Monday, November 16, 2009
I will post pictures tomorrow (assuming Blogger allows me to login again, it seems to be giving me trouble lately) as well as try to post an update on what's been going on here. I miss all my bloggy friends and appreciate those of you who have written to see how we are doing while I have been sick and away from posting.
Wednesday, September 30, 2009
Saturday, September 26, 2009
I am developing either the flu or a good sinus infection, or quite possibly both. That isn't such a surprise given the physical and emotional stress I have been under, but it doesn't make being the caregiver any easier. It will be weeks before mom can drive again, so I am it for now. Yesterday for her follow up appointment we only made it by the grace of God as I was so nauseous that I was holding a basin to get sick in the whole way there and back.
Please continue to keep us in your thoughts and prayers, it is the best medicine we can both receive and we truly appreciate it.
Wednesday, September 23, 2009
Tuesday, September 22, 2009
I had an appointment EARLY this morning with a new specialist who came highly recommended by another specialist whom I respect and like. I have been having a lot of health issues and was really hoping that this doctor would be part of the answers I am seeking. Although exhausted I spent time last night making sure I had all of my information together in an organized fashion so I would be prepared today, because early morning isn't my best time.
I got to the appointment early since I hadn't been sent any paperwork to fill out and I wanted to be ready at the scheduled time. No one was there until after my scheduled appointment. I was finally able to sign in and received the appropriate clipboard full of nonsense we all fill out each time we start with a new doctor. I patiently filled everything out, adding my typed sheets of illnesses and allergy/medications. I even had my insurance card clipped at the top for the clerk. Eventually I was called back into a room where I waited about 20 mins. before a resident entered and proceeded to take a history from me and ask why I was there today. I pointed out my typed sheet of current complaints that brought me in. In fairness, the resident did her best to get a complete history and to try to hone in on the main issue I was there about. She left after about 45 mins. to go copy some records I provided her and to bring the doctor in.
The doctor poked her head in about 5 mins. later, looking for the intern. The doctor was a bit short and rude, but I gave her the benefit of the doubt. When she and the intern finally entered the room, the doctor made it clear that she was not happy that my mother was in the room with me. As a side note, I had asked my mom along for a couple of reasons; I needed the support and help physically getting there, I wanted another set of ears and also someone who could help to back up what I was saying because my mom and I live together so she is quite aware of what is happening with me and finally because my mom is looking for this particular type of specialist herself, and this would give her a chance to see the doctor at work and decide if she might be interested in seeing her.
The doctor was rude and impatient with both myself and the resident. She did an examination of me that literally had me in tears from the pain, and she not only ignored this, but told me calm down so she could hear my breath through the stethoscope! No "I know this may be painful, but I have to do it, sorry" from this one!
She then proceeded to fight with me about my illness, about medication I am on for another condition and to ignore my repeated requests that we deal with a specific issue I had come about that is concerning me.
Finally I had had enough and I got up off the exam table and said, "obviously this isn't going to work out, we clearly aren't going to be able to communicate or work together". I slipped on my shoes and watched as the resident picked her jaw up off the floor. The doctor was happy to see me go, she had made up her mind before walking in the room that I was a "problem" patient and she had no desire to help me.
Although this isn't the first such experience I have ever had, I have to say each time it happens I am truly upset. I feel cheated. I wasted my precious energy on this idiot. Now I am still dealing with the problem that sent me there, but I am also in terrible pain from her "examination" and I am exhausted, emotionally and physically, from the whole ordeal.
This is the type of thing that a healthy person could probably shake off quickly, but because I deal with so many doctors and have such limited energy it becomes upsetting and frustrating for me. I will have to try again with another doctor, but for today I am headed to bed in the hopes I can put the whole horrible incident out of mind and get some rest.
Monday, September 21, 2009
There were lots of talks on a variety of topics, but I wanted to mention in particular a few that I really enjoyed:
"Helping Others Understand Your Pain" - Karen Richards - Karen had great advice on not only speaking with family and friends, but also how to communicate with your medical team. I know I learned a lot, and I am a chronic pain patient and am used to speaking about this topic. Just goes to show you that you can learn something new each day.
"It's Okay To Say No: Building Healthy Boundaries" - Jenni Prokopy - A really terrific talk, whether you live with chronic illness or not, because, let's face it, we all need help setting boundaries. I loved how she managed to share her personal experiences and provide humor to help you cope. A perfect example is her "it's not my monkey" philosophy (a great tease because it's worth a listen just for this!).
"Finding A Heart Of Gratitude And Joy Despite Illness" - Maureen Pratt - Loaded with examples from scripture, this talk was inspirational without feeling unrealistic. This is another topic that we all struggle with lifelong, so it was great to hear Maureen's take on it and I learned so much. One point in particular that stood out to me was when Maureen said "How we behave and act toward our illness is going to affect how others see our faith". If that isn't a good reason to try harder, I don't know what is!
"Understanding How We Uniquely Deal With Difficulties In Life" - Georgia Shaffer - A terrific talk that made me think about how our personalities shape our reactions, which was something I hadn't given much thought to before. She provided some really concrete ideas of how to deal with others, as well as ways for us to cope with others reactions. A gem that I walked away with from Georgia was "Allow people to do what they are able or want to do, not only what you want or need them to do". That sounds so obvious, but how many times do we waste energy trying to get people to do what we want, instead of accepting that maybe we need to find another person to meet that need, or just being grateful the help that they are offering?
"Having Your Own Business When You Are Chronically Ill" - Lisa Copen - Lisa had to jump in and handle this conference when she had two last minute cancellations from speakers who had personal emergencies. I found her talk fascinating. She has done this herself, so she knows of what she speaks. She had terrific, specific advice that I haven't heard from other speakers, and this is a topic I have a real interest in. I don't know how she managed to do all she had to this week, in addition to jumping in and hosting conferences and being so prepared. She's my hero!
"Coping With Crises On Top Of Chronic - Chat With Two Gals Who Understand" - Jennifer Saake and Lisa Copen - This was a fantastic talk. I have never seen this topic covered anywhere else and it is so true of our lives. Just because we have chronic illness and each day is a challenge, doesn't mean we don't deal with all the regular crises that happen to everyone, from job loss, to the death of a loved one. Jennifer Saake is a wonderful speaker who gave a list of coping skills that anyone can practice and use to help them cope when life is overwhelming. Again Lisa and Jennifer both shared personal stories that help you to know they get where you are coming from and really care about each one of us.
I encourage you to listen to ALL the conferences, as well as to keep up with the Invisible Illness website as well as Rest Ministries. Many of the speakers have their own websites, including the speakers I have talked about above. I have links to Jenni Prokopy's site ChronicBabe on my blogroll, as well as Jennifer Saake's site Harvesting Hope From Heartache. Maureen Pratt and Georgia Shaffer also have their own sites, which have lots of valuable information.
Tuesday, September 15, 2009
1. The illness I live with is: Fibromyalgia, Chronic Pancreatitis, CFS, Endometriosis, IBS, Raynouds Syndrome, Arthritis, Adrenal Insufficiency, Blethoritis, GERD, etc. . .
2. I was diagnosed with it in the year: 1996
3. But I had symptoms since: Youth
4. The biggest adjustment I’ve had to make is: Not being able to work
5. Most people assume: I am healthy and happy
6. The hardest part about mornings are: The pain, stiffness and fatigue
7. My favorite medical TV show is: Hawthorne
8. A gadget I couldn’t live without is: My Computer
9. The hardest part about nights are: The pain and the loneliness
10. Each day I take 14 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: Don't have a lot of experience with them
12. If I had to choose between an invisible illness or visible I would choose: visible
13. Regarding working and career: I have none due to illness and this is extremely hard, not only financially, but on my self image as well.
14. People would be surprised to know: How much I hurt and how isolated I feel.
15. The hardest thing to accept about my new reality has been: That I can't be the person I wish I could be, or even have been in the past.
16. Something I never thought I could do with my illness that I did was: Take care of my mother
17. The commercials about my illness: Don't represent what it is really like to live with them
18. Something I really miss doing since I was diagnosed is: Being spontaneous, being able to do what I want, when I want without having to weigh the costs.
19. It was really hard to have to give up: My privacy and freedom
20. A new hobby I have taken up since my diagnosis is: Scrapbooking and writing
21. If I could have one day of feeling normal again I would: Do all the things I miss doing and treasure the memory of what it felt like to be healthy.
22. My illness has taught me: To be patient, compassionate and empathetic to others
23. Want to know a secret? One thing people say that gets under my skin is: "But you're too young to be so sick" or "But you look too good to be so ill"
24. But I love it when people: Really listen and make it clear that they love me for who I am now
25. My favorite motto, scripture, quote that gets me through tough times is: "Be kind, for everyone you meet is fighting a great battle" -Philo of Alexandria
26. When someone is diagnosed I’d like to tell them: Have hope, stay positive and get as much support from others as you can.
27. Something that has surprised me about living with an illness is: How much it affects every aspect of my life.
28. The nicest thing someone did for me when I wasn’t feeling well was: Ask ME what I needed and then did it, or just did something wonderful without being asked.
29. I’m involved with Invisible Illness Week because: It is important to raise awareness and to advocate for all of us.
30. The fact that you read this list makes me feel: nervous, but hopeful that you will understand me a little better for having taken the time to listen to what I have to say.
Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com
Monday, September 14, 2009
Georgia Shaffer - Understanding How We Uniquely Deal With Difficulties In Life
Maureen Pratt - Finding A Heart Of Gratitude And Joy Despite Illness
Both talks were wonderful and I took away a lot of information and food for thought. I was even able to call in and ask specific questions of both hosts, which I found exciting and extremely helpful. I really encourage you to "attend" the conferences or listen to them in archives, there truly is a speaker for every need.
Sunday, September 13, 2009
See ya there!
Wednesday, September 9, 2009
Monday, September 7, 2009
The truth is we can all learn from one another and be a support to one another. I hate to see nasty infighting wasting peoples valuable energy. Why does it have to be a constant battle of who is more miserable? It seems to me that there is plenty of misery to go around.
The blogs (and people) I am drawn to are the ones who are passionate about helping themselves and others. While it is certainly admirable to raise awareness and even funds for medical research about your illness, you mustn't lose sight of the larger picture. Numbers vary, but there are at least 76.5 million people in the US suffering from chronic pain alone. If we band together we are much more likely to be heard by the mainstream and to bring about change that will affect all of our lives in a positive way.
In one way I am lucky, if you could call it that, because I suffer from multiple illnesses, so I am pretty much accepted by most groups. But if you have one illness or twenty, it is still frustrating, scary, painful and life-altering.
As we head into Chronic Illness Awareness Week and National Pain Awareness Month, let's try to put aside our differences and focus on all we share in common. We all would like for people to understand us better and what we live with on a daily basis. We all would like to see better health care that helps to prevent illness instead of just putting a band aid on a huge problem. We would all like to be treated with respect and dignity and to raise awareness. If we focus on the things we all share in common, we can accomplish so much good, and whether that good involves a "cure" for my particular illness or not, that's a legacy I want to be part of!
Friday, September 4, 2009
I happen to live with my mom. We are caregivers for one another, each one doing what we can for the other as our own health problems allow. It is all to easy for me to forget the terrible toll it takes on my mom to watch me when I am in pain, or scared and frustrated, or facing yet another painful test or procedure. She is first and foremost my mom, she loves me and wants to protect me from all bad things. That isn't possible when someone is chronically ill. As much as we might wish someone could wave a magic wand and make things all better, it isn't a reality. While I know this, and of course my mom knows it on an intellectual level, I can see the pain in her eyes when she can't "fix" things for me. Sometimes I get angry, thinking why does she need to fix this, why can't she just do what I ask of her right now and let it go. That's the selfish part of me, the one who hurts and wants her needs met NOW. But if I step back and look at my mom, I realize that my being ill has changed her. She looks older and more frail, the result of lots of worry and sleepless nights more than product of aging.
I guess what I am trying to learn, and maybe to pass on to others, is that we have to be very careful to remember that the people who care for us, who are our caregivers, are people too. They have feelings and emotions about our illness that are their own, and they have a right to those feelings. They have a limit - physically and emotionally and we must always be mindful of that limit and not push them beyond it. If we want others to respect and understand our boundaries, we have to offer that same respect and understanding back. I am trying to look at things from my mom's perspective more often. I think about how scared and frustrated SHE must feel watching me suffer and not being able to do a lot to alleviate it. I find myself in awe of her strength and love, the kindness she shows me with all the little things she does for me everyday.
Whether your caregiver is your spouse, your child, your friend or even a hired helper, you need to take a hard look at the PERSON behind the role and acknowledge their dignity, their struggles and their feelings. Put aside your own needs, even if only for a few moments, and be grateful for your caregiver. Say a prayer for them, ask God to grant them strength, peace and to bless them abundantly for the loving care they provide. You will find yourself having a much better relationship if you allow for honest communication between yourself and your caregiver. Make sure that the person who helps you gets some time and attention for themselves.
During my recent flare my mom was home with me round the clock the first week, and I finally had to order her to resume attending her senior center activities. She needed to have someplace she could go to get away from the situation for a little while. Somewhere that she could meet with her friends and talk, or just laugh and do something fun for herself. It wasn't doing her, or me for that matter, any good for her to sit around the house day and night watching me hurt. I felt better when I knew she had something good to look forward to, and I think she felt better knowing she could take a break from caring for me and just be herself, not my mom, not my caregiver, just the woman she is.
It is so easy to take our anger and frustration and hurt out on the people who are closest to us. It is easy, but so dangerous. These relationships are much too important not to nurture. Take a moment today to think about how hard your caregiver works to make things better for you, and then make sure you let that person know how much you appreciate them and all they do. A little kindness goes a long way.
Tuesday, September 1, 2009
Tuesday, August 25, 2009
Monday, August 24, 2009
Saturday, August 22, 2009
Friday, August 21, 2009
I wanted to mention that Change of Shift is up at Emergiblog. If you haven't checked out this blog carnival before, you might want to give it a look. There are always interesting posts about all things medical, and you get opinions from patients, doctors, nurses and all sort of people in the healthcare field.
Invisible Illness Awareness Week is coming September 14-20, 2009. This is a wonderful series of programs that are free, available right from your computer in the privacy and comfort of your own home and jam packed with terrific information. I began blogging as a result of last years conference on blogging, and will be providing a guest post this year! Please make sure you check out this wonderful site and plan to "attend" as many of the conferences as you can, or at the very least download them and listen to them at your leisure!
Jenni Prokopy of ChronicBabe has not only begun podcasting but has started a forum site on ChronicBabe where you can go and connect with others to talk about all sorts of things illness related and otherwise! Jenni really helps inspire me to remain a "babe" ill or not, and I hope you will check out and join the new forum as well as listen to her latest podcast interview with Laurie Edwards. Great info and support, free for the taking - you can't beat that!
I am currently trying to spend some time focusing on my writing. I have several projects in the works including a magazine article pitch, a fiction novel and some memoir work. I went to my writing group yesterday and was so inspired by all the other great writers in the room, as well as our facilitator, Barbara Novack, who is Writer-in-residence at Molloy College and a published author and poet. I am so grateful to this group for the support and advice they give me, and I wish everyone had a group as good as this one to go to. Barbara Novack, in conjunction with the English Department at Molloy College is sponsoring a series of Author Afternoons at the college. If you live in the greater NY area and are interested in attending you can find more information at the college website.
Wednesday, August 19, 2009
-Jean Webster, Daddy-Long-Legs
It is all too easy to get caught up in the negative and think of all the things we can't control, the things we can't do, the people we can't change. But, how about trying to turn that thinking upside down and looking at all the things that DO work, you CAN do something about - the pleasures that you already HAVE each and every day? It's easier to have a pity party and blame the world and complain that things never go right. Yes, it is easier, but it is also far more dangerous. When you overlook the simple pleasures you stop being able enjoy them. The quote talks about making a big deal out of little pleasures. I am not married and I don't have children, so my pleasures might be different than some of yours, but we ALL have them if we choose to look. Some of my pleasures include things I have control over and many of them include things I have nothing to do with. An example that springs to mind for me immediately is the beauty of nature. I can be on a walk in my neighborhood and be stopped in my tracks by a beautiful flower, an interesting tree or leaf or a particularly playful squirrel or bird. Just the other day we had heavy rains that left deep puddles on the sides of the roads. I was pulling my car out of the driveway and I noticed three little sparrows splashing around in the puddle. They were so cute as they bathed in that puddle that I simply stopped for a moment to enjoy watching them. It wasn't earth shattering, it didn't cure me of my illness, but it made me appreciate the beauty that is all around me if I take the time to notice it.
Another example from my own life is something I call "gratitude for what works". When I am feeling particularly frustrated by my illnesses and like nothing works right in my entire body (pity-party anyone?) I sit myself down and focus on all the things about me that DO work. My eyes are really good, I don't even need reading glasses (yet!!). Although it hurts, I can walk all by myself, something many people can't do. Most days I can eat and drink most things, and after having met many of you who can't do that due to illness I am so grateful for it I try to always remember to be thankful. I have days where my pain makes it impossible to eat and I can barely drink, so the days when my digestion is working are truly a blessing and a pleasure I enjoy and celebrate. There are many other things, such as my brain, that work quite well, and I choose to focus on these to remind myself that there is much more that works than that doesn't.
Your simple pleasures might be the smell of your daughters hair right after her night time bath, the feel of the sun on your skin as you work in your garden, the sound of your favorite song on your IPOD as you commute to work, the look on your loved one's face just as you lean in for a morning kiss. Whatever your pleasures are, be thankful for them, celebrate them and make a big deal out of the "little" things that make life worth living. All the money in the world can't buy any of these things, and yet they are my most precious possessions.
Thursday, July 30, 2009
We live in Floral Park, the town in which the family who was killed on the Taconic Parkway lives. The last few days have been a time of great sadness in our community. The only good thing that happens at a time like this is that you realize all the blessings you have. I am blessed to still have my mother with me. I pray for the families who no longer have their children, their mom and their dad there to hug at night. Please keep them all in your prayers and hug your own loved ones tonight and be thankful for all you do have. Illness can't take those important relationships away from us!
Wednesday, July 29, 2009
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.
Monday, June 29, 2009
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.
Friday, May 29, 2009
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.
Wednesday, May 27, 2009
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!
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!!
Monday, May 25, 2009
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.
Wednesday, April 15, 2009
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!
Monday, April 13, 2009
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!
Sunday, April 12, 2009
Wednesday, April 1, 2009
"I am proud to introduce the Avon Empowerment Necklace. Thanks to you, 2008 sales of the empowerment Bracelet raised over $1 million for the UN Trust Fund to End Violence Against Women and generated more than $2.5 million in additional funds for local programs in the US and globally to help victims and their families. Purchase the necklace now and let's help stop the violence - - together."
For more information you can visit avonfoundation.org.
The necklace costs $5 and 100% of the profits from its sales go to the fund. I don't work for Avon and I am not related to anyone who does. I just wanted to point out something good when I saw it. I respect the fact that a large company is taking violence against women seriously, and bringing much needed attention and funding to helping to stop it.
I know times are tough and we all have to think about how we are spending our money, even a spare $5. I love the idea that I can buy this necklace and not only will my purchase price go toward something I support, but I can use the necklace itself as a tool to bring attention and advocacy to an important cause.
Friday, March 27, 2009
Please take a look at this months entries and visit some of the blogs listed for interesting information.
Wednesday, March 25, 2009
Dr. Laurie's Healthcare Battle Plan
Shuttling between several doctors? Dr. Laurie explains exactly how to protect yourself.
A client of mine isn't doing so well. I'm watching her cope with a new round of doctor visits, tests, questions ... and fears. She is on the merry-go-round of one visit leading to three new appointments with different physicians -- each one working to diagnose and treat her many symptoms.
There is something different in her approach though, and it is making me think.
She seems to be doing most of the work.
She is taking each opinion, each "recommendation," and she and her partner are sifting through the data, doing some research, and choosing what seems best to pursue as a healing option.
In the not-so-distant past, she -- and many of my other patients -- would have relied on a doctor to choose a path.
He (and The Doctor was almost always a He) made the decisions, and was The Omniscient Healer. We looked up to our doctors. We relied on their experience and wisdom -- and hopefully on their caring concern.
The landscape of medicine has changed with lightspeed ... and many of us are still catching up. We only have minutes with our physician. We are given options -- not decisions. And there is an often unspoken expectation that we are the ones in charge.
That's the good news -- and the difficult news, isn't it? We have to adjust to this new way of doing things at a time when we feel most in need of someone to lean on, someone who will take care of us and make it all better. But we also know that this is unrealistic -- a fairy tale that never quite fits the situation.
Our work is to help ourselves grow up a little into this responsibility and develop some ways to adjust and use our new power most effectively for our own healing.
I'm watching my clients and here is what I've learned:
The good news is, if we're in charge, we get to decide.
OK. The doc may recommend certain surgeries, or a certain course of medication. But once we do some research -- and ask around -- then we choose. You and your body are the best judge of what works for you. You're in charge -- and you know what works best for you.
- Speak up.
- Speak out.
- Tell the truth.
- And be The Boss.
It's empowering and it is what will make you feel better.
Get an advocate.
Don't try to keep track of everything or make decisions by yourself. Again, this is good news -- partners make us stronger. They help us feel better.
If it isn't a family member, take a friend. If you don't think you have a friend that close, then get to work to make sure there are some people in your life you can count on. This is a two-way street and it is part of healing.
Write everything down.
Get copies of tests, records, whatever. Doctors will make mistakes. You need your own written stuff.
Nobody else is. This means a written list of every medication and herbal thing you are doing. Make sure every doctor, every assistant, and every pharmacist sees it. Every time. Don't assume they "know" -- even if they have seen your list, they have often forgotten.
Have second opinions. Use alternative modalities. Use research.
The internet is wonderful ... and awful. Go to reputable sites, and double-check what you learn. Reach out to other patients, nurses, and support groups. Be informed. Then practice making decisions.
This is a new way of being for most of us. It steers us in the direction of responsibility -- instead of feeling passive or victimized.
Once you begin to practice this, it's heady, intoxicating, and, yes, sometimes a little scary. But being a grown-up is always more scary ... and more fun -- because you get to set the course. You get to decide how late to stay up, what to have in the fridge, and how to spend your money.
Should your health care be in any one else's control?
It's your body. Your side effects. Your pain. Your healing. Your life.
I'm rooting for you.
To send Dr. Laurie your thoughts:
- add a comment below
- or e-mail her by clicking here
Another thing I have been going through is what my dentist calls "remodeling" of my jaw. I had to laugh when he said that, I mean what person with chronic illness doesn't feel like their whole body has been remodeled (and not to their liking!). Seriously, I had a tooth extracted back in February and have been waiting for the site to heal completely since (see the above paragraph about how we don't heal quickly!). Last week I noticed a very sharp piece of something, which felt suspiciously like bone to my untrained finger, jutting forth from my gum at the site where the tooth had been extracted from. Sure enough, that is exactly what it is. Evidently when we lose a tooth the jaw "remodels" itself to adapt to the loss and shape itself accordingly (aren't our bodies fascinating things?!). Anyway, this piece of bone will eventually make its way out of the gum and out of my mouth. In the meantime all I can do is wait and use warm salt water swishes to help it along.
So my absence from the blogosphere has been due to numerous health complications that have drained me physically, emotionally and creatively. I appreciate your patience with me and will try to get back on track as my health allows.
Tuesday, March 10, 2009
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.
Monday, March 9, 2009
- A cup of hot tea, preferably in the morning and evening, but at other times of the day as well
- A reasonably good nights sleep the night before
- Something to look forward to that makes me want to start my day, it can be plans with a friend, a hobby or craft or even just a beautiful day
- A piece of dark chocolate
- A personal letter, e-mail or even a kind comment on my blog
- The love and support of family & friends
- Some quiet time to myself in which to pray, relax or read
- A good laugh
- A full tank of gas and a car in good running condition
- A sense of gratitude for whatever health I have that day
Now it's your turn, what things do you consider essential to a happy day? Come on, I'm waiting to hear. . .
Tuesday, March 3, 2009
All of these photos were taken at the Sunken Forest on Fire Island in New York. I had posted some beach photos from there and some of you expressed an interest in learning more about the Sunken Forest.
". . .What he [Obama] didn't quite explain to me, and maybe I'm a little retarded about this is. . ."
Those of us who suffer from chronic illness know all too well how awful it feels to be judged unfairly or labeled by others. We are called weak or lazy for not being able to do things healthy people can. We are thought of as crazy or hypochondriacs because people don't believe in an illness they can't "see".
We who blog use words everyday to express our thoughts and feelings. Let's all make a pledge to stop the use of the R-word and all other hateful and hurtful language. Please head over to the Special Olympics website and take the pledge, grab the badge and blog about this campaign. This is one of the rare opportunities we get in life to make a difference for the better! Please join me today.
Monday, March 2, 2009
I realize that what I am about to say can apply to healthy people to a degree as well when you are talking about such large amounts of snow, but allow me to rant anyway:
- On a good day I can barely lift groceries to bring them in from the car, so you can imagine that shoveling heavy snow isn't possible for me.
- Of course the blizzard had to hit on the day I have an appointment with my pain management specialist, and I am having trouble with my medication so I needed to see him today.
- This being New York, nothing but school closes for snow, so the doctor's office wasn't exactly thrilled that I cancelled my appointment, despite the fact I couldn't get out my door, no less my driveway.
- My landlord is supposed to have snow removal service as part of the price of our rent, however the service is spotty at best. Sometimes they arrive the day AFTER a storm ends sometimes they don't arrive at all.
- My mother and I are stuck in the house until we can find someone to shovel us out, or the snow removal people make their appearance.
On the flip side, I am grateful that we have a warm roof over our heads. Because we had advance warning the storm was coming we have food to eat and will be alright if we are stuck indoors for a few days. I know that many people aren't so blessed, they are cold or hungry or worse. So I am going to try to look at the part of my glass that is half full and not the empty part. Harder to do when I am in pain, but good practice for me, especially in this season of Lent. So for the moment, thank you God for supplying me with another lesson in humility and thankfulness, please help me to use it to learn how deeply you love me and care for me, even when I think I am forgotten - You never forget me!