Doctor's Appointment Today

I had my Doctor's appointment today. Tests results for the Exercise Stress Test and Sleep Apnea Test Came back. Exercise Stress Test: negative. Sleep Apnea Test: negative. The Sleep Apnea Test Results said I had mild difficulty breathing while sleeping but not enough to have obstructive sleep apnea. I told my doctor that's probably because I sleep on my stomach with my face jammed in the pillow haha. He just gave me a side eye look. One day I will make him laugh, one day. So I still don't know what is causing my extreme exhaustion and shortness of breath. He is going to send me for a Pulmonary test and a CT Angiogram.

It's really frustrating because I finished my group therapy program in September and was ready to move on with my life. I have been taking Celexa for depression; between the group therapy and the Celexa my mood has been great. I want to feel healthy and be functional. Just have to keep trucking along. If it wasn't for the group therapy, I probably wouldn't be advocating for my health like I have been. I have been going to the doctor regularly for the past three months, trying to figure this out. Hopefully we will figure this out soon,I really don't like sleeping my life away.

Tired....

Tired of being tired. Tired of being short of breath. Tired of sleeping all the time. Tired of the weird numbness and weakness. Just tired of feeling broken. Tired. That is all.

Maybe it's MS... I don't know

I have been feeling extremely frustrated lately. I know I previously wrote about the weird symptoms I have been having, but I feel like I need to write about it again because I am feeling angry and frustrated. Starting in September I started having issues with fatigue. It is so bad now, I feel like I am sleeping my life away. I sleep 4-6 hours in the afternoon and then I have no problem sleeping my normal 7-8 hours a night. I become short of breath easily and feel exhausted doing something as simple as laundry.

In October, I woke up one morning and had numbness on the left side of my face and my left arm felt slightly weak. I went to work and got off at noon. I went to Arby's and I was sitting in a booth eating my food. All of a sudden my hands wouldn't do what I wanted them to do. I was trying so hard to pick up the sandwich. I couldn't pick up the sandwich. I was trying not to cry, I didn't understand what was happening. I finally sort of picked up the sandwich, I tried to bite it but my mouth wouldn't work, I could barely bite and chew. All of a sudden my hands and mouth were working but then I felt really dizzy, nauseated and out of it. I drove home and walked in the door. My roommate looked at me and asked what was wrong. I knew what I wanted to say but the words wouldn't come out of my mouth. I finally spit out my brain isn't working. My roommate looks at me concerned and says what happened. I try to tell her about the Arby's incident and my hands not working. My speech is slurred and I am struggling to find words and talking slow. My roommate says I think your having a stroke, I'm taking you to the hospital. They kept me in the hospital overnight for observation. They did an MRI and CT scan and I didn't have a stroke. They did a whole bunch of blood tests - everything is normal. The Senior Neurologist says your probably having a Migraine with Aura. I say but I am not having headaches. She tells me that can happen. She tells me to go back if the symptoms don't go away or if they get worse. Two days later I go back because the numbness has spread into my ears, scalp and left side of my neck and the nausea is really bad. The doctor gives me an anti-nauseant and migraine medications through an IV. The symptoms get better, I just have a little numbness in the left side of my face. He gives me a prescription and sends me on my way. I'm driving home and the numbness comes back with a vengeance. It's in my jaw, I can barely move my mouth. Fuck the medications made it worse. I am angry and go home to bed. The next day I get up and I decide to fill the prescription, hoping it will help. I take the medications for a few days and it just makes things worse. I stop taking them. I meet with my family doctor, tell him what happened and he prescribes me Flunarizine a migraine medication they use when other medications don't work. I take it for two weeks - it doesn't help at all. He tells me to stop taking the medication. At my last appointment, this past Tuesday I tell him I really don't think this is a Migraine with Aura - I am not having headaches and this is going on almost 2 months now. I tell him my hands keep tensing/seizing up, I am finding it really difficult to do simple tasks like remove a paperclip or button up a shirt. I tell him my left leg keeps tightening up / moving.  He looks at me and says I'm sorry I don't know what this is. I ask him should you refer me to a neurologist? He says honestly, not right now, you just had an MRI and CT scan they won't do another one until it's been at least three months since the last one. He tells me to rest. That's all I do is rest!! All I do is sleep! I am so angry!

I ask him about the tests we did to figure out why I am so fatigued and short of breath. He checks my results for the Exercise Stress Test and Sleep Apnea test aren't in. I have an appointment next Tuesday to follow up for that. He told me if the Exercise Stress Test comes back normal, he will send me for a breathing test to see if I have asthma.

The reason I am angry is it feels like he is just giving up. I realize there is only so much he can do, and he is trying his best. But at the same time, it does not feel reasonable to say to me "just rest". The symptoms are affecting my quality of life. I keep freaking out that I have MS. Whenever I research my symptoms MS comes up. My hand's keep seizing/tightening up, same with my left leg. I have dizzy spells, heat makes my symptoms worse. I was in a hot tub with my friend and the numbness started spreading and my entire body went extremely weak. I have never had an issue with hot tubs before. Same thing happens if I have a bath. I find it difficult to concentrate and my memory has been crappy. Quite a few times when I go to speak I have difficult saying my words - comes out all garbled. I know symptoms can be similar for several diseases. I am just so desperate to figure out what this is. Not knowing has been worse than dealing with having hiv. Hopefully I will figure this out soon. Thanks for listening to me rant.

Group Therapy Post #3 - One Step at a Time

It's Valentines Day. Fucking happy people in their fucking happy relationships. I choose to believe they are pretending to be happy. I see a couple walking, holding hands, smiling at each other, I want to vomit. Secretly, I choose to believe they hate each other and get into fist fights every night, no one can truly be that happy. I find it easier to judge others and be angry at others than deal with my own issues.

The walls are supposed to be white, they look like they haven't been cleaned in years. The chair I am sitting in is extremely uncomfortable. A butt plug with spikes on it would be more comfortable in my ass than this chair I am sitting in. Maybe these chairs are part of the process, if they make you angry enough and you go postal they commit you. I am sitting in the waiting room of the Psychiatry clinic at the hospital. I am here for the assessment. Am I Bipolar? What if I am? It would explain my crazy mood swings, but I don't go days on end with no sleep. I love sleep! Sometimes I sleep for 16 hours. If I am sleeping I don't have to think about my horrible life. If I am sleeping I don't feel the pain, the sadness. If I am sleeping I don't have to think about the dark gloomy cloud hanging over me. If I am sleeping, I can hide. It's 8:15 am, the assessment doesn't start until 8:30 am. There are a few other people in the waiting room with me. One person in particular stands out. I look over and in the corner sits a man, looks like he is in his late twenties maybe early thirties. He looks exhausted, like he hasn't slept in days. He has dark brown hair and his face is stubbly. He looks miserable, I feel sad for him. 8:30 am finally rolls around and the receptionist pulls back the beige partition that closes the receptionist desk. Looking at the beige partition it just confirms that they haven't done any renovations since 1985. The receptionist says anyone here for the assessment, please come here and sign in. I leap out of my seat and rush to the receptionist desk. I want my name to be first on the list, I want to be out of here as soon as possible. She hands me a clipboard with papers to fill out. When I first called the clinic they told me the assessment would take between 2-3 hours. Looking at how many pages I fill out, I might be here all week. My anxiety is through the roof. I sit back down and nervously wait for my name to be called. I start filling out the paper work.  My brain is running a mile a minute. Why am I here I think to myself? Is that what they are going to ask me? I am here because I am severely depressed all the time, I am stressed out, I have anxiety, I can be super happy and hyper then go back into a deep depression. But why? Why am I like this? I don't fucking know. I guess if I knew I wouldn't be here. Jesus I'm crazy. I really wish I had a giant iced cappuccino right now. When my anxiety is running through me I like to eat and drink unhealthy. I sit in this torture chair and think to myself, I can run away. I don't have to do this. What are they going to do? Probably just increase my anti-depressants. Tell me it's all in my head. 

Jared, please come with me I hear. Fuck it's now or never. I stand up and look at the person who called my name. It's a man, he looks nice, hair a little weird, probably in his 40's. Fuck it, I have nothing to lose, I follow him. He takes me to his office and tells me to have a seat. His office is depressing. It's small, it also looks like it is from 1985 and the lighting is brutal. He says his name is Bob and he is one of the therapists at the clinic. He starts off by asking what brings me here. I reply with I keep going through bad bouts of depression. As the years go on the bouts get worse and last longer. I went to my family doctor and told him I can go from being super depressed to really hyper, happy with a positive outlook on life and that it is mentally exhausting. I said my family doctor felt like that sounded like Bipolar but he isn't an expert in that and advised I should see a psychiatrist. Bob replied with do you go days on end without any sleep? I said no I don't, but all my life I have always slept more that normal. I tell him when I was a baby my Dad told me I slept so much that he would panic and wake me up to feed me. Your not Bipolar if you don't go days on end without sleep, he says. He proceeds to ask me many questions. I am pissed off that he dismissed the Bipolar disorder so quickly. If I'm not Bipolar then what am I? There has to be a reason, why I am like this? 

He asks me what my childhood was like. I tell him I was bullied a lot in school. He asks why I was bullied? I replied with I was a dork and people liked to pick on me. Also people would say I'm weak and call me a faggot. I mention that in gym class some of the boys would take my clothes and soak them in the shower so I would have to walk around in my gym clothes all day. He asks me are you gay? I said yes I am. He asks how do you handle feeling depressed? I replied I normally would hide in my room and sleep. I will sleep anywhere from 10 to 16 hours. When I am not sleeping, I will eat fast food, drink pop, slurpees, iced capps. I will have sex, a lot of sex. He asks you can be quite promiscuous? I said yes.  He asks, I see you put on the form you have HIV? Yes I do, I was diagnosed March 1st 2010. How has that been for you? he asks. It hasn't been easy, I say. I am angry with myself for getting HIV. He asks me what I would like to get out of therapy? I struggle to find an answer. I say I just want to be happy, I want to learn coping mechanisms to deal with the depression, anxiety and stress. He says do you know why you go into bad depressions? I said I don't know, I just do. I hate life most of the time. He asks, have you heard of the saying, don't cry over spilled milk? I reply yes. He asks me what does that mean to you? Don't sweat the small things I say. He asks me have you heard of the saying the river runs deep? Yes I say. He says I think with you, the river runs deep, very deep. He mentions to me that they have a program, call the Evening Treatment Program. It is a group therapy program, it is very intensive, it runs for 18 and a half weeks. It's requires quite a bit of commitment. It looks at your childhood and how it's impacted you. Is this something you would be interested in doing? I said yes if you think it can really help me. He said well let me talk to the Psychiatrist and review your file with her and we will meet with you at 10:30 am? That’s about an hour and a half away so if you like, you can go grab breakfast, just make sure you’re in the waiting room for 10:30 am. I said okay sounds good. I walk out of the office, down the hallway and exit the psychiatric clinic. I let out a huge sigh of relief. I say to myself, good job Jared, I'm glad I did this. Even though I am glad I came here, my anxiety is still through the roof. 

I walk across the street to Tim Horton’s and get a breakfast sandwich and a giant iced capp. I sit down and take my first sip of the iced capp. The sugary, creamy, coffee flavour hits my tongue, slides down my throat. Ahhhh so good. I'm nervous about meeting with the Psychiatrist. I've never met with a Psychiatrist before; I have heard mixed reviews from people about Psychiatrists. It seems sometimes you get someone who cares and sometimes you just get a dick head. I really liked the Bob guy, he seemed like he really cared. In the assessment he asked me if I wanted to stop being promiscuous and have a committed relationship. I looked at him embarrassed and said yes, but I'm too scared. Why would someone want to be with me if I am so messed up? I sit in Tim Horton’s, drinking my iced capp, staring out the window, thinking about my meeting with Bob. What the fuck has brought me here? Seriously, what has happened that I get so depressed? Why does life have to be so fucking hard? 

It's time for me to meet with the Psychiatrist. My heart is ready to jump out of my chest. I'm sitting in the waiting room, waiting for Bob. He shows up and asks me to come with him. I walk behind him down the hallway. We go around the corner and into the office. It's a woman Psychiatrist this relives me. I prefer a woman to a man, except for Bob, there is something about him that makes me feel instantly comfortable with him. The Psychiatrist introduces herself and asks me to take a seat. I go to sit down and I fall into the chair, holy crap this chair is low I say. She starts asking me some of the same questions Bob asked me. Why am I here? What has been going on? What happens when I feel depressed? She asks me about the stress at work and why I am on Short Term Disability leave. She tells me that the 50 mg a day of Zoloft I am on is a really low dose, that we should increase it to 100 mg a day. I am fine with that I say. She tells me to take 75 mg a day for two weeks and then 100 mg a day going forward. She asks me how I found out about the Psychiatric/Therapy clinic. I told her I had an appointment with my family doctor, and how he thought maybe I was Bipolar and he mentioned there was walk in clinics at the U of A and Royal Alex. So I researched it online, came across the U of A one, called and then came in. She asks me questions to figure out if I am Bipolar. She says the same thing as Bob, I don't go days on end with no sleep so it doesn't sound like Bipolar. She agrees with Bob's recommendation, that the Evening Treatment Program would be beneficial for me, to figure out the core issues related to my depression and to work through the feelings. She says she will forward my information to the Evening Treatment Team and they will contact me to setup an appointment to meet with them. I leave the clinic with my prescription of Zoloft and a follow up appointment with Bob next week. I am scared but also looking forward to getting past this depression. I go home exhausted and sleep for several hours.

My Disease is worse than yours

Yesterday I was reading various tweets on Twitter and clicked on a link to an article about HIV. It talked about how HIV isn't a death sentence anymore. It also talked about how HIV is compared to having diabetes - both are considered manageable diseases. In the comments section of the article, people were arguing about how their disease is worse than HIV. Specifically there were people arguing about whether having HIV or Diabetes was worse.

When I was first diagnosed with HIV a few thoughts ran through my head. How bad is this? Am I going to die right away? If I go on medications will I have horrible side effects? Will my friends and family still love me? And so on. The next week I met with my HIV doctor, an infectious disease specialist. The first thing he said to me is, HIV isn't a death sentence, it's like having diabetes. Both are manageable chronic illnesses. Both require daily medications to control the disease. Both can result in death or other illnesses if not managed properly. Type 1 Diabetics have to inject insulin everyday. I get to swallow pills. Both HIV and Type 1 Diabetes have no cure.

According to the Mayo Clinic website, the theory behind Type 1 Diabetes is the immune system destroys insulin producing islet cells. Complications of Type 1 Diabetes include:

• Heart and blood vessel disease
• Neuropathy
• Kidney damage
• Eye Damage
• Foot Damage
• Skin and mouth conditions
• Osteoporosis

According to the Mayo Clinic website, HIV destroys CD4 cells which play a roll in protecting the immune system. When CD4 cells are destroyed, the immune system becomes compromised. Complications include:

• Tuberculosis
• Cytomegalovirus (can cause damage to eyes, digestive tract and more)
• Neuropathy
• Kidney Disease
• Cryptococcal Meningitis
• Kaposi's Sarcoma

You're probably wondering why I am comparing the diseases. The reason I am comparing them, is I want to know, is one disease truly worse than the other? I don't believe so. Both diseases are horrible diseases to have. Both diseases affect quality of life. Both diseases can lead to serious complications and/or death. Looking at the complications, they are quite similar and serious in nature. Both can result in neuropathy, kidney damage and damage to the eyes. Is it fair to say my disease is worse than yours? I don't believe so. Is it fair to say some diseases are more serious than others? Absolutely. At the end of the day, how bad a disease is for someone is for that person to decide. 

I was shocked to see how many people in the comment sections of that article were trying to say "their disease was worse than someone else's, or worse than HIV. I think as human beings, not all, but a lot like to have a pity party. It helps us deal with what is affecting us. I don't agree with saying my disease is worse than yours. I don't know how your disease affects you, I am not you. I only know how my disease affects me. If it's horrible to me, then it's horrible. If your disease is horrible for you, then it's horrible. It's all relative to that person, to their circumstances, their life. 

Instead of judging each other and trying to compete with each other, using are diseases as a game, let's show compassion for each other. Let's try to understand each other and be there for each other.

Medications

I just took my HIV medications, as I normally do every night, around this time. After I downed the third pill, I sat there, staring at the prescription bottles. I realized how fortunate I am. Yes I have a horrible disease. Yes the disease isn't a "death sentence" anymore, BUT it's still a very serious disease that kills too many people. At the same time how lucky am I, I only have to take three pills a day to control the disease. In my province where I live, they pay for my medications. I don't pay a cent - in the beginning I had a lot of guilt over this. But as I went through group therapy and explored my issues, my mental health and childhood, I realized getting HIV wasn't black or white. It was a lot more complicated than just saying "I did it to myself." As I ramble on, my point is, I hate having this horrible disease but at the same time I an consider myself fortunate.

Health Update - Fake stroke and falling asleep while pooping

I had my latest appointment with my HIV specialist a couple of weeks ago. CD4 cells were 640 and my viral load is still undetectable. YAY! I was on Atripla for over a year, but I couldn't handle the side effects anymore. I kept having such vivid, intense dreams every night it felt like I wasn't sleeping at all. In August I told my doctor and we switched my meds to Truvada, Reyataz and Norvir. I haven't been having crazy dreams and my sleeping has been much much better. Going through group therapy made me realize, I need to learn to speak up. Just because I have HIV doesn't mean I don't deserve to have a good quality of life. I've spent a lot of time feeling guilty for contracting HIV and group therapy has helped me learn how to forgive myself.

In other health matters, things have not been going so well. Starting in September I started having fatigue. I assumed that it was from being in group therapy four hours a day and once I was done I would start feeling better. I finished group therapy at the end of September and the fatigue has been getting worse and worse. I am extremely exhausted every single day. Thankfully I am still on medical leave from being in the group therapy, so I am only working 4 hours a day. I work from 8 am to 12 pm and it feels like I worked a sixteen hour shift. I go home and nap for 4-5 hours and then I have no problem sleeping my regular 7-8 hours a night.

Everything I do makes me tired and short of breath. Walking to the basement to do laundry, makes me tired and short of breath. It's ridiculous. A couple of weeks ago I shovelled the side walks and thought I was going to die I was so tired and out of breath. I went in the house (I can't believe I am going to share this) and had to go to the washroom. I was sitting on the toilet and...... I fell asleep! Yup that is correct, I fell asleep while pooping. WTF?! Who falls asleep while pooping? Not normal. I told my doctor about all this and his response was that it was probably my depression that was making me so tired. He suggested I go back on an anti-depressant. I told him I wasn't feeling depressed, I told him that I don't feel sad and I'm not withdrawing from friends and family. He said to just give the anti-depressant a try. I filled the prescription for the Celexa and after a few weeks, I let him know my mood was really great on the Celexa but I was still feeling exhausted and sleeping a lot. (My friends said I seemed so cute, happy and jolly - tee hee) I had also been to the hospital in that time because I was having troubles breathing and having chest pains.

The hospital ran a lot of blood tests, checked my thyroid, checked for infections, all came back normal. They took a stool sample (the highlight of that was when the nurse yelled down the hall to me - while I was waiting to get my chest x-ray) - she yelled "Jared is this your stool sample in here?" Yup, thanks for letting everyone know, I crapped into a container. All the tests and chest x-ray came back normal, they sent me home. Most recently my doctor sent me for a sleep apnea test and stress test. I have an appointment with him on Tuesday to review the results.

Then I have been having weird, creepy stroke symptoms. A few weeks ago I woke up and I had this weird numbness on the left side of my face and my left arm felt a little weak. I went to work and joked with my co-worker that I was probably having a stroke. After work I went to Arby's, I'm sitting there eating my sandwich and my hands won't work. I am trying to pick up the sandwich, I know how to pick up a sandwich, but my hands just won't do what I want them to do. I am freaking out, trying not to cry. After a couple of minutes I finally manage to get the sandwich into my hands,  but my mouth won't work. I am trying to bite and chew but my brain says nope, not today! The food just falls out of my mouth. After a couple of minutes my hands and mouth start working again but now I feel dizzy and really out of it. I keep thinking to myself, I need to get home, need to get home. I get up and drive home. Thankfully I made it home safely. I walk in the door and my roommate (my friend of eleven years), can instantly tell somethings wrong. She looks at me and says "what's wrong." I'm trying to respond but I can't find the words, all I can get out is "my brain won't work." "Umm what happened" she responds. I try to tell her about the Arby's incident, later she tells me I was talking really slow and slurring some of my words. I tell her about my hand's and mouth not working, she says "umm I think your having a stroke, I am taking you to the hospital."

Off to the hospital we go. I had to wait an hour to get in, which is extremely fast compared to the time I had appendicitis and had to wait seven hours to be seen. The triage nurse is asking me questions, it's taking me forever to respond. She asks me to spell my name and I just stare at her blankly. I get brought in and they do some neurological tests. My left arm, hand and left leg are considerably weaker than my right side, which worries them. They shine light in my eyes and I want to punch them in the face it hurts so much. The week before when I was in the hospital, they put the light in my eyes and I didn't even flinch. They give me two chewable advils and tell me they are going to send me for a CT scan. I see the head doctor in the distance, my he is good looking. I am wheeled to the CT scan and the CT technologist is also quite good looking. I think to myself, is this Grey's Anatomy? They complete the CT scan of my head and send me back. The guy taking me back is very cute. Do they schedule all the good looking people to work at the same time? Or is my stroke making everyone seem good looking? Who knows. My friend and I wait and wait and finally the neurologist comes.

CT scan came back normal, which is good but a CT scan won't always show if there is a stroke. They want to do an MRI but can't do one till morning, so I was admitted and had to stay overnight for observation. The next morning I have my MRI. Oh my lord, the MRI machine is loud. It sounds like someone is doing construction right next to your head. Is this machine from 1935? After thirty minutes the MRI is finally down. Back up to my room I go. The head neurologist comes up and says my MRI has come back normal. Definitely not a stroke. She says they think my symptoms are being caused by a migraine with aura. I respond with "but I don't have a headache." She tells me that can happen sometimes. I look at her skeptically. She asks me how the numbness is and I tell her it's still there but not as bad as the day before. She said that's good, that they are going to send me home. She tells me if it doesn't go away in a couple of days or get's worse to come back to the ER.

Well two days later it's worse. My hand keeps seizing/locking up, the numbess is in the left side of my neck, my ears, and the back of my head. I am nauseated off an on. I go back to the ER, wait three hours to be seen. The doctor says they are going to give me some migraine medications via IV and an anti-nauseant via the IV. I get my IV, I get my meds and the numbess starts going away. Yay, maybe it is just a creepy migraine with aura with no headache I am having. The doctor writes me a prescription and I leave. WELL! I am driving home and the numbess comes back with a vengance. It goes from my left temple, my left ear and to the bottom of my jaw. I am angry and refuse to go back to the hospital. I go home and go to bed. The next day, I decide to fill the prescription, maybe it just needs a few days to work. NOPE! Medication was definitely making it worse. I stopped the medication and went to my family doctor. I told him what happened and he looked at me with a WTF look. He prescribes me a different migraine medication - Flunarizine. I fill that medication and start taking it. I have been on it for two weeks now and no improvement. On the plus side it hasn't made things worse. If this truly is a migraine with aura with no headache, is it then the longest migraine ever? This past Friday my symptoms were really bad. Numbness on the side of my face, my left hand kept seizing/locking up, especially when I had to do things at work like remove a paper clip. It's been extremely frustrating and scary. Whenever I google/research my symptoms, MS always comes up. Whatever it is, I hope we figure it out soon and hope it's treatable.