Carnival of MS Bloggers #163

Welcome to the Carnival of MS Bloggers, a monthly compendium of thoughts and experiences shared by those living with multiple sclerosis.

The Spiritual Side of Multiple Sclerosis

by Bill Walker at MS and Beyond

When I think about myself as an individual in this lifetime experience, I always have to separate my reality, into two unique pieces which quite simply is a body and a soul. And strangely enough this is of great comfort to me when I start to think about my Multiple Sclerosis diagnosis. I understand that MS is a physical (body) ailment that has little to do with the soul part of my incarnation beyond being a lesson on learning compassion and love. I’m sure that sounds like something that should be significant to my spiritual growth overall, which it is, but I take great comfort in knowing that on the day I cease to exist in the physical plane is also the day that MS ceases to be a part of my continued existence, simply stated if I learn my lessons well enough, I can move beyond Multiple Sclerosis and never have deal with it again as far as I’m concerned.

Have you ever heard someone with MS or Parkinson’s or Cancer or any devastating disease say that it was the best thing that ever happened to them before? I can assure you that you didn’t hear it from me but I have come to understand what it is they are referring to when they make such a statement. After you can move yourself beyond the, why me phase, you start to see the world in a completely different manner. It’s like coming out of a deep all encompassing fog where you can see the world with eyes that no longer tune out a deeper compassion for the human experience, in short, you learn to love on a much more profound level then you ever thought you could. It makes almost everything that most people worry about in life seem incredibly insignificant from that point on. And if it took my getting Multiple Sclerosis to learn that, then I have to consider the possibility, that though I’m not really happy that’s what it took, perhaps it was worth the experience to achieve that overwhelming spiritual growth that is occurring within me.

And then it all starts to hit you just how petty most of what our race seems to think is important in this world. It’s not about amassing great wealth, or having the biggest house, or the power to influence other peoples lives just because you can. It’s ultimately about compassion, truth, and the willingness to help everyone else around you to find peace in their own existence.

And most of all, it’s about finding your own personal faith in who and what you are, and sharing that with everyone else!

I’m dedicating this blog entry to a person that I didn’t know all that well, but I wish I had. When I met her she was in the advance stages of Progressive MS and little did I know at the time that this would be almost prophetic since it was twenty years before my own MS diagnosis. She was one of the kindest and gentlest spirits that I have ever met never once complaining about the hardships of her own life which were extensive by any normal standards that most of us experience. However, she left behind her spiritual compassion that will be shared and passed on by each of her four sons, John, Steve, Bill, and Dave. She brought the light of God into this world and it is only right that this light be shared by all!

Camille Marie Kelly

Born: 11/27/1932

Passed: 1/10/1995

This concludes the 163rd edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on January 1, 2015. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, December 30, 2014.

Comments for this post.

Carnival of MS Bloggers #162

Welcome to the Carnival of MS Bloggers, a monthly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Suffering Disappears, Love Remains

by Meagan at Multiple Sclerosis, Motherhood, and other Traumatic Experiences

Do you ever have days when you feel like it has all become too overwhelming?

My grandparents, both in uniform during WWII

My grandparents were a living example of heroism and true love despite devastating life circumstances. Have you seen those movies with an unbelievable love story, overcoming all odds?

This is a true story.

When I feel weak, I think of them. When I feel overwhelmed with my lot in life, I think of them. When I want to give up, cursing the universe for the bad hand I was dealt, I think of them.

My grandmother with Bob Hope at the USO, 1940s, Hollywood, CA

Their story began on a Southern California beach in the 1940s, just after World War II began. It was love at first sight, according to my grandparents. My grandfather describes my grandmother as "the most beautiful girl he had ever seen." From that moment on, they hung onto each other through it all, never giving up on this commitment. They both joined the military during the war, my grandmother serving as a WAC, my grandfather in the Army.

Soon after, they married and started a large family, with 3 girls and 4 boys. My mother was the oldest girl, and took on a great deal of responsibility for her younger siblings.

This beautiful love story began to take a turn.

My grandparents on their wedding day, 1945

That beautiful image, that perfect wedding day....the meeting on the beach, the love that brought these two together. This is the foundation of a relationship that would truly stand the test of time, and the test of multiple sclerosis.

Sometimes, difficulties bring out the best in people. Sometimes it takes struggle to find out who we really are, and what we are truly capable of. My grandparents were about to experience that struggle first hand.

My grandmother began to experience new neurological symptoms, new emotional instability, and eventually full blown seizures. The health history of my grandmother is somewhat unclear, because this was occurring in the 1950s, before MRI, before a solid understanding of multiple sclerosis. After years of symptoms and hospitalizations, my grandmother was eventually diagnosed with MS. At this time, the disease was poorly understood, and no treatments whatsoever were available.

My grandmother, mother, and aunt/uncles: 1960s

Looking back, I believe that my grandmother may have had a very progressive form of MS, and combined with almost daily seizures, this led to a rapid decline. A wheelchair made it's appearance when my grandmother was in her 40s, and eventually she needed nursing care and was bedridden. When faced with the option to move my grandmother to a nursing home, my grandfather refused.

Here is the beautiful part of the story.

My grandmother with her caregiver

My grandfather decorated a beautiful, sunny bedroom for his wife. He hired a caregiver who was a wonderful part of the family, present every day to care for the seven children and my grandmother while he worked. He must have been physically and mentally exhausted. He worked full time, served as husband, father of seven, caregiver, and breadwinner.

The family continued to grow, with myself and many other grandchildren making an appearance. Family Christmases, weddings, and other celebrations always included my grandmother. The love between my grandparents could be felt strongly if you were near them, and for many years, the love grew and the care continued. Eventually, however, my grandmother lost her battle with MS.

My grandfather lived on for another 15 years, gardening, visiting with many grandchildren, and enjoying holidays with the family. He would always say that he was going to see his wife again someday. He was waiting for that day.

My grandparents...1980s

The strength of the human spirit is incredible, isn't it? The ability of a human being to sustain the daily grind, work, children, marriage, illness, and even death. The depth of our strength cannot truly be known until we face challenges like MS. We must undergo many changes in life, adapt, overcome, and go on. 

On their grave is the quote "Suffering Disappears, Love Remains."

When you think about it, isn't that the truth? Our suffering isn't permanent. It isn't forever. But do you know what is? Love.

My grandmother with Louis Armstrong, 1950s

With my own diagnosis, I have seen my grandparent's story as a source of inspiration. I have a large family of my own, with six children depending on my husband and myself. I look at my grandparent's story and realize that anything is possible. There is no "I can't." I can and I will. 

When you feel that life has handed you a lousy deal, keep in mind: You are strong and capable. Your strength comes from a place deep within, and you won't believe how strong you can be when you have to. Lean on those around you when you need to.

MS certainly presents a great challenge to each of us, but I am so grateful for the many new treatments available, and the ongoing research. We live in a time of hope and promise, as far as MS goes. We are fortunate.

Despite everything we endure in life, it is still "A Wonderful World," isn't it?

Please Join Me at iConquerMS™

by Lisa Emrich at Brass and Ivory

This concludes the 162nd edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on December 4, 2014. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, December 2, 2014.

Comments for this post.

Carnival of MS Bloggers #161

Welcome to the Carnival of MS Bloggers, a monthly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Creating a World of My Own

by Melissa L. Cook of MSsymptoms.me

Papers stacked high, email flags a mile long, a budget to reconstruct on my desk, a teacher in for an evaluation, and it was already 2:30 pm - I would be home late again tonight. Double-timing as I navigated the halls of the school touching base with each of the teachers to see if they needed anything - support, supplies, a travel request. On to instruct an after school teacher inservice and then I would hightail it to a conference call on a new state report. I loved my job. My career as a school district administrator was, simply put, awesome. Little did I know my driven world would abruptly skid to a crawl, robbing me of my oomph and leaving me alone with no more tasks to complete than to peel myself out of bed, slip on clothes and cook dinner - tasks proving difficult at best on some days. Multiple sclerosis had taken an ugly turn for me for a period in my life.

Initially I was too ill to be aware of my devastating launch into isolation. Loneliness was a few months off. Fearing the worst was about to befall me, I planned my final arrangements and put my affairs in order. Then I waited. Nothing. Waited some more. The shock of being alone hit me like a ton of bricks. Overload at the office made it difficult to sustain meaningful relationships in the after-hours clearly evident at this point in my life. I was alone now during the day; my life would never be the same.

A few years later, I would write a blog post called, “Disability is Not a Bundle of Sick Days” with the conclusion, “It is as if I have spent the past 31 months out on sick days. Disability isn’t a sick day, it is life. It is about time I realized it and start living again.” I hid in my home for two and a half years. I was sick. I worried the people of my small town would question why I wasn’t working if I could mosey into the post office or store. Then one day I ventured out with a camera in hand to photograph the fall colors and was welcomed with open arms by my neighbors and friends whom had wondered what happened to me.

Johannes Vermeer, A Lady Writing

Creating a world of my own came from the freedom gained in throwing out the “sick day” mentality. Multiple sclerosis is a day-by-day illness meaning there are times I feel normal and can do things I used to. The first order of business was making new friends. Second, purpose was reintroduced into my life when I began blogging about my MS story and the latest research on www.MSsymptoms.me. Third, my desire to help others led me to become a first responder. People with disabilities can be assets to the EMS. Then, I became a board member for the local domestic violence and rape crisis center, putting my administrative training and education to use. Now I am polishing up a children’s story I have had on my mind for years and have a collection of short stories on living in Alaska’s bush country to revise.

Multiple sclerosis still hangs around my doorstep making an appearance periodically. However, I balance my new world in a way I never could with the demands of being employed. Resting as I need and remembering “all things in moderation” allows me to live an awe-inspiring life without the career I once loved.

The old saying, “When one door closes, another one opens” has been so true for me. My career goal of becoming a superintendent of schools with a Ph.D. was not realized. However, my dream of writing is taking shape. In addition, I find time to play with my grandchildren, quilt, bead, take photographs, and I want to learn how to paint with watercolors. Creating my own world becomes more exciting by the month. Yes, I still spend most of my days alone but I am not lonely; I am happy again. And, at the end of the day my best friend comes home to spend the evenings and weekends with me. I love you, Elgin! Thank-you for keeping me going.


This concludes the 161st edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on December 4, 2014. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, December 2, 2014.

Comments for this post.

Carnival of MS Bloggers #160

Welcome to the Carnival of MS Bloggers, a monthly compendium of thoughts and experiences shared by those living with multiple sclerosis.

I Hate Good Enough

by Lisa Emrich

Growing up, I learned several things: take care and pride in the things that you do, pay attention to details, follow established or recommended procedures, but be creative and flexible enough to find more efficient and effective ways of accomplishing tasks. In other words, don’t expect things to just happen on their own and be willing to improve upon past efforts.

Each of us have responsibilities and must take an active role in the world around us. No matter what that role is, it’s nice when everybody is able to do their best and helps to make things work well together. But sometimes, aiming for “your best” can lead to a distraction called perfectionism.

I have to admit that I’m somewhat of a perfectionist, in an all or nothing sort of way. It’s always been difficult for me to accept something as being satisfactory, good enough, or almost right. And when I do make a conscious decision to simply do what needs to be done, and no more, I find it challenging when others around me may want to go back to the planning stages and do the work over again. Argh, once I’ve let something go, physically and emotionally, I don’t want to revisit it.

But one thing which I’ve had a really hard time learning to accept is the concept of good enough. When living with chronic disease, sometimes you don’t have the luxury of spending tons of energy perfecting every little detail. Sometimes you just have to simply ensure that things are okay, safe, or clean.

In my previous life, when I used to live alone, I was entirely responsible for everything that happened at home. If the floor needed to be vacuumed, I did it. I even moved light furniture so that I could run the vacuum wand along the floorboards to remove the cat-fur dust bunnies before they grew to adulthood. A bit of prevention helped to keep things from getting out of control.

If the dishes needed to be washed, I did them by hand and scrubbed every metal surface till it shined. If the cat became unsatisfied with the condition of his litter box, he was not shy about letting me know by doing his business on the floor of the bathroom. In that case, I needed to focus more on the prevention stage. Although I was swamped with graduate classes, working two library jobs, and performing in at least four ensembles, I was able to stay on top of routine household chores most of the time.

Now that there are three of us in the house, in addition to our three loving fur babies, and I do not need to do everything all on my own, it seems that nothing is quite as clean as it used to be. Items are often not where I left them and there’s always a pile of dishes to be cleaned.

Face it, I no longer live alone, nor do I have complete control over my surroundings which I’ve come to accept. But that’s not all, I also don’t live alone in more ways than one. My roommates now include multiple sclerosis and rheumatoid arthritis.

These roommates, MS and RA, are messy slobs. They don’t do their own laundry, nor do they sleep when I’m tired or get out of the way when I’m busy working. But these roommates are doing their darndest to teach me patience, to teach me how to accept “good enough” when it really is enough, and to learn how to appreciate imperfections. It makes me appreciate a freshly washed countertop, or a pile of clean laundry which I didn’t have to fold myself, all the more.

What types of things have you learned, or are learning, to accept after living with chronic illness for any period of time? Please share your stories in the comments section below.


This concludes the 160th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on November 6, 2014. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, November 4, 2014.

Comments for this post.

Carnival of MS Bloggers #159

Welcome to the Carnival of MS Bloggers, a monthly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Gut health

from MirandasMSBlog

Bacteria and Digestion

I quite often get asked about bloating. But did you know that you don’t have to have digestive symptoms to be suffering from ‘dysbiosis’ or wrong bacteria in the gut? It might be easy to think of this as something that’s just a minor inconvenience. However – gut problems are not just miserable & uncomfortable, they can also possibly play a role in auto-immune diseases like MS. In fact Hippocrates, the ‘Father of modern medicine’ is quoted as saying that ‘all disease begins in the gut’.

If the health of the gut breaks down, undigested food molecules can pass into the bloodstream. This is known as ‘leaky gut’. These undigested food molecules can be interpreted by the body as ‘bad guys’, and activate an immune reaction, causing a food intolerance. According to the theory of ‘molecular mimicry’, the confused immune system can then mistake other molecules, of the body’s own tissues, which are similar to these undigested food molecules, to also be ‘bad guys’ or pathogens, and launch an immune response to its own tissues, setting up an auto-immune disease.

So let’s take a look at this one aspect of gut health; bacteria, & how it affects us. The gut is basically a long tube, that travels from the mouth to the anus, with many shapes & sizes along the way, to accommodate the different stages of digestion! I’ve discussed constipation, diet and stool health, and the link between auto-immune disease and food intolerances before in this blog , but today I’m thinking about the tiny beings who live with us, lovingly help to keep us healthy but also depend on us too for their existence – Bacteria! bacteria


From the 1600s, and the invention of the first microscope, we have known about the existence of our internal bacteria, but up until quite recently, the focus for medicine has been more about the ‘war on germs’, and the eradication of infectious disease. We now understand that our gut is home to approximately 100 trillion micro-organisms. Did you know that: Bacterial cells outnumber our human cells to the extent that you could say that we are actually only 10% human, and 90% bacterial? Or that three pounds of your body weight is bacteria?

75% of our immune system is comprised of intestinal bacteria – and it also helps to regulate metabolism, digestion and the absorption of nutrients from food. The health of our gut depends on this intestinal ‘flora’ being in balance, and gut health is critical to overall health, with poor gut health implicated in a wide range of diseases including diabetes, obesity, rheumatoid arthritis and other auto-immune diseases, autism spectrum disorder and even depression. So what can disrupt the healthy bacteria in the gut? Top of the list is

• Antibiotics – life saving but also seriously disrupt the ‘biome’

Amongst others,

• Steroids and other medications like birth control and non- steroidal anti-inflammatories
• Diets high in refined carbohydrates, sugar and processed foods
• Diets low in ‘fermentable fibres’ – food for the good bacteria
• Chronic stress and Chronic infections

What can we do to help repopulate the gut with healthy bacteria? And what to do if suffering from ‘digestive discomfort!’?

• Eat plenty of fermentable fibers (sweet potato, Jerusalem artichoke, yams, dandelion greens, leeks, onion, garlic, or bananas) or take a pro-biotic ( good bacteria) capsule that includes Pre-biotics ( food for the good bacteria)
• Eat fermented foods like kefir, live yogurt,( be aware these 2 are dairy based), kombucha, sauerkraut, kim chi, – traditionally most societies do, but we’ve forgotten to!
• and/or take a high-quality, MULTI-STRAIN PRO-BIOTIC ( good bacteria) capsule daily – Bio-Kult is a good one, many others too
• Keep your diet as close to whole foods as possible
• Learn how to manage stress healthily

Taking regular probiotics helps to re-establish the strength of our gut and digestion, reducing the incidence of food intolerances, and allowing the body to free up more of its energy for healing painful conditions. It has also been found to help prevent recurrent infections like urine infections, and increase our ability to fight off the bad bacteria. The cheapest dairy-free way to get good bacteria into your diet is by making your own sauerkraut – It’s super easy to make – just get a head of organic cabbage, chop it up, punch it in a bowl, sprinkle salt on it, let it sit for half an hour, then put it in jars with a bit of salt water and let it sit on your kichen top for a week. There’s loads of instructions on the internet, but that’s about the size of it. Then use it like pickle. Til next time :)


This concludes the 159th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on October 2, 2014. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, September 20, 2014.

Comments for this post.

Carnival of MS Bloggers #158

Welcome to the Carnival of MS Bloggers, a monthly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Going Under the Knife

by Jennifer Digmann

When Cooper alluded in his last post that neither Dan nor I have been writing for our blog, I felt the need to explain what I’ve been doing.

It was three weeks ago Wednesday, July 30, that I had Gamma-Knife Radiosurgery.

This was the aggressive measure I needed to take in hopes it could control my Trigeminal Neuralgia (TN) and potentially open the doors for an equally aggressive treatment of my secondary-progressive Multiple Sclerosis.

For nearly four years I’ve battled TN, a wicked condition related to my MS. While only a small percentage of people with MS have TN, those who get this relentlessly painful irritation of the trigeminal nerve experience it in a very big way.

Almost every day and night for the past 48 months I’ve lived with the realities that I couldn’t expect to brush my teeth without pain, eat sweets without wincing, or sleep soundly without the being awakened by a violent sensation of electricity running through my right cheek and molars.

Through trials and error and countless calls to my neurologist at University of Michigan Hospital, we found medication – Tegretol and Tramadol – to somewhat control the nerve pain. It in no way was a long-term solution. We knew that, but another reality forced our hand to take a more urgent course of action: The TN medication was impacting my white blood cell count that it was preventing me from moving forward with a new MS medication, Rituximab.

After lots of research and doctor consultations, we concluded Gamma-Knife was my best bet.

Healthline.com explains that Gamma-Knife uses a targeted approach for delivery of radiation that destroys the trigeminal nerve. Also, the procedure is gaining in popularity because of its precision, effectiveness and is considered safer than other surgical treatments.

It was on July 9 that I underwent this treatment for my Trigeminal Neuralgia. To increase understanding of this advanced procedure that has the potential to help others dealing with conditions like TN, here is a behind-the-scenes look (some of the pictures are a little oogy!) into my Gamma-Knife procedure at MidMichigan Medical Center in Midland.

I was excitedly nervous as I rolled into the Gamma-Knife department.

Dr. Mark Jones and his awesome staff mounted a frame on my head to ensure it held still so they had the utmost precision when they used radiation to knock out my trigeminal nerve.

See? Mounted on my head … with screws! Yes, it was very painful, but Nurse Tammy held my hand to help me through it. Interesting to note: the metal screws did not leave any marks or scars.

Dan got to watch the entire procedure from the patient room in the medical center. Talk about reality TV!

It’s over! And hopefully so is my Trigeminal Neuralgia. Doctors warned me it could take between four to six weeks for results. Either way, I’m halfway there.

Are there any risks or side effects to Gamma-Knife? Potentially, but this photo from our fourth-row seats at the Train concert the night after the procedure says I didn’t have any :-)

Anyone who knows me knows that I’m kind of superstitious. I don’t like to talk about things before they happen for fear I may jinx an otherwise good outcome. I didn’t tell many people about the procedure before it happened for that exact reason. And even now, I don’t want to jinx a seemingly good result.

My pain is not completely gone and I still am taking Tegretol to manage it, but I am starting to feel like me again, sleeping through the night and brushing my teeth … nearly pain free.


This concludes the 158th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on September 4, 2014. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, September 2, 2014.

Comments for this post.

Carnival of MS Bloggers #156

Welcome to the Carnival of MS Bloggers, a monthly compendium of thoughts and experiences shared by those living with multiple sclerosis.

“Ouchies on the Inside” and other lies I tell my boys

by Jamia at MS is a Mother...

As mothers, I think that we are given the permission from the Universe to lie to our kids. And not really big lies, but little lies that help smooth out tough conversations.

Lies like, “This is going to hurt me more than it will hurt you” as we rip band-aids off of “boo-boos”. Little lies like, “We will be there before you know it…” knowing full well that the car ride to the amusement park is at least an hour away and there is a traffic jam.

So as I continue to embark on my motherhood journey, I too, have started telling these same little lies to smooth out difficult questions that my four year old is fond of asking me.

But one question that caught me off guard that I didn’t have a little lie to tell was this: “Mommy why do you get tired all the time and why do you walk funny sometimes?”

The dreaded questions that I was hoping not to have to answer for at least another year were already being asked! As a mother living with relapsing multiple sclerosis, I try very hard to mask those tougher days by announcing to the family that “Today, Mommy is moving like a robot “which means that I will be plodding around the house shifting my weight from side-to-side because my legs are agitated by the effects of Multiple Sclerosis leaving lesions on my spinal cord that at times will affect my gait and balance. Being “Mommy robot” sounds a bit more fun and allows us to keep the situation light. Sometime I do walk funny and my gait is off do to my MS, and becoming a “Mommy Robot” puts things into perspective.

But on this day I decided that not every MS manifestation I could have could be attributed to “Mommy Robot”. So as he waits for an answer, I get the perfect way to explain multiple sclerosis in a way that my two and four year old will understand.

So I casually say, “Jacks when you fall and hurt yourself, what do you say?” Jacks looks at me a bit annoyed because this is NOT the answer to his question. But being a good little boy he says, “Ouchy.”

“Good” I say. “And what if you fell and hurt yourself all over, what would you say then?”

Jacks cocks his head to one side and says very confidently, “Ouchies, Mommy. I would have “ouchies” all over the place!” He spreads his arms as far apart as he can.

So I take a breath and continue, “So guess what Jacks? Mommy has “ouchies” too.” I say matter-of –factly as he runs to me looking all over my arms and legs.

“Where mommy? Where are your ouchies? I don’t see them?” His big brown eyes filled with a bit of concern that almost makes me want to cry. But I keep going.

“Well Mommy has “ouchies on the inside” of my body where you and I can’t see them. That is why I get tired and walk funny sometimes. Mommy’s “ouchies on the inside” are “acting up.”

I stop talking and look at him. He sits silently and I figure that this was a bit too abstract and maybe I should have kept up with the “Mommy robot” story.

A little lie to smooth out a difficult conversation.

So then this is when I knew that as much as we mothers like to shield our children from uncertain truths, they show us that they can handle it. Jacks looks up at me and starts planting kisses all over my face and arms and legs. I start laughing at this sudden display of affection. And before I knew it my little Dylan has joined the party.

“Jacks, what are you guys doing? “ I say as I laugh because their kisses are tickling me. And the two of them have now knocked me over and we are all on the floor.

“Kissing all of your “ouchies” away, Mommy. Feel better now?” he asks as Dylan echoes my answer with some of his indiscernible toddler ramblings.

And at that moment I did feel better. Much better.

Telling the truth can also smooth out difficult conversations. Lesson learned. Another stamp in my passport: MOTHERHOOD.


This concludes the 156th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on July 3, 2014. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, July 1, 2014.

Comments for this post.

Carnival of MS Bloggers #155

Welcome to the Carnival of MS Bloggers, a monthly compendium of thoughts and experiences shared by those living with multiple sclerosis.

I'm Sorry...

by Lori at A Girl from MS and A Boy with MS

I'm sorry is a phrase that is either really easy to say or really hard to say. Sometimes it is used lightly, and sometimes it is used in some pretty intense situations. In marriage and really in life in general, the art of saying I'm sorry and what it means is actually really complex.

The first words Josh said to me after his diagnosis were "I'm Sorry." I am pretty sure I looked at Josh like he was an idiot. Why was he apologizing? Who says they are sorry for being sick? Are you kidding me? Being diagnosed with MS is something that is totally out of a person's control. Thinking about it now, I'm sorry is a little bit ironic. The things I really need Josh to say I'm sorry for are things like...

• Sorry for leaving the toilet seat up, and the fact that you fall in the toilet at least once a week as a result of this.
• Sorry for never unpacking my bags after business trips.
• Sorry for falling asleep with a glass of red wine in my hand and waking up startled resulting in me drenching you with red wine at 3 in the morning. (True Story... Don't you feel sorry for me?)
• Sorry for being grouchy when I wake up.
• Sorry for leaving my work stuff scattered on the table.
• Sorry for leaving empty glasses on the nightstand.

Even after reading this list, the things I want him to say he is sorry for are pretty pathetic. They are such minor things in life. AND truthfully, I might miss some of these things if he ever quit doing them. Although, he is free to stop doing these things just so I can test out what it is like. :)

On the MS front...

The eye washout has not completely gone away. Josh needs a steroid for his eyes to knock out the inflammation. Dr. Emily called in IV Infusion that can be done at home. Sounds dramatic, but it really isn't-just more of an inconvenience. Josh does an incredible amount of paperwork for his job. Really, I may never understand the amount of paperwork that he does. The IV is being done at home which works out really well for him so he doesn't have to stop work. Just another perk of having a home office. He has to do 3 consecutive days of the steroid. We are hoping to get them started today and finish on Saturday. I laughed and told him maybe he will have a cute little nurse come out to set it up:). It amazes me how far technology and medicine has come. The fact that he can do this from home and it not have an impact on his work is truly amazing.

Back to the "I'm Sorry's"...

Our wedding was FUN. Like, so fun I didn't want to leave. In fact, when we left the reception the first time, no one was outside to see us leave. We had to do a redo and tell the band to stop playing music so everyone would come outside to see us hop in the limo to start our happily ever after. Our friends and family celebrated (maybe celebrated a little too much:), but the main part of our wedding was our vows. When I took those vows, I signed up for MS. I signed on the dotted line when I signed our marriage certificate. Did I know it at the time? No. When you are young and in love, you feel invincible. All you can imagine are picket fences, babies, puppies, and rainbows. (At least as a girl I imagined this. I would be interested to see what Josh imagined:) Would I do it all again and sign up for MS? Yep. And guess what? I. AM. NOT. SORRY. And guess what else? I will NEVER be sorry.

Marathon

by Lyla at Dear Diary

I have been a runner in my lifetime. Some days I still feel like one, but most of the time I am happy to have the memorable experience of sustained motion. In 1999 a friend talked me into doing a "fun run" with her. She had just had her third child and wanted to get back in shape. She had been very involved in track during her college days and was really quite good, and fast.

I said yes, and over the next five years I ran in several events including four marathons and three triathlons. In 2004 I had a training accident which inadvertently led to an MRI revealing evidence of demyelinating disease. My next marathon had begun. It took another six years of head scratching before the diagnosis came. Oddly welcome. Nice to know the reason why, right?

Some questions though, do not have answers that feel satisfactory. And then there is the whole thing about not knowing what the future holds. All there really is to plant my feet on is what is in front of me right now. I am more than ok with that. Distance running is kind of the same. Being in the moment, being with myself is a big part of what I would try to do during a long run.

Now the distances involve navigating the space between my CNS and my body, the emotions that surface with the myriad neurological sensations and the time it takes me to employ good old-fashioned self care. Running shoes are optional.

Sneaky MS

by Cheri at I Tri not to Forget...

After transitioning to the autoimmune paleo and Wahls protocols, I definitely have had more good days than bad, as far as my MS fatigue. I have also learned to be more in tune with my energy levels, and therefore what I schedule for the week, making sure I rest if I need to, so I don't crash.

Having said all of that, there are days when I feel really good and I get caught up in the moment and push it too far. For example, last weekend, I started off my Saturday with a 1 hour vinyasa flow yoga class from yogaglo.com, then went for a walk with my daughter as she rode her scooter around our neighborhood and I ended up spending a couple hours in the afternoon out in my yard cleaning up the garden. I felt great and then it hit me, like somebody turned my switch to "off". I had just fixed dinner and then realized I was exhausted, and needed to lay down that minute. I basically ate dinner and went to bed and that was it for me. A couple months ago, I would have been down for the count the next day too, but I wasn't this time. I took it easy the next day, but I was still able to function, so I feel like I am making progress.

I believe that my body is slowly healing, and I am making peace with this new life, but sometimes this "MSness" can just sneak up on me...


This concludes the 155th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on June 5, 2014. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, June 3, 2014.

Comments for this post.

Photo Credit: Dawn - Pink Chick via Compfight cc

Carnival of MS Bloggers #154

Welcome to the Carnival of MS Bloggers, a monthly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Multiple Sclerosis: The First Two Years

by Valéria at It's complicated.

What I remember most about the first two years of MS is the hunger. I remember lying flat on my mattress, hungry. Close your eyes, go back to sleep.

I’m hungry.

I’m tired. No: I’m decimated. In this game of rock-paper-scissors, tired always wins out over hungry. I close my eyes. I drift in and out of sleep. Four hours pass. I wake up and think: I’m so hungry. Sleep. Eight hours. Still hungry. More sleep. Twelve hours. So fucking hungry. Knocked out again. Sixteen hours. Twenty hours. Sometimes twenty-four or more. Still hungry. Still fucking hungry.

Each time I awake I briefly contemplate getting up, foraging for something to eat. But the walk through the living room, past the bathroom, into the kitchen is long, and I am weak. The thought of opening the fridge or a cabinet, of microwaving something, is beyond me. And so I sleep.

I cry.

I remember crying because I was so fucking hungry but unable to get up and feed myself. I remember lying flat, limbs extended. Limp as a puppy, sobbing.

Sometimes I could make it to the fridge. I remember eating bread. Rolls. Holding onto the walls for support. Using my apartment as a walker.

I remember that when the disease hit it was nuclear. It obliterated me. I remember dreaming about 9/11 because my body identified with the collapse of those twin towers.

Whenever I was trying to do something difficult that required an extensive amount of concentration—like traverse an apartment, open a fridge, or take a piss—I would listen to my own breathing. To the silence.

I remember a stillness, a quietness that I’d almost never felt before and have almost never felt since (except on really bad days when, in class, I find myself again seeking out a wall to strategically hold onto in order to create the illusion that I’m not about to collapse–all of course while continuing to seamlessly deliver the day’s lecture on the present subjunctive, or vocabulary pertaining to zoo animals).

Crossing a street can be a victory. Taking a piss can be victory. I count my breaths. I listen.

I remember that for the longest time no human being touched me for any reason other than medical intervention. Nurses grasped my arms to insert needles or tie tourniquets. Doctors placed a firm hand on my back as I failed and failed and failed my Romberg’s test. Imaging techs gently guided my head into place for my 2 to 3 hour long MRI scans. The only touch I experienced was being strapped, tied, punctured, swabbed, infused, and physically manipulated. The worst is when they deliberately induce muscle spasms. I always beg for them not to deliberately induce muscle spasms. Please, please don’t do that thing. You know—that thing.

I remember having to do pulse steroids every single month for almost a year—along with thrice-weekly injections of Rebif—just to achieve something remotely like “remission.” The drugs demolished my immune system, leaving me with the blood cell counts of someone HIV+.

I remember being too weak to stand up after steroid infusions. Listen, I get 1,000mg of Solumedrol in 500ml of saline, — an assertion on my part which would inevitably cause the nurses to protest because “That’s more saline than normal. Why do you get so much saline?”

If you don’t give me 500ml of saline and infuse slowly over the course of 2 hours I will throw up.

“We usually infuse this in 30-40 minutes.”

Fine, then I’ll throw up.

“Fine. We’ll do it your way then.”

Fine.

They did it my way.

I remember leaving Brigham and Women’s at rush hour on a weekday and the #66 bus being jam-packed and me with a bandaged arm, glassy eyes, and an inability to stand and nobody—nobody—would offer me a seat. I remember sitting on the floor of the bus because I could not stand. I became stubborn in my willingness to sit down on floors, on the ground. Whenever I was out in public and became too fatigued to stand, I would simply sit down—wherever I was. Right there. Sit.

No, I don’t care who is looking. No, I don’t care what you think. I am sitting. Right now, right here, what I am doing is sitting, and I will get up when I am good and ready, and if you want to leave me here then go, fuck you, I don’t care.

I just need a minute. I just need an hour. A day. A few days. Just a week. A month. A couple of years, actually. Be right back.

Just need to get my bearings.

Just need this wall here. This is a good, solid wall. I love this wall. It’s not going anywhere, and I can lean on it. Holy shit: this wall is amazing. This wall is here for me. I love you, wall. Wall, I love you.

Whenever I would receive steroid infusions the only thing I could eat for days was Vietnamese food from Lês in Harvard Square. Pho chay, specifically.

I need limes from the grocery store. I need Vietnamese food and I need limes. I need, like, 40 limes. I need to get them before the steroid crash that’s coming in a few hours. Before it’s too late. I have to go, now, to the grocery store and buy like $40 worth of limes. Right now. Don’t bother me. I am on a mission. Don’t text me anymore because I need limes, OK? Goodbye. I need limes.

Steroids have a half-life of around 18-26 hours. If you’ve been infused with high doses for days in a row, your adrenal glands stop producing cortisol. Houston, this is a problem. I remember the crashes—the sweats, the muscle weakness, the inability to stand up (more so than usual), the bone pain.

This is why I need Vietnamese food and I need limes, and I need them now, before it’s too late.

I remember that I was left for dead for 2 years. Left for dead by everyone who was supposed to be there. Left for dead like an injured racehorse ready to be shot. I remember seriously weighing the hypothesis that perhaps I had already died and this was why I was being kept separate from the living. Why it seemed that no one could see me anymore. Why my ontological status seemed to have changed. I lay flat. Breathed. Waited. And sometimes, yes, I cried.

My Body Buddy

by Stacie at Keep Doing What You're Doing

I’m doing the best I can. I may not be doing EVERYTHING I can, but it’s still enough.

I’ve been experiencing some additional MS symptoms lately. It’s completely understandable given I’m experiencing more stress than usual. Still, when healthy habits lead to feeling better it’s easy to blame myself for not living a perfect, healthy life when symptoms emerge.

When I was diagnosed with MS, I felt like my body had betrayed me and I could no longer trust it. I thought I was super healthy, and suddenly my body went numb. Doctors told me I had an incurable disease that I’d had for years.

In my research of how others coped with MS, I often heard people approach it as warriors fighting a daily battle against their disease. I can appreciate the analogy and it makes sense, but it never resonated with me. Fighting myself feels exhausting. And what am I fighting? I have a super active immune system that thinks the insulation on my nerves (myelin) is an invader and needs to be destroyed. My immune system is fantastic at destroying other invaders. It’s just confused with myelin some of the time. Bummer.

It occurred to me to think of my body as my buddy who is great at some things and sucks at others but I love her just the same. My body didn’t betray me. She is doing the best she can. She held up magnificently for a long time, and she continues to do amazing things. My neurologist says with my MRI scans he would expect me to have some disability. At this point I have symptoms I notice but no one else does. I think it’s awesome that my body has compensated to get the nerve messages to parts of my body blocked by lesions.

It’s taken me time to shift my thinking from feeling betrayed to trusting myself again. Now I think being healthy and having an incurable disease are not completely opposite ends of the spectrum. They can both be true in one body.

My body has been doing the best it can all my life. Some of my habits help it, and some challenge it. Some activities and foods don’t support optimal physical health, but they nurture my mental health and feed my soul. Sometimes I’m coping and sometimes I’m nurturing. I think stressing out about not doing more can be more harmful to my health than the occasional indulgence.

So I may not be doing everything I can, but I’m balancing all aspects of my health in order to lead a fulfilling, active and hopefully long life!


This concludes the 154th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on May 1, 2014. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, April 29, 2014.

Comments for this post.

Carnival of MS Bloggers #153

Welcome to the Carnival of MS Bloggers, a monthly compendium of thoughts and experiences shared by those living with multiple sclerosis.

MS and Hope for Life Expectancy

by Laura at MultipleSclerosis.net

Preface: this entry is about MS and mortality rates and lifespans, which some people  find unsettling to think about; it is a tough topic to consider and even harder to write. Knowing this, you may choose to return to something else to read while I try to make sense of this.

Many times over, I have said Multiple Sclerosis usually will not kill us – it can make our lives miserable and set the stage for other health problems to overtake us, but for the most part MS does not kill. Complications from MS can be serious – the most likely scenarios I think of with MS is no longer being ambulatory, and eventually being bed-ridden.  People who are bedridden or even those who are in wheelchairs, can develop problems with circulation. They easily can get pneumonia.  Even simple bed sores from sitting or lying in one position too much can create infections that are often impossible to cure. Infections from UTI’s can go unnoticed for longer periods of time.  Swallowing for some people becomes difficult and aspiration or choking could be lethal.   But the MS – our autoimmune system turned onto ourselves – is not directly to blame, it is just complicit in our decline.

When first diagnosed, I read somewhere  the average life span of a person with MS used to be about 7 years less than the non-MS person.  I also read that the advent of Disease Modifying Therapies (DMTs) had changed that picture and now there was very little gap between the two populations. These were words of great hope and I have shared them more than once, encouraging people to strongly consider selecting a DMT with their doctor’s help, and sticking with it.

In discussion with various neurologists, I slowly began to see this picture wasn’t necessarily accurate.  Many of these numbers and ideas were shaped around the patients who were actively seen by doctors and did not include those who opt out of treatment or couldn’t afford to see a doctor.  Then there is another MS population  – the people who end up in long-term care facilities.  These people aren’t usually seen by neurologists and their care is handed over to other medical specialists. So much of the evidence to support this life span number was anecdotal and limited to a rather small population.

Now I am forced to look at those numbers and ideas again – a study released in December 2013, Survival in commercially insured multiple sclerosis patients and comparator subjects in the U.S. , Kaufman et al., concludes that people with MS who have commercial insurance, live six fewer years than others.  This study came to my attention when I began seeing headlines in my newsfeeds such as ‘People with MS live Shorter Lives’ and ‘MS Life Expectancy Shorter.’

For this study the authors looked at a rather large sample  population from the United States  – over 30,000 MS patients, and almost 90,000 non-MS subjects, and compared death rates from 1996-2009. To be sure they were comparing apples-to-apples, they matched the study subjects by sex and the region of the country where they lived, and which insurance company provided their coverage. They used information found in the Social Security Administration Death Master File (SSA DMF) and the National Death Index, as well as the Optuminsight  Research (OIR) database, which contains the records of the commercial health insurance companies in the United States. The researchers go into the fine detail as to how these cohorts were found, matched and studied and you can read the entire article online if you want those facts.

This seems to be the first large-scale look at these records in the United States and yields much the same results as similar studies done in other countries.  Researchers in Europe and Canada most recently have looked at the life expectancy of people with MS being 6-8 years less, depending on which study you read, compared to the projected 6 year mark in the US. There seems to be a consensus with these studies on the difference of years between MS and non-MS populations.

In the midst of this sobering study there is encouraging news.  It turns out that much older studies found a larger deficit number of years in MS vs non-MS populations. A Danish MS registry cited a 10 year mortality difference, but their study was performed between 1949-1996; the majority of those years were before DMTs were available – that didn’t begin until 1993. Over a similar span of decades many other studies also found results mirroring those of the Danish study.  A study in Norway found an 8 year difference, Italian researches identified a ten year difference and another out of Austria cited 15 years for females and 11 years for males.

It has only been in the past decade or two that neurologists are able to treat MS early and aggressively with DMTs.  It is easy to draw the conclusion the availability of DMTs has shortened the disadvantage of life expectancy for those of us with MS.  Yes, living 6 years less is crappy news but it is a better number than 8 or 10 or 15 years.

The study raises many questions and perhaps other researchers will continue the thoughts, particularly helping us to understand the disadvantage people who don’t have commercial insurance face in life expectancy and chronic disease. The study does not look at mortality rates for people who have government insurance (Medicare or Medicaid or Tri-care) or no insurance at all.

Discussing our mortality is not simple to do, and it is even more complex when it involves acknowledging the deck is stacked against us due to having Multiple Sclerosis.  The discrepancy of years should be getting smaller and smaller over the next few decades as a greater percentage of people with MS will have had DMTs as part of their treatment for the entire time of their diagnosis.  Right now the numbers include people who may not have had any treatment at all, or had disease modifying  therapy available only a decade or so.  I hope to be around and see what the numbers look like in another decade or two, and how the wider use of DMTs affects the lifespan of us all.

Wishing you well,
Laura

(c) MultipleSclerosis.net

This concludes the 153rd edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on April 3, 2014. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, April 1, 2014.

Comments for this post.

Carnival of MS Bloggers #152

Welcome to the Carnival of MS Bloggers, a monthly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Special Announcement:

Our blogger friend Judy Mercado of Peace on the Journey has published her inspiring and expressive haikus and poems in her new book Peace on the Journey: Poems which is available in paperback and Kindle editions.


Editorial Reviews

“For those struggling with chronic illness, loss of a loved one, or any major life challenge, the Peace on the Journey poems affirm that one can still choose to smile and resolutely renew life. In facing hardship honestly but tempering it with hope, these healing poems light a path out of despair.”

—Dr. Joan Barice

“In deceptively simple seventeen-syllable nuggets, these poems convey a complexity of emotion and perspective that quite often transcends the limits of language. They are nuggets of shared humanity that find their mark squarely in the heart and soul. Sometimes in whispers, sometimes in shouts, Judith Mercado’s words resonate with wisdom and truth, and grace the reader with intimacy, honesty and understanding.”

—Marc Stecker, Wheelchair Kamikaze

Book Description

The poems explore the theme of renewal in the face of adversity. Influenced by the haiku form, this collection offers a poem a day
for a year, though one can easily start on any page and progress in any order. Peace on the Journey is enrolled in Amazon’s Matchbook program. This means that if you already purchased the print edition in the past (or purchase one now), the Kindle price is reduced by 50%. Ten percent of net book proceeds will be donated to the Myelin Repair Foundation.

May my poems illumine your journey.

~ Judy

Work and Other Decisions

by Andrea of MS Changed My Life

We had no idea what curve balls the MS was going to throw our way, but we had the
basics: avoid heat, overexertion, and stress. I had been teaching 2nd grade for 4 years, so I was well established at my school.  I informed my principal of the situation when I returned from my maternity leave. I had asked her to not say anything to anyone else. From the beginning I just didn’t want people to see the disease when they looked at me. I wanted them to see me, not the MS. I don’t like for people to feel sorry for me or pity me. I never have. I handle what’s been given to me and move on with life. At any rate, I entered my 5th year of teaching that fall. I did tell some of my fellow teammates that if they see me stumbling through the halls, it was not because anyone had finally pushed me over the edge to cause me to drink at school.

That school year came and went without a hiccup. I regained the feeling in my legs about 8 weeks after the whole episode began. We’d done lots of reading about MS being passed on to children, and we found that our children would have a slightly higher chance of developing MS than “regular” children. Mine wasn’t a genetic issue. No one else in my family has it. I’m #4 of 6 kids, have 9 cousins, aunts, uncles, and grandparents, but I was the “lucky” one. We felt that it would not be a reckless or careless decision to have another child. I’d had absolutely no issues after that 8 week numbness in 2004, and I’d had a wonderful first pregnancy and delivery – other than going into pre-term labor as a result of our first pug passing away in my arms in the car on our way to the emergency vet. We are crazy pug people; 4 pugs and 2 cats. Pretty awful experience losing our little buddy. Our son was born 3.5 weeks early, but he was 7 lbs. 7 oz. and was perfectly healthy. We agreed that it was time for another little one.

My husband felt that it was also time for him to do what he could to support the MS Society by participating in the Cox MS Atlanta cycling weekend by riding 100 miles over 2 days. He signed up and raised money for the MS Society. It was obviously a charity event, but leave it to my husband to still make sure he crossed the line first. Our son and I raced to the finish (from home) to greet him. He finished so early that we missed his actual crossing of the finish line, but we were there soon after. That’s my guy! Forever in my corner.

Curtis’ first MS charity ride – September, 2005

This concludes the 152nd edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on March 6, 2014. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, October 1, 2013.

Comments for this post.

Carnival of MS Bloggers #151

Welcome to the Carnival of MS Bloggers, a monthly compendium of thoughts and experiences shared by those living with multiple sclerosis.

The Last 5,256,000 Minutes

by Jamie of The Tousled Apostle

Ten years is kind of a big deal.

 it’s a marriage that has lasted a decade or an object that stands the test of time, when something makes it to the ten-year mark, it’s worth celebrating. And that’s precisely what I’m doing tonight. Wayne is out playing a gig with the Peachtree Jazz Edition, and I’m relaxing in our beautiful home. A fire is crackling in my living room, Debussy is playing on the radio, and I’m curled up in my pajamas, cozy as a cat.
Ten years ago, things weren’t quite so copacetic.

On the evening of January 25, 2004, I was writhing in a hospital bed, suffering from a spinal headache I’d gotten from a spinal tap I’d undergone that afternoon. In the throes of that searing pain, my neurologist came in and told me, “You have MS. It’s not the end of the world. You can find more information on the Internet than I could ever tell you. Good night.” I’m not kidding; that’s all I got from him. After he’d left, we asked the nurse to call him and prescribe a pill for my headache. Both Wayne and I had been too shocked to ask when he was there.

A word of advice—NEVER look up a health question on the web. For Gregory House, M.D., everything inexplicable had to be lupus. For the Internet, it’s cancer and certain death.

Well, we did look it up, and we got the absolute worst case scenario for an MS patient. After an hour of scouring the web looking for a scrap of good news and bawling like babies, Wayne slammed the laptop closed and told me, “That’s enough.” That night, I was convinced that I’d never have a normal life ever again. And in some ways, I was right. I’ve not been the same since that day, and that’s a good thing.

The eight year anniversary, which I wrote about here, was a big milestone for me. It seemed like an unreachable date, and now here I am, two years beyond what once seemed impossible. I’ve since learned to use that word sparingly, if at all. Why? Because, as Matthew 19:26 tells us, “with God all things are possible.” He proves that to me on a daily basis.

The MS was just the first body blow in a five-year boxing match with life. I won’t go into the sad details here, but let’s just say that pretty much everything that could go wrong—short of one of us dying—did. But, as the speaker in Langston Hughes’ poem “Mother to Son” says, “I’se still goin’, honey, / I’se still climbin’, / And life for me ain’t been no crystal stair.”

The Family at Christmas 2012

Today, life isn’t without challenges, but there’s no cause for complaint. It’s not because I’m a saint; I’ve just learned that every difficulty has a reason. I know it because God has used the last ten years in a mighty way and transformed me into a usable vessel. But no matter what hardships happen, I know I’m far more blessed than I deserve. I have a wonderful husband who I adore, a loving family, a comfortable, safe home, an amazing job, and friends out the wazoo. I also recently became an aunt. (See adorable picture below for visual confirmation of the poo-dubber in question.)

Me with the lovely Miss Beatrix

I didn’t earn these blessings; they were freely given to me by my God. He has bestowed it all on me with a loving, liberal hand, and my life is marked by his loving-kindness. And tonight, as I sit nestled in my home, I can tell you the words of Isaiah 41:10 are true and trustworthy: “Do not fear, for I am with you. Do not anxiously look about you, for I am your God. I will strengthen you, surely I will help you, surely I will uphold you with My righteous right hand.” I can say they’re true because I learned to say it when the prognosis wasn’t as good, when the place I called home was a crummy apartment, and when I basically felt like Job sitting on the ash heap. And if he sees fit to take it all away tomorrow, I can say, “Yes, God is still good.”

I recently watched an episode of the BBC’s Call the Midwife in which the narrator says, “Health is the greatest of God’s gifts, but we take it for granted. It hangs on a thread as fine as a spider’s web, and the smallest thing can make it snap, leaving the strongest of us helpless in an instant. And in that instant, hope is our protector and love our panacea.”
Those words resonated with me because I’ve know what it feels like when that gossamer string snaps and you free fall into the unknown. I know what it is like when your body betrays you and you realize death and decay are eager to strip away what they can with their spiny fingers. However, I choose not to dwell on such things and live a life marked by hope and love instead. I count it all joy.

That’s something God made possible, and that’s the reason why I’m looking forward to the next ten years.

This concludes the 151st edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on February 6, 2014. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, February 4, 2014.

Comments for this post.