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.
Asthma –
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.
Meniere’s disease
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.)
Biplolar I
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.
Pelvic Pain
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.
Hypothyroidism
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.
Chronic Migraines
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.
Cluster Headaches
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.
Picnic with Ants 
I was curious if you had seen my post about Gluten Ataxia (http://lifeischange.wordpress.com/2011/04/12/gluten-ataxia/). My mother had Meniere’s Disease for years (I’m not sure if it’s possible to be “cured”, but she is doing a lot better now), and I’m aware of the overlapping symptoms with some of the other issues that run in my family (Fibromyalgia, etc.). What I read about Gluten Ataxia also sounds similar. Since you already know you have Celiac Disease as well, I wonder if you may have Gluten Ataxia and if it maybe exacerbating your Meniere’s symptoms.
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No, I hadn’t seen that post yet. That is so interesting!!
I actually don’t know for sure that I have Celiac. I have a wheat allergy, and after going wheat free I found out more about Celiac and decided to go gluten free. My doctor believes I most likely have Celiac, because my symptoms got so much better. (Including the strange rash I would get, that they now think was dermatitis herpetiformis.) I decided not to start eating gluten again, just to be tested. (plus, a lot of people I know who have Celiac had been having trouble with their insurance after being “labeled” with Celiac.) Since the treatment is the same, I just decided to stay gluten free. (I think I need to change it in my bio. that it is suspected that I have Celiac Disease.)
Thank you for bringing my attention to Gluten Ataxia. I will look more into it!
I too was much clumsier than I am now. And my hands don’t tremor as much. I was on a drug for a long time that could cause tremors, so I always assumed it was that….who knows?? I also hate escalators, or anything that moves me…ick.
Thanks again,
wendy
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Well, we don’t have all the same troubles, but just the fact that you can understand what it’s like to deal with multiple illnesses has helped alleviate some of the unspoken loneliness I’ve often felt. I wish I had the energy to write more, to share my journey as you have so others could benefit as you have me.
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Molly, How very sweet. I find it cathartic to write, so that’s what I do. Lately, I haven’t been as up to it as normal, this last procedure has caused a lot of pain. But it’ll get better. (always have to believe that!) I hope what you are going through settles down soon, and you can feel better. I do understand the loneliness. I feel it more from my in person friends. I just don’t have the support I long for. But I found it here. Write when you can, when it helps you. Remember to take care of you!
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I stumbled across your blog and I wanted to know about the “ants that bite”…
You are not alone.. It seems like we have somewhat similar illnesses,
except for the hypothoiridism and chronic hip pain…
I dont know what I wanted to say with this comment, I just felt like saying something. Cause I’m glad I’m not alone. It makes me feel less crazy and more normal I guess.
You are inspiring.
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I have IBS and IC so I must be really careful on what I eat. I have been gluten free and have followed the Fodmaps Diet for the past 6 months. I am much better even though I so miss chocolate, coffee and sweets in general!! I started Pelvic Floor therapy with an amazing therapist and this has significantly helped my IC. She convinced me to start Yoga which I have grown to really enjoy to stretch out those tight muscles. Just some tips I thought I would share.
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Lisa,
thank you for sharing.
I too am on a gluten free and low FODMAPS diet, but without as much success. I’m going to see a dietitian next week….hope she can help me.
I had Pelvic Floor Therapy for over a year, it seemed to be helping at first, but after a while (as with all physical therapy for me…it’s strange) I stopped getting better and even reverted to my previous pain.
I used to do Yoga, but with the Meniere’s it’s hard. I can’t stand to bend over, never have my head below my waist, can’t move my head much….ect.
I am working on things. but I have to admit a lot of my issues were put on the back burner for a long time because Meniere’s over took my life.
Thank you again for sharing your story.
I do hope to get to the UNC Pelvic Pain Center in the not too distant future, and hopefully the Meniere’s will settle down and I will be able to do Yoga again…I miss it.
I also found water therapy to help a lot.
good luck
wendy
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Wendy, I found your blog and I can really appreciate what you are going through. I have been to the doctors and specialitsts more times than I can count over the past year. I also suffer from multiple chronic disorders. Here is my list:
anemia
hypothyroidism
arthritis
bursitis
tendonitis
tenosynovitis
ibs
chronic headaches
carpal tunnel
hip and shoulder pain
anxiety
fibromyalgia
sometimes I wish that I had cancer or something more visible so that people remember that i have daily chronic pain that never goes away. Sometimes I feel alone with this all.
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Kerri,
I promise you are not alone.
Many of the things you’ve listed I have been diagnosed with also. Some I haven’t mentioned in my list…arthritis (osteoarthritis, in my neck mostly). I’ve been told I had bursitis, tendonitis,…but I’ve been told so many things about my hip/pelvic pain I just don’t know what to believe any longer. IBS…mine is caused by the Fructose Intolerance. Carpel Tunnel – in both wrists (but it only bother’s me occasionally, thank goodness). Shoulder pain with neck pain (I had a tumor in my right arm when I was young, so my right arm is 2 inches shorter than the left, that causes me to be off, so pain. I also fractured my 7th Cervical Vertebra, that’s where I have most of the arthritis). I was diagnosed with Fibromyalgia, but found when I cut gluten out of my diet the symptoms almost completely went away, so I don’t claim that any longer, however some days I feel like it’s still a force in my life). I also have PTSD, because of the Meniere’s.
I didn’t repeat things I know I have on my “ants” list.
I hope you don’t feel so alone now.
I do understand the feeling wishing you had something more visible, or even something that will end (yes fatally, but end just the same). I too have pain all the time. I’ve learned to deal with a lot of it, but often it is too overwhelming to be able to tolerate without help. I have chronic persistent headaches, with the hip and pelvic pain…and shoulder and neck…shoot, I hurt more than I thought I did. : ) The migraines i get are horrific. I’m excited to be going to a headache specialist next month!
I try hard not to let all my illnesses get me down. I used to exhaust all my resources trying to fight it all, but finally I realized I had to accept things. This is part of me. That doesn’t mean I’ve given up the fight, but I used to concentrate all my energies fighting and didn’t enjoy any part of my life. Now I take advantage of every day I feel well enough. Each day I feel well enough i do something enjoyable. It has made a huge difference in my life.
I firmly believe everyone has to find their own way to deal with things like this. So how I deal with it may not be the best way for you. However, I think it’s VERY important for everyone who has chronic illnesses to know they are NOT alone!
There are so many of us…too many of us…please feel to reach out to me any time.
hugs to you.
wendy
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It seems to me that when one person has one serious medical problem they often have more than one. I suspect most of this is genetic and there are triggers. One day we will have the understanding of how to deal with this but right now it can get pretty hairy for those of us with more than one problem. The good news is that Meniere’s is supposed to burn out over time – mine pretty much did. Maybe yours will improve. The Migraines? I dunno. I used to have Cluster Headaches and they are gone – although I am still a headachy person. I’ve had problems with bursitis and tendonitis and heavens knows what else – mostly I’m over them. I’m fortunate that the fibro is easily treated (for me) with an antidepressant I tolerate well. Keep on truckin’ – it is all any of us can do. In time, some issues may resolve – or not. We can only ask for the strength to endure until tomorrow.
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I’m still truckin’ on. But this has been one hell of a month…wait more than a month. I know that they have said that people often “burn out” with Meniere’s, unfortunately, not everyone does. But my hearing is about totally burned out, so I can’t worry about that any more. (no I’m not worried about that at all)
I also have chronic migraines….they say they may get better after menopause…they might not. The Botox helped, so I look forward to getting on a regular schedule with that. I also have Migraine associated Vertigo (MAV) but it different. Hard to say why, but it is. With Meniere’s there is no reprieve while it’s going on, with MAV, I can often find a spot where it’s less spinny and I can get through it.
I also have Idiopathic Intracranial Hypertension. That means my Cerebral Spinal Fluid Pressure is too high. But lately, the symptoms I’ve been having have been for low pressure.
That’s a big reason I wish I was home with this happening. The doctor’s here would have to play catch-up, and Duke isn’t here. By that I mean, all my doctors are in one place and work together, I can’t see that happening here.
If I’m not better by mid January….a lot better, we are going home. some how.
It will get better.
I’m just sad it got so much worse right now.
(you know I just answered this in response to It’s So Bad….I’m so off today.)
Thank you for your wonderful thoughts. this too shall pass….hopefully on the good way.
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Hello, have you looked into Lyme Disease? A lot of people with lyme are first diagnosed with all kinds of things and then they do their own research and find that lyme is the thing that ties it all together and is behind *everything*. Lyme can give you everything you have on this page. The problem is that not much is known about it, primary care doctors dismiss it entirely and the testing it highly unreliable. I urge you to research it thoroughly, a good place to start is the IDSA website. Lyme is a bacterial infection, so if you take steroids you make everything better in the short term but worse in the long term. The good news is, there is treatment available. Some people are cured and nearly everyone improves significantly if they get ‘adequate’ anti biotic therapy. I’ve been on it for 3 months and I’ve gained so much quality of life.
Decima x
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Decima
I come from the rural parts of South Carolina, so Lyme Disease is one of the first things people are tested for when doctors start to scratch their heads.
Yes, I’ve been tested, more than once actually. No lyme disease here.
I hope you improve to the point you were before.
wendy
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Hi Wendy, I was diagnosed (3) years ago with Celiac Disease and since then have read all I could find on Celiac Disease and the ongoing research. One way around your not getting tested for CD and having to resume wheat in your diet, would be to have the gene test. If you carry the gene, then that’s a pretty good indication that what you’ve been experiencing is CD. But the best way is to have an endoscopy which shows villous atrophy. Check out Cyrex Labs … they are considered the best for this type of testing. Too often people get tested at their local lab and because they were not tested for the right things, often get a negative result, So it pays to deal with a lab that is trusted in this field. (Google “Cyrex Labs” and see what their website says…). Once you find out if you have the gene, your doctor may not think it necessary to test for gluten.
This is a response to Kerri, who wrote in Feb., 2012 — Kerry, so many of your symptoms are related to Celiac Disease, I would hope in the intervening 7-8 months since, you have found the cause of your problems. Anemia, thyroid issues (be they hypo or hyper), IBS and Fibromyalgia are often mis-diagnosed and are actually Celiac Disease; migraine headaches and joint pain can also be attributed to Celiac Disease. As I mentioned to Wendy, ask your PCP to contact Cyrex Labs for testing …. whether it be blood work for diagnosis, or for gene testing (like for Wendy).
I hope this information will prove helpful to you gals, and GOOD LUCK!
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Thank you Sandy.
I haven’t had the gene test, but have considered it. I may do it in the future. I know the treatment for CD is a gluten free diet and I’m not going to stray from that diet, so I’m not too worried. If I have CD or a gluten intolerance, it doesn’t matter, I’m not eating gluten.
When I stopped eating gluten most of the symptoms that they said were fibromyalgia went away. I don’t think gluten is the cause for fibromyalgia, but I do think they have many of the same symptoms so one can be misdiagnosed.
It hasn’t helped my thyroid issues. But I know my thyroid was damaged due to long term use of Lithium.
Thank you for your suggestion.
I do plan on getting the gene test at some point. I want to have the whole DNA testing done, that fascinates me.
Thanks again for coming by and reaching out.
wendy
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Sandy,
Don’t know why this didn’t show up for me to approve before now.
I have considered the gene test, but my insurance won’t pay for it, they also won’t pay for test out side of their network…so Cyrex Labs are a no-go too.
I personally do not feel the need to have a Celiac diagnosis. The treatment is a gluten free diet, and I’m not going to eat gluten…ever! I know it hurts me, so it will never be in my diet.
thank you for all the information.
I hope you understand why I’m not going to pursue this any further at this point.
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Have you considered trying the autoimmune paleo diet? It’s more strict that the regular paleo diet, but it might help. I am researching my own issues now, and I figure it’s worth a shot.
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Jen,
I hope it works for you.
I have fructose malabsorption, so I have to really keep a strict balance of the foods I eat. Many fruits and veggies are off the list, or they are I can’t eat them in conjunction with other foods, or I have to watch the amounts…it’s very hard. Also, I can’t have an gluten. I know Paleo is no grains that the gluten wouldn’t be a problem, but working around the veggie restrictions would. And if that wasn’t enough, I don’t eat meat. It’s a personal choice.
I do hope you find that it helps you. The low FODMAPs diet has helped my gut more than I can say. (this is the diet for fructose malabsorption)
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My Dear Wendy, Hearty Regards and Love. …Am simply Amazed at Your Energy and Enthusiasm in spite of So much Illness. I pray that You may be Well.
In my life, I have had a Heart Attack, Tuberculosis Eight times, (that really means 7 recurrences), Four attacks of Typhoid, the Most Severe Back Ache, a Cold which lasted 17 months, Migraine, and have gone through Expert Counselling for a Nervous Breakdown as We popularly call it here.
I also have had Anxiety attacks, even within the past few years.
But now, approaching my 70th year, I am Very Well indeed, both physically and mentally! I am a Great believer in Charismatic Retreats. Would suggest that You go through those.
Regards and Love. 🙂
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I’m so sorry I thought I approved this comment long ago. Thank you for your kind words. I’m sorry you have been through so much. Thank you for sharing with me.
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Thank You, my Dear Wendy! Very nice of You. Love and Blessings to You! 🙂
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Just wondering if you’ve ever heard of or checked into Ehlers-Danlos Syndrome? Almost all of the conditions that you listed are comorbities or symptoms of it. It is a genetic connective tissue disorder.
A common misconception is that you have to have stretchy skin to have EDS, but you do not.
Just trying to help, I had no idea what it was until I got diagnosed with it at 37. I just knew I had a lot of different things wrong with me and I felt like they were all connected, I just never knew how until then.
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Thank you, I haven’t considered Ehlers-Danlos Syndrome. I have a friend with it and her symptoms are much worse than mine. I don’t think I have connective tissue problems.
I’m sorry you have it. I hope you can be treated well.
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You are truly amazing Wendy, truly……….I can’t believe all you’ve been through and are going through. Thank you for sharing your story
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Aw, it just is, ya know? 😊
Thank you for reading it. 💕
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You’re welcome 🙂
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