Ticking Right Along

The exhaustion has passed - thank goodness. I still feel rather tired, but I'm sure that's just because I haven't been working out or walking as much as usual. When back in the regular swing of things I'm sure I'll feel better.

Happily, I think my vision has maintained itself at 85%. While a little greedy in hoping that it would return to 100%, I don't think that will happen. While I miss a few things (how deep the water is in the wading pool, the subtle differences between similar flowers) I rejoice in the many things that have returned (whole airplanes, birds, turn signals, and so on). While I quake in my shoes every time my vision diminishes; like lights becoming extra sparkly, or greyness beginning to descend. I'm starting to understand that if these temporary setbacks last less than 24 hours, I'm not to worry. They're "pseudo" relapses. Following is an excerpt from MedHelp's website:

Pseudo-Exacerbations (Pseudo-Relapse)

People with an early and very mild course may be entirely without symptoms at all most of the time. If they become overheated or extremely fatigued they will notice the appearance of symptoms they have had before. If these symptoms last less than a day, then the sources that I have read would refer to this appearance of symptoms as a "pseudo-exacerbation" or a false relapse. For people with more constant symptoms, they may also notice marked variations of the intensity of symptoms or re-appearance of old symptoms with over-heating and overexertion/fatigue. These episodes are typically brief and resolve with cooling off or resting.  These would also be considered to be pseudo-exacerbations

As I haven't been sleeping well lately, I suppose that a fair portion of my pseudo-relapse can be attributed to being constantly overtired. Recently, I've been laying awake wondering about who I can find to take care of the boys for a couple of weeks while Liz is recovering from her long-awaited surgery. It is weighing heavily on me. I don't know what we'll do if we don't find someone soon.

I continue to be in complete denial about possibly having MS. Really, they (traditional medicine) will have to prove themselves. Even then, I may not believe it. Of course I will follow their recommendations and behave myself, but I won't be a meek and mild little lamb accepting everything. Life will carry on to the best of my abilities and I will steadfastly refuse to let MS own me. Also, I have high expectations of my treatments with Dr Blaney. While I understand he may not be able to cure what ails me, he may at least be able to get my immune system back in line to the point where it won't over-react too much and leave my body alone. Mentally, I beat myself up enough - I don't need my immune system beating me up as well. Ha!

Coming Down

I don't know what I'm supposed to feel like when I'm coming off the steroids. This evening I can barely manage the energy to put the dinner dishes on the counter, let alone wash them. Is this normal? I have no idea.

Naively, I thought I'd feel strong after the IV treatment; full of energy, ready to conquer the world. Instead, today I'm feeling overheated, irritable, tired, hungry and small. Small in that I just want to curl up in a corner. Not even with a good book, just curl up and rest. With so many books beckoning, a little flutter of guilt tugs at my heart. Especially with the Sechelt Festival of the Written Arts fast approaching.

Well, I'm going to follow my body's cues and crawl into bed.

Steroid Mama - Look Out!

Okay, usually I'm pretty stable, I don't rock the boat and I'm not one to make snide comments, at least not out loud. Sure, the comments populating my brain are just like anyone else's. Sometimes short-tempered, perhaps a little crude, definitely not all roses and daisies. But while on my five day mega dose of intravenous steroids the filter that normally prevents outbursts, rude comments and so on has in effect been removed.

Last night was the final night of my IV treatments and I just couldn't help myself. When one of the nurses in the emergency department called out to the other nurses "Has anyone seen the man with chest pains?" I wondered aloud about how they could "lose" him and wouldn't it be a terrible thing if he had collapsed and died? I don't think I was quite that articulate, but that was the gist of what I was trying to get across. Eek. I think my lack of comment-filter was contagious. A very dear friend keeping me company got in her fair share of comments too. When a very speedy nurse zipped by with a patient straggling far behind, she called out to "hurry up - she's quick." Ha! I'm glad we were there to liven the place up a little.

Some of my comments this week have been terrible, I definitely have some apologies to make. For example, I replied with "bullshit" when Daryle apologized, somewhat insincerely for snapping at me one evening. I wonder who else I've upset? Most likely some people at the office - I'm so sorry - I'll apologize in person when I stop by during the coming week. I've also likely ticked off every nurse in the emergency department at the Delta Hospital. I questioned each and every one of them about the medication they were administering. I don't think I can be blamed for that one though, the very first treatment was almost given with the wrong prescription medication. Yikes! Then I complained about bubbles in the IV line, then about how they were administering the saline flush, then about how long I had to wait to "just get hooked up" with my drip. No wonder one of the nurses administered the drip at twice the normal rate the other night. Ouch!!!! My arm was so sore I could hardly drive home.

Speaking of driving home. My sight was set on super sensitive, ultra-bright piercing x-ray vision. The traffic lights jumped out at me, the flowers were psychedelically bright and to top it all off I had ants in my pants. I could not, for the life of me, sit still. Fidget, seat-dance, wiggle. You name it, I moved in any way I possible could. Must have looked very creepy driving home last night, a monster grin across my face after having the IV paraphernalia removed and dancing to Fun's "Some Nights."

However, in retrospect, I'm glad that I had the IV steroid treatment done. My vision is significantly better. For the first time this season I've seen a small, fast bird, cottonwood puffs floating by. I'm looking forward to seeing the rain again. I even saw the colour on a hawk's belly as it flew by. My guess is that my vision has returned to 85% of what it was to begin with. Not bad. Not fantastic, but I'll take whatever I can get. At least I can drive and I'm able to make out all of the colours again.

Choice to Make: Traditional vs Alternative

Wednesday, July 4th, 2012

This morning Mom and I went to meet with Dr. Blaney at the Stillpoint Project. We spoke about my symptoms, had an assessment of where I'm at and he even did a small treatment on my left hand where I've noticed a little bit of numbness on my pointer finger.

He explained the different approaches to MS by the traditional medical community and the Marshall Protocol, of which he follows with his own adaptations. It appears that the medical community treats the symptoms, while the MP treats the body as a whole preferably before the onset of symptoms. He explained further that minocycline is part of his treatment (so I wouldn't be taking my 50/50 chances through the trial) and that the importance of MRIs is overstated. Our brains are dynamic, and the lesions my heal and/or pop up elsewhere. Keeping track of them just for the sake of tracking them doesn't actually aid in the healing process. He was also encouraged to be treating me at such an early stage of possible MS, prior to the onset of irreversible nerve damage.

I left his office optimistic that I'll be in good, if expensive, hands.

Although most members of my family will be supportive of my decision to seek alternative care, I know there are certain people very close to me that look down on alternative medical treatment. They hold a very common view its practitioners with derision and minimize any positive results they hear about. I don't care. I need to look after myself, and to be honest, the mainstream medical community doesn't appear to have my best health interests at heart. I've just finished reading an article in Maclean's by Anne Kingston on Monday, June 25, 2012 about how Canada has let down MS sufferers. How sad that decisions regarding research and funding basically come down to political views and pressure from drug companies, rather than consideration of science or caring for a considerable sized group of Canadians suffering with MS. Frankly, I don't have time to wait for the medical community to get their heads out of their rear-ends. Pardon the crassness in my language - I'm not about to sit quietly and wait for the slowly turning wheels of medicine to help me.

After my meeting with Dr Blaney, Mom and I went to the Delta Hospital for #2 of my IV treatments. 3 1/2 painful hours later I was finally able to head to the office. The IV treatment is supposed to take no longer than 1 1/2 hours, so both Mom and I were terribly frustrated with having to wait so long. The IV was already in my arm, I just needed someone to hook me up and set up the drip. Crikey. When it turned out that my file had been overlooked, everyone who spoke to me pointed the finger of blame at someone else. Except that is, for the cranky nurse whom I inconvenienced by needing her to set me up. She just did her job in silence, then abandoned me.

After our trip to the hospital, Mom dropped me off at the office. I'm sure she was relieved to finally be rid of me. My temper had been tested at the hospital and quite frankly I don't think I was very pleasant to be around. I had initially wanted to spend the entire day at work, but I suppose life got in the way. Sorry Work. However, I gathered information, did my inventory, set up some Payables and piled a heap of files in my bag to take home.

MS Clinic Day

Tuesday, July 3rd, 2012

Well, what a day of ups and downs!

Mom accompanied me on my trip to UBC for my day of appointments at the MS Clinic. Thank goodness, I don't think I could have handled going through it all on my own.

In the morning we met with Dr Rachel and Dr Traboulsee, my neurologist. Refreshingly, they were pleasant, personable and relaxed when meeting with me. We performed more tests: reflexes, eye movement, peripheral vision, temperature sensation, vibration sensation (c'mon big toes - cooperate), balance and so on. With my MRI images on screen, Dr Traboulsee pointed out the white matter lesions in my brain and explained what there were and how they would ultimately effect me. He also pointed out that we don't have imaging of my spine or legs, and that these images should be requested in my next year's MRI. Interesting.

He also explained that having optic neuritis doesn't immediately indicate that I have MS. He said that it could be a one-off, the beginning of relapsing-remitting MS or the beginning of progressive MS. My odds, apparently, are 80% that MS will develop and 20% that it won't. I'm clinging to the 20% life preserver with all my strength.

Dr Traboulsee also recommended that I go on a five day intravenous treatment to bring back as much of my vision as possible. In response to my comment that I had been told that it was too late to begin steroid treatment he said "Can you see as well as you did before this episode? If you can't then it is not too late to try."

From the meeting with Dr Rachel and Dr Traboulsee we met with Leila, who tried to explain and encourage me to participate in a clinic trial for minocycline, a medication that it is hoped will prevent MS from settling in fully. The trial is available to patients in my situation that haven't had the second MS episode yet. 50/50 chance of receiving the medication and MRI images every three months. Very enticing. Those are two pretty big carrots to be dangling in from of a possible MS patient.

Then we met with nurse Cecelia to set up the IV treatment at a hospital closer to home. She also wanted to clarify how much vitamin D Dr Traboulsee had recommended.

Okay, time for a break. Let's go look for some lunch. Enticed by Cecelia's mention of burritos, we went searching in the "village" a block away. Eventually, we found the restaurant, and it was worth the hunt!! Yummy! Spicy meat, fresh cilantro salsa, freshly made guacamole. Let me say it again - Yummy!

Then back to reality - popped into the lap at UBC to have my blood drawn and tested for neuromyelitis optica, also known as Devic's Disease. I'm hoping that this isn't what happening with my sight. It's a dreadful disease.

Ahem, sorry to go off on a tangent. Back up my series of appointments. I'd been dreading meeting with Dr Anderson, feeling that he's be his usual cold-fish unpersonable self. But today he was all affability and friendliness. Performed the following tests: colour plates, gradient (black to light grey), distance, visual eye exam, etc. He said without any hesitation that I'm able to drive again and confirmed our follow-up appointment at St Paul's Hospital in the autumn. If I could have done back-flips down the hallway I would have. I was so happy to have my driving freedom back!

After our long day at UBC Mom convinced me to begin my steroid treatment that had been arranged at Delta Hospital. Ick. Really, this was the last thing I felt like doing. I was absolutely exhausted. However, no time like the present, so off we went. Afterwards, we dropped off my prescription for some sleeping pills and picked up a quick dinner salad from Subway. After dinner Mom and I popped up to pick up the prescription.

After a couple of quick phone calls I collapsed into bed.