Evening......
I am very tired tonight. I had my IVIG infusion on Friday and remembered to take my pre-med on Thursday. I take 5mg of Prednisolone 3 times during the day on Thursday...it helps taking it the day before to try and stop all the pain and inflammation I get from IVIG. I have had horrible reactions lately and my haematologist was suggesting we change to a different IVIG product to see if we can reduce them.
The doctor who "admits" me to the day center for the infusion is an oncologist...head and neck cancer actually....pretty good to have someone on board with this issue and FA...since it is a big issue with FA. Although I don't have head and neck cancer..he just helps with me being in a private center to treat the IVIG problems. He is a good doctor and has been reading up on every aspect of FA and is very supportive. He is monitoring this fungal infection on my scalp right now. I put cream on it 2 to 3 times a day. I have had it for ages...it is taking a long time to clear up but when they swabbed it is came back as fungal...anyway..off the point. He suggested we add another concoction to my pre-med on the day and try some dexamethasone IV as well as the hydrocortisone...to reduce the inflammation I get with the IVIG. It certainly was a weird drug to have IV. I have given it as a nurse but never had it and it made me feel very strange.
I am SO tired from the IVIG now. I have not had heaps of pain though which is good. I just need to shut my eyes all the time. I had some pain but seem to be having a better run this time.
Isaac came and visited me in the day center again. He is always quick to say he doesn't want a bandaide and I tell him it is only for mummy. He associates the visit with cake...hehe....but unfortunately it was not served when he came to vist. I brought him some home with me. He is brave seeing mummy hooked up to an IV and he sits on my lap. It is nice to have him visit me.
Well, I am tired. That is all for the update.
Love you all,
Charisse
4 comments:
Always keep your eyes on the Lord, the only source of help! Praying!
Psalms 32:7 Thou art my hiding place; thou shalt preserve me from trouble; thou shalt compass me about with songs of deliverance. Selah.
Hello My dear, I am so glad to hear that the infusion went well and you didn't have as bad a reaction as the last time. I have been thinking of you a lot the last couple days, especially while I was knitting. I hope that is still going well with you. It sure helps to relax me and to make me feel better about myself. May the Lord continue to bless and keep you.
Your friend always,
Judy
This verse is so simple, but oh at times it's just so very hard to do. Continuing to pray!
Proverbs 3:5 Trust in the LORD with all thine heart; and lean not unto thine own understanding.
Jesus knows suffering. He suffered in our place!
Praying right now!
Luke 24:46 And said unto them, Thus it is written, and thus it behoved Christ to suffer, and to rise from the dead the third day:
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