Had a busy week. Ray’s Aunt Helen passed away last week. We went to New Hampshire Wednesday (which was my Mom’s birthday) for the wake. We saw cousins that we hadn’t seen in a long time and spent some time with Ray’s Mom and sister Donna and husband Dave. Unfortunately, these are times when we get to see people and catch up even though its a time of sadness. She lived a good long life. May she rest in peace.
So Ray and I stayed at the Hampton Inn in Dover as we always do when we go to New Hampshire. We left for Boston on Thursday morning at 9:30 for my first appointment at 12 noon. I had blood drawn from my port. And then I met with Caroline, the APRN. I was still coughing, even though I was feeling better. My mouth was inflamed and it still hurt to swallow when I ate. I was having indigestion and nausea. They didn’t like my cough so they sent me for a chest xray. My phosphate level was up to 9.5 – just keeps climbing. The xray came back fine – no issues. I was told to use my inhaler as needed for coughing fits, wheezing, etc. And to continue taking 1600 mgs of binder with each meal. I had not used my inhaler for almost a year – I have this for my mild asthma. Was told to use the Lidocaine for the inflamed mouth and throat. I was given a prescription for Prilosec to help with the indigestion. It works very well. The indigestion is from the binder pill. This is my off week – not taking the clinical trial drug, so I was surprised I still had to take the phosphate binder. We got home around 4:30.
Friday I called Mass General for something else for my mouth pain. They returned my call several hours later. I heard about Miracle mouthwash from my sister Diane – it’s a combination of malox, benadryl and lidocaine. The straight lidocaine tasted so nasty that when I tried it, I threw up! So anyhow, they called in a prescription for Miracle mouthwash. Much better. I was also told to do warm water and salt gargles. These helped a lot. Within a few days the inflammation of my mouth was gone but I still continued to have pain when I swallowed – so every time I eat it hurts. Nothing is helping with the pain. I have 2 spots at the base of my tongue that hurt when I eat also.
Today I decided I’ve had it with having pain every time I eat. This has been happening since May 22nd and it’s getting very frustrating. I called Mass General at 9:15 this morning and left a message that I want to stop taking the binder med because I believe it’s causing the swelling in my throat, thus making it hard to swallow and giving me pain when I eat. It’s almost 2 pm and I haven’t gotten a call back yet. I already ate breakfast and ate lunch and DID NOT take the binder. I still had pain when I swallowed/ate. I’m assuming it’ll take some time for the swelling to go down. We’ll see what the next couple of days brings. Other than dealing with the pain when I eat and the irritation from eating, I’ve continued to have a good amount of energy allowing me to do many things. I’m back cooking dinner and taking care of cleaning the house and doing groceries.
I went to the fabric store the other day and bought material and foam filling to make a cushion for a bench that’s on the porch. I worked on that yesterday. I’m going to cover a small footstool we got from Ray’s parents house when his Mom moved out with the same material. I’ve got a couple of toss pillows that I’m going to cover too. Opened up the sewing machine yesterday for the first time in many years! Still working great – had this machine since I was 16 years old. Yes, that’s a long time!! I’ve decided to put a zipper in the cushion so I can remove it from the foam piece and wash it. Of course I didn’t buy one, so I’ll be headed back to the fabric store soon!
Thanks everyone for your prayers, love and support. You are my strength!!!!
