When I’m out in my mobility scooter, as per the picture, people stare quite a lot. I suppose it’s my magnetic personality. Lol. It’s also because so often I don’t “look” ill. If people were able to see beneath the many layers I wear, they would have a different impression. As you can see with all my tubes I look like Robo Rev!
If I go through my body and it’s ailments these are the things you can’t see beyond my smile:
Painful feet and toes
Stiff ankles
Sore knees
Painful and stiff hips
Stomach ache
D&V
Swollen legs and ankles
Swollen and painful hands
Back ache
Stiff and painful shoulders
Neck pain and stiffness
Jaw pain and stiffness
Sores in mouth
Sore throat
Tooth ache
Very itchy skin
Low haemoglobin
Bronchiolitis
Dry eyes and mouth
Serious hearing loss
Constant nausea
I don’t very often write like this because it’s not me to just concentrate on all that’s wrong and all the things I can’t do. Sometimes though, it’s important to give the whole picture, so that those that look at me funny when I park with my blue badge, realise that there is so much more to people’s illnesses and disabilities than the eye can see.
When I saw my consultant this week I was told that they had been talking about me and trying to come up with a plan. The current idea is that they may start me on Rituximab. This is given via a drip once a week for 4 weeks initially. If that’s not good there is also the possibility of inflixamab. They are less keen on that because there are more side effects. The other avenue they are exploring is a new drug not licensed yet. They may ask for me to receive this on compassionate grounds. They are going to discuss all the options at their MDM and let me know in a couple of weeks.
In the meantime they have the results of my latest chest CT. Apparently the right side is better but the left side is worse so I still have to take my lung medicine. They have booked me in for another lung function test to assess how much damage, if any, has occurred due to the recent infection as well as the lung GvHD. The booking of this test has not been straight forward. I received a letter telling me I had failed to attend an appointment on Monday. Well I only saw the consultant Tuesday who requested it, so I could not have known about an appointment before that. I rang and explained and the man rebooked me for the day of my next clinic. He said he didn’t understand why I hadn’t received a letter or text about the missed appointment. All I could do was say I hadn’t and I’m normally very good at attending and juggling all my various appointments.
Later that day the same man rang me again and said that he has spoken to Haematology and they wanted me to have the test sooner than he had booked it. He offered me another date but I explained I couldn’t do that day as I was at Guys for ECP at the same time he was asking me to attend Kings. He said no worries we can keep the original appointment. I hung up wondering what it was all about and why he didn’t try any other time.
The next piece of the saga came in the post today when I received a letter telling me my appointment was on the day I can’t do. Grrrr! As it’s the weekend I couldn’t ring so will have to follow up on Monday. It’s so frustrating. Hey ho, that’s life.
Next week I have lots of appointments starting with a blood transfusion on Tuesday. You have to be really on the ball to manage all these commitments and competing demands. It’s almost a full time job in its own right.
I saw the Archdeacon this week and was saying how hard I find not being able to work. I can’t apply for a job though while I’m attending the hospital sometimes 4 times in a week.
Oh well I will just have to find other mischief to get up to. If you have any suggestions I’m all ears.
Sending you all some love and hugs for wherever you need it.
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