I know Hair loss is a characteristic of Lupus BUT I truly do not know how I have hair on my head! The clumps are getting worse and my bald spot is back.
I am in search for new remedies, any suggestions? What do you guys do?
Maybe bald is the way to go!
Another night spent awake. If I was honest with myself, I would say it’s been going on for weeks. Waking up in the middle of the night/wee hours of the morning. I sleep maybe an hour or two straight and then wake. It has become utterly frustrating . I’d like to pinpoint why this round insomnia is happening, but I seem to be coming up short. Some nights it’s pain related, other nights my thoughts get the best of me. Then there are those nights where there is nothing… no thoughts, no excessive pain… nothing at all. I just lye here, awake.
Most wouldn’t understand. I’ve tried everything from bedtime routines and baths before bed to medicines and teas. My Sour Sop works the best, but it’s still not full proof.
So I am here, hoping my fellow insomniacs are doing well!
Like so many people around the world, I have been glued to the Olympics as much as I can. I am a very proud Puerto Rican woman by nature, but I am elated to share…
The first Gold Medal EVER for Puerto Rico 🇵🇷 was achieved by Monica Puig a 22 year old, Puerto Rican Woman!!!
Screaming from the rafters!
The life of a Asthma Sufferer… Sometimes I joke that “I’m allergic to the air”, but in all honesty leaving the house sometimes poses a serious threat to my lungs. Case in point today… Although I was dealing with small allergies they were nothing I couldn’t handle with an over the counter allergy pill. This morning I walked outside and felt as though My lungs were assaulted. I felt as though I was suffocating and since I have been reaping the consequences, for simply walking outside of my house. Most of the year and even more so in the summer months the EPA Website and myself are best friends. I check air quality prior to walking out of the front door.
My doctor recently encouraged me to move back to another climate. He looked at me and said these Asthma attacks will kill you if they continue like this. No one and I mean no one wants to hear that but I without question appreciated his honesty. Sometimes I take for granted that I have made it this far. I rarely allow my illnesses to keep me down for long. Sometimes I forget just how serious my illnesses can be. I fight every day and I think at times I become almost desensitized to the very possiblity of a permanent outcome. Sometimes I forget that my illnesses are not just debilitating but can be deadly…
So today was a good reminder, and I took it easy. Living off of my nebulizers and put myself back on a dose of steroids (Yes this is a routine dose discussed with my medical team that prevents a crisis from happening we start on a pre discussed dose of steroids).
*Not recommended to be done without discussion with your medical team*
I’ll never let it keep me down for long but today and every day is a good reminder of life and the blessings it holds. To my fellow chronic illness suffers that have lung involvement I am with you… May we breathe better sooner rather than later!
Undefeated Brittle Asthmatic Me!
Me: “I am Exhausted”
Them: “Get some sleep. Rest. Oh just take a nap.”
If it were only that simple. There is tired and then there is the exhaustion that many of us with a Chronic Illness feel. It is the nausea inducing, body shaking, fever generating, limb weakness type of exhaustion. For me, my exhaustion can sometimes include breathing difficulties and neurological side effects such as dropping things, tripping (body imbalance), and fogginess. It is a concept that is difficult to grasp if one has not experienced it.
Sometimes resting or sleeping do infact help but more often than not it only places a bandaid on the situation. It is like plugging in your cellphone that is at 2% for 10 minutes to get just enough of a charge to make a call. You rest/sleep for 8 hours… and sometimes you have just enough energy to do just one activity. You save up all of your energy for one thing. We are not talking about saving up your energy for one big trip to Disney, no. I am talking about you sleep 8 hours to do something like clean the bathrooms or cook dinner. This is of course if you can get to sleep, as many of us are experiencing side effects from medications or in such pain we can not get comfortable.
I wish I was joking. I wish that everything I was saying was a harsh dramatized dream, but it is not.The last time I was experiencing this level of exhaustion I was being newly diagnosed. I have to admit that I have been very lucky over the years as I have been able to kind of gage when I was exerting myself and I would plan appropriately. I worked full-time, went to school full-time, and maintained some level of friendships. Now that I think about it, I am not sure how I did it… but I did. Now a days I can’t seem to make it until 3pm without needing to nap for just a moment. When I was working in an office, many of times I would take my lunch break and nap in my car.
I have been looking up some different shakes and teas to help with my symptoms. Think I will make one in the morning and see if it helps even a little. I’ll share the process! Stay strong my fellow spoonies. I am with you… Have a good night!
Good Morning and Happy 2AM to you!
Hold tight for your regularly scheduled programming of prednisone side effects. Todays feature comes with insomnia inducing, night or early morning sweats, severe heart burn, the shakes, and elevated heart rates.
I am just stopping by to say hello to my other Chronic Illness Warriors out there going through their share.
After nearly two weeks, I am still confined to my nebulizer. Outside of being admitted to the hospital there is nothing more that the doctors or I could do to get me breathing 100%. These are moments… The silent moments… that the ehaustion and slight defeat kick in. I will be the warrior I am and will push through but in moments like right now, in the darkness of my room, sitting on the floor connected to my nebulizer, there is that moment of exhaustion that sets in. A moment that makes you say “come on, really”. I have attempted everything to keep myself out of the hospital, because let’s face it… The hospital is the last damn place I want to be.
So to positive thoughts and lungs that work!
Hope you are all having a great night!!!
Undefeated Still Breathing Me!
As I sit and review my week, I am astounded by it all. So much has happened this week both personally and in the world. I do not care to open up a can of worms, so I will start and end with this… We, as people are all in this together. I am unsure where or when, but somewhere along the way we have lost sight of that. This weekend I sat and looked at the world around me and was saddened by the anger, hostility, and all around carelessness out there. Walking by people in need, not stopping to acknowledge a greeting. Look up from your phones people, stop and look around you. Say hello to your fellow man.
Is it really so hard to be nice?
When did we as a society lose grip with the world around us? When did we lose compassion for our fellow man and neighbor?
Never the less it was a fresh reminder to myself that, WE… We the people are all on this beautiful planet together, why not make it great? I hope I succeed in instilling this in my son, each and every day!
My body is angry… Laying in bed (Yes I realize it is 6:55PM EST) and I feel like I just got my ass handed to me. You know Lupus is part of the culprit when you barely get in the door from driving home and can barely manage to get in the shower. Hell if I could actually bathe myself. So I SAT. I waited a couple of minutes and mustered enough energy to wash and get out. Now I am trying to muster the energy to get dressed. This of course all while still not executing breathing appropriately from my last asthma attack and the shakes.
You may wonder how I have the energy to write. Well, my talk to text is my best friend. Plus, I want any of my fellow chronic illness warriors out there that may be getting your ass handed to you today… I’m there with you and WE’VE got this!!!!
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!