Posts Tagged ‘Pain’

InvisDisability

My current medical symptoms would send the average person to the ER…crushing chest pain, blurred vision, difficult breathing, unrelenting migraine headaches, inability to eat normally, tachycardia or bradycardia, high or low blood pressures, insomnia – oh, and the back pain I can’t find any specialist to address because I have already had 6 surgeries, and now, the shoulder that already has been repaired twice is painfully shredding its way out of its socket…I really haven’t had a “good day” in about 12 years. But I don’t LOOK like I’m sick so people think I am a malingerer, just looking for attention, or faking my symptoms.

I guarantee I haven’t developed the magical ability to manipulate my blood tests, MRIs and various other medical tests so they come back abnormal.

I have had a difficult time learning to accept my medical issues. I have many symptoms in many systems that cannot be classified into any particular category. I have most recently been dumped into the category Ehlers-Danlos Syndrome (but not any particular type, of course) as this seems to at least catch-all the symptoms I display in some way. All of my official diagnoses have the letters “NOS” after them – “not otherwise specified.”

It really stings when people are just plain callous about my health issues – and it is the worst when these people are the doctors that are supposed to help me. I have had to had to do a lot of my own research within professional resources (Medscape, PubMed, etc.) and advocate strongly for myself. This has meant seeing many doctors in an attempt to find one willing to take on my complex issues and try to piece together the puzzle that I am. I have been treated quite harshly by many health professionals due to my complexity. I understand that they may to want to take on a patient they cannot easily figure out. It would just be nice if they could not be so abrasive in their dismissal of my symptoms and test results.

Because of the unpredictable nature of my symptoms, I have lost what few social connections I had. I spend much of my time alone, at home. I used to find solace in online forums, but I have found many of these are similar to real-life support groups that tend towards a circular discussion of hardships – and never achieve any growth or change. What would be helpful is a directed, online resource or app that provides guidance and education in the management of chronic illnesses and the psychological challenges people like me experience. Can such a thing become a reality?

I have always had to be a survivor – my Type A personality and perfectionist tendencies helped me through the cPTSD (complex PTSD) from 14 years of sexual abuse, rapes, and general cruelty from classmates. I found ways to cope – all on my own. I never really had much of a support system. Now, to be sidelined from so many activities that used to define “me,” was – and IS – quite distorting to my thoughts and feelings about life in general.

Anxiety has replaced what used to be stoic resolve.

Anger and resentment that I was formerly able to tap into as energy to push through rough situations – to make myself physically stronger in the gym, or mentally tougher in the workplace – now comes to the surface in staccato bursts, and those closest to me (my husband, primarily) suffer the consequences.

It took me about 6 yrs to be able to say the words “I can’t.” This is NOT pessimism. It is pure, unadulterated realism. And with the myriad of undiagnosable conditions I live with, I HAVE TO be realistic. To think any other way is deleterious.

I know this goes against the “rainbows, unicorns and fluffy bunnies” mentality that most self-help resources (and professionals) seem to think is THE ONLY WAY is the way to overcome hard times. But, with the help of a therapist that specializes in treating people with multiple medical issues, and, a good PCP that is a realist, I learned that I HAVE TO say the words, “I can’t.” It’s really a no-brainer – but 99% of people just don’t have the comprehension of how their body actually works to really understand. Simply, it protects me – and others – from injury. An example of this would be not getting behind the wheel of my car when I am having certain symptoms.

Don’t misunderstand me, it doesn’t ever feel comfortable to say “I can’t” – and many people don’t “get” this way of thinking at all, nor do they even bother trying. This leaves me feeling isolated and rejected by society. I might as well be some alien life form. And, if I had a dime for every time I have ben offered advice about supplements, yoga, qi gong, tai chi, Reiki, acupuncture and whatever new “complimentary therapy that Dr. Oz has been touting of late, I’d be one a rich gal.

People need to learn that not all disabilities are visible ones. Not all of us that have difficulty getting about are in wheelchairs. And, not everyone with life-altering conditions look or acts “sick.”

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I recently posted that received a course of TMS (transcranial magnetic stimulation) to knock back a major depressive episode.

However, I failed to mention that I experienced several other changes in symptoms  – symptoms other than the “F5 tornado.”

There HAS to be a connection between whatever the TMS does and the symptoms from which I experienced relief…which leads me to believe that the doctors are missing a serious connection between all my weird symptoms that make me the zebra I am.

So, what changed during treatment?

1.  Much fewer migraines….

2.  My odd and unexplained breast regrowth ceased – along with the pain that went along with the growth. (I had a reduction Nov 2013 due to the major and PAINFUL increase in size of my breasts from a 34DDD to a 34I in 4 yrs). My reduction was “supposed” to bring me to a 34C. HA. I quickly (and PAINFULLY) grew from that alleged size to a 34DDD in 4 months post-reduction. NOTE: all hormonal and endocrine levels always test “normal” – even though any bachelor’s level bio student knows endocrine levels can change on a moment-to-moment basis, the doctors that order these tests seem to stand firm that everything is “normal. Yeah…right. As the Ghostbusters always said – “we are ready to believe you.” NOT.

3. An increase in dreams. Some good – some bad – but all were vivid and memorable.

4. Longer periods of deep and restful sleep (I wear 2 “life trackers” that monitor sleep because of my weird sleep history (See my prior post on DSPS  – delayed sleep phase disorder).

5. A marked increase in sensitivity to medications: Clonidine (a BP medication), and MSIR (morphine sulfate immediate-release).I had to completely STOP the Clonidine as the effects that it caused during the TMS were debilitating – I literally would be unable to wake-up for 14+ hours if I took even half the smallest dose.) I take the MSIR for chronic back and leg pain I have had for 16+ years  – and the 6 surgeries I have had have failed to completely resolve the pain. During the TMS sessions, I required a lower dose of the MSIR to get pain relief, and, for the first time, I experienced side effects (a bit of nausea and extreme sleepiness) from my usual dose and had to reduce it by half.

6.  I had far less incidents of low blood pressure (associated with my Autonomic System Disorder – I have many posts and links to others’ posts about this condition on my blog.

What has happened with these symptoms since I ceased treatment one month ago?

1.  I am once again being awakened by migraines – with nausea, photophobia and positional increase in pain. I am getting 2-3 migraines per week.

2. My breasts are sore, lumpy and swollen. Gads, I hope they are not growing again. I just bought new bras because I though the growth had ceased.)

3. I am still dreaming, but less frequently. And they “loop” – much like they did before the TMS.

4. Problems getting to sleep AND staying asleep. (And, I cannot take any sleep aids due to the side effects I have from any meds used to sleep since this odd Autonomic Disorder I have kicked in back in 2012.

5. I have had to increase my MSIR dose back to pre-TMS Levels. I seem to have more pain in my back as well.

6. My BP and heart rate are becoming much more labile (variable) again. I have had to take additional beta-blockers recently to address the increase heart rate and chest pain.

Sooo….what is the connection? So far, none of my doctors have tried to solve this mystery. Why not?  A simple Google search can provide clues….

Which is what I did. It didn’t take long at all. I am an experienced researcher with decades of research experience so I know how to word my searches to get the best results. I am sure that diagnostic research was covered at some point in medical school.

What did I find out?  All of these things are connected in some way to DOPAMINE levels, and are things that are effected by what is known as the HPA (Hypothalamic-Pituitary-Adrenal) Axis. (Check out the link for hundreds of images from sources that could provide clues to my doctors….note the 3 words I used for the search…real rough, huh?)

HELLO? Can someone PLEASE tell me why a single medical professional cannot take this information and try to help me?  Doesn’t anyone care about me and the quality of my life???

This blog is a review of a review article published on Medscape (http://www.medscape.com/viewarticle/810602) titled: “A Narrative Review of the Impact of Disbelief on Chronic Pain.” (originally published in Pain Manag Nurs. 2013;14(3):161-171.)

{NOTE: The references I make within my review are to try to preserve the integrity of the original citations within the original article. I have not provided the actual references in this blog for the sake of brevity  – to further research my review of the original review, please see the original Medscape article and/or the original article in the Journal cited above.}

Firstly, I must offer kudos to the professionals that wrote the articles reviewed in the article – and to the authors of this review – for pointing out the bias, shortcomings and discrimination that occurs by medical professionals, friends, coworkers and family members all over the world when in come to the issue of pain. The focus of the articles reviewed were primarily female patients, but men certainly are not exempt from the treatment this review discusses.

Just last week, I sat in an office at Massachusetts General Hospital for over an hour, where a rather large poster exclaiming “pain is the 5th vital sign,” and how healthcare works must ask and patients must “speak up” in if they are in pain because they “deserve treatment.” HA. What a joke.  No one asked me about my pain. Did anyone there really care?  Doubt it.

Articles for the review published by Medscape were obtained in the usual way – though a search of the standard, well-known, world-wide databases of peer-reviewed medical journal articles. No Dr. Oz or WebMD rhetoric here. The main themes focused upon by the reviewers were:

1) the effect of feeling stigmatized – feeling “deeply discredited” (Goffman, 1963)  by not having one’s pain believed (via actual or perceived encounters). Sources of stigma include the medical professions, employers, the general public, family, friends and spouses

2) the experience of isolation (Walker, Sofaer, and Holloway, 2006; Clarke and Iphofen, 2008) because of disbelief of others that the patient actually experiences pain or that the person actually has a medical condition; and

3) emotional distress suffered because of the response received from healthcare providers to the patients’ admission that they were in pain (Allcock et al., 2007; Holloway et al., 2007, and many others)

The literature cited noted that when a patient says he is in pain, it exists (I am paraphrasing here).  It was noted that to have one’s pain disbelieved by one’s own physician is the failure to accept the account of patient as truthful. This opens up the doctor-patient relationship to distrust, suspicion, supposition and stereotyping of ALL kinds far too numerous to list here.

As far back as 1992 (before all the hoopla over the fear of the misuse of opiates was taking up loads of bandwidth, media attention and research monies)  a concept known as “delegitimization” was discussed in the literature by Norma Ware. She referred to studies of anthropologist Arthur Kleinman, who defined delegitimization as “the experience of having one’s perceptions of an illness systematically disconfirmed.” The Medscape authors point out that delegitimization and disbelief are not necessarily synonymous, as delegitimization can occur unintentionally, whereas disbelief is just that – disbelief.  The focus of the review article is solely on disbelief.

[Wow. How many of us that suffer from chronic medical problems have experienced THIS? Does it help to know we are not alone? Do we wish this Medscape article I am reviewing was published in the New England Journal of Medicine or JAMA and not some obscure nursing journal. HELL YES! Perhaps, then the medical community would sit up and take notice.]

Often, patients complaints of pain are chronicled by doctors as “psychological” or “trivial.”

It is noted that often the doctors disbelief of the patient’s pain compromises the accuracy of the pain assessment (which is supposed to take place as part of most exams, but my experience has been that the topic is rarely brought up at all).

Although the authors of the instant article wanted to include a complete social context for the patients experience of disbelief, i.e.:  within their workplace, among friends, and with family. The focus of the historical literature is on the consequences surrounding the disbelief of chronic pain and the ensuing implications this may have for health care professionals, and thus, the majority of the article maintains this focus.

[This is not entirely a bad thing – as we all know – if our docs don’t believe us, it is likely not many other folks will either. Negative attitudes about a patients chromic pain are often recorded in the person’s permanent medical record – which are passed doctor to doctor, and practice to practice, thus predisposing the patient to being looked upon with a raised eyebrow by any new healthcare professional from which she may seek treatment, often before she is even seen.]

As those of us with invisible, chronic medical issues can attest, one often is made to feel that you MUST have a real and legitimate (and visible) physical pathology.  The review article points out that the due to the lack of physical evidence, a psychological cause is often suggested. The immediate thought is the “if the cause is not in the body it must be in the mind (Lillirank, 2003),” leading the patients to be thought of as lazy or crazy. [Nice. I can just image what my doctors must think of me.]

One of the most interesting discussions I found in this review article was that of the effect of disbelief on self-identity. Numerous studies over the past decade worldwide support the profound impact that symptom disbelief has on identity and esteem. (Please see the original article, referenced above, for the citations to these studies.) Disbelief of chronic pain is prevalent amongst male medical professionals – researchers received some incredibly horrifying responses to queries about male doctors’ female chronic pain patients. Women were described as “fat and tearful.” attention-seeking, and “likely to have a psychological component” to their complaints of pain.” Researchers found that women were aware of these perceptions and to try to preserve a positive identity, often sought to underplay or overplay their pain complaints. Both strategies, however, fail to lead to successful and proper treatment for their condition. (The review also noted that men also experience negative treatment from their doctors upon self-reporting of chronic pain, but those studies oddly seemed limited only to veterans.)

Isolation as a result of being a chronic pain patient is far-reaching and invades every aspect of a person’s life. It is overwhelming to image how one doctor’s negativity and ignorance can proliferate throughout a person’s entire life as a virus, leaving that life in ruins.  Patients reported loss in “areas such as work, finance, relationships, identity, and hope.”  One participant captured the feeling quite well:  “you’re stuck at home, you become a prisoner in your own home. Your life is the pain is your cell” [I couldn’t have said it better myself.]

Often close friendships are lost, further physically and socially isolating the individual. We all know that pain restricts activity, which subsequently isolates people.  A male participant in the Walker et al. study sadly described how  he lost his relationship with his wife, stating: “my wife even turned on me, thinking it was all put on…from that point on I’ve just lived on my own.”

The lack of a medical diagnosis – a name for the pain and suffering the patient experiences daily – helps to keep the patient silent out of fear of negative judgement by others.  [This is why when we finally GET a diagnosis –  we are happy – we have been validated!]

It is so much harder to deal with daily pain without an emotional connection to others. As stated in the Medscape review,  “individuals subsequently suffer not only the pain itself but also the isolation caused by the hidden nature of pain. This unseen pain hides from others, what is for many, a major part of their lives.” This statement is a sad and pathetic testament to the lives that many of us are forced to live due to the insensitivity of the medical professionals we must turn to for help. As mentioned earlier, the medical profession is even more sensitive to anyone claiming “pain”‘ as a symptom due to the plethora of addicts misusing some of the drugs that unfortunately, some people actually DO need for their conditions. The Medscape review is full of examples of poor treatment of patients by medical staff, derogatory name calling (including “hypochondriac”, “drug addict”, “liars”), and the effects of the stigma suffered by these patients.

After experiencing disbelief, it has been reported that chronic pain patients often experience an even deeper depression, and some contemplate suicide. Oddly, there were studies that sought to refute this  – I found that odd. It seemed as if the medical profession didn’t want to take responsibility for confounding a condition that they had created and ignored.

Here is another brilliant quote form the Medscape review: “A failed battle to convince the health professional of the legitimacy of one’s illness can have painful consequences for the individual.” [I would have used MUCH stronger language than “painful consequences…”] Simply put, patients are left angry and hurt when they fail to receive a diagnosis. Often, those that pursue second opinions from other specialists due to the disbelief of the original physician leads to additional disbelief because of the refusal or hesitation of the first physician to provide a diagnosis, leaving the second-opinion doc to be “suspicious.” And thus, the cycle of stigma continues, and the effect on the patient becomes more profound.

[Does this sound all to familiar to anyone besides me?]

As part of the conclusion, the Medscape review article provided these “Recommendations to Health Care Professionals:”

1) Professionals need to be aware that using psychologic explanations of pain can be experienced as a denial of the individual’s pain. Caution must be exercised when using psychologic models with patients.
2) It is essential to be aware of the tension that patients can experience in the expression of their pain. Professionals might seek to openly invite patients to express their pain. This could form part of a regular assessment of the patient’s vital signs.
3) As the professional understands and affirms the patient’s story of their pain, both parties may develop a shared understanding, helping to address not only the patient’s experience of isolation but also the anger and frustration that can stem from not being taken seriously.
4) Empowering the patient with health care options could be an essential step toward countering experiences of helplessness, particularly given the lack of control many patients experience in the persistence of their pain

My requirement would be to make these recommendations mandatory for DOCTORS – not just support personnel. It is the doctor that writes in your chart  – and that chart follows you for the rest of your life (especially now, with the advent of the EMR). I don’t want derogatory comments and supposition about my condition permanently following me around. Would you?

What are your thoughts about these recommendations?

Would you add to them?  Would you change them in any way?

What experiences have you had with being believed about your chronic illness and pain by your medical professionals, your families, friends, coworkers and occasional parking-lot diagnostician?

(NOTE: no compensation was received from any of the companies mentioned in this post. I am just sharing what helps ME with others.)

I’ve been having a particularly difficult time with my SI (sacroiliac) joint dysfunction pain.

I spend many sleepless nights laying on tennis balls (yes, you read that right) and a creation I made of dog toys – these separate the joint and ease the pinching of the nerves, or whatever is going on when the SI is out of whack. The pressure also temporarily turns off the nerve signals to the brain – or that’s what I ve been told by the therapists that introduced me to this technique.

But, telling you this is not my reason for the post.

This link is!!!  The guy, Gary Crowley, of www.do-it-yourself-joint-pain-relief.com is a GENIUS.

The info he has on his website is more valuable than paying for one massage (but not a replacement for a massage therapist, of course, IF you can afford it), far better than trekking to PT 3 times a week (his videos had me accomplishing FAR more than ANY PT ever had me do in the 16 yrs I’ve had my SI pain), and best of all, all the techniques can be done at 3 a.m.! All by yourself (or a really understanding and empathetic friend)! Anywhere!

Please – if you have muscular or joint pain – check out his site!!

He describes all the anatomy in easy-to-understand detail in short videos – and for those that don’t want to watch the videos, the text and pictures are there on the pages under the videos.

He covers many pain maladies from migraines to jaw pain,  SI joint pain (YAY! – even uses a tennis ball!!),  to testicle pain and toe pain.

All you need is a computer (which you have if you are reading this)

and your hands (I use a small ball as I have hand pain issues),

and a tennis ball , or TennisBall

 

dog toy ball/soft ball (like these

WoolBalls

 

 

 

 

or heck,

source:corgibutts.blogspot.com

source:corgibutts.blogspot.com

even a rolled up pair of socks will help!!

 

 

 

I also use one of these TheraCane   — a TheraCane — to help me with some of the techniques.I just happened to have this in my closet for many years and figured that it would be a perfect adjunct for Gary’s pain relief maneuvers. And, it is!

The best of all  – Gary’s techniques – THEY WORK.

And, I get to get some sleep.

Hope this information helps even one person just a little bit!

 

 

 

 

 

 

 

 

Great assignment for today  – list 5 most difficult parts of your health focus, and another top 5 list for the little, good things (small victories) that keep you going.

So much has happened in my life the past month – this is a fun one for me:

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THE DIFFICULTIES:

1.  Finding a Pain Management Clinic that has doctors that are up to date on the best new treatments for chronic pain issued (RARELY do I find a pain management doctor that knows more about the latest and greatest than I do – because I suffer from chronic pain, I have a personal investment in my research. I get sick to my stomach when I go to see a new doctor, and I start to talk to him about the surgery I had in 2011, and s/he has NEVER even heard of the procedure – which has been around over 20 YEARS. SCARY. Do I want this person treating me with archaic knowledge. No.

2. Being reliant on medications that I must rely upon to get through the day, every day. Even though the percentages of people in developed countries in the world on daily meds are quite high (over 50%), it seems that people like to pretend they live in ivory towers and are better than everyone else and look down upon people that take medications – no matter what they are.These people tend to be in control of the lives of others: bosses, managers, etc. That makes it hard for people like me to get back to work – when we need accommodations to get to doc appts, or we need to adjust our hours due to our conditions. The ADA is there, but it is really not as helpful as it is made out to be. That will be the subject of another post. Just because we take a medication or we have a health issue does not make us less valuable as an employee or person.

3. Getting people to read my blog. During this challenge – I expected a huge response from my 150+ Facebook and Linked-In and Twitter friends. I have heard from THREE. Yup, 3. What do I have to do to get people to read my stuff and wake people up to the reality of poor health care by our PCPs, and even our experts? An article in the latest issue of Newsweek (April 23-30, 2012 issue) could have been written by ME – it opened with the story of a 38-yr old man whose PCP ignored his constant complaints of symptoms. The man researched his own condition on the internet and learned he had kidney cancer. He was dead 3 months later. (I will be writing a review of this article in a later blog.) How can I get this message out – things MUST change! Billboards? Planes with banners? The Goodyear Blimp?

4. Finding friends that are tolerant of my tenuous scheduling issues. Due to my multiple conditions, I do not know from one day to the next how I will feel, if I will be able to drive, if I will even be able to focus properly. Usually I can come around in 2-4 hours after I wake up – but that required people with flexibility. I have ONE friend right now that “gets” me and is still my friend. The rest, sad to say, have all drifted away, and some have posted snide comments on my FB pages about my issues “What now?” “Gross.” Some just don’t post anymore -even family. They are on FB  – I see them on chat – I see them comment on other’s posts – but all of mine are ignored. It hurts. And then, my doc gets after me for not being socially involved. Gee – how can I be when no one has the patience – or cares enough – to be my friend.

5. Not being a “productive member of society” when I used to work 60 hours/week, go to the gym 5 days/week, personal-train a few folks on the side every week (I was a personal trainer in weightlifting for many years) and have a social life on top of that. Now, A good day for me is getting up, emptying the dishwasher OR taking out the garbage OR doing laundry. I feel very useless. I feel like an “in-valid” on Gattaca.

Image:

THE THINGS THAT KEEP ME GOING (that keep me from giving up):

1. My husband, Kurt, and his belief that I do have value, even in my current state.

2. Sharing my life with my parrots, watching with awe as they communicate with me and Kurt, as their personalities develop, knowing they will be with me for the rest of my life. I am so thankful to the Universe, to Spirit, to God, for giving me the opportunity to share my life with such amazingly intricate and specialized sentient beings.

3. Finding my new counselor, energy psychologist Fern Ross Israel, who has helped me more in the short time I have been seeing her, than ALL of the counselors I have seen since I was 16 yrs old. IT was serindipitous how I found her – so I knew she was the right person for me to see. The Universe has truly gifted you, Fern.

4. Ben & Jerry’s Limited Edition flavor available at Target ONLY – Brownie Chew Gooder. Hands-down, the most PERFECT ice cream flavor ever to come in one carton. Even when I don’t feel well  – it is the only thing that I can eat.  God Bless you, Ben & Jerry!

5. Polymer Clay. This versatile medium has enabled me to express myself in a variety of ways. Too bad the psycho-mommies of the world think that everything was created for their kids – and they forced the companies to change the formula. This WAS a serious art material, not a kids toy. There were kid’s clays already. Now, I have to spend 5x what I would have had to spend 3 years ago to get a quality art product. Bitter am I at these mommies – yes. But, I have stockpiled enough product via free Amazon certificates I earn through the completion surveys online. And this makes me blissful.

Who would I want to have dinner with, and why?  Anyone, living or dead can be there. In no particular order, I present my dinner guests:

1  . Dr. James Watson, of DNA fame, not Alexander Graham Bell’s Watson. WHY – the dude is smart!!. He is still working, connecting DNA disasters to common aliments, proving that much of what we suffer with is predetermined by our genes.I had the honor of meeting him once. Wow.

2. Dr. Aaron Filler, from Santa Monica CA. An extraordinarily  intelligent man with proven theories and ideas that the medical community needs to sit up and pay attention to.  He invented an imaging technique that proved to all the naysaying doctors I had seen that I WAS RIGHT about where my pain was originating and that I had a massive area of congealed nerves that wasn’t working right, and had managed to kill off a piece of a muscle in my buttocks. Oh – and this problem was due to genetic defects n my piriformis muscle and sciatic nerve. Proves we are not all alike on the inside and that pigeonholing just makes matters worse. Look how bad I got being pigeonholed for so many years. This man serves to be on a postage stamp.

3. Every party needs comic relief. I choose Louis Black, a man familiar with the perils of aging, and someone who would be able to crack jokes appealing to all present.

4.    My husband, Kurt, whose wise ways, sharp wit and insight have kept me sane and alive for the past ten years.  He deserves to be in the presence of such greatness, since I consider him to be one of the Great Ones himself. With the level of intelligence he displays when figuring out the massive amounts of problems life tosses our way, I wish that I could have him bestowed with a J.D.  so he could right all the wrongs we have encountered the past several years.

5.  Richard Branson, an outlier to most, but an exquisite thinker beyond his years. Maybe with the brain trust I have created could they come up with something that could help people like me to live a normal life.

But, I need a 6th…

6.  I couldn’t leave out Steve Jobs. Whatever was created by the other 5, if they did in fact come up with an answer to chronic pain, Mr. Jobs would finesse, and make it so appealing, that even the closed-minded doctors in Boston would see the light.

So pull up that extra chair for Mr. Jobs, garcon, we’ll be here awhile!

 

 

 

 

The assignment today is to write about what our “dream day” would be like, if it ever happened.
I am not feeling well today so I dunno how this will go.

I would wake up, and not be apprehensive about how I may feel.
It would be at a time society considers “normal” (the DSPD I have keeps my schedule set: 230a-11am is when I sleep. If I deviate for several days, I get physically ill.)
I would be able to get up out of bed like a normal person – no burning, deep aching pain.
I would walk to the train to get to my job (the one I don’t have because of the pain I am in).
I would work in the medical research field – my dream job of researching the CAUSE of illnesses such as dementia and Alzheimer’s (I worked I drug discovery as an associate scientist before the pain ruined everything)
After a rewarding day at work, I would go to a power yoga class, like I do 3 days a week. I wouldn’t worry about how bad I may feel afterwards. I could go-do my best – and enjoy it!
I would then go home to my husband, Kurt, and we would cook dinner together.
Then we’d hang out together with our parrots and watch “Storage Wars” or something fun we had Tivo’d, then we’d go to bed. I would fall asleep easily, without anxiety, without worry of how much pain I may have later that would wake me up.

Notice I didn’t take a single medication. For anything.
I had no pain, other than the good kind of pain you have after an exercise class.
I worked. I have a job.
I have energy to work, do yoga, and cook dinner.

I would be so happy if one day, this dream could come true.

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