Posts Tagged ‘autonomic nervous system disorder’

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.”

Made by me on someecards.com

Made by me on someecards.com

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???

The total BS that these of us with “invisible illnesses” must go through is completely WHACK.

My favorite blogger, RustyHoe, explains it the best!

http://bobisdysautonomia.blogspot.com/2013/am i sick enough for you?.

Ready, enjoy, and laugh your arses off at Michele’s unique humor about a debilitating illness. (Warning: no unicorns will be found on her blog, either. Just the ugly, humorous truth!.)

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Photo: Smiling Dragonfly By:capturedbylori

I’m laying here, unable to sleep as usual, thinking about how hard it had been for me to find doctors that want to be diagnosticians – doctors that want to try and help me figure out what is wrong with me – doctors that want to think outside the box (not horses, or even zebras…I’m talking EMUS!) – doctors that think that I have some worthwhile life left to live at 49.

Yes, I have a great PCP. But I’m new to her, and in the past 6 weeks we have had some very lengthy email exchanges. She doesn’t quite “know me” yet – I get the feeling that she’s still trying to navigate my moods (which range from Pessimistic – wallowing in the Pit of Despair, to Frantic – being consumed by the Pit of Despair, to Optimistically Pessimistic – I am very familiar with the shit in my Pit, and i DOUBT that the Thing outside of my Pit has any worth.)

My husband thinks I will scare my sweet PCP away, Evil Thing that I have become…thanks to my untreated ANS dis-whatever!

“We” cannot find doctors to treat me. If “we” do, there are 4-6 month long waiting lists, appointments are triple booked….each body part is treated by different specialist, and of course, none of them communicate with one another. How delightful! This is why I need YOUR HELP. With YOUR HELP, I will start a webpage that lists all the doctors that have successfully diagnosed and treated every dysautonomic, spoon, POTSie and anyone suffering from any incarnation of an Autonomic Nervous System Disorder/Condition/Dysfunction ever known.

I know this has been tried before on certain social media sites – but something needs to be done NOW!

I am at the end of my rope.

No human being should have to go through the humiliation and agony of being misdiagnosed and tossed aside by physicians as if you were a piece of trash. No one.

I will make a webpage that can guide people to doctors that specialize in ANS disorders that will help diagnose their symptoms and not placate them with platitudes and frivolous dx’s of “anxiety” and “dehydration.”

Now that I think about it – I will make a webpage with recommendations of ALL the fantastic, helpful, and understanding doctors that have been helpful for the conditions that I have suffered with. 

If you hear me – if you understand this frustration and have sat in the bottom of the Pit of Despair thinking there is no way out…… Then PLEASE share your doctors’ demographic information with me so that I can create a true HELP Page for people like us…

Just think of all the people you will be helping…and possibly saving…

THANKS!!

Vers

 

I am so honored to have received the Versatile Blogger award from Christine, aka crshore, a blogger who is from the area I consider to be my hometown area, Southeastern Connecticut. http://boredsick.wordpress.com/about/.

Here are the “thank you” rules:

*Add The Versatile Blogger award photo on a blog post. [check]

*Thank the person who presented you with the award and link back to him or her in your post. [check]

*Share seven things about yourself. [check]

*Pass the award along to the bloggers you have recently discovered. [working on it]

*Contact the chosen bloggers to let them know about the award. [working on it]

Here are the seven things about myself:

1. I have a very strong desire to write a book about my life. I can’t decide what the focus should be, but I want to write something that inspires people to be the Phoenix I have had to be over the years.

2. I ADORE birds. I own four: a citroen cockatoo, Topaz, (currently being referred to as the Jodi Arias of the ‘Too world as she can be a bit evil towards me at times), a Severe Macaw, Q, who is a fantastic talker, and plays with large sticks and dogs toys, and makes it absolute dream to share life and a home with (especially when he whispers “nite nite baaaaaby burrrrd” to us evey evening in about 50 different ways), and 2 adorable parakeets that keep my condo filled with joyous sounds all day.

3. I have had several professional occupations: a police officer, a paralegal, and a biotech scientist. I hold three and a half degrees in Psychology, Sociology/Criminal Justice, Biology and Biotechnology/Clinical Investigation. I last worked in 2009, right before my mom passed away, my back problems became worse than they had ever been before, and I was unable to keep working in the biotech industry since the medications I was on for my back (and autoimmune issues) at the time interfered with the computational areas of my brain.

4. I never wanted to have kids – ever. I made the decision on a Spring day in 1968, standing in my front yard in Annapolis, MD. I have never had any regrets. This decision is no way was related to abuses I endured at the hands of my biological father, nor because of the inactions of my meek and likewise-abused mother.

5. I strongly believe that my health issues are directly related to the trauma I suffered from the time I was less than a year old through age 15. Research has proven that the structure of the brain and DNA can change as a result of repetitive, childhood abuse, and I believe that I am living proof. The several batterings and rapes I suffered throughout my teens and early 20’s has probably just added to my damages.

6. I attended nine (9) different grade schools before I “graduated” a year and a half year early in 1980 – missing a total of three years of grade school between ages 5 and 16. I immediately began attending Pensacola Junior College, grading with an AA degree in 1982.

7. My medical advocacy adventures beganwhen I used to sneak into the medical library located in the hospital across the street from PJC to research on some of the symptoms of lupus and migraines I had been suffering with since age 12.

I cannot come with fifteen (15) bloggers to bestow this award upon – I don’t read that many blogs. Of the blogs I DO read, the deserving ones are:

Rusty Hoe: http://bobisdysautonomia.blogspot.com/ (my idol from OZ!)

The Queen: http://queenofoptimism.wordpress.com/ (although she has been conspicuously absent for almost a year…I miss her insightful posts!)

Christine: http://boredsick.wordpress.com/about/

Heather: http://strengthcourageconfidence.com/

http://chronicchroniclesblog.wordpress.com/

Lette: http://irishdysautonomia.wordpress.com/

Lindsey: http://dysautonomiac.com/

 

 

April 21 NOTE:

Seems like these “awards” are meaningless- EVERYONE GOT ONE. just like kids in sports these days – everyone’s a winner! (gag me)

Day14

Just a shout out to my absolute most favorite health blogger – check it out for a good read!!

LivingWithBob

This is the header used by “Living WIth Bob” on her Blog. I hope that I won’t burn in hell for using this here as I am solely using her logo to promote her blog, not in any way to covet the Dorothy shoes….

Living with Bob: Gosh darnnit if this isn’t THE best health blog I’ve ever read. Michelle from OZ ROCKS her blog with lots of fun pix, realism and good ol’ sarcasm. She documents her struggles with her autonomic disorder which is darn close to what I experience. If anyone wants to know what life with an autonomic disorder (“dysautonomia”) is like, this is THE place to go and learn. I’ve even given her link to my doctors (so far, only one has checked it out). It should be MANDATORY reading for anyone that treats people like us – people with this life-robbing mystery illness. I can’t give you enough love, Michelle!  You are MY hero health activist!

One of my favorite blog posts by Michelle: How to Spot a Sick Chicken. Enjoy!

So, I’m getting ready to go to bed last night, and my email notification “dings” on my iPhone.
It’s my doctor (yes, I scored! My PCP emails me!!!) with my most recent blood test results.
In addition to my usual bizarreness of positive autoimmune tests, an elevated prolactin level (thank my pituitary tumor for that) – I’ve got diabetes!!! Little skinny ME has an A1C level that tips me into the world of diabetes. Despite eating quite well, save for the Coke Icee once a week as a treat, somehow I’ve ended up with the most common health condition in the US.
My question is this: we know diabetics often develop ANS dysfunctions, can an ANS dysfunction CAUSE diabetes?
Or this: my blood sugar levels have been a teensy bit high for 2 years (although nothing to make any if my docs say anything to me about it) – could I have diabetes as an underlying condition that has caused the ANS dysfunction?
Or even this: Could my ANS dysfunction have caused enough damage to my nerves that i have end stage organ damage already?
Is this why my feet are numb and tingly now? Is this why parts of my hands and face are randomly numb.
Dr. House – where the hell have you gone????

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