Something wicked happened on this day 38 years ago. Something awful. Something horrendous. Something I will remember for as long as I live.

38 years ago I awoke to Jane, my friend and roommate screaming hysterically. Her cries were that like none I had heard before. I raced to her room to find her panicked, ashen, sobbing. Unable to really get the words out, she finally told me “my brother is dead.” She kept saying “I know that bitch did it.” She was hysterical so I really didn’t put it together.

Despite better judgment, she raced to her parents home that was only a few miles away. I was left to try and make sense of what just happened.

Her brother had recently married. She actually had worn black to the wedding. And the most gorgeous black shoes. They were Halston. I still remember those shoes. She wasn’t in favor of the wedding. She wasn’t a fan of the bride. There was history yes, but it was more than that. She had a deep abiding feeling of dread quite honestly. I remember the wedding day and seeing her off. She sincerely was attending only because she loved her brother. But, she truly didn’t approve of the marriage. She would attend as a good sister. Letting her stunning, black ensemble speak for her.

Now, with those words “I know that bitch did it” in my head, I began to wonder. Was she right? Had she known something that wasn’t evident? We soon found out.

It turned out, she was right. Her brother had been shot in the back of the head while sleeping. By his new wife. She had initially attempted on the 911 call, to claim he committed suicide. Then, when the police arrived, she claimed there had been a fight. A struggle ensued and the gun “went off.” Then she went back to the suicide claim. The problem was, he had been lying under undisturbed covers on the bed. On his dominant side.

Oddly, she was not taken into custody at the scene. He was rushed to a hospital as he actually was still breathing but, sadly expired upon arrival.

Shortly thereafter, his murderer checked herself into a mental health facility. This made it impossible for the police to arrest her or even question her. She also retained counsel.

Meanwhile, his sister, Jane, was shattered. Her premonition if you will, had come to pass. Her only brother was dead. Murdered by his wife. Her parents were shaken to their core. Their despair was palpable. How do you move on from this? Murder is so different from other loss as I came to learn. There are so many other emotions tied to it. So many unanswered questions. And it’s so immediate. One minute you’re sleeping and the next minute you get a phone call telling you your brother has been murdered. It’s complicated. And that’s on top of the devastation.

Finally, his murderer was arrested and a trial ensued. It’s the only murder trial I’ve ever been a part of, and hopefully, it will remain that way. Because that’s the other issue with murder. It’s not over the day of the funeral. There’s a trial to go through. Pictures. Horrific pictures. Testimony. Painful testimony. All delaying your ability to grieve. Forcing you to revisit the horrendous loss you’ve suffered. The loss thrust upon you.

In a bizarre twist of fate, it turned out I had access to information about a defense she was putting forth. She initially was claiming she was mentally unstable. I actually worked for the mental health agency that her employer contracted with for services. I quickly passed what information I could to the prosecutor.

Somewhere along the line, that defense fell apart. As did her others. She had hired and fired more than one attorney, making accusations of sexual misconduct which were untrue.

We went to court and I sat with Jane as she had to listen to the most heinous lies put forth by this woman. It was torture. Absolute torture. I carefully took notes. I answered questions for Jane and her parents when needed. I did what I could to support them. I just wanted them to get through it.

Then came the threats. She actually threatened the family. Both verbally and in writing. This was more than Jane could take. What is also so complex about murder is the number of victims. Jimmy was dead. He was her first victim. But, Jane was also a victim. As were her parents. The stress, grief, anxiety and sheer horror of the situation took a tremendous toll on each of them. And would forever. But now, threats? Actual threats? This was too much.

I awoke one night to find Jane missing. She was not in the house, her car still in the driveway, but she was gone. I panicked. Had Rita made good on her threats? The phone rang. It was Jane’s mother. Could I run down to the gas station and get her? Apparently, she had wandered down the street in a fog. I quickly got in my car and went to find her. She was not in good shape. She was in her pajamas, definitely not functioning well and absolutely frightened. I brought her home and got her to bed. But I worried. How was she ever going to recover from this? I sat up and watched her. Ensuring she didn’t wander off again.

Finally, the trial ended and a conviction was delivered. The judge took only 2 hours to render a decision. Guilty of first degree murder. I honestly don’t remember the sentence but I believe it was life. They had proven it was murder. There was some relief but there was no joy. Jimmy was not coming back. A brother gone. Taken away by a woman who simply was unhinged. A son lost to a murderer. It was somber walking out of court that day.

Life went on. I watched as they tried to assemble the shattered pieces. My heart breaking at the little reminders of that awful day.

And then one day the family was notified that Rita had escaped from prison. It was as if we were right back there, that morning. She had continued to make threats. So, now what? What exactly do you do when a murderer has escaped and you and your family are a target? You have extreme anxiety. And that’s exactly what happened. Any progress that had been made, vanished in that moment.

Thankfully, she was caught fairly quickly. Everyone could relax again. Somewhat. But, it certainly left everyone wondering what if? What if it happens again?

Eventually, Jane moved home with her parents. I think she felt safe there. And I certainly couldn’t blame her. After living through the experience with her, I understood her grief, her pain and her anxiety.

Finally, Rita died in prison. But, it was after many years. Many years of anxiety for Jane and her parents. Finally, Jane could at least feel safe. The problem however, is as a victim herself, Jane will never really feel “safe.” And the grief, the loss, the pain? That will never leave. The trauma of this day? That too will never leave her. It will live on. A painful reminder of the trauma she endured.

I awake every October 1st and think of that morning 38 years ago. Every year. It’s the first thought I have. Like a movie that plays in your head. And I think, if it’s like this for me, I can’t imagine what it’s like for her.

So for her, for her brother, this story is being told for the first time. We will never forget him. We will never forget you Jimmy.❤️

Recently, after searching desperately for a safe, vaccinated hair stylist, I found one. I hadn’t had a haircut in over a year. It had become an unmanageable situation. Taking forever to dry my hair between spasms. Then flat ironing. Ugh.

I was shocked at how many hair dressers were not vaccinated. I received varying excuses. And that’s exactly what they are, excuses. Because barring the very rare medical exception, there is NO reason to not get vaccinated.

For me, it’s literally a matter of my mortality. I’ve received 3 doses of the Pzifer vaccine. However, as an immune suppressed patient, I’ve developed no spike protein antibodies in response to the vaccine. Leaving me unprotected. Being also immune compromised, that places me at very high risk. Both for contracting the virus as well as a very poor outcome. Meaning, death.

So, I reached out to an old hair stylist I knew. He was vaccinated. His husband (this is important) is an ICU nurse. He was happy to accommodate my needs. I went feeling confident that I would be safe. I was in for a big surprise.

Upon arrival, he came out to greet me at the car. No mask. I thought, okay, he’s outside and probably thinks he’s fine. I asked if he had a mask for in the salon. He grimaced. “But I’m vaccinated!” I explained that even though he was vaccinated, he could still be infected and an asymptomatic spreader. I further explained that I was extremely high risk and couldn’t be indoors with anyone unmasked. He actually said “If I had known I had to wear a mask, I wouldn’t have done this.” I bit my tongue. But I thought, what if your surgeon said that to you just prior to surgery? He did put on a mask. We began and it got worse.

As he began to cut my hair, he began to talk about his political beliefs. A married gay man, who was a….wait for it….Trump supporter! My head spun. How?! The very people who want to undo your very rights to be who you are and you support them? Unfortunately, 1/4 of my head was cut or I would have left.

Then it really got ridiculous. He mentioned he had read about the State Trooper vaccine mandate and how unfair it was. Now, I had to say something. These were MY rights and my health that was impacted. You want to risk your right to gay marriage? Go right ahead. But be sure to let your community know you don’t support them. However, I will NOT sit silent and allow anyone to place my life at risk.

I finally stopped him. I explained that yes, I believed that anyone who has contact with the public needs to be mandated to be vaccinated. I need to know that if I come in contact with them, I’m protected. His response? “Well, just stay home and don’t go anywhere.”

At this point my head was 3/4 cut or there may have been a stabbing by scissors.

Telling someone who has been living in solitary confinement for 20 months “Just stay home and don’t go anywhere” is quite risky. We’re ready to snap as it is. You add abject stupidity and outrageous selfishness? I don’t know that we can be held accountable for what happens next.

Here’s the big picture. And don’t take my word for it, go read actual epidemiologist’s opinions. This virus is not going away. That ship has sailed. We had an opportunity to get it under control but we missed it. And we continue to miss opportunity to control it because people refuse to simply behave responsibly.

Vaccines are safe. Again, don’t take my word for it. Go look at the numbers! With all those doses given, if it wasn’t safe, we would know! https://coronavirus.jhu.edu/vaccines/international

Stop being petulant children! We know masks work. Wear one when appropriate! You’re not going to die because you have to wear a mask for a short period of time! I however, will die if I contract Covid.

Stop being selfish pricks! People like myself are entitled to also live our lives. We’re entitled to one day see a restaurant again. To go to a store again. To get a Goddamn haircut when needed. These things can’t happen if people continue to behave irresponsibly. If people don’t get vaccinated.

You want to scream and stomp your feet about your rights? What about my rights? My right to move freely and safely within my country? You do not have the right to infringe on my rights by choosing against public health. Public safety. When your choice directly impacts me and my safety, I view you as a threat. And at this point, you’re a threat to public health as well.

So why don’t we flip the discussion. You want to choose not to vaccinate? Not to wear a mask when appropriate? I suggest you just stay home and don’t go anywhere. Enjoy your isolation.

#Vaccinate

On January 27, 2020 I ordered my first box of masks. The date may surprise you but, I’d been reading the research coming out of Wuhan and Europe. As had my neurologist. Given I’m severely immune compromised, it was decided I would begin taking precautions and begin lockdown. January, 2020.

I watched in sadness and horror as our country slowly realized the threat we faced. Too slowly. Many will not remember but, we actually were warned. European outbreaks were daunting and they were telling us of what was to come. We didn’t listen. COVID-19 arrived and the Pandemic began.

Hospitals soon became overwhelmed with patients. Health care workers forced to work lacking proper PPE. Long, grueling shifts where they simply were treading water. Placing themselves at risk.

People took to the new news source, FB, and began the great debate. Statements from newly crowned experts such as “It’s only the flu”my personal favorite, filled timelines. So many opinions, so little attention to the actual experts. The actual experts who themselves were struggling to learn everything they could about this novel virus. In record time.

We saw the development of a vaccine faster than ever in the history of virology. People think the technology was developed overnight. It wasn’t. It was technology that had actually been in development for many years. But now, it was needed to be applied.

We saw the lockdown of the country and then the re-opening. We learned about social distancing and mitigation. It has and continues to be one of the most significant public health crisis of modern times.

While all of this was occurring, there was and continues to be the forgotten. The small population who are immune suppressed, immune compromised and alone.

These people live alone, have been locked down throughout this pandemic and remain so. They are isolated. There are no socially distanced parties for them. No restaurants despite the reopening. No shopping in person. No vacations or day trips. Basically, no social interaction.

Imagine your life for 20 months alone. No physical contact except for the occasional health care worker. The occasional visit from someone, outside, masked, after 14 months.

That is the life of the forgotten.

What can you do? First, if you haven’t already, get vaccinated. The sooner we can end this nightmare, the sooner everyone can return to normal. And vaccines are the path to that. They protect you and they protect the community. Next, you can think about who may know who is “forgotten.” Are they isolated? Still living in lockdown? Reach out. They need human contact. A zoom call where they can actually see your face. If you can see them safely outside with mitigation, ask them if you can visit. It needs to be more than a text or phone call. They need to see people. Though a phone call to check in, is important. But be sure to be present. Remember, they are isolated and have been for a very long time.

If you know of anyone who may have mental health issues in this situation, it is extremely important to check on them visually. They may truly be struggling and professional help may be appropriate.

Please, let’s remember the forgotten and help them get through this. Let them know they’re not forgotten.

#Forgotten

#Covid-19

#Lockdown

#Vaccinate

I named him Foxrun’s Ever Forward. Call name, Walker.

He was my new puppy to be trained and would hopefully become my third service dog. I picked his name very deliberately. Foxrun is his kennel name and is always included. But the rest was decided upon after much thought. I wanted his name to mean something. After everything I had been through. MS, disability, breast cancer, Matilda’s heart failure and NM-DCM, I felt as if I had weathered a storm and yet was determined to stay focused “Ever Forward.” He would be my living representation of that. I chose Walker well, because I’m always going to be a bit sarcastic. I wondered, how many people would get the joke? The giant mobility dog that functions as a walker, named Walker. And if you put it together “Walker Ever Forward”, it sounds like walk her ever forward. I liked that.

Little did I know when I named him, how true his name would truly be. Or how much he would live up to his name.

This boy had just begun his training when my breast reconstruction was recalled as it caused lymphoma. So, his training was interrupted when I had my reconstruction, reconstructed. He patiently did training drills bedside.

Just as we were getting back to “normal” Covid hit. For me, it hit earlier than the general population. Being immune suppressed and immune compromised, I was advised to lock down much earlier. Again, his normal training routine was interrupted. Again, he patiently worked with me where I could. As if he knew “Ever Forward” regardless.

Lockdown has been impossibly difficult for me. Isolating. Frustrating. But we continue, ever forward.

Walker somehow has found his way through this challenge. He’s become a wonderful service dog. Happy to do his job. Always reliable, resilient. But he’s also given his gift to others at a time when we all need it.

I actually teach my service dogs “Go say hi” as a way to handle the constant requests to pet them. There are times I will say no as it’s unsafe for me or truly inconvenient. But, if I can be seated or otherwise safe, I’ll give the command “Go say hi” and Walker will approach the person to be petted. Often placing his head on their chest. During Covid, the very few places we’ve gone have been health care facilities. And the people he’s interacted with are doctors, nurses and other health care workers. I watched as he brought so much joy to the nurses at the vaccine clinic when he decided he was the official greeter. Normally, I would have been far more strict but I realized just how much this brief distraction was needed. I could see it in their eyes. Covid had taken it’s toll on them too. This giant black dog was a much needed reminder of the joy in the world. Albeit brief.

And they were so impressed when I said “Back to work” and he quickly returned to my side. Ready to move on. Ever Forward.

I definitely got his name right. Or perhaps he just understands what is needed from him. Either way, it’s as should be. Ever Forward.

#Disability

#ServiceDogs

The Fall River police department actually posted this on their FB page after Chauvin was found guilty. “Chauvin immediately stood and calmly placed his hands behind his back” after the verdict, read the since-deleted post, the Herald Newsreported. Chauvin immediately stood and calmly placed his hands behind his back.” “Imagine where we’d be if George had done the same.”

That begs the question, if Chauvin had struggled, did they then think it acceptable to kneel on his neck for 8 minutes, 46 seconds, until he was dead? Did they? I’d really like to hear their answer. I’m quite serious. They can call me.

What I also find interesting is that it demonstrates the mindset that still exist within some law enforcement. Note, I said some. I’ve been pleased to see others publicly speaking out in favor of the verdict. In favor of reform. But it’s still not enough and that post proves it.

Retirement in law enforcement is at an all time high. Recruitment is reportedly difficult. The “industry” is suffering due to the scrutiny it’s been facing. But is the right response to run? To turn away?

If you’re a responsible law enforcement officer, one who is ethical, does their job without bias and by the guidelines, why not stay and help usher in a new, better time for law enforcement? Why not BE the change?

Is it hard? Of course it is. Do you think the civil rights movement and the fight for people of color to simply gain the right to vote was easy? Do you think it was easy for people of color to gain access to equal housing rights? Employment rights? What about simply the right to an education? It wasn’t easy. It was ugly. It was often met with violence perpetrated by white men in uniform. So, to ask you to stay and fix a system that may be difficult, messy, uncomfortable and sometimes ugly, isn’t asking too much. It’s asking you to simply do the right thing.

We all know that not all law enforcement is bad. Not all law enforcement is racist. Not all law enforcement is unethical. Not all law enforcement is abusive. But, a light has been shone on those that are.

So to those good, ethical law enforcement officers, I beg you to stay a be part of the change. Make law enforcement better. Be the example. Work with community leaders and legislators on reform that works for every stakeholder. But please, please, don’t take the easy way out. Change never occurs when we turn and walk away. Change occurs when we lean in. Lean in.

No, not my cancer anniversary.

Today, the amazing Matilda turns five! Quite honestly, this is a day I thought we may never have seen. So it’s with a tremendous amount of appreciation and gratitude we celebrate her birthday. However, it’s still tinged with sadness.

Matilda is my special girl. She was to be my second service dog. I spent an incredible amount of time searching for just the right breeder and puppy. I was beyond excited as I went to pick her out. She picked me. I wanted a black puppy but this fawn girl made it known that SHE was the one who wanted the job. I actually resisted but she won. Something she would continue to do. I fell in love and the decision was made. The Fawn girl in the Purple collar. She would be named Matilda. She WAS a Matilda.

I waited for her to come home. Visiting her at her breeder. Counting the days until I would be bringing her home. The toys piled up. New crates, beds, bowls, everything a new puppy could want.

Her training was scheduled. As she would be replacing Willow as my service dog, she would begin training (as all my dogs do) at eight weeks. Training a puppy while using a service dog for mobility was interesting but our trainer immediately had the solution. Clip her to Willow’s harness. It was brilliant. And at times, hysterically funny.

As she progressed through her training, it became clear she had chosen wisely. She was extremely well suited for the job. A dream to train. I often thought, I wish I could still compete in obedience. This dog is a natural. She did everything with such enthusiasm it was such fun to watch. She absolutely loved to work. She was going to be perfect.

She started working and she was perfect. She just “got it.” Even things we hadn’t trained for she could figure out. She once got trapped in a grocery store check out line. Too big to turn around, I said, “back up.” She backed up until she was out. People watching gasped at her precision. I smiled as if she’d done it a million times. She’d never done it before and we never actually trained for it. But she knew her directions and she was a thinker. She got it immediately.

So, three months after she started working when she went into heart failure, I was beyond devastated. I still remember everything about that day. Every minute. Every movement. Every painful word.

I remember the look on the face of her GP, Dr. Astrid Kruse, when she first listened to her heart and lungs. The look when she put up the chest films that were totally whited out. Her look when she said “she’s in heart failure.” Something I knew the minute I saw the x-rays. I remember her asking me that question. “Are you feeding her grain free?” I knew exactly why she was asking and I exploded into uncontrollable tears. “I’ve killed her!” She tried her best to comfort me and assuage my guilt but it was pointless.

I remember the fury with which her team then tried to locate a cardiologist on duty at an emergency animal hospital. Every person in that office was on a phone. I sat paralyzed. Crying. Guilty. Repeatedly apologizing to Matilda as she lay at my feet. There were no words I could offer to make this better for her and I knew that. I sobbed.

Thankfully, the amazing staff at Domino Veterinary Hospital had located a cardiologist that was actually on the premises of an emergency hospital. She was in Boston. We would dose Matilda with IV Lasix to start off loading the fluid and I would drive her there. Immediately.

I remember the drive. It was agonizing. I couldn’t get there fast enough. You can’t believe how fast a Ford Explorer can go when a desperate dog owner is driving to save her beloved partner’s life. The Lasix kicked in just as we neared Boston and there was no place to safely pull over. Matilda was desperate to get out. I wasn’t going to risk her getting injured or suffering an arrhythmia from jumping out and back into the car. She finally just voided in the back of the Explorer. Thankfully, I had a waterproof cover over the tempurpedic bed. But the back was soaked when she finally did exit at the hospital.

I remember when we finally arrived in Boston. I was shaking. Matilda, looked well, like Matilda. Dr. Kruse had called ahead. I had her chest films in hand. We stood in line and I grew impatient. Finally, they began to check us in. I stressed the urgency. A tech came out to triage her and dismissed us to wait in the waiting room. I absolutely lost it. I looked at her and said “this dog is in heart failure. Heart failure!” I then demanded an actual veterinarian come out to triage her immediately. A vet quickly appeared and after listening to her heart, immediately said she needed to be taken to the back right away. No shit! She took Matilda away. I was relieved that she would be monitored and treated but, the agonizing waiting began.

The new vet school graduate came to get me to officially check Matilda in and update me. She told me that she wasn’t in AFib but extremely tachycardic. Her heart rate was 255. I felt weak. She fumbled through the questions and I finally lost my patience. My beloved partner was out of my sight and care and I need to communicate critical information to the cardiologist. I finally stopped her. I wrote down a list of differential diagnoses and other critical information regarding recent relevant testing she’d had and told her to take it to the cardiologist immediately. She hesitated. I said “Now! Run!” I realized she probably thought I was a huge bitch but I didn’t care. To me, every minute mattered. I then went to the waiting room to wait. Sit, agonize and wait.

I remember sitting alone on the hard bench at the MSCPA hospital thinking she was dying and I had killed her with my poor choice of dog food. I wondered why they couldn’t at least have cushions on those benches. I remember the entire agonizing day of waiting for updates on her condition. She was critical. The only thing that kept me sane was a man I’ve never been able to thank. He understood my grief and spent the day talking to me. Distracting me when he could and comforting me when I needed it. My mind kept going back to why had I allowed myself to change foods? I’d never let a breeder influence me before. Why now? Why did I do this? I could have prevented this. I actually had just read Lisa Freeman’s article “A Broken Heart” regarding grain free diets and dilated cardiomyopathy. I just knew Dr. Kruse was right. I felt it in my bones. And I knew it was my fault.

Finally, after many hours, Dr. Morgan, her cardiologist, came out to talk to me. She was critical. She had DCM. She was in heart failure. I explained that she had an echocardiogram just 30 days prior with no sign of DCM. I was stunned. Dr. Morgan echoed Dr. Kruse’s feelings that it very well could be diet related. Which may be a good thing. She’d actually treated a few dogs that had recovered from diet related DCM. Only time would tell. But for now, she was a critical cardiac patient. Thankfully, she thought to draw a Taurine test. That would be key down the road. And she wanted to proceed as if she was a diet related DCM dog. I didn’t know it then but, these decisions saved Matilda’s life. She would remain hospitalized until she was stable. I was devastated and wondered if I was going to get through this without being hospitalized myself. I actually had just had surgery myself 10 days prior. I wasn’t even healed yet. I could now feel that pain creeping in.

They had me go and get Taurine to immediately begin supplementing her. I also had to get her food. We would begin to switch her food right away but it had to be done gradually. Ironically, after reading Dr. Freeman’s article, I had decided to switch foods. It was delivered that morning.

Once everything was done, I had to say goodnight to Matilda. All I wanted to do was curl up and sleep with her in her kennel. Unfortunately, seeing me was detrimental to her. She was so bonded, she became too excited. It was so painful to realize the best decision was to leave. I did. Driving home sobbing and wondering if she’d make it through the night.

I called the hospital every 4 hours that night. She was doing well. As well as a critical cardiac patient can do. She was off loading the fluid, her heart rate had come down and she was breathing well.

Morning came and so did the update. She had survived the night. She was stable. She was doing quite well actually. She had off loaded most of the fluid. Her heart rate was actually normal. As was her breathing. Of course, she was heavily medicated. They also had to give her some sedation as she was anxious being separated from me. She was after all, my partner. It was decided she would be better off coming home if closely monitored and restricted. Of course those things were possible.

Arrangements were made to go pick her up. After the agonizing waiting, she appeared. She didn’t look critically ill. She looked like the happy Matilda she’s always been. We had to calm her when she saw us. I had asked my friend Terri to go with me and Matilda was so excited to see her. Terri sat with Matilda while I gathered the HUGE bag of medications which would become part of our lives. I got her discharge paperwork. It contained her follow up appointments. All her follow up appointments. We were in for a long road.

We arrived home and got Matilda settled in. She was happy to be home. Too happy. She needed to be kept quiet. This would be challenging. I arranged her medications and set up the schedule for administering them. I put my stethoscope where I could easily access it. I would need to check her heart rate and respiration and keep a log for the cardiologist. I then made a phone call that brought home the reality of the situation.

I reached out to a dear friend who was a paramedic firefighter. I asked if he could help me obtain a backboard. At first he didn’t understand why. I explained about Matilda. My concern was if she suffered an arrhythmia and collapsed, at 145 lbs. there was no way to lift and safely transport her. I already had a plan to administer CPR. To his credit, and I’m grateful to this day, quickly, a backboard appeared on my front porch. It remains always ready.

As Matilda settled in, so did the reality of what we were dealing with. First, a Great Dane on high doses of Lasix. The water consumption and the urinating was incredible. It became quickly apparent that pee pads would be necessary everywhere. While it was great that she was off loading the fluid, it was not great that it was causing incontinence. It took about three months for this to stop.

Then we had to deal with her appetite. Once the girl who never missed a meal, she now wouldn’t eat anything. Nothing. I had salmon delivered, 30lbs. of ground sirloin, tuna, eggs, nothing seemed to peak her interest. I thought, I can’t lose her because she won’t eat! She was losing weight before my eyes.

I took her to Dr. Astrid Kruse who was her GP that initially diagnosed her. Astrid was equally concerned. She gave me what I now know is a miracle drug. Entyce. One dose and Matilda was eating like a champ. I then re-evaluated her medication schedule. I had just been following the schedule they gave me on her discharge orders. But it actually didn’t make sense. I was giving her all this medication at one time. I thought, God, I’ll bet that makes her feel like crap. After researching the medications I came up with a way to separate the medications. Vetmedin an hour before meals. Lasix and Enalapril with meals, Taurine 2 hours after meals and again in the afternoon. This seemed to work and she kept eating normally.

We went for her first follow up in two weeks after she was discharged. I was a nervous wreck. They wanted to see if she had kept the fluid off her chest. After waiting for the chest films, the cardiologist appeared. To my great relief, her films looked great. They also had the results back from her Taurine test. She had tested low. She had been Taurine deficient. This meant it most likely was diet related. Now the waiting began. It could take a year before we saw any improvement and she could succumb to the disease before then. I decided that wasn’t going to happen. We made an appointment for another re-check in two weeks.

On the drive home, I spoke to Matilda. I told her how sorry I was that I allowed this to happen to her. She didn’t deserve this. But I also promised her I would do everything possible to ensure she had the longest, happiest life possible.

By sheer coincidence I already had an appointment set up with cardiology at Tufts a few months after her diagnosis. I kept that appointment but updated them with her new status. They weren’t sure if the appointment would be of any value. It was only three months after her diagnosis of CHF and DCM. I said I wanted to transfer her care there given their experience with Diet Related DCM. They agreed to keep the appointment but said it would serve only as a baseline.

The day we headed to Tufts, I packed up all her records. All her prior Echocardiograms, labs and films just in case they hadn’t received the records by email. We arrived and checked in. I sat and looked around reflecting painfully on what led to this. If only…..If only I had brought her home and just fed her Purina. It was that simple. If only…

They came and got us. Went through a thorough history including diet. I met with the amazing Dr. Suzanne Cunningham. She’s lovely, by the way. She was very pleased with Matilda’s treatment thus far. She explained that it even if this was diet related DCM, it usually takes a minimum of six months to see any changes. Today would be a baseline exam. They then took Matilda off for her Echocardiogram and I went to wait.

After what seemed like an eternity, the resident came to retrieve me. They were done. Matilda was waiting in the exam room, happy as could be. Dr. Cunningham soon entered. I braced myself for what I anticipated would be unpleasant news. Instead, she said that much to her surprise Matilda had already improved. Quite a bit. She cautioned that she still had DCM but this was definitely encouraging. She also loved Matilda. Who doesn’t? She wanted to keep everything the same and see her again in three months. I felt like I could actually take a breath. I cried. This time. Happy tears.

At her six month check up, she had continued to improve. We reduced her Lasix. We would check her again in three months.

Eventually, we went to a schedule of cardiologist check ups every six months. Throughout her recovery it’s been a journey of ups and downs. She had one visit where she had backslid a tad. But, we had reduced her Taurine. Though completely observational, I decided to go back to her original Taurine dose and her next check up showed improved again. She’s now seemed to plateau in her recovery. In July, it will be three years since that awful day. But, the girl who was in heart failure with a grade III heart murmur and a gallop. Is still alive. At her December 2020 cardiologist exam she had no heart murmur, no gallop, no arrhythmia and all her measurements have greatly improved. Will she ever be “normal?” No. But Matilda never was normal. She has always been exceptional. And she continues to be.

If Matilda and I can teach you anything with her story it’s to please be aware of what you’re feeding your dog. This didn’t have to happen. It was the result of the perfect storm. Her mother was fed a BEG diet while pregnant. The puppies were weaned onto a BEG diet. I foolishly switched what I was feeding and continued to feed her that BEG diet. Specifically, Taste of the Wild. Number three on the FDA list of foods implicated in this disease. So please, only feed your dog a food that meets WSAVA guidelines. Those are Purina, Royal Canin, Science Diet/Hills, Eukanuba and Iams.

More information can be found here:

https://www.facebook.com/groups/TaurineDCM/?ref=share

Click to access Selecting-the-Best-Food-for-your-Pet.pdf

https://ccah.vetmed.ucdavis.edu/areas-study/genetics/nutritionally-mediated-dcm

Petfoodology

#DietRelatedDCM

#NMDCM

#DCM

In loving memory of Mozart. Gone too soon but never forgotten.💔

I used to begin each day reviewing the statistics of the pandemic. I would then open the medical journals and peruse the latest published articles. What treatment was showing promise? What are we learning about the virus and it’s RNA? What have we learned about how this virus spreads? So many questions.

I then began to realize what wasn’t being addressed. The toll on people like myself. It really hit me today when I read another disabled person’s FB post. She was desperate. She noted the toll this had taken on her mentally. The stress of isolation. Complete isolation. Her desperation seemed to leap off the page toward me. As if it was shaking me by the shoulders. I knew that desperation. I felt it. I feel it every day.

While everyone is complaining about missing Thanksgiving or Christmas with their families. Or not being able to ramble an overly crowded mall to shop. There is an entire population of people like myself who are extremely isolated. We are chronically ill. Immunocompromised. Disabled. We live ALONE. We have been enduring this lockdown as a true lockdown for us. Our only face to face contact is usually with a health care provider. For nine months!

We can’t risk that fun social distanced fire pit you’ve had with your friends. We can’t risk having a few friends over for a social distanced get together. We can’t risk any exposure because we know that if we get the virus, we most likely will not survive.

So we live alone, isolated and fearful. We are also angry. At least I know I am. I am extremely angry that this pandemic wasn’t handled better when it began. I, purchased masks in January 2020. If I knew it was coming in January, how is it that our government did not? How is it that the response in February or March was still so lacking?

I’m also angry at the people who refused to take this seriously and continue to do so. It is those people who have exacerbated this pandemic. Who continue to drive up the numbers instead of allowing us to flatten the curve. By not strictly following mitigation guidelines, these people have contributed directly to the spread of the virus. They are directly responsible for the fact that people like myself remain isolated.

So please, before you begin to complain again about the holiday dinner you may have to miss or the shopping experience from hell you can’t enjoy this year, stop. Stop and take a minute to think of the many people who are and have been enduring this very differently than you. The people who are truly isolated and alone. Think about the toll this has had on them. It is tremendous.

And please, think of those families who have already lost loved ones to this virus. I’m sure they’d gladly give up a holiday meal for the life of their loved one.

Wear a mask, practice mitigation, wash your hands, stop bitching and get vaccinated when you can. This needs to end.

😷😷😷😷😷

#Disability

#MS

#Immunecompromised

I actually wept this morning. It takes a lot these days to bring me to tears but this morning, a conversation I had with a young woman did just that.

She was a young woman of color. A soft hint of a southern accent lingered in her speech. We spoke about the state of the country. The horrific events we were witnessing. She openly expressed her fears. How she couldn’t believe she was actually living “like this.” I cried. I cried because at just that moment I happened to look at a picture of my mother. My mother who during the sixties in Detroit, was very involved in the civil rights movement. My mother who cried when Dr. King was assassinated. Who cried when Detroit burned during the riots that followed. My mother that taught me that hate was never to be tolerated. My mother that taught me that all people are to be valued. And my mother that taught me it is your responsibility to speak up in the face of injustice and intolerance.

When my mother passed away in 1974, I’m sure she sincerely believed things were getting better. That as a society, we were evolving. I know I certainly did. And I clung to that belief throughout most of my adult life.

So this morning as I spoke to this young woman who expressed her concerns about her future, I literally wept. I realized that my generation as stewards for this country have failed. Personally, I feel I’ve failed my mother. Universally, we have failed the generations that are coming behind us.

Instead of presenting them a country that embraces them, we have enabled hate to prevail. We have presented them with a country where a young woman actually says “I don’t feel safe anymore.” And that is something we all should weep for.

#BeBetter

#DoBetter

I still remember the day I first heard the words MS. It was long ago. And I was in no way ready to hear them. So I actually refused to hear them. Pretty simple solution right? Ah, the river of denial.

Funny thing about MS, while you may refuse to acknowledge it, it refuses to give up as well. It quietly works it’s way throughout your central nervous system. Destroying myelin as it goes. Leaving it’s mark in the form of plaques visible on MRI. Eventually, the plaques are of little diagnostic value as you progress. They simply measure how quickly you’re progressing. Though I recently heard a radiologist speak on the subject who felt that they actually may not offer the same value once you’ve progressed to a certain point.

Regardless, this destruction of the myelin is your undoing. It’s the protective sheath that surrounds your nerve cells. The technical explanation is Myelin is a lipid-rich substance that surrounds nerve cell axons to insulate them and increase the rate at which electrical impulses are passed along the axon. Make sense? You see, your nervous system is basically like an electrical system. A break in the wires and things start shorting out. Mayhem ensues. And unlike an electrical system, you can’t just apply electrical tape to repair those wires. Myelin (to date) does not repair.

There are a number of forms of MS. Most common is Relapsing/Remitting. The patient will suffer a relapse of symptoms followed by a period wherein the symptoms will “remit.” Either totally or partially. Some patients experience great periods of time between relapses. But when they relapse, it can be crushing. Some patients never progress beyond this. And thanks to the progress made in research and treatment, this is becoming more common. As is greater time between relapse.

Primary Progressive patients present with no relapses. They are simply progressing at the time of diagnosis.

Some patients (like myself) start as relapsing remitting and go on to become secondary progressive. Meaning, we started as Relapsing/Remitting and somewhere along the line, we stop remitting. We keep progressing.

For me, it was a couple of MRI’s with quickly advancing plaques. Two of which decided to plant themselves brazenly on my brainstem. Admittedly, this is where knowing too much is not helpful. I read that MRI and I melted. I knew the potential implications of that. Your brainstem is a bit critical to bodily functions like breathing, swallowing, blood pressure regulation. All things I already had problems with. I was pissed. I couldn’t believe with all the other geography of my brain and spine, it decided to set up camp on my brain stem. And I was frightened.

Thankfully, I have a fantastic neurologist. She also knows how to handle me. She knew I wouldn’t want to hear the word “progressive.” I’d already fought her (and lost) about using a cane. Getting a service dog. Starting medication. Being evaluated for and treating my seizures. I swore I was just passing out. Lol! She’d won every battle with me by understanding me and finding her way into my psyche. Not an easy job. This was no different. She proposed a trial they were starting for progressive patients. To enroll, she’d have to label me progressive. It was just a label for the trial. Was that okay? Intellectually I knew I met the criteria for progressive. But emotionally, I liked the idea of just calling it a label. I agreed as I would do anything to slow the progression of those little bastard plaques on my brainstem.

It’s now been a number of years since I was labeled progressive. I am progressive. I can now own it. Just as I own my MS. I look back to when I initially crashed and burned as I say, and I laugh at the denial. I kept saying I would be back to work in six months. Of course, we knew this wasn’t true. Working in surgery, they REALLY don’t care for you falling in the OR. You knock over a few Mayo stands and people start to get annoyed. Really annoyed. Intellectually I knew the truth. But emotionally, it took me a long time to accept it.

So I live my new life with MS. Because that’s what it is. Your life doesn’t end. You just have to learn how to do things differently. And sometimes it really is hysterical. And sometimes it really is awful. Just like every life.

I had my worst night of pain last night ever. There is no way to explain MS pain. It’s a combination of spasms and undefined pain you simply can’t control. I remember many years ago watching Montel Williams speak about wanting to take his own life due to MS pain. Ignorantly I thought, “how could it be that bad?” It really is that bad. Not that I would ever be suicidal. I love life far too much, but I remember when I finally got it. It grips you and just won’t let go. As if it’s saying “Don’t forget I’m here and I can do want I want to your body. You’ll never win.”

Well, every day I wake up I do win. I’ve beat cancer multiple times I have other significant health issues and yet, I wake up every morning. So yes, fuck you MS. I may have to live with you but that’s just it. I’m living.

#FuckMS