New challenges

As I near the 1-year mark of my mom's passing, I am surprised about how well I am doing. In some ways it has become a little more manageable, and in other ways, I'm missing her even more. But I had no idea at the time that all of this happened, that one day I would be able to wake up each morning and actually be able to function. Her passing is the single most difficult thing I have ever had to deal with in my entire life. These kinds of events really put things into perspective and remind you that everything else in life is so trivial and benign. This new way of dealing with life has really helped me through another very difficult transition:

On Friday, April 13th at around 5:30 pm I was at the stove cooking dinner when my right ear suddenly became full like I was in an airplane or on a steep hill and it just needed to pop. As I continued to cook, I kept poking my ear, massaging my neck, yawning...everything that I would normally do when my ear was plugged. Nothing made that feeling go away. When John got home from work, I mentioned it at dinner and he thought that it was really weird that it wouldn't pop! Over the next few days I continued to try to get it to pop. I tried flushing it out with water, sticking q-tips in there, and sleeping on that ear to see if I could get it to drain. My regular doctor had cleaned that some ear out a few months prior when it was clogged and making me dizzy, so I tried to make an appointment with her to see what she thought. I wasn't able to get in to see her and John kept urging me to go to Urgent Care. By this time it had been about 5 days, and even though I thought going to urgent care over a plugged ear was silly, I went. At about this same time, I also started to hear a mild "white noise" in the plugged ear too! Well, the nurse at urgent care thought that I might have some fluid behind the ear drum from a cold, and told me it would go away after I started feeling better. She also told me to see an ear specialist too, just because I had problems with this ear before, and maybe I would need tubes or something to help it drain. As I waited almost another week for my ear to drain and to see the ENT, nothing improved.

My first appointment with the ENT started out pretty normal, by this time my cold had turned into a full blown sinus congestion and headache mess, so I figured he would diagnose me with some infection and send me home with some pills to clear everything up. Well, he did say I had a virus, but he also said that the virus may also have done some minor damage to my inner ear and wanted me to do a hearing test. This was kind of shocking, but after the hearing test, he did say that I had minor hearing loss due to the virus and that an intense course of oral steroids would be the first step in stopping the damage from getting worse. He also recommended that I get a CT scan to rule out a tumor causing the hearing loss. Over the next 16 days, I was really starting to worry. I knew that the chances of me having a tumor were so slim, but I also thought about how much my family had already been through, and we couldn't handle any more bad news. After the longest 2 weeks of my life, a tumor was finally ruled out as the cause, but the steroids had not helped and my hearing loss had gotten worse. The "white noise" that I had been hearing was diagnosed as Tinnitus, and it was becoming increasingly loud as the hearing was diminishing. Our next step of action was to inject the steroids into my ear canal through my ear drum. My doctor hoped that having the steroid sit on the nerves back there would help stop the virus from damaging my ear even more.

The first injection was relatively painless (although I did pass out from the mere thought and sensation of someone sticking a needle through my eardrum). A few weeks later we did a second injection, and this one hurt a lot more! Soon after, I was in so much pain that I called desperate for some help, and it turned out the needle had left a large scab on my eardrum and every time I laughed or coughed or breathed or swallowed or yawned or ANYTHING it would stretch and tear and cause excruciating pain! On top of all of this happening, my hearing was only getting worse, and my tinnitus louder. Adding to all of that, was anew, quite debilitating symptom...vertigo.

Finally I listened to some family members and went for a second opinion, and this doctor offered a new, more treatable diagnosis. Meniers Disease! This disease has to do with water retention and can affect some of the glands in the ear and cause hearing loss, tinnitus, and vertigo. Yay!! I went home with some new hope, some new meds, and a diet to follow. After a few weeks though, with no improvement, and some nagging feeling telling me that I had a false sense of hope, we came to the conclusion that the first doctor was more accurate with his diagnosis. My symptoms were not aligned with Meneirs Disease as I had hoped. But by this point, both doctors were out of options and advice, and my hearing had reached the "profound" level of loss. I was simply sent home with the "live with it" attitude.

For months I tried my hardest to stay positive, to remember that there are other people out there with much worse diagnosis and dealing with much harder struggles. I had learned to live with other disabilities in my life, such as my lack of vision out of my right eye, but this sudden onset was making it very hard to adjust. The tinnitus gets so loud and distracting in noisy environments, that I can't even participate in conversations or have a good time. I get headaches from my brain working so hard to overcome the jet engine in my right ear and having to discern all of the sounds in my left ear. It is hard to describe what happens to your hearing when lose function on one side, but I am no longer able to locate where sounds are coming from (such as when someone calls my name from another room or in a busy location) and I turn in circles as they keep repeating my name so I can locate where the sound is coming from! Also, now that I can only hear from my left side, EVERY SINGLE SOUND has to be processed by that ear! Imagine half of a bust highway being shut down, and now all of the traffic is being diverted down to the open lanes...it is a mess. Even when someone is talking directly into my good ear, it is still hard to separate their voice from all of the other nonsense happening around me. I fell so left out of social situations because I can't participate in the conversation as well, or I have to keep asking, "what?!" a million times!

Finally, I found a tinnitus clinic at OHSU that could possibly help with reducing my tinnitus so at least I didn't have to deal with that when trying to function in my daily life. But alas, after forking over almost $700 out of pocket, the therapy was frustrating at best, and in order to continue, I would have to purchase a hearing aid. The only bright side was having the tinnitus specialist say, "that is really loud" when we were working on matching the sound of my tinnitus. I finally have some validation that I am indeed hearing this obnoxious sound 24/7 and that it is indeed freakishly loud!

So now, I guess I am going to have to be my own advocate. I am finding some support networks and trying to find out how I can get used to this new reality and move forward. I know deep down, that compared to life's other huge struggles, this is pretty minor, but it is definitely something that I never imagined I would have to deal with, and something that is bringing me down. I do enjoy making fun of myself and the funny things I encounter with my new disability though. It makes it a little more manageable knowing that it can make others laugh :)