Wednesday, March 28, 2012

Today is tomorrow's past

My what a shocking day it has been -truly!!!  Today, I went to the Chiropractor and had a wonderful adjustment after a rough 2 nights.  SO thankful she's understanding and caring.  

After that, we went to Dixon and had an appt. for PT to fit me with crutches for my knee scope on April 17th.  She trained me on the crutches and walker and then we went to Arthur's Deli to enjoy a salad and baked potato (for Kelsey and Shane) and to waste time since I had 1hour and a half till the appt with Neurologist.

Saw the Neurologist at 1:30.  He is a very nice doctor and it's looking like my nerve issues may be autonomical neuropathy.  He wanted some nerve testing done which would take about an hour.  Since we were already there and they were able to do the testing right then, we, or should I say I went to it.  Yikes and oww are two words for that kind of test.  Not positive but I think the test was an EMG study.  All she did was my right arm and right leg.  I just wasn't prepared to feel exactly what I felt.   I felt like a kid again sticking the Operation game tweezers into an electrical outlet. BUZZZZZZ!:)  Get the idea?  On the 16th of April, we go back for the results on it and discuss the next step. SO thankful tomorrow's a new day.
Shane preached tonight the and his title was "Getting Passed The Past And Pursuing The Promise'".  It was very good.  His text was Phillipians 3:13. I enjoyed it and want to get the CD of it.  Was a bit tired from today and didn't get to rest like I wanted to have, so I probably missed a few points.
Hard to believe our oldest is turning 11 on Friday.  Worked a full day with her in me till I went to the hospital that night having my water leaking.  We wouldn't be leaving till I had a baby in my arms.:)  The fun and anticipation of new parenthood.  Kelsey is growing into a beautiful young lady that loves God with all her heart and has always had a tender heart towards life.  So blessed and thankful God blessed us with her as our sweet miracle from Heaven above.  May God continue to guide her steps and may she always seek His face and His will.

Thursday, March 22, 2012

Appointment update

         I'm sure some have you are wondering if I'm ever gonna update this.  The answer~YES!:)    We have been busy and I've been waiting for some Doctor's to call back.

My appointment on Monday with the Rheumotologist was uneventful.  She felt a few spots and said that I had Fibromyalgia and osteoarthritis in both hips.  She offered me a cortisone shot in the hips, but I'm going to wait a month before doing that.  We are not treating the fibromyalgia at this time.  I did notice that a good night's rest made a difference in the pain of the muscles that she had pushed around on.  The bones still ache but praying with the supplement of the vitamin D that will help.  So I am to follow up with her in a month or so.

Had the appointment with the Ortho Dr for the knee.  No change there.  I did have a few good days with the cortisone shot but that was it.  He told me that gave him a lot of info right there.  He feels that the pain is caused by something structural in the knee and needs to be scoped.  He gave me the option of doing it now, or waiting a month or so.  It's a 50/50 chance either way.  He just said he hates to see me wait and endure the pain when he's hoping the scope will help eliminate the pain.  I am waiting to hear back from them fora date,  but I'd like to see if it could be done the second week of April or so.  We'll see.

We have had some wonderful services in church lately and the Lord has moved in a marvelous way.  I can't wait to see all that HE has in store for us! So thankful for the power of prayer.  I hunger for more of Him.  To know Him more and desire to read His Word more, seeking His will and not my own.  So glad that my life is in my Creator's hands.  The One who knows me, cares for me, and loves me just as I am.

Sorry it's a quick update, but it's getting late.

Wednesday, March 14, 2012


Just wanting to give an update on our latest events.  I went to Chicago Feb. 29th for a follow up from the G and J tube switches.   No good results from that switch, so now we are waiting on  a phone call from Chicago regarding a date for a nuclear scan of the intestines.  Dr. Semrad (GI) would also like to do a deeper tissue endoscopy biopsy the following day after the nuclear scan.  So we may be looking at a hotel stay when we come for the nuclear scan.  She also would like to do a full thickness biopsy sometime down the road.  She also mentioned that she would like me to see a Neurologist to see if there is any neurological disorder that she could be missing, along with a Rheumatologist for all the bone pain.  

On the 19th, I see the Rheumatologist in Rockford, and on the 20th I see Dr Gabriel for a follow up with my knee.  

I am so glad that my hope is in God.  God is so faithful and has never left me.  So glad I can place my cares at His feet.  I don't have to fear because He holds my tomorrow.  

We had a very exciting weekend .  For those of you who don't know, we added to our household 6 more feet.  We let the kids pick out a chicken each to care for.  They are only going to have them for a couple weeks.  My how they are getting bigger.  They each choose ones that were all unique in color to tell them apart from each other. Kailey has a yellow chick, Kelsey's is tan, brown, and black, and Matthew's is a grey and black.  They love to eat and make messes.  We take them out and hold them in our palms and they snuggle in and go to sleep within a few minutes.  It won't be too long before they have to go, with their chirps getting louder and them growing.  We've all been enjoying them.

I'll update again soon, but wanted to get a post on here to get it going.  

Saturday, March 3, 2012

In a nutshell....

In April of 2009, I developed an unexplainable gastrointestinal illness that took me from being a very active lover of food, participant in home, church, and community at 145 pounds down to a weakened 88 pounds.  After several visits to several doctors, it was determined that my case was an unusual and unexplainable case. 

Thankfully, in May of 2010, God opened a door for us and a new team of doctors came on board and introduced a new series of testing that discovered what exactly my illness was.  The revealed condition is called Gastroparesis, an incurable disease which causes the stomach to become paralyzed and unable to process food.  After failed trials with medications from around the world, a feeding tube was placed in my nose and went to my intestine to bypass the stomach.  After  about 2 months of tolerated feedings and some weight gain, they decided to place a jejunostomy feeding tube directly into my small intestine.

In September of 2010, I was seen by a surgeon specialist at University of Illinois at Chicago and I was able to receive a gastric pacemaker in order to electronically stimulate my stomach.  For the first month after surgery, things were really improved.  I was finally able to eat REAL food!  I even had a Blizzard on my home from the hospital!  Unfortunately, the honeymoon only lasted for about a month and the symptoms were coming back.

Months went by with just maintaining the feeding tube and trying my best to keep going.  In June of 2011, a gastrostomy tube was placed in my stomach which allows me to vent the gastric juices and whatever does make it to my stomach.  This was to placed to prevent me from feeling nauseated and having to vomit so often.

In the fall of 2011, the doctors placed a port into my chest wall that allows me to receive ‘TPN’ which is a bag of IV fluids made specifically for me to allow me to get the nutrients, fats and vitamins that my body needs.  We had also found out that the Gastroparesis had moved from my stomach and was now also in my small intestine. 

I am now at the point where I am unable to tolerate any ‘j-tube’ feeds and solid foods and have been totally dependent on the ‘TPN’.  Now even a glass of water makes me sick.

There have been several ER visits, tests, chest tubes, blood infections, severe allergic reactions, and even close calls where I wondered if I was going to live through the day.  But God has been faithful through every trial that I have been through and this trial is no different.  God has given me strength, determination, and a great support group of church, family, friends, and even people that I’ve never met.  I am a believer in miracles and I am trusting in God and his timing in my life.