The Second Trimester

It’s hard to believe that at 35 weeks of pregnancy, I’m just getting around to writing about the second trimester. But such is life. Although the first trimester seemed to drag on, the second trimester seemed to fly by.

While the nausea of the first trimester thankfully retreated around week 14, the fatigue remained. I did get a few weeks of reprieve, but I didn’t take nearly enough advantage of it before the fatigue came back full force and even worse than before.

They say the second trimester is the “honeymoon” period and I guess in a way, it is. I wasn’t at the totally uncomfortable stage yet.

And while lupus and RA have continued to lay low, at around the end of second trimester, I started to feel that my immune system was starting to become overactive. Like it was trying to tell me that it had been accepting of this uninvited guest for seven-ish months, but not so much anymore. It felt like my nerve endings were sometimes on fire. And I kind of had that feeling of being tired and run down, almost coming down with something but never actually getting sick.

As far as symptoms in the second trimester, like I said, good old fatigue was back in full force, along with severe heartburn (thanks baby hair) and itching (more on that in another post; forthcoming).

As far as cravings, French fries continued, along with potato chips and popcorn. Plus protein. I’ve never been one to eat protein without a bun, but I often found myself going for straight protein (the plant-based kind, of course). Iced tea was the other thing that I majorly craved, and not just because it was summer.

Though there was nothing I wanted so bad that I woke my husband up in the middle of the night and in the most Veruca Salt-y way said “I want this, and I WANT IT NOW.” I’m sure he was relieved that there were never any middle of the night runs to the store. But we definitely have learned that our son’s carb addiction is no joke. I hope he’ll still want to eat potatoes when the time comes.

The only aversion I really experienced was to coffee still. But I anticipate that once the baby is here and I am sleep deprived, coffee will definitely be a staple in my life once again.

One thing we weren’t quite expecting was the frequency of appointments and the level of surveillance that would start in the second trimester and continue through the third trimester. Looking back, it makes sense given the high risk nature of this pregnancy, but we didn’t feel fully informed or prepared when it was sprung on us that we’d be seeing the high risk OB every other week until 30 weeks and then weekly after that, along with having fetal echocardiograms from the beginning of the second trimester every other week until 28 weeks and then a final one at 32 weeks.

For me, pregnancy has been harder than I expected. While my autoimmune stuff has been mostly quiet, my body pretty much hasn’t felt like my own the entire time.

The First Trimester

The first trimester is tough. No one tells you how hard it's going to be. While I’m lucky that lupus and RA have been quiet, the nausea and fatigue have been a lot. RA fatigue has nothing on pregnancy fatigue, in my opinion. 

And I keep telling my husband that while this whole pregnancy thing is harder than I expected it would be, I’m grateful, endlessly grateful. There were certainly times when I never thought I’d get here, even at the end of 2020, when we were trying and not succeeding. The disappointment I felt each month as my period came was really indescribable.

And given the medications I’ve been on in the past, and the fact that it wasn’t really until our consultation with the high risk specialist last summer that gave me hope, there was certainly a part of me that wondered if pregnancy would even be possible at all.

But then, almost inexplicably, there was no period. I had been five days late before, so it didn't really phase me. And I was having a lot of cramping, so I was assuming I would just get my period (like come on, already). No one tells you that all of the traditional PMS symptoms are also early pregnancy symptoms.  

And then, after being a week late, I realized I probably needed to take a test. I didn’t even get a chance to leave the bathroom, that’s how quick it changed. And when the test came back positive, I was shocked, and excited, and scared. Waiting for my husband to get home from work to tell him the news was torture. But finding out I was actually pregnant made me realize that my body, which has at times tried to evict its primary resident (me!), was now doing an even more important job. But I felt like I had less control than ever. I’ve felt like my body is truly not my own.

Even after the positive pregnancy test, I didn’t really believe it. Going into my confirmation appointment, I just kept hoping that the pregnancy test at the doctor’s office came back positive (it did!). And then I hoped that my HCG would be higher than 5 (it was 140,000!). Going into the first ultrasound, I was like “please, please let there actually be a baby in there.” I don’t know if it’s Jewish superstition or first time mom anxiety or chronic illness anxiety or a combination, but it’s been a hard mix of wanting to be excited while dealing with my feelings of not being able to trust my own body.

It’s weird to go from having no control over your body without agreeing or consenting to that due to illness, to signing up for that for nine months. But it’s different. As my OB told me, “You’re not ill, you’re pregnant.” Though I want to say “then why are we medicalizing the heck out of this experience?” But I know that the end goal is a healthy baby and a healthy me, so if that means a million and one doctor’s appointments, I’ll take it.

In the first trimester, I lost five pounds, which was slightly distressing to me. But my doctor doesn’t seem too concerned. And I’m sure that as the nausea retreats, I’ll start eating more and will make up for lost pounds.

I knew going in that during pregnancy, I wanted to maintain the vegan lifestyle that I’ve been living for about two and a half years (I was vegetarian for 15 years prior to going vegan). And I was upfront with both my regular OB and the high risk OB about that before I was even pregnant. Don’t try to convince me otherwise.

It’s weird, though, I have been craving protein – thankfully not of the animal variety. But I can literally say I’ve never craved protein in my whole life prior to being pregnant.

Aside from protein, I’ve craved French fries, which is weird because I’m not really a French fry person. Early on I also craved smoothies because it was about all I could stomach. I’ve also had a propensity for avocados and clementines, not so much in the last few weeks, but definitely for several weeks earlier on. Thankfully, none of the cravings have been so bad that I’ve woken my husband up in the middle of the night and been like “I need French fries now.”

As far as symptoms go, I’ve had fatigue, nausea, acne, and been freezing cold all the time, even when it’s 85 degrees outside.

All I can say is that so far this experience has been wild. It has been an adventure already and we’ve only seen our little bean once. I’m starting high risk appointments every other week, so I’m sure we will be seeing a lot more of him or her. And I hope that things stay calm and uneventful. 

I’m Pregnant. We’re Pregnant. We’re Having a Baby.

Well, that’s the big announcement. My husband and I are expecting. 

We’re so, so grateful. There was a large part of my 20s where I couldn’t even get a doctor to entertain what it would look like for me to get pregnant. And now, at 35, here I am and here we are. 

I’ll have more to say in a post devoted to the first trimester, including when and how we found out, etc.

Medication Meltdown (RD Blog Week #1)

For the past five years, I have been on a combination of medications that has worked, been the most consistent, and lasted for the longest period of time since I was diagnosed with lupus and RA. I can’t explain how grateful I am for that, especially given that it is so much more difficult to find treatments that work, having multiple autoimmune diseases, and trying to find treatment regimens that don’t help one disease at the expense of the other.

But that is all about to change…

When I saw my rheumatologist a few weeks ago, he informed me that Quinacrine is no longer being manufactured due to an import stop by the Food and Drug Administration. As a result, I will no longer be able to take Quinacrine. The only other option is Hydroxychloroquine/Plaquenil, which didn’t really work for me and caused chronically elevated liver enzymes.

My rheumatologist stated that since I hadn’t been on Hydroxychloroquine/Plaquenil with Imuran before, that maybe in combination, it will work better than it did before. But then in the same conversation, my rheumatologist told me that I likely won’t be able to stay on Imuran when I want to get pregnant.

I talked to my gynecologist to confirm this, and he stated that Imuran is a Class D medication, meaning that it has been deemed not safe to use during pregnancy.

So with the Quinacrine shortage and Imuran being out for pregnancy, where does that leave me? Everything is being upended.

It feels like several years of being sick and trying to get a diagnosis, six years of trying to find a treatment that worked, and another five years of being on a treatment that worked, is going up in smoke in a matter of months. It feels like a lot of hard work for nothing.

I’ve struggled through medications working at first and then suddenly not working. I’ve dealt with unpleasant side effects that I was willing to put up with in the name of feeling okay. I’ve suffered through medications that have helped my RA only to make my lupus flare, and medications that have helped my lupus only to make my RA flare. I’ve handled medications not working at all.

And of course, this would all obviously be somewhat easier if it weren’t for the fact that I have multiple autoimmune diseases to contend with.

I know that this is a struggle that most of us with these illnesses share. But honestly, nearly 12 years after my diagnoses, I don’t really feel like the medical community knows more now than they did then.

Quinacrine is off the table. No one has a solution for that other than to take a medication that previously hadn’t worked or to suffer through without anything.

And Imuran is soon to be off the table due to wanting to get pregnant. My gynecologist said that if I can live without Imuran, I definitely should. I’m not going to risk taking it.

So I asked my gynecologist if I should prepare for the longest nine months of my life. His answer? Yes.

So there you have it. I’m back in the same place I was 12 years ago. Back then, though, no one would talk to me about pregnancy because it was “just hypothetical”. Now, at least they’re willing to have the pregnancy conversation, but I don’t really like what I’m hearing.

I don’t know what my life will be like without these medications. I can barely go a day without them before my immune system goes into overdrive. So we’ll just have to wait and see.

“Arthritis, Pregnancy, and the Path to Parenthood”

I have had conversations recently with a few women my age who have RA.  Our experiences in terms of pregnancy counseling have largely been the same.  We became ill at a time in our lives when having children really wasn’t seriously on the radar yet – young twentysomethings who had a lot of other plans before settling down and having kids.

And unlike young women who receive cancer diagnoses and are immediately told to freeze their eggs before they start treatment, if they are planning to have kids, those of us with RA – despite being on medications often times that are just as toxic – are not told to do anything similar, or anything at all, in regards to our future fertility and children.

There are examples of women with lupus getting pregnant that I can think of, but largely none that I can really think of with RA.

Clearly there’s a gap here that needs to be filled.  And that gap is filled by the book “Arthritis, Pregnancy, and the Path to Parenthood” by Suzie Edward May.

I’ve decided to split this discussion into two separate posts – one about my own feelings and experiences in this regard and one specifically about the book – because I did not want my personal experiences to overshadow the thoughts, opinions, and experiences of Suzie, who is a woman with RA who has had two successful pregnancies.

Anyway, healthy moms can read about pregnancy as it happens.

But for chronically ill moms, especially those with arthritis, we can’t read about it as it happens because there is so much that goes into pregnancy BEFORE actually becoming pregnant.

And so many books on pregnancy, I would imagine, are written assuming that the mother is healthy, and doesn’t take into account the unique situations of those who are not (and those who are not yet pregnant).

While we can’t read about our illnesses before we have them, we can read about things that we have slightly more control over, like the timing of a pregnancy, and everything that goes into it. 

I have been frustrated because my rheumatologist largely refuses to talk about pregnancy until it is no longer “hypothetical.”  Well doctor, if pregnancy is in my five year plan, is it really “hypothetical” anymore?

I think not.

That’s why, when I find a new rheumatologist when I move at the end of this summer, this is one of the first topics I want to discuss.

I have wondered for awhile whether the goal is to be on meds, get as healthy as possible, and then get off of them to get pregnant, or simply work to get off meds to get pregnant.  Maybe these are different sides of the same coin, but because I’m not sure, I want and need answers.

I think that this silence on the part of doctors is particularly telling.  And I think it can have very negative consequences.  As I said earlier, to this point, I can’t really think of many examples of RA and pregnancy.  But there are examples of women with lupus having babies, such as Sara Gorman and Christine Miserandino, and others in the chronic illness blogging community, such as Laurie Edwards and Kerri Morrone Sparling, who chronicled their experiences with chronic illness and pregnancy.  These are great examples.  But when you don’t see or hear about women with RA getting pregnant, you might think it’s not possible at all.  Or that it’s something that doctors discourage.  If it’s really a safety issue, that’s one thing. But if it’s lack of knowledge or judgment, that’s another, and it’s not right.

Pretty much all I knew about RA and pregnancy prior to reading Suzie’s book is that I will have to basically be off of all meds other than steroids – and will have to be off of meds, depending on the type, for between three months and a year before trying to conceive – and that I will add a high-risk obstetrician to my medical team.  That’s it.  And in reality, that is not it.  There is so much more to know and think about, but my knowledge is lacking and so is my rheumatologist’s.

For instance, it’s been hard for me to even fathom going off of meds.  How will I function without them?  “Arthritis, Pregnancy, and the Path to Parenthood” answers this question and many more with a combination of personal experience and interviews with others with arthritis.

Stay tuned for my interview with Suzie Edward May, author of “Arthritis, Pregnancy, and the Path to Parenthood.”