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.

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.

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.

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 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

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?

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.

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.

30 Things About My Invisible Illness You May Not Know

September 9-15 is National Invisible Chronic Illness Week. As part of the effort to get out the word and spread understanding I’m going to be taking part by writing several blog posts. The first is a meme that they do every year and one I’ve done in the past but rarely ever share…

1. The illnesses I live with are: Undifferentiated Connective Tissue Disorder, Sjögren’s Syndrome, Fibromyalgia, Raynaud’s Disease.

2. I was diagnosed with the first in the year: 2006

Sometimes you feel like life is passing you by.

3. But I had symptoms since: 1986 (my first flare was when I was 13, but I didn’t know it at the time)

4. The biggest adjustment I’ve had to make is: Admitting I can’t do things and need help.

5. Most people assume: That something I or someone else did caused the illnesses and if that changed it I would get better. My immune system doesn’t work right, and that’s not anyone or anything’s fault – it started so long ago I don’t think you can place blame anywhere.

6. The hardest part about mornings are: Getting up – I never feel like I’ve had enough sleep. No matter what time I get up I always feel like I could go back to sleep.

7. My favorite medical TV show is: I don’t usually watch them – I’ve seen and lived enough in real life that the TV shows are more frustrating than entertaining.8. A gadget I couldn’t live without is: My cell phone. My new phone can do everything from texting to word documents and slide presentations. I can do just about everything I need to do on it.

9. The hardest part about nights are: Being exhausted and just wanting to lay down but having to be up and moving and trying to be happy loving mom.

10. Each day I take 10-12 pills & vitamins. (No comments, please)

11. Regarding alternative treatments: I’m all for them. There are a few I would love to try, but insurance doesn’t necessarily pay for them the same way and I don’t have the extra funds to pay for them on my own.

12. If I had to choose between an invisible illness or visible I would choose: Neither. Let’s be honest, who would choose either one! With the inflammation and stiffness I have I’m often somewhere in between invisible and visible…semi visible…maybe that’s the “best” of both worlds.

13. Regarding working and career: I would love to keep working as long as I can. That’s my plan. But it’s getting harder and harder to work the way I used to, so I’m trying to reinvent myself a little bit. I think I can make a career for myself, it’s just not going to be the one I dreamed of when I was growing up.

14. People would be surprised to know: I am always in pain and always tired. Always. All the acting classes and skills I’ve developed pay off because most people will never know that I absolutely miserable and ready to cry until I’m close to collapsing.

15. The hardest thing to accept about my new reality has been: I can’t force myself to do things. I used to just push and push and push through pain or feeling tired and eventually I would feel better. But that doesn’t happen any more. I just feel worse. The more I push the worse I get.

16. Something I never thought I could do with my illness that I did was: Go to amusement parks with our kids. We had to rent wheelchairs or scooters so I could make it through the day, but I went and had a wonderful time.

17. The commercials about my illness: Are few and far between. Most of them are for drugs and make it sound like it you take a pill you’ll be out working in the garden again a week later. That’s not how it really happens. Especially when you have more than one illness!

18. Something I really miss doing since I was diagnosed is: Acting. I didn’t get to do much in the years before, but I did a little every now and then. My plan was to do more as the kids got older. Now I don’t know that I have the energy or strength to do a play or spend long hours on a set.

19. It was really hard to have to give up: Adventures…little things like bike riding or water slides or park rides or climbing things with the kids…even if I have the energy and mobility to do any of those things on a given day there’s the concern about the impact it would have on me the next day.

20. A new hobby I have taken up since my diagnosis is: I don’t have new hobbies, I just do the old ones more…like crocheting and writing.

21. If I could have one day of feeling normal again I would: Spending it with my girls and my husband having fun and doing all the things most normal moms can do. I would run and jump and go places and try to make up a little for all the things I missed.

22. My illness has taught me: It’s OK to have to stop and sit down or lie down. You aren’t lazy. It’s not you’re fault, it’s just the way your body works.

23. Want to know a secret? One thing people say that gets under my skin is: It’s a tie between “Why don’t you sit down?” (said every 30 seconds – I am capable of standing….most of the time…) and any sort of “That’s no big deal” response when I say something about my 8 year-old having to help me stand, or not being able to climb the stairs, or not being able to button things…I’m freaking 40 years old, not 90! That really is kind of a big deal, I’m not looking for their help or even their sympathy. I would like some sort of acknowledgement that I said something out of the ordinary. “It must be difficult,” or “I’m glad the girls are around to help,” or even the dreaded, “But you look like you’re doing better today.” would be an improvement!

24. But I love it when people: Listen to what I have to say and ask me questions. The vast majority of the time I am honestly not complaining. I don’t talk about every ache and pain and problem. I mean then we’d be there all day. Most of what I’m saying are facts about what my life is like. I don’t sugar coat things, and I don’t have anything to hide or be ashamed of – I’ll answer any question you have (Ok, I am kind of hiding my whole real name because I’m trying to find a job and I don’t want my health to be at the top of the Google search, but that’s a little different). I’m not sad (most of the time), and I’m not going to dump on you. So don’t be afraid to talk to me about it!

25. My favorite motto, scripture, quote that gets me through tough times is: This is just another bump in the road – a friend who passed a way from cancer a few years ago used to say that a lot. I figure if that’s the way she looked at things so can I.

26. When someone is diagnosed I’d like to tell them: You are not alone! There are a lot of us out here like you who listen and empathize and offer advice or a shoulder to cry on if you need one. Don’t give up, we’ll have your back.

27. Something that has surprised me about living with an illness is: That I would sometimes feel lonely in real life but surrounded by friends online. I am incredibly grateful for the people I’ve met through Twitter and some of the message boards I’m on.

From a recent almost no expense paid trip to the ER.

28. The nicest thing someone did for me when I wasn’t feeling well was: Clean my living room – a friend came over to help me update my resume and watch the kids while I worked on a job application and she cleaned the living room and swept the floor. She knew I was tired and it bothered me that I hadn’t done it so she just did while I protested the whole time. It was one of the first times I learned that sometimes you just let people help you.

29. I’m involved with Invisible Illness Week because: I want people to become more aware of invisible illness. More and more people have them, and we’re hiding them. Perceptions can’t change until we can talk about them. Just because I don’t look sick doesn’t mean that I’m not. Just because I’m sick doesn’t mean that I don’t have value.

30. The fact that you read this list makes me feel: Nervous and empowered. I’m worried what you’ll think of me. But, at the same time, what do I have to be ashamed of? This is who I am. This is what I am. Take it or leave it.

Related articles

• 30 Things You May Not Know About My Invisible Illness (myjourneythrume.wordpress.com)
• 30 Things About My Invisible Illness You May Not Know (currankentucky.wordpress.com)

Never Ending Flu

There are some illnesses cheery tissue boxes don’t help

People have asked me what having an auto-immune disorder is like. The best way I can describe it is like having a never-ending flu.

Some days it’s like coming down with the flu. You feel achier and more fatigued as the day goes on. Your brain gets fuzzier and you the only thought you can seem to keep straight in your head is the one about climbing into bed and staying there for a few years. Your body gets heavier, your joints get more painful and each step gets harder to take until you finally fall into bed.

Some days are like the worst days of the flu. Your body feels like it weighs a ton. You’re so tired and sore that even lifting your head takes an incredible effort. Your joints burn and ache. You’re so fatigued that you almost have to remind yourself to breathe, but you feel so incredibly miserable that you can’t sleep. All you can do is lay there and try not to be too annoyed by whatever is on TV because you’re too tired to be bothered to turn the channel. It doesn’t really matter because you can’t think clearly anyway.

Then there are the better day. The days you feel like you’re getting over the flu. When you feel like you’re getting some energy back. Some (not all, but some) of the pain and the inflammation in your joints is gone. You can think a little clearer. You have a bit of pep in your step. You feel a little more like you…a little more normal, whatever that means. These are the best days I get, there are no more “healthy” days for me, just little bit better days.

Maybe it’s a little simplistic, but it’s the best explanation I can come up with.

I’m curious. How do my fellow Spoonies and Chronic Babes describe what it’s like to be sick? We’ve heard the well know explanations and descriptions, but what’s it like in your daily life.

5 Things You Didn’t Want to Know

I thought it was about time to let you know a bit more about me in a segment I like to call: 5 Things You Didn’t Want to Know!

1. I’m allergic to cooked onions – you don’t want to know what happens when I eat them. It’s not pretty.
2. I am a proud band geek! I played piccolo in marching band in high school and college and then went back to my high school and was a marching and maneuvering instructor for a few years.  I’m very proud of my daughter who’s following in my footsteps. I still play flute occasionally and was in a community band a few years ago.
3. I have Undifferentiated Connective Tissue Disorder, Sjögren’s Syndrome, Fibromyalgia, and Raynaud’s disease…so far. Autoimmune disorders are difficult to diagnose and you never have just one. You tend to get more, or diagnoses as time goes on. There are many posts to come on this topic.
4. I used to work in small market television as a director and producer. I directed hour and half-hour newscasts and a really awful children’s program. Really awful. We got complaints. The hostess, God Bless, was a chain smoker that tended to cough stuff up while trying to read the stories and would have trouble breathing. The show got cancelled when someone made the new station owners watch it (it only took me two weeks of leaving them VHS tapes).
5. Stupid Human Trick: I can touch my tongue to my nose. The tip of my nose. Or at least I use to. Now with all my joint issues my jaw doesn’t open as wide so I can’t reach the tip unless I really work at, And let’s face it, touching your tongue to the tip of your nose just doesn’t have the same impact if you have to work at it.

Ok, so what do you want to know? Got a question? Want to share a thought? Share below!