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Monday, January 25, 2010

Finally sleeping!

After months of sleeplessness I have today been sleeping for 7 hours! It feels right now a bit heavy in the head and drowsy but otherwise just wonderful! I am so grateful for all your prayers and thoughts and everything positive that I have received! I will go to sleep again. Ohhh - this is such a great thing to happen, I was already about to lose my sanity. I am so so grateful - cannot express in words how I feel! Thank you everyone for prayers and thoughts and all positive!

Tuesday, January 19, 2010

The motto of the day is here

Found the motto for the day. God bless Martin Luther King Jr. who is the age of my mother and would have been 81 yesterday if he had lived. My Twitter account has lots of quotes from him from yesterday but this I found (in Twitter) first now in the evening:

"We must accept finite disappointment, but never lose infinite hope." MLK
I have always admired MLK jr - he did an amazing job and left such an ethic inheritance to all of us to carry on. It looks as though my contemplating through the day would have been preparing to read these words and to understand that it is there - why I am doing all this. Why I am going through this. Why I don't see light, why I face disappointments. I have been given the precious gift of life. I will be given the strength and energy to go through it, find light, get positive, make people around me feel good. Maybe it is my time to receive now. To rest in love that carries, and to receive what I am given, and feel grateful.

God - help me fulfil the task I have been given, with your help because self I cannot do it. Bless everyone around me and if you can, use me for doing so; I am here.

Amen.

Sorry

Why is it that I feel I should apologize for annoying people with illness issues I write on my blog? I don't apologize anyway because this is an illness blog as I have stated. Reading is voluntary: those who are interested, read. And nowadays, honestly, with all these problems and feelings around them and everything... I just cannot focus on much else. Today I am trying to overcome my deep disappointment for not being able to cut down on steroids as planned. But every medicine I take now is essential for my life and in the end I am now struggling to keep alive so I just have to take what is essential. If I cannot live without something, I take it. It is as simple as that.

More than anything I value my family who wholeheartedly support me all the way. More than anything I value my true friends who stay with me because now very many take distance. They may as well go. I have today cleaned some of my sites from contacts that I did not anymore consider worth while. I have said goodbye to a dear (former) friend who has more interesting things going on in his life and things so well he does not need me anymore. That is life, and i try not to feel sad but relieved.

I have blocked people from IM / chat to be available for those who are true friends and don't play games and have fun with other people.

I trust that God is not leaving me alone. I also appreciate my colleagues who today have been in touch after a long silence. I was already thinking I was not even missed but yes I am - they needed to ask things from me, talk with me, hear my opinion... feels good.

I wish to get well enough to be there for my family, and not to be the kind of zombie I have been today. Today this was all I could do. Perhaps tomorrow will be a better day - after all, I am back to the original dose of steroids so it could be. But to what price...

When do I need professional help to overcome all these emotions and frustrations? Will writing about them be enough? What could I do? Write an e-book? Why not, to myself... Blogs, social media etc are after all so fragmentary and sometimes I feel I'd need to process text which has length and cronology and which would be stilisized before publishing.

My Pidgin contacts list looks odd now as I have reorganized it to serve my needs better. I will get used to it.

New appointment

Right - I got a new appoinntment for the asthma specialist. Got to go to see him again in two weeks because diminishing cortizon is not succeeding. In case it should start succeeding in the meanwhile, I can always cancel the appointmant.

Struggling

Here I am again. It is the third week on sick leave now, and the sick leave is supposed to go on two weeks still, till the end of January.

I have been to my ordinary doctor twice, and to the asthma specialist once (it was last week Wednesday). The ordinary one had some lab tests made and I called her to hear what she thought of them. At least thyroid is functioning normally, it is not the cause of sleepiness and drowsiness and exhaustedness. Also the Central hospital is tracing the cause of my tiredness and I have had sleep registration done, and after that they wanted to have the thyroid tests made too, so I have been in those testsa twice. Still I have no results from the registration, and I have not been asked to see the doctor there either.

X-rays show no new damages done to lungs, they are ok in spite of the swine flu which I had in the end of last November, which was this time the beginning of this evil which I am now going through. It is just the asthma which is now hyperreactive. The specialist told to me about healthy young men who had got permanent damage done to their lungs due to the swine flu. I can consider myself blessed since I got nothing.

I got instructions from the specialist last week on how to gradually drop the size of the cortizone dose, and I thought of course that would be it. Cortizone is not a very good medicine to take for a long time. I have now taken it for about 8 weeks, without being able to stop - when I have stopped, it has made the situation worse, and I have been forced to start again. Now I was dropping it to half, from 40 mg to 20 mg, yesterday.

As a result I stayed awake most of the night, making everyone in Twitter insane I am sure by tweeting continuously - for what else is there to do when everybody sleeps... except those who are online? I had several fierce attacks of asthma which made sleeping impossible. I took my medication in the morning, again just 20 mg, not thinking about it because I have a dosette for medicine and I take what I have put in there. The attacks went on all mnorning.

When I was having lunch and talking to my dear husband, I suddenly realized the connection between the decreased cortizon dose and the increased attacks. I was thinking about it and realized that I have no choice - I have to add on that 20 mg again. And I did.

I feel so frustrated. There are contraindications: I have glaucoma, diabetes, overweight - not good to combine with cortizone, any of them.

I have been to opthalmologist too, last week. There was no damage in the eyes to be seen, I got prescription for a new pair of glasses and found a nice pair for both ordinary progressive glasses and screen glasses (which my employer will pay for). Neither was the eye pressure too high. It was within the normal range, although in the upper end of it, and I was told to come again in a year.

Actually I was so happy that "doctor day" when I had both opthalmologist and asthma specialist and saw a lot of people and went shopping and talked to optician and tried on new glasses and joked and.... I have been so isolated here at home, and I have isolated myself even more, not being available online, just using Twitter, not having enough energy to write emails or letters or anything... okey... I was so happy after all these PEOPLE things that it felt really good. Even husband noticed the change.

Actually, he will be taking me out to lunch on Thursday when he has not the entire day scheduled at work. Feels good.

SO, X-rays were good. Eyes were ok, it was just good news from the opthalmologist. And I like the new glasses though they are not ready yet.

Then there was blood in the urine. You start to think of all kinds of things when you see that. ANd when I called my doctor she wanted to see me personally. I have truly never been as scared as I was the day before I went to see her, and that special day.

It was no infection, there was no bacteria. It was neither anyhing else that could be seen or found in her surgery. Everything was perfectly clean and healthy, which was such a relief. She also said I was not menopausal (I think I know that - ).. I asked if it could be that kidneys are failing, and she said absolutely no. But she also ordered new lab tests to make sure it was just something occasional. So what I feared so much seemed to be nothing at all - at least nothing yet. Except new tests.

Now I am just feeling frustrated. It seems a never-ending battle with that cortizone. Why cannot I do without it, or even with a smaller amount of ii? I will have to try again, after a few days.... maybe next week? I also need a new appointment with my specialist in that case but I was just online and had a look but the only time there was was today. So maybe he will give new times today when he comes to the surgery. I must go and have a look after 3 p.m. forf he usually starts then.

I feel so trapped with this cortizone.

SO really trapped. Without it, I can't breathe. But it is not good to have forever either.... though I know people are on cortizone for long times, some forever. But I haven't been one of them.... I don't want to be.

Friday, January 15, 2010

Agenda for today...

1) measure the the blood sugar of my daughter and give the first insulin shots of the day

2) make breakfast

3) comb the girls for school

4) drive husband home from garage (he had his car on service today), he leaves for work with a 3rd car

5) make the declaration of my late brother's sold house - mine, and my mother's (took all morning!)

6) pack clothes to be sent to the children's 2nd cousin (too small clothes for our girls)

7) brush the car from snow, drive to the post office to post the declarations and the parcel with clothes

8) walk (!!!) to pharmacy to buy some medicine and a support bindage for my daughter's anckle

9) make lunch

10) have lunch with husband

11) call the doctor for lab results

12) make another appointment with the doctor for Monday because she wants to examine something closer.. and this has nothing to do with asthma... new things are coming up all the time... Swallow tears and try to live on with disappointment for a while, it feels difficult to think about yet another thing that's wrong...

13) a short while online, organizing the payments for the next holiday trip to the Mediterranean, and I don't even know if I will be fit to go...

14) drive girls from school(s) to the parish hall where they have "Sunday" school on Fridays

15) go shopping, shop three bags with vegetables

15) discuss for a while with son

16) short while online, reading Twitter messages

17) drive girls home from the parish hall

18) watch tv with the girls, have a good talk about real beauty, i am proud of my girls and their opinions!

19) shortly online, chat with a good friend, avoid telling him much about my health, pass it with jokes

20) drive husband to the garage

21) husband cooks dinner and I get a huge portion of vegetables and I am happy

22) tell son I cannot get a video out of a cd and that he should try since he knows more about it than I do - but perhaps we never see it, I am afraid

23) send an offline message to explain the odd way our laptops work here

24) demand that son behaves and it raises a calamity but in the end the solution is satisfactory

25) comb the girls who have been to sauna

26) watch son lift his bicycle to the basement and the sauna shower room to melt from the snow and ice. He cycles 10 km each day, to work to the local tv station, back to home for lunch, and back to work again - in the snow and cold, and does not complain with a word. I am proud of him. On the other hand cycling makes thirsty and he has almost emptied "my" 1,5 liter bottle with mineral water - another calamity till I asked if husband could buy some more of it next time because he must be thirsty and just plain tap water is not always quite satisfactory if you sweat salts and other minerals too.

27) Now I am here - noticing that it is late, I am dead-tired - exhausted - been a short while on Twitter and met friends, cool - and still I have not done what I have promised already for several days: I have not written to my health (rather: illness) blog in Blogger and told what everything is going on now, and what is not.

Whooooofffff!!!! Call this sick leave?????????????????? Anyone????????????????????

Wednesday, January 13, 2010

MY AGENDA FOR TODAY

MY AGENDA FOR TODAY:


*OPTHALMOLOGIST Nörtti
*OPTICIAN, TO PLACE AN ORDER FOR TWO TYPES OF EYE GLASSES (NORMAL PROGRESSIVE Aurinkolasit PLUS SCREEN GLASSES NörttiTietokone)
*ASTHMA SPECIALIST Sairas
*PHONE CALL TO A THIRD DOCTOR ABOUT LAB RESULTS THAT SEEMED WORRYING Matkapuhelin

Yllättynyt HEY FOLKS I AM ILL, I CANNOT POSSIBLY MANAGE ALL THIS, PLUS BEING MY OWN DRIVER WHEN FALLING ASLEEP BEHIND THE STEERING WHEEL Auto Juhlii ! GIVE ME AN ASSISTANT PLEASE Vihainen ! I NEED AN ASSISTANT AND A SECRETARY AND A CAR DRIVER AND AND AND.... THIS IS GETTING A FULL TIME JOB, BEING ILL... Näyttää kieltä

Doctors, doctors, doctors...

I am so sleep-deprived that I sometimes feel all my life is focused on possibilities to sleep, or take a nap - it's all I can think about..

Trying to get the papers ready for both opthalmologist and asthma specialist. Wish me luck - I am tired and nervous and slow and and and ---


In addition, I should call a third doctor about lab results...


Oh and did I mention I am fed up with being ill - ? :D

Tuesday, January 12, 2010

Asthma causing you difficulties in cold weather?

Do you suffer from asthma? DO you have difficulties with cold weather? I had them for years and I did not know about this producer, and nobody gave me the information. Now that I have it, and have used their thermal mask, and have bought one for my son and one for my mother and we can all move freely out in the cold in spite of our asthma - my son cycles to work in -18*C without problem - now I want to share this information with everybody because it is so essential:

Get a thermal mask. There is a producer. Here is the website:

In Finnish: http://www.jonas.fi/fi/

In Swedish: http://www.jonas.fi/se/

In English: http://www.jonas.fi/en/

Aspartam in diet beverages

The aspartam in diet beverages opens up the pain receptors in the nervous system and adds on pain. Anyone who has fibromyalgia and who uses diet beverages with aspartam and who has pains that could be linked to the use of aspartam might want to consider excluding all aspartam in his or her diet. I have stopped using aspartam and I now drink mineral water and have much less pain than before.

Saturday, January 9, 2010

Sleep deprivation

Have woken up every 1 - 2 hours last night, either due to attacks of asthma or having to reload the washing machine in order to prevent its water pipe from freezing. (it is idiotically planned and done and not by us.) We have been hitting the cold records of this winter daily; thanks God the water pipes are not frozen yet!

I don't know how long I can go on like this: asthma shows no signs of improvement, I wake up due to it, can't sleep... I feel I am typing half-asleep, soon sleeping while sitting... they want to examine the thyroid still, must go to lab once more on Monday. Must go back to bed, I am sleepy and falling off the chair! And once I hit the pillow, the coughing starts again...

Wednesday, January 6, 2010

Steroids

Steroids improved my outhaling (PEF) values remarkably although they are still very poor, about 50% of the optimum. But it is better than yesterday's 20 - 25 % which means continuous feeling of suffocating and unability to do anything at all. Had several asthma attacks though. This morning (by 9 a.m. which is the time now) I have already had 3 - 4 attcks. Feel weak, tremble from all medication but am able to breathe. For once I am grateful about steroids. I feel the improvement. I have slept a bit better though not a bit longer... How would life feel with a decent sleep? There are things that confuse me and confuse my husband too but he is a great supporter and encourager. Yesterday I opened one social media site which I had not been using for ages, and I found tens of Christmas and New Year greetings from there - it felt like Christmas once more! I had also received messages, and I have found at least yet one who is praying for me - a total stranger but because he is a Christian, he does not feel like a stranger. During this disease, I have been betrayed and let down by one of my closest friends, and therefore it is comforting to see that God is taking care of me - other old friends are there, and complete strangers are used by God to provide me with prayer support. I am completely dependent on other people's prayers, I feel they are holding me above the surface and I feel every prayer in my being. I was praying, together with a friend, to see what plan God has for me because He has "mislocated" me in a country where I don't survive the outdoor air and weather without special equipment. I was praying for me to see some meaning in getting this seriously ill, weak and helpless. And God is answering: first, to show me that I cannot trust one of my best friends... second, that He is taking care of me in the form of even complete strangers, in addition to true good friends and family. Further, that I must and can rely on other people - something I have never been able to do. And still, that it is only Him I need, He will take care of the rest. God bless you all!

Tuesday, January 5, 2010

Depressed, happy, depressed....

No matter how I reason and try to be brave, I cannot help feeling depressed about having to be on steroids again - and looking out of the window and knowing that without special equipment, the out-door air would kill me. Have been shopping with my daughters today and I feel good that I can do it, that I still have income and can take care of their needs, and mine, and my husband's... Lots of wonderful things have happened today and yesterday and I want to say thanks to all of you who recognize yourselves here. You make the difference in my life. Yet there are people who seem to think that I cannot see through lies, and that I don't recognize indifferent attitude when I face one, even if it is masked. That I am ill does not mean that I am an idiot, or somehow immune to indifference. I am not. I could even tell I am nore sensitive than normally, recognize more nuances than I normally do. I pay attention to both good and bad things, and feel deeper about both. Perhaps this disease and this difficult situation was given to me to be able to see clearly - to be able to see who is the real friend and who is ready to let me down, for whatever reason.

Friday, January 1, 2010

My condolences

I would like to express my deepest condolences to the victims' families and friends and my sympathy to all those affected by the shooting incident in Espoo.