This story is complicated and has been going on for a year so I will warn you it’s pretty long. I suppose I’ll just start from the beginning and if you are interested in the details —here’s the last year of my life..♥
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Fevers Starting
In May 2022, I started to have sudden high fevers -which as a person with an immunodeficiency- fevers were not normal, ever. I was having multiple high fevers of 101- 102 F three to four times every single week. At first, I just let them go. As I’m writing this my temperature hasn’t gone below 100.3F in the past week and still no one understands why. But when they first began I just lived with them and didn’t think anything of it. I just knew I was suddenly incredibly hot all the time and it was bothering Kyle and the pups sometimes even more than it did me so I lived with it for months as a new symptom. The reason why is pretty simple. The pandemic has made my healthcare harder by changing everything about our healthcare system. Although many feel the pandemic has ended both patients and doctors are still overwhelmed and trying to recover from lost time, staff and resources.
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Tripping and Falling
In the months leading up to May, I had also become more accident prone and clumsy. We hadn’t really noticed at this point what was happening but I had already suffered several in-home injuries. I got a concussion, fractured nose, and for a moment my doctors worried I had a spinal fluid leak after I accidently collided heads with Addie while CUDDLING. I randomly fell over a baby gate when my leg failed to cooperate and ended up falling with the gate into a doorframe. The gate fall resulted in so much bruising my doctors even worried I may have had bruised something internally. I once lost my balance getting off the couch and sprained my ankle, knee and had to get X-rays to rule outfoot fractures. I suffered many injuries to my foot, wrist, knees, and lower-back in ways I honestly can’t remember, but I can remember wearing a boot, wrist, knee and lower back braces for several weeks after. When you live with several chronic illnesses… it’s hard to know when things are a new problem or just a symptom of a flare. One especially bad example is when I went to take Stanley outside to potty. I connected his leash around my waist to take him outside. I told him it was okay to go outside but my reaction time was too slow as I hadn’t opened the sliding glass door fully yet. On my command Stanley went through the partially opened door but I did not have it opened enough for me to fit. I hit the door frame with my arm, shoulders, and body. I got horribly bruised, a dislocated shoulder, whiplash, and I even had a ridiculous bruise around my waist from his leash. There are many more examples, but these are just a few of the ridiculous ways I managed to injure myself the past year. I wish I could say that last incident made us realize something was wrong but it didn’t. I’ve always been a clumsy person so it was hard to see these went so far beyond that. I was telling my doctors about my injuries. They were concerned by the frequency but I was getting them checked out and treating them so there was not much else to do. Finally we did start to notice the delay of my reflexes and the obvious effect it was having on my normal daily life. But it truly wasn’t until I started to randomly lose my balance that the real concern started. When I was walking, I started to bump or run into walls and didn’t seem to be able to walk straight without an uneven gait. When I got up at night, I would frequently lose my balance and ended up on the floor with no idea how I got there. Then I unfortunately started fainting and blacking out again. I once again started to rely on my walker for safety at home and my wheelchair for all non-virtual appointments/medical testing.
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My babies both helping to take care of me before, during and after my new “seizures”.♥
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New Seizures Starting
In September, I started to have what we thought was a new type of seizure. When the “seizure activity” started we were confused because we didn’t understand it. It didn’t seem like a normal seizure for me or to Kyle who has been by my side during my seizures in years past. During my “normal seizures” I am not aware of the passage of time nor am I fully aware of what is going on and have to trust Kyle or others around who will help me through them. My new episodes are terrifyingly different as they allow me to be fully aware, but unable to communicate as they happen. Although we had no idea what this was, I began to refer to this new feeling as being “Locked in my own brain.” I start to lose feeling, control, and the ability to move the arm and leg on one side of my body. I can tell when it’s starting because those limbs start to feel like the heaviest thing I’ve ever lifted in my life until I can’t move them. Because of the pain from the starting tremors, I am unable to think clearly, although I still know everything that’s going on and I can hear Kyle asking me questions. Then my worst fear begins and I can’t talk. I know what I want to say to Kyle in my brain. I know the words. My brain is screaming the words I want my mouth to pronounce-… but it doesn’t. As my body begins to have full body spasms starting in my back and my legs, including the arm and leg that I am unable to move, it all becomes incredibly painful and I am completely unable to make my mouth say the words that I need to say. I’m unable to communicate. I’ve become locked inside of my own brain. I’ve become unable to communicate and tell the one person that I trust the most in the entire world how to help. These episodes can last for hours. During these episodes we both feel helpless. Eventually I get mad, frustrated, scared, and usually end up crying because I have absolutely no control and there is nothing that I can do to get through it except wait. Wait for the moment that my body gives me back control.
We unfortunately noticed these episodes were often triggered by pain to the point of severity and my medications make no difference. I deal with chronic pain on a daily basis due to my multitude of illnesses/diseases and I can’t truly recall the last pain-free day I’ve had. I often don’t have control over my “daily pain level” or the ability to prevent it from escalating to trigger another spasm “episode”. As someone who has lived with chronic illnesses that have often controlled my life for so many years, I thought that that was something I was used to and prepared to deal with. I thought that not having control was something I understood and had become comfortable with… in a way. But this new illness is different.
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Just a Few of my Art Projects Throughout the Years..
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Hand Tremors
In addition to these new seizure episodes, the hand tremors decided to continue as a persistent part of my daily life on their own. In the months leading up to the new seizures, I began having increased pain in my joints- especially in my hands. Since then, the pain and tremors in my hands have become constant. Having dexterity and strength in my hands has always been an essential part of my life. I’m an artist. In the last decade of constant illness, art has continued to be my therapy. I’m even seeing a therapist now who specializes in Art Therapy. Art is my escape from pain. There are many mornings Kyle has woken up to find me in the living room doing some new art project as a way to handle the painsomnia. When I’m stressed by all the crazy things happening to me and around me that I have no control of, art has always been my safe place. Picking up a brush. Crafting an intricate pop-up card from paper. Learning how to make flowers from coffee filters. Art calms my brain and distracts me from my limitations. The more intricate, the smaller, the better. Because that means it requires more concentration so it’s a perfect distraction from the pain or stress. The intricacies make my perfectionist brain so happy and content. But my hands currently don’t work. Art is supposed to distract me from my pain but now creating art also creates pain. My hand tremors have stolen the joy that art has always held in my life but not just art. My hand tremors cause me to struggle to grip anything without pain. My tremors make my handwriting completely illegible.
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My little backyard garden oasis.♥
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Gardening Troubles
For the last three summers I’ve been stuck in our home in Virginia because even as the pandemic ended for most everyone, it’s still not completely safe for me to be exposed to the public. I am unable to be fully vaccinated for COVID for several reasons – anaphylaxis to the vaccine itself and my immune system’s lack of response to the vaccine when I was tested with it being only two of those reasons. So that first summer we decided to make our backyard into my little oasis. I finally got to get back to gardening again. Growing my own vegetables and fruit like I did so much of my childhood with my Pappy and Gram in their gardens. I may not be able to physically go visit them but FaceTime has allowed me to share each step of this with my Pappy. Each year our garden has grown. I designed an indoor greenhouse and Kyle built it for me. I love the process of starting my little seedlings inside then planting them when they are ready. I love digging in the dirt. I have since I was a child. It calms me. There is something so therapeutic about planting and watching things grow. When it’s finally time to go pick my favorite yellow pear tomatoes straight from the vine and pop them in my mouth… my heart is filled with so many memories of my childhood with my grandparents. So we have worked to make our backyard mine. But this year I can’t start my own seedlings because the tremors ruined that. I can’t dig the holes because holding my shovel is too painful. And I’m not allowed to be outside alone working in my garden due to my current mobility issues and clumsy falling.
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Addie and Stanley aka Stanny: the Lights of my Life.♥
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Caring for our Pups
I could probably handle all of these things fine but everyone who knows me knows that my rescue babies, Addie and Stanley, are my world. For the past 10 years Addie has been my partner, my shadow and as my surprise service dog she has ended up saving me from my own body. When I first saw Stanny’s photo I knew he belonged with us and it turned out, I was right. There are so many days when my body makes everything hard. Most of my life for years has been spent at home, not around other humans but these sweet souls make sure I’m never alone or lonely. My rescue babies have each found their own ways to rescue me every day by simply being themselves. They comfort me, make me laugh, have taught me so much, they don’t leave my side, and I know they would take away all my pain if they could. They are the lights of life. They manage to make every day that I’m in pain somehow better. They give me a purpose on the hard days because I LOVE taking care of them and they NEED me too. Both of our fur babies had pretty traumatic lives before we found them and my greatest goal will always be to give them the life that they have always deserved. My current health issues have made doing that increasingly harder for me each day. During the last year Stanny was diagnosed with Megaesophagus. I have shared much of his story on here and on my other social media platforms but Megaesophagus is not an easy condition to handle. His diagnosis certainly has made our lives more complicated at times but if any family is qualified to handle a medically complex pup, it’s us. We feel our lives and all the medical knowledge we have had to learn for me has prepared us to be Stanley’s family, like all the things I’ve gone through have a purpose if they help him live a full life.
Stanley’s medical issues do require a strict schedule for both his food and medication but I am always at home to help him. Stanley’s megaesophagus requires him to eat in a special way and his food has to be a certain slurry texture so he can swallow it. He cannot drink any water because of the risk of aspiration so all his hydration is worked into his food. Mixing the food and water together to the right consistency now causes me pain in my hands, a task that a year ago was so simple and easy for me. I often have to take breaks because the pain gets too intense. I know to others our dog’s feeding process looks complex and shocking but I worked to create the perfect menu so they both get what they need to be healthy. And it has worked. I really don’t need to do anything crazy or difficult, I just want to mix a bowl of dog food. I want to feed my dogs in a way they can be healthy. I want to feed them their diet that I spent weeks creating with their vet to make sure I get to have them healthy and living longer. But my body won’t even let me do that. And the longer I’m forced to stand there waiting for my hands to tolerate holding a spatula… the more likely I am to faint or lose my balance and get injured in some other way. Even more annoying — I can completely forget what I’m doing despite all the objects being right in front of me. My cognitive issues have become worse as time has gone on. Some days will be okay but others will be difficult. As someone who has struggled with brain fog as a symptom of my other conditions for years, this type of cognitive dysfunction is more than frustrating. It makes me feel like a child. I’m not allowed to use the stovetop alone in case I forget to turn it off.
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No idea what I’d do without all their cuddles, silliness and love daily. Loving them is easy. ♥
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Home Alone
Kyle has been working from home a lot so he can help me. He takes on these tasks that I struggle with. I also think it’s simply because he’s worried. But his job does require him to take trips both locally and out of the area. His teams needs him, so during those trips I am often home alone with the pups. I am handling the management of Stan’s meds starting at 7:30am to the last at 11:30pm with the four meals in there along with managing my own medications and health issues. I love doing these things but I also know they make everyone else worry about me. I love my independence. I have always loved being fiercely independent. I struggled for a long time when I first became chronically ill and disabled to allow others to help me but I eventually did. I allow others to help me when I need it, but I also know when I am capable of doing things on my own. I worked hard with Addie after she began alerting me to gain back more of my independence and for the last 7-8 years she has given me so much. We have been able to work together to keep me safe and allow me to rely on her and myself instead of constantly needing others. But this illness is different. Addie hasn’t been able to catch all the changes in my body and she has even missed a fainting episode which hasn’t happened in years. With every other change and new illness, Addie caught them first. She picked up my anaphylaxis before anyone else so I could always medicate in time and she never left my side. She’s beyond remarkable. She’s done things that some service dogs who are bred for this and trained since birth are unable to do. She’s my little guardian angel and I can tell she even feels helpless right now like the rest of us. We have talked about having a helper come assist me when Kyle is away but our insurance does not cover that for me since I am not eligible for disability, so it would be a huge expense for us. We have also simply looked into dog sitters- we had a great one last year but he’s no longer available. I have struggled to find a dog sitter who is comfortable handling Stan’s medical complexities so for now, it’s just me and my pups.
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Trouble Finding Answers and New Doctors
We have not been idle as these new symptoms and hardships mount. I have seen so many doctors in the last six months. So many specialists that have passed me off to another one. In December 2022, my PCP who we love and respect so much reached their limit and had to tell us that my case is too complex and their office would not be able to continue my care on a day-to-day basis. She didn’t feel she could give me the care she thinks I deserve. I don’t blame them. The pandemic has been extremely hard on the entire medical community and they are still overwhelmed from its effects. They’re just trying to keep their heads above water and I respect her for being honest with me. She has helped so much for the past eight years but this has left me in a situation where I no longer have a PCP to coordinate my care. It has also been hard for me, personally, to lose a doctor who I have trusted with my care for so long and who I spent years building that relationship and that trust with.
Luckily in the last few months my other longest-standing doctor, my immunologist and his office, have stepped in and done everything they can to help me. When I say I believe this man saved my life years ago- I mean it. He was the one who found my immunodeficiency, corn allergy, numerous other allergies, Eosinophilic Esophagitis, Mast Cell Activation Syndrome and even accidentally discovered my clotting/platelet disorder which led to my Vascular Ehlers Danlos Syndrome diagnosis. When he started treating me almost 9 years ago, I was at my lowest weight of less than 90lbs with zero answers. He’s one of the biggest reasons I’m still alive so I trust him with my life. In early January I had an extremely adverse reaction to prednisone (which I have taken so many times in life without issues). I ended up completely unable to move on my own for two weeks. After hearing this symptom, he decided to add more neurologists to my team and combined they believe I have an undiagnosed Neuromuscular Disorder.
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New Medical Care and Testing
Now I will admit I didn’t think I was adding that to my list of illnesses. It’s not a place medically we’ve had to go yet and we don’t have many more places to go at this point. But I trust him so we have started doing testing and we will continue doing more testing. I have three neurologists now from the same practice who are all in different specialties and they all agree that my case is extremely complex. I am very sick of hearing that word – COMPLEX- to be honest. It’s a frustrating label to walk around with because it affects so much of my care and who is willing to help me. My entire team of doctors agrees that I am in need of a doctor to be my advocate, a doctor who can manage all of the “complex” things we have going on, a doctor who can also manage all the other specialists. Normally this would be the role of a PCP but I don’t have one right now and so far we repeatedly have been turned away when we attempted to replace mine on our own. My team agreed at this point that I need a Specialty Care Concierge Doctor affiliated with the hospital system we are working within. This doctor will help find the best specialists as fast as possible, help make sure I get the best care and make sure I’m taken seriously. We get to interview these doctors to make sure we find the best fit and so we find the one that will just treat me like a human instead of a “complex” case. The practice that has been recommended already has experience working closely with my immunologist and is willing to continue doing so on my case which already makes me feel better. At this point in time, this is not only our best option but it seems to be our only option for getting me the care I require. But it is concierge and it does cost money so we have to pay for the year and that’s not really easy on top of all the new medical expenses we have taken on lately. We have had to do increased testing, expenses for new medical aids/ equipment to help make life more accessible for me, fees for specialists and my normal every day medical expenses we already pay living with chronic illnesses — which is why my best friend’s family/my second family, the Martin’s decided they wanted to help us by setting up the GoFundMe that probably led you here.
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Being Honest About My Health
I realize it’s been awhile since I’ve been this honest about my health. It may even be the first time I’ve been THIS honest about my reality ever. Most people are probably wondering by this point how I’m doing mentally/emotionally as well after reading all of that and to be honest, a lot better than you would expect. I have an amazing therapist who is helping me to find ways to handle my loss of control. It’s still hard but I also have support from Kyle and my village of people who get me. I am not lying when I say that Addie and Stanley as my constant companions make my life so much better and that I wouldn’t be able to do this without them. It isn’t easy by any means and I have bad days like everyone else. I miss art. I miss gardening. I miss my freedom and independence. But this isn’t the first time an illness or disease has showed up and tried to completely take over my life. When you learn you have incurable diseases that lack many treatment options- you are forced to think about life differently. It may seem dumb and I know it has at times affected my medical care and how some doctors view me but I cannot change my personality. I also refuse to allow my diseases to steal that away too. So yes, despite the insane amount of things I have going on with my body- you will probably still see me smiling, laughing and being my peppy self because that is who I am. I enjoy the simple things and always have; it’s definitely something I got from all three of my grandparents who practically raised me. I know no matter what new diagnosis gets added to my list – we will handle it because we have to. But I do want the freedom back to enjoy those simple things again with my babies and Kyle. I want to be able to again visit and spoil my niece and nephews and my grandparents without the constant worry of what my body could do. And I especially want to take that constant worry away from Kyle. I want answers so I can have less pain and more control of my own life again. I want to get back to thriving more than I am surviving and not just for my own sake.
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Thank You So Much
So if you read this far, thank you and if you are able to donate or even share the GoFundMe my second family created.. I appreciate you more than my words can ever express.♥
If you didn’t come here from the GoFundMe and are interested in donating or simply sharing it for us- You can find it here:
Simply Macy 