I’ve been thinking about the years I was so ill. Suffering from an unknown disease that increased my heart rate, gave me constant, relentless anxiety and made me feel I was suffocating 24 hours a day. I also had insomnia.
We had just returned from a two year Air Force deployment to Turkey. We had our first son Jonathan at Incirlik air base. Towards the end of Doug’s assignment he wanted to re enlist but Uncle Sam was downsizing and said no. So when we returned home and our feet touched US soil we were unemployed and without a home!
Fortunately my parents had an extra bedroom and let us move in with them until we could find our footing. During this time Jonny was an active toddler and I tried my best to wrangle him in and help keep my parents lifestyle semi normal! But of course he was an active normal boy and eventually was nick named “Jonny No-No!”
One Saturday I went to a wedding with my folks. It was about an hour away and we took Jonny with us. I wore a beautiful pair of gray Nine West shoes and a raspberry forties style dress. Perfect for a wedding but not for chasing after a two year old! By the time we got home that evening my feet were throbbing and I was totally exhausted! I went to bed early and decided I would never do that again!
The next morning my symptoms began.
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I couldn’t catch my breath. It was a miserable feeling and my pulse was racing. I pushed through for days thinking it would pass, but it didn’t, in fact it got worse. Since being discharged from the air force we didn’t have medical insurance. My mom took me to her general practitioner and she probably footed the bill. I sat on the exam table and he took my resting pulse. 125. He immediately had me lay down! He asked a few questions, drew blood and sent me to a ENT doctor who said their was nothing wrong with my ears, nose or throat!
And so the journey began trying to find an answer.
I struggled daily not to pull my hair and run out of my skin. The problem was I couldn’t get away from the constant torture of anxiety and the feeling I was suffocating. One nurse told me I was hyperventilating and handed me a paper bag to breath in! Another doctor told me it must be stress and I should try reading the Bible. I told him I read the Bible and he handed me a prescription for Xanax. I wore heart monitors and had echocardiograms. My heart was healthy, just beating too fast. I had blood tests. Nothing.
The Xanax was my only relief. It helped. Eventually after ten months with my parents, Doug found a job in Northern California and we moved up there trying to put our lives back together. The two of us, a toddler and a bottle of Xanax.
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I was raised in a charistmatic church that believes in the gifts and power of the Holy Spirit to heal. I never stopped getting prayer for my health, but it became discouraging when I didn’t get better. God where are you?
Be strong and take heart, all you who hope in the Lord. Psalms 31:24
After moving to northern California and needing a Xanax refill I found a doctor who told me it was addictive. I had no idea! I was angry to find out I had become dependant on it and actually needed more now to curb my symptoms. I left the doctors office and decided to go cold turkey and stop taking the drug. What a nightmirror withdrawel is. Not only did I have withdrawel pain but my symptoms return in full blast! I was in a dark pit made of loose sand and I was trapped at the bottom, trying to claw my way out. The despair was so deep and all I wanted was relief. My mother came up for a few days and I remember not being able to sleep and finding her on the sofa. “Mom I feel so bad,” I cried. “Come sit with me” she answered. I layed my head on her shoulder and cried. Her comfort was a memory I will never forget.
Soon after that I found alcohol would help me cope. I would wait all day to have a 9pm drink and then another before bed. It took the edge off, but was no cure. I would endure day after day, after day, watching the clock for that drink to relieve my anxiety and shortness of breath. I remember waking up in the morning and thinking “No, not another day. I don’t think I can bare it…” It had been 15 months since my symptoms started and I was not getting better. Life had become torture, except for my sweet boy Jonny who gave me a reason to get out of bed. Doug was exceptionally kind, but had no answers.
“The steadfast love of the Lord never ceases. His mercies never come to an end. They are new every morning.” Lamentations 3:22-23
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Doug found a job at a glass company and we were living in a run down apartment. It was all we could afford. I was in no condition to work. Because of our meager finances Jon wore cloth diapers. I can still see them hanging across the balcony railing, blowing in the wind. Life had to go on, even if it was crawling, and then I found out I was pregnant!
We had medical insurance now with Kaiser. I saw a doctor who confirmed my preganacy and also sent me to a specialist to see why I was in such poor health. They ran tests and came back saying my thyroid was overactive. Grave’s Disease. Just a blood test with a doctor who knew how to read the results. He precribed medications to help my pulse and block the overactive thyroid. “After the baby is born” he said “we will see if you need to have your thyroid removed, but for now it is best to wait.” Miraculously in my second trimester all my symptoms went into remission!! I completely forgot about trying to breath!!! I could sleep and my pulse was strong and much slower. The anxiety was gone. No more wine at night.
Grave’s disease is an auto immune disorder. When you are preganant your body shuts down the auto immune reflex to fight against foreign objects, like germs and babies. This helped me so I could carry the baby to full term. It was a wonderful time feeling better and looking forward to a new life. Maybe I was cured?
Our soul is escaped as a bird out of the snare of the fowlers: the snare is broken, and we are escaped. Psalms 124:7
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My pregancy was going well. I was labeled high risk and had blood work twice a week! I felt like a pin cushion! We were happily making plans for a new baby and sibling for Jon. I was a little nervous about having to take medication while pregnant, but I was told I needed to or my baby might not make full term.
Doug came home for lunch and as we often did, we turned on the “700 Club” with Pat Robinson and Ben Kenchlow. If you remember they would pray for the audience and sometimes give a word from the Lord to someone watching. All of the sudden Ben started speaking a word of knowledge and boy did it get my attention! “There’s a lady out there and you’re pregnant. Your name is Mary. No Mari. No Mariranne. Well, one of those names and you’re worried about your baby. The Lord says “The baby will be just fine. The baby will be just fine.” Doug and I looked at each other and KNEW it was a word for us. Because of the unusual spelling of my name it was always pronounced wrong…and I was called Marianne, Mari and Mary.
Not long after that I had a routine 7 month ultra sound. We heard the technician say “humm” and excuse herself from the room. Two doctors came in and looked at the ultra sound. They started talking amongst themselves. We were no longer there, only the monitor. Another set of doctors appeared and we were surrounded by white coats hemming and hawing. After a few minutes the nurse told me to get dressed and the doctor would speak to us in his office.
I sat down on the wooden chair facing the doctor with Doug by my side. I was afraid. Suddenly the word from the Lord rose up from deep inside me. The baby will be just fine. The baby will be just fine.
We faced the doctor and he said “Your baby has a teratoma on his scacrum. It will need to be removed.” He explained to us that a teratoma is a tumor made up of extra misalanious cells that can cluster during a baby’s formation. It was about 4 ounces big and on the bottom of his tailbone, blocking his anus. FEAR. “The baby will be just fine! The baby will be just fine!!!” Now I knew why God given us that word. We clung to it and the peace of God enveloped us.
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The Spirit of the Lord is upon me, Because he anointed me to preach good tidings to the poor: He hath sent me to proclaim release to the captives, And recovering of sight to the blind, To set at liberty them that are bruised; Luke 4:18
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We waited for the baby to get closer to full term before having a c-section. The doctor advised it would be better for the baby not to have any trama during birth. Jonny had been born fast and naturally in 5 hours, so I was scared to be cut open. Plus knowing my baby would have life saving surgery the day after his birth weighed heavily on my mind. I would sit in the dark, rocking slowly in the wooden chair with my hands on my stomach praying for him. The Word from God comforted me, but we still had a road we had to walk down.
He was born at 4:30 in the afternoon at a Sacramento Kaiser hospital with the best doctors on staff. Dr. Mars performed the surgery. He had just done the exact same surgery on a newborn only a few days old. The poor baby had a 7 pound tumor. Dr Mars said, “you rarely see this kind of thing, and I just treated a similar case”. We were glad he had perform this at least once, before cutting our baby!
Baby Luke came through fine, a 4 oz tumor removed and left with an angry crisscross incision across his red bottom held together with staples. He was in the ICU for 10 days. As soon as I was able they had me push my IV and do the C section crab walk down the long hallway to the Neo Natal room. There was my sweet baby hooked up to wires sleeping on his tummy with his painful incision exposed. It was heart breaking. Eventually we were able to touch him, and then hold him. Everything was well, and his body healed. His bowels fuctioned normal. “The baby was just fine.” Except for his scars.
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We had to drive back and forth for about a week to visit him. We were about an hour south and it was difficult. On our way to Sacramento I felt my symptoms returning. Shortness of breath, and anxiety. Oh no! No please no! I had enjoyed feeling well, even with all the baby stress. I didn’t want to go back to that constant torture.
Luke came home and thrived. I nursed him for 6 months, trying to enjoy my new baby even though I felt miserable. ( I look back at family pictures and I barely reconize myself. Just enduring, trying to smile….) My doctor sent me to have a radiactive iodine treatment to my thyroid. It was suppose to cure everything. I went to the basement of the hospital and they gave me a large pill to swollow. “That’s it!” they said. “Now go home and don’t hold your baby too close to your neck for 48 hours, the radiation isn’t good for him.”
I was given no instructions what to do next.
Months later I still didn’t feel better. I had no follow up with the doctor. I was lost. Maybe I fell through the cracks, I don’t know. Or we had a medical insurance change from a new job? I had no idea. I didn’t feel better or know what to do about it. I was lost.
Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.
2 Corinthians 4:16-18
* * * *
Doug took a promotion and we were transferred to Bakersfield. It was a good opportunity to be closer to my parents and family. Luke was about 15 months old now and Jon 4. We didn’t have medical any longer because of the job change. I was still feeling terrible and I knew I had to see a doctor but no one would see me without insurance. Finally I found a doctor who would let me pay cash for an office call. I told him my history with my thyroid and the radioactivie treatment, so he took my money and ran a blood test. A few days later he told me my TSH was 15 and working fine. Later I learned he didn’t know how to read the test! He was a cosmetic doctor. But I didn’t know that. I felt hopeless.
“Surely your goodness and love will follow me all the days of my life, and I will dwell in the house of the Lord forever” Psalm 23:6.
Finally I called the Samson Institute in Santa Barbara and they said they would see me if I had a credit card or someone who would pay for me. The doctor ordered blood tests, just like all the rest, but he undertood the results. My thyroid was now low, not high. It was in need of hormone. He gave me a bottle of synthroid and told me to take 10 pills right away! “You may feel a slight buzz” he said ”but we want to get your numbers down fast.”
We finally had insurance again and I found an Internal Specialist in town. Dr Abraham helped me get my Synthroid dosage right and bring my blood tests into a normal range. But I still had anxiety, panic attacks and needed alcohol to sleep. I didn’t understand what was happening. I should be feeling better. I was enduring each day, one minute at a time. I tried to keep busy. I ran track and painted bedrooms. I felt better when I was moving, but as soon as I would sit down I was overwhelmed with symptoms. I feel so bad for my two boys having a mother who was just getting by. It was hard to laugh and play with them when I was in pain. Sometimes I would just sit on the patio and stare into space for hours.
For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11
* * * *
“That sounds like anxiety.” Dr. Abraham said after I told her how poorly I still felt. She prescribed a new SSRI drug called Celexa and within days I felt better! It worked so good, and so fast without being addictive! My brain chemicals were out of balance and it helped them fire correctly. Thank you Jesus after 5 years of suffering I had relief. It was my miracle! I went for an hour without thinking about breathing! A day! A week!! A month!! I was able to go back to work and enjoy the things I used to do. Never take your health for granted.
Now years have past and I have still have struggles with my symtoms. No one knew that Radioactive Iodine patients have the lowest quality of life compared to those who have their thyroids surgically removed. Maybe they hadn’t done the studies yet? But even after radiation you still have Grave’s Disease antibodies that can attack your eyes and produce thyroid hormone. Plus the stress it puts upon your body!!
“Overall, patients with treated Graves’ disease had
worse thyroid-related quality of life scores than the general population…
The radioactive iodine therapy group had worse scores for goiter symptoms, hyper- thyroid symptoms, tiredness, anxiety, depression, emotional susceptibility, impaired social life, impaired daily life, and impaired sex life than the antithyroid drug and surgery groups. In addition, the radioactive iodine therapy group had worse scores in hypothyroid symptoms, eye symptoms….” American Thyroid Association April 2019.
Thyroid disease also attacks your eyes.
“If you have Graves’ orbitopathy (GO), a thyroid eye disease resulting from Graves’ disease, your symptoms may worsen after RAI.
Scientists think this happens because RAI suppresses the regulation of T cells² involved in the immune system. So, your body can still make the antibodies that produce thyroid hormones to excess.”
I had eyelid reduction surgery too from years of swollen eyes. My eyes still hurt and feel like they will pop out of my head when I am over medicated or have a bad headache. It’s part of the “quality of life!” with Grave’s Disease. But at least I have found a way to live. Somedays are better than others, even some months and then a few bumps in the road, but never as bad as before.
“A merry heart doeth good like a medicine!” Proverbs 17:22
* * * *
I don’t know why God didn’t heal me. Believe me we prayed and prayed and prayed. If it was a demon we cast it out! We spoke healing in the name of Jesus and annointed me with oil. I knew He was there, and His Word comforted me, but when I finally found medication to help me cope with anxiety it was an answer to prayer. I give the glory to God. I am so thankful to be off that road of suffering. But I will never forget it.
For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. 2 Cor. 4:17
Living with Grave’s Disease has changed me. I am much more compassionate person to those dealing with unknown or prolonged sickness. Never tell someone it is sin or a spiritual problem. Just sit next to them with their head on your shoulder and pray. Let them cry if they need to. It’s all right. Don’t give up. Keep seeking, keeping asking and keep knocking. Keep praying.
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Auto Immune diseases often cluster. Along with my hypo thyroid I have asthma, Ezema, Edema, Diverticulitis, IBS, restless leg syndrome and leg ulcers. I am on steriods for Polymyalgia Rheumatica which has it’s own problems like weight gain, intestinal trouble, and insomnia. I’ve been in the hospital for a ruptured ulcer in my colon. I’ve been on so many antibiotics just trying to get a grip on the infections I so easy get. But I continue to press on. It may not be perfect now, but I am thankful for the progress I’ve made since the first days the illness started.
Looking unto Jesus the author and finisher of our faith; who for the joy that was set before him endured the cross, despising the shame, and is set down at the right hand of the throne of God. Hebrews 12:2
When the perishable has been clothed with the imperishable, and the mortal with immortality, then the saying that is written will come true: “Death has been swallowed up in victory.”1 Cor. 15:54
