My Open Letter To Lupus

Dear Lupus,

Back in 2012 I was happy and just going about my life and was actually very excited about where my life was taking me….

But you couldn’t leave it that way. You just had to make yourself known. You came into my life like a hurricane. You set me down a path that I had no say in and was not really ready to face. No one asked you to leave that dormant state you had been living. And you certainly weren’t given an invitation to become the center of my life. However, you did just that and in the process changed just about everything I knew and was comfortable with. You came in and made it known by all that you were GOING TO BE THE CENTER OF ATTENTION. Who asked you to come? Who asked you to come into my body and take my life away?? I sure as hell didn’t.

📷 Hannah Busing/ instagram.com/hannahbusing

Looking back, I can see that you made yourself known and reared your ugly head the first time when I was in highschool. Although no one called you by your proper name. Instead they kept telling me that I had a bad case of mono. Mono that lasted SIX MONTHS?!?! Really?!?? Being a teenager I always wondered why the simplest tasks made me exhausted and how the people around me could go-go-go for hours, when I couldn’t. It was because of you LUPUS.

You went away for several years for the most part and I was grateful. Even so, I continued to wonder through the rest of high school and college why I couldn’t be as active and involved like the kids my age etc. it was bc of you. Damn you for taking away my years when I should have been having fun!

📷 Erwan Hesry/erwanhesry.com

Finally six years ago you officially made your move. You moved in for good, and brought all your baggage. Although we never discussed this, and I never agreed to this. I didn’t give you a key or clear out a drawer for you. Instead you just made yourself welcome. Since that day that seems so long ago you’ve made my life or a good part of it a living hell. Because of you I have lost friends because they think I don’t want to see them or that I’m just full of excuses as to why I don’t want to go out to the bar after work. Or because they simply don’t understand when I say I’m tired it’s not just lay down and take a nap tired it’s pure exhaustion. Because of you I had to walk away from my nursing career after only 11 years. I planned on working in the medical community until I retired. But you once again had another plan. And your plan won, even though I didn’t agree. But the biggest problem I have with you isn’t related to losing my career, or friends. My biggest issue is how hard you’ve made it for me to be able to watch my sister play ball. She is one of my very favorite humans in life. And watching her pitch is one of my all time favorite things to do. But because of you I was virtually unable to do the last couple of years. Mainly due to the intense heat intolerance I developed due to Lupus. And the other issues that the heat causes for me, like headaches. And it literally has broken my heart. This summer was the last ball season of her career and I only got to see her once. I know she understands but it still hurt me so much.

You came and brought along uncontrolled pain (at times), long term steroids (leading to weight gain), inability to be in the heat or sun, sleep issues, and a plethora of other very undesirable conditions that go hand in hand with you. I can never thank you enough for your generosity. You brought all your friends (other medical conditions) along with you when you moved in. I didn’t want you and I definitely didn’t want any of them!!!

I have decided I am done, you have been “kind” enough. But now it’s is time to go away and take all the “gifts” you’ve brought with you that are also not welcomed here.

📷 Joshua Coleman/ joshstyle.com

One of the reasons I hate you the most is because between you and your “friend” endometriosis I will no longer be able to carry my own baby. And I’ve never wanted anything more than to be a mother. But because of you, the side effects of the drugs I take to treat you and your friend endometriosis, carrying my own baby is no longer possible. My lifelong goal gone in a second. I have always wanted to adopt so I know that’s still an option. But it’s still not quite the same as having your own baby. But I will be greatly appreciative of any child that God gives me.

When you leave you can also take the Adrenal Insufficiency and Hemiplegic migraines with you. Because of the three of you I had to quit my job and move home with my parents. Because you were all being so mean. At times of big flares, illness or hospital admission my blood pressure can drop and stay in the 70’s and 80’s. Also because of you I have spent more time in the ER/Hospital in the last FEW YEARS than one person ever should IN A LIFETIME.

I’m tired of all of you. Tired of all the medications, the depression, the anxiety and most of all the pain.  I never asked any one of you into my life, yet you are all here. You have changed my life in more ways than I can count. I’ve lost the majority of my local friends, I can no longer work on gaining a degree to teach nursing school because of you. You have even made it very very hard for me to hold down a job. You need to pack up and get the hell out of my life! GO. GO I tell ya!!

One thing that keeps me going is mysister’s unwavering faith in God. And her prayers. Because of her I have been able to find my relationship with the Heavenly Father again. Because of that I now live by the verses.

Philippines 4:13 I can do ALL things through Christ who strengthens me.

Isaiah 41:10 So do not fear I am with you; do not be dismayed for I am your God. I will strengthen you and help you. I will uphold you with my righteous right hand.

With Love,

-Amber

Giving Up or Giving In

Giving up? Or Giving in? Have you every really thought about the difference or how either one could impact your life? I think it’s safe to say that most haven’t put much time into the meaning or impact of those two similar statements. And if they have it’s probably because they are staring adversity in the face. For anyone who has ever gotten a piece of news that was life altering, whether it be about a job, their health, or their family, giving up has probably at least crossed their mind. The same goes for anyone living with a chronic illness. The diagnosis in and of itself can lead to feelings of wanting to throw in the towel. Not to mention living with that condition for the rest of your life. Eventually we will all come to a point in life where we have to decide if we are going to give in and make changes and learn to live our life to the fullest or give up and throw in the towel!

So whats the difference between giving up and giving in? For many giving up causes them to feel as though they have failed. Like they weren’t strong enough to be able to handle the situation at hand. While giving in is more like surrendering. It is more like you are accepting that you can’t change certain things and are open to finding a way to deal with the situation that is positive and can be done within your limitations.

Lets take a moment and look at some examples of the difference.

Giving Up: “The pain is just to much! I can’t handle it. I am done trying to do anything but stay in bed.”

I know we have all felt like this from time to time and that is okay. That being said if we want to continue doing the things we like to do we have to change our mindset and put a different spin on how we look at our pain. Because for many chronic pain is going to become the new norm of sorts, so staying in bed for the rest of your life isn’t a valid option.

Giving In: “I know I cannot control my pain level as much as I would like to. I am sad and frustrated but I will show myself some grace. I will rest when the pain is bad, and do all the things in my power to deal with the pain. I know the pain may slow me down, but it doesn’t have to completely change my life.”

There are going to be days  when the pain is at it’s worst and you are going to want to give up. And that’s okay. A day here and there where we feel defeated is natural. But to live the life we want to live we have to change our mindset and not allow the pain to change the things we enjoy or who we are at our core.

Yuris Alhumaydy, instagram.com/y.rss

Giving Up: “I can no longer do the job I loved so much, therefore I am useless”

This is a BIG struggle for many with chronic illness. When our lives are impacted in a way that we are no longer to do the job we loved it is easy to feel useless. Although it is likely that you are your own worst critic and no one else is viewing you as useless.

Giving In: “I wish I could continue to do the job that I loved so much, but that is just not possible at this point. But maybe I can find a job that I enjoy doing, that is less physical and will not cause my disease to flare.”

Losing the job you enjoyed so much is hard and chances are high that you will question your self-worth. That’s okay for a short time and then you need to realize that you didn’t give up your job you gave in. Take some time to mourn the changes that occurred and then start looking for something you can do that is better for your health. It is likely that when you find something that is better for your health it will also be better for your psyche.

Thought Catalog, thoughtcatalog.com

Giving Up: “The girls are going out to dinner and dancing. I won’t be able to keep up with them dancing so I just won’t bother going at all.”

It is hard when you can’t keep up with your friends and do the things you used to love to do. We have all been this person though, we feel like since we can’t enjoy all the activities shouldn’t go at all. It is easier to say you can’t go rather than leaving in the middle of the evening when everyone is having so much fun.

Giving In: “I know I will never make it long enough to go to dinner and then dancing with the girls, so I will just go to dinner.”

Even though it often feels like we shouldn’t bother going for just part of an evening out it really is a good way to give in.  You don’t have to give up on the whole night out with the girls, you just do what is best for you. It is good for you to get out of the house and spend some time with your friends.

Ben Duchac

Don’t get me wrong, there are going to be hours, days or even weeks where you just want to give up.  You’ve had a bad day, your condition is flaring, you are in pain and crawling into bed and hiding from the world seems like the best option.  And while it is a natural reaction and okay to do for awhile. It is not good for you or your health to live in that negative space.  There are things that we will give up on, like friendships or relationships with people who didn’t care enough to stay around once you got sick.  But, that is something that we didn’t chose to give up, they did. We can never change someone else’s thoughts or feelings, and if you try chances are you will fail. In situations like that it is better to give up and move on rather than putting time and energy into a failing relationship. In the long run you have to focus on YOU and what is in your best interest. Doing things that make you happy and won’t cause your disease to flare. If that means missing a night out here and there, or quitting a job that is too hard for you to continue doing then that is what has to be done.  In the end we all need to find a way to show ourselves some grace and give in not give up.

With Love,

Amber

A Day In The Life…..Chronic Pain

Co-written by Amy Nora

Chronic Pain… is just that. It’s chronic, meaning it’s something we live with ALL the time. It is not the same as stubbing a toe or knocking your knee on the corner of the table.  There is no cursing or exclamation of words and a few minutes later life is perfectly normal and you are moving on.  Nor is it like breaking a bone, wearing a cast and being done with the pain and annoyance 6 months later. Chronic pain forces you to live differently.  Life becomes methodical, more deliberate in the actions we take, and how we live our lives.  This includes the simple things like getting out of bed, going out with friends, cleaning, or trying to cook a meal.  You live you life in pain; therefore, you come to accept various levels of pain as normal.  This does not mean that you would constantly rate your pain a 10/10, you may rate your pain as a 2/10.  However, you had to stand and make a sandwich so now that has spiked to a 7/10.  This is a fight fought daily by millions of Americans with degenerative diseases or chronic medical conditions.

I wanted to give you all a look into a day in life of living with chronic pain. But I decided to go about it a little differently. My friend and frequent contributor Amy Nora and I will both be sharing our views of what like living with chronic pain is like. As living with chronic pain can look very different for different people.

Amber’s Story

I feel that there is so much negativity in news about pain and pain medication these days with all the issues with the changes in the rules and regulations with narcotic prescriptions. There are people killing themselves because they can no longer receive their meds. Others are being fired from their Pain Management Doctors because they don’t take their pain meds frequently enough. We have all heard the stories. But I don’t want to focus on THAT today. I want to bring light to what a real day of someone with chronic pain is like. I want to talk about what a day with multiple conditions that cause chronic pain can be like. I think many people have a stigma in their mind that people with chronic pain take their pain meds and may have some pain everyday, but most of their day is spent doing what they want with no big issues. Just so we are all on the same page here’s a point of reference: besides taking pain medication I also use a combination of heat, hot showers, massage, muscle rub and yoga to treat my pain. I do suffer from multiple chronic illnesses that cause chronic pain, I live daily with Lupus, Fibromyalgia, Debilitating Migraines, Endometriosis, Interstitial Cystitis as well as undiagnosed chronic back, hip and sciatic pain.

For most people when the alarm goes off or they wake up, they probably start going through the day ahead in their mind. As far as what they have planned, what’s scheduled, what they are making for dinner etc. For me and those with chronic pain the first thing I do when I wake up is lay in bed for about 15 minutes let my body wake up so I can assess my pain. I have to lay there for a little while to let my body connect to my brain so I can really take account of how I am feeling.  I generally start at my head and work down. This morning for example, I started with my head, and the pain was like a 2/10. Continued down to my throat, neck and glands because I have been fighting a cold/sinus infection, that was like a 2/10. Then down to my shoulders, elbows and hands. Left elbow was a 4/10, still not sure what that was about, but it has been happening a lot lately. My hands, about a 4/10 as well. So I start doing some stretches to see if they are just stiff or if they are going to hurt all day. They seem to be stiff and the pain seems to ease with stretching, so that is a relief. Down to my belly, cramps are like a 6/10 as endometriosis causes MEGA cramps when its time for your cycle. My bladder is probably an 8/10, because I didn’t wake up all night and it feels like it is ready to explode. My low back is a 6/10 as is my left hip, and for the first time this week I didn’t wake up with any sciatic pain or pain in my left calf. Which has been very painful everyday this week. Overall, I would say my pain would be about a 6/10 this morning. So now that I have assessed the pain that I woke up with, now I have to decide what I want to do about. Do I go ahead and take something before getting out of bed, or do I wait and see how things go as the morning progresses? That is sadly the question I address each and every morning after I wake up.

Generally, my rule of thumb in the morning is that if my overall pain is over a 5/10, I go ahead and take something for the pain. I have learned that if I don’t the day is NOT going to get better. And I will most likely not be able to get the things on my to-do list done. Or at least not until later in the day. So this morning that is exactly what I did, I took something for pain got out of bed and did my morning stretches that allow me to be able to move in the morning.  Without those stretches, thanks to the fibromyalgia I would not be able to move first thing in the morning.  I won’t bore you with the exact play by play of my day. But at each step of the way I have to decide if I can complete this task or if I should wait and attempt it later. This morning after getting dressed and having breakfast, my first task on my to-do list was cleaning my bathroom, I knew I didn’t feel like it but it can only be put off for so long. For most able-bodied people they could probably go in and get it done all in one fail swoop. For me however, it takes several steps. Due to my pain and fatigue, any multi-step project will almost always require several breaks. Just to clean my small bathroom this morning I had to stop and rest FOUR TIMES!!!! And it took me over FORTY FIVE MINUTES. Even with the breaks, I still had to lay down with my heating pad on my back and abdomen for about 30 minutes before I could go on to my next task.

I continued on with my day the same way as above. I vacuumed and then had to rest and use the heating pad. Then I did some laundry and had to rest. After eating lunch the pain has escalated again to about a 7/10 so I had to quit what I was doing and lay down. Completing simple tasks is no longer simple. It has to be well thought out and planned. That is generally how it goes for most people with chronic pain/chronic conditions. I can no longer just complete a task without resting or taking several breaks. Things that used to be simple and easy are no longer so easy. Everything that is done has to be well thought out.

I miss my time out with friends and family. But a night out or even time at home with friends or family for dinner and a movie requires major planning. Over the years I have learned that if I want to spend a day out of the house no matter what I am doing I better prepare. I need to make sure I rest all day the day before, and maybe two days before. And I know that I will most likely be in bed and doing nothing for several days after. For what seems like a normal day out of the house shopping or an evening out to dinner and a movie to an able bodied person is much different to someone with chronic pain. For example, last week, my little sister played in her last competitive softball tournament. And I just simply wasn’t going to miss it. Sadly, I knew I was going to pay for it because I didn’t feel good going in and it was 95 that day. (People with lupus simply do not do well in the sun.) So I planned ahead and took it easy the day before, and stayed in bed till the last possible minute the morning of, got dressed, and got in the car for the 45 minute trip. I was already hurting (at about an 7/10) by the time we got out of the car, and at that point we still had about 15 minutes to go before the 75 minute game would start. I had taken my pain medication before I had left the house but it wasn’t doing much to relieve the pain. I made it through the game, a quick lunch after the game with the family and the 45 min drive home. After my shower, a COLD shower, I crashed. And I certainly paid for it the next couple of days. Everything you can imagine hurt, my back and hip from sitting, my head from the heat. And just about every joint you can name. I really was hardly able to get out of bed the next day because the pain was so severe. That being said I wouldn’t have changed it for the world. I got to see my sister play one last time. I would have done it 100 times over just to be there especially knowing how happy it made her that I was there to see her play.

If my pain is tolerable and I actually get out of the house like I talked about above when I attended my sisters game. Usually as soon as I get out of the house I am counting down the time until I can get back home to my bed and my heating pad. Generally I can’t focus on whatever I am doing because my pain is such a point of focus. I do enjoy getting out of the house but I can’t help but think about how much I am going to pay for leaving the house. So sometimes we have to pay for the good things in life. It shouldn’t be that way but it just is. We shouldn’t have to deal with all we do, but we do and we learn how to deal with the hand we were given.

Amy’s Story

I had my first experience being treated as a drug seeker this week, which I will tell you about in just a second. But I first want to give you a little backstory. Only a few months ago my family moved to a new state leaving behind the doctors who had treated me for many years. Knowing there has been so many issues with pain and pain medication, on my first visit I brought all of my medical records with me. In the state I moved from, the doctor treating the source of your pain would be the one that prescribed your pain meds.   I discovered that my new Rheumatologist does not write pain meds.  I take a rather mild medication; however, he preferred that my PCP write for anything related to pain.  I use a combination of physical therapies, yoga, tai chi, breathing exercises, rest, heat, massage, and tears to handle and tolerate pain.  Meds were a last resort for me.  In fact, this was a decision that was not taken lightly, and very seriously discussed with my previous doctor.  When I went to my new PCP to get the medication, I was promptly given a long lecture on how doctors are monitored and restricted, and how they are not allowed to write too many of these prescriptions.  They did not look at the scanned records that are in their system, they did not call my rheumatologist.  I was lectured.  I was informed that I had to go to a second doctor to get pain medication, because that practice encouraged doctor shopping.  Something the medical system here should know and discourage; however, this was their policy so I was being forced into this practice not by my choice but by their policy.  A prescription was finally sent to the pharmacy which I picked up the next day; only I discovered the prescription was for THREE DAYS of the medication.  I do not take the max prescribed, I do the best I can because there are no therapies left on the market for us to try.  We are at the end of the proverbial rope.  Asking for help once in awhile should not result in being treated like someone with a contagion that will cause deadly harm.  I feel like physicians are pushing patients into medical marijuana (legal in my state) and can see why patients feel forced to seek illegal options.  When you deal with chronic pain, you learn quickly what things will exacerbate it, what things you do that will make you pay a little bit of a higher price, and things you can do to help here or there.  I have Lupus, Rheumatoid Arthritis, Sjogren’s Syndrome, debilitating Migraines, Epilepsy, and Fibro.

If I am lucky, I wake up and think that my eyes might open properly the first time.  My dog is a service dog and has been trained to help gently wake me.  Part of this is because of pain, but also if I am jarred awake it is a promise of a day with a horrible migraine.  I begin taking stock of what is alive or asleep or wishing it were dead on my body.  One thing with RA is morning stiffness, so often you don’t allow you initial impression of the day define you.  I roll out of bed and hope I don’t actually fall.  The first 15 minutes of the day moving is generally agony; an 8/10 because your muscles and joints have no idea if they even want to move.  This does not include all of the other fun stuff like cognitive dysfunction (you can’t think clearly) or your eyes don’t actually focus (thank you Sjogren’s).  After 15 minutes, sometimes 30 minutes, you have an idea of where you are going to hurt the worst for the day and what you will be dealing with.  Normally, I know that my knees, hips, and lower back will always be a 5/10 and that is just what it is.  If I having a migraine, I automatically medicate for that, and if the rest of my joints are above of 6/10 I will take medication to help with that.  This is when two things hit me simultaneously.  My need for coffee or tea and also what will I be able to do today?  Is it a stuck in bed day?  Maybe I can do a couple things, but I will have to depend on my cane?  Oh, it is a good day.  I can walk around and get two or three things done and just rest in between and after.

I had one day recently when I got really ambitious.  I wanted to get sheets, blankets, and clothes washed and dried in the same day.  That morning my pain started at around a 5.5/10.  My energy was pretty decent, I had a plan of action in place and life was good.  You become a bit of a master planner with chronic pain and any chronic illness.  I have learned that I can have the best plan, and it will go straight down the toilet.  I started with the regular clothes.  Just the act of getting them moved from the washer to the dryer, using my laundry aid, escalated pain to an 8 and delayed me getting to my next load for an hour because my legs and back gave out and I was unable to tolerate the simplest actions required to put a load of laundry in.  Sadly, this was with pain medication on board.  My goal was three loads of laundry for the day.  To an able bodied person, that may seem like nothing, for me to complete that in one day would have made me feel like I had just climbed Mt. Kilimanjaro.  When you have a chronic illness that no longer is how life happens.

For me, time with friends is one of the most beautiful and precious things.  It also is the one thing you lose that people don’t understand about you.  When first diagnosed I thought that I could just power through, now I have learned the price I pay.  Last week I went to the movies with my sister and niece.  I wanted to see Mamma Mia 2, they did too quite frankly.  It was girls night.  I had to rest 2 days prior.  The night I went I almost collapsed going into the theatre, and I did collapse coming out.  I started the night fatigued and about a 5/10; before we left I had a slight moment where I wanted to sit down and sleep for a month but I was not missing.  By the time I got home I was about a 9/10.  I have been flaring, which in our world means additional pain, swollen and stiff joints, and fatigue since.   I would not trade that fun night though.  There is a price you pay for all of your time.  I know with this post, I am not asking for sympathy.  But before you make a judgement, pause and maybe try and step into another’s shoes for just a moment.

Even our families and closest friends don’t always understand. Chronic pain is hard for anyone to understand because it can’t be seen. When you look at us we don’t look any different from the next women. Unless you you see us limping, walking with a cane or rubbing a sore spot you wouldn’t know we were hurting. They try to understand, and at first they do really well. But even the closest of friends or family start to get frustrated after repeated cancellations. They think back to the time they sprained their ankle or tweaked their knee, and the pain was gone in a couple weeks and they don’t understand why “a little pain makes life so hard!”

What Amy and I shared above is simply a small glimpse into the life of someone who has chronic pain. Someone who has to carefully plan each and every task they do on a daily basis. No on will never be able to explain to what it feels like to feel like your body is no longer your own. Your head and heart want to do one thing but your body says NO. No one will ever be able to explain to you how hard it is when you have to turn down your best friend for the 9th time, simply because the pain is to unbearable. No one can ever explain what it feels like to be told by the people who you are closest to to “Just take some Tylenol, and a nap, and you will be fine!” No one will ever be able to tell you what it feels like EVERY SINGLE TIME you go to a doctors office and they see that you take pain medication, and you can see their thoughts about you change for the worse. No one will ever be able to tell you how it feels to have someone tell you to “Just exercise and lose some weight, and you will feel better!” All that being said, until you have lived and walked in our shoes please try to keep your judgments about us until you meet us, and really get to know us. Yes, my pain impacts almost all of my daily life, but it DOES NOT make me who I am.

With Love,

Amber & Amy

Don’t Leave Me Out

If I had a dime for every time I’ve been told by a friend or family member that they didn’t want to tell me something or invite me to something because I’m sick, I would be RICH!! I’ve been left out of all kinds of news and events over the last few years! News about a new baby or a new job, or that someone lost a job or was struggling with something, or being left out of a fun night out. All because I am sick. I know that my friends had the best of intentions, but I’m just a normal person! I can handle anything you don’t want to tell me. In fact I am more impacted when I am left out more than when they share worrisome news.

Yes, it’s true I have chronic conditions, some of which are impacted by stress, but it’s my stress not your stres. Just because you are stressed over your news doesn’t mean I will be. I totally understand why people don’t always share their news with me. They think by not telling me it will protect me from undue stress. When in reality not telling me makes me worry more and tends to make me more upset. I may start to worry that we aren’t friends anymore or that you are angry with me for some reason! Learning that I wasn’t told makes me feel like I was never given the opportunity to share in your good news or support you through the bad.

Just because I am sick doesn’t mean I don’t want to know all the things about my friends. It also doesn’t mean I can’t be happy for them. For instance, I know some people who feel that those who can’t have kids wouldn’t want to be told about a new pregnancy. They assume that by telling me that it will make me sad and frustrated. It’s true that I will probably never be able to carry and give birth to my own kiddo, but I’ve come to terms with that. While I may be slightly sad when you tell me you are pregnant, that doesn’t mean I can’t be happy and excited for you!! I still want to attend baby showers and buy the baby gifts. And I will always want to snuggle with a brand new baby!! I understand the reason for not sharing but PLEASE don’t leave me out!!

Don’t leave me out when you are making plans for a girls night out either. I may not be able to attend because of a migraine or a respiratory infection or a flare. But I still want to be invited. Finding out via social media that you’ve had something exciting happen or that you had a night out and didn’t tell me, makes me feel bad. I would much rather hear your good news from you than second hand or from social media. It’s much more sad and hurtful to find out that something big is going on with you and I didn’t hear it from you!

I know that chronic conditions aren’t always understood. People don’t know what might make your condition flare or what increases your stress. And that’s okay, I personally don’t expect them to. That being said, never hesitate to ask me about my condition. I will always be glad to tell you about it and what impacts it!! I will always be real with you as well! I won’t make excuses to not see you or go to dinner, I promise to always tell you what’s really going on. And please don’t feel like you can’t tell me something because I am sick!! Even at my worst I will still be excited or happy for you. Or help you talk through something you are going through. Above all I am still me, I am just me with an illness

With Love,

Amber

How I Really Feel…….About Chronic Illness & Friendship

So you’ve made plans and were genuinely excited to do whatever it was you planned. But the day comes and you feel like CRAP. You are hurting and battling whatever ailment is most current. And you know there is no way you can make it to said plans. But how do you get out of it without the other person hating you or dealing with the other person judging you? This is a constant battle I think all spoonies fight. Do we follow through with said plans and then spend a week in bed or do we cancel and then deal with the feelings that come from that?!? It’s hard. And it seems like you (or at least I always feel like I am) are always letting someone down. So how do you deal with the situation?

Over the years this is something I’ve gone back and forth with. Do I make up an excuse as to why I can’t go so it doesn’t seem like I’m sick AGAIN?!? Or am I honest, and tell the person how poorly I am feeling and why I really can’t come?!? I’ll be honest, I’ve done both. And neither seem to make it any easier to deal with constantly having to cancel plans. But in the long run I feel that it’s better to just be honest. If you aren’t feeling well just tell your friend/family what’s going on. Then it’s on them. If they want to be mean and hateful about you cancelling plans that’s their issue not yours. You can’t force them to believe that you are sick.

I’ve had it go both ways when I was honest and told my friend I was too sick to make our plans. I’ve had friends be really understanding and offer to bring me soup or ice cream or something I might need. And then I’ve had “friends” interrogate me about being sick. Asking for signs and symptoms and what I’ve taken to feel better etc. I’m sorry did you become my doctor? These are not things you need to know. This is you being nosey and testing me to see just how sick I am. And I have nothing to prove to you!! If you as a friend can’t believe me for what I say I don’t need you in my life.

That’s what it comes down to honestly! If you have friends that can’t take your word and don’t believe when you say you are too ill to leave the house, you don’t need them in your life. Yes, we often have more Infections and have to cancel plans more than most people. But this is not a part of our life we enjoy. If you think we enjoy sitting at home and never getting to go out and have fun you are sadly mistaken. We crave people interaction and having fun just like anyone else. We just don’t get to do as much as we would like. To an extent we are a prisoner to our own bodies. We can’t control what happens from day to day. We just have to deal with what we are thrown and move on. And if that involves having less friends because they can’t understand the life of a person with a chronic illness then that is just the way it has to be.

We have to treasure the friendships with those who care to take the time to understand our lives. Those are the people who we need around us. People who will support us and lift us up even if we have to cancel plans. It sucks enough having to live life with all the illnesses and drs visits that we have. We shouldn’t be questioned and treated poorly when we have to cancel plans. If you aren’t a spoonie but have friends who are please remember that we don’t enjoy cancelling plans and having to stay home. So don’t make us feel even worse by treating us poorly because we have to cancel plans!

Friendship and chronic illness is hard. And it makes me sad to think about the people who have walked out of my life simply because I am sick. People who I loved like family who decided they couldn’t handle my illness. Which seems crazy to me because they are NOT dealing with my illness I am. Yes, things change! I may not want to go out to dinner or to get drinks as often but that doesn’t me that I as a person have changed. I am still the same person who you fell in friendship love with, except my body is not healthy. As many friends as I’ve Lost, I have also gained some of the best friends of my life in the past 5 years. Fellow spoonies who understand what I go through in a week. As well as non-spoonies who are kind and compassionate and understanding. For all the people who stand by me on a daily basis I am so thankful!! I can never express with words how thankful I am to have these people in my life. They help get me through every day and help me to keep a positive outlook. While also being there to listen when I need to vent!! Friendship can be hard but is so worth the fight in the long run.

With Love,

Amber

Medical Research with Antidote

Medical Research is a topic I know I can’t be the only one interested in. Sadly, when you have chronic illnesses like I do, you hope and pray for medical research to be conducted on your conditions. Without medical research, many of us wouldn’t be able to live the lives that we are living. For me and many other Lupus patients, Benlysta (Belimumab) has given us part of our lives back. Without this med I only have a few GOOD DAYS a month, but with it, I have several GOOD WEEKS!!! Lupus isn’t the only condition that benefits from medical research. Any long term illness including, asthma, heart disease, migraines, diabetes, other autoimmune disorders besides Lupus and other conditions like cancer or Alzheimer’s benefit from ongoing research! Benlysta was approved in 2011 after going through many trials and final approval by the FDA. Most recently after trials and research, Benlysta was released in a injectable form that can be given at home which will further imorove peoples’ lives. 
So what exactly is medical research?According to The Nature journal, “Medical research involves research in a wide range of fields, such as biology, chemistry, pharmacology and toxicology with the goal of developing new medicines or medical procedures or improving the application of those already available. It can be viewed as encompassing preclinical research (for example, in cellular systems and animal models) and clinical research (for example, clinical trials).”

Many people struggle to find medical research and clinical trials for their conditions and often have difficulty understanding them due to the complex medical language used. Depending on a person’s condition & location, finding a local trial can be difficult. However, I have recently found and partnered with an AMAZING company, called Antidote. Antidote works to help patients get connected with clinical trials and provides easy to understand descriptions of each trial without all the medical jargon. They have a very easy search function on their website where you search for your condition, provide your location and indicate how far you are willing to travel. The site will then provide a list of open trials for that condition. Currently, there are 69 open trials nation-wide for Lupus alone. Once you put in how far you are willing to travel, the site asks you basic questions to try and connect you with the best trial for you! 

The best part is that this is a free search. There is no cost to search for trials for your condition and if you have multiple issues you can search for multiple trials. If you get accepted into a trial you would only be allowed to do participate in one trial at a time. 

Being part of a trial does seem scary and does have its risks like almost all things medical. Despite this, it is imperative that people participate in this kind of medical research. Without clinical trials, the world of medicine would not advance and treatments would stay the same as they have been for years. If you feel called and there is a trial near you, please at least apply to see if you could benefit from participating. Not everyone who applies for a trial will get accepted, however. I was curious as to how many people would be willing to partipate in research, so I asked a generic question to my Lupus Support Group, “If you had the option to join a clinical trial, would you?” The responses varied. Of the 27 people who responded, 22 stated that they would participate, while the remaining 5 said they would not participate. The biggest reasons reported for not participating in a trial were that it is scary/dangerous, and the amount of time and needles (for IVs or blood draws) involved. 

If you are interested in medical research and write a chronic illness blog and might be interested in partnering with Antidote, please contact me. I have just began a partnership and would love to get the word out and get others involved. I know what you are probably thinking. And the answer is NO! I do not receive any commission or payment of any kind for referring other bloggers or recommending people use the search tool! I am just truly excited that there is a tool like this that exsists and is available to everyone. They may not have your condition listed but they are working on finding more trials for more conditions. I am so excited to share this information with you and as I learn more I will continue to pass along information. If you would, please share this information with people you know or with your communities. We must get the information out about the need for more involvement in medical research so we can advance treatment of chronic conditions!!! If you would like to check out the search tool or the website for my information I will list the website below. You can also find the link on my sidebar within the blog. Soon I will also be adding a page focused on current trials available for conditions I currently have. 
ANTIDOTE WEBSITE: https://www.antidote.me/

LIST OF CONDITIONS: https://www.antidote.me/
Amber 💙
Other References:

https://www.nature.com/subjects/medical-research