March 2024 - Rini Drinks... mostly coffee...

The best things in life start with C… like Coffee, Cookies, Christmas, Cats, Corrine (hey, that’s me!). Also, Courageous, Caring, Charming or how about Compassion and Charity. Yeah, there’s some pretty cool words that start with the letter C.

But today I want to talk about another C word… Combat. How am I going to combat my MS Diagnosis. First I want to explain my story, my journey. This will be a long post… so, bear with me.

When Things Seemed Wrong:

March 1st, 2023: I was in the backseat of a car somewhere between Florida and Arizona. My Aunt Anita, my mom, and I were driving back from a long emotional trip. It was taxing on my mind, soul and body, so when my toes & feet (in flip-flops) started to feel numb, I just thought I tweaked some nerves or something or maybe didn’t have enough circulation going from being in the car. It stayed that way for the rest of the trip, flying home on March 4th… I’m in my Converse sneakers, and my feet felt kind of separate from my body. I could feel they were there but couldn’t feel the pressure of the ground. Weird, right? But I was emotional, and my brain wasn’t quite registering things were wrong.

*A small fraction of the Konold Family : Florida, February 2023*

When I say things were emotional, they were. In January, I lost my great Aunt Nadine & my “grandpa” Stoneberg within the same week. Those 2 deaths having sparked feelings of generations past and the loss of the eldest generation. For me, realizing the eldest generation was now the generation of my mom, my aunts and my uncles. Then to have my Aunt Cindie pass away a few weeks later, in February, (part of the reason for the trip with my mom and Aunt Anita to Florida was her funeral) and my friend Robin had lost her husband, both deaths happened only 2 days apart. It was rough, and I was trying to grapple with mortality. Scott, Ashlynn, and I had also made the very tough decision to say goodbye to our sweet Shadow cat. She had taken a turn for the worse with her kidney disease, and us giving her daily IVs weren’t working anymore. We made an at home euthanasia appointment for the week after I was to get back from my trip. So when I left for my 12 day trip, I knew there was a possibility that she wouldn’t last until I got back. Yeah, I was a wreck, and my mind wasn’t prioritizing the weirdness of the numbness in my feet.

March 5th, 2023: My birthday! I was preoccupied by the exhaustion of my trip and snuggling Shadow, who had held on but was not doing well. Scott also had planned a low-key awesome birthday movie party for me.

March 6th, 2023: Meow snuggles and birthday dinner with family and friends.

March 9th, 2023: Shadow took her last breath with the 3 of us by her side. Shadow had been fighting stage 3 kidney failure for over a year. We had been giving her fluid every day through IV’s and daily medicine to help her nausea. Towards the end, she was struggling even drinking water or eating food. Her last days, I had been lifting her into the tub for her to try and drink water… it was heartbreaking. I was a wreck leading up to the day, and then afterward, the grief of losing our pet of 14 years was unimaginable and hurt (still does, as the tears roll as I write this). My feet still had little feeling, but I didn’t have the mental capacity to think anything other than… this is weird. It’s amazing how grief can twist around, making you not think of anything else.

*Shadow’s Last Breath*
*All 3 of us with her, giving her love*

March 11th, 2023: Went to my first concert with my feet feeling numb. It was our yearly birthday show, the Young Dubliners, we were hoping for a bit of reprieve from the house that now seemed so empty. Still, I wasn’t thinking about my feet besides the thought of huh, this is weird. I was so focused on my grief that I hadn’t even clued Scott in on this weirdness.

The following week, I got super sick… I’m sure the emotional strain and exhaustion played a huge part in this. During my almost 2 week sickness, my brain started to stray towards the fact that my feet still didn’t have a normal feeling… it wasn’t quite numb but more like a dull feeling. I was thinking… hmmm, maybe I should go in to the doctor after I’m done hacking up a lung with this cold.

But sometime during my cold, all the feeling came back in my feet. “Out of sight, out of mind”. I completely forgot there was anything wrong, and because I hadn’t told anyone about this weird non-feeling, my brain completely blocked out all notions of it.

Fast Forward A Few Months…

May 28th, 2023: (Memorial Day Weekend) We had a couple of pretty busy weeks leading up to the holiday weekend. We had hosted our nephews graduation party the weekend before, which had me in full-on party planning mode. Then, we had a full week of things with plans every night and most days. The Sunday of Memorial weekend was meant to be a down day, but we had friends reach out inviting us to a BBQ festival. Of course we said yes, especially since it was friends we hadn’t seen in ages. Sometime during the walking around at the festival (in my Converse), the dull-numb feeling came back. Again, I thought… huh, weird. Maybe I should stop wearing Converse as I know they aren’t good for my feet.

The following couple weeks, my brain started to give me red flags and warnings of… “Um, Corrine, this isn’t normal.” But you know when you fear or dread something… yeah, that was me and I was avoiding trying to think about it because I was realizing that there had to be something wrong… feet don’t just go numb. I still didn’t say anything to anyone… I was terrified. Scott and I were having fun living life to the fullest as we had become empty-nesters in April, and we were enjoying going out without having parental responsibilities. I even started shopping for our new nightlife, including a couple of epic days of shoe shopping. You know what’s really weird… shoe shopping while your feet are semi numb. I also went to a couple of concerts with my feet numb and in heels too. I still hadn’t said a word… the terror of the unknown had me too scared.

June 10th, 2023: I get sick again… my immune system wrecked from lots of full days and concerts. In all reality, I think my body wanted me to pay attention to the scariness that was happening to my nerves in my feet. During the following week, being uber sick and not doing anything besides rest… I was googling my symptoms… getting more and more nervous… I was convinced I was pre-diabetic as the symptoms fit. I was sick, and nervous about my feet but also really worried that I wouldn’t get over being sick before my planned trip to see my sister the following week.

Saturday, June 17th: I finally told Scott about my feet and we made a plan to go into the doctor on Monday as it’s better to know what is going on than live in fear plus I had a flight on Wednesday so I needed to figure it out soon.

Monday, June 19th: Saw my new primary care who assured me it wasn’t diabetes and that it was vitamin deficiencies causing my nerves to be weird… we did bloodwork. Sure enough, low vitamin D, A, K, and B levels. So I immediately started vitamin supplements on Tuesday and scheduled another visit with her for after the 4th of July holiday. I had an amazing visit with my sister in Minnesota and then came home to have a fun weekend at FanExpo.

**Sister Trip to Minnesota June 21st-26th**

July 6th, 2023: Follow-up appointment/annual physical and more bloodwork. The dull feeling in my feet had spread up my legs a bit, but I was still assured that it was vitamin deficiencies and that it took a few weeks for supplements to work. Plus, I had been on my feet all weekend at FanExpo, so of course my feet would be angry, right? Also, fatigue was heavy… but the same thing, I had just taken a trip, I had walked for 3 days at FanExpo. So, I waited… hoping for results from the supplements.

Mid-July 2023: The numb/dull feeling now was up to my thighs. Shaving my legs in the shower was a strange sensation as I could see that the razor was on my leg but couldn’t feel the pressure of the razor. I reached out to primary care again as the symptoms had progressed, and I was so tired. Like, want to take a nap every day tired. We decide I should see a chiropractor as she thinks there must be a pinched nerve somewhere. I start seeing a chiropractor. The chiropractor does x-rays and sees an abnormal sella turcica size (what houses the pituitary gland) on top of some misalignment with my C3 and C4. He told me the issues with my spinal cord could be contributing factors to my symptoms but would not be the full cause and that the enlarged sella turcica might be something serious and that I should see a specialist. I reached out to my PC, who put in a referral to an endocrinologist… appointment set for August 31st.

I was going to the chiropractor twice a week but not seeing improvement in my loss/lack of feeling. The lack of feeling then started in my fingers… but only in the shower. The lack of feeling had also inched higher, up past my thighs, my pelvis, and even my abdomen. I was having issues deciphering when I needed to go to the bathroom. I was also having weird butterfly twinges when I tilted my neck downwards when sitting… sending my sides into what felt like a spasm. Through all of this, I’m so exhausted that I was resigned to be on the couch in and out of restless sleep, most days taking naps but never feeling rested.

I was doing research into the sella turcica and the pituitary gland. You know how sometimes you see the similarities in things because you want to? Yeah, that was totally me. I thought, this fits. I had issues with my pituitary gland and thyroid when I was 18 and was told that I may have issues when I get older and not to be surprised if I end up hypo or hyper thyroid later in life. It wasn’t checking all the boxes of symptoms, but it came close. But, here I was, in a holding pattern, waiting to see a specialist. I mean, this had to be the right path, right?

August 2023: I reach out to my PC again as my fatigue and symptoms were having me emotionally break down and people around me were thinking I needed other opinions and I was starting to think maybe I needed to see other specialists too. So I asked what she thought about maybe a neurologist consult. I get a referral to a neurologist… it takes a couple of weeks to even get a call back from the neuro office. I finally get an appointment scheduled… for October 12th. But that’s okay as it’s totally something to do with my endocrine system. But here I am a shell of the person I was a few months ago… I’m so frustrated but yet so very fatigued, and my brain kept thinking I am doing everything I should do, following the path of seeing specialists. I am communicating with all the doctors and just am in a holding pattern, right? I was doing more research in my non-nap times, getting more and more afraid… you know what checks all these boxes of symptoms… MS… no, that can’t be it. I kept the MS thought to myself… as if that would make it not be a possibility. But the thought was there… nagging… ever present.

I’m starting to spiral… depression showing its head through my severe fatigue. I’m trying to ignore and failing to see the severity of what is happening to me. I’m scared and worried and my world seems to be crashing from a few different angles. We were still going and doing fun things, but with my tiredness and fatigue, I then needed several days of downtime, sometimes resigning myself to not go out at all.

Scott and I did a tiny road trip up to Wyoming to see Walk Off the Earth and Lindsey Stirling August 25th. I’ll Be There was speaking to me. Between my unknown medical things and some family things that happened a couple of days before we left I had several moments of tears during the concert.

I let Scott know my fears of MS the week before my endocrinologist appointment.

August 31st: I go into the Endocrinologist appointment thinking this was going to solve everything, but yet I had a nagging suspicion that there might be something bigger. It’s going to be fine, I might need to take pills or have shots the rest of my life or maybe a small surgery, but then I’ll be back to normal, right? The first things out of the doctors mouth had me on the verge of tears. There is nothing wrong with my endocrine system. We did bloodwork just to verify, but she was positive that my endocrine system was fine. She then listened to all of it… my symptoms… everything. It was the first time I finally felt like the medical profession actually cared about my past few months. After I (with Scott interjecting here and there) finished with our summary of the past few months… She had a suspicion… as did I. I voiced it first…MS . She said she didn’t want to say anything as it’s not her field, but yes, it does seem to be presenting that way. She apologized that the medical professionals I had seen thus far had ignored the symptoms as a whole. She then wrote orders for MRIs. She was seriously amazing going above and beyond trying to jumpstart me towards a diagnosis.

September 2023: The following week after seeing the endocrinologist was spent trying to get the MRIs covered by insurance. They ultimately were denied for lack of cause as the MRI’s were outside the scope of the endocrinologist. However, going even further above and beyond, she called my PC, saying I needed to be seen ASAP explaining that there is concerning symptoms that could be MS and I should get MRIs. I saw my PC on September 13th. MRIs were then ordered STAT. The weekend after seeing my PC, I started a new symptom… I was having trouble walking. My legs were having trouble finding the strength to hold me up. I was stumbling and my legs were wobbly.

September 18th, 2023: I had MRIs of my brain and neck/spine. By mid-morning, I had a message from my PC saying that it looked like MS and asked when it was that my appointment with neurology was scheduled. She was hesitant to diagnose as typically that diagnosis comes from a neurologist, and she felt she didn’t have enough knowledge in the area . Either way, I needed to see neurologist. Still having a whole month before the neurology appointment, both Scott and I try emailing and calling the neurology office saying I potentially have MS and is it possible to be seen earlier. Scott finally gets a call back. They can fit me in a week earlier with a different doctor who, get this, specializes in MS. Yay! Not that I wanted to confirm a diagnosis like MS, but I also was hopeful that I was headed in the right direction with the right doctor.

My walking was starting to be more wobbly and my balance was getting worse. Side note: I’ve never had good balance, so having even worse balance was challenging. I was struggling to walk up and down the stairs at home. I even started to look into getting a cane.

October 3rd, 2023: I finally see the neurologist. She took some history, looked at my MRIs, watched me walk, and then just like that… I had Multiple Sclerosis. My MRIs showed 3 small lesions on my brain and 2 lesions on my spinal column. The lesions combined with my symptoms, she said, were textbook MS (mostly the spinal column lesions). It’s the spinal column lesions that were the culprit for most, if not all, my symptoms. The terrified feeling came back as I was trying to understand exactly what this meant being sure that it meant I was wheelchair bound and would lose my eyesight. I was trying to hear her as she was saying that an MS diagnosis in recent years is quite different than an MS diagnosis from my childhood. It’s that MS I grew up knowing and remember. My terror was closing in.

You see, I know a version of MS. Having 3 relatives, all of whom succumbed to the cruelness that is MS. I watched as their bodies had them in wheelchairs or blind. I watched as the pain riddled their bodies. That’s the MS I know, that’s the MS I fear. All of them having passed well before their years should have allowed them to. I can’t begin to tell you the horror that I saw as I closed my eyes, imagining the rest of my life. I had plans, we had plans. I know tomorrow is never guaranteed, and you never know the things that could change your life tomorrow, next week, next year, but this… yeah, I had a worst-case scenario playing… roll credits, life over.

Next step bloodwork. She ordered several obscure tests (there were 16 vials of blood taken) for all the tests that would tell her the antibodies I already had in my system before we could discuss the best courses of treatment. Which, I was assured there were several options that had great potential to slow the progression of the incurable disease I now had. I was told that it would take a couple of weeks for the tests to come back and to make a follow-up appointment once the results were back so we could talk about the next steps. She also had written orders for me to start physical therapy to help with my gait and balance.

I totally thought I kept it together for a couple days… even consoling family as the calls started happening. Not just trying to convince them but myself that it would be okay. I would be okay. But the terror was there… edging, pushing.

The following weeks I started physical therapy, researched treatments/medication, and Scott, Ashlynn, and I did an Intro to MS Zoom call by the National MS Society. The call wasn’t as helpful as we all were hoping for but it also was meant for very basic information most of which we had researched on our own. It was however helpful to hear how much progress has been made in research and medicines in the past decade. I was able to find a bit more confidence walking with physical therapy. My right knee had started giving out unexpectedly but physical therapy was giving me the confidence to know that my legs would support me even if it didn’t feel that way.

I had issues scheduling my follow-up appointment with my neurologist. The staff didn’t return phone calls or emails. After lots of frustration and Scott going in to the office I finally was able to go back to the neurologist on October 26th. After hearing treatment options, Scott and I decided on Ocrevus, a DMT (disease modifying therapy), which seemed to give the best possible outcome to slow the progression of the disease. It is given through an infusion 2 times per year. We left the office feeling better that we had a path towards me combatting MS.

November 2023: I stopped seeing the chiropractor as it seemed physical therapy was to be the best path on my new journey. I was waiting for information on when I could start the infusions getting more and more frustrated with the lack of communication from the neurology office and never getting responses back from my inquiries. It also apparently takes a couple weeks for insurance to approve or deny the medication. I go and tour the infusion center where my doctor was sending me. I was hoping the tour would help ease my worries and fears. Instead it just compounded them more. I was told that I was not allowed anyone to be there with me (my infusions will take upwards to 6 hours). I was feeling frustrated and overwhelmed and not sure what to do and feeling more depressed. I also knew that this was not going to be the center for me so we decided to try finding an infusion center on our own. When I say we, I mean Scott, as my mental capacity for things had me breaking down. From the list of places he compiled for me I was able to find Pure Infusion Center. We went and toured that center. It was like night and day compared to the first place. I would be able to have as many people as I choose there to support me. I’d have my own suite (room) with snacks and a TV and windows to the outside world. So, the decision was made… this is where I wanted my treatments. The problem was the insurance process had been started with the other agency and even though I had requested a different company my neurologist offices staff/insurance company didn’t follow-up with each other.

I also now have a new symptom… my eyes are blurry. A scary moment after a shower when it seemed like I was looking through foggy glasses had me in tears. Let’s be honest, the tears come and go a lot but I was overwhelmed with the worst case scenario again… I would be blind. Scott researched and found out that it is super common for people with MS to have this sensation especially when their core temperature is raised and it would and should restore when the core temperature normalized. Ok, I can handle that. I bring cold water with me so I drink cold water after my shower. That worked for a couple weeks. Then the blurriness was happening more and more often and not just with showers and then not returning for the rest of the day. I contact my neurologist who isn’t concerned because my vision restores after sleep. I should keep an eye on it and let her know if it persists for a day or more. Another trigger to the vision issues and really any MS symptoms: STRESS. Hmm, guess what the entire year has been… yeah, Stress.

We do another MS Zoom call (this one with my mom too). MS101 by the Rocky Mountain MS Center. It was more helpful as it was small group based. It’s also where I was told I really should find a new neurology office after they heard my story of the last couple of months. I agree, but also, I want to get my first infusion in before trying to find another doctor as then I’ll have 6 months to find a new doctor. Plus, the fatigue had me overwhelmed with the idea of trying to find a new doctor. After the Zoom call, I was sent an email of info, including a couple of names for new neurologists.

December 2023: Still no progress as to when I’d start infusions. I’m texting my contact with Pure Infusion and they are hitting lots of red tape with the insurance company. Time was running out to get this done by the end of the year as the first dose of Ocrevus gets split into 2 infusions exactly 2 weeks apart. The insurance process starts over again as of January 1st so it had to be before that otherwise wait until Mid-January. I also decide after telling close friends and family in person or through phone and text about my diagnosis that I just would tell the rest through my Christmas letter (as the process of telling people is exhausting).

I had yet to say anything online as it was still too personal and I liked my facade of everything is happy and normal in my world. Posting about the fun trips, concerts and parties and not about my fatigue, loss of feeling and daily struggles. Plus, December tends to be my time that I shine between Ashlynn’s birthday and the holidays. I love the decorations, movies, lights and smells of the holidays so it’s easy for me to immerse myself in the holiday spirit.

January 2024: I am finally starting to feel a bit more like the Corrine I knew. The fog is lifting a bit and my symptoms seem to be not as pronounced. After months and months of being in a flare of symptoms, it was nice to have some breathing space. I send my contact at Pure Infusion a text the first week of January asking if she has an update, insurance seems to have approved things and to hold tight I’ll get a call from their office to schedule. WOOHOO! I am scheduled for January 17th and January 31st. I had done some research about things that are helpful for infusions…I bought different neck pillows, a new blanket (that would only be for infusions) and new slippers and packed a bag of fun things to keep me occupied.

January 17th, 2024 INFUSION DAY: I’m feeling nervous and emotional as the realization hits again: I have MS, and this will be my life. I will have infusions twice a year for the rest of my life if the medication works, but what if it doesn’t? All the fears and worries again. I have some adverse reactions during the infusion… head itchy and on fire. So we stop the IV, flush the line, get me more Benadryl start the medication again. More reactions… face flushed, ears super red. More Benadryl and half a bag of fluid. We start the medication again after a half hour of fluid. The rest of the infusion goes well. I am assured that all the reactions are normal and now we know what to expect and the fluid and Benadryl are now written into my chart so my infusion in 2 weeks should go smoother.

I felt drained the next few days, even getting a slight congestive cold (to be expected as Ocrevus makes me immunocompromised) and I have some slight symptoms again… wobbly, dull feeling etc. My neurologist had wanted to see me after my first dose… so I reached out to her directly (she had given me her cell phone number which I’d used on occasion). She told me to contact the office and schedule an appointment for February. She also said she was retiring from practicing in March but that she would send me over some names of new doctors… guess what, I already had some, I just hadn’t acted on it yet. I contacted her office and left a message to schedule an appointment… then Scott contacted her office and left a message with no response, I emailed, no response. Then Scott dropped by the office after over a week of us trying to contact them. Apparently the whole office staff had a turnover… hmm, more reason for a new doctor… but appointment scheduled for February 6th. I had also already found a new doctor and have an intake appointment for April 25th. New office seems amazing and not only answers their phone but also has a portal with prompt replies.

January 31st, 2024 INFUSION DAY: I am nervous again as I’m scared about the infusion reactions from 2 weeks ago but we have everything in place and are prepared. Guess what, no reactions! Next infusion scheduled for July 31st. We were done much earlier this time as it went so smoothly I even had energy for us to go get ice cream and then even more energy that we walked around the lake at the park, twice… 3 miles!

February 6th, 2024: Follow-up appointment with current neurologist. She is optimistic on how I’m doing as I am walking better and is hopeful that we have found the best medication and course of treatment for my journey with MS. We talk about the new neurologist, she thinks I’ll like her… so that’s cool. We also talk about my sleep habits which is definitely not something I am able to do well. She suggests taking the pain pills again that she prescribed last year. I had been hesitant to take them as I wasn’t in pain I just wasn’t sleeping. She said to try them for the rest of the week and then text her the beginning of the following week and let her know how it works. She told me she’d really like to figure out how to get me restful sleep before she leaves the practice. Guess what, it worked! You can read more about my sleep struggles in this blog post from a couple weeks back… titled SLEEP. I think in reality, I might have liked my current neurologist if it hadn’t been for her office. Oh well.

Currently: I am in a pseudo flare. My hands fall asleep regularly and then the tingling continues for hours, my feet have the slight/dull feeling again (but not as bad as last year), my drop foot is more pronounced, my bladder weak, my digestive track kind-of blocked and my fatigue level is severe. This all should be short lived. Also, I need to remember to rest. Even though my mind is telling me to quit slacking and do things… really, I need rest and not just hours of rest but days of it and that’s okay. It is also okay to plan things knowing that my energy levels might have me cancel. Or, it is okay that I need to reserve energy by resting a few days before doing something that might take up a good amount of energy. It is hard to think this way and to remind myself that going shopping or hanging out with friends is draining. That going to concerts will put me in low-power mode for a few days. I need to keep reminding myself that life is different now, not different bad, just different.

So here we are… My Journey, My Story Thus Far with MS

Combating the Disease:

So, now how I am going to fight and Combat this disease? Well, now you know that I’m on Ocrevus which hopefully will give me the best chances to slow or stop the progression. I’m going to continue with my physical therapist through at least October and probably intermittently the rest of my life. I’ve also started to change my mindset as you’ve noticed when I picked up writing again last month. I will use my blog as part journal, part sounding board and still very much my ramblings about life as I learn and educate not just myself but others about MS. I’m working on not letting my disease control me or define me. This is hard as there will be times that my symptoms will cause me to say no to things or cancel things. But, part of my learning is also learning what my triggers are… so far… heat, stress, and fatigue.

Another way I am going to combat MS is by doing the MSWalk2024 Denver in May. You can donate to help the National MS Society find a cure through education and awareness.

Click my link here to donate: TEAM RINI

I went to a workshop with my friend Jessica this past weekend… The Earth Laughs in Flowers- Using Art to Heal Grief. What I am learning is that I am am grieving my old life before MS. So I made this to remind myself of a few things. My favorite color is Green. And in this case it is not just representing life but also that of rebirth mixed with the color for MS: Orange. I chose trees to signify the tree of life and my love of Celtic heritage but also of the cycle of life… what looks dead can thrive if given time. The word “Be” in the top meaning: “Be Present”, “Be Okay to not Be Okay”, “Be an Advocate”, “Be Fierce”, “Be Authentically Myself”. The wings in the center are to remind me of the people I’ve lost to the battle with MS (Auntie Beth, Uncle Wayne and Great Uncle Jim). Also to remind me that I am never alone, there will always be people holding me up when I need it, carrying me when I falter. Because No One Walks MS Alone. The letters M S and the puzzle piece are in the corners to remind me that MS is just that… a piece in my life but not the whole picture. Besides, the puzzle piece is orange, and I like to imagine the many others that live with this disease coming together and forming a beautiful picture. Then I have at the bottom the words Live and Love (depending on how you look at it). Live Life fully, with Love. Love Yourself (Speaking to Myself) in all the many things that make you, you.

As always, my friends… Sending you Love and Light for your Cups today. 🧡☕️🧡

Rini Drinks… mostly coffee…

lots and lots of coffee

Month: March 2024

Breathe in

Snow Watching

The Calm Before A Storm

Combatting MS… Otherwise Known as Corrine’s MS Story