Truly Thankful

Thanksgiving is next week and I guess you could say that I've been dreading it this year.  Most years I would have already gone through my old and new Southern Living magazines and cookbooks and fantasized about all the incredible desserts I would make.  I'd have gone to the grocery store already and bought far too many groceries for the feast that would surely come on Thanksgiving with my family.  But this year is different.  I can't eat turkey and dressing or yeast bread or delicious desserts.  I can have baked fish & steamed vegetables.  So Thanksgiving can't be about the great food this year for me.  It has to be about something different.  Honestly it has to be about what it should have been about all along....being thankful for all that I have been given. 

I'm ashamed to admit that there is not a single holiday where food was not my primary focus.  Thanksgiving was the turkey, the bread and the desserts.  Christmas was the delicious smoked ham with mashed potatoes, Italian Creme Cake, and fudge.  Easter was again the ham & another one of my favorite cakes....Coconut Creme Cake.  But now all of those foods are forbidden to me unless I want to be in excruciating pain.  Funny how much of a motivator pain is.  I've never been very good at staying on diets very long but add in some pain that brings you to your knees when you eat something on the "No No List" and I'm one committed dieter.

So here is what God has taught me about holidays in the last several months.  Holidays are a time to stop and thank GOD for all that HE has done for me...

• thanking HIM for sending his son, Jesus, to die in my place for my sins
• thanking HIM for my husband, Rick, who has supported me through a lot of illnesses and always says, "We will get through this."
• thanking HIM for all three of my kids, Luke, Sarah and Jonah, who have prayed over me at meals and many other times when they could tell I was hurting and who have made me laugh just by being the special gifts God made them.
• thanking HIM for my true friends who share not only their lives with me but pray for me and my family
• thanking HIM for my family who make me laugh the most and can drive me crazy just as much (I know I drive them crazy as well.  So we are even.)
• thanking HIM for sending my family to Geyer Springs First Baptist Church and for the many blessings that we have experienced there and for the many ways we have grown and healed since we joined.

I'm still working on this one but I'm learning to thank God for the trials HE sends my way.  I know that with every trial I learn more about HIM and grow closer to HIM.  This bladder disease is a trial that will mark my life because it has no cure but it also helps me DEPEND on HIM 100% every day.  May we all be truly thankful for all that God has given us this Thanksgiving and all the holidays that follow.

Strong Enough

The last 3 and a half months have caused me to admit to myself and to God that I'm not strong enough to handle what life throws at me.  I have spent the better part of my life believing I was strong but the truth is I'm not strong enough to handle life's trials.  But God is and I know that HE is carrying me and my family through this one.

Psalm 28:7 "The LORD is my strength and my shield; my heart trusts in him, and I am helped. My heart leaps for joy and I will give thanks to him in song."

A Trip to the ER
August 2012 changed my life.  It started out with an ER trip early in August one night when I was in so much pain that I had no other option.  I spent the next 8 weeks on Cipro trying to get rid of the worst bladder/kidney infection I'd ever had.  Only to find out afterwards that I still had blood in my urine and that I had a bladder disease called Interstitial Cystitis (IC).  I had never heard of this disease but the urologist and his staff quickly told me that there was no cure and it would be very painful.  Since I was already in a lot of pain that last part was of no surprise but the first part was hard to grasp.


A Whole New Way of Eating
I was told that the lining of my bladder had been damaged and that the medical community as a whole don't yet have a conclusive reason how it happened.  But once it was damaged it made eating and drinking much more difficult.  They gave me a diet to follow but admitted that the diet would be different for every patient.  Almost like an allergy to a food...IC patients each have their own list of foods and drinks that they can tolerate.  The one commonality is acidic foods.  Acidic foods will cause such pain that you won't want to eat that food ever again.  I'm not talking about a stomach ache.  I'm talking about feeling as though you've eaten glass and it's cutting you up inside.

So I went on the diet and quickly learned that the only foods that didn't put me into chronic fits of pain were unseasoned fish and raw vegetables.  Water was the only thing I could drink without causing myself pain.  But I even had to be careful with water because some water is very acidic.  Some of the most acidic waters I've found are actually bottled waters.

No more fast food.  No more Mexican food.  No more eating at restaurants and having the waiter pick me out his favorite dish of the night.  If a restaurant doesn't serve unseasoned fish and won't cook everything to my specifications I can't eat there. 

The Treatment That Makes You Sicker
About 2 weeks ago the doctor tried me on 2 drugs that supposedly would help me.  They wouldn't cure the disease but they would make me feel better.  So I took 1 of the pills and within an hour my vision was blurry, my head started pounding, then my arms and legs started jerking and aching as though I had a high fever.  So I took the 1st pill of the 2nd drug.  This was an even bigger mistake.  I started shaking so bad and felt true terror running through my veins.  2 hours later I started vomiting.  I was sick for 4 days.  I didn't eat.  I would vomit even at the sight of food and I never got out of bed. 

After calling my doctor and never getting a call back I decided that it might be time for a new urologist.  Praise God that day I had a hematology check up and my outspoken hematologist quickly told me that my blood work was not looking good and wanted to know what in the world was going on with me.  So I told him.  When I told him who my urologist was he said, "He is far too busy making commercials to be your urologist!  Promise me you will get a new one!"  So I did as well as force myself to try to make myself eat more so my blood work would get better.  I'll find out how successful I've been in a couple of weeks when he retests my blood.  At least I can talk now.  The day he tested me I was so fatigued I was having trouble talking and thinking.

A New Doctor
Two weeks ago I visited with my new urologists nurse practitioner.  I love her!  She talked to me for an hour and fifteen minutes.  I had brought my journal with a list of all my questions, what had been tried on me, what works and what hurts.  I also brought all tests results and scans with me.  I left her office with a new medicine that I actually had researched and asked the other urologist for but he felt it would not help me.  I took the medicine before I even got home.  It made my bladder pain decrease greatly.  I still have pelvic pain that makes it hard to walk but at least the bladder pain has decreased as long as I don't accidentally eat a food that hurts me.

IC Flares
Unfortunately with this disease I can do everything right and still have what's called an IC Flare.  This means that my pain level increases rapidly and becomes intolerable.  Last Friday I took a vitamin and didn't know that soybean oil bothered me.  Within 15 minutes I was shaking, crying, and doubled over in pain.  So I spent the next 4 days in bed with a heating pad sometimes and an ice pack at other times.  There are all kinds of other things that seem to cause me to flare up...highly stressful situations, hormone changes, and honestly rough car rides.  So I do everything a lot slower these days.

Tips That Help Me
Here are some of the things that I've learned that help me get out of a flare quicker:

• Acidopholus - I had a lot of itching and digestive issues when I first was diagnosed and taking acidopholus every day has really helped me with both. Many IC patients start out with a bad bladder infection and are put on antibiotics for months at a time. So I suspect that this maybe why the acidopholus helps but who knows. I figure if it helps and the doctor says it won't hurt me then why not! I was also put on Diflucan and Nizoral after having taken so much antibiotics and that definitely helped as well.
• Baking Soda Water - Since you are fighting the acid in the food from burning your bladder baking soda water is alkaline and seems to help me in about 20 minutes.
• Desert Harvest's Aloe Vera Capsules - I also have had good luck with Desert Harvest Aloe Vera capsules.  I tried Wal-Mart's brand of Aloe Vera and flared.  I bought a month's supply of Desert Harvest Aloe Vera to try.  So I will be able to see after a month if I still feel that they are helping me.
• Toviaz - I was given a generic of UTA, USTELL, for bladder spasms.  This medicine did nothing.  But Toviaz has helped me greatly.  I know it doesn't help everyone but for me it has stopped at least one of my symptoms and when you have a long list of them every little step is important.

Pelvic Pain
For me every IC Flare brings pelvic pain that is excruciating.  My pelvic muscles tighten up and of course raise the level of pain I'm in that day.  So after talking it over with my urologist I realize that this area has also been damaged and needs help.  The chronic pain from this area makes it difficult to walk and I spend several hours a day with ice on my abdomen and pelvic area to get everything calmed down enough to stand the little that I do.  This next week I'm going to start working with another specialist who will help me with the IC pain & pelvic pain.  I'm hoping that this will even bring me further out of pain.  So I can spend more time out of bed and back to living life!

Growing Through Trials
Throughout this illness I've had several people comment to me that I was so strong that they could never make it through all of this.  I'm not strong.  I cry like everyone else.  In fact I cry a lot these days.  But mostly I cry out to God a lot.  I praise HIM for my family and for my friends.  I pray that HE gives me wisdom through this.  That HE helps me to help other people that are going through this as well.  And I also pray that HE heals me or helps me to cope with the pain.

Psalm 34:17 "The righteous cry out, and the LORD hears them; he delivers them from all their troubles."