Your Word

You may think that you aren’t doing harm when you go against your word. You are so wrong!!!

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This is #freegame for today and it is not limited to anyone or anything.

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As Spoonies we don’t have control over how we feel as we plan. As a result, sometimes we have to change the plan.

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That’s quite alright when you have been open with family and friends about the unpredictability of your illness. You have then fostered an environment of understanding.

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It can still be hard to adjust to and accept by both parties, but your openness and honesty diminishes the opportunity of mistrust.

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Be careful that you keep your word and if you have to change your mind or break your word, you have already done what you can to prohibit mistrust thus ensuring healthy relationships.

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I love you all with the love of Jesus! May your tomorrow’s be better than your yesterday’s!!! Love, Angel 👼🏽

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#sick #lupus #lupusflare #lupusawareness #lupuswarrior #lupusfighter #lupusadvocate #spoonie #spoonielife #spooniesupport #spoonies #spooniefamily #spoonielove #spooniesisterhood #spooniecommunity #fibromyalgia #fibromyalgiaawareness #potssyndrome #autoimmunedisease #chronicillness #chronicpain #angelslupusjourney #chronicfatiguesyndrome #chronicfatigue #chronicpainwarrior #chronicfatiguesyndromeawareness #transparency

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A Spoonie’s New Year Reality Check

As a new year approaches, people all around began to make resolutions and declare they will be a new and improved them. For some reason some seem to believe at the strike of midnight, they will miraculously be better inside and out. They proclaim to be leaving everything in the old year and starting over in the new year.

Although this sounds great, reality says you are the same person at 11:59pm on December 31st that you will be at 12:00am on January 1st. You will still have the same bills, job, family, drama, sickness , etc. you had a minute before midnight and although you are in a new year and decade, truth be told you didn’t change nor did your circumstances in that minute.

We battled these chronic illnesses yesterday and we will still be battling them tomorrow. We set ourselves up for failure when we believe that the clock, the time, the date, will cure our illnesses. We do a disservice to ourselves by expending all of our spoons thinking we will be granted millions just because it’s a new year.

Don’t get me wrong, I believe it is important to celebrate the victory of making it to a new year and in this case a new decade. We all should be thankful and strive to be a better us daily and the new year symbolizes a new opportunity to reevaluate ourselves and strive to get it right this time.

Reality is, no at midnight your illness did not disappear, but you have another opportunity to view your illness differently . You have an opportunity to self reflect and find ways that you can improve your health. Maybe you need to eat differently, get more rest, take your medications on the right schedule, change physicians in order to be heard, be seen by the Doctor more often, take breaks, be more proactive, etc. There is definitely something you can do to better you.

No, we don’t need to name it a “New Year’s Resolution.” It doesn’t take a new year to be a new you. It doesn’t take a new year to prompt you to put you first and take care of your needs. It doesn’t take a new year for you to make the proper changes in your life that will enhance your quality of life.

The “New Year,” is a great motivational kick start, but you truly need to look in the mirror daily and figure out what you can do to help yourself.

I looked in the mirror this morning and realized my eyes were super dark underneath, my malar rash was really red, my posture was poor. Yes, we are in a new year, but truth be told, I looked worse this morning then I did last year. After looking at myself I realized I had a new opportunity to try to improve what I see and felt. I need to rest more because my lack of sleep is causing the dark bags. I need to make sure I take my meds on time because clearly I’m flaring by looking at my rash. I had to take the initiative this morning to contact my doctor to try to get ahead of this flare. I had to do some things and still have to do some things to help myself.

The New Year had nothing to do with my self care today because this is something I should be doing daily anyway.

I’m thankful for the New Year and the motivation to be a better me; however, I encourage you to not just make these changes because it’s a new year, but continue for the next 364 days to look in the mirror daily and see how you can better yourself and enhance your quality of life.

Be a new you daily; not just because it’s a new year!!!

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The Holiday Aftermath

So Christmas has come and gone and now you have to deal with the aftermath of the celebrations. The Aftermath of being the host and having to clean up after all your guest leave; the Aftermath of everyone opening their gifts and wrapping paper everywhere; the Aftermath of having all your new things all over and your choices are to put them away or make them presentable under the tree until you are ready to pull the tree down. You see, as beautiful as the days were, there is still aftermath.

For Spoonies the aftermath can be drastic and for me it has been. I know you don’t quite understand because I looked to be doing well. I was dressed nicely. My hair was maintained. My makeup was applied precisely. I was well put together. I seemed to enjoy myself and smiled the whole time.

All of this is true; however, It took 5 spoons to get dressed because I was trying to look great for the holiday. It took extra time to make sure my hair was just right. It took 3 spoons to even apply the makeup and then extra time for the precision. I looked great and spent 3 more spoons mingling and smiling. I truly did enjoy my family, but I only started with 12 spoons and I had expended them all. I was now using the reserve just to make it home.

I know you didn’t know and that’s quite alright. I didn’t want you to know. The celebration wasn’t about me, my health, my lack of spoons or my consequences. I knew going in the risk and I chose to take it because I too desired to be around my loved ones to celebrate Christmas. There was nothing you could do for me so there was no need to point anything out.

Some of you picked up on it and tried your best to help. You said, “Angel, your right slow. Let’s get you food and prop your feet up!” I didn’t have to say a word, but your observations and calm reaction was soothing. I didn’t feel embarrassed because of my illness or that I was ruining the celebration. You handled me with care and I appreciate it.

I still came home and made a Youtube Christmas video because I’m a woman of my word, but I must be honest and tell you that was done off of adrenaline.

As soon as the adrenaline left, the aftermath hit me like a ton of bricks. Here it is the night of Christmas and the day after and I can’t seem to get up. My mobility it altered. My energy is depleted as my 12 spoons were not replenished. I had set aside this day to rest and haven’t made it out of the bed and my room once. I’m still tired and no amount of sleep can make this better. No matter how much my legs are elevated, the swelling just won’t go down. Yes, I’ve slept and laid still, but this migraine won’t cease nor this joint pain. The aftermath has truly knocked me out for the count.

The thing is, I’m so grateful to be alive to see another Christmas that I look at the aftermath as just a part of the course. I regret nothing and would do it all again.

If you didn’t see me the day after or look to hear from me, you would never know what I am dealing with. That was the purpose and although that part was successful, the aftermath has been even more successful in taking me out.

Again, don’t pity me. I am just sharing so you have a clearer understanding of me, spoonies, the holidays and the aftermath. I warned you before hand and obviously some of you didn’t bother to read it, but some of you did and I truly appreciate your efforts.

The holidays were great and you made them greater!!!!

Reality is, if you haven’t noticed, because I’m sick I score my days differently. You may feel like that wasn’t a good holiday, but for me seeing everyone around me happy was spoons well spent and was indeed a very Happy Holiday!

I hope you now have a better understanding and you can celebrate the victory of the holiday with me despite the aftermath!

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No portion of this article may be duplicated in writing or in any other recorded format without permission.

Holidays for Spoonies

How easy it is to assume everyone is excited about the holidays?! It’s time to spend with loved ones celebrating our beliefs. For most, it’s time away from our jobs so we are able to do what we please. For some, it’s time to take vacations and travel. It’s time to eat the foods we have been waiting for all year to eat. It’s a time for many things. You would think it’s safe to assume everyone is happy about the holidays.

The truth is, a lot of people aren’t excited. Maybe they lost a loved one and are grieving. Maybe they don’t have family around to celebrate with. The list can go on. To many, holidays are just another day on the calendar.

I know it’s hard to believe what I’m saying, but let me share something even deeper.

For those living with chronic illnesses, the holidays can be hard, discouraging, too much and can really put us in sour moods. Why??? Let me list some things.

1. Being around people means being around germs.

2. You may not feel up to participating, but you feel obligated so you press your way and deal with the consequences later.

3. Depending on your condition, the temperature wherever you are can be a true hindrance. It may be too hot or too cold.

4. Having a lot of people around, family or not, can cause major anxiety because you’re striving to be looked at as normal as possible and that’s more people who may see the truth.

5. You don’t want to have to leave early or lay down because that will cause attention to be on you.

6. Others don’t understand so you feel like you have to keep all emotions to yourself.

7. You were proactive and prepared, but things are still happening outside of your control.

8. You are more self aware than normal so you truly realize how different you are.

9. The festivities are still going on, but all you want is your bed yet you certainly aren’t going to part your lips.

I can go on and on!!!! The holidays can truly be a difficult time for those living with chronic illnesses.

Then there is the part where you are super excited about the holiday because it’s one more year you have lived to see the holiday! Oh what a blessing that is; however, when others around you aren’t as happy as you are, it can really dampen your mood.

I share all of this so you can be cognizant of your loved ones. Be helpful, understanding, patient and take the time to really love on them. Don’t put them on the spot in front of people, but make them feel comfortable and able to trust you with their concerns. Remember the reason for the season. There would be no CHRISTmas without CHRIST and he is love!

Now that I have helped you understand, be sure to spread Christ’s love and think about why people may be acting the way they are rather than assuming.

Holidays can be hard, but you have an opportunity to make them grand for your loved ones!

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No portion of this article may be duplicated in writing or in any other recorded format without permission.

Chronic Illness Is So Hard

Living with a chronic illness is one of the hardest things ever. You never know what the day will bring and you don’t have many (I don’t remember the last time) days without some type of ailment.

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Lupus, Fibromyalgia and POTS have changed my life. They determine my days, from if I can move to what I can do.

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You all see me all made up on the weekend, but what you don’t see is that in order for Lupus to allow me to get up, I had to spend the whole week in bed in preparation. My doctor appointments even exhaust me.

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Even on the weekend I am fighting hard and pushing to smile and go. The pain doesn’t stop because you have something to do or it’s a holiday. Bills don’t stop, right? Well, sickness doesn’t either. I just choose to smile and be thankful that I’m still alive!

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Today, I am struggling. I’m feeling worse, not better. I will see the doctor again tomorrow and have bloodwork done.

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Let me be clear though! You may see me in bed with a smile on my face today or tomorrow, but that does not mean I’m better. What it does mean is I am a Warrior Princess that never crumbles no matter what is thrown at her.

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I don’t want pity and you don’t have to tell me you are sorry I am going through this. What I need from you is to keep me lifted in prayer whether I’m smiling or not, never assume anything, ask me how I’m feeling vs telling me I look better or worse, don’t tell me what I need to be doing because it gets overwhelming when it comes from all over, be patient and always speak in love! Those things right there will make my journey so much easier and I thank you in advance!

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I love you all with the love of Jesus! May your tomorrow’s be better than your yesterday’s!!! Love, Angel 👼🏽

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#sick #lupus #lupusflare #lupusawareness #lupuswarrior #lupusfighter #lupusadvocate #spoonie #spoonielife #spooniesupport #spoonies #spooniefamily #spoonielove #spooniesisterhood #spooniecommunity #fibromyalgia #fibromyalgiaawareness #potssyndrome #autoimmunedisease #chronicillness #chronicpain #angelslupusjourney #chronicfatiguesyndrome #chronicfatigue #chronicpainwarrior #chronicfatiguesyndromeawareness #transparency

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Time Heals All Wounds

I have heard this saying all of my life and have found myself telling myself this in order to get through many things. To many, this saying is true; however, in my now older opinion this saying can’t be further from the truth.

It is my opinion that your wounds will never be fully healed. Life truly makes sure of that. Sometimes, life takes every opportunity to throw salt in the wound opening it back up.

Don’t get me wrong, time does help to diminish the sting of the wound, but the scar will always remain as a reminder. The wound might even still be tender and sore because it isn’t completely healed on the inside. We will always be reminded of our wounds and although they may sting less, they still cause some pain and discomfort. How could we ever forget?!

We are human and we can’t always control what our minds go back to. There are things that trigger those memories. It could be a date, a smell, something someone says, looking at tv, etc. Again, how could we ever forget?!

This has nothing to do with forgiveness. This is solely about the fact that we will never forget. No matter how we try to cover it up or camouflage it, our wounds and scars will always be there. We can never forget.

While you are waiting for time to heal your wounds, lick them for as long as you like!!!! Take as much time as you need for the sting to diminish. It will diminish over time, but it will never fully go away! The wounds and scars are a part of you and your lessons learned make you the person you are today!

I must say you are an amazing person, so I thank God for your healing wounds!!! I’m thankful that they aren’t open wounds anymore and you are in your healing process. They may never go away and you may always have a scar, but now you have a story to tell to help someone else who is going through. Thank you for being vulnerable enough to share your wounds and scars. Time might not heal your wounds, but your story just might heal some broken hearts and save some souls. To God be all glory!

I thank God for using my wounds and scars to help others! Time is diminishing the sting, but the memory has empowered and enabled me to help people who have just been wounded as well as those trying to cope with their scars.

Time may not heal all wounds, but it sure has matured me into the woman I am today. I now know how to handle my wounds so I can pass my experiences on!!!

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Identity Crisis

When first diagnosed with Lupus and many other chronic illness, we feel that the diagnosis strips us of our identity. We are no longer the same. It doesn’t matter that you are physically the same person today as you were yesterday prior to the diagnosis. The truth of the matter is, those words, “You have …” changes your entire life.

You begin to question what this diagnosis really means. You have now been handed something that will never go away and you have to learn to live with it. You no longer have a name; instead you are patient 1589523. You are recognized by your patient record number. When people describe you to someone else, the description is no longer 5’8, 188lbs, brown hair and blue eyes. Your description is now that girl/guy that has that disease. You aren’t able to do a lot of the things you used to do, so you have no idea what you even like to do that is feasible.

What do I like? Wait, who am I? What happened to me? This is not who I am and I don’t have any idea how to go back and be who I once was.

I do know that because I have no idea who I truly am, I am now down and depressed. My life will never be the same and I’m not sure if I will ever be anything remotely close to who I used to be.

Please allow me to help you with this as 21 years ago I went through the transition of realizing who I once was is not who I currently am.

Let me start by sharing with you an important tidbit to keep in the forefront of your mind as you embark on the journey of finding yourself. First and foremost, your feelings of disbelief, confusion, despair, etc. are REAL and VALID. You are entitled to these feelings, so never allow anyone to tell you otherwise.

The question still stands though; Who am I now? Since I’m not who I used to be, how do I find myself again?

You must first truly understand, reality is your old self is gone. You will never be who you once were. Stop trying to be that person. You are only doing yourself an injustice and blocking your blessing of newness.

What am I talking about? I’m glad you asked!!!

You now have the opportunity to be a new and improved you. Yes, even with the struggles of Lupus. You just have to identify your new normal. This is not a negative thing, so change your mindset and perspective so you can prosper. Find some things you are able to do now and capitalize on them. Make a conscious decision to find something positive to focus on daily in the midst of the pain, confusion and negative feelings you may be experiencing.

Let’s be real here!!!! This doesn’t just happen over night and I don’t know one person who has truly mastered finding their new normal. As they navigate through life, they still have setbacks, breakdowns, etc. We are all human and we all are a work in progress, but we WILL identify who we are with our illnesses and succeed in life.

You don’t see it?! Well let me show you…

You see the old you may have been strong, but the new you is stronger. You face things daily others could never handle. You are resilient no matter how you may internally feel because you haven’t given up when so many would if they were in your shoes! You are already well on your way to realizing who you are now. The old you may have stood strong on your beliefs closing yourself off because you didn’t need any help, but the new you is open to research and finding what’s best for you. Your openness to finding what works best for you, will catapult you into a bright future. This future may be better than you could ever imagine.

You will succeed as the new you! Let me repeat that, YOU WILL SUCCEED AS THE NEW YOU!!!

I implore you to redefine who you believe yourself to be and walk in the great, powerful, mighty warrior you are today!!!!

You may have lost the old you, but you found a new you that is SIMPLY AMAZING!!!! The new you can accomplish anything!!! Your determination alone, will help you overcome the worst of times!

You know exactly who you are!!! Identity Crisis Aborted!!!! All you have to do is embrace it and walk into your New Identity and watch how your life changes for the better!!!!

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