BEDS Challenge Wrap-Up and a Big Announcement!

I decided to wrap up the BEDS challenge early.  Life has been super hectic, and the weather has been craptastic and wiping me out.  Plus, I got some Big News, and once I share it, you’ll understand why I need to save my energy.

Okay, here is the Big Announcement:  I am starting service dog training on the 5th!!!  I’m getting my dog from Can Do Canines.  If you need a service dog and are in this neck of the words, I highly highly recommend them.  They are beyond fantastic.  Unlike some organizations, they will customize the training for individuals’ needs.  If your needs change during the course of your dog’s life, they will work with you to add new tasks as much as they can.  When I first applied, my primary disability was chronic pain and fibromyalgia, so I wrote on the application that I needed a mobility dog.  When I was diagnosed with POTS, CDC changed the category from mobility to seizure alert. (I do not have epilepsy, but this is the skill category they use for people with POTS.)  This way I can still get help with some mobility things, but we will also be able to work with the dog on helping with POTS episodes.

I don’t know anything about my dog other than it’s a he.  I’ve been jokingly referring to him as Eddie, because that’s the dog on “Frasier” which is one of the best shows ever.  Yep, I’m weird!

I still want to blog as much as I can about the training process and life in general, but removing the pressure of blogging every day is helping me breathe a lot easier.  Thanks for your understanding, and I hope you all have a wonderful weekend!

BEDS Day 14: Unpredictability

My efforts to get caught up on BEDS posts hit a bit of a snag the past couple of days.  The weather went from sunny to blarg.  The change in barometric pressure can cause excruciating joint pain and mind-numbing fatigue.

My current flare-up is a good reminder of why I don’t have a conventional job or go to school or do anything that requires a solid commitment right now.  I am reliable, but my body isn’t.  That may change once I have my service dog and I get on supplemental oxygen, but I’m not there yet.  This is the body I have, and I am learning to love it and use it to the best of its abilities, but some days this is easier said than done.

I’ll be back with day 15 as soon as I can.  Take care!

Long Overdue Update

Things have been rough on my end over the past several weeks.  I had the worse flare-up I’ve ever had since I’ve been diagnosed with fibro, and that made my mental health go down the toilet.  I used to kick myself whenever I shared anything that was less than positive, but then I decided that if sharing the truth will help even one person feel a little less alone in their own suffering, then it’s worth it.

The reason things got so bad was because the temperatures have been all over the place.  There was a 45-degree drop in temperature awhile ago, I don’t even remember when.  Up till that point, I was doing alright and seldom needed my narcotics.  I had managed to stretch out the bottle and it had lasted me over a year.  Then I ran out right before the 45-degree drop, which was so stressful on my body that I passed out and had non-epileptic seizures from the pain several times.  I finally got a new prescription and the drug bust commenced.  (As in, busting open the bottle and popping the much-needed drugs!)

I was extremely hesitant to share this with anyone, partly because of the stigma against narcotics and also partly because I am still recovering from being in a church community where some people were extremely opposed to all forms of western medicine.  When I have a flare-up, I still wrack my brain trying to figure out what I could have possibly done to bring it on, which does wonders for my mental health as you might imagine.  I’m learning the hard way that that kind of mental and spiritual damage does not go away overnight.

As for happier news, some of you may already know that I had been in the process of applying for a mobility service dog since last fall.  Well, I finally got it finished and my application has been accepted!  The next step is a home interview with a trainer in the next couple months.  I will share more about all this when there is more to share!

Okay, the brain fog is kicking my butt so I’m going to stop here.  Hope you’re all doing well!

Some Uncomfortable Realities of Life With Chronic Illness

I’m not going to lie:  I just had a really tough week.  I mean a Really. Tough. Week.  I’m not referring to lovely TMI symptoms, although there were some of those too.  I’m talking about the nitty-gritty, cold hard realities.  At first I was hesitant about sharing all this.  After all, there’s a reason no one tell you these things:  they’re uncomfortable.  But ignorance is where misconceptions start, so I’m taking the plunge and sharing the more uncomfortable realities of life with an illness that isn’t going anywhere.  Here goes!

1.)  My illness puts me on house arrest more often than I care to admit, especially in the dead of winter.  I just went five days without leaving my apartment.  My record is 18 days.  It’s not a matter of “just getting out more”, so if that is what you were going to say to me, kindly shut your cookie hole.  Sometimes I literally just can’t get out.  A mobility service dog will increase my chance of being able to get out, but until or less I am accepted for one, this is the reality.

2.)  In addition to being painful and miserable, chronic illness is as boring as hell.  This week I actually bawled like a baby, not because I was depressed, but because I was so blooming BORED!

3.)  On days I can’t work, socialize, or read, I will blow out brain cells watching TV because that is far better than letting soul-killing depression sink in.

4.)  Depression and suicidal thoughts are extremely  common in people who life with chronic illness.  Honestly, if I live alone, I’d probably be dead by now.

5.)  Rude comments are heartbreaking.

6.)  Sometimes shaving is a non-event.  This isn’t about making feminist statements.  It’s about making the statement that I am too exhausted and hurt to shave.  (Yes, hurty is a word.  Deal with it! :p)

7.)  On the really bad days, the “invisible illness” concept feels like a myth.  I don’t understand how people don’t see it.

 

Fear and Doctor Visits

It’s 2016.  I graduated from high school 10 years ago.  My brain doesn’t know what to do with that.  But I digress.

I saw the fibro doc yesterday.  I have to be honest: doctor’s appointments make me pretty anxious these days.  It’s not like I’m terrified of needles or anything like that.  At this point I’m so used to them that they’re no more painful than bug bites.  (It probably helps that the Great Vein Explosion of ’15 toughened me up a bit!) It’s more about the lack of control over my body.  Doctor’s appointments feel like a big neon sign that says, “Ha ha!  Look at her!  Her body’s broken!”  I’ve always felt different.  Hearing aids, being learning disabled, and wearing modest clothing in a world of Victoria’s Secret models will do that to a person.  But I am so used to those differences by now, and they’re either positive or neutral.  I have yet to find anything positive about having a body that doesn’t feel like bodying.  Everyone my age is getting married, having babies, going back to school, getting promoted, and I’m over here jumping for joy because I successfully walked backwards in my last PT session.

I also hate doctor’s appointments because I am just so sick of medical stuff in general.  At least it’s better than when I was on Lupron in that I actually have energy for a handful of non-medical activities.  I had to stop watching “Call the Midwife”.  When I’m not actually in a clinic or hospital, I don’t want to be thinking about that stuff, if that makes any sense.

I struggled with anxiety long before my body copped an attitude.  Frankly, most of my loved ones were well-intentioned but completely misguided when it came to helping me manage my anxiety.  People think telling an anxious person that there’s “nothing to be afraid of” is a good idea, but in reality it will backfire every time.  In my situation, there are plenty of legitimate concerns.  You can’t tell me I have nothing to be afraid of.  It’s not about pretending you don’t have fears.  It’s about looking at them and saying ,”Okay, what can I reasonably do to prevent this?”  I let go of fearful thoughts a lot quicker when I have the freedom to express them and let them go.

Things I Wish People Understood About Chronic Illness

1.)  Chronic illness does not take the weekends or holidays off.  I have had to spend Easter and New Year’s Eve in bed more than once.  It sucks but there is nothing I can do about it.  Please don’t make me feel any worse about this than I already do.

2.)  I’m not unreliable.  My health is.

3.)  Just because I may not use my crutches or wheelchair on a given day does not make me all better.

4.)  I get the best results when I combine traditional and alternative medicine.  It’s very annoying when people tell me that one is better than the other.  There are pros and cons to every treatment.  When dealing with complex illnesses, you have to pull out all the stops and use everything you’ve got.

5.)  I’m sick to death of unsolicited medical advice.  Please don’t go there.

6.)  It’s possible to be allergic to natural treatments.  Some natural treatments can also make symptoms worse for some people.  I am allergic to calendula (an ingredient commonly found in natural eczema creams), and ginger essential oil makes my nausea worse.  This does not mean I am refusing to use all natural remedies.  This means I know my body.

7.)  I know more about my conditions than some doctors.  That is not half as frustrating as when they pretend they know when they don’t.  If it’s not their specialty, it’s understandable that I know more than they do.  I wish they’d admit they don’t know what they’re doing and send me to somebody who does.

8.)  Losing fantastic doctors to moving and insurance changes can be very stressful and devastating.

9.)  Having multiple chronic illnesses is more common than most people realize.

10.)  Taking medication with significant side effects does not mean I am being cavalier about what I put in my body.  It means that I have carefully decided that the side effects are nothing compared to the disease itself.

11.)  There are times when I have to clear my social calendar and focus on taking care of myself for days of even weeks at a time.  Complaining about this will not change it.  I promise i hate this more than anyone else does.

12.)  Treatment is rarely one-size-fits-all.

13.)  Getting an accurate diagnosis can take months or years for some people.  I started having symptoms of endometriosis in 2006 and was not diagnosed until 2009.  Thankfully my fibromyalgia and IBS were diagnosed almost immediately, but not everyone is that lucky.  I’m having joint pain and dislocations of unknown origin, and I have no idea how long it will take to get that diagnosed.

14.)  My definition of an “improved quality of life” is not the same as a healthy person’s.  To a healthy person, it means being able to do as much as you want.  To me it means being able to do some of what I want, and getting to a place where I am content with that.  I don’t do physical therapy with the intent of someday running a marathon.  I do it with the intent of hopefully someday having a bit less pain and fatigue when I walk and do everyday tasks.  It’s not pessimism; it’s realism.  I’m a human being, not Superman.

How about you?  What do you wish people understood about live with chronic illness?

More in-depth update

I feel like my health situation has just about turned my life upside down, and in so many ways I don’t even feel like the same person I was when I started blogging (in both good and bad ways).so I thought I would give a more detailed update.

I’m pleased to report that I can now eat dairy in moderation!I can also eat any fruits and vegetables, though I have to be careful with acidic stuff on days I feel nauseous. I am gluten-free for the time being, but eating a couple of regular crackers today did not cause any symptoms. So I may be able to reintroduce more gluten into my diet so I can at least have the occasional treat. I really need a soft pretzel. Just thinking out loud here!
I’m currently experiencing a significant level of pain and mobility issues due to my fibromyalgia. Typing can be very exhausting and painful because of the pressure on my joints.i’ve got Siri on my phone and that is how I am texting, emailing, blogging, and using Facebook.I am having intermittent issues with blog post formatting, so please excuse grammar errors and weird spacing in my blog posts.
I’ve been asked how I am able to hand write, draw, and crochet. Those activities don’t put pressure on my joints in the same way as typing. I hold my pencils sideways, and I use pens and crochet hooks that have grips.The battle plan for my fibromyalgia treatment is kind of up in the air. There are lots of options for treatments, therapies, specialist at Cetera.there is a lot to be said for and against each option, just like with any kind of medical situation.
I honestly don’t know how much I will be writing about my treatment in the beginning. This is both because blogging takes a lot of work right now, and because I am still in the adjustment phase. It may be helpful for others to read about that phase ofA diagnosis, but I am not ready for that yet. Besides, a huge part of the emotional survival pieces thinking and writing about non-illness stuff. I think it would really help me if I put more effort into blogging about those things when I do have the energy to blog.
Have a great weekend, and I will be back on as I’m able!

The Stigma Against Physical Illness and Traditional Medicine

As I’ve mentioned before, health and I have been having a bumpy ride the past several months. My endometriosis came out of remission last year. Along with that came free gifts of fibromyalgia, irritable bowel syndrome, and asthma.

Last fall, I made the difficult decision to do a 6-month stint of Lupron injections, and then I saw firsthand just how stigmatized physical illness and traditional medicine have become. In the age of natural remedies and anti-doctor sentiment, people who choose traditional treatments are harshly judged and verbally attacked. The rheumatologist who diagnosed my fibro gave me an earful about how I never should have finished the Lupron course, and why did I even left them inject me in the first place? (Dr. F, if you’re reading this and wonder why you’re not my doc anymore, your lovely attitude may have something to do with it! Just saying!)

It’s one thing to have legitimate concern about side effects. Lupron came with plenty of them, and that was part of the reason I put off going on the shots as long as I did. But berating people for making informed decisions about a condition you don’t know crap about is WRONG. If you haven’t felt like you’ve been socked in the stomach or like you’ve been impaled with shards of broken glass, then you have no business telling someone they shouldn’t see a specialist or use narcotic painkillers as needed. (Yes, there are appropriate ways to use narcotic painkillers, and most people don’t lose the judgy pants long enough to find that out either.) If you haven’t been dependent on inhalers to jumpstart your lungs when they’re threatening to take a vacation, you have no business telling someone they shouldn’t put steroids in their body. Yes, that comes with a certain degree of risk, but letting asthma go untreated is much riskier. People don’t understand that choosing health treatments, whether traditional or alternative, is taking a calculated risk. You take a calculated risk every time you get in your car and drive somewhere. You could die in a car crash. That doesn’t erase the benefit to be gained from driving to work or to a social event or wherever.

It isn’t just traditional medicine that’s stigmatized. Illness itself is stigmatized as well. People often say that mental illness is no more shameful than physical illness, but honestly, I get more flak about my physical health issues than my mental health issues. Statements like, “You’re too young to be that sick” or “You must have done something stupid” or “G-d hates you” are signs that our society is not as understanding about physical illness as we’d like to think. The natural remedy fad is partly to blame for this problem, in my humble opinion.

I’m all for natural remedies that are safe and effective. I have a handful of natural remedies that can sometimes reduce or eliminate my need for heavier pain medication. But sometimes the natural stuff just doesn’t cut it, and it’s not always safe. Carbon monoxide is natural. It’s also deadly. It’s also possible to be severely allergic to natural ingredients. For instance, California Baby is a popular organic lotion brand. I have nothing against them, but I can’t use their stuff because it contains a plant called calendula, which is an effective eczema remedy for some people. Well, it turns out I am highly allergic to calendula, which I learned the hard way. So that natural remedy is out of the question for me, and people have had the gall to tell me I’m just being stubborn and I should try the calendula again. (I’m as stubborn as all get-out, no point in denying it, but I most certainly should not try the calendula again. I’m a fan of breathing and not breaking out in hives, thank you very much.)

So what do I want people to take away from all this? I guess I want people to listen more and talk less when it comes to other people’s health issues. (That’s the nice way of saying you all need to shut the frack up.)