This month began with my HumanWare Apex crashing. For those who do not know what an Apex is, it’s a small note taking device, very similar to a laptop, but it has no screen, but does have a refreshable braille display at the bottom. When this device works this is my pen and paper. When in school I would use it to take notes. This device also has the capabilities to email, chat, surf the internet, read books, be used as an calculator, and so much more. The most important to me is the braille display. As a deafblind person I use this one feature probably more than anything else. I can’t exactly remember if I mentioned this in previous entries, but in late August my Apex crashed for the first time. The unit went back to Humanware and they repaired it. I had been trying to install a new software version so that I would have the ability to use my Apex Bluetooth to my IPhone and thus use the braille display to read things in braille from my IPhone. Well in that process of upgrading the Apex crashed. It of course wasn’t supposed to crash, but it did. The wonderful thing was that I did not pay for any of the repairs, only because I threw a small fit. So I got back the Apex in mid-September. I used the Apex for a few hours in the middle of the month; I let the unit sit in my backpack, and forgot to charge the battery. Bad Idea! So I turned on the device after charging it for a day or so, nothing happened. I tried all the normal reset things, still nothing. So by this time I was not happy, starting to have a meltdown. I knew that it would ultimately have to be sent back. I let the unit sit, thinking perhaps it would fix it self, very positive thinking. Letting it sit did nothing. I asked my hubby to finally call Humanware on September 30th. Humanware’s customer services offices are in Canada, so many of the folks that work there are French Canadians. For me this means that I can barely understand them. After the customer service rep, walked my hubby through a few more steps, they finally admitedt this is a known problem with that version of Keysoft. Keysoft is the software that runs on the Apex. So they scheduled for UPS to come and pick it up, on October 1st. Again Humanware was not going to make me pay for the repair; both times the unit crashed it was not my fault. The first, I followed the instructions given by one of the customer service reps to the T. the second, was more of a hardware issue. I am not completely impressed with Humanware products. In this case if, the unit had needed to repaired, and we would have had to pay for it, it would have come out of our finances. And in fact I am still paying for the loan that helped me purchase this device. In three months I have required 2 repairs.

On October 4th, hubby and I both had appointments with our endocrinologist. He sees us about every six months, a very well respected doctor in our area, one of those doctors who actually takes his time seeing and talking to you. Unfortunately hubby’s thyroid levels are not well, so there was some adjustment to his medications. All of my blood work was good. On the other hand, one of my concerns was that I had been having some very strange symptoms. For example muscle spasms, fevers, digestive issues, heartburn, weakness, fatigue, achy and so on. He suggested that I see a GI doctor. The good part is that the doctor gave hubby samples so we did not have to wait for our mail order pharmacy to receive the script, to go through all of its paperwork, and then send it to us. I think in total it might take like 2 or 3 months to do all of that, maybe that is an exaggeration.

Sunday October 6th, I was once again in the nursery for church. It seems every time I am in nursery, either hubby is playing in the worship team, or there is communion. On this particular Sunday there 4 ladies scheduled. We had a total of 5 babies, and ended up pulling in someone for the extra hands mid-way through the service. Several of the babies slept, and I still have my magic touch in getting them to sleep. The hard part about nursery is now becoming that I can’t hear others in the room speaking to me. The nursery coordinators have offered to help in any way possible in that regard, but it so awkward nevertheless. Some of the ladies know that I can’t hear well, others do not. But still I struggle to express that I didn’t hear them or that they need to repeat something. What am I scared of? Why can’t I tell these ladies, when they are my friends too? If there is one baby crying, my ability to hear decreases, if there is more than one, there is no way. I am not afraid of anything happening to any of the babies that are left in my care. But usually when we are in there, the ladies or workers talk about life. If one of the babies is down playing with a toy, making a noise, I can’t hear someone talking to me. Then I miss out on what is happening with the other ladies.

After church we had a picnic with my BIL and his girlfriend, and all 5 of their kids. It was a beautiful day, even though it sort of felt like it was going to rain. The kids played for much of the time on the playground. It’s nice because this park and playground are right across the street from our house. Of course because the picnic was outside, and we were right next to a street, I had a hard time hearing. Hubby automatically repeats things for me. I’m very appreciative of that, but I wish he didn’t have to do that either. It’s also funny how some people are very good at remembering that they need to come closer, or speak directly to me, or speak clearer. Some people do this right away, but others do not, and continue to talk in very quiet voices. They do this no matter how much they are told to speak up. Others make such a great effort, it’s very much appreciated. I think it was a few weekends ago, I took out my hearing aids out, and showed the family hubby and I signing. I of course could not hear them, and hubby told them what we were saying, but maybe this really helped them see that they do need to speak up, clearer, or direct there voice at me. At least that is what I tell myself, of why they are making such an effort.

I don’t usually write about how hard things are for me in regards to my hearing. I don’t usually complain about my hearing. But to be frank, sometimes situations just suck. I either can’t get over my own issues, or people act in ways I can’t control. It would be great if technology wasn’t such a pain in the bum. I do wish that I could go back to a normally hearing person, or that people didn’t have to repeat to me, or that I could express my needs to people.

As I mentioned I have been having major digestive issues, I won’t go into the gory details. But I did call and make an appointment with the GI doctor. My appointment was on Wednesday October 9th. I schedule it so that hubby could come, and my SIL drove. On that morning it was very early that we got up. Even though the appointment was only a 10 minute drive, I had never seen this doctor, or gone to this practice. My SIL helped fill out all of the necessary paperwork; otherwise we would have had to have one of the office personal help us. I saw the PA, Kristen. The heartburn issue was solved fairly quickly with a prescription for an antacid medication. The other digestive issues not so easy. The PA was very concerned about how long this particular problem has been going on, 2 years. I am the type of person that unless I am in alot of pain, on my death bed, and severely sick, I do not go to the doctor until it gets super bad. But because of the concern, the PA wanted to schedule a procedure as soon as possible. GREAT, NOT! So we went out to the scheduler, and the quickest they could schedule me is for Monday October 14th. Oh WooHoo! We received an entire tree of paperwork on the procedure and things to do before hand, what not to eat, what I could do and so on. There were some just very initial test done in the office and we went on our way.

Of course for this procedure, they want for me to take out my hearing aids. Like they need to look in my ears. Not really. Of course this presents an issue. If I take my hearing aids out, I can’t hear. They could mistake my not hearing for other medical problems. While scheduling the procedure, the doctor’s office called the testing center. They said that yes I would have to remove my aids. Uh, ok..I did some asking around of others on Deafblind listservs. I was told that I could legally get an interpreter. That I would not really have to take my aids out. That it’s a part of the ADA that they accommodate me. The next day, October 10th, hubby called again. And they assured him that they would do whatever I felt most comfortable with, that they did not have enough time to hire an interpreter, and that my hubby could act as my interpreter. I guess we will see, I am nervous. Yes I know it is sort of dangerous to have my hubby as my interpreter for a medical procedure, but I do feel most comfortable with this arrangement. He and I know the signs, and how to use them tactually. If I were to get an interpreter, I would have to explain that I know simple signs, or could use finger spelling. It’s one of those procedures that are in a very very personal way. Again I won’t write about gory details. I can honestly say, at this point, I have been suffering for so long with this issue, I am about ready to do anything that finds out why and what is causing the issue.

I also have to start reducing my diet, several days in advance. I start with not being able to have nuts, corn, seeds, berries, or whole grains. Great that really reduces almost everything I eat. Then Sunday I will go to a liquid diet only. I also have to drink some sort of solution that apparently I have been told tastes gross. My procedure is on Monday October 14th, at 2pm.

In my next post I will also describe more about the few days following up to the procedure and about the Tactual Carnival on October 12th..Guess this means you will have to come back and read more. Stay tuned!