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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Mission accomplished!

For the fourth year in a row I signed up to participate in Vårruset–a 5K race for women every year in May–together with 5 of my rheumatic friends. We always sign up together as a group as we then receive a picnic basket to enjoy after the race.

For the first time in 4 years we actually had fantastic weather all evening long. Previous years we’ve had clouds, wind, rain and even freezing cold. To be able to walk the race in short sleeves was amazing! To not mention actually taking time to enjoy the picnic afterwards.

For two years now I’ve had major issues with my hip but with the help from my physical therapist in addition to cortisone shots when the pain/inflammation as been to severe I’ve managed to have it more or less under control. During the past 2 weeks I’ve walked longer distances (two times just over 4K and once 5K) in order to prepare for the race and have not had any major issues with the hip. My wish for the race was to be able to be under the one hour mark and I’m very proud to say that I did manage to accomplish it! 😃

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Runkeeper stats

Towards the end of the race I started to get an intense pain in my hip plus problems with my left foot. I did not slow down though because I was focused on getting to the finish line “in time”. I also had a friend walking with me so I was able ignore the pain pretty good while talking to her.

On my way home after the race the pain got worse and when I got off the bus around 5 minutes from home I could not walk anymore due to the pain. Luckily my hubby was there and walked home and came back with the car to pick me up. I had a hard time fall asleep but after awhile I guess the painkillers finally kicked in as I did manage to sleep around midnight.

I’m still in pain this morning so I guess pain killers will be my best friend today. I’m hoping to be back to normal pretty soon. When I’ve walked these distances the past weeks I’ve not gotten issues with my hip but I haven’t pushed myself for a specific time then instead I’ve always walked slower in order to actually manage to reach the distance I wanted to accomplish.

I’m also extremely happy to have managed to participate in the race considering my fatigue. As its always lots of music and noise during a race I did bring ear plugs but never used them.

Considering everything with the hip and fatigue I’m so proud of myself for participating yesterday! Major accomplishment and maybe a good sign that I’m on track of getting better.

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Bus adventure

I’ve not written in quite some time because I’ve not felt good. I’m having major issues with fatigue and it’s gotten so bad that I’m currently on full-time medical leave from work. I always have some level of fatigue due to my rheumatoid arthirits but this is worse than it has ever been. I’m having problems with my concentration and my memory as well as having difficulties with too much noise. Just sitting on the bus or train makes me feel exhausted.

I’m trying to do some daily adventures in order to get out of the house. Yesterday I went to the gym for an appointment with my physiotherapist. Great time as usual and I’m feeling it in both arms and legs today 😉

As we are currently in the high peak of the pollen season I’m trying to limit being outdoors too much so today I decided to go on a bus ride to Ljusterö, which is a island part of the municipality where I leave. The bus ride also includes a trip on a car ferry. I went to the end station, looked around and went back on the bus before it left again (which were 15 minutes). A nice little journey and it kept me out of the house for 3 hours. When I came hope again I had to rest on the couch almost all afternoon. I can’t wait until I’m back to my normal self again but until then I’ll just have to enjoy my small adventures.

Here are some pictures from today…

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The start of the journey – my bus stop
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The car ferry
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Linanäs – the end station
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Linanäs
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Back on the bus again, it was not so crowded at the beginning of the journey 🙂
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Waiting to embark he ferry to take us back to the mainland. 

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 😊

Healthy drink

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Golden milk and turmeric paste

 

For the past five evenings I’ve ended my day with golden milk (also called turmeric milk). This drink is anti inflammatory and helps the immune system, aching joints etc. I thought I would give it a go!

So far I’ve only noticed that I sleep better but anything that will help my well-being and not make it so easy to become sick I must try. If this also helps to further elimit my joint pain (omitting lactose and gluten/grain has been quite noticeable) I’ll be forever grateful.

I’ve made a turmeric paste which I keep in the refrigerator and take a small amount every night and mix with milk and coconut oil and honey (i’ve sometimes omitted this though). It taste extremely yummy! Perfect way to end a day! So far I’ve only tried it with regular cow milk but I’m planning to try almond milk as well so I can drink this and be completely dairy free.

This is the recipe for the turmeric paste I used:

0,5 dL ground turmeric
0,5 dL freshly grated ginger
1 tsp ground black pepper
2 dL water

Mix and boil on medium heat until it becomes a paste. Stir repeatedly while cooking. Put in a small glas bowl and store in the refrigerator.

Recipe for golden milk:

Heat 2 dL of milk of your choice.
Add 1 tsp turmeric paste, 1 tsp coconut oil and 1 tsp honey.

Enjoy!

Crappy immune system

I’m still sick…. it’s been going on for two weeks now and I just feel like crap! Even crappier is that I met the doctor again today and he put me on another two weeks of sick leave. Oh I so hope I get well way before that! 

If that wasn’t enough of crappy things we’ve also had to cancel our long awaited 2 weeks vacation to Gran Canaria. I should have been enjoying nice warm weather and our own private pool right now! Instead I’m spending my days in the sofa either sleeping, resting or watching Netflix. I’m a little nostalgic and enjoying “Friends”. I’m on the last episodes of season 5 right now…

So what is wrong with me you might wonder?! Well it’s not a regular cold after all… and neither the flu… a not so nice bacteria called “moraxella catharalis” have decided that my body is a perfect place to have some fun! 😞 I started with antibiotics last week and yes it has helped but I’m far from healthy still.

I seriously hate–yes that is a strong word but in this case oh so true–that my RA causes my immune system to be open for infections. It’s so easy for the silliest of bacillus to enjoy my body. 😢

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…