August 17, 2004

Ask Heather!!!

I want you all to feel free to ask me any questions you may have! Don't feel silly or embarrassed, my main focus of this blog is to educate. The best way to have your questions answered is to ask! Topics that I am familiar with include: (but are not limited to LOL)

1- Hearing impairment. I was born deaf in my left ear due to birth defects, and have limited hearing in my right ear. I've been diagnosed with bilateral Mondini's Dysplasia (aka Mondini syndrome, mondini defect) which is a birth defect of the cochlea. I also have no middle ear bones in my left ear, or cilia hair. In my right ear the cilia hair are short. I have a theory about my mystery fluid (seen in earlier posts) that I believe I am leaking cerebrospinal fluid into my ear canal. I do have a hearing aid for my right ear, but I tend not to use it. I have used a bi-cros hearing aid that had a microphone that I wore on my left ear, and a hearing aid on my right ear that amplified sound and processed the sound from the left, to make it seem like I had hearing in my left ear. It didn't work out well, since my brain has never had sounds on that side before, I became confused. I also have used ALDs (assistive listening devices) in college and had problems with professors allowing it in the classroom, which is against the law, by the way. I'm fluent in sign language, mainly because my hearing loss is progressive, and I may someday become deaf. I do have some experience with Deaf culture, however, because I have some hearing and use a hearing aid, I am not welcome.

2- Fibromyalgia Syndrome and all related problems. I was diagnosed with Fibromyalgia (FMS) in 2000 and I've dealt with several of FMS' friends: Irritable bowel syndrome (IBS), Chronic Myofascial Pain Syndrome (CMP or MPS), Headaches, fatigue, sleep disturbance, muscle twitching, burning sensations, fibrofog (lack of mental clarity or attention span), and several others. I've experienced mixed reactions from both family and physicians on this, ranging from almost-too-empathetic to its-all-in-your-head (IAIYH syndrome) and that itself is very difficult to deal with. I suppose most of the problem is because there are hundreds of people being diagnosed every day, it is thought to be 'popular' or 'wastebasket' meaning that either everyone is being diagnosed to be with the 'in' crowd (pain as a fashion statement?) or that doctors, being all-knowing and all-mighty don't know what to diagnose you with, so they say you have FMS.

3- Depression. I've been diagnosed with many forms of depression, by many doctors who may or may not understand depression in it's entirety. The diagnoses that I agree with are Major Depression, mild agoraphobia (which isn't really depression, but I only seem to have a problem with it when I am depressed) suicidal tendency/ideation, and I'm not sure about dysthymia, but it is possible. I've been on countless anti-depressants, even some anti-psychotics, which haven't been the cure-all promised. I have many problems with my past abuse in childhood and in my marriage which have contributed to this, I'm sure. I've attempted suicide before, and I very rarely engage in cutting, or self-harm.

4- Diabetes. I was diagnosed with type 1 diabetes in 2001. I had been misdiagnosed as hypoglycemic in previous years, which led to my hospitalization in 2001 with diabetic ketoacidosis in a coma. Many problems surround the fact that many practitioners believe that thin=type 1, overweight=type 2, but that is not accurate. I am an overweight type 1. Deal with it. I hate to put it that way, but most medical practitioners are absolutely dumbfounded, mainly because they aren't current on diabetes and the advances made recently. There are, in fact, more than just type 1 and 2, there are actually closer to ten types. Much confusion is surrounds the 'typing' because researchers have changed the names so often. I have to tell many medical practitioners that I have Insulin Dependent Diabetes Mellitus (IDDM) Type 1 auto-immune adult onset diabetes with insulin resistance. If you put all of that together with what most of them know, it is a contradiction in terms. I am on two types of insulin that I inject myself, and I take avandia. Now, another misconception is that Avandia is for type 2 diabetes. No, it is for insulin resistance. I will be looking in to insulin pump in the future, since I take multiple injections per day. Believe it or not, the injections are not as painful as testing my blood sugar. The fingersticks are by far more painful, most of the injections I give are not felt at all (as long as I wait for the alcohol to dry first....if the alcohol is wet and I stick myself.....OUCH) There is so much to know with diabetes. I have to watch for nerve damage, kidney, liver, eye damage, neuropathy, infections of any sort, stress, my A1c count (it looks at your blood sugar range over the last three months) and I have to be careful of Diabetic Ketoacidosis (DKA). It is a confusing, expensive, and time consuming disease. Not only that, but incurable and fatal.

5- Other things that are not as prevalent in my life: Degenerative disk disease, degenerative joint disease, osteoporosis, stage I ovarian cancer, and a caregiver to my husband who had Hodgkin's lymphoma.

I am here not only to express my feelings about these things, but also to give you information and help you in your quest for health, so ask away!

Posted by HeatherLeigh on August 17, 2004 02:51 PM

Posted by: Judy in AZ at January 17, 2005 06:19 AM