Work

Goodbye Yellow Brick Road!

10 surefire signs you are SO OVER your current job!

The following list is true. I should know. They happened to me!

Your immediate supervisor tells you she is happy you want to go back to school and is willing to scheduling your work hours around your classes. She then proceeds to tell her boss how much of an inconvenience this will be and that he should deny your request for flexible hours. Soon after, you are put in charge of making the Halloween display at your job. You decide to decorate the wall with a cemetery scene complete with handmade tombstones. You make a tombstone for yourself which reads “…She bled to death trying to get the knife out of her back”. (FYI – my flexible hours were approved despite my supervisor).
Your boss lets you order a new office chair as long as the price is under $100.00. You find a message chair on clearance for $95.00 so you buy it. Your boss thinks it’s funny and lets you keep it. Everyone is jealous. It is the best chair ever. You STILL hate your job.
An asshole customer makes you cry. Since you are forced to wear a name tag, “asshole” now knows your name. Then, whenever “asshole” comes back in, he makes a point of saying hello and calling you by your name. You seriously consider changing your name to “my boyfriend is large and will kick your teeth in”.
You are made to feel guilty for calling in sick to work so you come in anyways. While at work, you pass out while waiting on a customer. Your supervisor panics and notifies the whole store you have fainted by announcing it over the PA system. The store manager, assistant manager and 3 others rush to your aid. The store manager proceeds to ask if you are pregnant or on drugs. (You can’t make this shit up).
You work at a mom and pop pet store where there is a large sign stating “Please do not pick up the rabbits”. Of course, a kid picks up a rabbit. It bites him. The kid drops the rabbit on the floor and you have to go retrieve it from behind the fish tanks. Said rabbit proceeds to scratch up your forearms with his razor sharp, talon- like back legs, until your arms are dripping blood like a tourist at a zombie convention. The little darling’s parents proceed to yell at you for “scaring their son”.
IBM used to market a business computer called Wang. The system is garbage and goes off-line at least once a day. You are constantly on the phone with the Help Desk for assistance. One particularly busy morning, the system goes down and you place the obligatory Help Desk call. They ask if the computer in the manager’s office is working, and as luck would have it, your manager has just walked in. The first thing out of your mouth is “hey, when you were in your office were you able to get your Wang up?” It all goes downhill from there.
An investor is buying property that has been foreclosed on, and you are put in charge of preparing the deed and all the transfer documents. On the day of the closing, the buyers show up at your office to sign the papers. You and your male boss greet the visitors, and you stick out your hand for the customary greeting. DENIED. The buyers tell you they will NOT shake hands with you because you could be unclean (i.e. on your period) and that it is against their custom to conduct business with a GIRL! The boss excuses you from the meeting.
A customer comes in to cash a check and you ask him for his ID. He hands you his license along with a condom that is stuck to the back. You try to laugh it off as you hand it back to him saying “I don’t need this”. Instead of being embarrassed, he tells you to keep it “…in case you get lucky later”.
You are getting more and more disillusioned with your job and have started venting your frustrations on a daily basis. One day you overhear your supervisors talking about how unhappy your seem lately. You pride yourself on appearing professional, so you are mortified when one says “she has the face of an angel and the mouth of a sailor” to which the other replies “does she kiss her mother with that mouth”?
You have nightmares about your job. Every Single Night! Even the nightmares are better than the reality.

Your turn. When did YOU realize it was the end of the road for a job?

Ocrevus Experience

What to expect during your first Ocrevus infusion.

ivv

Our story in a nutshell:

Boy gets sick
Boy sees multiple specialists
Boy gets diagnosed years later with MS
Boy gets treatment options
Boy chooses Ocrevus infusions

For more details of our medically induced woes, you can check out my previous posts here (the beginning) here (the middle) and here (the follow-up).

If you are reading this post, odds are you, or someone you love, is dealing with an MS diagnosis. Or maybe you are reading this because you are my friend/family and I led you here for detailed updates on how BJ and I are doing (hi Mom).

The first thing I want to make clear is that currently, there is NO CURE for MS. Any treatment your doctor may consider is to help delay the progression of the disease.

There are a variety of treatment options for relapsing/remitting MS (the kind BJ has) and that is what I will be focusing on. For a list of the different types of MS click HERE.

The treatment options for relapsing/remitting MS are currently oral medications, self pills_injections_shots_meds_drugs_mini injection, or infusions. A doctor or specialist will go over the pros and cons of each method, and work with the patient to determine what medication is a good option. It was recommended that BJ start his treatment with the infusion method and the relatively new drug, Ocrevus.

What is Ocrevus?

Ocrevus is an intravenous infusion medication that targets certain white blood cells in the body that have been shown to contribute to nerve damage in people with MS. After the initial treatment, which is split up into two sessions, two weeks apart, Ocrevus only needs to be administered once every 6 months.

The Insurance Hurdle

Ocrevus was approved by the FDA in March of 2017, so it is a relatively new drug on the market. 30,000 people were prescribed Ocrevus the first year it was released. Because Ocrevus is the new kid on the block, and because it comes with a pretty hefty price tag of $65,000 a year, some insurance companies have balked at patients starting with Ocrevus as their first treatment option.

Ocrevus is one of the most aggressive forms of treatment for relapsing MS. BJ and I were warned our insurance company may require him to try another type of treatment first before approving us for Ocrevus. Luckily, our insurance company was on-board with our doctor’s recommendation, and BJ’s treatments are covered 100%.

For under insured people, or those with high deductibles, Ocrevus offers a supplemental plan that will cover up to $10,000 a year in any out of pocket costs. They have an easy to navigate website where someone can sign up for benefits. You can view that website HERE.

Our Ocrevus Experience

Before being treated with Ocrevus, you must find a clinic that is certified to administer the medication. In our case, that was the Guthrie Infusion Clinic in Sayre, PA.

Our first appointment was for 10:00 in the morning on June 21. After checking in with the front desk, we were immediately taken into the back office where the infusion rooms are located. Each infusion room is curtained off for privacy and is equipped with a small television, a recliner for the patient, and chairs for visitors. We had two people assigned to BJ’s care, Adrian and Jim. They were both awesome. They checked BJ’s vitals to ensure that he did not have any underlying illness which could be intensified from the infusion, and they gave us a brief overview of what we could expect.

BJ was then fitted with an IV catheter, and Adrian administered a high does of Benadryl through the IV. This was to help BJ’s body ward off any infection. We then had to wait 30 minutes for the Benadryl to take effect. ocre6

One of the plusses of the Benadryl injection was that the medication went to BJ’s head and gave him quite a buzz. He ended up sleeping on and off for the first few hours of the infusion treatment.

Once the Benadryl had a chance to work, BJ’s vitals were taken a second time, and he was then hooked up to the IV drip with the Ocrevus medication. They started the drip on a slow setting, and would increase the speed of the drip every half hour as long his vital were steady.

Once BJ was hooked up to the IV, we were given a menu to choose our complementary lunch. There was also a kitchen we had free access to with drinks and snacks.

For the next 3 hours, BJ slept off and on, while I read in a nearby chair. Our lunch came around noon, and after our meal I went back to reading and BJ spent some time catching up on social media on his phone. ocre1

The only incident BJ had during the treatment was some profuse sweating. It was undetermined if the sweating was a side effect of the Ocrevus, but it messed with the hand-held temperature checker, and they were unable to get an accurate reading. They slowed the drip down a bit and the sweating eventually subsided.

Around 2:30, the treatment was done, and BJ was unhooked from the IV drip. The catheter was left in his arm in case drugs needed to be administered were he to have a reaction.

We needed to stay at the clinic for an hour after the infusion to make sure BJ was tolerating the drug. Aside from feeling very tired and a bit out of sorts, BJ was fine and we were able to go home. It is very important to have someone drive you to your appointments, as you will not be feeling up to driving once it is done.

A few hours after the appointment, BJ was feeling like he did before the treatment. The only thing we noticed was that he had a hard time sleeping that night as he was up every 45 minutes to use the bathroom. Again, we don’t know if this was a side effect or not.

It has been a few days since BJ had his treatment and he has been feeling good. If you have MS, you understand good-days and bad-days. All of the days following his treatment have been good ones. good day

In two weeks, BJ has to go back for the second part of the treatment, and the protocol will be the same as the first time. As long as BJ tolerates the second treatment, he will start a schedule of Ocrevus infusions every 6 months.

In between treatments, there will probably be follow-up MRI’s to gage the effectiveness of the medication. Hopefully those images will show no new lesions and we can call this a success. I will update this post with a link HERE to any follow-ups once we have more information.

If you have any questions, drop me a line. I would be happy to help if I can.

Life (spouse health)

Mayo Clinic -The Key to Unlocking the Mystery Diagnosis.

“To inspire hope and contribute to health and well-being by providing the best care to every patient through integrated clinical practice, education and research.”

– Mayo Clinic Mission Statement

There is a reason why the Mayo Clinic in Rochester, Minnesota continually ranks number 1 in the world for patient care and treatment. They are innovative, patient focused and forward thinking, and their team based approach to healthcare ensures their patients receive expert opinions across a wide range of fields and medical specialties.

The Mayo Clinic facilities and grounds are soothing, and designed to feel more like a luxury four-star hotel than a treatment center. Their central scheduling model, which gives patients a print out of upcoming appointments, is convenient and easy to read and navigate.

How do I know all this? I tagged along with my husband for appointments and treatments at the famed Mayo Clinic for a week in early May. Below is an account of our experience, and why we would recommend the Mayo Clinic for anyone dealing with a complicated medical issue or diagnosis.

For the background story on how we ended up visiting the Mayo Clinic you can follow the link HERE.

The first thing we noticed upon arriving in Rochester, Minnesota for our Mayo Clinic appointment was just how large the medical compound and grounds were. The Mayo Clinic is made up of a multitude of buildings and wings, each specializing in a different field of treatment. Every building is connected by either an underground pedestrian “subway”, or enclosed “sky tunnels” that also lead to hotels, restaurants and shopping areas. You can pretty much visit all of downtown Rochester without ever taking a step outside.

Map Building Campus

There are navigational maps and “greeters” everywhere to help you find your way from appointment to appointment, and clearly marked entryways and elevators throughout.

If you have some time to kill between appointments, you can pick up a brochure for a self-guided tour of some of the impressive artwork displayed in the halls. You can also schedule a free tour of the clinic and grounds. There is a free museum inside the hospital that you can visit, or you can relax in the atrium and listen to volunteers playing piano and entertaining the crowds.

The Mayo clinic also has an amazing amount of “green space” around the compound where you can sit on benches or chairs in the sun, enjoy a snack from the cafeteria or one of the many restaurants in the pedestrian subways. A lot of people just sat outside to admire the landscaped trees and flowers. Even if you are not a patient at the clinic, it would be worth it to walk the area just to admire the many statutes and architecture on display.

Of course, people don’t visit the Mayo Clinic just for the ambiance, and we were no exception. My husband had an appointment bright and early Monday morning to meet with a top-notch neurologist to try and get a diagnosis for the medical condition that had been plaguing him for years.

Day 1 (Monday)

We arrive at the Mayo Clinic at 6:30 a.m. for our 7:00 appointment with Dr. Eoin Flanagan in the neurology department located on the 18^th floor of the Gonda Building. There is a short line for the check-in desk and it is our turn after a brief wait. The very nice lady behind the counter went over the basics like insurance, and then made a folder with BJ’s name and patient ID on it. She takes all the copies of MRIs, tests, scans and physician notes we brought with us, and hands us a clipboard with papers to complete. We are instructed on the patient website, then directed to have a seat in the well appointed waiting room.

Before I could even get all the information filled out for BJ’s paperwork, his name is called and we are led to the clinic entrance where they take his vitals. Then we are led down a long hallway with doors on either side. Each door has a row of lights that indicate what patient is in the room, and what physician would be treating them. BJ is shown to his treatment room and an assistant comes in to record some of BJ’s information on his computer chart.

Dr. Flanagan arrives a few minutes after the assistant leaves, and begins to review BJ’s records. After talking with BJ at length about his symptoms, he has BJ go through a series of examinations to evaluate his vision, balance, reflexes and strength. He tells BJ that he is leaning towards an initial diagnosis of MS and proceeds to show us the lesions on one of BJ’s brain scans that lead him to this conclusion. BJ’s lesions are a-typical for MS which is why he was unable to get a diagnosis, even after visiting John’s Hopkins in Baltimore. Dr. Flanagan shows us a recent clinical paper regarding lesions similar to BJ’s that have proven to be MS related.

Dr. Flanagan then dictates his notes with us present so we are able to point out any inaccuracies and then outlines what we can expect for the rest of our stay at Mayo. This includes blood tests, a visit with a sleep specialist, a mobility clinic and finally MRI’s of the brain and spine. At the end of the visit, there will be a follow up appointment with Dr. Flanagan and hopefully a final diagnosis.

We leave the treatment room and are directed to the scheduling desk. Dr. Flanagan advises the attendant what he has planned for BJ for the rest of the week. We are again led out to the waiting area, and after a few minutes, we are handed a schedule with appointment dates, times and locations for the duration of our stay. This information also gets uploaded to our patient portal. It is beyond efficient.

The first thing on our schedule is blood work, so off we go to the laboratory, located in the Hilton building. Again, our wait time is short, and soon BJ is giving 9 vials of blood for testing. Then we are off to the sleep clinic, located in the Mayo Building.

Once we check in with the Sleep Clinic, BJ and a few other patients go to a room for an orientation on the sleep test they will be doing that night. BJ is given a machine with a monitor he has to clip on his finger before he goes to bed that night, and he has to manually record any time he is up and awake. This test checks for sleep apnea and other sleep disorders. We check our schedule and see that we are free for the rest of the day. It is now late afternoon and we decide to grab an early dinner before turning in. Before we can even get out of the building, our patient portal notifies us that some of BJ’s blood test results are already available for us to review. Everything so far is negative, and we marvel at the turnaround time for those tests.

We end up walking through downtown Rochester to a funky Mexican restaurant called Hefe Rojo.

The food was just ok, but the ambiance made up for it. While we were at dinner, the rest of BJ’s blood test results came in through our patient portal. All negative. We head back to our hotel room for an early night. BJ set up his sleep monitor and found a Bruins game, while I flipped through a local paper. Tomorrow is another busy day.

Day 2 (Tuesday)

We woke up early and got the free hotel breakfast. BJ packed up his sleep monitor and we head back to the Mayo building to return the machine. Our appointment with the sleep doctor wasn’t until 2:00, so we decided to explore some of the shops down in the pedestrian subway. We eventually made our way to a hotel bar that had a great outdoor sitting area. The temperature is in the 70’s, so we take advantage of it. We would spend a lot of time here in the next couple days.

I discovered a drink called “Citrus Collins” that became my new favorite. Before we knew it, it was almost 2:00 and we head back to the Mayo building for our sleep appointment.

If you have read my post called Free Falling (you can find a link to it HERE) then you already know about some of the issues BJ has been having with falling out of bed at night. Dr. Flanagan thought this issue could be related to the location of some of the lesions on his brain, and sent us to see Dr. Michael Silber for a consultation.

Dr. Silber was a very trippy dude. He had a thick British accent, and a very dry demeanor. But like everyone at Mayo, he was very professional and very knowledgeable. The first thing he did was review BJ’s test results from his sleep monitor. The good news was that BJ did not have sleep apnea, and his oxygen levels throughout the night were good. So the discussion turned to what was causing BJ to fall out of bed three times in the past month.

There is a disorder that is not uncommon for people with brain lesions called REM Sleep Behavior Disorder (RBD). During REM sleep, your body becomes paralyzed to stop you from acting out your dreams. In people with RBD, that paralysis is either absent or incomplete, allowing the person to act out their dreams. Dr. Silber thought BJ could be suffering from this disorder and recommended a comprehensive study at the overnight sleep clinic for that night. But, because of BJ’s anxiety issues which appeared when his illness started, he was not willing to spend the night in the sleep clinic. We decided that we needed to concentrate on finding a diagnosis for the underlying issues, and any sleep disorders could be dealt with at another time.

The sleep clinic was interesting, and worth out time just to confirm BJ did not have apnea.

After leaving the sleep clinic, we headed back downtown to our favorite bar for a drink and to relax and unwind together.

After a couple of drinks, we headed back to our hotel and ate at the hotel restaurant. We didn’t have anything scheduled for the next day, so we planned on sleeping in and then exploring more of the area.

Day 3 (Wednesday)

With nothing on our agenda today, BJ and I decided to explore more of the city.

Rochester, Minnesota is one of the cleanest, safest feeling city either of us have ever visited. I took BJ on a wild goose chase looking for an art gallery I had read about in one of the Visit Rochester magazines I found in our hotel room. After getting lost (repeatedly) in the skywalk, we finally made our way out to the street to orient ourselves. What should have been a 10 minute walk to the gallery turned into an hour adventure. But finally, we found the right street, and the gallery I wanted to visit. Of course, it was OUT OF BUSINESS! I made it up to BJ by letting him choose our lunch destination. He chose an amazing Thai restaurant that had the best Mojitos.

Bellies full, we made our way back to the hotel. BJ’s legs were really feeling the effects of all the walking so he decided to stay in the room and get some rest. Since he saw how safe the city was, he was fine with me heading out to explore a bit on my own.

I found a beautiful river walk path and spent the next hour taking pictures of the scenery.

Back at the room, we made a few phone calls t0 our son and the folks back at home, before heading out in search of some dinner. Since we were still pretty full from lunch, we decided on a light dinner of sandwiches. BJ was scheduled to have his MRI’s the next day, and he was already feeling anxious about the procedure. We decided to turn in early again so we could be well rested for the next day.

Day 4 (Thursday)

BJ’s MRIs were not scheduled until 2:00, so we had the morning and afternoon to ourselves. We decided to head to the Mayo building and grab a cheap breakfast in the cafeteria. After a surprisingly good meal, we wandered down to a sitting area where the ceiling was a glass dome.

We then made our way to the Mayo Clinic museum, where we marveled at the history (and famous past patients) of the clinic.

With about an hour to spare before the MRIs, we decided to relax at one of the Mayo Clinic outdoor areas, where we wasted time checking facebook, and emails.

Before we knew it, it was 1:30, and time to check-in for the MRIs at the Charlton Building.

After filling out the necessary forms, we were asked the standard MRI questions like, have you ever gotten metal in your eye or shrapnel in your body. Satisfied with our answers, we were given fancy blue robes and directed to change out of our street clothes.

I have gone in with BJ for all of his past MRIs and I have never had to change clothes before. Personally, I think I rocked the look.

BJ was scheduled for a total of 12 MRI images of his brain and spine. I was given earplugs and a blanket, and a chair close to the machine. BJ said my being there helped with his anxiety, so for the next 3 hours, I rubbed his leg and foot, trying to give him whatever comfort I could.

Because a side effect of BJ’s illness was tremors, he had to do a few of the scans over because the movement made the images unclear. But finally, around 6:00 pm, the scans were done, and we were changing back into our street clothes.

Exhausted, and with a sore back from being hunched over for so long, we opted for subs for dinner so we could eat back in the room. BJ put on some silly movie, and I again read the local paper. Tomorrow was our last day, and we were hopeful this trip would bring us answers.

Day 5 (Friday)

Our final appointment at Mayo Clinic ended where it had begun, with a return visit to Dr. Flanagan. Since our money was running low, we opted for the free hotel breakfast again. After eating, we packed up our room and checked out. Our appointment was for 11:00, and we hoped to be back on the road for home by early afternoon.

Our appointment with Dr. Flannagan confirmed what he had thought in the beginning. BJ was officially diagnosed with reoccurring/relapsing MS. His a-typical lesions made the diagnosis difficult, but the doctor was convinced based on the results of his latest MRI, a review of a previous spinal tap, and his symptoms.

How are you supposed to act when you find out the person you love has a chronic illness. A million thoughts went through my head. But in the end what I really felt was relief. After years of not knowing what we were up against, we finally had our answer.

Dr. Flanagan set us up with an appointment with an MS Specialist, and she went over BJ’s treatment options with us. There were injections, infusions and medications he could take to help minimize his relapses. Dr. Flanagan’s first recommendation for treatment was a relatively new drug called Ocrevus, which was an infusion once every 6 months.

Armed with brochures and pamphlets and books on MS and our treatment options, BJ and I said goodbye to the Mayo Clinic and started our long journey back to NY.

Our next job would be finding an MS doctor closer to home that could administer BJ’s treatments once we decided how to proceed. If we went with Ocrevus, we needed to find someone certified with administering the drug. Our local doctors back home were not an option. We decided to look for someone at the Guthrie Clinic just over the PA boarder. We liked the fact that Guthrie was affiliated with Mayo.

For now though, we would take the next 17 hours in our car digesting what we know knew, and counting our blessing that we were able to get that elusive diagnosis.

Curious about Ocrevus? You can find a link to this new drug HERE.

Has reading this latest entry left you thirsty? You can find a link to the delicious Citrus Collins HERE.

Life (general), Life (spouse health)

Road Trip!

Counting Headlights on the Highway.

My husband BJ and I started our marathon road trip to the Mayo Clinic in Rochester, Minnesota on Saturday, May 11^th. You can read my post on how we ended up being referred to the Mayo Clinic here.

It was a beautiful day for a drive. The sun was shining, and there was a light breeze in the air. We said our goodbyes to one very sad Rottweiler as BJ got behind the wheel. I settled down in the passenger seat armed with my cell phone and the latest John Grisham novel. The book would remain closed the whole trip.

Hugo giving us his “puppy eyes” as we prepared to leave for our road trip.

We were in for a long drive. Instead of ticking off the hours, we checked off the states as we passed through them, one by one. We played a game I called “how well do you know this state” where we quizzed each other on state birds, or populations or state mottos. Did you know PA’s state moto is “Virtue, Liberty and Independence”? Neither did I.

Our first state, and also our first stop after leaving NY, was PA. I had a winning scratch-off ticket from PA in my car and figured no time like the present. While BJ was gassing up the vehicle, I ran inside the mini-mart and cashed in my ten bucks. Two more lottery tickets later, a full tank of gas, and some munchies, and we were off and running again. (I won $10.00 more bucks on the scratch off).

Our next state was Ohio. We were doing great and making good time. And then this happened.

It seemed like the accident was in slow motion. A tractor on the other side of the road plowed through the median and onto our side of the highway. The truck ahead of us had no time to put on the breaks to avoid a collision. And BAM! Just like that our trip is set back over an hour as we waited for the tow trucks and emergency personnel. The good news was that no one was hurt. The worst part? I had to pee.

We had some time to kill, so we learned some facts about Ohio, like the state tree is the Buckeye tree. That’s why Ohio is known as the “Buckeye State”.

Once the trucks and debris were cleared away, we were off once again. This time as the “Lead Dog”. The road ahead of us was empty, and we made up some time. Before we knew it, we landed in Indiana.

We made a quick stop to top off the gas, and so I could take a much needed bathroom break. The store inside the gas station was filled with Notre Dame University swag, so BJ decided to see how far away we were from the college. Turns out only 15 minutes. Time for a detour. BJ is a huge Notre Dame fan, and going here was like walking on hallowed ground.

We had fun exploring the campus, despite the steady drizzle that started falling, and we took pictures like tourists. We kept waiting for security to shoo us along but it never happened. Side visit over, we jumped back in our min-van and continued on our way.

Fun fact – Indiana does NOT have an official state animal. The state drink is water. Boring. You would think a state that is home to Notre Dame would have Guinness as the state drink.

Around 8:00 that night, we finally reached Chicago. BJ said he wanted to drive through Chicago before stopping for the night. Even at this later hour, the highway was packed with other drivers, but the skyline was beautiful and all lit up. I got my first glimps of majestic Lake Michigan as we drove out of Illinois and into Wisconsin.

Indiana may not have a state animal, but Illinois does. It’s the white tailed deer. and FYI, the state bird is a Cardinal.

As we drive into Wisconsin, I hear “hello Wisconsin” in my head. I think that is from “That 70’s Show”.

The dashboard clock showed 10:00 pm, and BJ and I made the decision to keep driving straight through to Minnesota instead of stopping for the night. We were both a bit wired, and after driving so many miles we figured “what’s a few more”? (It was actually a little over 5 hours more but who’s counting).

We passed a sign announcing that we would be crossing the Mississippi River. I had no idea the Mississippi River ran so far North. For some reason this made me happy and made me think of our cruise out of New Orleans last year. What also made me happy was discovering Minnesota’s state moto is “Forward”. That seemed like a good omen to me.

Finally, around 1:00 in the morning, we were crossing the boarder into Minnesota. It would take another two hours before we reached Rochester, Minnesota, home of the famous Mayo Clinic. By now, BJ and I were both starting to feel the long drive. My body felt numb and so did my brain. But finally, around 3:30 am, we were pulling into our hotel parking lot and dragging our sorry bodies up to the check-in counter.

Were we crazy for making the whole journey in one shot? The state bird of Minnesota is the Common Loon. I’m just going to let that statement sit there with no additional comments.

It was Sunday, May 12^th. Mother’s Day. We had been on the road for approximately 18 hours, and we were ready to drop. I mustered enough energy to wash my face and throw on my pajamas. I think I was asleep before my head hit the pillow.

Our first appointment at Mayo was scheduled for 7:00 am Monday morning. We had a whole day to explore our surroundings and recover from our drive.

We would spend our Sunday drinking mimosas at a Mother’s Day brunch, exploring the above ground and underground pedestrian passageways that circle the entire city, and getting ourselves oriented with the huge Mayo Clinic campus. But all that wouldn’t happen for another 6 hours. Now was our time to sleep, and sleep we did.

Here are some fun state facts we learned from our trip.

State	State Bird	State Animal	State Drink	State Flower	State Moto	State Nickname

New York	Bluebird	Beaver	Milk	Rose	Excelsior or I Love NY	Empire State
Pennsylvania	Ruffed Grouse	White Tailed Deer	Milk	Mountain Laurel	Virtue, Liberty and Independence	Keystone State
Ohio	Cardinal	White Tailed Deer	Tomato Juice	Red Carnation	With God All Things Are Possible	Buckeye State
Indiana	Cardinal	none	Water	Peony	Crossroads of America	Hoosier State
Illinois	Cardinal	White Tailed Deer	none	Violet	State Sovereignty, National Union	Prairie State
Wisconsin	Robin	Badger	Milk	Violet	Forward	The Badger State
Minnesota	Common Loon	none	Milk	Pink and White Lady Slippers	*L’Etoile du Nord	North Star State

* The Star of the North

Life (family), Life (spouse health)

3-2-1 BLASTOFF!

Why we Traveled 1044 Miles in Search of an Allusive Diagnosis!

Road Trip sign with road background May 11, 2019 was a beautiful Saturday morning. A great day for a road trip. It was the start of our marathon journey driving from Upstate New York to Rochester, Minnesota. 1044 miles not counting detours or pit stops. We had a cooler full of drinks and snacks in the backseat of our car, (courtesy of my mom), a full tank of gas, and expectations that ran from optimistically high to “WTF are we doing” low.

My husband, the reason for this trip, was having one of his “good days”, so he slid into the driver’s seat. He was going to take the first shift of our 17 hour drive. In another life, BJ was a professional truck driver, and he was used to driving long hauls. But that was before the tremors, and the muscle weakness and the debilitating fatigue. I don’t know if he felt he had something to prove, or if he just really hates my driving, but he stayed behind the wheel the entire trip. Since all of my offers to share the driving were met with a dismissive “I’m good”, I eventually gave up asking. I made myself comfortable in the passage seat, and began ticking off the States as we made our way West.

Our drive may have started that May, but the story really begins much earlier. So far back in time that I can’t even remember the exact year. What I do remember is taking a day trip with BJ and my folks in early winter to an outlet mall for some Christmas shopping. Our now 13 year old son Micah was just a toddler then. BJ was struggling to keep up with us as we wandered from store to store. He eventually slipped his arm around my shoulders and casually leaned into me for support. That was the first time he told me his feet and legs felt numb and he was having a hard time walking.

But maybe the story goes back even further then that. Maybe this story started a few months after our honeymoon, over 15 years ago. That was when BJ ended up in the ER of our local hospital complaining of electric shock currents of pain running up and down the length of his body. A CAT scan revealed a mass in his neck and a somber physician’s assistant told us it was likely cancer. The next few hours were a blur. While BJ was being injected with Fentanyl for the pain, a volunteer, who was also a cancer survivor, came over to give us a pep talk. A biopsy was scheduled and we were sent on our way with a prescription for Oxycodone, and a million questions going through our heads.

But when the biopsy showed an infection of the lymph nodes, and NOT cancer, we considered ourselves lucky, and closed the door on that chapter. A course of antibiotics and a few weeks rest and things were back to normal. But were they? Was that cancer scare really a sign of what was to come?

After the incident at the outlet mall, BJ began to experience other symptoms. He tried to explain each one away. The increased numbness and tingling in his feet and legs? A result of a bulging disc in his back. The insomnia? That was caused by working third shift. The excruciating headaches were from dehydration and then attributed to a stressful job. When then tremors began in his hands I said enough is enough and we went for a checkup with BJ’s primary care provider who ordered BJ’s first MRI and referred us to a local neurologist.

The results of the MRI were not good. We were told that BJ had two lesions on the frontal lobe of his brain that could be causing his bd18509bfdebbe30245c3673fc6009 symptoms. We were also told that he could simply have been born with those lesions and they may not have anything to do with what BJ was now experiencing. We were instructed to repeat the MRI in three months to see if there was any changes to the images.

BJ was convinced that he was born with those lesions, so we were both devastated when someone from the neurology office called to tell him his follow-up MRI showed his lesions had increased in size. We were told it was most likely a tumor. For the second time in our marriage, we were faced with the very likely possibility that BJ had cancer. As we waited for the neurologist to call us with our next step, we drove down to the river by our house and talked about our future. Our son was now 10 years old, and the prospect of him growing up without his dad seemed all too real.

But once again, the universe was playing tricks on us. The office assistant was incorrect, and the lesions had not increase in size after all. The neurologist apologized for causing us undo stress, and recommended that BJ get another follow up MRI in 6 months.

At this point, BJ was done with doctors and tests and MRI scans. His symptoms were manageable and he went back to attributing any issues to his bulging disc and stressful job. He blew off the follow-up MRI and life went on as normal. That is, until it didn’t.

My husband is a lot of things, stubborn, confident, and determined 13779209-3d-anxiety-word-sphere-on-white-background . He was never an anxious person, and certainly not paranoid. In 2017, on top of all his other issues, BJ began to experience panic attacks. I remember him calling me from work, telling me the walls felt like they were closing in on him. He said he felt like he was going to have a break down. After talking for a few minutes, he settled down enough to finish out his day. But the episodes started getting worse. His heart would race, his vision would blur and one time he even passed out. When it started to seem like he was experiencing mini seizures, back to the neurologist we went. We chose a different neurologist with a no-nonsense reputation, and thought we would finally get some answers.

The new neurologist put BJ through a series of physical tests that had not been done before. These tests examined his reflexes, his motor skills, his strength and his vision. These tests confirmed that BJ was having neurological issues, but they were also inconclusive. An EEG was ordered to test for seizure disorder, and the results were negative. BJ was diagnosed with essential tremors in his hands, and referred to a physical therapist and an occupational therapist to work on regaining his strength. He never noticed a difference, and stopped going to both after a few months.

2017 was also the year that BJ decided to quit his stressful job and start his own power washing business. Things were going good with his new company, and he was happy to put his old job behind him. It was around this time that his dad moved from his home in Washington State to come and live with us in NY. It was a big adjustment for all of us. But once again, his symptoms became manageable, and he only had to see his neurologist every three months to monitor his progress. We were naive to think everything was ok.

In August of 2018, BJ began to experience new and frightening symptoms. The numbness in his feet and legs started to travel up the left side of his body into his neck and face. He was having difficulty swallowing and he was having bouts of double vision. His gait became so unsteady that he started borrowing one of his dad’s canes to get around. I will admit right now that I am a horrible human being. When BJ’s new symptoms started I attributed it to anxiety from starting a new business and having his dad move in with us. I was dismissive when he tried to talk to me about how bad he was feeling, and I made him feel even worse by nagging him about not going out and drumming up new business for the company. I have no excuse for the way I acted, except to say that none of the doctors we had seen up to this point where able to tell us what was wrong with BJ or give us a concrete reason for his symptoms. I started feeling resentful that I had to get up and go to work every morning while he stayed home with vague issues no one could explain. I have to live with that and I try to make it up to him daily.

I was at work when BJ called to tell me he was driving himself to the ER. That should have been my first clue something was not right. BJ HATED going to the ER. Usually I would have left work to meet him there, but I was busy and just told him to call and let me know what was going on. The second time he called was to tell me they were admitting him ASAP. They feared he could be having a stroke. I left work and rushed down to the ER

When I got there, they already had BJ in a room hooked up to monitors and other equipment. I could see why the staff feared he was having a stroke. His speech was slurred, his face looked like it was drooping on one side, and he couldn’t swallow. His double vision was not going away and he couldn’t walk without assistance. They took him in for an MRI and he suffered a panic attack in the machine because of his inability to swallow.

The results of the MRI showed a new lesion on his brain, located in the Pons region of his brain stem. You can read about the functions of the Pons HERE. Of all the places for BJ to get a new lesion, this was the absolute worst. Because this lesion was the cause of all his new issues, we decided to give it a name. We wanted the name to sound foreign and alien, and YAG was born. From that point forward, whenever anyone would talk about the lesion on his Pons, we let them know it was YAG. We got some strange looks, but sometimes you have to keep your sense of humor when dealing with things that scare you to death.

Parts of the Brain Thalamus Pons Cerebellum Medulla Brain stem

BJ was scheduled for a spinal tap to give the doctors and specialists more information for a diagnosis, but the results came back inconclusive. His blood work showed low vitamin D, but nothing else out of the ordinary.

One by one, various conditions were ruled out. It wasn’t stroke, Lyme Disease, or MS. They said no to Sarcoidosis, Parkinson and a host of other neurological issues. When they ran out of neurological causes, the ER doctors finally concluded that YAG must be cancer that had metastasize from another area of BJ’s body. A full body MRI was scheduled to locate the origins of the cancer. This was the THIRD time BJ and I were told he had cancer, and instead of being devastated and scared, my reaction was PROVE IT! They couldn’t. The full body MRI came back negative for any cancer. YAG was still a mystery.

BJ was given a mega dose of intervenes steroids at the hospital and sent home the next day with a referral to yet ANOTHER local neurologist.

Our appointment with the new neurologist was quick and to the point. We were basically told that no one locally could diagnose BJ’s condition and it was recommended we travel out of our area to seek a second opinion. After much research, we chose Johns Hopkins in Baltimore based on their nationwide ratings in the field of neurology.

So in October of 2018, we had our first appointment with a neurological specialist and his team of problem solvers. We took to calling our new neurologist “Dr. House” after the diagnostic expert from the tv show by the same name.

dr-house-wallpaper-20

The first thing our new neurologist noticed, that all the others before had missed, was that BJ’s MRI’s showed multiple old lesions that had healed over the years. This indicated that YAG, and the first two lesions that showed up in 2016, were not isolated. After more physical exams, follow up MRI’s of the brain and spine and enough blood tests to feed all the vampires in Transylvania, BJ was tentatively diagnosed with a demyelinating disease of the central nervous system of unknown origin. To read more about demyelinating disease click HERE.

Without knowing the cause of BJ’s demyelinating condition, treating him could be risky. Immunosuppression drugs carry their own set of risks, and without a clear diagnosis, there was no way to predict how BJ’s body would react to that treatment. The neurologist decided to put BJ on a massive dose of oral steroids for 7 days in the hopes of further minimizing his latest symptom, and that protocol worked. His double vision went away, he regained some strength in his legs and he was able to walk again without the aid of his cane.

A full body PET scan was ordered to look for any inflammation or other abnormalities which could help the specialists at Johns Hopkins pin-point a diagnoses to BJ’s condition, but again, the results were inconclusive. We were told it now appeared that inflammation was the probable cause of BJ’s demyelinating condition, which basically meant the demyelination was a symptom of the disease and not a cause of the disease. But what it really meant was that we were no closer to having any answers.

In February of 2019, BJ got another follow up MRI of his brain and spine. Happily, YAG showed signs of healing. The bad news (and it seems like there is always bad news) is that the MRI showed two new active lesions on his brain, and lesions on his spine.

We were told about a special MRI machine at Johns Hopkins had that could zero in on lesions making it easier to do a brain biopsy. After discussing the pros and cons of this procedure, we decided to pass. Another option was for BJ to try the immunosuppression drugs and hope for the best.

While we were mulling over our (lack of ) options, “Dr. House” and his team were still diligently trying to find us answers. It was near the end of April, 2019 that the amazing team at Johns Hopkins admitted they were unable to offer us a diagnosis. We have so much respect for BJ’s neurologist for wanting the best possible care for fab587-20060817-mayogonda him. Instead of guessing on a possible treatment, or putting him through more tests and scans, he told us it was time to go to “the best of the best”. And that’s how we got our referral to the Mayo Clinic in Rochester, Minnesota.

And that takes us back to the start of our 1044 mile road trip, looking for allusive answers at a world famous clinic. Praying they can help us, because if they can’t….where do we go from here?

I will post a link to my entry on our road to Minnesota HERE once it is ready, and

I will post a link detailing our time at Mayo Clinic and what we found out HERE.

Life (family), Work

The Shoemaker’s Daughter

I come from a blue collar, working class family. My grandmother and grandfather were shoe makers at the now defunct Endicott Johnson factory. My mom would eventually end up working at the same factory.

My Grandparents Nellie and Frank

After getting out of the military, my dad became a cop for the city of Binghamton. He was never promoted beyond patrolman, but it wasn’t for lack of hard work or dedication. One day, while responding to a domestic disturbance call, he was shot in the head and died instantly. I was only 2, and he was 26.

cop

I was taught early on that having a career was for “other people”. If I could find good, steady work after high school that offered me insurance and a chance for promotions, I should consider myself lucky. This advice was probably why I spent 12 years working in a job I hated behind the service desk of a grocery store.

About 10 years in, I decided I could not spend the rest of my life wearing a smock and a name tag, and I started looking into going back to school. By this time, I had worked my way up with the grocery store, and was the assistant office manager. My salary would be about $35,000 by the time I gave my notice; and that was considered “good money” in my circles.

Starting college at 29 made me a nontraditional student (i.e. old).

Because of my age, I didn’t have the luxury of picking the wrong major. I had one chance to get this right. I decided to work towards a degree in paralegal studies, and gave myself a goal of 2 years to complete my associates degree.

My mom though I was crazy to risk my “good job” for a shot at something better. There was no guarantee I would even find a job in my field, or that I would like it if I did. But once you start fantasizing about getting into a violent car accident on your way to work just so you can call in sick, you know it’s time for a life change.

I accomplished my goal, and graduated with a 4.0 GPA in just under 2 years. Not only did I work towards my degree while working 40 hours at my demoralizing job, but I also took on an unpaid internship with the U.S. District Court. It was a heavy load. But I did have a few things in my favor.

I married young (another trait the women in my family share), and during this time, my marriage was quietly falling apart. He was unemployed and enjoyed spending his days reading comic books and getting stoned with our cats, Kiki Man and Odin. I was hyped up on No-Doze and Diet Coke, splitting my time between classes and studying, and my full-time job and part time internship. I had NO life, so there was nothing to balance. But I knew if I sacrificed now, I could have the life I wanted later.

No surprise, the marriage ended up being a bust, but college proved to be worthwhile. My unpaid internship turned into a full-time job offer with the U.S. District Court. I was hired as one of five paralegal to start a new initiative known as the Inmate Litigation Unit. Stay tuned – the stories I have to tell about this job!

Eighteen years and two legal positions later, and I find myself where I am today. Deputy Chief Clerk for a New York State Court. The girl who was encouraged to settle, now has a six figure income, a 35 hour work week, great benefits and a pension plan.

I also have a teenage son, a 135 pound Rottweiler, an entrepreneur husband with an undiagnosed, chronic illness, a goldfish that refuses to die, a lizard that refuses to be held, and a father-in-law that recently moved in with us that likes to gamble and pick up women on-line.

Me, BJ and Micah

Hugo

So how did I balance it all then, and continue to balance it all now? Sometimes just by the seat of my pants. Sometimes not at all. Every stage, from dead-end jobs to satisfying career was a lesson.

Journey with me, and I will take you back to a 16 year old girl trying to handle high school and her very first job as a drugstore cashier, to the present day mother and wife trying to find work/life balance in the real word.

Life (anxiety)

Anxiety Sucks!

ANXIETY. That word gets tossed around a lot anymore. It used to be something almost “shameful”, but now it seems like people wear it as a badge of honor.

While I’m glad that I don’t have to hide my condition from my friends, family and co-workers anymore, the nonchalant way some people use this word, or describe this condition, tends to diminish the seriousness of the diagnosis.

I don’t know how many times I have heard “everyone feels that way” when the topic of my anxiety comes up. Do people think I’m weak because I need medication to control my moods. I like to think I am actually strong for facing my problem and doing something about it. Why live in a state of agitation and anxiety when there is a solution that works for you.

What MY anxiety looks like.

Anxiety is different for everyone, and there is no “one size fits all” method for controlling it. Before I was prescribed Venlafaxine, I tried yoga, meditation, journaling, walking and even a few stiff s me.wine.thansgiving hots and a glass of wine.

I loved yoga. It was amazing to discover what my body could do, but it didn’t help with my anxiety. Meditation sounded great, but as anyone dealing with anxiety knows, sometimes quieting your mind just isn’t an option, and I eventually gave it up. I’m still journaling, as this blog will attest to. Writing has always helped me clarify my thoughts. But when a full blown anxiety attack hits, writing is the last thing I want to do. Writing is more “after the storm” therapy for me.

I love to walk. I walk on my lunch hour, and I walk at home with my puppy Hugo. My mind is settled when I walk and I feel peaceful yet energized. If only I could walk forever. But I can’t, which brings me to alcohol. I want to be able to enjoy a drink as a happy indulgence, not as a crutch to get me through the day. I already have one major issue I’m dealing with, I don’t need to create another.

So that leaves me with medication. While some of my other coping skills may help a bit, when I combine them with the Venlafaxine, my prescribed drug of choice, I feel like a more authentic version of myself. pills

Before I found Venlafaxine, I would experience severe episodes of anxiety multiple times a day. It would start as a little nagging feeling deep in my brain. Something was “off”, but I couldn’t put my finger on it. That little nagging would turn into a restless energy where I couldn’t sit still and couldn’t get comfortable. That would lead to feelings of anger and feelings of depression. My clothes felt tight, my shoes restrictive, and my brain chaotic. I wanted to jump out of my skin, break something, or run away and hide. I was irritable and on edge. All I wanted to do was sleep, but sleep would elude me.

The one thing I didn’t want to do was cry. I was afraid if I started to cry I wouldn’t be able to stop. I was ashamed and I didn’t want people to think I was crazy.

These episodes would happen anywhere and at any time. At work, at a party, sitting in a drive-thru. There really wasn’t ever a “trigger”. But once the anxiety started, I could BE triggered. When I was suffering with an anxiety attack, any little issue I would normally roll with became a full blow life or death situation.

Sometimes it felt like I was outside my body, watching the action from afar. I knew I was not acting rationally, but I didn’t have the strength to push the emergency stop button and end the madness.

I would yell at my kid and my husband, and scream at my dog. I would fight with the news anchor on the television, and ridicule my own reflection in the mirror. I would feel like I was losing my grip on reality.

It could take hours or even days to recover from some of the more intense anxiety attacks. Afterwards I would feel ashamed at my lack of control, and wonder what was wrong with me. In those moments, I hated myself.

In between I was fine, “normal”. I could function, and laugh, and love and enjoy a beautiful day. I could find success at work and be productive and reliable. But hiding my condition was exhausting. I was afraid to let people know what I was experiencing or letting my guard down. At the time, I didn’t know what was wrong with me. I really thought I just might be losing my mind. fine2

My husband tried to help. He begged me to tell him what was wrong. He was afraid I was unhappy, and he put a lot of my problems on himself. Sure, he could be a pain in the ass, but my emotions were not his issue. When I started to notice my moods affecting my son (I always tried to hide it from him, but kids know) I finally decided to try and do something about it. I made an appointment with my primary.

I was ready for anything my doctor was going to tell me, even if it was that I was crazy or weak and overly dramatic. I never expected him to tell me I was suffering from General Anxiety Disorder.

SO What Exactly is General Anxiety Disorder?

According to the Mayo Clinic, the symptoms of General Anxiety Disorder include:

Feeling restless, wound-up, or on-edge
Being easily fatigued
Having difficulty concentrating; mind going blank
Being irritable
Having muscle tension
Difficulty controlling feelings of worry
Having sleep problems, such as difficulty falling or staying asleep, restlessness, or unsatisfying sleep

It was such a relief knowing what was wrong with me. When my doctor mentioned there was medication I could try to manage my symptoms, I jumped at the chance. I have never been one to frown upon popping a pill when it was needed or necessary. My doctor prescribed Venlafaxine in a low dose, that he would step up to a higher milligram in two weeks as long as my body was tolerating the drug. I was lucky, and did not experience any adverse side effects.

What is Venlafaxine?

Venlafaxine is an antidepressant belonging to a group of drugs called selective serotonin and norepinephrine reuptake inhibitors, or SSNRIs. Venlafaxine affects chemicals in the brain that may be unbalanced in people with depression, anxiety and panic disorders.

Almost immediately I started to notice a difference. I wasn’t on edge as much as before, and my shoulders didn’t persistently feel tense. By the second week my mind felt clear. I could concentrate better and I wasn’t obsessing over every little thing. I could still be mad, or sad, but those feelings never escalated. I felt in control. cuise.yoga.me

I could sit at my desk at work without suddenly being overcome with irrational anger or distress. My hands stopped sweating and my moods evened out. I felt like I was Me, only better.

I have been on Venlafaxine for a few years now and it has saved my sanity and possible my life. I am capable of handling my husband’s illness and my son’s teen years without losing my mind. I am able to handle major life changes, like when my Father-in-Law moved in with us, with optimism and a sense of humor. Some days are better than others, but now when I say I am anxious I am talking about a slight feeling of unease, not a life altering condition.

If you are experiencing any of the symptoms I have described, it may be time to talk to your doctor. You don’t have to live with constant anxiety. There is help.

Suffering from General Anxiety Disorder is NOT your fault, but you can control how you manage it. Whether it’s meds, or journaling or meditation, find what works for you. You and your family deserve it.

anxiety cartoon

Life (family), Life (spouse health)

Free Falling

insomnia_sheep I woke up last night to the sound of a loud “thump”. I sat up quickly in bed, heart pounding in my chest. I remember saying “Holy Shit” as I let my eyes adjust to the dark room, which was offset by the glow of a still playing t.v.

I looked down to find my husband of 16 years lying on the floor. He had fallen out of bed in his sleep. Again. This was the second time in the last 4 weeks. I asked if he was ok as he climbed back in beside me. He hit his knee going down, but it was alright. His head landed in our dog’s bed, so no issues there. We made a few jokes about me pushing him out, and then I rolled over and tried to get back to sleep. I had to get up early for work in the morning, and I hadn’t been sleeping well lately.

My husband BJ is a big guy. He is strong and he has a rough exterior. I have been told we make a very mismatched looking couple. But it was his heart that drew me to him in the beginning, (not to mention the leather jacket and “bad boy” vibes). It was his faith in me that helped me decide to go back to college and get a degree. It was his loyalty and devotion that got me past my bad first marriage and taught me what love was supposed to look like. bjcigar

When BJ fell out of bed the first time, about 4 weeks ago, my reaction was pretty much the same. A shot of adrenaline from being woken up so harshly, concern that he was ok, then a few jokes about what had happened. That time, BJ told me he had a dream he was fighting a cougar in our backyard. He went to do a spinning back-kick and literally spun himself off our bed. It was funny then, and I still think it’s funny now.

But last night, things didn’t seem so funny. I laid awaking worrying why my guy kept tumbling out of the sack.

The past few years have not been easy for BJ, or for me. About 4 years ago, BJ told me he was experiencing numbness in his feet and it was traveling up to his legs. But he is stubborn and he insisted it was a result of back issues he’s had since his furniture delivering days.

But over the next few months, his symptoms got worse. His legs went completely numb and he started to have noticeable tremors in his hands. Then the ice-pick headaches started and it was time to see a neurologist.

An MRI revealed lesions in his brain. The neurologist told us it could be nothing, he could have been born with them. I remember we made jokes about his mom dropping him on his head. We made an appointment for a follow-up MRI in three months, and we tried to go on as before. He was doing better and we were feeling pretty good about things when it was time for the follow-up MRI. The results were not good. 38287569_1774422485938102_4178048717015744512_n

A phone call from a nurse at the clinic gave us the bad news. BJ’s lesions had grown in size. We were looking at a brain tumor and possible cancer. We were devastated. We put a call into his neurologist looking for answers, and then we drove down to the river by our house and cried. But the story doesn’t end there. The nurse “miss spoke” and the lesions looked stable. No one could tell us why he had them or what was causing his symptoms, but it wasn’t cancer and he didn’t have a brain tumor. We were relieved.

As the months went on, BJ’s symptoms came and went. Sometimes he felt great and sometimes he couldn’t muster the energy to get out of his chair. This went on for about a year, until one day, the symptoms got very bad.

My husband ended up in the ER for 7 days enduring MRI’s, CAT scans and a spinal tap. He was having trouble walking, swallowing and he was seeing double. The images revealed new lesions, with one particularly nasty one sitting on his brain stem or PONS. We named that lesion “Yag”.

Once again, we were told he had cancer and that it had brain metastasize to his brain. They set him up for a full body scan to locate the cancer so they could begin treatment. Guess what? No cancer. They ended up pumping his body full of IV steroids and the next day they sent him on his way. He was given an appointment with a “top” neurologist in our area to try and get a diagnosis. We were not optimistic at this point.

The neurologist we ended up seeing turned out to be wonderful in his honesty. He said no one in this area was qualified to treat or diagnose BJ, and he would refer us to a larger clinic that had more experience with such complicated symptoms. So off we went to John’s Hopkins to meet with one of the best of the best and his team of experts.

6 Months later leads us here, in my bedroom, with my husband back to sleep beside me. We still don’t have any answers. BJ managed to stump even the experts at Johns Hopkins, so we still don’t have a diagnosis. The latest tests have shown that his older lesions have healed, leaving scar tissue in their wake. However, new lesions have shown up to take their place. He has symptoms of MS and Parkinson, but he doesn’t HAVE MS or Parkinson. What he has is another referral to a specialist, this time with the Mayo Clinic in Minnesota. We are heading there next week.

I can’t help but wonder if him falling out of bed is another symptom of his disease. Is his brain unable to sense the spacial relationship between his body and the end of the bed? Is this a new symptom? Is he getting worse?

I look at the clock, it is 4:30 a.m. I need to get up for work in a few hours, but sleep continues to elude me. For now, this is my “new normal” and I need to keep going. I’m hopeful tomorrow will be a good day.

me.bj

Work

First Job Reality Check

There were two things I couldn’t wait to do when I turned 16; work and drive. As luck would have it, I couldn’t really have one without the other. So, the day after I turned 16, I went to my local Clerk’s Office, and applied for my first set of working papers.

To me, working meant money, and money meant freedom. Freedom to buy what I wanted, freedom to save up for my future, and freedom to get a car. I imagined never having to rely on anyone for a ride every again, I could go anywhere. (Yeah, right)!

Looking back, I have to laugh at my naive self. I was in such a hurry to prove myself, to be an adult. And the really funny thing was that I never understood how much freedom I actually had as a teenager that DIDN’T have a job. My nights and weekends were my own. Sure, I was broke, but so were all my friends. We got creative with our down time. Hanging out at the mall, loiter downtown, or stealing our parent’s booze and getting wasted on the jungle gym a success_job t the park.

But I thought I knew what I wanted, and once I started working, I never looked back. The longest gap in my job history is the 3 months I took off for maternity leave after having my son. He was NOT an easy baby. I was glad to go back.

I got my introduction into the working world with my first job as a cashier at the now defunct Fay’s Drugs. Two times a week and on weekends, I would hand ring in purchases from a variety of interesting people. Interesting being a nice way of saying creepy, nasty, impatient people. Don’t get me wrong, some of the clients were nice. Mostly the little old ladies that came to fill prescriptions and stop to pick up shortbread cookies. But this drug store was not in the best location, and the majority of people that came through the door were “interesting”.

I soon discovered that not only did I loath running a cash register, I was also not very good at it. I sucked making change, I had a hard time figuring out what department an item belonged to, and I got easily distracted. In the end, I usually just hit the “grocery” key for every item purchased. I apologize to the State if they missed any tax revenue because of me.

During the week I typically worked from 5 p.m. until 9 p.m. On the weekends it was 9 to 5. What little money I did make from this job (I think minimum wage was $3.25 back then) I socked away for “someday”.

At 16, I was the youngest person working at the store. My assistant manager was a middle aged woman named Kay. She was all business. The store manager was an overweight younger guy that always looked sweaty. He was obnoxious and unprofessional, and said things that I know now where sexual harassment. But at the time I was taught to not make waves. You did your job and sometimes you had to put up with some bullshit along the way.

I really started to dread going into work. My grades started slipping (I was not the best student back then anyways) and I started picking fights with my mom on the ride into work.

I had been at that job for almost eight months when everything came to a head.

It was a Friday night and close to closing time. A drunk, older man came to my register to check out. Even though he was obviously plastered, he was still nice. I chatted with him for a few minutes while I rang him out, like I would do with any customer that came through my line. I didn’t know it, but the store manager was standing off to the side, and he was watching this interaction.

When the drunk guy left, it was 9:00 and time to lock up. The only people left in the store was Kay, the store manager and me. As I was walking back to the locker room to get my things, I heard the store manager say to Kay, “I bet she was making a date with that guy. Probably trying to earn a little extra money on the side”.

Now, I may have been a bit naive, but I knew what he was implying. And even at the age of 16, I knew I didn’t have to put up with his shit. The crappy, low paying job that I hated, was not worth my free time, my grades, and especially not my self respect. I found Kay and quit on the spot. jobcrushingsoul

Kay told me she didn’t blame me for quitting. I could use her as a reference even though I was not giving two weeks notice. At the time I thought she was being so nice. Helping me out of what she knew was a bad situation. Looking back, the way she handled things just pisses me off. Kay knew what I was enduring at the hands of Mr. Sweaty Boss. But she let a 16 year old girl deal with a hostile environment when she knew it was wrong. Why? To protect her own crappy job?

In all fairness, women were not as empowered back then as they are now. I didn’t really know Kay, or her situation. And when I left that night, feeling lighter than I had in months, I let the door close behind me and I never went back. Even after the drugstore closed down, and a mini-mart was opened in it’s place. I never went back.

My take away is this:

Even at a young age, we know right from wrong, and we know when a situation is bad for us.

We need to trust our own instincts and intuitions, and be our own best advocate.

A great job is worth fighting for, a crappy job that zaps your energy and motivation can ALSO be worth fighting for depending on where you are in life. But it’s also ok to walk away sometimes.

Women need to stick together in the work force. And older workers (that would be me now) should help mentor younger women as they navigate the work environment.

There is power in numbers and men like Mr. Sweaty Boss need to learn women will not be pushed around.

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Welcome to my World!

My name is Tracy Allen. I’m a 48 year old successful career woman, wife and mother. I’m also a work in progress, my own worst critic and two anti-anxiety pills away from the breakdown lane.

People that know me seem to think I really have my shit together. Someone that has figured out how to have it all (and then some). But I have a confession to make. Sometimes I feel like a fraud.

Don’t get me wrong, I love my life. I even have days when I feel as confident and capable on the inside as I try to express on the outside. But let’s be real. Life can be tough. Life can wear you down, steal your energy and make you doubt every decision you ever make. And just when you think you have it all figured out…here comes the next life changing event just waiting to drop you to your knees.

Now, try mixing that crazy life with a dead-end job. I have been there. Or try navigating a challenging career without neglecting your family, your goldfish or your sanity. I have been there too.

But good new! It does get easier. Those lessons learned as a 16 year old cashier in highschool can help you forge ahead as a 40-something business woman.

So no matter where you are in your life and career, maybe you can take something away from the mistakes and triumphs I have made in my own journey. And as my career gets brighter, but my life more complicated, we can explore things together.

Good, bad or ugly, this is real life. Let the balancing act begin.

Work/Life Balance for the Anxious Gal

Honest Life Strategies for the Late Bloomer, Under Achiever and Seriously Anxious Modern Girl.