Infusion time

Four days ago it was once again time to go to the hospital for my medication. I’m quite happy to have a medication that only requires me to go there twice a year. It is much easier to schedule other fun things such as traveling when I don’t have a medication I need to take weekly or once a month.

The medication (Mabthera) works well for me and my RA is in remission according to the doctor. I guess I should be happy but considering I have so much pain in particularly my wrists and fingers I don’t feel like my illness is in remission. It feels highly active…

Yesterday I talked with my rheumatologist and was told to take more cortisone pills daily and then we will talk again next week. Normally a higher dose of cortisone works like magic and I feel no issues but even though I’ve taken more pills both yesterday and today my body do not feel good at all. 😦

Some days I just hate this illness and would do anything in order to have it go away.

IMG_0367
My bed during the infusion
IMG_0373
The machine handling the infusion.
IMG_0369
For the first time ever I had the whole room for myself. I actually missed having company… 
Advertisements

Time to refill

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.

The view from my hospital bed.
The view from my hospital bed.

 

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.

The infusion pump with the medication hanging at the top.
The infusion pump with the medication hanging at the top.

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! 😉

Lunch
Lunch – homemade gluten free sourdough bread with turkey and cheese, water and of course my favorite candy “Ahlrens bilar”.

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…

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.

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.