Shauna's Life In Pain

Radioactive Iodine and Whole Body Scan

noreply@blogger.com (Unknown) — Mon, 19 Aug 2024 20:51:00 +0000

After the 4 masses on my thyroid had been removed along with my entire thyroid, it was time for treatment, to kill any remaining thyroid tissue (because cancer can grow on this tissue) and to kill any distant site cancer that had possibly metastasized.

Radioactive Iodine (RAI) I-131, is unique in the fact that it is the only chemotherapy and radiation treatment that is given together in one oral dosing. It is also unique in that there are usually very few side effects compared to other forms of chemo. No major hair loss, weight loss, energy/appetite loss. There are possible side effects that can show up both immediately and some weeks later. If the thyroid cancer was to return to distant sites and cannot be treated with RAI, is RAI resistant, or certain types of thyroid cancer-these do need treatment with more traditional chemotherapies.

There are very strict rules when receiving RAI. You must plan for it beforehand. You will be in isolation for 10-14 days when you have your first RAI dose. This treatment dose is always higher than subsequent diagnostic doses.

You need to have a bedroom and a bathroom that only you are going to be using. You will be radioactive after receiving the RAI and MUST be in isolation. You can affect other's thyroids, as the RAI binds to Iodine, which is otaken up by the thyroid. Being exposed to you would be very harmful to their thyroids, and animals also. You will most likely be following an Iodine-Free diet before the scan. Since Iodine is taken up by the thyroid, you do not want to be eating food with iodine and adding to the levels of iodine before the RAI and whole body scan. Personally, my doctor did not recommend the iodine-free diet to me.

Staying in the hospital used to be done but insurance doesn't pay for that anymore, and the room must be covered in plastic, meals are left at the door, nurses do not enter the room. Staying in a hotel is not recommended as you would expose the cleaning staff and the next guests to the RAI.

You need to plan using either paper plates and plastic utensils , using a designated trash bag for just your trash. This bag must sit away from other people and when finished, kept in the garage or a room away from others for two weeks before you throw it in the main trash to be disposed of by your city. Trash trucks are scanned for radiation before they dump their load. They can actually trace where a bag of high radiation came from if needed. Letting your bag of trash sit for a couple weeks allows the radiation to dissapate. We are responsible for other people's exposure to us, and our radioactive items. You can also use one or two regular plates and regular utensils that you will be washing separately from anyone else in your home. Buy some sour candies to suck on as RAI affects the salivary glands and sucking on something sour will keep you salivary glands working at their best.

In the bathroom, flush the toilet twice after using. Keep any tissues, etc in a separate trash bag. If you do not have the ability to use a bathroom by yourself, make sure you keep it clean for the other(s) using it. Water alone is more effective to rinse the sink and shower than using a cleanser each time. Keep your towels in your room. You may have to come up with new sleeping arrangements for this time, asking your mate to sleep on the couch so you can be in the bedroom with a closed door.

Of course the perfect situation is living alone, but you will have to figure out what works best for your situation.

My experience taking RAI was- I started on Monday, going to the hospital for an injection of Thyrogen, which lowers your TSH. Tuesday, I went back again for the second injection of Thyrogen. Wednesday, I went to the Nuclear Medicine department and the tech got my pill from a steel case, then inside that was a very thick, egg-shaped steel holder. She was covered in X-ray gear, with the addition of a high cover over her neck to protect her thyroid. The doctor stood about 6 feet away. She opened the steel egg and poured the capsule into my hand and I took it immediately. The moment I swallowed it, I was radioactive. The doctor stepped farther away as I was led out by the tech. We walked quickly through the hospital.

You have to arrange transportation directly home. Driving yourself is best. If you cannot do that, sit in the back seat on the opposite side of the driver. Do not use public transportation. When I was taken outside the hospital to get my car, the tech stood with me far away from others. I had valet parked and she told the valet to leave when he brought my car, and she made sure I was in the car safely.

Isolation begins the moment you get home. You will be in isolation for 10 to 14 days. This time allows the Radioactive Iodine to kill any thyroid tissue that is cancerous. This is a great time to catch up on your reading!! I'm a big reader so that took up a lot of the time. Get some light reading too, magazines are fun. Having a TV in the room is essential--binge on your favorite show! I wrote a lot too. Talking on the phone is also a good way to feel connected while you're alone. Reach out to friends and family, who should know about your treatment so they can understand you may need more connection on the phone than usual during this time.

Some patients can feel lonely during this couple weeks of isolation, but preparing with the above items will make you feel less alone. The time goes by quickly after all.

When the isolation time is up, you will be scheduled for your full body scan in the Nuclear Medicine department. You are no longer radioactive and life can return to normal. This scan is a simple test for the patient, you lie on a table on your back, the scanner moves very slowly over you, it's very close to you. It takes about 1 1/2 to 2 hours.

Your Radiologist will meet with you after the scan is read and go over the results. Mine was clear, and the 2 diagnostic scans I've had in the past few years were clear also. At this time, my Thyroglobulin is high again, it's watched for a slow rising pattern which could indicate the return of cancer. Breaking my femur got in the way of having my diagnostic RAI and body scan, so I'm playing catch-up on that and a few other things.

Gentle Hugs....and a tolerable pain day.

My Total Thyroidectomy for Thyroid Cancer

noreply@blogger.com (Unknown) — Fri, 09 Aug 2024 22:05:00 +0000

After seeing a Specialist about the masses on my thyroid that had been found on Ultrasound, he ordered a Fine Needle Aspiration or FNA. This is a biopsy.

I laid on a table and the doctor asked me to extend my neck. He then injected a local anesthetic. Under flouroscopy, he guided the needle into a nodule and aspirated cells from that nodule. He repeated it again into another nodule. It didn't hurt per se, it was uncomfortable. This took about 60 minutes total. He did not aspirate from all 4 masses.

The Endocrinologist set an appointment for the results to be discussed. He told me I had Hurthle Cells show in the biopsy, a rare type of thyroid cancer cells. Next, we talked about my choices. I could have a lobectomy, removal of one thyroid lobe. The other choice was a total thyroidectomy where the entire thyroid is removed. With the partial removal, there was a chance I'd have to have the remaining lobe removed in the future, if another nodule was to grow there. Because I had masses on both sides, it was recommended to have the total thyroidectomy. With that, I'd have to take thyroid replacement hormone for the rest of my life. I'd do anything to avoid another surgery and told him let's do the total thyroidectomy. The surgery was scheduled quickly.

I would stay one night in the hospital if everything went well. The usual pre-surgery checklist was followed and the morning came for surgery. Spent some time in pre-op and went into the surgical suite, then I was out. Apparently it went well and I woke up in my room. The next day was my 55th birthday which matters to the thyroid cancer situation as the cutoff is 55 and above, and 55 and below for staging and survival rates.

My surgeon came in and told me that I had 4 masses on my thyroid and that one was very large, over 4cm, like walnut size and he had some difficulty getting it out. He said that the pathology results would be sent to my Endocrinologist. During surgery, the parathyroid glands were taken out and then reimplanted after the thyroid was removed. They are small glands, 4 of them, that lie within the thyroid gland. Recovery took a couple weeks, the incision was healing well. It is interesting to note that my thyroidectomy was the last one my surgeon would perform. My endocrinologist said he stopped doing them due to the difficulty-- as all thyroid tissue possible needs to be removed, and the length of the surgery. A thyroid cancer patients favorable outcome through the years rests on the initial surgeon skillfully removing all thyroid tissue.

I went to see the Endocrinologist and he told me the pathology results showed that I had Follicular Thyroid Cancer, Stage 2, with invasion of the vascular system. It was well-differentiated which is what you want to see. These types are easier to treat. Follicular thyroid cancer makes up 10-15% of all thyroid cancers. There are roughly 4 types. Papillary is the most common and makes up 85% of thyroid cancers.

Next was the discussion about treatment with Radioactive Iodine (RAI) or I-131. This is to kill any thyroid tissue/cancerous tissue remaining. This is both chemotherapy and radiation together. A full body scan is then done which shows any metastisis to distant sites.

Next--Radioactive Iodine treatment and full body scan.

Gentle Hugs....and a tolerable pain day.

Asking For Help

noreply@blogger.com (Unknown) — Sun, 12 May 2024 22:11:00 +0000

Asking for help doesn't always mean you get what you think is right for you, but it sets the wheels in motion.

In 2013 my body and mind had reached a breaking point. My chronic spine pain was not responding to the medications my doctor had me on. I had moved, and was finally seeing a pain management physician, but the medications were not effective. Combined with the other symptoms of anxiety, severe insomnia, rapid heart rate, brain fog and the fact I was in an abusive relationship, it was all too much to bear.

I needed help and got a referral to a place they assured me would help with the mental issues, and said they would also help with the insomnia and my pain. That was a tall order but I was desperate.

I entered the facility with mixed emotions. From the start I was unsure if I belonged there, many patients were there for substance abuse issues. A couple patients were there for mental by disorders so I decided to stay and get some help. Surely they would help me with my severe insomnia.

I didn't see a doctor right away and was given Vistaril for sleep. Vistaril is an antihistamine and anti-emetic with properties that can make you drowsy. I didn't need drowsy, I needed a hammer to knock me out! I told them the drug name that I took at home and asked if they could increase it. They were no help and I laid in bed at night just like at home, staring at the ceiling. I thought, heck I could do this at home in my comfy bed!

Meanwhile, my anxiety was through the roof, my heart felt like it was going to beat out of my chest. I had major brain fog and sat through the group sessions not caring or really understanding what anyone was saying.

One day, I felt like I was going to blow up with all the symptoms reaching a breaking point. I told the nurse I needed to go to the hospital, and when I got there, I saw an ER doctor that ordered a thyroid Ultrasound. My confused mind didn't understand why, but I went along with it.

Three days later she called me at home. "Shauna, you have 4 masses on your thyroid, one quite large, I cannot rule out carcinoma at this time; you need to get to a specialist right away!" She was my Angel in a lab coat.

Next: Thyroid biopsy and Total Thyroidectomy...

Gentle Hugs....and a tolerable pain day.

Searching For An Answer...is it Thyroid Cancer?

noreply@blogger.com (Unknown) — Sat, 11 May 2024 09:27:00 +0000

Getting my diagnosis of Thyroid Cancer took unneeded time, and valuable years of my life. Looking back, there was evidence from a CT scan done in 2011 that certainly should have been utilized. I was not diagnosed with Thyroid Cancer until 2014.

That scan is referenced here, in a post titled: A Jawdropping CT Scan. This was a thoracic spine study which incidentally showed a mass on my thyroid-- which was ignored by the ordering physician; ignored like many other issues he should have acted on. I didn't know about the mass until I got a copy of the scan much later. That doctor made some big mistakes in my care. That scan should have had him immediately send me to two specialists: an Endocrinologist and a Pain Management doctor, as he was prescribing my medication, which was ineffective. I was pleading with him to refer me to a pain doctor, as he knew I would not have anymore spine surgeries, and I was also very interested in the intrathecal pain pump. That all starts with seeing a pain management physician. His office was not known for timely referrals, or in my case, a referral at all.

Those 3-4 years between a mass first seen on my thyroid, and getting a cancer diagnosis, were very tough times. I had severe insomnia, unable to sleep for three months, after staring at the ceiling all night, sleeping on the couch because my boyfriend snored something horrible (and was abusive) I sometimes caught a quick nap as it neared early morning, then being awoken by his alarm, it was impossible to go back to sleep. I was absolutely dragging through each day.

I had a rapid heart rate which presented itself on my shirt-- moving with each beat, it was so strong. That heart rate contributed to feeling extremely anxious during those 3 months of no sleep. That kind of insomnia is akin to what is done during prisoner torture--keeping a person from sleeping for weeks, months at a time. It makes you feel like you are going crazy; it causes psychosis.

Brain fog followed right along. Mix all of those symptoms up and I was a candidate for the psychiatric department like so many misdiagnosed thyroid patients. Untreated thyroid disorders can mimic mental health symptoms.

I showed as 'euthyroid' in thyroid blood work, which is normal levels. So anytime I was tested for thyroid disease, it was all normal, yet I had cancer growing in 2 of the 4 masses on my thyroid. I came to learn that doctors can not rely on blood tests alone for finding disease in the thyroid. I was a perfect example of that.

I fought for my own health. I took the initiative to press on about how I felt, my symptoms, the need to find out what was wrong with me. Then my angel showed up. God made sure I wasn't alone in my fight, in finding out what was happening to me.

Next: Asking for help....An Angel showed up..

Gentle Hugs....and a tolerable pain day

My Intrathecal Pain Pump

noreply@blogger.com (Unknown) — Mon, 26 Feb 2024 19:22:00 +0000

This gave me my life back....

Also known as Intrathecal Drug Delivery Systems (IDDS) or Morphine Pumps, these implanted therapies provide round the clock, continuous infusion of medication directly to the intrathecal space, which surrounds the brain and spinal cord. The medication goes straight to opiate receptors in the brain and dorsal horn of the spinal cord. Oral, or systemic medications, have to be metabolized by the liver, go through the digestive process, and peaks and valleys of pain occur. There is no constant pain control for the patient. Oral medication is simply not effective for some patients. My pump has been the best thing I've had done in the pain management world. And I have tried many modalities to alleviate my constant pain. Series of many epidurals, facet injections, botox injection, nerve ablation, spinal cord stimulator trial, two surgeries, one with a fusion. I tried out anything that was safe and agreed upon with my physician. I tried it all, and it all failed. Then along came the IDDS, and after 30 years of severe pain, it has given me my life back. Here is my experience with the intrathecal pump for chronic pain.

THE TRIAL

In 2015 I had the trial for the implanted intrathecal pain pump. This was done in the surgery suite of my pain doctor's practice. He first injected a local anesthetic and under fluoroscopy, gave me a dose of morphine into the intrathecal space, which is the area that surrounds the brain and spinal cord. I had to lay down afterwards for an hour to avoid a headache and to let the mediation absorb into the area. That evening, and for the next 24 hours, it was the first time in 3 decades that I had NO pain in my thoracic spine, the area of most of my spinal pathologies and two past open back surgeries. I was so excited knowing that we had found the perfect modality to alleviate my severe chronic pain. At my follow up appointment, he submitted into my insurance for a permanent pump.

PREPARING FOR THE SURGERY

Knowing what to do before surgery is very important, as it will have an effect on the lifetime of the pump. If proper instructions are followed post surgery, the likelihood of a successful implant can be met. There are very strict instructions--no bending, twisting, reaching, lifting more than 5 pounds, and these are followed for 3 months. This will help the catheter to obtain and keep good placement, and for the pocket that holds the pump to allow scar tissue to form, keeping a good hold on the pump. I put everything onto the counter in the kitchen so I would not bend or reach for dishes. I got a grabber to pick anything off the floor. I bought smaller items than usual in the refrigerator to avoid lifting more than 5 pounds. Then the night before surgery, he prescribed Hibiclens to be used in the shower, using half the bottle, and the morning of the surgery, I used the remainder. This is to help with a clean to sterile area of surgery. Of course nothing to eat or drink 12 hours before surgery, only taking essential medications with a small sip of water the morning of surgery.

THE PUMP SURGERY

My doctor came into the pre-op area and we discussed where the pump would be placed, he asked which side I usually slept on, planning placement for the opposite side. Pumps are usually placed on one side of the lower abdomen, although it can also be placed above the buttock. I asked him to place the catheter as high up the thoracic spine as possible, as my pain is thoracic in nature. Then it was time for surgery. He made a pocket in my lower right abdomen to hold the pump. He then tunneled the catheter attached to the pump, from the front abdomen around the side, to the back of the spine. Making an incision into the intrathecal space, the catheter was then advanced up the spine, to the level in the thoracic spine that would give the most pain relief. He closed the pocket holding the pump with staples, and used surgical glue to close the inch-long incision in the back. I had the expected post-surgical pain while in recovery, and felt pretty darn good when I left the hospital. He originally put Prialt in the pump, a non-narcotic, sea snail venom that is one of two medications approved for use in the pump. The other approved medication is Morphine. I went home and was tired of course, and just went to bed and slept the rest of the day.

POST-SURGICAL PUMP RECOVERY

The next morning I sat gingerly on the side of the bed and felt the oddest sensation having a foreign object in my abdomen. When sitting or laying down, the pump hit my ribs and was very uncomfortable. I could not sleep on the side the pump was on. My abdomen was very swollen, as was to be expected, but I was surprised at just how much swelling there was. I could not take a shower for 5 days. The pocket incision was closed with staples, and over the incision was a yellow material that was the exact size of the incision, with a larger dressing over that. I changed the larger dressing at prescribed intervals. The incision over the one inch area he put the catheter was closed with surgical glue and would come off on it's own. I observed all the restrictions, and was very careful with any movement as instructed.

About a week after surgery, the abdominal swelling had decreased. I went back at about 12 days to his office and the staples were removed. Although still getting used to the feeling of the pump in my abdomen, the pain relief was amazing! I was able to drive short distances with a towel folded over the pump pocket area at about 3 weeks post-op. One month passed and the pain was managed well, with times that it returned and I had oral medications for that. If there is a 50% reduction in pain levels, the pump surgery is considered successful. Over the next month however, month 2, the pain started to return and I scheduled an appointment with my doctor. He told me that Prialt is "either a homerun or it's not", and he switched out the Prialt for Morphine, which I have in my pump to this day. The Morphine has been excellent pain relief for me. He gave me a Patient Therapy Manager, or PTM to give myself preprogrammed bolus doses when needed. This made a huge difference. I got through the next month, and at month 3 post-op, my restrictions were lifted and I could move as desired. Over time, the pump 'sank' into the pocket and it no longer was felt on my ribs. It is amazing to me that I have a one inch thick, three inch across pump in my abdomen and I can sleep on that side without feeling it. That took about 2 years to get to.

The communicator, PTM smartphone and the pump

REFILLING THE PUMP

I go in for refills about every 2 1/2 months. I have a Medtronic SynchroMed II Pump. The size I have is a 20cc reservoir. The old remaining Morphine is pulled out with a syringe, and new medication is pushed in. There is a port on the face of the pump that is accessed to do refills. It doesn't really hurt, as that area is numb and a good provider can stick the needle in without difficulty. The pump is 'interrogated' at each refill, to get the information from the pump. I hold a programmer over the pump which is read and gives the information to the main computer. Changes are made if needed, done by inputting pump amounts and dosages. The refill is done and I hold the programmer over the pump again which reads the new medication amounts and any changes. The PTM I have reads the pump information when I need a bolus dose. It also tells me when the alarm date is, which is anticipated and an appointment for the next refill is made a good week before the alarm date. There are two types of alarms, one for low reservoir, and one for battery life. If managed correctly, I should never hear any alarms, and I have not after 9 years. The battery life is 6-7 years and the pump needs to be replaced.

REPLACING THE PUMP

In 2022 it was seven years I had had the pump, and it was time to replace it. The catheter did not have to be replaced which makes a huge difference in post-op restrictions. I have a newer type of catheter that allowed this. For 2 weeks I was under minimal activity restriction. For 4 weeks the instructions were no exercise, no bending, reaching or lifting above 5 pounds. The original incision site is used to open the pocket to place the new pump, avoiding another scar. The same surgery instructions applied, and Hibiclens is used in a shower the night before, and the morning of the surgery. We did not need to discuss much in pre-op, my doctor came in and we chatted, we didn't need to pick placement this time around, it was already done for us! It was an easy surgery, and post-op pain was greatly reduced this time around. This pump is good for another 7 years, I will be due for another one in 2029.

LIVING WITH A PUMP

I barely notice the pump anymore. It has taken the bulk of my pain away, it has reduced it by 50%. I have the PTM to give myself bolus doses. I hold the communicator over the pump with the PTM smartphone reading the information. When it is at 100%, I can just press the 'deliver bolus' and it is given. It then locks me out until the next prescribed bolus is available. At my last refill, he increased the bolus doses, adding one more per day and increasing the medication amount. The pump medication, in my case Morphine, is 1/300 the amount of oral medication. That is huge and is the beauty of the pump. My doctor says I am on a micro dose. Although all pump medications are micro doses, mine is very low. Looking at my PTM right now, the infusion is: Morphine Sulfate 0.3888 mg/day. That's over 24 hours! For comparison, long-acting oral Morphine is commonly given in dosages of 15mg, 30mg, 60mg and 90mg a day, up to 3 times a day. Immediate release oral Morphine is commonly given in 5mg, 10mg, 15mg, 30mg, up to 4 times a day. You can see there is a huge difference between oral dosages and intrathecal. My bolus doses are: Morphine Sulfate 0.0400 mg, 2 boluses in 8 hours, max 3 boluses per day. I usually use 1-2 a day if needed. There are times of the day I know my pain will increase, and it can be situational, such as after being physically active, carrying things, extended standing.

If you need an MRI, your doctor needs to know. So does the MRI facility. Your pump will stop running during the test, and should start again when it is done. You need to go in to see your doctor after the MRI so they can make sure the pump is running again and everything looks good.

The pump has been an absolute Godsend. It has changed my life. After living with severe chronic pain in my thoracic spine for decades, I can take a breath now. I don't cry because of the pain. Depression has absolutely dissipated, that was caused by living in pain every day, every moment. That pain wears on you, it grinds you down. Looking to the outside world like I was fine, made it even harder. I tried so hard to live life like normal, but I just couldn't do it. It changed me. There were many days I didn't know if I could go on living in the amount of pain I was. Imagine if you have had a surgery or a bad injury, and the pain doesn't go away when it is supposed to. It's there every moment of your life, and you are expected to perform all the daily functions. No one knows you are suffering. Many chronic pain patients express a feeling of isolation. Sometimes we are ridiculed for our use of doctor prescribed pain medications. All we are doing is trying to live a life as pain-managed as possible, we know we will not be pain free. Some pain patients take their own lives. I have such damage to my spine from a severe rollover car accident and subsequent spine surgeries, I have been told for years that I will always have pain. Pain I can deal with. But pain that is incessant and constant despite the many modalities tried for pain relief, was something that was becoming an emergency. But because I had had the pain for so long, it was never treated like an emergency. Just because the word 'chronic' is before the word pain, does not mean it is any different than acute pain. It is simply acute pain that lasts for days, weeks, months, years. Now that I have experienced an acute femur fracture, I can liken my old spine pain to that, but it doesn't get better with surgery. My doctor took one look at the fracture surgery X-ray and said, "You know that this is going to always hurt." Oh well, it is a different kind of pain and one that I am okay with at least at this point.

If you are considering an intrathecal pain pump, I encourage you to investigate into it. Ask your doctor if they think you are a candidate for the pump. If you are prescribed oral pain medications (no matter what class they are) and are not getting good relief, a pump may be your answer. A trial can give you a good idea of how the permanent pump may work for you. If you have any questions, leave a comment and I would be glad to discuss this with you. You are worth a life of managed pain.

Gentle Hugs....and a tolerable pain day.

The 66 Mile Stalker

noreply@blogger.com (Unknown) — Fri, 09 Feb 2024 21:42:00 +0000

Stalking is a pattern of unwanted contact or behavior that leads someone to feel upset, anxious, or scared for his or her safety. (Psychology Today)

Stalking is engaging in a course of conduct directed at a person that serves no legitimate purpose and seriously alarms, annoys, or intimidates that person. (Merriam Webster)

I wasn't sleeping well if at all in that period of my life, and was alerted to a text at 4:30 am while at my son's house. I was spending some time with him, and had left my place (not the first time) after being screamed at, raged at, humiliated, and I felt very frightened. I felt frightened quite often in those days. My instinct was to get away from the very danger that was residing with me. I needed to be in a loving, calm environment, and try to make sense of what was happening to me. The fact I was not home, and was with my son, made someone very jealous and angry. The fact that it was family didn't matter. Narcissists/Abusers do not like the focus of their partner to be anywhere but on them. After all, how can abusers do what they do best if their target isn't there? I grabbed my phone and saw that the text said my son's parking gate remote was on his front porch. I was instantly confused and when I saw who it was from I was even more so. It was from my (then) boyfriend, who should be at our house well over an hour away. I sat up and my heart began to race. In autopilot, I texted him and said, "Are you here?" I received no answer and I went to the front door and looked out the window, seeing no one I opened it up--sure enough I found my son's gate remote to his locked and gated parking area laying there on the welcome mat. It took me a minute to realize that the remote should be in my car, which was parked in that gated area. Why was it sitting out on the front porch? And why had my boyfriend sent a text telling me exactly where it was, moved from inside my car? I had thought a couple hours earlier that I had heard his loud truck out in the parking area but quickly pushed that thought out of my mind, for why on earth would he be here? And at that time of the early morning?

I started feeling afraid, scared. Heart beating faster, I woke up my son and told him of the text and finding his gate remote on the front porch. He and I walked out back to the parking area to my car. As soon as we got close, I could see that something was wrong. I used my key fob and unlocked the doors. When I opened the drivers door, a bunch of stuff fell out. What was going on??

Apparently, my boyfriend had taken a bunch of my belongings from our house, packed them into his truck, taken my other key fob that was in my jewelry box next to the bed, driven 66 miles to my son's house, climbed the fence to get into the parking area (which was tall and had barbed wire on the top) accessed my locked car with my spare key, let himself out of the parking area in my car to wherever his truck was parked, then transferred all the items he'd packed from his truck into my car, drove my car back into the parking area using the gate remote, parked my car, again let himself out of the parking area using the gate remote from my car, walked to my son's front door, laid the remote on the doormat and texted me that the remote was on his welcome mat.

Now if that doesn't make your head spin....

On top of the craziness of all that, the items he had chosen to pack my car with were so random, things I absolutely didn't need--I certainly had not asked for any of them--but things like heavy nursing textbooks, lamps, bathroom rugs, and more boxes of books. On the very top of the pile on my driver's seat was the toilet scrub brush--can you say Passive-Aggressive? Or was this crazy act simply pure aggression?

While my son and I stood in shock staring at all of this, I found myself feeling scared and very nervous. I didn't know if my boyfriend was somewhere watching me. I looked around the best I could to see if I could see him or his truck, and told my son I wanted to go inside, that I was afraid. Of course my son was upset also seeing all this and gave me a big hug, telling me it would be okay, that I was safe there with him. I still felt as if we were being watched.

My boyfriend knew that I was physically unable to move all of these heavy items out of my car and my son had to do it, moving it all into his living room. The front seats, back seats and trunk were all packed full. I had to use my car that morning and needed it to be cleared out. The ridiculous actions he had taken only served to confuse me. I was living in a constant state of confusion, trying to make sense of things such as this, while being abused verbally and psychologically. (The physical abuse was yet to come.) The fact that he had stalked me, taken the time and physical exertion to move my belongings into his car, driven 66 miles up to where I was, climbed the fence, unloaded them all into my car and leave a text for me in the wee hours of the morning was very frightening and disruptive. If he had intended for me to feel this way, he had succeeded. The thing that kept going through my mind was that he had over an hour of driving to cool off, to change his mind. To choose to not go through with such an outlandish thing. But 66 miles did not deter him.

Who does things like this? What is the point, the end game? Was he saying that because I was not at home with him, that I might as well have some heavy nursing textbooks to peruse? Maybe I needed a toilet brush? To this day, I can say that his actions that early morning, were the strangest, oddest events that I have ever experienced. As I looked in the boxes, I saw what he had attempted to do. The books were arranged —he took time and he thought it out. This whole extravaganza took him hours. On the top were any books I had that were psychology related topics. A book about women’s hormones. One about a woman and her fight with bipolar illness. (By Dr. Kay Redfield Jamison—a brilliant woman.) He took a LOT of time picking these out to place on top so they’d be the first thing I saw. My psychology textbooks from nursing school laid on top, next to a book about Chronic Pain and Depression. It was as if he was there, yelling “Look at all these, you are crazy” his one of two favorite words to yell at me during his rages, and “You are bipolar” (the other favorite) yelled very loud for humiliation purposes.

I will write more about living with a narcissist/abuser, there are red flags that if identified, and caught in time, could absolutely help someone in the early stages of a relationship with these people, possibly saving them months, years of suffering. Reliving that early morning by writing here, has awoken a state of anxiety that I experience when I spend more than just a little time on those days. It's not good for me, and I worked through these things years ago. I am safe and I have healed. If I tell someone about this event, they just stare at me, asking, why? They can't wrap their head around it. And I have no answer. A dictionary can define a stalker, but it’s very hard to understand someone who does that. I will never have an answer why he did it—he would not talk about this, as with many other things. He would get angry and defensive, then proceed into either the silent treatment, a rush of verbal rage, a healthy door slam, or another personal fave of his, leave in his loud truck with a nice tire squeal for added impact. As hard as I try, I will never understand the 66 mile stalker.

Gentle Hugs....and a tolerable pain day.

ORIF Surgery/ Open Reduction with Internal Fixation

noreply@blogger.com (Unknown) — Sun, 03 Dec 2023 22:44:00 +0000

Sometimes, you just need a new part....

Because I have the Intrathecal pump for spinal pain, my orthopedic surgeon was concerned about my post-op pain. I am opiate tolerant due to the morphine in the pump, and there is only so much oral opiate pain medication he can give me— to be effective, the dosages would be too high. Ergo the On-Q pump would be used, running a non-opiate local anesthetic directly into the surgical/fracture site for three days. He would place the catheter of the pump towards the end of surgery.

The orthopedic surgeon’s planned second method of post-op pain control for me, was a nerve block. These two methods needed should give an awareness of just how much post-op pain was expected. The nerve block would be done also during surgery towards the end.

When it came time to go in for surgery, everything happened so fast! The surgeon does his cases in my area on one day of the week and he is very busy. Word came down from the OR that I was up next, and I was quickly taken into the pre-op surgery area. Then it calmed down once I was there and I met with the Nurse Anesthetist. Then another sudden flurry of movement and my surgeon came in, checking on me and rustling through the paperwork. He disappeared and my Anesthetist wheeled me into the cold operating suite. I was not looking forward to transferring onto the operating table. I still had the full leg immobilizer on and there was talk about taking it off. The anesthetist’s voice from above my head said no, not to take off the immobilizer yet, that he was going to put me to sleep right where I was, then they could remove the immobilizer and position me for the surgery.

The next thing I remember was waking up with my eyes closed, I couldn’t open them even a tiny bit. And wham the pain hit me. Someone was doing things to my leg and even though I was very, very groggy, I asked if they were doing the nerve block. Someone said yes and I was moaning, each time something was moved in my leg and a wave of intense pain rushed through. A kind female voice said that it was almost over, and she was holding my hand. Nerve pain is unique—it reminded me of having a nerve ablation and having to be awake enough to give feedback for the placement. I remember this happening about 5 times, each time the nerve pain flooded through and I cried out, there was a few seconds of respite before something was moved in my leg and I’d cry out again. Then I was out.

When I woke up in my room, I had an instant sensation of my leg being tightly wrapped, I could immediately feel that my femur was not split in two pieces anymore. I cannot express the absolute difference from 8 days with an acute fracture, to this post-op feeling. I felt whole again. I knew that my surgeon had done a LOT of repair work on and inside my femur. The pain did not overtake the joy I felt—he had fixed my very badly broken leg. The ER doctor had said that femur fractures are 'No Joke', and he wasn’t kidding. Distal femurs are one of the most painful fractures, and I had experienced mine for 8 long days. I was more than happy to have my new leg!

My surgeon had first reduced the fracture, meaning the pieces that were split apart had been realigned and clamped back together. This is the Open Reduction part of the ORIF surgery. He then used 3 very long screws directly into the femur in the distal portion to hold the reduction, followed by a plate which lined up along the bone, with 4 more screws put into the holes in the plate. This was the Internal Fixation portion of the ORIF surgery. It was a long operation with multiple layers, fixing the bone then focusing on the post-op pain.

Back in my room, I looked down to see what state my leg was in. A bandage was tightly wrapped from my ankle to the top of my thigh. At the top, a catheter came out and was attached to the tennis ball shaped On-Q pump, which was held in a black bag. There was also a very thin black wire coming out the top of the bandage and was taped to my leg. This was the nerve block wire. A lot going on!

I slept of course, exhausted from the surgery, and felt so blessed that my surgeon was both knowledgeable and compassionate, doing everything he could to relieve the worst of the post surgical pain, and tailor that to my exact situation. This fracture has a healing time of one YEAR. I had just begun.

I have a new leg, held together by a plate and seven screws. I stayed in the hospital for three more days, for a total of 12 days. When my physical therapist came in the day after surgery to have me ‘walk’ in my room, the sensation was night and day from before surgery to after. It was actually tolerable pain, and I was able to get farther on the first day after surgery, than I had with the acute fracture. It felt so stable! It felt protected. The full leg immobilizer was back on again over the tightly wrapped bandage. Now this I could deal with! Oh, I had pain, no doubt about that, but it was a different type of pain. I could tell that the nerve block was very effective, as was the On-Q pump.

The day after surgery, the discharge nurse came in and we started discussing what was going to happen next. She would be finding and arranging my care at a Skilled Nursing Facility that had a robust physical therapy program. One place in particular sounded amazing and I prayed about going there. As it turned out, she got me into that care center, and three days after surgery I was heading to my new ‘home’ for the next two months.

Then the real hard work began.

Gentle Hugs....and a tolerable pain day.

One Step Changed It All

noreply@blogger.com (Unknown) — Thu, 16 Nov 2023 05:38:00 +0000

One simple step can change your world.

I had just gotten home from an intrathecal pain pump refill. Yes, I got the pump!! I wrote multiple times about that years ago, and it finally happened. I will write about the pump, the insertion surgery, recovery rules, living with a pump and how it is refilled. How it has absolutely changed my life for the better. But this is the time now to write about that one step.

I was outside my apartment, simply walking, on a slight slope that's very sandy. I stepped forward and the next step was suddenly on uneven ground, I slipped on the sand and down I went. I passed out and woke up on the ground, crying. I was not sure exactly what had happened, but it became very apparent that something was horribly wrong with my right leg. Both my knees were bent under me which was weird because I can't bend my right leg under me due to two past knee surgeries. I tried to move that leg, and I felt and heard a grinding unlike anything I've heard before. I could feel bone against bone, I knew there were two bones where there should have only been one.

I just cried and knew that I could not get up. I was very disorientated. Just when I was realizing I would have to call out for help, my neighbor walked out. I called his name and said, "Help me", and he ran over to me. I asked him to pick me up--I don't know why, I just wanted to get off the ground and off my bent knees. He lifted me up under my arms and my legs unfolded. I screamed. I cannot explain the pain in my right leg. He helped me to a place to lean against a couple steps away and I just kept crying, the pain was so bad. I could not bear any weight on my right leg. He went and got another neighbor who called 911 and we waited for the paramedics to come. My other neighbor came over and I asked her to go into my place and grab my purse and phone and lock my door. When the paramedics arrived it was an issue for them to get me into the ambulance safely, with the sand and uneven surface--for their safety and mine. They finally found a way and carried me, oh my--the pain with any movement at all was just horrible, I was screaming, it was the worst pain that I have ever experienced.

The ride to the hospital seemed to take so long even though it is relatively close. When we arrived to the ER, they transferred me to a bed, and while I waited for the X-ray tech, my leg was swelling and bruised, also on my ankle, but above my knee it was very swollen, like another knee above my knee. That's the best way I can describe it. They gave me a bag of ice for the swelling. The tech came over to me with the X-ray machine and the X-ray was taken. The tech said, "You broke it, and you broke it good." I wasn't surprised that a bone was broken, I just needed the doctor to clarify it for me. When the ER doctor came to talk to me, he said that I had fractured my femur. I was shocked--my femur? From a fall like I had taken? Then he informed me that I had fractured my distal femur, which is the 'end' of the thighbone near the knee. It is part of what forms the knee joint, and it is the longest and strongest bone in he body. Most femur breaks are proximal, otherwise known as a broken hip (which is actually a broken proximal femur.) To fracture the distal femur, it is normally done in a car accident, a gunshot wound, or a fall from a height. Being older, breaks like mine are usually seen with Osteoporosis. The ER doctor said that femur fractures are 'no joke', the pain is some of the worst of broken bones, and that he had ordered an aggressive pain management protocol for me. He told me I was going to be admitted, and they started giving me IV Morphine right away. It felt like it barely touched the pain. Any movement of my leg at all was terrible pain. He said that an Orthopedic Surgeon would be in to see me in the morning, that I would most likely need surgery, and would need help around the house, home health nursing, physical therapy, possibly time in a facility. That was a lot to take in.

By the time I got into my room, I was exhausted. It had been hours and I wanted to sleep but the pain kept me awake, and I had so much on my mind. Everything had changed in such a short time. So much to think about. The nurses were so wonderful, kind and caring, telling me that the minute I felt pain, I was to call them. I was taken in for a CT scan and being transferred onto a gurney then onto the CT bed was horrible. Got back to my room and waited for the surgeon to come in. Because they didn't know if I may go in for surgery that day, I had no water or food allowed.

The Orthopedic surgeon came in after reading the CT scan. He said I had an oblique fracture with displacement, meaning the fracture was not linear, it had broken into two separate pieces apart from each other. The fracture was long, from the end of the distal femur to the middle of the thighbone in an oblique line. I had severe swelling that is called a Lipohemarthrosis. This is a mixture of blood, water and fat that has leaked from the bone marrow. A surgeon can not cut into a leg with that present, it needs to go down all the way before safe surgery can proceed. The surgeon told me that I needed a plate and screws, a surgery called ORIF, open reduction with internal fixation. The reduction is to line up and close the broken apart pieces, then the internal fixation is putting in the plate and screws. Later, my physical therapist likened my fracture to splitting a log, the bone is literally split in two. It didn't look like surgery would be done that day, due to the swelling, he left it that a week from then he'd perform the ORIF. He told me I would need to go to a SNF after surgery for inpatient physical therapy, and I would be in the nursing facility for 'quite awhile', that my safety was paramount. Living upstairs just added to the time, needing to be able to navigate the stairs. I would need nursing care and physical therapy once I was able to go home. He said that my fracture takes over one year to heal fully. He was a bit unclear on the time I'd be in the inpatient physical therapy care center, saying my fracture is a 'long road' to healing, that it was months, not weeks.

He ordered a full leg immobilizer, which felt a bit better being tight on my leg from ankle to thigh. It never came off--I wore it for over 4 weeks, wrapped in a plastic bag for showers. No weight bearing. Physical therapy came the next day to get me out of bed, even though I was on bedrest. Now that was painful. Really, really, very painful, log rolling to the side of the bed then very very slowly bringing my legs to the floor, then using a walker to take a few one-leg steps, then repeat to get back in bed. The physical therapist and I made sure I had pain meds before I did all that. It really hurt. A lot. Weird guttural yells would come out when my leg was moved--in any way. Quite a few swear words were screamed, all these were simply automatic. But I did it, I pushed myself very hard and got up and out of bed. I was determined to do anything I could to start on the road to healing. Little did I know, I would not go back home for 2 1/2 months.

I was receiving anti-clot medications, being in bed, on my back, for 23 1/2 hours a day. I ate everything they brought, I knew I needed protein, calcium, Vit D and lots of veggies. I eat a lot of veggies and a salad every night with dinner. I had not been inpatient in the hospital for more then a few days, back in 1977 for a big knee surgery- I was in for a week-things were much different then, after surgery doctors kept the patient in bed; no physical therapy for a few days and insurance didn't boot you out like most surgeries now. I stayed just one night for my cancer surgery/total Thyroidectomy, and the two open spine surgeries, I stayed a few days. For this fracture, I was in the hospital for 12 days. I came to know just about all the nurses on every shift--a couple would come in after 3 days off and say, "Are you still here?" As a nurse, I saw things through a different lens and I will say that the nurses at my hospital were amazing--every single one of them. I was absolutely blessed. There was talk about having me go to the SNF while I was waiting for surgery (insurance of course) and just the thought of all the transferring and movement really scared me. In the end, thank God, I stayed in one place. And I just so happened that night to be brought into a private room! Timing. God was with me from the minute I fell until this moment. He is always with me, and He got me through some very tough days to come.

Next is the surgery. I find this all so fascinating and what the surgeon planned for pain control after surgery was new to me, and I am so grateful I had the surgeon I did. Keep reading for the next leg (haha) of this journey.

Gentle Hugs....and a tolerable pain day.

A Great Loss

noreply@blogger.com (Unknown) — Mon, 25 Sep 2023 00:57:00 +0000

As I return to my blog, I realize the last post I wrote 10 years ago, starts with Dr. Jeffrey Fudin. It is with a heavy heart that I relate that we have lost Dr. Fudin, B.S., Pharm D., FCCP, FASHP, FFSMB, creator and author of Pain Dr.com.

Dr. Jeff and the information in his site, made me feel that I was not alone, and I was on the right path regarding my stance on the use of responsible opiate use for chronic pain management. His superior knowledge on the subject and his ability to convey his deep rooted belief to his blog was unique and drew an audience of pain patients, physicians, pharmacists, nurses, advocates and many more. I was fortunate to interact with him and a guest author on the subject of Walgreens Good Faith Dispensing Policy. He had the ability to make me feel like he really heard me, and truly cared about what I was expressing. His blog is still up and kept current by an impressive team. I highly encourage you to head over to Pain Dr. and look around.

He will be greatly missed. My deepest condolences to his family.

Dr. Jeffrey Fudin

October 1958-May 2022

**Update: It seems that his website is down.**

Gentle Hugs....and a tolerable pain day.

Coming Home

noreply@blogger.com (Unknown) — Sat, 23 Sep 2023 16:00:00 +0000

There's No Place Like Home

I stepped away from my blog for a minute--well, 10 years to be exact.

After 6 years of writing, 128 posts, 761 comments, and a lot of work here, it was time to take a break. Also the timing shows just what was going on in my life that led to the break.

I focused here on chronic pain and all that goes along with it. Living every day with severe spinal pain was exhausting. Looking back, I truly don't know quite how I did it, how I functioned in my daily life. My exhaustion was starting to affect my ability to come here and write, think of subjects, interact with my readers, and keep the blog up.

Also during my absence, 10 years held many significant events that would change my life. Change me. One gave me my life back. One threatened to take my life. And one threatened my very safety and sanity.

I will address each one as I get back to writing. It is time. I am in a good place and I am safe. You will see why I say that when I write about each situation. I am certainly not lacking in subject matter. The last 10 years have held the most interesting yet confusing, elating, scary and happy times of any other decade. Just 4 months ago something very significant happened that again has changed my life.

I am happy to be writing here again, I look forward to sharing the last 10 years. As I did before, I hope that each subject will move the reader, educate, let you know that you are not alone. That was one of the most talked about, positive outcomes of my writing--people wanted to know that someone else was also going through the same situation, that they could read here and relate to what I was saying. On the subject of chronic pain, many readers said they felt alone, isolated when it came to others understanding what they experienced every day. They said they felt judged, when all they were trying to do was to be able to live as normal of a life as was physically possible. When I read another's words of a familiar situation, something I have gone through, I feel validated, heard. I like knowing that someone else has experienced what I have gone through. There is a kinship there. I hope in sharing again here, that readers will understand and learn from my experiences.

The thing I will start with is the most recent. I am 4 months into this experience and it dominates my every waking moment, ergo why I will begin with it.

It's good to be back, and as I signed off on every post for 6 years:

Gentle Hugs....and a tolerable pain day.

Walgreens and Taking Action

noreply@blogger.com (Unknown) — Fri, 18 Oct 2013 04:35:00 +0000

"Don't Call Us, We'll Call You"

Dr. Jeffrey Fudin's blog, PainDr, recently hosted an article written by him and and his recent guest poster Dr. Ernest Dole, who spoke out about Walgreens Good Faith Dispensing Policy in, 'Is Walgreens Opiate Policy Deceptive'?

Dispensed As Written lambastes Walgreens and the conduct that individual pharmacists have exhibited, operating under the deceptive and intrusive GFD policy. After the American Medical Association (AMA) introduced a resolution, at it's last House of Delegates meeting, "AMA response to drug store intrusion into medical practice, resolution 218 (A-13)." Dr. Melvyn Sterling, Orange County delegate, representing the AMA in a public statement had a message for pharmacists: "Don't Call Us, We'll Call You." The AMA resolution is specifically directed at Walgreens Corp.

If you were one of the many legitimate patients who attempted to fill your medications at a Walgreens pharmacy and had a problem of any type, please read this insightful article and leave your experiences on Dr. Fudin's blog or the Drug Topics website, where the article ran on October 15, 2013. It may be easier for you to copy and paste what you wrote if you left a comment on my Walgreens experience. The corporation is taking notice of these complaints across the nation. Someone from a Walgreens Facebook group left a comment on my post asking me to contact them on a general email address or through Facebook. Shortly after I filed a formal complaint with the California State Board of Pharmacy. Leaving a short comment a midst multiple horror stories from patients is not the way a national pharmacy chain should handle business.

A compassionate Pain Management specialist informed me that Walgreens is the top pharmacy that gives them problems filling the patients scripts. This is a large Orthopedic group with multiple offices and established, respected doctors in many specialties. They tell every patient when they leave, to call the doctor's (wonderful) medical assistant directly if they experience any problem filling their medication at any pharmacy. The last time I was in Pain Management, this was never an issue. The pharmacy calls requesting further documentation from the doctor are unnecessary, very time consuming, and may breach the privacy rights of the patient.

How You Can Take Action

Many have written of being denied fills of legitimate pain medications by Walgreens Pharmacy, some refusals--such as mine for the muscle relaxer Carisoprodol--did not include opiate medications. The corporation is losing customers, patients are driving farther, to other pharmacies (albeit inconvenient) that want to be an integral part of our health care. The pharmacy is usually the end-stop for all compliant and very tired patients who are simply trying to complete what the doctor's visit that day began. Along with taking our dollars away, we need to stop and make sure these negative events are documented with the governing board of both pharmacies and the pharmacist.

I filed a complaint with the California State Board of Pharmacy against the pharmacist that denied my prescription, all on the basis of the company's Good Faith Dispensing Policy. I did this online, there is a specific page for this on the Board's site. This takes approximately 20-30 minutes. If you do not have computer access, you may file a complaint by phone.

I was contacted by an investigator from the Board, who is assigned to my case. It has not been long since the online complaint was filed. I was surprised at the quickness of his response. He will investigate (among other things) if the pharmacist acted within his scope of practice. He will investigate if there was harm done to the patient, and if the corporation's GFD was the basis for the action the pharmacist took when he neglected to complete the plan of my treating doctor when he refused to fill the doctor's prescription written for me.

The good pharmacists and other pharmacy employees who are caught in the middle of this corporate debacle, as I noted on Dr. Fudin's blog, are innocent and I feel for them. Not all pharmacists are acting outside the scope of their practice. All pharmacists are, however, aware that they have never been licensed nor trained to perform any prescribing. Prescribing by omission is doing just that.

There are compassionate, conscientious physicians, nurses, dentists, surgeons, etc., etc., and there are those who are not. Compassion does not override professionalism, it lies within it. One can not work with patients, with people that are ill, who are in any state of illness, without having and exhibiting compassion. Illness means the body is not in a state of wellness. The last thing that anyone that is ill needs to deal with is a holdup of their doctor's plan for their treatment, and the stress that stems from being denied their medication.

Please go to your state's Board of Pharmacy site online, and file a complaint. The American Medical Association also wants to hear from you. Those who have been wronged need to stand up and be heard, and more important, take a step towards rectifying the injustices done to innocent patients.

A little compassion can go a long, long way.

Gentle Hugs....and a tolerable pain day.

Treating Cluster Headaches

noreply@blogger.com (Unknown) — Sun, 25 Aug 2013 15:56:00 +0000

Today I am pleased to bring some information about a different type of pain than I usually write about.
Pain is pain, no matter where it occurs, and I have been experiencing very challenging pain from various areas of my body--all at the same time.

I need a professional pain management physician to treat me. I realize the specialty of pain management is one of great insight, with interest in the patient's well-being, of their quality of life, and in keeping their patients educated along with a life of tolerable pain levels.

A guest post concentrating on the treatment of the Cluster headache follows, with some great information. My heart goes out to those whose pain is always in their heads. I know people who suffer with migraines, I used to, and they are absolutely debilitating.

How to Treat Cluster Headaches

Cluster headaches occur in cycles and typically develop on one side of the face behind the eye. These are some of the most painful headaches, which can last for several weeks or even months. Fortunately, there are remission periods when the attacks stop for varying lengths of time.

If you experience frequent cluster headaches, there are some treatment options that can reduce the frequency of your attacks and intensity of your symptoms. These treatments fall into three different categories, and they are abortive medications, preventative medications and surgery.

Abortive Medications

Abortive medications are those treatments that are used during an attack to help relieve existing symptoms. While there are many of these medications, the most effective include sumatriptan, other triptans and oxygen therapy. In addition, you may wish to try intranasal lidocaine, anti-inflammatory medications, dihydroergotamine injections and ergotamine drugs.

Preventative Medications

As their name implies, preventative medications are used to help prevent cluster headaches from developing in the first place. However, it is essential to note that results may vary among patients, and some patients may still experience mild cluster headaches even after taking these medications. The most common drugs in this category are listed below:

Ergotamine tartate
Lithium
Prednisone
Divalproex sodium
Beta blockers
Calcium channel blockers
Cyproheptadine
Amitriptyline
Topiramate or valproic acid

Surgical Treatments

On very rare occasions, doctors may recommend surgery for patients who experience chronic cluster headaches that cannot be relieved through any of the above treatment methods. Surgery may also be an option for people who cannot tolerate various medications or who are experiencing too many side effects from medications.

The goal of surgical procedures is to block the nerve pathways that are responsible for cluster headache pain. However, there is a risk of complications with surgery that can include muscle weakness of the jaw or sensory loss in various areas of the face and head. It is for this reason that surgery is rarely considered.

Preventative Steps You Can Take

There are some things you can do on your own to help prevent cluster headaches. By keeping a headache diary, you can identify what may be triggering your attacks. Once you know what your triggers may be, you simply need to avoid them. There are many things that can trigger cluster headaches, such as smoking, alcohol, various foods, unusual sleeping patterns, overexposure to the sun and poor nutrition.

Occipital Nerve Stimulation

Currently, researchers are studying a new potential treatment for cluster headaches known as occipital nerve stimulation. For this procedure, specially-designed electrodes are implanted in the back of your head. These electrodes are then connected to a tiny pacemaker-like device. When necessary, the electrodes send impulses to encourage the stimulation of the occipital nerve, which may relieve or even block the pain from cluster headaches. While several studies have found the procedure to be effective in small groups of people, it has not yet been established as a viable treatment method.

Although cluster headaches are some of the least common types of headaches, they are also some of the most painful. While there are no exact cures for cluster headaches, there are a number of treatments to help reduce or relieve the symptoms. If you experience cluster headaches, speak with your doctor to find the best treatment option for you.

Julian Kahn works at the Migraine Relief Center. Their treatments help headache sufferers cope with the pain of cluster, sinus, tension and migraine headaches.

Gentle Hugs....and a tolerable pain day.

DEA Settles with Walgreens for a Record $80 Million

noreply@blogger.com (Unknown) — Tue, 09 Jul 2013 22:27:00 +0000

It was not a judgement call when a Walgreens Pharmacist refused to refill a medication two months ago that I had filled (at Walgreens) 30 days prior. And 30 days before that....etc. It was nothing new on my profile of medications.

I wrote Farewell to Walgreens about this experience, and received comments and emails from all over the states, which all mirrored my experience with Walgreens Good Faith Dispensing Policy.

While researching this, I discovered a plethora of information that finally explained why this is happening to so many compliant, legitimate patients.

In 2011, Walgreens stores and distribution centers in Florida ordered more than 2.2 million dosage units of Oxycodone/Oxycontin. That same year, the average pharmacy in the U.S. ordered approximately 73,000 oxycodone dosage units. The DEA investigated, and fined Walgreens $80 million. The largest ever for a violation of the Controlled Substances Act.

I came across Dr. Jeffrey Fudin's blog, PainDr, and was delighted to find a post by a guest author, Dr. Ernest Dole, a Clinical Pharmacist and Professor. Titled, 'Is Walgreens Opiate Policy Deceptive?', Dr. Dole looks into the 'Good Faith Dispensing Policy' or GFD in relation to the State Board of Pharmacy and the oath of the Pharmacist. Are they beginning to 'prescribe by omission?' was a question posed by Dr. Dole, and this caught my eye, as my prescription had been axed by a pharmacist-- standing in the role of a doctor.

I relayed my experience with Walgreens on Dr. Fudin's blog, and was pleased to see him, and Dr. Dole show up with a response.

Dr. Dole's post brought in multiple comments full of the same stories of legitimate, well-established patients, being refused medication fills/refills by Walgreens. What the cameras don't see, are the faces of patients in pain, that rely on certain medications to function. Walk. Stand up. No one sees or wants to really know about the bleak horror of opiate withdrawal. Unplanned and sudden, the cessation hurts the body and the mind. This is not correct patient care. This is an interruption of a physicians plan that may have taken months- even years of work. Trial and error. Doctor and patient together, working with the physical and the pharmaceutical; successful pain management does not happen overnight. Is a corporation now telling me (and in turn, my physician) that we are unable to complete the plan for my chronic pain management?

All medical professionals take an oath. Usually beginning with, .....First, do no harm......

And it's up to the patient once again, to protect and heal themselves. It is in a patients best interest to ask for written evidence of any claim by a pharmacy that they can not fill a legitimate prescription due to a 'DEA rule/law'. This is vague and unprofessional. Whoever says this to you without anything to support this statement, is lying and making a fool out of the patient. As a nurse I would never consider lying to a patient to save face. My own or a company I work for. I realize here that many innocent employees of Walgreens Pharmacy may be caught in the middle of this huge corporate debacle, not realizing themselves what exactly they are supposed to tell patients, or what their revised 'Good Faith Dispensing Policy' even means.

Some of the patient's stories I read were heartbreaking. A woman who was a long-time, faithful Walgreens Pharmacy customer was suddenly refused her regular monthly medication, and she could not find another pharmacy to fill her medications at, the small town she lives in has no other options. One must also consider various disabilities, financial stressors, and other factors that accompany the body in disease or pain. Suddenly, abruptly left without any pain medication, her pain increased to levels that were intolerable, and she began to experience unpleasant (and unnecessary) withdrawal symptoms. She was sent to the ER by her pain management physician. The ER doctor (and her pain physician) in an effort to bring her constant high pain levels down and allow her to become somewhat mobile again; treated and released her with a prescription for a different opiate.

And then she had to fill it.
~~~~~~~~~~~~~~

California Medical Association talks about Walgreens pharmacists refusal to fill.

Do you need help with a pharmacists refusal to fill your legitimate prescription?

In California: If you or your patients have difficulties filling prescriptions for controlled substances at any pharmacy in California, please report problems to CMA's Center for Legal Affairs at legalinfo@cmanet.org or (800) 786-4262. (From the California Medical Association)

In Other States: Contact your State Board of Pharmacy.

Gentle Hugs....

**Thanks to my friend C -an amazing PharmD- for the exchange of ideas.

Adar Scrub Top Review

noreply@blogger.com (Unknown) — Sat, 22 Jun 2013 17:02:00 +0000

Look As Professional As You Are*

Uniformed Scrubs asked me to review a medical scrub top from Adar Uniforms.

I ordered a size medium (quick arrival, via UPS) that came in black. The first thing that I noticed was the quality of the fabric. The feel is one of crispness, like fresh cotton sheets. This Adar scrub top is 65% polyester and 35% cotton. Washing is simple, with the directions stating to machine wash in warm water, and tumble dry low, no bleach. The weave is tight, yet breathable. For a polyester base, it feels more like cotton. This is one of those scrub tops that stays looking new, despite repeated washing.

Scrubs must be durable and easy to take care of. Repeat--easy care. Anyone in the medical profession knows how important that is at the end of a busy day. I will never forget one of my nursing instructors relating to us in class that each day she got home from her shift in the ER, she stripped down in the garage, tossed her scrubs in to the wash and immediately took a shower. That has always stuck in my mind as she was getting across to us the plethora of bacterial transfer that occurs when working in direct patient care, and teaching us that each patient we come into contact with, lab coat or not, may transfer bacteria not only to our skin (ergo the constant hand washing) but also to our uniforms. Unless there is protective wear over nurses scrubs, this seems inevitable.

The fit is roomy, a refreshing change to the trend of tighter scrubs that are so popular. I know nurses who were never interested in the body-conscious designs. These are not overweight people. Everyone has a personal comfort factor, knowing what works best for them and the specific job being performed. We all have an overall preference towards a certain fabric, a favorite fit, and color.

I have a slender build, and the width of this particular style is a bit too large for my frame. I would wear this top however; I have others that are of the looser style, and they are very comfortable. A couple of the tighter scrubs I have feel a bit too tight and restrictive. It’s all about personal comfort in our profession. An uncomfortable nurse makes for an unhappy nurse.

This scrub top style also considers function of the job being done. What nurse is not completely lost without a pen? (Oh the arguments I've seen over lost/stolen pens) Within the top left pocket is a separate stitched pocket for pens, penlights, etc. One of those small but much needed and appreciated features.

For my readers, here is a deal for 15% off from Uniformed Scrubs! Use the coupon code ‘trueblue’. This is good through July 31, 2013.

Visit Uniformed Scrubs: Facebook-https://www.facebook.com/uniformedscrubs
Blog-http://uniformedscrubs.wordpress.com
Google Plus- https://plus.google.com/102649430487593258176/about

Pinterest-http://pinterest.com/uniformedscrubs

Twitter- @UniformedScrubs

Gentle Hugs....

*Adar Uniform's slogan

Missing Mr. Small

noreply@blogger.com (Unknown) — Sun, 16 Jun 2013 23:52:00 +0000

I completely forgot today was Fathers Day.

No longer needing to remind my son to call his dad on this day and his birthday, no longer having my dad around to say things to, this becomes just another day. Mothers Day is a bit different (my mom died 5 years before my dad) because I have my precious and only child, my son, who always makes Mothers Day something special.

Each time there is a special day that many people celebrate, I am reminded over and over just how fortunate those are that have their loved ones here with them. I lived in Taiwan in the 80's, and both my parents (who were divorced) and I stayed as close as when I was in the U.S. We made it happen. No computers, texting, no instant anything. Long-distance (expensive) phone calls from land lines, and snail mail was it. Taiwan is 15 hours ahead of California, calling was challenging and had to be prearranged to work for each side of the world.

I felt like the most fortunate daughter in the world when my dad called and told me that he was coming over to Taipei for business. He worked for Ford Aerospace his entire life as a contract administrator, overseeing billion dollar defense contracts with U.S. allies. (I was the only fourth grader I knew that brought a reel to reel film of a tank shooting ballistic missiles for show and tell).

(Photo credit: Lif...)

I was busy studying Mandarin Chinese and working as a model in Taiwan and Hong Kong when my dad came over, along with some other Ford employees, and took great delight in telling me about going to a local department store. They were all going up the escalator and one of his coworkers said something about 'the pretty American girl in the poster'.

My dad looked over and said, "That's my daughter", and when

he was telling me this, the gleam in his amazing green eyes was bright. That was in 1986. I had my son that year in Taiwan. He sure loved his 'Papa Web'.

In 1995, I was a Hospice nurse by profession and a full-time nursing student when I took care of my father when he was put on Hospice. He had colon cancer (as his mother did) that had metastasized to his liver.

I was given the amazing gift of taking care of both my mother and my father during their last days here. Once, after gently wrapping my dad's swollen, weeping legs, I leaned over and said, "you're the best patient I've ever had", and my dad responded in a soft whisper, "you're the best nurse I've ever had honey".

These words I will treasure forever.

Inscribed on the granite stone with a bodysurfer on a wave, remembering my champion athlete dad, my younger brothers and I chose: Our Friend, Our Father.

Miss you Dad.

Gentle Hugs....(and give your father some on this day.... if it is possible)

Farewell To Walgreens Pharmacy

noreply@blogger.com (Unknown) — Wed, 01 May 2013 02:23:00 +0000

A Judgment Call

Walgreens Pharmacy has served me for years, been a partner in my medical care, and been a friend at times when I felt as if the entire system was against me simply because I live with pain every day. (I have also been a long time customer of the entire store) This connection has been built over many years, and as with any part of the management of my pain or other medical issue, is very important. I knew the various staff, I was comfortable. It is sad to lose that.

I am not a 'pharmacy-hopper' or a 'doctor-shopper'. I create long-lasting partnerships in my pain management, including the pharmacy at which I choose to fill prescriptions. After decades of spine and knee surgeries, various procedures, trials and novel treatments, all performed by respected surgeons (Neuro and Ortho) Pain Management physicians and the well-known clinics they practice in; I am a credible and compliant patient with a medical history starting with severe trauma going back to my teens.

One thing that does change over the years is employment, health status, etc., and I have been a customer with various insurances, and also a cash pay customer. One year I paid about $12,000 cash for prescriptions, and I did not spread that love around to other pharmacies, that was all for Walgreens. Ouch.

So why am I leaving Walgreens pharmacy?

Let's start with the phone call.

I was returning a call from the Walgreens pharmacist who was refilling some medications I had submitted via the convenient text & email refill alerts they offer. He had said on the message that there was a "problem with one of the medications" and needed to talk to me. I thought I may know what he was referring to with one of the refills, and was shocked to find out what the 'problem' really was.

Asking what he wanted to talk to me about, the pharmacist said something about a new Walgreens policy regarding pain medications and that he couldn't refill the Soma prescription.

Soma, or Carisoprodol, is a muscle relaxer. Granted, it definitely helps with the deep pain and the movement restriction of severe muscle spasms (ergo why it has been prescribed to me for years) but I beg to differ on his wording. I asked him if he could repeat what he had said.

"We at Walgreens in an effort to protect ourselves and our customers, have a policy regarding certain medications and in all good faith, I cannot dispense this medication at this, or any other Walgreens." I was a bit taken aback and asked him to please repeat himself, and I grabbed a pen & paper. He stated this again, and was definitely reading this statement off a paper. I asked him if this meant that no Walgreens now would fill Soma, and the pharmacist read the same thing to me. He chose to do this instead of talking to me like a person. He was completely ignoring my pertinent, non-argumentative questions. This was very aggravating and I felt it necessary to be 100% clear on what the pharmacist was attempting to get across to me.

I said that I need him to clarify this. He began a another script-reading and I stopped him. I told him I am a nurse, I am not arguing with him, I just needed to understand exactly what he was telling me. Had Walgreens implemented a new rule that certain medications were not to be filled? That doesn't make much monetary sense. Was there some problem with my profile on their system?

Or was this a judgment call?

He refused to speak to me on a human level, and began to re-read the same thing. At this point, I realized there was no getting through to this Pharmacist on the phone. I asked him for his name, and he gave me his first name, which I already had from his voice mail. I asked for his full name, and he hesitated, saying, "I don't usually give my last name", and proceeded to tell me. I asked him to spell it, and he did. I thanked him and hung up. I was never angry or rude, I was calm and respectful.

Speechless, I began writing down everything that was said. I looked his name up on the licensing board, and he looked to be related directly to Walgreens. My friend then called the store and asked for the name of the store manager, who was not in at the time. The assistant manager was eager to help, and gave the name of the Pharmacy manager when asked. The Pharmacy manager is one and the same as the script-reading Pharmacist. Helpful assistant manager asked if he could do anything else, and at the time, that was all that was needed.

Recently, Carisoprodol was introduced into the DEA Schedule as a Schedule IV. After January 11, 2012, Carisoprodol prescriptions are limited to 6 fills per prescription. (Initial plus 5 refills) I was aware of this change and my doctor's office also, letting me know last year that the doctor would need to write a new prescription to comply with the refill limits due to this change. (The Walgreens I've gone to for years also alerted me to this) Nothing else changed in the filling or refilling of this medication that affected me in any adverse way.

Until now.

Unable to find anything else that would clue me into why this one Pharmacist refused to refill this medication, I decided to go in person, and meet face to face. We had spoken on the phone late, and I went in to his pharmacy the next day. Unfortunately, he was not in, and would return after the weekend. The Pharmacist there was not contracted with Walgreens, and was one of the nicest people I have met lately. Smiling, he answered what he could of my many questions, letting me know that he could not fill the Soma because of what the other Pharmacist had done, and he was unable to override the manager. I expressed my frustration with the pharmacy manager including his lack of communication skills and his inability to just talk to me and explain the situation. It was recommended that the prescription be transferred across the street to another pharmacy, I agreed, and that was that. The Soma was filled with no problem. Yet I was not finished with this. Too many unknowns. I dislike unknowns in my own medical care.

A few days later, it was time to fill my monthly pain medication. I have filled this same med at Walgreens Pharmacy for years, just as I have with my Soma. I decided to take the security prescription to the same Pharmacist that had denied my Soma prescription. I felt this would most likely not be a simple fill like usual, as this med is a Schedule II. I was not looking for a challenge, I was hoping to simply meet the Pharmacist and let him see me, hear me, and understand that I am a stable and compliant patient, not a drug-seeker, or anything close to that. If that was his reasoning for denying to refill the Soma, he made that call before he ever left me a voicemail that something was wrong with one of my prescriptions. I could have easily filled this medication at the Walgreens by my physician's office where I have been a customer for years.

Again I went in, and again, the Pharmacy manager was not there, and again, the really nice Pharmacist that doesn't work for Walgreens was. I had to laugh when handing him the prescription for my pain medication saying, "I imagine this will not go over very well considering what happened with my Soma." He had more information this visit about the new rules that required the pharmacy to contact my physician, who then needed to write very detailed notes about my pain, if 'weaker' meds had been tried out, etc., and that this documentation would take a few days, leaving me without medication during this time. I still wanted to speak to the manager. My back was in severe pain and I was unable and unwilling to make a third trip back. I realized then that I was not meant to meet the Pharmacist that had denied me a medication that allows my body some freedom of movement, some sort of help for the severe muscle spasms I have all day long. I realized filling any type of medication related to pain was going to be a problem here. I also realized that this Walgreens Pharmacy was not one that I wanted to be a customer of. (Excluding the non-contracted Pharmacist from all of this-- he was so helpful, with excellent customer service skills and would be a perfect Pharmacy manager).

It didn't take long for me to decide that because of this one Pharmacist's judgment call, who has never met me, who only has a computer screen to 'know' me through, who never said, "why don't you come in tomorrow and I can explain this to you in person"; because of that I am now done with Walgreens Pharmacy altogether.

I recently moved just a few miles further south, and the Walgreens I speak of (with the Pharmacist and his interesting customer service style) would have gotten all of my business, both in the Pharmacy, and in the store. It is convenient in location, it is the same familiar layout, all the little things that go with a place frequently shopped. I did my best to try and establish a new and hopeful long-term relationship with the Pharmacist. No attempt was made to contact me after I had gone in, and I made every effort to speak to him in person.

After my experiences in both nursing and as a patient, I understand there are some people that simply won't budge, who refuse to open up, and are all too quick to judge. Decades of Pain Management have taught me to not waste time in any part of the treatment of my daily pain. Let's all remember: I live with severe spinal pain. I am the patient here. I am not the nurse, the manager, or the lawyer who must plead their case.

When Walgreens Corporate receives my letter including my blogs address so they can read this, will they care? Take note? Respond? Or am I just a person that really doesn't matter to them, even if I am a long-time loyal customer? However it all shakes out, it took only one, one employee, one Pharmacist, one Pharmacy Manager; to quickly bring down what many other Walgreens Pharmacy employees have worked hard to build with me. Tsk-tsk, Mr. B., you should be ashamed.

Oh, and when I filled my meds across the street, it definitely was personal.

Gentle Hugs....

Costotransversectomy Video

noreply@blogger.com (Unknown) — Thu, 21 Mar 2013 18:59:00 +0000

The second Thoracic spine surgery I had was in 2001, called a Costotransversectomy, with discectomy and fusion. At T-9/10, I had an anterolateral disc protrusion, causing severe upper back pain. A highly respected and recommended spine surgeon in Arizona was doing a newer (at the time) anterior approach through endoscopy for cervical and thoracic spines. I was excited at the thought of a few band-aid scars and the easier recovery from a spine surgery without the large paraspinal muscles being cut!

After reviewing my studies, he suggested that the surgeons go with a more traditional approach, and do open back surgery. My Neurosurgeon chose Costotransversectomy, removing a piece of the rib (costectomy) the herniated disc material (corpectomy) and finishing with the hopeful added stability with a fusion of the T9/10 vertebrae.

Costovertebral articulations. Anterior view. (Photo credit: Wikipedia)

Costotransversectomy was first performed in 1894, by Dr. Menard. In this surgery, the spine is accessed through an open back incision, the proximal rib that attaches to the thoracic vertebrae creating the Costovertebral joints, is cut so as to allow a clear view and room to work on disc, tumor, spur, etc. The simple fact that the ribs are 'in the way' for many thoracic procedures, lends to the use of this approach, and also used for surgery on anterior or lateral herniations, osteophytes, etc. The transverse process of the vertebrae is then cut, leaving a nice view and area to work. This surgery can only be done in the thoracic spine.

Costotransversectomy is a combination word, like most medical terminology. Costo: ribs. Transverse: the transverse process of the vertebrae. Ectomy: the act of cutting out. ('ectomy' is usually preceded by the name of what is to be cut out, i.e., Tonsillectomy- here it is the rib and transverse process).

I found a video of a Costo, and may I note here that I have nothing to do with the soundtrack. Thank the rockin' surgeons at University of Southern California Neurosurgery !!

In this operation, the patient is having work done at the same level as my surgery: T9 to T11. There is also work done on this patient above at T7. It is the approach via Costotransversectomy that is exactly like mine, showing the cutting and resection of the rib and transverse process to visualize the needed area, and it is always interesting for me to see what my spine has had done to it! Also in this video the surgeons insert hardware, and I did not have any put in. Although twelve years later I feel as if the hardware shown in this surgery may give some feeling of stability to my spine.

Note the cut paraspinal muscles and the retractors necessary. Minimally invasive surgery now completely eliminates the need for this, lessening recovery time, and even post-surgical pain.

Enjoy!! Those of you that can watch surgeries that is. ;)

Gentle Hugs....

Over The Counter Medications in Chronic Pain

noreply@blogger.com (Unknown) — Fri, 18 Jan 2013 22:27:00 +0000

Many patients that suffer from chronic pain use a myriad of different medications, try various modalities, and will try almost anything in an attempt to obtain some sort of respite from the unrelenting assault to the body and mind.

Recently having ended nearly a decade of pain management physician-prescribed Morphine for the chronic pain in my spine, I find that the use of OTC (Over the Counter) medications are finding a definite place in my changing arsenal of treatments.

When opiates are prescribed and used as a part of your Chronic Pain Management program, it is common to see non-opiates either blended with the opiate, or used as an adjunct medication.

The most common OTC med found in opiates is Acetaminophen or APAP. (Brand name Tylenol) Most people have had some experience with Vicodin, being the most widely prescribed medication in the U.S. Vicodin (brand name) or Hydrocodone (generic) is mixed with APAP, and shown as the bottom number in all forms of the drug. Example= 5/500 means that there is 5 milligrams of Hydrocodone, and 500 milligrams of APAP. These are seen in the brands Loracet, Loratab and Norco.

There are dosage limits with any medication, and in the use of Acetaminophen, it is very important not to exceed 4,000 milligrams. Especially with long-term use, damage to the liver can occur, among other issues. I advocate patient education, and learning about the medications you use, including the dosage limits, is something everyone that is prescribed medication could benefit from. Your doctor loves a well-educated patient!

Coated 200 mg ibuprofen tablets
(Photo credit: Wikipedia)

Also seen mixed into opiates is the OTC med Ibuprofen. Commonly used with Hydrocodone, this medication can be found under the name brand 'Vicoprofen' for example. The maximum dose per day of this OTC medication is 2.4 grams, or 2400 milligrams. 800 mgs. 3 times a day.

Used to augment a prescribed opiate, or alone as an adjunct to a non-opiate pain management program, these easy to obtain and relatively affordable over the counter medications are an excellent way to help manage your pain. Along with many, many others who experience life with the constant companion called PAIN, I understand that my pain is managed, not obliterated. That is reserved for after surgeries now, and living life without a long-term opiate pain medication is awesome--not only in it's clarity, but also in it's depth of my experience of pain.

I believe that when a chronic pain patient comes to a deep understanding that life will most likely be pain management vs. (total) pain relief, life will feel less on edge. If we lower expectations, and move towards acceptance of the situation, what we are dealing with this day, this pain, this life, well, it may just seem a little more tolerable.

Even a little less pain is a very good thing.

Gentle Hugs....

"It's Not Your Knee, It's Your Spine"

noreply@blogger.com (Unknown) — Mon, 17 Dec 2012 04:33:00 +0000

A Red Herring

Last weeks emergency visit to my Orthopedist was a visit full of questions, discussions, studying information not previously seen, and an ending diagnosis that was not what I hoped to hear, although I will reveal that I knew this was the root cause of this acute and severe nerve pain running down the anterior thigh.

The best part of this: I have a competent doctor, my questions are answered, and I know which direction I am heading. It's always so freeing to know what exactly is the root of my pain. We're not there yet, but I must say that I am quite impressed with this Orthopedic Surgeon.

Another Red Herring in my life with this destroyed spine. (*Red herring: noun, An English-language idiom that commonly refers to a type of logical fallacy in which a clue is intentionally or unintentionally misleading or distracting from the actual issue.)

First time an RH happened was 1996, year of my first Thoracic spinal surgery. Something else was focused on, leading the physicians away from the cause and leaving me still suffering from the pain of the original issue while the Red Herring was taken care of.

16 years later, this one is an interesting combination of an actual injury that could cause this type of pain, making it even more challenging to get to the root of the matter.

I like docs who have recently been in training of sorts, whether it be a resident, etc., or a physician that has his entire career in front of him, excited, driven, actively determined to find what is wrong with his patients. This doctor is one, very clear, and above all, he uses really great descriptive words when explaining something to me. The kind of medical terms that aren't normally used in most physician/patient interactions. I love it. I learn so much, it's like a class mixed in with a visit. I am looking up words after each visit!

As he reviewed the standing Xrays that he ordered, I got out a copy of the most recent CT scan of my Thoracic spine, wanting to make sure that he had as much information as possible. Although we were studying the knee, having that spine report was invaluable to the total patient view, a Holistic view.

Then it was time to manipulate the knee joint. After finding a spot that was extremely tender to palpation (that would later receive a Depomedrol injection) he asked me to lie down, supine with my legs straight out on the exam table. I moved from sitting on the side of the table, and swung my legs around to lie down. Oh. Hold on! Not happening. I could not lower my torso and my leg at the same time. I was stuck in a little 'v' shape, unable to move any more.

Severe, sudden pain shooting from my uppermost thigh down to the knee hit, the reason I was there a week early, not able to deal with it for another 7 days. With my history of living with pain, this indicates an acute issue that demands immediate attention, for I am not one to run to the doc when it hurts. This is that acute pain, nerve pain. Stinging, it slams into your brain. I can't help but think of James Franco in !27 Hours when he cuts the nerve in his arm. It's the worst part of everything that had to be severed. Nerve pain--The kind of pain that screams at you, shouts- and shouts loud, and you know you are not moving. It burns, hits like an electrical jolt. As I struggled just to get into position, I saw the doc watching it all, not helping me, just watching, and a look came over his face. One of AHA! The final question seemed to cap it all off for him, "Do you get numb in your leg below the knee, as in your feet?" I answered "Yes, when I am driving", and that was that.

That's when I knew what I was going to hear, which direction this road will take me. The good doc had a couple more positions he wanted me in that I just couldn't pull off, so the knee exam was cut a bit short. He left to look again at the MRI of my knee, and also went in for a quick chat with his partner, a spine surgeon. He asked me to walk out in the hallway so his partner could observe my strange, bent-over gait. I can't stand up straight, it exacerbates the nerve pain to the inability to walk.

The diagnosis? Suspect Sciatica with acute nerve compression, most likely in the upper Lumbar spine. Next stop is an L-spine MRI. Last one I had was '02, it is basically a read of my Thoracic spine study, herniations, bulky osteophyte complexes, blah blah. I am looking forward to seeing the changes over 11 years.

I am putting up my standing Xrays in the next post, which is already written and was ready to go, but that was before Ms. Screaming Nerve decided to speak up, helping us to get to the bottom of this, but really disrupting my writing groove, man. ;)

Gentle Hugs.......

Staying Positive in a Life With Pain

noreply@blogger.com (Unknown) — Sat, 03 Nov 2012 11:43:00 +0000

At times of silence, it is there that I find my peace.

In a daily struggle with pain, feeling beat down is very common, and can affect us all negatively. Taking the time to be still, to assess the way you are actually living your life, will also pay off in the sensation and level of pain experienced. Take a look at your choices of how your life in pain is expressed. And remember, Chronic Pain is along for the ride--each day. These days add up (oh so quickly) and this is your life.

Attitude is about 90% of the ability to enjoy life. If your life has a constant companion called pain, being positive is the only way to make it through.

Interesting, Chronic Pain. As a Hospice nurse, I have seen many who were experiencing pain. These amazing people knew that they were spending their last months here. I know there are people out there who are battling many diseases, such as cancer, brutal even in it's name, and can be likewise in it's pain.

I have always written honestly, and lately I have been contemplating those in worse situations than mine. (This is obvious to all of us who deal with any illness) I have never said here that I am to be pitied or am I asking for sorrow from others. Actually, it is the complete opposite. Yet my heart breaks for others. All the time. This empathy also keeps things in focus.

In staying positive in attitude, I can gather enough strength through my own battle with pain, to write and pass to others how much I care and hope that they, too, can access this attitude and see the beauty that lies in wait. Focusing on anything but the pain, acts as another deterrent, a tool to use when you have lost yourself. Lost yourself IN yourself! Focus outwards.

Negativity only brings with it negative thoughts. Just as we have seen how getting proper medical care for Chronic Pain can leave you feeling down, depressed, as if no one cares. It is so easy, so very simple, to follow that train of thought and down you go, along with the thoughts. Thinking about yourself. I am not being a Pollyanna here, knowing firsthand how chronic pain can affect nearly every aspect of life.

Having been at the bottom of depression, I refused to return. Only I can take charge of how I choose to deal with the situation handed to me. A twisted, mangled spine? Me? But I can walk! I can still enjoy my life! But I 'Look So Good'! It is rare for me to tell anyone that just because they can't see it, I hurt. ALL the time. That is reserved for the people that know me well, and make it comfortable for me to speak openly about what is going on with my spine, how I am doing with the lowered medications, how my pain levels are, and I feel the caring and true interest from them.

Why yak on about how I hurt? No one really wants to hear complaining. I believe in honesty (and wish it was that easy and simple for others) but I choose not to include that part of me quite as openly as I am with most other subjects. I support the fact that hiding the subject of Chronic Pain is not the way to go about life, I am speaking of how I have chosen to deal with the subject in my interactions with most people. It's kind of like, "Don't call me, I'll call you", in that I don't bring it up, but I will be 100% honest if asked.

It is here that I remember how much I am blessed to be here. I am alive. I wasn't ejected out the doors when the van rolled over. I am walking. I am very content in life. Whatever road took me here, part of it was my journey in pain. Many years I have had this companion. Always a partner, always along for the ride.

Nature's beauty, the daily newness of this world, wonderful people that weave into my path, pull my thoughts outward, and I decide that my pain is not going to keep me down. I refused that a long time ago. Brush away the negative thoughts and try to see that you alone, carry the ability deep within you, to choose how you are going to view the world and how you fit into it, pain or not.

I am writing in pain right now. Most of the words you read on my site were written in pain. Yet that does not have to immediately be followed by anger, self-pity, negativity, or giving up. I have dealt with pain for years. Every damn day. Oh, I went through all the negative steps. I went down. Way down.

Never to return again to that way of thinking--with great determination and passion for my own life and well-being, I pulled myself up and out of that world. Be aware of who surrounds you, for negativity is not what you want in life at this juncture. Want to feel happier? Hang with those who make you laugh, or better yet, laugh at your jokes! Realize that those who we love are watching us, our children especially, and as they still learn through this excellent passive learning method, isn't it better for everyone if you took the reins and blazed the path for happier times?

You will feel as if the world opened up. Just for you. The sunsets have always been a special time, and now is no different, watching each one with wonder. Hard to believe there was a time in which I really didn't give a crap one way or the other if the sun was even going to rise.

So. Cal Sunset
Photo credit: Shauna Harrelson

A sunrise to a Chronic Pain patient may feel like just another day of misery. It does not have to be so! Regardless of the etiology of the pain, there is no rule that those in pain need to look, act, or sound like they are hurting. Possibly mean and grouchy; angry at all the wrong people. When letting go of the concept that the invisible pain needs to be outwardly shown, attempting to prove something I suppose (since there is usually no apparent Medical Equipment) everything changes.

I have been told how strong I am, how much passion I have in sharing my life in pain, helping others cope with their lives in pain, and this is rounded off with medical professionals sharing with me that some of the most resilient people they know are those living with Chronic Pain. We must learn how to deal on a daily basis with pain, serious pain, for life. Quite a daunting challenge- no? And on top of this coping, we are better off to do it all in a positive manner. Now that all sounds a bit overwhelming, and this takes time. I had to go through the darkness to come into the light. I had to be angry before I could be happy. I had to feel sorry for myself before I could come to a place of peace.

Finding the peace is the journey. And every journey has it's unexpected moments. Have a good time getting there, for life is what happens while we're busy making other plans. (John Lennon)

Gentle Hugs....

The Next Chapter--More Surgery?

noreply@blogger.com (Unknown) — Wed, 10 Oct 2012 07:44:00 +0000

Nearly 5 months since my decision to decrease opiate pain medications, I am now feeling every single herniation, osteophyte, impinged nerve, spinal cord compression, etc., in my spine. All 12 levels of my Thoracic spine are herniated, with multiple bulky disc/osteophyte complexes, ligament calcification/hypertrophy, nerve impingement, costo/vertebral issues, spinal stenosis, and more. The Thoracic Spine is the root of 95% of my pain.

Stenosis of the Spine | Illustration of Spinal Stenosis | Spine Doctor in Vail, Colorado (Photo credit: neckandback)

I am proud of myself for sticking with my plan, decreasing medications, to a now 75% reduction. I have also been doing this on my own. My physicians are aware, of course, but no 'support' to speak of, except for the consistent encouragement from those who care about me. (Including online support) I am happy I did it, the process (and it certainly is a process) is not fun to experience. Not something many would enjoy. **If you are also decreasing your medications for chronic pain, or considering it, I have only positive feelings about that decision. It is a personal, yet an important medical step, in that what will follow, must be planned or at the least, discussed with your treating physicians. Keep on the road you have started out on. It is brave and courageous for many in pain have been told that without the meds, living will be a challenge. (Living in the sense of any quality of life.) I beg to differ. Quality of life is subjective, just like pain.

Treating the cause is more important to me now than ever going back to straight medication management. There is more out there for you than a life taking pills and not really feeling that good anyway! Personal knowledge of others in chronic pain are many, the stories are so varied, some have either sunk into the 'poor me' category, or/and have gone the pill route big time, with non-compliance in taking too many, to selling them on the side. Hang in there if your choice is to decrease or stop altogether. I received wonderful emails from others in pain who are also either decreasing (and feeling better) or have stopped medication. Another reason why writing here has great benefit in support from others that are experiencing the same thing. Thank you to all who shared your story with me and gave me such encouragement! So that chapter is now over, and I move on to the next.

What is next to be written? What is to come and what process am I to go through next?

The level of damage in my spine is such that my options are to FIX the anatomy, or to COVER the pain from that damage. I have been doing the latter. It obviously was not the long-term answer for me.

For now that I have decreased to this point in my meds, the pain has returned, with a vengeance. This pain and the sensation is totally different than anything I've felt before. This is a 'Mechanical' pain.

What is happening, is now that I have lowered meds to a bare minimum, I feel vertebrae moving, I hear them 'popping' which I believe is a slipping, I am able to really sense what the cause of many things are. My instability feeling-common in spinal stenosis, FBSS and other issues, has gotten worse. (My neck is also popping/grinding).

I fell in January onto my spine, onto concrete, I am sure I broke ribs, and cracked vertebrae, or further injured my spine. My pain doc immediately ordered an Xray to rule out fracture of either. Two weeks later I hurt my knee (which I recently was informed has multiple injuries--totally different than originally told to me) so the direct fall on my back went to the back burner. I must remember this is very serious, and I need to start paying more attention to the root of my pain. What I did to it when I hit the concrete must be addressed.

For the past 9 years, I have felt as if I need a rod down my Thoracic spine, to feel stable again. I began searching online for Thoracic surgery, and I found not only a surgery exactly like mine in 2001 (Costotransversectomy with fusion is not a common surgery) but also discovered Minimally Invasive Spinal Surgery. At the University of San Diego, a team of dedicated spine surgeons strive to improve the disadvantages of open spinal surgery, taking full advantage of all the new equipment that helps the surgeons view the patient from many angles, still ending with simple band-aids over the entry points, even though there may be screws, rods, and other hardware inside.

The cutting of the muscles necessary to obtain the proper views in spine surgery, so as to isolate nerves, spinal cord, etc., results in a long recovery, post-op pain, and continuing pain. The muscles that 'run along' the spine, commonly called the Paraspinal muscles, are actually a group of muscles that do not run in a parallel line at all. I am speaking of the superficial muscles of the back.

In the method being used now, small incisions are made to insert the camera, and others to insert the instruments needed. I would need multiple levels worked on, and in the non-invasive method, this may be something I could recover from without the extreme post-op pain and long recovery and rehabilitation, simply due to muscles being cut.

It says a lot for me to even be talking about another surgery. And this is not 'just' one or two things being fixed. The choices I have had for many years have been few, regarding the available methods to treat my pain. I have said since the Costo in '01 that I would not have another surgery, and I concentrated on proper and thorough pain management. Eleven years later, I am ready to try something else.

Thanks for the support and telling me your own stories.

Gentle Hugs....

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
This song inspires me by the energy it holds, it puts me in a great mood, and I have adored Freddy & Queen since they were played over here in the US. Kind of an ironic tie I have to them, 'Bohemian Rhapsody' was playing on the radio the night of the rollover accident. Because I was blindfolded, my hearing was heightened, and that song is forever engraved in my mind as the soundtrack to that slow-motion night.

*Only Freddie can play the piano just by standing near it. ;)
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

And this one....an acoustic 12 string played beautifully by Brian May and a tenor such as Freddie? Amazing.

Sharing the Sadness

noreply@blogger.com (Unknown) — Thu, 20 Sep 2012 20:27:00 +0000

Writing today was interrupted in reading of the sudden and untimely passing of Jennifer Jaff Esq., who fought for those with a Chronic Illness.

She founded Advocacy For Patients with Chronic Illness, was the executive director, and was a lawyer that worked tirelessly fighting for the civil rights of those who have Chronic Illnesses, and all the while she endured her own chronic illness, Crohn's disease.

Jennifer was a bright spot in the sometimes dark and cruel world that faces individuals with Chronic Illness. Hidden, apparent, or the kind that sits silent- waiting to rear it's ugly head at any time; Chronic Illness is an awesome foe to deal with on a daily basis. She faced discrimination on airplanes, due to her chronic illness, and wrote about these experiences, captivating her readers with her descriptiveness and honesty. She let us feel that we were not alone in this journey.

Thanks friend, I never met you, but you touched my heart.

Have a swift journey.

Gentle Hugs....

The Winds of Change

noreply@blogger.com (Unknown) — Mon, 06 Aug 2012 01:17:00 +0000

In the past few months, I have been experiencing a series of events that have led up to a change in my life of pain.

Virtually unable to explain how this has made me feel, I can say that I am happier, more positive, and much more in control of my life than I have in a long, long time.

Taking back control had to be the key in this equation. I was locked in, a puppet, a reactor, and I am tired of that. Waiting for others to pull my strings, as I sit limp, wanting things to happen, but not in control of any part of the situation.

I assessed myself, and saw what it was that had to be done to continue in a healthy, positive, safe manner in my pain management, and my life in general. The emotional and psychological effects, that were a result from the endless waiting, the not knowing, the uncertainty, the incompetence, and always being at someone else's whim; were grinding me down.

Over the past months, I have been silently and quietly decreasing my dosage of pain medications. With help from my beloved ex-pain doctor, and my wonderful primary care physician, my intake of medication is drastically lower. This is a survival strategy, not a pain management strategy. Although it is a well known practice for pain patients to be detoxed or weaned off when pain keeps increasing despite high doses of medications. Then pain is assessed in a medication-free (or greatly reduced) body.

When I wrote the post about being prepared to get ON opiates, I received one particular email from a pain patient that talked about making the decision to decrease their medications. I found that interesting, probably because I was smack in the middle of all these other factors and events and people that were all a part of my decision. It was just another 'factor' that showed up. And became a new friend!

This is an extremely personal decision, just like starting on medications like so many pain patient choose to do when there is nothing left to do to help the constant pain. This is also something that (similar to starting meds) must be followed closely by a doctor.

When the winds blew in, I was ready for change. This seems to be one of the best and most positive changes I have made recently, for I feel great, and most important, my pain is under control at this time. The way the Universe came together over the past months has intrigued me, swept me up, put me back in the Captain's chair, and even touched my cheek softly as it blew past and out the window.

I am the Captain again.
~~~~~~~~~~~~~~~~~~~

*The subject of decreasing medications safely and keeping track of it all, calls for another post, which I am looking forward to sharing.

Gentle Hugs....

In the Sea of Pain-- Without A Captain

noreply@blogger.com (Unknown) — Mon, 23 Jul 2012 04:34:00 +0000

I am truly alone in my fight with Chronic Pain due to my severely damaged spine.

For the past seven years, I have had a trusted partner to work with in my search for pain relief.

I have written about the importance of having your Pain Management Physician being your true partner in finding solutions to for your pain. At the moment, I am floating in the Sea of Pain, without a Captain. No one to drive the ship, to direct the crew, to give knowledge and ideas.

It is a dangerous place to be alone, this Sea of Pain. And scary too.

(Photo credit: arichards63)

After seven years of being guided by my wonderful Pain Management physician, there have been changes in insurances and medical groups, and because of these reasons, I can not see my trusted pain doctor anymore.

I'm thrown back into looking again. Starting brand new. Kinda rusty at this. 7 years. Bleh.

Those who have begun their search for a PM (Pain Management) doctor, know that just finding one is the first step, but not the easiest step. Proximity must be considered, (insurance coverage should be established before the search begins) then physician availability is next.

Waiting for your first appointment with a PM doctor is expected. The first visit is important, but this will continue to be an important person in managing your life of pain. Your LIFE of pain. **Chronic Pain can be overwhelming to look at, as it has no expiration date, it's a lifetime of management.

When a relationship has been established with a PM doctor, it hurts to lose that. That takes time, years, seasons. Things change, life changes over 7 years. My Dr. and I had an excellent rapport, he was interested, listened, had such insight and understanding, spoke the same language of pain, and most of all: he believed everything I said. This is an important part of the doctor/patient relationship in any diagnosis, but with chronic anything, the patient must access care frequently, and on an ongoing basis.

He knew I was a compliant patient, and never called in early for refills, etc. He was like a psychologist, a psychiatrist, an internist, a spine specialist; and my most trusted partner in the care of my spine. I trusted him, and he trusted me.

(Photo Credit--By Brocken Inaglory)

He saw me on days I didn't think I could handle anymore pain, anymore depression (that comes with the outlook on the rest of life being this painful) and days I sailed in with a smile. He knew that I could be both. He expected both. He knew I didn't have to put on any show, change anything about who I am, I just was me. Walking in with a bounce in my step and a smile, gave him the relief of knowing that our choices, made together, and guided by him, were working.

He is going to be a tough act to follow.

Gentle Hugs....

Broken Backs, Strong Women

noreply@blogger.com (Unknown) — Mon, 25 Jun 2012 08:28:00 +0000

Frida Kahlo. A woman whom I admire for her fierceness and strength, her desperation, broken back, her life in pain, and her ability to put her exact situations and deepest feelings onto canvas that spoke loudly to all that see them.

Frida was in a terrible bus accident when the bus she was riding in was T-boned by a streetcar. She was 16. Her spine was fractured in multiple levels, along with breaks and fractures all over her body. The accident changed her life, and she would never be the same again. She dealt with chronic pain for the rest of her life, and handled it the only way she knew how. The only thing any of us can do, when our lives are changed by a traumatic physical and emotional event like an accident.

'Broken Column'

This is my favorite painting by Frida. When I first laid eyes on this, I felt immediately as if I was understood. She understood. She understood me-- she painted my spine! I have said for years that it feels like my spine is crumbling, maybe a rod or some type of scaffolding could give me more stability. Frida painted her crumbling spine. The pain is expressed; woman, beauty, strength, vastness, endless, braced, holding on, nails of pain hit the heart, head, thoughts, desires, dreams, lost abilities, loss of trust. Our bodies betrayed us. Wrong place, wrong time? Can it really be that simple? One moment. Life changing.

I was in a single vehicle rollover car accident. I was 16. The out of control van carrying many young women swayed from side to side, as the driver laughed and yelled, "There's a cat!" (hard swerve) "There's a dog!" (hard swerve the other way) until she saw too many animals and we were on 2 wheels for a moment before we began to roll. Through a grove of trees, not hitting one. I was blindfolded the entire time, as this was a pickup of all the girls that had just found out they made the squad for Senior year cheerleader, and the idea was for us to end up at a party to celebrate. Obvious to say that our van's cargo, did not make it.

I tumbled in the back of that van, like a shoe in a dryer. Loose, on the floor, with nothing to hold me down, I freely flew while we rolled. Me and another gal were the only ones not put in a seat. We both had neck, back and lower extremity problems with pain immediately. It changed both of our lives.

Everything was put into perspective when the firemen said that if the wheelchair lift had not been on the back of the van, the doors would have flown open, ejecting both of us out the back.

The strength found in women, to go on with life after we know our bodies have been traumatized, and will not be the same from that day, amazes me. We are the nurturers, the mothers, the lovers. Physically, my body (spine) has betrayed me. Is betraying me. It just keeps breaking. Falling apart. It is a broken column.

As my column crumbles, my desire to fight grows. I have faced (and continue to face) many obstacles because of this great, broken column. The physical--surgeries, long recoveries, years of various procedures, failed surgeries and trials, tests that show serious and continuing damage, and the pain; And the mental--exhaustion, depression, frustration, anger, while constantly working on coming to terms with a body that is never going to get better. Oh, and the pain. Also filed under Mental obstacles.

Yet through this, the strength shines. The desire to survive, to go on, to face challenges head-on and not flee, always wins. (Yet how temping it is sometimes to run.) Finding this part of yourself if you also live in pain, should not be hard. I believe that those who face each day in pain, are some of the strongest I know. Pain makes us want to do anything that will stop it. Pain is an awesome foe, it carries such power. It is here that we have no choice than to steadily grow.

Most of us in chronic pain, know that there are slim to no chances that it will ever go away. Armed with this knowledge, we concoct our game plan. How to fight this battle. Every single day. Life can be so overwhelming at times without physical pain, and to study how we keep going despite having pain, I find that living with pain bumps us up a notch. Up to a level of emotional strength that serves to do exactly what we need in our lives. I think it is nothing short of amazing.

Whether it is a broken back/crumbling spine, or a myriad of other pain causing issues, when there is pain along with the problem, you have experienced that level of emotional strength. You know what I am saying here. You live it every day too. Just as I felt touched by Frida's 'Broken Column', by a woman who also lived every day in pain, I hope that I have touched you.

For whether you know it or not, I am your greatest admirer.

Gentle Hugs....

Shauna's Life In Pain

Radioactive Iodine and Whole Body Scan

My Total Thyroidectomy for Thyroid Cancer

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Searching For An Answer...is it Thyroid Cancer?

My Intrathecal Pain Pump

The 66 Mile Stalker

ORIF Surgery/ Open Reduction with Internal Fixation

One Step Changed It All

A Great Loss

Coming Home

Walgreens and Taking Action

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