Aestate Hora - Summer Time

I am definitely not the most consistent blogger which I guess is part of the reason I don't have too many followers but c'est la vie. Since I last communicated here I have had two neurological events, been through rehabilitation in two facilities, physical, occupational and speech therapy. I also recently moved to what I hope will be my final home here on earth and come to the realization that I do not know how to put on my own oxygen mask first. With the help of a new psychologist I am truly going to try to figure it out. My body continues to fall apart at what in my opinion appears to be an accelerated rate. My latest bone scan shows that in less than two years my bones have deteriorated to those of an 80 year old woman rather than one who is approaching her fiftieth birthday. I do have much better control of my diabetes thanks to my persistence and some pretty cool new meds. My liver disease is probably the only condition that proceeds like a slow yet still deadly progression. Sometimes I laugh because in the beginning of learning about my liver disease the doctors were sure it would get the best of me within two to five years and since then I have suffered a number of things which could have just as easily ended my time here on earth. As the years pass by I sometimes can't help but feel like the cruel nature of chronic illness is that the patient feels like all that's happening is that he or she is being monitored to death. To those on the outside this may seem like a form of self pity or even a bit of situational depression and there is some kernel of truth; however until you can walk a mile in their shoes do not be quick to judge. I was reading in one of my health magazines I get from the doctors office and one of the editors Corinna Corejo, a patient advocate shared some great insight on the concept of reaching out to feel better. Life in general is so much easier when we don't try to go it alone but especially when one is dealing with any form of chronic illness. Chronic illness is overwhelming, unpredictable in that what works one day usually doesn't work the next day or new medicines become available, along with their possible side effects (lol) and health goals move or become obsolete and we need to find our new normal yet again. Corinna mentioned that sometimes it feels like the only constant is that nothing stays constant and I literally laughed outload while reading it. All of the above can lead to anxiety, depression and even self pity which make it even more difficult to maintain an appropriate self care routine. So we find ourselves skipping doses of meds, putting off labs and tests which we really need and these are red flags which we and our loved ones and caregivers need to pay attention to.  One of the biggest revelations we all need is that in no way are we supposed to be doing this alone and yet too many of us try to do exactly that, including me.

So this is my way of helping us all out. I want to share some practices which were suggested by Corinna and some which I have personally found useful.

Remember that at their core our health professionals (doctors, nurses, lab techs etc...) want to care for us and they are a good starting point for building our support system. They are a fountain of knowledge. Meet with a dietician, ask your pharmacist questions and confide in your nurses who are often the most approachable and our first line of defense in this ongoing health battle.

Your friends and family can and will be a huge part of your care team especially if you hope to succeed in this ongoing struggle which may be with you until you leave this earth. Maybe simply changing up the family dinner routine allows for rest or exercise but without communication and flexibility on everyone's part, nothing gets changed and we fall further down a dangerous path. It's important to share what they shouldn't do. For example let them no it's not helpful to hear "you can't eat that." We know but they might not in their eagerness to help know that it's honestly the least helpful thing they could say. We need to help our loved ones out by setting healthy boundaries because no one thrives when they feel like they are constantly being watched or hovered over.

And Corinna reminded me that some of the most valuable resources for support often comes from our peers who are also suffering from chronic illness similar to your own. One thing I have found is that their are universal commonalities which almost every chronically ill person deals with...fatigue, loneliness, discomfort, pain, you get the idea. Whether we have diabetes, cancer, MS, Lupus, fibromyalgia, we often suffer the same way and thus can be empathetic in ways no outsider can. We can also offer real world experience over traditional medical knowledge. Kind of like the difference between book smarts and street smarts. Our partners in illness also help us feel less isolated and this is one of the most encouraging byproducts.

Yes we all need to find our own way because we are uniquely and wonderfully made but a good support team will make this chronic illness stuff manageable. This reminds me of one of my favorite scriptures which I am sure I have quoted before but it's so helpful that I feel the need to close out with it today. Ecclesiastes 4:9-12 Two are better than one, because they have a good return for their labor; if either of them falls down, one can help the other up. But pity anyone who falls and has no one to help them up. Also if two lie down together, they will keep warm. But how can one keep warm alone? Though one may be overpowered, two can defend themselves. A cord of three strands is not quickly broken. Amen my friends...hope to see ya on the flipside ;)