My Journey with Chronic illness and Chronic Pain Part II

My Journey with Chronic illness and pain Part II

If you missed part one please read part 1 HERE

In part one I chronicled my experiences and three lessons I learned I will very briefly recap.

Lesson number I: Lower your expectations of others.
Nobody can truly understand what you're going through. Do not expect them too. Don't be a pity party.

Lesson II: Seek help when you need it.
Finding a good counselor you can vent too is important. You can't get through this stuff alone. And you can't alienate your friends by constantly trying to get them to understand what they are not able. Tell them your limitations. Confide in a good friend. But there is a fine line. Find it and stick to it.

Lesson III: Do not compare suffering. Not your own or others. It serves nothing.
It is easy to fall into a trap of comparing your suffering to others. Maybe a friend is sick and you're thinking " They have no idea what sick is." This is not healthy. It's not fair to them either. Everyone on the planet suffers. Comparing suffering serves nothing. It does nothing positive. If anything it will only make you bitter.

Ok so where I left off was I was dealing with yet another new problem that became the most painful condition I have ever experienced. I have nerve damage from my old back surgery, scar tissue entrapping my pudendal nerve. Peripheral nerve pain is different than other pains. It can start off as just an odd sensation, pins and needles, lack of sensation, etc. Mine quickly turned into all of that plus a twisting tightening burning feeling and electrical like sharp pains that would send me screaming. This happened every single time I sat down or laid down. It was a nightmare.

I am going to be very blunt here.The nerve branches down into your pelvis from the base of your spine through both sides of your butt. Unlike most peripheral nerves the pudendal nerve does have some motor function. This is the nerve that serves our testicles, penis and rectal nerves. Guys you know how your scrotum can shrink or expand? Mine does this with a very painful burning feeling. It shrinks and expands and seemingly sometimes never stops. It also destroyed my sex life. Not only I am unable to get an erection most of the time, on the off chance I do sex is often very painful. The majority of my pain is in my genitals and my rectun. It literally feels like i have a sharp stick in my ass. and everything around it including my inner thighs. It also affects urination and bowel movements. So when someone asks where it hurts and they are not a doctor. I just say its pelvic pain.

So at this point when it first started happening I got deeply depressed again. Who wouldnt? I went to stanford to look for solutions. I was told this is a very tricky thing to treat. I tried a plethora of medicines. They like to treat nerve pain with Antidepressants and anti seizure meds, because it can help with peripheral nerve pain. I was very skeptical. I never did well on antidepressants the side effects were often too much. But I was willing to do or try anything including amputation to make it stop. They refused that request. Also muscle relaxers have shown to help some. You name it I have probably tried it. Opiate pain killers do not treat peripheral nerve pain as well as traditional pain but they do help. After months and months of trying different Anti depressants and Anti seizure meds to treat my pain, I was about to give up. It wasn't working or I would get some side effect that would force me off it. The lack of sleep was getting to me. Every night I would try every position you can think of. I was averaging about 1-2 hours of sleep a night. Nights were worse so sometimes I could get some rest in the day.

Normally they would treat this with a nerve block. But I am allergic to steroids. But Stanford came up with a new plan. Radiofrequency ablation. This is like microwaving a nerve till its dead. But this wasn't the normal ablation where they completely fry the nerve. They could not do that with this nerve without it effecting my bowels and bladder even more. They had a new technique that heated the nerve just enough to stop the pain signals. I had a glimmer of hope. It was enough to keep me going. The first part was test where they inject lidocaine into the nerve and if that works for a few hours, then technically the ablation should too. The issue with ablation is it's far from a permanent fix. You have to keep having it done every 3-6 months. I was worried about the out of pocket costs. I was told Stanford would pay for it and only bill my insurance for the nerve block. I was happy and grateful but skeptical they would continue to pay for each following one. They assured me they would.

The day of my test nerve block came. I was asked if I wanted to have any sedation and i declined. I wanted to feel if it was working. I was told to to lay down and put my head in this hole. Like a massage table. They had nice pictures taped to the floor. There were 12 doctors in the room. Some students. My lily white ass is sticking up. I'm feeling a bit vulnerable and I am fearful of needles. I decided to make a joke. And right before they started I said " OK stop looking at my ass" No laughs. Oh well. I thought it was funny.

Lesson IIII: Keep a sense of humor

They bring out these very long needles. The needles will be guided with some sort of imaging that allowed them to see what they were doing. They had to find the nerve on both sides. The first needle went in my butt cheek. I clearly remember a student asking of they were going through the crack. And I said loudly what???! The doctor said no we are not doing that. I was starting to regret not doing sedation. It was painful but not bad. But they were having trouble getting the right spot. Then they hit a nerve and it sent pain through me that caused me to scream. I heard murmurings that I had strange anatomy. For about 30 minutes they tried and I screamed. They finally gave up on that side and did the other quickly and relatively painlessly. I was told that is how it normally goes. On the other side I had a small anomaly on my pelvic bone that they would use as a guide and I did not have that. But it worked on my left side I had no pain. I was so excited! Finally progress. I went home and told everyone.

Refer to lesson number I: Lower your expectations.

The day of my procedure I called to double check everything was scheduled. I was given the OK. I had my sister drive me and off we went. We waited in the waiting room until I was called. I got undressed and then came a knock at the door. A nurse came in and said my insurance had declined the procedure. I told her that of course they did no insurance covers this yet. This was all worked out to only be billed as a nerve block and Stanford was picking up the rest. She said it did not work that way. I was livid. I demanded to see the doctor that promised me. Of course he was not in. I talked to several people nobody knew what was going on. I put my cloths on and left. Ill spare you the rest but this procedure was scheduled three more times and canceled again hours before every time. It ended up that yes Stanford would pay the rest but the insurance company still had to say to the procedure and they wouldn't do it. The doctor was not 100% honest with me. I was not the first one this happened to. It was happening to everyone who was trying to have this procedure. I was devastated.

Lesson V: Never give up!

It would have been easy to simply give up. I thought about it. I even planned and plotted my suicide. When that happened I self admitted myself to the psyche ward. Not a place of healing. But it did stop me. I just couldn't do that to my mother who is now elderly. I knew it would kill her. Again I sought help from a psychologist and a psychiatrist. I found a good regular family doctor who was sympathetic. We decided to start over.

OK Look for part III tomorrow which will be the last. There is a happy ending! If your suffering I hope you can stick though this wall of text and get to the last one. There is always hope.