Hi, my name is Lisa. And you are?…

Some common responses I get when I, inevitably and apologetically, tell people that I have a memory deficit include; “Oh Girl! I totally get it! I can’t remember a thing”, “I lose my keys, like, every day”, and “I totally feel you, I can’t remember anything since having this baby.” While I tend to appreciate the empathy, I also feel like people are really not getting me. It is common to have “Mom Brain”, issues remembering little things like lost keys and phones, and feeling forgetful in our busy and distracted lives. What is not common is having a memory deficit so severe that you have anxiety every time someone talks to you because you are worried you will not remember who they are, even if you’ve known them for years.

You see, somewhere along the lines of this ridiculous disease process, the parts of my brain that control verbal recall and short term memory shorted out  big time. When I was in middle and high school, I did theater. I would memorize entire scripts and perform with confidence. Sure I was always kind of a forgetful kid, but I was highly social and loved getting in front of crowds and making lots of friends. When I was in college, I memorized thousands of medical terminology words, was a part of the Alpha Beta Kappa Honors society, and a quick study. My life today looks a bit different.

Last week I ran into my sons football coach at the grocery store (A person I have known for the better part of 10 years). I said hello to him and remembered his name but then I asked him if he was still coaching football. THIS GUY IS MY SONS FOOTBALL COACH. He looked at me strangely and I was so embarrassed. I wish I could say this was an isolated incident but it happens very frequently. People will come say hi to me and I have no idea who they are or what their name is. Most of the time it is people that I have known for a while and I have now gotten to the point where I just try to avoid people because I don’t want anyone to think I’m being rude or that I don’t care enough about them to remember who they are.

Equally frustrating is my total inability to recall verbal commands. If you give me a set of four numbers to remember, and then ask me 15-20 seconds later what those numbers are, I do not know. You can imagine what it is like when I am given a verbal task, or what it is like to have a phone conversation and not remember what we were talking about. I have to write down EVERYTHING, usually in 2-3 places. I set reminders on my phone for EVERY task I have to do and still forget most of the time. Those that know me well know to call, text,  and bat-signal the day before/the day of/and the hour before any event or plan we may have. It’s really rather exhausting to have the memory of a common fish.

I try to have a sense of humor about it. My friends do too. I’ve even been given the nickname “Dory.” What else can you really do? On the positive side, movies that I’ve seen is like seeing a new movie so I never get bored of watching (until it enters into my long term memory, which is still “just a little below average” according to my neurologist). Also, when my kids tell me about accomplishments, I get to get excited a bunch of times because they usually have to tell me 3-4 times.

The memory deficit doesn’t make me a dumb person (also confirmed this with my neuro because I thought I may be losing brain cells for real). I do always try to jog my memory with various exercises in an effort to help my problem not diminish worse. Trust me, my lack of proper memory is not due to any lack of trying to have one on my part. But the next time you walk up to me and I look like a deer in the headlights, maybe just remind me who you are. (I will totally act like I definitely knew who you were all along but on the inside I’ll be thanking you for the reminder) Also, don’t let me borrow anything because you will probably never get it back because I WILL keep forgetting to bring it with me. And, please be patient with me if I forget that my kids’ practice was suppose to start 30 minutes earlier than usual, I made the same meal for you three times in a row because I forgot that I made the same thing for you last time, or that I was suppose to bring the bread to the potluck and show up with brownies instead.

 

4 years later…

It’s been 4.5 years since my initial onset of Transverse Myelitis. Four point five years…. I’m just going to let that sink in for you and me for a moment. As I sat and filled out my disability renewal paperwork, I felt extraordinarily frustrated. Why am I not “Better”? Why am I STILL checking all the boxes?! I asked my neurologist the same thing at my last appointment. I don’t understand. I’ve done all the “right things”. I eat well, go to physical therapy, to cognitive function exercises, stay positive (mostly) and hopeful. But here I am…. 4.5 years later… and all of my work has not willed my body to heal properly. There’s still a disconnect from my brain to my legs, from my brain to my brain! (It’s like the hamster forgot how to use the wheel!) What is it in my body that just refuses to heal?

Don’t get me wrong, I’ve adapted, so much so that sometimes I forget my limitations…until I forget my limitations. (Dear Stadium stairs, we are not friends) I have joy, love, and peace in my life and I’m abundantly grateful for that. It’s just that sometimes we miss the “old us” right? We cannot believe we have lived with some super weird and debilitating disease for X number of years and still haven’t gotten better. We cannot believe that we’re not back to working, kayaking, mountain climbing, or whatever it is we used to just get up and do!

And then there are the other people in our lives. We worry that we have disappointed them. We worry that they don’t understand our limitation or worse yet, we worry they think we should be better by now too! Oh the fear of judgment! But what can we do about those people? We can educate… but when it really comes down to it, opinions are like noses (or other body parts), everyone has one. If we spend our time trying to convince judgmental people that we are truly battling every day, then we steal away precious time and energy from those that love and accept us.

And so here we are, X amount of years later… still dealing with this illness. There are going to be days when we wonder “WTF?”, wonder why we are not better, ponder the mechanics of our bodies and think “Geez, this sucks”. That’s ok. But here’s the beauty of it all, We are still here. We are survivors, warriors, and triumphant. We have lived with our conditions and have adapted. We may not be capable to walking well or completing a full sentence without completely derailing from our train of thought, but by God we are here. We can still experience love, joy, peace, and beauty. My body super sucks, but it can still hug my kids, watch them play, and give words of hope and encouragement. I think I can live with that.

Long Time No See!

Wow! Has it really been 3 months since I last wrote a blog post?! Time has just flown! I’ve missed you guys! I want to know how you’re doing. How are you feeling? Que Pasa mi Amigos?!

I’m presently on a few kicks, one of those being essential oils. I’ve been spending LOTS of time researching how essential oils can benefit us Spoonies and using them myself. (I can’t tell you how great, or not great, they are if I don’t become a Guinea pig right? The next series of blogs I’m going to be writing about will center around balancing our mind, bodies, and spirits. This will include chats about essential oils, how what we eat affects our health, and things to avoid. (All of this coming from personal experience of course. I’m no expert, just passionate) What shall we call this series? “Chronically Healthy?”  “My body sucks but I’m going to love it anyways?” I’m open to suggestions.

As I get ready to roll out this new series, I would SUPER appreciate if your could spread the love! Sign up to follow my blog, like and share my FB page, give me a high five! My goal is to reach anyone that needs to be reached. If I can help just one person through sharing my personal journey, then I have done my job!

Namaste my friends. Peace, Love, and Blessings to you all.

1+5 = 48

1 incline in a parking garage…. As I left the hospital from visiting a friend (Yes, I was actually visiting and not admitted for once.), I walked, with my son in tow, back to the parking garage. I started toward the elevator to go to the second floor when my eyes gazed curiously at the incline in the parking garage. I stood there for at least two minutes and one question entered my mind, ” Could I make it?” It’s a seemingly silly question for most people, but for me, it was…The Ultimate Challenge. (Go back and Re-Read the words “The Ultimate Challenge” in your best movie-trailer-deep-voiced-dude impression) The logical half of my brain told me that “Now is not a good time because there are no adults around to rescue you if you can’t make it all the way up.” and then there was the warrior side of my brain that said, “It’s been a while since you tried to really push yourself so go on girl! Give it your best shot!”. My warrior brain won the argument but as my legs started to burn not even half-way up the incline, my logical brain scoffed as she won the battle.

+

5 Steps… You’d think after I had barely made it to my car, I would have gone home to hit the bath, ibuprofen, and bed, but I happened to be passing my nieces volleyball game on the way home and I’d really been wanting to see her play. When I wobbled into the gym, because by now my legs felt like jello, and not the stable kind, I saw that my sister was sitting 5 steps up the bleachers. I’m not talking about 5 “regular” steps. These steps were twice the size of regular steps, at least, and practically required a running start to get up. Again, The logical part of my brain said, “Are you even kidding me right now?” And then the warrior side of my brain roared, “YOU’VE GOT THIS! Don’t let everyone see your weakness!!” Well, guess which side of my brain won? My sister took my son and jaunted up the steps while I, very ungracefully, crab-crawled my way up.

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48 Hours in Bed… Somehow, by the grace of God alone, I managed to get home. Thankfully my Sweetie was home and was able to help me into bed. My little adventure took its toll and I ended up in bed for two days trying to recover. I needed help from everything  from dressing myself to getting in and out of the bath. So ridiculous that activities I used to never even think twice about can now wear my body down so badly. It’s frustrating as hell and, for the most part, I listen to my logical brain and play it pretty safe…But don’t think I’m not going to let that warrior brain take full charge every once in a while. After all, how will I ever know what I can do if I don’t push myself to find out what I can’t?

Thank You…

     The steroid therapy helped tremendously with the flare I was having. While I continue to battle the residual symptoms of this disease, I feel fairly human again and have had the energy to be Mommy and enjoy my sweet boy. My neuro team is helping me with the usual….daily headaches, fatigue, spasms…you know how it goes. I’m so grateful for incredible doctors.

Baby Jax is getting growing and just the sweetest. While he does continue to have some neuro-deficits, we feel confident he will outgrow them. Every time I bat an eye, he seems to get bigger. He might be my 5th but he may as well be my 1st. It’s amazing how God allows us the capacity in our hearts to make room to love every child just as fiercely.

I want to thank you all for joining me through my journey with pregnancy. My hope is that by sharing my experiences with pregnancy with an auto-immune/neurological disease will help other women to feel encouraged and armed with someone else’s trials to identify with. This was the most challenging pregnancy I’ve endured but I wouldn’t trade it for the world. I’ve learned so much about myself and the miracles of creating beautiful life from a broken body. I was so encouraged by your thoughts, comments, and prayers. I look forward to sharing our next chapter together.

 

https://www.amazon.com/dp/B01BNA52H6/ref=twister_B01BNA56B8?_encoding=UTF8&th=1
Jax loves his #TeethingPacifierClip ! It’s easy for him to grab, clips right onto his shirt or bib, and it’s perfect for him to sooth his gums on 💙

Week 2…

My body has gone totally off the wall. Every nerve ending in my body feels exposed, I’m running fevers, and I feel terrible. Thankfully I was able to get in to my neurologist quickly so she could try to get this wonky body straightened out. Since our bodies are neuro-protected when we are pregnant, it’s not uncommon for them to be totally out of whack after the baby comes but Good Lord, this has tested my limits physically and emotionally. I’ve started high dose steroids (ugh…I super hate taking steroids) but at this point my doctor could have told me I needed to roll around in pig crap for a week straight to feel better and I would have happily obliged. The headaches that I didn’t have for the last 9 months have come back to visit me daily. They are super unwelcomed but just like that relative that comes unannounced and overstays her welcome, my headaches have moved in, unpacked their bags, and brought their feral cat with them.

My ridiculous body aside, Baby Jax is doing well. He is still being monitored for his tremors with weekly doctors visits but he’s gaining weight, eating like a champ (I swear I breastfeed this kiddo 27 hours a day), and is otherwise very healthy. I worry, like every new mom, about every little thing. Is he pooping normal? Am I producing enough breastmilk? Is that sound he’s making OK? You would think he was my 1st and not my 5th, but with all of the medications I take, and the worry I have that they will affect him adversely, I’m a bit of a hot mess with him. His awesome pediatrician assures me that he is doing well, though, and that he is right on track. He is super strong and just the sweetest baby. Hopefully by next week, I’ll be feeling more human and his tremors will slow down a bit more.

One thing I know for sure is that we are so in love with this tiny human…and it has all been so worth it!

The first week…

 

It was merely hours after Baby Jax was born that we started to notice he was having some pretty significant tremors. The doctors and I knew this could happen and I was afraid of it happening. Jax was going through withdrawls from the Ativan that I have to take to keep my own tremors under control. The decision was made that he needed to be in the Neonatal Intensive Care Unit for more careful observation. I was crushed as they wheeled my baby away from my room. The weight of the guilt I had for causing my son to have to go through this was completely overwhelming. My baby was suffering because of my chronic illness.

I had stopped taking as many of my medications as possible and I titrated down to the lowest dose of Ativan I was able to take without causing myself harm from violent spasms and tremors early on in my pregnancy. The OBGYN told me that Jax could be born with some withdrawl from the medication but it was too much of a risk to my own health for me to stop taking the medication all together. This did nothing to make me feel at all justified when I saw my son going through his own spasms and tremors all because I had to take medication to help stop mine.

Thankfully he only stayed in the NICU for 4 days. It felt like he was there forever. I went every two hours to nurse him and cried every time. I just wanted to take my baby home. I continued to stay admitted to the hospital because it took 3 days for my epidural to wear off. The anesthesiologist explained that because some of the nerves in my spine were not protected by the myelin sheath, they were thus exposed and it would take longer for the medication to fully wear out of my system. On day three, I was discharged from the hospital when my sweetie and I went to stay at the Ronald McDonald house.

The Ronald McDonald House was amazing. I will never ever again go to a McDonalds and not place my extra change in their charity bucket. They made our stay as comfortable as possible. I was an emotional mess and not having to think about where I was going to sleep or meals, and being within walking distance from the hospital made the situation more tolerable. I think if I’d had been discharged home, I would have ended up sleeping in waiting room just to stay close to him. I’m very, very grateful to the volunteers, staff, and to McDonalds for making it possible for families to be close to their children during hospitalizations.

Finally, on day 4, it was time to take Jax home! We were so very excited! He got a clean bill of health, his tremors had stopped, and we were all going to be in the comfort of our home as a family.

Now I just needed to get my body straightened back out…

Labor Day!!!!

At 38 weeks and 3 days pregnant TODAY WAS THE DAY! We would get to meet our baby and we couldn’t be more excited! It’s 7am and you’d better believe I was going to stop for a Starbucks before heading to the hospital. I was excited and nervous and so ready. 8am was our check-in time. I was taken to Labor and Delivery and this time I wouldn’t be leaving without a sweet baby in my arms. I got into my labor dress and the nurses hooked me up to the monitors. After my IV was inserted, the nurses started the Pitocin drip to get my labor started…and then the waiting began.

And waiting…and waiting..and waiting….. 16 hours of waiting to be exact. Really I’d though with it being baby #5, he’d just kind of come on out as soon as I was given Pitocin but, Nope! This lil guy got himself quite cozy. I finally started having some stronger and more consistent contractions but still waiting for my cervix to dilate. It was time for my epidural. I was a little nervous about the epidural since such a big deal has been made about me having one with Transverse Myelitis but I felt very confident in the capable hands of the anesthesiologist. We started with a “walking epidural”. This is an epidural where a narcotic is placed into the spine to take the edge off but I was still able to feel my legs and even walk around. It was really very helpful. I liked that I could still feel my legs and move around. Apparently “walking epidurals” aren’t terribly common anymore because the whole nursing staff was freaked out by the fact I could have an epidural and still be walking. They wouldn’t let me walk the halls so I paced in circles around the labor room.

After several hours with no dilation, I was finally dosed with the highest amount of Pitocin I could be given in hopes of getting things moving along. My contractions became stronger but I still wasn’t dilating. We did, however, go ahead and inject the numbing medication into the epidural. My legs became heavy, an all-too familiar feeling. This time I knew it was because they were suppose to be getting heavy and not because my body was going into relapse mode so I felt more comfortable about it than I thought I might.

Two hours later and half-past midnight, I was beginning to wonder if I’d ever have this baby. I even sent my best friend home because she was also pregnant and had been sitting with me for 16 very long and uneventful hours. Contractions were strong but I was still only about 3cm dilated when the nurse came in and decided that she would try moving my leg into a “firefighter position”, which was essentially turning me onto my side and hoisting my left leg into the right legged stirrup. Almost immediately after she did this I said, “I have to push!!! The baby is coming!”.

It all happened so fast. I went from 3cm dilated to 10cm dilated in about five minutes. The nurses and doctors rushed in the delivery cart and we had the green light to bring Baby Jax into this world.

Everything went beautifully. I pushed and breathed and pushed some more. I could feel the weight of him leaving my body and I was being lovingly encouraged from my wonderful sweetheart and all of the nursing staff and doctors. He was coming. My miracle baby was almost here.

With one final push, my sweet baby made his way into this world. The doctors took him immediately to the warming crib and helped get him stimulated and breathing well. Moments later, they placed him in my arms and I think the photo above speaks volumes to my emotions. I was happy, relieved, excited, overwhelmed, and so in love. I just wanted to hold on to him forever and never let him go. In the coming weeks we would both be met with some difficulties but for right now, in this very moment, we had all that we needed. We were tremendously Blessed to have made it so far in this journey.

Chronically Pregnant – Week 37

I’m sitting in my car in heavy traffic 45 minutes away from my home, which is an additional 30 minutes away from where my honey is working when I start having contractions. I’m not talking Braxton Hicks, I’m talking “can’t talk through them, omg I’m going to birth my baby on the side of the highway” contractions. As I made my way through traffic while attempting to time them, I called my sweetie in a bit of a panic. (Ok totally panicked) I managed to make it home at about the same time he did and he quickly threw our hospital bags into the car. I was nervous, scared, and excited. This is it! The baby is coming and I am soooo over being pregnant!

We get to the OB ER in record time and I’m taken into labor and delivery, still contracting every 5 minutes. I thought, surely, I was at least 5cm dilated by now, but when the doctor did my cervical check , I was at a whopping 1cm. An hour later with consistent contractions it was time for a recheck. Still only 1cm… no progress. When the doctor came in and said, “You are having contractions but you are not in active labor,” I completely broke down crying. (Like nervous breakdown, nurses all probably thought I was crazy, bawling) “I just want the baby OUT!!!!”  I’d hit my breaking point. These last few weeks have been more challenging than I could have ever imagined and even the mere though of waiting 7 more days to birth this kiddo was just too much to bare at the moment.

Apparently, I had not been eating enough and drinking enough water, which was the culprit of the, once again, false labor. I did finally compose myself and leave the hospital without being committed to a psych ward. This was a good lesson for me though.

What Lisa learned about false labor (take 2):

1. Hey! You’re pregnant!!! AND you have a chronic illness!!! EAT! I was in traffic and I was super hungry and didn’t pack snacks. (How many dang times have I preached about packing snacks throughout this pregnancy?!) NEVER leave home without them!
2. Hey! You’re pregnant! AND you have a chronic illness!!! DRINK! …. And I digress. I think I’ve written about the importance of water in EVERY pregnancy post. I had run out of water and I should have had back up water bottles. Keep extra water bottles in your car at all times!
3. We made it this far. That’s a Blessing. I wasn’t feeling it in the moment but, truly, as exhausted as I am at this point, what a miracle that we really have made it this far! We knew it wouldn’t be an easy journey, right?!

Chronically Pregnant – Week 36

Ok, the belly has officially outgrown all of my maternity clothes. Mid drift shirts aren’t totally appropriate summer attire  when you’re pregnant right?! Two weeks until baby day and there is no way I’m buying more maternity clothes. I’m thinking maybe I could bring the toga back in style.

Big belly and pouty face aside, I’ve actually had quite a bit of energy this week. It’s been really refreshing to be able to just feel a bit more functional. The hardest part of having energy is definitely trying not to overdo it. When you’re chronically sick, the first thing you want to do when you’re feeling better is take over the world… or at least mop the floors and get through the mile high pile of laundry you haven’t been able to do. I’m having to remind myself to set a slower pace and reel it in a bit. All that overextending myself ever got me was more time served in the confines of my bed.

Our bodies can be so beyond frustrating. All we want to do is live a “normal” life and be active! When you have a chronic illness, that can be just too much to ask for. Being able to adapt is the only way to maintain our body, mind, and spirit.

A few things I do (or try to do) to keep myself in check when the energy is flowing:

1. I set a timer. I’ll allow myself 20 minutes to be active, getting that laundry done, cleaning around the pool, etc. Then it’s 30 minutes of rest. This little work mambo has been very beneficial.

2. My sweetie is my accountability partner. If he knows that I’m going to be running around with kids, staying busy with work, etc., he keeps me in check. He will call/text frequently to make sure I’m not wearing myself down and I’m very thankful for that! Sometimes time just slips by and I don’t even realize I’m way overextending myself.