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I Hear You Butterfly

Post Published: 30 July 2010
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Category: Dear Thyroid Letters
This post currently has 25 responses. Leave a comment

Dear Thyroid:

From the bottom of my heart, I apologize.  I’ve tried so hard to make up for all the years I didn’t hear what you were trying to tell me, but you are screaming once again trying to tell me that something is amiss.  I want you to know that I hear you loud and clear now, and I hope we can continue to be a team.

I’m sorry I didn’t hear you when I was in my early 20s and needed to write notes to myself, take a nap most days, lost my left tube and ovary, and started growing facial hair.

I’m sorry I didn’t hear you before I was given no other choice but to have a hysterectomy at the age of 32.

I’m sorry I didn’t hear you when my joints started to ache so badly.  And brain fog and word finding problems started settling in.

I’m sorry I didn’t hear you at the age of 36 when my ankle ligaments gave way once and for all and resembled stretched out elastics without ever having an injury.  I needed ankle reconstruction but never healed properly and remained in pain.  Sounds strange I know but even back then, in 1995, the orthopedist said he had only seen one other person end up like this without injury and she had a “hormone” problem as the cause, but he didn’t know more than that.  Was that you too or maybe chronic vitamin D deficiency?

I’m sorry I didn’t hear you when you continued to make me so sleepy all the time and one nap a day wasn’t enough anymore, and depression was setting in.  Oh, let’s not forget a side order of fibromyalgia and chronic myofascial pain to go along with that.  Oh wait, how could I forget about the diagnosis of narcolepsy that was treated with Ritalin so that I could stay awake while driving and working.  Oh what fun it was to stop the Ritalin cold turkey after 5 years, NOT.  I was told by one psychiatrist I would have to get ECT, (electroconvulsive therapy), since I couldn’t tolerate any of the antidepressants.  Those drugs actually made me wish I was dead.  I declined and was told I was a noncompliant patient.  Fish oil treated the depression beautifully, thankyouverymuch!  You tried so hard to tell me.

I’m sorry I didn’t hear you in my 40s when I started to feel off balance and walk into doors, and the pain started traveling from my ankles gradually spreading up to my knees.  The pressure in my legs was so painful and you made my nerves feel like they were on fire.  I couldn’t bare even the bed sheets touching my legs.  They wouldn’t cut off my legs to make the pain go away, so I wished for an 18-wheeler to come and run me over when I was in my car.  I was not thinking rational anymore.  You even turned my legs sunburn red with tiny lesions and they still didn’t have an answer.  You screamed so loud.  They ruled out MS and Lyme disease, among other neurological maladies.  I had a spinal tap, actually two because the doctor failed to get the needle in the right space the first time.  I had brain MRI’s, CAT scans, EMGs, x-rays, months and months of physical therapy.  They diagnosed bilateral idiopathic polyneuropathy.  I love that word “idiopathic” – it just means they have no idea what the cause is.  After a while, the neuropathy diagnosis was changed to (CRPS) Complex Regional Pain Syndrome type-1 (formerly known as RSD).  By this time, I could barely walk, was approved for a permanent handicap placard and a wheelchair.

I’m sorry I didn’t hear you when you caused muscle spasms in my lower back.  I had more physical therapy and was eventually sent to a pain clinic.  From the pain clinic, I was sent to a chiropractor for range of motion exercise to my lower legs, back and neck.  I was determined to kick ass on the CRPS and hesitantly agreed.  My body reacted violently at that time to movement of my joints and it could take days to recover.  The chiropractor agreed to treat very conservatively.  Manipulation was not ordered as part of the treatment.  That’s not what happened though.  While lying on the table, face down, without warning, his two hands came down on my lower back with a force that took my breath away and pain shot like a knife through me.  Long story short, unknown to me, I had disc pathology with shredding extending into the area where the nerves travel, which I was told by my “angel doc” precluded me from chiropractic manipulation.  I ended up needing a lumbar fusion of three levels.

It was six months after that surgery, having gaining 60 lb and memory so bad I thought I surely had Alzheimer’s disease, Dear Thyroid, that you became angrier than ever before and decided to swell my neck out and choke me so that no one could ignore you any longer.  We have come a long way in those two years; the fluid in my legs is almost gone and my nerves have started to feel very happy about that.  In the midst of all this, sleep apnea was diagnosed, and more recently, I’ve started monitoring my blood sugar, which is now too high.

Dear thyroid, we have been through the best of times and the worst of times.  I do believe the worst of times is over but now at age 50, and two years after Hashimoto’s was diagnosed, you are telling me loud and clear that something still is amiss.  Once again, I feel like I am choking, my neck is swollen, and the problem with swallowing has never really totally gone away.  I also have a protrusion that appears to be coming from just below the thyroid down into the middle of my chest, which I just noticed four days ago.  I’ve been so preoccupied with other problems lately, unrelated to you dear butterfly, that I don’t know for sure how long it has been present, but I know it’s fairly new to the eye.  Maybe it’s just more “fat”?

Dear Thyroid, I’ve never thought it was your fault for any of what has happened, you were trying so hard to tell me you needed help.  I want you to know that we are still a team and I am going to continue to fight for us!  I have a husband who now “gets it”, and with my DT thyamily who I have come to love dearly, I can get through anything!

Lori Callahan

(Bio) – Very stubborn, 50-year-old, mother of two grown children, diagnosed with Hashimoto’s hypothyroidism June 2008, currently awaiting ultrasound because of swollen neck and choking again.

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25 Responses to “I Hear You Butterfly”

  1. Bee says:

    once we get the thyroid diagnosis, it all falls into place- being a practical person, I’m of the opinion that you should look for the easiest fix first instead of the hardest..if your lamp goes out doesn’t it make more sense to look for a blown light bulb or unplugged cord than rewiring the whole house? My diagnosis was found in similar fashion-they thought i was having a stroke with all the accompanying manifestations and all it was was my thyroid -by then, all systems were not on go and i’m still reaping the benefits of undiagnosed disease. Keep up the good fight .we got your back!

    • Lori says:

      Bee – I agree looking for the practical is the way things should be done but I wonder sometimes if that will ever be the case with mainstream conventional docs. I hear you on the stroke, I’ve gone through a cardiac workup a couple times as well on this journey, after which we are now left with the aftermath. That darn little gland can cause so many debilitating symptoms it’s mind boggling sometimes. I’m just glad to be on the other end of the journey now. After making it this far, I know we can go the distance!

  2. Gina says:

    love this letter. im sorry you have been through so much and poor poor butterfly. you are a strong woman, and you will come out on top. im hear rooting you on..yes our thyfamily is amazing, each and every one.please keep us informed and i wish you the best on your ultra sound. big hugs..
    gina

  3. Amanda says:

    Lori,
    This is a great letter, I am so glad you wrote it. I now understand a bit more about what you have gone through, and how hard you have had to work to get on “speaking” terms with your thyroid. It is sad to me that it takes so much to get to that point. Hoping the ultrasound results come quickly and you get answers.
    Amanda

    • Lori says:

      Amanda – it has been a lot of hard work, for sure. It’s amazing what the body has to endure sometimes. I really was never mad at my thyroid, as it did not cause the problem. It was attacked. I’ve been plenty mad at the symptoms it causes and the mistakes and misdiagnoses along the way. It really is sad that it can take so long, that lives can be turned upside down like this, and so much lost in the process. I now know this is why it’s so important to keep speaking out and working for change so that some day it will be easier for others. I can barely stand the thought of anyone else experiencing anything like I did but sadly I know that it still does today. Thank you so much for your support♥

  4. Linda says:

    Lori,
    Your letter actually made me speechless for a while. It reminded me of an episode of SCRUBS where Dr. Cox tells J.D. when doing a diagnosis ‘when you hear hoof steps coming up behind you, you should think horse…not zebra.’ Usually the simplest explanation is the best one…yet we are told it is “bilateral idiopathic polyneuropathy” or depression or or or…when a simple thyroid test explains most everything. I am glad you have started to talk to your thyroid, and have an angle doc. I hope for the best with your ultrasound and that you continue to get better. I am still trying to write my first letter, and you are inspiring me. Best wishes! Linda

    • Lori says:

      Linda – you are so right, the simplest explanation is the best one. I love what you said “when you hear hoof steps coming up behind you, you should think horse…not zebra”. I sure hope some day this is the case. A thyroid disease should always be ruled out first but the problem is the tests being done by so many doctors, they miss far too many people. My TSH was checked several times a year for many years but it was always “normal”.

      Good luck with your letter, I know you can do it and I can’t wait to read it. I’m very glad if I inspired you. I’m inspired by everyone here every day!

  5. Linny says:

    Dear Lori,
    You have had such a journey. The milestones you have crossed, and I can hear you still have your chin up. You are a HERO, a fighter and yet you still sound “sweet”. You have not allowed this, these problems make you bitter. See how beautiful you are, that’s what I was refering to in my butterly essay yesterday,and I am happy to CROWN you Magnificent. Thank you for sharing your story. Thank you for reminding us to never give up.
    Life is worth the fight. Love your spirit, Linny (Linda)

    • Lori says:

      Linny – thanks for your kind and encouraging words. Honestly, I was bitter for a long time but the worst of it was before my diagnosis. Once I was finally diagnosed and realized how much of what I was going through could be related to the thyroid, I felt so much new hope of getting some quality life back. I learned the bitterness was just holding me back and for me it became quite counterproductive. I didn’t have the energy for it, it was so draining. I don’t give up easily and hate to lose, especially when it could have been avoided in the first place.

      I love your spirit too, Linny! And, thanks for the crown:) We are all fighters.

  6. Donna says:

    Thanks Lori for the beautiful letter. You have been through so much, some of which I did not know. I have always admired your knowledge without really knowing your story. Yikes! I’m sorry you had to endure so much for so long. Hope that you get some answers and reief soon sweet lovely thysista!

    Donna xo

  7. Melissa D says:

    Hi Lori, Thank you so much for sharing.
    I agree with the comments above, you are such a strong person, a hero and have not become bitter. (Something I have had to make a conscious effort to counter) It’s shocking to believe that it took so long for Hashimoto’s to have been diagnosed.

    I have related to many of your neurological pain symptoms, but not to as severe an extent & to not being able to find reasons despite different test & dr.’s. I can definitely learn from you. I used to fall asleep uncontrollably for many years as well while hyper/Graves…Now, it is not as severe but myofascial pain/fatigue still enough to interfere with life productivity.

    I am so glad to have you as a friend. You have such a strong spirit, and are so fortunate to have a supportive family 🙂

    Your letter connected with what has been on my mind. I wonder how long and far back these auto-immune symptoms started affecting my life because I can remember being chronically fatigued since my teens.

    I hope that you are feeling significantly better today or are feeling some relief now that you are “managing”.

    Hugs Lori 🙂

    Mel

  8. Lori says:

    Thanks Gina – you are right, I am strong, I know that now, but so are you and everyone else dealing with this disease. You’ve been through so much yourself recently and I appreciate your support and being here to root me on. If I hadn’t found this thyamily and all the resources, I really don’t think I’d be as well as I am right now, as we have to really fight sometimes to get the right treatment after the diagnosis. Together we can all come out on top! Hugs to you too♥

  9. Lori says:

    Donna – glad you liked my letter. Sometimes I ask myself, did all this really happen because when I look at it as if it were someone else, I think how could this happen. It was a very lonely place to be for a lot of years with no satisfactory answers, but I am very glad to be here now, with my legs!

  10. Sarah Downing says:

    Lori, what a horrific health history you have had to endure, yet how you have fought to find out what is truly wrong. I know how knowledgeable you are about these things and how eager you are to research. That in itself is inspiring. You never cease to inspire me with your strength, knowledge and determination. I am always there if you need to talk.

    Love,

    Sarah

    • Lori says:

      Sarah – I’ve gained so much knowledge from you and you’ve been a great friend. After gaining improvement with each step, it made me want to find more and more answers. As you know, so much of our success is dependent on us finding answers and then finding a good doctor to work with us. Thanks for your support and help along the way. You are very inspiring yourself and have encouraged so many people with your column. I’m very lucky to count you and so many others here as my friend♥

  11. Lori says:

    Melissa – sorry that you too have to deal with so much pain too. It is shocking it took so long but when the TSH is in that so called “normal range”, people are not getting diagnosed. They don’t check antibodies in the face of a normal TSH because they wouldn’t treat based on positive antibodies when the TSH is “normal”. And, they don’t test the T3. It’s all so bogus I could scream! Like I said above, I was bitter. I was VERY bitter about so many things that happened that should not have.

    Don’t feel bad about what you feel EVER. I never used to “feel” the emotional part of all this because I couldn’t deal with it, but I know now that it’s okay. It all happens in time. We can only deal with so much and feeling bitter can be part of the process, unfortunately. We have every right to be mad, we just can’t get stuck there. That’s not to say I don’t still get those feelings because I do. I have bad days when I don’t want to deal but it passes and that’s what’s important.

    Neurological pain sucks, doesn’t it. It’s really hard to explain that type of pain, except that you feel like your on fire and you’re being jabbed with a hot poker. The falling asleep problem has been a problem since my teens so I too think it goes back even further. I am starting to drive longer distances now for the first time in my life so that is HUGE for me. I had other GYN problems too that I’m sure are related that go back to my early teens. There seem to be so many crossover symptoms but I know that I have been hyper many times throughout this journey, which is common with Hashimoto’s. The nerve pain is tolerable now but I still am trying to conquer the myofascial pain. I had a lot of trigger points (different than tender points) all over my body and those have resolved. They cause a lot of referred pain. I think some people confuse these with tender points and fibromyalgia. They can occur with fibro but are different. But, the myofascial pain interferes with a lot of daily functioning and the fatigue, like you said, but I am feeling significantly better today and have hope to find answers for the remaining symptoms even further. Thanks so much for your support, it means a lot to me.

  12. LORI! I’m so excited to see a letter from you! You are so very inspiring, I hope you know. I love that you still see you and your thyroid as a team. I love that you’re able to move forward in spite of enduring such a HARD health history. Thank you for being so brave and thank you for sharing more of you with us!

    xoxo,
    Joanna

  13. Betsy Broadstreet says:

    Thank you so much for sharing. I know it’s been a difficult time for you. I thought I was reading something I had written when I found this! My trials have been very close to yours except mine happened all within 2 years. I hope your get the answers you want soon. Good luck!

  14. Lolly says:

    Lori,

    Sorry I am late in seeing this had a bad day yesterday still not great today.
    I can so relate to so much you have said my life ane yours could be so intertwined stemmming back from my teenage years. now looking back wondering if my thyroid was to blame way back then. I remember being on a medication and having to come of it because one of the side effects was thyroid issues I was only 21 then.

    Joint pains skin problems sleep problems even after surgery it doesn’t seem to get better if anything I think it has gotten worse.

    So pleased you were able to share you great letter.

    luv
    Lolly

  15. Lori says:

    Joanna – I’m glad if you were inspired. I believe we need to keep that going! Looking back, I don’t really know how I got through some of it as I think I really was in a daze through the worst of it, but I do know when we are faced with something terrible and we are pushed up against a wall, we have a choice to make. I’m just glad it has worked out and I found the answers I always knew were there.

  16. Lori says:

    Betsy – so sorry that your trials have been similar but to think it all happened in two years! That is so much all at once but I hope you are feeling better and are finding all your answers too. Best of luck to you!

  17. Lori says:

    Lolly – sorry you are not feeling well. Virtual Hugs on the way♥

    Were we separated at birth? The more time that goes on and the more I learn, the more the dots connect. Why would so much be improving now, if it was not connected? I tend to think the immune system was never healthy, which of course lead to all the problems. I can go back earlier than teen years. I was always tired and slept a lot. I could sleep anywhere at any time! I remember falling asleep in the car on the way to my grandparents who were only one mile away, if that. I’ve started having a new skin symptom recently. I have some sort of bumps all over my upper arms. And the last month I’ve lost so much hair, it’s scary not knowing when or if it will stop but i see my doc on Monday. I have lost most of the hair from my lower legs and i’m also now losing it on the arms and wonder if something else is causing it. My grandmother had lupus and lost all body hair. I know we’re at risk of other problems related to the immune system. I do believe everything is related but we might not know what came first or what caused what exactly, although I have my theories.

  18. ashton2190 says:

    lori – thank you so much for your letter. as strange as it is, it is comforting to know that i’m not the only one who went through so much before finally being diagnosed (and so young like me too!) i hope everything is okay with your new symptoms, please keep us updated!

    • Lori says:

      Hi Ashton – it’s not strange at all to be comforted by knowing someone else is going through similar, although I don’t like to hear that someone else is. It helped me so much to know there were others experiencing all this craziness.

      It turned out that I was hyperthyroid, which seemed to aggravate my thyroid and throat. I also had horrible intolerance to heat with constant sweating, fast heart rate, high blood pressure, palpitations, and more fatigue, which really set in as I was writing this letter. The ultrasound came back with no change since last January so that was good to hear. I am feeling better since I wrote this and cut back my dose of medication by just 1/4 grain.

      I am sorry that you too went through so much before getting diagnosed. I hope one day no one else has to go through anything similar, as it can and should be so easily avoided.

  19. Nicole Wells says:

    Dear Lori,

    As I read this, a line in my forehead was creased the entire time. I feel awful that you’ve had to go through this nightmare, and I want to pull out the hair on my head until a solution is found.

    I’m even more upset because my mom has been in the hospital for chest pain, and her cardiologist has been SUCH A DICK about it all. The fact that you had to endure TWO spinal taps because of some asshole doc not doing it right the first time, ugh, I just feel like we get treated like lab rats in docs offices.

    At the hospital, it was the same shit. No quality care from the doc, he was a pure asshole and had the nerve to suggest some of her probs stem from getting “cupping” done (when he saw the cup marks on her back).

    I worry cause I know heart disease is sneakier in women, and she has Hashimoto and has been newly diagnosed with some muscle disease. I get pissed cause I feel so much of her issues are a direct result from having an autoimmune disease, and no doctors seem to be making that hypothesis. I just feel that there is NO DESIRE from the medical community to figure out what causes autoimmune disease, and how it can mess up everything else too.

    You’re very brave, and I’m so happy you’re a part of the DT community!

    xoxo,

    Nicole

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