I’m being hard to please. I admit it. I don’t know what I want, but I somehow desire other people to figure it out, when even I can’t.
The truth of the situation is that I have been off of my main medication for rheumatoid arthritis since August 2008. I’ve never been off of this classification of medication since I began it about eight years ago. I had to go off of it due to an infection last fall, and between my high risk for infection and need to have hand surgery I’ve not been able to take it (And I haven’t been able to have surgery due to edema, etc.)
The result is that every day gets worse. Literally. That’s not being pessimistic, it is just my reality right now. My rheumatologist has put me on a medication that people took for RA 60 years ago so I could feel like I was “doing something.” But it’s one of those medications that takes months to kick in, and it’s also raising my danger zone for my liver, so I don’t know how long I can keep taking it. Monthly lab tests will tell.
So I am on about 20 different medications from anti-inflammatories to pain killers, steroids to medications to try to help me sleep, control blood pressure, etc.
If that is the situation, what is my reaction?
Last week was a bad week physically–the worst it had been up until that point. I moaned about it a bit. I’m sick of it!
My Twitters and Facebook postings had people writing me back saying, “Praying for you.” “Hope you feel better soon.” I appreciated it. I explained to my husband one night I didn’t think he realized just how bad each day had been and he listened patiently with sympathy.
But this week he has had to work 15-hour-days every day on a project that is due. We are so blessed that he has a job (and hence, my health insurance) that I can’t and won’t complain for a moment about that. But has it been harder being on my own each day, all day and evening with just me and Josh? Sure. I’ve gotten Josh to bed an hour earlier each night by 8:15 or so and I’ve quickly followed, asleep by 9 p.m.
I haven’t even wanted to post “updates” this week, because I’m even sick of hearing myself whine. But my knees haven’t been able to unbend for days. I walk hunched over and hold onto walls, furniture and cars. I’ve tried to not give into it and still make it a fun week for Josh. We’ve made cookies, played Play Doh, watched a movie, gone to McDonald’s, karate, and hav had 3 play dates. Tonight is the Variety Show at his school and we’re attending. I’ve pushed through and have made it.
So why do I feel a sting when people write kind comments to me that say, “I see you’re posting on the list so you must be feeling all better! I’m so glad!” or “Are you feeling better this week?”
I want to say “No! I am NOT feeling better! I won’t feel better! Every week is going to get worse until I am healed up from a surgery that isn’t even scheduled yet.”
Yes, I am posting to some lists. I am trying to work to keep my mind off of things and then other times I am too exhausted to think straight and I just walk away from the computer. But I feel awful.
I feel badly I’ve not answered people who have kindly asked if I am better? I don’t want to say, “No, and I won’t, thanks, for awhile.” I don’t feel like being cheerful and saying, “I am hanging in there.” I don’t know how to be honest.
When my friend called and asked how I was I said, “Uh… I’m doing okay.” She said, “Just okay?” and I said, “Well, I know I’m sick of saying I’m not doing great and you’re probably sick of hearing it, so I don’t know… Lately I’ve been stealing my friend Pam Farrell’s saying… ‘I’m choosing joy!’”
Something as simple as “how are you?” shouldn’t caused such mixed emotions, right? After 15 years of chronic illness, I should be past it causing any emotions at all. But even as I write emails to people who I know are chronically ill I hesitate as to what to say. Do I say, “I hope you are feeling better”? Or do I say, “Unless you let me know otherwise, I’ll assume you are still having a lot of pain”?
We have a 50% chance of getting it right. When we are right, the person in pain gets a moment of “ahhh” –like getting into a hot tub. The sting of pain is taken away for just a few minutes. When we get it wrong, it’s a sting that is more like wading into the cold ocean waters.
What are your feelings? Experiences? While I am waiting I guess I will go update my Twitter. I’m still deciding to be honest (and boring) or “joyful” and upbeat.Read Full Post | Make a Comment ( 27 so far )
Tuesday, March 17th Oprah’s show will feature an interview with Montel Williams about living with chronic illness and they will be joined by the well-known physician Dr. Oz. This is not an endorsement of any kind for Oprah or her television show, but I am eager to see what this episode reveals regarding living with illness, and am glad to see an illness that is invisible being represented too. The preview also shows it will feature Scott Hamilton and Fran Drescher.
You can comment on the program now, or after it shows at her forum at Oprah.com (you must first register). If you feel comfortable doing so I encourage you to express what it’s like to live with a chronic illness. It’s no secret I would love for her to be aware of National Invisible Chronic Illness Awareness Week, and for her to see that nearly 1 in 2 live with illness—quietly–not just the celebrities that are willing to speak out.
Here is what I submitted to the forum. It is waiting approval (and I’m not sure it will make it through or not.)
Everyone copes with a chronic illness in the best way he or she knows how at the time. I have lived with rheumatoid arthritis since the age of 24 (16 years now) and like many people who are posting here, I just take one day at a time. Right now I have been in a new “season” of my disease, off Humera since Aug 2008 because I ended up with the flesh-eating bacteria in a wound. Extra prednisone and other meds are keeping me going–but just barely.
As founder of National Invisible Chronic Illness Awareness Week, I am eager to see what this show entails. As a long-time viewer of Oprah through the years, I applaud her efforts to finally talk about the emotional impact of invisible illnesses. (MS can be invisible for years and then can become “more visible” as the disease progresses, liike my RA and many other illnesses.)
Many of us may be frustrated if Montel shares experiences that are different than are own. I see posts that express that Montel is a bit whiny about his experience of “fighting for his life” while living with this disease.
But a couple points: One, he isn’t alone in his experience and will be encouraging many people who feel alone and isolated in their feelings of suicide. According to various studies, depression is 15-20% higher for the chronically ill than for the average person and physical illness or uncontrollable physical pain are major factors in up to 70% of suicides—over 50 % of the people being under 35.
Secondly, I think the honesty and vulnerability he expresses (as seen in the brief preview clip) are vital so that more people can be aware of “the face” of invisible illness. Let’s face it: when people like Montel Williams or Michael J. Fox (who is on the cover of Good Housekeeping this month) speak out, it gives illness a face — and a young one at that! Something those of us under 60 should appreciate.
It’s a nice reminder to healthy people that there are many of us who “look fine” but who are not, and who can legally park in the handicapped parking spot when necessary (even when we emotionally don’t want to!) Over 133 million people live with chronic illness, about 1 in 2 in the USA and about 96% of these diseases are invisible.
I have always liked Dr. Oz and am glad that we can hear from him on the topic of illness, perhaps even some of the emotions behind it. Rather than just sensationalize Montel’s experience, I think it’s vital that the audience hear from a well-respected physician on what you can do after the diagnosis when the illness begins to affect all areas of your life, as well as that of your family.
Thank you for taking the time to let people know about Invisible Illness Week. This year it will be September 14-20, 2009 and we are planning for it right now! We are eager to see how we can spread the word even more effectively this year and you make a huge difference!Read Full Post | Make a Comment ( 3 so far )
I just read this Letter to the Editor of a Jacksonville paper in response to the article,–that I couldn’t locate! But that said, here it the response to the article (Maybe it’s best we didn‘t have the article to read-it just would have made us angry!)
I know when you read something unpleasant about your illness, it can be hard to pick up a pen and write the editor. But I encourage you to do it and let them know just how prominent invisible illness is too.
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Monday’s article demeans all of us with fibromyalgia.
The horrible part was the “Mind over Matter?” stating that “Patients diagnosed with fibromyalgia are more likely to have a history of mental illness, be overweight and economically disadvantaged.
Some doctors say their suffering may stem from difficult circumstances rather than disease.”
I run a support group for people with fibromyalgia, and that is not the case. We are all type “A” personalities who have been forced to change our lives due to this horrible disease/syndrome.
All of us would give up our “great” disability checks for the more profitable lives we were living before the chronic pain and fatigue. We may be overweight now, due to not being able to exercise, but this was not the case before the chronic pain and fatigue started not after the diagnosis.
We all had the symptoms years before we actually got a diagnosis. No, we are not hypocondriacs.
Fibromyalgia is an invisible disease. Thank goodness we don’t look as bad as we feel.
Walk in our shoes just one day and then say we have a mental disorder.
This article is free to be reprinted, but it must be left “as is” including the footer at the end. Thank you for sharing it!
You’re Too Young to Be That Sick!
By Lisa Copen
I was twenty-four years old, enthusiastically living in new city, finding my independence, careers, and following my heart when I became disabled in a period days and was eventually diagnosed with rheumatoid arthritis. It only took about four weeks, but with two visits to doctors a week, explaining my significant pain, it felt much longer. Eventually I found a wonderful doctor of internal medicine who asked me about fifty questions. In about two days I had a diagnosis.
As with many people, having specific terms like “chronic” and “forever” attached to a painful condition can simultaneously create emotions of fear and relief. At least something describes the chronic pain. There were not many friends, however, that understood or participated in my enthusiasm for a diagnosis. And the office managers at my place of work were not concerned about my pain level, but rather about when I would be able to get back into some heels to keep the office looking professional.
“Encouragement” was quickly tossed around, like “You’re too young to feel so badly!” Rheumatoid arthritis was only something that could be related to the aches and pains their grandparents suffered from and a hot water bottle made it go away. They’d laugh and say, “You can’t have arthritis yet!” Those who attempted to sympathize, compared my weary body to a sports injury they had. “I have a touch of arthritis on my knee cap from football in college. It’s not fun when the rain comes, but you just have to keep pushing and not think about it.” Even well-intentioned words were enhanced by the brush off of a hand or even rolling eyes.
A diagnosis in your twenties throws off all the typical decisions one is making. Your twenties should be about deciding on an education, a career, relationships, and where you will live. Suddenly, most of these choices are put on hold. Instead decisions are about how you accept (or do not) accept the diagnosis, what medications to take, what the risk of side effects are worth it, and how to locate the right doctor. We learn how to decipher lab results, what alternative treatments to try and when to have a good cry versus when to just bite your lip.
As I tried to make each decision based on careful research, instinct, and “worse case scenario” situation, hearing someone flippantly say, “You’re too young to have that illness” felt like a slap in the face. Though a simple comment, my heart felt it deep, as if they assumed I was too ignorant or accepting of the doctor’s diagnosis. They implied that I needed to be more assertive and get a the “real” diagnosis of an illness that could be cured in a few weeks with a pill. After all, I couldn’t really be that sick, because I “looked so good.”
Laurie Edwards, author of Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties says, “However infuriating and irrational such comments are, they only have the power to define or validate our conditions if we allow that to happen. There are all sorts of reasons why people find it easy to scorn or deny illness, especially in younger people who ‘should’ look and act healthy.”
The saturation of advertisements on television and in magazine for prescription medications has helped legitimize some illness, such as rheumatoid arthritis and fibromyalgia. There are downsides, however. For example, everyone considers her self an expert on the, plus they make their assumptions about how well the drugs work based on the ads. The advertisements show people with debilitating illnesses (healthy models, actually) who are astonishingly now able to water ski or join their kids on 300-foot water slides. While a certain percentage of people may experience remission, the majority of us are happy to be able to get up out of bed without assistance, get dressed, and drive to the grocery store. Ads and commercials fail to alert people that though an illness may be temporarily controlled, they are usually associated with immense daily chronic pain.
With any chronic illness, most of which are invisible illnesses, there will be people who will be skeptical about how much your life is impacted by your condition. When you cope with an illness while in your twenties or thirties, and you “look healthy” they will have even more hurdles to jump over to get the fact that for you to feel better requires more than an attitude adjustment or a daily walking regimen.
Get an instant download of 200 Ways to Encourage a Chronically Ill Friend from “Beyond Casseroles” by Lisa Copen when you subscribe to HopeNotes invisible illness ezine at Rest Ministries. Lisa is the coordinator of National Invisible Chronic Illness Awareness Week held annually in September.Read Full Post | Make a Comment ( 10 so far )
Something that a lot of us chronically ill people have in common is that we have limited energy. A lot of us can only do a small fraction of the thing that “normal people” do. Personally, I only have a couple of good hours each day where I can get out and meet with people, or do work for the SPCA, or even have lunch and shop with my Mom. And if I do that one day, then I’ll probably need to rest the next. And maybe even the one following.
For me, I know a lot of the reason I need so much rest (and have so little energy, a.k.a. “productive time”) is because of the side effects of my meds. I take seven different meds each and every day, and fatigue is a side effect of at least four. Another side effect that comes from individual meds, and the combination of meds that I take, is that my mind is sluggish. I often feel like I’m pushing my way through quicksand when I try to think, to process. That is pretty exhausting, too.
I sleep a lot. I mean, A LOT. I used to sleep for twelve or thirteen hours at night, be up for two, then nap for four or five, and stagger through the last few hours of the day. And when I was awake, I was so foggy, so mired in the quicksand, that my “awake” hours were not really awake, in an aware and able sense of the word.
Now, I have a new med (fairly new, I’ve been taking it since the spring) that helps to banish some of the murkiness and feeling of slogging through quicksand. It doesn’t take it away, but it allows me to have at least a couple of hours a day that I can write, or go out, or do housework, or whatever. And I don’t need to sleep so much: about ten hours at night, and I usually go two or three days without needing a nap. It might not sound like much, but it’s been a huge improvement to the quality of my life.
When I first had my breakdown, I didn’t sleep at all. I rested a lot, and I did probably fall asleep for wee catnaps, but I was desperate for sleep. Psydoc finally found a combination of meds that let me sleep (forced me to sleep) on a regular basis. My sleep today is not particularly restorative, despite how much of it I do. I think that my need for ten hours of sleep to be able to function is like the “normal” person having five or six hours of sleep a night for a protracted period. They can manage, they can get through their routines, but damn, what they’d give for a good night’s sleep. For me, a “good night’s sleep”, in terms of quality and not quantity, is hard to come by.
I’ve also found that I resent having to sleep so much. Not so much at night, but I fight and rail, tooth and claw, against having to nap. Another issue for me to work on. It’s a struggle to accept, especially when I was always on the go, constantly, before my mind finally forced me to stop.
It’s hard for many people to understand that I don’t have an unlimited well of energy to draw upon. My well is rather shallow, actually, and I have to save up the energy for a lot of days to be able to spend five or six hours at someone else’s house, or at a fundraiser, or wherever. And then the well is dry, and I have to spend a number of days letting the water rise again so I can do even the basics, like have a shower or cook a nutritious meal.
Anyway, something that I found immensely helpful, not only for my loved ones, but also for myself, was something called The Spoon Theory. Christine Miserandino of www.butyoudontlooksick.com is the one who created it. It is a way to explain to people who don’t have a chronic illness what life is like when you have one. It is a fantastic story, and I would really, REALLY encourage you to go here and read it. It will truly help you understand, and is better expressed than I could ever hope to do. So go. Now! Read it!
A former lawyer, Linds of The Muse Asylum spends her days carefully. She balances chronic depression and anxiety with her love of written and oral advocacy. Her passions include promoting animal welfare, preventing the abuse of children, and using her own experiences with mental illness to educate others.Read Full Post | Make a Comment ( 7 so far )
It’s taken me years to deal with all it sends my way. My eyes finally opened up the day that my neurologist validated my leg pain of four years. I had complained about my leg pain symptoms for four years, with not one doctor running a test. All it took was a doctor to listen to my symptoms and react. The neurologist ran an EMG to find out what was wrong with me. It was one of the most painful tests I’ve ever gone thought’s was diagnosis with nerve and muscle damage in both legs and both arms. My legs are worse then my arms. But I finally felt validated and not crazy.
Some days, I don’t feel so bad and then there are other days that I just plain feel like every train in town is out to get me.
I think the one of the hardest things to accept is the reactions of people. There’s been many instances of me being told that I did not hurt that much or doctors ignoring my symptoms. It really hurts when people say you can’t hurt that much. I have to remind myself that it is my body and I am the one living with the chronic illness, not them.
For a long time I became very angry about there reactions to my illness. I’ve come to believe that if they want to be in denial its there business and I can’t let that define me. It still does bother me when people avoid that I even have a chronic illness. Some people find it easier just too totally avoid the topic of your illness. Once again it’s easier for them to live in their own denial.
Another hot topic is the fact that sometimes I use a wheelchair and sometimes I walk. Let me tell you I use both because I need to use them. I cannot walk too far or I will pay for days with extreme pain in my legs. Short distances are not so bad or if I know I can sit down from time to time. Then there are days I can’t walk at all.
Each day is a new adventure for me while living with lupus, fibromyalgia and its side dishes. I can never plan to have a “good” day because of these illnesses. Before I got sick I could plan things, now I can only have tenetive plans.
The many aspects that these illnesses have brought for me at times are overwhelming and I’ve learned to deal with them the best way I know how. One of the main ways I deal with living with lupus, fibromyalgia and its side dishes is spreading awareness of the chronic illnesses on my website
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Instead of having surgery in 2 hours on my right hand I am sitting up on the computer, working on getting HopeNotes, our weekly ezine out.Surgery had been postponed. And I am bummed.
The edema I suffered with in my right foot the week of II week turned into cellulitis on Sunday, with a trip to the emergency room, and then another one to the doctor today since it’s absessed.
Isn’t life unpredictable?
So… for the moment I am glad my right arm is not in a cast, but I have been a “patient in pain” for the last few days, barely able to walk, etc. and surgery hasn’t even occurred yet.
Why do I want to have surgery? Well, for one, I was all mentally prepared. I had the next 3 weeks crossed off on my computer.
Plus, the surgeon also expressed his concern that my hand did need taken care of soon before a major tendon ruptured (My right wrist bone is pretty big and sawing down the few tendons I have left in that hand). I can’t pick up a mug of coffee, put on shoes, turn the steering wheel, nothing, without it clicking and being in pain.
But, being a patient on auto-immune suppressant medications… and now an infection… there is no way surgery can happen right now.
Most healthy people may think, “Oh, no big deal; so you have to reschedule.” But it you are like me, you know the recovery period is much longer than typical for any surgery when you deal with illness. I also will have a cast that goes about my (bent) elbow on a shoulder that needs joint replacements. So my mom had flown down from Oregon for 2 1/2 weeks to help pick my son up from school, entertain him, take care of me, etc. It just throws everything off, ya know?
Who wants to do rehab during the Christmas season?
I know God has re-arranged all of this for some reason, but He didn’t consult me on the convenience factor. I had a good plan! And am a bit whiny about it (can you tell?)
Anyway, for those of you who had been praying for me, etc. thank you! Keep them up, because I still need them. I’m wiped out and the infection and not being able to walk much is just draining. I’m up working because I am trying to distract myself from the feeling of needles poking my ankle and foot.
I will be doing some postings soon here, but in the mean time, if you want to know what’s going on over at Rest Ministries (and we have lots of interesting little news bits, even if you aren’t a believer, so don’t let that scare ya away) you can sign up by clicking here email@example.com . I should have the next HopeNotes out in a few hours… or sometime Wednesday, depending on when the body gives out.
Lis~Read Full Post | Make a Comment ( 5 so far )
It was an amazing week… because of you! Thanks to each of you who posted a blog, told people you know, handed cards to clerks at the grocery store, left them in waiting rooms, wore your tshirts or carried your tote bags, clipped on an awareness pin, told your pastor about the week, told a friend, emailed a friend or loved on the link to a program you thought s/he would enjoy; thanks to the people who called in during our shows, who got someone to help them figure out how to listen to the shows, who wrote and encouraged us and told us we were making a difference.
WOW! That list could go on and on… and it will soon as I want to share what some of you have told me you did! Stay tuned!
But first I wanted to update you on a few things.
1) I am just about 1/2 done with awarding prizes. Some have shipped today, some tomorrow and the rest throughout next week. Thanks again to all our donors. You can scan the page to see if you’ve won something “so far” here. We are posting first names, initial of last name and city/state to maintain your privacy.
2) Our seminars have had an average of about 500 listeners each so thank you for spreading the word. Remember that you can still share these, forward them on to a friend, and even put the coding up on your own web site. (We’ll have instructions on exactly how to do that soon.) The web site for all the programs is
As soon as we get the email from itunes we will post here to let you know it’s available in the Apple (R) itunes store as a free podcast download. You can get the WHOLE week on your ipod! What a great way to be inspired while you are bedridden or walking around the block to get some exercise!
3) We had some wonderful guest blogs and they are still coming in. Our hope is that we can continue to post about 1 per week and also keep you in touch with different invisible illness issues in the press, etc. If you read something (like a disturbing Dear Abbey letter) or see a show about handicapped parking, etc. bring it to our attention and we’ll consider writing about it or sharing it with others!
4) It’s been so fun to read the blogs you all have been posting THIS week about Invsible Illness week impacted you. The stories are amazing. Keep sending them or posting your comments here. They all encouarage other people too! I’ll try to get another blog roll up in the next few days if I can. Speaking of which the How To Cope with Pain blog asked what you learned during II Week and I’m the only comment she has received! I know you have emailed me but scoot on over to this blog and post a comment and be sure to read her other stuff too! Wonderful–you’ll want to bookmark it!
5) I am having hand surgery the 24th of Sept. I have x-rays the 18th to decide if I really should do the left hand or if the right hand, which has been bothering me more lately, should be done. My heart says, “The left will be so much easier…” My head says, “Be practical and realistic and do the right.” We’ll see what the surgeon says but I’m sorta freaking out about losing the abilities in my right hand to type easily and work the mouse for a month. Please send up a prayer for easy recovering, less pain and maybe…. perhaps… no joint replacements. So know that though I may be “quiet” the next month, my heart is still here and I may just be telling other people what to type for me!
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What an appropriate theme for National Invisible Chronic Illness Awareness Week, and it has such a personal meaning to me. Let me share that meaning with you. I am a woman who has lead an extraordinary life, I am a Mother, a Grandmother, a photographer, a college professor, a crafter, a writer, a great cook, the site maestro on WeAreCrohns.org and a gardener.
Did I mention that I am medically disabled due to 11 different invisible autoimmune illnesses?
To maintain a better quality of life I had to end my career, go on SSDI and start down another path in my life. Its been eight years now, and I still miss it terribly, but be at have finally come to the conclusion that although I have retired a few hats that I thought I would always be wearing, but have actually replaced those hats with new hats that are so fulfilling to me right now, that I am not even missing the old.
One new hat, (but it could also be classified as old,) is my gardeners hat…the only difference is I have way more garden now to tend than I did when I was well. I tell everyone I know that it keeps me off the streets, but its way, way more than that.
The constant positive metaphors and analogies that come along with gardening and living with long term chronic illness are countless. The simple pleasure of just being out in the garden, feeling the cool wet soil in the spring turn into the warm soil of the fall that bears the fruits of my labor of love during the months between.
But even after the snow falls each year, I have plenty of pictures of my gardens to lovingly place in my garden scrapbooks, to place motivational and inspirational quotes on to send to people that I know need a pick me up, and I have catalogs to look at and plans to move this plant here to there, and then its time to start seeds, and then its time all over again to go back out into nature where my world has no illness, no pain, no sorrow, but only good karma, peace, and such a wonderful sense of well being.
I seem to come to terms with my health issues when I am out in the garden….I do an awful lot of thinking in the garden. I mediate in the garden. I pray in my garden. I do light morning stretches out by my koi pond in the garden. I journal and blog in my garden, and most recently have been making web cam diaries in my garden. I also do a lot of weeding in my garden.
Figuratively speaking and intellectually speaking. In essence, I purge my mind of any bad self talk and sadness I may have about current health issues and come away from my garden with renewed strength, hope and optimism.
They say, you get what you pay for…well, I put countless hours of love and affection into my roses, iris, and lilies and other countless perennials, and I get millions of smiles in my heart, on my face, in my soul and of all the people I then give them to. All this on top of all the aches and pains that come with gardening. They end up being such a small part of it all though.
You see, you don’t have to be healthy to plant and maintain a garden. You can have as few as one plant in your home, to a few small containers on a deck to a few plants in a small garden where you can sit and enjoy them. It’s really about the self satisfaction of caring for something living and watching it flourish and then keeping that wonderful feeling of love and satisfaction stored away deep inside of you to enjoy on a day you are not feeling well.
I think one of my greatest joys is giving people bouquets of cut flowers. I usually have a rose shears in my back pocket and it’s common for me to cut a rose and hand it to someone walking down my sidewalk who tells me how beautiful my garden is. My garden makes me feel beautiful when I am not necessarily feeling that way. My garden makes me proud of the job I have done taking care of all the precious flowers in my garden. They are like children to me.. Each and every one of them…
I literally welcome them in the spring when the buds start peeking out of the still frosty ground. When the tulips and crocus pop up and bloom it gives me a renewed sense of hope and optimism for the future….Its like I am able to recharge my strength, my courage and my will in the spring. As the spring gets a bit warmers I uncover and dig up my 45 rose bushes to see that all of them survived yet another winter to be tipped upright once again so that within a month they will render the beautiful scents and colors that fill me with happiness.
As spring turns into summer, there is not a day that I do not appreciate being alive to enjoy watching all my flowers grow, into something most spectacular! Spring, summer and fall in my gardens provide me with endless hours to photograph the beauty of my gardens. I watch patterns of light in my gardens. I know exactly when the light falls on any particular plant at anytime of the day that presents the best light in which to photograph its beauty.
Then, that beauty in all my photographs I look at over and over again during the winter for inspiration, and I share that inspiration with others. The simple fact that I can grow something so beautiful from a seed into something beautiful that will touch others positively has made me feel whole again. I feel important and viable again. It gives me personal joy, happiness and fulfillment like those same feelings I got from my career. It becomes a full circle; I sew what I reap and reap what I sow.
And I sow the hope and strength I get from my gardens to others as the site maestro on a great website called WeAreCrohns.org. I stumbled across this website shortly after it started last December and I have found my true position in life there. And that is using the 37-year journey I have lived while living with Crohn’s disease, to give hope, inspire and motivate others who are living with the same illness.
The mere fact that I have suffered terribly during that time is not what I share with the members, but I share what I have learned during that time, I share my philosophy that you CAN live a positive and proactive, worthwhile life even though you have a unique set of health challenges. Don’t let your circumstances define you, you have to have the mindset that you can and will live your life to the fullest as you can.
I let people know that it better to go to half a concert, or movie than to not have gone at all, its all a mindset, and requires lots of thinking outside the box…you are only limited by the restriction your mind puts on you, not what your body says you cannot do. I am a firm believer in the words never say never. You just don’t know until you try.
I would rather try to nurse a little seedling back to health even if I knew it wouldn’t make it, because there is always the chance it will thrive. In my garden I have the time to reflect over all the things that have happened in my life and I have been able to find the answers to my questions in that I haven’t suffered in vain, because I have much to share with others that can only bring them hope because its really quite simple, even though I have been ill for almost 4 decades, and I have the capacity to focus on the positive. I have learned from the negative or painful experiences involving my health issues, and then moved on.
Even in the worst of times, we need to muster up enough hope for the future, because in reality, we can’t go back and fix what we have lived through. But, we can be proactive, we can take part in our future good health, and we can do that by creating awareness.
Awareness for Invisible Chronic Illness, and awareness for our own individual medical conditions. The more noise we make, the more proactive we are in getting involved and helping others get through their rough times, not only helps others, but we model behavior that is caring and compassionate to others who may not be aware of our health issues. Treat others as you wish to be treated.
It comes back to the soil, I love digging in, in my garden. We sow what we reap, and we reap what we sow. I like this new garden hat. It suits me just fine.
Be kind to yourself.
National Invisible Chronic Illness Awareness Week is important to me because it is a week for those of us living with Invisible Illness to be motivated by the wonderful selection of speakers, along with it being a week for us to model the type of behavior to those who dont understand about Invisible Illness in the same manner that WE would like to be treated. By providing positive information, awareness and behaviors to others, it paves the way for hope, hope for a cure for what ails us, but hope that we can positively educate other about Invisible Illness.
Marybeth Lonnee says, “I was diagnosed at age 16 in 1971 with Crohn’s. I have had 3 bowel resections, 8 kidney stone surgeries, and have many other health issues including RA, Fibromyalgia, Sleep Apnea, Gastric Reflux, Mennieres Disease, Anyeurisma, Hypothyroidism, RLS, and Ostoearthritis, Depression and panic and anxiety. I was a support group leader for the CCFA back in the early 80′s as well as president of the Minnesota Chapter. I had to go on medical disibility in March of 2000. I am on social security disibility. I have tried to live my life as proactively as possible and am currently writing a book based on my experiences living with long term chronic illness. When I am not writing I can be found out in my garden. I am forever optomistic, even after almost 37 years, that a cause and then a cure will be found.”Read Full Post | Make a Comment ( 5 so far )
One of the most challenging parts of living with a chronic illness is that it’s just so daily! This week is National Invisible Chronic Illness Awareness Week, September 8-14, and they are offering twenty free online seminars hosted by some of the leading illness experts that can help you cope better with life issues. People of all faiths are welcome to attend; a few of the “coping” workshops, however, have Christian authors who turn to the Bible as their foundation for truly understanding how to best cope with daily pain and illness. These include:
· Stress-Busters that Work: Faithful and Fun Ways to Lessen Stress and Encourage Hope and Health will be presented by Maureen Pratt, well-known author of Peace in the Storm: Meditations of Chronic Pain and Illness. For more than ten years, Maureen has written and spoken about health, prayer, faith, and living with chronic illness and pain. She has also lived most of her life “in the trenches” as a patient who has a number of illnesses. (TBA, rescheduled)
· Dealing with Hurt Feelings and Mixed Up Emotions will be discussed with Leslie Vernick, a counselor who focuses on improving one’s relationships with others, God and self, teaching people how to address conflict, speak the truth in love, handle adversity in a God-centered way and negotiate through difficult and destructive relationships with biblical principles. Her most recent book is The Emotionally Destructive Relationship. (Monday, 12 p.m., pacific)
· Medications, Illness, Fertility and the Desire for Motherhood will be presented by Jennifer Saake, author of Hannah’s Hope. Jennifer has lived 18 years of illness, with infertility for 10 of those years. Balancing both conditions includes: medication side effects (illness meds on fertility and fertility meds on illness), questioning sanity of wanting desperately to have children yet fearing how she would care for them when she can hardly care for herself, facing the frustration of attempting adoption when her health makes her less “marketable.” (Tuesday, 12 p.m. pacific)
All seminars will be featured live via Blog Talk Radio for forty-five minutes, with questions from callers taken the last fifteen minutes. See dates and times for additional seminars at www.invisibleillness.com, which will be recorded and archived.
Many guests have donated free items or services, which will be given away in prize drawings. Bloggers are invited to participate by blogging on invisible illness topics September 8-12, 2008 and to download the “I’m blogging for Invisible Illness Awareness” badge from http://www.invisbleillnessblog.com .
National Invisible Chronic Illness Awareness Week was launched in 2002 by Lisa Copen, author of “Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend.” It is held annually in September and is sponsored by Rest Ministries, Inc., the largest Christian organization that serve the chronically ill.Read Full Post | Make a Comment ( 2 so far )
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