Project 365 (Day 8): Water Therapy

Since the beginning of December, I’ve been going twice a week to physical therapy in this warm water pool to treat my fibromyalgia. This week I’m switching to once a week on land and once a week in the water. I’m going to miss the comfort of not sweating during my aerobic workout.

However, an hour in warm water always makes me a little “rushed” afterward…just saying.

Edited using pxn8.com - The online image editor.

Tags: project365, photoaday, oneaday, photo blogging, pxn8, physical therapy, water therapy, fibromyalgia

Project 365 (Day 3): Good Morning, Starshine

I start my morning with all but two of those bottles on the bottom two rows, thanks to all my medical problems. One of these, two of those.

Don’t think the other two bottles get ignored. Those are the night meds.

The top shelf has the pain meds for those days when the migraines and fibromyalgia is unignorable. Though, technically, I don’t take the aleeve or ibuprophen anymore. They’re just there for company now.

I vaguely remember when I used to just take a vitamin C every morning.

Tags: medications, photo blogging, project365, fibromyalgia, wellness, photoaday

Thursday Thirteen Things I Wonder About (#19)

My mind works in strange and mysterious ways…

Thirteen Things about N. Mallory

1. How often do other people change out the underwear in their underwear drawer? I mean, so they schedule a regular amount of time? Twice a year maybe to go through and throw out all the ratty old underwear they wouldn’t wear on vacation or on a date or in front of their cats and replace them?
2. Speaking of underwear, am I the only one who’s ever bought new underwear just so I didn’t have to wash clothes? Or whole new outfits even? Or a couple of days-worth of clothes?
3. What do other people think about during their commute to work? Do they just space out and not remember how they got to work? Do they think about the AIDs issue in Africa, last night’s Daily Show, what they’re going to make for dinner? Am I the only one who has whole imaginary conversations and arguments with myself that I might have with other people that just piss me off further when I’m already pissed off or help convince me more that I’m right about something?…What?
4. Do other people worry that they might look up and find someone staring in their window at them, especially at night? Every night? Even on the second story? Or driving in their car? Especially when looking in the rear view mirror?
5. Why can’t someone invent a spray that discourages my puppy from poo-pooing on my rug? They make stuff to clean it up. They make stuff to “neutralize” the smell. Can’t they make something that makes him sniff that spot and think “naughty!”?
6. Why can’t all my pets learn to use the toilet like me? Is it really that difficult? I mean, they’re always watching me, studying me when I use it. Surely by now they’ve figured it out.
7. Why do people think South Park is funny? Seriously. I just don’t get it.
8. Why don’t Target or WAL-Mart carry white floating shelves? Do people really only decorate in dark colors anymore? Don’t the people who order stock for them watch HGtv or TLC at all?
9. Was my old apartment building filled with mold like my crazy old neighbor claimed and was it making me sick? I have to say that I’ve had a reduction in headaches since I moved into the house. Though before I moved into the apartment, I suffered from chronic migraines for 20+ years. However, the fibromyalgia did become a problem while I was in the apartment and it’s been better too. Granted, I’ve been eating my strict pseudo-vegetarian diet and doing aquatic physical therapy. It’s hard to tell. But the mildew problem on my furniture and in my kitchen is gone now that I’m in the house. (The allergist said I wasn’t allergic.)
10. If my mom isn’t coming for my gall bladder surgery, who is going to drive me to and from and take care of me and is it wrong to be annoyed at my grandmother for taking up my mother’s time? My grandmother isn’t actually physically ill, but she is bipolar. She has to be watched because she won’t take her meds or eat like she should because she’s decided she doesn’t want to and she didn’t like the nursing home she was in. She demanded that my parents take her with them from Ohio to New Mexico for a visit after Thanksgiving and she shows no signs of wanting to go home. My dad shows no signs of wanting to take care of his own mother so it falls on my mom. So, now that I have surgery scheduled in February, I don’t have my mommy to take care of me and I’m a little disappointed. Does that sound too selfish?
11. Has TNT been showing a 3rd season of The Closer and I’ve missed it? I think I missed this season of Monk too. They don’t seem to be showing them regularly. When will there be a new season of Eureka? There are simply too many shows I like now. It’s too much to keep up with and they’re all on at odd times and their seasons are all weird and even the DVR is getting confused.
12. Has anyone else noticed that Amazon’s Prime shipping is not worth the price anymore? Very few things are covered as “free shipping” and very few things are included in their “expedited” 2-day shipping either. I almost always am paying added shipping costs even on some books and for standard shipping, some things aren’t shipping for weeks, even two of the books I ordered (that I don’t have time to read). Since I usually buy $100-worth of stuff at a time, I don’t understand why I never qualify for free anything. Why am I paying for this extra service?
13. Do people only come here to read the Thursday Thirteen? My uncle told me that one of those news channels said that most blogs have only one reader. Am I posting to myself the rest of the week?

Tags: Thursday Thirteen, blog meme, meme, bloghopping, WAL-Mart, Target, the puppy, South Park, underwear, The Closer, Monk, Eureka, T.V., Amazon.com, mold, mildew, fibromyalgia, migraines

Out Of Sorts? Check Your List!

I like today’s Fibromyalgia Tip of the Day : Making Lists:

Make a list of things that you enjoy doing. Days when you are out of sorts and bored, this list can come in handy. It sounds silly to think that you might forget what you enjoy, but bad days can be heavy with “fibrofog” and so reminder lists are always helpful.

I think everyone, not just fibro sufferers could stand to put this tip into use.  When you’re out of sorts and having a bad day, even when you’re healthy, it’s easy to forget the good stuff.

I’d take this tip a step further and do something on the list to cheer yourself up.

Tags: fibromyalgia, depression

The Great Tofurky Experiment

So, the nutritionists say the poultry is a bad thing for me because it’s pro-inflammatory. They told me to eat more soy and seafood. Seafood didn’t seem right for Christmas dinner, but there’s something in the health food stores called “Tofurky.” It’s kind of fun to say but I was a little wary of trying it. Feaux vegetarian meats have been a kind of scary thing, though they’ve been getting better the last 15 years as “vegetarianism” has hit the modern grocery store instead of just in hidden health food stores.

Anyway, so this Christmas, I decided to go for the whole Tofurky affair. I found a whole dinner at Wild Oats. According to the box:

A Delicious Vegetarian Feast

Feast Includes a Tender, Juicy Stuffed Tofu Roast, 8 Delicious Cranberry-Apple, Potato Dumplings, Rich Tofurky “Giblet” & Mushroom Gravy, and Our Signature Tofurky Jurky Wishstix

More

Tags: Tofurky, vegetarian, Christmas, dinner, nutrition, fibromyalgia, cooking

Unrealistic Expectations

One of the big things I’ve had to try to cope with in the last year in coming to terms with whether or not I had fibromyalgia was the fact that I simply wasn’t capable of doing everything I wanted to do. I felt like I was “talking big” and not getting anything done and I’ve felt as though people, some people in particular (N2 for one and maybe even PW) were judging me. I’ve wondered how many people have considered me just plain lazy. My father, I think. He’s even commented that he thinks I just plain need to get up and move more.

So I was kind of surprised to find this tidbit:

Fibro victims tend to be over-achievers. We have had unrealistic expectations of ourselves all of our lives. It’s time to get real. Set some new goals. They don’t need to be large- just realistic. Instead of cleaning the garden, weed one flower bed. You don’t have to be perfect. Ignore anyone who tries to make you feel guilty. You can only do what you can do. [“Pace Yourself” (Fibromyalgia Tip of the Day)]

Thinking about it, I always have a huge to-do list and I’m almost always beating myself up mentally because I can’t seem to ever put a dent in it, especially a dent the size I think I should.

It’s just something to consider.

Tags: fibromyalgia, goal setting

Trying Something Alternative

I spent Monday focusing on my stomach.

Well, sort of.

Monday morning, I met with two GPs, who specialize in alternative medicine, specifically nutrition.  Rather, I was referred to them to get counsellings on what changes to make to my nutritional diet to decrease inflammation in my body since I can no longer take anti-inflammatory drugs due to my kidney disease.  I guess I kind of expected to get a list of foods to avoid and a list of foods to eat and a sample diet and have that be it, but that’s not really how it went.

First, I’m being referred to an acupuncturist for the pain.  I’m going to try it out.  I’m not all that excited about the needles thing, but at this point, I’m willing to try it.  They got me after a week of moving and being slave-driven by my parents who don’t believe in taking rest breaks, so I was particularly tender and in no mood to argue.

As for nutrition:

• Gradually decrease the caffeine in your diet.  For some reason, they think I’m an addict.  Who didn’t see that coming?  They said not to do it cold turkey though…apparently I’m not as young as I once was.
• I have to do half my morning coffee as decaf.  Bah!  That’s just wrong!  A crime against nature.
• I need to start cutting my Diet Pepsi with Diet Rite (which is not caffeinated).  Another crime.
• Take out foods with aspartame.  Substitute with non-aspartame products.
• Again with the Diet Rite.  Though Pepsi One is made with Splenda.
• I need to find a yogurt I like that doesn’t sweeten with aspartame.  I loved Blue Bunny in the South but haven’t been able to find it here.  I’ll be making my own again once I get settled in my house, so it’s just for a short time.
• Use Olive and Canola Oil.  (I already do that.  Vegetable oil is too heavy.)
• Decrease how often you are eating out down to 1-2 times per week to keep dinners healthy.  They got me there.  I had gotten to the point where I was eating out pretty much every night and you can’t control what other people put in your food.  It’s a good thing I love cooking.
• Add Ginger and Tumeric to foods.  Apparently these have anti-inflammatory properties but they take a few weeks to build up in your system.  They said to just toss a little into my soup or whatever I’m having for lunch.
• Substitute Soy and Seafood for red meat and poultry.  Apparently red meat and poultry have pro-inflammatory properties.  I already wasn’t eating much red meat.  The poultry will be harder to give up.  I find it a little odd that I already had been unconsciously making this move toward semi-vegetarianism.  I’d been naturally making the choice to use Soy substitutes of meat for about half a year on my own, not out of any pro-animal or anti-meat industry ideology but just because I felt it was better for “me” personally.  Who knew?
• Increase fruits and vegetables.  The goal in anti-inflammatory diets is 6-8 servings a day.  Damn, 5 servings a day was hard enough.  Well, I just have to work at it.  V-8 here I come.
• Try adding small amounts of nuts or seeds (especially almonds) for a snack.  About a handful a day would be good.  Almonds have particularly good anti-inflammatory properties.

As for exercise, they checked on my water physical therapy referral which is still in the queue and suggested I start wearing my pedometer again and start increasing my steps.  Like I’m going to be able to find my pedometer in the chaos.  The idea is that I should take short walk breaks at work.  Do these doctors have time to take short walk breaks at their job?
They wanted to suggest some vitamin supplements but decided to hold off until my next appointment so they could do some research on how the supplements my affect my IgAN.  I like doctors that research how things will affect your illnesses.

Tags: Wellness, alternative medicine, nutrition, acupuncture, IgAN, fibromyalgia, anti-inflammatory diet

Trying Alternative Medicine

Well, I saw my GP on Monday.  You know, to follow up on all of those new diagnoses and to get my ambien dosage increased per the Rhuemy and get the water PT referral, etc.  She and I discussed my concern with not being able to take anti-inflammatory meds anymore what with the whole kidney disease thing and especially since I was still in pain with the whole fibromyalgia thing.  In particular, my left elbow, right knee and lower back have been really bothersome and are only getting worse with the packing and the move.

Well, of course she asked me if I was taking my Tylenol twice a day.  No.  Of course not.  I’m wary of taking too much Tylenol because that could lead to liver damage.  *sigh*  Well, she scolded me, of course.  She told me to get back on a regimen of  2 extra-strength Tylenol twice a day (when I get up and in the afternoon), but no more than that.  Of course, I pointed out that the Tylenol doesn’t do a whole lot because I’m not treating the inflammation too.

I mean, I’m trying all sorts of things here.  I’ve been trying cold packs and heating pads.  I’ve tried wearing a brace on my left elbow.  The pain doesn’t go away while I’m sleeping.  Neither she nor I could find a tender area where you touch around the elbow and it’s particularly more painful. It seems to be inside the joint itself and it just aches.
I said that at this point I was willing to try anything.  I even mentioned that I’d read a blurb in one of my health magazines that some journal had done a study that found that cherries were a natural anti-inflammatory.  I told my GP that my mother laughed at me when I said I was going to buy some and start eating a bunch every day.  (The study had the women eat 45 every day.)  I’d drink juice if I could find it, but I’ve not been able to find pure cherry juice, which I hear is really bitter.

So, apparently there’s an alternative medicine program I can get into, a nutritionist I can see who’ll put together an anti-inflammatory diet for me — you know, tell me what foods to avoid, which ones I should be eating to help reduce the pain.  So she put in a referral for me.  So, I’m going to try it.  My mother thinks it’s crazy.

Tags: alternative medicine, anti-inflammatory diet, wellness, fibromyalgia

Where Do I Buy A Bathing Suit This Time Of Year?

No, seriously.

So, the Rheumy wants me into one of those water aerobic exercise classes and I got the GP to get me a referral for a water PT thing, but it’s not at my hospital so probably my insurance won’t pay for the whole thing.  The catch is that the water PT has to be done in a heated pool and there are only so many of those around.

The real catch is that I don’t own a bathing suit and I swore I wouldn’t buy another after moving up here to Maine.  Now it’s mid- to late November.  Where the heck am I going to get a decent bathing suit that doesn’t make me look like a complete cow made of cottage cheese?

Tags: bathing suit, fibromyalgia

2 Specialists Down, 1…or 2 To Go

It’s official. It’s a relief to know that I have two diagnoses and two treatment plans now.

The kidney biopsy results apparently led to both diagnoses.

IgA Nephropathy

It’s an autoimmune kidney disease, as I said. The Nephrologist said the prognosis is very good. We have caught it very early — though probably I had it 4 years ago when I saw that Nephrologist who didn’t really run any tests and just dismissed me so I could have caught it even sooner. My kidney functions are still excellent and don’t appear to be damaged yet. She is changing my blood pressure medication to one that will treat both my blood pressure and the IgAN. Unfortunately, this will have to be monitored for the rest of my life at the very least annually if not quarterly to watch for deterioration of my kidneys. Worse case senarios are total renal failure and kidney transplants.

Fibromyalgia

The Rheumatologist is now convinced that my consistantly high SED rate is the result of the IgAN as he’s eliminated everything else it could be in his arsenal and the kidney biopsy proved it’s not vasculitis. He’s given me the official diagnosis of Fibromyalgia and is requesting that my GP increase my sleep med dosage (b/c she prescribed it) and is prescribing water exercise therapy, which I now need to see where my insurance will cover sending me to. Again, I have to go back in 3 months. Unfortunately because of my kidneys, I cannot take any alleve, advil, or asprin to help with the soreness in my muscles or the pain in my hands.

The frustrating thing is that for the most part, there’s not a lot to change from what I’m doing. Just make sure I get more and better sleep at night and get some exercise, preferably water-based since regular exercise aggrevates the muscle pain. Weight loss will also help but without exercise I possibly can’t lose any more without starving myself.

Next Up

I’m seeing a GI specialist next week finally who I’m supposed to discuss the lack of Gallbladder surgery and possible IBS and acid reflux issues. Good timing as the Previcid seems to be no longer working on the acid reflux.

And the GP wanted to wait until after the kidney biopsy to send me to some sort of pulmonary work-up regarding that persistant cough I’m still having, though not as bad or frequent. I’ve got to try to see her next week about a flu shot too. Oy.

So, there’s good news and lots of moving forward finally! Yay!

Tags: IgAN, fibromyalgia, GI specialist, kidney biopsy, SED rate, rheumatologist, nephrologist, blood pressure, wellness

More Tests, More Specialists

So, I saw my GP yesterday afternoon. We went over the concerns of the Rheumy with the blood in the urine; plus I got a copy of the results of some of my lab work that the Rheumy did at his office. I don’t understand much of it, but I have a copy of it now. (By the way, it says I have 16 of 18 of the trigger points for myalgia but my alarming Sed rate is what keeps me from the fibromyalgia diagnosis…that’s what’s written on the paperwork.)

Anyway, one of the things that the Rheumy didn’t test for is IgA Nephropathy, an autoimmune kidney disorder. So, I have to do this 24 hour urinalisis for the Rheumy (re: pee in bottle) and at the end they are taking some blood to do a creatin protein (sp?) work-up anyway so they’re now going to take even more blood and do a work-up for IgA Nephropathy too. Depending on the result of that work-up, if it comes back positive, I’ll go see a Nephrologist, and if it comes back negative, I’ll go see a Urologist. Meaning, either there’s something wrong with my kidneys or my bladder.

Plus, that surgeon has never gotten around to sending anything back to the GP about refering me to a GI Specialist. However, she finally agreed to skip the waiting, so they’re refering me to one.

Meanwhile, I’ve got a horrible cough in my chest but it’s just a cold, nothing to worry the actual doctor with. I just can’t seem to stop coughing. Cough drops don’t help and it’s getting to the point where I pee just a little every time I cough, which is very embarrassing. Gah! You know, my puppy cannot sleep if I wake him up every few minutes coughing!

Tags: wellness, Takayasu's Arteritis, fibromyalgia, autoimmune kidney disease, IgA Nephropathy, chest cold

Wheel of Wellness

I saw the Rheumatologist yesterday finally.  Very nice guy.  I feel comfortable with him and I think he’ll get to the root of the matter, whatever it is.  He’s not one to jump to a diagnosis, which I like, and he doesn’t ignore what I’m telling him either.

I had to do some extra tests while I was there.

There was one for people who complain about dry eyes to see how much natural tears you do produce which was very weird and irritating.  They actually put paper strips in your eyes and you close your eyes for five minutes and then they measure the water stains.  Anyway, apparently my eyes are not as dry as I think they are.

Also, I had to have some chest x-rays because I complained of increasing shortness of breath with activity particularly involving inclines and stairs.  That’s something my GP hadn’t ever worried enough about in the last two years.
He said that the bloodwork that my GP had ordered prior to my trip to England had pretty much come back o.k. except my erythrocyte sedimentation rate (ESR).  He told me that someone my age should have about a 30 but my Sed rate came back at like 112.  Now J had warned me that this particular test wasn’t always accurate so I wasn’t alarmed.  In fact, the Rheumy himself told me that the test was known to be problematic; if it isn’t performed correctly by the lab, the results can be inaccurate and even if it is, the results don’t always mean that the inflamation is particular to anything in particular.  In fact, the results could have been skewed by my gallbladder issue.

So, he reordered that particular test plus ordered a C-reactive protien (CRP test), which is supposed to be more specific or something in pin-pointing inflamation present in the body — apparently if inflamation is one of the symptoms, fibromyalgia is not likely the culprit and it’s likely to be another disorder, syndrome, disease.

Because many of these illnesses are really diagnosed by process of elimination, my Rheumy has three illnesses he’s considering ahead of fibromyalgia:

• Lupus (which he indicated he’s doubtful it is)
  

  Lupus (systemic lupus erythematosus, or SLE) is a chronic disease that can cause inflammation, pain, and tissue damage throughout the body. Lupus is an autoimmune disease, in which a person’s immune system attacks its own tissues as though they were foreign substances.

  […]

  Lupus symptoms vary widely, and they come and go. Common symptoms are fatigue, joint pain or swelling (arthritis), fever, and skin rash (especially with sun exposure). Mouth sores and hair loss may occur. Over time, people with lupus develop nervous system symptoms, most commonly migraine headaches. Periods of time when symptoms worsen are called relapses or flares. Periods of time when symptoms improve are called remissions. Lupus symptoms rarely disappear completely. [www.webmd.com]

• Sjögren’s Syndrome
  

  Sjögren’s syndrome (pronounced “show-grins”) is a disorder in which the immune system attacks the body’s moisture-producing glands, such as the tear and saliva glands. These glands may become scarred and damaged, and exceptional dryness in the eyes and mouth (sicca syndrome) may develop. Sjögren’s syndrome may also cause fatigue, pain in the joints, and problems with the function of vital organs, such as the lungs, kidneys, and nerves.

  […]

  Commonly, people with Sjögren’s syndrome may notice:

  • Joint and muscle pain.
  • Exceptionally dry skin with decreased sweat production.
  • Vaginal dryness, causing discomfort, itching, and painful intercourse.
  • Burning sensation (heartburn) in the chest or throat caused by abnormal backflow of acid and other digestive juices.
  • Dry nose and throat, which can lead to sinus infections, bronchitis, and pneumonia.
  • A yeast infection in the mouth (thrush).
  • Increased fatigue.
  • Skin rashes, bumps, and bruises that can be sensitive to light.

  [www.webmd.com]

• Takayasu’s Arteritis (this is the one he seemed most interest in though it’s extremely rare)
  

  Takayasu’s arteritis is an uncommon condition in which inflammation damages large and medium-sized blood vessels. The vessels most commonly affected are the branches of the aorta (the main blood vessel that leaves the heart), including the blood vessels that supply blood to the arms and travel through the neck to provide blood to the brain. The aorta itself is also often affected.

  Less commonly, arteries that provide blood to the heart, intestines, kidneys and legs may be involved.

  Inflammation of large blood vessels may cause segments of the vessels to weaken and stretch, resulting in an aneurysm (bulging blood vessel). Vessels also can become narrowed or even completely blocked (called an occlusion).

  […]

  Approximately half of all people with Takayasu’s arteritis will have a sense of generalized illness. This may include low grade fevers, swollen glands, anemia, dizziness, night sweats, muscle aches or arthritis.

  The changes that occur in Takayasu’s arteritis often are gradual, allowing alternate (collateral) routes of blood flow to develop. These alternate routes often are smaller “side roads.” The collateral vessels may not be able to carry as much blood as the normal vessels.

  In general, however, the blood flow that occurs beyond an area of narrowing is almost always adequate to allow tissues to survive. In rare cases, if collateral blood vessels are not available in sufficient quantity, the tissue that is supplied with blood and oxygen by those vessels will die.

  Narrowing of blood vessels to the arms or legs may cause fatigue, pain or aching due to reduced blood supply-especially during activities such as shampooing the hair, exercising or walking. It is much less common for decreased blood flow to cause a stroke or a heart attack. In some people, decreased blood flow to the intestines may lead to abdominal pain, especially after meals.

  Decreased blood flow to the kidneys may cause high blood pressure, but rarely causes kidney failure.

  Some people with Takayasu’s arteritis may not have any symptoms. Their diagnosis may be discovered when their doctor attempts to take their blood pressure and has trouble getting a reading in one or both arms. Similarly, a doctor may notice that the strength of pulses in the wrists, neck, or groin may not be equal, or the pulse on one side may be absent. [www.webmd.com]

So, they drew some more blood and told me to come back in three weeks.  Here’s the thing.  I know I was feeling particularly crappy yesterday — the plumbing was all backed up for days, I told them I’d been having a migraine…last night I was having some weird pain in my lower back, which I assume is either associated with PMS or the backed up plumbing…I can’t help but think that somehow that’s going to result in an elevated Sed rate again.

Heck, I feel crappy today.  Migraine, back pain, stomachache.  I’m all stressed out about seeing the surgeon.

Tags: Rheumatology, Takayasu's Arteritis, Sjögren's Syndrome, Lupus, Lupus, ESR, CRP, fibromyalgia

Discombobulated Thoughts - Semi-Wellness Edition

• Today is not such a good day for me pain-wise. The pain really started two nights ago and has just sort of gotten worse and worse. I’ve tried treating it with Tylenol and Aleve per the GP’s recommendation, but that doesn’t seem to be helping. This morning has been so bad that it feels like my left calf is hard as a rock and every step is agony. It’s just bizare.
• My eye is twitching again. It’s really very annoying.
• I finally have an appointment to see a Rheumatologist. It’s scheduled for next Tuesday. Of course, that’s just the initial consult. Who knows what kind of testing he’ll put me through or how long that’ll take.
• I see the surgeon on Wednesday and having asked around I seem to have been refered to “the best”. Now I’m just waiting to see if he’ll do the surgery and if so, if he’ll do it with the tiny microscopic holes or the big nasty scar. I’m a little annoyed at El’s comment when she was comparing her surgery to mine — “At least you’ll have your health when you start”…I really wanted to say that if I had my health, I wouldn’t need the surgery, but I kept my mouth shut -er - fingers quiet.
• I’m meeting with a possible house-cleaner on Sunday morning.  I’ve said that this fatigue thing is just too much and I can’t keep up with work and house keeping and do other stuff; heck, half the time, I barely can do just work.  So, I’ve been looking for someone and I found this person on Craigslist.  She’s coming over on Sunday morning to look around and give me references and discuss what needs to be done.

  Basically, I want someone in once a week to vacuum, sweep, mop, clean the bathrooms, empty the trash, and wipe down the kitchen counters and every other week dust.  I’ll do the laundry, dishes, litterboxes, and picking up.

Tags: house keeper, fibromyalgia, gallbladder surgery, wellness

Tripping in the UK [Part I]

Well, the first sign of any trouble occurred when I reached the Boston airport. Somewhere between the bus from Portland and security, I lost my nifty really soft travel pillow. Logan airport’s security and Lost and found were extremely unhelpful and rude and ended up giving me a long distance number to call, which I’ve since lost. Hard to believe that lost and found is a long distance phone number.

So, my first expense on the trip was at the Logan airport buying a new one at the Brookstone kiosk (and they wouldn’t give me a discount for loyalty either ).

Interestingly, the International terminal was the dreariest airport terminal I’d ever been in and had the least number of distractions I’d ever seen. (Little did I know, that this is apparently the norm overseas. Apparently only we Americans truly need to be entertained while waiting on the next plane.)

The seat in front of mine on the long flight over was broken and stuck in the laid back position. Fortunately, there was no one next to me to my right, so I moved over. Still, it annoyed me the whole time, especially when the man was offered a seat that wasn’t broken and after take off, he returned to the broken one. It also annoyed me that this family of five seemed to take over our section of the plane and kept changing seats and getting up and such. Only one or two of them had tickets for our area and they even comandeered my old seat. I don’t mind if you trade, but I do mind if you are inconsiderate of everyone else. Especially since it was a night flight.

I had some troubles with my legs spasming on the long flight over. There just wasn’t enough space to stretch them out and one of the stewards got snippy with me when I got up and brought my dinner trash to their work area. Apparently you’re supposed to just sit and wait for them to come get it but I really had to pee and there was no where to put the tray while I was getting up. You figure out the logistics.

Anyway, six hours after leaving Boston, I arrived in Dublin only to be herded to customs which went relatively smoothly. He basically asked me where I was going and why and stamped my passport and sent me on my way. Now, I don’t know if all foreign airports are like this or if it’s just in the UK but apparently once you get off of a plane, you have to go out to luggage claim — wave to your luggage as you go past it with an odd feeling that you may never see it again — and back through security…or at the very least some semblance of that. Going I had to do that scenario but coming back, they directed me to turn just before luggage claim back into the terminal arriving inside of an area just after security.

However, in Dublin, I got the distinct impression I was in some sort of narrow hall of a maze and that there would be cheese a the end…but I popped back out at security. I again had to be searched and again ended up in a fairly dreary terminal.

Mind you, it was now about 8am, London time and the middle of the night my time. I badly wanted some coffee and my great plan had been to arrive with no foreign currency because I’d been assured by my father that everyone accepts plastic.

He was wrong.

The coffee shop in the terminal in Dublin that has planes going to London does not accept plastic apparently. They will accept American dollars. $8 is not enough for a small cup of coffee and an apple turnover however.

Not only will the coffee seller give you a bad cup of coffee but he will also give you Euros as change. Both are worthless. The coffee will be undrinkable and the Euros will be unspendable in England.

I wish I had the apple turnover now.

Anyway, so the next flight seemed rather uneventful. In fact, thanks to the Lorazapam, I don’t recall any of it.

It’s also possible that the Lorazapam is to thank for my calmness in what happened next as PW said repeated over the next 24 hours that if it had been her, she would “totally have freaked”.

The truth of the matter is that only one piece of my luggage came out of the luggage belt and it was that small red one in the picture. In that bag was a designer spaghetti-strapped purple bridesmaid dress, two pairs of black flats, a corset, a silver shawl, a silver hand purse and very little else. (Thank goodness for having packed my meds in my backpack and thanks to peskyapostrope for the toothbrush tip!)

In my very drugged, tired state, I just walked up to the lost luggage claim guys and told them that my larger bag never made it. When they asked me what it looked like, I said, “Like this one but bigger.” I wrote down PW’s phone number and address and they said the bag would be delivered later that day. I really was just so tired I thanked them and walked toward the exit. Really I couldn’t be mad. It wasn’t like that incident with Delta at all where they’d just screwed up one thing after another all day long. Everything had pretty much been fine except that one of my bags hadn’t made it.

So, I stepped out of the doors that let me into London and there were PW and English and they were happy to see me and we all did the greating thing and I told them what happened and PW was amazed at how calm I was.

I will say this about Aer Lingus. As snippy as that one steward was, the lost luggage guy was very nice. He found my luggage (it has missed the rerouting in Dublin) and it had made it to London and got put on a delivery truck for PW’s house. He didn’t call to let me know though because he thought I looked so tired when I left that he was worried he might wake me up. That’s very thoughtful.

Anyway, I did get the rest of my luggage six hours later — I had tried to convince PW that if it hadn’t shown up, I could just wear the bridesmaid dress the whole trip, but bride that she was, she didn’t seem to go for that and insisted I wear some of her clothes. Oh well. I think that purple would have gone well at Stonehenge.

English’s family was anxious to meet me so there was a big BBQ at his parent’s house that night. I must say that I really enjoyed meeting them even if they kept appologizing for all of the family drama. I kept trying to assure them that family drama is what I’m used to, but I don’t think they understood. They seem like a lively bunch and I liked them all except for one of English’s brothers’-in-law who appears to be as PW termed it a real “leach”. Anyway, he’s a creep — more on that later, I think.

After dinner, PW, English, The Creep, the boy children, and I went down to a local English canal behind the houses to feed the ducks and then play with one of the boys’ new birthday presents, a remote control car. Here at least are some photos of the English canal, the only photos I took the first day:

I’ll stick a bit of English history in here so you don’t think I frittered my first day in England away waiting on my luggage. The way that the English got things about the countryside and into the side from its shores and ports was most easily done via water, not just by river but by these little man-made canals. The way that boats made there way down these narrow little canals was by mules, horses and donkeys, believe it or not. Yup, they were pulled on what is know as a tow-way as seen below. The animal would walk alongside the canal and pull the boat to its destination.

To be continued…

Tags: UK, Brookstone, Aer Lingus, Logan Airport, fibromyalgia

Review: Keen Venice H2 Sandals — Day 1

Well, this is really a mini-review. I mean, you can’t really review shoes until you’ve really had a chance to test them out under some sort of stress test. For these shoes, that’ll be my upcoming vacation, but I thought I’d at least answer Tamara’s request as to how the breaking-in first day went.

So, I wore them all day, which is a record for me because I usually take my shoes off the absolute second I walk in the front door of my house. I much prefer my feets to be nekid than constrained by outerwear, even cute outerwear. However, I made the commitment to wear them all day to really test the shoe and, honestly, I didn’t mind them so much. I actually forgot I was wearing them some of the time until I tried putting my feet up on the sofa — and then my little inner-neat freak kinda freaked out.

O.K. So, as I mentioned yesterday, the soles are kind of cooshy but they are firm enough to offer good support. I felt like there was enough cooshy to cushion the impact to my sensitive tootsies just from walking down to Starbucks and it was quite noticable to me…I felt like I was “walking on air”.

I also want to note that yesterday was a good day pain-wise for my legs but I’m not sure if that was because I also had an excellent night’s sleep or if the shoes made such a difference. Maybe a combination. I am wearing the shoes again today, but I have had a little leg pain today so it’s hard to tell.

Anyway, I think you have to be careful not to adjust the sandals too tightly, but otherwise, I think they’re fantastic so far. If I still like the sandals when I come back, I’m going to look into buying the Keen shoes.

Tags: shoes, Keen Venice H2, fibromyalgia

These Shoes Were Made For Walking

Well, I’ve had some serious issues with pain lately. I’ve not been shy about it. I’ve talked alot about my legs. My feet hurt alot too.

When I was younger, I used to work for Winn Dixie and then later for Robért’s Fresh Market as a cashier and customer service rep. I also worked in a video store and at a movie theater at various times in my life. Anyway, the point is that in those service industries, I spent long, miserable hours standing on my feet and they hated me for it. My feet would just ache and ache until all I could think about was the ache in my feet and they would continue to ache even after I went to bed that night and sometimes they’d keep aching the next day when I woke up and got dressed and went to work the next day. I always wondered how other people did it day after day, how people who do those jobs their whole lives don’t go mad with the ache. You’d have thought eventually my feet would have gotten used to the standing and the ache would have gone away, but it never did.

These days, I have a sit down job and until a few months ago, I only got that kind of ache when I went shopping for an hour or so or did touristy things or when on long walks. Mind you, I like all of those things, just not the ache.

Now, I get the ache, about 5 or 10 minutes into my morning routine of getting ready for work. I get it in the grocery store. I get it when I take my dog out to piddle. I get it when I take my trash to the dumpster across the parking lot. I even get it when I press the gas peddle on my car. It just comes faster now.

So, I’ve been thinking that one way of combating this pain on my upcoming trip was a pair of really comfortable shoes, but I really wasn’t sure what to get. I mean, I’m the queen of cute shoes and unique shoes. Everyone loves my shoes. But I can’t say that my shoes are all that particularly comfortable. So I did some looking around and reading around and asking around…and this is what I ended up with…

I basically went to a sporting goods store because where better to find comfortable shoes for walking all over the place in? Then I decided that I wanted sandals to feel less constrained. I had received good advice from MJ who is an avid hiker/adventurer that Keen is an excellent brand as far as comfort. Therefore, that is the brand I looked at. The Keen Newport soles felt too hard and I thought they might aggrevate my poor little aching tootsies, but the Keen Venice had a softer sole so those were the ones I tried on. I chose the H2 style because I thought it would be good whether it was wet or dry weather.

Anyway, when I tried them on, they were like Heaven on my feet. I’m not saying they are the answer to my prayers and that my feet are never going to hurt again, but they are certainly an improvement to some of the shoes I’ve been wearing.

So, I bought them and I’m breaking them in today. I plan to wear them on the plan and on the trip. I guess I’ll have to give a follow up review at the end of the vacation as to how the held up and how they did for my achy feet…

As a side note, because I can’t pass up cute shoes…

I also purchased a pair of orange Crocs. They also are nice and cooshy. I think they make good “walk the dog” shoes if I can keep him from trying to eat them. I haven’t decided if I am going to take these shoes with me or not on the trip. Too outrageous? Even for me?

Tags: Keen Venice H2, Crocs, shoes, fibromyalgia

Writing A Program To Stop The Cruciatus Curse

I had a horrible night last night. Not only was my insomnia acting up really awful but my mind was racing all night about some sort of check boxes, turning them on and off in some sort of program and this had to do with the pain in my body but I couldn’t get it right and the whole night my body was in excruciating pain — I now imagine this is what the Cruciatus Curse in Harry Potter must feel like. All I kept thinking as the night went on is that there had to be a correct combination of checked boxes to make the pain stop.

Anyway, against my doctor’s advice this morning but under J’s, I took 2 Alleve with the 2 Tylenol my doctor told me to take. So far I don’t feel any better. When I woke up, my feet felt as if I’d been working behind the counter of a customer service desk for 10 hours and so did the back of my thighs and that kind of pain never went away quickly for me.

To be honest, I don’t feel rested at all and I feel like that Ambien was a complete waste. I need to find a way to rest at night. I think that would help a great deal.

Tags: fibromyalgia, insomnia, Cruciatus Curse, Harry Potter

What The Doctor Said

Well, today was the big visit with the doctor. In preparation, I emailed her a few days ago with a list of things that I absolutely needed to talk to her about and why and the two most important issues were the acid reflux and the muscular pain in my legs and elsewhere.

O.K. So I’ve got a new temp prescription for Prevacid but I have to go on Tuesday for bloodwork and when I come back I’ve got to have some tests for ulcers and for my gall bladder. I’m very tender to touch where my gall bladder is but then I’m tender everywhere but she wants to see if I’m just an acid machine or if something’s gone wrong in there; so there’s going to be an ultrasound and also a tube down my throat, which makes me gag just thinking about it, thanks.

She’s also scheduling me for some tests for fibromyalgia when I get back and some bloodwork for that also next Tuesday. This is due to the increase in my muscular pain and the tender points that I have. She noted that my joints do not appear swollen which is the first thing most people think is the problem because I’m overweight. It’s definitely the muscles that hurt.

Anyway, it takes time to get in with a specialist, of course; so they’ll set up the appointment while I’m in England.

In the meantime, she gave me a tranq for the airplane to help relax the muscles since the plane trips seem to aggrevate the problem and I end up in agony and told me to take Tylenol Extra Strength twice a day every day. She also gave me some tylenol with codiene to take with me on the trip in case I have a really bad day. Unfortunately, I should also be taking some sort of anti-inflamatory but because of my stomach, I can’t take Ibuprofen or Alleve.

We think that maybe last year’s car accident might have made whatever it is (if it is fibromyalgia) worse and now that I’m not all fogged down with the depression and actually active, I’m more aware of it.

Oh, and when I come back from England, she is looking in to seeing if my insurance will cover aqua-therapy even before the fibromyalgia work-up. Aqua-therapy is supposed to be really good for your joints and muscles, I’ve heard. Though I think it requires owning and wearing in public a bathing suit and I don’t think that’d be good for anyone…

Anyway, I’ve been chatting off and on with J this evening about fibromyalgia which she calls FM. She was diagnosed 10 years ago and she is what I would call a good role model of what to do right (as opposed to El who refuses to do any of the physical therapy, etc.). Anyway, talking to her has made me feel much more certain that I’m on the right track this time toward a real diagnosis. As I asked her questions about her symptoms and she described things to me, it was as if someone finally understood my pain, like a kindred spirit. She knew exactly what I was talking about when I talked about the weird aches and pains and bizarre symptoms like random limbs falling asleep for no apparent reason and the worsening of the pain in airplanes. I feel kind of relieved to have someone to talk to and ask questions and yet I understand that there’s no diagnosis yet.

Tags: fibromyalgia, acid reflux, Prevacid, depression

Fibromyalgia — Could I Have It?

So, yesterday, while everyone else was getting all hot and bothered about Abu Musab al-Zarqawi’s death — something I took at first with a bit of cynicism since he’d already been killed about 4 or 5 other times this year — or busy calling their Congressman to learn just how dedicicated he or she is to the sanctity of marriage — I’ve kind of enjoyed reading some of the transcripts from the liberal bloggers with too much time on their hands who want to know if their Senators masterbate (I can’t believe I typed that, Mom) — I was considering what might be causing the pain in my legs and other muscles.I’m not a doctor. I find that most doctors like to treat symptoms. I know that even more doctors shy away from Chronic Fatigue Syndrome and Fibromyalgia. Fibromyalgia is the one I kind of zeroed in on though. Actually, I really think a doctor should pay attention to me.

From Webmd:

Widespread, chronic pain—often described as deep or burning—is the most common symptom. This pain is more common in the body, hips, and shoulders, and it is rare in the hands and feet. It usually develops gradually and can interfere with even simple daily activities.

Other symptoms that commonly occur in addition to pain include:^{2, 3}

• Fatigue that interferes with work and daily activities.
• Sleep problems (difficulty falling or staying asleep, waking up feeling tired).

Less commonly, people with fibromyalgia may have:

• Morning stiffness lasting less than an hour.
• Headaches.
• Constipation or diarrhea related to irritable bowel syndrome.
• Memory problems and difficulty concentrating.
• Anxiety or depression.

Fibromyalgia can sometimes feel like the flu. You may experience body aches, tiredness, and intestinal problems. The pain in your joints and muscles may be especially bothersome at night, waking you from sleep, or in the morning, when you may feel very stiff and sore. You may have trouble concentrating because of fatigue. Symptoms can last from days to months or years.

People with fibromyalgia have periods when their symptoms become worse and periods when they have milder or no symptoms. Flare-ups of fatigue and muscle and joint aches are common, especially following physical or emotional stress. Many people with fibromyalgia report that cold or damp weather, poor sleep, fatigue, stress, or overexertion makes their pain worse.

O.K. Hmmmm Widespread pain. Yup. The last three days starting in my legs and emminating up in my arms, wrists and hands. It hurts to hold anything, grip the steering wheel. I keep telling people that my legs feel like they would if I’d been running for miles — you know, that burn in the muscle? And sometimes there’s just a cramp in the thighs and calves like there’s a lack of oxygen from the marathon they think I’ve walked. My fingers feel swollen. My right wrist feels like I’ve been cross-stitching for days. My left arm feels like I’ve been leaning on it for a month. I can’t lift an umbrella without feeling the burn. And to think it started with night time leg twitches a year or so ago.
And I got fatigue. I’m exhausted all of the time. All I want to do is go home and rest but I’ve got to go home and do laundry and take care of the puppy and do chores. I feel like there’s no time to do the things I want to do because I never feel up to doing them.

And we all know I have sleeping issues. Even with the ambien, I’m up three or four times a night. And do I have to point out about the headaches, the chorinc headaches and migraines?
Plus, I’ve talked here and elsewhere about my rotating constipation and diarrhea, which I’d really rather not discuss again…and now I’ve also got acid reflux, which another website points out is a possible symptom.

I’ve often contemplated if I have Adult Attention Deficit Disorder because I seem to have a short-attention span and a wandering mind. I find it difficult to focus in meetings and I find it hard to remember what tv show I was watching between commercials even. I also have trouble tripping over easy words a lot of the time. I’ve been blaming it on the depression and the medication, but now I wonder.

Also note that anxiety and depression are on that list. Which came first I wonder? The chicken or the egg?

Anyway, it’s something to think about.

Tags: fibromyalgia, wellness, al-Zarqawi

I Am Alive & Going To England

I appologize for seemingly abandoning this blog. The truth is that I’ve been distracted by more than a few things in my life:

• My grandmother’s death, as you know, took me somewhat by surprise and has caused me to do a lot of self-inspecting. Plus, I want to be there for my mother who I think took it a lot harder than me. Plus, the planning for the memorial service the weekend before Valentine’s Day in Florida.
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  Tags: Faith, God, Spirituality, migraine, wedding, England, paranoia, Samuel Alito, discombobulated, fibromyalgia

  2 comments See also in My Life, Politics & Causes, Friends & Family, Wellness, Discombobulated, The World, Faith, Migraine, Anxiety/Depression, Fibromyalgia