I Left The Window Open

I've reached that point in my life where I am completely at peace and more than comfortable being on my own. It took many interesting experiences to get here. The dating scene is truly something else. I wish I was around back in my parents day. Back where there was mutual respect and love. Like real, true love. Not the temporary bullshit people throw around to get themselves through the night, the weekend, the season. The lies they tell themselves, they tell each other, to stay in these false relationships. 

How can one be expected to give it their all when they are told by the other person they can't say where they see the relationship going. How can you say you're upset when parting ways if you're actively meeting other women online 9 months into the "relationship"? I use quotes because that's the other thing, no one wants to ever put a label on it. I cannot understand how this is acceptable. This has become normal, everyone is keeping one person on hold just waiting for the next best thing to come along. You all are missing out on some incredible people by doing this. You're also damaging them, that's the worst part. 

I absolutely refuse to be guilt tripped for failing to keep someone else happy. Just as I, and only I, am responsible for my own happiness you are responsible for yours. I too have demons that I face and slay daily. I do not need to be nor expect to be rescued and neither should any of you. 

I tried. I tried really hard to do it. It's just not in me. I cannot and I will not settle nor sacrifice my happiness, my wellbeing for a false sense of security. I don't see a need for it. I have amazing people in my life already. 

I don't want to be a second, third or fourth choice. I don't want to be a consolation prize. Especially when I do not feel what I'm supposed to feel, and yes I'm going to be cheesy here because I have felt that before. I know it exists. I will hold out for that or continue my journey alone. 

One trait I inherited from my mother was her incredible strength. I thank God for that daily. I have my moments where I break but I know when I need to pull away from a situation and fix myself. 

It's been a long cold lonely winter but I can see the sun shining bright again. 

This is how a heart breaks...

Visiting her in the hospital was not a new thing for us, unfortunately. However when the doctor spoke to me in the doorway to her room and told me she probably wouldn't be coming home after this visit I didn't know how to process it. My mother would be sent to hospice. My mother was dying and there wasn't a thing I could do to save her. I didn't think it was true. I thought he must be wrong, he has been wrong before about the minor things after all. But he wasn't. My mother was not coming home. 

She was talking still but not much at this point. I remember talking to her about my nephews birthday January 5th and my birthday January 20th. We knew she was not going to make it much longer, she didn't have to say what I knew she was thinking. I told her it was ok, we would celebrate both birthdays together. It was decided we would the Friday after RJs birthday, January 6th.

At this point I was in and out of work, life was a blur. I just wanted to spend time with my mom while I could. I went to work on January 6th. I was only planning to stay a few hours, we had a couple of birthdays to celebrate, ya know. I received a voicemail from one of my cousins and it sounded important, I called him back right away. He asked me what happened that something happened, his mother one of my lovely aunts, was in hysterics and all he could make out from her was that it wasn't Peggy, my mom. I had no clue what he was talking about. 

One thing I should mention is that I come from a very large, close-knit family. I hang up with Allan and call my Aunt Loretta. She tells me that she can't tell me what is going on over the phone but I insisted. While I sat in a cubicle, surrounded by coworkers in all directions. With the next words my fragile heart broke in two. It's Leman, he took his own life. Leman was 19, my baby cousin. The boy who I used to threaten when I babysat him that if he didn't behave I'd have to call his Uncle Steven... the only person he was afraid of. What I wouldn't give for another day with that fresh little boy. The boy who used to melt your heart when he told you he loved you, unable to pronounce his L's properly, "I yove you". The boy who as a young teenager we went to the movies and by the time we got back it was as if he was the adult watching me that night I was so scared from the movie. The boy who as a teenager, no matter who was around would ALWAYS come up and give you a hug if you were family - he wasn't embarrassed by you like most teens get. The boy who had no fear as he would come home after a fall while BMX-ing. The boy who was just turning into a man. 

I had to be picked up from work that day because I couldn't drive myself. Thankful for yet another cousin, Roy, who drove out to get me and also came with me to tell my sister. Family is where we needed to be. 

It was decided that we couldn't tell my Mom. She wasn't in a good place, obviously. And at this point she stopped talking. We did however, have two birthdays to celebrate, ya know. So we parted from the rest of our grieving family and headed to the hospital. How could one pretend that everything was ok when the little boy with such a big personality whom they've watch grow up was suddenly gone? How could one pretend that everything was ok when they knew their mom (grandmother/sister/aunt) was not going to make it much longer? The answer is you do, you don't know how but you do. 

We went to the store and gathered party hats and balloons. Several of us went into that hospital room and pretended life was the same as it was the night before. Rj & I celebrated our last birthdays with her and it was fucking awful. I still have that Spongebob party hat, though. 

At some point right after she was moved to hospice, where I slept every night on a cot by her side. On Saturday January 14th, in the early morning hours I awoke to a sweet, soft voice. Angelic almost. "Shes gone. She passed during the night". With those few words, eight days after my heart broke in two, it shattered into a million pieces. 

That was five years ago. FIVE. How does it feel like it's been so long yet just yesterday. Time is funny like that. Five years later and the realization that I won't see them again is just sinking in. I don't think it ever gets better, as they say... it just gets... different. You certainly adjust to life without them but it never "gets better". 

If you or someone you know is contemplating suicide please consider reaching out to one of these incredible organizations. There are people who want to help:

1-800-273-8255

Afsp.org 

Nami.org

Twloha.com

Projectsemicolon.org

For information on bile duct cancer please visit: 

Cholangiocarcinoma.org

In loving memory of 

Leman Bradshaw

08/25/92-01/06/12

BMX video: 

https://m.youtube.com/watch?v=PEdnTHDR4Zg

Peggy Oberempt

07/12/44-01/14/12

You look great! 🤔

Hello, it's been a while. I know this blog started out as a show and tell about my journeys to various destinations in this lil' corner of our beautiful (albeit insanely scary at the moment as we get close to this despicable election) country. However something prevented me from getting to those destinations. Something is preventing me from living my life in some of the ways I want to. And I'm going to talk about it until I can get to those destinations, and probably after that too. I'm sure you all are sick (ha!) of me talking about it but it is in fact my EVERYDAY life at this point. I don't bring it up for sympathy, so please do not show any. I bring it up so that I can raise awareness. I bring it up so that I can help, even just one person, know they are not alone. I bring it up to help me process the information and grieve the life I used to live. I talk about it so that you can understand me better or at the very least try, because quite frankly I feel like most of you don't and that's ok because how could you if you aren't going through it yourself? 

For those just joining, "it" is my chronic (read; I won't "feel better soon" but thanks for the sentiment) illness which I have had for almost two years now and will continue to have for the rest of my life. I have an autoimmune disease that up until two weeks ago didn't have a name. Autoimmune diseases are when your body produces too many antibodies (the things that help fight off germs and cooties) and the body starts mistaking itself for an intruder causing it to attack parts of itself. Depending on which of the 80 or so autoimmune diseases you have depends on which of the body parts are under attack. The diagnostic process is tricky and only one lab comes back that I have a lot of antibodies typically found in rheumatoid disease but unfortunately it doesn't determine which one I have. Every single other lab comes back normal and it does so every single time. I had considered the individual rheumatic autoimmunes which my symptoms fit. I bounced between Lupus (the one I truly thought I had), Rheumatoid Arthritis, Polymyositis and possibly Scleroderma. I thought I may have had Hashimotots, autoimmune of the thyroid, which my sister has but my labs run by my Endocrinologist came back all normal and she didn't seem overly impressed with my running list of symptoms. I even considered Multiple Sclerosis, autoimmune of the protective nerve coverings, as I had symptoms that fell in line but my Neurologist cleared me rather quickly and only treats me for my neurological symptoms. What I never considered, probably because there isn't much information on it out there was Mixed Connective Tissue Disease (MCTD), a rare autoimmune that presents as overlapping symptoms of multiple connective tissue diseases mainly Lupus, Scleroderma, Polymyositis and for some RA, interestingly enough the rheumatoid diseases I bounced between. Like most, if not all autoimmune diseases, there is no cure. Apparently MCTD is not well understood by the medical field, this should prove interesting. When I received my diagnosis of MCTD this month from my Rheumatologist I was not expecting to get a diagnosis at all, never mind this one.

I thought once I'd have a name for "it" I'd be able to move forward. I was wrong. I came home that night prepared to do hours and hours of research online. I had done this for autoimmune in general and each of the above specific diseases which the Internet contains a wealth of knowledge on from articles to forums, forums being my favorite because you're getting a personal experience rather than some medical study. My research lasted all of maybe an hour. I came up with very little more than my description of MCTD above and that "Despite treatment, mixed connective tissueDisease worsens in about 13% of the people, causing potentially fatal complications in 6 to 12 years. The prognosis is worse for people who have mainly features of systemic sclerosis or polymyositis. Overall, 80% of people survive at least 10 years after the diagnosis is made." (Merckmanuals.com). Wait, what!? Nowhere does it mention anything about life with MCTD past this point. Some of my favorite sites (since starting this medical journey) don't even go into prognosis, good or bad! Which to me isn't a great sign. When you look up the other AI diseases it goes on to say most individuals can live normal, long productive lives with proper treatment for many of them. Imagine being newly diagnosed and discovering this, when you already some days ask yourself "Is this what it feels like to die?". It's (excuse my language here) fucking terrifying! I found no online forums specifically for MCTD but I did find one discussion on a Lupus forum where people were referring to MCTD and the info online regarding prognosis. Many of the posters were stating they have lived beyond the 10 & 12 year marks, that it depends which disease presents itself more over time but that it could switch over the years, you could present with one more so than the others then later on present with another more so than that one. Somewhat of a relief but I still don't know much about my illness. 

What I do know is that I feel like garbage on a daily basis yet I smile and look normal in appearance and most people don't even realize it. I think people know my bad days are bad but believe my "good" days are equivalent to theirs. They are nowhere near yours and I hope you never have to test that for yourself.  My baseline is everyone else's sick day. I feel generally unwell, feverish I guess one would say, yet I have no fever. My skin burns. My joints ache anywhere from dull to excruciating each day. One day it's my knees, another my hands, or maybe my elbow, ankle or hips. Some days it's all of the above. Different things trigger my symptoms; some foods, stress, weather, hormones - yup I feel my worst, my symptoms flare, just because I am a woman. Fantastic! I break out with rashes. Dizzy spells, nausea, migraines, tremors (both internal and external), muscle spasms, tripping because my foot won't lift properly. Ulcers in my mouth and nose. Tingling in my hands, feet, face and tongue. Brain fog. Electric shocks up my feet through my legs (luckily only twice during that one weekend my body went absolutely crazy and I ended up in Yale overnight in March). Chest pain which could be inflammation of the rib joints or the lining of the heart or lungs, I have heard both but never got a real answer on that - I've learned to just chalk most things up to being "normal" for my body these days. I have a constant pain just under my left shoulder blade that feels as if someone has punched me in the back leaving a severe bruise. My hands and feet turn patriotic colors with excruciating pain. This is a secondary disease called Raynauds Disease which goes hand in hand with many autoimmune diseases, its when the blood vessels open and close faster than normal in reaction to temperature change and stress. This can happen literally just grabbing something out of the freezer. Oh and apparently I've developed a sun allergy. My least favorite symptom is the ever growing fatigue. It doesn't matter how much sleep I get or don't get, Im beyond exhausted simply upon waking. The fatigue is there every day, the pain is there to some degree. The rest of the symptoms come and go as they please by the minute. I never know how I'm going to feel.

My every day consists of me struggling to get going to pushing myself through a work day and if I'm lucky i have an appetite and the energy to make dinner when I get home and that's my "good" day. My weekends, on a "good" day, consist of me sleeping until the middle of the afternoon then possibly getting something done around the house (or make it to a family/friend obligation if I can but I can really only handle one small event a weekend at this point which is pushing it) and resting to make it through the next week. A bad day is a good day amplified which results in me not being able to leave my bed period, zero appetite and if I try to force myself to eat I feel as if I will puke after a few bites. My hips feel as if they are in a vice slowly closing crushing my bones straight across to the point they crush down into a v from the pressure. When I'm not leaving the house people know it's a "bad" day. I just ask people to realize my "good" day is absolutely nothing like your impression of a good day. 

My day to day life is with diet and lifestyle changes, mind you. Including natural remedies and yoga, which everyone swears is great for my autoimmune diseases (although I've missed the past 3 weeks because I've felt that crappy... I LOVE yoga so that's saying a lot). Im on one long term medication and one short term secondary medication for my illness as well as medications for a host of other problems that come along with autoimmune including blood pressure and cholesterol issues. One medication suppresses my immune system, now not only do I have my everyday illness I have to worry about the other illnesses I am now susceptible to. (So please just take the sick day and stop spreading your germs!). I'm tapering off of the short term medication to prepare for possibly adding a long term secondary medication which happens to be a low dose chemotherapy, also terrifying but if it helps I'm that desperate and willing to try it. It's been trial and error with medications and testings. I've lost count of blood draws and vials. I've peed in cups and even collected my urine for 24 hours in a jug recently. I've had ct scans, ekgs, an echocardiogram and ran on a freaking treadmill. 

Due to my suppressed immune system I can now say, hello shingles! Such a lovely surprise. My already worn out body is completely knocked down. I'm holding on by a thread and I still push myself to do the essentials of living with a smile. And the people around me think I'm fine because I "look good". I'm in a hole clawing at loose dirt trying to get out and some of the people closest to me have no idea, whether they are clueless by choice or not I have no idea. (I started this post the other day. Upon publishing I have one hand ready to pull me out of the hole finally after 2-3 weeks of a bad flare combined with the shingles) 

Now if you paid attention above I mentioned three specialists that I'm seeing, at $45 a pop. In addition to my regular doctor. My last round of appointments were three in one week, you accept what they give you since they book quickly, plus I had an unexpected visit. Take into account my ever growing medication list. My amounting sick days, luckily the state of Connecticut has the Family Medical Leave Act or I'd probably be out of a job by now. But most of these days I'm also not getting paid for. Take also into account that I had to give up my dream, which also served as a second income. Let's just say I'm on a much tighter budget these days with no room for fun, not that I have the energy for it anyway. 

This is my life now. Will it get better? I hope so. However I worry daily that my health will continue to decline. I worry that I will lose my job because I can no longer function as well and will not be able to provide for myself which as a single person is pretty scary. I worry about losing my insurance which allows me to get some relief from my disease, because that one month off my meds as an experiment by my rheumatologist a few months ago was extremely dreadful and I'm sure there were still meds in my system. I worry that I will not be able to pay my bills as it is and I've contemplated which of my possessions I could sell, which considering I'm not a materialistic person isn't much. (Anyone want to buy a Wii?) Did I also mention that autoimmune diseases can attack the organs, not specific to their disease? For example Lupus is known to attack the kidneys for many people despite it being an autoimmune of the tissue. So yea I worry about my organs, pretty sure most of y'all don't have that worry on a regular basis. 

This all means that I'm not only suffering physically, I'm suffering mentally and financially. So when I say I can't make it or I'm not sure if I will be able to for an invite, there are several reasons why. I have to factor in: How will I feel that day? Do I have anything major around that time I need to reserve energy for? Will I have extra money to do that? How much stress is involved? How long will I have to sit/stand for? What are my food options, because I will most likely pat for it later? ... And so on. Making plans is not a simple yes or no decision for someone with an autoimmune disease. Please don't stop asking however don't put added pressure on me when I'm hesitant. 

So have I changed? Absolutely! My main focus right now is myself, everything else takes a back burner. My physical and mental wellbeing come first because honestly despite "looking good" I'm far from good in some aspects. I truly am just trying to survive at this point. I am in pain, I am exhausted, I am scared. Most of all though, I am blessed. Getting sick has taught me to put myself first, to take care of myself, to choose a more peaceful lifestyle and I couldn't be happier with that part of my life. I also know it could be much worse in all aspects. 

Oh, and for the love of God, just like I wear my smile, I post my "smile" on social media. Here, enjoy some crappy photos of me feeling unwell if that'll make ya happy...

Washed out during my most recent flare:

My lovely rash (one of two I get on my face):

Hives from sun exposure:

My malar type rash worsened from sun exposure:

A blood draw gone wrong:

My face on fire:

Paging Dr House

Earlier in the year I decided I was going to LIVE! I set up a plan to enjoy this beautiful corner of the world we live in. Little did I know that life had other plans for me. Ironically enough the year I decided to live was the year my body decided it was going to wage a war... Against itself. 

Last year from summer into fall I noticed I'd come home from a one hour photo session and nap, this was unusual for me. I normally come home, load the photos, cull my session and send out sneak peeks. I thought maybe I was over doing it. Then after it kept happening and my ability to concentrate started to decrease I thought that I was possibly falling into a bought of depression. I always have a hard time when fall and winter come, it made sense. Fast forward to the beginning of February this year. My thighs were bothering me, the muscles felt weak and tired. I was familiar with the feeling, I'd have it every month. Except this time when my cycle ended the discomfort stayed. The last week of February I made an airport run in an awful snow storm, I gripped the steering wheel tight for the long, grueling drive. By the next day my wrists were hurting, I was certain it was from the trip the night before. 

My next cycle turned into five days in bed and a very unhappy body for months to come and still continuing. Day 3 I had an appointment with my Gyno so I brought it up then. I knew they were who helped steer my sister towards the endocrinologist that gave her a diagnosis of Hashimoto's, an autoimmune disease where the body believes the thyroid is an invader and attacks itself specifically the thyroid. As much as I wouldn't wish this on anyone I was lucky to know where to start since I was somewhat aware of what my sister has been dealing with (little did I know that I actually had no idea just how bad it was until I started feeling the same way. They say no one gets it until they get it. Ain't that the truth). The only thing they could test me for was basic thyroid levels not the full thyroid panel needed to test for Hashimoto's. I left that appointment and went straight to my GP. He ran a ton of blood work testing me for Hashimoto's and a bunch of other things. 

The only way I can describe it is like having the flu but worse. Joint pain in my hands/knees/hips/elbows/feet. I'd have difficulty doing regular tasks because I had cramping in my hands and I was dropping things. I had muscle pain/weakness in my legs and arms, occasionally my legs would give out on me. My body felt too heavy to carry around. I was beyond tired all the time by this point, fatigued. I'd go to bed knowing I was going to wake up even more exhausted than I already was. I'd need to rest after taking a shower. I had trouble walking across the parking lot at work. Nevermind going up to my third floor apartment! I was getting headaches more often. It hurt to walk on my feet after being off them for a period of time. I was having gi issues. My arms and hands would wake me up frequently in the middle of the night because they would tingle and they hurt. My skin felt like it was burning from the inside out. Yet my feet and hands were freezing cold. I occasionally feel like I'm on drugs feeling dizzy/off balance and disoriented. I developed a rash on my face that comes and goes, I can tell you when I have it because I feel generally unwell - feverish yet I had no fever and my face has that same burning sensation. 

The scariest was the cognitive symptoms. Imagine going out to your car because you have to drop something off to someone, you've been to their house about a dozen times in the past year, you know the name of the road their street is off of, and you know that road well but you can't remember how to get there... In the town you've lived in most of your life. I had to sit in my driveway for a good fifteen minutes trying to remember which way I had to go to get to that road. I eventually figured it out but I'm not going to lie it freaked me out. It also comes in the form of forgetting or using the wrong words mid conversation. Spacing out and the lack of concentration fall under this category too. 

Five days had passed since I had the blood work done. I called my doctors office. He called me back and tells me my white blood count was a little high and my vitamin d was a little low. I asked if that was it. He says "oh. You tested positive for lupus." ... It was like running full speed into a brick wall. I honestly expected him to tell me I had Hashimoto's. (Both are autoimmune and both can effect your organ so not sure why it freaked me out so much) Lupus is where the body thinks your tissue is an invader and attacks the tissue. My doctor instructed me to start taking vitamin d and he referred me to a rheumatologist. That night I had tremors, it wasn't visible but I was having my own personal earthquake inside of my body. I was nauseous. When it stopped about twenty minutes later, I had an awful headache. I thought it was a panic attack, but now I'm not sure. 

By the time I saw the rheumatologist in late March the symptoms were nowhere near how they were the three weeks prior. Now don't get me wrong I have yet to feel great since. My "good" is still tired and in pain but I can function. I went in armed with pictures of my rash (a huge indicator of lupus is a butterfly shape rash across the nose and cheeks). I also had a notebook full of symptoms, personal and family medical history and questions. My Rheumy is really nice. I instantly felt comfortable with her. She spent an hour with me. She listened to me. She asked me questions. We ended the appointment with another set of blood work to be done. She said she wanted to test me for viruses as well as lupus and rheumatoid arthritis. Despite my facial rash getting worse in front of her she wasn't convinced it was rheumatological, she was thinking hormonal. Turns out the positive lupus test was not a lupus specific test. It was the ANA that was positive with a speckled pattern. This is an indicator that something is wrong but it doesn't mean anything specifically. It could mean any autoimmune is present, it could mean cancer, it could mean liver disease or it could be a false positive. There are many diseases that present with the same symptoms but many do not show up right away in blood work. It makes the diagnosis process long and tedious. 

It was not long after my March rheumatologist appointment that I noticed my finger and toenails started turning white and blue. I left a message for my rheumatologist asking for blood work results and let them know about the discoloration. That night I was sitting on my couch watching tv and my feet turned blue. I debated going to the er, I stuck them in the tub which helped but they were blue again by morning. This was one of the questions my specialist asked during my initial visit. I decided to go see my gp again since my specialist was away. He turned out to be away as well. The woman covering for him was able to get a copy of my labs, they came back normal except another positive ANA. She told me she believed I was in the beginning stages of autoimmune. She said my feet turning blue was indicative of lupus. 

My rheumatologist reached out to me in response to my message and asked me to come back into the office on April 10th. 

April 9th I went into the ER for chest pain. After an EKG, blood work and a ct scan they determined I was feeling the same inflammation as the rest of my body in the joints of my chest, who even knew those existed!? The next day a nurse from the ER called me a few hours before I was heading to my rheumatologist appointment. She said that my ct scan showed a spot on my lung. She told me that given my age and medical history the spot was literally just under the size they would be concerned about and that I shouldn't worry but she wanted me to be aware. She suggested I follow up with my GP. I had to stop by his office to grab a copy of the most recent labs anyway so I asked to speak to him. I was scared. I still felt sick and now I have a spot on my lung. My mind starts going. A positive ANA could indicate cancer or liver issues. What if I had Cholangiocarcinoma (what my mom passed away from), cancer of the bile ducts that shows no symptoms until it's too late. What if it spread? My doctor thinks I'm insane. He agrees to give me an ultrasound to check my liver (never did get a call with results, assuming it showed nothing) and he agrees to do a repeat ct scan in a year. But before he dismissed me he states that he is not impressed with my blood work and considers my only treatment at this time to be diet and exercise. I left his office in tears. How can I be "fine" when I felt so awful. 

Armed with more pictures I head to my rheumatologist office. She was able to diagnose me with Raynauds. This means that my blood vessels react differently to cold and stress than most people. Instead of opening and closing slowly they do so quickly. This causes the extremities to noticeably change colors; sometimes red, white or blue. As they get warm again it causes pain. When Raynauds developed in your thirties it's a secondary condition to a number of diseases, coincidently all the ones that present the same so I still do not have any firm leads for what I have. She looks over the ct scan results when I mention the day prior in the ER. She tells me she also is not concerned about the spot on my lung, she said it is most likely scar tissue from a bad cough or something. 

My next appointment with her we go over my symptoms. The newest being light sensitivity in my eyes as well as welts due to sun exposure and bug bites. By this visit Ive noticed a trend so I fill her in. The symptoms were worse the week before, during and after my cycle. I would spend anywhere from 2-4 days in bed a month with occasional single bed ridden days thrown in as well.  I'd have one somewhat decent week a month. She tells me she has ruled out a virus by this point due to me still having symptoms. She still thinks it's hormonal based on the link to my cycle. I tell her how my last appointment with my GP went. She assures me that the pain I feel is legitimate. She reminds me that the pain in my upper body could not be due to me being overweight. She also tells me that she has Rheumatoid Arthritis, she too was told her symptoms were due to her weight or stress. It took her ten years to get a diagnosis

I have another appointment and I believe this was when she prescribed me with Diclofenac, an anti inflammatory. It seemed to help but a few days in I started getting stomach pain and a constant severe headache with bloody noses (I get bloody noses all the time since I was a kid so this may be coincidence). I ended up in bed for three more days. My doctor recommended I stop taking it immediately. We had to wait for the drug to be completely out of my system before we could try the next step. At this point I feel as if I've been stranded in the Atlantic flailing my arms to stay afloat but I'm swimming in circles getting nowhere all day long, every single day. Few people knew I felt this bad.  

 At my next appointment in September she prescribed me with Plaquenil, an anti malaria also used to treat lupus and rheumatoid arthritis patients. She informs me it takes six weeks to start working. I'm willing to try it since my research came up with positive feedback. She mentions that rheumatological autoimmunes can get flare ups due to cycles so I still don't know which category I fall into. Could be both since many people with autoimmunes have overlapping diseases. 

In the weeks following I've started to get more headaches, dry eyes and eye pain. I made a call and was told to try eye drops. A few weeks later, about five weeks after starting the Plaquenil I develop a tremor. I looked like an alcoholic having dt's after a binge. I place another call and they tell me to come in immediately. I also had a few internal tremors since. My Rheumy tells me she believes it's a symptom of the disease but since I just started the medication she wanted to run more labs to check my electrolytes, liver and kidney functions. Guess what? Blood work came back normal. I can't decide if I'm happy my organs are well or upset that nothing is showing up to validate the way I feel and give me answers. 

I am 8 or 9 weeks into Plaquenil and happy to report that I do notice a slight difference. My daily pain is not quite severe, I no longer feel like I am drowning and I can actually concentrate a little longer. However I do still find myself in a flare every month. During a flare my symptoms are heightened pretty severely.  Making it impossible to function on even a low level. 

Some days I can push through, Saturday was a high pain day. Sunday was a mix of pain and fatigue. By this morning I could barely move, my head is pounding, I'm feeling nauseous and needed to lay down pretty quickly after getting up. I'm waving the white flag today, giving in to my body so that I can heal and prepare for the next battle. 

My lesson learned is not to take the good days for granted. To listen to my body, knowing when to push through and when to give in. 

My intentions for this post are not to look for pity or sympathy. I want to give hope even if just to one person. I want people to know that they are not alone! I want to raise awareness. I want my friends and family to know that some days I truly cannot keep up no matter how bad I want to. 

I like to think I handle the situation gracefully, albeit with the occasional meltdown. I still remain undiagnosed and probably will for a long time. Don't they know it's never lupus, except that one episode it actually was...

Some sites I've found helpful: 

Butyoudontlooksick.com

Mollysfund.org 

Instagram has a strong support system within the #spoonie community. 

I Wont Let Another Moment Slip Away

One of my goals for the year is to be more comfortable around myself. I recently saw one of those nice pictures with a quote on it that hit home. It said something along the lines that one cannot be lonely if they like the person they're alone with. I believe this. If you truly like, accept and forgive yourself you won't feel alone. 

One of my favorite musicians was set to perform at Stamford's Alive at Five on Thursday July 9th. I was first introduced to Michael Franti & Spearhead when they opened for, I believe it was, John Mayer many years ago. I saw them again more recently at Toads Place in New Haven with my sister and we also met up with a friend who was there. As soon as I saw he was coming back to Connecticut, for practically nothing, I asked my sister and friend if they wanted to go again. My sister was a no, friend was a yes. I also asked my cousin who was a maybe. Just days before the show my cousin said she wasn't interested in going. The afternoon of the show my friend told me he got stuck working. With the threat of rain and the realization I'd be going alone I was undecided. I really wanted to go though. 

Just an hour before the last train getting me there on time was set to depart I was sitting at my desk mulling over my options, I decided that if I didn't go I'd be taking a step backwards from reaching my goal. And I still really wanted to see the band. So I said f*ck it! Right then and there I made the decision that I was no longer going to refrain from doing what I wanted to do just because no one else wanted to do it with me. So I went solo.  I hopped on the train and made my way. 

The best decision I've made in a while! I was able to do exactly what I wanted to do at any given point in the night. I didn't have to stay where I was or move from where I was unless I wanted to. And I mean no offense to any of my friends when I make this next statement but it was nice not having to be on someone else's bathroom, smoke or beer run schedule. I wasn't on any schedule for that matter, one of the things I'm starting to become a fan of.

They opened with one of my favorites Hey, Hey, Hey. Franti's music is about living life, loving one another and peace. I let the positive music flow through my body. I danced. I sang. I drank a few beers. I thoroughly enjoyed the music, the people and the event itself. I had a blast! 

Being solo helped me obtain another goal. I talked to people I didn't know. At one point in the night I moved over to the other side of the crowd and found a group of guys with incredible energy. These guys were here to enjoy themselves. They knew the music. They danced. They laughed. It was beautiful. My opportunity to say hello came naturally. The photographer in me offered to take the group shot one of their friends was taking so that he could be in it too in return for them to snap my photo for me. We exchanged names. I even got a kiss and hug from one of the guys. I love hugs! 

At another point in the night I offered to snap a photo for a mom and her two kids. I also took part in dancing with a crowd in the street. I had a few hellos in passing, waiting for the bathroom and in line for beer. 

It was roughly 9pm when the rain my sister warned me about hit. I think the clouds kept people away but when the rain came after a few hours of dancing it was welcomed! It just added to the night for me. I personally love the rain, especially on a hot summers night! 

At the end of the show I spotted a guy in the crowd who caught my attention. I couldn't quite place my finger on it until afterwards when everyone was lined up in hopes to meet Franti. I found myself right next to the guy. I complimented him on his dreads and I immediately realized who he was. I said hey is your name (insert a J name that isn't Joshua but I've since forgotten) and he said in a surprised manner "no but my brother is" so he asked me why I asked that and I said "well does he look like you!?" He said no and I managed to say "I think I follow you on Instagram!" So while I am a firm believe that social media has ruined peoples ability to communicate I was reminded that it was intended to and can still bring people together! It was in fact Joshua that I follow and there he was standing in front of me. I was drawn to his account because of his vibe and ironically enough I was drawn to him that night for the very same reason. We chatted briefly then went our separate ways. 

I left the show feeling amazing despite being exhausted and soaked to the bone. I walked back to the train station alone. While waiting on the platform a train pulled up. It was earlier than the train I was due to take towards New Haven and they made no announcement as to which train it was so I waited outside. A minute later a younger kid walked by and asked me if this was the train, not sure I suggested we go talk to the conductor. It ended up being our train so we took a seat together and chatted the whole way home. His name was also Josh. He told me how he was an intern for NBC and how he was working the Alive at Five. It was nice having someone to talk to, especially one that could hold a conversation. As we parted ways I promised I'd stop by his tent to say hello the next show I go to. 

This adventure was me literally not waiting for the storm to pass, it was me dancing in the rain. I have zero regrets on my decision to go solo because I never once felt alone! I'm well on my way to obtaining my goals for personal growth this year and I couldn't be happier! 

Two Thumbs Up

When an awesome opportunity falls into your lap you have to just go with it. You don't ask any questions. You just accept the gift the universe hands you. 

One of the destinations on my list for the year was Philadelphia, surprisingly I had never been. My cousin Erin's best friend lives in Philly and when she asked me if I wanted to go with her for a few days I jumped on the chance. There was absolutely no thinking about it since I knew I wanted to hit up the area and I love hanging out with them. Jamie was kind enough to offer us a place to stay and an extra ticket to the NKOTB, TLC and Nelly concert. (Thanks girl!) 

I picked up Erin on Thursday evening then we grabbed Jamie's Aunt Barb (who I was meeting for the first time) and headed south. We hit the road at the perfect time. There was no traffic, the weather was good. It took us about 4 hours or so to get to Jamie's place but it went by quick since there was good conversation. Her apartment is super cute. We relaxed out on the back porch drinking a couple glasses of wine while shooting the breeze. Now picture this trip: four fun, loving, single, down to earth, low maintenance, INCREDIBLE women - basically unicorns. ;)

Friday morning we slept in, lounged around with some coffee and more chatting then Ubered into the city. We didn't have any set schedule or destination so we let Jamie take the lead. Our first stop was Reading Terminal Market, an indoor  farmers market full of good eats and vendors for shopping. We shared some yummy lunch there then headed to Love Park. 

Next up was drinks at Tir Na Nog, a really cool Irish bar & grill, that someone actually recommended to me so I was glad Jamie brought us. From there we headed to South Street. We stopped in Grace's Tavern, which I was stoked to see they had Two Roads - Road Jam on tap, not because I wanted to have it as I was drinking local but because Two Roads is an awesome brewery local to me! From there we headed down South St in search of a bar Jamie likes only to realize we had already walked past it and never saw it - love it, all part of the journey and we got to see more of the city! We turned and headed back. We stopped in at Ten Stone, the bar Jamie wanted to bring us to. They had great music playing at a volume that allows you to hear the people you're talking to, good beer on tap and more yummy food. This is where we shared steak & cheese egg rolls because who doesn't have steak and cheese while in Philly!? We also split a tuna steak wraps. Everything was delicious. The waitress offered us free samples of this ginger beer and vodka drink too, nice and refreshing! We may now have very similar cups of our own... Maybe. 

After dinner we took another Uber to the show. Now one of my goals this year is to be more comfortable in a social setting. Essentially I want to be more outgoing. So I offer to sit in the front this drive so that I can chat to our driver. Of course when he arrives he doesn't speak much English so that backfired. But he was nice. We even offered him the extra ticket Jamie had for the concert but he wasn't interested. Pretty sure he actually couldn't wait to drop us off since we made him blast TLC - No Creeps on the way as we sang along. We were late so we missed Nelly and TLC. New Kids were disappointing yet we still managed to have a great time. One thing I truly believe is that you can make a fun time out of most situations, it's all what you make of it! Good company helps too! 

(Random dude we found at the concert) 

After the show we couldn't get Uber to load properly so we hopped in a cab. We all agreed this cabbie was probably the greatest cab driver any of us had ever had. He was really cool, he even shared his gum with us. From there we headed back to South St to meet up with one of Jamie's friends from school who was out with his son and his friend for his sons birthday - good people! We hit up a few places with them and just had an all around great time. We convinced the guys to go back to Love Park so we could swim in the fountain. 

(One of my favorites from the weekend, crappy quality but I love that someone captured us laughing!) 

From there we Ubered back home. I'm in the back seat again. This driver was our favorite out of the three we had from Uber that day, she was awesome! What a great concept, Uber is my new favorite thing. I don't know why but it feels like a more personable experience than a cab ride. 

Saturday morning we slept in again. Jamie and Aunt Barb headed back to Connecticut together in Jamie's car. Erin and I headed back in my car. 

(Hahaha get it?)

But first we had a mission. My friend asked me to grab him a 12 pack of assorted beer from the area for us to sample when I got back. Apparently in PA you can't just buy beer like you can in CT. You either have to buy a case from the beer store or buy "to go" from a bar. Erin and I have no clue where to go so we drove around pretty aimlessly. We ended up Googling and found a drive thru place and decided we'd split a case. Now I've heard of this before but I automatically assumed it was a drive up window like at McDs... I had no idea you literally drive through the freaking place! That was fun! 

From there the GPS said we had 3 hours ahead of us. Neither of us has any idea what happened to the two and a half extra hours it took us to get home! We only made a couple pit stops and hit a little traffic at the GW - I'm assuming because they would randomly shut down a lane at the toll full of traffic. Everyone would cut into the lane next to it then that lane would shut down while the other reopened. What the heck!? Pure chaos but we finally got home. 

Philadelphia was gorgeous. For a big city it was clean, you were able to move through the sidewalks easily, the people were friendly. The properties are maintained in the heart of the city as well as the outskirts. The architecture was beautiful. There is so much history in the city and we barely touched any of it, I will definitely be going back. I honestly like Philadelphia more than New York!

This trip although short was just what my soul needed. A weekend FULL of laughter, great company, good conversation. There were no worries, drama or schedule to stick to. It was relaxing yet a ton fun at the same time. This was one of the best weekends I have ever had. Thank you Erin, Jamie and Aunt Barb, I love you ladies! 

The lesson I took away from this weekend is that you just need to jump into the fountain of life not worrying about what anyone around you thinks of you. If they don't like it it's their problem, not yours! It's your life to live - love the life you've been given and just be happy. 

Oh and... where's Barb?  :D