We are in it for better or worse..Chronic illness that is

 My weekly update…

I left off last Thursday the 3rd. That night I did my poison meds and then went to bed. Friday & Saturday I spent most of  the day in bed. If you have been on any kind of chemo meds and or Biologic meds, you know those make you feel like shit. Everything in your body aches, some of us can’t keep food down and my body loves to do this fun thing called, internally bleed. Sometimes I am blown away on what we take in order to fight our own bodies. 

Sunday I made it work but was in a lot of pain. My legs have been giving me a hard time. Lately I wonder just how much longer they will be working. I am so afraid that soon, I will not be walking much at all. Just when I overcome one fear, another one takes it place. I know even when my legs stop working, I will overcome it,however right now, it is scary to think about.

Monday and Tuesday were a complete Blur as We tried to numb the horrendous pain I was feeling. I believe my Dr’s are running out of ideas and ways to keep me comfortable. I wish more could be done but I am beginning to think nothing more can be done. My only prayer is that where we are moving to, has Dr’s who truly want to help and that I will be more than a paycheck to them.

I am very grateful though to a few fur kids who always love me through the pain….

As Yesterday rolled around, I finally began to feel some relief. I am really getting tired of this 4-5 awful days and 1-2 good ones. This is no way live.

Today I was able to get up, take care of a few things and I  even made it to work. High 5 to me!!

Your Questions Answered 

This week i received 2 emails that were very similar so I am going to answer them together.

1. I feel alone and I do not know how to express how I feel. I am afraid my loved ones will push me away.  2. I met someone a few months ago who was OK with me being sick, but now he is pushing me away, what can I do to make him stay?

First off even though you might feel alone, you are not. Many of us are going through what you are going through. I do not know your situation however I am available to talk. I know how Chronic Illness can separate you from the rest of the world.  I know what it feels like to not feel safe in my own skin. I know what loneliness feels like. For those of you who might be reading this, the loneliness that Chronic Illness people suffer with is different that just being “lonely.” Many of us have loved ones around and or nurses etc but still feel lonely in the sense that, no one understands what we are going through. It is important to know that just because you are here in the room with us or whatever does not mean YOU GET what we are going through. No one really understands unless you are going through it too. And to be honest sometimes us, the chronic illness forget that the average person does not  “get” it. And that alone causes a lot of frustration for both parties. Often People Retract more when they don’t understand what you are going through and because they do not know how to help you. I believe this is true however it is NOT an excuse, instead it should be a conversation. 

In my opinion the best way to express how you feel is to be honest with everyone involved even if they do not get it. Tell them to research your health condition and then have an honest chat. If the person you are trying to “talk” to blocks you out….move on from them. Everyone has baggage, our health situation is just like someone having 5 kids or 8 marriages or some kind of abuse in their past, etc. I really do not understand why some people can not just accept and love those of us who are sick. People can accept all the other things I mentioned in the last sentence but can’t accept sickness, like it is a deal breaker. Seriously????

As far as “making” someone stay, I hate to say it but LET THEM GO. If you haven’t read my story in the, “all about me section,” please go read it. I know it hurts to go through this but you will come out the other end. Look how strong you ARE, did you forget you are fighting your body?! I know how hard that is! You are a fighter!! Do not let others take anything from you.

Stay strong and know that many of us are fighting just like you and are going through the exact thing you are. Please do not hold all that heartache in, write about, cry about it,talk about it, express your feelings!!! And then move on baby! Like I have said before, it will hurt and you may feel like the world is ending, I mean how unfair life can be..right?! We are battling a fight with our own body that most of us will never win, and then people have to come into our lives and do nothing but hurt us! What the fuck?! I get it! I truly do!!! Sometimes I feel like I did something in another life, something real bad, because why else would 90% of my life be so awful, so scary, so painful, so hurtful? What did any of us do to make ourselves sick, what did we do to make others want to leave? The answer is NOTHING.  You are NOT alone, and when you feel like there is no way out, please reach out! I really love this Johnny Depp quote…

Bitch Section…..

While everyone’s life goes on mine stays the same….it never changes, it is full of pain, grief, frustration, hospital visits, Dr appts, screaming, wanting to give up, feeling alone and feeling scared of what tomorrow may or may not bring. I get tired of people saying they are supportive only to do the opposite. Tired of hearing whispers of “I love you,” only to feel the knife in my back. I am tired of shaking the bed screaming every night while the world sleeps. I get so tired of explaining my health to others, i get tired of faking smiles, i get tired of fighting a fight i am not winning. I might write all the time but I keep so much inside because sometimes it is better to be Silent than have to go into deep detail about how I really feel. Some tears I will never share………….

 

 

Final Thoughts….

August is Gastroparesis Awareness month! This is one of the chronic illness’s I suffer from. Gastroparesis can interfere with digestion, cause nausea/vomiting, problems with blood sugar levels and so much more. There are a few different ways people get Gastroparesis and it affects people in different ways. In my situation, during one of my surgeries, my Dr cut my vagus nerve which paralyzed my stomach(gastroparesis.)

As you can see from my records, 90 min is normal halftime for food to make it from belly to intestines. Mine took 241 minutes. Once I was diagnosed the Dr told me that i would never ever eat solids again because they would never digest. I tried years to eat only liquid foods but ended up starving so I went back to some solid foods. When I eat solid foods this is what happens….this is my swollen belly. This can last for hours until my belly decides what to do with the food I should not be eating. Sometimes I puke up the food and other times i force it through with meds my Dr gives me. Either way it is very painful. Some of us with gastroparesis are very thin because we are all different. Some of us can NOT eat solids at all…PERIOD which make us very fragile and thin, some of us have thyroid issues/other chronic illness along with the gastroparesis which causes weight gain. Usually I am on the thinner side however right now I on a few medicines that make me gain weight. Gastroparesis also affects my blood sugar, which require me to take Glucose.

Side note***PLEASE do not say to someone who has gastroparesis and is STARVING…that they should be happy about how thin they are!!! Trust me when I say they are not HAPPY about starving and being bones. And do not tell someone like myself there is no way I have gastroparesis because I am not thin…..I will shove my diagnosis (shown above) up your ass…….

 

This is my beautiful Friend Cheryl who also has Gastroparesis. She is another beautiful soul fighting everyday to survive. She always amazes with her strength, she keeps going even when I know she wants to quit sometimes! Can you imagine being hungry but can’t eat because it hurts?! Everyone in her life should feel blessed to have her, because she is so special and just like Me, God has a plan for her too….I feel we are cut from the same cloth, we both are sharing our stories and trying to help others. You are a ROCK star Cheryl! Many prayers and love sent your way!!

AS ALWAYS thank you all who support us who are living second by second! Love one another and never judge a book by its cover….everyone is battling demons….

P.S…….

 

Sabrina

Sabrina’s Story

This is me now.
 
June 3, 2016 the day a stark new reality hit me in the face like a hot frying pan, I now have and will have for the rest of my life Rheumatoid Arthritis. At first I thought this can’t be me, not my life, but reality set in and in fact I would now live everyday waking day in some sort of chronic pain. I have been through the stages of grief, anger, hate, loneliness, depression, and so many other emotions that I still struggle with. I miss ME, the one who could clean the whole house and still be up for a hike. The woman that would get in her car and just go for the day. Everyday I miss me, the one thats still inside but my body refuses to let her out. I also go through the acceptance phase where I embrace and find a peace, those days do not come often yet they seem to be good days (weird huh?). With a family, bills, and just plain ole life demands I struggle to find acceptance of this damn disease. I struggle that I do not see my friends like I once did and that hurts, but my body just simple says not today (and believe me those days are more often than not). Even as I lay in bed typing this I have wanted so badly to get out of the house and just go to TJ Maxx to exchange something, I just have not felt up to it and have to work the next 5 days, so its rest and save energy to work and pay bills. 
 
I started this journey thinking I will just tackle everything with natural supplements and diet. Almost a year later and every natural supplement, holistic way you can think of, and with many tears poured I gave into the medication plaquenil. Medication scares me to say the least. It took me years to be ok with taking an antidepressant, because see I also suffer from GAD and I have lived with anxiety/depression since I was 16 years old. With that being said it took me 10 months to say ok to the medicine for the RA. You know the crap that slowly starts to shut your immune system down, because your body is attacking your own body, yeah thats the crap I am taking now. Yes it is the “baby meds”, but to me it’s not at least not at this point in time.The really really crappy part is I don’t even know if it is working yet because it takes 3 to 6 months before showing improvement and there is a chance I will have to go to something stronger. So everyday I wake up and the pain is there some days its mild some days its hard to even move. I do have good days here and there where I get a glimpse of what I used to be, sometimes that makes me cry and sometimes it just makes me smile. 
 
The future, thats a scary place to look into, and YES I have heard a million times “just take one day at a time”. It’s not like I don’t tell myself that and honestly a lot of time I do just that. BUT there are days and thoughts that you sit and wonder what do my days look like 5, 10, 30 years from now. Will I live long enough to see my children get married, have a career, have grandkids. Will I have time to grow VERY old with my husband? Will I be able to travel and see things that I desire to see, will my “bucket list” (boy does that become a reality) get checked off? So many mind swirling unknown questions that only time can answer and I can only have faith and hope to make it that long. Don’t get me wrong I do stop and smell the roses probably more so now than ever. All I can tell you is that from my perspective this has been the most mentally, emotionally, and physically challenging obstacle I have ever been through and I am not one to give up. I take days off, BUT I will always find a way to pick up my sword and keep fighting. Quitting is NOT an option!!