Sneezing and coughing

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I’ve  been at home sick for 9 days now and it is so boring… Gosh what I miss going to work! 

Early last week it started like the flu with fever, cold, cough etc but this Monday I went to the doctor because I still felt quite bad. They took a bunch of tests plus that he put me on sick leave for the week. I had hoped I  wouldn’t need it all week but I’m still not felling good. Today the doctor finally called and told me I needed antibiotics for 10 days. Apparently I had a, to me, “non pronounceable bacteria”. I’m hoping I will feel better very soon though as we are flying–got a OK to go from the doc–to Gran Canaria on Saturday! I’m so excited… two weeks in a warm climate! 

Time to refill

Yesterday it was time visit the hospital to get another set of my medication Mabthera. I was extremely nervous before as I knew how I felt the last time (July 2014) when I had the last session. Turned out I got a lower amount of medication (500 ml in total) this time so I’m not as tired as I was during the first two sessions. Last time I felt like I was asleep even though I was awake. This time I can actually use my brain, although yesterday I did feel a little fuzzy. Also, this time I don’t need a second session after two weeks which I had at the initial start of the medication this past summer.

I arrived at the hospital early. As I had a time at 8am I was lucky to be first in the room so I could pick my bed. I like the one in it’s own corner as I get no neighbours that way. It feels a little more private even though the room getsT fully occupied. When I left the room some hours later it was completely occupied, even the chairs.

The view from my hospital bed.
The view from my hospital bed.

 

I got a more modern infusion pump this time around. Every 30 minutes the machine makes a noise and a nurse comes in and changes the setting so more liquid passes through. The older machines just make a beeping sound, but this one played a few tones. Almost felt like it was going to sing! 😉 They start on a very low dose (25ml per hour) and at the end it’s 220ml per hour. Before they put in the needle and give me the medication I get three pills (a painkiller, antihistamine, and cortisone) in order to avoid side effects. This time around the only thing I felt was a little tickle in my nose, kinda like if I had been around a cat or dog. Except that no issues at all.

The infusion pump with the medication hanging at the top.
The infusion pump with the medication hanging at the top.

As I only got 500ml in total this time (last time it was 1000ml) it didn’t take as long as previous times but I didn’t know that until they came with the medication and told me that it wouldn’t take 4-5 hours. I had packed sandwiches, water and candy. Actually the candy part was not planned, my original idea was to be a little bit more healthy… I forgot the grapes on the kitchen counter at home though so bought candy in the small store at the hospital. Of course they had fruit in the store as well but why be good and get that! 😉

Lunch
Lunch – homemade gluten free sourdough bread with turkey and cheese, water and of course my favorite candy “Ahlrens bilar”.

After the session I was resting at home. I’m resting today as well, but I’m so happy that I’m not as tired as the last time. I actually think I can start doing fun stuff tomorrow already! Just need to keep in mind to not be in a place with too much people as my body is quite sensitive to getting sick right now. Two days before I need take the public transportation to work. I will eat plenty of c-vitamin before that…

Hello 2015!

It’s about time to get this blog going again. Summer has ended, the Fall has come and gone and we’ve celebrated Christmas. I’ve been more than lazy during the past 6 months mostly due to my eye issues. Now it’s 2015 and time to get back into the normal routine again. I will try to write more regularly as of now.

I’m happy to report that my eye is healthy again and I’m working full-time as of late October. The Mabthera medication finally got rid of the scleritis. I’m so happy! I’m still on regular checkups to make sure nothing happens. My next Mabthera session is in 3,5 weeks. I’m so not looking forward to it… now when I know how I felt after the previous IV sessions I’m more nervous than ever.

As far as the deck construction goes we are almost finished. The whole deck is done except the side trimming. The house is painted and looking nice! We’ve done a few things on the inside during the Fall but we still have many things left to do.

Right now I’m at the end of the Christmas holiday break. On Wednesday it is back to work after 19 days off. I’m actually looking forward to start working again but I’m not looking forward to waking up so early in the mornings. 😉 Sleeping to at least 8am is quite nice… Lazy mornings are so precious when you don’t have them every day!

If you don’t think I’m updating my blog often enough I suggest you follow me on Instagram, id “ceciliamagn”. 🙂

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Vacation

For the past two weeks we’ve been on vacation. There are two words which can describe this period: hard work and illness.

My father, brother and hubby have worked with our new patio. They have done major progress but we are still far from being finished. In total the patio will be ~100 square meters.

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My hubby has also started painting the garage! The house we’ll have professional painters do but he decided to save some money and paint the garage by himself. My father-in-law has joined in a few days doing some painting as well. The front of the garage is all finished and looking so great with the olive green color!

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On the first day of our vacation I went to the hospital for my second infusion of Mabthera. The actual treatment went very well and I did not experience any side effects. Afterwards I did get tired but it was not as extreme as after the first infusion. I did rest a lot during the first few days. I also noticed a little nausea which turned to the worse 3 days after the hospital visit. I could barely eat anything except banana and crackers. After a few days with this and feeling extra crappy after eating breakfast and taking my morning meds and figured that maybe it wasn’t only Mabthera to blame but also my other new RA pill–this medicine is called Imurel–I’ve been taking for the past month. I was expecting a phone call from the hospital to hear back on my blood work because Imurel has been playing yo-yo with my liver and when the doctor finally called I was told to stop with Imurel. Not only was the blood result not good in regards to my liver but she said that it was most likely to blame for my stomach issues too. So, no Imurel for two weeks and then new blood work again. For the past three days I’ve been feeling much better! I only wish I’d felt like this during the whole vacation!

During the periods when I haven’t felt like crap my mother and I was baking on the grill! We’ve tried it three different times of sponge cake and baked oat crumpets. Major success! I’ll write a post soon about our new fantastic grill: Big green egg!

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Tomorrow it’s back to work again! Our vacation might be over but we still have plenty of more weeks to enjoy the Swedish summer!

Miserable side effects

Three days ago it was finally time to go to the hospital to get my new medication Mabthera. In total I was at the hospital for 5,5 hours.

When I arrived I got three types of medication which everyone gets before they start pumping in the drug in your blood. The three were a painkiller, a cortisone pill and a antihistamine.

After waiting an hour it was finally time… they administered the drug during a 4 hour period and every thirty minutes the dosage of Mabthera got higher. At first I didn’t notice anything at all but after an hour I started to get a headache at which time I got a new painkiller. Another hour passed and I suddenly noticed I had a stuffy nose. Apparently no major issue as long as I didn’t have any problems with my breathing. After another hour I could barely stay awake so I started sleeping. My mother, who joined me as moral support during the infusion, luckily had brought books with her so she could enjoy the time even though I wasn’t awake. I’m sure she had preferred sitting at home reading but I’m grateful she kept me company.

After 4,5 hours the drug was in my body and I was free to leave. My father picked us up and we drove back home to my parents place. I immediately laid down in the sofa and it didn’t take long before I was sleeping again. 😴

At 6pm my mother woke me up and 45 minutes later I was at home. At that time my hubby waited for me with a cozy fireplace (first time we used it) and I was sitting in front of it while he made dinner. It was our 13th anniversary but as I didn’t feel so good we didn’t do anything special and as soon as I’d eaten I went straight to bed. 😴😴

Now, three days after the medication all I want to do, still, is… sleep. I’m so tired it’s annoying. Tiredness is common with RA so I thought I would be used to it but this tiredness is nothing like I’ve experienced before. On top of that I’m noticing a little dizziness every now and then. I’ve talked with some other people having Mabthera and clearly the tiredness is common. I’m just hoping it will go away quickly!

I worked from home Tuesday and split my day between working and sleeping. Yesterday and today I’ve worked my half day at the office. Even though I’m so freaking tired and my mind is not in it’s happiest state I do manage to stay awake and get things done. 😉 I enjoy the few hours at work as am actually doing something useful and are around people I enjoy spending time with. My manager asked today if I shouldn’t take it easy and stay at home but I replied that I feel better if I’m at work a few hours as that keeps my mind busy with other things.

I’m not noticing any improvement with my eyes yet but I suppose I need to be patient. In 1,5 week it’s time for the second infusion. Oh how fun… more tiredness! 😳

Oh well, I’m sure I’ll be back to my normal self in no time. 😉

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Time for healing

So I’ve not posted in quite a while now… sorry about that! 😞 I promise more fun post will arrive in the not so distant future…

I’m still having major issues with the scleritis and it’s gotten to the point where it hurts too much to sit in front of the computer so as of 1,5 week I’m working part time and on sick leave part time. I’m not liking it at all but not much to do about it. I guess I shouldn’t complain too much as it gives me more time during the day to enjoy the summer and the house! 😊 I’m trying to stay away from the “screen world” the rest of the time. I realize I’m quite addictive to my iPhone though… Instagram etc is so much fun! 😉 Still, I’ve been pretty good in limiting the amount of time I use it.

The good thing is that finally my rheumatologist has taken it seriously and has been in discussions with the ophthalmologist and I’m starting new medications shortly! Simponi has worked great for my joints but it’s a newer medication and apparently they do not know how good it works for eye problems so I’m switching to another one called Mabthera which the ophthalmologist claims should work wonders even after the first intravenous infusion.

I will continue to work part time until I’ve gotten the first infusion which hopefully happens in 1-2 weeks. I’m quite nervous to start with a new medication as you never know how it affects the body and what “fun” side effects that might show up. The good thing with Mabthera is that I don’t need to take it so often. There are two infusions within two weeks after each other and then it can be between 6 and 12 months until the next infusion. The bad thing with Mabthera is that I need to go to the hospital for the infusions.

It is time to get rid of my eye issues and feel well again!

Adios Espana

It’s time to say goodbye. We’ve checked out and are waiting for the bus to take us to the airport.

It has been a fantastic week. Sunny and warm most of the time. I’ve tried new types of exercises and have lots of motivation to continue on when I get home. I’ve also meet many new friends.

I could definitely have stayed a little longer in this climate but I’m looking forward to come home and see my hubby again.

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