End of 2014

I'm so glad to get this year over with!  I had hoped to be well in starting the new year but my Lyme seems to be relapsing already.  Since being in the hospital my health has crashed.  I constantly have headaches and borderline migraines every day.  I wake up with them and try to go to bed with them.  My bodies pain level has spiked and I am on edge dealing with the emotional response to it.  I hurt everywhere.  The cold weather does not help and thankfully it's cloudy outside or I would be in my dark room and not on the couch with the kids.  Today I lost my sense of taste.  I have no idea why.  Which stinks because I plan to feast tonight with friends.  

Last night I held a presidency meeting and I could not focus nor complete a thought to plan the next step of action.  I had horrible thought block.  I sat down afterward and tried to gather my self and could not.  I barely fed the kids and then put them to bed.  I decided it was time to take my pills that help me sleep and unfortunately it did not work.  I was up for maybe 3 more hours in a drugged up state.  I threw those pills away.  I live in this internal hell and at night all I want to do is sleep.  My body just spasms and twitches uncontrollably and I cannot relax.  My mind is clear but my body is wild.  

I have had a reoccurring dream where I am having a full blown seizure.  I always wake up completely exhausted from the dream and emotionally drained.  I think I am scared that my condition will come to this without treatment.  I am current working with my insurance company to cover my past procedure.  

I have to go to the store today.  I may send my husband.  It's Las Vegas and its 40 outside.  Plus when I venture out I must tough it out, put on my "stick it to Lyme" attitude and once I'm home I can crash for a few hours.  Sometimes it's just not worth it.  Preserving energy sounds better every second.

My blood sugar has been running low for 2 weeks now.  As low as 56.  I eat properly, having glucose when it drops and eating proper carbs and protein to carry it on.  Sometimes it will only raise it to 80.  I haven't been over 100 in a while.  Even on a big meal.  

None of it makes sense.  My hospital visit showed the same test results.  One of my heart valves is only operating at 50%.  Everything else looks great.  Perfect even.  I was once again told how strange it was for some one my size.  (Let's just say I'm under 130lbs.). 

I plan to declutter my home in January and February.  In case we have to move it will be easier to pack.  If we stay then I can plan to paint and maybe set the home up how I really want it.  There is stuff everywhere.  I see so much coming in and nothing leaving.  It's driving me mad!  My bedroom is packed in and I'm about ready to absolve my office.  I never use it.  I will be happier with less.  Much less.

It will have to wait until the end of January for me to recover from my surgery.  I was told 7-10 days to recover from sinus polyp surgery...  Thankfully my mom is taking it off.  My hubby is taking care of me the first day and my mom for the rest, while he is at work.  I'm not looking forward to it but will be glad when it's over.  Then I can start on my back.  I may or may not have surgery to help the scoliosis.  It has always caused pain but in the recent years, and 4 babies later, I have had increased pain in my hips, right shoulder blade and back in general.  I lose feeling in my right arm a lot and often have a hard time walking from the hip problems scoliosis has brought.  My discs are nearly squished in certain places and with age will only get worse.  I will see the doctor soon to discuss it.  In the mean time I will visit my Infectious Disease doctor again about my recent drop in quality of health.

I feel discouraged almost daily but don't give up.  I'm just always in pain so I have a constant reminder of my situation that I cannot escape from.  I have grown stronger and more tolerable to pain.  I breath steady and deeply on a regular basis as a form of pain control.  Resting more and asking kids to be quiet or play in their rooms.  Poor kids, they don't go places besides school and church.  They know I'm not well and they understand but it's still not fair to them.  I know they will be fine it's just hard for them to hear of how much their friends at school and church are seeing and adventuring so much.  We couldn't take them to our neighboring mountains for a quick hike since all 5 tires, (yes the spare, too) are past the worn tread mark.  They are all cracked and rotted.  We seriously live on tithing blessings and its a miracle we have lasted this long!

Moving, I shudder to think of it!  Not while I'm sick.  Not while I can barely keep up with laundry, dishes and regular household chores.  If so then I want a low maintenance home.  No big landscapes, mostly patio covered backyard and in a culdesac.  This place is good but not easy for me to upkeep.  We will know more in a couple of months...  I hope.

Until then, I think I will just nap.  It sounds perfect about now....

December 20th...

Yesterday was my husband Bryan's birthday.  I had so much planned for the day.  I had our sitter lined up and surprise's ready to go.  About 9:30 in the morning I was excitedly discussing plans for the day and as I was laying in bed with our waking 4 year old I began to have an intense stabbing pain in my chest.  It followed by intense pressure and I had to sit up and breathe through the pain.  It wouldn't go away.  It would wax and wean for almost an hour before I decided to give in and finally get checked into the hospital.

I spend the time waiting in the E.R. for tests and results while my hubby tried to enjoy the rest of his afternoon watching Walking Dead.  My nurse, Bryan, had brought my hubby two muffins and coffee to celebrate his special day.  It was very sweet of him.  Really great guy.

As we are sitting there, my husband gets a call from our landlord/ family wishing Bryan a happy birthday and questions if he had checked his email.  I am sent away for x-Rays and upon returning find my upset husband still there.  After we were alone again he explained to me about the email.  Our home that we are renting will be short sold in 6 to 8 weeks.  We will be moving...  AGAIN.

Then as soon as that discussion is over I find out good news that there are no blood clots causing the pain.  I was ordered a stress test and that required fasting and an over night stay.  Yea.

As I'm waiting for the next move, I see on Facebook that my Uncle Jim is going into emergency surgery.  So I call my mom immediately.  She is already on the phone so I talk to my dad.  He told me he is having heart issues and it may be in a bypass surgery.  I finally get to talk to mom a bit but then I'm taken for an angiogram via CT scan.  I was on the table in the radiology room and my heart monitor was dinging away.  Fortunately they were able to get good pics and the doctor said I may be out soon and follow ing up with my cardiologist for more tests if I "passed" this test.

I get back to the room and try to find out more about my uncle. My cousin said he had an aneurysm....  I talked to my nurse about his status and was told that if its behind his heart that it was basically a widow maker and anything lower would be fixable.    So I asked my cousin where and I understood that it was lower in his abdomen.

My doctor returns and explains my test results which were the same as last time and I am discharged. I encourage Bryan to enjoy the rest of his day and we drive around looking at shops.  We finally decide on Big 5 and instantly head to the guns.  After a few minutes I receive a text from my mom.

"Can you talk?  Call dad."  I immediately told Bryan that mom wanted me to call dad and I stepped aside.  That's when I got the news from my dad.  Uncle Jim died.  He never made it to surgery.  He woke up thinking he was having a kidney stone and the doctors sent him to the E.R.  They did a CT scan and took him back almost right away.  Hey tried to revive him and could not.  

36 years ago on the very same day my grandpa died.  Now his son joins him in heaven.  What a birthday my husband had...  Or should I say didn't have. 

It still doesn't feel real.  Such a crazy day.  I will post more later but I need to rest.  I need to check up on my mom and family in the morning.

Frustrated

I want to vent but have no where to begin.  I'm overwhelmed.  My body is physically taking on so much and I can barely keep up.  I'm still recovering from a sinus infection so I need to give myself a break.  I just cannot express how much pain I am in all the time.  It doesn't make sense.  It's an emotional roller coaster of being determined to overcome it, to being heavy hearted about my new reality, to asking myself every day why I am required by so many to live a normal life yet not being able to explain or express my situation so I can just say no.  I think I need to go back to 3 counsellors again.  I forced myself to go to all of church today.  I hurt so bad.  Today was difficult because everything is adding up. My memory is horrible.  I can't articulate words to communicate the simplest sentences.  It's embarrassing.  I'm getting the feeling that others are getting tired of it, too.  Having to pick up my slack and correct me all the time.  I am being reminded of what to do next and as soon as I'm told I cannot remember what to do.  I just stand there with this blank look on my face.  I'm constantly forgetting things and cannot seem to make decisions at all. I go into the kitchen to make dinner and I just stand there, not knowing what to do.  I'm not sure if my depression right now is making it worse, but the only reason I continue on is because I don't want to lose anymore friends.  I feel I have burned more bridges this last year than I have ever in my entire life. 

I meet tomorrow with my ENT to talk about my surgeries and then I can maybe know more about how soon I can get back to my Lyme doctors.  I'm trying so hard to fight these trials I am being faced with and I feel I have never been weaker before in my life.  Maybe it's because I have been fighting harder at them...  Opposition is fighting back with as much force as I am delivering...?

I have thought to get off Facebook for a while.  I subscribe to a lot of support groups and Lyme pages. Everyday I see posts about another person dying from Lyme or of another's horrible health from the years of Lyme even with treatments.  I just don't think I'm emotionally strong enough right now to stay connected.  

My oldest has a science project at school to do, on top of her science fair project mind you, and it's dealing with plagues and diseases.  (Something like that.)  My daughter told me she was assigned Lyme Disease.  She has already begun to research it.  Talk about a horrible assignment. Your teacher talking at school about all of these horrible diseases and illnesses in history and making the kids all come home washing their hands every 10 minutes from fear.  Then mentioning how deadly some of them are...  AIDS, Ebola, Scurvy, Lyme....  She came home and hugged me tight that day.  I told her we should research it together.  She said she already did a bunch at school.  My daughters stress level has been a little high this week.  I think I need to go in and talk to her science teacher.  My daughter already knows the fact that I don't know when I contracted Lyme and she knows it's possible all my children carry it, too.  

I've been overly busy with my church calling and know I will be blessed for doing it, but cannot help but think of how I'm having to give up so much of my family's needs right now because I cannot do it all.  This is why I believe I need to call another counselor.  I'm sure they won't release me...  No one else wants the job.  It's very involved...  And I'm hardly keeping up with it.  I haven't started visits to the children yet.  I haven't done my part enough for these kids.  My presidency seems to be planning events and discussing primary positions being in need of filling more than having time to discuss the individual needs of our kids.  I'm going to fix that. 

 I just wish I could get past the guilt I have right now...  From not being a president who's capable of fulfilling all that needs to be addressed.  I know I have Lyme, but right now I'm called to be the primary president and I need to be able to do the job I was called for.  I know I need to rely on the Savior right now.  He is the only way I will be able to accomplish this calling.  He is the only way I will be able to get through this until I am released....  From all my callings in life.

Voodoo doll

Signed, 

Me

Fibromyalgia and head colds

Fibromyalgia is a syndrome in which a person has long-term, body-wide pain and tenderness in the joints, muscles, tendons, and other soft tissues. Fibromyalgia has also been linked to fatigue, sleep problems, headaches, depression, and anxiety.

Otherwise known as hell.  Especially when you are sick with a head cold that is going into your lungs.  Since Saturday evening I have been getting sicker and sicker.  Makes sense since I am the mom of a boy who is a few days ahead of me with the same thing.  Poor kiddo.  It's tough seeing him sick.  He just turned 7 and is such a sweetie.  He wakes up every night with a night terror, nightmare or just from sleep walking...  In which he is not silent about at all.

Now that he is sick, and myself as well, there is just no sleep schedule right now.  It's pretty much he and I take naps all the time!  

Tonight as I lay here trying what my hubby suggested, NyQuil for colds & Flu, I got excited thinking I may get some relief or sleep at least.  Nope.  Ok, well...  My nose has stopped dripping.  That's awesome!  Nothing like being woken up to water trickling down your face only to find out it's from your nose.  Yuck!

The pain is my biggest problem.  It's a nightmare.  Detox bath, music, massage, oils, happy thoughts, prayers....  A blessing.  It's the only thing I haven't tried.  

It's so hard to explain.  My breathing even hurts my ribs.  I want to just sleep all the time because it's the only time I don't feel pain.  It hurts to move and the more excercise I get the more my bones hurt.

Over the last few months I have been given a few "Lymie's " phone numbers to call.  I think it's time I reach out.  I'm starting to feel too overwhelmed by the pain, depression and lack of clear thinking.  I need some answers.  I need to hear that I can find a way to stay on top of this.  

I have heard of so many different ways to treat Lyme it's starting to spin my head!  Too much to gather right now.  So much trial and error and researching.  I already have so much on my plate with my kids, hubby, household duties and most of all, my calling at church.  It gives me a great distraction but gives me little time to take care of myself the way I need to be right now.  I am relying on the Lord to bless me to endure until I am released so I may finally move forward and focus more on my health.  If I can just ge through until the end of January, I think I will be better?  The holidays are so busy and being unwell I have already missed 3 baby showers, two game nights with friends, many church events, date nights with the hubby and any socializing with friends.  

Biggest part is I am not awake for very long at a time and I miss out on so much time where I could be doing other things besides sleep.  It's taking me forever to type this because I have to give my body a break from the pain.  

I know this blog, for now, has been my way to vent.  I try so hard to not complain or even mention the pain.  I don't want to focus on it nor be the complaining friend or spouse.  It's tough...  Especially when it feels like someone is ripping you apart on the inside, or stabbing you with a knife or shocking you until you cave and drop down.  Seriously, it's a nightmare I live every day.  I have better times than others, sure...  But right now is not one of them.  So much to do and so little of me to do it.  

I did my CT scan of my sinuses today.  It was very quick and easy and no IV's were needed since we are not looking for a tumor.  My next appointment is Monday with my ENT to talk about the biopsy to check wether or not my polyps are malignant or benign.  That will be fun, I'm sure.

I feel content now with my venting, so I'm glad I got it out!  Haha!  I have to be up in 4 hours to get my daughter off to school for crazy hair day...  Yippee.  Until next time!!  Love all of you!

Thankful days

I have had a lot to be thankful for in my life.  Every single day I wake up thankful for another day.  Another day to be here on this earth, no matter what condition I am in.  

This last month flew by for me. I have been focusing on my strength...  Physical and mental.  I went through a bit of depression recently and have pushed to over come it.  On the days where my pain levels are not tolerable, when my mind is just not all there or when the fatigue is so intense all I can do is sleep...  It's hard to be hopeful and motivated.

I feel like I am floating along in life.  Having less purpose.  I know I have responsibilities but the personal, willingful contributions I make just seem bleak and nonexistent.  I see my home, my husband, my calling, my kids and their behavior, I look into the mirror...  It all seems neglected.  

I know I cannot help it anymore when my body is not able to do the tasks before me.  This is where I struggle to remember that I have to let go.  To put me first and relax.  Tomorrow is another day.  Once I am having a good moment then I try to work in overdrive to make good use of the energy.  That almost always backfires and I'm down again.  

It's hard to change your thinking of over 30 years of knowing what you are capable of.  Learning new tricks...  Diet, exercise, supplements, sleep, rest...  How much of each is needed and planing future events accordingly.  The spoon theory is no joke for me now!  It's my bible of living the Lyme life.  Borrowing and saving strength, energy and hoping your mind will be on task at the same time you physically have prepared for the moment.

The RA is not fun at all this winter.  Places I didn't know could hurt me so much are surfacing each day.  New combinations of pain.  Sharp and shocking to dull and endless.  It's more annoying than anything.  You build up a tolerance for it and keep pushing through no matter how much it hurts.  My jaw muscles hurt a lot from clenching at the pain.  It used to be from smiling.  I always had a smile on my face.  I try hard to keep that part of my personality going.  Smiling helps to bring a positive attitude and with Lyme I need it more than anything!

My kids have seen me up and around a lot more this last month.  You would think it would have been a happy note.  Ok, it has!  I just don't think they are happy about mommy trying to bring about order and structure in the home again.  They are fighting it with a vengeance.  I can understand from their perspective and I need to remember that I need to spend quality time with them....  After their rooms are cleaned!!  

I have set up a new system in our home for behavior and the old chore charts are starting again.  Work and responsibility are my goals right now, hopefully it brings about some respect, humility, and maybe even some free time for all of us to go play more often.  If I can just get my primary responsibilities in check I wouldn't feel so torn between them both!  I feel absolutely horrible about managing my time between family and church.  I am so bad at it.  That's my personal goal this month.  Working on time management, prioritizing and delegation in my new Lyme life.  

Speaking of goals...  I finally have my doctors appointment this Wednesday to discuss my polyp removal surgery on my sinuses.  I'm apprehensive about it all.  I know it needs to be done but I cannot even tell it's there.  Researching my phantom left ear pain, which I now have again thanks to the colder weather, is how we discovered the polyps in the first place.  I know the biopsy will show it's benign since its in my sinus, but I'm not looking forward to the pain from the surgery aftermath.  2 weeks.  It's not that bad.  I will only need to be on watch for 24 hours afterward and then I will just need assistance for the next few days.  If my first week goes well I should be able to go off pain meds to see how I am doing.

My biggest concern with surgery is that my immune system could get shocked.  I've researched a little about it and don't feel I know enough.  You see, Lyme can multiply much faster with a weakened immune system.  For now I am keeping the bacteria in check because I have attacked most of it and have helped to raise my immune system for better maintaining of my disease.  

I guess it will be another learning experience!  I hope to learn a lot more at Wednesday's appointment with my ENT.  Hopefully my hubby can come, too.  I would like that.  

Thanks for being patient for another post.  I don't know who all reads this.  I'm not very entertaining and not much of a writer either!  Just hoping to share my experiences for my own record and for the hope that someday it will help someone in their journey.  So to that I say hang in there!  No matter what you are going through it will pass.  The trial will change and life must go on.  I am not my disease and every day I am getting closer to finding me again.  I just need to keep going...  One moment at a time!  Love you all!!