Update on my arthritis (it's long ... sorry!)
/
In short, I hurt. A lot. In a lot of places. Occasionally, some of my joints lock up painfully for a bit (think a charley horse muscle cramp, but in a joint instead of a muscle). One of the hallmark symptoms of rheumatoid arthritis is morning stiffness ... well, I get that along with middle-of-the-night feeding stiffness. Name just about any task that's common for a mom of a newborn and a toddler (fastening snaps, buckling the car seat, changing diapers, holding and cuddling my sweet little ones, and so on), and odds are that, yep, it's painful for me. So, to sum all this up, my arthritis is flaring. Badly.
(By the way, I realized after a question from a friend who reads this blog that I've never really explained what a flare is. Basically, it's an increase in disease activity. A lot of autoimmune diseases have valleys and peaks, periods in which the disease calms down and periods in which it really takes off. Those valleys are called remission, something I've yet to experience with RA, and those peaks are flares.)
On the bright side, my rheumatologist was able to see me today, so I didn't have to wait until my next scheduled appointment (which was two weeks from now). I've said this before, but it's worth repeating: I really love my doctor. That's such a huge blessing! I left with three prescriptions and a plan to add a fourth drug if need be (and to potentially add a fifth drug to counter side effects from one of the other drugs, but we'll see). While it's nice to have options now, I'm having a tough time dealing with the reality of all these meds. Sure, the meds are better than the alternative (that is, being physically disabled due to joint and soft tissue damage in about five to ten years and getting progressively worse from there). Sure, they'll help limit damage that RA can cause in places other than just your joints (like cardiovascular health, since new research indicates that having RA may double your heart attack risk, and lung stability, since RA can inflame the lining of your lungs). Sure, they should make me feel better.
But they also come along with some not-so-desirable side effects. Basically, since RA is a nasty disease, the drugs that fight it also have to be a little nasty. If you read my blog, you're already aware of some of the problems I've had with prednisone (sensitivity to dose changes, trouble metabolizing carbs at higher doses, and so on). I was hoping to stop prednisone or at least cut back, but we may actually increase it to deal with this flare. Not yet, but that's plan B. Plan A is adding a couple new drugs. One of my new drugs is notorious for causing stomach issues, so odds are good that I'll need to take another prescription medication to treat that side effect. Another drug can cause retinal damage, so I'll have eye exams every three months or so to catch it early if that occurs. That side effect is rare, but it happens enough that those eye exams are a must. Since that retinal damage is often irreversible, even if caught early, it's important to catch it before much damage occurs. I'll start one of the new drugs tomorrow, and then the other will be added to my drug cocktail in a week and a half. We need to add them at different times to be able to monitor side effects (in other words, if I started them both tomorrow and had a reaction to one of them, we wouldn't be sure which one was the culprit), plus I need to get a baseline eye exam before starting one of them. I'll also have blood tests every couple of months for a while to check on my liver function, since both of the new drugs could cause problems there.
Plan C, if both Plan A and Plan B don't improve things, is adding one of the big gun drugs. There actually is one compatible with breastfeeding! (All of the drugs I've mentioned so far are compatible with breastfeeding, since - even though they could potentially mess with my system - they don't really make it into mama's milk. So there's no danger for Robbie!) However, the big gun drug that we have planned is usually given with another drug (that isn't okay while nursing), and if it's given without the back-up drug, your body can create antibodies against it and render the drug useless. Since there aren't too many big gun drugs out there, we really don't want to risk rendering one of the options inert if we don't have to, so we're holding off on starting this one. The other not-so-exciting part about that drug is that it's an IV infusion that takes two hours to administer and that has to be given every four-six weeks. We'll be adding one of the big gun drugs after I stop nursing, but the one we plan to add then would be a self-administered injection once or twice a week, so it will be easier to deal with as far as scheduling goes. If we have to go to Plan C, I may be calling on some of you, sweet friends, to watch Jocelyn (and maybe Robbie, though I'll probably just bring him with me in the beginning) during those infusions.
And Plan D is weaning Robbie earlier than planned so we can have some more treatment options. I hope it doesn't come to that. It's not just about the benefits of nursing, though that's part of it; I just really love nursing. I love the bond with the baby. I love being amazed by God's design for natural nourishment. I love being able to be a little lazy (i.e., not clean bottles, not think about how much formula to bring with me if we're going out, and so on). And, to be honest, after having my body essentially malfunction over the past couple of years, I love being able to take pride in my body's ability to do something right. I keep saying that we're prepared to wean earlier than his first birthday if it comes to that, but it'll be tough coming to terms with that when/if it does. So, for now, I'm thankful that we have a Plan A, B, and C first.
But, more than that, I'm thankful that God is in control. That He knows how this is going to turn out. That it'll turn out in accordance with His plan. That His plan is always what's best for me, even if that's not apparent in the present circumstances. That there's a difference between facts and truth. On that last note, I think I need to go re-read that post and be reminded of the truth God revealed to me in His Word when I was first diagnosed and everything was scary. 'Cause I'm sort of in that "everything is scary" place again. Good thing I know the guy who said, "I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world." (John 16:33)
Oh, and as a random side note, last night I scheduled 21 blog posts to go up between now and next Monday. New baby = lots of pictures = lots of posts! So enjoy those, including the batch you got today!
(By the way, I realized after a question from a friend who reads this blog that I've never really explained what a flare is. Basically, it's an increase in disease activity. A lot of autoimmune diseases have valleys and peaks, periods in which the disease calms down and periods in which it really takes off. Those valleys are called remission, something I've yet to experience with RA, and those peaks are flares.)
On the bright side, my rheumatologist was able to see me today, so I didn't have to wait until my next scheduled appointment (which was two weeks from now). I've said this before, but it's worth repeating: I really love my doctor. That's such a huge blessing! I left with three prescriptions and a plan to add a fourth drug if need be (and to potentially add a fifth drug to counter side effects from one of the other drugs, but we'll see). While it's nice to have options now, I'm having a tough time dealing with the reality of all these meds. Sure, the meds are better than the alternative (that is, being physically disabled due to joint and soft tissue damage in about five to ten years and getting progressively worse from there). Sure, they'll help limit damage that RA can cause in places other than just your joints (like cardiovascular health, since new research indicates that having RA may double your heart attack risk, and lung stability, since RA can inflame the lining of your lungs). Sure, they should make me feel better.
But they also come along with some not-so-desirable side effects. Basically, since RA is a nasty disease, the drugs that fight it also have to be a little nasty. If you read my blog, you're already aware of some of the problems I've had with prednisone (sensitivity to dose changes, trouble metabolizing carbs at higher doses, and so on). I was hoping to stop prednisone or at least cut back, but we may actually increase it to deal with this flare. Not yet, but that's plan B. Plan A is adding a couple new drugs. One of my new drugs is notorious for causing stomach issues, so odds are good that I'll need to take another prescription medication to treat that side effect. Another drug can cause retinal damage, so I'll have eye exams every three months or so to catch it early if that occurs. That side effect is rare, but it happens enough that those eye exams are a must. Since that retinal damage is often irreversible, even if caught early, it's important to catch it before much damage occurs. I'll start one of the new drugs tomorrow, and then the other will be added to my drug cocktail in a week and a half. We need to add them at different times to be able to monitor side effects (in other words, if I started them both tomorrow and had a reaction to one of them, we wouldn't be sure which one was the culprit), plus I need to get a baseline eye exam before starting one of them. I'll also have blood tests every couple of months for a while to check on my liver function, since both of the new drugs could cause problems there.
Plan C, if both Plan A and Plan B don't improve things, is adding one of the big gun drugs. There actually is one compatible with breastfeeding! (All of the drugs I've mentioned so far are compatible with breastfeeding, since - even though they could potentially mess with my system - they don't really make it into mama's milk. So there's no danger for Robbie!) However, the big gun drug that we have planned is usually given with another drug (that isn't okay while nursing), and if it's given without the back-up drug, your body can create antibodies against it and render the drug useless. Since there aren't too many big gun drugs out there, we really don't want to risk rendering one of the options inert if we don't have to, so we're holding off on starting this one. The other not-so-exciting part about that drug is that it's an IV infusion that takes two hours to administer and that has to be given every four-six weeks. We'll be adding one of the big gun drugs after I stop nursing, but the one we plan to add then would be a self-administered injection once or twice a week, so it will be easier to deal with as far as scheduling goes. If we have to go to Plan C, I may be calling on some of you, sweet friends, to watch Jocelyn (and maybe Robbie, though I'll probably just bring him with me in the beginning) during those infusions.
And Plan D is weaning Robbie earlier than planned so we can have some more treatment options. I hope it doesn't come to that. It's not just about the benefits of nursing, though that's part of it; I just really love nursing. I love the bond with the baby. I love being amazed by God's design for natural nourishment. I love being able to be a little lazy (i.e., not clean bottles, not think about how much formula to bring with me if we're going out, and so on). And, to be honest, after having my body essentially malfunction over the past couple of years, I love being able to take pride in my body's ability to do something right. I keep saying that we're prepared to wean earlier than his first birthday if it comes to that, but it'll be tough coming to terms with that when/if it does. So, for now, I'm thankful that we have a Plan A, B, and C first.
But, more than that, I'm thankful that God is in control. That He knows how this is going to turn out. That it'll turn out in accordance with His plan. That His plan is always what's best for me, even if that's not apparent in the present circumstances. That there's a difference between facts and truth. On that last note, I think I need to go re-read that post and be reminded of the truth God revealed to me in His Word when I was first diagnosed and everything was scary. 'Cause I'm sort of in that "everything is scary" place again. Good thing I know the guy who said, "I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world." (John 16:33)
Oh, and as a random side note, last night I scheduled 21 blog posts to go up between now and next Monday. New baby = lots of pictures = lots of posts! So enjoy those, including the batch you got today!