Fed up with Doctors, surgeries, headaches, pain, you name it

[ktfabian]

Hi,

I know I haven't posted in a while, but I hope you won't mind a late night rant from an old member.

The last three years have been tough. I've had 3 surgeries on my right foot, the most recent in May to repair a torn Achilles Tendon. In addition to Sjogren's I have chronic back pain following 13 surgeries and have a morphine pump implanted to help with the pain. I also have costochondritis, fibro, horrible, nasty headaches on top of cluster headaches and am IgM deficient so I'm prone to frequent infections. I get Rituxan infusions every 6 months for my Sjogren's, but I'm 2 months behind right know because of the foot surgery and a surgery I'm having Monday to fix a broken morphine pump.

I'm so stinking frustrated. The pump broke just before my surgery in May. But when they replaced my pump because the battery was getting close to the end of its life in 2012, no one ever bothered to play the emergency alarm for this pump, so I thought I was hearing someone's alarm clock in the building. It started going off more and more often, and it still didn't occur to me that it was my pump til I went for my regular refill on June 3rd. Then they discovered it wasn't working and sent me to the only surgeon implanting pumps in our area now, one who wasn't familiar with me or my pump. He was going out of town for two weeks, so he called my pain doctor and told him to provide all the oral meds that were needed to keep my pain under control and me from going through withdrawal. My actual doctor wasn't there, and I got a PA who doesn't really like to write pain meds, so he just told me to keep taking the Percocet I'd been taking for my surgery and call when I needed more.

The first weekend was horrendous. I was sick to my stomach, had heart palpitations and the pain wasn't even close to under control. When I called about the extreme nausea and got the PA again, he told me to take more Tums. Didn't even come close to helping. My son, whose seen a couple of friends go through withdrawal, actually talked me through a lot of it.

I saw my family doctor that Monday, and she said I needed to be on long acting morphine with short acting for break through pain, but I have a contract with the pain doctor and couldn't accept a prescription for the meds from her as much as I wanted to. I did call the pain doctor's office and the PA agreed to go with her recommendation since my pain dr. was out of town.

That was early June. My surgery is finally scheduled for Monday. My pain can no longer be rated on a schedule of 1-10, and even tho the pump has worked about 15 minutes out of the last 7-8 weeks, they won't increase the pain medication for fear I could overdose if the pump turned back on (it hasn't). I've developed killer headaches that are even worse than my usual cluster headaches and migraines and I've told my husband,  I've been doing this for 24 years, since my first back injury and the 22 surgeries since. I honestly don't know if I can go through this again.

The reason it's taken so long to get the surgery: my pain doctor has taken most of the summer off, so he's not there on the day's the surgeon is. The hospital where the surgery is being done isn't set up (don't ask me what that means) to fill my new pump with the 2 meds I have in mine, so after the surgery, we have to get in the car, drive to the pain doctor's office and have him fill it under floroscopy. Usually, they just feel around the pump with their fingers until they find the fill port (it's implanted in my abdomen), so using the floroscope will let them fill it without poking around a new surgical site.  I guess I should be happy for small favors.

My Sjogren's is flaring, so my Rheumatologist had doubled my medrol, but I've had constant sores in my nose for about a month and every joint I own feels like it's been attacked with a baseball bat. And I'm just so frustrated that all of this has taken so long.  Not only has it put me through weeks of pain, but I've also had to hold off on rehab for my foot, which doesn't sound all that major, but I tend to create lots of scar tissue, so the sooner I get it moving, the less chance there is of that happening. I've been doing the stretches I can do here at home.

I know I'm in the final stretch, but I'm just SO frustrated, angry, in pain,  and want to chop my head off to get rid of the headaches and it makes me wonder how I'll react when the next crisis hits. I've been living from crisis to crisis for too long and don't think I can do it much longer. If I make it through the weekend without cutting my head off, I guess I'll be able to reassess how I can handle the next   crisis.

Oh, and in the middle of all of this, my husband has had to put off a total knee replacement so he can take care of me because there's no way I can take care of him right now.

Sorry this is so long. Thanks to those who make it to the end,
Tracy

[irish]

Oh, Fabian, I am so sorry that you are going through all this. It is beyond me why there has to be so many hoops to jump through to get something done. I think it has to do with all the regulations that are around lately. I don't get it and it makes me mad that you and so many others have to be so negatively impacted by this.

The way to treat pain sound so simple on paper but when it comes to implementing the plan it suddenly gets so darned complicated. Hang in there is all I can say cause you have been riding this bronco for a long time and it sounds like you are getting close to the end. Good luck and many prayers and hugs to you. You and your hubby have been through a lot over the years girl. Keep us posted on how you come out with all this. Irish

[eija]

Hi Tracy,

I'm so sorry you're suffering so badly. Hopefully the oncoming surgery makes it easier for you. I really hope the best for you.

-e-

[ktfabian]

Thanks Irish and Eija-

I'm counting down the hours til my 7:30am surgery Monday. Thanks for understanding and the good wishes. I originally had plans to clean and get paper work done this weekend while my husband is at work, now I've decided to just relax, do what I can and let the rest go. I really don't have much choice in the matter, and this way I'm not disappointed in myself for things I didn't get done.

Thanks again,
Tracy