Acceptance

Accepting the reason you haven’t felt yourself is because you have a chronic illness there is no cure for is…. Difficult.

I’m still working on accepting that I have fibromyalgia and will for the rest of my life. Though I think I’ll start hoping for a miracle cure in the next 20 years.

This last week or so has been full of realizations. All different kinds. I’ve cried a few times too.

1. If I’m having a good day I shouldn’t procrastinate.
2. Now I know why I stopped eating tomato soup.
3. Now I know why I always need to shower after a haircut.
4. It’s ok to admit you’re in pain.
5. Admitting you’re in pain is easier than trying to ignore it.

I’m trying really hard to start good habits now…. And not feel guilty for being horrible to be around cause I wasn’t well before.

Labeling the Pain

Monday – 4 days ago – I had my follow up with the rheumatologist. She diagnosed me with fibromyalgia. She also happened to deliver her diagnosis in a way that you might tell your significant other/partner that someone needs to get milk on the next trip to the grocery store. Other than her somewhat – odd – bedside manner – she’s a great doctor. (I finally know how to spell fibromyalgia. I think. I will by the end of this blog post.)

I have taken time off of work because this has rocked my world and I’ve needed time to process….and because I’ve been kicking my caffeine habit. Sidenote: It’s a little weird that I learn about my caffeine intolerance and start working on kicking the caffeine habit BEFORE I find out about the fibromyalgia and that caffeine is bad for fibromyalgia. Anyways. This is day 6 of no caffeine and the second day of not having a migraine because of eliminating the caffeine.

Looking back, I’m not sure when the pain got bad. I feel like I haven’t been myself for most of the year. But there have been a few periods where I was able to catch my breath and try to get back to normal. Looking back at my blog, April was a VERY bad month and I’m pretty sure January was too. I have had a few realizations this week but, before I get to those…. Fibromyalgia sucks. I sure as hell did not seek the diagnosis out. However, it’s not RA, or Lupus, so things could be worse! On top of that, I’m not really surprised by the diagnosis based on my general sensitivities, intolerances and food allergies.

Most importantly, I now have a label for the pain I have been experiencing for I’m not sure how long, probably close to a year. I have a label for the weird feelings or things I’ve been dealing with for over a year. Like, the days when my clothes hurt…. figured it was my allergies. Nope, it’s my brain!

Because, you see, being able to label the pain I’ve been experiencing means that I can acknowledge the pain exists. I can acknowledge the pain is not going anywhere (that sucks yup. But calling yourself weak because you’re in pain other people don’t experience is worse.). I was consciously ignoring the bad feelings and hoping they would go away. I don’t need to do that. Ignoring the pain and hoping it will go away takes way more energy than accepting the pain is there and not going anywhere. Then instead of spending energy wishing it will magically go away? I can work on making it not as bad.

I’ve done a lot of learning this week. Reading The Spoon Theory was life changing. It’s a great way to explain why some days are great and some days are total shit. You don’t get the same number of spoons every day. I shared it with a friend who has RA and she was surprised how well it applied to life. She also shared with me how she copes with pain. Acknowledging the pain exists means you can put it on the back burner and then move on with life. I like her metaphor too.

Building on her metaphor – I think this applies really well to life. Anyone with chronic pain automatically has one less burner to cook dinner with than someone without chronic pain. The severity of the pain experienced is illustrated by how full that pot on the back burner is. Really bad days means that pot is threatening to boil over, even on a simmer, any minute of the day. Good days mean there’s little threat of the pot to boil over since it’s on a simmer. But, like everyone knows, that is open flame, (we have a gas stove), so you still need to be attentive.

Now where was I? Besides distracted?

All of this has helped my sanity, but it’s not enough. Per my rheumatologist’s recommendation, I’m also trying cymbalta. Hopefully it will my brain. Finding this little bit about chronic pain and the brain helped me figure out more too. I’m still trying to figure out how much exercise is enough and how much is too much. I’ve done some reading so I know I need to start slow.

Last night is the first night of sleep I’ve had since I don’t know when where I actually felt like I got a full night of restful sleep. I’m assuming both eliminating caffeine and adding the cymbalta have helped this. Next thing to do is look up sleep stages. I think I learned about them like 8 years in a PSY 101 class. I should have a review.

Besides the exercising and doing some more learning on my own I have to find a support group. Something where I can see other people, not something online.

I will own my health.

Now I’m going to knit something light weight because my hands are tender.

Why health insurance in the US needs fixed, reason 24664335789

Or, Cigna sucks.

In no particular order:

Points to share in an email to the CEO of the wonderful corporation I’m a fucking team member of….

– Health insurance illustrates a company’s social policy, look to employee policies to see how a corporation really truly feels about the employees
– Employee health – need insurance that doesn’t leave employee’s afraid to go to the doctor
– Since bottom line is so important… Missed work
– Communication with understanding of the employee’s position – not just information providing
– Discrimination against people who have health problems they have no control over – and don’t even mention morale.
– Other human resources policies reflect company’s interest and understanding of employee and family and health – like not being able to carry over much PTO – which is a great way to prepare for maternity leave
– Did you really actually think this insurance change was beneficial to employees? Was research done? Objectively?
– How much was saved in cost for the company by switching insurance?
– Human resources can’t respond to an email in less than a month
– Cigna communication is stressful and patronizing – statement about saving money received same day I get a bill for more than what I saved.

Note to self, you listening self?

So I believe that everything that has happened to me makes me who I am. Everything.

The fact that I had three foster families before age 5 is part of who I am. The fact that I cut myself off and on again for like five years is also part of who I am. These things, respectively, help me appreciate people’s experiences with families and cause me to be more empathetic of the pain caused by internal conflict. Among other things, obviously. Baggage is a bitch but it’s still just baggage.

Therefore, that means food allergies are part of who I am too. Even migraines. Even migraines that last 4 days and rebound on the 5th day.That’s life it’s all or nothing.

But that doesn’t mean I have to listen to the maniacal little voice in the back of my brain that likes to go through what if or worst case scenarios. That just means I have to accept that I have to take the necessary (and healthy) steps towards telling that voice, “shut up bitch, I’m too busy for you!”

Depression

I’ve been feeling like maybe I’m finally kicking the depression that creeped in when I was job searching at the beginning of the year. I need to remember a depression lies…. Even if it’s just seemingly harmless things it whispers… Like you’re too tired to do anything. Maybe I’ll find the energy to start updating this here blog more often – with more than random musings and rambles.

Job helped, obviously. Seeing the Roger Waters concert too. Gaining weight on steroids because of a super bad sinus infection did not help. Neither did our cat dying. Hub getting a raise helps too. Anyways, been lots of back and forth, up and down, with a little sideways these last few months.

When back from Memorial Day weekend I’ll have survived my first 90 days at the job that isn’t my first choice but that I could do much worse than. And I had the idea of investigating whether the company I work for that wants to get more involved in giving back to the community would be interested in awards grants to nonprofits instead of just cutting checks. That could make my job more interesting for what I’m interested and passionate about.

This long weekend should be good for me (us) too. We actually watched a movie last night. And maybe I’ll get around to doing my nails. It is a pretty safe assumption I’ll finish a pair of socks this weekend! I’ll think I’ll start another pair too.

Sick Tea

It’s weird to just have a regular old cold, I’m more familiar with the flu or bronchitis thanks to my asthma (and allergies). Between the bronchitis the end of last year and this week’s cold I have found the tea I like when I’m sick (except for near bed time).

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Both teas are from The Republic of Tea. The “get wellness” tea is a caffeine free herbal tea with herbs popular for immune system support. It tastes spicy, yet.. Fresh. The other tea is a black tea chai. The chai spice accents the spice in the herbal and the spices help with congestion. The caffeine in the black tea also helps to clear that mental fog that always happens with congestion. I steep for 5 minutes so it’s strong enough to taste through congestion.

If you don’t like chai? I’d go with a black tea with some nice malt flavor.

I add vanilla soy milk because I like the addition of the vanilla flavor. I also happen to be lactose intolerant AND dairy adds to mucus. Finally, a spoonful of raw honey from a local honey.

One tea bag of each in a big mug. I’m also a huge fan of an electric kettle for boiling the water.

And I posted this on my ip@d on the couch ’cause I’m lucky enough to have a cold and back spasms at the same time.

Recent food allergy experience

I’m allergic to tree nuts.* I tested allergic to ALL kinds of tree nuts and I had symptoms like dry cough, scratchy throat after eating some kinds of nuts. So, my doctor told me to eliminate tree nuts.

One of the difficulties I’ve run into so far with my tree nut allergy (was diagnosed summer 2011) is not knowing how to handle all the words you get on food labels about how this food was processed in the same place that manufactured something with tree nuts or this food was on the same equipment as something with tree nuts. Or this food was introduced to tree nuts once and we can’t confirm nor deny whether there are tree nuts present in this food.**

May favorite one is: “May continue tree nuts or peanuts.” I call that one the lazy CYA*** statement.

Anyways, I like chocolate and what usually comes in chocolate? NUTS! Any good decent chocolate (more expensive than the candy section at the convenience store) will probably not be tree nut free. For example, regular M&Ms? No nuts. However, peanut M&Ms? Might continue almonds! (gods I hate that!)

I picked up a box of dark chocolate truffles to try from a “high end” grocery store we shop at somewhat frequently. Anyone not familiar with chocolate truffles needs to know they are about bite size – 2 bites if you want to savor them and coated with cocoa so they don’t stick. The truffles I grabbed had a warning that said:

I'm so glad I'm not allergic to soy.

“Manufactured in a facility that processes peanuts, tree nuts, wheat, milk.” Ok I’m thinking, been in the same room as nuts – that’s ok. (Being around nuts hasn’t caused any kind of problems for me.)

Anyways, few days later, after dinner, I open the box, grab 2 truffles for a snack/to try, etc. You know, what you do when you want a little bit of chocolate or little bit of dessert.

A few minutes after I finished 1 truffle – I was suddenly extremely stuffy (I had a 24 hour allergy pill that morning) and breathing heavy even though I was sitting quietly in my living room. Used my inhaler, started feeling a little bit better. Took a benadryl. Waiting for the benadryl to kick in seemed like forever.

Sometime that evening I also used my nebulizer. (I have asthma.) Freaked out a little, calmed down. That also involved admitting I was freaking out about the reaction and then making myself calm down. Thankfully I wasn’t alone – in case the drugs didn’t do what I needed them to do. (I do also have an epi-pen per my doctor’s orders.)

Next day I woke up feeling like I had lost a marathon and a food eating contest in the same day. I still needed allergy and asthma medicine and I was horribly tired.

This reaction wasn’t severe. This reaction was not caused by eating food that clearly stated had tree nuts in it. This is why manufacturers should be more clear about food allergy statements.

This post is not meant to advise anyone about anything, it’s meant to share my experience since many people do not understand food allergies. This experience demonstrates a few things that my doctor told me – allergies are dose independent. It does not matter how much you eat, it can effect you. It  also demonstrated that food allergy reactions can come in stages – there is the primary stage that is a few minutes to a few hours from the exposure to the food and the secondary reaction that can be 8 to 12 hours later. I think I experienced both since I didn’t actually start feeling normal/better until over 24 hours after the initial exposure/reaction.

*I’m not allergic to peanuts. Peanuts are also not tree nuts.

**That might be hyperbole.

***Try Google.

Saving money: forgotten circumstances

I’ve got too many blogs on my RSS reader….some of those include saving money/self help financial type blogs. One thing these types of blogs always seem to miss is saving money when you have chronic medical issues. I have allergies and asthma, those include food allergies and intolerances. Luckily, my food allergies are not *that* bad…I can eat wheat, corn, gluten and have no known issues with any vegetable. And I’m not even mentioning hay fever type allergies here! Further, such recommendations usually don’t consider places of extreme temperature. Few other things too… like access.*

Small annoyances.

Allergies/medical

For example, a person who is lactose intolerant (or allergic to fish) probably can’t eat cheap meals like tuna noodle casserole without substitution of some kind – or being sick later. Chemicals like MSG is another issue too… Season packets need to be MSG free, which automatically makes them more expensive.

Then of course there’s pollen. You can’t open your windows in the middle of allergy season if you’re deathly allergic to what’s out there… which is just a few periods of 2-4 weeks for me….but that sure is long enough.

Gluten free foods are usually more expensive. Foods specifically manufactured to be a certain allergen free are usually more expensive too.

Specific to your region

You aren’t going to open the windows in June, July, August, or even September and go without the air conditioner in Texas or other southern states just as you aren’t going to go without heat in December, January, or February (or March or April?) in Minnesota and other northern states. Some areas of the country see more extreme temperatures than others.

Cost of living. Some things are more expensive depending on where you live…. gas…food…transportation…housing…the list goes on. (And this isn’t even counting states like Alaska and Hawaii.) Transportation varies depending on where you are as well. If I lived in a northeast city I might be able to use public transportation to get from my house to point B…but I don’t. I couldn’t use the bus when I lived less than 15 minutes (by car) from campus to get to school.

Utilities and broadband, cable providers vary by city too. A cheaper option might be available, but you might not have access to. This can be as simple as what side of town you live on.

Cultural/Religion

I can’t specifically think of anything but I would bet money there are cultural or religious requirements that would not allow people to do something that might actually save them money.

Health Insurance

Just another thing that varies wildly and really effects your budget. The cost of the insurance as well as the costs after insurance both vary and should be considered. Dropping health insurance to save money isn’t a viable way to save money.

Family

Maybe you have family you can rely on to help out – like you have dinner at your parents every weekend and they pay for it. Maybe your family relies on you and you could save money if they didn’t. Well, you can’t really cut out your family now can you? You could throw daycare in here too. If you have a family member to babysit for little to nothing then you save money on daycare. A large amount of money – which also varies depending on where you live.

Access

So I guess I’m saying one of the problems with giving advice on the Internet is you don’t know what kind of access a person has to resources – necessary resources or just things that are nice to have.  Like, I live under an hour from an ikea, and they have cheap furniture – but not everyone lives that close to an ikea.

 

*This post was actually sitting in draft form on my hard drive since sometime last summer. I finally finished it because I was looking for something to write today.

Food and allergies

I don’t know why I just decided to make this list. Kinda depressing really. I’m planning on getting new allergy testing done… soon.

Things I cannot eat because they will cause pain/distress/problems – either intolerance or allergy.
1. shellfish (I miss crab)
2. salt water fish (and sushi)
3. fresh water fish (I can manage some kinds of fresh water fish – but I have to be up to trying fate)
4. walnuts
5. peanuts
6. MSG
7. lactose (intolerance)
8. fatty/greasy beef (intolerance?)

Migraine triggers – things I completely avoid or eat sparingly
1. wine
2. aged cheese (eat sparingly – aged cheese is low in lactose)
3. nuts
4. MSG
5. processed meats – like regular/cured deli meat (uncured bacon is scrumptious)

Other things that I haven’t proven give me problems or that I avoid to be safe
1. too much garlic
2. canned tuna
3. a lot of ranch dressing (good chance of MSG)
4. Asian buffets
5. strong chemicals – lysol to paint fumes to strong bath soap

Things I’m allergic to – varying levels of severity
1. cats
2. dogs
3. dust and dust mites
4. roaches
5. tobacco
6. grass and tree pollen

I’m not allergic to ragweed! or wasn’t when I was last tested years ago.

Bell curve go boom

**This is in no way a statement regarding vaccinations being bad or . It is me venting about my crazy allergic reaction and recovering from it.**

Sometimes breaking the bell curve is damned annoying.

I received a tetanus booster shot like 3 weeks ago while I was at the doctor to get some help for my re-injured, injured knee. Got a prescription strength NSAID. Had asthmatic reaction. Got over that. Few more days passed. Realized my tetanus booster shot wasn’t normal. Swollen hot arm. The nurse with cold hands was touching my arm like she was holding her hand near a heater. Go back to the doctor. Find out that office gives 10-20 booster shots a day and a few times a year someone comes in with a reaction like mine. Well. Fuck. Glad to know I’m not crazy. But. Fuck.

Got antibiotic and steroid. Then I switched over to taking benadryl to better control the allergic reaction. Fast forward a few days. Slowly but surely I got better. Steroids brought down the swelling almost immediately. Benadryl stopped the itchy nicely but I had to stay on benadryl every 4-5 hours initially. Skin in my arm looked funky. Like a weird sunburn or something. Suffered from steroid intake side effects. Got done with the steroids (5 days total) and suffered from major bad withdrawal symptoms. 2 more days of antibiotics. (yay probiotics!) Turns out the steroids were also messing with my stomach….not really the antibiotics. Got past the withdrawal symptoms. Arm slowly, very slowly, healing, recovering.

Fast forward to this week. There is still an itty bitty knot in my arm from the booster shot. Skin on my arm still looks weird. I’m sleeping 10ish hours a night as often as possible cause my body is just wanting/needing/craving sleep. Thank the gods I’m an unemployed college student and did this in the summer break. In 3 weeks I’ve dealt with:

1. reacting to a tetanus booster shot
2. reacting to a tetanus booster shot – as in whatever I was allergic to
3. reacting to NSAID – asthma
4. reacting to antibiotic
5. reacting to steroid intake
6. reacting to steroid withdrawal
7. lack of sleep from taking antibiotics every 8 hours and the steroids

*grumble*

the Dentist

So.

<insert 5 to 10 minutes of metal scraping on, around your bottom front teeth here> Make sure to include the bone being scraped by metal sound that’s like finger nails on a chalk board. Twinge some.

Hygienist asks you: “Are your gums sensitive there?”

Your only obvious reply: “Well yea, when you’re poking them.”

Duh?

(To her credit, she did then apply that numbing gel stuff that made it much easier to handle.)

____________

I hate the dentist with a passion. Hate. Fear. Get anxious about. Etc.

If you ever meet a dentist with the last name of Savage run away. Even if you’ve seen dentists by other names at the same practice he works for. Run away.

I also hate oral asthma medicine that does things like cause gum inflammation, sinus pain and tooth pain so bad you can’t floss.

Fear of the unknown (and healthcare)

As part of the wonderful bureaucracy that is health care in the United States I’ve signed many many forms recently. I’ve remarked on who to contact in case of emergency and the question of whether or not I’m pregnant. As a patient with no insurance, there is no paperwork, no image of concern, no impression of a trail of paperwork. Now, there is paperwork everywhere. Beyond that, I have doctors referring me to other doctors. It’s almost like you are a full time

The health care system in this county has definitely turned into a nightmare. No, is a nightmare, no turned into. Allergies? Talk to an allergist. Migraines? You have migraines? Was an MRI used in diagnosis? (Because otherwise it doesn’t count!! neener neener!!) You have x, y, and sometimes z? Well, that’s another specialist.

I think the population’s general fear of the unknown has helped breed the multitude of specialists. What happened to people being a whole person, not just parts with different symptoms? What happened to being able to afford to see a doctor without paying a large amount of money into a health insurance company? Who keeps health care providers in business, people or insurance? Who keeps health insurance companies in business, health care providers or people? Who fuels the fears about health concerns/problems? The insurance companies or the doctors?

And I haven’t even mentioned the drug companies yet!

It shouldn’t be called health care anymore. A bureaucrat needs to come up with another term. Yes, it refers to your health, but, not in a general fashion, only in the way that symptoms also refer to your health. And everyone knows one symptom can mean more than one thing. Who the hell knows what two different specialists in the same damn field would think about the same damn problem.

Based upon how much the doctor I saw today was in love with technology and referring to specialists (in love with is not the greatest way to refer to how she acted, but best thing I can come up wtih) then I’m not surprised that the medical community has hate and distrust for homeopathic practioners.

I wonder what would happen to the health care providers if people started to distrust anything they were told. What would happen if people started wanting answers and advise, not drugs to make them feel better. It’s obvious the system is becoming more in love with technology and drugs and specialists than just a few years ago.

New Year Resolutions

Resolutions. Resolutions. Resolutions. Usually I find this silly… this year I think it’s probably a good idea.

I need to be better at motivating myself. I also need to remember there’s no reason to get defensive when I’m asking OP for help with something. (Regardless of what I think his tone of voice is or means.) Be better with my asthma and allergies. If it’s going to trigger my allergies and I know it… then say no. More exercise. Less snacks. More sex! (Hey, can more sex ever be bad?)

More writing. I now have multiple blogs. I like to blog, I like to write. Keep up with it! Learn more about computers in general, html specifically. Mostly, keep up with my own interests even when I’m in school, but don’t go crazy over it. Oh yea. Actually continue to use my brand new camera.

Continue with my own readings in sociology. Continue with readings in photography. Continue with reading in general! Do the research and get my project relating to adult asthma awareness underway. (No car right now has put a crimp in that since I want to hit up an actual LIBRARY.)

Put the cats on a grooming schedule. (We can vacuum every week after all.)

Don’t get too stressed out with school. Remember it’s ok to take a “brain break” but not ok to go until I snap.

Depression should be easier to cope with since this remedy is better than the last…. and I have another doctor’s appointment in less than 2 weeks.

Fragrance free soap

Why is it such a pain in the ass to find fragrance free hand soap? Some nice soap for using after I’ve been preparing raw meat in the kitchen for example. To provide some context… regular Dial hand soap smells really strong to me now. I don’t want to try using it on me.

Don’t even get me started on the “hand soap” in “public” restrooms.