I had my annual MS check-up at the hospital last week. I dread the appointment anyhow, but this is also one of the down sides of living on an island (with no hospital!). We had to get up at the crack of dawn (or before!) to catch a ferry to get to my 8am appointment in Seattle. I whined. A lot. But Rick takes me to the appointments and we caught the first boat we tried for (we left time to miss a boat or two, just in case it filled up or cancelled a run) and got there with time to spare and THIS was the view from the ferry. The upside to an early morning ride.
Once there, I had almost three hours of MRIs and then a little break before my regular appointment where they ask me a bunch of questions, tell me the results of MRIs and blood work and such and test my reflexes, strength, walking and all that jazz. Another upside…all is well. No disease progression (since diagnosed almost 3 years ago) and I have no major ongoing issues.
So all of that dread (and whining!) for nothing.
Usually Rick and the kids come with me and stay, but with such a long day of appointments this time, I suggested he just drop me off and come back in the afternoon to get me. After my appointment, we ran a couple of errands (because it is always good to make extra use of time off-island!) and we ate dinner out in Seattle before returning home and being treated to another beautiful view from the ferry.
Even the harder days have a lot of lovely in them.
I am really late on this, but one year ago, as of December 19, 2013, I was diagnosed with MS. I am happy to say that that date totally passed without me even thinking of it! Now, I will say, I did think of it a few days prior, and we were super busy living our one wild life and moving, but STILL. A year ago I would not have believed that I would just forget the trauma of that date, and the weeks before. About a week before that anniversary, I saw my neurologists at the Rocky Mountain MS Center and had a great update. I had my one year follow-up MRI, and was glad to hear that things look GOOD. No new lesions and no active lesions. They consider my case to be relatively mild and my prognosis to be good, based on this past year. They are happy with the medicine they have me on, so the plan is to continue with that.
And how do I FEEEEL? Well I mostly feel pretty good. I do have some residual weirdness on my right side and my hip gets wonky as the day goes on, but all in all, I am doing great. Just wanted you to know. 🙂
I have so little to post these days.
I have been having a lot of hard days but I just hate saying that. I really appreciate all the kind emails, comments, thoughts and stories of peeps you all know who live well with MS. Actually this might be a strange request but if any of those peeps you know are interested in talking to a new to MS person, I am really interested in talking (or emailing) with them. I am a person who likes a lot of information and am very interested in hearing how some others manage this. I am still having trouble even believing that I have MS and I get sad sometimes.
I saw a Neurologist last week and learned that according to my MRI’s, I have probably had this for a very long time, this is just my first flair up. That is such an interesting thought because it means I already know what it feels like to live with it, just not to live with flair ups and the after effects. The after effects are what I am struggling with right now, but I know it just might take more time to realize more improvement. My strength is back to a large degree on the side that lost so much, but about 1/4 of me is still numb and electrical/tingly and I am so disappointed about that.
Anyhow, for now, I am just still adjusting to all this and giving myself more time to improve.
(blurry but recent!)
A few days before Thanksgiving, I woke up and my right side abdomen was numb. Weird. But, I thought maybe it was a reaction to an antibiotic I had just started taking. I switched antibiotics but the numbess continued and then came an unbearable stabbing pain in that area. The numbness eventually began to spread down my right leg and went from front center line to my spine in the back, never crossing to the left side. The stabbing pain turned into a very tight squished feeling in abdomen and even more in that hip. My right side was weakening and my walking was becoming wonky. Four weeks, five doctors, one ultrasound, one hidascan and eight (!) MRI’s later, I was diagnosed with MS.
The thing is, four days before going numb, we were vacationing in Seattle hiking around, catching ferries, walking from hotel to the Space Needle…I was FINE! Whew. I am still trying to wrap my brain around all this.
But what I want you to know is that I am doing really well. I am on some big gun meds right now, trying to get me to a remission phase. I hear that (maintanance) meds for MS are really good these days and my fate is not sealed by this. Some strength has come back since beginning meds, although I still have a lot of numbness and tingling. The tingling is like an electrical shock feeling and sometimes my feet feel like they are in buckets of ice even though they are perfectly warm to the touch! Isn’t that strange? My brain reads it wrong right now I guess. I am hoping for lots more improvement and I will see a top neurologist next week to see what he suggests to manage this situation.
The physical part has been challenging (and thank goodness for Rick and some of the rest of my family!) but the emotional part might be what takes the longest to adjust to. It is so odd to be fine one minute and not the next. And to not know what is coming. There are different kinds of MS, with the remission kind being the most common and somewhat easier to live with, but we won’t know what we are dealing with for a while.
For some reason, the tears sometimes come right before falling asleep and also right when I wake up in the morning. But honestly, during the day, I am mostly fine and even happy. By the time the diagnoses came, I thought I might have something terminal so when the doctor said MS, there was some relief. I have a friend who lives with MS and she does reeeally well and she and some others have been very encouraging to me. I worry about the unknowns though and would kind of like to skip ahead a few months just to know what is coming. Our house is not great for this so we may be looking at a move. Homeschooling is a lot of stress and time and will I continue to be up for all that? What extra expenses are we looking at? Will I feel fine most of the time or will symptoms linger? Just lots that we don’t know yet, and that is hard for a girl who likes to plan ahead some.
In some ways, this fits though. Although I think the bottom line is that I have never had any signs of MS, hindsight does say that I might have. I have fallen twice (big falls) in the past couple years (I am 40). Once at a movie theatre and once at a large store. Like I FLEW to the ground, my purse flying several feet ahead of me. And get this, the guy I was walking with (store clerk) stood there in shock as I was sprawled flat on the floor (!) and when he recovered a bit he helped me up and then he said oh you know, I fall ALL THE TIME!! And just heehhahaahheehaaa huge roll on the floor and laugh out loud to that! Of course people don’t just fall flat on the floor all the time. But I don’t know, I was wearing cute shoes and I was clipping along and I just thought I slipped or something. But looking back…who does that? So yeah. Plus heat. I can’t tolerate any summer heat. Like I hate summer. Except this past summer I thought I was doing great because I spent a ton of time in the pool with my kids and my mom. But that is just it, I spent it IN the pool. I could not bear to be out of the water. So maybe these, and a couple other things, were slight indicators, but I certainly didn’t have a clue. The MRI’s show that it has been developing for a while though, it didn’t actually occur overnight, even though that is how it feels.
For those that don’t know, it means that I have areas of nerves in my spine and my brain that are stripped or stripping of myelin. The myelin is like an insulation that protects the nerves and when they are bare, they sort of fritz out. The area affected depends on where those spots are. Right now I have a large area on my spine that is stripped and one particular spot on my brain that my doctor thinks is throwing me off. The two aren’t communicating well. This can change. While it can affect all areas, right now I am affected on my right side, abdomen and leg. MS is a permanent condition but there are times when it should be very well controlled. Other times I can have a “flair” which will cause varying symptoms like the ones I am currently having but in many people now, those times are few and far between once they are on the right medicines.
The kids are doing well and getting to spend some extra time with their grandparents. Rick.is.my.lifesaver. I don’t even know if I have words. He takes perfect care of me and although my instinct is to apologize to him for all this mess, he doesn’t seem to want any apologies. I don’t know how it is that he loves me like he does, but he is my perfection and he is more than I deserve. We celebrated our 19th wedding anniversary yesterday and I know how lucky I am to have my hot man.
So the hug? Well it turns out that constant tight squishing feeling around the middle is known as the MS hug. Those who know me personally know that I am not a hugger! The joke is on me. 🙂
Seriously though, this is a very recent diagnosis and I am sure I have a long way to go with it but it has surprised me how comfortable I am with it. In some ways I feel softer around my edges. I have better perspective. I feel like I relate better to people, those close to me and those I just pass by. I see better that we are all part of the same big picture. It is just more obvious now that the small stuff isn’t worth the time it often takes from me. One of the kids was going on about something recently and I felt myself zoning out and just saying I have bigger fish to fry, you are going to have to work some things out on your own. And part of me thinks I should fret about that, but more of me thinks this is ok and even good. We can all stretch a little here. And we are going to be ok.
I have always always been kind of a quirky girl and frankly have worked to hide much of that (probably didn’t succeed). There is some freedom in this for me and at least so far, I am finding some relief in it.
Finally, as a people watcher kind of girl, I know that everyone has to deal with things in their own way. My way has always been open and out there. If you see me, know that I am not fragile, emotionally or physically. You can hug me (it is kind of becoming my thing), you can ask me, you can acknowledge my new normal. It’s all good. And there is nothing to feel bad about. Maybe some harder times are coming, who can know that. Right now we are good and happy.