Half Back

I know I’ve been on a break so to speak; a break from blogging, mind you, not from life; boy, that would be nice for a change.

When I contemplated writing posts again I fully had the intention of starting off on a positive note. I so wanted to tell the world that I had a new lease on life, that I had willed my illness away. Sadly, to no avail. I  My body failed in my objective to leave this illness behind and carry on with life; a new life, my life. Unfortunately, this illness has a mind of its own. It's quite akin to attempting to reason with a willful toddler.

Not starting out on the right foot it seems. Tomorrow, I shall try the other foot I suppose.

I shall continue to try to do my best to live with what I’ve got.

I might feel helpless at times, but I will never be hopeless...



Warning...Pity Party

Okay, am I the only person on this earth that absolutely abhors summertime? I don’t mean the heat either. I mean the endless days with nothing to do. Of course there are a zillion things I could be doing, but what’s the point really? I’m fairly housebound and cleaning something really isn’t on the top of my priority list at this moment in time. I’m lucky to shower every day; that can be considered cleaning…right?? I feel like a prisoner in my own home!

During the school year, since I home school my two teens, there is always plenty to do. Lesson plans, helping with schoolwork, keeping the kids in line, record keeping and such continue to keep the kids and I quite busy. Albeit, they can’t even really participate in outside activities as I can’t guarantee that I’ll be able to drive them to and from.

Plus this year I have committed to teaching in two home school co-ops (I know, I must’ve been on too much medication at the time!) I will be teaching Art Appreciation to high school homeschoolers in the spring, but I need to begin preparing now; I just wish I had the motivation. These classes are to be counted for .5 credits for high school graduation (no pressure). The thing is, is that I create these classes from scratch. I can’t even count all the hours I put into the planning. I also committed to teaching Chemistry to high school homeschoolers. The only good part about this one is that there are five other moms involved and we only really have to teach 4 chapters a piece.

Anyhoo, back to summertime, and well, life itself. I just feel so guilty when summertime comes around, since I don’t drive and can’t be one of those mothers that take their children here and there and everywhere during the summer break. Don’t get me wrong, I’m a firm believer that children don’t need to be entertained every second of every day, but when I have a teen son who plays video games for so many hours on end that I worry he’s going to get a blood clot, something’s gotta give. I just don’t know what or how to go about it.

Is it so totally sad that my dreams consist of my “old life”? Where I was one of those annoying loving moms that took their kids to museums, the theatre, movies, aquatic center, bird sanctuaries, the zoo, to play dates, etc. These days, my kids wake when they want, just because I don’t have the energy to go in and wake them. What for anyway? Am I going to wake them up so they can do nothing all day??? It’s such a struggle every morning to get my own lazy ass out of bed and for what, because the dishes need to be done, or laundry has to be thrown in? I used to be one of those moms that got up early, had my coffee and actually cooked a well balanced meal for breakfast before we set off on some new adventure. Now, I feel like a heap of useless skin. No direction, no motivation, no care, nothing, just nothing.

Obviously, I’m one of those people that can’t see the forest for the trees. All I see is one big ass tree that I can’t seem to get around. Now I’m thinking of that silly child’s song I used to sing to my children about the bear in the forest…can’t go under it, can’t go around it, guess I’ll have to go over it, or however it goes. Well, it seems as though I’ve been climbing and climbing and climbing and just can’t seem to get over it. I’m not one of those people that think that if it doesn’t kill you, it only makes you stronger. If that were the case, I could probably win the World’s Strongest Woman award many times over, and if Kelly Clarkson were in my living room, I think I’d have to punch her in the throat. As far as spoons go, I have none; I seem to have lost every friggin’ spoon I ever had. I wish I knew where to go to get some more.

And people around me just DON’T GET IT!!! I feel like complete caca when I see people on FB, “friends” of mine are getting together for a day at the beach, or going here or there. Do I get an invite? Hell no, why, you ask? Probably because they know that I’ll probably say no anyway, because I don’t drive that much. It sure would be kinda nice for one of these “friends” to give a call and say, “Hey, we’re going to so and so and we’d love for you to come, although if you’re not feeling up to it, I can always take your kids, I’m sure they’d love to go.” That would be an absolute Godsend. Is that terribly selfish of me??? I’d like to think that if I had a friend that was homebound with two antsy kids that would love to see the outside world every once in a while that I would so be willing to pick those kids up so that they wouldn’t feel so isolated, but maybe that’s just me.

I seriously want off this ride!

When It Rains, It Pours

These last four years have been the most trying years of my life. I really don’t know what I would’ve done if it wasn’t for my faith and my Big Handsome. Lately though, it seems as though we are all just falling apart by the seams health wise.

When it rains, it pours.

(Google Images)

When I think of that saying, my mind conjures up images of the air conditioner busting right in the middle of summer, the power going off while I’m on vacation, only to return home to a fridge/freezer full of spoiled food, or even the dryer breaking down and having to hang my skivvies out to dry for all the neighborhood to see. It’s pretty sad when one wishes these types of problems would happen instead of having to deal with physical health issues.

A few weeks ago, Big Handsome and I took our daughter for her regular cardiology checkup. She is now 16 and we’ve been doing these checkups regularly since she was 3. The checkups are usually every other year, but since I’ve been sick, she hasn’t been in a few years. She was born with a heart murmur. They told me it should close up by the time she was three. Well, that didn’t happen, so she still has the VSD and now on top of that, has a PFO that the dr. noticed when she was 5 or so.

During this last visit though (we were at the office 5 hours, didn’t get home until 10:30pm) the dr. noticed something on the sonogram that concerned her. Honestly, after hearing the words “this could be serious” my mind went blank. Having to stand by your daughter as she attempts to hold back tears of fear (with a heart rate of 101 lying down) is absolutely heartbreaking. The dr. did say that in her experience, it’s probably my daughter’s VSD that is causing the problem. The dr. took my daughter’s case to a cardio conference at the Children’s Hospital and they determined that she needs an MRI and another sonogram; I’m guessing it will be more in depth.

My daughter is now on a 30 day heart monitor, thankfully, no events to date. The stupid electrodes are giving her a terrible rash and we’re having a hard time finding a non-irritated patch of skin in which to stick them. Just this morning, we received pediatric electrodes in the hope that they will be less irritating. Good news is, she hasn’t had any events, and has been feeling fairly well. YAY!

Then…this past weekend, Big Handsome told me he wasn’t feeling well. Couldn’t really describe it (boy, don’t I know how that feels) just said that he felt funky. It took him a good long while before he got up the energy to workout. Big Handsome works out regularly, although that doesn’t mean that he is in tip-top shape health wise. He drinks, he smokes, he has a stressful job, and he has to deal with me (quite possibly the most stressful) and now is dealing with worrying about our dear daughter’s health as well as worrying about one of his best friends/coworker having cancer again and having to go through chemo, among many other things, I’m sure, that he doesn’t even tell me about. How much can one person take?? He ended up taking his blood pressure and it was in the high140’s/high 80’s-90’s. His bp usually runs lower than the normal 120/80 and his hr is always rather low. We were just at our GP recently for a physical and his bp was a bit elevated at 138/high 80’s. He found that odd, but nothing was mentioned during the exam. So now, we are left wondering. He is generally of the mindset, “if you ignore it long enough, it will go away”; I advised him to please not wait on this. We had blood work done just a few days ago and are waiting on the results. Hopefully, he just has some sort of benign virus or infection or something. This has us both worried though. I spoke with him this morning and he says he’s still feeling funky. He still can’t really put his finger on it; he just says that he doesn’t feel right. He might end up going to Urgent Care or something as attempting to make an appointment with the GP quickly is rather pointless.

I really just want to get off this ride. I would gladly take a broken appliance, a flat tire, even my skivvies dangling in the wind for all to see (all occurring on the same day even), but I just don’t think I can handle any more health issues.

I will keep on keeping on, and even though I may feel helpless at times, I am never hopeless.

“Hope is the power of being cheerful in circumstances we know to be desperate.” ~G.K. Chesterton

Pity Party Anyone?

Well, my GP appointment was a bust. I took in my binder with all my info, test results, articles, symptoms...you name it. The doctor wasn't all that interested. Don't get me wrong, she was a nice lady, but had a very limited knowledge of POTS. I didn't see my normal GP. I don't know why their idiotic staff has such a problem understanding me when I call to make an appointment with Dr. B. You'd think when one calls the office and says, “I'd like to make an appointment with Dr. B”, they would actually make an appointment for you with that particular dr., but no, not the case. OMG, I can't tell you how frustrated I am.

Stick a fork in me, cuz I'm  freakin' DONE!!

 

I went in to get my Xanax refilled, which she did, but then I told her I had some questions about my POTS and recent symptoms. I expressed to her that I don't have many of the "tell-tail" symptoms of POTS other than tachycardia (which by the way, is certainly not my biggest concern). I told her of my suspicions that there might be something else going on, like autoimmune issues and could I be tested for that. She looked at me and told me I didn't have autoimmune issues. I asked her how she knows if I've never been tested for anything. She briefly looked at my last few years of labs (which are all routine labs mind you) and said that something would've shown up on those. She advised me to keep hydrated and cool and reduce my stress. REALLY!? So I told her that I guess I am just destined to live my life feeling crappy every day. She didn't have a response to that. I gave her my neatly typed word document table consisting of all my symptoms, delineated by frequency. She glanced over it and gave it back with no response. When I informed her that I wanted to know what type of POTS I have, that maybe there is a different treatment if only we knew what we were dealing with. She said since I have tachycardia and all other heart tests were normal, it's safe to assume I have POTS. I felt like saying, “No shit Sherlock, my question is what type? She would have none of it. She told me we'd look at my blood work results during the next visit (in 6 months) and go from there. Apparently she missed the part where I've been dealing with this for four years now.

My husband was with me and I was near tears, but held them back. To my surprise, after the visit, instead of saying,  I told you so, you'll just have to live with it, he told me that the next step is to ask our daughter's cardio for a referral to a cardio or EP that specializes in POTS/Dysautonomia (since she recognized it in my daughter by just reading her symptoms).

I feel so done with it all at this point, I don't even know if I want to even consider seeing anyone else. I feel like I will just have to go on pretending that life is just freaking dandy and if I ignore it long enough, it might just go away.

So much for my time and effort in compiling my notebook...

I'm so disgusted, discouraged, disheartened and any other dis word I can think of.

Sorry for the rant, just wanted to get it off my chest. It's beer-thirty here, as far as I'm concerned, and I'm going to have a few and wallow in my self-pity for the rest of the day.

To Pursue or not to Pursue...

To Pursue or not to Pursue…

That is the question. I was diagnosed with Postural Orthostatic Tachycardia Syndrome in 2009 following an ER/hospital visit. “Visit” isn’t quite the right word. To use the term “visit” implies that one has a choice in the matter, like, “I’d like to visit the sulfur cliffs in Pamukkale, Turkey". I’ve never known of a person wanting to visit the ER/hospital for their own health reasons. So, I guess I should really say, I was diagnosed following a totally reluctant, dragged kicking and screaming (really I was just driven by Big Handsome as I lay lifeless in the front seat, but if I’d had the energy and wasn’t so worried I was going to die on the spot, I would’ve definitely gone kicking and screaming) ER/hospital stay.  Actually, I was diagnosed after having a Tilt Table Test with “probably POTS”. This begs the question, do I really have POTS or is it just probably?

I’ve been to Cardiologists, Electrophysiologists, GP’s, a Neurologist and even a Psychologist. They’ve all just taken the original diagnosis, concurred, and other than my current GP have given no efforts to treat me. It’s always in the back of my mind that something else might be wrong. I am a firm believer in “everything happens for a reason.” Not in the spiritual sense mind you (although I do believe in that as well, just not for this instance), but in the sense that there must be a reason for this illness. I feel like once that reason is discovered, maybe, just maybe I could get better treatment and attempt to get my life back.

One thing I haven’t done is travel to the few specialists around the country. I’m still on the fence about this. I feel like, why travel for them to tell me what the others have told me, “There’s nothing we can do, eat more salt, drink more water and go live a normal life”? My life over the last four years has been anything but normal. I know it sounds silly, but I can’t just pick up and fly around the country for appointments. For one thing, Big Handsome would have to take time off work. Not that he’s not willing to do that, but how much time? He’s my American Express card so to speak; I never leave home without him. We don’t have family near us that can help out with the kids either, which means that we’d have to drag them along with us. I know you are probably wondering why I complain about all these things and never seem to attempt to find the answers no matter how inconvenient it might be. This is a question I ask myself frequently. I guess I just feel like since I haven’t really had the best of experiences with doctors, why go through all the trouble of traveling, money spent, time spent if all they might do is tell me what all the other doctors have told me? Yes, I do realize that they just might have new information or insight, but I guess I’m just not willing to take the gamble.

I used to be an active, stay at home, homeschooling mom. I am still the latter, just not the former. I feel like I live my life pretending everything is okay. Why can’t people just understand that I feel like crap every single day of my life; it’s just the degree of crappiness that waxes and wanes.

So, I’m contemplating beginning at the beginning. Yes, starting over, but I just don’t know. I don’t know if I can take the emotional and mental stress of it all.

On the flip-side of the coin, (you’ll soon see that my coin has many sides) do I just continue to ignore the fact that I probably have a chronic illness??? Do I continue to wear more masks than all shows performed on Broadway combined? Do I just look in the mirror and repeat some mantra of some sort? As the title of my blog states, I am never hopeless, but that doesn’t necessarily mean that I don’t have really crappy days where I just don’t want to pretend anymore.

Place I'd like to visit willingly

 

Place no one ever wants to visit willingly



Update on Physicals

So Big Handsome and I went in this past week for our Free Yearly Physicals.

Our appointment was at 3:30pm. I called the office at 3pm to see if they were running on time. Of course the receptionist’s response was, “Yes.” We set out for our appointment.

Mind you, the last time I was there, they requested I pay $100 even though I told them that my deductible was met. They informed me that it wasn’t met, so I ended up paying the $100. A week later, I get my EOB in the mail that says “You owe: $13.78, proving that I had in fact paid my deductible already. I took the paper in and the receipt of my $100 payment and explained the situation to the receptionist. She took it to someone else then came back and told/asked me, “Yes, we owe you $88 (and some change), would you like me to put this toward today’s visit?” I was trying so hard to put on a smile and be nice. I so wanted to say to her, “What part of Free Yearly Physical do you NOT understand?” But, I refrained as usual. I simply told her no, we are here for our Free Yearly Physical (again, because she had already asked why we were there when I signed in) and asked her to credit my account because I would be making another appt. to come in at a later time.

We waited an hour in the waiting room, and then were called in only to wait another 30 minutes in the exam room before the doctor came in. I’m SO glad I called ahead of time to find out if they were running on time!! Seriously, pray tell, what is so damn hard about being on time?! I am on time, EVERY TIME! What part of “Are you running on time?”, do they NOT understand? Running on time to me means that when I make an appointment for 3:30pm, I, in fact ought to be called in a 3:30 pm. It really doesn’t seem all that difficult to me. I just don’t get it. I mean, yes, I understand that the dr. might be running late (I do appreciate the time they spend with me and Big Handsome), but don’t LIE to me and tell me the doctor is running on time when it is all too common for him not to be running on time. Just give me the courtesy of honesty for crying out loud!

Let’s just do some simple math, shall we? The office has about 6 exam rooms. There are three people (two doctors and a PA) to take care of patients. I would think that a normal person could do some simple math and figure out that 3 patients can be seen at one time. If the doctor spends approximately 30 minutes with each patient and we are looking at a 9am-5pm schedule, one doctor can see 2 patients an hour. Multiply that by 3 doctors/PA’s and you get 6 patients an hour.  Multiply that by an 8 hour day and the maximum is 48 patients a day. It would be fun to call and see how many patients they see in a day, I would hazard to guess that it is more than 48. I only say this because I’ve asked patients before what their appointment time was and have been told by many, the same appointment time as me. What they seem to do is to schedule multiple people at the same time to fill all 6 exam rooms and they seem to schedule appointments in 15 minute increments (even though they know that the doctor will spend at least 20-30 minutes with you). Again, just by doing some simple math, they are probably scheduling at least 96 patients per day. No wonder they are running behind all the time and that’s provided one of the doctors doesn’t get called for an emergency.

Anywho, long story short (well, kinda), we were in and out in two hours. No complaints about that. I will complain however about how they refused to take our blood in office (which didn’t really make a difference because I knew they would refuse and we hadn’t fasted besides, but as you all know, I love to complain and argue!) They blamed it on the insurance, I told them I had just spoken with the insurance and they had said that our blood could be drawn in office; they insisted my insurance wouldn’t allow it. I did call the insurance the next day and they assured me that my blood could be drawn in office. UGH! I asked for something in writing so I could shove it in their face next time, but unfortunately the insurance company said no, they have no such paper.

Again, people want to know why I hate doctor’s offices, dealing with appointments, lab work and insurance. It’s enough to drive a sane person crazy, and in my case, a crazy person, crazier!!

Big Handsome would never do this, ok, maybe he would. Funny thing though is when the nurse asked him if he was experiencing any pain, I piped up with “Yes, me, does that count?!”

Twenty Questions…and answers

Sometimes friends, family or people in general want to know what it’s like living with a chronic illness, or what my hopes and dreams are, or what I miss most. Here is a sampling of those questions and answers from my perspective.

1. What’s it like living with a chronic illness?

Well, I must admit that having somewhat of a diagnosis is nice, but I have to say that life as I once knew it is gone. I’ve had to go through a grieving process which I still believe I am in. I have learned the true meaning of “one day at a time”, sometimes for me, it’s one second at a time. I have had to try to find a “new normal” and that can at times be really challenging. I don’t want a “new normal”, I want my old normal. Heck, at this point, I’ll settle for half-way normal J

2. What have I learned through all this?

I have learned to appreciate the small things like waking up each morning, I’d rather that than the alternative! I’ve had to learn that, I am indeed, NOT in control anymore. I’ve had to learn to ask for help and rely on others, something I am definitely not used to. I have learned that I can and will live with this, and do it to the best of my ability.

3. What is the most disappointing news concerning this illness?

The most disappointing news is that there is no real prognosis. I have had to do much of the research on my own as many doctors in my area do not even know what POTS or Dysautonomia is, much less how to treat it.

4. What do I do to get out of a funk?

When I’m in a funk, I try to remember that while I cannot control my physical situation, I can control how I react and respond to it. I can choose to find joy and happiness in the things I can do. I try not to dwell on the negative, and sometimes that is so hard. I do admit to occasional breakdowns and many pity parties where I am the only guest L If I’m really in a funk (what most of us call a “flare”), I pray a lot, read, listen to uplifting music, meditate and try to rest through it.

5. What would I like to do if I was not ill?

Honestly, I’d be quite happy if I could take my teenage daughter to the nearest Starbucks, have a coffee and a day of shopping. I really don’t like to shop, but I know that that would be something that she would love to do, and I’d gladly do anything to make her happy. I would also like to enjoy life with my family once again. I would love to be consistent at just about anything. I would love to be able to drive…where I want and when I want. I would love not to have to rely on others so much. I would love to give Big Handsome a break for once.

6. What do I miss most?

I miss doing what I want, when I want the most.

7. What have I done that I never thought I’d do with this illness?

Start a blog. I really don’t think I would’ve started one if it hadn’t been for the hours spent in bed, online instead of out of the house enjoying life. I’m glad though, all the same. Something else I never thought I’d do after my illness was going on a cruise. My husband and I celebrated our 20^th anniversary on a Caribbean cruise and are looking forward to celebrating our 22^nd anniversary on an even longer Caribbean cruise this year. I took a bit to get my meds sorted out, but once I did, we had a wonderfully memorable time together. Our first cruise was really our honeymoon celebrated 20 years later as I was in college when we got married and didn’t have the time or the money for a honeymoon. I must say that it is such a blessing to be on a continuous honeymoon for 20+ yearsJ

8. What I think about the majority of doctors I have seen?

I think the majority of doctors, save my current GP are all complete idiots! I do have some bit of respect for the knowledge that they incurred through years of med school, but somehow, I find each and every one that I’ve seen to be severely lacking; whether it is in compassion, general bedside manner or just plain knowledge of disease and the body. I truly believe that everything happens for a reason. We are sick because there is a reason, an underlying condition. I think all too often doctors are only knowledgeable in treating the symptoms and not the illness as a whole, not treating us as a whole. If we don’t fit into their little box, or their med school books, well, we are SOL! It is really unfortunate and has left a really bad taste in my mouth.

9. What is the biggest adjustment I’ve had to make?

The biggest adjustment I’ve had to make is to learn to rely on others. I like doing things my way and I like being in control. I think someone upstairs  had something else in mind for me J

10. My favorite show?

I used to love medical shows, like House and the like. Now, I can’t even watch those anymore. I like to watch benign shows now; shows that I don’t have to think about, like the shows on HGTV. Since even little things set me off, I find it hard to watch murder and mayhem, medical shows, reality TV, etc. I admit that I do like to watch TV drama series though. I enjoyed “Brothers and Sisters”, that American Teenager one (can’t think of the name), British shows like, Bramwell, Downton Abbey, Doc Martin. When I watch something, I just want it to be numbing and I don’t want to have to think too much about it. Lame, I know, but when I have time to watch anything, it’s usually right before I go to sleep, so I don’t want anything too stimulating.

11. My favorite song?

 I just discovered Pandora and love it. I have new found favorites such as, The Fray, Coldplay, Daughtry, Nickelback. I guess they aren’t really new found favorites as I’ve always loved their songs, just didn’t know who or which band played them.

12. My favorite saying?

I have two favorite sayings: This too shall pass which I have tattooed on my inner left wrist to remind me of my late, beloved mother (she passed away 9-14-12). This saying is something she would always tell me when things got tough. She was a tough woman. A woman I admired and loved with all my heart. A woman that fought for seven long years after a botched hernia surgery. She went from being a relatively healthy, always vibrant woman (married to my father for almost 50 years, she passed almost one month to the day before their anniversary) to being an invalid on a feeding tube with only one lung; all because a doctor screwed up (I’ll have to save that story for another post). The other favorite saying is of course where I got the title to my blog from. It just came to me one day out of nowhere. I might be helpless at times, but I am never hopeless. Quite frankly, that is my mantra these days. With the love of Christ, I am never hopeless, and that is such a wonderful truth and feeling all rolled into one.

13. What do I do as far as work and career?

I began a career in Elementary teaching after college. I only taught a short three years before Big Handsome and I decided to enlarge our family. Since then, I have homeschooled my two children, now teenagers in high school. I’ve always quasi joked that had I had a job and my children went to school, I would’ve had to quit and homeschool them after my diagnosis anyway, so I skipped that whole step. I thoroughly enjoy teaching my children at home and wouldn’t have it any other way. They make me so proud!

14. Something you might not know about me?

Something many might not know about me is that I would love to one day open a coffee shop/bookstore. I would love it to be something along the lines that you see in movies, where there are shelves and shelves of books, an armoire with board games, and velvety couches and chairs all around and  people can just come in, relax with a good book, and a great cup of joe!

15. Something I really miss?

 I really miss driving…just going where I want to go, when I want to go.

16. It bothers me when people say…   

It bothers me when people say “Wow, you look great, have you lost weight?” First off, I’ve never really been overweight, so what are they trying to say?? I do take the compliment graciously, but in my head I’m thinking…”If I felt as great as you seem to think I look, I’d be on top of the world!”

17. The biggest surprise for me

One of the biggest surprises to me is that there are so many doctors out there that don’t know about POTS or Dysautonomia. I mean, how are there thousands of us on line with these same issues that nary a doctor can figure out? Boggles my mind!

18. What I’ve learned so far

 I’ve learned so far that you have to be your own advocate when you are diagnosed with an invisible illness. When there are few doctors that know anything about your illness, of which there are few, you have to research on your own and find things that work for you. I’ve learned that a good support system is essential and that friends and family might not always understand, but there are so many sites out there online with people just like me. That is such a comfort.

19. What I want most in life

What I want most in life is to gain control, or as much of it as I can with concern to my health and quality of life.

20. What I look forward to

I look forward to beating the odds!

I might be helpless at times, but I shall never be hopeless J

Life Is What Happens When You’re Busy Making Plans

Life happens when you’re busy making plans is something Big Handsome always says. It is so true at times. Before I got sick, I was a big-time planner. Practically everything I did had to be planned, still does to some extent, but I am slowly, painfully learning that life happens when you’re busy making plans.

When you’re diagnosed with a chronic illness and your life is turned upside down and basically what you used to do and be seem to be nonexistent; it makes it kinda hard to plan for anything. Sometimes the opposite happens and I tend to want to plan everything that is going to happen. This can be nearly impossible and can really wreak havoc on life in general.

I am basically and pretty much always have been a control freak. I like to know what is going to happen, when it will be happening, how long it will take to happen and when it will end. With chronic illness, those questions almost always go unanswered. This probably stems from my father who would always have every vacation planned down to our bathroom breaks (I’m not quite that bad). I’ve had to learn to “go with the flow” which is NOT easy for me in the least.

We have family members that are quite spontaneous. It drives me NUTS!! They make plans on the spur of the moment that include us and I am now finally comfortable to decline most invitations. My problem comes in the form of resentment when this happens. I guess I’ve always held to the idea of, “A lack of planning on your part doesn’t constitute and emergency on my part.” I realize this is a whole other story; I’ll probably save that for another blog post in the future.

Even still though, I try to control things in my life. I don’t think this is too crazy, because in the life of a person with chronic illness, there is so much that we cannot control, I feel the need to control the few things that I might just have control over.