Crikey this chemo knocks the stuffing out of you! Had my infusion yesterday, was nauseous and getting hot flushes all day they had to give me antihistamines, anti nausea pills, paracetamol and steroids! . Threw up last night and today I’m so tired and fluey I’m barely functioning.
I can’t wait to get home from work to lie down!
The nurse called me earlier to book my next one in for 4 weeks time, oh joy!
Now to get through the next hour till home time……
This is so true, love this quote.
I have got so many health issues at the moment and I’m in daily pain but I am still so happy. It really could be a lot worse. For some crazy reason my mental health is great which is such a surprise considering the crap I’m going through.
I am in a really good place right now and I’m very thankful for that. When the pain wakes me up at night or I can’t see because my vision has gone all hazy I am thankful for the things I can still do to help myself and I’m thankful for the support of my beautiful family.
Life is good despite the hardships and I’m thankful for that.
Christmas started off as a bit of a disaster for me, I saw my GP on Christmas eve with chest pains and next thing I knew I was in the back of an ambulance on the way to hospital. The disaster being we hadn’t done any of the grocery shopping for Christmas day dinner yet. My poor partner and daughter had to do it all on their own and cook it all too as I was still in hospital on Christmas day.
They decided to keep me in and monitor me as there had been some significant changes on my ECG compared to the last one. The EGC showed that my heart wasn’t getting enough oxygen and also my blood pressure was super high, at one point it was 210/145. Good news, I wasn’t having a heart attack but there is a problem that needs sorting out so I have been referred to a cardiologist. Like I need this on top of everything else that I have going on with my eyes.
Lets talk about the eyes for a second. I have now had two Rituxan infusions and the eye might be marginally better, still have redness and a lot of pain. I have also developed a swelling underneath the eye and my eye doctor now thinks that I could have Idiopathic Orbital Inflammatory Disease. I have some tests later this week to check that theory out. I have lost almost all vision in the left eye, looking through it is just like looking through a thick white fog. Don’t know whats going on there, probably need another injection to stop the corneal neovascularisation. I am seeing the eye doctor early next week, so I will get it checked out then.
I am so over being sick all of the time, my GP said I need to go straight to the hospital to see the doctor at eye casualty as I have sudden vision loss in one eye. You know what, I’m over it and I can’t be bothered sitting there all day waiting to be seen so it can wait until next week. Maybe a foolish move on my part but honestly 2015 was a shocker health wise and I am totally over it and the way things are shaping up already 2016 isn’t going to be much better.
I did manage to spread some Christmas cheer with my family it wasn’t all bad. Once all the shopping and cooking was done I got released from hospital just in time to enjoy Christmas dinner with the family. This is 2 years on the trot that I have been in hospital at Christmas, wonder what will happen next year!
Happy new year, hope it’s a healthy one for you all.
I saw my rheumatologist on Monday and they have changed me over from Methotrexate to Azathioprine (Imuran). Imuran is an immunosuppressant which will kill off my immune system to hopefully stop my immune system attacking my eyes. Reading the leaflet in with the med is quite scary the side effects are pretty horrible. Let’s hope it helps my eyes and I don’t have too many side effects. I will have to be careful around sick people and I need to wear sunscreen when I go out as I will be more prone to cancers.
I am on 50mg for two weeks, and then I get a blood test to make sure my bloods are ok then I go up to 100mg and then have another blood test two weeks later. Then I see my rheumatologist for a review.
Being on these strong chemo meds really got me thinking yesterday, if something happens to me and I have to go to hospital nobody would know the cocktail of drugs that I am on, many of which interact with other drugs, in particular the Imuran.
As I result of my thinking (oh why does thinking always cost me money!), I found via Google search a company called Medic Alert Foundation. You wear a bracelet with a telephone number to call and your membership number on and they hold a database with all of your medical history, drugs, next of kin, doctor’s details etc. In the event of an emergency they can be contacted by medical personnel who will be able to get my medical details. There is a yearly membership fee to stay on the database but the cost is negligible.
I thought this was a great idea, I didn’t like the cheaper stainless steel bracelets, I figured that if I was going to wear this bracelet every day I would have to really like it so I got a pretty sterling silver one.
It will give my family peace of mind to know that in the event of an emergency I can be taken care of properly because the medical team will have access to my history. Makes me feel better too, kind of like a security blanket.
The bracelet will be with me in the next week or so and I have completed all of my details in the database so I am good to go ☺
Saw the neurologist with regards to my chronic headaches yesterday. It was a good appointment; the doctor was very thorough in the history she took and in examining me.
The first thing she said to me was “what’s wrong with your eyes” LOL I get that all the time. She checked the backs of my eyes and that was fine in the right eye but my cornea in the left eye is hazy from the inflammation so she couldn’t see the back of that one, but I know they are fine because my eye doctor checked herself a couple of weeks ago so the neurologist was happy with that.
I have empty sella syndrome which means ……
In empty sella syndrome, the sella turcica (the bony structure at the base of the brain that houses the pituitary gland) enlarges, but the pituitary remains normal-sized or shrinks. People with empty sella syndrome have a defect in the tissue barrier that normally keeps the cerebrospinal fluid around the brain separate from the sella turcica. As a result, cerebrospinal fluid puts increased pressure on the pituitary gland and the walls of the sella turcica. The sella turcica may enlarge, and the pituitary gland may shrink.
With that and my chronic headaches the neurologist has scheduled an MRI for me just to be on the safe side but she feels that I have chronic migraine and there is nothing sinister going on.
We discussed pain relief options but unfortunately because of the amount of other meds I take drug interactions stop me from taking a lot of stuff that they would normally prescribe. She did prescribe Lyrica taken daily and Maxolon to take with aspro clear to be taken at the first sign of a migraine.
Headaches have been really good lately, but that may be because I am taking regular pain killers for my eyes so one hasn’t had a chance to develop. I’m already on so many meds that I am not going to start taking the Lyrica unless the headaches start coming back every day.
So all in all a positive outcome, will see what the MRI says but looking good at the moment.
I really enjoy walking for exercise. After a good walk I kind of get a happy buzz and feel really good about myself. Walking has so many great health benefits and it’s free!
I like to walk with a buddy, we walk our neighbourhood in the evenings after work and we like to hike the local Forest at the weekends. The dog loves it too! We strap on our Fitbits and away we go there is no stopping us!
A couple of weeks ago the whole family (partner, daughter and I) got a Fitbit Charge HR each. It has really helped to get us motivated to move more and get out and go for walks almost every day. The dog is loving it and getting fitter too.
It’s amazing how a little gadget can spur you on to do more. So what do I like about my Charge HR?
I love how you can monitor 24 hour heart rate, that’s a really great feature not having to wear a chest strap.
I like how it automatically goes into sleep function without having to press a button. With my old one I used to forget to take it out of sleep mode when I woke up thus ruining the whole days stats.
It has a proper watch buckle to do it up instead of those awkward pop in things that you can lose so easily. In fact my daughter had a Charge model for only one day before she lost it, she then upgraded to the Charge HR.
I find the badges, challenges and awards really motivating. It gives me something to work to. I really enjoy breaking my own goals and going further that I thought I could. I love to beat my friends too, I push that little bit harder if it is close in a challenge to try and win.
All in all I am really happy with the Charge HR, the one downside in my opinion is that it is not waterproof so you have to take it off in the shower. That’s a pain. I guess Fitbit are trying to get people to regularly take their tracker off after they had to recall the Force due to people getting horrible rashes under the band. I do think though that in a market where there are so many great trackers and lots of them are waterproof Fitbit should have put this feature in too. I would have loved the option to wear it in the pool for a swim.
Battery life has been pretty good, I have been getting around 5 days before I need to recharge. Pretty good I think considering the HR monitor is going constantly.
Last week I achieved my Marathon badge, I walked 42km and I won a couple of challenges so it’s a good start to my fitness campaign. I would recommend the Charge HR if you are in the market for a fitness tracker.
We are halfway through winter and on the cold dark nights we crave comfort foods. Although I am in sunny tropical Queensland we still feel the cold in winter as we are acclimatised to the heat. It’s a real challenge to find a warming winter food that isn’t loaded with fat, carbs and calories. We have found a hearty soup that really hits the spot.
We made a great slow cooker chicken and vegetable soup yesterday. It’s really tasty, easy to make and low fat.
All you do is chuck all of the ingredients into the slow cooker and leave it for 3 hours, it doesn’t get much easier than that.
2 cups dried pearl barley
500g frozen winter vegetables
1 litre chicken stock
1 litre water
1 teaspoon white pepper
I think that’s everything, I’m going from memory here.
After the cooking time season to taste and serve with rustic sourdough bread, yum!
We got 6 decent sized serves from the recipe.
This is so true, when I eat properly and exercise I feel so much better in mind and body. Even simple exercise such as a walk gives me a natural high and I feel so good about myself for going. When I am clean eating, my body feels better and my mind feels clear.
I am really feeling the benefit of healthier eating and daily exercise, my awesomeness rating is increasing every day!
Today I did over 12,000 steps, I’m very proud of that considering the health problems I am dealing with. As a family we are eating better and on our way to a healthier future. The future is very bright!