Merry Christmas to all

The Christmas tree looks great. Mike and I are having a relaxing Christmas day at home. Just us … and the cats. It’s almost lunchtime and we are still in our PJs.

For breakfast I made caramel-pecan monkey bread. Big YUM! We each grabbed hunks and enjoyed it with a glass of eggnog. A perfect Christmas morning.

Tigger enjoyed the wrapping paper. Punk (the other cat) is nowhere to be seen. He doesn’t like any noises or activities out of the norm so unwrapping presents was scary for him.

I cooked a feast for Thanksgiving so Mike is cooking our Christmas dinner feast. I’ll be sitting in front of the fire watching out the window for the snow we are supposed to get later today/tonight.

Hope you are enjoying your Christmas – wherever you are. You could come and visit us – but please call first so we have time to change out of our jammies into something more appropriate for company.

Are Homemade Gifts Acceptable?

I am unable to work which means I don’t add to our bank account. My husband is wonderfully understanding, but I still don’t like to spend much money. So, this year, outside the immediate family, I decided to make gifts. Pretty much the whole year I spent whatever time my back allowed knitting and crocheting. I also made some homemade edible treats – like buckeyes (chocolate covered peanut butter balls), candied rats’ brains (sugared pecans) and cookies.

Do others enjoy homemade gifts? I don’t truly know. I hope so. I enjoy putting thought into what I make and give. Here’s some of this year’s gifts.

I made several people (including my daughter Katie and my counselor Rebecca) fingerless gloves and scarves (I already got a request to make another set for Katie’s friend Marlo – they are on the needles now).

I made a several bags (I think homemade bags are so much better to carry groceries in than the plastic store bags).I saw a pattern for a table cover and immediately thought of a special friend so I worked my butt off and that one for months. I like the end result (and based on her reply, I think she did too).

I even made some Christmas decorations including placemats and hanging Santas.

All in all, I think I did good. Maybe it would be fun to go to the mall and spend hundreds of dollars on gifts, but this is what I can afford and I really put my heart, my sole, and my back into each and every gift. In addition to being gifts, making these things was a gift to myself. My counselor and I recently talked about my need for projects and a greater purpose in life. Work used to be my project. But now, my main project is learning to live with pain – and that’s not a project I enjoy. Making things – mostly small items because that’s all my back and shoulder can tolerate (even with extra pain medicine) is good for me. I do hope the special people who received something homemade from me like it as much I as liked making it for them.

And now it’s time to rest …

No Birthday Cake for Brady

Last weekend, Mike and I traveled to Nashville, Tennessee for Brady’s first birthday. It was the best weekend in a long time. What made it so fun? Daughter Katie is a tremendous and organized party planner … Katie and Jason’s friends are super sweet … Mike and I always have fun together … opening Christmas presents … beer, wine, tacos, pizza and other good food … and of course, the awesome one-year-old Brady.

Mike had the best line of the weekend. He said, “Brady is about as perfect as a baby can be. I blame Katie for that.” Ahhhhh, very sweet … and I agree.

Since it was Brady’s first birthday, everyone (except Katie) thought he should love the birthday cake and wear it all over his face. Brady wasn't having any of that. Brady has never had sweets (no juice, no cookies, no cake, no candy, etc). He prefers blueberries, avocado, tomatoes, bananas and anything else. We tried shoving cake and frosting into his mouth (at least to get the one picture), but he just spit it out. A kid who doesn't crave sugar … very cool!

I like sugar though and I’m presently making Christmas goodies (one batch per day). I want the rewards without too much pain.

Happy birthday Brady!

The 3 Minute Doctor Appointment

I went to my monthly appointment at the pain clinic on Friday. Statistics show that doctors typically listen for 18 seconds before making a diagnosis, but I have never had a three minute doctor appointment before … and it’s not with a doctor, but a PA.

I’ve been going to this pain clinic for six months now and almost every month I see a different PA. I’m a person who likes to build relationships and have continuity and consistency. I want my doctor to understand me. Not here. The PA started out by asking how I was doing. I said fine. In the past, that would elicit a follow-up set of questions regarding my activity level, what is causing pain and talking about how I was feeling. Not here. The PA said, “Good, so which prescriptions do you need refilled?” Since she didn’t seem interested I didn’t tell her about the new anti-depressant or the weather/pain changes. And, at last month’s appointment, that PA wanted me to try a TENS unit and supposedly ordered one for me. This PA didn’t even mention it. Shouldn’t it be in their notes?

So, in less than three minutes I took my one prescription and left. I just don’t think health care should be like this, but if all the practices are overcrowded and overworked and just trying to meet their quotas, I guess it is the way the game is played nowadays.

I left and met Mike for lunch. He likes me … and that makes life in NC bearable.

Fixing Mistakes Makes a Difference

One of our indulgences is drinking bottled water – the kind in 3 or 5 gallons bottles we put on the water cooler. About three months ago, our supplier, Diamond Springs, put a new driver and our route. Since then, problem after problem with delivery. He never had enough of the 3 gallon bottles by the time he got to my house. He’d take all of the empties and leave less than a full order – and a note saying he would drop of the bottles he shorted us the next day. Sounds ok, right? Trouble is, he never came back the next day. Instead of having 7 bottles for the 2 weeks, I had 5 bottles (and that's after a special delivery of 2 bottles after an earlier complaint) … and we ran out completely over Thanksgiving weekend.

Long story short (phone calls, messages, etc). I got 7 bottles delivered on Monday and then the next problem occurred – since the driver only picked up 5 empties, he charged me a $7 deposit for each of the other two bottles. I had never gotten a credit when the guy picked up the empties before.

Resolution … the general manager I talked to was good. He defused my frustration, said all the right things, listened, gave me an immediate credit, asked for my continued business and told me what he was going to do to make sure this doesn’t happen again. I hung up happy. Later, I realized that all I got was a friendly, understanding voice and a refund on the incorrect charges. I expected to get some extra free stuff, but ended up not even thinking to request it because the general manager was that good.

See people, we know mistakes are made. Just fix them! Listening, taking action, saying the right things and being fair and timely – and you get customer satisfaction and retention and it doesn’t cost you anything.

Now I have to lie down. Bad body pain, dizziness and headache. A strong weather front pushed through today and my body doesn’t like that. Another front with strong storms is due tonight. (Or is this a reaction to day 2 of my new anti-depressant medicine?) I’ll know by tomorrow or Thursday.

Hoarding Christmas Decorations

I started sorting through the Christmas decorations yesterday. What should this year’s theme be? Do we need more lights? Do we need more ornaments? Why is it that we keep collecting more and more Christmas stuff, but never throw/give any of it away?

I spent Friday going through the boxes. I plugged in EVERY set of lights I could find. If they didn’t work, I threw them out – let’s face it, I’m never going to go through to find the one bulb that doesn’t work and replace it. I still have more than enough lights to do the tree in all white or multi-colored (plus all red or all purple – yup, Katie and I did a purple and gold tree one year back when it was trendy).

I have handmade crocheted snowflake ornaments, all colors of balls, gold chains, gold garland, antique plastic icicles and several fancy ornaments. I don’t use most of them, and know that realistically I never will, but still, I never seem able to dispose of anything. This year, I am going to really try to reduce my hoard of Christmas decorations.

It’s been a long weekend. After peeling potatoes and sweet potatoes, chopping onions, baking bread for the dressing, chopping fruit for the waldorf salad and baking dinner rolls – for the feast for just Mike on me on Thanksgiving … and then setting up the tree and putting on the lights on Friday, my back and shoulder are not working today. They probably won’t work for several days. I enjoy doing things, but my body no longer allows me to do all I want to do. Oh well, now I will spend this week recuperating and resting for the Nashville trip and Brady’s first birthday.

A week of doctor appointments done – I’m mostly normal

This week was all about the doctors.

Monday – psychiatrist. I already wrote about that. I don’t think I’m going back.

Wednesday – sleep apnea dentist. Two nights down and I’m liking my mouth piece. Mike says I’m significantly quieter and I know I’m sleeping more. I wake with a couple slightly sore teeth, but that goes away quickly and I’m thinking it’s worth it.

Thursday – orthopedist for follow-up on my shoulder pain. We’re happy that last month’s cortisone shot worked so well, but a little concerned that the pain came back (at a lower level). But, since I’m ok living with this level of pain, we are just going to let it slide for now. The doctor wrote an open order for a shoulder MRI – if the pain increases, that’s the next step. There’s a chance that the rotator cuff has a tear in it. Mike already had that surgery. I’m not going that unless/until I HAVE to.

Friday – 2^nd half of my physical with my primary care. Pap, etc. No big deal. Got a print out of all my test results. Just about everything is normal and good. Being somewhat overweight and taking the medicines I do and not eating as healthy as I should, positive test results always surprise me. THANKS, MOM AND DAD! Mammogram – normal. We also discussed that if I decide to take the anti-depressant, I could get refills and monitoring here and not have to return to the psychiatrist. That’s good by me.

The only (small) negative was the bone density scan showed a slight amount of reduction in density. We aren’t going to do anything about it right now, but I will get another scan in one year (instead of two) and keep checking. Still don’t want to break any more bones!

I’m tired of doctor appointments. Next week, a dental check-up and cleaning, but then, a much needed break from being healthy! Time to think turkey, dressing, pie, etc.

A Night of More Sleep

Yesterday, I picked up my SomnoMed Mandibular Advancement Splint (MAS) … translated, my mouthpiece that is supposed to help me sleep with sleep apnea. Skeptical me – it worked! I actually woke up almost refreshed.

It’s bulky, hard plastic (doesn’t bother me while I’m sleeping) and has a funny plastic taste (the dentist said that would go away soon). No mouth pain; no gasping or CPAP noise; no air in my stomach or air blowing on Mike. So far, so good.

I wore it ALL night. Mike said I didn’t gasp and that I slept a lot quieter. I feel more refreshed. It didn’t stop the need to change positions during the night to combat back pain, BUT it did eliminate the waking up from sleep apnea and CPAP issues. So, on the first night, I reduced my awake time by 2/3. I think that’s a good first night.

Without getting my expectations too high, I really, really, really want this to work in the long run. It may look funny, but sleep is so much more important than vanity.

Tired of Doctors

Yesterday, I went to a psychiatrist. Her end result – she said I was depressed and wrote a prescription for an anti-depressant. Of course she did. What else would she do? She gets paid when people come see her and as long as I go back regularly for medication review, she gets paid. My end result might be different. Since I’m going to see my primary care anyway this week, I will see what she thinks – and ask if she can simply write the prescription (if I decide to take it).

How did the psychiatrist get to the depression diagnosis (other than my somewhat sarcastic take that it has to do with $$)? I don’t think I agree with most of her analysis. She thinks that since we were doing something stupid when I broke my back (non-professionals cutting a big tree without safety glasses/equipment); I am punishing myself with the pain. Really? You think I want to hurt? That I feel I deserve to hurt? I agree with the stupid part but not the punishment part. She had other thesis, but who cares?

She did hit one on the head – suck it up. She thinks that I’m a person who sucks it up and deals with it rather than admit the pain, the hurt, the emotions, etc. Totally right. For her that’s a problem. Me? I think that’s a good thing. What’s the point of complaining or making a big deal of stuff that is out of my control. It is what it is. Get over it. She tried to talk me into believing that I shouldn’t suck it up and instead get help (in the form of another pill). We’ll see.

Finally, she said the WORST thing anyone can say to a person with pain. She wanted me to understand that “It’s all in your head.” She really said that … and I called her on it. Told her although I understood what she was TRYING to say, she should never use those words. She tried to weasel her way out of it. “I didn’t say it was all in your head.” YES, you did. “Well, what I meant, it’s biology …” Yes, I know what you meant – the brain controls the pain receptors and so while there is a physical deformity in your spine and your back hurts, we can possibly make a difference by taking a pill that interacts with the brain’s pain receptors.

Not sure I’ll go back to her … or what I’ll do. I’m just so tired of doctors … and tomorrow I go to the sleep apnea dentist to get my mouthpiece (hopefully that will allow me to sleep better); Thursday I go to the orthopedist for a follow-up on my shoulder pain (it’s at 50% and maybe that’s good enough); and Friday to my primary care for the 2^nd part of my physical.

Tests and Timing

This week, I had a bone density scan and a mammogram – part of my annual physical routine. The mammogram is no big deal. As I have written before, this is the time I appreciate my large chest. Big boobs are much easier to mammogram; there is something to put on the table and x-ray. Women who have no boobs face extra pulling and squeezing. Not that it is unbearable to anyone – so get your mammogram!

I am interested in the results of the bone density scan. Since I broke my back, I have had these scans every two years. Just want to make sure that the bones are not getting brittle or more fragile. Don’t want another break! For several years, I took fosamax (you have seen the ads; it promotes bone density and growth). Sounds good, but there are some risks. Since I started taking it well before menopause (the normal time to start) and have taken it for so long, I decided to take a break. Now this scan will show the results of NOT taking the fosamax. Then we’ll determine next steps.

The other issue this week is WAITING. My regular counselor suggested I go see a psychiatrist (I’m not ready to discuss the personal part of the counseling yet). So I called for an appointment. The doctor can see me Monday, November 15 (a cancellation) or December 16 – nothing in between. And they require a credit card authorized for a $225 fee if I don’t show up or cancel. Rationally or logically, I understand – doctors are busy and their time is worth money. Of course, I’m not totally rational or logical right now – that’s probably why I am going to a psychiatrist. I don’t like giving out my credit card number when I don’t know you; $225 is a lot of money AND I don’t think anyone should be so busy they can’t see your for five weeks. And the person who answered was NOT anything near empathetic when I voiced my concerns.

I still don’t get the medical community. Unfortunately, I am forced to play their games.

Doctors, Needles and Questions

This week has been all about the doctors – physical time, blood work, flu shot and a new (to me, not to the practice) P.A. at the pain clinic.

Jeff, the P.A., wondered why I didn’t have a TENS unit that I used regularly. Because no one suggested it before? In addition to potentially helping the back pain, he thinks it could also help the shoulder pain. The cortisone shot I got two weeks ago, wore off after 12 days (most last around 3 months). We talked about physical therapy and why it doesn't help my back. Jeff thinks either PT or the TENS would help – after a year. A year? Yup, a year! I’ve had the pain for seven years (since the break) so I should expect the therapy to take a long time to help. Now that’s frustrating to think about. Let’s use a TENS machine which uses an electrical current to stimulate the nerves every day for a year before it stops irritating the back and helps. They are ordering me a unit that will get at my next monthly appointment.

For now, nothing else changes. Pain the same (worse today because it is raining, but the same in general). Medicine the same. Diagnosis the same. Treatment the same. Same sh** … different day.

Next stop: Wake Radiology for a mammogram and a bone density test. Forget the updated guidelines, I still get a mammogram every year and a bone density test every two years.

A Place for Everything and Everything in its Place (ALMOST)

I have been in a major de-cluttering mood lately (and it’s not even spring cleaning time). How come our home offices always get so cluttered? It seems like everything ends up in the office.

Today I am feeling good because my home office is newly refreshed, clean, organized … almost. As you can see, my desk (right) is neat. Back in my General Motors/Saturn years, we went through a period where all of our desks were marked with tape where everything went – phone, note pad, scotch tape, etc … all had specific places. Now, I haven’t gone that overboard, but I definitely found a neat, organized place for everything (on my side).

Mike’s side is a little different. I did clean and dust everything on Mike’s desk. He has SOOOOO many wires though, I gave up trying to make them neat. And, notice the box on the floor next to Mike’s desk – that’s all his ‘extra’ stuff that doesn’t have a good home. Ranging from old (very old) games to notes to extra cables, I put everything that didn’t fit into a box. I wonder how long before Mike makes an effort to go through the box. I’m not holding my breath. Next week, I’ll just haul the box to the basement for storage and see if Mike even misses anything.

The frustrating part? I went through a box of old pens/markers to throw away those that no longer wrote. Tried each one. Not heavy lifting, no big movements, but that repetitive click, scribble, click … probably 150 times or so … took me down. OUCH! Even though it hurt my back/shoulder, it was worth it in the long run!

I know that in time, more stuff will just appear, but for now, I love the clean office!

Apple Pie to Soothe the Soul

In my feeble attempt to trick my mind into believing that I am not worthless (because I hurt and I don’t work), I try to accomplish at least something every day. Yesterday I made an apple pie.

In the morning I went to the Farmer’s Market in Raleigh and bought a bunch of fresh, delicious apples. I loved that each vendor had samples of the numerous varieties. Side-by-side sampling makes a difference in deciding which tastes better for baking pies or plain eating. Who knew there were so many choices – Black Arkansas, Mutsu, Honey Crisp, Sun Crisp, Golden Crisp, Winesap, etc. YUM! In the afternoon, I baked my pie including a home made crust.

It took me all day. Some of you may laugh – how hard can making a pie be? But for me, the peeling and slicing of 6 cups of apples (maybe 15 minutes max) was torture. With rest and pain medicine, I did it! So that was my accomplishment for Thursday … and breakfast today! YUM!

Barometric Pressure Falls; Sleep Decreases

Wow! The weather changed big time overnight. Yesterday, the Midwest experienced major storms and overnight that front moved into North Carolina. I know because I did not sleep. Changes in barometric pressure affect my body (in the past I kept an excel spreadsheet documenting these changes and my pain level).

My body ached. Lying on my t5 area felt like lying on crushed stones. OUCH! I tried sleeping in the master bed but that wasn’t happening and all I kept doing was waking my husband, so I moved to the guest bed (which is another air bed and fairly comfortable). Still, sleep was not happening. Finally, I got up and put a Flector patch (topical NSAID that surprisingly works for me) on my back and moved to the living room reclining chair. I also took my pain medicine. Finally, around 3:30 am, I got to sleep for about an hour. At around 5 am, I moved back to the guest room bed and slept for another hour or so.

The front moving in made for a very long, short night. I’ll definitely need a nap this afternoon. The barometric pressure is holding steady and I am finally feeling a little less pain. These are the days I think about my mom’s advice to move to the dry, steady climate of Arizona.

Election Day is November 2

I am studying the ballot for the upcoming election. I tend to NOT pay attention to the commercials … especially if they are bad mouthing an opponent. I don’t want to focus on what someone else does badly; I want to know what you ARE going to do – what is your position? It’s easy to whine and complain about others; it’s harder to stand up and give your word and your positions.

As many of you know, I am interested in what the North Carolina legislature is going to do regarding the war on prescription pain medication abuse/addiction/diversion (while not impacting the rights and privacy of people with pain). So, I emailed the four people who are running to represent me in the state house and senate.

I asked them: The State of North Carolina is considering what actions to take to fight the war on prescription medicines and to reduce unintentional poisonings/deaths. NC sheriffs are asking for enhanced access to the NC Controlled Substances Reporting System so they can have access to those people who fill prescriptions for opioid medicines. The FDA says that opioids are an integral tool in fighting pain. There are privacy issues. There are health issues. They are abuse/addiction/diversion issues. Law enforcement, people with pain, doctors, pharmacists, etc., all have valid opinions. Where do you stand on this issue?

• Nelson Dollar, incumbent representative: did not respond.
• Robin Anderson, running for representative: did not respond.
• Richard Stevens, incumbent senator: responded one week later saying, “You are right, this is not a simple issue. In general I am supportive of legislation that gives law enforcement the ability to vigorously fight crime. I also support an individual's right to privacy. If you want an either or answer, I would tell you that in this case I favor law enforcement. However, as I do on any legislation on which I vote in the General assembly, I look at the details of the bill to make sure it does what it is intended to do. If the legislation goes too far in invading an individual's right to privacy, I would seek to amend it in Committee or in the full Senate. Failing that, I would most likely vote against the bill.”
• David Donovan, running for senate: responded within 24 hours saying, “Thank you for your e-mail and thank you for visiting the web site and taking the time to get informed. You ask a good question. This is a very important issue, and when the proposal first came up in committee last month, I approached several pharmacists for their opinions on this question, including a number of pharmacists who've supported my campaign. While abuse of painkillers is a serious public health concern, I can't support opening up people's private medical information to law enforcement officers in the absence of a valid warrant. Right now, doctors and pharmacists have access to the database, and law enforcement can access it with a search warrant, and I would like to improve the current policy to require better compliance from pharmacies. Still, most people who require painkiller medications need them for legitimate medical purposes and use them responsibly. I think it would be violation of people's medical privacy to grant a general right of access to such private information, and so I do not support the current proposal, preferring to pursue other means of reducing painkiller abuse without infringing on the privacy rights of patients generally. I hope you find this answer helpful and thorough, and I would be grateful to have your support when early voting begins. Thank you, and have a wonderful day.”

I bet you can guess which response hit a home run with me. I realize that is just ONE issue, but it’s an important one to me. If it’s important to you, take heed! VOTE!

Sleepy and Suffering in Insurance Purgatory

In early October, I saw a dentist specializing in sleep apnea for a consultation on a mouthpiece to replace my severely under-utilized CPAP machine. I believe that most of my gasping for air and part of my inability to sleep is related to mouth problems; not nose problems. The dentist reaffirmed my diagnosis of a weak chin and jaw line which probably recedes when relaxed closing the airway. The CPAP machine doesn’t work for me and I believe the mouthpiece that moves the lower jaw forward could help. Problem is – insurance doesn’t get it.

The dentist is considered out of network although there are ZERO other dentists in the area (or in the entire state) that do this work. A pre-certification form was submitted to Aetna to consider making them in-network (It’s a savings of $500+ for me). Now I’m in insurance purgatory waiting and waiting because I called and asked the insurance company how the process worked.

After patiently waiting two weeks, I called the insurance company. I did the mandatory button pushing and asking for a representative for 12 minutes before finally getting connected to Byron. Byron said a non-participating request was under review. I asked him to explain to me the process of the review and a typical/average length for getting an answer. He said he couldn’t give a typical turnaround and that he had no further information for me. I asked him who would have further information. I got put on hold --- for 10 minutes.

How hard is it people to explain the process and help set the customer’s expectations? I guess it’s hard, but finally, after repeated requests to speak to a supervisor (no need, Mrs. Pitcher), Byron said the review is conducted by a nurse and/or medical director where they try to find in-network doctors. The review can take up to 14 days.

According to the dentist’s submission records, 14 days was last week, but according to the insurance company, 14 days ends today. So I am patient … until tomorrow. I’m guessing I’ll get a late answer of no, because I questioned the system. Purgatory is no fun.

I like Duke and my “new” shoulder

First, the funny feeling in my shoulder after yesterday’s cortisone injection has gone away. Hubby Mike says it might have been a temporary nerve block that caused a kind of/sort of paralysis feeling in my arm. It just didn’t feel right – like after having Novocain in the mouth and your face feels funny. But that’s gone now. And after ice and an ibuprofen last night, my shoulder is at about 85%. HOORAY! I could even sleep on my right side again. I like this!

This morning, I went to see a different Uro/Gyn. I told you a while back that I had that embarrassing personal problem – a uterine prolapse. The first doctor I went to (ok, I’ll tell you … she was in the UNC healthcare system) did not meet my expectations. I should have figured it out when she said, “I treat hundred of these every month, it’s no big deal.” That might be true to her, but to me, I was the ONLY ONE that mattered. After two appointments and two different pessaries – neither which fit or helped – I decided a different medical team was needed.

I went to the Duke Women’s Specialty Center. LOVE, LOVE, LOVE them. Nurse was friendly, supportive and helpful. First doctor, a fellow, was wonderful. She went through my history thoroughly and with much insight. Doctor was great too! They measured, fit, suggested, recommended, laughed, gave me time to ask questions and walk around to see if this pessary was the one. Time will tell on the actual comfort of the pessary, but they even gave me options on returning as needed. YIPPEE!!!

So, today, my private parts are happier, my shoulder is working and I’m concentrating on getting the t5 back pain under control (I don’t mind because it’s more irritated because I got to hold and play with baby Brady so much last weekend). The bad news, I stepped on the scale. An ice cream binge and last weekend’s eating Chik-Fila, Arby’s, Cici’s Pizza and JAlexanders (as well as airport snacks) added up. I’ll tell you what I’m doing about that later.

So many stories to tell

Where to start? Nashville … baby Brady … computer problems … shoulder pain … or my inability to type correctly because of the shoulder injection (I don’t think that’s supposed to happen so I’m keeping an eye on it) … fun fall weather … being in purgatory waiting on the health insurance company … life in general. Guess I need to write every day for a while to catch up.

First, I spent last weekend in Nashville, Tennessee visiting my daughter, son-in-law and 10 month old grandson. I am so glad I went because Brady is at a wonderful age – crawling around, inquisitive, sweet, fun. By the next time I see him, he’ll probably be past crawling and into walking. I loved spending time with him this weekend. I was planning to post pictures, but my computer is acting up again and won’t allow me to photoshop pictures.

I guess we’ll start looking for a new computer soon. The current one has been acting up – off and on – for quite a while. So much for the Windows registry. It pretty much sucks.

I’m off to find the info sheet the orthopedist gave after my cortisone injection. What is going on?

Speaking to the NC Legislature

Today I had my five minutes of fame – I spoke at a meeting of the North Carolina Joint Legislative Health Care Oversight Committee in Raleigh, NC. They are discussing ways to reduce prescription pain medicine abuse and diversion. So far they had only heard about the huge problem and how TOO many people are getting TOO many pills and SO many people are becoming addicts. (Notice the use of too and so – not real numbers.)

I added a different side to the issue – the voice of a person with pain who is not addicted and has never gotten high, but does use an opioid to get some relief from pain.

Fighting nerves and dry mouth, and speaking at the very end of a long meeting, I’m still happy. After the meeting, one representative told me, “It took guts to get up there and speak that message. Thank you.” So, I guess it was worth it.

Now, I’ll keep my eyes and ears open and see if they took my message to heart. I said, “We must not decrease access to appropriate pain treatments or compromise people’s right to privacy without due cause. Please don’t allow people with pain to become the casualties in this war on drugs.”

Pain Awareness Month is Over; Pain Still Exists

My daughter reminded me this morning that I haven’t blogged in a while. I know and I promise I’ve been thinking about it. Once September – Pain Awareness Month – ended, I was exhausted and needed to rest. So, let me catch you up on life…

After our local ABC TV station did a story on pain, the rains came … so the story didn’t make it to air as scheduled. But, it did make it … on October 2. Please take a look – click here to see TV segment – ABC did a great job of getting out the message. THANKS TISHA!

I pretty much ignored my own body during September, so now I’ve started physical therapy for tendonitis in my shoulder and of course the underlying cause is T5 and the weak muscles in that area and the compensation I do to protect the back. Let the increased pain and irritated nerves begin (again). Hopefully, a couple of weeks PT will help and the hurt will lessen.

I also returned to counseling. It’s always good to have an impartial (and smart) person to talk to. Rebecca and I talked about how frustrated I get working with ‘stupid’ people. She helped me realize that these people were not ‘stupid;’ they just performed differently than I expected or desired. We also decided that the frustration is exaggerated because I am exhausted so my first priority is REST so I can function normally (for me) again.

And finally, pain still exists and I am still focused on the North Carolina legislators and their current discussions on what to do about Rx drug abuse/addiction/diversion. While I agree that problem should be addressed, changes should NOT negatively impact the rights and privacy of people with pain. I hope I get to tell them that message next week at their committee meeting.

Saturday is TakeBack Day

GOT DRUGS? Saturday, September 25, 2010 is National Take-Back Day where you can turn in your unused or expired medications for safe disposal. Learn more (and to find your drop off site) at the Take Back Day website.

It’s not OK to hold on to those percocet pills you got years ago when you had your wisdom teeth pulled (or whatever example you want to use) just in case you may need them someday. It’s not safe. Drugs (even legally prescribed) laying around can be stolen, abused, mis-used (think kids going through the medicine cabinet looking for some fun on Saturday night when you are out).

I’ve been cleaning out the medicine cabinet(s) at my house and will take a bag full of medications to my local take-back collection site. I hope you do too!

ABC News Comes to my Pain Talk

Last night, I talked to the Triangle Fibromyalgia Positive Energy group about Pain Awareness Month and our local ABC TV station came. Tisha Powell and the cameraman spent over 45 minutes with us getting the story. Can’t wait to see the story on TV … probably next week.

The picture is of Anchor Tisha Powell interviewing group leader Cathy McCarthy.

I just may become a regular viewer of ABC 11.

I need a nap!

In many ways, busy is good. Just not right now. I have been so busy, the pain has increased … and so had the need for a nap. I took yesterday off from thinking APF and pain. I never made it out of the house and spent the day trying to take care of myself.

Today, I still required a nap and I’m still not near 100%, but I did get out and delivered an APF display to another area library. I got a request to speak to another area pain support group. And, I got a call from one of the anchors from the local ABC evening newscast – they want to do a story on Pain Awareness Month next week. Cool! That’s after I gave two presentations on Tuesday. I guess I deserved a day off. Heck, come October, I think I’ll need the month off. But, I’m trying to make an impact.

1 voice in 10,000

I just added my voice to the American Pain Foundation's 10,000 voices campaign during Pain Awareness Month. You can watch me here. And you can add your own voice. Please join the APF Virtual March at www.APFActionNetwork.org

Parts is Parts

The biggest news is actually the article I was quoted in (click here to read) and the amazing amount of follow-up it produced. I’ll write more on that later, but that’s not my #1 priority right now (plus all the phone and computer work has me exhausted and in more pain than usual).

But first, yesterday I went to see an Orthopedist because I am experiencing increased pain in my arm. The pain clinic doctor (who doesn’t really diagnose, just treats specific pain) said the arm pain was referred from my shoulder. This got me concerned because 18 months ago my husband had rotator cuff surgery and while it worked for him, I don’t want to do that. My x-ray is clean. The pain is rotator cuff tendonitis and the treatment is physical therapy and stretching exercises. Although the doctor says people wear out, I still think the pain is related to my back. I definitely compensate for the back pain by using my right shoulder and arm differently.

I am happy it’s only tendonitis, but I’m concerned that doctors only look at parts and pieces and not the WHOLE body – the entire body is one big unit and is inter-related. It’s not just independent parts and pieces. I so miss my primary care physician (who left her practice) who cared about my WHOLE body. I hate being just parts and pieces.

OMG … Sweet Shots at Chili’s after a Crazy Day

The synopsis. I PLANNED on …

1. getting ready early to go to the Raleigh City Council Meet to receive a proclamation naming September as Pain Awareness Month

2. resting

3. going to the meeting

4. coming home and resting. Period.

So much for the plan. At 9:35 am, I heard about a NC legislature meeting regarding prescription drug abuse. By 10:10, I was at the meeting in downtown Raleigh listening to some sheriff saying he is seeing lots of people get ‘large’ doses of Rx pain medicine and then becoming addicts; it’s a huge problem (with no statistics to back up his claims) and he needs access to the reporting system so he can aggressively target abusers because the doctors aren’t doing a good job (and I’m to believe that a sheriff knows more about my pain medications than my doctor … hmmm). Anyway, I’ll have more to report on that later as we develop a plan to make sure that the legislature (and the public) hears another side of the story and that people with pain have a voice in the development of the NC state government plan.

Then on to the Raleigh Council Meeting where Cathy of the Triangle Fibromyalgia Positive Energy Meetup Group and I picked up the proclamation!!!

Then home to deal with reporters and other ‘pain’ requests. And I hurt. So much for cavorting around Raleigh (in shoes no less because I thought that would be appropriate for the government). I just told my husband (my wonderful husband!) that I couldn’t chop an onion if my life depended on it. So, he took me out to dinner at Chili’s. And, we ended dinner with Sweet Shots – cinnamon roll, red velvet cake and fudge brownie. YUM! I may be in pain, but I’m happy!

Catching Up Day

The past week has been a haze. A wonderful weekend in Atlanta. Then delivered Pain Awareness Month displays to five area libraries. Went to my monthly pain clinic doctor appointment. American Pain Foundation conference call. Sent media alerts all over preparing for September 7 Raleigh Council meeting where I’ll receive a proclamation naming September as Pain Awareness Month. I am worn out.

Today, I am resting and catching up on stuff around the house as well as making future doctor appointments.

I saw a new doctor at the pain clinic and told her about the pain in my arm. I always think everything is related to my back, but maybe this isn’t. She said tendonitis or arthritis or bursitis and thinks shoulder. 18 months ago my husband had rotator cuff shoulder surgery. In my big push to avoid the pain getting worse and absolutely needing surgery, I decided to go to the orthopedist to get my shoulder checked out. I hope it’s just arthritis and NSAIDS and pain medicine is the treatment. Appointment next week.

I also have been diagnosed with a uterine prolapse. I was not happy at all with the treatment by the doctor I saw. She didn’t listen to me and help me find the right treatment plan. So, I’m going to try another doctor in another practice. There aren’t a lot of Uro-Gyn doctors around here. Hopefully, this one will be better than the first one. Appointment: October 22 (yup, it takes seven weeks to even get to see the doctor).

Health care reform? I say fix the current system first … before adding more people into the system. Happy Labor Day weekend … and don’t forget to go to www.APFActionNetwork.org to learn more about Pain Awareness Month.

Day 1: Pain Awareness Month

Please go to www.APFActionNetwork.org to sign up for the Virtual March. Stand up for people in pain.

On Day 1 of PAM, I went to my regular monthly pain clinic doctor appointment. I saw a new doctor so we spent extra time talking about my pain. I said that my pain had increased lately but I wasn’t sure if it was a tolerance build-up to my current medications (which includes extended release morphine) or an increase in activity (in preparation for PAM). The idea of medication rotation was introduced – should I switch to fentanyl patches? I don’t know. That sounds kind of scary, so we decided to wait till the end of PAM and see if return to lower levels of activity help better control the pain.

We also discussed “paying a price.” I said when I do something ‘stupid’ like going to the Braves game and carrying around my awesome grandson, I hurt more. The doctor suggested I should substitute ‘enjoyable’ for ‘stupid.’ Everyone deserves some enjoyable times!

After the doctor appointment and PAM display deliveries to 3 libraries, I almost fell asleep driving home. Could barely make it inside. Found the first chair and took a nap.

But, the good news is sitting at the pain clinic waiting room, I talked to several people who were excited about the information I gave them on the American Pain Foundation. And the governor’s office called – they are sending a letter of support for APF/PAM efforts. Hooray! Let’s all join together to make a difference for people with pain.

What a Way to Start off PAM

In pain.

September is Pain Awareness Month. And what am I doing on the first day to celebrate? Going to the Pain Clinic for my regular monthly appointment. That makes sense, huh?

I am in pain right now … but as I usually say … it’s worth it. This past weekend, we went to Atlanta. My organizational-savvy daughter planned a family get-together which included getting together with her family from Nashville and my husband’s two older sons (and a girlfriend), a Braves game (the best ending ever), good dinner, and lots of fun. The best part for me was holding grandson Brady on my lap while he napped during the game.

Why, oh why, does holding a baby or walking or standing, etc. have to hurt so much? It’s frustrating. And now I am still recuperating. But before I finish recuperating, I’m off to set up Pain Awareness Month displays at several area libraries.

I fight pain by taking action! Will you join me in this month’s Virtual March? Go to www.APFActionNetwork.org.

Measuring Success

Yesterday, I was talking on the phone talking to my mom telling her what I was doing for Pain Awareness Month. I made multiple library displays, packed numerous APF bags with handouts, scheduled half a dozen community presentations, organized proclamations and did all the supporting media alerts/releases. I’m tired. And it’s not even September yet.

We commiserated about how busy I have been. Then I really thought about it. Truth told … this work equates to about one to two hours a day a couple days a week … in between resting time (stuffing bags, cutting and pasting on display boards, etc – all extremely painful). Put in perspective, it doesn't compare to a REAL workload.

So, how do I measure success? Success used to be measured in how much work I did, how much money I made, how many people I helped. Activities. Billable hours. Numbers. Recognitions.

Now, it is measured from within. If I gave it my all … if I tried … if I did MY best … if I know inside me that I lived up to MY potential … then I AM A SUCCESS!

Yummy Doughnuts – I overdid it!

And I don’t mean by eating too many doughnuts. I overdid it when I made homemade doughnuts this morning. My husband’s office is moving today, so Mike can’t go to the office to work. Instead he is working from home. Yesterday he mentioned that he was bummed out because Friday is doughnut day at work (someone picks up a couple dozen doughnuts on the way in to work) and that wouldn’t happen with the office closed.

I heard and I took action. I got up early this morning and make the dough. Went back to bed for an hour while it rose. I rolled and cut the doughnuts, cooked them, covered them (some with cinnamon-sugar, others with powdered sugar, and some with a glaze).

YUM! Mike ate (and ate some more) and then said, “You either are masochistic or really like me … or maybe both.” I replied, “I’m definitely not both” as I sat down and rested my back contemplating if I can take some pain medication this early. The rolling, cutting, cooking, dipping, sprinkling, etc ALL aggravated the muscles in the back creating excruciating pain.

Now, I will rest for much of the rest of the day. The pain definitely is no fun, but the look of enjoyment on Mike’s face was worth it. I guess I really do like him … a lot!

Visiting a Pain Support Group

To help spread the word about September’s Pain Awareness Month, I’m speaking to as many community and pain support groups that I can find. Today, I visited a Fibro/Pain Support group in Cary, NC.

Before I presented my information, we went around the room introducing ourselves and our issues. During that time, we talked about journaling, different treatments, caregiver support and so many other topics that I include in my talk. Made giving my talk even easier.

Visiting these groups reminds me that pain comes in very different forms and each individual’s pain is important to be recognized and treated seriously. But, what stands out in my mind is that each person feels many of the same losses (identity, friends, hobbies, relationships, etc.) So, people with pain, hear me: YOU ARE NOT ALONE! YOU ARE NORMAL!

Also, people with pain – be nice to your caregivers! Don’t take advantage of them. Don’t abuse their help. And caregivers: Set boundaries. Take care of yourself first. You are no good to anyone if you are not good to yourself first.

To that special person with pain who is also a caregiver I met today: WOW! You are so amazing. So special. Please be kind to yourself and know that prayers are being circulated for you!

Today, I received two more calls for presentations and another library for a display during September. Woo Hoo!

Yesterday’s Fun Makes for Today’s Rest

Last night, Wendy and I went to the Colbie Caillat and Sheryl Crow concert at Koka Booth Amphitheatre in Cary, North Carolina. The setting is very nice. It’s a medium size outdoor venue with lots of trees on the border. Once the sun went down, even the weather was comfortable.

I like Colbie Caillat music anyway and the band sounded really good. I watched the bass player with interest – my husband plays bass. This guy had the look and style that I think my husband should emulate.

Then Sheryl Crow came on stage. I was expecting Sheryl standing around playing guitar and singing nice ballads most of the evening. Nice, but nothing spectacular. I was pleasantly surprised. She has a new band and the performance was much funkier, higher energy than I expected. I liked it.

Wendy is one of my ‘person with pain’ friends. I don’t know why I feel the need to have to add that description, but for this story it’s helps. Wendy has a handicapped parking sticker. There’s both a positive and negative side to that. Yes, we parked up front meaning less walking. That’s good. But, by the end of the concert – sitting, standing, walking, clapping, etc – we hurt and needed close parking. So, close parking isn’t always a great thing … it means we are paying a price for the fun we had. And today, I’m still paying that price. But, as I usually say, it was worth it!

Always Tired

I woke up this morning tired. I’m always tired.

Part way through the day, I’ll be trying to do something productive at my computer and I’ll fall asleep sitting at the computer. That’s only a small problem. It was a much bigger problem when I was driving home from Tennessee Monday. The Raleigh-Nashville drive that used to take just over 8 hours, now takes over 10. I had to stop several times to take short power naps.

Am I tired because I don’t sleep well? Or because my brain uses too much energy fighting pain? Or because I take prescription pain medication? Do I sleep poorly because I hurt? Or do I hurt more because I sleep poorly? Where does sleep apnea fit in?

No matter what the root cause or the symptoms, I am tired … always. I plan my life around being tired. How do you deal with it?

It's grandbaby time

Leaving my husband at home, I drove to Nashville, Tennessee today to spend a long weekend with my beautiful daughter Katie, her super husband Jason and adorable grandson Brady. I get Brady all to myself Friday and most of Saturday while Katie and Jason are at work and then at a wedding. Hooray for Brady and me!

The drive was really, REALLY long. I drove through several torrential rain storms with accompanying thunder, lightening and hail. The windshield wipers on as high as they could go still couldn't keep up. And crazy drivers don't know how to drive in rain -- slow down and increase the distance. Saw several accidents including a flipped 18-wheeler. The rain and the accidents definitely made the drive longer than usual.

And, of course, holding the steering wheel causes the muscles in the back to contract meaning spasms and increased pain. Big OUCH! It's time for me to lay down and relax the back ... I have to be ready for Brady time in the morning.

I'm always considering if chosen activities are worth the price I'm going to pay for increased pain. In this case, the answer is absolutely YES!

Two People to Meet – Depending on Where You Live

I highly recommend Jane Paul and Julie Donnelly … depending on where you live. Both are massage therapists (but not the Swedish massage type) who work miracles on the body. Jane lives south of Nashville, Tennessee and Julie lives in Chapel Hill, North Carolina.

I've known Jane for years and she has worked on my body too many times to count. To me, she is a healer and miracle worker. Since moving to NC, I haven’t found anyone that can compare to Jane … until today.

Today, I met Julie Donnelly. She uses many of the same techniques that Jane uses and even a lot of the same words. I found Julie through a Google Alert – my key words are NC, chronic, pain. A link to a video by Julie talking about self-therapy focused on the iliopsosas muscle caught my attention.

Sometimes I just want to forget about my back pain. Even though it’s all connected, I wanted to focus on hip issues. Even if my back pain can’t be fixed completely, I want the rest of my body to work! That’s where the iliopsosas comes in.

Not only did she perform miracles, she taught me how to perform them myself … using a tennis ball and a rolling pin.

I’ll talk more about Julie in the future. For now, visit her web sites, www.julstro.com and www.SportMassageChapelHill.com. I wish body miracles for you too!

The Contradiction in my Rock 'n Roll Brain

Rock of Ages, a local band that plays 80s rock ‘n roll covers played at Fat Daddy’s in Raleigh Saturday night. We went. They played all the favorites. I’m still singing, “Pour some sugar on me” from Def Leppard and "Smokin' in the Boy's Room" by Motley Crue and Kiss and Cheap Trick and Poison and ... well, you know.

Not only was it a band playing fun music, it was like a concert – a show. Front man Steve Quinney has the 80s vibe down including jumping up on the bar, running through the audience and getting everyone to join in the fun. And that’s where the contradiction in my brain happens. Steve is old. Nothing wrong with old – I’m old too. But I just don’t think of long hair, high energy rock being performed by someone old. When I’d listen, it sounded great. When I’d look, I’d get confused. I’m not saying it’s wrong for a senior citizen to have so much energy and do something so cool – it just doesn’t fit the image I have of rock ‘n roll.

Having said that you should follow Steve on FaceBook – he says he has low self-esteem and needs friends. I think you should follow because he says funny *$%#.

Beyond the music, I did three smart things Saturday night – I sat (in my prior life, I wouldn’t be caught sitting at a bar … bars are meant for standing and dancing), I looked straight at the band (no twisting my back) and I drank Coke (so I could drive home after Mike downed a couple beers!)

Fibro Positive Energy is a good thing!

Yesterday I met two super, intelligent, fun, positive women … who have fibromyalgia. I’m busy drumming up ‘business’ for the American Pain Foundation’s September Pain Awareness Month and had lunch with Cathy and Kristine, the founders/leaders of a local Meetup.com fibromyalgia support group.

It was wonderful to speak with two people who despite facing pain every day, don’t make the pain their #1 and total focus. Exactly how I try to be. They are so full of positive energy. I loved them … and they introduced me to Indian food (yup, I’m 54 and have never had Indian food before).

We ate at Azitra in the Brier Creek area of Raleigh. Thankfully, they helped me pick a dish that wasn’t overly spicy. I enjoyed the food, although I’ll want to try it a couple more times before I decide if I want to add it to my favorites list. I’m still probably more of a pizza person!

Anyway, Kristine and Cathy have so many great ideas about pain advocacy and they’ve been doing this longer than I have. I look forward to developing both a partnership for pain with them as well as a personal friendship. So, despite heavy rains yesterday (good for the yard, bad for the driving and the body), it was a great day.