Mama Sick

See Health Update # 1 for more background.

This week, though technically still not over, has been tough.  I’ve had three migraines in four days and have fallen really behind in…life.

I had an Orencia treatment today and in my latest bloodwork, my Vitamin D level has still not risen. My Rheumatologist said the Hyperparathyroidism is being caused by my low Vitamin D level.  I told him that my Gastroenterologist was doing further testing for Celiac Disease and he said that was good.  He also recommended I see a Endocrinologist as he said he no longer felt comfortable in treating me for the Vitamin D problem and in dealing with the other ways an Endo would get my level up.  I don’t even want to know what that means!  He gave me another doctor’s name.  I’m hoping she/he takes my insurance because so far I have been unsuccessful in finding anyone who does take it who has been recommended to me.

The only good news was that I gave the doctor my paperwork for my disability and he seemed very pleased with the work I had done on it as to make it easier on him when he filled it out. I’ve worked very hard on my disability application and am gratified to be finally starting to see results.  I am working with someone I met on the message boards of But You Don’t Look Sick who believes in doing a lot of work prior to actually applying, resulting in a quicker response and a higher positive response.  It has taken me more than six months to do this as I have had to fit it in between being sick, household responsibilities, caring for my son and my 12 + hours of sleeping!  I won’t know what to do with myself when it’s finally all done and given over to Social Security!

Another 3 day weekend ahead for us with Tyler’s daycare being closed tomorrow for the holiday.  I am even more anxious because of the deficit I have been in this week.  We have plans to go to a barbeque on the 4th with family.  I really like for Tyler to interact with my family, especially all of the kids!

Hope everyone’s holiday is explosively great!

My husband, Grant, loved Harold and the Purple Crayon by Crockett Johnson as a child and was determined to pass on his passion to Tyler.  And for better or for worse, he has succeeded.

For those unfamiliar, “The Harold” series revolves around a boy who can step into an adventure by drawing with his purple crayon.  The 50th anniversary of the original book was published in 2005 and a year later Grant bought Tyler four of the books…while he was in utero.  Grant liked reading the books, among others, to Tyler while he was still in my tummy.

We brought Harold back into Tyler’s life a few months ago.  HBO is doing an animated Harold series, and while not exactly being true to the book, is still pretty imaginative and entertaining.

Tyler’s first reaction to Harold was to immediately take a crayon to our walls.  Now he enjoys going “for a walk in the moonlight” with the biggest purple crayon we could find.  Actually we’ve had to buy several as he often loses or misplaces them!  We even got one “autographed” by Harold.  “To Tyler from Harold.  Keep drawing.”  He colors everything purple and all his drawings are purple. We often must try to quiet his protests when we tell him he can’t take his purple crayon in the bathtub, the potty or to daycare.

But liking Harold hasn’t really been a bad thing for Tyler.  There are some major 50 cent words such as “ermine”, “edifice” and “Uranus” in the books, and it really has brought out some great creativity and imagination in Tyler.  We’ll just refer to this as his “purple period.”

Grant and I escorted Tyler to a birthday party today.  One of his friends at daycare had turned three. We drove up to what looked like a mini castle.  The birthday boy, “Jack” had just woken up from a nap and was crying to his father, “Too many people.”  There were over fifty with tons of kids.  Jack was pretty freaked out.

The party had a children’s “fun fitness”  instructor outside with Kidzbop  blaring.  Whoever thought of Kidzbop should be shot.  I looked out over the deck and she seemed like a mile away.  I told Tyler to go have fun and I would meet him.  He played a few minutes and then noticed a mega swing set half a mile to our right and made straight for that.  Before I could catch up with him he had scaled the climbing wall and slid down the slide.  What I didn’t know was that at the bottom of the slide was a very muddy landing.  Tyler’s butt was completely covered. Oh well, no use crying over spilled mud.  Then he slid down on his belly, covering his shirt.

Another boy from daycare, “A.J.” was enjoying the swing set too, as well as the leaves and plants and dirt in the yard.  I said to A.J.’s mother, “We live in an apartment so Tyler doesn’t get much exposure to swing sets and backyards.”  She said she did too.  It was nice to find at least one other woman who probably felt like she didn’t belong either.  I looked around the property.  You could fit at least two more mini-castles on the land.

Suddenly, the birthday boy came running over to play with A.J. and Tyler.  Seconds later his mother said, “Jack, come back over to the fitness instructor.”  Jack started crying.  She then dragged him back as he was screaming.  “Jack!  You have to come back to your party!”  Fuck lady, the kid is three-years-old and this IS his party!  Why can’t he do what he wants to do?

The party favors they gave out cost more than the gift we had given him.  Plus, I had to borrow some of Jack’s clothes because Tyler was so muddy…and I don’t think I can get the stains of birthday cake and food off the shirt he was lent.  They lost money on us, big time.

A few days ago I realized that Tyler’s daycare was going to be closed tomorrow for a Teacher In-Service Day and the anxiety started because that meant a three day weekend with my son home. And then the guilt started, and the fear.  When Tyler is at daycare I can sleep the 12+ hours I am currently requiring to function at any level.

Of course, this is impossible when he is home.  Very often Tyler will not nap on the weekends. Usually by Saturday afternoon or evening I am having a fatigue meltdown and on Sunday night I am in a cycle of pain that seems like it will never stop.  Often on Monday I am too exhausted to go out to even a doctor’s appointment.

This has been going on for over a year since I’ve had Lupus and especially since the chronic pain in my calves, for about six months.  My husband will wake up with Tyler and I will go back to bed after changing him, and giving him some milk or snack.  I then set my alarm for about 9:30.  It still isn’t enough.  I wake up, make a real breakfast and then unless he naps I am up for the day.

Sometimes, my husband isn’t feeling well either and we don’t get out with Tyler at all.  Those are the worst days for me as a sick mother.  Hopefully the warmer (sunnier?!) weather will make it easier to at least get outside, even if we just blow bubbles or draw with sidewalk chalk. Our apartment’s pool is open, but I wonder if I will have the strength to be able to keep up with him, and then there is always the consequences of overexerting myself.

I wish I was exaggerating, but I am not.  Weekends are Hell for me and now we have a three day one.  It is so hard for me to write this but I know I am not the only chronically ill mother who feels this way.  It’s not about will or desire. When I was well, I loved spending every single second of my free time with Tyler.  I was endlessly fascinated by him and enjoyed taking him to the park, playing with him, singing to him, reading…whatever he wanted.  When I was well and working I treasured my weekends, holidays or any days off with him.  Now I am home all day and he is in daycare.  On the weekends he misses me so he is very attached to me and it is hard to lie down, especially when he is too young to know what is going on with me.

I hate that my diseases are ruining the precious times I should be having with my little boy and I wonder how long this will continue?  Tyler and I deserve a break.

Most chronically ill people see a few doctors per week, myself included.  Three weeks back I had gotten a copy of my latest blood work.  It still showed that I was Vitamin D Deficient and, a new one on me, that I was Calcium Deficient, diagnosed as borderline Secondary Hyperparathyroidism. That was a new one on me so I researched it and said it was when the parathyroid glands in your neck produce too much parathyroid hormone because your calcium levels are too low.  Some of the causes include malabsorption problems or kidney disease or kidney failure.

First off, I was angry at my Rheumatologist.  Borderline or not, they should tell me about something like this, especially since Lupus can attack the kidneys.  I was also angry at myself. I had become too complacent.  I had not asked for copies of my blood work in months. Never trust that a doctor is going to tell you everything, always get your own paperwork. Or, if you’re awaiting test results and don’t hear back, call, don’t assume everything is okay.

Due to my Vitamin D deficiency, I was scheduled to see a dietician.  I showed her my blood work and she said I should see an endocrinologist, so I am in the process of finding one who takes my insurance.  She mentioned Celiac Disease.  I had tested negative for this in my last bloodwork.

I saw my Gastroenterologist yesterday.  I do not advocate this but I have not tended to my Ulcerative Colitis in two and a half years!  This is because I have too many other diseases to attend to so I let the UC fall by the wayside since it has not be bothering me.  He did not like the Vitamin D Deficiency and also mentioned Celiac Disease.  I told him I was negative for it but he said the test the Rheumatologist did was like one test and there was a whole panel for Celiac that he wanted me tested for.  He also could tell by pulling down my lower eyelashes and looking under them that I was anemic, which is another Celiac symptom and could explain some of the other issues that I have been having.  Except Celiac symptoms overlap with Lupus symptoms and perimenopause  and Fibromayalgia, and so on and so on.

I really don’t want to have Celiac Disease.  Mostly because it requires a Gluten Free lifestyle, i.e. no Ben & Jerrys’ Ice Cream.  Plus I am happy with my other eight or so diagnoses.

He also scheduled me for a colonoscopy in August.  Meh, I have been having them for over twenty years and am looking forward to the anesthesia.

Of all of the guilt and worry disabled or chronically ill parents have over whether or not their children will turn out alright or hate them for life, from what I have read and heard from other parents, it seems their kids turn out just fine and in fact can turn out to be more compassionate and empathetic than a child with “normal” parents.

I see that already in Tyler, even at his young age.  At just a little over two-years-old, if it looked like I had too many things to carry along with my cane, Tyler would tell me, “I carry, Mama”, and he would take his cooler bag which contained his sippy cups.  Pretty heavy for a two-year-old but he would insist, happily carrying his load.

There’s been a few times where Grant would have a forgetful moment and rush out of a place, leaving me with more things that I can manage.  Tyler would just look at me and pick up what he could.

I’m so proud of my little gentleman.  Even though he doesn’t know that I am sick, cannot grasp something like chronic illness, there is already something there that tells him to help his mama.  I hope he will continue to grow into a respectful little boy and young man who will not only help me but others who need it as well.

I’m over at New Jersey Moms Blog.  Take a look there for something a little different.  Thanks!

A few days ago I read a post by Nancy on her blog One Stop Boy Shop lamenting that she was not able to eulogize her father at his funeral many years ago.  I think it is extremely admirable that one can pull themselves together enough to be able to speak at their parent’s or sibling’s funeral, but I certainly could not do it either.

But Nancy did give me the inspiration to do one here, right now, although my father died almost six years ago.

My father had me when he was forty-seven years old, and I was his first of two children. Although this is more common now, nearly my whole life I was mistaken for his grandchild, and my mother, twenty-one years my father’s junior, was often mistaken for his daughter!

It was merely amusing to me most of my life because I had the greatest father a child could have.  I think having me late in life made my father a very selfless parent.  He was extremely hands-on in his parenting, which was still pretty rare back in 1969.  I have memories of him when I could not speak yet, making funny faces at me.  I remember sometimes not being able to sleep, or my brother and I crawling into my parents’ bed while they were still up.  My mother, complaining as she had stayed at home with us (I can’t blame her), and my father, protesting, “But I haven’t seen them all day”.

My dad would give me the last piece of pie, the last cookie…If only one of us could do something, I would do it, or he would always give me the extra turn.  He had the patience of a saint as he would help me pick out which same doll out of a dozen was the best, and later, would walk around the mall with me, letting me try on as many dresses as I wanted.

He had a great dry sense of humor, loved politics, history and baseball (the Yankees).

My father battled with prostate cancer twice in his life, once when I was in college, and then ten years later.  I was so grateful he was able to walk me down the aisle and have so many regrets that I did not give him a grandchild while he was still alive .

For a time we battled our sicknesses together.  He his cancer, and I my Rheumatoid Arthritis. The whole time he was sick, when he was far sicker than me, he never stopped asking how I was doing, how my pain was.

At my dad’s funeral, one of my cousin’s threw in Good & Plenty candies.  She told me that he always used to bring her the candy every time he took her out.  I realized then that my father, not having had children of his own for so long, was a great uncle to many of my cousins who were older than me.  I envied them their own special memories, and that they had known his so much longer than I had.

My father’s name is not a name you would know, but those whose lives he touched were made better by knowing him.  And I am blessed to call him my daddy.  I still feel our close relationship even though he has passed on, and when the time comes, look forward to being able to hug him again, and maybe even put nail polish on his nails as I did when I was a tween and couldn’t decide which color I wanted, for old time’s sake.

Today one of my best friends had a baby boy, to go along with her almost three-year-old daughter.  She and I were pregnant together for her first time, and my first time and my last. A few months before Tyler’s second birthday I was diagnosed with Lupus, although I had been becoming sicker months before.  I did have a time of good health where I naively thought that I had been as sick as I was ever going to get and my husband and I decided to try to have a baby.

I conceived easily and my diseases obediently stayed away.  Now I can barely handle the care of my one child, much less think about ever having another.  Because I have been so ill, I have been unable to work for over a year, so having another child would be financially impossible as well.  I don’t know what is to come for me and I don’t know how Tyler will feel having a disabled, sick mom.  Even if finances were good, for me, it wouldn’t be right to bring another baby into my situation.

It’s a different kind of feeling, I think, than being infertile.  You can make babies, you just shouldn’t. It makes you so angry that chronic illness has taken away from you one of the greatest powers a woman has.  I always pictured myself with at least two children.  I was one of those women who wanted to have children ever since she was a child herself.

As I was writing this, an email with pictures of the new baby came.  As I was watching the slide show, an up way too late Tyler came in and I showed him the pictures.  He only wanted to see the ones where his little friend was in.  I told him that now she was a big sister. “Mommy, your nose has boogies.”  “Oh, thank you, I’m sorry,” I said, reaching for a tissue.

I got up with him and put him to sleep by singing him a very  long lullaby that I made up for him while he was a newborn.  As I sang, the tears ran down my face.  Tyler is still my baby and I know I am lucky that I had my ONE, but sometimes I do wonder, what if?

Today was our family’s Day Out With Thomas at the Strasburg Rail Road in Lancaster County, PA. Since it was a trip where the tickets were bought ahead of time, I was really anxious about how I was going to feel today.  We had rented a wheelchair but there is still the possibility of pain, and even fatigue, even though I am being pushed around for most of the day.  I had thought about it for days in advance, praying that the day would go down in all of our memories as a good time had by all and not a day where my illness ruined it for me.  I wanted to enjoy the day too, you know?  Even though my main concern is always Tyler, I am a kid at heart and I really like this kind of stuff!

It was so good to get out of Suburbia, NJ and into the rural farmlands of Lancaster County!  Tyler had never even seen cows or horses so when he wasn’t sleeping he enjoyed the two hour trip. Just being in that part of the country where antiques, farms and Amish abound makes me wistful that I lived there; I just love that stuff!

Tyler had his first train ride on America’s oldest short-line railroad.  Probably the only downside of the day was that the train’s whistle was so loud we had to keep our hands on Tyler’s ears for most of the trip.  The whistle was really loud!

Seeing Thomas pull into the station I think was the highlight for all of us!  Tyler could not believe that the REAL Thomas was here and we were going to ride in him!  After the train ride, Tyler got to take pictures in front with Thomas and his “rolling eyes”.  We also saw Thomas done completely in Legos and a preview of Legos and Duplos of Thomas and Friends that is supposed to be coming out in August.  The gift shop and buying photos (how can you not?) took up the rest of our time.

Tyler, at just two-and-a-half, still doesn’t have a lot of endurance at a place like this, so he and I were pretty much ready to go home at the same time!  I took my regular pain meds and I was really tired and had some nausea and dizziness but the fact that I am even up and blogging about this is a huge victory for me!  The worst part of it was getting up in the morning, as it usually is.

I am so thankful to God that I could enjoy the day and see the huge smiles and grins on Tyler’s face.  Wheelchair or not, sick or not, I was just a Mom like everyone else there, taking their children to see Thomas The Tank Engine.  I know I will look back on this day with wonderful memories and the unpleasantness I felt will fade since it was greatly outweighed by the fun we all had.