Whirlwind

It’s been a four day week (here in the states where Independence Day was Monday) and it’s been an absolute whirlwind of doctor waiting rooms, exam rooms, traffic lights, grocery and pharmacy. On top of that, trying to stay out of the heat, and deal with new and different types of pain in new and different types of places. Like eye pain and chest pain. Not fun. Extra phone calls have been necessary too.

Prescription change I need to call my immunologist about Monday. Another new doctor I need to make an appointment with. I have to make sure that this is “just” my asthma no longer well controlled. You know, just asthma. My immune system is totally not doing its job right now.

If I was “normal” I’d get drunk tonight but that won’t help anything. I’d feel worse in the morning, so much worse and if I was really unlucky I’d end up with a migraine or something comparable. Three doctor appointments this week, all three ran late. I have three more doctor appointments next week.

Oh yea and we won’t even talk about the prednisone taper. At least it’s only five days. I am in such desperate need for some kind of fun random thing. A small surprise, or an afternoon spent somewhere new or a kitten. A kitten would help!

Symptoms of Hypoglycemia not from diabetes

I have finally remembered to look up symptoms of hypoglycemia. I don’t have diabetes, just hypoglycemia. I didn’t realize that I was experiencing the mild symptoms on a regular basis, multiple times a day, until I saw a dietician. I’m copying and pasting this here to help me remember and to put it someplace I can easily find it again.

Hypoglycemia (Low Blood Sugar) in People Without Diabetes

Definition/Causes
Hypoglycemia, or low blood sugar, is most common in people with diabetes. If you have already been diagnosed with diabetes and need more information about low blood sugar, see Type 1 Diabetes or Type 2 Diabetes.

Your body uses hormones to keep your blood sugar in a normal range. But a long-term health problem that needs treatment can cause blood sugar to drop too low.

People with diabetes often deal with low blood sugar. It’s not as common in people who don’t have diabetes, but it can happen. It could be caused by:

* Medicines such as monoamine oxidase inhibitors (used to treat depression), quinine sulfate (used to treat malaria), and aspirin.
* Drinking too much alcohol.
* Diseases that affect the pancreas, liver, kidneys, adrenal glands, or other organs.
* Metabolism problems that run in families.
* Problems caused by stomach surgery.

Symptoms
The symptoms of hypoglycemia may vary from episode to episode because low blood sugar can be mild, moderate, or severe. Increasingly severe symptoms appear as the blood sugar level falls.

In healthy people, fasting blood sugar levels are usually between 70 and 99 mg/dL.

Mild hypoglycemia

Symptoms of mild low blood sugar usually develop when blood sugar falls below 70 mg/dL and may include:

* Nausea.
* Extreme hunger.
* Feeling nervous or jittery.
* Cold, clammy, wet skin and/or excessive sweating not caused by exercise.
* A rapid heartbeat (tachycardia).
* Numbness or tingling of the fingertips or lips.
* Trembling.

Moderate hypoglycemia

If blood sugar continues to fall, the nervous system will be affected. Symptoms usually develop when the blood sugar falls below 55 mg/dL and may include:

* Mood changes, such as irritability, anxiety, restlessness, or anger.
* Confusion, difficulty in thinking, or inability to concentrate.
* Blurred vision, dizziness, or headache.
* Weakness, lack of energy.
* Poor coordination.
* Difficulty walking or talking, such as staggering or slurred speech.
* Fatigue, lethargy, or drowsiness.

Severe hypoglycemia

The symptoms of severe low blood sugar develop when blood sugar falls below 35-40 mg/dL and may include:

* Seizures or convulsions.
* Loss of consciousness, coma.
* Low body temperature (hypothermia).

Prolonged severe hypoglycemia can cause irreversible brain damage and heart problems, especially in people who already have coronary artery disease. If emergency medical treatment is not provided, severe hypoglycemia can be fatal.

Some medicines may mask symptoms of low blood sugar, including beta-blockers, which are often used to treat heart conditions and high blood pressure.
Different people may develop symptoms of mild, moderate, or severe hypoglycemia at varying blood sugar levels. Although the blood sugar levels listed above are typical, they may not apply to everyone. If your blood sugar drops suddenly, you may develop symptoms even if your level is in the normal range.

Tips on how to go to the Doctor

As I’ve spent more and more of my time going to different doctors I’ve realized how much people don’t know about how doctor’s offices work. Also, different doctors or practices obviously have different procedures. As of the last few months, maybe even the last year, I now try to do certain things when going to the doctor. It’s probably why I’ve decided to also refer to myself as a professional patient.

I find lists are easier to read on the Internet. For the most part these are in no particular order.

1. Give yourself enough time to arrive and have time to park, depending on the parking situation. Especially give yourself extra time if the location of the appointment is unfamiliar.
Example: Some of my doctors are in a hospital office building with valet. The parking is so ridiculous valet is the only option. I try to give myself ten minutes because I don’t how how busy valet is.

2. Try to get there at least three minutes before your appointment time. Five to ten is better. It takes a few minutes for the person at the front desk who checks you in to let the person who will come get you that you are here. If there are four appointments before yours and those four people arrive in the waiting room at their appointment time and it takes five minutes for the nurse to come get them, you might wait an extra 15-20 minutes because of that alone. This leads into number three.
There are other reasons too, like maybe you have to fill out paperwork. New patient paperwork obviously takes more time.

3. Doctors can only see patients as fast as their nurses/assistants “check them in.” When you go back to the exam room the “nurse” is going do any number of things: check your vitals, gather information about your visit or changes since your last visit, and confirm there have been no changes in your medicine. This takes time. It will probably also take time if they are new at their job/position. This leads me to number four.

4. Tell (all of) your doctor(s) about all of your medicines. It doesn’t matter if they are over the counter or something you don’t take every day. This is very important. If you don’t tell your doctor all of your medicines, vitamins, supplements, and other over the counter “things” you take, how can you expect your doctor to help you? Basically this can be summarized into two words which leads me to number five. If you can’t remember everything, it’s okay to make your own list of your medicines, supplements, and anything you take as needed. You can provide this list to each doctor. If that list is also organized and everything is spelled correctly, your doctor will really appreciate it.

5. Be honest with your doctor, nurse practitioner, physician’s assistant, medical professional. If you aren’t honest then they aren’t working with all the information. What’s that saying about assumptions making an ass out of everyone? Honesty leads me into number six.

6. Remember that everyone’s day is always easier and more pleasant when everyone you meet is respectful and courteous. The people working at the doctor’s office do realize that a lot of people are stressed or not feeling well when they arrive. Sometimes the people at the front desk are rude. It happens. There’s only so much you can do about it. However, if your doctor is rude or disrespectful to you, try to find another doctor. Your doctor should respect you and listen to you. This is how you can build a relationship with your doctor and learn to trust the advice and “orders” your doctor provides you.

7. Most doctors will call you to confirm your appointment. If you don’t get a confirmation phone call, email, or text message, you might want to call and confirm your appointment. Also, if your doctor wants you to follow-up then there is a reason.

8. Don’t put off scheduling any appointments, that way you have more choices for when you’d like the appointment. New patient appointments are different from regular appointments and take extra time. Make sure to not procrastinate scheduling with a new doctor because you may even have to wait for months before you see the doctor. If your doctor is often running late (for whatever reason) it might help to schedule appointments earlier in the day.

9. Most doctor offices prefer that you call and let them know you are running late. However, past a certain time frame, they might request you reschedule. Some doctors will make you pay. In my experience, most doctor offices don’t mind if you are 5-10 minutes late, especially if you call ahead and are respectful and courteous. What to do when the doctor is late varies.
Example: One of my doctors has a sign in the waiting room requesting that you talk to the receptionist if you are waiting for more than 20 minutes. However, my neurologist runs late for varying amounts of time on different days. I realized, eventually, that she runs late not because she’s disorganized but because she doesn’t rush her patients and sometimes there are a lot of questions!

10. Finally, never be afraid to “fire” a doctor because that doctor is not listening to you. Just be warned, this is not the same thing as you not listening to your doctor because they are saying things you don’t want to hear.

If you think I missed something, feel free to say so.

Life is intense: Another medical post

Earlier today I was hit with a realization, a moment of clarity if you will. I realized how much I have gone through in — less than a month — and actually had to sit down under the weight of it all. And that was only in terms of the doctor appointments, procedures, and tests I’ve had to deal with. It didn’t include fun things like brunch with a bunch of good friends or the wonders of FaceTime.

All within the last few weeks I’ve gone through multiple GI tests including an endoscopy, a multiple day “study” to check my stomach pH and see if I really am having acid reflux, and a gastric emptying study. All of these provided useful but slightly conflicting information. I have collected yet another diagnosis. I don’t want more diagnoses but it seems, lately anyways, that answers bring diagnoses.

Because of my (new) gastroparesis (a word that my browser does not recognize), I have to adjust my diet again. I have to relearn how to eat. In some ways I started to feel better rather quickly once I started adjusting my diet. However, there’s a pretty steep learning curve to relearning how to eat at the age of 34. There are now more foods I am supposed to avoid. Before this I had a very restricted diet because of my allergies and intolerances. Now, I can’t think about the restrictions or I want to scream.

But that’s not all. I also went through an EMG “of my upper extremities” which just means my arms had electrodes attached to muscle groups and then needles poked in those muscle groups. Thankfully my doctor who performed this test is very gentle. Then yesterday I spent five hours with a psychologist going through neuropsychology testing. Five hours. You cannot even imagine the level of brain dead I was by the time I got home. The testing was mentally exhausting and also depressing when I stopped to think about all the times I struggled or ran into a (metaphorical) brick wall. Then there was also the back and forth to my GP doctor’s office for an infection. Because when you’re sick all the time, getting “normal sick” is even more difficult. And thankfully the allergic reaction to that antibiotic was not anaphylaxis that landed me in the ER. (Been there, done that, already have the tshirt.)

Yesterday, I decided any time I have to fill in the “occupation” blank on a doctor’s forms I’m going to say “professional patient.” It’s exhausting keeping up with all my doctors, appointments, and keeping my own medical records up to date. I need to find a way to make this a job where I can also provide doctors with feedback of their office and procedures.

I’m scared that I’m going to still load more diagnoses on top of everything else but I’m trying very hard to stop myself from falling into that deadly cycle of thinking. I cannot get stuck thinking like that. Still though, I wonder what a “normal healthy” person would do if suddenly faced with the amount of doctors and appointments that I’ve been dealing with. Every appointment meant sitting (or standing or pacing) in a waiting room and having little control over a number of events. You think it’s bad to sit waiting for a doctor for 15 minutes? Fifteen minutes is actually good! You think it’s annoying to have to go to the doctor? Try having two different five hour tests in a two week time period.

Sometimes I wonder how I deal with it all. I know my friends help so very much. My cats and my husband help more than I can really fathom…. but I also spend a great deal of time alone. Anxiety and depression continue to be very real and scary problems for me. I have no idea when “things” will “calm down” again. At this point in 2015 I’m happy I haven’t been to the ER (yet) this year. I really hope I can find some kind of normal in the next few months. Normal is having nothing out of the ordinary (health wise) happening in at least 2-3 months. That means nothing that I don’t already have a plan for coping with.

I’ve finally stopped asking “Why me?” but now I find myself asking “Don’t I have enough already?” It’s intense and overwhelming and the average person probably cannot even begin to imagine let alone actually understand what it’s like to live as someone with chronic disease and chronic pain.

Dealing with Allergies: A list

1. If you’re allergic to a food or substance, then any amount of that food or substance will cause allergy symptoms. Also, anaphylaxis is more than just your face swelling up and or your throat closing up. (TV shows are very bad at presenting food allergies.)

2. It’s possible to have an allergic reaction to food but not be allergic to that food. For example, if you’re (very) allergic to ragweed, you might not be able to eat bananas. Lactose intolerance is not an allergy.

3. Antihistamines work better if you take them before your symptoms start. Some allergy meds might also need a few days before you really feel the full affect.

4. Some supplements or vitamins might help alleviate your allergy symptoms but remember that supplements are not as well regulated as medicine. Vitamin B and vitamin C are some supplements that might help.

5. Antihistamines are safe and there are multiple kinds. If one kind of (OTC) antihistamine doesn’t work for you, try another. If OTC antihistamines don’t help, then see your doctor. If antihistamines make you sleepy, try taking one at bedtime.

6. Your house or apartment might be making your allergies worse. Curtains, carpets, pillows, and beds are all places that can accumulate dust. Even something as simple as changing bed sheets regularly and vacuuming regularly can help ease symptoms. If you think you are allergic to dust, try taking your antihistamine at bedtime.

7. Zantac and other similar medicines are antihistamines. (Prilosec and Nexium are not.)

8. Allergy doctors and immunologist doctors can help you with allergy symptoms. Expect to answer a lot of questions and possibly go through a skin test. The skin test isn’t scary at all. Technology has improved and it’s quick and handled in the doctor’s office.

9. When taking antihistamines remember to stay sufficiently hydrated, especially if you are using decongestants.

10. There are multiple kinds of OTC allergy eye drops. Try to find one that doesn’t not advertise “getting the red out.” Also, see if lubricating eye drops alleviate any of your symptoms.

11. Saving the most important thing for last. If you have ever had trouble breathing after eating a specific food you should go to your doctor. You might need to carry epi-pens. Food allergies are serious business and what you’ve “learned” about food allergies on TV is probably very wrong. Side note: Step 1: Use Epi-pen. Step 2: Go to the ER. Step 3: Don’t die.

Note: This is not medical advice. This includes information that I have learned through years of dealing with allergies and treating my symptoms. I have food allergies, food sensitivities, problems with chemicals, pollen allergies, and sensitivities to other environmental triggers. I am the type of person who carries antihistamines and epi-pens just in case.

Why I stopped shaving my legs

There’s a few obvious reasons and some would say I’m lucky. First, I don’t do anything like go swimming (or do porn?) that would serve as a functional reason to shave* my legs. I also don’t have thick dark hair. In general, a woman shaves her legs because she likes it, because she thinks she’s supposed to because that’s the way it is, and/or because her significant other/partner/spouse likes it.** That means when a woman doesn’t shave her legs she’s supposed to hide her legs. Women aren’t supposed to have hairy legs…. except everyone has body hair.

For a woman to shave her legs requires time, energy, ability, and money. It takes time and energy to shave your legs and it takes a specific amount of “product”… and special attention then is needed for caring for shaved skin. Yes, men shave their faces – except when considering in square inches, men have a lot less to deal with! Also, women’s products – like disposable razors – are often more expensive than men’s despite the product being virtually or completely identical. (The bathroom mirror also often has better light than the shower.)

Therefore the first main reason I stopped shaving my legs was because it means I get to spend that time, energy, and money on something else. It also means that I have less problems with dry and sensitive skin. I also don’t have to remember to shave my legs or decide when to shave my legs if I’m too stiff, tired, or in too much pain.

The other half of why I stopped was that I realized there no reason I needed to actually shave my legs – since I don’t mind my hairy legs. One day, perhaps reading Twitter, I realized that the western/American standard of beauty is based around the comfort of the viewer. There’s no reason why I should shave my legs just to make some stranger in the grocery store more comfortable when he (or she) looks at me. I’d rather be more comfortable not wearing long pants to hide my legs in the summer (Texas) heat. I don’t have itchy dry skin on my legs, or even a rash. It’s also provided me more freedom because it’s one less thing to do, remember, plan for, etc.

*Or use some other type of temporary hair removal product that requires regular maintenance and attention.

**Western culture, American culture, mainstream American culture is all I’m speaking of here.

Looking forward and being sick

Or, why I’ve decided to apply for disability.

My health has improved in the past few months, since it started getting worse(r) at the beginning of the year. Much of my week to week, or month to month, life often seems to be taking two steps forward and one step back. (Or one step forward and two steps back.) It’s depressing and frustrating.

In the last month or so I reached an important milestone. I choose to think of it as a milestone. I stopped looking at how I feel compared to how I felt. (I need to make sure my neurologist understand this.) Instead, I’ve started (trying) to look forward. How do I feel compared to how I should feel to be able to do things like work full time, write a book, work in the yard again, or volunteer again.

Ignoring, for a moment, the unknown aspect of all my multiple health problems, I think it will be years before I can attempt many things in life that I used to take for granted — without much planning, preparation, and expectations of doing nothing but resting before or after. The unknown aspect of my health problems means that I don’t know if I’ll be staying in bed – or going back to bed – tomorrow until tomorrow.

The goal that I put first, after taking care of myself, is being able to write a book AND publish it. This is something I can do on my own schedule, around doctor appointments, migraines, and naps. This is not something that pays bills. If I was to go back to work full time, I’d lose access to doctors because I wouldn’t have the time to get to appointments. I’d also lose access to hobbies and increase my stress. All of these things would negatively affect my health by causing more issues with pain and fatigue – among other things. More pain means (more) narcotics. It would also mean I’m more likely to get sick. Getting sick means more doctor appointments and more medicine.

Regardless of what my long term goals happen to be, I now understand that I have to think in terms of years. Half a year, a whole year, two years, etc. Getting sick happened over years, not weeks or months. It’s going to take longer than that to improve my endurance and find my new normal. I’ll probably never be like how I was in graduate school. (That was only 3-4 years ago!)

This is not something that pays student loans or doctors or medical bills that are in collections. It all sounds scary, but at least I can look forward and think about the future now without panicking (much).

Motions

This probably applies to lots of things so that’s why I’m throwing it up in a blog post. Right now, it applies to my life as a full time patient living along side multiple chronic diseases. Side note: People with chronic health diseases often have anxiety and or depression.

 

Going through the motions

The alarm starts playing music and your eyes crack open.
Crawl out of bed in the morning.
Shuffle to the bathroom.
Stumble to the kitchen.
Collect the foods necessary to build a breakfast.
See the husband off to work.
Now you’re alone with the cats.
Eat breakfast not because you’re hungry,
but because you need to take your meds.
Check your calendar. When is the next doctor appointment?
Nothing today. Breathe a sigh of relief.
Shuffle back to the bathroom –
take the rest of your meds.
Is it a bad day?
Then sit on the couch wrapped in a blanket, staring at Netflix.
Is it a better day? Have your meds kicked in yet?
Then find a book, or knit a sock.
Around noon, gather foods again.
Eat again. Maybe you’re hungry this time.
Check Twitter. Wonder how the little people inside your phone are fairing.
After lunch?
Maybe you can wash dishes or collect laundry from the bedroom closet.
Maybe you can care for the cats.
Maybe you can knit some more.
But maybe you’ll need to nap instead.
Check the freezer. Make plans for dinner.
Wonder where the day has gone. Check Twitter again.
Have a snack. Chocolate sounds good.
Don’t forget any meds.
Before you know it, the day is mostly gone. Your husband is finally home.
Dinner time.
Your husband cooks. Some days dinner is the best thing.
After dinner?
If it’s a better day maybe there will be some game playing, or some conversation.
If it’s a bad day, there won’t be much of anything. You’d be sad about the bad days if you could think through the fog.
Then it’s time for more meds.
Then it’s time for bedtime, and more meds.
Finally, you can go back to bed again.
When will it be easier? Maybe tomorrow it will be easier. Maybe tomorrow is finally the day.

There’s no way to know.

Tomorrow you go through the motions all over again.

Foods I cannot eat

I’ve decided to make a list of the foods I cannot eat (and things I cannot drink). If it’s here assume I cannot eat even a tiny bit of it.

I have to know every single ingredient of any food I put in my mouth. If I happen to just try a bite of something, I’m risking anything from being sick to my stomach for a few hours to a few days, to not being able to breathe. Not being able to breathe means risking death. Many of the foods listed here are foods I’ve had serious reactions to. If I’ve not had serious reactions to the foods, then eliminating the foods have greatly improved my quality of life.

This is also a work in progress. I’m beginning to feel like diet is not enough to control my symptoms for a variety of reasons. I’m waiting on the LP procedure to determine the MS diagnosis before I go back to my immunologist. Anyways, the list.

  • fish
  • shellfish
  • tree nuts
  • soy
  • artificial colors – especially red40
  • gluten
  • most dairy – I cannot eat aged cheese of any kind – even cheddar
  • cherries
  • blueberries
  • raspberries
  • strawberries
  • vinegar and fermented items – yes, this means basically no condiments
  • tomatoes
  • spinach
  • pumpkin
  • spices – cinnamon especially, but also allspice, cloves, nutmeg, and ginger, also curry and chili powder
  • MSG
  • foods that contain high levels of nitrites – If I eat regular cured bacon, technically I’m risking a migraine.
  • alcohol – I drink some amounts of gluten free beer, apple cider, and mead. Probably about 2 drinks a month? Technically I’m supposed to avoid it completely.
  • preservatives – especially those based of benzoates, BHT is another one. example: I cannot eat Rice Krispies because of the preservative in them.
  • grapes/raisins
  • dates
  • eggplant
  • red beans
  • tea
  • caffeine
  • bananas – recently eating bananas has given me migraines – I’m wondering if it’s because my latex sensitivity has gotten more extreme.
  • sulfites – also used as a basis for preservatives
  • corn – I’ve developed a sensitivity to corn but so far it’s based on the source and how much I eat. That’s how I know it’s a sensitivity. Popcorn at the movie theatre means a stomach ache for two days. Snack bag size of fritos from the machine? Stomach ache for at least a day. Mixed veggies with corn for dinner? No problem I’ve noticed so far.
  • chocolate
  • oat
  • flax

There are a few things that I can eat every now and again if I don’t eat too much. Avocado is one of those. I still eat chocolate but I only get it from one or two sources which I know are allergen free and have very few ingredients. I eat chocolate bars with three ingredients in them.

There are other things I need to be careful with. A big one is leftovers. I cannot eat meat that has been leftover more than 48 hours or I’ll likely end up with a stomach ache.

If you’ve stuck with me so far…. I challenge you. Pick up your bottle of juice, soda, tea, whatever and read the ingredients. If there’s something you don’t understand? Google it. I’ll bet you go get a glass of water afterwards.

This is why I’m actually hoping that the MS diagnosis comes through as a real thing, because then I can go on immune suppressing drugs and maybe, just maybe, my body will calm down and stop treating so many different kinds of food as poison.

If you want more information, including information about histamine intolerance, check this out.

Why I like Yoga

I’ve started learning about/doing yoga with the help of some DVDs and programs geared towards beginners. Yesterday I worked through the majority of a program currently free if you have Amazon Prime and access to the videos section. I liked this program because it actually named the poses you would be doing and had a specific focus on breathing. I find that I really enjoy yoga for a variety of reasons, but at the same time, it’s very hard to find a program geared toward a true beginner that knows little about yoga. You cannot learn yoga from a book – you need to be able to see the poses in person.

The biggest reason I like yoga is that you use your body and only do what your body is capable of doing. That’s also why I started learning yoga at home with a DVD in my living room instead of finding a class. No pressure! This also makes it easy to set goals. If the first time you can barely hold the pose, then each time after that you try to hold the pose a little longer – or hold the pose at all!

The thing that amazes me about yoga is how it’s different from the general culture of “no pain no gain” of exercise. Pain is bad. ALWAYS. If there is pain, your body will be recovering from something for some amount of time. This obviously varies by person. I do yoga on a mat, in my living room. I don’t run. I don’t lift weights. I don’t do anything that actually feels strenuous. Holding poses is hard, but doesn’t feel strenuous. Yet, as a beginner anyways, I’m definitely using energy, sweating, and burning calories, easily.

Finally, the reason I’m going to continue yoga is because it actually focuses on breathing and so there’s an aspect of relaxation and de-stressing included in my exercise without having to exercise hard and end up out of breath – which I don’t need with my asthma. Even learning about yoga through doing yoga has been enjoyable. I know at some point I will likely seek out a class – but I’m not ready yet.

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.

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.