Mama Sick

Although my son is going to be three-years-old in two months, I still rock him to sleep.  It is a ritual that has so much meaning for me.  If I’m there, it means I wasn’t feeling too sick or exhausted not to do it, so I feel so grateful to God when I can do it, which is most nights.

How much we talk depends on how tired Tyler is.  Sometimes we say prayers, with he and I naming our family members and then I let him bless what he wants, his friends at school, his teacher, or sometimes pizza and Diego and Curious George.  I used to sing to him but now he insists on singing with me, which, although amazing, isn’t conducive to sleeping!

I always thank God for giving me the most wonderful child in the world, how blessed I feel for that, and I ask God to make me the best mother I can be.

Sometimes I get frustrated, trying to get him to be calm or sometimes I start to get fatigued during it and feel I have to hand him over to Grant.  But when he’s tired, when it’s right and he fits perfectly in my arms, we rock together and there is no more pain, no more worries about money or where we will be in the future.  There is just…peace.  Peace for my son and I. Once again he is that small baby who melts into me and I am that new mom and a whole new adventure is ahead for us.

That’s why I am still rocking my baby.

We took Tyler to the pediatrician for his ears today and the doctor said they looked great.  No infection, no water or fluid, totally fine.  She said that sometimes normal things to us can sound very strange to children, such as an occasional ringing of the ears.  Tyler is already focused on his ears from the hearing test he has already gone through and she says that we should not ask him about his ears any more, even if he touches them.  That if he is in pain, he will tell us and we don’t want him making up things that he thinks we want to hear.

I still feel…uncomfortable about it.  I wish we didn’t have to wait over six more months for Tyler to get the hearing test with the headphones to find out if he really does have a hearing loss in one of his ears.  Who can help but focus on it?  Today alone there were two incidences where he was panicked from hearing a sound; a car alarm and our neighbor’s child upstairs practicing his drums.  He gets this look in his eyes of panic and then he runs to us crying, or is just silent, in shock with fear.  Six more months to find out whether he is losing his hearing, since some sounds are too loud to people losing their hearing, or if he is just super-sensitive to sounds, with the hope that he will outgrow it.

We also talked to the pediatrician about potty training and diaper changing.  Tyler, ever since he was born has struggled with being changed.  At times he has kicked or hit Grant or I, or even sometimes my mother or Francesca. It’s bad for everyone, but especially me, because I can get injured easily.  I keep hoping this will soon be a thing of the past, but he has been so stubborn with potty training.  Other than that, Tyler is extremely loving and affectionate with us, he just has always hated to be kept down, he hated swaddling even, and he’s needed three nurses to hold him down for bloodwork at the age of two!

The doctor said that, although she’s not suggesting there’s a problem at all with him, that it may be helpful for us to see a child psychologist for some techniques to deal with him.  But then I think, Talk about not wanting to focus on something!  Let’s have him focus on his mental state, why don’t we?  We’ve had a case of hyperblinking from stress in April and May, which although gone, he still talks about, now we have him worried about his ears, and now let’s take him to see a psychologist? To me, it just seems that Tyler will be feeling there is yet another thing that is not normal about him.

He’s not even three yet, should we be this worried about the diaper/potty training issues when otherwise he is normal?  This time, hopefully with Grant’s agreement, right now I’m going to trust my gut, and not pursue this.

I was going to blog tonight, if I was able, about how I was doing and how we fared through the weekend, but unfortunately my mind and body have had to turn to Tyler.

I think it was Thursday night when we were eating and I saw Tyler touch his ear.  I asked him if his ear hurt him and he said that it didn’t but that he was hearing a high pitched sound, which he demonstrated as an “eeee, eeee, eeee ” shriek.  I was alarmed, of course, especially since this is not the first time Tyler has had ear issues.  I called his pediatrician’s office and spoke to a nurse who said to monitor him, see if he starts to have pain, etc.

Today, during lunch he did it again.  He said he wasn’t in any pain but described the exact same sound to me and said,”My ears are yucky.”  I called the triage nurse since it is Sunday and she agreed that he should be seen tomorrow morning.  He’s touched his ear since then too.

No one ever wants their child to be sick, but when you are chronically ill you think, “No, not my baby too!”  I know this could be as simple as an ear infection, but I feel like Please God, not one more thing for my family.

Except there is one more thing.  Grant has been having off and on stomach pain and issues since Wednesday.  One of his illnesses is Crohn’s Disease.  It could be that or something more benign but having NJ Family Care Insurance, although better than nothing, is not the greatest when you actually have something wrong with you.

I guess I don’t really have to tell you how my weekend went, but I think that at last I am recovering from injuring myself at the pool, from the last weekend.

I am still recovering from injuring myself in the pool (See First Pool Day).  I start feeling better but helping Tyler get dressed usually makes me take a few steps back in healing.  My Costochondritis flare has gotten worse as well.  Having a Costo flare always freaks me out.  Rest is the most important thing for it, along with heat and other remedies, but it can be very slow to heal.  I am sitting here sweating to death with two heating pads wrapped around my rib cage.  I have called my massage therapist and we are going to see if we can connect tomorrow.

Something that makes my Costo worse when I am in a flare is coffee.  So no caffeine for me. Nooooooo!  I cannot stand upright without caffeine.

The pain is making me even more fatigued and for one reason or another this week I have not been able to sleep well.  Tyler continues to wake up two to three times a night and seems to be only satisfied sleeping in my bed.  (That’s a whole other post!)

I feel scared about taking care of him.  Costo is the type of condition that just really freaks me out. Grant has a doctor’s appointment and Francesca is coming over so I don’t have to be alone with him.  I feel like I am barely holding my head above the seas of laundry and dishes awaiting my attention too.

Yesterday I got a notice that my COBRA is ending on September 11th (great day).  I am in a race against time to see if I can be declared Disabled in order to extend it.  I called my Rheumatologist to see how he was doing with my paperwork and I was treated to the smarmy attitude of one of his admins.  I’m sorry that you are mad that I gave the paperwork to the doctor instead of you but he is the one who is going to be filling out the forms and he was the one whom I had to talk with about them, not you. GET OVER IT LADY, THIS IS MY LIFE! I am so tired of dealing with such rude, uncaring doctors’ administrative people.  I feel like they look at me like just one more pain in their ass and sometimes I feel like they think of me as a hypochondriac.  But…why am I caring what they think?  As bitchy as they are to me is how nicely I try to be back to them but it’s really hard when they are so unsympathetic.

Oh and my legs, yeah, they still hurt too.

Okay, pity party over.  It’s nice to have the luxury of ranting on one’s own blog.

On Saturday I hurt myself playing in the pool with Tyler, with my right bicep muscle getting the worst of it.  I have been slowly improving but I have had to limit the use of my arm.  I usually put Tyler to bed but there was no way I was going to be able to lift him from rocking chair to bed.  I told him as we watched his “wind down” DVD that I loved him very much but that I had hurt my arm and Daddy would be putting him to sleep.

“You hurt your arm?  Where?  Let me kiss it.”  I showed him where my injury was.  He kissed my arm and stroked it with his little hand.  As we watched his show he stroked my hand.

I’m overwhelmed and so thankful for this compassionate, beautiful little boy I have.  He is such a nurturing…person!  Here’s hoping he can one day kiss all of my boo boos away.

On Saturday my mother, who is visiting, my brother and sister-in-law, and Tyler and I went to our apartment complex’s pool.  It was the first pool day for Tyler and I.  Tyler has lived two summers so far (now on his third) and we have had a lot of trouble with him being fearful of a large pool.  He loves kiddie pools and sprinklers and water play at daycare but get him near a large pool and he howls.  I wasn’t sure how he would be this time around.  I bought him a tube that looked like a fish in an effort to make it more fun and encouraging for him.

I think his biggest problem this time was that the pool was cold.  Not freezing, but we have been having cool nights this summer so the pool never really has gotten the chill out of it.  My mother was getting impatient with Tyler.  We all want him to start getting more experience with swimming and playing but I didn’t want to force him, knowing that would just make him more fearful.  The best I could do was carry him in the pool, swinging him around a little and dancing.  I was about waist high or so and Tyler was not really in the water.

When we stopped for lunch I realized that I had strained my bicep muscle in both arms.  I am right handed and I couldn’t even lift my arm to feed myself.  My left arm was not much better. I was so mad at myself for not recognizing that I was actually just carrying Tyler around for a long period of time and that I was not getting any help from the weightlessness you get when you are in the water because he wasn’t in the water!

After lunch I could no longer play with him, I just had to sit and cheer from the sidelines.  My mother said but you’ve got me and “Michael” and “Mary” to play with him but I wanted to play with him!  He’s my son, I wanted to be the one having fun with him!  Logically I know that eventually, sooner than later, he will put more of himself in the water and I will have the help of the weightlessness to be able to have fun with him, but at that moment I was feeling so upset and angry.

The rest of Saturday and Sunday I spent many hours lying in bed with heating pads.  The time in the pool had also flared my Costochondritis.  I did not have enough heating pads to cover all of the places in my body where I was hurting.  Now it’s Monday and Tyler is back in daycare.  I am going to rest as much as possible but the arms are kind of important body parts to do…anything.

I feel so down about this and angry.  I feel like my recovery is going to set me back with everything I need to be doing with my health, the REAL problems that I have.  If you are chronically ill you know there is nothing worse than getting the flu, an injury or anything else on top of what you already have to deal with.

I am praying for a speedy recovery so I can get back to my life and that I will be able to play with Tyler again in the pool soon and that we can both have fun.  I took pictures at the time with the thought of posting them here as part of a wonderful day, but Saturday turned out to be a day I would rather forget.

Today I saw a doctor who is a Physiatrist, or a Rehabilitation Physician.  I like this doctor because she also has a through knowledge of Eastern medicine and has done acupuncture on me before when I could not find any relief for my Costochondritis.

The appointment was difficult because she disagreed with a lot of my treatments and even my diagnoses!  It made me feel like everything I was doing was wrong.  She felt that I should be tested for some rarer muscle diseases for my calf pain and she gave me the name of a Physical Therapist who is supposed to specialize in treating people with Fibromyalgia, although she did not think that this was the cause of my pain.

She felt that I was depressed (I mean, come on, who wouldn’t be with my life?) and wanted me to see a psychiatrist for better depression management.  She thought that I was taking an absolutely wrong medicine for my Fibromyalgia and that I should not be on any narcotics, which right now are the only things that are giving me any relief!

Basically she questioned everything my doctors are doing for me.  It was quite shocking and upsetting.  I felt like my whole world was rocked.

She is going to speak with my Rheumatologist about better treatment for my Fibro and more blood work for the muscular diseases.  I am going to find out which psychiatrists take my insurance and call this guy for PT.

I trust her, but this was just so jarring.  My life is in such a state of flux and now to add entirely new tests, medicines and therapies to the mix….ahhhhhhh!

We are trying to move, I am applying for disability and must await the outcome, and at the end of September I lose my COBRA and if my disability is not approved, I must go on NJ Family Care, which pretty much means changing all of my doctors and not necessarily being able to even keep on the same drugs.  Not to mention our finances.   If I wasn’t depressed, you would have to call me insane!

As I said, I do trust her and am going to follow her advice for as long as I am able to.  Perhaps I will get some improvement in the remaining months I have.  Big sigh.

Mama is on New Jersey Moms Blog today.  For the latest adventures in child-rearing, please check out “I Have a New Child In My Life, His Name is Only Me.”

It seems like a lot longer but we’ve been trying to potty train Tyler for a little over three months now. His teacher at daycare tells me he’s doing pretty well there, but he’s regressed at home.  Now he either refuses to go to the potty or if he does get on there he tells me, “My pee pee won’t come out.”

He loves the book My Big Boy Potty, but I think he just likes it as a story.  I say, “Come on Tyler, don’t you remember? ‘Michael sat and sat.’  Give it some more time!”  But he jumps right off.

Oh and the reward method?  I can’t even get Tyler to listen to my ideas, let alone agree to them.  It worked in the beginning but I think he was in it for the stickers.

We have him only in pull-ups but we are using them like they are diapers and they are twice as expensive.

I think it’s hard to be a woman training a boy.  Is it normal for him to sit on the potty and act like he is milking a cow?

Considering myself a patient mommy I bought one of those gentle potty training books, but I think I want my money back.  I don’t think I will ever look upon this time of Tyler’s life as a wonderful bonding experience that we both treasured.

I am so happy to be in bed knowing I have made it through yet another long weekend!

Grant, Tyler and I visited my aunt and uncle for a barbeque yesterday and we had a nice time. Tyler enjoyed playing with his cousins, meeting the newest baby of the family and broccoli (yes, weird child!)  The kids were having fun playing “football” and “baseball” of a fashion when some neighbor shot off a round of firecrackers and Tyler was freaked out about how loud it was for him, he was scared too.  We took him indoors and kept him there for the rest of the evening. Everyone says to try not to think about Tyler’s next hearing test which is not for another six to nine months, but it’s difficult when he refers to sounds being too loud for him on a daily basis.

On Friday I got my blood work back that my GI doctor ran and it appears I am negative for Celiac Disease.  I know I said I hoped I didn’t have it but now I am faced with Well, what is wrong with me, then?  I am not the kind of person to be satisfied with saying I have some sort of malabsorption issue, I want a name for it!  I am going to call the Gastroenterologist tomorrow and see if he has any other thoughts and try once again to find an Endocrinologist.

My mother comes in tomorrow for a visit that for me is too short.  Being sick, I can really use as much help as possible.  But my mother lives in another state with her second husband. After almost two years I really can’t think of him as my step-dad and that I have a step-brother and sister.  I feel too old for that.  But that is for another time, another post.