The Infertility Appointment.

I have been delaying to write an update for a while, because I have been hoping it will be an "I'm pregnant!" update instead of the infertility appointment update. However, after 7 months of unsuccessful trying I decided it was time to investigate things further. My anxiety about keeping my JRA under control, on less than optimal systemic medications has continued, and was recently exacerbated after my pharmacy gave me the wrong dose of Enbrel,causing a brief Uveitis flare. Fortunately, everything is back under control and I am even more anxious to get pregnant quickly.

This leads me to yesterday's appointment at the Center for Infertility and Reproductive Surgery. I have been to hundreds of doctors appointments in my lifetime but I was more anxious about this one then many of my previous appointments. Infertility is certainly out of my comfort zone of medical knowledge and experience. Send me to an ophthalmologist or rheumatologist any day but I had no idea what to expect at this appointment. Infertility is usually managed by a reproductive endocrinologist (RE), a new specialist to add to my list! The RE we met with was very thorough and informative. She agreed with my concerns to want to become pregnant quickly and my hesitation to wait the recommended year of trying to conceive before seeking out fertility treatment. She suggested a full-blood work up, semen analysis and to schedule a hysterosalpingogram, or HSG, at my next cycle. She then discussed that if nothing is found wrong, it will be a little tricky have insurance approve any treatments before a year of unsuccessful trying, but we can cross that bridge when the time comes.



I left feeling slightly relieved that we had a plan in motion and were no longer just waiting for it to happen. Trying to conceive while having JRA is very emotionally stressful. It is very hard for me to not think about the "what if's?" What if some of my medications make it harder to get pregnant? What if having JRA for 30 years somehow impacts my fertility? What if I flare and need medications that are contraindicated in pregnancy? What if this never happens? However, I am hopeful that we are heading in the right direction and will have answers one way or another soon...

The Trying To Conceive Chemistry Experiment

When trying to get pregnant, it is very easy to get sucked into the "TTC" world. Full of confusing acronyms, countless gadgets and endless stick peeing. I promised myself that I would not "be one of those women" whose whole life becomes focused on charting their temperatures and getting pregnant. However, this is a lot easier said then done. After two one unsuccessful cycle, I began turning the whole process into a chemistry experiment, anxious to quickly become pregnant while my JRA continues to be under control. I used more ovulation predictor strips then I care to confess to and dutifully charted every symptom that could possibly mean anything on my fertility app on my phone. However, this whole experience quickly takes the romance, spontaneity and fun out of the whole process. Having to drop everything and "get to it" as soon as the ovulation predictor strip turns positive, can quickly make having sex a chore. 

Of course having JRA, adds additional pressure to trying to conceive. I started this journey last January when I began to wean off my current medical treatment for 6 months and add safer medications to my regiment. Every minor ache and pain I have received since starting this process, has caused me to spiral into anxiety about whether this is a start of a flare that will further delay my family plans. Fortunately, I have been very lucky so far (knock on wood!) I have found some support in fellow RA bloggers stories about their journeys to parenthood as well as a facebook group for mothers with RA. The two week wait continues to seem agonizingly long as I continue on this journey but I am optimistic that will be an announcement soon...

The Lack of Control

I am a planner. I have a google calendar that controls my life. I have lists and post it notes everywhere. I send myself reminders to my phones and email, so I don't miss appointments. I am not sure if I would have always been like this or if having to constantly juggle 7 different doctors, therapy appointments and constantly changing medicines have forced me to become a planner. Whenever I am stressed or overwhelmed, I plan. By organizing my life and planning my future, I am able to relax and de-stress. However, the lack of control and inability to plan in my current situation is very hard for me! My husband just says, "relax, it will happen when it happens." But I can't! I know there are many parts of my life in the future that I won't be able to plan and I guess I will just have to "let it happen, when it happens.." Maybe tomorrow, I can make a plan to stop planning...

The Green Light

Since my last post, I got the green light from multiple doctors that my JRA was still being well controlled on the Enbrel since my medication change in January. Hooray! The 6 month waiting period after stopping my methotrexate was a lot more emotionally and psychologically challenging than I had anticipated. I was cautiously optimistic when I removed the final "barrier" (my IUD) in May. However, like all aspects of my life, there was a minor set-back when I was tested for immunity to various diseases and had to be re-vaccinated. Read more about that experience on my other blog here. Fortunately, it was resolved quickly and I still have "The Green Light."

A lot of women are anxious and excited to get pregnant quickly once they have started planning. However, given the fast that I have patiently waited 6 months while changing medicines and dealt with increased pain during that period, I am even more impatient then usual! Luckily, there are apps for that! After a few minor set-backs including cutting my hand pretty severely, I was pretty anxious to start trying. I downloaded and uninstalled a ton of phone apps to help track my cycle (considering I hadn't had a period in over 4 years, it was pretty much a shot in the dark). I finally settled on the Ovia fertility application. It is organized, clear, and had helpful articles that actually taught me new information. I also like that although there is a social, community aspect, it is pretty minor and easy to avoid (listening to other people's negative experiences just make me more stressed!)

I also bought about 50 ovulation test strips on amazon for about $10.00. There are no frills about them, they are basically litmus paper strips, but that is honestly what the $50.00 ovulation test kits are anyways, just in fancier packaging. I would highly recommending going this route.

And that brings us just about up to date to where I am now! I will try to continually update as I go through this journey..

One More Checkpoint..

It has been almost five months since I started this journey to prepare myself to try to start a family. Five months and we haven't even started trying yet. Fortunately, I have one more doctors appointment to make sure my JRA is in check and then I will feel confident that my current treatment is working. I am of course anxious to begin trying to conceive because that journey could take months as well. However, I feel very fortunate that I have been able to make it this far with limited pain and disease activity (knock on wood!). Today I am going on a a much needed week vacation to the beach and the timing is perfect. It will mark the end of my weaning off medication period and when I return I will be beginning the next phase of my journey. I feel like the ocean is coincidentally symbolic of living with JRA. Having JRA can often feel like the ocean tides, rolling in and out in waves of aggressive flares or periods of calm, tranquility. I am excited to begin the next phase of my journey and excited about what's to come!

My Love/Hate Relationship

Most people with JRA have a love and hate relationship with Prednisone. These small innocent looking pills can work quickly and effectively to reduce joint pain and inflammation but have a slew of unpleasant, annoying side effects. Personally, the biggest and most severe side effect of Prednisone is that it can raise intraocular eye pressure after an extended period of time. I have been battling with glaucoma for the past 7 years as a result of my Uveitis eye disease, and always need to keep a watchful "eye" (pun intended!) on my eye pressures. However, on some occasions I have needed Prednisone to help bridge the gap as we were waiting for treatments to work or to just get over the hump of a flare. There was a period in college when I was on Prednisone for a few months and every time I look at pictures of myself from that period, I can immediately tell what my JRA disease activity was based on the "moon face" in my pictures, In fact this "moon face" became so common, that after having my wisdom teeth removed, some relatives thought my JRA was flaring and it was Prednisone causing my cartoon like swollen cheeks! My third least favorite side effect of Prednisone is the "munchies" or extreme increased appetite I get while taking it. I already constantly crave sweets and have been trying to cut back on processed foods and dairy as much as possible, I know this will be much more challenging when the munchies set in!

I bring all of this up because my knees have been slightly achier than usual the past few weeks. My rheumatologist suggested a short treatment of Prednisone to tie me over for the next month, with the hopes that the Enbrel will be in full effect by then. Personally, I am still in denial over the achiness of my knees and am hoping it is just the changing weather that is causing me pain. However, I understand that active disease is not good for my pre-pregnancy planning as well and Prednisone is one of the few medicines that has been studied and is generally safe during Pregnancy. Therefore I am going to give it one more week to see how my knees feel before diving into my love/hate relationship with Prednisone once more.

That Familiar Ache

After 27 years with JRA, you become very in-tuned with different types of pain and what they may mean. The achy, sore pain after overdoing it. The throbbing, hot pain of a flare up. The popping, cracking, locking pain of degenerative knee changes. Up until now these pains have just been another part of my life and have not caused more concern then determining whether to take some advil or call my rheumatologist for a check-in.  However, when I woke up in the middle of the night on Sunday with my knees burning, it caused my mind to race. Is this the beginning of a flare? What are my medical options? Is this what I am going to feel like for the next year? Am I going to be able to get pregnant and deal with this without being able to take medicine for the pain? What happens if it takes a year to get pregnant and this is my life for the next two years?

Well some of these questions are legitimate, some are definitely an over-reaction of my tired, sore, exhausted state at 3 am. Fortunately, after a day of icing my knees and advil PM, I am feeling significantly better this morning and am once again optimistic for the potential ahead. Although, I do hope that I won't be stuck in this "limbo" period much longer, I have always felt that once I am pregnant, I will be able to deal with the pain and whatever comes my way. Because I know the light at the end of the tunnel, will be the best, most rewarding experience of my life. I need that goal in my near future to keep myself pushing forward. At this point, that goal is still around a curve at the ledge of mountain with no tunnel in sight...

The Decision To Have a Baby

I believe the decision to have a baby is a deeply personal and important decision that should be made between two loving partners. However, I'd like to share a little insight into some of my thoughts throughout this process.

I have always wanted to be a mother. I love babies and children. I always loved babysitting and often feel like a child at heart. In my career I treat babies and children as a pediatric occupational therapist and without talking, listening and laughing with my patients, I would not be able to get through my day.

I always felt like I would know when the time was right. When most people are deciding to start a family they would like to be married, have a steady job, steady finances and a house or home they are comfortable living in. I've been lucky that I have known my husband for 11 years, so finding the right partner was not a challenge. I have a steady career and stable living situation. However, I feel like having JRA trumps some of the other factors in deciding to have children. I feel like I don't have the luxury to wait until we have our perfect house. I can not be sure of what the future holds for me medically. Will I need a knee replacement? Will I need more eye surgery? All of these questions made me want to pursue having a family while I was healthy and made the other factors less of a priority.

I have had relatively quiet disease activity since I graduated college. I felt like this was my chance. JRA is an unpredictable disease and I wanted to have a child when I was the healthiest I could be. I know that it will not get easier to be pregnant or care for a child as I get older. Therefore after talking with all my medical providers, they all agreed that I was healthy and were confident and hopeful with my plan. I know it may be the most challenging journey I have experienced so far, but I am very excited to begin it!

Babies, Babies, Everywhere

I am not exaggerating when I say that there are babies all around me. I had a cousin deliver a baby in January, my brother just had his first baby last week, I have another cousin due in April and a third cousin due in May. There are literally babies all around me. Of course this is making it even more difficult to stop thinking about weaning off my medications and trying to get pregnant.

Next week will be mark the 3rd month of being off my previous medication regime. Most rheumatologists agree that you should wait 6 months since stopping methotrexate before trying to conceive in order to ensure that the medication is no longer lingering in your system. Therefore this means we are halfway there in terms of this "limbo" waiting period. This "limbo" period has been a lot harder for me mentally and emotionally then physically thus far. Besides the rogue knee pain, I have been feeling well. However, emotionally and mentally it is very trying. I am constantly anxious waiting for something to go wrong or for my body to flare. Not being able to trust your body your entire life makes it hard to trust it when time becomes precious. However, I feel that with each passing month and each good medical appointment, I am feeling more confident that this in fact can be done!

The Journey Begins

I recently embarked on the terrifying and exciting journey to start a family. For a woman without JRA, after some planning with your husband or loved one, you decide to start trying and just go for it. You may change your diet or get a physical exam but not much more planning is involved. However, for someone with JRA there is a lot of planning. My husband and I started the initial conversation with my rheumatologist in December and decided to beigin the process of stopping my current medication treatment (which was contraindicated in pregnancy) to try to find a medicine regime that would keep my JRA under control, but not be contraindicated during pregnancy. I started Enbrel in January with the hopes that it would keep my disease under control until I tried to get pregnant and then as a back up if I needed it during pregnancy. Enbrel is an old buddy of mine from when I was younger, so I am cautiously optimistic.

I am currently in frequent communication with my specialists and am being followed monthly by ophthalmologist (to monitor my uveitis). However despite everything going as planned, I feel like I am living in constant fear that my JRA will not be able to be controlled on just Enbrel. Every twinge I feel in my knee or floater in my eye instills great panic about an upcoming flare and what that may mean to my future planning.

Fortunately, I have been busy at work and am trying to just think about it day by day. I find it hard to believe it is already March. I do wish that this journey was not so complicated but I know it will be worth it in the end.