I Started a New Blog

I started this blog when I was diagnosed with breast cancer in 2007. Blogging really helped me cope with my cancer and its treatment.

However my life has moved on. I have blogged about it in the past - that my life was changing - breast cancer is no longer the main focus in my life.

My chronic ailments have replaced that focus. While breast cancer never really goes away it turns more to be chronic illness than a terminal one, unless metastases appear. So I have a total of four chronic illnesses - breast cancer, thyroid cancer, rheumatoid arthritis, and fibromyalgia. I also have chronic physical ailments - bone spur, desiccated disks, and degenerated disks.

I may continue to post here periodically but not as often. My primary new blog is "Life With Chronic Illnesses".

Blogging In The New Year

I have many plans for 2018.

For my health, I hope to have a healthier 2018 than 2017 was. Honestly I do not think I can deal with any more ailments. I hope I can be healthier.

For my blog, I hope to go back to blogging regularly. I started blogging about breast cancer and have continued to blog through the roller coaster of the rest of my health. This all started in 2007, more than ten years ago. While I have been blogging almost every day, in the last few years I might have slowed down a little and skipped a day here and there.

Then last summer, I made the decision, due to travel and other plans, to take my blog off line for a few weeks. While the internet can be a wonderful thing, it can also be stressful and depressing. Many mental health professionals tell people to stay off the internet. So as I would be traveling and would not have access to the internet, I decided just to take a break.

Unfortunately I have not gotten back into regular blogging since. Blogging provides me emotional support. It provides me a way to cope with my feelings and emotions as I deal with my health and other issues. I need to get back to regular blogging to help myself deal with life.

For my stressors, I hope to get back on top of them. I have a couple of significant issues going on in my life that I am not ready to deal with - mostly because they are not resolved. Both are beyond my control. And one of them is not my story to tell so I am not going to blog about it until it is resolved. In the meantime both cause me stress. And I need to work on my coping and get on top of them.

Life with cancer and other medical issues is not easy. I am unique in that my pile of issues is not common. I can find support in many areas but unfortunately not in a single one. This requires me to spread myself thin in coping.

But my goal in 2018 is to blog regularly throughout the year and thus cope better. Here's to a Happy New Year and more blogging!

Not My Story To Tell

One important issue when you have cancer or anything else 'yucky' is that well meaning friends and relatives often take it upon themselves to retell your story, with embellishments, to others. Its not their story to tell.

As the patient, you have the right to decide who to tell, what to tell, and when to tell about your ailment. This is one of the big reasons I have a blog. I get to funnel the information and tell what I want after I have a chance to digest it, when I want to tell it.

You might have noticed I do not write about other's health challenges. I might mention someone but I don't tell their story. Its not my story to tell. Its theirs.

This is an important point to remember. You are not entitled to retell all the details of someone else's medical misadventure. Its okay to tell people that someone is coping with their ailment. If the patient has consented, you can tell others how they are doing. But you don't get to tell the blow by blow story of it. And even if they have consented, you are not their PR agent spilling all.

Patient, Yuckyailment, is the one who gets to decide who gets told what amount of information. Being sick is a private matter. So get your nose out of it.

More Not Blogging

I have been very busy the last few day weeks. Now that I can drive, I have been driving and going places and thus wearing myself out and making my knee hurt. I had Thanksgiving prep for food and house guests and dinner for 14. I also have had some doctor appointments that were postponed from when I couldn't drive. I still have lots more appointments for the same reason as well as PT for my knee.

So now that I am getting back to normal I have things on my mind for blogging topics. They will not get all the coverage due  because I have been a slacker for my reasons above.

• I have pondered the issue of losing friends and making new friends. In the past year, I have lost two friends. Mostly because of my actions because I could no longer with their actions at attitudes. When you part ways with long time friends I think the holidays make you notice their absence more. I think I am still comfortable with their absence in my life. The stress they caused me no longer bothers me. I can't miss friends when I would get so aggravated in trying to get together and getting together. I'm glad I'm done but I still feel some regrets - some because I waited so long to take actions.
• This 'gentleman', and I use the term loosely, really pissed me off.
  
  If you have MS, or PTSD after serving in the military, or even breast cancer, this a$$hole thinks we are 'undesirable'. Why? Because he is against having a marijuana dispensary in his neighborhood, which is one of the nicest in Boston.
• My health is may be telling me new things that I am not ready to discuss. Which aggravates me more. Only four appointments this week, plus two PT trips. I'll discuss later, maybe. But I am really aggravated. I am not allowed to have more ailments than I already do.

That's all for now. But you get the idea. I survived Thanksgiving and it actually went very well. Iam now looking at Christmas and hope it doesn't stress me as much again.

Celebrate the Holiday, Without the Cancer Advice

Over on Cure Magazine, Martha Carlson, who is living with metastatic breast cancer, provides a bit of advice on how to enjoy the holiday, even when confronted by the unwanted offers of 'advice' from the 'helpful' friends and family you see at family gatherings. 

Everyone knows this type of people. They think they know more than you do about how to treat your disease, because:

• They read something about it once
• They saw something about it on TV or online
• They are smarter than you and just know these things that your poor brain cells could never have found on your own
• They know someone who had a similar ailment a long time ago and their treatment must be better.
• They are positive alternative medicine will cure you instantly and you should not waste your time on traditional medicine.

After living with metastatic breast cancer for three years, she has this advice:

"Listen first.  I try to remind myself that she believes what she’s saying, thinks it’s something I’ve never heard before, wants to save my life, and, most importantly, doesn’t know any better. I listen first, at least to a few sentences.

Don’t apologize. I do my best to not say “I’m sorry, but…” If I must be blunt, I simply say that I'm following the advice of medical professionals I trust.

Lead with a fact. I’ve got several at my disposal, and which one I use depends on the conversation. 

Follow with a fact. The other common view I hear is about the value of alternative treatments, both to avoid cancer and to treat it. For breast cancer, people who chose alternative treatments were more than five times as likely to die within five years than those who chose conventional treatment.” If that doesn’t give someone pause, nothing will.

Give a little. I will often talk about my own experience with things like meditation, qi gong, exercise and healthy eating to remind the other person that we don't have to argue in stark opposition.

Be kind, not silent. Say something like, “It’s hard to confront illnesses that could end our lives. I try to be both optimistic and realistic with this disease.”

Change the subject. I try to preemptively control the conversation by asking for specifics about his kids, his retirement, his house—anything other than his health or my own.

Hold up a mirror. As is true in dating, most people would rather talk about themselves."

There is a lot more over at Cure Magazine to read. But I think you get the point. I am about to sit down with a large meal for 14 people and will cross my fingers that I don't get stuck on the topic of my health. I don't allow politics at the dinner table because I would rather talk to people about how they are doing than the latest presidential tweet. Maybe I'll just take another bite of food so I can't reply with my mouth full.

Happy Thanksgiving all!

Not A New Ailment

So I had a medical test recently that came back abnormal. It was then repeated. Then I had another test which also came back not so good and now a referral to a new kind of doctor that I have never had before.

My doctor sent me a note over the weekend with a referral for the new department. I asked for a copy of the latest test results and if she had a preferred doctor for me to see.

I'm pissed.
I'm not allowed to have another ailment.
That's it.

F**k.

I'm really pissed.

More when I feel ready to talk about it. I just needed to vent.

Happy Halloween!

Today is Halloween. But we will not have trick or treaters until Friday night. Significant portions of the town do not have power and there are still trees downed all over the place.

We had a little storm on Sunday night with wind gusts here to around 50 mph but other places on the coast in the 80-90 mph. A little hurricane came up the east coast and joined up with another front moving east across the country. Their little party was slammed by a Canadian cold front which turned into a massive storm. We got 5" (just think if that was snow) of rain. So no trick or treating for safety's sake for a few days. (But I think all the smart kids are going to get their parents to take them to another town tonight and then back home on Friday so they can trick or treat twice.)

But I digress. Years ago, all my friends and I would dress up in our costumes and go to parties for Halloween. That was possible because we were in our twenties and had the ability to stay up after 10 pm and didn't really care how we looked like. And it was all about having fun.

One year, a friend showed up in regular clothes. We all asked her what her costume was. She said she was a serial killer 'because they looked like everyone else'.

This now makes me think. When you have cancer, you usually pretty much look like yourself and get around, until your cancer progresses and life starts to really suck because it includes a deadline.

So along that thinking, I could dress up as a cancer patient and say 'because we look like everyone else'. Or I could dress up as a rheumatoid arthritis/fibromyalgia patient for the same reason. (Or because my leg is in a big brace, I could dress up as Captain Hook with a peg leg... But that might be too much work.)

My point is that we can easily overlook people because their diseases do not show. We may have some very significant ailments that greatly impact our lives but they do not show to the rest of the world. We are just regular people with health issues. Do we need special treatment? Maybe, maybe not, or maybe just a handicapped parking space. Just remember that appearances can be deceiving and we can be hiding a lot under our normal appearances.

How Did I Get So Lucky?

Somehow I got the 'lucky' card in the health department. Somewhere in my genes I ended up with the crapshoot of everything. I do know I have my mother's bad back and Rheumatoid Arthritis but I also got my father's hair (which is still not completely gray at 89). But the rest of it, I have no idea.

So I always look for hints of how I could have gotten these lovely ailments. Then  find an article that asks 'Can Trauma Cause Fibromyalgia?' But I am not so sure I understand how it would help me. They list:

"The traumatic experiences that are usually correlated with fibromyalgia are the following:

• Certain types of viruses like Hepatitis C and HIV
• Childhood separation from parents that lasts more than six months.
• Emotional Trauma
• Living through a war"

I have not had Hep C or HIV. I was not separated from my parents for more than six months as a child. I have not personally lived through a war. However maybe emotional trauma could be from the PTSD of cancer twice could be a cause?

Maybe I am clutching at straws here, as I often do, but wouldn't it be nice to know how I got so lucky. Its a lot of frustration. And aggravation.

Ailments and Their Add-ons

You get one ailment, and it always seems to bring along its 'friends'. A few examples are cancer with chemotherapy causes digestive issues and temporary baldness. It can sometimes also cause long term cardiac issues - which can eventually kill you. With rheumatoid arthritis you can get things like Sjogren's Syndrome which causes dry eyes and other fun things. A few examples are:

"... [RA] inflammation can result in conditions affecting skin, heart, lung, eyes, mental health, etc. Conditions like osteoporosis, cataracts, depression, cancers, etc. are more common. And add to that infection based conditions like influenza, pneumonia, shingles, etc. and you can see that only attending to RA is a recipe for mismanagement of the disease." 

The technical term for these little 'buddy' ailments are 'co-morbidities' - a nice fun word. I have other ailments that cause more problems of a different kind, not co-morbidities but aggravating nonetheless. My back problems are magnified by my bad knees. If I limp because of one of my knees, I'm straining my back causes more pain. So do I ignore my knee pain, not limp to prevent my back pain?

My main goal (besides finding that magic wand that will cure me) is not to become a hypochondriac and rush to the doctor at every new pain. I take every little ache and pain as it comes. I ask my doctors to make sure what I am feeling is a normal part of my ailments then I grit my teeth and go throughout my day.

Its Not All Peaches And Roses

Life as an unhealthy person is not all peaches and roses.... Wednesday I wrote about Claire the amazing woman with CF who is full of energy and fun and talks about things we don't want to talk about - like dying. Anyway, she says she wants to wrote a book but not one about a 'happy sick person'. There are a lot of books out there about 'happy sick' people but reading them doesn't necessarily make you feel happy for them.

Honestly who can put a perky spin on being sick? One of the many downsides of life with chronic illnesses is that a little thing becomes a big thing. You have no idea.

Anyway, the world is papered with books about being cheerful, finding yourself, eating better, or walking/riding/hiking thousands of miles or something unimaginable to me.

After my first cancer diagnosis, I picked up your basic paperback fiction romance novel and found out it was about a woman who had some sort of heart defect and how she lived with it. I was not ready to read it and threw it across the room. Eventually a few years later I finished it and like it.

Later, after breast cancer I was older and more adventuresome in my reading. I read and liked 'Crazy Sexy Cancer' by Kris Carr. (I highly recommend that book and website and movie - hint, it's all about attitude). What I did like was the fact that her life was not all peaches and roses when she was diagnosed. She showed us how to cope and accept and develop the cancer attitude for making life good again - I mean what more can you ask for?

I have a bunch of other books that were noteworthy about life with cancer/other terminal/chronic ailment. If you search on the tag 'Books' on my blog, you might find them. I did read a graphic (cartoon) book that was about a woman with breast cancer (and I can't remember that title and I didn't put it in my blog). It ends when she goes to her last PET scan.... You get the idea.... I was very upset after reading that one.

I think somewhere out there is a happy medium of what life is like in the unhealthiness world in which some of us reside. I think Kris Carr is one who comes very close. But there are so many who miss the mark. Getting breast cancer and writing a book how our heroine starts wearing all pink, goes on long walks and ends up doing every Komen walk around the country, and finds God along the way, does nothing to help me feel better.

[I do not mean to offend anyone and their religion. Everyone believes differently. God did not give you your ailment. God is not going to cure your ailment. Talking or praying to God may help you feel better. However, he does not have the magic wand all of us sick people wish for.]

Anyway, we all do what we can to feel better after we find out we are not that healthy. Books about the not so rosy side of life post diagnosis can be very helpful. But the badly written ones, not so much

My Health Complicates Everything

I have too many ailments. Combined they interact and cause all kinds of problems. Normal people can have knee problems and then surgery to fix them. Me? Not so much.

I hurt my right knee skiing in 2001 and had arthroscopic surgery to fix as much as possible. My right knee became my bad knee. After surgery, the surgeon said if it ever stops locking up come back and see me again.

In 2015 I fell in our backyard and tore my left ACL. My left knee became my bad knee and my right knee became my good (or not quite as bad) knee. I then started over stressing my right knee which wasn't happy. In the fall of 2016, my right knee started locking up so I went back to my knee surgeon to talk about that.

Yesterday I went back to my knee surgeon who has been following me for both knees for the past year or so. And here's the bad news.

There is something going on with my right knee which causes it to lock up. It freezes and causes lots of pain. I feel my knee click back in place after a couple of minutes and the pain stops. I explained to my doctor that its not the aching pain that causes the problem its the locking and pain that I am concerned about. (Its not fun when it happens.)

Normal people would have the surgeon go in and clean up any tears that are causing the problem. He thinks its a piece of meniscus that sometimes sticks up and jams my knee. But with my medical history of rheumatoid and osteoarthritis, he is concerned that it won't heal well and I will be left with more problems.

I have to go for a second opinion. I can't wait. I just want my knee to stop locking up. It hurts like hell when it does that. My too many ailments make it difficult for me to be treated. (Never mind my medical allergies as well.)

Once Upon A Time, I Was A Healthy Person

I have many friends who, after cancer, get back to their old lives for the most part. I'm not talking about that 'new normal' bull, but just doing normal things like going back to work, taking part in all their family activities and all sorts of regular, every day life things.

Me, I did not get to go back to my regular life after breast cancer. My body had other plans for me. It decided it was time to fall apart.

After breast cancer, I got gall stones and had my gallbladder out six months after radiation ended. That winter I slipped on the ice, landed on my left hand and started all my lymphedema crap.

The following fall my back started hurting. When I realized I was taking OTC pain meds every day, I went to the doctor. I ended up being diagnosed with degenerating disks among other things. Later I sprained my ankle badly that included bone chips. I also hurt my right knee, again - previously injured skiing in 2001.

That went on fine until three years later when I was diagnosed with rheumatoid arthritis and fibromyalgia which is a whole barrel of fun. In 2015, I fell in my backyard and managed to tear my ACL in my left knee.

What else? I don't know. I have had basic dental stuff, possible recurrence with thyroid cancer that turned out to be nothing, and I can't remember anything. I have been to PT probably five times for different ailments.

So, I am not a healthy person post cancer. I have a very dilapidated body post two cancers. I must be 'healthy' due to all the medications I take and the doctor appointments that I have. In the first five months of this year, I have had 27 appointments with doctors and dentists.

I'm still here. I may not be the healthy person I once was. But I am here.

Finding Good Medical Resources

This always amazes me. People get diagnosed with a medical ailment and then don't use the good medical resources available. If you need medical information, you need to do a little research to find the resources.

A good patient takes time to learn about any significant medical ailment so they better understand their health. If you are educated you will be less stressed and potentially handle your ailment better. You really do not want to just jump on the internet and google your ailment. That is the worst thing to do.

A good first step is to ask your doctor who diagnosed you on where you can get good information. Its their field of study so they will know where to find information. My doctor at my breast cancer diagnosis sent me to breastcancer.org, komen.org and the American Cancer Society (cancer.org). He said not to believe any information I found on line.

If you forgot to ask your doctor the question, you can start by finding where that type of medical specialty hang out on line. For example, at my rheumatoid arthritis diagnosis, I googled 'rheumatology doctor associations USA'. I ended up at the American College of Rheumatologists (ascr.us). They had a link to patient information on their front page. Then I found the American College of Rheumatology (rheumatology.org). Those two links found me lots of information that really helped me.

For any kind of cancer, I always start at the American Cancer Society (cancer.org) I do not consider any other site to provide information of any value on cancer, except for the American Cancer Institute and a few other government type sites.

Another place to start are accredited resources for general medical information. The one's I consider good are:

• WebMD - webmd.com
• Mayo Clinic - mayoclinic.org
• The website for the hospital where I go - Lahey Medical Center - lahey.org.

I do not consider any other resources to be any good. Why? Because I cannot substantiate their credibility.

It always saddens me when I hear people quoting misinformation they found on line which is completely wrong or just incomplete. That does not help them at all. Take the time to learn about your health so you can be healthier and less stress.

Am I or Will I Get Better?

I get asked often, am I getting better? Have any of my doctors found a miraculous treatment for me?

The answers are and always will be a big fat 'no'.

There are different kinds of ailments out there. They are (in my non medical terminology):

• Acute - an ailment which happens and gets better. Think a cut, the flu, appendicitis, Lyme disease.
• Chronic - an ailment which occurs and lasts and lasts and lasts. Think things like arthritis, fibromyalgia, degenerating disks, etc.
• Terminal - an ailment which will kill you. "Terminal illnesses or infections are considered incurable when there are no conservative therapies available which will eliminate it from the body." Think cancer*, untreatable MRSA infections, etc. 

My medical history includes several chronic ailments that have no cures to date but are treated to minimize deformations and relieve pain. These are: rheumatoid arthritis, degenerating disk disease, and fibromyalgia. Then I get to add a couple of cancers on top of that as well as significant injuries which are not repairable (think bad knees). Every so often I get an acute ailment like the flu to add to the fun.

My treatments all focus on making me feel better. But nothing will cure all of me. So no, I will not get better. But thanks for asking.

*Cancer gets the asterisk here because sometimes cancers are treated as chronic after standard treated. You can never be sure you got all the cancer out of your body. 

I Was Thinking

I'm sorry, I know I shouldn't spend time thinking because it can cause all sorts of problems. I know. I should stop spending so much time thinking. I'll think about that for a while.

Anyway, I was thinking because I read an article on the giant Rheumatoid Arthritis Time Suck. When you have RA you spend a lot of time going to the doctor to deal with doctors for RA and then all the time dealing with the side effects of your RA medications. And your low immune system which makes you high risk for everything. And blood tests every 8 weeks. And more and more.

But then I get to add in the fibromyalgia time suck which causes time wasted for pain, resting after exertion, and going to doctors. And the post breast cancer required follow ups with doctor appointments, and trying to avoid lymphedema issues - which can cause all sorts of delays in itself. And the post thyroid cancer doctor appointments, blood work, ultrasounds and more. And for every ailment I can add more time sucks.

Basically if you have an ailment, it also has your schedule. You need to go to the doctor for it. You spend more time doing things if you have any impairments because you move slower. You spend time chasing down prescriptions, dealing with insurance companies, waiting at the blood lab, doctor offices, and for tests (and their results).

Being sick has a huge time suck to go with it. Just think, if you get the flu, you spend a lot of time in bed. But then it goes away and you go back to normal. And the time suck goes away. My time sucks never go away. So I get to waste time (thinking and) in the giant time suck of being sick.

Every ailment comes with a time suck.

Being High Risk

Normal people get exposed to something and they get told 'call us if there are any changes in whatever it is that is bothering them'. They get sent home basically with a 'take two options and call me in the morning'.

Me? I'm not a normal person. With my medical history? Of course not.

We live in a wooded area with lots of deer and mice outside. Our two cats like to go in and out and in and out and in and out. They bring us home presents and usually leave them outside. But sometimes they don't.

Yesterday I came home from the gym and took a shower. The cats went in and out and in and out. I decided it was time to treat them for fleas and ticks - the beginning of the season. They were mad at me because they don't like getting the drops on the backs of their necks. After I dosed him,  I picked up Evil Kitty and held him for a minute so he would stop pouting.

Fast forward to dinner time and my husband saw a red spot on my stomach.... What was it? A tick. Of course, I get a stupid effing deer tick.

I decided to go to the walk in clinic this morning to make sure it wasn't a big deal. So if you get a deer tick bite, it is more concerning when the ticks are attached for more than 48 hours. My tick was on me for about 4 hours at most.

Because (of my medical history) I am high risk (for everything), I was also given the basic anti-Lyme disease antibiotics in a single dose. 200 mg of doxycycline which was enough to make me nauseous.

So now I get to wait and see if I get Lyme disease. Most of the symptoms would be exactly what I have already - joint aches and pains, stiff neck, etc. So the one telling one for me will be chills and a fever.

And the antibiotics made me nauseous.

I'm so excited I can't wait!

Managing Weird Symptoms

So we all get these weird feelings sometimes. Something starts aching, or tingling, or twitching, or pinching, or just not feeling right. We start having little debates with ourselves (where it is perfectly acceptable to talk to yourself, ask yourself questions, and answer yourself back) how long has it been going on, is it that big a deal, do we want to go to the doctor, do we need to get some medical care (if dripping blood, the answer always apply pressure and get to the ER stat). Then we try to make decisions on what to do and when to call the doctor, or not.

Eventually, it goes away or gets better (with or without medical care) and we move on. We might have a scar or a bottle of left over prescription pills and or a pile of bandages we stick in the back of the closet. Or do we move on, can we move on?

I have found that before my second cancer, every medical misadventure just went by the wayside. I didn't overthink anything because it wasn't really that important. Well, I do admit to asking about potential cancer crap because of my first diagnosis once in a while but I never really stressed.

Now I have to institute the five day and two week rules to prevent over-stressing and too many doctor appointments. The time limit means if something is not getting better within the time frame, its time for a doctor. Significant ailments, like extreme pain, very high fever get the five day. Anything else is on the two week rule. If I make myself wait, usually I end up not needing the doctor, or so I make myself think.

Part of relearning to be a semi-normal person after cancer treatment is learning how to handle potential ailments. I cannot let myself fall into the trap where every new symptom is a really BAD thing.

I also have learned that I need to learn to tell the story about any symptom when I get to my doctor (my old PCP taught me this). I shouldn't go to the doctor and say 'this hurts'. I need to go to the doctor and say 'this hurts, for this long, when I do this, and this is what I have done to try to deal with it'.

But with two cancer diagnoses, my tolerance for symptoms is very different. Somethings I tolerate a lot of and somethings I tolerate none of. Its my body and I get a lot of the same reaction from medical professionals - I have a lot going on medically and am not the run of the mill patient. So its up to me to make sure the medical people understand what I need and how to make me feel better (if possible).

Okay, this is a long and whiny post on me and my weird symptoms and how I deal. Frankly, I just want to be healthy again...

Call me Ms. Grumpy

I am very grumpy these days. I think part of it is juggling my medical issues. But its also that I have been dealing with a lot of pain, and in new body parts. I am still on that never ending roller coaster of 'wait its another doctor appointment' each week. Also, my stupid CPAP machine doesn't help me. I have given up even using it because the mask doesn't work for me.

Last night I almost cancelled all my plans for today to stay home and pout. But I realize pouting never got anyone anything so I ditched that. I did get some good sleep last night which helps. And my reward today is getting my nails done this afternoon after I go to the gym.

This just goes to show the strain of living with chronic ailments (two cancer diagnoses, fibromyalgia, rheumatoid arthritis, multiple problems with my back) and conditions (pain, discomfort, depression). You go to the doctor to get treated but having to keep going to the doctor gets depressing. I think I have served my seven year tenure and deserve a year sabbatical from all medical appointments and medications (as if that would ever happen).

So today I am grumpy. I can't find my phone and know it isn't charged so maybe I'll just be phoneless today. That might not be a bad idea. I'll go to the gym and take my grumpiness with me and burn it out during cardio.

Cost of Exertion

I read an article over at Rheumatoid Arthritis.Net on the cost of exertion. What is the cost of exertion you ask? Basically, if you run a marathon, you might be a little tired the next day if you are a normal healthy person. Or, if you are me, you go to the gym and the grocery store in the same day, and you need a nap.

If you have a chronic illness (or ten) you have a greatly limited ability to do much of anything. Learning to accept your limitations is an important part of coping with your ailments.

Yesterday I met a friend for lunch and then we went shopping for just over an hour (because it started snowing like hell and we wanted to get home before the roads got bad). Then I needed a three hour nap. And today I am still exhausted.

But I am happy I am tired because I did a fun thing. As opposed to going to the grocery store and then needing a nap.

My life is a balancing act. I balance the exertion with recovery. I could spend all my time doing nothing, which would not be good mentally or physically. I wouldn't be in any shape to have any strength to take care of what I need to do. And emotionally I would be a wreck. Or I could work as much as I possibly could, and I wouldn't have the energy to take care of myself and would be in worse shape.

Or I could do what I can, laundry, groceries, and the gym three times a week (which is taking care of me) and then resting and recovering as needed. I spread out my exertion. My husband does all the heavy lifting and I do the laundry and groceries - but  he carries them up and down stairs for me.

But sometimes I can't do even the basics because I need the rest. That is what the cost of exertion is to me.

Stop Hiding From The Holidays With Ailments

Yesterday I posted a list of a holiday to dos:

1. Be present, don't buy presents
2. Wrap someone in a hug, instead of wrapping gifts
3. Send love, not gifts
4. Donate food, don't shop for it
5. Make memories, not cookies
6. Be the light, instead of hanging lights

Then I started thinking (sorry). I know I am guilty of not being present at holidays. At Thanksgiving, hosted here, I got tired and ended up lying down in our bedroom for long enough that my mother came down to lie down for a minute and talk to me because I was gone so long.

I really have limited abilities and get tired or end up in pain and need to rest. Normally, I would sit down and let everyone else do all the work. But if we are hosting, I never get to sit down because people keep asking for something so I have to get up. Now that I have had a chance to think about it I realize that I am not being present. I am hiding away.

So I have to come up with a plan. First of all I will talk to my husband and siblings because I know I can't do everything. I can also enlist one of my nieces and nephews to help.

I think I have dealt with my health for so long that I have learned to hide away so much that I start hiding away too soon. I need to work on staying out with everyone else and relax and let everyone else do the work and delegate.

That is actually pretty funny because last week I talked to an old friend who was stressing about the holidays. I told her I thought she should delegate part of the work to her husband and let him do it. I ran into her in the grocery store yesterday and she was shopping with her husband and he was doing the work. She had delegated and was very happy to do so. I have to take my own advice.

I (state your name) will stop hiding on the holidays and delegate instead.