After nursing a two-week cold (and continuing with the residual symptoms) meanwhile resorting to the “Bargaining“ stage of Kübler-Ross’ model of grief, I’ve been reviewing some old books, websites, articles and various other odds and ends that I have accumulated over the last decade or so. Granted a cold is nothing really and I don’t mean to minimize the value in understanding the grieving process, but I have found myself chastising and beating myself up emotionally for letting myself get to this decrepit state.
So, my usual M.O. (modus operandi) towards dealing with my health, is to seek out EVEN MORE information. In between blogs and websites, it became clear to me that there is so much information out there and I actually became numb. I tend to stick with the mainstream sites (Medscape, WebMD, LFA, SLE Foundation, Lupus Alliance, the Kidney, Pain, Skin Cancer and Arthritis Foundations, etc.) simply because I am very research/medical oriented. There are also a number of blogs and sites that offer health and coping information from various sources that are not only valuable information, but can be fun and more engaging personally. However, just as the info overload took its toll on me – a veteran by my standards – so, too, did the awareness that no one really knows THE ANSWER, its all very subjective until someone starts singing and even us veterans are still struggling daily no matter how much we spout off. So, thinking back to where I started in this info accumulation process, I did a quick Q & A with myself to figure out one of the most important lessons I had hoped to learn starting out:
What is it that I needed first right when I was diagnosed? Heck, I was still trying to figure out what was happening – not what I needed.
I understand now that I needed to experience this whole process through symbiosis – defined by Merriam-Webster as:
“ 1: the living together in more or less intimate association or close union of two dissimilar organisms “ (Source: Merriam-Webster.com)
Just as it is in symbiotic relationships, you will need to cooperate in living with yourself and your body. You and your immune system are living together in union with a ‘”dissimilar” understanding about what ‘defenses’ are necessary for your survival. When heading to the doctor’s office for lab work results (that will hopefully determine what the heck is going on with your health), there are a few tips that I’ve pulled from the materials, sites, blogs, articles, conversations, books, websites, personal experience, etc:
Go in knowing you’re not going to know much more walking out of the office than walking in…
There might be some answers towards treating symptoms, but there is no absolute cure…
There might be some explanations as to why you feel the way you do, but no script will be offered to help you explain it to others…
You might be given an opinion on what steps you need to take, but that person talking to you can only give their best medical conclusion based on how your condition presents itself…
You might receive a diagnosis – you might not…
Whether you like it or not, your course has been set and the only thing you can do is just keep that ship afloat the best you can and with you at the helm.
Your situation will be based a great deal on the person you are. However, that doesn’t mean beating yourself up for getting sick- or – having those days where you just aren’t able to function the way you expect yourself to. My first recommendation for those who are still seeking a diagnosis, who are trying to hold onto their diagnosis, who are experiencing a potential addition to their diagnosis, or anyone who is having to face health-related changes in their life:
Above all else- believe in yourself, check your compass often and ask yourself what your heart desires.
Even though it might be information that you initially seek from your practitioner, realize that this will be an experiential process. Information changes – what works for one person doesn’t work for another. Medication and physical chemistry DO matter. Living with illness requires practice. There are new web sources everyday and I personally am still discovering a few that have been around awhile. Today, I want to offer you an older coordinate that helped me chart my maiden journey that I think might be one for you to consider as well.
One of the best things I did when I was first diagnosed was to read a Patient Publication Article through the Warren Grant Magnuson Clinical Center (NIH) entitled “Coping With Chronic Illness”. Of course, today there are a lot more articles to choose from out there and all you need to do is type into your search engine (also check out the newest: Alltop) to find more specific sites. Perhaps because it was not specifically LUPUS-related, the information felt like it covered all the bases quickly and to the point. It just acted like a buffer until I was ready to face the specific illness head-on.
You will come across a lot of stuff to absorb – some of it will fit and some won’t – just keep searching and keep that horizon in sight – focusing on actively charting your course… one port at a time.
Wishing you calm seas on your journey~
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As you might suspect, we encourage you to visit your local library first to find your book, visit your fav blog and purchase through them to help cover their web maintenance or support them in their writing (e.g. Rosalind Joffe, Lisa Copen, Laurie Edwards, Sara Gorman).
If you do purchase, we encourage you to buy local like Powell’s (search box on the blog) or other independents like In Other Words. There are times that things will either not be available or aren’t available immediately and that’s where Amazon.com comes in (Shelfari Bookshelf on our blog links to Amazon).
