Tag Archives for Lupus

Medical Team

Second to your A-Team, your medical team are the most important people to you. You spend endless hours in and out of their offices, they see you in your most vulnerable hour, and you have to be able to trust that if you are unable to make a medical decision that they know what you want and how you want. So, I can not stress enough how vitally important it is that you have a good relationship with ALL of your physicians. 

Living in the DC Metro Area, I was spoiled. I had a medical team that were not only cutting edge but that picked up the phone and contacted one another in an emergency! You heard that right, they picked up that phone and made the connection. Unfortunately, I haven’t always been so lucky. As many of you know we are lucky to get an appointment that we do not have to wait 6 months for. Not to mention the endless wait times, once back the rushed appointments, and let us not forget the sometimes not so pleasant staff. Often times we go into these practices and know more about the disease than the specialist does. 

So needless to say I am ready to meet  the possible new member of my team, tomorrow. I say possible because one thing I do NOT do is settle for less when it comes to my team. Most people would think I was crazy for what I am about to say, but my medical professionals are not just Drs. To me it is about going in and building a relationship with them. If I have to spend endless hours with you, your medical staff, and under your care, rest assured that I am going to cultivate and nurture that relationship. I am not the run of the mill patient. I do not walk in, get a prescription, and leave. My doctors/medical professionals share my life. (My favorite respiratory therapist from my local hospital just retired… Wouldn’t you know we stay in regular contact.) I know to most this sounds insane, or over the top but when you are in a hospital bed and can not breath or speak, you have no choice but to trust your medical team to make decisions and know who you are. 

So I am looking forward to tomorrow. I am staying positive this will be a good fit. I already have my questions for him ready. Let’s pick his brain! 🙂
Cheers to finding the right fit!

Undefeated Diva

Brittle Asthma

There is Asthma and then there is:

Defined:

brittle asthma

A rare form of ASTHMA affecting mainly females and featuring sudden, very severe, often life-threatening attacks. Those affected have a mild degree of immune deficiency, with poorly-controlled asthma in spite of substantial doses of inhaled steroids and wide diurnal swings in their peak flow meter readings. The term is also applied to people whose asthma is normally well controlled but who, nevertheless, suffer occasional sudden severe attacks. Brittle Asthma. (n.d.) Collins Dictionary of Medicine. (2004, 2005). Retrieved June 13 2016 from http://medical-dictionary.thefreedictionary.com/brittle+asthma 

Asthma Disease

 

There is nothing more we take for granted than breathing. Hell even I take it for granted, that is until I can’t. Let me paint you a picture, a very real picture. It often starts with coughing or some form of chest tightness. Unfortunately, it never stays that simple for long. Within minutes the chest tightness goes from 0-100. It was a normal Thursday, you know get up, get ready, get little man ready, rush out the door, get little man to day care… But this Thursday was different. 4:28am brought with it a dream that I was drowning, shortly after that I was up gasping for air and attached to my home nebulizer. Crazy how the body works.

It never ceases to amaze me the strength within.  Instead of going to work I found myself in the parking lot of the ER. I thought it would be an easy visit and for all outsiders it was. Simply because I refused to be admitted, yes you have to stick up for what you want or need. Unfortunately, I have not bounced back as quickly as I had hoped. Four day’s later and I am still struggling. Something as simple as putting my clothes on has me breathing like a 90 year old chain smoker. Getting in my car this morning had me sitting and utilizing my rescue inhaler. There is nothing like feeling like you are breathing through a straw. Ever try it?

Some day’s… Day’s like the last four have me mad… Mad at my body, mad about these diseases that take over. No matter how hard I fight, try being healthy, eating healthy, taking vitamins, attending my appointments, sometimes I feel like I lose anyway. Something as simple as not keeping up with my little guy shatters a piece of me. I will never stop fighting, but damn it if I don’t come close some day’s to just saying FUCK IT! I can’t tell you how many day’s I come so very close to staying in bed. 🙂 Some how I crawl out and push forward, but it’s a close call.

Keep fighting my friends… Keep getting out of bed… I am there with you!

XOXO,

Undefeated Diva.

World Lupus Day

May 10th is World Lupus Day! “There is no boundary to the impact of lupus. Lupus is a global health problem that affects people of all nationalities, races, ethnicities, genders and ages. Lupus can affect any part of the body in any way at any time, often with unpredictable and life-changing results. While lupus knows no boundaries, knowing all you can about lupus can help control its impact. (Worldlupusday.org)


Today I wear PUT PURPLE ON #POP to raise awareness! 
Shine bright always! 

Xoxo,

Undefeated Diva

Day’s Like Today

Being able to walk pain-free is a blessing. Being able to walk without showing the pain is a skill.

Kylie McPherson

 

The pain can be excruciating, mood altering, and downright unbearable. Day’s like today, I get it. I get how someone is pushed to the brink. I get how someone normally so sane and logical can be pushed far beyond their limits and be anything but. Day’s like today, there are only minutes. I count the day in minutes. I made it through another 30 minutes without going home or without giving up. At the end of the day I am proud of myself, but to get there is no easy feat.

Life has been an interesting ride as of late. Diagnosed with steroid induced diabetes a couple of weeks back, I have been fending off sugar drops and rises like the most seasoned tennis player. Add to this insomnia and pure exhaustion, I have a pretty good idea of what induced this onslaught of body pain. None of that makes it any easier. Opening my eyes this morning the pain I felt, felt as though I was in a car accident. The exhaustion I felt, felt as though I had taken some form of sedative. Neither of which actually happened. Like us chronic illness warriors always seem to do, I pulled myself together as much as humanly possible and off to work.

One that does not live with a chronic illness may not understand what it takes. To walk to the copier, to type an email, to even sit for more than a few moments. It is all excruciating. Better yet, to wear clothing that is not loose is a mission. Day’s like today, I am proud of my chronic illness sisters and brothers on a different level. Day’s like today take more skill and determination than normal days. Unfortunately day’s like today often outweigh the “normal”.

So my fellow sisters and brothers on days like today and every day I am with you. I stand strong for you. Above all I wish we were all together to hug and hold one another. Because let’s be honest on days like today what I really need is a hug.

 

XOXO,

Undefeated Diva…

Insomnia Funnies

I am pretty sure at this rate I will reach some form of hysteria by midweek…  I found myself laughing at the following pictures a little harder than I should have. 

   
 
I wonder if I would find them funny once I get a decent amount of sleep? Furthermore I am here to inform you my friends that penguins DO in fact have knees! Just in case you were all curious. Lol

Another night, another tortuous night of rapid fire thoughts that seem to never end. I believe I have not only reviewed my life as a whole, but have caught up on my research and revised my life plan ten times over. I’ve also recreated my bucket list at least five times. Who is with me out there? What have you done? Have you designed the next breakthrough in modern science? I swear I am much smarter between the hours of 1-3am than I am during “normal” working hours. 

On a not so funny note, due to what seems to be my new power hours my pain level and swelling are on the rise.  My brain and body are betraying themselves yet again. I am so sorry to those of my fellow brothers and sisters that deal with this on a much grander scale then I am. May the beauty of sleep find us all… And soon! 

Xoxo, UD

Here and Now

Never let the things you want, make you forget the things you have.

 

For a dreamer and a natural born planner the struggle is real. A never ending battle to focus on the here and now. How often do we stake claim on a goal for the foreseeable future and blow full steam ahead, but forget to “stop and smell the roses”? Lately, I have been so fixated on the future that I have not stopped to look at what is right in front of me, and above all be grateful for it. I found myself transfixed yesterday in a moment that was both invigorating and self-actualizing. It was the moment I realized, time waits for no one. This is not a new lesson but one that from time to time I fail to keep in the forefront of my mind. As I stood in a moment with my son, standing in the grass of our front lawn I realized just how much I focus on things for my future that I want to give or do. Although there is nothing wrong with wanting to create what I believe to be a better and brighter future, I do see a problem missing out on moments in the here and now.

So with that I took off twirling and throwing my little man. Running around on the lawn and eventually throwing us both in the grass, worn out and gasping for breath (who would think I am only 30). In one simple moment, that smiling face brought me back to the here and now. The here and now to be grateful for that small moment. The moment’s we as people with chronic illness only dream about when we are in a hospital bed or bedridden from our diseases. In that moment, my son reminded me to live. Not in any way shape or form am I saying that I am fixed from this thought process, but that moment, a moment shared between mother and son transcends through every aspect of my life. Stay focused Christina… Take a moment and taste your coffee, smile at the passing company, and above all remember that life is here and now, be grateful. Tomorrow is uncertain for all but especially those of us fighting battles. Hell, today is uncertain. What I know is as I went to sleep staring at my son’s face, I thanked him for the lesson. He will never know the true depth of what he teaches me regularly.

 

Happy Monday Morning!

 

XOXO,

Undefeated Grateful Me