The past two hours, and it's only 8:30 am.

I HATE the days I wake up angry and lost!

Have you ever had  days where that one person can make you so angry that your insides are shaking and you cannot rationally think?  You see red.  You jump from on conclusion to the next.  You are not a violent person, yet the want to punch something is so strong you are literally shaking from it?

This is how I wake up sometimes.  No reason, just awake.  Every little thing pushes me close to the edge where I feel like I am going to fall, and if I do there is no return.  It makes me hysterically cry.  I cannot stop it or control it, so I crumble to the chair and wonder 'why?', yet don't have an answer, so I feel like I am going crazy.

Am I going crazy?

I feel like it.  No control of my feelings or how my body will feel or function that day.  Other people with Lyme explain some of the same experiences, and though I try to not have Lyme consume me, it really needs to, because even on my good days, I need to be learning more from Lyme, not just it's symptoms and how bad it makes me feel.  

I just really want my life back.  

Yes, my acceptance of this has been very hard for me, and in turn, I think, is helping me feel more crazy.  My mind battles the realization that everything I was taught or how I was raised is no longer.  

I need to learn how to meditate.  Maybe that will help. 

What is Chronic Lyme Disease

I will not give you the scientific version of what chronic Lyme disease is.  That is easily found. The scientific aspect is finally being stretched to new expanses to learn the who, what, where, when, and hows of Lyme, but what we Lymies go through is just becoming known to the public.   

Lyme disease for me means...

Lack of energy.  Always feeling exhausted, even when you do not do anything.  My body has a heavy, dragging feeling, almost like I can not get charged enough to make myself push forward. 

Joint pain.  There are times where EVERY joint in my body aches and feels like it needs to pop or feels so swollen and large.  To be able to feel every vertebrae in your spine is one the weirdest feeling I have ever had, not to mention the tiny joints in your hands and feet.  On a daily basis, though, I have sharp pains in my knees (primarily my left), hips, shoulders, and elbows.

Ligament pain.  The surrounding areas of my joints are almost always sore to the touch, and when they are inflamed, it feels like it stretches the muscle connected to it, and causes muscle pain. 

Skin rashes.  I get these weird sores on my skin whenever I have a flareup.  They leave scars, and take a long time to heal.

Cuticle fungus.  I have to treat my nails with hydrogen peroxide once a week to keep the fungus at bay.  Antibiotic did nothing to help it.  if I do not try to control it, I get sore fingers and toes, hang nails, and messed up nails.

Hair loss.  My hair has thinned out, though that can be caused from many different reason as well.  I do have three children and a husband,  I use coconut oil weekly on my hair, and after six months, I have noticed a difference in my hair.  I will definitely continue.

Eye sight.  When I am going through a flareup, there are times it seems like on of my eyes is really blurry, or can see through a small straw, will have bright flecks of something floating around.  This actually does scare me when it occurs.  

Then there is the fog.  Cognitively there are so many things that occur, it is hard to realize that you may be going crazy from this.  During really bad flareups I have had hallucinations.  I have trouble remembering simple things.  It sucks turning left immediately after you told yourself to turn right. My decision making skills are nonexistent at this time as well. What I mean by that is that I really cannot make a decision.  My response to most things is "I don't know" There are times time goes by, and I do not even realize it.  Almost as I am on auto pilot and I am watching as life is going by, and doing what I have to, but not quite amongst the aware.  I also get electrical shocks flow through my body, intense hip pain that shoots stabbing pains through my legs, stiff neck, which cause migraines that make me sick to my stomach. Burning pain in muscle....feels exactly like when you run long distances and have a burning muscle....just no movement. 

When I come out of the fog, I am playing make up for all I missed, didn't attend, or plain forgot, and hopefully get caught up before the next round attacks.

Lyme disease is also missed games, practices, concerts, play time, family time, personal and professional growth.  It has not raped me of all of everything, but what I miss because of Lyme is not acceptable....though to have any peace, It needs to be accepted.  The irony of life, i suppose.

Learning a new way of life, that you never once thought of, is a very challenging experience to say the least. 

Continuing the Story

So to not leave you hanging on what happened after my round of doxy.  I began Doxy Nov 1, 2012....the day after Halloween.  I became so horribly sick on the meds, like I was told I would be.

I expected to be sick off and on for the next year, since I was told it would take that long to fully filter out of my body.   So, being sick was not unexpected.  I was a college student with 3 children, and had to repeat 2 of my semesters, since my sickness was bad enough to cause absences, which caused me to fail.

2013 through 2015 I have fought the fact of me being sick, but there is nothing I can do to ignore it any longer.  It has attacked my nervous system so much that I am now diagnosed with fibromyalgia as well, which has brought on severe depression....you think???  Thirty six years old, and I am told life is now about being healthy and fighting myself each day instead of the hopes and dreams we all plan for in life.  Hard to swallow.

It is now the beginning of 2016, and I resigned my job at the bank on doctors orders, since I cannot function for months at a time. I am going through the toughest part of the disease, which is not the disease itself, but to realize that this disease has killed the life you had and the life you always thought you wanted for yourself and would have.  I have, not to only live differently, but to also parent differently and look at my blessings differently.

How the Lyme shined on me

I will share just a little about how I was diagnosed, and some the bologna that I have gone through to make it to the point of sharing publicly my struggle with Lyme, doctors, and other issues that appear with Lyme.

Let's begin with bite mark....
My first tick bite, i was 12 years old, living in NY state.  I was bit on my back and the tick was huge by the time I found it.  Though I had no idea what it was, i was scared to tell my parents, so I removed the tick and flushed it down the toilet.  2 weeks later, at school evaluations, the school nurse saw a rash on my back, but seeing as this was 1991, and Lyme was just discovered a few short years before, I was given the instructions to watch it and see if anything comes of it.

At 21 I had a bite on my wrist, and this time I was living in FL, so according to quacks (I mean doctors) I couldn't get Lyme because it has not been found as far south as FL....hm.  That rash lasted approx 2 weeks as well.

At 22 I was bit a third time, but this time there was no rash, yet I was 6 or 7 months pregnant with my first born.  Again the doctor said there is no issue with living in FL.

I had these "weird" sicknesses and pains since I was 14 years old, and I was always told it was in my head, so much so that even my family members treated me like I was a little "slow", which would aggravate me so much, because it always felt like no one cared or would even try to help me.  Nope, it is just the way you are. You are too young to have aches and pains, push through it, I was told. Everyone has pain.  I remember being in sports in high school, and thinking if everyone hurts this bad all the time, what is wrong with me for not being able to deal with it?  What is wrong with me for not being able to be a "normal" person?

Fast forward to 2010, I am now 31 years old with three children, a successful business, and a bright future.....until the pain became uncontrollable and random and so much more intense then anything I have been through before.

I started getting these horrible pains in my stomach, under my right breast, and vomiting all the time.  I could no longer eat beef, since every time I did I would vomit, so my then doc sent me for an endoscopy.  Thinking it was going to be an easy treatment, since I was diagnosed with H Pylori.  I went through that treatment thinking I am on my way back to normal....my normal.  Not so much1
I then had my gall bladder removed one month after treatment for H Pylori.  Evidently there were some minor stones with no blockage, but the doc said I was hyper sensitive, so she will remove it now, since it is bound to come out anyway.  I trusted my doc, so I went with what she said.  Full recovery from gall bladder can take months, so I had no idea what I could eat or could not eat without getting sick for quite some time, not realizing there was an underlying issue.

For the next year, I was breaking out in these skin rashes (which I was told, as I am aging, my skin is getting more sensitive), having muscle spasms in my legs and back (well, that happens with age as well, and our bodies change every 7-10 years....okay, sounds plausible), having night sweats and major migraines that would cause vomiting (which I was told it was side effects from depression meds I was put on in 2006), I would feel like I have the flu with no sneezing, runny nose, or other noticeable symptoms that point it out as the flu (it hides sometimes, was what I was told), I began thinking I might be bipolar, since I was having mood swings like crazy, so the doctor raised the meds limit to the highest approved....that should work right, because it is all in my head?!  Not so much!

Doctors have tried to give me Xanax for anxiety (I do not have), pain pills for the pain, and add extra mental meds without a formal eval. I deny, because I refuse to be given narcotics and then forgotten about to become an addict....no thank you. I want the problem fixed, not just the symptoms covered for a short time.

In 2011 I had a horrible bacterial infection in my hands, so much so that you could see my skin ripple without any movement on my end.  The doctor I saw, who was not my usual, didn't even look at my hands and made the rudest comment when she walked in "everyone has these in their hands, it's called veins."  I almost walked out right then and there......you didn't even look!!!!!  Take some ibuprofen and have  good day.  I will not lie, I mentioned seeking a lawyer for malpractice, so I angrily walked out of the office. Now, what is stated in my medical records is that I was using hallucinogens and other drugs for me to behave erratically and I stormed from the office and pealed out of the parking lot.  The funny thing with that is, I now currently live in Maine and when we have a snow storm, there is no pealing out or speeding anywhere, and it happened to be a snow storm the day I went to see her. Anyway, I ended up going to the ER the next day, since it hurt so bad that I couldn't even button my own jeans.  The gave me an antibiotic for a week.  A week later my fingers were going numb with no signs of getting better, and now it was spreading to my toes and they were feeling numb........must of been those heavy drugs I never took.  I went back to my doc's office, this time MY doc was there, not the other quack.  She had no idea what to say, and I know she will not kick her practice under the bus, yet from the look on her face you could see she was not impressed.  She put me on a 10 day antibiotic to treat MRSA.  Again, i am still trying to figure out how it is all in my head, but I guess I am not meant to know.

2012 is when all the real fun begins, since the pain is in my hips, shoulders, wrists, elbows, knees, ankles, spine, neck, fingers, and toes.  I became so lethargic I could not work or take care of my kids. I literally felt like I was dying.  After the ordeal of the BS from above, I changed doctor offices, so here maybe someone would listen to what I had to say.  I though so to begin with, but she always made me feel like I was a bit nuts, which by this time I expected, since there was nothing wrong with me.  She was about to diagnose me with fibromyalgia when I asked her to test for Lyme at the request of a friend of mine, and she did. Two weeks later I came back with a definitive positive.  And I thought YES, this is something I can work with. This is treatable.  This is not going to be the rest of my life from what I understand.  I went on 28 days of Docy.  I thought I was going to be alright!