Living my life through a window’s view..

Hubby made a comment yesterday about one of his work ladies bringing her baby to work. He got to hold and cuddle the little one and he was geeked about it. It stung. I realized I’m starting to feel insecure and jealous and I don’t want to be that person. I’m missing out on even the simple things in life to bring one some happiness. I feel trapped behind these four walls. I see life passing me by and I’m only in my early 40’s. I should be living it up before my 50’s strike. I’ve been ill since my early 20’s with periods of time where I was managing ok but the last, going on 6 years now, have only been a downward sloap with no real periods of remission.

I have so many health issues that they seem to feed off each other, one flaring up the other and making things worse. It’s embarrassing how many conditions affect me. I don’t want to be that person. I am that person. I hate it.  I’ve always wondered deep down if I had never joined the military, if I’d be much healthier today. That was the catalyst. I’m certain of that.  I was pretty healthy before hand and it didn’t take long to start attacking my body, shortly after joining. Was it the vaccines? The abundance of physical activity? Some other kind of exposure? I do know I’m not alone in what I suffer as there are so many veterans going through the same. Maybe we all have a certain genetic disposition that caused us all to express certain genes that might otherwise have remained dormant? I have found that many of us are hypermobile. Many have gone on to be diagnosed with ehlers-danlos or hypermobility syndrome. Is that the link? But not all of them have that.

What we have in common is ME/CFS, fibro, IBS, chronic headaches, and unexplained neurological signs and symptoms. There’s more but that’s what the VA will compensate for. A lot of us also have GERD, other stomach issues, IBD (which they deny the link), migraines, and other problems involving our joints and muscles. Various cancers run higher in veterans as well as MS, parkinsons, ALS, and other problems. I can logically understand arthritis and wearing and tearing of our joints due to all the physical requirements. That makes sense. But what about the rest of it? That’s where things get murky. What do we all have in common? Why do we all suffer so many similarities? Even if the general population were to start having the same health issues at the rate of veterans, we were the first. At least that I’m aware of, so it started with us vets.

So many studies to get to the root of the issue and yet most of that money seemed wasted on studying stress and the human body. Not all of us were put under loads of stress. I guess putting the focus on stress makes it easier to blame the mind that any physical exposures we might all have in common. No government would want to admit to that, but it’s what most of us are thinking.

We will probably never get any real answers. At least not while still walking this earth, or in my case, watching life pass me by out the windows of my home, stuck behind these four walls, and sinking into a funk, wishing myself well again. You can only hold on to hope for so long. As the years pass by, that hope gets heavier and heavier to hold onto. Trying to keep a positive mind frame but when you’re riddled with pain that’s inadequately treated, it has a way of making hope, that much heavier.

Genetic testing! Zebra results soon

Well, I’m finally getting tested for ehlers-danlos! Excited to know if that’s the cause of my Zebra self. My genetic counselor is also running another type of panel on me. He said my symptoms remind him of….Dystonia.  F*ck. (scuse my language). I had run into that word before and felt it was reminiscent but wasn’t fully on board due to the literature not quite matching up with my symptoms. So I joined a Facebook group for patient experiences and sure as shit, it fits. My son is also showing those same signs. (disgruntled angry mom about this).

Those crazy vibrations? Well, it seems common in this group. My muscles are also pretty tight for being on bed rest most of the day. I should have atrophy, I don’t. Guess those vibrations are keeping my muscles from completely relaxing so I’m exercising without intent, so it seems. I’m really nervous about this one as reading about it sucks. I don’t think there is any family history of this. It also might not show in my genes so if it doesn’t, off to a movement disorder specialist to get checked out. Knowing that my son is exhibiting the same signs, I feel strongly, it’s in my genes.

I got my periodic paralysis panel back and they found a VUS. Variant of Unknown significance. Typically they don’t allow free family testing for a VUS but they are studying this condition and since the frequency was non-existent, they are testing my family. My genetic counselor said the lower the frequency, the higher the odds for a pathogenic mutation. Makes sense.

So maybe soon, I’ll have answers as to why my body has fallen apart and why I am not so normal. Maybe the physical aspect of the military along with the exposures caused it to express? I never had signs of anything during my childhood. Then maybe the constant physical therapy kept triggering it? I guess that part doesn’t make sense as obviously it was triggered to cause physical therapy. Still learning. Still wanting to know WHY I was so healthy before I joined the military and yet so ill upon leaving it. Why!? No one else in my family seems to suffer like I do. They’re all healthy in my direct family line. Vaccine reactions to the onslaught of toxic goo given to me all at once? My body doesn’t process things normally. Anthrax vaccine? Some mystery experiment done on me?

I have so many medical conditions it makes my head spin. It’s also extremely embarrassing to list them all.  ME/CFS, Fibro, Migraines, tension headaches, IC, UC, IBS, POTS, autonomic issues, mild emphysema, possible HKPP (I’m almost certain I have this), and others…

The wait sucks. I’m waiting. Will update…. soon(?).

Invisible Illness…

The pain is there, inflammation too, but doctor’s are clueless, what should I do?

I have an invisible illness that has taken hold, slowly crippling my way of life. I had my dreams ahead of me, a future to look forward to.  I was in the gym getting myself in shape, discovering that I had a love for running. I was studying for the LSAT, getting ready to start a new journey, one that I had been looking forward to for many years. Master’s degree down and Law school in my future, perfect for my type A all in type of personality. I’m no wimp.  I like to get my hands dirty. In fact, I’m a bit of a micro-manager.  I rather do things myself, I have high standards, no one will do it as well as I could.  But all that has changed. I’m not who I am anymore. I have an invisible illness.

Probably one of the most difficult things with an invisible illness is not what I suffer with daily, but the doubts in my doctors eyes, the suspicion, the questions. How do you prove what you feel when pain can not be measured? When holding up your phone in bed causes your arms to throb, cleaning causes your body to flare up in pain, weighed down by invisible weights pulling you towards the floor. Just walking up the stairs with those heavy weights is enough to make me pause and rest, draw in my breath, and gather my strength.  Noises smothering you till you just want to crawl in a quiet dark hole and let your mind be at peace. Movements overwhelming, filling your vision till you just want to shut everything out and rest.

I’m hypersensitive. I feel every ache in my body, my bladder only slightly filled yet the sensation is every present, a tiny gas bubble searing it’s way in my insides, my heart beating against my breast, a tiny hair irritating my cheek, the way my breast squish against my bra, the artery pulsating in my stomach, my dry eyes, painful joints, aching muscles, horrific stomach pains day in and day out. I feel everything. Surrounded by a sea of sensations waiting for my next escape. The drugs dull the pain, the sensations, the heavy fatigue, pushed at bay for a few hours relief until the effects wear thin and the feelings return.

I have an invisible illness, one shared by many but never the less, ignored and pushed aside, treated as though it is a disease of the mind and not physical, physiological or neurological in nature as the symptoms suggest. Remember when epilepsy was a mental illness, locked up in an institution because doctors didn’t know how to handle what they couldn’t measure?  History repeats itself.  Rather than telling the patient that technology has not caught up with the process, they blame them instead for PTSD, anxiety, somatization, and depression. Anxiety may be my cross to bear, but logic rules my mind. Can they not handle defeat? Do they not know that they are not infallible, not all knowing and all mighty?

One day they will look back and know.  They failed us.  They denied us, ignored us, and left us to rot. They had no answers, but they will…one day.

 

Please share, comment, or like on this post.  Most of my posts are just for myself as writing helps with my frustrations, but I think my story represents a large number of people in this world.  Even a quick comment to say hello!  I just want to see if this post is being seen, if you can relate.