Spring is in the air in Norway. Garden work, screaming and noisy children everywhe
re, but kind of nice anyway. Another month has passed filled with, from my point of view anyway, rather good news, and here I am sipping wine again, naturally. Not a Portugese taste of spring this time, but a rather odd Czech red, "Frankovka Barrique", which I brought with me from Prague. Its medium bodied, mellow and has a distinct nose of dried plums, light in alcohol at 11,8%. Anyway, where wore we... yes, sip, this is the blog where I share the last months ups and downs and what have you not, to you, my dedicated friends and readers. Yes, both of you. Where to start?
Firstly, NAV (Thats the Norwegian "Social Services Office") has agreed to sponsor my M.Sc. in Political Economy next fall and the school has confirmed my admitance :) As long as my theses passes with a grade equal to a C or higher, which shoulden't be a problem if I just keep on working steadily. For me, this is great news! I was really supprised how open and positive their approach to "my case" was. The way it works in Norway, if you are not able to work due to medical reasons, you can apply for different actions to be supported by the government (that is paid for) if you can argue that these actions will increase your chance of getting back to work once your health has improved. They call it "intermediate work-support-actions-blablabla..." You will actually receive a monthly pay, kind of disability pay, while you set goals for your action/plan and upkeep/follow the plan. I had a short meeting with one of their consultants and, after presenting my plan and arguments of why they should support my continious studies, she agreed on the spot, over the table so to speak, to give me the maxium sponsorship they offer, which is 100.000 NOK (about 12.500 EUR/17.000USD) over two years in tuition fees, plus they will support me with some extra funds for books and such. Really great news. Now I know what I have to do the next two years and that is really reassuring. I have a plan, I'm not just sick, I am a student. Which is OK. Due to the ressesion many young workers beeing laid off have decided to return to their studies this fall so I guess the average age at campus is increasing the next semester(s).
My application for a "youth-appartement", another social welfare offer, is also accepted and hopefully sometimes this autumn I can move into a bigger appartement, for a very subsidised rent :) They even keep some of the rent you have paid and deposit it in a savings account which is yours to keep after you move out. A great policy for young and pre-established. In practise this means that a young person, fullfilling a rent contract over 5 years, will leave the contract with about 120 000 NOK (15.000 EUR/20.000USD) cash in pocket. Hurray!
My visit to the optometrist went well, that is to say, of course he did'nt do the specific tests the rheumatologist asked for at the first consult (he wants to bill the gov. as much as possible I presume, or maybe he is just being cautious I dont know) he simply did a complete eye-check up and booked me in for a second consult which is due in a couple of days time, where he will do my second Schirmers test and meassure my blinking and what ever. NOT a lot of rocket science involved when it comes to diagnosing Sjøgrens anyway, I mean stick two paperbits in your eyes for 5 minutes and check how wet they get? Spit in a cup for 15 minutes..(?) Whatever. He was very sympatic this guy and did prescribe a years subsidized supply of eyedrops, of all kinds of types, gels, creams... and that is cool as I used to spend like 100 USD a month just on teardrops. Now I am only to pay like 20% of that or something since an optometrist has confirmed that I need it. Did you say Red Tape?! But I guess one of the reasons we can offer as many different social welfare services as we do in this country is due to the massive amount of red tape we use... what can you do?
Since my last post I have done another couple of weeks with 100mg mino and reacted very strongly to it. At first I didn't realize how "herxy" I was. Some days just lying on the couch not able to do anything! On 50 and 75mg I was doing great, skiing and attending school, but the IP really sneaked up on me, and before I knew it I was absoloutely far out there.... Don't underestimate the herx! It came to a point where I almost could not do anything. Extreme fatigue, pain and lousy motivation. After some weeks I decided to stop the abx for a while to catch up with my theses, and the rest of the world. I really have to hand in my theses before June the 16th, everything depends on that. And I kid you not; Three days or something after I stop the abx I am feeling so much better. More energy, less fatigue, extremely less brainfog. I can get up in the morning and actually get something done! Again I experience that it's not until you actually stop taking the abx you really feel how much these tiny tiny doses are actually affecting you. The running nose and the burning scalp dissapeard after a couple of days, my dyslexia has improved, everything just seem so much easier, I am a different person.
So that is the second time I've had to pause the abx due to school exmans and paper hand ins. And the second time I feel such a big difference in my symptoms when I stop them. Its a source of relief in one way, but also a source for anxiety. Firstly it confirms yet again that symptoms increase when I take these very small doses of abx, combined with the Olmetec, supporting the hypothesis behind the treatment. Everything turns out to be the way the other patients consistantly are reporting, lightsensitivity, brainfog, you name it. But it also makes me abit anxious with regards to my coming studies. Will I manage to combine these studies with the protocol?
My strategy will be to try. As easy as that, and equally difficult at the same time. When I have turned in my paper I will start up again with the abx and try to make it to the phase where I combine two abx'es before school starts in mid-August and I will just have to develope tecniques to manage.
Working out was completely impossible the three weeks I was taking 100 mg of mino, but now the last week or so I have managed to upkeep my programme, which is good, my muscle mass has increased since January and I am happy with that. I monitor my body composition every month and its motivating to follow the development, still a bit overweight though, I blame that on my candy and wine bursts, but I am still down in body fat since January.
This months highlight might have been my weekend in Prague attending a work-shop about chlamydial Infection. Prof. Marshall held two presentations Saturday, which a Norwegian Doctor, with several patients on the same treatment protocol, and one of his patients, joined me to attend. Sunday was also very nice, sunny, and not so busy in Prague at the moment, compared with the summer months. We met a group of fellow-MP's from the Netherlands and spent the day walking around Prague with them and Prof. Marshall. I believe everyone really appriciated the chance of meeting Prof. Marshall in person and ask him small questions about the science and the developement of the treatment in general.
Our hotel had a very nice location just a couple of hundred meters from the National Museum where the work shop was held. Since I always strive to meet the locals when travelling, and I definately needed to brush up my czech (have not spent serious amounts of time there since the early 90's) I decided to check out the closest etsablishments to my hotel on the night before the work-shop.... maybe not a too smart move... Started rather slow with a couple of beers at the local anarchist pub, where the interior basicly consisted of pit-bull terrier dogs and one "Terminator 3" pin-ball machine, which accompanied the Spanish Death Metal nicely. "AAAAAAArghhhh AAAAArghhh da me otra Sangria, Aaaargh Aaaaaaaargh". Cool. The beer was good though. From their I advanced to the local posh/up-scale cocktail bar, 25 meters away, where I met a nice Swedish couple, where the guy turned out to be a client of my former employer. We discussed cultural differences between Norway and Sweden for a couple of beers before I ended up next door to my hotel where the local middle aged gay-bar was located. There we drank Slivovice (Plum-shots) and played a Czech card game I havent played since childhood until 4 o'clock in the morning. Needless to say I was a bit reduced the next day after barely 3 hours sleep and a severe hang over.
Prague is a very touristic city though, its like a big Disney Land fairpark, I think I'd prefer Paris over Prague, for a week end, or I would travel outside of Prague to the small villages and tasted the local food and beer, but thats me... being half-czech myself and a retired chef maybe makes me more sceptic to the kind of cooking they are doing in the center, all in all it was OK, but nothing special.
Anyway, nightlife: Luckily the next morning the organizers of the work shop adressed my needs and brought me 3 cans of red bull and another 3 Slicovice! There is no other country than in Czech they would do that on a medical conference, I passed the 0ffer, well, I did have one Slivovice after Lunch with Jiri, one of the organizers. I think one of our Dutch friends had the last one, before lunch! :).
So sum up: Herx is strong, need a break to complete my theses, dont underestimate the herx!rather busy, but everything else is going good.
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