Hello Everyone!

Yes, I'm still here, as is Lori. I'm gonna try to do my best to get everyone caught up.

Let's start with a quick snap-shot of what's going on now. Lori's doing about the same as in the last post. We have really learned to live with her conditions and have made many lifestyle adjustments to get the most out of Lori's up time. She has been having the same leg/hip/back pains she had last winter. We may need to get another series of epidurals soon to treat it.


I last posted we had our 1st appointment with the new Rheumatologist. Our subsequent visits were OK as well, but we did find out he was way off base with his thinking he could treat Lori's POTS. He recommended we see an electrophysiologist (a cardiologist who has specialized training in the heart's electrical system, specializing in treating heart rhythm problems). The Cardiologist he recommended was in the same practice as our cardiologist (Dr. Kuo). Long story short, we saw both cardiologists and the both agree that the procedure the Rheumy wanted Lori to have would not help treat her condition. They both also agreed that, other than what we already doing, there isn't really anything we can do to treat Lori's condition.

This was a let down to say the least, but it was not unexpected. While we were hopeful when we heard there might be something that could be done to treat Lori's POTS, deep down we both knew, based on our previous experiences, research, and Dr visits, that the odds were very slim. The hope was nice while it lasted.


Lori is still waiting to be approved for disability by the State of Florida. It has been over 2 years now. It is asbolutely amazing how long it is taking. Dr Peditto (our primary care doc) decided to write a letter to the Lawyer to use in Lori's case. It was a very good but brief letter getting right to the point and basically saying Lori can't do anything. In our latest contact with the lawyer (just this past week) we were told we should have the next answer within the next two months. The lawyer was hopeful that the answer we receive will be an approval, but certainly could not guarantee it. He said "some of these judges simply want to see each and every person they make a decision on face to face" That would mean more waiting for a court date. I thought that is what we were waiting for now, found out this is not true. We were waiting for a judge to review the case, which is not the same thing. Perhaps we'll get some good news as we begin the new year.


We had quite a group for Thanksgiving this year. 24 people. The boys and I did all the clean up/set up (as usual). My brother Tim and his crew came in the day before to help with the food prep. My uncle Jim took care of cooking most of the side dishes. Once again Lori was able to sit and let others do everything, so she can get through the festivities. This was hard for her at first. Entertaining without doing anything is hard for someone like Lori. It didn't take too many times (as previous posts will show) for Lori to see that the only way for her to enjoy the party/get together would be to let others do the majority of the work. I'm happy to report that we were able to go out to breakfast and shopping the day after Thanksgiving. The whole week after she didn't do much and rested a lot, but she made it through Thanksgiving week without getting herself sick.


We're now planning our Christmas. We are planning to go to my brothers house again (just like last year). Hopefully Lori will feel up to the trip. As I said earlier, she has been having some pain in her leg again. The car ride may be too much for her. We'll see. We're also planning a couple of trips to Disney in the next couple of weeks. I'll post more about that very soon.


We no longer have the insurance policy we've had for many years. We are still trying to get all of the paperwork filled out for the new policy. The policy took effect 4 days before our other one ended. No lapse whatsoever. For us that's a very good thing. Now we'll have to see if the insurance itself is as good as Aetna was. One real good thing is all of Lori's current doctors are listed as providers. The whole insurance ending/new insurance beginning/disability-Medicare situation has really been stressful for Lori. Without insurance we... well, you know.


Lori's Mom is doing good. She and Lori have really become close this year. They talk every day and try to get together at least every other week, if not more. It is sometimes hard since both have to be having good days in order to make it happen. The boys are doing great. They are as helpful as ever with taking care of Lori and helping with the house "stuff" (cooking, cleaning, shopping, etc.) while I work. I've been working a whole bunch. For almost 4 months I was keeping up with 2 full time jobs. 80+ hours a week (all from home thankfully). I was working as a cottage employee for a contractor in Detroit. It had it's ups and it's downs. That has ended. I have decided to try to expand my own business and not work for anyone else for a while.

Based on the web stats I get from this site I do see people still visit here, even though I haven't posted in quite some time (the 80+ hours a week did have a bit to do with that). To those of you who look here for updates on Lori's condition I apologize for taking so long between updates. Please feel free to contact me if you want to know something and I haven't posted in a while. You can send me an email (go to my profile for the address) or you can just post a reply to one of these posts and I will get an email letting me know someone has replied. Thank you to all of you who do visit. It means a lot to both Lori and I.