Hello 2015!

It’s about time to get this blog going again. Summer has ended, the Fall has come and gone and we’ve celebrated Christmas. I’ve been more than lazy during the past 6 months mostly due to my eye issues. Now it’s 2015 and time to get back into the normal routine again. I will try to write more regularly as of now.

I’m happy to report that my eye is healthy again and I’m working full-time as of late October. The Mabthera medication finally got rid of the scleritis. I’m so happy! I’m still on regular checkups to make sure nothing happens. My next Mabthera session is in 3,5 weeks. I’m so not looking forward to it… now when I know how I felt after the previous IV sessions I’m more nervous than ever.

As far as the deck construction goes we are almost finished. The whole deck is done except the side trimming. The house is painted and looking nice! We’ve done a few things on the inside during the Fall but we still have many things left to do.

Right now I’m at the end of the Christmas holiday break. On Wednesday it is back to work after 19 days off. I’m actually looking forward to start working again but I’m not looking forward to waking up so early in the mornings. 😉 Sleeping to at least 8am is quite nice… Lazy mornings are so precious when you don’t have them every day!

If you don’t think I’m updating my blog often enough I suggest you follow me on Instagram, id “ceciliamagn”. 🙂

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Vacation

For the past two weeks we’ve been on vacation. There are two words which can describe this period: hard work and illness.

My father, brother and hubby have worked with our new patio. They have done major progress but we are still far from being finished. In total the patio will be ~100 square meters.

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My hubby has also started painting the garage! The house we’ll have professional painters do but he decided to save some money and paint the garage by himself. My father-in-law has joined in a few days doing some painting as well. The front of the garage is all finished and looking so great with the olive green color!

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On the first day of our vacation I went to the hospital for my second infusion of Mabthera. The actual treatment went very well and I did not experience any side effects. Afterwards I did get tired but it was not as extreme as after the first infusion. I did rest a lot during the first few days. I also noticed a little nausea which turned to the worse 3 days after the hospital visit. I could barely eat anything except banana and crackers. After a few days with this and feeling extra crappy after eating breakfast and taking my morning meds and figured that maybe it wasn’t only Mabthera to blame but also my other new RA pill–this medicine is called Imurel–I’ve been taking for the past month. I was expecting a phone call from the hospital to hear back on my blood work because Imurel has been playing yo-yo with my liver and when the doctor finally called I was told to stop with Imurel. Not only was the blood result not good in regards to my liver but she said that it was most likely to blame for my stomach issues too. So, no Imurel for two weeks and then new blood work again. For the past three days I’ve been feeling much better! I only wish I’d felt like this during the whole vacation!

During the periods when I haven’t felt like crap my mother and I was baking on the grill! We’ve tried it three different times of sponge cake and baked oat crumpets. Major success! I’ll write a post soon about our new fantastic grill: Big green egg!

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Tomorrow it’s back to work again! Our vacation might be over but we still have plenty of more weeks to enjoy the Swedish summer!

Miserable side effects

Three days ago it was finally time to go to the hospital to get my new medication Mabthera. In total I was at the hospital for 5,5 hours.

When I arrived I got three types of medication which everyone gets before they start pumping in the drug in your blood. The three were a painkiller, a cortisone pill and a antihistamine.

After waiting an hour it was finally time… they administered the drug during a 4 hour period and every thirty minutes the dosage of Mabthera got higher. At first I didn’t notice anything at all but after an hour I started to get a headache at which time I got a new painkiller. Another hour passed and I suddenly noticed I had a stuffy nose. Apparently no major issue as long as I didn’t have any problems with my breathing. After another hour I could barely stay awake so I started sleeping. My mother, who joined me as moral support during the infusion, luckily had brought books with her so she could enjoy the time even though I wasn’t awake. I’m sure she had preferred sitting at home reading but I’m grateful she kept me company.

After 4,5 hours the drug was in my body and I was free to leave. My father picked us up and we drove back home to my parents place. I immediately laid down in the sofa and it didn’t take long before I was sleeping again. 😴

At 6pm my mother woke me up and 45 minutes later I was at home. At that time my hubby waited for me with a cozy fireplace (first time we used it) and I was sitting in front of it while he made dinner. It was our 13th anniversary but as I didn’t feel so good we didn’t do anything special and as soon as I’d eaten I went straight to bed. 😴😴

Now, three days after the medication all I want to do, still, is… sleep. I’m so tired it’s annoying. Tiredness is common with RA so I thought I would be used to it but this tiredness is nothing like I’ve experienced before. On top of that I’m noticing a little dizziness every now and then. I’ve talked with some other people having Mabthera and clearly the tiredness is common. I’m just hoping it will go away quickly!

I worked from home Tuesday and split my day between working and sleeping. Yesterday and today I’ve worked my half day at the office. Even though I’m so freaking tired and my mind is not in it’s happiest state I do manage to stay awake and get things done. 😉 I enjoy the few hours at work as am actually doing something useful and are around people I enjoy spending time with. My manager asked today if I shouldn’t take it easy and stay at home but I replied that I feel better if I’m at work a few hours as that keeps my mind busy with other things.

I’m not noticing any improvement with my eyes yet but I suppose I need to be patient. In 1,5 week it’s time for the second infusion. Oh how fun… more tiredness! 😳

Oh well, I’m sure I’ll be back to my normal self in no time. 😉

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Time for healing

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!

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!

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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.

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.