41 thoughts on “Student Advocacy

  1. It’s surely hard to live or imagine a life you are living in. How do you try to stay positive and still maintain a positive attitude towards life knowing the dangers of tomorrow might be? How do you cope with the world around you even when people judge you?

    • Hi, thank you for respondig to my video, and its struggle everyday but i am thankful that i have a therapist that helps me get through all this, it is very depressing at times but i try my best not to let it come over me. I will always have down days but i try to surround myself around positive people

  2. My question for Donna is, What is your diet? and do you have any specific diet you have to follow to minimize the pain. How will you feel when medicine like Dr.Krane describe get put out in the market that helps with the pain disease? Also have you tried any other ways to minimize the pain and stress beside medicine? Thanks and stay strong and live strong!

    • Hi,
      I don’t have any specific diet. But i try my best to stay away from junk food it adds on to my fatigue. As for the medication, i havent gotten anyone that has stopped my pain entirely but i do hope there is one in the future that targets my fibromyalgia pain. I am currently on gabapentin which is a nerve medication. My doctors have uped my dosage which helps a bit but it doesnt help at all when my fibromyalgia flares up . As for other ways to minimize my pain, i have tried acupuncture before and i currently use icy hot patches mainly for my back pain but im also going to try going to a spa this spring break to see if the heat helps. It was recommended by my therapist.

  3. Hey Donna,

    It must be very difficult living with chronic pain and dealing with it every single day. You are very brave and strong the fact that you are not letting this get to you.
    My one question to you is, what types of exercises do you do on a a weekly bases to keep your pain in control along with the medications you take?

    Thank You! You are a fighter πŸ™‚

    • Hi Anika,
      Thank you so much i really Appreciate it. As for exercises i am doing stretches at home but as for cardio exercises, i can’t do any of that because it just makes me feel worst. I have been meaning to tey yoga but i havent since i’m almost done with school my schedule is hectic. I am hoping i can try it next semester when i have less classes

  4. I have the utmost respect for you Donna, for someone who has to live with this unbearable pain day in and day out and still keep fighting through it. That to me is a sign of strength, determination, and will power. My question for you Donna is how does fibromyalgia stop you from doing certain tasks or activities? When do your symptoms bother you the most? Is there anything that makes it feel better? Thank you!

    • Hi Saranjit,
      Thank you i really appreciate that. As for your questions, it limits me alot and not only because of the fibromyalgia my spine injury as well. I am not able to stand for too long because of the pain that i feel in my legs. I often shop online for clothing etc, because its difficult to go out and shop carrying heavy bags. As for school i often get up and walk a bit when i notice my pain is too much and my professors are aware of my current illness so it’s fine with them. My symptoms bother me the most when i am stressed out, lack of sleep and also when i wake up every morning the morning stiffness is unbearable because my legs hurt the most sometime making it difficult to walk and also the fatigue is intense and i sometimes have to try to overcome to get out of bed. I sometimes force myself to walk just so i can feel a bit better in the morning.

      Hope this answers tour questions!

  5. Hey Donna, just wanted to say thanks for sharing your story and that you are really strong and doing good despite you sickness and all that it comes with, you have not allowed it to stop you so keep fighting.

    My question is, have you gotten any new or worsening symptoms since making this video, or have they improved?

    • Hi Venice,
      Thank you so much! And as for worsened symptoms or new ones. I am beginning to experience weakness in my arms which shows up every now and then not everyday. It sometimes makes it difficult to open my medication bottle. The symptom usually last a couple mins to an hour. My burning skin sensation has grown intensly so i experience more than usual now and usualy worst at nights and have a hard time sleeping at times. I usually take medication tochelp me fall asleep because my left leg pain has gotten worst due to my pinched nerve in my spine. My fatigue has gotten worst. As far as improved i don’t think it has

      Hope this answers your question

      • yes, this does answer my question, be strong in all that you do, I might not know you and I don’t want to treat this as just me asking you a question to get a grade for my class. What you have shared puts into perspective what your condition is and the challenges that you face on a daily basis. It enlightens me in the many things that I take for granted that I should instead be giving thanks for continually. Be strong in all that you do and keep fighting. I will remember to pray for you.

    • Hi mustapha,
      I have tried physical therapy a couple times, it only helps a little but i still try to do stretches at home. I am considering doing yoga next semester when my semester will be less hectic. As far as running or cardio its a no no for me. It just makes me feel worst and my doctors recommend anything that deals with stretching like swimming or yoga

  6. Good Evening Donna,
    I would to ask you a quick question written as below:
    How do you deal with the feelings of isolation when your friends were leaving you? Is there any placebo effect trials in terms of chronic pain? Is there any possibility you to take epidural injection in the future? Why does fibromyalgia has more impact on women rather man?

    • Hi,
      I usually talk about my feelings in therapy with my therapist i see every week. She’s been a big help when it comes to my depression. Also, i haven’t heard of any placebo effects trials in terms of chronic pain. As for the epidural injection i actually did it this year in february it did help for about two weeks then the pain came back. I am more than likely giving it another try if it doesnt help i might resort to surgery depending on how bad it gets later in the future. I believe it’s because men are less likely to go see a doctor so there isnt’t enough statistics showing how it impacts men as much as it does women

  7. Hey, Donna I just want to say your such inspiration coming out with your condition. You have taught me a lot about fibromyalia. It has to be a constant battle fighting the chronic pain, but you talking about your chronic pain and bringing more awareness towards your chronic pain is inspiring.
    Question:
    How do you face the symptoms when the weather gets really cold in the winter? Is it harder for you physically to go out? Why does fibromyalia starts to act the worst in winter even if it is affect by temperature?

    • Hi
      Thank you so much i appreciate that.
      It’s mainly because my pain is nerve pain so the colder it gets the worst it feels. I try my best to put extra clothes on and find anyway to kep myself warm. It is harder for me to go out because of how much pain im in. Sometimes it is crippling that i can’t do much for myself. Everyone reacts to the cold, your brain sends signals to your nerves in your muscles telling your body to shiver to keep you warm. In my case my brain heightens what my body feels more specifically the pain levels.

  8. Hi Donna, thank you for sharing an interesting story. I did not know about such disease until now. You are a strong woman to be able to manage all at once. My question to you: is your body susceptible to get sick? Since your body feels all these different symptoms and gets fatigue over time, does that weakens your immune system?

    • Hi Elisia,
      Thank you! and usually when I am sick like if I get the flu, it’s usually twice as worst as a normal person. According to my doctor ” that’s just what fibromyalgia does”, but my cuts take a while to heal they are always more painful than anyone else. It can sometimes get swollen. For instance if I have a cut or bruise on my hand it usually hurts my whole arm. Compared to someone else who got bruised in that area they would only feel it in the area they are bruised. But yes generally when I am sick it is usually amplified.
      Hope this answers your question

  9. Dear Donna,
    With your memory being short have you tried posting little post its and notes around your house to remember things more? For example: You can put post its around your bathroom mirror to remind you to take your medicine and when you are finish you put the post it aside and if you forget when you go back to the bathroom and see your post it on the side you will know you took your medicine.

    • Hi Nyasia,
      Thank you for that advice I think that would be helpful I never thought of that. I usually put reminders on my phone to alert me at certain times. Even when I do get reminded I forget. But maybe the post it can definitely help!.

      Thanks for the tip!

  10. Hey Donna,

    I was unaware of the severity of this disease until I read the article on Boundless and watched the class discussion. I admire your strength and determination to continue to try living regularly even with a serious disease affecting you.

    My questions are: at what point in your life did the symptoms truly begin to negatively impact your life? At what point did you realize something serious might be wrong with me?

    Also, you mentioned how Fibromyalgia worsens with age. Do you know in what ways does the disease worsens? Have you and your doctors discussed future treatment for when it worsens?

    Lastly, have you been asked to participate in research that aims to understand Fibromyalgia and find new ways to treat those affected by it? If not, would you ever be open to that?

    • Hi Adonis,
      Thank you! I admire your enthusiasm in knowing more about Fibromyalgia.
      I grew up knowing that I was always sick because my parents did not know what was going on with me they just assumed I had a weak immune system because of how sick I would get.
      But my worst experience was when I was 11 years old. I participated in sports doing track and field for the first time. By the end of it I went home so sick that my body hurting from my neck down I couldn’t move my arms or body basically because of how sensitive I was to touch. In the country I grew up (st.Lucia) my
      grandmother, who raised me, resorted to herbal medication whenever I got sick which helped most of the time.

      Anyone who has fibromyalgia is different. some people may get better over the years, in my case I have severe fibromyalgia and I have noticed over the years my symptoms have increases or new ones appear. I tend to pay attention to what happens to me because I see my rheumatologist every 2 to 3 months and I always tell him about my new symptoms. My doctor has advised me to do physical therapy or swimming and my other doctors suggest yoga, especially for my spine because I have degenerative disc disease also. But I have been working with my therapist for a more holistic approach to my condition.
      I have not found any research being done currently for fibromyalgia but if there are I would definitely take part in it.

      Hope this answers your questions!

  11. Hi Donna,
    Your story is very inspiring, I have the upmost amount of respect for you. I think you are an extremely strong woman, and you are a perfect role model for those who also have this disease.

    My question for you is: Can women with fibromyalgia have children? Would their amount of pain be increased through their pregnancy? While pregnant would they still be able to take their medication without harming the baby? Is this a concern for you?

    • Yes women with fibromyalgia can have children. It doesn’t affect your reproductive system. I have looked at youtube videos of women who have been pregnant with fibromyalgia. Some have said they had to stop working during their pregnancy because their pain was too much others had normal pregnancies and some who have had 2 or more kids always say that one birth was worst than the other. AS far as taking medication while pregnant most of what I take now I cannot take it if I were to be pregnant. except for my depression medication there are no known side effects to women who are pregnant. I have thought about it and I also decided not to be on medication if I do end up getting pregnant in the future and if it does result in me being sick all the time during pregnancy then I will take a leave of absence from my job or whatever I have to.

      Hope this is informative in answering your questions Marissa!

  12. Dear Donna :
    I truthly admire you ! You are a great example for us or anyone that might be facing your situation. My questions for you are what are your daily activities? Does your family get involved? What do you do to manage your stress? Do you attend any support group? Stay strong πŸ™‚

    • Hi Liz!
      My daily activities currently is coming to school and also going to my internship site, which is required for my major. My family does not get involved. I am basically on my own helping myself. My doctors and my boyfriend and a few friends are my support group right now. I try to sleep It off or watch my favorite shows to keep my mind occupied. I do not attend any support groups, I have tried to find one, but I have communicated with people through online support groups who have the same condition.

      Hope this answers your question
      Thank you Liz!

  13. Hey Donna
    I must say that you are a very strong woman. Never give up and stay strong. πŸ™‚
    My question for you is What are some of the ways, except medication, that you use to cope with your disease? I would also like to know, what do you think should the US government do to spread awareness of Fibromyalgia and what kind of job and financial opportunities should be provided for people with Fibromyalgia.

    Thank you for sharing your story πŸ™‚

    • Hi Sehar,
      I have been trying physical therapy, I am also going to start going to a spa because I heard the steam and heat helps. I have tried acupuncture and I might be doing yoga as soon as I have enough time to do it. I am quite busy this semester.
      I think just as other diseases, Fibromyalgia is just as important. I am hoping that they will allow SSI to be acceptable for fibromyalgia without having to have another illness associated with it. In some cases some people are unable to leave their house or function physically to take care of themselves. A lot of people are denied those benefits because the government doesn’t take it as serious as other illnesses. Mainly because there are no blood test or any other medical testing to prove that someone has fibromyalgia. As far as jobs. I think people with fibromyalgia can do any job they are able to do as long as it accommodates to their well-being at work. Because some may not be able to handle a full time position. In my case I wasn’t able to be a full time student and work part time so I had to quit my job because of how sick I would be.

      I haven’t really thought to much on how the awareness can be spread through the U.S government. But it definitely can be spread through social media so people are more aware of it.

      Hope this answers your question!

  14. Hey Donna,
    You’re a very strong and inspirational woman. This may or may not be a weird question, but I know when my arms or my legs fall asleep I do feel pain and a tingly sensation, do you notice when your arms fall asleep and does it hurt more than any other painful sensation you have had before? Have you ever thought about going to those countries where there are people doing research about this illness? Would you ever consider forming part of that research that may lead to experiments?

    • Hi Alondra,
      And your question is not weird at all and I’d be happy to answer that! and yes when my arm does fall asleep it hurts a lot and the tingling sensation feels like sharp needles to me lol. I have never thought about going to other countries for research but I will definitely keep that in mind thanks for pointing that out and I would definitely consider forming part of that research if I do get the opportunity

      Hope this answers your questions!

  15. Hi Dona!
    It’s been a wonderful experience watching your story. I was totally unaware to this disease until I read it on boundless and then listening to your story. I really appreciate your commitment to fibromyalgia I can feel how hard is it for you to tackle such chronic pain. I would like to say, when I get a headache I feel like dying and if I was told there is no cure for headache then I will actually die. Now that I listened to your story I really feel sorry for you and I hope there is someone who can come up with a cure and prevent you from living miserably.
    Question:
    Why this disease has a most chronic impact on your body in winter than any other condition? Are there any particular nutrition that are prohibited for you? Are you adapted to it? If not then what are your regular activities that keep your mind away from such symptoms? Do you usually skip your work or college due to waking up every morning? Do you have problem sleeping at nights?

    • Hi,
      Thank you so much i really appreciate that.
      To answer your questions, mainly because the brain controls what signals it sends to the nerve in the muscle to contract when we are cold to help us feel warm. In my case or anyone with fibromyalgia our nervous system isnt wired to send signals the right way to our body, because it also controls our pain level. If my muscles become tense my pain increases. This is what happens to me during winter time compared to when the weather is warm my muscles are more relaxed.

      I dont have a specific diet but it was recommended by my doctor to stay away from junk foods. As far as activites to keep my mind off the pain. I do this daily i try to do alot which keeps my mind occupied or hang out with friends and helping them with assignments keeps my mind off my problems for a little while.

      I actually had to leave my job because i couldnt handle being a full time student and working part time. It was too much and i would be stuck in bed often which caused me to skip out on school and work alot. So i chose what was more important to me, to finish school.

      Yes i do have problems sleeping at night. I have medications that aide in helping me sleep. Because usually if my body isnt aching my back and leg pain prevents me from sleeping due to my herniated discs in lumbar area of my spine

      Hope this answered your questions!

  16. Hello Donna,
    Thank you for sharing you journey thus far. My question for you is does Fibromyalgia affect what career you could have? My mother was also diagnosed and she had to dropped out of work completely. At the time I did not understand it but now I can see what this disease does and how it can affects daily life. So for you does this mean you feel limited in the jobs you can do because of the pain or do you think that you’ll be able to do whatever you want as long as you’re accommodated?

    • Hi Xavier,
      I am glad you were able to understand it a bit more and help you to understand your mother’s situation better. I have thought about my career and how it will affect me, because I had to quit my last job because of how sick I was getting. I couldn’t handle being a full time student and working part time. So I had to quit my job. I have considered working part time and if I do feel that my future job can accommodate me I might consider full time. But for now I am trying to get into a career where I wont have to do much standing or walking and could possibly take my work home.

      Hope this answers your question Xavier

  17. Hi Donna,
    Thank you for sharing your story, it is very inspiring. I did not have much knowledge of fibromyalgia or what it’s like to have it before it was talked about in class and watching the video. You mentioned that when you first spoke to your friends about the disease they didn’t really understand it too well. You also mentioned that in the future that you would like to start an organization for people with fibromyalgia. How would you go about spreading awareness of fibromyalgia and helping people understand what it is, and what can we do as students to help raise awareness as well?

    • HI Idavil,
      Thank you so much for the support. Although I haven’t had time to sit down and plan that out as yet due to my last year of school being hectic. But I have thought about doing more research into seeing how I can make this organization possible. I think I would target people through social media and probably make videos or blogs or create a hashtag. It would be helpful if students could bring it up in their classes or in clubs that deal with health. I have had a few friends in my major who have used my story as a way to spread awareness. like in speech classes, and also class presentations or papers.

      Hope this answers your questions! thank u !

  18. hello donna, has it ever been too hard to deal with fibromayalgia? in other words, since you mentioned you dealt with depression, have you ever thought that you couldnt handle it and support from your family and friends weren’t enough and how did you overcome it? (i apologize for being so personal)

    • Hi Timothy,
      It’s ok I don’t mind answering your question. Yes there have been a lot of instances where my depression was at its lowest that I would end up in the hospital but now that I see a therapist, I am able to deal with the emotions that come along with being sick physically. I do have new friends who are understanding to my situation and have been very supportive. Although, I don’t have family supporting me, I have my boyfriend who has always been there for me when I am at my low. But I am still on antidepressant medication for my depression which helps and I’m hoping in the future I won’t need them anymore.
      Hope this answers your questions Timothy!

  19. Hi Donna! I wanna first say I apologize if I’m asking personal questions, which ofcourse you do not have to answer at all if you don’t want too but my first question was; you spoke about this burning feeling you’d get, If you didn’t take medication and you were out in public. (let’s say in a subway cart just for example) Have you ever experienced this pain? How did you deal with it?? Did you try your best to suck it up so no one would think anything or would it ever come to a point where you couldn’t hold it in and you started to panic. Like how would the people around you react? Has this ever happened and what has the people around you do to help? How would they react? Also you said you didn’t have that much family help and your boyfriend had to help you most of the time. I find that amazing! But how did that make you feel :/ seeing that you were getting help from him but no one else (besides your grandma, grandmas are the best!) again I’m sorry if I was getting too personal.

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