Nora

The neurologist had just moved to his new facility, and he always has, in his office, different bulletins of studies. And so, I would always ask him, “What is that about?” And so, I said to him, “Do you think it'd be beneficial for me to go on a clinical trial with other medicine?” And he said, “No because so far, it's working. I wouldn't recommend that. If it wasn't working, then yes, I would recommend a clinical trial with different medication.”

I'm, personally, me, I am more scared of the side effects than the actual medicine, the benefits of the medicine. So, I, most likely, would not go to a trial for a new medicine, because I don't know how it would impact me. So yeah. So, for me, I guess that's where I'm scared. I'm a scaredy cat. I want to do new things, natural stuff, but I wouldn't want a medicine that I don't know the side effects on. So that's for me.

And so yes. So, I went there. After the first questionnaire, she gave me the first method, which was the 12 pre-filled syringes. And they also gave me the applicator. So, they gave me everything. So, I didn't have to worry about using my own. And she told me, “Use our medicine, use our applicator. Don't use yours, because this is our study. So, we don't want you to use yours, because we want to make sure that we're doing it from our supplies.” So, I did. At the end of the first month, and I went back, and then we had a questionnaire. And answered on the skin irritation, or did the applicator work, did it fail at any point in time, did you miss anything? And so, no. So, I answered it correctly.  And because I was doing the pen when I did the pre-filled syringes, I noticed that the button was much softer to press. The part that I don't like with this applicator is, I have to push the applicator back to release the lock. So, when I'm injecting everywhere, then I can use the two hands. But when I'm injecting here, I couldn't use the two fingers. And so, I'd have a hard time. And so that's when the nurse told me, “Just don't inject in your arms. If you don't need to, you have--.” So, I said, “OK.” So then after that one month, then she gave me the Rebidose pen, which is huge. And I said, OK. So, let me do that. And so, I did that for a month. And what I was noti Participating cing is, the button was harder to press. And I was pushing it much deeper into the skin.  And so, I said, even as much as I hate touching the syringes, it's seeming that one is much softer, and it wasn't causing the skin-- because sometimes, when I would put the pen, it was too hard. And it would cause, like, a round mark or a purple, if I moved the needle. So, at the end of the second month, I did the same thing.  Oh, and I returned all the supplies to them, that's right. They wanted the syringes. So, I kept everything, and they collected everything. So, at the end of the second month, I completed the questionnaire. And they obviously said the same questions for the auto-injector as the Rebidose. And then one of the questions was, which one did you prefer? And then that's when I responded that I preferred the pre-filled syringes.  And she says, “OK, you're done. You're done with the clinical trial. Thank you for participating.”

It was such a great benefit for me because it answered my question, which one is better for me? And so then, I finished. For me, personally, I finished my dosage with the pen, and then the following month, I changed the method to the pre-filled syringes. And so, then I said to her, “If you have any other clinical trials where it doesn't involve medicine, I will gladly participate.” So that one was beneficial for me all around, because I got two months of medicine. Plus, I was able to make a real, informed decision of which applicator was better for me.

And then there is another one with the [INSTITUTON], and it has to do with genetics and the chemicals in the medicine that we're taking. And so that one is kind of interesting because he says that there are certain markers in us with MS, that we should refrain from certain anti-inflammatory medicines. So, , I'm really interested about that. So, when I get back home, because he sent me a kit to—I think it's based on saliva. So, once I get home, I will do that saliva, send it to him, and then he's going to do a test on that. Because my other concern is genetics. I want to know what's—my daughter. I want to know—I have MS, and I want to know, what's the propensity of her getting it? Is there certain genetics? Are there certain markers? So that, hopefully, that we can identify, so that she won’t be getting it.

And so, throughout the day to remove the stress from work, I would take a walk. And then, I would come back. But within two or three hours, because of the yelling and screaming, I couldn't focus. So, I was noticing, also at home, that just the interference of the TV or the radio, it just-- at times, I would be up at night, just tossing and turning. I wouldn’t be able to go to sleep. And it was impacting my cognition. I just couldn't think right. And there were days when I would wake up, and I would be at work. But it's like, wow, I don't know how I got here. I mean, obviously, I know, but just the thinking was really hard. And I was just noticing that my muscles, they were just getting tight. 
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I know that, in terms of sleep, I need to have at least seven hours' sleep. Because if I don't, I will wake up the next morning, and I will be either fatigued, or I will sometimes have headaches that last the entire day. Where it's a very small headache, like here. But it's just the entire day, and it's very aggravating. 
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And so, I would feel my toes tingling, in the sense of the coldness, that they were so cold that they would be stiff. And so sometimes my fingertips, as well. So, I remember at work, one of the reasons why I would go out to walk, is to warm up. And it's not that the A/C was so cold in the office, it was because we were sitting. The only time that I wouldn't feel that, when I was doing conducting training in the morning or in the afternoon. But if I were sitting or doing virtual webinars or something, that's what I would feel in my hands and my toes. And then, also, if I don't get the sleep, I would just be tired with my thinking. I couldn't remember things. It was just fatigue and just tired, just being-- waking up, and I'm still tired and sleepy. And then the bladder. 

So, my thinking is, yes, it will help me in not having the frequency of going to the bathroom, but then with a dry mouth, I’m going to have bad breath. And then constipation, I am going to have to do something for the constipation. So, the way I looked at it, is if I want a medicine that will help me with my symptoms, but not cause other side effects that I need to be taking other medicines. So that's, kind of, why I stayed away from the bladder.  

So, I went to a physical therapist who specializes in pelvic floor exercises. And she was awesome. She was really good, and she gave me a lot of exercises to do.  
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And so now three times during the day, I would set my alarm to do the Kegel exercises. And then I would see her. I think I saw her three times a week. And I think after 12 weeks, I was more in control.  Well, at least, let me put it this way. When I had the urgency, she tells me to do the Kegel, and then walk to the bathroom. And it helped. Because I was so scared that I'd have to wear diapers for the rest of my life. So, she told me to do those exercises.  And she also told me, “Obviously, watch your intake. If you're doing caffeine, if you're doing fruit juices, certain things will just aggravate your bladder.” And sure enough. So, I still like coffee, so I knew that if I drank coffee, the next half hour to 45 minutes, I need to be close to bathroom. Because the urgency would come, and so that was awesome.   

I would take the pre-filled syringe and put it into an auto injector. So, I would have to secure-- there was that lock. So, I would unsecure the lock, and then I would put the pre-filled syringe in the auto injector and then twist it. And the button that you press is hard, because obviously it has to go.  And so, I did that one, probably for about five or six years. And when I went to an event, they now had a pen. So, the pre-filled syringe is inside the pen, and all you had to do is just press that one button. And I said, OK. Because every time I look at the syringe, I see the needle. And it's like, oh. And so, I said, OK, let me try that. Because that way, I don't have to touch the syringe. I don't have to put it in the injector.  So that's called a Rebidose© pen. So, I started doing it. But then, I was noticing that I would press-- when I put the pen, it was a lot of more pressure in the skin. And there was a louder pop, definitely a louder pop. After I do the injection, I have to rub the area, too. Because as soon as I inject, you can feel the liquid, just right there.  So, I have to massage it, so that I'm, kind of, spreading the medicine around, for about five minutes. And then I always put some lotion, because I don't want the skin to get scarred or any changes. With a Rebidose© pen, I was noticing that it was much deeper. And yeah, I noticed a couple of times where there was a black and blue mark, but I did it with the other one. So, I did the Rebidose© pen. 

And I saw my second neurologist. When I saw him give a presentation, he was very knowledgeable, very forthright. I'm going, wow. And my nurse and these other ladies recommended him. So, I left the first neurologist, because one, she didn't show me anything about that MRI, which is the diagnostic tool. And she just wasn't encouraging. And she didn't have a lot of information on MS. Because when I would ask her some questions, she would just say, “Oh, go to the website, or do this, do that.” So, I really wasn't happy with her.  

So, then I said, OK, with this new neurologist, he's very, very comforting, but also very knowledgeable. And he did a lot of research. He did, also, talks. And he would stay. He was very current with all the new medicines. So, I figured, OK, I've now found a specialist that I really feel comfortable with. And when I would go into his office, he had all MS information. And so, I figured, OK, I'm in the right place now.  

When I went into her office, it was a small, little office. No MS information, nothing. And she was a little, my word, ditsy. So, I just didn't have a good connection with her, in terms of doctor-patient. And I said, "No, I need to learn." 
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I saw my nurse in another event. And again, I was complaining about neurologists. And then she said, “Go to Dr. So-and-so.” And oh my god, that was another godsend. Because I brought my previous CDs. And I spent almost two hours with him. He looked at my previous CDs. And then, I love his office. Because there's a first floor with the MRI machine, so we would do the MRI at, I'd say, 10 o'clock. And then at 11 o'clock, we'd go to the second floor, and he was there. And so immediately, we would be able to do it all in one day, which was awesome.  
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It was almost a year later of me being diagnosed, so I had a whole bunch of questions. And he was awesome. And he says, “Any questions, call me.” And through there, I met some other MS friends, patients and we were all kind of like his clique. We followed him and go to all his talks and stuff, so I felt better. 

And so, the summer came. And like I said, we normally travel. And I was, kind of, like, a little concerned. But I said OK. So normally when we travel for the summer, I would go away for a month. So, I was able to get a two-month supply, because I needed to get the month that I was leaving and then the month that I'm coming back. So, I got the two month's supply. And I felt so weird, traveling with almost 12 syringes. But I had the prescription. I had the information of the doctor. And then the company that provides us with the medicine had a little pouch, a travel pouch with ice. And I said, OK. So, I figured, OK, so let's see. Hopefully, they won't stop me. But no, I had it in the carry on. They just asked what it was. I told them. And I said, OK, this is great. And this is before TSA was there. So, I figured, OK, this is good. And then here, I was able to do my normal injections. I figured, OK, great. So, I can travel, going through the airplane, and the airport. And then when we would come here, we wouldn't stay in the town. We would literally get on buses or taxis or whatever. Or we would rent a bus, and we would travel from place to place.  

At work, we had cubicles. So, there's no door. And unfortunately, my coworker has a really loud voice. And they would talk from one end of the office to the other. And I kept telling them, because I told them I have MS, it interferes with me being able to concentrate on work. If there's loud noises, I just can't focus. And so, I kept telling her that, and she wasn't very sensitive. She just said, “Well, that's who I am, and I talk loud.” So, I was noticing the stress was-- I was starting to get more fatigue.  I was starting to, like, just not have patience. And I couldn't hear. I mean, I could hear everything, and it just interfered, where I couldn't think. And there were moments at work where I had what we call cog fog, where it didn't hurt to think, but it took so much energy, that I just didn't want to bother thinking. It was horrible to say that, but-- and so, throughout the day to remove the stress for work, I would take a walk. And then, I would come back. But within two or three hours, because of the yelling and screaming, I couldn't focus 

And in terms of social, it's kind of funny that now I just gravitate to individuals who have MS, who can understand if I feel fatigued or if I can't remember things.  I have some friends at work, who I did tell. And they, sort of, understand, but there's times when I would say, “I'm sorry, I can't go out, or I can't do this.” And they would say, “But you never want to go out!” And so now, in terms of socializing, I prefer only socializing with other individuals who have multiple sclerosis, who can understand when I say, "I'm sorry, I can't go."  
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I remember one of my MS friends invited me for luncheon for one of those clubs, the Rotary Club. And I woke up, and I just wasn't feeling well. I was just, oh my god, I want to go to this. But I can't. I mean, I just-- I was so tired. And so, I sent her a text, and I said, “I'm sorry. I'm not feeling well.” And she goes, “OK, no, I understand.” And so immediately, I said, see, she understood. But if I would have told someone else, they would say, why don't you just tell me the truth? You don't want to go, or you don't want to do a fundraiser, you want to do--  So, for me now, I'm gravitating more-- obviously, family and then long-term friends. But otherwise, new people-- I'm, kind of, just limiting to them who also have MS, who can understand if something comes up, that I'm doing it because of my illness, that I can't be there. It's not because that's another excuse. 

First of all, just to be there for the person and to listen. I know that we all have a tendency, well, let me do things for you, let's-- so to listen to the person, and for the MS person to truly be honest and tell the family and the friends if they do need help or what they need help with. And to understand that, sometimes, we can't even explain what it is, the symptoms that we're feeling.  We just know that, I can't think, or I'm tired, I'm fatigued. And it's not associated with anything more than, that's just what I'm feeling at the moment. And so, to be sensitive and to listen, to be sensitive. And if the person asks for your help, then to please offer it. But otherwise, just be there.