positive

Retrain My Brain – Gupta Amygdala Retraining Programme Review

Posted on by akiwifreund

People often ask me just what it is that I do with all of my time now that I’m stuck in bed. I love writing and I count myself lucky to have been included in the Chronic Illness Bloggers network, and given many opportunities to try products I wouldn’t otherwise have access to. I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

This particular series, The Gupta Amygdala Retraining Programme, is being offered by a doctor who was laid low by chronic fatigue syndrome (which I will shorten to the commonly known acronym CFS), which is also referred to as myalgic encephalomyelitis (the acronym ME for short). The Centers for Disease Control states: “CFS is a debilitating and complex disorder characterized by profound fatigue that is not improved by bed rest and that may be worsened by physical or mental activity. Symptoms affect several body systems and may include weakness, muscle pain, impaired memory and/or mental concentration, and insomnia, which can result in reduced participation in daily activities.” (https://www.cdc.gov/cfs/) The CDC also indicates on their site that despite trying their best to figure out what triggers CFS, they haven’t pinpointed the cause. It could be a number of infections, it could be autoimmune related, it could be something in the central nervous system; they’re just not certain.

I was given this program because I have fibromyalgia. Fibromyalgia shares some of the CFS/ME qualities – mainly crushing fatigue and pain that does not go away with a good night’s sleep. Dealing with constant pain and fatigue also changes your brain and your outlook, affecting the way that you interact with the people around you, as well as your ability to handle your own sickness, or wellness, as it were.

The very first thing I noticed when I opened up my packet was this map from Dr. Gupta.
20170522_092902If you can’t tell, this piece is quite large and almost covers my entire area rug. As we found out, it is an interactive practice piece that you actually stand on and use to help retrain your brain to stop negative thinking.

The other items included in the package were a workbook and a set of audio and video DVDs.
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I was signed up for weekly interactive web meetings as well. In our first meeting, we were introduced to Dr. Gupta, and informed that the web meetings were actually the most important part of the program, and that the DVDs, workbook and practice poster were supporting materials.

The web meetings were 12 weeks long total, so it is quite a commitment if you decide to join the program. And there is a lot of material to cover. However, if you think about it, some of us have been sick for years. I’ve been sick for two decades. 12 weeks is really a drop in the bucket. It’s just a matter of adjusting your schedule and making room, just as you would for a physical workout program. You want to lose the weight? You do an hour at the gym. You want to lose the disease? You do a few hours a week at the Gupta program. 

So what is amygdala retraining? Basically, it’s to stop the negative feedback loop so you can start healing. Your body feels bad, so your mind gets stuck thinking, “I’m not good enough, I don’t don’t deserve friends if I’m going to bring them down, I don’t deserve love, I’m a terrible person, I’m a loser, I can’t do anything right, I hate my body, I’m going to stay sick forever,” etc. If you can get rid of that negative feedback, you can also retrain your brain to start a positive flow of thoughts, including, “I will allow my body to relax, I will feel comfort, I will smile, I’m choosing health and happiness, I trust myself.”

And back to that interactive poster that’s on the ground: That’s the “Stop! Stop! Stop!” technique that Dr. Gupta often refers to as part of the retraining. He encouraged us through the course of the initial training to actually follow the steps on the poster: think the negative thoughts, then hold out our hands and think or say, “Stop! Stop! Stop!” Then we would breathe and smile, return to our loving self, then choose to take the loving path and be kinder to ourselves in our thinking, then visualize health and happiness. We would repeat these steps over and over again – at first slowly, then faster, as if picking up anything that feels clunky at first but then suddenly becomes second nature.

Throughout his sessions he often took breaks for us to breathe, or meditate. We also had time to ask questions or interact. Dr. Gupta warned us that there would be times when emotions would bubble up and sometimes get the best of us. I tend to be pretty stoic except when it comes to dealing with my neurologist and neurosurgeons, so I was surprised when even I had a web session that affected me emotionally. The point is to not hold everything back so that our ego doesn’t get in the way of getting better.

The DVDs and audio CDs are helpful because there are some meditations included, and meditation is one area where I always need improvement and assistance.

Dr. Gupta does advise for anyone going through this program that the changes will be gradual, and to not expect anything earth-shattering immediately; after all, anything shocking would set us back, not make us better. Six months would be a good goal for feeling a significant improvement if you do the work with sincerity. 

I’m grateful to have these materials at hand for the long haul so I can refer back to them as often as I need to – because there’s so much to learn, and I’ll definitely need a refresher from time to time. And Dr. Gupta records all of his sessions so that we may go back and rewatch (or if you couldn’t make it to the session in real time, you can watch at your convenience). I did personally notice a certain calmness and lightness after each session, and I do feel like my attitude has shifted towards all of my diseases; I’m choosing right now to be loved and to be worthy of love, and maybe that will shift again in the near future to another positive focus as I journey on.

Dr. Gupta’s Website:  http://www.guptaprogramme.com/

All You Need Is Your (Whole) Health Back (Movie and Book Review)

Posted on by akiwifreund

Half of the adult population around the globe has some sort of chronic condition, varying in severity. Some are lucky enough to barely be bothered by it except as a reminder on their calendars once every few years to get checked by a doctor for any notable changes. Others can’t move an eyelash without being reminded that their body has taken on a long-term burden and there’s no relief in sight. A huge majority fall somewhere in between. Because of this, and social stigmas falling away regarding the discussion of chronic conditions, the market is being flooded with all kinds of materials and “how to” manuals for coping.

Through the Chronic Illness Bloggers group, I was lucky enough to be given these two products as part of a product review through the Chronic Illness Bloggers network. Although these products were a gift, all opinions in this review remain my own and I was in no way influenced by the company.

The two items that I was given in tandem were a documentary called “The Connection,” and a book called “The Whole Health Life.” I didn’t approach either medium with any expectations, which turned out to be a good thing, because I tend to be very particular and picky – I don’t want my movies or reading materials to be too “preachy,” nor do I want them to assume that I know nothing about my diseases. Most of the time I see manuals out on the market that are written with new patients in mind, not with 20-year war veterans like me.

First, I’d like to cover “The Connection.” I’ll admit, I reached for this first because I didn’t feel like I had the attention span to get me through a book right out of the gate. I was quite pleasantly surprised. It was a good pace, but not overwhelming, while still giving the audience constant reliable information to process. For instance, I learned about “medical hexing” – many patients are told by doctors that we’re not going to get better. Would you believe it if I told you that two weeks ago, my primary care doctor told me that I should just give up and accept that I will never find a neurosurgeon who will be willing to help me with another shunt surgery and who will take my tumor out? Boy, is that ever a hex! But a hex doesn’t have to be that obvious. It can be about giving you a pill rather than looking at your whole lifestyle and looking at what can be improved upon. 

More points from the movie hit home for me, especially since I’m having such a hard time finding doctors who will help me. For instance, if I have zero support – friends, family, doctors – I’m three times more likely to die early. Luckily I have some really great family and friends. Also, belief is part of why we get better, but it takes both the doctor and the patient believing. So far, I don’t have the doctors backing me up. And I also learned from the film that our genes do play a major role in what we do develop as far as diseases go, but our life experiences and our environment also trigger the genes. In other words, you could be perfectly fine but if you go wading knee deep through an oil spill, chances are that MS is going to come leaping out that has been lurking all these years.

So if you haven’t picked up on it, the documentary “The Connection” got my attention. Because of that, I was confident that the book “The Whole Health Life” would be engaging – and it was. And that says a lot, especially coming from someone who has the attention span of a gnat at the moment.

As readers, we can spend more time on the book, relating to what the writer is saying about wading through the soup of pain and foggy brain, trying to get through an able-bodied world and looking normal on the outside. Immediately the author, Shannon Harvey, introduces the core concept: we cannot deal with health by separating “body” health and “mental” health. They are intertwined and inseparable. A pill may address one portion and meditation may address another portion and talk therapy may address yet another potion and engaging in positive social activities may be uplifting, but when consumed in isolation, they hardly make a difference. When combined, they improve a person’s well-being by leaps and bounds. Ms. Harvey breaks it down into 10 topics to easier process and incorporate the practices into daily living.

For me, meditation is difficult. As I mentioned before, my mind is more that of a squirrel than it is a turtle, but she talks about the benefits of calming the mind and recommends a few easy steps that anyone can pick up. Emotions logically follow right after that. What are we doing to process our emotions? What do we allow to play on our inner recording? And then there is the “placebo effect.” Let’s try changing the name of this, the taking of sugar pills and still seeing positive results, as if a patient has taken “real” medicine; what is really at work is the power of belief. The belief that a patient can heal and become well again (or at least have an improved life) that comes with the motion of the taking of the medicine is just as powerful as the drug itself and has been documented for hundreds of years; it’s why people “pray” when it seems all hope for recovery is lost.

Of course, on the physical side, what we put into our bodies and how we move our bodies makes a huge difference. Eating the foods that are the best for us, sleeping the right amount and exercising to the best of our abilities are all important in our recovery and maintenance.

As a “spoonie,” as those of us are known who have chronic conditions that cause fatigue and pain, many of us keep blogs, as I do, as well as participate on social media like Facebook, Twitter and Instagram. We seek out others who are like us. We appreciate having others who understand our daily (and sometimes hourly, minute-by-minute and second-by-second) struggles. I think that “The Whole Health Life” would be a good book to read and re-read because we tend to get stuck in patterns that reinforce the negative feedback loop – myself included. If someone isn’t feeling up to concentrating on words, then they can sit back and watch “The Connection” for some reinforcement.

Please visit the documentary movie “The Connection” here.

You may purchase the book “The Whole Health Life” by Shannon Harvey through Amazon here.

Oooooo, That Smell!

Posted on by akiwifreund

For those of you who don’t know me in real life, I am a Taurus (for what it’s worth – not that I base my life on astrology), and we’re known for liking the finer things in life, including the best tastes, the softest fabrics, and the most enticing smells. I couldn’t wait to try this product out because it is both aesthetically appealing and I knew it would throw wonderful flavors into the air, making my Taurus heart sing. (Please note that I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions remain my own and I was in no way influenced by the company.)

I was provided the “Raindrop” version of the essential oil diffuser by Organic Aromas; the base is available in a light wood color (pictured) or black.

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At first when I opened the box and glanced through the directions, I wondered if this might be something complicated. After all, there’s a lot of parts – the base, the receptacle, the top, the power cord…and here are the instructions including how to put everything together, and how to care for the piece:

But I think what it comes down to is that the company put a lot of thought into how to make a product that is both beautiful and durable. This isn’t something that you want to have break on you within six months or get so full of gunk that you have to invest in another one. Part of our responsibility in our commitment in striving to use items that are recycled and/or organic and/or generally good for us and our world is that the goal is to not add to the waste exponentially in our landfills and our oceans by not caring for what we build and use. So if you decide to purchase this Aromatherapy Diffuser – and I can smell so much yummy-ness as I write this because I’m running it right now – please take care of your unit so you can enjoy it for a long time to come.

My space in my efficiency apartment/flat (read: my living room is my bedroom) is at a premium, so generally speaking, I don’t have much room to spare for knick knacks. I decided the place that would best serve my needs would be the “window” between my kitchen area and living room/bedroom – mostly because it’s also where one of my two electrical outlets in the entire apartment is located. No joke. I’m almost afraid to run my microwave and my TV at the same time.

I plugged this in and turned the knob on, and immediately it started glowing. What happens is the scented oil circulates within the glass globe, and there is a small opening at the top of the second piece that is seated on the larger piece that you remove when you are adding your oil, so the scent travels out of that small opening but is not overwhelming. Because the oil churns in the larger glass portion it sometimes looks like a fountain inside and is quite calming to watch, like looking out a window on a rainy day. The super, duper cool part of this diffuser is that there is a part that lights up in the center and changes color from green to orange to red to blue and then back to green again. You can see in these pictures what I’m talking about. (Excuse the pose-able figurines, they’re just waiting for their next assignment.)


Something else that’s great is that there is zero noise with these units. The changing colors and no noise factors could make them great for a meditation room or a baby’s nursery or child’s room – just make sure they are kept far enough away from little hands so they can’t be pulled down.

Organic Aromas thoughtfully provided a bottle of their own blend of essential oils so that out of the box, the diffuser could be used right away. However, I always run into this problem: I am deathly allergic to lavender. Even typing that word made me itch. I opened the bottle and took a whiff and it smelled nice enough, but I knew I couldn’t take 2 hours daily of an induced asthma attack. I keep my own organic essential oils on hand to make room and fabric sprays, so I placed peppermint and tangerine oils in my diffuser. Man, my place smells so good! Gone are the stink of my one neighbor’s day-old Dinty Moore stew in the garbage, or my other neighbor’s 20-year-old cat who hasn’t made it to the litter box in at least 5 years.

There is an automatic safety feature on this unit in that it will turn itself off after two hours of continuous running.

I think I found my new little happy place, and it is about 5″ wide by 9″ high and smells like heaven.
Raindrop Diffuser Organic Aromas

But I’m A Nice Guy

Posted on by akiwifreund

I have grown to dread this self-proclamation: “But I’m a nice guy.” In fact, I have grown to develop a specific distaste for OKCupid profiles that are like “Niceguy4U” and “niceguy69” and “goodguy98787.”

Why? Well, if someone has to keep telling others that he is “nice” or “good,” it’s likely he’s not. The key is to get past the words and watch the actions. 

For about a week I was chatting back and forth with a guy who claimed he wanted a real relationship. His screen name was something like “Love4You” – red flag right there. We messaged for a few days and then he asked if we could text, so I agreed and gave him my phone number. Then he asked if we could get on the phone, so we chatted that way. He told me it was really great to talk to me, and that he felt at ease with me, and that thinking about me and our conversation made him smile. I thought he was really friendly and enjoyed our conversation too.

We made a date for last Saturday, but it fell through because he had to have work done on his truck. He suggested we make a date for the next Saturday. Between that afternoon and this evening, we spoke on the phone a few times, and we texted multiple times each day. Mr. Nice Guy said that he wasn’t interested in sexting at all. I told him that I thought that was refreshing. I also told him – multiple times – that I don’t want to talk about anything like that until after we met, because it puts unrealistic expectations on us when we do meet for the first time. He agreed and told me he was much more interested in sharing his life with someone – specifically, me – and he was already talking future plans, like what he was going to cook for me and where we could go, even with my physical challenges.

Again, through all of this, Mr. Nice Guy repeatedly told me that he liked my sense of humor and that he smiled when he thought of me. He told me that I had a very positive attitude. I told him that I was looking forward to our date on Saturday. He said he was too, that he thought we’d have a great time.

Another red flag: On Tuesday (Super Tuesday for voting!), I got a message from Mr. Nice Guy saying, “Can we meet Sunday instead of Saturday? Busy day.” I told him that would work for me, and he thanked me. This was the second time in less than a week that he changed the date.

We had gotten into the habit of saying good night every night. On this particular night, I told him sweet dreams, and asked him what he would like to dream about that night. Mr. Nice Guy answered, “You.” I said, “Thank you. Where would you like to go in your dream?” He said, “In my dream with you?” I said, “Yes. Pick a place and we’ll go there. I’ll see you in your dreams.” He said, “In bed.”

I didn’t see this right away because I was still trying to change for bed as well as wash my face and brush and floss, so he noticed the big pause and said, “Too direct?” When I saw his messages, I said, “Didn’t we say we weren’t going to go there at this point?” He said, “Yes very sorry.” I said, “I just don’t want to jump the gun.” Mr. Nice Guy said, “That sounds good to me. Falling asleep” and he ended his text with a very enthusiastic smiley face. The trouble is, he didn’t go to bed. OKCupid showed him logged into the system until 9:40 pm, later than our interaction. That reeks of looking for a piece of ass, in my book.

The next evening I sent Mr. Nice Guy a text greeting him by name and asked him how his day was. He answered, “Very busy. Had a 5 minute lunch. Stayed 45 minutes on overtime. Gonna get much more busy.” And then he said, “Good night” – at 7:45 pm. You bet your sweet ass he was logged on for a few more hours on OKCupid.

Then at 6:05 pm tonight, I got a message that said, “I met someone. Good luck in your seach” (bad spelling included).  How did I respond? “Nice.” How did I want to respond? “You’re a dick” would have been appropo; so would have “You’re a fraud.” I mean, for someone turning 50 in a month, you would think he would have the manners and integrity to be truthful with me and call me instead of texting this ridiculous made-up story. I am pretty sure that’s why he’s still single.

I have his number and messages blocked on my phone and I blocked him from seeing my profile or messaging me on OKC. However, I can still see his, and he was logged on for three and a half hours this evening. With as quickly as he wanted to move to chatting on the phone, Mr. Nice Guy’s claim that he met someone is obviously false because he’s still trying to hook up with someone.

A couple things could be happening here:

1) Mr. Nice Guy really does just want sex and is not interested in a relationship;
2) Mr. Nice Guy is still married;
3) Mr. Nice Guy is embarrassed that I turned him down;
4) Mr. Nice Guy is pissed that I turned him down.

Whatever the reason, that’s one less man-child for me to raise. Mr. Nice Guy isn’t so nice after all.

 

Isn’t That A Co-inky-dink?

Posted on by akiwifreund

This year began on pretty rough ground. First, Quato from Total Recall was growing in my left ass cheek and trying really hard to bust out. Every day for three weeks (including some weekends) someone had to look at my bare ass. Then my body got so stressed out from not being able to stay flat every day that my tremors came back. I have been feeling just exhausted. I wish I had a Keebler elf that I could pull out of my pocket and demand that s/he do all of my dishes and scrub my tub and toilet.

But here’s the thing: I’ve been getting some validations.

The start was getting the image of a lemon cake, the kind like my mom made when I was a kid, in my head. I could picture myself mixing the lemon curd to make the frosting, putting that on the layers, and then cutting myself a slice, still kinda warm. Later on, before I left to go to the meditation class, I caught up with a friend I haven’t talked to in about a decade. She told me that she made herself a lemon cake that afternoon to celebrate her own birthday.

Last night I thought to myself, “Call S. in Scottsdale.” I didn’t know why I thought that, because we talked two weeks ago and I figured that update would have carried us over for a bit. Ten minutes later she called me to tell me she had moved (somewhat abruptly) and her plans changed from what she told me two weeks prior – she decided to stay in Scottsdale rather than pursue a job opportunity elsewhere.

My final ride for the evening yesterday on the short bus involved me being picked up from the grocery store and redeposited at home. It ended up being a really, really long ride – since it’s a ride share, rarely is one rider picked up and then brought to their destination without stopping elsewhere first. The driver and I started chatting while we waited for one rider to finish with her church group. I heard, “Tell her you’re selling your car” in my ear, or brain, or however you’d like to think about it. Anyway, I worked it into the conversation. She became serious and asked me what kind of car it was because she and her husband were looking for a second vehicle. I didn’t really do a hard sell with her because ultimately I didn’t think it would be something she would seriously consider; my car is a hatchback, and she was talking small SUV. Still, it was worth a shot.

I’m not really sure what I have to do to keep connecting with the universe, but I guess I had better get a move on.

 

This solar innovation by a Swedish artist uses surprisingly simple technology to save lives

Posted on by akiwifreund

Source: This solar innovation by a Swedish artist uses surprisingly simple technology to save lives

I cannot stress enough how exciting it is to read about this, and how many lives are benefiting from this invention. It seems so simple – which means that there is less of a chance of failure of parts for this water purifying system.

Crouching Tiger, Hidden Creeper

Posted on by akiwifreund

I’ve been on an opera kick this week. Puccini is my absolute favorite composer, so I’ve had that station going all week while I have read articles, organized my taxes, and for the first time have colored in my “adult coloring book.” I’m a little slow on trends sometimes.

I often don’t understand the meaning of the songs because who here speaks fluent Italian? Not I. But it certainly adds a little flavor to my tasks. Also, it’s the funniest thing to run across some slow-motion films of dogs wiping out in the sand or attempting and failing to catch treats or toys in their mouths – so dramatic when Maria Callas is wailing!

I was feeling very passionately that my OKCupid profile needed another revamp. Guys don’t care what I’m doing with my life or which books I’ve read or if I know all of the cool places to eat. They just want to know if I will go hunting and fishing with them (welcome to Minnesota) and if I can hook my ankles behind my ears. So I took all that crap out. This is what my profile says now:

MY SELF-SUMMARY
*******I’M ALLERGIC TO:********

– Hookups, FWB, DTF
– Threesomes, foursomes or moresomes
– All animals furred or feathered (even “hypoallergenic” animals), though I love them
– Misogynistic behavior
– Bad behavior and excuses
– Cheaters, liars, thieves
– Poor dental hygiene
– Conspiracy theorists
– Stalkers
– Contemporary country music, rap
– Republicans
– Being called “cutie”
– Organized religion or prayer

The most private thing I’m willing to admit

I don’t get out as much as I would like to because of some major health issues.

You should message me if

– You are a non-smoker (of all things) and don’t use chew/snuff (ever)
– We live in the same country; my preference is to connect with someone in the same metro area because I dislike long distance relationships.
– You know and use proper grammar, spelling and punctuation.
– You would like me to proofread your profile for grammar, spelling and punctuation errors.

Almost immediately after posting these bullet points, a guy hit me up and said I was hilarious, and unfortunately, he was a hardcore Catholic and a Republican – but he really appreciated my sense of humor. We ended up having a really good chat through the site. He talked about his daughters, and how one of them was living with him as well as a nearly 2-year-old grandson. We chatted about the intricacies of finding and keeping a job that could pay the bills without the need to add another job. We talked a little bit about my disease and how it affected my ability to be social.

In all, a respectful, flowing conversation happened. Then I got an unexpected but very welcome call from my close friend in Arizona, and told the guy that I couldn’t chat because of the phone call. He said that was fine and posted his number, and I replied back with mine. He asked if I would be interested in a date. I thought what the hell, if we get along, we both could include each other in our circle of friends.

My call with my friend was pretty lively. She told me about the difficulties she had with men she had dated (or really, had minimal contact with) who kept calling and texting, even though she wasn’t interested and told them so. She told me how one had briefly been a professional MMA fighter, and took it upon himself to put her in a choke hold and then forced her to the floor. Another was a guy who couldn’t seem to accept the fact that she had gotten into a relationship with someone else instead of him, and even agreed to a double date so my friend could introduce him to our other friend – until he realized that my friend was also bringing her boyfriend.

My advice was that she must use small words and tell them why she is cutting them off, and then cut them off. First, they are not respecting her boundaries, and she does not owe them anything. Second, she needs to get her mind out of the space where women are required to be people pleasers and make sure they don’t anger men. That anger rears its ugly head when men think they are simply entitled to women’s bodies. How dare we reject them?

After we ended our call, I texted the dude and apologized for taking longer than I had planned. He called me “cutie” with a smiley face, just to piss me off. The next thing he did was tell me how beautiful my eyes are. I thanked him and told him I appreciated his complement, but I put more value in values than I do appearance. We discussed options for activities where I wouldn’t be up and out for too long (hopefully longer than a high five).

And then Hidden Creeper came out.

I was trying to discuss meeting places with him, and he kept talking about my appearance and how “cute” I am and that he just couldn’t help it. Then he asked me if he could kiss me.

In my head I was saying, “Hold on there, buddy – where in the hell did this come from, Mr. I’m-a-Hardcore-Catholic?” It doesn’t take a rocket scientist to figure out that him talking about kissing me is his code for testing me to see if he can go balls deep. It happens all of the time.

I told him that if we both felt attracted to the other person, then sure, we can have a smooch. But I also told him that I didn’t want to discuss it further, because it has been my experience that if all you do is talk about what you want to do with the other person once you have entered their personal space, and then you actually meet, it doesn’t end well. Sometimes there’s no attraction from one or both parties. but then they feel obligated to ______ because it was talked about. I told him that I wanted to make sure we’re not getting ahead of ourselves.

He replied with, “Ok sounds good” and then stopped texting me. So I still have no idea if this date is going to happen, but my guess is that it won’t.

I feel the change in personality happened as soon as we started communicating off of OKCupid and that is because he knows I could easily block him there and he would have no idea how find me. Luckily I can push his calls and texts to spam if I get some on my cell, but he doesn’t know that. I just feel sorry for his daughters. He revealed to me that his oldest daughter moved back in with him because she’s 24, has a 2-year-old, is kind of lost, and the baby’s daddy is an asshole who took off. I want to shake him and say, “He took off because you didn’t teach your daughter how to value herself, or she may never have let him in in the first place.”

Being able to look at everything and process it in a much healthier way than I have in the past is my present to myself. I’m not perfect, but I’m getting better. I wish everyone else luck, would like to remind you that it sometimes takes effort to get on the right track, and keep holding yourself and other people accountable.

Duck – Here Comes Another Turkey!

Posted on by akiwifreund

The Quiz Master (previously referred to in “What’s Going On With Your Face?” post) messaged me today and wished me a happy Thanksgiving. It was not his first message to me since he signed off with a “goodbye and good day” after I told him to stop contacting me. Oh, no. I knew he couldn’t be counted on to leave me alone, considering how obsessive he is. The Quiz Master also texted me on November 15th and said, “Hey, how are you?” as if I hadn’t cut him off. As if I would come to my senses and say, “Oh, you’re the best Quiz Master ever, I don’t know what I was thinking in telling you to go away.” He, of course, told me that I was pushing him away just because I am stubborn – not because I actually want him to leave me alone. “No” doesn’t actually mean “no” and all that bullshit, according to him.

I also got a cutesy cartoon from the church guy who went radio silent in “Showing Up is Half the Battle.” This was after he sent me messages saying “happy turkey eve beautiful” yesterday, and before that a message saying his aces were up while playing poker and that he wished I was by his side as he was winning.

Don’t worry, I didn’t reply to either of these jackasses. And in perfect harmony with this post, “A Little Respect” by Erasure played on my Pandora while I was typing.

On a different note, I traded emails with one of my mom’s sisters and updated her on what was happening with my situation. She said she had contacted my cousin, who is a doctor of osteopathy (DO), and he said that the doctors are turning me down not because I’m giving them too much or too little info, but because they can’t “win” with me – there is no way they can diagnose me. As it stands right now, there are approximately 7,000 diseases out there in the world that have no name or etiology, and the majority of them are similar to mine only in that the symptoms are neuorological in nature. I have been in contact with some groups that I think should be able to put me in touch with the proper researchers, and there are rare disease groups that focus on finding resources for patients. However, I’m feeling a bit like I’m drowning again. A lot of these groups talk specifically about patients that are children. I know it’s especially troubling when children are stricken with major illnesses; after all, I was sick for most of my childhood. However, now that I’ve managed to become a middle-aged adult while this particular disease popped up, does that mean that my life is worth less? I had my chance to reach adulthood so am I therefore not worthy of assistance?

Every person I talk to tells me not to give up. I am not sure I can anyway. I mean, I had to give up my house, my car and working – what else am I going to do with my time? But at some point I need doctors and researchers to fill in the blanks. I can’t imagine going another 10 years like this and waiting for technology to catch up.

Today was the first time in about 23 years that my sister, my mom and stepdad and I were actually in the same state for a holiday, so we pigged out at my sister’s place. Yesterday and today were pretty difficult for me and I think it has to do with the temperature, air pressure and humidity; we got snowfall that actually accumulated and stayed today. I had to spend most of the time in bed because of fibromyalgia pain, but also my CSF was accumulating like the snow. I was hoping I’d be able to hang out for a few hours before my brain started being crushed, but instead I began drooping noticeably as soon as my stepdad picked me up, and I had only been upright for about 45 minutes at that point.

Wherever you are in the world, I hope that you can find things to be thankful for every day. I’m working on my list.

 

You Get the Seal!

Posted on by akiwifreund

BlogSeal

I have gotten behind in my list of things I wanted to accomplish this week, but I couldn’t let this go anymore.

Thank you to the bloggers who put their hearts out there, all naked and vulnerable, for us to see. And I know that I’m not supposed to do this because it’s supposedly against the rules, but first and foremost, I nominate My Shadow Weighs a Tonne, https://chronicallychronic88.wordpress.com/ right back. I’m a loner, Dottie, a rebel. You matter and I’ll repeat that as much as you need to hear it.

Please also take the time to read these blogs:
http://ilivebreathe.com/ – As I Live & Breathe
https://hopeforheather.wordpress.com/ – Hope for Heather
https://dawner1530.wordpress.com/ – TBI Journey
https://klregister.wordpress.com/ – The Ninth Life

Each blogger has a unique voice and adds value to my days in their own way.

I started this blog because I suddenly had absolutely no where to go – or more precisely, could not go anywhere, but still felt as if I had something to say, and good grief, so many stories to get out there. For years my dating life has been the running joke of my friends (mostly based on the fact that they could never keep up with who I was with at the moment). I can only hope that others are enjoying the ride and can laugh and growl with me.

The only advice I can possibly give is to keep writing.

Blogger Recognition Award Rules:

1. Select other blogs to which you want to give the award. You can not nominate yourself or the person who has nominated you.
2. Write a post to show off your award! Give a brief story of how your blog got started and give a piece or two of advice to new bloggers. Thank whoever nominated you, and provide a link to their blog. List who you’ve nominated in the post. Make sure to attach the award! (You can do this by right clicking, saving, and uploading the image above).
3. Comment on each blog and let them know you’ve nominated them. Provide a link to the award post you created.