UPDATE: Summer in Austin, Texas

It's too freaking HOT!

Highs have been well over 100 degrees F almost every single day since May, sometimes up to 107F. Everybody's tired of shattering heat records, of watching lawns and trees wither and die,

and of wearing out our air conditioners.

Where is the fast-forward button?

I can't wait until October...

New Symptom; "Phantom Heat"

There's actual heat and there's "phantom" heat; most of Texas is dealing with actual heat.

It's not even Summer yet, but it's been hotter than usual (for June anyway) this year, and "usual" is no picnic in Central Texas.

For most of this month, the high temperatures here in Austin have hit 99 or 100 degrees, with little if any breeze or chance of rain. It's early for this level of heat, and it's scary for everybody, not just farmers. At this rate, we'll have highs of 115 for most of August!

I pretty much just hide out in the air conditioning from May through early October; Claude and I go for "walkies" for about an hour early in the morning, but some days it's too warm for me at 7am.

Things might start to cool off in about three and a half months...

Seriously, if I could afford to travel, and if my spine was up to it, I would so be in Canada! I've never been there, but my Dad and his brothers used to go to summer camp in Nova Scotia; he said they had to start every day with a brisk nude swim in the icy cold Bay of Fundy, which remains around 43 degrees F year around.

That sounds really good right now. This time of year, popsicles and ice cream are my main food group and my only defense.

Anyway, to compliment the Hellish weather, I've developed a new sensory symptom that leans into the heat - it feels like there's an invisible heating pad on my right upper back and on the outside of my lower right leg.


Seriously, it feels like heat is radiating both onto and from those areas, but of course the skin actually feels normal to the touch. All this phantom warmth might have been welcome during the Winter, but right now I could do without it.

Still, as sensory symptoms go, it definitely beats pain, burning, or itching, so I'm not complainin', just sayin'.

Update: Spring 2009

Man, this is frustrating! I just spent over an hour trying to write this post, updating things and lamenting the toll my memory problems have taken on my life this week, etc. But when I was practically finished, I screwed up by forgetting to save my post before I went to another page, and now I have to start over! Crap!

(Shit for Brains!- I really wasn't trying to demonstrate how lame I am...)

So, let's see, where was I? Well, of course I still have M.S. (no surprise there), and I'm still on LDN, and it's still working great for me, but the bad news is that I'm running out and am having trouble getting more. OMG!

See, the trouble started when my beloved primary care physician, "Dr. Connie", who'd been taking care of me for over 30 years, closed her practice last Fall and moved to the Texas Panhandle*. (*That's like the Siberia of Texas).

"Dr. Connie" was the doctor who'd provided me with my LDN, but now the refills are all gone and the last bottle of pills will be empty in two days. This isn't her fault at all, it's mine; she left me really well set-up with refills on everything before she split town. I knew when I won disability that my Medicare coverage would start on the first of May (last month), and naively thought I'd be able to find a female primary care doc taking new Medicare patients, but so far no luck. I've been without any blood pressure medicine for about three weeks now, and might explode at any moment...

Happily, I do still have an oto-neurologist for my chronic inner-ear issues, and since he prescribes LDN for many of his patients, I thought I could go see him and get a script for the LDN. Simple, right? Anyway, I got an appointment for last Thursday, June 4th, and had arranged to get a ride from my friend John. (I'd call him "Saint John" but that name's taken...)

By the way, I guess I haven't mentioned that I don't drive anymore; my near-total inability to multi-task seemed to me like a really bad quality in a driver, so I voluntarily let my driver's license lapse some time ago and have been staying home most of the time. That's me and my dog Claude.

I do have a really nice mobility scooter that gets me around the neighborhood and to nearby stores. At home I have cable, internet, and air conditioning, so I'm content. And John comes over most Thursdays to take me wherever I need or want to go, and that's worked out wonderfully. Thank you, Johnny!

So day-before-yesterday, sweet John took me to the oto-neurologist's office, which is just outside Austin. I would have gone sooner but Social Security had the impression that my name was still my married name from back in the '70's (shudder!) and getting that changed wasn't quick or easy since I had no current I.D.. In fact, I actually had to buy a wheelchair for the process!

See, standing in line is impossible for me because of spinal issues that have nothing to do with M.S. Anyway, gradually I managed to get a new DPS I.D., and another Thursday John and I spent two hours in line at Social Security applying for a corrected card, but I'm still waiting for my corrected Medicare card to arrive. Fortunately it's supposedly all fixed on their website, which was enough for the doctor's office.

Anyway, since my inner-ear issues had been pretty well under control (at least, until recently), I hadn't been to see this doctor for almost two years. So when I got there, I had to start over, undergoing two full hours of hearing, balance, and memory testing before I ever even saw the doctor. After I had made the appointment and before the day arrived, I had a relapse of the vertigo, so that became a primary issue.

Anyway, by the time I finally saw the doc, it wasn't the regular guy after all but a new associate, a nice guy who wasn't very familiar with LDN. (He asked the nurse if it was a "trip-scrip"; I assured him it isn't!) My head was spinning from the testing, and my lame brain was further overwhelmed by all the information I was given; I left the office with a ream of documents, 10 pages just of results from all the testing; bundles of samples of new meds and accompanying brochures (for things like "neurotransmitter support"); orders for labs; a butt-full of cortisone, but until late that night I didn't realize that I still didn't have a prescription for the LDN! That was the main reason I went there, and we did discuss it, but ultimately it sort of got overlooked. When I screw up things like this it can really get me down, but I'm trying to sort of rise above myself...

I called the doctor's office yesterday and left messages starting at 5am, hoping to be able to pick up a Rx for LDN, but they're only open a half day on Fridays and take 24 busniess hours to respond to calls, so I never got a call back. On Monday morning I'll start yanking their chain again...

The last time I ran out of LDN (and was without it for a week or so), I had a wicked relapse and was left with chronic iner-ear problems. Obviously I'm hoping that won't happen this time. The cortisone shot (which was for the inner ear thing) should help, but I'm sure anxious to get my LDN!

I GOT DISABILITY!!

I guess everybody knows that applying for Social Security Disability isn't easy - for one thing, the Social Security Disability forms are very poorly designed; the questions sometimes double back on themselves and can drive you nuts if you aren't already.

The whole process tends to add insult to injury, and I often felt it was designed to make the applicant give up, which worked for awhile - I did give up! But ultimately I had no choice but to start over and hang in there. I finally won disability after only one denial, and without an attorney! However, I had worked in a doctor's office myself for many years, so at least I had the advantage of understanding the whole mess a little better than the average applicant.

The first thing I did was to look for information on winning disability and found relevant forms on the websites of disability advocates and disability attorneys. (Google "applying for disability").

I downloaded what I needed from this site; one form for physical disability and another for mental disability (re: my memory issues). These are long, detailed forms, and the way you state your answers is really important. It takes work, hard work, and for years I just wasn't up to it, which was really depressing.

But ultimately I HAD to face it; I'd been living without any health insurance for too long and my savings were long gone. But I still had to pace myself, spreading out the process of filling out the initial application over several months. I get dizzy if I read too much (due to chronic inner-ear problems), and on top of that, I had a badly injured right wrist that was very painful for almost a year, and that made it even harder, what with all the writing. (In fact, that's why this blog wasn't updated for so long!)

The hardest part of the application for me was writing the required summary of my disabilities, sort of an 'essay question'; I worked really hard on that, but after countless hours, I still didn't like the way it sounded, so I asked my dear friend John for help. John's a non-medical person but is very smart, incredibly patient, and a wonderful writer, and he did a great job of editing and restating things for me. (Bless his heart, he sure got too-much-information about me!) But it was great having some help after months of struggling alone; John's editing made the application much more concise and clear.

After I'd finished my part, I took the rest to my doctor.

IMPORTANT: You absolutely cannot and should not expect to just send forms to your doctor and have him/her take precious time and effort to fill them out; you need to make an appointment (it took three different sessions for me!) specifically to get forms filled out.

Your doc's office will still have to provide records and fill out other forms for you, for which the government provides very inadequate compensation. Obviously it helps if your doctor really understands that you are truly disabled and cannot possibly hold down a job; I had no problem there because I used to work in my primary care physician's office and she knew my work ethic and saw me struggling harder and harder over the years, taking longer and longer to get less and less done.

Being disabled and applying for disability sucks hard enough without having a doubting doctor! Your doc needs to know beyond a shadow of a doubt that you're not faking anything, much less asking the doc to fake anything. If not, I guess I'd advise getting a lawyer, who will probably steer you to the right doctor.

I'm probably going to add more to this later, but for now, that's my story and I hope it's helpful. If you or someone you know is applying for disability, check that link for the appropriate disability form(s) and see what you think...

You Think it's Hard to Get Disability in the U.S.?

Sadly, but not surprisingly, my application for Social Security Disability benefits was recently denied. And while the process of appealing the ciless denial is both disheartening and a major hassle, I can't really complain when I read stuff like this story from the U.K., upon which I won't even coment...

Exclusive: Martial Arts Champion Hit by Multiple Sclerosis Denied Benefits
Aug 28 2008 By Lachlan Mackinnon

A martial arts champion whose life was "destroyed" by multiple sclerosis has been refused benefits - because she can still talk.

Tae Kwon Do silver medallist Kirsten McLaughlin, 33, requires round-the-clock care from husband Alan, 34.

But she has been denied disability living allowance as the authorities claim she only needs "comfort and assistance" and can still "communicate".

Kirsten, who won her silver medal at the Tae Kwon Do world championships in Sardinia in 2006, now has to be carried up the stairs to the toilet by Alan, who also has to help her dress and undress.

Her life is a far cry from the days when she was competing in contests with gold medal-winning sons Ryan, 13, and Darren, nine, also fellow Tae Kwon Do hotshots.
Kirsten, of Drumchapel, Glasgow, said yesterday: "I have no life. I am trapped in this house constantly.

"I can't believe some government civil servant sitting in an office somewhere has decided I don't deserve these benefits. It is a ridiculous decision. And the reasons they've given to justify themselves are even more ludicrous.

"I have a three-wheel zimmer to help me get around the house and I am in constant pain. I suffer from spasms that feel like electric shocks through me.

"My speech goes when I get tired and my legs go into cramps at night.

"Alan has to rub my legs at least five times during the night.

"My life and my social circle was based around Tae Kwon Do and I've lost everything. It breaks my heart not to be able to take the boys to training.

"Everything is a battle for me. I don't live from day to day, I live from hour to hour because I never know what's round the corner. I've had three relapses in 15 months and can't see things getting much better."

The family are forced to scrape by on s70 a week income support, as well as child tax credits and child benefit. The extra DLA payments of up to s110 a week would ease the burden of paying their mortgage and raising their kids.

But in a letter two weeks ago, the Department for Work and Pensions denied she was eligible for the disability payment. Among the reasons was her ability to "communicate".

They also claimed she didn't need help getting around, making meals, getting up in the morning, going to the toilet, bathing and dressing - all of which Kirsten and Alan flatly deny.

In a previous letter, the department accepted Kirsten needs help to "move about indoors" - despite insisting, in a previous paragraph, she did not require assistance "getting around outdoors" with "appropriate aids".

Earlier this year, it emerged drug addicts and alcoholics claiming the payment had risen five-fold, from 3000 in 1997 to almost 17,000 in 2007.

Claimants with psychosis - a form of mental illness said to be often caused by smoking cannabis - leapt from63,000 to 148,000.

Alan said: "They hand the payment out freely to addicts but won't give it to my wife who has led an active, healthy life.

"Our whole family life was based around Tae Kwon Do but that's all come to a standstill. The kids can't get along to their training as often because it all depends on how Kirsten is feeling.

"In the last year, she has been outside 10 times at the most. She has been imprisoned by MS."

Kirsten was diagnosed with MS eight months ago and wears a cast on her left arm because it keeps going into agonising spasms.

And she had to close down her printing firm six months ago because she couldn't cope.

Alan said: "Losing her business made her feel completely depressed. She built it up over eight years but her world collapsed."

He revealed the benefits battle had drained Kirsten even further, adding: "It is a complete slap in the face. Kirsten's condition has gone downhill in the last year or so.

"She is in constant pain and is always fatigued to the point where she virtually passes out. We've been told her condition will steadily deteriorate.

"Having the disability living allowance would make a real difference because it would mean we could adapt the home by fitting things like a stairlift.

"I can't work because I'm looking after Kirsten and we've had to rely on her dad to bail us out with the mortgage for the last few months."

Alan added: "With the advances in stem cell research, there is some suggestion there could be a cure within the next five years, which gives us hope."

Scotland has one of the highest rates of MS in the world. More than 10,000 Scots have the disease, which causes the body's immune system to attack and destroy nerves. Symptoms can range from pins and needles to paralysis.

A Department for Work and Pensions spokeswoman said: "Claims are assessed taking into account information provided by customers and on the basis of expert medical advice.

"If a customer is unhappy with the decision made, they can ask for it to be reviewed and, if necessary, appeal to a tribunal.

"Unfortunately, we are unable to talk about individual cases."

I found the story here-

http://www.dailyrecord.co.uk/news/scottish-news/2008/08/28/no-way-to-treat-a-hero-86908-20714087/

We're Supposed to Call Them "Challenges"...

I haven't updated this for many months, so there are some issues...

First of all, after a couple of years of chronic, asymptomatic bladder infections that I assumed were due to not drinking enough liquid, I realized that I have urinary retention, a common problem with M.S. patients, caused by a bladder that basically fights against emptying, called neurogenic bladder.

When the bladder keeps a pool of urine inside all the time, infection is inevitable, especially in women, no matter how fastidious one's bathroom hygiene....

And yes, of course I tried cranberry juice; I drank nothing but cranberry juice, at least 1/2 gallon a day, along with many, many cranberry tablets daily, for months on end, literally. It didn't make any difference at all, except that I gained weight from all the juice. Before I got MS, cranberry juice was all I needed for my then rare bouts of cystitis. Presumably my bladder was emptying normally then.

Anyway, it turns out I needed to mechanically empty my bladder by self-catheterizing, frequently emptying the residual urine out with a little tube. As a (retired) midwife as well as a female, the procedure was easy even the first time, but it still wasn't enough to keep infection away for long. So I had to resort to daily preventive antibiotics, specifically Augmentin, which has been working fine, but is a little hard on my stomach.

I hope to switch to d-Mannose, a healthier alternative to antibiotics in treating urinary tract infections (UTI's). But before I can do that, I need to get some labs done to see how I'm doing, and that'll have to wait, because like more and more people, I'm flat broke, cupboard bare, up to my eyebrows in debt, etc. I truly can't work and have no health insurance, so I can't afford to get labs or any other tests done for now unless it's a life-and-death emergency. (I do have some income, but it goes to pay back taxes, which means that I don't qualify for any medical programs.)

But on the up side, last month I finally finished my application for disability (WHEW!), and have reason to hope that I'll eventually be approved, which will get me Medicare, so I can finally see a urologist, among other things.

Anyway, the self-cath routine was no problem at all until something else happened.... a stupid accident that is rooted in my total inability to multitask, another common M.S. symptom.

You're not going to believe this, but I got hurt trying to do an isometric exercise. Seriously. (Talk about lame...)

To ease mild bilateral tendinitis in my arms, my doctor suggested an exercise in which you hold your hands together and try to twist one hand while resisting with the other one. Well, I did the twisting part really well, but I must have forgotten to resist, because something went pop and I knew I'd messed up my right wrist. Doh!

This was over 3 months ago, and after zero improvement (despite wearing a brace and taking my usual anti-inflammatories), I finally had an MRI done a few weeks ago (another reason I'm broke). Diagnosis: torn tendons, a lump on the bone, etc. Of course I'm supposed to see a hand surgeon, yet another thing that'll have to wait.

Meanwhile, I still wear the wrist brace all the time. When I take it off (like to wash my hands, or to wash it), I really have to remember to hold my wrist very, very still. If I forget and try to flex it, which sometimes happens because I space out easily, there's this very painful "popping" sensation, accompanied by intense burning that lasts and lasts. Not fun at all, and not conducive to healing.

So to get back to the initial subject, I can't self-cath until this wrist thing heals or is surgically repaired because self-catheterizing requires acutely flexing both wrists. Like I said, I'm on antibiotics anyway so hopefully that'll cover me.

Actually, the only thing I'm really worried about is that I've been out of LDN for a couple of days so far. Yikes!

Even though it's very cheap (about $1 a day), I was too broke to reorder it until this morning. I borrowed some money from some friends yesterday evening, (thank you Johnny and Sara!), so hopefully my refill will arrive soon. I get my LDN from The Compounder Pharmacy in Aurora, Illinois ; they're one of the few compounding pharmacies that has many years of experience successfully compounding LDN, and in my experience they're always dependable, prompt, and reasonably-priced.

The thing is, the only other time I ran out of LDN, about 3 years ago, I developed a horrific relapse, which left me with chronic labyrinthitis, for which I see an oto-neurologist and still have to take Phenergan daily. The nausea from the labyrinthitis somehow led me to drink a lot less liquid, which didn't help my bladder problems...

Obviously I'm hoping that nothing dramatic will happen this time; LDN can't help balance my immune system if I can't take it...
Oh, and it's July in Texas, which should speak for itself.

M.S. patients are almost all heat-intolerant. For many of us, that means no hot bubble baths, no getting into hot cars, no lounging in a hot tub, certainly no saunas, ....I pretty much hibernate in the air conditioning for almost 6 months out of the year. I take a bottle of iced water and sometimes ice packs when I go out.

By the way, they used to do a "hot bath test" to diagnose MS.

So exactly how does too much heat affect the typical MS patient?

For most of us, we can count on increased symptoms, temporarily, such as: profound fatigue and weakness, numbness in the extremities, decreased cognitive function, slurred speech, blurred vision (known as Uhthoff’s sign), and/or tremor.

I have a friend who's had MS for decades, and although she doesn't drink alcohol, she's been presumed to be intoxicated in public several times because she simply got too hot. It's easy to see how it can happen- she was staggering, her speech was slurred, and she couldn't even write legibly, so she was treated like a drunk. The police were called on at least three different occasions that I know of, before she finally got a Medic-Alert bracelet.

Personally, I carry an M.S. I.D. card, officially identifying me as an MS patient, and describing possible symptoms; on the back of the card, it says, "The person named on this card has Multiple Sclerosis and may have any or all of the following symptoms:
•Loss of balance or coordination
•Difficulty walking or writing
•Numbness or partial paralysis
•Double or blurred vision
• Slurred speech
•Extreme fatigue

Meanwhile, I have dreams about living in a snowy place... it was 105F here yesterday.

But l am unceasingly grateful for air conditioning and the electricity to run it, for clean cold water to drink and crushed ice to munch, and especially for my supportive friends and family who won't even let me get into a hot car.

Things are actually a lot better for me, lifestyle-wise, than when I was diagnosed with MS in 2003. I was living alone out in the country with no A/C (not even in the truck), and no running water at all. Barton Springs, Austin's famous spring-fed pool, was a Godsend for me then; I'd swim my slow laps in the icy water and it'd keep me cool for hours afterward.

Blessed Barton Springs, a brisk 68F year-round.
Because of my deteriorating spine, I can't make the walk down to the Springs anymore, but maybe when my wrist heals (and I win the Lotto), I can get a little wheelchair and roll myself down to the pool...

Wow, I really didn't mean to complain so much, but, you know, shit happens.

*If you're interested in d-Mannose, it's a naturally-occurring simple sugar that appears to be a safe, practical alternative for the treatment of urinary tract infections (UTI’s). It's is absorbed eight times slower than glucose, and when ingested, is not converted to glycogen or stored in the liver, but rather goes directly to the blood stream from the upper GI tract. So d-Mannose is mostly filtered through the kidneys and routed to the bladder.

The bladder lining is comprised of polysaccharide molecules. Finger-like projections on the cell surface of E. coli bacteria adhere to these molecules, initiating an infection. In the presence of d-Mannose, E. coli attaches to the d-Mannose molecules instead, coating the bacteria which forms a complex which is expelled when you pee. So basically d-Mannose removes bad bacteria by encapsulating it.

What I'm Learning

Chapter ONE: Regarding MULTI-TASKING

Background: I was working in a busy family physician's office for years before I developed MS, and had already noticed some relatively mild cognitive problems before I was diagnosed, and I'd attributed the difficulties to chronic, severe sleep deprivation secondary to spinal pain, as well as ageing (I was 53).

In terms of my work itself, since I was salaried it didn't really matter to anyone if it took me longer (and longer) to get it all done, and I loved my job; I was the medical coder, in charge of medical records, prescription refill requests, writing most of letters for the doc, often answering the phone, explaining things to staff members & patients, etc. I was also responsible for keeping the doc as well-informed as possible by researching, screening & printing relevant daily medical news, and I still do that for her asof October, 2007. Jugglers at "Eeyore's Birthday Party" in Pease Park, 2002
What ultimately made it impossible for me to stay in my job was my increasing inability to "multi-task"; I used to have about 12 things in the air at once, juggling them almost flawlessly, but with MS I found I just couldn't manage it the same way anymore. I don't know if my IQ went down, but I think it got narrower, if you can imagine that...

It's weird; I used to thrive on all that frantic activity & responsibility, but after MS changed my ability to multitask, I had to "retire" early.

While I was (and am still) able to complete any one task well (as long as there are no interruptions), multi-tasking used to be my strong point, and now it's history. And, unfortunately, in my former job, multi-tasking was essential, and it's harder when you get interrupted dozens of times every single day as I did; each interruption usually necessitated my starting over (and over and over!) at whatever I was working on when I got interrupted, which was of course very frustrating and time-consuming; I even tried working at night and on weekends when the office is quiet, but for various reasons that didn't work either. (Plus the office was WAY too warm for me, ice packs and all...)

Anyway, I've learned a few things in the last 4 years since diagnosis, like

1. Whenever possible, I avoid multi-tasking in the first place, because I know it's unlikely to work out. I try to arrange to do (or to focus on) one thing at a time, do it well, finish it and move on. It may seem less efficient, but for me, it's best.

2. I no longer try to just mentally shut out distractions while I'm struggling with a task that demands focus- I find it better to eliminate the distractions; basically that just means I turn off the (background) TV or music if it's distracting me and making things harder- when I'm trying to focus on something, silence is my new friend.

3. My cell phone is ever-present and always charged, and I've recently made friends with the alarm clock/reminder feature; I set reminder timers for myself all the time now, because when I get engrossed in something, I lose all track of time, and with the alarm set, I can relax. I found that just leaving myself little notes didn't help much, because I usually forgot to look at them. But I do keep a schedule on my computer and I refer to that every day unless I'm stuck in bed, which is rare and always due to spinal problems unrelated to MS. I don't try to hold too much in my head, because the effort is distracting, and distraction is best avoided.

4. Speaking of the cellphone, I've found that, since I got MS, talking on the phone is an annoyance; I can pay attention to people much more effectively when they're present. Actually, I haven't really been that comfortable yakking on the phone in the first place, but it's worse now. I think it's because I can't do anything else at the same time, and I get impatient, vaguely distracted by my urge to get the call over with, no matter who it is. And I never talk on the phone if I'm trying to do anything else (especially drive!)...it just doesn't work out. And I've flat out told most of my friends & family that talking on the phone is difficult, often even irritating for me, that it's nothing personal, but that I appreciate calls kept brief, prefer email or, better, seeing folks in person.

5. I keep my mind challenged in various ways by researching or studying things that interest me. Like one day for no particular reason I decided to memorize the Greek alphabet, and to recite it every day until I could literally rattle it off backwards. It may seem silly, but I devise these little tests and tasks for myself so that I won't be the last to notice that I'm losing more of my marbles and that they're rolling under the refrigerator...I channel a lot of this BS into my blogs....

6. The cooler it is, the smarter I am; I can't even think straight if I'm too hot.