So, it turns out, the astrologer was right

I've alluded to some pretty severe physical problems that I've had since the boys were born, but it wasn't until early July that I knew why: I now have Rheumatoid Arthritis. It turns out that for a person like me, having my immune system suppressed during pregnancy had the effect of my body manifesting yet another auto immune disorder.

The astrologer reference is this:

About two weeks before I started the cycle that resulted in my boys, I was at a local holistic pharmacy and there were lots of people selling and sampling lots of things. One person was a health astrologer, and she disclosed that she'd also struggled with infertility, and decided not to have children. She said that in my chart it was pretty clear that if I did get pregnant that I would have some long lasting health effects. I was a bit shocked, but given how she described her own IF aftermath, I thought perhaps this was just sour grapes. Ya, not so much. I don't usually put much stock in astrology, but I must admit, she got it right.

About the time that the boys both came home, aprox 3 months after their birth, I started to have excruciating pain in my hands (as well as my shoulders and elbows, but it turns out that was other crap). My fingers would swell and get stiff, as would my feet. I just chalked it up to fibromyalgia and the sleep deprivation and the normal stress of breastfeeding, and over using my hands for expressing during pumping.  Turns out, that was the onset of the RA.  It starts in the hands and feet. It is at its worst when you are at rest, unlike regular arthritis which gets worse the more you use the joint.

I suffered and beat myself up, and let it be said, took care of my babies, with some pretty messed up hands, for quite a while. It wasn't until late June that I decided to go see my Rhumatologist and see if there was anything I could be doing for my Fibro that would help with the hand and foot pain (I thought maybe I could take an antidepressant...that is the typical treatment, or maybe a course of prednisone). He looked at my swollen and crabbed fingers and said "Well, sometimes pregnancy tips off Rheumatoid Arthritis, lets do the blood tests to be sure." So we did, and three days later, I had my answer. Ugh.

The one downside to the drugs is that they are not compatible with breastfeeding. My doctor felt comfortable with me breastfeeding through August, but didn't want to wait much longer to start the meds--my joints were at risk. The prednisone controls the pain to some degree, but doesn't suppress the immune system. I pushed through July, but near the end it was clear to me that I was in more pain than was healthy. And the boys were going through a bitey phase and I just said "buh bye" to breastfeeding. Oddly enough, my last nursing session was on my 9th wedding anniversary. It was with Ace, and for once, he was quite sleepy and contented during the nursing session. It was a sweet note to end on. I filmed a last nursing message with each of the boys.  Within about a week I found myself really energized, and physically feeling a lot better than I had in months. Breastfeeding was exhausting, and given the double whammy of fibro and RA, I don't have a huge reserve.  

I'd been freezing my pumped milk for months, so we actually had enough frozen breast milk to give them 6+ oz's a day for two months. The last breast milk bottle was last week, and I was surprised that that was the moment that felt like 'weaning'. I felt sad. Washing the bottle, feeling the extra slipperiness of the fat on the bottle parts. Knowing I had made this, and that I had nourished my babies, however partially at the end, was intense for me.

The standard treatment is to start with an old chemo drug called Methotre.xate, and if that doesn't control the symptoms, then to add en.brel or hum.ira.  Right now, I'm on the Metho.trexate and 15 mg's of prednisone to control my pain, and swelling. My dose is being raised this weekend (you take it once a week). I'm close to having my pain controlled, but there are still some very sore days and intermittent swellings. One of the distinct advantages of having gone through IVF is that I'm not freaked out by giving myself the injections of hu.mira or en.brel in the belly. Ya gotta take your advantages where you can, eh?

This felt like a huge slam, but it was also a relief to know that part of why I was such a mess after the boys came home was that I was coming down with another auto immune disorder. Oy. I'm working on forgiving myself for being such a mess. Without knowing what was going on, I really beat myself up. Left a few pretty deep whacks...

The reason it hit when it did is that their immune cells died off in my body, and when I was left with my own immune system, it went on the attack. Ever since I had mono when I was 12, my immune system has suffered with an inordinate sense of guilt...it let me down, and now it attacks with vigor, whether its my thyroid, my pigment or my joints. Oy. I wish I could tell it to forgive itself!

I'm starting back to work, very part time, in the next two weeks, and I'm turning 41 next saturday.  I'm starting to feel like I can handle this twin motherhood gig, but just barely, and that is HUGE. I have really really struggled with my confidence as a mother.  

However, the boys LOVE me! They are so attached. See me as their secure base, and want me to hold them when they get tired, or get scared or get a booboo. It's really starting to get fun! I'm getting more involved with the twins club in my area, and took the boys on my first solo outing on Tuesday. It was very edifying.

I'm also starting to think about re-tackling that paper I'm writing about infertility, and really hoping to get it published in the next couple of years. And ya know what? I never wrote their birth story. I need to do that. The 'anniversary' AKA their birthday, is coming up in a 2 months, and I'm feeling a lot of what I didn't feel then--to much to take at the time.

I'm also going to give myself permission to use this space again. I think I stayed away because I felt like I should be doing something more practical, but in reality I've been quite isolated. Sometimes those puritan habits get you in trouble (oh yes, and in the intervening months, my father has secured my "descendant of the Mayflower" status, so I really get to claim being a puritan, except my ancestors were actually after land and money, and got fined for fornication just about as often as they did for not going to church...)

Let me see if I can find some pictures to show you of my little darlings:

Ace is almost 21 lbs and Juice is closing in on 19. They are both long, but A is long and solid and J is long and slim. Both are ADORABLE!

This is Juice, getting a munch from papa.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

And this is Ace trying to get the hang of eating solid food. That's a rice cracker stuck to his forehead.

 

 

 

 

 

 

 

 

 

 

 

 

 

So long for now!

Comments

[Beth]

Awww... the boys are beautiful. And I suspect that Ace was just saving that cracker for later. My little one hides cheerios in her shirt and always seems to find them a couple of hours later to snack on.

Sorry to hear about the RA, but glad to know that the pain is mostly under control. Good luck with all your ambitious plans! I want to read your paper, so be sure to post when & where it gets published once you've had the chance to write.

Be well!

[Beth]

p.s.
Happy Birthday!!

[a]

The boys are adorable!

Sorry to hear about the RA. It's a weird old disease. My dad had it, and I have the marker in my system - which my doctor thought was the cause of my miscarriages. My OB and high-risk OB that I saw when I was pregnant both implied that I might someday develop lupus (or RA or something else, I suppose), but so far, so good. I think it's very depressing that 20 years after my dad died, the treatment for RA has not really changed at all. Sigh.

Hope you remain pain free, and with the symptoms under control.

[Sara]

First, let me say that A and J are stunningly beautiful. You must be so delighted with them. I could stare at those photos for hours.

On a less happy note, I'm really sorry to hear about the RA. It's a wicked disease, and I'm sorry that you have that to deal with on top of everything else. I hope that at some point, your body decides to lighten up on you. Until then, I hope that the meds keep working well.

I'm happy to hear that you'll be posting again. I've missed you! But then again, I haven't posted since May, so I have no cause to complain ;-)

[Rachel]

Ugh. So sorry to hear you're dealing with this. Not exactly fun when you have twins to chase.