Dreaming of dear Lady Sleep

Sleep is a blessed curse that taunts me in the night. She is an ellusive creature who shudders at the thought of our togetherness. The traps I set are futile as she finds a way to escape me every night and I am left a shadow of my former self. I miss her. Like the love I feel, or the air I breathe, I cannot seem to function without her. Why does she torment me so? Does she not see how I long for her company? Can she not feel the pain that is caused by our broken bond? Oh dear lady sleep, please come back to me. As the sun sets and the moon shines from above I long for you. If you come back to me, I promise that I shall love, honor, and cherish every moment we spend together.

OK, so I have decided sleep is obviously a woman. And somehow I have managed to piss her off. They say hell hath no fury like a woman scorned, so obvioulsy she is one pissed off little lady!

Sometimes you are damned if you do and damned if you don't. Tramadol... supposedly a great pain killer as it is supposed to block the pain receptors in your brain. WRONG! For me, it gives me a headache and makes my neck hurt. BUT... if I take an Ambien afterwards, it makes everything stop hurting and I turn into a zombie before I fall into the bed and sleep like the dead. The only problems of course being that it's addictive and when I wake up I feel like there are weights attached to my arms and legs and my brain hurts. It feels like my skull is shrinking and there is just not enough room in there for my big giant brain.

Doc decides to add Ketoralac, an NSAID. (Non-Steroird Anit-Inflammatory Drug) which by the way has about the same effect as taking two tylenol.

This leaves me with 3 options:
* Drug up before sleep and feel like crap all day
* Just take the ambien and get a few hours of sleep but no enough to function
* Take nothing and skip sleep all together.

Yesterday I decided the pain was not unbearable, it was still there but not that bad. So I decided to take and Ambien and get some shut eye. Ambien and I have a Love Hate relationship. On the one hand, it shuts my brain off and puts me right to sleep. On the other hand, it only stays in your body for a few hours. It does not make me groggy in the morning and I don't sleep through my alarm going off. These are very good things. Except... I no longer sleep through my fiance's alarm going off either. And once I awake, that is it. Sleep is over, time to get out of bed before the pain in your back renders you immobile. I love that it puts me to sleep, but I hate that it does not allow me more than a four hour window of sleep.

A lack of sleep does many things to a person. I forget words, I have a hard time forming sentences, and most importantly, I feel an overwhelming urge to just kick the living shit out of anything that moves. Especially those people who feel the need to wake you from a much needed sleep. This morning I was woken up by a hand shaking me and asking me to do something (I assume "roll over" as there was a shaking hand on my stomach and some grumbling between snores coming from the other side of the bed). Three minutes later the alarm goes off. This is about the time my bladder reminds me it's time to get up. I get up, I make coffee and 45 minutes later the grumbling snoring shakey hand man come stumbling out of the bedroom. YAY! It's time for him to go to work. I can finally get my bed back.

I go crawl back into my bed, pull the covers up around me and.... And I lay there, then I turn this way and that way and no matter what I do I cannot get comfortable. Sleep left my bedroom at 2:45 this morning and she has no intentions of returning. 3:30 this morning I decided to have a cup of that coffee I made. I have been up for over 5 hours and it is not even 8:00 AM. This is ridiculous. On the plus side, I stopped crying. I think I am too tired to cry.

It's my BLOGY and I'll bitch if I want to!

And the MRI shows once again....IT'S PROGRESSING!! I now have 12 lesions on my spinal cord ranging in size from 9mm to 74.7 mm. The doctor is worried because it is progressing so fast and I am terrified of life right now. I really don't know what is worse, the idea that this disease is trying to kill me or the idea that it may not succeed and this is the quality of life I have to look forward to.

Every time I am alone, I find myself having crying fits, which is highly out of character for me. I am not a crying kind of girl. But I can't seem to shake this sinking feeling. Each day this disease seems to get worse and worse. I never even thought MS was even possible until I was diagnosed last October. Then I was told it is relapsing remitting and it will go away and come back. Then I was told it's looking like secondary progressive and now I am being told it is progressing faster than should be possible. Neuro started me on Avonex, but already believes it is not going to work and has already planned to switch me to Tysabri in 6 months.

And I am still not working, and I am at home feeling completely useless. I have no energy to do anything. I am now on Tramadol and Neurontin and Avonex and Ambien. I don't know if it is just the frustration of this stupid disease or the increasing symptoms or self pity or maybe even a side effect of the meds but I can't stop crying. I don't cry when my daughter is here and I don't cry in front of my fiance or my friends and family. And I am alone a lot lately now that my daughter is in school. Which leaves me time to think, and then I can't help thinking how the hell my life has turned into this and I lose it all over again.

What sucks is "You look so good!" yet I feel like I am trapped inside of a torture chamber and I have no way to escape. You can't tell by looking at me that my legs are on fire you can't tell that it feels like my skin is trying to crawl away. You can't tell that I cannot see clearly out of my eye or that it feels like I have three knives sticking straight into my spine. You can't see the torture that my mind goes through when I forget a word, or I forget where I am going or why I walked into this room. You can't seem to comprehend my new phobia of stairs, or daylight, or driving long distances. The dread that washes over me when it's time for bed because I don't know how bad it is going to hurt to try to lay down and I have no idea what new torture my body will invent the next day. You don't get to feel what it's like to hook an IV into your arm and pump yourself full of toxins that make you pray for the mercy of death as you watch your body respond and you gain 9 pounds in 5 days. You don't get to experience the panic that takes over when you get so much as a sinus infection because you know your eyes are going to take the hit. But I LOOK great...when I'm not bursting into tears that is.

The depression is a real bitch. That is one of those side effects they warn you about but you just don't know quite how to prepare for it. And yes, I do realize how much worse it could be. And I am grateful that I can still use my legs, and I can still swallow and I can still get from point A to point B on my own. I do know that it could be so much worse, but that doesn't make it suck any less. That doesn't make the hopelessness fade any faster or the fear subside.

Who knows? Maybe I am just going insane! That is what happens when you obsess over things. I don't think I have spoken to one person with this disease who doesn't obsess over it. It's not something I do on purpose but when you have something attacking your body and you feel the effects of it 24 hours a day you tend to think about it 24 hours a day.

I just felt like venting!

So it's been a while since I have written. Where to begin..... Well, we moved again. And I cannot get internet access at the new house Thank you verizon!!

Moving caused all of my old symptoms to show up along with a few new symptoms and the fact that ALL of the old problems never went away(all but a few minor ones went away but those few continued to get worse).... the doctor now thinks I am secondary progressive. Wants me on Avonex right away to try to slow the disability and I have another MRI scheduled for tomorrow. Because I have thyroid issues and heart issues already there is a slight chance the Avonex could be fatal. But if this disease continues to progress at the rate that is I am looking at being in a wheelchair in the next year. These are my options. Ignore it and lose more and more functions or try to treat it and hope that it doesn't kill me. AWESOME! So I am a little stressed out which is not helping anything and I am finding myself having crying spells that last from a few minutes to a few hours.

Oh did I mention Avonex causes depression....and I haven't even started the meds yet. In the mean time I am on Neurontin to help stop my skin from crawling right off of my body....and it's not working.

And neither am I. I am still not working. I cannot stare at a computer for more than an hour without triggering the optic neuritis, I cannot stand for more than an hour without my back spasming and my feet and legs feeling like they are on fire and I cannot lift anything over 10 pounds. I have no idea what it is that I am supposed to be doing for a living as every job I have ever had requires at least one of the above mentioned. YET... I am not disabled enough to be disabled in the state of Virginia. But don't stress it makes MS worse.

And to top all of this off my daughter starts school (Kindergarten)in 2 weeks and I have no babysitter out here in the sticks as I don't know anyone and I can't get her on an "as needed" basis with daycare, so her first day of school i get to pick her up early so she can go with me to my neurologist appointment because to reschedule it requires waiting another 3 weeks to get in. I am frustrated and overwhelmed.

On the plus side I finally heard back from Johns Hopkins who sent me all of the required paperwork to schedule an appointment. I will fill that out and see what happens. This year has been a rollercoaster ride and it doesn't look like it is ever going end and I am tired of the hills and sick to my stomach and I really really just want to get off!

Weekly Check In time!

Let's see, the good news or the bad news first? The bad news is kind of funny so we will start there and end on a happy note.....

Yesterday I managed to pull a bonehead MS move... Falling UP the stairs. Now let's face it, I have never been one to do anything half-assed. Not only did I manage to fall up the stairs, I managed to land on my big toe causing an obviously broken toe and a suspected broken metetarsal too. Which hurts like the devil, but does make a funny story. Especially considering I am just getting over the sprained ankle on the other foot from last weekend.

The diet is going great. I have lost another 3.4 pounds since last week for those who are keeping track that makes 8.4 pounds in the last 3 weeks! I have been craving avocados for the last few days. I have never craved avocados even when I was pregnant, but hey I got 8lbs saying I can eat a few if I want. So that is my update.

No major MS symptoms besides the feeling liek something is touching my back when it is not and the lightning bolts. It doesn't hurt, I can see, i can walk, and I am able to feel my legs so i am still not calling the neuro.

I do NOT regret not trying the Rebif because in general I feel great. And I highly recommend this diet to anyone who wants to try it. Not saying it's for everyone, just saying it seems to be working wonders with me.

Exciting new changes and another 2 lbs down.

Welcome to the end of week 2. I lost another 2 lbs. I have done great at sticking to the new diet. Except for the dark chocolate chip brownies I made last night. But in all fairness I started working out again this week and DD and I went on a 2 mile hike yesterday and another 2 back and my guilt made me do another hour of yoga last night before bed after I finished all of my ebay listings. Yes, it was 1 AM but I have found I sleep better after an hour of stretching.

Some funny things I have discovered.... Yoga isn't as easy as it used to be and it is going to take a lot of time and effort to get my full balance back. It's also a lot harder to do now that I have a gut and I am not as bendy as I used to be. Yoga used to be my "thing" then I had a kid and a full time job and a hour commute each way and dinner to cook and baths to give and .... you know how it goes.

So in my discovery that yoga isn't as easy as it used to be I found I would benefit greatly from a balance ball. And ode to the wonders of Super Target... The ball I was looking at was $27.99 but then I found the Biggest Loser set with the ball and resistance bands on clearance for $9.98 Can't beat that!

Now let's talk realistic goals. Realistically I would like to tone up, improve my balance and lose no less than 30 lbs. Realistically I will not be able to do that in 2 weeks time it is something I have to stick with. Realistically I would like to be able to make it through my old yoga routine without falling over or getting the shakes like I am now.

The MS updates: I still have the lightning bolts when I bend my head. And a new thing is when i get out of the shower and dry off and hang my towel up it feels like the towel is still rubbing my lower back. This lasts for about 5 minutes. It doesn't hurt it is just annoying and no I am not consulting with my neuro about it.

Overall, I feel better than I have in a year. I am starting to feel like me again and it is so nice to be able to do things again! My daughter and I spend no less than an hour each day doing something fun like going to the park or hiking through the woods or hitting the beach. It is going to suck when school starts and I have to go back to work. But the business although it is doing pretty good still isn't enough to justify not working. I do plan on keeping the business after I go back to work and only plan on working part time. So for now life is good.

I realize this could change at any moment so I am going to live it up as long as I can.

Update on the diet/ herbs/ vitamins

Tomorrow marks one week since I started my new diet and became a fish-etarian. I have cut out caffeine except for the ONE cup of coffee I am allowing myself to have in the morning. This was a HUGE step for me. Before I would drink no less than 4 cups of coffee and probably 4-6 glasses of super sweet Iced Tea. And any trip to the gas station warranted a Pepsi.

I force myself to eat breakfast now. I don't eat eggs, haven't since I was a kid and that is not changing now. Breakfast is pretty easy, a bagel and cream cheese or one of my many varieties of fruit smoothies with yogurt, and my cup of coffee. Followed of course by my 8 oz of aloe powder/ water mix which I normally use to wash down the first of my three part vitamin ritual. (Omegs 3-6-9, B12, Selenium)

Lunch is raw veggies, normally a salad which I use a variety of things in to create different kind and flavors. Yesterday was Spinach with mushroom, tomato and onion. Today probably citrus asparagus mix with apples. Followed by part two of the vitamins (Omega 3-6-9, Vit C, Zinc, Calcium).

Dinner is the only time I eat meat and by meat I mean fish, maybe chicken. If I eat meat at all. Last night I made the BEST manacotti with spinach, mushroom, onions, zucinni, cheese and topped with creamy pesto basil sauce. I also have some kind of salad with dinner as I am increasing my veggie intake. Again with the vitamins (Omega 3-6-9).

I also keep an herbal tea concoction in the fridge which I drink throughout the day. Green tea, Chamomile,Elder Flower, Yarrow Flower, Peppermint, Rosehip, Cinnamon, Ginger, Safflower, Licorice, mixed with Honey. Which has replaced my Iced Tea. yes it's a lot of stuff, but really it's only 4 different kinds of teat that I combine when I make it.

I have also increased my water intake, forcing myself to drink those 8 glasses a day. And I snack on fruits with cheese or yogurt when I want something sweet.

The results:
The lightning bolts when bending my head are still here but barely noticeable. I have actually increased my food intake I am eating a lot more than I used to... but I lost 3 pounds in the last week. None of the other MS symptoms are back. I feel more energetic, which could just be the psychological effect of putting good stuff in my body. And the one surprising thing... my face is clearing up! I have been having breakouts since my first round of IVSM. I feel amazing.

The only downside is that I am still cooking normal foods for my daughter and fiance. He doesn't like fish, she doesn't like anything with spices so she won't eat my fish.

Natural Healing? No I will not give up Gluten or Dairy!

What happens when you have some random disease that keeps kicking your butt and your best friend is a nutritionist? Well, eventually you turn to them for help. Now I have followed the research on the gluten/dairy free diets. In theory this is a great idea. But in the real world not so much. I mean is life worth living without pasta and cheese?? Not in my house it is not. When I get stressed out, I make bread. Sometimes I make cheese filled bread. And no, I am unwilling to give these things up.

I am willing to make a few changes. I was even convinced to start drinking aloe juice. I have replaced my giant bag of medications with a giant bag of vitamins and my tea drawer is now stocked full of teas and herbs as the way it used to be before I was diagnosed with the MonSter.

I have decided to go back to a mostly vegetarian diet. I didn't eat meat for 3 years. I was far from vegan, like I said I like my cheese too much. Note that I said mostly vegetarian diet. I don't see myself going back to strictly veggies and fruits. But with summertime approaching and the abundant sources of fresh fruits and veggies I see no reason not to center my diet in this department.

I am doing this for two reasons. I want to lose weight and I want to feel better. When I gave up meat before it was because my stepfather had cows and I became attached to these cows, I fed them and pet them and named them. One day my favorite one was sent to be slaughtered and that is when I gave up meat. Obviously I got over this and went back to thick juicy steaks. I have also gained a lot of weight since then and with the added weight and now the MS crap I just don't feel healthy. It is time to make a change and since I am refusing the Rebif for now I need to find a better alternative.

I did discover something last night that I thought I would share. You know what helps build myelin? Omega fatty acids. Yes, these too have been incorporated into the diet.

And my little girl turned 5 today! She will be starting kindergarten this year. Where does the time go?

And I just finished #7!!

Well, it has been an interesting couple of weeks. Seems they messed up MRI #6 so I got to go back in this morning for a retake... yeah that makes #7. Wasn't so bad though they got me in and out pretty quick.

Yesterday was my Darling Daughter's birthday party. We all had a great time, my house is trashed I will be spending all day cleaning up but it was worth it. The whole family came out, even the adopted/extended family. My ankles started protesting last night since I was on my feet all day.

So here is the deal.... my vision has returned to normal, I have no numb spots, no more lightening bolts down my spine, no more back spasms, I am actually sleeping at night time, and I have not been on ANY meds in over two weeks. I feel like I have my body back. Other people are noticing too. There is color to my face again I can walk in the middle of my rooms where before I was always within reaching distance of a wall. My daughter and I are enjoying the warm weather and playing outside and walking and I can see/feel to drive. I no longer feel like a prisoner in my own house.

I spoke to the pharmacist about the Rebif. He tells me that only 3% of people who take it develop thyroid disorders. What about the people who have already been diagnosed with thyroid problems?? How does it effect you then? For that I am told to consult my neurologist before starting the drug. The more I think about it the less I like the idea of being on this drug. So I have made the decision not to take it, which is something the neuro and I will have to discuss when I follow up with her next week.

One other note... The latest MRI showed the giant lesion in my brain is active again. Not that it really makes any difference seeing as there is no drug to effectively treat it or stop it from growing.

For now I have decided the doctors know plenty about this disease but it is true that it effects each person differently so when it comes to my individual case they are clueless. Symptoms were unbearable before I started the Copaxone... the new symptoms and increased intensity of all symptoms I got from the Copaxone and the steroids was enough to make me want to give up. Had I known how much worse it would get I would have chosen to live with the symptoms I had to begin with. You see the symptoms were unbearable when i started the Copaxone because I had no idea they could get worse.

Hindsight is 20/20 and I can say the "unbearable" symptoms that started all of this was nothing compared to the person I became over the 4 months I was pumping my body full of useless medications that did nothing but make it worse.

I also know that this is not a disease that is just going to go away and to think I will never be on meds again is ridiculous to say the least. I know that it is going to come back I know that it could be worse than ever before. But I also know that for now, I need to do what I feel is best and that does not involve injecting myself with a drug that will make me feel sick.

And another MRI!!

Man I am starting to fear walking into my kitchen because I am scared the utensils will start flying at me! This is MRI #6 since October. This time it was to look at my optic nerves and my brain. Doctor is concerned now about the ON which is of course going away now that I have stopped the Copaxone. I feel like me again!

The neuro wants me to start Rebif.... I am having a really hard time with this decision. I am feeling so much better now that I have stopped all of the meds and now she wants me to start another one which has had nothing but poor results to go along with the negative side effects. And the side effects are astounding! I really don't think I want to put my body through all that for something that has a 35% success rate. If they printed that it has a 65% failure rate nobody in their right mind would try it.

So I am looking into more holistic approaches to this disease. You see before I had MS I was able to treat any illness or insomnia or ache with a simple tea therapy. The only time I ever went to the doctor was when I had strep throat. It's the only thing I couldn't cure on my own. Even the majority of my pregnancy was treated herbally.

I don't know. I ramble. But there has to be a better option.

Wow, you look great! Of course I do I stopped taking Copaxone!

What bad could come from an MRI you ask me? Normally I would tell you nothing. It's the least painful procedure I have ever had at a hospital. Yeah, I get a little tensed up after more than an hour in the machine, but it's really not that bad.

My fiance on the other hand, tells a different story. He went in to have an MRI of his leg done. Should have been a simple thing. After waiting for hours for the Army doctor to get him in the machine, he was finally surfing the tube. Mind you, he has a steel rod in this leg from a previous injury. He comes home in pain and says his throat hurts.

So begins the case of walking pneumonia. His MRI was on a Saturday evening and by Sunday afternoon we were in the car on the way to the emergency room. Two EKGs, a chest X-Ray, Bloodwork, mouth swabs, nasal swabs.... We were there for 6 hours! He didn't care they had given him morphine for the pain, he was out like a light. I was finally able to take him home with a diagnosis of bronchitis or walking pneumonia and a z-pack.

Of course by Monday night I was getting the yucks and by Tuesday morning I was a mess. I ended up calling my mom to come take me to the doctor and take my DD to her dad's house. Hey wouldn't you know? I have walking pneumonia says the doctor. Awesome! I also had a fever of 103 and wanted to kill any living being that came within a 200 yard radius of me.

Fortunately the antibiotics seems to be working, even thought I am still not "cured" of the crud. During my fever induced psychosis I managed to skip a few doses of my Copaxone. I was about to inject myself one day and decided that my body had enough stuff going on and it didn't need anything else to fight it off. I made the decision to stop the Copaxone until after I finished the antibiotics. Tomorrow is my last day of the antibiotics and today is my follow up appointment with my neuro. Boy is she going to be happy when I tell her I stopped taking the Copaxone and I don't intent to start again.

Since stopping the C I have regained feeling in my feet, I no longer have lightening bolts flashing down my spine every time I bend my head. I can lay in my bed without my back spasming, and I can actually fall asleep before 3 AM. I still have numb spots in my legs, and I am still having Optic Neuritis issues, but I am feeling better than I have in months. Now I know this could be a coincidence that after eight months this "flare-up" is finally subsiding but I don't think so. I think it was the copaxone making it worse.