Happy Birthday to Me-NOT! Part II

When Mike pushed me in, I was taken aback by all the different languages spoken. There were at least four different translators for patients who had traveled from all over the world! I knew Dr. Roland was a Specialist but was he really that special? My stomach was upset and my heart was pounding. As I waited, I looked around the room. I wondered if anyone else ‘had’ what I had. I did a lot of wondering while I waited but was called back within a matter of minutes of arrival. I felt I was entering the gallows or something, I had no idea what to expect. The compassion from every single person was overwhelming to me after my past year. Their scheduling made it flow from one test to another (except for my puke time).

The first test was Audiology. It was straight forward-I put on a set of headphones, listened to different sounds, tones, and words. It didn’t set off any symptoms, and I passed everything. Mike wheeled me off to the next test (yes, this AMAZING man stayed with me throughout all the testing, patiently waiting outside each area)  a Rotation Chair. It looked simple enough, just sit back in a computerized chair housed within a small round room. As I entered the room, and Mike called me, “Don’t forget your bag”! I rolled my eyes with embarrassment but snatched it. The technician put a pair of goggles on me and explained the chair will do all the work, slowly rotating back and forth and I’d be tracking tiny lights. She closed the door, black, pitch black. I waited and  began to feel sick. I hear the motor start and the chair began moving, Tiny lights began to twinkle, and I thought to myself, “This is easy”. That changed during the second part, I was going to be sick but felt too embarrassed to utilize my puke bag. “Hey! Can you hear me? I’m going to be sick”! The door immediately opened, off with the goggles, and I plopped into the wheelchair and pleaded for Mike to hurry! This place had so many bathrooms, I knew I wasn’t the only one to have this response. Back to finish the test, and now I dreaded the dizziness/vomiting connection. It happened again, but this time I chose to use my bag. A voice reminded to keep your head up, and I worried if she ‘knew’. This tests was over, and I was feeling like a limp rag.

Next stop, the CDP Lab (Computerized Dynamic Posturography) where they put a rigging on me for support, and stand on a platform. Really? I looked like I was going rock climbing or something, but did as I was told. ‘Stand on this, and look at that’ was my interpretation of the instructions. “Okay, I’m ready. Whoa! Wait! Stop! Please stop!” I wailed. They quickly stopped, and someone came in to reassure me I could NOT fall, I was harnessed. On the second try, I was able to do enough of the test for them to evaluate. With this test, not only the floor is moving but also the ‘horizon’ you’re staring at. Yuck, another trip to the bathroom! This day was not going to be easy. Next stop, the VNG Lab. I’d already had the ENG test battery not once, but twice during the previous year. Both times I ‘reacted’ with Nystagmus and vomiting, yet that ENT would not refer me (until the ‘meltdown’). I really dreaded this test, and my anxiety was turning to panic. I knew this would make me sick, I just knew it! I was 5 hours into testing and I wanted to leave. I pulled Mike close, “I want to go”. He grabs the wheelchair to start off to the bathroom, “Okay, no problem”. “No Mike! I want to go home, I’m so tired…”. He quickly stopped, “You mean quit? After all you’ve been through? All I’ve through? Not going to happen. What’s going on”? I dropped my head and began to cry, “I know this test will make me sick, I don’t want to do it”! “Margaret, almost every test makes you sick, this is the last one. You can do this, I know you can”! See? Mike is not only my husband and best friend but my cheerleader, my advocate, my everything! So when my name was called, I knew I could do this dreaded test.

Again I was given special goggles and lay back on a table. The room was darkened, and I start my deep breathing to relax. The technician could probably feel my anxiety! She assured me ‘I’d do great’ and explained in one part, she’d put warm and cold air in my ears, and the goggles filmed my eye movements. The prior ENG tests had used warm and cold water (which drove me crazy in and of itself), now air? The ENG/VNG are a group of test that evaluate eye movements with the tester moving your head into different positions. With every part of this test, my eyes were doing their ‘thing’ jumping all over the place, and I ‘only’ had to stop twice to use my bag. By this time, I could have cared less who saw me get sick, but from the technician’s face it was probably the first time she saw someone throw up into a Christmas bag! I find great humor in this now, but back then it was horrible. After these tests were over, I had to lay in the room for awhile, I was exhausted. It was all finally over. When I looked outside, it was getting dark! My gosh, how long have I been here? It was 6 pm! I panicked, wondering if the doctor might have gone home when I heard my name called. As Mike pushed me in, I was so full of questions I drove him crazy. This was my longest wait (maybe 20 minutes) and by now Mike was the one exhausted (from my questions).

When the door finally opened, my face was buried in my Christmas bag. The doctor had such a warm and welcoming attitude, although he shook Mike’s hand first, hmmm. As I wiped my mouth, he introduced himself. “What did you find out?” “What did the tests show?”, I blurted out. “Well, it looks like you caught a virus (again with the virus!) that has affected your Labyrinth system. It settled on your 8th Cranial Nerve, and because it was there so long, it’s caused a lesion (scar), and I’m sorry, but you’ll more than likely deal with this your whole life. I want you to start VRT, and work with a PT. There are definitely better prescriptions, I’ll give you”. My brain shut down at “your whole life” part, and my face goes back in the bag. There was finally an answer, but it wasn’t the one I wanted. I wanted to hear, ‘do a little bit of therapy and off you go, all fixed’, but I realized this was going to be a journey, another long journey. Follow up appointments were set for one month, and an evaluation with the PT (he had a particular therapist he wanted me to see). As Mike and I left, I was shocked to see all the staff that had greeted us, and it was  7 pm! “I hope everything went well” they chimed, “and don’t forget your Christmas bag! I see you did some shopping”. Really? I thanked them politely, and we exited the circle drive, I knew, I just knew, life would never be the same.

 

https://vestibular.org/

Happy Birthday to Me-NOT Part I

In so many ways, getting the appointment with the Neuro ENT was a huge relief, yet it brought a whole new set of questions for me to mull over. By this time, I’d done so many Google searches, my computer should have melted! The web can be a very scary place, it could be this or it might be that…one can go crazy. Which I did, much to my husband’s dismay, “Why do you do this to yourself”? I’d come back with, “I’m just trying to figure out what’s wrong with me”. Followed by a weary, “That’s why you’re going to Dr. Roland” from Mike. “But it’s my birthday”! “I’m supposed to be having fun”! “I can’t do ______ or ______”… “I want to _____”…ME! ME! ME! I was sick of me, so I don’t see how Mike wasn’t, but he never waivered.

Oh my gosh, the things Mike put up with and did for me! He takes the ‘For better or worse, In sickness or health, etc.’ of our vows very seriously. He was my everything by the time of the appointment. He took off work for all my appointments (as I was usually too sick/dizzy to drive), he added housework and meal preparation to his already full schedule. I was pretty much bedridden (I’d broken so many bones, I was scared to walk). I still had ALL the original symptoms. The minute vertigo began, I started vomiting. I was so sick of being sick! The Scopolamine patches I’d worn behind my ears for a year were giving me an allergic reaction of ‘weeping’ wounds (I know, GROSS!).  I was using a walker for safety and was mortified. “I’m too young to use a walker”, I’d whine to Mike. Really? I was a Pediatric therapist. There were MANY children using walkers (a different type, but a walker all the same), but I hadn’t yet grasped the concept of losing the freedom to just ‘get up and go’-false pride in it’s purest form. Mike was/is my one’constant’during this time. He is an amazing man, and he’s mine!

Dallas is a 6-hour drive from us and since the appointment was at 8:30 am, we went the day before. The anxiety I felt by this point was unbearable. The car trip was very challenging for me (too much movement), and I was throwing up most of the way. A lovely trip, just lovely! Here it was my birthday, yet all I wanted to do was curl into a ball in the bed, and I did. We were in a big city, all the best restaurants at our choice. The problem was, I was (as usual) very nauseated. Prior to all this, I’d have to classify us as ‘foodies’. Some of our best vacations were food and wine based, consuming delicacies from 5-star restaurants. The ones in Dallas were calling to Mike, like Sirens singing their song to him. I got so sick of his “What about this kind of food”? and “Do you think you’ll want to eat….”? I yet once again, let loose on him, “Mike I don’t want to eat now. I don’t want to eat later. I don’t want to eat anything. Please stop talking about food and eat something”! I honestly don’t remember, but I don’t think he ate anything that night. I was in bed, not going anywhere, and shutting down. It was a very long night, neither of us slept. Mike was just there for me, holding me, reassuring me of my ridiculous fears until the alarm went off. Again with the food questions! Did he learn nothing from last night? He ate the breakfast at the hotel, and you know how good they are. This poor man wasn’t going to get a decent Dallas meal on this trip!

I sat in the shower, trying to ‘get okay’ with what was about to happen. That was the problem, I had no idea what to expect. My medical records had been sent, I’d filled out a ‘book’ of new information for the new doctor, but I had nothing to think about but my Google searches. As we drove downtown (you know, where all the food is!), to his office, we just held hands. Oh, we also argued about traffic. Mike was fine, but I was a mess as the grip on my ‘puke’ bag tightened. “You’re going too fast Mike”! “Margaret, it’s Dallas! I can’t slow down”! “Well, stop swerving, it’s making me dizzy Mike”! “I’m not swerving, I’m just changing lanes”. Oh, I just wanted this OVER WITH and it hadn’t even begun!

We pulled into the big circle drive of the huge building that housed Dr. Roland’s office and were met by VALETS! I felt so horrid, yet so special at the same time. The man helping me said, “Ma’am, you forgot your gift bag”. “Uh, thanks so much”! My ‘gift’ bag was my bag to use in case I got sick. It was a lovely Christmas bag (it was the season), that was lined with MANY plastic grocery sacks. My dad came up with this concept when I was pregnant. I was lucky enough to be sick 24/7 for the entire nine months with both children! They were born in the late ’70s, my doctors could not make sense of it. Now, it seems to be ‘trendy’ (think Dutchess Kate Middleton pregnancies), and it’s medical name is Hyperemesis Gravidum (translation-Terminal Vomiting). So, although one could call me a ‘professional at puking’, I still didn’t like doing it in public! I was escorted in, and introduced to a woman who asked, “What doctor are you here to see”? I told her, and was offered a wheelchair, really? I took it, and off we went to be personally escorted to his office. “I hope everything goes well for you”, she said so sweetly. Wow! What a nice way to start!

 

https://vestibular.org/