Corner of Asperger and Sjogren

Do you know what happens when you reach the corner of Asperger and Sjogren? Confusion, overwhelm, and shut down.

It seems like everything is happening at once. My ACA insurance is more than doubling if I want to maintain the same policy. Going through the Marketplace to shop for a different policy was overwhelming last year, and no better this year. Worries about Washington defunding the ACA is a looming concern. This is only one part.

My doctors suspect more health problems, so I have been going through many tests, the most concerning to me is the possibility of heart disease - something common with Sjogrens, but something I REALLY don't want. So far tests have come back clear, but that only means different tests have to me done. I'd much rather find the problem is gluten intolerance and simply adjust my diet. Some years back I'd gone gluten free, so I know it can be done, I just haven't done it lately.

Then there are the constant dental problems. I have a dentist who says I should do as much as I can to maintain what teeth I have left, already lost enough to make eating difficult, hence reintroducing gluten into my diet with noodles and such. My thoughts are running more along the lines of; attempting to maintain my teeth is just throwing good money after bad and I would be better off finding a way to finance getting them all pulled and replacing them with full plates. Most of the new cavities are along the gum/root line anyway, so they can't be filled, just pulled one after another as the pain gets too bad. Thankfully, with Aspergers, the 'pain' really isn't all that painful.

Add to the mix the mundane problems around the house. Needing to find money to cover having a window replaced. The bathroom door had been sticking so it was taken down to be fixed. When it was rehung we discovered not only had the problem NOT been fixed, it no longer even shuts!

There are so many things that need to be done, and need to be done quickly, that the only thing I want to do is hide under a rock. I can't think straight anymore. An old but toxic friend has decided he wants to reenter my life to "help" me out. He doesn't realize how much energy it costs me to be around him for more than a very short period of time. He, on the other hand, thinks we should work on becoming a couple. Yeah, and I'll end up in a coping center within a month.

Help.

Too tired.

So much for daily posts.
Wednesday I had a typical (for me) Aspie overreaction.
Things just haven't been going very well for me the past two weeks, poor sleep, change in schedule, daughter is ill now. I end up feeling so off balance all the time. Don't see my doctor for another week and I'm not really sure what he can do for me anyway.

My rhuemy sent a letter informing me he was quitting his practice because he is sick of insurance companies putting profits above patients. On one hand I can empathize with him, that still leaves me at the mercy of the insurance companies, my own of which has chosen to more than double my rates for next year. I'm paying out of pocket, and as not really sure what to do at this point.

Well, DD needs me.

What now?

This will be short.

I did not spend the evening following election results so it wasn't until this morning that I saw the results. The Republicans are now in charge. The same people who want to repeal the ACA "for the good of the country." Well, because of the ACA in 2014 I had insurance for the first time in almost 20 years. Because of this insurance I was able to have my Sjogren's diagnosed, and obtain the medication I need to keep my symptoms in check.

Now I feel like I am back in limbo. While on the 15th I can go back to the Market Place to shop for coverage - while I would most likely keep the program I am on - I now have the worry that the rug will be pulled out from under me sometime during 2015.

I'm not trying to be pessimistic, negative, or depressed but I'd made a decision a long time ago that I would rather commit suicide rather than be buried alive in medical debt. To those who question 'wouldn't I rather be alive and in debt?' my reply is, I've seen people trapped by medical debt and what they have is existence, not life. I refuse to go through that.

I ran out of spoons!

Yesterday I had a day off from my job, and almost wish I hadn't. While I only work part time, meaning four to five hour days four to five days a week, I've found that working a four hour day actually drains me just as much as working an eight hour day did when I was working full time. Therefore, when I saw that I had the day off I made plans to make the most of it.

Having just recently been introduced to Spoon Theory one of the first things I wanted to do was to organize my spoon drawer. I'd also read a blog (which I can't find again) about the importance of rigid routines when one is on the Autism Spectrum, which I was going to use to help me sort my spoon drawer. Then there was some running around to get various errands done, work on painting the door to my bathroom, which is currently on saw horses and will be rehung once the painting is done, Restart a self-help program that I had stalled out on and wasted several days arguing with myself about whether it was worth it or not, wash dishes that had built up as both my daughter and I had been too tired to get through them for a couple of days. DD is also on the spectrum and works part time.

There were other things I wanted to do as well, and I just dumped everything into one box and planned on it all sort of organizing itself eventually.

So I woke up knowing I had to sort my spoon drawer before anything else. I had not anticipated how many spoons it would cost to just BEGIN to plan things out and I really never even got started on actually doing anything. Sorting spoons, planning a routine, the two tasks just overwhelmed me, until it was time to drive my DD to her job. Okay, so I brought my errands with me and began running around once she was at work. Dr.s office, Post office, verify something at my job, bring the verification back to the Dr.s office. Skip going to the community center and head home. Do a large load of dishes and wish once again that I had a dishwasher. Start paining the trim work in the bathroom as well as start working on the door. Plus walk and play with the dog and get dinner into the crock pot.

Suddenly I had no spoons left and it was only about 1:30 in the afternoon. No matter how I pushed myself, I simply could not do anything else for the rest of the day beyond getting my daughter home from her job. It was so frustrating.

I'm still not quite certain how to sort my spoons. I think it would be easier if I only had one issue to deal with, but I have Aspergers, Sjogrens, clinical depression, and an adult HFA daughter who also suffers from depression. I also have to watch my diet, no bread or wheat products, and I haven't been doing that with pizza for dinner one night followed by a frozen lasagna.  These all require so many spoons just to stay above water, it isn't really surprising how many 'basic' things end up being neglected, such as the dinner dishes.

Done whining for the day. Anyone have cheese and crackers?

What do I say now?

Commitments can be terrible things sometimes. Especially when you over commit yourself to too many projects. After yesterday's post about overwhelm I had to step back and look at everything I've committed myself to do. These are not commitments to other people, at least not entirely, but commitments I've made to myself.

I've committed myself to post here every day, and I've been pretty much kept to that commitment. Pat myself on the back. I had initially committed myself to complete the Liberate Your Life program in the six weeks it was designed for. Well, that didn't work out but I am still committed to completing the program as quickly as possible. I just need to be sure I don't put it on the back burner and forget about it as I have so often with so many self help programs. Programs, books, DVD's and audio disks, purchased with good intentions and left to gather dust and be forgotten about.

I've committed myself to declutter my home. After years of hoarding, this can be so difficult at times. It seems hardest when my DD wants help organizing her things while her things spill all over the house. It gets us nowhere when she says I should not complain about how much she has in the halls and living spaces, because of how much I have in those areas. She even has boxes of her things stored in MY bedroom. It was only supposed to be for a few days and has been over a month so far with no sign of them moving out.

I have Aspergers and she is HFA so when we butt heads it can fairly quickly become a mutual meltdown which accomplishes nothing. 

I'm trying to maintain communication with the few email friends I have,  but some of those are decaying anyway. I've promised myself to connect with the community center to see if I can join their card club. I've been making that promise for almost a year now and I am no closer to doing anything about it than I was when I first thought of it.

It won't do any good to try to fix blame for any of this, I just need to work on solutions and try to maintain the commitments I feel are important.

brick walls and self-improvement

Yesterday I read an amazing article about Aspergers and stress/overwhelm http://www.myaspergers.net/what-is-aspergers/how-to-deal-with-stress-and-aspergers/

While I didn't think of myself as overwhelmed or over stressed, as I read I saw I had all the symptoms and it was impacting me more than I wanted to admit. Not remembering what I'd done in the morning seemed not a bit deal, except that it was becoming a big deal when I believed I'd done something important only to discover later that I had only thought about doing it, but not actually done anything.

The article has links to a couple of quizzes and work sheets that are causing me more stress right now. My time is so tight with things I feel I should be working on, do I really have time to throw in more stuff to do?

Right now I am working through a self-improvement course which is working but also creating a lot of stress itself. Liberate Your Life, by Chris Cade, is about silencing your Inner Critic. It was sold as a six week course and I purchased the downloadable version for which I am now very thankful.

Going through the first week's lesson in a week was a breeze. The second week was almost as easy. The third week I hit a brick wall. A written exercise, to help you forgive yourself, that I just didn't want to do - as much as I knew I NEEDED to do it. I'd fuss around the exercise, but not actually do it, and thus not complete the lesson. The fourth week's lesson arrived, and I started reading it, how to turn your fear into courage.

I remembered an old saying about courage:
                     Courage/bravery is NOT being fearless.
                     It IS being afraid and doing it anyway.

I discovered that I hadn't wanted to do the exercise because I was afraid I would not be able to forgive myself. With a little encouragement from a friend I managed to get through the exercise that nearly stopped me, did ultimately forgive myself, and feel much lighter now. I also decided to step back and start at the beginning again, so I can get into the next lessons with a running start. What struck me most was opening the first lesson to read,
                      "The exercises that are most uncomfortable for
                      you are the same ones that will bring you the
                      greatest peace, happiness, and freedom from
                      your Inner Critic. "

Now I just need to figure out how to fit ten pounds of flour in a five pound sack. Be more conscious at my job. Finish painting the bathroom and spare room. Clean house, repair kitchen drawers, find someone to repair/replace a window.

Hey, I seem to remember reading an article about Aspergers and overwhelm.

Don't trust labels

It seems I've missed a couple of days. Troubles with changing schedules and my plate suddenly becoming overloaded.

DD got a new job, which thrills me to death. But until she can drive I have the fun of chauffeuring her back and forth to work, which turned my routine onto its head. I've also tossed my hat into the online dating ring, which I am already beginning to think was a mistake. Too many people want to play games, and I am just not in the mood for that.

People say things about themselves to make themselves attractive, but on meeting them you discover they are nothing like the way they described themselves. Kind of like the Rugged wear in the picture.

Maybe it is harder for me being older, maybe it's just Asperger's but I expect honesty from people, and the games just turn me off to the whole idea of meeting someone online. Then again I really don't have the social skills to meet people any other way at the moment, so I will look at some of the articles that keep being posted about Aspergers and Dating. The problem with most of those is they are written for teens and young adults just starting their lives, while I am older and starting over. My marriage lasted 25 years because we were both Aspies and were weird in the same ways, but when it fell apart it did so spectacularly. In 10 years of dating, I seem to keep finding Mr. Wrong. Even my DD has told me I have terrible taste in men, and she verified that she included her father in that assessment.

Well, I'm just going to keep looking anyway. Maybe I can prove her wrong by finding Mr. Right.

Drip Drip Drop

Wow. This is one of those time when having both Sjogrens and Aspergers really gangs up on me.

With Aspergers, I tend to procrastinate and also be indecisive. With Sjogrens I suffer with chronic moderate to severe dry eye.

Last night I ran out of my overnight eye drops, which I'd gotten on sale and had been working quite well for me. No problem, I thought, I had a different brand, also purchased on sale, that should do just as well. No such luck. The new eye drops were NOT able to last the night. In fact, despite the 10 hour claim on the box, they only last for three or four hours at most.

This morning I went to Drugstore.Com to see what was available and look through the reviews and pulled up reviews for well over two dozen different eye drops that all had great ratings. Many were easily dismissed as they were also removed redness or had astringents, both of which are no-nos for me. I then dropped a couple that were just out of my price range and I am still left with 25 to choose from.

I'd never considered buying eye drops to be quite so overwhelming, but there is simply a lot of reviews to go through. The fun really begins when I look at reviews for two products that were written by people who had tried both products. One says they have used both A and B and B is worthless compared to A. The other person says they have used B for a while but decided to try A, but after an initial trial when back to B.

To me this shows that everyone is different and what works for one person may not work for the next, which makes going through the reviews even more confusing.

At least I have a tube of gel to get me through the night tonight, and the next few days as once the tube is open it is all I will use until it is empty. Now I may just walk to the local drug store and let intuition be my guide. Or just go back to one of the eye drops I used in the past that I know work for me. Nah, that makes too much sense.

Just another day

Today I'm writing because I've made a commitment to myself to write something every day.

I fellow member of a Sjogren's forum I follow asked today about whether anyone else dealt with anxiety issues. I was surprised at the number of affirmative answers. I had never put my constant anxiety in the realm of my Sjogren's, but as a part of my Aspergers. Maybe it is a part of both and that is why it seems so constant.

Yesterday went well, and I slept well, yet when I woke up this morning the whole world seemed off.

It is taking a while, but I seem to be shaking a lot of it off. Now to see what I can accomplish today.

There are a couple of things I want to talk about today. The first is self-help/political and the second is personal.

First:

If there is one thing that is consistent through all of the self-help, self-improvement courses, articles, and books I have gone through is it that you can't grow if you are in a state of fear. Fear keeps you from growing and prevents self awareness, empathy toward others, and even love. Right now I, and probably everyone else in the USA, is being bombarded with political ads. It doesn't matter who is sending them out, Democrats, Republicans, or even some of the Independents,  they all use the same tactic. Fear. There is fear of the other party gaining control of congress, fear of terrorists, fear of job loss, climate change, environmental disaster, the list goes on.

The fact that many political ads are false, or exaggerations, or misleading about the cause of their fear, is unimportant, as is who is making and promoting those ads. What seems important to me is the idea that so much fear is being fed to the public that it makes it almost impossible for anyone to think clearly, to think about helping their fellow citizens, to think about community responsibility, to think about anything other than protecting themselves. Compassion has flown out the window to be replaced with a core belief of 'it's us versus them' whoever "us" or "them" might be. This is not how a country should grow.

I don't have any solutions other than to try to increase awareness of how we are being manipulated, so each person can let go of their own fears.


Second:

Okay, this is totally unrelated to the first thought. The past few nights I have had difficulty sleeping, which has dragged me down during the day. Various things that have occurred have given me some anxiety, and I have had some difficulty not giving in to fear, but seeing these things as problems with solutions.

With the lack of sleep, I've been lethargic during the day which probably contributed to the following night's poor sleep. I wake up feeling like my lower legs are wrapped in weights and end the day with pains running from my hip to my knee - only on one side, thankfully. Well, yesterday I got home from work and looked at the meadow my backyard was becoming and decided that as I had the next day off from my job I would get the sticks and such picked up so I could mow as soon as it got light. Well, after getting the bits I could see picked up I looked around the yard and thought about how much light was left, and pulled out my trusty mower and began pushing it around the yard. I didn't get the whole yard completed, but the meadow I was ignoring in my effort to keep the street side under control, is now completed. It was amazing how much better I felt after the exercise as well.

AND I HAD A GOOD NIGHT'S SLEEP!!

Let's see what today brings.

PS. If anyone knows the source of the image I used, please let me know so it can be properly credited.

Insurance woes

I felt blessed when the Affordable Care Act was passed and I was able to get insurance for the first time in close to twenty years. I went to the Market Place and signed up for the best plan I could afford and it was a Godsend. I was diagnosed with Sjogren syndrome at that time and began a battery of lab work and doctor appointments. Went in for surgery to have a cyst removed and have been very pleased with the results so far.

Yesterday I received a notice from my insurance company that in 2015 my premiums, after subsidy, will more than double. The payments I had been making were doable, but the new payments are a whole different animal. I've got about a month to go back through the market place and reapply so I can plan out my budget for next year. I'm hoping to keep the same plan I am currently on, but only time will tell.

The experiment continues

Well, it is my second day. So far so good.

Last night was a bit odd. With all the excitement over my DD's new job I was so tired in the evening I forgot to take my sleeping pill. I was up every hour on the hour 4 times, so at the fourth wake up I decided to get up and have some hot coffee (yes, coffee relaxes me). When I looked on my desk, there was my sleeping pill resting nicely in it's container.

Hmm. What to do now? My doctor had recently increased the dosage, and I still had some of the weaker ones in my medicine box, to I returned the stronger dose to it's bottle and took one of the weak ones and managed to get six hours of solid sleep. (Happy dance)

On the self-help front, I've run into my wall. I am taking an online course, Liberate Your Life by Chris Cade, and reading a book, the Reconnection by Dr. Eric Pearl. They fit together amazingly well, or did until yesterday. Both of them reached a point of requiring me to fulfill certain exercises before continuing at the same time, which immediately sent me looking for the next shiny thing. So far I have held myself back other than to read a wonderful article about procrastination, "Slaying the PROCRASTINATION dragon" by Jackie. http://www.365lessthings.com/slaying-the-procrastination-dragon-by-vicki/?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+365LessThings+%28365+Less+Things%29

It helped me to understand a better way to face the wall. Also I remember a line from "the Last Lecture," which I watched several years back, when he said 'remember the wall is not there to stop you. It's there to determine how badly you want something." Okay, I'm paraphrasing but I'm sure you get the meaning.

Now, for grins and giggles, I'm going to learn to add a picture to my post.

Introductions are in order.

My name is Chris and I am going through some things right now. I've recently heard that extensive writing can help maintain physical health, brain function, and emotional balance. Sounds like a good reason to start a blog to me.

I have currently been diagnosed with two disorders, Asperger Syndrome and Sjogren's Syndrome. I used to write fiction extensively and was even published a few times long before the advent of online self publishing. I would like to begin that again soon, if possible.

With Asperger's I have always had a shot gun approach to life. Aiming for too many things at once and never actually hitting (completing) anything. I wasn't officially diagnosed until fairly recently, as I was a young girl at a time when they only looked for ADHD in young boys, and no one had even heard of Asperger Syndrome. Oh the joys of reaching the 90 to 98 percent point on any given project, just to drop it at that point leaving it uncompleted.

Sjogren's is actually a bit easier to live with, as it is more physical rather than mental/emotional. I take my medication, see my doctors and keep my symptoms stabilized.

There is just one more thing. I have been pretty much addicted to self-help programs. I no longer have any idea of how much money I've spent through the years on various books, classes, online seminars, DVD programs and more. Often they help in the short term without sticking for the long term. With books, they are frequently purchased with the best of intentions, put on the bookshelf and forgotten.

I am currently using one online course and reading a couple of books which all seem to fit well with each other. Other than pushing myself to actually DO the exercises rather than just reading about them, they all seem to be helping me at the moment. As I see the next sparkly object, I keep reminding myself of what the Cheshire Cat said in Alice in Wonderland. "If you don't know where you are going, any road will take you there." I need to remember where I am going and stay on the same road until I get there.

How's this for a first entry?

Be Back tomorrow.