It has been so long since we made an update. So much has happened, and you will have to forgive me for how long this will be. This summer was a very challenging time in our lives. We didn’t expect anything that we have had to face. We did not expect to end up where we ended up. We did want to let you know what has been happening since our last update. You’ll have to excuse my bullet point form again.. It’s just so much easier for me to keep my thoughts together.
- End of March I started having a lot of issues with my heart and chest. Disorganized heartbeat, chest pain, pressure, burning, etc it started in March, but over the course of the spring and summer it progressively got worse.
- April 2 – we were doing a Facebook live, and it had taken a lot for us to decide to do one. I have been feeling off and was really unsure if I could make it through one. We started, and I thought I was going to be okay. I started having issues with my vision and knew that I was headed in a not good direction. The broadcast ended abruptly when I started having a seizure.
- As April progressed I started having more issues with my memory. I was also highly irritable and agitated, with no real reason. It was so frustrating for me, and I can’t even imagine what it was like for everyone around me. I felt overwhelmed by how I was feeling, and no real reason as to why I was feeling this way.
- Towards the end of April I started having troubles with my motor function. I would unexpectedly lose function of my hands or arms or legs. My paralysis also began to pick up. What was a few times a week, had become a daily thing. As the summer progressed my paralysis became longer. It could last up to 8 hours. Where I couldn’t move, or lift up my arms.
- Given my crisis situation, while waiting to get IV antibiotics I was started on oral antibiotics on May 2 by my naturopath.
- May 12 started my care with a new MD. She specializes in complicated health issues, and it was an amazing visit. I am still in her care and couldn’t be happier. She is an amazing Dr that has been added to my team…. I so love her!
- June 1 – started a series of ER/Urgent Care visits that I would rather forget, but it is part of what happened so I will share them with you…..
- June 1st – ER visit for chest pain and discomfort; everything came back clear
- June 8 – Urgent care for difficulty breathing and abdominal pain; Diagnosed with pneumonia
- June 24 – I was airlifted to ER with stroke like symptoms – I was admitted for observation overnight; the hospital Dr that saw me the next morning was NOT kind at all. He said some awful things within ear shot of me. Certainly didn’t make me feel very good.
- June 29 – Went to urgent care as my breathing was getting more difficult as the day had gone on. It was the same Dr who had found my pneumonia. She was so kind and immediately told me that I needed to go to the ER as she thought I had a pulmonary embolism. ER almost sent me home without checking anything, had it not been for the Urgent Dr writing a letter and advocating for me. The ER Dr did find a blood clot in my lungs, and over the course of the next month they found another that they think was there before, but had just been missed. I was started on Eliquis immediately. I was sent home with my new RX and told to follow up with my primary care.
- July 1 – I was airlifted a second time for possible stroke, with stroke like symptoms. And the same Dr was on duty and not terribly happy to see me. They watched my vitals for about 30 minutes and sent me home.
- My ER visits started spreading out a bit more.
- During this time we were blessed by a friend with purchasing me a pulse oxygen monitor, a blood pressure cuff, shower chair, safety handles, and a wheelchair (as the company called asking for mine back)… these gifts meant more than I can put into words, and have been invaluable over the last few months since getting them. I don’t know what I would have done without them!
- July 2 – started having troubles swallowing and within the next couples days I started having issues eating, swallowing, breathing, etc.
- July 7 – I was switched to Pradaxa given a possible allergic reaction to Elliquis
- July 11 – I was brought in to my practice on an urgent visit because I was having such a difficult time swallowing and breathing. They figured out that the Pradaxa was causing silent reflux and I was started on the max dose you can take, to get it under control
- I was lucky enough for it to be recommended for me to go back and see the original Lyme Dr that I had seen back in 2015. He wasn’t so sure back then that it was Lyme, but my current MD was quite sure that is what we were dealing with, and that I should give him another try. So I did… and am so thankful I did. Lyme had become a personal battle for him since I saw him last, and he believed that I definitely have it.
- July is also when my abdominal pain started… this, as you will see, grew into its own beast, as it brought on ER visits, 2 endoscopies, etc…
- On August 1st I took another step in dealing with my chronic illness, and decided to start therapy. She specializes in Chronic illness and has worked in the medical field for a long time. Doing this on a regular basis has been hard since we live in La Pine and I can’t drive. Lots of times I have to ride with Kenny for the day, or gas kills us from him running me home and then going back in to work. So it has become sporadic at best.
- Totally forgot… during the course of this, my LLND said that I needed to stop all antibiotics, given that he thought I was having a dangerous herx reaction, and because he believed my body simply cannot handle them. The goal became to start IV antibiotics as we had hoped. This has been indefinitely put on hold because he does not believe, after all that has happened over the course of the next couple months, that I am a candidate for antibiotics at this time. My body can’t handle them, as it doesn’t detox much at all.
- August 6 – we went back to the ER; this time for abdominal pain. The Dr I had was SO kind. She was very concerned that I had pancreatitis, something wrong with my gallbladder, etc. When she pressed on my abdomen she was startled by how tender it was. I immediately started crying. They found some kidney stones, which she said shouldn’t be hurting me at all. And otherwise everything looked fine.
- August 11 – was taken to the ER via ambulance from the Urgent Care due to the tremendous amount of pain I was in. They didn’t want me waiting until Kenny could get free at work. The Dr wasn’t the most pleasant, and was exasperated with me.. First thing I heard in my room was “she was JUST here and had CT, X-ray, blood work.. WHAT ELSE DOES SHE WANT US TO DO!” I had been crying from the pain… and just wanted to crawl through the floor. In the end he said I needed an endoscopy as soon as I could get in to see someone. This started another battle to find someone who would take my insurance. We ended up heading to Portland to OHSU on Sept. 13. Everything looked “good”, gastritis, biopsy taken to check for infection which came back fine. They found a small hiatal hernia, but she said it shouldn’t bother me at all.
- August 14 – I was switched to Xarelto for my blood thinner, as I was not tolerating the Pradaxa well at all. I’m still struggling with my blood thinner, but it’s at least tolerable now.
- August 21 – was the solar eclipse.. For me this is the full moon on crack. And we all know how much I LOVE the full moon :-\ The eclipse was approx 2/3, went out to look and ended up collapsing. Kenny caught me. Had a seizure about 5 min later as the moon started uncovering the sun.
- September 25 – I ended up back in the ER due to a possible head injury. I had bent over to put something away, and didn’t realize my head was under a shelf. I stood up and caught my head on the corner of one of our pallet shelves. It disoriented me and made me dizzy. I ended up falling down. Blacked out for a moment. ER found nothing wrong, thank goodness, and I was sent home.
- October 13 – I woke up during a seizure in the middle of the night and suspected I had been having night seizures again for the 3-5 days prior. They come off and one but seem to come in clumps
- October 17 – I ended up throwing up blood, was in for an endoscopy the following day since it was emergent. My new GI Dr found SO many pinhead sized peptic ulcers, not in my stomach but down past my stomach almost as far as her scope could go. They believe it was because I had been brought off my prilosec so quickly. My body just couldn’t handle it. One had hemorrhaged, but was clotted over.
- October 23 began my new journey to treat my Lyme Disease and Bartonella(and probably Babesia). I started LDI treatment, which is Low Dose Immunotherapy. At this dose we noticed no difference, but at time went on more changes have happened..
- October 24 – I headed back to the ER at the instruction of my pulmonologist, as I was having issues with my heartrate, standing and breathing. He was concerned it was because of internal bleeding or another pulmonary embolism. It ended up being dehydration, and they’re unsure of why I was having issues breathing. He could hear the tightness in my airway, but had no idea why.
- Approx Oct. 27 we began seeing the true positive affects of my LDI treatment. For the first time in months I was able to write a handwritten note. It wasn’t 100% back, but I could write and it didn’t look like a preschooler learning to write their alphabet!
- November 1 – I went in for IV treatment and second LDI. This appt did not go as we had hoped as I started having a reaction to the Vit. B in the IV fluids. My body simply cannot tolerate Vit. B. They caught it right before I had a seizure, but within a couple minutes of switching out the vitamins and minerals for just IV fluid I was feeling better. The LDI shot was given while we did fluids, and boy did my arm swell that week! BUT this was the shot we had the most remarkable improvements with. I started walking! I still can’t walk long distances, but I couldn’t walk around the house. I also started walking UP the steps!
- I was tested for a rare disease to make sure I didn’t have something else going on, and the tests came back negative.
- Another thing that I have been struggling with so much over these past months are chest pains, horrible sensations, etc. Sometimes they’re SO intense and it makes me so uneasy. This has gotten better with my LDI treatment, but can still be very overwhelming when it does happen! I have been to a cardiologist and everything came back clear… so at least we know that. It is very common for Bartonella to cause chest pain, abdominal pain, etc… all things that I am struggling with greatly!
I am SO sorry this is so long, but there is so much that I needed to catch everyone up on! If you’re still reading… thank you! I appreciate all the love and support. I am also really trying to do a vlog about what has been going on, but have really been challenged with finding the energy since my last video I posted. I will be trying to do an update more often though….
Feel free to check out my vlog >>>>>HERE<<<<<<
I also have a Amazon Wish List for Medical supplies that you can view >>>>>>HERE<<<<<<
Our GoFundMe can be found >>>>>>HERE<<<<<<