Infusion time

Four days ago it was once again time to go to the hospital for my medication. I’m quite happy to have a medication that only requires me to go there twice a year. It is much easier to schedule other fun things such as traveling when I don’t have a medication I need to take weekly or once a month.

The medication (Mabthera) works well for me and my RA is in remission according to the doctor. I guess I should be happy but considering I have so much pain in particularly my wrists and fingers I don’t feel like my illness is in remission. It feels highly active…

Yesterday I talked with my rheumatologist and was told to take more cortisone pills daily and then we will talk again next week. Normally a higher dose of cortisone works like magic and I feel no issues but even though I’ve taken more pills both yesterday and today my body do not feel good at all. 😦

Some days I just hate this illness and would do anything in order to have it go away.

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My bed during the infusion
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The machine handling the infusion.
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For the first time ever I had the whole room for myself. I actually missed having company… 
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Weekend fun

Due to my medication session at the hospital Friday we’ve had a quite relaxing weekend. I’ve not felt as tired as earlier times (not counting Friday when I mostly slept once I got back from the hospital) and last night I even went for a short walk. It was a total of 1,27km but I felt like I walked for at least 5! I’m glad I had these two days for taking it easy before work tomorrow.

My brother and father finished the last things with the porch. And I decorated it with Lego figures.

My brother and father putting the finishing touch on the porch
My brother and father putting the finishing touch on the porch
One of the new Lego figures hiding around our porch. I also put two more figures into the cement and then we have the so called "party girl" from last year.
One of the new Lego figures hiding around our porch. I also put two more figures into the cement and then we have the so called “party girl” from last year.

We also meet a friend (former co-worker of mine) and her husband at Domarudden for a little breakfast outing. It started raining a few times but we were lucky and sat at a picnic table under a tree so we didn’t get wet. Before they arrived we tried the outdoor gym 😊

Trying out the rowing machine at the outdoor gym
Trying out the rowing machine at the outdoor gym
Breakfast party 😊
Breakfast party 😊

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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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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