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Caption: People with fibromyalgia have to deal with body wide aches, painful pressure points, crippling fatigue, and severe depresson. What they hate the most is being told they're not sick.  Fribromyalgia is real, treat it right.

 
sinisterporpoise: (Default)
I tried to make potato bread last night, but after cutting and heating the potatoes for use, I  left them in the microwave and forgot about them. When it came time to think about tonight's dinner. I decided to skip the potatoes, throw some extra flourin, and use the french setting on the bread machine.  It worked well enough. Most of it is gone.

Now, if this flare would just go away.
sinisterporpoise: (Default)
 I have encountered many treatment and diet suggestions that purportedly help with my condition.  Usually people make these out of a place of concern. I will listen to them patiently. If I think the suggestion has merit, I may act upon it. If I do not have information, it means I will research it first.  Failure to act immediately is not a judgment against someone trying to give me additional information. I am only exercising skepticism and trying to avoid the many snake oil scams that target people with certain conditions. If a suggestion has merit, I will do my own research. I may even try it, provided that the information does not contradict what I already know. Anyone who gives me this information should have some faith that I will reach out to them if I want their help managing my medical conditions.

Such advice often extends to dietary issues. People often latch on to the latest fad because they think it will improve their health.  Gluten-free mania and the paleo diet are the best examples of this at the moment.  Despite what some alternative health practitioners believe, removing gluten from the diet does not benefit fibromyalgia patients unless they also have celiac disease.  This is also true for almost all autoimmune diseases, with one obvious exception. (I know there are a few other conditions that may require a person to cut out gluten, but I do not know what they are off-hand.)  Until leaky gut has more scientific evidence behind it, should such a thing ever occur, I will remain skeptical.  Believers put forth plausible-sounding theories, but I have not seen any research coming from academic sources that proves the existence of the condition.

People who have fibromyalgia and/or autoimmune conditions – other than celicac disease again – who have tried these methods and found that they work should not give them up.  Such patients may experience the placebo effect or the nocebo effect. They may even have undiagnosed wheat allergies or celiac disease. I will not question their stories about how one of these diets worked for them as long as they do not insist that the same diet will work for me. (I’ve tried it. It didn’t do much. Besides, I had reasons *for* trying a gluten-free diet, reasons which include a doctor who just wrote my symptoms off as fibromyalgia before he ruled other conditions out.)

Politely thanking a concerned party and turning down their suggestion is not a rejection of the person. It only indicates that I have decided not to follow that person’s suggestion. I am likely to dismiss ideas that come across as pseudoscience. If the idea sounds plausible to me, I will ask for more information. Any person who has made it this far should avoid using phrases like “Google It.” The third party brought this information to me. By engaging in a conversation, I have already made the reasonable assumption that  they want me to ask about their proposed solution.

I understand that the people closest to me and compassionate people worry about my health, particularly if they see me on high-pain days. Please make the assumption that I really am doing the best I can with the resources I have available.  Unlike the concerned third party, I have to live in this body every day. This body is better than some and worse than others. Assume that I know what works for me and what does not.  Do this  and  I will do my best to return the favor.

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 1.) Lobby to provide low-income coverage to residents of the state of Indiana and get approved
 2.) Provide paperwork that shows an impressive array of services  at what are supposedly cost-saving measures.
 3.) Sign up  the state and get customers to pay a modest premium
4.) Do everything you can possibly can to prevent those services from being provided
5.) Ignore federal law that says you can't discriminate against transgender people, frequently change the gender marker every time a doctor's office sends in paper work with a gender marker that is the opposite of your legal gender
6.) Refuse to pay for this low-priced medication on principle, even though you've already refused to cover Linzess and probably certainly wouldn't cover Lyrica because there's no generic for it at the moment. (Thank goodness I'm on gabapentin.)

Okay, I'm done complaining.  This is the second time they've pulled this particular trick. I'm getting sick of it.   It was a fairly good day  until I went to pick up the prescriptions.
sinisterporpoise: (Default)
(Note: Readers can see the video here.  There is a lot of valid criticism to apply to this message, but I am only applying it to my situation.)

Yesterday, I came across a video called, “Sometimes we just need to shut up.” I am not going to argue for or against the Vlogger’s advice on a broad level, but I think it’s applicable to me.

When I first started suffering from intense pain in my right thigh nearly a year ago, I complained vociferously about the pain I felt in my right thigh. It’s understandable. The cramping kept me up at night, and the pain almost brought me to tears.  However, even I got tired of it, and I realized other people probably got tired of me complaining about it. The only lasting effect I’ve had from this is learning a lot more about migraines than I’d care to because my roommate now figures it’s safe to talk about her symptoms when she experiences them. 

Perhaps one of the things that drew me to journalism in the first place is the belief that information should be shared. I want to put helpful information out there so people can use it.  A side effect of this is I often offer up information that people do not need to know or even care about.  (This could indicate that I’m on the Autism spectrum.)   At first, I told everyone how I felt, but eventually I realized that most people do not care.

It does not mean that complete strangers are cruel or heartless. It’s just that they do not know me. They have problems of their own that they do not share with me on a daily basis. A complete stranger has no reason to trust me with this information, and even if they did, there’s often little I can do about it anyway.  Some of the people who I might have told, including co-workers, might not have had my interests at heart. Because my workplace is dominated by women, I know that its interpersonal politics can be quite vicious.   Starting the job while presenting as male shields me from some but not all of this behavior.

I don’t always withhold this information when I should. If I experience a lot of pain, I may let this information slip because my mind is elsewhere at the moment. I’ve also had to answer the questions of persistent people who can see that something is wrong. One customer even handed me a business card and told me he could fix my problem.   (That business card is now hanging on the refrigerator, ostensibly in order to build a ‘quack file’ of people never to contact.)

Now, she suggests just saying that someone is fine as a way of starting new conversations or taking a break. I am not as social as the woman who does the Chronic Babe vlog and Youtube videos, but regardless of why she or I do it, it’s still a good practice not to focus on what is wrong all the time.

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I expected to start panicking sometime before they removed the bones from my toes when the podiatrist told me he scheduled me for the surgery. Oddly, I'm still not clear on why the doctor ordered the surgery, even though I'm pretty sure the podiatrist knows what he's doing on th is case. (I'm not too sure he's right about the soft tissue inflammation causing the ankle problems, but I'll wait to see if the orthotics actually help. The only thing I am sure of is that this is not fibro pain.

But at least the fear has not become overwhelming. It seems to be just a little bit of nervousness. It may increase now that there's a little less than 48 hours until the surgery, or it may stay where it is. Perhaps it's because I know a little of what to expect and I hope that some of the problems I've been happening are connected in some way.
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Despite having my funds nearly drained, I renewed my Y membership yesterday.  I went into the pool for a while and took some swimming. I also just took some time to soak in the heated pool. Muscles felt much better afterwards, and this feeling continued to today.  Because I was feeling better, I decided to see if I could handle the exercise bike again. I did not do the cardio workout, but put it on fat burn and set it for 25 minutes, with the caveat that if the pain got too bad i would get off.   I made it 22 minutes.

Now, I'll have to see if I can work more parts of my old workout routine into my fitness regimen. I'm going to keep swimming in it though.

sinisterporpoise: (Default)
 I do not care for people who are positive all the time, although I know negativity can be draining. I also know I tend to focus towards the latter.  When I encounter someone online who  seems to be positive all the time, a darker part of me fantasizes about firing a crossbow bolt in their directions. In some cases, a large ax is involved, even though I have no particular fondness for axes. There are good reasons why I do my best to keep this part of my personality in check.  I don't know if this has something to do with being socialized as male, although I'd like to think it has more to do with my German* heritage. (And yes, I know Mennonites, which my ancestors who came to this country were, are pacifists.)

Even though I often feel this way, I cannot be snarky or downbeat alot of the time. The latter end can be just as draining for the people around that person. It's why I'm excited to spring come after a long winter. It's also why I'll be happy to go see Insurgent sometime this week. 

Sometimes, it is hard. Particularly if it's been a month filled with annoyances, which this March has been.  Sure, it may be full of the type of struggles that some people say make life worth living, but that doesn't mean that these situations aren't stressful when they occur. Nor does it mean I will not engage in schadenfreude guiltily when the situation allows.

To let it all out, here is what this March has featured:
1.) finding out I needed to have my wisdom teeth pulled
2.) finding out my dental insurance doesn't cover teeth extractions the next day unless the tooth is damaged or infected
3.) Deciding to go see the doctor for nausea, stomach cramps and constipation. ( I was pretty sure Cymbalta was the           cause.)
      Note: I had also placed a temporary ban on doctor's visits until the next one in April.
4.) Being kept on Cymbalta because it wasn't and being given a new medication for IBS-C.
5.) Finding out I had bone spurs and being referred to a podiatrist at the same visit
6.) Getting a cold from the doctor's office. (It could just be seasonal sinusitis.)
7.) Going into a fibro flare and having to leave early on the first day of warm weather, ensuring a continued reduction in hours.

And of course, my old friend anxiety wants to make keep thinking about the worst possibilities for #5, even though my logical mind assumes it's just from poorly fitting shoes.  I'll find out what it means on the 24th.


*From my mother's side. My father's family came from Switzerland, and might have an ancestor or two mentioned in the Martyr's Mirror.
**Yes, I'm engaging in stereotypes and shouldn't be.
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Okay, I've managed to go out to the local mall for a bit. I've even gotten editing done. Assuming I've set the privacy settings correctly, I should have even gotten a backup of the second draft posted onto my Dreamwidth account. (It is not a huge deal if I did not.) As usual, I had planned to make dinner tonight for the housemate and I.

This plan lasted until I stood up to take the planned items out of the refrigerator and the freezer. I got up and immediately saw why any plan that involved standing for a long period of time wouldn't work. I turned to the housemate and said, "I think you're making dinner tonight" as I grabbed the back of the couch to steady myself.

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