Labor Day Weekend

Labor Day weekend stirs a lot of emotions for me. September third is the day my one grandfather died. (He had been misdiagnosed with pneumonia and when it hadn't cleared up in two weeks they discovered he had stage 4 lung cancer and he was gone a few days later.) It was also the birthday of my first love, my teenage love, whose heart I broke. He died ten years ago but I still remember him and our three years together. He taught me what it was like to feel truly loved. Labor Day weekend many years ago was a day spent waiting for my son to be hospitalized for a bone marrow and on September 4 we learned he had leukemia but it would take several more days to find out what kind. I can still remember the physical feelings I experienced when they said those words and I fell into a chair in utter shock. I am so grateful that he survived it, that we got through the three and a half years of chemo he needed and that over the years he has learned to let a lot of anger go. It's hard to lose your junior year of high school and return your senior year when you feel you no longer fit in. It's hard when the time comes to try to return to what was your normal life before.

Today Rob and I slept in until almost 8 a.m. Normally the dog will not permit this. I took a shower while Rob made his first cup of tea and then I made a list of things that needed to be done. He got dressed and bolted out the door to begin the shopping. He went to Staples and got ink for our printer, went to the supermarket and got several bags of groceries, then on to the Home Depot where he got a new shower nozzle. This one can be hand held and will be a big plus when Duffy needs to be shampooed. Our old one was a water saver that felt like you were being teased as opposed to having a real shower. Hope this is better for that purpose. Rob came home and installed the shower head, dumped and washed the litter box, weeded the flower garden, had lunch and read. Now he is taking a much needed nap. I hope he can find time over the next three days to kick back and relax. Our lives have been so hectic over the past few months........
Yesterday I got a call where I had to regive all my information from my previous jobs. I realized I was about to bounce a check (having finally balanced my checking statement) and called my Mom to run me to the bank for a quick deposit. After doing that I took her out to breakfast and I took her to Costco to get gas (she isn't a member). We went into a candle store for a few minutes so I could pick up a gift I needed and then home again. I can't shut car doors due to the weight so I feel like a child being placed into the car. When we arrived home there had been several messages left from my medical providers. It seems they all knew my health insurance was cancelled as of August 31st. I explained that I had secondary insurance which was now primary. They told me that they were told it was not and I needed to get this straightened out. The company who furnishes my oxygen wanted to be able to verify right away that I would be covered. I was so exhausted and frustrated. Less than six weeks after the surgery I have to go through all this? I had called the insurance company on Monday and explained all this to them and faxed over what they requested that very day. I called them again and "Monique" advised me that I would need to hold while she investigated. I was put on hold and after about half an hour I hung up. NEVER once did she come back on the line. That is considered call abandonment where I have worked and grounds for firing. I called back and got the person I had spoken to before on Monday. She had not received the fax I sent, told me to resend it and she would call to confirm she had it as soon as she got it. An hour went by and I sent it again.....after another hour passed I called again and got Susan. Susan apologized and explained it takes them 48 hours to receive faxes (thanks for all the bs Sadie) and that she would call my old insurance company and have them verify on the phone and she would update the record herself. I was surprised: someone who had intelligence AND initiative unlike the other two reps. I held on about ten minutes and Susan came back on the line telling me she had all the information necessary and would update the system. She then asked if I wanted her to call the providers and verify my coverage to them. Impressive! I told her I would take care of that and thanks her for her help. So about six hours later this was finally resolved.
As soon as my new information was entered a different provider called me to let me know that it was all updated. I'm just thankful that my brain was working well enough to handle all this. It hurts after I hold the phone for too long. Good thing physical therapy is covered....I might need some.
Have a great Labor Day weekend!

Anniversary

Today is our ninth anniversary. I met Rob two and a half years earlier. I had been so unhappy with my former spouse that Rob was actually afraid to propose thinking I might not take another chance. Emotionally I was still healing and it took time to release some of the things that I had to in order to move on. I had envisioned myself being alone for the rest of my life. I would have a dog and lots of family members but I really felt that a husband was not something necessary for my happiness. About that time I met Rob. He was fun and patient and everything that I would have wanted in a man but I was not going to let myself get caught in that again. No way! I told Rob this on our first date and he told me marriage was not something he was interested in so we were both at ease. That's so funny looking back. On our first date it was like we had known each other for years. I was never so comfortable with anyone on a date and he made me laugh. I had forgotten how to laugh. Some two and a half years later we got married in an intimate ceremony of about forty. Our song was "Come Rain or Come Shine". We had both been listening to that song one day and blurted out at the same time "This would make a great wedding song!" Sometimes we actually complete each other's sentences. I swear that he can read my mind at times!

When most people take vows they don't think it through. Sickness? When you're young and invincible who can imagine that? Just two years later Rob went through my first open heart surgery with me. About six months later he went through two surgeries with me for breast cancer. Now, a month ago he went through the second heart surgery. It's a lot. He has never complained one time. I have apologized for having to ask him to get things/do things for me and he tells me that I have no reason to do that. He does everything with devotion and caring.

Sometimes I think that I might have been too afraid to have taken a chance on Rob. I would have missed out on so much. I am so grateful for Rob and his love. I wish everyone would be loved like this because it's what gets you through the really hard times. Thanks to my friend Diana who encouraged me to make my own decision but gently reminded me that love might not come again. Rob (like me) is not perfect but he is perfect for me.

The Weekend

The newscasters really felt Irene was going to do some rather heavy damage here. Thankfully, little was done except for some people losing power (most already have it restored) and some road flooding. I realize that if your road is one that is flooding and cutting you off from getting to the next town, it is anything but a minor nuisance. One neighbor lost a tree but we did okay. The rain and wind was strong Saturday evening and I slept through the night for a change. Normally the sound of rain hitting the windows keeps me awake.
Rob and I had someone come in on Friday and put a pull down door and attic stairs in for us. Since we don't have a basement we rely on our attic to hold holiday decorations and such. The contractor did a marvelous job and the stairs are metal and sturdier than the wood ones. I have not been in my attic since my first heart surgery as I could no longer pull myself into the attic. This will be a great help to Rob and I. The downside was this was in a walk in closet and we had to remove the clothes. I wasn't able to carry more than two hangers at a time so my Mom came and did a lot of moving my clothes. Some of my clothes are twenty years old! I always used to buy quality things and take good care of them so they are still in great shape, although now that I can fit in them again most of them are "out of style". Although I buy more classic than fad clothing, shoulder pads? Oh no, I forgot how badly they looked. I filled three bags for donating. Trust me, there is plenty left! My clothes vary in sizes. I have a wedding September 10th and my dressier dresses are all too big and would need alterations. I am debating between two of them. They are both black but one is an empire style with a hot pink bow/ribbon and the other is piped in a lime green but has a full skirt. While I can get the top altered on the later I cannot get the skirt taken in. I've already had the bodice taken in.
Each day finds me with a little more mobility and a little less pain. The nights can be troublesome as I move in my sleep and that can wake me up. The pain meds or Tylenol have worn off and getting out of bed is tricky to get some more.I can keep them on my nighttable but need more water anyway.
I am doing so well. More later.

Staples out: 31

Yesterday I finally got my 31 staples removed. The top by my neck and the bottom really hurt. Hard to believe they were in there a month! First surgery they only leave them two weeks but a "redo" takes longer to heal. My scar is hot pink and long. YIKES. Good thing I am not vain. I have a wedding in two weeks and there is nothing I can wear that will camoflauge it. I am also worrying about clothes rubbing on it. Still cannot drive for two to four more weeks but I don't think I would have stamina anyway to shop so that's okay.

I posted a comment answering all the comments on the previous post. I love your comments and good wishes. People have offered to send meals and other generous things. I don't have much of an appetite and it hurts to do most things that require use of my arms. I have to be careful now that the staples are out, the incision isn't 100% healed yet. I'm not allowed to cook and I think that is the thing I miss the most. I love to cook and bake. The Fall is coming and there will be lots of time to bake. We just have to get through the hurricane first this weekend.

And the beats go on.............

The past few days have been really tough for me. The more I do, the more pain I experience. I am not really supposed to be doing anything but when I am home alone I make myself toast or tea and even that hurts. Moving hurts.

I have so many things that I simply must take care of. My employer fired me and my health insurance ends August 31. I had to get onto my husband's at that time. That meant checking to see that all my doctors accept his insurance. Good news on that front: two that were out of network on my insurance will be IN network on his. Problem is I had met ALL my deductibles under my insurance and will now have to meet them on his. My income has ended and I am not eligible for unemployment. My short term disability is exhausted. Thankfully, I had inherited a few thousand dollars about a year ago and held onto it and am using that now to subsidize our bills. Thank God I didn't run out and do something extravagant with it.

My days are rather quiet here. I take a few cat naps throughout the day. During the day I try to take Tylenol only then the stronger pain med to sleep. Some nights I cannot get comfortable and just can't sleep. Yesterday I was laying in my recliner when it began to vibrate. My windows shook like a huge wind was coming. The cat stood up on the sofa like what is going on? I then felt the sofa which was also vibrating and I thought perhaps a jet had crashed. Put on the tv and quickly learned it had been an earthquake. Interesting. Things just get stranger and stranger.
I am supposed to get my staples out tomorrow. There are 31 and very irritating and have been in almost a month. I want them out but it will be painful because of the sensitive area they are in. I don't look forward to that part. On Friday a man is coming to put pull down stairs on my attic door. That way Rob can access the attic without all the ordeal of carrying a ladder upstairs etc. which is not safe anyway. This Christmas will be so much easier as we keep our prelit tree and all up there. I sense Fall in the area. It's always been my favorite season. So glad I will be here to enjoy it. The doctor said I am "resilient". Two time cancer survivor, two time open heart surgery survivor with two mechanical heart valves. Yes, I think that is the word for me. It will only get better from here. The future's so bright I gotta wear shades. :) My only goal for the future is to get my health back and I feel it coming.

Finally a posting

Dear Friends,
Thank you for all the emails, cards etc that I received from you all showing your concern. Judith HeartSong made me a card that is a work of art, so lovely. The first few days were going swimmingly (under those circumstances) but then they told me that the surgery had caused me to have "heart block". Never heard of that but I had an auxiliary pacemaker which was doing all the work. The surgery I had can traumatize the heart through the swelling especially and leave you with this condition permanently. They thought I would need a pacemaker before leaving the hospital. The initial surgery was very difficult but the surgeon believes it will be successful. It will take six months to know for certain. After a few more days the heart block seemed to have resolved itself and they were able to turn the pacemaker to back up only with an alarm set. We were all thinking that we had escaped another surgery for me and were thrilled. Over the next few days I developed some slowing down of the heart rhythm and they once again became concerned. Just when they thought I was out of the woods totally I had a "pause" in the heart. My heart stopped beating for over five seconds and I was rushed into ICU to be closely monitored. I was conscious the entire time and it was unpleasant, feeling like I was fighting to remain conscious. Rob was allowed to spend the night in ICU with me and I was so relieved about that. I knew if it happened again I would be shocked and I did not look forward to that. My heart straightened itself out and two days later I was released to the step down unit once more. I am home finally.
I am tired and in pain. Imagine having a sternum that was broken not once but twice, wired together and a swollen heart that was removed from your chest, had a piece sawed out of it, replaced with a mechanical piece. I also received a bypass to replace a radiation damaged piece of my coronary artery.
Does it sound like I am complaining? I'm not. When I realized I had survived the surgery, tears of joy ran down my face. More time with those I love. I know that the next few months ahead will be tough but I am hoping and praying to hear late December that my heart is functioning well. Regardless, this was a surgery I had to have. I was in heart failure and it was the only possible fix.
Will write more soon. Thanks for keeping me in your thoughts and prayers. I was counting on you and you didn't let me down.
:)

nelles update

hi everyone, Rob here. two weeks today still in hospital,

returned to ICU early Saturday morning. complications being addressed, hopefully return to step-down unit sometime today. surgery went well. thank you all for your emails, comments and prayers. ill post more details when i get home.

Random Thoughts

Yesterday was a grueling day. It began with a trip to two banks and a pharmacy. It was 107 outside with poor air quality. My lungs were not happy. I came home and began the arduous task of filing for social security disability. My company's long term disability carrier told me that I had to and if I didn't they would be deducting the amount from what I would get. Apparently, if you are out of work a year you are entitled to this. Besides, there is no guarantee that the surgery will eliminate the other issues, although I am optomistic about it. We shall see. It took me literally hours to find dates of hospitalizations, addresses of doctors and they asked for lists of tests done. Their system didn't allow for over twenty CT scans done in the past two years. I felt they had plenty to work with anyway.

I am on a low sodium diet with strong diuretics to keep the fluid off. This has lead to some real constipation issues. I was in a lot of discomfort last evening.

I am dealing with some friends who have real issues too. They want to lean on me about their issues and it's hard to be sympathetic sometimes. Many people create their own problems and think they are much more difficult than mine. I would love to have them walk a mile in my shoes.

I came across a poem I love. I love ee cummings. I love Rob.

i carry your heart with me(i carry it in my heart) i am never without it(anywhere i go you go my dear;and whatever is done

by only me is your doing,my darling)

i fear

no fate(for you are my fate(for you are my fate,my sweet)i want

no world(for beautiful you are my world,my true)

and it's you who are whatever a moon has always meant

and whatever a sun will always sing is you

here is the deepest secret nobody knows

(here is the root of the root and the bud of the bud)

and the sky of a tree called life;which grows

higher than soul can hope or mind can hide)

and this is the wonder that's keeping the stars apart

i carry your heart(i carry it in my heart)

Sleepless in Englishtown

Today was really a rough one for me. It started out well with the new mattress and box spring being delivered and the recliner. I was expecting a friend to come for the afternoon. I had just made up the new bed when the phone rang. It was my employer. They made an administrative decision to let me go. Although I felt this was a possibility it was shocking to hear. I actually broke down and cried on the phone. While I can Cobra my health insurance, Rob was on my dental and as of August 1 we won't have dental until we can sign up with his company for the next year. I also loose my life insurance. What I don't understand is why they didn't let me know sooner. This call put me on an emotional roller coaster.

My first feeling was shock and disappointment. In October I would have been there four years. The first two years my attendance was stellar and so was my job performance. In July 2009 the health issues began and I was out on disability several times but always made it back within the short term disability period. This time, I couldn't. Next came a wave of anger at the doctor who had been my cardiologist for about eight years. He failed to find the problem and the fluid back up from the heart was keeping my lungs wet and causing me frequent bouts of pneumonia as well as leg swelling and I was exhausted for much of that time. In hindsight I am amazed I was able to work at all. Most days I came home from work and ate something, then went to bed. I went to the doctor so many times with swollen legs and even when he saw that I was on oxygen all the time and so short of breath he told me it couldn't be the heart. How wrong he was. Now I have lost income for two years, lost health (my lungs will never be the same), and now my job. I can't explain how he laughed when I made inquries about all these issues. My lung doctor repeatedly said she thought it was my heart and he just shrugged off anything she had to say. In the end it was she who was right.
Tomorrow my mother wants to take me and my sister-in-law to Lancaster for the day. A diversion from all that is happening. Not sure I am up to it. I can't even sleep tonight and there is a heatwave here in the NorthEast. Going to be 95 again tomorrow and over 100 Friday.
I am moving forward. Next week will be so difficult for me but I have to keep telling myself that I have to do this. Without the surgery the heart failure will overtake me and my existence will be miserable fighting fluid overload. I want to get through this and move onto a better place, where I am once again living.
This is so hard on those who love me and I hate that they are having to go through this with me. Please keep us in your thoughts and prayers. I won't be online after Monday, July 25 but surgery is 27th.

Retail Therapy

Last week my Mother got a check for life insurance from my father. It was a small policy and she decided to divide it amongst her five children. I thought that was nice but of course, it's difficult to enjoy receiving money under these circumstances. You feel guilty yet grateful.

Rob and I have had many things we have needed for a long time. Our favorite chair (a chair and a half) with the wonderful old world upholstery is worn out. The cushions are crushed and it would be so costly to replace them, it would make no sense to do it. Also, we are in a smaller house now and it's too big for the place we want to put it in. Yesterday we bought a much needed recliner. The cardiologists have wanted me to elevate my feet for years and suggested one. I always hated how large and bulky they were and yesterday I found one that was just normal chair size and would work for us. We bought it. Then we wandered over to the carpets and found a lovely new rug for the room so we ordered it. I love it. We then made our way to the bedding department and treated ourselves to a very good mattress and boxspring. It's very firm which is what both of us need for our back issues. The chair and sleep set will be delivered Tuesday. The rug will be shipped within the next few weeks. We then went to LongHorn for lunch. They have a salad I love there, the Sonoma chicken salad. After savoring our lunch, we went to the mall and I got a screen protector put on my replacement phone. I also got a better case for this one. It felt so good to have money and shop without worrying about bills coming later. I spoiled myself. We came home and had a nice relaxing evening. The surgery date approaches. I have yet to have my claim approved and the company tells me neither my employer nor doctors have submitted paperwork and that is my responsibility. I am not sure if I can get this all taken care of before I am admitted into the hospital July 25th. Trying not to sweat all this stuff. I am in such good physical condition, compared to where I was six months ago. I pray that in a few more months I will be getting stronger and better each day.

Hot....Hot...Hot

It's going to be a sweltering 95 today. I wonder what it will be in Florida since we are in the NORTHeast. On Monday my mother-in-law is taking her other son, and our niece to DisneyWorld. They have never been before and I remember when I went many years ago in July and knew I would never do that again. This is why Fall is my favorite season.

In my last post I mentioned reuniting with a friend and since then I received an email and later a phone call from our third friend. I am so happy. Believe me, I need all the joy I can find right now. My mother is feeling sorry for herself. Understandable because she lost her husband of 60 years just four months ago and doesn't know how to go on without him. My Dad made all the decisions. She has five children who would all advise her differently what to do. Two family members have had some differences and involved others and she gets pulled into it all.

On the bright spot my sister gave a wonderful shower for her oldest daughter on Saturday. It was in a nice restaurant and beautifully done. This niece is my Godchild and I got her the Emeril cookware on her list. Wow! The prices of the gifts are overwhelming compared to my original wedding shower so many years ago. (When I married Rob my matron of honor lived in another state and I didn't have a shower but since I had a house full of stuff, I didn't need one.) My niece got a Dyson vacumn and beautiful comforter sets, everyday dishes at $100 a place setting and china. On the way home my Mom said "to think that I received tea towels mostly as gifts." Different world back then. It was a joy to see her so happy and her sister who will be her maid of honor. I am hoping and praying I will be up to the wedding early September. Even if I am in a wheelchair because I can't walk far or huffing on an oxygen tank, I plan to be there. This is a picture of me with the bride to be. I scrunched over to put my head on her shoulder. I had a great summer dress but it was so cold there I had to have a sweater on the entire time (haven't replaced sweaters and they are all too big.) Have to wash the floor because my mother's pastor wants to come visit me and pray with me today. Yesterday I was short of breath again but I think it's because of the air quality and extreme heat. Stay cool everyone.

A Gratifying Tuesday

Yesterday I did something that was long overdue. I went and made things right with a friend that I love very much. When I was having my last heart surgery this friend was supposed to go out with myself and another friend and at the last minute her then boyfriend called and insisted she see him that night. (She just jumped through hoops for this guy and they are now broken up.) I was so hurt. Later when I came home from the hospital and she called I wouldn't take her calls. That year she sent me flowers on my birthday and I sent her a note thanking her for them but telling her I was so disappointed in her as a friend. Now that I am older and wiser I like to think of a quote I once read "Stroke it don't erase it." A few years ago I began to think of all the times this friend WAS there for me, and there were plenty. We met when our children had leukemia in a support group. I was in her home the last weeks of her daughter's life and there for her afterwards. That's what hurt me so badly. I now realize this: she made a mistake. A friendship shouldn't be lost because of a mistake. So I have thought about her hundreds of times. Yesterday I was out running errands and I got detoured and found myself in front of her development. It was karma and I knew it was the right time. I rang her bell and she opened the door. We both stood there hugging and crying for a long time. Then she invited me in and we sat down at her kitchen table (as we have for twenty years) and had coffee. There is not much as gratifying as a visit with an old friend. No one else understands what I went through with my son. She was part of it. She was always wonderful to him and like me, he loved her daughter. I explained to her that I made a mistake and she said "Don't explain. You're here and back in my life. That's enough." She then called her friend to tell her and she was thrilled also. I am now trying to reunite a third friend of ours. I have mailed her a letter this morning. Let's hope soon the three of us will be together again. One of the best times of my life was when they took me to Atlantic City for my 40th. The following day they had a surprise party for me as well.

Poor Air Quality but Beautiful Out

For two days they have warned of the air quality. It has been beautiful and sunny though. In the evening it's been cool enough to enjoy the patio a bit. For me I love the patio and watching the bird feeder and bird bath. Our next door neighbor has ducks and some of the tiny babies keep wandering into our yard. Rob leads them back (they follow him like he is the Pied Piper) and I even got a few pictures of him holding one. They make so much noise for their tiny bodies. Our pets are intrigued by them. They are contained in our fenced in portion of our yard so no threat to them.

I have had so many phone calls from the Univ. of Penn. Hospital. They pay attention to the smallest details. I should be admitted a few days before the surgery as I will need to go off of the Coumadin but instead be put on Heparin.
For those of you who are latecomers to my blog, I have had this surgery previously, with my aortic valve. It's a big surgery and the normal procedure is for them to cut through the sternum and wire it back together. Some people say it is not very painful and others find it to be very painful. It seems that more people who receive tissues valves (such as bovine or porsine) have an easier time of it. I have a mechanical valve and will be receiving another. I ran into some complications with my last surgery and I ended up in CICU for over a week. (I had been told that I would be in the hospital for a week total.) After I left ICU I spent another ten days in a step down unit. I experienced hallucinations after being given a sleeping pill and ripped out all my ivs. I was confused and when their was a power failure and I was on a ventilator I became so panic stricken. It's not just the physical that you deal with. I do believe I am going to the best place and will be using top notch doctors. The doctor who will be performing my surgery performs heart and lung transplants. He is prepared to deal with problems.

I continue to do very well with breathing. For the first time in months I am able to leave my house without an oxygen tank and it is indescribable the joy I feel when I just walk across a parking lot without gasping for breath. I swear that I will never.....never ever....take breathing for granted again.

Feeling Joyous and Grateful

I am hopeful, oh so hopeful today. My wonderful pulmonologist, Dr. Gilbert, did my pulmonary function tests and they were greatly improved. Numbers such as 43% changed to 80%! I don't know who was happier the doctor or me. She had to fax a note to my employer today. I won't be able to return to work until winter. Once I have the surgery which wouldn't take place before July's end, it will be along recovery, including cardiac rehab. I am so hoping that my company will allow me to be on long term disability until that time. Financially, it won't be much at all but what is my life worth? Certainly worth more than the money I would earn if I worked but watched my health steadily decline. There is a window of time a diseased valve can be replaced but once things happen that would make the surgery unlikely to have a good outcome, that option is gone. I cannot wait. This is a big surgery. I will go into the details at another time but they will be doing two or three things at once. What I have is serious, but there is a "fix" to at least make it much better if not fix it altogether. The people in the doctor's office were surprised when they saw me. In the past month I have lost 24 pounds. Most of that was fluid that had accumulated because of the heart problem. About seven pounds came out in the chest tube and the rest has slowly come off with medication. I had to buy new clothes which has been fun except that my short term disability money has been exhausted. No pay unless I get approved for long term. Even so, that will be a fraction of what I made. Over the past two years we have lost so much income and had so much medical expense. Thankfully, I have had some money put away for medical emergencies such as this. We'll get by and what good is money if you don't have your health anyway?

Even though I am facing another heart surgery (and it's scary) I am so thankful that I live in a place where I have this option. I am so thankful that Dr. Gilbert went the extra mile and brought in cardiologists so we finally learned what the real problem was. The glass isn't half full, today it is brimming with hope. :)

The Waiting Game

I am still waiting on the final word of whether or not the doctors in Philadelphia will proceed with the surgery. My last set of lung functions tests (taken while I had so much fluid in me) were discouraging and they want to see better results. Sometime in the next few weeks I must have those tests redone. I am also getting yet another CT scan with contrast to clarify something else they found. Today I am down about twenty pounds from where I was a month ago. I now weigh about sixty-five pounds less than I did when I had my heart surgery seven years ago. That is without any surgery or diet pills, just lost the weight, particulary over the last twenty months by not eating. Some of it was fluid.

This morning I got up early and went grocery shopping. I am trying to eat a diet of mainly vegetables and proteins with some dairy. Eating little bread, low carbs and low sodium. I just bought an ice cone machine so I can make them and have them with sugar free blue raspberry flavored "syrup". It seems that syrup should be thick and instead it has the consistency of water but is flavorful. I also went to a local farm and bought three hanging baskets. My yard seemed naked. I won't be doing a lot of planting I have in the past. While I am breathing much better, bending over is a bad position for my lungs.

Yesterday was my first Father's Day without my Dad and I dreaded it. We bought a nice wreath for his grave that had a ribbon that said "Dad".
Tomorrow I go to the cardiologist here. I now have duplicated doctors in Penn. Sometimes I have to put myself on autopilot to do what I must. If I begin thinking of all that could happen it's overwhelming. One day at a time.

Home Again (Finally)

I was admitted to Univ of Penn Hospital on June 8th and was discharged last night about 5:30 p.m. I wanted to sprint my way out the door but Rob insisted I leave in a wheelchair as it was a hike to the parking garage. He was so right!

I had the cardiac catherization on both sides and another procedure done which I won't go into. I was awake for the entire nearly two hour ordeal, but the staff was wonderful and comforting throughout. I was given lidocaine at the sites where the incisions were made and a mild drug to relax me. The doctor spoke with me immediately, confirming what we thought to be so. My mitral valve was damaged with the infection in 2009 and now meets criteria to replace it. It is causing the pulmonary artery to have high pressure and my body is making a lot of fluid to compensate. Most of the fluid removed was already being replaced. They gave me some great drugs to get about ten pounds of fluid or more off of me. I feel wonderful again (except for soreness and fatigue.) Now a team at that hospital has to examine my hospital records to see how to proceed. My lungs must be determined to be able to stand a surgery if necessary. There is no point in trying to make one thing better if in turn another organ will be injured. Whatever they advise me to do, I will do.
One very disconcerting thing that happened was on Sunday morning. My roommate (whose lung was filled with fluid) passed away. I was talking to her a few minutes earlier. They rushed me out of the room into a private room. I think I went into shock and the rest of the day I was just barely functioning. I was so happy to come home. I keep thinking of that dear woman though and feeling that perhaps I should have done something more to help her. I kept reassuring her that when I was full of fluid I was in the same distress. They tell me she might have had something more wrong with her.
Well, I am beat. I went to the local hospital for a blood test, made phone calls all day and made a run to Target after getting my oxygen delivery.
Time to relax now. All in all it was a great day to be alive today. Thank you God.

Update from Rob

As you may know Nelle has been struggling with some health issues. On Tuesday she was admitted to the Hospital at the University of Pennsylvania.
She has asked me to let you all know that the procedure went well and she expects to be home. Sunday.
Thanks for all your good thoughts and prayers, they are much appreciated.

Rob

Lend a Helping Hand (if you can)

There is a cancer blog that I found via way of Susan's blog. She had a link to help you this woman who needs to raise funds to go for cancer treatment. If you can help her that would be great! Jeanne can really use a donation to help her get the treatment she needs. Please check her blog out and think about whether or not you might be able to help.

Waiting for my call from Univ of Penn Hospital telling me to come. I am going to be admitted today with the procedure tomorrow, Thursday. Nervous but eager to have it done with and know exactly where I stand as far as repairs or future surgery. Please keep me in your good thoughts and prayers and I will post when I can, most likely not before Saturday. Stay cool in this heat wave!

Now For Something Completely Different

It's been awhile since I made a blogging post that wasn't about my current health issues. I just read my friend Cynthia's entry and it got me thinking about forgiveness. When I was younger it angered me when people told me I needed to forgive others. Being raised with Christian values, this was a great source of conflict. I always felt this righteous indignation and for some reason that seemed to give me strength. Then I clung to the belief that forgiveness would only be granted if I received a request for it (even then I had difficulty granting it.) I began reading books and watching therapists on television who spoke about forgiveness. I began to realize that there were times I needed to ask forgiveness and never had. Oprah talked about how forgiveness was actually good for yourself. I began to see the other side of the coin. I began to think of things that had been done to me. One of the best examples was a childhood friend I used to have. I called her when I had cancer. She had a baby girl about a year younger than my son and I asked if she could watch my son some of the times I went for radiation treatment, maybe once a week. When I began to explain to her about the cancer she cut me off and abruptly said "I have to go. This is too depressing and I can't be your friend or help you." I heard her hang up. I sat there in shock and disbelief. I had known her at time for about twelve years. I carried this hurt for the next twenty something years. I was actually afraid to ask other friends for help for fear I would lose their friendship too. About twenty years later she called out of the blue acting like this had never happened. Over time, although it was never asked for, I forgave her. About five years after that she stopped speaking to me again one day, no explanation was ever given but I heard that she was upset with me because of a comment I made regarding her daughter's wedding we had attended. It was a buffet and our table was never called. Other tables were going up for seconds and I went over to the table and told them our table had been skipped. By that time there was nothing left but salad. It was very disappointing. Looking back, I have to laugh at this. I realize now that she has major problems that have nothing to do with me. I forgive her again, not for her (because she doesn't care) but for myself. We are all flawed individuals. Myself included. In life, it's just so ridiculous for someone to end a friendship over such petty things. REAL friendships endure those things. I think more than anything, I have realized that we use the word "friend" too often to describe an acquaintance. If someone hasn't been in your home in years (when they have been everywhere else they have wanted to be), is never avaialable when you need them, or never makes time to stay in touch they're just not really a good friend. In life we have so few really good friends. Ironically, so often the friends who are never there are the very ones who tell you over and over that they will be. I have learned not to count on people. In the end, I count on myself and if anyone else is there for me it's a bonus.

What we have here is a failure to communicate....

Good night! I have waited home for three days to get everything squared away with Univ. of Penn. The doctor's secretary has been trying to set it up but she had no medical knowledge and was not able to answer ANY questions (although she was a lovely person.) My doctor didn't give the doctor ALL the information from the report and there is something that I think might deter him from proceeding. Yesterday I spoke with his nurse who assured me she would get the answers for me. Still waiting. I did take my cell phone and go out and have a pedicure and lunch (salad with avocado and a freshly made balsamic vinegar dressing that was yummy.) I felt pampered. It was a good day. So I still wait for the answers to a few questions but for right now it looks as though I will be admitted June 8th with the procedure on June 9th. The mere thought of this makes me feel faint. A girl's gotta do what she has to do and I have to do this. My back is so achey where the chest tube was. It's badly bruised. Give me a minute to get a little cheese for that whine. Baby Bel. :)

It was GORGEOUS today. Sunny with a breeze and high was just under 80. WE might have dinner on the patio. It needs a little cleaning first. I have to have meals on the patio in this weather, especially anything on the grill. The other night Rob made the most delicious peppers on the grill. Cutting carbs from my diet was not nearly as difficult as following a low sodium diet. It's in everything. The only way to avoid it is to make everything fresh or frozen vegetables. I love tomato sauce and that is loaded. Trying to find some with low sodium but so far no luck. There has to be a market for this. I love Hebrew National 99% fat free franks but they are way over the top. I don't know if I will ever enjoy a grilled dog again. Maybe an occassional bite. Eating out is even more problematic since they don't give sodium information on menus. When watching the cooking shows they are so liberal with the salt. I do use sea salt but still I am so restricted.

Have I mentioned lately what a wonderful spouse Rob is? Yes, like me, he is not perfect but he tries. He has been giving me my evening belly shots. They hurt and I hate them. It's easier for someone else to do it. Rob gets along great with my son. He doesn't try to parent him but gently explains at times why I do things. My son worries about me like a mother hen. He wants me to follow his rigid vegan diet (which doesn't include fish, eggs or dairy.) I try to explain we all have to do what is right for us and respect the choices others make for themselves. He wants me to drink coconut milk. If I'm having coconut milk I want a pina colada not cereal!

I'm here and I'm doing okay. This will pass and I will get through it. After all, I am bionic.

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.