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.