Symptom Sleuthing

Sjogren's syndrome is an autoimmune syndrome that affects the moisture producing glands, and can affect any system in the body. Add to that Fibromyalgia, Hashimoto's thyroiditis, lactose and gluten intolerance, and you get (or I should say, I get) endless sources of symptoms. I like puzzles, so symptom sleuthing is right up my alley. Warning: this blog post mentions bodily functions.
The gluten intolerance I discovered a couple of years ago when I tried a gluten free diet to see if it would help my Sjogren's symptoms. I had read that people with autoimmune issues often do better on gluten free diets. It did nothing for my pain or fatigue (darn it!), but my out-of-control acid reflux disappeared.
The lactose intolerance I discovered years ago when I started having really stinky gas, but only on weekdays. I figured out it was the milk I was putting on my cereal for breakfast. On weekends, I tended to have bagels or toast, with no milk. I started using a lactase pill that I took each time I ate dairy products. That solved the problem.
Later I found a capsule from a company called Digestive Advantage that I could take once a day, and eat dairy any time I wanted. Digestive Advantage has several products, for lactose defense, for intensive bowel support, for constipation and for gas defense. These products all have a natural probiotic and enzymes or other natural ingredients. They also have probiotic products. These are good products when used properly (read below). Give one a try.
A few weeks back, I looked at the ingredients of the different products, and thought that I read the same ingredients of the lactose defense version on the gas defense version, plus other ingredients. Why not get the extra benefits? I thought. I started using the gas defense version 3 weeks ago. Last week, I started having that stinky gas again, despite using the Digestive Advantage capsule daily. I figured my body was getting more sensitive to dairy.
I started to use the lactase pills again each time I ate dairy, and started looking for dairy substitutes. I tried almond milk yogurt, and coconut milk yogurt, despite having issues with coconut in the past. The almond milk was fine. The coconut milk caused, shall we say, worse problems than the regular milk. So I'm thinking I will use the lactase pills to finish off the dairy products I already bought, then go dairy free.
Kapow! My Symptom Sleuthing Mechanism kicks in. Hey! Didn't I switch from the lactose defense formula to the gas defense formula right before this started? I went on line to the Digestive Advantage website, and checked the ingredients of the two products. Aha! Only the Lactose defense one contains lactase enzyme, which is what helps digest dairy! It was not a problem with my digestive system, it was a problem with my eyes, and reading the boxes properly. Good thing I am a symptom sleuth, and was able to figure this out, or I might have given up dairy for the rest of my life for no good reason.
As you can see, symptom sleuthing is not just about what you ate, but about many other factors. In doing your own sleuthing when a new symptom arises, you might want to start keeping a journal of when, what, how, where, etc. the symptom occurs. Anything you ate in the day or so prior, any changes in anything in your life in the past week(s): deodorant, shampoo, laundry detergent, any new food, any new place you went, new clothing, carpet. Even a different brand of generic medication can set off an allergic reaction if you are sensitive to one of its ingredients.

Helpouts by Google Helps Out

Need help? Try Helpouts by Google, started early November, 2013. This site hooks up people who need help with virtually anything with people who can give that help by video. It doesn't actually send the person to your house to move your furniture, but it can hook you up with someone who has suggestions of how you can move the furniture more easily.
The way it works is this: providers (individuals or companies) sign up with a title of what they are offering, for instance, guitar lessons. They give a paragraph with a more detailed description, when they are available, and the price. It can be a set price, such as $50 for an hour session or it can be priced by the minute. The prices people have set range from free up to $150 for 45 minutes for the offers I viewed. There is no contact information visible, that likely appears when you click to sign up for something. People who want to learn a skill, or need help with a problem, can look it up and find someone who is offering the service they need. Or, you can just browse and see if something strikes your fancy. For some of the Helpouts, you schedule your session ahead of time, for others, you can do it right away, depending on how the provider has set it up.
Categories include Fitness and Nutrition, Health, Art and Music, Cooking, Computers and Electronics, Fashion and Beauty, Education and Careers, and Home and Garden (at this time). Within those categories are hundreds of topics, which, over time, I am sure will become thousands. Perhaps your roof has a leak, or your souffle always falls, or you want to learn to play the piano.Your computer has a virus, your dog has fleas or you want to lose 6 1/2 pounds. You get the idea.
Helpout sessions are done by video connection, so the two people involved can see each other. (I won't go into how this is done, you can learn about it on the Helpouts website if you are interested.) If the session is about something that needs to be fixed, the camera can be aimed at that object so that the person at the other end can see it. At the end of the session, there is the ever-present five star rating system and you can leave  feedback. And, there is a 100% money back guarantee.
As their home page states, Real help from real people in real time. I think this is gonna be big.

Healthline

I got an email the other day from a marketer asking me if I would include their site on rheumatoid arthritis on my blog as a resource for my readers. I looked over the site, and found it full of good information, not only on RA, but on many other diseases as well. The link for the page the marketer sent to me is http://www.healthline.com/health/rheumatoid-arthritis.I would rather tell you about the whole site, not just the RA part.
If you go to their homepage, http://www.healthline.com, the top half of the page is very sparse, but it is the gateway to much of the info. You can click on 4 tabs, Symptom Search, Treatment Search, Drug Search, and Pill Identifier. Along the top of the page are two more tabs, Health Topics and Health Tools. Health Topics takes you to an alphabetical search of diseases. Health Tools has eight tools, including Body Map, Doctor Search and Symptom Checker.The bottom half of the page is full of fresh articles, blogs, videos, etc.
Every disease I thought of was there. I read the main entry for Sjogren's Syndrome, just to see what a random (or not so random) entry was like. It was a good, general coverage of the topic. I would recommend it for someone who is newly diagnosed, someone who is not yet diagnosed, but trying to figure out what they have, or someone who has a friend or family member diagnosed with the disease. It is also good for someone who wants to know about what they have, but does not want to be overwhelmed with every detail.
Someone with Sjogren's who likes to keep up on the latest research would not be satisfied with this site (Though there is some research elsewhere).  Nor would someone who wants to know all there is to know about their disease. For example, the discussion on symptoms of Sjogren's was fairly general, and the article did not mention any of the medications we use by name.The RA page was more in-depth, and I will hazard a guess that other more common diseases are as well. The RA page also includes a video overview of RA.
Whether you have rheumatoid arthritis or some other malady, click on the link above. Look up your disease, or someone elses. Learn about symptoms or drug interactions or find a doctor near you. Explore the videos and blogs. Whether you refresh your memory or learn something new, you will likely find it worth your while.

Helping Others

I was at the grocery store last week. The woman in the checkout line behind me was using one of those electric scooters that many stores provide, with a big basket on the front of it full of groceries. I asked if she needed assistance putting the groceries up on the conveyor belt, and she was very much relieved. Both she and the cashier repeatedly thanked me. It made me very pleased that I was able to help, that I had offered, and that I helped her. At the same time, it made me sad. Why? Because they both felt the need to thank me so profusely.

It should be human nature to offer help whenever we see it may be needed, and we can provide it. It shouldn't be seen as such an extraordinary deed. No one religion has a monopoly on helping other people, including strangers. It is not unique to any one culture. Rather, it is a human thing to do. It is a part of living in a community.

Whenever I see someone struggling to get in or out of a car, to reach something in a grocery store, etc, I ask if they need any assistance. If they say “No”, I say, “Good for you”. If they say “Yes”, I will either jump in or ask what they want me to do, depending on how obvious it is what needs to be done. People are often too embarrassed to ask for help, but relieved when it is offered. I am sure there are some people who are annoyed or insulted that I would ask, I hope that my praiseful response appeases that.

The person needing help could be any one of us, depending on the circumstances. If you don't need help today, maybe you did last week, or will next week, or next decade. The person offering help should be every one of us who can, in whatever ways we can. I know that many of my readers are in pain, and/or have varying levels of fatigue and functional abilities. Even so, there may be areas where you can offer your help: holding a door open, feeding a baby, reading to a child or person undergoing chemo, etc. Remember: if you are the one receiving assistance, you are providing an opportunity for another person to be helpful, thus making them feel good about themselves. 

Priorities: Live Your Life

Setting priorities can sometimes be a difficult task. Other times, the priorities set themselves. I am in one of those situations right now. With the new school year started, my work is picking up rapidly. I am an occupational therapist. I started a new job last spring with a company that provides therapy for children who attend several virtual school systems here in Ohio. They do their classes via the internet, but I see them face to face in their homes, the farthest is 40 miles away. (Luckily, I get paid for therapy time plus milage.)
I had 2 kids I saw very briefly the end of the last school year. Now I am up to 6 kids I see, half of whom I see 240 minutes a month or more. An hour or an hour and a half a week per child doesn't seem like that much time.If you add in prep time, note writing time, and driving time, it begins to add up.Especially since I have not worked with kids in years, so I am having to relearn what I forgot, and catch up with all the new stuff that has come along.
I started feeling stressed, trying to work out a system to keep all my paperwork straight for these kids, learn what I need to know to treat each one for their particular issues, and keep up with my blog and other writings. It wasn't happening. One day it occurred to me: I am my own boss. I am doing the OT as an independent contractor, so I can set my own hours (with the families I see, of course), I can decide how many kids I see, etc. Same thing with the writing. Ideally, I would blog daily, and write a little on my book daily, but life isn't ideal. I had been blogging about once a week. Lately, it has been about twice a month. I think that is where it will stay for the time being.
This has been a hard decision to make, even though it eased my stress as soon as I decided to cut back on how often I try to post. I feel like I am losing a part of myself, like one era has ended, and another, unfamiliar, unknown one has begun. I guess that is true. I am starting a new adventure as an OT for children. I am losing the freedom I have had since I was laid off last February. I guess that is my lesson for today: don't be afraid of starting a new adventure, recognizing that if you do, you may need to cut back or drop some current activities. That is life. Live it your way, and to the fullest. I will be here writing a new post twice a month.    

Document, Document, Part 2- Keeping Track

I last posted on the importance of documentation when filing for disability. Another situation where documenting is important is keeping track of something that you don't use often, such as where you put it. You may be sure it is obvious, or that you will remember, but, what if...? Two weekends ago we were at our cabin. Our main water supply comes from a big tank buried up the hill near the road. The water comes down the hill through a pipe, powered by gravity, assisted by a small pump. When the tank was buried several years ago, there was a 24" diameter neck of the tank sticking up a few inches above the ground, topped by a green domed lid. Surrounding the tank is natural, wild growth: tall grasses, wildflowers, and blackberry brambles.
My husband decided to put some chlorine in the water tank to get rid of anything growing there. He went up the road, chlorine bottle in hand, to treat the water. He came back half an hour later. Mission accomplished? Nope. As nothing can grow on the lid itself, and it is raised up from the surrounding ground, one would think that the lid would be obvious. If one thought that, one would be wrong. He came back to get me to help him search for the lid to the water tank.
The entire area is totally overgrown, the ground uneven with rocks. The weight of rain knocked the grasses down and laid them out, covering much of the ground. We searched the area with feet, hands, sticks, shovels. We sweated, we got bit by mosquitoes, but we did not find the lid to the water tank.
If only we had written down somewhere '3 feet to the left of the telephone pole and 6 feet back', If only we had a photo that showed the angle of the water tank in comparison with the cabin. If only we had, in some way, documented where the tank was located...
Voila! We got home, my husband looked on the computer, and found some pictures he had taken when the tank was put in. We were back at our cabin this past weekend. He found the tank in 3 minutes, thanks to his documentation. We had been looking in the wrong place before. Note: Keep your documentation where it will be handy when needed.
This idea applies to all kinds of things.Perhaps you have a key to an old trunk or drawer. Or something you are saving to give your daughter when she turns twelve. Or where you buried the time capsule in the back yard. Of course, you don't want to advertise where you put your valuables. Your documentation can be in shorthand only you would understand, or can be kept in your underwear drawer, if it would expose valuables
.I have a tendency to write myself notes on scraps of paper, then lose the paper. Not only should you document where you put whatever it is you want to remember, but you should also keep the documentation someplace where you will remember it. Oy. It gets so complicated. We laugh at my husband sometimes because he puts all kinds of information in his phone that no one else thinks to write down. We stop laughing and know who to go to when we need that information.
How about a recipe that you tweaked, and really liked the results? Of course you will (not) remember what you did different when you next go to use that recipe. Document it, in this case, right there on the recipe. If you can't bear to write directly in the book, or over grandma's lovely handwriting, use a sticky-note.
If you are like me, and have a laundry list of maladies, it can be hard to keep track of everything. For example, I have tried many different kinds of eye-drops, with varying results. Some burn, others itch, some don't help much, and a few actually work for me. It helps to keep a list, in case I am ever tempted by a sale or recommendation to try something I don't normally use.
Our lives are so complex, most of us have too much going on to keep track of everything. That's what calendars and address books (or contacts) are for, and any other form of documentation you choose to use.

Document, Document, Part 1- Disability

I read recently on an occupational therapy (OT) forum about an OT clinic where they say that if it isn't documented, it didn't happen. In other words, write complete and accurate notes of all therapy sessions, phone calls, etc. Documentation is so important in so many aspects of our lives.In my opinion, I think we overdo it sometimes, with people taking pictures and videos with their phones of absolutely anything and everything. On the other hand, sometimes we don't document when we should. I have a couple of specifics in mind.
Many of us with chronic illness and pain may at some point want to or need to file for disability. If so, having documentation is critical. We have no control over the documentation of our various doctors.We can tell our docs how we are functioning each time we see them, and ask that this info be included in our medical record. Hopefully, they are keeping good records, but this isn't always the case. We can ask for copies of our medical records. You have a right to see them, though some places charge a 'processing' fee.
More important than medical records are your own records. Keep a journal, documenting sleep, medications, pain levels, how your pain and/or illness affect your functioning, what it prevents you from doing, what you can and cannot do. Keep track of all your doctors' appointments, all the meds you try, and how they work for you. If you are still working, document any difficulties at work, accommodations you need, number of hours you are able to work, how you feel/ how you function at the end of a day of work. Document how your social life is affected, and anything else that you think is relevant to your functioning ability.
Also, don't be a hero. Don't tell family and friends you are fine when you aren't. I know a lot of people don't like talking about their issues, but if you believe you should get on disability, there has to be evidence that you are disabled. Don't be a complainer, but let people know when you are hurting, when/what things are difficult for you. Ask for help when needed.
Having good documentation and clear evidence that you are disabled does not guarantee that you  will get approved for disability on your first application, but t makes it much more likely.
My next post will be about another situation where documentation is very helpful.