Still going after ALL these years. - My MSAA Community

My MSAA Community

8,949 members20,673 posts

Still going after ALL these years.

mepilot61 profile image
44 Replies

Hi everyone! I am Mary Ellen Anderson, and I have MS. I was diagnosed Sept 10, 1998. I had mono that spring, and I think THAT is why I got MS. I wasn't put on meds until 2000, cause I didn't need them, or so my dr thought. I first went on Avonex, and was on that for 8 1/2 years. I had SIDE EFFECTS, for the ENTIRE 8 1/2 years. Next, I went on Tysabri, and I LOVED that drug!! I FELT better, I LOOKED better, and I DID better. BUT, after I'd been taking it for a few years, I tested positive for JCV, so I got off. I DIDN'T WANT to, but I did. Then I went on Tecfidera, and I'm still on it. I didn't like it at first, cause I didn't feel AS GOOD, I didn't LOOK as good, and I FELL more. But I've been doing pretty good on it the past year or so. I taught sped for 23 years, and retiring in just 23 years was NOT in my plan. I have been going to physical therapy for several years now, and I KNOW THAT is what keeps me going. I used to get a weekly massage, and THAT helped as well. But my therapist moved several miles away, so those ended. I recommend BOTH pt AND massage for ANYONE with MS. I can still drive, cook supper five nights a week, clean my house, and go deer hunting. I thank GOD for ALL these things!!

Written by
mepilot61 profile image
mepilot61
To view profiles and participate in discussions please or .
Read more about...
44 Replies
WAshingtongirl profile image
WAshingtongirl

Hi, Mary Ellen. It sounds as though you are an MS veteran. So you taught special ed? Bless you for that! I think many here (me included) 'mourn' having to leave or give up what we loved doing before we were ready to.

Deer hunting? Never been. Not sure I could, though I've not been too happy with Bambi when all my roses disappeared overnight. 😡 But I am happy you can still do what you enjoy.

What type of massage do you recommend? My doctor recommended I get my calves and feet massaged. She thought it might help loosen the tight muscles due to foot drop. But I wasn't able to find anyone in my area that did it. Just haven't pursued it since my first failed attempt.

So happy to meet you. Thankful you are here! 💕

mepilot61 profile image
mepilot61 in reply to WAshingtongirl

Hi Tutu,

I am so happy to meet you too!!! I LOVE this sight!! Yes, I guess I AM an MS veteran. Never WANTED to be that, though. And yes, I taught sped for 23 years. I always had a resource room. So I taught A LOT of things. The first school I worked in, I was there for 19 years. And when I first started, back in the fall of '84, I was the ONLY sped teacher in the whole school. It is a very small school, with k-12 on the same campus. So I taught k-12. The last few years I was there, though, I got to choose what ages I wanted to work with. I chose the 9-12 grades, and I LOVED it!

Yes, I still go deer hunting, although I've not been this year (yet). I hope to sometime, though. I am VERY heat intolerant, but I have NEVER liked the COLD. So I try to go before it gets REAL cold. I live in NW Arkansas. I used to FISH A LOT, but, being heat intolerant now, I don't go fishing anymore. I CAN go in the spring or fall, when it's NOT HOT. But, I worry about the rocking of the boat, and falling out. So, I haven't been fishing in a long time. My husband and I used to fish tournaments. A LOT. We did pretty well, too. I don't really miss the tournaments, though.

I learned how to scuba dive, but I don't do that anymore, cause my balance is HORRIBLE. I wouldn't be able to walk with a tank on my back. I made a childhood dream come true, when I learned how to FLY. I CHOSE to STOP that, for fear something would happen to me while I was flying. I miss that, the MOST.

I don't know what happened to the first message I was working on, but it disappeared. In case you didn't get it, my massage therapist never gave me a deep muscle massage. And I got a full body massage. She worked on me for an hour. And she knew reflexology, which was GREAT! She always started with my feet, and could tell me ANYTHING that was going on in my body, BEFORE I knew it!!! My neurologist thinks THAT is why I'm not very spastic. Me getting a weekly massage. I highly recommend it!! That and physical therapy. I go three times a week, just to exercise. I have met some GREAT people there too. It is MY social time, since I can't teach anymore. My therapist is GREAT!! The BEST one in this area, I FIRMLY believe.

I live in NW Arkansas. I was born and raised in Harrison, but ever since I got out of college in the spring of '84, I have lived in Berryville. It is only about 20 miles from the Missouri border. I have no kids, although I call my Lucy MY KID. She is my basset hound. I DID have two mini dachshunds. both boys, but I lost BOTH of them this past July. THAT about broke me. I ceased to function that WHOLE month.

I hope to hear from you again!

WAshingtongirl profile image
WAshingtongirl in reply to mepilot61

You remind me of my husband. I call him The Adventurer! We joke about that saying: Attitide is the difference between ordeal and adventure. I have an upbeat, positive attitude. But some of his ideas of fun set my heart racing in a panic. 😱

I've backpacked 3 days through Haleakala with my own backpack, while wearing an AFO and using forearm crutches. I've kayaked and camped along Kauai's Napoli Coast for 6 days while in a relapse so bad I could barely walk. I laughed when my husband recently asked me to sail around the world with him. My balance is so bad, I'd fall overboard while pulling up the first fender! In some ways, I've earned the right to pull the MS card. 😉

I tried scuba, but flunked the pool test when I nearly clawed the instructor to death. Those weights and that sinking feeling had me gasping for air. I don't think he was sad to see me drop out of the class.

My husband asked if mepilot stands for multi-engine pilot. He also flew. Just retired in May. Me? Bet you know the answer to that!

Keep that adventurer's spirit! 💕

mepilot61 profile image
mepilot61 in reply to WAshingtongirl

Hi again,

Thanks for the response. I love hearing from you.

The me in mepilot, is my initials. My name is Mary Ellen. And, I am a pilot. I only flew single engine planes. Never had a chance to fly anything else, but my flight instructor always told me I would make a good helicopter pilot. I had A LOT of trouble with my landings. He flew a helicopter in the Viet Nam war, so I figured he knew what he was talking about. I've never had the chance to fly a copter either.

I flew IN a hot air balloon once, and it was GREAT! I've also flown IN a blimp, and I LOVED that too!

It sounds like YOU have the adventurer spirit too. I just wish I could go hiking again. My husband and I used to dig for arrowheads, and that was always fun. I miss that too. We haven't done that in YEARS, though.

It is my bedtime, but I just wanted to answer your note. I will talk with you again tomorrow!

mepilot61 profile image
mepilot61 in reply to WAshingtongirl

Hi again,

No, I wasn't a multi engine pilot. Just a private pilot, cause it was ALWAYS a DREAM of mine, to FLY!!! So I made it come true!!! And SO THANKFUL for that!!!

I try to get to the airport a few times a month. I help with the monthly fly in, the third Sat of every month. We cook breakfast for whoever wants to come, either by plane or four wheels. The airport is my favorite place to be!!! Around HERE, anyway. ha.

Today, I am DREADING going to walmart. I have a few groceries I need to get. I ALWAYS dread that.

I hope you are having a good day!!!

WAshingtongirl profile image
WAshingtongirl in reply to mepilot61

mepilot61 , are you able to fly anymore? If not, isn't it a joy to be able to know you realized your dream? I've felt that way about a number of things. Even if I never accomplish them again, the view in the rear view mirror still brings me joy today.

Your monthly assistance with the fly ins reminds me of CalfeeChick and her continued involvement with her bike race/group. I think what you're doing is fabulous!

I was debating about going to Walmart today, too. I'm afraid I've decided I'm not up to it at the moment. I'll do it another day. 😉But good luck to you! Maybe I can ask you to pick up a couple things for me while you're there...😂

Wishing you a great day too. Thank you! 💕

mepilot61 profile image
mepilot61 in reply to WAshingtongirl

Hi again, Tutu! I am back from walmart, and I DIDN'T get everything I NEEDED. TWO of those things were ON MY LIST, and I DIDN'T get them. I HATE when I do this. I think I will just go to Pricecutter either tomorrow or Friday, to get what I didn't today. It is HOT outside!!! I am VERY heat INtolerant. Are you?? This trip was HARDER for me, since it's HOT. I'm GLAD it's OVER!!!

I DON'T fly anymore. And NOBODY TOLD me I HAD to stop. I stopped on my OWN. I know how this stupid disease can change in the BLINK of an eye, and IF MINE changes, I didn't want to be IN THE AIR. So, I STOPPED. But OH, HOW I MISS IT!!! I can't afford it anymore anyway, since I can't work anymore. I got to take a FLYING RIDE a few months ago, cause a friend who also helps out at the flyins asked me if I wanted to go for a ride?? HA!! I couldn't answer fast enough!!! I will fly, or RIDE, with ANYBODY who is willing to take me up!!!! But, I don't get that chance hardly ever. I am cooling off since I got home and got unloaded. I turned the AC down a degree, so it would run, I have my ceiling fan on high in my bedroom, and I am JUST SITTING. I sit on my bed, and I have 3 dogs, and they are on it with me! My two puppies are right beside me!! They KNOW it's HOT outside too!! I wish I COULD HAVE picked up the things you need from walmart. I WOULD HAVE, GLADLY!!! IF you went, I hope it went WELL. Have a NICE afternoon!!!

WAshingtongirl profile image
WAshingtongirl in reply to mepilot61

Like you, I've returned home without things on my list. Do you mark the items off your list as you put them in your basket? I do that, but I still mess up, even when I look at my list before I head to the checkout. It's so frustrating!

Yes, the heat really bothers me. Fortunately,it rarely gets too hot in Western Washington. It's only 58 degrees now. I spent hours working out in the yard. Perfect day (overcast and cool) to do so.

I hope you get more opportunities to fly. Do others know of your desire to do so? Spread the word!

Enjoy your pups. I hope you've cooled off. Enjoy your evening!💕

mepilot61 profile image
mepilot61 in reply to WAshingtongirl

Yes, others know about how I LOVE to fly, and I have gotten 3 rides so far!!! And LOVED them!!! I even got to FLY on one of them, for a while!!! I LOVED that!!!! And I don't mark things off my grocery shopping list, cause I NEVER have a pen or pencil with me. I guess I need to START, though. Just another one of those MS things.

jackiesj profile image
jackiesj in reply to WAshingtongirl

suggestion:ask what kind of massage they do.I went to someone who wanted to put a crystal in my bra......ok really......That was halfway thru a massage. I truly believe can relieve pain, release toxins etc.This one taught me to check references, I got up and ran.Doc referral is a good thing.

mepilot61 profile image
mepilot61 in reply to jackiesj

Hi Jackie. I haven't had a message since my therapist left many months ago. I keep thinking I will try the one in town, but I haven't yet. And now, I can't really afford it anyway, I've never heard about the crystal.

jimeka profile image
jimeka

Hi Maryellen, glad you have joined us, I hope you get the answers you are looking for. You certainly are active, deer hunting? I am a farmers wife and daughter, and I am sorry but I love going down our fields and seeing the deer, they are beautiful, I was once at an agricultural show and was cleared away from in front of the stall, they were selling Bambi burgers, and I voiced my opinion, my husband was well embarrassed it was a good laugh. My husband used to belong to a shoot, pheasants, partridges etc, by the way I live in the uk, so seeing deer is a novelty. Anyway someone on here will be able to answer any question you may have, blessings Jimeka

mepilot61 profile image
mepilot61 in reply to jimeka

Hi Jimeka

Thank you for responding to my post. I am glad to meet you! I live in NW Arkansas, so YES, I deer hunt. We are RUN OVER with deer right now. I haven't been this year (yet), but I HOPE to go. I HATE cold weather, so I usually don't go in the middle of winter.

I'm sorry you don't have many deer where you live. I'm like you, and ENJOY SEEING them too!! And NO, I DON'T want to shoot EVERY one of them I see. I just enjoy being in the woods and WATCHING them.

I hope I can hear from you again sometime!!

vduckery profile image
vduckery

Hello from Little Rock, AR! I am thrilled that you are doing so well in spite of this nasty disease.

mepilot61 profile image
mepilot61 in reply to vduckery

Hi Vduckery,

It's good to find someone who lives in Arkansas! I live in Berryville, which is in the NW corner. We are only about 20 miles from Missouri. I've been to Little Rock, but that was back when I was still teaching. Since HAVING to retire, I never go there anymore. Unless I'm going THROUGH Little Rock, which I don't do that anymore either. I've heard there is a good MS dr down there. My dr is in Fayetteville, so it's about an hour and a half drive for me. Thank goodness I only go see him once every 6 months.

I hope you are doing well. I have good days and bad days, but my good ones outnumber my bad ones, thank God. I hope to hear from you again sometime!!

vduckery profile image
vduckery in reply to mepilot61

I see we have something else in common, we are both educators. I taught for 17 years. Now I'm a library media specialist in a k-5 school. Like you, I have good and bad days. So far it hasn't kept me from working. What caused you to give up teaching? You still seem pretty active. I was diagnosed just shy of a year ago in January 2016 so I'm still very active. I mainly only have problems with my right lower leg and toes. I have noticed that depending on what I eat or how active I've been, the numbness and tingling spreads sometimes up the leg and back or hands or sometimes just randomly anywhere. This is a strange beast indeed. That's a long drive to see your doctor. Mine is only a few minutes away. He's supposed to be the best in the city but I'm not impressed. I think he has too many patients. Their response time is much too slow. I'm wishing you success in battling this thing.

mepilot61 profile image
mepilot61 in reply to vduckery

Hi vduckery,

CUDOS to you STILL teaching!! That is GREAT!!! I stopped, because it was getting harder and harder for me to keep up with ALL the paperwork that goes with teaching sped. My brain slowed WAY down, and I was tired all the time. SO, I hung it up. But, the first 3 years after I'd retired, I volunteered in my best friend's 4th grade classroom. I loved it! But, I had to stop that, when I started having bladder problems. Now, I go to her 5th grade class once a week. I'm thankful I can do that. I had a bladder pacemaker put in last January, and it helps.

Yes, this IS a strange beast we have. I wouldn't wish this on ANYBODY. I just try to take one day at a time, and do all I can every day. Some days, it's NOT MUCH, though.

I wish YOU LOTS of success in battling this STUPID disease. I hope to hear from you again sometime!!

vduckery profile image
vduckery in reply to mepilot61

When they say you learn something new every day, that is certainly true. I had no idea there are pacemakers for bladders! I really need to look into that. I am a pee professional. LOL

Jesmcd2 profile image
Jesmcd2CommunityAmbassador

Hi mepilot61 and welcome. I can tell you love the outdoors :)

I had to laugh about the hunting. My whole family hunts. Except for me. And that included my mom. My oldest daughter bagged her 1st at the age of 6 with my dad. ( the only one l would trust to take her ) She still hunts.

As far as fishing goes? Wellll, l dont eat it. And l dont use a hook, but l CAN cast. Better than all my brothers (l have 5) and my dad. :D

Welcome again :)

mepilot61 profile image
mepilot61 in reply to Jesmcd2

Hi Jesmcd2,

Thank you for responding to my post. Yes, I LOVE the outdoors. But, since I've become VERY heat intolerant, it has cut down on my outside time.

I didn't start deer hunting till after I got married. I never was exposed to it as a child. My dad never deer hunted. He just bird hunted, and I've never done that. So my FIRST deer came MUCH later in life than your daughter's!

Thank you for the welcome!! Hope to talk with you again!!

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to mepilot61

Hi mepilot61 l had along talk to her about 1st and she was quite prepared to go. And my dad had the land. So there were no others on it. We thought for sure she would back out, but she is just to adventurous.

mepilot61 profile image
mepilot61 in reply to Jesmcd2

GOOD for her!!! I love to hear about young people getting a deer!!

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to mepilot61

She's psycho I can't stand hunting, l understand the need for it. Especially with the over population, but l dont like and l refuse to eat it. Lol

mepilot61 profile image
mepilot61 in reply to Jesmcd2

Our diet is mainly either deer or elk meat. I NEVER have to BUY meat, and that is a GOOD thing. I DO buy chicken, but most of the time, it's CANNED. I try to have chicken one night a week. And Tuesday, I fixed beans and cornbread. I LOVE those things!!

WAshingtongirl profile image
WAshingtongirl in reply to mepilot61

My husband wants to know what time is dinner next Tuesday?! ☺️

mepilot61 profile image
mepilot61 in reply to WAshingtongirl

Well, I always try to have it ready by 6. My husband gets home about ten minutes before that, unless he goes to check his deer feeders. So tell him 6!!

WAshingtongirl profile image
WAshingtongirl in reply to mepilot61

He'll be there!! 😉

mepilot61 profile image
mepilot61 in reply to WAshingtongirl

Okay!!! I'll be expecting him!!! hee, hee!

WAshingtongirl profile image
WAshingtongirl in reply to mepilot61

💐

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to mepilot61

Now see l can agree with eat what you kill, living off the land. Not killing for the just of it. I still won't eat it tho mepilot61 :) you can have it WAshingtongirl :p

WAshingtongirl profile image
WAshingtongirl in reply to Jesmcd2

I don't eat deer or other game (other than what I buy in the grocery meat case), but my husbandloves beans and cornbread. I don't care for that either. 😉

TracyBelle profile image
TracyBelle

I grew up in Little Rock, but never hunted. All the men and boys went, and they are only allowed to shoot deer they have a "tag" for (kinda like a fishing license). The deer population in Arkansas is so large that hunting season is a necessity. The environment cannot support the massive amount of animals and many would starve. The game and fish commish only allow a scientifically determined number of tags per year. This curbs both overpopulation and negative results from inbreeding. I could never shoot a beautiful animal like that, but it is for the betterment of the species. It also lowers the number of injuries and amount of damage caused to cars by "Deer Crossings". The meat I have only eaten in Deer Chili, and it was great. However, for low income families in rural areas this is a "free" source of protein that can be frozen and eaten all year. That is the way God intended it. There are many rural families who can't afford to go without this vital food source. And it is closely regulated by the Game and Fish commission so the population remains steady.

mepilot61 profile image
mepilot61 in reply to TracyBelle

You are SO RIGHT, Tracy!!! My husband and I ONLY eat either deer meat or elk meat. He goes to Idaho each year, to bow hunt for an elk. He didn't get one this year, so we NEED several deer. I like it when our freezer is FULL of deer meat!! We WERE out of BOTH, deer AND elk. But my husband got two SMALL deer, so we have some now. Just not A LOT. He is still hunting. He's got a doe at a processor right now. It'll be about a month before we get that meat.

Sulton profile image
Sulton

Hi Mary Ellen. Thank you for your story, it sounds better than mine, lol. I've had MS for more than 13 years and was started on Avonex. My body hated that drug, by the time I recovered from the first week shot, it was time for the next. I had gotten a written warning from work because I couldn't go in, I would get so sick from that drug. The doctor finally switched me to Copaxone, which worked very well for a few years until we moved south to NC. My new neurologist at duke switched me to Tysabri. I was scared to be on that, but I did it anyway for >4 years. I had rapid weight loss, but still stayed on it. My migraines had gotten a lot worse that lasted for days and I got a weird case of Raynaud's of the feet and hands. Then, I started getting tooth infections that would not go away, an abscess in my lower jaw that caused cellulitis of the whole side of my face. Suffice to say, I lost half my back teeth, upper and lower, I don't have bad teeth or gingivitis. I finally went off of that, waited 1 month and started Tecfidera. Some people with MS have "itchy nerves" and I am one of them. One of the side effects of Tecfidera is flushing and itching but is supposed to go away within 24 hours. At least once/wk my body went crazy itchy while I was at work. I am a medical laboratory technologist, so I have to wear gloves all of the time. I had to tear those puppies off and go to town on my arms, legs and head every week and take a dose of benadryl. This drug also tore up my stomach, I have to take nexxium now. I lived with that for two years, couldn't take it anymore, now I'm on no MS meds, only symptomatic meds. I have not had any mouth or tooth infections for almost three years now and my implant and bridge are very well! 😀

thank you for reading, Donna

WAshingtongirl profile image
WAshingtongirl

You've had a rough time, Sulton . I'm happy to hear you are doing better now. Praying it stays that way. 💕

Sulton profile image
Sulton in reply to WAshingtongirl

Thank you! The best part is, I feel better. Still have good days, bad days, and best days. The best days are when I'm with my little miracle grandson, Mason who is turning 1 on 12/23. He always seems to lift my spirits, no matter what. I thought I would be too tired to take care of him when needed, but I think his energy rubs off onto me. It's awesome being an Oma!!

Thinking of you all

Donna

mepilot61 profile image
mepilot61 in reply to Sulton

Hi Donna,

I LOVE how you have BEST days too!! I think I'm gonna start saying that!

I'm so happy you have a grandson who helps you to feel better, and lifts your spirits!!! And I hope he has a GREAT birthday later this month!!

My husband, Jerry, is in the woods again this morning. The gun season ends this weekend, but will open back up around Christmas. He would rather bow hunt anyway. I haven't been yet, but hopefully I will FEEL like going this afternoon. I haven't really started my day yet.

It's gonna get COLD here next week. I live in NW Arkansas, and next Tues night, it's gonna be 29! And it will STAY cold for days after that. I go to pt on Wed and Fri, so I already DREAD going out. I HATE the cold!! Always have!!

I hope you have a good day!! GREAT to hear from you!!

Mary Ellen

WAshingtongirl profile image
WAshingtongirl in reply to Sulton

Yes, grandkids are the BEST! I love being a Tutu! ☺️

mepilot61 profile image
mepilot61 in reply to WAshingtongirl

I'm sure you DO!! I have FIVE grandkids, but it's ALL my husband's fault. I have NO kids, but he has two daughters, so that's where the grandkids come from. I don't get to see two of them very often, as they live in Delaware. The other two JUST moved to SW Missouri, in June, so I have seen them a couple of times since they moved.

No deer yet. Husband isn't home yet.

Later!

WAshingtongirl profile image
WAshingtongirl in reply to mepilot61

Happy to hear some grandkids have moved closer. Hope your hubby comes home happy!

mepilot61 profile image
mepilot61

Sulton, I am SO SORRY you have had such a ROUGH time. I PRAY it gets better REAL soon!

Sulton profile image
Sulton in reply to mepilot61

Thank you Mepilot61. Most things have been better

mepilot61 profile image
mepilot61

I am SO HAPPY to hear this!!! Thank you for letting me know, and I pray they CONTINUE!!!!

jackiesj profile image
jackiesj

Welcome! You are interesting and add to our group! We all want MS and illness to go away but we got each other for now...good writers in this group and lots of prayers....

You may also like...

3 years in, still not accepting

lesions. I've tried Tecfidera, and my body hated it. Now been on Aubagio about 1 1/2 years....

It didn't kill me after all

fund our quilting ministry. Then I got MS! I got several big quilts done, crocheted tons of...

After 30+ years...

over 30 years was changed to 'retired' today. I've been on a medical leave for the past year while I

Happy New Year to all!

2019 was a very difficult year for me health wise and with my diagnosis although I have had many...

Happy New Year to all❤️

i appreciate you. when i am having good days❤️ and i appreciate having a place to go when my husband