Pain; But You have Make-up, Jewelry and a Nice Outfit On!

But-you-dont-look-sick

A while back, I blogged about using self-advocacy; in that blog it was my experience with a medical professional. One of the items I brought up during that blog, and advocating session, was the fact that I had make-up on, matching outfit, and nice jewelry; even my hair was done up. I said, “I don’t look like I am in pain, do I”? This came to my mind today as I raced to get my outside appearance “put on”, in order to go to yet another medical professional. I began to wonder, “what if I looked sloppy, would I receive more help”? This is a completely unfair situation, one I should not have to even ponder.

There are many days when I am not so dapper looking. However, when I must go out, I wish to look nice. It helps me to feel better. But, would I be taken more seriously if I looked less kempt? I am uncertain, but living with hidden, chronic pain, I think the answer is yes. If I had another, hidden condition, I could look like whatever I desired when out and about. Medical professionals would immediately take me seriously when I entered their office. The general public would still not know I had a condition, or syndrome, no matter what hidden disability I suffered without a visual cue, such as a brace, crutch, wheelchair, or other.

All this pondering leads me to a personal conclusion; when necessary, I must inform those who need to know that I am in pain, despite my looks. Just like a person with a heart condition or diabetes would need to. When I don’t need to, I will take joy in putting on my lipstick, jewelry, and matching clothing. Actually, I will enjoy this when I go out no matter what the circumstances. Where is it written that I must look bad to feel bad?

 

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Fibromyalgia or Chronic Fatigue Syndrome; Both?

Fatigue from Post Concussion/Tramautic Brain Injury

Chronic Fatigue or PCS

 

Cousins, Individaul Syndromes or?

Ever since I was rear ended in 2013, I have experienced fatigue. I sleep much worse than before the accident and I can not handle more than 4 or 5 hours a day of taking care of anything; this includes just sitting and making phone calls to schedule doctors appointments. I always had a bit of fatigue, but this is new to me. I feel fatigued again today, so felt it was time to bring up these two syndromes; separate syndromes or one syndrome.

I found the research article above that has some answers, but not enough. It does assist me in trying to decide what is going on, although my inner jury is still out. I was exhausted for two years after my accident and towards the end of those years was able to blog every day. I know find that more duties, like those doctor phone calls are piling up and the rest of my day is over when I am finished. I can’t handle my prior eight hour days anymore. I stay in bed for half the day. Just blogging this today is hurting my arms, wrist and fingers, along with exhausting me and causing a headache.

I finally have a clear enough mind, I suffer from some mild post cognitive issues after the accident, and am pretty sure that something tipped in my immune system during the accident and I do suffer fatigue. I felt it was my body healing for many months. It could also be brain fatigue, not to be confused with brain fog, but does it last forever? I don’t know the answer to this. I do know I will be starting a group for brain damage soon, so that should give me further answers.

Whether it’s my brain fatigue or chronic fatigue syndrome, I am tired every day. I am leaning towards the side of having both at once. Any of my peers who are wondering about their exhaustion, I hope this short rant assists you to begin to draw conclusions about what you need to do on your path to wellness.

Interesting Research Finding; Persons with Fibromyalgia have Smaller Nerve Fibers

livingyournewlifewithchronicpain

2013 Research on 41 Participants with Fibromyalgia Found Smaller Nerve Bundles at the Periphery of Body

I thought this was interesting. As the article states about this research, it does not explain all the symptoms, but, it may have some merit. It also discusses an immune or pathology cause not yet found. And, of course, it brings back the chicken and egg question; personality types and psychological affected reasons. Despite this aspect of the questioning by the authors, give it a read.

Updated 1/25/2016:

I messaged a peer about keeping positive as fibromyalgia is not progressive; doesn’t lead to being wheelchair bound for instance. I received a message from another peer that she is somewhat wheelchair bound due to small peripherary nerve pain. This took me back to this quick post and I posted another, similar, article in response to her, with my sympathies. While this is an interesting find…

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Yes, People with Chronic Pain/Fibromyalgia do Work

livingyournewlifewithchronicpain

new good spirits new good spirits

working and firbo assistinng huricane katrina survivorsWorking while surviving and planning to live Well with Fibromyalgia is not uncommon. I have worked, volunteered during Hurricane Katrina, spent 8 years in college and then two years in graduate school. During those last two years, I interned 24 hours a week; with a full schedule at the university. I was in pain and many days it was a struggle. Once every other month I had to call in and tell them I was unable to come in as my pain level had increased. Usually, I was able to cover most of the work from home, otherwise I completed  the next day. It was an interesting experience to work with my fibromyalgia syndrome; in many ways.

I never had a supervisor or coworker come right out and tell me that I was incapable of performing my job duties. I am actually a very competent worker, or was then. Most coworkers were considerate about…

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mini-miracles

Hi Barbara,
I reposted to this to my blog as I like that you are showing our ability to be positive despite all our struggles. I keep reminding myself, and others, that there are other medical conditions that are also just as bad. Yes, we do have a medical problem that sucks, but we are not progressing to losing limbs, becoming wheelchair bound, or dying. It may sound like small gifts, but, to me it is a gift.
Lucinda

Life is Grace

It’s so easy to get into a rut this time of year. The January Blahs, I call it. Grey, dreary skies, the post-holiday blues, temperatures dipping below zero, some of the shortest days of the year (yes, longer than in December, but not by much), nasty, dirty slush everywhere–all of these things add up to one crummy mood. So I just trudge along, each day blending into the next.

And in the process, I completely miss the beauty in the world because I am wandering around with blinders on, unable to see the miracles happening all around me. Because there are miracles, and beauty, even in January. We just have to pay attention.

You can become blind by seeing each day as a similar one. Each day is a different one, each day brings a miracle of its own. It’s just a matter of paying attention to this miracle.–Paulo Coelho

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My Encounter with a Health Professional: Practical Advocate Lesson

 

Chronic Pain Hint for Advocacy

Advocating with your various medical professionals can be daunting to those who are already worried that their invisible pain syndrome won’t be taken seriously. It can double in agony if you have found a doctor but are afraid to rock the boat of the relationship. I have, unfortunately, way too much experience in dealing with this double edged sword. After 17 years, I am no longer afraid. I am actually more than willing to find a medical professional who understands me, who listens, and who has the ability to understand that my syndrome affects me differently from others; translated, I am sorry doc but I do need different treatment from your “regular” patients.

I have blogged about being your own advocate many times before. In this blog, I am going to relate a real, and personal, story about my advocating with a new medical professional; one that I thought already understood my medical issue. As it turns out, I was not only completely wrong but was caught off-guard at the worst time. The professional is a therapist who is helping me with my PTSD from a rear end motor vehicle incident (MVA) that occurred two years ago now. A big piece of this emotional nightmare arouse because my fibromyalgia basically doubled, leaving me with a Master’s degree and no way to work.

When I first was diagnosed with our syndrome, I spent three years figuring out how to get my life back on track. It took a lot of hard work on my part, discovering my passion and, keeping a positive attitude. I went through my own, private, grief process over losing my life as it knew it before, but never anything close to PTSD. The MVA tore into my psyche, leaving me absolutely numb and left with the knowledge that my future as an independent therapist was probably never going to happen. I am now working on these feelings with my therapist, but on this day I almost walked out the therapists door five times. Instead of walking, I continuously re-gathered my thoughts and advocated the hell out of her problem.

Scene. I hadn’t been in for three weeks, two weeks of the holiday season and the last week, I had been doing just what we discussed, following the weather and cancelled my appointment two days in advance based on the forecast that we were in for a massive storm. I rescheduled for that same week, different day. Scene. I walked in and sat down, paid and waited to discuss how the heck I could get out of this mindful less issue  and start my life again. Instead, the therapist began a discussion, that lasted my entire fifty minute session, about how it was the Super El Nino winter, I could be put on a waiting list and if she had a opening she would call to see if I was available, or, we could just put off treatment until perhaps April! After-all, she had a waiting list of other people who would be consistent and when I signed the agreement I agreed to pay for any missed sessions. Never mind that I told her two weeks later that with the impending weather pattern this would not possible, and, she agreed.

The statement left me in shock. I have never had to pay for missing a doctors appointment, never. Somehow, they have all understood that I have pain in my body that is out of my control. I have had to call them as late as two hours prior to an appointment to cancel and never have I heard anything but, hope you feel better soon. Maybe you are thinking here that I have been lucky. Nope, I have advocated with all of them. So, back to scene. As soon as the initial shock wore off, I began. How exactly would it help me to wait another four months to begin healing? How is helping me to heal by coming in completely by chance? After-all, if she had new patients, odds are they would fill her time. How much have you actually done what I asked and researched fibromyalgia? How would you feel right now if you had fibromyalgia, add a screwed up right knee from the MVA, PTSD, doubled fibro, and gaestroparesis? Do you know how often peers with fibromyalgia get dismissed because our pain is invisible? Yes, I look all groomed; make-up on, jewelry, nice outfit, it all looks good on the outside, but that has nothing to do with how my body feels today, on one of my ok days. Oh, you wouldn’t want someone coming in with the flu, but if I have a medical condition that the barometric pressure affects, causing me intense pain and brain fog, that’s ok with you?

I am now 30 minutes in and the roles have reversed. I am now her counselor on medical issues. And, a bit on therapy. I asked her why she waited to take up my entire session on this after we already had an agreement? I asked her what she would do if she had a patient come in with a condition she was unfamiliar with, wouldn’t she spend time researching the best methods to help that person? And, the flu was understandable, but if someone had a heart problem, or diabetes, or, or, and couldn’t come in a few times, would that be alright? After all, those are also invisible medical conditions.

Scene. Roles switched, compliment given to me by her and agreement reached. I understood she had a business and if I missed two in a row, then I would pay my co-pay for one of the missed appointments. Apparently, although she did not admit it, she had the three weeks in a row in her mind; she cancelled one, and the other was “open” during the holidays, in consideration of which I cancelled four days ahead of time. Lets face it, the holiday season is hard on the medical profession. She agreed to do further, more in-depth research, on forums and blogs, to understand what we go through. She agreed she should have done more before. She agreed that she should have emailed me.

The question remains, do I feel a safe rapport with her now? Time will tell. I hope this personal glimpse into my story of polite, but pointed advocating for myself, will assist you to help yourself.

Taking Full Advantage of Those Days When Winter Weather isn’t Knocking our Socks Off!

Winter Weather Knocking Your Socks Off

 

http://www.mysnippetsofinspiration.com/wp-content/uploads/2015/06/blow-your-socks-off.jpg?7e71b0

This El Nino weather is certainly knocking me for a pain loop. In the last three weeks I have a extreme pain flare about twice a week, one week, three! I was prepared for this, or at least I thought I was; I was not entirely ready for the intensity. I did mentally note that this would probably occur and find myself more accepting of the days when I have to give up doing anything I had planned and spend my day on the couch.

By preparing, I accept these days better and use my days not in pain to do the best I can to catch up. Of course, I am not really getting all I need to do accomplished. When do I ever? I have changed my normal course of dealing with household chores, and out doing errand chores, to dealing with whatever is the most important and leaving the rest for when I can get there. There remains a niggiling of guilt about this, but overall I feel good.

I have discovered over the last 17 years that guilt or shame doesn’t serve me well when it comes to pain I have little control over. Weather winter is the one place where I simply can’t change anything about planning how to approach pain. It is pain that pops up as it will. It is and it has it’s say about my body. Period. Accepting this frees me from negativity.

This would be a large issue if I was working currently. I simply could not unless I was allowed to have a flex schedule that allowed me to work any day that I felt “normal” pain levels. I did not see that happening and despite the real fact that I am dealing with other problems that make work not an option, I planned on waiting this winter out before trying to even find work I can do again.

This is more than just a check-in about my life and pain. This is written with the hope that my peers can find inspiration in my life story and not guilt trip themselves with negative thoughts. If we have no control over events, how can we be guilty?