Doug Ebert

so last update was on my birthday last Monday the 26th. I've been having just some fatigue and trouble swallowing that day. when I woke up on Tuesday morning I couldn't even swallow water without choking and started having some breathing problems. so started getting my stuff together and got ready to call the car to take me down to the ER. by the time I got my stuff and started heading out the door my breathing problems got really bad. so I had to call 911. when the fire department showed up I also found out that I couldn't talk. which made it really difficult to communicate what was happening to me. I tried to type out on my phone to them but when I'm having a flare like that and also affects the ability for my hands to really work. luckily I was able to communicate to them what was going wrong and they got me down to the ER and I was able to get some treatment. when I got into the ER the doctor said that they might have to intubate me which was the closest I've ever come to having that happen. that was really scary, that's not something I ever want to have to do. they got me on a BiPAP though am I breathing got under control. I stayed in the ER for the rest of the day on Tuesday and they got me to a bed in the ICU around 2:30 in the morning on Wednesday. at about 4:00 in the morning on Wednesday I was finally able to test out drinking a little water and I was able to without choking. it's meant that was finally able to start taking some of my meds and that eventually started to help balance me out. I was in the ICU for all of that day. I was doing better I'm going to transmit for me out of the ICU on Wednesday night and then I had another brief flare up and to breathing issues so I stayed in the ICU until Thursday morning. then they finally got me transferred. and I spent the next day just recovering and getting back on my meds you know getting more comfortable trying to drink and eat a little bit again. it got really traumatic, I can even still feel it today at any time I take a sip of water or a bite of food I worry about choking. because your throat just gets to a point where there's no reflex so if something gets back there it doesn't come out. there was one point last Monday night where I had been just having some soup and there was a little bit of piece of meat in it and that got stuck in my throat and got lodged in there and I had to essentially give myself the Heimlich maneuver to get myself to cough it up. I know the other thing I never want to have to do again. I was finally discharged on Friday afternoon came home. not being resting since then. knock on wood I haven't had any issues with swallowing. so making sure I drink plenty of water and not eating anything too complicated. but today is Sunday I'm still feeling okay getting lots of rest is what my body needs. thank you again to everybody that comes to your visit what's been going on with me. also just a note, all of this is done talk to text because my hands are too great typing and with my eyes just makes it for a real struggle. so if there's any errors sorry.

today is my birthday. I am 53 years old. it has been just over 6 months since I first started showing symptoms of myesthenia gravis. and as I've learned like every day your body tells you what you're going to be capable of today. today is one of those days where eating and drinking are a struggle. just getting my medication down it's quite an adventure. there are things that I wish that I could be doing today that I can't. some of those things I'll do another day. others I don't know if I'll ever be able to do again. but I'm still here. I'm appreciative of the people that have reached out. I'm appreciative with the people that have taken the time to come to this page and you read about my journey. I'm still here and I appreciate the chance to be here. thank you

I have really been overwhelmed by seeing all the people coming in checking out my page, reading my story. thank you to all of you who have taken the time to check in and to say hello or to just read the story, or to give a little something. it helps more than you know. and I'm truly thankful. I will continue to update here how I'm doing. but you can always reach out to me on social if you'd like to know more. thank you all

Last week was a busy week for me. I moved from where I'd been living to a new space. It's really nice it's a positive place for me. Then right after the move started having some acute respiratory issues. With myasthenia gravis you really have to watch out for that, that's what the doctors told me when I was hospitalized the last couple times. I took myself into the ER as Swedish on Saturday to get checked out and they said my oxygen levels were good but they noticed that I was laboring a bit. It was really tied to the fact that I have sleep apnea and I've been using a CPAP for a long time. Right after I moved the CPAP stop working. If you know anything about sleep apnea you know that's not a good thing. So they wanted me to monitor it and come back in if I was having any issues. All day Sunday my breathing seem to be getting worse and worse. It felt like my diaphragm was just spasming making it harder and harder to take a full breath. I got myself set up with a rideshare to go back into the ER. But as soon as I got in the car stop being able to breathe. The driver was so helpful, they help me call 911, fire department showed up, and then I was taken by ambulance down to Valley Medical center. The only way I can describe the sensation was it felt like my lungs had turned to the size of two ketchup packets and that was as much as they would inflate and it was taking all of my concentration to just breathe that little bit in and out. That went on for about 2 and 1/2 hours. It got pretty scary, it's not something I would wish on anyone, felt like I was on the edge of passing out for most of it.And then once I got into the ER they were able to put me on a BiPAP get my breathing regulated and my O2 up. How is hospitalized for about a week slowly leaning off the BiPAP and getting my lung capacity back up to where it needed to be. They're also very helpful at getting me a new CPAP which has been great. My sleep is much better, my breathing is much better, I'm able to focus on the rest of my recovery. Getting set up for the new IV treatment which I should be starting next week that I'm very hopeful will allow me to continue to do more and more. I'm home now and focused on recovery. Prioritizing my health while at the same time wanting to share as much as I can about this experience so that people can understand what it's like. I've had the chance to connect with several people who have chronic illnesses, who deal with autoimmune issues. Scary trying to do it on your own, but I find more and more that I am not alone. There are people in my life who have really shown up to support me in every way. It's always been hard for me to ask for help. And these people have shown me that it's a strength not a weakness. If anyone wants to know more about any of this I will continue to put updates here. Also feel free to reach out to me on social media, or if you have my number shoot me a message. Thank you for taking the time to be here, to read this, and to show your support. PS my hands don't work very good for typing these days so this is all done talk to text. Apologies for any grammatical or spelling issues. Thanks

In April of this year I was sitting at my desk and noticed that my left eye had just closed on its own. To a strange I looked at myself in the mirror and I was able to open it back up slowly and start working on the computer again. But then a few minutes later it did the same thing again. Over the next few days this happened more and more. I put it to the side though, because I was starting a new job in a week, I had been unemployed for a while, and I told myself that I would get it taken care of once I got going with my job. My eyes didn't get any better and eventually affected both of them to the point where it looked like I was just kind of squinting all the time. Then eventually my right eye just didn't want to open anymore on its own. And I started having almost constant double vision you can imagine what this is like considering how I got to work and back was riding the light rail and a bus and walking several blocks. This became increasingly difficult. I then begin to notice during the summer that my legs and arms just felt tired and weak all the time. My Walk going to work and coming home got more and more difficult. Going up and down stairs got more and more difficult. And it started to affect my balance. Then I started noticing problems with chewing when I was eating. Like my tongue didn't want to work things that you kind of take for granted became difficult and I had to focus on. Chewing and swallowing became something I had to focus on more and more. The thing that finally really scared me was in my job I talked on the phone and towards the end of my day my speech was slurring. I made an appointment to go to a local clinic because at this point I did not have health insurance through my new job. So on my day off I took myself down there started checking in with the nurse and they took one look at me and said I needed to go to the ER. Walking can become difficult my balance was very off combination of fatigue in my limbs and my vision at a difficult to walk and navigate around. On a good day I had about 25% to 30% vision in my left eye. I took myself to the emergency room at Swedish Medical center and they started to examine me. Right off the bat it seems that the doctor had a familiarity with my symptoms. Things that seem so random and disconnected we're actually related. They brought in a neurologist and that was the first time I heard the autoimmune disease myasthenia gravis. It was a lot to take in, different doctors coming and asking me questions, it was a lot to take in. One of the doctor's mentioned as I was being taken off for a chest x-ray that I probably didn't have a tumor but they needed to check anyway. This was not something that I wanted to hear and added more confusion to for me. I did not have a tumor which is actually one way that my senior gravis can present itself. I had the other kind, the one that can't be fixed by removing a tumor. I spent the next 5 days in the hospital getting infusions of antibodies to try and stem the tide of what was hammering my body. I started feeling some of the symptoms were lessening. After I was released from the hospital there was issues trying to get my medication, the one that was meant to help the most with my symptoms cost merely $2,000 for a 30-day supply. Without insurance that was not going to be possible. So my symptoms returned with the pensions, flaring up, getting worse. By the end of the week I was back in the hospital for another 5 days. That time I received some incredible assistance from the people there at the hospital to help me make sure that I had my medication going forward and it would help set me up for success. I was already to return to work after I was discharged from the hospital again after another 5 days. That morning while waiting for the light rail to get to my bus to head down to the South end I stood up and went to walk to the train and pass out on the platform. I was taken to the ER and they were not able to find reason for by that it happened. A series of scary moments that was one of the most scary. I had to make the decision at that time to put my health first knowing that I would have to leave the job that I had because just the toll of getting there, working, and then getting back home. Was going to be too much for me at this time. My body wasn't capable. that's the thing about myasthenia gravis, you can't just push through, if you do that it just makes it worse and set you up before another flare or is that coming to find out another trip to the hospital. I wanted to share my journey with this and what led me to create this page. I'm actively working for benefits, and assistance to be able to live my day today. If any of you have gone through this before you know it all takes time. I appreciate you just taking the time to read this. If you take the time and the thought to send something just know that I will be forever grateful for the opportunity that you are hoping to give me to live a quality life. While working to find my way through this. I have a treatment that is starting soon that luckily is being completely paid for by the hospital. I will send updates as this goes on. And I'm very optimistic death as well help my quality of life greatly.

I was diagnosed with myasthenia gravis, an autoimmune disease, and it has changed every part of my life. I had to leave my job, and without work I also have no health insurance. In the middle of trying to manage this condition, I am also trying to avoid becoming homeless. My quality of life has diminished in ways that affect me every day. My condition impacts my mobility, my vision, my ability to talk, and even my ability to eat. I have also been hospitalized twice in the last month, which shows how serious and ongoing this has become. The funds raised here will help me pay for prescriptions, treatment, and transportation to medical appointments. These are continuing needs, and having dependable support would help me keep up with the care I need while I am unable to work. If you are able to give recurring support, it would make a real difference in helping me manage these ongoing medical expenses. One-time donations are also deeply appreciated and would help right away. If you can help by donating or sharing this fundraiser, I would be truly grateful. Your support would help me keep getting treatment and give me a little more stability while I face this difficult time.