Life a bitch…

So, it has been a long time since I posted. The last post I told you about having to go to the hospital and finding out I had a heart problem. The lining of my heart was collecting too much fluid. It’s been a rough few months and I want to share it with you.

I have been feeling exhausted for a while now. I mean I barely made it through work and then slept as soon as I got home tired. I slept all weekend as well. I started coughing in August and by October it had not stopped. On October 22nd (2 days after my birthday) I coughed up blood. I went to the doctor and he sent me for a chest X-ray. In the X-ray it looked like my heart was enlarged. So, he sent for an echocardiogram.

I went for my echo and the tech had me wait while he showed the doctor. I thought that he was just being nice. It turns out he has been doing this for 25 years and saw something the doctor needed to see right away. The cardiologist called my doctor and they told the tech to tell me to go to the ER right away. As you can imagine they freaked me the Hell out. I called my boss and my Dad on the way to the ER.

After the ER doctors got my results from the test a cardiologist came down and told me my heart looked enlarged because there was a build up of fluid in the sack around my heart. It was a lot of fluid and they were very concerned it would put pressure on my heart. If they didn’t remove it then it could stop my heart.

I got checked in. They told me I had to have a procedure to remove the fluid. There are two ways of doing that depending on your condition. Most common way from the outside of your body put a needle through to the sack and drain it. Then a little more invasive cut you open and put the needle through the sack. To know which one they needed to do they sent me for a CT scan.

After the CT scan I got a visit from three different specialist. First my cardiologist who got to give me the news. Then a pulmonary specialist. Then a thoracic surgeon. When they looked at my CT scan they saw a mass in the chambers of my lungs. The cardiologist said he only knows heart stuff. The pulmonologist said that is might be that the lymph nodes are infected or enflamed. The thoracic surgeon asked me they same questions they did, but two or three times like my answer would change. He talked to me about different types of autoimmune diseases. Then he brought up cancer and told me not to worry they partner with a hospital that is great with cancer treatments. He was they only one to bring up cancer. They all agreed I need a biopsy. So after draining my heart sack the hard painful way I got to go home for a few days before my biopsy. By the way they drained two Coke cans worth of fluid from that sack. I saw it when I woke up in the OR. It looked like a pitcher of beer.

To do this biopsy the put me under and put a special tool down my throat. It had a cutting tool and camera. They took just a little piece of it. The doctor told me it would take a week for the results. They all were hoping by testing the fluid and this biopsy they would find out why my pericardial sack was building up so much fluid.

It didn’t take a week before one important test came back. In fact it was the next day when the doctor called to tell me it was Lymphoma. After that everything just felt like I was on a speeding train. I had no control and it felt like no say in what was happening. I got a call telling me I had an appointment at another hospital with an oncologist.

Then I got a call that I also had an appointment with another doctor also at the cancer center the same day, but an hour before. Then I got a call saying early that same day I had a PET scan scheduled. My Dad looked up the other doctor after I told him they didn’t tell why I was seeing him or what his specialty was. Turns out he is a thoracic surgeon that specializes in doing lung biopsies. His name is Dr. W for this.

Dr. W told me I was going to get a Port put in. You see I have horrible veins. My stay at the first hospital was torture. My arms were covered in bruises. A port is something they put in your chest under the skin. It is connected to veins in your body. For me my juggler vein. They can just poke a needle in the port through your skin. Then they can either get blood or medicine can go through it. So, it’s a less painful IV that is always with you.  He  told me the oncologist I had not seen yet night want another biopsy that was more invasive. He would cut into my side and go up into my chest. Dr. W also informed me I might also get a bone marrow biopsy.

Next was the oncologist Dr. K. She told me I have Non-Hodgkin’s Lymphoma. There are different kinds and to know which treatment to give me they need to know which one it is. So, I did get a bone marrow biopsy that day. Fun surprise! Also a lesson this whole thing has taught me is when a doctor says it will only be a little pressure they mean excruciating pain. I ended up also getting the other biopsy as well. All the bone marrow told us was it had not spread to the bone marrow. With the big biopsy they will be able to break it down and get it’s DNA. Which is what Dr. K was trying to get. The DNA of the cancer will tell them what type in is. Also when they were doing the big biopsy Dr. W had to cut open the pericardial sack to empty the fluid again because he couldn’t get to the mass. When he did he found more tiny tumors in the pericardial sack. Yeah more cancer!

Primary mediastinal large B-cell lymphoma is what I have.Or PMBCL for short. Stage 1 if it wasn’t for the tumors in my pericardial. That makes it stage 4. PMBCL is a rare type of non-Hodgkin lymphoma (NHL). It mainly effects young adults and is more common in women. If caught early chemo will knock it right out Dr. K told me. If it’s not caught early there is nothing that can be done. But yeah they caught mine early!

On January 16th I will be going back into the hospital for my third round of chemo. I will be getting six rounds of chemo. I have to be in the hospital for five days each time. My next blog will be about the emotional side of all of this. ‘Being Bipolar with cancer.’

Life & the crazy things it does….

I’m not sure if this has anything to do with being Bipolar or not. Maybe it is, I don’t know. This is my life right now. For a year now I have been having shortness of breath which has gotten worse. Three months ago I started coughing and I haven’t stopped. I have been to the doctors for both of those things. My doctor sent me to the pulmonologist for the shortness of breath. They said maybe allergies. My doctor was in a really bad car accident, so we never followed up on that. I went to a different doctor when she was out about the cough. That doctor gave me an antibiotic and said if it didn’t work it might be allergies.

On October 22nd two days after my 36th birthday I coughed up blood for the third day in a row. At first it was specks of blood, but this time it was a lot of blood. I took a picture and sent it to my Dad. We tease him all the time that he thinks he is a doctor. I wasn’t really being serious. He freaked out and made me promise to go to the doctor. Since I had the day off anyway I decided to humor him. He thought I had a blood clot in my lung. Over dramatic much.

Neither one of the doctors I normally go to had appointments. I saw a guy I haven’t been to in a while. He makes me feel like a hypochondriac. I told him about the cough and what my crazy Dad thought. We kind of joked about my Dad. He said we take blood to show your Dad it’s not blood clot. We talked about my acid reflux. We both agreed that it might be were the cough and blood is coming from. Awesome, reflux medicine. I have wanted that for a while. Before I left I asked if he wanted to see the picture of the blood. He was like sure why not. I showed him and he ordered a TB test. Also on the safe side a chest x-ray.

I left there feeling pretty good with my acid reflux issue handled. I go get the chest x-ray. The doctor calls just as I’m leaving work, so I miss his call. My lungs look great. Awesome! But he wants me to call him back to discuss something they saw on the x-ray. It was the end of the day so the office was closed. I returned his call after a stressful night. I was at work. Just stepped outside for a quick call. He said I had a chest x-ray two years ago that the radiologist compared to my current one. My heart is significantly larger then it was two years ago. I talked to him more about the things I have been going through for a year. Including chest pain the goes down my left arm lasting two days that I thought was really bad heart burn from garlic.

He has me schedule an appointment for an EKG later that morning. I was fine. I promised my Dad I would let him know what the doctor said, so while I was out there I called him. That is when I broke down. My Dad offered to go with me to the doctor. Then I called my Mom and a coworker was just getting to work. She saw me standing outside crying on the phone with my Mom. She went and let my boss know. I asked a friend/coworker to come outside for minute. She did and then my boss came out too. They both hugged me and I told them what was going on.

My work family is pretty great. They had me go sit in one of the exam rooms to calm down before I went home. A few people came in the check on me. My boss boss came in too. We talked, and she tried to help. It was all very sweet. One of the nurses who is a friend came in when she heard I was upset. She sat down in her way and was like “ok tell me what happened’. In just a few minutes she had me laughing. Abby is great, and we have the same dark sense of humor. She likes to startle me a lot. I keep telling her she is causing damage to my heart every time she does. When I was waiting on the phone for the appointments person and the news hadn’t really hit me yet I was thinking ‘I’m going to tell Abby it is all her fault, and I told her she was doing damage to my heart.’ I told her that and she burst out laughing. Thank God for Abby. She calmed me down enough so I could drive home.

My Dad decided to drive me to the doctor instead of meeting there just in case it was bad news and I couldn’t drive home. My EKG was normal. He had me walk around the office a bunch of times then checked my oxygen. My oxygen levels were great, my breathing not so much. So, we ruled out my lungs being the cause of my shortness of breath. My lungs are getting oxygen just fine. He referred me to get an echocardiogram which is scheduled for November 7th. After that I will go for a consult with a cardiologist.

My boss boss said yesterday that I am handling this so much better. I said yeah I am. What am I suppose to do? Sit and cry at my desk all day? I have a job to do. Life goes on. You put on your work appropriate mask and do your job. I’m still freaking out, but after years of pretending I’m ok I know how fake it. If I can go to school or work when I’m depressed then I can go when I am stressed out of my mind. The thing I’m scared about most is all the medical bills in my future. I’m going to fucking need my job. My mask is hand crafted over many years. First comes the freak out then comes the mask.

In some ways I think being Bipolar has prepared me for so many things I never knew were coming. The strength I have built over my life to fight my own mind has made me strong to fight this too. I have my family. As soon as I found out I went to them. When I was falling apart at work I asked a friend to help me. I had a good cry then I had a good laugh. I am strong enough to get up everyday and keep fighting. It doesn’t matter what I am fighting, I know I have the strength and the support to do it.

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Agree to disagree…

This all started with something I said at work today I shouldn’t have. We were talking about a woman who has been to the office many times and her behavior when she has come in. She has some serious rage issues and many other things. As someone who has a mental illness it was insensitive for me to say she needs to be on meds. I stand by my statement because this woman does need to seek professional help. I do not have an MD, PHD, or any fancy letters behind my name to back up my statement. But I have been reading psychology books since I was 11. The behavior she has exhibited shows there is something wrong with her. I really hope she gets some help.

My statement was uncalled for, but that is not the point of this blog. What I want to write about is the statement my coworker made in response to mine. She said. ‘People shouldn’t take medication it just makes them worse.’ I reminded myself I was at work and kept my mouth shut. If I had not been at work this is what I would have said.

‘A person who does not have a mental illness should not make a statement about if taking medications help or makes the problem worse. I from personal experience know that these medications work. I’m sure a person with schizophrenia who no longer hears voices in their head telling them to kill their parents would agree with me. You can’t make that judgement with out having that experience. Would you tell a person with cancer not to take medication. My friend has a heart condition and if she doesn’t take her medication it will kill her. I fully support anyone who treats their illness the way they want, but I don’t believe you should tell others how to treat theirs. Let’s agree to disagree.’

She is from Vietnam and that is part of her culture. I understand that, but that is one big thing I take issue with. Especially since it is something she has said to me before when I have taken something for my migraine. I have chronic migraines that get very bad. If I don’t take something I will have to have someone come and pick me up and take me home. I respect that she doesn’t take medication. She had a bad cold once I said if you are that miserable you should take some cold medication or go home. She told me how she feels about medication and I said okay. People should be able to treat their illness in the way they feel is best with out judgement. Not with drugs and alcohol of course. I don’t even say anything about treating certain illnesses legally with pot. That is up to that individual person.

The point of my rant is that it upsets me when people say that people with illnesses mainly with mental illness should not be treated with medication. I definitely don’t agree that it doesn’t work. I am living proof that it does. Medication is not for everyone one, but don’t spout your opinions as fact. There are times that medications made someones condition worse, but only because they weren’t the right ones. Find the right one and it works great. I do believe we are an over medicated nation. I have very strong opinions on ADHD diagnoses and the over prescribing of those medications. Unless asked I keep them to myself.

It is okay to have opinions, but don’t tell me something you don’t know anything about doesn’t work. I can give you testimonials of a lot of people it does work for.

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Walk of Hope

Two blogs in one night!!

I was already planning to do the blog I just posted, but I wanted to talk about this too. Last Sunday I did the Walk of Hope. For the last 30 years in the city of Raleigh they do a 5 K for charity. What cause is it you ask, mental illness. The company my Dad works for has been one of the sponsors for years. He said it never occurred to him to actually sign up before. My excuse is I didn’t know anything about it. This year he signed us both up.

It was held at a very popular restaurant here in Raleigh, North Carolina. The place has a lot of room for booths, games for kids, and food. The booths were different places like NAMI and psychiatric places. One was the places was where I go to get my medication. There was also a mental health man that is the creepiest superhero ever. He gave me a lollipop that I didn’t eat. People could eat and play games while they waited for the 5 K to start.

Exercise is not my thing, but I have always liked walking. It clears your head you know. It was two of my favorite things walking and hanging out with my Dad. We walked all 5 miles. I am so proud of us. They said we could turn back anytime we wanted to. There were cars that would pick people up. My Dad asked me a few times if I wanted to turn around, but I wanted to do the whole thing.

I put on my Walk for Hope t-shirt and proudly walked those 5 miles. It was for a good cause. One I truly believe doesn’t get enough attention. The money went to help people with mental illness and our walk was on the news. People saw us standing up and saying people with mental illness need help. No more shame and whispers! Let’s talk about mental illness. We are not helping anyone by not talking about it.

I swear my jaw dropped a couple of weeks ago. A former coworker of mine had gone on the news to talk about suicide because her husband committed suicide this past year. She wanted to talk about it so she could help other people. I only know that she did this because another coworker brought it up. “She wanted to talk about what happened to her husband.” Her words. One of the new girls asked what happened to him. I said he committed suicide. My coworker telling the story says ‘shh don’t talk about that’. Jaw drop. WTF! Is that not the point of you telling us this. She wants to talk about her husbands suicide to help others. Not talking about it doesn’t help anyone.

Not talking about it makes people feel ashamed. If they feel like they have something to be ashamed of they won’t go and get the help they need. We should talk about it. She had no idea her husband was suicidal because he didn’t talk to her about it. Her husband is gone and her daughter doesn’t have a Father because he didn’t feel like he could talk to someone about his pain.

The Walk of Hope is a good way for people to start to talk about it. This is 2018 we aren’t locking the mentally ill in attics, prisons, and horrible hospitals anymore. We have so much more knowledge then we used to. We have medications that work. What we don’t have is an open dialogue about it. We have people who need help, but don’t know how to get it. They can’t ask because we aren’t allowed to talk about it.

All the people who came for the Walk of Hope gave me hope that things are changing for the better.

Too young to be this mature…

There are people who circumstances in their lives have caused them to grow up faster then they should. Health issues like mental illness can be one of those circumstances. I know it was for me. Not that being mature at a young age is all bad. I’m glad I got to make decisions about my own life. I was talking to a coworker last night about a 9 year old girl diagnosed with Schizophrenia, and how horrible it was that this girl won’t get to have a childhood. Her life went from dolls & sleepovers to doctors & pills.

I was young when I started suffering from depression. I was diagnosed at 11, but I had been suffering for longer then that. There are a lot of things I feel like I missed out on. I also had to make decisions about my life and future that kids shouldn’t have to make.

I had friends that I spent time with for the most part. It wasn’t until I was a teenager that I started pushing them away. There were normal kid things I couldn’t do. One example was sleepovers. My anxiety would never let me do sleepovers at someone else house. At first I would just be really anxious and not enjoy myself. Then I started calling my parents to come pick me up because I was feeling sick (from anxiety). Then I just stopped going. I feel like anxiety caused by depression kept me from enjoying a lot of things until the point were I just stopped doing them.

My sister has never really understood what I go through and most of the time doesn’t seem to care. One time she was giving me a ride home after a family event and the subject of having kids came up. This was one of the few times my sister would say she was proud of me in relation to anything I’ve done about my mental illness. You see when I was young I saw an episode of the show ‘ER’. On the show a one of the nurses had a Mother who was Bipolar. The Mother was played wonderfully by Sally Field. The nurse was talking about how hard her childhood was growing up with a Mother who was Bipolar. Sally’s character stopped taking her medication to have her two children and never went back on them. Which we all know happens a lot.

That really made me think. I asked my psychiatrist about it. He said doctors do not recommend women who are Bipolar to have children for that reason. After a lot of thinking I made the decision that I was not going to have children. I was only 15 years old at this time.

Now here is my reasoning behind this. First off I would have to go off my medication. I don’t want to go off my medication. It makes me better. Then if I’m off my medication I’m going to be depressed and manic plus pregnancy hormones. Pregnancy hormones make women crazy enough I’m pretty sure you would have to lock up one who was already crazy before the hormones. If you don’t get back on your meds then what kind of parent can you really be.

Even if you are able to think clearly enough to say hey I want back on my medication now there was still one thing I know that would kill me. Passing this shit down to my kids and grandkids. My parents had to watch me suffer and I had to watch them suffer too. Think about it, the reason I have gone through the Hell I have gone through is because of them. My Father has Bipolar disorder on his side of the family and my Mother has depression on hers. I get my crazy from them. They had to watch me be tortured by my own mind since I was 7 years old and not be able to do anything to stop it. They couldn’t stop it and it came from them. When you love someone as much as a parent loves their child it is excruciating to know that you had something to do with their pain.

I know it’s not there fault. But how can you not blame yourself. I know that I would blame myself. Just thinking about the possibility of passing it down to my child breaks my heart. I don’t want another child to go through this especially my own. There is a GOOD chance my child would have some mental illness. I worry everyday about my nieces and nephew.

As far as I know on my Father’s side of the family his grandmother and aunt were Bipolar. My Dad has been diagnosed by one doctor with Bipolar disorder, but told it’s just depression by another. My mother has depression. I think her mother had something most likely depression. Her brother had depression, learning disabilities, & substance abuse problems. He died of an overdose on his youngest sons 1st birthday. Her other brother joined a cult and is weird. I’m not sure if he has a mental illness, but I wouldn’t be surprised. His cult doesn’t believe in that stuff so we will never know. My oldest sister has anxiety. (She claims that’s why she is a bitch.)

So, the percentage is pretty high that the next generation will be crazy. I think I made the right call. Back to the story I was telling about my sister. She said she was proud of me for making such a tough decision when I was so young.

When I was 23 years old and was told I couldn’t have kids because of my PCOS I was okay with that because I already made that decision. At 36 years old I cry every time someone I know has a baby. I mean on the bathroom floor ugly cry. Even though I made the right decision it was my choice. My choice got taken away from me and that is what hurts. At least when it was my decision I felt strong, but now I just feel broken. God apparently agreed with me about the whole kid thing. I still want to be a Mom. I hope someday I will have enough money to adopt a child or two. They will be loved. I will also be on my medication, so my crazy will be toned down a lot. I’m not perfect I will be still a little crazy, but in that embarrassing Mom way. Like mine.

I didn’t want to grow up that fast, but I did. It took a lot of strength to be that mature at such a young age. It takes a lot of strength to still be that mature.

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Mentally healthy or physically healthy

Why is that something anyone should have make a choice about? I have asked myself that many times over the years. I have had this conversation with more than one psychiatrist/psychologist. The medications we take have harmful side effects. Some are simple ones like body acne or dry mouth. But there are some that can cause some serious stuff.

I was on Depakote from 16 yrs old to 23 yrs old. My doctor gave me all the normal warnings about side effects. I got lab work done on a regular basis for my liver and kidneys. They do a lot of studies on medications. Some big and some small. Sometimes doctors don’t always know if they should mention some of them when prescribing these medications. When I was 23 I went to my regular doctor about red marks I had all over my body. The nurse asked the normal questions. When was your last period? 4 months ago. My doctor who has known me since middle school comes in and says “Did you tell the nurse you haven’t had a period in 4 months?” She knows I wasn’t sexually active so obviously that was something she was concerned about. I just thought it was awesome not to have a period for 4 months. She did blood work that told a very interesting story.

My thyroid levels were so low it was barely working. My Progesterone levels were almost nonexistent. The red marks were internal bruises caused from my white blood cells attacking my platelets and making them burst. I now have a hyperimmune system. The Depakote was causing my Endocrine system to shutdown. It also caused Polycystic ovary syndrome. My Dad came with me to talk to my psychiatrist about it because my primary doctor thought it was the Depakote. When we told him what was happening to me he said there was one small study done where when Depakote was given to teenage girls that this happened. I started Depakote at 16 yrs old.

I took Thyroid medication for years and now that is under control. It is always low normal, but it is normal. When ever I am stressed or am exposed to a lot of germs my immune system will over react and start attacking me instead of germs. I also can’t have kids. It was a small study and years later they did a bigger study. My Dad had a coworker whose 16 yr daughter was Bipolar. They put her on Depakote. My Dad told this man to have them also check her hormone levels after what happened to me. Sure enough after only a few months on it her hormones levels started to drop just like mine.

I was very happy on Depakote. I pulled my life together and accomplished so much. It is a great drug for treating Bipolar disorder. There were a lot of benefits from it. When I tell this story people ask if I think it was worth going through all of this just for the benefits I got for 7 yrs. Yes. Yes, I do. There was a very bright light at the end of the tunnel for 7 yrs. I grew as a person. The mental anguish I had suffered with for so long had lessened. My friends were seeing my face again for the first time in so long. I got a job, made new friends, and got my drivers license. I felt human again. Life didn’t seem impossible anymore.

Lithium has pretty crappy sided effects. Also you can’t do or take anything. But it helps me in more ways then anything I have taken. I can’t go out in the sun or do anything that could cause me to get overheated. Including drinking a hot beverage. No more really hot showers. No caffeine or alcohol. The only thing I can take for pain is Tylenol. Every doctor I go to thinks I’m difficult to prescribe medication for. The list of things you can take with Lithium is shorter then the list of things you can’t take. But do I think it is worth it? Yes.

I made a decision a long time ago that I would rather be mentally healthy then physically healthy. Why? Because if you are physically healthy, but can’t enjoy it then what is the point? To me being of healthy mind is more important then a healthy body. If I can’t have both I choose healthy mind.

The things these medications do to us suck,  but when I am on them I have a lot more days where I don’t want to kill myself.

Now I just want to say that even though I don’t regret going on the Depakote, I don’t recommend any teenage girls going on it. My experience also helped someone else. My Dad’s coworkers daughter would have gone through all of this if I hadn’t already gone through and my Dad was able to warn them. The new studies prove that this happens a lot. There is a link between teenage girls taking Depakote and PCOS.  I don’t regret it, but I don’t recommend it. Depakote is a great medication, just not if you are a teenage girl.

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A great support system..

Everyone needs a great support system. I am very lucky that my parents have always been supportive. Mental illness runs in my family unfortunately for all of us. My Mother suffers from depression. I’m not sure when she started having symptoms, but from things we have talked about it seems like we were around the same age. My Dad thinks she suffered postpartum depression. She disagrees, but that is not important. Because of his concerns he started reading up on depression. In trying to help my Mom he also helped me. When he was reading about depression he started to realize that I was suffering from it as well.

Both of my parents are very supportive, but I have to say I don’t think I would be where I am in life if it wasn’t for my Dad. He never gave up. As hard and time consuming as it was he never stopped trying to help me. The most important thing was he always listened to me. If I didn’t feel comfortable or didn’t like one of the doctors we would find another. I went to a lot of different doctors until I found one that worked best for me. We both loved her.

My Dad made sure I took my medication. We even tried different natural treatments he read about. By the way St. John’s Wart smells like a dirty fish tank and doesn’t help with depression. When one medication didn’t work we were ready to try the next.

There was this one doctor I saw I don’t remember his name, but my Dad I and both thought he looked like Nikita Khrushchev with a beard. (I was homeschooled and we were studying Russia.) I didn’t feel like he listened to me when I was talking. Also he picked his nose during a session (Gross!). I stopped seeing him, but had not found another doctor yet. I was taking Effexor at the time and it ran out. My Dad asked for a refill and he said no. It is a big mistake to tell a parent that you are going to let their child run out of medication which will put their health in jeopardy. Especially my Dad who is super protective and has a brother who is a malpractice attorney. He gave me a refill.

Since I was having a lot of trouble finding a psychologist I liked, when we decided to try the one my psychiatrist recommended my Dad went to the first appointment alone. He wanted to meet her first and get a feel of what she is like. I remember her telling me once she remembers that appointment very well. LOL! My Dad is hard to forget. He was the perfect combination of support. He gave me space to do it my self, but would step in when I needed him. He still does.

In some ways my Dad is my super hero. It is hard to fight alone, but I’m lucky because I know he will always fight with me. Our relationship isn’t perfect, but no parent/child relationship is. One thing I do know is that my Dad loves me. I know that he will always support me and is proud of me. My parents are my biggest support system. I am thankful for them everyday. Even at 35 years old when I feel like having a melt down I know I can call one of them and they will help me get through it.

One of the things I want to accomplish with this blog is to help people that don’t have support system. I want to help people find one. With me or with each other. I don’t want anyone to go through this alone.

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