Living With The Unknown

Posted by Lisa Stevens on

**This blog was written awhile back, stay tuned next week, with a more recent update on this journey.***

I took one of my kids to a dietitian the other day, it was a great appointment, when we left my child said "Wow, she said a lot of things that you always say!" Ding ding ding, maybe this mother knows a thing or two. hahaha

One of the things she said that really resinated with me, and I try to tell myself and my that the size you are (or the weight) does not determine how healthy you are. There are people who are exactly what the BMI charts and other charts deem as correct weight/size...but in reality they are not healthy. They could be in pain all the time, or are tired no matter what they do...this is not healthy. 

I have people who see me, if they have not seen me in awhile, and say I look great. And maybe I do...but I can 100% say I do not feel healthy. So, I know that healthy is not always size dependent. And for anyone who is interested in these kinds of things....right now, at this moment (my weight does fluctuate by about 10 lbs...) I am considered overweight by the BMI standards. I have never liked using those as a judge for my health, but I know a lot of doctors do (still, even when everyone realizes that each person's body is different and it is hard to pinpoint exactly what weight someone should be) and so I will use it as an example of what not to do. hahaha But if I saw someone/knew someone's weight and they were my size, I would not say they are overweight...and I know for a fact that most people do not look at me and think of me as overweight. 

I am no expert, I am just a 43 year old (maybe 44 depending on when this blog actually gets, woman, mother of 5, who has read a lot of different dieting books/healthy living books, blogs and other self help material about being and living healthy. I have dealt with negative body image my whole life, still to this day it haunts "wishes" for my body vs what my body actually is...but this blog post is not about the be healthy I do not need to be a certain size, or be a certain weight. (And I am not talking mentally healthy here...just physically....although it is hard to distinguish the two...for the sake of this blog I will try to do that.) 

So, back to the healthy vs not if you saw me and thought I looked good, while I am glad...but honestly I would much rather be healthy/feel good than look good. (And this is a huge step for me personally, since I spent all of my life thinking if I could look good, I would feel good too...) But if I am not healthy, I am not "good". I am in pain 80% of the time (and I have a very high threshold of pain…or so I have been told. Hahaha) I have issues that arise every couple days...that make living hard, not impossible, but more difficult than someone who does not have to think about these issues. I am not saying I have it bad, or worse than a ton of other people....but walking around with an undiagnosed illness can be tough, physically and mentally. 

And it is not that I do not want to get it diagnosed...I eventually do...I have gone for some testing and have a referral into a specialist, but I will explain here why I am not in a huge rush. (I won't talk about Ben's undiagnosed illness here, he shares about his...this is just about mine). 

Right now, as much as living with these issues suck...I can do that, live with them. They may disrupt my life to the point of inconvenience but that is about it. (And I do believe this is solely because of the type of life we have created...if I had a career outside the home my story would be very different...). Whenever I need to take a break, I can do that. I am not bound by any one else's timetable...which affords me the luxury of taking a moment or two when I need it. 

Why would I not rush and advocate for myself with my doctor? Well, for starters I have...over the last few years I have made countless phone calls/doctors appointments giving her my symptoms and talking through options/possibilities. To be honest, they are not always met with the urgency I feel they may warrant. One thing I do not like at being made to feel like I am overreacting about something, and sometimes that is how I feel. Now this is not a bash the health care system post...I am thankful for the healthcare we have. That does not mean it cannot be frustrating when dealing with issues. 

Second reason, I kinda feel there are just a few possible options on what is wrong with me. None of which are life threatening (although my pessimistic husband would add a life threatening one or two to the list of possibilities...hahaha), so in a way there is no huge rush (only because I have adapted my lifestyle/myself to being accustomed to the pain/issues).  But, for me, the worst case scenario would be that they cannot find anything wrong. Now, does that mean there is nothing wrong? Nope...but that would validate any inkling of thoughts about myself overreacting/being dramatic about what I am going through, how I am feeling. And while that is not necessarily a physical health, it is definitely a mental health issue. 

Another option that could come back is that I have IBS. Which is what the doctor has told me to research/look I think this is what she believes I have. I know there are tons of people with IBS....and while it is not the worst thing out there, it is not great either, since it can be unpredictable and can/will affect my life going forward. I am not positive this is the issue, but I am not convinced it is not either. 

This option seems the most likely....yet will feel the hardest to diagnose. This summer our 26 year old daughter was diagnosed with Celiac Disease. She was having issues, the doctor ran some tests and while she (the doctor) really didn't think it was that, the blood work came back positive. She then had the scope and it was confirmed. Now she is off gluten for the rest of her life. She is still working trying to figure out how to live in a gluten filled world...but be gluten free, without any cross contamination. She lives in her own home with her boyfriend, they are making it work. He is mostly gluten free, but has one small section just outside the kitchen that he is allowed to make toast. hahaha But she even has to go to the extreme that she has to feed her dog and cats gluten free food, or else just feeding them will/can make her sick. So, all that being said....celiac is a hereditary it came from somewhere. Ben had the testing and was negative (that does not mean he cannot develop it at another point in his life...but as of right now he does not have it), I had the blood work but I had been off gluten for months before the test, so the test just does not work if you are off gluten. That is my main concern with getting tested again, you have to be on gluten for 6-8 WEEKS before the test for it to be accurate. Now, while I always feel a little crappy (remember mostly just inconvenienced) if I look back on the times I feel really bad (or spent hours/days as close to a washroom as possible) was times I had gluten and/or was in direct contact with it. That scares me...that I may have celiac and have passed it onto my daughter. It doesn't scare me that I will never be able to have gluten again...but that it is such a lifestyle change, for everyone in my house not just myself (and there are 6 other people living here). While they will still all be able to eat gluten (hopefully, they all gotta get tested too...but so far one has had the test and it was negative) everyone will have to be very careful when preparing it in the same kitchen I will be using. But if having such a little amount of gluten (here is an example, Ben made a sauce that contained soy sauce....which was not gluten free, I spent 4-5 hours that night in the I cannot even tell you how much of the sauce I would have actually ingested...not much) I cannot imagine trying to eat gluten for 6-8 weeks before my blood test....then I have to keep eating it if the blood work comes back positive until I get a scope. When do I want to feel that bad for months on end? Cause while I do feel crappy..that is a whole different kind of crappy. hahaha

The last option that I have found in my Dr. Google search...hahaha Is Fibromyalgia. It can cause a lot of the symptoms that I am having. This is a recent discovery for me. I only thought about it because there are times when my whole body hurts...not just like a bone tired/hurt...but the clothes touching my skin, even my loved ones touching me. There are issues that tend to go along with fibromyalgia, including intestine issues, headaches, fatigue, memory problems, mood problems...ect. I have a lot of these, the biggest challenge when trying to diagnose yourself (hahaha) is that so many diseases/disorders have a lot of the same symptoms. So, that list can actually be attributed to Celiac as well. 

In the end, what is wrong with me? I just don't know. Am I overreacting? Does everyone just feel this crappy most of the time? Am I old? Is this just old age and it is only going to get worse? I sure hope not. Living with the unknown can sometimes feel like too much.  

Share this post

← Older Post Newer Post →

  • Sounds like fibro. I have lupus, so i kinda know what you are feeling. Everytime some new symptoms.

    Mona-Lisa Beers on

Leave a comment

Please note, comments must be approved before they are published.