Monday, November 18, 2013

Hope on the Horizon

It took nearly a month for me to get into a good gastroenterology office. Immediately the doctor knew what was wrong and gave me this diagnosis (I googled it and will post the explanation of what it is taken from

In general, PCS is a preliminary diagnosis and should be renamed relevant to the disease identified by an adequate workup. PCS is caused by alterations in bile flow due to the loss of the reservoir function of the gallbladder. Two types of problems may arise. The first problem is continuously increased bile flow into the upper GI tract, which may contribute to esophagitis and gastritis. The second consequence is related to the lower GI tract, where diarrhea and colicky lower abdominal pain may result.[2] This article mainly addresses the general issues of PCS.

 These are the symptoms I have been dealing with for months. If I ate anything I immediately felt bloated, developed heartburn followed by stomach pain and diarrhea. There are meds used to combat this. One binds the bile together and prevents so much of it being absorbed. I have to drink that twice a day. The other is Probiotics and the third is used to treat a miserable hemmroid I have developed. I am hoping the end is in sight. This has been misery.

I have a slight cold I think. I am coughing and more short of breath than usual. We had two things planned for Saturday and I couldn't do either one. Sunday I managed to get to church but we came right home afterwards. I was grateful to be able to do that.

Today  an old friend is coming soon. We met when her daughter and my son were being treated for leukemia so many years ago. Her daughter is gone and she carries on but is not the person she once was. I saw her in August. She has been busy having foot surgery and recuperating herself.  Wednesday I get to spend time with my friend Monica so it's a rich week for me. It's so disconcerting how many friends I once had who just slowly went away. A few of them found me on Facebook and wanted to tell me how much they cared for me. I'm sorry but I learn from your actions, not your words. I don't want to sound depressed. Life is a set of learning experiences. I am making many new friends in my church. These are genuine caring people. Nothing lifts your spirits like a warm embrace. You don't get that on Facebook.

That's about all the news for now. It got really cold but the weather is nice today. People think I am crazy but I eagerly await some real snow this year. Now that we have a generator losing power won't be so much of a problem. We love our new neighbors. They are very young but oh so sweet and helpful. The walk in love. :)

Friday, October 25, 2013


I finally had my right heart catherization. It was not what  I had hoped for. Not only had my pressure not gone down, it had increased in my lungs. My heart was worse bearing this pressure and that of fluid in my body. It was disheartening.

Rob and I began going to a new church a few months ago. It has lifted my spirits tremendously. The people are loving, kind and friendly. They are a nondenominational church who basically believe in reading and teaching the Bible and following it's teachings.

Tonight my mother is having all of us go out for my father's birthday (Oct. 27th). Why we do this now and not while he was alive and would have enjoyed it perplexes me. It also reinforces my belief that we should do things NOW for people, not when they are gone. This week one of my dear friends from high school lost her mother. Another friend's father has been in critical condition for over a month and they were removing him from life support last night. She lives in Florida and had come to be with him in Pennsylvania for a week. Her husband is also quite ill and she won't be able to come back for his funeral.

I deactivated my Facebook account. I just can't take all the whining from people who have no clue what real problems are. Some people who have known how ill I have been for YEARS make posts such as "love you." Really? Sorry, but if you have known I was critically ill numerous times and never acknowledged it, I do not believe  you care much less love me. It seems so many people throw these words around so lightly. Instead of "have a nice day" they want to say "love you." Frankly, I've had enough of that. The people I know love me don't have to tell me, I see it in their behavior. These are the faithful who have sent me emails, snail mail cards, called  me, invited me out. The diamonds of this group have come here to my home when I couldn't drive to meet them. Those are the people who love me and they know who they are.

I am tired. I am not feeling that great. I just felt I needed to update. Have a good weekend and for all my diamond friends: shine on you crazy diamonds. :)

Tuesday, October 01, 2013

Fit to Be Tied

My Southern relatives have some great expressions. With all that's been going on I am "fit to be tied."
I went to my pulmonary hypertension doctor last week. He wants a right heart catherization done the tenth (earliest he could do it.) My pressure seems to be what it was before the meds. Symptoms were better, now they don't seem as good as they were if I am perfectly honest. On Friday night I went to a craft show after about fifteen minutes I just couldn't go any further. I didn't complain about how I felt not wanting to ruin my sister-in-law, sister or mother's good time. I went and found a  chair and got permission to sit on it. The woman was very kind. The minute I got home the oxygen went right on. On Saturday and Sunday I felt really bad and Rob had a cold. Not a thing got done around here on a weekend which is unusual. We didn't even have meals. Rob had chicken soup from a box and I had pb&j sandwiches when I wanted anything.

On Monday I headed off to the cardiology office to have my blood thinner tested. It was high, meaning the blood was too thin. This is dangerous. On my way there I began to see what looked like a spiderweb in front of my eye, black and  being torn into pieces. When I got home my aunt called and told me that was a symptom of a torn retina. I called my opthamologist and he had me come in at 4. Everytime I got in bright light it got much worse. He told me that the vitreous had detached in my right eye. He didn't find a retinal tear which sometimes happens together. I go to see a retinal specialist next week. I also go back for a repeat blood test and to Philly to have the procedure done. It will be a hectic week.

I am so tired, mentally and physically. I need a relaxation break. I need a pedicure. Maybe tomorrow.

Tuesday, September 03, 2013

Catching Up on Overdue Things

The last two weeks have been a flurry of me trying to fit into a ten day period things that should have taken place over the past six months. I had my yearly mammogram (4 months late) and my bone density scan and saw my internist. The mammogram was the trouble spot. Nine years ago I had a breast cancer in the right breast. The surgeon who did the biopsy knew it was cancer and removed what he thought necessary and closed it up. When I went to see him he told me I would need some radiation and to be on a chemo pill for ten years. I had just had the open heart surgery six months before and so I called my surgeon and asked him what he thought. I actually knew the radiation was out as I had my max years ago. The tamoxifen was what I was wondering about. He told me I could not take it as it can cause blood clots and he advised me to go see the top breast concologist at The Cancer Institute of N.J. I told him that you couldn't just get in there without a doctor referring you there and even then it might be tough. He made a phone call and I got an appointment within days. They insisted I have more breast tissue removed as they didn't feel the margins were large enough so I had the second surgery. When they called telling me they found something in the breast I assumed it was the same one. It was in the other one. I went back, had more films taken and they told me they THINK it's benign. I should have another mammogram in six months. You THINK it's benign? Are you kidding me? Needless to say I need to follow up on this but I am dealing with a few other problems in the meantime......

For several years I have been on a blood thinner. My doctor won't allow me to take the generic as I formed a blood clot on it so I get the name brand but pay generic price. When I obtained the doctor's override I was told it was good as long a I was on the drug. My last shipment arrived and it was over $100 more. I immediately called them and Express Scripts told me my husband's company had changed their benefits. That seemed quite odd to me, it was not a new year. I even spoke to a supervisor who told me that. I waited and called back a few weeks later to be told that I was given wrong information and all I had to do was fill out a form with the information and send it back to them, which I did. I received a letter of denial so I called again and was told that my doctor needed to submit a letter. By the time they accepted my doctor's letter two months had passed. I never paid the copay because I was told that I would only owe the lesser amount as the original authorization was still good. Talk about a run around.......Now I am STILL waiting for them to credit the account and in the meantime they told me they won't send me my other meds even though yes, they agree, the mistake was their's in the first place. Does this make any sense at all?

As though that weren't enough.....I take an expensive medicine for my pulmonary hypertension. This was approved and I have been on such medicine for nearly two years. I got a letter last week that they are declining to pay for this medicine any longer. I guess they would rather pay for a lung transplant up the road, that makes sense, right? Express Scripts is horrible. We have looked at websites of complaints. How does this company get away with this? My PH specialist has called twice already but will have to take time from treating his patients to call again. What utter nonsense. I cannot tell you the countless hours I have spent on the phone with this company. Each time I call I get a different story.

Last Saturday was our anniversary. After a stressful week we were determined to celebrate. We went down to one of the beaches with a big boardwalk. There was a huge sandcastle to see, we enjoyed watching the kiddie rides which I would have enjoyed going on as well. We went to a place called Martell's Tiki Bar but it's a restaurant too. We had some good food. I had a Casesar salad with the most delicious crab meat on top. We had a nice walk along the boardwalk. They have replaced the boards with TREK pvc stuff. This absolutely kills my lower back to walk on. I have to limit how far I can go. Parking Labor Day weekend was a nightmare. We had to park at the end of the boardwalk $3 an hour. Rob of course had to drop me off and pick me up closer to the places we wanted to go.

I look back at my eleven years with Rob. I can only say that I thank God everyday for someone who is patient, compassionate and loving through all I have gone through. I don't think most people can imagine what it's like to watch their spouse on a ventilator in ICU. He's seen me in the worst possible circumstances and had to be called in the wee hours of the morning when I've had a crisis. That takes a lot out of a person, especially one who has to be at work each day and has the financial burden of supporting a family when the two incomes ended. It's been so very hard for him yet NEVER have I heard one complaint. Not when I threw a fit over something insignificant because they wouldn't let me leave the hospital or when after waiting days to eat I was given a meal I didn't want and nearly had a meltdown. He just goes with the flow.

It's nearly 5 a.m. Rob gets up in half an hour to go to work. I miss him when he's gone but at least it's just a 4 day workweek for him this week. Somedays I feel guilty. Like I am not carrying my share of the load. I never wanted to stop working. I miss my coworkers and more importantly, my paycheck. It is what it is. There is absolutely no way I could work now with all that happens to me. My friend has a motto" Don't cry because it's over, smile because it happened." I guess when you have survived cancer for thirty years that has to be enough. All the things wrong now are because of the treatment that helped me survive. I can't wish that treatment away or regret it. It's given me all this extra time and I hope to have even more. Most of all, I got to watch my baby grow up. He was only 3 when I initially got sick. He's a man now.

Wednesday, August 07, 2013

Just a Note

Yesterday I was kind of down. It's really hard when the vast majority of your money goes for medical. Things like vacations never happen and we hardly go out for dinner anymore,unless it's someplace cheap. I miss the life I once had. Working enabled us to have such a higher standard of living. My doctors have told me I cannot work again. I know that I cannot but it's still hard to wrap my head around it. So much of my self esteem came from being independent. My social security disability money is so low that it doesn't cover my medical cost let alone anything else. Thank God I have a working husband.

It seems I have developed allergies. My sinuses keep stopping up and I cough a lot. If it persists, I will have to see the lung doctor. It's interfering with my sleep. I still cannot touch any fried food. Last night I decided it had been nearly three months since my surgery and tried to eat a chicken cutlet. I was in so much pain. I must be content now to live on burgers and salads and sandwiches. I can't touch tomato sauce without getting intense heartburn. I just keep waiting for this to get better.

Yesterday my toilet was running nonstop. The only way to stop it was to turn off the water to it. I knew I couldn't afford a plumber. I looked inside and saw that the stopper was in bad shape so Rob picked one up on his way home from work. I think it will be okay now. For me to have to go upstairs each time I needed to use the bathroom was a great difficulty. As I was feeling down I saw my newest neighbor, Andy, go to our mailbox. He and his wife are newly married and very sweet people. We have already met their families and were welcomed to their house warming. We had taken gifts and Rob helped Andy dig his fire pit. The note brought me to tears. They thanked us for being such wonderful neighbors and told us that we had been a blessing to them. It said that they in turned hoped to be a blessing to us. Yesterday they certainly were. Their note really lifted my spirit. It made me realize that while I cannot do big things for others anymore, I can show them friendship and make them feel welcome. I can still be a blessing to someone.
I have to redefine who I am and what my capabilities are. Thank you dear neighbors, thank you.

Friday, August 02, 2013

August Thoughts

It's hard to believe it's already August. It seems that July blew by me, most of it being spent on medical visits and problems. The last week in July I was finally able to make contact with my doctor's team who moved from U Penn to Temple University a few months earlier. I have an October appointment to see him for my pulmonary hypertension. Last week I saw my local cardiologist (dubbed Doctor Dreamy by one of my lung doctors.) He's a good guy who tries to deal with my many issues.

At times I get quite frustrated. From March 6 the day of the attack until mid July I was a slave to the gall bladder problem. First with the tube and bag and later with the open unhealed incision and pain.
I am so grateful that part is over. My incision is over ten inches long and still sore. The area around it is very tender. I have to be careful. It seems that everyone knows someone else who had a gall bladder out using the three hole method who rebounded the following day. Well, that has grown tiresome to hear. They didn't have stones the size of golf balls, or two infections in theirs, or my other health issues. I wish I didn't.

I am trying to make the most of the life I have. I live just 40 minutes from the beach  but haven't been there once this year. Over the weekend I want to get down there to just watch the ocean and maybe have a short walk on the boardwalk. Since the weather got so humid, my breathing is labored at times. I need to talk to my pulmonologist about a light weight portable unit. My last x ray report stated a lot of things I didn't want to see. I have degeneration of my spine (again caused at least in part, by the radiation.) My lungs will slowly worsen. I have to deal with it while not allowing myself to get overly stressed about it.

I love life. I am grateful for each additional day. I wish I had more money to do things I want to. Unfortunately, a large portion goes for medical. I have paid $3,400.00  out of pocket for the surgery and doctors plus all medications. One minute the glass seems half empty and the next half full. Sometimes when I think how long I've survived after cancer and heart issues, the glass overflows.
I still have hopes and dreams of things that may come. I just have to keep on keeping on.

Friday, July 12, 2013

A Birthday and a Victory

July 8th was my birthday. Usually my birthday is a huge disappointment to me. This year I am still receiving belated wishes and gifts! Got a record number of cards (some with $ in them), gift cards and chocolate dipped strawberries just this week. I was spoiled. My husband went a bit light this year as we are still paying off thousands in medical bills. I got a bluetooth for my phone. My aunt sent me money and on my big day I got a manicure and a pedicure. I was going to go out for a lunch of ice cream but the girl took a nail clipper and clipped my toe itself. Lots of blood and my surgeon told me NO more pedicures because and yes I quote "to them  you're just another toe. They don't know your medical issues or history." Oh damn, I am special, aren't I? lol I got a delicous cake but honestly my stomach is still not behaving itself. I have to eat much less than usual and be careful of what I eat. I can no longer touch milk and am now using almond or coconut milk instead. I have to eat a lot of protein so I use Kashi for breakfast cereal and nuts for snacks.
I'm getting there....even though it was slow. My wound is nearly healed and I expect to be released from the care of the wound clinic this coming Tuesday. Woot!!!!! Freeeeeedommmmmm!!!!
No more four days a week devoted to treating the wound. Because it took so long to heal, and continues to heal inside, I have some pain. It's not frequent and it's not severe. It does interfere with my sleeping. I am a stomach sleeper. Haven't been able to be on my stomach in over six months! It woulds till hurt too much so I have to sleep on my back or left side with a pillow under me. I keep waking up as I try to roll onto my stomach.

We got some new neighbors. To the left of us we have had three neighbors in ten years. The first couple had two young girls which we were so fond of. They left and a police officer and his wife and their three kids moved in. They moved about a month ago and now we have a young couple who've only been married two years. They were the sweetest couple and he's one of the nicest people I've ever met. They have two rescue dogs and Duffy is in love with one of them. We are invited to their house warming on Sunday. Sweet.

It's so humid here. Been very hot too. I don't do much right now but I am slowly recovering my momentum. I hope and pray this is the last of my surgeries.

Saturday, June 29, 2013

Busy, Busy, Busy

I have never been so busy as I have the past few weeks. On Tuesdays I see my surgeon in the wound clinic for him to monitor my progress. I had a wound vac put on for three weeks and it came home this week. Progress! The wound remains about four or so inches long and about an inch deep. It started out about eleven inches long with a depth of over 2 1/2 inches so this IS progress but it's been slow. About three days a week a visiting nurse comes to change the dressing, listen to my lungs and check my vitals.

I had learned a few weeks ago that my bottom right lung was still partially collapsed from the surgery.
This Tuesday an xray showed that the sack surrounding my lungs once again has fluid in it This is an ongoing battle that I fight. Very frustrating No matter how little salt I eat, no matter how diligent I am with the medications to remove fluid, it still accumulates. When it does I am short of breath and to walk a short distance is somewhat taxing. The solution becomes having the fluid removed via a large needle. This is not something one wants to happen. I feel I am a lung expert by now. Ignorance IS bliss when it comes to this stuff.

It's been rather hot here. I am finally starting to drive short distances. I can't lift over 5 pounds so things like grocery shopping are out of the question. My pain is less than it was but I do have pain at times. Going up the stairs has to be very slow. I think the swelling has gone down some. I am wearing my regular clothes but they sometimes don't feel comfortable.

Rob has off four days for the fourth of July. Woohoo. The bad thing is that Monday is my birthday and he can't take that day off or he won't get paid for the two holiday days. We're going to have to celebrate on Sunday. Yesterday started out to be a terrible day: FIOS went out at 8:30 a.m. That meant no phone, internet or tv as I waited for my visiting nurse to arrive at 10:30. At about ten I showered and I had to remove the dressing and packing (ugh). The nurse was running late and I just had gauze over the wound.
My sister-in-law Leslie showed up (what a wonderful surprise!) with her daughter Jamie. I have such beautiful nieces. Leslie had made me a bean salad that was so delicious, a Guy Fieri recipe. When the nurse later arrived she had a machine that was problematic and I had to go to the cardiologist for a PT (blood test). I got home and got a nice delivery of Omaha Steaks (and pork chops, chicken etc.) sent by my generous and loving cousins in Maryland. It turned out to be a great day. Our FIOS didn't come back until ll:30 last night though. How did we ever live without the internet? Thank God for cell phones.

Sunday, June 16, 2013

Gallbladder saga part two

I am now on somewhat of a schedule. Way too busy honestly for someone recuperating from surgery. On Mondays I was having my blood level checked to see if it was thin enough. On Tuesdays I see my surgeon at the wound care clinic. Thank God they numb me up with lidocaine before he touches the wound. He removes the top layer of skin that has healed and it is not fun.
I was mistaken about the parts unhealed being only an inch deep. They were 2.5 deep. Last Saturday I got the wound vac. They stuff a spongy product into the wound. It's very strange. The following Monday the visiting nurse came and felt there was way too much bleeding so she called my surgeon and told him. Since he knew I was already anemic he insisted I go to the emergency room to have my hemoglobin tested and if necessary, to have a transfusion. I had to find a driver first which I did. When I arrived I was shocked that on a Monday afternoon there were 100 people in the ER in total. Took awhile until they got me set up and blood drawn. The resident came in and said that they were afraid I had blood clots in my lungs because I was so short of breath. I was so NOT happy at that point. I pointed out that I was on IV heparin or the coumadin (closely monitored) and felt it was not possible. They wanted to do this scan which involves getting dye which is not good for your kidneys. I took out my cell and called my lung doctor. She came to the ER and basically took my side. The blood test showed that I did not need a transfusion however the chest x ray showed a partially collapsed lung on the right side. This is what was affecting my breathing. Ugh. No wonder the oxygen didn't help. Had I used the piece of breathing equipment that they gave me after surgery? No, I hadn't. So I came home that evening. On Tuesday I saw the surgeon and he said he saw some signs of healing that he had not before and was encouraged. They put the wound vac back on and I was on my merry way.

I have visiting nurses coming on Thursday and Saturday to change the packing and check my vitals. They have decided to test my blood saving me the Monday trips to do that. They lecture me on eating. I have been home from the hospital some two weeks and am down about ten pounds. I have no appetite. When I force myself to eat I get indigestion. The surgeon tells me that this will work itself out. I hope so. I am kind of housebound not being able to drive. This past week one of my friends came for a visit. That was nice but by the time I had to put lunch together for us I was shot. People don't realize how a major surgery takes such a toll on you.

Rob has been working Saturdays. This is extra hard right now because I rely on him to do so much. My mother lives 5 minutes away and is willing to drive me to an occasional doctor visit but she does nothing more. Rob gets up at 5:30 a.m. for work and after working in a warehouse all day comes home and has to prepare dinner. On weekends he vacuums, cuts the grass, etc.
I feel terrible that I can do nothing right now. I am still in a lot of pain. While the wound is healing I'm told it's still about two inches deep in four spots. My cut is diagonal and you can't move without it hurting.

Rob's in the shower right now and we are going to go for a drive somewhere to get me out of the house. Haven't been anywhere since Tuesday. Maybe get lunch somewhere. I will be so relieved when the pain eases and I know the wound has healed. The surgeon has assured me that one "problem" on the CT scan is nothing to worry about. They found a hiatal hernia which I will have to see a gastroenterologist to treat when I can drive again.

Oh for a boring life!!!!

Wednesday, June 05, 2013

The Gallbladder Saga

I knew that in late April or May my gall bladder had to be removed. I also knew that because of the size of it ("huge" according to my surgeon and the radiologist who scanned it) that it would be the old school way. No little three holes and leave the hospital that day for me. I was admitted on May 15th and began my IV blood thinner after stopping the pills. On May 17th I was wheeled down for the surgery. I woke up and found myself in SICU. Thankfully I was breathing on my own but surprised that they had my bed in an almost upright position. The nurses and care there was wonderful but I didn't do so well. My hemoglobin had dropped and although I had received two pints of plasma doing the surgery I ended up getting two more after passing out on them. They did three scans to make sure I wasn't bleeding internally, which thankfully I wasn't. I finally made it down to a regular room when they told me that I was not healing well. I have to say there were several factors that I feel were to blame: I was woken every six hours for bloodwork, I had noisy roommates and the hospital is not a quiet place. Finally after two plus weeks I was sent home. At this point I was ready to lose it. When I saw the surgeon the following week he said the wound was not healing well and he referred me to a wound care clinic and ordered a visiting nurse and daily dressing changes. He was not able to remove the staples.

Yesterday I followed up at the wound care clinic (what a marvelous place and group of people.) I won't go into the details but was so thankful they numbed me up first. Today they will be bringing something called a wound vac to put on it to help the healing. I have four places that are more than an inch deep. It's quite painful still. I am trying to move about the house throughout the day and not be a couch potato. I'm really not up to activities such as shopping. He did remove the staples yesterday. My surgeon is really wonderful. My inability to heal is caused by many factors such as anemia (after all the blood my hemoglobin is still 8), the PH I have with my lungs lowers my oxygen levels which promote healing and I have belly fat. :(

I am trying to look at this as a minor inconvenience that will pass. I hate being so helpless and having to rely on others so much. A family friend Joyce an R.N. has been wonderful coming here and helping me with dressing changes and such. I'm hoping this will only be about a four week ordeal. When it's over with I have to pursue the other issues they found on the CT scans.

Monday, April 22, 2013

Researching Ancestry

Lately I have been working on my ancestry....really on my father's side. I was fortunate that my aunt and cousin had done a spectacular job on my mother's side. They are making trips to Frederick, Maryland where many were buried and seeing headstones. Exploring my father's side has been difficult. Dad was born in Flomaton, Alabama to two people who were born in the nearby town of Brewton. Many of the local records were destroyed when during the Civil War the court house was burned down, not once but twice. We had to start out with family tales and work from there. My grandmother died about fifteen years ago (had Alzheimer's for five  years prior) and had never shown us family photos. I don't blame her, but myself for not asking many questions. She had told us that she Native American blood. I wanted to see if that were so. She had suggested numerous tribes. Her grandfather where this blood came from was rather quiet about this. He spoke the language fluently but refused to speak it or teach it to his children after he was threatened one night for speaking it. This was also the time (when he was older) that the Civil War was going on. My grandmother said he was in both Yankee and Confederate armies. This sounded impossible. What my research suggests was that he might have been a Yankee Scout. There were documents for the Confederate but not them. I was told that Yankee Scouts were paid in cash. Most could not read or write so no records were taken or kept.

According to a cousin Virgie my grandfather was a liberal before his time. He felt compassion for slaves and didn't want to support slavery. He had black folk in his house as guests which was frowned on by his neighbors. Native Americans had no prejudice and often married black mates. At that time there were no records kept of who was with what tribe. My grandfather was from South Carolina and I believe he was Cherokee. When he relocated to Alabama he was part of the Creek (or southeastern Muskogees. They shared their language with the Seminoles in Florida. He married a woman who it seems had some Ancestors who were at least part Creek. It is difficult because names were misspelled and often changed to other names: example Coatney and Courtney.

This has been so interesting and had led me to join a tribe. The tribe I joined is not federally recognized. This is in part because many of the members were not on the Dawes list. This is what the government went by. If you agreed to be relocated you were put on the list. My grandfather took his family and hid in the woods for a few years, along with others, who refused to be relocated. These people knew who they were, knew which of them had "Indian" heritage. Later the government agreed to come and take applications to recognize some of them. Many of those got federal benefits. I am not interested in that at all. To me, I just want the ancestral information. It's been a fascinating and at times frustrating journey but I have made strides. Best of all, I have met a wonderful group of people, members of the Perdido Bay Tribe. I love the people from the South. They are genuine. In the area that I live people are so materialistic. At one time I had the large house and shopped in Nordstrom's. Now I live in the small house and much of my income goes for medical bills. I am okay with that. I lost many "friends" when I couldn't keep up with them. Now my friends are people who struggle but will go online and spend a day helping me research. They will mail me a card when I am sick or call me on the phone. They keep in touch. They enrich my world and I am so grateful.

Saturday, April 20, 2013

Boston and Frustration

I am usually a peaceful person. In the past I was a pacifist for the most part. I no longer feel that way. I am angry and very frustrated. I am so angry that a wonderful man, Mr. Richard lost his 8 year old son, will have to see his young daughter deal her entire life without a leg (she was an Irish dancer), and we don't know the extent of his wife's "head injury". All this hell and so much more created by these fanatical cowards. The anger comes from this: this family came to the U.S. under the guise of needing political asylum. We granted them that and we gave them welfare. These "YOUNG MEN" (not what I would choose to call them) took a scholarship, took up room in colleges while other decent kids were denied getting in. Their mother was convicted of shoplifting. The older brother I have read had a YouTube account promoting their fanaticism. This was for years. WHY were these people given the asylum in the first place? Why were they allowed to become citizens? Why didn't the FBI take the warning from another government seriously? Oh so many questions.

I have lived and worked hard and paid taxes in this country for nearly sixty years. ENOUGH of letting so many people (from questionable areas and backgrounds) in. Shut the doors. Lady Liberty says "Give me your tired and poor" She does NOT say "give me your fanatics and zealots". We need to wake up in this country. When I was younger the thought of a terroristic act in this country was unthinkable. Since 911 it's happened over and over. We can't protect the children in our schools right now safely. We need to padlock the doors for now and get our ducks in a row. Not sure how to do that but when 170 Americans and injured and 3 killed, along with the two police officers, we need to say "ENOUGH!" I also suggest deporting the remaining family members once someone from a "political asylum" family is found to be a terrorist.

You may feel I am overreacting but if so, look at the videos again. These boys WATCHED the victims. They told their friends they hated Americans. The next time a terrorist attacks it might be someone in your family who is their victim.

Wednesday, April 10, 2013

Waiting Patiently....

I've been so busy since I've been home from the hospital. Mainly going to the hospital to have my biliary tube flushed and dressing changes and to see all the doctors who are taking care of me which include a surgeon, my pulmonary doctors, my cardiology team, infectious disease doctors and an occasional visit to the radiology place for an x ray. Last week I had to see two doctors/facilities on one day a few times. My blood thinner has been way too high because of being on antibiotics so that has required extra visits to the cardiology office and/or lab.

Overall I think I am doing well for what is happening. I have lost another 18 pounds in the past month. Fortunately, I had extra weight that I could lose. I still have a few more extra pounds that I will probably drop over the next few months. My appetite just isn't there. When I do eat it's really small portions. Sometimes I think something sounds very appealing but when it comes to eating it, I just can't. This is especially true with meat. I can manage small amounts of grilled chicken or part of a burger but that's about it. I am existing on salads and toast or small sandwiches.

My biliary tube is quite a nuisance. It's sewn into the skin of my belly and if it gets tugged it hurts. When I go weekly to the hospital for them to flush it and change the sterile dressings it's quite unpleasant. Fortunately, I have had someone to drive me each time as when I leave I have to merge onto two major highways. This would be difficult to do while in pain.

I saw the surgeon last week and he said that when he sees me again on April 23rd we will set the surgery date. He wanted to wait the full six weeks because I have had a fever that has recurred along with a wheeze in my left lung and a cough. They want me to be in good condition for the surgery. I so look forward to not having the drain or the gallbladder anymore. I cannot shower while I have this tube either. It's too vulnerable to infection. Sponge baths just don't cut it. No matter how often you have them. I know this is just an inconvenience and a few months from now I should be back to normal. I can't wait. I took care of my taxes today. Trying to get everything in order so I can relax. Each day I get more EOBS and medical bills in the mail. When it's all said and done I will owe thousands. One day at a time.

Tuesday, March 26, 2013

Home Again (Finally)

March 6th was a terrible evening for me. It began soon after I ate a dinner of chicken, green beans and potatoes. I suddenly began to feel very ill. The pressure in my chest had me convinced it was a heart attack and I told Rob that I had to get to the ER. Several hours later I learned that the heart wasn't the issue but it was a badly infected gall bladder that was blocked from two huge stones. I'm not one to take pain meds but I welcomed every shot of morphine they gave me. I was really sick and had to be given IV anti nausea medication as well. I was admitted and for days the surgeon agonized over whether to remove it or not. Firstly, I had to get off the blood thinner which they did immediately but it took 5 days to get out of my system. In the meantime, although on IV antibiotics the white count continued to climb. That made surgery a no go as they couldn't afford to spread the infection. In the end, it was decided that I needed a temporary gall bladder drain until I could have the surgery. I got that two weeks ago. It's a bit more involved than you would think as the catheter is through the liver and gall bladder and collected in a bag. The drain is in my belly and must be kept completely sterile. I have to go to the hospital once a week to have them irrigate/redress it.

My hospital stay wasn't too bad other than the constant labs and Ivs. Days 2 through 8 I lucked into a private room and day 10 I got the best hospital roommate I ever had. She made those last few days fun. Even the nurses commented they had never seen two roommates get along so well and have so much fun.

They finally let me come home day 15. The previous day I developed a cold and have been coughing ever since. I'm still on a lot of medicine. I have to see the surgeon and hopefully I can have the necessary surgery in four weeks. Of course, should the drain fail, I will need it sooner.
Keep your fingers crossed.

Saturday, March 02, 2013

Feeling Better

The last post I made was about how tired I was. I am happy to report that I have taken some triple strength, time released iron and am putting raisins in nearly everything I can, and am feeling better.
I am also eating meat, something I had rarely done in the previous six months, with the exception of chicken. I've actually eaten two burgers. My doctor put me on cholesterol medicine anyway so I am throwing caution to the wind now. Not really but I am less concerned about eating some animal fat knowing I am on the medicine.

I have begun reading again. What a joy! In the past few weeks I have devoured many books including several by Jodi Picoult. I first read Lone Wolf, then House Rules and now am reading Songs of the Humpback Whale. Yesterday I received a box of books from my Aunt Judy. She reads a lot and has many wonderful used bookstores in her area. We only have one here. It's not close and the overwhelming mustiness of the place makes me cough and irritates my lung. The prices are high and I had stopped going.
Rob also joined paperback swap online and we list things we no longer want and get points to use for books we would like to receive. You should check it out if you haven't. Amazing way to recycle and not become overwhelmed with leftover books. I cannot stand the thought of throwing away a book. Our library doesn't really want donations anymore and it's a great way to get them to someone who wants them. I was happy to learn you can mail them via media mail which is roughly $2.50 per book.

I feel I have made a graduation of sorts. I turned in my portable oxygen tank. I no longer need it. Yes, there are days where I might need oxygen doing the day and on those days I stay home anyway. I have a copay of 20% and it was costly to keep something I was no longer using. Should I decide I need it again I can have one delivered that very day. Due to the facts that I am controlling my salt intake very well, taking my medicine three times a day for the PH and being careful to avoid getting sick, I am doing better overall.
It's been a long, tough road but I feel that the ground has levelled.....I am no longer constantly climbing a hill. That makes me so happy. My cousin asked me the other day how I could do it. One day at a time I told her. On bad days I have made it one hour at a time.

We have not had a real snow this year. A few tiny inches that melted the next day. I was disappointed. The sun is shining today and I know Spring is not far away. I do love the change of seasons. I am taking out a few things today to decorate for St. Patrick's Day.

For those of you who watch Downton Abbey......
I kept hearing all the chatter about the show and I do love London and most things British so I decided I would give it a shot. I found season 1 on Netflix so signed up for that. They didn't have season 2 so I found that I could get a FREE week of HuluPlus and signed up for that. Yes, I saw an entire season in about four days!!!! Then I watched the last season on PBS within a few days. So, in some ten days I watched all three seasons. Now I see what the fuss was about. It's a great show. The ending of this season was so sad though. I kept hoping that Matthrew and Mary would get together. They finally did. I kept hoping Mary would have a baby, she finally did....and then the unspeakable. My friend Colleen told me that they showed that episode in England on Christmas!!! That was just cruel.

Well, keep calm and carry on.

Sunday, February 17, 2013

A Bit Tired

The past few months I had really been tired.....I mean so tired that when you wake up in the morning after sleeping 8 hours you think "How can I possibly still feel tired?" Everything took a lot of effort. I finally had the blood work done my cardiologist had requested several months ago and I found the source. I am very anemic. Usually my blood is about 13 (the scale goes up to 16). I have been at 8 for several months. They started me on a regimen of super duper iron pills. I take them for 30 days and have a repeat blood test done. If it's not better then I will have to go to a hemotologist for IVs of iron. Sounds like fun. You go for weeks and each treatment takes over an hour. I have been so tired that I would glady do this to feel better.

The weather here has been so crazy. They have predicted snow several times and then it basically snows an inch or two and the weather warms and it melts almost immediately. I wanted one good snow this year. It may still come.

I have been spending a lot of time on my ancestry work. I have made contact with two more family members this week. Most of them are in the Alabama/Florida area as I am working on my father's side of the family. One of the  more colorful characters I have met is Joe. He is my grandmother's brother's son. His Dad was shot and killed when he was just a year and a half old. His brother was three. His mother was only 24 at the time and kind of fell apart. Joe spent years in an orphanage until his mother came back for him. He is so loveable and my heart just breaks for the poor guy. He had three children, one son died and the other son contacts him a couple times a year. He was married a second time and had a daughter but when she was quite little his wife ran off and changed the girl's name it seems. I did a lot of searching on the computer and can't find a trace of her. Now his brother died and he is pretty much alone. I have been calling him once a week just to let him know someone cares. He seems so appreciative of that. It's good to connect with family, even distant members far away. It's what I've needed right now.

Thursday, January 31, 2013

I updated my health blog and I am going to post the same thing here as I am too tired right now to do another entry. Please bare with me while everything seems to take so much energy. Will get fixed and be back soon. 
It's been awhile since I have written in this blog. As with many other Phers I have multiple health issues. Right after Christmas I came down with an upper respiratory ailment and began running a lowgrade fever. I had to go see my lung specialist who immediately said what had been viral was now bacterial and put me on the first course of antibiotics, Levaquin. This drug is well known for knocking out pneumonia. My chest x ray did not show any pneumonia however it did show about half a litre of fluid surrounding my lungs. This is almost normal for me at this point. After a week I wasn't feeling a lot better and I went back. I was then given a huge dosage regimen of penicillin for the next week. If I wasn't feeling better by Sunday I was to let the doctor know as she would consider IV antibiotics and a hospitalization. I was feeling somewhat better and felt the chest part had really recovered. I was also using a nebulizer three times a day with a wonderful drug in it called Xopenex. It broke up the congestion. Fast forward a week or so and now I have developed the following: I am ALWAYS cold (one exception, in my bed with warm pjs on and under a down comforter designed for the chilly nights of New England. Other than that forget it! I am also seemingly compelled to eat ice. When talking with my mother, she reminds me that when my grandmother had those two symptoms she was always anemic. I went to the cardiologist today and he had the results of my bloodwork done on Monday. I can't believe it: my mother is right! I not only am anemic but he can tell I have been for some time. I have not been exercising because I simply have no energy right now to do so. I often feel light headed. I can sleep 8 hours and get up feeling very tired. He will be sending all that information over to my PCP, he thinks I might need a hematologist and shots. I hate needles but I hate this feeling even more. MY PH seems to be doing okay. I am not overly short on breath. My pulse oxymeter shows that I am rarely low now. I think the revatio is working well. One odd thing about the revatio. The other night I began to have really bad pains in my feet. My pain toleranced is quite high. I have had two open heart surgeries. (That means not only cutting through the sternum but the muscles, having ribs spread etc.) I am no stranger to pain and I want to tell you the pain was pretty bad. It felt like a sledge hammer had hit my feet several times each. I could barely stand to walk on them. I called the specialty pharmacy where I get my meds from and sure enough it is a KNOWN side effect. It lasted for a few days then went away. I asked a few PHriends and they had leg pain and/or foot pain. This is the value of knowing others who have what you have. Life goes on and I am doing okay except for the anemia. I have to get this treated and corrected. Everything is difficult when you are exhausted, my thinking is not clear and I am grumpy. Yes, I admit it, grumpy. Just ask the dog and cat. When they are whining and carrying on at 6:30 a.m. and my head is pounding it's not pretty. Hopefully my PCP (who is wonderful) will find me another doctor to help me. My cardiologist is also wonderful and such a great listener. He takes the time to listen to my complaints, answers any and all questions and is just helpful. I wish I had switched to him years earlier. Stay warm and carry on.

Monday, January 07, 2013

A New Year

It's been awhile since I have written an entry and there are many reasons for that....
Christmas had me overwhelmed with the blues this year right up until a few weeks before. At that time my spirits slowly began to lift (to which I credit the loving acts/visits of several people.) I made the decision about two weeks before to put up the tree, although I was not feeling enthusiastic. My son had the flu and was down and out for about ten days. He was not able to be around me and I had to be content to drop a few bags of things off at the door of his apartment. My breathing was problematic and shopping was difficult. I made an early decision that I would not be prepping or hosting a large meal or gathering. I received a turkey already so I decided just to cook it with minimal sides. I did bake about six batches of cookies. A few days before Christmas my doorbell rang and my thoughtful cousin sent me a lovely greenery centerpiece for the table, complete with candles. That brightened things up. Although we had the tree up we didn't do much more in the way of decorating. Fast forward to Christmas Eve. That afternoon I was feeling down and my sister and her daughters showed up at our door at 11 a.m. That was one of the best visits I have ever had with them. We had a good time and I talked about a lot of things going on that had been troubling me and now my adult nieces were giving me advice (good advice at that) and being very supportive. They encouraged me to get ready and go to my brother's that evening for his celebration and gift exchange. I did and had a wonderful time. The following morning Rob and I got up and opened our gifts. My son who was much better came over and opened his. We had a nice breakfast of Belgian waffles. I made the turkey dinner (with few sides and it was so much easier than my usual) and around four thirty my mother, sister and her "friend' came over and we had a nice visit and dessert. It was a very nice Christmas.

I saw my sister's girls and son-in-law the following day for several hours as well. Haven't spent that much time with them in a long time and it was wonderful.

A few days later I got sick. I figured I had the now wide spread flu in the area. When I began running a fever and my chest began to hurt I called my lung doctor's group. They called in an antibiotic and had me go for a chest x ray. The following week I wasn't better and I went in to see my lung doctor who said I had a bacterial infection on top of the flu. She prescribed medicines I put into my nebulizer, some stronger antibiotics and a few over the counter items. I am doing a bit better now but this flu has wiped me out.

Hopefully things will be back to normal soon. Just hoping Rob doesn't get it.
Happy New Year!!!!!