Monday, July 28, 2014

It's Been Awhile...

I have not posted in months... mostly because I haven't felt very well and don't want to go on and on about how yucky I feel most days. On the days I do feel good, there is just too much to do to sit down and try to write. I have no discipline, what else can I say?

The last 7 months have been chaotic. I became ill in January with an entero-cutaneous fistula opening up (again) on my belly. It was a traumatic event for me and I did think I would die from the infection. Once we got things under control, I was sent to see a nationally ranked surgeon at Penn Medical University because of the complexity of my health issues. I started with some testing and a huge dosage of on-going antibiotics. We were also trying to schedule testing procedures around weather and snow storms since it's nearly 3 hours away. Not an easy thing to do.

In the midst of all the above commotion, we received a call from DH's father, stating that Grandma was in the hospital and she has taken a turn and we needed to come right away. We literally packed bags, made arrangements for the dogs, I rescheduled appointments and finished the rest of the calls on the road as we were gone in less than 2 hours. We were in Connecticut before the sun went down and began a vigil. Gram had suffered a massive heart attack and it was also discovered that she was also suffering from stomach cancer. She spent 4 more days in the hospital and we brought her home on hospice care. She lasted just 36 hours.

While we waited for arrangements to be done, DH became ill. He came down with a migraine like he had never had. We took him to the ER where he was later shown to have a mass in his sinus cavity that needed attention as it was not there on his last ocular xrays from work. (He has to have one every time he has an MRI because he works with metal, welds, and has metal in his eyes in the past.)

We came back to PA on Tuesday after the funeral and on the way, I called and scheduled an exam with a local ENT physician in Bloomsburg. We were able to get in right away. They sent DH for a more comprehensive CT scan with a different view. It showed a large mass occupying his entire maxillary sinus cavity, cause pressure on his eye. (It also explained why DH had been walking into walks, furniture, edges of buildings... because his vision was compromised.) It needed to come out right away... and it took precedence over my procedure. DH was out of work for just about 3 months with this entire procedure. To say things weren't stressful is an understatement.

We have been busy trying to get back on track with things... getting caught up on bills and doing some of the usual spring and summer things we do. Instead of doing my usual planting of annuals for color outside... this year I planted a perennial bed at the side of the house. It has turned out rather pretty and has been fun for both of us as it's a butterfly and bee garden. We have lots of bees, butterflies, birds and dragonflies. The feeders are well used as is the bird bath. I have enjoyed sitting out in the evening to watch the birds feed and listen to the all the chatter as they call to each other.

I have added 2 humming bird feeders to our little patio area and that has been a great source of joy for me as we have 3 that feed with us, 2 females and 1 male. The feeders are less than 8 feet away and we get a close up view... they are not afraid to feed while we sit right there.

That is pretty much my life these days. I still need to get back to Penn Medicine and restart my work ups. I do need to have surgery to remove the fistula and undergo a small bowel resect. It is not easy to think about, and it does need to be done in the next few months before the weather gets bad again. DH doesn't have much time away to be with me... he had to use all of his vacation for his Grams illness and funeral. His company is rather difficult to work with regarding family issues and FMLA is carefully watched. I hesitate to do too much... if I do this surgery, I think I will have him take me down for the day of the procedure and not worry about seeing me until I transfer to a rehab unit and then come home.

Time for me to go and get a few things accomplished today. Moving very slowly!

Thanks for stopping by and reading...
Be Blessed!   ~Suzanne

Sunday, May 11, 2014

This Spring Season of Time

Again, here I sit... stating the same thing... that it's been awhile since I last blogged. I have had intentions of blogging, it's just that with my fibromyalgia and my thyroid issues that cause me to have a lapse in short term memory from time to time. I've had that and brain fog a lot lately. We had a visitor stop in and have dinner with us. I made a meatloaf for our supper and he watched as I assembled it. Once it was served and I tasted it, I knew I had left an ingredient out. I couldn't remember what it was that I missed... and our friend began to make guesses on what it was... and DH told him, it wasn't that I knew and couldn't think of it, it was that I really didn't remember!

The last few months have been full of issues. We were called at the beginning of March the DH's Grandmother was gravely ill and hospitalized, and we needed to come immediately. We cleared schedules, made arrangements for pets, rearranged all my medical stuff, packed bags and readied the house for our departure. We were on the road within 2 hours. I managed to call the bank, the post office, the university, and anyone else who needed to know we were is crisis mode.

Our stay in Connecticut ended up being 10 days long. We had expected things were at a more advanced stage than they were and it was revealed that we were at the beginning of end stages. That takes around 4-5 days and that is what we endured. We had found a small inn 10 minutes from the hospital and the family home to stay at... but really didn't want to incur the expense. We did anyway and made the best of it. It was a very stress filled time with DH's female siblings. His brother was also in and out of town and proved to be a huge ally in all the turmoil. Things were said, some very rude and blunt, and DH and I quietly bowed out and stayed on the edge of things to avoid anymore unpleasantness.

The day before our last day there... DH had developed a migraine. I had done all I could to nip it before it became out of control. It did a very quick crescendo that DH said was the worst headache of his life. I The car became lodged between a rut and an ice dam and before I knew what happened, I went lurching backwards and took out the back fence and landed at the back edge of an antique stone wall. We ended up leaving the car where it was and DH's uncle took us to the hospital. After several hours of tests, it was ruled to indeed be a migraine. But it also revealed that DH had a very large growth in his head that needed further examination. We took the test results with us and headed back to the hotel to get some sleep.

The next morning, we packed up our broken up car with 10 days worth of laundry and life... attended his grandmothers funeral and luncheon and then headed back to our home. On the way, I called an ENT practice associated with another doctor's group we use and made an appointment for the next day. DH had an exam, was sent for further CT scan studies and we were scheduled to see the doctor in a week. DH headed back to work and was met head on by a true crap-storm led by the head of HR for being out for 10 days. They ended up having to involve his emergency vacation time and then 2 days of bereavement to cover all of the time we were gone. (She wasn't too happy about it and decided that he should pay... by taking a simple over site of not cleaning off a machine that he had scribbled on with glue from his finger... and had him walked out. After 2 weeks, she deemed that he was on suspension, thus voiding out his unemployment.

But let's back up to the doctor appointment... just after that doctor appointment and Ms. HR had DH walked out of the plant, she had the nerve to state that he was a danger to himself and/or others because of his "distracted state of bereavement". So she sent he home... which would have either put him on unemployment or on short term disability. Both of which ended up being denied because of Ms. HR. ... We did go back to see the doctor and he scheduled DH for surgery as he diagnosed a very large growth in the maxillary sinus cavity  and had to come out as it was large than a golf ball and filled over 90% of that cavity.

I will fast forward to the surgery being successful. The growth was determined to be a benign cyst. DH is still out of work and will be out a full 60 days before he goes back. Actually, it translates to him not working for most of the March, all of April and almost all of May. If we had not had all of the expenses incurred with going to Connecticut for 10 days, we'd likely be just fine. Things are pretty lean around here, meaning we've sold or are selling all that we can... and have cashed in some other things. We have a few projects we'd like to tackle... don't want to spend the funds right now. I sprained my ankle and foot while in Connecticut, and walked on it for 6 weeks. I finally went to see my Orthopaedic surgeon and he diagnosed it as a level 2 sprain "now" and put me in an air cast. It's been tough to remember to wear it, it's slowed me down somewhat more than usual. Thus, we have no garden area set up, we have no flowers acquired for the sitting area or any beds... nothing is hanging and no foo-foo has been placed as of yet.

If I have left anything out of great importance, I will try and update it. Please, I request your prayers for us... and I also humbly request prayer for a dear friend whose husband (and best friend) has just been diagnosed with pancreatic cancer... and they think it's been caught early enough.
Thank you for reading... please have a blessed day!


Wednesday, March 19, 2014

The Seemingly Never Ending Saga...

I have been dealing with many things as of late... Health issues, family issues and a death in the family. I have been dealing with pre-operative testing and driving back and forth from PENN medicine in Philly. Along with that... We have been trying juggle trips between snow storms and staying on track with DH's work schedule and it not having a negative impact on his attendance and our wallet. It's not easy and we are very thankful for FMLA and what it allows.

Family issues are just that... Family stuff and expectations along with good manners. It is hurtful to me when I go to great trouble to send generous gifts and my phone never rings to acknowledge that gift. Not just from the kiddos it was sent to, but also their parents. I can't be generous like that too often and won't be sending gifts like that again.

We received a call just over 2 weeks ago that DH's grandmother was hospitalized and wasn't going to last much longer. We hastily made arrangements for our pups, packed bags, and rearranged calendars and appointments, held mail, and called the bank while on the road. We were in DH's hometown for a total of 10 days, staying in a small inn just south of there. We ate all of our meals out except for one, and purchased groceries and supplies for all those staying at his father's house. We bought meals for people staying at the hospital and lent support to his 2 sisters who decided to stay at the hospital for the duration. To say it was stressful is really moot now. It is always that way in these types of situations.

When DH's gram began to transition, she was moved back home on hospice. DH was able to accompany her on her last journey to her home and comfort her and hold her hand. We stayed close by and tried to be supportive as each person had time with her to say good bye. On what was to be her last night with us, Gram's daughter brought down Gram's jewelry box. We were instructed to go through it and take pieces that would mean something to each of us. I had a small pile of things and had been making certain anything that I saw that was valuable was given to DH's aunt. I ended up taking a small gold bracelet for DH's daughter, a couple small lapel pins, and 2 costume sliding hearts. Nothing of any real value, just nice looking pieces that I would wear.

Later that night, we got the call that Gram had passed and did we want to come back before they took her. We made the journey quickly... Went in to see her. As we went into the kitchen after, I was subjected to what brings the worst out in people at times like that. DH's sister said ominously that she wanted to talk to me... And tried to push DH out of the way and told him to go away. He stood his ground and stayed to witness the travesty that unfolded... She attacked me about what jewelry I had taken, that it may be of great value and it better not be sold. (I quietly replied, "first wife, yes... Second wife, no.") She then went on to attack me about not being invited to our wedding... And I replied, "we've been down this road." DH's cousin and his aunt were sitting right there... And they both stopped her from continuing on. I was mortified, embarrassed and upset at being accosted like that. I walked away to the other side of the room to get my coat and DH's father was standing there. He saw that I was upset and asked me what was wrong... I think I muttered something to the effect that I didn't fit into his family and Imturned and went out the back door with DH right behind me. 

His father came out the door and proceeded to scream at me about my attitude. I asked him to stop yelling and he continued... So I walked to the car and got in... Not saying another word. I had DH drive me to the inn. I went in and retrieved the small box of jewelry and told him to take it back to his aunt.

We didn't really speak to his father or his 2 sisters for the duration of our time there. We were relegated to sitting in the 4th row of chairs... And it was very awkward at then luncheon after. DH and I are really speechless at the actions of certain members of his family. It was a sad time only increased by the ugliness of people who were grieving. We have to return in April for the burial... I hope I can take it.

Sunday, February 16, 2014

The Sunday Seven...

I have not blogged in quite a long time... because I have been dealing with some health issues. Things that are on-going and some things that are coming up. Here is a list of seven things that are going on or have gone on in the last few weeks! Lists are an easy thing for me to do, so here we go!

1.  We had so much snow this week that my DH's work actually closed for the first time in years!

2. We have so much plowed snow in our yard that the piles are over 8 feet high. Those won't melt away until late April.

3. I made some awesome things in the kitchen recently... homemade macaroni salad, Korean beef, Potato soup, thick cut pan fried ham steaks, just to name a few things!

4. I see my rheumatologist this week... I think she is going to be very surprised to see just how far R/A has progressed in my hands. All 5 fingers and my wrist on the left and 4 of my 5 fingers and wrist on the right all show signs of inflammation and with redness and nodules. I have to be very careful with water in the kitchen now as only light warm water feels ok... hot water is all very hot and very cold water really hurts too.

5. I have been going through my personal closet and so far I have boxed up over 20 pairs of shoes and decided to part with the majority of my handbags. Many of which are bags costing over $100 - $300. I have a former co-worker than is willing to take all of this off my hands. She is a lucky girl!

6. I have been working really hard at trying to get my house back under control from my canning season to now... Yeah, it's been that long since I have deeply cleaned because I over-did it so much at the end of Summer and into the Fall. My Fibromyalgia was diagnosed in October and my body aches and fatigue have been off the charts. My endo changed my Synthroid dosage to 225 mcg from 250 mcg... that has made a huge difference in my energy level to not be so "suppressed."

7. Did I tell you that one of the silliest things to ever happen to me was a few weeks ago. I had taken my usual dose of Ambien and also some pain medicine. I fell asleep at the very edge of my bed. I actually ended up rolling out of bed and hitting my head on the night stand (which is solid maple) and landing on the step to get into bed and then the floor. My husband scooped me up and took me to the ER to have my head x-rayed and to make sure I didn't crack a rib. I had a huge goose egg and my left ear was purple. My goose egg has gone down and my ear is almost back to normal... but for almost 3 weeks, I couldn't touch the left side of my head. (Only me!)

Thanks for reading... have a Blessed Day!

Tuesday, December 31, 2013

Cozying Up

Yesterday was a long day and a long night. My DH worked a double shift and I could not manage to go to sleep alone in the house last night. (I think I was afraid I was "nod out" and not hear my alarm and forget to go pick him up. He insisted that I keep the car in case anything happened... like a 20 pound black and white dog running off into the night.

I did have a little bit of craziness last night. I reconnected with a girl friend from high school. We met on our freshman year and were very close for awhile. There was another girl that rode our bus and decided she wasn't going to let me have Mz. T as my friend. She drove a huge wedge between us and as I moved at the end of my sophomore year, we lost touch. I had thought of her over the years as her family had the adjoining acreage next to my Aunt Carolyn and Uncle Chet's 5 acre farmette. They moved at the end of the school year as well... to Montana.

We had reconnected back in the 90's somehow.... I don 't really remember. Anyway... along came social media and she friended me. We have briefly messaged each other and read and comment on posts. Last night I sat down, picked up the phone and dialed her up. We talked non-stop for 4 hours! It was wonderful, insightful, introspective and a great source of healing and reconnection. It was like when we were young girls, sitting and talking about life and our dreams.

Ms. T has struggled with health issues and suffers with some of the same maladies that I have, and she has other issues with back surgeries and fighting for mobility. Nobody said getting old was for sissies, that is for certain! She is also dealing with her mother having dementia and I was able to give her some insight and comfort in dealing with that issue.

Because of the phone call, I was not able to relax and sleep like I had hoped. I watched a couple of things on Net*flix.... and stayed awake. I went to get DH early, stopping to get him juice and breakfast. We cozied up to relax and snooze. I napped a couple of hours and DH is still sleeping. I will need to wake him soon so he will sleep tonight. The wind in howling and we are getting snow. I took Punky outside at noon and the cold was too much for her. She started to crash after she came back in, trying to warm up. I gave her honey and some snacks and food to bring her back to recognizing me, poor little dear.

As we ring the old year out and the new year in... we don't make resolutions in this household. We do discuss what we want to change and try to make a plan to carry that out. I am glad this year is over... glad to see some of my health issues improve and continue to work on others that need to improve. We are grateful to be able to have spent Grandma Jeanne's 95th birthday with her, and reconnect with DH's daughters. I am grateful for the wonderful husband and my Punky and Cooper dogs and how they are my essential spirit.

Happy New Year... and thanks for reading!

Sunday, December 29, 2013

What I Have Been Dealing With...

Life in the last several months has drastically changed for me. Over a year ago, at the request of my husband, I resigned from my position with a leading Fire Protection company, handling 1.5 million dollars on a monthly basis for a Florida market. It was stressful and my former peer and now supervisor was making my life miserable. The toll on my body was great and I was in a very unhealthy situation.

I worked with several doctors to get myself into a healthier place. During the last 6 months, I have had increased pain and mobility issues and a "so called cyst" that would not heal. Since then, I have had another surgery on the cyst, and the surgeon discovered that it was a fistula stemming from my very first cancer surgery in 1988. The doctors had placed several drains in my lower abdomen and stitched them in place, and one stitch was pulled through my mid-line fascia, causing years of drainage and issues that went undiagnosed. My surgeon was quite surprised when I told him of the date of the surgery and said I would always be remembered as one of the more surprising surgeries of his career.

As that surgery was healing, I was having issues with my joints and pain and stiffness in my hands. I went to see my husbands rheumatologist and was diagnosed with fibromyalgia and rheumatoid arthritis. I have it in my fingers on my left hand and recently began symptoms in a couple of fingers in my right hand. I also have it in my right foot with most of my toes... and of course fibromyalgia also presents across the ball of your foot inside and out. Let's just say it's hard to keep slippers on my feet when I am going up and down stairs. I have to rely on my husband to help me do shopping as of late, as I can't drive very well.

My husband has not been home very much this year. He clocked a total of 4000 (approximately) hours of work this year. The standard 40 hour work week totals 2080 per year. So, yeah, he's never here! We did see each other on Christmas eve and on Christmas Day. He should be off on New Years eve and New Years Day... so we will likely go see a movie and have dinner somewhere... depending on the weather.

I had a rough day the day after Christmas. I hadn't heard from my family on Christmas... from anyone. My husband went to work and by the evening, I was dealing with the crazy emotions of cancer and all that it has robbed of me through the years. The one thing that I have always wanted was to be a mother and a grandmother. Knowing that the rest of my family were busy with their own families and grand children  was very keening on my heart. (I know that I should be grateful for just having my life, but cancer has twice robbed me of things that I love.) It makes me angry to feel those losses at this time of year. Before I was married, I managed to stay busy... but it's very different now as we have moved so far from dear friends. I have a couple of dear friends here, but I have issues with intruding upon family time.

I am also dealing with the loss of a couple of friends... one from years ago and one who was my best friend at work. Since I have left, that friend has never picked up the phone and called me. I have called her, met her for dinner a few times, but it's always been me to make the contact. I don't know what I did... all I know is that it's hard for me to keep being the one who calls.

It's a strange phase of life for me... I am also facing a new doctor's appointment this year with a hematologist to discuss my new diagnosis of having a genetic mutation that is causing my to have very elevated hemocysteine levels. A very serious issue, along with having aortic stenosis and an aortic root aneurysm. I just had an aortic mri, which shows I am maintaining my moderate status.
It's always something.

That's a little bit of what I am dealing with... I'm trying not to be overwhelmed!
Thank you for reading!
Happy New Year!

Monday, December 23, 2013

Holiday Time!

I have been busy preparing for Christmas for weeks now. But somewhere in all the busy-ness, I seemed to lose track of the days... I so need an extra one! Both DH and I thought we had an extra day. Yikes, there is still a bunch to do!

I did lose some time having an arthritic flare and DH's schedule going to 12 hours a day, 7 days a week. I have times where I need his assistance with things. He can also become quite a mess maker when he works so much and I find that I constantly have to clean behind him. And then there are the things I cannot do on my own, either because of health issues now or issues from past health issues... making it really all about my health. Which, it has improved from last year to this year.

That being said, I do have to deal with Fibromyalgia and the ever present back pain that radiates to my arms and down my legs. I also have Rheumatoid Arthritis in my hands and in my right foot. It makes it difficult to do certain things like load and unload the dishwasher and washing pots and pans. I drop a lot of stuff! I can no longer be barefoot in the kitchen to protect my feet. It took a while for me to adjust to as I love being barefooted. I have trouble with holding on to most anything, I have trouble with my right toes... my second and third toes are affected and sometimes I cannot curl my toes... and it makes it difficult to keep my slippers on my feet!

I'd love to be able to share my Christmas tree this year but my abilities to upload pictures is giving me trouble. My laptop has had issues ever since we bought it and my husband did have to replace the motherboard on it once. My power cord has become cracked and it's been taped up. My DH took my entire computer apart and fixed a couple of things... it was out of commission for about 2 weeks. I had to use his laptop for a few things, but mostly used my I-pad.

So, dealing with Fibro and R/A... has given me lots of fatigue and a ton of brain fog! I don't always remember things I should... forgetting to pay a bill or forgetting just how much money I've spent. DH loves me inspite of my screw ups! Time to go get busy in the kitchen again... making peppermint bark, cookies and dessert for our little gathering at my friend Janey's house! So excited to give her her Christmas gifts... both of which I made for her.

Thank you for reading... Marry Christmas!