Everyone ready for a quick update? Currently I am in the process of being diagnosed with high intracranial pressure, or intracranial hypertension (IH for short). It could be caused from a bunch of different things. The 10 pounds I haven't lost since I had Matthew, my IUD, a blockage, and who knows what else. It is something they diagnose me with if they can't find any other source of the IH and symptoms. My double vision has worsened - now I see double when I look up and down, and sometimes my vision is not right just looking normal. It gets pretty stressful looking to the side and seeing 12 kids instead of 6! But that may give anyone a heart attack!
IH is compounded by my brain that's fallen back a little and lays lower than it should. Symptoms of these two things put together are headaches that run down my shoulders and arms and then up around my head and down my back, whooshing noises (like I hear my heartbeat) in my ears, double vision, and blackouts when bending over or standing up fast. I haven't ever actually blacked out yet, but I sure get dizzy.
I just recently found that one cause may be the IUD I have in. The neurologists are looking into that. I'll have it taken out yesterday if it has a chance of fixing the problems. The weight loss - well, I've been trying to loose weight since I was 12. Last year I tried really hard and didn't loose pounds or inches and ended up aggravating my knee which caused me to undergo surgery. My knee is not 100%, I'll probably need a knee replacement before it is, so I'll need to balance exercising with keeping my knee as healthy as possible. Sigh... weight is so frustrating sometimes!
So for now, the solutions to the problem start with attempting to loose weight. The research is that people with IH have an extremely hard time loosing weight. Something to do with the side effects of the disease and chemical levels. So then it's medications which block the brain from creating as much spinal fluid. These medications have some nasty side effects and balancing the correct dose that decreases the CSF enough but not too much is tricky. Because of those factors, medication does not work for everyone. However we will try very hard to make one of these work. The third solution is major surgery. The brain surgeon would create more space in the lower part of my skull and possibly place a stunt in to drain the fluid. I don't know the details because this seems like the most unlikely solution they would go to and there are so many factors. Plus I really don't want to think about it.
So, there is my update! I saw a different Neurologist - Dr. Zimmerman, this past week who is going to work with my Neuro-Ophthalmologist who I see this week, to coordinate more testing (MRA, MRO or something like that), and more blood tests. Sigh - our insurance deductible just reset so we will get to start paying out moola to some lucky company. :)
It has been tough but here is what I KNOW. I KNOW that the Lord is providing a way for me to accomplish everything that I must do. I KNOW that he is aware of my family and their needs and what I am needed to do. In a priesthood blessing I had a while ago, I was not blessed with healing, but blessed that I would be able to accomplish everything I needed to do. And I am. But NOT alone. I have had so much help I almost hesitate to list it. I've had meals, people cleaning my house, watching my kids, picking me up and taking me to appts. and the hospital, calling or emailing or facebooking to check on me, and the best thing - helping me take care of my family. The Lord didn't tell me I would be able to do everything on my own. He just said I would be able to do it with His help. And I am only with your help. Thank you so much for all you guys do for me. I am finding such a great support system of friends and family and I appreciate it more than you know! I will be able to do everything I need to through the atonement and relying on the Lord and those he sends my way. This is a great blessing I have learned. I am so grateful that my needs are known and met.
I have the best friends anywhere! Thanks everyone! :)
4 comments:
Wow! What a lot to learn. What a blessing the atonement truly is. For someone who has always done so much for others, I am sure you have struggled to receive so much help. We all have to be on the receiving end at some point, and yours is truly a blessing from all the giving you give and have given throughout your life! I will continue to pray for you and hope that an end will be in sight shortly. You are such a trooper. Thank you for sharing your beautiful testimony, too.
Good timing, Diane. I was planning on calling you today to check up and see how things were going.
Wow! This is a lot to take in, I'm sure. It's answers though, and I'm sure that's somewhat comforting. You seem so positive about it and that makes me happy.
I love you and hope testing, treating, and dealing with it all goes as smoothly as possible.
Throw away any hesitations in calling me to watch your kids. It's really all I have to offer these days, so please use me :)
Diane - I'm so glad you have a diagnosis now, as a starting place for treatment and hopefully a cure. It is great to hear how much faith and optimism you have. You amaze and inspire me, and you will continue to be in my prayers. I love you!
I am at a loss for words! I'm glad you finally know what it is. I will continue to pray for you. I can't imagine going through all of this while still being a mom. I'm glad you have so many wonderful people around you to help you.
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