The unknown is the scariest part of this process. When things start feeling better, sometimes they are not, as I learned recently; I thought my flare up was over, and I was finally healing and at a reasonable baseline, only to find out my lesions were continuing to spread. Yeah, there's the big one, but there's another one as well, and now one in my cervical spine that gives me bad tingles when my neck is arched forward.
Today the sensation is just... well, numbing. An absolutely constant tingle in the legs that is distracting. It feels like they are being rushed of blood, which makes you not want to stand or walk - psychologically, it can make you feel disabled even though your motor skills are exactly the same. Like a short circuit in someone electronic, there's power going to the components, but they just aren't working properly.
It doesn't help that the oral steroid I'm taking absolutely tanks my blood pressure. I have to maneuver a fair amount at my job, and after standing up after looking in someone's ears this morning, all I could see was stars. Now, since I've been dealing with trouble symptoms like dizziness, nausea, seeing stars, lightheadedness, and general malaise for the last four years, I have become a master of feigning being okay while chatting up a person - and then suddenly coming up with a legitimate excuse to leave the room for a moment. But nevertheless, it is embarrassing, and it didn't put my day off at a good start. Yesterday I had pretty hard chest pain in the middle of an appointment and had to just keep talking through it, and then later today someone wanted essentially the entire mechanism of hearing explained before their test - usually I absolutely LOVE that part, but today I was worried about passing out. Just a bummer in general.
With the new issue of leaning my head forward causing more tinglies, it makes me apprehensive to say I'm doing better. I have to put faith in these steroids, but at the same time, I am not so sure. If I feel better without the drugs even if my MRI shows I'm 'getting worse,' which is the lesser of two evils?
I wish I got the medical bill in the mail already. All this waiting is driving me nuts. I know I can't afford it, but I would rather know just how much I can't afford, know what I mean?
Showing posts with label solumedrol. Show all posts
Showing posts with label solumedrol. Show all posts
Tuesday, April 15, 2014
Friday, April 11, 2014
Infusions: Fun for the Whole Family!
Today I started the second round of Solumedrol, an intravenous steroid that I will have again tomorrow and Sunday.
Unfamiliar with Solumedrol, or infusions, or the process? Well, let me educate you on some of the things I wish I knew.
An infusion center is a place, usually a little room in the basement of a hospital or clinic, that's express purpose is to deliver intravenous drugs to patients. They have to be open 7 days a week, because some drugs are time sensitive, and you can't just hope that the half-life of your drug will last through your weekend and workday. However, as nice as this sounds, an infusion center may be very far away from somewhere that is convenient. And don't forget that infusions often make you feel like hell afterwards, so organize transportation if you need it. They look like they do in medical tv shows - lots of chairs, relatively comfortable chairs even, in a little room surrounded with IV stands. It's meant to look more cozy than menacing, which makes sense when you consider that people who come in for chronic infusions (even you as an MS patient, or your friend the cancer patient, or your grandfather receiving blood transfusions for his low red blood cell count) need the place to look like a second home to keep from hating their circumstance.
The people who work in infusion centers are some of the nicest people in medicine you will meet. Now, I'm an audiologist, and I think we're high on that list as well, so it's saying something if I mention that the infusion nurses are very conversational and sympathetic. They need a pick me up, so the better your attitude, the better your experience. They people see dying patients every day, and often have to put people in pain to get central line (chest/abdominal IVs) medications directly to the system. The more patient and forgiving you are, the nicer they will be.
If you're lucky, you'll get a nurse that will put a warm, damp rag on your arm to get your veins to stick out. I'm a very skinny person, so my veins are just as small, and the poking process for the IV is less than pleasant. But communicate with your nurse - they'll understand if you tell them that spot hurts a little, or doesn't feel right.
Solumedrol comes in a little baggie, usually a full gram of the medicine (which is apparently a lot, I don't know enough now to disagree). It is given through the IV over the period of an hour to an hour and a half; the time given depends on your nurse and what you tell them. The drug can give you a headache, especially those first few times you get it, so the longer the infusion is the less likely you'll suffer from the foggy pain of the "Solly Headache," as I have so coined.
The drug has some interesting immediate side effects. Solumedrol makes your mouth taste like metal, almost immediately once it gets high into the bloodstream. Bring hard candy with you to make it less weird; it's odd because unlike actually tasting something that is metallic, when you swallow, nothing changes - it doesn't run down your throat, it just tastes funny, gross, icky. Cinnamon candies are my favorite. Drink water. Lots of water, and eat beforehand, because everything will have that weird tinge afterwards.
And afterwards, you may become ravenously hungry. Absolutely crazy hungry. And everything will still taste funny, but you'll be hungry. But, surprise, this drug can and likely will upset your stomach - heartburn central! I already have GERD and suffered from bad heartburn for days last week, so right now, everything hurts to eat regardless of the antacids - but maybe you'll be lucky!
Solumedrol makes falling asleep really difficult. So be prepared to buy a sleep aid. And for me, this drug makes me feel more fatigued than anything in my life. It puts me in a fog of sorts, a delayed reaction, one that makes me a little bit dizzy and a little bit disoriented.
Well, that's my run down. Have you had Solumedrol and want to add your experience? Leave a comment, the new patient readers appreciate it.
- Margo
Unfamiliar with Solumedrol, or infusions, or the process? Well, let me educate you on some of the things I wish I knew.
An infusion center is a place, usually a little room in the basement of a hospital or clinic, that's express purpose is to deliver intravenous drugs to patients. They have to be open 7 days a week, because some drugs are time sensitive, and you can't just hope that the half-life of your drug will last through your weekend and workday. However, as nice as this sounds, an infusion center may be very far away from somewhere that is convenient. And don't forget that infusions often make you feel like hell afterwards, so organize transportation if you need it. They look like they do in medical tv shows - lots of chairs, relatively comfortable chairs even, in a little room surrounded with IV stands. It's meant to look more cozy than menacing, which makes sense when you consider that people who come in for chronic infusions (even you as an MS patient, or your friend the cancer patient, or your grandfather receiving blood transfusions for his low red blood cell count) need the place to look like a second home to keep from hating their circumstance.
The people who work in infusion centers are some of the nicest people in medicine you will meet. Now, I'm an audiologist, and I think we're high on that list as well, so it's saying something if I mention that the infusion nurses are very conversational and sympathetic. They need a pick me up, so the better your attitude, the better your experience. They people see dying patients every day, and often have to put people in pain to get central line (chest/abdominal IVs) medications directly to the system. The more patient and forgiving you are, the nicer they will be.
If you're lucky, you'll get a nurse that will put a warm, damp rag on your arm to get your veins to stick out. I'm a very skinny person, so my veins are just as small, and the poking process for the IV is less than pleasant. But communicate with your nurse - they'll understand if you tell them that spot hurts a little, or doesn't feel right.
Solumedrol comes in a little baggie, usually a full gram of the medicine (which is apparently a lot, I don't know enough now to disagree). It is given through the IV over the period of an hour to an hour and a half; the time given depends on your nurse and what you tell them. The drug can give you a headache, especially those first few times you get it, so the longer the infusion is the less likely you'll suffer from the foggy pain of the "Solly Headache," as I have so coined.
The drug has some interesting immediate side effects. Solumedrol makes your mouth taste like metal, almost immediately once it gets high into the bloodstream. Bring hard candy with you to make it less weird; it's odd because unlike actually tasting something that is metallic, when you swallow, nothing changes - it doesn't run down your throat, it just tastes funny, gross, icky. Cinnamon candies are my favorite. Drink water. Lots of water, and eat beforehand, because everything will have that weird tinge afterwards.
And afterwards, you may become ravenously hungry. Absolutely crazy hungry. And everything will still taste funny, but you'll be hungry. But, surprise, this drug can and likely will upset your stomach - heartburn central! I already have GERD and suffered from bad heartburn for days last week, so right now, everything hurts to eat regardless of the antacids - but maybe you'll be lucky!
Solumedrol makes falling asleep really difficult. So be prepared to buy a sleep aid. And for me, this drug makes me feel more fatigued than anything in my life. It puts me in a fog of sorts, a delayed reaction, one that makes me a little bit dizzy and a little bit disoriented.
Well, that's my run down. Have you had Solumedrol and want to add your experience? Leave a comment, the new patient readers appreciate it.
- Margo
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