My stellar health and other complications

After 12 years and more medical visits than I care to count, I don't have a new normal. I don't know if I will ever have a new normal. (I think that is just a pile of crap - saying that you get to a new normal and 'tada' its over, you are done. A nurse said to me when I was diagnosed with breast cancer that it would be a year of my life to get through treatment and then I could move on.) Sorry, it didn't work that way.

12 years out from a breast cancer diagnosis I now have rheumatoid arthritis, fibromyalgia, a bad back (degenerating disks, dessicated disks, and a bone spur in my neck), two bad knees, cancer twice before 50, had my gall bladder out for gallstones, and a hysterectomy before breast cancer because of fibroids, and more.

I can't do much for fun these days because I end up paying the price  - whether its 30 minutes of gardening followed by a two hour nap or a trip to the gym followed by off my feet for the rest of the day. A day at the beach is usually followed by a day in bed. I over plan my life to allow for rests and naps.

I used to be fairly shy about talking about bodily functions but with all this medical crap going on I think I can ramble on about a lot of different things simultaneously - there is not much that is too icky to discuss at this point.

Because of my medical history (do I hate that term or what?) I am not eligible for things like life insurance, clinical trials, newer biologic treatments, surgeries which might help me in the shorter term, etc.

So where does this leave me? I think I have the equivalent knowledge of a medical degree in some areas because I live with all of it. I prioritize my health first at all times. I can be very whiney when forced to do more than I am able. When I say 'no' I really mean 'no'. I only selectively listen to my doctors because they all contradict one another or tell me to ask a different specialist about something they can't answer.

And most importantly my emotional health is just as important as my physical health - that really took me a long time.

With my stellar health under my arm, I go from one medical misadventure to the next and drag along all my baggage. But I'm still here, between naps.

Its been a while

I haven't blogged in a while because I ... I actually have no idea why. I have been going through the motions of life. I have had some highs - my health has not had any significant new 'bad' things nor have my current 'bad' things decided to act up much. Yet. (There is always that possibility.)

I have also had some lows - a college friend died of leukemia (that was horribly sad) and I have another friend currently dying of breast and stomach cancer.  So emotionally I have been a wreck but I think I have been hiding that part. But I am getting it under control. A big step is getting to my meds therapist next week to talk about options. Did you know that the more chronic medical issues you have you may need more emotional care? (I am not a professional but it is my personal opinion that your emotional you is just as important as your physical you.)

It is also a busy time of year for me. I have no income but I do knit and weave and sell stuff at craft shows from late October to mid December in an effort to buy more yarn. And to get out of the house and see the world.

But it is a struggle. I am working my way through it as usual.

Coping

Sometimes people say to me 'I don't know how you do it' meaning 'how do I live with dilapidated body'. (I prefer dilapidated to defective, damaged, or other terms.) Well, sometimes I don't know  how I do it either. But I do k now somethings.

Life with chronic illness is not something done alone.

• I have a team of doctors. All my doctors are at the same hospital so they can talk to me and about me. I appreciate it when they do ask questions of each other about my conditions because my medical history is complicated and involves several specialists.
• I have a 'team' of friends who try to understand my ailments as much as I try to understand theirs. If you don't have ailments, you don't get my life. (I do have friends who are healthy but they do not always understand.) These are the people you call when the doctor says 'but we need more tests to see what is going on here' or 'here's another sucky diagnosis'. Together we can figure out how significant the new issue is. There's nothing like having a friend on the other end of the phone who is googling away to help interpret the latest news.
• I have a 'team' of online resources. These range from specific websites to secret groups on Facebook where we can share our ailments without being found by family members before we are ready to share or just to b*tch about the latest news. One website for chronic illnesses I have found which is awesome for me is The Mighty. This is my current favorite. There are others for when my mood changes.

My point is I could not cope with this alone. I need emotional support to deal with this. I also know my emotional side is just as important as my physical side. Physical issues result in emotional issues such as anxiety, depression, stress, and more. I know I have to treat both so as not to implode. 

Yes there are days when I wake up and wonder how will I cope today. But I have learned to reach out. I have learned to say no. I have learned to be proactive in my care to speak up or take a day or afternoon for myself - the proverbial 'mental health' day to give myself a break. 

This is how I cope. 

Finding Support While Staying Home

The internet can be a very bad place to go when looking for emotional uplifts. Its full of trolls, 'fake' news, politicians, natural and human made disasters, and all sorts of other wonderful stuff that I prefer not to know about.

If you post on social media about feeling like crap you get all sorts of 'positive' replies: "I'll pray for you" (thanks but not my thing), or "you need to switch to a raw vegan diet and drink a cup of apple cider vinegar three times a day" (thanks but I eat pretty healthy and am capable of selecting my own diet), or there is a 'natural doctor in Timbuktu who cured me of my ailment and I am sure he will cure you too if you send me $1,000,000 to connect  you with him" (um, no way.). It may make you feel better but I have found I need to be a bit more selective about what I post and where.

Support groups can be wonderful things. But with a chronic illness and you are having a bad day, you aren't going to make it to a meeting. That would mean getting out of bed, putting on clothes, and getting in the car which often is a bit much.

So online it is to find support. One site I have found to be very helpful with chronic illnesses is The Mighty. It covers all sorts of fun ailments like chronic illness, cancer, disability, rare disease and another 600+ ailments and allows you submit stories, read other people's stories and its full of normal people who feel the humor and sadness of coping with ailments all the time. If you are in the chronic illness category, I highly recommend it.

If you are looking for cancer support, I suggest you go over to my breast cancer blog and look over there. But whatever you have do not skip your emotional needs. They are just as important as your physical ones.