My MS Hug
(blurry but recent!)
A few days before Thanksgiving, I woke up and my right side abdomen was numb. Weird. But, I thought maybe it was a reaction to an antibiotic I had just started taking. I switched antibiotics but the numbess continued and then came an unbearable stabbing pain in that area. The numbness eventually began to spread down my right leg and went from front center line to my spine in the back, never crossing to the left side. The stabbing pain turned into a very tight squished feeling in abdomen and even more in that hip. My right side was weakening and my walking was becoming wonky. Four weeks, five doctors, one ultrasound, one hidascan and eight (!) MRI’s later, I was diagnosed with MS.
The thing is, four days before going numb, we were vacationing in Seattle hiking around, catching ferries, walking from hotel to the Space Needle…I was FINE! Whew. I am still trying to wrap my brain around all this.
But what I want you to know is that I am doing really well. I am on some big gun meds right now, trying to get me to a remission phase. I hear that (maintanance) meds for MS are really good these days and my fate is not sealed by this. Some strength has come back since beginning meds, although I still have a lot of numbness and tingling. The tingling is like an electrical shock feeling and sometimes my feet feel like they are in buckets of ice even though they are perfectly warm to the touch! Isn’t that strange? My brain reads it wrong right now I guess. I am hoping for lots more improvement and I will see a top neurologist next week to see what he suggests to manage this situation.
The physical part has been challenging (and thank goodness for Rick and some of the rest of my family!) but the emotional part might be what takes the longest to adjust to. It is so odd to be fine one minute and not the next. And to not know what is coming. There are different kinds of MS, with the remission kind being the most common and somewhat easier to live with, but we won’t know what we are dealing with for a while.
For some reason, the tears sometimes come right before falling asleep and also right when I wake up in the morning. But honestly, during the day, I am mostly fine and even happy. By the time the diagnoses came, I thought I might have something terminal so when the doctor said MS, there was some relief. I have a friend who lives with MS and she does reeeally well and she and some others have been very encouraging to me. I worry about the unknowns though and would kind of like to skip ahead a few months just to know what is coming. Our house is not great for this so we may be looking at a move. Homeschooling is a lot of stress and time and will I continue to be up for all that? What extra expenses are we looking at? Will I feel fine most of the time or will symptoms linger? Just lots that we don’t know yet, and that is hard for a girl who likes to plan ahead some.
In some ways, this fits though. Although I think the bottom line is that I have never had any signs of MS, hindsight does say that I might have. I have fallen twice (big falls) in the past couple years (I am 40). Once at a movie theatre and once at a large store. Like I FLEW to the ground, my purse flying several feet ahead of me. And get this, the guy I was walking with (store clerk) stood there in shock as I was sprawled flat on the floor (!) and when he recovered a bit he helped me up and then he said oh you know, I fall ALL THE TIME!! And just heehhahaahheehaaa huge roll on the floor and laugh out loud to that! Of course people don’t just fall flat on the floor all the time. But I don’t know, I was wearing cute shoes and I was clipping along and I just thought I slipped or something. But looking back…who does that? So yeah. Plus heat. I can’t tolerate any summer heat. Like I hate summer. Except this past summer I thought I was doing great because I spent a ton of time in the pool with my kids and my mom. But that is just it, I spent it IN the pool. I could not bear to be out of the water. So maybe these, and a couple other things, were slight indicators, but I certainly didn’t have a clue. The MRI’s show that it has been developing for a while though, it didn’t actually occur overnight, even though that is how it feels.
For those that don’t know, it means that I have areas of nerves in my spine and my brain that are stripped or stripping of myelin. The myelin is like an insulation that protects the nerves and when they are bare, they sort of fritz out. The area affected depends on where those spots are. Right now I have a large area on my spine that is stripped and one particular spot on my brain that my doctor thinks is throwing me off. The two aren’t communicating well. This can change. While it can affect all areas, right now I am affected on my right side, abdomen and leg. MS is a permanent condition but there are times when it should be very well controlled. Other times I can have a “flair” which will cause varying symptoms like the ones I am currently having but in many people now, those times are few and far between once they are on the right medicines.
The kids are doing well and getting to spend some extra time with their grandparents. Rick.is.my.lifesaver. I don’t even know if I have words. He takes perfect care of me and although my instinct is to apologize to him for all this mess, he doesn’t seem to want any apologies. I don’t know how it is that he loves me like he does, but he is my perfection and he is more than I deserve. We celebrated our 19th wedding anniversary yesterday and I know how lucky I am to have my hot man.
So the hug? Well it turns out that constant tight squishing feeling around the middle is known as the MS hug. Those who know me personally know that I am not a hugger! The joke is on me. 🙂
Seriously though, this is a very recent diagnosis and I am sure I have a long way to go with it but it has surprised me how comfortable I am with it. In some ways I feel softer around my edges. I have better perspective. I feel like I relate better to people, those close to me and those I just pass by. I see better that we are all part of the same big picture. It is just more obvious now that the small stuff isn’t worth the time it often takes from me. One of the kids was going on about something recently and I felt myself zoning out and just saying I have bigger fish to fry, you are going to have to work some things out on your own. And part of me thinks I should fret about that, but more of me thinks this is ok and even good. We can all stretch a little here. And we are going to be ok.
I have always always been kind of a quirky girl and frankly have worked to hide much of that (probably didn’t succeed). There is some freedom in this for me and at least so far, I am finding some relief in it.
Finally, as a people watcher kind of girl, I know that everyone has to deal with things in their own way. My way has always been open and out there. If you see me, know that I am not fragile, emotionally or physically. You can hug me (it is kind of becoming my thing), you can ask me, you can acknowledge my new normal. It’s all good. And there is nothing to feel bad about. Maybe some harder times are coming, who can know that. Right now we are good and happy.
Mom
Wow! I’m so proud of you, my dear daughter! Good job and I love you.
Shari Ulrich
Wow, Tiff. I’m sorry you’ve been feeling bad and I’m sorry you’ve been given a life changing curveball. I noticed you haven’t been updating the blog as frequently, I assumed you’ve been busy; and you have been. I like your attitude and the fact that you’ve been doing some research and are ready to take this thing on. I will pray that your meds work we’ll for you and that your symptoms will be easily controlled. I have big time back problems and wonder about my future and my ability to care for grandchildren (who I hope to have in the next few years). My husband feels like I’m already an old granny as our lifestyle has been limited due to my pain level. I find myself feeling guilty and ashamed which is ridiculous! I’m only 51!! Interestingly enough, we think my problems relate to adopting Abby. I was 42 and suddenly had a baby who had to be carried 24/7 for the first 18 months. I wish you all the best in this new year, I’m sure you’ll make all the necessary decisions to allow you to maximize your energy and health. God bless you & yours!
Andrea
Oh dear Tiffany,
I am quite shocked… but I truly pray for you that you will find your way to handle the situation.
Our cousin is also diagnosed with MS at the age of 23. She becomes a little bit better, because now she knows what to deal with and she received the treatment she needs…
I never forget the kindness you gave to me…
and I am glad that you are in a great family…
Warmest regards from Germany
Andrea
Taryn
I love you a bushel and a peck and a hug around your scrawny little neck, neck, neck. Perfect post-well done and I do love you so much.
xoxo’s
Taryn
Aunt Kim
Hi Tiffany you are an inspiration to me!! Your mom said you were researching a vegan diet your uncle and I have been vegetarian – vegan for awhile now if you want any resource info let me know its a learning curve but very healthy!! Love all the pictures beautiful family. Love aunt Kim
Virginia
I’m so, so sorry you’re having to deal with this but it sounds like you’ve got the right attitude and a great support system with your sweet family and friends. Praying that the medications to a great job of keeping it controlled. Please keep us updated. ((Hugs))
Gin
Martie
Sweet Tiffany, I gasped right out loud at your announcement. But I must say that as I read, I was more and more impressed with everything you said. You totally inspire me. And you still are able to make me laugh even when you’ve had tough stuff going on. Regardless of your feelings about such things, here is the HUGEST HUG. You are amazing!!! I hope you and your family are able to find your “new normal” and peace along the way. Much love, Martie
Wendy O
So sorry Tiffany that you and your family will have to deal with so many changes ahead. I am sure finding a place of acceptance will take time, but know that you can and will still have a very fulfilling life. Wishing you all the best! Sending you peace and happiness,
Wendy
Jennifer
Tiffany, that was an inspirational blog, and you are a very strong lady. I know you will be able to handle this situation just like everything else in your life. I have two friends living with MS, so it’s possible. One thing I will throw out there is that one of them had a flu shot 10 years ago, because his sister in law the nurse said he should have one. It progressed his MS very quickly after that, so please be careful about flu shots and be well informed. Secondly, you made a couple of comments about your house and homeschooling. I know how much you love both of them, but the right things will come along for you and your family. I know the experience the kids had in their past school, but if you want to sit down and talk about Alex’s charter school we can. I am still in love with it, and it was rated 39th in the state for schools. They push Alex to be the very best student that she can be, and I know your peeps need that too. It is a lottery, and they just had it in December but there is always next year. Just make sure that you take care of yourself too. Your family is strong, and they will help you through this process. Give me a call or shoot me an email if you want to talk. I am always here to listen. Jennifer
Holly
I am so glad I popped in to check on you. you were on my heart. You sure have a lot to work through right now but it is do-able! I mean it! I don’t know what your religious beliefs are, you have always been private about that sort of thing but I just a few days ago read a quote that I hope you will not be offended by, “Faith makes things possible, not easy.” Perhaps your faith will be in something different than mine but I hope you will appreciate the quote. Not easy but possible. And you are so blessed with your hubby and your three beautiful treasures! Sometimes the deepest valleys lead on to the most breathtaking mountaintops. Hugs, Holly (who is not a hugger either but am learning!)
Cindy C
Sorry to hear this but had to share, my daughter’s first grade teacher was diagnosed w/ MS about 18 mos ago, she’s teaching still and looks fantastic! Her drs are at UCSF and you wouldn’t even know she had this now. Prayers and hugs for dealing w/ it, thanks for sharing.
Love your holiday pictures, such a warm and loving home. Thanks again for your openness and keep us posted!
New Year Blessings to you and your family!
Krista
Oh… Tiffany!!
I’m so sorry your having to deal with this. Your in my thoughts and prayers. I too have a good friend that was diagnosed a few years ago. She is doing great, working as a nurse and has just finished her Nurse Practioners Degree!!!
Big Hugs!!
Krista
Linda Lee
Tiffany, for years I have read your blog because I really appreciate your positive, can-do attitude about everything. It looks like you are approaching this new challenge with the same attitude. I too have a friend who has had MS for years (I know, people come out of the woodwork with their experiences, don’t they?), and for many of those years I didn’t even know it. She will occasionally mention having her meds changed, but other than that, I wouldn’t even know she had it.
The best to you as you take on this new challenge.
Rose
Wow Tiffany, I’m so sorry to hear this. But I’m so impressed by your attitude! You are the 2nd Parker person I know diagnosed with MS in the last month. I’ve been thinking of you, hoping to get together and happened upon your blog. I’m shocked….and after reading your symptoms, sort of relieved it’s not something so much worse. But still scary. My thoughts are with you. HUGS!
Stephanie
Read my last comment on giving you a hug and I’ll refrain from hugging…since…you don’t like them, which is a big relief to me, because I’m not a hugger either. 🙂 definitely prayers though! 🙂
Adoptive mom of 2
Amy told me all about your story at CNY. I am so sorry I have been out of touch. I do have a dear friend whose husband has been battling MS for 4 years now. He is back to working full time in sales and doing well on his new meds.
I’ll put him in touch with you or put his wife in touch with you once I dig up your email addy. Let me know if that is okay.
Love you,
M