Updates and learning time management

So I haven’t blogged in a while and I apologize profusely!!!! Time management is something we all could use more practice with especially when you are working a full time job, managing your household and your health plus numerous other projects!!! So here is the lowdown on what has happened these last few weeks!!

I “graduated” from my training class at work and now I am adjusting to my regular schedule which is over night. My body is wants to adjust but things that need to happen must be accomplished during the day when stores and doctor’s offices are opened. It is sad that there are a lot of people that work over night however the rest of the world refuses to acknowledge that schedule. Sometimes I wonder if we work too hard and too much just to keep up!

My pain has increased however I do believe this is a direct correlation to getting back into the working field and dealing with the adjustments. I refuse, however to give up especially when my family needs this extra income! I am sure at some point my body will adjust, like it has before, and the pain will level out to a much more tolerable level. I also feel guilty that my home is not kept how it should be however again this an adjustment that we will overcome!

No matter what ability or disability that you may have or not have, does not mean that you are incapable of following your dreams and doing what is necessary to provide for your family, whether it be financially, spiritually, emotionally, physically, and psychologically. Those things will always be necessary for the family unit to thrive and you are always an essential part of that unit.

Putting yourself on a detailed schedule can help you in many ways with time management however you have to be dedicated. It is a learning curve I know and one that I have always struggled with, however communication with yourself and your family is always the best way to develop your time management skills. I will be researching better ways to manage the time I spend and making it productive without giving up on the things that mean the most to my family and myself!

I love blogging and it is a release for me to vent my frustrations and achievements. Plus it is a way for others who may be in the same situation or one like mine to know there are other people out there fighting the same battles and achieving success no matter what odds may be stacked against them!

I hope that all my readers will understand that I am dedicated to this blog and to informing the world about Spina Bifida, RSD/CRPS, pain management, and other issues as the blog continues to grow. However the learning curve may take me away from this from time to time but I refuse to give up on what I am passionate about, this blog being one.

Know that like everyone else, I am and will continue to be, a work in progress. I will continue to grow as an individual, a wife, a mother, a sister, a daughter, a friend, and a blogger amongst other things that define me! I hope that you all understand and know that I feel I have been called to this mission of informing the world that no matter what your odds may be that you are always needed and are important to others!!! I will not stop till I know that I have made a difference in this world no matter how big or small it may be!!!

That being said……shuffle on my friends!!!!!

Chronic Pain: Intro to building a Team of Doctors

Chronic Pain: Introduction to building a Team of Doctors for PM and its Symptoms

Chronic pain is one of the most difficult medical diagnosis to treat because it comes with a list of its own side effects. So many times pain management doctors just want to treat the pain only without recognizing the side effects, such as depression, that exacerbate the pain. If the doctor does not look at the total overall effect chronic pain has on the individual, more than likely the patient will not receive the best medical care to treat CP and the side effects. Patients need to be honest with their PM doctors about their CP and all the symptoms they are having, regardless if you believe it is related or not to your CP diagnosis. Other symptoms you need to speak with your doctor about include sleeping problems, how you feel during flares and lower pain days, any mood problems, and (but not limited to) how you socialize with others.

There are so many ways to control your chronic pain, including medications, meditation, acupuncture, chiropractic treatments, biofeedback, psychology, psychiatry, IV therapy, and even surgical intervention. Pain Management doctors need to look at the whole patient and discuss every avenue of treatments available for and tailored to the patient.

Medications have come more advanced, more effective, and there are many different options available then there were even 30 years ago. The majority of pain management doctors are anesthesiologist who specialized in pain management. Their knowledge of pharmacology is vast, however every doctor has their particular go to medications that they like to use. Sometimes this is an advantage to the patient, because the doctor has seen many patients respond positively to the medication. However this can also be a huge disadvantage because every patient is different in many ways, including their pain diagnosis and location, medical history, family history, and how their pain effects them physically, psychologically, socially, and emotionally.

Working with a team of doctors that communicate by sharing information and treatment options can benefit the patient and their overall health. Many times medications such as those classified for neuropathic pain possibly can be more effective if combined with an antidepressant. This where a team of doctors can benefit the patient by having those doctors who’s pharmacology information is greater in a certain classification can work with the other team doctors to determine what combination will work best for the patient. Not only will this help treat the pain, it also can help to treat the side effects of chronic pain, such as depression and insomnia. Many side effects can increase pain if not treated correctly. So adding an antidepressant/antianxiety/sleep medications can help the patient relax, get relief, and a restful night’s sleep. This in return benefits the patient, their body, and overall health.

When interviewing a pain management doctor (or any doctor), remember a couple of things:

1. What is their educational background? EX: Where did they go to medical school? Where did they do their fellowship? What is their specialty?
2. What is their professional background? EX: What clinics/hospitals have they worked for? Do they have any complaints against them?
3. How do they interact with you? EX: Do they listen well? Do they have a good rapport? Do you feel comfortable with them?
4. Are they willing to work with other doctors? EX: Your GP, psychologist, psychiatrist, surgeon?
5. Do they look at your overall health? EX: Your medical and family history? Other symptoms such as insomnia or depression?
6. Are they too quick to write you a prescription? EX: “All my patients take (insert medication here) and it really works for them.” And hands you that script.
7. Are they willing to research alternative treatments if conventional ones do not work? EX: If nerve blocks stop working, would they look into IV therapies, ketamine treatments, or even clinical trials?
8. If they can’t help you in the future, will they write you a referral to someone whom can? EX: If everything that they have tried doesn’t work, will they help you search for someone that may be able to help? Or, are they willing to add another doctor (possibly in a different specialty) to the team by referring you to see them?

Remember, you control your appointments. You should be able to ask questions, voice concerns and be honest about your pain and side effects. Also, you chose to hire your doctors, if they do not have your best interest in mind, you can fire them! You want to choose a doctor that will work with you and a team of doctors to provide the best treatment plan for your chronic pain and the side effects!

Shuffle on my friends!!!

 

 

Pain Management – Part 3: Finding strength through the pain

Having a husband that is a Marine has taught me many things. It has taught me how to communicate efficiently when distance separates us, how to find strength even in the darkest of times, and how to always have a backup plan when something happens. One of the greatest quotes I have learned from the Marine Corp is this: “Pain is a sign of weakness leaving the body!”

I truly believe this statement, especially after all I have been through. No matter what type of pain you may be in, such as physical, emotional, spiritual, mental, or psychological; it is then that you realize your strength and give more to push even harder. No one, except maybe others who are in pain, can understand what you deal with on a day to day basis. Your family and friends, no matter how close you are with them, cannot fathom the internal struggles you face every day to perform even the most simple task. Pain, no matter how well it may be treated, will never go away completely. It doesn’t matter how much we wish it away or even pray it away, there will always be a part of us that still feels the pain. It could still be a full blown pain or a scar left behind from the days, that all we have ever thought about, was getting rid of this horrible pain.

Many of us remember the days before the chronic pain started and what we used to be able to accomplish. With the onset of chronic pain, it started to work in our body physically but also psychologically and emotionally. We tend to find ourselves in a tunnel of complete darkness as we reminisce of abilities we used to possess. Unfortunately, we no longer have the ability to continue some, if not all, of our favorite activities. We also had goals and aspirations for our life and for what we wanted to accomplish. However, once the chronic pain set in our list because shorter or even worse, completely thrown away.

Through all this anguish and unbearable pain, we must look inside ourselves to find the strength to push through and find the light at the end of the tunnel. We must continue to transform our brains filled with the word “can’t” to I can and will to the best of my abilities. When you start transforming your mind, heart, and soul to push through, even the most difficult tasks, suddenly you will find what you can accomplish. This in turn starts to transform those negative thoughts into positive uplifting thoughts and because of that you will find your inner strength that you may have been missing.

I believe that even in our darkness times, if we reach down into ourselves, we will become stronger as we shed our weaknesses. Each person handles pain differently and our strength is based not on anything physical but on ourselves and what is in our hearts. Through the ages, people became stronger when they were at the most broken time in their lives.

I have always turned to The Bible when dealing with my pain and all by diagnosis. I have found so many verses that I would love to share with you, that has helped me get through even the toughest times.

Psalms 28:7 – The Lord is my strength and my shield, in whom my heart trusted and found help….

Isaiah 40:29 – He gives strength to the fainting; for the weak He makes vigor abound. (31) They that hope in the Lord will renew their strength, they will soar as with eagles’ wings; They will run and not grow weary, walk and not grow faint.

1 Corinthians 16:13 – Be on your guard, stand firm in the faith, be courageous, be strong.

2 Corinthians 12:10 – Therefore, I am content with weaknesses, insults, hardships, persecutions, and constraints, for the sake of Christ; for when I am weak, then I am strong.

2 Timothy 4:17 – But the Lord stood by me and gave me strength…

Through everything I have been through, my faith has always been as constant as my positive attitude. Those two things will take you far in this world. I have seen it in some people that many doctors have set the odds against them. I have also lived it, for I know that even on my weakest days, I am still strong!  As the pain builds up or becomes more intense, the weaknesses melt away, leaving me standing stronger than I was the day before!!!

Shuffle on my friends!!!!

Pain Management – Part 2: My experience with PM doctors

After dealing with chronic pain (CP) for over 10 years, I have seen more pain management (PM) doctors than I would like to admit. Not only do I deal with pain related to SB, I also have RSD/CRPS. It seems that every time I find one that I love, I either move, they move, or other circumstances come up and they cannot continue with my case. It has been a difficult journey to find the right doctor, the right care, and the right treatments. I have found that there are a couple different types of PM doctors:

Type 1: Those who love what they do, actually care for their patients, and want to treat them the best way possible. Sometimes that means sending them to someone more qualified when they no longer can provide adequate care for the patient.

Type 2: Those who think a certain prescription can solve all the patient’s pain issues, no matter what the side effects may be, even if they have a negative effect on the patient.

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Type 1 PM doctors are the ones that are a perfect fit for the patient. Your personalities fit, they listen to you and take into consideration all of your symptoms, ideas, and concerns. They go over each recommendation they have to treat your pain thoroughly and address every concern that you present. They understand chronic pain and care for each and every patient and their needs independently. These doctors do not treat you like a number and do not get you in and out so fast just to see how many patients they can get through during their office hours. If their treatments do not work, they are willing to find you other doctors who can help with the treatment, either by referral or by consulting with them themselves.

I personally have found only two doctors in 10 years that have fit into this category. In the past 10 years I have lived in three different states and five different cities. I hate loosing my PM doctors because then it is basically starting over from day one when you have to get a new doctor. The last great PM doctor I had was always on the cutting edge of the medical advancements in the field of pain management. It was amazing to have a doctor that knew what he was talking about, had practiced for many years with patients with unbearable chronic pain, and our personalities clicked. We were always on the same page. His MA (medical assistant) was even amazing. Always easy to get a hold of and if there was a problem, she would always fit me into the schedule. There maybe was one time that we were not and after a great deal of conversation, we came to a mutual agreement. Unfortunately, for reasons I have not yet had the privilege to know, he resigned. This upset me tremendously because we were just getting to the point where we were ahead of the pain and almost little to no break through pain.

Then there is the Type 2 PM doctors. These are the doctors that want to hand you a prescription that they guarantee will work. Usually it is based on how well it has worked on all of the other patients. They tend not to consider each patient is different no matter if their diagnosis is the same. They also can be the type that swears by a certain injection or procedure, even if you explain that those procedures are not exactly helping, they want to continue to perform them because at some point they say it will work. Their staff is usually not helpful and they tend to want to just get you in and out as fast as possible.

This was the last PM doctor I had and ended up firing! He wanted to treat me with a very strong narcotic that is incredibly addictive and had major side effects. One of them actually ended me in the hospital for a week!!! I actually called and told him that I needed to titrate myself down to lower doses so I could come off the medication. He totally disagreed and was really not wanting to work with me on the situation nor did he want to come up with any alternatives to help my chronic pain. At that point I knew this was not the doctor for me! So with the help of my GP and pharmacist, I was able to get off the medication safely and the negative side effects went away!!! I also was able to fire him (which I LOVED!) and my GP and I decided that he would take care of my chronic pain.

Finding the right doctor for your CP is important. They have to be willing to work with you and listen to all of your past history and concerns. You have to feel comfortable with the doctor so that you can be opened and honest with him/her, so that you get the best medical care that you deserve! the best thing to do when finding the right PM doctor is to interview them at the first appointment, before signing any contracts. Remember, only you know how bad your pain is and what you can tolerate. The last thing you need is a Type 2 doctor that won’t work with you and that you are uncomfortable with, no matter the reason!

Pain Management: Part 1 – Dealing with break through pain & the ER

When you have a chronic medical condition sometimes you have chronic pain that is not easy to handle without medications. Due to strict laws through out the U.S., most of the time your general practitioner cannot provide you with the medication that you need, so they refer you to a pain management doctor. Most of the time, these doctors are trained in anesthesiologist who have concentrated their studies in pain management.

I have had the pleasure of dealing with PM doctors over about the last 10 or so years. Some of them were amazing and knew what they were doing, how to treat the pain appropriately and understood how having chronic pain affects your daily activities and your life. There have been many evenings I have been in so much pain, that medications did not touch, that unfortunately I ended up in the ER.

Treatments in the ER range the same way depending on the doctor. You could have amazing care or you can have a doctor tell you they cannot treat you. Break through pain happens! If you are in a contract with a pain management doctor, those contracts apply to prescriptions, meaning you cannot have another doctor write you a prescription for pain management (ex: narcotics, muscle relaxers, ect). However, this contract does not apply to break through pain that your medications are not controlling, which then leads you to the ER. They can treat you for that particular episode, but not write a prescription.

My recommendation for those who have a severe break through of pain that is not able to be controlled by your regular medication, to call your PM doctor before heading to the ER. Always maintain a honest, opened relationship with your PM, so that there is trust between the doctor and patient. This also helps you when you go to the ER, because your doctor can always call ahead and let them know the best way to treat your pain during your visit. Also, remember a follow up with your PM is very necessary.

I can tell you that certain ER doctors will not treat the break through pain, either because they do not understand chronic pain or because they absolutely refuse. Due to the influx of people seeking out pain medications some doctors are very hesitant to treat these conditions in the ER. Many people whom have chronic pain are viewed as drug seekers to the medical communities. It is very important not to hop around to different ERs to treat your break through pain. This will alert every hospital in your area, which in return they will see you in a negative light.

Also when or if you have to go to the ER, have your medical history typed or written out to give to the triage nurse. This way they are aware of every condition you have been diagnosed with, your surgical information, your allergies, and list of all the physicians that are currently treating you for all your health conditions. (See my post on traveling with medical conditions.) This information can help the medical staff at the ER treat you efficiently and with the care and consideration you deserve!!!

Understand that every condition and person will be treated differently, due to medical background and history. Also note that the ERs first step is triage to access you and the your needs for treatment. Depending on the ER, you may have to wait longer than others depending on their conditions and the level of medical treatment they require.

However if you feel that you have not been treated adequately or have any other issues, you have the right to a patient advocate. This may help your process and provide constructive feedback for the hospital when dealing with patients who have chronic pain.

I hope this gives you some insight and helps your battle with chronic pain. Please note that all states are different and have to follow policies and procedures laid out by the hospital and state laws. Look for future posts regarding pain management!

Shuffle on my friends!!!!

What is pain???

What is pain?

• the physical feeling caused by disease, injury, or something that hurts the body.
• mental or emotional suffering: sadness caused by some emotional or mental problem
• someone or something that causes trouble or makes you feel annoyed or angry

Many of us have felt pain at some point or another, whether it be physical, emotional, mental, psychological or spiritual. It may be very hard to know if someone is in pain because many of us hide it so well. Many of us don’t want others to see us in pain, for many reasons. Some of us and even people in our circles, may believe pain is a weakness, that maybe we are faking it, or we ourselves are not at the point in our lives to acknowledge that we have chronic pain. The problem with pain, any type, is that is hard to measure it accurately. This is because everyone handles pain differently, our bodies are different, and how we tolerate it is different. So my pain may be a 5, however that 5 I feel might send someone else to the emergency room.

I have been in pain now for 10+ years. I was born with Spina Bifida but it didn’t really affect me until I was 23 years old. I was a senior in college working on my Criminal Justice degree so I could work in Law Enforcement. After a tethered cord release lead to a complication of a spinal fluid leak, 10 surgeries later, I was finally able to leave the hospital. However, being in a hospital bed for long periods of time lead me to develop atrophy and I had to work hard with PT to walk and do things normally again. All of these surgeries lead to my diagnosis of CRPS/RSD and I also have anxiety and chronic migraines. I can totally relate to others who have chronic pain. I also have had a spectrum of pain, not only physical, but a range from emotional to spiritual and everything that I have mentioned above.

But it’s how you handle your pain and what you do with it that really matters. You can set around and go into a major depression or you can learn to help people in a similar situation. What do you choose to do?

People have asked me what have I done to help my chronic pain. I have turned to doctors, medications and even surgeries. However, that doesn’t always make you better. So what can we do about it? I have done so many things, some worked and others didn’t even come close. However over the years there are two things that remained constant for me:

1. My faith in God.
2. My determination to face things head on and prove doctors wrong!

So I have turned, where I always turned, to see what The Bible has said about pain….

Jeremiah said: “Why is my pain continuous, my wound incurable, refusing to be healed?” (15:18)

In John 16:22 Jesus says, “So you also are now in anguish but I will see you again and your hearts will rejoice and no one will take your joy away from you.”

The Lord does not give us pain intentionally. Who would want their children in pain? And because He made us in His image, we are all His children. The Lord knows one day we will unite with Him and be pain free!!!!

Even Job spoke about what happens to the Believers when they are in pain. For he wrote: “Then I should still have consolation and could exult through unremitting pain, because I have not transgressed the commands of the Holy One.” (6:10)

I truly believe that one day, all this pain, sadness, hurt, and sometimes loneliness, will be no more and I will be able to dance again with the Lord!

Darrell Evans wrote an amazing song titled “Trading My Sorrows”. This song really resonates so well for me and for others who may be in pain, have sorrow, or are sick. I encourage you to listen to the song when the pain has taken over and you feel like you have nowhere to turn. This song is upbeat with amazing lyrics and can change your mood.

The most important message you can hear in all of this is:

You, my dear friend, are not alone and you always have the Lord waiting to listen to you. You just need to open the line of communication!!!

I will leave you with Darrell Evans lyrics to “Trading My Sorrows”:

I’m trading my sorrow, I’m trading my shame

I’m laying them down for the joy of the Lord

I’m trading my sickness, I’m trading my pain

I’m laying them down for the joy of the Lord

 [Chorus}

And we say yes Lord yes Lord yes yes Lord

Yes Lord yes Lord yes yes Lord

Yes Lord yes Lord yes yes Lord Amen

I’m pressed but not crushed, Persecuted not abandoned

Struck down but not destroyed,

I’m bless beyond the curse for His promise will endure

And His joy’s gonna be my strength

Though the sorrow may last for the night

His joy comes with the morning

Lord Jesus may you watch over all of us that are in pain everyday, no matter what kind of pain it may be. Pick us up when we fall, carry us when we can’t walk and shine your light when we cannot see the road ahead. Send the Holy Spirit to calm us and your love to warm us. Your love never fails! Give us the strength to make it through the pain, just as you Lord did when you were beaten, nailed to the cross with thorns placed on your head as you Lord died for our sins. May one day we meet you and become pain free as we dance and sing with joy for You! In your name Jesus, we pray. Amen!

The Next Phase

I have not worked on my blog as much as I have hoped to over the last year, but times have changed and I believe the voices of adults with Spina Bifida need to be heard. Over the next couple months I will be giving you a look into my life with Spina Bifida, chronic pain, and just the average shuffle of life.

Please understand that I am a woman who just happens to have a birth defect and a chronic pain disorder, however that is not what defines me! I am a wife, mother, daughter, sister, cousin, neice, daughter-in-law, and friend. I have been to college, worked for major corporations and small business. I have volunteered as a youth minister and music minister in my church. I have done and accomplished many things in 33 years and I still have challenges facing me ahead.

My journey is mine. It is what God has laid out before me and I have had the free will to choose my path. Though it may not be a path that those around me would have taken, it is my path. I am not “special” in any way. I’m not wanting to be an inspiration.  I am wanting what is best for my family and I. I want to make a path for younger people with these diagnosis that is easier for them to walk. I want to cut down all the huge bushes and obstacles in our way, so they will be recognized and understood by the medical community and by their own family and friends. I choose to do this by sharing my medical issues and daily life of shuffling everything but maintaining a balance. Hopefully this will lay down a solid foundation for those behind me.

I hope that by sharing my life, I may enter into your life and make you laugh, learn new information, understand and be open to other ways of life. And maybe figure out how to shuffle through everything that lies before you no matter how difficult the challenges may be that lie ahead.

Remember this great quote from Wayne Gretzky:
“You miss 100% of the shots you don’t take!”