Wishing for Spring

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I’m definitely starting to wish for Spring.  I am done with the cold and the snow and the mess that constantly gets tracked in on your shoes.  I still have a struggle with heat intolerance and when it’s below zero I notice that isn’t much of an issue even inside the house while I’m cleaning.  When the warmer weather comes I know that I’ll start with the annoying sweating.  It’s so embarrassing and frustrating.  My eye makeup runs even though I buy waterproof and even swimmable products.

It’s something that is brought on by my antidepressant and so there isn’t anything I can do about it because I need the antidepressant to survive.  I don’t take it for depression as one would assume.  I take it because it keeps me from being so nauseous that I’m unable to eat or drink.  It’s scary to think that without that little pill I’d die of dehydration and starvation.  I just hope one day they can figure out just what causes my body to react the way it does.  It’s been like this since 2009 when I first nearly died and was hospitalized.   I guess I should just be thankful I can take something that helps.  The two side effects, the sweating and extreme weight gain, are definitely frustrating to me though.

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Clean Eating for Life

I’m really hoping I can stick with eating mostly Paleo this year.  I know that my body would respond a lot better to everything if I ate clean.  I won’t lie, I despise eating healthy on a daily basis.  Once in a while I don’t mind, and there are a few things I definitely love that are healthy like berries and some vegetables, but Paleo’s eat a LOT of meat and I’m not big on meat.  I ate low carb Paleo almost all of 2014 and I felt much better.  I don’t know how I managed to slip away from it, but once I did it’s so hard to start again.  Summer is a little easier since fresh fruit and vegetables are more in season for my area.  Maybe I can put off starting until then? 🙂

It’s been a while

It’s been a while since I last posted.  I’m happy to say I had a fairly good summer.  Most days the pain was tolerable and I felt I had more energy than usual.  Once August hit I began having more endo issues, unfortunately.  So on December 6th, I had yet again another surgery.  This time to remove my right ovary that had latched itself tightly to a place it shouldn’t have been, and my appendix.  Thankfully recovery has been good like last year’s surgery.  This was definitely more painful the first week but it was manageable enough with just Advil.  I have an abnormally high pain tolerance I’m told so maybe it was a harsh surgery and I just didn’t realize it.  I despise narcotics and how they make me feel so I prefer to have a bit more pain and just take Advil and Tylenol.  Anyway, I’m praying this will be the answer to the severe pain I struggled with last winter and into spring.  I’ll know more once I’m completely healed from surgery.

Now the next thing that needs fixing is my back.  I’m just praying thats even a possibility.  I had an MRI and they found that I have 4 herniated discs in my mid back and in my lower back there are bone spurs and a tear somewhere.  When I stand or walk for long periods of time, my back feels like someone is stabbing me.  It literally brings tears to my eyes.  I have a tens unit I use at home which helps numb the pain while it’s in use but once it’s turned off, the pain is back again.  It’s always one thing or another with my dilapidated body.  I feel like it’s disintegrating to pieces.

 

 

Lyme Awareness Month

May is Lyme Disease Awareness month.  I wish there was more I could do to help spread awareness but I do as much as I can.  Mostly posting on Facebook, wearing my Lyme awareness necklace and bracelet, and answering any questions that I’m asked.  Dr. Horowitz says they’ve predicted that this year will be the worst yet for Lyme disease as there will be an overabundance of ticks.  They say it’s due partially to winter not having been cold enough to thoroughly kill them.  I thought winter was cold enough!  I remember it was -23 degrees at one point so how cold does it need to get?!  Geez!  Those stupid bloodsuckers are extremely hard to kill though.

So what do you do when you think someone isn’t taking the necessary precautions needed in tick prevention?  Or harder yet, what do you do when someone who should know better doesn’t take the precautions you think they should take?  Does that make them stupid just because you think they’re foolish?  These are questions I have to ask myself all the time with unfortunately all but ONE of my loved ones.  The only one who is as cautious as I am and maybe even more so is my daughter.  Otherwise, everyone else causes me great anxiety.  They walk and sit in the grass, they let their children play, sit,  and walk in the grass, they sit and lean up against trees, they go hunting in the woods, let their dogs in the grass, and I highly suspect there are no thorough tick checks afterward on themselves or the dogs.  I realize the only person who has felt the sting of Lyme disease, and I mean truly felt it, is me.  I know my family is affected by my sickness as far as worrying about me or feeling sorry for me, but they don’t know the sheer terror, heart-wrenching grief, and the 24/7 misery I live with.  If they did, I’d like to think they’d have more sense.  But I guess what they say in my Lyme community is true, “You don’t get it until you GET it.”  The ones with debilitating Lyme try to convey just how serious this disease is, but unless you live with it like we do, it’s easily forgotten.

A saying my mom used to tell me is, “A smart man learns from his mistakes, but a truly wise man learns from the mistakes of others.”  In other words, don’t do what I’ve done and end up like me.  Not that you can always control whether or not you get a tick bite because you can’t.  Even mosquitos, flies, and fleas carry Lyme and mosquitos especially are impossible to avoid.  But had I not walked in the taller grass and across the lawn where ticks love to hang out, I’d probably not be writing this right now.

I’ve never been much for being outdoors.  I hate the bugs that are always irritatingly around flying in your face, crawling on you, or biting you.  Mostly the gnats, ants, and mosquitos used to drive me crazy, or rather, STILL drive me crazy.  But I always have and still do enjoy taking walks on a beautiful day or sitting on the porch with a good book.  I love the fresh air and smell of being outdoors in the summer.  I enjoy a good cookout or picnic and going to the beach or pool.  I’m sad that I can no longer feel comfortable laying a blanket down in the grass on a beautiful day or allowing my daughter and dog to play out in the yard.  I mean I COULD still do it.  But then wouldn’t that make me the foolish one?  To take such a huge risk with my daughter’s life and my own?  To know what I know and to experience what I’ve lived through only to throw all that knowledge away by not using it?

I can’t live anyone’s life for them.  I can, however, be the annoying family member who to them is an overly cautious psychopath who they probably roll their eyes at and talk about once I’ve left, laughing about how ridiculous I am.  But who is actually the ridiculous one?  Me or them?  Maybe neither.  I’m very conflicted.  I know I’m not stupid, but I’m not sure that they are either just because they don’t live up to my standards of expertise in the Lyme disease avoidance department.  I do know one thing for certain.  If they ever end up getting infected with Lyme, they’ll look back and wish they’d been more cautious.  As good as “I-told-you-so’s” feel, in that circumstance, there would be no enjoyment.  I’m petrified of anyone, especially those closest to me, getting this evil disease.  It’s a thief that robs you of everything because when you don’t have your health, there isn’t much left.  You can have the most wonderful family, (and I’m beyond grateful that I do) or all the earthly riches you could ever want, but if you’re too sick to lift your head off your pillow, you’re not able to enjoy them.  I guess the earthly riches would still come in handy though since this disease will cost you everything you have in treatment costs and then some.  $1,000 monthly out of pocket for doctor, medications, and supplement fees may seem outrageous, but unfortunately, that is on the cheap end.  So I guess another advantage to Lyme prevention would be saving money.  No Lyme, no crazy treatment fees.

But if you’re not opposed to throwing your life and your money away, then by all means, sit in that grass, lay in it, roll in it, do whatever the heck you want in it and live on the wild side.  Chances are, you’ll be just fine.  But if that’s not the case and you find yourself sicker and in more pain than you ever imagined was possible, I may give you an “I-told-you-so” just to hold me off from punching you in the face, and then I’ll do everything in my power to help you get better.

 

 

A few better days

Thankfully I’ve had several days in a row with very little pain.  Oh, how I cherish these days!  There aren’t very many for me.  Now today I’m back to not feeling that well again.  I’m having some cramping and pain in my lower abdomen and my stomach feels like it keeps having little spasms.  It tightens up and feels like it’s squeezing as tight as it can.  It’s a very strange feeling to say the least!  Not comfortable at all.  There has been a little burning and heart burn as well.  My head feels motion sick and that doesn’t help.  I upped my antidepressant about a week ago and I think that is what’s causing my head issues at least.  I have no idea what is causing my stomach and abdomen pains.

I also didn’t get a good night’s sleep in the last 3 days because my daughter has been having some panic issues and has crawled in bed with me and I don’t sleep well with all her wiggling.  She just turned 12 and I know these are the very last of the times she’ll do that and want her mommy when she’s afraid.  So even though I don’t enjoy having to share a bed with her, I cherish these quickly fading times where she’s still my little baby.

 

A little relief

Today I was able to have some much-needed relief from the intense pain I’ve been experiencing the last few days.  I was still in pain today and am at this very moment, but it wasn’t as severe so I could tolerate it easier.  Why was the pain a bit less today?  I have no idea.  I wish I knew so I could keep doing it.  Unfortunately, my illness has a mind of its own and does what it wants, when it wants.  That is what terrifies me so much.  I never know when I’m going to be thrown into the grips of another torturous round of painful days and nights.

I finally slept last night after going without sleep for nearly 3 full days.  Maybe that helped the pain today?  If so, then why can the pain start on days that I’ve just had a good night’s sleep the night before?  UGH!!  So many questions and I’m just grasping at straws to try and make some sort of sense out of it all.  I’m just trying to be thankful and grateful for what little moments of relief I get.  They’ve become rare for me so far this year and that makes me very afraid.  I try to focus on anything but my illness whenever I can but constant pain makes that very challenging.  The fear is also crippling.  I’m so very afraid this will never end and I’ll be forced to live like this forever.  I just know I can’t.  I’m not strong enough to endure this much longer.  Physically I’m shocked I’m not dead yet.  Mentally I can’t believe I haven’t gone insane and lost my mind yet.  Emotionally I’m a wreck.  Yesterday my eyes were so swollen from crying.  I’m so exhausted from this neverending battle where the pain always wins.

There is never a light at the end of my tunnel.  How can I keep even a glimmer of hope alive when my life is so bleak?  I am in desperate need of some good news from my doctors.  I’ve yet to have that experience and actually have it come true.

Waiting for answers

I met with a new GI doctor this afternoon.  He wants to confirm that I have celiac by doing an endoscopy and taking biopsies of my stomach and intestines.  However, in order for the test to have an accurate result, I have to actively be eating gluten which I have not had for about a month now.  That delays getting my test done by 3 weeks because he wants me to eat a large amount of gluten each day before the test.  Not that I mind that.  I’ll GLADLY eat lots of bread and crackers and pasta.  I just am frustrated that I have to wait so long to have it done.

He also will do a colonoscopy at the same time.  I have a disgusting amount of bowel prep to do the day before and the day of the tests.  I’m not looking forward to that part at all.   I am looking forward to Lord willing, a conclusive celiac diagnosis.  I just think it’s odd that I never have noticed gluten bothering me.  Maybe it does in ways I just don’t realize.  I can survive without if that’s what I need to do.

I wish I had more answers instead of this agonizing waiting period.  I just want to go in and have every test they can think of done and get answers!  Oh how I hate, hate, HATE this process.  Trying to find the right doctor who will listen and really fight for you, trying to get appointments scheduled, then getting any tests scheduled, and so on and so forth.  I remember a time when I rarely went to the doctor.  And when I did, it was for things like a sinus infection, strep throat, or a yearly exam.  Things that they could tell you immediately what was wrong and fix you right away.  None of this chronic pain crap that is so hard to pinpoint the source that it takes a multitude of specialists and tests and even then you may not have an answer.  This is no way to live.  My emotional and mental health is deteriorating from the constant stress and trauma of being unwell.  I found the name of a therapist here in my town that I’m going to call tomorrow and see if I can get in to see her.  My LLMD says you can’t fully heal your body if you haven’t addressed stress and trauma.  When I have these episodes where I go months being debilitatingly ill, my OCD and anxiety hit the roof.  I just want someone to put me out of my misery.  I’m praying for some restful sleep tonight.  It’s been nearly 4 days without it and I’m a wreck.  The pain just won’t let up and nothing takes it away.

 

Another sleepless night

The pain has been so bad over the last few weeks.  It kept me from sleeping last night.  Every time I’d drift off I’d wake up because of the aching and throbbing in my abdomen.  I, of course, have no idea what is the cause.  Do I ever know?  No, of course not.  That would be far too easy on me apparently.  It could be so many things.  My fear is that when I do finally get to see the doctor, they won’t find anything wrong.  I’ve had that happen more times than I can count and it’s one of the worst feelings in the world.  Knowing there is something desperately wrong but no amount of tests can detect the issue.  It’s discouraging to say the least.

I want more than anything to have a life.  To be the wife and mother I wish I could be.  I’d love to be able to make plans and actually keep them.  I don’t want to be in pain every day that severely limits what I’m able to do.  I want answers!  I just want someone to know for CERTAIN what is wrong with me and then tell me how to fix it.  I will do anything!  Diets, exercises, tests, surgeries, medications, supplements, ANYTHING!!  I just need to know what I need to do.

Guessing on my own what’s wrong isn’t working for me so far.  I have symptoms that unfortunately are symptoms of so many things!  I’ve been researching and reading about Candida overgrowth and what it can cause.  Of course, I have every symptom just about.  I ordered books and cookbooks and have been following the Candida diet for the last week.  It’s hard when my gut hurts too much to want to eat most of the time.  But when I do I make sure it’s no sugar, dairy, gluten, soy, or processed.  I hate it.  If it would actually help I know I’d learn to love it, but when you limit all the foods you love (bread, pasta, cheese, ice cream for me) and you notice no improvement, it’s frustrating.  It’s basically what I’m supposed to be doing anyway for my Lyme and Endometriosis.  I’m finding that cutting all sugar, dairy, gluten, and processed foods out of your diet is what every disease tells you to do.

So possibly I have Candida overgrowth or it’s something entirely different.  I still wonder about C diff since my husband is struggling with that right now.  It makes sense that I’d probably have given it to him rather than he got it from another source.  I’m the one that has had the situations that cause it…long term antibiotics, surgeries, stays in hospitals, etc.  He really hasn’t other than one of his medications for his acid reflux.  Ugh!!!  Why is it so hard to get answers??  Why do tests give negative results when you actually, in fact, should be testing positive?  Why do test results say you have one thing when it’s actually another totally different thing causing the test’s result?  I want things to be conclusive!  Reliable!  Is that so much to ask?  Just someone tell me what the heck I need to do so I can do it!  Yes, I’m frustrated.  Beyond frustrated.  I’m angry.  I’m exhausted.  I’m in pain.  I’m terrified.  I’m so many emotions all at once.

I know that reading my journal is dismal and depressing.  But that is my life right now.  Living with Chronic illness isn’t sunshine and roses.  There is no way to sugar coat it.  It’s even more horrific when there is more than one chronic illness.  So far to date, I have 5.  Lyme, Babesia, Ehrlichia, Celiac, and Endometriosis.  If ovarian cysts are considered a chronic illness you can add that too.  Oh, and anxiety attacks that are crippling.  Those have been creeping up again every day.  I’m guessing because my body is in so much pain it throws my neuro system out of whack which doesn’t take much because it’s already so messed up it’s ridiculous.  I have to take an antidepressant NOT for depression, but because my brain chemistry is so imbalanced that for some reason it tells my stomach to throb, ache, and be nauseous to the point that I can’t eat or drink a thing.  I seriously could have died twice because of it.  In 2009 I was hospitalized because I hadn’t been able to eat or drink anything for a month.  Yes, a month.  The only way I got fluid was to go to the ER every other day for IV’s.  Again, a situation where every test they ran came back saying everything was FINE.  But it was FAR from fine.

The last 11 years have been nothing short of traumatizing for me.  All because of one little tick bite on my left side abdomen and a whole slew of idiot doctors that didn’t know a thing about Lyme even when it was staring them in the face in the form of a huge bull’s eye rash around the bite.  You’d think at least seeing the classic rash they’d be smart enough to treat with antibiotics just in case.  I wasn’t smart back then either, though.  I knew nothing about Lyme.  I only knew what a lady at my workplace told me when she saw my rash and bite.  I tried to tell that to the doctors I saw over the following few months but not one would listen to me about it.  I was diagnosed with everything from depression to them saying it was all in my head and I was making it all up.  I was a new mother to a beautiful baby girl, happily married, ready to start college, and enjoyed my full-time job.  Oh yes, very logical that I’d want to totally disrupt my whole beautiful life by “pretending” to be sicker than a dog and spend thousands of dollars on doctor’s fees and missed work.  Yes, I’m bitter.  I try not to be but when there are actual people and not just a tick that has destroyed your life, it’s a little hard not to be angry.  The tick didn’t know any better.  The doctors SHOULD have.

 

Living hour to hour, minute to minute

Today started out to be a promising day.  I woke up feeling pretty decent.  I got myself and my daughter ready and out the door for her allergist appointment in the later morning.  It was there that I started getting those familiar twinges of pain every so often that alert me that this day could turn to crap pretty fast.  It did.  But I did manage to take my sweet girl to her favorite store and let her pick out a new shirt and take the cat to get groomed before I went home to change into my PJ’s, collect my medications, laptop, TV remotes, and a glass of water so I could settle myself in bed for the rest of the day.  That was at 3pm.  It’s now nearly 9pm and I’m feeling about the same.  Pain in my lower abdomen, almost like a period cramp, dull ache, stabbing pain and burning all at once.  Thankfully it hasn’t been constant so far, but often enough that I really can’t do anything but try to rest as comfortably as I can.  It makes me nauseous and I’ve had to keep using the bathroom.  I really don’t know what is causing this to happen all the time.  Lyme, Endo, Cysts, or something else?  So far no doctor has figured it out for me so I just keep suffering.  It’s such a miserable feeling and a bad episode can last for days.  I’ve been struggling with my sinuses again.  It feels like I keep getting a cold with watery eyes, sneezing, congestion.  Some days are worse than others.  It’s so strange.  I never had allergy issues until last April.  I don’t know if it has anything to do with our new town we moved to?  I don’t know what I’d be allergic to here that our old town didn’t have.

It’s such a frustrating thing to never know from one minute to the next how you’re going to be feeling.  On the drive to the doctor’s office this morning I was seriously thinking how nice it was to be feeling as well as I was at that moment.  2 short hours later and it was a whole different story.  I could only think how thankful I was that I didn’t have any plans or obligations for the rest of the day.

I did make it to my nephew’s wedding last weekend and I’m so thankful for that.  It was about a 4 1/2 hour drive and actually, the driving back and forth went well.  I was very nervous about that because I get such anxiety in the car when I’m not feeling well.  I also didn’t eat or drink anything a few hours before or during the drive and I think that helped a little.  I didn’t eat much that whole weekend because my stomach was acting up.  I wonder if there will ever be a time when I can say my stomach doesn’t bother me anymore?  I try to keep hoping there will.  It’s been almost 12 years of suffering now and when you struggle with so much pain for such a long time it’s really difficult to keep that hope alive.

I have to say though that there have been some really nice moments in the past week.  I took my daughter down to the theater a few days ago to watch the new Beauty and the Beast movie.  We went at their earliest showing and on a weekday to avoid germs and people.  We had the whole theater to ourselves almost.  It was a lot of fun and for a couple hours, I forgot about my pain, my fears about what my future holds, and how scary it is not to be healthy and know you may never be.

Another Night

Here I am again.  Middle of the night, can’t sleep, pain so bad that I’m in tears.  I drift off into a restless sleep but keep waking up because my stomach is burning, aching, and feels miserable.  It’s been like this all week.  I don’t know why.  I thought yesterday it was maybe getting better and I was hopefully attributing it to staying away from gluten.  But now it’s back again and I haven’t had any gluten that I know of.  The life of the chronically ill is not for the weak.  It’s like someone sucker punching you over and over and once your face starts gushing blood, they just keep punching and punching.  Like someone is looking at my life going, “Who said she could have any relief?!  Zap her again!”

It’s been one traumatic thing after the other since I turned 19 and found out my mom had cancer.  That was almost half my life ago.  As if taking away almost everyone I loved wasn’t bad enough, it’s like someone said, let’s see what she does when we take her health too!  I’ve had enough trauma in the last 18 years for 20 people.  How does someone come back from this without serious scars?

I’m listening to my playlist of songs that I find comfort in.  When the medication doesn’t work it’s all I have along with crying out to Jesus and begging for some relief.  The uncertainty and fear creep in and take hold of me and I’m terrified wondering just how much more of this I can take before I crack.  How much can one person handle mentally and emotionally before they just fall apart?  I’m clinging with all I have left to the lyrics of one of my new favorite songs and claiming it as my own, praying it’s truth for my life.

“Masterpiece” by Danny Gokey

Heartbreaks a bitter sound
Know it well
It’s ringing in my ears
And I can’t understand
Why I’m not fixed by now
Begged and I have pleaded
Take this pain but I’m still bleeding
Heart trusts you for certain
Head says it’s not working
I’m stuck here still hurting
But you tell meYou’re making a masterpiece
You’re shaping the soul in me
You’re moving where I can’t see
And all I am is in your hands
You’re taking me all apart
Like it was your plan from the start
To finish your work of art for all to see

You’re making a masterpiece

Guess I’m your canvas
Beautiful black and blue
Painted in mercy’s hue
I don’t see past this
But you see me now
Who I’ll be then
There at the end
Standing there as

Your Masterpiece
You’re shaping the soul in me
You’re moving where I can’t see
And all I am is in your hands
You’re taking me all apart
Like it was your plan from the start
To finish your work of art for all to see
You’re making a masterpiece
You’re making a masterpiece

Heart trust you for certain
Head says it’s not working

You’re making a masterpiece
You’re shaping the soul in me
You’re moving where I can’t see
And all I am is in your hands
You’re taking me all apart
Like it was your plan from the start
To finish your work of art for all to see

You’re making a masterpiece
I sure don’t feel like a masterpiece.  More like a train wreck or a car crash.  I can’t imagine what God can possibly have in store for me.  It haunts me knowing I may never know His reasons for allowing me to endure this.  I want so much to come to the end of this and see how it was important for me to go through the fire because I have important work to do in His name.  But the realization that in my lifetime I may never know scares me.  I don’t want to feel like this torment was all in vain.  I want it to mean something.  I want my suffering to be used in a bigger picture far greater than I could ever dream.