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.

Books

When young people think of old age and retirement, don't they think... I will do this, and travel there, and sleep in, and visit friends, and... read. Read the newspaper from the first to the last page. Read all the books I never had time to.


Well, I'm retired now for quite some years in the meantime, almost five or so, but don't believe I did A thing I wanted to. Extra super good cleaning, not just wiping round corners. Sleeping in? Huh! Forget about it. Let alone reading. I bought zillions of books, as it seems to me, but have I stuck my nose into them yet? No way! Why not? Because... time doesn't stand still for the others. They still 'have a life', go to school, go to work. I check if everybody is out the house on time, but they all seem to think if my g/f, mom has all time in the world, I have that, too. *lol* So I never know when my alone time starts. I still haven't established a routine.


I picture 60/70 years elders sipping their coffee, while holding on to their newspapers. I would like to start my day with studying the bible, or watching some Joyce Meyer preaching, then doing some major Taiji practice, doing a couple of hours of housework, until then around noon my day off would start. With watching Star Trek DVD's until I drop, or (as my title promises) with reading BOOKS.


Okay, it all might have to do with my illness. As we all found out in the meantime, little Gina has Multiple Sclerosis. That comes with lots of fun stuff, like symptoms and side effects of daily injections. Well, one of them nice things is that the cognitivity decreases. I can't focus that easy, or for too long at times. So seriously, I bought not a hundred, but maybe half of that, of new books, which I have not yet read!


And then there are some books I just NEED to desperately own, buy them, they get shipped in a heartbeat, I lay down, or sit down somewhere and start instantly reading and just don't stop until the very last page!
Why is that? With every movie or book I know in the very first minutes if it's worth to continue watching/reading, or not. With some books I don't even get through the first chapter, eventhough its titles were so promising.
Does this really have to do with my illness?
Or is it just me?
Or what is it??? You tell me!

In this post are a few books shown I literally 'ate' up, that fast paced I read them. One of them, titled 'Hummeldumm', is so hilariously funny, that my daughter thought I would die of laughing on my couch. I lend it to two more people and they felt the same. The author Tommy Jaud is travelling through Germany, doing readings of his own book, and I got me a ticket to one of them events. Can't wait to hear him, because they say he's immitating voices dramatically funny. :) That will take place in October, I think.

The second book I 'chewed up' was by Duane 'DOG' Chapman. An absolut must read. You should look into it. I love that guy and his wife Beth, and his son Leland. ;-)

Okay, John Gray's book 'Men are from Mars, Women are from Venus' I read, because I loved his tv appearance so much. He actually practices what he preaches about and it has been working for him for more than 20 years already. That I read all the way through.

And then there is an MS book about natural therapies. That I read because of the theme it's about and because it personally could help me, couldn't it?

The very last thing I made it at least half way through, is Montel Williams' 'Climbing Higher'. Another MS book, with information the normal human being, if he's not a VIP, just wouldn't get.


But other than those, folks, and trust me, I just loooove to read, always did, even being a little child, a teenager, a young adult, I haven't read in years. I can't even concentrate enough anymore to make it through magazines, or simple articles. Even newsletters via e-mail seem a problem if too long.


Will there be a cure for little Gina?
When? How? Or did I just not calm down enough, are there still too many ants crawling in my pants that don't let me pace myself and chillax? *lol* I don't know, give me your ideas on this subject.

2010 July - Does humidity make MS symptoms worse?

Q. Does Humidity Make Multiple Sclerosis Symptoms Worse?
Sunday July 4, 2010

So, here I am, having a great time on vacation in the desert. Yes, desert - gets pretty hot in the daytime, but, as they say, it is "a dry hot." I feel great - fewer symptoms all around - fatigue is almost gone, cognitive dysfunction is at a minimum (I can actually have a conversation that makes sense to me AND the other person), all yucky parasthesia in my feet gone or reduced to a little tingle. All this time I am wondering if this improvement is due to the fact that I am on vacation and determined to have a good time, having cleared my brain of all worries.

Then, it rains. And rains. And keeps on raining. It is the "monsoon season" here, apparently. This was accompanied by lots of lightning, which always brings on pretty insane tingling in my feet. When the lightning stops, I feel better and can sleep.

Then comes the next day, and along with it the intense desert sun, shining on all of those puddles and bringing humidity for the first time since I have been here. With the humidity came all of my old familiar MS symptoms, and a big ol' dose of crankiness, to boot. It did not get nearly as hot (by the thermometer) as it had gotten here in days past, but it felt gross (as did I).

As I type this, the puddles are dried up and the humidity is back to normal at 17%. I feel great again. As I contemplate my humidity = MS symptoms, I am trying to enjoy the last days of my vacation without focusing on the fact that the normal humidity back home around this time of year is 75 to 90%.

What do you think? It is pretty impossible to find anything about humidity and MS symptoms in the literature, as the scientists want to focus on things that they can objectively measure, like relapses, rather than things that we "feel" but can't be quantified well. I have to say, as an epidemiologist, as well as a person with MS, I feel like we (that is, you all and myself) are making huge discoveries with some of these "non-scientific" questions.

2007 July - Facts about MS

MS - The Disease

Multiple sclerosis (MS) is one of the most common diseases of the central nervous system. Today over 2,500,000 people around the world have MS.

MS is the result of damage to myelin - a protective sheath surrounding nerve fibres of the central nervous system. When myelin is damaged, this interferes with messages between the brain and other parts of the body

Symptoms vary widely and include blurred vision, weak limbs, tingling sensations, unsteadiness and fatigue. For some people, MS is characterised by periods of relapse and remission while for others it has a progressive pattern. For everyone, it makes life unpredictable.

What is MS?

Multiple sclerosis is one of the most common diseases of the central nervous system (brain and spinal cord). MS is an inflammatory demyelinating condition. Myelin is a fatty material that insulates nerves, acting much like the covering of an electric wire and allowing the nerve to transmit its impulses rapidly. It is the speed and efficiency with which these impulses are conducted that permits smooth, rapid and co-ordinated movements to be performed with little conscious effort.

In multiple sclerosis, the loss of myelin (demyelination) is accompanied by a disruption in the ability of the nerves to conduct electrical impulses to and from the brain and this produces the various symptoms of MS. The sites where myelin is lost (plaques or lesions) appear as hardened (scar) areas: in multiple sclerosis these scars appear at different times and in different areas of the brain and spinal cord. The term multiple sclerosis means, literally, many scars.

Quick Facts

• MS is a progressive disease of the nervous system, for which there is no cure.
• An estimated 2,500,000 people in the world have MS.
• More women than men have MS, with a ratio of 2 men to 3 women affected.
• MS is the most common diseases of the central nervous system in young adults.
• There are four types of MS: benign, relapsing remitting, secondary progressive, primary progressive.
• Sclerosis means scars, these are the plaques or lesions in the brain and spinal cord.
• In MS, the protective myelin covering of the nerve fibres in the central nervous system is damaged.
• Inflammation and ultimate loss of myelin causes disruption to nerve transmission and affects many functions of the body.
• While the exact cause of MS is not known, much is known about its effect on immune system function which may be the ultimate cause of the disease.
• MS is not directly hereditary, although genetic susceptibility plays a part in its development.
• MS is not contagious.
• Diagnosis of MS is generally between 20 and 40 years of age, although onset may be earlier.
• MS is rarely diagnosed under 12 and over 55 years of age.
• Life span is not significantly affected by MS.
• There are a wide range of symptoms. Fatigue is one of the most common.
• The incidence of MS increases in countries further from the equator.
• There is no drug that can cure MS, but treatments are now available which can modify the course of the disease.
• Many of the symptoms of MS can be successfully managed and treated.

Causes of MS

The cause of multiple sclerosis is not yet known, but thousands of researchers all over the world are meticulously putting the pieces of this complicated puzzle together.

The damage to myelin in MS may be due to an abnormal response of the body's immune system, which normally defends the body against invading organisms (bacteria and viruses). Many of the characteristics of MS suggest an 'auto-immune' disease whereby the body attacks its own cells and tissues, which in the case of MS is myelin. Researchers do not know what triggers the immune system to attack myelin, but it is thought to be a combination of several factors.

One theory is that a virus, possibly lying dormant in the body, may play a major role in the development of the disease and may disturb the immune system or indirectly instigate the auto-immune process. A great deal of research has taken place in trying to identify an MS virus. It is probable that there is no one MS virus, but that a common virus, such as measles or herpes, may act as a trigger for MS. This trigger activates white blood cells (lymphocytes) in the blood stream, which enter the brain by making vulnerable the brain's defence mechanisms (i.e. the blood/brain barrier). Once inside the brain these cells activate other elements of the immune system in such a way that they attack and destroy myelin.

Symptoms of MS

Multiple sclerosis is a very variable condition and the symptoms depend on which areas of the central nervous system have been affected. There is no set pattern to MS and everyone with MS has a different set of symptoms, which vary from time to time and can change in severity and duration, even in the same person.

There is no typical MS. Most people with MS will experience more than one symptom, and though there are symptoms common to many people, no person would have all of them. Common symptoms include:

Visual disturbances

• blurring of vision
• double vision (diplopia)
• optic neuritis
• involuntary rapid eye movement
• (rarely) total loss of sight

Balance & co-ordination problems

• loss of balance
• tremor
• unstable walking (ataxia)
• giddiness (vertigo)
• clumsiness of a limb
• lack of co-ordination
• weakness: this can particularly affect the legs and walking

Spasticity

• altered muscle tone can and muscle stiffness can affect mobility and walking
• spasms

Altered sensation

• tingling
• 'pins and needles'
• numbness (paraesthesia)
• burning sensations
• pain may be associated with MS, e.g. facial pain, (such as trigeminal neuralgia), and muscle pains

Abnormal speech

• slowing of speech
• slurring of words
• changes in rhythm of speech
• difficulty in swallowing (dysphagia)

Fatigue

• a debilitating kind of general fatigue which is unpredictable or out of proportion to the activity. Fatigue is one of the most common (and one of the most troubling) symptoms of MS

Bladder & bowel problems

• Bladder problems include the need to pass water frequently and/or urgently, incomplete emptying or emptying at inappropriate times.
• Bowel problems include constipation and, infrequently, loss of bowel control

Sensitivity to heat

• this symptom very commonly causes a transient worsening of symptoms

Cognitive & emotional disturbances

• loss of short term memory
• loss of concentration, judgment or reasoning

Whilst some of these symptoms are immediately obvious, others such as fatigue, altered sensation, memory and concentration problems are often hidden symptoms. These can be difficult to describe to others and sometimes family and carers do not appreciate the effects these have on the person with MS and on employment, social activities and quality of life.

The course of MS

It is impossible to predict accurately the course of MS for any individual, but the first five years give some indication of how the disease will continue for that person. This is based upon the course of the disease over that period and the disease type. (i.e relapsing- remitting or progressive ). The level of disability reached at end points such as five and ten years is thought to be a reliable predictor of the future course of the disease.
However, there are many variables in this scenario:

• a large percentage of people with MS (approx 45%) are not severely affected by MS and live normal and productive lives.
• there is a significant group (40%) which become progressive after a period of some years as relapsing-remitting.

Who gets MS?

Women are more likely to develop multiple sclerosis than men, with MS occurring 50% more frequently in women than in men (i.e. 3 women for every 2 men). Multiple sclerosis is a disease of young adults; the mean age of onset is 29-33 years, but the range of onset is extremely broad
from approximately 10-59 years.

What do I tell people about having MS?

Before you tell people that you have MS, you need to think about what they need to know. Many people will have no experience with MS or, on the other hand, know of someone with MS whose experience of the disease may be very different to yours. Your community includes people who are intimately connected to you and those whom you know casually. Your relatives, friends and employer naturally will want to know what has happened to you, especially if you have visible symptoms. They may also want to know what they can do to help. If you are honest with those close to you and let them know you will accept help when you need it, you will allay their worries and probably find them very supportive.

You can start with a simple explanation of MS and how it is affecting you at this time, so that people are aware of any practical support which you may need without imagining that your MS is any worse than it is. If you have a standard description which you use, it can help to ensure that you feel confident giving the information and that the details you give are consistent. Certain general issues may need to be quickly refuted - for many people there are stereotypes which surround MS (eg that everyone with MS ends up in a wheelchair) or misunderstandings (eg that MS is contagious). MS societies have pamphlets and brochures that will make the task easier. Casual acquaintances can be told if it comes up in conversation or if you wish. In this case there is probably no need for formal explanation.

Older children and adolescents need to be informed but may require a more careful approach. Although they can appear outwardly calm and possibly even indifferent, they are most likely very concerned. Their anxiety can be helped by information. Their concerns need to be addressed as they arise and they need to know that you are willing to speak with them as issues come up. The opportunity to read selected literature from the national MS society may be helpful.

Adolescents feel that they should be treated as adults, and if they are not allowed to play a responsible part in a family problem they can feel both hurt and resentful, and as a result may start behaving in a destructive way. If, however, their cooperation is encouraged they can become surprisingly mature and a source of strength. Trying to keep your problem to yourself will not spare them any anxiety.

2007 July - Experiences

My own experiences with Multiple Sclerosis..:
I understand it this way:
MS is simply just an inflammation of nervs in the brain and spine. That injures the covering of the nervs. If the nervs are hurt, depending on which location, it takes impulses longer to get anywhere in the body. Everything slows down basically.
So depending on which nerv is injured, the body has problems with for instance the sight, the speech, the memory, sleepiness (fatigue), feeling/touching, bladder, and all of ones extremities.
In my case it occured in autumn 2005, that my whole right arm turned numb all of a sudden, from the fingertips up to my shoulder. It felt as if my arm fell asleep, but that wasn't so, and it didn't get better. I kept on working for another 2 weeks, before I decided to see a doctor.
I knew this tingling sensation from earlier on, but before I really recognised something was wrong, that tingling, funny feeling on my skin would go away. And I always had it on body parts that weren't that important, like one half of my behind, or on my stomach, or on my thigh. I mean I could still walk then, it just didn't feel normal when I touched the skin of the other thigh for example.
It must have started in 2003 I suppose.
So this time it was serious, I went to plenty of doctors, and none could really help me. We tried several treatments, and at the beginning it seemed to help, but then it worsened. At the end my arm was just hanging on my body. I couldn't write, couldn't comb my hair, couldn't use flatware (no spoon, no knife, couldn't hold it), and finally I ended up not being able to wipe my own butt.
To shorten this a bit: I was told I had a tumour in my upper spine, which would be dangerous to operate. If they'ld do that I could have ended up in a wheelchair if something would have went wrong, plus I would have been hooked up to a lung machine, my lungs wouldn't have been able to work on its own.
With this scenario in mind, after having settled all my belongings and paperwork (child custody, legacy, patients decree) I had to stay at the hospital.
Being 39 years of age that isn't to much fun, I tell ya! That are plans for being 60 or 70, but not being that young!
Soon a neurologist found out that it's "just" MS. They put me on Cortison right away, the inflammations softened a bit, all of a sudden I could move my arm again! What a delight! After 3 weeks at the hospital I was sent into a rehab program, which worked out very well.
The complete feeling never returned in my right hand up till now, but oh well.
Thanks to all that my boss fired me with some excuses, I fought a long while against him, lately I could have went to court to fight him further, but I'm so tired of all that. I didn't even get a good reference from him. As if I got ill on purpose! Anyway, he had to pay me some money, at least that hurt him in his pocket, and I trust in God, he'll pay them back somehow. Even the law is on my side, so not everything is as bad as it looks like.
All that stress made me have another "push", how they call it. My left leg "fell asleep". But this time I went to the doctor right away, got my Cortison, and it got better. That was Christmas 2005.
I found me a new doctor in January, a neurologist, and she put me on daily prophilactic injections. Which I take since then, plus some pills to balance what I mess up with eating wrong things, or not enough things like vitamines.
Now I have to explain something about MS again: it basically is an auto immune desease. That means, that as soon as I should catch any bacteria or virus, my body doesn't fight them, it starts fighting the myeline (the covering of the nervs) of my own body - IT STARTS FIGHTING ME. And what the daily prophylactic injections do, is simply that they program the brain for 24 hours to fight against the intruder and not me.
I had to cope with all of this, and because it's so hard to get a psychiatrist in Germany for things like that, I let it out somehow else: I wrote a book. Oh well, I'm just one of 30 co-authors of that MS book, and one of 3 lectors, okay, but I wrote a book. We promoted it last summer. I don't get a dime out of it though =(
Sure, I have something they call the "Uthoff phenomenon", which means, as soon as I heat up to much, or have too much stress my symptoms worsen or return. But this I can handle, and I can live with the side effects of the injections, too.
Every day is different for me. Getting up I have to check how I feel first, before I can plan the day. In the meantime I had a second rehab, they've tried to send me back to work. But my energy level shrunk down to less than 3 hours a day, so it was decided to send me into retirement. Luckily I was insured against things like that, which doesn't make me a rich woman now, but I have a better income now, than back when I used to work fulltime!
My next blurb will be about the various symptoms.
I feel good, one can't tell I'm sick at all, I minimized stress, ok it's not that tidy in the house anymore, because there's a lot of things which just exhaust me too much... But... I have two busy helpers here =)
I love my life, I found my way back into faith (I just loove Joyce Meyer, wished I could see her live in July in L.A.), I made peace with my German family, I found out who my real friends are, and dissociated from the other ones ;-) Found new friends through my illness.
What more can you want in life?

2007 August - Top 10 things not to say

Top 10 Things Not To Say
To Someone With M.S.
10.) Must be nice to sleep all day
9.) You're lucky you don't have to work
8.) I can relate
7.) Just take something
6.) Just try harder
5.) Just be positive
4.) You just want attention
3.) It's all in your head
2.) It could be worse
1.) But you LOOK so good

2007 September - How we feel

I think that because I don't complain every day about everything that is hurting, burning, tingling or tightening, that they think I am just wanting attention or something...

How us with MS Feel......

When We Say We Can't do Something Because We don't Feel Well,
Put yourself in Our Shoes By Using The Examples of our Symptoms Below...

- Painful Heavy Legs: Apply Tightly 20 LB ankle weights and 15 LB thigh weights then take a 1 mile walk, clean the house, go shopping and then sit down - how ya' feeling now?

- Painful Feet: Put equal or unequal amounts of small pebbles in each shoe then take a walk, if we are mad at you we would prefer needles to pebbles.

- Loss of Feeling in Hands and/or Arms: Put on extra thick gloves and a heavy coat then try and pick up a pencil, if successful stab yourself in the arm.

- Loss of Feeling in Feet and/or Legs: Ask a doc for a shot of novocaine in both of your legs and then try and stand up and walk without looking like the town drunk. Hopefully you won't fall down.

- TN (Trigeminal Neuralgia): Take an ice pick and jam it into your ear or cheek whenever the wind blows on it, or a stray hair touches it. If you want something easier to do, get someone to punch you in the jaw preferably daily.

- Uncontrollable Itching: Glue or sew small steel wool pads to the inside of your shirt, pants and undergarments wear them for an entire day.

- Tingling: Stick your finger in an electrical socket - preferably wet.

- Tight Banded Feeling: Put 12 inch wide belt around you and make is as tight as you can and leave it there for the entire day. How ya' breathing?

- Shots: Fill one of our spare needles with saline solution, saline won't hurt you, we would love something worse but don't want to end up in jail. Give yourself a shot everytime we do our shot.

- Side Effects From the Shot: Bang you head against a wall, wrap yourself in a heating pad, wrap your entire body with an ace bandage tightly then finally treat yourself to some spoiled food or drink.

- Trouble Lifting Arms: Apply 20 LB wrist weights and try and reach for something on the highest shelf in your house.

- Spasticity: Hook bungee cords to your rear belt loops and rear pant leg cuffs then for your arms hook bungee cords to your shirt collar and cuffs on shirt sleeves then go dancing.

- Poor Hearing/Buzzing in Ears: Put a bee in each ear and then put a plug in each
one...Bzzzzzzzzzzzzzzzzzz

- Balance and Walking Problems: Drink 100 proof grain alcohol and then sit and spin in an office chair for 30 minutes, now get up and see what happens.

Urgently Needing to Pee: We put a .5 liter remote controlled water bag and drip tube in your pants, we point out 2 restrooms in a crowded mall, then we tell you that you have 30 seconds before we activate the water bag (by remote control) to get to a restroom. Just for spite we may make that 20 seconds without telling you.

- Bizarre and Inexplicable Sensations: Place tiny spiders on your legs or arms and
allow them to periodically crawl around throughout the day, heck all day would be good too.

- Pins and Needles: Stab yourself repeatedly with needles all over your body or better yet....Get a very large tattoo in your most sensative area.

- Dizziness (Vertigo): Get on a gently rocking boat all day and all night and take
several walks around the deck with your eyes closed.

- Fatigue: Stay awake for two full days to induce incredible fatigue and then cook dinner, clean the house, walk the dog and see how you feel. Please do not compare MS fatigue to you being tired from only a few hours of sleep - it's not the
same at all.

- Cognitive Function (Brain Fog): Take a liberal dose of sleeping pills but stay awake. Try and function properly and think clearly. To make it even more real without killing yourself of course, take the sleeping pills with a small sip of wine.

- Bowel Problems: Take a 4 day dose of an anti-diarrhea medicine followed directly by a 3 day dose of stool softeners for a minimum of 3 weeks, at the end of 3 weeks sit down on a hard uncushioned chair and stay there
till tears appeared.

- Burning Feeling: Make a full pot of boiling water and then have someone fill a squirt gun with the boiling water and shoot it at yourself all day long. However, you can give us the pleasure of shooting you instead...optional of course.

- Intention Tremor: Hook your body to some type of vibrating machine try and move your legs and arms.....hmmm are you feeling a little shaky? You are not allowed to use anything fun for this lesson.

- Buzzing Feeling When Bending Our Heads to Our Chest (L'Hermitte's): Place an electrical wire on your back and run it all the way down to your feet, then pour water on it and plug it in.

- Vision Problems (Optic Neuritis): Smear vaseline on glasses and then wear them to read the newspaper.

- Memory Issues: Have someone make a list of items to shop for and when you come back that person adds two things to the list and then they ask why you didn't get them. When you come back from shopping again they take the list and
erase three things and ask why you bought those things.

- Foot Drop: Wear one swim fin and take about a 1/2 mile walk, nothing else needs to be said for this one, you'll get it.

- Depression: Take a trip to the animal shelter everyday and see all the lonely animals with no home. You get attached to one or more of the animals and when you come back the next day you come in while they are putting her/him asleep.

- Fear: Dream that you have lost complete feeling in your feet and when you wake up wiggle your feet, just so happens they don't move. Think about this every night wondering whether something on your body won't work the next day when you wake up.

- Swallowing: Try swallowing the hottest chili pepper you can find.

- Heat Intolerance or Feeling Hot When it's Really Not: You are on a nice vacation to Alaska. It's 35° outside and 65° inside. Light a fire for the fireplace and then get into it. Once you have reached about 110° tell me how you feel, even a person
without MS would feel bad, now add all of the above symptoms - welcome to
our world.

- Double Vision: You're lost in a desert and starving *hunger pains*... you find an ant pile and decide to eat the ants for food... after eating you realize the ant pile has been doctored with ant poison and you start seeing two cactus'...unfortunately you walk into the "REAL" cactus!

Then Finally...

After subjecting yourself to the items above, let everyone tell you that you
are just under a lot of stress, it's all in your head and that some exercise
and counseling is the answer.

2007 September - Dr. Seuss

2007 December - Antidepressants and narrow minded people

Antidepressants

My dear fellow MSers,

my appologies that I haven't been on here a lot lately. You know how it is: sometimes you just don't feel like it, or it's the MS, that we can't concentrate on anything. So this is how it was with me for the last couple of months.

When I started being on MySpace I got luckily involved in the MS groups here.
At the very beginning one of my first comments was, that I've noticed that so many of you American MSers are on antidepressants, which is totally uncommon in my country (Germany).

That's why I would like to share this with you.
This message from a friend of mine just made my day:

>>Ok well ever since you mentioned that in the US, everyone (especially MS patients) is on antidepressants, I've been thinking about that. Several of my closest friends (without MS) are on them. What you said first got me to notice how really widespread antidepressant use is in this country. Why is that? Are we a nation of depressed people? Well, we are a nation of overweight people who eat primarily processed foods. Maybe that's it.
This coincides with an insurane issue causing me to have to quit "cold turkey" the strong antidepressant I've been taking for more than 2 years, Effexor. I am hating the withdrawal symptoms, so I've been researching this drug. It turns out it was CAUSING a lot of the problems I was attributing to my MS!!
For example, I've been struggling with the stairs and climbing at the hilly campus where I go to school. Turns out this drug has elevated my blood pressure and put strain on my heart. Weight gain, lack of sexual desire, feeling suicidal if I miss a dose, these are a few others. And quitting the drug is like torture.
Turns out our government food and drug administration has known about all this for years, but the pharmaceutical companies get out a stronger message to people through television advertising. Doctors apparently don't do ANY research.
Anyway, I know you were considering antidepressants. Unless depression is severe and life threatening, the benefits of these drugs (SSRIs) do not balance out the risks. Your comment was the original seed of my inquiry into this.<<

Now I know that we, that I, CAN make a difference!

Just another example:
I learned here online about the MShug which isn't known at all in Germany. And I got plenty of suggestions from YOU experts online what I can do to ease the pain.

So I really want to make you share more of your experiences! We can all learn from them. I thank you all for the advice I've gotten from you. Thanks.

And thanks for your attention.

Sending my support to all of you:
Regina.

********************************************

Narrow minded people

I had one of those good ones today, ya know?

1. but you don't look sick at all(so I'm just acting as if, or what? When I don't feel well nobody gets to see me, because I'll rest in bed or on the couch.)

2. I know that, too. I have tongue twisters all the time
(well fine, so you got MS, too?)

3. you keep forgetting things? But me also, that's normal(but I am not normal, I AM ILL!)

4. you just gotta go back to work, and you'll be back on track again!(I know, all my doctors have to be wrong, the government agency who put me on disability, too, and the ones who got me retired, as well, huh?)

5. what does multiple sclerosis mean anyway?
(many scars in my head)
oh, then that's why you put on make up?(no, I put on make up to look better than I feel, and the scars are in my brain, not on my face!)

*sighing*
No. 5 came from a 10-year-old, so this one is excusable.
But with all the others... remember my two blogs on MS? Go, have a scroll through them, and go back far enough. There's one about the top ten things not to say to a person with MS (just if you're seriously interested in my life), and there's one blog about how us with MS feel. Those blogs are very interesting, and they (like a couple of others) show how my allday life mostly is. I believe that you of my friends who have multiple sclerosis too, know what I write about here, and you also know how frustrating days like this one today are to us!

I just felt like sharing.

Good night, I gotta rest now, my knees are killing me today, besides all the "normal" stuff, listed above, and besides all the stuff I didn't even mention (there's a big list of usual stuff in one of my other blogs...).

Tired of thinking now:

yours,
Regina.

2008 November - Taxes, death and the impact of Multiple Sclerosis

Dear, fellow readers,

Let me keep this short *sarcastic* and just inform you that I was one whole week off, off of teaching English. I'm giving myself a break, because I tend to forget that I'm ill.

I suffer  from a serious illness, called Multiple Sclerosis.  And I teach 5 classes in English each week (in an honorary capacity), that's 28 pupils, ages 3 till 10.  I also give tuition to one boy who's 11 or 12 years old. And lately I teach 3 more  (adult) pupils. Two are in their thirties and about to get married, who are in the US often and who want to brush up on their English (FL-TX and Sunshinebiggi on my friendslist btw) and her mom Hana, who's in her early sixties, has family overseas and hasn't ever learned English at school or somewhere else, a bloody beginner. So this is quite a challenge for me to cover such a wide range of English knowledge within those 32 students of mine, but it is so much fun!

Since February '08 I've become a teacher and my cognitive deficits (now if I translated that right?) have improved! Which means, my memory, concentration, logical thinking, being flexible to various tasks (pre-k kids and toddlers are just like a bag of fleas sometimes *lol*… that easy to handle and to kept busy), I can focus easier now, remember things even from my childhood and stuff. And in the end I can manage my fatigue better. Fatigue, for all of you who don't know, is an extreme tiredness all the time. Before you take a nap, while you're sleeping, after you've rested, you just can't restore this lack of sleep and you feel drained all the time! I handle this much better with taking in red ginseng and iron AND through growing in my responsibility as a teacher.

So due to All Saints' and All Souls' Day past weekend children have been off school this week, kinda like fall break or so… My decision was to take the whole week off myself, where I don't have to run around, go places, prepare things…

But… have you ever heard of the Sword of Damocles? That sorta kept hanging over my head *lol* Why? They wanted me to do my tax declaration for 2007 by the end of October. As we all might know or not know it's November already, "Hello?"!

So I called in and they postponed my deadline until the end of November. But even with that in mind I'm running outa time here, ok?

You might wonder now what a retired person has to declare her taxes for, so did I. But as we all have experienced: the money gets taken from the little ones, with the low income and it gets refunded to the rich ones. Am I right, or am I right?

Usually my sister-in-law Edeltraud prepares my tax papers, BUT… she asked me last year already, if I wouldn't rather use the ELSTER form instead of her, because she never got paid by me for her services. I mean, she's family anyway? ELSTER (= magpie!), for my American friends here, means just electronic tax declaration, so you would abbreviate it probably ETD or something…

Well that's a nice thing to do, ocne more: BUT even with being a native German speaker no human being understands the meaning of all the things they want to know from you.

So I gave it my best shot and it took me 4 (!!!) days to get through this whole experience of having to do taxes on my own and all just with the help of an online program called the tax fox. It questions you things and just charges you 15 bucks in the end.

Anyway, I wondered, well basically Peter wondered, how a person who doesn't pay taxes gets refunded through a tax declaration. It's like you can't take anything away from a naked person now, can you?

Picture little Regina putting ALL her income and expenses into a nice little (big) Excel file (which took her two days, because she forgot half of what she spent already…).

On Wednesday I tried to figure out which amount to fit in which line of their forms.

Thursday? I just took the day off!

And then finally yesterday I had figured it all out - so I think, with Peter's help, how they ment which expression for which expense or income...

On day one I had like to pay back 4000 bucks (of what I ask you, I'm always broke somehow)? Breathe! On day two I had that reduced down to like 3000 bucks. Man, was I not relieved L Day three I managed to lower that from 1300 down to 1200 something. But… even if I'd pay that back in instalments it would take me a whole year to do so. Good that I took one whole day off that subject, because yesterday I actually managed to find out where I should place things correctly *lol* and guess what? I won't get a tax refund, but… I don't owe either!  RESULT: € 0,-

And believe me there was a lot of money going over the counter into my pocket in '07! Health insurance paid, retirement insurance (private and government) both paid backdated till '06, I wound up a fond contract, two payments came in advance for '08 *yeah* J I'M A RICH WOMAN! Yeah right, I just wonder where all that money went to? ;-/ 

On Thursday we've received this disturbing message:

Nov 6, 2008 6:11 PM

Sad Day

Today my beloved sister Vicky stopped suffering from her illness. Vicky has gone on to heaven to be with our Lord. She is now resting peacefully. Virginia

Vicky was my dear mother-in-law and grandmother of my daughter. She was one of the few who still held contact with us and who made my little girl feel like family still.

Sabrina cried herself to sleep that very night.

The worst part is that we can't just jump on an airplane and fly to California to show her our last respect (do you guys put it that way in English?).

What a sad day!

She was just fortunate enough to become 66 years of age. She was a warm hearted woman, who did anything for her family, always. She was very friendly to me. I'm glad I got to know her. *sigh*

Sabrina on the other hand has no real memory of her granny...

The males please skip this chapter now, it's girl's stuff…

My fellow MSers know how giving yourself one injection against this disease affects your body and I've been doing this for almost 3 consecutive years now. The impact is incredible, not just does it re-figurate your immune system BUT you have various side effects also. I don't feel like writing how crappy one feels at times, just one thing I'd like to mention.

Peter and I have been trying to conceive for over 6 years, but it just won't work. My gynaecologist says MS is no problem with pregnancy. So we've tried and tried… and are still trying.

Peter and I met in 1982 and since then I gained a whole lot of weight (no wonder with having a sweet tooth…), which is counterproductive to pregnancy. So they say. Let's not talk about his health problems here, but mine seem obvious.

To top this, one of my side effects due to injections is that my period is terribly out of any regularity. I either don't have AF for weeks, just to flow then for three weeks or so in a row! And let me assure you that this doesn't help trying to conceive… When I don't have it for that long I always get my hopes up and sooner or later end up buying a pregnancy test to check. Not that I HAVE to know, but in order of being able to quit those injections soon enough to not harm a possible fetus. *sigh*

Just so you get an idea of which period of time we're talking here: today it's exactly 53 (!) days since my last menstruation. I'm flowing now...

Guys can continue reading now *lol* 

To make it an easy week ahead for me, I've decided to make it a 'book week'. I stored plenty of English childrens' books at the day care facility I'm working at. So each child will have to pick a book and we'll read it out loud together and stuff. I also got new CD's with songs like 'ring around the rosy'. That should occupy us without having to prepare too much on my side. Tuition and adult education is done quickly anyway.

So I'm basically REALLY off for the weekend. A relaxing, Joyce Meyer watching, recordings watching, lazy ass (pardon) weekend!

Hope you've enjoyed my little journey of mind?

It was just a normal week in my life *rofl*

And PLEASE correct my English!

I am a teacher now and I should know what I'm doing, okay?

Appreciate that, thx.

Love you guys,

Regina