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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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.

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.

Feel Like A Slacker

I feel like such a slacker right now. I have had a horrible week. Scratch that, horrible few weeks. Not every day has been bad, just the majority of them. At one point we had to call my mother-in-law to come help with the kids while Hubby was working.

I’ve been getting the bare minimum done. Most of the dishes are getting washed. Dinner is getting made some nights, other nights the girls have to wait for their daddy to get home at 7 pm to make dinner (poor hubby has an hour commute each way on top of a pretty physically demanding job and has had to make dinner as soon as walks in the door). Some email gets read, not enough are getting written. I’m trying to stay on top of the job search, but I know I’m missing things. And, as I’m sure you can tell, my blog has been a little less…bloggy.

Cocker Spaniel mix asleep on couch

Wish I could kick back like this and not feel guilty about it.

I shouldn’t feel bad. I have a good reason for frick’s sake. I mean I had to text my husband while he was down stairs watching TV to come upstairs and help me out of bed so I could take my contacts out…I fell asleep while my daughter was doing homework and when I woke up the house was dark…This is not exactly normal behavior. I shouldn’t be beating myself up about all the stuff I’m not doing.

But I am. Just like so many of us with chronic illnesses, I tend to measure my day by what didn’t get done rather than by what was accomplished. Despite my best efforts to be kind to myself, I keep getting caught up in the thought I should be doing more.

I’m praying the tide turns soon and I start to feel better. I’m basically without health insurance until the end of November when the coverage at Hubby’s new job starts, so I can’t go see anyone. Even if I had insurance I don’t know who I would go see. The appointment with the new doctor was…interesting – I don’t know that I want to see her again but I’m afraid to switch doctors after something she said. Frankly I think the stress and anxiety over the fallout from that appointment is causing a serious Fibro flare which is really strange for me. Usually I have major Sjogern’s flares where my knees or ankles or everything swell for days or weeks and have lots of little few day Fibro flares. This would be the first serious long-term Fibro flare.

I know I need to relax and take.care of myself. But just for most of with chronic illness, that’s easier said than done. I’m going to focus on doing the best I can and try to celebrate my accomplishments instead of feeling like a slacker. I have a feeling it’s easier said than done.

Having A Moment

Is the glass half empty or half full? The pess...

Is the glass half empty or half full? The pessimist would pick half empty, while the optimist would choose half full. I HAVE SJORGERN’s – it reminds me how dry my mouth is! (Photo credit: Wikipedia)

I want to say it was another bad day, or that it was another day in purgatory or one of the other hundred things running through my head right now, but I don’t want to sound pessimistic. Generally I’m not a pessimistic person. But now and then, and I think it’s pretty true of anyone with a chronic illness or unemployed or both, you have A Moment.

You know what I mean. Where you feel sorry for yourself. Where you feel like things will never get better. The enormity and scariness and suckiness of everything going on descends on you and clings to you like a wet, cold bathing suit you have nowhere to change out of late at night. Always at night. Usually while you’re alone in the dark and the only sound is that voice in your head reminding you of all the things you’ve done to get yourself into this predicament and telling you all the reasons you’re not good enough to get out of it. Yeah, A Moment.

I’m having myself one now. I think I’ve got some pretty valid reasons for having one, things that are actually good to discuss in blog posts, I’m just not in a place to write those right now. I’m in a trying to make lists of things to do to prove to myself that I can make things better kind of place.

I know this will pass. Hopefully soon. I’m pretty good at talking myself through these Moments. But I wanted to come here and post about it. This is the kind of thing I want to make sure we talk about as a community, the kind of thing we can share and support each other through. We all have Moments, and you know what? It’s ok.

Personally, I think it’s ok to have A Moment once in a while. Life sucks sometimes. Get mad. Get sad. Don’t keep it bottled up. Let it out. Let it go. Then let’s go figure out what to do to make things as good as we can. Acknowledge the feelings, be upset and then keep going.

I’m talking more about the Blues, or a case of the Mean Reds as Holly Golightly put it in Breakfast at Tiffany’s. If every moment is A Moment for you, then please, talk to your doctor or a mental health professional. Depression is something different. Depression is serious. Depression lies. Depression is a beast,  and I’m 100% behind anyone who wants help battling it. Moments can be lying bastards too, but they’re a lot easier to beat into submission. If you’re having trouble, please get help.

For me, just talking about having A Moment helps. Acknowledging that this is what this is, just A Moment in time. This will pass. This Moment is not all that I am. It may be a bad moment, brought on by a string of not so great moments, but is just A Moment. Things will get better, somehow. Even if it feels impossible now, they will get better.

I truly hope none of you are having A Moment, but if you are, you are not alone. It’s ok. Things will get better. We will get through it.

I’m already feeling 100 times better than I did when I started this just by writing about it. If you have any words of encouragement for someone having a moment, or want to talk about what you do feel better when you’re having A Moment, I would love for you share in the comments below.

If you need help or to talk to someone right now, call 1-800-SUICIDE, visit the National Hopeline Network, or CrisisChat (they provide online emotional support, crisis intervention, and suicide prevention services).

Remember, even in your worst moments my Friend, you are not alone.

Putting My Life in the Hands of Someone New

English: Cartoon of 1906. The physician has pl...

I don’t think my appointment will go like this, but with a new doctor you never know what night happen! Cartoon o

The time has finally come for my first appointment with my new rheumatologists. I’m not comfortable saying who it is, at this point at least, so for now I’ll just call it The Center.

I’m really pretty excited about the appointment. One of the things I hated about moving was leaving my old rheumatologist. I loved Dr. O. She was kind, compassionate, tough when I needed it, and actually responded to phone calls and emails when I had questioned or needed help. The consolation was I moving to a city with a well-known and highly regarded center for the treatment of Lupus and other autoimmune disorders. The Center has doctors that are considered some of the best. They are some of the leaders in research and treatment in the country — they publish papers, speak on panels, guest edit medical journals, in short these are the people who are cutting edge of treatment and research for autoimmune disorders like Lupus, RA, Sjorgern’s Syndrome and others. If I’ve got to find a new place to go for treatment this seemed like the place to go!

But, as anyone who’s ever gone to see a new doctor and been greeted with something like, “And what makes you think you’re sick?” you know it’s not easy to walk into a new doctor’s office. There’s always that bit of fear in the pit of your stomach. And that part of you that gets ready to defend yourself or for a fight.

It shouldn’t be that way. I know that. You know that. But that’s that the reality.

You would think that a place that specializes in people who other doctors have refused to believe (because, come on, if you have the kind of chronic illnesses that would bring you to the doors of a place like this, a doctor somewhere told you that it was all in your head) will be different. You’d think that they’ll be kind. You’d think that they’ll be believe you. But still, there’s that little bit of fear.

I’ve had the pages and pages of patient background forms to fill out for weeks. They’re sitting on my dresser looking at me. Even as I type they are staring me down. I just haven’t been able to finish them. I’ve done a few questions at a time, just not buckled down and do it all. I’m sure it’s all a mental thing.

Let’s face it, I’ve been on a somewhat rapid decline the last year. There is a very good chance there is another diagnosis in my future – the one I’ve always known would probably come eventually and half dread, half look forward to just so it stops hanging over my head. If anyone can jump into the mess that is me with suggestions that might actually help, it’s these people. Then why am I so scared?

It’s the fear of the unknown. It’s the idea of putting my life in the hands of someone new. Even if these are some of the best hands around, and I am incredibly lucky to be able to be a patient at The Clinic. I think this is just one of those times I need to have faith.

 

Looking for Work with an Invisible Illness

As luck would have it I had my first in-person interview since loosing my job in February during Invisible Illness Week. My health issues were definitely a factor in loosing my job. And, to be very honest, I’ve struggled like most people with chronic health problems with the questions about working. How long will I be able to work? And, at times, how much longer can I keep doing this? How much more can I take?

Woman peaking over a Hire Me sign

Do you think they’d get the hint? Image courtesy of Stuart Miles/ FreeDigitalPhotos.net

But being rather stubborn, and having a family to support, I’ve been looking for work. I’ve had some requests for additional information, a few phone interviews, but this was the first real interview I’ve had. It’s the kind of job I have been looking for. It has all the things I like to do, involves my strongest skill set and is in the location I’ve been trying to get to. This could be the job I have dreaming of for years.

Only I have to wonder if this is the right time for it. I had hoped that without the particular work environment I had been in, without the tough commute and without the long hours my health would improve a bit. No such luck. If anything think I may be getting worse. My days seem to be non-stop fatigue, brain-fog and pain.

So I go into the interview after having been flared up for a few days, and I should preface this by saying I got a strange vibe about the interview from the first email I got  from them, thinking that this should be interesting. I was right. I forgot the names and versions of software I’ve used, I forgot the title of books I’ve read. I’m pretty sure I didn’t make sense a couple of times. In general, I sounded and acted like someone with an invisible illness.

You know what? I don’t have a problem with that. I do have invisible illnesses. This is who I am. This is what happens when I’m tired and stressed.

The thing is, you can’t exactly look across the desk at the person interviewing you for a position where the ability to communicate clearly and professionally is a high priority and say, “Sorry, I am having a really bad case of brain fog right now – can we take 5 minutes? Oh and my mouth is so dry from my Sjorgern’s flaring that I may lose my voice, can you get me a glass of water? I’d get it myself but the fibro is killing my legs.” Okay, you could say it but you and I both know that you would never hear back from them. You probably wouldn’t hear from anyone else because it wouldn’t be long before people started to hear about it.

Artistic photo of pills

Maybe it’s time to be realistic.

I don’t know what to think right now. Obviously I didn’t do well in the interview (I don’t think they did either, but that’s a different story for another time), and I’m really not confident I could perform in the position that I’d want to. And that is so scary. As someone who was always praised for their work ethic and dedication and their ability to communicate, the fact that all of those things are basically shot to hell at this point is just gut-wrenching. And knowing that basically there is nothing I can do about it makes it even worse.

This is the time to be realistic and reevaluate where I am physically, mentally and emotionally and what is possible. I have an appointment with my new doctor next week, and that will tell us something too. Then I have a may have to change tactics a bit. It could be the kind of work I look for, it could be something that allows me to work from home. It could be having to take a step that I’m not necessarily mentally prepared for.

Just like everything else with invisible illness, I’ll take it one step at a time.