3 month update

Weren’t you diagnosed with something? How the heck are ya?

I shared my path to discovery of the IC crisis in an earlier post. You can find it HERE. I am a little over three months into this permanent lifestyle that affects not just me- but the whole family. I am quite sure they all have opinions on the subject.   It seems like it’s been an eternity. For sure this is a daily walk and challenge that I am trying to come to grips with. I thought I’d post a question and answer blog of the most popular questions I get.

What is IC, Interstitial Cystitis?   IC is recurring pelvic pain, pressure, or discomfort in the bladder and pelvic region, often associated with urinary frequency (needing to go often) and urgency (feeling a strong need to go). – See more at: http://www.ichelp.org/#sthash.5tuwdPho.dpuf

So, yeah- the lining of my bladder has seen better days and now this cantankerous organ rules the roost.  It is cracked and inflamed. Many things like stress and food/drink related trigger painful flares. Even the hidden ingredients in shampoo, bath soap, deodorants, and laundry soap are potential hazards for flares.  These flares can last anywhere from a day to days depending on severity. The flares affect not just the bladder but the whole pelvic floor. The “flare” feels like a caveman dancing a jig in celebration of discovering fire. In honor of that great discovery he built a bonfire in my gut.  The prescription for a flare is rest, strict dietary cautions and pain management.

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Photo Credit: Lena Easterling

What can you do for that?  Surely something can be done? There are a couple medical procedures to help alleviate pain. I have been researching and consulting with other patients and my doctor. They are very invasive, painful procedures, and the pain relief is very short term- only a week relief for most. Some go so far as to have their bladders removed.  The prescription meds cause weight gain and are tough on the wallet.  I do not want to be dependent on prescription pain medicine and am not quite ready to toss out the offender.   I have chosen to take a more natural route.  I have found a medical doctor that believes in using food and herbs to make things better along with medicine if needed.  I see her on a monthly basis for over an hour sometimes discussing our plan.

I am still at the baby steps stage- very wary of eating the wrong thing.  I have a very critical diet I have to follow. I feel like I am doing well.  I do feel better mentally with clarity of mind.  Physically, my body doesn’t always cooperate. I have lost a number of lbs. and inches as a positive result-but that has not been the goal.  That being said, food/drink is the major contributor to discomfort.  I am currently restricted from all Gluten, Wheat, Corn, Soy, Rice, Dairy, Chocolate, Coffee, Nightshades, Vinegar, Citrus, processed foods (sausage, lunch meat), and foods that contain Tannins (beans, nuts, berries, some veggies).

 So what can you have?   I can have water (non-chlorinated), Meat, eggs, some veggies, coconut products (flour, oil, and milk), melons, salt, pepper, & ginger. Very sparingly I can have pineapple and bananas. On a rare occasion, once a month I can splurge in this coffee alternative (we call it my “Coffee non-coffee”) that is herbal that I love to indulge in or a piece of chocolate  when Hunny isn’t looking. I have to be very cautious to not over do as both are in the NO NO category. I have found this at health food stores and online from Azure Standard.

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Do you eat out?  I don’t eat out of my house very often.  The only place I eat out is my mother in laws.  Twice a month we eat at a Mongolian Grill when we go grocery shopping.  I can have meat and veggies and they are so sweet to clean the grill so there is no cross contamination.   I ate out after my last doctor visit.  I had a steak and veggies- that cost me two days of pain and discomfort. It’s hard to know what seasoning they might put or if they cleaned the grill from other contaminates.

What happens if you eat wrong? Severe abdominal pain, IC ranks #3 in a top ten list of most painful diseases in Prevention Magazine. The same survey rated cancer as a #6. My bladder swells to feel like a ruby red grapefruit and my whole abdomen is a raging forest fire.  I would  be back in the hospital for pain relief.  Then home off my feet for days of recovery.

Is it cancer? No it’s not considered cancer.  It is considered worse because it’s life long, no cure, and just as painful.

Can men have this?  Yes, they can- it’s rare but I know a fellow that’s battled it for two years.

Have you tried?  So my human digestive system is a dainty princess now, very delicate and temperamental.  I have to be so careful. Many sweet, concerned friends have made suggestions:   No, can’t do calcium- digestive issues.   Vitamin C- no can’t tolerate it. Cranberry Juice- big no no, this isn’t a UTI.  I’ve had several urine test- there is no infection.

Are you taking?  Probiotics- yes, Magnesium- Yep

What do you take for pain?  I do try to manage the flares without meds as much as possible. I do have a high pain threshold.  However sometimes it can excruciating and confining.  I do take ibuprofen, Tylenol, and Antihistamines like Claritan have helped.  I don’t want to become dependent just to function as that can cause a domino effect of other problems.  My doctor offers a UT compound; it is a mixture of herbs I also take three times a day.  It has made the biggest difference out of everything.

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But you don’t look sick?  There are more women that you think that suffer silently with Chronic Illness.  They have IBS, Fibromyalgia, migraines and many more. Some think that women do this to get attention.  I’m like really- I’d pick something less painful and a lot less time consuming.

Has this affected other parts of your life?  Absolutely, I can’t go anywhere without knowing there will be a bathroom and where it is.  I have trouble on long trips, movies are no fun when you have to leave several times to potty, and I miss a lot of church services. Shopping is an ordeal; I generally have someone go shopping with me. Vacations are out of reach of reality for now.

I’d never heard of this condition until I was diagnosed.  I was fortunate for a quick diagnosis- even though I’d had underlying symptoms for years-“that were all in my head”.   Some women go years of being in pain before getting an answer because doctors don’t know much about it and IC doesn’t test out like other conditions.  I am very blessed Hunny works to provide for us and I am able to stay home to write.  Many women have lost their jobs because of intolerable pain and absentness from their post.  I am thankful for my children who fill in the gap with laundry, dishes, and cooking when I cannot stand.  I am thankful for my church family for constant prayers and wishes when I’m absent.  I am thankful for my coffee loving friend who has her own plight… she talks to me all hours of the day and night to share each other’s woes in prayer.

Until next week, I leave you with one of my most treasured scriptures I cling to, And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me. (II Corinthians 12:9)

In HIS grace,

~Lena

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