Double Whammy

I’m in the midst of what feels like of a double whammy – both my Sjorgern’s and Fibro are raging right now  – and of course I’m behind in EVERYTHING to begin with and getting further behind each minute. So I really haven’t felt up to posting.

A little girl in a sun bonnet circa 1973

When life was simple, the world was good and a kiss could make things all better.

I also haven’t been posting because frankly, I’m hurt and I’m angry and I’m sad and feeling completely worthless and defeated, and I really don’t feel it’s fair to subject you to that right now. I can’t even begin to put into words just how bad things are. I’m not just talking physically, I’m just talking all the way around. Frankly, it doesn’t even seem like it’s all real because this kind of stuff doesn’t happen in real life. Things are supposed to get better when you have faith and you have people who love you. Only I guess they don’t.

Any way. That’s why I’ve been posting pictures. Trying to put something happy where I should be. So today I offer-up something to the Throw Back Thursday Gods…going way back to the early 70’s…When things were simple, and a kiss could make things better.

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Like Mother Like Daughter

The last month or so has just been one steaming pile of crap on top of the last. I’ve found it really hard to have the motivation to post anything positive. And frankly, it is far too easy for people in my real life to come here and read this for me to be as honest as I’d like. So I haven’t felt much like posting. Until now.

The biggest thing the last few weeks is that my daughter has been sick. I’m not going to go into detail, she’s 15 and it’s really her business. But, long story short, we have no idea what’s wrong. There’s been a couple of trips to the local Children’s Hospital (not just one of the best in the state, but one of the best PERIOD) to see a specialist and for tests and there are more to come.

So far everything has come back normal. Which is great! But as all of us Spoonie and Chronic Babe types know, it’s frustrating as hell. She’s still having the same problems. She’s not getting better. We may have ruled a few things out, but we aren’t really any closer to having an answer. Without an answer, there’s nothing I can do to make her feel any better.

Teenager in hospital gown

My daughter is a medical gown fashionista

Worse still, this mystery is impacting her ability to go to school. It’s pretty much impossible for her to make it through a whole day of classes without needing some sort of break, or feeling like she’s going to be sick. Between that and missing classes to go for doctor’s appointments and tests, she’s missed a lot of class. Needless to say the school is not happy. Let’s just say we haven’t necessarily gotten a lot of care and support from those who are supposed to be interested in seeing her get through this and succeed in her classes.

The nurse at school has said she doesn’t know if my daughter is well enough to keep going to school. The doctors don’t seem all that prepared to say she’s sick enough to not go to school without having some idea what’s wrong with her. So I’ve spent the last week scrambling to find other options for finishing the school year. Thank goodness I’ve found a cyber school that will take her for the last quarter of the year and have started the enrollment process.

But it take takes time and most days I send my daughter to school in tears as she struggles to make it to the bus. I can see how awful she feels. I can pretty much predict when I’ll get the first call from the nurse’s office about coming to get her. And I’m pretty much helpless.

There are some signs pointing to the possibility of auto-immune disorders, meaning she’d be like me. Just the fact that she’s had some sort of reoccurring illness in 9th grade makes her a lot like me. The fact that we don’t know what’s wrong with her makes her even more like me.

I’m proud to say my daughter is like me in a lot of ways…We both love to play the flute. We love to be on stage. We can’t help but write, and we’re not horrible at it…The list goes on and on. The one way I didn’t want her or her sister to be like me is in the health department. I’ve known all along that the chances were pretty good that one of them would follow in my health footsteps, but I really hoped they wouldn’t.

I know that all of this is out of my hands, but it doesn’t stop me from worrying. It also doesn’t keep me from feeling incredibly stressed while I’m trying to stay on top of doctors appointments for both of us, and the 101 steaming other piles of crap that are still here and have little to nothing to do with anyone’s health.

Maybe I’m wrong. Maybe it’ll turn out that she’s not like me at all. At least that’s what I’m praying for.

Friday’s Guilty Pleasure for 2/21/2014

Friday’s Guilty Pleasure is BACK! (Hopefully. I’m taking things day-by-day.)

We’re jumping back into the swing of things with a brand new guilty pleasure. Green Ginger Tea from Tazo Tea.

Mug of Tazo Green Ginger Tea

My new obsession, Tazo Green Ginger Tea

I have absolutely fallen in love with this tea. Now, I am not a big tea drinker, hot or iced. But I was introduced to chi lattes at a certain coffee chain (I don’t drink coffee either, I just go there for the tea…and for chocolate chip banana coffee cake, it goes great with the chi tea) and have slowly been developing a liking for it. Very slowly.

I decided I wanted to try ginger tea because I’ve been hearing so much about it being good for inflammation, with all the inflammation I’ve been having I figure it couldn’t hurt. I also heard that it was good for digestion and a bunch of other things. Okay, I heard a lot of this from Dr. Oz, one of my youngest daughter’s favorite TV shows. The idea that a little tea could double as an anti-inflammatory and help with a slew of Spoonie and Chronic Babe type issues seemed worth checking out.

While ginger tea was on the shopping list, I wasn’t necessarily looking for Tazo tea. I was looking for Tazo chi tea and when I got to the store there was a 2 for something like $7 special on Tazo, and since they had the ginger tea I thought why not. Tazo is definitely more expensive than some of the other brands, but in my limited tea experience, you get a little stronger and more flavorful tea for the price. Since I don’t drink a lot of tea it seemed like a worth while investment.

This tea has a really great flavor. I was worried that it was be…I don’t know sort of bitter or hot because of the ginger. But it’s got this great tiny touch of heat to it that warms you from the inside out. It’s green tea so it doesn’t have the strong tea taste that I don’t like and it doesn’t have a lot of caffeine. The description says that there’s pear flavor in it, but I don’t really taste it. I put honey in mine, but that has a lot to do with first making it when I was getting over a cold and the honey helping with the sore throat.

So check it Tazo Green Ginger tea if you like tea. If you don’t like tea you might want to check it out too. It’s really yummy.

Thanks for sticking around and checking out my Guilty Pleasures. 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!

Down the Chronic Illness Rabbit Hole

I feel awful about not keeping up with things here on my blog. I decided late last summer that I would be posting at least twice a week and that I would be talking about things that would be helpful and hopeful to other people with chronic illness. Then winter rolled around and I started down the Chronic Illness Rabbit Hole.

You know what I mean, when all the little tricks you have to pull yourself out of a flare or pick yourself up don’t just do not work, they seem to make things worse. The times when you feel like you’ve finally reached the bottom and feel just as awful as you could ever feel, only to wake-up the next day and discover a whole new level horrible. I feel like I’ve been traveling down this particular rabbit hole for months. In reality I skirted the edge for a while, started to fall and clawed my way out a few times only to have the ground give way underneath me again. But as I’m sure anyone who’s been in the hole will agree, it doesn’t matter how far you’ve fallen or for how long, it’s always too long.

Logic would say I should call my doctor. The one who told me it was vitally important to immediately go get my hip x-rayed, then didn’t follow-up for more tests after getting the results for 3 weeks. Which was more than 2 weeks ago and I’m still waiting to find out details about the additional tests. (I’m guessing it’s nothing important – and since it’s gotten better, and worse and better again it really might be inflammation/flare like I tried to tell them.) If you’ve read about my experiences with the new doctor you know I don’t have a great deal of trust in her or her office, this latest…hiccup…fiasco…call it what you will…is not helping.

She hasn’t seemed at all interested in anything to do with my Fibro. She hasn’t really asked about my quality of life or interested in how I’m doing in a total sense. I did fill out a questionnaire at my last visit (granted it was my 2nd with her practice and we have no background or relationship yet) that asked some quality of life and general wellbeing questions, but she never followed-up on them. Her intern didn’t follow-up on them. Why have me go through the exercise of filling out a whole page of questions about ability to walk up and down stairs, fatigue, etc. and then not even look at them?

So why should I call? I’m not having specific or steady inflammation in any particular joint (though there is some wide-spread inflammation), and thankfully I’m not in a ton of pain. I’m not having specific symptoms that she’s found acceptable in the two conversations we’ve had. I just feel like hell. 24 hours a day. No energy. No strength. Just hell.

This isn’t really about her or her office. Maybe it should be. Maybe I should call. But this is more about that nasty little hole you get sucked into when your illness rages on and on and on.

Part of you tries to rage against it. But we know that doesn’t necessarily make things any better — more often than not it makes things worse. Part of you wants to crawl deep inside that hole and hide until you feel better — but not doing anything doesn’t help in the long run either, it just makes it harder to crawl out of the hole. You get up each day and do the best you can to survive and try to figure out how to get out of the hole.

Here I am, not the farthest down I’ve ever been, but definitely further down than I’d like to be. All I can say is that I’m doing the best I can. My focus has to be taking care of the day-to-day things like getting my kids to school  and making sure they’re fed each day and in bed at night. As much as I want to reach out, to be part of the world, sharing with others and helping others going through the same things, I really need to spend my energy (or my spoons if your familiar with the term) on taking care of the absolute our needs and try not to feel too guilty about all the things not getting done.

I’m interested in hearing from you. What do you do when you find yourself going down the Chronic Illness Rabbit Hole? Share your thoughts below in the comments.

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.