Week 6 - Post Lemtrada
Nov 24-30, 2019
I hope everyone had a good Thanksgiving holiday. This week's post is late and I have a reason. I've been very emotional this week and I feel like all I am going to do in this post is complain and I don't feel comfortable doing that especially since I feel like most of my posts lately have been full of complaining. I grew up in the Midwest and that's not something we do. Let me qualify that; people from the Midwest do bitch, sometimes. We bitch about the weather, our boss, the traffic and lazy corrupt politicians but we do not whine. There is a difference: A. even though we bitch, we put our head down, scrap off the car and go to work (there are bills to pay and kids to feed). B. whining is done is an annoying voice. 😏 You can not hear my voice but I think I am moving more into whining territory. 😔 Plus we don't talk about our feelings and I've been feeling pretty miserable. There you go; another post of complaining and about feelings and I freeze up.
The first couple of weeks I was going back and re-reading my posts and correcting for grammar, etc. I haven't read any of my last four or five posts because they are just embarrassing. I want people who are or may be in the near future going through this process to know that these annoying things can happen and maybe they are little in the grand scheme of things but they can happen and still make you miserable for a bit. Putting this out there at all is uncomfortable for me but it is much easier to write about how great you feel and how great everything is going then how down in the dumps you feel.
On Monday night, I felt slightly like there might be a bladder infection coming on. By Tuesday afternoon, there was no doubt and it hit me hard. I was running to the bathroom every 5 to 10 minutes and had all the other text book bladder infection symptoms; no fever though. I upped the amount of D-mannose I was taking, took a cranberry concentrate and drank some cranberry juice. That definitely took the edge off within an hour. There is some disagreement about whether cranberry really helps a bladder infection; I am not sure if it will cure one but I have found that it makes the symptoms more tolerable faster then an antibiotic by itself. I contacted my Neurology office and my PCP. My PCP got back with me first. She was going to prescribe a Marcobib but when I told her I was already taking Sulfameth/Trimeth (Bactrim) once a day, she suggested upping it to twice a day because it's an antibiotic typically used for bladder infections. She said for 5 days. My Neurology office was good with that and also suggested I keep taking the cranberry concentrate (I wasn't taking it every night) and take a 1 tbsp shot of apple cider vinegar. It's supposed to lower your pH and make it harder for bacteria to grow. I also kept taking the D-mannose and upping my water intake. I forgot to do the apple cider vinegar shots except on Saturday and Sunday nights but I did everything else and the bladder infection never fully went away. As I am sure you can imagine with the extra water and my bladder not behaving in general, I was up once or twice a night to use the bathroom so sleeping was not great this week either.
And because it seemed like a good idea in August when I scheduled it, my son got all four of his wisdom teeth out on Tuesday as well (my husband took him). Then my husband and daughter left on Wednesday to visit family for Thanksgiving. I didn't want to risk flying and I didn't want them to stay home because of me. My plan was to hang out with my son, eat soft foods and binge on Netflix, which we did. There was just this underlying 'not great' feeling for me and I was a little out of it too. I even forgot to get the mail all week. 🙊 And my homemade gluten free version of the family roll recipe came out too dry so that was a big thanksgiving soft food feast disappointment. Sidebar: Did you know that there is a British version of Design Star? It's called Interior Design Masters and instead of their own TV show, they win a commercial design contract. We watched the whole first season. Wasn't too bad, at least they had cool accents.
The first couple of weeks I was going back and re-reading my posts and correcting for grammar, etc. I haven't read any of my last four or five posts because they are just embarrassing. I want people who are or may be in the near future going through this process to know that these annoying things can happen and maybe they are little in the grand scheme of things but they can happen and still make you miserable for a bit. Putting this out there at all is uncomfortable for me but it is much easier to write about how great you feel and how great everything is going then how down in the dumps you feel.
On Monday night, I felt slightly like there might be a bladder infection coming on. By Tuesday afternoon, there was no doubt and it hit me hard. I was running to the bathroom every 5 to 10 minutes and had all the other text book bladder infection symptoms; no fever though. I upped the amount of D-mannose I was taking, took a cranberry concentrate and drank some cranberry juice. That definitely took the edge off within an hour. There is some disagreement about whether cranberry really helps a bladder infection; I am not sure if it will cure one but I have found that it makes the symptoms more tolerable faster then an antibiotic by itself. I contacted my Neurology office and my PCP. My PCP got back with me first. She was going to prescribe a Marcobib but when I told her I was already taking Sulfameth/Trimeth (Bactrim) once a day, she suggested upping it to twice a day because it's an antibiotic typically used for bladder infections. She said for 5 days. My Neurology office was good with that and also suggested I keep taking the cranberry concentrate (I wasn't taking it every night) and take a 1 tbsp shot of apple cider vinegar. It's supposed to lower your pH and make it harder for bacteria to grow. I also kept taking the D-mannose and upping my water intake. I forgot to do the apple cider vinegar shots except on Saturday and Sunday nights but I did everything else and the bladder infection never fully went away. As I am sure you can imagine with the extra water and my bladder not behaving in general, I was up once or twice a night to use the bathroom so sleeping was not great this week either.
And because it seemed like a good idea in August when I scheduled it, my son got all four of his wisdom teeth out on Tuesday as well (my husband took him). Then my husband and daughter left on Wednesday to visit family for Thanksgiving. I didn't want to risk flying and I didn't want them to stay home because of me. My plan was to hang out with my son, eat soft foods and binge on Netflix, which we did. There was just this underlying 'not great' feeling for me and I was a little out of it too. I even forgot to get the mail all week. 🙊 And my homemade gluten free version of the family roll recipe came out too dry so that was a big thanksgiving soft food feast disappointment. Sidebar: Did you know that there is a British version of Design Star? It's called Interior Design Masters and instead of their own TV show, they win a commercial design contract. We watched the whole first season. Wasn't too bad, at least they had cool accents.
That brings me to just being tired of being tired and of not feeling good. I know that this journey has just started but anyone who has had MS for a while and who's main symptom is fatigue knows what I am talking about. It's a general feeling, you can't see it, you pretend that everything is fine but really you're not and you just hate feeling this way. The feeling really hits me when it feels like it's one thing after another. First it was the steroids keeping me up then I had the cut/irritation on the inside of my cheek, now I have a bladder infection that doesn't want to go away. Is any of that a big deal? Of course not; there are way worse things in the world but when you are sitting around the house looking at all the piles and projects that you would like to be doing but don't have the energy or concentration for, it gets to you.
I am on a new antibiotic called Ciprofloxacin and they are doing a urine culture which might be back tomorrow or Thursday. I can't tell if the antibiotic is working but I think so. 🤞 This antibiotic has almost as many possible side effects as the Lemtrada. I have to drink extra water because it might affect my liver. I can't eat or drink dairy with the medication because it might cause tendon issues; I can't drink caffeine; I can't take certain vitamins like calcium, iron, zinc or magnesium too close to the time I take the antibiotic and it might cause nerve issues...I wish I was joking...it's just slightly crazy.
Here's to hoping the antibiotic works and doesn't kill me. 🍷
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