs, sunbathing, exercise, or anything that would cause an increase in body temperature as it will cause you to absorb the medication too quickly.

 

I do believe that is why I was so sick and why it stopped working after 2 days. Which makes absolutely no sense to me why the doctor who prescribed this medication on the hottest day of the year thus far did not bother to warn me. So for anyone out there who is about to start Fentanyl… please be advised… stay away from heat.  Also the patches do not stick very well, and I was smart enough to ask my doctor about swimming with the patches on before I left his office. He recommended Tegaderm, which is both 100% waterproof and LATEX FREE! They work great for keeping the patch in place. I have not tested the waterproof factor other than a quick shower, but so far so good.

Technorati Tags: MS,Multiple Sclerosis,Pain,Pain Management,Compression Fractures,Lisfranc Dislocation,Morphine,Morphine Sulfate,Fentanyl

Tears of Joy, this is new.

I have spent the last 8 months kicking myself and second guessing myself wondering if I made the right decision to stop the Tysabri. I couldn't take being sick 2 weeks out of the month. I had to spend at least 4 hours at the hospital per infusion. When I got home (I had to have someone with me or they wouldn't release me), I would go straight to bed and crash for hours. It was the one day of the month I had to have someone else take care of my kids, cook dinner, and help with homework, etc.

I stopped the Tysabri last October. At the time I stopped because I had the flu, and they told me not to come in until it was gone. I started feeling better before my daughter came home with a second strand of the flu, it was the end of November before I was over it. It was around this time I met with the new surgeon who decided my foot needed another surgery and he scheduled it for January.

Against the advice of my neurologist, I didn't get the November or December infusions because I didn't want to compromise my immune system prior to going in for surgery. This was the third surgery in a year and they told me it would be more invasive and involve a hospital stay. The surgeon agreed with me not to get the infusion.

I had the surgery, I then had to wait until the incisions healed to get another infusion. Of course there was an infection in one of the incision sites, which wasn't seen until the hard cast came off 6 weeks after surgery. Like every time I have come off of the infusions, I began to feel better. I began feeling stronger and I began to appreciate not being sick every month.

My doctors on the other hand, all felt the need to make me aware of the dangers of stopping Tysabri. I was warned repeatedly that the MS was going to go crazy, I was going to grow new lesions, I was going to only get worse. I was told that getting a sinus infection, and bladder infection every month was a small price to pay for not growing new lesions. I was told I was being ignorant and jeopardizing my own health by refusing to go back on the Tysabri.

I felt I was making the right choice to stop this treatment. My body was feeling better, I stopped most of the other meds I was taking. I went from 13 medications a day to 5. That was an easy choice though the week of withdrawals made me wonder if I made the right choice.

I didn't know if I made the right choice. I second guessed that decision every day. It became a daily struggle. I felt better, but was I making it worse? This battle raged, though I stood by my decision to stop it because my body was finally allowing me to feel some sense of normalcy again.

My pain management doctor was fired and her replacement was a man who bragged of his Harvard Medical Degree. We met once and upon looking at the file in his hand he stops when he sees MS... and it was at this point he tells me my case is too complicated for him and I need to go to Richmond to be seen at MCV (WORST HOSPITAL EVER!!!). And Upon booting me out of his office he hands me an order for MRIs for the fractures in my spine.

I ended up calling the neurologist to let them know I have these orders and she will need to add the brain and the contrast. And of course this means getting doc #1 to rewrite the order with contrast and going to pick it up, then going to the other side of the hospital to pick up the second order from doc #2.Then getting the MRIs.

9 blown veins to get the contrast in my arm.

I was bruised from elbow to hands on both arms.

Took forever to get the darn things done.

BUT.......

I picked up my results a few days later and I began to cry as I read them. The nurse came over to ask what was wrong and I told her these are tears of joy and relief. She being my favorite nurse of all the ones I see, hugged me and cried with me right there in the middle of the lobby. I have NO new lesions, 2 of the old ones are significantly smaller, and no signs of active demyelination anywhere. My MS findings are all stable. And when I read those words, I felt the weight of the world lift off of my shoulders and I realized I can stop second guessing myself. I also realized that I am still going to refuse to go back on Tysabri and I have no desire to try the new pill.

On the not so great side, there are more herniations around the fractures and the discs are pushing into my spinal cord, which they believe is the source of most of my pain. But even that wasn't really bad news. Seeing as I have to see a new pain management doctor, it helps to have proof to show there is a valid reason that I am there and I am not some addict trying to score pills.

Been a while since I cried happy tears.

Insomnia Insomnia INSANITY!!

I am so done with these damn doctors! I went to see my Primary Care Doc last week. This was a follow up to two weeks before. He got the results of my blood tests and he sees that I am both vitamin B and vitamin D deficient. Well DUH I have MS!! The good news, my thyroid levels are normal. None of this explains my sleeping issues.

So he started me on B12 shots and added a high dose vitamin D supplement. B12 shot… excellent idea! Except of course for the fact that giving me super energy boost when I have been complaining for months about sleep issues seems to be a pretty logical bad idea.

I have been on Ambien for almost 3 years now. It stopped working and when it does work, I sleep less than 4 hours. He added Elavil a while back. That was also not working. Then there was the lovely issue where my congressman decided that I was no longer allowed to have the 12.5 mg of Ambien CR I have been on for almost 2 years. Some moron wrecked her car and blamed Ambien so congress decided no one was allowed more than 5 mg. So I didn’t sleep for 3 weeks. I was then able to be bumped back up to 10 mg. Still not working. I am trying to explain to him that after 3 years on this drug my body has grown immune to it.

I have tried every other sleep aid he has to offer. I was then told to double up on the Elavil. Did this for 2 weeks prior to last week’s appointment. Still not working. And at this point I am out of both Ambien and Elavil.

My doctor in his infinite wisdom has decided that he isn’t going to write me a script for anything to help me sleep until I follow up with the neuro I haven’t seen since last October when I stopped Tysabri infusions. I don’t have a reason to see her. The only medication she was prescribing for me was Tysabri. I am PPMS. I have had no new symptoms since then that she can do anything about, thus what is the point?? I was also told to wait to follow up with her until he got the results of the blood tests.

And now he is blackmailing me into making an appointment with my neurologist by withholding sleeping medication. I mean seriously??

This is the same week my pain management doctor was fired, and I was passed on to the new doctor at that office. This man is a graduate from Harvard Medical. He decided my case is too complicated for him (i.e., I have MS) so he has passed me on to the worst hospital I have ever dealt with which is in Richmond, a good hour and a half drive each way from my house.

I have been awake since 9 a.m. yesterday morning. 27 hours of being awake and the insomnia is causing more frustration than I can handle. I am also bipolar…which ALL of my doctors know. Do they not realize that not sleeping is a trigger for people who are bipolar, and the stress from all of this is a trigger for MS symptoms??

I am so frustrated I want to punch someone in the face!

Band Aids and Bullet Holes

Band Aids and Bullet Holes There is a saying you will hear me say a lot. Treating the symptoms, and then treating the side effects of one drug with a second drug makes about as much sense as slapping a Hello Kitty Band Aid over the hole someone just shot into your chest. It will not fix the hole, it will not stop the bleeding, but it will cover it up if only for a second or two. You can still bleed out behind the Band Aid. When it comes to Multiple Sclerosis every doctor I have met has his own approach to Band Aids and bullet wounds. One gives me medicine to treat the symptoms of MS and another gives me medicine to treat the side effects of the first drug. None of it actually fixes the problem, and before you know it you find yourself taking 30 pills a day and you have no idea what pill treats what. Then you have the doctor who decides you are on too many pills, cuts you off of most, and within a year you find he has written you at least 6 new prescriptions, all in the name of science. I ended up cutting myself off of most of my meds and got to go through the ever so pleasant experience of withdrawals because I could no longer take the amount of poison I was dumping into my body each and every day. Another sad discovery I have made recently; when it comes to doctors and MS patients, the drug companies have convinced the doctors that you need to be on something to treat the disease. If there was any drug on the market that came with more than a 35% efficiency rating, I would possibly agree. However, this is not available. This also leads me to mention that although the great doctors take the time to diagnose the proper form of MS you have, most refuse to actually write it on your chart. There is a very good and bad reason for this. If you are not RRMS, your insurance will not approve any treatments because the FDA has not approved any treatments for any form of MS other than RRMS. There are 4 different categories of Multiple Sclerosis you can have. • RRMS- Averaging 85% of people diagnosed is RRMS (Relapsing- Remitting Multiple Sclerosis). This is where symptoms come and go or get worse and then improve over time. RRMS patients tend to respond well to not only steroids but also most of the DMDs (Disease Modifying Drugs). • PPMS- Effecting around 10% of the MS community is PPMS (Primary Progressive Multiple Sclerosis) I speak from experience when I say symptoms hit you like a freight train and never let up, though certain ones can come and go, and when you think it will not get any worse, it does! Doctors will tell you this is a slow and steady incline of symptoms; I will tell you that is bullshit! I will also mention PPMS is characteristically known to cause more damage in the spine than in the brain and one of the classic tests that determines this form is that you do not respond to steroids as it is not inflammatory. Well, you do respond, just not well. • SPMS- (Secondary Progressive) this one is a bit confusing, it starts out as RRMS and about 50% of people with RRMS will end up with a SPMS diagnosis within ten years. This is kind of like a combination of RRMS and PPMS. I feel this is more due to dr error as they are so quick to point to MS but not take the time to figure out exactly what type you have before they put you on drugs. • PRMS- 5 % of people who have MS are later diagnosed as PRMS (Primary Progressing Multiple Sclerosis). With PRMS, you have a steady increase in symptoms with the added unpleasantness of exacerbations (flare ups). I am not sure how the determination is made between PPMS and PRMS. Personally, I have PPMS (or so I am told) yet, I still experience exacerbations; somehow I am not in the PRMS category. My most recent trip to the doctor was as always, a major source of stress and frustration. I am not sleeping, when I do sleep I move constantly and I wake u p in pain. On a good night I get 4 hours of interrupted sleep. I have been on every sleeping pill they offer, and was on Ambien CR at 12.5 mg and was still ending up taking more than one if I wanted to sleep. Which of course lead to the other problem…running out of pills and not sleeping for half the month because they can only give you 30. If that wasn’t ridiculous enough, some moron in California wrecked their car and blamed it on the Ambien. So Congress intervened and decided no one was allowed to have more than 5mg. Dr changes my prescription to 5 and I slept for 6 days before I was out of meds. He was then able to increase it to 10 mg...woo hoo. Then he wanted to put me back on 12.5 but of course since Congress knows better than any of my doctors… my insurance denied it. I have been on this medication for over 2 years, my body has gotten used to it and it no longer works. I made the mistake of asking for something else. I was told no. Not because I am on too many medications, not because the next step is highly addictive (mind you I have been on morphine for 3 yrs), but because I refuse to go back on Tysabri. It does not seem to matter that Tysabri made me sick 2 weeks out of the month, and it ran a risk of killing me. None of that seems to matter because it stopped me from growing new lesions. I am not saying that all doctors are idiots and I am not saying do not try the DMDs. What I am saying is that you need to listen to your own body. You need to be able to determine for yourself if something is helping or not. This is a decision that you and only you have to live with. At the end of the day the doctor gets to take off his lab coat, go home and have a nice evening. You get to go home with not only this drug and all the effects of it, but the MS comes with you. It sucks, and there is not a damn thing anyone can do about it. Some people do great with the DMDs, and some do great with Tysabri. I hear stories all the time of people looking forward to their next infusion because it made them feel great and gives them energy. I was the opposite. I went home after an infusion and crashed, and then I spend 2 weeks fighting both a sinus and urinary tract infection. And any time anyone came near me with germs, I got sick. This is not an easy way to go when you have two children to take care of. I stopped the TY when I was sick almost a year ago with my 3rd round of the flu. Then I broke my foot and ended up getting surgery, then I broke that, and on and on for a year. I got 2 infusions between the 3 surgeries. And I got sick both times. I have finally come to the conclusion I would rather not spend my time being sick and I will just deal with whatever this disease throws my way. I tried Copaxone, had no effects from that at all until my MRI showed I grew 11 new holes while on it. Then I tried Avonex, which gave me flu like symptoms with every shot and then I broke out in hives because I turned out to be allergic. This knocked Betaseron and Rebif off the list because they contain the same ingredients. So we moved on to Tysabri. I feel like I have run out of Band Aids and my doctors refuse to allow me to live life the way that I want. Then I remembered that my doctor’s word isn’t law. In fact, last time I checked I pay them to provide a service, thus they work FOR me. And if they refuse to get on board and do things my way, I will replace them with doctors who realize I sign their checks. I do urge everyone to watch out for doctors who are quick to hand you a Band Aid instead of offering relief.