#leave myself without sick leave In case i end up with yet another diagnosis that requires immediate treatment | Explore Tumblr Posts and Blogs

doodlebuggity · 5 years

Text

Testimony of a surgeon working in Bergamo, in the heart of Italy's coronavirus outbreak.

“There are no more surgeons, urologists, orthopedists, we are only doctors who suddenly become part of a single team to face this tsunami that has overwhelmed us.”

Daniele Macchini works in Humanitas Gavazzeni Hospital, Bergamo in Italy. This is a directly translated account of his experience there. It was written on March 7th, 2020. Italy has since gone into lockdown.

“In one of the non-stop e-mails that I receive from my hospital administration on a more than daily basis, there was a paragraph on "how to be responsible on social media", with some recommendations that we all can agree on. After thinking for a long time if and what to write about what's happening here, I felt that silence was not responsible. I will therefore try to convey to lay-people, those who are more distant from our reality, what we are experiencing in Bergamo during these Covid-19 pandemic days. I understand the need not to panic, but when the message of the danger of what is happening is not out, and I still see people ignoring the recommendations and people who gather together complaining that they cannot go to the gym or play soccer tournaments, I shiver. I also understand the economic damage and I am also worried about that. After this epidemic, it will be hard to start over.

Still, beside the fact that we are also devastating our national health system from an economic point of view, I want to point out that the public health damage that is going to invest the country is more important and I find it nothing short of "chilling" that new quarantine areas requested by the Region has not yet been established for the municipalities of Alzano Lombardo and Nembro (I would like to clarify that this is purely personal opinion). I myself looked with some amazement at the reorganization of the entire hospital in the previous week, when our current enemy was still in the shadows: the wards slowly "emptied", elective activities interrupted, intensive care unit freed to create as many beds as possible. Containers arriving in front of the emergency room to create diversified routes and avoid infections. All this rapid transformation brought in the hallways of the hospital an atmosphere of surreal silence and emptiness that we did not understand, waiting for a war that had yet to begin and that many (including me) were not so sure would never come with such ferocity (I open a parenthesis: all this was done in the shadows, and without publicity, while several newspapers had the courage to say that private health care was not doing anything).

I still remember my night shift a week ago spent without any rest, waiting for a call from the microbiology department. I was waiting for the results of a swab taken from the first suspect case in our hospital, thinking about what consequences it would have for us and the hospital. If I think about it, my agitation for one possible case seems almost ridiculous and unjustified, now that I have seen what is happening. Well, the situation is now nothing short of dramatic. No other words come to mind. The war has literally exploded and battles are uninterrupted day and night. One after the other, these unfortunate people come to the emergency room. They have far from the complications of a flu.

Let's stop saying it's a bad flu. In my two years working in Bergamo, I have learned that the people here do not come to the emergency room for no reason. They did well this time too. They followed all the recommendations given: a week or ten days at home with a fever without going out to prevent contagion, but now they can't take it anymore. They don't breathe enough, they need oxygen. Drug therapies for this virus are few.

The course mainly depends on our organism. We can only support it when it can't take it anymore. It is mainly hoped that our body will eradicate the virus on its own, let's face it. Antiviral therapies are experimental on this virus and we learn its behavior day after day. Staying at home until the symptoms worsen does not change the prognosis of the disease. Now, however, that need for beds in all its drama has arrived. One after another, the departments that had been emptied are filling up at an impressive rate. The display boards with the names of the sicks, of different colors depending on the department they belong to, are now all red and instead of the surgical procedure, there is the diagnosis, which is always the same: bilateral interstitial pneumonia.

Now, tell me which flu virus causes such a rapid tragedy?

Because that's the difference (now I get a little technical): in classical flu, besides that it infects much less population over several months, cases are complicated less frequently: only when the virus has destroyed the protective barriers of our airways and as such it allows bacteria (which normally resident in the upper airways) to invade the bronchi and lungs, causing a more serious disease. Covid 19 causes a banal flu in many young people, but in many elderly people (and not only) a real SARS because it invades the alveoli of the lungs directly, and it infects them making them unable to perform their function. The resulting respiratory failure is often serious and after a few days of hospitalization, the simple oxygen that can be administered in a ward may not be enough. Sorry, but to me, as a doctor, it's not reassuring that the most serious are mainly elderly people with other pathologies. The elderly population is the most represented in our country and it is difficult to find someone who, above 65 years of age, does not take at least a pill for high blood pressure or diabetes.

I can also assure you that when you see young people who end up intubated in the ICU, pronated or worse, in ECMO (a machine for the worst cases, which extracts the blood, re-oxygenates it and returns it to the body, waiting for the lungs to hopefully heal), all this confidence for your young age goes away.

And while there are still people on social media who boast of not being afraid by ignoring the recommendations, protesting that their normal lifestyle habits have "temporarily" halted, an epidemiological disaster is taking place. And there are no more surgeons, urologists, orthopedists, we are only doctors who suddenly become part of a single team to face this tsunami that has overwhelmed us.

The cases multiply, up to a rate of 15-20 hospitalizations a day all for the same reason. The results of the swabs now come one after the other: positive, positive, positive. Suddenly the emergency room is collapsing. Emergency provisions are issued: help is needed in the emergency room. A quick meeting to learn how the to use to emergency room EHR and a few minutes later I'm already downstairs, next to the warriors on the war front. The screen of the PC with the chief complaint is always the same: fever and respiratory difficulty, fever and cough, respiratory insufficiency etc ... Exams, radiology always with the same sentence: bilateral interstitial pneumonia. All need to be hospitalized. Some already need to be intubated, and go to the ICU. For others, however, it is too late. ICU is full.

And when ICUs are full, more are created. Each ventilator is like gold: those in the operating rooms that have now suspended their non-urgent activity are used and the OR become a an ICU that did not exist before. I found it amazing, or at least I can speak for Humanitas Gavazzeni (where I work), how it was possible to put in place in such a short time a deployment and a reorganization of resources so finely designed to prepare for a disaster of this magnitude. And every reorganization of beds, wards, staff, work shifts and tasks is constantly reviewed day after day to try to give everything and even more. Those wards that previously looked like ghosts are now saturated, ready to try to give their best for the sick, but exhausted. The staff is exhausted. I saw fatigue on faces that didn't know what it was despite the already grueling workloads they had. I have seen people still stop beyond the times they used to stop already, for overtime that was now habitual. I saw solidarity from all of us, who never failed to go to our internist colleagues to ask "what can I do for you now?" or "leave that admission to me, i will take care of it." Doctors who move beds and transfer patients, who administer therapies instead of nurses. Nurses with tears in their eyes because we are unable to save everyone and the vital signs of several patients at the same time reveal an already marked destiny.

There are no more shifts, no more schedules.

Social life is suspended for us. I have been separated for a few months, and I assure you that I have always done my best to constantly see my son even on the day after a night shift, without sleeping and postponing sleep until when I am without him, but for almost 2 weeks I have voluntarily not seen neither my son nor my family members for fear of infecting them and in turn infecting an elderly grandmother or relatives with other health problems. I'm happy with some photos of my son that I look at between tears and a few video calls. So you should be patient too, you can't go to the theater, museums or gym. Try to have mercy on that myriad of older people you could exterminate. It is not your fault, I know, but of those who put it in your head that you are exaggerating and even this testimony may seem just an exaggeration for those who are far from the epidemic, but please, listen to us, try to leave the house only to indispensable things. Do not go en masse to make stocks in supermarkets: it is the worst thing because you concentrate and the risk of contacts with infected people who do not know they are infected. You can go there without a rush. Maybe if you have a normal mask (even those that are used to do certain manual work), put it on. Don't look for ffp2 or ffp3. Those should serve us and we are beginning to struggle to find them. By now we have had to optimize their use only in certain circumstances, as the WHO recently recommended in view of their almost ubiquitous running low. Oh yes, thanks to the shortage of certain protection devices, many colleagues and I are certainly exposed despite all the other means of protection we have. Some of us have already become infected despite the protocols. Some infected colleagues also have infected relatives and some of their family members are already struggling between life and death. We are where your fears could make you stay away. Try to make sure you stay away.

Tell your family members who are elderly or with other illnesses to stay indoors. Bring him the groceries please. We have no alternative. It's our job. Indeed what I do these days is not really the job I'm used to, but I do it anyway and I will like it as long as it responds to the same principles: try to make some sick people feel better and heal, or even just alleviate the suffering and the pain to those who unfortunately cannot heal. I don't spend a lot of words about the people who define us heroes these days and who until yesterday were ready to insult and report us. Both will return to insult and report as soon as everything is over. People forget everything quickly. And we're not even heroes these days. It's our job. We risked something bad every day before: when we put our hands in a belly full of someone's blood we don't even know if they have HIV or hepatitis C; when we do it even though we know they have HIV or hepatitis C; when we stick ourselves during an operation on a patient with HIV and take the drugs that make us vomit all day long for a month. When we read with anguish the results of the blood tests after an accidental needlestick, hoping not to be infected. We simply earn our living with something that gives us emotions. It doesn't matter if they are beautiful or ugly, we just take them home. In the end we only try to make ourselves useful for everyone. Now try to do it too, though: with our actions we influence the life and death of a few dozen people. You with yours, many more. Please share and share the message. We need to spread the word to prevent what is happening here from happening all over Italy.”

His original Facebook post.

Italian newspaper (Corriere della Sera, edizione di Bergamo) transcript.

#coronavirus #covid19 #italy #covid-19 #Daniele Macchini #i cried the first time i read through this #same way i cried when i read the account of the chinese girl who lost her mother to covid19 and then her father was put in quarantine and #then her brother #we forget there are real people attached to this

1 note · View note

speciallymary · 5 years

Text

Autoimmune disorders- Alopecia and Underactive Thyroid: Friends/Enemies Since Forever

I'm on the rollercoaster of trying to love myself while Alopecia is in complete control and deciding how fast new bald spots are popping up. I want to tell my story.

When I was in preschool, I started showing signs of thinning hair, but my mom didn't take much notice because I was constantly growing it back relatively quickly. She did notice that parts of my scalp were extra tender, and when messed with enough, caused redness and tiny bits of swelling to occur. She chalked it up to me being rough with my hair and her braiding my hair a little tight (which was never the case in reality).

Kindergarten: I started to complain of always being hot, being so incredibly tired, and quarter size bald spots start popping up. This is when my mom takes notice and starts bringing it up with doctors. Doctors say I may have a slow metabolism, causing my tiredness, I was a little bit bigger than most kids my age (but definitely NOT fat when looking back at my flat stomach and not touching thighs), so I retain heat easier. The doctor said I could be pulling my hair without my mom knowing, and said to come back for my next yearly checkup with concerns if it gets worse.

1st grade: the exhaustion hits me like a truck. I can barely make it through a full day of school without falling asleep in class. As soon as I get home, I sleep until I need to wake up the next morning to go to the babysitter's house. Most of the time, I sleep through dinner and breakfast, leaving only lunch as my actual meal of the day. My teacher, nurse, and mom come together and make a plan, I take a 20 minute nap towards the end of the day if I need it, the class gets more time to do homework in class, and I only am graded on the work I complete, even if I don't actually finish assignments. My dad was still alive at this time, and did not like that I was asleep all the time, but no matter what they did to wake me, it never worked. He then dubbed me his Sleep Beauty. My mom only recently told me that the school started questioning if I was being hurt outside of school, and apparently did involve a caseworker, in which I was interviewed during a play therapy session (which I don't remember) and my mom had medical records sent to show that the doctor knew the symptoms I was having and that they weren't from abuse.

2nd grade: The year my doctor realizes my diagnosis of Alopecia, but knows that something else is going on and refers me to a specialist, refusing to see me as he didn't feel qualified for my case since I was so young. This is when I was diagnosed. I met with a team of specialists from all over my state at a Children's Hospital an hour away from my hometown. They immediately know what it is what they walk in the room, but require blood testing to back up the diagnosis of Underactive Thyroid, which would take a few days after the visit to receive. They then tell me that my Alopecia isn't a stand alone diagnosis, and that I don't have a primary diagnosis with a secondary diagnosis. My alopecia is stand alone, but also entwined with my underactive thyroid. They hoped that the alopecia would only last a year, and that if they got my underactive thyroid under control, that it would help reverse the effects of the alopecia. I got to meet 3 endocrinologists in the state, and fell in love with the one that worked in the hospital that the meeting took place in. We made our first appointment with her, were given a wide variety of pamphlets, and sent on our way. The specialists did make one mistake, though. They thought my alopecia had just popped up, but I had it for at least 2 years at this point, which they would later realize when their theoretical year ended. This was the year that I lost A LOT of hair. I had to cut my long, straight locks to a short bob cut to help my hair look fuller. This was when I started asking questions about my hair dying, what an autoimmune disorder was, and if I would be able to beat it, whatever it was. This was also the first time I got to break a school rule: by wearing hats in school. My mom met with my principal and teacher, and I was allowed to wear a hat in school and would be encouraged to wear one outside during recess and outdoor activities to protect the fragile skin on my head. By the end of the year, I didn't have much hair left, but I had my baseball hats and bandanas, so I was okay. This was also when my class/school was told of my diagnosis with my mom and I's consent, because it was easier to explain it once and know what slightly new expectations there were.

3rd grade: This was the year I started the process of getting on the right medication and medication levels. It was determined that I was not a candidate for the shots in the scalp, which would have been once a month for me, and the only alternative at the time for me was medication. I had never had to take pills before, so my mom had to get creative in crushing pills for my crying self to be able to take them. This was also when I lost all my hair the first time. I felt a little naked sometimes, but I always had a color coordinated bandana or hat at the ready, so it was an easy comfort blanket at the time. My teacher spent a lot of one-on-one time with me, helping me with anxiety, self-esteem, and body perception issues. She also kept me inside when UV rays were high, because even through a light hat, my skin would still burn at times. 2nd and 3rd grade were the years that I learned to write out feelings through assignments for the first time, any way I could.

4th grade was a big year, in a good and very bad way. I gained about half my hair back, then lost my father in March of that school year. I almost instantly lost all of my hair from the stress and grief, but my teacher, class, and school were so incredibly supportive. I missed a week and a day of school, for the passing, viewing, and funeral of my dad. My teacher was also my first male teacher, and helped me learn to express myself to people other than women and feel comfortable doing it. He instantly became a pseudo-uncle for me, and helped me through the few bouts of grief that I experienced in his room. This was also the year we went on a camping trip to conduct science projects. An anonymous donor funded my trip, and all of the supplies I needed for the trip, as no one wanted me to miss out on the BIG school field trip because of the passing of my dad. I got to learn what family meant in every sense, and knew I was in a supportive community. This was also when my friends started answering what my diagnosis was for me whenever someone asked. It was uncomfy for me to say the same thing over and over whenever someone new met me at school, so my friends took over, and whole classes talked about what it was so that they didn't have to ask me, which I greatly appreciated.

5th grade was rough for me emotionally, and to be honest, I don't remember much past my emotional breakdowns, frequent visits to the counseling office, and regularly getting sick from medication changes that required me to miss a lot of school. A lot of good things happened that year, and my teacher (another male), was super supportive, and was okay with me randomly crying in class, or darting out to cry in a stall for a few minutes before returning to class with freshly dabbed eyes. He owned a floral and decoration shop downtown at the time, and ended up getting a stuffed animal from his store that I particularly loved and having everyone sign a card from the store to give to me during Feb/March in the school year, the first anniversary of my dad's death, which was one of the hardest. This was also the year that I became a library ambassador, so I got to spend lunch/recess in the library reading to kindergarten kids and helping them learn to love reading as much as me! (Tbh, I honestly don't remember how much hair I had that year, but I know I did have some growth, but lost it at least once during the school year). This was also when my endocrinologist realized I was not going to outgrow the Alopecia, and changed her perspective on my diagnosis. I was moved from a mild-moderate diagnosis to moderate-severe, which I have stayed ever since.

6th grade: I lost my hair yet again, but also became eligible for my first wig. This was also the first year that new kids arrived in my grade and didn't know what I had or what it was about, but everyone in my grade and below knew, but wanted me to be the ones to tell them. We actually gained the new classmate(s) the first week I had my new wig, and my teacher had to miss that week, so they couldn't help with making those connections as well. This was also the first time I lost friends because of my hair loss, as when I told these new people, they were shocked, but processed it and continued to be friends with me for a while before telling me that they didn't want to be around me anymore because I was bald and "had holes in my head." Most of my class didn't support them in these actions, but continued to be friends with them because of other connections and similarities. This was also when I had anxiety of going to middle school and having to explain my hair situation all over again and being judged. My teacher had a lot of conversations with me about this worry, and it was noted in my records so that I had "proper supports" in middle school.

7th grade: the year from hell. I was bullied from the few friends I had from elementary school, as I went to the other middle school than most of my elementary school friends. I had a plan ready, but knew that I would do it at school if I did it, because my mom had just gotten comfortable in living at home without dad for the first time that year. My exhaustion got worse, I lost a lot of my hair growth from the summer, and my symptoms were all over the place no matter the medication changes due to the amount of stress and anxiety I was under going to and attending school. Classes and the library were my escape, as those bullies were not in the honors classes that I was, and were mostly too loud for the library in the morning and during lunch. I had break downs every morning going into school, and my mom would have to drag me into the wrong door of the building to meet the principal and nurse at the doors, then have me wait with staff until the counselor came in to talk with me about what was going on. No one believed me that I was being bullied, and all thought I was grieving my dad's passing, but the librarian offered me a position in opening and closing the library every day with her and joining her during lunch hour after I finished my lunch. This is what saved me, and this kick started my hair growing back, and my stress levels dropping, which helped with my underactive thyroid.

8th grade: I had a whole new group of friends through the connections the librarian made naturally with me, and I was so happy and supported. A lot of personal stuff also happened in middle school, so this helped tremendously in me living a better life as a fully functional student with natural supports built in. My teachers were aware of my diagnosis and my loss at this point, and whenever I struggled, would encourage me to write out my feelings, walk me to the counselor personally, or have me complete assignments in the library with my now pseudo-aunt, the librarian. I also gained most of my hair back, and for the first time, it was shirley temple curly! Everyone was astounded, and the endocrinologist was excited at how much growth I had in one year's time, as no one in the midwest had seen that in cases similar to mine.

High school: my hair came and went a few times more, but I never hid anything except maybe wear a hat outside during marching band. I had a completely new set of friends because of band, and fell in love with the peer tutoring program in the special education department, so I had support in all forms. I did have some bad autoimmune flareups in which I got very, very sick very, very quickly. But living with a chronic illness, I was sick most of the time and wouldn't say anything about it because it was/is my normal. So the nurse knew that if I went to her office, something was really wrong, and most of the time ended up with me leaving school immedoately for a hospital or emergency doctor's visit. I wore my hair all natural from my memory, and I only grew my hair all of high school, except for one cut (which was one bigger trim of about 6 inches taken off in total). My senior year, I did have a little more thinning in my hair overall, and was afraid I'd lose it all at the end of high school, but my hair never had the straw-like consistency that it did in my younger years whenever I lost all my hair.

Freshman year: I grew it out more, to almost my butt, when I chopped it off to about collar bone length during spring break. That was so freeing to feel like I could do things with my hair again.

Sophomore year: I had my hair cut again right before I moved back to school for band, and the hairstylist was one I had never been to before but at the same studio I went to, and cut it to my ears. For a while, I was worried that it was too short. Everyone told me it would grow out, but I'm not guaranteed the time for it to do that, and explained that to people. The time I had in high school and the start of college was a gift, but the doctors always tell me that if I lose my hair, there is no guarantee I will get it back at all. Looking back at my band pictures, I was cute as hell, and didn't have to put my hair up under my shako, just pin back the front part of my hair to keep it out of my face.

Junior year to now: oh boy, I noticed spots popping up that I hadn't had in a really long time. I was always used to having at least 2 small spots now, but the spots started popping up all over, have joined into bigger spots, and now I currently have about half my hair with about 9 spots taking my hair away at different rates. It'll grow rapidly in some areas then randomly slow down. I am actually getting married next year, and I want my hair so I can have a fun hairdo, but I'm preparing for being patchy, in which I have agreements with people I trust that if it gets to a point in which I can't cover everything anymore, I'll shave it and do alternative gemstones on my head in place of a veil and hairdo for the wedding. I did all natural in childhood, and looking back at the pictures, I don't have the confidence to do long patches of hair again. I'm trying to accept the loss of hair again, but also love myself in my current state, as I may never be in this spot ever again in my hair journey.

I have been completely baby-butt bald, peach fuzz bald, patchy halos bald, full head of hair with minimal spots, and a fullish head of hair with major spots. My hair has been perfectly pin straight, wavy, curly as heck, and for the past several years, an exact 50/50 of either wavy and curly or straight and curly. The split is literally one half is on texture, and the other half is a different texture.

My doctors have told me I would never get my eyelashes or eyebrows back again, and that's mostly true. I have very faint eyebrows that are very thin that may or may not randomly grow in more full/darken in color, and I actually prefer no eyebrows for myself, as I actually raise my eyebrows in all pictures as a natural response to open my eyes more, and I don't look as crazy compared to penciled in eyebrows doing the same reaction in a picture.

I have never had and mostly never will have hair on my armpits, and I constantly surprise myself in how much hair some people have on their armpits, but support all the armhairs or lack their of!

I only recently learned how to shave my legs, because up until then, I would mostly lose my leg hair in the summers due to more exposure to elements and gain more of it back in the winters.

I have "thyroid syndrome of the eyes" in which my underactive thyroid affects my eyesight in not only blurriness, but also double vision and other visual impairments that have just recently finally started to be corrected with added prisms in all directions to my glasses that I had to first start wearing in 7th grade when I suddenly couldnt see much at all.

I get migraines and headaches easily, mainly because of the part of the brain that works with the thyroid and when my medicine is off, it affects that part of my head. I also have been way more light, sound, and motion sensitive in the past couple of years, but much more compounded in the last year.

But it is who I am, and whenever anyone asks me if I ever want to take my autoimmune disorders away, I confidently say no. Why? Because it makes me who I am today. I matured and still mature within myself which helps me accept others' differences as well. I connect with the individuals I work with in the special needs community that my coworkers, peers, and typical individuals cannot. I'm upfront with those I interact with about my disorders once we have an established connection and I feel safe telling them the information.

Yes, I do have problems with anxiety, trust, self-esteem, and body impressions of myself. But my alopecia and underactive thyroid know when to kick me in the pants a little bit to get me to realize different life lessons. It's made my heart so much bigger because of my struggles that I've gone through, am going through, and will go through.

I've been on the same medication since 3rd grade, with varying levels of prescription. But my tolerance is high, yet I can't change prescriptions due to me having horrific reactions to the other medications. There will most likely come a day in which my thyroid will stop working and I will have to have surgety to remove it and be on hormonal medication the rest of my life, but I'm always going to be on some sort of hormonal medication for the rest of my life anyway.

Also, I've struggled with getting the help I needed medically with anxiety and depression and being on a hormonal medication. My doctors wouldn't put me on any depression or anxiety medicine until I started college because they didn't want to effect my thyroid medication. So I have been in and out of counseling almost all of my life, and most likely will continue throughout my life when I need it. Now, I have the help I need with supportive and safe network, a counseling program, and the medicine I need to be my best. I also have connections to social workers and other specialists that can make immediate arrangements if my needs are not met ever again.

This isn't even my full story, but the thread of consciousness that I wanted to share right now about my autoimmune disorders. Thanks for reading all of it!

#alopecia #underactive thyroid #hypothyroidism #autoimmune disorder #mental illness #life story #my life #no armpit hair #prefer no eyebrows #stream of conscience #stream of conscious writing #stream of thought

2 notes · View notes

bee-kathony · 6 years

Text

Four Years | July 29th, 2014

January 2nd, 2014 - February 15th, 2014 - March 8th, 2014 - April 12th, 2014 - May 2nd, 2014 | Year One - June 13th, 2014

Year One - July 29th, 2014

The past forty-four days were some of the darkest days of my life. My cheeks no longer remembered what it was like to smile. I could try and sugar coat this by saying that it wasn’t all that bad but chemo sucks and brain tumours suck and they can all go fuck themselves.

Countless nights I spent awake in pain. Not even Jamie’s touch comforted me anymore. I was a shell of who I once was. It sometimes annoyed me how much Jamie was there for me. I should be grateful. I should be more appreciative of the fact that he had been sleeping in hospital chairs and missing so much work, leaving it all to Murtagh. It was the fact that I knew deep down I was wrecking his life.

If he hadn’t met me then he would be happier, that’s what I tell myself when I catch him dozing off in the chair beside me.

“Jamie,” I whisper, my foot stretching out to nudge against his knee.

He pops his head up and with a wide eyed gaze he comes back to life. “Sassenach, are ye alright?”

“Yes, I’m fine.” I can’t help but be short with him. It’s not his fault. It’s this damn medication.

“We don’t have any food in this house and I’m starving for once.” My stomach rumbles, confirming my need.

Jamie leans up and stretches his hands above his head, a tiny sliver of skin shows as his shirt raises. My eyes drift down his body and I feel nothing. Once, I wanted to pounce on him, lick his face and make love to him until the end of time. A bit dramatic, Beauchamp.

I love him, God do I but I didn’t feel sexy, didn’t feel like I was desirable anymore. Brain tumours are a turn off, in case anyone ever wondered.

“What are ye in the mood for, Sassenach?” He asks me cheerfully.

“I don’t know, just something that won’t make me sick.” Good luck finding that.

He stood to his feet and walked past me on the couch, then I felt a kiss on the top of my bald head, the scarf had been irritating my skin. “I love you, Claire.” He took a breath or was it a sigh and left the loft, keys in hand.

Tears of frustration begged for release but I wouldn’t give in. I wished so badly that I could show him how much I loved him. If we made it out of this alive then I would. I would show him with my mouth, with my hands, with my words I would tell him everything I loved about him.

What I needed right now was my little ball of fluff, Adso. Geillis had brought him over for a visit just last week and it pained me to see him leave. I was looking forward to the day when his little paws roamed the floors of this home.

My spot on the couch had become like a cocoon, a protective layer that encompassed me in warmth when I needed it and a shelter when I couldn’t stand to lay next to Jamie in bed, his body heat leaving me drenched in sweat.

An hour later, after finishing yet another episode of “Queer Eye”, a knock came from the front door. Who the hell could that be?

I rose weakly from my dip in the couch and padded over to the door, “What, did you lose your keys, Fraser?” He’d done it before, dropped them out of his hands and they’d fallen down in between that little spot between the elevator and the hallway.

Opening the door, it wasn’t Jamie I found, but a short, brown haired woman with brown eyes starting back at me.

“I’m probably no’ the Fraser ye were expectin’ but I ken the one ye were.” She smiled brightly but I still couldn’t place her.

Flustered, she stretched her hand out for me to shake and I gripped it like a fish, the strength in me gone a long time ago. “Jenny Fraser,” she said, “Jamie’s sister.”

Oh. I’d never actually seen pictures of Jamie’s family and suddenly I felt selfish for not having asked. We spent so much time focusing on me and my health that I had neglected him.

“Please,” I stood back from the door, “Come in, Jenny. Jamie should be back soon, he just went to grab some food.” Looking at the clock on the oven panel I realised that was over an hour ago, where was he?

“I’m sorry to drop by unannounced, Claire,” so she knew my name? “I was in Edinburgh for work, ye see I help manage the books at the Distillery and needed to visit some of our clients up here.” She had a rather cheery yet commanding disposition. Not unlike her brother, I thought.

“Oh, I didn’t know you worked with Jamie and Murtagh!” I led her over to the living room and took my place back in my cocoon. “He told me about your father’s passing, I’m very sorry.”

“Och, dinna fash, was a long time ago.” Waving her hand in the air, she then looked around at the loft like she’d never seen it. Maybe she hadn’t.

“Is this the first time you’ve been to Jamie’s loft?” I asked, curiosity getting the better of me.

Nodding, I saw something in her, a hesitancy almost. “Claire…” she met my eye, “Ye ken about Jamie’s scars? On his back?”

“Yes. I’ve seen them,” a blush creeped it’s way up my neck, “He told me about the plane crash and his recovery.”

Jenny pressed her lips together and fiddled with a loose string on her pants. “I’ll bet my life that he didna tell ye the full story,” she smiled and it didn’t make me nervous to hear this, only more interested.

“Well, why don’t you tell me and we’ll see if he has.” Leaning back against the softness of the cushions, I settled in as Jenny began to speak.

“There was a plane crash, that did happen. All of it, the recovery in the hospital, his arse in the air for everyone to see while his back healed,” she laughed and then continued, “during that recovery though, he wasna awake for most of it, ye see, Claire… and I dinna mind sayin’ this cause yer a doctor. His flesh it — it’d been shredded, parts of it down to the bone.”

“This is the part he probably didna tell ye.” My heart rate quickened then, anxiety creeping in. Was it a secret lover? Was I a mistress or did he have one? So many thoughts raced through my mind in the five seconds that Jenny paused before continuing.

“Our father, his name was Brian, one day he looked at Jamie and I could see the pain in his eyes. His only son, practically torn from him.” She gritted her teeth, “He had a heart condition but we didna ken that until the autopsy. My Da took one look at Jamie lying there, helpless on the bed and collapsed. It didna even matter that we were in a hospital when it happened.” Jenny sniffed and I reached forward to hand her a tissue from the box on the coffee table.

“Thank ye,” she took it and blew her nose, “The worst part was that Jamie didn’t fully wake up for another week and a half and by then we’d already had the funeral. We couldna wait for him to wake since we werena sure he ever would.”

“Oh Jenny, I’m so sorry.” While she told me, I had begun to picture it all in my mind. Jamie lying there, oblivious to the happenings around him.

“So when he finally did wake up, we were so happy as ye can imagine. Murtagh and I called the nurses and doctors right away. They checked him out and said that he would be okay but needed to remain on his stomach to heal properly. He asked about Da then,” Jenny looked down again at the loose string. “I ken he could see it in our faces before we even told him. He thought it was all his fault ye see, that if he hadna gotten hurt that Da would still be alive today.”

“He really thought that?”

“Aye, a stubborn wee fool he is, my brother. After he healed, I tried to get him to come home, to Lallybroch but he wouldna have it. He went back to his apartment, this was back before he moved here to Edinburgh, and shut himself off from us. The damn fool thought it was better if he wasna there to remind everyone of what he’d done.”

My heart was breaking for Jamie. I knew why he wouldn’t have told me the specifics of his father’s death, because he blamed himself. I began to understand why Jamie was the way he was, strong, caring and maybe a bit over protective at times. He’d seen me at my absolute worst but chose to stay. He chose to love me when I only had the smallest amount to give him back.

“That’s why I’m here, Claire. Ye see, I started working at the Distillery only four months ago.” My diagnosis was four months ago.

“Jamie came to work one day and told Murtagh that he needed an extended amount of time off. It’s his own business so he can do what he likes of course but Murtagh couldna handle it all on his own. Ye ken of course Jamie has had to work a little here and there I’m sure. I knew yer name because I overheard him talking to Murtagh about ye when he popped in one day.”

“After the accident and my father’s death, Jamie did shut himself off.” Jenny took another tissue, “But after a year he reconnected with Murtagh but he didna talk to me save holidays.”

I moved over on the couch to be closer to her and took her hand in mine. “I always thought I musta been a reminder of what he thought he’d done. When I overheard him say that the woman he’d been seeing, Claire,” she smiled at me, “was sick and he needed to take care of her — well it broke my heart. I’d always wanted to be there for Jamie when he finally gave his heart to another.”

“You still can be, Jenny.” I squeezed her hand, weakly but she returned it.

“Now I see ye and ken it’s no’ the flu,” her hand reflexively pointed up to my head and it was then that I realised I had been talking to her this whole time without my head covered. Usually when Joe or Geillis had come over I would wrap my head up in a scarf, I didn’t need to constantly be reminded that I wasn’t me anymore.

Before I could say anything the sound of keys jingled from outside the door. “That’ll be Jamie.” I released her hand and watched as the door opened and he stepped in, carrying three large bags of groceries.

“I didna ken what ye wanted so I bought… well I bought everything, come and take a —“

“Hi bràthair.” Jenny stood and walked over to the kitchen. I stayed seated and watched all of this from my spot on the couch.

“Jenny,” he sighed, “What are ye doin’ here?” His eyes shifted over to me and I just smiled.

“I came to see ye, it’s been so long and I —“

“I dinna want to see ye Jenny so if ye dinna mind,” he crossed back to the open door, “please leave.”

I thought Jenny would leave as she walked over to the door but she slammed it shut instead. Stubborn, just like her brother.

“Jamie Fraser. Ye havena talked to me and I mean really talked to me in almost four years. I hear ye talkin’ to Murtagh about a woman yer seeing and all I ken is her name,” her hand pointed back to me, “and that she’s ill.” Jenny crossed her arms and Jamie looked fully enraged. “But I didna ken it was like this Jamie. Ye shoulda reached out, ye know I woulda helped. Been there for you and her.”

Jamie was radiating with anger, his body shaking as he took hold of Jenny’s arm and started walking to the bedroom. Of course, we lived in a loft, a rather spacious loft but the bedroom didn’t exactly have walls to keep out unwanted noises.

Sighing, I leaned further back into the chair and listened to Jamie and Jenny hash it out, what other choice did I have?

“I know ye blame yerself, Jamie. For Da.”

“Ye dinna know what I blame myself for, Jenny.” He whisper-shouted back.

“Aye, I do. After Da passed ye shut everyone out. Ye thought it better that way, thinking it was yer fault and ye were a reminder of Da’s passing.”

“I was a — aye… I did shut myself out. But only cause I thought ye couldna bear to see my face. It’s cause of me, Jenny and you know it is!”

“Jamie…” a pause.

“He died and I wasna even there to say goodbye.” I wasn’t sure but it sounded like Jamie was crying.

“Ah bràthair, yer face is no’ too good lookin’ but I could bear to see it. All this time I thought ye hated me.”

“No, Jenny, I dinna hate ye. It was you who I thought hated me, for takin’ Da away from you.”

This heart to heart was gut wrenching to listen to. Jamie had blamed himself for so many years and distanced himself from the only sister he had. And Jenny had spent all this time thinking she was to blame.

“Yer a fool, James Fraser and ye know it. Can we have this over and done wi’ now? I’d like to have ye back in my life and I’d really like to ken yer woman out there.”

“Aye. As long as ye forgive me?”

“Of course bràthair.”

I turned my face forward as I heard their approaching footsteps. Jamie came up behind me and rested his hand on my shoulder.

“Mo nighean donn, I need to feed ye.”

“Yes sir, you do.” He laughed, a sight I hadn’t seen in awhile. Seeing the joy on his face stirred something in me that I feared had been lost.

“Will you stay and eat with us, Jenny?” I asked, noticing her looking over towards the door.

“Aye,” Jamie answered for her, “She will.”

We spent the evening eating, drinking - water for me - and telling Jenny of how we met. Our embarrassing, on both ends, encounter in the men’s restroom. The first date we had and finally my diagnosis. It was nice to meet someone that was so much a part of Jamie. All throughout dinner he kept his hand on my thigh and I felt that thing stir in me again; hope.

#four years fic #jamie x claire #mclairefras #july 29 2014 #jenny fraser murray #jamie fraser #claire fraser #claire beauchamp #outlander fanfic

162 notes · View notes

kristiabbeyjamesannafaith · 5 years

Text

So there is this thing.....

Notice a little facelift on this page? I have been relatively recluse for awhile, not posting much. Who really wants to read stuff about my health (or lack thereof) on a regular basis? There is this fine line between being “sick” and “disabled”. It is sort of this crossover point where things seem less relevant when the status quo means things are shitty. One lands fully in the “disabled” category when things are shitty and there is nothing left to do but cope. It is a sucky space and one that feels permanent. Once that happens, a person is no longer “sick”. And that comes with the assumption that says “I am not going to get better”. And then life enters this space that is rather unpleasant. My personal experience involves feelings such as embarrassment that I am not strong enough to overcome the complications that have taken over my physical being. I feel grief over the loss of my financial consulting practice. I see my clients faces when I watch the news about the markets and I know who needs calls during certain times and I can’t call them. I feel ashamed when I can barely pull my wagon at the ball field or when I can’t get out of the bed in the morning. I have become mostly recluse and have intentionally made my village smaller because I think “who wants to always hear about how shitty I am and that I am DISABLED”. I have felt less than, not good enough. I have tried to accept this long term diagnosis over the last year and it always comes back to me thinking one of two things, depending on my strength of that day.

1. “I was not strong enough to overcome the ‘sick’ and now I am 42 and am forced to live the rest of my life DISABLED.

2. “It is impossible that I am going to live the rest of my life like this. There must be something we are missing and I must figure it out”

The days where I have spent time processing what we could be missing has led us (myself along with my docs) to discovering two problems that can be solved and will most certainly take me back through the “sick” phase. At the end of that, we pray that I reach “wellness”.

I pay very close attention to my body and noticed a pattern with my chest pain. While I am always sore and always feel the sensation of broken ribs, there are times where things feel “different”. Those times are directly related to activity. For example, I feel like I am recovering from a fresh surgery if I mop the floor. I can feel the muscle pulling away from my chest wall if I lift something that is too heavy. While RSD can cause that overreaction, I have also noticed redness and swelling associated with those times of increased pain. I also seem to have a lot of low grade fevers. All of these symptoms led to me researching my situation and increased conversations with my QB1 (internist) for him to think about what I have learned by paying close attention and logging my symptoms and activity.

As a part of this self discovery, I found a lot of information about RSD being considered an autoimmune disease, which has long been on our radar. I have severe inflammation in my legs, hands, arms..... Bascially I have global inflammation that is felt intensely and can be seen with the swelling and redness. QB1 has been asking me to try a round of steroids to see how my body would react. After the grind of softball season and with a desire to not stay DISABLED, I agreed to try them. I took 6 days of prednisone and while I was chasing fruit flies around the house with the vacuum, my body calmed. It was a beautiful feeling. The only problem was that it did not calm the pain and symptoms in my chest.

We learned a tremendous amount from my research and my doctor listening to me. We learned that while I do have RSD from all the nerve damage, I also have two separate issues going on. We decided it was time to go back to the surgeon to have my reconstruction looked at in case we were missing something.

We were missing something massive. The animation deformity that I had two years ago is now a grade IV. That means the muscle is detaching from my chest wall again, much worse than before. In addition, the space that was left when implants were removed is filled with encapsulated sermonas. Encapsulated means that my body can’t absorb the fluid. Seromas are collections of fluid that can be inflammatory/infections/lymphatic. I also have lesion that is necrotic tissue and will likely continue to persist. These are all very serious issues and make my symptom reports credible.

It is easy to become complacent. But it is hard as hell to live resigned to the diagnosis. Sometimes, that is the only choices. Now I have new choices.

My girls were with me when we saw the surgeon. They wanted to be there to make sure Dr. K did not suggest unnecessary surgical intervention. Being at nearly 30 operations, that is a reasonable request from my children. They have seen so many operations go wrong. The problem this time is that the issues inside my chest are not safe. They are likely causing fevers and contribute to me feeling sick all.the.time. As Dr. K explained that they have learned a lot since my last surgery about how leaving open space in a reconstruction site is bad. The girls started crying and then tuned him out. His prognosis led to a recommendation of a highly invasive surgery to repair these problems. I don’t want to explain the process of the repair, but I will say that it will require a two day inpatient hospital stay, two drains on each side for 4-6 weeks and no use of my arms for the same amount of time. We left that appointment without consent as I needed to talk to QB1.

Three days later, I sat with Bill and we talked for an hour. We had established a golden rule to my medical care which said “no surgery unless it is required to save my life”. This intervention is not a matter of life and death right now. Down the road, the seromas could make me sicker, even septic. And we also talked about the positive side of potential recovery from this debilitating pain and a massive improvement of my quality of life. We also discussed that we now know that I respond to meds that treat autoimmune disease for the global systemic troubles. At the end of the hour, QB1 said he felt nauseous but he agreed with the surgeon and felt I should proceed with the surgery. In the end, I will have very little of my reconstruction left. I am ok with that. I hate them anyway. I look at them and see “DISABLED”.

September 4th 2019 I will go back to the operating room. I have known for a long time that my chest area issues were not only RSD and it was up to me to advocate for myself to insist we were sure of our plan. Things change and I refuse to be complacent.

It seems to me “that thing I have to do” as we say in my house will reverse the clock. I will go from DISABLED to being sick again for awhile. I am terrified of this. I have prayed, internalized, thought about the plan 2000 different ways and in the end we know what needs to be done. I am 42 years old and I am not ready to throw in the towel, especially when I have serious issues that need addressed. There is no guarantee that I will make it all the way to wellness. But there is a chance. A damn good chance. Because after the surgery, we will start treating the rest of my symptoms with autoimmune disease drugs.

My team of docs and family are all throwing the Hail Mary pass to bring me back to wellness. I have to find myself again. I have to feel relevant again. I have to have purpose again. So on September 4th, we are throwing that pass and I am going to catch it in the end zone. I am going to fight like hell for wellness.

I share this for two reasons. The first is that many of you have been on this journey with us for a long time and I feel it is important to bring my village into the game. Which leads me to the second reason I share.

I am going to need help. My family has us covered for the immediate post surgical care. But in order for this to have the highest chance of success, I MUST FOLLOW DOCS ORDERS. While those drains are in and my body is healing, I can’t mess around. I am not to use my chest muscles for anything for 6 weeks. Which means I really can’t use my arms. Abs will be driving so we are good for day to day stuff. Plus, I will have home care and home cleaning assistance.

I am doing something I rarely do. I am asking for help. Abs is still playing on the USA Elite Softball Team and I will not let this stop her. We need to go to Strausburg every weekend (either Saturday or Sunday). Abbey will drive our car, we just need another adult to tag along for those games to keep me from pushing too hard or to ride with her if I am unable to do it. I do not yet have the schedule, but when I do I plan to post a “volunteer” sign up genius. I am going to be responsible and understand that I can’t do this on my own.

As always, my primary goal is to not affect the girls and their progress. This is a critical year for Abbey and softball. I know we have enough support to get her through the fall season so she does not have to leave her team. That is not an option. Abbey can help me cover Anna’s volleyball schedule.

I will have the house ready with easy to eat foods, but I will also put out a volunteer sheet in the event anyone wants to cook dinner or just come hang out or help with a shower. I am doing this because this is what my village always asks me to do and I always become too stubborn and feel like a burden. This time, I can’t afford to do that. It is my last chance at wellness and I will take all the help I can get. I know that in the moment, I will try to turn away offers for help and I ask all of you to simply take away my power to turn you away. I need to heal properly and I need help to do that.

If you have read this all the way through, I know you are part of my village. I know there will be worries and opinions about this, but I ask that everyone trust in the work we have done over the last year to reach this point. I need nothing but positivity to get through this and so do my girls.

Ok, so that was a heavy message to deliver. I sit in Kentucky in severe pain from using my arms to drive (even though Abs and I have split time) and am reminded why I have to do this. Some might wonder why we have chosen right now to look for potential collegiate homes for Abbey. This is why. September 1st the recruiting gates open and we need to have an idea of where Abbey would like to end up. There is only one way to do that. Visit schools. This is a terrible time to be traveling. Another difficult decision and one I do not regret.

If you have read to this point, than you for being my village even when I closed my village. It is opening back up and I pray some of you will come back in and surround us with love and support during this really challenging time.

We are scared.

We are hopeful.

Hopeful wins every time.

#thankyou

0 notes

rarediseasesurvivorwoman-blog · 8 years

Video

youtube

365 Days of Autoimmune Illness- But I’ve Got Stamina

A year ago this week I was blaming yoga class for every odd ache or pain I couldn’t explain away. A pinched nerve must be the culprit, causing a vice-like strangling sensation around my neck and pins and needles that went from my face, down my arms, to my fingertips. Intense back pain followed. I brushed it off as newbie yoga pains and cursed one too many swans, cat-cows, downwards dogs or some other overzealous yogi animal. My hands became weak and I noticed my fingers had started to curl inward. The fun didn’t stop there and food began getting stuck in my throat and panic that I’d choke. Even my speech at times sounded a bit slurred. Within weeks the numbness had spread down to my legs and each step became increasingly difficult and my limbs so heavy it was as if I were knee deep in molasses. I was in deep for sure when the piece de resistance detonated in electric shocks of pain reverberating all over my body. That my friends is when I landed in the emergency room.

Fast forward three weeks and after a variety of tests including brain scans, nerve conductor tests (electromyography, nerve conductor studies), and a spinal tab (lumbar puncture) I had a diagnosis. Say hello to a rare neurological disorder called Guillain-Barre Syndrome.

Guillain-Barre Syndrome (GBS) causes your body’s autoimmune system to get confused and go to town on your peripheral nervous system. Once the coating of your nerves gets damaged, it can’t transmit signals as effectively and all hell breaks loose. First signs are usually weakness or tingling in your hands and feet but GBS is an ascending disorder where paralysis can spread to your core and in some cases even the diaphragm. Yup, that means in extreme cases you can’t speak, eat, or breathe on your own. You endure this waiting game until your body plateaus at about 4-6 weeks and begins recovery which ranges anywhere from months to years. The good news is that despite the sensory and motor damage, nerves have the ability to regenerate on their own albeit a snail’s pace. Let me put it this way, my first diagnosis was moderate GBS with a 3-6 month recovery time frame. If you haven’t already inferred from the blog title, GBS and I have been hanging out now for a full year.

Here’s where you come in. You’re most likely reading this blog because you’ve been recently diagnosed with the same illness, know someone struggling through it, or have some form of autoimmune disease. I have had 365 days of trials and tribulations to share and hopefully help you build stamina to survive and not succumb to this journey. The most important thing to remember is we have one of the only neurological diseases that has the potential for full recovery. There is light at the end of the tunnel in which we’ve fallen.

I’m taking a page straight out of Oprah’s “What I Know For Sure” in GBS speak with my top lessons learned. Some of these ideas I’ve previously written about but after 365 days to reflect, these are my go to GBS hacks ;). Talk with your doctor before making any changes however to your current GBS recovery plan:

1. Get a Second Opinion: I’ve had one hell of a time getting in to see top docs in the GBS world. My neurologist and primary care doc are wonderful but both very forthcoming about only having seen a few cases of GBS. When I finally found a local doc with extensive GBS experience he was no longer taking new patients. I didn’t give up and thanks to a contact was able to get a consultation. I learned something new which surprised me- did you know that autoimmune disease can trigger preexisting conditions? It explains my roller coaster recovery and why symptoms that should have healed were still thriving. I’m now managing my old illness so that it stops intensifying the GBS symptoms and prolonging my recovery. Make sure your neurologist knows your entire history as old ghosts may be impeding on your road to recovery. A second opinion could open your eyes to some new information or reinforce that you’re in the right direction and to continue on that path.

2. Stay Connected: It’s important to continue living your life through GBS and there are work arounds to help make that possible. A myriad of articles site depression in conjunction with GBS and the irony here is that most experts suggest to keep moving to combat getting depressed. Paralysis makes that a little tricky but what can’t be restricted is mental momentum. Stay connected with the outside world in other ways- voice automated software allows you to write and stay online without needing your fingers to do the work. If you’re able bodied enough to get in a wheel chair, or other support aids, get mobile. Regain as much normalcy as you can wherever and whenever possible. Consider speaking to your supervisor about a transition plan or a flexible schedule when you feel ready to return to work. Mental momentum helps keep you from getting stuck.

3. Get Over Yourself: GBS is humbling and humiliating at times but we can get in our own way when we’re too proud to ask for help. I’ve written before about how I was stuck on a stationary bike at the gym because my legs went numb and I knew I couldn’t get down by myself without doing a face plant. (My cane had even fallen over and was out of reach.) Eventually my husband and daughter came to my rescue and my legs were so numb they essentially had to hold me up by the armpits, my feet trailing behind as if in a drunken stupor. I knew I had pushed myself too hard and cried when we finally made it outside and out of sight. Find solace is knowing that your limitations are temporary and your pride is never worth putting yourself in a dangerous or compromising situation. Plus you will laugh at this someday- I’ve told that story about a dozen times and giggle with every rendition.

4. Continue Indulging Your Passions: I’m an avid music fan and bought a turntable when I was first diagnosed as I knew I wouldn’t be healthy enough to leave the house. Record store shopping wasn’t in my near future but there are retail services that deliver a vinyl of the month right to your front door. There are also a variety of online learning resources that cover every topic under the sun and allow you to stay plugged in when you can’t get out. Book Clubs have even gone digital with online discussion groups that may not offer wine and commiserating with your BFF’s but an eclectic array of opinions and perspectives. And of course the thrift shop has not been left behind in the digital age and do the scavenging for you via resale websites that buy and sell second hand clothing and other items online.

5. Free Your Mind: Experts recommend meditation to help ease pretty much whatever ails you and that includes chronic pain. It’s not a cure of course but studies site the overall health benefits and view it today as mind-body complementary medicine. There’s plenty of free apps out there to get us started from Headspace to Omvana and you can choose the length of your meditation session as short as three minutes. There are also some killer positive psychology podcasts to grab your attention that spotlight authors, yoga instructors, scientists, and musicians who share their struggles and insights on kicking ass even when life is kicking yours. I’m a huge fan of The One You Feed with Eric Zimmer and Chris Forbes who gift a new interview to the public every week.

The other obvious suggestions are more sleep, eat better, detox your cleaning and grooming products, and stay as active as you can within your new limitations. Again, please consult with your doctor before making any changes, but I hope my top 5 will increase your stamina and be a breath of fresh air in your fight, outlook, and your perspective. I’ve come a long way from being unable to cut my own food or hold a glass to drink, unable to drive or get up the stairs without being carried, pain is mild now and the numbness is disappearing, and yet I know I’ve had it easy compared to many of you dealing with extreme cases. I do have bad days where the dynamic duo of disease takes me by surprise as I’d been feeling good for so long and not anticipating a resurgence. It’s easy to sound brave when you’re feeling good. It’s the 3 am intensely sick moments, when I’m crying and wondering if I can take much more of this that I remind myself I have stamina. It’s because I’ve endured this for a year that I can handle another. It’s because I’ve come so far that I can go further. And it’s because I’ve been pushed past what I thought was my limit that I know I still have more left. It’s those moments that take the wind right out of our sails that also define who we are and why we’re never going to give up. For my fellow GBSers- this blog and video are a tribute to you. xo

#GBS #Guillain-Barre Syndrome #guillain barre #autoimmune disease #neurological disorder #sia #the greatest #the one you feed

1 note · View note

maggiehanhamgrad701 · 3 years

Text

All About Annie

MY LOVES

Its about time we become straight up and just say what we are all thinking right (lol)? So here I go, here at the most annoying, frustrating and honest things that float to my brain when I think of Endometriosis.

HERE ARE THE CONFESSIONS OF AN ENDOMETRIOSIS SUFFERER\

Yeah, sorry to get straight into it with the gorey details. However the amount of underwear ive had to handwash in the shower, or are to far gone and had to be thrown in the bin is so high I have lost count. Might I add it really sucks when I treat myself to a beautful sexy matching bra and undies set and after the first wear I have to bin them.

2. Constant STI/STD Checks

OK this one for me is a serious annoyance. The fact that I have probably had more check-ups than a sex worker (no hate) is absolutley ridiculous. Its even more frustrating when I explain that ‘I was literally tested a month or 2 ago and havnt had sex since then’ and still get poked and proded amazes me. Even more crazy is the fact me and my boyfriend were given pills to take for an STD even though we both tested negative more than ten times, but just in case we had to take them. I have endo, not a STD mate.

3. “OMG I get really bad period pains toooooo”

Look, I know you trying to be supportive or whatever by saying this however this one one of the most offensive things you can say to an endo sufferer. You may get severe period pains and that sucks, but the fact that you think endo is just period pains is frustraing. When you can hardly get out of bed for weeks on end, talk to me.

4. Greasy Hair and Hairy Legs

You know you are having a bad episode when even the thought of showering is draining let alone actually completing this task. So to say I literally get in and out would be quite a good description. My poor boyfriend putting up with my hairy body and my poor, poor cute outfits being let down by a greasy bun. Oh the joys of fatigue.

5. Paying for Pads and Tampons

This stuff is expensive, espically when you bleed for 6 weeks straight. Goverment listen up, fund ’em!

6. When everyone you meet suddenly has the ‘answer to my prayers’

Im just not even gonna…….

7. “My Aunty had a baby and thats how she cured her Endometriosis”…..

First of all, CURE – LOL, second of all, whatever rock you live under, please remove yourself from it and educate yourself, Pregnancy doesn’t help everyone people!!!!!!!!!!!!!!!!

8. When the Staff in the Emergency Department think your a Drug addict

We all must have been here right? The funny looks, the whispers and stares, the “are you sure your really in pain hunny” chats. A common complaint from a lot of woman who deal with Endometriosis is they are made to feel like drug seekers. Seriously? Do you think I want to be lying in a cold, loud hospital wing on a Tuesday night at 1:13am instead of my warm cosy bed fast asleep? Do you really think if I had a choice I would like to be hooked up to a morphine drip filling myself with pharmaceutical crap?? NO I AM NOT SEEKING DRUGS! But I would really like them to help get rid of this pain so please come to your senses and realise I am in desperate need of your help and assist me in getting sane and comfortable enough to head home, thanks 🙂

9. The wheat bag is just never hot enough

Ok, how many of us have literally nearly burnt ourselves from frying our skin with an extra hot wheaty? (I imagine you are all raising your hands at this point) When the pains are so bad it is literally impossible to get your heat device hot enough to even slightly make the cramps bearable, there is so no saving you lol.

10. “Does like, that mean you can’t ever have babies?”

Firstly, sit down you insensitive human. Secondly, my chances do become slimmer then normal, thanks for reminding me 🙂 isn’t it actually the worst when people don’t even think about how this question is going to make you feel? So cut throat it hurts.

11. Painsomina

100% is a thing. 100%. You are so sore, that you can’t even sleep. But you are so tired and exhausted from being in pain all day and you just wanna sleep. But you can’t, cos your in pain still and you cannot get comfortable no matter how hard you try or how many painkillers you take. You are just awake, dying a slow death whilst watching time slowllllllly tick by.

12. Explaining to your new partner what is wrong with you

Isn’t the “it sometimes hurts to have sex” convo literally the worst? Explaining to a male who has it drilled in his head that periods are even more taboo to talk about then the devil, that what Endometriosis is and how it effects you, ughhhhhh such a drag. I actually have now decided we should get like gold medals after having this conversation?

13. The initial convincing the doctors theres something wrong with you saga

Omg how did I nearly forget this one? THE ABSOLUTE WORST! Trying to convince a medical professional that your BODY HATESSSSSSS YOUUUUU and them not believing you for idk, like 8 years (using that number as its the average time a girl has to wait for a diagnosis) is so horrible. I remember the “take some pandadol, its just a bad period” chats like it was yesterday. You leave feeling so deflated and so mental

14. The after surgery gas

Haha k, I’m sorry, we have to discuss it. The first few days after surgery, and all that gas that they have pumped your tummy with is leaving your body, so embarrassing lol. You feel so un feminine and its so unacceptable. With no choice in the matter, “Pardon me” becomes your new favourite saying

15. When tired really, reallllly means TIRED

I literally hate it when I get to this point. When you actually have to put thought into picking up each leg when you walk. When simple tasks such as the dishes, folding the washing or brushing your goddam teeth feel like an olympic race. Once the fatigue takes over, the only thought I can concentrate on properly is getting myself to bed.

16. The bloating

You don’t know bloat until you have meet the Endo belly bloat right? Being that bloated sucks, especially when it means you can no longer eat your favourite chocolate unless you want to deal with the 4 month pregnant belly look. Even worse, looking pregnant when you run the possibility of never actually being able to be pregnant – can suck it.

17. Having your period, like all the time

SO many of us have been here – the never ending period. The waiting for it to finish and it never does. The loosing count of how long it has been since you didn’t have to change a tampon. The “OMG WHY WONT YOU GO AWAY” tears whilst sitting on the toilet unwrapping yet another night pad that will only last an hour because the flow is so heavy. Lets all have a moment of silence for all those who have been there, we deserve it.

18. You become your friends and families pharamcist

“So, can I take these two medications together?”

“You know that thing I got off you that time I felt nauseas, can I take some home with me?”

“I have a headache, do you have anything that will help?”

“Will I be fine if I take this without food?”

“How many of these can I take at once?”

19. Cramps

Its an obvious one, yet one that still needs to be addressed. How flipping sore are those cramps though? Cramps in your belly, cramps in your back, in your legs, in your actual vagina! Like enough is enough. However your body doesn’t understand that saying and just keeps throwing you cramps on cramps.

20. Calling in sick for work

Having to try and explain that periods are not an easy task for you and that you need to stay home in bed to your manager is not a fun or ideal task. Having them believe the severity of it can be so hard. Especially when you did this last week, and now you have the same problem and they can’t quite get their head around how you have your period again in such a small amount of time? Like when is ” I have my period and I have Endometriosis so leave me be” going to be an acceptable reason for a sick day? I vote it should be now.

Guys, honestly lol – I could sit up all night typing because the list seems to be never ending. Feel free to add “the confession you wanna make but never say” into the comments below – I can’t wait to see what you all have to add and what I’ve missed!

Hope you had a lil laugh relating to the above.

0 notes

kyliesolis · 5 years

Text

I Adopted A Dog! :)

I have wanted a dog for so long. So long. There were so many times when it wasn’t the right time, college when I was living in a dorm, and when I was so busy I couldn’t think straight, with almost crippling anxiety, and the time after college when I wanted to move to Germany, and then did. But for a while now I have been back. I have been wanting a dog. I have been telling myself that I shouldn’t get one for a variety of reasons. I have been looking at dogs on Petfinder and other adoption sites “just to look” as some form of perverse torture I have been inflicting on myself. I have been sitting by the pool, and by the fire, or walking around the park or the neighborhood, thinking, it sure would be nice to have a dog right now, and being sad about the fact that I shouldn’t get one for whatever dumb reason.

Then there was this day where Ron, my husband, showed me a picture of a “cute” dog on the local pounds website. She was a little poodle mix. He was funny about it, saying “oh, we could go check her out tomorrow.” But I know a bit about how pounds work, especially when the dog you are wanting to adopt is not a pit bull mix, so I insisted on going now.

The car ride was nerve-wracking because it took too long. I remember seeing a trucking sign that had a dog on it and being so glad we were there, then waiting ten more agonizing minutes because we weren’t.

In the end, it took forever to get there. We walked up to the guy at the desk, nervous, and asked to meet the dog we had seen online. The guy sent us to the waiting area, but then called us back, saying to go through the dog enclosures and find her, and bring her papers back.

We walked back through the sad, precious, yelping dogs. When we got to the cage where she was supposed to be the cage was empty and her papers were gone. If you’ve been to a pound you probably know what this means. I had a feeling, but we stood there anyway, waiting hopelessly. Then she came back, in the arms of another man. He was adopting her.

We walked back to the main desk sadly. We were prepared to leave. We thought maybe this was a sign getting a dog wasn’t meant to be right now. Maybe this happened for a reason. But I was so sad, and I had felt so purely, blissfully happy when we were headed to the pound. So even though walking through the whole pound would be a difficult and sad experience, we decided to do it anyway. Just in case we saw another dog that made us feel the same way.

We walked past about 20 sad, abandoned, pit bulls. Many of whom had pooped in their enclosure and rolled in it. We passed a lot of sad chihuahua’s, some howling hounds, a beagle-hound, about 20 more pit bulls, and while I love all of these dog types, our studio apartment wouldn’t have been the home for them. Then we saw a little dog, just laying in her enclosure. She looked sad. I sat next to her. Saw her stupid name, (which I won’t repeat for her safety, because she was seized from neglectful owners). I said hello, offered her my fingers. She looked at me, but just lay there. I sat there for a while, making soft sounds at her. Ron and I watched her, talked to her. We researched her assumed breeds a bit. Then we decided to pull her papers and ask to interact with her.

We took the papers to the kind man at the desk, and he sent us back there, saying someone would come. We sat there on the outside of her cage for a long time before someone finally came to let us take her out. Watching her flinch as the other dogs bark.

She didn’t want to walk when the person came to take her for a visit with us, she had to be carried. She made what I thought was a growl— which I didn’t blame her for– given her circumstances— but was actually a snorfle, when the woman picked her up.

Then we were taken to an only partially outdoor area. She sniffed around a bit, and went potty. We gave her some time, just chilling there with her. Talking to her. Then she came up and sniffed our hands. We slowly but surely fell in love with her. Ron said “I think we’d like to adopt her,” to the woman, and I felt so happy. We sat there with her a few more minutes, letting her sniff our hands more. Then I said, just to be sure because it seemed too good to be true, “you want to get her right?”

We “pre-adopted” her. She had only just arrived today. She still needed a checkup, shots, and spaying. And she needed a bath too. We were told that we could “pre adopt” her now, and in a few days, if she was medically cleared, we could come pick her up.

We went home so happy, Ron told his parents the story. We began to half enjoy our weekend, half wonder about our dog, or in my case 10% and 90%. I just wanted her home, where we could know she was okay. Was it okay to call the pound for updates? Visit her to make sure she was okay? (yes, no). She was always on my mind. I obsessively looked at the pictures I had taken of her, wondering if she was okay, what she was doing, if she was scared, thinking we didn’t want her, et cetera. I was actively missing her when she wasn’t even our pet yet.

We began bouncing names off each other, Ruby? Thea? Zinnia? Willow? A bunch of others I don’t remember. We decided on one surprisingly quick.

That Saturday we went to the pet store to get her possessions. They were really nice about it, giving us a book of coupons since we were adopting a dog. We got a bed, crate, some treats, some food, a hairbrush, a cute squeaky toy, a Kong, a crate. A lady who had seemed grumpy at first got really into helping us pick out the treats and giving us advice based on her dogs, who were also rescues. We got a collar and printed a name tag.

We shouldn’t have done that. Rescuing can be a heartbreaking process, I will warn you now. Don’t buy the things until you know you can get the dog, i.e. the dog and the adoption papers are in your arms.

We set out our future dogs possessions in our house, but were at least smart enough to leave the labels on them just in case. There was an unoccupied dog bed with a cute red toy shaped like a dachshund. Also a cute water bowl and food bowl. Just sitting there, waiting for our dog.

We started calling the pound but they never had new information. Sunday became Monday and we began checking our dog’s online profile obsessively. We made sure they had listed her as “pre-adopted.” We watched as they changed her gender from “female” to “male-neutered.” We wondered if it was a mistake. We looked at the dog we originally came for’s page and saw that she had heartworms and dental disease. We saw the pounds warnings that heartworms and the treatment are potentially fatal and that both heart-worms and dental disease can be very expensive to treat, and that this would be discussed with the future owner at pickup. We felt so bad for that dog, and for her future owner, wondering if he would still get her. Not because we wanted her, once we met our dog we knew we had somehow lucked into finding the best dog for us, but because we thought it was sad and that he probably wouldn’t get her. Then Ron looked at our dog’s site again and saw the same diagnosis posted.

I cried all day. I researched the sicknesses, saw the potentially thousands of dollars it could cost, sought council from my wonderful aunt who regularly rescues pets that are elderly or have significant medical issues. Realized that we probably shouldn’t get our dog.

We tried to talk ourselves into and out of it. I don’t think I realized just how badly I wanted a dog until there was a hole in my heart where one that we had only spent about an hour with was.

I told my close friends and family who I had told about the adoption what was going on. They were all kind, and all had different advice. Most of them said I probably shouldn’t get this dog, but another one would come along. My mom—incredibly kindly— offered to help me pay for any medical bills which was the nicest thing anyone has ever done for me, but I would have felt guilty accepting this offer. Some of them suggested getting a puppy from a breeder to avoid this heartache. I will freely admit that I strongly considered it, and now understand a bit more why people choose to do so AS LONG AS THEY GO TO A REPUTABLE BREEDER WHO ALLOWS THEM TO MEET ALL THE DOGS INVOLVED AND SEE WITH THEIR OWN EYES BY PHYSICALLY GOING TO THE PLACE WHERE THE DOGS LIVE AND MEETING EACH AND EVERY DOG THAT THEY ARE LOVED AND CARED FOR LIKE ANY OTHER PET WOULD BE. Do I need to repeat that for the people in the back? No, okay. Anyway, a very sad night passed.

We called the pound but they had no information, only that our dog was indeed a boy, not a girl. Apparently, they had just guessed he was a girl without checking, but upon going to fix him, well, you get the picture.

Then it was the next day. We called the pound as soon as they opened, and they wouldn’t give any information over the phone, insisting we come in to talk about it. I knew this would be a mistake because I know myself and I know that as soon as I saw our dog I would scoop him into my arms and never let go no matter how many dollar signs were involved. So I said that we should wait until Ron could get off work and go in together. He was able to get off early, and I went in armed with the hope that I wouldn’t cry and a long list of questions.

We got there and they brought us to the customer service area, acting like it was a normal adoption, saying they would bring our dog out as soon as he was available. I hesitantly brought up our concerns, and they gave us some paperwork about the sicknesses to look over and said that a vet tech would come out to talk to us. They were acting like it was no big deal though, which had us kind of thrown because the information posted online on his adoption profile had sounded so dire.

I don’t remember much from the conversation, other than that he had already been treated for heartworms, and that the treatment has a 95% success rate, but we will have to test him again for heartworms in six months. The vet tech recommended a clinic with much lower costs for dental work. We asked to see his teeth and they looked surprisingly good, mostly white, with just a bit of browning on the back teeth.

So we left the pound with our dog and brought him home.

In hindsight, I would like to say that I respect the pound and why they do what they do, the fact that they warn of the worst-case scenario in case the people adopting the dogs are not prepared for that scenario is a good thing, but it probably scares a lot of people away from dogs that could have been perfectly fine. They do that for a reason though, they don’t want those dogs to end up back in the pound a few weeks, months, or years later, and they don’t want those dogs to be kept but neglected by owners who love them too dearly to get rid of them but can’t afford to pay their medical bills.

Our dog is now at home with us and we love him so much. He is happy but shy, which I don’t blame him for at all, and he is showing remarkable bravery every day as he hides for a little less time. Naturally I have taken hundreds of pictures and want to show them to you but I won’t be posting any of them publicly for a few months because of the circumstances surrounding the adoption. I also don’t want to say what breed he is or what he looks like for the same reason, so thanks for understanding. Also, most of the stuff we bought for him when we thought he was a girl was actually pretty gender neutral so we didn’t even have to return it.

In the end, I think I will still adopt my future dogs because I think it is the right thing to do, but if my experience has made you feel like though you want a dog, your heart is too fragile for the rescue process, then know that I understand as long as you do it the right way, which I alluded to above, but you should research more on your own because there are a lot of dogs who end up in horrible situations care of bad breeders.

#dog #adoption #rescue #rescue dog #adopting a dog #heartworms #dental disease #pound #shelter

0 notes

gordonwilliamsweb · 5 years

Text

Holding her heart in her hands

Victoria Wyatt and her old heart had a reunion four weeks after her transplant.

It wasn’t a graphic sight: The heart was wrapped in a white paper towel and encased in a plastic bag. But it was indeed the organ that had pumped in her body for the first 29 years of her life.

In a clinic room at the Spectrum Health Richard DeVos Heart and Lung Transplant Program, Victoria pulled on gray, latex gloves and lifted the plastic bag.

She gazed thoughtfully as she turned the heart back and forth, hefting it to feel its weight.

“It’s huge,” she said quietly. “It’s so heavy.”

Her husband, Jeff, took a picture of Victoria, smiling with her heart in her hands.

The heart, though enlarged and thickened by genetic heart disease, had not yet outlived its usefulness.

Victoria made arrangements to preserve the organ, creating a plastinated version that will help physicians learn about her heart condition, hypertrophic cardiomyopathy, a genetic heart disease that causes abnormal thickening of the heart muscle.

“It’s going to be exciting to see my heart go toward something good and help other people understand this disease,” she said. “I can say at least it’s doing something productive in its second incarnation.”

Victoria, a 30-year-old woman from Grosse Pointe, Michigan, sees helping others as part of her mission after a transplant gave her a second chance at life.

A surprising diagnosis

When Victoria learned she had heart disease at age 14, the diagnosis interrupted her busy life as a high school freshman.

She felt unusually fatigued so her mom took her to the pediatrician’s office for a checkup. The doctor heard a heart murmur and referred her to a pediatric cardiologist.

After a day of tests, the specialist told Victoria and her mom the diagnosis: hypertrophic cardiomyopathy.

The condition is best known in the general public as a cause of sudden, tragic deaths of young athletes, who suffer cardiac arrests.

But in reality it affects people of almost any age, causing a range of symptoms including shortness of breath, lightheadedness, heart pounding, or passing out. People may not even realize they have the condition because there may be no symptoms at first.

But it can cause a range of symptoms—and often people don’t realize they have the condition.

“I was actually pretty lucky,” Victoria said. “I know from talking to other people that a lot of them don’t get diagnosed that quickly.”

But as a young teen, she didn’t feel lucky. The doctor told her she had to quit the swim team.

“I loved swimming,” she said. “It was right in the middle of the season.”

Through her teens, she became winded easily during physical activities. But she continued practicing martial arts.

“I probably pushed myself a lot further than the doctors would have liked,” she admitted.

In her early 20s, she often felt out of breath. But she chalked it up to a lack of exercise and long days on the job.

At 25, she saw a local cardiologist, who ran a series of tests. The results shocked Victoria.

“He said it’s gotten so much worse. He said I was in heart failure,” she said.

She began taking several medications. And she underwent septal myectomy—surgery to remove excess muscle from the septum of the heart. She felt better afterward—but the improvement lasted only about a month.

That’s when Victoria turned to the Spectrum Health Hypertrophic Cardiomyopathy Program, one of two Centers of Excellence in Michigan recognized by the Hypertrophic Cardiomyopathy Association.

The program provides a comprehensive approach to diagnosis and treatment. Patients receive care from a multidisciplinary team that includes cardiologists, surgeons, nurses and genetic specialists.

“It’s the most common type of genetic heart disease. But it’s uncommon enough that they recognize it is best taken care of at a place where we see a large number of cases,” said Victoria’s cardiologist, David Fermin, MD.

Tests showed Victoria suffered from a “burned-out form of hypertrophic cardiomyopathy,” Dr. Fermin said.

“That meant her heart was basically just turning into a big scar. It’s called fibrosis—the heart muscle becomes stiffer and stiffer as it is replaced by fibrous tissue.”

Without additional medication or surgery available to reverse her condition, a heart transplant became her only option.

Waiting for a new heart

At that point, Victoria had become so weakened she struggled to walk across a room and always needed a cane for support.

In October 2017, Victoria began to receive an intravenous drug, milrinone, which relaxes blood vessels to help them dilate. It provides short-term help for people with life-threatening heart failure.

For the next two years, Victoria remained hooked up to the IV medication, carrying it in a fanny pack everywhere she went.

“It was remarkable how much of a difference it made,” she said. “I was able to keep working for about another year. I was able to leave the house and do things on my own.”

However, the effects of the IV milrinone gradually diminished, and it became more difficult to remain active and attain a healthy weight, which is one criteria for heart transplant listing.

She underwent bariatric surgery. Because the procedure is not commonly an option for end-stage heart failure patients due to the risk, this required significant coordination between Victoria’s Spectrum Health cardiology and bariatric surgery teams. She succeeded in losing enough weight to be listed for a transplant in July 2019.

In August, with her heart failure progressing, she stayed in a room at Spectrum Health Fred and Lena Meijer Heart Center. She remained there 59 days, waiting and wondering if a donor heart would become available in time.

One October night, she received a call from a transplant coordinator saying: “We have a heart.”

“I couldn’t breathe,” Victoria said. “You’re almost thinking this is never going to happen. It was surreal to get that call.”

In the operating room awaiting surgery, Victoria thought about two close friends who died from complications after transplants.

“They were such strong people who fought this so long,” she said. “I have to do as much living as I can in memory of them.”

She recalls waking up the next day and recognizing that a new heart beat in her chest. She no longer felt the heart palpitations that had been with her constantly.

“Even now I have to think about it—that this is a different heart,” she said. “It’s so much more compliant. It does what it’s supposed to do. My old heart would act up so much, it was always in the front of my mind.”

Preserving the old heart

To raise awareness about the disease, Victoria became active in the Hypertrophic Cardiomyopathy Association, serving as a moderator for its Facebook group. She talks with newly diagnosed patients about her experience with the disease.

One thing she stresses: Not everyone will have such a severe form of the disease that they require a transplant.

“They say 1 in 200 to 300 people are genetic carriers for the disease,” she said. “Probably out of all those people who have it, only 3-5% need a transplant.”

Dr. Fermin adds: “Some people have the misconception that it only happens to young athletes, but it can affect anybody, at any age. That’s why it’s very important for people to know their family history.”

Victoria also decided to follow the example of other patients, and have her heart preserved so it could be used to educate others.

“I’ve seen other specimens already,” she said. “You just see how this one disease looks different from person to person. No two patients will ever be exactly the same.”

Plastination of her heart will take a year and involve efforts by specialists in Texas and Ohio. A cardiac pathologist will first section the heart. Then it will be dehydrated and rehydrated with plastic.

“That’s exciting for me—to actually see the heart and the scarring and the thickness,” she said.

Dr. Fermin saw plastinated hearts at a conference recently and agreed they are valuable teaching tools.

“There’s no good replacement for actually seeing what a real heart with this disease looks like,” he said.

Getting her life back

As she recovers from surgery, Victoria and her husband, Jeff, look ahead to the opportunities that come with her new heart—and new health.

The couple has been together 11 years, and Jeff watched as heart failure took its toll on his independent, strong-willed wife.

“It’s exciting seeing her be able to get her life back,” he said. “Her being sick and not able to do things became kind of normal for us. That normal is going to be changing, which we are excited about.”

Victoria’s mission to help others with hypertrophic cardiomyopathy does not surprise him.

“That’s a staple of who she is,” he said. “She likes thinking about other people first.”

Victoria feels a keen sense of gratitude and responsibility for the gift of organ donation.

“Because I got a heart, somebody else was not able to get a heart and is still waiting,” she said.

“And to think of a family whose loved one has passed away being asked, ‘Do you want to donate those organs?’ I can’t imagine what that would be like. For them to say yes, that’s a huge deal.”

Holding her heart in her hands published first on https://nootropicspowdersupplier.tumblr.com/

0 notes

michellelinkous · 5 years