New GI Doctor + Another Round of Tests

I mentioned back in December that my GI doctor was leaving the practice, and that I would need to find a new one. I was able to ask around for some recommendations and ended up with one who happened to be in the same practice as my old doctor. While I would have preferred to find a new office, I decided to give her a try, as I knew the transition would be easier, and I could always look elsewhere later, if needed.

I am so glad that I did! I really like the new GI. She spent a lot of time with me, was thorough, listened to all of my concerns, and truly wanted to get at the heart of my issues. As I shared about all of the side effects that I have experienced while on Stelara, she immediately wanted me off the medication. In her mind, there is no reason for me to have felt so bad for so long, remission or not. In addition, she was not convinced that all of what I have been experiencing are actually side effects. Given my symptoms, my intermittent flares, and the inflammation they found on my MR Enterography last year, she is wondering if perhaps the Stelara is not working as well as we think, and that my symptoms are actually my Crohn's manifesting itself. 

We did have the conversation about insurance*, and how I don't like to jump from medication to medication too quickly, given the fact that there is no guarantee any given one will work, and that there aren't an endless number on the market. And I am so grateful that she listened, and we could have a productive and respectful conversation about all of it. I absolutely hate being on Stelara. But I hate active Crohn's more. 

*Back in April, I found out {completely by accident, not because the insurance actually informed me} that, staring in May, they were going to stop covering my medication. As in, it was not going to show up on the covered list of medications on our insurance plan anymore. Which, let's be honest, they haven't been paying for my medication since January, when I signed up for the Johnson & Johnson financial assistance program. But now, there is no insurance backing, and the drug company fully pays for it. For now.

So our plan of action was to run some tests and see if we could gather some more information and get a better picture of what was actually happening before making any decisions. Fair enough. 

Bloodwork

First up, she ran some routine and extra bloodwork. My inflammation markers are normal {again}, but she said that doesn't always give us the full picture, and that I shouldn't always rely on that alone. I can also, thankfully, say that I do not have Lupus.

But again, my chloride levels were high, and my carbon dioxide was low. This has happened repeatedly on bloodwork, and I have had a couple of doctors dismiss it. She didn't mention it, so I do want to follow up on it.

DEXA Bone Density Scan

I can now add to my list of "old lady" tests a bone density scan haha. The test itself was super simple: I just had to lie on my back and wait for the machine to take a picture, and then I was done. Thankfully, the results came back normal. Which is a huge relief, considering my age.

MR Enterography

She also had me repeat an MR Enterography. After my experience last year, I was a lot more prepared for this one. The experience was very similar, and my body reacted the same way to the Breeza. But since I knew it was coming, I was able to keep myself calm and not panic before the scan haha. And thankfully, I made it through this scan without any issues.

Thankfully, everything came back clear. There was no inflammation on the results, no indication of Crohn's Disease. Which is fantastic news! 

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So it seems like my symptoms are the side effects of Stelara. The migraines, the muscle and joint pain, the fatigue...all side effects. The intermittent flares could still be Crohn's-related, but Stelara keeps them controlled. And for now, by God's grace, Stelara is keeping me in remission. 

{iPhone Rewind} :: June

I love this end-of-school-year tradition to pick strawberries at Wegmeyer Farms :)

Our deer friends are back, and they're scoping out our hostas! 

We wrapped up another great season with these soccer stars!

Aiden had a great trip to the dentist!

We started a summer watercolor class, and the kids are loving trying out some new art skills :)

And our little Chippy is back! The kids love seeing our little friend every morning :)

Our sweet girl had a couple of teeth extracted, and she did great! She was still a little loopy on the nitrous oxide and when we got to the car, she looked at herself in the car window and said, "I feel so funny, but I look so normal!" Sweet girl. 

We loved celebrating Mike for Father's Day with gifts, cards, and an ice cream taste test. We love our favorite guy!

The styrofoam ban in Virginia makes Sonic drinks so, so sad...

She's back! And she found the hostas in our backyard haha

Just playing a little "Alamo," rewriting a little bit of history...

Back to Stelara

Back in August, I started my battle with insurance over my Crohn's medication. I received approval, and then they went back on their approval, I was forced onto the biosimilar Wezlana, and I have been working through all of the side effects. 

I saw my GI about a week ago, and I was actually ready to work through a transition plan, because it was my last appointment with him. He is leaving the practice at the end of this year, and I wanted to get his thoughts on where I go from here. I can't tell you how devastating this news is; I am beyond grateful for my GI, and I trust him completely. He has fought for me on many occasions, and I was so disappointed when I heard that I would have to find someone new. But I know that the Lord has a plan, and I am praying for the right care as I search for a new GI. 

When I relayed to my {still current} GI the side effects that I have been facing, he was NOT happy. As a last chance effort and parting gift, he wanted to try to appeal the insurance one last time, as he felt I was stable on Stelara and should never have been moved to the biosimilar in the first place. {Again- he's amazing, and I appreciate his care for his patients so much}. I honestly didn't expect much, considering how long our fight took last time and that he was leaving, but I appreciated his zeal, said my goodbyes, and left. 

In less than one week, I received an uncontested approval from the insurance and a dose of the Stelara on my doorstep. Just like that, and I am back to Stelara. I can't tell you how floored I was to hear that they approved it. I didn't believe it at first; I didn't trust it. And then the pharmacy was filling the script, and it arrived on my doorstep. There's still a part of me that is waiting for the insurance to say, "haha, just kidding!" And I guess, technically, they still could. 

But for now, the Lord {unexpectedly} moved mountains for me! I didn't even ask Him to this time. I have refills for the next 9 months, and I am back on Stelara. I am praying that the transition back is smoother than the transition away. And I am praying that the blip in treatment is just that: a blip. That I remain in remission.

Stelara vs. Wezlana

I have now taken 2 shots of the biosimilar Wezlana. The first month was really rough; my body was definitely adjusting to it. For most of the month, I had an upset stomach and nausea every day, and eating made it worse. The fatigue and muscle/joint pain also returned. 

Thankfully, I haven't seen a huge change in the frequency in my migraines, but when I saw my neurologist last week, she did confirm that it was possible to see an uptick. I have noticed that I have had more nausea with my migraines, which is something that had subsided when I went on my preventive medication {topiramate}. So I am still monitoring those for now, and my neurologist told me to call her if I saw any changes. 

Another strange side effect of Stelara {and now Wezlana} is nose irritation, specifically an increase in mucous {gross? TMI? I know}. I basically wake up every morning having to blow my nose, almost like I have a cold, but I don't. It's weird, and I don't understand it, but it's something that showed up when I started Stelara, and is actually listed on the side effects list for Wezlana. I have definitely noticed an increase in nose irritation after these 2 shots. I don't know what it means, but there you go.

The good news is that the second month has gone a little better, with the upset stomach and nausea easing up quite a bit. Unfortunately, the rest of the side effects have stuck around, but I'll take whatever improvement I can get. I haven't had any Crohn's flares yet, so I am still praying and holding hope that Wezlana will hold my remission. I'll deal with the side effects; I just want to stay in remission. 

The big reason the insurance company denied coverage for my Crohn's medication and forced me over to the biosimilar is cost. And I can't say that I fully blame them. The cost of biologics is criminal. I have shown the cost of my medication before, but to see the comparison is still mind-blowing. Because even on the CHEAPER biologic, it still costs $5,500 a month for my Crohn's medication. $65,000 per year to stay in remission and save my intestines {hopefully}. That's a full-time salary, just for my medication alone!

But that's the new, better price. That's SAVING money. Because Stelara was costing $28,000 a month. $336,000 per year. So yeah, I get how the switch makes business sense. It's just that the patient is caught in the middle, and their health is never actually considered in the decisions. And all the while, stupid amounts of money are being made at our expense. 

And for the record, it only says that I owe $0, because I pay the amount billed within the first couple months of our plan year. I have to be ready to pay my full deductible at the start of the plan year, every year, without exception...because of my Crohn's medication. The Lord has always provided what we have needed, and I am so thankful. But it hurts every year, and I can't help but feel the weight and burden that my health places on my family.

13 years ago I was curled up on the bathroom floor in pain, unable to make it to meet my first GI, heading instead to the ER where I would be diagnosed with Crohn's Disease. 4 biologics, 2 GIs, multiple colonoscopies/endoscopies, countless steroids, 2 remissions later, I still have many of the same symptoms... I am still fighting the same fights. So much feels like insanity: repeating the same thing over and over. But I know more, am stronger in so many ways because I have lived through so much. I'm thankful for the Lord's daily strength, for His faithfulness to me every morning. I trust Him for what lies ahead, and I wake up ready to continue the Crohn's fight.

IBD Looks Like

It's Crohn's & Colitis Awareness Week, and this will be my 13th year to recognize it {my 14th Christmas with Crohn's}. It's wild to think back on those first days of my initial diagnosis and see how far I have come, while also feeling like I am fighting many of the same battles...

This year's theme for Awareness Week is "IBD Looks Like..." Because it doesn't look like just one thing. It's a million little moments, often invisible, that make up a journey of managing this awful and unending disease. While there are certainly struggles and many defeating days, there are also wins and reminders that progress is possible, and I am so grateful for all the grace I have been shown on this journey. 

For me, IBD looks like...

...managing symptoms on a daily basis, whether it's from the disease itself or the side effects from the medications needed to keep the disease at bay. It's settling for the side effects because the disease symptoms are far worse. It's operating at 70% on a "good" day. It's pushing through the pain and discomfort that would bench most people, but you have learned to function in spite of it, because otherwise you would never get out of bed. It's realizing that you are stronger than you think, despite feeling so tired and weak most days, simply because you choose to keep showing up on those hard days.

...always planning around how you feel, having to work around what you eat, how much energy you will expend, where the bathrooms are, etc. It's being hungry, but being too afraid to eat. It's not about your preferences, but about survival for your body and your overall health, because if you don't plan accordingly, it can wreck your whole week {or longer, depending on your choices and the status of your disease}. It's often having to change plans, decline foods, or simply say "no" to the things you love.

...constantly having to advocate for yourself. Whether it's with doctors, insurance companies, or pharmacies, there is always a fight for better care, coverage, or treatment. It's trying to get all of your doctors to talk to one another so you get comprehensive care, and not just a bandaid to treat a symptom. It's spending countless hours on the phone with insurance, fighting to get them to honor coverage for expensive treatments that they don't understand or care to pay for. It's trying to fight for your mental health and keep stress levels minimal through it all. It's hoping that this treatment will be the one that will put you in remission...and that insurance will cover for as long as possible before you have to switch again.

...feeling the defeat of disease, walking the long days of sickness, praying for healing. It's looking "fine," but knowing your body is literally fighting against you. But it's also finally finding a treatment that works, achieving remission, and starting to feel more like yourself again. It's knowing that you will live with this awful disease for the rest of your life, but being thankful for the advances that have already been made in the 13 years since your initial diagnosis. It's feeling the discouragement of chronic disease, but feeling thankful for the support of family, friends and the right medical team. It's knowing that your body is broken, but also being grateful for how the Lord has faithfully walked with you in every aspect of your disease.

...chronic pain. fatigue. inflammation. weight loss. flares. brain fog. joint pain. diarrhea. nausea. hair loss. migraines. doctor appointments. constipation. vitamin deficiencies. colonoscopies. bloodwork. endoscopies. anemia. ulcers. self-injections. insurance denials. a nightstand full of pills/vitamins. knowing where all the bathrooms are wherever you go. loose-fitting clothing to put the least pressure on your gut. having "safe" foods in your bag. living through the flares and fear and fighting through anyway.

Crohn's Chronicles :: Wezlana {Biosimilar}

This week, I took my first dose of the biosimilar. There are currently 7 biosimilars that are approved for Stelara, and I was prescribed Wezlana. 

I had to have a consult with the pharmacist, and he asked me if I was aware that "the biosimilar is the generic for Stelara, so the same as Stelara?" I know he is just doing his job and parroting the lines he is supposed to, but I politely responded by telling him that "I am aware that the biosimilar is similar to Stelara, but not the same, yes." I'm sorry, but I have played this game for too long, and I am being forced onto this medication against my will. 

All of the literature states that biosimilars are similar but not, in fact, the same. By the very nature of how biologics are made, they cannot be exactly the same, and cannot be a generic. They are made with a completely different process. Theoretically, they should be indistinguishable in your body, but there is not a guarantee. Given my history of a biologic failing me, due to a slight change in an additive {see Humira Citrate-Free}, I don't have confidence that any slight differences in the biology of this biosimilar will fair any better for me. And I don't believe an insurance company should get to make the decision, especially in opposition to my doctor. Particularly when my health is stable. {/end soapbox}

I truly hope I am wrong. I am praying for no side effects and continued/preserved remission. The first few days after my initial dose brought irritated bowels, nausea, fatigue, and a massive migraine. I am hoping that it is a temporary reaction to the shot, and that all will balance out in time. I didn't necessarily anticipate an initial reaction, but am keeping an eye for more issues as we head into the new year. I started seeing flares around the 3 to 4 month mark after the change in Humira, so we shall see where I am at in a few months.  I am thankful that I will get to check in with my neurologist in November and my GI in December.

Now I have to wait and trust and let go. I can't control any of what has happened or what will come, and I have to rest in the Lord's care for me. He is is in control, and I have to let Him fight my battles for me. I will be honest, that's going to be so hard and infuriating if I am proved right. If a few months from now, I start flaring, just like I am predicting. But even if that happens, I have to trust that the Lord is still sovereign and good. And I have to walk this path forward, trying to surrender to the outcome, good or bad, expected or not. He has always been good and kind, and I know He will be again.

Crohn's Chronicles :: When Insurance Fails

Back in August, I talked about my battles with the insurance over my Crohn's medication. When I received the letter that they were no longer going to cover it, that they were pushing me to the biosimilar, I was advised to contact my doctor as soon as possible to see if there was a less expensive medication to be prescribed. If my doctor wanted me to stay on my current medication, I could submit an appeal and fight.

I chose to fight.

In the 13 years I have been taking biologics and dealing with insurance companies, I am more than familiar with the game they play, the time it takes to walk through these processes. And because of the timeline I face to keep continuity in my treatment, I didn't waste any time in contacting my doctor and getting the ball rolling. I had already had the initial conversation with him about the biosimilars, because I was aware this letter was inevitably coming. So when it came, I was ready to respond. 

My doctor went through the appeal process, and miracle upon miracle, I received my approval! The medical director overturned the initial denial and authorized coverage for my medication through August of 2026. I was beyond thankful, and was relieved to move forward. I was able to fill my medication without any issues in September, and I thought I was set until next year.

In late September, I received a phone call from the pharmacy, informing me that I would not be able to fill my medication in October, but would instead be receiving the biosimilar. I figured it was an error, that they just didn't have the updated information, but asked how I could verify it. I was told I would have to wait until it was actually time to fill my prescription {in another couple of weeks}, in order to trigger the claim with the insurance. I thanked her, still thinking she was misinformed, but still called my insurance to verify they still had my approval in place. They told me they did, so I didn't worry about it.

Fast forward to October's refill, and of course, I was unable to get my medication. They refused to fill it because they insisted the formulary changed on September 1st, my approval was no longer valid, and that I was now required to take the biosimilar. I looped the insurance company in, which started a long and frustrating back-and-forth with wrong/misinformation, empty promises, lack of call backs, etc. 

One rep told me I needed 2 prior authorizations {wrong}.

The next rep hung up on me {rude}.

Another rep escalated it to the "back office" and promised I would receive a call back in 3 business days {I did not}.

When I followed back up, I finally received acknowledgement that I had a prior authorization in place and that I should not be having issues {thank you!} and that a supervisor would get it sorted with the pharmacy. I would receive a confirmation email the next day and would be able to fill my prescription then {lies}. This was when I first posed the question on whether I was facing issues because my prior authorization was dated the end of August, and the formulary changed September 1st, but reminded the rep that the whole reason my doctor went through the appeal process to begin with was because the September 1st change was coming.

When the supervisor emailed me back the next day, she informed me that things were not, in fact, sorted, that my prior authorization/approval was invalid, and that I would have to take the biosimilar. She cited the September 1st formulary change, essentially saying they were not going to honor my approval and I was out of luck. When I inquired further about my doctor's intent to address that September 1st change, she never responded back.

The final person I talked with got so far as to tell me she just needed to apply a code to get me my medication, but it was going to take up to 10 business days to take effect. I told her I didn't have 10 business days {I was due for my next dose}, and more importantly, I had been down this road before. What would happen if I got to the end of 10 business days and they came back with the same response as the supervisor from the day before? She did more digging and came back with the final answer and acknowledgement: they were absolutely NOT going to cover my medication, yes I was, in fact, being punished for being proactive, and I could file a complaint with the Virginia Bureau of Insurance in an attempt to compel them to honor my original approval. 

When I called the Virginia Bureau of Insurance to get more information about the process, I learned that it would take 30-45 days for a resolution, and that most of the information would be gathered from the insurance company. I didn't walk away from that conversation feeling confident they were truly going to be advocating for me. I haven't fully decided whether or not I am going to file a complaint; I may still. But I can't wait 6 weeks for a decision, only to be in the same place {and then also having skipped treatments in the meantime}. 

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This truly is a David and Goliath situation, and unfortunately Goliath wins here. My hands are tied. I have fought as hard as I can, within the bounds of my situation and reason. The right thing would be to allow patients who are in remission to continue on Stelara, until there is a change in their health status. Then move them onto the biosimilar. To move Crohn's patients who are starting treatment onto the biosimilar, not ones who are in the middle of current effective treatment. But the insurance company is not interested in what is right. They are interested in money alone. The insurance company gets to make decisions regarding my health, regardless of what my doctor says. It doesn't matter that I am in remission, it doesn't matter that my treatment is working, and that the science says that Crohn's patients shouldn't have disruption in their treatment. It doesn't matter that I have a history of issues with a change in formulary with a biologic. 

I have had my time to rant and rave and scream at all of the injustices over this. This is not the outcome I hoped for. I am super nervous about moving to the biosimilar. But the Lord is faithful, and I know that He will take care of me, whatever comes next. 

Crohn's Chronicles :: Insurance Battles

I have been immensely blessed to have health insurance throughout my Crohn's journey. The medical care needed to manage a chronic disease is endless, and the medications to treat my disease are exorbitantly expensive. So I am thankful to have access to the care I have needed over the years.

But it hasn't always been easy. More often than not, it has been a fight to get insurance to cover my medicine. I understand that they are expensive; but there simply have not been many options. When I was first diagnosed, there were only 3 biologics on the market; one wasn't really an IBD drug {Remicade}. Over the past decade, more options have become available, but nothing more affordable. 

Over the years, I have spent A LOT of time on the phone with insurance companies, HR departments, doctors' offices, and pharmacies. In an attempt to get coverage, to get the entities to talk with one another, in an attempt to explain to each what is actually needed. There is so much misinformation, and it's so disheartening, considering they often get to make final decisions regarding my health. I have had some defeats, many wins, but the Lord has always been gracious to provide for my Crohn's care.

This past year, many of the patents on the biologic medications expired, which opened the door for biosimilars. In the simplest of terms, it's like a generic in the biologic world, though it's not quite the same. Because of how biologics and biosimilars are made {and approved by the FDA}, biosimilars only have to be, well, similar, not identical. Which can make a difference in the efficacy of the medication, particularly for a patient who has already been taking the original biologic. Because any change in the formula can make a difference. 

{Case in point: I took my last Humira shot with citrate in April of 2019. My symptoms returned within 6 months, and I was out of remission, confirmed by colonoscopy by June of 2020. The drug companies can argue all day long that the citrate made no difference. But that one alteration in the makeup of that biologic made ALL the difference in my body. And I will never be convinced otherwise. I have regretted that decision every day since.}

So instead of allowing continuity of care, particularly for patients who have achieved and proven remission, they're forcing ALL patients to the biosimilars at an arbitrary date, in the middle of their care. I tried really hard not to be angry or cynical about the whole thing, but mostly I just feel tired. Tired of paying high premiums, only to be denied care. Tired of non-GI insurance "doctors" making decisions about my health. Tired of fighting, tired of being sick, tired of having to fight while sick. 

After many messages and phone calls between my doctor's office, my insurance company, and the pharmacy, I am tired and frustrated. It has been hard to see a way forward. My heart has actually been prepping for the worst. I don't want to be defeatist, but I have had this disease and taken these medications for too long to not understand the reality of what I could be facing. I want to have faith that all will be well. That somehow, miraculously, the insurance company will grow a heart and cover my medication {they denied my first appeal, so we are continuing the fight}. That even if they choose not to cover it, moving to the biosimilar will be fine! That I won't have any side effects. I won't lose my hair again, like I have every time I start a new biologic. It won't disrupt my carefully-crafted migraine treatment. It won't throw me into a flare. I won't be out of remission next year...

But even in my frustration and fear of what could lie ahead, I still {shakily} choose to trust the Lord. I have to. He knew this was coming. The same way He knew my initial diagnosis was coming. How I would have to learn to live with this awful disease. The same way He knew when Humira was going to stop working. That it would take 3 long years to get back into remission. And He walked with me every step of the way through all of it. He never left, and He has provided everything I have needed along the way. And while I was frustrated every time then because I just wanted ________ {X medication, X side effects to go away, my health, remission, etc.}, He was lovingly and patiently showing me more of Himself. Making me slow down, spend more time on things that mattered. Making me long more for Him and heaven. 

I'm thankful for a GI doctor who does the research and understands my personal care, and does not automatically jump to switch me to the biosimilar, dismissing my concerns. I'm thankful that he is willing to fight the insurance company with me, going to bat for me every year to get the medicine I need. I'm thankful for the many, many years of remission I have experienced in my total years of disease. I'm thankful for a husband who takes care of me and works hard to ensure that I can rest and take care of myself in the way I need to, so that I can be as healthy as I can be. 

And I'm thankful for the Psalms and the ability to express the frustrations, while still pointing me back to the Lord:

"How long, O Lord? Will you forget me forever?

How long will you hide your face from me?

How long must I take counsel in my soul

and have sorrow in my heart all the day?

How long shall my enemy be exalted over me?

But I have trusted in your steadfast love;

my heart shall rejoice in your salvation.

I will sing to the Lord,

because he has dealt bountifully with me."

- Psalm 13:1-2, 5-6

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 :: Shingles

I recently posted about some of my health stuff, and I have had some updates. There is a reason this is a chronic illness and it is considered a health journey. Because there is always something, and it's never settled. So I take a deep breathe and get ready for the next round of whatever comes next. And while that can be overwhelming and frustrating at times, I am thankful the Lord walks with me in every part of the journey.

MR Enterography Results

Even though all of my blood test inflammation markers from earlier in the month were within normal range, the MRE showed mild active inflammation at the terminal ileum. In other words, my Crohn's is likely active again. There was a mild luminal narrowing noted {most likely caused by scarring, which we were aware of}, but the good news is that my bowel is not obstructed.

The MRE also showed small benign hepatic cysts, as well as a gallbladder polyp. My GI wasn't concerned about these, and they are consistent with abnormal growths that I tend to have within my body. {Isn't that lovely?}

I will need a colonoscopy so that my GI can further evaluate and take biopsies at the inflammation site. It will be interesting to see if he can even reach the site to biopsy, because he wasn't able to last time, due to the scarring. My hope is that, because the inflammation is milder this time, that will allow easier access.

Sigh. Definitely wasn't expecting that. It brings up SO many questions, but I am trying not to let my mind run ahead until we have more information. 

And so much for avoiding a colonoscopy haha!

6-Month Skin Check + Shingles

I had my normal skin check last week, and thankfully all looked good from that. But a week prior to that appointment, I had an itchy spot on my back. I had just assumed it was an intense bug bite. When the dermatologist asked about it, I told him just that, but he said that no, it was Shingles {!} He asked if I had had any recent stress {ha!}, which is what probably brought it on. I am so thankful I had this appointment already scheduled, because I would have just ignored the spot, still thinking it was a bug bite. So we caught it early, and I was able to start an anti-viral {Valtrex} right away.

When I first started the Valtrex, my ears were clogged for several days, and it kind of felt like I was in a tunnel {super strange}. It also has not been kind to my GI system. It has caused off and on dizziness and my insides have not been happy all week. But the worst part is that I had to stop taking my Stelara. I was due for my shot the day I was diagnosed with Shingles, and I was not able to take it. My GI wants me to wait until I am cleared of the Shingles before I resume taking Stelara. Both medications suppress the immune system, so taking them at the same time would significantly increase my risk of developing serious infections. It would be very difficult for me to beat Shingles if I continue taking Stelara. I hate missing doses, especially knowing that I have active inflammation right now, but I need to get rid of the Shingles.

I followed up with my GP yesterday, and unfortunately, it's not clearing up in the way they would hope. Thankfully, it's not getting worse or spreading, which is a huge praise. And I am incredibly lucky that I am not experiencing any pain. But even though I stopped taking the Stelara, I am still immunosuppressed, so it's likely taking my body more effort to fight off the Shingles. So she extended my treatment, and I will go back next week to see if there's any more improvement.

In the meantime, I will fight through another week of feeling yucky and praying that the Shingles starts to heal so I can avoid another extension and get back on my Stelara treatment.

We're just going ALL IN on this old lady thing, huh? ;)

 

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. 

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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! :)

{iPhone Rewind} :: December

Bible study leader fellowship- so thankful I get to serve alongside these ladies!

Mike took Maddie to Pioneer Girls, so I got a night with the boys. They chose watching How the Grinch Stole Christmas and building robots!

Granny had left us 5 Christmas presents to open in December, and we were so excited to find Christmas mugs with our names on them! Perfect for hot chocolate :)

This girlie LOVES meats haha {and writing about it}

Aiden said wistfully, "I wish I had this much money..." One day, buddy. One day.

**The rest of the photos in December are marked with the loss of my brother. I still haven't quite figured out if or when or how I will blog about this time, but I do know that there are ways the Lord took care of us that I do not want to forget. So for now, I will put some photos of family and the kids here.**

I am SO PROUD of these 3. They are such troopers, and they did so great with all the last minute travel. And I can't tell you how many people were shocked that Mike was handling all 3 by himself {it actually started to annoy me}. I had zero worries, because I knew he would do just fine {if not better than I could}. And he did. 

Sweet cousins who had matching Christmas pajamas and cookie decorating waiting for our kids when they got off the plane in Texas.

Sweet Airalyn turned 13 the day Michael went into the hospital, so we wanted to be sure to find a time to still celebrate her. She LOVES claw machines, so we spent the afternoon at ClawZania!

In all the last minute rush, Maddie ended up in Texas without pajamas! And even when I was going through all the clothes, I missed it completely as well, so poor girl had to wear her brother's shirt. She was a good sport, and Aiden was ok with it...only because it wasn't garbage day ;)

My kids have brought so much laughter and joy to a hard few weeks, but they have also brought their love and gentleness. I have been amazed at their sensitivity and how they have cared for the adults with their love and hugs.

We have received an outpouring of love and support from our own church family, even while we were in Texas. But when we arrived home, there was more waiting for us. From meals and cards to flowers and love gifts for flights, we have been overwhelmed by the body of Christ and its care for us. 

The normal Christmas activities we had planned didn't happen in the same way, but we still made a little time to do a few things for the kids. On the morning of Christmas Eve, we let them paint some Christmas ornaments.

Living their best Christmas Eve life :)

A hawk came to visit us on Christmas!

We had 2 down sick the day after Christmas...

Eli helped Mike up at the church, and he was so proud of his work :)

This is the medication insert for my Stelara. Granted, a lot of it is directions for use. But there are a lot of fine print warnings too. It's just a lot of small print, front and back. I just try not to think too much about it...

The last few days of the year have been pretty rough. Mike was pretty much the only one left standing, and we have seen who is a good sick person and who...definitely is not haha.

{iPhone Rewind} :: November

I sure do love this tree. I don't love how many leaves it drops in the fall, but I love how beautiful it is when it changes colors...

Maddie was so excited to build her little bunny garden night light

Got to attend the DTS Centennial Celebration dinner at the Museum of the Bible with some CBC people

Maddie's cute little poem

We have had a couple of squirrels who enjoyed the pumpkins we put out on the front porch. It's a good thing they were free, and we were not hoping to keep them for the season!

I got a fun surprise in the mail from Laura! She sent a box full of fun goodies, a "Survival Kit for Ministry Wives." It was a sweet and thoughtful gift that came right at the perfect time.

Playing chess with Daddy :)

A quick lunch trip to McDonald's

Second grade phonetic spelling is the best :)

Hit my deductible {plan year started Nov 1}. And this medication is actually more expensive, I just have already had a couple of doctor appointments this month that ate up part of my deductible. I am so thankful for insurance, but this is criminal. This is ONE dose. I need one dose every 4 weeks.

We celebrated Mike's birthday with homemade cards, enchiladas, salsa, and chocolate cake!

The day after Thanksgiving, we got all the Christmas decorations up!