Liz

So, I always look at the information, which is probably why I was interested in the different studies. And I don't believe every study that's out there. I think you need to look at the information, look at how it's presented, look at how many people were in the study. And is the information that they're reporting the same as what they were actually testing for is another tidbit. Also, when I said earlier on my husband and I just went through the different drugs at the time and picked the one with the least amount of side effects, well, then you really start to get information on the studies and the side effects. And just because a side effect is listed doesn't mean that 100% of those people had it. It could have been one person out of 20,000 people, but they were in the study. And now, it is a side effect, because that person may have had it even if it wasn't actually due to the drug itself.

Just the neurologist that I see is with the [INSTITUTION] here in [LOCATION], actually, [INSTITUTION], too. So, these are the two main hospitals in our area. Both of them are teaching hospitals. They both have been very involved in and learning and so forth. So, if he's able to be involved in a particular study, then they will work on that. So, it just happened to be that, when I had an issue and was switching over, there happened to be a particular study that I fell into. And so, he would just—after I made the decision, though. So, after I decided to go on the Tecfidera, then it was probably a couple of days later. He called and said, “Hey, we have this study. Would you want to be involved? You fit into it, because you chose this medication. We have the study. We want to go for it.”

So, in signing up for the study, it was all laid out. There was a whole chart about, week one, you get the MRI. You have to do certain blood work. You have to do all these different tests and so forth. And then, say, week six, you get these other tests done and so forth. So, the whole study was laid out as far as what was required of me and where these tests and things would be conducted. So, I knew up front whether or not I was going to be able to hold up my end of the study or not

So really then it would have just been the medication, whether I would be able to tolerate the medication or not. I did have a reaction the first time I got the infusion, because the Ocrevus is an infusion at this point. So, they knew what to do, and it was fine. I did get sick. I was due for another infusion 2 weeks later. That's how they kind of titer to you in at first.

I wasn't diagnosed then. But I went through a phase where, for maybe a good 3 months, I was just absolutely exhausted and fatigued and struggled to stay awake throughout the day.  And there are cartoons where the girl kind of gets up and flops back over in the morning. And I have always been a person that's active and energetic. And that was me. I would go to bed just exhausted. And then I would just wake up exhausted. And no amount of sleep would help it at all.  And I would sleep through a good bit of the weekend as well. I mean, my family would even comment. All you do is sleep on the weekend.  And during the week-- so I didn't even work full-time then. I would come home from work at may be 2 o'clock and pass out. And I would have trouble getting home from work.  And I lived maybe less than 10 minutes from work. And I struggled just to stay awake long enough to get home from work. So, I would drag myself in the door and fall on the couch and fall asleep until my kids would come home from school and try to bump me. “Hey, we're hungry. You're going to get up?” And there were times I could not get myself up. So, it would be 5 o'clock. I'd be trying to drag myself off the couch and barely make it through what I needed to do in the evening for my family before I was in bed again.   

He was pretty sure that that's what it was, that it was MS. We at least had somewhere to go. I at least had some direction in which I needed to go. I kind of told my husband at that point that I might have thought it was MS, but neither one of us really knew much about MS or what that meant. And so, the doctor, the neurologist, would call and say, you need to come into the office. We need to do this. You know, we need to talk about this. And he wanted me to bring my husband with me. But I didn't want to bring my husband, because it just sounded so grim. He wanted me to come into the office. And I'm like, well, I'll just go by myself. Because I'll deal with things first and then kind of fill my husband in later. So, it was kind of strange. He said that there's a few things. First of all, he was questioning why I didn't bring anybody with me. But he didn't know me.  

I trusted the MS Society, because I felt that a lot of where their information came from, it wasn't just their opinion, that they had ways to back up their information. They had history. They had experience. They are involved in the research opportunities and so forth. One thing that they do is-- they did do, anyway, is once a year they had a conference or so, where the specialists in the area would come and talk. You could ask questions to different neurologists, different therapists and so forth.  And they had drug reps come in and then people from, whether it's the library or different care facilities. So whatever kind of help somebody with MS might need, they were there. People that might help you drive or take your test again.  If your MS was more progressed, maybe you needed help with different at-home equipment or at-home services. You were able to talk to therapists. And there's a dance program for MS people. There's just a variety of information.  So, by going to that, as well, I was able to just walk around and talk to everybody and grab information. So, I've been able to pass that information on to other people. And then I just gathered all that information for myself as well. 

I think probably more of the trouble comes with, because you're dealing with specialty pharmacies. You don't just go to your regular pharmacy to get these drugs. You have to deal with the specialty pharmacies. A lot of it is online or over the phone. So, I would spend more time than I would like trying to get a hold of them to get the prescription refilled and so forth. That's where the issue comes into play. I didn't have so much trouble with the insurance company, like I said. It was trying to work with these specialty pharmacies and then figuring out which pharmacy we were supposed to use for the insurance. That's another issue. 

So, there is the MS specialist, and he has his staff, so his nurses and so forth. The medication that I take now is an infusion. So, I'm fairly close with the infusion nurses.

I have a couple different physical therapists, an occupational therapist, my family doctor, who kind of coordinates and keeps everything together as well. And then I just have all my doctors. So-- I have the eye doctor, who does their aspects of it and keeping in touch with the neurologists and so forth, whether it was that depth perception and how MS does change-- it can change, I should say, your vision as well. So, you know, that's his specialty. So, he keeps track of that. But I just have a wide array of all your different specialists and doctors and everybody I have to say, for the most part, coordinates together should there be an issue and so forth.  

INTERVIEWER: And how are they connected to each other? Are they part of a specialty clinic, or are they just through you connected?  

At this point, most of it would be through me other than actually with the MS, so the infusion nurses and the MS nurse and him. And actually, the MS Society is connected with them as well. So, all of those and, actually, the physical therapists know, too. So, they're all, for the most part, connected. And then through me would be the other doctors, whether it's a dermatologist or the optometrist. 

It's affected everything. So just first of all, I don't sleep well. So, it has affected my sleep. So oftentimes, when I try to get up in the morning, I'm still groggy and tired. I have trouble just getting up. So, I get up, and then trying to get my legs and things moving correctly to walk to the bathroom-- and then I have to come downstairs in the morning. So, I hold onto the railing. And I'm leaning against the wall and kind of making my way down the steps. I'm holding onto the railing for dear life to get up the steps-- in the morning. Carrying the laundry up and down stairs is another issue. And I just adapted, so I'm maybe dragging the laundry basket down behind me to get down the steps or one step at a time trying to get the laundry basket up the steps. That's if I'm doing it. I've also gotten to the point where I'll just ask my kids or my husband to take it up, obviously. But I've given myself a black eye trying to blow dry my hair. It's affected in that way. I burned myself trying to curl my hair or do my hair, because I don't have the strength to keep my arm up or hold the equipment well. So, some days I do fairly well getting makeup on, and other days I don't do as well. You just try not to poke yourself in the eye. So that's where the occupational therapist comes in. Cleaning the bathrooms-- so I ended up getting a battery powered scrubber, because it would just be exhausting for me to just clean the shower itself. So, I would have to clean part of the bathroom, and then go take a break and do something else, and then try to come back and finish cleaning. Just because it just-- I don't know. It was just exhausting. Taking a shower is exhausting. So, I try to do that at night before I go to bed. In the kitchen, I'm trying to cook and do different things. Sometimes just putting things away is difficult. I'm trying to put different pans away and so forth. Trying to hold the knife to chop vegetables or whatever, sometimes it’s difficult. So sometimes I'm trying to use different choppers and other things to help out in that respect. The dishwasher, I can't tell you how many things I've broken putting into and taking out of the dishwasher. It affects so many different things. I used to have a garden. I can't physically do the garden anymore. If that was my only thing that I did-- maybe. But I can't. Being out in the heat is exhausting, so it just got to be too much. So, I used to love yard work and taking care of things, not so much anymore. So really, it's just a lot of things every day, probably all aspects of life, are affected by it.  

It has impacted my life greatly. Like I said, I was able to get through a marathon. I'm not a wonderful athlete or a major runner by any means. So that was a major accomplishment that slowly and surely has been taken away. The last marathon that I ran was probably a year after I was diagnosed and was just in absolute nerve pain from head to toe. And that's when I realized that you can throw yourself into a pseudo-exacerbation. I thought, at that point, I had switched medications. I went from the injectable to-- that was another study that I was in for a different medication. And because I felt that maybe I didn't understand the medication fully, that possibly I was having a reaction to the medication. As it turns out, it was just my body could not handle the stress that I was putting it through. And so, for a few days, I was stuck in, like I said, a pseudo-exacerbation, which my doctor yelled at me at that point. Because I was like, could it have been this? No. He's like, “You did too much. You need to realize you need to cut back. And you can't do that anymore.” So, I don't run much at all anymore. I'm thrilled if I can run a couple of miles at a time. I do wear a brace for any activities for the foot drop. And I've been through several of those.  

However, you can't really understand it until you experience some of the strange sensations and difficulties that MS brings. Even with my husband, I'll try to just give glimpses into how it feels. I do remember one time online somebody had an article about using a bicycle. Actually, I think what they did is they had bikers, athletic bikers, possibly-- cyclists I should say. And they took their bikes and maybe dented the wheel, so that the bike did not pedal correctly. It didn't ride smoothly. They changed the handlebars. Maybe the handlebars were crooked. And the grips-- put knobs on them, so that it might hurt their hands or so forth. So, they took their cycles and screwed them up for the most part. And then had them-- OK, go ride 10 miles. How do you feel now that you're trying to ride? Well, you know, I'm wobbly. It's difficult. It's hard to pedal uphill and so forth. And we just kind of use that to explain. Well, that's how sometimes a person with MS feels. And I was telling my husband, I feel like I'm dragging my leg along. So put a 40-pound toddler-- a little kid might hold onto your ankle. All right, walk. Let's hike 10 miles like that and see how that goes. And they're pulling on your foot. You can't raise your foot the way you want to. So, you know, you just kind of come up with ways like that to explain how you're feeling. Sometimes it's more of a tightness. So, it felt like I just had on a pair of gloves that were just way too small. And that's how my hands felt, was just that pressure, whether it's the prickly feeling, itchiness. And I think everybody at some point has felt numbness if you've sat on your leg too long or so forth. But you know incorporate all those things together, and then try to go out and work, and drive, and do everything they would typically do. It all becomes more of a challenge.  

I think one of the things actually that helped me, I volunteered with the National MS Society to deliver Christmas gifts that first year to people residing in nursing homes in my area. And it just really opened my eyes to how MS can affect everybody differently. So, there were people of all different ages. I think there was someone that was younger than myself who resided in a nursing home and was confined to a wheelchair.  And you know, there were older individuals who-- everybody has a different experience, whether they're bedridden. It went from someone who was bedridden on feeding tubes and so forth to someone who physically was not so much affected as they were cognitively and mentally. So, I just got to see and talk with people of different ages and different abilities and see how it just really affected everybody differently. So, I was able to see that maybe it didn't need to be as bad as [NAME], but there could be other difficulties and things to worry about as well. 
---
And I know that I have gained so much information from other people across the board, whether, you know, like I said, visiting the people in the nursing house that had MS-- that was big. That was a huge thing to just sit and talk with everybody to get their perspective, because they had all been living with it for so many years. 

I think I probably could have done more or been more involved or just probably been a better parent without this. Because it affects so many areas of my life, it has kind of taken away from how much time and energy I can give to other people. And yeah, I think I could have probably done a lot of things a lot better without the MS, whether it's just thinking and doing and just being involved as much. I just wasn't always able to be there when they could have used a little bit more.  

And just realizing that your value or your worth is not based on what you can or cannot do-- it is based on the person that you are. So maybe I can't run this race and do those things that I wanted to, but there are so many other things that I can do.  And I think that I have a lot of opportunity, because of the MS. I'm fortunate to have been able to do those different studies and to help in that respect. I have met some phenomenal people that I would not have met otherwise and different contacts. I hope that I've been able to help other people deal with their MS. And I know that I have gained so much information from other people across the board, whether, you know, like I said, visiting the people in the nursing house that had MS-- that was big. That was a huge thing to just sit and talk with everybody to get their perspective, because they had all been living with it for so many years. So, it does change your perspective. I have changed in a way that I usually focus on tasks and getting the work done. This is what I have to do in a day. And I want to get 15 things off of this list done. Now, I'm happy to do two things off the list.  

I was always happy that I had a diagnosis, because then I had a name for it, and I knew what it was and then you can kind of face it head-on. And you know what you're dealing with, whereas if you don't-- and I know people like that who say, "I don't want to see my MRI. I don't want to know if it's getting worse. I don't want to know anything." Well, then how do you deal with it? How do you minimize it? How do you make it better? How do you know what your future is going to hold or so forth?  So, I think that gaining as much information as you possibly can about yourself and about the disease and what you're looking at can certainly help you to live the best life that you can. 

Be patient. I'm going to get a crabby, and I'm going to get tired. And you know, just to be supportive, like I'm going to trip up. And I think that's where my husband has probably gotten to the point where, if I do trip and fall, I'm frustrated. I'm angry.  And so, his reactions then are different. So, he's not getting mad at me. He's not making fun. You know, I mean, we do eventually laugh about things. And you know, it is what it is.  And he knows it's not my fault. So, he knows it's not anything that I'm doing. So, I think that the patience and just knowing that I'm going to need help, and I'm not going to want to ask for that help.