Saturday, November 28, 2009

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.

Friday, November 27, 2009


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.

Tuesday, November 24, 2009


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.

Thursday, November 19, 2009

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.

Sunday, November 15, 2009

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.