Wednesday, January 8, 2014

I'm Back! The slightly revised, wonky, messed-up version of me anyway

I have not plucked out so much as a word on here in months. It had been a few before that since I actually wrote anything about life. And what a life it has been since then (May). Wow, 8 long months ago.

Now that I have settled into my new normal, which consists of brain mush "fog", pain, dizziness/lightheaded, and on and on and on, I think I am finally able to step back in the blogging world again.

I just realized, in the last two short paragraphs, that this spell check on here is going to get a workout of enormous magnitude. I so wish there was a grammar check as well. Do you know how much brain power it takes to get all of those commas in the right place? Let's not even go there. I would love to debate whether or not it is correct to use the ________ comma while blogging, but I can't even remember what the name of it is so let's just skip that. (Hold on)

Okay, I am back. I had to go ask my husband what that comma is called. The Harvard comma of course. I had Jefferson in my head- close enough right!?

Alright back to all seriousness. I have had oodles of new health issues pop up and old ones worsen over the last year. Along with them came many doctors, tests, and more questions than answers for much of that time.

I had been diagnosed with Joint Hypermobility Syndrome (JHS) back in September 2012, but at that time I was only having aches and pains here and there so I did not really dig into what it all entailed. As the name implies, it sounded like it involved the joints being hypermobile and that could cause pain over time. Well that is only touching the surface of this syndrome.

Syndrome is a word that I have come to despise. How many syndromes can one really have? Haha, many! And I seem to have my fair share of them.

My goal in blogging about my health is not so everyone can pity me or feel sorry for me. That is the last thing I want. As I have researched all of the syndromes and diseases I have either been diagnosed with or have though to have had, there are very few blogs/resources of how it is to live with these chronic invisible illnesses.

I can find medical papers explaining them, but how they affect day to day life is a whole 'nother story.

I also hope to bring awareness. Let me say that a few more times just for good measure- Awareness, Awareness, Awareness.

Most of the diagnosis that I have are on the rare disorder/disease list, but it is coming to light in a small portion of the medical community that they may indeed not be rare, just VERY underdiagnosed.

So what are all of these rare things going on? I will leave the details to many posts to come, but without further ado let me introduce you to the nasty horrid beasts that have dug their claws in me and decided to stay FOREVER!!

First off there is the Joint Hypermobility Syndrome/ Ehlers Danlos Syndrome Hypermobility Type, which I will referr to as JHS/EDS from now on. Along with this comes a myriad of issues including (but not limited to):

  • joint pain/sprains/subluxations/dislocation
  • muscle, ligament and tendon pain/strain/tears
  • neuropathic pain
  • fatigue
  • osteoarthritis/osteoporosis
  • disc problems
  • dysregulation of the autonomic nervous system- dysautonomia
  • circulatory problems
  • many varieties of headaches
  • eye/vision problems
  • upper and lower digestive problems
  • abdominal wall tears
  • Genitourinary problems
  • increased adrenaline production
  • sleep disturbances
  • and on and on and on
I just touched the surface of the manifestations, but did you notice the repeat of the word PAIN. The reason is, this inherited connective tissue disease affects collagen, which is the most abundant protein in our bodies. This directly or indirectly affects every system in our bodies. Yipee!! (Throw in a boat load of sarcasm on that.) Collagen is what holds us together or in my case-- not so much!

Second on the list is Postural Orthostatic Tachycardia Syndrome (POTS) which is one form of Dysautonomia. I absolutely love the idea another blogger with POTS came up with by naming her POTS, Bob. So much easier to spell with a foggy brain and hideous word recall. I so wish I would have thought of that first. 

POTS is my worst new (diagnosed a month ago) best friend that never leaves my side, doesn't sleep and has a split personality from hell. Maybe I should name her Sybil. You never know what is going to happen from minute to minute once your life gets sucked up by this beast. 

As with JHS/EDS, POTS sounds pretty to the point. Seems as though it should be a high heart rate (tachycardia) with upright position change. Huh! Throw that word syndrome on the end of there and once again the sky (although it is usually the floor) is the limit. 

Here is a list of loveliness that "can and will be used against you" if you get The POTS, as my oh so funny husband calls it. Ready?
  • DIZZINESS
  • fainting or near fainting
  • impaired consentration and memory - Brain Fog
  • trouble finding the correct word(s)
  • chronic fatigue
  • headaches/migraines
  • blurry +/or tunnel vision
  • nausea/vomiting
  • abdominal pain and bloating
  • diarrhea/constipation
  • heat/cold intolerance
  • issues regulating body temperature
  • shakiness and weakness
  • nervousness/anxiety
  • chest pain
  • palpitations
  • shortness of breath
  • ringing in the ear(s)
  • neck pain
  • exercise intolerance
  • insomnia
I think that is good starting list to give you a hint on why I love this SO much. How can I not, right!? 

POTS is an abnormal functioning of the Autonomic Nervous System (ANS). The ANS takes care of everything for us that we do not have to think about like our heart beating and breathing, digestion, etc..  I will get into the specifics in later posts, but for now POTS is diagnosed when you have an increase in heart rate greater than 30 beats per minute within 10 minutes of changing position from lying to standing -usually done with a Tilt Table Test- along with the slew of the above mentioned symptoms that go along with orthostatic intolerance (a fancy way of saying not tolerating being upright).



I know that for me standing up is a pretty important thing most of the time. I have learned not to take it for granted. Standing for an extended period of time - I'm talking minutes not hours here, without feeling like I am going to faint, puke or just flat out die, is no longer happening for me. 

There is a whole lot more that comes along with having this new best friend. If it was only the standing thing. Remember I said she NEVER leaves my side and never sleeps. Even when I am sitting down and laying down things do improve, but I am still never without symptoms. Here is where that split personality comes into play- symptoms can come and go and change and on and on from one minute to the next without warning. 

There is really no nice way for me to put it other than it sucks! (big fat gorilla turds)

Oh I wish I was done now, but oh no there is more. Yeah! This particular one is "yet to be determined". Back in May when I felt as though I was a victim of a head on pedestrian collision with a derailed freight train, I was sent to a neurologist and was thought to have MS. Three MRI's later, it was determined I did not have the typical brain lesions associated with MS, but I did have a couple of lesions on my thoracic spinal cord which were thought to be a spinal vascular malformation (AVM). 

Off to the see the head vascular neurosurgeon at a hospital about an hour away. He wanted to do a spinal angiogram to find out exactly where it was and then go in and surgically remove it. I questioned him about the probability that there was really something there - not real anxious to have them messing in the spinal cord if not Holy Cow necessary- and he assured me that it was there. 

I had the lovely angiogram done and the neurovascular interventional radiologist said he did not find an AVM. Hmmm. He said he did not know what it was (on my spinal cord mind you), he just knew what it wasn't. Now isn't that a breath of fresh air- NOT. 

So, I am going to have a repeat MRI at the end of the month so my neurologist can take another look at things. If it seems to be getting worse instead of better the vascular neurosurgeon wants to repeat the angiogram. Well he actually already plans on repeating it next month, but I will not have it done unless the MRI shows a reason to. My neurologist here at home agrees with my decision. 

Did you say you wanted to hear some more symptoms? Here you go. These seem to be coming from the "I don't know what it is" on my spinal cord.
  • Left leg- weakness, spasticity (tightness and unable to straighten leg out), insane muscle cramps, off and on numbness/tingling, pain, hyper reflexes 
  • low back pain
  • Both legs off and on -feel like they are asleep, waves of electricity running through them, decreased temperature sensation, sharp shooting pain in feet
  • Urinary hesitancy
I can only imaging the picture you have of me in your mind. It probably goes something like this. Disheveled, stinky, pajama wearing neurotic who periodically gets out of one chair to walk to the next one she can find to sit in quickly- while dragging along her unruly leg -all the while squinting one eye to try and focus through the insane dizziness, possibly holding chest from pain and panting trying not to puke or pass out. 

Now that is a pretty picture. Okay that may only feel what it is like for me. The truth is- there is a reason that EDS and POTS are called invisible chronic illnesses. I may look perfectly normal to the outside world- that may be stretching it a bit, but you get the point. It may take a lot of effort to shower (rest), comb my hair (rest) and get dressed (rest).
Most of the time I only do things I am able to at that particular time so unless I am piled up on a display of lightbulbs 15 feet inside the door of Walmart or standing in the checkout line pale, sweaty and with purple feet- no one may know how much we all suffer with these Syndromes. 

Hopefully it did not take you two days to read this like it did for me write it. 

I really just wanted to share what has been going on and let you know that what I am blogging about  will be changing to include living this new life with these rancid new friends of mine. Of course I am still homeschooling these two little peeps so that is one thing that has not changed.  

I feel very fortunate to have been able to be diagnosed so quickly, as many people wait years for answers and are blown off by doctors as being a psych patient, hypochondriac, or attention seeking and never taken seriously. I hope the more information that gets out and shared will people a little more aware and understanding of what people with invisible and chronic illness are living with.

If you have made it this far you are awesome and surely deserve some chocolate and fresh coffee. Thanks for listening to my ramblings and I hope you come back and share in my chaos. 




2 comments:

  1. OMG, zero comments?! How is that possible? I read the whole thing and I'm very sorry you're dealing with all of this. How have you been able to homeschool while experiencing all of these symptoms? I bet this is one time where the flexibility of homeschool scheduling is much appreciated. Sending happy thoughts your way.

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    Replies
    1. Thank you for your kind words, Beth. You are absolutely right about the flexibility of homeschooling. That is what has make it easier for us.

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