Shwachman Diamond Syndrome

Hi,

I have been with my job for 7 years and today my supervisor pulled me aside to discuss my behaviors… and it’s my last warning before I could get fired…
This was the email.

We have seen a pattern of unsatisfactory behavior starting in June when a special scheduling did not work out, and I ended up having an anxiety attack which led me to the ER. 9/29/2023 when you came in for an extra shift you picked up but you did not have enough sleep and broke down, patients and other team members heard this. On 10/6/2023 during our PAS meeting about changes to SDS not moving back but rather stay in the location they are now, you broke down, Crying and yelling where patients could hear you. On 10/16, I sent you a patient comment from the NRC about how you treated a coworker in front a patient. As well as the recent incident we discussed from 10/18/2023 where you were observed and perceived by others as not being kind and were verbally abrasive when explaining a situation which resulted in a patient crying.

My doctor got me in last minute for tomorrow… I thought my meds were working otherwise. My supervisor knows of my mental health and keep bring up that it might be my meds because I started new meds.

I was diagnosed with ADD, bi polar, depression and anxiety.

I hate this feeling like I’m going to lose everything from my mental health.

Any comments suggestions would be appreciated.

Thank you.

In July of 2002, I was drugged and brutally raped by Jeremy. I had considered Jeremy a good friend and brother figure for several years. We had never dated and were only friends. We lived next door to each other for awhile, worked together at SDS and I considered his parents to be family. He was at my house with my roommate and myself. We had all went out to dinner and were going to my house to drink and watch movies. The plan changed when my roommate left to go to her boyfriends, leaving Jeremy and I alone. We had all bought some beer and wine and were going to watch a movie. I had one glass of wine and Jeremy had several beers. He wanted more beer and called his friend Steve to bring more beer to the house. After Steve arrived, Jeremy poured my second glass of wine. After this my memory is almost nonexistent, with an exception to the images of him raping me, that pop into my head and send me into a panic attack without any warning. The next morning after having been raped, I woke up and was in extreme pain. He raped me vaginally and anally. I was bleeding from both my vagina and rectom. I could barely walk or sit for about a week. It was horrible. He told me the next morning how much I had enjoyed it and that he loved me.???? I was so confused about what happened and thought it was my fault. I was not able to talk about the rape with anyone for a few months, because of the shame, pain and humiliation. I went to the health department the next day and got a morning after pill since I didn’t know if he had used a condom and was tested for STD’s several times after the rape. I was so ashamed of what had happened. I was destroyed emotionally and mentally and did not leave my house unless I absolutely had to for over a year. I just couldn’t make myself. I turned into a recluse and started to fail out of college. I was always terrified I would run into him. He stole my happiness, peace and will to live. After the rape he terrorized me by showing up at my house in the middle of the night and destroyed the hay fields the house was surrounded by with his girlfriends car. A Subaru. I had called the police and made a report, called my landlords and called his dad. I asked him if Jeremys car had hay and mud on it. It did. It was also missing a bumper that was found at the top of my driveway. My landlords pressed charges on him. I slept with a shot gun next to my bed for almost two years after being raped. I was terrified He would come back and hurt me again. Several months after being raped I saw him at the Bingen Superette. He actually apologized to me for raping me.???? My entire body revolted at the sight of human and I was shaking. I remember the encounter so clearly and how I felt. I was so terrified and angry. I don’t remember if I even answered him. I remember getting back in my car and leaving as fast as I could. I saw my friend Heidi right after this encounter happened and broke down and told her everything. I was hysterical and felt like I was losing my mind. About 5-6 years ago he sent me a message through messenger saying how sorry he was for raping me. I hated him for what he did to me then and how it was affecting my life. I was suicidal afterwards for about a year. I contemplated many different ways to commit suicide. I didn’t know how to deal with shame and pain that was destroying me. I thought everyone could tell what happened to me and I constantly felt shamed and humiliated. I relive this rape still. I have PTSD from him raping me. I have nightmares about him raping me on the stairs, in my roommates room, my room, etc. I sink into a deep depression when I have flash backs and nightmares. I don’t know where Jeremy is now, but I hope he fucking rots in hell. I hate him. If I ever see him again, I know I will go to prison and it will be well worth it. I won’t have any regrets. He took everything from me. He changed the course of my life, my mental health, my joy and happiness. He stole so much from me that night and I will never fully recover from it. I have been in counseling trying to figure out how to get my life and joy back, almost 20 years later. I am finally taking my power back and am stopping being his victim. I am a rape survivor and I am taking back my joy and happiness again, 20 years after him raping me. He is a monster. You should also know that I am not the only person he has raped. There are others.

My daughter is now 15 years old and has only just been diagnosed with SDS, she was misdiagnosed 4 times throughout the years thinking she had PCD and possibly CF. Leah is only 4’8” and weighs 5st 6lb , she was born on 0.4 centile, and at 4 weeks old nearly passed as had pneumonia. She has suffered over the years with severe chest infection, urine infections, ear infections etc. She is always tired and a lot smaller than her 11 year old sister. We do not know anyone who has been diagnosed with this before and am looking for a support group or other patients with this so we can understand it all a lot better. My daughter is very caring , kind hearted and a wonderful daughter she is also struggling in school especially in English and maths. I just want to ensure we are getting the correct care for her.