If there is one thing I’m known for it’s oversharing. It’s always been a natural part of my personality for as long as I can remember. It’s just who I am and part of what makes me me. When I started blogging that oversharing element of myself created a desire to be fully transparent in the things I share. I share my raw emotions, “tmi moments”, and that has continued to be the case for over a decade now.
A beautiful piece of this online journal space of mine is that my being so open about all the things has, at times, also been helpful to others. Others may feel like they are the only ones struggling in areas, or want more detailed “real life” information about things than you can typically find in a quick google search.
When we began Zach’s health journey with Multiple Sclerosis, we had no idea he even HAD Multiple Sclerosis. I used this blog as a place to share my feelings. Writing is therapy for me. It helps me to process things by getting them out and then posting them helps me to also feel like maybe my experiences are helping others too.
—–> You can read all of my posts about Multiple Sclerosis here.
When we were in the scary waiting stage of the journey we could FEEL the prayers coming from so many and we are forever grateful for those who followed that experience and lifted us in prayer throughout it. Even though we got the worst-case scenario news in Zach’s diagnosis, we continue to find blessings. We are so grateful that his MS was caught early, that we live so close to such a wonderful center that specializes in MS, that there are awesome medicines now available to help prevent progression, and that the outlook for Zach’s health has always been so positive.
Even though I feel passionately about being fully transparent and open, there are often things that can’t be shared or shouldn’t be shared or that just need to stay private for a time. From August 2021 – February 2022 we faced the most difficult period thus far in Zach’s health journey with MS. Even in this tougher time though we were still so blessed and know SO many patients with MS face much, much worse. If this is the worst we ever have it, we will be beyond grateful!
It was hard to not be able to share what we were experiencing. I felt more withdrawn and struggled with not being able to write and get those feelings out during that time period. But through that experience, it also opened Zach and me up to lean on each other in a beautiful, wonderful way. In choosing to keep the experience between us and our little family, Zach and I were more emotionally connected than we’ve ever been in our marriage. It molded us and shaped us in ways I don’t know would have been possible if we hadn’t had this experience.
I’m sharing now because we are through that tough time. We are on the other side of it and being on this side I want to make sure we ALWAYS remember what those tougher times were like. It’s allowed us to better appreciate the good days, be more grateful to God for them, be reminded that the disease he has is REAL, and better prepare for what tougher days may potentially lay ahead, and I hope will help encourage others who may face similar paths.
Zach receives infusions every 6 months at Shepard Center in Atlanta. He is on Ocrevus (you may see the commercials on tv!) and the infusion helps to minimize MS symptoms as well as prevent future episodes. At the last update I talked about how he’d been doing so well that they actually made the decision to cut his visits in half. He no longer needed to go up to Atlanta 4 times a year and instead can just go twice and have his MRI taken at his 6-month visit.
From my last update in May 2020 up until August 2021 nothing had changed about Zach’s health or his treatment plan. In August 2021 Zach noticed more symptoms and just wasn’t feeling as well as usual. We had concerns regarding his medicine “wearing-off” faster. His mom has rheumatoid arthritis and her immune system is SO strong that it even fights off her medicine. This has been in the back of our minds since Zach’s diagnosis. Will his meds always work? Will his body fight them off?
Labs came back showing that his B cells are regenerating faster than what is ideal with Ocrevus. This was very concerning for US because our minds instantly jumped to Mrs. Charlotte. Does that mean his meds will stop working eventually? Does it mean he’ll run out of medicine options? That his body will fight everything off and his progression will be no longer manageable or even unstoppable?
When he went into his appointment in September we were anxious. Usually, it’s all just a routine thing, but August had been a tougher month than he’s typically used to symptom-wise. Typically leading up to his infusion he can tell it’s time for it. He struggles with sleep, maybe a bit more easily aggravated, and will sometimes have tummy issues (a frequent queasy feeling). August was heightened with those symptoms and he felt them earlier than normal as well.
I did not attend the appointment with him in September for his infusion. I do like to go with him but with Covid they are only wanting patients in the building, which is understandable. It is also easier for Zach to go solo so we don’t have to arrange childcare and he’s often able to combine the trip with work too!
When he went to the appointment in September his dr, who we trust completely, explained that YES his B cells are regenerating faster but that it DOES NOT mean he’s more likely to experience episodes. We learned that basically Multiple Sclerosis has two parts: episodes and symptoms.
The episodes are the big bad scary things. Zach has had one episode that we know of and during that episode, he couldn’t see out of one of his eyes. Thankfully once the episode ended, his vision was restored. (This event is what led to the testing that got us to diagnosis)
Episodes cause permanent lesions on the brain and can also cause permanent damage as well. Episodes result in the things you hear about when you hear about MS. Mobility issues, vision issues, speech issues motor skill issues, etc. During an episode, these things can occur and can go away after or can become permanent.
Symptoms are the less scary things. Still sucky, but less scary. Not permanent. Symptoms are a side effect of having MS. Like Zach’s only major symptoms he typically faces are sleep issues and stomach queasiness (sometimes it can be a messed up stomach but usually it’s just discomfort that feels like it’s going to be upset but doesn’t actually get upset). Both of these are very common among MS patients. Some patients have issues with heat (thankfully Zach doesn’t, especially since we live in South Georgia). Other symptoms may include things like tingling, brain fog, bladder issues, forgetfulness, etc.
His doctor explained that his medicine’s job is to prevent episodes. It’s like when you have strep throat and you take an antibiotic. The antibiotic may also help lessen your throat hurting but its main job is to fight the infection. You take ibuprofen for the symptom of the sore throat, you take antibiotics to fight the infection. The every 6 months medicine is like an antibiotic. Its job is to prevent further episodes.
The medicine also helps some with symptoms, but that’s not its main purpose. SO basically what we learned is that the Ocrevus is still doing its main job. It’s still preventing episodes. But it is not helping him for the full six months in keeping his symptoms from occurring.
That’s GREAT news in regards to our biggest fears of his medicine eventually stopping working for him. She reassured him that she still feels JUST as confident as she always has that he will remain episode free. However, because his B cells are regenerating quicker it means he will have a higher chance of symptoms sooner.
While some of the symptoms of MS aren’t things any of us would choose to experience, they are manageable. There are other medicines he could take as needed to help with those symptoms.
For example, he often takes melatonin (this is the one that works the best for him if you’re on the hunt!) to help with sleep and his doctor has offered more sleep aid medications if he needs to try that route as well (Zach’s goal is to be on as little medicine as possible since he already is on such a mega-dose of meds in his bloodstream with the infusion). So far, he’s able to pretty much manage the symptoms on his own.
Ocrevus is an FDA-approved drug. While there are many positive aspects of it being FDA approved, one of the negatives is that there are lots of rules and guidelines the doctors have to follow for treatment plans. Including the frequency of the patient infusions. Zach has always gotten his infusion every 6 months and naturally, if it isn’t helping with his symptoms for the full 6 months we’d prefer him to receive it more often. Unfortunately the most frequently they are able to give him an infusion is every 5 months.
He is now able to receive Ocrevus every 5 months instead of every 6. Since his symptoms worsened in August, which was his 5 month marker, the hope is that getting his medicine a month earlier will help in keeping those symptoms at bay. However, if his B cells do regenerate even quicker and he starts showing symptoms at 4 months from his infusion, they will not be able to give him his infusion any earlier than the 5 months.
His doctor feels confident that the move to 5 months will be sufficient. That he won’t struggle with symptoms earlier and that he will be able to continue with his same quality of life long-term while remaining on Ocrevus.
IF that isn’t the case, and his symptoms do worsen prior to 5 months then we’ll have to discuss options at that time including possibly changing treatment plans, etc. Thankfully the medical world of Multiple Sclerosis continues to have SO MANY advancements. So when/if that day comes we are hopeful there will be great options available for him. We pray that day never comes as remaining steady on the same medicine in his system is ideal (changing it up can raise the likeliness of episodes, the scarier stuff, and Ocrevus is THE most trusted/least side-effects/longest tested medicine on the market – basically it’s the best there is and we wanna stick with the BEST!).
So the visit was semi-bad news but not horrible. Like that’s all stuff we can digest and accept and see the blessings in!
But then. Then she hit him with news that was EXTREMELY frustrating. Due to Covid 19 the decision was made to only administer HALF DOSES to Ocrevus patients. So basically in the same breath that they told my husband his medicine isn’t helping with his symptoms for the full dose for the full length of time and that they can’t give him the medicine any earlier than 5 months between doses…they also tell him “oh by the way and this visit – we’re only giving you HALF THE DOSE and it has to last you a full 5 months.”
We. Were. Livid.
We had no say. No choice. Basically, they were putting Covid concerns over his long-term health concerns. Even when he told them, very clearly, that he’d rather take his chances with Covid than risk LONG TERM HEALTH CONCERNS WITH HIS BRAIN they did not allow him to receive his full dose.
Their reasoning was something about the full dose of meds causing the immune system to be so weak that it was more susceptible to Covid. I understand and appreciate them doing their best during the crazy times. And I understand this was a concern for MANY of their patients.
MS patients tend to be in less than ideal overall health which would make them more likely to have a difficult time battling Covid and put them in a higher risk category. I get that. I really do. But Zach is not the typical MS patient. He IS healthy overall. It is much more vital to US to preserve his BRAIN and the potential long-term impact that lessening his medicine could have on his long-term quality and length of life than it is to be concerned with Covid. My personal opinion is that a medical professional should do what is best for each individual patient, not make a blanket decision that impacts every patient across the board, regardless if it’s what is truly best for their individual situation.
And that half dose? It. Didn’t. Do. Crap.
Basically it was as if Zach didn’t have any of it at all in regards to his symptoms. He started having MS side effects within 6 weeks of receiving the half dose.
I discussed back when Zach was diagnosed that I had a harder time than he did with the diagnosis. I struggled badly with feeling all the feelings. Disbelief. Fear. Grieving the life I thought we’d share together. I will never forget us getting in the car after that dr appointment when they told us he had MS and he said he was FINE. That we’d do all the things we needed to do and that would be that!
This news though? This half dose decision that was out of his hands and out of his control? This news that his medicine wouldn’t just take care of ALL the MS umbrella of concerns forever? This was like he was getting diagnosed all over again for himself. It was this reality moment of truly recognizing “I have MS.”
I’m not saying he was in denial this entire time until now, but he trusted his drs and he trusted the medicine and the game plan and trusted that God had it handled and up until now he didn’t need to doubt any of that! But the doctor’s decision made him lose some of his trust in them and the news that the medicine was wearing off from helping with the symptoms made him lose some of his trust in the medicine too.
He came home and it was a different ballgame. We had so many wonderful, vulnerable discussions. It is such a blessing that we both experienced these emotions at different times. I felt it all at that initial diagnosis and he experienced it more at the half dose appointment. I think it really allowed us to both be there for each other when we each needed it more so than if we both had the same reactions to the news at the same times.
Zach made the decision to keep this news between us and it was tough for me to be on board with that. I felt guilty for not telling his parents. Not telling my friends. Not sharing openly. But Zach didn’t want anyone worrying about him. His mom has enough with her own health and he didn’t want her worrying about him too. He also didn’t want to dwell on things. He doesn’t like to talk about his health. Zach never ever wants to be known as “the guy with MS.” It’s something he HAS not WHO he is. He doesn’t like any sort of attention or worrying or anything like that towards him.
I tried very hard to show up for him in the ways he needed me. It was hard for me not to constantly ask him how he was feeling or how he was doing. We made a deal that I wouldn’t be annoying as long as he promised to always tell me everything!
Those 5 months were tough but also wonderful. We connected in a deeper way than we have before. I felt so close to him and so honored that I get to walk beside him through all of this. When we get married we promise for better or worse and it’s a beautiful thing to get to join together through those worse kinda times.
Not only did it bring Zach and I closer to each other but it deepened our faith and appreciation for the blessings God has given us. It helps us remember that it’s HIM, not US. That the medicine and doctors aren’t where our faith lie. That we trust HIM and know we will be okay no matter what the future may hold.
It was hard not to let Satan fill us with fear. I always say the hardest part of any journey is the waiting stage. I can handle bad news, I struggle the most in the time before you get the news. The unknowns. And this was 5 months of unknowns. Five months of worrying if his brain was having damage done without the full dose of meds. Five months of walking on egg shells wondering what symptom he’d deal with next.
MS is a total crap shoot disease. It’s your BRAIN. So it’s completely and totally random and unpredictable. We focused on our faith. The faith is always in those waits. And we fought Satan and the fears and “what ifs” and focused on controlling what we could control and trusting that His will will be done and that we would continue to find the blessings in whatever His will may be.
Satan tried to attack but God continued to bless us so much during that time period. I’m sure Zach has his own examples of ways God provided him with comfort and covered him in love but I can only speak on my own personal experiences and want to always remember them 🙂 I think it’s so important to write out the times when we see God’s hand at work!
We had just joined a new church (a total God-thing for sure too as we are exactly where we are meant to be!) and I made a new friend who understands this sort of path as her own husband had a terrible injury early in their marriage that causes him constant pain. It blessed her to be able to use her experience to help me in ours. I cannot fathom how I would have navigated that time period without her beside me through it. She has such awesome wisdom and insight and life-giving advice. She came to my house and sat on my couch and said “we’re going to work through all of this” and we talked through every detail of the now and the future and her friendship was (and continues to be) such a big blessing in my life. It’s crazy because I met her almost 15 years ago and always thought we could be friends, but God was saving that friendship for just the right time in my life.
I also had a moment where God really showed up big time for me during this season when my Dad called me out of the blue (a very rare occurrence) and I was struggling and when I answered the phone I just broke DOWN. I spilled my guts about everything I was feeling. All my fears and concerns. Every detail. I cried and cried and my dad just poured into me in exactly the way I was needing. He said ALL the right things. He told me how strong Zach is. How strong I am. How I had this. It’d be okay. We’d be okay. He told me that I had great plans in motion for the future but to also make sure I was thinking about the NOW and to make investments into helping Zach’s health where it was currently at (we literally bought a new mattress that week after that phone call). He even said “I know what you’re going to say – this was a God thing” and he was right, it really was. When we hung up the phone it was all just perfect timing where I had about 10 min before the kids got off the bus and I just fell to my knees in thankfulness to the Lord at that moment.
It also brought us closer as a family unit. We had more conversations with the kids about MS. Prayed more with them about Zach’s health. It’s important for them to know an age-appropriate amount about his disease and that they feel comfortable asking questions. It’s helped us come closer as a family!
We started doing some things differently as our family, looking at the world through a different lens and making adjustments to best suit all of us. Having a friend who had to do similar things in adjusting their lives was huge in advising me with practical life advice. Simple things like taking two cars on Disney trips so if Zach got to where he wasn’t feeling great or just needed a break he didn’t feel like he was ruining the day for the rest of us – he could just hop in his car and head back to the house to hang out while we finished up at the parks. It sounds like such a small thing to drive two vehicles but it truly has helped us all enjoy our Disney days more!
I’m so thankful to Zach for handling his health the way he does. So often men tend to not take as good of care of themselves as they need to, but Zach doesn’t play around when it comes to his health. He always shared with me anytime he was feeling symptomatic or had an experience that could even be a symptom.
He also called his dr during any of those times. I especially wanted them to have a record of every little thing that occurred due to their decision to administer half the dose. I wanted to make sure they KNEW what a poor decision that was for their patient!
In regards to symptoms he had a good bit of stomach pain (worse than the typical queasy feeling he gets), he had a few piercing headaches, he mentioned being exhausted in a different kinda way, and a few times he was exhausted to the point of needing to rest/unable to push through.
The main symptom was forgetfulness! I always felt so bad because he’d forget something and I’d be initially frustrated and have to remind myself that it was a symptom. Short-term memory was the worst, one day after church he said he was going to bring the crockpot in from the trunk and completely forgot. Lots of little things like that frequently.
I want to especially give HUGE props to Zach for how little all of this impacted his mood. As his wife who loves him for HIM the potential for MS to impact his personality is the thing I honestly worry about the most. Physical stuff we can figure out, but it would be so hard to work through personality changes that he may not even be aware he’s experiencing.
At one point during the 5 months, he asked me if I’d noticed him being easily aggravated and I had a breakdown moment because it was just so huge that he recognizes it can happen and is aware and is trying SO hard to not experience it. I know it was not easy for him, especially during this time period, but he strived to make sure he was doing all he could to keep showing up for our family in a non-irritated way. (Hard to do on a normal day with four kids and the busy rush of life…let alone when you have a disease attacking your brain right?)
One of the scariest symptoms he did experience was the brain fog. He was leading Lord’s Table at church and later told me his thoughts were murky. Like he couldn’t put them together. Again, so thankful he took it seriously, he went to the back at church to rest and then called his dr immediately after services.
We just never knew if a symptom was JUST a symptom or if it was a sign of an episode. Would half the dose still work in preventing episodes?!?! So when he had the murky thoughts issue we both were concerned that it could be an episode on the verge of occurring.
Thankfully in those times, or if symptoms get really bad, they can prescribe steroids (prednisone) to help. He got prednisone once during the 5 month period, it was after the murky thoughts incident and it helped to almost “reset” his symptoms. It was in December so it was nice timing as far as having the busy Christmas season and allowing Zach to feel good during that!
The entire 5 months were just like a new adjustment. When he first got diagnosed we had to adjust to a new normal and the 5-month half dose period was another adjustment period into a temporary normal. One thing he didn’t experience too much of was sleep struggles! We made the move to invest in a new mattress and it was a game-changer for him with sleep 🙂
It was a wake up call to us both not to just rely on the medicine and expect the future to always look like the present. We made more plans for the future and discussed realistically what it could look like. What if this half dose does cause damage to his brain? What if episodes do start occurring? What if progression of the disease does occur at some point?
I’m so proud of Zach and how seriously he has taken all of this. I know I already said that, but I’ll keep saying it again and again. This time period deepened my love for him in so many ways. It showed me how much I can trust him to take care of himself and to be honest and open with me too. He looks at life a little differently now and has stepped up his game in self-care and is controlling the controllables in this disease.
The biggest thing his doctor told him aside from eating healthy, getting plenty of sleep, and exercising is to manage stress. Stress is a HUGE thing for us ALL right?? But it can especially be an issue with MS patients and can make ALL of those symptoms worse. So that’s been a big focus for us.
I tend to be an easily stressed out person so I have really been focusing on managing my OWN stress as I know when I’m stressed it causes him stress and the goal is to lessen ALL of our stress 😉 I’ve been hardcore looking for all the ways (little and big) to lower stress levels for myself, him, and our family unit. Focus on JOY and FUN and set up as much white space on our plates as we can to enjoy life together!
Zach had his 5 month appointment scheduled in February and the weekend prior Mrs Charlotte and I drove to Columbus together for Kye’s archery tournament. I asked Zach if I could talk to her about his health on the drive as it was the perfect opportunity to do so. I felt SO MUCH relief being able to talk to her about it and I know as a mama she felt good to getting to KNOW about it. The timing was perfect and she was so understanding about the reasons Zach had for not wanting to tell people. As someone who has her own health issues she gets it not wanting to worry others and understood it was out of his love for her that he didn’t want to cause her worry!
She’s been awesome too in team minimize Zach’s stress and this situation has helped their bond as well. Another blessing to add to the list 😉
At Zach’s appointment in February we were BEYOND thankful that he was able to receive the FULL DOSE. His doctor basically admitted that they just were doing what they thought was best at the time with Covid concerns but that it wasn’t the right move. They were apologetic which really did make a big impact on Zach and that relationship for him. We get it, this pandemic is a first time experience for everyone and everyone is just doing their best with what they can.
It def helped us not to be as angry anymore when he got the MRI results and HE HAD NO PROGRESSION. I know I was def holding my breath during that 5 month period with concerns over if he’d have new brain lesions or any progression of the disease and thankfully his MRI showed the exact same results as the MRI he’d had prior to the half dose.
Whew.
So that’s why I’m now able to write all of this without tears in my eyes and without fear in my heart. We made it through a tough time period with some scary moments but now we’re back on track. We’re able to look back at that time and see the blessings in it. We continue to be blessed by our closer bond together and continue to have his health at a more forefront of our minds which is a positive thing! Eating healthy, exercising, getting good sleep, and managing stress are all things even the healthiest of healthy people should focus on!
Yall are reading a WAY different blog post than I would have been able to write while we were in the thick of it. It was much harder in many ways than these words are probably reflecting, but my gratitude for it ending and giving that time and distance from it has allowed me to have a more positive perspective about it. He had his last visit in February 2022 and it’s now almost June 2022. I wanted to give it long enough to know that the full dose is working as it worked prior before I let out that full breath I’d been holding.
A big takeaway for us from this experience was that we especially don’t take his good health for granted. We are so thankful for his medicine in a way I don’t know that we could ever fully appreciate without that time period of the half dose. You can’t fully appreciate some things until they are gone and having that temporary time period of worsened symptoms, concerns about progression, and having to be faced more with his diagnosis really allowed us to appreciate the normal lives we are able to live on a regular basis!
Moving forward his team continues to be just as confident in his quality of life remaining exactly as it is now. It is not common for young, healthy men to be diagnosed with MS in such an early stage. I will always say how blessed we’ve been to catch this so early and to be able to have the outlook we have.
I want to also add that clearly I’m not any sort of medical professional. I’m not writing this post to give any sort of medical advice and am just sharing our personal journey! I may not have all the scientific facts and am farrrrr from any sort of multiple sclerosis expert 🙂