Today I had some labwork, a visit with a nutritionist, and a stop at my rheumatologists office to get some details about future treatments.
Ive been quite leery about seeing the nutritionist. Her job is to basically give me the ‘what-for’ in regards to foods Im supposed to cut back on, as well as suggestions on how to improve my nutrition and maintain my weight…..which at the moment has topped out at 118.
However, todays visit with her went better than expected. I definitely tried too hard and cut back on certain things way too quick (ie caffeine). I now have reasonable expectations and am extremely happy that Im still allowed to eat my beloved wheat bread. And yes, it definitely is the little things in life.
She told me that everyone has issues when they are faced with dietary restrictions. Her advice is to slowly (but not too slow) wean off the bad things and add the foods I have to add. She also told me that most success stories are patients with the best attitudes who really do want to get better. And I DO want to get better.
I got the approvals for two treatments….Benlysta and the albumin infusions. Im not sure what 25% in 50 ml (hypertonic) means, but I know the infusion lasts around 45 minutes to an hour long and I will get the infusions once a week to start. I could go 3 times a week depending on how my labs go, but Im hoping to stick to once a week, cuz well, I hate needles as much as I hate being stuck in a doctors office for an hour. Besides, if they up the infusions to more than once a week, that means IM not doing what Im supposed to be doing.
Im still waiting for a couple approvals, including one I had no idea about. That one is something that will suppress my immune system. If that gets approved, Ill definitely be staying away from anyone who even sneezes! But the upside is, my immune system will ‘stop’ attacking itself and I can actually heal.
Have I mentioned lately just how much I hate lupus?
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