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.
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 😊
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.
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.
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! 😉
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…
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!
I received a letter from the hospital Friday. The letter stated that the doctor had tried to call me but couldn’t reach me. Well, I was in a meeting during that time so didn’t notice his call, besides, he had promised to call me one of the two days after my appointment 1,5 week ago at which time I made sure to have my mobile not on mute even at work. Obviously I don’t expect a call a WEEK after!
They had discussed my case at the “doctor’s conference” and clearly the other doctors did not agree with his decision. Now they want me to take my Simponi shot every third week instead of once a month. Not sure for how long because he didn’t specify that. Together with almost double the amount of cortisone pills each day maybe this will do the trick…
I wish I would have more positive thoughts about the fact that they have change the prescriptions in order to get rid of the eye issues but for some reason I’m not convinced yet.
On Tuesday I’m going on vacation! A friend and I will be traveling to Fuerteventura (one of the Canary Islands) for a week. I’m hoping the warm weather will be one part of getting back on track. It’s a training week at a sport hotel and when we booked it almost 5 months ago I expected to have exercised a lot before the trip so I could attend many of the classes. At this point I’m just happy if I can attend a few without major issues to my joints. My hip is still bothering me so we’ll see how it goes. At least I’m going to enjoy being in a sunny and warm climate. No “must-do’s” at all, just relax and enjoy life! Can’t wait!
I had a checkup at the hospital today and for the most part the doctor thought everything was good and actually told me I didn’t have to come back on a regular checkup until next year. I’ve gone there every 3 month (the first year after my diagnoses) and then every 6 months.
My tendon sheat though was not good and he actually said he was worried about it. He said that it was necessary to give me a cortisone shot even though I’ve gotten 3 already during the past 5 months. Not doing it could be much worse. I was told to be careful with my foot and not do any activities involving jumping and similar (walking is fine) as that could cause my tendon sheat to “break”. If it did it means ~6 months of rehabilitation. He gave me some exercises to do starting next week in order to make my tendon sheat stronger. I’m planning to call my physical therapist on Friday (they don’t allow phone calls until then) to schedule an appointment so she can help me out with more exercises and make sure I do them correctly.
The cool part about the cortisone shot though was that he used ultrasound in order to see the inflammation better. He has used that twice on my joints before but today was the first time I actually looked at the screen while he did it. It was unreal to see the needle inside my tendon sheat and he moved it around in order to spread out the cortisone a little. The coolest part though was that I could actually see small bubbles leaving the needle! Very cool!
After 3 weeks without any RA medication it was finally time to take my Simponi shot today (just 12 days overdue) and on Thursday I’ll take methotrexate again. After talking to my doctor last Thursday I’ve been on a higher dosage of cortisone the past days as my body clearly started to complain due to no medication. I’ll take the higher cortisone dosage tomorrow morning as well and then I’ll go back to normal again. It will be great to be back on track with my medication.
Right now I’m at home resting. I went to the hospital again today as the cortisone shot I got last week didn’t help at all. Thursday I noted that the pain was back again and Friday morning was so bad that I called the hospital about a new appointment. Luckily they had an opening today already.
The doctor was a little unsure of giving me another shot at first but after examining the foot for almost 10 minutes and checking it agains the foot that is well he decided to give it a try. He seemed to think that the foot has some kind of “trauma” from my fall in early December. I’m not totally convinced since I had problems with my foot joint even before the icy road decided to “knock me down”.
Before the actual cortisone shot he gave me a local anesthetic in my joint mostly because he wanted to see if he could get any joint fluid. The local anesthetic don’t feel as bad as the cortisone shot so that was nice but now when I’m starting to sense my foot again it’s not particularly comfortable! Hopefully I’m much better tomorrow and I’m keeping my fingers crossed that the cortisone will work this time!
He also wanted me to go home and rest my foot so now I’m resting in the sofa and I’m completely bored… nothing fun on the TV during daytime. I’m debating whether to read a book or do some studying about agile software development…