I’m off to see my consultant today, my appointment was pushed back from January. I guess a couple of months is not too bad, I’ve had appointments pushed back by eight months in the past. My consultant is a very busy man, as well as his hospital duties he’s also a teacher at the university. My consultant must also be a very rich man!
I feel a little unprepared if I’m honest. Normally I’d have a long list of things I want to ask but today there is just one thing…give me more IVIG* and more frequently. I’m in hospital next week for my fourth round of IVIG and each time I’ve had it, it gives me better results. I’m like a junkie waiting for my next fix, I want it so bad, I want to feel some relief from these horrid daily symptoms.
The first time I had IVIG the results were disappointing. I thought it would be a miracle cure and that I’d be able to walk again and get on with my life. It works for some people, so I wanted it to work for me. Sadly, I was so upset that I failed to notice any improvements despite there being some. After the second one I was so ill with side affects I was wary about having any more but my family had noticed improvements even if I hadn’t so they pressed me to try it once more at least.
The third one I went in with fewer expectations and I prepared well for the side effects. It was good, not only did I take more notice of the little improvements, I relished them. I took note of every night I slept without waking in spasm and pain. I took note of the longer time I could stand at the kitchen counter without the burning sensation in my legs that forced me to sit. I took note of the time I could sit and crochet, or use the lap top without the myoclonus jerking. I took note of the fewer spasms and cramps. I particularly took notice of the lack of side affects! The preparation had worked.
Then I took notice of when my symptoms started to get worse again.
That’s why I really want to ask to have them more frequently. My last IVIG was in January and the benefits lasted just a few weeks. I’m hoping my consultant is feeling generous, IVIG is expensive, but I need it.
*IVIG = Intravenous Immunoglobulin.
If you’ve been here regularly you will have seen my tales of Take Out Woe! Well, this week it changed to Take Out Wow!
Graham went out again on Saturday so I decided to risk another take out despite the last two being complete disasters. First I asked the little ones if they’d like food from Sophie’s, a nearby chip shop that delivered. They were perfectly happy and Boo and the Little Man ordered a battered sausage and chips and Star asked for chicken and chips. Then the oldest two said they wouldn’t mind chip shop food. So more sausages and a pie for the big son were ordered and I relished paying less than half the price of the usual take out.
I ordered way too much food but I didn’t mind as it had been so much cheaper and everyone was full and content. It was a chip shop take out win for this week!
I haven’t bought a single Easter egg yet!! I’m hoping to get some today, we are going to pop to the supermarket before going to the hospital.
The kids break up from school on Friday 29th March and don’t go back until April 18th! I love the Easter holiday but this one is going to be bit different with my being in hospital for most of next week. Thankfully, I don’t have to be there until lunch time each day, but I’ll be there until about 5pm. Because it’s bank holiday on Monday I won’t be in then, but I’ll probably have to go in on the following Monday for my final treatment.
Star also has a hospital appointment the following week and Star and the Little Man are also due in the clinic. So, it’s going to be an appointment filled holiday.
We are hoping to have some fun though, and I’ve already planned that we spend this Saturday doing a Cadbury Easter Egg Hunt at a local National Trust Property.
If you need some inspiration for Easter don’t forget to check out My Top Picks for Celebrating Easter.