Permission to Speak Freely

I started blogging around 1998 when I heard about an online entity called Open Diary. My blog was called Emiliasdance and was mainly a place to write my thoughts and feelings and rants about the very painful divorce that I was going through. As you can imagine it was a pretty dark and angry place. But I needed a place to work through all of those emotions away from the eyes and ears of my children. Once my divorce was final the purpose of the diary was to record the heartbreak that I felt over losing my home and my family and seeing the awful things my ex-husbands betrayal and desertion were doing to my children. The diary remained a dark windowless prison of anger. I was surprised that anyone ever read it, but I did have followers.

Then 9/11 happened and the world cracked apart. My oldest son became a paramedic and moved out, that was natural. But my middle child became a roaring patriot and I was not able to stop him from leaving school, joining the service and be sent immediately to the middle east. That year was possibly harder than the previous 4 years combined had been. My diary became a chronicle of my fear and anxiety. But more than that, it became the place where I wrote about the first symptoms of the cancer that was growing in my body. It was pretty bleak. That year was where the title of this diary came from. That year I began to feel like it was just God and Mollie and Me.

At the beginning of 2004 my diary very briefly became a happier place with my son's return home from war. But two months later my world split apart again. I was a single mom of an 11 year old and I was told that I had a very aggressive form of breast cancer and my doctors were certain that the cancer had already spread throughout my body. Emiliasdance became the record of illness and treatment and pain and sadness and fear and resolve and the compassion of others. Having little else to do, I poured my heart out in those posts.

In October of 2004, just slightly more than a month before my treatments ended Open Diary was hacked and Emiliasdance was deleted along with thousands of other diaries. I'm sure those posts still exist, but I can't retrieve them.

I stayed briefly with Open Diary but then switched over to another platform on AOL.The AOL platform was chunkier than Open Diary, and didn't have nearly the amount of authors. I tried a few other diary hosts but just didn't find one that I liked. I left pieces of blogs all over the web. During that time Emiliasdance was retired and I started writing The Pink Tee Shirt.

In 2006 I found Blogger and have written here ever sense.  The Pink Tee Shirt took on a lot of other themes like my failing health and life raising an overachieving teen, and the additions of daughter in laws and grandchildren to my family. But the theme of my fear of my cancer returning wove through it. For a brief time I changed the name of the blog, but then changed it back.

This month as I wrote about here  I put The Pink Tee Shirt away and picked this blog up. I have been as sad about closing it as I was about losing Emiliasdance. It still exists, but it will be a while before I feel okay about opening back up. I have begun to realize a positive to changing blogs. Though my family never read Emiliasdance, they did The Pink Tee Shirt. For that reason there were some things that I could not write about, truths I could not tell. They don't know about Just God and Mollie and Me, and won't unless I tell them about it. I don't think that I will. I have things that I'd like to say. I know that it is better to not talk about people behind their backs, and those aren't the kind of truths I want to talk about. I have several family members whom I have to walk on egg shells around. And now those egg shells aren't there any more. I can express more freely my feelings about some of the things that I write about anyway. I no longer have to keep it neutral.

This long history of my blog is to start here saying the things that I really feel. My ex called earlier today. Mollie had left her phone in a rental car and someone found it. The called my ex to find out how to get the phone back to her. My ex called me to ask if I wanted the phone sent to me or Mollie. Why would he think that it would be better to send the phone to me? Oh yeah, I'd have to give him my address so he could drop by to inspect where I'm living. I realize that he had the right to know where I was raising the child he walked out on. But Mollie doesn't live with me anymore. She hasn't in two years. Now my ex has no reason to care where I live, yet he does. It has been driving him crazy that nobody will tell him. I don't think that is the real reason that he called. I think he called because he wants someone to care about what he is going through.

My ex left me for a woman with a lot of mental problems. I'm not saying that out of spite. She actually has diagnoses, and they are major ones. But over the years I have noticed a pattern that she thinks the world revolves around what is going on with her and doesn't try to consider the struggles of others. So when ex developed plural effusions and almost died, she didn't even go to the hospital. She was more concerned about her comfort zones than being concerned that he really needed someone there for him. He and I were best friends 2 years before we started dating. Then we were married for 22 years before we were divorced. He knows that I am a caring person, that I often put the needs of others before my own.  When he wants someone to care he reaches out to me.

Today things aren't working out well for him. He's unhappy in yet another job and doesn't want to see it through. He is also getting buried in medical bills. His insurance isn't very good. He has a $50 copay for things that I pay a co-insurance of $2.45 for. While he was talking to me I was sitting there thinking "you are an idiot". If he was married to me, he would have had someone at the hospital with him and he would be on my insurance and wouldn't have these problems today. Things have definitely  not been a picnic here, but...

The part of the conversation that disturbed me the most was he started talking almost incoherently about OCD and Attention Deficit Disorder. I got the feeling that he was talking about those tendencies in himself. I have known that he has depression for more than 30 years, but I never would have considered him OCD or Attention Deficit. I wonder where that came from. My sister is the picture of OCD, I know what it looks like. I know that he is stubborn and he wants things done his way or the highway. He also he has commitment issues, thus his job situation. But I wouldn't tag him OCD.

I wouldn't have been able to say what I have said above with the family members reading it. I guess I could say it, but I'd take a lot of flack for it. And it feels really good to be able to process those thoughts here.

Speak of the Devil

I should know better than to throw stones when I live in a glass house. I really wasn't feeling all that well yesterday, and I wasn't too hungry. I didn't eat so much. Feeling worn out, I went to bed early even though I wanted to stay up and chat with the breastcancer.org sisters. Not even thinking about the extra hour of sleep we get in the time change, I didn't think ill of going to bed with a blood sugar level in the 80's. I woke up this morning in a heavy sweat. I rarely feel it when I go low and when I'm that low it doesn't occur to me that I should do something about it. For some reason this one was different. It may be that seeing my friend that low on Friday shook some sense in me. I immediately drank a juice box and ate a Kind bar. I didn't even test first. Then for some reason I went and took a shower.That's a bit of a weird response for me. I usually hang out around my meter to see if it's going up like it should. It was, when I tested after the shower I was at 76. I don't know how low I was, but it must have been really low. I will not be letting myself go to sleep when I'm in the 80's again. I've got to quit being so lazy with this diabetes thing.

I Should Have Asked

I was having lunch in the cafeteria at work yesterday, when one of the manager's from my department and asked me if I knew a friends contact numbers. I had my computer with me, but wasn't able to access the information in the system. I don't have the right permissions. I followed the manager over to another part of the cafeteria to see my friend surrounded by paramedics. Fortunately the occupational health nurse was there and he was able to use my computer to access my friend's records. There was a number listed so the manager tried to call it.

I have known this friend for almost 15 years and know a bit about his health. My friend was looking really pale gray and sweaty. I thought about asking if they knew he takes insulin for diabetes. But really, he was surrounded by an RN and three well trained paramedics. I thought for sure that they had already checked his blood sugar. Besides, with the way he looked I really thought he might be having a heart attack.

When I got back to my desk I had a voice mail from the manager. He asked if I had a contact number for another friend who has known this friend for a very long time and knew his family. I was able to provide that number for them, but I had to dig for it.

Around 3:00 my friend called me to let me know that they were sending him home, and he was going to be okay. He told me that his blood sugar had gone very low and when the paramedics showed up he wasn't able to communicate with them. I really hadn't gotten close enough in the cafeteria to hear what was being said, but I assume that they did check his blood sugar.

There are simple and easy ways to protect myself from being in my friends situation. I have talked with him about it, and I'm not sure that he hasn't done it. The first and most logical thing is to program in your phone and A-ICE number. Mine is annoying because Mollie will always come up as A-ICE Mollie, but it gives emergency workers a number to reach. The problem with this is that in an emergency like my friend had, no one thought to check his phone for a number. I have to trust that they would, and I don't know how likely it is that they would check.
The second thing I do is sign up for a service called Health Vault which is connected with my health insurance. I place my medical information and my contact information in it so in an emergency there is a place where this information can be found. But emergency workers would have to go into my wallet to find the card with my ID and pin number to get to the information. And I can assure you that they aren't going to do that. They could also call my insurance company who can direct them to my information. But then they would have to look in my wallet to get my insurance card...again, they most likely aren't going to do that. The thing that I do that is most helpful to me is that I keep an Excel worksheet with all of my medical information on it. On this sheet, I have my diagnoses, my doctors and contact numbers, my medications and strengths with when I take them and what for. I have my ICD identification numbers. I have my insurance numbers, my allergies and my pharmacy numbers. But most importantly I have a list of 6 people they can call if I can't communicate with them. This list is updated almost with every doctor visit. It is great when I go into the doctor's office because I don't have to try to remember all that information. But the shortfall again is would an emergency worker look for it? I don't think so. I can give them all the information in the world, but if they don't look for it, it's worthless.

With the emerging health care centers, some but not all of my information can be looked up and seen by anyone in the center who would need to know. This seems like a very logical way to go. But I was sick long before the Affordable Care Act was passed. Not all of my doctors belong to the same centers, and I am not willing to change doctors because they belong with this affiliation and not that. Right now my doctors are spread over 4 affiliations, and they don't communicate with each other.

Mollie knows about the list that I keep and where in my purse they can be found. But I am beginning to think that I may need to go the the Nurse and my supervisor and let them know about the list and my A-ICE number.

On Monday I'm giving my friend a bottle of glucose tabs and a card telling him not to be such a drama king. That's what he said to me last time I had to go on an ambulance.

In all of this I have another lesson in asking the questions even if they seem obvious.

Pinktober is Coming to an End

It's Halloween. I think that Paul has decided to be a Zombie this year.

NaBloPoMo starts on Saturday. I looked at the prompts on Blogher and none of them really interested me very much. I wish they had alternative prompts. I never have really finished one of these. I've tried a few years.

Speaking of not finishing, I had planned on reposting blogs about breast cancer this month, and even though I found a couple that I felt were really good, most of them came off as waa waa, I hate pinktober. I found it pretty amazing that so many people living with or beyond breast cancer feel so disenfranchised with pink. There are a lot of reasons for that. For me it's the total commercialization of the month. It's seems like a pink nightmare before Christmas. I'll put on a pink tee shirt and a pink tutu to raise funds, but I really don't want to walk around in a pink hoodie carrying a pink travel mug all year (or even all month) long. I've heard others claim that all that money isn't really going toward research, and that there is no research for better treatments for stage 4. I have heard people even claim that nobody is really getting free mammograms. A quick web search pretty much refutes all that. Research is being funded. Women are given mammograms and services are being provided for survivors. Still, I am kind of glad when the frenzy is over every year.

I did score on pink this year. Komen for the Cure Atlanta and the Buckhead Hotel Consortium were giving away weekend packages to two survivors every week this months. I had to like their Facebook page and send in my story to enter the contest. I did and I won one of the packages. I have a weekend stay at the Marriott Hotel in Alpharetta and a visit to The American Doll store. Since I don't have a granddaughter and Mollie is too old and definitely not interested I have arranged to have Sweet Caroline visit the store with me. She  will be able to pick out a doll to take home and I will get to spend some fun time with her. I'll bet that she will be surprised to find out that I exist outside of church. I'm looking forward to getting the voucher for all this.

Happy Halloween!

Dr. General's Report

Shamika from Dr. General's office called yesterday.The labs came back and yes, My sodium levels are up a bit, but my magnesium levels are still in the toilet. He wants me to add a fourth magnesium pill everyday. Two thousand milligrams of magnesium a day. My gut is already having a field day.

Kate called yesterday. She talks too much and doesn't me finish explaining what is happening so she twists everything. She frustrates me. I needed help, but she isn't helping.

The pharmacy called this morning to tell me that they are going to have to order the magnesium for me. That isn't an unusual happening with them. It happens every month with the magnesium, buproprion and metoprolol. I guess they are popular medications.

I only have 3 more appointments for the remainder of this year. They are a device check next week and then appointments with Dr. Oncology and Dr. Endocrinology. I already have 9 appointments lined up for next year.#splinteredcare.

Check Up

I saw Dr. R yesterday. I think that to avoid confusion I'm going to start naming them what I see them for, so I saw Dr. General yesterday. He wanted to check my electrolytes again. If they are still unbalanced, he wants me to go off the omeprazole and try something else. Of course I had to Google what else there was. Besides over the counter stuff, everything else does the same thing as omeprazole. Besides, I don't think that omeprazole is the whole problem. I have hyperaldosteronism. That has been confirmed by 3 doctors so far. I have to take something to keep from having a low potassium level. So I take spironolactone. It works, but it works a bit too well. I have normal potassium levels, but then my kidneys don't filter enough sodium and magnesium. Then I have low sodium and magnesium levels. I've been on the seesaw for years.

thepinkteeshirt is temporarily put away for the winter

I had to close thepinkteeshirt. Those who followed it hopefully will understand. I may be as hysterical as those who demand that we suspend flights from West Africa. But  the world is full of angry people who have no respect for the sanctity of life. That they as a group are acting individually makes it impossible to predict when and where they will attack.

I started this blog back in February. I'm not sure why. I know that I had intended it to remain private, but then I didn't really make an effort to write in it. It is coming in handy now. So this winter I will hang out here. Maybe by the spring I will feel safe enough to pull thepinkteeshirt out of the closet and wear it again. Until then, maybe my followers will find me here.