One out of two adults suffer from at least one chronic condition such as back pain, irritable bowel syndrome, migraines, autoimmune diseases, depression, cancer, fibromyalgia, chronic fatigue syndrome, etc.
Many of these people suffer in silence, because you can’t see anything wrong from the outside.
Until recently, most of the people in my life had no idea I’ve been sick.
A couple months ago, I wrote a guest post about my sickness and long-term readers of Blacksburg Belle wrote me saying that they had no idea. And, many told me about their own chronic illnesses.
I haven’t posted anything about my illness on Blacksburg Belle until today.
Why? Part of me thinks that some people will consider me less than if they know I’m sick. And, part of me thought I’d have a “cure” by now and it would be a thing of the past.
At first, I didn’t have much to offer, so if I did post about being sick, I didn’t know what to say except that the state of health care in this country is awful and I feel like crud most days. Who wants to read about that?
I want to keep this space positive and I don’t want to whine about not feeling well.
So, why talk about it now?
First, it doesn’t seem to be going anywhere. I thought after months of seeing specialists, I’d have an answer. I thought I’d have some sort of plan on how to get better. The only doctor who has given me a diagnosis {a rare autoimmune disease} let me know that treatment options don’t exist. He told me to keep an eye out for clinical trials. And, the specialist at Johns Hopkins told me to “hope and pray.” That’s not the kind of thing you want to hear from your doctor, and I’m not up for being a guinea pig.
Second, I’ve taken my health into my own hands and I’m coming up with my own treatment plan. I’ve researched all kinds of stuff from what foods to eat to improve my immune system to the benefits of yoga for chronic pain.
Third, I think vulnerability is courageous.
Now, I feel like I have something positive to offer by talking about the progress I’m seeing from the changes I’ve made.
If you suffer from any kind of chronic condition, my story might help you alleviate some of your symptoms and pain. It’s worth a shot, right?
Before I go into the things that have helped me so far, I’d like to share my story with you.
It started three and a half years ago. A week before my wedding, I was hospitalized with a staph infection. The doctors told my soon-to-be husband to “prepare himself.” They told me that I probably wouldn’t be walking down the aisle and that if I wanted to get married, it’d probably have to happen in the hospital room.
I was determined to get better. They pumped antibiotic after antibiotic into me, causing around the clock vomiting. But, it worked. I was released from the hospital three days before my wedding. I got down that aisle with a little help from pain medicine.
After that, I suffered from recurring tonsillitis. Every month, I’d see my doctor with a fever, swollen tonsils, and flu-like symptoms. He suggested removing my tonsils which I did a year and a half ago.
The day after I had my tonsils removed I was eating solid food. It barely hurt. I thought I was going to have a short recovery.
But, my husband came home with a cold which I caught. Because my immune system was compromised from getting my tonsils removed, the cold turned into pneumonia.
I had to take prescription cough medicine for months. And, I had to sleep sitting up which is horribly uncomfortable and I woke up coughing more than five times every night. I stayed congested and taking Sudafed and Mucinex became a daily necessity.
A few months after getting my tonsils out, I was rear-ended. It wasn’t a big deal. There was no damage to the car and I felt fine, but a couple weeks later I started suffering from constant headaches.
X-rays showed that my neck was curved in the wrong direction. I started visiting the chiropractor three times a week and getting craniosacral therapy. That helped my headaches, but I still had lingering flu-like symptoms.
This past December I caught mono, and I’ve been sick ever since. I have good days and bad days.
Some days I feel like I have a cold. Other days, I feel like I have the worst flu of my life. I don’t ever feel completely healthy.
I’ve seen a lot of doctors. They don’t seem to agree on a diagnosis, but they do seem to think that it is an autoimmune disease.
I’m on the waiting list to see a rheumatologist at UVA. In the meantime, I’m learning everything I can on autoimmune diseases and what I can do to help myself feel better.
Only a casual reader this past year, but my esteem for your discipline and passion has risen dramatically. Despite the physical trials you’ve gone through you still continue forward in your goals of helping people and keeping your 2013 goal of a post a day.
Alas, all I can offer you is a smile over the web and applause for you going forward.
Thank you! I appreciate the smile and applause. 🙂
I commented on your guest post, April. I understand how debilitating something like this can be. Especially when doctors do not have any answers for you. I was in agony with tears streaming down my face in pain, barely able to move to the point where it hurt just to wear a t-shirt. Painful and impractical. The doctors had no idea what it was. And refused to treat me because “they didn’t know me well enough”. Are you serious?! So their solution was to shrug their shoulders and say “I don’t know”, refuse any treatment even for the pain and refer me to a specialist. The specialist was a 6 week waiting list and when I tried to book the receptionist barked at me like a drill sergeant. Forget it.
I called a very well known local naturopathic/natural medicine clinic the next day. They were so lovely. Very sympathetic, caring and understanding. I got an appointment the very next day. My consultation was an hour and a half (unlike the 10 minutes at the doctors). I filled in a big questionnaire which she reviewed. We discussed my symptoms. Then she hit the books – looking up things, asking more questions, pulling out more books. Despite having treated many people for various conditions and illnesses, she had never seen anything like what I had. This made her even more determined to figure it out. We began treatment straight away with a herbal mix that tasted like mud mixed with mentholated spirits – eck! Then the following week we started weekly a cupuncture. I noticed a small improvement straight away and over the next 2 months was back to about 75%. A couple of months later I was at 100%.
My suggestion, April – the doctors have had their turn and they’ve shrugged their shoulders at you too and have given up on you. Find a great Natural health clinic (beware of the not so great). My one does over the phone consults for people who can’t get to their clinic and posts the medicine to you. Find a good one. A really good one with a great reputation. Try acupuncture. I know an arty lady who has fibromyalgia who gets a lot of relief from high quality essential oils. It’s worth a try.
Big hugs to you. I am sure you have other readers besides me who have dealt with serious conditions. You are not alone. We are here if you need us. xo
Oh my gosh…they refused to treat you?!?! What?!? Stuff like this makes me sooooooo angry! At least half of the doctors I’ve seen have said that there’s nothing they can do for me, but at least some have tried helping me manage some of the symptoms.
I’m definitely open to anything that isn’t super invasive and/or doesn’t include awful side effects that outweigh the good stuff. One doctor said, “There is one treatment that’s still being tested. It costs $25,000 and requires daily injections that may lead to infection. And, we’re not sure it works on someone like you and it hasn’t been approved by the FDA yet.” Ummm..no thank you.
The local rheumatologist said, “Well, at least you know that what you have isn’t treatable. You can stop traveling all over to see doctors now.” Ummmm…thanks…
I am trying a natural health clinic. We’ve just set up an appointment and even though acupuncture scares me {I have a crazy fear of needles}, I’m going to try it because I’ve heard so many great things about it. It’s worth a shot–and if it hurts or stresses me out, then I just won’t do it again. But, I think actually doing it will alleviate the fears that I have about it.
Thanks for sharing your story and for being so supportive! 🙂
How awful April! I really hope they discover what it is very soon and that you will get better. Good thing that you are sharing it. Hang in there!
Hope you have a nice weekend.
Thanks Aimee! I’m hopeful that I’ll be able to at least diminish the symptoms. 🙂
Ditto on the naturopathic medicine, Speak with a doctor of Osteopathic Medicine.
Sending you well wishes 🙂
Thanks for that recommendation. I had no idea what osteopathic medicine was until I just googled it and found out that we have a clinic really close to home! Thank you!
April you have inspired me even more than usual in sharing this. I look to you so much as an example of the type of woman I want to be and I’ve watched so many of your videos I feel like we’re friends even if the relationship is a little one sided ; ).
Thank you for being vulnerable and opening up. I can’t wait to read what’s really helped you, if not for myself but for someone else.
I’ll be sending lots of warm thoughts your way!
Thanks Kagan! 🙂 I really appreciate it.
You are so courageous for sharing this vulnerable part of your life with all of us- thank you for that! It’s always such an honor to hear someone’s personal story, to recognize that we are all humans with bad days and fears and pain. You are such an inspiration to all of us. Sending you all the well wishes and hoping you find relief soon.
xo
Thanks Ashley! It can be hard to show that vulnerable side but I so appreciate it when others do, you know? 🙂
I’m so sorry to hear about your health problems! I too, would never have guessed that you are going through this. You are such a positive, energetic, inspiring person who I consider a role model for my creative business. I hope you can find more answers to what is causing your chronic illness soon! Sending you big hugs!
Thanks Cathy! Thanks for the hugs. 🙂
Thank you for sharing April. Wow, you really are a rockstar! You do so many wonderful and amazing things in your business. You truly are inspiring and I’m even more thankful for all that you do to help other aspiring creatives. Thank You! I wish you the best in continuing to heal and thrive.
Thanks Sherri! Some days I don’t feel like I do that much so getting that reinforcement is always nice. 🙂
April, first of all I just want to give you a huge hug! I can empathize more than you know and you once again are a mentor to me that you didn’t even realize. Doing everything with your business while you feel terrible is such a lesson for me when I get into the ‘victim’ mentality.
For years now I’ve been in chronic pain myself and it’s been a loooong time since I let strictly Western-medicine based doctors take a crack at things because they just don’t get it. Hang in there! The more natural-based experts I see the closer I get to feeling normal again. It’s taken acupuncturists, cranial-sacral therapists, chiropractors, BodyTalk-ing naturopaths, and finally an amazing doctor who combines naturopathic healing with Western medicine to piece everything together…little by little.
So, I have every faith you WILL feel better. It’s people like you and Mayi and Marie Forleo that help me through my chronic pain b/c part of my pain will never heal until I get out of my current less than healthy ‘career’ environment and into the creative business I am working to develop.
I’ll be thinking of you and if you ever want someone to listen please don’t hesitate to contact me. I know some days you just need someone to listen who knows the exhaustion of chronic pain/sickness. Meantime, *big squeeze*.
Heather 🙂
I know about that victim mentality–been there. Still go there sometimes and have to pull myself out.
I’ve been on the lookout for a doctor who looks at the whole person–not one or two symptoms. I didn’t think it would be that hard to find one, but it is! So many doctors zero in one or two things and that’s it.
I’ve seen good results from getting craniosacral therapy and chiropractic care. In fact, those two things helped me more than anything. I know what you mean completely!
I know, right?! Who knew someone in medicine who looks at the whole person was so gosh darn hard to find!
Funny enough, it took me moving from a hopping medical town/college town that supposedly had all the best and newest docs to my old hometown of conservatives to find the most holistic and liberal doctor that could truly help me…not just help the symptoms.
So…he/she is out there! There’s got to be one in your area. I’ll certainly be thinking and praying for you! In the meantime, I hope you have a pain-free day!! 🙂
We have seen so many doctors that only want to treat one tiny little piece of the puzzle…and I’ll say, “What about all this other stuff?” The response ranges from, “Well, I don’t really know” to “I’ll make you referral for x and y” to “That stuff doesn’t matter as much.” But, we haven’t given up hope.
My husband is funny. We’ll leave one doctor’s office and he’ll turn to me and say, “Well, he’s fired from the team,” which makes me laugh and helps me remember that I have control of deciding which doctors I work with and which ones I don’t.
I can’t believe the timing of this post! I hope you are managing ok today.
I have chronic pain from ongoing issues with a protruding disk in my back. I’ve been meaning to catch up on your posts for days but have been extremely busy and then today, as I was on my way out of the house to an exhibition, my back went, again…. 4th time in 9 months and again, I am paralysed in bed not able to stand or walk.
Thank you for sharing this and for pulling me out of my pity party. Much can be done from my bed and I shall get on doing it!
Oh gosh! Back pain huuuuuuuurts. The first time I ever hurt my lower back was when I tried on wedding dresses for the first time. Within a couple hours, I couldn’t walk or stand up. My soon-to-be husband had to carry me to the bathroom. Now, that happens maybe once a year. Seeing a chiropractor really helped my back pain. In fact, one day I threw my back out called him and booked me to see him in the next thirty minutes. He did his adjustments and I could walk again that afternoon. It felt like a miracle. I don’t know if that would help your protruding disk or not, but I thought I’d share because it kept me from having to take muscle relaxers and pain medicine.
Hi April,
I also saw your guest post, I am in awe of your tenacity and commitment to your business and us.
Leanne xx
Thanks Leanne! 🙂
April, so sorry to hear you are going through this!! I know the frustration of going to doctors and getting no answers. I suffered with chronic fatigue syndrome for two years before seeing a nutritionist who finally REALLY listened to me, did an in-depth analysis of my eating habits and the things going on in my life, and made the correct diagnosis. After changing my diet, adding some major vitamin supplements and a month of another medication, I felt better the first week then I had in years! Hard to believe, but totally true!! The doctors kept telling me I was depressed. I could have been on depression medication for no reason!
I agree with what others have said. You are even more of an inspiration to me now knowing that you are doing all that you do while struggling to feel better each and every day. You are SO positive and upbeat that you would never know you were hurting. Please know that we are all here for you as you are here for us. Any time you need to reach out, we are here to listen!!!
BIG, GIANT {{{{{{{HUGS}}}}}}} for you and kisses from my dogs!!!
Dana 🙂
That’s sooooo frustrating! I keep hearing stories like this–or reading stories like this where the doctors couldn’t figure it out for YEARS. I get it. I’ve been seeing doctors and specialists for the past year and half with not much luck.
Thanks for the support! 🙂
Wow, April. Thank you soooooooooo much for sharing this. I cannot believe how much we have been going through that is similar. I actually just scheduled surgery this morning to have my tonsils removed, and I’m hoping it will help with prolonged illnesses. Now you’ve made me wonder if I have the same autoimmune disease. 🙁
Greatly looking forward to your post on how to reduce inflammation. You are doing a wonderful thing by making yourself vulnerable an by sharing. So grateful.
Well, don’t get discouraged yet! My ear, nose, and throat doctor who removed my tonsils was great and he told me that 80% of people who get their tonsils removed due to chronic tonsillitis and similar symptoms will be “cured” after the surgery. And, I actually felt a lot better after I got through the pneumonia. Everything came crashing down when I got mono this past December, because it wrecked my immune system. Things may have been very different if I didn’t get mono, so avoid it at all costs. 🙂
Wow… I feel bad that I missed this when you posted it and I’m just now catching up on my favorite blogs. Thank you so much for writing about your story and being honest. Your illness sounds awful, and I truly had no idea that you’ve been sick.
I know you’ve mentioned before about how we need to make time for what’s important when it comes to our businesses and that sometimes we need to put on our big girl panties and just do the work.
I have so much more respect for you now that I know you’ve been doing all your videos, blog posts, product launches, and marketing while coping with your illness. And it makes me feel pretty lame when I miss a few days of posting or get behind in my work. Really, I don’t have any excuses so I should pull myself together and get to work!
Being vulnerable on my blog is something I’m working on. I’m planning to talk more in-depth about my suicide attempt and how I left my abusive family. It’s true that we all have our issues but that doesn’t make us less qualified to help others. It makes us better role models.
I’m sending you hugs through the internet! **HUGS!** I hope you find answers about your illness soon.
Thanks Sage! Please don’t feel bad at all. You can’t read minds, right? Or, is that a special skill that I didn’t know you had. 😉
Believe me. There are definitely days when I get behind on work. And, I have had to juggle my schedule to make my health my number one priority this year. I had to say no to speaking at two conferences I really wanted to yes to. I haven’t been able to make it all work.
We all have “stuff” in our lives that gets in the way of our businesses sometimes. And, I don’t know anyone who hasn’t been bit by the procrastination bug. I think you’re doing a great job!
When I read your blog, I already feel like a close friend. You’re extremely open, and I admire you for it! It’s not easy to hit that publish button when you’re feeling vulnerable. For this post, I debated whether or not to publish for at least half a day before I finally built the courage to hit publish. 🙂
I watched a very good friend suffer from chrones disease for years in high school before it was finally diagnosed. People thought she was making up the pain because for so long the doctors could not figure out what wrong. To this day it still has a huge effect on her life.
April, I commend you for your strength, both in dealing with this and sharing it with your readers. I would have never imagined you were going through this–you ooze strength and confidence in your blog and business. I understand why you have been hesitant to share this, but if anything it has made me respect you and your work that much more!
I do hope you are able to find out soon what is the source of this and can find a treatment that helps you get through it!
Oh my gosh–that’s awful! Thankfully, none of my doctors have thought I was making anything up. Some of my symptoms are obvious and can’t be made up.
Thank you! That’s so sweet, and I really appreciate it.
Me, too. 🙂
Wow, April so sorry to hear about all you are dealing with. I just read your followup to this post about kicking diet soda out, so congratulations and that’s great that you are feeling better!
I am thinking you have probably found this in your research, but after all those antibiotics, your body is in great great need of probiotics. So much of our health is actually impacted by gut health, and especially when our body has essentially been wiped out of any bacteria – including the good with the bad – there has to be some intense recovery by way of probiotics after such a long journey of antibiotic use.
I was in a similar situation as you a few years ago, having my tonsils removed, repeated infections and sickness. I was on antibiotics for that and for my acne, and finally I just ended up feeling similar to you and seeking my own path. It was frustrating for me to have antibiotics for something (my acne) that I knew was a systemic problem, so I wanted to address the root, not just the symptom. I cleansed my diet and got into fermented foods (amazing for your health, filled with living probiotics to get you back to yourself and probably more full of life than ever!) and at least raw, living probiotic supplements (there are good ones and there are not so good ones depending on what you choose) . . . and I improved immensely and so quickly!
Fermented foods are a bit of an acquired taste for many. Have you ever tried kombucha/making your own? That’s acquired too (I used to not like it but now love it!) Anyhow, good luck and I hope you are able to kick this once & for all!
blessings,
Rachel
YES! I actually haven’t taken any antibiotics in awhile because they weren’t helping and I didn’t want to keep taking them. But, I am taking a really good probiotic supplement each day and I think it has helped me.
Oh man…I tried kombucha this past weekend after reading your comment and let’s just say that it’s definitely an acquired taste! 🙂 I haven’t tried making it on my own, but I might.
Omg! I can totally relate to this. I have an auto immune disorder too. I didn’t tell anyone until last year. I was afraid to be seen as a complainer. I have flare ups that last for months. I have tried everything, and like you, have been working on my pH. I drink Kangen alkaline water, have you tried it? It has helped. We got a machine that hooks up to our sink. I’ve cut out sugar as much as possible. I do an anti inflammatory diet. (Removed nightshade veggies too). I’m so sorry to hear about anyone feeling like we do! Hugs!
My husband and I recently ordered a walter filtration system that makes the water alkaline. Until researching, I thought all water was alkaline…who knew even most bottled water isn’t? It’s crazy!
I hope you’re feeling well and don’t have another flare up for a LONG time! It’s the worst when it comes out of nowhere and knocks you out when you’ve got a lot planned.
This was amazing to read. I’ve been fascinated by chronic illness since reading a story by a woman who has Lupus. It’s about something called The Spoon Theory. Good read, if you haven’t read it yet. ( http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/ )
Years later, I joined the military and was having problems….joint pain, muscle pain, fatigue, migraines, a heart rate that accelerates at the slightest provocation, with a blood pressure that plummets simultaneously.
As you can imagine, that doesn’t go over well in the military, so I got all sorts of flack. I was told I was just trying to get out of PT (never mind that I was a fitness instructor, and PT was my life!). I was told I needed to suck it up. I was even told by a doctor that “well we don’t know what’s causing your symptoms, so there must not be anything wrong”. Huh?
I got out of the military, and I hoped it would just go away on it’s own. But it still hasn’t. I have good days. I have off days. I briefly had a doctor taking it seriously, and he was trying to test for various auto immune disorders. But then we had to move.
Currently I’m researching gluten-free living. I’ve had several friends suggest that eating that way might reduce some of my symptoms. I haven’t been tested for gluten intolerance, but I have a mango allergy, and dairy intolerance, so it wouldn’t be surprising if there were other things I needed to cut out or reduce.
Kudos to you for being so open! I hope this helps others to know they’re not alone. And I truly hope you find something that works for you.