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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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.

Supportive souls

blogger-badgeEver since I got sick I’ve been blessed with fantastic support from my hubby and my family.  I realize that not everyone are that fortunate so I want to dedicate a blog post to them.

My hubby is my trooper… my rock… the person that helps me more than anyone else, and the person who gets affected most by my illness. Ever since the beginning he has been my strength and guidance. He’s always there trying to make life easier for me during a bad day. He never complains, not even when my mood gets crappy due to the aching joints and I react in a not so pleasant manner. He reminds me that life is good. He reminds me that despite the occasional flare my joints are much better nowadays and I’m able to live a good life.

He can stand and look at me when I open a jar and I’m working really hard to hear that magical “click” which signals that the jar is open. He always ask if I want help but I quite stubbornly reply “no”, I want to do it myself! I suppose he likes asking because he knows I will get annoyed and try even harder to open it. 😉 Some days I succeed and he always smiles at me like “I knew you could do it”. He has teached me ways in order to hold the jar–or the milk cartoon for that matter–in a better way so I can manage to open whatever is needed to be opened.

He’s there when I’m having problems with my syringe and I just can’t get it to work–it looks like a “pen” and you need to have it angled correctly against the skin in order for the button to work so the needle appears. I get stressed and annoyed while he calmly and in his normal intelligent and analytical way informs me of what I’m doing wrong. Sometimes I then get even more upset because “I am doing it that way”, but of course… he’s always right in his analysis.

He has joined me on doctor’s appointments on several occasions. Nowadays I go to the hospital alone but in the beginning he was always there with me. I needed his brain to ask questions to the doctor. He always asked these clever questions which I just never thought of myself. He has held my hand when the doctor had to put a cortisone shot in a joint, and even worse when they tried to extract joint fluid from my knees. Seriously that is horrible, if I wasn’t laying down on those instances I would have fainted and fallen to the floor.

My family–mother, father and brother–acted as personal chauffeurs when I was in a wheel chair and couldn’t get out and about. My mother walked me to the doctor before I got the wheel chair because I didn’t trust my legs to actually get me there. (and I live aprox 2 minutes from the health center). They’ve picked me up at home when I’ve felt so bad from side effects of the medication and I didn’t dare to be alone. Nowadays a big part of their contribution is their fireplace. 🙂 During the Fall, Winter and Spring there is no better place to be on a bad day then in front of that fire. Unfortunately it only works if my bad day occurs on the weekend as otherwise I need to try an imagine a fire while at work. 🙂 Sidetrack… I’m happy that I never ever have skipped work due to my RA (knock on wood….) I’ve had extreme nausea due to medications, pain in all different kinds of joints, limping due to knee or foot problems but I’ve been there. Pain killers have helped me to get through the day but more importantly I’ve had something to do and people to talk to which has made the day pass by quickly. 

My mother-in-law has made fantastic wrist warmers in order to ease the pain during the colder season. I asked her for a pair and she made me 6! I’ve written about it in the post, Perfect present!

During the past 1,5 year I’ve also met new friends through the Facebook group for rheumatics I’ve written about earlier. They have changed my life! I know I’m not alone in this, and I’m so happy I’ve found others who suffers the same issues as I do. Obviously I’m not happy that they are sick, but to have others with the same problems and issues and who understand what I’m going through is very comforting. A few of these friends I’m even meeting regularly for a little support group session. We are always there for each other, either online or through a SMS.

To ALL of you, your constant and never ending support means a lot to me. THANK YOU from the bottom of my heart. ❤

I choose to…

blogger-badgeThe campaign of this year’s Invisible Illness Week is “I choose to…” and it was not hard for me to pick mine:

I choose too… stay positive and cherish each day!

Each day I wake up without pain or stiffness it’s really not hard to be positive and enjoy the day, it’s when I wake up and not feel good it becomes challenging. How can you be positive and enjoy the day when the joints hurt badly and you just want to stay under the warm cover and not move ever again.  Well, I have a few tricks.

1. I actually do get out of bed. I force myself to do it! There is nothing fun with being in bed. If anything it just makes you depressed. Usually before I’ve even gotten out of bed hubby has already given me a glass of water and my painkillers.

2. I spoil myself with an extra long and warm shower. (can’t wait until we’ve moved to the new house so I can spoil myself with a bath instead!)

3. My hubby spoil me with making breakfast. Sometimes he even makes it extra special and makes scrambled eggs.

4. We try to do something. Usually that something is going to my parents so I can sit in front of a nice and warm fireplace. I sit in a comfortable chair with a blanket and just stare at the fire as long as I need. If it’s summertime when I have a bad day we still might go to my parents but instead of a fireplace–okay, I would actually enjoy a fire even then but no one else would like it when it’s over 20 degrees Celsius outside :)–I try to enjoy the views of the ocean. Fire or ocean… both are a fantastic way to calm my soul and make even a bad day a good day.

5. Hubby spoil me again… now with dinner. Sometimes he uses his grill master talents on my parents BBQ or he makes me pancakes or waffles at home. On rare occasions he even spoils me with blueberries in the pancake batter!

6. When I go to bed in the evening I remind myself that today has been a good day and tomorrow I’ll do my best to have another good day. I get a goodnight kiss and then hopefully with the extra help of a little more painkillers I have a good nights rest too.

Bottom line here is that the most important thing to remember is to find something each day which means something special to you. Eat a nice dinner, watch your favorite TV-show, talk to a friend, take a bath, play a game on your smartphone, read a magazine, get spoiled by your loved ones… (I’m sure you get the idea here). It is possible to enjoy and cherish even a bad day. Just don’t have to high expectations, and do as much as you can with the (limited) energy that you have.

Before I end my second post of the Invisible Illness-theme I want to share an article I found the other day called The Spoon Theory. If you ever have wondered what it feels like to be chronically ill, read it! I could never explain how I feel and how it impacts my life in any better words than those in this article. The writer of this article has rheumatism but no matter the illness, physical or psychological this article will help you understand just a little bit of what life is like for anyone with a chronic illness. Got spoons!? 😉

30 things about my invisible illness you might not know

blogger-badgeToday is the first day of National (as in the US) Invisible Chronic Illness Awareness Week. I know I don’t live in the US (anymore) but I want to participate anyway. In every part of the world people suffer from invisible illnesses so I really think it’s important to acknowledge this week no matter where you are.

My invisible illness is only invisible to others, to me it is highly visible… it impacts my life every day. Even if I have a pain free day I know the disease is there through my meds. They are a constant reminder that my body is not well.

My invisible illness is rheumatoid arthritis. After 4 years I’m used to swollen and painful joints and to wake up with stiffness in my whole body. I have meds that works and most of the time I’m not having any major issues. I try to take care of myself in order to limit a flare or at least make them not as bad.  I know that I might wake up tomorrow and not be able to get out of bed. Living with rheumatoid arthritis is like being in a roller coaster blindfolded. It’s up and down and twists and turns but through the help of my fantastic hubby I’ve learned to accept my disease and to rejoice in each new day no matter how I feel.

I will devote this week to my illness and my first post on this subject is the “30 things meme” (please follow the link for more information on this subject):

1. The illness I live with is: Rheumatoid Arthritis (RA for short).

2. I was diagnosed with it in the year: 2009

3. But I had symptoms since: A few months before my diagnosis.

4. The biggest adjustment I’ve had to make is: Everything really… but having to adjust life so I always can go to bed early (especially on weekdays) has been rough.

5. Most people assume: Sometimes I get the feeling that people think I’m lazy and that it really isn’t so bad with my disease. I want to do things but sometimes I need to listen to my body instead of “pushing on”.

6. The hardest part about mornings are: Joint pain and stiffness, although nowadays with my ”new” medication the majority of the mornings are actually without major issues.

7. My favorite medical TV show is: Don’t watch medical shows. I barely watch TV period.

8. A gadget I couldn’t live without is: My iPhone

9. The hardest part about nights are: Waking up and being in pain and not finding a comfortable position so I can go back to sleep again.

10. Each day I take: 5 pills and vitamins.  I’m also taking Simponi (a syringe) once every 4th week.

11. Regarding alternative treatments I: Have tried eating gluten-free, as well as lactose-free and no red meat. Now, as of 2 weeks ago I’m trying a Paleo diet. I’m determend that something will eventually work so I can finally get rid of my daily cortisone pills.

12. If I had to choose between an invisible illness or visible I would choose:  Hmm, not sure but I think invisible. When I sat in a wheel chair for a short period in 2009 I got so many stares and people was looking… I felt inconvenient. At least with an invisible illness I can pretend nothing is wrong to the outside world and just talk to people about it whenever it feels right.

13. Regarding working and career: Being able to work is important to me. It was not until I started working again in 2010–I stopped working when we moved back to Sweden–that I started to realize that I could live with RA and the disease didn’t have to limit my life as much as I originally thought. I think I was pretty close to a depression but through finding a reason to wake up each day and go to work I started feeling better.

14. People would be surprised to know: How tired I am. For me, the worst part with RA is not the pain it’s the tiredness.

15. The hardest thing to accept about my new reality has been: Walking with a ”ticking bomb” inside my body. I never know how I’ll feel tomorrow.

16. Something I never thought I could do with my illness that I did was: Participate in a 5 kilometer (3 miles) race. I’m very proud of myself for being able to walk all the way, and it made me feel so good and happy about myself that I’ve decided to participate in two races next year. 🙂

17. The commercials about my illness: Can’t remember I’ve ever seen any…

18. Something I really miss doing since I was diagnosed is: Hmm, can’t think of anything actually. During the first years after my diagnosis I think it was harder. I didn’t want to plan and schedule things as I never knew how I was going to feel and if I had to cancel in the last minute. Nowadays with a medication that finally works I’m able to live almost as I did before I got sick. I’ve just had to learn what I need (such as comfortable shoes, a warm blanket, a good nights rest etc) in order to not have any issues.

19. It was really hard to have to give up: Shoes! 😦 I see all these nice looking shoes in the stores and so wish I could buy them but nowadays it’s comfy that matters over look. I still have my favorite shoes in my closet because you never know one day I might be able to wear them… at least for a short few hours at a party. I also miss being able to hold my DSLR camera, it’s too heavy for me nowadays.

20. A new hobby I have taken up since my diagnosis is: Geocaching and iPhone photography.

21. If I could have one day of feeling normal again I would: Go on a photography journey with my hubby and not think about having a comfortable place to rest or not being able to walk due to nature and elevation. I would sit on the ground eating a picnic and not worry about having to stand up again without assistance.

22. My illness has taught me: Positive thinking can change the outcome of even the worst day. And, a little stubbornness gets you a long way.

23. Want to know a secret? One thing people say that gets under my skin is: ”I’m also tired, it’s the season” (as in Winter time in Sweden and it’s dark most of the day and people are generally more annoyed and grumpy than usual). I just want to yell ”you don’t even know what tiredness is”! Tiredness is when no matter how many hours you sleep you never feel awake.

24. But I love it when people: Try to cheer me up with cute messages.

25. My favorite motto, scripture, quote that gets me through tough times is: Just Breathe

26. When someone is diagnosed I’d like to tell them: It takes time to accept a new life with a chronic illness. It can take months or years, but eventually you’ll get there. Allow time to “grieve”.  You will feel disappointed and angry and that life is unfair, but, even if it doesn’t feel possible you will suddenly wake up one day and realize that you can continue on with your life no matter what.

27. Something that has surprised me about living with an illness is: I thought my life fell apart when I got my diagnosis but I’ve learned to accept and embrace my new life. It is possible to still live spontaneously, to travel to new places, to plan and schedule my life and to cherish each day just as it is.

28. The nicest thing someone did for me when I wasn’t feeling well was: Just being there with me. During a really bad day I don’t need words I just need silent company.

29. I’m involved with Invisible Illness Week because: Just learned about this from a blog (30somethingwitharthritis) I found recently. I’m not living in the US but it’s important to me to participate in order to raise awareness. Everyone has their own little “hell” they are living in and by showing mine I know I can help someone out there. I also want to connect with others with chronic diseases because together we can give each other strength and advice.

30. The fact that you read this list makes me feel: Appreciative. Thank you for coming to my blog and taking the time to read this. It means more to me than you ever can imagine.