Friday, August 27, 2010

Diagnosis Dressing Room

When I go shopping, I'll see something I like and try it on. If I like it I'll take it home and try it on with other things. Occasionally I'll find that something doesn't fit or look as well as I thought it did. Other times I'll find that I don't have anything that goes with it. When I'm really looking for a specific article of clothing, I'll do some serious research. I didn't just buy a wedding dress. I checked out many styles online and in magazines. I went to stores and tried on many gowns, even after I thought I found 'the one'. Eventually I made it back around to the dress that was 'the one' and bought it. I was satisfied with it because I had tried on so many, and this one was exactly right.

The same is true of any diagnosis. I've tried on many hastily-made diagnoses only to get home and find out they didn't cover half my symptoms. Sometimes I'd be so over joyed at the Dr.'s office that I would forget there were outlying symptoms that didn't fit into the criteria of a condition. Frustrated, I'd return to my doctor to try something else on.

I've been tested for many things over the years and recently. I was pretty sure I knew what I had, I just had to wait for the right Dr. to see it too. I liked my rheumatologist, hence forward to be known as the 'rheumy'. I did feel a twinge of regret for the man, he seemed slightly taken aback by my knowledge and experience. I should have introduced myself differently. Perhaps something like; "Hi, I'm Katie. I'm a professional patient.". But he took me seriously and listened to my vast medical history. He's running a few tests on things I've already been tested for, mainly because the testing protocol has changed on some of them. Due to a lack of outward signs, I doubt anything will come up for Lupus or Rheumatoid Arthritis. The doctor agreed with me and said that I very most likely have fibromyalgia.

I don't like having it. I'd like to have had him say that there was a vitamin or mineral deficiency, but I am so relieved at receiving a diagnosis and medication to help it!

Happy Friday everyone!

Thursday, August 26, 2010

Table For One

Last week I got to spend some much needed time by myself. My parents had gone away on vacation and my in-laws were visiting. I needed to go to their house to feed the cats daily, and my in-laws stayed with Doug while I did this. I enjoyed nothing more than the drive to and from my parent's house. While I was driving I got to listen to whatever I wanted on my iPod. I got to crank up the music when 'Jump Around' came on and sing loudly and off key to my show tunes. Most of all, I was by myself. I was able to peel back the layers of daughter, sister, friend, wife, mother and illness for just a little while and reflect on who I was at the core.

Before my parents left my mom had promised me that the Monday after they came home, she'd come and take Doug for the day. All week I'd been looking forward to this, salivating over it as if it were a big juicy steak. Finally the day came. My mom promptly picked Doug up at 8am. I had no idea what I wanted to do! Part of me wanted to lay in bed all day, drink coke, eat popcorn and watch movies. The practical part of me (the one I kept telling to shut up) thought that running various errands without Doug would be a good way to spend the day. I decided that I would think about my options and go back to sleep for a while. Well, the realtor decided for me. She called me about 11, waking me up, to tell me that some one was coming by at 1:30 to see the house. I had no desire to be home while some one else was here, so I got my rear in gear and got up. I grabbed library books that needed to go back, Doug's birth certificate that needed changing, a skirt that needed mending, called in a refill to the pharmacy and grabbed my Nook.

I decided that my first stop was lunch. In the fall I'd discovered a brunch place called 'Eggspectation' in Columbia, not far from where I had to take the birth certificate. During my pregnancy I had a horrible craving for poached eggs, but I'd never had them before and couldn't because of the undercooked egg. I've since discovered that I love them, so lunch at Eggspectation was a real treat for me.

Before I was married, I would have been horrified at the thought of eating alone. I'd see people doing it and wonder how on earth they managed to. I've even found that eating lunch out with Doug is awkward. People give me odd looks while I have a conversations with him. Anyway, Monday I decided I was totally over the weirdness of eating alone. I brought my Nook to read and had a lovely time eating all by myself. I didn't have to worry about the next bottle or crankiness. I didn't have to eat while some one tried to throw himself into my plate. It was just me enjoying a nice meal with my Nook. The only not amazing part was how quickly the food and check came. The waitress sensed my unwillingness to leave and told me I could sit there for a while, which I did. Eventually I decided it was time to go and attack my various and assundry errands.

Even though it was a very busy day, it was nice to just be by myself, for a little bit. I'd found a certain kind of zen factor in being by myself and doing things. I didn't have to be anything else to anyone else. I never have regretted my relationships with other people. In many ways, they define who I am, give me my place in this vast universe. However, sometimes its nice to shed a few layers, if only for a few hours.

Monday, August 23, 2010

Rock the Boat Baby!

Wednesday morning I woke up fatigued and in pain to the point I was crying. Not a great way to begin the day, especially when your son is hungry. Luckily my in-laws were here and they took over so I could sleep. Sleep was unfortunately difficult due to the amount of pain I was in. As I laid there in bed, I got madder and madder about the situation with my doctor's office. I decided it was time for some action.

The first thing I did was to call the physical therapy office (2 days after the receptionist swore to fax the referral over there) to see if they had yet to get the referral. They had not. Color me surprised. From there I decided it was high time to launch a complaint against my doctor and the office staff. The office is associated with a larger network, with a university and some hospitals in the area. I wrote and sent the email really more for me. I doubted anyone would read it. The email was not angry, just curt and very factual about the many failings I had experienced at the hands of this office. Later that morning I checked my email and had a response. They'd received it and were forwarding it to some one else. That afternoon I'd gotten another response saying that it has been forwarded yet again. This was a lot more than I ever expected from my little email!

Thursday I actually got a phone call from some one in my doctor's office. I think it was the person in charge of quality care. I had evidently managed to ruffle quite a few feathers. She informed me that the fax had indeed been sent on Monday AND the receptionist who did it got a fax confirmation. I told her that this was not the case, as I talked to the physical therapy office and they had yet to receive anything as of Wednesday. She then went on to inquire about the infamous radiology referral. I told her that I was declining it. What I really wanted to tell her was that she could take it and shove it where the sun don't shine, but she was being very nice on the phone, so I stove to be as well. Next customer service lady told me that another doctor was reviewing my file. Here I had to stifle a laugh. I only have negative test results (and TONS of them) so this should be interesting. I don't really care what the other doctor says. I'm not wasting $25, an hour of my time and my energy to find out. After all, I'm going to the promised land of doctor visits on Friday, the rheumatologist.

This past Friday I decided to call the physical therapy office again, just for kicks. It seems they indeed got the hotly debated fax! (insert choir of angles singing). So I made an appointment for the following day, Saturday.

The appointment deserves it's own paragraph, or maybe even two, so here we go. The appointment was everything I'd wanted and more. I know, again, I am odd. The pt guy, as he shall hence forth be known, was very nice and very skilled. We quickly went through my history. When I finished giving all my negative tests results, I noticed a furrowed brow. The "Oh, my God, I can't be the one to tell her what I think she has" kind of look. I eased the tension by telling him what I thought it was based on the non-existent positive results.* And you know what, my dear internet peoples? HE AGREED WITH ME! After having my doctor shoot down my researched self diagnosis, it was so so sooo lovely to have some one agree with me. Made my week. Certainly makes me feel more relaxed about the rheumatologist appointment Friday.

So the treatment. The physical therapy I get is a little unusual. In fact, I think only two clinics in the D.C. metro area practice it. Its called 'Trigger Point Dry Needling'. Google it, its a real thing, honest. I've had it done twice before to great effect. Anyway, muscles can have these things called trigger points in them, little knots if you will. These knots remain tense creating tension in the muscle. The tension restricts blood and waste removal in the cells that are tensed. So, the pt guy finds the trigger points and uses an acupuncture needle to release the tension. They stick it in (doesn't hurt) and move it around. Basically your body senses injury and sends all kind of good things to the muscles to release the tension. When I left the office I felt kind of high for a few hours because my body was working so hard to stop the 'injury'. It's not unlike the high you get after a workout at the gym, or maybe like a runner's high, though I know nothing about that. The therapy itself doesn't hurt per se, it just feels odd. Kind of like having your muscles flossed. Hours afterward there is soreness, but the actual treatment doesn't hurt so much.

And that is how I spent my weekend.

*I'm not quite ready to release my self diagnosis the the general public. If it's confirmed on Friday, I'll let y'all know. What I think I have is not life threatening nor is it degenerative. It's just annoying. Really annoying.

Thursday, August 19, 2010

You're Fired!

Monday was the last straw for this camel. When I saw my primary doctor a few weeks ago she gave me two referrals, one for a more extensive gout work up and another for radiology.

The radiology referral was to get my legs checked for clots. I can't remember if I've mentioned it before, but I have pain in my legs (as well as everywhere else) but my doctor heard pain in my calves and jumped to clots. It's kind of become a running joke between Jeff and I lately. If I have pain in my arms or shoulders we declare that the clot has moved. If Jeff has pain in his ankle that he broke, then the clot has become contagious. You get the idea. There is no clot. If there was I'm fairly sure I would have had a stroke by now. Anyway, I had actually requested a referral for physical therapy. Imagine, getting actual relief for my pain! Is that done? Unfortunately my doctor had an "oh no, but if it's a clot I could get sued if I don't look for it" moment. Again, she declined to notice that I said it hurts everywhere and that there was never any swelling, redness or warmth in the area. Seriously, my nose and eyes are just about the only thing that doesn't hurt. So, I did the stupid gout test and found out that I don't have gout. Duh. I didn't say my joints hurt, just my muscles. She really has issues listening. But I refuse to do the blood clot test, because well, that's SO not the problem. When you're sick, tired and sore you don't want to go lugging the baby to an appointment in which you will have to wait an hour anyway to just have it come back with nothing. Negative test results are the only kind I get.

Anyway, last week I was really hitting a wall with the pain and decided to call in to get the physical therapy referral. I left the information and shortly after some one called me back form the office to get more information. This was about Wednesday. So I made an appointment for physical therapy for this past Tuesday. So a few days go by and no referral in the mail. Monday comes, so I call about it. Not only did they not have a record of the referral, but they didn't even have one of my request! So, after spending 30 minutes of the phone with some one, I thought we'd gotten it straightened out. She swore that she would fax one to the physical therapy office so I could keep my appointment for the next day. I knew better and I canceled my appointment. Yesterday Jeff went to get the mail, he comes inside and opens it. He reads a letter and then looks up at me. "What?" "You won't like this..." Sigh from me. "Just let me see it.." It was the radiology referral again. I'm not sure if my doctor is super adamant about the non-existent clot, or if the office just really can't follow directions. I just tore it up and trashed it. I did call the office that was supposed to receive this mythical referral by fax this morning. No fax. I am not surprised.

Here's another gem from my doctor's office. This, again, is one of those "this only happens to Katie" sort of thing. I have chronic pain (have I mentioned that enough yet?). Tylenol and rx strength Advil don't do anything and neither does regular Aleve. When I saw my doctor a few weeks ago she gave me a prescription for Aleve. It works out that rx strength Aleve is a little over two of the regular tablets (and also pretty worthless to me). She wrote a script for ten Aleve. Ten. Five days worth. Boy, was I relieved to know that I was going to be better in 5 days! Ahahaha. Not hardly. I don't know what she thought I was going to do with more Aleve. Grind them up and snort them? Sell them on the black market to stupid people? I know you shouldn't take some OTCs for more than a week, but chronic pain kind of gets a free pass there. She also didn't set up a contingency for when the Aleve ran out, you know, for something like physical therapy.

Other than a few good (or bad, really) stories, I haven't gotten much out of this practice. Needless to say, Monday I called around and made an appointment for a new practice for a few weeks away. I'm seeing the rheumatologist next week, and I'm sure, if nothing else, he'll give me a referral for physical therapy. Until then I guess I just got to deal.

Tuesday, August 17, 2010

Doug's First Word Document

Doug was banging on my laptop this morning and this is a copy of his first Word document:

"J ,,,,,,,,,,,i.;1\sazddddddddddddddddzsssssssssssssssswa\zeeeeeeerfc \ Uytghgv"

We're so proud.

Monday, August 9, 2010

Sick 101

I've decided to give everyone a crash course in sickness. I thought I'd explain to everyone what's basically going on and what approximately to expect from me for the next little while.

If you've seen me recently, you've probably noticed that I do not look sick. If I looked like I felt, I'm sure some one would have ushered me to the ER by now :) I generally try to keep some semblance of 'togetherness' about my person. You know, hair washed, matching shoes, etc. So, you're probably wondering what's wrong. Its nothing exciting, just chronic fatigue (not chronic fatigue syndrome, I'm just flippin' tired ALL the time) and wide spread muscle pain. I have several suspects in mind, but all I ask is that I not end up on that show 'Mystery Diagnosis' or 'I Didn't Know I Was Pregnant'. It's the small things in life that matter.

Now, for those of you who've never experienced fatigue, let me paint you a picture. When you're sick and need to do something you think about each and every little step that is involved. A non-sick person who has to go to the store with an infant makes sure she has everything for the infant, straps the baby in and heads to the car. I see an endless amount of things that need to be done first. A shower, getting dressed, changing and dressing Doug, getting all his stuff and then strapping him into the infant carrier of doooooom.* By the time I've gotten Doug in his carrier in the car along with my purse and diaper bag, I'm ready to be done. But I haven't even left yet!

It's not all so bad. I have good days and I have bad days. Unfortunately, on good days I tend to do too much which ensures that my butt isn't leaving the couch for much the next day. So, my current plan is to budget my time and energy. Things I've already committed to I will try to uphold. However, I probably won't and shouldn't make new commitments now. I hate breaking commits more than anything, so I'll avoid new ones for a while. So if you ask me to do something I'll be honest with you and tell you if I can or not. It's not that I'm flakey or that I don't want to, its just that I may be stretching it too far.

So that's what's going on.

Here's a good link to check out: The Spoon Theory

* The infant carrier is all fantastic for saving Doug's life and what not, but it's heavy. Doug plus the infant carries weighs approximately 28 lbs. When you can carry your 15lb son only four houses down to the mail box and back, 28lbs is a big fat hairy deal. I think normal moms would build up some serious biceps, but no, I just have an arm like a noodle afterward.

Friday, August 6, 2010

Soap Box

I know that this is a controversial topic, I've decided that I just don't care. I also know that both sides are so entrenched in their opinion that there's really not going to be a winner. But I do think that people need to remember to be respectful.

The other night I was watching the news while putting Doug to sleep. They had two people on debating the over turn of California's gay marriage ban. The pro side was saying that it was a civil rights issue and the con side was basically arguing that it would lead to the destruction on families and ultimately to the destruction of our society. I had to turn off the tv, place Doug in his crib, and go downstairs to rant about it lest I woke Doug up.

I understand that not everyone agrees with gay marriage. I can respect that. I don't agree with it, but I can respect our differences. However, my biggest problem with the anti-gay marriage crowd is that many of them don't have a good solid reason to be against it. I think in some cases the reason may be fear; its different, people have no prior experience with it. Fear leads to hate and we all know where hate leads to.

So basically, if you don't agree with it, be nice. No one is making you have a gay marriage. I don't see why two people who love each other can't be protected under the law like Jeff and I can. I want everyone to be able to experience the same joy.

Thursday, August 5, 2010

I've Gotta

I cannot count how many conversations are begun with strangers by that phrase. I'm out with Doug, and some one comes over to gush over him. They then announce that they have a child or children and then, lately, they proceed to tell me the various medical issues that their child has.

I just don't know how to respond to this. While they're listing their child's issues, I'm silently thanking God that Doug is healthy. And nodding and trying to keep a concerned and interested look on my face. The truth is not that I'm indifferent, it's that it's incredibly awkward when strangers over share. I'm also very tired. This level of social interaction at the grocery store wasn't budgeted for in my energy plan. While I'm sorry and empathetic that their family has been through this (I can't even begin to imagine an ill child), its a draining experience for me. I just want to get in and out of the store so I can go home and rest!

I try to humor them. They obviously feel a need to share whatever horror story that they have. I hope that sharing fulfills some sort of need in their lives. Last week I was having blood drawn and this woman came over to tell me about her two year old who was very very tall. She talked endlessly, way more than was socially normal or appropriate about it. I remember at the time that all I wanted to do was sit there quietly with Doug and wait my turn. Looking back, I think it was pretty obvious that she was lonely. I can't imagine the stress and isolation that may happen while you're dealing with a child who has difficulties.

Still, sometimes I wish strangers would keep their stories to themselves.

Wednesday, August 4, 2010

Classy Baby

Yesterday while we were out with Doug we happened upon a Little Gym. For those of you who are unfamiliar with them, it's a gym for children (shocking, I know). I went in with Doug and they were having their class for babies four to ten months old. Their parents and teachers were helping them roll, flip and do other various gross motor sorts of things. One little girl was crawling around on the floor as Doug watched her intently. If he could have talked I'm sure he would have said "DUDE! No one told me that my people were mobile!".

So, we (mainly me) are thinking of enrolling Doug in some sort of class some where. The Little Gym we visited was about 30 minutes from our house, if traffic is good. There doesn't seem to be another one closer. It's also a hell of a commitment for a 4 month old. The semester runs 20 weeks, which is definitely longer than a college semester. The price is...ok. They have two opportunities a week to attend class, with the second one being 'free'. It works out to be about $10 a class if you go to all twenty classes. I'd like to be able to go some where that we could pay per the class, at least for a while. I'm not sure how Doug will like it, how I'll feel and how the timing of the class will be. I don't want to take Doug to class if he's going to be hungry.

When I pitched the idea of a class to Jeff, he was not exactly on board. I believe he told me that I could take Doug to the free class and then do whatever it was they did at home. Which is true, I could. I've done enough with the infant/toddler set to be able to make up my own activities for us to do. But the activities are just part of the point of this. I'd like our weeks to have a little more structure. I'm not used to spending this much time with a child unstructured! Also, Doug and I need to get out more. Thirdly, I'd like to start to socialize the little beast!

So I'll do some research and some shopping around and see what I come up with. Any suggestions?

Tuesday, August 3, 2010

Phone Phail

Friday night we each got a new cell phone, sort of on a whim. We'd had dinner at the Rio in Gaithersburg and had about 2 hours until our movie. We each picked out different phones that we liked. We went home after the movie and tinkered with them for the rest of the weekend. Yesterday, we began to notice some rather irritating things about our new phones.

Jeff's phone had a small slide out key pad, a non-flip phone. So, obviously the phone had a key guard. Unfortunately, the key guard was one key. Which was easily pressed. Sunday night we heard a voice coming from Jeff's pants. Evidently he'd unlocked the phone and activated the voice command function. The phone was trying to text Jeff's boss, which was needless to say, not cool. My phone was kinda cool. It had a slide out qwerty key board and a touch screen. However, the touch screen wasn't sensitive enough, and it called everyone when I tried to set up my contact list. I have this reoccurring nightmare in which I need to dial 911, and for whatever reason, I keep mis-dialing over and over again. The other day I tried to call my doctor's office and I couldn't. Trying to call a contact not on the speed dial was not intuitive and took me nearly ten minutes to figure it out. It was my nightmare come true! The contacts list was also buried in several menus and not easy to access. Its a good phone, as long as you don't want to use it to call some one. It kind of fails in its primary objective.

So today we went to a local Sprint store in Laurel. We were told that we had 30 days to exchange the phones if we didn't like them. It turned out that we hadn't actually purchased our phones from a Sprint store, despite that the store was called 'Sprint' and had 'Sprint' printed on the receipt. After an emergency diaper change (what is it with the timing on that? always so inconvenient) we were back at the alleged Sprint store in Gaithersburg. We each got the same phone, one with a dial pad on front and a qwerty slide out key board. We each had the same phone before this too, it just didn't feel right having different phones, plus we both really liked this one. The phone is 'green', as in its environmentally friendly. I don't think it's due to recyclable materials or more efficient power but because it has some stupid apps you can get to tell you how to be green. Very silly. But we like the phones and hopefully we'll keep them.

Monday, August 2, 2010

Material Girl

I have to say, one of the things I like least about myself is my infatuation and need for things. As an adult, I've realized that I have this flaw and I do try very hard to over come it.

When I was in college, I was always hungry for purses, gadgets, shoes, whatever. I would inevitability succumb to this need and buy whatever it was that I wanted. Sure, I'd be interested in it for a little while, play with it, wear it out, whatever, and then I'd get interested in something else, and whatever the new thing was consumed me. Then I met Jeff. Suddenly, I wasn't so invested in my computer or a new cell phone. As time went on and I started working, I became even less prone to buying stuff. I grew as a person and realized that I didn't need things to fill my life so much.

Every now and again it gets a little hard to resist the urge. I'm out shopping with a girl friend, or some one shows off a new gadget and and this little monster inside of me rears its ugly green head and screams, "I WANT THAT!". Usually, I can over come this. I ask myself "Do I really need that?" "Is it going to make me happy?" (usually the answer is no, of course not). "Can I afford it?" and "Will I still want it in a few weeks/months?" Generally, I can leave whatever it is in the store and by that evening or the next day I've forgotten about it. Once in a while I'm prone to some retail therapy. Last week I bought a new purse (less than $25) that I didn't exactly need. But I liked it, and so did Doug and I'd had a very stressful day dealing with the doctor. Overall, I think I'm doing much better, especially as I realize we're running out of room to keep things!

Friday we dropped Doug off to spend the night with my parents, and decided that we were going to go to Thai and a movie. We finished dinner and had almost two hours until the movie started. The movie complex is in a little outdoor shopping mall. We decided to take a stroll and do some window shopping. The first store we came across was a Sprint store. I said, some what jokingly, that we should look at new phones, as ours were three years old. Well, more accurately, I believe that I said, "The Smithsonian called and they were interested in my phone." Jeff said we could look, "just look", so we went inside. The store was mostly empty at the time. I saw some phones with qwerty key boards, which I've been lusting after for some time. The salesmen came over and asked us some questions, and I asked him if we were eligible for an upgrade, it being three years since we got new phones. I have to tell you, I've never gone so long without purchasing a new phone! Anyway, it turned out that we were both eligible, and had been for quite some time, for new phones. To make a long story short, we each got a new phone.

Initially I felt a little guilty about getting a new phone. I don't need one, and it won't make me happy (well it will, but not that kind of happy). But it does fulfill one of my axioms. It was affordable, as it was free! So I've decided that this was a guilt free pleasure. Sort of like fat free frozen yogurt, but you know, good.