And The Beat Goes On

Have you ever had so much to say you didn't know where to start? That's how I feel right now writing this post. So much has happened, and yet it would be ridiculous, not to mention novel length, to tell it all. So how to sum up without dismissing the horror of the past few months. . .

Obviously things took a big turn for the worse with the insurance company debacle over covering my pain medicine. That, for the moment, is straightened out. What I have learned along the way is that everything is always hanging by a thread, waiting to fall apart with little or no notice. Because my body was put through so much with out of control pain, I am now on even higher doses of pain medication than I formerly needed. This not only angers me, it costs me more and will in the end cause more problems for me medically. The blame for it sits squarely at the feet of the insurance company, who of course could care less.

Not surprisingly I am having all sorts of other medical issues. Many of these are directly related to the stress my body and mind have been under while fighting to get my pain back in control. I am currently going for testing to see how my pancreas is doing, if there has been further damage and if there is anything else that can be done to help. My immune system is completely shot, so a host of other problems has cropped up as a result of that, continuing infections, malfunctioning parts of my endocrine system, mysterious weight gain and water retention. I have more problems than time in the day to address them.

I am seeing lots of doctors, including quite a few new specialists, who are trying to address the problems - many of them don't have answers. Fortunately, being a veteran of "invisible illness" I am all too familiar with this scenario, so I mostly take it in stride.

In the meantime I have been taking a long, hard look at the things that ARE in my control, and what I am doing to support myself. The first thing that seems to go is self care, which of course is most important. I listened to Jenni Prokopy's first podcast over at ChronicBabe, and although I knew most of the information, it was a nice reminder. Good advice handled with humor and compassion. I recommend checking it out, even if you have been ill for a long time. Sometimes we all need a kick in the pants, and the information she gives, while basic for those of us who have been dealing with chronic illness for a long time, is still helpful.

I am so grateful for the many wonderful e-mails and comments I have received from many of you while I have been struggling. I never cease to be amazed at the amount of love and concern that people have to share, and am humbled that they choose to share it with me. Even though my posts have been erratic and fairly maudlin lately, I have been lifted up by the care and support of each of you who took the time to say you where thinking of me, praying for me, understood what I was going through or just plain cared! Thank you from the bottom of my heart. It is support like this that keeps me going when I feel like I just don't have another fight left in me.

Hopefully my posting will start to be more regular again, and of course I hope to touch on something other than just my illness in each post. Thanks for hanging in there through the dark times and please keep coming back to share the lighter times as well.

The Ugly Truth

Again so much time has passed without my posting. The truth is that I feel so down I just haven't done it. There, I admitted what we (the chronically ill person) are NEVER supposed to admit, I am down. All of the past few months events have left me not only physically worse for the wear, but also emotionally and spiritually spent. It is really scary for me, I am not someone who gets down and stays there, I'm more of a "okay the pity party is now officially over, let's get up and do something constructive" type. The truth is I have absolutely no idea what to do.

My medication is not being covered again, so I am trying to find $1200 a month to pay for something I have to have to function, while the insurance company and my doctor duke it out. I have absolutely no control over the outcome, which is terrifying. In the meantime, I am also in the wonderful Medicare Part D "donut hole" so NONE of prescriptions are covered at all. This will continue until I pay $5500 out of pocket (oh did I mention I DON'T HAVE IT!). I HAVE to take most of my medications, for instance without my hydrocortisone my adrenals don't function. Not taking my medication isn't an option for me. Again, I have little or no control over this.

Each day seems to bring another health issue (no big shock considering what I am going through) which adds to the already enormous stress level. I am bone tired, dealing with all the physical issues, which range from systemic thrush, to a shoulder in need of surgery, to immune system issues to fevers is enough without the constant money problems, the fights with the insurance company and the never ending trips to the doctors. I want a day off. I want to not worry for 24 hours. I want someone else to slay the dragons for the day. It won't happen, but I can still wish for it, can't I?

So my posts have been few and far between. At least when I have the medication I can actually sit at the computer, without it I cannot for the pain is unbelievable in this position otherwise.

Most of my doctors are pretty good, but we have a health care system were each doctor is so specialized that they only focus on their particular area of expertise. I wish I had a good internist who pulled it all together and saw how one thing is affecting the other, but I don't, and despite many attempts to find one, I simply haven't been able to. I can't even get angry at the doctors, the system itself is so broken that they do all they can. The truth is that chronic illness isn't handled well in our country. We are a deal with it after the fact nation. We don't do prevention well. We don't take the time to study the effects of one issue on another.

Those of you with chronic illness will understand what I mean, and, I hope, those of you without may learn something new from my perspective. In the meantime, I will keep putting one foot in front of the other and praying for better days ahead. It's all I can do in the end, the rest is in God's hands.

Advocating - Sometimes It Works, and Sometimes It Doesn't

I think for me one of the most frustrating parts of having chronic illness is the constant need to advocate for myself. It is tiring, both emotionally and physically, but I know it is important so I do it to the best of my ability. I encourage others to do it as well, so it is an area where I try to "walk my talk".

I was scheduled for surgery on March 18th. Because I have a complicated medical history, I addressed issues with my doctor as soon as we agreed that surgery would be necessary. I take pain medication daily, so that is a big issue that has to taken into account when you are talking about having any sort of procedure. For one thing, my body is used to having that type of medication, so my need for proper dosages of anesthesia and post operative pain care are different than the average patient. Another complication comes in from the area of my adrenal insufficiency. Because my body doesn't make cortisol the way it should, I have to take hydrocortisone daily as a replacement. Any time I am sick or under a lot of stress I have to take additional doses. This is especially true for something like an operation or procedure. It is another item that needs to be dealt with before any surgery, hospitalization or procedure is done.

Knowing all of this, I have been diligent in getting my GYN (who will be performing my surgery) to contact the other specialists who handle these different aspects of my care. It is annoying to always have to be the one who brings these items up, but I have learned from past experience that the only person who suffers if I don't is me, so my advocating for myself is purely self-interest.

Despite the fact that my surgery was scheduled over 3 weeks ago, and that I have tried to make sure that all of these factors were taken into consideration, I learned yesterday that my surgery was being cancelled for the 18th and will have to be re-scheduled. The long and short of it being I need to be the first patient of the day to deal with the pain management control area of my case. One doctor blames another for overlooking this crucial point, but the fact is it doesn't really matter who is at fault because once again the person who is affected the most is ME. I am annoyed because I have spent the past few weeks getting ready both mentally and physically to have this done next week. I have spent time going to appointments that revolved around pre-op stuff, making sure that people would be available to help me out after the surgery since I won't be hospitalized, getting things in order at home and a million other tasks that required my energy and focus, both of which are always in short supply when you are chronically ill. Now I will have to wait for the surgery to be re-scheduled and repeat the whole process all over. Not only it is frustrating, it is upsetting.

The best part is that the doctors and their offices actually have the nerve to act put off by this, as if being chronically ill and needing all these special arrangements are something someone enjoys and likes having to deal with! Again, even with the best advocacy I could provide, the person who ends up paying for the mistakes of others is me, and as if that isn't bad enough I also get treated to a dose of attitude on top of it. I could understand their feelings if I waited until the last minute to provide them with information that caused them to have to re-schedule, but since the errors aren't mine I don't appreciate having to deal with hostility at their own mistakes being directed at me.

The only thing I can say is that in the past, before I learned how things really happened in our health care system, I would have trusted that the doctors would take care of all of this, and instead of facing a postponed surgery, I would be sitting in the surgical area without proper pain management and facing the possibility of adrenal failure or shock from lack of treatment for my condition. So I guess instead of looking at this as the total failure of my advocacy, I should look at it as a small victory - I no longer allow myself to be treated that way. I will have the surgery when the proper procedures have been put into place to make it as safe and effective for me as possible.

Only 3 Days Left Until The Election - Make Your Voice Heard!

I just was reading a post over at Getting Closer To Myself, and Leslie had a great link to a video from The Partnership to Fight Chronic Diseases we all need to see and pass along. I am posting the link here, in the hopes that you will watch it, and pass it along to others.

Chronic illness obviously touches my life, but it touches all of us, sick or not, in the cost of health care. We need to make sure that this is a priority this election. Many of my fellow chronic illness bloggers have written terrific posts on this subject, but the most important thing we can do is VOTE! In order to vote, we must educate ourselves on where each candidate stands on important issues, especially health care.

I previously posted links from The New England Journal of Medicine website which show each candidate's stand on health care. I will list those again here:

• For John McCain
• For Barack Obama
  

Another resource is The Kaiser Family Foundation 2008 Presidential Candidate Health Care Proposals: Side By Side Summary

Voting is a very personal thing, and many factors go into choosing the right candidate for each person. Please take the time now to decide for yourself what your most important issues are, and to do a little research into where each candidate stands on those issues. We are so blessed to live in a country where we can vote our free will and we must not take that freedom lightly. I am not endorsing any candidate, I am just asking all of you to use your minds, hearts and consciences and VOTE!

My Arch Enemy Makes A Return

PAIN!! It's back--not a surprise, but certainly not a thrill either. I am doing my best to cope. I am using the relaxation techniques I have been taught, using positive self-talk and distracting myself with good things as much as possible.

Tomorrow I will call the pain management doctor, who will no doubt be skeptical that "such a small drop in dosage would increase your pain". I will carefully explain to him what is going on, that I felt I should call before the pain got out of control, before I had to interrupt his weekend. He will hem and haw and eventually come up with a game plan. I will be exhausted before the call ends and feel like someone wrung me out physically and emotionally.

It all comes back to balance--trying to balance the pain with being able to function. Trying to balance having a life with chronic illness that involves more than medication, doctors appointments and prescriptions. Trying to live an authentic life, one that is true to who I really am, without being whiny or pitying. Trying, once again, to get others to understand that it isn't a choice, that we all do the best we can each day. Trying to balance caring for my mom, who is also ill, with caring for myself.

I would love to hear your feedback. How do you balance your lives? How have you gotten through, either to doctors, friends, loved ones or strangers? What coping mechanisms do you use for your pain, fatigue and the endless other symptoms we all live with?


For more information I have attached links from the New England Journal of Medicine on each candidates stand on health care:

For John McCain
For Barack Obama

Unfortunately, these articles point out what I have been saying all along, neither candidate has a sufficient answer to the health care crisis. Until we fix our broken system, I don't think anyone will.

First Time Visits With A New Doctor

An annoying, but realistic part of being someone with multiple chronic illnesses from Fibromyalgia to chronic pancreatitis to endometriosis is that you will have many different doctors involved in your care.  Most people have trouble finding one doctor they are happy with, so multiply that by the number of illnesses most of us suffer from, and you can imagine what it must be like for a chronically ill person to find good doctors.  We are all looking for someone who is medically competent of course, but it goes so much beyond that, and what qualifies a doctor as "good" can vary widely from one patient to the next.  In my case, I want someone who not only knows how to treat my illness, but who knows how to treat me as an intelligent part of my own healthcare team.  In order for me to work well with a doctor I need to know that they respect how well I know my own body and what certain symptoms mean for me.  In return I try to listen with an objective ear to the doctor's experience and what their gut reactions might be.  So much of medical care is subjective.  There are tests that can rule certain things in or out, but at the end of the day I want a doctor who listens and really wants to do all he or she can to work with me on the best quality of life I can achieve.

Like everyone else, healthy or chronically ill, I have had my share of both good and bad doctors.  I even have a few that have been exceptional.  But it doesn't matter how long you have been sick, or how many good experiences you have had, it is still nerve wracking to have to start with a new doctor.  This can happen for a variety of reasons; you move, your healthcare plan changes providers on you, your doctor retires, or your relationship with your doctor is shattered due to something out of your control to fix.  Whatever the reason, it puts you back to a place that feels emotionally vulnerable. 

I moved from state to state almost a year ago.  In that time I had a lot of things going on with my health status that needed to be addressed.  Not having the energy, physical or emotional, to tackle them all at once, I started with one problem and worked my way through.  Doing this required meeting with new specialists of many kinds.  Some of the doctors were a great fit right away, some required a little tweaking of the relationship to make things work for both of us, and some weren't right for me, causing me to start back at step one until I found the right doctor in that particular speciality. 

Today I had a first meeting with a new gastroenterologist.  I felt all the old anxiety creep back in.  Would he be knowledgeable about my condition?  Compassionate?  Understanding of how all my other illnesses interrelate?  Would he believe in me and work with me to help me to live my life as fully as I want to?  Would he work well with the other team of doctors I have already assembled?  I had an actual knot in my stomach as I drove to the appointment this afternoon.  It takes so much physical, mental and spiritual energy to go through everything from the beginning and to try to assess in one meeting if this will be a successful relationship.  I certainly have had my share of bad experiences, and they always leave me feeling drained, spent and frustrated.

I had the pleasant experience of having dreaded this appointment today for nothing.  The doctor I met with was on time, professional, compassionate, thorough and wanted not only my input, but that of my other team members as well.  Although I am grateful for the positive experience, I am all too aware of all the times this has not been the outcome.  In a system that requires doctors to see ever more patients in a day, and a host of problems that require time and attention, you are bound to have conflict.  So I guess I feel I dodged a bullet today, but there are still several specialists I need to find, and I can't shake the feeling that, based on prior experience, they won't all go as smoothly as today.  That being said, I am thankful to have one more good doctor and life affirming experience in my saga!