I have so much to catch you up on, I’m not really sure where to start. I seem to have the UTI’s under control. I’ve made it two months without needing antibiotics. I am talking a prophylactic antibiotic nightly as a precaution. Hopefully I am through the cycle I was living inside. I was also given a round of IVIG therapy to boost my immune system. That is an IV of immunoglobulin. By boosting my immune system we are once…
I am half way through my Rituxan infusion. Chilling out watching Ink Master. I was smart this morning. I kept my arms covered despite being slightly warm. I know, all too well, that my cold arms do not help when trying to start an IV. I overheat so easily so there is usually a fan blowing right next to me. I might not feel cold but my arms and hands are always cold to touch. I kept a sweatshirt on…
Yes, I’m still in the hospital with a pneumonia. Today marks day 12. I can definitely have another blog about what is happening especially since being immune suppressed isn’t helping the situation. Most people look at February 14 as the day of love but it will never be that for me. No, for me it will always be the weekend back in 1998 when I was moving into my new house. Valentine’s weekend and my left foot started to go…
After all my worries over changing to Kesimpta, I’m now pretty darn happy I did. I felt fine after the shot on Thursday and all through the weekend. To not have to do a six hour infusion followed by 3 plus weeks of feeling lousy, I have to say I’m pretty excited. No more steroids. No more IV vein issues. No more aggravation with the former pharmacy over the correct infusion supplies. I must say that is a win, win,…
I started getting freaked out reading other people’s first shot reactions on the Facebook Kesimpta group. I thank Sherry for commenting on my Kesimpta delivery blog and telling me about the group but it didn’t help my nerves. Thankfully, I had a video conference with my neurologist yesterday. She explained Kesimpta is nothing like the interferon shots that I took for the first 12 years. The shots that still give me those horrible flashbacks that are causing all this fear….
It’s the day. It’s finally here. I’ve been doing these infusions for so many years now. I was on Tysabri for a few years prior. You”d think I’d be totally accustomed to these things by now, but I’m not. I get really anxious before the infusion starts. Partially because finding my veins for an infusion is not easy. If I’m doing blood work it’s very rarely a problem. However, whenever they have to find a place to keep an IV…
My Rituxan infusion has once again been a complete disaster getting the necessary supplies and drugs. I would love to blame it all on CVS specialty pharmacy but my doctor’s assistant is partially to blame. What started a month ago has come down to the wire yet again. My third box of supplies has just been delivered this morning. All I can say is thankfully I know how my drug is administered. If I didn’t, this would’ve been a bigger…
I finally got my infusion done on Saturday but it was still with a few headaches. I got a delivery on Friday of a box from the pharmacy that seemed to be another box of supplies. I still didn’t have the steroids, Benadryl, Saline Bag or the pump. It took me 50 minutes on hold until I got someone to pick up. From there I was bounced around to three different people. The last person I was speaking to was…
My big box from the pharmacy was delivered yesterday. In it was 250mg Solumedrol, 600mg of Rituxan, and a whole bunch of syringes and needles. I’ve done these infusion for years now. I’ve done Solumedrol infusion for even longer. This time opening the box made my stomach drop. I’m dreading this infusion. I’ve done it so many times yet this time I really don’t want to do it. I’m a little afraid. Years ago I was coming off of a…
I have to do bloodwork this morning. You think I’d be a lot less needle phobic with the amount of shots I’ve received over the years but I’m really not. I’ve from the earliest medicine for MS. I’ve been on Avonex, Betaseron, Rebif and even Copaxone. These are all medicines that required weekly or even daily shots that I had to learn to administer myself. For the first 12 years of my journey I had to do these. When Gilenya…
