Tag Archives: OCD

11 Months now On TPN. Not doing so well.

It has now been 11 months since I started back on TPN. After a string of really bad bacterial infections they started to use my port for everything. Well I guess the port did not keep out the infection or it was never cleared to begin with.

About two weeks ago I got super sick again. I would have going to the ER the night before, but in all honesty I did not know how bad off I was. By the time my home health care nurse and her supervisor got to our apartment, I was not coherent and my fever was over 105. I was hallucinating and just not in good shape. My heart rate was erratic at best and I was floating in and out of consciousness. The nurse told my hubby it would be a huge risk for him to try to take me on his own. So they called 911 and asked for a special ambulance with cardiac equipment.img_20150807_105514

I am guessing it took them hours to bring down my fever and to get me stable enough to move me to a monitored room. One step down from ICU. After a few days I was moved to a regular floor and they put in a new PICC like for the TPN They wanted to take the port out right then, but my blood numbers were still not where they should so they were going to wait till end of weekend.

Then I found out they were going to do lung biopsy day after I got home the port removal next day. I kind of told them to go to hell. I was still/am still recovering from this horrid blood infection. I am sure my Dr.s are not happy with me, but I have good reason. The dr who was going to do the biopsy is not even board certified. That to me made NO sense. With my history with procedures and things going sideways fast. Just not a good idea.

I will see my regular dr today in hopes he can get me someone with the credentials to take the port out.

I have about 1/2 a dozen or so tumors in my lungs that need to be taken out. I am not happy about the fact that Kaiser is going to be doing it. I am scared, last time was just one tumor and the surgery went sideways at the end. This time we are dealing with so many more. It just scars the crap out of me.

So I should do a bit more of an update on the family front. PA started having seizures again. So she is back on medication. We are having to home school her and this is NO walk in the park. Shann was easier to home school by far that PA is. Oh My Heck this child is worse than her sister ever was.img_20150619_173119

We have tried it now for several months now and we need to go back to regular school. She just is not doing well and is so hard on me. I am spending so much more time in bed I just can not keep up. Then the house work. I keep falling so far behind I use to keep a very clean house. Now on a good day I can hardly just keep it picked up, let alone clean.

OH!!! The best news of all!! My oldest daughter Shannon and her Husband David are expecting. Due date is July. I am excited for then, but I am not sure if I am ready to be an Oma img_037988

Case of the Missing Cookies

Case of the missing cookies

The other night, I had just gotten PA out of the shower & I was in her room looking for clothes. While I was going through her drawers I found a surprise in the bottom corner of her drawer

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A mystery was solved from a few nights previous.

The missing cookies

It all started few days before I found the “surprise” was on Sunday. It was PA’s sister’s 18th birthday (yes, I feel old).  On Monday one of her friends brought a bag full of cookies to school for her. She shared a bunch with her friends and brought the rest home. After dinner she offered two cookies to PA, and she promptly ate them. As the evening went on the bag of cookies was left on the counter unattended. We did not think twice about it.

The next morning we got up and when my older daughter went to put the cookies in her lunch they were gone. We could not figure out where the cookies went. When we went to bed there were 5 cookies in the bag. I know we did not eat them, and as far as we knew PA had only had the two cookies. My older daughter went to bed before us, so I know she didn’t eat them.

Now back to the drawer. That is where I found pieces of many cookies sitting in the bottom corner of her drawer.

This is not the first time we have had this problem with her stashing food. She has done it with soy sausage, cheese, pretzels you name it. However it has been about a year since she had done it.

I did go back in her room the next day after she went to school and found what I feared.

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Found an old ham & cheese sandwich from Subway.


Also in her closet:
IMG-20130302-00017I found pretzels in the big teapot that holds her tea set.Now I am thinking I need to go through her room again. We have been lucky to this point, she has not gone back and eaten anything that has made her sick. I need to figure out why she does this.I have read a few places on line and most say it is because kids were deprived of food. This is totally not the case. I am having a hard time finding anything more on this subject. She is not overly OCD either. I am really kind of baffled on this one.If anyone has any ideas or experience or insight feel free to share.  Thank you.

I’m bored & was accused of hovering

I’m bored & my husband has accused me of hovering. I asked him what I should do and he told me to write a blog post about being bored. So here goes and for the record he cannot come back and say anything because he told me to do this.

I’ll admit it I don’t entertain myself well & after I have been sick for a few days I need to get out to do something. I already picked up the living room & have dinner in the oven and to set the record straight I did try to entertain myself. I went on to Facebook no one really was on line so I could not chat with anyone. Unless you play games (which I do not) then Facebook becomes boring after about 5 minutes. I went onto Pinterest too & well nothing was peaking my interest there either. I trolled Twitter for a bit & you guessed it. It did not really pull me in either. I also thought about some of the unfinished projects I have, but soon realized I needed something for just about everything so I was back to not being able to go anywhere. Besides sometimes I just want to be entertained. Is that so bad?

See everyone in my household all have something they go & do during the day. My husband has school so he gets out most days to study at our local Starbucks and has school every Wednesday night. My 17 year old has High school and also has church activities every Tuesday night. Even my 4 year old has school most days. Even if it is just 4 hours a day even she gets out of the house.

The only time I get to get out is when I can con someone to take me.

Unfortunately I cannot just get out of the house on my own. See I am not able to drive any longer because of health and vision problems.  I have to depend on others for rides. Usually when I am bored & want to get out to do something, I just hover around my husband & he usually gives in. Right now I can’t think of anything to do that doesn’t cost money & somewhere I don’t have to walk too much. Being it is getting ready to storm outside he doesn’t want me out in it. I feel like a little kid stuck indoors watching the world go by.

Of course there is always housework **sigh**

Bugs revisited…..

So I have written in the past about PA’s fear of flies & ants (well bugs in general). This is not a “Yikes a spider” type of thing but an out right screaming tantrum refusing to step into the room with the bug wakes up with nightmares type of fear.

I made the mistake last summer to take PA horse back ridding in hopes it would help her core strength & balance issues. Well it backfired on me. What is the one thing you cannot get away from around horses? You guessed it Fly’s & Ants. After that disaster of an outing it took her 2 weeks before she would sleep the 4 continuous hours a night before waking.

Now back to the present. We are very carful about the bug issue around here & it’s not easy because for some reason we moved to a place where the flies are HUGE and abundant. My husband is always on the look out for flies & actually carries a flyswatter around the house with him. One of these days I will make him a holster for the thing **laughing**.

So over the past few months we have not had a bug incident & no real mention of them (thank heavens). That is until very early this morning (4am to be exact). I woke up to her screaming at the top of her lungs that there were ants in her bed & just sobbing about how they were crawling all over her. It took my husband & I a long time to get her to calm down & had to move to the front room before she would calm down. Even then she was still acting like she had ants crawling on her. Needless to say she did not get back to sleep & thank heaven to my Shann (her 16 year old sister) for taking over for us after she got home from seminary (early morning bible study). My husband & I were able to get another hour or so before we actually had to get up & get going.

The rest of the morning was traumatic & she was whiny & defiant. I felt bad for sending her to school that way, but we needed a break. Now she is home & obviously tired. I still have no idea what brought this on. The only thing I can think of is that she has been picking at a hangnail she got & she is interpreting the sensation of that like she has ants crawling on her. We often have to cover up sores on her or she will pick obsessively at them until they are covered & out of sight. However she will take Band-Aids off & will not keep them on. Then she keeps picking at her sores. It really is a no win situation.

So I am left wondering how long she will not be able to sleep & how long she will keep having nightmares. I actually had thought she might be hallucinating this morning, cause she was wide awake & still was picking at her skin like she had ants crawling all over her. I am just not sure how to approach this. Even if we try to talk to her about it just makes her think about it more.

So frustrating sometimes when you just don’t know how to solve a problem like this with a small child let alone a special needs child.

Play Date for PA = Sleepless Night for Mom

Well the play date did not cause the sleepless night. Actually the thought of the play date is causing the sleepless night for me. See I LOVE the fact PA is having a play date & also that she has been talking about this for days. I think it is wonderful.

See PA does not always play well with others & frankly I do not know this lovely lady very well. I mean I know her she goes to my church & she is a wonderful mom to four beautiful children. Most people adore her & she is a very pleasant person. I actually like her & would love to get to know her better.

Then what the hell is my problem right? Well yes, see it’s complicated. Truthfully not so complicated. I talk all the time about how PA has a hard time with playing with kids. She doesn’t play with them. More like around them. She loves to be around kids, but has a hard time relating to them.

Until tonight I never thought of my own insecurities with other people.

As a kid my father was in the Army & we moved around a lot. I never learned to make friends. It never really interested me. The fact we moved a lot made it so much easier because it didn’t matter if I didn’t make any friends at one post, because well we were only going to move. It didn’t matter. I also had 3 sisters at the time so if I had to have a friend well I just awkwardly attached myself to one of theirs. I faked it much of the time just so I would look like I fit in.

Come on we all have things we struggle with. I have a really hard time relating to most people in person. On line I can be just like everyone else or I think I do a pretty good job anyway. As a kid I never fit in. I was always the one picked last for games. I was always just a little slower than most and was the kid who got beat up on the way to school every day. Yes, this really happened.

It was the longest time we had been at any one post was in Germany On the way to school every morning this kid from down the street would beat me up. Keep in mind I had 2 sisters I walked to school with every morning. One of who is 11 months younger than I. How did I get separated? Simple, I always lagged behind saw something shiny & inevitably would lose track of time. I was often late to school because of this.

One day this kid got a god shot in & knocked me out. People got worried, as I was later than normal. Someone found me in a little park that was on the way to school. MP’s were called & I ended up at home trying to explain what happened.

I am still unsure how this really went down, but without knowing months earlier accidently hit this kid over the head with my metal roller-skates. Well I may have known I did this, but honestly forgot to apologize. I was not the most tactful child. I really don’t remember much of the detail but I was made to apologize for hitting him over the head. I don’t remember if he apologized, but he must have.

As I grew up I was able to learn how to make friends, had relationships even got married and stayed married (I have a very patient husband who puts up with a lot). However even with the years behind me of having successful relationships (many more unsuccessful than not) I still lose sleep at the thought of getting to know someone new.

So tomorrow this lovely lady is coming over with her 4 wonderful children & here I sit tonight freaking out over the possibility of saying something completely inappropriate or doing something so awkward that this poor woman might never want to be in the same room with me again. I know this sounds completely unrealistic, but a genuine fear for me right at this moment. I know full well it will be fine & the worst thing that will happen is I will dominate the conversation and she might think twice about spending any length of time with me for a while.

Just goes to show in some areas we may not be so different from our children.

Swinging Cinderella (Wordless Wednesday)

A Day with PA in Pictures and A Few Words

I thought I would do something a little bit different. This is a typical day with PA. Not everything we do together, she does lots with her dad and sister. We try to do things to help with her various developmental needs. We do things a little different from many families with special needs kids, but this works for us right now.
I just thought you would like to see a day with PA my way….In pictures..Enjoy 🙂

This is what I see when I can focus my eyes in the morning.

Then I go check to see what PA has put on her “doll” the Buda.

Before I even wake PA up I need my one vice my Diet Coke.

Mornings are never good for PA so I skipped the getting ready part & went directly for “Ready For School”

On our way out to wait for the bus we walk through the garden to see if there is anything we need to pick.

This starts my time. I usually have lots to do and almost NO time to do it. I am a frazzled mom. I start lots of projects and almost never complete them. I also do try to do housework during this time. Some days I even get to go out and do errands.

Then PA gets home & it is snack time. She has a very narrow range of foods she will eat and this is about it.

We do crafts. Play dough is her favorite. We also do painting and coloring.

We also work on self-help skills. PA is just now getting to where she will put on socks and shoes. She thought her dads black dress socks would go with her Sunday shoes. Backwards no less. I had to take a picture because it was number 1 an accomplishment for her and number 2 is was so darn cute!

This is what we call “going shopping”. This is how PA will get her food. We have had to make it fun for her and interesting. I picked up this shopping cart last year when we were having issues getting her to eat and it has done the trick. We still have many days a week where she will not eat, but she is doing better.

It’s play time till bed.

Story time before bed.

Then while she gets her story we also do her medicine. We also do this in the morning too. Also includes her nebulizer treatments morning and night as well.

Before bed we also set our clothes out and get her backpack “packpack” as she calls it.

PA Sleeps for a few hours then she is up again. She gets up 2-3 times a night to have her drink, because she won’t eat the right or enough food in one day.

This makes for long days for me. I don’t sleep well and have not since she was born.