Living with Multiple Sclerosis and Learning to Dominate It

A few days ago, I sat down with Renesha Ragin to have a very candid conversation about what it’s like to live with Multiple Sclerosis (MS).  She’s had her share of challenges since her diagnosis two years ago, but she is learning to do more than just survive.  She’s learning to thrive and is reaching out to help others.  I hope you’ll find her story inspiring enough to move you to action!

Q1. I appreciate you taking time to meet with me.  I have to admit I didn’t expect to see you today when you called to say you weren’t feeling well and needed a treatment.  I’m not sure I’d be able to give myself an injection without great difficulty.  What have the past few days been like for you?

Renesha:  Well it hasn’t always been easy giving myself injections because I’ve always had a fear of needles, but when you yearn to feel better, you learn to overcome those fears.  I’m feeling much better.  I had my last treatment yesterday.  I’ve been busy and overwhelmed, excited and stressed all in one week, but I thank God that my week has finally ended with a smile.

Q2.  I remember you telling me once that you’re only 30 years old, but you feel like you have the body of someone much older.  What makes you feel this way and how do you deal with it?    

Renesha:  Before I was diagnosed with MS, I had the energy of an Energizer Bunny, as if I was on a B12 shot [She laughs].  I could work more than one job and attend any get together that I rsvped for, clean after myself, take baths, enjoy a hot tub on a vacation, sun tan, etc.  But now, post-diagnosis, I can barely clean my house but twice a month. I’m lucky to hold a full-time job.  I’m not sure if I can bear or could care for a child or myself at times.  Sometimes I go through temporary periods of being paralyzed or I have to use a cane for support.  I can’t exercise like I used to.  I have to keep my body from overheating.  I’ve learned it’s your thought process, and I never say I can’t.  I learn everyday to test myself and my inner strength and to be a living testimony to those battling any disease.  We have no limits, and I keep my faith in God.  He is so awesome!

Q3.  You mentioned that sometimes things are so bad that you have to deal with paralysis.  How do you cope with this emotionally and mentally?  It seems like it could be terrifying.

Renesha:  It was.  It was scary when it first happened to me.  I was like oh my God, what’s going on?  This is a new symptom.  Then you hear the stories of other people going in the hospital with a relapse and coming out in a wheel chair or a walker, not knowing if they’ll walk again.  You don’t know if it’s a temporary symptom or a permanent symptom.  I was able to move my legs again, so I knew it was temporary.  It was just the thought process of not letting the disease overcome me.  You know if you think negative, you’ll get a negative energy.  You may make yourself stay in the position you’re in.  I was determined to get back to work.  Working in the airport vicinity, I knew I needed the use of my legs.  So that pushed me.

Q4.  How long have you lived with MS?  Before you were diagnosed, what was your experience?  I’m trying to get a sense of things because it seems that people can go a long time with symptoms and not be diagnosed properly.  How did you even know something was wrong?

Renesha: I’ve lived with MS for two years as of January 8, 2011.  The symptom I was experiencing before my diagnosis was hearing loss.  I went to my ENT  doctor and I was like, well I’m flying between two states all of the time and I don’t know if that’s a factor with me going through this hearing loss issue. He told me to take Sudafed.  It just got waived off. I started going through balance issues where I had two bad falls. I scraped my knees and hands and didn’t know how I lost my balance just by breaking my fall from a little run.  Then I started to experience short-term memory loss at work where I was like, how did I forget that?  My boss was trying to remind of things I should’ve remembered.  I caught myself writing on post-it notes all around my desk just to remind myself of certain things that should have been easy for me to remember.  The biggest thing I went though was when I was at a funeral and started having double vision.  I just thought I needed driving glasses, but I noticed that my vision was getting worse.  I told my primary care physician and she said, “You’ve been feeling this way for three straight days, you have to go to the ER.”  When I went the ER, they started going further into researching why I was going through this with my eyes.  They said it looks like you have optic neuritis, but that’s usually a symptom of MS.  These were  some scary times. First, they were like you may have a brain tumor. You know, there were a lot of suggestions.  It was scaring me because who wants to hear tumor? I was like my God, am I losing my sight?  When I went to a hospital in New York, they left discharge paperwork telling me to follow-up with a neurologist in Georgia.  When I did that, it took me exercising at work and losing my balance at work and feeling dizzy for two days straight before I went to Piedmont Hospital.  They proceeded with an MRI and found 15 lesions on my brain.  That’s when I got my diagnosis for MS.

Q5.  That sounds like a lot for a person to go through. To be feeling bad and have things happening that are very unusual can make you feel like you don’t know what in the world is going on.  How long did you go from the initial symptoms to and accurate diagnosis?

Renesha:  It was probably for a good year and a half. I was going through it and didn’t even know.  The crazy part is when you ask the doctors how long I could’ve had MS, they can’t tell you.  They can only start telling you based on when your symptoms started.  There are some people who have MS and don’t have any symptoms.

Q6.  How did you feel when you finally got this diagnosis?

Renesha:  I felt relieved to finally get a diagnosis, but I was in shock. Hearing those words when I didn’t even know what it was…It was like, what is multiple sclerosis?  Is it like cancer?  Is it something I can survive from?  Am I on my deathbed?  You know, it just sounds scary. The words alone sound scary, and I was all alone when I got my diagnosis.  So to take in all that with no support system and time…hearing the diagnosis was scary.

Q7.  What is a typical day or week or month like for you?  How often do you experience symptoms?  Do you have long periods without symptoms?  I’m trying to get a sense of what it’s like to live with active symptoms?

Renesha:  A typical day for me is smiling through pain or stressed at work, but trying to get through.  In a week, I usually go through many emotional, hormonal issues as if I’m PMSing. I’m bored at times, tired at times, busy.  I love to cook.  That’s like a stress reliever for me.  I try to catch-up on TV shows.  I’m a TV fanatic. I try to read.  That [reading] was a problem for me at the beginning of my diagnosis because I couldn’t comprehend what I was reading.  I would have to read things over and over to grasp what I was reading.  This kind of steered me away.  I didn’t want to pick up a book.  I’ve just started pushing myself to read again. I’ve been reading everyday to get back into it.  [What is your favorite book right now?]  Fifty Shades of Grey.  I talk to loved ones over the phone.  My parents, my family—they kind of give me, you know…If I’m having a bad day, they add a smile to my face and help me look forward to the next day.  Symptoms vary from month-to-month. I can experience different symptoms or repeat symptoms, but I know my body better now than I did the first year of my diagnosis.  So I don’t react over certain illness symptoms I experience.  I have a great support system that helps me get through my good and bad days.  I usually experience relapses quarterly, which is good, because in the beginning it was every month.  [So there has been improvement].  Yes, I’m getting better.  There has been a lot of improvement.  I recently stopped taking Gilenya back in August after one of my bad three night stays at Piedmont Hospital.  I felt like a guinea pig.  I felt like some of the medicines they give us to slow progression do more harm than good.  They give worst side effects than I was already feeling.  Being off of it for the past six months, I experienced fewer relapses.  Now I’m trying to steer myself towards natural herbs.  I’m trying to see if I can remain off of it, but supplement with natural herbs.  [I would definitely like to do a follow-up segment on the experiences you have with using a natural approach.  That’s something I think anybody facing a health challenge would be interested in.]  Doctors will tell you that they aren’t trained to tell you what natural herbs to take, but we don’t shy away from them.  There are a lot of people that have MS that choose not to take the medicines.  They take natural herbs instead.  They try to have a good diet and exercise to improve their quality of life.

Q8.  You touched on this a little, but I want to get straight to the point.  Is there a dark side to living with MS? 

Renesha:  Yes, there is.  There definitely is.  There can be a very depressing side to MS.  I can’t speak for everyone because no one shares the same symptoms with this unpredictable autoimmune disease. Everyone’s symptoms are different.  Any doctor will tell you this.  It’s a learning curve because the symptoms I may get, you may not get.  The dark doors I get, you may not get.  You may have a better handle on it. You may not.  But I go through periods where I feel like a burden on others.  I put a lot of pressure on my caretakers.  I hate when people baby me. I just want to feel normal, and do my normal activities.  I want to be the old Renesha that I used to be.  Sometimes, I feel unwanted and wonder if I will ever have a chance to be a mother.  That’s the biggest thing because I’m 32 now.  I’m at that stage in my life where I do want to have kids, but I don’t want to put it on a caretaker to take care of me and a child.  So I question if I’ll make that choice or not.  I know there was a time back on ’08, back before I was diagnosed with MS, when my doctor told me that I needed to have a baby to put my body in reverse to get healthy.  I couldn’t understand then.  I got other professional opinions, and they agreed.  They said as I get older, I’d get worse.  Then, I did get worse, getting diagnosed with MS.  [So you’re saying there was a point in time when the medical recommendation was that if you are interested in getting pregnant, you really should do it earlier in your life.]  I had a procedure.  I had a surgery.  I had a benign tumor on my right ovary.  My doctor wanted to save it so that I could have the option to have kids.  He said if I didn’t want the tumor to come back, I needed to start thinking about producing a child to put my body in reverse.  [I can’t say that I would’ve thought of that.  It’s surprising.] I know.  I wondered if the doctor was just old school.  I said let me get some other professional opinions and everyone agreed.  I was just like oh my God.  Will my baby be my health ticket to get back to feeling better again? Those are the things I think about, but I don’t know because I haven’t tried it.  I know that when you’re pregnant your body goes into remission.  That’s a good thing.  This is why a lot of women with MS have kids. It’s because they like to go through remission.  They’re doing studies on the estrogen and hormones that are produced during pregnancy to see if they can be used for treatment.

Q9.  If this isn’t too personal, is having a child still an option for you?

Renesha:  Yes, I’m giving myself to 35.  35 is my limit. If not, then I’m just going to…

Q10. You’ve mentioned that you have a support system and caretakers.  Talk a little about what helps you the most?  How do you find strength and inspiration when things are at their worst?  

Renesha:  What helps me the most is my faith in God.  My church family is my biggest support system including my family and friends because they keep me in their prayers for strength and healing.  When I reflect on my situation, I come back to reality.  Somebody else has a story that is ten times worse.  I can still walk.  I can talk.  I can run. I can stay busy and active versus some people who are restricted to a wheel chair.  They may have lost their ability to speak. They may need help to breathe.  They may need more hands-on. They can’t work anymore.  They may be on disability if they can’t keep a part-time or full-time job.  So I really count my blessings.  God uses my gift, which is my ability to gravitate to people from one conversation.  I believe that I’m that soldier who will help spread the word until we find a cure.

Q11. [I’m inspired just by listening to you.]  Can you recommend support resources for others who are living with MS?

Renesha:  I definitely can.  I would try reaching out to support groups on Facebook, Twitter, the National MS Society and MSSA.  You’ll see different people who are going through the same thing. They can guide you to references and information you may be seeking.  Whoever you receive your MS treatment from may have dinner invitations to hear speakers who will give you a chance to ask questions that you may not be able to ask your primary care physician or neurologist. You may want to look into the Obama Health Care Plan if you need insurance.  If you need assistance such as medical or financial, you can look to your local state chapter of MSSA.  If you have no insurance, you should see if your doctor or hospital has assistance from private financial programs, which people donate to.  They won’t tell you unless you ask.  [That’s an important point. If you don’t ask, you won’t know and you won’t get the benefit.] Yes, because my first year being diagnosed, I accrued up to $40,000 in medical bills because my insurance didn’t cover much at all.  Then, there was a time when I was laid off and received unemployment and had no insurance.  I definitely relate to those who have no insurance. I had never had any medical debt.  This was more than my student loans.  I called doctors and hospitals to see if they had private programs to help get my balance down.  Thanks God I was able to get my medical debt down to $2500 after one year.  [Amazing!]  You can apply for disability if you can’t work full-time. I have a health awareness show in the works with a step-by-step guide for those who are newly diagnosed and do not know the next steps to take control of the disease and not let it take control of you.  [This is another good topic that we can come back to at a future time.]

Q12.  March is MS Awareness Month.  I know this is a busy time for you.  Tell me about what you’ll be doing to increase awareness in the Atlanta area and beyond?

Renesha:  This will be my third year participating with the MS Georgia Chapter.  It feels so liberating to see people battling the same disease as you are marching with their heads held up high with pride because they are celebrating life with their loved ones by theirs sides. I also decided to go the extra mile by raising money for my team this year.  I’ll be having a cook-off event to raise funds.  I was really surprised how many people wanted to spread  awareness and donate to this fundraiser.  This is my baby.  So hopefully we do really good work. I’m not going to stop until we have a cure. So whatever resources I have to go through to raise money, I’ll do. .  [When is the cook-off fundraiser?]  It’s April 6^th (see flyer below).  [You have a  team, too…]  Yes, we’re called the MS Dominators.  Our slogan is “We dominate MS, rather than react to it.”

Q13.  What’s the one thing you want people to understand about MS?

Renesha:  On a positive note, I want people to realize that living with MS is not baggage. You never asked for it.  It was given to you, but you must ask yourself why. When my mother asked me what gift I had, it made me think about the good deeds I could do to overcome this illness.  I wanted to be a living testimony to those who may want to give up. We all have something special and that’s why we were chosen. Not everyone is built to live with Multiple Sclerosis.