Surprise letter!

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!


So tired!

The month of February has so far been extremely ruff on me. The crippling tiredness that pops up every now and then with my illness hit me hard two weeks ago. I’m usually feeling more tired during this part of the year as my joint issues tend to be more active and thus the tiredness shows up. As I’ve felt pretty good though despite a problematic hip I didn’t think much about it until suddenly… boom… I can’t seem to sleep enough. Being woken up by the alarm clock in the morning is just so stressful. I’m in bed by 8 pm some evenings and I’m still so tired at 6 am the next morning that I barely can get out of bed. I force myself to do it of course and somehow I’m able to work my 8 hours a day. Some days I’m so tired I keep wondering where my brain cells are. 🙂 Luckily work keeps me awake and busy but once I get home I barely want to do anything. Best days of the week is undoubtedly Saturday and Sunday morning when I can sleep in. I can’t wait until this tiredness is gone. I seriously dislike the tiredness, in fact I much rather have pain in my joints.

To make matter worse my eye inflammation is back despite me being on the preventative cortisone eye drops for a month now. When I went to the ophthalmologists (fancier word for eye doctor 🙂 ) a few days ago I was told to call the hospital and have a talk about my medication with my rheumatologist. My regular rheumatologist is off duty until I don’t know when but I got an appointment with another doctor in two weeks. I’m really not looking forward to start talking medications again. I’ve felt so good for so long with the medications I have now and there are certain drugs (read methotrexate) I wish I didn’t have to think about taking again. I’ve been without it for 1,5 years now and I’ve felt so good. I seriously hope the doctor comes up with another solution.

Now I’m off to bed soon at the time is just barely 6.30 pm. I need to be at the airport at 5 am tomorrow morning so that means my alarm clock rings at 3.30 am. Yikes! I’m going to be so tired tomorrow! Luckily I have 2 hours I can sleep on the airplane. I’m going to Germany on a business trip for a few days.