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.

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.

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.

 

 

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.

Tough Decisions

I’ve been doing some thinking, I’ve actually been thinking about it for a long time, and I think it’s time to try to go on disability. I’ve thought about it on and off for a few years and every time I put it off thinking I’m not really that bad, and then I get worse. Part of the reason I lost my job earlier this year was because I sick (long story and I signed paperwork saying I wouldn’t talk about it). I’m pretty sure the reason I’m having trouble finding a new job is because I go into interviews and by the time I’m in there for a few minutes I start forgetting things, lose my train of thought, and generally start blabbering like an idiot.

But it’s not just about work. Most days it’s all I can do to wash a few dishes, make dinner for the kids, read a few emails and get up and down the stairs once a day –  forget about showers, laundry, cleaning, exercise or the other 101 things I should do. The things a “normal” person does in a day. Some days I don’t even get to the dishes, dinner and emails.

Here I am fighting to find a full-time job and I can’t even handle being up and about for a full day. The only thing I’m sure I can do full-time right now is feel like hell, so maybe it is time to look at all options. Part of me knows it’s a logical, practical and totally reasonable decision. Then why do I feel so bad about it?

I know that there are people on disability (both through employers and through the government) who…embellish the truth, shall we say. People who are perhaps a little more abled than claim. I just don’t understand. I guess I can understand the allure of having no work responsibilities on a daily basis, but I don’t understand how you do it without feeling awful about it. I have put off even pulling up the webpage for months because I felt guilty even thinking about it. I’ve pretty much been working at least part-time since I was 19 – not just because I needed to, but because I wanted to.

I spent the better part of the last 10 years being the either the main or sole source of income for my family. I’ve worked really hard. It got to a point where all I could do was work, I didn’t have the strength or energy for anything else. It’s been ingrained in me from childhood that you work as hard as you can until your last breath. I can’t help but wonder if I’m giving up.

Am I the only one who feels like this? Has anyone else gone through this kind of thing? Am I just loosing my mind?

A Dark Place

I’ve started 2 or 3 different posts in the last 24 hours. I thought all of them sounded a little dark and saved them and sat them aside to go back to later to see what I was trying to say and what was bothering me. There was something I didn’t really consider until just a little while ago. I am in a really dark place right now.

There are a lot of reasons. Well deserved ones…everything from long-term unemployment and the related financial disaster it brings to totaled cars that can’t be replaced because there’s no money. When coupled with chronic illness and the related pain my new Dr won’t treat it is a recipe for disaster.

I know this. I understand this. The logical part of my brain is trying to hold everything in perspective. But with every set-back (and in all honesty with only one exception every piece of news we’ve gotten in the last 4-6 weeks has been bad news or a set-back and the good news wasn’t all that great) I just seem to slip a little deeper into this dark place.

You may have read a few weeks ago where I talked about feeling bad for a little bit, allowing myself to feel the feelings so that I could move on and feel better. Only as I each of these moments comes up I’ve had a harder time moving on and feeling better.

I know this will pass, I just need to hang on. It would be easier if I saw any chance of things getting better for us, but I don’t see how they will. At least not any time soon. We aren’t just operating in crisis mode any more, we’re in last-resort-no-other-choice-or starve mode. In the past the miracle we’ve been praying for would come along, not to save us necessarily, but to put us on a better path. Our miracle is at least a month overdue and I’m beginning to think we’ve reached our allotted number for this lifetime.

But I won’t give up, I can’t. As dark as the place I’m in is, and as much as I want to, I can’t. I need to find a way to make things better for my girls. I want to feel better, I do. I’m just feeling overwhelmed and stuck in a dark place. I’m praying I find my way out soon.

In the mean time, I hope that you’ll bare with me.