MS, the invisible condition. When it progresses rapidly, it's hard to 'prove', people don't readily understand or may not believe that someone is suffering much more than it seems.
The results of my first yearly MRI comparisons are in. Whether it's bad news or good news depends on how you see things. I knew the results weren't going to be 'good'. I know I'm getting worse. Much worse. In only about two years the change is dramatic.
He starts with the MS version of 'good' news. My brain is what the neurologist considers stable. "Three new lesions" he says, "we consider more will appear. Three is within normal expectations." I know I've been losing more words, mispronouncing and slurring sometimes, but not extreme, and my mental faculties are still sharp, I had figured on the results. "Yes, the thoracic, though..."
Lets get to it. This is what I wanted to know. My legs are quickly losing function, and sensory ability has been whacked out beyond all recognition for more than 6 months. This is why, when he wanted to get MRIs of the brain and cervical spine I said no and requested the brain and thoracic instead. My hands, though numbish and weakening, are much more stable and able than my legs, I want to see the thoracic first. He agreed.
He looked at his screen and back at me, we have that rapport now, he finally 'gets' my understanding, so he reads it word-for-word from the radiologist report and I nod. I knew it, but hearing it is another thing. "Significantly more damage, so much he's not counting and he calls it an 'extremely impressive amount of progression', so... not good."
But it IS concrete confirmation of what I know. To me, that is good. I never believed I was in the Relapse-Remitting type of Multiple Sclerosis category. I tried the therapy approved for the course in good hopes, but to no avail. I'm most likely a progressive type for which the drugs on the market don't work. "The Copaxone isn't working for you." and he outlined an aggressive therapy with a couple of scary drugs I'd already discounted from my willingness to try.
His face tells me he knows where my brain was already going, he did his doctor bit and made sure I understood options. I agreed to go along with the blood test to see if I was compatible with the infusion therapy anyway, and told me, whatever my choice, I needed to be off of the Copaxone for 30 days if I wanted to start and was a candidate.
I'm not going to go over side effects. In reality, it boils down to this:
Am I willing to sacrifice the health of my brain, heart, liver and/or kidneys to save my legs? Am I willing to risk shortening my life to *maybe* climb mountains?
The answer is no. Hell no. Am I willing to research and seek alternative therapies? Yes. Am I willing to treat myself well and go as hard as I can for as long as I can? Yes.
Am I doing the right thing for me? Yes.
I quit Copaxone on Thursday, after 1 year and a month. I'm keeping track of the differences I feel being off of a daily injectable drug. Listening to myself.
After all, I am the only one who knows what is best for me. I have listened to the feedback my body has given me all of my life. It led me to a quick diagnosis of this awful condition. It will lead me through it.
15 December 2013
25 April 2013
The multiple sclerosis ‘hug’ is a tight feeling around the torso of some people living with the condition. I understand it to be caused by the spasms of intercostals, the muscles present in between the ribs. It is hard to describe, and harder to live with. I was afflicted by several symptoms of MS before the hug came, but it was the hug which alarmed me enough to seek a doctor.
It came on slowly. It wasn’t a constant sensation, this tight-band feeling just beneath my breasts and all the way around my torso. It felt like I was wearing a 34 bra on my 36 frame, uncomfortable, but not painful. It came and went, depending on my activity level.
I’m not sure of the exact date it came and stayed, but it has been constant for a year. It is easily the most insidious of my suite of MS symptoms. It changes the shape of my ribcage when it becomes very tight. On a good day, it is a 3-4 on a scale from 1-10. Most days are a 5-6, and when relapsing, 7-8. I don’t want to know what the worst of it feels like.
Last month, I realized it was about a full year old. I decided it wasn’t going to just go away. I gave it a birthday of May 1st and told everyone I was going to name it since it was a real thing. Everyone knows I’m a namer-of-things, so this isn’t anything out of the ordinary.
This MS hug is now always present, but it is never seen. It is always in the background and always unpredictable, yet if it wasn’t for the hug coming to join my party, I might not have sought medical attention. I could have had my treatment delayed and been far worse off than I am now.
So to that, I have decided to name the constant hug around my chest Boobs Radley. While many people identify with Scout in the story ‘To Kill a Mockingbird’ I identify closer to Boo, and so does my hug ;) I’ll probably shorten the in-novel nickname to an even shorter nickname for my purposes.
If you can’t live with it or rip it out and burn it, you ought to give it a name and throw a party for it.
22 March 2013
Jessie and Sam:
Mere weeks before MS blew up in my lap, I’d spent an afternoon painting a landscape study outdoors by the side of a neighborhood road. A woman stopped and admired the work I had propped up beside me. We talked for only a few minutes, then in her thick German accent, she wanted to know if I could do a portrait for her from an old photo. For sure, I can, ma’am. We exchanged particulars, size, price, and then I told her I would be back at that same spot the next morning if she decided to commission a portrait.
She was waiting in the morning light when I got there. She had a black and white photo of a couple sitting on their farmhouse porch. They were her husband’s parents, now gone. Her son, their grandson, was moving into a house on the property and she wanted to gift the portrait to him at the housewarming party.
“Do you want it in color?”
“Oh? Can you do that?”
“Yes, ma’am.”… I asked what color his eyes were, and she described the shade of blue then described every other possible color in the photo. She was charming, and I commented how much I loved her accent, it reminded me of my teens in Bavaria. We were fast friends.
She paid me half then, as discussed, and then before she left, I asked “What were their names?”
Her eyes lit that I would ask, “Jessie and Sam”.
So I started like I do all of my oil paintings… sketching it in with warm sienna, a natural base for any outcome, just to get it situated in the canvas to my liking, sharpening the shadows and erasing with thinner when needed and laying white in where I know the highest areas are going to be.
She loved the finished painting, and hung it in an unused room until the housewarming. I saw her a few weeks later. She reported that her husband found the painting, and loved it so much that he wanted to keep it. It hangs in the formal living room. He said, "I'm keeping it, he can have it when I die"
20 March 2013
Major Pain, reporting for duty.
MS comes with it. Neuropathy, muscle pain, spasms, tingles, burners, zingers, and aches, in varying strengths and lengths and in any area. I chose to battle the sudden onslaught with muscle relaxers and a narcotic pain reliever.
With my background of helping nursing students through anatomy and physiology, and my degree focusing on anthropologic sociology of health and wellness, I am not a good patient. I’m an aggravating, semi-demanding, know-it-all with only my survival needs mattering in the maze of the modern-medical complex. I came armed with knowledge and particular questions and an attitude. I’m not the average patient (no one is), and patronization pisses me off. “I’m not… You will… and I need” is my modus operandi … It is not pretty. I had to eyeroll him once when I showed him a trick with reading the MRIs …
Dr. “Oh wow, how did you do that!” …
Me: “First you do this then click here and roll your wheel…”
Dr: “Huh! I learned something new… I never knew about that”.
Me: *smirk* “I told you before; I do this for a living.”
When you get in the rhythm of neurologist visits, it’s every month until they get a diagnosis and get you on meds. After that, it is every six months…”Howdy, hey, how’re you doing, uh-huh, uh-huh, here’s six months of refills, see you later, bye”.
Well he can’t give a six month refill on a narcotic, so on our last visit in January, he gave me one more month Rx of the narcotic and six months of an anti-seizure drug commonly used to treat nerve pain. Supposed to be taken strictly, regularly, and without stopping unless talking to him first, this medication is well known to me. I have been warned, and I’ve seen it make people cuckoo-crazy.
I refuse to take it; I’m not in that much pain, right?! I split up the narcotic pain medication to make it last, and it helped dull everything and let me relax enough to sleep, yet it added to tiredness, and could jack-up the digestive system. Also, the wasteland epidemic of hard-addicted people it has left in its wake. For certain it helped, I was more than grateful to have it, however MS is one big side effect, and adding new side effects to it doesn’t help me.
I’ve been building a life-long habit of NOT taking the medicines prescribed by my doctors, unless I feel I’m in desperate need. As I have said before, I’ve maintained a scant conventional medicine cabinet. I will, however, use near surgical precision with the medications I deem worthy of accepting. More often than not though, I’ve been heard to say: “Aw, naw… I ain’t taking THAT shit.”
I don’t function well without the muscle relaxers. The way MS affected me, damaged nerves lead to periods of spasms of confused muscles. Allowing them to chill out enables me to move more fluidly. The stumbles and falls are a direct result of those confused muscles (temporarily) unable to operate my personally learned balance.
I can only describe it as like being a toddler again, learning which muscles turn and balance. Reorientation is what I’m focused on trying to do. Now that I feel that have stopped the barreling train of damage my body was inflicting on itself, I’m going to try to start backing it up. I’m still not in remission, it’s still pretty bad, but I’m not getting “worse”. The relaxers are enabling me to reconnect with the world and relearn balance, and I feel I have tweaked the amounts and scheduling to their most beneficial, and am near religious about Copaxone, and feel it is finally holding me steady.
I’m fairly proud to announce that I’m on zero pain medications. I haven’t even taken an aspirin in a couple of weeks. I do experience the pain, but I have begun to learn my limits. I just can not push myself as physically as I have been able to.
I told my sons I have been lucky to have lived this long with my particular super-human abilities, and now I’m like the rest of the mortals. Along with having already been in a better position than most to absorb the changes brought on by MS, I have learned to use natural means, stretching, semi-meditations, and good old rest to deal with pain when I experience it.
Furthermore, since taking the last of the narcotics, any side effects that came with them have vanished and I feel ten times better by that alone.
Maybe it’s because Spring is here, happy equinox everybody! That may have bearings on the up-tick. A combination of new resolve, sunshine, and plain old fashioned taking it. Sounds like a plan to me. I’ll let you know how it goes.
17 March 2013
You may notice I'm working on a set of personal experience chapters laced with my knowledge of human anatomy and physiology. Here is a short one...
MS and Sex:
Where there's a will, there's a way.
There's more than one way to peel a banana
MS and Sex:
Where there's a will, there's a way.
There's more than one way to peel a banana
Personalized Treatment of Multiple Sclerosis and Disease Pathology:
Multiple sclerosis is a highly individualized disease. Everyone who has it experiences and develops MS differently, no matter the common hallmark symptoms. More times than I’d like, I’ve heard, “Oh! You have MS like Montel” or Annette Funicello, or ‘Ozzy’s kid’ or ‘Sharon’s son’ or like my aunt, cousin’s friend… ad nauseum. I’ve learned to reply, “No, I have MS like Darla does. Montel (et al) has it like he (she, they) does (do).”
People diagnosed with MS are all treated with different combinations of a wide variety of medications, and I wasn’t about to start taking a basic approach to my MS. I wasn’t going to take my neurologist’s word for any drug, and I was going to ingest or inject my preferred substances on my terms.
During our first appointment, without waiting for tests and results (we both felt my condition was 99% certain) we decided to try prednisone, a cortico-steroid, to see if it could stop the inflammation of any affected nerves and knock the harshest symptoms down. Yay, yes, please. Set up the 1st MRI and blood work.
By the way, aggressive steroid treatment sucks ass.
6 pills (all at once) first two days, 5 pills (all at once) next two days, 4 the next and so on till gone. Hot, cold, pissed, hungry, nauseated, blech, worst of all… It did nothing, NOTHING for the crazy tight corset hug, stumbling, numb, exhausted, stuttering wreck I’d become in 3 months.
First battery of tests came back positive for lesions on the thoracic and cervical spine and Lyme disease. The FUCK?!
Hazard of living in the swamp with ticks, Lyme disease and MS have many of the same symptoms, and Lyme is known to have false positives, and is a bog of idiosyncrasies of its own.
We treated that with 30 days of doxycycline, a heavy antibiotic which treatment, by the way, sucks ass. All symptoms stay wicked tight, numb and miserable and worsening.
He prescribed Flexeril, a muscle relaxing drug, to help the spasms of my intercostals (muscles between the ribs) which cause the MS hug, a result of the thoracic lesions. Percocet, a narcotic painkiller I was familiar and comfortable with, was prescribed to ease the pain associated with constant spasms. I felt like I’d done sit-ups for hours. My rib cage was changing shape, and my thighs were having the same type of spasms more often.
To be positive for MS, I needed a brain MRI to confirm lesions separate from the spinal cord. The brain scan was lit up. Ding, Ding, I have MS.
My neurologist wanted to me set up on disease modifying drugs (DMTDs or DMT) a.s.a.p. This class of drug is injected by syringe. There are several choices, all with a plethora of side effects, but with the same goal, to stop the progression of damage. I feel I should stop here to give a cursory explanation of the disease pathology of MS.
Multiple Sclerosis literally means multiple scars; the disease causes scar tissue exclusively to the central nervous system (CNS). The brain and spinal cord make up the central nervous system with a marvelous network of nerves which control and sense everything, EVERYTHING, we feel and do. These collections of nerves are known as white and grey matter. The nerves of the white matter are coated with a protective fatty sheath called myelin. It’s like the coating on an electrical cord, protecting the current running on the wires inside of it. This myelin gets destroyed during progression of the disease. And, like that electrical cord, it can get a bare spot and still work; it may spark and short out or slow and fizzle, you may not even notice. If it continues to receive damage, it can get cut completely and never work again. Enter the destroyer of myelin.
The human immune system is like a little army running around the body and destroying infectious bodies and agents. The CNS is enclosed from the rest of the body by the blood-brain-barrier (BBB). This BBB allows the exchange of essential nutrients and oxygen, but keeps everything else out, including certain drugs and antibodies. With MS, the cells of the body’s immune system breach the BBB and begin to attack the myelin during some trigger illness as diverse and mysterious as each body MS happens in. We know it is a combination of factors, but it remains difficult to decipher.
The injectable DMT drugs act as a protection to or, in some cases, as a mimic of, the myelin sheath from deterioration by the immune system. This (hopefully) slows, stops, and sometimes reverses damage. Similar to using electrical tape on the damaged electrical cord, it doesn’t ‘fix’ it, but it helps. Sometimes, though, it doesn’t help, the damage is done.
My neurologist wanted me to start on Avonex, a beta-drug injected into the muscle once a week. Often followed by a 24-48 hour flu-like hangover, this drug is also known to cause depression, and heart and liver disease.
No, thank you, that isn’t going to happen. Most of them are scary drugs administered once a week. One drug, the copolymer amino acid glatiramer acetate Copaxone doesn’t carry those side effects, but you have to inject it every day, and many people have a needle aversion. I do not. However, it does come with one frightening side effect the others do not. Immediately after injection a, 15-20 minute reaction may occur. It comes with a pounding heartbeat, difficulty breathing, anxiety, chest pains, hives, the works. It goes away without further event or damage. Oh, and if you don’t rotate the injections the injection can cause irreversible sub-cutaneous tissue damage. Yet, it has been effective at slowing the progression. For moderate to severe MS like mine, the alternative to DMT is a quickened invalidation to death, like aging 5-10 times too fast or faster.
I did my homework. For one drug, the daily and possibly heart-pounding ride Copaxone, the benefits outweighed the risks. I rejected his prescription and told him I wanted Copaxone and we set it up.
It freaked me out a little, inside. My medicine cabinet before MS consisted of aspirin, children’s Tylenol, and band-aids, I kid you not. Now I was supposed to stick a needle of some crazy concoction somewhere on my body every damn day?!
I had one very paranoid and excruciating anxiety trip one afternoon, and got the freaks out of my system. To add to my resolve, I was getting worse in the interim of getting the meds set up.
My neurologist did not want to prescribe Percocet regularly because it was a narcotic and wanted me take Neurontin, an anti-seizure medication used to treat nerve pain. It came with two different sheets of warnings from two different agencies warning me of the same conditions: behavioral or mood changes, depression, thoughts of suicide, attempt at suicide… stop right there. My mama always said, “You don’t have to tell ME twice”. And Dr. Neurosurgeon can stick that one.
Zanaflex is a class of stronger muscle relaxers indicated mostly for spinal cord injuries and multiple sclerosis and works well in combination with Flexeril to make the spasms a bit more bearable. The spasticity still affects me daily, but I’m learning to pace myself and predict effects of my efforts.
Treating myself better, sharpening up my diet and learning the ways I can exercise safely is essential, relaxation, napping, and indulgence of self rounds out the treatment I have developed so far.
15 March 2013
My 18 year old son lives at the old home place with my parents. They’re in their 60’s and he is the strong back of the house. His planned career choice(s) haven’t panned out yet. He, like many 18 year olds, is having a hard time finding a job. This is dejecting. We talk about this often, and I’ve counseled him on the idea that the traditional job market may not be the way. I’ve warned him of the trap of paycheck grind, and ask him questions meant to make him delve. I tell him the labor-driven mistakes I feel I’ve made. I tell him every “I wanted to be” dream I had (have).
Recently, I asked him “If having lots of money wasn’t THE variable of your labor, what would you be satisfied in spending your days and nights doing… not counting being a gigolo.”
He told me that he would love to sail tall ships… just be a mate and live aboard. I awwwed but it came out arrrrrr. That’s me boy.
I’ve had serious changes lately, and had to ask myself the same thing. Hiking the entire
at once isn’t going to happen this summer.
I dug past the layers of archaeologist, artist, teacher, beach bum,
sailor/pirate, burlesque dancer, beer taster, deejay, and rock star, to the
pure heart of my kernel. I wanted to be all of those because great writers made
me want to since I learned to read at 4 years old. I would daydream a million
stories of what I could be, what could happen… the eternal question “What if…”
The answer to the question is to write stories, to record reality as I see it, to fantasize all day, and tell people “What if…”
I’ve been forced by my own body to drop and rest and now I finally have time to sit and sift through years of writing I’ve done in secret and not-so-secret, then mix it up, light it up, and let it blow.
I’ve always been a writer, I just haven’t pushed it. Now my inside pushes me in my seat and says “Do it!"
All right, all right, me! … Damn!
14 March 2013
Year 01 A.M.S. – Update/Gut Check:
As far as I can gather, it has been one year since I started feeling (read sensing) the effects of Multiple Sclerosis. At the end of winter, February to March of 2012, I started noticing changes which came as red-flag moments.
One day in early spring I walked outside and I couldn’t see anything in the center of my field of vision from my right eye. I could “see”, but it was as if I’d looked at the sun too long with only one eye, or had a camera flash on only my right side. My depth perception was all wonky, also. Looking at the clothesline or the line of Ginger’s leash would make my head swim and beg my eyes to focus. For a few days, it happened every time I went outside, and I mentioned it to my family a couple of times, because it was weird. After a few weeks, it just cleared up. I forgot about it, mostly, unless it flared up after strenuous exercise or getting overheated.
“…man, I wonder why the bottom of my foot is numb”
“…huh, I wonder why I can’t walk a straight line across the back yard.”
“…damn, it’s crazy I can’t put my flip-flops on without almost falling over!” and…
“…Oh MY G…move! I have to pee, RIGHT NOW!
And once in the place to go ….now, why can’t I GO???”
Mental changes came last spring, also, but I didn’t recognize those as readily. Honestly, when I think back, the mind slides of multiple sclerosis may have come before my eyesight alerted me to the fact that something was wrong. For months, I’d noticed I would forget words that I was just getting ready to use as I started speaking. Replacing it with the first word that fit, and saying “but no, that’s not the word I’m thinking of, really, but you know…” always with the feeling that the word I wanted was just on the tip of my tongue.
I can taste them, those disappearing words that flit and land in my mind as I form a thought to speak. Then, when I start speaking, it lights away, like a butterfly or a bird you can still see but can no longer positively identify.
That was first, and easily the most aggravating, loss to MS, but it wasn’t the last. Other than some mild foot numbness and ultra-clumsiness, I started getting these lightning, itchy-tickling flitters across the right side of my belly at my waistline. After a few weeks of feeling these, the skin of my belly numbed. I’m a stomach-splayed sleeper, and it felt like I was lying on bunched up blankets, even though I was only on smooth sheets.
I’ve been teaching human anatomy and physiology for 6 years. I knew it was a nervous system issue, so I thought I may be developing shingles since I’d had chicken pox in my teens. I waited for a rash which never came.
By summer, I had no sense of skin sensation all the way around my mid torso and developed a tight-band feeling, like I was wearing a too-tight bra. It would come and go, whether I was wearing a bra or not. I couldn’t feel the exact placement of someone else’s hands on my torso if I didn’t see the touch.
My right hand began to go numb. Washing my hands, both hot and cold water felt different to my right hand compared to my left hand. It tingled and my fine-touch sense suffered.
I began to think I had a vertebral disk problem, maybe brought on by being a tall girl in a world made a bit too short. It seemed to be centered in the thoracic column, which wasn’t as common of an area of disk-slippage. But it didn’t explain my hand numbness, because that would be a cervical problem. I did some research and had a list of possible conditions, one of which was MS, but I didn’t even consider it was anything THAT severe, so I dismissed it instantly.
I was about to take a beach vacation with family, and just happened to have a retired orthopedic surgeon, and a physical therapist as companions, and waited for the beach week to see if they could “see” anything. At this point, I hadn’t drawn a connection between the vision problems and intermittent foot numbness to the more alarming corset-grip I was in.
Nor had I drawn a connection to a particularly strange and repetitive sensation I’d been having for months. When I drive, I keep my phone in my lap, so I don’t have to look for it if it rings while I’m driving. When I safely can, I glance down at it. A lighting flash of sensation, not quite pain, but alarming nonetheless, would shoot down my spine from the nape of my neck to the sacral plexus, and across my shoulders and through my hips. It is sharp and disappears just as quick. I now know it is L’hermittes Sign, common in people with cervical lesions of MS. I thought I’d pushed it too far in yoga, or stretched out my cord as an old headbanger in the 80s, and was now paying the price.
Nor the feeling of my thighs needing to stretch when I got up from sitting, you know when you’ve been down too long and you get up and stretch, and you get in it deep and your muscles lock up, like a good full body yawn? It’s like that but somewhat violently and even when I don’t want to stretch. It’s called spasticity, and it too is common with MS.
The beach vacation was very nice, but I was miserable, and everyone noticed I was definitely not myself. Beach heat and MS equals wretched fatigue. I would crash out at 8pm before adult game time/midnight swim hot tub partaking, and I shorted out on hours-long beach combing with the kids. We had a sand volleyball court in the back yard of the beach house, so my son and I began playing, and I fell hard several times stumbling while running and looking up. I blamed it on the sand and age, but everyone knew I was more able than that. It was a shocking display. This was not normal, this was not me. My resident vacation doctors were just as baffled, but they didn’t have all the information, because I hadn’t added the other ‘little’ things into the conversation.
I had already made an appointment to see my doctor the Monday after vacation. In the interim I finally clicked on the MS link on my list of possible causes. It was a veritable checklist for everything I’d been feeling, and it all clicked in at once. Oh, shit.
I started researching MS exclusively, because I knew. When I saw my Doctor, I didn’t say MS, I just described this odd list of symptoms, we agreed I needed a neurologist, and I did the same with him. I described and let him draw his own conclusions; we agreed I needed MRIs and blood screenings. Of course everything was positive. By September, it went on my history. Official: Multiple Sclerosis.
Now that I have researched my way around to my satisfaction, I think the lesions began forming in my brain first before forming down my spine. Lesions have been found on my brain, my cervical spinal cord and my thoracic spinal cord… every where we scanned.
They seem to have developed with devastating swiftness as I have, in one year, gone from a fit and active, multitasking woman to one who struggles through muscle spasms slowing every step to the kitchen for a cup of morning coffee, and needs a nap by the time the school bus leaves. I’ve gone from climbing mountains to using a cane to get around campus so I don’t fall down.
I can’t get all the way through a grocery store for a full shopping trip anymore.
On November 3, 2012, I began disease modifying treatment (DMT). I rejected the medication my neurologist preferred for the one I researched as best for me. By that time, I was having much difficulty walking, using stairs, and I was going down fast. I have no problem injecting my medication every day, because I know what the alternative is. It’s a wheelchair. I started DMT just in time.
I plan on writing about the particulars of treatment later.
I’ve been in treatment for four months, and I think I have finally leveled out and learned my limitations. The DMT does nothing to help the symptoms, it is to slow (hopefully stop) the advancement of my condition. My symptoms have never abated, and have yet to go into remission, but I am learning to carry on.
Muscle relaxing medications help take the edge off function disability, and painkillers helped with learning to deal with the pain. You will notice ‘painkillers helped” is past tense. That, too I plan on writing about the particulars of later.
It’s a full-on, crazy ass trip. But it is not the whole journey.
I plan on writing about the particulars of the journey later.