Decisions

Image by Jan Alexander from Pixabay

It seems like I often stay away from here more than I intend to. I will come here and sit and think of a hundred things to write and feel like none of them are worth actually putting into words. I have some ideas for posts I want to write about that I think are interesting, but I just can’t get those out right now. Things just aren’t settled enough in me to get the words out right, I’m too self absorbed, I guess, to sit down and write about anything intellectual. So for now, if you will hang in there with me, you are going to hear more about me.

I made a huge decision this weekend, I’m backing off on some treatments. Yep, you heard right, I’m so tired of it all I’m taking a break. This is simply taking way too much out of me. More importantly, it’s taking way too much out of Stuart. He isn’t complaining, but I see it. I have at least 1 appointment a week, normally 2, often more. He has to leave work early at least one of those days. If I have an appointment at the pain management doctor he has to take half a day off because it’s an hour away. He also has to do most of the dishes, the laundry….he’s really an amazing man. Luckily we found a housekeeper and she will be coming in starting next Monday once a month to do the major cleaning. We still haven’t finished getting all our moving in stuff straight and we have been here 2 months. I simply cannot do it. We are both so overwhelmed it’s crazy. He’s being made to feel like he’s having to choose between me and work. That’s going to make him hate his job real quick, he’s already talking about looking for another one. I’m freaking out about that. He has to feel better about things. I have to take some of this off of him and the only way I can do that is to remove some of the responsibility from him. Getting rides to doctor’s appointments is not a solution. I cannot hear well enough in the appointment to handle it alone, he has to be there to help me answer questions, and to help me understand what the doctor says. He also needs to be there in case I crash. I often have vertigo attacks due to the stress that comes with these appointments, I would need someone there knows how to deal with that.

I’ve canceled all the pain management appointments, I’ll consider going to another clinic if I can find one closer to us that has appointments at times that won’t take Stuart away from work so much. I do admit I’m having more migraines this month since the occipital block wore off, but it’s not worth the stress of going an hour in one direction to their office. It’s a hard trip, and I don’t really like the doctor. I see my psychiatrist next week, we are normally able to get a late afternoon appointment with her, so Stuart doesn’t miss work, but if I get approved for the Ketamine I’m not sure if I’d have to go in earlier, so that would have to be part of that decision now. I’m changing my primary care physician to a doctor that is very close to me, so I it will be very easy to get there. I don’t think I need to go to a kidney doctor any more, so I’m canceling that. I will keep seeing my migraine doctor, I don’t see her but every 3 months, so it’s not that bad. And if Stuart can’t go, my neighbor said she would take me. I know I can hear her, and I think she will listen to me. A lot of doctors don’t listen without Stuart backing me up, there is definitely a prejudice against women in the medical industry, we have really noticed a marked difference in how doctors treat me when I’m alone and how they treat me when Stuart is there to back up what I’m saying.

There has just been so much going on and I just can’t see where there has been that much improvement. Yes, I do see some improvement, but when you are doing so many things how can you know which one is the one working? I started the Aimovig 4 months ago, they say it takes about 3 months before you can judge if it’s working, well that was the same month I got the occipital block, so I don’t know if the shot or the block was the one working. I think it’s a wise idea to find out which one is helping before I keep spending money on both. I’m also not fond of the idea of continually putting steroids into my body after having avascular necrosis. They told me that it was most likely caused by steroid use and that it’s possible to get it in other joints; I don’t want any other bones to die, having one hip replacement is enough. However, if the occipital block is the one that worked then they can cauterize the nerve and that could last a couple of years. But they want to do an occipital block on the other side first and then they plan on doing injections in my back to help the muscles that won’t stop firing….that’s a lot of steroid injections. I think seeing another pain specialist to get another opinion might be a good idea anyway. I think my back might need some myofascial release. I found a pain clinic that does that kind of thing too, they are only 30 mins away, well at least I’m getting closer…sigh. First I’m taking at least a month off from that kind of stuff. Next I’m going through my medications and deciding which meds I know are working and which ones I’m taking because I think they may be doing something and I’ve been afraid to stop just in case. I’m tired of taking things that I’m not positive are helping. Lots of decisions to be made.

I do have some exciting things I’ve been doing and coming up, including a chronic pain group I’ve been attending and a migraine retreat I’m going to in April, I’ll write about those soon, I promise, but this is getting long. So I’m going to close and get this posted before I decide it isn’t worth posting and scrap it.

Have any of you decided to just take a break from some treatments? I’d love to hear your experience.

Doctor of Pain

PAIN drawing by W. Holcombe

We have a little joke in our house about how the Pain Clinic sounds like it’s a place where you are going to get pain, a little S&M anyone? It should be called the Pain Relief Clinic don’t you think?

My migraine doctor (a neurologist that specializes in headache disorders) said she was sending me to a pain specialist for my neck pain; you can understand my confusion when I ended up at a Spine and Sports Medicine Center. I’ve been to a sports medicine center before and it was filled with lots of sweaty people doing exercises and recovering from surgery. To say I was a bit wary of this appointment was an understatement.

The confusion ended once I talked to the doctor. This may be called a spine and sports medicine center, but it’s not like any sports medicine center I’ve been to before. Stuart actually said he wondered if they used that name because of the negative connotation association with pain clinics. I think it may also be because they mostly treat people with spine issues. But yeah, this was different.

They took a thorough history, that was very hard for me to go through, I kept breaking down when I was filling out the paperwork as I was realizing just how long I’ve been living in pain.

These are the things, that I know of, that are causing pain to my head, neck, and back area (this does not include pain in other areas). In 1973, at age 10, I broke my right arm and found out I had a bone tumor, that would end up with 5 more breaks, and a major surgery including a bone graft in 1978, leaving me with my right arm shorter than the left and recurring pain. May of 1974 I had my first migraine, two months later I woke with a headache that never went away. In 1991 I fractured my 7th cervical vertebra, and had a severe contusion to the back of my head (I now have arthritis in my neck). In 2016 I had akathesia as a side effect from a medication that has left lasting effects to my back. I hope that doesn’t sound like I’m whining, really I’m not, it’s just the way it is.

After we talked about all my symptoms, the different types of pain, the numbness down my arm… and after we went through all the things I’ve tried to relieve my pain….PT, chiropractic, supplements, Botox, medications, acupuncture, massage….and how little they worked we discussed my next option, injections.

The first injection I’ll be getting is on Monday, it’s a corticosteroid injection to the right and between the C-7 and T-1 vertebra to address the nerves that run down my right arm. Every day I wake up with my right arm in severe pain and it has electrical sensations running down it, and my hand is weak. They decided to address that first. I’m very nervous about getting any steroid injections because of the risk of Avascular Necrosis. I had AVN in my left hip causing me to get a hip replacement, they believe it was caused from steroids. You can read more about that here. She said that most of the injections in the future would not be steroids, so hopefully this won’t do any harm. But what choice do I have? My quality of life is greatly diminished right now.

She sent me home with a prescription for a muscle relaxant and orders for an x-ray. Now I’m just waiting for Monday. I’m slightly nervous about this only because I was asked if I wanted sedation. Why would someone need sedation for this? They give you a local before the main injection. I’ve had major injections in my hips, and I’ve had lumbar punctures and patches in my spinal cord, I was never offered sedation for those. Am I wrong about how bad this is going to be? I had an injection for pain in my neck when I fractured it many years ago, I didn’t have sedation then. I was given something to calm me and it made things a little hard actually because I couldn’t stop laughing.

Have any of you had these kind of injections? What was your experience?