Faith's MS Interview
Name: Faith
Numbing in hands and feet. Walking slow. Optic neuritis that I didn't know was optic neuritis at the time. I was told they were just headaches.
3. What are your top symptoms you deal with every day? Do you use mobility aides?
Pain, cognitive disability, fatigue, shaking, tremors. Yes, I use aides. I use a cane, walker, and transport chair. I use to use a cane every day and a walker occasionally but now it's switched to a walker daily. I've had 4 falls just this year, all with major injuries. I also have 2 other autoimmune disorders - ITP & Hashimotos. I've had shingles 7 times. I've had cancer 3 times. I have black holes and brain atrophy. Just last month I was diagnosed with stage 2 kidney failure.
4. What is your relationship like with your healthcare team? Positive? Wish it could be better?
Very positive. I finally found a team of doctors that listen to me and take my concerns seriously. They suit my personality. We can laugh and make light of what's going on. Having the right team around is very important I think. It took a very long time to get to a good doc. I went through the gamut of incompetent docs, docs who didn't believe me, doc who said I was depressed, it's in my head and that it's a female issue. I've had docs walk right out the room as I was asking questions. But I'm in good hands now.
5. Are your family, friends, spouses, coworkers, and neighbors supportive? Did relationships change? Do people you know treat you differently now?
For the most part, yes. My daughter is my caregiver and my biggest cheerleader. My son keeps me laughing. My grandson makes me a proud grandma. I did however loose some friends after my diagnosis. Some people looked at me as a burden. Some people say they are really here for me but they don't show it. A coworker once said to me "if you just believed in Jesus you wouldn't have MS". But for the most part, it's positive. My kids keep me going.
7. What are some things you still love to do? What's your passion/hobby?
Crafts. I love painting. It takes my tremors away. Traveling. I love exploring new places. Even of it's just a day trip or a couple hours away. San Francisco is my home away from home. Anywhere by the water makes me a happy girl. Long walks. Yes I'm in pain from them but I still like to get out there and try.
Isolation, not being able to work, inability to do things by myself without assistance.
Labels ("cog fog", "MS Survivor", "being a patient"). "Cog fog" is the worst one to me. I don't have fog. If you want fog, go to San Francisco. They have fog. I've seen it with my own eyes. I have cognitive disability, not fog.
Age: 65
Diagnosis: Secondary Progressive MS (SPMS)
Diagnosis: Secondary Progressive MS (SPMS)
Location: Michigan
1. When were you diagnosed?
Officially in 1999 but I had symptoms 10 years before that.
Officially in 1999 but I had symptoms 10 years before that.
2. What were your early symptoms? What made you thing something was wrong?
Numbing in hands and feet. Walking slow. Optic neuritis that I didn't know was optic neuritis at the time. I was told they were just headaches.
3. What are your top symptoms you deal with every day? Do you use mobility aides?
Pain, cognitive disability, fatigue, shaking, tremors. Yes, I use aides. I use a cane, walker, and transport chair. I use to use a cane every day and a walker occasionally but now it's switched to a walker daily. I've had 4 falls just this year, all with major injuries. I also have 2 other autoimmune disorders - ITP & Hashimotos. I've had shingles 7 times. I've had cancer 3 times. I have black holes and brain atrophy. Just last month I was diagnosed with stage 2 kidney failure.
4. What is your relationship like with your healthcare team? Positive? Wish it could be better?
Very positive. I finally found a team of doctors that listen to me and take my concerns seriously. They suit my personality. We can laugh and make light of what's going on. Having the right team around is very important I think. It took a very long time to get to a good doc. I went through the gamut of incompetent docs, docs who didn't believe me, doc who said I was depressed, it's in my head and that it's a female issue. I've had docs walk right out the room as I was asking questions. But I'm in good hands now.
5. Are your family, friends, spouses, coworkers, and neighbors supportive? Did relationships change? Do people you know treat you differently now?
For the most part, yes. My daughter is my caregiver and my biggest cheerleader. My son keeps me laughing. My grandson makes me a proud grandma. I did however loose some friends after my diagnosis. Some people looked at me as a burden. Some people say they are really here for me but they don't show it. A coworker once said to me "if you just believed in Jesus you wouldn't have MS". But for the most part, it's positive. My kids keep me going.
6. What are some things you loved to do that you had to give up due to having MS?
Working. I loved my job, I was good at it. I've never not had a job. It was a big shock and transition. I felt kind of useless in the beginning. I know now that it was for the best. Gardening/yard work. I used to love to get out their and plant flowers. I can't get on the ground anymore. Taking long walks. Now I'm lucky if I can walk from my front door to the car without being in pain.
Working. I loved my job, I was good at it. I've never not had a job. It was a big shock and transition. I felt kind of useless in the beginning. I know now that it was for the best. Gardening/yard work. I used to love to get out their and plant flowers. I can't get on the ground anymore. Taking long walks. Now I'm lucky if I can walk from my front door to the car without being in pain.
7. What are some things you still love to do? What's your passion/hobby?
Crafts. I love painting. It takes my tremors away. Traveling. I love exploring new places. Even of it's just a day trip or a couple hours away. San Francisco is my home away from home. Anywhere by the water makes me a happy girl. Long walks. Yes I'm in pain from them but I still like to get out there and try.
8. What is the most negative outcome that has come about since having MS?
Isolation, not being able to work, inability to do things by myself without assistance.
9. What is the most positive outcome that has come about since having MS?
Bringing my family closer together. Joining the MS community, meeting some amazing people, and experiencing some really great opportunities I wouldn't have had without having MS.
Bringing my family closer together. Joining the MS community, meeting some amazing people, and experiencing some really great opportunities I wouldn't have had without having MS.
10. Do you have any pet peeves about MS (labels, ads, peoples views about MS, etc)?
Labels ("cog fog", "MS Survivor", "being a patient"). "Cog fog" is the worst one to me. I don't have fog. If you want fog, go to San Francisco. They have fog. I've seen it with my own eyes. I have cognitive disability, not fog.
11. What's your biggest fear with living with MS?
That I'll loose my memory and I won't remember who I am or my who my family is. That I'll end up bedridden. That I'll loose my ability to bath, feed, dress, etc myself. I can deal with the physical disability but the idea of not knowing who I am or who my children/grandson is would be too much to bear.
That I'll loose my memory and I won't remember who I am or my who my family is. That I'll end up bedridden. That I'll loose my ability to bath, feed, dress, etc myself. I can deal with the physical disability but the idea of not knowing who I am or who my children/grandson is would be too much to bear.
12. What's your biggest hope with living with MS?
That the next generation won't go through what my generation went through. That doctors will take individuals more seriously, especially early on. That there will be a cure.
That the next generation won't go through what my generation went through. That doctors will take individuals more seriously, especially early on. That there will be a cure.
13. Best piece of advice you can give an individual living with MS?
Be your own advocate. Never settle. If your'e not happy with your doctor, seek a second, third, fourth opinion. Be honest and open with your loved ones about your feelings and needs. Laugh, laugh, laugh!!! Laughter and positivity is better than any drug on the market. Every day may not be great but I can find something good in every day. Sure there will be days where you will want to scream, cry, yell, and give up. But make that choice to see the good.
Be your own advocate. Never settle. If your'e not happy with your doctor, seek a second, third, fourth opinion. Be honest and open with your loved ones about your feelings and needs. Laugh, laugh, laugh!!! Laughter and positivity is better than any drug on the market. Every day may not be great but I can find something good in every day. Sure there will be days where you will want to scream, cry, yell, and give up. But make that choice to see the good.
14. How do you feel about the MS community? Social media? Yay or nay? Are you familiar with MS organizations such as the MS Society, MSAA, Multiple Sclerosis Foundation, etc? Have you ever used their services?
I love the MS community. I've made some great friends. I've participated in some great events. I participate in the walks every year. I've gotten the chance to be apart of some great opportunities. For the most part, social media has been a positive outlet in my life. There are websites and accounts out there who prey on the weak and try to scam people. I have heard of all those MS organizations and I think they're a great help. I've gotten assistance with cooling towels/vests, shower bars/seat, a grant for a new stairs for my deck, a grant for a new fridge, caregiver award, assistance with medication costs. I am beyond grateful for all the help I've gotten and the help I hope to get in the future if need be.
I love the MS community. I've made some great friends. I've participated in some great events. I participate in the walks every year. I've gotten the chance to be apart of some great opportunities. For the most part, social media has been a positive outlet in my life. There are websites and accounts out there who prey on the weak and try to scam people. I have heard of all those MS organizations and I think they're a great help. I've gotten assistance with cooling towels/vests, shower bars/seat, a grant for a new stairs for my deck, a grant for a new fridge, caregiver award, assistance with medication costs. I am beyond grateful for all the help I've gotten and the help I hope to get in the future if need be.
15. One thing you wish people knew about what it's like living with MS?
That I'm no different than anyone else. I just have physical and cognitive limitations that they don't. I'm still a human being. I still deserve to be treated with respect. I"m not making any of this up. I"m not lazy. I did not ask for this.
*I want to thank Faith (mom) for the interview.
**If you would like to follow her, check her out on Instagram: @faithagauas
That I'm no different than anyone else. I just have physical and cognitive limitations that they don't. I'm still a human being. I still deserve to be treated with respect. I"m not making any of this up. I"m not lazy. I did not ask for this.
*I want to thank Faith (mom) for the interview.
**If you would like to follow her, check her out on Instagram: @faithagauas
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