Could This Be It? My Diagnosis?

For my long time readers, friends and family you all know about the unexpected turn my health took about 3 years ago.  Feel free to catch up here.  It’s been a journey I wouldn’t wish on my worst enemy.

Most know I have seen many many doctors.  One thing was common with them all, they had no idea what was causing such a life changing events.   Things were mentioned like tumors, Meniere’s Disease, strokes, cancers, Multiple Sclerosis; which it seemed was the big thing people wanted to label me with.  I was so tired of people telling me that is what I had because ‘your symptoms are just like my ____” or “you’re in the perfect age range.” I will never forget the big nurse that was wheeling me down to get my MRI when I was in the hospital.  She was in her late 20’s, big, blonde and hair in a messy bun.  She was chewing her gum in a loud and obnoxious way.  She was pushing the bed at the head while another nurse had the bottom.  These were her first words to me “Man, I bet you have MS.  You’re at the right age and it sounds just like it!” At this point I could barely open my eyes because they were so sensitive to light and movement.  However, I managed to open them, and give her the meanest look I could muster.  I told her that was the meanest thing anyone had ever said to me, and gave her a snotty ‘thanks’.  Then closed my eyes, and put a pillow over my head.  I was secretly praying for her to trip on my face.  Of course back then I think my thoughts were ‘fat face’.  I wasn’t a pleasant person back then, I was frustrated and sick.  I feel bad now for thinking that, but at least I didn’t say it to her face. That’s an accomplishment!!  But, really, who says that????

We later find out none of these were it, and it was a hemorrhage in the inner ear. What causes that?  No one knows.  My ENT in San Antonio told me they are super rare, and only happen in head trauma. I was asked repeatedly if I had been beaten.  I thought I was being funny when I would respond with “well, unless my husband beat me in the middle of the night and I not remember” Here’s a tip, don’t say that.  I only had one Dr that smiled at me when I said that.  The others, didn’t see my humor. I guess it was not appropriate.

I should play the lotto, because I ended up having another one in the other ear 2 years later.  We had just moved to Omaha, and Chris didn’t have insurance yet. Just perfect! So, I dealt the best I could till I got insurance. In the mean time, I wasn’t able to save my hearing in the left ear.  Which looking back, I wish I had tried to get a steroid shot in the ear drum, that ended up saving my right ear.  However, I doubt a ENT, that I never met, would do just that without all the other tests that came with it.

Once I did get insurance I went to Boystown National Research Hospital. I saw a Dr. Prinz.  She was absolutely the worst doctor I have ever seen.  She would hear nothing about my symptoms.  She couldn’t get over my hearing test results, and repeatedly lectured me on getting a hearing aid.  I explained the first time, that they aren’t cheap, and my deductible was so high I would have to pay out of pocket for one. She ignored that, and continued to get agitated at me for not having a hearing aid. Then she went ahead and just flat out told me my left ear was dead. Gone. Not coming back.  D.E.A.D!

I tried so hard to hold back my tears, but they started to flow. I realized I was not being heard.  I needed to know what was causing this, and what could be done.  I already knew my hearing was effected. I did manage to hold my tongue, because once I got control over my tears I got angry. It took everything I had to leave without getting nasty.  She never offered anything to help with the symptoms, not that I like drugs, but heck, you can only get pushed so far till you start wanting relief.

After that, I decided to go the more natural route.

Chris had mentioned getting Lymphatic Massages and did some research.  He found a girl that studied with a reputable school he knew of.  So, off I went to Skilled Touch Massage & Wellness in Gretna.  I have been going once a week for a few months now.  I love these massages because it’s an hour just for me.  They have these cool wands that the therapist will run over your body. They light up and sound like space ships.   If there is congestion, it will drag on the skin.  Like if you have sticky skin.  So, then they focus on that area and break up that congestion. They also have lasers that break up the nodules as well. Manual massage is also applied.

Lymphatic massage

At 100 bucks a pop, this has helped me a lot, but results would usually last only about 3-4 days.  Then my ears and head would be so full, that it throws off balance and hearing.

My last appointment, which was yesterday was, what possibly, could be my diagnosis. I had not had a massage in 2 weeks, and my body was screaming!  The first week, my therapist was out of town, and she was sick at my appointment yesterday.  So, I kept my appointment because my head felt like it was about to pop. I saw a different person, named Jean.

As I was giving her the run down on my symptoms, history, and my life for the past 3 years she asked some key questions. Asked about surgeries, my c-sections, infections while including time frames.  I had forgotten, and for good reason, I had a horrible Uterine Infection after Sophia was born. She explained that infection could have been the key point to my problem.  Even though the infection is gone, it could have left scar tissue,and blocked up my lymph system that was already compromised with poor eating and stress from the C-Section. Stress and poor eating also plays tribute.  A compromised lymph system also can affect allergies and food sensitives. The body can only handle so much before it breaks down.

However, after she had worked on me she told me my breast tissue was super lumpy.  Which, I already knew and had scheduled a Drs appt back in March to rule out cancer.  My Dr. told me that those lumps are ‘normal’ sometimes people are just lumpier than normal, but she felt nothing that would be cause of alarm. Ok, lumpy boobs are normal?  Don’t buy that BS, ladies!

lymphatic drainage

Jean, then told my head isn’t my problem, my boobs are backed up.  Which, makes sense as hormones are stored in your tatas.  Which could be the connection between that, and why I would get the hemorrhages on the first day of my cycle.  Your body can only fill with so much fluid.  Now, we will have a new battle plan with upcoming appointments.

So, what happens when your lymph system is backed up?  She explained on a diagram.  Similar to one below:

lymphatic massage

There is only one area that dumps all your toxins, and it is on your left side.  If your system gets back up then it has no where to go and keeps filling and filling. Putting pressure on certain areas, which in my case, is my ears and head.  Side note: I apologize for the crappy red circles.

For me, everything is being trapped in my breasts, and that is my problem area, but my head has paid the price. Which in turns has also caused the allergies and food sensitivities.  It is all connected.  She explained more and also better than I could.  I just found it interesting.

Now what do I do?

Exercise

Well, the biggest thing that would help me is exercise, but since my balance and head always feeling like it’s a balloon, that isn’t as easy.  I have started to walk the kids to school, but that isn’t a fun or easy experience anymore.   I feel like I’m being judged; a low life mom, drunk before 9am trying to walk her kids to school. Making sure I don’t fall in front of people, or fall and hit my head on the pavement.  However, I’m sure if I do it more often, it may be easier and get better.  At least that is what Chris tells me.  I dunno, do I believe him or not?

Eat big leafy greens

I’ve been doing more of my smoothies. I had cut them down because, let’s face it, I like to eat my food, not drink it.

Sauna

This is something that I will be starting. Humid heat affects dizziness, so it has to be dry heat. Since, paying for a gym membership for just to use a sauna is ridiculous, Chris will be building me one in the downstairs bathroom, right honey? In the mean time, anyone have a sauna they will let me use?!

Acupuncture 

I started this week.  I’ve only had 2 sessions, and not really feel any different, but it’s only been 2 sessions. One thing I have learned through au naturale is things take longer.  I was leary to go to a acupuncturist because I wanted to go to one close to my house. The Gretna trip can be hard on me. Sometimes I have to have someone take me.  My guy that is close to my house, happens to be very cute.  However, I decided to put my insecurities away and just go to him. He’s married after all, so he isn’t gonna care about a few flaws I have.  I’m 39, I wonder how long it will take me to get over my flaws. Aren’t flaws what makes you beautiful?  I was kinda hoping it was personality.  I usually win people over with my personality…I think.

Dry Brushing

This is something I have already been doing. Click here to read on some benefits to dry brushing.  Of course, they had me at cellulite!

Rebounding

This is another thing I didn’t think I could do. However, I went next door today, and did my first ever rebounder exercise. I did it with my eyes closed! As long as my eyes weren’t seeing the motion, I seemed fine. However, I will note, if you get one make sure you get one with a handle. Thank goodness my moms did.  Otherwise, this girl would have been on the floor cringing in pain.

If you saw my parents basement, it’s filled with many things to land on and hurt thy self.  I thought about making a video on it, just for giggles.  I still may do that.

Breast massage

Yep, go ahead, fill yourself up!  In this video I show what my therapist told me to do, multiple times a day. I still cannot believe I put this on YouTube, but if it helps just one person, then I am fine with it.  Of course, it helps with not wearing a shirt or bra when you do this. However, my girls aren’t for show so of course I have on a shirt. Ladies, I think this is something we should do, lumps or no lumps. It could prevent cancer.

In the end, just keep moving and sweating.  I thought running after a 3 year old was exercise, but I guess it isn’t enough for me to count.

Bummer.

I came home yesterday feeling happy and feeling like this made sense. It is the only thing that has connected the dots. Your lymph system is the only way you rid your body with toxins. It’s your sewer system.  If it doesn’t work right, it has access to all areas of your organs, and body in general. Scary thought.

I would love to hear what are ways that help your lymph system?

BLOGSIGNATURE

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My Update! The Post I Have Been Waiting to Write!

I’m just going to go ahead and make this day all about blogging, with a little laundry in between. Taking full advantage of nap time!

So, this is the post I have been waiting to write for months, and now I can finally do it!  As most of my readers know my journey started in the beginning of September.  I’m not going to go into details, but feel free to catch up here 

For 6 months it has been such a whirlwind of emotions, questions, bills piling up, chaos and frustration.  Needless to say, our household was falling apart.

Everyday Chris is not at work, he doesn’t get paid.  You can do the math on how fast money was going out and nothing was coming in.  Stressful doesn’t even describe the pressure we (mostly he as he tried to shield me from it all) were under.

Chris was taking off work to take care of me and the kids, because I could do nothing but lay on the couch or the bed for a good 4-5 weeks.  Then when I could get up and do things, I had to be holding onto anything and everything to make sure I didn’t fall.  Carrying a baby was dangerous, but I managed when I had to.  Then it was uncertain when the dizzy spells would occur, five mins after I stood up, 30 mins after I stood up or maybe not for an hour or so.

I was living in complete Hell.  Taking medications that only made me feel worse plus the weight gain on top of the post pregnancy plump aka PPP, and having to give up breastfeeding.   Having to be dependent on someone, when you are dependent on their income, is never a good situation.  Chris was growing frustrated.  Not just because he knew what would happen if he didn’t get back to work soon, but because his wife was suffering from something that we had no answers for.

We have some great friends who helped us with dinners, being caretakers, to drivers and some family who sent a little green paper to help.  We are eternally grateful for all you did!

Finally, by December I could go days without a dizzy spell.  My balance was coming back too! Praise God, it was coming back!!  Balance is a very important component to living.   I was paralyzed, just not in literal sense.  I couldn’t walk, carry my baby, cook dinner, drive and there were times, especially in the beginning I couldn’t lift my head.  It had to be propped up on a pillow.  Months of this was depressing, nonetheless.

From what my doctor told me, the inner ear hemorrhage I sustained is mainly seen in patients that had trauma to the head.  I was asked repeatedly, if I had been hit and not remember it.   I told the nurse that the only way was if Chris beat me that night, and I never remembered it.  That nurse did not laugh, but I did get a smile out of my ENT doc.  I thought it was funny.

My ENT told me that once someone sustains an injury like mine, you do not come back from it.  The damage is irreversible.  I opted for the $1500.00 steriod shot in my eardrum in hopes it would bring back some hearing and hopefully my balance would follow.  I have about a 90% loss of hearing in my right ear.

This is what I know to date.  Doctors still do not have answers for me.  I was seen by a number of doctors, to only tell me “I’m sorry I don’t have an answer for you.”  Do you know how frustrating that is?  Spending hundreds of dollars for initial first time visits to specialist after specialist, thousands on testing and to get a ‘we don’t know’.  Every doctor I saw was more than kind.  They worked with me, stumped and obviously wanting to help.  They just couldn’t understand why.  I saw an Oncologist that I spoke to for a total of 15 mins, and had to pay close to 800.00 for that visit.  Seriously?  I had hope though.  I thought if I had to pay that much, he would have some sort of news the next time I saw him with the results in my blood work.  I was thrilled the next time I saw him!  I was thrilled to find out I did not have cancer or some horrible blood disorder.  After he told me that, he showed me my blood work.  Most was normal, but I did have a few numbers that were borderlined.  I cannot remember what that was off hand, but I found out I wasn’t dying.  YAY!  “Now what?  What is your answer for me?”  I asked.  He said he had no clue.  I cannot remember how many other doctors I saw before him, but I remember I was crushed to not know why this is happening to me.  As the money quickly ran out, and the patience grew weary.  I wanted to see another doctor, like I wanted more dizziness.

I was finished.  Done.

I learned I couldn’t plan anything.  I had to do things as I felt that day, in that moment.  Because it would all change in an instant.  After not getting any direction from the doctors I saw, I started to pay attention to when my dizzy spells would hit me.  Not to go into too much detail, but I learned it was based on my cycles.  Then I looked back to the first awful day where my life changed.  It was on my first day, of my first cycle from having Sophia.  I was breastfeeding her, so hormones were all over the place as it was.  Every month, BAM I would be hit with debilitating vertigo.  So bad, I couldn’t move.  One moment I would be fine, the next I would be collapsed on the floor vomiting having my son go get daddy, or the neighbor or anyone.  I started to take notes, on every single day during a months time.  It would take me days to recover from the vertigo.  The dizzy spells would last anywhere from 5-10 days.  More days Chris had to take off of work, or arrange his schedule.  Then the overwhelming exhaustion, so bad it took everything I had to get out of bed.

I did not want to be left alone, ever.  I ran so many ‘what if’s’ in my head it was ridiculous.  I was scared.  There were many moments I would be in bed, and a pain would shoot through my head to my ear and I thought that was it.  Or, pains shooting through my neck to my brain, and thinking any second a vessel is going to burst and kill me instantly.   I was afraid I was having some sort of relapse that would kill me.  I began to think the doctors over looked something on my MRI scans and I was really dying.  I would tell Chris if he was up late working, to check on me throughout the night, and to ALWAYS make sure I was still alive before he left for work in the morning.  I did not want my children to find me in my bed, dead.  I went over emergency plans with the kids in case I collapsed when daddy was at work.  How to use a smartphone, and to run to the neighbors.  I prayed all the time.  Even when I was frustrated and angry, my mom would tell me, just pray.  So, I did.

Which leads me to what we did.

Chris is a certified FDN (Functional Diagnostic Nutrition) practitioner.  What is that?  As I am writing a book as it is, here is an explanation on that.  He put his certification into practice on me back in November.  We ran a hormone screen.  (His whole thing is body function, as a whole, and not to try to identify one thing.  Our bodies are a linking system.  Everything is linked.  Such an example is something as simple as tooth pain, it can be a result in an upcoming heart attack.) We found out my body had bottomed out, hormone wise.  Basically “presenting” as premenopausal, and at Stage 2, Adrenal Fatigue.  My body has never been regular.  I didn’t think much of it, that was ‘normal’ for me.  I have never been like clock work, so after the 3rd child I think my body just crashed.   The hormone balance was so out of whack that the other parts of my system then tried to compensate, or that’s the way I understand it.   I cannot say it is a direct link to my inner ear hemorrhage, but the fact that it happened when it did, it is the closest thing to an answer we have.  To follow the FDN model of D.R.E.S.S to restore function in my body I had to address those very things-Diet, Rest, Exercise, Stress Reduction and Supplementation.  In which case, I have only done a few of them.  For the stress reduction that is a work in progress….I cannot get rid of Chris,  ya know. 😉

My diet was horrible during and after my pregnancy with Sophia.  If it wasn’t caked with sugar I didn’t want to eat it.  As most of you know white sugar is poison in itself.  I’m not going to go into all the nutrition part of it, but realized my diet had to change.  I retain a lot of water during my cycles, so much so, it can look like I am 6 months pregnant.  Perfect!  After lots of note taking, I noticed on my ‘fat days’ my head feels so full, especially my ears.  The pressure is horrible, and that is when my hearing is the most sensitive.   So, going back to the inner ear hemorrhage being linked to my cycle, it’s not unlikely it burst because my body was too weak and too out of sorts, that the extra water weight could set something like that off.

What did I do?  After testing, first thing I did was I started on Bioidentical Hormones.  Why not just take synthetic hormones?

Bioidentical hormones are plant based and work with your body to fix itself for the long haul.   Sort of like a reset.  To reteach a path way and not necessarily replace it.  They are structurally identical to the hormones in your own body.  They match your own individual hormonal needs, as the synthetic uses a more “one size fits all’ approach.

Synthetic hormones are chemically based compounds that are not identical to what the human body produces. In which case can have some crazy side effects.  I always laugh when I hear of birth control ads on TV,  Heart attacks, strokes, blood clots, weight gain (which I DO NOT need more of) and other things are just some examples of things I would like to avoid. As in this 10 year NIH study that was shut down after 5.5 years because the benefits did not outweigh the risks.

Bioidenticals tend to take longer to notice a change, especially in this quick fix society.  In fact, I came very close to throwing in the towel.  I think people can only take so much of things.  However, I truly believe God’s hands were on me and keeping me patient.  If he wasn’t I would have gone mad long ago.  Chris and I would get into arguments because I would tell him, it wasn’t working and I needed a quick fix NOW!  Patience is a virtue I tend to not possess.  There is a prayer that I have heard, and said many a times.  God, please give me patience and give it to me NOW! He always showed me who was in control, and would show me small blessings every now and then, usually when I needed it the most.

Second was cleaning up my diet.  As part of Chris’ FDN certifcation he also runs tests on food sensitivities.  I haven’t had this done yet, but because I was so desperate to get off this vertigo whirlwind I would do anything.  That meant drastic changes.  I cut out sugar, wheat, dairy, eggs, alcohol and peanut butter.  Oh man!  Sugar and dairy were my 2 hardest things to get off of.  Every day I had 2 green smoothies which consisted of Kale, celery, carrots, apple, lemon, and parsley.  I thought I would spit it out once I drank it, but it actually was not bad.  It even got better as I went days without sugar.  I was retraining my taste buds.  That was another God thing.  I couldn’t have done it without Him.  I was actually doing better at surpassing the goodies than Chris was.

Lastly, exercise.  The very thought of showering put me into a lethargic spiral, so how in the world was I going to exercise?!  I didn’t until just recently, like a couple of weeks ago.  One thing I haven’t fully recovered from is the constant over stimulation I feel when I leave small spaces.  Things that I can just now do, 6 months after: Going for walks, going to stores (Walmart, Grocery stores, department stores, anything like that), being with big crowds.  The over stimulation I feel is something I cannot quite get the hang of explaining.  I guess the only way I can explain it is, this is how newborns must feel.  And, since we cannot remember what it feels like to be a newborn, you may not really get what I am saying.    I go grocery shopping when I know Chris is coming with me.  I have to push the cart or the feeling of falling over is too great.  Not that my body can’t stabilize, but the feeling is great.  Again, I don’t know how to explain it.  Chris still does the grocery shopping for me, in all reality I just don’t think I am there completely to do it by myself, yet.

March was an exhausting month.  Chris’ dad died of cancer March 16th.  We drove back to Omaha a few days before and was gone for over a week.  While all this happened, I got off my schedule.  The eating schedule, sporadic hormone taking, no exercise and back to sugar and all things bad.  Not only was it exhausting it was stressful.  Driving straight through to Omaha with 3 kids, 1 who hates to travel plus the death of my father-in-law, and then getting news my dog at home is dying and I had to put her down while I was away.  I figured I was up for some major sickness.

I was waiting for the massive hit of vertigo any day.  Any hint of a clue it was coming I popped a pill.  Charting my symptoms and all, I found out even the slightest temperature change can set me into a dizzy spell, if it was either during ovulation or the start of my cycle.  I waited and waited.  I would get bits of a possible feeling, and then it would go away.  I was armed and ready.

But…

It never came!  Now being in April, and just getting off of a messed up cycle, I did not have 1 dizzy spell!  NOT ONE!!!!  I felt what has become the normal changes in my hearing, my ear pressure, and my ear ringing was back, but the vertigo never followed!  I cannot tell you how huge this is, people.  HUGE!

Six months of this crap, and hopefully it is gone for good.  God is good.  I have prayed and prayed for this, as well as my mom and many other people prayed for me.  Prayer in numbers is amazing,  just amazing!

I’m just now getting back to my old routine, so kicking out sugar, dairy and wheat for good.  No doubt in my mind that had as much to do with it as the hormone therapy.

On my recent walks, the walks do not seem to be as bothersome as before.  I don’t feel as over stimulated as before.  I hope to one day start running again, but I cannot do anything that bounces my head.  It is very uncomfortable, and I haven’t tested if it will put me into a dizzy spell lately or not.  It’s not important enough for me to find out right now.

Finally, I am enjoying photography again, and well as being a mother.  I couldn’t tell you how many times I wanted to just go to bed and not deal with anyone or anything.  It’s finally coming around, and I cannot be any more grateful as I am.

I knew this would be long post, but in reality how could it not be?  This is a big thing for me.  Thanks for sticking around and reading it.