Monday, September 15, 2014

I am here and I am not invisible

Invisible Illness week technically ended yesterday, but I've been meaning to write my "just one" post and this is the first chance I've had to address it. I love this year's theme of "just one,"

I am just one.

I am just one person with an invisible chronic illness.

And I matter

I am more than my symptoms, I am more than my disease.

I have dreams, I have goals, I have feelings just like everyone else.

I have an invisible illness that causes me pain and misery, but it is not who I am.

I am who I am

My life matters

My life is important

I am important

I may not be physically strong

I am strong

I am just one

I am one person whose life has been effected by illness

I am one person with a blog

I am one person trying to make a difference

My illness is invisible

I am here and I am not invisible

Tuesday, September 9, 2014

5 things people with invisible illness wish they heard

1. What are you able to do and not do?

People make a lot of assumptions about me. If they know about my illness they assume I'm useless, if they don't know about my illness they think I am lazy. What I really wish is that people would just ask me questions. I know you can't tell from just looking at me how I'm feeling and I really don't want to wear a sign around my neck. So please just ask.

2. What can I do to help?

If you see me struggling with something, just offer to help. It's really hard for me to ask for help because I feel like a burden, but if you offer sincerely I will take you up on it. Instead of vaguely saying, "let me know if you need anything" ask what I really need help with.

3. I care about you.

Sometimes it can be hard to know what to say to someone who is suffering. Unfortunately platitudes are not very helpful to someone who is hurting. What is important is that they know you care, even if you don't have the right words or the ability to make things better.

4. It's okay if you're having a hard time

Chronic illness is hard. It takes a lot out of you and it beats you down and yet sick people are expected to pretend like everything is okay and it's exhausting. It takes ten times more effort for a sick person to physically get out of the bed in the morning, and yet no one acknowledges that sick people do it every single day. It can make all the difference in the world for someone to acknowledge that they see you and how hard you are trying.

 5. I believe you.

When you have an invisible illness you are constantly doubted. Doctors don't believe you, pharmacists judge you, friends think you're just depressed, family members don't understand why you can't just get over it. The single most important thing you can say to someone with invisible illness is "I know you're illness is real, I believe you."

Sunday, September 7, 2014

10 ways to distract yourself from pain

Holy Pain Batman, I'm dying today. Today's misery was brought to us by my damaged self esteem due to weight gain. What do you do when you want to lose weight when you already eat well? Everyone knows you exercise, so I did. And instead of doing the easy on my body exercise I  normally do I decided to jog on the treadmill. That doesn't sound like a crazy activity, but my body does not like anything that involves impact, so my knees are killing me today. If only I weren't so vain!

So in honor of my stupidity I was thinking about all the best ways to distract myself from pain. These are all things that have been suggested to me one time or another. #sarcasm #sorrynotsorry

1) Ignore it- because if you pretend it's not there it won't actually be there?

2) Embrace it- Because we all know pain is just our brains telling us something, so if you embrace the pain your brain will stop telling you to feel it?

3) Exercise- Because nothing works better than continuing the activity that caused the pain in the first place!

4) Rest- Theoretically good advice, but when every muscle in my body is twitching from pain the muscles just won't stop and listen to me, damn them.

5) Voodoo- Because it works people.

6) Drink special vitamin mix- Because it cured my (fill in the blank here) condition, and it only costs 405 installments of $99!

7) Stop being so self centered- Everything is not about you, maybe you wouldn't be in pain if you weren't trying to be the center of attention.

8)  Go on a cleanse diet- You hurt because you're full of toxins, stop eating and you'll be cured!

9) Sing a song- Music soothes the soul, even a tortured one.

10) Think about something else- Perhaps try to write that blog post you've been putting off, perhaps you finish your essay for your college class, or an article you're working on writing. It will totally work, you writing will look like this:

The horny spotted toad (OUCH) lives in the rain forest (I HURT) and survives on eating hot-dogs (WAIT, HOT-DOGS? THAT DOESN'T SOUND RIGHT, OH WELL). The toad is hunted my man (PAIN OH PAIN) for their rather tasty eyeballs (EYEBALLS, IS THAT RIGHT? SOUNDS CLOSE ENOUGH). The toad is indigenous to the island (MY LEGS ARE SHAKING THEY HURT SO BAD) of Australia (HUH, AUSTRALIA ISN'T AN ISLAND, WHAT IS IT? HMM, I FEEL LIKE I SHOULD KNOW THIS). The toad was first (CRAP THE PAIN IS NOT GOING AWAY) discovered by an Entomologist (DON'T THEY STUDY BUGS? HMMM, I'M PRETTY SURE TOAD'S AREN'T BUGS, BUT I CAN'T FOCUS RIGHT NOW) Clifford Dingleberry (OUCH, OUCH OUCH). Clifford was originally looking for a new source of (I'M FREAKING HURTING) water because he (I'M GOING TO DIE)  thought all the water in the world was poisoned by his arch enemy Moriarty (WAIT, ISN'T THAT A DIFFERENT STORY?). Clifford never found a new water source (I FREAKING CAN'T THINK ANYMORE, THIS IS POINTLESS).

^ This is only a small sample of what it is like for a normally intelligent person who experiences chronic pain. It sucks and as much as you try to distract yourself, your pain level gets high enough that distraction just isn't effective. One day I write a serious post about tips for pain distraction, but the truth is there is only so much you can do. I obviously use sarcasm to distract myself, too bad nobody thinks it's funny besides my husband and my sisters (bless them)!

Friday, September 5, 2014

Making finaces work with chronic illness

Chronic illness is very expensive, there is no doubt about it. What makes it doubly hard is that if you have serious chronic health problems it becomes impossible to work. As a family of four we are often asked,

"how can you possibly make it on one salary?"

It's a fair question. First I should add that we are very lucky that both my husband and I have degrees and my husband has a masters degree, so even with living on his income we do okay. Plus we live in a part of the country where things are cheap, housing in particular. Still, having a family on one income means you have to make a lot of choices and you have to decide what your priorities are. I do a lot of things to save money that lots of people think are crazy, but my theory is every penny saved means I can spend it on something I really want to spend it on (like travel) or use it to pay off medical bills.

- We do not spend more money then we have. If we don't have the money, then it doesn't get purchased. When our computer broke, we went six months without a reliable computer because we had a lot of other bigger expenses that we decided were more important. We bought our computer when we could pay in cash so we didn't waste money on interest. No point in throwing money down the drain.

- As I said before I do a lot of work to save what seems like a small amount of money, but it adds up in the long run. For example, I make my own laundry soap, dishwasher soap, and household cleaners. This is a lot of work for someone with chronic illness but it saves me a lot of money. I hate grating soap to put in the laundry, but I do a few minutes at a time all day long and by the end of the day I'm not too worn out and I've got laundry soap for pennies on the dollar. I also don't dry my laundry in the dryer often. Electricity is expensive here and I save about $50 a month by not using a dryer. It's a huge pain to hang everything out on the line, but that $50 a month adds up, plus we don't have to buy a new fancy dryer.

- I save a lot of money on food by cooking from scratch. We don't buy packaged foods often, we buy things whole and it's a lot cheaper. My kids don't get to buy lunch at school, they have homemade cookies, and often sandwiches with homemade bread. We spend about $400 a month on food for a family of four. This is without couponing (I use a coupon here and there, but stores here don't double coupons so it doesn't help much). We still eat fairly healthy too. We get most of our fruit and vegetables from a coop that I'm a part of that buys fruits/veggies in bulk for discount prices. It's a pain because it involves getting up at 5:00 am on a Saturday morning to drive downtown to get the veggies, but it saves a lot of money and allows us to eat healthy. We also buy generic products, and very rarely main-brand. All of this is a lot of work, especially for someone who is sick but I spread it out so it's more manageable.

- We don't buy fancy things. My kids don't have the latest and greatest clothes or toys, most of their stuff is from the resale shop or they got as a gift. We are practically cave men when it comes to electronics, we have a wii that was a gift and that's the only gaming system we have. We just barely got smartphones for the first time, and the ones we got are not fancy. We don't have cable, we just watch Netlfix or Amazon Prime. My kids don't know what commercials are because they've never seen them. My kids are fairly young, but they already complain that their friends have better stuff then they do (I'm not buying my seven year old an iphone no matter how much money I have), but it's too bad for them. We are being frugal and teaching our kids the importance of hard work at time same time.

We're not perfect when it comes to saving money. I'm sure Suzi Orman would have plenty of things to yell at us about, but we've found ways to live cheap enough to survive on one income. Having a chronic illness is so stressful enough, it's unfortunate that we have to stress about money too.

Saturday, August 30, 2014

30 things you may not know about my invisible illness

In honor of Invisible illness week coming up, here are 30 things you may not know about my invisible illness. I did this last year, and it's interesting to see that a lot of my answers have changed.

1. The illness I live with is: Lyme Disease and Fibromyalgia

2. I was diagnosed with it in the year: November 2011

3. But I had symptoms since: April 2010

4. The biggest adjustment I’ve had to make is: Changing my dreams. I dreamed of a fulfilling career and living a busy and fulfilled life. I'll never be able to have a real career now, so I've had to change what I want for myself. Now I find fulfillment through other venues like blogging and helping others, though it's a daily struggle to accept the lot I've been given.

5. Most people assume: That I'm either just fine or totally useless when I'm really in between. There are a lot of things I can do if I schedule my life right, but I can't do whatever I want whenever I want. I wish people would just ask me what I'm capable of instead of just assuming either way.

6. The hardest part about mornings are: Trying to ignore the pain I feel as soon as I wake up. The pain can be overwhelming and is a huge obstacle to getting my day started.

7. My favorite medical TV show is: None, they're all too fake. They make me angry because they portray doctors who care, and no doctor has ever sincerely tried to help me.

8. A gadget I couldn’t live without is: My kindle. It's easy to hold when I'm lying down and it connects me to the world even when I don't feel well.

9. The hardest part about nights are: Getting to sleep. I take enough sleep aids to knock out a horse and yet I still can't sleep.

10. Each day I take __ pills & vitamins. (No comments, please) Six or seven, I'm lucky to be on the low end of the chronic illness spectrum.

11. Regarding alternative treatments I: Am open to the possibilities but will not try anything that proclaims to be a cure. If there were really a miracle cure out there, I would have heard about it. I've tried essential oils and I like them for certain things, but they will not cure me so please stop trying to sell them to me!

12. If I had to choose between an invisible illness or visible I would choose: Invisible. I like that my illness is not on display because there are times when I can pretend to be healthy.

13. Regarding working and career: A long lost pipe dream.

14. People would be surprised to know: In my worst moments, I hate healthy people. Yeah, I'm not a great person.

15. The hardest thing to accept about my new reality has been: No career. You don't realize how much everyone defines themselves by their job until you don't have one. I am constantly asked, "what to you do?" And I have no answer for that because I am a professional sick person.

16. Something I never thought I could do with my illness that I did was: Live a joyful life. Things may not be how I imagined they would be, but I have a good life.

17. The commercials about my illness: Are a joke. They promote fibromyalgia drugs that make it look like one pill will give you your life back. The truth is the side effects are worse than the disease!

18. Something I really miss doing since I was diagnosed is: Rock climbing. It was a great way to deal with rage and frustration and now I've had to find other (less effective) ways to burn off anger.

19. It was really hard to have to give up: My social life. I like being surrounded by people and chronic illness can be very lonely and isolating.

20. A new hobby I have taken up since my diagnosis is: Blogging. I don't profess to be a writer, but it helps to get my frustrations out through words since I can't physically work off my anger anymore.

21. If I could have one day of feeling normal again I would: Take my kids out for a fun filled day. Maybe take them on a hike.

22. My illness has taught me: Patience and empathy. I'm not a particularly patient person, but nothing teaches your patience like losing control of your health. I'm also a lot more empathetic to other people's problems now that I've experienced some major hiccups in my life.

23. Want to know a secret? One thing people say that gets under my skin is: Telling me that If I just tried harder, or exercised more, or tried this expensive natural product, or "insert sombody else opinion about my health here" I would be cured.

24. But I love it when people: Make an honest attempt to understand my illness and what my life is like. I have no problem answering questions about my health, I'm an open book.

25. My favorite motto, scripture, quote that gets me through tough times is: "The only way to get through life is to laugh your way through it. You either have to laugh or cry. I prefer to laugh, crying gives me a headache." Marjory Hinckley

26. When someone is diagnosed I’d like to tell them: It gets better. It will be a rough road, but it gets better. You are strong enough to handle this, but don't be afraid to ask for help.

27. Something that has surprised me about living with an illness is: Life goes on, whether you're healthy or not. You just find a way to keep going.

28. The nicest thing someone did for me when I wasn’t feeling well was: Some friends came by and cleaned my kitchen, really cleaned! They even cleaned out my refrigerator! It was a small thing but it meant to world to me because I hate having a dirty kitchen.

29. I’m involved with Invisible Illness Week because: I want to promote awareness about invisible illness. Too many people assume that if you are not physically showing manifestations of your illness that you are faking it. The truth is there are millions of people with legitimate chronic illnesses that get treated like they are making them up.

30. The fact that you read this list makes me feel: Surprised you made it all the way through, and grateful.

Thursday, August 28, 2014

Chronic illness made me old

Theoretically I'm 30, but I'm really an 80 year old. 

- My knees make loud creaking noises when I bend them, loud enough for other people to hear. Stairs are my nemesis. If I lived in a two story house I would need an elevator. 

- I was invited to a social gathering this week that started at 8:00 pm. I didn't go because it was too late. Sleeping is difficult for me and so it involves a long and tedious routine to prepare for it, which still doesn't always work. I have to start my routine around 9:00 if I want to get to bed at a decent time. I'm 30 years old and any activity that starts after 7:00 is too a late for me. It wasn't that long ago that my night started at 9:00 pm! 

- My hands are always shaking and I have a hard time gripping things. 

- I'm cranky and annoyed at people who are fit and active.

- I do yoga for old people because regular yoga is too hard on my joints. Seriously, it's called "Yoga for Arthritis." 

- I wear arthritis gloves to help with the pain of using my hands. Yep, a 30 year old wearing arthritis gloves. I've always wanted to be a trendsetter. 

- I have no brain power thanks to fibro fog/ lyme brain and so it is difficult for me to grasp new concepts, especially new technology. This is what I get for being frustrated at old people who couldn't learn how to double click when I taught a community computer class. Now I'm the one complaining they changed Windows again and I can't figure out how to do anything. 

- Loud noises give me headaches and cause sensory issues. I want to yell at the obnoxious teenagers that live on our street and blast their horrible music. Stupid young people. 

Monday, August 25, 2014

Testing for Lyme Disease is useless

Labcorp has published new testing protocols due to some new regulation by the FDC (who like to ruin all competent medical care). They state that will no longer run a stand-alone Western Blot test. They will only run a Western Blot if there is an equivocal or positive ELISA test performed first. At first look this is not that alarming, until you realize that the ELISA is a completely useless and inaccurate measure of whether or not someone had Lyme disease. ELISA misses Lyme Disease on average 50% of the time. I don't know about you, but to me that sounds like a useless test. I could just guess and would be accurate 50% of the time!

When requiring a highly inaccurate ELISA test and then required a "not quite as bad but still not accurate" Western Blot it's practically impossible to get a Lyme Diagnosis.  52% of Lyme Disease patients are negative on the ELISA test and positive on Western Blot. If it's required to have a positive on an ELISA before getting a Western Blot, these patients would be diagnosed incorrectly.

Canada actually has a health warning out about how the ELISA is known to be an inaccurate test and shouldn't be used for diagnosis.The general problem with both Lyme tests is that they are based on the patient’s antibody response to the New England strain of the causative bacteria, Borrelia burgdorferi. Unfortunately, according to recent research at Johns Hopkins, those tests can miss up to 60% of cases because they are not sensitive to other strains of Boreelia burgdorferi.

It doesn't take a genius to see this as problematic, so why are these tests still be used as diagnostic criteria? Probably because of pressure from the insurance companies. No positive on our awesomely inaccurate tests? Too bad, we won't pay for your treatment.  A Lyme Disease diagnosis should be a clinical diagnosis by a competent doctor. I'm so mad about this I could scream.
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