Still Here

I honestly came on today with the idea that I would delete this blog. I keep having this inner turmoil about how much I care to share and how much I want to keep private. Somedays I am ready to become a hermit, others I long for company. When I think of all the friends that I once had it's mind boggling. Where are they now? Again, some people who ignored me for years want to now be in  my life. That does not work for me. I no longer trust them. There are a few real friends who have hung in there with me but they are the exceptions.

We started to go to church again last August and I am so happy for that. The people are great and I really like it. It helps me.

My health since December has been terrible. I was hospitalized the first two weeks in February with internal bleeding. An endoscopy showed an ulcer on my esophagas. Since then I have battled with anemia and the ongoing stomach issues. A few weeks later I developed gout in  my right ankle. To walk was so very painful and the swelling was so bad I have not been able to get into any except one pair of oversized shoes. I saw four doctors for this and the last one gave me some medicine that seemed to help a bit. As though that were not enough to deal with our freezer in the refrigerator went. I had a $250 repair (had to throw out all food) and a month later when it happened again the guy said now the compressor had gone. We had to go out and buy a completely new refrigerator (and of course replace the food for a second time.)

I am fluid around my lungs again. Eventually I will have to be rehospitalized to remove it. I dread that. I have an upper respiratory something going on as well and the inhaler which keeps  me breathing causes insomnia. None of this is fun.

On the upside I am still here. Easter will be quiet here, probably with take out meals. I am not up to making big meals. My sister is expected to be here part of Sat. and part of Sun. and will probably go out to dinner with my mother. My son will come over and prepare a vegan dish of some sort. He is faithful with watching over me. I try hard to focus on the good stuff: my husband and my son. Most importantly,  I have my faith in God. I don't understand why I must go through this. I hate dragging oxygen when I go out and feeling stared at. Still, I know that there is an order to things, a plan. While I don't understand it, I have to trust Him. He will see  me through.

Winter Hiatus?

As you can see, I have not been wanting to blog anymore. Honestly, I haven't wanted to do  much else either. It has been so cold here and I haven't felt well the past month. Four trips to the doctors and three courses of antibiotics and I am not much better. I am sick of dealing with all the health issues.

It has been a great source of frustration to me that people who ignored me basically for  years seem to think they should know what is going on with my health right now. The more dire the situation seems, the more it bothers me. In the past I have always been an open book but I feel that when you don't call me, see me for years on end, you are not a real friend. I deleted Facebook because too many people were on there that were doing this. They seemed to never read status updates but would then simply ask over and over "how are you?' I lost all patience with this and have kept those who have been there for me in the loop via phone, IMs and real visits. I am curious, do you think I am being unreasonable?

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 Medscape.com)

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. :)

Disappointment

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. :)

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.

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.

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.