Infusion Day 3

Infusion Day 3

October 17, 2019

Almost a wrap on day 3.  I've got about 30 more minutes until I can go.  I had planned to start typing this up this morning then finish this afternoon but I was really tired and unmotivated today.

I was able to get some sleep last night; taking the melatonin really helped.  I did take 10mg like my doctor's office suggested.  I was asleep by 10:30 and slept until about 5:30, although I did lay in bed until 7 (my alarm was set for 7).  Not a completely restful sleep unfortunately, I woke up at least 3 times to use the bathroom and I was sweating every time.  I am in my forties so I am not completely unfamiliar with night sweats but this was obviously due to the steroids too.  Still, I'll take it versus staring at the wall for hours thinking about how 'Texas Constitutional Amendment 4" is poorly worded and confusing and I need to warn voters. Because that's what any decent person thinks about at 3 in the morning. 😉

The stiffness in my knees was gone in the morning and the swelling in my legs was down.  As I am sitting here, I can tell that the stiffness is coming back though.  I did get a call back from a One-to-One nurse last night and they really couldn't help me much because they didn't have anything in their "system" about swelling or stiffness. 🙄 For context; the company that makes Lemtrada has a nurse-line program called One-to-One.  You are assigned a nurse who takes you through the process and answers any of your questions and they have a 24/7 call line; it's actually nice and helpful but they have limitations because they are not your doctor.  Now, I am more familiar with their limitations.

I am still doing really well overall.  Things I have noticed: still running hotter than my normal.  My blood pressure (top number) was in the 112-120 range today.  Two of my readings were 121/55 and 114/61.  I feel warm and sometimes flush on my face but not running a fever.  My knees are stiff again and legs a little swollen but not any more then yesterday.  I am home now so I have my legs raised above my heart.  My new IV must be close to a nerve because I was getting a stinging sensation sometimes when the vein was being flushed or a new infusion bag was started and sometimes for no particular reason.  I decided to keep it because it wasn't constant but I think I will have to have it taken out after tomorrow.  I was really sleepy and warn down as I mentioned earlier.  I mostly listened to an audio book and drifted in and out of sleep.

I mentioned the morning medicine routine and the Lamatrada infusion routine but I am also keeping up with my same everyday vitamin routine.  After I eat lunch, I 've been taking the Valcyclovir aka horse pill; a Vitamin C, Vitamin B and Zinc (those are my typical vitamins).  After an hour or two, I've been taking a cranberry concentrate that is new and was recommended to combat bladder infections.  With dinner, I take a Vitamin K2 and Magnesium and at bedtime I take Vitamin D drops and my LDN; again I was taking these before as my regular routine.

The infusion center I've been going to clearly has a good hiring and training process.  All the nurses there are super patient and friendly.  Most of them are younger (as in younger than me) and I've seen them with some more difficult patients.  Difficult meaning either the patient themselves are particular or maybe they just have a harder time finding an accessible vein.  Today, my husband had mid-day meetings and wasn't able to bring lunch up to me.  The nurse who was helping me today, microwaved the frozen dinner I brought with me and brought it out to me with a plate and fork.  I so appreciated that.

I guess that's about it for today.  I already took 5mg of melatonin; hopefully that will be enough to get me off to sleep but not so much that I am bouncing off walls in the middle of the night to get to the bathroom. 😳 Oh, I did email my doctor about the stiff and swollen knees.  I didn't feel it warranted a phone call but I haven't heard back yet.  I did find out that A. they don't recommend drinking herbal teas for at least 3 months after and B. I can and should take a pro-biotic while I am taking the antibiotic (for 3 months after my last infusion day).  I feel like I had some of these things written down. I guess I better go back through my notes.