It’s been awhile since I’ve written in my blog, because quite frankly I’ve been too sick, and when I wasn’t I was caring for my husband and trying to spend time with my family.
Sometimes my medications change, and I have to learn a new normal all over again. (Insert eye-roll). But first thing tomorrow morning I’m calling my Rheumatologist to let her know that I can’t handle this severe nausea, and to ask her if there is anything I can do to prevent it. Please give me something so I can l quit THROWING UP!
I’m just shocked that these tiny little pills can affect my body like this?
And let me just say, I have a new understanding toward just how terrible chemo can be. These little pills are considered chemo, but are at an even LOWER dosage than what cancer patients now use.
It sickens me to think of what my sister went through with lung cancer, and what some of my friends have had to endure. These tiny pills are so toxic to my body. When I lay in bed with my puke-bucket at my side (sorry, but there’s no other way to describe it), all I can think of is Lain (my sister and best friend). I pray out to her telling her how sorry I am that she had to endure this crap, and at an even HIGHER degree… a million times more, I would suspect. She is and always will be my hero.
So strong she was.
Which leads me to my topic today.
I have a good friend that also has a chronic disease. Although she’s never undergone chemo, she does suffer from tremendous pain, so we have each other to talk to. She came over the day after my first treatment, and I’m very thankful for her (Sebe’s) kindness and care. I can say it’s not only refreshing to have someone to talk to, but to also have someone who understands what I’m going through (to a degree, and vice-versa).
We may have different diseases, but they are both fairly misunderstood. Not by Dr.’s… but by society. We also both have invisible diseases; therefore, people can’t relate. The majority of society believes that if you look healthy, you are healthy. Which doesn’t give people who are struggling like us, a place to turn to for comfort…or to just talk. We have our Health Caretakers (Dr.’s), but when it comes to family and friends… they don’t understand, and some don’t try to.
I feel our society is becoming overtaken with Martyrs, prideful, and sympathetic people. And trust me when I say sympathy and empathy are two very different things. This leads to a lot of lonely people living in our universe.
For those wondering, the chart below clarifies the differences between Sympathy & Empathy.
Understanding what others are feeling because you have experienced it yourself or can put yourself in their shoes.
Acknowledging another person’s emotional hardships and providing comfort and assurance.
|Example||“I know it’s not easy to lose weight because I have faced the same problems myself.”||“Trying to lose weight can often feel like an uphill battle.”|
|Relationship||Personal understanding||Understanding the experience of others|
|Nursing context||A doctor relating with a patient because he or she has been in a similar situation or experience||Doctors comforting patients or their families|
|Scope||Personal; it can be one to many in some circumstances||From either one to another person or one to many (or one to a group).|
There are people suffering in our society that are being made to feel like their pain makes them weak. I’m on the flip side of that coin. I definitely don’t believe that we should live in our pain and troubles. Nor should we ever let them disable us if we’re able to control that. But I do believe that we should be able to have a voice.
I’ve always been an advocate, because things don’t change without advocacy. The reason people never express their feelings nowadays is because people shame them for being who they truly are. Or shame their circumstances.
This has put us smack dab into a world of fakes. People who no longer stand up for what is right. People who are so busy trying to paint their perfect world or sell something, that humanity has went out the window. There is more to life than painting a perfect picture on social media. There are people out there suffering who only need a kind word to make their day. They need a smile, a shoulder, and a prayer.
There are so many things that are pushed under the rug that still need a voice. And so many humans turning toward unhealthy ways to deal with their traumatic situations, that people no longer even know how to express themselves in a healthy manner. They are withdrawing from one anther. There is sickness, human trafficking, prejudices, bias’, physical and sexual abuse, different religions, etc.
We the people need to take action, and we need to quit slamming others for speaking out. We need to advocate our beliefs without hate. Without putting others down. A person who can do this shows great maturity and wisdom.
There is not a person on this earth that is perfect, but we can sure strive to live our lives with love, instead of intolerance. And we sure can live our truth, regardless of what others project on us.
You are valuable, your voice matters, you are needed, and you are special. You of all people need to remember that. Your truth is different from anyone else’s. Living your truth without hurting others is a beautiful thing.
Enough with martyrs.
We need more kindness, love, patience, and understanding. I tend to agree with Vironika Tugaleva, who says:
“When we suffer in silence, we think that we are alone, different, separate. When we share our stories of suffering, we find that we are the same.”
I believe that we need to learn how to be human again, for our sake and for the sake of our children and future generations.
Because we are worthy.
Ps. So far in this short year, I’ve missed my brothers New Years Eve party because my son had to take me to the hospital for steroid injections due to my uncontrollable pain.
And yesterday we had to miss St. Pat’s Day at my sister-n-laws, because of “me”. I took my two tiny pills Friday night after I dropped Tater-Tot (my adorable grandson) back home. Then, not to my pleasure, I spent another Friday night, Saturday & Sunday sicker-than-a-dog in bed. However, my husband and I lucked out when my sister-n-law, and brother-n-law dropped dinner off for us tonight… What a prime example of empathy, kindness, and love. We are so blessed to have them in our lives. So now that my tummy has recovered… I’m heading into the kitchen to warm up a big bowl of my sissy’s homemade stew. “Comfort food indeed”.
And for those of you who are wondering why on earth I need this medicine, I’ve included some excerpts from John Hopkins.
“In people with lupus, the immune system mistakenly attacks the body’s own tissues. Most immunosuppressives work to downregulate (suppress) this attack by interfering with the synthesis of DNA, the material in your cells that contains the blueprints for all of your genetic information. In doing this, these medications prevent the cells of your immune system from dividing. When cells cannot divide correctly, they will eventually die.
Immunosuppressive medications are used to control more serious lupus activity that affects major organs, including the kidney, brain, cardiovascular system, and lungs. Before prescribing an immunosuppressive medication, your doctor may perform a biopsy of the kidney or affected organ system to evaluate the most effective course of treatment. Sometimes immunosuppressive medications are given in addition to or instead of steroid therapy to lower the dose of steroids needed and thus spare some of the undesirable side effects of steroid therapy. For this reason, these drugs are sometimes called “steroid-sparing” medications or “adjuvant” (helping) drugs. Steroid-sparing drugs usually have a two-fold benefit, since they often reduce or eliminate the need for steroids while also improving lupus symptoms”
“Because immunosuppressive drugs put down the immune system, people taking them are at an increased risk for infection. They must try to stay away from people who have colds or other illnesses, and make sure to wash your hands regularly and maintain good personal hygiene. If you are also taking steroid medications, you may not realize that you are ill because the steroid may suppress your fever symptoms.
In addition, immunosuppressive medications are known to increase the risk of cancer development later in life. However, lupus itself is also known to increase the risk of cancer, so by controlling your lupus now and preventing it from doing further damage to your body, immunosuppressive therapy may actually decrease your risk of developing cancer. Either way, it is very important to control your lupus activity now to prevent other potentially life-threatening complications.”
“It is used in lupus patients to alleviate the joint pain and swelling of polyarthritis (arthritis involving multiple joints). It is only mildly effective for more severe lupus symptoms involving the kidneys and other organs and should be used carefully in people with these conditions. Historically, it has been used to treat cancer and psoriasis, a skin condition that can also affect the joints. It works by interfering with the production of folic acid, which is a building block for growing cells in your body. As a result, it hinders the growth of certain cells, including those of the immune system. This medication is also steroid-sparing, meaning it can be used in conjunction with steroids to lower the dose of steroid therapy and thus also lower the associated side effects. The medication is usually taken as a tablet in doses of 7.5 to 25 milligrams (mg) per week, but it can also be given as an injection. People usually feel improvements in 3-6 weeks, but it can take up to 3 months to feel the full benefit of the drug.
“Many of the side effects involve the fact that the medication works by interfering with the production of folic acid in your body. Therefore, your doctor will most likely recommend that you take folate supplements, which will prevent many of these side effects, including mouth sores (stomatitis). Other side effects may include nausea, vomiting, and an increased risk for abnormal liver function tests. Because of the danger to your liver, you should not drink alcohol while taking this; drinking while on this medication can cause irreversible damage to your liver. In addition, it is important to have normal liver function tests. In addition, lung problems, such as a continuing cough or shortness of breath, can occur while taking this medication but are more common in people with preexisting lung conditions. Talk to you doctor if you experience these symptoms.”
“Some patients experience gradual hair loss (alopecia), but hair usually grows back once you stop taking it.. In addition, it can increase your sensitivity to sunlight. Since many lupus patients already experience sun sensitivity, try to limit sun exposure and be sure to wear sunscreen when going outdoors.”
-John Hopkins Lupus Center
Gods blessings over all of you.
(and please excuse any grammar issues… I’m still not with it).