Update: physical therapy for my legs has been going well though it’s a slow process. Lupus can react to any type of stress whether good or bad and it may not make sense. For instance, the first few weeks of therapy my wrists were very painful, and hands were swollen though the work was mostly my legs. The pain in my hands have made it difficult to accomplish simple tasks like writing this blog and working. It has recently subsided with a little help from Prednisone, so I am back in business. Lupus has been active for a while, so it seems that my current treatments are not effective anymore. Therefore, Benlysta will replace my current treatments. Unfortunately, it will require one shot a week and monthly labs to ensure it does not affect my organs, but it is worth a try. Stay tuned.
By the way...
There was great relief to learn that what I was experiencing had a name, Lupus. However, I was not prepared for the plethora of other issues that arose due to Lupus or its treatments. Every time something new happened, the doctor would often say, “oh, by the way, people with Lupus often get that.” It would have helped me mentally to know that these things existed and that they may happen to me rather than waking up to something new and unpleasant then scrambling to figure it out. Keep in mind, that my story encompasses a time when there was little to no information about Lupus or its associated issues. We read old medical library books, traveled to medical conference and used good old snail-mail (with stamps and everything). The Lupus Foundation and the National Organization of Rare Diseases sent us pamphlets, but unfortunately, we tended to learn things through experience. However, we were never told how Lupus could affect my appearance, increase the susceptibility to contract other issues, or that certain medications carried serious short and long-term side effects.
Lupus can affect a person’s appearance in many ways like rash, hair loss, weight gain, weight loss, bloating, swelling, and deformity. It may seem vain to discuss appearance, but it is difficult to watch my body fail regardless of how hard I try to maintain it. As Lupus attacks connective tissue, the joints begin to move out of place causing disfigurement. Muscle will help hold things in place which makes physical therapy and light weightlifting an important part of life now. My hands show the most evidence of where the connective tissue has dissolved (for lack of a better word) causing my fingers to move out of their appropriate positions or lock them then in place. Had I known this was a possibility, I may have started certain exercises earlier in life.
The Malar rash is one of the most common signs of having Lupus. The Malar rash is often called the Butterfly rash given the shape that it takes on the face. The rash if different for each person with Lupus and can also differ in severity. Acne often accompanies the redness of the rash which can leave scars. For me, the acne was more like an infection which often required antibiotics or a dermatologist’s intervention. Rashes can occur anywhere on the body like legs, arms or torso. During one of my Lupus flares, the rash appeared on my legs which left dark scars and took about two years to fade. Other rashes look more like a raised welt that can be itchy though these often occur if I eat one of my trigger foods or are under too much stress. They may appear anywhere there is skin. The sun may affect a person with Lupus and/or their skin though the severity and what manifests differ for each person. For instance, for me, too much sun may cause tiny clear fluid filled blisters to appear on my chest (not a third-degree burn) which reabsorb painlessly. Sunscreen and shade allow me to enjoy summer months without blisters though sometimes the high humidity will trigger them. The funny thing about staying out of the sun is that I desperately need sunshine for my bones.
Alopecia (hair loss or thinning) is another condition that can be associated with Lupus. Medications often worsen the condition due to their side-effects. Lately, it has been more of annoyance than in years past. One can assume that the normal process of aging has caught up to me adding to the issue. In the past, a wavy perm helped create a fuller-looking head of hair, but I have outgrown the style and have some pesky greys that need attention instead.
Sjogren’s syndrome is another condition that can be associated with Lupus. Sjogren’s causes dry, red eyes, dry mouth, ulcers in the mouth and difficulty swallowing. It also causes many of the same symptoms as Lupus such as joint pain and stiffness. The red, dry eye often caused my body to continually create tears. The dry mouth has caused ulcers and many dental problems. In the early years, the dryness in my mouth caused tiny cracks in my teeth. One of my front teeth had a slight crack which I left alone only to see the corner break right off. Thankfully, the dentist was able to file it down making the tooth even (though the one next to it now looks larger). However, every time the dentist fixed a crack the worse tooth became eventually leading to crowns. It was an extremely frustrating endeavor because dentists always assumed that I had not taken care of my teeth which was far from the truth. By the time, the dentists (or orthodontist) realized I was telling the truth, we would move. The ulcers were like large canker sores which could be healed easily with a prescribed dental paste. To this day, acidic foods or other food items will burn my mouth and tongue like too much Italian dressing.
Raynaud’s phenomenon causes numb (blue) fingers, nose, and toes, as well as a sensitivity to cold (for me). It can cause a lack of blood supply thus a change in the color of skin. My fingers have been the most affected by this phenomenon though in most instances, was easy to remedy. However, this was not true when it came time to change any setting in my last car. It had a large (iPad sized) screen which did not recognize my cold fingers. This caused me to take my eyes of the road too often, just to change a setting, like the heat. Thanks to Michigan weather changing drastically from day to day, I once went to work with the heat on high on a 70-degree day because I couldn’t change the temperature. The cold here in Michigan is a struggle and I feel every bit of it. There are times when the cold stings my arms even in a warm house under a blanket. My toes are just a loss at this point, they hurt with the thought of cold. Staying busy and keeping that blood circulating is the key to preventing or curing this ache. The cold also affects my inner ears, especially in a cold wind. It is not terribly painful but will cause one heck of a headache. I’ll be the one at the cider mill with a fuzzy winter hat or earmuffs when others still have on shorts or long-sleeves.
By the way... Lupus makes people susceptible to contracting other diseases or illnesses. My body (Lupus) is so busy fighting itself that it leaves the rest at risk of contracting a disease or illness. One such disease came in the form of Shingles which occurred shortly after a hysterectomy. I went for my post-op check-up in the same building where children were seeing physicians for a local Chicken Pox outbreak. I did not get the Chicken Pox because I had them as a child, but it is what led to a Shingles outbreak. Shingles attacked the left side of my face, eye, and scalp. Yes, I said eye. Lupus also joined the party which caused excessive swelling in the other eye thus I spent three days unable to open my eyes at all. We had multiple trips to the ER due to the pain, dizziness and nausea. I learned very quickly how to move about the house without sight. Thankfully, my sister was able to fly in to care for me on day four. The right eye was swollen shut for three days but the eye with Shingles was swollen shut for eleven days. However, it caused Glaucoma which is an increase eye-pressure and is also quite painful. It took about two months before the Shingles healed and my eyes returned to normal. Although, there is a scare on my eye which ophthalmologists see in every eye exam. That experience gave me a new respect for those who are without sight. It was very difficult to do a simple task like make tea. Had I known that it would be so easy to pick up an illness, I would have been more careful. Too bad masks were not a thing at that time. Looking back, I realize now that a mask and better hand hygiene would have prevented many unnecessary illnesses for me.
Many other illnesses found their way into my life over the years, though we rarely knew when or why they occurred. However, one of the worst things that found me was Guillain-Barre Syndrome (GBS). To this day, I do not remember whether it was bacterial or viral. At the time, it didn’t matter to me because the suffering was the same, but it is the first question healthcare workers ask. GBS attacks nerves which causes extreme pain, weakness, paralysis, urinary or bowel retention and potentially much more, depending on how the person reacts. For me, GBS started with some numbness in my foot then progressed to pain in my legs and back. My brother had come for a visit during the first week of symptoms and within a day, I was barely able to walk. I used two walking sticks to stay upright, but once arm weakness came, walking was not possible. Emergency rooms became a daily routine though proved to be fruitless endeavors because my complaint was pain to which they prescribed pain medicine. I would go back when the pain spread to another body part but would only be prescribed another pain medication. I returned to the ER again when breathing became difficult. I tried describing the difficulty, pain, and numbness, only to be treated like a drug seeker. I pleaded with them to listen and begged for testing of any sort rather than dispense more medication. My cries went unheard, and they placed me on the curb with my 8-year-old daughter at 4 am in the morning. Driving was out of the question because I could not feel my feet therefore the local cab company was my new form of transportation. Embarrassingly, I also relied on them to get me in and out of the vehicle. After one very painful night and very low breathing, we decided to try a different hospital’s emergency room. I told my story and its progression, so a CT scan was ordered (thinking it was a back issue). The doctors said they couldn’t help but gave the name and number of the only neurologist in the area (our house was three hours from a major hospital). We called the neurologist the next day but there were no appointments available. The reception said we could call and check for any cancellations each morning. At this point, I could barely hold a teacup, so my mother sent my sister out to help with my daughter. Thankfully, the doctor was able to see us on Monday which saved my life. The doctor performed tests on my muscles and nerves but there was no response to any type of test. He took a very large needle, put it in my calf and asked if I felt it, I felt nothing. He listened to my lungs then made a phone call and told my sister to take me to the hospital. When we arrived at the ER, the staff sent us to admissions. When we arrived at admitting, we were sent directly to a room where we were met by a team of people. Treatment started immediately and after a few days, I was challenged to walk which I gladly obliged. It took about six months and a slew of helpers who flew a long distance, to get me walking again. My daughter learned to be a good nurse though it was not asked of her. She wanted to help and even assisted in an enema. Paralysis affected my bowels which required daily enemas until they regained their functions. She was right there, wanting to help so we let her. Good times. This subject should probably have been its own blog since there is so much more to share but feel free to ask if you want to know more. Currently, I suffer from weakness caused by GBS (a post-GBS syndrome called CID). Physical therapy is helping.
Bye the way… being immune compromised also makes a person with Lupus susceptible to contracting outdated diseases from vaccinations. Because GBS can be caused by the flu vaccine, I no longer get a flu shot. Vaccines are either tiny bits of live or killed viruses that are injected into a person so the body will recognize it as an enemy and kill it before making a person sick. The more you vaccinate, the more the body will recognize the invader. COVID-19 is an anti-body rather than a bit of virus (live or killed) so there was no chance of me getting COVID unlike that of Polio or the MMR (measles, mumps, rubella) vaccines. Recently, my brother called from the doctor’s office and asked what shots (vaccination) his girls could not have if coming to my house. His wife remembered there were some that could cause me harm, so the girls only received their flu shot that day. They will get them just not when they are spending the weekend at my house. Funny thing is that I took my brother to get his polio shot when he was little, and the doctor gave him a choice. He could either take the shot and stay away from me (in the house) for about 7 days or drink the liquid and not see me for 30 days. He took the shot. The good news is that very few pharmaceutical companies make the Polio vaccine with a live virus, so Lupus patients have one less thing to worry about (in the US).
Other “oh, by the way” moments came after I suffered some form of issue from a medication. Side effects or unknown underlying issues accompany many medications. In my case, medications caused ulcers, gastric (GI) spasms, migraines, and osteoporosis. It was seven years before a doctor told me I should have been taking Vitamin D and Calcium if taking Prednisone. Long-term use causes a loss of bone-mass leading to osteopenia (thinning of bone mass) or osteoporosis (loss of bone mass). I was diagnosed with osteoporosis before my thirtieth birthday. There are medications that help increase bone mass and I have been on about four plus an infusion. The first medication I took for bone loss was taken off the market completely. Although, the drug had increased my bone mass, and I was upgraded from osteoporosis to osteopenia. However, my lumbar spine has recently been downgraded back to osteoporosis, but the story isn’t over. I have work to do but getting Lupus under control is at the forefront right now.
Migraines plagued me for two years before a doctor told me Lupus can affect the nervous system causing migraine. Certain medications can increase the severity and frequency of migraine. Mine started when on a hundred milligrams of Prednisone. I understand it was necessary and that Prednisone was saving my bacon but a little knowledge in advance would have been extremely helpful. This “oh, by the,” approach was not working for me. Patients going through any illness should be made aware of potential problems rather than have them find out after the fact. It was a scary time for us, and these migraines started before I cast my first vote. The treatment for migraine was a shot that my hubby graciously provided though now we have it in pill form. Other treatments consisted of injections into the back of my skull and testing which included the very painful spinal tap. However, I choose to take a migraine suppressant to keep them from starting rather than treat them. Knowing what triggers migraine has also helped with prevention. In addition, the aura that comes prior to migraine allows me time to treat before it gets too bad. I have a little cocktail of over-the-counter medications and caffeine that seem to do the trick (health dependent, of course). It is important to try to prevent any new issues than continue to treat as that may come at a cost as well.
The medications of my past (for Lupus), including prednisone also caused stomach ulcers and GI spasms. The first medication, Zantac used to treat and prevent ulcers worked just fine, but it too was taken off the market due to carcinogens. In today’s world, some pharmacies give out information about prescription drugs and may offer counseling. Pharmaceutical commercials also list side effects. I was very young so blindly followed advice and trusted in big pharma but now, I do my research and try to make an informed decision. The second medication, Prilosec (available over the counter), has become ineffective for my issues and is also said to have side effects that cannot be overcome. Therefore, the doctors are trying a third medication. Sometimes I feel as if medicine, in general grew up at the same rate as my medical knowledge but other times I feel like I am playing leapfrog. Regardless, had I been told that medications can cause ulcers, I may have done things differently or have tried some preventative methods rather than suffering through it and fixing the problem after the fact.
Pleurisy occurred when I was running in high school. The pain in my chest was terrible. The coach told me to run more and “do better.” It was a few years after graduation when the pain was given a name. What a relief! At that point in time, my medical knowledge was minimal at best, so my mind had filled in the blanks and imagined the worst. Once Prednisone treatments began for Lupus, these attacks subsided, thankfully.
Lupus was given the image of a wolf because it has been known to mimic other diseases which may or may not go away completely. Whenever a new issue arises, my hubby often tells me to give it a few days because he knows that by the time an appointment comes around, the issue may be gone. Once upon a time I had an allergy to Latex gloves and cheap Band-aids. My skin would look like a bad sunburn after wearing them. A latex allergy is a frustrating thing when for a person who spends most of the time in a hospital setting. But, one day the allergy miraculously went away and has not returned. I can’t make this stuff up. A few years after the Lupus diagnosis, there was an incident in which my organs were failing, and death was close. Beaumont told my mom that they did not know how to save me and that their efforts had failed. They transferred me to Botsford hospital where my rheumatologist was located, and that decision saved my life. The organ failure reversed and have been functioning appropriately with only a 5% permanent loss (thank God, fingers crossed, knock on wood). Truth be told, it has been over ten years since my last biopsy. Lupus nephritis is the most common issue with Lupus and kidneys which is what prompted the original biopsy. Kidney functions are measured at every appointment to catch any potential problem.
Lupus patients do not just suffer from Lupus. They have a myriad of other issues to contend with like. Newly diagnosed patient should be told the effects of their prescribed medications, the complications that come with having the disease, and the susceptibility of contracting other illnesses or diseases. There is so much more to this story, and I only touched on a few things, but it does prompt a little bit of advice. Be your own advocate regardless of what you have, educate yourself, and don’t be afraid to question the doctors. Ask as many questions as you can and take notes. Oh, by the way… you got this (regardless of what it is).
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