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04
Jun
13

A Sad Necessity

By thissideofgaudy 1 Comment
Categories: Children, Family and Medical
Tags: , ,

As I mentioned in my last post, IRP began to show signs of severe depression again Thursday. She even posted a letter on her bedroom door that she had written the day before. The letter talked about her urges to cut and otherwise harm herself. She said that she had given up. These and other things obviously alarmed us.

When IRP would not accept our help and moved in with a “friend”, we had to do something. We were afraid she would either actively harm herself or neglect herself until she was once again critically ill. Reluctantly, FMP spent most of Friday filling out a mental health warrant on IRP.

Yesterday, the warrant was served and IRP has been taken to a mental health facility involuntarily to be given help. As expected, she is very angry with us. In fact, she is currently refusing to see or speak to us.

Obviously, this is not something we did lightly. In fact, we feel horrible about it. But, we would rather have a live daughter who hates us than a dead one who does not. Please pray for IRP and for us. We believe we did the right thing, but it is still so very hard.

Thank you!
TSG

25
May
13

No, Thank You

By thissideofgaudy Leave a Comment
Categories: Medical
Tags: ,

This blog is meant to be an honest record of what I think and feel as well as about what is going on in my life. With that in mind, I feel very cranky and unhappy today. For those who want to comfort and/or chide me about this, I am not interested. I want to be this way for awhile. So, I will be ignoring all comments of the above nature.

I am hot. The whole world is hot and I am not sure it is ever going to be cool again.

The house is a wreck. It has always been a wreck and always will be. My children make messes and don’t clean them up. Then, they act like I am killing them when I suggest they do so. They certainly could not make any more noise if I actually were.

I am bored. Nothing interesting has happened in some time and may never again.

I am never going to finish writing my book. I spend too much time working for that. And, when I do have time off, I have to work on the house.

I don’t fit in most of my vintage clothes right now. This makes me very unhappy. I like them and think I may never get to wear them again. There are very few vintage clothes available in my current size.

I am most angry about the years wasted by the cancer and its side effects. Some two and a half years of my life were spent dealing with this. Years I could have spent doing things that would have moved our family forward. Things that might have left us in a better position. I don’t even remember most of those years. Yes, they are almost totally a blank in my mind! Only small scenes peek through. What could I have done if this had not been so? In addition, these were the years in which medicinal side effects put on the current weight that I cannot seem to lose. I would be much healthier and more active if this had not happened. (No, I am not interested in reflecting on the fact that God spared my life–please see the first paragraph). I want those years back. I want to feel the ages I should have felt during those years and do the things I should have been able to do. I want revenge.

This is ridiculous! The cancer was ten years ago and it is still wrecking my life. I cannot get back what I lost and I cannot retrieve what I would have had. I am mad, mad, mad! And there are those who think “Save the Tatas!” is a light-hearted way to show support. Why don’t you have both your breasts removed and reconstructed (no, I will never feel anything there again!) before you are forty and then tell me how “cute” that is. I am quite sure that we will not see “light-hearted” support for testicular cancer patients reading, “Save the Family Jewels”. Men’s testicles are too “important” to be made fun of in that way. Women’s breasts are not, though. We are tired of this. Find a solution to the problem and quit running around “showing support”. I don’t want support, I want to be sure that this will not happen to someone else.

I really want my breasts back. I want to feel something there. I want to know when I am about to hug an acquaintance too closely before they pull back in alarm. I want to feel it when FMP casually walks by and gropes me. I even want to feel it if I accidentally hit myself there while trying to catch something. Surely, our neuroscience has advanced to such a state that I need not have totally lost feeling. This is the very worst part for me.

I am cranky and unhappy today and I intend to run with it. I may run with it tomorrow, too. I may run with it until someone does something about it. Do something, people! Stop just saying, “we are sorry”, “we support you”, “you are so brave” and other junk. Give me back my life! And don’t let breast cancer take anyone else’s! Get to it! NOW!

15
May
13

Cabin Fever

By thissideofgaudy Leave a Comment
Categories: Children, Family and Medical
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I will be spending the night at the extended care facility with IRP. She called us at about 9:15 crying and with a severe case of cabin fever. It was all I could do to convince her that she could not check out in the middle of the night with an IV line in her upper arm. My mom is going to come tomorrow before I leave for work and stay until IRP is ready to check out. By then, I should be back here since the last IV antibiotic starts at 4:30 and takes thirty minutes. Then, of course, the PICC must be removed, etc.

I am going now to try to get some rest in this lovely reclining chair.

Good night!
TSG

14
May
13

A Slight Delay

By thissideofgaudy Leave a Comment
Categories: Children, Family and Medical
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IRP will not be coming home until Wednesday. The extended-care facility received a 7-day prescription for one of her IV antibiotics instead of a 5-day one. The infection specialist said that we could bring her home today. But, when I asked what would be best for IRP, he said the extra 2 days would be very helpful to her considering the magnitude and location of the infection. We really want her home, but feel we have to do what is best for IRP. This was a near thing and I have no desire to repeat the experience.

I have always told my children, “My job is to keep you safe and happy, in that order. It is possible to be safe and not happy. But, you cannot be truly happy unless you are also safe”. Now, I find myself in the unenviable position of standing by my statement.

We love you, sweetie, but we can wait a bit for you to come home if it will make you safer.

Love, Mom

13
May
13

Hiho! Hiho! It’s back to work I go!

By thissideofgaudy Leave a Comment
Categories: Family, Medical and Work
Tags: , ,

IRP’s PICC (permanent IV line) is scheduled to come out today and she is supposed to come home. That would be so lovely. We really miss her around her. Even the pets are pouting. Tomorrow will have been three weeks since the surgery and she is doing things by herself quite well. It will be good for her to come home to continue healing.

This glitch has caused IRP to back up her plans a bit, so we are shooting for Fall 2013 as her return to college. At this point, IRP feels that even studying math would be preferable to what she is doing. Considering our family’s general hatred of math, this is a large concession.

Since FMP will be available today for IRP, I am going back to work. The people there have been so kind and accommodating, but it is time to resume my tasks.

TSG

11
May
13

no pain, hurrah

By thissideofgaudy Leave a Comment
Categories: Family and Medical
Tags: , ,

IRP is much more content now. Her medication is arriving before she is in pain and someone now comes in periodically just to make sure she is okay. IRP has been to physical therapy twice now, once yesterday and again today. The goal is to keep the scar tissue that caused the current crises from having a chance to build up again. We definitely don’t need another round of hospitalization and peritonitis.

I spent a good deal of the day asleep trying to feel human again. I have spent much of the last three weeks either on a couch or in a reclining chair. I am not complaining, but I also spent most of those nights getting up to comfort or aid IRP. I am grateful that I got everything settled to such an extent that I had the luxury of sleeping so late.

Monday, I return to work. If all goes to plan, IRP will also be coming home that day. We are making sure that everything is clean and easy to get to for her. FMP works from home on Mondays and Tuesdays, so she will have help if she needs it. I do not anticipate her needing much as the only reason she is here is the IV antibiotics. Those will be stopped Monday.

TSG

11
May
13

in which Mom gets dangerous

By thissideofgaudy Leave a Comment
Categories: Family and Medical
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I rarely get angry because of the amount of energy it takes. I would rather use what I have elsewhere. I am not talking mad; wherein I generally curse (as little as possible), throw (minor, unbreakable) things and generally stomp about. I am talking about major anger in which I become very quiet and very controlled. FMP informs me that this is one of the scariest things he has ever seen. The last time it happened, we were in possession of only two children, RTA and IRP. To put this is perspective, CPI just turned 18.

Anyway, we noticed today that IRP’s pain patches, which had been used in the hospital, had not been put on at the new place. We asked about them at about 1:15. By 5:30, the rest of the family had left for the night. At 6:15, IRP called in tears to say that she had just been told that the patch prescription had not been sent over and the doctor at the extended-care facility could not prescribe them without seeing, in writing, what strength the original patches had been. Why did it take five hours to come to this conclusion?

In addition, IRP would frequently have to call two or three times to get her pain medication and then wait up to thirty minutes to receive it after someone finally responded. She asked to have her PICC (permanent IV port) dressing changed before we left and it had not been. IRP does not call for her medicine until she is at least a four on the ten-point pain scale. The length of time it was taking her to get it meant that she was at a ten by the time it arrived. IRP has spent her entire life in some form of pain or the other. This was NOT acceptable. In addition, every time the pain gets that bad, IRP starts crying. Every bit of energy she spends fighting pain is not available to fight the infection. I can’t have this and I won’t.

IRP’s pain medications are now to be given to her on schedule whether she asks for them or not. The PICC line has been cleaned and the dressing changed. The doctor has been given the strength of the patch straight from the hospital report and IRP is happy once more. I hope I made my position perfectly clear. If not, I will just have to do it all again with someone a bit higher.

TSG

08
May
13

at the new place

By thissideofgaudy Leave a Comment
Categories: Family and Medical
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We finally got IRP liberated from the hospital. She is now in an extended care facility. There was a little bit of a problem at first when she was not in a room by herself as expected, but we have gotten that sorted out. I will be staying tonight to get her settled in and adjusted to the schedule tomorrow.

Tomorrow night, I will be back at home so that I can reassert my rights to my pillow. It seems that, in my absence, my pillow has been co-opted by our rat terrier, Whiskey. I have serious objections to this, so it may get ugly. I’ll let you know who wins.

Have a great night!

TSG

08
May
13

let my person go!

By thissideofgaudy Leave a Comment
Categories: Family and Medical
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Yesterday, someone from a long-term facility came by to evaluate IRP. This is at least a small step forward. Two previous facilities refused her outright because of her age. We are now waiting to see what the insurance says. They have rejected somewhere else twice. I have heard that the third time is a charm. This is the third try for both methods of extended care, so I hope it will go through. IRP is terribly bored and frustrated by now.

Aside from the issue above, IRP is really improving. She is now taking one of her antibiotics by mouth and we just walked down to get her some coffee at the coffee shop here. The trip involved a long stretch of hallway and an elevator ride. She had no problem with either. Except for the hospital gown, anyone would have thought she and I were here to visit.

Would someone please let my small person out of here?!

07
May
13

No More Physical Therapy

By thissideofgaudy Leave a Comment
Categories: Family and Medical
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Today, IRP “graduated” from physical therapy. Although we are glad about this, we are unhappy to see the therapist go. She was so cheerful and encouraging that it was a pleasure to have her here. Thanks, Mary, we will miss you!

IRP is also now taking one of her antibiotics by mouth instead of IV. One more step forward. Another long-term facility came to evaluate her today. So far, our insurance has been the problem twice and IRP’s age two other times. By the time we find one, it might no longer be needed.

IRP feels much more cheerful today and has been wandering around a lot. I stayed home most of the day and rested. I am still tired, but feel better.

TSG

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