About me 😊

Diagnosed with RRMS 4 years ago. Treated with Aubagio. I , unfortunately , Have most of the signs and symptoms of MS. I have multiple health issues besides MS . I'm unable to work. I was working as an RN and volunteer paramedic before my diagnosis. I am a wife to the very supportive sweet man. Mother of 4 grown men ages 31, 29, 26 and 22. First time grandmother June 2016! When I'm able to, I love to quilt, garden and read. I love animals. I'm a very positive person who looks at life through a glass half full!

26 Replies

  • Keep the positive attitude. That's awesome! I love admiring quilts and gardens other people make/tend! Wish I was talented but nope... I sure enjoy reading and animals, though. Welcome to the group!

  • Hi Char66, I'm new here too but not new to MS, which I've had for at least 36 years now. Your jobs sound as if they were quite demanding, and there comes a time when working just is out of the question if you have MS. I like to garden and read too, and was trying my hand at quilting for a number of years. Nowadays I find crocheting easier. How are you liking Aubagio?

  • The Aubagio is working well. No real big serious relapses that send me to ER anymore. The beginning of therapy was awful with bad headaches.

  • Congratulations on finding something that works well for you!

  • I too am an RN with MS my question is if you have to stop working how can you afford to pay for what you have

  • mayestas Does your work have a short term or long term disability benefit? If work has become difficult or unsafe, you may want to ask HR what options are there for you. SSDI does not provide a living wage and you need to be on it for 24 months before you are eligible for Medicare for health coverage. Also Medicare Part D plans do not generally offer a great deal of help getting the oral or injectable medications and they can be quite costly. Fortunately, my husband's work supports us quite sufficiently.

  • I haven't been able to work since 2012. I could no longer function in my jobs. I have several medical issues contributing to my disability also. I collect social security disability. My husband works a good job also and is able to provide financially and for all health care. I also have Medicare part A . I am blessed.

  • It's a struggle I ask myself all the time. I'm thankful my husband works and I get Social security disability.

  • Char66 I agree. It is wonderful when there is an option to stop when we need to and have the slack picked up by a family member. But people often do not understand that SSDI is not a living wage. They also take out of your SSDI the costs of Medicare Part B and D when you get to the point of needing those. I remember my lump sum for the two years prior to my SSDI award was just over $4000 that was deposited into my bank account. My Monthly payment from SSDI was equivalent to 2 and a half days of work at my previous employment.

    I waited a full three years after I was no longer able to work part time and 7 years after I could not work full time to apply. That took my payment down drastically. They generally factor in the average income of the previous 5 quarters and if they do not have that, look at what you would be entitled to at 65, go by a formula with your current age and split up your pot of monies over time to go through retirement to an average age of 81 or so. It doesn't stop then but it is not a lot of money.

  • Welcome to MSAA! You sound very upbeat - a good way to be!

    WOW - four sons! And yet you seem quite sane! LOL!

    How are you doing on the Aubagio? One thing I haven't seen many discussing here is any 'other' health issues on top of the MS. I also have multiple health issues. It's a real eye-opener to realize that having MS doesn't preclude you from also having other issues!

    Maybe we could get a conversation going on this site about how people handle the reality of dealing with MS AND other health issues?

    Keep topping up your glass! :-)


  • A subject I identify with completely!! Shall I list them? Medicated for severe Fibromyslgia for 20 yrs(that neurologist said is MS but not altogether because MS doesn't cause painful trigger points), hypothyroidism, chronic bronchitis, severe allergies (even dust) (on prednisone for that and numero said that's not good), fatigue induced asthma, Delayed Sleep Disorder(sleep clinic diagnosis) Burning Tongue Syndrone (caused from severe case of thrush that destroyed tongue nerve endings) Bi-Polar, acid reflux, migraines. On meds for all those and now MS and Aubagio. Before 1997 I had taken nothing stronger than aspirin! And I take about 12 recommended supplements and sorta follow the Whole Foods protocol diet. And still in pain, fatigue, and most often brain fog! 69 and not what I used to be, but thankful I am still walking!

  • All that is awful. Sorry you have all that to deal with. ((Hugs)) I have too many also.

  • I will ! You do the same. That is a great idea to get this started.

  • Yes 4 sons who are very different and are true country boys, lol . I believe I am doing well on the Aubagio. Fewer relapses for sure. It's so true about the other health issues. Many times Other health professionals are fast to blame MS for what is going on. That's why it's important to be your own health advocate if you can.

  • You have the right attatude. You have MS it doesn't have you. Keep it up!

  • You bet!

  • Char66 I, too am an RN who is no longer working in the Clinical Arena. Went on SSDI in 2002. My daughters are 39 and 40 and I have grandkids aged 5-13. Now I satisfy my need to fulfill my vocation with occasional consulting jobs or speaking engagements as well as serving on a couple of National Health Care Advisory workgroups.

  • I do miss working in the clinical arenas very much. Unfortunately I don't have enough cognitive functions to do much anymore. But, I fulfill my time and satisfy my needs with my small hobbies with the help of my family. Which can be funny sometimes!!

  • Find the joy in the things you can do. If your grandchild is like ours, it will be the joy of your life. If hobbies become too hard, find new ones. I too have many symptoms of ms that limit my physical activity but I am pushing the envelope and trying new things.

  • Me too! I try to find new ways I can do something even though it may take longer. I love adventures!

  • i know its hard but never feel alone out there with this disease its been a ruff course with me as well RRMS at least i am grateful to still walk

  • Amen! I'm very grateful for what functions I have left. I may have to use a cane every day or a wheeled walker some days, but I'm still walking! Some days my family picks me up or prevents me from bumping into stuff, all I can do is laugh.

  • i can totally relate to that

  • Good morning Char66, it's fancy 1959 welcoming you to this wonderful Ms chat room / family. I love your positive attitude. My glass is always half-full as well even though I too suffer from a major health issue besides my MS. As long as you keep going it does not matter if you can no longer work. It sounds like you have put in long hours and worked in very satisfying areas. Find joy in what you can do. Don't give up your hobbies. Keep gardening and quilting even if it's only on your good days! Then there is the joy in being around to watch your new grand baby grow up and the grand babies that will follow. You might have to adjust your future goals and expectations but understand you still have that future. You will love this chat room. There are a lot of good people involved in here that will share their stories, their triumphs, and their sorrows. In doing so, it helps all involved figure out insights and even solutions to a multitude of MS conditions and concerns. Again I'd like to welcome you to our family and invite you to become an MS warrior with us. Understand that information is good and you will receive different views and a lot of information from this website/chat room. Together we are stronger. Never give up, never give in, instead fight on MS Warrior, fight on!

  • 😊 I love this site already and I am a MS warrior!

  • Welcome Char66. I was also diagnosed about 6 years ago and my husband of 38 years and I support one another because he had a stroke five years prior to my diagnosis. We are the parents of two sons ages 30 + 34 and both are married. We are first-time grandparents 2 a beautiful little girl who just turned 2 and who is the daughter of our youngest. We have left our old lives and careers behind in the southeast have made a new home in the south West and although we can't work anymore we spend our time doing what we love with animal rescue including volunteering at the Humane Society. Although some days are hard and we are so fatigued we almost can't stand it we force ourselves to get out of bed and go do something fun even if it's only to go see a movie or out for a meal. We have a regular exercise regimen we try to stick to religiously and it does seem to help. Best of luck with living with your MS. A positive attitude is a great start.

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