Brunch at Brigs

Yesterday, I met Wendy at Brigs Restaurant in Cary, NC, for brunch. Yum! We both had huge omelets, fresh fruit and an English Muffin (I really like English Muffins ... why don't I buy them to eat at home?).

Wendy is a ‘person with pain’ friend from my chronic pain support group. In real life, we probably wouldn’t have found each other and been friends. She likes to DO BMX; I like to WATCH NASCAR. She has two teenage girls; I am much older with no children at home. She has a big personality and loves to go do things with friends; I am more comfortable home alone in my cave. But, we have become good friends because we look beyond the differences and see the common ground (pain and the fight to get effective pain care) and how we can help and support each other through our good and bad days.

Wendy knows that I’m not much of a phone person (I prefer email), but she likes me anyway. Before I meet up with her, I’m always worrying … what will we talk about, why am I doing this … Then we meet and we are non-stop talking, sharing, laughing, learning.

I’m always amazed at how different people handle their pain. I choose to limit my activities to one a day. Going to brunch was my activity for the day and then I went home to rest. For Wendy, if she can get the energy and motivation to move at all, she keeps going till she can’t. Then she’ll climb in bed for a couple days if she needs to.

Whatever works. What works for you? How do you manage your life with pain?

Why am I Painting ... and Hurting Myself

Big time ouch yesterday and today. I tried to do some painting yesterday. Big Mistake. BIG Mistake. I sure am paying the price today.

So, why am I doing the painting? A while back we hired a ‘professional’ paint company, First Aid Painting. NO! Please save yourself and don’t call them. I must admit the owner is a great salesman and has a great reference book. But, when it came down to doing the work, it didn’t work. Long story short – he did NOT live up to the signed contract or his verbal commitments. After several failed attempts on his part, I wrote and said no more and asked him to call to make arranagement to pick up his four ladders. He never called. I guess he’s too embarrassed to speak with me ever again.

Although most of the house is completed, the deck still needs painting. What was I thinking? It’s not hard work, but holding a paint sprayer definitely took a toll on my back. And the job still isn’t done. Guess I’ll head to Craig’s List to find an inexpensive handyman to do the easy, but tedious and physical task.

So much for professional painters. And today, I take the maximum allowed dose of my prescription pain medication and REST.

Computer Work is a Back Killer

Most people may assume that sitting in front of a computer is easy work. Some may say they get tired of sitting all day and it hurts their neck or something. But, how many people realize that for every click of the mouse or character typed a muscle is engaged in your back (in addition to the neck and tightness average people feel). For me, that means torture. For me, that means minutes in front of a computer instead of hours.

Today, I began distributing my release/announcement titled “Cary Resident Takes on Statewide Pain Awareness and Action Efforts (Advocate Awarded Scholarship to American Pain Foundation’s Advocacy Summit)” Yee-hah. I guess announcing me as a NC American Pain Foundation Action Network Leader makes it more official.

For now, after more than 5,000 (800+ in this blog post alone) characters/arm movements, it’s definitely time to rest. I think I’ll post the release here, when I’m sending it out to others … tomorrow.

Southern Women's Show -- A Family Tradition

Today I went to the Southern Women’s Show in Raleigh. In the 1990s, my daughter and I went EVERY year to the show in Nashville. I would take off work, keep her out of school and we’d go enjoy a mother-daughter day of makeovers and fun. Back then, Kroger had an entire section of delicious samples to test. Those are good memories for me.

Nowadays, the food samples are few (they did give out Skinny Cow ice cream, yummy), the lines are too long and I am too tired to make it a major event.

There must be a lot of people in pain, because there were a lot of pain-reducing exhibitors. One was a Go Green Pain Relief which offered a spray “all natural pain relief.” It included grape seed oil, jojoba oil, aloe vera, vitamin e and Australian oil of Eucalyptus and promised to relieve or stop pain from arthritis, fibromylgia, lupus, etc., etc. The lady rubbed some smelly stuff on my neck and shoulder. It did make my muscles relax immediately – for about 10 minutes. Then – not so much. And it only cost $49 – I didn’t buy it.

I did get a free ‘computerized spinal examination through surface sEMG which measures relative levels of electrical activity generated when muscles contract.' Sounds like a bunch of goobledy-gook. My graphic didn’t have much green (normal) but lots of reds which show high tension on my left side and below normal tension on the right side. The structural damage in my back from my broken back at T5 means I overcompensate (work harder) on my left side and don’t do much with the muscles on my right side where the pain is. Makes sense to me.

If I thought it would do any long-term good, I’d go to the chiropractor, but I’ve done that before and it doesn’t fix the damage nor the pain. Guess I’ll just take a pill, lie down and relax to relieve the pain. I’m still glad I went. The memories of time with my daughter are good!

Walk a Day in My Shoes (or in My Wheelchair)

I just read an email from a person (a veteran and senior citizen) who had a negative experience with a doctor in the VA system. The doctor challenged his use of prescription pain medication and questioned whether he was malingering and using these medications to avoid working. Horrible treatment. The saddest part is that this is NOT an isolated incident. It happens regularly (in and out of the VA system) to thousands of people who have chronic pain.

This person wrote: “If only this doctor could spend but a day in my wheelchair, and suffer the pain which I do and have, his attitude would definitely change.” That’s a powerful sentence and probably very true.

I replied: “You are not alone. Thousands of people feel exactly as you do and that’s why the American Pain Foundation is so important. The bottom line is that everyone deserves timely and effective pain management – and that sometimes includes prescription pain medicines.

Let me say that not everyone has to fight to get appropriate pain care. I now have a wonderful doctor and family nurse practitioner and am getting the health care support I need, but no one should have to fight for that kind of support. Every day I believe more strongly in the importance of uniting to take action and raise awareness of the undeserved stigmas and unacceptable treatment of chronic pain. Will you join me? Join with the American Pain Foundation so together, we can make a difference.

Back from Minneapolis

Minneapolis -- the home of Mary Tyler More. Yes, I found her statue just a block from my hotel.

After enjoying (and being overwhelmed) at the American Pain Foundation 2010 Summit in Minneapolis (and taking a day to at least partially recuperate), I’m back. I’ll be writing more (much more) about the conference and all I learned in the future, for now, the trip … in review.

I like Southwest Airlines. Unfortunately, this trip was on Delta Airlines. Nothing bad happened, just not up to Southwest standards. The plane left from a different, busier terminal. Coming home, I was at the furthest possible gate from the entry (walking is not my favorite activity with pain). Plane was crowded and I was forced to sit crooked to give the big (really big) person in the center seat enough room (crooked is not good for my back).

I will totally complement the Minneapolis airport, the light rail transportation system and the Radisson Downtown Hotel. Easy. Nice. Nice people.

One thing I learned about myself is I have spent so much of the recent years in isolation (I sit home alone most of the time because of pain) that when meeting with 150+ other people, it was overwhelming. So many people. So much talking. So much social interaction. It wore me out. Don’t get me wrong. All the people I met were wonderful and supportive and smart and motivated and many were also in pain. Still, whew. I need a rest … in my cave.

Coming soon … stories from the summit and what I am going to do to speak up for the millions in pain!

Off to Minneapolis for the Pain Summit

I just finished packing. I leave early (really early) in the morning for the American Pain Foundation Pain Summit in Minneapolis.

Years ago, I used to travel regularly for work and learned to pack light – 1 pair of black pants, 1 pair of khaki pants, 1 black shirt, 1 tan shirt and 1 print shirt. That makes 6 outfits – black and black, black and tan, tan and black, tan and tan … you get the idea. I usually fly Southwest and am not used to the checked baggage charges (bags still fly free on Southwest). This trip I’m going Delta. Despite my expenses being reimbursed, I don’t like to pay for a checked bag (it just doesn’t seem right) so I re-learned packing light. No airline is getting an extra $25 to $40 from me!

I’m nervous about arriving in Minneapolis. The best way to the downtown hotel is by light rail. I don’t really know what that is and my back (and the accompanying pain) doesn’t allow me to carry luggage too well. Thank goodness for wheels.

No matter what, I’ll get there and then rest and be raring to go – learning about the APF and what I can do to help myself and others who live with pain!

Rx Medicine Interactions

On Monday, I went to a doctor appointment with one of my good friends from our pain support group. Sometimes it’s good to have a second person there to take notes and listen – without the pain, ownership and expectations of the patient. And I’m a good listener and note taker.

Because of screwed up thyroid test results, she went to see an endocrinologist. I was impressed that he spent a considerable amount of time with her and gave detailed explanations of his thoughts. His take on her hypo-thyroidism – it’s a result of the prescription medication she is taking to boost the anti-depressant medicine. I don’t know if this is true or not (she is going to get doctor consent, get off the thyroid medicine and get re-tested), but it raises the issue of too many medications and too many different doctors creating more problems.

My neighbor has a multitude of issues – heart, failed surgery, blood pressure, stroke, and who knows what else. He told me about all the different pain medications he is taking and all the side effects he is having. I am all about taking the right medicine to help me feel better, but I try hard to limit the number of different medicines I take. Every medicine has potential side effects and, in my opinion, taking TOO many medicines can’t be good … even if the doctor said everything will be OK.

Doctors, please take the time to review ALL our conditions and medications and get ALL the medical records so you can make informed diagnosis. And patients, don’t just rely on doctors, you need to be your own advocate. YOU are in charge of your health, not some doctor(s).

One thing I do know that works is a twisted Frosty (chocolate with M&Ms) from Wendy’s on the way home from a doctor’s appointment. YUM!

Painting and Paying a Price

I don’t normally talk too much about my pain. I figure that if I focus on it less, maybe it will have less power over me. As I start figuring my way through the American Pain Foundation (what am I going to do, how am I going to make a difference, etc.) I feel I have to be more willing to talk about my pain.

For those of you who don’t know, short story – I broke my back in 2003. Pain still here. Thanks to morphine and a significantly limited lifestyle, I am not bedridden. Sometimes I do things (that I know I shouldn’t do) and then I pay a price. We paid a professional painter to paint our house. He didn’t do a good job and didn’t finish. Yesterday, I decided to paint the garage door to get it finished. Ouch. BIG OUCH! I only did a couple small panels. After that I took my immediate release morphine (for the acute pain) and then reclined for the rest of the day. I took a Zanaflex (muscle relaxant) at bed time. This morning – still OUCH. Guess today I will do nothing and try to recover.

Sometimes I just get the need to DO something … even if I have to pay a price later.

Interesting side note: I didn’t have any hot flashes during the sleeping hours (as I usually do from going through menopause). Could Zanaflex have a side benefit? I don’t take the muscle relaxant very often, but will try it again to test my hypothesis. Has anyone else had this side benefit?

Business Cards and Chocolate – Easy Ways to Please this Girl

Since, I’ll be out of town next weekend at the American Pain Foundation Summit, I skipped my monthly chronic pain meet-up today to spend time with my husband. I miss my ‘in-pain’ friends, but know that whether in person or through e-mail we will always be there for each other.

I need face-to-face time with my husband. Since I no longer am able to work, I sit home most of the time alone while my husband works (and works). Today, our face-to-face time included a trip downtown Raleigh to Escazu, an artisan chocolate shop. This is NOT ordinary chocolate, but handmade dark chocolate. YUM! We had been there before in the winter for a delicious hot chocolate (like no other) and now we went and bought a couple dark chocolate bars (we only bought them for the health value, yeah, right!). More time together when we watch the NASCAR race on TV tonight (we love NASCAR!)

Another way to please this girl? Business cards. I received my American Pain Foundation business cards today. I guess that means I’m official. Something as simple as a business card (even though I told the APF I didn’t need them) really makes me feel worthy. I guess I have value again.

Chocolate and business cards. What a great day!

APF Motivating Me to Blog

I’ve said this before, I need to get motivated to blog more often. I think I have a reason this time … the American Pain Foundation (APF). For months, I’ve researched their site, talked to several people and found I like what they believe in. Plus, I still have to find my next chapter in life. I have a friend who gets satisfaction from helping individual people. Not me. I continue to find that I am still a corporate nerd. I like the idea of working in a big organization and helping to make change. I’m a small cog in the bigger wheel, but I’m not the entire wheel. I worked for General Motors and Saturn Corporations for more than 20 years. I enjoyed that environment. Most people say they don’t like that world. Too many rules. Too many boundaries. Too many personalities. Too many unmotivated, unprofessional people you have to work with. I agree. That’s the challenge. I like rules – so I can bend them. I like to know the boundaries – so I can push them. So, here is the American Pain Foundation.

Not that they have too many rules or unmotivated, unprofessional people. But, they are an established organization … with a mission that I believe in. I think I have found my next chapter – volunteer work with the APF. My schedule. My limitations. Maybe, I can make a difference for people with pain.

So, it’s time to start blogging again and continue to tell my story.