Rhonda

I enjoy the process of meeting new people, of participating in research and giving back because I feel like that's what people who had MS before me, they're the reasons we have these medications. So, I feel like I'm doing my part for the next, unfortunately, generation of people with MS. I mean, it's not cured. So hopefully I can do my part in helping develop a therapy to make things better, or a treatment to make cognition better, and maybe even make me better.

They sent it to me through DocuSign, something like that. And it was very, very long, a lot of reading. And I'll be honest, I didn't read it all because my eyes will not focus for that long. And they explained it to me, separately, over the phone. And I signed it, and then we went over it again the first day that I'm there for that four-trip one.

The first one I did it was four trips, and that money added up, so I kind of needed it to pay for the transportation. It wasn't really enough to pay because I'd have to pay paratransit. Then I'd have to pay another service to get there. And it was like a 16-hour day because even if it's only four hours in the lab, I still have to wait for another bus to come and pick me up because of what it is. It's kind of like a paratransit travel bus. It goes all over the place dropping people off for medical appointments in the city. So, it's a 16-hour day. So, I go through that for four hours, and sometimes I have to wait for eight hours. So, you got to pay for food, then you got to pay your way back home. So, it adds up. And a lot of times, the money they pay you doesn't always cover getting there. And I'm lucky I didn't have to pay for parking because parking was like $30 an hour. It's crazy. Yeah. The one I gave the money back to—donated it back, I only had one visit, and I was in a better place financially than I had been in years past. So, I felt that it was important to donate that back because I didn't need it.

Include us old timers. I mean, I’m 51, and I feel like I’m almost irrelevant in the clinical trial world. It’s like, I’m not going to stop having MS because I’m 51. I’m not going to stop progressing. I’m not going to stop relapsing. Why don’t you think of us, even just a small percentage? How do you know it won’t help? Why do you have preconceived ideas that what you’re doing isn’t going to help us? Maybe it will. You never know.

INTERVIEWER: What were those seven years like between when you decided, if I ignore it, it'll go away, and then when you had another relapse? What was going on in that time?  

You know, I held it-- my funny little disease or my funny little things. I would lose vision in one eye. One time I could not straighten my leg. And that's what prompted me to go to the doctor eventually after seven years, is my leg would not straighten. I had horrible spasms, and I had the burning, the vibration down the neck and the MS hug. I gathered, when I went through my history, that I was probably averaging, like, two relapses a year.  

INTERVIEWER: And would you recover from those relapses, or would your symptoms--   
I recovered, yeah.  
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INTERVIEWER: And did you work after that?   

I kept trying to go back. I'd apply, I'd get an interview, I'd have a relapse. In 2015, I was just getting ready to go back, I had the relapse that defined everything and changed everything. And so that was my last attempt.   

INTERVIEWER: What do you mean by the relapse that defined everything? Can you talk about that?   

After that I had very little energy. The fatigue level and the cognitive process just-- it wasn't working. I couldn't fill paperwork out anymore. I'd just sit there and look at it. Things were too small. I'd had three relapses that were back-to-back-to-back. I'd lost my vision. I couldn't walk normally anymore, and I couldn't think. And I'd have all these spasms, and I couldn't sleep at night. So, I can remember specific periods in time where I had a relapse that my life had to start a different way. It was like I had to find a new way to work around different obstacles.   

Baclofen©, Neurontin, LDN. There's a lot. Prozac©. Linzess©, I have IBS. Methotrexate, Folate, three inhalers for asthma. Turmeric, alpha lipoic acid. Fish oil--no, flaxseed oil. Cranberry, D Mannose, a probiotic, because I'm managing neurogenic bladder. There's all these little things that MS causes. MS causes the spasms. MS causes the neurogenic bladder. When you have neurogenic bladder, what do you get? You get chronic UTIs. 

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So, it's always, you need something to treat this, then you need something to treat this, then you need something to treat this so it doesn't cause this. So, it feels like it's a never ending-- I think I take 26 medications and supplements in all, and protein powders because I can't swallow very well, so I'm not getting enough protein, so I had a dietician prescribe that.

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I've always taken a lot of supplements. Over the years they've changed because I felt like some didn't help and some did. Or sometimes I couldn't afford. I had to pick and choose what helped, what I couldn't live without. So, it’s constantly changing. My current-- or I guess he's not current anymore-- he says, “you take too many supplements”. But each one helps something. So, if it helps and it doesn't interfere-- and if there aren't any drug interactions, the only thing that's hurting is my pocketbook, and I'm OK with that. Every one serves a purpose. Like the turmeric helps with pain. Alpha lipoic acid helps with neuropathy. LDN is supposed to help with sleep. I mean, it's supposed to help the pain, but it helps me get quality sleep. Oh, I take melatonin because if you don't get quality sleep, you feel like crap. 

I started with Copaxone©. And that gave me such horrible chest pain I couldn't concentrate at work. I couldn't focus on my patients. I was focusing on my chest pain. So that became an issue. So, I just stopped taking it. I'd tell the doctor. And I also had injection site reactions. I had welts. And he'd say, “Well, you just need to take it. You just have to deal with it.” So, I just quit after six months. And then I changed neurologists because he refused to change to another medication. I changed neurologists. Then I went on Rebif©.
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And I started having-- this is by 2006-- I was having nonstop periods. And the nurse practitioner in my OB-GYN's office said it was because of Rebif©. So, I wanted to change, and he said no. And I wanted to change to Tysabri©. And that's one drug I'd been trying to get on since 2004. Then they took it off the market and they said it's too dangerous. So, then he put me on Avonex©. And that was fine. I tolerated it well. And fast forward to 2009. I'm still relapsing. So, I changed neurologists again, and I go see somebody else. And she doesn't do any MRIs or anything. My last brain was 2004, and this is 2009. My last C spine was 2003. And then she just keeps me on Avonex©. And so, I get fed up because I'm still relapsing. So, I just go off and I go on a paleo diet. I lost a lot of weight. I felt wonderful. Then I went completely blind a few months later. That was 2009. I still didn't want to take the Avonex©, so I just stayed off of medication. And I had another relapse six weeks later, lost my right side. And that's come back a little bit, but it's not normal. It's not like it was before. This was one of those defining moments. So, I stick with this neurologist. And then in 2011, she finally lets me go on Tysabri©. I was JC positive and I didn't care. I just wanted to take this drug. And it was a game changer for me. It was like a miracle drug. But I could only stay on it two years because I was JC positive. So then, I went on Tecfidera©. I continued relapsing on Tecfidera©. Then I was fed up with this neurologist because I didn't want to take Tecfidera. I still kept relapsing. She kept ignoring me. I still hadn't had another MRI at this point, since 2004, even though I should have because I was in the TOUCH program. So, I switch to another doctor in 2015. And she says, well-- and we both agreed we'll wait because we were waiting for a new drug to come on the market. So, in the meantime, I have another relapse and end up in the ER. I have no use of anything. Then a month later, I lose my vision again. Then a month later, I have this scraping all over my skin, bilateral, like somebody's taking a hot something and scraping all over me. So, then she sends me to their MS specialist 70 miles away. It's not the one I was trying to see earlier. And she diagnoses me with progressive relapsing and puts me on Rituxan©. That was like a miracle drug, too, for the first few years. It really helped with fatigue. The relapsing stopped. And then, all of a sudden, in 2017, I started relapsing again. 

I'm in a unique position where I have two diseases, and I have to choose which one I want to treat. And what's next? I'm already on what I have been told is the strongest therapy there is, and it's not working. So, what's next? I can't take Lemtrada because I have a lot of other autoimmune diseases, and Lemtrada can cause other autoimmune diseases, and I don't want any more. It's like a big empty space, and you don't know-- like you're in a big field or something, and you're lost, or maybe like being in a maze and you're lost. You don't know which direction to turn because you don't know what to do. There are no medications on the market that I can take that are going to work. So I just feel lost and disgusted.  

You know, the earlier years I didn't want to go anywhere because it was hard to walk and I didn't want to use a walker. I was too ashamed and embarrassed. And in 2015, I started using a walker, and that just opened up a whole world. And I just went everywhere. And some people even made the comment, “we see you everywhere” because I was at the mall. I went all over town. Me and my best friend, we would just go out and run around. We'd go shopping. We go to the Dollar Tree and just joke around, and go to Hobby Lobby for hours. So that opened up a whole new world for me because it was limitless. I could go anywhere because I wasn't falling down anymore. And I wish I would have embraced that mobility aid sooner because I wouldn't have had to limit my walking time or only go to stores to have a shopping cart so I could hide it. You know, I'm going to lean on the shopping cart so I don't fall down.  

MS dictates what I'm allowed to do, not what I want to do. I make a list the night before of everything I want to do the following day to keep me focused because I can't remember anything. And I could wake up like I did Saturday, and I just felt like I'd been hit by a truck. I haven't felt that bad when I've had the flu before, and it was just MS fatigue, and just being worn out because I had pulled weeds for three days, not even all day, just a couple hours each day. But that was too much for me. So, all day Saturday I didn't get dressed. I just laid down in a recliner and watched TV and slept off and on all day. Yesterday I didn't feel good, but I pushed through, and it was OK. There are some days I can't take a shower because my balance is too bad to get in the shower. I can't wash my hair because I can't lift my arm. I can't brush my teeth because I can't hold a toothbrush.  

INTERVIEWER: Can you talk about what it’s like to tell people about your MS?  
I usually don’t. I hid it up until 2016, which is 26 years. I just didn’t have anything to do with the people that I did before. I mean, my coworkers knew. But if I would see them out in public, I would hide from them because I was ashamed that I couldn’t work. I felt like a bum.  
And I eventually told-- my best friend knew, of course. But I isolated myself from everybody. My family knew-- and they didn’t know for 10 years.  I had such a hard time telling people because at that time, I lived normal. When I wasn’t using a walker, or even when I was using a walker, I’d have people in the store say, “she doesn’t need that walker”. How do they know? They don’t know me. If that’s how strangers are going to react, how are people who knew me working two jobs and working search and rescue going to react? That was my line of thinking at that time.  
But even when I have family telling me it’s a made-up disease, or neighbors saying, “well, you’re just in it for the Social Security check. At least you got that”. Like that really compares to my prior income? I don’t think so.  
INTERVIEWER: When people would say negative things or not believe you, how would you respond?  
I didn’t. I just let it go and internalized it, and it made me feel worse.   

INTERVIEWER: Have you ever seen a therapist or a psychiatrist to help with this process?  
Uh-uh. I remember reading a book in 2003, and it was “What to expect the first year of your diagnosis with MS”-- something like that. And it said, do not seek therapy. And I thought that was weird. I'll need to go back and reread that book. And I thought it was weird, so I didn't. I thought maybe I was just too weak. I thought I was weak and didn't know how to process all of this. And now I wish I would have, because I wasted years being depressed, not wanting to do anything, just crying.  

INTERVIEWER: So how has having MS affected how you view yourself as a person?  
It's up and down. I used to be disappointed. And I still mourn for that loss of career. And I got over the driving thing. I had to stop driving when I was 29-- no, 39. And I was OK with it because I knew I was a danger to other people. But at 34 my doctor took my driver's license away, and I just threw such a fit. But five years later, I made the decision myself to stop because I knew I was a danger. I have to admit my limitations, and I have to stick to those because there's a price to pay. It's not my fault I have MS. So, I just have to roll with the punches. When it's a bad day, I have to just let it be a bad day. It's not my fault, I didn't do this. None of us ask for MS. There's nothing we did to get MS.  

It's made me not take things for granted, like walking and thinking and swallowing and seeing. I have regrets that I wasted a lot of time on stupid stuff. And I have regrets that I wallowed in depression for so many years, and I was wasting precious time that I could have been moving. I could have been walking. I could have been going places. I could have-- instead of just sitting at home and being sad. I wake up-- I'm grateful every day for the abilities that I have because I know people that are way worse off than I am, people that are bedridden, people who can no longer speak, people who are end stage MS, and a couple have been psychotic. So, I'm grateful that I have what I have. 

I worry about that day I can't take care of myself at all. And I know I'm going to go into a nursing home. I know it's unavoidable unless there's something that's going to remyelinate in the future that's going to allow me to regain the use of my arms fully because it's a little bit each time My fear is if I can get someone in the home to help me, but I don't qualify for that, and I can't afford to pay for that, so I would end up in a nursing home. 

INTERVIEWER: Can you talk about if you had to give advice to health care professionals that you’ve interacted with, what would you tell them?   

Treat the person, not the disease.   

INTERVIEWER: And what does that mean? 

It means just because something works for one of your patients doesn't mean-- it's not going to work for every patient. We're all individuals. And listen to your patients. When we say this drug is not working, and the MRI shows that it's not working, and the symptoms show that it's not working, and the 25 timed tests shows that it's not working, it's not working. It’s time to move on. Even if you say you’re on the strongest drug there is and it’s not working, well, maybe we’ll try something that’s not as strong, and maybe it will work. It’s better than staying on a drug that’s not working. Do something. 

When they say they're not feeling well, maybe just drop off some food so they don't have to cook. Or mow their lawn. If you happen to drive by their house and see their grass is, like, a foot high, maybe you should just mow it. That was an issue that I had.  Sometimes people with MS aren't going to ask for help because they have too much pride or they're too embarrassed. And sometimes you just have to give them what they need. You just have to open your eyes and look and see what they're struggling with. Maybe the dishes. My best friend would see the dishes piled everywhere, and she would do them because I couldn't stand up long enough. So, she would come in and do them. She would clean my house. And I say, no, no, no, no, but I was very grateful. Sometimes no means yes, believe it or not.