The other day I had a great blast from the past. I came across the video for “We Are The World” by the For Africa USA chorus made up of celebrity voices of the 70’s and 80’s. It was very uplifting.
https://www.youtube.com/watch?v=bfSYARbyVqA
Looking back is not always a bad thing, there are good memories and events that remind us of how far the Lord has brought us. I am posting my devotionals from some of those tough old days. The were originally posted for Rest Ministries, a website serving those living with substantial chronic pain and illness.
Today I want to post the story of my pain journey since 1996, then over the next few weeks I will post the devotionals.
I will try to briefly describe my medical journey with chronic pain and illness for the past 25 years. Things are going so well for me now (5/18) that most people would never guess that my body is not normal. My disease will be part of my life always unless the Lord has a new plan. Pain is a 24/7 deal for me. I live with at least level 3 pain (1-10 scale) daily, and it goes up to 5 once or twice a week. It can get to 7 or 8, but not often anymore. The pain scale goes from 0 as no pain to 10 as the worst imaginable. I have given birth naturally seven times, so I consider number 10 to be the final two minutes of delivery.
It began in 1996, I was 34. I was very suddenly getting a fever and weakness doing tasks that I had been doing for years. After six months of natural remedies and doctoring, some “pre-cancerous” cells were found in my cervix. Three weeks later they were mutating and multiplying at a very unusual and fast pace. A total hysterectomy was done in March of ’96 and my life forever changed. I was anointed prior to the surgery, so I was able to take the ensuing chaos as God’s permissive will. The surgery was quite complicated, I had varicose veins in my pelvis that were engorged and massive. When they exposed them in surgery they began to burst open. It was a mess and took three surgeons working for 6 hours to get the bleeding stopped. I can’t remember the exact number of stitches anymore, but it was between 50 and 80. I also had three types of infections afterwards and post-surgical shock. The cancer was the type that is fed by pregnancy hormones so I would not have escaped it had I gotten pregnant. But, the real game changer was a nasty disease that was sleeping inside me and was woken up into a monster. The threat of cancer was removed but IC took over.
Interstitial Cystitis (IC), is not the same as a bladder infection or a UTI. I remember having IC symptoms when I was 14 or 15 years old, but thought it was my imagination. Back then it was not even recognized by most doctors. For me it felt like I was having monthly cramps at all times of the month. I also had UTI symptoms that would come and go, I remember not telling my Mom because if I could wait it out a day or two it would go away. UTI’s don’t just go away.
Most people have a lining in the bladder that protects it, people with IC have thinner linings or gaps in it. The bladder wall gets ulcerated in 10% of the cases. This starts painful spasms and hot, salty , toxic urine on the sores makes all kinds of misery. For me it feels like hot shards of broken glass are being stirred around in my pelvis while someone with iron boots is stepping on me from the outside. Pelvic surgery ALWAYS makes IC ‘flare’. We didn’t know I had it, and the surgery had to be done even if we did know. The beating my bladder probably took while the surgeons were trying to stop the bleeding put me in a permanent ‘flare’, but we didn’t figure that out for an entire year after the surgery. In 1997 a scope of my bladder showed not just gaps in the lining of my bladder, I had no lining at all! And the surface of the bladder wall looked like raw ground meat (it should look pink like the inside of your cheek) and was over 66% ulcerated. The cause of IC is not known, nor is there a cure. So, I underwent dozens of procedures, treatments, and medications, but was in severe pain and disabled for the next five years. For about 9 months I had to use a wheelchair because walking started the spasms (7-8 on the pain scale). The spiritual benefits of this time period would take too long to describe here, but it was an amazing growth spurt. After a surgery to repair 1/3 of my bladder wall with a laser, in 2001 I could do light housework again. I then started wearing a fentanyl pain patch, a narcotic that is pretty strong. I also started swimming and found it helped my pain and function dramatically. My pain averaged 4-5 and I learned how to work with the pain. Diet changes helped some.
IC is not caused by stress, but stress will definitely and proportionately make it worse. And I had severe stress, some from being ill, but also from strife at home and in the church. My pain and functioning level went up and down because of this.
In early 2007, a tumor was found in my stomach. That surgery went very well and the tumor was benign, but again, I left the OR with an unwanted ‘souvenir’. The scar left behind caused a valve to get stuck open at times (post-gastrectomy dumping syndrome) and undigested food and raw stomach acid poured through me. So, then my stomach and intestines were also ulcerated. Then the stress at home and in church exploded into a crisis beyond description. Since then my family has been fractured and hurting and the distress of all that just complicated both conditions. More meds, and now IV treatments were added to my long list. More infections and more medical bills. More grace upon grace was given to me. Life was very unpleasant.
Some of the turmoil and distress improved and I was able to build a support system and get consistent medical care after moving to PA in 2012. I work over 40 hours a week and no longer use the pain patch. My pain is still very much there, but it no longer stops me like it used to. I must be very careful about my health as either condition can flare up without much warning or reason. I am so grateful to God for the journey. Had He not walked with me so lovingly and completely during my physical pain battles, I could not have survived the emotional pain and deep sorrows that my family crisis brought. So, if I seem weak, you know why. And if I seem strong anyhow, now you know why. BECAUSE HE LIVES, I CAN FACE TOMORROW.
