viviane salzman
Forum Replies Created
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Thank you so much Wendell.
Unfortunately, I come to realize that implicit bias plays a major part in my relationship with my mother-in-law. She is racist and she admits it. You know how some see us – lazy, ignorant, etc. She is an educated woman. She reads more about sickle cell than I do. She also went with me on an appointment to see my hematologist. He explained to her in detail what sickle cell is, and what my particular case entails. She is unable to accept my limitations and categorizes me as being lazy. My decision is to cut ties with her because being around her is toxic. It is unfortunate but it is reality. I am grateful that my husband understands and is supportive.
Stay healthy.
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Hi Victoria!
I had been wrestling with the idea of quitting my job for three years. Not because I wanted to but because my body could not handle the stress anymore. I could not keep working and taking care of myself, of my husband, the house, all at the same time. I sincerely believe that things became harder for me after my 50th birthday last October. At first, I gave up working full time thinking that I could handle a part time position but still, I was unable to stay healthy. I had a long talk with my husband about it but I could sensed that he was not a fan of the idea. He wanted me to keep on trying to work. I would be working for a month, and be in the hospital with a crisis. The cycle would repeat itself again and again. After so many blood transfusions, I end up with iron overload, something I never had to deal with before. At that point, I just made my own decision. I felt like if I did not stop pushing myself to work, I could have been in bigger trouble.
Victoria, I really love to have a lot of money because it makes me feel independent and respected. However, trying to make money and ruining my health felt senseless. I was ready for whatever way things would turn out with my husband. So far he has been supportive. I applied for disability in June but I have not had a response yet. I am using my savings when I need something. I do not make unnecessary purchases. When my car lease is matured, I will get a cheaper car. I am a believer Victoria. I believe that “all things work together for good to them that love God…” Roman 8:28
I wish I knew that things would turn out this way for me. If I did, I would have saved more money. I would have been smarter on how I spent my money. We are not like other people. We get tired easily and our health is very unpredictable. So having a balance on what we do is important. If you are worrying about paying your bills, you should have a plan. Do you mind me asking in what part of the world you live? How old you are? What you do for a living? Can you apply for disability and other assistance?
I am truly sorry you have to deal with this. Sickle cell is no joke!
Have a blessed day and be safe.
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Victoria,
Thank you for sharing.
What you wrote describes exactly what I used to go through. Since the incident with my mother-in-law, I made a promise to be true to myself. I no longer question myself about how I feel. When I feel well, I do what I can. When I feel tired or sick, I stay in bed for as long as I need to. I do not care anymore about what others think. As long as I am my genuine self, it is all that matters. Only God is my judge. I have read the other day that turning fifty years old has a lot to do with accepting oneself. I am living my true self, and I feel happy. I have been struggling since a long time with the decision to quit working; however, I was always concerned about what others would think. I prayed a lot and the Lord helped me gather the courage to do what is best for me. Now, I feel free! It is my life, I do as I please.
I hope you find the strength to decide what is best for you.
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Thanks Tito!
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Believe him/her when he/she says he/she is in pain. Most of them – sickle cell sufferers – are not drug seeking. Keep him/her warm. Do not assume anything. Do not pity him/her, just be compassionate.
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Hi Micheal,
To answer your question, I trust people to a degree but I always want the final say to be my decision – this is not just with my health, rather in every aspect of my life.
For example, I have a hematologist I like deeply, I know he cares but this does not stop me from questioning every decision making. I take doctors’ advice to a degree. I know my body more than anyone else, so I do not do or trust everything they recommend. If I have to look for a third opinion I will.
In some, doctors are not God. They do not know it all. I do not like a paternalistic approach for my health care. I believe that patients should be proactive, be educated about their conditions and be involved.Stay blessed,
Viviane
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Hi Tito,
Your question really strikes home and I cannot wait to see how others will reply.
It has not been easy lately maintaining a healthy work/life balance. I have been in an out of the hospital this past year. I had a viral infection at the end of 2019 (December 28), then I got diagnosed with influenza A in January 2020. Since then I have been in and out of the hospital with pain, low H&H, extreme fatigue etc. I have not been able to work much. It has been extremely stressful since I need to work in order to secure my health insurance. I really do not know what to do. It seems like work and sickle cell are incompatible. I am at the point of giving up, put an end to my nursing career. I feel like if I continue to work I might not live a long life because it is hard for me to take care of myself when I work.
Any suggestion or advice are welcome
Best,
Viviane
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For me it is Lewis Capaldi – Someone You Loved. Don’t ask me why, I just like the song.
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Hi Tito!
This is awesome! I wish I had this information before as I was in London two years ago. It was not cheap riding the Metro. Although I am unsure if this would apply to me since I am not a UK citizen.
I don’t think sickle cell has benefited me in any way. I, however think that the Lord knows why I have this disease. I think that my life would definitely be different had I did not carry the diagnosis. I cannot say if it would be better or worse, one never know! Anyway, I think the disease helps me be a very compassionate, empathetic human being.
Great subject Tito!
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Thank you so much for your comment Muwanguzi! Stay blessed.
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Thanks to you both Micheal and Tito! Stay blessed.
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Thanks Tito
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I am part of a support group, and yes the group makes a big difference in my life. Although we have not been able to meet since the pandemic, there are some members I can call when I am experiencing the blues. It is good to meet other people with sickle cell. They are the only people who can really understand because they are going to the same thing. When I call them, they encourage me, giving me tips on how to cope. I think being part of a group can have very positive impact on one’s life.
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Hi Tito,
I became a nurse because I wanted to know more about sickle cell disease. I wanted to learn how I could take the best care of myself and others with the disease. Unfortunately I have not been able to work with sickle cell patients. Ironically, being sick too often prevents me from being able to work on a med-surge unit where sickle cell patients are most often admitted. No hospital has a “sickle cell unit,” and taking care of patients with other serious diagnoses can be problematic. I love being a nurse. I did not want to give up nursing so I tried psychiatry and love it.
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Hi guys!
I struggle with fatigue every single day. Like you Steve, I used to be pretty energetic in my younger years. Lately, I have little strength. It takes a lot out of me to accomplish tasks that used to be pretty easy. It is difficult for someone without sickle cell to understand the struggles. Sometimes I cry when I find myself unable to function as I need. It is a sad situation. Anyway thank you for sharing, now I know that it is not just in my head.
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I have trouble with the extremes. I, however prefer the hot weather. I get cold easily and sometimes it is embarrassing. I am enjoying the hot weather right now! I’m with you on this Kassem!
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Hi Tito,
Me again!
I am an RN. I work as a psychiatric nurse on a forensic unit. I have not been able to work since March 27th because I broke my right great toe in two different places. Unfortunately,I did not receive proper care when it first happened as all attention were being given to COVID-19 patients. Finally, two weeks ago I was given a medical boot to wear for a period of four weeks. Because of the population that I work with, I am not allowed to be on the unit while wearing the boot. I am waiting for the toe to heal so that I can get back to work.