Tuesday, 28 May 2013

Good Things I Have Learned from a Bad Disease

 
 
 
1. Nothing on the face of this planet can equal the care and support of a loving partner.
 
2. The kindness of friends, family and acquaintances is boundless.
 
 3. I am more adaptable than I thought I was.
 
4. Pain thresholds are mutable.
 
5. Taking things slowly and carefully is not a bad thing (coming from someone who used to do everything at Mach 4).
 
6. You CAN let go of some things that you previously thought were very important without regrets; regret can be a burden.
 
7. Hopefully I AM a bit tougher than I thought I was; keep this image in mind: 
 
 
 
8. Asking for help is not admitting defeat.
 
9. The fine art of napping is not a lost art.
 
10. Finding out what truly defines who we are is exciting, even at this late date.
 
11. Small victories are not necessarily small.
 
12. Never, ever lose your sense of humour. The monster shrinks in the face of laughter.
 


Monday, 27 May 2013

Three Good Things

Fanfare, please!


From my most recent medical appointments came three bits of good news:

1. The Orthopaedic Surgeon doesn't want to operate on my left knee at this time. He says the damage is conducive to the RA and has handed management of that part of it over to my Rheumatologist.

2. The Cardiologist doesn't think I need the catheter ablation redone at this time and cut back my meds a bit based on the loop I wore for two weeks and the tests done earlier in the week.

3. The Lyme Disease test came back negative.


Monday, 20 May 2013

Bottom of the Rabbit Hole

...and into a strange and scary world.

Ever feel like the deck is stacked against you?



Many things have happened since my last post. Again, I've been doing this in bits and then will upload the whole thing when done.

Remember at the end of my last post when I said,

"The near future: Barring any phone calls on the bloodwork, an MRI on May 14; app't with GP May 15; back to cardio clinic May 21. There may be more stuff in there. Nice, pleasant ordinary stuff I hope."

Hahahahahahaha!

1. May 9-11: Progressively worse. Mornings pure hell. No more sweet spots in the afternoon for me. Can do virtually nothing for myself. Mike learns many new skills, including putting my hair in a ponytail. He does really well, but I consider cutting all my hair off to make life easier. Mike stalls me on that decision. I have no appetite and am losing weight. Things I used to find delicious leave me cold.

2. May 12: Yes. it is Mother's Day. Early in the morning, I see a Momma duck and her ten sweet little fuzzy ducklings at the bird feeder. It's a true Mother's Day moment.
I am so bad by late afternoon that Mike insists we go to ER. He gives me a choice: ambulance or car. I choose to try the car first. We know it will be a long and gruelling wait at the hospital if we come in on our own, though. We have to stop several times because I can't tolerate sitting for very long. We arrive at 7:00 and go through triage. They apparently don't like what they see, particularly the hideously swollen ankle/foot. Unbelievably, I am in an ER bed in a warmed gown and under a warmed blanket, being tended to by a very attentive nurse by 7:25! They take a lot of blood, and keep a line open for any meds. [Aside: Our typical approach to everything has always been to find as much (black) humour in it as possible. We find what we can here tonight. It's a good approach if you dig deep enough.] The doctor comes and does a complete examination, ordering tests and blood. They give me a great, big, lovely syringe full of some blessed liquid that makes me comfortable for the first time in weeks. The pain is still there, but so far away that I'd need binoculars to see it. I feel myself relax. It's a novel feeling. The doctor returns after checking over bloodwork results. He sends me for in-house x-rays to check if there is any damage to the ankle tissues. The orderly who takes me there is a hoot. Back in ER, and the doctor doesn't want to start treatment until a firm diagnosis is made. The RA factor (rheumatoid arthritis factor) hasn't shown up in my blood, but the results do show a lot of inflammatory stuff going on. The best gift? He has put in a request for me to attend the hospital's Internal Medicine clinic, which will get things rolling. It might take a couple of weeks. At least things will happen. He also schedules me for Ultrasound the next day to make sure there are no blood clots in that swollen leg. We go home, feeling like some good came out of the bad tonight. All of the ER staff were wonderful.
Now will begin the week of hospital/doctor visits every day!

3. May 13: The hospital calls and I'm in the Clinic for Thursday! I think somebody pulled some strings somewhere! We go in for Ultrasound. No blood clots!!!!!

4. May 14: MRI today, back at the hospital. Don't know how I do it, but manage to hold still despite the pain.

5. May 15: Back to my GP for followup. Believe it or not, this was the first appointment I could get to see him since April 15th. That's not right. Anyway, filled him in on everything going on. The nurse (who really is a wonderful and sympathetic person) was a bit surprised at all of the new stuff to read. They give me a paper telling me when my appointment with the Rheumatologist will be. Hold on to your hats and your temper: November 18.
I stifle my howls of incredulous outrage and just tuck the paper away like so much recycling. The GP gives me some better pain meds. We get copies of the bone scan results and any other tests not done at the hospital to take to my appointment on Thursday.

6. May 16: Off to see Dr. Ahmed at the Internal Medicine Outpatient Clinic at the hospital. This is a man who takes charge and knows what he is doing. He goes over all of the results of everything thus far. He even has the MRI results from Tuesday, which show a lot of nasty stuff going on in my left knee, likes torn cartilages and a ruptured Baker's Cyst. There's that, then all of this systemic inflammation and joint pain going on. He sees these as two separate things going on (then there's my heart thingie, so make that three). He asks us to wait a moment while he pops across the hall to the Orthopaedic Clinic. I get in to see a surgeon right away! They extract a bunch of nasty-looking fluid from my knee. This was incredibly excruciating. (I'm a big baby, but this really was excruciating. Mike took a walk while this was going on. I'm glad he did - he would have been ashamed of me.). Before I leave, Dr. Ahmed has called a Rheumatologist to get an appointment, they've scheduled me back to see the surgeon next week and I'll make an app't with Dr. Ahmed himself once other tests are done for followup. More bloodwork on the way home.
 Dr. Ahmed is my new favourite doctor.
The Rheumatologist's office calls and says that they can squeeze me in the next day at 10:00. No, no; I'd rather wait until November....

7. May 17th: Perhaps my worst morning yet. Not only is it almost impossible to get out of bed, but I end up hunched over the sink (the only place I can reach as I can't bend), dry heaving from the pain meds (didn't take them with enough food or water, we discover later. Lesson learned.). I visit Dr. Abdelgader, the Rheumatologist, who is probably going to see me at my worst. He spends about 40 minutes with us and actually looks at me (my GP seldom does that, believe it or not; eyes on computer screen). He goes over every little bit of info he has. He says Dr. Ahmed has talked to him on the phone about me. He examines me and asks a lot of questions. He's kind of surprised at the state I'm in. He's working like a detective, and narrows it down further and further. His fairly firm diagnosis is Seronegative Rheumatoid Arthritis, which is the type in which no RA factor shows up in the blood; about 30% of people with RA have this type. Symptoms and treatment are the same as Seropositive RA; it's just a bit harder to diagnose. It's an autoimmune disease with no cure. However, there are some disease-modifying drugs that can slow or stop the body's attack on itself, thus preventing further joint and tissue damage. One of the most common drugs is a chemotherapy drug which is taken in lower doses for RA, but is still rife with side effects. There are some things we can do to lessen those, though. It doesn't work for everyone. I'll need to get liver toxicity blood tests about every 6 weeks to monitor liver function, and beforehand get some chest x-rays and other bloodwork to make sure everything's good. I'll be back to see the Rheumatologist in about 4 weeks to possibly start that treatment. After discussing the treatment, he then brings in his ultrasound machine and shows me the fluid in my knees, and the patches of inflammation. It's actually quite fascinating. Then he does the best thing of all - he gives me a systemic injection of methyl prednisolone to get me through the next couple of weeks. Yes, it's a form of corticosteroid and I know the immense problems with those, but a blessing on the head of whoever discovered this stuff. I ask him if it's okay to take my other meds after having this shot. He says that I won't need my pain meds. Of course, I'm pretty incredulous. Mike had gone out to the reception area at this time to take care of some details with the nurse. The doctor says to me, "You're very lucky to have such a supportive husband.". Believe me, sir, I know!
Off to the x-ray department (just downstairs), then Mike goes to get the car while I make my way to the door. I go to get in the car and can sort of bend my knees! We look at each other in amazement. Things improve pretty steadily. I can't believe it.

8. May 18th: I get out of bed on my own and walk around the house (still not walking normally, but I'm walking!).  I'm able to shower and dress with just a tiny bit of assistance. I am feeling like me again, not that ghost of a lady who sort of looked like me. I feel like I have a big grin on my face all the time. Still really tired most of the time, but I can do things again. I feel the need to get many things taken care of before this reprieve draws to a close, though, and have to be careful not to overdo it.

9. May 19th: Mike takes me to do something I've been pining to do: a walk in the woods. We go to a nearby Conservation Area with a nice, level crushed limestone path. The weather is gorgeous. I manage to "walk" (my gait is quite unique) a mile in about an hour...not quite the Racin' Rabbit, but I am ecstatic to be the Shufflin' Snail. It's a glorious feeling, Nice, pleasant ordinary stuff . Back home for lunch and a three-hour nap. Kind of wore myself out, I guess. I feel like I have my life back, if only on borrowed time.
Mike is able to get his piano practice sessions in again. It's lovely to hear Chopin and Debussy wafting through the house again.

The near future (still can't look much further beyond that):

May 21: Back to see Dr. Tarhuni, the cardiologist.
May 23: Back to see the orthopaedic surgeon. Nothing can be done to that knee, though, until the RA is stabilised.
June 12th: Back to see the Rheumatologist.
An appointment with Dr. Ahmed in there somewhere. I have a feeling he's the one who got everything moving.

June 9th: The Canadian Arthritis Society Walk to Fight Arthritis, all across the country, with one happening here. There's a 1K and a 5K walk. If things have not started going downhill by then, I'd love to do the 1K. It is recommended that I raise at least $100 to register. I'll raise the $ but promise I won't be disappointed if I can't do the walk. Something to look forward to, though! I can at least go and support others, hopefully.

 
Carpe Diem!

Friday, 10 May 2013

From Bad to Worse and Worser Still

Since I last posted things have gone according to the title of this post. Since I can't sit at the computer for more than about five minutes at a time, I'll do this in small stages and post the whole thing when it's done.

Ever feel like you're slowly falling down a rabbit hole, not knowing when (or if) you'll hit bottom? And then, if you do hit bottom, you'll have to find your way through an unfamiliar and scary land until you can find your way back home? Just call me Alice.

The last post ended on a fairly positive note, and believe me I've tried to remain positive, but I am just not made of the right stuff for this. Things started sliding again, with pain and swelling increasing. Early mornings are almost unbearable. Once I actually make it out of bed, I start shuffling around doing what I call my "laps", around and around the living room and kitchen. I stop for very gentle stretching to my limits. I don't sit down for a long while as I won't be able to get back up without incredible pain. My "sweet spots' in the afternoon aren't quite as sweet.

1. May 4: I can't get out of bed. I seem frozen in place by pain. We decide to set up a higher bed downstairs for me. Mornings get worse.

2. May 6: Went for my bone scan. The technician was a sweetheart and worked with me and my limitations. There was only one part of it I couldn't do because I just couldn't bend that way. She counted down the rest for me and approached it like a half marathon: even though I was reaching the end of my resources, I hung in there past mile 12.5.
The same day, we went "shopping" for things to make my life better, things from the "Home Health" store, things to modify my living space (including a raised toilet seat - sorry for being indelicate, but you don't know how low the regular ones are until you can't bend your knees!). We also bought a high twin bed frame and fairly thick mattress to be set up on the main floor for me. I can slide off of it a little easier in the mornings and don't have to negotiate the stairs.
Then things got really weird.

3. May 6, part 2: Before I relate the main event, I need to rewind to 2003. I had episodes of SVT (supra ventricular tachycardia) due to an extra electrical connection in my heart. An episode can easily raise your HR over 200 just sitting still. I had a catheter ablation to destroy the extra connection. I'm told at that time that it's possible that the connection will grow back. Guess what? It did. Fast forward to now. 10:00 pm: I'm sitting on the edge of the bed getting ready to retire when it starts. At least I know what it is and try to stay calm. I was shown physical methods to try to convert it back to normal. I try several times. No go. It's probably because I can't squat down low enough due to my knees. I wait twenty minutes (standard for this), then call the paramedics. One of them turns out to be a sweet girl I taught years ago! She's 38 now, but we recognised each other right away. The paramedics managed to eventually convert me to a slightly more reasonable HR with a different method, then loaded me in the meat wagon for a very painful ride (not their fault: my joints) and off we go.
The ER doctor and nurses are amazing. They keep me for a while, monitoring things. Jamie (the paramedic) uses clout to bring Mike to me from the waiting room. Told ya she was a sweet girl! Some meds to get my HR down. The ER doc tells me I'll likely have to repeat the catheter ablation. He apparently doesn't like what he sees on the monitors (something more than just the SVT) and gets me into a cardiologist for the very next day! I'm eventually released, and two tired cowpokes drive home in the wee hours. I babble something about voodoo dolls and that I wished they'd stop sticking pins in me.
During the night, my over-fertile brain starts doing some equations: severe bone/joint pain; irregular heartbeat; the tick that came in on Mike's shirt after cutting the lawn. I look into it early the next morning. Lyme disease raises its ugly head. We decide to go to a walk-in clinic after the cardio app't to get a requisition for the necessary bloodwork.

4. May 7: Today, we visited the very impressive Windsor Cardiac Centre and Dr. Tarhuni. This place is exactly what you would want a medical facility to be. I go through several tests, including a treadmill one which they obviously had to adapt for me. When I saw the "speed" I was going I almost wanted to laugh except the desire to cry was stronger; I did neither. There's a lovely full wall photo of a wooded hiking trail in front of me and the lights are a bit low, but I can see the monitor from the treadmill that there are some pretty irregular things going on. After this, they fitted me with a state-of-the-art monitor that I'll wear for two weeks. These are the folks who were written up in Runner's World for the cutting edge experiment they did with runners using these monitors at the Amherstburg Marathon. You can read about it here: http://m.runnersworld.com/health/real-time-cardiac-monitoring-makes-marathon-debut . I did the 10K at that event and was able to watch at the monitoring booth for a while when I was done. Never in a million years did I think I would be wearing one.
Then we went for a summative meeting with the main cardiologist. He had all of the printouts and info from the tests right there and also my history. He put me on some meds and asked about my difficulty walking. We asked if Lyme disease could cause this and heart problems. He turned to us and said, "Oh, yes!" He gives us the blood requisition. He's also going to book the London app't for surgery once all of the info is in finalized format AND will "talk to" my GP (now I didn't say anything except that he's been very difficult to get in to see, which is the exact truth), as well as take care of several other things.
I guess sometimes bad things happen for good reasons (ER trip to getting in here). I am totally impressed with this clinic.

5. May 8: Bloodwork for Lyme. Won't have results for at least three days. I call my GP's office to see if they've made the Rheumatologist appointment yet. The request was sent, but it can take a long time. She offers to give me the specialist's phone number, which I take. I promise I won't heckle.
 Late this evening, before bed, we notice that not only my left ankle, but my left foot has also started to swell monstrously. This is getting kind of ridiculous.

6. The near future: Barring any phone calls on the bloodwork, an MRI on May 14; app't with GP May 15; back to cardio clinic May 21. There may be more stuff in there. Nice, pleasant ordinary stuff I hope.


And now I must take a few moments for an Ode to Mike. This man is incredible, and a damned good nurse, too. He has been doing so many things for me that I just can't do, makes sure I have what I need, modified the house for me, drives me everywhere, even has become a chef! His own pursuits and pastimes have been put on hold and he's been focussed entirely on me for the last month and a half. Some may say it's his duty, but I say it's just who he is: an extraordinarily caring and loving guy. I feel so guilty about the extra pressures put on him. I just hope that someday down the line we can do another hike in New Mexico or a walk in England. That would seem like a miracle to me.