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.

The Perfect Storm

Most of you know I really TRY to see upbeat side of things, and although I get down, I don't stay there long. This recent episode has put all of that to the test and then some.

Yesterday I went to the pain management doctor. He changed my dose in an attempt to get things back under control after all I have been through. This in itself it upsetting, because before the insurance company messed things up, when I was on medication and stable, I was taking a dose that is half of what I am taking now. So thanks to all my body has been put through these past 4 months, I am on double the medication I was.

My doctor is an Orthodox Jew. I mention this because it has bearing on the rest of the story. I saw him yesterday afternoon, which is unusual for me, I usually see him early on Fridays, but because last night and today are both Jewish holidays he wasn't going to be working. He wrote my script and I headed straight to the pharmacy with it. I've learned my lesson well with this because if there is a problem and I wait to get it filled, they can't reach the doctor.

I arrived at the pharmacy to find their computer system down and them unable to fill prescriptions because of it. For those of you who are lucky enough to not need pain medication I can hear you now, "why didn't you just have it filled elsewhere?". Besides the fact that I truly believe that it is safer to fill everything at one place so they have an accurate record of all the medications I am on to check for interactions, etc. . . there is also the issue of taking a narcotic pain medicine. If you start filling prescriptions at different pharmacies, it raises a red flag with the government and your insurance company. They see it as "drug shopping", which is evidently something that addicts do in an attempt to get more of the medicine than they are supposed to have. In any case, I left the prescription with my pharmacist who promised he would fill it that night or first thing this morning, depending on when the computers came back up. In the meantime, he gave me 3 pills to get by until it was done.

This morning when I went to call to see if it was ready for pick up, I found a voice message in my inbox from the pharmacist. My insurance company was refusing to fill the prescription on the basis of number of pills prescribed in a 23 days period and (you can't make this stuff up folks!) they also had approved my medication in the brand form at the old dose, so I am now informed that my doctor will have to go through the WHOLE APPEALS PROCESS again for the new dose!

The reason I mentioned about my doctor being Jewish is that normally I could reach him and we could talk about what I might be able to do as an option, but as it is a Holy Day for him, I cannot reach him until Monday. This left mom and I trying to figure out what the best choice was, which ended up being buying the prescription outright for over $1200 on mom's credit card (this is a 30 day supply mind you!!). The other kicker to this is that the $1200 won't even count towards my "donut hole" because they haven't approved this medication now so as far as the insurance company is concerned it doesn't exist! That means I am still paying for 100% of ALL my medications while I am in the donut hole, not just my pain medicine.

I will have to contact the doctor first thing on Monday and get him working on the appeal, which I am sure will put a strain on relationship as it was an arduous task to go through once and neither of us will be happy to do it again.

In the meantime, I am where I always am, stuck in the middle with little or no control over any of the situation. I was reading Laurie Edwards blog post from A Chronic Dose the other day on illness and PTSD and thinking of how this situation makes me feel like I did two years ago when mom and I were forced to move back up to NY due to health problems and find a pain management doctor for me. We went through so much and it was so upsetting, and now it feels like that all over again. All the fear, the uncertainty, the frustration come back in waves. Even though I remind myself that it worked out then, it still scares me and makes me feel like I did back then.

I wonder how many of us go through this during really bad flares, etc. . . Right now my normally hopeful nature is being beaten down by the stress and fear, and I am more afraid than I have been in years. I also know my body and emotions are off kilter from all the medication changes. I just wish things didn't have to be so hard, and frankly at the moment I wish I had a partner or someone whom I could trust to handle all of it so I could just concentrate on getting well and not fighting the system day after day.

Hanging in There

Well tomorrow is the next follow up with the pain management doctor in an attempt to get my life back on track. In the meantime all sorts of other illnesses have been exacerbated by this wonderful pain flare. My immune system is simply not working, so that is wrecking havoc all over my body. Add the extremely high pollen count we have had and a whopper of a sinus infection to systemic thrush and you can imagine what a lovely time I am having.

My mother is suffering with the shingles at the moment, her sixth bout with them! We are both trying to find some kind of "normal" which has escaped us completely for the past few months. I know life with chronic illness is a delicate balancing act, but I had forgotten had terrible it can be when everything goes at once. My house of cards has fallen and I feel lost. I don't usually get down and stay there, but the medications have also played a number on my emotions as well as my body. For instance, I have always been underweight, couldn't really put weight on if I tried. I know that probably elicited moans from many of you who battle their weight constantly. Well, I can honestly say I understand now. I have put on over 30lbs. in three months. I went from a size zero or 2 to an 8! NOTHING, not even my shoes fit anymore! We are still trying to find the cause, which may be the steroids I take for adrenal insufficiency, although I have been on them for almost 2 years so it seems odd they would suddenly pack the pounds on. Compared to most I still pass for a reasonable weight, but I feel awful and look awful to me. When you are used to being thin, it is very strange to suddenly be heavy. I know it isn't the end of the world, but it is one more thing that is out of my control at the moment and unknown.

I am do to start going back to immunologist, and perhaps getting gamma globulin infusions. I have infections that won't go away and fevers all the time, which is odd when you are on steroids, which should lower your fever.

I am sick and tired and broke. I feel like I will scream if I have to see another specialist or get another diagnosis! I'm tired of being moody from medications, lack of sleep, pain and life in general. I feel badly that I am short with my mom so much of the time simply because she is here.

All that said, I have been so touched by the many kind comments I have received from so many of you, it helps so much to know that others out there"get it" and care and send their support and love so freely. When mom and I moved to NY almost 2 years ago, it was so I could finally get help from a pain management doctor. We had tried all over NC and got no where. I am grateful to have found my doctor here, and despite the past few months (which were caused by insurance company greed not doctor error!), I know my life is better. But we still have a house in NC that hasn't sold, and in this economy it could be awhile longer before that happens. The financial strain is tremendous and it isn't just myself I have taken down, but my mom with we. I have a lot of guilt about it.

Please keep praying and sending support. And if you happen to know someone looking for a lovely 3 bedroom house in NC, please put em touch with me!! LOL!!

Update

I haven't been posting a lot lately, as many of my regular readers have noted. I had been planning to have surgery, which was then postponed due to infection. I am still not able to schedule the surgery because we haven't resolved the infection issue as of yet. In addition to dealing with all that entails, I have been switching pain medications. The pain medication I was taking was working well, it controlled my pain with side effects that were live-able. Unfortunately, my prescription coverage decided to stop paying for the particular drug I was taking and the cost for me to buy it out of pocket was not even a possibility (think mortgage payment and you'd be in the right ballpark!). This led me to try the generic alternative of the same drug. The generic did nothing to control pain and caused lots of unpleasant side effects. Just recently my pain management doctor changed my medication altogether in the hopes that we will find something to get the pain back under control. All along he has been fighting with my insurance company, trying to get them to approve the original medication again since it works for me and I can tolerate it. Of course we all know it isn't what the doctor thinks, or what works best for the patient anymore, it all comes down to money and what the insurance company will pay for.

So, I have been in a lot of pain. I have been fatigued from the pain and from fighting the infection that won't go away. I have had other issues as well, but those are the two biggies which have kept me from blogging. Most of my days are spent trying to do the things I HAVE to with little or no energy to deal with the things I WANT to (like blogging). I have missed the contact and the conversation of this blog and the wonderful readers and friends I have made through it.

I intend to do my best to keep blogging as I am able and I appreciate the support and understanding you show me when I am "quiet" for awhile. I am also way behind in reading the blogs I usually keep up with, so I apologize to those of you who haven't seen me commenting on your posts either.

It's another fact of being chronically ill, we don't always get to control things. I used to get really upset over that fact, and feel guilty because I couldn't keep up with other people. Now I realize that I am just fine the way I am. I take care of myself when I need to and I know that the people who care about me will understand. I am so grateful to have that peace. It was a long time coming, but it has made all the difference.

Looking forward to better days ahead and lots of posts and conversations with you all!

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.

Pain Blog Carnival Is Up!

February's issue of the Pain-Blog carnival is up at How to Cope With Pain. Please check out all the great entries this month!

The Caregiver Role

As I have mentioned before, I live with my 75 year old mother, which is a blessing for us both. Shortly before I began blogging, my mother had been hospitalized for 10 days and had developed C. difficile, an infection in her intestines, while in the hospital. Well, the C. diff has returned. This is bad for mom, but also for me. With my multiple illnesses, and especially being on hydrocortisone therapy, I am very vulnerable to catching infections. When mom had this infection the first time, I started to manifest symptoms of the illness and was put on an antibiotics prophylactically because the gastroenterologist was concerned about the possible effect to me due to my inability to tolerate the antibiotics that normally treat this infection, as well as the fact that I take pain medications that slow the movement in my bowel down, making the bug live longer in my system.

The other wonderful thing about C. diff is that the only thing that kills it is bleach. You can't use antibacterial wipes to clean up in the bathroom or Purell on your hands. Since mom and I share a bathroom, that means constant cleaning with bleach, as well as vigorous hand washing with hot water and soap for no less than 30 seconds each time you use the restroom. Well, at home that isn't so hard to do, but try that in a public restroom. Many times you can't even find soap, let alone hot water or something to dry your hands on. Even at home, there is the joy of standing there in the middle of night, trying not to wake up while you wait for the water to get warm and you start to clean and count.

My poor mom has the worst of it of course, but it is another reminder that I cannot ever just be caregiver, I have to always worry about how things affect my own health. I need to try to stay healthy so I can care for mom. She feels guilty exposing me to an infection she didn't cause. I guess the apple really doesn't fall far from the tree in this case!

I am blessed, to still have my mother and to be able to help care for her as she has done for me for my whole life. Still, it doesn't make it easy to handle the extra cleaning and the worry, but given the alternative I am will happily deal with both.

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.

Rough Times Ahead

For many of us with chronic illness, chronic pain goes hand in hand. I, unfortunately, fall into this category myself. For many years I resisted the idea of pain medication and was able to function without needing it. During the last four years, as I became increasingly ill with more things, especially chronic pancreatitis, it became clear that I had to change my way of thinking on the matter of pain medication. I went through 2005 with more time spent in the hospital that year than home, mostly because I wasn't on pain management. Finally during a six week hospitalization around this time last year, I was sent home with medication. The experience was so bad I don't even want to recount it here. I wasn't given the appropriate medication, the correct dosages or any sort of support from a physician to monitor me. This all necessitated a move out of state to find competent medical care.

Beginning in January of this year I started seeing a good doctor where I moved, who not only finally got the pain under control, but carefully monitored me and helped me to finally get control of my life back. The approach in his office is multidisciplinary, meaning I am also seeing someone who works with me on stress reduction and alternative ways to manage pain, such as relaxation techniques, guided imagery and biofeedback. To say it has been a long, scary and painful road back to myself would be the understatement of my life.

Today my doctor and I met for our regularly scheduled appointment and he said the thing I had been fearing most, "we need to start trying to cut back on some of medications". I know he knows what he is doing, that he has my best interests at heart and that he will be there to support me. I know all these things logically, but emotionally is another thing entirely. Emotionally I am frightened of going through pain, withdrawal and the whole terrible upheaval that had been my life prior to this hiatus. I know that thinking positively is the best cure for the fear, but the pain and the fear are so fresh in my memory that at moments they overwhelm my logical side. I fought so hard to get back to where I am now, which isn't anywhere near where I wish I was, but still compared to where I was a year ago, it is miraculous. I don't EVER want to go back to the pain, the withdrawal symptoms, the lack of concerned medical care. I didn't uproot my whole life, and that of my mother with me, to go backwards.

I know logically that this doctor isn't like the other ones. He does listen. He is actually available when you call, and if for any reason he isn't, there are other doctors available through the practice 24/7. The first "pain management" specialist I saw was in two days a week and not available at all in between, so if you had a problem, you suffered until you could reach him. This doctor isn't him, and I know that. But I still have fear.

I write this not to scare anyone else who may be needing pain management, without a doubt getting the help I needed was the best thing I ever did. I wish the process had been simpler, so the fear wouldn't be so great. I write because I know that many of you out there understand. If you haven't experienced it personally, you have watched someone you love go through it. I write because giving a voice to my fear takes away some of its power. I write because I always want to be honest about where I am at and what living with chronic illness is like, even the parts that aren't pretty and upbeat. I want to be true to myself and to those who read this.

So, as I head into my scary time, I am using each one of you as my imaginary cheerleaders. I think of all we go through each day and all we accomplish despite the obstacles we face. I promise to use the techniques and self care I have espoused to you, taking care of myself as I head into this. I ask for your prayers, support and good wishes that things will much more smoothly than I am anticipating, and that this 'bogeyman of fear' will be banished quickly and permanently.

Tomorrow I head back to the infectious disease doctor for test results that will point either to a problem in that area or possibly back to the adrenal insufficiency to explain the fevers, fatigue, diarrhea, pain, etc. . . that I have been suffering from. Soon I will have the biopsy on my thyroid that will help determine what is up with the nodules. Each day will be a new worry, but hopefully also a new answer. During times like these, it is sometimes tough to remember that the bad times never last forever.