Tag Archives: pain

07

Today is Day 10 of 31 Days of Surviving Chronic Illness. You can catch up to Day 1 here.

At one point in my heath journey I realized I needed to:

  1. Stop and listen to what my body was trying to tell me.  I had been sick for quite a few years at this point but it didn't happen overnight.  I had been accumulating little quirks and symptoms for years until finally they all just combined into a mess of sickness and exhaustion.  So I decided that I needed to just shut out all the noise and trust that my body knew what to do next.  But I had to listen.
  2. Be kinder to my body.  It had worked hard over the years and I had pushed it way too far. The year before my physical body officially crapped out, I was so busy I didn't have time to do the most basic things. Like eat.  Or sleep. Or relax.  I was working full time, training and teaching Karate roughly 20 hours a week, plus church, plus family, plus, plus, plus..  Finally my body just said, "ENOUGH!"  It just couldn't take the abuse any more.

Because I wouldn't listen to all the signals my body had been giving me, it did an "override" and forced me to slow down.  All the way down.  But it took a while for my brain to catch up to what was going on.  Even in the middle of debilitating illness & physical pain, I was still trying to find a way to do all the things I used to do before I became sick.

But I just got sicker.  All the while my poor body was screaming out to me and I just wouldn't listen.

I am fortunate.  Much of my physical pain and illness has been reversing lately.  At least as long as I'm doing all the "right stuff".  I know some of you have illnesses that will be with you forever.  Maybe it's MS or Parkinson's or another condition.  First let me say, I'm sorry.  I can only imagine how discouraging and scary that must be.

Second, I want to say this: don't give up. Your body may be broken in places, but you're still here and your body is still talking to you. It still wants to be well and it is trying hard to get there, given the resources it has.

So let's help our bodies along as best we can.  Let's stop working against them.  Let's get quiet and listen to the cues they are constantly giving us. Let's give them the nourishment and rest they are asking for.  Will it be the miracle cure?  For some perhaps.  For others, no, not a miracle cure.  But it can give us all some calm in the storm, and there are days that's all we're looking for.  The strength to get through one more day.

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Today is Day 9 of 31 Day of Surviving Chronic Illness.  You can catch up on Day 1 here.

When dealing with chronic illness there are a lot of things you have no control over: inconsiderate medical staff, painful days, insurance wars, to name a few. So rather than fretting over the things we can't control, we need to formulate a game plan to begin taking charge of the things we do have a say in. We have spent the past week talking about the whole medical maze, doctors, etc..  We might go back and revisit that subject later on in the month but for now let's move on to another piece of the chronic illness puzzle: feeding your body.

If you are suffering from chronic pain or sickness your body is already broken.  Getting it back to a state of wellness (even if only for a season) may involve more than just finding the right doctor or taking the right medications.  I believe strongly that one of the best things we can do, whether you suffer from illness or not, is to take care of our physical body.  We have a duty to be a good steward over this one body we've been given.  Treating your body with care can be a preemptive strike and an avenue of healing if it's already suffering.

The human body is such an amazing creation.  It has been designed to protect and heal itself by extracting health from the foods we put into it.  It also will respond with life-sustaining protection when we treat it kindly with exercise and rest.

For the next several days we are going to explore some of the options you have when it comes to eating, supplementation, exercise and relaxation for your physical body.  Depending on your particular illness you may not be able to do everything, but everyone can do something.

I hope you have some ideas to share as well! Feel free to comment here or on the Facebook Page about what works for you or any questions you might have.

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photo by permission, unsplash.com
photo by permission, unsplash.com

Today is Day 8 of a 31 Days Of Surviving Chronic Illness.  You can catch up on Day 1 here.

Today is going to be a mashup of a few tips as well as some snags to watch out for while navigating through the medical maze.

Tests/Procedures/Medications ordered by your doctor

  • It is always a mix of hopefulness and fear when a doctor orders test, procedures or medications for you.  Especially when you are unfamiliar with what he has ordered.  We have a tendency to just blindly trust doctors but experience has taught me this is unwise. When your doctor orders a new test, procedure or medication do your research before going through with it.  A good doctor will not be offended if you tell him you want to think about it first or even get a 2nd opinion. Don't let them bully you! If it makes you uncomfortable or your "good sense" is telling you to wait, listen up.  Because although some drugs get in/out of your system quickly, some can take several months and could have devastating side effects to your already taxed system.

 Pharmacies

  • Just like doctors, there are good pharmacies and bad ones.  Ask your doctor or your doctor's nurse which pharmacies they find the most reliable.
  • Once you find a pharmacy you like stick with it.  It really helps to have pharmacy staff that recognize you.  Once they know you they are much more likely to do little favors for you, process your prescriptions faster, phone the doctor when problems arise, etc.
  • Even after you find a good pharmacy, watch them like a hawk.  Mixups in prescription medicine happen all the time.  I have been given both double and half of the medication prescribed by my doctor by a lax pharmacist.  When you pick up your prescriptions, before you leave, take them out of the bag and look for any dosage changes.  Check if there were any substitutions such as generic for brand name or change in delivery method or dosage changes your doctor forgot to tell you about.
  • You know all that paperwork they attach to your bag of pills?  Read it!  Always read the expected side effects and the possible drug interactions.  In a perfect world you could rely on the doctor and the pharmacist to convey this information but that just isn't reality.
  • Your local pharmacist can be a wealth of information so don't be afraid to ask questions.  A great pharmacist can tell you what to expect when starting a new prescription as well as warn you about little known interactions like taking thyroid meds with dairy (don't do it, the calcium suppresses thyroid uptake).
  • Some pharmacies offer their own prescription plans for a low annual fee.  One of my friends, who did not have medical insurance, was prescribed an expensive pill.  A pill she could not afford.  She was able to sign up for the pharmacy's private prescription plan and get the medication at an affordable price.  Pharmacies also have consultations for blood pressure, flu shots, diabetes management and other conditions.  Just ask your pharmacist for info on all the ways they can help you.

Labs

  • Again, there are good ones and bad ones.  Ask your doctor or nurse which labs they prefer.
  • Some are more expensive than others so it pays to do some shopping around.  Cheaper isn't always better, but cheaper isn't always bad either.
  • If you have a baby or toddler that needs to have labwork done, be sure to ask around for the best lab for pediatric needs. Some phlebotomists just have a talent for working with children and the nurses know who they are.

Insurance

  • I cannot stress how important it is to read the EOB's (Explanation of Benefits) that your insurance company sends you after you receive treatment or have labwork done.  The EOB explains how much of the cost your insurance company is going to cover.  But there are OFTEN mistakes, either from the doctor/labs end or the insurance company's end or both.  After my first knee surgery I received a $5,000 bill from the hospital saying that my insurance was only going to cover 20% of my surgical expenses even though the surgery had been pre-approved.  After I picked myself up off the floor, had a very heated conversation with a clueless insurance adjuster, had a 2nd conversation with a more helpful insurance adjuster, and lastly a conversation with my HR department, a HUGE problem in the contracts of my entire medical group (effecting thousands of people) was discovered. A couple days later my claim was resubmitted and was covered by insurance.
  • If you are unsure of the details of your insurance coverage first call the number on the back of your card.  If you are still confused talk to your HR department.  If you still need some help, talk to the insurance broker who helps your company purchase insurance.  The answers are out there, don't give up until all your questions are answered.
  • Just because your doctor orders the test doesn't mean it's covered by insurance.  Some tests are considered "non essential" by insurance companies so if you are low on funds, call the insurance company before you have a procedures or labwork done.  If your insurance isn't going to cover the cost, talk to you doctor to see if there is another test that IS covered. Or postpone it until you can find a way to pay for it.

So those are just a few of the tips & tricks I have, I'm sure some of you have a few as well. Feel free to share them here or on the Facebook page!

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Today I have the privilege of introducing you to my dear friend Beckie Miller.   Beckie and her husband Ken have together faced down illness of extended family members, best friends, their children and themselves.  In 2005 Ken was diagnosed with Parkinson's Disease and he chronicles his journey at the blog "Actually It IS Brain Surgery." Beckie is our Guest Writer today, with the unique perspective of the care-giver. I just know you're going to love her words as much as I do.

If I were to list for you all the people in our life who have faced chronic or life-threatening illness you’d probably start running in the opposite direction.  Suffice it to say, we know a few …. including ourselves.  The one positive about this is, when meeting people for the first time who are facing a medical diagnosis, our personal story and experience give us some credibility.

There’s nothing more rewarding than being able to pass along knowledge that might help someone on their journey.  Through Ken’s blog www.ActuallyItIsBrainSurgery.blogspot.com we have the opportunity to connect with people from around the world.  We find ourselves repeatedly talking about certain issues that I refer to as my “soapboxes” ….. one of them being advocacy.

ADVOCATE FOR YOUR PATIENT

It’s pretty easy to find yourself overwhelmed in the medical process.  There’s not just physical stuff going on, but the emotional side gets kicked around pretty well too.  That’s why, as a patient, having an advocate is so very important.  NO ONE should EVER be in hospital or attending doctor appointments by themselves -- there's just too much room for error in the process ... especially when the patient is struggling physically or mentally, or is in pain. I’d say it’s next to impossible for the patient to advocate for themselves and a second 'ear' is always good when interpreting what the Doctors or other medical professionals might share with you. We often take my sister-in-law along with us to Ken’s neuro appointments.  Many times she has been the ‘voice of reason’ for us, both during the appointment by offering pointed questions and later, as we attempted to piece together all the new information that had been offered.

We live in amazing times and most likely the first thing most of us do when handed a medical diagnosis is to RUN to Google, so it may seem trite to remind you of some basics.  But utilizing the ‘basics’ will eventually give you a strong foundation for understanding and analyzing everything that may come your way on this journey.

So……          

Join an online support group - these can provide a broad over-view (you will need to use the grocery store method: take what you need and leave the rest)

Join a local support group -- these people will have invaluable information what type of support is available locally. They've ‘been there, done that’

Ask for reading suggestions -- and don’t worry if it all seems like gibberish, it will eventually begin to make sense.  It’s a lot like learning a new language.

ADVOCATE FOR YOURSELF

The patient in your life gets a lot of attention …. as well they should.  But if you find yourself in the position of care-taking or advocating, you can’t forget yourself. There have been plenty of articles documenting stories of caretakers who actually pass before their patient.  It’s very easy to focus, focus, focus on taking care of everyone else but you. Guess how I know this? 

I’m still learning to give myself permission to address my physical and emotional needs.  My sister has been such a good example to me in this.  Her husband has Frontal Temporal Disease and most of their life together, as they knew it, has disintegrated.  She has found ways to nurture her heart and her body that allow her to gather her strength.  She gets therapeutic massages for stress, she walks to and from work through all four seasons, she bought a kayak and spends quiet, restful moments on the lake, she surrounds herself with people who are encouragers in word and deed, and when she’s having a really hard day she makes Apple Dumplings.  She’s practically world-renowned for those things!  She takes care of herself, because no one else can.  

I’m learning from her. I also try to remind myself not to hold my breath figuratively.  I’m trying not to put ‘life’ on hold as we walk out this process. It’s a really easy thing to do -- put your life on hold.  Then you look back and realize you haven’t enjoyed the little, everyday moments that make up a life.  I want to fully appreciate those moments -- reading out-loud from my mother-in-law’s journal as we complete yet another holiday round-trip drive, having the patience and time to let my grandkids ‘help’ prepare meals and together, work on a puzzle …. for the 10th time that day J, and getting lost in the eyes of our 3-week-old newest grandgirl, knowing therein lies an ocean of love.

Facing down illness is a tough road, full of twists and turns with always challenging and ever changing terrain.  The goal is to travel as gracefully as possible.  Together, we can help each other do that.  

Carey again: Yesterday we talked about looking at Alternatives in health care. I would like to point out that Ken underwent a surgical procedure called DBS (Deep Brain Stimulation) to help manage his tremors caused by Parkinson's Disease. While not experimental, DBS is not exactly "common" and Ken & Beckie had to do a fair bit of research to find out what it was and whether it would be a good fit for Ken.  Ken & Beckie talk about their journey with DBS on his blog and I'm certain they will be happy to answer any questions you might have about their experience with DBS and/or Parkinson's Disease.  
PS:  If you're new to our series, today is Day 7 of 31 Days Of Surviving Chronic Illness.  You can catch up on Day 1 here.

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photo by permission, unsplash.com
photo by permission, unsplash.com

Today is Day 6 in 31 Days Of Surviving Chronic Illness. You can catch up to Day 1 here.

Complementary & Alternative Medicine (CAM)

Yesterday we took a look at the different types of traditional clinicians.  Today we are going to touch on a few alternative options in the medical world.   According to Mayo Clinic , "Doctors are embracing CAM therapies, too, often combining them with mainstream medical therapies — spawning the new term 'integrative medicine.'" These therapists and treatment facilities are not always covered by traditional insurance but  their ability to think outside of the modern western medicine box makes them worth taking a 2nd look at:

  • Spa/Massage Therapists- It may sound a little self-indulgent but a reputable, medically-minded spa therapist can offer so many alternative treatments.  I am not really a spa-kinda-girl however, I have found that regular massages with a qualified, highly trained massage therapist tremendously help with my pain management, particularly in my large joints like shoulder and hip.  Here are a few my local medical-spa offers:

  • Reflexology
  • Swedish Massage
  • Medical Massage
  • Thai Massage
  • Stretch/Flexibility Therapy
  • Hydro Therapy
  • Thalassotherapy
  • Light Therapy
  • Heat Therapy
  • Raindrop  Spinal Therapy
  • Naturopath (ND)- I’m all about doing things naturally, if I can. I feel that less chemicals is a wise approach to my already stressed out body. A Naturopath can offer alternatives in treatment, especially when it comes to prescription medications.  A Naturopath may also recommend tests that are not commonly ordered by a traditional MD. Naturopaths often focus on diet and supplementation and some offer shots or infusions. My mother saw a Naturopath when she was trying to get pregnant with my little brother.  For 10 years she tried to get pregnant, she went to see the Naturopath and 12 months later my little brother was born.  You be the judge. (side-note: some DO's practice in the same way a Naturopath does so if your insurance is balking at covering the bill from a Naturopath, you may have better luck with a qualified DO.)

  • Acupressure/Acupuncture- Some people swear by acupressure/acupuncture. I don’t quite understand it all, but Chinese physicians have been using it for thousands of years so it might be worth a try if you suffer from chronic pain.

  • Certified Health Coach- A certified Health Coach is like a Life Coach, but for your health care needs. " A Health Coach is a wellness authority and supportive mentor who motivates individuals to cultivate positive health choices. Health Coaches educate and support clients to achieve their health goals through lifestyle and behavior adjustments." If you need help staying on track with your health goals or research, a certified health coach can help.

  • Homeopathy- I like to think of homeopathics as wives-tales-proven-right. God provided so much for us in the way of plants and herbs that offer tried and true help with physical ailments and that is how most of our ancestors treated sickness.  It doesn't have to be weird or religious, it's simply a matter of taking a concentrated dose of a natural plant or other natural substance, usually under the tongue.  They are as scientific as the prescriptions from your local pharmacy, in fact some of the very same substances are used for both.  Over the course of my life I have used homeopathics to treat a variety of ailments such as cold sores, impetigo, bruising, allergies and more.  Some work better than others and not all homepathics work for everyone.  The great thing about homeopathics is they are readily available at your local health food store and don't cost more than $10-$15 to try.

You can read about more Complementary/Alternative therapies here. If traditional forms of treatment don't seem to be helping you, pick a couple alternative therapies and see if they can bring you some relief.  Please keep in mind that some alternative practices incorporate religious or spiritual elements so be sure to thoroughly research before beginning any practice that may be in conflict with your own religious beliefs.  I am a Christian and therefore there are some alternative practices that I am not comfortable with (ie: Reikki, certain forms of meditation, etc.).  I simply avoid those practices that I feel contradict my faith.

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skeleton

We are on Day 4 of 31 Days of Surviving Chronic Illness; you can catch up on Day 1 here.

You’re sick, you go to the doctor, he gives you medication or treatment, you get better.  And live happily ever after. For some patients and certain conditions it really does  happen that way. If only it were only that simple for everyone.

If you have been seeing a doctor (or multiple doctors) for your illness and have experienced little to no improvement it’s time to take an unemotional, logical look at your situation.  

In my opinion, there are only 2 solutions to your problem:

  • Your current physician or medical professional has the answer or is willing to keep moving forward until the answer is found.

  • You need to find a different doctor (or multiple doctors) who has the answer or is willing to keep moving forward until the answer is found.

Let’s have an honest talk about doctors and medical professionals in general.  During my 12+ years of dealing with the medical community, struggling to find wellness, I've run across 3 types of doctors: The Good, The Bad and The Indifferent.

Let’s start with The Indifferent Doctor.  The Indifferent Doctor may not be a bad doctor, in general.  They may be great at diagnosing strep throat, pneumonia or high blood pressure.  The Indifferent Doctor might have a lot of experience in general family medicine, but not much outside of that.  The Indifferent Doctor may not have more than 5-8 minutes to spend with you because of over-booking.  The Indifferent Doctor may be willing to run a few common tests but if they all come back within the normal range, they are not willing to explore further. It’s not that they are an unfeeling or uncompassionate, but their lack of knowledge or experience hinders them from moving forward with your care.  

And sometimes it isn't their fault at all.  The Indifferent Doctor may have tests or treatments in mind but is hindered by the medical group he belongs to or a controlling Board of Directors and is not able to or willing to “fight the system” for you. Sometimes The Indifferent Doctor is as frustrated with the system as you are, and they have given up.

Now let’s talk about The Bad Doctor. Unfortunately, having an interest in healing people is not a requirement for becoming a physician.  In fact, common sense is not required either.  All you need to graduate from medical school and go on to become a doctor is the ability to go to school for a really long time.  I DO have a ton of respect for the arduous process of becoming a physician; it’s a grueling, expensive process. Doctors are overworked and often in debt to the tune of $200,000 by the time they finally finish their residency and begin making a real paycheck.

But that does not give them the right to behave like they are gods.  And that is exactly  how The Bad Doctor behaves.  The Bad Doctor will speak down to you, as if you couldn't possibly be intelligent enough to understand what he/she is talking about.  The Bad Doctor will act annoyed when you ask questions or challenge their opinion on a suggested treatment or prescription and will not order tests or treatments based on your research or requests.

The Bad Doctor will make it clear to you that you are wasting his time.  It is not unusual for a Bad Doctor to yell at patients, slam doors or verbally insult the very people they have been hired to help.  A Bad Doctor will not offer support, sympathy or hope.  They won’t look you in the eye while speaking to you, shake your hand and otherwise show no humanity.  Rather than admit they don’t know the answer or refer you to another physician who might, a Bad Doctor will tell you to “just learn to live with it.” Yes, I had a doctor tell me that.  Bad Doctor!

Finally, let’s talk about The Good Doctor!  The Good Doctors are not easy to find, but they are out there.  The Good Doctor makes this whole journey through chronic illness bearable.

Because they recognize that your involvement is critical to achieve lasting health, The Good Doctor not only allows, but welcomes your questions.  The Good Doctor will take as much time as necessary during your office visit and always finishes a visit with “Do you have any questions for me?”.  When you leave an appointment with a Good Doctor you feel listened to.

The Good Doctor will listen to your opinions and although may disagree with you, will do it in such a way that you still feel respected.  They will look you in the eye when speaking to you, shake your hand and make you feel like a person, not a check mark on their to-do-list.

They don’t pretend to know it all and The Good Doctor is not afraid to tell you when they have run out of ideas.  They are always willing to send you to a specialist that might have more knowledge about your condition.  The Good Doctor doesn't give up on you. 

You deserve the best treatment that can be found. Don't waste your time and money on any physician who cannot or will not show an active interest in your journey back to wellness.  Fire The Bad Doctor, come to grips with the limitations of The Indifferent Doctor and go find yourself a Good Doctor!

 

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photo used by permission of unsplash.com

We are on Day 3 of a series called 31 Days of Surviving Chronic Illness. You can start Day 1 here.

In this chronic illness equation we all have one known common denominator: something is making us sick.  But after that things can get confusing. Frustratingly confusing.

Now, I’m going to say something strange, possibly even offensive and if it applies to you please give me a chance to explain it further before you stop reading and send me hate mail.  What I need to say is this: if you went to the doctor and the doctor ran some tests that came back positive with a clear diagnosis... you’re one step ahead of the rest of us.

Please don’t shoot me for saying that!  Hear me out.  I’m NOT saying that you are fortunate to have an illness, maybe even a terrifying illness like leukemia or MS, I’m not trying to minimize your pain or suffering. Illness is a mental and physical terrorist to everyone.  Everyone.  

What I mean is this: you have the one thing the rest of us bang our heads against the wall trying to come up with: you have a diagnosis.  You know the enemy you are fighting against.  Your doctor probably gave you a pamphlet that told you more about your disease and maybe even gave you an overview of what your treatment would look like for the next few months or years.  And after dealing with the shock of hearing you have “X” you probably got on the internet and searched for more information on your particular illness, learning about the symptoms, the progression, the end result.  You might have even connected with other people, in a support group or on the internet, who are suffering from the same affliction and found some comfort in knowing you aren’t alone in this pain.  When loved ones ask you, “What’s wrong, what did the doctor say?” you can say “I have ‘X,” and they will nod their heads in sympathy because they know exactly what “X” is.

Not everyone shares that experience.

For the rest of us, a diagnosis is elusive.  We have a laundry list of symptoms that add up to nothing at all.  Our doctors run a slough of tests only to have them ALL come back “normal”.  But we don’t feel “normal”.  We are physically and mentally exhausted and  maybe even in excruciating  pain.  We feel like we are slowly, painfully losing a war against an unknown invader.  And when the doctor runs out of ideas, we run out of hope.

If that’s where you are at, if your doctor has run out of ideas, I want you to know that your journey doesn't end there.  There IS a diagnosis for you, too.  But you might have to have to fight the system to get it.  You might have to fire your doctor and find one that is invested in your journey back to wellness. You might have to think outside of the box and try some tests or treatments that you've never heard of.  You might have to take vitamins (gasp!).

For the rest of this week I am going to be sharing about doctors, tests and managing the medical maze. I’m going to throw a lot of ideas out there, they may not all apply to you, but hopefully you will find something that sets you in the right direction towards your personal wellness.

Stay tuned!