Friday March Madness

Friday was pure madness as we rushed to get doctors' appointments completed so we could get out of Peoria, just as the Illinois High School Basketball Tournament was underway.

First things first was getting my labs drawn, which meant fasting blood work.  The blood work is no big deal when Jessica does it; it's the waiting for the labs to be drawn because I'm hungry that gets me all queasy.  Afterward, Jeff and I made a quick McDonald's order (sorry Abel girls...it wasn't at the Blue one) and hurried to my next appointment because all we knew was it was in Methodist Hospital.

We were very blessed as we strolled through the buildings with the old deer in the headlight look.  Various employees, hospital visitors and even a patient directed us and surprise, we made it to the reception desk early!  Yesterday was my initial appointment with Dr. Lancia (my new psychiatrist).  Jeff and I are both very impressed; especially that he not only is there for my psych medications, but he is also focused on my Lyme's symptoms.  He has started me on some totally different anti-anxiety medications to help me sleep, to wake up feeling rested, and to decrease nightmares.  Surprisingly I already feel a difference.  Woo!  I pray that the doctor/patient relationship will be successful on both sides and I will continue to stay on a positive road of mental healing.

After seeing Dr. Lancia for 2 hours, I was dead tired, but I had yet another appointment with my counselor.  It turns out that God gave us a miracle in that Pat, Jeff & my counselor, has been trying to see Jeff but scheduling was a mess, so I offered up my appointment so Jeff could see her instead.  So, before we hit Pat's office, Jeff went to Wendy's for a couple of cheeseburgers.  I was out cold, so I didn't care.  When we got to the Antioch Group Jeff went on in and I crashed out in the car.  For a nap in my little Chevy Alero, it was wonderful. :)       

Well, this crazy weekend of March Madness is complete, but next Friday the Madness begins again!

Love all of you ~ me

Feeling a Flaks

Have you ever just wished that the difficult moments in life could just disappear? I'm sure Job did.  Can you imagine being a true servant of God and then having God basically tell Satan that he can kill off, destroy, take away anything he wants of Job's, but he cannot take (a.k.a. kill) Job.  Job family was killed, his servants dead, thousands of animals gone, etc.

I'll be honest, I don't know if I could even have a flake of Job's Faith and Trust in God.

Jesus is my Savior and King, but if He left me and told Satan he could do whatever he wanted to do to me other than kill me; I fear my faith be shaken to the point that I would turn and follow Satan as my Savior.  What a NIGHTMARE!!!  Can you imagine the complete destruction that would take over your life...darkness & death?

Praise God I don't live in death and darkness, but I certainly can understand the fear some folks experience.  Each day is a mystery for me with the Lyme Disease; some days are fairly normal, some are filled with vomiting, and others are just filled with wonder.

God bless & love - Sydnu                                                                               8

Everything is really getting hard

Hello Friends & Family ~

Life has not been an easy one and it is only becoming more difficult moment and moment.  Vomiting has increase, my vision is so blurry, I have double vision, I itch all over, stay dizzy, confused and even lost

My depression and anxiety aren't horrible, but they do bug the snot out of me.

I am loosing weight like crazy (which isn't a bad thing, but something I need to carefully pay attention too) and I'm starting to experience what my doctor referred to as a cancer patient experiencing chemo related hair loss.  I wake up just fine some days, but other days I wake up with sections of hair on my pillow.  It is a weird feeling.  It keeps me wanting to refrain from brushing my hair. 

I know all of my reactions can be silly, but I don't know how to express myself in any other way.  I thank you supporting me.

Love ~ Sydni

The Night of Surprise

Boy did I ever get a surprise last night!  AND NOT A GOOD ONE!  I was just ready to go to bed, but I ended up running to the bathroom and started vomiting so hard that I seriously was sure I had broken every rib in my body.  Then the vomiting changed over to pure stomach acid then on to dry heaves.  I went from the beginning of vomiting to back to bed in about a 3 hour-period, but it was at least another hour before I fell asleep.

The last time I was on this antibiotic my dosage was 400mg, this time, however the dosage is 900mg. Add this to the research pain relief medication and it is mush more likely for me to become physically sick. 

I'm just so thankful that Jeff was home to help me to calm down, get me back to bed, and provide a cool, damp washrag. 

Educational Update on Lyme's Symptoms

Hi Everyone! 

     I thought I would provide an educational update on the stages of symptoms of Lyme Disease.  I am functioning in the third and fourth stages of symptoms.  Take note of the section highlighted yellow below.  I am also having additional symptoms including hair loss, which I have noticed through random pieces of hair on my pillow, a brush full of hair, and hair covering the shower drain, everyday.  One of the symptoms, I had read somewhere or heard from someone is that a Lyme's symptom is hair loss like an individual suffering from chemotherapy treatments.  I continue to thank you all for your love and support.  I can't imagine facing this time of my life without all of you.  

Love you all ~ Sydni

If you are bitten by a tick carrying Lyme disease bacteria, a circular skin rash often develops at the site of the tick bite within a month. The rash slowly expands and may become very large. Flu-like symptoms, such as fatigue, headache, sore muscles and joints, fever and chills, and swollen lymph nodes, also may occur. Lyme disease develops in three stages.

Early localized Lyme disease usually occurs 3 days to about a month after being bitten. If Lyme disease is not detected and treated properly during the early localized stage, the infection may progress to the second or third stages of Lyme disease and involve the skin, joints, nervous system, and heart.

Early disseminated Lyme disease is the second stage. It may develop several weeks or months after you become infected and can cause:

• Skin problems, such as an expanding, circular rash at the site of the bite. Additional rashes can then develop on other parts of your body as the infection spreads. More serious skin problems from Lyme disease are rare in the United States but can include swelling in the earlobes and near the nipples, and severe thinning of the skin on the hands and feet.
• Joint problems, which are common and include brief episodes of pain, redness, and swelling in one or more large joints—most often the knee. Joint symptoms usually improve with antibiotic treatment.
• Early nervous system problems, such as pain and weakness in the arms and legs caused by nerve inflammation.
• Heart problems, most commonly a slow or irregular heartbeat (arrhythmia). Heart problems caused by Lyme disease are rare and are even more rare if you did not already have a weakened heart before you got Lyme disease.

Late persistent Lyme disease is the last and often the most serious stage of the disease. It may develop weeks, months, or, in rare cases, years after the initial infection and can cause:

• Joint problems, such as early arthritis that most often affects the knee. A small number of people eventually develop chronic Lyme arthritis, which usually improves with antibiotic treatment. But joints that have been badly damaged may take a long time to heal or may not respond to antibiotic treatment. In some cases, surgery to remove the lining of the affected joint (synovectomy) may be necessary.
• Late nervous system problems, such as pain, weakness, or numbness in the arms or legs that can occur when the bacterial infection has spread to the nerves or spinal cord. Severe headaches, fatigue, or problems with vision, hearing, memory, concentration, and thinking can also develop. Serious nervous system problems can cause severe headache and stiff neck due to inflammation of the tissues surrounding the brain and spinal cord (meningitis); paralysis of the nerves that control the muscles in the face; and inflammation of the brain (encephalitis). These problems sometimes go away on their own, but if they do not, they usually improve after antibiotic treatment.
• Heart problems, which are rare, but can occur months to even years after being bitten by an infected tick. The most serious heart problems—such as inflammation of the structures surrounding the heart (pericarditis)—usually resolve without any permanent damage. Unfortunately, heart problems can be the first sign of Lyme disease in a small number of people who did not have early symptoms.

Later symptoms of untreated Lyme disease, such as joint problems, weakness or numbness in the arms or legs, severe fatigue, or difficulties with memory and thinking, may seem like other illnesses such as fibromyalgia or multiple sclerosis.

http://arthritis.webmd.com/tc/lyme-disease-what-happens

Yesterday

Yesterday my parents had to put Quasey to sleep.  She had numerous seizures and she had the four worst ones my mother had seen.  The doctor said there really wasn't anything else, so the best thing for her was to let her good.

On a much happier note we had the chance to meet Jen's (my sister) new boyfriend, Brian last night.  It's so surprising that we have so many similar interests.  Last night we figured out that we are on the Storm Spotter team in Washington.  Who knows what other interests we all share.  First above all, Brian is a Follower of Jesus...Jen's #1 priority.

syd

Jesus Please Help Me

Dear Jesus,

     Things are really becoming a struggle.  Physically moving around is frightening, especially the idea of falling down the stairs when no one is home.  No matter how much security I give myself by carrying my cell phone, if I fall it could get broken under me or slide out of my reaching distance; then I right back to were I began... home alone.
     I am having a terrible time keeping my feet under me.  I'm sure I look like a circus clown walking all goofy like with a cane wobbling and hospital gown wide open in the back mooning half the town.  My muscles just keep screaming regardless to things folks suggests I try, such as exercise, walking, or even bathing.  For example, Dr. Purtle, my chiropractor, and Callie, my massage therapist, have both suggested a warm relaxing bath.  Believe me, I am very fond of their 'bath' idea, except for one problem... how do I get out of the tub?  I need to get a forklift company on speed dial in my cell phone.  Ha ha!
     As for my actual chiropractic appointments and massage therapy appointments, they are wonderful.  I wish that they would just let me move in so whenever they had a free moment I could get spoiled with whatever treatment they deemed necessary.
     I have noticed problems with my speech and my hearing abilities.  I probably should get them both tested, but that would require some money to do so.
     Presently I am participating in a morphine related/opioid based research study.  This study is to access how well "Embeda" (the morphine based medication) controls my personal pain level.  I also have Morphine pills that serve as immediate release pain medication when the Embeda isn't working.
     I am also on to my third antibiotic and whew, it is really rough on my system.  I have aches and pains, I can't get comfortable, I'm having trouble breathing, I'm using the quad cane to walk, I can't drive, I am completely dependent on someone else; and that's just a portion of my Lyme's Disease.
     Well Lord, as you know we are looking at getting a referral to see Dr. Crist, a Lyme's Specialist, in Columbia, MO.  Lord, we have heard wonderful things about Dr. Crist, and we trust that if I am to have Dr. Crist as my doctor, then you will place me safely in the palms of his hands.


In Your Name We Pray ~
Sydni & Jeff
    

   
 

Hopes & Prayers

I've been doing a lot of thinking and it is time for me to share with you some of my deepest hopes & prayers.


My medications are changing like crazy.  I've changed antibiotics three times and narcotic pain medications twice.  The dosage of all my medication has changed at some point.  I am presently participating in a pain medication trial.  Some days it seems to make a huge difference, yet there are other days where I would easily beg someone to just run me over with their car.

I am continuing with chiropractic treatments and massage therapy.  I get adjusted at least once a week and massaged about once a month.  Let me tell you, I would LOVE to just live in their office and get adjusted and massaged.  Wouldn't that be a dream come true?!

Here is the Major Hopes & Prayers Part...
There is a Lyme's Disease Specialist in Columbia, Missouri by the name of Dr. Charles Crist.  He has a great rep in the Peoria, IL with other individuals that presently have Lyme's or have been through a variety of stages.  My personal physician is more than willing to give me a referral to see Dr. Crist, however, I need to check with my insurance to see it Dr. Crist is in our network.  If so, then I'm sure I will at least get the referral from my personal physician.  It is just a week and see operation.  I truly need as many prayers as humanly possible in this area.  My hope is to get healthy from this chronic disease so I can get back to serving Jesus Christ according to His Will.


Thank You & God Bless!


Love,
Sydni




    

My Blond Moment Corrected :)

Okay, let me clear this up for ALL of us...

When I first started taking antibiotics back in October my doctor ordered Doxycycline 400mg total a day.  Than when I started my second round on antibiotics in January my doctor ordered Ceftin 500mg in the morning and in the evening.  Unfortunately, the Ceftin did not work as well as we had hoped.  In the first 3 week period my Lyme's comp level dropped from 38 - 37; one whole point...yippy!  So, my doctor decided to end the 7 weeks time period of Ceftin.  She started me on a higher dosage of Doxycycline.  I will be now taking 900mg per day.

Hope this helps clear up some of the confusion associated with the antibiotic medication.

Feel free to ask any question you might have!

Love ~ Sydnu

Doctor Update from February 10, 2010

Hi Everyone!  I pray that your February is off to a great start!  May God's love surround you and remind you of the true meaning of "loving one another as we want to be loved ourselves."

Yesterday I went back to Dr. Knight's office to receive the comp levels from my Lyme's blood test the week prior.  Three weeks ago Dr. Knight started me on a new antibiotic (Ceftin), but unfortunately it didn't work.  Prior to starting the Ceftin my blood level was at 38.  Three weeks into taking the medication my level was only 37.


This is very frustrating because the goal is to get the comp level to stay under 20.  This can be a very long term process since my case is very chronic.  We just keep praying for God's healing hands over me.

Dr. Knight is starting me on a new antibiotic, but I apologize, I can't remember the name or dosage of it.  Jeff is (God willing) picking them up tonight.  We have had a very difficult time getting my Lyme's medications lately.  Drives us crazy!!! Once I have the info, I'll post it for you.


We are looking into possible other treatment.  There is a Lyme's Specialist in Missouri.  Our plan is to try one month of the new antibiotic and then look into a referral to this specialist.  We are just following God's plan.  We have been blessed to meet some folks recently that go to Missouri to see this doctor and they are all having significant improvement.  This gives me a sense of hope.

Well, at this point we are trusting in the Lord and asking that He truly opens His heart to any and all prayers.  Thanks to you all for serving as prayer warriors, supporters, and for loving Jeff and our family.


We love you all dearly,
Sydni

Multiple Updates from Lyme's Treatment this week

Well, the Embeda was increase on Wednesday.  I am still taking 100mg in the morning, but now I'm up to 120mg at bedtime.  It is oh so fun.

Today I saw my counselor Pat and I feel we had a good appointment.  We are cutting my schedule back to once every 4 weeks, to best assist my physical body.  Hopefully this will help me to rest more and give me a better chance to spend more time writing in my journal.

The best part of the day included my adjustment from my chiropractor and my one hour massage from my Massage Therapist.  

It has been brought to my attention recently of numerous child Sunday School classes praying for me.  This truly blesses my heart.  I remember as a child praying for a variety of people and wondering if anyone would hear my prayers, but now that I am 33 years old, I have no doubt that God hears every beat, every whisper, and every word that we cry out to Jesus for another person or for ourselves.

CHECK this out

Hey Girls of all ages....

My sister Jen has just started an amazing site here on blogspot.  Her blog is about supporting females from little bitty babes to fabulous grandmothers.  I think Jen's blog could be extremely helpful for you, a sister, a friend, a parent, a daughter, a grandma, and girls everywhere.  Take a chance and check out her site for yourself.  She already has me hooked as one of her Blog Followers.

Please join me and be a followers of...  Girlsforreal-jen.blogspot.com 

Thanks & love ~ Sydni

Participating in a Medical Experiment

You never know what will happen when you have a somewhat rare/understudied disease.  Earlier this week I received my participant medicine to help control my pain levels produced by the Lyme's Disease.  This medication is FDA approved, but is being tested to see how individuals do going from one opioid medication to this "morphine based" opioid.  So far, I am still struggling with pain, which is intense at times, but I also feel somewhat drunk from the morphine and am terribly sleepy.  This is an experiment and I will just go with the flow.  I see Angel, the research coordinator with Dr. Knight's office, tomorrow.  We'll go from there.

Well, I just wanted to give you this bit of an update.  Thanks for your prayers & support.  I'm so blessed to be loved by all of you.

Love,
Sydni

OUCH

Just an update...

Looks like I will be going back to the doctor on Monday.  My pain medicine has pooped out.  My body has just become so used to the Fentynal patch that it's not really working.  So, my doctor has decided to gradually take me off the Fentynal and gradually put me on a new morphine based medicine.  God willing this drug will reduce the pain if not take it away.  Please pray about this.

Also, this morning I had a crazy dream.  In this dream I kicked something, but in reality I actually kicked the wall in my sleep and I believe I have broken my big toe.  Yes, Dr. Purtle, I had iced it.  It isn't really bruised, it's more of a grey color.  Anyway, Dr. Jeff (my hubby) has taped up my toes and I hope it heals soon.  Worst case, I will see Dr. Knight on Monday, so she can look at my toe.

Thank you for your continued prayers.

Love you all,
Sydni

Medical Update from Today's Appointment

Just giving you a brief update. 

I saw my doctor today and my blood work was back.  When I had my first test to determine that I have Lyme's my number was 37.  Half way through my first round of antibiotics my number had dropped to 33.  Today we received the result of my blood draw post my first round of antibiotics.  Unfortunately it has gone back up and is now 38.  As a result, I started my second round of antibiotics this evening.  I will have another blood test in 3 weeks.  My doctor wants the number to stay below 20.

I would greatly appreciate your continued prayers.  In the past 24 hours I have had 5 seizures.  The fifth seizure took place today in my doctor's office.  Unfortunately, seizures are a side effect of Lyme's.  Hopefully with the new antibiotic the seizures will decrease, but in is uncertain.

Thanks for your love & support,
Sydni

Happy New Year 2011

Hello my dear family & friends!  

We made it through the ups and downs of 2010, and God has blessed us with a brand new year in 2011.  I pray you make this year a year in which you put GOD first in everything!

As for a Lyme's update... I completed my first round of antibiotics Friday morning (New Year's Eve).  I will have blood work drawn on Tuesday.  Then I will wait for two weeks and have a follow up with my doctor on  Monday, January 17th.  We will determine at that time where to go from there.


Remember to keep my family in your prayers & wear your lime green in support of Lyme's Research.


God bless & love ~ Sydni