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Seek first to understand, then to be understood.
It is late, and way past the time I allow myself to get online. However, I realized this evening that it just might be okay to reach out to others in an effort to the fear I am facing presently. I do have quite a bit of strength and humility, but for the first time since I have been "sick" I am now afraid.
I have had some lab work done all summer, one test in particular was a LDH test. The first two tests came back abnormally HIGH. The nurse for my hematologist, who I will get to later, notified me a couple of weeks ago that the doctor thought the results were a "fluke" and that I had to repeat the test, which I did. The third test came back even more abnormally high. I do understand what the test is for and what the results can indicate.
After the third test I wrote a note to the hematologist and asked what the results meant in terms of my overall health condition(s). His RN, who I now refer to as Nurse Ratchet, responded that I had to find out what the test meant by asking my PCP. My response to her was : "Just so I understand, the doctor who ordered the test and who thought that the abnormal results were a "fluke" is unable to explain to me what the results mean to someone in my situation." Again, she told me to find out what they meant by asking my PCP, which I did, and also explained the difficulty I was having getting answers. He responded that he did not know the significance of the test, but would ask the hematologist and get back to me, which he did.
I have to have a CT Scan of my chest, abdomen and pelvic area so that "they" can "rule out other things." I did not ask what he is trying to rule out because I already know the answer, thus my fear.
I understand that I must live in the moment and that I have no control over anything, other than my own happiness and the kindness I give to others. Having said this, I feel so weary. Many of my friends have told me not to get stressed out, try to meditate, breathe etc,. however, this road I have been travelling has been so arduous that I cannot sit still, presently. I have been afraid to post anything about this because doing so makes it more real to me. However, I know there are many others who have probably been in a similar situation, and for this reason I decided to tell this story tonight.
I saw my urologist on Friday, a doctor I highly regard, and who cares about me. She is very spiritual and said that earlier that morning she had read something in her bible that was said by Solomon and she thought about me. She told me that God has a plan for me. Everyone knows that I am not an especially religious person, however all weekend I kept saying over and over, "God has a plan for me." In some way I found comfort saying this aloud. And then tonight I cried for the first time since I became "chronically ill."
Many on this platform have helped me so much, have given me so much hope and things of that nature. If not for this site I never would have known to ask certain questions, advocate for myself and things of that nature. I wish I could thank all of you over and over again. All of you who I do not know personally have given me strength without knowing it, and I hope that I have given some to everyone as well. Thank you for reading this. Arigato, merci, danke.
Please tell me what to do with this fear that is eating a hole inside of my spirit. I feel so lost and alone, and in as much as I want to talk to my sister about this tomorrow when she comes over, I am not sure I will because I know she has enough going on in her own life with her 73 year old husband who has advanced dementia, like my friend. On the other hand, I want her to know. She is a cancer survivor, as is my other sister, the one who extracted me from her life. My mother died of cancer. My entire extended family died of some form of cancer. I am afraid.
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frances007, God Bless You. I don't know if you had Covid or not, BUT, a lot of doctors do not realize that after COVID your bloodwork can be extremely elevated. Mine was for a while. They thought I was pre-diabetic, that I have liver issues due to elevated liver values & that my pituatary gland had stopped working. All of this was from COVID. If you have had Covid in the last few months, wait again before you have bloodwork done. I am praying for you either way. Yes, God has a plan for you and is working in this. Hugs & Prayers.....
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2 ReactionsWe are glad you came to us and have joined our world. I will pray for you.
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1 Reaction@frances007 Fear and anxiety are so very difficult. I know this only too well as I’m in the “waiting room” waiting for results on a biopsy from last week. Like you, I tell myself that this is out of my control. I do tell my brother and my partner how I’m feeling just so that they know why I’m a bit “off” right now. Your wrote that your sister is a cancer survivor and has a husband with advanced dementia and you feel you don’t want to more stress for her. I understand that, too, because I have been in that situation. Then I put myself in their place because these are siblings that we know so well. What would I want to know in their place? Can you ask yourself that question and perhaps that will inform you on whether or not to talk with your sister?
We are always here, any time of the day or night, to read, listen, and support you.
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6 Reactionsin reply to @naturegirl5 Thank you very much for your kind and supportive words. As luck would have it, my sister was unable to come over today because she had to stay home and take care of her husband. I will not see her for a few weeks. I have baked enough bread and cookies to open up a small bakery. LOL.
I remember when my oldest sister, the one who I am very close to and who I expected today, had breast cancer. She did not tell me that she had discovered a lump on her breast until after she got her diagnosis. The same with my "non sister", although I only found out from sister number one that sister number two had breast cancer. We were raised by a mother who was probably related to Marcus Aurelius. Think: stoic, as I am sure you understand. After laying around most of this afternoon, I have decided not to say anything specific to my sister, other than the fact that I will be having more tests and that I will keep her updated. It is hard enough to talk to her on the phone anyway because her hearing is worse than mine, and she prefers text messaging.
I have a strong support system, MCC included, and I can rely upon those in my "circle" to provide me with the "comfort" I might need going forward. I may have mentioned that my former rheumatologist, now a friend, has full access to my medical records, and she is a very good diagnostician. She has been going through all of my labs and texted me last week that she has come up with something, and we plan to talk this week. I may have mentioned that she did part of her residency at the Mayo Clinic way back when, and I feel very fortunate to have made her acquaintance.
I keep thinking about that quote from Ms. Roosevelt. Nothing to fear but fear itself. I think I have been in some kind of denial about my overall health situation because of my "history." Learning early on not to complain or reach out when I was sick and things of that nature. Not being allowed to be "sick" or complain. However, as I have learned so much about myself as a result of whatever is wrong with me, I now believe it is okay to reach out for help when I need it. I am talking to my psychologist tomorrow, and the fact that she also has a MD, is very helpful.
Admittedly, I was afraid to post anything about this current matter, but an really glad that I did because I need all the support I can get right now, and I thank you again for your wisdom and kindness toward me.
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3 ReactionsHi Frances007,
I'm so sorry to hear that you are going through all of these issues lately and also having to deal with "Nurse Ratchet" as you so aptly put her! Can't people in the medical field realize that they are dealing with sick people who need kindness and tenderness? I've run into a lot of them in the past with my Mom's medical situation and now with my husband's lung cancer. I would suggest that you research your health issues and tests on the Mayo Clinic website. There, you will get all of your answers and truthful, correct ones. I research my husband's and my own physical and medical problems on that website. It's very helpful. Also remember that it's your body and your money. You are in control of it. If they won't tell you the reason for the test, then refuse to take it. Tests usually cost a lot of money. They will find a way to let you know what the test is for so as not to lose that money!
Your doctor who is religious is so right! God does have a plan for you. Pray and let God know of your feelings, fears and concerns. Just talk to him like he was your best friend and he is. God loves to hear from us these days because not many people talk to God anymore. I think he gets lonely. You might even try reading the Bible, (Old King James Version, not the new one.) daily. Start at the beginning and read a little each day. My husband and I do that. It's amazing how relaxing and reassuring it is. If you do start reading it and come across the word "Kine" it is an ancient word for cows. Also did you know that God parted other seas besides the red sea? I didn't know that until I read it in the Bible.
Tell your sister how you are feeling. She would want to know. I'm sorry to hear of your family members having cancer. However, that doesn't mean that you will necessarily have cancer or if you do have cancer that you will die of it. My husband has stage 4 lung cancer and was supposed to have died after 5 years. It's now been 12 years and he's still with me and doing great! We prayed a lot during the whole 12 years!
Francis, I will pray for you. We, on this forum are all here for you. Let me know how you are doing.
PML
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2 Reactionsin reply to @pml Thank you so much! Your words give me hope, something I have recently been losing, especially because my road to finding out what is wrong with me has been so long and arduous. I feel terrible about my earlier post to the person who responded to my post about the hearing issues. I don't know what I was thinking, or even if I was.
Yes, Nurse Ratchet. Interestingly enough, after my first "in person" visit with the hematologist, I sent each of his nurses one of my cards thanking them for their kindness. Nurse Ratchet received her card. The other card was returned, had been opened, and the front of the envelope had a stamp that said, "unable to deliver." It was then that I told a woman in the lab that there was a conspiracy going on with the nurses over my cards. I sent another one to a nurse in the infusion center where I had iron infusions. Same thing. Opened, but "unable to deliver." I knew I had sent it to the correct address. Whatever, right? My friend at the lab thinks some nurses are terrible, and I would tend to agree. Afterall, I lived with one for ten years, a sociopath. I literally fled with my dog and my clothing. She used to tell me stories about how her patients in the ICU loved her because she would give them whatever drug they wanted, when they wanted. However, I knew the reason why she did this. She wanted a "break" and if all of her patients were essentially sleeping, that would give her a lot of free time. All of this and other items pertaining to my life are now part of a book I am writing, which will also include my personal experiences in dealing with our now screwed up medical system. I will let all of you know when it is published. We all have a story, right?
I have not identified myself as a Christian, usually telling others that I am an agnostic. However, whenever I see my urologist she has something from the Bible to share with me, and these things comfort me in ways I have not experienced before. I just finished reading the Koran at the behest of a very good friend who is a Muslim, and I found it to be very interesting and a lot more straightforward than the MANY copies of the Christian bible. In fact, my friend told me that many had given him copies of the bible to read when he was fighting in Afghanistan. He started with the King James version, read several more versions and decided that so much of what he had read was conflicting. He and other Muslims I know always tell me that there is only one version of the Koran, and that it does not matter what country one is living in, they all read the same thing. A very sensible thing in my opinion.
In my opinion there are Christians and then there are "Christians", the kind my sister calls "Sunday Morning Christians" like my "friend" who told me I looked like a Holocaust survivor and that buying make up would surely make me look less gaunt. I think I will take you up though, and select a bible to read and try to understand. I have a book in my library that belonged to my now dead mother, "Don't Know Much About the Bible" written by Kenneth Davis, a very famous author. I often pick up this book to gain an understanding of some of the stories in the bible because I am interested in learning new things. In fact, I recently started some kind of online bible study so that I could further educate myself because I really am an information junkie.
I hope that I have not offended you in any fashion. You sound like a very compassionate person, like me, and I thank you for taking the time to respond to my post.