I Hear You Butterfly
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!
(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.
Tags: Dear Thyroid Letters, hashimotos misdiagnoses, hashimotos symptoms, hypothyroid blog, hypothyroid bloggers, hypothyroid community, hypothyroid patient letters, hypothyroid support, hypothyroid symptoms, I Hear you Butterfly written by Lori Callahan