All We are Saying is Give Peace a Chance

Rob and I are both peacelovers. We do not enjoy fighting and we enjoy even less, being verbally assaulted by people when we have no clue where they are coming from.
On Thanksgiving Rob did not call his mother. He knew she was having company and then going elsewhere for dessert. No one called us which was no big deal. On Friday evening we decided to get out of the house for about an hour after we accepted delivery of what was my grandmother's maple kitchen table. (It had belonged to my other grandma before her so it has extra special meaning to us.)
It needed some touch up stain so we ran out and got some. One of us got Dunkin Donuts. It was not the diabetic :(. We saw that between 8pm and 9 pm Rob's Mom had called here five times. She goes to bed at 9 and never left a message so he said it could wait until tomorrow. This morning my sister called and we were discussing my father's medicines and I got a beep. It was his mother again and I yelled up to him that he needed to call her back. She left a message for him in which she said she HAD to speak with him. He called her back and although I was sitting across the room I could hear her yelling in the phone. She said she had been trying to reach him for THREE days. Well, we were home all of Thanksgiving, have caller ID and voicemail and she didn't call that day. That left one hour on Friday in which we dared not answer. She said she was ready to call the police and have them check on us. My head was spinning by this time. Rob explained that he has a sick wife when she interrupted him and yelled "I have been hearing this for six months." Excuse me, for FIVE months I have been sick, trying desperately to get a diagnosis and improvement. I have had a few remissions from the bacteria attacking me while on antibiotics but please, do not act like I am a hypochondriac. She yelled and yelled while Rob gently tried to explain that as his wife I am his priority. She got even more furious and told him when he found a minute to call her and slammed the phone down in his ear. I was flabbergasted. What had this poor, caring guy done wrong? He had just spoken to her last Sunday, six days ago.
She has gone months without contacting us in the past. Rob dropped me off to see my Dad and ran some errands. She called his cell phone a few hours later and left a message. He wouldn't even listen to it, he just deleted it. This poor guy does not deserve this treatment. I do not need this kind of drama in my family or my home. I am not getting involved because of respect for Rob.

In addition to this, I learned yesterday that my aunt who is settling my grandmother's estate is not honoring my grandmother's wish for me to be the referring real estate agent. This is hurtful. My license is in New Jersey and while I could not list or sell the home, I could refer to an agent in Maryland who could. I would get a percentage of their commission which was what my grandmother wanted. My aunt worked very hard taking care of my grandmother. She is going through hard times herself and she is turning all this over to a lawyer to handle for her because it's easiest for her. I understand that and I would never say anything to upset my aunt. It just makes me sad that my grandmother's wishes won't be honored. I do love having her table here but it's bittersweet. I have some beautiful things but they were all received because someone "left" them to me.

I have had a rough day today. Some days I experience a lot of lightheadedness. This can be a side effect of my antibiotic but it can also be from the infection itself. I had hoped to be feeling better after two weeks but my cardiologist pointed out I have had this since July and it won't get better overnight. I still struggle at times for breath when I have to excert myself.

I want to have a gentle and peaceful atmosphere in my home. When Rob and I are here alone, we have it. Peace is a beautiful thing.

Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrr

When my niece gets annoyed and/or frustrated she says "grrrrrrrrrrrrrrrrrrrrrr". Today that is just how I feel. I am so frustrated over what the temporary disability insurance did to me I could scream. I tried repeatedly to reach them by phone. After putting in a dozen pieces of information you reach a recording that says all representatives are busy, call back. So I will be waiting who knows how long to see what they say IF they answer me. In the meantime the holidays are approaching, bills are arriving and I have no income. We are a couple who depend on that second income. We can pay our mortgage and utilities on Rob's check but for many other things, we count on mine.

As though that were not enough I have had a few night sweats again. This is not a good sign. They are a sign of having the bacteria. I have been on the antibiotics for two weeks now and by now they should have stopped. I am so frustrated over this I want to cry. When I told a friend and my mother they both launched into lectures that I am stressing myself out and making my self sick. Okay, I agree that stress does interfere with your body healing but certainly, stress is NOT going to prevent antibiotics from working in your body. My mother has always wanted to blame me for any illnesses I had. I don't know what kind of psychological quirk that indicates but even when I received a lymphomoa diagnosis she tried to tell me I didn't take care of myself. PLEASE!! In my opinion it is CRUEL to blame a cancer patient for their illness. Unless they injected themselves with cancer cells, this is absurd.

Today I want to crawl in/under my bed, pull the covers up and just say "enough". I am a fighter but even a fighter needs support and a break every now and then. I have a rash on my legs and thighs that burns. My intestines are out of whack and I have so much riding on whether or not the antibiotics can knock out this infection. As my Dad used to say "If you can't say anything nice, don't say anything at all." My mother should have been listening.

UH OH

Yesterday was a very busy day. I woke up at 5:30 and showered before I began the IV. Afterwards I wrapped a few presents and then went to the internist. I saw the associate of my regular doctor and she actually warmly hugged me when she saw me. They took lots of blood to check on the counts and see if they are coming down from the antibiotics. After leaving I came home and watched some tv before having take out for dinner and then at 6:15 p.m. I saw my cardiologist. I look in the mirror and think I look awful. I am pale but it's more than that. My cardiologist said I looked very good for someone with pericarditis. I guess that should have made me happy. Sunday everyone said I looked so sick and I agreed. I came home and had my second IV before going to bed.

This morning I got up early and began to search for the disability papers. I have not received a temporary disability check in three weeks. Amongst papers I found a notice stating they had ended this. My doctor had sent a form saying my TENTATIVE return to work date was in October and apparently, they lead them to terminate my claim. The really annoying part was that it was dated Nov. 4th and I only had the right to appeal in writing within ten days. Mind you, I was in the hospital Nov. 6-13. I arrived home around dinner time on the 14th and shortly later a nurse arrived and was here for over two hours at which time I went to bed. The next day when I woke up, my arm was in pain after having the line inserted the day before. I did not read/open mail. That would have been my last date to respond. I sat down and typed up an appeal , explaining all of this. I found a fax number on their website where forms could be faxed for submission and I faxed the letter of appeal there. Then I went to the post office and mailed the hard copy of it. I was home by 8 a.m. and waiting for the nurse to arrive and draw blood and change my dressing. After she left I found a phone number and called it. Four times I have been put through a lengthy que only to be cut off at the end telling me all representatives are busy and I must call back. I hope my letter gets a response. IF they do not reopen my claim I am in big trouble. That would mean NO disability from Oct. 25 until Jan. 4th or later. In the meantime I have prescriptions that I am filling, doctors that cost me copays etc. I had some (but not many) Christmas presents bought. I will not be able to buy more. I will need the credit card to purchase food and other expenses. IF the state of NJ has any sense, I am hoping they will accept and approve my appeal. Even if they do, I don't expect I would see anything for a few weeks. I am trying to remain calm about this. It's not easy.
The nurse also noticed I had a low grade fever. This really concerns me. If it remains or rises, I will have to contact my doctor. It might be a bug but it might mean the antibiotic is not working. If that's the case they will need to change it.
Time will tell.
Happy Thanksgiving to all.

A Busy Day

Wednesday was a busy day for me. Once a week my nurse will be coming first thing in the morning to take blood. This blood test shows the levels of the drug in my body and whether it might be too much. Because the line is used to receive the drug, they must discard blood first drawn then draw several more tubes. When I saw how much blood came out, I felt ready to be transfused. This blood was quickly put into an iced container that Fed Ex came to pick up and transport overnight to the lab somewhere in the south. It's hard to understand all the insurance contracts with different providers. I am absolutely thrilled with the company they are using for the nursing/infusion. There are people who call me constantly with updates and the nurses are wonderful. I am very concerned about germs and they take every precaution. The line which comes out of my arm is basically a tube coming out of a hole. It must have a dressing change at least once a week in which the area is cleaned with alcohol. You can imagine how this burns. Then it gets covered with a tegaderm which is almost like a Saran wrap but sticks tightly to your skin. The portal hangs out and must be tucked up under something like a net stocking to keep it from being pulled.

Yesterday after the nurse left I had so many errands to run and also spent about an hour on the phone with the doctor's office. We had to discuss when I would be returning to work. Although financially returning now would be ideal, it just isn't possible. My morning infusion takes about two hours and so does the evening one. They are given twelve hours apart. This means the second one takes place from 8:30 p.m. until after ten. In addition, the nurse comes once a week (which is after nine a.m.) and on Fridays I get a delivery of the supplies, including these balls containing the antibiotic which must immediately be refrigerated. I will have to take pictures and post them. I am fascinated at how they make this so user friendly. When these treatments stop, the line must also be removed. It was decided I would return to work after the New Year. It made me sad in a way, but right now regaining my health has to be my top priority over everything else.
After the phone call I went to my mother's to pick up a bank deposit to make for her. She surprised me with fried tomatoes. How I love them. I used to sprinkle them with sugar but felt that an artificial sweetener would not be good so I had them plain and they were very good. She then gave me a small piece of cheesecake and I was on my way. After stopping at the bank drive thru I went to the grocery store. I just needed to spend about twenty-five dollars more and get my free turkey. I carefully added what I was getting and went to the check out. I'm sure people would have found it strange had they been watching me. I am not allowed to pick up more than ten pounds with my right arm with the PICC line in it. It's sore and I think five pounds would be difficult so I am picking up everything with my left arm. I proceed to the check out and the check out person asks me if I would like to redeem points on the roaster chicken I have picked up for dinner. Sure. She then checks me out and tells me that I am three dollars short of reaching the goal for the free turkey. Then I realize that the points I just redeemed messed me up. I pay for those things, and ask her to watch my cart so I can run back and grab something for three dollars. I quickly find a spice I need and run back. Have to wait in line behind two people but then pay for the spice and get my fifteen pound free turkey. Order is returned to my world. I think go out to the car with my plastic bags (I use recyclable cloth bags but I have forgotten them) and load this all into my trunk. I get home and again with my left arm carry it all in the house. It's not really that much stuff and only the turkey is heavy. I just get it all put away when I received two phone calls. One from my ex husband's cousin who I have not spoken with in years. The ex changed his phone number and somehow he tracked me down (didn't even know he knew my new last name) to ask me what had happened and if I had his new number. It was nice to speak with him. Just half an hour later a cousin I had seen at my grandmother's funeral called me. We chatted for a long time about various members of the family and he told me about a web site he is setting up. I may contribute stories about my great-grandmother.
My right arm is very sore. Although I tried to avoid using it, you just can't. It was a long and tiring day but a good one.
At Thanksgiving time I find myself thinking of all that I am thankful for. There is just SOOO much. Each and every day I am thankful for the gift of another day. I am grateful for another Thanksgiving. I am most grateful for the family and friends who show me the love. Even the small things are great when done in love.

A Diagnosis

As most of you readers know I created a private journal and for those of you who read that you already know what I am about to share here.
Since July I have blogged about the constant sickness I have endured. When I think back it all began in July following a dental cleaning. It started out with a rash on my leg which I was given cream for. Thing is, the rash was warm to touch and quite large. Hindsight is 20/20. I was diagnosed shortly afterwards with pneumonia and given antibiotics which were appropriate for that ailment. This was confirmed by xray as well as my later diagnoses. Since July I have been fatigued and short of breath. About two weeks ago Tuesday my internist requested another CT scan with contrast to see what my lungs looked like since I was not getting better and now a low grade fever and nightsweats had been added to my ailments. The CT scan showed a new pneumonia and plural effusion. I made an appointment with a lung doctor I saw the following Friday. He told me to go to an ER and get admitted that I needed intravenous antibiotics and that it was not normal to have pnemonia and breathing issues so frequently that something else was going on. I went to the ER and was admitted. They did more xrays and blood work and saw that my white count (indicating infection) was up again. The lung doctor was called back in and this time they added an infection disease doctor, a wonderful woman Dr. D. She immediately began to research the past and explore possibilities. The lung doctors were also helpful in ordering more tests and suggesting things. They did an echo on my heart and the results were nothing special but at that time they called in my cardiologist of five years Dr. Jack. You have to love this man. Dr. D had talked about an ETT where they basically go down your throat and use a sonogram type device to see the heart much better. Since I have an artificial valve they felt this should be done although none of them felt the odds were great that this was the problem. Dr. Jack said since several of them had thought this was something that should be done and I had the artificial valve he suggested we do it. The following morning I was taken for the test and although another doctor performed it, Dr. Jack was there and observing for himself. They found what the problem was. Irony of ironies, it was NOT the artificial valve that was infected but another valve, the mitral valve. Yes clearly there was something growing on it. That had been spilling into my blood and lungs causing problems. The few weeks I was on antibiotics got me a bit better until the last four weeks when things became even worse. I was relieved, yet scared, to know the diagnosis. What this meant was the following morning I had to have a PICC line inserted as I would need intravenous antibiotics for the next six weeks. I was given options. I could go to the hospital twice a day to their infusion clinic (visits had to be twelve hours apart) and spend a few hours there each visit OR I could have some nurses come to my house and teach me how to care for the line and do the infusions myself. Moment of panic set in but then I remembered that when my son was on chemo I had cared for his line, flushed it and this would be similar. I had the nurse come and the supplies were delivered shortly after I arrived home Friday in the afternoon with my new line in my arm. A hole in one's arm causes quite a bit of soreness. Kathy, the nurse showed me how, sat with me for the hour and a half it took for the infusion, showed me how to do the final flushes and close the line back up. Saturday and today I did all the treatments on my own, although a nurse did come to change the dressing on Saturday. That I am not permitted to do.
I am hoping/praying/meditating that these antibiotics will take care of this.
If not, I will have some serious decisions to make. Periocarditis is not something one can ignore. It's too soon to be feeling better but I can breathe easier. The fluid that was in my lung is gone now. I can walk upstairs without nearly passing out. I feel I am on the road to recovery. At times I become overwhelmed thinking about my grandmother who is no longer here to offer me her support and unconditional love. The thoughts of what could be are a dark place I don't want to visit. I've had open heart surgery and a valve replacement.
Positive vibes, caring thoughts and prayers are welcome. I will keep you updated as I can. I have to go back to the hospital tomorrow for bloodwork and will need that twice a week for the next six weeks.
Mostly, I am so grateful that the team of doctors found what was wrong and hopefully in time for the antibiotics to work and fix this problem once and for all. Either way I know this: I am one tough cookie. I will do whatever it takes because I love life and I'm not going to leave it without one hell of a fight. That you can count on.

Update

I got an authorization number today from my health insurance company for the CT scan with contrast. It looked so sketchy stating it was no guarantee of payment. Sheesh. I have my pulmonary lung fuction scheduled for Thursday.
After reviewing these two tests, the pulmonologist will decide what comes next. I persist in having the low grade fevers and the drenching sweats at night. I wake up freezing and soaked. Nothing is new. I am still lethargic and often when I try to catch a nap, the phone will ring. Usually something that I don't want to deal with. Going to go to bed soon.

There will be an entry in my private blog which I don't feel comfortable posting here. IF you wish to be added to that blog please click on the dog link and email me.

BRRRRR It's Cold!!!

Yesterday I ran out to get milk and the minute my ankles hit the chilly air I knew the temperature had dropped quite a bit. It snowed (although I think it was rather light) in Northern Jersey. It snowed in New York, although not in Albany where my sister is. It rained on and off all day yesterday and there are some sprinkles today.

My grandmother's funeral is Monday. We are heading out at 7 a.m. to go about two hundred miles. I find it a bit nerve wracking to have to wait so many days before the funeral but there were people coming from all over and the only other time available was Saturday at 10 a.m. That's early when people are coming from two hundred miles away. With my Dad in his present condition, we are going to get home quickly. He is angry that he is not being taken but that would be impossible. My mother had to get two different nurses and is having their friends, a couple, stay with him throughout the day as well. My father seemed unable to say anything yesterday that we could understand. It's frustrating for both of us.

I woke up suddenly at 5 a.m. and the asthma was kicking in. I grabbed the inhaler then turned on the shower and between the two it got quickly under control. It's hard not to feel a moment of panic now when I have trouble breathing. I instantly fear a trip to the ER, or worse, another hospitalization. I got my disability papers and I will get less this time because I received disability back in February for eight weeks. They base it on my yearly earnings and so far I am down seven thousand from last year. Getting sick is expensive. I really can't afford it.

Rob is going to be cooking tonight. He makes a recipe we got from Wegman's Menu magazine. It's sausage (using a low fat version) and peppers. It's really delicious and you have it over pasta. I use whole wheat now. Since I have been up since 5 a.m. I may need a tiny nap soon so that I can be awake and alert to enjoy my dinner. Hope you are all having a wonderful weekend and staying warm. Yesterday I spoke with my friend who is in Ft. Myers, Florida. She said it was 91. Is there anywhere that has a steady temp of mid 70s? That's my ideal.

She's Gone to a Better Place

Gang, my son Tom and I

Yesterday (Wednesday) at about 3:30 p.m. my grandmother left us. My aunt and cousin were by her side and said it was so gentle and peaceful a passing. She smiled, let out a breath and gently went to join her husband, who she said was waiting at her beside for days. She commented that he looked more handsome than ever. They were married nearly sixty years and in all that time I saw them argue twice.

Clara Virginia Wolfe Cosgrave July 15, 1912-Oct. 14, 1009

5 yrs ago (I have lost weight since this photo)

When I think of my grandmother (my older brother didn't say grandmother and he nicknamed her "Gang" which stuck for all nine of her grandchildren), I think of two words: unconditional love. There is nothing else more that a child needs than unconditonal love. My father was in the Navy and he traveled a lot. Many of my younger years were lived in her house, which by today's standards would be considered a cottage. It had two bedrooms. They bought the house brand new. At one point they put a small addition on it changing the kitchen to a dining room and adding on another kitchen, which was over the garage. The tiny lot had a steep hill and the yard was fenced in to keep us safe. My grandfather was a police sergeant. He was one of the first motorcyle police on the white Harleys for Montgomery County, Maryland. At that time, policemen didn't make a lot of money but whatever they had was shared and stretched and all were welcome in their home. There were eight children in my grandmother's family and often for Christmas she would prepare a huge meal and they would wander in throughout the day. She was a wonderful cook and no matter what she had, it was turned into something delicious. Gang was so proud of her two daughters which were twelve years apart in age. When we lived there at one point, my brother and I slept in the dining room and my Aunt Judy was a teenager. How I idolized her and her records. She was a huge Elvis fan. I have only wonderful memories associated with my grandparents and their home.

My grandmother lived to be 97 years old. That is a full life and she had a wonderful life. She was able to remain in her home until the very end, a promise made and kept by my Aunt Judy. It was a huge sacrifice for her but she made it.

The final plans haven't been made but we will be going to a funeral service and burial only in Frederick. All Gang's family is buried there and she will be laid to rest under a double heart headstone with her Les.

I feel so very blessed to have had her for each and every day of my life. I was born one week early of her 42nd birthday and I was her first granddaughter. She said that was the best birthday present she ever got. Gang was there for me when I came home from the hospital after my spleen was removed, was there for some of my radiation treatments, was there to celebrate my son's birth, was there to encourage my son with his chemo treatments and was there when I had my open heart surgery. There was not a time I needed her that she was not there. Of all the grandmothers I might have had, she was the perfect one for me. No matter how much I grieve her loss, it will never diminish what she left me.

I am a better person for having been a part of her life. Isn't that a wonderful legacy?

Autumn Has Arrived

Yesterday I decided to run out to the local grocery store for a few items. I wore my leather clogs and once my feet hit the outside air a chill swept through my entire body. I had a jeans jacket on over a sweater but even with the heat on in the car, I was not warm. I quickly moved up and down the aisles and got back home so I could put on the thickest, warmest socks I could find. What a great feeling to have your cold feet warmed up. It is really cool and not very sunny today.

My mouth has improved greatly which has brightened my outlook. I feel shakey and it is difficult to write with a pen. I have to assume that is steroid related. I am still using two inhalers that contain steroids but I finally ended the pills.
Last evening I received a call from my cardiologist office. I had an appointment and with all else going on I had forgotten. They rescheduled for next month and were very understanding. I need to call the dentist and see if he can squeeze me in. I am a few months overdue and now want to be certain that my mouth is in good order. I get my teeth cleaned three times a year per doctor's orders.
Last night I had a nice meal ready when Rob got home. Haven't done that in a very long time. Usually he is home two hours earlier than I am. He worked an hour overtime which gave me longer to prepare. I made a delicious mac and cheese with smoked sausage in it. I make it the old fashioned way, using a white sauce that I make. Yes, I know, not very healthy but very tasty.
I made an extra and he delivered it to my parents. Tonight I am thinking I might make chicken marsala. Haven't had that in a long time. I really enjoy cooking when I have time. When I am working that usually means weekends only. I am hoping I will be going back to work rested this time. I am still tired, still having some restless nights which sometimes include waking up in a sweat. I haven't slept through the night in many months. I hate waking up so tired. It feels like I drag through the days like this. I keep telling myself to be patient and to just take it easy and let my body recover. I have never been good with delayed gratification. You would think by now, with all the times I have been forced to have patience, I would be better at this.
I am thinking of treating myself to a new down comforter. The Company Store is having a sale and there's are the best. My old one is worn and my darling dog grabbed the end with his teeth. Although I sewed it shut again there was a dusting of feather/snow everywhere and that part seems empty. There are few feelings like slipping under a down comforter on a cold winter evening. They are so light on your body but keep you so toasty warm.

Serenity Now

I am a huge fan of Seinfeld and if you are too you will get the title.
This weekend my sister came into town and I was so excited she was coming. Unfortunately, my brother's wife also decided to pick this weekend to stay at my mother's. The real rub is that SHE never called my mother, she had my brother TELL my mother she would be staying there. My mother immediately told my brother "this is NOT a good time for her to come." My brother said he passed that message on but she still came. (She has not spoken to my mother in months) My brother couldn't give my mother any details. My mother, who has been dealing with my father and my recent illness and her mother being in hospice care is on maximum overload. Said sister-in-law did not give my mother any agenda and showed up Friday night to sleep there. My mother who never has a bad or confrontational word for anyone has cried more tears over her frustration in dealing with this. She is very frustrated with my brother for allowing his wife to do this. We have been waiting daily to hear that my grandmother has gone. My sister who always looks forward to the time with my parents, and time with me has had to endure this visit as well. My sister had surgery about a month ago and is not 100% herself. You have to wonder why someone would impose themself on people under stress. I guess they just want their own way and don't care how they inconvenience others.

My mouth sores have sufficiently healed so that I am down to two remaining. Yesterday I was actually able to eat a meal! I had made some London broil and was able to slice it paper thin and have it with some gravy. It was pure heaven. I also enjoyed a few crackers with cream cheese and olives. The most troublesome of the sores is on the top tip of my tongue. It was the first and will be the last to heal I think. The thrush has cleared up nicely. My wheezing is infrequent now and I am deffinitely getting stronger...finally. I am far from the normal me. My legs still feel weak. I have lost over ten pounds in the past few weeks. I am still weaning off the steroids and have boughts of emotional or moodiness though they quickly pass. I am hoping my white count is dropping. I have not had a lot of sleep the past two nights. I have been up since 5 a.m. when a neighbor's car alarm went off. Yesterday I was up at 6 a.m. and that was the first day since I came home from the hospital that I didn't have a nap all day. The phone rang at least twenty times yesterday.
My beautiful Fall is here. I am so happy so have the brisk morning air. We have some Halloween decorations out. Not decorating like I used to. I live in a development and will have about one hundred trick or treaters. Most start about 4 p.m. when I am still at work. I already have treats purchased and waiting for my little goblins. I must say that these children are so polite it is a joy to see them.
Lately I have been keenly aware of manners and the lack thereof. Certain visitors to my mother's house are really annoying me. They don't call first, they just show up. My father is on a regminented schedule. They come at his mealtimes (or ours) and stare while you are trying to eat dinner which often then gets abruptly halted. Do people possibly think this can be appreciated? I made THREE attempts to visit with my Dad when people showed up, unexpectedly and stayed. I would never a. drop in on someone or their family without the courtesy of a phone call or b. drop in empty handed at meal time (several of his visitors do this as well.) Each time I left, not wanting to be near people I don't know are not sick. These are not young kids either. In fact, several are senior citizens. Sorry I will now put my soapbox away. I just hate illmannered people.

Coughing but Better

Remember Sesame Street? Today's show is brought to you by the letter C as in cough. I wish I could stop coughing. In the morning I use the Advair inhaler and then as needed I use the Proventil. Both seem to be giving me heart palpitations which wore masked by the steroids. As I reduce them, the palpitations are more present. Overall I am feeling a bit stronger each day now. Now I want to get my focus over to the good stuff of the Fall.
This summer was a huge disappointment to me. It's as though it was not. I never had one day that I truly felt well. I did not go out to eat at the shore, walk on the beach, any of the things I usually do. Since working my present job I have not had ONE vacation day. Each day off has been used for illness (except for two days where I rushed to be with my Dad after one of his strokes.) I am so hoping for a mini vacation but not sure when/if that will happen. I am deciding that I must have some quality time/relaxing hour respites. This weekend my sister is coming. Haven't seen her in a month. She is always a huge help to my parents. We fit time in to visit and those are rare and treasured times. This weekend is a holiday weekend for her so she will have an extra day here. I am determined to find a few hours where we get out for a bite to eat and some sisterly chatting.

A brighter day

I am finally starting to get better. The sores in my mother have lessened. I still have some. The ones that are most problematic are in my throat now. My tongue is finally so that I can eat. There is some discomfort but after losing eight pounds over the past two weeks I can finally eat something and it doesn't all taste like chalk. Woohoo.
I am still very tired. My blood tests show my white count is still quite elevated. I am to be resting the next few weeks. I am being weaned off the high doses of steroids that were first iv, then oral. I am continuing to use two steroid inhalers and will have to for a while. For the most part I am not wheezing but there are times where I still am. The doctor is disappointed in that. When I lay in bed at night it;s the worst. The inhalers help but they cause bad tachycardia for me which is especailly troublesome when trying to sleep. Do I ever sleep. I have never in my life slept this much. If I sit still for ten minutes I nod off. I nap throughout the day. Twice I have gone to the grocery store in the past few days. It is very difficult to have the energy to get a dozen or so items. When I am home and put them away I must take a nap. I am not used to this. Today for the first time in nearly a month I was able to go visit with my Dad. His speech and confusion seems even worse. At least I got to spend about an hour with him before having to come home. Not sure how long this huge energy issue will last. I am hoping that when I have my next blood work done on the 19th that the white count will be significantly reduced and my energy returned. Coming off the steroids makes me feel strange at times. I have gotten highly agitated over minor things which is not like me at all.
I am going to see what's on TV and then call it an early night, as I usually do.
My Fall is here and I am loving the cool evening breezes. Sitting here with the window open and soaking it up.

May I have some cheese for my whine?

I have been sick over two weeks now. I am tired of being sick and tired and mainly of these God awful sores all over my tongue and down my throat. Nothing is helping them. I am also weening off the steroids. I feel like something which is not me. I am brought to mind over and over all the sufferings of the many friends I have and sometimes it brings me to tears.

My grandmother is hanging on in her home with my aunt caring for her. The hospice people say she will not let go, she is fighting every second. She is 97 and I would think she would be happy to think that rest will come and peace. I feel so badly for my aunt who is not well herself and trying to take care of someone who is medicated and argumentative. It almost makes me glad that I will probably not live into my elder years.

I am desperately searching for something to eat. Firstly, everything takes chalky and awful. Secondly even yogurt hurts to eat. I had burns in my mouth from radiation and the doctor had me crush aspirins in applesauce to coat my throat so I could eat. If I get desperate enough perhaps I will try that. I pray I never have to take such high dose steroids again but it seems likely. I am going for a huge bloodwork up on Monday. My white count needs to come down significantly. I'm usually an optomistic person and a fighter but right now I feel so weak physically it's hard to find that grit that I can usually grasp onto. Maybe tomorrow.

Posting For Nelle

Most of you know Nelle was sick last week. Early Monday morning she made a trip to the E.R. with respiratory distress. She was admitted with bad bronchitis and breathing problems. She is still hospitalized but hoping to come home in the next day or two.

She is now suffering from 'Internet Withdrawal' and will be back online ASAP.

(Posted by Rob, her husband)

Another Round with Illness

Last Monday I left work with a terrible sore throat. It felt like it had razor blades in it. I woke up Tuesday and decided I could not go to my job and speak all day on the phone with my throat hurting so badly I could not swallow at all. I had another ordeal to deal with. The IRS had sent a letter saying that my 2008 taxes were never paid. I had ignored that first letter because I KNEW they had been paid. Well when I received a REGISTERED letter from them Monday evening I learned otherwise. Thankfully I was able to call them on Tuesday. What I learned was that my accountant had sent me TWO sets of vouchers (which get submitted with payment.) One was for the full amount to be paid now and the other was a set to PREPAY for 2009 the amount divided by four. I wrongly assumed that the four vouchers were the choice of making several payments instead of one big payment. They told me that they would put a hold on the account. They were going to levy us. I told her that I would get the money to them ASAP. Thankfully I had an emergency account that I could take the money from and send it. Here is what I consider to be the ridiculous part though. Once I explained and they realized what the problem was they said the money could NOT be moved from one account (2009) to 2008. I explained we will not have this problem and the money would not be due then as my husband was out of work half the year. "Sorry" she said "but you did send the payments with the vouchers you did and wrote the voucher numbers on the checks as well."
I called the accountant and at first I was annoyed. I reread the letter accompanying the vouchers and there was a reference to the vouchers but for someone like me who had no idea, I don't believe they explained it adequately.
He offered to try to assist me but I told him since I had been threatend I was not comfortable doing anything other than complying. A few days later the logic of the thing hit me. I should have known money for last year would be 2008 NOT 2009. So next year I should be receiving a nice tax refund. Unfortunately, if I run into an emergency that won't help me.
But I digress..........getting back to work. On Wednesday I went in and managed to blow my nose several hundred times and annoy all my coworkers that I was there. They all know the strictness of our attendance policy. The one girl who was first sick (and was there each day for five days coughing and sneezing and spreading germs) is a single mother. She cannot afford to lose her job for too many call outs and our boss told her if she left sick it would count against her.
The boss got sick first. He came to my desk several times and then by Tuesday I was pretty much sick. Somehow I made it through Wednesday but Thursday I woke up feeling rather dizzy. I had breakfast, went to work and seemed okay until I stook up to walk somewhere. I slumped to the floor, feelilng I was passing out. I came into the meeting room and my boss and coworkers were concerned. I was wheezing when breating, my nail beds were purple and my hands were shaking. They asked if they could call 911 for me. I begged them not to. I got my doctor on the phone who told me to come right in. She was upset when she saw me saying I should have come in sooner. My chest sounded like the right lung had pneumonia again. She gave me meds for pneumonia and sent me to the hospital. The hospital said I did not have pneumonia. She put me out of work Friday. I am still running a fever, coughing uncontrollably and worried about not going to work. I wake up at night, soaked with sweat. I am just never catching up. Because of the attendance policy so many sick people are at work. This causes other people with health issues, such as myself a major problem.
I have been awake an hour. I need a snack and more sleep. I am hoping to get better. All summer I didn't have one day for the beach. All my work times goes to sick time.

Rain slowly clearing

We will be leaving shortly to go have dinner at my mother's. My sister has invited us, my brother who lives next door and his wife. I have made a few simple things to take with us. This morning I suddenly realized that I had not had my INR tested in nearly seven weeks. I am supposed to do this every four weeks and be rigid about it. I messed up. Went to the hospital this morning and got that done. There were police officers all over that area checking to see if people were on cell phones. I have a bluetooth device for when I am in the car and need to be talking on the phone, which I don't do often. I was pulled over and asked if I was on the phone. I told the officer I was not and offered to show him my cell phone was in my purse which was unopened. He told me it wasn't necessary and sent me on my way. I then mailed bills and went to the mall. I used to love Macy's. Now they have coupons that increasingly limit what they will cover. I waited in line ten minutes only to be told that it would not cover a shirt I was buying because it was some kind of special buy. How would I know this? So...I went back and found other things that would be covered and stood in line again. I had forgotten to bring my card so each purchase required fishing out my driver's license and feeding my social security number into an electronic pad. I had a gift card that I was finally able to use and got some good deals but the lines were not easy. People tend to get testy in these situations.

I wanted to put a link here to the most wonderful blog where my friend (and artist) Judith HeartSong published pictures. THE ART OF TEA is a blog showing the clever and creative minds of several artists. Some of them defy description, at least by me. We own several teapots and Rob loves to use a diffuser and make a strong pot of tea. I also like tea but do not feel the decaffeinated ones are as good.

It is wonderful to have another weekend. They are my job now. That is when I can take a deep sigh and relax. During the week life is much too hectic. I hope all of you who are reading this can take a deep breath as well and enjoy some ME time. We all need that. Have I told you lately I appreciate you? If you take time to come here and share my life, I appreciate that time and YOU.

A Fabulous Day

Yesterday Rob and I had a simply marvelous day. It began with pulling our Halloween stuff out of the attic. We have two containers full. Each year we usually add one thing and often they are things gifted to us. For my birthday in July my sister-in-law Stephanie gifted me a black cat decoration. Rob loves all cats and we use them a lot for Halloween. After we did that Rob took down and washed the living room miniblinds. We have found using dish detergent in the tub works best. I took down my little valances which I love and saw that the sun has ruined them. I need to find replacements. That lead us to go to Bed, Bath and Beyond and they had nothing I wanted but we ran into a former next door neighbor and her daughter. This was a two year old when we met her and I was shocked at how lovely and tall she is. We then went to the mall and had a delicous lunch at Ruby Tuesdays. I had a glass of sangria that was delicious. We picked up some soaps and candles then I called my brother who lives about ten minutes away. His wife was seriously injured in a car accident about a month ago. She is very sweet and this has been so hard on her. She has had to have artificial and human bone put into the leg. She still cannot put any weight on the leg and is in a wheelchair. She has to sleep in a hospital bed and isn't allowed to go in public because she cannot afford to pick up any germs. We had a nice visit and I took her a fall candle. On the way home we swung by the Coach Factory outlet. I had wanted to go there but heard it was still very expensive. I was talking with a coworker on Friday who told me she picked up a pocketbook for $80.00. I was really surprised because in the mall they are at least $300.00.
We pulled up and there was a LINE of people waiting to get into the store. They said it was due to fire hazard safety. I waited about ten minutes and found a beautiful handbag with all the discounts I think it was $120.00 but it is all leather. It is beautiful. I have never had a Coach bag and always thought I would like to own one. I decided to splurge on myself. I rationalized this because I had used all my birthday money to pay bills. Now I am pretty much caught up.
We came home and just relaxed. That is something I don't get to do very often.
I am going to finish putting out some Halloween decorations today. Hoping for another relaxing and enjoyable day. We wanted to have my mother take Dad to the beach....there are areas on the boardwalk you can sit and it is wheelchair accessible. We can take his aid along as it is only about a 40 minute ride. My mother thinks it would be too much trouble. She is also embarassed about how my father acts. That really annoyed me. I told her people can see he has had several strokes and anyone who would be bothered by that does not concern me. She has always been so concerned about appearances. I don't know if her generation was raised to be this way. Many of my friends mothers are the same way. When my father gets upset he curses repeatedly. This doesn't happen that often but she just gets beside herself. Another thing I have never understood, these are just words why does she percieve them as being so powerful? There are other words I detest but they are usally words used to insult, hurt or show prejudice to people. A word used to express anger or frustration does not upset me. Anyway, hoping for another good day. I have really enjoyed this weekend thus far and now for the bonus day.

private journal

I am going to be making a private journal with entries that will be shared with friends as opposed to a public journal. I am going to be setting that up today and all readers I currently have their emails for will be automatically invited. I do not have everyone's emails though....so if you would like to be added to that list just send me an email to: McJerseygirl@gmail.com and if I know you, you will be added. The explanation of why I am doing this will be the first entry.
If I have neglected to send you an invite and you are a regular reader it is only because I don't have your email addy so please send it. I am not going to stop writing here, just things that are more private will be in the other journal.
Have a great Labor Day Weekend!!!!

September 3rd and 4th

Today is September 3rd. The first man I fell (really fell) in love with, passed away about seven years ago, before Rob and I were even married. We had met as teens and as I grew up a bit I could see things that were going to be real problems for us. I broke up with him (he did not make it easy) and shortly afterwards married my first husband. He begged me not to marry him, telling me that he was the wrong person for me and in hindsight, he was right. I spent many years wondering how things might have been. He found a woman who was right for him and had a good life with her and their two sons. Sadly, he was a heavy smoker from an early age and this lead to him having lung cancer. While he battled it courageously from those I talked to, it was probably diagnosed late. I think of him throughout the year but especially on September 3rd. This would have been his 58th birthday.
Tomorrow is the anniversary of my son's diagnosis with leukemia. It was the day after Labor Day that year. I will never forget seeing the school buses (the hospital was located across the street from a Catholic school). I was keenly aware that my son might not start school with them. Later that morning we learned he had leukemia and that he needed immediate hospitalization to begin an intensive chemo regimen. What was not anticipated was the reaction his body would have and for the next four and a half months we practically lived in the hospital. The few times they sent him home did not last and within a day or so we would be back. After the second month I came to feel that the pediatric ward (adolescent wing) was my home away from home. The other mothers and nurses were my support team. Many friends shied away, and the ones who tried to keep in touch, simply didn't understand. He never was able to go to school that entire year. He did get "passes" from his doctor to attend a bonfire and such activities. I will never forget driving him there and parking where he couldn't see me...sitting there and crying for joy that he could have a few hours to be "normal". Every year since then, when I see the school buses picking up the kids that first day, it is very difficult. This is the first year that I did not break down and cry. My son is still with me. I am so very fortunate. He will never be the person he was before. He has an overwhelming sensitivity to the plights of others which sets him apart from most people. He is keenly aware that he is different and thinks people look at him differently. There are no outward signs except for his scar where his Hickman line was removed. Most of the scars are deeply hidden. He can talk to me about it, knowing I went through my own battle. I know this. My world forever changed that day. Facing the possible mortality of your child is overwhelming. I was luckier than many because I still have my son. I will always be keenly aware though that none of us have a guarantee. I want to go back and be the naive young woman who never had to think of those things. A part of my innocence left that day. I mourn that each year around Labor Day. It was better this year though, for the first time.