“you look great!”

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I’ve been getting a lot of this lately. People are so sweet and genuine in their comments. I do appreciate hearing that. I want to look good. But I also somehow feel a bit guilty. Who am I to complain when I look so great? I’m a horrible liar, so when people ask how I am, I have to tell the truth. I don’t feel good. I don’t know why I look good, but I’m so happy that I do, because I’m an aesthetic type who needs to “look good” to “feel good.”  I also thrive when my surroundings are beautiful. Many of my Instagram and Facebook are pictures are of nature and animals. I photoshop them because the final result gives me great pleasure. Gardening and camping do the same.

I originally started this blog because I’ve always been able to express myself better on paper. In front of people I get tongue tied and word-clumsy. I finally had the inspiration to update everyone yesterday after running into so many friends at Parent Teacher Night and having to answer the question “how are you?” multiple times.

So here it is. Since yesterday was unusually active, I could not wake up today. By that I mean that I felt the same as after major surgery in the recovery room! Groggy is an understatement. Unless you’ve had anesthesia or sleeping pills, you cannot understand this feeling. It takes monumental effort to move anything. And when I do, the day really starts. I make a fist to see how bad the arthritis is this morning-every joint is swollen and painful. My toes are starting to hurt. My stomach feels like I just ate a huge meal and the nausea is arriving. I get up because I have to-quickly-it’s already 7:45 and my kids have to get to school. Thank G-d my son is able to drive (without a license yet) so all I have to do is get myself into the car. I stand up and black out a bit, stand on painful toes and stumble into the bathroom, trying not to fall. I take my morning medicines, brush my teeth carefully, avoiding the gums that were just operated on because in the last few months my gums have receded so much that the roots of my once amazing teeth are exposed. I had the first of two grafts from the roof of my mouth  two weeks ago. The graft is not doing great, part is dying back.

I make it to the car where I try to wake up so that I can make it back home without an accident. Last week I crashed the tail light. The week before, I shattered the back window pulling out of the carport with the hatch up. We’ve spent thousands of dollars fixing all the body damage that I’ve inflicted on this car before I understood that it wasn’t really my fault. I used to be an extremely dexterous, coordinated person. I was encouraged to become a plastic surgeon when I was a surgery resident way back in the 90’s. That’s when I was able to run 13 miles, survive on no sleep every third night and still go out at night in Manhattan! Since then, my handwriting has changed and I can’t control it much. I’m clumsy and trip all the time. My legs are bruised all over. I break things in the house every day, torturing myself with major cleanups. When I feel good, on those rare days, I notice a huge difference in my coordination. I feel more in control when I’m driving. I can accomplish a lot more in the day, as I’m able to multitask like I used to. But those days are rare. Those are the days that I will get dressed, put makeup on and look my best. Those are the days you will run into me and say “you look great!”

 

Right now my neck and back hurt. I got the usual 4 or 5 shots of Botox to my neck which I try to get every few months, otherwise my head turns to the right uncontrollably. I mean all the way to the right so that I can actually look over my shoulder, kind of like an owl. This is downright embarrassing when you’re at the eye doctor who asks you to look at his nose and keep your head straight. It’s also embarrassing when you get a haircut and can’t stay still. I’m lucky because cervical dystonia used to be considered a psychiatric problem until imaging improved enough that they’ve localized it to the basal ganglia in the brain. That’s sarcoidosis! Weird stuff that destroys various parts of your body and causes a host of unrelated symptoms that overwhelm the doctors and make you feel like you’re crazy. At least the nightly vertigo is gone. Being woken at 2 AM because the room is spinning so fast is no fun. Without the Botox, not only does my head turn, but trying to keep it straight all day causes the opposing muscles to hurt terribly. This leads to tension headaches and terrible trigger points of pain along the shoulder blades. The pain is so bad that when they stick the  Botox needle in the spot, it actually feels great! Fortunately, I have wonderful doctors. They use a machine that practically screams when it’s in the spastic muscle. Very satisfying.

The other problem with all the neurologic issues in my head (tinnitus and hearing loss too), is that one thing leads to another. Something about all this has caused my right eye to cross. It’s more apparent when I’m tired. My husband notices it mostly and it’s pretty hard to notice with my glasses on-part of the reason I wear them. But the head turning, eye crossing and owl neck don’t do a lot for my self esteem. So you won’t be running into me on bad days-I’m too embarrassed!

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I have pain over my chest where my port was replaced a couple days ago. I have a port in order to get the infusion medicines that are supposed to keep the sarcoidosis at bay and maybe put it in remission. I think these medicines destroyed my veins because they also “look great,” but it takes an average of 3 sticks to get a working IV in my arm. And I bruise-like really bruise-huge, purple and ugly! Again, the aesthetic issue. Also what will people think? An anesthesiologist with huge arm bruises and evidence of needle sticks? Or maybe an abusive husband?? I can’t have any of that! So the port is logical. Nobody sees it. I put numbing medicine on before I get an infusion and don’t even feel the needle. It can remain for as many years as I need it. Perfect solution!

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Of course, I’m a rare case with the port too because a couple months after getting (and loving) it, it stopped working. This is pretty rare so soon,  and is usually caused by a clot at the tip. So you have to make an appointment with Interventional Radiology, go to the hospital like you would for surgery, and they try to figure out why it’s not working by injecting radioactive dye. My port, of course, did not have the standard clot. It was kinked and curled up in the wrong vein instead of sitting nicely near the entrance to my heart. So the  fellow decided to try and fix it, rather than replace it. This required anesthesia and a poke near the groin to fish a grasper up through the heart to pull the end of the catheter and straighten out the kinks. That was a few weeks ago. The port worked for another session, then partially for one after that, then stopped again. Another appointment with IR. Another anesthetic. Another giant bruise on my chest. Pain when I move around. No lifting for another two weeks which I can never abide by, as someone needs to get the groceries into the house! I learned that a gallon of milk weighs 5 pounds. I’m not supposed to lift that, but I’m right handed and the port is on the right and I need milk in my coffee every day!

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My fingers are getting misshapen gradually. The rheumatologist is concerned because I’m having a flare despite the three powerful immunosuppressants. She may have to add a fourth medication if it doesn’t get better by my next checkup.

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And then there’s the digestion. Two more miserable tests to try to figure out what’s wrong after over two years of suffering. Suffering because I get as bloated as I did during the last few months of pregnancy. Bloated enough to keep popping hernias despite the mesh fix I had last year. It’s pretty clear to me as a doctor what’s going on, but the doctors who take care of me have to have proof. Pretty much, the food that I eat doesn’t move through because the nerves that control peristalsis are shot. So without the combination of four to six other drugs (besides the ones for the sarcoid), I would be vomiting after eating. But this has gone from bad to worse over the last year. I’m nauseated a lot now which is new. Until the food moves through, I sometimes do vomit. This happens even though I stick to a mostly softer or liquid diet. But the good new is that I was finally  accepted as a patient into the Hopkins GI Motility Clinic, after over a year and a half of trying to get in. I have a great gastroenterologist, but there’s only so much he can do. So what do I look forward to these days? My appointment in the Motility Clinic!

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So, although I look good, this is my life! Yes, I might do projects in the house, but only on those rare days that I feel better. I will do something in the four hour window that I have that day before the exhaustion forces me back to bed. But I will feel accomplished and have another beautiful thing to look at from my vantage points in the bed or on the sofa! THIS is my life now! But I am glad that I can still look good.

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Please keep the compliments coming!

Donate to the Foundation for Sarcoidois Research

M

5 thoughts on ““you look great!”

  1. Hello Friend. I am so so sorry to hear about all the things that you are going through. You do look good, and I too would not have been able to guess all the things that are happening to you simply by looking at your face. I think it is okay to tell people that you are not doing good. I see a lot of good looking people like you. When I compliment them, if I ever do, I am also always aware that life happens to everyone and life hits everyone. Everyone has a story, especially the older we get. So, do not feel the need to hide.

    Concerning what you are going through, have you tried taking it to God in prayer? I have found that praying is really helpful. God answers prayers and prayers work. I do not know whether you have a relationship with God or not. I too have struggled at many times. I used to show up with make-up, nice clothes and everything looking all set, whereas I was struggling deeply on the inside. God has helped me in a lot of ways, and many of the things that I struggled with are now gone. If he can do this for me, I am confident that he can do the same for you.

    I do not know whether you have a relationship with God or not. If you already have a good relationship with God, congratulations, you are on the right path. You do not need to read this comment any further. Chances are high that if you have a relationship with God, you probably already know everything that I am about to tell you. I would say this, keep praying, keep obeying him, and keep trusting in him, and he would come through for you, his promises would be made manifest in your life. However, if you do not yet have a relationship with God, you are in luck, here are some exciting details about God that you need to know:

    You may have heard that God is the creator of the universe and everything within it. This claim is 100% true. God did create everything in the universe, including us humans. Like a good father loves his children, God loves each and every one of us dearly. He likes to provide for us, to bless us, and to help us. His intention is to provide for us in this life and to also grant us eternal life. Eternal life is the life after this life that we are currently living, you can simply call it the after-life. Eternal life would last forever. Not everybody would gain access into the eternal life. Since that life would last forever and in it people would not die, it would not make sense to allow in violent people, liars, thieves and others. Since these people would not die, there would be no end to the problems that they would cause. Therefore, only the purest people are allowed in. We humans cannot be pure by ourselves. We are prone to envy, lying, cheating others and so much more. We learn to do these bad things from such a young age, by the time we reach adulthood, we are already too far gone in it. For this reason, God sent his son Jesus to die for our sins so that we can be easily redeemed and saved. The blood of Jesus has made us pure and worthy. After the death of Jesus, all we need to do is to believe in Jesus and obey the Word of God, and those are the core for gaining access into eternal life. Like I mentioned earlier, God loves to bless us, and he desires to give us everything that we need. However, because God exists in the spiritual realm and we exist in the physical realm, we need to learn to understand how God communicates and to build a relationship with him in order to understand him. Over the course of building a relationship with him, you would understand how he works and how to locate the blessings that he has sent to you both in this life and for the next.

    God wants you to inherit eternal life, as a matter of fact, eternal life is one of God’s greatest gifts to humankind. Nevertheless, God also cares about how you fare in this life. He wants you to know that he loves you. He does not ever want you to feel alone, confused, anxious or sad. He wants you to know the provisions that he has made for you. Like a good father, he loves us and he would like us to love him and obey him. He has put everything in place for our good. There are numerous bible verses that exemplify God’s love for us, here are a few:

    The Bible says in Romans 8: 38 – 39
    “For I am convinced that neither death nor life, neither angels nor demons,[a] neither the present nor the future, nor any powers, 39 neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord”

    God says in Jeremiah 29:11
    “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future”

    God says in Isaiah 43:2
    “When you pass through the waters,
    I will be with you;
    and when you pass through the rivers,
    they will not sweep over you.
    When you walk through the fire,
    you will not be burned;
    the flames will not set you ablaze”

    God says in Isaiah 41:10
    “Don’t be afraid, for I am with you.
    Don’t be discouraged, for I am your God.
    I will strengthen you and help you.
    I will hold you up with my victorious right hand”.

    The Bible says in Philippians 4:6
    “Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done”.

    The Bible says in James 1:5
    “If you need wisdom, ask our generous God, and he will give it to you. He will not rebuke you for asking”.

    The Bible says in Psalm 34:18:
    “The LORD is near the brokenhearted; he delivers those who are discouraged”

    If you wish to build a solid relationship with God, I would include below a lengthy and detailed suggestion on how you can do so. However, I find that many people get scared at the length of the suggestions. I want to say this, it is a step by step process, do not feel the need to execute it all in one day. Go at a pace that works for you and trust the process. Some people also get the impression that I am judging them or trying to tell them how to act or how to be, No! I do not want it to come across that way, because that is not my intention, I am simply giving friendly suggestions. Some people also get the impression that i am trying to say that if they do not do everything on my suggestion list that they would be doomed. I am not trying to say this. Also bear in mind, that although my suggestions seem lengthy, they would quickly become second nature to you. If you struggle with any of the steps, you can ask God for assistance and he would it make it easier for you.

    If you are ready, here are my suggestions:

    1. Confession of faith: you need to find a quiet space. Imagine that Jesus is in front of you. Ask him for forgiveness of your past sins and the sins of your ancestors. Ask him to give you the strength to forgive those who have offended you. Honestly, I suggest that you forgive the people who have offended you, because whatever they did to you is now in the past, and upon a confession of Jesus as your Lord, you become a new creation. In addition, God commands that we need to forgive others, before he can forgive us. You can also get a deliverance before your confession of faith. Deliverance will rid you off any ungodly spirits that have taken residence in your body and mind. A pastor with a deliverance anointing should be able to help with this. There are also videos on YouTube, where pastors with a deliverance anointing pray directly for people through the videos. You just need to search “deliverance prayer” in the search bar to reach these videos. Now, you need to tell Jesus that you want him to come and be your lord and personal savior, and surrender to him. You need to know that Jesus died for you. He died on the cross so that you may have a chance at salvation. The minute you give your life to Jesus, you need to know that you can no longer live as you wish, you shall live according to the stipulations in the bible. Believe in your heart that Jesus was risen up from the dead by God, and confess with your mouth that he is the messiah and your personal savior.

    2. Prayers: Women need to pray with their hair covered with a scarf or any piece of clothing, this does not apply to men. If you have any unforgiveness, bitterness, or anger in you, it is better to address it before prayer. You are better off coming to God on a clean slate. If you are struggling with dealing with these negative emotions, ask God to help you deal with them first, before proceeding to your actual prayer (a quick prayer asking God to help you with these emotions should be fine). Singing worship and praise songs before praying is useful, because it allows you to get into the prayer mood. Ask Jesus to bless you with eternal life. Tell him to make a place for you in his heavenly abode. You need to understand that praying for heaven is the best prayer that you can ever pray. Life on earth is so short, you need to be worried about eternal life, which is so much longer. God knows that you need clothes, food, shelter etc. He is your creator and he knows your every need. The bible tells us to pray for eternal life and God would provide our other needs (i.e. clothes, shelter etc.) according to his riches. If there is something bothering you, tell God in prayer, commit it to him and ask him to do it for you. However, bear in mind that this life is temporary and so are the things in this life. When you are praying, the devil will try to disrupt your prayers by bringing sudden disturbances such as sudden phone calls or loud noises and evil thoughts. An example of an evil thought that the devil tries to use to stop people from praying is by bringing the thought that Jesus is not present and that they are simply wasting their time. Jesus is there with you when you pray. So pray like you mean it. Pray the same way you will if Jesus was right in front of you because he is. You need to understand how prayers work as well. You see, when you pray, God answers prayers. God usually has three answers to prayers Yes, Yes but Wait, and No. God has a reason for every answer that he gives. He loves you and he will make sure that everything works out well for you in the end. When you get a No from God, sometimes it is not because that thing is not good for you at that point in time, but it may be because God is trying to draw your attention to something that you are doing wrong in your life. When you get a No from God, you need to evaluate yourself, what is the motive of your prayer? is it pure? Is it Godly? Is there an area of sin in your life that you need to work on? When you reflect on these things and you find something in yourself lacking, try to fix it. When God says Yes to prayers and sends you his blessings, trust me, there are spiritual forces of the devil in high places that work against people so that their blessings from God would not reach them. You need to pray against these spiritual forces. Rebuke them by the power and the name of Jesus. This way, your blessings would be able to reach you. Lastly, some people pray lazy prayers. For example, someone might pray for a job, without actually applying to any. God does not reward laziness. When you are praying for something, you need to be putting some work in as well. God rewards hard-work and we ought to strive to be hardworking. God’s role is to direct, bless, and make your path clear. However, bear in mind that sometimes God answers even lazy prayers and gives us undeserved blessings, that shows you the power of his love. He would always be with you. You need to make sure that you are close to God in prayer. Do not cease to tell him about what you are struggling with. If you are struggling with sins of the flesh that you believe are hindering your spiritual growth, you need to make sure that you tell God. Make sure that you pray for an increment in faith. Faith is important, you need to have faith in God. When we pray, we need to have faith, God does not like it when we doubt his ability to provide us with what we want, he is mighty and nothing is impossible with him. When you are low in faith, pray to God for an increment in faith. Remember to pray for your family, your city, your country and the world in fact, no prayers are too big for God. Pray that unsaved people would be saved. Pray for your non-Christian family members, pray that they see the light and become saved. When you pray, make sure that you take care of sins. The bible says that we need to forgive others if we want our sins to be forgiven. Make sure you forgive others, ask for forgiveness of your sins first before praying. Sins can block your prayers from getting to God. Try to avoid sin, but pray for forgiveness of sins everyday, because sometimes, we are not aware of the sins that we are committing. When you get answers to your prayers, remember to thank God.

    3. The Bible: You need to make sure that you are reading the bible and that you are obeying it. I suggest you begin with the New Testament because the coming of Jesus changed many of the things that were practiced before. However, bear in mind that the old testament is also important. You can find free bible apps on google play. You can also find free bibles online. The New Living Translation is an easy to read bible version. However, the most popular one is the King James Version.

    4. Hearing from God: Trust me, God would speak to you. He would speak to you through dreams. Through people, through situations, through the bible and so much more. You need to practice and perfect the art of hearing God’s voice. Dreams contain a lot of symbolism. When you possess an avid knowledge of what the bible says, you would understand the biblical meaning of all the symbols in your dreams. However, for now, you can search online bible dream dictionaries for the meaning of things you see in your dream. You also need to know that although there are general meanings for some symbols, some interpretations are based on context. Take context into account. God does communicate via dreams. Sometimes, you might be asking God for direction on something. Pay attention to the words all around you during this time i.e, the things people say, words you see when reading the bible etc. Sometimes you might even just turn on your TV and the TV anchor would say something that directly relates to what you are going through. Pay attention to these things. You would know it is God’s voice when whatever is said is not in contradiction to the bible and God’s nature. If it is in contradiction then it might just be something random that popped up. You can also hear God’s voice by meditating on him. You can do this by finding a quiet space, you can play some background Christian music if you want. During this time, close your eyes and focus on God. Do some praise and worship in your heart first, then invite Jesus to come to you. Ask a question and pay attention to any bible verses that are brought to your mind, inner voices that you hear, any general feelings etc. If what is said is in line with the bible, then it is probably God speaking. It might take several weeks before you begin to hear God via meditation. If you keep trying one method and it does not work, try another method, like paying attention to the words around you. As you practice the art of listening and hearing, God might give you the gift of seeing visions or the gift of hearing an inner voice, and take you to deeper depths of hearing.

    5. Fasting: fasting is an effective way to get God’s attention. Fasting is a way to spend time with him. You deprive yourself of food because what you seek for is more than food. There are different types of fasting, and you need to plan what works for you. There is the:

    A. Avoidance fasting: This is a fasting form where you avoid something that you cannot do without i.e. Coffee.

    B. Daniel’s fast: In this sort of fasting, you only eat fruit and vegetables and drink water. You do not eat anything cooked or anything other than fruits and vegetables.

    C. Water fast: In this sort of fasting, you do not eat anything, you only drink water. No food, just water.

    D. Total fast: In this sort of fasting, you do not eat or drink anything. You do not drink even water.

    Make sure that you work out what works for you. You can pray to God for directions on the timing of the fasting to follow. However, as a general time-frame, on fasting days, many Christians fast from 6am to 6pm. Many Christians also use those moments when they feel hungry/ feel cravings as prompts to pray. You need to have increased prayers during fasting periods.

    6. Temptations: When you believe in Jesus. Trust me, the devil sometimes would throw trials and tribulations into your life, the goal of this is to get you to denounce your faith. The goal is to frustrate you. You need to pray and fast when trials and tribulations strike. God would never leave you or forsake you. He would be with you and with God, you will overcome this if it ever happens.

    7. Spreading the gospel: Now that you know the truth, you are chosen. It is now your duty to share the truth in the bible with others. Make sure that you save people from falling prey to Satan’s tactics. You need to join the fight to depopulate the devil’s camp, while populating God’s kingdom. With spreading the gospel, do not feel the need to finish reading the whole bible before you begin. You can teach people the little you know.

    8. Read: There is a lot of material out there. There are ministers of God who have practiced for about 40 years. These people have a lot of stories about their ministry. Some of them have the gift to heal others, others see visions, some of them hear God’s voice. Many of these people have written books about how they accomplished what they have accomplished, and how they got their gift. Buy these books and read them. If you do not have money, some of these ministers have shared their stories for free on YouTube, take advantage of that.

    9: Reform yourself: begin to watch Christian movies and listen to Christian music. Make sure that your thoughts, actions, and words are in obedience to the word of God. Make sure that you are not doing anything sinful in your thoughts, actions or words. Refine your world, the space around you, the things you see and hear, make it all about God. You can also join a community of bible believing Christians. However, I need to tell you that there is sectarianism in the religion. Do not pay attention to sectarianism, pay attention to the bible. The bible is your authority. If a church seems to have too much sectarianism issue going on, if they are more focused on promoting their denomination than promoting God and the word in his bible, you need to stop going there. Get a water baptism, and pray so that God would baptize you in the holy spirit.

    (I know I have written this list in the order of 1 to 9. It is crucial that you begin with Step 1. Prayers are something that you need to do constantly, so is bible study, hearing from God and reforming yourself. However, you can start small with fasting and spreading the gospel. You can start by preaching to your family members in the beginning phase of spreading the gospel, but you need to expand on these over time. I know this list seems long and all these seem deep, but trust me, you would blend into it so easily and it would become second nature to you. Pray to God to make all of these easy for you, and he will. The devil would try to trick you into believing that God’s standards are too high and that you would never overcome sin, when in actuality, you can. So therefore, pray to God and believe and he would help you overcome sin).

    If you ever backslide and fall back into sin again while trying to follow God’s word. You need to ask him to forgive you and try to get back on track. You should also ask him to strengthen you, so that you can have more strength in withstanding and blocking off sin. God would hear your prayer and he would send help according to his will.

    If you have any questions, feel free to let me know. If you need to talk, I am here for you. God bless you. Have a blessed day 🙂

    Liked by 1 person

    1. This is beautiful. Thank you so much. I do believe in god but your message helped me realize that I can do much more than I am. I appreciate the time you took to send this to me. Wishing you blessings in your life and continue reaching out to people. People need to hear your message now more than ever. I think this country has taken G-d out of daily life and that has been a mistake.

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  2. Dr. Price you are an amazing writer! And i love seeing your beautiful pictures on Instagram. I always thought you were a beautiful human being inside and out and still do! I hope others with sarcoidosis can find comfort in reading your stories. Please keep them coming, i enjoy reading them.
    -Amy

    Liked by 1 person

    1. Amy, thank you so much for taking the time to write your comment. I so appreciate it. I miss working with you and hope alls going well. Following your adorable son! People really seem to appreciate my updates and writing these prevents me from having to give everyone the gory details each time we meet. I can spend my time with friends talking about normal things rather than my health. Sarcoidosis is really weird and reading other’s experiences is sometimes the only way to gather information about what the future holds. Since everyone seems to have a different experience with the disease, there’s not a lot of useful info out there. I hope I can help others as well. I feel bad for nonmedical patients. Navigating your care with sarcoidosis is so complicated and I’d love to help others figure it out. Great to hear from you!

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