History

Before I ever entered into an affair, I was that mom that never did anything for herself.  That parenting style had massive consequences for me.  And in more ways than you could ever imagine.

When Zane was still an infant, I started to experience pins and needles in my feet and hands.  It drove me nuts and they were constantly buzzing.  The sensations moved around on my body and originally I suspected perhaps my back was out.  Maybe a major nerve was pinched and that’s why I was experiencing these symptoms.  So I saw my chiropractor several times, with no improvement.

I started experiencing intense heat along the right side of my face.  It felt as if the nerve there was going off and it felt literally as if my face was burning.  I would lay in bed, breastfeeding my son, with an ice pack over my face.  That’s how horrible it felt.  I created a post on Facebook, pretty much in a panic, asking friends if they knew what this could be.  Some thought it would be peripheral neuropathy.  Others thought it involved the trigeminal nerve that was exactly where my symptoms were.

My husband took me to the ER and that day, the attending physician suspected MS.  I fit the classic profile, age and my symptoms warranted further investigation.  So they performed a brain scan and I braced myself for bad news.  When the doctor arrived back, he said it was clear/inconclusive.  We breathed a sigh of relief.  They never scanned my spine or did a lumbar punch.

I was sent home with instructions to follow up with a neurologist.  But the office couldn’t get me in for another 3 days.  My symptoms were horrendous and I felt like I was on fire.  They prescribed gabapentin at the ER, but I refused to take them as it passes through into the breastmilk.  Which meant, I would have to stop feeding my child-who by the way, couldn’t feed from a bottle.  So I held on, as the pain became unbearable.  My husband just stood stoically by, unable and unsure of exactly what was happening to me.  A few hours later, in the middle of the night, I went into Zane’s room and breastfeed him for the last time, through a mountain of unrelenting tears.  I told him how sorry I was.  That I tried my best.  But mommie needed to take that medicine now.  I held on for as long as I could.  That’s how bad the pain was.

As the entire house slept, I finally took my first dose and waited.  The pain and fire on my face wouldn’t stop.  I thought I was literally going to die.  By 3 a.m., I finally woke my husband and told him he had to take me back to the hospital.  My mom came over to watch the kids and away we went.

My heart was racing, that much I know.  And the hospital was overfilled on what was a full moon night.  They ran more blood and thought maybe I had a tumor on my kidney, which caused the pins and needles to be constant due to some enzyme or something being excreted.  But when tests came back clear, they gave me a massive dose of something to calm me down.  I don’t know what it was.  But one second, I was in the worst pain of my life and the next?  I was hallucinating about a little boy wearing a graduation hat running around my hospital room.  And then, a green leprechaun came dancing through my hospital room next.  There use to be a time when we paid money to experience stuff like this….but those times were long over and the nurse likely gave me an overdose.  I was discharged immediately once I started talking about the leprechauns.  Pretty sure, they didn’t want a lawsuit for what they had just done to me.

I was foggy for the next day and I think within 48 hours, my symptoms were through the roof.  At that point, I didn’t trust our local hospital.  Neither did my family and we all agreed, we were heading up to Los Angeles to been seen at the best hospital.  I would not allow them to discharge me, until they figured this thing out.  They ran so much bloodwork looking for mineral deficiencies, Lyme disease, auto-immune diseases etc.  I saw a neurologist and all they could find was an unusually high heartbeat- tachycardia.  They pretty much came to the conclusion that all of my symptoms were caused from stress.   But they wanted to send me home with beta-blockers due to the heartbeat findings.

When I came home, being my usual stubborn self, I said, “Fuck that” and “If stress caused all these symptoms, then I need to remove the stress.  Not add a pill.”  So I started the process of transforming my life, one walk at a time.  One run at a time.

Now I still had all of the symptoms, and I wasn’t entirely convinced that stress caused this (because I am a stubborn super woman kind of wife/mother) so I turned to eastern medicine and found the best rated acupuncturist.  I explained everything and her first words were, “Don’t worry.  I can fix this.  I see plenty of patients in my office after having their second child.  Their bodies are maxed out.  Completely out of tune.  But this will get better.  I promise.”

Now I have no idea how it even works, but once those needles were put under my skin, I would start to feel an electrical current flowing from one to the next.  It kinda freaked me out at first.  But I would soon come to enjoy that sensation.  At first, I saw her twice a week.  Then we switched to one a week.  Then a few weeks lapse at the end.    It took 11 treatments but I finally got to the point where my symptoms were either gone 100% or they were so minor, it made no use to go back.  I had noticed sometimes that acupuncture increased my symptoms in certain areas after those spots weren’t buzzing anymore.  So it was a calculated decision on when to stop.  The total time frame lasted two months.

Why does all this history matter?  Well for one, I’ve never told you guys.  And two-I don’t even tell my friends all of this.  And three- I really need to write about what is going on in real time.  Because friends-I’m not good at all.

Before anyone suggests I am some type of hypochondriac, let me assure you-I’m not.  I’m probably the most even keeled person regarding medical stuff you will ever know. Fall down?  Oh you are fine, dust yourself off.  Feel tired?  Ah, let’s go to bed early tonight.  Other than seeing my OB yearly and doing a mammogram, I pretty much stay far away from doctors.

So with all that said, let me share that I have had many weird symptoms over the past month now.  First was the return of sporadic and very mild pins and needles in my foot.  Second, I felt a strange electric/heat sensation running up under my right eyelid, which was eerily all too familiar to what I had gone through three years ago.

I have had non-stop extreme vertigo and dizziness.  Spatially, my brain is sending me signals that surfaces have a higher pitch than I know they do.  These symptoms can be explained due to my inflamed Eustacian tube and subsequent retracted ear drum.  I get that and took a course of prednisone to reduce the inflammation.  According to my ENT, my inner ear looks great as of today-but my symptoms remain.

So I can honestly say, if those were my only symptoms- the pins/needles are caused from stress and the vertigo/dizziness was caused from the inner ear issue.

But I’m also experiencing epic migraines.  I’ve had four now since the optical one I had before our trip.  My vision has changed overnight.  I feel as if my brain isn’t getting the right signal to my eyes.  It feels as if my eyes aren’t working together.  And if anything moves past me quickly, my vision doesn’t react correctly.  When I talk to people, I struggle comprehending exactly what was said.  Cognitively, I feel fuzzy.  My head is buzzing and I have ringing in my ears.

Yesterday was the worst.  I felt as if my entire body was under intense inflammation.  Like every damn cell was inflamed.  I felt warm and yet, had no fever.  The only thing I could do was lay in a bathtub of ice cold water to relieve that symptom.  I had another heat wave/band and starburst visual disturbance coming from my right eye, when I awoke this morning.

I saw my ENT for a follow-up yesterday and went through every single symptom.  I finally said, “Look, I think I have MS and am experiencing a relapse.”  I told him all about three years ago and everything that happened then.  He really tried to impress upon me how important it was not to “go there”.  To stay positive.  He made it sound like just having migraines in of itself could cause all these neurological issues.  He said MS was so rare and the chances were so slim.  He did his best to convince me that it’s probably not that, just like all the doctors before him.  I nodded up and down, trying to soak in his positive outlook.  I am a big believer in mind over matter.  And I realize just how powerful the mind truly is.  Heck, you can convince people they committed crimes.  So logically, I know anyone can convince themselves of having any disease.

But I know my baseline.  I know just how strong I have been.  I’ve run 2,300 miles since radically transforming my life through fitness and I’m not a stressed out person.  I suspect my eye issue is optic neuritis which takes seeing an ophthalmologist to diagnose.  I have an appointment with one on Wednesday.  Thankfully, it’s my friend’s husband- so at least I should get a solid opinion on that part.

Today, I landed back at my ENT to perform a test called a VNG.  It’s a series of tests to see if a balance/vertigo issue is related to your vestibular system.  That can only get impacted two ways: disease or damage.  As in lesions from MS.

Well the results came back and my hearing is great.  But my eyes aren’t tracking objects correctly.  Which means…something in the brain.

I’m trying really hard not to “go there” so believe it or not, besides googling what VNG is for a friend, I’m staying away from the internet (except to post here).  I don’t want to go down that rabbit hole of what-ifs.  But I’m scared.  Really scared.

My ENT ordered a rush brain scan so I had that done this evening.  Results should be here tomorrow.

My inner gut says I am experiencing my first relapse of MS symptoms.  The ENT said it could also be some rare benign tumor on the auditory nerve (think that’s what she said).  Trying to stay positive but my head feels so off.  My vision is not right.  I walk holding onto walls or my children.  And anything with motion causes my brain to not process it.  I’m a fraction of myself and I just want answers.

And a good cry.

And a bottle of wine once this is all done (anyone care to share it with me?)

……

………

…and friends–this afternoon I got a call saying my father passed away last night.

I need prayers.  Lots.  In every language around the globe.  It’s been that hard of a day.

 

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24 thoughts on “History

    1. I tried to sleep…may have for an hour or so. Just logged in and saw this. Thanks LB. I know from last time, the attack eventually stopped. So I am holding onto that knowledge, that in time, this will lessen up and I will feel normal again.

      But I don’t even know if this is the same thing as before. It feels similar yet with new symptoms. The old symptoms seem minor while the new ones feel monumental.

      I keep tossing and turning trying to figure out, “Did I bring this upon myself? Did I trigger this somehow? Are part of my symptoms real, clinical ones? And the pins/needles just stress related?”

      I don’t know.

      I have moments of thinking I feel peace and for a second, I think I must have imagined them all up.

      And then the ringing in my ears kicks up again. Or the excruciating neck pain, as in tonight.

      I just want to run again. I want to feel free and vivacious and strong. But I feel none of those now.

      I haven’t had any appetite since this started, yet I know my body needs fuel. So I try to eat because I know that in itself can cause symptoms too. But it’s no where close to what I ate before. I’ve stopped all dairy and caffeine as I know it can feed inflammation in the body. I think full vegan is where I’m headed.

      Liked by 1 person

  1. I’m sorry for your loss…
    have they done any CT on your brain. Your symptoms are undoubtedly neurological. I hope they find out soon what is happening. Again I’m sorry for your loss and what you are going through.

    Liked by 1 person

    1. Thanks Marty.

      I woke up this morning very weak. Very, very weak. So my husband rushed me to the ER where I did a fantastic job of staying calm. They gave me tons of fluids and that seemed to help tremendously. The ER doc said whatever symptoms you are experiencing only get worse if you are dehydrated. So that explains this morning.

      Brain scan came back clear. Phew!!! That’s a huge sigh of relief. They did find some vessels branched around the auditory nerve which the report said would give me a swooshing like heartbeat noise. But that’s not my symptom and the doctor thinks this radiology finding means nothing.

      I’m home. I’m tired. Tomorrow more appointments-eye doctor and neuro hopefully.

      Liked by 1 person

    1. Thanks R3. I’m trying but today has been a difficult day. I just need a boost of energy-something to push me into the functioning realm. I am a fighter and if I have to crawl before I walk, then so be it. I’ve gone through this before and ended up with no answers. At least this time, clinically there were some issues the doctors could blatantly see with their own eyes (the retracted ear drum etc).

      There is nothing worse than hearing, “Well, all of the blood work looks normal. It’s probably just stress.”

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      1. I have been there, though your symptoms are significantly worse. I suffered from depression and vertigo. Both went away post divorce. Well, the depression is always at my heels. At this point is just something I accept as normal. I do agree that finding the root cause of the stress is key. What is happening in your life that your spirit is rejecting?

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      2. Also, how stupid of me to suggest you can just eliminate the root cause when the cause may be due to circumstances beyond your control. Grieving a parent must be so difficult. Good wishes to you.

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  2. Oh 2CH! I’m sending huge hugs your way. I’m pleased you don’t have MS, but I do hope they find the issue and can help solve it fast.
    So sorry to hear about your Dad. Those emotions are a see-saw of pain and tears, of remembering the good times, and mourning the loss of what will never be. Be extra kind to yourself at this time. Take deep breaths, and take time for you. Be gentle on yourself as you walk through the inevitable emotions. Praying for you. Email me if you want to chat. xx

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    1. I think I figured out what I have. It’s all starting to make sense now. Times I went to urgent care for things like pneumonia–well that was an early symptom of the disease. Another time I went in for swollen skin and they said a gland was just swollen, sending me on my Merry way with antibiotics. These incidents happened back in 2009. Which means, I have had symptoms of this disease since then.

      It’s a rare auto-immune disease. My grandmother died from it. But she didn’t get it till much later in her life. I have spent countless hours chronically my medical history, contacting doctors explaining my theory and symptoms and how they match. I wrote an extensive letter and sent it to the #1 doctor in Los Angeles. He wrote a book about it. If anyone can diagnose it, it will be him. Most doctors haven’t heard of it before. So I am having to educate them and push back when they say, “oh you can do a blood test and find out if you have it.” Problem is, the test only captures 70% of patients who have it.

      Neurologically, it’s affecting me. I can feel it. I have rapidly declined since putting up this post. I feel like someone has drugged me when the attack comes on. It’s just awful. I have lost 6 lbs this week and my size 4 shorts have a few inches in the waist now. I need to get my nutrition up. I’m not eating enough. I don’t want to eat, but rather have to force myself. The disease affects your moisture producing glands and it’s horrible. That explains why my ear is still burning.

      The good news is, I saw an amazing optometrist and he spent 2.5 trying to fix my vision issues. The disease has attacked that too. I sent him a copy of the letter that I wrote to the disease expert, just so he could get up to speed. He was incredible and thorough. He fixed everything with these contacts. They are weighted and have to fit precisely on my eyeball. The interesting thing is he actually had heard of the disease. He treated one other patient. So when I brought it up and said, “you know there is a new test out” and I said, “the one by X laboratories? Yeah I read about it. The hardest part of this journey is getting a diagnosis.” He said he could order the test for me and we could do it through his office.

      Might get a head start….before I can see the disease expert.

      I do have an appointment on Monday with a neurologist. So hopefully that will bring us one step closer to ending this nightmare. I’m exhausted. Please pray for me guys.

      Like

    1. Thank you M. I need them. Lots!!

      The last 2 days I was feeling more like myself but today I feel massive fatigue as if I am pulling myself through quicksand.

      The neurologist appt came back clear- no signs of any neurological disease. He said the key to figuring this all out lies with the rheumatologist expert. So we wait…

      Liked by 1 person

      1. One thing I can say, is that they once thought I had rheumatoid arthritis and fibromyalgia and it turned out just to be a vitamin D deficiency. Hope they check you for that…. Caused me severe muscle pain and lethargy. Vitamin D works like a hormone in your body, so just wanted to pass this along…. wish somebody would have tested me earlier, would have saved me years of pain and misery, all for something so simple. Anyway, still praying…. hope they get to the bottom of this… ❤️

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      2. I called my OB and asked if she could run some of the bloodwork now, specifically the tests that I keep hearing about online from sufferers of this auto-immune disease. Although she had heard of them, she wouldn’t have a clue how to actually order them. It outside of her speciality. But she did order what she could, ANA, arthritis panel and RH factor, CBC and a few other basic things. So I had that blood drawn yesterday. Not that I am expecting anything to show up in those. She ran those back in 2013 and everything looked normal.

        I have to say, I woke up this morning feeling way different than I have in the last month. I actually went for a walk. And then had my cryotherapy in the afternoon. I did stuff around the house which I haven’t done in weeks. So it’s a good day. I don’t want to jinx myself and think this episode is over. I still don’t feel comfortable driving and haven’t since all of this started. I just need a good chunk of time to pass before I will have faith that this flare up is over.

        I’ve had a LOT of people praying for me. And I even walked into a church in tears asking for prayer. That was Sunday. My pain was so great that day. I couldn’t take it. Since everyone prayed over me, I haven’t had another attack. I don’t know if it’s God, the diet changes, the cryotherapy, the supplements or the acupuncture–but whatever it is, I feel vastly different to how I felt during the height of all of this.

        I’ll take it. It’s been a helluva long month!!!

        Liked by 1 person

      3. I’m so glad to hear you’re having some improvement! That’s definitely an answer to prayer. I’ll keep praying…. xo ❤️

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      4. Btw–I have seen that mentioned in my research too- Vit D deficiency. That I think B6 deficiency too. I am taking a trace minerals supplement as well as a vegan multi-vitamin. And I am eating so well right now. I always ate pretty healthy but this diet is like, uber healthy.

        I’m hardly an expert at eating vegan, no wheat, no gluten etc. So meal time has been haphazard and kinda thrown together. I wouldn’t be shocked if they said something was low in me, especially now after dealing with so much stress, and this diet change.

        How did you become deficient in Vitamin D? Do you seek out foods high in that now, plus supplement for it too? I thought you got Vitamin D from the sun (I get plenty of that btw!).

        Liked by 1 person

      5. For some reason, everyone in my family is deficient, even my mom who lives in California and is in the sun all the time. For some reason, we just don’t absorb it through our skin as easily as most people and it doesn’t help that I live in Wisconsin where we don’t have as much sunny weather as California where I grew up. My doctor had me on 10,000 units of Vitamin D a day for 3 months and I finally came up to an acceptable level. Now I take 4,000 units a day to maintain. My daughters are doing better too. One was having severe muscle aches like me. With the Vitamin D she feels fine now.

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  3. Reading this broke my heart, I wish I had some medical or spiritual advice to give you. But from reading this post, I can tell you are a wise, strong and resilient woman with a big heart. Keep braving through and I’ll send positive thoughts your way – I hope you are able to find solace and peace eventually xx

    Like

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