Horrible Flare!!

It’s been a long time since I have felt like this. At least a few months if I had to guess. My good streak has come to an end and I am in one heck of a flare!

I’ve been doing fairly well for a while now. My pain has been low and tolerable. My swelling has been down. I haven’t had any occipital migraines. In fact, I have been getting out of the house and doing more. I got involved in my local church and have been very happy there! I’ve met a lot of great people.

The past two months I have been working on completing the pre-treatment for getting the stem cell transplant. There has been a lot of dietary changes as I have found out I am allergic to so many things and eating the wrong foods has been a source of inflammation in my body. Plus I have been taking so many supplements to replace so many vital minerals I have lost. These two changes have made a world of difference in my health!

I had lost almost 20 pounds. I have discovered new foods that I now like to eat that I wouldn’t have tried before. Mentally   I have felt great! And physically I was coming along better than I had been before. My energy levels have been soaring! Overall, I was starting to see some major improvements all around.

So why now? Why am I turning into a major flare now? What is causing all of this pain and swelling? I am literally swollen to the point where from my knees down I am almost 3 times my normal size. I have fluid everywhere. The weight I had lost? I put that back on plus another 15 pounds on top of that making me the heaviest I have ever been in my life! My joints are screaming and feel like they are going to explode. Muscles are twitching on their own as if they are hooked up to a TENS unit. It feels like I am back at square one with no end in sight.

It is taking everything I have to not cry out when I am walking and have tears streaming down my face sitting here. I am trying to keep myself calm in attempts to keep things from getting worse. I have Christian Rock playing in the background which usually calms my soul. And usually if my soul is calm, everything else follows. But my body is being disobedient and not following it’s typical patterns. It is being a stubborn teenager rearing its ugly head of contention.

God must have some really big plans for me if I am going through all of this. He wouldn’t have me going through all of this without a purpose or a higher plan. I believe He is going to use me for something great and I am just going through the preparation stages. I would love to know what He is going to use me for, but it is not for me to know this now. I have to be patient for His plan to be revealed. And that is one thing I am in short supply of, patience.

I completely trust God and His plan for me. I just wish He would let me in on the plan once in a while so I don’t feel so lost sometimes, like I do now. I know me going through so much pain is for a higher purpose. I am just simply trying to read the signs as to what that higher purpose is. I just pray I don’t miss it by being so miserable I am blind to His messages.

I truly believe God has a higher plan for all of us. My suffering now is just preparing me for what lies ahead. I just wish I didn’t have to suffer so much to get to the place where God wants me. It makes for a difficult existence and I can only pray His plan comes to fruition sooner rather than later! I have full faith in Him as he directs my life and molds me into what I am supposed to become.

Maybe the stem cell transplant is what my higher calling is. Wouldn’t that be amazing? If this transplant works, I would be a living testimony to the power of stem cell treatments. Whatever the calling is, I am just hoping I can pass these trails, like this horrible flare, with flying colors. I can only hope that the end of the pain is coming soon. Until then, I just need to trust in God and what he has in store for me!

Gentle hugs,

Jenna

To Smile Again

How do we get back to that point as a chronically ill person to where it is ok to smile again? To laugh or love again? It starts from within us.

The saying goes, “In order to love someone, you must first love yourself.” That is so true on so many levels. If I don’t even like myself, how can I expect someone else to even care about me. It all starts with making changes FOR yourself and no one else. If you want to be loved, you need to feel love yourself. For love makes the world go round, right?

The first couple of years going through the diagnostic process I will say were some of the hardest. It seemed like every time I went to the doctor, they were finding something else wrong with me. My seemingly perfect exterior was crumbling and fast. My emotions were all over the place. I was a complete and utter mess who hated every ounce of her being. I thought I was going to be stuck in this hate filled, deteriorated body forever and nothing would change.

So I became complacent with my feelings of inadequacy and imperfection. I bathed in self-hatred and self-loathing. I had come to terms that my pathetic life wasn’t going to ever get any better as my illnesses ravished my body on a daily basis. I had reached the point where I didn’t feel comfortable unless I was angry about something, anything.

And that anger was taking its toll on my body every day. Physically, pain and anguish were all I could feel. They had become my friends in the loneliness that comes with being chronically ill. I just wished others could see the good person I was deep down and treat me with love and compassion.

But the truth is, because I couldn’t have love and compassion for myself, I didn’t have the right to expect it from someone else. How could I expect others to have these amazing feelings about/towards me, when I couldn’t even muster a smile or giggle? I came to the realization that in order for me to receive love from others, I first had to love myself. So I made the conscience choice to start making changes to love myself more!

Just a few short months ago, I made a mental list of the qualities I wanted to work on improve and the ones I wanted to disappear for good. This is one of the major reasons why I haven’t written in some time as I have been working on my own self-improvement. Now it is my grand re-debut of my blog! I knew I wanted to share this process with you all, but I wanted to wait until the time was right. And finally, the time is right now!!

In this checklist I made, I figured out how to work on the changes I wanted to improve. I stopped the negative self-talk. I stopped calling myself stupid, ugly, a mess or any other negative connotation. Believe it or not, this has been the hardest step. I was so used to putting myself down in every aspect of my life, that it was nothing to be calling myself names like idiot and monster. But the more I looked at these words, the truly do not describe me. I started replacing them with words like intelligent, witty, funny, beautiful. At first, I didn’t want to believe myself with these new adjectives. But the more often I said them, the more I believed they were true! Simply changing a negative descriptor to a positive annotation, had made a HUGE difference. We as a society put ourselves down way too much. It’s high time we start singing our own praises and feel the good vibes that come from compliments! And yes, it is okay to compliment yourself.

Another issue I had was looking in the mirror. All I saw was a monster looking back at me. I avoided it at all costs, keeping my head down while I was in the bathroom or putting blinders on when I walked past a mirror. I didn’t want to see what I thought was an ugly figure looking back at me. So I started to force myself to look up and into that mirror. It started with brushing my teeth. I began watching my face and body in the short amount of time I was in front of the mirror brushing my teeth. Every day I looked a little bit more. When I looked in the mirror before, I would call myself horrible names. Now when I look at myself, I exchange the negative word for a positive one. Where I once saw hatred, I now see love. And the more you practice it, the better you become with it. Now, when I pass a mirror, I don’t hesitate to look into it because I know none of the things I saw before were true. I am NOT that hideous, obese monster I thought I was. Actually, I am an attractive, pleasantly plump woman who is a force to be reckoned with!

Before, when I went somewhere, whether to get a haircut or the doctors or grocery shopping, I didn’t care what I wore. I didn’t feel good so I would just put on whatever clothes were comfortable and walk out the door. I got stares and looks of disdain over what I was wearing, but I didn’t care. Or at least I thought I didn’t. But truth be told, I care a lot what other people think of me. So I did a little bit of shopping here and there to get new fashionable clothing. Nothing crazy, but still comfy. I have discovered a whole world out there besides cotton t-shirts that both fit well and are trendy. I noticed my confidence levels started soaring simply by changing the style of clothing I wear.

The last physical change I made was the decision to start wearing make-up again. I decided that since I was mentally feeling better, I should help complete the new outfits by wearing make-up. What a difference! I feel like I look sickly, which I am, without make-up on. I have dark circles and puffy eyes. Red splotches on my cheeks. This part of the process I have the most fun with. I can be creative and wear eye shadows that match my clothes, using bronzers to give my cheeks definitions so they don’t look so puffy. It make take time to go through the process of applying make-up, but trust me, it is so well worth it. It completes the new package of the new you! I get more compliments when I wear make-up than when I don’t. I feel as beautiful on the outside as I do on the inside! I have now tried to make it a rule, that whenever I leave the house, I have one at least a little bit of make-up for myself.

And the last thing that has helped me the most is that I accepted Jesus Christ as my personal Savior. I know this is not for everyone, but it has worked for me. It is completely humbling to know that God sent His only son to us because He loved us so much only for Him to be crucified to save us from sin! I have never felt a love like that before. And the best thing is that God doesn’t care what you look like, as long as you are willing to give Him your heart and trust in His path for you!! It is comforting to know such an unconditional love exists!

Self-improvement is a very personal goal to meet. Only you can decide how and when it is done. But I will be the first to tell you, that while those first few steps are scary, everything else is a breeze. If you can learn to love yourself wholeheartedly, everyone else will follow! Even though physically you are still dealing with your chronic illness, there is nothing wrong with improving the way we feel about ourselves. Just because we are sick beyond our control, that is no reason to hate ourselves!

My prayer for you today is that you are filled with joy and happiness as you beginning your journey of self-discovery!

Gentle hugs,

Jenna

Thankful for Closed Doors!

 

 

It’s hard to believe it has been nearly 3 years since my diagnosis with SLE lupus. And even more difficult to believe it’s a year this week that I had my mild stroke. But what truly get me, is that for the past 4 years, since I started getting sick, I have had to fight for every inch of medical care I received. But you know what? I am thankful for all of the doors that were closed on me! It has made me a stronger person!

 

I remember a time, early in my illnesses, when I would walk into a doctor’s office and almost immediately get kicked out. I would be told I was too complicated. On too many medications. Was told my problems were in my head and that I needed a good psychiatrist. Doors were literally slammed in my face. I had doctors screaming at me. I would leave the office in tears after having yet again begged for help. At the time I was lost, lonely and afraid.

 

And then there was treatment after treatment that failed. It seemed like no matter what I tried, or put my body through, no medication was good enough. Eventually, I ran out of medicinal options other than comfort measures. I was terrified as to what my future would hold. I was scared I was going to die young and very soon. I had lost all faith, not only in the medical system, but in God as well.

 

I was broken. In despair. Wondering why I was going through all of this and what God’s plan was for me.

 

Then, this week I realized it has been one year since I had my stroke. And besides being left with some right sided weakness and a few cognitive issues, I am pretty much ok. I survived that. And despite my health declining for the past year, I have a pretty good medical team in place now that understands my plight for as normal a life as possible. And I had the realization that I was thankful for all of those doors that were slammed shut on me by the doctors and not finding a medication that worked. Then I wondered who I had to thank for all of this and I realized it truly was God and His plan working out for me!

 

God has had me on this path for some time now. I am still unsure of His reasons, but I am just going with the flow now. I realized that every door slammed in my face, every “NO” I heard, every medication that failed was not just another door closing, but it was opening the door to another opportunity. Plus it was making me a stronger person and a better advocate for myself. I was learning slowly how to stand up to these doctors and ask for the testing I needed. I started researching my symptoms like crazy and having possible answers before I even saw the doctor so they would know how invested I was into my health care.

 

If God had not put me on this path, I wouldn’t have had the courage to make the phone call to the stem cell clinic. I would have just let things go with all of the failed treatments under my belt and would have just given up there. But nope. He has bigger and better things planned for me! So, after sitting on their advertisement for about a week, I finally mustered up the strength and called the clinic.

 

I let a message about myself and my diagnosis and asked if they could help. I got a phone call that night from a nice gentleman asking me if I could fill out some paperwork because he knew the doctor would want to hear about me. Paperwork complete and submitted the very next morning. That evening, I received a phone call from the doctor herself! She was kind and compassionate and genuinely felt bad for my situation. She explained to me the stem cell transplant procedure and that she wanted to “bank” (keep stored) my extra stem cells in case they needed to do more transplants. She told me I was a very unique case because of how complex I am. (Meaning all of the diagnoses I have and how sick I am). She said there were no cases or protocols like me to follow but she was willing to take me on as a patient and she looked forward to working with me! I am very excited about this upcoming venture! And while I know there is no guarantee, I am very hopeful this will finally put me in the right direction medically!

 

So yeah, I am thankful for all of the closed doors! Grateful for all of the jerk doctors who yelled at me. I am thankful for the past 4 years because it has taught me so much, despite having gone through hell. I learned I am stronger than I ever thought I could be. And I learned that I need to keep my sight and faith on God because He really knows what He is doing. He is working out His plan for me and I am right where I am supposed to be!

 

Gentle hugs,

Jenna

Optimism!!

A Wonderful Visit!!

The beginning of this week was probably the best few days I have had in years! All was right with the world for a change and ky illnesses were nearly forgotten! Why you  may ask? All because my  “sister” came for a visit!!

 

Ok, well, she’s not my biological sister. But with as close as we are, we might as well be! Beth and I met over 2 years ago in an online support group for chronic pain. We both had been speaking to a mutual friend from the group who kept telling us that we need to talk to each other. Sandy was like an older sister to both of us! Sandy lost her battle with lupus and Beth and I have been inseparable since, at least on the phone!

 

We have so much in common fro both being very sick with terminal, invisible illnesses eight down to the lack  of support we get from out families. We have a strong faith in God who we,know will heal I pus when His time is right for us. We even started a non-profit together that just went national yesterday to help those who need help the most with Syringomyelia, her illness that there is so little knowledge out there for. Our dream was to one day meet in person so we could really give each other that hug we so desperately needed.

Well, that dream came true at the beginning of this week! Beth and her husband  drove from GA, just to see me!! What a wonderful gift that was. Anxiety swirled around me .with anticipation  like a kid waiting for Santa. We talked on and off her whole drive down here. I was so afraid she wouldn’t like me I  person! I knew she loved me over the phone, but to meet in in person is a different ball game! But I was worried for nothing at all!

 

When she got out of the car, I went to her as quick as my legs would let me. She barely got out of the car as she was trying to rush to get to me as well! We hugged and cried and hugged some more. Hey were those kind,o hugs where you could just feel the compassion and love transfer from person to person! Smiles as wide as the Grand Canyon  were exuding from our faces! She was just  as excited to meet me as I was to meet her!! It was a hug to beat all hugs!

 

I have never felt so,calm and happy to b around a person before! We just picked right up as if we were on the phone and literally talked until we fell asleep both nights she was here!  We stayed at home the whole time except Tuesday  night we all went to dinner, my parents,her and her husband, and me. We went down to the ocean  front in Ft Lauderdale and had the most wonderful dinner! Then we walked around for a bit, both of us with our oxygen on, and me with my walker, like we were the most normal 2,people on the planet!!

 

I have never felt so calm and happy around someone as I did Beth !! For the first time in ages I was happy and felt whole and complete! I felt as if I was the most normal person on the planet and I was not ill  at all. Like all of my ailments washed away for the 2 days she was here. She truly is my soul sister!!

I was definitely sad .to see her leave Wednesday late morning. But it was perfect timing as my narcolepsy was kicking in big time from having done so much in such as short amount of time with her. We did not say good bye. Instead we just said until next time. And trust me, there will definitely be a next time!

 

And until that next time comes, I have the memories of the beautiful time we had together at the start of this week to hold on to!!

 

Gentle hugs,

Jenna

Bye-Bye Benlysta…Hello Faith!

Tuesday was my second round of Benlysta infusions. I didn’t know it at the time, but it would be my last!

After the infusion, I started immediately having side effects. I could feel the energy being zapped from me as soon as I walked out of the office door. By the time I got home, the chills were starting to set in. I was already shaky and weak. By that supper time, the chills were in full force along with the cold sweats which were so bad my hair felt like I had just taken a shower it was so wet with sweat! My chest was getting tight. So I called the on-call doctor. They instructed me to take 15mg of my prednisone and 2 Tylenol. I did, but little did it help!

The next morning the side effects were still pretty bad. I slept maybe an hour and a half because I was jacked up on the extra prednisone in my system and my pain was starting to soar. I called the infusion nurse like the doctor had advised me to do the night before. When I talked to the nurse, she told me to get in touch with my lead rheumatologist and she would let the doctors know there that I wasn’t tolerating the side effects well. Well, that’s exactly what I did.

I hadn’t told my lead rheumy what I had gone through with the first round of infusions because I had hoped beyond hope that it was just going to happen the first time, ya know my system getting used to a new drug. Well apparently not. So when I emailed her Wednesday morning, I told her about everything about how Benlysta was reacting with my system. The cold sweats, the chills, extreme pain, nausea and severe diarrhea. She usually is pretty good about getting back to me fairly quickly, but I hadn’t heard from her by the time I fell asleep that night.

When I woke up, one of the first things I did (after make a cup of coffee) was checked my email. And lo and behold there was a message waiting for my from my doc. In not so many words she said she wanted me to stop the Benlysta effective immediately. She does not see the side effects, especially the chills and extreme pain getting any better but rather worse if I were to continue treatment! She also said to see if the doctor giving me the treatments could get me into one of his trials so I could get some kind of treatment.

Great! Just great! Another treatment failed!!!  I am the queen of failure when it comes to lupus! Either it doesn’t work, or I have a massive reaction to it! It’s not fair at all!! Why can’t we find something to treat me when others have no problem at all?? And I worked so damned hard to get Benlysta! I was hoping the side effects would lessen as time went on, but I guess not! If just makes me one big, fat failure yet again!

What is so wrong with me that I don’t deserve treatment too?? I just don’t understand how this can be happening again! This was supposed to be the last possible option for me. The last hope of hopes for any kind of relief! And here I am failing the course of meds. Failing the treatment because I cannot tolerate the damned side effects!! I just don’t understand!!!! Is there something in my life that I have done that is so bad that it is preventing me from getting lupus treatment? Or is my lupus just so out of control and horrible that it is just untreatable?

I am really trying to rely on my faith here and it is super hard! I know God would not want me to continue with something that is harming me. Why was I given the chance to have it to begin with it I was going to fail it anyway?? I think part of it is that I HAD to try it to know I have tried everything now. I have followed God on this path for far too long for Him to lead me astray now! I found myself really questioning God and His plan for me yesterday morning. But I kept coming back to this simple ideal…God will heal me when He is ready for me to be healed.

I must still learn patience. God will heal me in His time and I have to be fully ready for whatever that entails. It may be some experimental new treatment that comes down the line. Or it may be one of the trials the infusion doctor has going. And it truly may lie in the fact that God has me ill on this earth for a reason and I am not meant to be healed until I am called back home. And I am ok with that, too.

I just know I am here for a reason. I was given lupus and these other diseases for a reason. I just haven’t been told what those reasons are yet. My faith needs to be stronger in understanding and following God’s plan for me. I have to stop trying to figure out all of the details and just let things happen the way they are supposed to. Blind faith, like that of a child. I just have to have faith that He will heal me when He is ready for me to  be healed.

And folks, sometimes not knowing, that blind faith, believing that you are going to be healed when nothing has worked before, is a difficult thing to do. But I am not here for the easy parts of life. I am here for the challenge. And right now, I just need to remember that God’s got it!

Gentle hugs,

Jenna

I HATE LUPUS!!!!

Today has been one of those days that makes me realize just how much I hate lupus! It also comes with the re-realization that lupus can and will attack anytime, anywhere and anyhow!

 

It started off fairly normal with md waking up at my usual 3am. But that has been the only thing normal about it! I couldn’t enjoy my coffee because it made me super nauseaous and sick to my stomach. So thr next 4 hours I spent running to the bathroom. Lucky me!

 

My nurse got here and helped me shower and get ready for the day around 8am. With my belly still rumbling the pwin levels were rapidly rising making it hard to even walk inside my house. Somehow, I still needed to make it to Walmart for my monthly shopping trip. We went around the store as quickly as possible because the longer my legs were down, the worse they were getting, and fast too. Thankfully, I was in an electric cart and my list wasn’t  too long. Survivimg the store we headed home.

 

Now it was time to put everything away and get ready for my doctor’s appointment. With all my goods in their proper homes, pain was shooting through my legs and back. I had less than an hour to try to rest and to out my feet up before I had to leave again. So I sat in my recliner, legs as high as they would go and my back against the I heating pad. Fast forward  45 minutes, with even higher pain and super bad nausea, I finished getting ready for my neurologist appointment.

 

On the road again, my brother driving, being in the car was the worst place for me. I was cramped, getting car sick and feeling e ery little bump in the road. It was miserable!

 

This appointment was to finally get answers from all of the myriad of rigorous testing I have been going through the past few months. I usually try to prepare myself for the worst case senario, but today I was completely caught off gaurd. I think it was the intolerable pain and nausea that were starting to mess with my mind!

Anyhow, the results…My EEG was clear meaning the myoclonic jerking I have been experiencing is not from epilepsy. As the neurologist explained, they are a direct result of my lupus. There is no other answer. I flail like a fish because I have lupus! To treat it, imhave to take benzodiazapines twice daily and pray that works. Then we talked about the burning, tingling, excruciating pain I get in my legs, feet and hands that feels like I am being eaten alive by fire ants. He did a quick reflex check and found that certain reflex points are severely diminished. His conclusion was that I have neuropathy and just need to complete an EMG study to conkfirm it. This too is a dirext result of my lupus! Lastly i learned my muscles on either side,of my spine are so severley spasmed they are literally pulling my spine in different directions.  Again, I have lupus to thank for that!

 

This is all on top od recently finding I definitely have both night terrors and sleep paralysis. I also learned I more than definitely have narcolepsy. I just have to complete the 2 part sleep study to prove it. What has causex all of this you ask?? Why that would be my lupus!

 

Home now, I am near tears the pain is so bad. I can barely walk the 10 feet from my bedroom to my bathroom. My toes feel like they are broken with the nails being ripped off. It feels like someone has taken a sldgehammer to my hands. Plus i am getting a lovely migraine to boot. Thank you lupus!

 

Isn’t  there anypart of my body that lupus isn’t  going to attack? It is causing  almost all of my medical peoblems. Days like this just make me go absolutely crazy! My body is literally at war with itself and I dont think I am going to win this battle. There is just too much going wrong with my weakened body that I dont know how much more it cwn take. Lupus is the root of all evil!

 

Andmto think i get to look forward to another wonderful Benlysta infusion on Tuesday followed by another weekofmside effects and pure hell! I am losing my mind!!

 

All of this because of lupus! What did I do to deserve this? Days like today make me want to scream at the top of my lungs…”I HATE LUPUS!!!”

 

Gentle hugs,

Jenna

Never To Pass

“Never to Pass”

 

Sitting here quaking

On this moonless night

Nothing left to bargain

Losing this damned fight.

 

Once lively twigs

From the Balsa tree

Snap into splinters

While on bended knee.

 

How quick this descent

Into Hell on Earth has been

Never to enjoy

The sun’s rise again.

 

Twisted and tattered

This shell has become

A once loving soul,

Has now come undone.

 

The will to survive

No longer abounds

As this weary shell

Is crushed into the ground.

 

Holding on for so long

As gloomy night becomes day

Burdens grow heavier still

With nothing left to say.

 

Having fought for so long

Exhaustion resounds with a his

A life to be forgotten

Never to experience true bliss.

 

Snakes filled with lies

Exuding from bedeviled tongue

Poisoning a once sweet life

While so damned young.

 

Cursed by witch’s boils

Across body and face

Never again will she

Find her life’s place.

 

Once porcelain skin

Now a hideous form

Crippled by despair

Wishing to never have been born.

 

Trembling as windy water

On a dark murky lake

Knowing in her heart

She has a sealed fate.

 

One of luxury and joy

She’d dreamed of for so long

Ripped out from under her

Leaving her without a song.

 

Venoms pour their wickedness

Throughout her fragile veins

Stealing and happiness

Leaving only external pain.

 

Medicine men now mock

Her tragic filled story

Prophesying she’s beyond hope

And deserves no glory.

 

Kin no longer wishing

To take part in her journey

Leaving her tied and strapped

To a horrendous gurney.

 

Her beating heart quivers

Pounding with strife

Before it has truly begun

Halting her beautiful life.

 

Frozen in terror and pain

On this hideous path

No soul can comprehend

As she exudes black wrath.

 

Tears for a lover

Destined to never meet

As she stumbles and falls

On her broken feet.

 

As crumpled lifeless vessel

Her agony remains

As enemies look upon her

With judgements and disdain.

 

How dare they claim

To care at all

It was them who disappeared

As she would stumble and fall.

 

Tis I who am

This sorrow filled lass

Knowing well and full

This shall never come to pass.

 

JPrice

8/20/2014

Benlysta…4 Days Later

 

 

I am ready to be over this Benlysta bandwagon of a hell ride! It just seems like all of my senses have been on high alert in a war zone and they are ready for a reprieve and a return to normalcy.

 

This morning I had a little bit of energy. Still felt like death warmed over, but energy none the less. So I decided I would go to the mall to exchange a shirt I bought that’s too small. I wanted to do an even trade because I really like the shirt, so just wanted to change sizes before they ran out. So off to the mall I went.

 

All I did was go to the one store and completed my main objective. But you would have thought I did a triathalon, on the equator, dressed for sub-zero temperatures. I was sweaty, my pain was high, I could barely walk straight and I was lucky I didn’t puke in one of the handbags I passed trying to get out of the store! Driving home was another story. Let’s just say I am lucky I made it in one piece!

 

I was gone for maybe an hour at most, which isn’t really all that long to be away from the house. On a given day, I can usually tolerate being out and about for several hours without too much of a problem. Yeah I will have the aches and pains when I get home, but it was nothing like this. It was as if the hour I spent out I was being tortured as a prisoner of war!!

 

I couldn’t stand up straight, my legs were wobbly and weak. I was extremely overheated. My eyes were consumed with exhaustion and delirium that was beyond my control. Again, my breathing was labored and shallow. It felt as if someone had taken a sledge hammer to my feet and broken every tiny little bone and I still had to walk like that! I literally rolled out of my car and took almost 15 minutes to walk the 100 ft to the front door! No fun at all!!

 

After forcing myself to eat a bit of lunch, I shuffled  my ragged body to my room, curled up in my recliner and fell dead asleep for about  hours. And I really haven’t moved since. Not because I haven’t wanted  to cause believe me I definitely have the want to. It’s was just that I couldn’t. I got up for dinner and ate very little as the nausea is extremely overwhelming. Now I am back down again. No energy and feeling like I have been hit by 3 big rig trucks!

 

It’s time for me to call it a night. Today is partially my fault for thinking I could do more and pushing myself to do it. But the rest I firmly believe is a result of the Benlysta. People I have talked to have trying giving me the sage advice that “this too shall pass,” or “it can’t be that bad.” Well, it’s not passing and it is definitely that bad.

 

What people don’t realize is everyone reacts to medications differently. We all have different metabolisms which in turn makes it so if one person doesn’t have any side effects, me I get all of them! Especially when it comes to IV infusions, I am extremely sensitive to medications. If it says it is a possibility as a side effect, than I usually get it in some shape or form. It really sucks for sure, but I am learning how to deal with it.

 

All I know at this point is God is my guide and he will see me through all of this. Whether or not the Benlysta work, it is His plan not mine. I just have to have faith that this is going to work and the side effects are worth it.

 

Well, it’s getting late and my eyes are getting heavy again. I am praying that tomorrow’s report will be a bit better than today’s. Sweet dreams everyone!

 

Gentle hugs,

Jenna

Benlysta…3 Days Later

 

 

Once again, here I sit in front of my computer trying to figure out how to put the misery I am in on paper. I’ll give it my best shot!

 

Thursday night was by far the roughest since the Benlysta infusion. I excused myself from the dinner table yet again, hoping beyond hope to just rest my broken body. I was feeling very full despite having very little to eat. I could tell my was going to be upset again in the middle of the night just like it had been the nights before. But it was still fairly calm for the moment, just a tad of the bloating was settling in, enough to make me uncomfortable. But I was exhausted enough to start nodding off trying to watch TV around 830-9ish. For about an hour and a half I was in and out of it, slipping into sleep but jerking myself awake a few minutes later. Come 10ish, my body decided to revolt against sleep and was wide awake with pain, gas, bloating and everything in between.

 

Around midnight I decided to just come out onto the patio and try to calm my senses. This is one of my favorite places to relax in the middle of the night. Very serene out here. But the entire night, I had such bad gas I could have given a cow competition! And it was painful too. After rumbling and exploding all night, my belly finally calmed down enough to where I could put a little food in it so I ate a banana and some homemade granola, just to put something in it. Around 5ish, I finally started getting to the point where I felt I might be able to sleep, so I headed inside.

 

I had to take another round of sleep meds, but I finally drifted off to sleep around 530ish and didn’t wake up til almost 7 when I came outside for a few minutes after I fixed a glass of water. I think that has been key for me going through all of this, staying extremely hydrated! I was falling asleep sitting up and instead of trying to pretend I was ok enough to stay awake for the day, I actually listened to my body and went back into my room where I immediately fell back to sleep, not waking again until 1130am.

 

When I woke this time, instead of feeling refreshed and invigorated from some healing sleep, I felt sluggish, sick and filled with pain and nausea. I knew I had to get nutrients in my system so I made a green smoothie, which has been my go to meal replacement as of late. They have been a life saver for me, especially on days I am not feeling well and need to still get something that is packed with vitamins, nutrients and supplements. But I could barely keep it down yesterday. It felt like I was trying to put poison in my system. The nausea just intensified along with the bloating and pain. My legs were just screaming all day!

 

I did make it to my afternoon doctor’s appointment, but barely. Sitting in my dad’s SUV, while very roomy,  I felt like I was sitting in a cramped box. I am just grateful he doesn’t hinder me from using my wheelchair when necessary. If I didn’t have my wheelchair, I would have cancelled the appointment. And  making it through the appointment itself was a challenge. When you are that exhausted and uncomfortable, doing any task becomes that much more difficult. I was trying to keep myself from nodding off and trying to pay close attention to what the docs were saying. I made it through, but barely.

 

The rest of the evening was just as challenging. A simple phone call to my sister became a marathon of sorts with my literally trying to focus in on each word she was saying, trying not to fall asleep on her, but still feeling like I was confused for most of the phone call. At dinner, I finally ate a decent amount of food, but that’s because my dad had sliced fresh veggies and that was just what my body craved. Finally something tasted good! Even though I was still having trouble sitting at the table, I was able to sit there for the whole meal for the first time since the infusion. My pain levels did rise, but not as high as they had been.

 

The rest of the night is a blur as I was pretty much in and out of it, slipping from being awake to nodding off for short periods of time. I have been awake now since midnight, unfortunately. But I felt somewhat refreshed with the sleep I had gotten so I am not trying to complain about the lack of sleep too much. And so far my pain seems to be down a bit, but we will see where it goes from here. I am still bloated and gassy, but I can deal with that. The nausea isn’t too terrible yet either. But I know all of this is subject to change at any given minute so I am appreciating the small triumphs while I have them!

 

I am hoping today will be somewhat back to normal. I need today to go back to normal for me!! But if it doesn’t, then I’ll have to be ok with that too. God does not put on us more than He thinks we can handle. Well, I tell ya, God must think I’m a badass for all I have been through these past few years! I think I have definitely earned my stripes in courage and bravery for sure!!

 

Well, I might try to nod off for a bit now. But I will post later (much later as it is only 230am) today with my progress or lack thereof. Wish me peace, rest and low pain for the remainder of the day!

 

Gentle hugs,

Jenna