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What I learned from Winter Storm Nemo….
Heart of snow for Bunny
So a snowstorm ripped through our area. I dreaded it because I’ve hated snow and all that is associated with it since school snow days became a thing of the past.
The weatherman talked about doom and gloom. They were predicting a foot of snow with high winds that could cause power outages. That’s all I needed to hear. The panic started to settle in. I dreaded shoveling all that snow. I started fearing a power outage with no light and heat on a snowy night. I was afraid to be alone without Mark because he was the one who always balanced me.
I became a wimp. I left the office early once the snow started to stick on the ground. I always told people that I don’t drive in snow, but the reality of it all is that I did. I can’t remember the last time I left early due to snow. I just couldn’t stay at the office. I knew that I couldn’t take chances because if something happened to me there was no one left to take care of Belle.
I stressed all night over the snow falling. I worried about power outages and made sure I had flashlights around. I made sure that my iPad and cell phone were charged.
When I went to bed about midnight, it was a winter wonderland outside. The snow was falling heavily, and I went to bed fearing the worst, and feeling lonely and scared.
I woke at 7:00 AM. I figured that Belle would need to pee. I took her out, and there it was. A white winter wonderland. I stuck my ruler in the snow on the deck. The measure was 8-1/2 inches. I didn’t want to face it, so I went back to bed, dreading the shoveling that was going to have to be done.
I stayed in bed for as long as I could. Finally about noon, I went out to battle the white shit. I’d hoped that some teenager would knock on my door to make a few bucks shoveling out my driveway. No kids knocked. My next door neighbor didn’t come over, offering to help. In fact, it looked like he wasn’t even out yet because his snow was still virginal.
I shoveled the driveway and the sidewalk. I cleaned off my car and put it into the garage. It took me about an hour. I missed the fun that Mark and I would have when we shovel. We’d throw snowballs at each other. We’d make snow angels. We would chase Belle around the yard. Today I had none of that. It was a harsh reality that this is how it is going to be for me.
But I learned something from Winter Storm Nemo. I learned that:
- I can shovel my driveway and sidewalk
- I am strong enough to fight my own fears of storms
- I can make a mean homemade French Onion Soup
- Belle likes snow even if her Daddy is no longer physically with us
I’m not liking my new way of life. It’s going to take time to adjust and cope. It’s going to take a lot of grieving to get past this. I am going to miss Mark forever. But so far, in spite of daily (sometimes almost constant) tears, I am learning that I can be strong when I need to be. I have survived 3 1/2 weeks of being a widow. I have hated everything single minute of it, but I am surviving.
I am determined to push forward and come out a stronger and better person. I will need help. I won’t always be capable of asking for it. I will have my share of tears and pain and hurt, but I am determined to come out of this on the other side in one piece. I know I have to do it because that is what Mark would have wanted for me.
I love you Bunny… and I miss you tons!
16 days since my life changed…
It’s all a big blur, but yet so real that it is frightening, overwhelming, and emotionally draining.
My brother Jeff came out the morning after Mark passed away. He made all the arrangements for Mark’s cremation and Memorial Service. He made me a spreadsheet of all the stuff he thought I would need as well as a list of things that I needed to do. He contacted people and companies. He answered the phone when I didn’t feel like talking to anyone. Having him here was exactly what I needed (and wanted).
You don’t have to be blood to be family!
Me and my brother Jeff
For those of you who don’t know, Jeff and I are not biological siblings. I was adopted as an infant, and Jeff was the biological son of my adoptive parents. Sure, we fought as children, but when we became teenagers, he developed that protective brother thing. He’s always been there for me anytime I ever needed him, and he has always treated me like a treasured sister. I am extremely lucky to have him for my brother.
A lot of friends came by the first week to visit, and it was quite welcome. I did get to see some friends who I hadn’t seen in MANY years! It was nice to see them, but unfortunately it had to be under such poor circumstances.
After Jeff went back, I was left to fend for myself. the first week was difficult and lonely, but the shock had not worn off. I went through the motions of life, and I did get a lot of the calls made and things done that were on my list.
During that first week, I also took care of some personal stuff like going to the doctor and dentist, and taking my sweet Goldendoodle, Belle, to the vet for her rabies shot and check up.
The Memorial Service was held on January 26, 2013, and it was bittersweet. I was able to see my friends, and all of the friends from Mark’s school that I got to know throughout the years. I also met some new people from the school he was currently working at.
The turnout was very nice. We had about 60 people who stayed for the meal, and close to 70 in all. The service was beautifully done by a close friend who is a Life Cycle Celebrant. When the person doing the service knows the deceased, it makes all the difference. She did a wonderful job, and I am forever grateful for her generosity. Mark always liked her, and I was happy that she offered to help us. Mark would have been proud. She has shown what a good friend she is, and I am grateful for her and our friendship.
We had the Memorial Service at an Italian Restaurant called Pulcinelli’s in Parlin, NJ. It was catered by Lisa’s Pizza, and all of the food was just wonderful The cake was a yellow cake with bananas and strawberries in the filling, which was Mark’s favorite cake. He used to always get it for baked for birthdays (especially mine because he knew I loved it as well). The day was a wonderful way to honor my beautiful and loving husband.
Going back to work at the ten-day mark was a blessing and a curse. It was good to get into a routine, but there were still so many phone calls to make and things to do. It was also hard to concentrate for long periods of time. My mind would wander and then the sadness would hit, and I’d find myself fighting back tears.
Going home in the evening was tough. I was used to being alone a lot because Mark had dialysis three nights a week, and he wouldn’t get home until nearly 8:30 PM. But I knew this was different, and it was hard to cope with the loneliness. Some nights were easier than others. A couple of nights I talked to friends on the phone, and that helped me. Just having a conversation with someone was a relief from the emptiness. It didn’t even have to be a long phone call, just 10-15 minutes was enough to make me feel like I was not alone.
I have been receiving cards in the mail just about every day. I have read every single one. I still have not been able to read the cards that Mark’s students made for me, and I haven’t been able to read the memory books that we put on the tables at the Memorial. I’m not sure when I will be able to read them. It’s just too painful now.
I have been keeping a list of the cards and stuff that I’ve received. I know that I should send thank you cards, but damn, this is so painful that I don’t even know when I will be able to write them out. It would be like stabbing myself in the heart with each card I would write.
Today I made my first trip to the grocery store. I couldn’t go to the store that we normally went to because I didn’t want to deal with the memories. Actually every where I go has memories. Driving down the highway reminds me of Mark. I drive along and I see our favorite restaurant or the McDonald’s where I’d get my McRib. I pass the Dunkin’ Donuts that Mark would always get my coffee and “flavor of the season” donut. I guess the bottom line is that being out hurts and staying in the house hurts.
I’m trying to be more social now. I used to be a pretty social person, but it just about stopped when Mark was diagnosed with kidney failure. His energy level was never good, so the fatigue kept us in the house a lot. Sometimes I hated being home all the time, but for the most part, I simply changed my thinking, and I grew to enjoy our quiet times together.
Tomorrow I am going out with a friend for a few hours. She cares for horses, and she invited me to go. I will admit that I am afraid of horses (they are HUGE!) but I will step out of my comfort zone, and I will try to join the world of the living. On Tuesday I have plans to go out with another friend. He and I are going to do dinner at Jose Tejas in Woodbridge. It’s been a long time since I’ve seen him. We always talked about getting together, but it never happened. Now it can. I can go back to being the social person that I used to be before I stepped into my “caregiver booth”.
I am trying to keep busy and find myself again, but is not easy. I know that Mark would not want me to sit in the house day after day, night after night and just cry. He’d want me to be happy. I don’t know when happy will come, but I can at least try to keep moving.
1:30 am….There is a bear in my bed!
I forgot to mention that Mark’s bipap machine for his sleep apnea is sick! The company is coming tomorrow afternoon to replace it.
Sadly though, Mask is snorting, snarfing, and snorting so loud that I had to turn up the music! But even that didn’t down out the noise!
When Mark holds his breathe for too long, I nudge him in the ribs to make him breathe! Welcome to my world!
The Three Year “Anniversary” is upon us…
It’s hard to believe it’s been three years since Dr. Luca DeSimone told us that Mark needed to check himself into the hospital for emergency dialysis. No one told us how difficult this was really going to be and all the obstacles we were going to have to deal with.
Come to think of it, we were told VERY little about what this diagnosis meant for us. No one, not the doctors, nurses, dialysis technicians, or surgeons told us anything about how this was going to change our lives. I’m not sure if it is because every patient/person is different and reacts to and deals with things in a different manner. It could be that the doctors only treat the patient, and most have never had a dialysis session or had a graft inserted into an arm. Most of the doctors have never been married to (or lived with) a person who has kidney failure. Maybe the clinical staff is simply ignorant of what it is really like to live with kidney failure. It’s one thing to treat the condition or know someone who has it, but it is a completely different story when you suffer through it every day of your life.
The last three years have been quite tough for us. Mark has personally dealt with graft surgeries, clotted grafts, major illnesses, dialysis treatments three times a week, doctor visits, and the general feeling of illness just about every day.
I’ve tried to keep our life running as normal as I possibly can. It’s been an uphill battle, that is for sure. I’ve picked up the slack for most of the household chores (mainly because Mark works and has his treatments to deal with…. and because his fatigue makes his energy level very low). Admittedly, it’s often difficult to deal with it all, and still manage to have some semblance of normalcy in my life.
The added responsibilities are not the major issue for me. It is the constant anxiety, worry, and fear that consumes me more than it doesn’t. My brain is on overload most of the time. I juggle appointments for the family, mostly Mark’s doctor visits. Too often I have to completely rearrange my schedule for an emergency appointment. While I am lucky that my schedule and work are flexible, it definitely gets exhausting and tiresome really quickly.
My friend asked me, “how do you deal with that every day?” I didn’t have an answer for him. It is not easy. It is not fun. I’ve often thought of just running away from my life and not looking back. I think that’s a normal reaction, and having spoken with other people who are in my shoes, I am not alone. Thank goodness for that! I’d hate to think I was a horrible person!
This same friend made a comment to me about how hard it must be to live with someone who has a health condition like kidney failure. I’m not sure it’s any different that someone dealing with any other condition such as cancer, Multiple Sclerosis, or Alzheimer’s Disease. In all cases, the future is fragile, doctor visits are the norm, and stress and depression can rear its ugly head.
I still feel that Mark got the short end of the stick in this whole situation. He has to deal with the needles in his arms, the fatigue, and all of the other issues that go along with kidney failure. He feels physically crappy just about every day, but yet he pushes through it for the most part.
On the other hand, while I am relatively healthy, the stress of having a sick husband definitely wears on me. I suffer from erratic sleep patterns (sometimes severe insomnia and other times I just sleep all the time, taking naps at the end of the work day). Some days the stress and anxiety affect me physically. I’ve battled intestinal issues, fatigue, headaches, body aches, and mood swings. It can be hell! I try very hard not to take it out on Mark. This whole situation is no picnic for him either.
I have to admit that sometimes I find it hard not to blame him for all of this. His lifestyle helped to create this situation. He had uncontrolled diabetes for quite a few years because he was in denial and just didn’t want to believe he was diabetic. His weight has been a contributing factor in all of this. He’s always been overweight, and when he goes on a diet, he does a very unhealthy crash diet. His blood pressure has always been high. Even on medication, his pressure was always higher than what is considered normal. His doctors never seemed concerned, so Mark was not concerned.
All three of these lifestyle issues, obesity, high blood pressure, and diabetes, are the biggest contributors to Chronic Kidney Disease. Since he’s lived with these three factors for most of his adult life and never did anything to change them, how can I not believe that he is, at least partially, to blame for his condition?
Of course, he is in denial, and he refuses to believe any of this is his fault. I beg to differ. I’m not perfect, nor am I free of lifestyle choices that contribute to disease, but I do go to my doctor for regular check ups and blood work, and I follow her recommendations, for the most part.
As a dialysis patient, Mark gets a support team to help him through all of this. He has a nephrologist, doctors, nurses and technicians, dietitian, and social worker. The team does their best to keep him on track, keep him motivated, and keep him as healthy as possible.
As a family member of a dialysis patient, I haven’t had the support that I could use to deal with all of this. No one really talks to the family members. If I didn’t go with Mark to his doctor appointments and ask to see his “Dialysis Report Card”, I would be sitting in the dark wondering what the heck was going on.
I remember saying this very same thing when Mark went for his first dialysis treatment at Davita in Perth Amboy. No one let me know what was going on. I just sat in the waiting room for nearly five hours, wondering and worrying. It would have been nice to have someone come out to talk to me and let me know what was going on.
Three years later, I still feel that the family members are neglected. It’s tough because sometimes I feel totally alone, like no one understands what I am going through and dealing with. I could go on and on about this subject, but I won’t. I don’t think the “average Joe” would understand unless he/she has gone or is going through a situation like this.
While I do not suffer from the disease, I still have to live with it every damn day. I can’t ever say this situation is a good one. Some days it’s just hell. But as I have learned, life is not guaranteed to anyone. Actually it is pretty fragile, and in any given moment, it’s gone.
In the big scope of things, I am acutely aware that things could always be worse. I don’t need to go into details, because I KNOW everyone gets that concept. Yet, at the very same time, things can ALWAYS be better.
I’m waiting for the better. I’m hoping for the better. If I have faith, the better days will come, right?
Finally a REALLY good report card!
Yep, it’s me. I’ve been absent again. I know, I always say I will do better, but it just doesn’t happen. I have so much that I want to write, but time is short. Life just always seems to get in the way, and before I know it, time has passed, and I just wonder where it went.
So here’s the latest on our life with Kidney Failure. Mark just got his latest report card. He very willingly HANDED it to me (which is not something that he often does — even when I ask him).
This Report Card was very good, and I am quite proud of Mark for his efforts because I KNOW that this is not easy.
Here’s the scoop….
Albumin was 4.1 (it should be 4.0 or higher)
Hemoglobin was 10.7 (still slightly below normal, but it has been consistently rising from 10.2 to 10.5 and now up again)
Calcium Correct was 9.6 (it should be in the range of 8.4 – 10.2)
Phosphorus (always a problem for him) was 5.4 (should be 3.0 to 5.5). It’s finally in normal range!! Woo hoo!
PTH Intact was 320 (the normal range is 150 – 600)
Potassium was 5.3 (the normal range is 3.5 to 5.5)
URR (measurement of how well the blood is being cleaned) was 66%. It should be above 65%. A little on the low side, but he’s never been extremely high, and the doctor seems pleased with this.
Cholesterol was 127 (the normal range is 100 – 200)
Glucose was 124 (the goal is 80 – 180)
HGB A1C (measure the average blood sugars for the past 2-3 months) was 6.2 (which is what it’s been for the past few months).
And finally………..
Fluid Control was 3.8 kg (should be below 4kg) so his monthly average is actually GOOD!!
I am pleased with this. He obviously was too since he gave me the report willingly. But it’s all good.
Now if we can just get the weight of him. He’s still at 146 kg (which converts to about 321 pounds). That gives him a BMI of 43.50. He needs to be 30 or below for a transplant. They gave him some leeway (at 35 BMI) but he needs to lose about 75 – 80 pounds. I know it’s hard. But he needs to do it.
He decided to take sick leave for the rest of the year. He’s going to concentrate on rest, exercise, and healthy eating. He wants to get on the treadmill, get more sleep (5-6 hours a night has not been working for him), and eat at consistent times with good solid meals. I have no problem with this. Nothing will really change for us. Except that he might get healthier…. and he is home in the evenings (because he’s been requesting an earlier dialysis shift). If this is what he feels he needs, that is fine with me.
I just want him to get the weight off so that when his time comes for a call for a kidney transplant, he is healthy and ready to go.
He just went to see his nephrologist (Dr. Ossama Hozayen) for a checkup and all was well. He goes again in a month. He also saw Dr. Mona Awad while he was there. She was the doctor who recommended the sleep study and ultimately the BiPAP machine.
And speaking of the BiPAP machine, Mark has FINALLY agreed that it is helping him. He says that when he uses it, he does not wake with a headache or a feeling of nausea. I also noticed that he sleeps very peacefully. He doesn’t “kick” and move his legs like he used to do. He also doesn’t wake up gasping for air. He sleeps peacefully and quietly. The machine makes no noise at all. Sometimes I hear the air rushing through the hose, but most times I don’t.
My biggest problem is that when Mark is facing me, the output of air often blows on me. It will dry out my eyes or give me an earache. Sometimes I wake with a stiff neck but I’ve adapted a fix. I put up a barrier between the hose and me. It’s usually a small stuffed bunny, and then I have no problem! 🙂
We also had another issue arise. It’s not really health related, but more of an insurance matter. When Mark was first diagnosed with kidney failure, his insurance company required he pay a $35 copay each time he had a treatment. That was about $420 a month. Davita suggested that he get Medicare. We signed up, and the cost was about $125 per month (which is a sliding scale based on our income). Not a problem.
When his employer switched health insurance companies, the new company did NOT require the $35 copay for each treatment. Mark was not required for to pay anything. Only his doctor visits were $5 and his prescriptions were $5, $10 or $15. We decided that there was no need to continue the medicare, so we cancelled it.
Now after nearly 33 months (GULP!!) of dialysis, the insurance company requires that he obtain medicare as his primary insurance for his ESRD procedures (which include dialysis and transplant). We were worried about the rise in cost. We were told when we cancelled it that when/if we needed to enroll, the price would be higher.
When Mark called Medicare, were told that the monthly cost would be around $100 (which is less than last time). The representative told Mark that it was due to lower costs in medicare by the Obama Administration. Well that was fine with us!!!
We are now getting close to the three year mark of kidney failure and dialysis. It’s hard to believe that it’s been this long. Our life has changed dramatically. In some ways it has changed for the good, but most ways, it has not. The constant stress of this condition is draining – for both of us. I have always lived in a constant state of worry, but this just makes it even more heightened.
I know that a transplant is not the solution. Sure, it will give him a working kidney, but it also will be a whole new set of issues such as rejection, immuno-suppressing meds, and a hectic (first) six months filled with constant doctor visits. Oy!
But all in all, we are hanging in the best way that we can. It’s really all we can do.
Have you ever felt like “It’s always something?”
I guess that’s how I feel these days. It’s almost like ESRD is one step forward, and two steps backward. So very frustrating, and honestly, it is always something with this condition.
We finally got the infection at the catheter site cleared up. I guess that the antibiotics and bandage changes finally did it. We were quite happy about that, as it’s been a long uphill battle with this since the sepsis hit in July.
Yesterday was a pretty good day for me. I took a half day to wait for the Slomin’s Security systems to come to put in another motion sensor. We’ve had a rash of burglaries in the area, and they are hitting too close to home. Our next door neighbor’s house was one of the attempted break-ins. While they didn’t get into her house, just the thought of someone trying was enough for me to take additional security measures. It’s easy to get lax with setting the alarm when we leave. It’s easy to leave the sliding door open when I go upstairs. So a little bit of caution would not be a bad idea here.
I got a lot of stuff done at home. I was able to clean the house, get the Christmas cards written out, addressed and stamped (and out in the mail this morning!), and actually catch up on some much needed “me time”.
I was actually feeling pretty good and positive overall. Better than I have in a long time. I was also on top of the world because my other blog entitled Life, Love, Laughter, and Logic was “Freshly Pressed”. What does this mean?? Well, each weekday, the editor at WordPress.com selects a handful of new posts to put on the homepage, known as Freshly Pressed. These posts represent the best and brightest content of the day. I was quite happy about this since I read those “Freshly Pressed” posts almost every day, and I think to myself, “wow, these people sure can write!” Now I am one of them. Quite an accomplishment in my opinion!! Woo hoo!!
Murphy's Law says, "If it can go wrong, it will!"
But as Murphy’s Law states, “If it can go wrong, it will”, and this proved to be the case last night. We’d just turned out the lights to go to sleep, and Mark told me that he could not feel the thrill (which is the sensation of the blood going through his graft). I tried to feel it, and I couldn’t feel anything.
I thought, “Oh great!!” Just what we need now! He just got rid of the infection, and now there is a new problem! When I initially asked Mark what he was going to do, he said he would call Dr. Ciervo, and he would try to get an appointment for Saturday. I nicely reminded him that he has dialysis on Friday, and he would need the graft to be working. He said he would be fine until Monday. Wrong answer.
Today he called the Access Care Center in Union, and he made an appointment for tomorrow morning at 10AM. I was hoping that they would fit him in today, but I suppose they know what they are doing.
I am not sure I would have handled this situation differently. I tend to get panicky in these kinds of situations, so that affected my sleep last night. I kept worrying about the “worst case scenario” such as:
- Infection (sepsis again? Oh my, just shoot me now!)
- Inability to save the graft (a NEW one? Another catheter?!!!)
- More surgery?
- Another hospital stay?
- Missing the holidays?
You can see where my panic comes in?? I’m really good at worrying! It’s one of the things that I do BEST!! I totally excel at it!!! Mark is more laid back when it comes everything. Part of that is a good thing because we balance each other out. If I am not careful, I can let that worry and panic spiral out of control, and all of a sudden, I am a mess!!! So the key is to allow things to happen because I can’t change the past or the future. Sad, but true!!!
So we will see how the appointment goes and what the doctor says. Then I will know if I need to panic or not!!!
Hello Bon? You out there???!!!
Things here are going along quietly, and while that is good, I am often afraid to hope. I did that back in July by saying that things were going really good, and we know how that turned out. Two weeks in the hospital with a case of sepsis!!!!!
So with that, I will silently hope for the best, but not brag. Every time I allow myself to think that things are going well, I get into trouble!!
You can’t run away from trouble. There ain’t no place that far. ~ Uncle Remus
So anyway, around here, Mark’s been doing pretty good. He got his catheter out on Columbus Day which was the 11th of October. I actually got to watch the procedure!! I thought the vascular surgeon would kick me out, but he didn’t!! I found it pretty fascinating, in a sick kind of way!! Dr. Ciervo cut into the area around the catheter. I should have video’ed it!! Now THAT would have been cool!! Dr. C had a bit of trouble getting the catheter out due to the scar tissue build up, and the fact that, due to Mark’s body build, the insertion had to be pretty deep, but he got it out with some tugging, pulling, cutting, and blood!! But a few stitches and it was all good.
Mark is STILL afraid of infection, and he still has me putting neosporin and bandages on it. It is closed up now. It is healing nicely — considering that it looked pretty nasty when the procedure was first done. The surgeon told him that he should monitor it for about 3-4 days, and then it should be fine if it had no signs of infection. Well, it’s pushing 4 weeks now. But who am I to judge?
The graft is working pretty good so far. It gets checked again in January for any blockages or clots, etc. No more problems for a while PPPPPLLLLLLLEEEEAAAAASSSSEEEE!!!
Mark’s job is going pretty good too. He seems relatively happy teaching again instead of being the Technology Coordinator. He enjoys the kids, and I do believe the teaching is easier on him. The Tech job became pretty bad when they assigned the coordinators to handle TWO SCHOOLS. So he would have been doing double the work, in the same amount of hours, for the same amount of money. I think not!!! Glad he is teaching… and he is teaching the 3rd, 4th, and 5th graders. They are still teachable, and they don’t bring guns, knives, and other weapons to school!!!
Oh, we also got a different health insurance company, effective October 1. We had Horizon Blue Cross Blue Shield, and now we have Aetna. All co-pays and stuff remain the same — and in some ways, the new insurance is better. Aetna does not charge a $35 co-pay for Mark’s dialysis, so he just pays our normal $5 co-pay. That saves us a nice bit of money since he was able to drop his medicare insurance.
Luckily our doctors and specialists all accept Aetna. I would hate to have to deal with finding new doctors and stuff. That would just not be fun.
As for me, I am exhausted. And to be honest, I have not been feeling well.I thought it was stress related since it started in late July when Mark got sepsis. But it has not gone away. For the record, the stress didn’t go away either (although some of the pressure has been lifted), but I don’t think my symptoms are normal. I will spare you the gory details, but I felt “unwell” enough to visit my doctor. I’ve been having intestinal and digestive problems. I talked to my primary care doctor about it, and she thought it best to refer me to the gastroenterologist in the office for evaluation. Dr. Webber did a Celiac Panel because he thought that my symptoms could be indicative of celiac disease. And, as if I am not having enough fun these days, had me schedule a colonoscopy. Oh joy. Can’t wait for that!
The Celiac Panel gave back negative, so now the colonoscopy is imminent. I was hoping that I could avoid it for a couple more years. I also went to the gynecologist for a check up to rule out any “female issues”. I figured it couldn’t hurt. He said things seemed normal. I told him about my symptoms, the Celiac test, and the colonoscopy. He seemed to think that was a good plan. He did mention that although the Celiac Panel came back negative, I could still have Celiac Disease, and the best way would be a small intestine biopsy. He said that my symptoms certainly are those of Celiac Disease, although, they could be many other things. Ugh… not something I want… so we will see what the colonoscopy reveals, if anything.
I am also battling insomnia. That’s nothing new though. I usually stay up pretty late (12-1 AM) on a week night, but these days, sleep does not come so easily. I’ve been up at 2AM, or 3AM, or even 4AM. Not a good thing when you have to start the day at 6AM!!! Not sure what the problem is. Stress? Anxiety? Life? An underlying medical issue? Who knows. It’s ugly though. I feel exhausted by 6PM, and then all motivation just about leaves me. I just want to sit on the couch and do as little as possible. I try to do some stuff during the week so that all the chores are not waiting for me on the weekend, but lately I have to FORCE myself to do anything that requires moving or thinking. Look up “couch potato” in the dictionary… I bet my picture will appear!! 🙂
Being that blogging requires thinking, I have been pretty silent lately. I just don’t seem to have a desire to write. That’s odd for me. I enjoy writing. It frees my mind. Now I free my mind by endlessly watching TV, playing Spider Solitaire, and Farmville. How pathetic!!! I think that it’s all catching up with me. Sigh…
But I guess I do need to be more chatty when it comes to writing this blog. I know it’s all about my struggle with Mark’s kidney disease, so I suppose this qualifies as my “struggle”. Even though the insomnia has reared its ugly head recently (which is not something that its done in quite a while), and the gastro disorders are causing me discomfort, and the stress/anxiety is still around…. it’s still MY struggle… and I get to write about whatever it is that I feel like it.
So that’s where we are these days.
Back to a Routine…
With school having started on Tuesday, Mark and I are trying to get to back to some sort of normal routine. The summer always throws a monkey wrench into our schedules. This summer was even more crazy than others because of the hospital stay, the doctor visits, the stress, etc.
Mark made it through his first two days of school, and currently is trudging through Day Three! He found out yesterday that the weekly staff meetings are now going to be held on Tuesday. They were being held on Monday, but he was not able to attend because he needed to leave to go to dialysis.
Now that the meetings will be on Tuesday, he has to work until 4 P.M. He was not really happy about that since Tuesdays and Thursdays are the only day that he gets home at a decent hour. Now he will be getting home close to 5 P.M. (like the rest of the world!!!)
I look at it this way, he got out of the meetings last year. They are mandatory and are part of his contract. So he needs to just deal with it, and go to the meetings!!!
He says he’s feeling pretty good which is nice to hear. I figured he would be tired and worn out from getting up early and working (instead of watching True Blood and westerns on the couch). But he is a trooper, and he is holding up better than I would have thought.
He has a short week because Monday was Labor Day, and tomorrow is Eid ul-Fitr (marking the end of Ramadan) so school is closed. In our town, the schools have off today and tomorrow because of the Rosh Hashanah (the Jewish New Year). At least that will give him time to get acclimated to his schedule!
He also went back to his “after school” dialysis time. He was going at 6:15 in the morning during the summer so that he could be home in the evenings with me. That was nice, but I got spoiled!! I got used to having him home, and last night was pretty weird to come home to an empty house! I did get a lot of stuff done though! It’s been difficult to get chores and projects done when he would be home. For some reason, he always seems to enjoy talking while I am on the phone or trying to concentrate! I think that’s a guy thing!
It was also difficult to get the house chores done while he was home because he can be quite distracting! Last night I was able to get a lot done, and I felt really productive.
We are supposed to see the vascular surgeon, Dr. Ciervo on Saturday. Mark needs his post surgery follow up appointment for his graft insertion. He says he still has some pain under his arm where the majority of the incision is made, but he says it is getting better each day. We were not supposed to change the dressing, so all I have been doing is re-taping the bandage so that it stays on! We are hoping that we will be able to see the surgeon at Bayshore Hospital so we can avoid the trip to the Eatontown office. But we will see how that works out!
All in all, it’s been a quiet week at home. Work has been a whole other issue though!! No one said that life was easy!! LOL
Addendum to “tired”
While I may be tired (how about mostest exhausted!!!), I can’t sleep! I have always battled insomnia over the years, but normally a benadryl or a glass of wine will cure it.
Not these days! I have taken two benadryl and still tossed and turned for hours! The glass of wine didn’t do it either! I gave up on wine after two glasses because I didn’t want “wine head” the next day!
I can’t seem to shut my brain off. It seems to race 24/7. It’s not just about Mark but also with things to do, chores, work, family, goals, remembering dates and appointments and things of that nature. Sometimes even after I fall asleep, I will wake with a thought! I have resorted to keeping a pad and pen next to my bed so I can write it down and not have to stress!
The Xanax and Klonopin that my doctor prescribed does help but being that both of those meds are highly addictive, I use them only when I need them! I have enough stuff going on without becoming a “benzo addict”!!
So it’s almost midnight. The family is asleep. I am awake. I will go read my book on my Kindle. I am currently reading, “The Last Song” by Nicholas Sparks. In case it sounds familiar, it was a movie with Miley Cyrus. I didn’t see the movie. The books are always better!
After I finish “The Last Song” I will start on the “Twilight” series by Stephenie Meyer that my friend gave to me – and I converted them to Kindle format! I have enough stuff that I want to read to last me to the end of time!
I figure I am good for at least another 2-3 hours!
::::: she waves goodnight:::::
The Daily Dialysis (aka A Widow's Walk...) 
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