It's the polite thing to ask when you see someone whom you know has had a rough go, been sick or had repair work done, it's an ice breaker & habit ingrained in us..... buuuuuut it can be awkward can't it?
I am 4 weeks post op from my hysterectomy & prolapse repair surgery. At this point I have started to venture out of the house more, Wayne has gone back to work and I'm attempting to get a new routine established here at home, run errands, go to 5 million appointments & do all the mom things.
Going out in public again feels great but sometimes when asked how I'm feeling or how I'm doing, I can't decide how to answer. I know I'm supposed to politely answer with Fine, Well, Great, Good, Okay, or even, I'm getting better or I can't complain too much. Usually I answer with one of those because it's just plain easier and less awkward, however some days I am none of those. Some days are still rough. Some days I'm down right mad at my current situation and the still unknown aspects of it. On those days, here's what I'd like to say:
I'm mad.
I'm in a place.
I'm in a mood.
I want to lash out.
I want to tell off the person I just had to put up with in that office.
I want to load up & go to where the sun shines but the temp stays between 55-85.
I want to kick and scream and stomp my feet and slam the door like my daughter's epic Hissy Fits.
But, how would you respond to that? What do you say when someone doesn't respond with the cue card answers they are supposed to? And then of course the next question would be WHY!?!?!Well dear, how much time do you have? Because I love me a good vent session & I'm forever short on adult conversation opportunities for leisure....I'm game, but are you? You're not, not really. Nobody has time for that.
Well be warned, I might start being brutally honest in my responses just for my own amusement.
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| working on it |
If I don't and I answer cue card, then I may appear contorted, stand offish, short. I don't mean to, but it's me deciding not to watch you squirm with the truth. Your welcome.
You see....
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I have just clawed back from one ordeal to be sunk by another. I knew it was coming, but darn, seeing the door coming slamming into your face doesn't make it hurt any less does it?
Let's start with what is okay, fine, good even.....
The hysterectomy recovery feels fine, it truly does. No cue card. I feel it has healed great.
The prolapse repair..... not quite as fine. More of an okay. The stitches aren't quite where I thought they'd be & there's more of them than I anticipated. Due to where they are located and how they sit, they are constantly ANGRY. Walk too much, sit too much, reposition how you are sitting, scoot over, sit up in bed, go to the bathroom.....Angry Stitches. The repair involved removing tissue, stretching tissue around that & sewing it back together. With lots of thick stitches. 
I refer to them as my FRANKENSTEIN STITCHES. My Frankenstein stitches were very painful very often because of constantly being agitated by me being a living being. Finally this week they are feeling a little better. I ha
My doc ordered a CT with angio to look for pulmonary embolisms. It was my first CT. It was interesting. The IV contrast made your body feel a bit on fire, and made you feel like you peed your pants. She did warn me about that thankfully. I may have messed up when to breathe and when not to. I was struggling to actually get full deep breaths in my pained chest anyway. The tech was patient with me.The results did not show any PE's or a number of other things that apparently are looked at:
Findings:
The pulmonary arteries are adequately opacified. There is minimal patient breathing motion within the left lower lobe. There is no acute pulmonary thromboembolism.
The cardiac size is within normal limits. There is no pericardial effusion. There is no mediastinal or hilar lymphadenopathy. There is prominent soft tissue within the anterior mediastinum consistent with residual thymic tissue. There is no axillary lymphadenopathy.
The trachea is patent. There is no pneumothorax. There is no focal pneumonia. There is no pleural effusion.
There are multiple hypodensities within the liver which are likely small cysts. There is no acute abnormality within the visualized upper abdomen. There are minimal degenerative changes of the thoracic spine.
The absence of PEs was a relief, but here we are weeks later and it's still there. Frustrating. We are going to continue with iron supplements to keep rebuilding from my heavy blood loss at surgery and see if that makes a difference. I'm beginning to wonder if it's just another thing I have as a part of the autoimmune symptoms I deal with. It kind of fits the description of "girdle pain" or "MS Hug".
Fast Froward to my next appointment 4/15:
I have tried most of the main medications for it since being diagnosed in January of 2017, after ignoring it for the first 3 years of zingers I felt and eventually being unable to ignore the intensifying flare ups. I don't even "have it bad" yet. I am part of a support group of people who are suspecting they may have it to people who have had it for decades. It's progressive, so over time it will get worse and harder to manage, unfortunately. The group is an amazing source of what's out there, what has worked how for others and what else might be an option. They answer so many questions and provide relief of knowing others out there GET IT when it's something others can't see, don't experience, can't fathom, probably have never even heard of.
.....as Wayne pointed out: "Your Trigeminal Nerve is located all in your head." -true story
More details on Trigeminal Neuralgia can be found in THIS EARLIER POST <CLICK>
If you recall from the above linked post, I have a broken crown on the side of my face with the TN which my dentists don't particularly want to touch again without a neuro consult & a plan in place for before, during & after. We've discussed knocking me out for during, which I welcome, but AFTER is the real issue. After there will be weeks or even months of pain triggering a flare up of the TN. That is the part that is difficult to endure, difficult to manage, nearly impossible to avoid. It was suggested I go to a Neurologist for a consult on how to proceed for dental care. I decided there would be no better time as I have already met my deductible & we could discuss my annoying autoimmune symptoms & go ahead with testing measures for it.
It took 9 weeks to get into the neurologist and probably only because I called and pestered the reception desk, left messages & got a call back. Normally they are booked 4 months out.....let me tell you my neuro was not shy in mentioning that, nore acting in a "take it or leave it" brash way.
I did my research before going in to know what to ask about what and why.
It's been 5 years of journaling every quirk that's presented & knowing what the combo can mean.
It's been conversations with my family practitioner about what to do about it and when, how to test, what can be done, how long we can wait.
I have weighed all of this and only worked myself into the decision of going in because of the semi aligning of the meteors that be (opposed to stars, stars aligning is supposed to be good, this is more impending doom aligning), my deductible has been met, my dentists want the assist and the issues are compiling.
The neurologist wanted nothing to do with the dentists and sounded a bit irate at the suggestion of it. My family practitioner was willing to work with them, but the neurologist said it was "not her jurisdiction". Okay then.
Next we went over my history.
Some of the things that have been going on since I starting recording them in 2014 are:
-Crashed immune system, increased frequency & duration of illnesses, every 6 days I catch something all winter long
-appendages go numb/tingly, calves down, hands, arms at night
-lost sensation for how much pressure being applied to foot, misjudge stepping up on curbs, over items, lots of trips and stumbles
-lost sensation for how much pressure/weakness in grabbing and holding items, lots of dropping items
-some words don't come out how I think they are going to, like jumbled or sometimes like a stutter
-sciatica on right side
-odd allergic reactions to things
-constantly feel dehydrated
-right leg gets stiff, heavy and less flexible
-teeth deteriorate, clench & grind, crack & crumble, 3 crowns in 3 months in fall 2017, break and new deterioration in 2019 despite Rx grade toothpaste and vigilant care
-sensitive to heat and sun, sunburn easier than previous years, extreme fatigue
-sensitive to cold temps, increases numbness and stiffness, increased pain flare ups
-TN flare ups increase and last longer
-insomnia, cannot sleep, 2-3am, if I do fall asleep before that I do not stay asleep
-chest pain, leads around to back, girdle/vice/hug
-decreased strength of muscles in and around my mouth on the right side
All of this comes and goes, its not there all the time.
Some medications help some of it, some make some of it worse.
As you can see there's a laundry list that one or two or even a few of can be written off, ignored, explained, but all together some red flags go up. Years ago I made the decision that this stuff in combo with the TN and the PCOS made it pretty impossible to work outside my home any longer. I used my sick days up every single year....on myself, not to mention kids getting sick or having appointments or getting away to see anything they perform in. I continued to work and push through by opening a business out of my home. This year it's all catching up to me & I'm struggling to push through it all & am working hard to treat what can be treated without too many side effects. To find a quality of life balance.
The Neuro, back to that, brash. Brash. Brash.
Likely she is overall a nice person and a good doctor, however, we rubbed each other wrong. I'm sure she didn't like my hammering of questions and my 'if this then what, if that, what's the next step'. She was also likely put off by my resistance to her medications.
See, most of the medications used to treat TN are seizure medications. They can also be used to treat Bipolar. They are strong and their side effects are many. They make you foggy, nauseous, dizzy, dehydrated, sleepy, in a state of surrealness, those are just baseline side effects. Weight gain is a huge issue as well. I am 5 foot nothing & have already packed on pounds on other meds & had it amplified by the PCOS. I can not afford any more weight gain. Why don't we just add diabetes and heart disease to the list now? Grrrr. This is simply not okay with me. On one I tried first, one that's most commonly used, I would nod off mid sentence. I am afraid to drive, afraid to carry the baby down the stairs, I am afraid to be the sole adult with other people's children when I have been on some of these meds. That is NOT the quality of life I want to live. Bring on the pain. I need to be present for my kids, for myself, I want to experience my life not surreally watch it from the couch.
But in order to move on with looking into the laundry list above, this neuro person was adamant we pick a new med to try. I felt bullied. I did end up saying I would try one of her meds. It is supposed to be similar to one I took back in 2017 but with an agent removed that many people are sensitive to & have side affects to. Thing is, it takes 2 weeks for it to level out in your system and up to a month to be stable on it.....there goes another month of life adjusting to a new med with more side effects, more weight gain. I just can't get myself to do it again, to take another med right now. I've 'gone rogue'.
"Going Rogue" is a term used when those with chronic pain, life long diseases, many conditions out there, decide that they are okay. That they don't need their daily meds, that they can handle it without it. Diabetics sometimes go off insulin under this illusion, epileptics off their seizure meds, mental illness patients off their anxiety or depression meds, their mood stabilizers, their anti psychotics. Eventually there is almost always a vengeance of a comeback of symptoms and we crash hard and crawl back to the meds and then have to build them up in our systems and stabilize again. Short term memory we have though, because this usually won't happen only once. Why then?
Back to Neuro (again- squirrel)
Finally after going through my history, my journaling of issues and surrendering to fill a med prescription, she said that the laundry list did suggest demyelination. She did a quick physical exam of reflexes. It was interesting to me how the 2 sides of my body felt differently in reaction to the poke tests and the reaction speed of a couple of the tests were different between the left and right sides. She said it went well and did not indicate the need for a Lumbar Puncture at this time, but she was ordering imaging of 3 areas to include c-spine, t-spine & my brain. 
She asked of I was claustrophobic...I said that I had survived the CT okay. She very brashly snapped that those are 5 minutes tops and that this would be over an hour and many thousands of dollars more expensive and she didn't want them to be a waste.....see what I was dealing with in an already high stress appointment. Zero bedside manner. I will not share her name, so don't ask.
I replied with "If sedation is an option, it would probably not be a bad idea, I'll take it".
She wrote up a summary of our visit, including, "we discussed the TGN first and how we have many medications used to treat TGN, but you have to be willing to tolerate some of the side effects" (before referral to a surgery).
Really?
Many people with this condition in larger cities never even go to a neurologist, they go straight to a neurosurgeon for MVD or some other surgeries out there (Gamma Knife, Glycerol rhizotomy,
Sphenopalatine Ganglion Block). Your TN needs to qualify for surgery in order to get some of these. It needs to be caused by compression by another body part or tumor usually in order to qualify. Not all TN is caused by compression issues. It could be demyelination or virus caused. I do not know currently what causes mine. Some people never find out. An MRI can sometimes show. Even if mine is caused by compression, I am in no hurry to get another surgery and the thought of face, brain or near brain surgery scares the poop out of me. It would be a definite last resort, which I told her....but whatever, that was her take away.
I have also been back to the dentist this week with a 14 page facial pain assessment packet I filled out and had a consult over. They are doing a great job of trying to find the best course of action to take, despite the lack of input from the neurologist. They did their own measurements and exam to see how and where my jaw was presenting things that may contribute to TN or if TNJ was a contributor. The plan is to do scans that convert to 3D images to get a better picture of the areas they will work with. They were pretty neat when I was shown an example. The things they could view and assess were amazing. In their exam, once again, the right side of my face presented weaker than my left, even my tongue. It always both impresses and condemns me when all the pieces of the puzzle coincide and reiterate each other.
My MRI is scheduled for TOMORROW (Thursday April 25th) in Rapid at the Neuro building. Since I opted for the sedation we will be there a while and I will need a babysitter for the 24 hours following it. The sedation takes an hour and a half to be complete then the MRIs will take another 90 minutes or thereabout to complete.
Why so many different scans?
They are all different and can show different things, different anatomy at different levels.
Both MRIs and CT scans can view internal body structures. However, a CT scan is faster and can provide pictures of tissues, organs, and skeletal structure.
An MRI is highly adept at capturing images that help doctors determine if there are abnormal tissues within the body. MRIs are more detailed in their images.
A CT (computed tomography) or Bone scan takes very little time and the results are instantanious, they are used in emergent situations. It is a form of X-raying that involves a large X-ray machine. CT scans are sometimes called CAT scans. A CT scan is typically used for bone fractures, tumors, cancer monitoring, finding internal bleeding, and differentiaing between strokes.
MRIs take longer. Cost more.
An MRI (magnetic resonance imaging), uses radio waves and magnets, MRIs are used to view soft tissues and objects inside your body. They’re frequently used to diagnose issues with your joints, brain, wrists, ankles, breasts, heart and blood vessels. A constant magnetic field and radio frequencies bounce off of the fat and water molecules in your body. Radio waves are transmitted to a receiver in the machine which is translated into an image of the body that can be used to diagnose issues.
I'm incredibly nervous as to what they might show....or not show. While having a label for my condition, such as the MS they are looking into, would provide an answer. It would mean knowing what we are dealing with and having options for treating it, however then it's there. Forever. There's relief in knowing and there's also harsh reality in knowing. If there are no lesions or other evidence showing MS, then what else it might be or where to go can be so broad that it could take many more years and digression of my body to get it figured out.
What are other thoughts on what might cause these issues?
- a prior case of shingles (I had those in October of 2006 & spring of 2008 as well as chicken pox in 1987)
-Lyme disease (I've had my share of ticks over the years)
- any of the conditions in this link
or a world of other possibilities
Neurological conditions and diseases can take decades to decipher and pinpoint. In the mean time your body does what it does. Unfortunately.
An amazing lady from my hometown was the head of her department at a nursing home, she began showing signs of demyelination and by the time she got a diagnosis 5 years of appointments and tests later, her degeneration from the disease had her admitted as a resident of said nursing home.
Knowing these things, when presented with accumulating issues 5 years ago and beginning to work through what might come down the pike, I took a long hard look at life and thought about what I wanted to do with the next decade if it was my last 'good' decade with a decent quality of life.... I decided I wanted to give Wayne another mouth to feed. An understanding and agreement was made. We had Joe, and now I am going forward with the rest. Hysterectomy, check. Prolapse repair, check. Neurology, underway. Dental repairs, in the works. Figuring out life, continuously.
Until the next update..... I'm.... okay.
