Unpacking My Baggage.

The story of how my diagnosis came to be, is one that very few people know the whole of besides my husband, until now...

Growing up my step-father was a raging alcoholic. My Mom and I were both abused, while she got the brunt of it. I think we both broke in different ways. We moved around a great deal. A lot of things got lost, broken, or left behind along the way. So many places and tubs became a catch all of things important that were saved yet never used. Never unpacked, or found in the obscure box they were shoved into. It's only recently I've been finally working through those things. Finding proper homes for that worth keeping, and moving on from what was not. I've cleared through a ridiculous amount of storage from my childhood. Sold vintage toys on Ebay, burned old love letters, found homes for precious trinkets.

A few items bring back precious memories, other items acting as the only proof of an event's existence. I've recently began sorting through an old jewelry box, my latest project. I have an updated more functional version to organize my jewelry better, and I have another on my 'to purchase' list to assist even more. I have a habit of collecting pressed pennies from places I go. They got their own drawer. Some of the trips I remember well. Some trips the copper trinket serves as the only convincing element that I was ever there.

I document my life meticulously now, especially moments of importance. My memory is terrible due to having multiple sclerosis. It's one of my most affected areas of brain damage.

It's safe to say that over time we all become a different person. We grow, mature, make mistakes, and ultimately become a summation of our experiences. What happens though when you can't remember the experiences you're a summation of?

As I sort through my things I wonder just how long I've been sick. Looking through items that I know are mine. Things that look sentimental, or valued. Things I have no recollection of. It's weird looking at a life you know is your own, yet feeling like a stranger. I find myself more often than not faking recollection in an attempt to not draw attention and seem normal. Chris always knows, somehow.

I'm careful now to try not to let moments, memories, and items go forgotten. An organized system as to not forget about a possessions existence, or how it came to be. Even if the memory flees, I usually know where to find it.

I didn't always have time to do this, or know how. I didn't always understand what was wrong, or just how much was wrong. That saying 'you don't know what you don't know' also goes for being ill. When you're sick for so long, you don't always know what's 'normal' and what's not. I used to think I was missing some big life secret. That I just wasn't as good at handling life as other people, or as observant of a person. The things people seemed to be able to recall baffled me, as some days I can barely remember what the last episode of Burn Notice was about.

With the knowledge I have now, I can confidently say that I've had symptomatic multiple sclerosis since I was at least 22, even though I was just turning 27 when I was finally diagnosed.

Growing up in an abusive household there's a lot to developing communicational skills that gets lost along the way. Feelings were dangerous, conflict was deadly, because of this I was a very private person for a long time. I didn't like my business being shared with strangers, especially things about my health. I didn't want to be perceived as weak. Weakness was dangerous. I didn't trust people to know my flaws.

I knew I was sick. I knew something was wrong for a very long time. My Mom has had fibromyalgia since I was born, and I knew how terribly it affected her life. I also knew at the time how few doctors actually recognized it, and how little medication did to help. My Mom went through periods of being on very wrong medication from doctors with good intentions, that did so much harm instead of good. I didn't want that to be me. She was doing well living her life despite it. I figured she may have passed it down to me. I'd be fine too.

Sometimes though, I'd have a few weeks or months where things would get so much worse. Weeks I could barely function. The dizziness made it nearly impossible to get out of bed, the double vision making it impossible to drive. I'd be convinced I was dying. I had to have a brain tumor, or something. I'd go to the hospital in a panic expecting answers, only to find none. They'd say it was stress, or anxiety. I'm used to stress, had I really become that bad at handling it? Could I really be that bad at handling my life now to the point of physically making myself ill? Doctors were starting to convince me I was crazy. I mean if there was something wrong, they'd find it, right? My pulse was averaging 175bpm, but they said I was healthy, and there was nothing wrong. I had anxiety, I needed to calm down.

Now, I recognize that these were flares of my MS. Then, I thought I was dying and no one knew it but me.

I was forgetting things at work. Tasks I was assigned, temperature checks every four hours. Things were slipping my mind so easily. I became obsessive about lists, they kept me in check. My bosses thought I was flighty or didn't care. My job was everything to me though at the time. How could I be so forgetful about something the quality of which I cared so much? Office tasks like scheduling and vendor invoices were overwhelming some days, and took me considerably longer than others to problem solve. I knew I was competent, I knew it wasn't above me. I didn't know what was wrong. Maybe stress really was getting to me.

One CAT scan at the hospital showed a cyst in my upper sinuses, right at the base of my brain. That had to be it! I was so relieved to finally find the cause. They put me on heavy steroids to shrink the cyst before surgery and I felt great. Little did I know, I was treating my flare with the steroids. I had surgery to have it removed and was relieved that I could start to feel normal again, and live without fear of some impending doom. I remember an excited phone call I made to my Aunt after a followup with the ENT. I felt great! I was so excited that everything was going to be fine. The steroids were shrinking the cyst and all of my symptoms had stopped!

Until the steroids stopped, the surgery healed, and the flare came back. I was heart broken, and terrified. I insisted the surgery was botched. Demanded another CAT scan, the cyst had to have grown back. I felt so good at first! There was no cyst, and no answers.

The doctors said I had anxiety, I needed to calm down.

I started having issues with twitching, pain, and numbness in my hands. I was dropping things at work, and having trouble scanning purchases. I saw specialists, went for physical therapy. After months of therapy the physical therapist suggested I see a specialist, the therapy wasn't helping. Due to expense I gave up.

The heat of work made me even sicker yet for some reason. I'd take bathroom breaks at work, sitting on the floor pleading with some higher power to make the vertigo stop. I'd count my pulse, 170bpm. Anxiety. I needed to relax. I could feel my heart palpating. I could feel the beat skip as I counted my pulse. Meditating on the bathroom floor praying for it to slow down, that today wouldn't be the day I'd be scared enough to call 911. I'd give anything to be able to stock the coolers, or do a task in the freezer. Being a manager though you can't afford to be off the floor that long in that type of business.

Employees were convinced I was slipping to the bathroom to use my phone, so I started leaving my phone on the desk. I was their boss, and determined to set a good example. I felt like I was dying though, I needed air and composure away from customer's prying eyes. I needed the spinning to stop. The doctors said it was just anxiety, I needed to relax. I kept telling myself it was just anxiety, I needed to calm down. I needed to calm down about my need to calm down. Deep down though, I was terrified they were wrong. Terrified I was dying and I was the only one who knew, but no. It couldn't be. The doctors said I was fine, I just needed to relax.

I refused to miss work for it, except for the rare times it would scare me enough to go to the hospital. At the hospital I was treated like a head case, a drug seeker, and a pain in the ass. Why couldn't they see I was sick? Didn't they see how fast my heart was racing? Could stress really do all that? Maybe I just really needed to relax.

I started getting issues with pain. The headaches were the worst. I'd take and mix so many over the counter drugs it's amazing I never over dosed, or damaged my liver. I'd stop at Wal-Mart at 2am on the way home from work and search their over the counter section for something, anything to make it stop. I started taking medicine for motion sickness, and amazingly it helped. Little did I know, I was treating my MS. I kept it with me everywhere I went. I took it prophylactically half the time. Some days at work I'd scrape together all the change I had to buy a bottle off the shelf if I ran out. It worried me why it worked. Maybe I didn't just need to calm down. 

I tried to come up with so many theories on my own what could be wrong with me. I even bought myself a glucometer and started checking my sugar, for fear the symptoms were from hypoglycemia. They weren't.

When it wasn't the pain, or the vertigo, it was the insomnia. I started self medicating with alcohol and poor decisions. Drinking myself to sleep at night. I got some shut eye, and it stopped the pain. Nyquil helped too. Doctors threw anxiety medication and Xanax at me hoping to solve the problem. I refused to take the Xanax though seeing what it did to my Mom, but I took the others. It's a wonder I didn't accidentally kill myself.

I started living recklessly. Checking experiences off my bucket list every chance I felt well enough to. But one day, I started to feel better. Little did I know it's because the flares had calmed down for awhile. All I knew, was it felt like I got a second chance. I was okay. Maybe I finally calmed down? I started doing volunteer work with my free time, and remodeling my apartment. I wanted a calm space, with the best functionality I could get out of it. Stress was the enemy. I actually started taking vacations from work, instead of saving them up for sick days.

And then came the accident. There's lots of key moments in life that change our entire path. Some of them we don't even recognize happening they're so subtle. This one came in loud though, and flipped my entire world upside down. My hip was shattered, I was put into a nursing home to rehabilitate. I lost my job, I almost lost my life, and I had no idea which way was up from there.

While I was in the nursing home my right ankle kept swelling terribly. The doctors were baffled and had it looked at over and over again. Xrays, ultrasounds. There was no break, no clot.

I had trouble rehabilitating. Trying to walk again was terrible. Was learning to walk again really that terrible? I didn't know it at the time, but I was having a MS flare from the accident that took my balance and sensation. The surgeon didn't understand it, and assured me that my hip was healed perfectly. I assured him that it felt terrible and something was very wrong. Walking shouldn't feel like this. He just kept insisting it was the muscles healing still. I needed to get stronger. It was an extensive break. One of the muscles he had cut was responsible for my balance after all. The muscle looked healed, but maybe it just needed more therapy.

Then came the pain. When I finally was able to walk again, it felt awful. I was in so much pain I could barely stand it. Again the surgeon insisted my hip was healed perfectly.

Then, came the numbness. I started to lose sensation in my leg, and fell down a set of stairs because of it. After a panicked trip to see the surgeon he assured me it was not related to anything he did. Maybe I pinched a nerve in my back? I was given steroids and anti-inflammatory injections and sent home. The numbness cleared up.

Determined to get my life back together I enrolled in college. I was going to make some good out of all of this yet. I took out a loan and signed up for a very aggressive course load, taking a triple major. I was doing great, all straight A's in all of my classes. I started getting really sick though again, and after a few ER visits I discovered my gallbladder was necrotic, and fusing to my liver. It needed to come out. I pushed the surgery off as long as I could, monitoring my diet carefully to avoid digestive pain the best I could manage. I wanted to do it over Thanksgiving break. I couldn't miss classes. When I went for my pre-op testing the surgeon had a fit about my heart rate. I assured him it was just stress, it was fine. That's what all the doctors tell me, why couldn't he get it too. All of the sudden someone wants to care and fuck up my schedule?

I got sent to a cardiologist and had to reschedule my surgery. I wound up taking a semester off of school. After my surgery I started getting sick again. I was scared to drive from the vertigo. I didn't feel like I was healing well. I didn't even want to leave my bed. I took another semester off of school to recover. What I didn't know, was the surgery caused a flare in my MS.

I started to get a lump on my right ankle. The one that swelled so bad after my car accident. It felt weird, and hurt. I didn't know what it was. I feared it was cancer. Maybe I really was dying. 

After seeing two specialists about it, I had exploratory surgery. It was a mass alright. A mass of rheumatoid nodules. I had rheumatoid arthritis. No wonder I felt like garbage so much of the time! It explained my pain and fatigue, and I felt a bit less crazy. I saw a specialist who has since became one of my favorite doctors. We tried medications to hopefully get me feeling better. I was so excited. 

Then the double vision started again. Worried it was a side effect I contacted my rheumatologist about it, and after an examination I was sent to an opthamologist. It wasn't a side effect.

After an examination from the opthamologist I was sent for an MRI. He felt my vision problems were neurological. I felt like my fears were confirmed. What if I really did have a brain tumor? What if my fears were right all of this time? Less than an hour after I was home from my MRI the phone rang.

It was my opthamologist.

He saw my MRI results already. I had swelling and lesions on my brain.

I had multiple sclerosis. I needed to make an appointment with a neurologist right away.

I remember going up to my grandparent's apartment after the phone call and crying as I told them. I wasn't just crying in fear though, I was also crying in relief. Relief that I wasn't crazy, that this thing that was wrong with me had a name. That it was something I could fight.

If one single doctor in all of those visits would have taken me seriously and ordered an MRI I would have been diagnosed up to five years earlier. I could have potentially stopped the damage to my brain before it got so very advanced. I wouldn't have spent years thinking I was crazy, suffering, and self medicating.

It wasn't just stress.

My racing pulse wasn't from anxiety. My brain was no longer controlling my body's automatic nervous system properly anymore. My heart was beating out of control. I had developed dysautonomia.

I never did get back to school, or back to work. I've been battling my immune system ever since. Trying to find the right combination of medication to make the attack on my body stop. Trying to get ahead of the damage that's been chipping away at my brain for years.

Trying to finally unpack my baggage.

It was a tough diagnosis to swallow, but it made so much make sense. I'm no longer convinced I'm dying, although I almost have a few times since from medication side effects. Now instead I'm convinced I'm living, and determined to do it the best I can. I'm armed with knowledge. Since my rheumatoid arthritis and multiple sclerosis diagnosis I've also been diagnosed with fibromyalgia and erythromelalgia. My immune system is insane.

But now I understand what's wrong. Sometimes I still wind up sitting on the floor talking myself down from some twisted version of reality my brain tries to throw at me, but now I understand why.

I understand why the heat makes it worse, why the room moves, why my hands twitch and tremor. Why my legs go numb.

Why I'm so forgetful.

And I'm armed with ways to make it better, and the confidence to know I'll live to fight another day.

I've met an amazing man whose joined me in my battle, and whom I've recently married. I don't know where I'd be without him. He's been a rock for me since even before my diagnosis, a steady listener, and faithful friend.

I've learned how MS affects my emotions, and relationships. I've learned to communicate better, and become a more understanding person.

I've learned to advocate for myself in a positive way.

I'm learning how to live again, despite these diseases. And I'm learning how to do it better each and every day.

So as I continue to unpack my baggage and fan through trinkets only some of which I remember, I find myself thankful to still be here to try.

To still be able to learn how to enjoy life better, and to know that I don't just need to calm down.

A question I asked my husband shortly before we got married was, 'Why me? Why marry me of all people when I have all of this baggage?'. And his simple reply was that if I hadn't noticed by now, he is really good at carrying bags. I'm finally in a place where I can unpack my life, unpack my bags, and build something that demands to be remembered. I'm finally prepared to fight.