ENMG-results

Saturday morning, peaceful and quiet. No wait, that has to be somewhere else rather than here... But I don't mind att all, they keep up with positive noise and are not fighting and bickering about everything.

On Friday I had my ENMG-examination of my hands. As my physician said on the phone, sounds like something is crushing the nerves and so it is. On the right the condition is worse and has to operated on as soon as possible. Fortunately or unfortunately on the left only a minor change was to be noticed, and therefor it is necessary to use a support at nights to keep it straight and to monitor the situation for the time being.

The operation in itself is no big thing, quite rutine. But recovering is another issue. For three-four days you may not use your hand at all. And that means AT ALL. No writing, no lifting, no bending. If I could walk, this wouldn't be a problem, but since I need my crutches or my walking aid, it becomes a problem. We talked about it for quite some time, but didn't come to a conclusion how to proceed. On the other side of the scale are my feet - there are no guarantees they ever will get better and that I could manage without assisitive devices. And the other side of the scale is tipped by my hands - they should be operated. Maybe next week I'll know.

It was sooooo close that a few friends would have come for coffee. I had set the table already, the coffee and tea was brewing and a cake was waiting for eaters. When warming up this house, I'd lit the wooden stove as well, so there was warm soup waiting for everyone. A car turned on our road and then pooof... it got stuck!!! My spouse drove behind them and they got the car loose, but there was too much snow in the way and the plowman was busy plowing the other roads. So they had to turn around and drive away :( But, it's the thought that counts.

As you may see, the counter is set on the right side. I got a wonderful email from a Friend, who gave me the link - thank you ever so much.

So, even if it may seem on the darkest moment of the day you should have no light in your life - just pause for a while. The light is bound to come back brighter than ever :)

Thursday, full of hope?

Hope that no-one got offended about yesterdays blurt of feelings. It's quite amazing what a few hours of listening to goog music (=Bon Jovi) can do. Still, I do miss having friends over for coffee etc. but it didn't feel as bad as it did whilst I was writing that entry.

Had a shower today, I was able to stand in the shower almost until it was time to rinse the shampoo. So some success, previously I couldn't get my hair even moist before the pain was so severe I had to sit down on a chair I have to have with me in the shower. Found myself yesterday walking as near to normal as possible without crutches, and then during the night it got back to me - the pain in my heel and toe was something awful and once again I had to take extra pain medicine.

When you add to this equasion a terrible bed the result is an ill slept night. And no, we can't buy a new bed. We bought a new mattress pad last fall, lets say that 50%of the ones using it are satisfied, and that 50% does not include me :) I seem to be similar as my son, he doesn't want to sleep in the bed at all, according to him the floor is a much better place to sleep.

My assignment for today is to find a counter for this page, let's see if I succeed.

Feeling sad today

Today on Wednesday, feeling much much better. My fever rose up to 38,5 and the only thing I could do was to shiver under all the blankets and hope that it would pass.

While browsing through Facebook this morning I found a group called The Finnish Pain association (tranlated freely) in Finnish Suomen Kipu ry. After a few clicks, I found their own website, and there read that people who suffer from chronic pain, often have changes in their social network and that even the most active person can become reclusive. Really? That I can underline 100%! Previously I took part in many organisations on my freetime. I was the chairman of a Parent association and of the local Red Cross; a member of the board of our local "village organisation", the Entrepreneur Association as well as LounaPlussa. Nowadays I still am the chairman of the Parent Association. Nowadays I still am with the parent association and of the entrepreneur organisation, but I only work about 1/10 of my previous activity.

I loved to have family and friends come over for dinner or a cup of coffee, as a matter of fact I still do, but only a few people have the time. It has been a long time since we have been invited to visit anyone, fortunately we have one very dear friend with whom we interact quite much. Besides her and my family - there is no-one. This makes me so sad, but what am I to do? I'm not able to drive the car anymore, so I can't get up and whizz myself away. We live in the middle of nowhere, so it is hard and timetaking for someone to come visit us, usually you have to reserve a whole day to come here, and who in this busy world can waste an entire day on us, when even a phonecall every once in a while (once every five years?) is too much to ask?

I can't even remember the last time the phone would ring and on the other end would be a friend. And it can't rely that I wouldn't have had contact with my friends, I used to phone up them often, but if I'm not the one to take the initiative, my friends seem to be too caught up to do so. Onesided communication doesn't last long. This is what I have found out the hard way.

It's no use to use up your energy and arrange a party, invite lots of people to come. Plan for weeks ahead, create a menu that takes into consideration everyones taste, dislikes and allergies. Buy and prepare the meals and make beds for the guests to sleep in. And then, a day before or even on the same day - textmessages start to beep - Sorry, can't come. Sorry, my hamster is feeling ill. Sorry, neighbour asked to water his plants. And the result is that maybe one or two arrive (and always the same one or two people, to whom I am very thankful), ofcourse we'll have a wonderful time! To the outside world I'll show a happy face, but inside my heart is breaking. What have I done to deserve this as well. Something bad, has to be.

Things change, people change, situations change. I know that. But I don't have to like it. I want to enjoy life, spend time with my friends, laugh until every last bit of trouble has been vanished. Instead, I have to sit at home, and if I'm lucky I have the chance to read a few lines in Facebook what my friends have done. If you could see my front page - you'd never believe I have 120 friends of whom everyones' news are to be published...

What should I do? Force my friends? No use. Maybe the only thing left to do is to just silently approve of my situation. I hope that (if someone is reading this) you did not get the idea that I don't appreciate my family or that I wouldn't enjoy their company, that's totally bogus! I love my family so much, words can't even begin to describe how much. Without my family - I would have nothing.

Monday - sickness

Oh what a feeling :(

I caught a stomach flue and I'm throwing up a bit too much. Last Thursday my youngest had to stay home from pre-school due to this same illness, and my oldest daughter threw up while staying overnight with my sister. And now I have this awful, annoying but luckily passing condition.

On Saturday we were in Helsinki to celebrate my Mother's Birthday. We had a very delicious meal at MammaRosa, we all enjoyed ourselves. From there we drove to my parents house and had a cup of tea, and later I worked a bit with my father with some bookkeeping. The kids had the opportunity to stay overnight with my sister, they went to see a movie and had enjoyed theirselves. On Sunday they were supposed to go slalom-skiing, but it was way to cold so instead they messed about in Hämeenlinna at HopLop. By the time they arrived at home, they were sooooo tired that they just lay about for the rest of the evening.

So this morning has been nauseous, normally I would not use powerful words such as love or hate, but in this case I truly hate throwing up. I feel so drained up, and I don't have the energy to do anything else but to stay in bed, but not feel sorry for myself :)

We lost our nerves with Canal Digital today, they tried to trick us to pay extra, so we changed our satellite-dish deliverer to Viasat, and got double the channels and it cost the same. When will we have time to watch these channels, that's another issue.

My hands are feeling much better now that it's colder, but my walking is still shorter day by day. The more I walk, the shorter the distance is. Maybe I should start to think about a wheelchair, the walking aid is not enough anymore. I have to stop every few minutes, and the journey just gets prolonged. But if I sit in a wheelchair, maybe then I would enjoy a trip to the store for example. My lips are all filled with bitemarks as I bite my lip with every step, what could I bite instead?

Tomorrow is the birthday of Ellen DeGeneres - Happy Birthday :)
We have been watching the show ever since it started to air in Finland - Valentines Day last year. She is a caring big-hearted woman, from whom I am inspired to stay positive and always find the good side of things. So Ellen, if you read this - Thank You! (As if it would be possible for her to find this page amongst millions and millions of pages, but you never know --> a good example of positive thinking...)

Now I have to tuck myself to bed again and hope that when I wake up I'd feel alot better.

Freezing Friday

It really is freezing outside, -13,4 degrees Celcius. This winter we have snow much more than we have had the previous years counted together. Only three times this year have I been outside, and this includes the porch. So in a way it's just the same for me how cold or how warm the weather is. Inside we have it warm and cozy, we use the baking oven to heat the house and sometimes I even cook food with it.

Last night was awful - the pain in my hands was something I hadn't felt for a few weeks, I could sleep for 3hours and then I'd have to get up and try to get the numbness from my hands to reside. My stomach is aching alot, I can't stand up straight. Please don't let this be the appendix! It will pass, I hope that's the least of my worries.

Yesterday my "pain-doctor" phoned me as scheduled, we are going to reduce one of my painmedicines, she was very satisfied with my well-being :)

Today is a really painful day, I don't have the energy to do anything. Tomorrow we are going to be in Helsinki to celebrate my mothers birthday, so maybe on Sunday I'll write again.

Have a nice weekend, enjoy yourselves :)

Disability Pension

So, I am officially a pensioner at the age of 35...

Yesterday the mail delivered the judgement and it was positive. For the time being it is paid as rehabilitation aid, until the end of July. But supposedly the pension will continue after that.

Seems so awful, in a way I had hoped that the decision would be negative so that there would be a slight chance for me to work full-time again, but maybe it's better this way. I may work part time alongside this pension and earn up to 600€ per month, wuhuuu :) Maybe the bloodvessels repair themselves and I may walk again without having to sit down every 100meters? Maybe this all is just a bad dream and I'll wake up sweaty in my own bed beside my wife, she'll hug me and ask: "Is everything alright, my love?", and I'd say; "Yes dear, everything is fine". And then we would go on a long long walk with the dogs in the forest, just the two of us holding hands as we walk.

It has been almost a year since I have worn TWO shoes, all of my shoes have only one pair in the hall, the left pair is packed away upstairs. About eight months ago I could go on a walk with our dogs. But maybe the worst is that it has been way over a year since I had a day without pain. Nowadays I don't think where it hurts, only how much. I hate to wake up in the mornings, they are the worst. I can't even get dressed without excruciating pain. Luckily, the pain subsides in a few hours. Mornings have always been hard for me, and then you add the pain and the result is that I am pretty much left alone until I myself start talking, then everyone knows the pain has eased up.

I am very thankful for my family. The word "family" is a collective word for me - not only my wife and children are included, but also my parents and sister as well as her girlfriend. Each and everyone of them does their best to support me in my battle, without them I probably would be moping around all day wellowing in self pity.

And to end this days writing with a positive touch, I just read from facebook that a dear friend of mine is getting married next summer - from the bottom of my heart, I hope all the best for them <3

Mom's Birthday :)

HAPPY BIRTHDAY MOM!

Outside is freezing, about -15C. Yesterday the kids were iceskating for about two hours with a couple of their friends, it was wonderful to watch them enjoy themselves. My youngest has just learned how to iceskate, and she was the last child on ice. When she was alone on ice, she skated around singing: "The whole ice is mine, just mine. Mine alone I may skate around.." and then she fell, and laughed along with others :) What a possible way of thinking, maybe I have done somethings the right way in raising my children.

Last night I slept for 12hours, the new medicine is finally starting to work. Well obviously, because now for the first time in about a year I have the energy to do something else than sit and think how to change my position so it would hurt the least. Still I wonder why, maybe because now I may be at home when my children come home from school?

Oh, school, don't get me started on that! The community we are living in, are going to save some money and one of the teachers at our school has to go! So, there are going to be only two teachers left and 41 students. And since the school in question are the lower classes, it would be very important to have the basics well taught. But no, supposedly the school will be divided in two, so that the first and second grade are together (15 students) and then from the third to the sixth grade (26 students) will be together.
Even today the children have to do the exercises themselves and check the answers on their own. No-one has the time to double check. There should be no problem with this system, but there is - the children are in such a hurry for recess, they just hastily check the results, or in worst case copy the correct answers. And if the answer differs from what they have got, they just erase and write the right answer instead, and don't even wonder how it would be done correctly!!!
Not everyone has parents like me, everyday we go over the homework together. Some days it may take up to a couple of hours, because the teacher at school never had the time to make sure everyone understood the subject.
But I am happy to do this, it jogs my memory to re-study about the Greek Gods or about Fysics (which I never understood myself in school).

Seems to be my last year as president of the parents' association. Five long years I have been the president, but who is going to come in my place? Not many volunteers are available, when we have the compulsory meeting every fall, fewer and fewer parents even bother to come. Not to mention that they would be able to give a few hours each semester to raise money for the kids at school. My objective this last year (if it is my last year) is to give away almost all the money we have raised, next week the students will receive new small sleds. And in a few weeks we'll have a Wintercarneval, there we are going to give to everyone attending free sleighride with a horse. How nostalgic!

But now I have to do the one thing I dislike very very very much - pay the bills. If only I could work in order to make money and not only spend. Well, maybe next month?

It would be great to receive some comments, so please feel free to comment.

Tuesday feelings

Next week on Friday, they will make an ENMG-exam, to find out what the matter is with my hands. They ache alot, and I have trouble sleeping. Mornings are the worst, I can't open my right hand at all. Seems to be something crushing some nerves but what are the physicians going to do to make it better - only time will tell.

Sometimes I feel this is so overwhelming, I can't help but wonder Why me? Why am I the one in 100.000 who got this evil disease. Why can't I walk without aid anymore? Well atleast this disease got me to stop smoking at once. My last cigarette was lit on September 22, 2009 after I had my ABI-index measured and it was very near critical ischemia. A week after this, I was admitted to the hospital for three weeks.

During my stay at the hospital, they examined me and tried to make the ulcers in my left foot better. I had to use the wheelchair, and only few steps were allowed to be taken without assistant. The last week I received iv-medicine, Ilomedin, which should enlarge the bloodvessels. The only thing I felt the medicine did was that it caused me a terrible head ache. Since then, this treatment was redone in the beginning of December.

The sun is setting here in Finland, promised my children they could go iceskating, so I'd better start packing everything together.

Tomorrow is a new day :)

A description of Buerger's Disease

The following text has been copied from WIKIPEDIA http://en.wikipedia.org/wiki/Buerger's_disease


Buerger's disease

Buerger's disease (also known as thromboangiitis obliterans) is a recurring inflammation and thrombosis (clotting) of small and medium arteries and veins of the hands and feet. It is strongly associated with use of tobacco products,[1] primarily from smoking, but also from smokeless tobacco.

Features
There is a recurrent acute and chronic inflammation and thrombosis of arteries and veins of the hands and feet. The main symptom is pain in the affected areas. Ulcerations and gangrene in the extremities are common complications, often resulting in the need for amputation of the involved extremity.
This disease was first reported by Buerger in 1908, who described a disease in which the characteristic pathologic findings — acute inflammation and thrombosis (clotting) of arteries and veins — affected the hands and feet. Another name for Buerger’s Disease is thromboangiitis obliterans.

Diagnosis
A concrete diagnosis of thromboangiitis obliterans is often difficult as it relies heavily on exclusion of other conditions. The commonly followed diagnostic criteria are below although the criteria tend to differ slightly from author to author. Olin (2000) proposes the following criteria:
- Typically between 20–40 years old and male, although recently females have been diagnosed.
- Current (or recent) history of tobacco use
- Presence of distal extremity ischemia (indicated by claudication, pain at rest, ischemic ulcers or gangrene) documented by noninvasive vascular testing such as ultrasound
- Exclusion of other autoimmune diseases, hypercoagulable states, and diabetes mellitus by laboratory tests.
- Exclusion of a proximal source of emboli by echocardiography and arteriography
- Consistent arteriographic findings in the clinically involved and noninvolved limbs.

Buerger’s disease can be mimicked by a wide variety of other diseases that cause diminished blood flow to the extremities. These other disorders must be ruled out with an aggressive evaluation, because their treatments differ substantially from that of Buerger’s Disease.

For Buerger’s there is no treatment known to be effective.

Diseases with which Buerger’s Disease may be confused include atherosclerosis (build–up of cholesterol plaques in the arteries), endocarditis (an infection of the lining of the heart), other types of vasculitis, severe Raynaud’s phenomenon associated with connective tissue disorders (e.g., lupus or scleroderma), clotting disorders of the blood, and others.
Angiograms of the upper and lower extremities can be helpful in making the diagnosis of Buerger’s disease. In the proper clinical setting, certain angiographic findings are diagnostic of Buerger’s. These findings include a “cock” appearance of arteries that result from vascular damage, particularly the arteries in the region of the wrists and ankles. Angiograms may also show occlusions (blockages) or stenoses (narrowings) in multiple areas of both the arms and legs. The changes are particularly apparent in the blood vessels in the lower right hand portion of the picture (the ulnar artery distribution).
In order to rule out other forms of vasculitis (by excluding involvement of vascular regions atypical for Buerger’s), it is sometimes necessary to perform angiograms of other body regions (e.g., a mesenteric angiogram).
Skin biopsies of affected extremities are rarely performed because of the frequent concern that a biopsy site near an area poorly perfused with blood will not heal well.

Pathophysiology
There are characteristic pathologic findings of acute inflammation and thrombosis (clotting) of arteries and veins of the hands and feet (the lower limbs being more common). The mechanisms underlying Buerger's disease are still largely unknown. It is suspected that immunological reactions play a role.
The association of Buerger’s Disease with tobacco use, particularly cigarette smoking, cannot be overemphasized. Most patients with Buerger’s are regular smokers but some cases occur in patients who only smoke “moderately”; others have been reported in users of smokeless tobacco. It has been postulated that Buerger’s Disease is an “autoimmune” reaction (one in which the body’s immune system attacks the body’s own tissues) triggered by some constituent of tobacco.

Treatment
Smoking cessation has shown to slow the progression of the disease and decrease the severity of amputation in most patients, but does not halt the progression. Vascular surgery can sometimes be helpful in treating limbs with poor perfusion secondary to this disease. Use of vascular growth factor and stem cell injections have been showing promise in clinical studies.
Streptokinase has been proposed as adjuvant therapy in some cases.

Prognosis
Buerger's is not immediately fatal, but life-shortening. Amputation is common and major amputations (of limbs rather than fingers/ toes) are almost twice as common in patients who continue to smoke. Death rate has not been consistently shown as higher in patients who do not cease smoking but for this and other health concerns quitting is highly recommended. Female patients tend to show much higher longevity rates than men.
Despite the clear presence of inflammation in this disorder, anti-inflammatory agents such as corticosteroids have not been shown to be beneficial in healing, but do have significant anti-inflammatory and pain relief qualities in low dosage intermittent form. Similarly, strategies of anticoagulation (thinning of the blood with aspirin or other agents to prevent clots) have not proven effective. The only way to slow the progression of the disease is to abstain from all tobacco products.

Prevention
The cause of the disease is unknown but thought to be autoimmune in nature and heavily linked to tobacco use. There have also been links to persons with digestive disorders.

Epidemiology
Buerger's is more common among men than women. It is more common in Israel, Japan and India along the "old silk route" than in the United States and Europe. The disease is most common among South Asians. The patients are almost always from low class of their society.

History
Buerger's disease was first reported by Felix von Winiwarter in 1879 in Austria.
It wasn't until 1908, however, that the disease was given its first accurate pathological description, by Leo Buerger at Mount Sinai Hospital in New York City. Buerger called it "presenile spontaneous gangrene" after studying amputations in 11 patients.

First text

Hi all!

My name is Isa, and this is my blog.

A couple of months ago I was diagnosed with Buerger's Disease and I want to share my journey with You.

Blogging is very new to me, so please be patient - I will learn quickly :)

Hope you'll enjoy reading these "stories"!