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Journal entry by Chelsea Stanley

I spent a few hours in the ER last night. I woke up with vomiting and diarrhea at 1:00 and then had intense pelvic pain that wouldn’t subside so Dan brought me in. By the time I got there, the pain had subsided but I had started bleeding vaginally. We think that my body must have been reacting to a mid-cycle progesterone spike. Typically, my major reactions come right before my period and I might have minor symptoms mid-cycle, but this was the first time I’ve had a stronger reaction at that time in my cycle.

You can imagine that this is all a little confusing and scary. Up until two weeks ago, I had not had any major reactions for close to eight months, and we were under the impression that the medicine was working. Now, we’re not sure what’s going on or what comes next.

As I was laying on the hospital bed watching my vitals blink on the screen last night, I was once again reminded that my life is not my own. But that’s not as scary as it sounds. Because the one to whom it belongs—the one who gives, takes, and sustains life—is good and just and kind. We can trust him.

Signing off with a verse from one of my favorite hymns...

“Never a trial that He is not there,
Never a burden that He doth not bear;
Never a sorrow that He doth not share,
Moment by moment, I’m under His care.”

-Daniel Whittle, “Moment by Moment”

Thank you for your love and prayers.

💜 Chelsea
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Journal entry by Chelsea Stanley

Our family has fallen prey to the nasty stomach bug that is going around. Last night was my turn.

As if the stomach bug itself wasn’t enough, my body reacted as it does when I have anaphylactic reactions—intense itching, hives, rashes, and some redness and swelling in my lips. Thankfully, Benadryl calmed everything down enough for me to get back to sleep, but I was seriously considering giving myself an epipen injection and calling the paramedics for a few scary minutes there.

I called my immunologist who said that he’s not surprised. Apparently anything that causes my immune system to go into overdrive (like a virus) can cause me to have an anaphylactic reaction. In the future, I’ll need to look out for difficulty breathing, swollen lips, and low blood pressure. If any of those things occur, I’ll need an epi shot and an ER visit.

I’d be lying if I said that I’m not discouraged. Just when I was starting to feel safe, this journey has taken another twist. It just goes to show that the only true safety I have is in Christ. I’m all the more grateful for that hope today.

Thank you all for your love and support. Please do pray for our family as four of us have been wiped out by this awful sickness. Dan wins the prize for last man standing!

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Journal entry by Chelsea Stanley

Dan and I met with my doctor last night. It was the first time I've seen him since I was tested last month.

We learned quite a bit. For one, there's a lot of debate as to whether or not what I have is an autoimmune disease. In the more recent publications, there seems to be a push to reclassify it as "progesterone hypersensitivity." That's the term my doctor prefers as well.

His theory is that I developed an allergy to the synthetic progesterone in the birth control pills I took for the first year of our marriage. He thinks that my pregnancy with Michael triggered something in my body causing it to mistake my biological progesterone for the synthetic one it was originally allergic to. Barring a miracle, I will most likely be dealing with this for the rest of my life. 

If we decide that we want to try for another baby, we can do so. It's risky and difficult and would involve a lot of strategy and medication, but it can be done with the help of a team of doctors. 

There are three treatment options:

1) Remove my ovaries and uterus. This is not a viable option at 30 years old, but it could be an option down the road if the symptoms get worse. 

2) Continue to try to manage my symptoms with antihistamines. While others might balk at the amount of pills I'm taking, he said it's actually a relatively mild regimen. If I need stronger medication down the road, we have lots of options available. Also, antihistamines are well-researched and quite safe overall. 

3) Attempt desensitization. In this case, I would take progesterone orally or via injection in an attempt to desensitize my body to progesterone. Research shows anywhere from a 40-70% success rate. I would be highly medicated during the desensitization process, but there is a risk that I'd go into anaphylactic shock. Also, if I went this route, I would permanently be on birth control following the desensitization process. Even 48 hours off the pill could send me into anaphylaxis. However, IF it worked, I would theoretically not have any symptoms as long as I continued on the pill. 

As you can imagine, it's a lot to soak in. The chronic nature of this is hard to digest. We meet again with him next month to tell him what I've decided to do. In the meantime, I'm on my usual meds.

How can you pray for us?

1) Pray for wisdom in deciding how to move forward.
2) Pray that Dan and I would hold fast to Christ and to each other.
3) Pray that the medication will continue to keep my symptoms at bay.
4) Pray that God would use this trial to draw me and others closer to himself. 
5) Pray for miraculous healing if it's part of God's will for me.

 Thank you for your love and support. We are grateful. 

Journal entry by Chelsea Stanley

“Congratulations, you’re allergic to progesterone.”

Sobering words from my doctor tonight after three hours of testing.

You probably have questions. We do too. I have a follow-up appointment on November 2 to discuss my treatment plan—though, my doctor is hoping to get me in sooner with a cancellation. I can tell you that the only “cure” is ovary removal—an option that we all want to avoid at all costs. Other options include desensitization and medicine to help control the symptoms. We don’t really want to speculate anything until we sit down with him and hear what he has to say.

This an extremely rare condition that most doctors have never seen—mine included! From my understanding, there are less than 250 documented cases. As sympathetic as he tried to be, I could tell that my doctor was excited to have such a challenging case 🤓

How are we doing? We’re sad. It’s one thing to be told that you’re allergic to something outside your body. It’s another thing entirely to be told that you are allergic to your very self. There are implications I won’t get into on Facebook, but one of the hardest to swallow is that we probably won’t be able to have more biological children. Even if we wanted to stop at three (we weren’t sure), it’s tough to have that choice stripped away.

While we are sad, we are also incredibly grateful. Looking back at how we came to this diagnosis—it’s really inexplicable aside from God’s providence. I have met women who searched for an answer for YEARS, and I got mine in just a few short months. From an obscure article I found on the internet, to a chance encounter with a random stranger on Facebook, to a kind doctor from New York who took the time out of his busy schedule to talk to a woman who wasn’t his patient, to an allergist referral from a friend, to a doctor who was actually willing to listen...God’s hand in this has been completely undeniable. I don’t know why I’m walking this path, but I do know that God works all things together for our good and his glory. He is the upholder of my life, and I can trust him.

A few people have asked how I can “stay so positive.” Friends, it’s only because I have the hope of Jesus. I don’t despair because I know that my very greatest need has been taken care of. Christ died for my sins, and now I’m at peace with God. My body may be broken, but my soul is well...and one day soon, God will heal me completely as I enter into eternity with him.

Journal entry by Chelsea Stanley

The date is set--I'll be tested for a progesterone allergy on Thursday, October 5th at my doctor's office.



If you're keeping track, this means that I will need to go off all of my medication starting Saturday, September 30. I do have emergency Benadryl, prednisone, and epinephrine if needed (these can be in my system up until the night before), but I will not be able to take my normal antihistamines for five days which leaves me much more susceptible to another anaphylactic reaction.



A few people have asked what I'm "hoping for," and to be honest, I'm not really sure. It would be nice to have a definitive answer, but progesterone hypersensitivity is no small diagnosis. There is very little research in terms of treatment and it could have a significant impact on my quality of life.



I do take comfort in knowing that God knows my frame. He already knows what the result will be and he has a plan for my body and soul. He is a kind and good father no matter the outcome. I can trust him with my diagnosis and with my life.



As always, thanks for your prayers and support. We are grateful.

Journal entry by Chelsea Stanley

Friends, thank you for your prayers! I received a call from my doctor today, and there is a pharmacy in Roselle, Illinois that will compound the testing agent for us. This is huge--I've spoken to other women who have had to travel to Mayo, NYC, or Cincinnati for testing. It's too late to test this month, but we are hoping to be able to test NEXT month.

Journal entry by Chelsea Stanley

I had a follow-up appointment with my immunologist last week and was pleasantly surprised when he said he's ready to do a progesterone test.



The only caveat? We have to locate some progesterone. It's not something that doctors normally test for, so there aren't a whole lot of test kits lying around.



Once he locates it, we will time the test with the low-progesterone part of my cycle, and I'll have to go off my meds for five days prior to testing.



If the test is positive, we will look into progesterone desensitization. Because it's such a rare disease, there's very little research--in fact, my doctor thinks he's read every paper ever written on it! The most recent study showed that desensitization worked in 44% of women. For the other 56%, it either didn't work or it caused them to have anaphylactic episodes. Needless to say, I would need to be carefully monitored.



I also have the option of staying on medication long term. Some women have their ovaries removed, but this would be an absolute last resort because of my age.



If the test comes back negative, he plans to test me at a later date for the more normal allergens. His theory is that if I'm not actually reacting to the progesterone itself, the higher progesterone levels may cause my body to be more susceptible to another allergy.



We feel encouraged that we're hopefully one step closer to a diagnosis. If you're inclined, please pray for the following:



1) That God would continue to protect me from life-threatening reactions.

2) That we would be able to locate a progesterone test!

3) That God would help me wean off my meds and would sustain me during the five day prep period.

4) Wisdom for my doctor and for us as we weigh our options.

5) That I would have peace and trust God for the next steps.



Thank you for your love and support! We are so grateful for you.

Journal entry by Chelsea Stanley

The past month has been relatively uneventful--a few mild symptoms here and there, but nothing life-threatening.

The medication I was on, however, had some pretty rough side effects. I'm usually one to pop up in the morning, ready to start my day. With this prescription, though, Dan literally had to shake me out of slumber, and I was struggling to care for our kids in the morning because I was so tired.

On top of the fatigue, I rapidly gained weight. It turns out that doctors often prescribe this med for patients with anorexia because it causes a ravenous appetite and quick weight gain (like 10 lbs in a month)! I was in a really good place with my weight and body image before all this happened, so this has been a real blow to my heart.

Thankfully, my doctor allowed to me to switch medications this week. Within 24 hours ,we saw a major shift in my energy level. I won't have an increased appetite with this medication either, but I'll still need to work on losing the weight I gained on the previous meds.

I also learned that it will be AT LEAST another few months before we can do any testing. My doctor still doesn't feel comfortable taking me off my medication to test for possible causes. He believes that the medications are keeping me alive right now and wants my body to have a chance to recover from weaning Michael.

How can you pray?

1. Pray for continued protection as we wait for testing.

2. Pray that I would not be discouraged by my weight gain and that I won't let it affect my fellowship with others. Right now, I'm embarrassed to go anywhere for fear that someone might ask if I'm pregnant. Silly, I know, but a very real struggle.

3. Pray for wisdom for my doctor as he seeks a diagnosis.

Thanks for your love and care!

Journal entry by Chelsea Stanley

"Wait for the LORD; be strong, and let your heart take courage; wait for the LORD!" - Psalm 27:14

I texted an update to my friend yesterday, and she responded, "This is certainly an exercise in patience."

I hadn't thought about it that way, but I guess she's right.

I met with my allergist yesterday after having another reaction Tuesday morning. In short, he thinks there's still a possibility that my hormones are just out of whack from weaning Michael and is hopeful that they'll settle down on their own given time. In the meantime, he has increased my nighttime dosage in hopes of warding off any more reactions, and we have come up with emergency protocols if I do continue to have reactions. We are waiting on test results from Tuesday which will give us a better idea of whether my allergies are environmental (food, dust, etc.) and the hormones are heightening reactions or I have a legitimate hormone allergy. 

Needless to say, I've gone down the road of fear and anxiety before, and it just leads to dark places. So today, I'm choosing to wait on the LORD--to be strong and let my heart take courage with God's help.


Journal entry by Chelsea Stanley

The past two months have been rather uneventful. I went through two cycles with just one very mild case of hives. We were pretty optimistic that the combination of medication and weaning had brought things to a halt.

Unfortunately, I woke up this morning to another reaction nine days into my cycle. Dan was home, so we were able to monitor my symptoms closely instead of calling an ambulance right away, and I'm feeling fine now.

Thankfully, I have an appointment already scheduled with my allergist for Thursday morning. He also sent me to have blood work done today so he has a better idea of what's happening. I'll update everyone when we have a better idea of what the next steps will be.

Thanks for your prayers and love. 

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Journal entry by Chelsea Stanley

I've gone back and forth about whether or not I should share my story publicly. On the one hand, I'm dealing with a "female" issue that isn't the type of thing you want to shout from the rooftops. On the other hand, an online journal is a really convenient way to share information with our loved ones, and I have personally benefitted from others who have shared their stories online (as you'll see in a bit). 

Over the past few weeks, I have been asking God to use this trial to glorify himself. I share my journey here with full anticipation that he will use it to encourage both you and me. 

HOW IT ALL BEGAN

Since November, I (Chelsea) have been experiencing monthly allergic reactions that appear to correspond with the end of my menstrual cycle. The first few episodes were "mild," starting out with vomiting/diarrhea. I brought it up to my OB, and he said not to worry, it was probably just a strong reaction to my hormones. In March, I experienced those same symptoms with a side of intense itching, tingling fingers and mouth, and hives. Again, I reached out to my OB who thought my body was just responding strongly to hormones. 

I had another similar reaction on April 5, and my anaphylactic reaction occurred at 3 a.m. on April 10. I woke up with my palms itching profusely. Feeling sick, I rushed to the bathroom and within seconds, I noticed my feet and hands swelling and tingling in my fingers and mouth. When I looked in the mirror and saw that my lips were two to three times the usual size, I woke Dan. I started having difficulty swallowing, so he called the paramedics right away. When they arrived, I was quite dizzy. I later found out that my blood pressure went dangerously low, causing me to completely lose my vision at one point. They were able to stabilize me with epinephrine and antihistamines, and I was released a few hours later with instructions to follow up with an allergist.

THE FOLLOW-UP

I saw the allergist a few days later, and she was completely stumped. She had me tested for an almond allergy, even though I've had almond milk every day for the past eight months. I asked her to test for a progesterone allergy, but she said it couldn't be done (now I know this to be untrue). She also instructed me to keep a food diary and follow up with her in a month. When she shook my hand and said she hoped it was just a fluke, I knew I needed to find another allergist.

In the meantime, I followed up with my primary care doctor (well, his physician's assistant). She ran more extensive blood work, and the only concern was my white blood cell count which kept rising over a period of a few days (probably due to the medications I was on). She agreed that it seemed to be hormone related and recommended I see another allergist. While she didn't have answers, I felt like I had a medical advocate in her. She assured me that we'd keep pushing to find answers together.

FACEBOOK--GOD'S GOOD GIFT

Desperate for a new allergist/immunologist, I turned to my trusted Facebook friends. Sure enough, a friend from my political days gave me the name of her allergist who she called "a genius." She said that he often treats the patients that stump other doctors--and that's exactly what I need! I called his office and was able to get an appointment for April 27. The receptionist said it was a "small miracle" that I was able to get in so soon. Normally, the wait is much longer.

As I waited for the appointment, I did a lot of research on my own--looking for any articles or personal testimonials that sounded remotely close to what I was experiencing. All my research kept pointing back to one condition in particular--Autoimmune Progesterone Dermatitis (and more specifically, Autoimmune Progesterone Anaphylaxis)-- an extremely rare condition where you're essentially allergic to your own progesterone. 

There are very few documented cases of AIPD, and even fewer of AIPA. But as I was reading up on the autoimmune disease, I came across a Facebook support group for women who either have been diagnosed with this condition or who suspect they have it. Most women present with skin lesions right before their period. A few had experienced gastrointestinal issues. One woman had experienced an anaphylactic reaction. I found her on Facebook and reached out.

As I read her story, I felt so vindicated. See?! I'm not crazy! I also felt very encouraged as I read about how she had travelled to see a doctor in New York who had been successfully treating her for a year. When I read his name, I realized that I had seen it someplace else before--in the very first article I ever read about Autoimmune Progesterone Dermatitis.

Those who know me well know that I HATE making phone calls. I find phone conversations terribly awkward and have serious phonaphobia. But I decided to take a leap of faith and called this doctor to see if he might have a colleague who could treat me in Chicago. I left a message with a very rude nurse who said I "shouldn't expect to hear back" since I wasn't a "real patient."

Friends, I kid you not...not sixty second later, my phone rang. It was Dr. Badawy himself. He couldn't believe I had even heard of the disease, let alone found him. He talked to me for twenty minutes and said that it sounds like I have a classic case of Autoimmune Progesterone Anaphylaxis. He graciously offered to take me on as a patient or to speak with my medical team and walk them through a treatment plan. I was blown away by his kindness.

I shared the conversation and the article with my OB who was understandably leery of such a rare diagnosis. He had never heard of it, plus the journal article was from a foreign journal that isn't normally recognized among American doctors, and the only obvious cure would be to put me into early menopause with chemicals or surgery. He was very sympathetic and encouraged me to proceed with the allergist, assuring me that if the allergist didn't have an answer, he would see me and keep an open mind. 

That night, I did some more digging and one of the ladies from the Facebook group pointed me to a case study of 24 women with AIPD/AIPA conducted by Brigham and Women's Hospital (Boston, MA) and published in the Journal of American Academy of Allergists and Immunologists. I sent it over to my OB in case he wanted to take a look. After reading it, he thought it could be a possibility and felt encouraged by the progesterone desensitization treatment they had developed. He suggested I mention it to the allergist at my appointment.

THE ALLERGIST

April 27 came, and I was a nervous wreck. I printed out all sorts of information for the doctor to review--my blood test results, my food diary, a timeline of all my symptoms, and the case study from Brigham and Women's Hospital. The entire drive there, I practiced what I was going to say. My hands were literally shaking as I walked into the office.

When I met him, though, my fears were relieved. I was initially worried that I would feel rushed and miss out on communicating important information. Instead, he set the pace at a steady stroll. He listened intently, asked good questions, and explained everything along the way. He was extremely knowledgeable and had one of the best bedside manners I have ever experienced. He even spent ten minutes showing me how to use an epi-pen properly.

He is quite certain that hormones are a playing a large factor in whatever is going on. I showed him the article, and he was familiar with AIPD/AIPA. He said it could be a possibility but also mentioned a few other autoimmune diseases that present very similarly. He ordered several tests (I had all those done the next day and will hear back in two weeks), but said his first priority was getting me through the next two weeks without having another anaphylactic reaction. He made me take an Allegra before I even left the office and has me on a cocktail antihistamines in hopes that we'll be able to ward off another attack. After we get through these next two weeks, Lord willing, he'll then do the standard allergy panel tests and a progesterone allergy test.

Because we don't know what's going on yet, he does want me to be extremely cautious. I can't drive any sort of distance without another adult in the car. He also suggested I get a medical ID bracelet and medical alert button in case I fall and can't get up ;)

Probably the biggest disappointment for me was his recommendation that I stop nursing. For those who have followed our breastfeeding saga, you know that nursing Michael has been a true gift. I have treasured the nine months I've had, and I am deeply saddened that it's come to an end. But nursing can cause hormones to fluctuate, and if there's even a chance that my hormones might settle down naturally and this all might go away, then it's worth the sacrifice. Michael needs me alive and healthy more than he needs my breastmilk.

All in all, I felt like it was a sobering, yet encouraging appointment. We have a course of action, and I feel like I'm in very good hands. It's a little more serious than I originally thought, but the best I can do is prepare for the worst and trust God with the rest.

HOW ARE WE DOING?

We are a mixed bag of emotions right now.

Yes, we're scared and confused. We're tired and weary. We are on high alert every day.

But we're also grateful. Grateful for God's protection thus far. Grateful for doctors and medical advances. Grateful for friends and family who are praying for us and caring for us. Grateful for each day we are given.

It's funny how a health scare can wake you up, isn't it?

I don't think I could fully appreciate Psalm 118:24 until now...

"This is the day the Lord has made; let us rejoice and be glad in it!"

Each day is a gift, and our days are numbered.

But today, we'll choose to rejoice and be glad in the day we've been given.

PRAYER REQUESTS

Many of our friends and family have asked how they can be praying for us. Here are a few requests:

1) Pray for wisdom for the doctors and for a diagnosis.
2) Pray for physical protection for the boys and me as we're home alone during the day.
3) Pray for peace of mind for Dan and me--that we would trust in God's sovereignty.
4) Pray for Michael as he transitions to formula. He has had a rough few days so far.
5) Pray that this trial wouldn't be faced in vain--that God would use it to grow us and to glorify himself.

NEXT STEPS

Our immediate goal is to get me through the next two weeks (hopefully without a reaction). Then, on May 11, I'll meet with my allergist to discuss my test results from Friday and future tests. I will make sure to update you after that meeting.




Chelsea’s Story

Site created on April 27, 2017

Since November, Chelsea has been experiencing severe allergic reactions on a monthly basis with the most recent being an anaphylactic reaction that landed her in the ER. Our friends and family have been so kind to ask us for updates as we seek a diagnosis, so we will be sharing our story here at Caring Bridge.

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