JHolland: An Update

So the verdict is in, and my neurologist has diagnosed me with Multiple Sclerosis. This is considered to be an immune-mediated disease, in which my own immune system essentially does irreparable damage to nerves in the central nervous system, causing demyelination of neurons which alters and inhibits neural transmission. The most commonly diagnosed form is called Relapsing/Remitting MS, which is what Dad has, and in most cases eventually, over 10-15 years, progresses to Secondary Progressive MS. In my case, the initial diagnosis was Secondary Progressive MS, meaning I likely cannot expect to ever return to normal for periods of time, only have ups, downs and plateaus that never leave me feeling 100% my former self, but may wax and wane and generally worsen over time. He did say that if I can tolerate the prescribed Copaxone, a 3 times weekly injection that mimics a protein in myelin, thereby allowing the immune system to “attack” the injection rather than the actual myelin in nerve sheaths, it is unlikely that I will progress to severe disability/wheelchair status.

Of course, I am still waiting on approval from the insurance company to actually start the injection, but the great news is that my symptoms, after worsening quite scarily all last week to the point where I could not carry a laundry basket a distance of 50 feet without stopping to sit down, and had to lean against walls, tabletops and countertops when standing more than 5-10 minutes… have now lessened to the point where I have very normal strength and energy and only mild numbness and tingling in my right hand, foot and knee! I really want to start that injection, like, yesterday, with hopes that it will forestall a repeat of last week!

Flowers from Guylty… I already ate the chocolates, and the wine is forthcoming, so those aren’t pictured here. =)

In fact, yesterday I managed to perform an ovariohysterectomy/spay and was able to find the uterus using my right hand- last week the prickling sensation and numbness overwhelmed all other sensory input and I’d never have been able to find the ovarian horn (without making a bigger incision and locating it by visualizing it rather than feeling for it). And that is if I could even manage to stay upright for long enough to do the surgery. So things are, indeed, looking up.

I want to thank all of you for your messages of love and support, and for the flood of prayers and good vibes that you sent my way. I never realized what a boost and a comfort it could be. I’ve also received a number of emails off-blog offering tips and support and love and morale-boosting.

The lovely Guylty, who knows me well, sent a gorgeous bouquet of flowers, a box of chocolates and a generous wine voucher! This came when I was at my lowest point, and almost nothing other than this particular combination could have cheered me.

Care package from Linnet Moss… another delicious treat, in more ways than one! =)

Then this week, another package arrived from Linnet, who took the time to create a one-of-a-kind “Dr. Armitage Prescribes” box… complete with humorous kitty cats and swoon-worthy Richard images… and a delicious array of Sugarfina candies! That Dr. Armitage was spot-on, and I have to say that as appealing as Dr. Hottie the neurologist is… he can’t hold a candle to this guy!

 

 

 

The Walking Dad and My Young Love… a smile-inducing duo if I’ve ever seen one!

Little Sister, who is full of pure love and my most constant source of hugs.

Meanwhile, I am actively doing everything I can to really supply my body with healthy food packed with vitamins and antioxidants- tons of fruits, vegetables and weird stuff like Kombucha and seaweed and on and on… I have to make a life change and do everything I can so I can stick around and be actively involved for these three… they are everything to me, and they need me.

I have so many reasons to be thankful, so many blessings in my life. And all of YOU are definitely among them. (((HUGS)))

 

 

 

Advertisements

41 comments

  1. Bonnie Williams · March 10

    God bless you. My brother has had MS for over 30 years so I can relate. Keep fighting for as long as you can.

    Like

  2. Buffy Brinkley · March 10

    My dear J, my prayers continue to be with you and your family as you move forward toward treatment. Good thoughts and vibes for the injection to be approved and that it does, indeed, do all and more toward giving you the relief you need.

    Love and hugs! ~Buffy

    Like

    • jholland · March 10

      Thank you so much, Buffy! Crossing fingers that the injection will work as well for me as it has for my Dad. He’s done really well, and I can only hope that our shared genetics mean that I might, too. =)

      Liked by 1 person

  3. Servetus · March 10

    I hope the diagnosis at least has given you some relief from uncertainty. Updating the post-it note on the steering wheel here, and pondering the difficulty of adopting a seaweed diet where you live. Do you like kombucha?

    Many hugs.

    Like

    • jholland · March 10

      LOL… well, I wouldn’t say I was adopting a seaweed diet… just going to order some online and rehydrate it in some homemade broth now and then, probably. As for kombucha… it’s a little bit funky. I bought every flavor and am working my way through trying to determine which ones I can live with. 2 out of 4 so far I rated “Not good” but the two that were more fruity were tolerable. Hoping it’s an acquired taste. =)

      Liked by 2 people

      • linnetmoss · March 12

        Does it matter what kind of seaweed? I have found that I like nori, the stuff they use in sushi, more than kombucha. Hang in there, J. I admire your positive attitude! I have a cousin who has lived a full life with MS for many years… expecting/hoping the same for you.

        Like

        • jholland · March 13

          I love sushi (and I can have it) but what I have right now is dulse flakes, which are little red flakes and they taste fine. They add a salty but not fishy kick when sprinkled on a salad or in a stir-fry. I also ordered the kelp (kombu, I think it’s called”) which I haven’t tried yet. I will hang in there!

          Liked by 1 person

        • linnetmoss · March 14

          Salty but not fishy is good! I have tried the kombu, mostly when cooking beans, and it seemed fine, not too strong a flavor.

          Liked by 1 person

  4. Guylty · March 10

    I am so glad to hear that you have finally got a diagnosis – and doctors who have ideas how to fight the symptoms of MS, make you feel comfortable, and make you live with the disease. The affection and care from your family are probably the most effective antidote of all, and if the signs of our affection for you have cheered you up, then hopefully that will also contribute to stabilising your condition so that you can continue to work and carry on.
    PS: I received your e-mail and I should’ve replied except I was away for a week. Tell your lovely ladies in the clinic hi and thank you from me, for receiving the shipment and passing it on to you.
    PPS: Dr Armitage looks great in turquoise scrubs!

    Liked by 1 person

    • jholland · March 10

      Yeah, that Dr. Armitage is just the kind of medicine I need. No worries about the e-mail- I’m not exactly quick on replies, myself! I am glad to know the diagnosis, and I’m hoping that Dr. Hottie is wrong. As a veterinarian, sometimes I like to be wrong, when a patient of mine does better than I prepared the client for. I want to be RRMS, damn it! And certainly my symptoms have improved so drastically over the past several days that I’m hopeful that the Secondary Progressive categorization was worst case scenario. And thank you once again for the wonderful pick-me-up. It couldn’t have come at a better time. =)

      Like

  5. Servetus · March 10

    I feel like seaweed is always better when mixed with something else. re: kombucha, it does come to be an acquired taste (if you like sour beers or dry white wines, it might be easier for you to acclimate). I like it but it’s hard on the digestion, I find.

    Like

    • jholland · March 13

      Yeah, I’m coming around to the flavor now that I’ve been having it daily for about a week. I haven’t had any problems with digestion, but then I drink the minimum amount recommended. LOL

      Like

      • Servetus · March 13

        If you drink a lot of it, just like a poorly filtered or lagered beer, it can give you the runs, especially at first. So stick with the minimum 🙂

        Liked by 1 person

  6. zan · March 11

    Dear J, I’m just reading about all that’s been going on with you. Many thoughts/vibes/prayers/mystical incantations/tribal dances etc are all headed your way. And a bunch of hugs, too. (You can never have too many hugs. 🙂 ) Here’s to quick insurance approval and continued good progress.

    Like

    • jholland · March 13

      Thank you so much, Zan. It’s been a bit of a rough ride the past several weeks, but I remain hopeful. ((( Hugs ))) back!

      Liked by 1 person

  7. Esther · March 11

    Well, this sucks…. but at least there is a clear diagnosis, that’s something. I hope good treatment can help you feel alright! I’m thinking of you! (((Hugs)))

    Like

    • jholland · March 13

      Yes, and in some ways I’m fortunate because a lot of people take months or even years before getting down to the diagnosis. My particular symptoms made it clear early on that it was something going on in my brain, thus straight to the MRI. If I’d had just the tingling in my hand or just my foot, I likely would have been told it could be a pinched nerve and referred for physical therapy for a few months, etc. It’s almost unheard of to go from zero to definitive diagnosis in 2-3 weeks. So I’ll start the injection a lot sooner than the average person. =)

      Liked by 1 person

      • Esther · March 14

        I know of people where diagnosis took much longer.
        Hope the injection quickly shows positive effects!

        Liked by 1 person

  8. SueBC · March 11

    I’m glad you got a quick diagnosis. I hope the injection approval comes just as quickly.

    Like

    • SueBC · March 11

      Sorry… Hit send too soon… Focus on taking care of yourself, as much as you can with a young family. Sending good thoughts your way.

      Like

      • jholland · March 13

        Thanks, SueBC. I am probably taking better care of myself than I have in years, diet-wise. And the kids are loving all these healthy smoothies, too. It’s kind of fun. =)

        Liked by 1 person

  9. zeesmuse · March 11

    It seems wrong to like this post, but you sound like right now you’re in a better place than last week. I’ll keep praying and yes, Dr. Track is the best doctor around. *coughcoughcough*

    Like

    • jholland · March 13

      Oh, for sure I’m in a far better place this week, and thank you so much for your prayers. Between Dr. “Track” and Dr. Hottie, I’m in good hands. *snickers*

      Liked by 1 person

  10. Hariclea · March 13

    Glad you are making progress towards getting the right treatment and i’l cross my fingers the insurance company approves it soon! Also hoping the revised diagnosis will be a better one. Just glad you are getting all the best care in the world. And good news you are feeling better and were able to do normal stuff. I am sure all loved ones are there for you and you are in all my prayers! Thinking of you often and sending you all the best vibes in the world! xx

    Like

    • jholland · March 13

      Thanks, Hari! Yes, I’m really fortunate in my medical care, and in my family support. I’ve been reading about dietary changes that have made a real difference to a lot of MS patients. Mostly anecdotal stuff but enough so that there are currently NIH-funded studies running. The studies are years-long, though, so I’m going to adopt the recommendations now and hope they pan out. Can’t hurt to eat a ton of fruits/veggies and cut out processed foods. In fact, Hubby is using his spring break to haul in railroad ties and garden-ready soil to create several raised garden beds. We’re going to start growing a lot of our own produce. I think he’s happy to have a project he can do that might help! =)

      Liked by 1 person

      • Hariclea · March 14

        oh that sounds really good and good food can only help with good health! and there are enough foodies in our groups to provide you with interesting recipes for entire books to try out :-)) I’ve always missed the veg from the garden we used to haven when i grew up 🙂 I hope this does not mean cutting out cheese or is that a no-no as well?

        Like

        • jholland · March 27

          Well, it is recommended in this book I’m following that I cut out dairy entirely, so I’ve cut back. But there is just no way for me to cut out cheese entirely, so I’m cheating on occasion there. What good is a healthy Greek salad without the feta? LOL

          Liked by 1 person

  11. squirrel.0072 · March 14

    Heureuse de recevoir de vos nouvelles.
    Si je peux vous aider, voilà une compilation de conseils diététiques, qui semblent faire consensus.
    Recommandations générales:
    no – Manger moins
    – Suivre un régime faible en acides gras saturés provenant:
    * du règne animal porc, boeuf, agneau,
    * des produits laitiers: fromage, beurre, crème fraîche ..ou
    * du règne végétal: l’huile de palme.)
    – éviter les sucres concentrés, les additifs, les conservateurs et les métaux lourds,
    – privilégié la cuisine maison avec des produits bruts, frais, non transformés.

    yes – Privilégier les acides gras polyinsaturés, surtout les oméga-3 des poissons (mais les poissons en fin de lchaine alimentaire sont riches en métaux lourds!)
    – Augmenter l’apport en vitamine D, en iode /venez passer vos vacances en bord de mer!/
    – Manger davantage d’aliments du règne végétal, ( protéines végétales, et les produits céréaliers ).
    Les algues, les probiotiques, les ferments: mode ou réalité??? Il y de l’iode. L’immunité et le moral auraient à voir avec les intestins, alors???
    J’ajouterai le pe-tsaï, chou chinois ou chou de Pékin pour le calcium, les antioxydants, les vitamines et les minéraux.
    Le thé et le fer ne font pas bon ménage, alors?

    Like

    • jholland · March 27

      Hi Squirrel- I have adopted a lot of those recommendations- completely cut out processed foods, gone gluten-free, eating as much organic fruits and vegetables as I can stand (supposed to eat 9 cups per day- 3 of leafy greens and 6 of others), and yes, algae and fermented kombucha. Supposed to eat seafood at least twice per week, but so far I’ve only managed that once per week! I’ve cut out most of the dairy as well, though I can’t live without feta cheese after my time in Greece, so I cheat there! Our new garden is sprouting so plenty of fresh healthy stuff to be had soon! And it was back to the lab last week to have Vit D levels tested- supposed to aim for a range that is twice the “normal” range on labs and adjust supplements accordingly. I will say that I feel great with all this healthy eating over the past several weeks!

      Liked by 1 person

      • squirrel.0072 · March 28

        🙂 Joke: Good luck with the famous cod-liver oil laddle! “Let the sunshine in”

        Like

  12. Babette · March 22

    I’ve been meaning to reply to your post, but was away….. I’m glad that you have a definitive diagnosis and can move forward. Not knowing and waiting for test results is the worst thing. You are in good hands, medically speaking, and certainly have a loving and supportive family. Sending you hugs and best wishes of support!

    Like

    • jholland · March 27

      Thank you so much, Babette. I’m glad to have the uncertainty out of the way, for sure. And I’m doing really well at the moment!

      Like

  13. judiang · March 23

    Just read what’s going on. I’m glad you were able to get a diagnosis. Hope the injections continue to improve your condition. Sending you good vibes.

    Like

    • jholland · March 27

      Thank you judiang! I just started them middle of last week, and in the past couple of weeks I’ve really improved, so hopefully the injections will agree with me and keep it that way. To my understanding, they don’t treat symptoms, just work as a preventative measure to moderate future relapses. =)

      Like

  14. Glady (@GladyRoland) · March 28

    I’m so glad you are feeling better and I hope the situation will improve with those injections! Much love to you!

    Like

    • jholland · March 28

      Thank you, Glady! Keeping fingers crossed! ((Hugs))

      Like

  15. Gratiana Lovelace · March 29

    Dear Jenn, I’m so sorry for your MS diagnosis. I will keep you in my thoughts and prayers–and sending healing thoughts your way. I hope the myelin injections work for you–and that the insurance comes through to pay for them. Hugs & Love! Grati ;->

    Like

  16. Gratiana Lovelace · 27 Days Ago

    Hi Jenn, Just checking in with you again to see how you’re doing. Keeping you in my thoughts and prayers! Hugs & Love! Grati ;->

    Liked by 1 person

    • jholland · 26 Days Ago

      Hi Grati, and thanks for checking in! I’m doing well, living with a bit of a numb right leg and foot, which is completely manageable and doesn’t interfere with daily life and work. I’ve been keeping busy and am on a hiatus from blogging, waiting to see if the impetus returns, but still following all the news about RA with interest! ((hugs right back))- J

      Liked by 2 people

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s