Fighting The Pain

Chronic pain is probably the biggest stressor in my life. I have had it so long that I tend to block it out, but it still wears me down. I often don't realize how bad it has gotten until I cannot sleep. Then it is past time for a visit to the pain clinic. 

Most of my severe pain is caused by osteoarthritis, which is something that is hard to treat successfully. My two worst areas - my left shoulder and my neck - have been treated in the past by steroid injections every 6 months or so. My neck pain, which is cause by arthritis and bone spurs, finally got bad enough that my pain specialist recommended radiofrequency ablation of some of the nerves. Both of my parents have had it done and report good results and my specialist said it should provide relief for a year or more. 

Of course, they can't just go ahead and do the procedure. Any and all insurance companies require tests to be sure the procedure will work. So first they go in and inject lidocaine in the affected areas and I spend the day tracking how much relief I get and for how long. If the relief is 80% or more for at least three hours - which I got - then they do a second test. This time a stronger local pain medication is injected (I can't remember what it is called) and I again track how much relief I get. This one was also successful so we scheduled the ablation. Now, these two tests need to be to weeks apart. So I get the lidocaine, I get a couple hours relief, then I hurt like crazy for two weeks. Fortunately we were able to schedule the ablation just three days after the second test. 

For the procedure itself I for the first time decided to be sedated. Usually I just deal with the needles. But burning nerves sounded sufficiently scary that I wanted to be doped up. Unfortunately I wasn't dopey enough. I had to use a different doctor for the procedure than I usually use because I could only have it done on days my dad was off work. Obviously I couldn't drive myself. I also found out the day of that they would only do one side that day and the other side would be done in two weeks (what is it with two weeks?). The doctor was OK, but he didn't communicate with  me like my usual doctor does. The needles/probes need to go into four spaces between vertebrae on each side and it took the new doc forever to get the correct spots. He ended up calling in nurses to pull my shoulders down so he could get to the bottom one. After all the shifting and poking, the actual ablation was nothing. And the sedation was light enough that I was almost immediately able to get dressed and leave. 

Since then I have been in hell. The left side of my neck is a bit sore, but feels a lot better. Hooray for ablation and steroids. But by comparison my right side is absolutely killing me. I have been unable to bock the pain so I am wearing lidocaine patches and using diclofenac gel. As bad as the procedure was, I cannot wait to get the right side done so I am no longer lopsided. And I have made a note to make sure that I always use the doctor I am used to. 

While I wait, I am unable to wear any of my racerback bras because they pull on my neck and make the pain unbearable. And no matter what, my neck is agony by the end of the day. I plump up my pillow and lie down and just let my neck rest. 

One more week. 

Tired and Angry

Ever since my major break in 2012 I have not been able to process anger. It is like the part of my brain that uses that emotion was damaged or bypassed. I has caused some major problems emotionally because whenever I was faced with a situation where I would normally get angry, I instead would get sad and confused It just didn't compute.  

Well, I think that has been fixed. This past week I have been downright irate. 

First, I totaled the car. And the cop determined it was my fault. I was pulling out of the condo park where I live and I had to creek the nose of my car into traffic to see past the parked cars. This is a constant problem because there is no red zone painted at the entry/exit point so people park right up to the edge as if it were a driveway. Well, this time a truck was coming that I didn't see and he took the front bumper section and the headlight right off my car. His truck was also totaled because my car caught on the side of his truck and scraped down the side, catching the back tire and breaking the axle. He says he wasn't speeding - the speed limit on the street is 25 mph - and I was barely creeping forward. The cop who came to do the police report apologized for giving me the ticket, but he said that by law the truck had the right of way and I was technically failing to yield. The only good news is that the ticket is only $150 because the cop did list it as a minor infraction. 

OK, so the crash make me cranky. It was the first auto collision I have been in since the mid 90s. I shook me up bad and I feel absolutely awful because now we need to buy a new car. 

Well, I also aggravated my left shoulder. I didn't realize it at first because I had a major panic attack following the crash and those always leave me aching and exhausted for days. When I realized there was something bad with my shoulder I called my doctor's office and he squeezed me in on Thursday, a full week after the crash. I didn't go to Instacare because I rarely get good results. I need someone who knows my history. So, I go into the doctor's office, OCD on overdrive, and he determined that I had separation in my shoulder and it needs to be immobilized. He then sent me to get x-rays. I got done with everything by 4 p.m., too late to hear back from the doctor about the results. I rigged a sling with a scarf from home tried to keep my shoulder from moving too much. It did bring the pain down some, so I figure that is probably the way to go. 

Well, here is where the major anger comes in. I checked the My Health site for InterMountain Healthcare, which has test results and such. My x-ray results posted by 6 p.m. I set my alarm for 9 a.m. the next morning and I called and left a message for my doctor's medical assistant saying that the results were posted and couldn't they please let me know what to do. This office is only open half a day on Friday and apparently my test results weren't important enough to squeeze into the short day. Usually I at least get a message saying they don't know yet, but I got nothing. No phone calls, not voice messages, and no messages on the My Health site. 

I was getting pretty cranky by then. I went onto the My Health site and took a look at the x-ray results. For patients it doesn't show the pictures, just the technician's notes. It said that there was no significant differences compared to the shoulder x-rays taken in 2018. Now, my doctor's exam showed definite separation and my left shoulder was hanging noticeably lower than my right. So I looked up the x-rays from 2018 and it showed the damage to the joint, including the fact that the ball of my shoulder was resting low in the socked. It other words, there was separation and probable damage to the ligaments and tendons.

These x-rays were ordered by and examined by the doctor over at the pain clinic, not my primary doctor. Yes, the x-ray showed degenerative arthritis, and that is what they have been treating. But nothing was done about the other issues. I have been getting steroid injections in my shoulder for 2 years, which has helped, but every time they give me exercises to do, it makes my shoulder worse. 

Now, I'm not a doctor. I'm not a pain specialist. I'm not an x-ray technician. And because my doctor couldn't be bothered to get back to me on Friday, I only have my own interpretation of the x-rays. But if there is no significant difference between the 2 x-rays that means this damage has been there for 2 years. and no one noticed. I have been getting the wrong treatments. 

I am sitting here with a scarf wrapped around my arm with my shoulder aching and I am downright pissed off at this point. I have found my anger again. I am tired of making excuses for doctors being too busy for me or not getting back to me because other people might be more sick or injured than me. I am angry that having my shoulder in a make-shift sling has done more for the pain than any of the steroid shots or exercise. I just want to scream at someone, but it is Sunday. There is no one to scream at. 

I am tired of this. I am angry. I just want to get the treatment I need. 

And More ...

The reason I named my blog and my Facebook page Schizophrenia And More is because my primary mental illness isn't the whole story. As I have mentioned before, I am actually schizoeffective, which means that I have schizophrenia plus other brain disorders - bipolar, anxiety, OCD, and depression. But even that isn't the whole story.

In addition to my brain disorders, I also have a host of other health issues. I have multiple autoimmune disorders, including Hashimoto's Thyroiditis, autoimmune-triggered chronic urticaria, progressive protein intolerance triggered by the celiac gene, and Reynaud's syndrome. Basically my thyroid doesn't work; I have constant hives because my immune system is attacking my immune system; I cannot eat any meat, dairy, gluten, or nuts; and I painfully lose all circulation in my toes and fingers if I get too cold. I also had polycystic ovary syndrome, but that was obviously cleared up by getting a full hysterectomy. For the others I have to take two different thyroid supplements, I have a very strict diet, and I am on anti-rejection medication to keep my immune system from attacking itself.

To add insult to injury, I also have system-wide osteoarthritis. This includes bone spurs in my shoulders and my neck vertebrae. There isn't much I can do about it except try to keep moving. The special pain meds that are on the market are all sulfa based, which I am allergic to, or they are opioids, which trigger my schizophrenia. The pain clinic I go to uses steroid injections in my joints to help with the inflammation, which is marginally effective.

The past 2 or 3 weeks have been rough. I have had no motivation to do anything. I couldn't get myself to do any yoga or other exercise. I have basically been switching between being totally stagnant and being frantic. I couldn't focus on anything and I was constantly nauseated.

It finally sunk in that the reason I couldn't focus was that I was in extreme pain. I have had chronic pain for so long that I just blank it out. By the time I realize I am in pain, it is at a 7 or 8 on the pain scale of 1 to 10.

I called the clinic and got in to see my specialist. It turns out that I hadn't had any injections for more than 6 months. Oops. He got me in the next day for injections in my neck. They do four on each side in between the vertebrae. The first couple days after the injections are rough. I ended up with a migraine. But it is finally settling and my brain is starting to clear. And my nausea has subsided.

My "and more" is no minor thing. It is maddening trying to figure out which condition is causing my depression, nausea, mania ... whatever is going on at any given moment. It is an impossible balancing act.

Mind And Body

One of the flaws in our healthcare system here in the US is that the mind and the body are treated separately. It has taken a couple decades for me to find a primary physician, and OB/GYN, and a psychiatrist who will actually talk to each other about what is best for me.

Communication between health care providers really is vital. For instance, my hormones were so out of wack thanks to polycystic ovary syndrome that I would dive into a suicidal depression every month. I took depo shots every month, but I was still having major problems. I also had pain from fibroids and cysts. My three main providers. had a conference call to determine if it would benefit me to have a hysterectomy. They decided the surgery was necessary and the three still keep in touch to make sure I have the right hormone replacements to keep my moods even.

My primary physician and my psychiatrist also keep in touch because of my chronic pain, which always affects my mental state. I have widespread osteoarthritis as well as chronic nerve pain in my neck and shoulders. If the pain is bad, my mental state deteriorates. For instance, right now we are having a typical February in the Desert Southwest. During the day, it gets up into the low 60s, which is wonderful. But then it drops down to the high 20s at night. The fluctuations make my arthritis flare up and then I tense up, which worsens the nerve pain. The pain right now is triggering my depression and my OCD, which is a bad combination. I want to pick at my skin and pull out my eyelashes. I also want to scrub everything because I can "see" germs on every surface. But the pain and depression sap all my energy so I can't do much. Not being able to satisfy my OCD worsens the depression and if I don't keep on top of the pain and depression it can trigger a psychotic episode. This happened a couple of years ago and I ended up in the hospital for two weeks until we got it under control.

Thanks to my doctors talking to each other, I now have medications and other methods to keep the pain under control. If they were working separately like most do, I would face hospitalization every winter. Also, my primary physician now has me going to a pain clinic to deal with the nerve pain. And he is staying on top of what the new doctors are doing so that the new treatments and medications don't clash with what I am already taking.

This sort of communication between health care providers really needs to be the norm, not a rarity. We need to start thinking of the mind and the body as one thing, not separate.

Cannot Catch A Break

In my last entry I mentioned that I was on the edge of a breakdown. Well, it turns out I was in the middle of one. There is nothing like a high-functioning psychotic episode to make life "interesting". I am glad I didn't have to go into  the hospital, but the recovery has been rough. We ended up doubling my anti-psychotic temporarily, then made it permanent. And I have had a lot of trouble giving myself time to recover.

According to my psychiatrist and several studies I have read, any type of psychotic episode damages connections in the brain. When you are young, the brain can rewrite new pathways relatively easily. But by the time you're my age, nothing heals fast. And the disconnect while the healing is going on is rather disturbing. When I have been in the hospital, I can always tell myself it really was that bad and I need to give my brain enough time to rewrite those damaged pathways. But I was home the whole time with no on-hand medical support. I lost days to memory loss and dissociation while I was trying to heal. I am just now getting some "normal" function back, but it is different. Every time I have any kind of psychosis, colors change. Sounds change. Textures change. It's like waking up and some sort of filter has been put over my senses that makes everything softer, or harder, or just different.

So, I'm finally coming out of it. Everything seems more blue - even sound, which is hard to describe - but I am connecting and functioning better. Which, of course, means that something else has to go to hell. I have had intermittent problems with my upper back for years, but I always thought it was part of the nerve pain in my shoulders. Well, about a week ago we had a really nasty storm move through and my arthritis flared up bad. I'm pretty sure they could smell the arthritis cream I was using on the other edge of town. But even worse, my back felt like I had pinched a nerve or dislocated something.

I couldn't get an appointment with my primary physician because he was out of town. The pain was so bad I went to Instacare instead. It was a horrendous experience: A Monday morning in the middle of flu season. I was there 4 hours and was wearing a face mask the whole time to hopefully ward off all the nasty germs people were coughing and sneezing into the atmosphere. That was a week ago and my chin and cheeks are still raw from the mask rubbing - and I still caught a nasty chest cold.

I finally got in with a doctor and he immediately sent me over for x-rays. When they came back, he told me that the problem was osteoarthritis in my spine. He actually said that he had never seen arthritis that severe in someone as young as me. Yay! I'm an overachiever! He showed me the pictures and even I could tell it was bad. There were bone spurs and rough spots all over the place. And he told me something I have probably read before but managed to forget: That osteoarthritis is not area specific. Yes, it is more likely to form in joints that have experienced trauma, but once the body starts producing the extra bone deposits, it can occur anywhere in the body.

This past week I have basically been in shock. The Instacare doctor gave me prednisone and a muscle relaxant to bring down the inflammation in my shoulders and back, with helped at least temporarily. And he directed me to some OTC pain patches that I can put right on the bad spot. But I have just been floating. I left a message for my primary physician and left him a message, but other than that I just haven't been able to cope. It is bad enough I have to deal with errant messages in my brain, but body-wide arthritis? Bone spurs rubbing on my already overactive nerves? WTF!?

My doctor's MA called this morning and told me they were sending a referral to a pain specialist, the same one my mom sees. I hope something good happens because I feel like I've had the wind knocked out of me. (Or maybe that's just the chest cold). I don't want to deal with yet another new doctor. I don't want to go into a new place and try to explain my many issues, mental and physical. I am panicking and I don't even have an appointment yet.

I am trying to hang on. I have fallen on my face again and I am just too exhausted to get up again. Not right now.