Surgery Update 2

Things are going great! Here is a picture of my foot when they took off the cast.

Here it is now...

So things are doing well. I'm really grateful. :)

Remus

I can't believe it's been a year-and-a-half since I picked up Remus from the vet's office. The cat now known as Remus was a stray that had been hit by a car in Surry and brought to the local vet. He was in really big trouble and is lucky to be alive. Most cats who are hit by a car do not live to tell the tale. He is especially lucky that somebody noticed and stopped as the car that hit him did not. It was the car behind the car who hit him who stopped to help him. Instead of letting him go to the shelter to attempt to recover and be adopted he came to my house.

He has grown and healed over the last year or so. He is relatively healthy and happy now and gets along with all the other cats in the household. He likes to rest and play with a cat laser and loves catnip as well. He has problems with weight now as his metabolism isn't great from the accident. But he loves to snuggle and he stays very close to me when he can. I am also thankful for the few people who donated money to help with his vet bills when he was originally in need. Between a Good Samaritan fund and those donations from a Go Fund Me post I paid very little of his vet bills during this time. Those costs included his neuter and vaccinations and a tail amputation.

I am a lucky woman to have him in my life and I am grateful that I took the opportunity to say yes and bring him home.

Catch Up

Whew! Sometimes life just sneaks up on you. I feel like I will be coasting along pretty well for a bit and then the world tips slightly and everything slides to the side and falls down. Then I end up spending way too much time trying to pick everything back up and level up my life again. IT doesn't necessarily mean that everything is bad, just a jumble of positive and negative tumbled together that needs to be carefully winnowed out and restored to its appropriate place in my life. These times are hard but something I try to be thankful for. After all, these times help define our goals and then our lives. You never learn as much as you do when you are trying to evaluate what is important and necessary and what must be laid aside... no matter how important it still feels to you. The Buddhist principle of impermanence is a wonderful thing to learn even if it isn't a principle that is the slightest bit easy or comfortable... at least its not for me.

Overall, things are going OK. Finances are still pretty shaky and I am not fully stable as I would like to be in that regard. However, I have plenty to eat and my insurance is covering the majority of my medical bills- I can't fathom what I would do without insurance with my health problems. Just this month alone I have six appointment and 2 MRIs. My monthly doctor's visits would put me into bankruptcy if I didn't have insurance. Having Ehler's Danlos can be a bit of a trial sometimes and having insurance really is critical fro a decent quality of life. I am very grateful that I do have health insurance and wish that this country could get it together and provide single payer healthcare. No one should have to go without healthcare due to expense.

I am back to wearing a brace on my left ankle as it doesn't want to stay fully in its socket. The brace is controlling it well so I tend to have moments that I forget I am dealing with that problem. I have learned not to sit on it or to sit indian style- those are errors I will pay for fairly quickly both in inappropriate joint movement and pain. I also am trying to learn to pivot more slowly instead of quick turning 'jolts' to change direction.

MY car has been fixed and for the moment the fuzzy parts of the household are healthy. Watson passed away last weekend and that has been a sad experience- I still feel like I can see him lope along in my peripheral vision when I am moving throughout the house. However, everyone that was very ill has passed on at this point and I am hopeful for a period of time of good health for me and my fuzzy companions.

Sleep has improved a bit which is helpful. I would definitely prefer better sleep every day- the nightmares are not helpful most nights. However, they are improving or at least I'm having fewer of them... that's progress! Sometimes when I wake up from a nightmare, I hear the lyrics of a BareNaked Ladies song in my head:

I wake up scared. I wake up strange. Its the hair shirt I wear. This hair shirt is woven from your brown hair. This song is the cross that I bear... bear with me... bear with me... - "What a Good Boy"

Strange lyrics for strange dreams I guess...

I hate when I get so busy that I do not write. I really like writing. I should do it more.

Sadness, Confusion, and Ice Cream for Breakfast

I have been feeling tired and worn down lately. Health problems and other issues have distracted me from many important things and blogging has fallen to the wayside during this time. I am going to try and do better with it, but I will admit I don't feel much enthusiasm about anything these days. I really wish that I didn't feel this way because I love to write. So I will endeavor to do better.

My grandfather passed away one year ago today. I feel a lot of conflicting emotions about it and it is still a tender spot. It feels so close in time to now that even my ex couldn't really comprehend this morning that it has been a full year- he was quite sure this event had happened more recently. So today has been filled with family, work, and dessert to help make the day more cheerful.

These pictures are a few days old, but I thought they would be fun to share today for a smile. Bug loves ice cream and his favorite currently is a cotton candy flavor- its blue and looks horrible but he is addicted. I was cooking breakfast the other day and he went and got a spoon out of the drawer and the ice cream from the freezer and sat down to eat it. When I noticed, I laughed and grabbed the phone to take a picture. Bug hates pictures so he immediately got up and tried to leave, but I still caught some of him in the picture.

The funny part is the spoon he was using. This picture gives a clearer view of the spoon he was using... which is supposed to be used to stir cocoa in mugs.

Happy Friday and love to all. :)

Busy Time

The last month or so has been very busy for me. On top of my usual responsibilities and life changes, one of my co-workers has been out with surgery and recovery time and I have been trying to take her place. I have known for a while that working full-time for me- at least in the jobs that I've had over the last few years - is no longer physically possible for me for long periods of time. This was a great experiment as I was able to sort of see how long I could work full time before my body complains too loudly. I discovered that I can't work too much without having significant health issues. I am very grateful that my coworker is back and my hours have been cut back down. As much as I need the money... I definitely don't need the physical pain that I was getting.

Since I've been so busy with work I really haven't accomplished very much else. I have some genealogy that I've been trying to work on and I have been very slow at accomplishing it. I've looked at a few online sources for doing college classes that I can get for free- I would like to take more classes but I'm not sure I want to go on to a graduate degree- and I haven't spent any time following up on those either. I've done the bare minimum on my housework and I'm grateful to have some time off to try to make my house cleaned up and enjoyable again.

I have quite a lot to be grateful for. I'm so thankful and thrilled to be able to spend some time with Katey this weekend. I'm grateful for the time to work on getting my body back to a more stable condition. I've had some time to catch up on housework and I have a fridge full of fresh food. I recently had some flooding in my house and I am fully caught up in getting that picked up, cleaned up, and getting everything back to normal. I have most of my garden pots and beds set up for the season and filled with dirt and compost... I'm almost ready to add seedlings. I have happy feline companions and the mice are hanging in there as well. I've had time to read some books and catch up on paperwork. I'm able to end this day resting on my couch enjoying a few episodes of "Red Dwarf." I have a cup of cinnamon tea and dried bananas to snack on. In essence, I have been better, but I'm doing well. I have a few BLS classes over the next few days, a day at the pharmacy, and family time this week. This is a week to rest in spare moments and get ready to get back to my normal priorities and work load next week. So I'll rest up and get ready for what the future holds. Let's see what happens next.

Today

I have a lot on my mind today. I had a wonderful day with Brock and some great food. I'm so grateful for the time that I have to spend with family and I loved listening to Brock tell me about the things that interest him. My heart is full of so many things and I don't know how to articulate very many of them nor should I share all of them. What I wouldn't give for a pensieve some days... to just siphon off the extra thoughts and emotions and to be able to look for the patterns and the understanding in them and I'm more detached and unbiased manner. I bet all of us could use that every once in awhile.

I had got to spend a little bit of time today going through paperwork and old school assignments and over the next few months I'm going to post a lot of that stuff here. Some of it is very scholarly stuff such as history essays, lesson plans, etc... some of it is thoughts on assignments and things that I read for classes... and some of it is just research and other information that I think I'd like to keep for future use and perusal. So this is your warning that I'm going to start posting a bunch of mismatched sort of stuff in the next few weeks. I really have taken so many varied classes over the years....

I got as much rest as I could today and I'm looking forward to work tomorrow. Here's to a peaceful evening with a few episodes of Mrs Brown's Boys.

Forced Rest

I'm a bit tired and wrung out today... a bone deep exhaustion that I am struggling to deal with. I need to rest this weekend so that I have the strength to work all next week and even the thought of moving my body right now seems so painful that I have been sitting and reading or watching films for the majority of the afternoon... except when I have napped. I worry that I am letting my friends and my co-workers down with my inability to continue to push myself in ways that I could in the past, but am unable to do now for long periods of time. I feel like I'm letting myself down too. This problem is something that I think I am going to learn to accept

it and stop being so hard on myself for it. I am trying to look at the positive side of the health problem; I have been able to take the time to read and watch some movies which I rarely have taken time to do in years. Some of the films that I have watched recently I have held onto for years to watch when I had the time. I am slowly winnowing through those piles of films including the massive collection that my Uncle Rick gave me years ago in a large stack. Because of that gift, I am enjoying films that I would never have gone out of my way to see if he hadn't given them to me. (Don't get me wrong- there are some serious duds in the collection, but I have found a few gems. And this package used to be full to the top... it was an amazing gift.)

So today and tomorrow I will rest and see what energy I can pull up out of the recesses of my muscles for the week and what will be will be. I am grateful for the day of rest that I have and a day to spend with family.

Zombie Debt

There are many different ways to discuss and label debt- student, credit, medical, etc... One form of debt that isn't talked about much is Zombie debt. I ended up spending a few hours on the phone today between hospitals and insurances and have found myself the new and proud owner of medical debt... from 2015. So two months ago it didn't exist... and now it does. It certainly messes with your budget to have to reconfigure how you spend money based on information that you couldn't have had when you made it. Learning that more of these unknown expenses are probably headed my way as my health insurance *still* hasn't paid on these bills for the last two years doesn't really feel great. And while I thought about it and what choices I need to make, I thought about the term 'zombie debt' and how I originally had heard it. So here is a clip to the show "Last Week Tonight" discussing medical debt and debt buying organizations.

https://www.youtube.com/watch?v=hxUAntt1z2c

Paying off my 'new' medical debt won't be fun, but it could certainly be worse. I could have the experience of many of the people mentioned in this episode. I guess it might be a valuable thing for everyone to remember- even if you have insurance and they should pay the bill.... if they don't, you are still on the hook. There are no exceptions. Medical debt also is treated as bad debt by credit reporting companies even though people can not help becoming sick in the vast majority of cases. I wish I had fewer health problems and I confess... even though I have insurance now (and had at the time of my 'new' debt) my gut reaction is to stop going to the doctor because I have no idea if in two years I will have to pay for the visit, procedure, etc... I dearly hope for single payer/ universal healthcare for the next generation. It is needed for so many reasons.

Sigh... maybe someday.

One Week In....

Well, I have been without an official job for about a week and I am so glad to say that many aspects of my health are starting to improve, but also a little annoyed that I haven't accomplished more in the time that I have had. Granted, I have accomplished alot including some cover letters, an unpaid internship for class, house cleaning, CBT's for re-certifications, a math exam, etc... it just doesn't feel like enough actually. So I think I need to accept that as long as I am trying I am really doing OK. Maybe, all of us need to recognize that we are doing the best we can and cut ourselves some slack... and just pet some kitties. Food for thought. :)

Good Thoughts

I've been struggling a bit for the last few days. I have stopped taking some of my abdominal medications and it is pretty amazing to me exactly how much the meds were helping. I had managed to take them for so long that I didn't really remember how much abdominal pain and nausea I tended to live with and now it is back... and wow, I don't like it much. That said I have so much good going on right now so I thought I would count some of my blessings so to speak. :)

1. It's school vacation and I am caught up in all my classes with all of them graded except for one; I got all A's and B's so I can't whine about that. One of the classes was a math class and it is the first time in my life that I have passed an Algebra class! For full disclosure, I had lots of help. I was tutored, used three different texts from outside of class as well as a Teaching Company/ Great Courses class and three smartphone algebra game apps. Not to mention friends and sometimes spending as much as two hours on one question. But I passed- one more math class and my degree will pretty much be mine- all my requirements will be completed. I'm getting there!

2. I am doing pretty well with not biting my nails. I've tried to stop a few times in my life and I am at the crucial point where the nails are long enough they are starting to break. This is where I usually break down and start biting them, but I have been doing well and trying to cut and file them instead.


3. I have a wonderful household of animal companions that keep me company, give me love and affection and even make me laugh. While I probably have too many, like children... I don't know who I would live without if I needed too. So, like family, they stay and I wouldn't have it any other way.

4. I have a fun home and I am warm in this pretty cold and icy weather. I have a few close friends that I adore and who genuinely care for me and while work is a challenge, I have a few co-workers that I really love and can't imagine my life without which is an amazing blessing as well. I have food and water... and even a little ice cream. :D

5. I spend a great deal of my free time with Bug or in service to others which is a gift and helps keep me busy as well.

6. Even though I do have some health complaints, I am doing pretty well. I wish that taking care of myself was easier, but it could be much worse and having a safe place with companions to recover in means the world.

7. I was recently able to visit with some family and that is a gift that I cherish everyday.

8. I live in Maine- it is so beautiful here. I love being rural and being able to have a little space of my own. Being able to not feel super crowded is precious.

9. I love reading and currently have many new books to choose from. I am taking advantage of my vacation to do some fun reading and I have pretty much finished every Nero Wolfe book I got! On to Hamish Macbeth!

10. Who can't smile with silly ferrets around :)

What do you have to be grateful for today?

Today...

Things are going pretty well for me right now. I am so much to be grateful for and I love having the last few days of some rest with family. Bug is so tall and I enjoy spending my weekends with him laughing, cooking and just enjoying him grow. I'm looking forward... hoping for a much better year than the last for me and for so many others. Let's see what's in store for all of us. :)

Introduction to my Intersections Praxis Project

The next few days, I will be putting up two pretty large posts so I thought I would introduce them here. Last semester I took an Intersections class and we were able to make a choice as to a large and convoluted semester project. I am afraid I sent quite a bit of the semester trying to figure out a project and then came across my project idea from a comment at work and some contemplation. The project I chose was to try and develop as comprehensive a list as I could of LGBTQI resources in the state of Maine from emergency services to longer term mental health and medical services. The first post will discuss how I came up with the idea and how it became a reality and the next post will be the full list that I came up with and turned in for a grade. This list is accurate as of May 2016 and while it is missing a lot- due to lack of time or imagination, I wanted to share it here to make sure it is accessible (hopefully) if someone needs it. If you are reading this and want to add or change a resource, please feel free to let me know. :)

Bloodborne Pathogens Answer Key

Here are the answers I promised for the test I posted yesterday. I have also included some page numbers in the manual for those who are so inclined and have a manual. :)

1. A - (p. 4)

2. A - (p. 5 (6)

3. C - (p. 5)

4. B - (p. 4, 5)

5. C - (p. 4)

6. A - (p. 7)

7. D - (p. 8-9)

8. A - (p. 16-17)

9. B - (p. 9-10)

10. D - (p. 4)

11. D - (p. 9)

12. C - (p. 11)

13. A - (p. 5)

14. D

15. B - (p. 9-10)

16. D

17. B

18. C

19. D

20. B - (p. 5)

21. B - (p. 5)

22. D - (p. 9-10)

23. C - (p. 3, 11)

24. D

25. B - (p. 5)

pictures from: http://gotpulse.com/Bloodborne-Pathogen-Training.html

Bloodborne Pathogens Course Practice Test

As a Basic Life Support Instructor, I sometimes take the time to create practice tests for students to see how well the information has been maintained. The American Heart Association doesn't always have a test for a class and I sometimes have students ask for a pretest to get ideas on what the class covers. I wrote this test a few years ago and thought I would put it here for people to use. I will post the answers for it tomorrow. :)



1. What are Bloodborne Pathogens?
A. Germs in the blood that make people sick
B. Germs in the air that make people sick
C. Germs in all bodily fluids that make people sick
D. Germs in the environment that make people sick

2. Bloodborne pathogens training teaches....
A. How to act if an exposure to a bloodborne pathogen occurs
B. The employee to quickly leave the scene of a blood spill
C. How to clean up a blood spill without personal protective equipment
D. Safe handling of blood without wearing gloves

3. What does the 'P' in PACT stand for?
A. Power
B. Pathogen
C. Protect
D. Pulmonary

4. The main ways bloodborne pathogens can enter the body and make you sick include...
A. Picking up a towel with a small drop of blood while wearing gloves
B. Getting stuck with a sharp object that has blood on it
C. Wearing gloves with blood on them
D. Wearing gloves and picking up a container that has blood inside it

5. Which one of these symptoms is not a symptom of HIV/ AIDS?
A. Swollen glands and unexplained fever
B. Poor appetite with rapid weight loss
C. Manic or strong energy
D. Increased chance of catching other illnesses

6. Universal precautions refers to what?
A. Treating all bodily fluids as if it is infectious.
B. Wearing UV sunglasses outside.
C. Never leaving your house.
D. Protecting yourself against Universal aliens.

7. The purpose of (rubber) gloving up is to what?
A. Provide a sterile environment.
B. Make you look professional.
C. Keep your fingerprints out of the scene.
D. Protect
4
8. What is the best way to dispose of needles and other sharps?
A. After using the sharp, carefully dispose of it into a sharps disposal container
B. After using sharp, throw object directly into nearest trash container
C. Cap the needle and discard into a trash container
D. After using the sharp, carefully dispose of it into a biohazard waste bag

9. Washing Hands and skin after exposure
A. is not always necessary
B. is done with soap and large amounts of water
C. is not necessary if gloves are worn
D. is not necessary if waterless hand sanitizers are available and used

10. Which one of these symptoms is not a symptom of Hepatitis?
A. Nausea, vomiting and abdominal pain
B. Damage to the liver
C. Unexplained tiredness
D. Inflammation and contusions all over the body

11. Personal protective equipment may include all but:
A. goggles and/ or face shields
B. gown, apron, booties or shoe covers
C. cap or hood
D. sunglasses and work gloves

12. Biohazard waste warning labels are usually what color?
A. Black
B. Red
C. Orange
D. Yellow

13. What does the 'C' in PACT stand for?
A. Clean
B. Cardiac
C. Control
D. Content

14. An exposure control plan contains specific details and instructions on how to clean up a mess with blood- containing materials. All of the following usually part of that plan except:
A. Use the appropriate personal protective equipment
B. Dispose of cleaning materials and any personal protective equipment in the appropriate waste containers.
C. use absorbent materials to wipe up large amounts of blood
D. watching your co-workers struggle to clean and taping it all for posterity

15. You have cleaned up a blood spill and have removed your gloves. To protect yourself you should also:
A. Use waterless hand sanitizer
B. Wash hands immediately with soap and large amounts of water
C. Go to the break room for a glass of water and to fill out the necessary paperwork
D. Put the gloves in the closest trash can

16. What are the main diseases of concern when discussing the blood borne pathogen standard?
A. HAV, HDV, HEV.
B. PVC, BVD, HIB.
C. PCP, H2O, CDC
D. HIV, HBV, HCV

17. How many days can Hepatitis C live in dry blood?
A. 1 day
B. 4 days
C. 7 days
D. 14 days

18. What site of the human body is the most common site for TB disease?
A. Brain
B. Kidneys
C. Lungs
D. Liver

19. Hepatitis B and C can be spread by:
A. Having unprotected sex with an infected person.
B. Blood-to-blood contact with an infected person.
C. Eating food or drinking water infected with feces.
D. Both a and b.

20. Which of these is not a common entry point for bloodborne pathogens to enter the body?
A. Eyes and nose
B. Ears
C. Cuts or injuries in skin surface
D. Mouth

21. What does the 'A' in PACT stand for?
A. Assess
B. Act
C. Asphyxiate
D. Action

22. What is the single most effective form of protection for you and others during a bloodborne pathogen exposure?
A. Vaccination
B. Not eating in contaminated areas
C. Clean clothing
D. Hand washing

23. If you are exposed to potentially infectious materials on the job, you may request a vaccine for which bloodborne disease?
A. HIV
B. Syphilis
C. Hepatitis B
D. Brucellosis

24. Bloodborne pathogens may enter your system through:
A. open sores / skin abrasions
B. dermatitis
C. mucous membranes
D. all of the above

25. What does the 'T' in PACT stand for?
A. Talk
B. Tell
C. Touch
D. Time

Feedback and comments are welcome! Enjoy :)

pictures from: http://floridahomeboundfhb.com/Initial_orientation/Bloodborne/bloodb.php, http://www.slideshare.net/glenbrooksouth/blood-borne-pathogen-training

Holiday Letter 2015

For those who didn't get a copy of the Christmas newsletter this year, here it is in all its fun. Send me your address if you want one this next holiday. :)

This year has been a year of much joy. I have so much to be grateful for. During this year, I have gained a good job and found a wonderful place to rent and to stay and plant myself for the next few years. I have developed some new friendships and maintained and strengthened others. I became a nationally certified medical assistant this year and I am within a few semesters of graduating with my bachelor’s degree. My health is improving over time and except for overworking, I feel like I am doing so well. If there is one thing I have discovered this year, it is a tentative stability that I am hopeful to carry into the New Year and I will fight like mad to keep it.

Brock is doing very well. He is healthy and seems genuinely happy with life. His joy in books, love of animals and enthusiasm for food is a wonder to behold. He has fallen into responsibility and adoration of three accidentally homed ferrets and his heart is full of them and the joy of life. Spending time with him fills my mind and heart with a beauty and love I have rarely felt in my life.












I end this year feeling peace and joy and I hope for the same for all of you. Thank you – each of you – for being a part of my life… for being the wonderful people you are… for living as you do. Merry Christmas and a Wonderful New Year to you all. May we all be blessed this next year and bless those around us with our service and love.

Thoughts on HealthyComputing.com….

I think this site would be very useful for people who do not know a lot about computer and body ergonomics and if you are having some problems that you think are based on using your computer, check it out.... :)

I spent forty minutes looking over the site http://www.healthycomputing.com. My first inclination was to not find the site very interesting. I am having some significant health issues right now so the first section I checked out was the ‘Your Health’ section and I didn't find anything that seemed to fit me very well. I looked at all four sections and I copied out the stretches- I think that I have accidentally been doing those stretches pretty often over the last few years, but I thought I would put the copy on my fridge and remind myself about doing them more often. Under 'conditions and treatments' only one thing really was pertinent to me and has been pertinent since I was a wee child and that was myopia with slight astigmatism. I am extremely blind/ near sighted without my glasses and so it was interesting to read that my eyesight could be getting worse due to computer use. I haven’t found that it’s really getting worse over the last several years and I do use the computer a lot, but I know that my near vision should be changing soon simply due to age. When human beings reach their forties, the lens in the eye loses its ability to perform ‘accommodation’ which makes the near vision more challenging or harder to use… hence bifocals or reading glasses. Did I mention I am not looking forward to that?!?!?!

I also looked at 'Causes of Discomfort' but I didn’t see any that I tend to have troubles with over the several sections in it. I’m grateful for that! So I didn’t find this site terrible useful, but only because I have already been fairly well educated in the topic. I am determined to not need carpel tunnel surgery for as long as possible. So to sum up, I found the stretching information very interesting and printed it out for future use, but didn't find much of the rest of the information pertinent to me. :)

How about you?

Do You have Sensory Problems?

I do... have for as long as I can remember. I didn't always understand why some parts of me were different from other people nor do I always understand some of the ways I respond now. Some ways that my body may respond to a stimulus I still do not understand... but I accept it and sometimes laugh about it... and sometimes cry about it... and sometimes I just shake my head and shrug. In the end, my processing challenges are a part of me and make me the unique and wonderful individual that I am. That said, I was in my thirties before I was even heard the term sensory processing disorder / sensory integration disorder and researchers are still trying to understand how these disorders work. I thought that I would take a few minutes to talk about the basic human sensory system and leave you with a small list of questions that you can read and, if interested, can use to look at your own behavior and responses to different stimuli and determine if you too, might have some sensory processing challenges. :)

When I was growing up, I learned about the five senses: touch, taste, sight, hearing and smell. The sense of touch as processed through our skin and taste processed inside of our mouths.... the sense of sight which is processed through our eyes and sound through our ears... and the sense of smell through our nose. And each of these organs sends the information to the brain for final processing so that we can use the information. In the processing the information is organized in the brain so that we can use it to make appropriate responses to external stimuli. For those with disorders of the sensory system, the organized information may not create the correct responses.... the child who reaches toward a snarling cat and is genuinely confused when the cat hurts it... the person in whom fear causes hyperactivity or out of control behavior, etc...

So let's start with some basic questions. Here is how the questions work. Each question should be looked at by thinking of how often you perform the behavior in question. The more often you do it, the more likely it is that your brain is having some difficulty processing the information in a 'neuro-typical way'. Is that a problem? Not necessarily... it really depends on how my your behavior in this regard affects your quality of life.

1. Do you prefer the dark, happily avoid bright light and feel happier in dim light? Do you find that you are bothered by light when others feel comfortable?

2. Is it difficult for you to accurately visualize images or objects in messy or cluttered backgrounds? Do you end up staring at objects overly long to process the information?

3. Do you find it more challenging or impossible to complete tasks with noise or music in the background? Do you find yourself easily distracted by noise or even seek out noise or make sounds simply to have noise around you?

4. Do you avoid noise or sounds? Are you slow to respond to sounds around you that are relevant and important... an inability to recognize what sounds are important and to block out sounds that are not?

5. Do you have difficulty processing really strong smells? An inability to smell odors that the people around you can?

6. Do you find yourself feeling large amounts of anxiety or anger when your expectations or your routine has to change? Do you find yourself doing tasks in inefficient ways because it feels more comfortable to you? Do you move from one activity to another not completing any of them very quickly?

7. Do you prefer to be alone? Prefer quiet activities? Quiet areas and places?

8. Do you have problems with textures in food and limit what you eat based on what the food feels like? Do you crave certain foods due to flavor or strong smells or will you only eat certain foods?

9. Do you have problems with touching or being touched? Do you react emotionally when being touched by people or things such as water, unnatural fabrics, etc.. or do you crave touch and will touch too much and too often?

10. If something touches you such as clothing, are you able to 'forget' the touch.... or do you feel the clothing and its touch all day in part of your mind? Do you go barefoot because shoes feel uncomfortable? Do you fill your hands with things so avoid people touching your hands?

11. Do you seem to have an awareness – or lack of awareness- to pain or temperature that is different from most other people? Can you injure yourself and find that the pain is not at the level that it should be for the injury? Do you feel comfortable in a snowy environment in short sleeves?

I could definitely go on and healthcare providers who try to help their patients with sensory issues will ask many more questions than this.

One challenge that comes with sensory problems is that as someone struggles with them and they find the way they respond is so different from other people, it affects the individual's emotional well being. People with sensory problems appears to be more likely to develop low self esteem and self critical behavior. They are more likely to exhibit socially inappropriate behavior as well as difficulty expressing emotions in a healthy way. The odds of having problems with anxiety are a lot higher in this population making a challenging situation sometimes worse. I will admit that I find it challenging sometimes myself.

This post is so basic that I beg of you to not make any diagnosis or take to much out of it. I just wanted to take a little time to introduce the topic to start a little basic awareness. If you want more information, please feel free to leave any questions you want answered in the comments or speak to a medical professional about your thoughts. Both of these diagnoses are still debated by healthcare professionals so if you would like more information, be sure to find a provider who has studied and has knowledge of both sensory processing disorder and sensory integration disorder and the nuances between them. Thanks for sharing. :)

Journey Forth #2 : The Dietary Needs of Celiac Disease Along with Skin Challenges

In principle, a gluten free diet is quite a simple thing. An individual who avoids four specific foods that carry the gluten protein / amino acids are safe and can refrain from more damage, but also begin healing as well. Those foods are wheat, barley, rye and triticale. That seems pretty easy on the surface especially if you look at the list of flours and foods you can eat- sorghum, soy, seeds, tapioca, teff, wild rice, yucca, amaranth, arrowroot, buckwheat, cassava, corn, flax, Indian rice grass, legumes, millet, nuts, potatoes, quinoa, rice, soy, beans, vegetables, fruit, most dairy and meat, eggs, etc... However, that is where the simplicity ends.

For anyone who doesn't cook... or cannot afford fresh and unprocessed food, the challenge has just begun because an individual who tries to navigate the waters of grocery shopping can become seriously depressed. Fresh food is great and healthy, but pretty expensive. Processed gluten free foods are becoming easy to get, but there is not a lot of choice (most of it is desserts, bread or mixes) and they are also expensive- sometimes several times more money than the 'regular' product. (An example would be bread... the average price of wheat bread is around $2 or less... a gluten free loaf is usually at least $5.) And gluten is in everything else... it's in soups, spices, drinks, dairy products, snack foods, and almost anything you can buy to eat. It's also in almost all personal care products, medicines, and cleaners too. To add a little more difficulty, gluten-free food is usually not fortified with extra vitamins and minerals so it is more crucial that balanced and appropriate foods are consumed. So, for the most mildly affected, they need only navigate the complicated food maze of shopping and cooking and only worry about personal care products that can accidentally be ingested such as lip balm, medicines, mouthwash... some basics that some people do not use anyway. But for the more challenged, the more sensitive... for those whose immune systems are completely 'wacked out', they are in serious trouble. (I will admit that I made up that scientific term :)

For most celiacs, the skin is a great barrier not only for protection from many disease, dehydration and from gluten. Holding a pile of flour in their hand is nothing if they wash carefully and wandering into a bakery with the air full of the smells of fresh bread and wheat is only a tease to a person who cannot taste. To those, the majority of celiacs, I am a bit jealous. I have found that sometimes I do not even have the luxury of recognizing the 'smell' of the baking and the gluten that has been atomized in the air before I am struggling to breathe and heaving... bent over and sometimes vomiting with a strength and a lack of control I didn't know I possessed. There are many places I will not go due to this extreme reaction that my body and my mind can not seem to control. If I go into a place and start to not feel well or suspect that there is very little chance of being able to avoid exposure or illness, I leave. I may be angry, sad, frustrated... but I leave anyway. It's just too terrible to contemplate the pain and distress of an exposure... the pain and vomiting that lasts for weeks, the shaking, twitching, itching, headaches... no church activity, no community activity is worth it to me. I've tried too many times and suffered for sometimes months afterward to really risk that much again. One challenge that I have is that my skin is not a good barrier; while it does protect me from many diseases and most dehydration, it is an unloaded shield against gluten.

Skin conditions that can go hand in hand with celiac disease range from the 'simple' to the more complex. Only two conditions – that of hives and of Dermatitis Herpetiformis- can be clearly labeled a cause/effect of the disease. These others are still under study by researchers and medical professionals to determine which came first... the celiac or the skin disorder. It is unknown why some of these disorders occur together so frequently; wether they share common genetic roots or that gluten may be a common trigger. where aren't too many so I'll give some basic information on them with the formerly mentioned first. :)

1. Hives – This word describes a rash or outbreak of red bumps on the surface of the skin that are warm, itchy and usually appear quite suddenly upon either contact or ingestion of a product/object that someone is allergic to – some common allergies that cause this form of swelling and rash are peanuts, cats, bug bites, etc... This is not a very common side affect in celiac disorder and is highly debated in the medical community with some for and some against. I have sometimes gotten hives from external contact with gluten and I do very much avoid it as I have felt sick or had some symptoms afterwords – this has happened EVEN when I didn't know the gluten was there and actually thought the food or product was safe. Other people have reported hives after gluten exposures on the cheeks and arms/wrists.

2. Dermatitis Herpetiformis – this is a painful and itchy skin manifestation of the disease. For many people affected, they will feel minimal digestive complaints so this is usually diagnosed with a biopsy of the sores and bumps on the skin which are caused by the immune system in the intestine itself producing an antibody that enters the bloodstream and can collect in the small blood vessels in the skin, causing the sores and rashes. This quirk in the celiac disorder affects more men than women and the skin problems usually resolve with the gluten free diet and usually are not exacerbated by touching gluten- very much an inside the body sort of thing. And I must stress that this skin manifestation is in no way related to the herpes virus – this is a problem with gluten and celiac disease, pure and simple. These blisters are painful and can be very challenging to hide which adds to the stress of the situation for the affected individual. It is also very often confused for other problems including bug bites and allergies, eczema, dermatitis herpetiformis, hives and contact dermatitis and psoriasis.

3. Psoriasis – This disease causes the skin to become thick, scaly looking and red. It is caused when the immune system sends out faulty signals that tend to speed up the growth cycle of the epidermis layer of skin cells and is thought to be one of the most common autoimmune disorders in the United States. So skin cells that would take weeks to reach and replace the outer layers of skin would now arrive at the surface of the skin within days and it is this action that causes the common symptoms. Many patients often have high levels of gluten antibodies in their blood even if they haven't been previously diagnosed. In some individuals, psoriasis will not only affect the the skin but the joints and will develop arthritis as part of the disorder.

4. Acne – The bacteria filled, painful bumps and 'whiteheads' that can form on the face and the rest of the body are fairly well known to many people- especially teenagers. They can be caused by general hormone fluctuations, but in celiac disease, they are thought to form from hormonal imbalances caused by the malabsorption of nutrients... robbing the body's systems of the correct tools it needs for homeostasis.

5. Dry Skin (chronic) – This is very common in those individuals affected by celiac disease and in its mild to moderate forms are pretty easy to control by lotions and even supplements. It is thought to be caused from the lack of nutrients that are able to get to the skin due to the inability to absorb nutrients and it has been found that thought who follow the gluten free diet may still be deficient in some of the skins specific nourishing needs (such as vitamin E) due to removing most or all grains from their diet... even the 'safe' ones. For individuals whose bodies are really unable to recover from the gastrointestinal damage that has been caused, this can be a life long problem.

6. Alopecia Areata- This auto immune condition attacks the hair follicles causing the hair to fall out and in some cases, fail to regrow even with treatment. While the majority of sufferers develop bald spots on the scalp, other areas of the body can be affected as well including areas of beard growth. Some individuals also report symptoms of skin tingling or pain in the areas of hair loss. There is some evidence that living a gluten free lifestyle can change the health of the hair follicles and allow for healing and some hair regrowth... but it is certainly not a given! Also, an individual with celiac disease who continues to eat gluten can get alopecia from nutritional deficiencies from the malabsorption of nutrients- these deficiencies include iron, vitamin C and the B's, biotin, selenium, calcium and protein.

7. Eczema – This is a skin condition that is more likely to affect people who already have some problems with allergies. The skin develops inflammation and raised bumps or areas of severe irritability. Depending on the affected individuals skin color, the affected areas make look reddish to brownish color or may look lighter or darker than the skin around it. All the stricken areas tend to also appear dry with thickened or even scaly skin. No matter what the rash or discoloration looks like, it is always itchy! This disorder is found more often in children and there is growing evidence linking the development of eczema in those with celiac disease.

8. Keratin Pilaris – This skin condition usually manifests itself through tiny goosebumps- like marks on the skin that feel a little bit like rubbing a shark skin the wrong way or even mild sandpaper. They are most common on the back of the upper arms or on the back itself, but can also be found on other parts of the body on the skin. When they appear on the face, they can sometimes be mistaken for acne. They are more likely to be more prevalent in winter or in an environment that is cooler with a lower air moisture content. The good news is that while this spots are not pretty and may be distressing to the person who suffers from them, they rarely hurt, itch, or do anything that caused discomfort to the patient. This disorder is also common amongst individuals who also have eczema.

I am extremely lucky. While I have challenges with dry skin often and hives occasionally, my health has not been affected by any of these skin disorders. As research continues on into the causes and needs of all of these disorders, I am hopeful that many of them will become more rare and less challenging for those who have to live with them. Are you or anyone you know affected by any of these skin disorders? If so, do you have any experience with any of the potential links above? Have you been tested for antibodies or attempted the gluten free diet for symptom relief? If you have followed a gluten free diet for a while, will you share your thoughts on it and how it has helped (or not helped) you and your health? Any tips for those navigating the beginnings of gluten elimination in the diet. Please share!

Start of a Journey: Discussions on Celiac Disease

If there is one thing I have learned over the last several years after my diagnosis with celiac disease, it is that this disorder is so complex and causes so many different challenges to the body that even those who have been diagnosed and struggled with the disorder for years still find that their knowledge may not explain all the questions and concerns that they uncover going forward in their lives. I still have so many questions that my physician cannot easily answer or that science hasn't discovered an answer for yet that I find trying to explain the condition to some one who has never had it and make sure they truly understand feels near impossible for a few reasons. One reason is that every person with celiac sprue is different and exposure, heredity, years before diagnosis, and past eating habits can make a really big difference in how the disease is perceived and managed. The confusion that some people feel from knowing both individuals with celiac disease and also from knowing individuals with gluten sensitivity and not knowing the differences between the two disorders as well as the other differences mentioned above is truly understandable. After some recent conversations with a few friends and a wonderful Relief Society President, I have decided to try and take the opportunity to explain the basics about the disorder but also to explain how it affects me... understanding that my experience is not nor can it be the same as anyone elses. My symptoms, my challenges all may be different from the majority of other patients. What I can do is try my best to explain what I do know to the best of my ability- allowing people to correct me in the comments or mention their own experiences and try to start a conversation that will bring more understanding and acceptance for those of us who struggle with it, but also to those around us... who want to help and are not sure how and don't really understand what all the fuss is about anyway. :)

So I am going to break down the information into different posts based on topic and space as its actually a lot of a convoluted information. I will try and cover the most common symptoms as well as sister disorders. I think it's also worthwhile covering long term problems, foods both allowed and unacceptable, and other topics that may become a part of the life of someone with celiac disease. If anyone reading this has questions, wants to add things, etc... please do not hesitate to comment. Let's start a conversation and help and educate each other! That will make the effort that I am putting forth now worthwhile and a joy indeed.

A Spontaneous End to a Day....

So, I didn't go to sleep last night until long after 11pm. I have no really good excuse as I was feeling pretty pooped! However, I decided after work to do some errands and spontaneously decided to pick up the food waiting at the church for a struggling member and head over for a visit. I think these spontaneous decisions sometimes turn out to be some of the most significant choices that I make at certain periods of time in my life. I end up not doing everything that I 'should' – the house is not clean, my bed in not made and I haven't read my scriptures in a few days... but I find that I can look back on the things accomplished, feel satisfied and even find that some of my thoughts and future plans can change to the better. I awoke this morning in a much better frame of mind than I have been in a week.

Two things that were unplanned yesterday is that I did head down to see a member friend and ended up sitting for a few hours and just chatting. I consider this sweet sister my friend and yet I have been so busy over the last few years I haven't really kept up with or spent much time with her. Sitting in a glider with her on her porch– one of my favorite kinds of chairs and a kind I haven't sat in since the divorce- I sat and listened and I talked too. I feel like we both understand each other and what is going on in our lives and hearts much better then we did. I had even left the phone in the car so I didn't notice anyone call or leave emails for me or CPR or anything else until I left around 8:45 pm. I drove away knowing that my commitment of service for this sister had ended and that I have no real service commitments now... and yet I feel a renewed purpose to try and pay more attention not only to her but to others and even in my exhaustion and relief I feel an energy and a motivation to spend more of my energy and resources towards that. I hope I find myself more willing to squeeze in visits like these with people. (Earlier in the week I was invited and circumstances made possible a visit to a family at church whose house I have never been to and to see them outside of church and activities and it was pretty neat too... another spontaneous get together. Maybe that is a lesson I should keep in mind- that I enjoy visiting and joining other people, but it is easier and more enjoyable when it is not planned so I do not have the opportunity to worry or fret about it.)

When I left her house and pointed the car down the road towards home, I received a call from my ex husband and we ended up talking until almost 10:30. We talked about many things and what was fascinating about our chat is that it is the longest call/ conversation we have had since the divorce and it was also the most open and honest one in a long time that didn't get a bit angry and hurtful by either of us by the end of it. We chatted about Bug and then chatted about diets and 'cheating days' and health. After a bit we moved into what I considered more troublesome territory and we talked about Kate Kelly and her recent excommunication and John Dehlin and his appointment this Sunday and the church and gender inequality and modesty rhetoric and sexual assault and power... not a surprise the conversation took a while ;) I talked about what all of this means to me and he talked about the new things that he had learned on the internet and we both found surprises in each other. He was surprised about some of my knowledge on gender and race issues in the church and I was surprised that he had truly taken the time to try and look into all of it instead of just reading an article or two. It felt like he figured I couldn't know some of the flaws in church culture and even past actions and still be a member of the church- in his defense, I can understand that opinion and have had troubles sometimes dealing with those particular problems. We were able to express our thoughts and feelings about a lot of it and learned a bit about some of our actions in regards to church and people in it while we were married. I think that was a great opportunity in an of itself. Trying to turn our relationship into a strong friendship is something that I have been working towards- the better we get along and communicate, the better for Bug after all.... and when the call was over I lay in bed surrounded by slightly annoyed but purring cats. (Didn't I know that it was past bedtime!?! :D ) I thought about the conversation between us and just how amazing and unique it really was. I certainly have a bit to think about over the next few days and weeks in between patients and other work.

So my mind is more hopeful and optimistic today. I am tired but doing OK. Feeling more settled with the world right now and able to see the longer perspective more easily. Life is full of suffering and disappointment, but it is the small choices and the ways we look can really bring out the small joys around and in us. We just have to look for them. :)