Will I Still Have Faith if I Don't Get Well?

     Although I was told how long treatment would take, and even though I understood that recovery was a journey full of set backs, and times of regression, and despite learning how my disease could affect me differently every day, I still remained blindly hopeful that I would be the exception to all the rules.  Probably my expectations of a quick and easy recovery were grounded in how quickly I improved in the beginning.  I figured that even though bad days would happen, I would continue to get well at a steady pace.

     Surprise! I am definitely not an exception to the rules!

     As soon as my recovery plateaued my doctor changed my treatment regimine.  Feeling a little better doesn't mean I'm better.  It means those darn germs are good at hiding, buried deep in my body tissue, waiting for me to stop bombarding them with medicine.  Time to out-ninja them and change my arsenal.   The good news is, we are killing them again!  The bad news is, I am spending my summer stuck at home.

     I spent all winter being ok with being housebound.  I looked forward to the summer and hoped to be well enough to at least enjoy sitting on the beach.  I wasn't expecting to not only regress, but regress to the point that my seizure activity would return.  A month ago I was celebrating being able to shop without a motor cart, now a trip to the store is overwhelming.  I am watching the majority of my friends on Facebook enjoying the beautiful Maine outdoors trying not to be jealous.

     I spent a few weeks trying to force myself to do the things I felt I should be able to do.  Of course, my body didn't cooperate and that caused me to be frustrated and a tad depressed.  I finally accepted the fact that this summer wasn't going to be what I had hoped and I let go of expectations that were impossible to meet.  I then began to contemplate what God wanted to teach me.

     The first thing I did was make the decision to spend my time in bed growing closer to God.  I've been listening to sermons online, reading online Bible studies and praying.  The first realization I had was that my desire to get well was largely due to my desire to control my life again.  I wanted to work and be in charge of my income.  I am emotionally tired from daily having to pray and have faith that my needs would be met.  Scott and I have often joked about God's sense of humor, waiting until the last possible second to meet our need.  I was reminded, through my studies, that God does this because He wants to ensure all credit is given to Him!  What better way to grow our faith, and the faith of others, then by miraculous intervention.  It is so hard to live this way, but I would rather live this way and have what we need then try and control things myself and not be able to pay for all four of us to be treated for Lyme Disease.  I know that if I were left in control we wouldn't even come close to having enough money.

     The bedroom in our new home is big enough for me to keep my book cases in it.  I have been sitting in my bed looking at the books on the shelves for weeks and it only just recently occurred to me that I have plenty of time to read.  Over the winter my ability to read was hit or miss, this summer that is one thing I have been able to do more consistently.  My grandparents had a huge collection of books and I claimed many of them.  Almost all of their books were of christian origin, many from over thirty years ago.  I realized I had the treasure of all the literature that contributed to my grandparents faith.  What a legacy left for me!  What better use of my time then reading these christian works written so long ago.

      The first book I randomly chose was a collection of three condensed books.  I picked away at reading them slowly, until yesterday.  Yesterday I became engrossed in a book titled, "His Banner Over Me" by Martha Snell Nicholson.  The first thing that drew me into her story was her childhood love of the outdoors.  Just like I always felt I was a "kindred spirit" to Anne of Green Gables, I quickly felt a connection to Martha Snell.  I thought, at first, her story would be a story of how she worshiped God through her poetry, which I assumed was inspired by her love of nature.  It didn't take long for me to discover that our love of nature wasn't all we had in common.


     Martha was a sickly child who often missed school.  Despite her many absences, she strove to achieve good grades.  She also loved studying philosophy, sociology, and psychology.   Our childhood and teen years were extremely similar.  As a young adult Martha watched her mother die from cancer.  This left herself and her two sisters home to care for their dad while attempting to attend school.  Martha took a job working in a library, during this time her sisters left home and Martha took on the household duties while continuing to work.  When one sister returned home able to assist with these tasks, Martha's body final gave out and Martha found herself sick and bedridden.

    A new doctor was called.  Like most chronic lyme patients, Martha had seen many doctors over her life and been given many diagnoses.  Finally, this new doctor diagnosed her with tuberculosis.  Martha spent the next seven years bed ridden.  SEVEN YEARS!  Here I am feeling sorry for myself because it's been nine months.  Not only was she bed ridden, but she spent many of those years away from her loved ones in a sanitarium, and then in TB Boarding Houses.

     As I read these details about Martha's life and saw the similarities to my own health issues, I became curious about what it was like to have TB in the early 20th century.  Even now TB is difficult to treat, requiring months of multiple antibiotics over a long period of time.  When Martha was alive, having active TB was serious to the point of death.     Antibiotics weren't yet available for these patients, and the only "treatment" was a risky surgery that collapsed the lung causing it to 'rest' allowing the lesions to heal.  Martha had this surgery and came out of it sicker then before.  Patients during this era were also isolated from society in sanatoriums which were self-contained communities often considered the waiting rooms for death.  Patients were expected to rest most of the time and only some were allowed to participate in light exercise.  Along with this, they were forbidden to speak to each other about their illness or discuss death, both their own and the death of others.  The purpose was to keep an atmosphere of positive thinking, focused only on getting well.  Patients were only able to get their thoughts on their illness out by journaling.

     Eventually, Martha was well enough to return home, and she was even able to get married!  She had a handful of years where she was healthy enough to keep house and enjoy life as a wife.  To soon, illness became a part of Martha's life again.  This time the doctor encouraged her to move to California.  California was where Martha and her husband went from simple faith in God, to a real understanding of Bible Doctrine.   Martha began to really study the Bible and discovered that her desire to learn about philosophy and sociology could happen through her study of the scriptures.  As time passed, her health once again improved.  She had begun to write poetry inspired by her studies in God's Word.  She later wrote that during this time of health she wasted a lot of time.  She was studying the Bible, but was doing nothing to actually serve God.  Soon, Martha found herself in bed again due to severe pain.  She would spend the next twenty-five years in bed.

     While I was reading this I kept waiting for the happy ending.  When I read that Martha spent the next twenty-five years in bed I felt I had been smacked in the face.  I thought God had led me to this story to show me that I shouldn't be so impatient to get well.  Now, I was faced with the realization that sometimes it isn't in God's will for his children to recover from illness.  I had this as a head knowledge, but I had avoided considering this as a possibility for my own circumstances.   When this knowledge had previously attempted to enter the front of my mind I had pushed it back with excuses.  Reading this truth in this context prevented me from reasoning away the possibility that maybe life won't ever get easier here on this earth.  As soon as I accepted this fact, I then was faced with the decision......will I still trust God?

     Although Martha spent the next twenty-five years in bed, that time was spent serving God.  She had lost all excuses to use the God given talent of taking his word and expressing it clearly through poetry.  Over these years, stuck in her home, she wrote seven books of poetry and many tracts.  She was only able to experience church through her radio.  She was only able to experience fellowship through others coming to visit her.  During this time her husband also became sick and bed ridden.  The two of them were completely dependent on God's provision.  Eventually, she lost her husband to his illness.

     I either trust God or I don't.  It's really very simple.  So, yes, I trust God.  No matter what.  Martha didn't know that her years in bed would prepare her for the work she did during her life time.  Not only that, she didn't know how far reaching the affect of her illness was on the lives of others.  Here I sit, 100 years after she was first diagnosed with TB, finding comfort in her autobiography.  A book, long out of print, found its way into my bedroom and has helped give me perspective considering my own illness.  If God had graced her with a quick recovery, her life would have in no way ever touched mine.  How can I question the Will of God?  I will end this blog with a poem written by Martha.

Pain

Does your bitter load of grief, tears and pain, 
Seem to great for you to bear?                                                            
Don't complain.  you are only being made fit to reign;
Fit to reign, with Christ our Lord.

Surely we are all unfit, all untaught;
And if wise and lively lore, knowing naught,
All the gold of Uphoe could not have bought,
Private lessons from a King.

Precious pain to teach His child, used of God, 
Taught by very God Himself, and we complain.

The Frustration of having an Invisible Illness

   

I Now Get the Frustration that comes with having an Invisible Illness

     In many ways I was fortunate to have been so obviously ill.  The sudden change in my physical appearance from healthy and active to being in a wheelchair with uncontrollable muscle spasms was drastic and scary.  There was no denying that something was very wrong.  Because of the obvious signs of illness I never dealt with the issues many lyme suffers have to deal with.  We will ignore the fact that I only got so bad because of my stubborn refusal to accept I was sick.  In reality, most people apparently have the common sense to demand answers to their health problems way earlier in their symptom progression.
     I have read many accounts and heard many complaints of lyme patients who were frustrated when people said to them, "you look so good!", or "you look so much better".  I honestly couldn't understand why lyme patients couldn't just take those comments and accept the good intentions behind them.  The people saying these things were only trying to be encouraging, why were lyme patients being so negative about it?

     It wasn't until this summer, now that I am eight months into treatment, that I began to understand.  First, if you have said this to me, no worries! I am happy to be out and I am happy I don't look sick anymore.  Still, I do now understand the frustration lyme patients feel when hearing these comments.  The most common comment I hear is, "you are looking so good, it's so nice to see you out!".  I always responded by saying I was happy to be seen!  After months of being stuck at home it was so nice to not only go out, but to have the energy to do my hair and makeup first and then once out be able to have conversations with people. So even then these comments didn't bother me and I still couldn't understand why other lyme sufferers were so bothered by them.

     Now, a few months later, I completely get it.  I am at a new point in my journey to recovery.  It is no longer an endless stretch of bad days where the occasional good day was a day where I could do a load of laundry and read a few chapters in a book.  I have days that are so good I can go for a short walk, help with more rigorous housework, do some bookkeeping, or even teach a taekwondo class with the help of my trainee instructors.  I don't do all those things in one day, but on my good days I usually can have an hour or two of activity, rest a few hours, and then have another stretch where I can get more done.  Right now I seem to have a couple of good days followed by a couple of bad days.  This also doesn't account for the days that are REALLY bad, the really bad days are the days I'm taking medicine that causes me to herx. Putting it all together, I still have many more bad days then good days.

     So, when I am out and about on a good day, and hear people say how it's so nice to see me looking like I am feeling better, I wonder if they realized how sick I still am.  It's true, I am feeling better!  I am happy that overall my body is working more normally.  I no longer use a wheelchair or my handicap parking tag.  I can talk to others without my arms having a mind of their own, flaring around as I speak.  I can pretty consistently walk without the weird neurological gait I use to have.  I can even do short shopping trips without using the store scooter!  So yes, I'm feeling better.

     It's also true that my bad days are really difficult to get through.  The fatigue is overwhelming, making getting out of bed almost impossible.  The pain is unrelenting so even if I do get out of bed I can't do much.  The vertigo makes me feel like my house is a boat and I often have to take Dramamine to just be able to walk around.  The optic pain makes reading and watching tv impossible so I am not only stuck in bed, but I am bored out of my mind.  I usually am able to have brief moments where I connect to the world through my phone, beyond that, I feel pretty invisible on my bad days.

     The problem lyme sufferers have is that nobody sees us on our bad days.  We only leave the house on the days our bodies are functioning and our pain is tolerable.  When we hear how much better we look it is easy to feel invalidated.  I didn't feel this way at first, but now that I have been able to leave the house more consistently I have a hard time not feeling this way.

     As a lyme patient I am already facing many obstacles. The general medical community denies the existences of my disease resulting in even many of my peers denying my disease as well.  There are few local doctors who treat lyme, and none that I have found who treat chronic lyme as aggressively as it needs to be treated.  So along with being sick,  I have to travel out of state to get good medical help.  Insurance doesn't cover much of our treatment protocol or the lyme doctors who treat us which causes financial stress.  To add insult to injury, I am to sick to work leaving me dependent on others.  Oh, and don't forget this isn't just me, my husband and two of my children are also going through this at the same time.  So I am trying to be a good wife and mother and do what little I can to help them as they deal with their own illness and treatment.  All of these problems are the problems of every lyme patient.  To make matters worse, we are in treatment for not months, but for years.  I know I would be tired of hearing someone go on about their health for years, so I don't really enjoying constantly bringing attention to my own health.  I do so for one reason, to bring attention to this national health crisis.  A health crisis that could easily be YOUR crisis.

     When you tell a lyme patient we are looking better, we worry that you think the struggles of the illness are behind us and we are close to being recovered.  This is the furthest from the truth.  Let me use the past two days as an example.  Yesterday I felt like going to church.  While at church I continued to feel ok.  Unfortunately, Jenna, who is at the beginning stages of treatment, was feeling sick and we had to leave early.  After church I took a two hour nap and when I woke up I felt like getting out of the house and doing something.  We will ignore the fact that I had spent the previous two days in bed.  We will also ignore the lack of house work that had been done over the past few days. It is summer, and I wanted to use my healthy day to enjoy the outdoors!  I was hoping the kids would want to join us on a summer excursion.  Chelsea was struggling with pain and fatigue and wanted to stay in bed.  Jenna wanted to come, but her vertigo was making her nauseous.  Because I knew how bad she wanted to get out and do something, Scott and I went and bought some more Dramamine (we were out of course, three of us needing it so often tends to cause us to run out of it easily).  Thankfully, the Dramamine did the trick and we were able to head to Seawall with Jenna and her boyfriend.  It was a short trip, and wore us all out.  Luckily, we had some pizza kits at home making supper easy to make.  It was a early night in bed for everyone.

     WooHoo! I had a good day, sometimes when I have a couple of good days in a row I trick myself into thinking it is going to be clear sailing from here on out.  Wrong!  Seriously, if I can be that delusional when I am living it, how can I  not expect others to think the same way?

     Then today, talk about a buzz kill.  Not only has today been horrible, it has been one of the worse days I've had in months. I wasn't surprised, just disappointed.  I wake up every day hoping for a good day.  In reality, I am having more bad days then anything.  I know it's part of the course, but it still is frustrating.  If I am tired of being sick I can't imagine how tired everyone else is of hearing about me being sick.  The downward turn isn't because treatment isn't working.  It's because treatment has worked so well on lyme and babesia we are now targeting bartenella more seriously.  This is how this disease works.  One step forward, four steps back.  Most people only see me on the one day I am well.  So, like most people in treatment for lyme, we feel like the four days we aren't seen are being ignored.  I know this isn't the case, at least purposefully, but it still makes us feel invisible.

     I originally logged on to update you on the whole family.  There is a lot to update.  I will do that in my next entry.  I just really felt like I need to share this with you, mostly because I was a tad judgmental when other lyme patients expressed this frustration.  This is my way of saying that I get it, and I'm sorry for passing judgement.  To my friends who are reading this, don't stop telling me you are glad to see me or glad I am improving, but along with those comments, ask how I am doing overall.  That way I don't have to feel like I'm lying when I smile and nod in agreement, or feel like a looser if I correct you in how I'm really feeling.  Actually, it is good for me to be reminded how far I have come.  I do tend to get lost in where I am at right now.  Whenever someone tells me how good I am looking, I use that comment to remind me of where I was at only a few months ago.  I use my good days as bench markers to help me stay focused on continued improvement instead of feeling lost in all that is difficult about this disease.

Shopping for a Doctor

Patients are consumers.  We have the ability and obligation to be choosy when picking which doctors to give our money to.  Being consumers, we also have the ability to control, in part, what the medical community provides for health care.

Before I go on, let me just say that I DO understand our options are limited by the insurance industry.  Unless you have the financial ability to pay for private insurance or pay for appointments yourself, it is more difficult to feel as though you can be selective in who you choose to provide your medical care.  Don't fret! There ARE plenty of wonderful doctors who are worthy of your money (or your insurance companies money), you just have to look harder.

Sadly, though, many of our best doctors are beginning to opt out of the insurance companies steel grip over the health care system and you do have to pay out of pocket, or best case scenario, a higher copay to receive their services.

This blog isn't about the insurance industry, instead it's about choosing who is your partner when making decisions about your health.

When it comes to your health, YOU are the final say in your medical decisions.  That's right, your doctor is there to provide options, make suggestions, and refer you to specialists.  In the end, the decision is YOURS and yours alone.

Nobody knows your body better then YOU!

Before I go further, let me give you some inside information.

A friend of mine is a highly credentialed medical specialist in a major metropolitan hospital.    He/She told me once that in medical school doctors are trained to do two things: prescribe medicine and do surgeries.   When they leave medical school they have exorbitant bills to pay off.  In order to pay off their student debt they do what makes them the most money, prescribing pills and doing surgeries. I am just repeating information given to me by someone disillusioned by his/her own field.  I have no first hand knowledge of this.  I do have another doctor who did confirm this to be true by telling me that there is little he/she could do as far as investigative medicine.  He/She said that she is able to prescribe meds to help relieve symptoms but that is about all.

Both of the above, unnamed doctors had one more piece of insight.  Don't settle for being given medication to treat symptoms.  To truly get well you need to find the root cause of those symptoms. Many of the diagnosis's out there today are simply a name for a list of symptoms that have no explained cause.    Patients sit at home waiting for research to happen to find out what is causing the symptoms.  News Flash!  Research is being done, but not on the cause of the symptoms as much as on what medicines will HELP RELIEVE the symptoms.  Our pharmaceutical industry has a heavy hand in politics and research.  People who are cured DON'T BUY MEDICINE.


Ok, I'm getting of topic.  Before you write me of as some loony, let's get back to discussing how to be a consumer in the health care system.

First, many doctor's hate when patients do their own research.  Doctor Google is creating many hypochondriacs apparently.  Let me ask you this, when you buy a car, how much research do you do?  Is it better to go into the salesmen armed with information or better just to trust the salesmen blindly and accept their price and their information on the vehicle?  If you do research on a major purchase like a car, isn't it even more important to do research on your own health?

Doctor's don't know it all.  It's impossible for them to!  If your doctor thinks they have the answer to everything, or if they think that if they can't find an answer then there mustn't be one, it's time to find a new doctor.

So, when you are doing research, be wise in evaluating what you read.  First, the most important thing to know is where the information you are reading is coming from.   An easy beginner tip is to look at the domain of the site you are getting your information from.  If it is .edu, .gov, or .org then you are on the right track.  Where this blog isn't about researching I would suggest researching how to research on the web!

When you go to an appointment, don't assume you have all the answers either.  You are hiring your doctor as a professional because they have the medical degree and experience, not you!  What you should expect is that your doctor be willing to listen to your questions and concerns and if they don't know the answer, or don't agree with your information that they be willing to say so and also be willing to go research for themselves and get back to you.  Even more importantly, your doctor should be willing to admit if they are wrong.  Yes, there are doctors who do this! Crazy, I know!

Also, your doctor should be not only willing, but should encourage you to shop around!  If they are good at what they do then they will be confident in you to make the right choice for YOU!  In the martial arts school we own I encourage seekers to look at all their options for martial arts in the area.  I am confident we provide an excellent program and if someone chooses to go somewhere else then they wouldn't fit into our program anyway and they are better of staying at the program of their choosing.  The medical profession is no different.

If your doctor bashes on other medical professionals of any capacity, no matter if their degree or specialty is the same or different, it's time to get a new doctor.  Now.  Don't waste your time any further where you are at.

If you are seeing another type of medical professional such as a naturopath or chiropractor, your doctor should be willing to work collaboratively with them.  If you feel resistance with no valid reason, move on to the next doctor.

Bottom line, YOU not THEM are in the drivers seat.  You are hiring them for their expertise, but in the end all decisions for your treatment are yours.  The doctor you choose should understand this.

When we complain what is wrong with the medical community don't forget that we have choices.  If we take our dollars to the right doctors, then the rest of the medical practitioners will have to change course if they plan on staying in business.



If you are reading this and are truly limited in your options then there is one more thing to do.  Know your body, know the most update information that is available, and keep bringing it to your doctor.  If enough patients do this then eventually even your doctor will start to listen.  Please, before you follow this advice, be well informed with accurate information, be calm and professional in your conversation, and be polite and respectful to your provider because they did work hard to get through medical school and they do deserve the respect that is due for that accomplishment.  If you are negative, or come across as attacking them or their career, they will naturally become defensive and not be open to the information you have.  If you want to be taken seriously, then you do have to take them seriously!