Rheumatoid Arthritis Symptoms Don't Rule My Aud Life

You’ve been referred to a Rheumatoid Arthritis specialist (Rheumatologist) and you’re anticipating your first visit. I’m sure you’re feeling anxious, nervous, intimidated and perhaps scared out of your wits, gathering your thoughts together and writing down questions to ask can make the most of your first visit.

For me, I had no idea what to expect, but I had a lot of questions that I needed answers to.
Here are my top 9 questions that I asked my Rheumatologist on my first visit.

1. Do I have arthritis? I know some blood work had been done, and my family practitioner suspected it, but I hadn’t had a definite answer.

2. What type of arthritis? I wanted to make sure that I had Rheumatoid Arthritis, and the Rh factor confirmed it.

3. What the first bit of treatment? My family Dr had given me cortisone shots but I wanted to know the next step, which was Plaquenil.

4. What does this new treatment do? Alright, so I’m on Plaquenil- what the heck does it do? Is it a pain killer? NSAID? Anti-inflammatory?

5. How long until I notice improvement? I needed a time line, something to set my sights on, and I was told it would be about 6 weeks before I really noticed a difference.

6. What if it doesn’t work? If Plaquenil didn’t put the disease into remission, then methotrexate would be prescribed.

7. How will my progress be monitored? I was told to keep careful watch and record anything new, and to bring all this information back with me on my next visit. Participation on both sides of the table is very important and can make treatment more successful.

8. What other tests will I need? I had already had some blood work to determine the Rheumatoid factor, but a test for Marfan Syndrome was also ordered, x-rays and a biopsy procedure were also booked.

9. What else can I do to help myself? I couldn’t just leave it up to the rheumatologist to fix my problem, I wanted to be a part of it too. I was advised to keep physically active as much as possible, to watch what I was eating, keep my stress level low and to rest as often as I could.

So, don’t be afraid to get involved and ask questions. Doctors aren’t mind readers, they need to be asked sometimes in order to share information.

What other questions would you ask your doctor?

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The deep aches and sharp stings of Rheumatoid Arthritis pain are things I’ve learned to live with over the past few years. The first few months after diagnosis were terrible, I was incapacitated with pain. My feet and knees were so terrible I needed a cane to walk and my hands were useless to open jars, and buttons were impossible. I was quite an unhappy camper.

As I’ve said over and over, I dove into researching RA. Food became an interesting topic as I discovered that many others had noticed that certain foods caused more pain and discomfort than others. I thought I would give it a try; I had nothing else to lose.

Red peppers, red wine and shell fish were quickly noted as pain triggers and were begrudgingly eliminated from my diet, but still there was pain. How could I keep up with my young family? I had to find something better. I found weather played a big role and heating pads and hot baths became more frequent and favorite friends.

I noticed that stress would set pain switch on and if I wasn’t active for more than an hour, stiffness set in, so walking was put on the schedule, which also helped with relaxing stress away.

One particular thing weighed heavy on my mind and that was the dependency of pain meds. In the past, with other health situations I had gone through weeks and weeks of extreme pain and had been given copious amounts of narcotics, morphine, Vicodin and Demerol. But at the most I was 3 weeks relying on them because the pain was temporary and an end was in sight. This was different, I would be living with RA for the rest of my life, how could I get through without abusing drugs? Who in their right mind wants to live 24/7 with no pain relief? And narcotics certainly help deal with that, and wow, they make me feel great! It was a big decision to dig my heels in and be determined that I would do all I could to better this situation before relying on mind and body numbing drugs. So far, I have been doing a pretty good job of keeping pain away, and in dire situations I take a couple of Tylenol 3’s.

When living day in and day out with chronic pain, a person learns how to cope. I began to keep an eye on the weather in order to prepare myself for pressure changes, I always make sure pain meds were handy, heat sources close by and diligently keep my immune system as healthy as possible. But even all this doesn’t entirely remove it.

I barely notice it now, unless it’s a bad flare, or really take the time to think about it. I supposed I’ve gotten used to it so much that it doesn’t register the same as it did even 2 years ago. I deal quite well with the daily stiffness and aches, but the sudden flares still send me for a loop, probably because they are so infrequent now. The sharp pains that feel like bee stings in my fingers, elbows, knees and feet are horrible, and because I’m on blood thinners, the inflammation usually causes quite a bit of ugly bruises which makes me look like I’ve been beaten with a ball-peen hammer.

Yes, Rheumatoid Arthritis pain definitely gets on my nerves to say the least, but the more I live with it, the more I learn to fight it; and the stronger I get, RA’s grip on me gets weaker. Until a cure is found, I’m quite prepared to fight tooth and nail. Bring it on!

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One way to get my mind off the troubles of arthritis is leaving home and going on vacation, which is just what I’m doing right now. I’m sitting in my cousin’s living room down in beautiful Ridgeway, Ontario just minutes away from Niagara Falls. It’s a lovely, soft evening outside and we’ve just returned from a fun packed day at the Falls.

We decided last week to take a quick trip down to visit family who have a son that our girls have a blast with. Wandering down through Michigan took a bit of Friday afternoon, and we stopped off for the evening outside of Flint where I knew a Red Lobster could be found. It’s been a year since my last crab leg meal and I was ready for another - even though shell fish cause flare ups. I had brought my Tylenol 3’s and dug in with my shell cracker and melted butter. It was so worth it!!

Within 20 minutes I could feel my wrists and elbows start, by the time we returned to the hotel, my knees were yelping, but I wasn’t going to say a word. I promised myself I wouldn’t make a peep and I didn’t! Fortunately it wasn’t too bad, I guess I over estimated the pain  (and that rarely happens).

On the road again the next morning after we found a Tim Horton’s (and in Michigan at that!) With my ‘large with milk’ and my husband’s ‘large with a double’ (that’s Canadian for 2 large coffees, one with milk and one with two creams), it was back to the Ontario border and into heavy traffic.

Today was fabulous! I got to take a long 5 mile walk through the quaint town of Ridgeway this morning. It was perfect, the air was sweet and warm, it was peaceful with birds singing and the occasional passerby saying, “Good Morning!”

The kids were scooped up and it was off to see one of the world’s wonders. They were very impressed and had almost as much fun as us  adults in the wax museums, arcades and other tourist magnets.

I’m having too much fun to been too concerned about the aches and pains. A vacation is a pretty effective Rheumatoid Arthritis treatment for me!

Tomorrow it’s Marine Land, I might even pet a beluga! How cool is that?!

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I think that one of the most frustrating things about my Rheumatoid Arthritis treatments has been my health care. I have other health issues besides my RA, and really should have a family doctor, let alone a few specialists- but I don’t.

I moved from Ontario in 2001 to Michigan, and left behind doctors I’d had for years. When I moved back in 2006 and notified their offices, they were full and were not taking any new patients. When I told them I wasn’t new, just returning, I was told that I had been away over 2 years and was not considered a patient of theirs any longer and so I was put on a 5 year waiting list (I have 3 years to go).

The city I live in is one of many Ontario centers where there is a lack of doctors, which is very unfortunate. When a blood test or prescription is needed, I go to the doctor on call at the walk-in clinic and wait for several hours with other people who do not have a family doctor as well.

Just a couple weeks ago I wrote a post that included my 7 hour wait with my daughter at the clinic just to have a blood test! I was so stressed that my arthritis flared.

I had a wonderful doctor and Rheumatologist in Michigan and I am thankful for the loads of information they gave me, and because of their encouragement, I sought out other avenues of pain relief and prevention of the damage of Rheumatoid Arthritis.

I looked into Naturopath/holistic healing and therapy. I was very, very skeptical at first and wasn’t too keen on the idea. A few years ago my husband tried to get me to try holistic healing, but at the time I was newly diagnosed and really didn’t know a thing about it. But with more research under my belt, along with being exasperated with my symptoms, I booked an appointment and was happy and very satisfied with my results. It did take time, good things always do, but it was worth it and has continued to be a part of my daily life and routine.

I still need to make a trip down to the walk-in clinic at least once a month to have blood tests for coagulation, prescriptions filled, or one of the kids needs medical attention, but I don’t have the angst and concern that I had a year ago. 2 prescriptions, methotrexate and plaquenil, have been eliminated from my list because I have been dealing with the arthritis differently and no longer need to take them for my Rheumatoid Arthritis treatment.

Finding a good, knowledgeable, compassionate doctor is so important to the life of a patient dealing with a serious disease. For me that’s a luxury I don’t have at the moment, but that’s okay because I have a wonderful Naturopath therapist who is doing a fine job filling in.

So you know how I feel about my health care situation, how’s yours?

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