Time’s Not On Your Side

I spend a lot of time feeling like I’m running out of time. This year will be 10 years since my first MS symptom. Had I known it was going to turn into MS would I have done things differently? Maybe. 

I might not have tried to buy this 2 story house I love so much. I might have tried to have a baby sooner. Because a lot of days I wonder if it will be soon that I end up having the relapse or progression that means I can’t live in this house or that having a baby will be a bad idea. 

I feel like I’m racing time right now and time is winning. I’m tracking everything, I’m doing everything right but I’m still not pregnant and I’m scared that MS is going to take the entire opportunity away from me soon enough. I know that nothing worth having is easy but sometimes I feel like for me, nothing is easy. And I desperately need something to be easy for once. 

All The Diseases

So I haven’t posted about my MS in forever. It’s behaving! In fact it’s behaving so well that I have more time to focus on my other crippling anxieties (yay!) :/

I used to be a hypochondriac…but being diagnosed with MS made me realize that hey, maybe I wasn’t so much a hypochondriac as a person who visited lots of doctors with real symptoms and got told she was a hypochondriac. 

But I’m getting off point. My MS has been so good that my husband and I decided it’s finally a good time to get pregnant. This brings up a lot of insecurities for me. Here’s a fun list! 

  1. What if my MS gets worse?
  2. What if my anxiety gets worse?
  3. What if I can’t get pregnant at all and then face that crushing defeat along with the diagnosis of yet another disease (infertility? PCOS?)

Here’s what’s happened so far: my MS has stayed stable and I’m actually kind of shocked because I’ve been STRESSED THE F*** out! No birth control for almost 6 months and I’m still not pregnant. And my anxiety is getting worse because I’m obsessing about it.

I’m worried about my health in a way I haven’t for years because I’m convinced there’s something wrong preventing me from getting pregnant. I’m also obsessing about my cycles, ovulation, etc and probably driving my poor husband crazy. 

Anyway, I’m really hoping I get pregnant soon but I’m starting to realize that I will probably be anxious through all of that, and then all of my child’s life, and then FOREVER! 

What’s a girl to do? 

Two Steps Back 

My leg got better over the weekend…I was so excited! And then I woke up this morning and my other leg was numb and tingly instead. I figured it just meant the relapse was still ongoing and informed my MS clinic. Well now they want me in an mri this week. And now I’m really scared because they seemed more concerned than they did last week. This is starting to feel like some horrible joke. What happened to my well behaved MS? Is this going to cause permanent damage? What the hell am I going to do?

Day 6

Day 6 of my relapse and still not feeling any better. I know from past instances that mine usually last around 3 weeks…which I’m really not looking forward to.

I said to my husband yesterday that I kinda wish I had that “click” remote from that Adam Sandler movie because clicking past the MS relapses doesn’t sound too bad. And he said that even though that movie was kind of lame and sad, the point was that no matter what you get in life, that’s all you get. And the point was that looking back you probably don’t want to miss or waste any of it, even if it was bad. And maybe that’s true.

I guess even though I’m usually pretty pessimistic , I was actually holding out hope that I’d go a long time between relapses and that maybe I’d cope better when I had them. Though I guess that takes practice too…yay, practice?! 

I mean, I guess I’m functioning better this time, even though I would prefer to have optic neuritis again to weird leg numbness and right arm weirdness…but then again, maybe I wouldn’t if I actually had it again instead. It sucked pretty bad too.

I spend an inordinate amount of time pondering which symptoms would be best if I had to have them forever…there aren’t many, but if I could pick and choose, I guess it would be foot tingling lol. The list of symptoms I hope never to experience however, is super long and daunting. I guess what I have now isn’t one of those, so I’m lucky in a way…ugh.

Hopefully day 7 treats me better.

I Really Don’t Want To Be Having A Relapse Right Now…

I’m sure any of us who are are thinking that same thing right now. 

8 months since diagnosis and 6 months since going on Copaxone. Does that mean it’s not working? I don’t know. I do know that all the other DMDs scare the shit out of me, so I wouldn’t know where to go from here anyway. I also know that I didn’t start on the full dose of the drug until late August. So now I’m kind of kicking myself. Is it my fault?

All I know is that MS was finally becoming “ok.” Okay I’m the sense that it didn’t consume the majority of my thoughts. And now it will again. For how long this time? 

Before diagnosis, I obviously had it, and I know that symptoms didn’t come this often. Though I know stress is bad for MS, so maybe the stress of dealing with having it made me more likely to relapse sooner.

This time it’s my leg. My leg! What not my face again? No, I have a numb thigh…for how long? It’s been 4 days now so probably awhile.

It’s so hard…I was feeling stable. We decided that we were going to try to get pregnant soon. And now I’m scared again. What if I can’t take care of a baby? What if it makes me worse?

I thought I has a good prognosis, but 8 months between relapses, a new symptom, and being on a DMD…I’m not so sure now.

Oh, and our first dog passed away 2 years ago today. So, I’m just looking for a bit of a break in the clouds this week.

Long Time No See

I guess since I have MS, that title could sound sketchy. Don’t fret, not blind. Feeling less mentally blind than I’ve felt in awhile as well.

So, I’ve been missing for a couple of months, but I can’t promise I’ll be back permanently or as often as I was before but hopefully I’ll get on here a little more often than quarterly.

I felt like I needed some time off from the blog, from the MS for that matter. Luckily I still have good enough health that I don’t have to think about it because I don’t have constant symptoms. However, my anxiety often thinks it’s a good idea for us (me and my anxiety) to think about.

Anyway, updates! 

I’m doing well on the Copaxone. Used to the thrice weekly injections. No side effects except injection site reactions that are either better than previously or I just don’t care about them anymore.

Saw my MS doctor again about a month ago. Nothing crazy to report there. I love my doctor though!

I had been getting wrapped up in anxiety again so I was back at my therapist, working on it. Feeling like I would never get out.

Then something magical happened last week: vacation! The first vacation we’ve had since this MS mess started and my husband graduated from college. Finally! Some time to process and get my head right! I haven’t taken any Xanax in over a week now, no need. And not taking it equaled no rebound anxiety and no worries over whether I need it to deal with my MS or my anxiety! I’m free!

I’ve said before that I hate psych meds…I really do. That’s not to say they don’t have their place…I needed it for awhile. Panic attacks about MS aren’t fun. But I was still scared to go without it recently because I was still so anxious the day after I took it…that’s rebound anxiety. I didn’t take it often enough to be physically dependent on it but I was on a feeling roller coaster of “oh, it makes me feel better and I have MS so why should I spend my life feeling shitty?! Should I take it or not?”

So yes, anti anxiety and antidepression meds have their place but are not a solution on their own. Eventually you have to deal, you own your shit, you find a way to move forward. And it’s hard as hell with MS. I’m not saying that I have all the answers. And the truth is you have to find your own any way…and it may take you more or less time than me. It may take me more time that I’m just not aware of yet (hopefully not.) 

I’ve been thinking about meaning which led to tattoos. The one I never got for my dog who passed away almost 2 years ago now. Our first dog. So, since May, my husband has a portrait on his calf and I’m 3 sessions into my sleeve/portrait for him. It just seemed like the right time to finally do it. I needed to make something beautiful to remember him.

My forearm so far:  
My portrait so far:

And my husband’s portrait:

I know a lot of people don’t like tattoos but this whole experience has been very cathartic for me. In regards to my MS too. I’m not going to stop living. I’m going to keep creating a life to be proud of in one way or another.

Keeping All The Balls In The Air

I’ve been good for the most part lately. Trying to be out there living instead of reading all the stuff you can find on the internet written by people who aren’t living, but it’s hard. I enjoy stuff again, I’m not always 100% terrified of MS. But I wouldn’t go as far as to say that number ever gets to 0. I hope it does sometime. Sometimes I feel like my life is such a balancing act and my internal monologue is always prattling on to remind me of all the issues I need to remember. Sometimes I wish it would shut up but without all these things I have to do to maintain any semblance of “normal” I would be a big old wreck.

  • Remember to relax, you have MS and anxiety.
  • Don’t be a perfectionist, nothing is ever perfect.
  • Take your Xanax when you need it. Quality of life is important as is keeping anxiety down.
  • Don’t take too much Xanax you junkie!!
  • Take more amitriptyline to help with anxiety and sleep.
  • Oh, since you’re taking more of that, drink enough water or you’ll get constipated.
  • Make sure you eat healthy too, it’s good for anxiety, MS, and the fact that you’re overweight.
  • Exercise even though it stresses you out and you don’t feel like you have time because otherwise you’ll gain weight or become disabled faster.
  • Monitor symptoms and try to distinguish whether they are MS or anxiety related so that you can tell your neurologist or your therapist, but don’t freak out about the symptoms…it’s not that big of a deal.
  • Don’t be crazy.
  • Even though you still want to have sex, it seems like you may be doing it less since this diagnosis, so try to fix that now because you don’t want to be a completely boring and all the time sick wife.
  • Ignore those annoying injection site reactions.
  • Get enough sleep, don’t get depressed.
  • Don’t think about it all the time.
  • Oh, and just remember, even on the good days, that it’s all downhill from here. (That one’s the worst.) 

New Goals and What’s Next?

Our house is almost completely painted now, they are coming to finish the trim on Monday and Tuesday. I’m so happy that colossal project is almost over. The deck rebuild took us most of last summer and is be happy to never work on it again. Next time we’re paying someone! Anyway, remember it’s not done yet, but here’s a little preview:

  We were a little worried about the brick red but I’m so happy we did it!
My husband is coming up on 2 weeks left until he’s officially done with college. It’s been about 6 years in the making because he’s had s demanding full time job as well as all of these house projects and spending time with me. We’re so excited it’s almost over! No more nights and weekends spent on homework. This year we sucked it up and took the last 5 classes back to back (it’s the University of Phoenix online) so he basically hasn’t had any time off since Christmas. Add in my MS diagnosis and you get one interesting and crazy 5 months.

As far as me and the MS? Well, I’m adapting well to the copaxone and don’t get scared when we have to do the shots. I guess it’s not fun but it’s pretty much just routine now. My energy level is good. I’m seeing my therapist again right now to work through this stuff and that’s probably a good thing. I need to start exercising again but I have been pretty active lately and I’m actually meeting my step goal again.

So, what’s next? Well, we’re going to put AC in! Hopefully by July before it gets too hot. With or without MS, our house gets godawful hot in the summer. It was 78 outside today but it was 79 inside! We haven’t run the furnace in weeks! How does that happen?! Anyway, if there were a silver lining to MS, it’s that we can write off the AC on our taxes as a medical expense.

Also, getting a new tattoo in a couple weeks! 

I hope everyone else is having a great weekend!

Pity Party and Rant of the Day

So here’s a little story about my day today that adequately sums up my frustration with MS.

I woke up feeling fine, started working early and got a lot done today. I was happy that I got done at 2:00 because that meant I’d have time to clean up the kitchen and make cookies for my husband to take to work with him tomorrow for his staff meeting. This is just something I enjoy doing sometimes for him and them.

So, I mixed up my dough and made one pan of cookies when suddenly, I get dizzy. This happens a lot. It’s not like it makes me fall over or unable to do anything, but it sure makes everything suck.

But this is what frustrates me. There was no indication or feeling of tiredness to tell me I shouldn’t make the cookies today. And then, when you’re in the middle of something you can’t just be like, oh well, I tried, here’s 8 cookies and I’ll throw the rest of the dough out. And since I can push through, I did, but it made the “fun little thing I was doing to be nice” not so fun anymore. Because it sucks to be dizzy.

And I didn’t clean the kitchen because, well, I decided to cry instead. Because it seems like that’s pretty much what MS does. It takes everything that used to be fun and makes it not fun. And it makes you not fun. And them eventually, I assume I will just end up alone because I won’t  really have anything to offer anyone with my sour disposition and inability to take on any task that may last longer than 5 minutes.

/end rant

Okay, but seriously, will I ever know when it’s not a good time or will I forever have to either throw away half of my cookie dough or learn to tolerate whatever symptoms come up while doing anything? And, can anything really be fun when you’re having a symptom?

Where Does The Time Go?

I feel like I get overwhelmed so easily right now. Little things shakes me up. I’m too type A for this whole MS thing (or maybe that’s why I have it in the first place, ha!) 

Like everyone can tell me to relax and don’t worry about cleaning the house or prepping food or whatever but I “need” these things to be planned and part of my schedule. Maybe I’m a weirdo and need an OCD diagnosis but I like to clean the house on Wednesday and if I can’t do it that day, the whole week feels out of whack. I’m not go at going with flow, doing stuff when I have time or I feel like it. What kind of haphazard world are we living in?! 

I need to know my plan for the day, week, year…I don’t like to do unplanned things at the last minute. I can be spontaneous for fun but all my “have-tos” have to be planned.

Previously in life, these quirks were okay because I could pretty much always do what I planned. Now I can for the most part but I also know that I need to be cognizant on my energy levels and how I feel on a day to day basis. And it’s hard to judge if pushing through and doing my plan is going to backfire on days I don’t feel good. I also have to manage my stress, which is hard because I get stressed when I don’t get my to-dos done but I also get stressed when I’m crazy busy trying to get them all done. 

Also, I made an appointment with my old therapist at a low point 2 weeks ago when I thought I was never going to feel better but now I actually feel okay now, albeit stressed because I have too much to do. So, while some refresher counseling may be good for me, I also feel like I don’t have time to go, so now I’m stressed about that too.