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The Balance of an RA Life

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Rheumatoid arthritis is unlike many diseases. RA is a disease that is chronic. It is a disease that is progressive meaning that it will get worse over time. It is debilitating meaning that it will interfere with your ability to have a normal life. There is no cure. It is a tough disease. It may start slowly. It might not even be symmetrical right out of the gate. Or it might be like mine. Acute. Severe. All the classic symptoms. And it never really stops.

Mine is seronegative which means the test for certain factors is negative. Those with seropositive disease have more joint damage but those with seronegative have more systemic inflammation.

I recently had a full body scan after I had surgery for melanoma. There doesn’t seem to be more melanoma lurking in my body, but my whole cardiovascular system has atherosclerosis. No wonder those with RA die of heart disease!

A diagnosis of rheumatoid arthritis is not a ticket to feel sorry for yourself. It doesn’t help. I was lucky to learn that as a young woman and I am usually spending my time looking for solutions. I spend very little time feeling sorry for myself.

However, about a third of those with RA suffer with anxiety or depression. These are serious disorders. They are common with RA. When a person with RA has endless pain with no relief, it is easy to see them slowly descending into despair. There doesn’t seem to be anything else they can do. There is something more for them to know.

Their depression and anxiety may be connected to RA. I think I read somewhere of the genes for depression being on the same genes for RA. Some think there is a link between the two.

Those who are depressed or anxious need to talk to their doctor. He should be able to prescribe a medication that will help.

RA is a balancing act with many subsections. Anxiety and depression are parts of rheumatoid arthritis. Genetically. Physically. Plus all the little parts called pain and inflammation.

RA, as time passes.

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My RA is different now than it was in earlier years. Now I feel like I am in a continual flare with variations. Sometimes worse. Sometimes much worse.  And luckily, sometimes better.  Today it is worse.

I take tramadol and add 500mg ibuprofen. I take an extra Medrol.

The amount of cannabis that I tolerate is improving and does help most days.

I am very conservative. My primary orders the tramadol. Tramadol is a weak, synthetic opioid. It helps me but doesn’t help every RA sufferer.  My rheumatologist has agreed to my Medrol regime. I feel low dose ibuprofen helps inflammation as does cannabis.

My son made pancakes this morning. Excellent. Cheered me up. Yesterday we went to Sprouts to buy a turkey breast.

I am struggling with losing my sight. I take the AREDS 2 vitamins that help slow eye disease and I take moisturizing eye drops to keep them moist. I wear sunglasses when I go out.

We have had the balloon fiesta, Halloween, and Elections. Next is Thanksgiving, peppered with birthdays. Then Christmas follows quickly. Then it will be my birthday again.

Francis went to the groomers again. I think his fur is too short this time. He was cold during the night. On his belly curled in a tight ball. Maybe its time to buy him pajamas. His hair grows thick and long. He looks adorable until it starts to mat. He is a cockapoo, half cocker, half poodle. No he does not shed into the environment. He still sheds and that is why his hair mats. His shedded hair stays on his body. Francis is my first high maintenance dog and he is worth it. He is napping beside me waiting for his lunch.

Ballgames and a PET scan

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We are busy watching the Phillies playing the Arizona Razorbacks. We loved the first game and then the next was 10 zip in favor of the Phillies. Fun. Now they have moved to Arizona to play three games. They lost the first two. Tonight is the third game.

Instead of our movie we are watching the game. We will get takeout and hope for the best. Anyway, the games have been excellent in spite of the winner.

Yesterday I had a PET body scan to see if the melanoma had metastasized. The tech injected a radioactive tracer intravenously. The tracer is attracted  to the activity of cancer cells and will cluster in them. It was a two hour process.  I had to wait an hour while the radioactive substance saturated my cells before the scan was done.

Now the hard part. I could say the not knowing was no problem. It wouldn’t be correct. If I am cancer free, I will be thrilled. If I am not, I will have an uncertain future. Melanoma  can be cured if caught early. Mine was not It was hiding away on my back unseen by anyone.

Metastatic melanoma is frequently fatal and can be hard to treat. So you can see my life could easily veer in the wrong direction next week. I hope not and I hope the Phillies win and goes on to the world series.

A Good Week

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Life has been good. I had a special treat recently. I had my youngest son all to my self for a day. Growing new memories. He has  returned  to his home in Texas.

The weather has suddenly turned cooler. And I have suddenly settled into one of my worst flares of late.  It is amazing how that works. Doing fine. Then suddenly not doing  fine.

 I took extra indica cannabis last night. I needed the extra help sleeping as I was on the front end of a flare. The night before I had taken extra Medrol.

I still woke up this morning in total pain. My hands burned and ached. My shoulders hurt. All my joints  chirped in and I felt sick all over. I had to keep moving as I had a morning appointment with my primary. I poured water into the  coffee machine and added coffee. Next I let Francis out. The NYTimes and coffee were not enough to sort myself out. I went to the appointment holding on to my son.

Audrey  met my son for the first time. She was feeling  iffy herself. Her nurse had been taken away. I loved her nurse. She was left with a grumpy nurse substitute. She had a waiting room full of veterans waiting to be seen.

 For me she has ordered a TENS machine, took care of reorders, got caught up on my melanoma, sent a consultation to vascular. And then see you in three months. VA doctors love to send me to other doctors and love to send me equipment.

I now have a medical cannabis card.  With this card I don’t pay the cannabis tax. I can buy double the strength and stronger. I can also grow my own marijuana.

My Presbyterian primary filled out the form for the medical cannabis card. When I got home, I signed the form emailed to me, I was quickly approved and that afternoon I had a digital medical card on my phone.

My rheumatologist works at the VA so she couldn’t file the form. A doctor is available at the cannabis dispensaries. Doctors are available online to sign an application. Their fee is about $100. Your regular doctor will not charge a fee.

Besides the fifth cancer and RA, I am also going blind. My left eye has only blurry peripheral vision. My right eye  has a cloud that is gradually expanding into my central vision. I can no longer see the menu in a restaurant or read the tag of a nightgown in Kohl’s.

My vision has always been affected by my RA. When I have a flare, my vision becomes blurry and I cannot read. Eye involvement is not uncommon in those with RA. My rheumatologist never discusses RA eye involvement . I’m not sure why. I think it’s because she  sees your eyes as the domain of eye doctors.

Francis met up with a big black neighborhood cat for the first time. They had a staring contest. The cat moved to the steps and continued the staring contest while Francis barked. Our backyard animals including the quail and squirrels usually ignore Francis. He doesn’t mind. He was happy to tell the cat to go away. Not her house.

Book and cannabis report

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My new book, Living with Rheumatoid Arthritis   is available in Kindle Unlimited as well as available for purchase on Amazon.

My old nursing school friend, Florence, read my book. She had so many kind words for me, I’m almost blushing as I write them. This is what she had to say: 

“Just finished your amazing book. Not only are you one of the most courageous individuals I have ever known, but you are a gifted writer as well.   Your book is a valuable work of hope, courage, and very extensive information about a devastating disease; a gift to others suffering from RA.”                                                                                                                                                                                                                                   I appreciate her kind words. I’m sure in her practice she saw what rheumatoid arthritis can do to a person. Medicine has changed and still has not changed. RA is still devastating for many.

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RA never goes far.

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My son has done all the cooking this week. He also  has done the grocery shopping. I told him the bonus for the cook is that he can cook what ever he likes to eat. He likes salads and makes them well.

Saturday is movie night. Francis always knows and stands guard at the front door. We ordered dinner from Red Robin and settled in to watch the new Flash movie. Erza Miller is a talented actor. I enjoyed him in the first Fantastic Beast movie. He was good in this movie too. The director went a little overboard. I felt like I was in Dante’s ninth circle of hell and their goal of saving mom got lost in the mix for a while. Still an enjoyable movie.

I am still recovering from my melanoma surgery. I developed a bloody leak in the wound so now my son packs it daily with iodoform. It is slowly getting better.

In Albuquerque no matter how hot it has been September  changes us to fall weather. Cooler nights. Daytime temperatures gradually slipping down the scale. Our summer monsoon became short splashes of rain. Now gone. We are dry.

Kevzara and CBD with a small bit of THC helps my RA. I did have a bad flare last week. It is the inflammation that gets to me. I take extra Medrol which helps plus Tramadol and one regular dose Tylenol. For ten years my Doc has warned me of the dangers of steroid use. She is right but, in the end, it is the steroids that help the most.

Living with RA

Cancer, from RA ?

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My surgery is scheduled for next week. Malignant melanoma. Clearing the tissue near the biopsy site. I am worried. Melanoma is 2% of all skin cancers. It is 70% of all skin cancer deaths. It is easily cured if caught early. Mine was not caught early. It grew unnoticed on my back. The worry of metastasis starts when the cancer is deeper than one millimeter.  Mine was 1.5.

Rheumatoid arthritis is associated with lung cancer, lymphomas, and skin cancer. I belong to the group that always seems to get the longshots. Since this is cancer number five, I’m worried that my number is up.

Since mine was deep, it may have metastasized. Lungs. Bones. Brain. GI system.

The surgical procedure includes mapping the sentinel node. This is done in nuclear medicine. Needles are inserted in my back to highlight the location of the lymph nodes. The surgery is done under general anesthesia. The incision is deep and wide. Some require a skin graft. If there is cancer in the  sentinel node, it will be excised along with nearby lymph nodes.

I may wake up to metastatic cancer. Treatment may involve further testing in the areas most likely to be growing the cancers.  Depending on my particular case, treatment may include immunotherapy, targeted drug treatment, chemotherapy, radiation, and gene therapy, such as with Braftovi.

I have spent plenty of time worrying about my future with this cancer. It is time to stop.   I have other issues to deal with. And as we know well, life does go on most of the time.

Cannabis still works

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It was 104° here in Albuquerque yesterday. It will be the same today. Weather that is in the 100s is normal for July. What has changed for us is the nighttime temperature. Even with a 100° day, the nighttime temperature was usually in the 60s. Not anymore. Last night it was 95 at eleven. Big change.

I am struggling to set up an author’s page for my two books. The site is on Bluehost who tries to sell you every possible app even before you write one page. So slow going plowing through their ads.

I continue micro dosing cannabis gummies. I bought a little pill box for my slivers of gummies. I keep it in my pocket and take one every hour.

It does feel like a miracle. I still have many damaged joints, but the inflammation is dramatically reduced. I feel so much better. There must be a link between cannabis and RA.

Buns, Bratwurst and Cannabis

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Yesterday, I made buns in my new bread machine. Not the whole thing. I made the dough. Shaped the rolls. Baked  in the oven. Easy. Much better than store bought. Bratwurst with mustard and then today hamburgers on my grill.

I look out to see it still sunny. 92⁰F. Our daytime temperature is normal. The big change is nighttime. Our normal temperature at night in the summer is in the sixties. By morning it is usually down to high fifties. Nice to leave windows open at night. Not anymore. Last night at ten it was still 90⁰F. It makes a big difference in the cost of air conditioning.

May was a bad month for me. Actemra completely failed. My flares were severe and endless. I started cannabis. Erred on too much. It made me sick. So back to starting over.

 I started microdosing cannabis gummies. Wana Quick Strawberry Margarita 1:1, hybrid ten milligrams THC and ten milligrams CBD. I use scissers to cut the gummy into six pieces and then eat one piece every hour. So I use two gummies in the course of a day. I have pain relief but no side effects.

Wana is a company from Boulder, CO that has been recently bought out by a Canadian businessman for $330,000,000.

Nurse Mary’s Notes Living with Rheumatoid Arthritis

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The first three words, Nurse Mary’s Notes, were to be a common heading in a series of books. Still nice to have it up.

My book, Nurse Mary’s Notes Living with Rheumatoid Arthritis. Look through the table of contents to see all the topics covered. Hopefully, you will find something helpful.