I live with a few Chronic Illnesses, some I talk about a lot, 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? You can contact me through my About Me – Contact Me page.
I was born with Asthma, my parents had to use special bedding, curtains, and floor coverings in my room. I heard stories about this many times growing up, but Asthma never really bothered me. Occasionally, I may have a small attack, normally when I get close to things I am allergic to or very strong odors. These attacks have been minimal and didn’t interfere with my life. In October of 2012, I caught a cold. After a couple of weeks I still had a lingering cough. Unfortunately, this cough didn’t go away for a long time. I was put on 3 asthma medications plus I used my rescue inhaler and a nebulizer. Just as suddenly as it all started, in early 2015 the bad symptoms just went away. I saw my pulmonologist and had all the tests run again, we decided to try to take me off some of my meds, I went off one by one and the symptoms didn’t return. Now once again I only have an attack once in a while that is easily taken care of by using my inhaler.
Idiopathic Intracranial Hypertension
I received this diagnosis January 2012, however, in December of 2915 I got my records from Duke and it did not mention this diagnosis. I have no idea why, but I’m happy to say this does not bother me that often.
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.” (Idiopathic means “of unknown origin”, they have no idea why I have high CSF)
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. Often people have to have a shunt, mine is controlled by medication most of the time. Sometimes my CSF will spike for some unknown reason and I will have a “blow-out” (I spring a leak), when this happens have severe headaches, often I have vertigo, and blurred vision. I have to go off my medication for a while then everything levels out and I start getting high pressure headaches again and go back on the medication. It really doesn’t bother me much. The blow-outs happen less than once a year.
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 about my journey.
Wheat allergy and possible Celiac Disease (please note, not all people with Celiac Disease have a wheat allergy.) I do have a pretty severe gluten intolerance but it is not known if I 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). I have found that the foods that contain gluten cause very severe Gastrointestinal issues, headaches, and sometimes a rash.
After finding out I was allergic to wheat I decided to stop eating anything with gluten. 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. I refused to start eating gluten again just to have a diagnosis of a disease in which the only treatment is to stop eating gluten. Why put myself through so much pain and misery? I’m already doing the treatment.
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 did have severe bloating and would look like I was very pregnant, the distention hurt (a lot), but not like the cramping like it used to when I ate gluten. I went through a battery of tests, including a colonoscopy, endoscopy, tests for parasites and bacteria, lactose intolerance, fructose intolerance, Small Intestinal Bacterial Overgrowth…..and much more.
On March 15, 2011 I was diagnosed with Fructose Intolerance (more accurately called , Fructose Malabsorption). I’m on a low FODMAP diet. The best information about this condition comes out of Monash University in Australia. I’m still learning every day. It’s not just a matter of what I can and cannot eat, I must also be aware of how much I eat of certain foods. I may be able to tolerate 1/2 cup of a certain vegetable, but if I eat it twice in one day, that could be too much fructose.
Finally in the Summer of 2014 I feel I finally got this diet under control, with the help of Kate Scarlatta’s blog and book 21-Day Tummy co-authored by her. The Monash University low FODMAP app is a great help. I keeps me up to date on all the latest foods that have been tested.
(note, the low FODMAP diet is usually used to help with IBS, but one of the FODMAPS is fructose so this diet helps me a lot and I’ve found that other foods have also been bothering me. This diet is not meant to be followed for life. You are to introduce the restricted foods one at a time to find your tolerance. I’m doing this slowly. It’s very hard when you finally have your symptoms under control to add things back in that may make you symptomatic.)
Yes, I’m Manic Depressive. It’s not that bad though. I’ve been pretty stable for about 18 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 medications 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.
I do have “breakthroughs” with my medication sometimes. Suddenly the medications will cease to work. I have to be very cautious at these times and work hard to get things back under control. It’s harder to be in touch with my feelings now since my illnesses have become so profound. Am I depressed because of the real life things I have to be depressed about, or is it more? Luckily I have a good doctor and therapist who are helping me with this question.
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. When I get excited I have muscle spasms that are painful, when I have an orgasm it can be extremely painful. Sometimes these pains are tolerable, other times I can’t stand it. I’ve been told my Levator-Ani muscles are too tight. I’ve been though physical therapy…and yes they massage those muscles. I’ve had lidocaine injections in those musclesand I’ve also been told I may have Interstitial Cystitis, I need to go to a urologist to be diagnosed properly, but dealing with other issues have taken precedence over this issue right now. Both of these conditions cause a lot of pain. Thankfully, I do not have a severe case of Interstitial Cystitis. I try to avoid the foods that will cause a flare and I have one medication that helps if I do have a flare-up.
Vaginismus In June of 2012 I was diagnosed with Vaginismus. Vaginismus is vaginal tightness causing discomfort, burning, pain, penetration problems, or complete inability to have intercourse. Using Lidocaine gel before attempting intercourse has helped.
Menopause…(my last period was Octopber 31st, 2014) I’m happy to say that my menopausal symptoms are mild compared to many women. I don’t have many hot flashes, however when I do it’s hard for me to tell if it’s because of menopause or because I’m starting to have a vertigo attack. This can make it hard to know if I should take medication for a vertigo attack or not. I don’t have night sweats, I used to, but that was during perimenopause. I’ve always been moody, and I wouldn’t say I’m moodier than before. I do have vaginal dryness, but that is easily taken care of with coconut oil. My
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.) It was caused by long term use of Lithium to treat Bipolar I. I will have to be on medication for my thyroid for the rest of my life.
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. (my doctor has been able to get my insurance to approve 18 Maxalt a month because I can no longer tolerate narcotics….they make me hypersensitive and feel like I’m itching, no antihistamine will help this itch.
I began getting Botox shots for my migraines, and they have helped so much. I still have migraines, but not as often and not as severe. The shots feel like little tiny bee stings. I receive the shots every 3 months. When it’s due all I can think is, thank goodness it’s time for my wonderful little bee stings. : ) (and I hate shots!)
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 June 8, 2011, however I’ve had symptoms for years. My doctor put me on Prozac to try to help with the symptoms. I didn’t stay on Prozac for long it didn’t agree with me. I have since been put on various antidepressants and I was put on a specific drug to help with my Migraines and symptoms during my period. I found changing my diet and using certain teas helped me a lot during this time.
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.
(since my period stopped October 31st, 2013, my symptoms have greatly subsided. I hope this continues)
B-12 and Vitamin D deficiency
I’m taking B-12 injections bi-weekly, and extra vitamin D every day. Many people who have trouble digesting certain foods have vitamin deficiencies, normally B-12 and D3 are the most common, followed by many of the B vitamins. I also take a high dose multi-vitamin to help with this.