It’s been a while…

So…it appears that I haven’t blogged for a long time. Where does the time go?

As previously posted, my kidney disease returned in relapse form. I spent 6 months on Prednisone before the kidneys returned to normal and gained 40 pounds. In the last few weeks of Prednisone I started a daily chemo dose of 4 pills to prevent any further relapses. My white blood cell count fell to 2.5 (shouldn’t go below 4) and I was advised to cut the dose in half (down to 2). Weekly blood and urine tests indicated after a few weeks that the count was not improving so we stopped the chemo for 1 month.

One month later, I resumed the chemo pill, but only 1 each day. I was on the chemo for a total of 3 months over a 4 month period. The chemo stopped 1 month ago. I have lost 26 of the 40 pounds that I gained on Prednisone. The chemo round should prevent any future relapses in the kidneys and, therefore, no more Prednisone.

Due to my immune system going into the toilet with the meds, I have had infected sinuses for several months – can’t get rid of it. Very frustrating. Every once in a while my lungs fill with congestion and out come the puffers.

Now for some better news…..our grandson will be 3 in March – oh boy. He continues to be a delight. They had moved in February to the back of beyond and my ex-husband’s home. Six months later our son had a new job. They moved in with us for 2 months and moved into their new apartment in Mississauga in October.

Son #4 finished college in Ottawa in the spring. He moved in with us for a month (his girlfriend and cats went to her mother’s). Now they have an apartment in Oshawa.

Son #1 will be 30 on Boxing Day. He quit his job at the end of May due to major problems with his friend and partner. No job yet.

Son #2 visited this summer from Sault Ste. Marie. All is well with him.

Son #5 is still in school in Sudbury.

Hubby and I cancelled our summer vacation as his mom fell and broke her hip. Surgery and rehab were required. The hitch? She lives alone and has a lot of food allergies. I cooked all her food for 2 months, until she went home. Hubby took her food in daily and set up her meals. No food could be used from the hospital’s kitchen.

The ladies and I travelled to Baltimore in October to work at the International contest of Sweet Adelines. Our chorus doesn’t compete until next year in Las Vegas, so this was a great opportunity to work behind the scenes. We loved it.

The weekend after Baltimore was our chorus show. A great success, but now quite a few members of the chorus have pneumonia, the flu, or bronchitis. 2 rehearsals have been cancelled, but our Christmas party is still on for next week. I am honoured to be the emcee again this year.

Hubby and I just back from a business trip to Edmonton. We had a wonderful time and I occupied myself while he was working. I visited the Muttart Conservatory and had afternoon tea at the Fairmount Macdonald. We visited the West Edmonton Mall and the Edmonton City Centre.

Today I attended my godfather’s funeral. He was a lovely, kind man.

That’s my life for the past few months. If I can kick this sinusitis I will be much happier. I have a Neti Pot, Nasinex, Dristan, Aerius, a warm humidifier at night, and my puffers. I need to go back to my doctor and ask for something stronger.

Posted in Uncategorized | Leave a comment

A welcome chorus hug

I’m back on high doses of prednisone to bring my minimal change disease back in line. The doctor says that the blood tests indicate that I’m back in remission, which is good, but must be slowly weaned off the prednisone. When I relapsed I was on 80 mg. daily. I am now reducing that by 5 mg. every Sunday. This Sunday I will be down to 50 mg. Previously I was taken off too fast and that resulted in terrible pain in my legs – I couldn’t get away from the pain without morphine in Emergency. So, we go slowly to avoid that.

The high dose brings on side effects: insomnia, hair loss, weight gain (you always feel hungry and must distract yourself), acid reflux, calcium loss (leading to problems with bone density), and others. For me, the worst is the classic “moon face”. Fluid builds up in your cheeks and neck – there’s nothing you can do about it, but it is the most obvious side effect of the drug. I passed a co-worker in the aisle the other day and she said, “Oh, you must be back on your meds again. I can see it in your face.” You try to be normal and carry on with your life as best as you can, but there are just some things that tell the tale to anyone who sees you.

The “moon face” makes the relapse public and it’s embarrassing. You don’t want people to consider you as “sick”, you want to be treated normally. You’re OK in your home, but when you go outside people notice.

To that end, I went back to chorus on Wednesday night. I had missed last week due to arriving home late from Detroit with hubby. The “moon face” developed since I was last at chorus, so it was going to be obvious. On Tuesday I sent an email to my fellow chorus members, explaining that I had relapsed, but was now in remission. I explained the disease and its side effects. I asked for hugs.

The result of that email was amazing. I got so many emails about how strong I was and that my humour would carry me through. People talked about their own experiences with sickness in their lives and their recovery. When I arrived at chorus people came from around the rehearsal hall and lined up in front of me. Hugs and best wishes and support surrounded me all night.

To my chorus – thank you. There is no other group of 160 women who meet once a week that gives support and understanding whenever its needed – and I needed it. I am strong because of the family and friends that surround me. They wish me well in many ways and a hug is never far away. I will get through this relapse stronger than before and I thank and cherish everyone for their support.

Posted in Family, Illness, Sweet Adelines | Tagged , , | 1 Comment

On the road again

Taking the first of 4 road trips to the US this week. Hubby and I are visiting Washington DC until Monday. We drive to Detroit and return home on Wednesday.

Never been to Washington DC before – have driven past it on the way to other places.

Got my e-ticket to ride the trolley all around downtown. Will be able to see all the things I’ve only read about before. Very exciting.

To stand at the Lincoln Memorial and walk the National Mall will be amazing.

We arrived in the dark after being on the road for 10 hours today. Great drive. No snow south of the lakes. Our snow at home is piled high. Great driving weather through NY and Pennsylvania. Hit Maryland in the dark. Used a tank of gas to get here.

Stopped at Golden Corral in Erie, Pennsylvania, for lunch. Always a great meal for a great price. Not disappointed this time.

The comfort stations along the way are always fantastic. Washrooms always clean and plentiful. Had to remember to pay first for gas both times. Very different from home. We like paying cash though. Credit cards don’t work at the pumps as you need a US zip code to make them work. Bit of a pain.

Got calls from sons #1 and #4 along the way. Solving problems from a distance. Skyped “Happy Birthday” to our grandson who turned 2 today. So very cute. Showed grandma the trees outside his bedroom window. Gave grandma a big kiss goodbye. So adorable. Being a grandma is terrific. But since they’ve moved 3 hours north of us, we don’t see them weekly anymore. Miss them all terribly.

Trying to get to sleep in a strange hotel bed. Not easy for me. Bed not uncomfortable, just not mine. Brought our pillows which makes it easier to sleep. Road trips allow us to pack so many personal items. Our fan, our pillows, our laundry basket, snacks, tea provisions, etc. Can’t get that stuff on a flight. Makes the hotel room more like home, sort of.

Oh well….more adventures tomorrow around the nation’s capital.

Posted in Travel | Tagged , , | Leave a comment

An evening concert

I took the plunge in November to purchase tickets to see Paul Simon and Sting in concert tonight at the ACC. Not really a concert goer, but wanted a night out with hubby. He’s complaining a bit as he’s missing the Leafs game tonight, but he’s being decent about it.

I love music and the performance of it. I’m not into crowds or jostling for space. Also, I pay for a seat to sit in, not stand up all night. I’m short and I can see better if everyone around me sits down. However, I have no control over other people and their boorish behaviour, so I generally avoid being put in the position.

Hubby loves Sting – me, not so much. Paul Simon is an historical thing for me. Many childhood Sunday afternoons with Simon and Garfunkel on the stereo. Their “Bridge over Troubled Water” album, I mean, really – nothing better.

So, they’re on stage together tonight. Should be a folksy, bluesy kind of evening.

Another high note….$100 in gift cards for the Real Sports Bar & Grill. Dinner reservation for 5:30 and the concert at 8. Hubby will get to watch a good amount of the game on the big screens that overshadow the restaurant, before we have to leave to walk across Maple Leaf Square to the ACC.

Any evening I can have with hubby exploring different things is a good evening for me. With my illness getting better with the addition of drugs, I’m due for a night out.

Back to work tomorrow morning. Before you know it the weekend is over and Monday rolls around again.

Posted in Family | Tagged , , , | Leave a comment

A diagnosis

Sometimes the smallest thing becomes the biggest answer.

I returned to the hospital for an abdominal ultrasound on Wednesday morning. I was to wait in Emergency for the results and get more blood tests done. Eventually (after 3 hours) a medical trainee (really – it said Medical Trainee on his ID card) announced that the ultrasound was normal and although the blood tests indicated problems they really couldn’t help me. Maybe more tests? Shook our hands and told us to have a nice day as he exited the examination room. Hubby and I looked at each other. What do we do now?

We decided to go to lunch at Swiss Chalet. We used the money from  hubby’s mom that she gave us for our anniversary to have a lovely lunch together. We didn’t know where to turn. Entering the car in the parking lot my cell phone rang. The nephrologist’s assistant, Jamie, wanted us to return to the hospital and to the office for 1:45. The doctor had finally been able to review my morning ultrasound and the blood tests from emergency. I said that everyone had been telling me that it was the liver, not the kidneys, was she sure? Jamie said that she had spent the last 2 hours back and forth with the doctor; she would trust him with her life and she was trusting him with mine. I said that we would be there at 1:45.

Hubby and I returned home for a little bit (it’s never good to go out in public with Swiss Chalet sauce down the front of your shirt). Arriving back at the hospital I got a big hug from Jamie who said that I wasn’t to worry.

Got weighed on the giant scale in dialysis that accommodates wheelchairs. Yikes. I know that my body is terribly swollen with fluid, but I still don’t like weighing that much. Into the blood pressure room for the standard 6 readings. The kidney doctor comes to see me and my tears at being in such condition. He, as always, is reassuring and down-to-earth. His bedside manner is brusque, as always, but he gives you information directly and confidently. I trust him.

In his office he says that I have minimal change disease and that I have relapsed. Looking up the details later – this disease attacks the kidneys and confuses them. It usually occurs in children between 1 and 7 years old (80%), but the remaining 20% of cases affects older children and adults. Of that 20%, 80% have it once and go into remission. The remaining 20% will relapse. I am part of that group. There are 2 definite signs of MCD – the kidneys slough off protein into the urine leaving it foamy (I had been seeing this for almost 2 weeks) and because the body senses this the body retains fluid in the abdomen, legs, and feet. There it was. The 2 symptoms I was showing.

I was put on 80 mg of prednisone daily for 6 weeks. Lasix to reduce the swelling. Actenol for the bones once a week. And the respirologist was paged to step up the April 8 appointment to deal with my right lobe pneumonia. We were so relieved. At last, a diagnosis. Once the relapse has been dealt with I will start a life-long regimen of once-a-day medication to stop any future relapses.

So, onto the drug store to fill the prescription. But wait…not so fast. The pharmacist is confused by the prescription. How much prednisone? The script says “80 mg prednisone for 6 weeks, reduce to 60 mg”. Well how much is that? I was told to reduce the 80 to 60 once all swelling had gone down. “He’s prescribed the old style of Actenol that you have to take on an empty stomach. I’m going to see if he’ll change that to the new style that you take with food. Check back with me tomorrow.” They wanted to give me the prednisone in 5 mg pills, when I know that 50 mg pills exist. I asked for the 50’s and got only 6 days worth.

I left it for a day and didn’t hear from the pharmacy. I went back yesterday (Friday) to check on things. They hadn’t heard back from the doctor and wouldn’t dispense any more. Back home I got a call from the pharmacy. The doctor was standing by his prescription, but they didn’t want to dispense it. I have enough meds until Tuesday. “Has the swelling gone down?” “Yes, but it’s not gone.” “Well we don’t know what to give you.”

Call from a very frustrated Jamie….”What is wrong with your pharmacy? I have never been questioned about a prescription before.” At the moment we’re leaving it until Monday. I will then make a trip to the drug store and sort it out. What a kerfuffle!!

Posted in Illness | Tagged , | Leave a comment

Before I was sick….

Once upon a time there was a middle-aged woman who lived her life without fear. She got up in the morning, went to work, did slight housework (hubby does the vacuuming), cooked dinner, and went to bed with her husband. Then, in April 2011, the free routine stopped. She got sick. First it was a month of pneumonia. A 2nd chest x-ray in May showed that the pneumonia was gone, but her breathing was still laboured. She tried to keep working, bowling, and singing, but gradually everything was too much effort and by September she no longer went very far.

The summer was consumed by hospital stays, more meds, more doctor visits, but no answers for the breathing. In October, she dared to travel to Myrtle Beach for a week with hubby. Coming home through Philadelphia, the vomiting and headaches started. Within a couple of days after they got home, she was back in hospital. She pleaded not to be sent home until they found a diagnosis. Blood tests, urine tests, x-rays, ultra sounds, MRI’s, CT scans – all showed problems. Organs were affected – lungs, liver, kidneys, stomach, bladder – the only one that remained unaffected was the heart.

A kidney biopsy showed problems that were solved with high doses of prednisone over 6 months. Her body filled with fluid from the steroid and she had many sleepless nights. Her face revealed the puffiness and she stayed away from friends and family due to embarrassment. The last hospital stay gave her a respirologist, an internist, and a nephrologist. They all worked hard and by April 2012 she was off the steroids.

Her life became normal again. The weight was difficult to come off and complete success was never achieved. Eventually, a liver biopsy was done in July 2013 to try to find out why it wasn’t returning to normal, but there was no answer.

In September 2013 she got a sinus infection. With OTC meds it went away. Then she got another one. This time it moved into her lungs and remains there now. Prednisone re-entered her life 3 times. More meds. Another hospital visit when her breathing wasn’t good. Time off work. Time away from singing. Stay in the house. Any cough or sneeze in her vicinity could prove to be harmful.

This weekend the abdominal pain started and wouldn’t stop. She could feel her skin expanding to accommodate the fluid that was building in her abdomen and legs. It was time for the hospital again. But, this time, there are no answers there. Tests are scheduled. Doctors are informed. Kidneys are improving, but suddenly, the liver is not.

Before I was sick I lived my life fully. There were no boundaries. I didn’t worry about hugging those I wanted to embrace. I didn’t worry about my looks very much. I enjoyed my life and the activities in it. Now I live in fear. Our retirement is in the planning stage. I never wanted my health issues to be a part of the planning. I’m not working – money is tighter. I see the constant worry on hubby’s face. He phones more often to check on me. He misses meetings to be with me during tests and appointments.

The view has changed. I hope it will change again.

Posted in Family | Tagged | 1 Comment

How to stay comfy when the world outside is white

Surprise, surprise – it’s snowing again. The predicted storm arrived this morning. White, fluffy snowflakes gently falling to the ground and adding to the previous load of white, fluffy snowflakes. The weather gurus have predicted more snow for Sunday.

How to survive? Well first of all, don’t be scheduled to work. Very simple. Next, don’t go out. Also very simple. With predicted snowfall get the groceries the day before. Cancel, or don’t book, appointments. Get up late. Wear your pyjamas all day. Talk to hubby in Florida, but don’t talk about the weather.

Get a tea brewed, find your favourite chair, make sure the cats have food and water, charge up the KOBO, and find movies on TV. This morning

It probably didn’t get great reviews, but that doesn’t stop me from watching it in my family room. I laughed, I cried (not hard for me), I was occupied for almost 2 hours.

Currently the KOBO is charging and downloading the next group of books from the library. I love that I can access so many books for free through the library. I have started reading books from my youth – Ellery Queen, Rex Stout, Lucy M. Montgomery – and they’re all at the library. I don’t even leave the house or stand in line at the checkout. Fabulous!

Also, I listen to 94.9 the Surf, from North Myrtle Beach, as often as I can. That beach music sure cheers up a snowy day.

So, snow you can keep falling and building up the layers on the front lawn and back deck. I don’t have to go out until tomorrow morning. Hopefully, the plow has been by.

Posted in Family | Tagged , | Leave a comment