I hope 2016 is treating you all well. Spring is almost officially here which is very exciting! I wish this post was a recipe, but it will have to be another update.
Shortly after my last post, my health started declining again… very rapidly. I had some pain in my feet for some time but it became almost unbearable. I also started getting horrible joint pain all throughout my body, swelling, and the crushing fatigue is back. I do not think this is related to the parathyroid disease that I went through. I have a family history of auto-immune diseases RA and MS… and I am very afraid that all the stress I have been through may have triggered something in my body.
I made an appointment with my doctor but at the last minute I was told she called out sick… so I had to see another lady I had never met before. I was very unhappy when I left. She kept telling me things like “You are too young to feel this way” (To which I replied: “Yea well I was also too young for parathyroid disease but I just went through that!”) and just tried to blow me off. I really think she thought I was just a pill seeker by the way she was treating me. But the funny thing is that I did not even ask for anything for the pain. (Because I did not want to be labeled that way!)
So I am currently in limbo… no diagnosis on what is wrong with me, but suffering tremendously. Nothing for the pain, except tylenol which barely touches it. Just making it through the day has become difficult again. I actually had to break down and buy a cane last week, because I am sick of limping around. It was hard to do, but has helped. I have an appointment with a specialist in May, I am praying that they will be able to help me. I was just thinking yesterday that I can not remember the last time I baked something, or went outside to take pictures, or took my kids to do something fun. I am having a hard time with this mentally as well as physically because I will never get this time back. My children will never be this little again. I am very sad that I am missing out and they are not getting the mother they deserve. If anyone has any suggestions for making life easier while raising kids and living with chronic pain & fatigue I would love to hear it, please leave a comment.
I have thought of just shutting this blog down, but surprisingly there are still many views everyday… thank you Pinterest LOL. So I will leave it and hope that one day I can focus on it again. Right now I need to focus on getting better and use what little energy I have for my family.
So after that bad news I must give you all some good news. My husband and I are buying our first house! We have been joking that we feel like “Adultier adults” now 😀 I actually just drove by it again tonight. Maybe that is weird but I don’t care because I am too excited! I am mostly excited about my new lovely kitchen and the yard. The yard is tiny but we plan on turning the entire thing into a garden. I have so many ideas in my head for the new home. I hope my health will cooperate for me to get things done and I hope I can blog about at least some of it as well 😀
I have great news, I am CURED from parathyroid disease.
Although I was not able to make it to Tampa to see Dr. Norman I was able to make it to Dekalb Medical Center in Decatur, GA to see doctor John Kennedy and he truly changed my life.
Dr. Kennedy was able to located and remove the bad gland (tumor) and cured me! He also discovered during my surgery that the first surgeon had actually removed all of my glands except for the bad one. No wonder I was feeling worse after my first surgery, I had no good gland left at all! Because of this Dr. Kennedy had to transplant a piece of the bad gland back in. He is not sure if I will have this problem again in the future, I am his youngest patient ever with this problem. But For now I am enjoying my life again! I have the peace of knowing that if it does happen again, the bad gland will be easily located next time.
Here is a photo of the tumor removed from my neck. A normal parathyroid gland is the size of a grain of rice.
I can not even begin to describe how different my life is now. I am still recovering from this devastating disease and still having some problems because of it, but I am SO much better than before. I am amazed that I can do normal things now, like vacuum the floor and then steam clean it and still have energy for other things lol. It sounds silly but I was so exhausted all the time before.
A few days after surgery I felt like I was living again and not just existing. I told my husband it was like the lights were coming back on.
If anyone happens to find my blog on the search for information about parathyroid disease and you are hesitant about the surgery please don’t be! Just make sure you find an expert. It is worth it, I promise!
I want to say thank you so much for everyone who was there for me while I was sick, everyone who prayed for me and everyone who shared and/or contributed to the gofundme that my mom set up. You all have no idea how much it means to me.
I have been trying very hard to spread awareness about this disease. Most people have never heard of it and most doctors don’t know enough about it.
I know I posted that I would be back with more recipes soon, and it has not happened yet… I feel bad about that, but there is a very good reason. I was diagnosed with an uncommon disease, parathyroid disease AKA hyperparathyroidism. I would really like to spread awareness and tell you all about what it has been like for me.
When I was pregnant in 2013, I felt horrible. Way worse than my previous pregnancy. I had NO energy and so many things made me sick. I also found out that I had several kidney stones in both kidneys. Feeling like crap just happens to some women while pregnant, and kidney stones can develop in pregnancy as well so I did not think much of it. After having our second daughter I was not feeling better. I was not throwing up all the time, but I was still “I feel like I have been hit by a bus” tired. I was feeling very emotional, depressed and my anxiety was worse than ever. Fearing this was postpartum depression I told my doctor and she put me on anti-depressants. I felt a little better, but was still SO, SO tired. I was also having these weird pains, in my arms, legs, hands and feet. I would get episodes of my heart racing, even if I was just laying on my bed watching TV. I noticed that sometimes my eyelids would twitch a lot, I was getting headaches more frequently, I felt very tired during the day yet had a hard time sleeping at night, and I was becoming very forgetful. Over all I just felt very unwell. After several more trips to the doctor and blood work coming back “normal” I decided to do some research for myself. There had to be an explanation as to why I felt like an old woman at the age of 28.
I started searching for my symptoms and the first website that came up was http://www.parathyroid.com. Which is a website dedicated to people with parathyroid disease. I had a lot of the symptoms and I immediately suspected this could be my problem. Based on what I learned from the website and looking back on past blood work, I asked my doctor for the test.
Sure enough I had parathyroid hormones that were higher than the normal range. Although my calcium was still considered in the normal range, it had gone up again. When I had looked back on my past blood work it was steadily going up, which is not normal! They also include teenager levels in the normal range, teenagers naturally have higher levels of calcium. So even though my level was in the normal range for ALL people, it was not a normal calcium level for someone my age.
My doctor immediately referred me to an endocrinologist, and we received great news that we were moving back to Florida. But while I was waiting for my appointment to see the endo something happened. I woke up one day with pain on the right side of my abdomen. It was so bad I could barely walk up the stairs to my bedroom. My husband came home and took me to urgent care. They feared it was my appendix and sent me to the emergency room. But it was not my appendix. After a ct scan and lots of ultrasounds I was informed that I had a dangerous blood clot, and that I was lucky my husband brought me in. I ended up staying in the hospital for 3 days. They were pumping me full of pain medication and blood thinners. They told me that in order to go home to my family, I would have to be able to give myself shots in the stomach, until the blood thinner pills became therapeutic. If I could not do the shots I would have to stay in the hospital. Well I needed to get home to my kids, so shots in the stomach it was! I was also visited by the endocrinologist while I was in the hospital who told me he was pretty much certain I had a parathyroid adenoma and he ordered a 24 hour urine test to be done while I was there. I later found out that calcium is involved in the blood clotting process and this could have been a coincidence but was most likely related to the parathyroid disease. It can manifest itself in so many evil ways.
I ended up having to give myself the shots in the stomach twice a day for 3 weeks. It was not easy… my stomach was bruised all over, the medication burned so badly and caused painful lumps to form under the skin. I had to go several times a week to have my blood tested. All of this was very difficult with how crappy I was feeling, not to mention I had a child in kindergarten and an infant, and my husband and I shared only one vehicle. I had an MRI a couple of weeks after being released from the hospital to be sure that the blood clot was gone and thankfully it was.
We made it to Florida safely after driving for 12 hours two days in a row. The kids were surprisingly well behaved in the car and we were able to see some family on the way. We got settled in and I found a doctor and endocrinologist who accepted my new insurance (which was no easy task). After an ultrasound of the neck and a sestamibi scan, he was unable to find an adenoma but said that I most likely had hyperplasia of the parathyroid glands because they looked enlarged on the ultrasound. He referred me to a surgeon for a parathyroidectomy. This is when they removed 3 1/2 of the glands, and put the remaining 1/2 in another part of the neck or even the arm in case the problem returns and an additional surgery is needed.
Please keep in mind that during all of this time, I was still in a lot of pain and so tired. It was so bad at times that even the thought of moving/lifting my own arms seemed exhausting and impossible. I used to look forward to my hot showers as it was the only quiet time I had during the day, now I thought that it just felt like too much work. Too much work to take a shower or lift your arms?! Ridiculous I know but that is how draining this disease is.
I arrive at the hospital at 5 am on the day of my surgery (less than two weeks ago, at the time of posting this) I was SO exciting thinking “I am going to be cured, and feel sooo much better. No more brain fog, no more pain. I will be a better mom to my girls again, have the energy to bake and take/edit pictures, work on my blog, go to the farmer’s market” and so on.
Sadly, that did not happen.
I have heard stories of some people waking up from their operation and immediately feeling like a million bucks, but others take longer to start feeling better. I figured I was just one of the ones who would take a while. My aches and pains were not there… which was amazing! But I still felt run down. My nurse did not really give me much info about what happened with my surgery and the doctor was in SUCH a hurry to leave he did not bother to come check on me. I was able to go home the next day, luckily the pain was minimal… but it felt like someone was squeezing my throat (from the swelling).
8 days after surgery and I was still not feeling better. I had an appointment to get my stitches removed. The gentleman who removed them was in the operating room during my surgery. I asked him some questions about what happened, and for a copy of the pathology report.
They had taken me into surgery TWICE. My parathyroid hormone level dropped at one point, but was never low enough to be in the normal range. The next day, not only were my hormone levels back up, but they were higher than they ever were before surgery!!! My calcium was down, but with the high parathyroid hormone it will just come right back up. The Surgeon removed my 2 left glands, which appeared normal (so I am not sure WHY my endocrinologist thought I had hyperplasia or WHY the surgeon still removed them upon seeing they were normal) He left a normal looking gland on my right side and “could not locate” the other right gland…. which is probably the bad one that needs to come out. I am very confused by what he did… removing two normal glands and leaving another. Not finding the other gland, did he even look that hard?! This surgeon had fantastic ratings and reviews, I honestly don’t see how because he didn’t seem to care about the patient at all in my case. So here I am… still healing from surgery. A surgery that was for nothing. I am not cured.
The longer you have this disease, the worse it makes you feel, and the more damage it does to your body. If left uncured it can lead to other very serious and deadlyhealth problems. Including but not limited to heart attack, stroke, calcification of kidneys, and different cancers. It even says on http://www.parathyroid.com that this disease does cut people’s lives short.
When it hit me that I am not cured I could not stop shaking. I am just going to feel worse and worse again (and have started to)…. I am now determined to get to Tampa General, they have a wing dedicated to ONLY parathyroid surgeries. The top parathyroid surgeons are there, they do thousands of these operations a year with a very high cure rate. They are the ones who created the website http://www.parathyroid.com. People from all over the world go there to see them. I am not sure if I would trust anyone else to operate on my neck again, especially since re-operations have more risks (Such as nerve/vocal chord damage).The only thing stopping me is money. It is very expensive but I NEED to get better for my wonderful girls, my husband and my family. My mom created a fundraiser to help me get there:
Please share this link, and please help if you can. Even $1 would get me closer to my goal. I really appreciate any help. I want to be able to enjoy life, keep up with my kids, and I want to be able to continue this blog. But first I have to get better. Please keep an eye on your calcium, especially if you have any of these symptoms. Thank you so much for reading 🙂
Our new family member ❤ This little beauty was born October 2013. Last year I had a high risk pregnancy and other health issues at the same time, and now I am very busy with two little ones and still dealing with a couple of the health issues. I really appreciate all of the views and comments and I have been trying my best to respond when I can. I know I have been majorly slacking with this blog, and I am sorry… But I have some ideas that I can't wait to try and recipes I can't wait to share. I hope to get back into the swing of things soon 🙂
I have seen a few posts on Pinterest about homemade sidewalk paint, so of course I had to make some myself. Most recipes I came across said to use water, cornstarch and food coloring. I really didn’t like that idea, food coloring stains SO easily! So after a little researching I noticed some people saying they used non toxic washable paints instead. (I like this kind by Crayola) If you have young kids you probably already have some laying around anyways! Yes they sell washable sidewalk paint but it is more expensive for just a few colors. Why not make your own? It is cheaper and so easy! My daughter had a blast helping me mix everything together 🙂 I did not see any exact measurements for using washable paint, only to use equal parts water and cornstarch. So I just decided to experiment and I think it came out great! See how bright they are?!
Ingredients for each color:
1/4 cup cold water
1/4 cup cornstarch
1 tbsp washable paint
In a cup, stir 1 tbsp of paint into 1/4 cup of cold water
Slowly add in cornstarch while stirring water/paint mixture
You could probably just stir with paint brushes but since I didn’t feel like digging up that many I just used popsicle sticks I already had in the kitchen. Adding the paint to the water first makes it easier to incorporate. Some people just put everything in a jar and shake it up. If I had extra jars I probably would have done that because we have some left over and the jars would be perfect for storing it for next time!
You will need a brush with rough bristles that holds a lot of paint. I bought the one in the picture below at Michael’s craft store. It was only a couple of dollars for 3 of them and they were perfect for this! The handles are also thick and easier for little hands to grip. These or these brushes also look like they would be perfect!
Beware of hot pavement, if you have a shaded area that would be best. Now take those little bits outside and have some fun! If they get messy just hose them off! 🙂
Happy Cinco De Mayo! What better day to share this recipe? 🙂 This is incredibly easy and probably the best taco sauce I have ever tasted. The best part? Nothing nasty added in, like preservatives. My five-year old was licking this off of her plate tonight at dinner lol. I found the original recipe here but I did not follow it exactly.
Here is what you will need:
1 cup tomato sauce (I used organic)
1/4 cup water
1/4 tsp chili powder
1 tsp cumin
1/2 tsp garlic powder
1/4 tsp salt
1/4 tsp paprika
1 tbsp white vinegar
Combine all ingredients in a small saucepan, whisk together. Cook on medium-low heat for 15-20 minutes, whisking occasionally. That is all, could not be easier! This is a very mild sauce, if you want to make it spicier you could add more chili powder, maybe some cayenne or red pepper.
This sauce would probably be even better made a day in advance so the flavors have more time to meld together. Store in the fridge.
We had it on homemade Mexican pizzas tonight, YUM!
I just wanted to let you all know that I am still here! I have been sick lately and have also been dealing with an old injury that is acting up. I have to have a procedure done on my right eye tomorrow. I probably will not be doing another post for a little while, but I will be back! 🙂