We Need A Cuppa Tea


One of the downsides to being sick is that people are constantly poking at me, taking my blood pressure, and asking me personal questions about my body functions that I find embarrassing and none of their business. Quite frankly, I just want to tell them to leave me alone!

I have a home health nurse, who is really nice and funny. I like her, but I don’t like all the questions and the exam she is required to do every time I see her. I would rather sit down with her and have a cuppa tea and enjoy a good chat.

I also have a physical therapist who comes to torture me twice a week. I have discovered my lower body is very strong, but my upper body is weak enough that a five pound weight is agony if I have to lift it twenty times in a row. One – crap that hurts. Two – who ever came up with this is a sadist.

Three- Really? I have to keep going to twenty? . . . ect. I was not a happy camper. But I got it all done. Now my arms want to fall off. But I didn’t get really breathless either. I would have preferred we skip the exercise and have a nice cuppa and a chat too.

This is all supposed to help me heal and get back on my feet. But until I can breathe on my own, my life is limited to the length of my oxygen tube and that really sucks. I have to drag along one of those smaller tanks if I want to go out, that means I have to find a way to keep it out of the way of other people, and deal with either looks of disgust or pity from others. I can deal with it, but it bugs me to be an object of pity.

At least little kids are honest, they ask me flat out what is wrong with me and what my tank is all about. I even let one feel the air flowing from the breathing tube. He thought it was cool, but his embarrassed mother dragged the kid off before we could talk more. I am more than my tank, people.

At least I am out of the wheelchair. When in one of those, no one sees you. They look over, past, and around you because they are either uncomfortable with seeing some one in a wheelchair, or they are afraid they will have to deal with a sick person or disabled person and they aren’t prepared to do that. However, here in the South, men will hold the door open for the Mr. and I to get through. Even if I am just walking with my cane and he is pulling the tank, folks will hold the door for us. That’s nice. So I tell each one thank you for being a blessing today. It makes them smile, even if they feel a bit flustered.

Each day I try to improve. I follow the rules, take my medication, do my exercises, and obey all the regulations on food and drink. So, why am I still sick? I guess the doctor will tell me on Thursday. If I didn’t have doctor appointments, I would have no social life at all. We all need to sit down for a cuppa tea and a nice chat about anything but my body functions and how well I breathe. Really, we do.

Two Steps Forward


Every time I get two steps ahead, I get knocked back one. We went to our new home to drop off the first load of things. And wouldn’t you know, I had a heart attack, without warning, and ended up having two stents placed in the back of my heart. That lead to a week long stay in the hospital in Oklahoma.

As we drove back to Mississippi, my hand began to hurt more and more until I was in agony. I knew the graft in my arm was causing the “Steal Syndrome” but what I didn’t know was that it had collapsed when I had the heart attack, and my blood pressure dropped very low.

We went straight to the hospital in Mississippi. We were blessed to have Dr. Wright on duty in the Emergency Room. He took one look, realized it had little to no blood flow and immediately went to work to track down the surgeon who put in the graft. I was transferred to Memphis to the Methodist University Hospital where the surgeon stopped the graft from working and restored the blood flow to my hand. Three more days in the hospital followed. And the news that it will take up to six months for the nerves in my hand to heal. The pain is horrific. Mind you, the trip down to Oklahoma was a four day event, originally. See, I was feeling great, and one huge step backward screwed up everything.

I did learn some things while dealing with all of this:

First of all, I am married to a saint, who put work and everything else on hold to take care of me. He is still taking care of me while I am getting my strength back and weaning off of oxygen. He cooks for me, or brings me take out. He keeps track of all my appointments and medication, and he nags me to take care of myself. I am worried he is going to get sick himself because he worries too much.

Second, I am no longer in charge of my life. Doctor’s offices call and say they have me down for an appointment without checking with me first. REALLY ticks me off when they do that. Especially since I have dialysis from 2-6 pm on Monday, Wednesday, and Friday. I have home health people who call every day, and come see me on Tuesday and Thursday, not to mention the Physical Therapy lady – and they just decide to come right on over. At least they call a day ahead.

Third, nothing annoys me more than to be treated like an invalid. I can get around, as far as my oxygen hose allows. I can wash, dress, and take care of myself on a personal level. And as I heal, I get more grumpy by the day.

Fourth, I have wonderful friends here in Mississippi (Thanks Damian for stepping up when we needed you, and Thanks Vickie Dye for helping when we needed it). And I have loving and caring friends on line who pray for me, worry for me, and cheer me up. Thank you all from the bottom of my grumpy heart.

Fifth, I am determined to get back to where I was. The first step is getting off the oxygen by October 30th. I have tickets to see Elton John at the FedEx Forum that night. I am NOT going to miss it if I have to go with the oxygen and in a wheelchair. But I want to walk to my seat and enjoy the concert. The second step is getting my strength back. The physical therapist will start the process, but I am going to change it all up and get back on my feet. My heart isn’t damaged, and I only need the oxygen because I was short of breath and I am dealing with bronchitis. Third, I am going to get to all the appointments, listen to what the doctors say, and make my own decisions on the next step. They are all ganging up on me about early stages COPD. I have never smoked, I don’t understand that at all.

Fourth, I am going to Oklahoma for Thanksgiving, and hauling our biggest load of stuff down. Damian is stepping up again and driving the truck for us. But my goal is to cook Thanksgiving dinner with the help of the women in my family. A simple meal, but damn it, it is tradition that I cook on the holidays and I am not letting my family down. Most importantly of all, I am going to spend every minute I can with our Addie Rose, because when we move, we will only get her on school breaks. It tears me up to think of how much we will miss her.

I will take three steps forward from now on so one step back won’t mean all that much. And I will heal.

Taking On The Future


Lately, I have slowly come out of a depressive mood. It was brought on by the sudden need for kidney dialysis, causing the cancellation of a much anticipated trip to Italy. Something I had dreamed of doing for many years, but mostly something I wanted to do with the love of my life after finally overcoming the distance between us brought on by the loss of our son, the natural slipping between two people who take each other for granted, and the process of an aging relationship. I was looking forward to the special time alone in the city we both love.

We were within days of getting on the airplane when I came down with an illness that threw my body into chronic kidney failure. I was furious with myself for allowing myself to get into such a state, and I was miserable with guilt for ruining our trip. I cried, ranted, and fell into despair. I felt like I had failed both of us. I knew he didn’t blame me and all he cared about was that I got better. He wasn’t angry, and he loved me no matter what. But those of you who suffer from depression understand that logic has nothing to do with the feelings that lead to depression. I was a failure, once again. Damn it all.

Over the past two months, my new normal has taken most of my time. Quite frankly, I hate being tied to a damned machine four hours a day for three days a week. It creeps me out to think that it must remove all my blood, clean it, and put it back just to keep me alive and mostly well. So, the depression had a strong element of anger mixed in. The anger was mostly directed at myself, no logic involved there, of course. This was not what I had planned for this stage in our lives.

Being tied to a machine makes me feel less that attractive, and having this thing in my chest is down right disgusting to me. Absolutely kills any thoughts of sexy or desirability. It has a huge ick factor going for it as far as I am concerned. The Mr. keeps telling me he doesn’t care, as long as I am getting benefit from the treatment, I can have all the bits I need attached and he will still want to chase me down the hall to the bedroom. What did I do to deserve such a man?

Now, here I am two months down the road and I am slowly, finally, crawling out of the depression hole I dug for myself. The good news is I have lost another nineteen pounds, my A1C is one point above normal, my stats are all good, and I am improving daily. I am less exhausted each day after treatment, and there is hope, albeit slim, that I can come off the machine at some point.

Sometime in the future perhaps we can plan our romantic holiday again. I hope so. But until then, I just need to get over myself and learn to accept what is in my life. And let the Mr. chase me down the hall no matter how I feel about how I look. After all, he loves me like I am, I guess I should learn to love myself too. Time to give myself a swift kick in the attitude and take on the future once again.

Annoyed


I know each facility for dialysis will be different in the set up, room size, and people. I get that. But today I was annoyed beyond reason when the nurse spent the majority of her time with her face in her phone texting away. Bells would go off, patients were getting antsy and uncomfortable, but she would do the minimum and go right back to her phone. My machine, I called him Clyde, was done and practically screaming the fact for a full five minutes before she put her damned phone down and came to get me unhooked. No apology, nothing, I guess I was disrupting her busy social life on line. When I sarcastically apologized for bothering her, it went right over her head, and she replied “Oh, that’s Okay..” ARRGHH!!! SO vexing.
Clyde did a good job though, and other than being tired, I feel okay. No lasting aches and pains, and the headache went away as soon as I had something drink and a Tylenol. But that nurse’s lack of attention to her job really rankles. I think all personal phones should be banned when they are on the job. Just saying.

New Normal


The newest adventure in my crazy life is Kidney dialysis. I am supposed to be in Italy, but a case of bronchitis led me to kidney failure bad enough to need emergency dialysis. That mean the insertion of a catheter into my heart and a week in the hospital as they pulled over seen liters of water from my body. That was two weeks ago.

Now I am booked at a dialysis center three days a week for four hours or more a day. It is an out patient center, and we all have turn up for therapy. The center has a few offices up front, but the room for dialysis patents is one huge room. There are around sixty recliners, each with its own dialysis machine next to it. I usually get either number 48, 49, or 50. I call my machine of the day Kevin. They do the hard work, so I figure they need to be acknowledged and greeted every day. The nurses think it is funny. I take it seriously.

Once in the room, we are weighed for water gain. Then the nurse takes you to the chair. While they are getting set up with our Kevin, we are allowed to take out our gear. I take a blanket, because they keep it COLD in there. I take my Kindle, my coloring book and pens, Mp3 player and headphones-and a small snack since I get out after 8:30 in the evening. They have a TV screen above each station with limited stations, so I can watch that if I get bored. I generally don’t bother to turn it on.

Later appointments mean there aren’t a lot of people in the room. Most people nap, so it is very quiet. Most people don’t talk to each other, just with their nurse and aide. The later it gets, the more the medical people talk to each other. I find it interesting to listen to their stories, gossip, and frustrations with difficult patients. It is easy to see who likes whom, whose personalities clash, and those who simply avoid each other. It is even easier to see who is there because they love their work and who is there just marking time until they can move on. Fortunately, my team – always the same people, love their work and it shows.

What makes me sad are the patients. Some are so fragile, and it is clear they are getting near the end of their lives, versus people like me who are just starting out on this journey. I have a good chance for reversal of issues, and if not, a transplant. While they don’t talk in the dialysis room, they too greet each other and talk in the waiting room. They all come on the same day and see each other every time, so they share information, hints, tips, and ideas. They even make sure to greet me and welcome me every time I get there. They haven’t become super friendly yet, but this is the south and it is only a matter of time.

Most of the patients are elderly, the youngest is probably in h is forties. Some are very fragile, and most are brought in by family. But what you won’t see is a pity party or whinging. You will hear them laughing, talking about family, and sharing about their religious beliefs. Being forced to use dialysis as a way of survival brings our lives into a new normal that causes a whole new way of balancing everything, No matter if we go through outpatient dialysis or do the at home program, that means being positive, accepting that it is what it is, and that the machine keeps us alive one more day.

It is exhausting and leaves me tired. I can hardly walk at the end of a session, but it will get better as I adjust to the new normal for my body. Meanwhile, I am sure to greet Keven, 48, 49, or 50 each time, follow the rules, and learn to live this new normal of my crazy life, and keep moving forward. Italy will still be there in a few years, and so will I.