My Story

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April 12, 2013 - New Brighton, Pennsylvania

I’ve always said denial is underrated. Why deal with something when you can ignore it? Who knows, It might just go away. But here I am with the distinct feeling that God wants me to write this stuff down. Deal with it. He always wants me to deal with it. Maybe there is something that I am missing, who knows. In my early 30’s I had a migraine in my left eye that made everything a total blur. I was recommended to an ophthalmologist who (since it had cleared up by the time I got the appointment) said no big deal, but I had Starguardt’s. Not a total surprise. It was what I was afraid of that sent me to her. My brother had had it since his early 20’s. Her enthusiasm to examine this rare disorder aside, she thought that I might ‘beat it’ since I had no symptoms as of yet. I was 41 or 42 before I would experience any real symptoms. I was driving home from work when I noticed the blur. I made a mental note to make an appointment with the optometrist. I must need a new prescription. It was spring, I spent all summer trying this, trying that. Visiting another ophthalmologist for what we thought was double vision. Experimented with prisms, all wild goose chases. By September I had been experiencing ringing in my right ear. I had had it before, the doctor said sinuses. OK. I ignored it until I realized that my hearing was significantly diminished. I ended up down at the hospital at a specialist. After an MRI we found out that I had a tumor growing from behind my right ear that had damaged the nerve. It had grown quite large and, running out of room, snaked down and around my throat. Of course all this had put a stall on figuring out what was going on with my eyes. Surgery was scheduled for January 28. (MY Dad’s birthday) I was sent to yet another ophthalmologist to make sure that the tumor was not affecting the optic nerve. After testing I was told once again that I definitely had Starguardt’s, was shown a map of my missing vision and told no, the tumor was not affecting the eye. The surgery went well. It was a nightmare, but it went well. I was on the recliner in our living room for 8 weeks straight, morning and night. I strongly recommend that everyone have a recliner comfortable enough to live in. You never know. I had trouble swallowing and tasting at first and a lot of pain. I had lost all hearing in my right ear and had increased ringing. Mostly, though, I was weak and tired. After 10 weeks I went back to the job I had at the time cleaning our church. I took it slow, but eventually got my stamina back. We had our first wedding in June and another in October. We were starting renovations on a new business and I decided to start dealing with the vision problem again. By this time I could see the blur. It was a cheerio, vision in the middle was OK and outside the circle, but there was a missing ring right I my central vision. In the ring was a neon blue snowflake. I painted it so people could understand what my problem was. I managed with the optometrist to decide on a prescription that allowed me to see as well as I was going to and began to learn to work around it. I needed to keep it above the horizon when driving so that cars would not disappear as they passed me. In some ways it was easier now that it was bad enough to understand. I was learning to cope. Unfortunately I was not coping with the ear ringing. Daftness had sent me for a loop at first. I would go into a complete panic if, say, the phone rang. Where was the noise coming from, could I find it in time? With only one ear you have no clue where a noise is coming from. Worse, though, was the noise. It was loud to begin with, but got louder if I heard any actual noise. To the point of each syllable of each word someone spoke. By the end of the day, I was totally worn out. I stayed away from any activity at night and usually broke down in tears sometime between 7 & 9. When I couldn’t take it any more I let the doctor prescribe something. He had been telling me it would go way on its own and I wanted to avoid meds. We were approaching a year with no change I couldn’t keep going the way things were. After a few trials, we settled on Elavil, an antidepressant. It helped enough to keep me sane. I complained about weight gain, but wasn’t willing t o go off it. Again I tried to settle into my new normal. I had decided to stop driving when not necessary. On Mondays I drove to my daughter’s house and let her drive to run our errands. I was trying to deal with a floundering business, but I thought I had everything else under control. 4 years after my surgery I had yet one more MRI. I planned to petitioning for a longer time between them as they also were torture for me. Instead I was told that the tumor was growing and would need radiation. OK, they had talked about radiation from the beginning. This would be the end of it, right? A visit to the radiologist would sharply change my view of the matter. I thought we were talking about one treatment. A big deal, but then again not. But no, we were looking at 6 weeks of daily treatments. To say that I was shocked is an understatement. I broke down. On top of this I needed to have a full tube MRI to pinpoint exactly the tumors location so they could treat it. I told him of my total panic and that valium had little effect on me. We settled on ‘conscious sedation’ which means put under as far as the patient is concerned. This had its downside, as you needed to be admitted as if you are having surgery and it take about as long. People were praying for me. I was supposed to get a phone call from the doctor telling me that they couldn’t find the tumor. It didn’t happen that way. We scheduled family and friends to drive me the 1 hour each day to the hospital to have the treatments. They had prescribe me Adavan to cope with having my head bolted to a table for 15 minutes each day and besides that it seemed no big deal, at first They had put me on steroids to deal with some initial nausea which caused severe night sweats. I got them to reduce the dosage and things got better. After a week my taste began to change and my hair to fall out. I was constipated and my skin was so sensitive I had to get special facial wash. This is when the torture began. I either couldn’t taste something or it was horrible. I could still taste mushrooms, peas and carrots. Chicken and rice were ‘blank; so I could tolerate them. I had absolutely no saliva so we smothered everything in mushroom or alfredo sauce which didn’t bother me. Since the loss was somewhat gradual, I was tasting things to see what worked. This was awful. I was afraid of food, most times when tying something I would run to the trash to split it out. So I ate chicken, mushroom, peas and carrots pretty much every day. I had an Ensure every afternoon and evening to make up some for what I was not getting. About half way though the treatments I fantasized about quitting. After all, no one could really make me do this. I talked myself out of it. I was half way, only a few more weeks and it would be over. At least that’s what I thought. They told me I would be done losing my hair after about a week and that my taste would come back. It is now 21/2 months after treatment. My taste is better, but I have been through the ringer and am not done. Near the end of treatment my taste changed. It was as if I had swallowed a mouthful of ocean water, all the time. If I ate, it was worse. I had to find different foods that would work with this new problem, more taste tests over the trash can. My saliva had come back so no more mushroom sauce, but the Ensure was now horrible, so the weight started coming off faster and I stared to get weaker ad very discouraged. The salt-water taste lasted maybe a month, then changed to a spoiled meat taste. I could eat a few more things, but still not the Ensure. At about 6 weeks out I started to make some breakthroughs in the taste problem. First came red meat. A hamburger, a steak, unbelievable! Eventually tomato sauce, a pizza, spaghetti, amazing! I still cannot eat mayonnaise some bread, fruit and sweets unless they are seriously chocolate. There is still a spoiled taste or aftertaste to many things that I do eat. I still want to cry some times about it. I made an appointment to see a low vision specialist a week after treatment. It was the beginning of getting some vision equipment from the state that was going to make things much easier for me visually. I was very optimistic after what I was going through. I went to see the doctor full of expectations, maybe he would have some sunglasses or something that would make driving easier. Instead, I was told that I was now legally blind and could not drive any more and that there was nothing that he could do about it. It was like being kicked while you are down. Here I am afraid of food, weak and depressed and you’re telling me that I cannot drive even the 5 minutes to the gallery any more. We went home called my daughter and gave her my car arranging for her to drive me to work each day. So now I am feeling like a child, needing permission to go anywhere. I can’t just decide to go to the bank on my way to work or to pick something up at the grocery store. So here I am, deaf in one ear, constant noise from that ear (I did eventually reduce the dosage because the bloating was to uncomfortable, this made the ringing louder than it had been, but I am coping with it somewhat now.), legally blind (absolutely stupid for someone with my level of vision, but I can’t pass the eye test) Half a head of hair missing and still falling out. My skin is back to normal but I still have no ear wax and still wake up several times a night needing a drink for a dry throat. Able to eat, but not everything and to be honest nothing is without some amount of tainting. I am tired, physically and emotionally worn out. We are also having to fight hospital bills that were billed wrong so the insurance isn’t paying. Like I need that! I don’t know how this saga will end. I don’t even know why I wrote it. I’d really rather not think about it. If I don’t look, maybe it won’t be there. I don’t know. I know that God is for me, that He loves me, that He wants the best for me. I also know that I am living in a fallen world and some of my troubles will be with me until I leave it. :In this world you will have trouble, but I give you my peace: OK, I guess I’ve got the trouble part down, now I will work on the peace. Appendix 1 I am now 4 ½ months out of treatment. My hair recently stopped falling out as much. I’m still shocked that I have anything left. Most things taste good not just OK. It is possible to enjoy food. I have even over eaten twice. Something I would never have done before, it was hard enough to just get it down. I am still waiting for fruit, cinnamon and wheat bread. The hospital bills have still not been fixed, requiring a weekly phone call to stoke the fire. The throat dryness is getting better, but like everything else, slowly. I do not feel so worn out either physically or emotionally. I could be better, but I am happy to be where I am since I thought I would never reach itix 2 Appendix 2 At just about a year from loss of taste, I was able to start eating fruit again. Over the next couple of months, all was back and the tastes I had were improved. I thought I had gotten it all back before, but now things, like chocolate, taste really good. The medical bills were finally squared away, though I am battling with the doctors over how often to have follow up mri’s since they cost me $1500. The dry mouth is completely gone. I am, so to speak, back to normal. I have a crazy short patch of curly hair where what had fallen out is growing back, but it is underneath the rest of my hair so not too much trouble. The noise in my ear/ head is starting to bother me more lately, short of God’s touch, this saga is not going to end. Mostly I am happy to eat like a normal human and am even having to watch how much since I have started putting on a little weight. My vision loss is now taking a priority, so things on this end must be doing OK.