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.

Advocacy

Since that was the topic I left off on before all this started, I wanted to pick up the thread briefly again to say I have been self advocating these past few months, and although it is exhausting and frustrating, it is so necessary! I don't have a spouse or significant other to take care of it for me, so I have to take care of myself. There are days I can't do it, I won't lie, but I try my hardest to fight for me, because let's face it, no one else will!

The fact that I have put thought into things BEFORE a flare or catastrophe has helped to make things easier. I have also accepted any and all help offered, no matter how small or insignificant it may have seemed. Anything I don't have to do is a help right now. If someone offers to pick up milk one day, I let them. If they offer to make a phone call or drive me, I say thank you! I can't be proud and pretend I can do everything when I am falling apart myself.

I still don't have a perfect support system. Other than my mom, I have no family help at all. I have few friends who understand or even offer. But there are some people who try and I appreciate it. I am brainstorming right now as to other resources for help, perhaps through my church, because we need the help. The point to advocating isn't to perfect, it is to keep trying and to not give up on finding help when you need it. It is also about being that help when you can.

I can and do offer myself to others when I am able because I know how hard it is. Believe me it comes back to you sevenfold. I don't do so others will help me, I do it because I know how grateful I feel when my neighbor offers to run to the store for me, when someone else takes the trash or recycling to curb on Sunday nights when I can't get out of bed, etc. . . Be a friend to others and you will always have friends. Some won't ever get what you are going through, but that's alright. It isn't a score keeping game, it's life!

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!!

I Am Alive

[Longer Than Usual Post Due to My Prolonged Absence From Blogging!! Get Yourself A Nice Beverage And Sit Back And Relax. . .]

Hi howdy cyberfriends! LONG time no write for me. First off I apologize, especially to those of you who took the time to send me a personal message and who I didn't respond to. As all of you have guessed correctly my good old friend, illness, has been plaguing me and my household, thus the lack of communication.

When last I wrote, I had mentioned the trouble I was having with my pain medication, or more accurately, with insurance covering my medication. I had been on the same medication and dose for a year and things were going very well, when my Medicare Part D provider decided they would no longer carry the brand name of my medication. Shouldn't be a problem, right? After all, there is a low cost generic alternative. Well my friends, let me let you in on a not too well kept secret (ask your doctor or pharmacist friends and they will confirm this), generics DO NOT have to be as effective as brand name drugs, they have to prove there is no more than a 30% efficacy difference and then they aren't tested again. Plus, the make up of the fillers, etc... is different, and if you have a sensitive system, as most of us with multiple illnesses do, you are talking disaster.

Back in February I started on the generic and began having problems with pain almost right away. My pain management doctor upped the dose to make up for the difference in the brand versus the generic, but by mid March it became clear that wasn't going to work. My doctor had been fighting with the insurance company from the first day to get them to cover the drug I needed, but they kept denying it, so we were forced to switch to another medication. Each switch requires an adjustment by my body and careful monitoring by the doctor. We tried a pain patch in the hopes that I might get some relief from the by now unbearable pain but alas it was not meant to be. As we had been telling the insurance company, I needed the brand medication. I couldn't afford to just buy it, it costs over $900 a month, so I became less and less able to function.

One of the MANY issues was (and to a degree still is) my inability to sit at the computer. At first it was for extended periods, but eventually I couldn't even stand or sit long enough to check e-mails, no less write a blog post or answer someone who had written. I haven't read anyone else's blog posts this entire time, because I couldn't do that either.

In the midst of all this, my mother had to have an emergency gallbladder surgery, and despite my own pain and problems, I had to care for her as well. Life became a constant battle of pain, with me using whatever energy I had to do the things I HAD to do, and no energy or strength left over to do anything else. We tried many doses and combinations of medications, until I was taking medicine every three hours and STILL getting no relief.

My doctor informed me just a little over a week ago that he had FINALLY won an appeal with the insurance company and that they would cover my medication again (until we get to go through the whole process all over again-but I can't go there right now!). Of course by now I am in the "donut hole" and paying 100% of all medication costs. That means until I reach the "catastrophic" co-pay amount I am on my own paying for this costly, but very necessary if I want to function, medication.

You can imagine the stress this has put on my physically and emotionally. I had been ill and trying to get infections cleared to have surgery to deal with another problem. Well, my immune system simply isn't working at all right now due to all my body has been through with pain, medication, switches in medication, etc. . . I am currently battling systemic thrush, a sinus infection and several other fun things.

Last weekend I was finally put back on my original medication (thanks to my mother's credit card, isn't that sad at 42 years of age!). I went through withdrawal as my body tried to adjust to yet another medication and dosage change. Thankfully, I have a wonderful pain management doctor who was available by phone all weekend making changes as necessary to make the adjustment as good as it could be. Still, it wasn't a fun process and the part of all of this that makes me so angry is that all of it is unnecessary. I have chronic pain. I have been treated for it on the same dose of the same medication for awhile and it works for me. It isn't like I have something they can't treat or that doesn't respond. Because I have MANY allergies to medications I have to have certain drugs and not others, sometimes not even their generic "equivalent". My doctor knows this, I know this, but the insurance company simply didn't care. Instead of listening to my doctor about what would be best for me, they chose to put me through hell for over 4 months, to the point where I could no longer function, not to mention the financial and emotional toll, before they finally agreed to "cover" the needed medication.

So for now, I am able sit at the computer again, although still not for long periods. I can see improvement, but thanks to my lovely insurance company I am now on almost double the the dose of medication that I was on, thus a higher cost, because in trying to control the spiralling pain my doctor had to increase the amount of medication he was giving me, and of course my body adjusted to those changes. None of what happened was necessary. None of what happened was fair. None of what happened was right. Am I angry? You bet I am! I had my whole life turned upside down for no good reason. I have suffered unbelievable amounts of pain and been reduced to almost completely bed ridden. No one will pay for it, except me and those who care for me. I have lost friends who couldn't understand why I was no longer able to get together. I struggled to take care of my own mother when she needed me most.

I am grateful that my doctor kept fighting for me, even when he was so frustrated with the insurance company who kept telling him there wasn't a human being he could speak with. I am angry that in less than a year we will be fighting for "approval" yet again. For now I am grateful to be back on something that is Starting to give me some relief and some hope that I might be able to live a somewhat "normal" life by my standards. I still don't know what it is to sleep through the night or to be pain free, but just being able to write this post is a HUGE accomplishment. I have missed all of you so much and have been touched by the messages of support I received, even when I couldn't reach back out to say so or to thank any of you. I don't know who, if anyone, is still reading my blog, but I hope to be posting again somewhat regularly, and I pray some of you have stuck it out with me, knowing how illness is.

Thank you for letting me rant and get my truth out there. Just speaking about it has helped me to release some of it. Thank you for caring about me and for all the prayers, the support and the love.

I hope to write about happier things in my next post. Until then, please know I hold all of you in my heart and I pray for your health and happiness.

More on Advocacy

I have written numerous times on being your own advocate, or getting someone to advocate for you if you are chronically ill. Recently I posted an article by Dr. Laurie Ferguson of Creaky Joints about the same topic. Judging by the response I got in comments and e-mails I certainly hit upon something that is a hot topic for all of us!

Because I am so ill myself right now, I have had to do a lot of advocating for myself with doctors. My mother is also ill, and because she is older and isn't able to be confrontational with doctors, I have to do most of the advocating for her as well. It is exhausting, but so necessary. No matter how much you may like your doctor, you have to look out for your own health. I am not saying that doctors are trying give us bad care, but they are overworked and fighting through the same broken medical health system we are!

I have a dear friend who has an elderly mom who has multiple medical problems. He has been trying to sort out what is going on with her. Some doctors will work with him easily, others are not responsive. She has been WAY over medicated since a recent hospitalization. Had he not continued to advocate for her, and fight for someone to listen, I have no doubt that results would have been deadly.

My mother will be needing surgery soon, and I will be in the position of making sure that things get taken care of properly for her. I am still trying to get my own surgery scheduled and sorted out.

Some of you wrote that you have wonderful spouses and family members who are willing to take on this role. Others wrote that they, like me, are not only their own advocate, but in many cases are caring for a sick spouse or parent as well. Not everyone has family close by or friends who are willing to step up and help out in this way. Believe me I understand this, because my own situation is like that as well. However, I have found that if you can be creative you can find ways of getting some of the help you need.

We all have to fill out those wonderful "privacy forms" each time we start at a new doctors office. Make sure that you know who IS willing to help, even if they aren't local, and make sure they are listed as contacts on those forms. I have had friends and family members who spoke to doctors in other states for me via phone or e-mail when I needed help. As long as I have given permission, most doctors are willing to speak with someone about my care. So if you have adult children or friends who would help, but aren't able to come to doctor's visits with you, this is a way they can be involved in your care if you need them.

I know for me the level of help I need waxes and wanes with the degree of illness I am suffering. I try not to involve people in all the little daily things, but I do call them in when I feel I need help.

Another way you might find of getting others to help is in researching medications or conditions for you. Sometimes just sitting at the computer or making a call to the insurance company can be overwhelming. This is another area where someone else can step in.

I know a lot of you resist the idea of letting people know you need help. Many people don't want everyone knowing the degree of their illness or disability. That is your right and your choice, however, if you want or need help, perhaps you have to look at who you are protecting by not asking for help when you need it. Again, over and over I have found that most of my friends and family WANT to help, they simply have no idea what to do. They are grateful when I give them a concrete task that helps me out. It makes them feel like they are doing something, and takes away some of the feelings of helplessness that they have having to sit and watch me suffer. It helps me because it is one less thing I need to do. It is a win-win situation.

I am not saying you need to share everything about your illness with every person you know. But you know who you can trust and count on, so start thinking about how you can get some much needed support without burdening or over-taxing your friends and loved ones!

You are worth taking care of and you deserve the support and advocacy you need!

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!