Out with the old, in with the new

Let me reflect a little, about my personal 2010.

If you know me, you know as well that I never make resolutions. I either change on the spot this very second, or I'll never do. That easy it is.

Last year was the most painful in my MS career. Several months were contributed to what is referred to as MS-Hug. I don't want to get into it any deeper, because when I write or talk about it, it triggers the pain often. Let me just say that my maximum dose of pain relievers didn't help anymore, so I had to switch to opiates and those cause heavy vomitting. To top it off I don't exactly know what causes the pain attacks to occur. Just when they're over you wonder what is missing...

I also recognized that I can reduce the pain if I do Taiji. So I've learned a little bit of Taiji in 2010. I also found out that I should skip the warmup, because it causes my chest to get squeezed together which could trigger the Hug as well.

Stress isn't good for MSers, so what I did was that I quit teaching English to that bunch of kids I taught at home. It was difficult anyways, due to lack of teaching material and proper space.

To continue to keep busy and my mind occupied I started (finally) reading all the Harry Potter books. To make it harder on me I do this in English (the adult edition). And I'm stuck with book number 6 right now. One more to go.

To reduce my stress and concentrate on MY family and MY household and MY life I also involved my aunt with caring for her sister, my mother. Which means I don't call twice a day anymore, nor do I visit weekly, just every other week. This takes a load off my shoulders.

Still, the confrontation with my aunt, on a regular basis stresses me a bit. Which all came out on Christmas. She had the nerve to turn down my gift (a picture frame of our family). She said it was too kitschy for her. She took out the photos and gave the photo frame back to me (!). My mom has it now...

And then I got into an argument with the mother of my Goddaughter Vanessa. To make a long story short: we arranged (one year ago) for a get-together on Christmas, where I was supposed to cook Mexican for the family. We got mixed up on the exact date, which wasn't my fault, but she wrote I would act embarrassing, behaving like a maniac because of that, and if it was too much for me to see my Goddaughter twice a year, she would save me time and money and we should just leave it at that.

Well, that exactly didn't do my MS any good, as we all can imagine, but my boyfriend and daughter were extra nice and helpful over the holidays. My best friend Karin filled in with her family. I invited them instead, to cook Mexican for them and they highly appreciated that!

They had 3 losses over the past years and a rather odd holiday season ahead, so they were delighted and grateful :)

Furthermore we're entangled in the whole graduation process of our daughter, which will be in May 2012. But the grades are just fairly okay, so the poor girl stresses herself out and us with it...

To top it all off, her graduation trip will be to Ireland (in September 2011) and I'll just go and shake the money tree outside, if you know what I mean? *lol* ;-/

It wouldn't be such a big deal, if we wouldn't have safed up for a large US trip this summer. Yes, family and friends over there, we're actually really coming. I paid the flight tickets in full already. All we have to worry about now is accommodation and the route. The dates are set, the guinea pigs taken care of. But... I need me a fantastic camera to take the most precious, breathtaking photos to post on my blog then, guys! *hint hint hint* My birthday is coming up!!! Got it?

My mother stayed a lot calmer last year, but the dementia is proceeding, one can tell.

My boyfriend had a tough year again, getting laid off, but he became a freelancer once more. Business is very slow. People don't waste money anymore and insurance surely is a branch they're not generous at, trust me!

Our daughter gets a new laptop anyway (remember the money tree outdoors...) and to make our holidays complete she lost her ID card at a club, or after.

Do you know the song: "Money makes the world go around"?

Oh and... in our apartment we have heavy mold to fight, and I came to realize that it really IS me airing and heating the rooms wrong. Now I found me some "biological" stuff to bleach and get rid of the mold. Biological in terms of us not having to wait for springtime. We can remain in our rooms, so can our daughter and her guinea pigs, without doing them any harm, so they say. Oh well. I'll report if we've dropped dead, ok?

As you can tell, it was a rather slow year, at least for me it was. My left leg begins to hurt really bad, so as soon as it gets warmer out I'll start going on walks. Maybe it'll reduce my weight as well?

At the moment we're still stuck in the snow and *happy to announce* we actually HAD White Christmas! It was wonderful, but now... melt snow, let spring come soon!

The only thing that keeps me up atm is the perspective of a California vacation. No clue if I'll be able to manage and beat the heat, but I discovered me a page with cooling undergarments :) California, here we come!!!

Guess that's all I had to fill you in about.

I would love to read your comments below.

*waiting desperately*

Let it all out!

You wanna know what I've been up to lately? Above you see... *no comment* In German we have an expression. It goes 'to drive out the demon with the Beelzebub'... Meaning, in my specific case, that the pills that help me against my MS pain, have the nice little side effect you see above. And if I'm really lucky I throw the pain reliever right back up through this doing so. *ugh* It has been going on for quite some time now, it's the fifth week where I throw up every other day almost, or have the so called MSHug. It's a compression feeling around your whole chest. Like a vice grip, or an elephant sitting on your chest, or all together. I counted 16 of them hugs. So yesterday I ended up having to call the ER and my doctor talked me through several hours of pain. Over those five weeks I've lost at least 8-9 pounds or so. :-/ Enough said. 

                        

Besides that it was back to school day in Bavaria yesterday... And to my surprise my youngster was rather eager to start, or better said, continue studying. Which she did all summer through. What made it easier was that we didn't go on vacation this year. I'm saving up money for our next year's big overseas vacation.

Next thing you know: my 74 year old mother got herself a boyfriend (aged 88)...

                              

and she has nobody, so she says, to talk about him. Folks, do I really need to know how elderly sex funtions??? *yuk* No, not really. *lol*

Furthermore I've started to read this cool new (German, sorry) book. It's called something like 'Well, I'm offline then'. This guy, a reporter, is moving. While doing so it takes forever for him to get his internet connected again, as some of us have experienced maybe also? Anyway, as an experiment on himself, he doesn't use neither internet nor cell phone for 6 weeks! Go figure. I'm highly interested in the subject, because that's what's probably gonna happen to us next summer? This is it:

                       

My teenager wishes my next blog to be about 'The best of both worlds'. So since a couple of days I'm thinking about what I like best about America and what I prefer about Germany. Most stuff I come up with is food stuff *lol*, sorry, but I just love to eat, what makes the first paragraph of my today's blog extra hard, as you can imagine. And I want to end my blog with a name for a country I would love to make out of them two. So far I came up with 'Germica' (sucks) and 'Amerany' (weird). *laughing* If you have any suggestions, just let me know.

And this is what I'll look forward to, all considering my top paragraph today, please! We're going out to eat, and we have a big coupon (50 bucks) to an Asian-Mongolian restaurant. It has an all-you-can-eat-buffet. You pick your stuff and the chief prepares your personal plate on a hot stone. I'm gonna eat my way all through China and Mongolia, I suppose. *giggle* ;-)

Well, let me close with wishing you a good rest of the week, wherever you are, whatever you do. I'd be delighted if you'd spread the word about my blog, and if you'd regularly stop by and comment. My older blogs are interesting as well, trust me. They were just not posted here, so I moved them over here. Keep scrolling and happy blogging to all.

2007 August - Pain

August 13^th, 3.43 am

The society for pain and pain relief in Germany sent me a scale. It goes from 0 'til 10. If I should identify the pain that woke me up, it would be a 12 at this second. I feel like dying. I'm all alone with this unbelievable pain. I can't move. My chest feels as if I'm in this former described pressure of a lathe. I need to get an ice pack and place it on my chest, right now. Like Crystal explained it before… NOW. I can't stand up, I'm freezing already, almost shivering. I need to close the shutters, the street lights bug me, I'm cold, I'm hurting, almost crying, alone. He is working, in the other room, on his reports, on the home network, to fix something he can just do at nighttime. She is sleeping. I wanna go back to sleep, also.

3.45 am

Finally I get a hold of my Ibuprofen, laying next to my bed, grab the water bottle, swallow. I remember every word that was written on the forums by Tim, Jimbo, Crystal, Karol, Becky, Carrie, Mrs. Swenson, Stan and others – oh I would write perfect blogs in bed if I could, I think about recording them on my mobile. But the pain struck me like lightning. This summer I got stung by a bee, in the finger, and it feels like 10 times this pain at the moment. Finally… I get up, get dressed warmer, close the blinds, grab a wash cloth, go to the freezer, take out one of the ice packs, stick it into the wash cloth and I'm so happy when I can lay back down and place it on my chest. Tears run down my face… I hate this, when I'm so weak. I'm a strong woman, d… it. Not this whimpy me. A friend of mine got his foot cut off, that's pain and a reason to cry, some other friend of mine was seeking advice in the forum, because she doesn't know which cane to buy, that is pain. People who are diagnosed freshly, starting treatment, don't know what to expect next and how to handle it, that is pain. And me? I feel sorry for myself, burst into tears… It makes me angry to have these feelings. I fall asleep, finally.

6 or 7 am

I wake up again, must have been fallen asleep, and start thinking again. It's Eylene's birthday. I shouldn't forget to send her congrats. Can't forget to post a blog about sensibility problems, I found it in one of my MS books. A table about it, which describes it pretty exact. I'm so dead tired, I can't find words for it, let me sleep, I don't wanna ache. It has been good again for such a long time, but yesterday the fall weather stopped, and it became summer again, hot. I know what he will say: no wonder, you sat in front of the computer for 3 days working on your page, that's the bill for that! Well I felt pretty good these days, so let me. I know I'm gonna end up on my nose again sooner or later, let me be. And then I think of Crystal. What does he know? This pain has nothing to do with exaggerating, or overdoing it! It came out of the blue, out of nowhere. I would like to get my cool down vest out of the freezer, I'm burning up from within, I am so heated up right now! I lay down as flat as I can. I would need a massage, my back hurts. Would be good if I'd place an ice pack there, too. Then I think of people who told me that I just have to get back on track (you hear me Crystal, that's exactly what your bulletin was about?), or other ones who said I look so healthy and good, that must be a joke that I'm retired being 41 already. I feel like crying. Cry myself to sleep again.

9:20 am

Got enough rest. The pain starts to come back. I don't wanna take another Ibuprofen, that would make it 1200 mgs today (!). Gotta ask the doctor for 800 mgs, can't forget that! My brain says go, get the pill, it's an 8 on the pain scale at least, so I give in, I don't wanna hurt today anymore, eventhough I have a bad back ache. I wanna write this blog, hope I can remember all the words. I think I'll have to lay down a lot today, maybe that'll help? You know, these days are the days when people don't see me out in the bout. That's when I don't socialize, when I feel like a shot deer, soothing and licking my own wounds. But you can't tell I've got Multiple Sclerosis just by looking at me. And never forget: I'm one of the fortunate ones who aren't affected that badly. I can still walk, see, think (sometimes better, sometimes not), move all my extremities. Ain't I lucky? But I suppose you don't wanna exchange your health with mine, do ya? ;-)

And I thank The Lord each and every day, that I feel SOOOOO good, seriously. That I have everything I need, that I have a good life, and such cool friends like YOU! Just wanted to share some of my bad times.

2007 August - The MS Hug

By Jimbo:
Does anyone else have this symptom?

It's banding around my entire mid section and won't ever let go. Years of this and I still cannot get used to it. The skin is numb all around (is numb the word?), my muscles feel like they are closing in on my insides and I know my guts are feeling the sting of it too. I don't even want to get into that.

How do you deal with a spasm (is that really the definition??) that doesn't go away? The whole stomach and the back opposite....A heating pad works until I try and lift something or play my instruments.

Anyway, I need advice about the abdominal spasm, that's the point of this message.

By Regina:
It sounds a bit like with my let me call it chest ache: it feels as if you're stuck in a vise-like grip, and the pressure on your chest grows and grows? This is how I feel sometimes, and I take Copaxone each day.
Anyway, so when that happens to me, and the additional Ibuprofen doesn't help, and the lying down as flat as possible doesn't do no good either, I found cold being of help. I have a special cool-down-vest, and as funny as it may sound, the freezing cold for up to 2 hours takes away the pressure, the pain.
Heat would be the least thing in the world to help!
Try this one.

By Regina:
I know the feeling, but two days ago I read about it here first! Can anyone explain it to me (in a more medical sense?). I've never read on German sites about it. My doctor says all I can do is take pain relievers, I found out that cold and ice helps me best and lying down absolutely flat. But... what exactly is it and where does it come from?

By Tim:
Being an acupuncturist, I would have to agree. Acupuncture would be a good modality. Personally, I would prefer electro--auriculotherapy because I feel it's more diagnostic and I have more control with it and can be more specific in my treatment areas.

What you have to understand with Acupuncture and auriculotherapy (which is a form of Acupuncture using reflex points in the ear) is that its main mechanism is to reset body control functions. By resetting these functions, the body will start operating properly and can heal itself.

The limitation is, if the damage is severe enough that the body has no way to heal it even if it was functioning properly, such as severed nerves (the eventual result of MS). As my one of my instructors used to say, "matter has its limits". So, while Acupuncture is extremely effective in resetting muscle tone and I use it extensively for that, and it could significantly help with the "MS hug". If the reason for the "MS hug" is due to severed nerves within the central nervous system, it may not be that effective. Therefore, other therapies that stimulate the muscle to contract may be required to reset the tone of the muscles.

So, I would focus on all three modalities. Acupuncture (auriculotherapy), stimulation of the mechanical receptors (spinal manipulation) and Russian stim.

The interesting thing with auriculotherapy is, within the first few minutes of treatment, you can tell whether it's working or not. The patient should experience a reduction in the muscle spasms that quickly. Once the auriculotherapy has minimized the spasms as much as possible, then you stimulate the mechanical receptors by adjusting (which should add another level of relief). If these previous steps don't work or have limited effect, then I would try Russian stim. The other aspect it considers nutrition, make sure the patient has plenty of potassium and calcium within their diet and that there are absorbing it. Low levels of potassium and calcium will also increase muscle tone and make a person more prone to spasms. If none of these work, then my toolbox is empty.
The MS hug is a good way to describe this.

I too use ice packs on the back of my neck and my head when I over heat (due to the summer anyway).

By Tim:
I've experienced the MS hugged for about 10 years now, on and off. I don't believe I've had it as severe as some of the people have stated. To me it is just a constricted band about 10 inches wide that wraps around my body at the lower part of the rib cage.

I'm not sure what the reason is for this, obviously is neurological of some sort. But there are a few distinct causes for muscle spasms. One of them is a decrease in the signal output of mechanical receptors. Each type of nerve has its own distinct job or sensory area. Some nerves carry pain, others touch, others hot and cold, and others detect mechanical motion. It is these nerves that tell your brain where your body is in space. Users also have the unique capability of inhibiting pain. That's why when you get hit in the arm with the ball, rubbing the arm makes it feel better. Rubbing doesn't fix anything, but it stimulates the mechanical receptors in the skin, which inhibits the pain signals from the blow. Hence the term "walk it off".

When the body interprets an increase in the pain signal (which is actually can be a decrease in inhibition) it interprets that area has been injured and does its best to restrict movement in that area by increasing muscle tone. The increased restricted movement now, of course decreased the inhibition to a larger extent. Which in turn would cause the body to try to restrict the motion even more. So the cycle begins. For me, what I had found, was when I was experiencing a episode of "MS hug", my thoracic spine was locked up. I would find that my thoracic spine had nearly no emotion/flexibility. I would have someone adjust/manipulate my thoracic spine, which broke the cycle, and the "MS hug" quickly dissipated.

The other thing with muscle spasms, is that the muscles require a certain level of stimulation to maintain the proper tone. If they don't receive this stimulation, the muscles try to compensate, to become more sensitive to any kind of stimulation and in doing so would decrease the threshold limit. When this threshold level gets decreased to a certain point, it seems that the muscles create their own signal (actually they are responding to neurological background noise, for lack of a better term) and will self constrict which will increase tone and go into spasms.

And I don't know if this happens with the MS hug, this is what happens in my legs and arms. The only way to break this cycle is to force the muscles to contract with stimulus, so that they reset their threshold to a higher level and thereby decreasing muscle tone and spasms. I do this by utilizing a technique called "Russian stimulation". This is a physical therapy technique, utilizing the electric stimulation in a specific frequency through adhesive pads placed over the muscles being treated. By forcing the muscles to contract with electrical stimulation, three things happen. 1) the muscles are actually getting exercised, and muscle loss is decreased. 2) since the muscles are being stimulated, their threshold is being increased and therefore require a greater or logical signal to try to fire. Hence the background noise no longer triggers a contraction. 3) because the muscle is being contracted and relaxed, there is increased blood flow into the muscle tissue which will also have a big effect on decreasing the tone and spasms.

With the "MS hug" there's also the possibility that the core muscles (the muscles that allow you to stand straight up) may be weakened by the MS and other muscles try to compensate for this weakness, they become overworked and spasms. Therefore, strengthening the core muscles may help prevent episodes of the "MS hug". But, once the cycle has started, you first need to reset the muscle tone whether it be with physical therapy or instilling motion into the thoracic spine to activate the mechanical receptors. Whatever seems to work best for you.

The thing to remember, is that your body is doing what it thinks is best. It's trying to compensate for the disorder, and doing its best to survive. It just sometimes gets it wrong. Sometimes the solution is worse than the problem. Sometimes the best therapy is developed when a person looks at what the bodies trying to compensate for, and focus on that rather than the symptom. Because if you can take care of what is trying to be compensate for, the symptom will go away.

Sorry if this seemed a little long-winded, but I thought it might help.


By Tim:
In the above posting, "User" was supposed to be "These nerves".
And, "emotion" was supposed to be "motion".