It’s all My Fault So Blame the Weather on Me

An Adirondack chair under a grape arbor in the snow

Ice, snow and freezing temperatures are all part of my birthday tradition.

The weather is really awful for most of the U.S. today, and I take full responsibility for it. If you go back through history you’ll see a long line of snow and ice storms and mind numbing cold temperatures on January 28th (plus or minus about 5 days). I can confirm this phenomenon has gone on since the 1970’s. How do I know? It’s my birthday.

I was born during a deep freeze, just after a snow storm. As a kid nearly every one of my birthday parties was rescheduled at least once because of the weather. One party wasn’t held until March because a pipe burst at the restaurant and there was major damage.

Now, I know what you’re thinking, “But it’s the end of January ~ of course the weather’s going to be bad!” You have a point. But, if we were to schedule a birthday get-together two weeks after my actual birthday, the weather will be bad that day too. I have years of facts to back me up on this.

So I apologize for any inconvenience I’ve caused. Trust me, I would put an end to this craziness if I could. The best I can do is hope you all stay safe and warm.

On a slightly related note, one year ago I said I was looking at making some changes. Then things changed a hell of a lot more than I planned. They aren’t done yet, but I think I’ve got a little better idea where they’re going. Thanks to all of those who’ve hung around over the last year. Stick around to see what happens next.

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Sorry for Being MIA

I’m sorry I haven’t posted any updates. I’ve been having a flare and put my focus on getting through the day as well as possible so that I can finally get out of it. Now I have what I like to refer to as the the plague…a case of the sniffles my youngest brought home last week and quickly recovered from (during which she insisted on constant snuggles which lead to coughing on me and kept drinking from my cup despite being told not to). Of course I have the grown-up sick-person version complete with low-grade fever and chills.

Any way, I hope you’ll forgive me. I promise to be back to posting my usual drivel soon. In the mean time please accept this picture of my 16 year old dog trying to look all sweet and innocent but sticking her paw out to trip us as we walk into the kitchen.

Old dog on a pillow

Schmoopie may look like a sweet and innocent 16 year old dog, but I think she was trying to trip us for a viral video.

Second Appointment: The Aftermath

I had my second appointment with my new rheumatologist last week (sorry it took so long to post an update, I’ve had my hands full with a sick kid). I’m glad to report that the appointment went much better than the first one. Then again there was so much room for improvement there wasn’t really anywhere to go but up.

One interesting change was that she had a 3rd year resident working with her this time, so I spent a long time talking to him. Then he relayed a lot of the information to her. I don’t know if that made a difference in how much she believed me, but it did change the communication dynamic.

I’m having trouble with my hip right now, and that dominated conversation. I find it very interesting when I brought up some topics they were ignored or shot down. When I said that I was in a lot of pain she looked completely dumbfounded. She honestly looked shocked and confused that I would be in pain when I was experiencing inflammation in my hip. She asked if I tried Ibuprofen and was I sure that didn’t make everything all better. Yeah, pretty sure.

Because of the medication I’m on they wanted to rule out any physical damage I had to go for X-rays right away. I was told repeatedly it was very important that I call back in 3 days to find out the results and see whether the doctor wanted me to go for an MRI. I called and just missed office hours on the 3rd day, in my defense I figured if they said it takes 3 days to get the results in their office then it was probably closer to 3 full days and then on the 3rd afternoon I had a sick kid incident. I called on the 4th day and found out the X-ray was normal, but the nurse had to go looking for the results and had no idea if the doctor saw it or what I was supposed to do next. She said she would talk to the doctor and call me back. That was last week. I haven’t heard back from them.

So yes, things went better. There are still things that bother me. I’m flabbergasted that a doctor with her reputation seems so flummoxed by the idea that I’m so troubled by fatigue and pain. I could understand if they weren’t two of the most common symptoms of all  the stuff I’ve been diagnosed with, but I would have to guess a doctor with years of experience with these illnesses would not only expect to hear it but would be prepared to discuss it!

I’m not 100% sure that I want to stay with this doctor. I may try one more appointment. Or at least see what happens with the follow-up from the hip. But I’m curious to hear what other folks have experienced. Have you decided to change doctors because you didn’t get along with them? Did you break up with a doctor? How did you make the decision? I’d love to hear about your experiences in the comments section below.

 

 

Friday’s Guilty Pleasure for 12/6/2013

For the first Guilty Pleasure of 2014, I’m sharing something I will admit to using over the holidays – prepared cookie dough in a tub.

Now, I know that a tub of cookie dough is not the kind of thing a person with chronic health issues should be eating. And it’s not something that we always have on hand. If you don’t have it, you can’t eat it. If it’s in the house I will make a fresh-baked warm cookie every day. Multiple times a day if I can. Not having it in the house is just better for everyone.

I love making chocolate chip cookies. I have my own variation on the traditional Toll House recipe. I used to bake just for the heck of it. My parents would run out for a couple of hours and when they got back I’d be up to my eyeballs in cookies. But let’s face it, I just don’t have the energy, the strength, or frankly the kitchen space at the moment, to bake. Tubs of cookie dough are the perfect solution.

Tub of Nestle Toll House Chocolate Chip Cookie Dough

It may not be healthy or home-made, but it sure is yummy!

The tubs of cookie dough let you make as few or as many cookies as you want. I’ve made two cookies, I’ve made the whole tub. And since they’re just scoop and bake, they’re pretty Spoonie/Chronic Babe friendly (though I would get it out of the fridge and letting it warm up a little to make it easier to scoop).  Using something like a small ice cream scoop or a scoop made for cookies works really well and is easy on the hands.

You know I look at the cost of things too. Honestly, you’ll have to check this out yourself. The cost varies by brand, flavor, amount, and even time of year (I’ve noticed the cost goes up a little around holidays, but you can usually get it on sale). It is a convenience so you’ll pay a little more, you have to decide if having cookie dough at your finger tips is worth the impact to your budget.

Ok, stop looking at me like that, I admit it…yes, you can eat the cookie dough if you were so inclined. Of course I would not recommend it. It is not good for you. It is terribly addictive. And it’s a whole tub of the stuff in your fridge screaming out your name…*Reads leagal notice*…I mean you should not eat raw cookie dough. *Cough*

Sometimes when you’re chronically ill and just trying to survive the day-to-day little treats like warm cookies from the oven are extra special. Personally, I say if you need to take a short cut to get you there and keep yourself as well as possible, then do it!

If you have an idea for next week’s Guilty Pleasure – or if you would like to be the special Guest Blogger and write next week’s Guilty Pleasure post, drop me a line here! I would LOVE to hear your ideas. Especially all you Spoonies and Chronic Babes – what are the those little guilty pleasures that make the bad days a little better? Let’s share and help each other!

Going For the Second Appointment

You may remember me talking about my doctor’s appointment in the fall with one of the best rheumatologists in the area I just moved to. Not only that, she and the clinic are highly regarded and respected across the country. But just like any time I see a new doctor, I was anxious. Well it turned out I had an awful appointment.

She hadn’t read my whole file sent by my old doctor, it was too long. She asked me questions about what was in the file, then questioned my responses. She actually said the one thing a medical professional can say to upset me more than anything else, “What makes you think you have that?” (The response, because a Dr diagnosed it.) I really felt like I was defending myself the entire time I was in with her.

Then there was the whole pain thing. She wanted me to go a pain clinic and didn’t seem to understand that I was going to be losing my health insurance for several months And couldn’t get into a clinic before my insurance ran out. And because there are still problems I still haven’t gone because I can’t pay for it out of pocket. I also have no way of getting there if I could afford to go. Her suggestion when I called to say I couldn’t get an appointment? She told me the maximum over the counter Tylenol to take a day, get an appointment as soon as you can, good luck. (It felt like it was the first time in a long time someone accused me of being a drug addict – other doctor’s I’d seen, including those in the ER, were worried that I was under medicated.) That was September. I stretched the pain meds out I had as long as I could, but there have been sleepless nights, days I wanted to scream, and times where I literally pulled my hair out.

Now it’s time to go back. I’ve debated since I walked out of the office whether I should go back. My husband sided on find someone else. My family and friends said I should go back…she is one of the best after all. They had good points, she could have been having a bad day, or maybe she doesn’t have a great beside manner. I did some digging on-line and she has gotten rave reviews for her care and going above and beyond for patients.

Was it me? Did I somehow misinterpret the whole thing? Was she having a bad day? Was she more all business because it was the first appointment? Should I be this nervous and upset about even going to an appointment?

If I’m thinking that I’m getting to the point where I can’t work any more, I need to have a doctor on my side. If she’s not going to be on my side I need to find someone who is. I really don’t have the time or energy to go through this dance a bunch of times. I have certainly have no “God Complex” kind of thing when it comes to doctors – they are just humans and capable of making mistakes as the rest of us.

So I turn to you dear readers.  My husband can’t go to the appointment with me. My Dad is going to drive me and it sounds like my step-mother who is a nurse may be coming so I’ll ask if she’d be comfortable coming in with me if she does. But what do you think? Suggestions? Words of encouragement? Advice?

I know to take my list of questions, I always have a notebook with me at appointments. I’ve been tracking symptoms through an app on my phone. So I know how to go to the appointment. I just need to know how to feel better and more confident about going.

2013 in Review Or 2013 You Sucked!

Normally I’m a pretty nostalgic person. I get a little sad at the end of the year over all the good times that had passed, the loved ones we may have lost, and the blessings we were granted. Not this year. Nope. I will be grateful when the clock strikes midnight and 2014 has finally arrived and the Year from Hell as breathed its last.

2013 graphic

Don’t let the door hit ‘ya 2013!
Image courtesy of Sira Anamwong / FreeDigitalPhotos.net

Last year as 2013 started my hubby and I toasted to the new year with our girls over sparkling cider with the hope that our family would be back home in Pennsylvania. Well we are, but it didn’t go down the way we hoped…

Who would have guessed just over two months later I would lose my job, and with it the sole source of income for the family. Unemployment in the state we were living in topped out at less than $400 a week, and I had been making more than that…much much more. Needless to say things went from bad to worse pretty fast. We moved to our home state to be closer to family and where there is a lower cost of living. A good idea but it took my kids away from the schools and friends they knew and forced them to start over in a location we weren’t (and still aren’t 100%) comfortable with.

Fortunately my husband found a job in the industry he worked in before we moved away. Unfortunately he makes about a fifth of what I had been making. I applied for jobs every week and went on interviews, but got nowhere.

Mean while my health, which had everything to do with me losing my job, just got worse and worse. It wasn’t long before the brain fog I was feeling everyday was seeping into the interviews and I couldn’t really hide it any more. I get up and get the kids to school and have every intention of getting lots of things done, but most of the time I end up laying down and going back to sleep. I had my first appointment with one of the best rheumatologists in the city, who happens to be highly respected for her work across the country, and it was awful – I’m not looking forward to a second appointment in a few weeks (that’s another post for another time),

Then there was the violent meeting between my husband and a large deer while he was on the way home from work one night that totaled our car. We couldn’t get a loan to get a decent car and bought a car older and worth less than the one that was totaled. My husband seems fairly confident in this decision. I wish I was. In the less than two months we’ve had it, it spent almost two weeks back at the place we bought trying to figure out what was wrong with it and we owe them another $200. My in-laws felt bad because they found and convinced us to buy it so they paid to have some of the other stuff wrong with it fixed. (Yes, we bought a car we knew had problems because that’s all we could afford.)

I know it sounds like it, but it wasn’t all bad. I’ve been spending more time with my daughters. I’ve been cooking more, which means more things “from scratch” and less from a box like my husband does. My girls seem to like and it. I’m getting to cook with the girls and teach them a few things, which they seem to enjoy – but it can be hard to tell sometimes with a 15 year old.

Let’s not forget I wrote my first novel. It still seems strange to type. I’ll be working on editing that and writing the next one in January. I don’t know where it’ll take me. Hopefully someone will read what I write, and I’ve got some ideas on how to get it out there, but at the moment telling some stories and getting them out of my head and on the page is the important part. I mean it doesn’t make much sense to plan on publishing and marketing when you don’t have a finished story yet. So I’m focusing on one step at a time.

It’s so hard to look back and realize that in less than a year we went from giving to Toys for Tots and food pantries to receiving from them. I know it’s just a bump in the road. I know we’ll get through this. We’re together and that’s the most important part. Our family and friends are being really supportive and that’s huge.

Despite everything that happened in this year we’re still hopeful. Things will get better. It doesn’t change the fact that 2013 sucked.

Here’s hoping 2014 is better. Happy New Year All!