Spoonful of Spoonie Encouragment

Mornings for those with a chronic illness are a struggle beyond words. Waking up and willing our bodies to function is a fight. Here is a spoonful of encouragement for spoonie warriors. Happy Monday, brave friend!

You have victoriously made it out of bed this morning. The symptoms and pain are already overwhelming, but you’ve got this. You only need to take today one minute at a time. You have all the strength you need, even though it might not seem that way. Anxiety and depression attempt to dictate your day. Take a breath. Take a break.  Get some rest. Keep fighting to make today the best day possible.

You have been chosen to walk this path. It is one filled with heartbreak, disappointment, and setbacks. Walking the path of someone who is chronically ill is a challenge to say the very least. Being sick has most likely disrupted your flawless rhythm with life. It has stopped you dead in your tracks. Your illness has tried to toss your dreams out the window.

Though this path is difficult, I assure you there is a lot of beauty to be discovered. Sure life is not what it used to be, but the song you sing is just as beautiful. There is hope, joy, love, laughter, and life to be found on this path. You will be able to recreate your wonderful dreams. You are still you, despite your illness. You are an amazing and beautiful person with a flawless story and a huge purpose.

    There will be days that you become overwhelmed and feel completely alone. Your feelings are understandable, however, I promise you, you do not walk alone on this path. There are people who care about you, people who understand how difficult the journey is, and people who want to support you.

I am proud of all you have accomplished. I know you will thrive today. This week will be lovely simply because it is the only choice. While you don’t need to be positive all the time you need to take baby steps forward. You are doing amazing. Raise your coffee (or tea) to a great week warrior!

Advertisements

Friday Encouragment

Happy Friday, friend! I am beaming with joy because you have made it another week. Despite the difficult moments, you have thrived. Moving forward each moment you have claimed victory. You have demonstrated grace and courage this past week.

As you pour your cup of coffee reflect on the moments of joy this past week. Remember the victories of this week. You have made progress. Your worth is not measured by your to-do list or other people’s expectations. You are cherished just because there is breath in your lungs. Treasured, simply because of the unique person you are.

Allowing yourself to rest is indeed moving forward. Your body works hard. Rest is not wasting time. Rather it is preparing you for whatever task you do next weather that is getting some water or going out to visit a friend.

Embrace this chilly and lovely day with an upbeat attitude.  Remain firm in hope. Laugh as much as possible. Enjoy the small blessings. Let thankfulness consume your precious heart. Sending spoons and hugs.

I am helping lead an online Bible Study. We are reading the book Living So That by Wendy Blight. This afternoon I am preparing for an online event later this week. One of the topics spoken about is resting at Jesus’ feet. Sitting silently; just being with Him.”Time spent in silence seeking God’s will is not time wasted, but time spent wisely.” I know it’s hard to get time away. To get a couple of quiet moments. To still our hearts. To actively listen. A few seconds to a few minutes of silence make a difference.  Of course, this takes me back to my journey to Taize, nearly five summers ago.

Taize is a Christian community in France were thousands of teens and young adults gather to draw closer to God. The silence was an essential part of worship there. Learning the simplicity of just being with the Lord.

img_0719.jpg

I begged God to give me a map for my future, as I sat on a bridge in silence for an hour. That hour changed my walk with Christ allowing me to grow closer than I knew possible.

Now I am certain I never would have understood all He had in store for me.  I wouldn’t have understood that I would minister to those who are chronically ill- I didn’t even know what Lupus was. I wouldn’t have understood that I was called to an online mission field, not Brazil or Africa. I wouldn’t have understood that I needed to slow down or the weight of this quote, “Sometimes we need to care for the 5,000 before ourselves, but sometimes we need to care for ourselves before the 5,000.”  There is still so much I don’t understand, but I trust in God to guide my every breath.

 

 

Good Night Encouragement

Today was far from perfect, never the less it was a blessing. You did your best which is all anyone can expect. Every day you are faced with many obstacles, which you gracefully overcome with determination. You might feel like you are dragging your body through the day like you are going to collapse from all the pain. Yet every day you accomplish so much.  You are doing an amazing job! You might not be where you want to be and that is okay, you will get there in time. You are doing a fantastic job where you are in life right now. Don’t be too hard on yourself. Be grateful and proud of the small accomplishments.

Be compassionate to yourself tonight. Take a few moments to reflect on all your amazing accomplishments and blessings. Do something nice to recover from this long day, take some me time. You need to be nice to yourself it not only benefits you but also those around you.

You are an inspiration and a blessing to many people my friend. Your friendship is priceless and very precious. Everyone you encounter is blessed by you. Bless by your smile or your kind words. The strength you display is yet another blessing to others. Inspiring them to be strong in the trials they face. You bless many people daily.

I pray that the Lord would be with you this evening as you unwind and prepare for bed. I pray that you would fall asleep quickly, stay asleep through the night, dream sweetly, and wake up with a lot of spoons.

Encouragement for You

 

Blessings are all around you though at times they might be hard to see. The fact that you woke up this beautiful morning is a blessing. You are a fighter with a sparkling and breathtaking personality. If you are able to walk on your own that is truly a blessing, but if you cannot and you have a walking device that is a blessing as well. Your senses are a blessing as well as all the amazing things your body accomplishes without you taking notice. Those that you hold dear to your heart are blessings so is every moment that you spend with them.

Not only have you received a great abundance of blessings but you have blessed other without even knowing it. You have been a blessing by welcoming a new person to your group of friends or your church. You have been a blessing by reaching out to a friend who was lonely. You were a blessing simply by being present and listening while someone was having a difficult time. Your life story and the story of how you have battled you illness has inspired many. It has given people hope, strength, courage, and peace. Many more people will be inspired by your story and blessed by your compassion. You have impacted more people than you are aware of, you matter to countless people more than you know.
Reflect on all the priceless blessings in your life and encourage someone in your life.

She is the Clay

Tears have made her face moist

She’s longing to hear your voice

Seeking guidance to make a choice

She’s waiting day after day

Knows you are the potter and she is the clay

Things will fall into place in your time

Not alone in this climb

You’ll get her out of this bind

Let her know you’re near

There’s nothing to fear

Make her path clear

proverbs3_5-6

Too tired for a good title

It is challenging as a chronic illness blogger to find that ideal balance. To be transparent with out being TMI. To share honestly without coming off as complaining or looking for sympathy. To share not only about the battle with Lupus but the journey of life. To offer support without being overly optimistic or coming off as being nosy. I know other spoonie bloggers must encounter some of these challenges.

Lately, I have posted a lot about Prednisone. This was not something I planed. I have posted about it because I know a lot of people are forced into the wind whorl of Prednisone confusion. I feel like I never fully adjust to Prednisone. Once I am close enough to adjusting the doctor says Lets Tapper.

Tapering is great. Really. I fully understand why coming off prednisone is positive. I understand the side effects. On the other hand I do not want to experience intense pain that cannot be put into words. Pain so deep and intense that I cannot breath properly, cannot lay down, and can barely sit. When that pain invaded I wanted to cry or scream but I could barely get enough air into my lungs to speak. I don’t want to become so weak that I cannot get out of bed. So weak I can barely walk. So dizzy I using the stairs alone or showering is a hazard. I have been sick for so long. Borderline critically ill three times in two years. I cannot bare the thought of going backwards with my health anymore.

Personally tapering to fast, even on high doses of Prednisone is not a good idea. I had expected to taper when I saw my doctor. I had my entire schedule figured out from the dosage to what to eat on which days. My plan was flawless, leaving plenty of time to adjust before school began. I had anticipated 10 mg taper. Well that was not on my Rheumy agenda. 20 mg taper. 6 weeks. It didn’t seem to bad at first. Then reality slapped me in the face there is not enough time. This taper is going to fast.

With determination I pushed as hard as possible to get on the lowest dose possible. I am still paying for it. I made it to 35 mg. I am hoping and praying that my body can regulate its self somewhat and quit throwing a tantrum over the next few weeks. Tapering more now would only do harm.

I am blessed that my doctor increased my methotrexate, sadly the increase was only by 2.5 mg. Methotrexate has made a positive impact on my health. I have seen good days because of it. It seems to take a while to kick in then wears off too quickly.

I have encountered a sticky mix of side effects and/or addition symptoms. I am either a hungry hungry hippo or have no appetite at all. The struggle with food still remains. Thus so does the struggle with weight and water retention.  I have begun losing my hair again. With the combination of medication, not having Benlysta, and my Lupus it was expected, I just didn’t know when it would start.

Without a doubt my pain has increased. I am thankful that it is bearable, it is not as bad as when I was in the hospital. My joints, back, chest, and stomach are acting up the most currently. The liver pain visits briefly. I also have difficulty breathing at times, not like asthma though. I think it is either POTS related or liver related. My sleeping schedule is like the merry mixer ride. Then there’s the lovely fatigue we all have. Most times it seems impossible to treat.

With the shift of medications I have had to once again break up with my to do list. Like most people with a chronic illness I hate resting and feel guilty for it, but I know it is something I need to do. I need to do what my body needs me to do in order to feel a little better and to prepare for next semester. It is all part of the fight to stay out of the hospital.

Today was a mild (I use the word mild lightly)  flare day. I woke up with no appetite at all. No big deal; I just grabbed an ensure. I went up the road this morning to have blood work done. My veins had a nice vacation from needles. I did not expect to be stuck with the needle half a dozen times (or more, I lost count). The same lady does my blood work monthly. She is sweet and familiar with my case sorta. Neither of us could figure out why my veins would not give blood. I know my body has trouble with blood flow but this was a first for me. Yes I have been stuck more then a dozen times in one sitting, but that usually isn’t completely my body’s fault. Those times have been linked to people who weren’t good at their job.

1471324_584066328353137_723000033_n

My abdomen was throwing a fit. Lots of pain, nausea, and dizziness… typical spoonie day. In addition my anxiety decided to drop by for a visit. Though I didn’t feel excellent I am blessed that I was strong enough, just barely, to attend a ladies dinner at my church. Sometimes getting out of the house and being around people is lovely. It can be a distraction. Hopefully tomorrow will be a better day.

Just a Drop of Encouragement

Having an optimistic outlook is wonderful. It will not cure anything, but it helps us cope with many things. Surround yourself with people who are uplifting. It is okay to not be optimistic every second of everyday. Allow yourself to feel other emotions. It is okay to be angry, to be overwhelmed, to be stressed, to be sad, to be confused, and to be negative. It is okay to scream and cry. It is okay to have a pity party. Though it is okay, even healthy, do not allow yourself to stay in that negative state of mind. Once you are done with the negativity, pick up your boxing gloves and be ready to fight. To fight for your health, your happiness… To fight for you. You are worth fighting for. Your life is beautiful. You are a warrior. You are a survivor.

The Lord will provide for you emotionally, physically, and spiritually. He will provide just enough at times, this way you can move forward. He meets your ever need. The Lord has blessed you greatly. He has blessed you beyond your understanding and knowledge. He will continue to pour out his blessings in your life, for all of your days. You are flawed and facing unfair struggles but you are so blessed. You have countless things to be grateful for. Let gratitude fill your heart and mind. Allow your heart to sing with thanksgiving.

Stomach Flares & Food Battles

56631647

I have struggled with eating, due to my stomach for years. I found out I have an allergy to dairy at nine years old. Adjusting to that was a challenge because I loved dairy, but I adjusted fairly well. Growing up I was always on the thin side. Not under weight, just thin, until I hit high school. It is hard to remember if my stomach issues began again Freshman or Sophomore year. My health declined in high school, it is difficult to recall which symptom began when.

I was never a big eater but I ate enough. Then I began having difficulty eating. I would live in the bathroom from eating. I could not pin point one group of food though. It was food in general. In the beginning the stomach flare ups were every few months. Then the flare ups got closer and closer together and the pain became more sever. Before Prednisone, the flare ups began to scare me a bit. I was under weight. I could not believe my eyes when I saw my own picture… I looked like a skeleton. I am a tall girl, 5’8” to be exact. If I was shorter weighing 100 pounds wouldn’t be so bad. I knew that losing weight was dangerous at that point. I did everything in my power to maintain my weight. I tried eating every few hours and included high calorie things in my diet. It was a battle to maintain my weight.  When I began my relationship with Prednisone, I continued losing weight. Now on 60 mg I gained a couple of pounds, mainly moon face.

2013-05-26 001 021

In the beginning I thought I had IBS. As time flowed by, I knew it wasn’t IBS. My symptoms got drastically worst last year. Going to the bathroom 30 times a day and having bloody stool. The Gastro I saw order the wrong tests and offered no insight. I felt hopeless with my abdominal issues. The intense pain and stomach flares continued. I knew there was something wrong. I never fit nicely into diagnostic criteria. If I had a penny every time I heard, “You are complicated,” You are different,” Well I’ve never seen a case like this before,” or “I have no idea,” I would be rich or at least have enough money to buy all my college text books. Being unique medically is frustrating. No one wants to be one in a million medically,  but with some of my stuff I am. I had previously seen a Gastro who I loved, however going back was not an option. He wanted to help me but the office did not have the equipment or advanced testing ability.

I was frustrated and irritated with Gastros. I coped the best I could with the flares. About six months ago I began having extreme abdominal swelling. It was not bloating. I  would get so swollen that I looked at least six months pregnant. This was a red flag. I was advised by several doctors to go back to Gastro. Reluctantly I did so. The doctor told me I have IBS, ran a breath test, and offered no treatment plan or advice. This was not the outcome I had hoped for.

A few days before getting admitted to the hospital I suspected a stomach flare up. When you feel a flare coming on you always hope and pray that your wrong and it was a false alarm. But sadly I know my body too well. When I suspect something 99% of the time I am right. Which is a blessing and a curse.

In the ER, the day I got admitted, sure enough a stomach flare hit and it hit hard. I am blessed that they admitted me. I don’t know how I would have coped with that stomach flare at home. Fluids intravenously are a life saver! They are truly under estimated. If you follow my blog or Chronically Hopeful on FB you know how the story goes, I got diagnosed in the hospital with IBD. Part of the reason for my ulcerative colitis is lack of blood flow to my intestines. Some blame this completed on Lupus. Me? I believe it is a lovely combination of Lupus and POTS.

The picture at the top of this post is exactly how I feel, “Look at all this food, I can’t eat.” I saw a  dietitian in the hospital. She was nice, but honestly not helpful. No one has been much help when it comes to my diet. They tell me everything I can’t eat but don’t give any suggestions of what to eat. Actually one of the doctors in the hospital told me that they weren’t considered about me eating, it wasn’t a priority. No offense but I think (especially with POTS) that eating is important.

There are a handful of foods that are my ‘safe’ foods. Eating is a challenge. I am not allowed to have fiber, whole grains, or dairy. I need to limit protein.  I get frustrated often when I need to eat, because of the simple fact I don’t know what to eat. The healthy foods I enjoyed eating are now off-limits like salad. I have been trying the past few years to improve my diet, eating less processed foods more fruit and vegetables. Now I can’t do that. A lot of vegetables are too hash on my stomach because of the ulcers. Sometimes I feel like eating but I am hardly ever truly hungry. I eat because I know I need to, my body needs food.

Trying a new food is a game. The doctor told me to try stuff and if you have intense pain and live in the bathroom don’t eat it again. I try to reintroduce foods one at a time every other day to every few days. This way I know if a particular food bothers me and I am not completely miserable (hopefully). I have to admit, at times I eat stuff I know will make my stomach hurt because I don’t know what else to eat. Prednisone cravings do not help.

download

Today, I tried something new and I regret it. I was annoyed because I was feeling pretty good until I ate lunch. Good days have been hard to come by. So when I have a decent day I love to take full advantage of it. Right now, eating something that upsets my system not only gives me a stomach ace but a back ace and severe weakness.

Last week I followed up with a Gastro that works with the Gastro I saw in the hospital. Sadly I had to switch due to the doctor not taking my insurance. Thankfully I ran into the Gastro I had in the hospital and he will be speaking with the new one. I feel much better about things this way. In a week I am going back to the OR for an upper endoscopy. Hopefully, after this I can stay out of the OR for a bit. I am not expecting them to find much, due to the fact I am on a lot of Prednisone. I know what to expect, this will be my third upper endoscopy.

Of course I am grateful for decent moments and days. I am hoping one of these flares will calm down soon. Hope you are doing well. Wishing you pain-free days, filled with blessings. Sending spoons, prayers, and hugs ❤

Encouragement

10447724_10154463871550201_3031549286985030678_n

It is difficult when your illness dictates your life. When you are taped with no way out. Unable to live. Merely surviving one moment at a time. Hope seems light years away. Everything seems to crumble right before your eyes. Everyone has days when they break. It is okay to have break downs as long as you don’t give up. You have everything you need to overcome these struggles.

You are NOT alone. Others feel this way as well. It won’t be like this forever. Eventually you will be able to live life to the fullest again. We must hold on to this hope, for it gives us the strength to keep fighting. Keep your faith. Stay strong. Hold onto hope.  You have so much strength and courage. You accomplish amazing things on daily. Be proud of all you have overcome.

It’s a season for beauty and blessings. Your strong will provide strength and hope to countless people. There will be positive things that occur because of this difficult season in your life. God’s got this. Rest in his loving arms. Blessing are just around the corner. Be open too receive all the Lord has to offer. Gentle hugs spoonie warriors. Sending prayers and spoons.