Have you ever felt stranded?

Have you ever felt stranded?  Sick …Painfully so…But did not know who to call. Maybe too sick to figure it out.

This happens a lot to those of us with autoimmune disorders. I am seeing many doctors, each a specialist who oversees a section of my body.  For me, I have a rheumatologist, an oncologist, an endocrinologist, an ENT Doc, an internist and a podiatrist. However, there is no one who looks at the total me.

This week I am in trouble. Things just are not working well enough. The protocols that are to be followed when I am in trouble are not working.  What do you do when your painful issue does not fall into the neat little slot of a specialty? When you are plainly worried that all is going to hell?  Who do you call? Unfortunately, not GHOSTBUSTERS.

Here’s what I did. Then I will tell you about my remedy for my next crisis of indecision.

It was decided through C-T scans and visits to my endocrinologist and an ENT Doc that the swollen lymph glands in the back of my head, my neck, my jaw and my face were due to my RA. Relief for me. I was thankful that I did not need to worry about doctors doing weird things to my head. But then what? My oncologist is worried about lymphoma (77x risk in severe RA). A nagging little worry. Just setting the stage here.

A few days ago my left side of my face started swelling. My jaw hurt. My face hurt as well as my ear. My face kept getting more swollen as well as more painful. I felt as if I should call the oncologist right away and demand a test for lymphoma.

However, I called my rheumatologist only to get the message no one was home.

Panic!

Called my rheumatologist again. Thankfully someone answered. The solution was at hand. Thank God!  I did not need to come right in for a lymphoma evaluation. Instead, I was given a prescription for a Medrol pack. I was told that it would solve my problem. I felt much better already. I had a solution, a plan of action.  Seems obvious doesn’t it? It wasn’t at the time.

Strong, lovely and helpful

Strong, lovely and helpful

I needed help. I needed someone who saw the whole me. My next call was to Abby. She is a Palliative Nurse Practitioner. She was able to see me today. She will provide the supportive umbrella for my needs.

“Palliative care is specialized medical care for people with serious illnesses. This type of care is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness—whatever the diagnosis.”

“The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses and other specialists who work with a patient’s other doctors to provide an extra layer of support.”

“Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment.”(Quote from brochure from Presbyterian Medical Group Palliative Care Centers.)

Abby suggested I take my Tramadol on a regular schedule with my other meds to keep my pain level under control.  She said my GI system was stressed from all my meds and wrote a prescription for probiotics. She also said I still have much processing to work through.

This is perfect for me.  Abby gave me her cell number. I now have a lifeline. I will see her again and I do have her number if I get in a jam. Lucky me. Definitely not alone. I feel much better.

Consider looking for a palliative care service to help you wade through the endless issues of a serious illness. I made the call. You can too.

A gift from heaven

When I saw his face I knew instantly that we would be a great match. He had that feisty, can take on the world look. Round face, green eyes, tabby markings in a huge Main Coon Cat.

Core re-centering. Strong and capable again. A green eyed wonder.

I saw his face on the Animal Humane Website. I met the photographer who had taken his photograph, a volunteer. I did not get that image, but it had been the one that drew me in.

I went cross town to the Animal Humane site on Virginia. I looked for him. He was not in the general cat areas. It was the photographer who found him. On his kennel was a sign: You choose your price.

He was on the higher shelf. I invited him down. He came. Gorgeous face. His body had been shaved except for his head and a big puff at the end of his tail. He was a bag of bones.  He was 8 years old, deserted and on the big decline.

I took him home. Now he eats a breakfast of fish and a dinner of Blue buffalo wild.  He happily takes any tidbits he is offered. He loves to be loved. He is a gentleman. Well behaved. His Name is Antoine.

His fur becomes fuller each day. He is no longer bony. He is strong and sturdy. He sleeps on my bed. Sits in the window in different parts of the house. Watches cats pass through the yard.

hair starting to grow

I had wanted a cat all this year. I could not get one. My friend just had to show up. Finally, he did. I am not well enough to care for  a bouncy dog nor a little kitten. Antoine is perfect for me. He gives much love and asks little. We are lucky we found each other.

Hopefully, you too find those special little things in your life that make it so worth while.

 

 

 

 

RA tools-Massage

In the proper spirit of being the manager for my RA, I thought about what tool I could use to help manage my RA.

Top on my list was massage:  Helps the pain-tense muscles to relax. Stimulates the lymphatics. And best of all is a thoroughly relaxing experience.

Today I had an hour massage at ABQ Medical Massage Therapy. It was an Oncology Massage. I have several cancers as well as RA and they do open a few doors. The massage was given by Sean, a senior student.

I was directed to a quiet room. Asked if the room temperature was okay. Offered water. And directed to disrobe to my comfort level. I go to my panties. Lay down on the table which was warm and cozy. Covered up with a sheet and a light blanket.

When Sean returned, he adjusted my head pillow and placed a pillow under my knees. Quiet music. Sean worked his magic as he worked my body into relaxation. Peaceful bliss. I felt pampered and happy.

When I was diagnosed with RA, I could not envision a massage. My body was wracked with extreme pain. It would not have been a good time.

Now that my medical team is doing all they can to manage my RA, I am doing my part with slowing down my life, managing my relentless symptoms, focusing on good food, staying in motion.

The massage was an indulgence. I had that very good feeling you get when being given a treat. Very nice. An experience each person with a painful chronic disease needs in her life.

I had decided to make the call. I showed up. I was rewarded. Try it.

This magical experience was $20 plus a $5 tip. An affordable indulgence.

I had a very good rest of the day.

RA: how to cope with more bad news

RA: how to cope with more bad news

 

For 80%, RA will be a progressive disease.

  • That means for those who are being drug managed, the drugs will eventually not work anymore.
  • That means for those lucky enough to have remissions, their disease will flare and incrementally get worse.
  • That means for those with constantly active inflammation, like myself, the disease will continue to get worse.
                    This week my bad news is that my disease is getting worse                                                                           and there are no more magic pills.                                                                                                                            And according to my oncologist, lymphoma is a big worry.

I felt blindsided. Discouraged. Tired of being in constant pain. Not interested in being a professional patient. Embarrassed about being chronically ill. Lost. My world had already crashed, now what?

What are my choices?

I could withdraw. I could become cynical. I could give up. I could be very depressed.

That sounds awful!

                       I could remember that RA is a disease that needs to be managed.                                                              I could be confident that I can adjust to my next step.                                                                                                                       I always have.                                                                                                                 The alternative to wallow is just not a choice for me.                                                                         I have been anxious, distraught, and uncertain this week.                                                                I am kind to myself and allow this mourning period. But Then…

                                                                 Enough, already!

I have an underlying confidence that I will be able to cope and then thrive.                                         I always have even though it sometimes takes a few days to re-center myself after the bad news.

I had to reacquaint myself with the concept that  RA self-management is key to RA survival.

So I revisited a favorite book.

The First Year: Rheumatoid Arthritis, An essential guide for the newly diagnosed, by M.E.A. McNeil was the first book I read after my diagnosis. I leaned many things from this book that still serve me well.

  1. Accepted that I had RA. Life needed to be lived with RA on board.
  2. Determined to do what it takes to get better. This is bigger than it looks.
  3. Manage my own disease and make a plan.
  4. Assemble my RA team understanding that I am team captain: excellent rheumatologist, pharmacist, physical therapist, podiatrist, pain management specialist, palliative care nurse plus others as needed. I consider my oncologist as part of my team.
  5. Keep a journal and a pain log. It is amazing what you will forget. These tools are helpful on many levels.
  6. Learn to accept the unpredictable nature of RA. No regrets. No guilt.
  7. Manage pain. During the times when my pain level is not acceptable, I put myself on a regular Tramadol schedule. Doesn’t get rid of it, but helps. No guilt. No worries. It is about managing my disease. When I feel a little better I go back to an as needed schedule.
  8. Keep those joints flexible and muscles strong enough to help prevent joint damage. Tai Chi, gentle yoga, range of motion exercises, light weights routine. Keep the heart and lungs going just by walking. This is tough for me as my feet can be in extreme pain. I still move.
  9. Eat as wisely as I can. This can be tough with the nausea associated with the drugs. I have found that fruit makes a good substitute for pure sugar.
  10. Massage, mindfulness and supplements work for me.
  11. Keep connected to family and friends. Reach out.

 

I clearly remember that my mind can think only one thought at a time. I am doing my part in my RA management.  I also take my pain medicine when I need it and rest as I need to.R I can now set RA aside and spend my time and mental energy on things I enjoy. I reread Preston and Child’s Pendergast series with a cup of coffee all the while feeling lucky that one of my favorite things to do is read. I do love spending leisurely time with friends whiling away the hours in good conversation.  I love living with my son.

So bad news is done and absorbed.  We all need the time to absorb life changing events. Because it is only then that we can move on.

 

Here’s an idea. It is adapted from Sandra Bullock’s movie 28 Days:

After the worst of RA fatigue has lifted, consider this. Get a plant. Keep it alive and be able to handle the maintenance. Next get a Betta fish like my Maxie. Keep it alive and be able to handle the maintenance. Next get a mature, loving cat, such as my Antoine. This is a good place to be. Enough maintenance. Big loving return. Hate cats?  Consider a mature low energy dog. Maybe a bulldog. Not kidding.

My Story

My world, slowly and then with increasing momentum, proceeded to collapse.

It started with a pain in my left shoulder. The pain was sharp.  It hurt.  Swimmer’s shoulder, I thought.  Wrong!  The pain grew throughout my body.  My hands and my wrists, my feet and my toes, my ankles and even my elbows joined in the onslaught. Inflammation throughout my body spread like wildfire. I was in total pain.

I went to urgent care. I was put on a prescription anti-inflammatory drug. The doc thought it might be polyarthritis rheumatica, an autoimmune disease.  I was instructed to see my primary as soon as possible for further testing. No luck. No appointments available for a month.

Finally, one evening when I could no longer take the excruciating pain, my son drove me to the ER.  I will always appreciate the ER and the ER Doctor.  Labs, x-rays, IV and drugs were soon being done. My sed rate was over 100.  The rest of my labs also showed massive inflammation. I was given IV steroids and pain medicine and started feeling much better as the medicines pumped into my body.  Finally, I was instructed to see a rheumatologist ASAP and sent home on steroids.

RA buttonWithin a month I was diagnosed with a severe rheumatoid arthritis, an auto-immune disease. Chronic and progressive.  I eventually felt better on methotrexate, prednisone and meloxicam. I still had inflammation and I still simmered. I had no time to dwell on my situation.

What does this have to do with cancer? You might ask. Well, it was several months later, after a CT-scan that problems with my thyroid appeared. I was sent to an endocrinologist and was told I might have thyroid cancer. I didn’t believe at the time that it was possible. I was still reeling from the RA.

A US guided biopsy proved that I had invasive thyroid cancer. I was sent to see the surgeon to plan the surgery. I was still struggling with the RA and had added Plaquenil to my drug list. I was in stunned mode but keep moving forward.

Surgery done and now on Levothyroxine for life.

cancer club thoughts

I have a follow-up CT-scan three weeks after the thyroid surgery. The results in, I am quickly sent for a mammogram and an US.    I’m given a biopsy the same day.   Two days later I was given the diagnosis of breast cancer.  You’ve got to be kidding!   First an MRI and then off to another surgeon.  I had the breast cancer surgery 5 weeks after I had the thyroid cancer surgery.

I am exhausted, in RA pain although less than initially. I have two radiation treatments to go.

This was the first year.

I had had no time to absorb any of this.

I plodded through. One step in front of the other. I had no anger, no fear, no ‘why me?’ I was in survival mode. I just needed to keep moving forward. That was all I could handle.

Next was breast cancer radiation. Complex procedure. Personally invasive.                                 My radiation experience is on my blog:  http://cancergirlnewmexico.com.                                      At http://cancergirlnewmexico.com/2014/11/11/a-marked-woman/  .   A few months later I had the radiation treatment for my thyroid cancer. That too was a complex process, but doable, isolation and all.

Within two months, I was in a cancer rehab program. I was working out, taking a ton of drugs and expected to mend. I graduated from the rehab program and had added swimming back into my exercise plan. Life was finally getting better 20 months later.

Then it happened. My RA went into a total flare. I was in severe pain.  My body wracked with pain. My feet had shearing sharp pain that made it almost impossible to walk.  This was a big shock to me. It was like getting a cancer recurrence. I knew my RA was going to keep progressing, but I wasn’t ready for it to happen now.

Then my doc dropped the bomb.  I was not a candidate for the RA wonder drugs as I was too high a risk of developing another cancer. My choices were limited.                                                    (See http://marysarthritis.com for my RA experiences.)

Leflunomide was one of the few choices left. My doc’s concern was that this medicine would be just too taxing for my liver. Another month and still in trouble. I was switched from the pill to methotrexate injections for better absorption.   Both are presently helping my RA.

CourageFinally, and this took a long time, I came to understand that the RA and possibility of more cancers will be with me for the duration. I have had to learn to manage my pain and to manage erratic energy levels. This means I am unable to take on any time consuming projects or to participate in events that last longer than I can endure. I can do short stints.

I have let go of the endless frustrations of trying to be what I once was. I no longer push myself too far. I still am able to do many things. I no longer stress out over things I just can’t do right now. I have learned to adapt.

I am an evolved me, not a new me, and I am proud of my ability to have a good life with many  new adjustments.

My life is no longer collapsing. I do know how to keep my world a happy and satisfying place. My world is a good world. However, I know for a fact, that if I end up in another downward spiral as I know I probably  will, somehow  I’ll manage and adapt to my situation. I am resilient and I am adaptable. Living is well worth the effort.

This brings me to the end of year two.

Meloxicam

 

Meloxicam is a drug I take for the pain and inflammation of rheumatoid arthritis.   I have been using it since 2/2013.   Without It,  my pain would be triple what it is.

 

  • Mobic is the trade name for meloxicam.
  • Meloxicam is a prescription drug in a class of drugs called NSAIDs:  Non-steroidal anti-inflammatory drugs.
  • Meloxicam helps relieve pain and reduce inflammation in active joints.
  • It does not stop or slow the progression of the disease.
  • The pill I take is tiny and yellow at 7.5mg. I take one in the morning and one at night. It is the maximum dose. It also comes in a 15mg pill that is taken once a day. It also comes in liquid form.
  • My rheumatologist feels meloxicam is the safest drug in its class.
  • Only one NSAID can be taken at a time.
  • I  take omeprazole, 20mg. to protect my stomach.   NSAIDs can cause stomach bleeding.  My rheumatologist says its possible to have stomach bleeding without realizing it.
  • There are contraindications or cautions to taking NSAIDs. Heart disease, elevated blood pressure, kidney or liver disorders.