Home Again

I am home once again. On Tuesday I must call the heart doctor at Univ. of Penn. to get a quick appointment. Then I must go there with my records (including DVDS showing the procedures I had done) and he will render his opinion. This is doctor is an expert in this field. I have a valve that was infected in the Fall of 2009 and it's damaged and now the pressure in it is high. The fluid was a result of that and the fluid pushed that up higher and higher until the three litres in total were removed. Now the pressure is lower but the problem must be fixed so that I don't end up in the same predicament again. I won't go into all the details here, there are other things as well to deal with.

They believe if they can find and treat the reason for the pulmonary hypertension it will stop. If not, I will have to deal with the same issues over and over again and I will never be free from oxygen.

I am currently breathing much better....I only need oxygen when I am excerting myself. Today I have been able to do some light cleaning, even bending over and been alright. To go to a neighbor's I did need the portable unit but was able to breathe well with it, unlike before where even with the oxygen I had real problems. I am in a much better place right now than I have been. All my hope is that the doctor I meet there will know what the best course is for this. I might need a cardiac catherization to determine whether or not a surgery is needed. He may decide not to do that since my mechanical valve but pose a problem in doing that. I will keep you posted. I have been here before, faced with what might be a large surgery that I really didn't want but knew I had to have. I got through it once and if necessary, I plan to get through it again. I'm a tough old broad. lol

Testing and Proceeding

Today I am having a chest tube put in. They didn't do it yesterday after doctors decided on a lesser invasive tube. I found out a lot of information yesterday. I have pulmonary hypertension and other things. After yesterday's information I am changing cardiologists.

Back in the Hospital

Friends,
On Thursday I went to see the lung doctor and when she saw the difficulty I had breathing and knowing from the xray I had another pneumonia, she sent me to the hospital to be admitted. I was actually relieved because my breathing had become so difficult I worried I would have a crisis while home alone. In the ER they ultrasounded my lungs and saw that all the fluid was back already. Since them, more has accumulated and today after seeing a chest xray they ordered a CT scan. I have some very excellent lung doctors brain storming. While they want to remove the fluid, the bigger question is why does this keep happening? There can be several causes and it's not black and white. There may be multiple causes. I am having breathing treatments every six hours and they have helped the lungs not feel so tight. I cannot be off oxygen for more than a few minutes without a problem. They believe this is a result of the fluid issue. I am really tired. I was in a room with a woman who was calling for help every half hour the first night and got little sleep. I am now in a room by myself, at least for now. Last night I had five hours of consecutive sleep. It was wonderful. Now I have to wait for the doctors to decide what the best way to proceed is. They are talking about many things and I don't want to discuss them until I know something is set to happen. Some of this is scary. I just have to trust in them (and of course I rely on my prayers and meditation.) They think they have a few options and want to do only what they have to.
Many of you are on my Facebook too and follow updates there as well. In the real world I have lost a few friends this year. It's okay though because I know that I have many friends out there who love me and understand what the last two years have been like for me. I am still grieving the lost of my father and dread the upcoming Father's Day. My mother is very disturbed over what is happening to me and cries frequently. I only tell her what she needs to know.
I will keep you posted. Thank you for following my blog and checking in on me.

Breathless in Jersey

Since Monday I have been experiencing the worst shortness of breath yet. I called my lung doctor Tuesday and she had me go for a chest x ray (thinking that the fluid was already back.) I had to have someone drive me there as I couldn't make it into the building alone. They told me to go right home that my doctor would be calling me. When I arrived home the doctor called but told me although there was a small amount of fluid, there was a new pneumonia brewing. Thankfully we caught it early. She called in antibiotics for me and I am doing four nebulizer treatments each day as well. I had to crank up the oxygen a bit. If I sit perfectly still I am okay but the minute I move I can feel the difficulty I have breathing. I am so exasperated. I had an episode where I was going to go to the pharmacy alone and became overwhelmed with panic when I got in the car with the portable tank but couldn't catch my breath. Rob stayed home from work today to take me to the doctor's. I don't know what she will say or do. I just know that not being able to breathe has become a real source of anxiety. I hope to get some help/answers today. It finally stopped raining and perhaps if the humidity lowers that alone will make a difference.

Have Tank will Travel

This constant drizzly weather with no sun is really getting to me. Today I am going out to a store and buy something. I have no idea what I will buy but I need some retail therapy. Really I do.

When Rob is with me it's just so much easier. Even though I have the handicapped parking pass often the walk from there into the store is a long one. Rob will drop me off at the door where I will find a cart and place the 7 lb. oxygen tank inside the seat meant for a child. My purse goes in there also. Then, with slight leaning on the cart I can shop. I really wish I knew of a creative way to dress the tank. It's in a black laptop type carrier. I am finally used to people staring at it and I heard someone murmur something about smoking to their shopping partner. Hmmm I wish they would have asked me what was wrong. Not everyone using oxygen was a four pack a day smoker.
My knee has pain from the NUSTEP machine and five minutes on the treadmill. Ibuprofen helps. I am thinking of ordering a custom bumper sticker that says "Girls with oxygen rock" or something like that. Suggestions will be given serious consideration. I have decided the best way to handle it is with humor. If you can't laugh at yourself you're in serious trouble.

Disappointment and Frustration

The fluid didn't show any significant information. If the protein was high it meant one thing and low another but it was right in the middle. If anything, it leaned toward being the fluid which was inflammatory, which would have been caused by the pneumonia. I expressed my deep frustration to the doctor about not having a specific diagnosis or a plan on how to proceed. She did the tests again to measure and evaluate and discovered that my lung volume is less than it was a year ago. (This is what I have been telling her that I cannot take in the air I used to be able to.) Now that the tests showed exactly what I had been saying, I think the reality set in.
Where do we go from here? I am continuing with the lung therapy and hoping that it will help. The doctor is going to be investigating other options, including some sort of surgery to deal with the inflammation of the lung lining. This is something not to be taken lightly and she wants to see if there are less invasive options. The thought of a lung surgery scares me. These are lungs which easily get infected with pneumonia. It's a lot to deal with. I asked her if she thought I would ever be able to wean off the oxygen. She thought at some point I might be able to but admitted that this recovery has been the hardest for me. Last year's bout I was much sicker, in critical condition and seemed to make a better recovery. This time I was only in serious condition in January however it was a very large pneumonia in my right lung, which seems to have a more difficult time.

I am really frustrated. I hated having my suspicions confirmed about the volume loss. I feel as though I am mourning the loss of healthy lungs but telling myself that this is premature. Father's Day is coming and they are showing commercials and that really sinks my spirits also.
It's so hard not to know what's going to happen. There are some many questions that I have and a part of me is afraid to ask. It's clear to me that even the doctor doesn't have solid answers. Medicine is not an exact science. Sad but true.

Hopefully the BIG Day

Today I am armed with printed out reports that I have found about the effects of radiation on the lungs. I meet my doctor at 2 and we will be discussing lots of information, including the chemical makeup of the fluid that was removed. Depending on the proteins in it, we should know where the fluid came from and that will give a lot of information. There is either a problem with the heart or lungs and that should point us in the right direction. I am nervous but anxious to know. I can deal with anything as long as I know WHAT it is I am dealing with. I saw my cardiologist Monday and he spent 45 minutes discussing things. He feels that the problem is with the lungs (as my heart is pumping like a champ.) Both my heart and lungs are small and I carry around extra weight. It would be easier on them if I didn't but I am told that it is not the cause of the problem and while it might help to lose more weight, it might not. Right now my help is coming from liquid oxygen. It is a major inconvenience, especially when I go out and have to carry a seven pound tank everywhere. It is helping me though. I use it connected to my CPAP machine which I sleep with also. So right now I am on oxygen 24/7. I use less when resting than when excerting and adjust the flow accordingly. It's another world with always being concerned about the plastic tubing, it slows me down. Last night I wanted some grilled asparagas and took it off while putting the veggies on the heat and later removing them. I am adjusting but hoping that I won't need this forever.
I want to feel that I am moving forward and slowly making progress to being more independent again. I am very independent and do not enjoy relying on others to help me grocery shop or do other things that I can't do on my own.
I will never again take something like breathing for granted.

Finally....Results

I finally got the long awaited phone call of the pathology and cytology reports on the fluid that was removed. Although it didn't look "normal" it was fine. No cancer cells in it, no bacteria in it, so it was all good. The doctor wants to see me in a week for further discussion about what is going on.

Today was a difficult day. Although I go to lung rehab on Monday, Wednesday and Friday afternoons (with travel this is a three hour commitment), I had today to do other things. The day began with a visit to the hospital lab to check my coumadin. It was finally high enough to stop the injections of Lovenox, which are painful and have my stomach purple and blue. When I arrived there were no handicapped parking spaces and I had to walk much further than when I can get one. I was gasping for breath (yes I had a portable oxygen tank on) as I arrived at the desk. Kim one of the phlebotomists who I see regularly insisted that I not walk back to my car. She located a wheelchair and was kind enough to wheel me out to the car and made sure I was inside before she walked away. An act of kindness such as that is deeply appreciated. I then had to go to Pearle where I had to take my sunglasses back as they had an issue. It was hell getting into that place from there handicapped spot but the gentleman fixed the glasses and I was relieved that they were finally fixed correctly. From there I took myself to the grocery store. A pretty well located parking spot there. I grabbed a cart which gives me support and helps carry my purse and the oxygen, and picked up things I desperately needed such as milk and bread.
I realized as I stood in the checkout line that a woman was staring at me. While she looked away once in awhile she looked at me as though I had horns coming out of my head. I locked eyes with her at one point and smiled so that she would realize I was not a monster. She quickly looked away. At lung rehab other patients tell me they experience the same thing. I would never have stared at someone wearing an oxygen cannular. I can't help wondering if they think I was a four pack a day person. I want to tell them that I never smoked. Of course, I tried it but never had a smoking habit. I want to tell them that this is the price I seem to be paying for having enjoyed thirty cancer free years. Then I catch myself thinking that it's not really their business and I owe them no explanation. I am still hoping for a diagnosis (other than respiratory failure which the doctor wrote on a work note.) I don't know that she will ever know how much of one problem and how much of another weighs into the problems. I have scars from previous bouts of pneumonia but I have fibrosis from the radiation. I am still hoping that I will not have oxygen for the rest of my life. Right now I am totally dependent on it and cannot return to work without it.

On a completely different note, it's almost Mother's Day. I have a nice basket prepared for my mother. It has a puzzle (she loves having one to work on), a bracelet (Pandora style) with two charms, a book and a mug that says Mom with a matching tea towel. I believe my sister will be here from New York. She is coming an average of twice a month. Her daughter will be getting married in September at a fabulous place at the shore. It will be a beach ceremony followed by a reception. Thank God they are having this in New Jersey because trying to travel with all oxygen would be a nightmare. I would have to have a company send a tank to a hotel and it would be overwhelming at this time. I am trying to help my sister plan a shower here but I am limited in what I can do. They don't want me cooking while wearing oxygen and the minute I remove it, I have real problems. We'll see. Since this is my niece and my Godchild, I want to do something really special for her. She is so adorable, a petite natural blonde that looks wonderful in anything she wears. She also has a flare for fashion and I am so eager to see her gown. Something good to look forward to. I really needed that.

The Waiting Game

This weekend I was in much better shape than I have been. On Saturday I was whipping about with my oxygen line, even going into the garage to search for things I needed. Sunday the pollen was heavy outside and my breathing was not as good. It was disappointing and Monday the breathing was as it was a few months ago. I am frustrated. I am still waiting for the doctor's reports to come back. Supposedly, they will contain information that will help them to know why I made the fluid, and hopefully how I can avoid having it again in the future (although pneumonia can cause it also.) I am trying to be patient, trying to distract myself and trying to accomplish things that I really need to.

I just read the most interesting and wonderful journal entry by Virginia. Click her name if you would like to read it. It made me feel peaceful. She is so knowledgeable about animals and all creatures. I needed that today.

Mission Complete

Yesterday I survived my ordeal. I must say I seemed okay distracting myself by coverage of the royal wedding on television. I loved her gown, which reminded me so much of the elegant one worn by Grace Kelly. Her sister's gown was equally lovely but I wonder why she would have worn white to the wedding. It would have been just as lovely in a soft peach color. But I digress.....I arrived at the hospital early as I had to have my coumadin level checked (I had to stop it on Monday which put me at risk for a blood clot.) The level had been done the day before at my doctor's office and they accepted that test so I was actually a bit early. The set up of this hospital was different. The "short stay" unit of any having a procedure which required an ultrasound or other radiological device, was located in the radiology department. So I was admitted into that unit and immediately the nurse warned me that my lung would probably collapse, at least in part. HUH? My doctor had mentioned this was a possibility but the nurse made it sound quite likely. That's when I became nervous. Rob was not permitted into that unit until my procedure was done and I was returned to that room. One nurse was at lunch and the remaining nurse was simultaneously discharging two patients while admitting me. Shortly after she began, the other nurse came back from lunch and things calmed down. The other nurse took my medical history and I liked her better. She was calming. I waited an hour to be taken in while they were "saving" a patient's central line. They apologized for the wait but I told them to take their time, that was certainly more important than my procedure.

They finally took me into the room and began to ultrsound my lung area. The doctor said he was going to make a mark at the right spot and when I was expecting to feel a pen I suddenly felt a needle and jumped. (I was in a sitting position, bent over a table and holding a pillow.) He told me I needed to calm down. I then explained that as long as he told me what to expect we would be fine. He then gave me the shot to numb me which went really deep. He then inserted the drainage tube and it took about twenty minutes I think for it to all come out. It looked like beer (which I do not drink.) The doctor is sending the fluid for pathology and other tests. He removed about a litre from the area surrounding the right lung and I could feel a weird sensation as the pressure was removed the lung was able to open up. It actually hurt at first to breath using a lung which had not been used in months. I also coughed a lot. They then xrayed to make sure it had not collapsed and the xray was good. I was relieved. At this point I am back on my blood thinners and am using an injectible medicine as well to quickly thin the blood. Now I am waiting to see the results of what was in the fluid, and hopefully they will be able to tell what caused it to be produced. While it can be caused by pneumonia, I made much more after the pneumonia had cleared up. I will be on oxygen for awhile but I am hoping that it won't be permanent. My back and lung area are a bit sore but I'm sure that is to be expected. I'm just relieved that it's over.

Two Choices

Just back from the pulmonologist where I was given two choices:
A. Have part of fluid removed tomorrow and then next week will have other part removed. (too much to remove at once)
B. Have part of fluid removed, be admitted to hospital with chest tube in lung so it can drain the rest of the fluid out. Minimum stay of three days.

I chose option A. The thought of having a chest tube hanging out of the lung did not sit well with me. Yikes. Talk about a source of infection. Apparently there is quite a bit of fluid (I saw the CT scan myself with the doctor showing me.) Most likely at least two litres. My right lung is squished so badly that it can only use 50% of the lung. NO wonder I was gasping for breath. I will need to be on the oxygen for a while yet. She is having a second machine delivered for me which will be hooked up to my CPap as she said I must have oxygen 24/7 right now. My chest actually hurts, from the pressure of the fluid. She promised I will feel so much better tomorrow after I get at least part of the fluid out. Trying to focus on the positive but still a bit nervous. Will keep you updated.

UPDATE

Yesterday I was finally able to speak with my pulmonologist and she had the CT report. There is a lot of fluid surrounding my lungs. (Years ago this was called pleuresy.) It is now called pleural effusion. I have had it since January, with it enlarging and putting pressure on my lungs and preventing them from filling up with air. This Friday I will be admitted for a short stay and hopefully at 1:00 I will have the fluid removed and be much more capable of breathing. I am nervous about the procedure, having seen my grandmother have it done. The needle is very long. I am not a fan of any needles.

I just have to get through the week with not exerting myself and carefully using the oxygen. I pray that a week from now I am breathing and feeling oh so much better. Perhaps the end is in sight.

Changes

Last week I began having some real problems with breathlessness to a new extent. I went for lung rehab on Wednesday and they sent me home. Not only was I having distress trying to breathe (even on oxygen) but they said my color was off and my lung breath sounds were not good. I came home and called my doctor, who was on vacation. Spoke to covering doctor who called the respiratory therapist at the rehab and decided I needed home oxygen (something she had been saying for over a week.) Late Thursday night I took delivery of a huge (R2D2 type) tank with liquid oxygen and a portable unit which can be filled from the larger unit. I had such mixed feelings but I was in no position to refuse it. I still use my other machine for sleeping. On Thursday morning I went for my CT scan. It was originally scheduled for Tuesday but the machine broke. I had the same problem as last time, I simply cannot lay flat on my back and breathe normally. I am gasping for air yet trying to hold my breath for three intervals of a minute each. Talk about torture. The CT scan showed some more problems which I won't go into except to say that the pleural effusion is now larger. This may be causing all the lung distress but you cannot know for sure as other things were observed as well.

At this point, I was given some information about post radiation lung disorders. After doing extensive research it certainly seems a possiblity this is what has been happening to my lungs. I am eager to discuss this with my lung doctor and she is supposed to call me this afternoon and meet with me on Thursday morning. I don't want to speculate at this point and I am not qualified to do so but I am certainly concerned. I was to return to work May 1. I don't see how that would be possible, but that decision is the doctor's not mine. I do know that I would need a lot of arrangements made in order to do that. I work a stressful job where there is no time for breaks other than the scheduled half hour lunch and two fifteen minute breaks.

I haven't been online too much. My son continues to have intestinal issues and I am greatly concerned about him. He was hospitalized eight weeks ago for several days and has been to the ER twice since then. He did come over yesterday and we managed to have an Easter dinner with my husband doing most of the work. My mother and sister also joined us. It didn't feel like a holiday of any kind. Even with the oxygen when I try to do physical things I have problems. I am tethered to lines and have to get to the main tank to change the setting if I am moving about or sitting. I certainly hope that this is going to be for a short time.

Sunny Sunday

Yesterday the weather was damp and cold then we had torrential rain, lightning and thunder. It woke me throughout the night. I have not been feeling well the past few days. I think that a lot of people come to lung rehab when they are still sick. I have become very attentive to using disinfecting wipes on nearly everything I touch there. One woman is particularly dirty. Her clothes desperately need washing, her personal hygiene is terrible and the people who work there are distressed about it. They are helping her but have gently made comments which are ignored. I have never had to be in such close proximity to someone like this before. I am always the one who feels sorry for people. This woman owns her own home and can do laundry. I have to keep a certain distance from her because I start to feel sick from the odor. She worked until last year and I cannot believe that she went to work like this. She is not as breathless as many of us. She moves around easily and can be on the treadmill with no real problem. Last night I began to ache all over. It was so damp that my sternum was aching. Not surprising since it has so much wire in it, but it's not a problem I have had like this before. I couldn't find a position to sleep in that was not painful. Hopefully tonight will be better. If not I will take something for the pain. I miss my father terribly. Easter is coming. He loved holidays and celebrations. I have invited my mother and sister to come here for dinner. I think having dinner there would be harder. I can't believe he has been gone for two months now. My mother is doing okay. Better than I had expected,but still has some really bad days. She has people wanting to visit her, or inviting her but says she only wants to spend time with her family right now. I think she just wants to be with other people feeling the loss. So we are spending more time together than usual and that's been good. IF my CT scan is good on Tuesday, I will probably be going back to work May 1st. We'll see. I won't get the results until ten days later at my doctor's appointment.

Brought to you by the letter U

I really like having a laptop. It's just so much more convenient to be able to use it wherever I choose. With two pets (especially a cat) I find that it gets very dusty and for several days I lost my letter U. Since that letter is in my last name and used frequently it was really a pain to have to hit it several times or go back and add it because it was missing later. I am not supposed to use any cleaners of any kind, particularly inhalants. I had to wait until Rob had time to do this for me. It took about three days. I mean the guy does work full time and then has to do a lot of things around the house I can no longer do. It's frustrating for me to have to wait and ask people for help. I would so much rather be doing things myself. I remember seeing people with oxygen tanks and never thinking of what their lives were like. It's just so inconvenient and frustrating to find myself walking ten feet and feeling a tightness in my chest and realizing I am already out of breath.

We went to Applebees last night. I had hoped to go to Kohl's afterwards but I had rehab yesterday and I was so tired that we had to come home. I did have a great dinner salad. It looks like the sun is finally back. If the temperatures warm up I think my lungs will be better. The dampness and cold have been a real problem.

Is anyone besides me watching American Idol? My neighbor Stacey does and we discuss it the following day. She is always offering to drive me places and help me. I don't take her up on it but just her offering means so much. I am truly blessed with good neighbors here. Time for breakfast. Wishing you a bright and sunshiney day.

Pressing Onward

I think one of the hardest things to do in life is to being working hard, not seeing much in the way of results but still pushing onward towards the goal. In rehab I am not seeing results. They have tried repeatedly to put me on a treadmill and when they do I lose my breath quickly. Mind you, I am wearing oxygen when this is happening. I can't go more than three minutes without struggling and watching my oxygen plummet. I can't tell you how frustrating this feels. All the breathing excercises and other things seem to have no effect on this. Even the pulmonary therapist tells me she is perplexed. She is suggesting I get a second opinion from someone who is prominent in the field. I am having another CT scan next Tuesday and if that doesn't show something then I will try to set that up. She also feels that I need oxygen for home and probably have needed it for months. The doctor asked me but I said no, thinking that I would be okay without it. I also declined her suggestions that I get a scooter for when I need to do any walking. I guess a lot of it is my age, but I cannot accept, at least now, that this will not get better. I just keep thinking they will find the problem and fix it. The eternal optomist. Now for something completely different................ Does anyone else have problems with people calling during their routine dinner time? Mind you, when I am working I am rarely home before 6:30 and people know I am just coming in the door then and rarely call. Now that I have been home a few months, I am finding anywhere from three to ten people call at that time which is 5-6 p.m. I have answered the phone and told them that I am either preparing or eating dinner and will have to call them back. The same people will call again during that time. The obvious solution is not to answer the phone during that hour. When my Dad was sick I was always afraid not to answer the phone because something cold have happened. Now my mother is alone and I worry about her. Also, my son has been sick twice recently. He was back in the emergency room all Saturday night. He got a stomach virus and dehydrated. When he gets sick, his anxiety is bad and he fears that he might be relapsing. I offer for him to come stay here but he knows that my immune system is weak and refuses to subject me to his germs. We do a lot of talking on the phone during that time. Today I am trying to put through a real estate referral. I have to take my sunglasses back to have another prescription put in them. I need to get to the grocery store for a few items. Lots of small things. It is supposed to be raining hard later so I want to get them done early.

Weather Chaos

Yesterday I had to pick up my car which I had detailed. (I have a family member who does that and get a good deal.) My mother came to pick me up and the weather bug told me it was 62 degrees and it was clear outside. Deciding to welcome spring, I threw on a long sleeved T shirt, jeans and wore flip flops since we were going for a mani/pedi before picking up the car. We found a place that does both on Mon., Tues., or Wed. for $30. In this area that is cheap. By the time we arrive at the nail salon it has cooled off significantly and now is a bit windy. While we are in there heavy rain comes in and before we know it the temperature had dropped 20 degrees! We popped into Dunkin Donuts next door for some warm coffee while waiting for the rain to let up a bit. We got to the garage and noone was there. We went to my mother's and I left a cell phone message to please contact me when they returned from lunch. By the time I got out of the car to pick up mine I had to crank the heat up. My feet were freezing and so were my arms. I made it home but the chill had really taken me over and all night I felt cold. My car looks really good. It's a few years old now and I try to keep a good coat of wax on it. There had also been some mold on a door jam and they removed that. Rob and I went out to get a nephew a birthday gift and pick up a few grocery items. From running in and out of places and having been put through a work out the day before, I am really achey. Hoping I can make it through my entire regimen today. Of course, the breathing is the most important part but they want all my muscles worked out. I think I will take Advil half an hour before I get worked out. I think muscles that haven't been used in two years are being excercised. It's a good thing but no pain no gain I guess. Maybe I can lose a few inches in the process.

Time or the Lack Thereof

On mornings such as today there just doesn't seem to be enough time to do all I want. I go to the rehab facility three times a week. While it is about twenty-five miles away most ways I went in the past, I was able to find a zig zag shortcut. I am now getting there in about 35 minutes by shaving off some miles. In order to take the shortcut I have to drive on a highway that is filled with trucks. They cut you off and I am not used to that. I have to be very attentive to the vehicles around me. Still, it is worth the time saved. I leave here about twelve thirty and don't return until about four. At that time I am frantically searching for something for dinner. At five Rob arrives home looking for conversation and something good to eat. You would think that I had plenty of time to get organized before leaving at twelve thirty but what happens is I make coffee, read emails, get a few phone calls, make the bed, and decide what to wear for the day. Since most of my clothes I wear when not working are jeans it's been a problem for me to find clothes I can excercise in. I did find a few things and I only have one pair of shoes that can be used. It's still winter or I would have many other things I could wear. Well, it's Spring pretending to still be winter I think. Today I will stop by my mother's and pick up some peppers and make stuffed peppers for dinner which I will then share with her. She doesn't want to cook but she enjoys a nice dinner so I am trying to see that she has that. My aunt feels I should force her to come here for dinner as opposed to delivering it. I just can't make demands on her at this time. When I see her instead of the mother who frustrated me so much of my life, I see a frail woman struggling to make it alone. I worry now that at 79 I won't have her much longer. If you would have told me in my twenties I would ever feel this way I wouldn't have believed it. When you lose a parent you have spent so much time with it changes many things. I enjoy talking to my siblings now because they understand. Their experience is different than mine but we share a loss. A few friends shared memories of my father with me and that helped to. We all have different experiences losing a parent, just as we all have different relationships with our parents. Still, I find that people who have not lost a parent can be so insensitive. Today is the funeral for the young mother. The funeral is at 11:30 and my Mom was not up to going. I was already scheduled for my rehab and if I don't go I would have to pay for the session out of pocket. I know there will be a lot of people as she was an elementary school teacher. My thoughts are there with her and her family. I cannot imagine her young husband, married two years and left with a week old newborn son. I know her family doesn't live far from them and I'm sure they are only too happy to help. They are a close and loving family. Well, time to answer emails and get start getting ready. I have to keep myself busy right now. Have a good week.

Rehab

I have had three visits to the pulmonary rehab facility. It has been an eye opener in many ways. On the first day they realized that I cannot do any exercise (even walking longer than 4 minutes) without oxygen. If I don't have oxygen, my oxygen level drops below 90 which is not good. It explains a lot of why I have struggled, especially the last year. They call what happens to me "DEsat" meaning your oxygen level has desaturated. I am now working on a machine, doing muscle strengthening exercises and breathing exercises but all while wearing oxygen. Depending on how much my lungs improve, they are thinking I may need to have home oxygen for times when I must ex cert myself. Although I had told my lung doctor about this, it is now documented by machines that measure the activities. I am slowly getting in better shape I think. My muscles had not been used because of the breathlessness. I am hoping to push myself enough to get better use of the lungs. They monitor me and stop me when it's necessary. When you lose your oxygen it makes your heart work a lot harder and your blood pressure rises. This is when I have to stop. My mother had been doing pretty good until yesterday. Yesterday she had to go for a mammogram (if you remember her mother died a year and a half ago from breast cancer.) She was so anxiety ridden then on the way home she passed the cemetery where Dad is, it was raining and dismal and she lost it. She became physically sick. We tried to take her out to dinner but she refused. We brought her home a dinner (crab cakes, potatoes, veggies etc.) but she took a few bites and said she didn't feel well. I offered to spend the night but she refused saying she didn't want me to get sick. She was really upset and I felt horrible leaving her there alone but she insisted. A twenty-nine year old young lady from her church gave birth to her first child a week ago. On Thursday they found the new mother was very ill and rushed her into intensive care after they diagnosed an infection. The mother passed away less than twenty-four hours later. My mother has been friends with her mother for many years and just saw them at my father's funeral. It is such a tragedy. This week old baby boy lost his mother and will never even have memories of her. It has hit us all hard. The funeral will probably be next week, we are still waiting for details and not wanting to bother the family with a phone call. My mother called and asked me if I would go out with her to lunch. I guess she is ready for a change of scenery, perhaps briefly. I am excited that she is willing to leave her house. She hasn't done that much. Life goes on when you lose someone you love...it truly does....but it's never the same.

New Dishwasher

This morning I had a new dishwasher installed. It must sound sad how excited I am over it. My old dishwasher was in the house when we bought it. It only had an on/off switch, it was very noisy and had no boost for water temperatures that were not hot enough. My doctors had asked me if used a dishwasher than sanitized and suggested I get one that did. I try to make use of working things and am reluctant to replace an appliance that still works but when the water was not entering for the rinse I knew it was time. At the time we began to search I found a strong recommendation from Consumer Reports and it was 20% off and then I had a coupon for another 10%. It had all the things I wanted and was highly rated so this last week we ordered it. Now I have to get used to loading and unloading a very different set of racks but I am overjoyed to know that my dishes will be sanitized. Tomorrow I start my lung rehabilitation. I am nervous but excited at an opportunity to improve my breathing. I suspect the pleurasy is still an issue but I won't get another CT scan for a few weeks and that's when they'll know for certain. I found out my insurance covers me for 20 visits only. I am also on my husband's insurance and if I need more visits after that I can use his. Even with insurance it will be costly for us but it is necessary. I am happy for the opportunity after two years of struggling. Yesterday Rob and I had the most delightful brunch. We saw a very small place and stopped when we saw the brunch sign. It was wonderful. They allow you to bring your own wine (no we didn't have wine with us.) I had an individual quiche and salad with their own calamatta olive/artichoke dressing and it was delish. Rob had some scrambled eggs with steak and swiss cheese in them, sourdough toast and some roasted potatoes that he loved. It was reasonable too. Afterwards we stopped at my mother's where my sister was staying for the weekend. The weekend went by fast, they always do. I don't like it when Rob goes to work Mondays. Although I enjoy some occasional solitude, it's different when you aren't feeling well. It's comforting to have someone here. I'll let you know how the lung rehabilitation goes....wish me luck.

Looks Like I am Rehab Bound....no not that kind....

Last Thursday, in addition to my fabulous St. Paddy's Day meal and minor celebration, I paid a visit to my lung doctor. She could hear wheezing in my lung yet and my pulse ox was lower than usual. She decided two things: one, that I was not ready to return to work and picked May 1 as the new day to shoot for and also that I would benefit from Pulmonary Rehab. That is done as an outpatient about three times a week. The difficult will be the traveling to and fro. The drive is an hour each way for me. I will be put on various machines for about an hour and a half each day. A part of me is not looking forward to this but then the other part of me understands that I should not have to continue on with these chronic breathing problems if there is anything that might help me. I am waiting for my insurance company to approve it. (While fighting with them to pay the last bill from the radiology facility I use.) So, I am guardedly hopeful that this may help me and there will be a day in the future where I can shop somewhere there is not a cart for me to push to make it easier to breathe. I am just too young to be doing that and even the "seniors" are making comments to me.
Last Friday my son got sick again. He gets very stressed out over things like the hospital bill he owes for his last stay in February. What a sin that if you have been prudent enough to save that money will keep you from receiving any assistance while had you not done that you would probably owe nothing, but who could take that chance? He is trying to be responsible and pay his own way but finding it frustrating that with all the charity handed out to people who are not citizens (or may have never paid taxes) that he will have to pay for a long time. This country should be taking care of it's own's medical issues before helping others. OK, that's MY opinion but his father and I have worked hard and paid taxes for years (as has he much of the time.)
Yesterday I woke up feeling under the weather myself and realized I have some sort of bug. I've had a headache, aches and pains and some intestinal issues.
Better today and hoping to be A OK tomorrow. That's about all for now.

Irish Soda Bread

Terry asked that I post the receipe for Irish soda bread. I have tried many different recipes and this one came from an actual Irish paper or magazine. It is my favorite and the only one I make now. Mind you, you need buttermilk for it. Also, there is baking powder AND baking soda. The powder gets added to the flour mix but the baking soda gets mixed with the liquids.

4 cups sifted flour (all purpose)
1/4 c sugar
1 tsp salt
1 tsp bakign powder
2 Tbsps caraway seeds
1/4 c butter or margarine
2 C raisins
1 1/3 c buttermilk
1 egg
1 tsp. baking soda
1 egg yolk, beaten

Sift flour, sugar, salt and baking powder into mixing bowl; stire in caraway seeds. Cut in butter until mixture looks like coarse meal; stir in raisins.
Combine buttermilk, 1 egg and baking soda; stir into flour mixture just enough to moisten dry ingredients.
Turn onto floured board and knead lightly until dough is smooth. Shape into a ball and place in a greased 2 quart casserole. With a sharp knife, cut a cross about 4 inches across and 1/2 inches deep in center of dough. Brush with egg yolk.
Bake in a moderate 375 degree oven about one hour or until an inserted cake tester or wooden pick comes out clean.
Cool bread in casserole 10 mins. then remove. Cool on wire rack before cutting. To serve, cut down through loaf to divide it into quarters; thinly slice each quarter. Makes 1 loaf.

I should have taken a picture of mine before cutting it but my mother had just come in, it was warm and I quickly cut it so she could have some. I have several family members who cannot have the caraway seeds so for theirs I leave them out. I make sure the raisins are fresh, if not I soak them for a bit first.

And if any of you are interested in a gluten free recipe found this one:
http://www.mnn.com/food/recipes/blogs/recipe-gluten-free-irish-soda-bread

Cough Chat

Yesterday was a really cold day. It is very rare that I stay in my pajamas all day but I did yesterday. It was depressing and as the day moved along I began to cough again. Last night I woke up coughing and wheezing. That pesky left lung has a middle lobe that loves to wheeze. Last CT scan showed what the doctor believes to be a "mucus plug" in it. I am now coughing a lot and starting to feel nervous. My shortness of breath is worse too. I am either getting a really bad cold (which can lead to pneumonia) or some other respiratory ailment. I have an appointment with the lung doctor on Thursday. I also need another CT scan to see if the pleural effusion has cleared up or at least significantly improved. I have had this several times before and by the time I finished the antibiotics it had cleared. This seems to be more stubborn.

I dropped off my papers for the accountant to do my taxes. With the disability payments and medical deductions I wouldn't even consider trying to do it. The last time I tried I made a mistake and he had to straighten it out for me. I stopped by the grocery store and got a corned beef brisket and cabbage to make for Thursday. I will also bake the Irish soda bread which Rob and I love. We have this traditional meal each year and when I am home to make it, so much the better. I have my doctor's appointment at 9 a.m. so I will be home in plenty of time to make everything.

I went by the cemetery this morning. A few rows over there had been another funeral. My mother is not ready to order the stone although she knows what she wants. She is giving Rob and I the graves next to theirs. We already have a stone there facing the other way so we will have to have "our side" carved with what we want. I want a ribbon like banner and Rob wants Celtic style lettering.
Yes, I know it's premature to be thinking of this but I do want to know it will have what I want. There has been much discussion in my family over who the favorite child is and I told Rob under my name to put "favorite child". That would be hysterical. Of course, he wouldn't really do it. I will have to settle for something else such the nickname my grandmother and uncles called me "princess". Ironically, it wasn't meant to be a compliment but more of a joke, because I was like the princess in the story "The Princess and the Pea". If I got sand on my feet they needed to be rinsed immediately. Since several years of my life were spent on the shore of the Chesapeake Bay you can imagine what a nuisance that was. My grandmother gave me sneakers to wear on my feet both in and out of the water to keep the sand off of my feet. The woman could outsmart any child and we loved her for it. I don't know if I mentioned but my cousin's daughters put together a cook book they had made with pictures and recipes of my grandmother's. What a wonderful Christmas present that was! My grandmother always had blue willow dishes and the book is white with blue art. It's amazing. Everyone I show it to is so impressed at the job that Christie and Jenny did. My aunt had one made for my mother, sister and I in hardcover and some smaller softcover ones made for my brother's wives. I am thinking of making one about my Dad for my mother and siblings for Christmas. We have so many pictures of him. I would need to type up some stories. I have plenty.
Well, time to grab some lunch and run something over to my Mom's. I try to see her for a time each day. There is so much still to do but yesterday Dad's clothes were given away (except of course for his shoes.)

Monday Musings

I had a really nice weekend (except for the sleepless night on Saturday.) My sister came early Saturday morning. She had a few hours with my mother (I always try to allow them sometime without me there) then they called me asking me to go out with them. We went to the Dollar Store and got our bargains. I got a lot of cards there. Afterwards we retried what had once been our favorite diner. In the New York area diners are a bit different than elsewhere. You can get some fabulous dinners. In New York state some diners even serve liquor. This diner had changed hands a few times and the last time I was there it left a lot to be desired. They had remodeled and we had a very nice dinner. I had crab cakes which were all crab, almost no filler and my sister had the sole stuffed with crab meat. Our portions were large and there was no room for the included dessert so we got rice pudding to go. We went back to my mother's and worked with her on a jigsaw puzzle. She always enjoyed them and now has several new ones. For the most part she is doing well, although she has some bad moments. I was spending every waking moment there but slowly am trying to get her used to having some time on her own as I am slated to return to work April 1st. That will be hard for her. We have done a lot and today she was dropping off the last of Dad's clothes to be donated to a bowery mission in New York. Seeing the clothes in the bags was really hard for me. I know they will be put to good use. He had visited the mission with his minister once or twice. Every now and then I almost pinch myself and ask "Can he really be gone?" It puzzles me how I can do that after attending his funeral and visiting his grave half a dozen times already. I guess it's all part of the grieving process. When I was out of work five years ago my Dad would just show up at my door. It was usually around lunch time and he would ask "What's for lunch?" At times I was busy doing other things and I would kind of sigh. Now I would give anything to have him throw open my front door and have lunch with me again. The last two years there was a rare time you could have a give and take converstation. He had aphasia then just gave up talking except for simple words like yes and no. If he got irritated he would let you know with shocking entire phrases or sentences like "Leave me alone" or "Go away". If you were lucky you got a smile from time to time and that made my day. We lost him slowly over time and then at the end, it was like we lost him twice.

My sister brought Office 2007 for students with her. I have been wanting it for a long time. Now I finally have a word program in the laptop. I also was able to convert my old word files. I have an excel spreadsheet with names and addresses that I used for Christmas cards. I have to try to figure out how to do that in this version. It gives me something to do. I had also done two journals (favorite poetry and favorite receipes) that are in a Corel program. Can't seem to get them open now. I would like to have them put into word.

It's chilly today. Overcast but no rain predicted. I am going to stay home today. Just take some time and watch an old movie. No doubt my neighbor Stacey will come over at some point. She has been wonderful with her caring and support.
They wanted to take us to a concert but we declined. I don't want to leave my mother for hours yet. It's a lot what she has and continues to go through. It has changed her and made her more emotional in a positive way. Life goes on but I think these experiences change us all. Now when I know someone has lost a parent I will reach out to them and let them know that I understand.

Life Goes On

I have spent so much time thinking about friendship and making many observations. I have found that the friends who tell that they love you, promise to be there for you always etc. are the ones who let you down. My other friends who never made promises were the ones who were here for me. In fact, one cried when hearing a phone message from someone who always said they were my best friend. I have discovered that these people when presented with the truth try to turn it around and blame me. I tried to hang on to friends I had a history with but the truth is time passes and people change. I don't make promises to friends but when they need me I do my best to be there. Is expecting to be treated the way you treat others too much to ask? I don't think so.

My Mom has had a few really bad days. I have had to go there and give her sick dog medicine that she can't get her to take. I wrote some thank you cards today for her and made lists for her. Every single thing is a reminder of a person who is no longer there. She has also had two close friends who have not called or visited and I know that is bothering her as they were both widowed in the past few years. They came to her house all the time then and she was there for them.
I remember one friend who just came sat and cried.

My one friend talked to me yesterday and told me that she cannot allow people to get too close to her anymore. She was hurt too badly and just couldn't put herself out there again. A part of me feels that way. The other part knows that there are genuine people out there, some who have touched me in a way I won't forget. I do know this has taught me that I will never underestimate the power of a sympathy card. Each one I received was cherished. It's not a hard thing to do but it means so much to someone when they are grieving.

Lent started this week. For lent I am giving up friends who profess to love me but whose actions say something entire differently. No relationship is 100% bad and of course I got some good from them but I need much healthier relationships.

The Good and the Bad

My cousin and her Mom were here for two glorious days. It was wonderful to have their company. They spoiled us by taking us out for every meal. The whole time we have had company this was the first time there was no food prep or dirty dishes, save the lunch I made them when they arrived. Because they have been through this, they understood and shared a lot. Sometimes just being understood is worth it's weight in gold. I stayed at my mother's, with my cousin, so I had two days without animals to worry about. When I arrived home I was shocked to hear a phone message that had been left. A friend was angry that I had not called her back in the past two weeks. (I had called her the day my Dad died and that was exactly two weeks earlier.) Truth be told, I had attempted to call her and if she had checked her caller id she would have seen that. I did not leave messages. She only has a cell phone, no house phone and reaching her is not always easy. She went on to say not to bother sending her cards (I had sent her a St. Patrick's Day card) as we "never talk." I cannot tell you how upsetting this was. Firstly, my father had died two weeks to the day yesterday. In that short time I have spent countless hours calling social, security, their utilities, etc. to have things changed into her name. Some require copies of the death certificate. People are constantly dropping by my mother's house, bringing productivity to a standstill. My mother is not fully functioning right now. I prepped her house for company, changed bed linens and fielded what phone calls I could. Should I have to explain this to someone? I think not. While all this has gone on, I have also continued to deal with my health issues and see doctors and make sure meds are filled and taken. Anything I do at my mother's is with me struggling for breath. My mother's house has been a constant delivery point. My brothers friends have sent floral, and fruit arrangements and the food deliveries still continue. I am astonished at how much support their friends and their families have given and how generous they have been. Some of my brother's friends have actually called me to see how I was doing. My neighbor, Stacey, was at the funeral and has called and or visited me each day since then. If I am not around, she leaves a message just to let me know I am in her thoughts. Yesterday when she called I was crying about the phone message and she cried with me. The friends you think will be there for you sometimes cannot be. Maybe they choose not to be. I have learned once again that I can only truly count on myself. I'm a strong person who has survived cancer several times, heart surgery and five bouts of pneumonia in twenty months. I will survive this too. It would just be easier with some genuine caring and support.

New Post

Friends:
I wrote a lengthy post in my confidential journal (private version) which I meant to put in here. I cannot cut and paste it or move it over. IF you do not have the link or wish to have your email address added so that you can access it, let me know. I think most of you are on that list anyway.
Sorry for the inconvenience.

My Father's Passing

On Feb. 22nd my father entered eternal rest. It was a gentle passing and my hopes and prayers were answered as it was in his sleep and as my mother slept nearby and never heard anything we know it was not traumatic. She awoke at 4 a.m. and he was already gone. She called the hospice nurse to come and then my brother and I went there and and saw him before the funeral home came.

Later we went and made the arrangements and on Thursday, Feb. 24th it was just one service: an hour viewing followed by a funeral service. He looked so wonderful. His coloring was perfect and he was buried with a gold and diamond tietack I had bought him. It was his and I insisted. We left the funeral in a short procession to the cemetery. The state police escorted us (my nephew is a state trooper and his friends volunteered their off duty time.) When we arrived there were two Navy officers. I am posted a picture or of that. They played Taps and presented Mom with his casket flag. Rob took out his phone and snapped a few pictures which turned out beautifully (at Mom's request.)

My mother is doing better than any of us expected. I have been spending most of my time at her house helping. Her sister and niece stayed there all last week and then my sister came from upstate NY and later my brother and his wife. It was chaotic with us five kids and spouses but it all worked out. We were the recipients of constant food and floral deliveries and there was an abundance like I have never seen. Mom had a catered luncheon back at the church after the cemetery and we had those leftovers too! At least a dozen people bought food and some paid a restaurant to deliver cooked food.

I must say this: I am so saddened by the lack of acknowledgement of my coworkers that I have worked with for 3 1/2 years. I cannot focus on that but it has made me realize at a time such as this how just a simple email saying I care or a card means so very much.

I have letters to write and much to do but I wanted to post this and let you all know. I will be out of work until April 1st now. I still have plural effusion (fluid surrounding my lungs) and it causes me difficulty in breathing. I have been running a low grade temp as well. Hoping that will clear up.

OH! The day of my Dad's funeral my son who had been ill for several days went to the ER and collapsed. They admitted him and he was inpatient for three days. He had a bad stomach virus and had to be in isolation. He came home Saturday. He has his own apartment, he doesn't live with me and I couldn't be around him. Rob did go take him magazines and visit with him.

My phone is starting to ring a lot....I have lots to do. Life goes on and I am taking it one day at a time.

UPDATE on previous post

Have been taking my medicine at the much higher dose and with another medicine added to it and I am breathing oh so much better :)
IT is absolutely wonderful to be able to walk to another room without stopping to catch my breath on the way. I cannot put into words the relief I feel.

Weather reversed itself from 70 to about 30 and very windy but still sunny.

I am going to be making a cake (from scratch) that my sister-in-law, Leslie, made. It was scrumptious. It was called harvest cake but she and now I refer to it as apple cake. It has fresh apples and nuts and a light carmel glaze. My kind of cake. I get to use my new mixer. Leslie got a red one for Valentine's Day and named her Ruby. She called last night and asked me what I had named mine. Ummm nothing. She said well then she will be Olive. Yes she is green although more of an apple than an olive but she was so enthusiastic about naming her that I will keep Olive l0l.

I am joyous for the first time in weeks. I can breathe. Something most of us take for granted everyday but when you can't do it, trust me, it's major. Have a wonderful weekend. Spring is around the corner.

So much going on............

Yesterday was a crazy day. It started with me getting a CT scan of my chest to see how the pneumonia was clearing up. When they went to lay me down I was gasping for breath and the technician got upset. I assured here this has been happening for a week and she proceeded after agreeing that I could not elevate my legs on the wedge. When it was done a doctor came in the room looking very serious and began to ask a lot of questions about my heart surgery. I could tell something was wrong but I wasn't really eager to hear about it so I got my DVD copy for the doctor and left. I then went to the eyeglass place to have my new lenses cut for my existing frames. I have to tell you that I have terrible vision and now need progressives. I went to THREE places to price just the lenses and each place sold the same manufacturer and the price was consistently $550.00 just for the lenses! I had to have them. While they were putting the new lenses in I drove and got myself a diet soda. The weather was beautiful and I tried to soak it in. I returned, picked up the glasses and headed home. There was no phone message from the doctor so I was thinking maybe I misread the doctor (which I rarely do.) The mailman delivered my new laptop battery which I had waited weeks for. We had some leftovers for dinner and then I heard the cell phone ring but couldn't get to it before the house phone began ringing and my lung doctor was calling. It seems I have fluid and plenty of it: in and around my lungs. She said I had to up my lasix, doubling it and take potassium with it. I also needed to call the cardiologist and make him aware of this.

I had to run to the hospital this morning for a blood test. Did that and made it home before 9 a.m. when all the phone calls began. I need dr. a to fax this to dr. b etc. They all need copies of things that each has done. I need to see all of them next week.

I don't know where I am....what is the real problem: heart or lungs or perhaps both to some degree. It's scary but I've been dealing with it for nearly two years now. I want answers but they seem so slow in coming. These are not the first doctors who have tried to solve this. Half a dozen of each specialty have seen me. I am following their orders and taking it easy. I really have no choice.

I am trying to keep my mind in a peaceful place and assuring myself that this will get resolved and life will go on. I just want to be able to walk without struggling for breath. Patience grasshopper.

Happy Valentines Day

This is my Valentine. He has not had it easy of late because I have been rather cranky. He has taken over much of my duties here and at times it makes me feel guilty and frustrated. I am very particular about how things (such as laundry) get done. It's very frustrating to me when I see my new black T shirt covered with white lint or some of my clothes have been shrunk. At times I just cry and I know it sounds silly but I don't want anyone doing anything for me. I want to do it all myself. I always took pride in being so independent. Now at night when I have some episodes where I am struggling for breath I feel I am not the same person. Ronni commented that "This too shall pass." I know this is true. It's just finding the patience until it does that I need.

This morning I went for an overdue mammogram and bone density scan. I already know that the area above my navel has thin bones due to radiation. The others seem okay as far as I know. When I was giving my medical history to the technician she looked shocked. When I had to lay down flat for the test it made breathing so difficult she wondered if I could do the test but I did. It didn't take that long and I wanted it done. The walk through the maze of the radiology facility left me tired and breathless but I did it. It was a sunny 55 too which made it so much nicer. I know that I am making slow progress. The breathlessness is something that will never totally be gone as it is due to more than one factor. I have to do the best I can. I have lost weight since my wedding nearly nine years ago. I hope to still lose more if that will help.

One day at at time. That's how I have to do it for now. I have much to be grateful for and I have not lost sight of that. I have survived cancer for thirty years. I deal with the problems now of radiation that they no longer give so much of. Would I do it again knowing all the problems I would deal with now?

ABSOLUTELY. When I feel my lowest I sometimes forget my goal to enjoy each day. It's hard when you feel poorly but I need to focus on the better days ahead and surely, they will come. When I see my first flowers bloom I know that my spirit and zest for life will be replenished.

A Day Out

Today I went on my rescheduled eye appointment. It was originally to have been when I was in the hospital a few weeks ago. I needed a visual field test, pictures of my optic nerves and the thorough exam. I arrived at 2;30 and wasn't taken in until three. They were having problems with the machine that takes the pictures of the eyes. I did the visual field first and then they took the pictures which took forever to print out. I then waited about another twenty minutes before I saw my eye doctor. I believe I actually whined to him about being so very tired and explaining this was my first trip out on my own and that the handicapped parking was not available and I had to walk a long way into the building. This is not like me. He has treated me for years and said that he was a little concerned and offered to walk me out. I did order new lenses for my frames that I have. My eyes are so bad and I wear progressives. The lenses will be $600.00. I had priced them three places and all were the same. The cheaper places like Lens Crafters will not make my lenses. It will take about two weeks to get them. My reading prescription had changed a lot causing me problems when I tried to read.

I had made a list this morning of what I was going to do. As I climbed back into the car I decided that I had to scrap that plan. I just couldn't push myself. I was exhausted and needed to curl up somewhere. The fatigue is still with me and I need several naps a day. The coughing has improved somewhat. I still wake up every night several times. I am either sweating, having bad dreams or need more water. We are expecting some rain/snow tonight. I have to call my internist in the morning and see if she can squeeze me in. I found lumps in my stomach. I believe they are from the injections of Lovenox I gave myself but I need to make sure. They are painful and if I roll on them while trying to sleep, they are waking me up.

I keep giving myself pep talks. Sometimes they help and at other times I wind up making myself angry. I just want to be better. I guess I am better, I want to have enough stamina to do something and enjoy myself. I did bundle our tv, internet and phone. We went with FIOS and now have tons of free channels for the next three months. Every couch potato's dream: constant programming.

The doctors agree that I am getting repeat bouts of pneumonia because of not having my spleen. My immune system is weakened by that and age will also factor into that. There is no fix. All I can do is be careful to avoid sick people which is nearly impossible. The key is to get EARLY medical attention once it is clearly becoming pneumonia. Most likely I will need weeks of IV antibiotics each time. Oral medication doesn't seem to work any longer. When I am feeling better I am going to try to research and see if there is anyway I can try to improve my immune system. I do eat lots of foods which contain vitamins and natural chemicals but perhaps there are more.

Looks like my ativan is kicking in and I will be going back to sleep now. Sweet dreams.

Sleeping Sickness?

For the first ten days home from the hospital I was unable to sleep more than two hours at a time. Coughing kept waking me up and laying down seemed nearly impossible. For the past three days I have slept about eighteen hours each day. I did wake up this morning at four with a coughing attack that actually got my chest aching. You can still here congestion in my lungs and I cough up so much stuff on an hourly basis. I must be continueing to make it. Lat night I also woke up drenched from head to toe, even the sheets. This concerns me as it kept happening when I had the infected heart valve. I see the pulmonologist on Thursday. She has me scheduled to return to work March 7th. Right now that feels so close. Of course, if necessary, that date can be pushed back. I find that each bout of this illness leaves me weaker and the recovery slower and more difficult. I have learned that I have small lungs, that they no longer yield a normal x ray even when I am doing well. When I was in the hospital I was in "serious" condition. I wish there were a magic pill I could take to guarantee I not have to go through this again. Not being able to breathe is miserable. Coughing until you gag is miserable.
I feel isolated here but I am not up to going anywhere or visiting people. Tonight a neighbor showed up with a few bags of fresh produce and fruit and cheese. I so appreciated that gesture of thoughtfulness.
Today is my sister's birthday. Thursday is Rob's. I sent my sister a card and check last week. I am trying to think of something for Rob. My brain seems disconnected. I know, this too shall pass.

Home Again but still sick

I was released from the hospital on the 20th I believe. I begged my pulmomologist to let me leave, and she did, without full support from the ID doctor. I have paid for that and in hindsight, I should have stayed a few more days. Rob is wonderful but he has taken off so much time already to help me and I insist he go to work. I have visiting nurses but they see many patients each day and don't spend a lot of time, although I am encouraged to call them with any questions or if I want them to come at any time. This is old school for me. Thing is, the other two times I came home with a PIC line I just had to give myself two ivs of vanco twelve hours a part and one shot a day of Lovenox. (This is a blood thinner that is injected into belly fat. For some reason at times it is very painful and minutes later feels like the sting of a wasp.) My stomach looks like I took quite a beating. Still, as of Friday my blood was not thin enough which poses a danger to the heart valve, so I continue getting two painful shots a day. The ivs are two that are twelve hours a part but the other must be given four times a day, every six hours. This is a new antibiotic they have me on. The antibiotics that worked in the past failed this time. What I did have going for me was that I went to the doctor early on Monday and was on oral antibiotics until Thursday when they sent me to the ER to be admitted. At that time my fever was steadily going up. The chest x ray showed a very minor pneumonia in one lung but the CT scan showed it was in both lungs as well as a lot of fluid.
On my home regimen I am also received three breathing treatments each day. To be honest, they reduce the wheeze but I still cough, a lot.

One thing I value is that I am always open and honest. I am very discouraged right now. Firstly, this is my fifth bout of pneumonia in just under 18 months. FIFTH! This was my fourth hospitalization. This time I had fluid around the heart which I have not had before. It takes me longer to recover and it's hard to motivate myself right now. My lung doctor is wonderful. She understands and spent extra time talking to me, trying to encourage me. She shares my concerns though. One night she had them bring me a small bottle of wine with my dinner as a reward for fighting so hard. I consider her and Rob my support team. In this world good, dedicated and caring doctors are not easily found. I let her know constantly how much I appreciate her.

I am still waiting for forms from my company that were being overnighted to me on Thursday. Until then, I cannot file my short term disability papers and that means at least a month until I get a check once they are filed. Thank goodness we have an emergency account we can hit. Since it was the new year insurance wise, I had to pay several hundred up front for meds and such.
Well, I had only a few hours sleep last night. I couldn't sleep laying down and I sat up in a chair for the sleep I got. Sometimes I wish I had a hospital bed here so I could raise the head when having breathing issues. I never gave it a thought until I had the lung issues how difficult it makes your life. Walking short distances leaves me gasping or coughing. It is my fervent hope and prayer that my lungs will improve. I just hope I can be patient enough until that happens.

Nelle Update

Hello all, Rob here.
Nelle was admitted to Robert Wood Hospital on Thursday with Bilateral Pneumonia, and fluid in both lungs. Also some fluid around her heart. She has been receiving IV antibiotics and some breathing treatments.
Her Pulmonologist is happy with her progress and she may be sent home soon with a PICline so she can receive IV Anti-biotics at home.
She has no computer in her room but can receive emails on her Blackberry via her NelleMcLaughlin@gmail.com addy.

Saturday Snow and Sunday Sunshine

Yesterday I had so much to do. Jumped out of bed bright and early and we began taking down the Christmas tree. When we finished with that we made a trip to the mall where we picked up a few gifts and had lunch. My childhood best friend's daughter just had a baby herself. It seems like not so long ago I got the call from her mother's delivery room telling me she just gave birth to a baby girl. She had a son and was so thrilled to be having a daughter. Her daughter had the most beautiful pictures taken and a video done. What a treasure that will be for years to come. Yesterday I was able to purchase some really cute clothing for her baby and it was fun. The snow began really falling and sticking and we cut our shopping short and came home. We continued putting away so many little decorations. Each year I receive more as gifts and at times I find it overwhelming what to keep and what to get rid of. I have many ornaments from friends and family members over the years that each inspire a memory. My favorites are the ones my grandmother made for me. They contain a silver coin from our birth year and she pained our names on the plastic cases. It was so hard not to have her this year. I still miss her terribly and feel the void left by her passing. Ironically, in my garage, I found the tiny pinafore apron she had made for me which matched hers. It had Santa coming out of the chimney.

I have struggled with my breathing this week. Most mornings I am coughing up blood when I initially wake up. I have an appointment to see my regular lung doctor on Thursday. I saw her associate ten days ago and the antibiotics he gave me did nothing. I am still coughing and feeling tired. I have also learned that the heart infection I had in my vitral valve last year has damaged it, causing a thickening which is causing valve regurgitation. I see the cardiologist later in the month and we will discuss this further. Apparently the problem with the heart not pumping well is causing the lungs to remain wet and vulnerable to illness. It's like a puzzle, with so many people trying to assemble the pieces and see the overall picture.

Well, I need to go grocery shopping. I am thinking a bit pot of chicken soup might be in order. It's really cold out the but sun is shining brightly. My New Years Resolution is to try to see the good, even on the cloudy days.

Christmas and a Thirty Inch SnowStorm

By Christmas Eve I was really under the weather. I had off work that day but I just laid around most of the day. Also we discovered that our leaking faucet was now not only leaking along the top and spilling onto countertops but the hot water was leaking below. We called a neighbor over who had been a plumbing apprentice so we thought he could show Rob what to do. We had the new faucet it was just getting it installed. Pic of new faucet on left. He was not able to do it saying we needed a special tool but he did try to rem

ove something making the water leak below much worse. We had to cut the water off. We went to bed early then woke up wondering I would be making Christmas dinner. My mother had my sister there making a turkey but I was not up to going there. My mother's house is way up on a hill and on my best days climbing all those stairs wears me out. So I put the ham in the oven and hoped for the best. Called my sister and her friend was coming there for dinner and I knew he did a lot of his and her home repairs so I asked if he or my Dad might have the tool. She said they would eat and be here around 2 and yes, Dad had that tool in the basement. We waited and waited and when they were not here by 5 I called another neighbor who was a plumber before he became physically disabled. I explained we didn't want him to do anything but lend the tool. A short time later he and his wife showed up with the tool and Rob began the process. It went rather well all things considering. Once he was in the thick of it my sister and David showed up (of course.) The faucet is wonderful with a sprayer that pulls out OR you can just push something in and it's like a shower in your sink. It was a good choice for us. By the time our neighbors left, hours later I was exhausted. My sister then left and I felt sure it was midnight but it was only eight p.m.! We had only had some ham for dinner (no sides).We had a slice of cake and went to bed shortly.

My Christmas was different but honestly it was one of my better ones. Rob surprised me with a Kitchen Aid Artisan and since I love to bake I was thrilled. Had wanted one for years but couldn't commit to a color! He chose my favorite and it looks great.

The day after Christmas we got hammered without about thirty inches of snow. Both of our companies closed so that was good we had an extra day off. Our biggest problem was making a place for Duffy to go to the bathroom. Rob created a zig zag of sorts. The next day our roads were really bad and so was my cough. I decided not to attempt work which was all back roads. A family member with a 4X4 took me to the lung doctors. They tested me on a machine and told me that I was wheezing again which is usually a bad sign. I have bronchitis and they want to make sure it doesn't become a pneumonia. He gave me the pneumonia antibiotics and an inhaler and sent me on my way. If the wheezing doesn't stop I am to call him and he will give me steroids too. It is already somewhat better.

I took off this morning to go to the dentist using vacation time but I was not up to it and it's a long trip there on roads which still need more plowing. I am going to work half a day (1:30-5:30) today and a full day tomorrow. Then my Friday, Saturday and Sunday off. Yes! Time to use that mixer. Since it's green my friend, Simone has dubbed it the McMixer lol.Green is such a relaxing color but I am surprised at how many people do not like it. Several of my friends love orange which is not a color I like. To each his own.

Well, I want to wish all of you a Happy, Healthy and Prosperous New Year!

In 2009 I had pneumonia three times and had two lengthy hospitalizations. In 2010 I had it one time and a two week hospitalization. My goal for 2011 is NO pneumonia and NO hospitalizations. I am making progress each year. :)

Have a wonderful weekend.

Friday Update

Today my former boss came in to see a few people and get her mind off her troubles. Her hand is bandaged. She was telling me she left the housefire with only the clothes on her back. Someone had given her jeans, a blouse and a winter coat so she had something to wear. It was good to be able to give her a big hug. Afterwards I left a bit early and went to Target. I was able to pick up a few items on sale for her: a bathrobe, pair of pjs, shawl type scarf (she had them in all colors) and a giftcard for some makeup. We are having a pot luck celebration on Monday and giving our secret santa gifts then so it will be nice to have a gift for her. Some of those participating in the Secret Santa asked for gift cards to give her. I requested an ITunes card knowing she was given an IPhone by the company which was lost, along with her laptop, in the fire. She can at least download music into her phone.

This Christmas has been better for me than last year's. My biggest problem though is parking and walking into stores. Unless I can park VERY close I am unable to shop there. I try to go into stores which have carts I can lean on. This helps so much with my walking. It also makes it so much better when I don't have to carry items. This includes my heavy pocketbook. Although I keep trying to lighten it, there are so many things I feel I must have with me (a diabetic tester, strips and lancets, various medicines, an inhaler, a wallet, a two inch thick packet of cards with doctor information etc., hand santizer and individually packaged wipes.) These are things I just don't feel comfortable leaving at home. I have tried putting all the information possible into my new phone, including doctor appts on the phone calendar. This is helpful but I just can't seem to do without the other items.

I have not had my teeth cleaned since June of 2009. The reason is that during that cleaning I became sick with the heart valve infection which it took about 8 months to discover. I am nervous about doing it, but I must. I have had my teeth polished at the dentist but I am talking about the gum cleaning. I will be on antibiotics for it, stronger than I previously took. My appointment is Dec. 29. I know I have to do it sometime and I have procrastinated enough. Time to just do it.

It has been bitter cold here, 21 during the day and it was 0 at night. They are talking about a Noreaster Sunday. We shall see. Have a good weekend. I only have a few minor things left to get. It's almost here.

Sad News

Today we got some sad news at work. My former boss who was such a sweetheart had a fire in her apt. over the weekend. She lost her beloved cat and I understand she got injured trying to save the cat. She has nothing but the clothes she walked out the door in. It's so heartbreaking because she was one of the few people I ever worked with who reached into her own wallet when she knew someone needed lunch. She offered to give me her personal vacation time to use as sick days if I needed them. Our company sent her out a new laptop and cell phone today so we can be in touch with her. My heart really goes out to her, especially this time of year.

It is bitter cold in New Jersey. Twenty one degrees right now and going down to 0 tonight. Whew! Thank God I have my Smokey as a foot warmer. lol

We are going to be taking up a collection for our old boss. It's hard this time of year to find extra but we will all manage. This Christmas has been about giving to others for me and I have enjoyed it so much more than other Christmas seasons. Have tons to do but wanted to make a quite post. Say a little prayer for my friend as her heart aches for her fur baby.

Life Goes On

My life has felt so hectic. Thanksgiving I made a 20 pound turkey. My father's hospice nurse didn't show until hours later so my mother and sister decided just to eat there with their small bird. It was just Rob and I. Later I took them some of our turkey too. It was great to have four days off work but honestly I had so much to do that they flew by. I was able to get some car work taken care of, wrap some Christmas gifts and get the cards written and sent. I also have slowly used the Cpap but only once for the entire night.

Many changes at work. For two years I had the same boss. I just got my FOURTH boss in less than a year yesterday. It's so hard to get used to each one and then they get promoted and move on. I am glad for them but it's hard on us. I will be moving back to my old team (along with half of my current team) and these people are just so thoughtful and loving I am excited for the change.

I am fighting depression this season. I lost my grandmother before Christmas last year but I was so ill I just wasn't really dealing with it and grieving. This year it has hit me like a ton of bricks. I cry daily, sometimes several times throughout the day thinking of her. I know this will pass but it's difficult now.
My aunt said she feels the same way but that we have to think that she is where she wants to be and her suffering has ended. There are things worse than physical suffering.

Well, time to get some bills paid. Hope you are all in full swing for the holiday season. Happy Hanukkah to those celebrating.

Serenity Found Me Today

Today was a relaxed day. I had a nice glass of wine as I loaded some music into my laptop which is now a year old. I got a blackberry last weekend and I am trying to get some music together to load into that. It was so odd, my grandmother's estate was finally settled. I didn't get a lot of money but for the past year extra money has been rare so we splurged. We each got the blackberry torch (a great deal I might add) and I finally have internet on my phone. I also got two pairs of boots which were badly needed.

Yesterday a respiratory therapist came and delivered my Cpap machine. They name is discomfort. This is what the mask looks like and it is fastened to your head with two separate elastic bands. The top one dug into my head but if it is too loose then there is no seal and the air leaks out. Grrrr. I only made it an hour and a half last night. Going to try to do better tonight. She said it would take time. Perhaps in a year or so...lol.

I am still in my pajamas. My ex went bonkers if I didn't get dressed early in the morning. When I didn't feel well it was really difficult. I am so glad that my life has changed in so many ways. I have freedom to do what I want. Rob never tries to boss me around. He accepts that I am his equal and that I am perfectly capable of making whatever decisions I might need to. Even when I make decisions that he is unsure of, he supports me.

I have had to make some decisions lately that have been difficult and lead to some family upsets. Due to my health I will not be going to my parents for Thanksgiving. My Mom refuses to use her dishwasher and she is getting very bad about washing her dishes. It's a chance I just cannot take. I have tried taking over plastic things and it just doesn't work. My mother understood but my sister was upset, feeling I wasn't making enough of an effort. Well, last year I missed a total of 7 months of work due to illness. I no longer have FMLA and if I go out sick again I can be let go. Sorry, these are chances I cannot take. If I get sick taking precautions, then so be it but I won't put myself in harms way.

Never having been sick a day in her life, she cannot understand what I am going through. I get that but I told her she needs to stop expecting things of me that I cannot give. I am willing to send dinner over to them but not cart an entire meal. My mother has about a dozen steps to get to her front door. I gasp for air and that's without carrying anything! I am on one new med that has helped, at least some of the time. In two weeks the cardiologist will consider changing another med I have been on, thinking it is now part of the problem. We shall see.

Christmas is coming. I refuse to stress myself. From here on out it's about enjoying the moments. I am going to work each day and my down time will be spent doing what I need to do for me first. After that I will be happy to help friends and family, providing it doesn't have a negative effect on my health.

I feel like I am in a good place.

Have a great Thanksgiving. We all have so much to be thankful for: a roof over our heads, food on our tables, love of family and/or friends, and I am grateful for technology which lets me communicate with you. I am so very grateful to Rob, always there, never complaining and just loving me. It doesn't get better than that. My prince came. He wasn't tall or rich but he was honest and kind and loving. I can't imagine how I would have made it through the last five or so years without him. I think I'll keep him. :)

An Update

For several months after I expected to see improvement in my breathing, I have struggled constantly if I was moving. A few weeks ago I went to them all to pick up some gifts and barely made it to two stores. By this time I was unable to make it back to the parking lot and my car. A visit to the lung doctor told me it was not a lung issue. In fact, she said my lungs sounded good and the oxygen function had improved from the previous visit. She suggested I see my cardiologist. (For those of you who might not have been reading my blog at the time, six years ago I had heart surgery to replace my aortic valve with a mechanical one.) Since then other than an occasional bout of tachycardia I have been fine. Okay, there was the one episode of endocarditis but it was a different valve and antibiotics cleared that right up. My point is that my heart was functioning well.

On Monday night I saw my cardiologist and he was very upset after seeing me that I had not come sooner. I had cancelled on him, he had to reschedule me and my visit to him was two months later than he had requested. He said my heart had not pumped the fluid out of my body and he suspected I had a minimum of twenty pounds of fluid and that is why I was breathless and tired. I had this problem in the hospital immediately after the surgery but not since then. In the hospital I had over thirty pounds of fluid but laying in a bed wasn't experiencing any problems from it. Your heart is a pump and when it doesn't do the job as it should, that is congestive heart failure. It's not something that you die from quickly but over time it weakens. They are going to be watching me carefully now. I was put on lasix, a drug to remove the fluid and in twenty-four hours about twenty pounds of fluid came off. I can walk AND breathe at the same time. It feels so good.

I have never been one to take life for granted. Since my original diagnosis at age 23 I have known that life is fragile. Waking up each morning is a gift for me. I was shaken up at what the doctor said but I have survived so much and there is a lot of spunk left. I am not going to make any changes for now. I will be taking the prescribed lasix for certain. They are also going to try another medicine and get me off my current blood pressure medicine which may make this problem worse. I am glad to know what the problem is and that there are things we can do to make it better. I expect to be feeling so much better and that brings me great relief.

If you have your health, don't take it for granted. It is something so precious and no amount of money can buy it. Life is good. Enjoy it. :)

Chugging On

I am so tired. I wake up tired...drag through the day and crawl exhausted into bed. This is not how I planned to live my life. There are many reasons I am like this. A sleep study showed that I do have sleep apnea but they told me it would be about two weeks before I would hear from the doctor and I am still waiting.
I am coughing again...and wheezing. The breathlessness is so bad at times that I cry out of sheer frustration. Other days it is not so bad and that makes me crazy wondering WHY? Tomorrow I go to the cardiologist and I feel that is a big waste of time. He never does anything that helps. The only reason I still go is that he monitors my coumadin and I have to have someone who does that.
I am sick of thinking about/dealing with health issues.

I have been at my present employer for three years. I was told I would increase my hours off each month. Have not seen the increase yet and I am eagerly waiting for it. For the past three years I have only had 10 hours off each month. That is for ALL days off; sickness, emergencies, vacation etc. I have never had one day off during that time for vacation. It has all been used for illness. Right now I have one day left which I am planning to use for the day after Thanksgiving. IF I get sick before that day then I will have to work that day.
All my family and friends have off and it is torture to work that day. I am so hoping to have it off. By the way if I call out sick the day before or after a holiday I don't get paid either. Once I was so sick I had no choice and sure enough I was not paid for the holiday. I understand why companies need rules but sometimes people cannot plan their illnesses, OR emergencies.

I went to my friend Pati's this morning. It was a brief visit with me dropping off stuff for her new place. Long story but she got herself in a bad situation
and ended up leaving all her stuff in Florida to get back to family and friends and away from a bad situation. Starting over in your fifties is rough. I was happy to share extra sheets and other things to make this place feel like home.
Her granddaughter was there visiting her. What an adorable child with long, curly red hair. I took her a few items too. I am searching for a mommy and me apron set to give them and I have a gingerbread house kit that I am taking them. Also trying to find an inexpensive cd player and some Christmas music. Most of my best childhood memories are with my beloved grandmother. I recently got a check from her estate. I am trying to use a portion of it to help others. That was what my grandmother spent her entire life doing. She never had a nice pair of shoes and we cried when we saw that many of her shoes had holes in the bottom but if she knew of a child who needed food she was at the store getting them groceries. She lived in a modest home, dressed modestly and was a humble woman but when she died all who knew her praised her life of service to others. I still miss her terribly and I think I always will. I hope to be a small part of the example she lived on a daily basis.

Greetings and Salutations

I haven't been blogging much. Truth be told, I have been so tired that I am barely making it to work each day. Many, many changes at work. The first two years I worked there I had the same boss. I went out on disability (2nd bout of pneumonia) and returned to a new boss. Out again three months later and when I returned, yet another new supervisor. Huge adjustments for me. I have been back about four months and just gotten used to this supervisor when she announced last week that she has been promoted. Not even sure who our new boss will be. Her assistant is going out for the month of December and I am nervous about who we will go to with problems.

Last week I had a doctor's visit then the sleep apnea study. I was so tired at work last Friday I could barely function. This week has been another stressful week. Last night I came home, just wanting to relax and Rob went to my mother's to pick up something. He returned with check. This was some of her money from her mother's estate. I understand inheritance but I would much rather be given money from someone during their lifetime. I have decided to do a few good things for others with at least part of the money. I have a friend who just moved into a modest home (I cried all the way home after seeing it.) I am going to find her Mommy and me aprons for her and her granddaughter. I will also take her baking pans and supplies for her to make Christmas cookies and I will take everything for them to make a gingerbread house. I will have vicarious pleasure. Perhaps get some pictures of them which can begin an album for Kayla. Kayla lives with her Dad who has custody of her. She is a young six years old and started school this year. It's hard for a little six year old to understand why Mommy doesn't show up for things like other Moms. Her Grandma plays a key role in her life. I think Santa will leave a few things hidden under her Grandma's tree (perhaps another gift.) For the first time, I am excited about Christmas this year.

Fox was off of our cable station for nearly two weeks. They are finally back and I am going to view tonight's shows. Tomorrow is Friday. Can't wait.