Dear 2017 this year I met a LOT of medical professionals. I met Preston! He is the new guy on my team at work. I'm glad I got to meet him before I went on long term disability. I met some super nice ladies that brought me food! I met a lot of people through joining Younique and Amare and by accepting invitations to parties. I met Stephanie Rupp. She gives essential oil classes at her house. I met people through Facebook groups that I joined searching for answers and connections. I have really met a Lot of great people. This was a good prompt. I have been so lonely in my illness. It is nice to be reminded that I am not alone.
Dear 2017 this year I was diagnosed... Hahaha. This seems to be the theme of my blog lately. Ok. I will recap the diagnoses that I received this year. This year I was diagnosed with Baseline Tachycardia, Dysautonomia, Small Fiber Peripheral Neuropathy, Adenopathy, Sarcoidosis, Lactic Acidosis(we cured that one. Yay), Chronic Dehydration, Pneumonia(cured a couple times), Urinary Tract Infections(cured a couple times), Staphylococcus Aureus in my left Maxillary Sinus(ongoing). That's all I remember right now. But I think that's more than enough. Don't you? That doesn't include the diagnoses I had before the year started. I don't like this prompt. It's depressing.
May 2017
May was a big deal because I went to the Mayo Clinic in Rochester, Minnesota. I had high hopes. I was still under the illusion that they would find the problem and fix it. That led to a lot of anger. I am learning that anger is not a bad emotion. It is how you express it that can be bad. I get angry sometimes. That's ok. It's healthy in fact.
I posted a lot on Facebook in May. Travel added some fun to the process. The Kahler was not my favorite hotel but you couldn't beat the convenience. I could got to my appointments and leave my husband in bed when I needed to. I also was not a big fan of the Mayo cafeteria. They were good for breakfast and very affordable. The restaurants in the hotel were really good but they were also very expensive. We found a nice little place with great burgers called CB3. Food was a big expense.
Tuesday, May 2, 2017 - I saw a neurologist at Mayo. In her defense I had unreasonable expectations of her. She didn't even come close to meeting them. I do not recommend her if you have Dysautonomia or Sarcoidosis. I'm sure she is great for other things. Just not my things. Another thing in her favor...She diagnosed me with Small Fiber Peripheral Neuropathy in my first visit based on the physical exam. One of the things we did was the Romberg test. You stand up straight with your arms straight out in front of you like Frankenstein. Then you close your eyes. For a normal person nothing happens. For me, I fall backwards and then I cry. I had a hard time doing it. Every time I would start to fall I would open my eyes to fix myself. She had to reassure me that I could trust her and that she would catch me. Trust doesn't come easy to me. That's probably why I cry. I had taken a list of ALL of my symptoms. She put in orders for several tests and visits to other specialists and I would return to see her before I went home. I learned from another doctor months later that the reason this happens is because the nerves in the bottom of my feet don't work like they should. Normally you can feel the floor beneath you to balance yourself. You don't need vision for balance. But I am not normal, am I? I need my eyes.
Wednesday, May 3, 2017 - I saw the sleep medicine doctor. It was a fun surprise because it was the same doctor I had seen several years before. He scheduled another sleep study, congratulated me on my weight loss and reminded me of the health effects of sleep apnea.
I also saw Endocrinology. This was a really good visit. He agreed with me that my Diabetes, although uncontrolled was not bad enough to cause all of my other health issues. He suggested the Keto diet. I told him I had already been on it for almost a month. He was impressed. We discussed medications but I wasn't ready to take any at that time.
Thursday, May 4, 2017 - I saw the Rheumatologist. He was not able to diagnose anything but he was able to rule things out. We talked about my Fibromyalgia. We discussed MCAS. He said the blood tests did not show I had that. We also discuss Sjogren's Syndrome that would explain the dehydration, dry mouth and dry eyes. The blood tests and 24 hour urine did not show I had that but he ordered a Chest CT. That was probably the best thing that happened at Mayo. I am so grateful for that Chest CT now. But at the time he just said he wanted me to follow up with Pulmonology. That department was not able to get me in while I was there and that was very stressful at the time.
I also went to Gastroenterology. She was very nice. She explained to me that Irritable Bowel Syndrome continues to get worse. That was very upsetting news. I thought I had that under control. She ordered a test for Gastroparesis. It actually came back the opposite. My food passed through my digestive system faster than normal. We discussed dietary changes that may help with digestion. I'm so tired of dietary changes. I wish I could just eat whatever I want. French Fries and Ice Cream please.
Friday, May 5, 2017 - I saw the Internal Medicine doctor. I loved her! I wish I could keep her for my every day doctor. I loved her. She really listened and really cared. I didn't feel like just another person coming through the Mayo Clinic. We talked about everything in her office first and then we went into the exam room. She did the most thorough breast exam I have ever experienced. She ordered an MRI of my brain because of my Migraines. That would prove very important in November. Every doctor I saw ordered more tests and more referrals. I had my blood drawn almost every day.
I had my Tilt Table Test that day. It was horrible. There were two people performing my test. They treated me like I was just another piece of equipment in the room. They were complaining about their coworkers the whole time. I didn't pass out. My heart rate and blood pressure rose. The conclusion was Orthostatic Intolerance. Translation: I can't handle standing up very long. When I was done I felt like I was going to die. The fight or flight took over. I had to sit for a few minutes but as soon as I could get my legs beneath me I got out of there as fast as I could. I did not want to look at or speak to the people who had tortured me. I got to my husband in the waiting area. He was upset because of how bad I looked. He wanted to go have a word with my tormentors but instead he took care of me. I still don't understand why he couldn't be with me for that test.
I had my Chest CT that day. It said that I didn't have what they were looking for but I had adenopathy and granulomas in my lungs. It would feel like forever before someone would explain that to me.
I saw the geneticist. I am sorry if I sound unkind but I am just telling you my feelings. He belongs in a lab somewhere not interacting with patients. He was so clinical. I felt like an idiot for not understanding how genetics works. I knew I wanted to be evaluated for Ehlers-Danlos. I thought that the geneticist does some tests and tells you what is wrong with you. In fact there are very few tests available and according to him most insurance won't pay for them. He said that although I met some of the criteria for Ehlers-Danlos it was not enough for a diagnosis. He did find a condition that was possibly the cause but it came back negative. At the end when he was done with his job a little personality popped out as he talked to my husband about Mopar racing.
Saturday & Sunday, May 6 & 7, 2017 - We spent time with old friends. It was nice.
Monday, May 8, 2017 - I saw a Dermatologist. I did not have any Sarcoidosis outbreaks on my skin at that time. She talked to me about my dry skin and how to take care of it.
I had a Pulmonary Function test. It was exhausting. If I didn't get the results she wanted she made me push harder until I did. They gave the best results to the doctor to read. They said it was normal.
I went to see the Cardiologist. That was a tough visit. I remember crying. He said that I have Baseline Tachycardia, Dysautonomia and Orthostatic Intolerance. He confirmed that my heart problems are neurological and not due to a heart problem. He gave me a prescription for compression stockings, talked to me about eating more salt and drinking more fluids. He was very nice.
I had an MRI of my head. It showed a partially empty sella and a sinus infection.
Tuesday, May 9, 2017 - I saw a Women's health doctor. She told me that my hormones are on a roller coaster and my body is getting ready for menopause. She also said that this could go on for years. She recommended an estrogen cream. She said that would also help decrease Urinary Tract Infections. I'm no longer using it because my current endocrinologist doesn't want me to. An important thing that happened in that appointment was that she told me I had Neuropathy in my genitals. We talked about my sexual dysfunction. Those are things that are hard to talk about. But guess what therapists! You can't just blame it all on child abuse. It is a real physical problem. I have avoided telling doctors about my mental health issues and past traumas because I want them to find the physical problem and not blame it on that.
I went back to the neurologist. She didn't have any new information for me. She told me I was very healthy. That was the wrong thing to say. I started crying and told her that if I were healthy I would be working. If I were healthy I would be in school. If I were healthy I would be working out with my trainer. I felt a little bad because I made her cry. She apologized. She did congratulate me on getting so much done in such a short time. She was impressed.
I had my sleep study that night. Not my favorite.
Wednesday, May 10, 2017 - I had my return visit with the sleep medicine doctor. He said my apnea was improved but it still needed to be treated. Now if I don't sleep on my back I don't have any problems. The problem with that is that I do not stay in one place while I sleep and asking me to do so is ridiculous because, guess what! I don't consciously decide when to roll over or move a leg or an arm. It just happens. We discussed that I cannot tolerate the cpap machine. He suggested I get an oral sleep appliance from a qualified dentist. I have one now.
I went to Urology. That wasn't helpful. She thought I was seeing her about my recurrent Urinary Tract Infections. I thought I was seeing her about excessive urination. She said she couldn't help with that.
We drove back to Saint Cloud for the night.
Thursday, May 11, 2017 - We flew to Arizona.
Saturday, May 13, 2017 - We participated in my granddaughter Esterlynn's 1st birthday party.
Sunday, May 14, 2017 - We drove to Laughlin, NV
Monday, May 15, 2017 - We drove home to Utah.
Wednesday, May 17, 2017 - I went to the dentist. I ended up needing 3 crowns this year because of grinding my teeth. My teeth are cracking.
Thursday, May 18, 2017 - I went to see a new Endocrinologist to see if she had any insight. She didn't address the dehydration or frequent urination. She said it was caused by Diabetes. When I asked her about treating the Diabetes she seemed to get angry and told me she wasn't treating me for Diabetes, that is what the Nurse Practitioners are for. I won't be returning to that office.
I ended up in the ER that afternoon for dehydration.
Friday, May 19, 2017 - I saw my primary doctor and told her I wanted to go back to work on Monday. She signed the form letting me go.
Monday, May 22, 2017 - I went back to work!!!! I love my job. I had my walker. I spent the first day doing trainings and reading email.
Tuesday, May 23, 2017 - I went to work again! After work I went to see my Cardiologist. He was very interested in my visit to the Mayo Clinic. He encouraged a Beta Blocker for the tachycardia. I think I waited a while before I accepted.
Wednesday, May 24, 2017 - I went to work!
Thursday, May 25, 2017 - I went to the dentist for one of the aforementioned crowns. I went to the ENT to talk about my sinus infection. I got a new antibiotic.
Friday, May 26, 2017 - I went to work! After work I went to the acupuncturist.
Monday, May 30, 2017 - Memorial Day
Tuesday, May 30, 2017 - I didn't go to work. I went to my primary doctor.
Wednesday, May 31, 2017 - I was late to work but I did work a good part of the day.
One day. I don't remember which. I was sitting in the cafeteria at Mayo and I got a call from the University of Utah to schedule my autonomic testing. Are you serious?!! I told them I was already getting that done at Mayo but I would like to use them for follow up care. I cried when I got off the phone. They never called me back.
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