A Not Too Shabby Weekend!

I bid farewell to my brother this weekend as he left our house to board his flight back home to Virginia. I haven't seen him in 6 years; he is married to a wonderful woman, and they have 3 great kids. I was pleasantly surprised when I got his email, a few weeks ago, about coming to see me for a weekend. Next time I'm hoping that he brings my sister-in-law with him!

He got to meet our son, Eli, and both kids were completely taken with him. They played and chatted, and even snuggled on the couch with him. It was awesome to see, and it melted my heart. Getting to sit around and talk about our memories, share jokes, laugh over stupid movies, and worship together at church was such food for my soul.

It rained for most of the day on Saturday, so we just sat around, chatted, and watched some TV. Then, later in the afternoon, the sun came out and we got to enjoy some time outside with the kids. We are ALL a little tired of the rain and humidity here in North Texas. For many people with MS, our symptoms worsen during bad weather, and I am no exception. The weeks of rain and humidity have made my nerve pain, fatigue, headaches and restlessness much worse than normal. 

But over the weekend, the weather broke, and my symptoms seemed to lessen somewhat. I still had some pretty crazy nerve pain and pins and needles on Saturday, then I didn't notice it much at all on Sunday. I didn't have any leg weakness or pain during church. We took my brother to downtown Dallas, where we went to lunch and toured the Sixth Floor Museum in Dealey Plaza. Not once did I feel weak or in pain, and that was such a blessing. I got to enjoy the entire day with my brother, without being sidelined by MS. I did have a headache for much of the day, but I'm pretty sure that's coming from the Gilenya adjustment. It finally passed in the early evening. 

It was so nice to finally get somewhat of a break from the symptoms that have been messing with me for so long. Oh, don't get me wrong - the cognitive shit never goes away. I still have memory issues and I still have a hard time coming up with words pretty regularly. I still drop things. But I had something of a break in regards to pain for the few days that my brother was here, and I was so thankful for that. 

As my friend Alex King says, the bad days with MS lead you to really appreciate the not-so-bad days, and this is so true. 

Oh, and I also signed up and created a team for the MS Muck Fest in Dallas on September 29th. It's a 5K mud run that benefits MS research. I posted about this event on the local page for Camp Gladiator, the group/company/family that I workout with, and SO MANY people have said they're interested! Trainers are pulling people in, encouraging them to sign up, and I am so encouraged by this incredible outpouring of support! As a somewhat invisible illness, MS can be a very isolating disease...it can be easy to feel overwhelmed and lonely in our fight to live a somewhat normal life. Having the support that I have through this CG family has helped me so much, and seeing the positive response to this race was just one more way that they were coming alongside to fight this MS madness with me. 

So, overall, an amazing weekend with family, and a break (of sorts) in the MS pain. I'm still waiting to hear back from my doc about these headaches that just won't go away, but I'm enjoying the hours that are free from all the other nerve pain. 

To all of my friends and family who are praying for me (and our family) through this journey - Thank you! I believe in the power of prayer, even when it doesn't bring the healing we desire. I asked a few friends for prayer on Sunday night, when my headache wouldn't pass, and within about 20 minutes of asking, the headache was gone. So, we appreciate all of your prayers, and all of your support. 

On a Bad Day...

For the most amazing man I know...

We've known each other for 12 years, and we've been married for 9 of those years. You've seen me at my worst and my best, and you know all of my secrets. We've built a pretty crazy life together, with two amazing kids and one ridiculous dog. Sure, we have our fair share of squabbles, but we can still laugh together over stupid reruns of our favorite shows. No matter what obstacle or challenge comes our way, we've always been able to figure it out together...and this life-changing diagnosis of MS is no different.

On a good day, I can take the kids to the park and enjoy the sunshine, feeling hopeful and at peace with this path. I won't feel like I'm going to fall over just walking through the grocery store; I might even get into a mall-walking groove, cruising through Wal-Mart.

On a bad day, when the pain in my face is unbearable and I can't put a sentence together without getting frustrated - you're there. You hold me when I say that I don't want to do this anymore and I don't understand and I'm pissed that God let this happen.

On a good day, I'll enjoy watching you and the kids eat the warm cookies I just baked, grateful that I can give you something you all enjoy...and precious memories to go along with it.

On a bad day, when I feel like the doctors and the medicine and the clinics and the side effects are all too much, and I just want to say "Hell with it all," you'll be there. You don't even have to say anything, but you usually say "I know, babe. I'm sorry," and that's enough for me.

On a good day, I'll stand in church and sing my heart out with the rest of them, my legs holding me up just like they should.

On a bad day, you're there to help me up and offer me your arm when I'm in a spasm or my legs are just too weak to stand up. You say "Who cares what anyone else thinks?" when I say that I'm worried about how people will think of me, sitting down like that during the "standing" part of the church service.

On a good day, my words come more clearly and my memory doesn't play as many tricks on me, and I don't sound like a toddler who's just learning how to speak. I sound pretty...well...normal.

On a bad day, you listen patiently as I try to come up with the right word for a common kitchen utensil. You don't make fun of me when I call a good friend the wrong name; instead, you use these moments as opportunities to teach our kids compassion and patience...so that they can grow up to be just like their amazing daddy.

One day, I may have a really good day when the doctors tell me that they've finally found a drug that remyelinates the nerves, a CURE for this disease. Or, I may have a really bad day when I lose the ability to move my legs, or I fall for the first time, or I lose my eyesight. Maybe all of those will happen; I don't know.

But I know you'll be right there next to me, holding me up, making me laugh, and loving me always - on the good days, and the bad ones.

The MS Voodoo Doll

Before I transfered to my current neurologist, at UTSW, I saw a young neurologist who worked in the same office as my primary care doctor at the time. He wasn't an MS Specialist...just a run-of-the-mill neurologist. When I first walked into the exam room at his office, his nurse told me that "MS is not a disease of pain." I remember thinking that was an odd thing to say, since I knew, even at that early stage of the diagnostic process, that a malfunctioning nervous system could absolutely cause varying degrees of discomfort and/or pain. I didn't argue with her at the time, because I was still in shock at having to see a neurologist at all.

At the time of that appointment, I told the doc that I had been having some weird, electric-like shocks in my face. He didn't seem concerned. Over the next couple of weeks, those shocks turned into a sensation that felt like the skin on my face was being burned off, from the inside. It was made worse by hot showers, chewing, laughing and talking. Once, when I was outside, some cold rain hit my face and it felt like teeny tiny fireballs, instead of rain drops. The doc diagnosed it as Trigeminal Neuralgia, a form of chronic nerve pain that affects the trigeminal nerve, which carries sensation from your face to your brain. He put me on Gabapentin, an anticonvulsant medication that also works to relieve nerve pain. My gastritis flared up like crazy after a few weeks of this medication, and I had almost constant "brain-zaps," a term used to describe the sensation of electricity briefly passing through the brain. So, the doc prescribed Trileptal, another medication, similar to Gabapentin, that actually did help the pain for a while. Unfortunately, I developed an all-over body rash from the Trileptal, so I had to stop taking it. I've talked to my current neurologist's office, and we're going to see if I can manage the pain using OTC meds for now. They were going to prescribe Lyrica, but it is very similar to Gabapentin, and I really don't want those side effects right now. It's also more expensive than the other meds, because there isn't a generic version. They have a coupon for it, but I'm just not up for all the work it would take to find a pharmacy that takes the coupon, then go through the whole process of my body trying to adjust to the med, etc.

And, honestly, sometimes you just want a break. I feel like my body needs time to adjust to the Gilenya, and I just got back on my regular antidepressant/anti-anxiety med, Celexa. The doc had changed that one because it had the potential to cause issues with my first dose of Gilenya. I just don't want to add yet another medication change into the mix right now.

The nerve pain isn't just confined to my face, though. I have pain down the back of my legs, similar to the pain you'd feel from a bulging disc in your back, when it compresses a nerve. I have pain in my feet and hands that feels like someone is stabbing me with hypodermic needles. It isn't constant, but it is painful and annoying. Sometimes, the pain in my hands will get really bad, like it did yesterday and last night. It's not a joint pain, or even a muscle pain. The only thing I can relate it to is this: Imagine the pain you get in your head, when you have a really bad headache - now take that type of pain, and put it throughout your hands. It's pretty damn painful. It literally feels like someone has a voodoo doll of me, and they're just sticking these needles into all different parts of my body, over and over again.

And despite being on a DMD (Disease Modifying Drug) there is no cure for this type of pain. My nerves are just misfiring...and so my body hurts.

But I'm not alone, and my case is actually pretty mild compared to some of my MS friends who have daily, almost continual nerve pain. And because nerve pain is so hard to explain, we often feel like our friends and family don't fully grasp the extent to which we're hurting. Honestly, how could they? It's one thing to see someone with a broken arm and understand that they're going to be in pain for a while. But how do you comprehend burning pain in someone's face? Or the discomfort of pins-and-needles pain in your extremities? It's tough...invisible illnesses are TOUGH.

In summary, I'll leave you with a description of the Three Levels of Pain: 

1. Regular Pain

2. Excruciating Pain

3. Stepping on a Lego

Happy Saturday, ya'll!

Gilenya FDO Day...

Happy Saturday, ya'll! The day is finally here - my First Dose Observation for Gilenya, the DMD (disease modifying drug) that my doc and I have chosen for my first MS treatment option. As with any chronic illness, MS is constantly changing, and the way it responds to treatment changes, too. So, there's no "one size fits all," or even "one size fits one forever." Gilenya may work for now, or it may not. It may work for a while, even a few years, and then it may cease to be effective. There's no road map for this disease, so we just make the best decision we can with the information we can gather at the time. As all my other MS beasts know, the DMD is only part of the treatment anyway; the rest of it includes a healthy diet, exercise, rest, supplements, and social supports. Optimally, they all work together to prevent future relapses and the growth in the number or size of lesions. We all know that's not a guarantee, though. So, I'm learning, slowly, that it's a fine line between being realistic and pessimistic; staying positive, versus ignoring the facts and challenges of the disease. It's a balancing act, for sure...

Okay, so more about Gilenya. Here's basically all you need to know - It's a pill, and I take it once a day. Supposedly, it works by sequestering some of my white blood cells in my lymph nodes, so they don't get released into the bloodstream, where they can attack my nervous system. Hopefully, it gives my body a break from the attacks on my myelin (sheath that covers the nerves). I won't bore you with the possible side effects...because there really isn't an MS drug around that DOESN'T have side effects. The hope is that the benefit would outweigh the risks.

It took me a few hours to type this post. I kept getting distracted by the whims of my own crazy ADHD brain, and then I was interrupted by Dr. Edwards (the FDO doc) for BP and HR checks every 30 minutes. He JUST left, about 15 minutes ago, and I'm sitting in the living room with Lily and Eli. Eli's watching something on his Kindle, and Lily and I are watching "Anne With an E," the new show about Anne of Green Gables, on Netflix. I'm excited to see this with her, because I loved the story when I was little. (Oh, and Anne has red hair...just like our Itty Bitty.)

The FDO is over, and I passed with flying colors. They do an EKG at the start of the visit, and one at the end of the 6 hour time period. Throughout the visit, they take blood pressure and heart rate measurements (sitting and standing) every 30 minutes. There is a slight risk, with Gilenya, that the QT interval of the heart will be slowed and cause an "electrical short" in the heart's rhythm...which is why they take all of these precautions. My heart rate only dropped slightly at the very beginning, around hour 2, and then stayed in a healthy range for the rest of the visit. My QT interval only changed by a few digits, so I was given the thumbs up by Dr. Edwards! I'm going to attribute some of my success to having a healthy HR and BP from a consistent exercise regimen...I gotta take credit where I can, ya'll!

Looks like I'll be taking my next dose in the morning. Here's to hoping and praying that it does what it's supposed to, and that I experience as few side effects as possible..and hopefully NONE!

Have a great day, ya'll!!

Discovering Spasms, Nurturing Children, Meeting Crystal, and Getting Sick

 You'll never guess how many times I started and stopped this post...unless you have kids, in which case you'll correctly guess "a heck of a lot," because children are born with this uncanny ability to know the exact times at which to call for us. And it's ALWAYS when we're in the middle of something else. Always. (And by "something else," I'm including that elusive thing called "resting.")

So...Eli is bathed, dressed, and watching a show on his Kindle, in his room. We put the baby gate up at his doorway, and I'm in our room about 5 steps away. That way, he is still there with us, if he needs us (which he probably will in about 5 minutes, as per usual) but he's got his own space, too..which he loves. Lily is getting her nightly, 45-minute, molten-lava-temperature shower...which I didn't mind tonight, because she needs the steam to help break up some chest congestion. She has this hang up about the bathroom door being shut while she's in there. When I told her I

 was going to close it, she said "But will I still get AIR??" She was seriously afraid she'd suffocate in the bathroom if the door was shut. After a full two minutes of explaining how oxygen works, I think she finally believed me enough to at least try it, just this once. Or maybe she's just too sick to argue her point the way she usually does.

Speaking of chest congestion...both of these kiddos tested positive for Flu-A yesterday. Ugh..Eli had his worst day on Sunday, and Lily has had her worst day (so far) today. Lots of coughing, snot, fatigue, headaches, and low grade fevers. (Eli says "My brain hurts, Mommy," when he has a headache...the things they say at this age are so freakin' cute.)

Eli seems to feel better today, and he's been fever free since yesterday. But our poor Itty Bitty (her nickname since birth) is still feeling pretty rough. The pediatrician said Eli could go back to school tomorrow, but Lily will stay home until she has at least 24 hours fever-free, with no medication to control it. She is so broken-hearted, though, because this is "Swim Safety" week at her school. Starting in second grade, her school district takes each class of kids to the district natatorium, where they separate them by skill level and give them water safety lessons. It's part of the curriculum, so parents don't pay any extra for this. I absolutely LOVE that our district does this, because it gives children who can't afford swim lessons the chance to learn how to save themselves, or someone else, in case of an accident in or near water. And, seriously, it's Texas - there are pools, literally, EVERYWHERE.

Anyway, we're hoping our girl turns the corner tonight, so she can be fever free and go to the last Swim Safety lesson on Thursday. She has cried many tears over missing it...and I don't mean the normal, everyday, Lily dramatics. I mean serious, broken heart tears..and it has crushed me. I hate it when they're sick and I can't do anything to make it go away.

Okay..so, that catches you up on that. On to other things...I met a new Primary Care Doctor yesterday. Her name is Shamalamadingdong or something or other...I don't remember. (Lesions, ya'll..) Anyway, I like her. She's very laid back and chill, with long salt and pepper hair...reminds me of a hippy. I like hippies. She gave me a prescription for preventive Tamiflu (only $5, SCORE!) which was good BECAUSE...I now have the flu. (Maybe the "preventive" part was a little too late..??) Cough, sore throat, headache, and low grade fever (which I realized at the MS Specialist's office today). Yup. Good ole' Uncle Fluberduber is here to infect the Trice house. Hubs thinks he's getting sick, too. What fun!! Break out the Clorox!! Wash all the sheets! Disinfect the children!! (The dog looks scared...) I'm currently sitting on my bed, typing this blog, and drinking a cup of lukewarm coffee because that drink has always helped when I have a sore throat. It won't keep me up either...I have a super high tolerance to caffeine, which isn't exactly a GOOD thing.

Saturday night, had some serious weakness, those violent leg/arm/hand/body shakes, dizziness, etc - the whole twelve yards (I've decided that "nine yards" just isn't long enough for the myriad of things that ole' MS can cause...so I added a few yards...my apologies to the Department of People Who Come Up With Catchy Sayings.) All I did was workout in the morning, putz around a bit, rest, then take the dog to the dog-washing place. I had to wash her in one of those tubs they provide. But I napped afterwards, and I assumed it would be okay to go to a special service at church with some friends. Ugh..I was miserable. Well, not really MISERABLE...I loved the service itself. But I physically felt miserable. I seemed to regroup a little on Sunday, then Sunday night the kids got sick and, well, you know the rest...

Today, I met my MS Specialist's Nurse Practitioner, Crystal. I like her. She's very personable, very kind, and seems very knowledgeable. When I walked in, she stood up (I love my actual doc, but she didn't stand up when I entered the exam room, and that's just a pet peeve I have because I'm old school...goes along with people who wear hats inside, or wear hats at the table, or don't take hats off when praying..I'm old fashioned, I guess). Anyway, Crystal said "I'm just going to leave this appointment open for you to ask any questions, and for me to try to answer them for you." How cool is THAT?!?! Especially since that's really all you need when you first get this diagnosis.

I talked to her about how it seemed like I had more symptoms NOW than when I got the first MRI in November. She explained how, because MS is often influenced by anxiety, that they find this to be very common in newly diagnosed patients. Apparently, since I was just diagnosed, I will probably notice and experience "new" symptoms pretty regularly for the first several months. She said that, as I get going on my treatment plan, and I start to mentally get past the shock of the diagnosis, that some of these symptoms will settle down. Others will stick around. I asked her about the word "remission," because I could have sworn I would have hit that bad boy before now...she explained that (because of the whole shock-anxiety-symptom connection mentioned above) my body is still pretty wonky (she didn't use those exact words, of course). She explained that the things they look for, in regards to actual relapses or flares, are new or worsening symptoms that last 48 hours or more. I had always seen the "24 hour rule," but she said they often see symptoms that pop up and then resolve within a day. So they use the 48-hour rule, unless it's obviously too serious to wait...i.e., can't get out of bed, can't see, etc. I showed her the video of my violent leg tremors, and she said that these are actually spasms (very common in MS) and prescribed Baclofen (muscle relaxant) for me to take at night when the spasms are bad. I'm hoping they'll help with the internal tremors, too, but we'll see. Many times, my EXTERNAL tremors start as INTERNAL tremors, but I'm not sure how the Baclofen will work on internal versus external. I'm not allowed to take it before driving, and it's best to take at night, she told me. Makes sense, since it's a muscle relaxant. It's good to know I wasn't making up those tremors in my mind...they're an actual THING. I thought I was going crazy...I swear it looked like I had Parkinson's Disease when I was experiencing them on Saturday night. So freaky...

I also asked about getting a cane, for support when walking. I explained how I get so weak when walking sometimes, and my legs and feet start to fall asleep. She told me that I need to learn how to listen to my body, say "no" to things, take breaks (even if I have to "make people wait" to do so), sit down if I feel weak, and pace myself throughout my days to conserve my energy. She said she didn't think a cane would necessarily help at this point, since it's more of an issue with weakness than balance. So, I'll take it. I'd rather not have to deal with a cane any earlier than necessary.

Well, that about sums up the past few days for me...they've been full, although maybe not full of all good things. I am so grateful for a new primary care doc who is close to my house; one I like, and one who gave me meds to help this flu not be any worse than it is. I'm thankful for a great Nurse Practitioner who made time for me today, and helped me understand (as much as anyone could) the crazy disease that has decided it wants to hitch a ride in my nervous system, and I'm thankful that the office staff at the MS Clinic was nice today. I'm INCREDIBLY thankful for a husband who telecommutes and could watch the kids and care for them so I could go to work this morning and to my appointment this afternoon.

Finally, I'm thankful for gluten-free chicken and rice soup, which I'm about to go eat.

Have a good night, ya'll...

Pace Yourself (or "Just Give Yourself a Freakin' Break")

I went to camp this morning. For the past two years, I've worked out with a group called Camp Gladiator. It's a challenging, but fun, outdoor boot camp. They only hire certified personal trainers, and they give modifications to people who can't do certain exercises. The whole concept is that working out should be fun, and it should be a time of encouragement, support and motivation. Anyway, we always say we "went to camp," and we call ourselves "campers." One of my favorite things about "CG" is the community of it all. We have people who are in wheelchairs, people with prosthetic legs, pregnant women, competitive triathletes and men and women in their 70's. Literally anyone could walk up and do a workout with us, and we love cheering on everyone who is out there. After all, they've already conquered the biggest challenge - they simply got there. That's about 95% of the battle when it comes to fitness. The other 5% is actually working out...

Anyway, as I was saying - I went to camp this morning. It's funny how all kinds of things over the past several months have started making sense now. A few years ago, I had a period of time when I was really dizzy and fatigued. My doctor said he didn't think it was anything serious, so I just thought it was my body working through a virus, or just being overworked. Those dizzy spells came and went over the past few years. But things really "ramped up" this past June/July, when I started dropping things and having grip strength issues. Nerve pain in my legs, followed by occasional numbness and tingling in my left hand and my tongue (weird, right?) started bothering me a few months later. Then, pain in my hands...then I started noticing (at camp) that my arms weren't as strong as they used to be. My legs and feet would go numb when I was running or doing a lot of exercises on my feet. Then October came with it's barrage of neurological issues, which led to the MRI, which led to the diagnosis in January.

What's the point in me telling you all of this? Well, I've noticed that I have to really pace myself when working out, for a couple of reasons. If I am pushing myself too hard, my legs and feet will start to go numb. It's an instant sign that Mama needs to step back, and I do. If my hands start to hurt, or the nerve pain in my legs starts up again, I will take a break for a day and not workout. I will stop during the workout if I feel weakness or heaviness anywhere, and just sit on my workout mat and rest. I don't push my muscles as hard as I used to - not because I CAN'T, but because of the consequences. I know that, if I push myself too hard during my workout, then I will pay for it with the fatigue, tremors, and weakness later (and maybe pain, too). I read a great article (or it may have been my Multiple Sclerosis for Dummies book, I can't remember..lesions, ya'll) that said that we have to be vigilant about conserving our energy throughout the day. That made sense to me, and it makes even more sense when you see it play out in your life, as it did on my trip to Vegas recently. It may seem like we're being super productive by cleaning the entire house and the dog and the car on Saturday...but we often pay for it on Sunday, and maybe Monday, Tuesday and Wednesday.

Now, I'm not AT ALL saying we should sit on our couches and do nothing. There are certainly times when we have to do a ton of chores because they need to get done and there's no one else to do them. Or, we have to prepare for our child's birthday party...or spend hours hiking with our spouse because they love it and we really want to do something with them...or any number of things. And you know what we do? We pull up our boots and get to work...despite what we may feel like later. Because if we let this crazy disease control how we live our lives, then we will literally go crazy. I'm certainly not the expert in this field, by ANY means...I've literally only had a diagnosis for a month. But I've noticed this concept of energy drain at work in my friends with MS, and in the MS Support Groups that I'm a part of online.

I also follow a blog by my friend, Alex, and she talks about this often. When she's feeling good and has some energy, she does what she wants to do and enjoys it. When she's feeling crummy, she takes a break and lets her body rest. But what she DOESN'T do is always let her activity or her moods be determined by "this MS bitch," as she calls it. (PS: If you want to follow her blog, just go to the bottom of the page...it's in the list of blogs I follow!)

So...I am starting to feel less and less guilty about saying "no" to things - invitations, events, etc. I'm learning to be okay with my hubby helping me out with chores and the kids, and he's AMAZING at taking over and doing stuff. It's tough to not let it knock your pride when you have to accept help or have to give up the chores you took pride in doing. But I have to pace myself...both in my workouts, and in my everyday life. I have to, because I want to use my energy to be present for my husband, my kids, my family and my friends (another thing Alex drives home constantly...BE PRESENT for those you love the most...seriously, ya'll NEED to read her blog).

Today, I'm drinking out of my giant "Liquid Patience" coffee mug, as I watch my husband, who just finished cleaning the bathrooms, fold the laundry. I told him I could do it as I sit, but he's doing it anyway. Because he's freakin' awesome...

The message on this mug reminds me that I have to be patient not just with others, but with myself. I have to be patient as I get used to the changes in my body and my mind, and learn to just take life 24 hours at a time. Because all we're ever promised is the moment that we're in, no matter how much we'd like to know the future and be able to control it.

Let's just give ourselves a giant freakin' break, okay? Love ya'll!