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Welcome to blog. My name is Maria, and I’m a forty year old wife, and mom of two boys, ages ten and seven years. Forty snuck up on me like a thief in the night. .
. . one day I was having a blast in my twenties, and suddenly I find myself highlighting my hair to cover the gray that is so determined to take over my natural color - like weeds in a garden. And my body, well, it’s been through more in the past forty years, than most people go through in a lifetime.
But, I am a different person for it all: I am medically wiser, a more compassionate person towards others who suffer with medical problems, and I have become a pro, so-to-speak, when it comes to communicating with doctors and their medical staff. I have found my voice when it comes to my body. And I know how to be an active part of my own healing, both emotionally and physically. It has taken years to get to this point, because even growing up with my father as a physician, and my mother a nurse, I never realized how important of a role we play in our own healthcare.
And we do. Just because they are the doctor, the professional, I have come to realize that their degree on the wall doesn’t mean that they don’t make mistakes, miss things, overlook things, or simply do not have all the answers. True, it is their job, to get to the bottom of our problems and medically treat our problems, but they need us, in order for them to do it effectively and successfully. Follow my website, and you will hear a tale of all medical tales - how I overcame some of the most unusual medical problems, how I learned to use my voice in my own healing, and how you can too.
Well, the results are in. . . the sleep study revealed, "Nothing"!
I knew that is what they'd see. My condition is so rare and so difficult, that no one has any answers for me. They recognized that I do not sleep good, but they had no answers as to why. I did not have any bouts of sleep apnea that night at the study, but then again, how could I with only getting a couple of hours of sporadic sleep?
Whatever. . . .
I'll never repeat that test. It was simply too miserable! I had another strange thing happen! This past Wednesday evening, while on the phone with my sister-in-law, I lost my hearing in my right ear.
I panicked! I have never had that happen. My ear started feeling strange inside, going numb while on the phone, then ringing, then. .
. . my hearing was gone! I hoped it was short-term and went to bed.
I awoke at midnight to my hearing even more gone, and ringing in both ears that was so loud, I thought someone had crashed symbols in my ears. I started to cry, frightened out of my mind. Tim (my husband) looked up on line about spontaneous hearing loss and everything he could find said it is a dangerous medical emergency. So we immediately started searching for who to see the next morning about it.
I'd seen an ENT last year for sinus trouble, and made an appointment with him first thing in the morning. We went. I found out that in fact I had lost hearing in that ear, and that he thought it was "Cyst-related" because my ear canal was numb. A virus wouldn't do that, he told us.
So, his answer was to put me on Prednisone, 30 mg once a day for a week, then decrease. After one or two doses, my hearing started to come back. Although it still rings periodically, it is better. I also had a static sound the third morning, in my ear, like a radio station set off the station.
I have also heard "chirping" in my ear when people talk. It was so frightening and such a nightmare that I was sure I was going to be deaf in that ear. My left ear was damaged years ago at the age of seventeen. I have permanent ringing in that ear and don't hear well out of it, so I thought I was going to have to rely on that ear the rest of my life.
Thank God the Prednisone helped! After having had to take Prednisone a few different times over the past couple of years, I have found that it helps my head symptoms feel better. It does not feel as tight up there, like the brain is being squished. And the Prednisone makes my thoughts much clearer.
I don't care what the doctors say about there being no noticeable swelling on the brain, on film, I know there is some kind of tightening that causes an array of neurological symptoms. My head (or brain) will feel like it is being squished like a grape in the skull. It can get unbearable at times. I have now put a note in to my neurosurgeon and have asked him if he will allow me to stay on it a while.
On it, I have more energy, I feel more alert and alive, etc. The only thing that it doesn't seem to improve noticeably, is my balance. I wish that even would get better on Prednisone. I hope to get the answer I want, this week.
Well, it has been several weeks since I last updated everyone on the goings on with my case. I hope my readers have been able to get caugh up on all the writing I was doing there for a while. The latest news is that I had my sleep study this past weekend. I had to go to Duke Saturday night; my sister-in-law went with me.
It was the single most annoying experience I have ever had. I will not do another sleep study, unless I am desperate, or dying. They hooked me up to a ton of leads. It took my nurse close to an hour to get all the wires connected.
I had two belts wrapped around me, one around my chest, and one around my stomach. They were tight and uncomfortable. I had a nasal canula in my nose to monitor my breathing through it, and a flap that hung over my upper lip to monitor my breathing out of my mouth. I had tape on on my cheek bones holding the canula in, and a clip on my index finger to monitor my apnea and heart.
I don't know how they expected I would get any sleep. I slept for about an hour and a half before waking up with the nasal canula killing my nose. The nurse came in and changed it to a smaller one, but now, I was awake and would stay awake for the next several hours. I laid there feeling nauseas, nervous, and claustraphobic.
There was no clock allowed in the room, so it was a guess as to how long I stayed awake, but it was hours. Finally, I dozed back off, having to trick my mind into thinking that I had nothing on me. At 5:45, Bobby came in to tell me the test was over. I know it was 5:45 because I asked him when he woke me up.
It took him a fraction of the time to take everything off, and it felt great to get it off. I was so tired, however, that I could hardly think straight. Once everything was off, I went to my sister-in-law's room and wanted to get ready to go, but she had hardly slept either, so she was wanting to get a little longer in bed. So I left to go to the lobby and read, though I could hardly see straight.
We left around 8:30, grabbed breakfast at I-hop, and headed home. I was never so happy to be going home as that day. I do not know much about the test, though Bobby said they did get some good information. He said there was nothing found that was too horrible, but they did get some info.
I am anxious to hear what it is they saw or found. I will update everyone as soon as I know. Although I am glad to have had it done because it is just one more test I will have had, but I will never do another. .
. at least not for a long time, or unless deemed extremely necessary. They are very unnerving tests, and is the last thing I need, is to have my nerves more frazzled than they already are. Giving the Readers a Chance to Catch up for a While I have been telling my story of not only the present day happenings with my health, but of other problems I have encountered over the years, from my Charcot-Marie-Tooth, to my Mitral Valve Prolapse, and even my kidney stones.
I have encountered and had to overcome a lot of medical problems over the years. I have had to see countless doctors from one end of the spectrum to another. It has not always been easy, being me, though I would like to say that I have had a decent life. I am very glad I was given life.
Despite it all. Now, I want to give my readers a chance to read all the entries I have added over the past few months. As I have explained in previous posts, I also write reviews for othere websites, so on my website, there is generally a review, and then a post from me. I won't be doing any more reviews for a while, they will, in the future, just be my own personal posts.
I hope you will continue to follow my story. I will write a post after I see my Neurosurgeon this Tuesday and get my MRI. But I will not be doing quite as many posts as I have been recently, in order to give my readers a chance to get caught up, and have the ability to absorb what they are reading. I do not want to overload my readers.
Thank everyone for following my story. It has been a long, crazy, and emotional ride over the past 40 years of living, trying to overcome and learn to live with, and deal with one medical condition after the other. I hope that as I tell my story, that what I have gone through and continue to go through, will be beneficial to others, even if it is just one person. Look for my next post next week to see what the doctor decides to do about my Chiari surgery.
. . . Eating healthy, for many people, does not come naturally.
Most times it is just habits that we have formed over the years, that has us eating all the wrong things. We need to retrain our brains into wanting to eat halthy, and craving the right foods. To start, people need to figure out what kind of eaters they are: Snackers, emotional eaters, etc. There are ways to retrain your mind into craving the better, healtheir foods than what you have been used to eating.
At auntciasgarden.com, you can learn about changes that can be made to help you become a healthier, happy eater, rather than eating the wrong things that can add weight. Visit auntciasgarden.com and learn how to become a healthy eater. Don't Let the Doctor Tell You how You are Feeling One thing I've learned over the years is that a lot of doctors will try to tell you how you are feeling, or how you should be feeling. Even though you try to tell them differently, alot of doctors will turn a deaf ear to what you are saying.
This is especially true if they are not as familiar with a case like yours. Many doctors will try to go along with whatever their medical books tell them. They a lot of times will only take what they have learned form their book, and read from their book, and they do not always think out of the box and realize that not every case is the same, and each case can produce different symptoms and have "out of the ordinary" symptoms. Rather than listening to the patient, they want to, sometimes, tell the patient how the they are feeling, not feeling, or should be feeling.
And this can be frustrating for the patient. I have found that it is best to write everything down beforehand. Go in armed with a list of your symtpoms. Write anything down, that is relevant to your case, your symtpoms, your questions; anything and everything.
Also, do not let a doctor try to tell you how you shuld and shouldn't feel. If you do not feel the way he describes, say so. Do not just agree because he is the doctor and you feel like he should know. Be honest.
The only way they are going to be able to affectively treat you, is by being honest about your symtpoms. Doctors will, most of the time, do their best to try to get to the bottom of situations. But if you are not completely honest about your symptoms, they can miss things, overlookthings, or not learn about a problem that they have not previously had any experience with. Always be honest, and do not let them control the situation, or try to runover you with how things should be.
You tell "Them" what is going on with you. . . .
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