Note To Self: Stop Playing Doctor and Self Diagnosing

I have no medical training whatsoever past what I have learned from my doctors in their appointments. So why do I waste any time trying to figure out what is wrong with me? Last night I was lying in bed and trying to decide what was causing the pain in my ankle? Was it referred pain from my knee or hip? Or is it a new pain and what could be the source? Is it worthy of going to the doctor any sooner than my scheduled appointment at the end of the month? I really don't want any more doctor appointments but pain is pain.

And am I trying to self diagnose myself so my doctor can just confirm what I thought it was?

I have no idea what is currently wrong with me this time. I know it isn't that serious and I am not dripping blood so I am not rushing to seek medical care. But I wouldn't mind knowing the source of this....

For all I know my doctors are going to say something 'helpful' like "I'm not really sure what the cause of it is, its probably from either your RA or fibromyalgia and there is no real way to tell." I get a lot of that.

What I really just want is a cure for everything and since my doctors have yet to find the magic wand with that magic cure, so I am trying on my own.

Devices

Where does the time go? I was looking at my calendar yesterday a few weeks back and I had so many plans for January. Now I have to shift all those plans to February. Or the rest of the basement and the dining room will never get painted.

The biggest plans for this week are for devices:

First I am getting a CPAP machine today. I am not looking forward to it. I have no idea if I will be able to sleep with something on my face. But if it makes me sleep better I am happy. Sleeping better can help you lose weight and feel rested. I would be happy with either result. I get the machine today and have to pay a total of about $200 over the next 9 months to pay for it which isn't bad. But if it doesn't work out for me I can return it.

The other device is a mini TENS machine for pain relief. Yesterday, I was a sucker and fell for a sales pitch at a Home Show for a Magic Massage Ultra from Enovative Technologies.

Its tiny. It comes with little pads that I can put on my body anywhere it hurts. It seems to have helped a bit already. I got a deal but I do feel like a sucker for falling for a sales pitch. But if it can help me reduce pain in areas, I'm willing to try it.

It even came with 'slippers' that I can use on my feet (but you can't walk in them). Otherwise its about the size of an old iPod Nano so I can stick it in my pocket and walk around the house with it on. Right now its on my shoulder which is a bit sore today.

So I am taking advantage of technology to help me be healthier. I am already living better through chemistry due to the amount of pills I take. So this is just the next step.

Would You Inhale?

We know Bill Clinton did not inhale but Barak Obama did inhale (because that was the whole point). I might have inhaled in the past but would never consider it now. All my past experiences involved smoking and occasional batches of brownies.

One friend told me that she asked her doctor about it and he told her it wasn't appropriate for her. She thinks she could go off all her other medications if she could go to pot. Another blogger recently revealed her problems trying to determine how much marijuana was contained in cookies she purchased.

Medical marijuana has been looming outside of my wheelhouse recently. I have heard it could help my pain levels and other issues but I have never really followed up with it. But its appeal is slowly growing.

I have thought about marijuana and its benefits but the whole idea of smoking at this point had zero appeal. Then I learned you can cook with it, brew it, and bake it. That has more potential. I could see drinking pot tea for its benefits. I could see making some cookies with it or maybe a bowl of soup....

I also found that these are the benefits of medical marijuana:

1. Weed can be used to treat Glaucoma. 
2. It may help reverse the carcinogenic effects of tobacco and improve lung health. 
3. It can help control epileptic seizures. 
4. It also decreases the symptoms of a severe seizure disorder known as Dravet's Syndrome. 
5. A chemical found in marijuana stops cancer cells from spreading in the lab. 
6. It may decrease anxiety. 
7. THC may slow the progression of Alzheimer's disease. 
8. The drug eases the pain of multiple sclerosis.
9. Other types of muscle spasms could be helped too. 
10. It lessens side effects from treating hepatitis C and increases treatment effectiveness. 
11. Marijuana treats inflammatory bowel diseases, including Crohn's disease. 
12. It relieves arthritis discomfort.

 
13. It keeps you skinny and helps your metabolism. 
14. While not really a health benefit, marijuana spurs creativity in the brain. 
15. Pot soothes tremors for people with Parkinson's disease. 
16. Marijuana helps veterans suffering from PTSD. 
17. Marijuana protects the brain after a stroke. 
18. It might protect the brain from concussions and trauma. 
19. It can help eliminate nightmares. 
20. Weed reduces some of the awful pain and nausea from chemo, and stimulates appetite. 
21. Marijuana can help people trying to cut back on drinking.

I particularly like #5, 9, 12, and 13.  I also like the idea of 14 and 19. All the others sound good too but are not appropriate for me. 

Maybe its time for a cup of tea or a batch of brownies....

The Props In My Life

How do I handle my life with its medical disasters? I have all sorts of little props to help me out.

• I have a high chair in my kitchen. I can sit when I cook so I don't get as tired. Its new. My husband bought it for me when we moved.
• I have a folding shopping cart for when I go to farmer's markets or any place where I need to carry anything. That way I can actually go places and do some shopping by myself.

• I have cushions all over the house so I can get comfy when I sit down and can put my feet up.
• I have a power bed so I can raise the head and feet and get comfy when I lie down.
• We moved to a raised ranch so I don't have to deal with stairs. It makes my life so much easier. The bedroom isn't upstairs, its just down the hall.
• I have Butrans pain patches that allow me to function as a human being and not be in pain. These are the only things that allow me to get through my daily life without collapsing or being in so horrible pain. 

Actually the single most important thing that helps me cope are my marvelous, wonderful Butrans pain patches. If you are in chronic pain, try them. Without them I would not be able to function.

The Non-Opioid Abusers

Those of us who live with chronic pain take pain medication, including opioids. There has been quite a bit in the news about the growing opioid epidemic which is killing thousands of Americans. Most of those who die are abusers who overdose. The resulting laws trying to restrict access to opioids causes difficulties for those of us who actually live in chronic pain and need the opioids to function.

Could you imagine needing to go back to your doctor's office to pick up a paper prescription to bring to your pharmacy to refill it? That is what happens now. Yes really. Can you imagine being in total pain and having to drive or ride a bus just to get that little piece of paper?

The new laws designed to restrict access by drug users have the unintentional effect of making it harder on the people who need them to function. For someone in chronic pain, who has to limit their efforts and make deliberate choices on how to spend their time and efforts, any extra trips are avoided at all costs.

So what do we do? We cope. We look for alternate therapies that make life easier for us. I am on opioids but mine come in patch that I apply weekly that gives me a controlled dose of pain medication that is essential for my daily activities. I hope more manufacturers step up and come up with more alternative delivery methods which allow pain relief for those in need but does not allow easy access by abusers.

Physical therapy

This morning I finally will start physical therapy for my knee, nearly four weeks after falling. I have opted to have my PT at the gym instead of through the hospital. There are several reasons for this.

First of all, after my initial appointment, I can do my PT on my own instead of having to juggle three more appointments each week. I just don't have the patience for that. When I have PT, I do my exercises every day. Most physical therapists have told me many patients only do their exercises at their sessions.

Second of all, its free. I won't get three sessions each week for free but I will get a session every week or two, and free advice when I want. Yes I have health insurance but I can save the copays, and save my insurance company their share. This makes it a win-win (I hate that term) situation as far as I am concerned.

Last of all, I have had PT for my knees several times so I am aware of what to expect. I know my biggest problem won't be which exercises to do but which ones I am able to do. Between my back issues and hip bursitis, I physically can't do many of the exercises.

So much fun, more than I deserve.

Palliative care

Palliative care is not hospice care. It can be part of hospice care but in itself is separate. Now there is some research that palliative care should start at the point of an advanced stage cancer diagnosis and not later. The study focused on both the patient and the caregivers. Both of who handled everything better with it. Palliative care is pain and symptom relief - isn't that really important?

Personally I think palliative care should be part of any major medical diagnosis. I have been through too many medical issues not to appreciate the importance of it. I sometimes my consider my pain management doctor one of the most important people in my medical team. See Hollye's diagnosis story here where she talks about this more.

"Palliative care, a team-based approach in which a group of professionals – including doctors, nurses, social workers, psychiatrists, dieticians, and chaplains – focus on relieving the pain, anxiety, and stress that cancer can cause, can help control pain and improve quality of life in many situations."

At my breast cancer diagnosis, a social worker was involved in the initial team and was part of my care all during active treatment and somewhat afterwards. As I grew stronger, I was able to find support elsewhere that was more convenient and didn't require  yet another drive to the (damn) hospital.

"...your plan might include ways to manage pain, fatigue, loss of appetite, nausea, and insomnia. Your team also can provide help and resources for dealing with emotional, practical, and spiritual concerns."

Pain management is essential in well being. If you are in any kind of pain, whether post surgical or other causes, keeping it under control offers the patient an important respite - the ability to rest, eat, and move more easily.

While I might not need more palliative care right now, I will be sure to find it when I do.

Pain management

Last week I went to the pain management doctor - yes I have one of those. I had a plan, a very well thought out plan, for that visit. I knew what I wanted and it worked out. I had a series of trigger point injections which are wonderful for fibromyalgia points. And I am scheduled for a Radio Frequency (RF) treatment on my lumbar spine which won't happen until the beginning of April (darn).

I lost the battle with my insurance company for RF of my right sacroiliac(SI) joint so I am moving on to the next options.The doctor thinks the lumbar RF might also help with my SI pain so we are proceeding with that option next.

This is the doctor who also gives me Tramadol for breakthrough pain. And Butrans pain patches for continual pain relief. (I know this post will get hit by spammers between the title and mentioning those names.) So in addition to signing a release for the trigger point injections, I also had to sign a statement, and check numerous boxes showing that I agreed with each one, on how I agreed not to abuse pain medicine and that I wasn't doctor shopping, hiding, sharing, or stocking up on prescriptions, and several other topics. Apparently this is part of a new law focusing on reducing abuse of pain medicine.

Studies have shown that abuse of pain killers leads to heroin use - which is a much more serious problem. To put it in perspective:

"...accidental prescription drug overdose is now the leading cause of acute preventable death for Americans. Someone dies in this manner every 19 minutes. That is more deaths than from car accidents." 

I had no idea this problem was so prevalent. We have a new governor who successfully ran on a stop pain killer abuse platform.

I am careful with my medications. I don't share them with anyone. I keep them all hidden away in a closet out of sight so that if anyone is in our home, they can't easily see them. I also prefer being on a pain patch than taking regular pain pills. It is a controlled dose that keeps my pain in control. But I also have pills for breakthrough pain - when I have a very bad day.

I do not want to unknowingly contribute to this problem. I have enough pain issues without being part of the problem. I want to focus on managing my pain.

Pain control vs opiate management

I am a huge fan of opiates and other pain relief medications. I never used to be. I am also concerned about addiction issues. And if someone got hold of my personal (legal) stash, I would be seriously concerned. My pain meds include several with 'street value'. I would not want to be someone who unknowingly contributed to the local substance abuse problem.

There is a new invention out there for those of us with chronic pain. These are transdermal pain patches which contain varying doses of an opiate - Butrans patches. They have worked very well for me. I started a few years ago about when they first came out at 5mcg/hour and then eventually went up to 10 mcg/hour. You change the patch every seven days and in the meantime, lots of pain relief.

I know people who it has worked for, but also I know some who couldn't tolerate side effects. Like all medications, it is not for all. The best part for me is my feeble brain doesn't need to remember to take a pill to stay ahead of the majority of my pain.

But I digress. There is a real problem with opiate addiction in the US. As a result, the government has cracked down on their availability and has created databases to confirm patients aren't doctor shopping to get multiple prescriptions. This is why I can only get a month's supply of patches with each prescription. Each monthly prescription costs $105. If I could get the 3 month supply, as in the past, the price would be $105 for three months, not one.

This is an example of the problem has been created by more restrictions to the accessibility of these drugs to prevent abuse by the few. Which creates hurdles for those in pain to get the relief they need.

I'll call this progress but the advocacy groups, the regulators, doctors, and the pharmaceutical manufacturers need to continue to work together to help curb the abusers while allowing those in need to get the treatment they require.

The word for the day is "Ow"

On a scale of 1-10, how is my pain today? Probably about a 4, all over my body. With spots of 6-7 in certain areas.

I don't know why but for the past few days my body has be very achy and sore. I have been living on Tramadol again. I hate this. I prefer not to take pills if I don't have to. I mean I do take a lot of pills but prefer not to take any more than needed. And since everything hurts, I need tramadol to survive without rampant crankiness.

And to start my day I have a dentist appointment. This is where they will go in and pick at my teeth with sharp metal objects. Its a new dentist office but not a new dentist. The dentist moved to a new office so we followed her. Apparently the hygienists are very 'good' at cleaning and whip the patients into shape. I can't wait.

This is where I also talk to the dentist about not getting a crown on my root canal until January when we will have dental insurance. Its been a month and it hasn't been a problem so I want to wait. I'm cheap. Actually I just don't want to pay for a crown right now if I can wait and get one through insurance. I already paid for the damn root canal.

To recover from the dentist, I will go to the gym. To recover from the gym, I will go to the grocery store. But not the grocery store which is on strike right now.

First things first, I will go take a tramadol, and then take a shower, and brush my teeth after breakfast.

Fibromyalgia and pain

These days  my fibromyalgia has been better under control. I can also often tell the difference between fibro pain, RA pain, and I stubbed my toe pain. This is thanks to Lyrica with its weight gain side effect (and ice cream after dinner last night).

However, this is not always the case. Fibro has this lovely habit of, for absolutely no reason whatsoever - or maybe I breathed, all of a sudden I am experiencing bone deep pain in my body.

Yesterday I was at the dentist getting my teeth cleaned and all of a sudden I experienced pain down the right side of my back - probably a solid 9 on that stupid scale. It went from my collar bone down to my waist - an excruciating, teeth grinding pain that lasted about 30 seconds.The hygienist became concerned with my facial expression. She stopped working and asked if there was anything she could do - glass of water, sit up the chair, etc. I thanked her and said no. Her reply was 'its just letting you know its still there?' My reply was yes.

That is what fibromyalgia does, among other things. Sometimes it flares up like that in a body part - usually my back or leg or arm - sometimes at a joint and sometimes not. And there is absolutely nothing anyone can do. Unless someone invents the miracle drug that will relieve a 30 second bout of pain anytime soon.

But it is better than before which is a good thing.

Stupid me

I have excuses. I have chemo brain. I have fibro fog. But sometimes I am just plain stupid. This was one of those times.

We are on vacation (note to all the burglars - we have a house sitter and our neighbors know we are away and we don't have anything valuable anyway). Two weeks before we left I made a big project to make sure we had enough of prescription medications to get us through our trip. I checked all of the bottles, refilled a couple.

The day before we left, I went through and filled up our medicine boxes - daily ones - with enough pills to get us through. I carefully packed my break through pain pills. We then designated a little tote bag for all of our medical needs. The first tote was rejected because it was too small so we moved to a slightly larger one. This is serious business.

Then I packed up some over the counter medicines including some Emergen-Cs - you know the packets of vitamin C. I put those in the little zip pocket because they are flat. I put in Tylenol, Mucinex and all that kind of thing.

The next day I went and put elastic bands on the pill boxes so they would not pop open in transit. Then I put in the extra prescription bottles  and double checked and triple checked. I had everything I needed.

As we went out the door I said to my husband the only thing that would get me to come back home would be if I forgot any medication. I told him that I had it all under control and had triple checked it twice.

We arrived on Sunday after driving 90 minutes (we are on the beach if you must know). Monday is pain patch change day. I am on Butrans pain patches - they last a week and provide a consistent dose of opiate medication to keep my pain all under control.

I went to get a replacement patch. THEY WEREN'T THERE!!! What I thought were replacement pain patches were the Emergen-Cs. Damn, triple damn, [insert all obscenities you know here].

Yesterday I went with plan A - taking my breakthrough pain tablets every four hours. It wasn't enough. At all. I didn't even tell my husband until last night. His first question was when was I going home to get them? I said I hadn't decided.

This morning I decided. I was in so much pain. I got in my car at 10am with the plan on going home and coming back by 2pm so I could enjoy the beach. While driving, I was trying to decide what didn't hurt. The answer was my right shoulder. [But now that is hurting too.]

I had to lie down for a couple hours before I could contemplate driving back. Now that I am back I am finally getting to blogging and have taken pain pills and am lying on an ice pack until I feel better.

I was really stupid.

PS The cat is royally pissed off at me. I left. He is not happy. He doesn't eat when I am not there. He will just have to suck it up until I get home.