Rheumatoid Disease Morbidity and Mortality Part One

Rheumatoid Disease, also known as Rheumatoid Arthritis, carries with it a myriad of symptoms, comorbidities, and increased mortality rate.

Rheumatoid Disease Ribbon

In a Facebook group, someone recently commented that Rheumatoid Disease is a death sentence. As in most social media, people jumped on her and blasted her for saying it’s a death sentence. However, it can be. Most of the time it’s not, but many of the complications are serious, even life-threatening, and it’s important to not ignore these. I’m going to focus on the lung complications for this post. In later posts, I will focus on other body systems and serious complications.

Lungs

Lung Disease

Several lung conditions occur in Rheumatoid Disease. Most are caused by inflammation including pleuritis, pulmonary fibrosis, pulmonary rheumatoid nodules, and interstitial lung disease.1https://rheumatoidarthritis.net/symptoms/lung-diseases-and-conditions/

Pleuritis

Pleuritis or pleurisy  – the pleura, or the sac surrounding the lungs, becomes inflamed, and often fluid builds up in this sac – pleural effusion. The symptoms of pleurisy include pain with respiration. A pleural effusion can cause shortness of breath including pain on breathing. A large pleural effusion can be an emergency.2https://www.mayoclinic.org/diseases-conditions/rheumatoid-arthritis/expert-answers/rheumatoid-arthritis/FAQ-20058245

While treatable, complications may arise from a pulmonary effusion. If not treated early, it can cause permanent scarring of the lungs.

If you have symptoms of pleural effusion, you should seek medical attention as soon as possible. One study has shown that as many as fifteen percent of people admitted with a pleural effusion die within thirty days of admission.3https://www.healthline.com/health/pleural-effusion

Pulmonary Rheumatoid Nodules

Pulmonary Rheumatoid Nodules are small lumps. They can also develop in other areas of the body and will be addressed more in-depth in a separate post. They usually have no signs and symptoms however they may rupture and cause a collapsed lung.4https://www.mayoclinic.org/diseases-conditions/rheumatoid-arthritis/expert-answers/rheumatoid-arthritis/FAQ-20058245

Interstitial Lung Disease

ILD, or interstitial lung disease, is a group of disorders that cause inflammation and scarring when the immune system attacks the lungs. It’s hard to diagnose because the symptoms of a dry cough and shortness of breath don’t show up until extensive damage is done. It’s estimated that one in ten people with Rheumatoid Disease will develop interstitial lung disease.

Those who are diagnosed and treated early may be put on the waiting list for a lung transplant sooner.

ILD is difficult to diagnose and difficult to treat. Once it’s diagnosed, the life expectancy is 2.6 years.5http://www.arthritis.org/about-arthritis/types/rheumatoid-arthritis/articles/lung-disease-rheumatoid-arthritis.php

While the lung complications aren’t common, they do happen. It’s important to know and recognize the symptoms. The earlier lung complications are treated, the better the outcome.

 

 

 

 

 

 

 

 

 

Autoimmune Life

What’s it like to live the Autoimmune Life?

Some days living with an autoimmune disease isn’t so difficult. I can still have a life. Maybe I can’t hike through the Big Bend, raft down the Frio or climb the hills of the Texas Hill Country, but on those rare days, I feel almost normal. Almost. I can go to dinner with friends, do a little shopping, or have family and friends over.

Then a flare hits.

Flu-like symptoms – Fever ranging from 99 to 101. Indescribable fatigue worse than when I worked all day and studied all night during my college years. Waking up ever more tired than when I went to bed. Exhaustion without sleep. When I do sleep, I wake even more tired than I was before I went to bed.

Pain radiating from hot, swollen joints that feel as though a jackhammer is inside each one trying to destroy it. As the inflammation worsens, the use of joints becomes more limited. Pleurisy that hurts with every breath can also join the myriad of symptoms.

During flares, my husband helps me dress and undress. Sometimes he helps me off the toilet and out of my chair.

Then I start prednisone. It causes mood swings, hot flashes, difficulty sleeping, sweet cravings, and a generally crazy feeling. But it helps the symptoms. It interferes with sleep but does decrease the pain, fever, and other inflammatory symptoms.

While I always have symptoms, they are much worse when I’m flaring. The time-span between flares varies. Sometimes I got from one flare to another.

Despite the disability of living with an autoimmune disease or multiple autoimmune diseases in my case, I do have a blessed life. While I can’t do many of the things I would like, and I frequently have to rest or nap during the day, I have a family who loves me.

 

Mobility Devices: Canes, Walkers, Wheelchairs, Scooters, and the Like

Scooter

Mobility Devices Do I need one?

Deciding when to use a mobility device is often difficult – especially when your physician doesn’t mention it. You may often find yourself questioning as to whether you should continue to push yourself. After all, wouldn’t your rheumatologist suggest using a cane, walker, scooter, etc if you really needed it?

Canes

To determine if you need a cane or not, think about these things. Do you have pain on one side of your body? Weakness on one side? Do you need help with balance? 1http://www.aafp.org/afp/2011/0815/p412.html Or do you hold to furniture and walls as you walk? If you answered “yes” to any of these questions, a cane might help you.

Walkers

Walker

If you have balance issues, you may need a walker. When you’re off balance, a cane usually isn’t enough to keep you upright when walking, but a walker, either one like the one pictured or one with the four wheels may be what you need to help you keep your balance.2http://www.aafp.org/afp/2011/0815/p412.html Also, if you it exhausts you to walk very far, and the more you walk, the higher the risk of stumbling, you might opt for a walker with a seat.

Wheelchair or Mobility Scooter

Scooter

But I can walk? Isn’t it wrong for me to use a wheelchair or a scooter? No! If you have low stamina, difficulty walking distances, or if you have trouble managing a walker or cane, you may need a mobility scooter. This is also a good option for those on oxygen or with chronic joint pain.3https://www.verywell.com/do-you-need-a-mobility-scooter-1094636

When shopping for groceries, walking the mall, going to a museum, or going to a theme park with your family, are you relegated to waiting in the car, or sitting on the sidelines because you can’t walk distances? If so, you might want to think about using a wheelchair or a scooter.

Wheelchairs and scooters can provide incredible freedom for those who have fatigue and pain from autoimmune diseases. Bus systems and taxis must provide space for your scooter or wheelchair, so using public transportation is an available option.

Medicare and some insurances will pay for a scooter if your physician signs off on the paperwork. Most places that sell them can tell you what you need in order to file against Medicare or private insurance.

But My Doctor Didn’t Recommend It…

Remember when dealing with your health and autoimmune diseases, you must become your own advocate. Talk to your doctor about your symptoms. Explain that you think a mobility device would help you.

Of course, you do not have to have your doctor’s permission for a mobility device since they are sold over the counter. However, if you want insurance or Medicare to pay for your mobility devices, or you want to take the cost off on your taxes, then you’ll need to ask your rheumy to sign off.

 

 

Chronic Kidney Disease and Autoimmune Diseases

Chronic Kidney Disease and Autoimmune Diseases

Kidney
Image courtesy of hywards at FreeDigitalPhotos.net

Chronic Kidney Disease affects thirty million people. Think about that number. It’s equivalent to 9% of the population of the United States. Many more people are at risk of developing CKD.

The causes are varied, but the leading causes are hypertension (high blood pressure) and diabetes. For those who have autoimmune diseases, the causes can range from the disease itself (for example, Lupus Nephritis), to comorbid conditions (coexisting diseases) like hypertension or diabetes to the treatment for the autoimmune disease.

Types of Kidney Disease

There are two types of kidney disease. Chronic (CKD) and Acute. In this post, we are concentrating on CKD because that type of kidney disease has long-term consequences. Acute Kidney disease is treated in a hospital setting as an emergency.

Prevention

One in three adults is at risk for developing chronic kidney disease. This insidious disease can develop without the victim realizing it. If you have diabetes or hypertension, work with your doctor to keep those diseases under good control. Hypertension or high blood pressure damages the small blood vessels in the kidneys. It’s the second leading cause of chronic kidney disease. Diabetes is the leading cause.

For those who have autoimmune diseases, limit the anti-inflammatory drugs such as naproxen, ibuprofen, etc to the prescribed amount. These drugs are eliminated through the kidneys. Overuse of the drugs can lead to CKD.

Work with your physician to identify CKD early. Have routine blood pressure, blood glucose and/or A1C testing to identify these risk factors in addition to the autoimmune disease. This can be done by urine testing for ACR (Albumin Creatinin Ration) and blood testing for GFR (glomerular filtration rate).

Symptoms of CKD

Many of the symptoms of CKD are the same as those of Autoimmune diseases so they can be easy to ignore thinking they’re part of the same stuff you deal with off and on.

The symptoms include:

Image courtesy of photostock at FreeDigitalPhotos.net
Image courtesy of photostock at FreeDigitalPhotos.net
  • Fatigue and weakness
  • Difficult and/or painful urination
  • Foamy or frothy urine 1Lupus Foundation of American – www.lupus.org
  • Pink, dark urine (this is an indication of blood in the urine)
  • Increased thirst
  • Increased need to urinate especially at night
  • Swelling – puffy eyes, swollen face, abdomen, ankles, feet
  • Unusual weight gain – related to fluid retention.2National Kidney Foundation – www.kidney.org

Lupus nephritis

Approximately 40% of those with Lupus will develop Lupus Nephritis (or glomerulonephritis). In Lupus Nephritis, the nephrons (parts of the kidney that filter the blood become inflamed and the kidneys can no longer eliminate the toxins. They begin to build up in the bloodstream. The patient begins swell or gains unexplained weight.

CKD and Heart Disease

Heart disease is very common in CKD. If you have CKD, learn about heart disease and preventing it. Many of the same diseases that cause CKD also cause heart disease.

While the link between heart and kidney disease isn’t completely clear, it has been shown that damage to either organ affects the other one. If you develop CKD, you are much more prone to developing heart disease. 3National Kidney Foundation – www.kidney.org4National Institute of Diabetes and Digestive and Kidney Diseases – www.niddk.nih.gov

Heart disease is the leading cause of death in Chronic Kidney patients at all stages. In addition to normal cardiac risk factors, those with CKD have unique risk factors.

  • Protein in the urine (proteinuria or albuminuria)
  • Elevated phosphorus levels in the blood – in CKD the body is often unable to eliminate the excess phosphorus found in some food. As this build up in the bloodstream, it can cause de-calcification of the bones and hardening of the arteries.
  • Elevated calcium levels – Calcium and parathytroid often go hand in hand. When the calcium levels are too high, it can cause calcium deposits in the arteries.
  • High levels of parathyroid hormone (PTH) – Often in CKD the parathyroid gland produces too much of the hormone and causes elevated calcium levels.
  • Electrolyte imbalances (especially potassium) – Potassium levels must be kept within strict ranges. In CKD the kidneys are often unable to eliminate excess potassium resulting hyperkalemia (elevated potassium). Hyperkalemia or hypokalemia(low potassium) can result in the cardiac arrest (heart failure).
  • Fluid overload – When the kidneys aren’t working correctly, they fail to filter and excrete excess fluid. Excess fluid in the bloodstream places extra strain on the heart and causes elevated blood pressure)
  • Anemia – When a patient is anemic, their level of red blood cells becomes low. the red blood cells carry oxygen to the various organs including the heart muscle.
  • Malnutrition
  • Inflammation 5Davita Dialysis Centers – www.davita.com
Image courtesy of cooldesign at FreeDigitalPhotos.net
Image courtesy of cooldesign at FreeDigitalPhotos.net

In conclusion:

For more information on kidney disease, please visit the National Kidney Foundation – http://www.kidney.org

The NKF has local chapters that offer free screenings and education on kidney failure. The website contains a wealth of information on kidney disease and transplantation. They offer free memberships to the organization and online communities for those on dialysis or who have been diagnosed with CKD.

The NKF also provides information on clinical trials and how to find one that might be right for you.

Your kidneys are essential to your overall health. Know your numbers: glucose, blood pressure, and glomerular filtration rate. Know the symptoms of kidney failure, and don’t assume that any symptoms you’re experiencing are caused by your autoimmune disease. The earlier you catch kidney failure, the better the outcomes.

You Know You Have a Chronic Debilitating Disease When…

You know you have a chronic, debilitating disease when…

You miss your job and grieve over having to give up your career – often when you’re quite young. Some of us spent our last days in tears because the job was so hard and painful, but we kept pushing because we’ve heard so often that people on disability are “lazy” and other hateful comments. Often from friends.

Nurse

 

You spend all of your disability check on insurance and medicines – many of people with disabilities struggle month to month because the cost of insurance, doctors, and medications bankrupt them. After two years of being disabled (according to the Social Security Administration) the person qualifies for Medicare. Medicare doesn’t pay for any medications, and the person must pay twenty percent out of pocket. Most states don’t require supplemental policies to cover the disabled. Most, however, can obtain Medicare part D to help with the cost of medications, but it’s a guessing game to figure out which policy to choose that won’t leave the person in the lurch on the cost of expensive medications.

 

Your house looks like a medical supply store – for the days when you’re having problems with your knees or hips, you have a walker or a cane. Most of us have both. Some days you chose one, and other days you must choose the other one.

 

And then there are times when neither a walker or cane is enough… Many of us have wheelchairs and electric scooters stowed somewhere. If we go anywhere that involves much walking, the cane or the walker’s just not enough. Then, when we use our scooter in places like Disney, we hear snide remarks about being lazy, because of course, we don’t “look” disabled. What does disabled even look like?

Scooter

 

We spend so much time with doctors, you’d think we would have a great relationship with them… And many of us do with some of our doctors. Two of my many doctors who listen to me and act upon what I tell them. They don’t ignore me. Unfortunately, that’s not always been the case. Before I was diagnosed (which by the way, can take YEARS because the symptoms are nonspecific and often mimic other diseases) I was told to try things like “a high protein diet” for the fatigue that I constantly complained about. It’s hard for us to trust a new doctor. If we’re told we need to see a new specialist, it strikes fear into our hearts because we recall all of the previous times when we had doctors who treated us as though we were lying. I mean who would lie about the symptoms we have?

doctor button

 

We take enough pills to choke a horse – and often times we take pills to counteract the side effects of the pills that we take for our disease. Of course, we can opt not to take the pills for our diseases, but that leads to another set of problems.

Pills

 

Many of our medications are given through an IV, or we must learn to self-inject – next time commercials for Enbrel, Humira, etc come on TV, check out the drug. The lists of side effects are endless, the method of administration isn’t fun, and they cost a small fortune.

shot

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We’ve been xrayed, MRId, and CT scanned from stem to stern…  Since most of these diseases can affect any and every part of us, we’ve been subjected to all sorts of testing. Including spinal punctures, blood tests, nerve conduction tests, etc.

hand xray

 

Nice rash! We develop very weird symptoms. Often, they stump the doctors. We have flu-like symptoms most of the time – fever sometimes as high as 102), our brains are foggy at times preventing us from making good decisions, remembering appointments, etc. We have a pervasive feeling of being unwell. Sometimes the symptoms are actually a sign of an additional disease taking up residence because autoimmune diseases like to come in groups.

rash

 

Some of the diseases affect the spine – but those of us with the diseases that “don’t” affect the spine, know better. We’ve developed multiple disc herniations, etc over the years. Recent studies have shown that we were correct all a long. Many of the Autoimmune Diseases that doctors originally told us won’t affect the spine, recent research has proven they affect the joints and the discs of the spine.

spine

And the top way to know you suffer from a chronic, debilitating disease? You wake up more tired than when you went to bed the night before. Family and friends wonder what your problems because you’re late for church, work, school, etc. Your body is so exhausted, it doesn’t want to move. You feel like you could sleep until the end of time. Then, after you’re up a while, you hit your high point which lasts a couple of hours if you’re lucky.

Tired

 

Open Letter to Women Everywhere About Urine

Toilet without urine

 

Dear Women Everywhere:

Can we talk about public toilets? Especially those in the handicapped stalls? You know, the ones covered in urine?

Ladies Room Sign - hopefully the seat in the handicapped stall is urine free!

Handicapped stalls have grab rails for those who need help getting up and down or to transfer to the toilet from a wheelchair or scooter. It’s gross to open a handicapped stall door and find a seat covered in urine.

Both those who cannot stand without the grab rails and those in wheelchairs cannot hover over the toilet seats. Businesses install handicapped stalls for handicapped women who must sit on the toilet seat.

I understand that most of you are appalled at the thought of your precious little bottoms hitting the seat. I get it. Really I do. In fact, I line the seats with toilet paper or use the provided covers. What I don’t get, will never understand, is why women who ARE NOT handicapped choose to use these stalls. You hover over the seat and urinate all over it. Do you realize the handicapped person must clean up your nasty mess before she can use the facilities?

It never fails when I walk or roll (depending on the day) into a ladies room and open the handicapped stall, I find the seat covered in urine. Some discourteous woman hovered and peed all over the seat leaving a mess I must clean up with only toilet paper or paper towels in my arsenal since I don’t carry bleach everywhere.

Please, in the future, if you must hover and pee, use the regular stall. Save the handicapped ones for people who must sit. Leave the toilet quasi clean for those of us who have no choice but to sit. Or at the very least, clean up your urine.

If you think this only bugs handicapped people, think again. Here’s a link to someone who blogs about urine covered toilets: Pet Peeves: Women Who Leave Urine on Toilet Seats This blogger even includes a nice little photo of a urine covered toilet seat.

Handicapped women have enough trouble getting into a handicapped stall when moms of little ones use them because they’re larger. When you also use the handicapped stall because you can hold onto the grab bars to help you hover, it not only makes a nasty mess, but makes us wait for you to finish your business. Please stop! Think about the handicapped woman who follows you.

In one instance in Disney World, I was so sick of cleaning urine from the handicapped stall, I get loud about it. I stood with my cane (after leaving my wheelchair outside because I needed to move a little) waiting for the handicapped stall. A woman walked out leaving pee all over the seat. I looked inside and while she was still in hearing range, yelled, “THAT’s DISGUSTING!”

I will leave you with this final plea: Please, please, please do not use the handicapped stall if you must hover! I’m not asking you to quit hovering to avoid touching the seat. Just please don’t do it in the handicapped stall. If you must use the handicapped stall, then please clean up after yourself. The next person may not be able to use a regular stall, and if she’s in a hurry, she either sits in your urine, or risks peeing herself while she cleans up your mess.

 

 

 

Disabled or Not? Part Two

In my last post, I discussed how someone can look fine, yet be profoundly disabled. I shared my story of living with autoimmune diseases for many years.

Church

Today, I would like to discuss what those disabilities cannot do. They cannot:

  • Steal my faith or my joy. Yes, I have days where I get down because of the changes in my life. However, I still have joy. The Bible tells us we’ll have troubles. Jesus never promised that our lives on earth would be pain-free, but He does promise to walk through the valleys with us. “I will never leave you, nor forsake you.” Since my trust is in Christ, my joy rests in him also.
  • Rob me of laughter. I choose to laugh every day. My husband cannot go a day without making a joke. Even in troubled times, we laugh together. No matter the situation, we can find a sliver of happiness and laughter.
  • Snatch love from me. I know people who’ve had spouses leave them over their diseases, and I’m not making light of that, but disabilities cannot steal the love of my family. Mostly, it cannot steal the love of my Lord. He’s promised to love me forever. In fact, “love” is one of the most used words in the Bible. Disabilities cannot steal my love for others. Jesus commanded us to love others – including our enemies. Having multiple health issues isn’t an excuse to not love others. Hurting and feeling bad doesn’t give me a pass on reaching out in love.
  • Change who I am. Health issues may change the things I can do. I may spend more time sleeping, and more time recovering from activities, but they cannot change who I am. My inner being. The part of me God created, illness cannot change.

Yes, I’ve lost much because of my chronic illnesses, but I’ve also gained much.

  • Patience – waiting for medical procedures and insurance is teaching me patience. While I’m still not nearly as patient as I should be, I’m learning.
  • Understanding – As nurse, when I first became ill, it gave me more empathy toward my patients. Now, I try to have more empathy towards those who don’t understand. When I have friends who make hurtful comments, I remind myself that they don’t understand what I’m going through. At times, my understanding flies out the window, but I’m trying to be more understanding and forgiving of others.
  • To be still. I used to stay on the go day and night. Being still was foreign to me. I didn’t know how to sit quietly and just be still. I didn’t want to be alone with my thoughts. Now, I’m learning to sit still and listen, but I’m better. God tells us to be still and listen to Him. I’m still working on sitting quietly and just listening to Him but having a chronic illness is teaching me to sit still.

I’ve been guilty of saying, “I have no life anymore.” Yet, nothing could be further from the truth. I have an incredible life. It’s changed drastically over the years, and I can no longer do many of the things I used to do, but I still have a good life.

Years ago we went on a cruise, and I chose shore excursions like climbing the Dunn’s River Falls or parasailing. ParasailingDunn's River Falls

Now, if we go on a cruise or a trip, I choose things that are easier. We took an Alaska cruise, and we didn’t go on any shore excursions. I used my scooter, and we explored the towns. While we didn’t spend long at any stop because I tire easily, we still had fun. Alaska

We spent a lot of time watching out our balcony windows and saw many beautiful sights like whales and icebergs.

IMG_1198 IMG_1648

My life has changed, but it is still a good one. God has richly blessed me in many ways. My prayer for you, if you find yourself with a chronic illness, is that you would look outside of the disabilities and see the good, beautiful parts of life that are left. The sunsets, the flowers that bloom in your neighborhood, the sound of the birds calling to each other in the trees – – find joy in the small things.

Disabled or Not

Scooter

Disabled or not? I’ve often heard people comment this person or that person doesn’t “look” disabled. What is a disabled person supposed to look like?

If you saw me outside of the house, you might think I don’t look disabled. After all, I walk with help of a cane, but then many people use canes. I try to wear makeup most of the time when I leave the house, but often, I’m too tired or feel too yucky to bother with it, but I if you ask me how I’m doing, my response is, “great”.me

I respond this way because I doubt you care to hear about my struggles. But when you make careless comments about someone who doesn’t look disabled and call them fat and lazy, it hurts.

For many years, I struggled with Rheumatoid Arthritis (RA). I was diagnosed in my late twenties, and I continued to work as a nurse. Being on my feet for hours on end. Taking call and going out at all hours night and day. With an autoimmune disease like RA, fatigue is overwhelming, so I was often too tired to do much other than work, but I continued because I still could. I pushed through the pain and fatigue.

My treatments over the years changed. I started with Plaquenil. I took it for several years, and it helped, but I had a major flare and the doctor added Methotrexate and Prednisone. This drug regimen continued for several years. I gained substantial weight on the Prednisone  and developed a “moon face”. In spite of the side effects of these drugs, I pushed through the pain, side effects, and fatigue and continued to work.

During this time, the rheumatologist diagnosed me with Raynaud’s syndrome. This disease causes the blood vessels in the hands to spasm in response to cold or stress.

RaynaudsRaynauds

This syndrome causes the hands to turn red, white, and blue. As you can see in these photos, the syndrome caused my fingertips to blanch to white. When they do this, the fingers become very numb and tingly. It can become serious enough to cause severe damage to the blood vessels, sores on the fingers, and even loss of digits.

Next, I developed a sensation down both arms when I would bend my neck. It felt like electric shocks running down my arms. I mentioned this to my rheumatologist. She took X-Rays of my neck and sent me for an MRI. Before I had the MRI, she called and said I needed an appointment with a neurosurgeon as soon as I completed the MRI because the X-Ray showed some severe changes in my cervical spine.

After the MRI, I met with the neurosurgeon. He said I had two vertebrae that needed fusing ASAP because they were impinging on my spinal cord. Within a couple of weeks, I had the surgery. I continued to work part-time with my neck in a hard brace. It looked similar to this drawing.
Julia Braced The brace was hot, uncomfortable, and had to be worn 24 hours a day. I even had to shower in it. I could only take it off to change out the soft inside pads to dry ones after a shower. It doesn’t show here, but the back of the brace came up to the middle of my head. No way to style or dry hair. I couldn’t go to the hairdresser because she couldn’t get to the back of my head. I wore the brace for about six weeks.

A year later, I had another level herniate that needed fusing. So, once again, I was in the hard brace 24 hours a day.

During all of these changes to my health, I also started on Remicaide for the RA. After a year or so, I failed it, and I started on Enbrel.

Next, the Plaquenil started affecting my vision. Luckily, I was getting my eyes checked as often as recommended and my ophthalmologist caught it quickly. I stopped the Plaquenil and my vision returned.

At some point, I developed severe side effects to the Methotrexate and my rheumatologist stopped it and started me on Arava.

For several years, I had ankle pain that wasn’t improving. My rheumatologist sent me to get an MRI which said I had a chronic sprain. He then sent me to physical therapy. My therapist asked to see the MRI report. After she read it, she told me I had chronic sprains and some tears in almost every tendon and ligament in the ankle. All caused by RA.

Because of the chronic ankle pain, which did improve with therapy, I cannot walk more than a short distance. This reduced me to using a scooter for traversing distances.

My stepson loves to go to Disney World, so we take him often. I always use a scooter (in fact, I now have my own because I need to use one frequently). My days at the park grow shorter and shorter with each trip. I always go back to the room several hours before my family. I fear the day is fast approaching that I won’t go to the parks at all. I’ll hang out at the hotel while they enjoy the parks.

When we go to San Antonio, we must take my scooter even though we don’t spend much time hanging around downtown or on the river. I also must take it on cruises, because I cannot walk the distance on even a small ship.

I went on several years with no further complications, but I continued to have pain daily and severe fatigue. The fatigue isn’t a normal tiredness. With fatigue from autoimmune disease, you wake in the morning more tired than you were then night before. It’s bone-deep exhaustion that at times feels like your legs are too heavy to take another step.

After years of struggling to work, I decreased to part-time. When that became too hard, I went to PRN.

Next, I began having some memory loss, and increased neck pain and tingling sensations on my face, shoulders and arm. Along with these sensations, I began having dizziness and frequent falls. Multiple times per day. I had always fallen easily and fell many times at work. At the airport. You name it, I’ve probably fallen there, but the frequency increased.

I went to my neurosurgeon, and he did another MRI. It showed some additional herniations, but not severe enough to need surgical intervention at that time. However, he was concerned about the odd sensations, falling, and memory loss. He sent me to neurologist. At this time, the memory loss was to the point, I did not feel safe working any longer.

The neurologist did MRIs of my brain, cervical and thoracic spine. I had lesions in the brain that he felt might be due to Multiple Sclerosis. After much more testing, including a lumbar puncture so he could send some of the cerebrospinal fluid to the lab, he couldn’t decide if I had MS or not. With my other multiple medical conditions, he wanted me to see an MS Specialist.

Off we went to San Antonio to see her. After evaluating all of the testing, me, the MRIs, the lab results, she determined that I did not have MS, but I have an MS-like syndrome brought on by the RA. She said one of the lesions affected the memory center of the brain.

She and my rheumatologist worked together to choose a medication that would help prevent lesions, and treat the RA. So I started on Rituxan. It’s an IV treatment that takes six or more hours to administer. The neurologist continues to follow me and does periodic MRIs of the brain and cervical spine. When I asked her if the memory loss would improve, she said, “no”.

While I have no new brain lesions, the cervical spine has continued to worsen.

The dizziness continued to worsen, so the neurologist sent me to a neurotologist in San Antonio. When I first went, they thought I might have Meniere’s disease. Once they finished with extensive testing, they determined that I have vestibular migraines in addition the chronic migraine headaches, and ocular migraines. The vestibular migraines cause a sudden onset of severe dizziness. Depending on the severity of the dizziness, I may stagger around or I may fall to the ground if I try to take a step.

In addition to these things, I have trigeminal neuralgia. It causes severe, stabbing pain in the side of the face. I developed the condition in my thirties, but it’s continued to worsen over the years, which is common.

These are the conditions that contribute to my disability. I have several others that don’t play a part in me being disabled.

Many of the conditions I discussed above continue to worsen. I will require more neck surgery at some point because the discs are impinging on the spinal cord a little, but they will worsen. The RA can attack the heart, lungs, eyes, blood cells…in other words, systemic RA can wreak havoc on the body.

My drug box contains many more medicines in it than most ninety-year-olds.

If you read this, thank you for taking the time to try to understand that someone who doesn’t “look” disabled, may very well be severely disabled.

 

 

 

Dizzy Blonde

Dizzy

For the last year or so I’ve been battling with intermittent dizziness. Sometimes to the extent that I couldn’t stand.
I never know when the dizziness will hit or how long it will last. It’s been quite a challenge. When the neurologist reviewed my brain MRI, she couldn’t find a reason for the intermittent dizziness, so she sent me the “dizzy doctor” – a neurotologist.

My primary care physician was concerned that I might have Ménière’s disease. When I saw the dizzy doctor, I told him of my PCP’s concerns.

He asked me a million questions. One of the questions was about migraines. I told him I used to have migraine headaches years ago, and I now have ocular migraines. An ocular migraine is where you have visual disturbances without the headache.

Since I have ocular migraines, the doctor said I was much more likely to develop vestibular migraines. I had never heard of vestibular migraines, but he explained that they affect balance and cause dizziness.

He started me on a migraine diet, but wanted to do some more testing. After the testing, because there were some abnormal results in one of the tests, he sent me for an MRI of the brain with the internal auditory canals (IACs).

The MRI came back normal. No tumor on the auditory nerve, so that’s good. I go back to see the dizzy doctor in a month or so and we’ll see what his final diagnosis is, but I would bet he says I’m having vestibular migraines.

I’ve been a nurse forever and this was the first I’d ever heard of vestibular migraines, but I’ve never been one to do things the easy way.

Happy New Year!

 

Happy New Year!

Happy New Year!

Happy New Year! I hope if your home is snow covered you’re staying warm.

I took this photo in Telluride last February. It was fun to watch the skiers, but I felt a longing for the life I used to live. The one before autoimmune diseases when I could run and play.

As the new year rolled around, I decided to focus on the good things in my life instead of the changes. You see, I’m very blessed. In spite of limitations and disabilities that are frustrating, I have a good, full life.

So often I focus on what I don’t have. For me, it’s rarely the beautiful new home, the new car, diamonds, etc. I often focus on the abilities I no longer have. Before I got sick, I earned my black belt in Tae Kwon Do. When I’m having a bad day, I tend to focus on what might have been had I gotten sick.

I loved sparring and won several tournaments, but I started getting ill right before I earned my black belt. By the time I received it, I could no longer compete. In fact, I could no longer practice. It caused too much pain.

This year, however, I plan to focus on my abilities. What I can accomplish in spite of my disability. My life has changed, but I still have a good, blessed life. It’s time to focus on the blessings. I have a good life and instead of lamenting what might have been, I want to focus on what is.

Will you join me in focusing on what you can do this year? I would love to hear your stories and how you’re changing your focus and making the this year the best ever!