Health Check-In :: Colonoscopy

In January, I was working through a Shingles diagnosis and needed to take a second round of the anti-viral. Thankfully, I was cleared after that round, and then I was able to get back on Stelara. The time that I was off Stelara, which was about 3 weeks, I didn't have a migraine, which was a huge blessing! And also a major confirmation of how much I hate the side effects of this medication.

I had also had an MR Enterography, which showed inflammation in my ileum, so my GI wanted to do a colonoscopy to further evaluate. The prep for a colonoscopy is never fun, and because this one was scheduled later in the day, I had more fasting time. Which sadly triggered the return of my migraines. Thankfully, I was able to take my rescue med before I had to drink the prep, so it was able to circulate in my body long enough to work and carry me through the whole process.

I had the generic of Suprep this time, and the downside was that it tasted sweeter than the name brand, which made it harder to get down. But my overall increased water intake over the past year made the additional 32 ounces of water after each round a walk in the park! I still had to sit in front of a heater outside the bathroom, because the massive amount of liquid in a short time made my whole body shiver with cold. But the upside is that I got more sleep overnight, and ultimately made it through.

Bottoms up!

When I got out of the procedure, my GI was actually very pleased with what he saw. He said that things looked better than what he expected, and that he wasn't overly concerned. That we would wait on the biopsy results and then make decisions from there.

The biopsy results came back with no evidence of pre-cancerous changes {huge praise!}. But we still have the discrepancy between the MRE and colonoscopy. He spoke with the radiologist, who is theorizing that the inflammation is deeper than what the colonoscopy can show on the surface. Because all of my other markers are good right now {no symptoms, good biopsy results, good labs}, the plan is to keep my medication the same and monitor things. I don't love the idea of inflammation simmering under the surface {literally}, because long term inflammation causes damage. But there's not much else I can do about it, except pray. Pray that Stelara continues to target the inflammation, or that other issues become apparent so that we can address them more specifically {hence the monitoring}.

So for now, I praise God for no cancer and no surface inflammation. I praise Him for no symptoms and good labs. And I will continue praying for remission to hold and strength to endure the side effects in the meantime. And a cure. Always praying for a cure for this awful disease...

Health Check-In :: MR Enterography

It has been awhile since I have done a health check-in. I have been meaning to update, but I kept waiting on test results/updates, and then everything happened with my brother... 

Migraines

In November, I saw my neurologist, and I confirmed a complete switch over to using Nurtec as my rescue medication. And that has been going well. We did determine that my migraine pattern has changed {who knew that could happen?}, and it's not that my meds are not working. So basically, my new pattern is more having a migraine every 4-5 days. I take the Nurtec, and usually I only have to take 1 pill, and I am good for another 4-5 days. Sometimes I have to take another pill on day 2, but not always. Every now and then, I have to take a pill on day 3, but that is rare. But overall, I am still only taking my prescribed 9 pills in a month, which is still a praise.

Now, I stretched that over December, and I gave myself some grace on that with all the stress and grief of my brother. With crying being a trigger for my migraines, it was inevitable that I was going to get more migraines. It was unavoidable, and trying to keep myself from crying in that situation was only going to make it worse. So over December and January, my pattern has been closer to every 3-4 days, with more times of me having to take multiple-day pills. Which is not awesome or ideal, but I am hoping that it calms down as time passes. Even coming home, I have seen improvement. I honestly expected my migraines to be worse than they ended up being, so I am thankful for that grace. And I am just so thankful I have a rescue med that works. Even in the most intense grief, the Lord was taking care of me.

GI Follow-Up

At the beginning of December, I also had a 6-month follow up with my GI. He ordered all the routine lab work, and he gave me the option of doing a routine colonoscopy or an MR Enterography {MRE}. I asked what the downside was to the MRE {thinking it would be better than having to do the colonoscopy prep}, and he said there was no downside. So I opted for that.

We also discussed the upcoming patent expiration for Stelara and insurance moves to biosimilars {which has already happened in the UK/Canada}. He said he hadn't seen any moves to that yet, but that we would just have to wait and see what the U.S. insurance companies did. He didn't seem confident that they would make decisions in the interest of patients, but instead would make decisions in the interest of cost. No surprise there. But he promised he was watching it, and he was definitely in favor of keeping his patients on the name brand drugs, as he didn't typically see the same efficacy of the biosimilars {they are not like generics}. So that still remains to be seen what will happen.

I had to reschedule my tests until I returned from Texas, but when I received my labs back at the end of December/beginning of January, all of my numbers were normal. All of my inflammation markers were still normal. Praise God!

MR Enterography

I had the MRE in January, before we left for Texas the second time. I had the {false} assumption that it would be easier than a colonoscopy. No one gave me any instructions for the procedure, and I just had previous {brain} MRI experiences in my head. And I just didn't think. When I called to make the appointment, and even when I received my confirmation call a week out, they told me to arrive 15 minutes before and said nothing. 

The day before, I got a call from the imaging center. She asked if I knew I was supposed to arrive 2 hours before the test, because I was supposed to drink the contrast beforehand. I was definitely not aware, though in hindsight, I should have known better. I had to drink 1500 mL of contrast before the imaging! Thankfully, it didn't taste bad, it was just A LOT of liquid. And it's meant to distend your bowels haha.

It definitely hit my GI system right before the test. At the risk of sharing too much, we'll just say it acted much like a colonoscopy prep. Not pleasant. I started panicking, because I wasn't sure how I was supposed to make it through the whole scan {which lasted 45 minutes}. They assured me that no one had ever had a problem {gee, thanks}, and I prayed really hard. {Sorry, mom, for all the graphic texts begging for prayers that I didn't embarrass myself in the imaging center LOL}. Thankfully, I made it through, but I was fairly miserable the rest of the day. 

-------

So I will wait for the results of the MRE, and I also have a dermatologist appointment tomorrow {just my usual 6-month skin check}. There are too many doctors and too many appointments...and I'm not even 40 yet! :)

Health Check-In :: The Migraine Dance and a New{ish} Symptom

After my last update on my migraines, I went back to my usual once a week migraine. So my 20 day stretch of no migraines was a one-time reprieve. Definitely thankful for it, but it has not repeated {yet}. Not long after that, I saw my neurologist, and I discussed with her the struggle I was having with my migraines returning on day 3. She decided to switch up my medication to see if we could get some better results. 

Long story short? It did not go well. You can skip over 2 paragraphs haha.

Basically, she gave me some Nurtec samples to try, and our initial plan was going to be to switch to that as my rescue med. But insurance immediately denied it. So she decided to have me try another triptan {Rizatriptan}, to see if that could eliminate the 3rd day issue altogether, and to only use the Nurtec sample as a backup. In the meantime, she was going to continue appealing insurance. The good news? The Nurtec worked GREAT for that day 3 option! And because of the type of medication it is, I don't have to worry about taking it, even if I have already had a triptan for 2 days. The bad news? The Rizatriptan was awful. Didn't even get rid of my migraine on day 1. Needless to say, it was a rough month, and I was begging to switch back to Sumatriptan, and I told her that if insurance denied Nurtec again, I would just live with the 3rd day issue. {Have you kept up with all the meds? Haha - no need, this is for my own record, really}.

I assumed insurance was going to deny the Nurtec again; it's expensive, and I already take an expensive medication for my Crohn's {which, ironically, is necessitating this migraine medication}. But by God's grace, they approved it! So right now, I am still mainly using Sumatriptan as my rescue med, with the Nurtec as my day 3 backup. I have an appointment with my neurologist in November to discuss the best plan moving forward, to see if I continue as is, or switch fully to Nurtec.

Other than that one-month blip, I feel like I have found a fairly steady rhythm with my migraines. But when people ask if I am feeling better, it's really hard to answer that question. Mostly, the answer is yes. But that comes with a very delicate balance, what I call "the Migraine Dance." I mentioned before how I have to have all these perfect conditions to keep the migraines at bay. From what I eat, to what I smell, to keeping out of the sun. The right amount of sleep, the right temperature, not too much sun, enough water, the right smells. And quite frankly, it's exhausting trying to balance it all. Because if I slip on any one of them, it's all over. And my nice weekly rhythm ends. And it's still so frustrating that I have to work so hard to manage it all like this while still taking a whole separate maintenance medication {Topiramate} that causes a whole other set of side effects. Sigh. 

While it's difficult and exhausting, I continue to dance, because there are no other options. Doing the Migraine Dance is the only way to feel better right now. But I am thankful that the dance helps.

-------

As far as Crohn's, I have had 2 more flares this year {I had 2 prior to my last update}, but thankfully my labs in May were normal again. So while that brings a certain level of comfort, it's concerning to see flares in remission, and I have to just watch them closely. It means I won't be moving to a yearly GI visit anytime soon {and will stick to every 6 months}. 

My fatigue has returned over the past few months, so when I see my GI in November, I plan to have him check my B-12 levels. In addition, I need to ask him about my new fun symptom: body aches. I actually mentioned it when I saw him in May, because I started feeling achy earlier this year. Just feeling like my muscles were aching, like when you exercise and feel a little sore, but was just feeling like that pretty much all day, every day. He tested my creatine kinase, but that came back normal. Since then, the body aches have increased, and there are days when my body is really hurting. Many days, I wake up stiff and achy, and it takes a bit for me to kind of shake it away. It doesn't actually go away, but I can usually manage through the day, but then by about 2pm or 3pm, I am really feeling it, really hurting. And I am feeling it more in my muscles and joints now. 

The hard part is that I have no idea if it's inflammation from Crohn's, a side effect of Stelara {which it is listed as one}, or a side effect of my migraine medications. So now I am on a quest to figure this new thing out. I'll be honest: I don't fear turning 40 in February for the reasons most people do. My body has already lived the life of a 40 year old, so I fear what my body is going to feel like when I actually turn 40 haha. Blah.

-------

I follow Phylicia Masonheimer on Instagram, and she recently posted these words in one of her stories:

And it was just what I needed to hear to get my heart re-focused. Because living with a chronic illness that even badgers you in remission can be so draining and discouraging. It takes so much of your energy, physically, yes, but also mentally, emotionally, spiritually. It can so easily consume every part of your life, and you {I} can be tempted to focus so much of that energy inward. I can so easily become self-focused, and the pity party comes to town. It's not to say that the struggle is not valid. But when I take my eyes off Jesus, I quickly lose my way, and it becomes that much harder to bear. 

Because He is Jehovah Raphah, my healer. For whatever reason, He has not chosen to bring full healing to my diseases. He has not allowed remission to look the same this time. And while that is hard and sad and frustrating, He is still good, and He has not left me. Physical healing has not yet come, and it may not anytime soon {or even this side of heaven}. But there are countless other ways that the Jehovah Raphah has made Himself known to me...

He has healed my heart of of stone and the deepest longing in my soul. There is spiritual healing in the blood of Jesus that far surpasses my need for physical healing. And while the deepest healing of my heart and soul in salvation through Jesus Christ would be more than enough, I can look back over my life and see how He has brought healing in other tangible ways...in broken relationships and broken plans/dreams. I have even seen physical healing in my health, from my first remission and Tumorthy, to infertility and relief from varying symptoms along the way. 

And so I look to Jehovah Raphah, God my healer. And I praise Him for the healing He has already provided, and for the healing that will eventually come. And I ask Him for the strength to continue to dance and endure.

One Year Later :: A Migraine Win!

It has been a full year since I first saw my neurologist, and I have been reflecting on my progress. It has definitely been slow and steady, and I haven't always been convinced that the treatment is working, or is even overall beneficial. 

I still struggle with the fact that I am taking a medication to chase a {different} medication side effect. I thought that maybe with time and improvement that I would get over that, but I haven't found that to be the case. I still feel slightly uncomfortable with it. That's probably because I haven't seen massive improvement in my migraines, and I don't necessarily "have my life back," so it's still sitting as this weird question mark on whether or not I made the right decision. 

I also have not loved how I have felt on this medication {migraines aside}. The neurologist had told me that I could experience side effects from it {lovely}, and while it wasn't too pronounced at first, I am starting to feel it more the longer that I am on it. It has been strange things like paresthesia {random numbness and tingling in my arms and legs}, but it has also included things like memory problems or feeling more emotional or agitated. Right now these side effects are manageable, but I have to work at them; meaning, I have to work harder at focusing and remembering what I am doing, or managing my emotions and my irritability, because I can physically feel it. And while I absolutely have control over those things, it's frustrating that I am now fighting a medication that heightens those things, does that make sense? Sigh. So it's just an added piece that makes things harder. And I have to weigh how beneficial it really is.

When I started taking the maintenance medication, I was experiencing 15-20 headache days a month. Almost immediately, that kicked down to 12-15 headache days, which was a big win, but I have still been getting fairly bad migraines at least once a week. While I will absolutely take that over what I was experiencing before {beggars can't be choosers, right?}, it has still been really tough knowing that I am taking medication to chase a medication side effect, that comes with its own side effects. 

Now, having a rescue medication has made a huge difference because my treatment of Tylenol and an ice pack wasn't really cutting it before. But now I can take my rescue med when I feel a migraine coming on, and it usually knocks out the migraine, and I can be pain free! Also a huge win! The downside is that it has taken some time for me to figure out the right timing on the rescue med, since I can only take so many at a time and in a month. In addition, I have found that I will take my rescue med, the migraine will go away, but as soon as the medicine wears off, the migraine comes raging back. If I take a second pill, the migraine goes away again {which is great}, but if that then wears off, and the migraine comes raging back again, then I'm stuck. I can't take another pill. And that has happened fairly often in the last few months, which is a fairly frustrating process. So then I find myself weighing my schedule and what things are most important and what things I can miss and timing out the pills based on that, and it's kind of a balancing act and just a weird mess. 

I have also learned a ton about all of my new fun migraine triggers. The weather is the main one, and I can't really do much about that. I have an app that gives me a heads up about pressure shifts, and it's pretty accurate and 9 times out of 10, I'll get a migraine at the same time I get a notification. So while I can't prevent the migraine, at least I have a heads up it's coming {or at least I have a confirmation of the pressure building up behind my eyeball haha}.  Also, crying. For some reason, the act of crying triggers a migraine, and that's really frustrating, considering that the migraine maintenance medication has a side effect of making me more emotional...which causes me to cry more than I normally would. So I find myself feeling like I want to cry more than I normally would, but I also find myself trying to suppress that crying because I don't want to trigger a migraine. Make it make sense.

Another big one is certain strong smells- all candles, strong perfumes, food scents, and smoke are out. I catch a whiff and I have to immediately get to fresh air or it will trigger a migraine. Even the smell of smoke on Mike's clothes from a bonfire is enough. It's so sad, and he is so gracious to shower and put his clothes in the washer before he comes upstairs. Also, heat and squinting in the sun {??} is an automatic migraine. I have to be sure I have my sunglasses with me at all times, and I have to actively focus on not squinting or frowning while I'm outside haha. I feel so high maintenance about it now, but it's just not worth the migraine later.

As I type all this out, I realize it sounds ridiculous. Because it is. I know it is, but when you suffer from migraines, you will do anything and everything to avoid them. You will deal with the weird side effects to get some measure of relief...because they are THAT BAD. It's not just a headache. It is so much more than a headache.

So this has been my year. A long, slow journey {not unlike my Crohn's journey, so I guess it's just my overall health journey}. I had been averaging 1 migraine a week, some of them lasting 2-3 days. That seemed to be my new "normal."  

BUT...

My huge migraine win? Is that I went 20 days without a migraine. 20 days! And then on top of that, I took my rescue med, the migraine went away, and it didn't immediately come back! This is a HUGE win! 

Will this repeat? I have no idea. But I just have to pause and recognize this victory for what it is. Because I have not gone that long without a migraine in over 2 years. 2 years. Cue the tears...but not too many ;) 

And that gives me hope, and a little bit of strength to keep fighting the weird and hard side effects. Because that's 20 days of NOT having to manage a migraine. Thank you, Jesus!

Health Check-In: Migraines and a Crohn's Flare

We have been so busy the last couple of months, that I have hardly had any time for my dear little blog. Hardly any time to provide our normal life updates. So it has been awhile since I provided any updates on my health stuff.

Not that anyone is desperate for an update...but I like to keep my own records so I can look back on my own health journey ;)

Crohn's

As a quick recap...I was able to declare remission for Crohn's back in May. I had been feeling pretty good on that front, but at the end of September, I found myself in the middle of a flare. And I have to admit that it was really tough. It lasted almost 2 weeks, and it didn't matter what I ate. And all of the stress and fear and hardship of those 3 years of sickness came flooding back. I had been well for just 4 short months, and now it felt like it was all fading away again. It was really hard not to feel overwhelmed, like it was all over, and that it all meant that remission was over. 

Thankfully the flare passed, but now I am wary. And waiting for when the next flare might come. And I really hate living in this place again. When I achieved remission on Humira, I experienced periodic flares, but they didn't last quite as long, and they didn't happen so close after achieving remission. So I am scared, and I have to constantly take my fears to the Lord, trusting that He is still in control. I know He is, but I just don't want to go back. I know He is good, even if He does take me back...but I'm wrestling a lot with that right now, so could use a lot of prayer on that.

Also, super random: I have mentioned before how Crohn's affects more than just your GI tract, and for me, I have seen inflammation in my gums. I have been fighting that inflammation for several months, and most recently was recommended a prescription toothpaste to try to help. The dentist said I have healthy teeth and healthy gums, but this inflammation {which manifests in bleeding gums...so how is that healthy??} just hasn't calmed down...hence, prescription toothpaste. Crohn's. Is. Ridiculous. 

Migraines

Back in July, I was still struggling with the migraine medication that the neurologist put me on. My migraines had decreased in intensity, but I was still getting a headache almost every day. So when I met with her in August, she immediately moved me to a new medication. The complication was insurance. In order to put me on more migraine-specific medication, I have to try 2 medications first {the first one I was on was a beta-blocker, and the one I am on now is actually an anti-seizure medication}. Once I give those a worthy try, then insurance is more likely to approve the more expensive drugs. I get how the game is played, but it doesn't make it any less frustrating. 

She did warn me that this second medication was not her favorite {awesome}. It tends to have less-than-wonderful side effects, but if I could stick it out, then I might have access to some better options. So I agreed to give it a shot. The main side effect that people complain about is that it makes them feel kind of spacey and makes it hard to focus and concentrate. While I have certainly struggled with that, I don't feel like it has been as bad as I anticipated. So I'm really thankful for that. Do I like walking into a room and forgetting why, or taking twice as long to think about the task I am working on? Not really. But it makes me more intentional, and it's not that much worse than my usual tired mom-brain, so I can't really complain. 

Another side effect is that it can make you more emotional. And I have seen an uptick in my emotions. So I basically don't trust them right now. I cry more often, blame the medication, and wait a few days before I respond to situations {if I even do at all}. Which, honestly, is not a bad practice. Other than that, I have experienced on-and-off numbness in my arms and legs, which is a truly bizarre feeling. I have lost the weight I gained on the last medication, and the insomnia is also gone {praise Jesus!}

While I could do without side effects, they have been manageable enough for the benefits to my migraines. I have definitely seen a huge improvement! I would love the magic pill that gets rid of ALL my migraines. I would love to go weeks or months without having another one. But the goal on the preventive medications is to reduce headache days by 50%. So since I was at 18-25 headache days a month, we're trying to achieve only 9-13 headache days a month. And I have definitely seen that with this medication. 

It's still hard, because that has still meant about 1 migraine a week; the pain is bad enough that I have to take my rescue med. And I usually end up having to do that 2 days in a row. And that's the max I can take in a week. So if I get more than 1 migraine a week, I'm out of luck and have to power through. Thankfully that hasn't happened as often lately. But it is crazy to think that 1 migraine a week is progress and success! But when I think back to where I was... I am just so thankful for how far the Lord has brought me. That this new preventive medication is working better, with more manageable side effects, and that I have that glorious rescue med.

-------

In the busyness, I have learned that I have been pushing my body to its limits, and it's not a good thing. Since I achieved remission, I was ready to return to pre-sickness life, and I dove all in to all the things. And I have learned that I just can't go back to that level of activity. While that is frustrating in some ways, I am realizing how the Lord has gently been reminding me to slow down, step back, choose differently. So I will be fulfilling some commitments through the end of the year, but then adjusting our schedules a bit for the Spring. I just have to make different choices, even in a "healthy" state, especially if I want to stay healthy. But even aside from my health, I feel like we have just been running from activity to activity, and we have lost a good balance in our lives. So it will be good to find a better, more healthy rhythm for all of us in the Spring. We just have to survive the craziness of the rest of this year ;)

High Five for Friday!

{one} We just wrapped up a super fun week at VBS! We were all cadets on spaceship Galactic Praise, and we enjoyed a full week of astronomy, Bible lessons, slip 'n slides, silent team cheers, green gorillas, and crafts. I helped with the 2nd and 3rd graders, and each of the kids had their own group. Aiden was an Aqua Comet, Eli was a Red Shuttle, and Maddie was an Orange Rocket! {My group were Flame- Golden- Meteors}. Even our friend C from our old neighborhood joined us! The kids had a "blast" {pun intended} and basically had the time of their lives ;)

{two} We have adopted a deer! Ok, not really, but we have had this deer hanging around our yard for a few weeks now, and she basically has adopted us. She has just made herself right at home in our yard, and is {mostly} unfazed by our presence. Which, honestly, is pretty amazing, considering how our kids dance around and scream and yell whenever they see her haha. While it's not fun that she eats our plants and leaves a mess in our yard, it's pretty special to see her almost daily. We're hoping that she is getting comfortable enough that she might bring her baby into our yard soon!

{three} Aiden recently had a small procedure to have a mucocele removed from his lower lip. We have no idea how he got it {they're usually caused by mouth trauma}, but it just wasn't going away on its own, so we had to have it removed. Poor little guy had to see multiple doctors before we could actually get someone to remove it, so he had a lot of time to prep and work up his courage. They gave him laughing gas, and he was a rockstar patient! It was a little sore for a few days, and he had a bruise on the outside of his mouth for a bit, but otherwise, he's healing nicely, and hopefully we don't have to worry about it again!

{four} At the start of the summer, I had mentioned that I had started a maintenance medication for my migraines. While I definitely saw a difference in the severity of my migraines, I was still having a headache almost daily. So they went ahead and increased the dose of the maintenance medication. It has been about a month now, and I am just not seeing much more improvement. I'm not giving up yet, and I will have a follow up with the neurologist in August. But I am still having a lot of headaches, and had a pretty severe migraine recently {all the full-blown symptoms, lasted 5 days...not fun}. While the headaches don't all turn into migraines, and I'm able to manage most with Tylenol, it's still not normal and just gets in the way of everyday life. I am also struggling with insomnia and temperature regulation {I'm either really hot, like it feels like I'm burning up from the inside out, or freezing cold}. Sigh. So we'll see how the next few weeks go, and then discuss next steps at the August appointment. I knew this was a possibility; I was just hopeful I could find a better amount of relief in this first round of "easier" medications...

{five} I can hardly believe that we are halfway through the summer! We have been on break from school {though still practicing our reading}, and spending our days at the pool, playing with friends, and trying to survive the humidity. We still have lots planned for the second half of the summer, but we are already starting to see our schedule fill up with all the fall activities, and we'll be jumping into all of that before we know it :)

Happy Friday!

Health Check-In :: MRI Results

After my appointment with the neurologist, she wanted to have a repeat MRI done, since I have a history of a tumor on my pituitary gland. I also had some lab work done to check my prolactin, B-12, and magnesium levels.

Thankfully, my B-12 and magnesium levels were normal. But my prolactin levels were slightly elevated again, so I was curious to see what the MRI showed. The good news is that there was no indication of a tumor in/on my pituitary gland. And "the overall appearance of the brain is normal." That's always good to hear :)

Since my prolactin levels are elevated, I will probably need to go see an endocrinologist to see if there's something else I need to address. It could also just be a result of medication I take, changes in hormones, a result of stress from being sick for so long, etc. So for now, it will be something we monitor.

The really interesting thing is that she could see a few tiny white dots scattered in the white matter of the brain. They are nonspecific {and benign}, and most commonly seen in individuals with a history of migraine headaches. Again, I didn't need more proof of the migraines I have experienced, but I thought it was so interesting that there is actual physical proof on my brain.

I have been on the maintenance medicine for a little over a month now. I have seen a slight improvement, mostly in the severity of my migraines. I still have had quite a few headache days, but most of them have been managed with Tylenol. I do also think that has been helped by the rescue med. If I can take it in time, then it usually knocks the migraine out, which turns a once 2 to 3 day migraine into a 1/2 day one...a huge difference! I am going to give it a couple more weeks and then check in with the neurologist, as we may have some tweaking to do to help bring the overall headache days down. But I have reflected more than once on how grateful I am that I was able to get in to see her in April, and did not have to wait until September, like originally planned. 

I'm not claiming victory over migraines yet, but I am definitely headed in a better direction!

Health Check-In :: Migraine Management

I have mentioned my migraine woes before, and unfortunately, I haven't seen much improvement. I kept holding out, hoping that my body would adjust to my Crohn's medication and the migraines would subside. And while they haven't been quite as frequent as they were a few months ago, they're still fairly debilitating and I finally had to cry uncle and seek out some additional help.

I originally had an appointment scheduled for September because that was the earliest I could get in to see the neurologist {!} But God was incredibly gracious and a spot opened up for me to see her this week! And she is awesome. It was a really good consult; she spent a full 45 minutes with me. I got all of my questions answered, I learned a ton, and I think we have a good game plan moving forward.

Once again, it was comforting to have my symptoms affirmed. I know that I am not making them up, but sometimes I question just how bad things are, if I am just a baby about my symptoms, if I should just suck it up and deal. But based on our conversations, she confirmed that I am definitely in the category of "chronic migraine." {So I'm not just a whimp! Haha} And despite all I have tried to help prevent them, I have the deck stacked against me in a lot of ways. There are just so many factors at play {hormones, weather, Stelara}, I didn't really have much of a fighting chance haha.

If I plan to stay on Stelara for the foreseeable future, which I do, since I am feeling so much better from my Crohn's, then I will need help in combatting these suckers. So we are going to try a daily preventive medication, as well as a "rescue" medication. It may take some time to find the right dosing and drug combination, but I feel hopeful that I may be able to see some relief soon. 

Because of my history {remember Tumorthy??}, she wants to do a repeat MRI, just to rule out any other issues, and be able to say definitively that this is indeed chronic migraine. She also mentioned that oftentimes, white spots will appear on the MRI scans of migraine sufferers, so I'm interested to see if we can see that. There's no real medical benefit to that, I'm just curious :)

She's also going to check my prolactin, B-12, and magnesium. Prolactin to see if there's anything amiss from my history of a macro adenoma. B-12 because that low levels can cause migraine {who knew?!? When my GI checked my levels last year, they were fine, but I haven't been supplementing so I am really curious about that one}. And magnesium was my request, simply because I have read a lot of research that shows low levels can cause migraine {and it's not something I have ever had checked}. She said it's more of a one snapshot in time, so it's not always as telling as you might think, but she wasn't opposed to checking anyway.

So there are still a lot of steps along the way, but I am so thankful that I am able to start that process now, instead of 5 months from now. 

Here's to another health journey...

Crohn's Chronicles :: 3 Years

This week is Crohn's & Colitis Awareness Week, so it's fitting for me to update where I am in my journey.

I have been sick for 3 years. It's still hard to reconcile that; it has just become our way of life. For the most part, I have learned to work around it, and we do the best we can. I have been sick for 1/2 of the twins' life, and most of Aiden's, and our Virginia friends and church family have only known me sick. My kiddos faithfully pray for "Mommy to be feel better" at every meal time. And while I am much better than I was, even 6 months ago...I still can't officially say that I am remission.

It was so disheartening when my suspicions were confirmed, and I found out that my Crohn's was active again. I had been experiencing a rapid onset of symptoms for 8 months, but I still didn't want to believe it was true. But I had a good doctor, there were new medications on the market, so I knew I would just have to fight hard for remission again. I had no idea that I would still be waiting to see it, now 3 years later...

I spent an entire year on a drug {Entyvio} that did very little to curb my symptoms or heal my insides. It's hard enough to fight this disease, but to work so hard, put toxic chemicals in my body, only for them to give you extra side effects, but not actually do what they are intended to do...I was disappointed, for sure. But I was going to continue fighting, because what else could I do?

When we moved to Virginia, I was so very sick. Entyvio was not working for me, and I was now trying to figure out health stuff in a new state with a new doctor. I still have nightmares about spending most of that first 2 months here, stuck in a hotel bathroom with 3 kids and a dog running around. 

When I moved to Stelara, I was just so tired. Actually physically tired, but also tired of being sick, tired of having to say "no" to things, tired of being the sick mom. While I started to see some improvement, it was still very slow, and I wasn't convinced that I would ever see remission again.

When my doctor moved me to 4 week injections, I was nervous about side effects. I had already experienced quite a few when I started Stelara, and I was not looking forward to experiencing more. My concerns were valid, as I have struggled the last 6 months with debilitating migraines. To the point, where I have had to seriously weigh the pros and cons of taking this medication. While it has finally brought me some relief from my GI symptoms, my quality of life has not yet improved because of the migraines. I was happy to finally have some answers regarding my fatigue though, and I have slowly seen that fade away as my iron levels increase. I still tire quickly than most, but I can happily say that I don't require a daily nap to make it through the day! Which is good, because my children don't let me do that anymore haha {I am incredibly grateful for the extra time they did give me...I realize my children have napped longer than most, and I know that has been a gift of grace from the Lord}.

So here I am, 3 years after my initial symptoms showed up, still fighting, still hoping for remission. This is the closest I have felt to it in the 3 years I have been sick. And while the past 3 years have been a long, slow, difficult journey, I have SO much for which to be thankful.

In that 3 years, God has sustained me in countless ways that most would view as impossible. I am still standing, still functioning. He has brought relief from most of the GI symptoms, and that in itself is a huge praise! He has kept our family healthy; part of the struggle has been battling all of this in the middle of a pandemic. But God has kept us all healthy so that I haven't had any setbacks in my fight for remission. 

He has kept me out of the hospital. That is a miracle. The severity of my disease, coupled with how long I have been sick...it's a constant fear in the back of my head, because clinically, it's inevitable. And yet, God has been faithful to keep me healthy enough to avoid any hospital stays for 3 whole years. Even when I have been at my sickest, I have been able to avoid any major issues.

The migraines are starting to slow. I'm not convinced that it's permanent, but I am taking the relief where I can get it. I was having a migraine every 5-7 days, some of them lasting 2-3 days. But I have now gone 2 months with only 1 each month. I am hopeful that my body is finally figuring out how to play nice with the Stelara, and that they will slowly dissipate entirely. Please God.

I have a follow up appointment with my GI next week, and I am hopeful about that conversation. I will keep fighting, keep praying, keep hoping that maybe 2023 will be my year for remission!

Crohn's Chronicles :: The Battle of the Migraines

I have now been taking Stelara every 4 weeks for 4 months. My Crohn's symptoms are pretty much non-existent at this point, and I cry just thinking about how much better I feel...from a year ago, and even just 6 months ago. I feel like remission is in site; which is such an incredible gift, considering that I will hit 3 years out of remission next month. Our schedule has been jam-packed with activities this last couple of months, and it is not lost on me that there is no way I could have done so many things a year ago. There is no way that I would have had the energy for all our schedule demands, even just 6 months ago. And that is cause for HUGE celebration and praise!

However, there has been a pretty steep price to pay for my Crohn's feeling better, and that is the increased frequency and severity of migraines, which is a side effect of the medication. I am not at the "chronic migraine" stage yet {which is defined as 15 or more headache days a month ...thankfully}, but I'm not far. And as hard as it has been for me, I can't believe it has to get so much worse to be considered a chronic problem. I have been averaging about 1 a week, or about 12 days a month {since they can last 2-3 days}, and it has been such a challenge...

Most of my migraines start with a heavy pressure in my nose {random, I know}. That pressure builds to the point where it eventually feels like someone punched me in the face, which then spreads into an ice-pick headache behind my eyes. Many of them come with nausea and vomiting, though the last couple of migraine episodes, I have been {thankfully} spared those symptoms. The Lord has also been gracious to allow the worst of the migraines to happen overnight, though the last few have been during the day, which makes it a challenge with 3 loud kiddos running around.

I still haven't identified any food triggers, but am more and more convinced that the medication is causing them, and the weather often triggers them. I also haven't ruled out a hormone issue yet. I have appointments scheduled between now and the end of the year with my GI {to discuss confirmation of remission and Stelara side effects}, my gynecologist {to see if there is a hormone issue}, and a GP {to get help with migraine management/treatment}. I even have an appointment with an oral surgeon to finally get my wisdom teeth removed, just in case the pressure from my wisdom teeth is somehow making the headaches worse. I'm probably grasping at straws on that one, but they have to come out anyway :)

My point in posting this is not to complain. They have absolutely been a challenge, and these migraines have brought me to my knees on more than one occasion. But when I read back through my posts of my Crohn's symptoms a year or 2 or {almost} 3 years ago, I am reminded of where I have been, how the Lord has sustained me, and how far He has brought me. So I hope that one day soon, I will be able to look back over these migraine days and rejoice over the Lord's healing and care.

My kids have recently started saying this sweet little phrase: "Mommy, what if we could just snap our fingers and you had no more Crohn's?" Oh, what if, my baby loves?!? I love their little hearts and how they faithfully pray "for Mommy to feel better and be healed from Crohn's" every mealtime. I'm sad that so much of their little years have been filled with a sick Mommy. But I am grateful for the Lord's forever watch-care over us, sustaining us through these long years of sickness, and for the hope he brings in glimpses of healing. While I pray so much for healing here {and soon}, I also long for the day when the Lord is able to look at me and with only His Word say, "Erin, you have no more Crohn's."

Crohn's Chronicles :: Stelara Increase

I got my lab results back, and my maintenance level of Stelara was too low {which means I am not at therapeutic levels and there is not enough in my system}. So my GI actually wants me to move up my dosing to every 4 weeks. It took a month, multiple denials and re-submissions, but insurance finally approved it! It's actually an automatic denial through insurance because it's not currently approved for shorter intervals for Crohn's. But there is growing evidence that more people achieve remission at 4-week dosing, instead of the currently approved 8 weeks. So I am thankful for a GI who is current on that research and willing to go to bat for me with the insurance company.

I actually took my dose yesterday, which is 7 weeks from my last one. But now that everything is approved and settled, I can take it every 4 weeks moving forward. Since I saw improvement on my last colonoscopy, I'm hopeful {prayerful} this could be the little extra boost that will kick me into remission. 

Some good news: I have definitely seen improvement in my energy levels, so the iron supplements are helping! I still have to manage my fatigue and steward my energy well...but I am no longer in need of a nap every day, which is so helpful on the days when I just can't get one {which is most days haha!} 

I will be curious to see if any side effects from Stelara will increase with the increased frequency. I do believe that Stelara has intensified my migraines, but I am wondering how boosting my iron levels will help balance some of that. I have been unsuccessful in identifying any food triggers, but do believe the migraines are mostly triggered by environmental factors: changes in weather pressure {which I can't control}, loud/constant noises {hello, children}, dehydration {something I can control!}. I do plan to find a new Primary Care Physician and address the migraines more directly, especially if the increase in Stelara becomes an issue. 

I recently saw my dermatologist again for my 6-month check up. Since I am on Stelara, she wanted to see me more frequently, and she confirmed that again, now especially knowing I am increasing my dosing. I'm sure all of the biologics come with an increased cancer risk, but Stelara is the only one with a documented risk increase for skin cancer. So I'll see her often, because I'm not messing with that. She removed and biopsied two more moles, but thankfully they both came back benign. 

It's crazy to me that to "feel better" I have to manage vomit-inducing/ice-pick-painful migraines, fatigue, and increased skin cancer risk. And those side effects, or consequences, or whatever you want to call them, are terrible, for sure. But this is the best way that I can describe to people how sick I really have been: hands down, every day, I'll take those side effects, because as terrible as they can be, I still feel so much better than I did. It's not perfect; I'm still not at "remission better." And trust me, I would rather not have ANY of it. But this is life with Crohn's. 

As I think back over the last 2.5 years, I feel overwhelmed and exhausted. I'm crawling toward an unknown finish line. And there is a reality that this won't be my last race. Even if I achieve remission, and even if I have a few good, "healthy" years...I face the reality that I will be back in active disease again, because Crohn's stinks and there is no cure. The damage that has been done to my intestines over the past 2.5 years is irreversible, so I most likely will become part of the 75% of Crohn's patients that have at least one surgery in their lifetime. If not within the next year, then for sure the next time I'm out of remission. And some days that feels really defeating, given how much I have fought for health.

I also feel grateful and encouraged. The Lord's timing certainly has not been mine, and I struggle sometimes to understand how me being sick for so long is helpful or productive. But there has been improvement; I am not where I was a year ago, or even a year before that. While I'm not at 100%, I am able to function more than I could before. I have more good days than bad days {something I couldn't say a year ago}. The Lord has provided what I have needed for each day. He has not forgotten me, and He has taught me more dependence on Him. And I am able to teach my kids empathy and patience, the value of prayer, and serving even when we don't feel our best. And we all long for heaven when Mommy can "get a new tummy that doesn't have Crohn's" from Jesus :)

High Five for Friday!

Just a quick update on life around our house these days! :)

{one} I am now 28 months in to active Crohn's Disease, and I can finally say that I am feeling better! That's HUGE! I am feeling better than I was even a month ago, and it is such an encouragement to see actual improvement. I had another dose of Stelara recently, and I really think it's helping. My symptoms are not 100% gone, but I'm seeing fewer and less frequent GI symptoms. I still have to balance my energy levels; when I start to feel better, I am tempted to run ahead and get back to my pre-Crohn's activity levels. And I'm not quite there yet. So fatigue is still a very real issue. And I am still trying to manage my migraines. But I am {and my doctor is} definitely encouraged!

{two} Aiden is doing really well with potty training! He has asked every day if he can have his diapers back {the answer is always "no"}, but he also really loves his Scooby Doo and Dinosaur underwear and it hasn't kept him from progressing. He has had very few accidents, and we are feeling more confident about longer times away from home. I'm so proud of him! And I love that he still runs out of the bathroom yelling, "Mommy, Mommy! I went pee pee in the potty! Are you so proud of me?" :)

{three} Eli had another check-up for his eyes. We have been patching diligently, trying to strengthen his right eye. The good news is that it's working! Three months ago, he was at 20/80 vision, and now he's at 20/70...so progress is really slow, but it's still progress. So we stay the course and continue patching for all his waking hours and pray that his eye/brain start making more progress. I am so proud of how he wears his patch like a champ! It's not his favorite, and it's not always easy, but he has been working hard, and he was so proud of himself when the doctor praised him for all of his hard work!

{four} Granny recently sent some fun mail that included puzzles of our family and some cutting practice pages. The kids love getting mail, and they loved these fun activities!

{five} On Tuesday, I celebrated my 10 year anniversary at the bank! 10 years ago, we prayed for the Lord to provide a new job closer to home, and we never could have imagined what a huge blessing that new job would be. I loved my job so much, and it was so hard to step away from full time work, but I knew it was what I needed to do for my health. So the Lord was gracious to allow me to stay on part time, and here I am 10 years later, still able to contribute and be part of the team, even in Virginia! This job has been such a God-send for our family, and I cannot say enough good things about the company and the leadership for which I work. I am so very grateful!

-------

Happy Friday!

Crohn's Chronicles :: Improving Labs

I have been feeling ok since the last time I updated. I was feeling pretty discouraged at the beginning of December, but it really helped to see some more improvement in my symptoms over the holidays. I'm not back to normal or even feeling great yet, but I also wasn't counting down the days until my next Stelara dose, so that is really positive news!

I had that Stelara dose {first time solo, without a nurse!} at the end of 2021, so my doctor had me do some lab work right before it to see where we were. My C-Reactive Protein {which measures acute inflammation} is finally in the normal range! Which is also good news as it relates to my higher cholesterol levels: if you have high LDL but a low CRP, that low CRP reduces the risk from the high LDL. So while I still need to address the high LDL {which is probably mostly attributed to low activity...hello, fatigue!}, my risks are manageable and not worrisome right now. Baby steps :)

My Stool Calprotectin {which measures inflammation in the GI tract} is still high. BUT...it has come down so much from where it was! In May 2021, it was 322 ug/g {normal is 0-120 ug/g}, which was an improvement from May 2020, when it was over 1,000. Now it's down to 166. So still high, and outside the normal range, but we're getting closer!

All of my other numbers {CBC panel} are back to normal, which makes sense, considering I have not had any bleeding in several months. TMI...sorry.

He also checked my medication levels. I had a good amount in my system that day before my next dose, which is good because it means it's working as a maintenance dose. However, my doctor said there's still room to adjust my medication if I start to see symptoms return before my next dose. So we'll see what the next {now} 6 weeks hold, to see if I need to change my dosage from every 8 weeks to every 6 weeks. I won't hesitate to increase that dosage if needed, but of course, I would prefer to put as little as possible in my body to achieve good results. I also don't have any antibodies built up against the medication, so hopefully that holds for a very long time...

--------

I know that was a lot of detail and clinical-speak, but I want to have a record of my progress. Because I am seeing improvement! It's slow, and the measurement/timing seems to take SUCH a long time before adjustments can be made. But we're getting there. I don't feel great, but I feel ok. Most of my GI symptoms have subsided {hooray!}, so now my main focus is fatigue, achiness, and migraines.

I know I have talked about fatigue before, but this has really been a struggle for me this past year. Fatigue is part of a chronic illness, especially one that has been active for 2 years. But this level of fatigue has been unlike any of the fatigue I have felt in the past. I have very limited energy, and when it's all used up for the day, my body just shuts down. I'm done. And please let me be clear: fatigue is different than being tired. I feel exhausted, even after 10 hours of sleep. I feel like I need a nap after a simple shower or running an errand. And it's not just feeling sleepy; it's the physical feeling of your body being done. It takes so much effort to get up and cook dinner and do normal things because my body just feels heavy from exhaustion. If I do get a burst of energy, I often try to capitalize on it as much as I can {because hello, life with 3 kiddos}...and I pay the price for it. I'm still working on that balance, and I'm thankful for a patient husband and kiddos. Because it's hard when mom needs to "rest" again. 

I still have a journey ahead of me...but I feel like I am finally starting to see a glimmer of light at the end of this tunnel. The prayer is that this improvement continues and holds. For now, I choose to praise God for better labs and fewer GI symptoms. And I also choose to give myself grace when I need to rest, again, knowing that my body is healing, and it's just going to take some more time.

{Crohn's Awareness} :: 1/2 Step Forward, 2 Steps Back

It just so happens to be Crohn's & Colitis Awareness Week! I'll be honest, I'm too tired to jump all in and do all the awareness posts. I'm in too deep in active disease, still trying to get to remission. So my efforts toward awareness this year are just going to be an update on where I am in my Crohn's journey...and just a friendly reminder: Crohn's sucks :)

-------

I took a 1/2 step forward {feeling a little better after my first Stelara shot}, but am already back to pre-Stelara shot symptoms. Sigh. I had a good 3-4 weeks after that first Stelera shot. I was cautiously optimistic; I hadn't felt that well for over 18 months {!} But about a week before my second Stelara shot, my symptoms came back. I am now 4 weeks on the other side of that second shot, and am still waiting to see that same upswing again. 

I was finally able to get in to see a Primary Care Physician. I had to find one to get my B-12 levels checked, because insurance is stupid and won't cover that order from my GI anymore. He can order every other test under the sun...but not B-12. Even though my Crohn's can directly affect B-12 {who decides these rules, anyway?} I have no idea how that makes any sense at all, but...at least now I have someone to go to if I get sick like a normal person haha. 

But when I got my results back, my B-12 levels were normal. Which is good...but also bad because now I don't have something on which to blame {or fix} my fatigue. But my LDL Cholesterol is elevated again, so all the inflammation I have been experiencing the past 2 years because of active Crohn's is starting to attack more parts of my health. The prescription is to change my diet {but I already do all of the recommendations, so that's no help}, exercise {which is difficult when I am sick and fatigued all the time}, and add fiber. I will do everything I am supposed to, but it's so defeating when I am doing everything I can and my body is still falling apart. And the one thing I need, I can't seem to achieve. I need to be in remission. 

The PCP was helpful in talking through some self-treatment ideas for the migraines I have been having. I appreciated all of her suggestions, and we will continue monitoring them to see if we can identify any specific triggers. There are medication options, but I am trying to avoid those, since it's better to prevent the migraines in the first place anyway, and since I am not really wanting to add another medication. I have already seen some good results from the suggestions she provided, so I am hopeful I can start managing those migraines better.

I had a follow-up with my GI as well, and I was able to get some more details from my colonoscopy {which was back in July...long story on why it has taken so long to get those details...just know that COVID does in fact affect ALL healthcare}. He told me that there was so much narrowing in my intestines that he wasn't able to get the scope all the way through. The best case scenario is that it was just the result of inflammation, and getting into remission will fix that. But if it was the result of scarring, then I will have other issues to address, and soon we may be talking about surgery. It's expected that most Crohn's patients have at least one surgery during the course of their disease. But I have worked so hard to avoid that: being aggressive in my treatment, faithful to take my medication and stay away from my triggers, reduce stress, etc. But the longer I am sick, the more damage that happens.

And because I love seeing doctors... I also finally saw a new dermatologist for a skin check. In 2019, I had a mole removed that was biopsied and came back pre-cancerous. So I knew I needed to be sure to go in every year, but with 2020 being what it was {for COVID and our move}, and wanting to focus on getting my Crohn's under control first {so much for that}, this is the first I have put it on my to-do list. And that is also because Stelara increases my risk for skin cancer {lucky me!} So off to the dermatologist I went...I learned that most people make one type of mole, so if one "doesn't look like the others," then it's easy to identify and address it. I apparently make ALL the different types of moles...so it's harder to catch the ones that don't belong. Haha- of course I do! So...I will now be going every 6 months for regular skin checks. Thankfully this check didn't reveal any issues, but I am thankful she was instantly knowledgable about my risks {without me having to tell her}, and wanting to be proactive. 

-------

I think it's all hitting harder right now, simply because I hit that 2 year mark. I have been sick for 2 full years, and I am not seeing a clear light at the end of this horrible tunnel. And that's just so discouraging. And scary. While being sick for so long is tough, I constantly worry about the damage being done to my intestines in all that time. And even achieving remission won't reverse that damage. And of course, I am seeing it affect other parts of my health, which is never good. It's just more of the reality of my disease, and I am just so weary.

But I have made it 2 years! It hasn't been sunshine and rainbows, but I'm still here, still fighting. And I have miraculously avoided any hospital stays in that 2 years. Truly: that is a HUGE gift from Jesus. The Lord has sustained me for this long, faithfully walking with me through the {countless} hard days. I may not understand why He's not bringing healing, but I trust that He is still good.

So what's next? My next Stelara shot is at the end of December. I will get blood work done right before I take that shot to measure my inflammation levels, as well as the drug levels/antibodies in my system. My GI will then be able to determine if we change course: increase dosage or change treatment altogether. In the meantime, I will continue monitoring my symptoms, and I get to make the call on whether or not I take another steroid to help calm things down while I wait for my next shot. I will also repeat my blood work with the PCP in 3 months to see if adding fiber and trying to exercise some more improves my cholesterol at all. I know it can only help, but again...I need to be in remission. Please, Jesus.

Did I mention that an incurable autoimmune disease is not super fun? :)