Catching Up

I kept meaning to get to the next installment of my diagnosis story and to write some updates regarding my condition, new treatments and upcoming procedures. And the next thing I knew, five months had passed. How time flies.

Working full time again has been more of a struggle than anticipated. Pushing my body to work harder, and to keep working after it has reached its limit, has meant the return of several symptoms. Most notably, the extreme fatigue.

Let's talk about MS fatigue for a moment. To quote Judi Bachrach, fellow MS patient and author who perfectly illustrates this topic: "Fatigue is by far the most common and misunderstood of all MS symptoms. "Fatigue" is a common word denoting a common experience shared by everyone; however the word doesn't truly describe this totally overwhelming and paralyzing symptom of MS. "Multi-system failure" more accurately captures what happens when all physical, emotional and cognitive functioning shuts down with the total depletion of any energy available. You could drop things, fall down, stumble or be dizzy, be unable to think or remember or even be able to talk clearly, or shed tears of unexplained frustration or anger. With all this, you would have an urgent need to lie down because there is nothing else you can do. That is multi-system failure, usually referred to as MS fatigue."

MS fatigue is a symptom I experience on an almost daily basis. Spending entire days on my feet dealing with the often grumpy and demanding consumer public, makes this a particularly difficult symptom to cope with.

In addition to the fatigue, I've seen a return of the muscle weakness in my hands, arms and legs making tasks like washing my hair, brushing my teeth and driving my car arduous and sometimes daunting chores. A busy day at the office doesn't always afford the opportunity to sit down, and I often find my legs burning, aching and becoming shaky as a run back and forth through the office assisting patients. Certain repairs on eyewear have also become painful to perform, though I do them anyway either because I'm alone or because I can't stand the embarrassment of having to ask for help to perform one of the most basic functions of my job.

Five months of this has taken quite a toll, but with no end in sight I am constantly brainstorming on ways to simplify and adjust. So far, I haven't figured out much. Between work and running a household (meal prep, laundry, keeping the house tidy and stocked, etc.) I seldom have the energy for anything else.

As a result, I've had to make some choices and give up some things I rather wouldn't have. I haven't done yoga or been to the gym since July and I've had to give up belly dancing, which breaks my heart beyond words. I don't pick up my camera nearly as much as I used to and I haven't touched an embroidery needle in months. And writing....I really miss writing and my blogs. As for my social life....if found, please return.

It's been difficult to set these things aside. They are all things that I love and are part of who I am. I miss the luxury and the freedom to be myself...to go to the gym when I want or go to belly dance class or practice at home. I miss having the mental energy and cognitive functioning to write and blog. I miss taking photos. I miss stitching. I miss my friends. I miss going out with my husband. I miss me.

On top of everything, we are smack dab in the middle of the holidays. I love this time of year, but I am feeling deprived of enjoying it. The holidays come with more to do which, while they are all things I typically enjoy doing (gift shopping, Christmas cards, decorating, baking, going to parties), I'm far too exhausted to even think about any of it. Christmas is in two weeks and I haven't had it in me to even put up our tree. And Christmas cards....I love doing my Christmas cards! But I'm afraid it just may not happen this year, which makes me feel like the worst friend/daughter/great-niece/cousin/sister on the planet. Writing out a Christmas card may not sound like the most daunting task, but it is with MS fatigue. I worry that others might not realize that and take my lack of reaching out this holiday personally. But I suppose there's nothing I can do about those folks. I can only do what I can do.

In an attempt for some reprieve, I applied for an intermittent FMLA leave at work. This would grant me the opportunity to reduce my working hours as needed while still protecting my full-time employee status and thus allowing me to maintain our health insurance coverage.

Yesterday, this little gem arrived in the mail:

(click image to enlarge)

Balls.

Well, there goes that. Needless to say, I was pretty upset by the notice that I do not qualify for FMLA at this time. Though surprisingly, my distress was short-lived. I'm extremely disappointed as I sincerely need some time to rest, recoup and take a little better care of myself, both physically and mentally. But I think I am at a point where I am just too exhausted to be upset; I don't have the energy to spare. And there isn't a damn thing I can do about it anyway. So while I wish circumstances could be different, all I can do at this point is continue to plug along, hope for the best and remember to acknowledge and count my blessings.

The fact is, despite my struggles and challenges, I have much to be grateful for. So much. I also believe that these challenges have been put before me for a reason and I hope to learn what I am meant to learn from them. And while it has been much less than ideal, I have so far been able to do what I have to do. I am grateful for the fact that this disease has not yet taken my ability to work away from me and is still granting me the ability to be a participant in life.

In the meantime, I will continue to do what I can and do my best, and pray for patience and understanding from those around me. I am confident I will devise a way to make participating in the things I love, in life, a little easier.

Because Inquiring Minds Want To Know....

A brief update on the insurance saga…

First, I want to take the opportunity to express my deepest appreciation to all my friends and family who have given us their concern and support through this little health insurance crisis. It’s been a hellish month, but the phone calls and late night texting and emails of everyone checking in with us for situation updates and to simply inquire how we were doing have overwhelmed me with gratitude and provided much comfort. Thanks for caring. Thanks for listening. You’ve made more of a difference than you could possibly know.

That being said, I am pleased (and relieved as hell) to report that a solution has been found. I was able to plead my case to the higher ups at my company and they agreed to reinstate my full-time status (thus making me eligible for benefits), provided I began working full time hours immediately. This proved a bit of a challenge, but my manager and the manager at another location have helped me to obtain the necessary amount of hours required to maintain full-time status. For this, I am extremely grateful to both of them.

There was a small waiting period (while the company data base was updated), but I was able to enroll for benefits last week and I received confirmation on Friday that my enrollment was successful. Now we’re just waiting for our information to be updated with the insurance company and for our cards to arrive.

Whew.

I feel like I can breathe once more. Those three weeks of being un-insured were extraordinarily daunting; I had no idea if we would find any kind of resolution or be able to get coverage before our medications ran out. And what if we didn’t? So many unanswered questions, so many what if’s, so many people telling me not to get my hopes up; I was prepared for the worst.

Fortunately, things worked out. I feel very fortunate that my company was willing to take into account my many years of service and the contributions I have made and bend the rules to ensure both my continued employment and my well-being. These days, I think that's probably pretty rare.

Of course, this comes at the price of working full-time again. Going from 2 or 3 days a week to a full 5 has been a bit grueling; my body is just not able to take as much as it once did. But, we must do what we must do. I am just grateful that there is something I can do to ensure that Nick and I can continue to treat our conditions and receive the health care that we both need and deserve. We'll make this work.

In the meantime, we’re readjusting. Nick has once again risen gloriously to the challenge and has been extraordinarily helpful around the house and with meal preparations and running errands (grocery shopping, impromptu ice cream cravings, etc.). I am so grateful for both his willingness to step up and for his notable talents in the domestic arts. Thank you, my love. I love you so much!

As for me, I'm hanging in there. I’ve had to make some compromises with my exercise routine and social activities; I simply don’t have the energy to do it all. But I am adjusting and I try to reserve a little time and as much energy as I can for the things I enjoy and a little fun and socializing too; I refuse to let life become nothing but work and sleep. At the same time, I need to remember to be kind to myself and to say 'no' and rest my body when I need to. This is a difficult concept for me, one that I am continually working on.

I’m determined to keep swimming and keep smiling. I put as much effort as I can into remaining positive and counting my blessings each day. I know that even though this situation is kinda crap, we still have much to be grateful for.

Part 9: Testing 1..2..3

For the first time in over a year and a half, I was feeling a sense of relief. Granted, it was small and buried under a ginormous pile of anxiety and trepidation, but I felt it all the same. I was reassured that I was finally in the hands of a capable and caring doctor and I believed that we were on the path to some answers. And so began the in-depth diagnostic testing.

First up, an MRI. An MRI (Magnetic Resonance Imaging) is sort of like an x-ray , but radio frequencies and electromagnetic fields are used rather than radiation. And unlike an x-ray, an MRI is able to produce detailed images of soft tissues (like the brain, spinal tissues, joint tissues, various organs, etc.). There’s some other science-y stuff about photons, neutrons and hydrogen atoms, and how the magnetic field and radio frequencies align them in such a way so as to create a detailed image. But who really cares about that? I just wanted to know how the heck this procedure was going affect me.

I had never undergone any sort of medical testing before, short of a throat swab or a blood draw, so this was entirely new ground for me. My only references for things like MRI’s were medical dramas like ER and House MD. Not the best reference for medical procedures, as nothing ever goes smoothly on these kinds of shows (because it wouldn’t be a drama unless someone exploded in an MRI machine, now would it?). Needless to say, I was having a fair bit of anxiety about the unknown of this procedure.

Dr. M. assured me the procedure was completely painless and without side effects. The contrast dye to be used was not associated with any adverse reactions, I wouldn’t have to fast and I would even be able to wear my own clothes as long as they had no metal components (no wire bra, zippers, snaps, etc.). She did warn that due to the narrow size of the scanning chamber, patients with claustrophobia are usually advised to take some kind of sedative prior to the procedure. Was I claustrophobic? I had no idea, but Dr. M. and I both agreed that a mild sedative certainly couldn’t hurt.

The MRI was scheduled for 6:00am on a Friday morning, December 15th. I took my big-ass Valium first thing upon waking and then proceeded to get dressed; Hello Kitty pajama pants seemed appropriate for the occasion. The left side of my body was still fairly numb and achy, but I had regained some use of my left hand and I was able to dress myself without help or a single expletive for the first time since Thanksgiving.

By the time we arrived at the imaging center, I could feel the Valium beginning to work its magic. I was still a little nervous, but I was feeling kinda light headed and tired….like I just wanted to lay down. Conveniently, there was a nice scanning table waiting for me.

After filling out the typical paper work, I was escorted back to the scanning room by a really sweet technician. I was surprised to find the scanning room to be much less clinical than I had expected; wood floors, wood cupboards and pretty striped wallpaper. The MRI machine didn’t look as nearly as scary as I had imagined either. The technician placed me down on the scanning table and covered me with a toasty warm blanket, tucking me in snug all around. She then told me she was going to cover my eyes. I expected a dark piece of cloth or maybe those things they give you in tanning beds. Instead she placed a lavender-scented herbal eye pack gently over my eyes. Wow, serious? This was quickly becoming less like Dr. House and more like preparation for a spa treatment.

The technician also placed noise-canceling headphones over my ears, which would help drown out the noise of the machine and also allow her to communicate with me. She also told me she could feed the radio through my headphones and asked which station I would like. X96, please!

The scanning table was slid into the scanning chamber and I was ready to go. A series of scans were done, the dye was injected and then the scans were performed again. It was pretty loud, despite the headphones, and the rhythmic pulsing noise from the machine made the table underneath me vibrate. There was nothing to do but lay there and chill, so that’s what I did. Every so often the technician would come through my headphones, checking that I was okay and letting me know the length of the next scan. I think I even nodded off at one point.

The entire procedure took just over an hour. It was a lot less frightening than I had imagined and more like a really boring portrait sitting at Olan Mills. And that’s pretty much what an MRI is, minus the annoying family members and cheesy backdrops. And before I knew it, I was done. Nick was waiting for me on the other side of the glass with the technician; he had watched me through the entire process. And even though I was feeling relatively calm throughout the procedure and surprised by the ease of it, it was still comforting to know that Nick was right there, watching every moment.

Four days later, we met with Dr. M to discuss the results of the MRI. She showed us the scans of my brain and spinal cord, which at first glance were pretty cool looking, in my opinion. It’s not often one gets to see the inside of their skull. But then she pointed out the numerous white spots that appeared throughout the brain and spine and explained that these white spots were actually lesions, which is consistent with myelin damage (myelin being the protective sheath surrounding the nerves in the brain and spinal cord). When the myelin is damaged, this causes inflammation and injury to the nerve and those surrounding it. This, in turn, slows or blocks nerve signals that control muscle coordination, strength, sensation, hearing, pain receptors, etc. With a sad and apologetic expression on her face, she told me that this is very indicative of Multiple Sclerosis.

This didn’t come as a surprise to me; Dr. M. had told me she highly suspected MS from the very beginning. I was honestly feeling a bit relieved that she didn’t find a brain tumor or something, though at the same time I think I had slipped into a mild state of astonishment. As I sat there and looked at those images of my brain…my broken, damaged brain, all I can remember saying in response was “okay”.

Dr. M. went on to explain that approximately 30 lesions were found on my brain and an additional 6 on the spinal cord. The numerous areas of damage, and the areas of the brain and spine in which they were located, was a definitive explanation for the loss of function I had been experiencing and why they were occurring in certain areas of the body.

Dr. M. reiterated again that this was most consistent with Multiple Sclerosis, but she wanted to run some blood work and a lumbar puncture (spinal tap) to be completely thorough and rule out any question as to my condition.

Oh man, a spinal tap? *sigh* I appreciated her desire to be thorough and absolutely sure about my diagnosis, I really did. But a spinal tap? Ugh. I’d heard plenty of horror stories about spinal taps, and it didn’t seem likely this procedure would include any warm blankets or aroma-therapeutic components.

Once again, Dr. M. took the time to reassure me. She acknowledged that she’s heard the horror stories herself, but that she’s literally performed hundreds of these and has never once had a patient experience a problem. However, she also acknowledged that I’ve already been through a lot and I’ve been given an enormous amount to process. Christmas was less than a week away, and she suggested that I step away from this for a bit and wait until after the holidays to have the spinal tap done. I was inclined to agree. I sincerely appreciated her understanding of how difficult this was for me and her concern for my well-being.

I honestly didn’t know what to think at this point. It sounded fairly certain that I did, in fact, have Multiple Sclerosis. What that meant for me and my future, I didn’t know. And right then, I didn’t really want to know. I did not yet have a final diagnosis, and I was content to rest in a little bubble of denial and hope that perhaps the blood work and spinal tap would reveal some new evidence that would blow Dr. M.’s theory right out of the water.

Deep down, I knew this wasn’t true. Everything fit and now we had visual confirmation of my MS-addled brain. But I just wasn’t ready to face it. Not at Christmas. The best I could hope for was try and put this out of my mind and attempt to enjoy the holidays with my friends and family as best I could. Though with the knowledge I now possessed, a festive holiday spirit seemed less than likely.

The spinal tap was scheduled for the 17th of January, 2007.

*Note: No stunt brains were used in the making of this post. The images above are really me. Those are the actual images of my brain from the MRI discussed in this post. It really brings out my eyes, don't ya think?

A Little Detour...

It’s been a while since I’ve updated, and the next installment of the diagnosis saga is coming soon. But I would like to take a little detour to talk about one of the tough realities of living with a chronic disease, one we are facing right now.

Health insurance.

For the past twelve months, Nick has carried our health insurance through his employer. And it’s been WONDERFUL! The coverage is amazing and our very expensive medications have never been so affordable. Additionally, the company pays the employee premium, so we are only responsible to pay the additional premium for spouse coverage. After so many years of crap coverage and serious debt, this has been an incredible blessing and a huge relief of major stress.

Four days ago, however, Nick’s employer informed the company that as of July 1st, this benefit coverage would be discontinued in lieu of an HSA plan. Now an HSA plan does provide some insurance coverage for basic, routine health care….annual physicals, office visits, etc. But there is very minimal coverage for specialist care and prescription drugs. For two people living with very expensive chronic diseases that require a lot of care and medication, an HSA plan is not a realistic option. But it is now the only option the company is offering. And we are only receiving a week’s notice.

P.A.N.I.C.

Just to put this situation into perspective, let’s look at the details of the new HSA plan that would apply specifically to us. Namely, prescription drugs. Under the plan, Tier 3 drugs (which is usually where our medications are classified) are covered at 50%. The current cost for a 30 day supply of my injectable MS modifying drug is $2000. So it would cost me $1000 a month to stay on treatment.

Now for those who don’t know, Nick has Hemophilia. He was diagnosed at birth and it is a life-long chronic condition that comes with a lot of pain and can be fairly disabling. The IV medication required to treat this disease is obscenely expensive and also extremely necessary. Nick literally cannot live without this medication. The average cost for 12 doses of this medication is (are you sitting down?) $33,000. We couldn’t afford 10% of that, let alone 50%. Add it all up and times that by a year’s worth and you come up with a number that is more than what both of us make in two years.

HSA plans are terrific for the average healthy individual. It covers all your basic, routine care and the plan costs are very low for both employer and employee. For people with chronic illnesses, however, it is clearly unrealistic.

We have been informed that Cobra is not an option, since the company is not eliminating coverage completely and is offering an alternative plan. So technically we are not losing coverage, though the fact that we cannot afford the new coverage is irrelevant.

Our only option, therefore, is for me to go back to work full-time and pick up benefits from my employer. Easier said than done. In order to be re-classified as a full-time employee (and therefore be eligible for benefits) I must first work full –time hours for two consecutive quarters. This means I would not be eligible for benefits until about February of 2011. The insurance change-over at Nick’s work happens in three days.

The phrase rhymes with “clucking bell”.

Given the outrageously short time frame to sort this all out, I was on the phone to the higher-ups at my company immediately, pleading my case and requesting any sort of exception that could be made under my circumstances. This issue has been escalated all the way up to the VP of our department, and he is supposed to make his decision by Monday. If he approves my request to reinstate my full-time status immediately, we’re good. I can sign up for benefit coverage that, while not as good as what we had before, is still fairly decent. If he denies my request, we have no other choice than to sign up for the HSA plan until I am eligible for benefits next year.

Should this be the unfortunate case, I will have no choice but to discontinue my MS treatment as we simply can’t afford it. Can I live without this treatment? Certainly, though potentially not very well. The additional stress on my body of full-time hours posses its own issues, but without my treatment to help protect me from relapses…..I shudder to think what the next 8 months would hold for me. As for Nick’s medication, the drug manufacturer offers an assistance program for people in our situation. We are hoping we can qualify for this program.

So as we are left to anxiously await our fate over the weekend, relying on the decision of a man whom we have never met, I am pondering how and why we have been landed in this situation once again. This is hardly the first time we’ve been in this boat. Quite the contrary, in fact. As chronic as our diseases are to our bodies, so is the battle for insurance coverage. And each time is more arduous, more traumatic and more emotionally draining than the last. It never ends. And just when things are good, when things are settled and we can finally enjoy a little bit of comfort and peace of mind with our health, the shit once again hits the fan. Living with the physical challenges Nick and I face on a daily basis is burden enough without having to always wonder when the rug will be pulled out from under us yet again.

I can’t help but be struck with a sense of hopelessness. I know that something will work out and Nick, at least, should be able to get his medication. But I am angry that this is happening again; that we must make this choice of who gets medicine and who doesn’t. I’m also fearful about going back to work full-time. Cutting back to part-time has been the best decision for my health. I have been doing so well, the best I have done since being diagnosed with this shitty disease three and a half years ago. But I fear that pushing my body beyond its limits will once again send me down the dark road that is MS relapse. And I’m scared.

This situation is extremely difficult, but it is what it is. It is beyond our control and we will just have to do the best with what we have to work with. I am striving to count my blessings every day and to recognize all the good and the positive in our lives. We really do have much to be grateful for and I am trying to keep my focus there.

We’ll get through this, one way or another.

Part 8: The Light at the End of the Tunnel Might Be a Train

It had now been nearly a month since I had been unable to use my left hand or feel any sensations on the left side of my body. My chest and torso was still feeling constricted and I still couldn’t hear out of my left ear. My entire body continued to feel weak, heavy and numb. I had nearly zero energy and was dizzy most of the time. I was barely functioning.

I wasn’t sure how much longer I could take this. And so, after learning there could be a possible connection between my symptoms and several serious conditions, I decided it was time to see a neurologist. I was hesitant to get potentially dicked around by yet another doctor, but I could no longer hope that this was innocuous and I was fearful that there may be some merit to what I had read online. I hoped to God that there wasn’t, but the fact remained that I was getting worse, not better.

I contacted the neurologist that was recommended to me by my chiropractor. Luckily, her office was able to get me in right away as she had recently moved her practice here from Minnesota and was not yet backlogged with patients.

Nick came with me to the appointment and he held my hand as we sat in the waiting room. Given past history, we were both skeptical and apprehensive about our pending experience. Were we about to get blown off once again? Were we going to be graced with yet another doctor who had no idea what to do? Was I about to go all Russell-Crowe-in-a-hotel-lobby at the utterance of another ‘I don’t know’? We were about to find out.

Dr. M greeted us kindly and escorted us back to an exam room. I immediately felt a positive vibe from her and her gentle tone put me at ease. She listened attentively as I described everything I had been experiencing over the past year and a half, making notes and asking follow-up questions. She then performed an exam, testing my strength, coordination, vision and sensations. She continued to ask questions throughout this process, though she did even more listening.

She confirmed that I had significant weakness in my arms and legs, particularly the left, as well as loss of sensations throughout that side. She also noted poor coordination on the left side as well; when asked to close my eye and touch my fingers to my nose, my right finger landed spot on while my left finger ended up in my eye. This wasn’t really news to me, but it was extremely encouraging to finally get some confirmation and validation from a medical professional.

Then, with a slight wince in her expression and an apologetic tone, she told me that this was all very consistent with Multiple Sclerosis.

I was stunned. And I was stunned that I was stunned. Was I really not prepared to hear this? I suppose part of me was fairly convinced that I couldn’t trust medical information found online and that I was being over emotional and naive to believe any of it. And reading about it online was one thing…it was unconfirmed, uncorroborated; pure speculation. Still, the symptoms fit. And to have that substantiated by a neurologist was a bit of a burst to my bubble of denial.

Dr. M. went on to say that this was not a firm diagnosis and that there are several other conditions that can mimic Multiple Sclerosis; it was important that we run some tests to eliminate all other factors. An MRI was scheduled for the following week and she spent the remainder of the visit describing in detail what that procedure entailed.

As we were about to leave the office, she placed her hand on my shoulder and told me to try not to worry and assured me that we were going to get to the bottom of this. I appreciated this gesture. Obviously, I was going to worry my neurotic little brains out, but it was heartening to hear that she wasn’t going to give up on me or just send me on my way without any answers.

As Nick and I drove home, neither of us was sure what to think. We both agreed that even though this was fairly grim news, it was a positive visit. Dr. M. was kind and seemed to genuinely care. And this was real progress. Follow-up was happening; in-depth diagnostic testing was being done. We were moving ahead.

But where were we heading?

Part 7: Progress, Setbacks and Discoveries (continued)

Stumbling upon the information that the top conditions associated with my symptoms were Transient Ischemic Attacks (mini strokes), a stroke and Multiple Sclerosis was something of a bolt from the blue. This was some pretty serious shit. But surely something of this magnitude would have been easily detected by at least one of the numerous physicians I have seen over the past two years. Wouldn’t it?

As I read through the details of strokes and TIAs, most of the symptoms fit…

Muscle weakness on one side of the body
Numbness or tingling on one side of the body
Changes in sensation (including temperature)
Changes in hearing
Loss of balance
Vertigo and dizziness

It went on to explain that TIAs are a medical emergency. They are warnings that a larger stroke is most likely forthcoming and it was urged to seek medical attention immediately if a TIA was suspected.

I felt a lurch in the pit of my stomach.

Could I have been suffering TIAs all this time? Or worse, a stroke? It was difficult to not panic over this unsubstantiated information, though it appeared to be a potential explanation for what had been happening. I couldn’t help but wonder if my loss of one body function after another was the result of permanent brain damage from one or more strokes and if I was in imminent danger of having another, more massive one.

As I read on, however, there was one main characteristic of a TIA that did not correspond with my saga. While TIA symptoms come on suddenly, they do not last long (from a few minutes to 24 hours) and disappear completely. My symptoms have lingered, each occurrence lasting longer than the one before. With a typical stroke, symptoms come on suddenly and may slowly get worse. That was definitely more in line with what I had been experiencing, but was it really likely that something this significant and this serious could have been missed by so many doctors? Also, this didn’t explain the tightness around my chest or the paralysis.

But what else could it be? Obviously it wasn’t Multiple Sclerosis; I was far too young for something like that. Then again, I seemed awful young to have a stroke. Out of sheer curiosity, and believing that I wouldn’t find any helpful information, I clicked on the WebMD link for details on Multiple Sclerosis...

Tingling
Numbness
Loss of balance
Blurred or impaired vision
Hearing problems
Weakness in one or more limbs
Sudden onset of paralysis
Lack of coordination
Fatigue
Dizziness and vertigo
Abnormal sensations (including burning or cold sensations or sensations of pain)
Feeling a band of tightness around the body

Whoa. With the exception of vision problems, I had experienced every single one of these symptoms over the past two years. Every single one. This accounted for everything, even the tightness in my chest and the hearing loss. A tiny wave of shock and dread washed over me. This fit!

I went on to read that additional symptoms can include impaired thinking, inability to focus and cognitive difficulties, such as forgetting names and words. As I read this, it occurred to me that I had been struggling to think clearly lately. I have been forgetting things that I know, including names and often fumbling through sentences trying to think of the right words. I chalked this up to the stress of everything I had been dealing with, but…..could these also be symptoms I have been over looking?

I continued reading…

MS is a disease of the brain and spinal cord – the central nervous system. MS gradually destroys myelin, the protective coating surrounding the nerves, which hinders the brain from communicating properly with the rest of the body. This, in turn, causes the malfunctions that are the symptoms of MS. As MS gets worse, additional symptoms such as tremors, difficulty walking, inability to control the bladder and bowel and difficulty with speech and swallowing may occur.

I slammed my laptop shut. I couldn’t read anymore of this, it was too overwhelming to contemplate. I had no idea what to do; I just sat there in shock and disbelief. Then I broke down and started to cry. It was near midnight at this point and I sat in the dark, alone, and I just cried.

Could MS really be the answer to my unsolved health mysteries? If so, is this what my future held? Would my body continue to deteriorate until I could no longer walk or speak properly or control my own bladder? Difficulty swallowing? Tremors? Oh God.

I stood up and began to pace as my bawling became increasingly more hysterical. I didn’t know what to do with myself. It was late, the world was asleep. It was just me, alone in the dark with these horrifying thoughts.

And then I just stopped. I stood in the middle if my dark living room, my eyes burning and hair clinging to my wet face, and I took a breath…

Okay girl…just calm down. There’s a reason we don’t watch scary movies alone in the dark, the same should go for reading scary things online. I told myself that I was making something out of nothing, and that chances were I was reading way too much into this and making connections that weren’t really there. And anyway, the middle of the night was hardly the time to hash through my health problems; best to just put it out of my mind and go to sleep. I was exhausted.

I took a few more deep breaths and dragged myself off to bed where Nick was already sound asleep. I crawled into bed as quietly as I could and curled up next to him, gently wrapping his arms around me. Futilely, I tried to put what I had read out of my mind. But like trying to move a stubborn cat off the bed, what I had learned was determinately remaining at the forefront of my thoughts. Not wanting to wake Nick, I rolled over and buried my face in my pillow and silently cried myself to sleep.

Part 7 - Progress, Setbacks and Discoveries

After my decision to renounce modern medicine for a while, I sought treatment from an acupuncturist and a chiropractor. I was fairly green with chiropractic care and was completely new to acupuncture; I had no clue what to expect. At my very first visits with each practitioner, however, I was given something that the last four medical physicians had failed to provide: validation. Instead of doubt, I was met with concern and reassurance and they both conveyed a sincere desire to want to help me. For this, I was extremely grateful. I had no idea if either of them could solve my health mystery, or even make any kind of impact on my condition. I was simply relieved and encouraged that I was finally being treated like a human being. As far as I was concerned, that was a step in the right direction.

After reviewing all of my symptoms over the last year and a half, several theories were immediately suggested: a compressed cervical disc or a pinched nerve. Well this was certainly an improvement over the “It Just Happens” hypothesis, and so I spent the next two weeks receiving treatments from both practitioners.

Much to my intense disappointment, however, none of it was making any difference. In fact, I was getting worse. The numbness was somewhat less intense and I had regained a small amount of movement in my left hand, but it was still basically non-functional. And it now felt constantly cold; an aching, burning cold. To the touch of anyone else (and to my own right hand) it felt perfectly normal, but to me it felt like my left hand was submerged in a bucket of ice. I had also lost hearing in my left ear.

Upon learning these developments, my chiropractor decided that this wasn’t a simple case of a pinched nerve or compressed disc and he confessed his growing concern that this was something much more serious. He suggested I see a neurologist and gave me the name of someone that came highly suggested from some of his other patients.

I felt defeated. While I appreciated the care and the honesty with which I was treated by both my chiropractor and acupuncturist, I still didn’t have any answers. Still no one knew what was wrong with me and my condition, whatever that was, was worsening.

And a neurologist? Really? That brought to mind brain tumors and mad cow disease. What did my chiropractor suspect I could have that would warrant a neurologist? I wasn’t sure that I was quite ready for that, or if I was ready to give the medical community another opportunity to kick me while I was down. I did feel, however, that it was time for me to educate myself on my symptoms and start doing a bit of my own research.

Meanwhile, I was still working full time at my job as an optician. If I thought dressing myself and trying to do my hair with one hand was a challenge, it was nothing to trying to repair delicate eyewear and replace teeny tiny screws in glasses. Total nightmare. My co-workers expressed a great deal of concern and were as helpful and understanding as possible, but daily business flow and scheduling requirements made it nearly impossible for me to have help all of the time.

I went from keying 70 wpm to a one-handed hunt-and-peck, which seriously slowed my productivity. As I could no longer hear out of my left ear, I had to hold the phone between my right ear and my shoulder while trying to peck at the keyboard with my right hand. When it came to repairs, I devised an ingenious way of holding a pair of eyeglass frames steady by gently wedging it between the counter and my stomach and then using my left hand as just a dead weight to keep it from tipping over. I could then use my right hand to turn a screw. Ingenious, but difficult as hell. Adjusting a pair of frames was a different matter entirely, and there were a few times I had to embarrassingly ask patients to come back another time when someone more able was available. Working like this was beyond complicated and completely exhausting.

As if trying to work this way wasn’t demanding enough, the very act of getting to work was another task entirely. As someone who has always taken pride in her appearance and maintained a professional image at work, I was finding it extremely difficult to show up looking like I had just rolled out of bed. A look, mind you, that took me a good hour to achieve. It was simply impossible to do a pony tail with one hand (though that didn’t prevent me from attempting this every single morning) and, despite my best efforts, a frizzy mess was the best I could pull off. Button-up blouses were completely out of the question, so I resorted to some of my nicer t-shirts, hoping no one would notice they were t-shits underneath my lab coat. Makeup was reduced to the bare minimum, as I was learning just how much I used my left hand to apply eyeliner and mascara. Jewelry was also out of the question, as I had no means of fastening a necklace or even my watch. Thank God I had slip-on shoes I could wear to work.

I had no idea how much I used my left hand until I couldn’t.

Living like this was draining to the core. My days at work consumed every ounce of energy and motivation I possessed, and I spent my evenings at home on the couch or in bed with a heat pack on my freezing-but-not-really -freezing hand, my laptop and a billion questions racing through my mind. Where were the Doctor House’s of the world when you needed them? Sure, Dr. House would have to stop my heart a few times and unnecessarily saw open my skull, but after making an intern cry and some sharply delivered wit he (and those piercing blue eyes) would have me diagnosed in an hour (45 minutes without commercials). *sigh* If only.

Once again, my husband was an absolute gem. He stepped up and took complete responsibility for all the household chores, laundry and meal preparation. He was working full time, same as me, but he knew I just didn’t have it in me at the end of the day. It was difficult for me to sit idly while Nick did all the things that I felt I was supposed to be doing. But once again he did it without question and with love. My attempts to help were only met with protest. God bless that man.

Sleep was difficult to come by due to a combination of pain, discomfort and worry and I spent quite a few nights online looking up information on my symptoms. I found a lot of information on compressed spinal discs and pinched nerves, but not all of the symptoms fit and I had symptoms above and beyond the norm for those conditions. Strokes kept coming up in my searches, but it didn’t seem likely that I could be having strokes. Could it? No, I would know if they were strokes. Wouldn’t I? Then I remembered WebMd and their symptom checker. I had only used it in the past for minor things like coughs and fevers, but I thought perhaps it could be a simple way to get more information on other conditions.

I plugged in my two major symptoms first, the numbness on my left side and the paralysis, which resulted in a fairly large list. As I kept adding symptoms, the list narrowed and three possible conditions moved to the top of the list: Transient ischemic attack (a TIA or mini stroke), stroke and Multiple Sclerosis.

Part 6: Deja-vu

I went to bed on Thanksgiving night hoping against hope that I would wake up the next day to a fully-functioning body. No such luck. The entire left side of my body was still numb and aching, my chest was still being squeezed and my hand was still paralyzed. Brilliant. Also, that funny thing with my feet was back; that prickly sort of shocking sensation they would get when I tipped my head down. It had been quite some time since I experienced this and I never really thought anything of it before. Strange it would come back now with everything else going on.

My panic had eased at this point since none of my limbs had fallen off in the night, but I was still terribly disturbed by the fact that half my body was malfunctioning. Looking back, this was the third time something weird and inexplicable had occurred with my body. And each occurrence had been more intense than the last. Could there be a connection? Surely this wasn’t coincidence; all these symptoms must be suggestive of something. The question was….what?

The only medical office open that holiday weekend was InstaCare. They’re notorious for their long waits, but I felt it was imperative to be seen that day. Once again Nick had to help me get dressed. I struggled to put my hair in a pony tail for nearly twenty minutes, during which time I uttered some pretty creative curse words and damned several things to hell. Eventually I gave up and decided just to go. At least I had shoes on, which Nick had to tie for me.

Once we arrived and were in the exam room, I was rather impressed to learn that all patient charts were now on computer and that this doctor also had access to my medical history right on his laptop. Neat! That would save me a lot of explaining. The doctor seemed to listen attentively as I detailed everything I was experiencing, even mentioning the feet thing and some of my past experiences with the vertigo and facial numbness. He asked a couple clarifying questions and did a few sensory tests, making notes along the way. Then, much to my shock and amazement, some very familiar words were spoken….

“Well, I don’t know that I’d really be too worried about it. These neurological disturbances happen sometimes and they usually go away on their own.”

Uhhhhhh……he was joking, right? He had to be fucking joking. Was I really hearing this for what seemed like the hundredth time? I’d lost feeling in half my body and my hand was paralyzed! That just happens sometimes?? This really raises no red flags? An eyebrow even? Was this guy really going to send me out the door with yet another “don’t worry about it”?

I was floored. I honestly don’t know what I was expecting to hear, but I was certainly not expecting to be disregarded once again. My concern was now giving way to exasperation and anger.

Part of me really wanted to lay into this guy and impart the extremely colorful rant that was going through my head. But logic told me it would be useless to argue with him and that it could really only result in some uncomplimentary notes in my medical file. I simply gave him a disingenuous thanks and left.

I’d had it. Something was going on and I was no longer buying the story of “these things just happen”. The facial numbness, the dizziness, the tingling in my feet, the vertigo and now this; something was definitely not right. Why would no one take me seriously?

I had never fathomed that something like this was possible. Aren’t doctors supposed to be the authority on the human body? Is it not their trade to investigate the clues to come to a diagnosis and work to restore health? I realize that doctors are also human beings, and human beings can be flawed. No one is perfect, not even physicians. But four in a row giving me the same mollifying explanation was, in my opinion, beyond contemptible.

I was done. I resolved to not waste any more time with doctors. Instead, I decided to look into the options available with alternative medicine and, in the meantime, start doing a bit of my own research.

Part 5: Uncomfortably Numb

The summer of 2006 turned out to be fairly eventful. We took some trips, attended a few concerts and enjoyed a ton of barbecues and summer festivities with friends and family. The most notable event, however, was the purchase of our first home. We couldn’t have been more thrilled! Life was good, all was well and we were having a blast. Best of all, I was feeling fine. The vertigo hadn’t returned, the nausea was gone and my energy levels seemed to have bounced back to normal. That unsolved health thing was ancient history.

Months passed and summer gave way into fall, my favorite time of year. Colorful trees, cozy sweaters, spicy warm drinks and pumpkin pie…what’s not to love? Fall also meant Thanksgiving. And with our new house finally put together, we decided to host both of our families for Thanksgiving dinner. This would be our first time as hosts as well as our first time preparing a meal on this scale. This would also be the first time both families would be together in one room. Needless to say, this event was presenting us with a few minor anxieties. Still, Nick and I were looking forward to embracing this role in the Thanksgiving tradition.

We awoke early on Thanksgiving morning, eager to get our first-ever turkey buttered, seasoned and in the oven. As I was working up the energy to pry open my tired eyes, I noticed a very odd sensation…a numb feeling all over the left side of my body. Geez, I really must have slept weird, I thought, and I started shifting around a bit to encourage my limbs to wake up.

But they didn’t wake up. And as I stood up and started moving around, I was beginning to feel the extent of this numbness. It was everything on the left side of my body. Everything. My leg, my butt, all around my torso and my chest, my entire arm and up into my shoulders and neck….front, back, everything was numb to the point that I could barely feel the touch of my own hand. Additionally, my chest and torso felt very tight, like I was being squeezed by a bra two sizes too small. Except I wasn’t wearing a bra.

Groggy and unnerved, I wandered into the bathroom to wash my face and brush my teeth. Perhaps if I just kept moving I could get some circulation going. As I reached for the toothpaste with my left hand, it slipped from my grasp immediately. Annoyed with my own clumsiness, I bent over to pick it up off the floor. But I couldn’t grasp it. My fingers were stiff and spastic. I grappled with the tube for a minute or so, but try as I might my fingers kept slipping and fumbling. I had zero sensation in my hand and I had no motor control. My hand was paralyzed.

I froze. I had no idea what to do. For a few moments my mind went blank and I just stood in the bathroom, barefoot and in pajamas, staring at the tube of toothpaste on the floor. And then, as if someone flipped a switch, the panic in my mind activated and forbidding thoughts began to whirl around in my head….

What the fuck was going on? Was this a stroke? A heart attack? No, a heart attack would be on the right side. Or is it the left? I don’t know! Should I be dialing 911? I don’t want to go to the emergency room! This can’t be happening today, it can’t! I have ten people showing up at my door in 6 hours and I have a house to clean and a huge holiday meal to prepare from scratch!

Frantic, I made for the kitchen to find Nick and explain what was happening. He felt that this was neither a heart attack nor a stroke, but agreed this was seriously concerning. We discussed going to the emergency room, as that was the only option for medical care on Thanksgiving Day. After some thought, however, I decided against it. My life didn’t seem to be in any imminent danger and I certainly didn’t want to spend the day in the ER. Plus I didn’t want to ruin Thanksgiving for everyone. I decided to just plow on through the day as best I could.

With only one side of my body functioning, there really wasn’t much I could do and I felt relatively useless. Nick rose gloriously to the occasion and did majority of the cooking and cleaning. Meanwhile I tackled the job of getting myself cleaned up and dressed, which was proving to be an epic task. Putting on a shirt, pulling up pants, putting my hair in a pony tail….basic things I do every day had suddenly become damn near impossible to do by myself. This frustrated and angered me beyond belief. But also, it petrified me. What the hell was happening?

As the day progressed, the numbness did not subside and my whole body was becoming increasingly uncomfortable, achy and tight. I had this gnawing thought in the back of my mind that perhaps I was being stupid and this was a lot more serious than I was allowing myself to believe it was. But guests would be arriving soon and I needed to get myself together. I convinced myself that if it were really that serious, I would probably be on the floor by now. I just needed to suck it up for one afternoon.

Once the family arrived, we all gathered in the kitchen. Everyone talked and enjoyed the great meal that Nick had prepared. As is traditional with Nick’s family, they all went around the table and acknowledged what they were thankful for. I sat at the table and quietly ate while I listened, nodding and smiling at the conversation taking place around me; I simply didn’t have the mental capacity to join in. I felt strangely detached, as if I was observing myself from the outside. The entire situation was a bit surreal, but I was determined to stay as involved as I could.

No one was wise to what was going on with me that day, which was my choice. I loathe being the center of attention and I didn’t want the focus to be on me that day. Besides, we didn’t even know what was going on. I just wanted everyone to enjoy a nice Thanksgiving. And perhaps a little dose of denial would keep me from completely losing my shit over this.

I just needed to make it through to the pie. Predictably, my mother-in-law had to go to work later that day (an unfortunate downfall of working retail) and, if history was any indication, the family would begin to dissipate once we were done with pie and mom had gone. I could make it until pie. Tomorrow, I would find out which medical facilities were open.

The Beginning - Part 4: Doctors (continued)

March gave way into April and I was starting to feel some improvement. The dizziness was slowly diminishing and by the third week in April, it was gone. At this point there seemed little reason to keep my appointment the following week with Dr. Dizzy, but I decided to go anyway. I waited all this time, I might as well discuss what happened; perhaps he could shed some light on this mystery.

Dr. Dizzy was very kind and patient, and listened attentively as I recounted yet again the events that began nearly two months ago. He performed a few tests that measured my eye movement and hearing, as well as my balance and responses to certain head movements and changes in head level (between sitting, laying down, etc.). All of my responses were normal. "Everything looks just fine," he said. “I’m not sure what the problem is.”

Um….no kidding! Of course everything is fine...now! Whatever this was had passed while I was waiting a month to be seen. At this point I was simply hoping for an experts’ theory on what could have happened and if it's something I should be concerned about. Might he have an inkling, a tiny sparking ember of an idea? No such luck. After waiting a month for this guy who was built up as a leading expert, being told the obvious was a bit more than I could take.

I often thank the powers that be that others are unable to hear my internal dialogue. And instead of imparting the rant that was going on inside my head, I simply smiled, thanked him for his time and left his office feeling considerably agitated.

Someone once said that expectation is the root of all heartache. I don't know what I expected from this doctor, but yet another "I don't know" certainly wasn't it. I decided there was no point in pursuing this any further and resolved to put it out of my mind. After all, Summer was just around the corner and the next few months were going to be jam-packed.

Nick and I were set to be the attendants at our friend's wedding to be held in Las Vegas the first weekend in May. There was also a trip to Seattle booked for the end of May with my best friend. Additionally, we had begun packing up our apartment as we had begun a bit of preliminary house-hunting with promising prospects. Plus with Mothers Day and Fathers Day coming up, I just didn't have time worry about this anymore. Whatever it was, it was over and I was looking forward to a really great Summer.

The Beginning - Part 4: Doctors

My doctor's office was able to work me in for an appointment the very next day. “Wonderful,” I thought! I already felt somewhat relieved that I was about to have some light shed on this mysterious experience. Thursday came, by which time I was starting to feel a bit less like I was living in a fun house, though I was still dizzy and my stomach continued to be disagreeable. I still wasn’t eating much, but at least I wasn’t throwing anything up either.

When Nick came home from work, we hopped in the car. I was a tad anxious about the car ride, worried that the motion might trigger another puke-fest all over the floor of my nice Thunderbird. But we made it to the doctors’ office without an incident and Nick and I sat patiently in the waiting room, eager to find out what the devil was going on.

When the doctor came into the exam room he reviewed my symptoms and did a quick physical exam while I detailed the last four days. "Is it possible you're pregnant," he then asked?

Truth be told, that was one of the first things that crossed my mind too. However I assured him it was unlikely as I had already taken two pregnancy tests at home with negative results and hadn't missed any periods. He agreed pregnancy was unlikely and threw out a few other ideas....inner ear disturbance, some kind of virus, possible B-12 deficiency. He drew some blood, said he would run some tests and get back to me.

A week later, the results were in. Everything was normal. He went on to explain that "sometimes these things happen and they tend to resolve themselves, I really wouldn't worry about it". That sounded like a very pacifying way of saying "I don't know" to me. But, he's the medical professional. Surely he wouldn't send me on my way if there was truly something to be concerned about. And I was starting to feel better. Maybe I really shouldn't worry about it.

A week passed. While the vertigo seemed to have subsided and I felt decent enough to return to work, I was still constantly dizzy and felt mildly nauseated most of the time. I was also unusually tired. Something was just not right. I decided to get a second opinion and made an appointment with another doctor in our neighborhood, opting for a woman this time in hopes of a bit more consideration.

After hearing my account of the last couple weeks, Dr. McLady* believed it likely I was having a silent migraine, which is a migraine without the headache. I hadn't heard of this before, but she assured me they were quite common and can sometimes be accompanied by the symptoms I had been experiencing. She also assured me this was very easily treatable and recommended a course of low-dose Valium to be taken consistently for two weeks.

Well this was certainly a step ahead of Dr.Don't Worry About It and sounded like it could be progress. I started the treatment and two weeks later....(drum roll please)....I was feeling exactly the same. The only change I noticed was the increase in my frustration.

When I explained this at my follow up visit, Dr. McLady admitted she wasn't sure what was going on, but referred me to an otolaryngologist (ENT) who specialized in dizziness. I was growing weary at this point, but supposed this guy was worth a try. Third time's a charm, perhaps?

When I called to schedule an appointment with Dr. Dizzy*, I was informed his soonest opening was in a month. A month?? I had already spent a month getting nowhere and I was none too keen on waiting another. The receptionist explained that Dr. Dizzy came highly recommended and assured me that he was worth the wait. I supposed if this guy really was the Gregory House of otolaryngology then it was probably in my best interest to see him. Feeling slightly defeated, I scheduled the appointment for the last week in April.

*Names have been changed to protect the imperceptive.

The Beginning - Part 3

March 7, 2006

Despite my hopes, I didn’t wake up feeling right as rain. Quite the contrary, in fact. While the vertigo had calmed itself down to a dull roar, I still had zero equilibrium. I could sit up in bed with minimal trouble, but getting out of it was another situation entirely. The instant I attempted to stand, I hit the floor. My head still felt like it was made of lead, heavy and being pulled downward. I couldn’t stand, I couldn’t walk. I was a marionette whose strings had been cut.

The thing about being in a situation like this is that you really learn a lot about your relationships. And yourself. I needed help with everything. I was powerless to even get myself to the bathroom, having to swallow yet another gulp of pride and allow Nick to haul me in there, help me get my pants down and place me on the seat. I was able to hang onto the bathroom counter for support, so I’d make Nick leave the room while I attended to business. He would then return to get me up again, help get my pants up and get me back in bed. At 26 years old, this experience was about as humbling as it gets.

But Nick did it without hesitation and without question, and with more love than I could have possibly imagined. He didn’t think, he just acted out of pure reflex. I needed him and, as far as he was concerned, that was all the reason he needed to spring into action; action that was driven by love and devotion.

It wasn’t until years later, when I was helping Nick with similar activities after his knee replacement surgery, that I fully understood this. I knew Nick loved me more than anything, but I don’t know that I thoroughly understood how deep that devotion went. Perhaps he didn't either. This experience revealed strengths that I don't think either of us knew we had and it illuminated what was truly important to us....each other.

By Wednesday my equilibrium had more or less returned. I could walk around the house if I had a wall or chair on which to steady myself. My boss advised me to take the rest of the week off work, for which I was extremely grateful. I was still very weak and unsteady and still experiencing small bouts of vertigo. The episodes were brief, but would have been dangerous were they to occur behind the wheel of a car; I was grateful for the time to rest and recuperate. But one question still remained….what the hell caused this?

That afternoon, I called my doctor.