Pain & Tired, Very Tired

[Guest guest]

Daily we wake up, and the challenge of getting out of bed begins. Someone said that they take inventory to see if all the parts are working. That truly says what we all experience.

Some days the pain is more than we can handle-- and we wonder why we keep on keeping on.

This is what I want to address. Why do we keep on keeping on? What happens when the Depression of chronic illness and chronic pain becomes bigger than our spirit can handle?

We do so because we have families that love us. We do so because we want to live, and work, and see another rainbow. We do so because we love listening to music, seeing a childs reaction at the first snowstorm, and hearing their precious laughter at trying to catch a snowflake on their tongues as it falls from heaven.

The grief that comes from chronic illness is often times unrelenting. At least it seems that way when we are buried in it. We question the constant pain-- and want it to go away. It seems that with all the advances of modern medicine that there has to be an answer. When that answer is not forthcoming, we find ourself in despair, and we want someone to understand that we aren't nuts, we aren't hypochondriacs, we aren't lazy, and we aren't trying to get our fix on painmeds.

With chronic illness, it is so much like losing a part of yourself. You no longer have the energy to work, to get on your best face, to go grocery shopping, or for a walk thru the mall. Best we stay away anyhow-- we don't have spending money to shop. so we find ourself sitting at home, isolated, and in very real pain.

"So great Tracie, you understand. I'm still in pain"-- is what you want to scream! Fix it!

If you don't have an MD that is willing to be serious with your pain issues-- find one that is. There is no sin in needing to be on pain medications. If what you are using is not controlling your pain-- take someone with you into the MD's-- and have a serious talk with him or her. There is no reason why in todays medical setting, that our MD's aren't up on treating chronic pain issues.

To control pain requires two things of us. The courage to be real with our MD's and family, and the ability to advocate for yourself. Yep, I said it-- fight for what you need.

Assertiveness versus aggression. We've had people come online and tell us that they ripped their MD's new assholes (ok, my words--but you get the concept); and that they still weren't heard. They yell at the receptionist--who is at best a messenger, that will be griped at by a moody, exhausted, MD and back-office nurse. The office staff then assumes that the patient has a hangup about pain and is a "whiner."

We know that's bullshxx, and we have a right to tell the MD that we aren't exaggerating. if they still blow you off- find someone else. Don't worry about the records-- get the test results from the hospital, labs, xrays, and screw the office notes from Dr. X. His opinion, as well as the that of the staff is one based on the programs from 60 minutes that say all workcomp claims are bogus and people needing pain medications for any reason are probably druggies.

In a second post-- I will explain pain control techniques. This post I truly want to tell all of you that yes, we have a serious illness. Your MD doesn't understand it- has formed an opinion based on the messages that he gets from his receptionist and nurse-- and that their opinions are more important than your reality.

So if the body language of the office staff is bad-- if you feel like maybe the MD is getting the "she called again, want's more Vicodin, we gave her 10 tablets last month, and she ran out in 2 days. . (insert bored, discompassionate voice at 6pm on a Monday night- so 100 phone calls have been answered and the hangover from the weekend play lasted until 2pm) and you've got the scenario.

Now- I'm not saying any of this is right. In fact, it is so very wrong-- that I want to scream also.

So- sit down with your MD-- pull your chair in front of the door, and don't move until you have made your point. You are paying the MD-- he works for you.

Don't yell and cuss out his staff. They are messengers. And they hold the power in their hands as to whether you need this medication, or you need a psychiatrist. (Personally, I like psychiatrists--they understand the brain chemistry so much better, and know that if any part is out of sync- it has to be rebalanced, so that pain CONTROL is maximized. ) The Anger is self-destructive, and is also part of the Grief. But it has to be redirected so that it works to your benefit.

One of the best methods of pain control is meditation. Weil, MD has a Body/Mind Connection Box that includes guided imagery and meditation. You can get it online or at Costco. It's great! We have to learn to relax every muscle and ligament in our bodies, and we have to learn to turn off our brains-- and shut down some of that chatter that is constantly reminding us how much we hurt.

Bargaining is part of the cycle of Grief. How many of you find that you spending your days frantically searching for a way to handle your sarcoidosis issues? Do you find yourself holding your body tight, clenching your jaw, are your shoulders connected directly to your ears-- your neck tensed down into what feels like your abdomen? Do you find yourself fearing what the future may hold? Are you scared that if you lose your job, your careers, your livelyhoods, your husband or wife, that your world will crumble?

If you aren't -- you're probably in Denial. However, to stay in this place of fear is to lose what we do have. We have today. We have that love and caring of our families and our kids. They want and need us. They are scared too, and that's ok. Especially if you will talk with them-- and let them know that even though you don't have a handle on your disease, that you still love them- and need them. They are feeling desperate also, because they too are powerless.

This can destroy you, or it can build you up in a place that you've never dreamed existed. Marla spoke about reframing and redetermining what is "normal." This is what begins Acceptance.

The Five Stages of Grief: Denial, Depression, Anger, Bargaining, and Acceptance are are issues we deal with. You will go from phase to phase, and in and out of each one- many times over. That's ok.

We have to give ourself the permission to work through these issues, and we have to give our permission to talk candidly with our MD's-- and let them know that we need them on our team. If you feel that your MD's and their staff have decided that you are abusing your pain meds, or abusing alcohol, or are depressed-- speak up!

This disease comes with pain. It takes time to get all the kinks worked out, and it may take Methadone or Oramorph or Fentanyl patches to control your pain. This doesn't mean you're a junkie. It means you have serious pain issues that IF you can get under control, you can be a more functional human being.

If you have chronic pain-- then it means you need chronic pain control-- CONSTANT pain control! If you take the medication only when you've gotten to such a place that you can't handle the pain-- you've waited way to long --and that is not how pain control works.

Long enough post for now-- I'll get the other articles on pain management together-- there is many in the ARCHIVES. Please, be kind to yourself and talk to your MD. You can handle this disease and the pain issues-- if you can be part of your team with the help and coaching of your MD.

Blessings,

Tracie

NS Co-owner/moderator