Mama Sick

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Pissy Patti, The Party Pooper

I am one of 4 girls and the youngest to boot. My oldest sister has lived in another state for several years so it was a grand thing to have her move back home. We would finally get to spend Christmas together.Except by the time Christmas got here we were all so fed up with her attitude and behavior it was nearly more then we could stand. She is without a doubt the most gossipy judgmental person I have ever met. So many times we have bitten our tongues for mom’s sake to avoid causing any more drama then she already does. Christmas Eve was just the icing on the cake for many of us.

After a season of her following mom around wherever she went, when my sister was not at work, Mom had had just about enough. If mom went shopping the sister went too. Not to shop mind you but to snarl her nose up at things mom attempted to find for her for Christmas, and then comment on how much she was spending on every one else. If mom got someone another present my sister was quick to point out that would make the gifts uneven, if mom bought it anyway she would literally complain all the way back at how much mom spent on others. I. mean. everything.

Now keep in mind my mother is providing her a home, she is not helping with any bills, yet she is constantly complaining about electric bills, water bills, gas in the car, none of which is costing my sister a DIME. She would try to tell mom when to go to bed, when to eat, when to go the whole 9 yards. What she doesn’t understand is the more she does that to mom, the more mom is determined to spend more. Just to spite her.

So Christmas Eve comes and we are all at Mom’s house and the Grumpy Gus sister is doing her utmost best to make everyone miserable. She refuses to crack a smile. She tries to make mom do things. She is getting snippy with my kids, so they left and came back home ( across the driveway). She complained about the noise, the mess, the general idea of ANYONE having any sort of fun. When it came time to open gifts she was right behind everyone, except my kids cause she was too busy blocking them from getting theirs.

Now my mom had gotten my youngest son a point card for the Wii and it was not under the tree. When my son became upset because he opened his package and only had pjs she kept shooting him dirty looks and telling him how ungrateful he was. That he was too old to act like that and too big for toys. Now my son is only 11 so no he is not too old for toys, and secondly mom had already told him she had him a toy type thing for Christmas. She had already succeeded in running my middle son off because she kept blocking him from getting to his gift that was being handed out, he asked her 3 times politely to move so he could retrieve it, and the person handing it out could not see him behind her and was hollering over and over for him.

Finally when my son said, ” Aunt Grumpy you are kinda in my way and would you please move?” She got in a tizzy. Never mind that 3 people were trying to tell her and mom that he had already asked 3 times before that, she heard that and complained to mom like a 3 yr old that he had been rude to her. Let’s overlook that she had been anything but kind to him the whole night. She had made smart remarks about his plate, what he was eating, wearing and how he was playing too loud with the little ones. That caused mom to get mad at him, because Grumpy made sure mom didn’t hear everyone else saying he had already asked 3 times and she had ignored him and that if she heard him say that then she had heard him before and just was rude and refused to move. So he got his package and came home.

She waited to open her gifts till everyone else was done and she could not even SMILE. It was like her face would crack if she did. Not even a THANK YOU to anyone. I had finally had my fill..

I said, ” Ya know considering you didn’t raise your kids you sure have plenty to say to us about ours and how rude they are. Well from were I am sitting you are ruder then they ever thought about being. If you can’t even be civil and ACT like something is nice then I won’t make the mistake of getting you something again!”

Her response, ” Well when you spend so many years of Christmas alone you just don’t get excited about it. It’s more junk I won’t use. I just have gotten used to opening it alone and tossing it to the side cause no one is there to share it with so why bother.”

I ALMOST felt sorry for her then I said, ” Well YOU chose to live so far away, so being alone is on you. Even if YOU don’t like Christmas WE do and it would be ever so nice if you could PLAY nice instead of taking notes about what everyone has done or said so you can talk about us to everyone else the way you always do.. Oh but wait you don’t gossip.. Riiiighhtt”

I swear if I had had my hands on some coal she would have gotten it ASAP!

Inspired by Mama Kat’s Writer’s Workshop.

I have been sick since I was a teenager, and in my twenty-five years of being sick I have learned to become quite an advocate for myself.

When I was in my early twenties nothing my gastroenterologist was giving me was working for my Ulcerative Colitis.  He wanted to put me on steroids, saying that was all that he had left to give me.   I had an instinct that going on steroids was not for me.  “There must be something else you can do for me”, I insisted.  He then remembered that there was a study going on for a new drug at a university hospital for Ulcerative Colitis.  I left this doctor and joined the study.  The drug helped enough that, while I wasn’t able to complete the trial, it did put me in remission.

In January of 2003, my feet started to swell up so badly I was icing them down up to five times a day, including overnights.  I went to see a Rheumatologist who was clueless, as a child could tell I had the classic symptoms of Rheumatoid Arthritis. He was under-medicating me as far as treatment and pain.  He just keep giving me NSAIDs when my condition deserved something far stronger.

As luck would have it, I was a recruiter at the time, recruiting Rheumatologists!  I got professionally friendly with one of my recruits and told him about my symptoms and this doctor.  He told me that I was not getting good care and he referred me to someone in New York City.  It required me to take the whole day off of work to get there, but I called up my doctor’s office and asked for all of my records.  When they asked why I simply told them I was switching doctors.

I made the painful trip to the New York doctor who took ONE look at me and said, “You have Rheumatoid Arthritis!”  He immediately started me on the latest, most aggressive treatment at the time and prescribed strong narcotics.  He believed in the horrific pain that I was having.  I credit him with having little permanent damage and deformity in my joints.

Unfortunately, the greatest doctor I have ever had passed away.  He was a wonderful old man who literally practiced and kept up on the latest rheumatological trends until he became too ill.

Finding a good Rheumatologist is extremely difficult, but I felt that my disease was under control and I was capable of managing it, so I wasn’t extremely particular about who I chose next.  I picked someone closer to home.  This doctor never really believed I actually had Rheumatoid Arthritis because I was so well controlled.  But he gave me my biologic and my pain meds and that’s all I cared about.

But after seeing him for a few years, I began feeling sicker.  I had tremendous joint pain but my joints were not swollen.  I was exhausted, falling asleep during my commute and taking large amounts of pain meds just to be able to work.  When I told him how I was feeling he would look at my joints and point out that they weren’t swollen.  “You look better”, he said.  I had one positive ANA which was new for me.  “Let’s keep an eye out on it”, he said.  In addition, my medication had stopped working.

This was ridiculous, I know when I’m getting sicker and I don’t need any blood test to tell me how I feel!  So “I fired” this doctor and on the referral of my Primary Care Physician found a new Rheumatologist.  She listened to me for an hour and examined me.  She suggested we send my blood work out to a laboratory in California that specializes in analyzing blood work for Auto Immune Diseases.  It was after that I found out I had Lupus.

The “moral” of this story is that God forbid you ever get sick like this, or already are, is to trust your own instincts.  There are good doctors and bad doctors.  A good doctor will believe you and treat you according to your symptoms, NOT your blood work, which can often be inaccurate.  You can also be starting to get sick and still have normal blood work, or have normal blood work and still have Rheumatoid Arthritis, Lupus or another disease that they do not have blood tests for, yet.

Here’s to your health!

I read The Swan Thieves as a member of the From Left to Write book club.  I was given a free copy as part of the book club.  This post was inspired by this book.

The Swan Thieves, by Elizabeth Kostova, is the story of a famous painter, Robert Oliver, who attacks a painting in the National Gallery of Art and is put into a psychiatric ward. When Robert maintains a state of silence, his psychiatrist, Andrew Marlow, must investigate the artist’s world to treat him, which includes the women in his life.

The Swan Thieves is a story  about obsession.  It does not specifically delve into Robert’s diagnoses and so I will not delve into “my Robert’s” diagnoses, that of my husband.

As I read the book I recognized my husband in it and wondered if this amazing book would be good for me.

Grant has been ruled by obsessions of one kind or another since his teen years, but I will only talk about the ones that he has gone through since we have been married. For a long time, Grant was obsessed with buying posters, statues and trinkets of cats, particularly of the Egyptian cat goddess, Bast. He had hundreds of pieces. This lasted for many years, after which time he realized that this was stupid and has given much of it away to fellow cat lovers.

Then he got into the cats of Andy Warhol. Cards, posters, pocketbooks (?), scarves.

Now his latest obsession is with “time”, watches.  He probably has about a hundred watches. He doesn’t wear them, he just collects many different kinds.

Those who know me know that my family can’t afford what has added up to thousands of dollars, sometimes as much as a thousand dollars a month.  When I was working it was okay, and although he’s worked on it, in therapy and taking medication, he still can’t stop.

Why do I stay with him?  Because this truly is a part of a his mental illness and many people have this symptom.

He is not a bad person.  He has a disease.

Unlike Robert Oliver, I know where he is all the time and I know and understand his obsession.  He is good to my son and I, and is in fact a bit overzealous with buying for my son. He gets me presents, even though I don’t want him to, but deserve it.

Despite his obsessions, he loves my son and I, and is being the best son and father he knows how to be.

Please don’t be angry or feel sorry for me, because I don’t, and I am the one who chooses to love him.

It’s looking like 2011 may prove to be a better year than I had expected.  I got a letter from my lawyer today that within the next few months I will be scheduled for a hearing!  I don’t know how long this will take but at least we are moving along!

Also, Grant and I have found a loop-hole in accessing some funds that we thought we could not get without penalty.  The money should keep us afloat for a few more months while we wait.

Luckily, I’m feeling good and sick, ha, ha!  I just hope I can stay that way.  I think it is ever person’s fear that she or he will suddenly have a miracle cure or suddenly not be sick any more when she or he goes before the judge.  But I have been pretty consistent for three years now, a long stretch for me.

I know it takes several months to get your first check which is made up of your back pay but I feel confident that some family member would be willing to loan us the money until that comes in.

Grant’s application for disability application continues to go well.  Who knows? Maybe this will be the year of the Disability instead!

Dare to dream or hope?  Things have been so bad for us for a straight four years now that it’s almost hard to believe something good might finally happen for us.

I know all of your prayers and good thoughts have helped.  Please keep them coming!

Inspired by Mama Kat’s Writer’s Workshop.

Well I have a lot of stories to pick from so I’ll just start with the “best” one and keep going until I think this post is long enough.

Before I was a sick, married, mom and lady, I had, uhm, quite the “youthful indiscretions”. They would surprise you, they might change your opinion of me.  But this one won’t, or shouldn’t.

In my college days and early 20’s I was quite the drinker.  Not an alcoholic but of the thinking “Why would you drink unless you wanted to catch a buzz”? crowd.

It was July 4th weekend around 1994 on Long Beach Island (sorry, my hyperlink is not working, LBI isn’t exactly the Hamptoms, but it is a fairly nice resort town in New Jersey). My friend had invited me over for a weekend of partying.

Unfortunately that week I had broken up with my boyfriend of five years, for good.  I was a mess.  “That is an especially good reason to come”, she said.  “Forget about him!”

And so I did.  Everyone who knew me and even those who didn’t, she would tell my story to, and everyone who knew me and even those who didn’t would buy me a drink.  Maybe eight drinks, maybe a dozen, who knows?

Needless to say I was exceptionally drunk.  Whatever time we packed it in, we went back to her brother’s house, whom he shared.  I was inside and felt like, “Uh-oh, I need some air…now!” and proceeded to gracefully throw up off his balcony.  In my state of mind, that seemed like a good place, on the ground, no clean up needed!

And then…it was morning.  I woke up in my pajamas with an unknown guy in bed with me who gave me a dirty smile and said, “You were great last night”.  He was kidding, right?! Somehow I had put my pajamas on, taken out my contact lenses and gotten into a bed with a man, or was it the other way around? Don’t worry, I could tell I had not had sex, I could just tell, ya know?

I did, however, have the worst hangover ever.  I shakily showered.  My friend’s brother said to her, “Which one of your friends threw up”?!  I confessed.  “You got it all over my neighbors backyard ,they are so pissed off!”, as he was hosing it away.  It has seemed like such a good idea at the time…

We all went to brunch.  I could not look at food.  Seriously, I had to wait outside.  Our plan was to spend the day on the beach but my plan was more like I spent the day in bed.  My friend was so angry at me, our friendship was never the same since.

I was hungover for THREE days.  After that, I decided my youthful drinking days were over.

Well will you look at that, I guess another drunken story will have to wait for another reason for me to post one.  Thanks, Mama Kat!

Fellow chronically ill, healthy and those simply passing through readers, my state of the new year is weak.  (Thundering silence)

No, seriously folks, I’m going to tell it like it is.  2011 is looking to be the year of the bankruptcy for us.  We are over 30 thousand dollars in debt and have a little over five thousand dollars in savings left.  You do the math.

Our parents help us, we both receive some income from our freelance jobs, but it simply isn’t enough and I am having to draw out a couple of thou from our once considerable savings nearly every month to help make the bills.

I’m really scared because I don’t know where I am going to be in a few months.  To quote Scarlett O’Hara, “I can’t think about that right now, if I do, I’ll go crazy…”  I’m scared because in a few months I will be rocking Tyler’s world.

A couple of things could save us:

1. Winning the Lottery (unlikely!)

2. One or both of us getting our disability SOON, and then perhaps taking out a loan from our parents until we receive our back pay.

But we really only have a few months left.  Every day that goes by brings us another day closer, I HATE 2011, I did not want it to come.  I did not want to write this post, it is so hard, I do not want tears to roll down my cheeks as I write this.

Please don’t for a second think I am asking you for help, (unless you’ve got a spare hundred thou or so that you’re not doing anything with) that it is not my intention at all.  This is just my honest portrayal of the life of a family whose lives have been wrecked by illness.

I will ask you for your prayers, good vibes, karma, or whatever it is you are into.  But I really feel like I need a miracle.

If you made it this far, thank you for reading.  I know it was pretty hard to read too.

Thank you.

Thanks to At Things I Can’t Say:

Normally, when Grant and I are faced with a holiday break, even if it is a three day weekend, we have an “Oh my God” attitude towards it.  We adore Tyler but caring for him usually wears us out and by the last day, for myself at least, I feel like death.

I was really scared of what this nine day Winter break would be like, especially because I have been doing worse than my usual crappy self lately.  But having Tyler home was, for both Grant and I, a joy.  I was homebound the whole time and Tyler only went out a couple of times, but, like us, he enjoys being at home.  When we are out, after a while he usually asks when we can go home.

He enjoys staying in his pajamas and watching t.v. and playing, and now he is getting to the point where he can play well on his own.  We all enjoyed watching one of his Christmas presents, all of the episodes of Spider-man from the ’90s!  He has turned us in to Spidey freaks!

Tyler is starting to get used to the fact that mommy needs to rest and sleep more than he does!  Grant helps out a lot with him too, allowing me to sleep in and nap, or sometimes go to bed early.

And Tyler is turning into…a little person!  You can actually have a conversation with him.  We had lots of fun too, playing games, reading and snuggling.

When he went back to school yesterday I never thought I’d miss having him at home with me so much.

Of course I can never get anything done with him home, so I suppose he’s got to leave sometimes!

Having not slept well at naptime, I was exhausted.  I laid down at about 8:00 and told my husband to wake me up at about 20 minutes until midnight, so I could listen painfully to Dick Clark’s attempt to host his New Year’s Eve show.  Why do I tune in to watch his struggle?

I basically just laid in my bed listening to The History of Howard Stern, uncomfortable because of my pain.  I could hear Tyler jumping around and playing, the Energizer bunny.

I got up at about ten and got up on my computer.  Grant and Tyler were watching DVDs.  Tyler was getting a bit tired so I said “Why don’t you just lay down on the couch and we will wake you before midnight so you could celebrate”?  He feel asleep at 11:00.

We tried to wake him up at about five to midnight.  “Tyler, do you want to yell Happy New Year and watch the ball come down”?  He would sit up and then fall back to sleep on the couch.  He was unshakably asleep for the night.  Poor Tyler.

When it turned midnight Grant and I drank sparkling cider and kissed and then we went over to Tyler and whispered “Happy New Year” to him and each gave him a kiss.  Grant carried him to my bed.

I said my usual New Year’s prayer to God, Jesus and my father that this would be a better year for us.  Basically the same prayer I say every year.  But that is for another post.

We went to bed and when Tyler got up at 8:15 this morning he was so mad.  “I missed it?!  I missed the holiday”?!  I had to show him the 2010 calendar and the 2011 one and explain to him that today was a holiday, all day.  He just missed the beginning of it.

Hope everyone had a great New Year’s Eve!

Grant and I are wondering whether to keep Tyler up to midnight for the first time to celebrate the coming of the New Year with us.  I can’t make him take a nap.  Or we could put him to bed, of course, and wake him up when it comes close to 2011.

But what about me?  The woman who has been going to bed at 7:30?  Shall we do the same for me?

Asleep or awake, big celebrations or quiet ones at home, I wish you all a Happy New Year, and one as pain free as possible.

I have been having a pretty tough time lately.  As much as I tried not to over do, it doesn’t take much for me to do that!  The fatigue is ever present and my Myofascial Pain and Costochondritis have started to flare, along with increased joint pain.

Christmas was at my house thankfully.  I could not shower or get out of my pajamas. My mother stayed with me for a few days and my brother and his wife were over Christmas Day and they helped out.  I stayed in a recliner with a blanket wrapped around me.  I hadn’t felt that sick in a long time.

My mother left today.  We got along well, but had a tiff over the phone when she called me to let me know she had arrived home safely by bus and train.

The reason my mother left early is because she wanted to rest tomorrow so she could be ready for work on Friday.  Except, my mother doesn’t work, she volunteers, at a rest home, which is kind of ironic since she’s almost there herself.  (I know that’s mean but I’m angry here) I have asked her many times not to refer to this as work.  She doesn’t get paid, she won’t get fired for not coming in, and if she got too sick she just wouldn’t volunteer any more and this would not affect her income.

It is insulting to me, because my husband and I really can’t work and we are in severe financial trouble because of it.

So on our phone conversation, she mentioned it again and we had the same argument.  “These people need me”, she said.  “Mom, I need you, I’m very sick and so is my husband.  You are volunteering HERE!”

“I’m sicker than these people”, I continued.  “Oh, I don’t think so”, she said.  “Mom, they’re just old!  They are not sick!”  And even if they are, it’s the normal order of things.  Sick and old go together.  People sick in their teens, 20s, 30s and 40s (all me, throughout my teen years and increasingly worse, and others like me) is not.

I dropped it.  She is never going to get it.  Tonight I can hardly stand and we will probably have to order out, again, which is something we can’t afford.

Thank God for my beautiful son who makes going on worthwhile.  He is more sympathetic and compassionate than my own mother.  If only he could cook.