Jemma Rosewater

@hyperacusis_awareness
Hyperacusis sufferer, teen rare disorder and chronic pain advocate, blindness, writer, mermaid lover, book lover, check out my Facebook: Hyperacusis Awareness Instagram: hyperacusis_awareness YouTube: Hyperacusis awareness
Community Voices

I have covid-19

4 days ago a doctor in a full face mask pulled me out of the isolation area in the ER room and outside to tell me, I have covid-19.

I don't need hospitalization, yet. I'm 50.

I go between being panicked and crying, to being at peace with it. One minute I'll be painting my living room because I am *great* friends with denial and pushing through things, and the next I'll be sleeping all day in a fever dream.

But I'm still here.
Afraid and not afraid. Planning for a future and not daring to. From one moment to the next I'm crying and then planning on painting my living room because I need something for my brain to do or it may eat itself.

Work has all but dried up, even though I work from home. I panic about that a lot.

I am alone.
No family. Friends stopped talking to me once I told them about having the virus. I don't know why.
I have my cats and the internet and the ticking of the clock.
But I'm still here.

Once I get a better emotional handle on this, I'll write more.
But for those of you who have this and are afraid, or those of you who don't yet have it and are still afraid, I wanted to let you know;

I'm still here.
I have this, and I mean it sucks, and it's scary and sometimes I cough so hard I can't catch my breath, but I'm still here.

I'm not sure why, but it mattered to let you all know that today.

#COVID19 #Anxiety #OCD #Depression

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Rachel Calhoun

The Problem With the Standard Pain Scale for Chronic Pain

“Rate your pain.” Such a simple request, isn’t it? I never quite know how to answer it, though. I work in healthcare so I am very familiar with the pain scale, the numbers, the faces, but until I became a patient with chronic pain I never understood how complicated that scale actually is. Pain is such an individual experience. It’s very hard to communicate this experience to other people. For example, you can take two people coming into the emergency room with the exact same injury: a broken arm. These two people will give you a very different description and rating of their pain, even though they have the exact same fracture in the exact same bone. It’s all about how your brain perceives your pain and also your past history and exposure to pain. Those of us with chronic pain wake up every day with some type of pain. This automatically causes a problem with the standard pain scale that starts at zero. Some of us never have a zero. Most of us live our daily lives at the standard pain scale level of 2 or 3, and sometimes at 4 or 5. People who don’t have chronic pain often have a hard time understanding that. We are able to function at these pain levels because we don’t have a choice. So, if I go into the emergency room with pain and they ask me to rate my pain with the standard 0-10 scale, I’m likely going to rate it an 8 or 9 because I only go to the ER when I absolutely cannot get any relief with anything else i have tried. However, this makes the hospital staff question if I am telling the truth. What they have been taught and shown is that a patient at an 8 or 9 is going to be inconsolable, writhing in the bed, screaming out in pain. They look at me and see me lying in the bed with few tears. I may even be on my phone looking at Facebook or Pinterest. I will be changing position in the bed frequently, trying to get comfortable, but I will be quiet and probably appear a little withdrawn. This goes against everything they have learned in their training and years of experience. In their eyes, my pain can’t be a 9; I look like I’m fine, maybe a little uncomfortable. This is where the communication problem arises. A chronic pain patient’s pain scale is very different from the standardized pain scale. If you want me to rate pain on a scale of 0-10, you have to realize my chronic pain scale 0 is the standardized scale’s 2. On the chronic pain scale, I’m usually at a 6 or 7 when I decide I have to go to ER, which converts to the standard scale’s 8 or 9. You also have to realize I have become very good at hiding signs of pain. I try not to talk about it because I know my friends and family get tired of hearing it. I try not to grimace when the pain hits me because I don’t want to answer questions and discuss my newest pain. I use distraction a lot to help me get through the harder times. I don’t like to draw attention to myself; I don’t want people to feel sorry for me or treat me differently because of my illness. I just want to be seen as “normal,” even though I feel anything but normal. So, you can’t assume I am not in pain by judging me on how much pain I appear to be in. We become masters of appearing normal, of faking being well, so when I reach out for help and admit I’m in pain, please realize this simple act says more than any number on a scale could ever say.

Community Voices

In one word, what is your greatest fear with the current COVID-19 crisis? OCD-related or not.

Sometimes it's actually helpful to try to whittle down a cacophony of stressors worries thoughts everything... in to a few words or one word. I'd be curious what your greatest fear is with this pandemic in one word ( And feel free to explain Mine is "distance." I fear I am losing who I am as I am not able to do many of my ritualistic actions. I fear distance from my goals because I am now questioning the worth of everything #COVID19 #ObsessiveCompulsiveDisorder #Anxiety #Depression #MentalHealth

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Community Voices

What’s one way someone else can support you while you’re stuck at home?

<p>What’s one way someone else can support you while you’re stuck at home?</p>
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What item makes you feel safe?

<p>What item makes you feel safe?</p>
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Community Voices

Losing my unborn daughter to Cytomegalovirus

Our journey has been a long road. After going through fertility and having a miscarriage in October 2018, we were finally able to get pregnant with IUI in September 2019. Weird thing was that Eleanor and her sibling had due dates that were a day or two apart. It was unbelievable timing and. we were absolutely thrilled.

We had normal ultrasounds all the way up to our 12 week scan. During this time we found out that our daughter had Cystic Hygroma (A fluid-filled sac that results from a blockage in the lymphatic system). We had the common chromosomal testing completed at the OB, along with finding out what the sex of our baby was going to be. It took about two weeks to get the results back. At that point we had already met with Maternal fetal medicine doctors. Everything for our NIPT testing came back normal, that’s when we found out we were having a GIRL. We were so excited, but also taken back because the testing had been normal.

At week 13 we had an appt and saw that the Hygroma had shrunk, but not by much. We were told that she would most likely have some other kind of genetic disorder and we should terminate. We were absolutely devastated to hear this, all doctors at every single appointment had given up on her but we never did. We began looking into everything about Cystic Hygroma and nothing good was coming out of it. We wanted to see if she even had a chance at survival, we wanted to read stories of babies with Cystic Hygroma and the possible outcomes that could arise. The doctors gave her another week or two before she would pass, but we never gave up hope on her. She fought right along side with me. Growing at a great rate, her heartbeat was normal, she was thriving other then the Cystic Hygroma.

We had a CVS completed at week 16. A prenatal test that is used to detect birth defects, genetic diseases, and other problems during pregnancy. The wait for those results took what seemed like forever. All came back normal, but doctors kept insisting that she had to have a genetic or chromosomal abnormality. We went and got all of my genetics tested (500 of them to be exact), we also had a Noonan’s syndrome test sent out. Noonan’s is rare but they were sure that she could of had this. We then decided to get a second option at CHOP in Philadelphia. I made the appt and they got me in within the week. At this point we were still in our waiting period for the Noonan’s testing.

At 17w4d we had our appt with CHOP. That is when our whole world changed with our daughter. They had said her entire body had been filled with fluid. She was swollen, she now had Hydrops in 4 different parts of her body. Her heart was normal, she was still growing completely normal, she was still moving all over and her heartbeat was strong. The doctors had expressed to us that this was more then likely either because of possible Noonan’s syndrome, or she had been affected by a virus that I caught during pregnancy. She then stated that I should immediately be tested for the three viruses that can cause issues with a pregnancy, Parvovirus B19, Toxoplasmosis, CMV (Cytomegalovirus) and go from there, but with them there was nothing they could do for her at this point. We left extremely overwhelmed with this new dignosis of hydrops. We knew she could be terminal but we thought we could of been out of the woods considering she did not have hydrops this entire time.

We got bloodwork scheduled that week from my OB. We got the news back within 2 days. At this point we were about 18w6d weeks pregnant when we found out that I had gotten a primary infection of Cytomegalovirus during right before pregnancy or in the beginning of my pregnancy.

We of course dove into “HOW” this could of happened. The doctor said that I could of gotten this from anywhere, even touching a door handle at a grocery store. I was definitely on a mission then at that point to see if we could do anything to help save our daughter. I joined Facebook groups for Cytomegalovirus and got ahold of a few women who have gone through this whole process. The fact that we were finding out so late in our pregnancy made me mad. Why wasn’t I tested sooner? Could I have stopped this from happening if I had been tested sooner? Could we have stopped her from being so ill if we had tested sooner? What types of medications could we do or try? These were all questions I was going to have answers to at our 20 week scan. Which I was extremely excited and nervous for but we had not seen our girl since 17 weeks.

We got the dignosis right around 19 weeks for CMV. Our CVS results all came back normal for all genetic abnormality, yet we were still waiting for the Noonan’s, but having this CMV dignosis, all the doctors knew that this was the cause.

We had a check up at the OB on January 7th 2020. We heard her heartbeat (130bpm) she was moving, all seemed good. Our 20 week appt was for the 9th so we only had two days to wait to see our baby girl again. I was so excited.

The following day our daughter’s journey ended. On January 8th, 2020, Eleanor had passed away while still in womb. I knew something was wrong, I didn’t really feel her movements that whole day (she was regular by 16 weeks) so we went to the hospital. The nurses came in, attempted to find her on the doppler and couldn’t. I wasnt worried though because we had just heard her heartbeat the day prior and with everything going on my placenta hid her before and due to the increased hydrops my placenta was sick. They shrugged it off, said that they could get the doctor to come in and do a quick ultrasound. My brain was trying not to panic. Especially since this just happened to us last week and she was totally okay. The feeling I had though, I just knew something wasnt right. The doctor came in, put the monitor on me and her face went blank. “Your daughter doesn’t have a heartbeat”.

I looked and watched her move the wand around showing Eleanor and her little body but nothing was there. No movement, no heart flickering. Nothing. Our daughter was gone.

My heart sank into my stomach. I could feel my anxiety rushing in. We very well knew that Eleanor’s time with us could of ended early, but you never expect it when it happens. We had just heard her, how could this be? Why was this happening to us? Why her? I cried. The nurses were so supportive and understanding. The doctor then said they were going to have the on call OB doctors come in and meet with us. Two doctors came in, did the ultrasound again, this time I couldn’t look. They confirmed that she had passed away and gave us time to digest what was going on. We got our options and went from there. What else could we do? We couldn’t bring her back and it was absolutely the worst feeling in the world leaving that hospital that night. Having to go back then to have our baby was even harder.

The following few days we got results back that our daughter had passed away from CMV. She did not have Noonan’s syndrome, she passed the testing. Our daughter passed away because we were not tested prior to pregnancy and/or during early pregnancy. Our daughter passed away due to the fact that the hydrops had filled her tiny body up and she could not survive any longer because of this virus. The week leading up to her birth, my husband and I were able to say our goodbyes. We were able to grieve a little bit. I took photos of my belly and had her with me as long as I could.

On January 16th, 2020 Eleanor Jane Uskuraitis came into this world sleeping. She was 10.5 oz. Our baby girl was loved by so many. We got so much support from our family and close friends. Her tiny footprints remind us everyday that she is and forever will be apart of our family. She was our baby. Saying goodbye to her was the absolute hardest thing we had to do. Knowing that we would never see her again, knowing that we would not be bringing our baby home was the hardest. That drive home was absolutely awful. We are however thankful for our time with her and I am so happy that I got to experience her life inside me.

I am writing this to spread awareness, to make sure that my daughter’s life will continue to make a difference. To start a CONVERSATION about Cytomegalovirus. I had no idea about this prior to my dignosis. There are ways that you can avoid getting CMV (cleaning hands, not sharing food with young children). Most women don’t even know that they have had CMV prior to pregnancy. Doctors don’t actively test for CMV unless necessary or asked by the patient. It’s a simple blood test.

(https://www.cdc.gov/cmv/overview.html)

Thank you for allowing me to share our daughters story! It gives me pride to know that talking about her and sharing our journey with others will open up doors about CMV. We know she is in heaven looking down on us along with her sibling.

With love, Thea and Lenny Uskuraitis

#CMV #Cytomegalovirus #RareDisease #Parenting

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