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!


Creepy appointment

During my last visit with the ophthalmologist he wanted me to call and get an appointment with my rheumatologist in order to try to figure out my eye issues and that no matter what the episcleritis always comes back. I’ve had it off and on (okay mostly on) for the past 6 months now and I’m really worried about my eye and my health in general. I’ve had lots of hurting joints lately plus the extreme tiredness and I just want all the issues to “end”.  Obviously I realize that we currently are in the middle of the season when I always feels worse.

Whenever I meet with my rheumatologist I always have high hopes for them to help me and most often they do. Well, this time I’m feeling totally ignored, helpless and to be honest a little depressed.

First off, my regular rheumatologist is off duty for I don’t know how long (and neither do the hospital) so I got an appointment with a doctor I’ve never met before. The bottom line of the appointment was that there is nothing wrong with my joints, all the blood work looks good and that I have pain is just what happens with the disease. He can’t do anything about it, “just take the painkillers” was his answer. He also seemed to claim that it’s only swollen joints that signals an active disease. Is that really so? When I tried to argue about it he wouldn’t answer in any other way. For some reason though he decided to put me on a higher daily dosage of the cortisone pills. Seriously!? I’ve just managed to lower that dosage so I’m not totally happy about taking more again but obviously I will comply with his decision.

As far as my eye issues goes he didn’t want to help out at first, that was not his expertise and if the ophthalmologist really wants help and discuss medications they could talk over the phone. He did agree though that the eye issues most likely are related to my RA. When I mentioned that I only have one eye which works he seemed to change his heart a tiny bit as he suddenly said he would talk with the other rheumatologists at their “therapy meeting” as he called it where they talked about some of their patients. He said he didn’t think anyone else would think that a medication change in regards to my biological meds would be helpful and that he would call me if any of them thought otherwise.

I did get an cortisone shot in my hip though which has been bothering me for a while so today I’ve been resting all day long. I had planned to be home from work anyway today as I still had a little bit of headache left after yesterday’s migraine attack. It was the first time I got an cortisone shot in the hip and my only conclusion is that it has to be the worst place so far in regards to not being able to relax or rest in any comfortable position, doesn’t matter if I’m laying down, sitting or standing, everything hurts too bad. At least now the hip should be better within a few days so I’ll suffer through the uncomfortableness of it all.

Oh and the creepy part of the appointment you might wonder? Well… for most of the appointment he was looking at my chest more than my eyes. I’m so going to complain to the hospital about that and I refuse to meet him ever again. At my next appointment in 3 months I’m going to request another doctor if my regular rheumatologist isn’t back.