OK I was Blue.....get over it.

Sometimes when we are blue we feel we need to hide it or share it with the world. Mostly I hide it but yesterday I shared it. I feel OK with that. For anyone uncomfortable; "get over it". You try to live with a chronic illness and pain and see how you like it. Really though I do feel better and it helps to vent. I know too many people who bottle up emotions and I see how they come bursting out in negative and self destructive ways. So free yourself and feel what you feel, and express it somehow with out judgment. Blogs are great ways, but know people are watching.

I have a funny question. Do you woman of my age and older have very close veins? Otherwise known as varicose? Do they bug you? Hurt? Or are they small spider ones which simply reflect your maturity, wisdom and heritage? I had a friend once send me a flyer for a Dr. who removes them and then I read Dr.'s report stating I had them. I asked my husband and another friend and they could not even see them. So I figured it could be a vanity issue. maybe people see things if they are threatening to their own self image? maybe I just focus on what is important or... are they a real health issue? NO........Not if they are tiny, microscopic and almost un-noticeable. Like crows feet, no one notices unless it is an issue for them. Age should be celebrated. Now if you have painful, bulging veins which need to be removed for health reasons and pain; go for it. My X had them so bad he looked like those steroid guys all pumped up and it was a medical issue. Shows those age marks with pride is my motto. Hell, I still have acne so what do I have to complain about.

So I guess I am back to my practical and slightly humorous state for the moment. Next entry is the beginning of my memoirs. After losing them on computer I decided to re-write with a humorous twist. Things I felt should be secret I no longer care to hide. The gloves are off. No names mentioned but stories will be told. Mine. Let me know if you want left out. I may or may not. HEEEEEE. Just kidding. I respect peoples right to privacy and it might not be written as real but as closely based on reality.

Peace out.....Word.......Love

ups and downs...whining

Today I want and need to bitch and whine. I have spent two days in bed this past week and feeling very weak,tired and have pain which is a level 5 but for most others it would be much higher. When one is in chronic pain the number system of grading pain levels does not apply, which sends a mixed message to the Dr.'s. They hear a level 3-5 on the particular day you are in clinic and consider it "mild", but what they do not take into consideration is that the pain can go from 3-8 in an hour and when one has a higher tolerance this number is irrelevant. I read the Dr.'s reports and they tell me the lupus is inactive, and thanks to the daily dose of toxic meds which control it, I am "basically" symptom free. What they do not take into effect is the damage and activity I feel no matter what the lab tests show. This has been proven. There are times when labs look terrible but we patients feel great and vise versa. Most days I see our Dr. I do feel OK and I put on my happy face so they do not think I am weak or a whiner. That really irritates people.

So why do I want to bitch and complain? I feel it is harder emotionally with the lupus being virtually inactive, while on a ton of drugs, than it is to be in a full fledged raging flare. At least when I am in a bad flare I can validate how I feel. When I am in limbo and the meds are keeping the activity generally low I feel that Dr.'s and family-friends assume I am well and therefore can go back to normal activity and that all is good. This is not true. Plus the damage that has been caused to bones, skin, kidneys and other organ systems is already done. There is nothing to be done about that. I can not take pain meds, which would make life so much easier, and on the occasion I bite the bullet and do take pain meds I suffer through the hellish side effects, but also realize what it is like to be virtually pain free. I guess even I do not realize how much pain I feel until I numb it. But what is more frustrating is how, even experienced Dr.s, will say I look so healthy and give me a clean bill of health and call my pain or symptoms "Mild"....Mild to who? I have a friend who is a Dr., not practicing, and has lupus. She did not understand what patients went through until she had the disease herself. What a teacher she has been. She knows that Dr.'s really can never fully understand what we patients feel. It may seem mild in comparison to life threatening symptoms, but it is not mild to spend two hours napping daily and at least two days a week in bed, having sleepless nights due to pain, feeling so tired at times I can not walk, all the nasty side effects and damage from toxic drugs and so on. The emotional toll of being in this limbo is worse than facing death. The ironic part is that I want to be seen as healthy but I want my Dr.'s to truly understand and write it down as it is not just report that day I see them but the entire picture. Take the time to acknowledge spikes of pain up to 8-10, sleeplessness, weakness, pain upon doing anything physical, bone decay and pain as a result, missing out on much of life's experiences much of the time and trying to look good and healthy because that is what our society expects. We want and need to be heard and understood not blown off. I have great Dr.'s who I respect and care for, but I still do not feel they understand. They are also victims of insurance and cost effective medicine. They have fifteen minutes to spend with each patient. That is absurd!!!!

I want to be healthy and positive but I also want people to know what I go through so they can empathize a bit. Imagine having the flu your entire life with arthritis and bone loss. Imagine wanting to sleep and forcing yourself to get out in the world with a smile to be a positive role model and to be "normal". Just imagine for a moment then tell me if it is "Mild".


Thanks for listening......whoever reads this. No worries I will be happy and feeling good soon, just let me feel it.

writing again

Yes I have been on a long sabbatical from writing after losing much of my "book' after a couple computer crashes while backing up memory which torqued out the back up drive as well. Online back up works well too but I must admit to still being bad at it. Contrary to popular belief I am not a geek when it comes to computers. I now write most of my important info online and/or back up on paper. Plus one must feel the words dripping off the finger tips like melted ice cream at a July pic nic. I have not had that feeling much lately, perhaps due to all the changes with living in NC temporarily, not being out in our garden and nature or swimming in the lake for the summer. My clock of routine is off balance. My notes and "stuff" is in Michigan.I do see a rebirth for me and I hope you encourage me to write as well.

I work with a "chronic pain and illness" therapist during times I need a little boost. He is great at making everything seem normal and reminding me of my need for perfection in life. "If I will not be perfect then I will not do it". What is that all about? I wonder how many of us underachieve to a degree at some point in our lives when the things we were once great at we no longer find our glory? I was more active, stronger, smarter, more energetic and more creative just three years ago. This is not due to age in total. It has more to do with the cards I have been dealt or picked for myself with lupus, chemo, meds, and bone loss-pain. I see a need to rebirth some of the old "younger me". I am begging to find minuscule pieces of her emerge as if awkwardly cracking out of a hard shell into a new world with memories of youthfulness,energy and zest for life. Shades of her are there lurking in the shadows around corners of cooking,cleaning,shopping,computering,entertaining, advising,advocating,designing,running errands and making all my weekly-monthly appointments around health and wellness. Hell I don't even have pets,kids or Chia pets. When we had Jake dog for 7 years he was a catalyst for me to get out and walk in the woods a few times a day and play toss etc. Now the ball is my hands for me to initiate action. How blessed I am to be able to walk (stumble) and even consider doing the things I now do. Two years ago I did not know if I would have the physical or mental ability to do much of anything. Renting movies and the food channel became my link to the outside world and unreadable pages of scribbled notes are proof of the recipes I pretended to be preparing,books to write,videos I wanted to rent, music to record or documentaries to see. It was like having a stroke. Hard to explain but things were not firing and energy levels were available for survival only. I was there but my body could not completely prove it.

Now is a new day for sure. As I crawl into this new skin I see how it only takes a little initiation and motivation to reach a little farther and dream a little more. That will eventually turn back into action in a healthy way. I might end up in a wheelchair one day but not now !!!!!Perhaps sometimes the little red wagon Douglas bought me will be seen fluttering to the farmer's market either with me towing or sitting on the end being towed. Either way I have a means to move about the planet as I see fit. Hang gliding,motorcycles,heavy farming,extreme dancing,sunning at the beach,hiking a tall mountain and more are memories....and good ones at that, but not my reality for now. I must consider saving what bone I have left for healing at best and maintaining at worst. I truly believe the worst is behind and I am strong as hell for whatever the future holds. Indulge me in the healing and rebirth. If you live close ask me to join you in a class or take a workshop. Invite me to read a book with you or join a club. Show me how to knit and go for a nature walk. I am open and sometimes need a simple invitation. I will tell you of I am not up to it, but the asking makes me feel strong,smart and healthy again.

PS...I joined a local farmers group. Every Thursday they provide fresh-local produce of what is in season. We buy a season (May-October) of shares and enjoy the growth of our hard working farmers in the Asheville area. If you have one in your area I suggest you join. Or if you have enough food from your garden to provide a box a week to a couple families do it. It is a great way to support local economy and organic gardening while avoiding the high costs of having food shipped in from Mexico or China. Helping food kitchens is another way to share the abundance of local farming. Do not forget eggs,dairy,flowers,herbs,honey,maple syrup,cider and meat. When you get involved with local economy you save your community from being a Super Wall-Mart "Ho". Plus it is fun for kids to learn about farming and natural elements in life. If none of the above is an option there must be a farmer's market or local farmer nearby with a little table by their drive with a few tomatoes or peppers sitting in the sun for "donation or contribution". What fun !!!! Right now we have a patio garden with herbs, tomatoes,greens and will ease into more. We could feed ourselves off one small patio. Summer reminds me of summer visits to West va. and of our garden at the farm and cottage up north Michigan. I learned so much form my grandparents about sewing seeds,manure,compost and reaping the benefits. Also about what to eat and not to eat. Hot peppers are not be eaten. My grandpa Gross taught me a tough lesson on that !!!!

I end this session with a happy smile and a restful weekend ready to get back at it in the am. Tonight perhaps I help Doug paint his extra large "Butt Ugly" cigarette butts for an anti litter night at the baseball game next week. He is the butt man.

Feeling Again........

Feeling is a strange thing. Sometimes I numb myself from feeling those things which are too painful: Aches and pains in bones, joints, muscles, heart and soul. I want to avoid anything unpleasant and seek all sorts of ways to avoid the cold hard realities of life. I do not watch TV news because it too depressing to watch our society slip down the drain. I try to read world news and then I get sad and angry because of all the pain in the world. I then meditate, eat, sleep, drink wine, snuggle with my love, day dream, read a book, watch a movie, talk on the phone and whatever one does to avoid being really still in the moment and allow whatever feelings are present.Meditation does this but sometimes I am meditating for world peace or healing as opposed to truly "feeling". This takes much practice. The truth is I am numbing with each and every action other than being completely present with whatever is at that moment. I have been trying something new for the past few weeks.....I call it "feeling It". Whatever the "it" is. If I see something sad about Myanmar, Iraq or Africa I cry. If I have a bad pain day I lay in bed and allow myself to truly feel every wrenching sensation as if I were going into the eye of a tornado. When I want to express something uncomfortable or think about an event I would rather forget I go even deeper into it. What does this mean? It means that after years of being so called "conscious and "spiritual" I realized I was numbing and putting on the happy face us woman especially tend to wear so often. I guess I am at that age when feelings and emotions are hard to deny or push down and the sensor button is worn thin with age and experience.

I remember watching my grandmother go through her change of life times with the utmost feeling and courage. She dared to say the unspeakable. I can remember being mortified when she would tell a waitress she was not doing a good job or make an off comment about a woman wearing too little in all the wrong places. Then I sadly have memories of her honesty with us "Damn Kids" and how at a very green young age, tender and raw, her words could bite. But now I am older and wiser. I see the importance of feeling and being honest with that feeling or desire or thought. Speak the truth. Tell it like it is. Be your own barometer. Then sit back and truly let the pressure dissolve inside your weary bones. The freedom that comes with age is that it is all good as long as we allow ourselves to be vulnerable and feel whatever we need to experience. Once the raw emotion passes and the pain subsides I get a smile on my naive face which lets me know I know nothing yet FEEL everything. This is a huge relief. In a weird way it is a pain blocker because the pain is there to tell us something if only we take the time to hear then it subsides like a needy dog desiring an ounce of attention. When we do not listen it gets louder and stronger. Why wait??? I say to myself. Life is too short and sweet. Taste the fruit and allow the emotions to run over your mind, lips and body in waves of reality, tempering all of life's trials and tribulations back to the stillness in our souls. That is true wisdom to me. Denial is just a river somewhere in us all which is ready to be unleashed and free.