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.

Saturday, August 23, 2014

Chronic illness and the internet

It's been months since I have had access to a reliable computer and blogging just does not work the same from my phone. I am so excited to have a working computer again! I love being part of the chronic illness community and it's so hard to blog surf from your phone. I miss reading other people's stories and hearing about their struggles.

It's amazing how alone you feel when you don't have access to other people with health problems. Don't get me wrong, I have great friends and family in real life that I rely on for many things, but sometimes I just need to talk to someone who gets it. I need to talk to someone whose life has been turned upside down as my has. I need to talk about my health without worrying about being perceived as a complainer. I need to talk about my struggles without worrying about being judged for the way I've handled things. I need so talk to someone who can say, "I've been there, and I understand."

I rarely talk about my health with people in person beyond a very basic summery of what is going on. I don't get into the day to day struggles that wear me down and make my life different then theirs. Sometimes I feel like I'm an actor in a play because so few people know what is really going on with me and my body at any given time. All they know is that sometimes I'm the life of the party and sometimes I just disappear for a while. On the surface I live a very normal life. I have kids, I'm involved in the the community, I'm married, I have a social life, all completely normal things. Sure I'm missing a job, but that could be explained away by my kids. Sure I don't make it to every school event, but that's easily explained away by laziness (and in truth, sometimes I do miss things because of laziness!). Even my wonderful spouse has very little idea of what it is like to be me. For example, he knows I'm in pain all the time, but doesn't know that every tiny movement I make causes pain. Typing causes pain, getting out of a chair causes pain, moving my arm to stroke my child's head causes pain, all things that no one else would think twice about. My husband sees the day to day effects of my pain but even he doesn't understand how such little movements can cause such agony, because he's never experienced it himself (and I don't want him to). Sometimes I just need to interact with people who have been there.

Thank goodness for the internet. I can't imagine how isolating chronic illness was before the advent of online communities. I'm so glad that at the touch of my fingers I have access to unlimited information and shared experiences.

Thursday, August 21, 2014

Chronic illness is hard

I woke up this morning wondering if I could physically get out of bed. I was in so much pain I didn't think I could actually move, I wanted to curl up in a ball and weep but even that would have hurt too much. Unfortunately for me life didn't give me the option of listening to body,  I had to get out of bed. As a lay there and thought of all the things I had to do today I kept thinking about how stupid it was that I couldn't listen to what my body was telling me.

This is why chronic illness is so hard.

Trying to be a functioning human being when I am sick is a never ending battle that I always lose. There are so many "have to" non optional things on my to do list.

When you have to take your kids to school.

When you have to take a sick kid to the doctor

When your bills have to be paid

When you have to call the insurance company

When you have to go to the pharmacy or go without medication

When you have to go to the grocery store or face starvation

When you have to argue with the doctor that overcharged you.

When you have to try to get a doctor's appointment (it's not as simple as calling and scheduling anymore everything has to be complicated).

When you have to feed your children even though they are too picky to eat the food you made, so it's a pointless endeavor. 

When you have to clean the kitchen so you don't attract bugs.

When you have to answer the phone because you know the person won't leave you alone until you do.

When you have to do laundry because you have no more clean clothes.

Sometimes it's just hard to catch a break with such a long list of basic things on the "have to" list. It makes days like today really rough.  The important thing is to do as much as you can on the good days and ignore as much as you can on the bad ones.

Wednesday, August 13, 2014

Depression is not a choice



I've written about depression before. In the wake of Robin Williams suicide everyone is sharing their opinion on depression and so I hesitated to add mine. However, after seeing a lot of information out there I felt there was something that needs to be made clear, depression is an illness, not a choice.

Depression is an illness as real as my physical illness, it's just harder to see an even harder to diagnose. Depression is often invisible even though it can be as deadly as cancer is. Depression is agony, just as cancer is. It can beat you down and destroy your mind and body and convince you that you are worthless and that no one cares about you. And unlike cancer, it's a secret illness. It's not easy to see the effects so you don't get a lot of support.

I was always taught that I had control over my life. I needed to be both physically and mentally strong. If I just did the right things and followed the right path then I would maintain control. Yes, bad things might happen to me, but I could still have control over my reaction to them. Depression (like health) takes away your ability to control. It takes away your self worth and your ability to cope, it convinces you that you can do nothing to make things better. It convinces you that no one wants to help you and that everyone would judge you if you told the truth. It convinces you that a councilor would just laugh and you and tell you to get over it. It convinces you that no one else feels the way you do and that you are utterly alone.

Depression isn't failure.

Depression isn't a choice.

Depression isn't weakness.

Depression is an illness. Much like my physical illnesses, depression isn't easy to cure, but there are ways to make improvements and to cope. If you are depressed and that voice is telling you that you are worthless and that no one cares, it is lying to you. I care, people care, they just don't know. So please, please, reach out for help. There are many, many people who feel the same way and can relate to how you feel, reach out to them and let them help you.


Friday, August 8, 2014

I don't want to

The problem with going on vacation is that I never want to come back to real life. I was able to keep on with denial for a few days last week, but today I officially can't ignore real life any longer. It's back to bills, to do lists, phone calls, cleaning, and doctors appointments. It's back to being pressured to do things I don't feel I can physically do and feeling guilty about it. No more carefree existence.

Blerg.

I can't ignore my health anymore either, I have to play catch up. I ate what I wanted and did what I wanted while on vacation, now it's back to eating healthy and carefully regulating what I do with my body. I couldn't live a carefree life forever, but it was soooooo nice while it lasted. 

The hardest part about being home for me is the boredom. I'm so entertained when I'm on vacation and this is what my gregarious nature needs. I don't like being stuck at home and here I am, again. It's so frustrating to have a constant need to be around people, but not to be able to do it because of health. If I had my way I'd be working full time and would be so busy I'd never be home. My body has other plans however. My health is so unpredictable there is no way I could hold a job more than a few hours a week, and it's not easy to find a 10 hour a week job. This is just one some piece of the frustrations that come with have a chronic illness. 

Still, there are good things about being home, things that remind me that I have a good life. I like sleeping in my own bed, I missed my friends, my children are on a stricter schedule which minimizes the meltdowns, and I like having my own space in my house (even if it's my closet) and having a place to go when I need silence (there's no silence in a hotel room when you have kids). 

So I'm trying to focus on the positives and not the things that drive me up the wall. I'm not a naturally positive person, I'm more of a realist, but I have learned that there is no point on dwelling on the negative. My health is never going to get better, so while I have my down days I try not to sit around feeling my sorry for myself all the time. After all, life goes on and there are so many good parts of life even if you don't have health. 






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