Not Easy Or Simple

What am I thinking?

Days like today, I genuinely wonder what the fuck I’m thinking, starting a family.

I’m on day 5 of 6 of a medrol dose pack, my third within the last 5 weeks. My back is tingling. My whole body is sore. I’ve had more seizures today than I can count. I’m sweating all over, thanks to the steroids, and I have a monster headache. I also have no medical cannabis to help curb the pain or to blame for my slow thinking.

I woke up at 9 am and had to take a nap by 10:30. I couldn’t pull myself back out of bed until 12:30 p.m., when I finally made a smoothie. Two hours later, I actually had to call my husband to help me figure out that I could just eat a few pieces of lunchmeat for lunch, since I’m not up to chopping up veggies for a salad and making salad dressing… and I also couldn’t make decisions on a delivery website. I’m currently drinking a Rockstar Recovery and can’t silence the whimpering in my inner monologue.

When I feel like this, I wonder, “If I can’t take care of myself, how the hell am I going to take care of a kid?”

The answer, of course, is that we do what we need to do whether we feel like it or not.

It doesn’t help my state of mind that my blood pressure is stupid high today. On Friday, I stopped taking my daily 25 mg of hydrochlorothiazide because I thought that it wasn’t safe for pregnancy based on the linked page. I’m honestly not sure what to think, since the FDA has it listed as Category B, meaning there’s no risk to a baby. There are, however, studies that have shown that it’s possible that it can affect the baby.

I feel like I’m having to take a balanced risk. It isn’t something I want to take unless it’s necessary. On Thursday of last week, I had improved my BP to the point that it was 144/85. Today, it’s back up to 160/105. From where I’m sitting, it seems that without the HCTZ, my blood pressure is just too high to conceive and carry a kid.

(Update: I’m almost done with this entry and after some Aleve and that Rockstar Recovery, I feel significantly better. This makes me hopeful that I can manage things.)

Dealing With The Tough Questions

Yesterday, at the in-laws house, my sister-in-law asked me if we’d considered the option of adopting a toddler instead of having our own children, simply because it’s easier to care for a kid who is 2+ years old than it is to deal with babies. She’s seen how much I’ve been struggling over the last several weeks, and I know that her question came from a place of love and concern. It still gave me a lot to chew on.

I had to admit to myself that I’m worrying people I care about, just by trying to do something that normal people do every day. And that sucks.

I’m going to tell you exactly what I told her: My mom’s gonna come in town for a month when we have our baby, so I won’t be alone while Adam’s at work for at least the first month, which should give me time to figure out how to do things, and I am not willing to allow MS to take away this basic life function.

I feel like Adam deserves his own kids. I feel like my father deserves grandbabies that are part of his biological family (though I know, as someone who was adopted, he would love the hell out of any child we welcome into our family). I feel like, with all the work I’ve done to get healthy enough to become pregnant, I deserve to have my own kids.

I also was reminded by Adam that I have remitting-relapsing MS — not primary progressive. I do actually have times where I feel like a mostly-normal human being. In fact, there are times that I go weeks without a seizure. The truth is that I feel okay more often than I feel terrible. It’s just been an incredibly difficult 5-6 weeks dealing with this relapse. My perspective on my health and capabilities is completely shot from it.

Failing To Plan Is Planning To Fail

I’m not gonna lie. I know that I have no concept of how much work I’m signing up for… I know that it’s not going to be easy, even with a part-time nanny to help out when I’m not doing well and Adam’s at work. Heck, I was helping at the daycare center when I was 6, and I was Red Cross certified for babysitting at age 11. I worked for years as a babysitter, and I know that it’s nothing close to what it’s like to be a parent. It just means I know how to change diapers.

I’ve been looking at how much part-time nannies cost, and it’s become clear that it can’t be a regular thing. It looks like we’ll be able to get someone to help for around $10/hour. Full-time help’s just not an option. I mean, that’s $20K/year. I’ll bet that it’s possible to only hire someone for times when I’m feeling really bad and Adam’s not able to take a day off work. We’ve just got to find a good candidate.

Regardless of the price of help, it doesn’t change the fact that I deeply believe I am supposed to be a mom and that I’ll be a good one. It doesn’t change the feeling in my gut that it’s time to start a family. It just means that we have to be very budget conscious and aware of both our kids’ needs and mine.

We’re trying our best to plan things in a way that makes good sense. We’re not rushing anything.

I keep thinking about this quote:

“Nothing in the world is worth having or worth doing unless it means effort, pain, difficulty… I have never in my life envied a human being who led an easy life. I have envied a great many people who led difficult lives and led them well.”
― Theodore Roosevelt

Raising kids is really the only thing that I feel is worth all of my energy and effort. I want to be a good mom, and I will be.

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This is the Relapse that doesn’t end… Yes, it goes on and on my friend…

MRI Results

Last Friday, I had to get MRIs of my brain and c-spine both with and without contrast. On Tuesday, I met with Dr. J to go over the results.

The MRIs proved that I *am* going through an acute MS relapse. (Like the numb hands weren’t a clue.)

On the bright side, they also showed that I haven’t had any disease progression in my brain since 2012! No new brain lesions for 2 years? I’ll take that.

On the not-so-bright side, they also showed that I have disease progression in my c-spine, specifically between C5 and C6, which accounts for why my hands today feel like I dipped them in a vat of Ben Gay.

Rae vs. the Relapse: take 3!

So, the fun job of fighting this relapse started a little over a month ago when I started having tons and tons of seizures. Fast forward to today – and I’ve already taken 2 medrol dose packs to try to get better.

When I saw Dr. J on Tuesday, I felt fine. Normal, even! I had even been doing well enough to get back to the gym on Monday for the first time in a month. Dr. J did a sensitivity test with a safety pin and I couldn’t feel it until you got to the very top of my arms – like 3 inches from the shoulder. He didn’t like that (and neither did I), so he asked Adam to do the test at home and email him later in the week.

Adam never got the chance to do the test because last night was seizurepalooza, and this morning, I woke up with the Ben Gay gloves. I emailed Dr. J, and he responded quickly by ordering a THIRD medrol dose pack.

Now, I’m trying really hard today not to second guess Dr. J. He’s been a neurologist longer than I’ve had MS… but it feels like 2 dose packs didn’t get the job done, so why would he think a 3rd would? It doesn’t make a ton of sense to me… but I don’t have an M.D. So, I’m going to take it and hope for the best. If it doesn’t take care of business, I’ll be searching for a new MS specialist. I’ve been dealing with this mess for too long.

There’s Always A Bright Side

Yeah, today, I’m physically feeling bad… but my friends on Facebook totally met the challenge when I asked for “cheer up” material. Having an amazing support network makes all the difference in the world. Nothing helps you feel better than laughing. Here’s the very best of what was shared.

and

And last but not least… the thing that has tickled me the most

Friend 1: Where do sheep go on vacation? (awaits your response) 🙂
Me: No idea. Where?
Friend 1: The Baaaaahamas.
Me: OMG. Not Baaaaaahrcelona?
Friend 1: Or there!
Me: This has tickled me way too much. I keep trying to think of where else they could vacation.
Friend 1: That’s all that matters, right?
Me: It’s definitely a better way to occupy my mind than focusing on anything else. I’m also thinking they’d enjoy Baaaahston
Friend 1: OMG. And go to the baaaaar!
Friend 2: Baaaaaaahrbados

Where would your sheep go on vacay? 😉

I Would Like A Break, Please.

My MS is better. My hypertension is worse.

Health has been a struggle for me over the last month. MS relapse. Tons of seizures. And now, because I haven’t been able to exercise, and we’ve been eating convenience foods because it’s just too much work to do all the dishes and cook on top of dealing with regular household chores and being ill. Thus, my hypertension is out of control.

Adam – 1, Seizures – 0.
My husband, being the observant person he is, helped me realize that the amlodipine I’ve been taking to help control my blood pressure has been causing me seizures. It’s a side effect that happens to fewer than 1% of people who take it. So, I stopped taking it yesterday. It didn’t really seem to be helping me anyway, considering that my blood pressure WITH the drug in my system was 167/102 first thing in the morning.

Today, with no amlodipine in my system, it was 158/111, and I haven’t had any seizures. I would rather have no seizures and high blood pressure than to have seizures and high blood pressure. Quitting that med actually improved my health. 😛

I have an appointment with my cardiologist tomorrow afternoon. I have MRIs on Friday afternoon.

I don’t want to sound like I’m unappreciative of modern medicine, but it’d be super-great if my medications didn’t cause more problems than they helped.

It’d be even better if I could just be healthy. Seriously. Any time now.

Self-Compassion Level: Critical

One of the things that I’ve had to work intensely on since being diagnosed with MS is self-compassion.

I am a ruthless tyrant to myself far more often than I’m friendly, and I’m not proud of that. I mean, really, who would make herself take the CA bar exam twice while having MS and dealing with 30+ seizures a day, and then convince herself that failing that exam is evidence that she doesn’t deserve to live? Someone who has absolutely no compassion for herself. None.

It’s the same unhealthy mindset that lets a person believe that they deserve whatever abuse they’re dished out, by anyone. It’s not healthy. It smacks of low self-esteem.

When I can’t do chores or exercise, instead of feeling sorry for myself, instead of getting angry at MS or seizure disorder, I tend to get angry with myself. It’s as though I genuinely believe that I can do anything I put my mind to, and that all I need is a positive attitude… but positive attitude doesn’t cure paresthesia, muscle cramping, weakness in your limbs, or fatigue.

When I’m frustrated and angry, I forget that I didn’t choose MS. I’ve had to acknowledge that if I hold myself responsible for all the bullshit caused by a disease that I didn’t choose and that science doesn’t know the cause of, I’m actually engaging in victim-blaming. I’m being abusive to myself.

It’s too easy for me to blame myself for things I can’t control because it makes me feel like I have some control, when I don’t. And that combo of Automatic Negative Thoughts is called “Emotional Reasoning” with a side of “Personalization” *sigh* At least I recognize it.

Keeping It Real

The truth of the matter is that I’m having a hard time grieving for the life I had hoped for and worked towards. I’m stuck in the bargaining phase. I keep thinking stupid, irrational things — like, if I eat healthy enough and I exercise enough, maybe MS will stop bothering me forever, and I can try to have a normal life again. One where I can drive a car and have a job… or even go out for more than an hour or two by myself, safely.

I see stories like Dr. Wahls or Tanya Penny or Kristen – stories of women who have, one way or another, managed to improve their physical condition despite MS, who think that if you do the same things they do, your MS symptoms will vanish. Their stories used to inspire me to make positive changes in my life, but honestly, at this point, they just make me angry as hell. And jealous to boot.

Why does it make me so angry? Because they all try to tell you that through behavioral modification (eating paleo, doing yoga, “releasing stress”), you can stop your suffering. They suggest that you can control this disease through willpower. Their points of view make you responsible for the way that MS has been ruining your life. It means that *you* are the problem and not MS.

Do I think it’s a good idea to do yoga? Absolutely. Exercise is important!

Do I think it’s a good idea to eat paleo? Yes! Eating less processed food, sugars, and salts is good for almost anyone. (Folks with low blood pressure need salt, though.)

Do I think you should strive to be stress-free? Of course. Stress is awful. Everyone should try to have less stress. In a perfect world, having nothing to do would mean you were stress-free, but not having things to do causes stress too!

But has doing any or all of those things made my MS better at all? No. Not even kind of. Not ever.

It’s like being flipped the middle finger by reality.

The Shame/Guilt Pit

So what do you do when you have first been forced to admit that you’re not in control of MS (so that you show proper self-compassion and are not abusing yourself), and then are continually bombarded by the message “You can control your MS” by people who are just plain fucking lucky?

You constantly question yourself. You try everything you can, whether science backs it or not. And when nothing makes any difference, you get to feel the disappointment of failing yourself on a fundamental level.

If you haven’t tried absolutely everything, you get to feel like you’re causing the intense, chronic pain and muscle spasms. You get to feel guilty about being cared for and guilty for whatever emotional pain you’ve caused your friends and family by simply enduring this — because no one would have to endure this with you, if you would just get on with the business of curing yourself.

So am I a victim of MS? Or do I buy into the often proudly-touted ideal that we are not victims — that somehow, magically, I can kick MS’s ass, and that I am just not doing enough to make it stop?

Do I buy into the idea that I am a knowing accomplice to my autoimmune function, or do I admit that I am being forced to deal with its fallout? Is it really a good idea to choose to take responsibility for something I cannot control by convincing myself that contrary to medical scientific evidence, I can control it? Nope. That’s delusional.

The troll in my inner monologue is constantly asking me, “WHY DON’T YOU MAKE YOURSELF BETTER ALREADY, RAE?! CLEARLY THIS IS YOUR FAULT.”

Y U NO CURE MS?!?

Y U NO CURE?!?!?

But it’s not my fault. I am not the bad guy. If I were, we’d have some idea as to why people get MS. We’d know how to avoid it.

Maybe I am an asshole for thinking that until anyone can provide repeatable medical evidence that their methods stop MS in its tracks, they should shut the fuck up and stop pretending that they have a cure. Shaming millions of people who are suffering with a frightening disease for not acting like you do is not ok. At least Dr. Wahls is doing the research studies…

If there were a real, proven way to make MS stop, I’d do whatever it took. I am beyond ready to stop feeling bad.

My Future’s In My Hands

Can you feel me?

This has been one heck of a week. It started on Monday morning when I woke up with absolutely *no* feeling in my hands. That was scary as hell. I could still move them… I just couldn’t feel them. Surprisingly, I could mostly type. Maybe it’s because I have it so hardwired into my muscle memory. I type most of the day 5 days a week.

I repeatedly asked Adam to take me to the emergency room, but he thought we should call the neurologist again (I had called prior to 9 am and again at 10:30 am) and wait to see what he wanted me to do. The answer came around 4 in the afternoon –come in on Tuesday to see him. So, that’s what we did.

Fortunately, when I woke up on Tuesday, I could feel my hands again. They were burning and stinging terribly, but at least they felt like they were *there.* Dr. J took out a safety pin and told me to close my eyes and let him know when I felt something. I didn’t really feel the pin until he was at the upper part of my arm. I felt a little pressure, but certainly no sharpness. I thought he was playing a trick on me or something. I really didn’t feel the pin at all on my hands. Adam, however, has assured me that I got poked repeatedly. This did not sit well with me.

Dr. J asked what I wanted to do. I told him that I’ve always had solu-medrol when I had an acute MS exacerbation, and was immediately told that there’s a national shortage of solu-medrol right now and that he couldn’t give me any without MRI proof that I have new, active lesions. (Maybe I’m being simple, but isn’t suddenly and completely losing feeling in your hands prima facie evidence that you do have new, active lesions in your spine?)

So, instead of putting me on an IV of corticosteroids, he prescribed a second medrol dose pack (I took 1 two weeks ago and it only got rid of the numbness on my left side.) and scheduled MRIs of my brain and spine for 3/21. I then see him on 3/25 to discuss what the MRI showed.

For anyone playing the, “How long has this shit been going on?” game, that means that it will have been 15 days between losing all feeling in my hands and a discussion about what my MRIs show. To me, that seems like a really long time for something as important as use of your hands. Moreover, I will have finished the medrol dose pack on 3/16, which, if it works, would make the new lesions inactive, right? I wish I understood his methods, but I have to trust that an MS Specialist knows more about this disease than I do.

He also was not pleased that this happened only 4 weeks after quitting Gilenya so that we can try to start a family. He said that depending on what we see on the MRI, we’d have to have “a very serious discussion.”

I said, “We haven’t even had the chance to start trying.” I’m not going to choose to not have a family because I had one ill-timed exacerbation. That’s just crazy. I’m guessing he might try to get me to go back on Copaxone, since you can be on it even during pregnancy. I only stopped using Copaxone because he said it wasn’t doing anything for me, but I felt so much better when I was on it, regardless of how much I loathed giving myself a nightly injection.

I have no idea what the right thing is to do, to be quite honest. The only thing I do know is that if he suggests that I should not get pregnant, after all the work I’ve done to prepare my body, I’ll be getting a second opinion.

Clean Bill Of Mental Health

During the time that I lost feeling in my hands, I also had a huge up-tick in seizure activity. I was so scared about how many seizures I was having that I actually contacted my therapist so that if any of them were pseudoseizures (like many were back when I was working with EMDR), I could do the work to stop them.

Well, it was good seeing Karolina for the first time in over 6 months if for no other reason than I enjoy talking with her. I was very pleased when she let me know that I am not experiencing pseudoseizures and that I am in such good mental health that she doesn’t want to hear from me again unless I am going through some difficulties and really need her or have some happy news to share with her.

I talked to her about all my worries (none of which were irrational automatic negative thoughts!) – about what could happen if I lose all feeling in my hands and I’m holding my baby, and she said that it’s a legitimate fear, so my best course of action is to be extra careful to pay attention to my body and be safe with the baby. You know. The baby I don’t actually have yet.

My current challenge is to only worry about handling things when there is actually something to deal with! No fighting ghosts. My real job in all of this is to be fully present in the now and to continue to practice good self-care. So far, so good.

Cheesy, gooey goodness…

On a completely different note: I’ve been thinking more and more about how I really miss cheese when we’re being strict with the paleo diet.

Don’t get me wrong — I know the plan was to be strict during lent, but when you’re dealing with an MS exacerbation, you don’t always have the time or energy to cook and clean the way you need to in order to be eating clean. I have to confess, I’ve had pizza this week… more than once. And I don’t regret it even a little.

I did, however, decide, on a whim to google “paleo cheese” and was surprised to see information pop up! Apparently, there are a kajillion different kinds of vegan cheese that also fall under our paleo guidelines. (Ok, so apparently a kajillion is a term in my mind that means “more than 20.”)

To celebrate this, I created another board on the Paleo Compendium just for paleo cheeses.

The one I’m looking the most forward to trying is this Velveeta-wannabe.
vegveeta

I’m hoping it’ll actually be melty and good to use when making enchiladas or jalapeno poppers.

I’ve also been thinking that I should create a graphic for the Paleo Compendium that folks can use to link to it.

MS Walk 2014 – Chicago Lakefront

It’s been a few years since I participated in the yearly fundraising efforts of the National MS Society because of seizures. For almost 5 years, seizures stopped me from feeling comfortable with exercising. Heck, I didn’t feel comfortable even walking anywhere alone. I didn’t feel safe. Fortunately, this year, I’ve overcome that fear.

Nowadays, I regularly hit the gym 4 days a week at least. Some days, I’m even so awesome that I can bike 12 miles in 45 minutes! 🙂 But I’ve also had a few days here and there where I’ve ended up seizing while on an elliptical strider or during weightlifting, and have had to go home. 😦 At least I tried! No matter what I’m doing when I’m at the gym, the goal is to honor my body, so I work out with Adam and am very careful not to over-do it.

Yesterday, I created a team for MS Walk 2014! It’s Team MS EL Redux, named after the support group that I participate in on Facebook. You don’t have to be in the group to join us or even in Chicago! You can be a virtual participant and help us raise funds if you’d like to.

I also personally registered both Adam and me for the walk. Here’s a link to my personal fundraising page. I’d really appreciate it if you would donate! And if you don’t have the funds to donate, don’t sweat it. I’ve been there. Please share the link! Every little bit of promotion helps!

Here’s a shorter link: http://main.nationalmssociety.org/goto/rachaelshapiromajka

Hope you’re having a great day! Thanks for stopping by. ❤

What’s shakin’? (Not me!)

msawarenessmonth
I can’t believe it’s already Friday of MS Awareness Week (though the whole month is MS Awareness Month), and I haven’t done a blog post. That seems kinda wrong.

To be fair, however, life has been challenging this week — lots of seizures. It was like I was back in Glendale when I was first diagnosed. I was just having them over and over again in what felt like a loop.

I called my MS specialist on Tuesday, but I haven’t heard back from him. His nurse called and scheduled me for the soonest opening, which is March 21st… two weeks from today. (He’s actually booked up through June!) I think I’m going to call and cancel it. I was having really intense pain in my lower back and unrelenting seizures when I called in the first place, and now, I’m pretty much fine. I only had 5 simple partials yesterday, which is nothing. I can handle some facial twitching.

Today, so far, I’m seizure-free, and my back feels fine. I was really worried when I called that I was still having a relapse, even though I took a medrol dose pack about 2 weeks ago. My body’s been acting so weird. I’m glad that it was just a pseudoexacerbation. I must have been fighting off a cold or something.

Increase Your MS Knowledge: What is a pseudoexacerbation?

From Health Central – “A pseudoexacerbation is a flare up of existing symptoms caused by another medical event, such as a urinary tract infection, flu, or elevated body temperature. Pseudo or not, it can stop you in your tracks as sure as any true exacerbation. However, new lesions are not being formed and your MS in not really progressing.

True MS exacerbations are caused by inflammation in the central nervous system which damages the myelin and disrupts the transmission of nerve signals, causing a wide variety of symptoms. This type of event can cause new symptoms and permanent damage, lasting from 24 hours to several months. Severe exacerbations may be treated with steroids in order to reduce inflammation and shorten the length of the exacerbation.”

So, for those of us with MS, we get to feel awful while also questioning ourselves to figure out if we might be sick or too hot or whatever before we even call our doctors to treat the problem. Basically, if I feel awful for 3-4 days, I’ll call a doctor. Otherwise, I assume everything weird that happens in my body is a pseudoexacerbation.

Pseudoexacerbations annoy me less than pseudoseizures.

Since I only tend to have seizures nowadays when I’m also experiencing other MS symptoms, I always think of my seizures as being part of MS… but when I initially began dealing with seizure disorder, doctors suggested that I also see a psychologist. While they could identify the epileptic activity that caused the simple partial seizures that I experience, they were stumped by the time travel (complex) seizures and thought it was likely that they were caused by subconscious psychological issues.

For over a year, I saw a psychologist and worked with EMDR (Eye Movement Desensitization & Reprocessing) Therapy. I’ve written a lot about it. It was immensely helpful to me. In fact, the majority of my seizures stopped, thanks to the work we did.

To give you an idea of how intense and repetitive the seizures were on Monday, I actually went so far as to contact my most recent therapist to see if we could do some work (potentially with EMDR), just in case any of these recent seizures are being caused by my subconscious. She said it was good self-care, so even though the vast majority of the seizures have abated, I’m still going to see her.

(Fun fact: I found out, after already starting the therapy, that the doctor responsible for the creation of EMDR therapy is actually the mother of one of my good friends. That was pretty cool to me. I’m a big fan of her work both in the realm of therapy and as a mother, because her son is a truly awesome person.)

46 Days of “Strict” Paleo

It’s Lent! You know, the time between Mardis Gras and Easter.

This Lent, instead of giving up caffeine, Adam suggested that, just like in 2012, we be strict with keeping paleo. We’re not doing another Whole 30 or attempting a Whole 46. We’re just doing regular Paleo, so we can still have a little honey and maple syrup here and there. In truth, I am pretty sure my Whole 46 was just regular paleo too, looking back on it.

The big challenge for us will be not cheating on the weekends, when we’re out with friends and family, or when we’re feeling sick. (The craving for wanton soup when I’ve got a head cold is damn near undeniable.)

To make things easier for us (and anyone else who happens to be interested), I created a meal plan for Lent. I even made sure that on Fridays we’re scheduled to eat seafood and not meat, for all the Catholics out there who still follow that rule. (Fortunately, Adam’s as devoutly Catholic as I am devoutly Jewish. He doesn’t really care much about following a tradition that was created to help the fishing economy just for tradition’s sake. I can’t say I blame him. It’s not like I keep kosher.)

Tonight’s dinner is Garlic Roasted Shrimp with Zucchini Pasta.
garlic shrimp

Hope you’re all doing well!