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…