We have health challenges with three of the five. Our oldest is a type 1 diabetic (but if you have ever read this blog you already know that), one of our twins has sometimes severe asthma and also Raynauds syndrome (which her pediatrician is currently working with the rheumatologist to find out if it is in fact benign or not as we previously thought), and our son has asthma and a sever peanut allergy. That's also a lot.
There are months that go by when we have almost no problems and things are easy. And then there are the last 12 months.
My daughter with asthma and Raynauds has added to her list and now is suffering from complex migraines that mimic stroke symptoms (exactly the same kind I have had since I was 16 years old). Our other twin has developed some sort of issue that seems to be the exact opposite of Raynauds, her hands and feet heat up, get flushed, and hurt at random times. The pediatrician is still working on this one although her blood tests all cam back okay. We have begun to joke that if the twins were able to clasp hands while they were each suffering from a flare up (Raynauds turns your hands and feet blue to white and your fingers and toes get very cold) that they could cause the end of the world....a physical yin and yang so to speak (we could make dinner time at our house into a reality show with the stuff that goes on).
Our oldest continues to battle with sever low blood sugars. Her A1C dropped almost an entire point in just three weeks. Which sent her body into a withdrawal of sorts. She has felt horrible and is also become afraid of her low blood sugars.
It is Spring, which means in our house that allergies are a flowing! So the months we went without any breathing issues and got lucky with very minimal illnesses over the winter are gone. Everything is blooming and our son is, well he is puffy, snotty, and itchy.
Okay, so that's a lot too, right?
Its like an infomercial or game show... BUT wait, there's more! And this time it's me. I have spent the last year ignoring and blaming symptoms that have increased on anything and everything I could. That's my way. I believe it's genetic. I take care of everyone else and put me on the back burner. I could type two pages of just tests, appointments, and such but let's just save time and shorten that up. I have some kind of inflammatory arthritis caused by my auto immune system. I found a wonderful doctor (which has never happened for me before) and she has calmed my nerves about labeling exactly what I have. It may take years she says to figure it out exactly. The two she has narrowed it down to are Lupus (which my grandmother, whom I love very much has) and Rheumatoid arthritis (which my great grandmother had) OR she says it may be both. let's be honest, that's more than a lot.
Okay, so I have begun medication to treat my symptoms. I needed to have an endoscope test because I have been nauseous for almost a year and she needed to know what limits on medications I may have. Well, I have Celiacs disease as well. Which explains a lot for the last year of stomach issues and weight loss. But I could have done without that diagnosis all together.
I have entered the angry phase for the Celiacs because of the cost of gluten free foods and the fact I can never again have a cheese danish. Sounds silly I know. I have a shelf in the pantry of stuff the kids are not to eat. I have talked to a few people about brands and types of foods like bread and noodles that are good. But I am still a bit in shock of it all. No more restaurants, no more random snacking, and no more carefree eating. Am I wrong to be angry? To be honest, I really don't care. I am just angry.
I should be thankful that everything I have is treatable and not life threatening such as cancer would be. I am not in that thankful space. Maybe I will get there. Maybe I will deal with it all more maturely in the future. Maybe not.
It took me some time to decide if I was going to share with the world (blogosphere so to speak) all of this. But then I realized, the amount of community and support we have gained from sharing our daughters diabetes has been life changing and we would not be where we are emotionally or physically without the sharing we have done. So I am sharing. I will eventually write about my Lupus or RA since everyone is so different and my story may help someone else. But let's start with this small (ha ha, yeah small. I know that's funny right?) amount of information.
I must say that the amount of support I have gotten from my immediate family and friends has been incredible. I am not alone in all of this. I know that. They have been great. I will continue to bake for my family and friends. I will continue to do all the stuff I love to do for them. I just won't be tasting or eating any of it myself.
I am hopeful to get some response from others dealing with similar issues. I am hopeful that someone out there will read this post and know exactly how I feel and will respond. I am hoping for a similar amount of support like we have gotten over the years for my daughter's diabetes.
Be angry...let it out! Scream it ..yell it...beat your pillow until it is just hypoallergenic dust.
ReplyDeleteI'm angry too! You don't deserve this much medical mayhem.
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I'm sorry to hear about your Celiac diagnosis. I have done a lot of research on CD and can understand your frustration. Wheat and gluten are in so many processed foods - not to mention in restaurants. There isn't much I agree with her on, but Elizabeth Hasselbeck wrote a great book called The G-Free Diet (http://www.gfreediet.com/). Cutting out grains will be hard, but you can do it. There are a number of really good wheat/gluten-free flours that you can use to make bread with. They can be tricky to work with at first (since there isn't any gluten), but once you get the hang of it you'll be fine.
ReplyDeleteIf you get a firm RA diagnosis, I would recommend looking into dietary changes to help with inflammation. Even foods that create an acidic environment can cause pain. Every time I overindulge, my plantar fascitis comes back with a vengeance. Keep me posted! <3 Renee