Dear Thyroid^TM

Today’s “Comment of the Day” for “Flying with Broken Wings: Making the Most of Life with Chronic Illness”, is Lori’s comment. Every comment was absolutely FABULOUS, engaging and well thought out. We learned even more about our community’s outlook on life post-diagnosis, dealing with chronic illness for several years; as well as some extremely witty comments. Some comments were from people that don’t have a chronic condition who wanted to share their thoughts with Sarah – We welcome you and appreciate your input. We also heard from our resident vet about the affects pets have on people living with chronic illness and much more.

Lori says: March 13, 2010 at 12:47 pm

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

The “Comment of the Day” from our “Thyrants” post by HD in Oregon embodies the spirit of why rants are so important and the humorous side of life in the Gland Canyon.  “Thyrants” are an integral part of our community; it gives each of us an opportunity to share the gland good and the gland bad. We celebrate each other’s successes and catch each other when we fall. We make each other laugh and cry. Ultimately, we understand what we’re going through by reading each other’s rants. This, among other things, connects us with each other and reminds us that we’re not alone.

HD inOregon says: March 13, 2010 at 12:10 pm

Congratulations to all for some “grant rant”-ing!

Thank you, Lori and HD, and EVERYONE for sharing more of you with each of us!

Love,

Dear Thyroid

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(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 grateful for 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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Doctors, endocrinologists, integrative specialists, only those that don’t work with their patients; wake up! Your patients are more than the sum of their numbers. Regardless of what they try; many of them still have glaringly thyroid related symptoms. Your magic pills aren’t working for every patient. Start practicing medicine, figure out why your patients are struggling and why they aren’t achieving wellness. Stop pawning your patients off on other doctors (for thyroid symptoms) and do a little research. Really, it won’t kill you. That’s why you’re a friggin doctor.

Below, are some very brave patients speaking up about their symptoms and issues. I suggest you read this in its entirety and do something about it. Because if you don’t, we’re not going to stop speaking out about our respective illnesses. We will not give up. We will continue to fight and ensure that we get the treatment we so rightfully deserve. I’m just sayin’.

TWITTER

Dawnalive I have to partially re-pierce my ears every now and then. They close up easy.

HDinOregon Does having had a thyroidtectomy cause excessive rains in Oregon? Are there statistics to that effect? Growing webbed toes

aimlessaimers mine’s not very rant-ish. More whiny. I’m cold & can’t get warm even in hot shower. That’s all. not very ranty.

FACEBOOK

Kaytee Sumida I’ve been very achy for the past few days, and yesterday had an “off and on” migraine for most of the day. Not sure if it’s exactly “thyroid related”, but I did start DIM on Tues, and progesterone cream yesterday morning. These were recommended as a way to “balance” estrogen dominance, which may be why I have hypothyroid signs/sx in the presence of normal lab results and minimal response to thyroid rx. Hopefully, this is just a “clearing” that needs to happen so improvements can be made; I was told it usually takes 10 days to 2 weeks before there are any noticeable results, and about 3 months before any significant changes

Anna M. Holyst-Sourile My balance is off and i was freeeeeezing last night which actually brought our Raynaud’s – love having purple fingers yeay!!! If they only oozed purple paint – NOW THAT would be cool.

Tina Golding- Conklin Dr. lowered my meds a couple weeks ago. I went in to see him today because I feel like sh*t, he blew me off. Its like he wasnt listening to me, I am so frustrated and tired of feeling like this. He is usually a great dr. I hate this thyroid crap.

Lori Caprio Callahan Thyrant here I come…my thyroid supposedly looks normal but it’s so far from normal. I was painfully reminded this week how sick that little thysucking gland still is.  You let me down big time this week. I needed you more than ever and you said fuck you to me, but I will forgive you and be good to us this weekend with a massage and reflexology, and a trip to the bead store. I still have to work this weekend but if I don’t take care of me, you will continue to stomp on me and I’m not backing down from this fight. Hope you heard me because I mean it! Fuck you, right back atcha!

Amy Elizabeth Parker I got some thyroid labs and blood sugar labs done this week….seeing my Dr. on Monday. Hoping all is well! Can never be too careful when pregnant or otherwise, really!!!

Anita Roberts well, i’ve had an interesting week. last weekend i started on my new drug, plaquenil. i did everything i could to avoid it, but the RA just won’t remit or go away. slowly over the last 5 months my joints have begun to worsen, so i went ahead with it. a few days later, i got my erfa thyroid meds from canada. wow. suddenly i have energy and a slight lessening of joint issues. in fact, i had one day on wednesday with no limp. i’m waling miles every day now. nice. brain fog clearing, eyes de=puffed, sleeping better. no naps, and go go go all day-all week!!! well, yesterday i sort of hit the wall and the joints were really sore and stiff again. and i forgot to take the plaq. but, it’s all good. i can see that this combo will work. my voice is lower tho and throat a bit swollen. will have labwork for thyroid done in a month to see how new meds are affecting the ‘roid. other than that, i think it’s gonna be an interesting summer…

Anna M. Holyst-Sourile Yes my hair is still falling out – ughhhhhh! Ok maybe morrow i’ll look at cool wigs!  (Happy Thoughts)

Joanna Isbill So very grateful for all the awesome sleep I’ve gotten this week. **dripping with sarcasm**

Elizabeth Campbell I feel fat and I have another sinus infection.

Elaine Apodaca-Martinez My eye is acting up again. I thought I was done with my TED business. My bottom lower left eyelid had been flipping inward. An attached lash embedded itself into my eyeball. I had a bubble on the side of my eyeball and headaches and did not know why. Thankfully after the doc removed it and gave me meds it is going down. Who would have thought. Lids turning inward…………..what next???????

Kathleen Taylor just this week diagnosed with COPD. Now, I’m not blaming you, thyroid..however the fact that you make me need the Levothyroxine, and THAT can contribute to my breathing problems is not helping me any! I hate taking meds! How many more can I juggle?! This is interrupting my sleep along with the apnea you’ve had a hand in bringing on. Don’t worry though..I’ve got it covered. I’ll get that sexy CPAP next week. Maybe when I want to get romantic, I’ll put some lace on it..thanks!

Jessie Vigorito Tetelman false memories. I have a thought – like “I’m going to leave my keys in the ignition, so I don’t lose them” and this thought will make a memory that I did leave my keys in the ignition. However, I will then forget to leave my keys in the ignition and then I just fall back on this very real memory that I did, which leaves me hopelessly confused and frustrated. WHERE THE HELL ARE MY KEYS??? If I can’t trust my own memories, then what good are they?

Elaine Bastajian You mean it’s not just MY brain that’s wacky?

A D Blackadar I had a thought this morning. I’ve never thought of myself as having a thyroid ‘disease.’ More like a ‘disorder’ or ‘condition,’ but never ‘disease.’ So on a lark I googled hypothyroidism definition, just to see what would come up. Most of the time it was defined as a ‘deficiency,’ ‘condition’ or ‘disorder.’ Seldom was it called ‘disease’ (Hashimotos, Graves and thyroid cancer excluded, of course). For what it’s worth, Wikipedia actually referred to hypothyroidism as a disease. Words have meaning, and I found myself wondering if perhaps the reason why more people don’t take this seriously is because it isn’t really considered an illness or disease in the arena of public perception. It’s taken forever for alcoholism and depression to be considered diseases, and sufferers still find themselves the target of misinformation and stigma. There are still people out there who think depressed people or alcoholics bring it upon themselves somehow, as a result of a character defect. Unfortunately that also seems to be the attitude thrown at many of us who wrestle with our thyroids (e.g. metabolism has nothing to do with weight gain, we’re just fat, lazy (pre)menopausal hypochondriacs).  Just some food for thought.

Lauren Cosh I just feel so so ill and so depressed. Just dont know what to do.Ive had Graves for years, had RAI a year ago was severely Hypo. I am in normal range but my blood tests change every week…. plus i have low ferrtin 18 and low serum Iron of 7. My new integrated Dr has diagnosed me as Clinically HYPO, adrenal fatigue, insulin resistant, poss PCOSand IBS plus I get migraines. Im lying down all day and even that dosnt help. Will I ever feel normal, happy energetic with no anxiety and feeling severly weak and ill. It never ends… feel like gving up. MY only hope left is that may be starting on whole thyroid next week. Any advice or suggestions would be appreciated, thanks alot.

Linda Barton Reed My current rant: I am just so tired of feeling like crap 90% of the time. My mind has so many wonderful ideas and things I would like to do/accomplish, but my body will not have it. Most days I just want to crawl in the bed and shut out the world, even though I know how truly blessed I am. I don’t even like myself when I feel this way! I’m on meds, but apparently not the right amount. Plus, I started having new symptoms like dizziness, shakiness, achiness- especially legs and ankles, and feeling excessively tired, but wired- hard to get to sleep- at the same time. Thankful my dr. appt is coming up. I have to get some relief! If this dr. can’t help me, I’ll just have to find one who will. My daily “pep talks” to even get small things accomplished are helpful, but not near enough. Sometimes I feel so conflicted between my head and body that I don’t even feel like the same person. That is scary and very unnerving. Just knowing others understand really helps a lot, though! So, I’ll press on the best I can and take it a day/hour at a time until I see the light at the end of a very long, depressing tunnel! At least the sun is out today- that helps!

EMAIL

Thyrant:  I would like a little consistency with the info that my doctors give me!!!  One month they tell me that I am doing so well I’ll be in remission by the next appointment; at the next appointment they’re all doom and gloom about how if my number don’t improve they’re going to remove/kill my thyroid!  A month later they’re back to good news and another month after that it’s bad news.  Doctors: do not give me false hope!  I feed off good news so when a month later you rip it away from me I am double-y upset.  If you don’t know where my numbers are going to do, just say you don’t know!  I can take the ambiguity, I just can’t take the roller coaster!!!! ~ natasha

Thank you all for your bravery and beautiful rants; every one of them is important.

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Today’s post was a song (in thyroid version)  called “Crazy“, written by Robyn. If you haven’t read it, please check it out. Robyn shared her experiences of medication, and issues surrounding T4, in verse. Her song was clever, honest and very true.

It seems that in order to achieve wellness, in so many ways, we use ourselves as guinea pigs, to some degree or another, under a doctor’s supervision, of course, in the hopes that we reclaim some small piece of ourselves.

Today’s Comment of the Day encapsulated, so poignantly, the crux of Robyn’s post with a funny twist.

Thank you, Anonthp for your wonderful comment and thank you to everyone for bringing our community that much closer by sharing more of yourselves with each other.

Anonthp says:

March 12, 2010 at 12:16 pm (Edit)

Robyn,

LOVE the song. I sound just like Patsi when I sing it! hehe! Unfortunately I think we all start out thinking (because our doctor makes it sound so eeassyy) that all we have to do is take that little pill and we will be “cured” and when that doesn’t work, we start to look for something that will…

Thanks for a great way of putting that into thylyrics and also ending our week in some fun.