My Story Rose

My name is Rose and I was diagnosed with Hypoparathyroidism in 2015. I am 43 years old and live in the Taranaki. I am married to my amazing husband who I met five years ago. I have four children aged 24, 20, 18 and 16 (now). My youngest child (who will be 16 now) passed away. I have three gorgeous grandsons, aged 4,1 and almost 1. My oldest grandson has Cerebral Palsy and Epilepsy. He is an amazing little man.

I work 32 hours per week as a Receptionist. I have also just started a second job. I am helping my Niece in the Occupational Health and Safety Industry. It is a casual job, so it’s not too much. I am also planning on starting a Make-up Artistry and Hair Stylist Course soon. I love make-up and it would be a good little nest egg that I could do from home. I come from a beautiful family.

My parents are my inspiration and I have two brothers and two sisters. I am the baby of the family. I enjoy walks, the outdoors and spending time with my husband and family. I also enjoy camping, as it is a nice peaceful kind of holiday. My grandsons are my treasures. I can't really explain the feeling, but they are super special.

My diagnosis with Hypoparathyroidism didn't come over night. There were different medical issues that lead to it.

I went to my GP in November 2014 to discuss a cyst which was annoying me. I wanted to have it removed. During the consultation, we discussed my health in general. I mentioned that I often got heart palpitations. I wasn't too worried about them. My Doctor immediately ordered tests and referred me to a Cardiologist. I also had blood tests done. Abnormal results started to show. In March 2015, I saw my Doctor and she spoke to me about my low level of Calcium. She queried Hypoparathyroidism. I had no idea what she was talking about. I was prescribed Calcium and Calcitriol tablets.

In June 2015, I had started experiencing cramp like pains in my legs along with sleeping problems and anxiety. I was referred to a Specialist. I was diagnosed with Hypoparathyroidism in the early stages in June 2015. By the end of the year, the condition had worsened to its full state.

I have regular blood tests. I used to go weekly but now I only go monthly or if I have a new symptom. I am quite used to the tests showing abnormal results. My GP is such a good Doctor for following up and finding out what was wrong with me. However, she knew absolutely nothing about my condition. She doesn't specialise in Autoimmune Conditions and said it was actually the hardest thing to learn in Medical School. However, I am grateful to her for not just pushing the blood test results aside.

My main symptoms are tiredness and spasms in my legs. Tiredness is the worst symptom. I could have two hours sleep or ten hours sleep and I am still tired all the time. To be quite honest, I am so tired of being tired that it really just gets me down at times. Sometimes I am just so tired that I don't want to do anything. I have always been a busy person. I get up and do what needs to be done but now it takes longer. Because I am tired all the time, my concentration levels are not 100%. I forget things in a split second. It is frustrating but I just deal with it.
Spasms can be painful and I find I have them more depending on what I have eaten. Over Christmas I had spasms in my legs quite badly. But I was eating like you do at Christmas. All those scrummy ‘not good for you’ foods. The spasms occur mainly by my knees and upper thighs. It is something I will have to deal with for the rest of my life. I have come to terms with the condition I have and I am learning to just take it as it is. I do what I can to prevent it from giving me worse symptoms.

One of the most dangerous symptoms of Hypoparathyroidism is spasms in my throat. I don’t ever want to experience that. It will block my airways and I won’t be able to breathe. I really don't want that to happen. There are many symptoms of Hypoparathyroidism. I am lucky as I only have two symptoms at this point.

I believe that with correct eating I can just stay at the point that I am at now. I definitely don't want to lose part of my eyebrows, it’s not like I have much anyway! And I don't want to have a weight problem because I will feel worse about myself.
Depression is also a symptom of this condition, which absolutely makes sense to me.

If I get a tummy bug with vomiting I will have to go to the hospital to be put on IV (intravenous) Calcium. My body struggles to hold on to Vitamin D and Calcium. Vomiting is a medical emergency for me. Luckily I haven't had that yet. No one can ever change the amount of Calcium I am prescribed, as that will make me sick with Kidney Stones etc. It’s not much fun is it! I have foreign invaders called Antibodies, which are confused in my body. They attack my good organs instead of bad bugs. The Thyroid has such a big responsibility for our bodies and how our bodies and organs work, so getting destroyed is just not good.

At first I was just really confused. I didn't know what Hypoparathyroidism was at all. I knew that Antibodies were attacking my Parathyroids. I didn't know anything about Thyroids either, so it really was a big learning curve for me and it still is.

I will have this condition for the rest of my life. I know it can get really serious and I also know I will be on medication for the rest of my life. I have a Medic Alert bracelet as well as a Medical Card on me at all times, in case anything happens and I can’t talk.

I researched online and came across a website called Autoimmune New Zealand. I emailed the founder of the website and she was awesome. She gave me names of books written by Dr Kharazzian. These were very helpful for me in understand my condition more. Although the books are for Hashimoto Disease, it is pretty much the same as Hypoparathyroidism. I took what I learnt on board, although it is hard to remember everything. Natalie from Autoimmune New Zealand also put me in touch with others with the same sort of condition, which was great. I spoke to a couple of ladies and learnt what they do to help themselves.

One lady did weight lifting for a couple of years, which had really helped her. My condition is pretty much the same as hers, although my condition is rarer. It affects our muscles and weakens them, so weight lifting is great to keep strength up. They both spoke about foods to avoid, which is pretty much all Gluten. Interestingly, last year I went completely Gluten Free for one month. During that month my Parathyroid Hormonal Glands were normal. However, I slipped back into eating Gluten and the Glands went back to being abnormal. That was a sign that being Gluten Free is important to me as it helped me so much.

I try to be Gluten Free as much as possible now. My husband has also changed to Gluten Free with me, which makes it easier. I made a promise to myself that if I go out for dinner I will eat whatever I want. I don't want this condition to take away those treats every now and then. The reason why Gluten is so bad for me and many others is because Gluten looks like my Thyroid Glands to Antibodies. The Antibodies attack my Thyroid Glands instead of the Gluten.

If you read Autoimmune books you will see that diet is major factor in helping us stay healthy. I would think diet is major for anyone, but having an Autoimmune Condition means we are in more danger of getting very sick if we don't eat properly. I also take Multi Vitamins daily. They have components in them that are beneficial to me, especially the Magnesium, which helps with the spasms. I started taking Joint Tablets but I don't take them all the time.

I have found my feet are quite sore in the mornings. I am unsure why, but assume it is something to do with my condition. I see my Specialist once a year now. He will review my condition and if it is progressing. What I find with Medical Professionals is that they think with very medical minds and ignore other things that can help us, for example, diet and exercise. I have found the Autoimmune Groups on Facebook, the websites and books are great for talking to others and learning about what works for them and what doesn't. One thing might be good for one person but doesn't work for others.

I think in the end we are all warriors! We get by with our illnesses because we have to. And we stick together because we understand each other, even when our illnesses are not the same.