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The Questions Get Harder and Harder

So the neurologists, journals, literature, and personal stories were pretty accurate. Their bottom line was that Multiple Sclerosis was degenerative. What I discovered rather quickly was that the translation to said bottom line was simply “it ain’t gettin’ no better”… And it hasn’t. Hence, with each piece of information I’ve received along my journey with MS, I find myself with new questions. I also find my questions get harder because the information received never gets easier to process. I knew the answers I needed wouldn’t necessarily be medical answers to see me through.

In the beginning:

“We have to test you for Multiple Sclerosis, and we have to test you today!”

My question: What if I actually have MS?

Answer: “God, grant me the serenity to accept the things I cannot change…”

“At this point, we’re not going to put you through a spinal tap. We’re certain with the results from your MRI that you, in fact, have Multiple Sclerosis. There are a significant number of lesions on both your brain AND along your spine. It’s important that we select a DMT, which is a Disease Modifying Treatment, as soon as possible. There are several to choose from, but unfortunately, they don’t make MS go away. As of right now there’s no cure; however, the DMT’s are meant to slow the disease’s progression.”

Q: How am I going to know the DMT that’s going to work best for me?

And wait… no cure?!

A: “…Courage to change the things I can, And wisdom to know the difference…”

Several years later:

“At this time, perhaps it’d be beneficial to start looking into disability retirement.”

Q: How will I maintain financial stability on a fixed income?

Is SSDI enough? And what about insurance?

A: “…Living one day at a time, enjoying one moment at a time; accepting hardship as a pathway to peace…”

Then several years after that:

“Based on the years you’ve had MS, your personal course with it, your current experiences and MRI findings – or lack thereof, I’m confident that you have transitioned into the Secondary Progressive stage of MS.”

Q: How do I deal with THIS?

A: “…Taking, as He did, this sinful world as it is, not as I would have it; trusting that He will make all things right…”

And presently:

Faced with the fact that essentially, ‘it ain’t got nor gettin’ no better,’ enduring new symptoms and an increased decline in various areas, the hardest questions I’ve had to ask myself at this juncture are:

Q: Now what? What about my future?

A: “…If I surrender to His Will; so that I may be reasonably happy in this life and supremely happy with Him forever and ever in the next…”

I have lived with MS since 2007 and I’m still here, still smiling and still making my life ‘work’. I must be doing something right, wouldn’t you say? Ultimately, I encourage every warrior to trust your instincts, your specialist, your God and take serious heed of the Serenity Prayer.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • jumblejuls
    4 weeks ago

    Diane,

    I too have SPMS and was diagnosed at 25. I turned 50 this year and have had MS half my life, that was jolting.

    I try to stay positive and do all I can. I may have to take all day to shower, dress, put on makeup and my jewelry to attend an event in the evening. Although this brings me down at times I figure it is worth it for being able to enjoy the socialization.

    Since I retired I have few friends and that is hard at times. My marriage of 23 years is kind of rocky. I am a responsibility now, so am trying to get the love back.

    Here’s to you. Keep on rolling along. MS doesn’t have us, we have it.

  • asapcynthia
    2 months ago

    I was considered SPMS years ago. The walking got slower and my garage looks like I’m going to have a DME sale because I’ve tried everything just to be able to stand up straight. So twenty five years dragged on, and then suddenly, out of the blue, my bladder erupted like Niagara Falls and hasn’t stopped. Now I know what they meant by ‘what fresh hell is this?’

  • Dianne Scott moderator author
    2 months ago

    Hi @asapcynthia,
    MS can really take us on quite a ride, but it sounds like you haven’t fallen off of yours. Keep your sense of humor, my friend, and keep on hanging in there!
    Thanks for reading and taking the time to leave a comment..
    Best, Dianne ♡

  • Ahollmann22
    3 months ago

    Great information. I am experiencing similar experiences. I hit my own personal breaking point, although, I respect my medical team. I am going for a stem cell option, the medications approved make me feel worse. That is part of the problem. I have a lot of life remaining, whether that is personal or professional. I am not giving up….

  • Dianne Scott moderator author
    2 months ago

    @ahollmann22 … “I am not giving up…”
    Yes indeed.. I love your spirit! Keep on hanging right in there and best wishes to you on this journey! Thanks for reading and sharing..
    Warmly,
    Dianne♡

  • Sarasshore
    2 months ago

    Ahollmann22-I went to Panama last year to receive donated cord blood stem cells that are not FDA approved here in the US for whatever reason. The best advice I can give you is to get your body as healthy as possible before you receive your cells. Eat the healthiest food you can. Do a cleanse for toxins, parasites and whatever else could have a negative impact of the stem cells so you give them the best chance to reset your immune system or get rid of any inflammation you might have, just be the healthiest you can be to allow the stem cells the best chance to do what they’re supposed to do.

  • asapcynthia
    2 months ago

    I’m curious. Did it work?

  • Dianne Scott moderator author
    2 months ago

    Hi @sarasshore!
    Thank you so much for reading and sharing such great advice. Your support is much appreciated! Best wishes to you as you travel this MS path..
    Best,
    Dianne ♡

  • ollady
    4 months ago

    I have had ms for 21 years. I have been very fortunate with God ‘s help have been in the hospital a few times. Right now I am having a lot of the pain and not able to walk real well. I still use a walker and trying not to use a wheelchair. But only God will know what happens. I have used copaxone for the time I have had ms and has helped a lot.

  • asapcynthia
    2 months ago

    That’s a real though line to cross-from walker to wheelchair. That’s where I’m at. The good days are still good, but not as good as before. I really wish insurance would pay for a scooter. That is a great bridge from walking to wheelchair. Some high tech wheelchairs that looks walkers come across my feed, but they have no CPT code, and really priced out of my reach. I”m checking Craigslist often for a used one.

  • Dianne Scott moderator author
    2 months ago

    Totally understand @asapcynthia.. That was a difficult transition for me also. Perhaps the MS Foundation who has a Brighter Tomorrow Grant could help you pay for a scooter. You can find information about it here:
    https://msfocus.org/Get-Help.aspx
    Good luck to you!
    Best,
    Dianne ♡

  • Shelby Comito moderator
    4 months ago

    Hi @ollady, thank you so much for sharing your positivity and a bit of your experience here. If you feel comfortable doing so, we’d love for you to share more of your story as it can be such a help for others – https://multiplesclerosis.net/stories/ Thanks again for taking the time to share your thoughts. We’re here for you! – Shelby, MultipleSclerosis.net Team Member

  • asapcynthia
    4 months ago

    Things have come a long way. I hate when I say this, because I probably sound like an old crone, but I was diagnosed before the MRI. MS was diagnosed in three stages: possible, probable, then definite. It was diagnosed purely by how your doctor judged his or her clinical findings. After enough time and clinical evaluations, and ruling every else out, then you got a diagnosis of MS. It was during the possible phase MRIs became available, and low and behold those dreaded lesions in my brain and on my spinal cord appeared so I went from possible to definite in an afternoon. I didn’t know anyone with MS. I was 34 with two little kids, and the main breadwinner because my husband was self employed. I was lucky I had a good job, I was able to go out on medical leave for three months. I admit I still sent the kids to the sitter since I liked where they were and didn’t want to lose our spot because I knew I was retiring to work. I mostly spend the time laying on the couch watching the OJ Simpson trial pondering my future. Well, my future came and went. I went back to work for fifteen years and then went out on disability when it became too much, my husband got a real job with benefits, and my kids both graduated from college and have established lives of their own. So time will pass whether you are on the couch feeling sorry for yourself or out in the world doing your best. I recommend the latter. Life is a lot like MS, you’ll be happier if you adapt to what happens along the way. It takes more than an iron will to get along, it takes flexibility to roll with the punches. My personal mantra was: God didn’t bring me this far just so I could fail now.

  • Shelby Comito moderator
    4 months ago

    SO appreciate you taking the time to share your thoughts and experience here. I find your positive, attitude given all that you’ve been through, truly inspiring! If you feel comfortable, we’d love for you to share your story with the community: https://multiplesclerosis.net/stories/ It can be such a help to others! Thanks again for taking the time to share. – Shelby, MultipleSclerosis.net Team Member

  • asapcynthia
    4 months ago

    I mean returning to work.

  • WalterTHIII
    4 months ago

    Since I was DXD IN 2000, WENT ON DISABILITY IN ’03, I can only give ALL grace and Glory to God. I have gone through a change of address, a near failure of marriage, a bankruptcy, a DVT, a heart attack and even now, still using a wheelchair, I still have my loving wife, my supportive church, just enough money in the bank for my family to stay housed and fed. All for Gods good will!

  • Dianne Scott moderator author
    2 months ago

    Praise God, @walterthiii!
    You’re journey hasn’t been easy and even now, with the challenges that MS brings, you are still living your life with positivity and praise in your heart.. Kudos to you, my friend, and may God continue to bless you and your family.
    Thanks so much for reading and sharing your thoughts!
    Best wishes to you,
    Dianne ♡

  • collena
    6 months ago

    “it is what it is.” -my mantra.

  • Dianne Scott moderator author
    6 months ago

    Yes, @collena, I suppose you’re right. Thanks for reading!
    Take care,
    Dianne ♡

  • StephanieEVC
    6 months ago

    Well written. I give the lord thanks and ask him for help each morning to be able to make sure I’m able to overcome the challenges of the day with the MS. I do this as routine but not with my whole heart at times… Until for example, when I’m expected to keep up with my husband when he’s walking around normally not bothering to see me stumbling behind him or grabbing to hold onto a wall or surface so I don’t fall when I quickly say a prayer “lord please don’t let me hit the ground” I usually make it that split second before I end up taking the tumble. Thank you for the article God is the only reason I think, I haven’t done the testing for different medications and have been able to make it this far.

  • Dianne Scott moderator author
    6 months ago

    Hello @stephanieevc !

    I definitely get it.. Whatever it takes, just hang in there, my friend.

    Thank you for reading and sharing,
    Dianne ♡

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