Showing posts with label Postural Orthostatic Tachycardia Syndrome. Show all posts
Showing posts with label Postural Orthostatic Tachycardia Syndrome. Show all posts

Wednesday, July 9, 2014

Brian's Health - A Personal Note

My husband, Brian, and I.

To whom reads this, let me explain. This is a letter that I have just written up for MetLife, an insurance company that provides long term disability benefits. This letter is about my husband who has been in and out of work since March of 2011 when his symptoms started and has been out of work completely since March 30th, 2013. MetLife denied our claim for long term disability benefits and this is part of the appeal. This is fairly personal information, but I feel the need to share it with you all.


The past 2 years have been very difficult for Brian, my husband. Since I am his wife I see him every day on a regular basis and because of this I have a better understanding of what he is going through than the physicians that have only seen him a handful of times for short durations. While I am not a medically qualified professional to make a formal diagnosis or recommend treatment for him I have noticed many things that are outlined here.

I have noticed a significant deterioration of cognitive ability. Before this time he was extremely motivated and physically got a lot done. Now he struggles with even small tasks. Things on his to do list seem to take him more than quadruple the amount of time to get done these days. I have noticed that when he gets up from sitting or reclining his awareness or consciousness seems to be reduced. He has a diminished capacity of thinking straight, moving correctly, and remembering stuff while standing. Sometimes when the condition is really bad he ambles around like he is drunk. He also has trouble maintaining equilibrium and homeostasis while bending over or changing position suddenly. This also makes him dizzy, lightheaded, and have trouble cognitively. It is very hard for him to function well this way and he gets very frustrated because he can't think as well as he should be able to or as well as he used to. It is also very hard for me to see him like this. Some days are better than others and we have not figured out why this is.

We have been searching for answers to many questions as to why this is happening and what it might be. Brian has researched extensively to try to find an underlying cause and possible cure. He has encountered many overlapping conditions that his symptoms seem to point to. Most recently this research has lead him to get a referral for OHSU Rheumatology. They requested labs to be taken before they saw him and in the process 2 of the 4 lab results came back with abnormal findings which may be suggestive of a possible root cause. One was a low Vitamin D level and the other was a low level of a certain protein. OHSU Rheumatology is currently reviewing these results and will be getting back to us with a scheduled appointment for Brian and possibly more tests.

In 2011 he was prescribed a drug called Adderall to improve his ability to focus which helped with his brain fog. Unfortunately it also had a very unpleasant adverse effect of aggravating Tourettes and it didn't completely get rid of the light-headedness. Before taking this drug Brian's Tourettes were unnoticeable and now even the littlest things set him off with uncontrollable vocalizations. For example: he sometimes yells really loud or says moo or toaster, etc. Even though he got off the drug, after noticing the Tourettes getting worse, the Tourettes haven't gotten any better. He describes it as having an unwanted, heightened Spidey sense. Different things set him off, some examples are: irritating smells, somebody getting hurt or having the possibility of getting hurt, or any human sound in a high register.

On March 30th, 2013 Brian had an accident at home while trying to put a fence post in. He blacked out. The next thing he knew was that the heavy fence post pounder had dropped on his head and his head was bleeding. It was at that point that Brian decided that he couldn't go back to work at his job at the time as a plant equipment operator for Beaver Plant and PGE. He realized then and there that working around charged electrical equipment, on high scaffolding and ladders, and rotating machinery could become very dangerous and possibly life threatening if he blacked out again. He didn't want his or other lives put in jeopardy because of his condition.

My 4 children and I have been having a hard time adjusting and seeing Brian go through this. It has been difficult on all of us and very life changing. The Tourettes are a bit of a nuisance. We have had to shorten, postpone, or cancel many family outings and work around how well he feels at the time. There are times when he has felt like he needed to sit the events out because he just didn't feel like he could walk around without feeling the ill effects of light-headedness and brain fog. We all would really love to find some answers and get to the bottom of all this so that we can hopefully get back to some kind of normalcy. Since Brian became out of work we had to move out of the house we were previously in and into the one we are in currently because we did not have enough money to pay for it. We have been struggling everyday to make ends meet and meet the needs of our family of 6. This has not been very easy for any of us.

Would you please re-review the case file as well as any additional information we have provided to you. We hope the previous denial was simply due to an oversight. We look forward to having Brian's long term disability reinstated. If you have any additional questions please feel free to contact me and I will be happy to provide answers to your questions and additional details to the best of my knowledge. Thank you.

Crystal Abel

Monday, February 11, 2013

Snuggly Toes Review

Snuggly Toes are feet warmers made from all natural alpaca fibers that are first spun into yarn, knit into a "blanket," then felted into fabric. Each "blanket" is felted 3 times to make Snuggly Toes very durable. Just slide them into a boot, shoe or slipper and the alpaca fibers make a soft cushion under your feet, wick away moisture and keep the bottom of your feet nice and toasty warm. Alpaca fibers are naturally warmer than wool. Snuggly Toes are made in the USA at Springtime Farms right here in Oregon. They are also machine washable on cold and should be air dried. They are also free of dyes, pesticides and bleach.

My husband was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) last year. What that basically means is that his autonomic nervous system doesn't function properly and because of this he has problems standing for long periods of time and has to sit/lay down or he: has an abnormally large increase in heart rate (called tachycardia) and a decrease in cerebral blood flow which causes dizziness and trouble thinking. It is very hard for him to maintain homeostasis when changing position. He also gets extremely cold extremities because of the POTS so I decided my husband could benefit more from these than I, so I got a pair of size men's 12 for him to try out. His boots that he inserted them into are a size 13 wide and they fit wonderfully.

He told me that the Snuggly Toes kept the bottoms of his feet snug and toasty warm. He loved how perfect they fit in his boots and that they were comfortable to walk on. He said it was like walking on a thermal cloud. We did notice that some of the alpaca fiber got stuck to the bottom of his socks when ever he pulled his feet out of his boots but that was to be expected. We are very happy with Snuggly Toes and how well they worked.

Snuggly Toes are wonderful for people that generally have cold feet or need some extra thermal protection from brisk autumn air to cold winters. They are perfect to use in your boots or shoes out in the freezing snow or rain. They are also fabulous for use with a pair of slippers inside the home. Great for snow boots, hiking boots, wellies, tennis shoes, slippers, Crocs, etc. No more Jack Frost nipping at your toes :)

BUY IT
For $39.95 you can purchase a pair for women or men. For $14.95 you can get them in kids sizes. You can also find other products for purchase on the Snuggly Toes website like alpaca: pet beds, yarn, roving, fawn fiber, bedding, hats, magnets, and wreath and bird nest materials.

DISCLOSURE/DISCLAIMER: I received product to facilitate my review. My thoughts are mine and my family's own opinion and have not been altered by anyone else. I did not receive any other compensation for doing this review.