What the Blog

There is so much I want to say and this is an extremely difficult post for me to write. I love writing, it is a passion of mine that I no longer indulge in on a regular basis. The title of this post "Runaway Trains" is how I feel. I feel like we as a country, the United States is on a train that has lost control and will shortly implode. I don't want to offend anyone but to include all. This is not realistic and I have a few things to say and hopefully the people I do inadvertently offend can find forgiveness in their hearts.

Over the last year I have watched in horror as seventeen Republican Presidential hopefuls dwindled down to one. A man I never really "liked" but thought was an amusing on the Apprentice. I used to watch weekly with my mother and we like many millions across America would cackle and laugh when he would bang his hand on the conference room table and yell "You're Fired" pointing at the contestant on the chopping block for that episode. It never dawned on me this man could one day be the major Republican party nominee for President of the United States.

I was horrified the day he called Mexican immigrants rapists, shocked when he said to ban Muslims, I could not believe he called POWs losers or that he would publicly mock a disabled reporter. I wondered when enough would be enough after all the times he made fun of and made derogatory remarks about women he didn't like, I thought after he said an American Judge wasn't impartial because of his Mexican heritage, but it wasn't, just like saying women should be punished for abortion hasn't been enough. He described in detail sexual assault to unsuspecting women because he is famous and it is OK in his mind because he is famous, yet people still believe in him, and are in fact voting for him. This is a man who encouraged espionage from Russia, who asked why we can't just "nuke" ISIS and who also said it is OK to torture and kill innocent women and children in Muslim countries.

I know why you are voting for him, you want change, you want your jobs back, you think he is going to STOP abortion in America, you think you will have back something you used to have OR a dream of something you think should be. "Make America Great Again" is a lie, it is turning back time before there were equal rights, where women were home and men worked. We have progressed from this America, there is no going back to the past, there is only the future. If you want your jobs back, then lets start with Mr. Trump, perhaps he should have ALL of his products produced in America, instead of China effectively bringing millions of jobs to America, but he won't since he makes a higher profit and pays less taxes over there.

Conservative Christians, I know why you are voting for him, you don't want any more babies "killed", you don't want other religions influencing or moving in on what you believe to be your culture. I want to remind you Christians you would have NO religion if it wasn't for the Roman Catholic church you all seem to despise. If it wasn't for the Romans spreading Christianity throughout Europe you would be Pagan, Buddist, Jewish, or

wait for it

Muslim.... Let that sink into your brains. Change is bound to happen one way or another but ultimately, it has benefited you whether or not you've realized it.

This year I have seen countless articles on both Clinton and Trump, many disturbing, many truthful and many not. I have had to dig through vitriol and rhetoric to find the real story and source to figure out what is actually going on. I took the time to do this to make an informed decision. What dismays me is when I post my opinion, as a statement I wrote or as a meme, I am attacked. I am told to "leave", I am told I am lazy, wanting nothing but government assistance, I am told I am a murder, I am told I am wrong.

I am an American with a rich Italian heritage, I have a RIGHT to my opinion, I have a RIGHT to make my own choices. I have a RIGHT to practice any religion I want. I have a RIGHT to purse life, liberty, and happiness. I have a RIGHT to fully believe in the candidate of my choice, I stand behind that candidate and fully believe in her. While you may not agree with me, and I know many of you do not, it is my choice, my right. When we give up our rights we lose ourselves and then we will lose our country. I am America.

#Imwithher

This past Sunday I woke up as I normally do. My husband helped me sit up as it is still difficult for me to do on my own two weeks after having my chest cracked opened to remove my thymus. He graciously handed me my daily morning meds along with a steaming cup of coffee, while I fumbled for my iPhone. This little device is my lifeline to the outside world. I read the "newspaper" on there, I check my various social media accounts, I check and respond to email, and I communicate with my loved ones on a regular basis with this small piece of technology. I woke up to pain, in my own body, but in the world as well.

A glaring, horrifying pain, one that is common in our country. There was a singular moment in time, where a sick mind broke, and in that singular moment he murdered innocent people. There are so many ways to respond to this hate that is played over and over on the television and our social media feeds. For me it can physically weaken me from the additional stress of empathy and sympathy. MG is one of the many autoimmune diseases that stress directly affects. So how does one respond? Do I turn off my television, do I go off the grid of social media, or do I share and pray and raise awareness of the heinousness of this hate crime? If you follow me on my blog, there is a good chance you follow my Facebook and you know that I chose option three. I do NOT believe in hate, I do NOT believe in tolerance, I ONLY believe in acceptance.

I worry for my very close and very loved LGBTQ+ friends, I worry for their safety walking down the streets, and I worry for their safety inside of a place where they should be free from persecution, their beloved clubs. For the first time, I begged my friends not to go to pride this weekend, because I cannot imagine a world without them in my life. I am being selfish, but I love them and don't want anything to happen to them. They are going anyway, but will be checking in with me so I know all is good.

I worry for my very close and very loved friends who also are Muslim. I worry for their safety walking down the streets and I worry for their safety inside of a place where they should be free from persecution, their beloved Mosques. No one in America should feel threatened or fear to practice their religion. We are a nation based on freedom of religion, why is there a fraction of Americans willing to take away this right? What has happened to us? Where has our acceptance gone?

I grew up in the Catholic church, we went every Sunday that I can remember as a child. I also participated in CCD and Peer Group. What I don't remember is being taught hate and intolerance, because I wasn't. I was taught Jesus loves ALL, Jesus wants peace on earth, Jesus is compassionate and we were to help those in need. My heart weeps at the loss of life from this singular moment in time. My heart weeps from all the hate and fear that enthrall the people of our country. My heart weeps because the LGBTQ+ and Muslim communities are being shunned for being themselves.

My heart weeps for every damn singular moment in time that innocents are killed just because.

The day I was diagnosed with Myasthenia Gravis, the staff neurologist told me to be happy I had MG instead of MS. He told me this was one of the more manageable neuromuscular autoimmune disorders and that I could lead a fairly normal life with treatment. Now that I knew what was wrong, I mapped out in my head what I could expect, because in my mind the meds would make everything ok. They didn't and brought along problems of their own.

I was put on Prednisone and Mestinon. Prednisone is a steroid which suppresses the immune system to keep my body from producing antibodies which attach my neuromuscular junction causing muscle fatigue and weakenss. Prednisone has horrible side effects, a few are weight gain, osteoporosis, depression, anger, and hair loss. Mestinon is a drug which makes the receptors at the neuromuscular junction work better to receive signals from the brain. Mestinon isn't quite as bad as Prednisone, but it too has side effects and is hard on the stomach.

After being in the hospital and returning to work, I was told by a regular neurologist that I could not work until I became stabilized. I notified the company I worked for, I did not qualify for FMLA or Short Term Disability as I had not worked there for 12 months. I lost my job less than a month after my diagnosis. I learned quickly that my life will never be normal again. Some days I felt great, I could go to the store and run errands to come home and cook just like I always did. Some days I could not get out of bed. I began to gauge how good a day would be based on if I could brush my hair out, if I was too weak to brush my hair I knew I would be in bed, if I could brush my hair I started planning everything I needed/wanted to accomplish for the day.

I began thinking, am I ever going to be able to work a regular job, how am I going to make money to survive? My husband works, but doesn't make enough to pay our bills combined, would we have to sell one of our cars, or move to a cheap apartment? I know material things shouldn't matter, but I worked hard for my material things and I don't want to give them up. So I have decided I will not go on "disability" even though I am disabled. I am limited in what I can and cannot do, but I am not ready to give up and leave the workforce. I picked up a job doing some part-time work from home for an awesome dog groomer and have a full time customer service position starting that is strictly from home at the end of June.

June is Myasthenia Gravis awareness month, throughout the month I am going to document my diagnosis and my treatment to help raise awareness of this devastating disorder.

Till Next Time:
T.

I am lucky it only took about six weeks to find out I had Myasthenia Gravis. Before I started having symptoms, I was working full time, going to school (online) full time, and fostering/transporting dogs (sometimes cats) in my limited spare time. I generally would drive on Saturday and Sunday each week to help get these animals to their foster and furever homes. My symptoms began with generally being tired and some blurry vision while driving.

I am a bit of a hypochondriac and will go to the doctor if I feel like something isn't right. About a week after Valentines Day, I was feeling bad, tired, blurry vision, and my leg was achy. I went to my primary I had seen for eight years. She said it was probably an inner ear infection and that I pulled a muscle in my leg and put me on some meds. Over the weekend, I just got worse, driving to and from Cookville from Knoxville on Saturday and Sunday just pushed me over the edge and I started to experience double vision. I called my primary on Monday and she told me to go to the eye doctor to see if they could figure out why I had double vision.

My eye doctor did all the tests and noticed I had some peripheral vision loss in both eyes and decided to order an MRI to be on the safe side, although he didn't think it was anything other than my eyelids beginning to drop from age. The MRI of my brain came back clear and my primary at that point said my symptoms were severe anxiety and put me on a new antidepressant medication. I gave the medication a week to get in my system and during that week I progressed quickly with additional symptoms. I lost the ability to speak clearly, I lost the ability to swallow food, I had double vision more often than not, and was weak all over. I had a constant dull headache and slept constantly when I wasn't at work. I didn't know what was wrong with me.

I went to my mothers primary as I lost faith in mine. She did a slew of blood work, could this be an allergy? Was it Lyme Disease or Lupus? Could I have Gillian-Barre? The MRI was clear and did not indicate MS, but could an MRI miss MS? She ordered CT Scan of my head, an X-ray of my chest and as test after test came back clear, she decided to refer me to a neurologist because she didn't know where else to turn. The wait to get into see a neurologist was months, finally my mother and sister wore me down and I left work on March 22nd and went to the ER in hopes of seeing a staff neurologist to hopefully diagnose me and on the path to recovery.

I walked in the ER presenting as if I had a stroke, slurred speech, drooping eyelids and facial muscles, difficulty walking and using my arms, extremely weak and fatigued. Luck was with me that day, the ER doctor had seen Myasthenia Gravis on a few previous occasions in his twenty year career. He quickly consulted the staff neurologist and they performed a Tensilon test, a test which quickly confirms if one has MG or not.

Testing me for MG was a big deal, there were many doctors and nurses in the room, it is so rare I could potentially be the only case some of them will ever see in their careers. The Tensilon test was positive and my blood was also sent to Mayo to test for AChR antibody, which came back positive a week later.

June is Myasthenia Gravis awareness month, throughout the month I am going to document my diagnosis and my treatment to help raise awareness of this devastating disorder.

Till Next Time:
T.

There is so much I want to write and share with everyone. I honestly do not know where to begin. As you all probably know by now, I have Myasthenia Gravis. It is so much more than just an "autoimmune disorder". Right now MG, rules my life, even though I have been trying to keep some semblance of normalcy. It steals my strength and my ability to do what I want when I want. It has been devastating for me to have this.

I know it could be worse, but that doesn't make me feel any better. I want my life back, I want to get up get in my car and drive just because I can, but I cannot do this any longer. I want to go lay in the sun for hours on end and have the heat not affect me. I want to do yard work without feeling like I am dying 5 minutes into it. I want to brush my hair without my arms getting tired. I want to take my dogs on walks and go hiking. I want to be me again.

Last week, I had my thymus removed by having my sternum cracked open. It is just as bad as it sounds, it is the same surgery as someone goes through for open heart surgery except they were in my chest instead of my heart. It to date, was the most agonizing pain I have ever experienced. There is a small chance my MG will go into remission by having it removed and to me it was worth the chance. I won't know for a couple of months if I am one of the lucky few and will be blessed with remission or not.


For now, I am being very careful not to overdo it, my mom and husband have been taking care of me and keeping me from mundane activities like reaching for a glass on the top shelf. I have been sleeping 12 plus hours a day and allowing my body to recover from surgery and heal. I want to write about my journey with this, but haven't had the energy, but slowly it is coming back to me and I will post more on what has been happening with me.

Remember, June is Myasthenia Gravis Awareness month, by helping raise awareness more research will be conducted and hopefully a cure can be found. Please read up on what Myasthenia Gravis is by going to the Myasthenia Gravis Foundation of America page.

Till Next Time,
T.

This morning, I had to get up at 5:30. Now don't get me wrong, I am a morning person and regularly get up between 6 and 7 daily. I used to be a night person, going to bed at 3, 4, or 5 in the morning, but I grew up. I got a job where I had to work in the mornings and I learned to slowly morph into being a morning person. Most days I don't have a reason to be up so early, but today I had to be at the doctor's by 7:30 and wanted to make sure I had enough time to drink coffee, take a shower, and make myself presentable. I haven't been feeling well the last two days and needed to pad my time so I wouldn't run out. 

As I arrived to the doctors office at 7:30, I felt a little dizzy and uncomfortable, but if you looked at me you would probably tell me I looked good today. I look good most days, and only in the rare case do I "look" as bad as I feel. Today my appointment was with an endocrinologist, to followup on a thyroid nodule seen on a CT Scan while I was in the hospital in March. It was the first time I had been to this kind of doctor or specialty. I also found out that there was still $541 left of our $6000 deductible that had not been met. Goodbye $300 with only 1 cup of coffee in my system and struggling to stand up straight while listening to the lady behind the counter drone on as I hand her my card, just charge it, I'll deal with this at later date.

Amazingly for a first appointment, I was quickly brought back and met with the nurse for the specific doctor I was seeing, She took all my vitals, went over my history, etc.. Then I waited 20 minutes to actually see the doctor, certainly not awesome, but it could and has been so much worse. When he came in, we talked about why I was there, how I have been handling the Myasthenia Gravis medications and then he said it.....

"I want to do a needle biopsy of the nodule on your thyroid"

Um... what?? You want to put a needle in my throat? Hmmm, I don't know about that. He then explained how it will give one of 5 results to the nodule on my thyroid:

1. It will show it is cancer
2. It will show suspicion that it is cancer
3. It will show it is benign
4. It will show it is a-typical
5. It will not be a good biopsy and will have to be redone. 

So, I put on my big girl grin and let him put a needle in my throat. Keep in mind, I was having a "foggy" morning and couldn't remember if it is Novocaine or Lidocaine that is on the MG no no list of medications to take, so I did it with just topical numbing like a boss. I also only had to be stuck 1 time not 2-3 times because I am very good at not moving with a needle in my throat. Just so you know, it hurts to have a needle in your throat. There was a sensation that it was in my ear, so I am hoping the results will be # 3 and nothing will have to be removed, because I feel like it will be painful recovery-wise.

The reason I went ahead and let this guy stick a needle in my neck... I have an appointment next Tuesday with a Cardio-thoracic surgeon to schedule removing my thymus, in results 1, 2, and 4 I will also have to have my thyroid removed, if that happens, I want the ability to ask the surgeon if someone in his practice can also remove my thyroid at the same time. 

I've been home since around 10:30 this morning, and have been in bed the entire day with my laptop and Hulu watching Parks & Recreation since I physically cannot do anymore today. I did think ahead and throw dinner in the crockpot so we would have something to eat tonight. I feel bad, I have brain fog, and it took HOURS to write this post. Here's hoping that tomorrow is a better day. 

It's been 45 days since I was diagnosed with Myasthenia Gravis. 45 days ago, I had never even heard of MG (the acronym for Myasthenia Gravis). MG is a neuromuscular autoimmune disease, it affects the voluntary muscles of the body. In my body, I have Bulbar MG, which means it affects my facial muscles, swallowing muscles, speech muscles, arm muscles and leg muscles. My body produces an antibody that attacks the neuromuscular receptor making it 80% harder for the muscles to respond to the signals my brain sends out.

The Back Story:
Back in February, I started having some issues with driving, my eyes would get tired and my vision would get a little blurred. I figured I was overdoing it and tried to cut back on everything going on. I was working full time, going to school full time (an online program), transporting dogs to foster and forever homes every weekend, and fostering a dog in my own home as well. So I started to cut back on transporting. I started to get double vision and freaked out, I called my doctor and she told me to go to the eye doctor to get checked out. I did, and he noticed my eyelids drooping a little bit, suggesting an MRI to be on the safe side, although he didn't think it was anything to be concerned about.

I had the MRI on my head and all came back normal. By this time, I was having a hard time swallowing food and sometimes when I would talk, my speech was slurred and sounded funny. I went back to my doctor, she said it was severe stress and gave me an antidepressant. It didn't help. My family was worried about me, I was worried about me, I thought maybe I had MS or something along those lines. I went to my moms doctor for a second opinion, she ran a full blood panel, allergy panel, ordered a CT of my head and a chest X-Ray, everything came back clear (expect I am apparently allergic to shrimp - pretty disappointing in my opinion). She decided it was time to refer me to a neurologist to see what was going on as clearly it was not just stress and anxiety. Here in Knoxville, it is almost impossible to get in to see a neurologist without having a diagnosis and it was going to be months before we could get in to see someone.

On 3/22/16 - a particularly bad day for me symptom wise, I left work early and went to the emergency room at my mother and sister urging me to go. At this point I had been having symptoms for over 6 weeks, weakness in my arms and legs, I couldn't eat solid food and basically living off smoothies and soup, I sounded slurred and incoherent when speaking, my face was drooping and I had severe double vision daily. I could barely hold my head up and my back/neck constantly hurt from the effort. I walked in presenting as a stroke victim.

I was lucky, the ER doctor, had seen Myasthenia Gravis a couple of times in 20 years of experience and he immediately suspected that is what I had. He called the staff neurologist and they both performed a Tensilon test. If positive, the Tensilon (a IV medication) immediately stops all symptoms for a few minutes. I am not going to lie, I felt great for 5 minutes, the first time in months that I felt normal. They also sent my blood to the Mayo Clinic to test for the antibodies that block my muscle receptors (these results took a week to come back, but I also tested positive for the antibodies). We had a diagnosis. I was admitted to the hospital overnight, and started on a high dose of Prednisone and Mestinon. Prednisone is a steroid that suppresses my immune system to keep my body from creating the antibodies and Mestinon makes my muscle receptors more receptive. The medication helps but I am still weak, I get exhausted easily and feel like I am walking through water, I can barely drive and the grocery store is the only outing I can handle on my own.

It has been 45 days since I was diagnosed. Everything in my life has changed. I no longer have a job, I lost it because of this diagnosis. I took a three month break from school and have two major surgeries coming up. Thankfully my husband works and we are barely scrapping by. I have a wonderful support system with my family. My goal is to track what this disease has done to me while I go though medical treatment and hopefully into remission. There is so much more that has happened. But for now, this is the beginning of my new life and journey with Myasthenia Gravis.

Till next time,
T.