Living with a Disconnected Brain

It’s a month ago since I did my blood test. It was nerve-racking to wait if the Vitamin D would work again after taking the test. I got after my last post even sicker. Sunday night I could hardly walk or even talk, had uncontrollable spams and was in a lot of pain. But after taking the first few pills the spasms slowly went away and in about 3 days I was almost spams free again. But it took me about 2 weeks to completely recover.

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Day 3 without vitamin D.

I woke up having heavy spasms, my hands trembling, my bones in my hands and feet are extremely painful. My lips are numb, I can’t think very well and my vision is vague. When I get up I’m completely stiff. Klaas needs to help me to get dressed. I feel hopeless, terrified, hopeful, angry, happy and I can’t wait till I can get my blood tests on Monday.

My moods swings from relieve that we finally found the cause of my symptoms to despair. What if my blood is normal? What if the doctors are right it’s just a extreme Conversion Disorder. Tests in the past didn’t solve anything. So why now after 7,5 years.

The last couple of weeks I have been reading a lot about Hypoparatyroidism. I didn’t even know we have parathyroids a month ago.

When I was a child I was often tested for thyroid problems. I was often tired and all kind of aches, but nothing was found. I know they tested me vigorously on thyroid problems in the first few years of my illness. But I can only find evidence of testing my calcium levels in 2006, but I don’t have all the blood tests results at home. I can understand why this condition was not at the top of their list, especially for the first couple of years. My spasms where irregular. I had so many problems it was hard to see the tree through the woods.

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What is Hypoparathyroidism?

Wikipedia: Hypoparathyroidism

Illu_thyroid_parathyroidHypoparathyroidism is decreased function of the parathyroid glands with underproduction of parathyroid hormone. This can lead to low levels of calcium in the blood, often causing cramping and twitching of muscles or tetany (involuntary muscle contraction), and several other symptoms. The condition can be inherited, but it is also encountered after thyroid or parathyroid gland surgery, and it can be caused by immune system-related damage as well as a number of rarer causes. The diagnosis is made with blood tests, and other investigations such as genetic testing depending on the results. The treatment of hypoparathyroidism is limited by the fact that there is no artificial form of the hormone that can be administered as replacement; calcium replacement or vitamin D can ameliorate the symptoms but can increase the risk of kidney stones and chronic kidney disease.

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(this blog is written before I had to temporarily stop with the vitamins)

And suddenly you realize your whole world is upside down. I was used to being handicapped, having pain, being tired and tormented with spams. But the spams have subsided to a “buzz” in my muscles. I get more energy every day and suddenly I can multitask again. I was already a fast thinker, even those last years, but now most people can get their head around how fast my ideas are coming. Away goes the brain fog.

There are still loads of problems and I need to rest 2 times a day. But my world looks so much brighter. What to do first? I’m terrified that it will be over tomorrow. What if it is temporary again? I want to take advantage of all my possibilities but I shouldn’t overdo it or I might pay the price.

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The next day (21 august) I walked with Klaas a bit over the moors. He ran after Casper, tripped and didn’t get up right away. I thought he was playing but apparently not. His ankle looked like it swallowed a tennis ball. Klaas was very shaken but could still walk. We slowly walked or stumbled back to the car where we called his GP. We could come by right away. The short ride back was very painful and all kind of horrible scenarios went to Klaas his head. At the doctor’s office we got help from a grumpy doctor. Who was very angry that we hadn’t cooled his ankle. The fact that ice cubes don’t grow on the moors was no excuse apparently. Klaas had nothing broken but probably his anklets torn. So we went home with the order to get his foot up and cool it. He had to come back in 5 days after the swelling had gone for a new assessment.

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Double Recovery

After a few days I felt less pain in my back. The physiotherapy worked! What relieve. Klaas had to go back to work. My mom and dad stayed nearby for a while to keep an eye on me. The next couple of weeks I slowly got my groove back. One by one I could lose the pills. I started to be up more and walk around. I still was very fearful of a bleeding but it stayed away. Finally I was completely in menopause.

ruinewoldAt the end of July I was well enough to leave the house for 2 days and went with Klaas to a B&B nearby. Time for some romance and free time. We hadn’t been on vacation after all and our last real vacation was in March, our small honeymoon. We went shopping, out for a romantic tapas dinner and lots of sleeping in.

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Support network

On Friday we got a letter of the pain team. I could come on 21th of July. No way! So I called them and I explained again that I had conflicting medication. Suddenly I could come next Monday. In the letter was a paper for me to fill about my pain. I recognised it for my recovery program years before. It was made for unexplained pain, not for pain caused by a temporary item like for instance a broken arm. So I wasn’t getting my hope up that they would help me.

My GP came by that night. It was a heavy conversation with loads of tears. He wanted me off the Tramadol right away. It’s a very useful drug for short periods he told me, but longer than a couple of days and people can get completely crazy. He wasn’t surprised of my hallucinations and despair. The problem was the other pain medication was on a lower level, not so useful. But I was really willing to try. So now the maximum dose of paracetamol and dyclofinac.

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