What to do After a Chronic Illness Diagnosis - some tips to staying afloat

So, you're sitting in your doctor's office after weeks, maybe months of not feeling great and you're told you have lupus, or kidney disease, or diabetes, fibroneuralgia or any number of other conditions and you sit stunned and speechless. Your doctor might ask, if you are lucky, do you have any questions?  But, you draw a blank and sit staring at the ID bag on his or her white coat.  You happen to catch a few words such as specialist, bloodwork, medication, tests when a rush of cold air fills the room and you come to for a brief moment. You see the white coat stand and then turn and leave the room. As you slowly come out of the mental fog, questions and concerns pop into your head,  Can I still work? Will I recover? What about my sex life? Will I need surgery? But your doctor has gone onto the next patient. You get dressed, walk the hall to the check-out desk, pay your co-pay, if you have insurance, make a follow-up appointment and then the receptionist hands you the number for a specialist, and you leave not sure what just happened.
Here's what you do next:

Tip 1: Find the nearest deli and order your favorite piece of pie!
Tip 2: Don't panic even though you find it difficult not to. Breathe and stay focused.
Tip 3: Call a friend
Tip 4: Call your doctor's office and make a follow-up appointment to discuss what all this means and ask any questions you didn't get to ask during the initial visit.
Tip 5: Find a support group or organization that has information about the illness
Tip 6: Remember, you are most likely going to experience a new kind of normal
Tip 7: You are not your illness
Tip 8: You can still have a life even if it has limitations
Tip 9: CALL ME! 310-922-3957
Tip 10: EMAIL ME: SEALOVERV@GMAIL.COM

Depending on the diagnosis you receive, you might need to see specialists, undergo more testing, hospitalizations, change in diet, mood swings, sleep changes, etc. Knowledge is important so is attitude. Watch what messages you feed your brain. If you have a tendency to be a pessimist, chances are you will remain one, but practice seeing the glass as half full; it will save you!

Who's Looking Out for You Baby?

Have you ever had the experience where you felt like YOU had to come up with the answers to your health condition? Where you had to problem-solve and do all the research because, basically, your doctor just handed you a prescription and said, "see you in 3 months?" I don't know about you, but I find that totally frustrating. My doctor said to me once "stay off the internet." That is usually where I do all my investigating. I learned recently that I had a stomach hernia.  But that was all I was told. Non of my doctors said anything more. They didn't tell me how to care for it, what to do and what not to do. Whether or not it would grow or what symptoms to look for if it were to be getting worse. Ironically, a week or so after that diagnosis, someone from Medicare called me and asked if I needed any health information. So, I asked them about the hernia. They sent me a printout with interesting information about things I should and should not do such as eating small meals, sleeping with my head elevated and drinking lots of water. Information is out there and we don't always get it from our healthcare team. So, what I'm saying is, don't always take what you are not given and walk away. Either tell your doctor you are not leaving until you get the information you need and want or look to other sources to find it. Though make sure where you are getting it is reliable. I figure the Medicare doctor knew what she was talking about and I could trust that information.

Be an advocate for yourself! Speak up, as my mother used to say. Know your choices and don't settle for less!

In health and peace,
Victoria

Women, Food & God - a book review

I'm reading a new book titled Women, Food & God by Geneen Roth. If you've ever suffered from or continue to suffer with emotional eating, she shares many wonderful thoughts, ideas, wisdom and laughs on not only her own journey with emotional eating, but of those who attend her retreats. Roth is new to me, but, as I soon found out, she has written on the subject of emotional eating for may years. Feeding the Hungry Heart, When Food is Love, Breaking Free from Emotional Eating and many more. She talks a lot about why diets don't work, and I couldn't support that idea more. When we diet, we for the most part, don't look at our relationship to food or to the feelings that trigger our food issues. All we are concerned about, is dropping the pounds and looking good. We don't go deeper into what is behind what drives us to over eat or eat the wrong foods or have cravings. I try to ask myself when I'm craving something, what am I really craving right now? Comfort? Excitement? Not to be alone? And what would happen if we actually sat with those feelings? We want a quick fix. We don't want to go deep into our feelings, because hey, what might be down there?

She reminds us of the importance of being in the here and now when eating and recognizing and feeling the feelings that come up instead of heading for the refrig to mask them with food. We have a whole arsenal of feelings inside of us though we tend to not want to feel many of them, mostly feelings such as, loneliness, fear, anxiety, sadness and or boredom. We'd rather eat a bag of chips, Oreos or ___________you fill in the blank, then feel the feelings. Roth reminds us that feelings won't kill us. We might cry, we might feel uncomfortable, but they won't kill us. Here is where I recommend keeping a journal. Write your way through the feelings. Collage your way through the discomfort. Turn on some music. Call a friend. Go for a walk.

She writes about being aware of the Voice. That voice that has been present inside of us since our little brains could make sense of them. The negative and positive messages that still scream in our ears. The voice that maybe says, "You're not wearing that outfit are you?" Or, "You're not going to eat that are you?"And how these statements can trigger an internal reaction or thought about ourselves and inturn sends a message about ourselves to our core. She stresses the importance of listening to our bodies. Where in our bodies to we experience a feeling? How does it feel? What shape is it? What color is it? I use this a lot with art therapy when I ask a client to create an image of what they are feeling in their bodies. We live so disconnected to our precious bodies that we stay in our heads where all the lies dwell about ourselves. The lies that say, we our too fat too thin, too this too that.

I especially like The Eating Guidelines, which include things like: Eat when you are hungry. Eat sitting down in a calm environment. Eat what your body wants. Eat until you are satisfied. These are just a few. I recommend you pick up the book at the library and savior Roth's wisdom and expertise on the subject. Until then, eat mindfully.

Trust - what is it good for....everything!

There have been times when I was right and my doctor was wrong, and I saved my life. I try not to see it as an unfaithful partner who I can no longer trust, but as a human error. Not intentional or ego-driven like an affair, but, as a miss-interpretation about what was happening to my body. But, it is still hard to continue to go faithfully down the road to wellness together wondering if it will ever occur again. There is always some doubt in the back of my mind whether he (we) are making the best and right decisions. Should I switch to a new medicine protocol and face a new set of side-effects when I’m familiar with the ones I have gotten to know, skin cancers and all? Or, do I hope on a new train traveling down a new unfamiliar track, where, my skin cancers may subside, yet, there will be a new truck load of side effects to live with? So, how do I trust thee? Let me count the ways. I trust that you will know how to deal with these new side-effects and that you will know whether we should return to what is familiar. I trust that you have the latest information on these new medications and what I might be up against. I trust that if I take this new medication and something unforeseen happens to me, you will not throw up your arms and go, “wow, we’ve never seen this before.” This is what I trust. I also remind myself you are human and error is possible.

As an active fifteen year old, how was I to know that one day I would wake up feeling nauseous and tired and that the body I had trusted was breaking down before its expiration date. I trusted that if I took care of my body and I didn’t smoke, didn’t drink or use drugs, my body would stay strong and fit until old age. At fifteen I probably thought the worse thing that could happen to me was falling on the ski slope and breaking a leg. I guess I did not give much thought to teenagers getting life-threatening illnesses, falling into comas or contracting hepatitis. Those kinds of things happened to older folks.

So, where am I with trust today? That is a difficult question, but what that I believe helps me is that no matter what, I believe I will be OK. Even if I get sick or I'm in pain, I have a deep-seated belief that, this too shall pass. Sometimes, it's hard to write this truth when I see all the suffering in the world, but it has worked for me to hang onto this belief. It really comes down to what works for you. What do you believe about living with a chronic illness? What do you trust and what don't you trust? It's important to know this.
Be well in body, mind & spirit!

Trouble-Maker or Advocate?

At a recent doctor's appointment, I shared with my MD that I had looked up a medication on the internet. His reply was, "Oh, you're one of those who researches information on the internet. I hate when patients do that." He was saying it in a joking way, but I knew there was some truth behind what he was saying. Doctors don't want you to me informed, at least most of them would like you to come and not say a word. I believe they want you to nod yes and go along with whatever they say and be totally compliant. I figured after I left the treatment room, my doctor would put a big red mark in my chart stating, "Trouble-making patient." I learned a long time ago to speak up for myself, which means, to ask questions, know my choices and options and to do my own research. Whether it is concerning a new medication that I'd like to know the side-effects of, the pros and cons of a particular test, or the long-term effects of treatment, I want to be informed.

I asked my doctor if he would prefer if I just nodded my head yes and did everything he suggested without asking questions. He smiled and said, "no." I'm not sure if this was an honest answer.

So how do you become an advocate for yourself without being labeled a trouble-maker? It's a thin line. I believe if you know what you are talking about and you've done your research, you will gain your MD's respect. Responding with statements such as, "from what I understand, this medication..." Or, "Is there any reason why I'm not able to take the stress test on a treadmill versus a medication-induced stress test?" Keeping calm when speaking with your MD and not coming from a place of anger is also recommened. I suggest having your questions ready before hand, so you are prepared when you walk into your appointment. Sometimes it's difficult to do this, so I believe it is ok to say, "I'd really like to think about this." I am by no means suggesting that you not follow your doctor's recommendations, but what I am suggesting, is to take part in your health care decisions. To know your options and what choices you have. This way, you feel you have some power in what is taking place with your care and less like a victim.

As far as the red mark in my chart....well, I might have to think of that more as a mark of courage than as a negative branding! The more we speak up for ourselves, the more we can have control and a voice in our health wellness.
Be well in body, mind & spirit!

Creating Mandalas for Healing...

relaxation & reflection

A weekly expressive art group for women who live with a chronic health condition
The word Mandala, comes from the Sanskrit language meaning “sacred circle.” The use of mandalas throughout time have been used by various cultures for meditation, self-reflection, healing and as a symbol for the self.
In this weekly group, we will create mandalas from various art mediums including oil and chalk pastels, markers, colored pencils and collage. The workshop is meant to provide a relaxing and reflective experience that supports and promotes healing.

No art experience necessary.

Saturdays: February 20, March 20 & April 17th 2010
10am - 1pm

WEST LOS ANGELES LOCATION

$25 Per session

SUPPLIES PROVIDED

Facilitated by Victoria Van Zandt, MA
Registered Art & Marriage & Family Therapist
Intern #52087

No art experience required.

Please call for more information and/or to participate in the group.
Call 310-922-3957

Supervised by Gwen Lotery, MFT #37140

Yes, there is a life after a chronic illness diagnosis

Welcome to my blog! I've wanted to begin writing about living with a chronic health condition for a while and blogspot will be my home for venting, sharing info, support, and much more. Here's some info about me: I've lived 35 or so years of my 52 year life with kidney dis-ease. From the time I was first diagnosed with renal failure at age 15 to now, where my third kidney transplant will be 19 on August 16, 2009. That's right...bring out the birthday cake. I won't just be writing about kidney dis-ease, but about living with any chronic health condition. I will share with yo what I've learned along the way about caring for myself, dealing with the healthcare system, alternative medicine, do's and don'ts and much more. I invite you to share your stories, lessons learned and anything else you feel is relevant to living with a chronic health condition. I don't claim to be an expert, only a woman who has traveled the sometimes lonely and crazy-making road of living with an ongoing health condition. Also know, that I will include some humor, because if you don't have that...well, the road will be more difficult at times.

Let me first share some of the lessons I've learned along the way:

• Move your body even if you're sitting in a chair...move it.
• Don't look down the road too far.
• I live by the saying one day, one minute, one hour at a time.
• Remember to breathe
• Ask questions,
• Educate yourself about your condition
• Don't let doctors intimidate you
• Most importantly, keep your wit in tact...it will save you when a pill can't.
• Don't be afraid to reach out, find a support system and read, read, read!
• Know side effects of medications.
• Have a creative outlet and take a break from the craziness.
• Oh yes, and be kind to yourself, your body, your spirit & mind...it needs you.

Hang in there, be strong, and know that this too shall pass.

Be well in body, mind & spirit.