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Flying With Broken Wings: Making The Most Of Life With Chronic Illness
(Flying with Broken Wings, Written by Sarah Downing)
When we’re first confronted with that dreadful realization that we have been diagnosed with a chronic illness and that chronic means we will have to deal with it for the rest of our lives, our initial reactions are often shock, fear, sadness and anger. Many people feel as if they are being punished and might ask “why me?” Such reactions are normal and are usually followed by the acceptance that everything has changed. However, such changes don’t necessarily have to be for the worse. A diagnosis may require us to reevaluate and reprioritize our lives and do things differently that have up to now been the norm for us. This article is based on my conversations with various chronic illness sufferers, as well as my own experiences.
Acceptance of our condition and our emotions triggered by this is healthy and necessary in order for us to move forward. However, this doesn’t mean that we have to accept defeat. As one lovely thyrella put it: “When dealing with chronic illness you have to look at things differently. For instance, recovery takes on a different meaning: before chronic illness it means cure to most people; after chronic illness it means not giving up and living the best you can with the illness you are dealt.” It is the aim of this article to help you do precisely that.
I suggest we start off by spending quality time with our friends and families whenever we have the opportunity. With the decline in our energy levels, the time we spend with those we care about becomes even more precious. Even more reason, therefore, to surround ourselves with people who care about us too and who understand or at least make a conscious effort to understand what we are experiencing. Those who truly care will love and accept us for who we are irrespective of our state of health. However, if we expect them to do that, we must first learn to love ourselves and treat our bodies with respect. Illness frequently makes people feel physically flawed and inferior to those who have lucked out in the health lottery, but this is simply not the case.
When you are battling with your health, it is vital to start listening to your body, as certain symptoms are its form of communicating what it needs from us – for instance, if we are tired, this means we need to rest. We are always telling others to give themselves a break, but so rarely do we follow our own advice. You may well have to slow down for the sake of your healing process and your stress levels, but this is nothing to be ashamed of and, in fact, by doing so you are taking a responsible step towards getting well. Furthermore, many chronic illness sufferers have reported that this imposed slow-down has enabled them to appreciate life more by taking things at a more leisurely pace. When you are chronically ill, it is important to take each day at a time without fretting about what has happened in the past or what will come in the future.
It’s not a crime to admit we need help and there are several sources that can provide it. The first tip I’d like to give you is based on my own experience: delegate tasks where you can and where you need to. For years, we have had a cleaning lady, as we never have the energy to clean our apartment on a regular basis. Due in part to my lack of energy, I spend lots of time at home, so living in a clean and tidy environment makes it feel more comfortable to me. From talking to others, I realize that cleaning rates vary greatly depending on where you live and also that many people consider hiring a cleaning person to be a “guilty luxury.” Well, anything that makes your life easier is something you should embrace when your energy is flagging. As for the financial side, another thyrella suggested that cutting down on non-necessities, such as eating out, might help you put aside the necessary money you need to pay a cleaning person to come in several times a month. Alternatively, she told me of a scheme where several of her friends banded together and met up once a week at one of the group’s houses for a team decluttering effort. When it comes to cleaning, many hands really do make light work, so I could imagine this being very effective if you can find a group of friends who would like to do this. An added plus is that you get to meet up with your friends on a set date and are able to socialize while doing something productive. The friends had a similar scheme for cooking – they would cook meals together in bulk, so that each of them had enough to freeze for times when they were too pooped out to cook, but didn’t want to spend money on the (frequently unhealthy) delivery options.
For many, being ill feels as if we have been robbed of control of our lives. There are ways to regain this control by taking an active part in your own healing process. This means finding the right doctor for you. You are paying your doctor to make you well (or at least as well as possible), so you shouldn’t settle for someone who is rude, unknowledgeable or doesn’t listen. You deserve the best doctor your insurance will pay for, so don’t shy away from switching doctors if you feel your current doctor isn’t the right one for you. We can also be proactive by doing our own research. There are so many good thyroid resources out there and the more we learn, the more we can work together with our doctors as partners in finding the right treatment.
Not only does the Internet offer a wealth of resources, but thanks to online communication there is now also a plethora of online support communities. One thyrella describes this phenomenon as follows: “I know that by reading about others who manage to survive every day that they conquer the illness we all have and there is a place we can all come to and talk, learn, rant and sing praise to, that there isn’t anything I can’t do, and when I have trouble, I can come there and read, interact, and find ways to cope. Dear Thyroid™ has been such a blessing and lifesaver for me.” In turn, many people find it rather cathartic to put pen to paper and write down their own health struggles. As you know, this is something that Dear Thyroid™ welcomes with open arms.
One thing I have noticed in my work for Dear Thyroid™ is that an incredible amount of thyrellas and thyfellas seem to have pets. Perhaps this is no coincidence because many people feel that pets understand us better than our fellow humans and I know from my own experience with our orange tabby Biscuit that they can be incredibly empathic and supportive just when you need them the most, which is highly beneficial when you are chronically ill. I’ve even heard of scientific studies claiming that owning a pet can improve your health. When she needs a cuddle, Biscuit will jump up on to the bed, announce her presence with her characteristic meow and purr in my ear whilst cutely dribbling. No doubt about it: welcoming our golden kitten into our family has truly changed our lives.
One thing we must not forget when we are ill is to take the time to do the things that we enjoy. In my case, singing is something I am passionate about and so when I sing it is liberating and makes me forget about a lot of the bad stuff. I love getting behind a microphone and singing karaoke. It makes me feel attractive even though there are days when your thyroid can make you feel downright ugly. In some ways, being diagnosed has changed my life for the better. Since my diagnosis, I have learned a ton about medicine and am finding it very fascinating. In addition, I have been given the opportunity to write my column on Dear Thyroid™ and thus help both myself and others. In this way, I can learn about my disease, how to cope with it and to face up to the fact that I have it. Furthermore, it makes me realize that there are things I can do to make my life better. I’ve been truly blessed by the lovely friends I have met through Dear Thyroid™ and I couldn’t ask for a more supportive bunch of people. For many people, chronic illness changes us for the better by making us more compassionate and understanding of others who are going through suffering.
One thyrella credits her sanity to “living in the moment” techniques such as meditation (diaphragmatic breathing or yoga breathing), arts and crafts and puzzles. She’s recently started treating herself to massages. When our bodies are not feeling as well as they should, any kind of physical pampering such as massages, pedicures or manicures can really cheer you up. She goes on to explain that “doing your passion is sooo fulfilling and so good for your spirit. It’s what keeps us going. So many of us have been robbed from doing what we are passionate about. Creating and digging in the dirt are my two passions, both of which I have not done in so long because of just trying to keep up with work and not having more energy or focus to do anything else. I’ve learned that that has been such a mistake. I think doing what we love is also healing for us.” Another thyrella I know is a passionate and talented photographer and she once told me: “I have so much fun … if I’m in a bad mood I’ll take out the camera and I’m instantly in a better mood!”
Now that you’ve read my article, I’d love to know from you whether thyroid disease has changed your life for the better in any way and what your own personal coping strategies are. Looking forward to hearing your experiences!
Love,
Sarah
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63 Responses to “Flying With Broken Wings: Making The Most Of Life With Chronic Illness”
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Hi Sarah,
Thanks for a great post! Well done!
For me the “chronic” portion of my disease sort of crept up on me. I was side-tracked by cancers, and paid little attention to the thyroid cancer part until the other two were under control and taken care of. – Now, the thyroid cancer after-effects are actually the once that cause me the most issues. The roller coaster of medication balancing and adjustments; the constant fatique, the nasty mood swings, and the draining lethargy, they cause me a lot of grief!
And no, I was NOT prepared by my docs for the difficulties dealing with a chronic illness. I got the “oh, you just take a little pill treatment”.
This forum and the wonderful support here, and some additional research online, have made me keenly aware of how difficult it is (and will be) to manage this chronic lack of a thyroid gland.
I wish you all “Balance and Joy”! You are not alone!
HD in Oregon
Ah, forgot one thought about pets. — They’re really important. When I had to stay in bed during my recovery, I had two cats with me that kept me company. They even gave me occasional CAT-scans.
And had we a bid brown dog, I could have had PET-scans as well.
🙂
HD in Oregon
… opps, I screwed up the joke. Meant to say LAB-work instead of PET scans. To bad we cannot edit our posts. – HD
Petting and other physical contact with a pet has been scientifically proven to lower your blood pressure, and increase quality of life (studies in elderly patients). I think for many elder people (who often have diseases/disabilities) as well as those of us who have issues and are NOT ELDER YET, thankyouverymuch, having someone depend on you, ie, a pet to take care of that needs fed, walked, etc. not only shifts the focus away from our problems, but also basically forces us to get out of bed and attend to their needs.
BTW, Sarah, I agree about the house keeper (or yard/gardener, etc). I have had a wonderful woman clean our house for YEARS. My daughter draws her pictures, I hand down clothes for her daughter, etc. I will give up the coffee shop, all eating out, etc. long before I will give up our twice a month house cleaning! It just makes my life more manageable having only to tidy, wipe down, and occasionally vacuum without worrying about having to do the real deep cleaning.
Help is not a luxury.
Sarah, you did a beautiful job and there are so many helpful ideas on how to not let thyroid disease ruin us and define us, which I think is so important.
Sometimes I still hear that little voice in my head saying, you’ve been robbed of so many years, it’s not fair, and I have a moment of feeling sorry for myself. I think thats the toughest part for me still, but I let it happen and then move on; thankfully, I’m not stuck in that awful place any more. I am so happy you are diagnosed and on the right track. I often think of you because the first thing I noticed when we met was that you were born the year I graduated high school and it was during those years that I became so much more aware tha something was awry.
Thanks again for a wonderful column.
Lori
🙂
Dear Sarah,
Thank you for writing an awesome article about chronic pain which through your persnal expereince validates a delicious recipie for leading an enhanced and fulfilling life.
You are the best,
Marilyn
Thank you Sarah for yet another great article. For me I find that once diagnosed I did a lot of research like you. I have to admit though it can become quite overwhelming at times with all the info that is out there. Trying to weed out what is, what works and what does not work can be frustrating.
I have had some really bad doctors and no longer will tolerate or accept their arrogance and egotistical remarks/and bad diagnosis. I am not longer afraid to walk away from that kind of pompous ass doctor. Instead I find one that really cares about my health, that is more knowledgeable about my symptoms and one that is willing to be more aggressive with finding a correct diagnosis and treatment.
And last I have found that keeping my stress levels down helps tremendously. When I am having a stressful day that things like a snuggly pet, candles, reading a book, listening to more calmer music like spa type, Celtic, Vittorio and acoustic guitar helps calm me. I realize listening to calmer music while getting a massage and notice how much their spa like music played a part in relaxing me. I now listen to this type of music in the car on my way to and from work, on my ipod or relaxing on the couch reading a book. Since I don’t have a fire place I bought a fireplace DVD that looks and sounds like a real fireplace. Combine the candles, calm music, fake fireplace and a good book with a snuggly pet on a comfy couch really does wonders!
I can completely understand how many chronically ill persons would have a pet in their life. It is hard to fully express how much joy our little dog brings to our lives. I suppose it is a nice comfort to have a little companion that you know will never let you down, or forsake you. Take care!
Sarah – I love this article; what hit home for me was the notion of acceptance. I struggle with this so much. I keep telling myself, You’ll get back to your old self. Memories of the old Katie will come back, along with your kick ass vocabulary and how you physically looked before you were diagnosed with Graves’ disease.
Can I get a whoop-whoop for denial?!
Acceptance is a huge part of the process, which admittedly I have not achieved.
Regarding pets; when I had Louie http://deaddogsclub.blogspot.com/, he kept me alive, no doubt about it. He anchored me to the world. He was a little person in a dog’s costume. Without him, life is even more difficult than I realized. Though I will never get another pet; I do believe that pets are remarkable little people that are always there for us with unconditional love.
Great article!
Katie
HD – I appreciate what you wrote about not being prepared because I wondered if thyroid cancer patients are prepared for thyroid disease post thyroidectomy. Clearly, some might not be. I’m sorry to hear that you weren’t prepared.
I loved your PET-scan joke. Ha.
Have you accepted the chronic elements of your condition? If so, how did you do it?
Katie
Robyn Help is not a luxury, is so true. Love my cleaning dame. She’s a doll and not having to deep clean every week helps so much.
I didn’t know that there was scientific evidence to prove the benefits of having a pet. Thank you for sharing that bit of dish. I did know that having Louie absolutely helped me in terms of tending to his needs and wanting to do so, even at my sickest points.
Great comment.
Katie
Lori – How did you come to a place of acceptance? What did you do to accept that your conditions would be with you for life? I’d love to know, if you don’t mind sharing.
You weren’t diagnosed in High School, but you knew something was wrong?
Love the comment,
Katie
Marilyn – Very nice to see you around! Thanks for taking the time to comment and share your thoughts.
You make a great point re: Having a recipe for leading an enhanced life despite our conditions.
Great comment.
Katie
Laura – Thank you so much for commenting and sharing a bit about you and your story with us.
I love that you no longer accept bad treatment and that you advocate for yourself, that is so inspiring and brilliant. We, it seems, have to learn that the hard way. Do you feel that way?
Doing research took enormous work and sifting through what was good and real was difficult at first because I didn’t know what I was looking for. Mary Shomon has been my ‘go to’ for all things thyroid because I know it’s great information. I’ve also found other resources online via Mary and my own research.
I love the way you take care of yourself. Out of curiosity, if you don’t mind me asking, what symptoms worsen when your stress level is high? What triggers do you know to look for when the stress is starting to creep up?
Lovely comment.
Katie
Dave – Thank you so much for taking the time to comment, we really appreciate hearing from you!
Do you have pets? I think they do help regardless of an individual’s situation.
I hope we hear more from you.
Katie
Sarah, you excelled yourself again this week. You made some wonderful points this week.
You do have to come to terms with the fact that you have a lifelong chronic illness and realise that your life has limitations on a day to day basis, and plan each day round how you feel that day.
For someone like myself who has lived with the thyroid condition for more than 30 years, and got used to living with my messed up thyroid gland, its good to read how well you are resigning yourself to life with a chronic lifelong disease, Sarah. As they say ‘been there, done that….got the tshirt LOL ‘ You learn to know how your body feels and as my doctor said to me recently. ‘I don’t need to tell you Miriam, you know all there is to know about your thyroid condition’ I took that as a ‘back handed’ compliment, but it doesn’t help when they still rely on the TSH/T4 normal guidelines and don’t think you need a change of medication!
Your moods feel up and down. Like you, and a lot of you out there in thyrellaland I have had a weight problem for more than half my life. I am happy that I have managed to lose some of the weight, but still loads to go, but any weight loss, however small does up your self esteem somewhat and makes you feel positive that you are winning the battle somewhat. Losing weight has also made me evaluate my eating habits and learn what to eat and what not to eat. There are so many foods out there and we all need to learn what foods help our poor thyroid glands function more efficiently for our well being and what foods don’t.
I agree with you regarding owning pets. They are a comfort to you, and know somehow know when you are not feel well or feeling down and come to you for attention when you are feeling down to cheer you up. I wouldn’t be without my two wonderful cats.
Keep up the good work, and look forward to reading next weeks column 🙂
Love to all you thyrellas out there in thyroidland
Miriam xx
Hi everyone. Sorry for the delay in posting. It’s been a rather long day, most of which was spent at the doctor’s waiting and waiting and waiting, but when we finally got to see him, he had some good news … in December, I was diagnosed with active Epstein-Barr virus and since then have been on antivirals. Now my levels are back to normal levels and the virus is no longer active! Woot! This might explain how when I sleep now I actually feel refreshed and sense my energy levels gradually creeping up!
Hi HD, thank you very much for your insightful and amusing comments. I actually looked at your profile the other day because I was curious whereabouts in Germany you are from. I see you are from just down the road in Cologne – we live in Düsseldorf! Were you diagnosed with your thyroid cancer in Germany or the US? Do you think one or the other of them has better healthcare, or is it impossible to compare to two – like apples and pears, as you Germans say? We’ve really lucked out with our thyroid doc as he truly is a specialist. Medication balancing does indeed suck – sometimes it seems that as soon as I go off one medicine, I’m put on another one, but because I know most of the meds won’t be for the long-term I try not to stress about it too much. I do make sure I do my research for each medicine I take, its possible interactions and side effects because in my experience it’s rare that doctors tell you everything you need to know. One thing I’ve learned in the last few months is that when I listen to my body, I’m mostly right. I asked my doc to test my Vitamin D levels, which is something he hadn’t got round to testing yet (I can’t fault him though as he tests enough other stuff and is really on top of things) and sure enough I have a Vitamin D3 deficiency, so will now be taking supplements for that. If it wasn’t for everything I have read online about people’s experiences with the thyroid, I wouldn’t have even thought to ask for a Vitamin D test and I have also heard that some people experience some incredible energy boosts as a result of taking it. I’m not surprised I have Vitamin D deficiency – as you will know from living in Cologne (were you ever a fan of Karneval btw – I wrote my dissertation on that?), Germany ain’t the sunniest of places and the sicker I am, the more time I spend inside sleeping and resting. Vitamin D apparently comes from sunlight, so I doubt I’m getting much of that at the moment. I’m so glad you have your pets to love and support you – I never realised how rewarding it can be to have a cat until we ended up adopting Biscuit. When Corey finally got a job in one place (long story suffice to say that last year he was working half in the US and half in Germany, so would commute back and forth every two weeks), we moved to Düsseldorf to be somewhere more international and that’s when we decided we’d like a ginger (or as most Americans seem to say “orange”) cat, this particular colour because I thought it would be a hoot if the cat matched Corey’s hair colour. As luck would have it, our friend and neighbour was looking for a new home for her cat Biscuit and so it feels like it was meant to be!
Miriam – Thank you so much for sharing your story with us.
Having dealt with thyroid disease for so many years, at what point did you accept it? What did you do to accept it?
I love that you have found a way to begin losing weight. I do think that changing our eating habits and our relationship with food helps. In fact, Liz’s column has helped me tremendously to learn about thyroid friendly foods. It’s also given me an entirely new outlook on how to overcome my symptoms and, or manage them through nutrition.
The mood swings are still ever present. It seems maintaining a ‘normal’ thyroid is something I can’t seem to maintain. I am most certainly not alone in this. How often is your thyroid balanced? Do you spend more years with an imbalanced thyroid?
I’m asking loads of questions and I hope that’s okay.
Love the comment,
Katie
Robyn, so glad you chimed in with your knowledge about pets! Thanks so much for providing the exact statistics. Not only did I read that owning a pet can lower blood pressure, but also that they can lower cholesterol and triglycerides. I’m not really sure about the last bit (how is that even possible?), so purposely kept that statement vague as I’m not an expert like you. I can say from my own experience though that Biscuit is a true friend and member of our family – sometimes Corey goofs around and dances with me while holding her. He (and I) both love her to bits and she gets terribly spoiled, but she deserves it too.
Living in Germany, housekeeping has never been terribly expensive. You can expect to pay anywhere from EUR 8 to 20 an hour depending on whether they are bonded or not. I’ve had a cleaning lady come in for years now and it’s also something I wouldn’t do without – you don’t realise how valuable it is until you have it, but it changes your life knowing that you don’t have to worry about the extra hassle of keeping your house clean and that your house should always be clean enough to invite friends round whenever you choose. I have even had friends who are the kind to turn their noses up at a house that wasn’t clean, but they’re not the kind of friends I tend to cultivate. As I work from home anyway, once I’m done with work (when I have the energy) I want to get out and do other stuff. It does indeed make it easier to maintain a clean, tidy house if you have somebody coming in every week. I know some of them even do laundry.
Thanks Sarah, I can’t imagine what it would have been like for me without this group. I read the posts every single day and appreciate everyone so much! I too keep thinking I will be a different me just around the corner. I have no words of wisdom to share today and most days. I’m blessed with a supporting loving family and two canine humans. Thank you all for talking to me every day so I don’t feel so alone in the battle.
Cheery waves to all of you!
Lori – thank you so much. I often think of you too – you’re one of my friends who has truly inspired and infected me with her positivity and awareness against all odds! I can imagine how you must feel when you say you feel robbed. Sometimes I do too, as looking back I had my symptoms for much longer than I even realised at the time. I started putting on weight in my early 20s and I often felt inferior to other girls of my age because of my weight issues. I’ve often felt I stuck out like a sore thumb here in Germany because of my weight and sometimes it sickens me to think I could have prevented the weight gain. That said, we are frequently way harder on ourselves than we should be when it comes to looks. I also spent years in bed and I merely attributed it to the fact that I wasn’t a “morning person”. I didn’t know much about medicine before getting diagnosed, but this disease has made me turn my life around, made me stop beating myself up because now I know what’s going on with my body and it’s also made me develop a passion for researching on the topic. I’m very glad you got out of that pit of regret and that you can now look forward with positivity thanks to your good doctor and thanks, not least, to your own wonderful research – many of your tips, support and ideas have really helped me!
Thanks so much your kind comments, Marilyn! My illness and the experiences of others have taught me a lot and I am always happy to share what I have learned. If it helps others in some way, I’d be delighted!
Laura, I know you personally and your attitude to your illness is inspiring. I’m sooo proud that you have done all the research you have and that you are not afraid to switch doctors or see yet another one in search of finally getting some answers. Don’t give up – I will be there with you whenever I can. Thank you too for sharing some very useful tips on your stress-busting methods.
Dave C, I’m very happy for you that your dog brings you such joy. Take care too and thanks for commenting!
Katie, you still do have a kick-ass vocabulary and you still are an inspiring dame. Like you said so yourself, illness changes us in so many ways – what we have to realise is that it’s not always for the worse. I always admire the way you manage to juggle your busy freelancing and running this site – kudos to you! I hope that you will learn to appreciate yourself more, because I can tell you that you sure have a lot of others here on the site who appreciate you. As the lady in my article said, Dear Thyroid has been a life saver to her and I am sure many, many people feel the same.
Thank you very much for sharing your link to your blog on Louie. I know how much he meant to you and how much it hurts that he has gone. “A little person in a dog’s costume” is sometimes how I think of Biscuit, but in a cat’s costume of course. Sometimes it really feels like our pets are more sensitive than many people, which is why I never understand when people say pets aren’t sentient – they totally are! I’m going to read your blog on Louie in more detail once I get more time, but I already took a brief peek and you have some beautiful pictures of him!
Miriam, thanks for your comments. I’m glad you liked my article. You’ve been very supportive to me and given me some good tips yourself. I only wish my own mother (who is of the same generation as you) were as empowered and knowledgeable as you are. At some point, I’d definitely like to write about weight issues and body confidence – I think that would be a great topic. I think so many of us suffer from weight gain that we often forget those who suffer from weight loss. Out of all my friends, I can’t think of a single one who has the latter problem, but I’d really like to find out more about it because I think it can be traumatic whichever way you swing. You’re so right about foods too – learning the individual things that work well for our bodies is what is going to help us get well.
Shan, I can totally relate to your words. I searched for quite a few months before I found this group and I am amazed at how supportive and accepting most people are. It makes you feel much more at ease about speaking your mind. It’s awesome that your family and pets support you as they do! You don’t always have to have words of wisdom. I think support is often enough and – as I said above – going through chronic illness often makes us more compassionate to others and thus better able to offer our emotional support, although we should only give as much as we feel able because we need to learn to look after number 1 and start being a little more selfish in some cases. I think for many of us overstretching our physical and emotional capacities contributed to us becoming ill in the first place.
My initial feeling upon being diagnosed was, “Why, How did this happen? I didn’t do anything to cause this! I’ve always taken good care of myself and tried to lead a healthy lifestyle. It’s not fair!” When I was still feeling angry and sorry for myself soon after my diagnosis of thyroiditis, autoimmune disease and trigeminal neuralgia, a good friend of mine who had been dealing with MS for years told me, “It’s not a death sentence, it’s a life sentence.” That really helped to put in into perspective for me. Life has never been and never will be ‘fair.’ A top priority is finding the right doctor who will listen and who is willing to try alternative or at least a different medication until you find what works for you.
Thanks for your dedication to this disease.
Carol
Carol, you make a very good point. So many of us feel as if we lived a healthy lifestyle and still got struck down by chronic illness. Society is very ignorant in this regard – people tend to assume that it’s enough to live healthily, but it would make more sense (in addition to this) to do routine testing for things like thyroid disease, so that people could get diagnosed earlier and thus get better sooner without the disease ravaging their bodies as much as it frequently does. Your friend with MS has an excellent point. Thyroid disease has helped me to reevaluate my life, it has helped me to help those I love and care about, as well as several people online. A good doctor who will listen is vital. I feel as if my doctor respects me and I know he loves the fact that I do so much research. So often he has listened to my suggestions and, like many, I have often have an inkling as to what is going on with my body. Do you have a good doctor? I hope so. Do you feel that you have now come to terms with your disease? Do we ever fully come to terms with it?
Katie,
Re: “I appreciate what you wrote about not being prepared because I wondered if thyroid cancer patients are prepared for thyroid disease post thyroidectomy. Clearly, some might not be. I’m sorry to hear that you weren’t prepared.”
My situation really was quite different from most thyroid cancers. I had a nasty throat cancer on my tonsil, chemo was rough, radiation destroyed my taste buds (took a full year for them to come back), radiation also made my throat so sore that I needed massive pain meds, and a feeding tube because after a while nothing would go down. (The gory details are on my website http://www.hd-una.com/hd-cancer.html)
For the thyroid cancer my surgeon just prescribes some Synthroid at a dose he guessed at from my body weight, and said we deal with the thyroid when the other cancers are out of the way. He was rather sure he got the thyroid cancer through his operation.
So, I was fighting for my life with the throat cancer the the susequent merkel cell carcinoma (a type of a skin cancer), both can be agressive and deadly. Any side effects from the thyroid meds were drowned out by the massive side effects from the radiation and chemo.
It took about 6 months until I saw an endocrinologist, and it took 9 months until I finally had the ablation for the thyroid cancer follow-up treatment. Then, and only then, I started to worry about “what does it mean having to adjust my thyroid hormones for the rest of my life”. – I don’t really blame my doctors for not preparing me right away because there definitely were other priorities that they needed to address first.
Only later it sunks in that I had a chronic illness. That is when I started to look for support online, and sought out better medical help. My first endo unfortunately left our small town, the second one was a boozo, and now I am happy with the current, and to me relatively new, endo (though I think my meds still aren’t fully balanced yet).
My motto is: “I can live with that”. Emphasis being on “live”!
HD
Sarah,
Yet another great article from you. My point is are we ever truly prepared fro anything that life throws at us first there is the shock as you put it then the deniel and then but not in every case the exceptence can we ever truly except that life has given us a roar deal and have to change our lives around to suite the disease.
I find my dog very theraputic she understands me better than i understand myself I swear sometimes she is human, if she could talk i know exactly what she would be saying right now “why didn’t you take me with you”.
she knows when I am in pain, tired or just not feeling great she curls up beside me and sneds her energy to me It may sound silly but I feel my dog is sometimes what keeps me going. I have to take her for walks when sometimes I don’t always feel like it. family have the same effect but in a totally different way.They can take themselves for walks.
Lolly
Thank you, Lolly. Sadly, not everybody reaches acceptance and I think it often takes a long time to truly come to terms with the fact that we are going to be dealing with this forever. For me (and I’m sure for many others) my diagnosis was an answer to why I was suffering the various symptoms I had been for years and now I know that I at least have the opportunity to try and change things and start feeling better. I’m so lucky that I got diagnosed by the right doctor who is doing his best to get me well (or as well as I can ever hope to be). What you said about your dog doesn’t sound silly at all – it seems that many, many of us share this experience. Pets are friends and confidants. Some people say that are more sensitive to certain energies, so why shouldn’t they also be more sensitive to people’s feelings?
Guten Tag Sarah!
Yes, I was born just outside of Cologne in Germany, but I am living in the US for over 30 years now. If you want to know more about me and what I am up to (including samples of my art) please visit my website at http://www.hd-una.com
As to the health care system of the two countries, I have strong opinions about the problems with the American system, but on the other hand I left Germany so long ago, and other than occasional bit and pieces that I hear from my sisters in Germany, I don’t know the Germany system any longer. I hear many changes have taken place since I left in 1976, so I cannot really comment on any comparison of the two.
Regarding “Karneval” – yes I miss it a lot, that is a time of the year when I get homesick a little. But wee play German carnival songs from CDs and my wife (she’s American) makes me some German comfort foods (Rievkooche met Rübbekruck). And I silently sob into a glass of American mirco brew. Grin.
You are right about the vitamin tests. I had checks for Vit D and Vit B12. Also I had my ferritin checked, and my general iron levels. All – if deficient contribute to fatigue and lethargy (which are symptoms I am still struggling with). But I too had to request these tests from my endo after I leaned more about it from the internet and groups like this.
Yes, animals are great companions when one is down and out. Our cats (we have 5) seem to sense when someone is very ill. It is so comforting (and as Robyn said blood pressure reducing) to have one near.
So, nice to meet you here in this great forum and support community.
Alles Gute nach “good ol’Järmanie”. LOL
HD
Katie (or whoever is the Webmaster of this great blog and forum),
Would it be possible to install the ability to edit ones posts after they are fired of to the forum? I am such a lousy typist and proofreader, that I really would appreciate such a feature. Other forums have it (They put a timestamp on it, so that readers know the text was edited by the owner.)
Thanks for much,
HD
HD;
Yes, I will ask our webmaster if we can have an edit feature for comments. I think that’s a great idea!
Katie
HD;
Correct me if I’m wrong, but it sounds like the throat cancer was so horrific that you didn’t even have time to deal with the thyroid cancer and adjunct side-effects until you were fully recovered from the throat cancer?
You have been through so much, child, too much.
Katie
Fabulous article, Sarah. This really jumped off the page at me: “With the decline in our energy levels, the time we spend with those we care about becomes even more precious.” I absolutely agree. Cancer has made me cherish life more, to really soak in the moments I spend with family and friends. But at the same time, cancer made me so radically different that it was really hard, and sometimes still is, to be with friends and family because I really felt they no longer understood me. It’s the hardest to be with those I don’t see or talk to on a daily basis because I feel like they just don’t get me anymore. And sometimes I don’t feel like putting forth the extra effort to let them see the new me.
Loved all that you had to say.
xoxo,
Joanna
Guten Tag HD!
When you say just outside of Cologne, where exactly? I used to live in Hürth, but I also know the general area. Thanks for the link to your website. I’ll definitely check it out.
Whereabouts are your sisters based in Germany? Do any of them suffer from thyroid disease? It seems my whole bloody family suffer from it. You are right, just a few years ago, there were big reforms and cutbacks in the state health insurance here, so that many people ended up having to get additional insurance plans to cover things like glasses, dental, etc. Private insurance tends to cover more, but is only available to you if you are a freelancer or earn over a certain amount. On the flipside, you still have to argue with your insurance at times as to the medical necessity of certain treatments. My doctor has had to write a letter to my insurance to let them know just how sick I am so that they can hopefully get it into their thick skulls that I do need the treatments I’ve been having (I’m mainly having issues with them bitching about paying for physiotherapy and back treatment, but I’m sure I’ll sort it out. I can be pretty persistant and it has paid off so far, although I read something about you going through similar crap with insurance-induced stress, so I know you know all about that!)
It’s great that your wife can make you German food. I guess my Kölsch (for those of your who are unfamiliar with this term, that’s the dialect spoken in Cologne) isn’t as good as I had hoped. I recognise Rievkooche as Reibekuchen (I always think of them as roughly equivalent to hash browns), but what on earth is Rübbekruck. They’re usually served with apple sauce, aren’t they, but Rübbekruck is one word that I just can’t figure out.
I also had my B12 checked, but my levels are fine. I’m pretty sure our doc does our ferritin too – what is the difference between general iron levels and ferritin? I always assumed they were one and the same.
Alles Gute nach Amiland (I never liked that term much, but that’s what people tend to jokingly call America here)!
ONce again .. great job!
I remember being diagnosed and asking my mom why me? Why if this is a hereditary disease why me and not my brother (not that i would wish this on him or anyone else) but you have to understand i was so upset.
So many great ideas! Ive always felt guilty about hiring a “mamasan” (japanese for cleaning lady). I booked her and then ended up canceling because of the guilt.
Biscuit sounds amazing! My dogs are my world. I love them so much. Like you said, they seem to know and are always there to cuddle and put a smile on your face. And yes, my camera has done wonders for me lately!
Loved it!
Thanks, Cynthia! I hope that you can use some of my ideas, starting with rehiring your bloody cleaning lady, girl! You have no reason to feel guilty whatsoever. When you said “mamasan” means cleaning lady, this cracked me up as this is what they call the lady who runs the local Korean karaoke bar that we often frequent, which rather reminds me of an okiya (geisha house) because of all the females trying to entice the male customers to drink more, although from my experience this seems to be pretty much the norm here at Japanese karaoke bars, although they are frequented by both men and women. I am glad that you have your dogs. I know how much they mean to you. Keep it up with your photography. I know it brings a smile to my face and I also know that I’m not the only one who thinks you are a natural talent!
Joanna, I am glad that you were able to identify with some of my article, but sad that you have to go through that with your friends and family, although it is sadly not a rarity and something that many people with chronic illness have in common. I also touched on this topic in several of my other instalments (this is the third one to date). Because of our dwindling energy, I believe that we have to become more choosy about who we spend time with – it’s tough sometimes, but sometimes it does help as it makes you realise who truly care and accepts you as you are.
Thank you Sarah for another beautiful article!
I am not sure I would know what to do without my two fuzzy people who keep me going. When I feel my worst they make me feed them or give attention and prevent me from feeling lonely or too lazy, lol. So wonderful your news on your EBV numbers back to normal, yay! It truly gives me hope that I will get mine down too. As more people have the good results with the medication you had available in Germany, my hope is it will become available here in the US. I have always wanted to hire someone to help with the house work and felt it was too expensive, but as Ive had to accept the reality of my ongoing health issues I think it is time to make it happen for us, the stress reduction alone would be worth the cutting back on other things that don’t make our life better in the long run. I would feel far more capable of cooking at home if I first didn’t have clean up after the teenager, or myself. So often I can barley get up to cook let alone stay up to clean after. I used to be such A neat freak, guess I found the cure!
Thank you all, for your contributions to this site It is the first time in years I have not felt so alone.
Sarah,
I was born in Bergisch Gladback, my sisters live in Remscheid and Radevormwald, and my brother is in Soligen-Ohligs. So they are very near each other.
We lived in Hürth-Hermülheim for a while too, before my wife got homesick and I decided to try the land of opportunity for a while. Well, I’m still here; the US has been good to me. I worked for a long time in the computer industry in the San Francisco Bay Area (Silicon Valley).
Rübbekruck is Rübenkraut in German – so that is how we eat our potatoe pancakes, with molasses, according to how my dad liked them, and he was a real “Kölsche” (born and raised in Cologne).
No thyroid history in my family (to my knowledge), so I am the first one with this disease.
As to the ferritin vs. iron blood levels, I need to do some digging. I seem to remember that there were two entries on the blood test results form. One for ferritin concentration and another for iron in the blood, but I could be wrong on that. Had the tests last year. Maybe it is time to renew them.
It is past midnight in Germany,
so I wish you “Gute Nacht”
HD
Katie, Thank you;.. I agree with the having to learn the hard way regarding bad doctors. I was raised to take what the doctor says to be the word and to not question or disagree with them. It almost cost me my life several times literally before I realized that not all doctors are good ones and that it really is ok to walk away from that doctor and seek a better one. Like Sarah said “You deserve the best doctor your insurance will pay for, so don’t shy away from switching doctors if you feel your current doctor isn’t the right one for you…
When I was diagnosed with Hypothyroidism back in 2006 I was totally clueless what a thyroid was and how important its role is to my body. It was Mary Shomons site that I found so informative that helped me understand all about it. I now find this site to be very helpful in all areas Thyroid related. It is truly a wonderful site. I no longer feel so alone with this disease.
As for, “what symptoms worsen when my stress levels are high?†They would be fatigue, more intense body aches, easily agitated, sadness/depression, anger and the “I just want to give up feelingâ€. As for “What triggers do I know to look for when the stress is starting to creep up?†They would be the onset of the symptoms above but at a lighter level. I also tried to avoid family members, friends and co workers who tend to increase my stress levels, especially during an episode. In fact I go out of my way to avoid them, especially at work.
Katie,
Re:
“Correct me if I’m wrong, but it sounds like the throat cancer was so horrific that you didn’t even have time to deal with the thyroid cancer and adjunct side-effects until you were fully recovered from the throat cancer?”
You are absolutely right, the two other cancers were so scary I did not have the thyroid cancer on the radar screen till much later. (And the doctors also assured me that I was quite safe with the thyroid cancer being dealt with at a later date).
Instead of thinking how to deal with a chronic illness, I was worried about surviving!
But as a German proverb goes “Unkraut vergeht nicht” – translated “it is rather hard to get rid of weeds in your garden”. I am delighted to say, I’m still here!
🙂
HD
Thank YOU Heide for all your contributions to my articles. The dogs are beautiful and extremely cuddly! I don’t understand why the Isoprinosine isn’t available in the US when tons of other countries have approved it. Germany tends to be rather fussy about approval processes, so I don’t think it would be approved if it wasn’t safe or didn’t work. Sometimes it takes more than just sleep and relaxation to get our bodies back to normal, so it was good for me to have this extra boost of the antivirals, even though they do taste rather rank and I had to take eight a day at one point – it was on the whole worth it. I think you guys would benefit greatly from a cleaning person, but then I’ve said that in the past too. You just don’t need that kind of stress when you are chronically ill and I know that your daughter does have some tidiness issues, but then the poor girl is tired herself – makes you wonder how much does run in the family, doesn’t it? I am very glad if this helps you to not feel alone. We so often do feel alone with chronic illness. Being a member of this site and getting involved in it has helped me immensely too!
Hi Hans, I know Bergisch Gladbach as we visited a friend there the other day and even got to see some wild boar in an enclosure in the forest. I also know the other places you mentioned, but then I have lived in NRW for almost 10 years now
Thanks for your explanation of Rübbekruck. I think it’s usually found in a bright yellow tub here. It is certainly an interesting combination! I would be interested to hear about ferritin versus iron and whether or not there is in fact a difference.
Nächtle! Sarah
Maybe I ought to clarify my last post to Katie. – The thyroid cancer was not left alone to grow and spread, my thyroid was removed in the same operation my throat cancer was removed, and the surgeon gave his best to get a clean margin. That was made the surgeon feel OK with leaving the post operative treatment of the thycan until later.
HD
Sarah, my dear friend, thank you for the kind words. I am sooo proud of you too! I have watched you blossom into a wonderful inspiring writer and thyroid advocate. Your contributions to us thyrellas and thyfellas are truly a blessing. I look forward to next week’s article!
@ Katie dear, I will try to answer your question:
(quote) “Lori — How did you come to a place of acceptance? What did you do to accept that your conditions would be with you for life? I’d love to know, if you don’t mind sharing.”
Katie, you experienced extremely frightening symptoms prior to your dx, as did I, although they were very different from yours, but it was the extremely frightening symptoms that ultimately brought me to a “fork in the road”. I had to make a decision at that point what I wanted, i.e. to be stuck in a wheelchair if I wanted to go anywhere, with an electrical stimulator implanted in my body to interrupt the burning nerve pain (later found to be caused by myxedema), but not enough that I would be able to come off pain medication, etc. I was alive but I was not living and that was not acceptable to me, hence the need to make a decision. I was tired of trying to just survive. It was rather black and white to me; either I laid down and gave up or I somehow took my life back and not accept the doctors diagnoses, which I did not believe in my heart were correct.
The first thing I had to learn how to do was accept my life was forever changed and the only way I knew how to do this was to embrace it. Yes, I said EMBRACE it! But, first you have to grieve what is gone. It’s not easy but so necessary in order to move forward, IMHO. When I say grieve, I mean that in its purest sense of the word. The loss is huge (it hurts deep) and no different than the death of a loved one. After all, we have lost part of us so when you think of it that way, it makes sense. You can’t feel guilty about feeling that way.
Tell yourself, it does not define me, it’s only one part of me, and you will start to believe it (because its true). If you change the message in your head, you will start to see change happen. Meditation was what really allowed me to do this. I feel meditation really saved me and I could not have survived the pain without it. If we don’t get rid of the anger, after a while it breeds sickness and compounds our ills. It holds us back. However, it is perfectly normal and I think necessary to go through these stages. Everyone is different in the extent of it or how long it takes. The important thing is that you are slowing moving forward kicking ass, and not backwards. It’s a process, that’s for sure.
One more thought, just because we need to accept it as part of us, it does not mean we ever have to like it and we can still tell it to fuck off! Does that make sense or have I enter another realm and I’m just so far gone I don’t know it?