Monthly Archives

February 2021

Podcasts

Episode 4

20. February 2021

Too much of a good thing

Stress is considered a bad thing. But…. can stress be good? Is there a positive type of stress?

I have recently listened to an interesting discussion. A psychologist said that stress and excitement manifest the same way. I don’t know what you think but I think there is a lot of truth in that statement. When I am stressed out I usually have shallow breathing, my heart beat is elevated and my voice trembles. I started watching myself and realized that really, stress and excitement are manifested in the same way. I am unable to control my emotions, I have shallow breathing, my heart beat is elevated and maybe my voice doesn’t tremble, but I tend to talk too fast and can’t wait for something to happen when I am too excited.

Now, don’t take what I am about to say as scientific evidence. It is just my way of explaining my recent blood tests. I saw my rheumatologist yesterday. I am used to having these consistent results. My autoantibodies are always super positive but the rest of the blood work is usually normal. This time though, complement C3 was lower than the normal values. I now feel like I have this exclamation mark hanging over my head saying to be careful. Why? Complements are an important part of our immune system because together with antibodies and white blood cells they fight off infections. Now, when their values are reduced, it may be a signal of the disease flaring up. Beware that this is not true for every person with lupus. Some might always have a low level of C3. But for me, after monitoring throughout the years, my complement levels are low only during disease activity. My rheumatologist constantly monitors two complements C3 and C4. C4 was normal although at the lower end of the spectrum.

Now, obviously, these results may not mean anything but they might if I don’t control myself better.

I started thinking what could be the cause of these strange results. I realized that for the past several months I have been doing things that I love, that excite me, that I am so happy to be doing. And I realized that this might be negatively affecting the disease activity. I have started publishing on Petronela’s Journey more frequently, I have started doing many different things – taking photos, writing articles, blog posts, shooting videos and interviews and recording podcasts. It is all creative work that I really enjoy. It is so much fun, I love it and I am always excited to be doing it. And when I see your comments…oh my, your feedback means the world to me.

In my everyday life, I am a translator. I really like it but it is a job that I cannot really control. I either have a lot of work or none at all, there is almost never anything in between. Again, more stress for me.

There is one more thing that I am working on right now that I haven’t shared with you yet. The time will come. Spoiler alert, I found my calling. I found out what I want to do in my life, what I want to be in my life. It is a very practical occupation and I have already been seeing clients as part of my case studies. When I see the results of my clients, when something positive happens to them or when they have a revelation about themselves, it just makes me so happy for them and I love seeing them improve their life.

What I am telling you right now doesn’t mean that I will stop doing all these things, it just means that I have to find balance. I will need to take resting and my wellbeing as my priority. I want to assure you that this in no way means that I will stop doing what I do. It just means that I need to learn to control my emotions better. I don’t know yet how but I love doing what I do so much that I will do anything in order to stick to it. But I also want lupus to be stabilized. So wish me luck. And please let me know what you are going through right now. Whether you can relate to my experience with positive stress and it having an impact on your disease activity. I love hearing from you.

Lupus, Pregnancy

Preparation for Pregnancy

20. February 2021

Finding prince charming can be a daunting task. When you finally find the one, true love, you want to start a family. It may not be so easy because there is this big shadow over your head called lupus.

Now, let me tell you some good news. Women with lupus can have children. There are certain steps that you would have to take prior to conception. It will be so worth it because you will have a healthy pregnancy and be able to take care of your future baby.

Have a look at my video where I interview a rheumatologist who specializes in pregnancies with lupus. This is part one of three in the Pregnancy and lupus series. We are having a closer look at the preparation for pregnancy.

Lupus, Pregnancy

EULAR Recommendation 3

20. February 2021

Can lupus cause infertility in women? Although it may be difficult for a woman with SLE to become pregnant during a severe flare, women who have lupus have normal fertility rates.

“Women should receive counselling about fertility

If you wish to have a baby, either now or in the future, you should discuss general and disease-related risk factors with your doctor. Your lupus (especially lupus nephritis), your age, the drugs you take for your lupus, certain lifestyle exposures (such as tobacco use or alcohol consumption) may affect your ability to get pregnant. There may be lifestyle changes you can make to improve your fertility, such as limiting how much alcohol you drink, or stopping smoking.”

Sources:

https://www.eular.org/myUploadData/files/Lay_summary_EULAR_reco___Mgt_SLE___TF_report.pdf

Lupus, Pregnancy

EULAR Recommendation 2

20. February 2021

“Women with lupus should be counselled about the use of effective contraception

Your doctor should talk to you about your contraceptive options, including the pill, a coil, or an implant. Using contraceptives is especially important to prevent unwanted pregnancies when your disease is very active or when you are taking drugs that could be dangerous for a fetus. A combined pill may not be suitable if you have APS, or if your doctor thinks you are at high risk of developing blood clots. In such cases, the progesterone-only pill and a coil may be suitable options.”

The most effective oral contraceptives are those that contain a combination of the female hormones estrogen and progestin. In addition to helping to prevent pregnancy, they can also lower the risks of getting certain gynecological cancers, including uterine, enometrial and ovarian cancers. However, they can potentially cause blood clots, worsen migraines, worsen liver disease or increase the risk of developing breast cancer. Studies show that the „newer“ OCPs that contain lower amounts of estrogen are generally safe in most women who have well-controlled lupus without increasing the risk for lupus flare.

However, one never knows with our disease. Have a look at the list below when oral contraceptives are contraindicated.

Women who have lupus who should not take oral contraceptive pills:

  • Have active moderate to severe lupus
  • Test positive for antiphospholipid antibodies
  • Have had blood clots in the past
  • Have had a stroke before
  • Have poorly controlled hypertension
  • Have atrial fibrillation
  • Have had coronary artery disease or a heart attack before
  • Experience migraine headaches
  • Have Raynaud’s Phenomenon (although this is not for certain)
  • Who smoke
  • Have nephrotic syndrome (a complication of lupus nephritis that increases the risk of getting blood clots)
  • Have had breast cancer in the past
  • Have very high cholesterol (increases the chance of blood clots)
  • Have cirrhosis of the liver or liver cancer (to include hepatic adenoma)

Sources:

https://www.eular.org/myUploadData/files/Lay_summary_EULAR_reco___Mgt_SLE___TF_report.pdf

The Lupus Encyklopedia, Donald E. Thomas

Lupus, Pregnancy

EULAR Recommendation 1

20. February 2021

In 2017 the European Alliance of Associations for Rheumatology (EULAR) introduced EULAR recommendations for women’s health and the management of family planning, assisted reproduction, pregnancy and menopause in patients with systemic lupus erythematosus and/or antiphospholipid syndrome. These 12 recommendations move away from undue caution against pregnancy for women with lupus. On the contrary, health professionals are encouraged to open this topic with their patients provided that the individual risks for each one of them are discussed. The recommendations were developed by a multidisciplinary team of medical specialties, other healthcare providers and patient representatives. They are based on scientific evidence or expert opinions of the members of task force themselves. For the next 12 days, I will tell you more about each recommendation. Please share these posts so that women with lupus and/or APS know about them.

“Women should receive counselling and advice before they decide to have a baby

Very severe or flaring lupus, or having APS can have very serious consequences for a pregnant woman and her baby. This should be discussed before a woman decides to have a baby. Each woman’s risks, such as her type of lupus and her individual treatment regime, should be assessed to help develop the best strategy for a safe pregnancy.”

Sources:

https://www.eular.org/myUploadData/files/Lay_summary_EULAR_reco___Mgt_SLE___TF_report.pdf

Podcasts

Episode 3

12. February 2021

About heading in the wrong direction, about a slap in the face or how it all started.

In the third episode, my podcasts become interesting. I will tell you a story about lupus diagnosis and the decision to change my life so much that I am happy and calm even with a chronic illness.

My journey, Self-help

Urinary Tract Infections

9. February 2021

It can be difficult to live with lupus. Especially when you feel like you are attracting everything the wind blows you way. Have you also noticed that a certain part of your body gets attacked more often than others? Mine is the urinary tract. It seems to be the most vulnerable.

Let me summarize what antibiotics for urinary tract infections you should avoid at all costs, what alternatives you can try out and foremost how to prevent these common infections.

Antibiotics for urinary tract infections to avoid:

  • Sulfamethoxazole and trimethoprim cause lupus flares. I was recommended to put it on my list of allergies so that every doctor knows not to prescribe this medicine.
  • Doxycycline also worsens the symptoms of lupus and should be avoided by luppies.
  • In addition, I am allergic to penicillin, i.e. cannot take penicillin, clarithromycin, ciprofloxacin, cefixime commonly prescribed to treat UTIs. If you are allergic to a certain active substance you have to avoid all medicines in this group.

What helps me get over the inceptive infection? There are actually several products.

  • First warning signs – very mild but strange feeling when I pee – I use homeopathics made by my doctor. You can disagree with this approach but it helps me in these initial stages.
  • If I overlook the first signs and they become more apparent – the feeling of not completely emptied bladder several times in a row, frequent urge to pee – I alternate between two herbal products – one is a mix of several herbs to help with UTI and the other one is with Tropaeolum majus. These work the charm quite nicely. You can look for products that contain cranberries, Veronica officinalis, Tropaeolum majus. Before you try any of these, it is good to consult with a medical professional whether they are suitable for you.
  • When I ignore the previous signs and the infection spreads – burning sensation when peeing, smelly urine, or swimming in a lake right after my period, I go for my urologist’s recommendation. These drops contain also hyaluronic acid, D-mannose, and extracts from Tropaeolum majus and Epilobium parviflorum.
  • Only when the above-mentioned remedies don’t work, I see my doctor and we set on a journey to find something stronger for me.

However, the most important although I am writing it at the end, is prevention. I try to prevent UTIs at all costs. They are uncomfortable, they hurt, they take forever to heal and I like feeling good, healthy. So, what do I do?

  • I read the signs of my body. It takes time and practice but once you master it, you’ll realize that your bodies tell you everything.
  • I don’t sit on cold surfaces. My grandmother taught me not to sit on the ground in the months that have an -r in them. Not that I follow it to the letter, but I rather stand or sit on a pillow.
  • I keep my feet warm. I wear socks and slippers almost all year round. My feet just get cold easily and it is an easy way for me to get a UTI.
  • I wash myself down there often and keep my underwear dry and clean. Also “dirty” bacteria can cause UTIs.
Podcasts

Episode 2

5. February 2021

On a brown analogy, positive mindset and life with lupus