I live with a few Chronic Illnesses, some I talk about a lot here, some I don’t talk about much at all. I thought I’d give you a run down of some of the things I’m dealing with, some of you may have something similar going on. If you do, please feel free to get in touch with me, let’s talk. We all need to talk about things now and then don’t we?
Newest Diagnosis – February 2012 – Idiopathic intracranial Hypertension
As you can tell this is a pretty new diagnosis. Here is a link to the Intracranial Hypertension Research site, they have a lot of information. http://www.ihrfoundation.org/ From this site you can find this:
“Intracranial hypertension literally means that the pressure of cerebrospinal fluid (CSF) within the skull is too high. “Intracranial” means “within the skull.” “Hypertension” means “high fluid pressure.” To understand how this happens, it’s helpful to look at the basic anatomy of the brain and skull, as well as the process in which cerebrospinal fluid is created and absorbed.”
There is much more information. It’s a bit complicated….mainly we have to get the CSF pressure down, either by medication or by a shunt. Eventually, most people have to have a shunt.
I’ll probably add more to this page at a later date, or add a page of its own. I’m still learning a lot.
**One thing about my condition….they originally, for over a year, thought I had low CSF pressure. I have a rare case. I kept presenting with symptoms, then I would go in and have a Lumbar Puncture but by the time I’d get an appointment my pressure would go too high and I would blow out leaks in my spinal column and leak out fluid, so when I had the test, I tested low. They would patch the leaks and I would feel better. Over and over again. Finally, they thought, this might be happening. So when I first presented with symptoms they got me in the next day, and I had a high pressure reading.
This one has its own page dedicated to it so I won’t really go into it here. I talk about this one the most because, let’s face it, it gives me the most trouble. (at least right now.) Please see the Meniere’s Page for symptoms and details.
Wheat allergy and possible Celiac Disease (please note, not all people with Celiac Disease have a wheat allergy.) *** I recently had the gene test and found I DO NOT have Celiac Disease!! I do have a pretty severe gluten intolerance but do not have Celiac Disease.
Gluten is found in wheat, rye, and barley (and often in Oats due to cross contamination because of the way they are grown). For me gluten causes very severe Gastrointestinal issues, headaches, and sometimes a rash.
After finding out I was allergic to wheat I decided to start eating Gluten Free. I started feeling much better! My doctor thinks I have Celiac Disease, and wanted to test for it, however, he told me I would have to start eating gluten again for the diagnosis to be accurate.
Before they found out that I have a wheat allergy and a gluten intolerance they thought I had Fibromyalgia, IBS, Chronic Fatigue…
So now I’m on a Gluten Free Diet. I felt much better for many years. The diarrhea stopped, the body aches stopped, the fatigue gone…
Enter Fructose Intolerance (Fructose Malabsorption) – 2011
In August of 2010 the diarrhea came back, but this time I don’t have the horrible pain with it. I went through a battery of tests, including a colonoscopy, endoscopy, tests for parasites and bacteria, lactose intolerance, fructose intolerance…..and much more.
On March 15, 2011 I was diagnosed with Fructose Intolerance (actually, Fructose Malabsorption). I’m still struggling to get this diet straight. If you’d like to find out more about this journey please check out my other blog: Wendy Cooks, Recipes for people with Gluten and Fructose Intolerance.
Along diarrhea I’ve gained 35 pounds. I gained 30 of it in the first 2 months. No one can tell me why. (I am happy to say that the diarrhea has disappeared on most days, but I still have the extra weight I need to figure out how to get rid of.)
Yes, I’m Manic Depressive. It’s not that bad though. I’ve been pretty stable for about 16 years now. Before I found out I was a wild one. Looking back, it really explains a lot. Now, I just have to take my medication, and keep it monitored. I’m very in-tuned with myself though. If anything is the slightest bit off, I am calling my doctor. I do not understand people who will not take their medication. I know a Manic episode can feel wonderful, but you aren’t yourself, and why would anyone risk a depressive episode? I had a friend who refused to take her meds because they made her gain weight. That is just irresponsible. If you have that big of a problem with the weight gain, work with your doctor to get on another medication.
This is one of the most mysterious problems that I have. I have pain within my internal pelvic area and my tailbone area that they can not figure out. If you would like to know more about this I would be happy to talk with you about it, but I’m not sure how to talk about it on a public blog. I’ve been told my Levator-Ani muscles are too tight, and I’ve also been told I have Interstitial Cystitis. Both of these conditions cause a lot of pain. Thankfully, I do not have a severe case of Interstitial Cystitis.
Chronic Hip Pain
In 2009 I had my right hip operated on twice for a torn labrum. I am still having pain, and a popping sound from this hip. After seeing 2 specialist and 4 physical therapist this has not been resolved. I have been diagnosed with hip dysplasia, but it isn’t to the extent that it should be causing as much trouble as I’m having. My latest doctor wants to operate again to see if he can relieve some of the pain and see what is going one (he is not the surgeon who did the first two surgeries.) I’ve decided to wait on this until we can get the Meniere’s under control.
This doctor believes that some of my Pelvic and Tail bone Pain may be caused from my hip dysplasia. He has put me on Limbrel, this is a pharmaceutical food supplement that helps with inflammation, and it has helped a lot. It also helps reduce the pain on days when I’m able to work out in a warm pool.
This is mainly controlled by medication. (at least that’s what they tell me.)
Sometimes I’ll have a migraine every day for more than a week, then sometimes I’ll go a week or more without having one. I always seem to have more than 12 a month. I know this because I take Maxalt when I have one and I can only get 12 a month and nearly every month I run out.
I’m sure some of this is connected. Hopefully, we’ll figure some of this out and I’ll find a way to live a more “normal” life again. Right now, all I want is to be able to stop the vertigo from the Meniere’s, and hopefully still be able to hear.
Premenstral Dysphoric Disorder.
I was just diagnosed with PMDD this past week. (June 8, 2011). My doctor put me on Prozac to try to help with the symptoms.
Some people think that PMDD is just PMS, but it’s not. My symptoms begin with ovulation, and finally end with the end of my period. That means I have symptoms for 3 weeks out of the month. What a pain…literally. To find out more about PMDD check out the definition on Wikipedia http://en.wikipedia.org/wiki/PMDD.
B-12 and Vitamin D deficiency
I’m taking B-12 injections, and taking extra vitamin D every day. Many people with food intolerances have vitamin deficiencies. I also take a multi-vitamin to help.