Being Validated By A Doctor

Being Validated By A Doctor

I have not had the misfortune of a medical professional telling me it’s all in my head. 

Unfortunately, I know too many fellow Spoonies that have. 

Being told that no it’s not in your head and we will figure this out. Give you answers. At least some kind of clue is so much more than some may think it would be. 

As you know, I have been fighting a Staph infection. I am on the antibiotic called Rochepin. 

I went for a regular follow up with my cardiologist and told him what has been going on recently. He just nodded his head and then after I was done talking he asked how I was feeling. I was honest with him and told him I am more tired than more normal tired and feel like my system has been hit by a train. I can’t imagine what people that have to go through Chemo treatments feel. 

He paused. He told me of course you feel like crap. Rochepin is not a baby antibiotic. It is hard core. Your are going to feel this way. He said your system is already weakened from all of your other diagnoses but mainly Gastroparesis because you get starved of the proper nutrition. Then the Rochephin kicks in and well you feel even more horrible. 

I just wanted to share this moment and show that it’s not always horrible for me. It’s just not fun. 

Until next time….

Bad Mental Day

Bad Mental Day

Today we (Russell and I) had our small group meeting. 

We go over what we though about the last couple of sermons and each other’s weeks and eat. Fellowship type stuff. A lot of discussion too. 

It was good. I want to get to the after. 

It’s pretty late. About 9:30. By the time we get home it will be 10:30. 

I got quiet afterwards and after Russell and I had a bit of a disagreement on whether a place existed in that particular location or not. 

I begin thinking about a lot of things but one I wanted to share with you. 

*Abbey, you should have just kept your mouth shut. Why do you even talk?*

That’s what I have been thinking. I ramble. Especially when I am nervous but in general I just flat out ramble. 

I have been thinking that I have nothing to contribute. That I talk in circles. 

I volunteered to read a passage we were going over. I know I had to ask multiple times what verses we were reading. 

Then as I am reading them I am stumbling because I keep having to remember where I am supposed to stop. I keep second guessing if I am reading from the right spot. It turned out I was but that didnt get rid of the anxieties and frustrations. 

I know without a doubt that the particular place has a store at that location. I know I had to ask at least twice about the passage. I know these things. 

Then I start second guessing it. Is it in my head? Am I imagining this? 

Also, when everyone talks about there week I have nothing to say. “Oh, I finished season 3 of such and such show and I slept like a million hours but I am off my pain meds” (that was said with sarcasm and a lot of truth). 

All I have to talk about is medical this and medical that. 

I don’t have a job. I wouldn’t say that I have a social life. Although, small group is helping. 

I don’t know why I do things. I feel like I have zero social skills. I just ramble. 

I get new people to be around and all of the sudden I am that kid in that group that people listen to but don’t think of them as really part of their group because they just talk too much and most of the time this kid is just talking in circles. On one subject. 

I hate the words “Actually I’m not working right now, I am applying for disability”

I hate that I think to myself that I should have kept my mouth shut. 

I hate Gastroparesis, Irritable Bowel Syndrome, Bi Polar Disorder, Generalized Anxiety Disorder, Chronic Migraines, and most of all I hate the isolation I feel. 

I hate the jealousy I feel when people talk about work or their plans. 

I hate this Staph infection. I hate this cast. 

I hate the random pain I am in even without the surgeries. 

I hate that when I look in the mirror I see the light has gone from my eyes. 

Relationships and Gastroparesis 

Relationships and Gastroparesis 

This is my experience and my experience alone. I will not claim to write for other Spoonie relationships or their experiences. 

I was diagnosed after high school. My freshman year in college to be exact. 

I had been dating a guy who I was totally infatuated with. Maybe it was more the idea of him than him but I don’t know. It just played out how it played out. 8 months into dating I was still figuring out why I was losing weight and feeling horrible. He was super supportive of the gluten free diet I had to be on. He proposed. I said yes. (Why aren’t you married then, Abbey?!) 

We dated while he finished his degree. At one point I received my official diagnosis. That’s when he went from being super supportive to being as supportive as he could it just wasn’t what I needed. I truly believe that he cared for me. Things just didn’t work out. We weren’t meant to be together forever and it actually ruined a lot of my other relationships in my life. 

I broke it off a little over three years ago. Now here comes another strike in the relationship book. I don’t know what I was doing or thinking but I started talking to someone online. He was really sweet. 

I had gotten sick as usual and was talking to him on the phone and he had the privilege of listening to me vomit non stop for a good five minutes over the phone. I went to the ER that night and Mom and I had been awake for 36 hours. He stopped in a brought flowers. It became like this relationship that moved way too fast and he proposed two months in. I said yes. Do you see a pattern? Not yet? Just wait. 

After that everything went to the pooper. He had Asperger’s. I accepted it. He was so sweet. I want prepared or equipped to be in such a relationship.  We reached a point in our relationship where there were disagreements and arguments. We could never work them out together so it just built. I finally couldn’t take it anymore. It was making me physically ill from all of the stress. I broke it off. Now there’s a pattern but wait there’s more! 

Not long after I broke it off with the last one I started volunteering at church. I decided I was done with the dating thing for a bit. 

Ha! I am sure you are laughing with me right now.

Someone I had grown up in youth group with was also helping out.  We went to different schools we probably exchanged a hello or two but never hung out. 

I totally friend zoned him right offf the bat. I was really comfortable around him but I wasn’t dating anyone. He didn’t have any intentions to start dating anyone. 

I will tell you our how we started dating story in another post. 

Anyway, I learned that my previous experiences with relationships were false. Well maybe not false but it was not going to be the status quo. 

My experience is totally the opposite. I won’t get all gushy even though I am sure some of my readers would love that…maybe in  another post. 

Until next time…

P.S. Did you find the pattern in my not so great dating choices? 

Let’s Get Real About Brain Fog

Let’s Get Real About Brain Fog

Brain fog: Clouding of consciousness, also known as brain fog or mental fog, is a term used in medicine denoting an abnormality in the regulation of the overall level of consciousness that is mild and less severe than a delirium. The sufferer experiences a subjective sensation of mental clouding described as feeling “foggy”.

Thanks Google and Wikipedia… one of my points being proven right here. I couldn’t come up with the words to define brain fog in a coherent way. Now that may just seem like a normal thing but it goes deeper than that. 

Just now I had to exit my blog. Switch over to google and sit there for a few seconds and try to remember why I was staring at a google search bar. 

It is so incredibly frustrating. 

It takes every ounce of me to semi exist in a social setting. Never mind when I am on medications that make this fog worse. 

I resort to being on my phone most of the time. It’s easier than having to try to keep up with a conversation that most of the time I get lost in anyway. 

I was at lunch with one of my really good friends and Russell. My oldest “brother” and Russell get along really well. Both of my brothers do actually. The oldest, M, happened to be in town and we met for lunch. I always look forward to these lunches because I hardly see M and being chronically ill makes it difficult to go see him on my own. I have to depend on other people’s schedules. 

So Russell, M, and I are sitting together eating lunch. I began to feel really left out but didn’t say anything because I love that M and Russell get along so well and have so much in common. 

I am beginning to see that other people are not the problem. They are not the reason I feel left out. I am. 

I’ll let that sink in… mostly because it really hit me hard. 

My brain can’t keep up. It’s tiring. That’s why I’m absent. The more I see it (when I can actually think straight) I know that I am probably the worst person to have a social lunch with. 

If it is really important. Like a friend wanting to vent or get advice I usually can focus but if I can’t then I tell them. 

I try to be honest but I know now why social activities are just as difficult as the physical ones. 

This breaks my heart. I feel like there is one more thing that has been taken away. 

It just seems never ending. I have tears in my eyes as I write this post. The posts that are the most difficult for me emotionally are the easiest to write. I don’t lose track of what I am trying to say most of the time. 

I hate how the brain plays tricks on you. 

Brain Fog. I have to write everything down. Then I have to remember to check it. 

I used to forget if I had taken my meds.  So sometimes I wouldn’t get them or I would get them more than once. 

I have a system in place now but brain fog is no joke. I am 24 and have a crappy memory and I can’t focus for very long. I do puzzles and crochet and keep my mind active but it doesn’t seeem to make that big of a difference. 

So next time I see you or if it’s the first time we meet and I seeem distant or disinterested that most likely isn’t the case. 

Please try to be understanding. I know it’s my fault. I am trying.  

Until next time…

Trying To Be A Good Patient

Trying To Be A Good Patient

Oh my! 

I have more than 4 weeks left for antibiotics and being in a cast. 

When you know your body and are in tune with your entire existence being a good patient is hard. It’s harder when you live in doctors’ offices and you practically have your MD via osmosis. 

I have my opinions but I know my body. I know I cannot tolerate antibiotics orally. Which is a pain. I know that there are two  types of narcotic pain medication that works for me. 

I wish you (the doctors and nurses and other healthcare professionals) would just listen to me! 

I understand they go to school for a long time and work very hard to get where they are but the patient may actually know what they are talking about. So hear them out. 

The doctor that did the surgery to clean out the staph infection from my ankle wants me in a cast for 6 weeks in hopes to build up enough scar tissue in my ankle to avoid another surgery to replace the ligament. 

Here’s my problem with this. I know the ankle stability is there for the most part. That’s great! I know that is the goal with this whole casting process. Now, the whole reason I went to my podiatrist is because I was in pain. The previous ankle surgeries didn’t help. It failed. There were hopes of building scar tissue there as well. It failed!!

When I had the surgery to replace my ligament the pain was gone. It was awesome. I know for a fact I will be going back to my podiatrist and having the surgery redone. 

Listen to your patient. It makes it easier for them to comply with your treatment plan. Take into account what they are saying. 

It drives me crazy when I get a doctor with a surgeon’s complex. 

They know it all. They are in and out. We have to advocate for ourselves but what good is that when the healthcare professionals have the words of the patient, who knows their body better than anyone else, go through one ear and out the other. Or it just doesn’t even register. 

I will comply with the 6 weeks in a cast and the antibiotics. I feel that the casting process is fruitless but we shall see. 

When you are a Spoonie being a good patient is so difficult sometimes. You know too many different solutions for problems and they are safe to do and you suggest them to a healthcare professional and you get blown off. 

Are we encroaching on their territory? 

My podiatrist understands that there is one pain medication that I can get from the pharmacy that works. 

This other doctor “couldn’t prescribe that” but he could give me something else that causes my to double over in pain (which isn’t that the opposite of the entire point of pain medications) so I went to my podiatrist and asked them if I could pretty please get a refill. 

He thinks being in pain is silly and unnecessary. I happen to agree. 

Until next time… 

Gallery

How Chronic Illness Changes You Over Time


Okay, so you may be wondering why I have posted this gallery of photos. I was looking through my pictures and they are so different. You would expect that because as time goes on you get older and your tastes, likes, dislikes, whether you wear makeup or not, if you decide on glasses or contacts…. We change.

I noticed something else though when I was going through these pictures. The very first one was taken either my junior or senior year in high school. I am leaning more towards my junior year but I am not going to look at the metadata… that’s not the point I am making. I was probably about 17 in this photo. I have always been tiny and thin. Always.

As we go through these pictures I encourage you to look at my face in particular. Maybe even more of a focus at my eyes.

At 17 I was invincible. Weren’t we all? I was not “sick”. I had not been diagnosed with anything other than being underweight. Nothing was really holding me back from doing the things I loved.

My next picture I had recently been diagnosed with Bi Polar Disorder and Gastroparesis. I know I am hiding behind sunglasses and a target but from what you can see I am really thin. Somewhat hunched over (my body hurt all the time much like it does now) and that is when I noticed things changing. Not only my whole body but my eyes in particular.

The following photos are all post diagnosis. When I look at my eyes in pictures now I see exhaustion and a look that says I really just want to go lay in bed.

It is amazing what you can see on someone’s face by their expression. I am truly happy in all of these pictures but I am so tired. I can just see on my face the fun I am having but how hard I am working to make it seem like I am there. Like really there.

I think there is always part of me that is somewhat absent these days. Being a spoonie is not easy and it shows in pictures. I didn’t really notice it until recently but I bet I could do that first photo again… It would not be the same. I am older of course but that light that screams energy and a carefree attitude would not be there. It seems like I am looking through the camera lens… like there is no life in my eyes. Maybe that’s something I could change but I think that it just comes with it… with being sick… with my body having to work so hard just to be…

I wonder if my fellow spoonies have noticed this too? That pictures before we got sick had a different light to them.

I will continue to take selfies and what not but I know they are so different now. I think I am okay with that.

All part of finding my new normal… yeah?

 

Until next time….

 

 

Oh How I Love To Sleep!

Oh How I Love To Sleep!

Okay y’all we are going to talk about sleep. 

You may be thinking to yourself why am I reading about sleep and what about sleep? 

Well I am a HUGE fan of sleep. I think I could be a professional in napping. Seriously guys I love my sleep. 

I always have even before I got sick. I have always been the type to need like 9-10 hours of sleep to be a pleasesnt person. 

Now I feel like I could sleep a good 16 hours a day and be good. The problem with that is I get nothing done! Nothing! 

So in a world of go, go, go I have to find a way to slow down and prioritize what needs to be done that day and what can be done tomorrow. 

I nap. I nap a lot. In the car (if I am not driving. Safety first y’all). In the waiting room. Waiting on the doctor in the exam room. And wherever I can catch a snooze. 

This is how I can function day in and day out. Sleep. 

I run into the problem of not being able to sleep because I am too nauseous or something is aching or something else going on with my digestive system. At this point I am useless. I am laying in bed binge watching Netflix because I don’t get the sleep I need. I fall asleep here and there through out the day and I get nothing accomplished. Other than maybe finishing season 2 of Gossip Girl. Haha. 

It is crazy how much sleep rules our lives normally but when you have a chronic illness… sleep seems to be the greatest treasure you have ever found. The greatest experience. 

I won’t speak entirely for the Spoonie community but I think we all feel that we will never feel rested. No matter how much we sleep. 

People have said “Well you need to get out more and be active. Get a routine going and that will help too.”

My answer to that is this: I can be active but I pay for it in the coming days. My life is nothing but a routine. When to take medicines. When to set up my feed and when that ends. Cleaning the extension lines. Doctors appointments. 

There is only so much one can do when they are chronically ill to help the need for sleep. 

Sometimes we just need to sleep. Period. That is how we take care of ourselves. Just like taking a pill or supplement. Just like if we went a holistic/homeopathic route to treat something. Sleep is part of that. 

Yes, sometimes I need to get my butt up and get going but there is a delicate balance when you have a chronic illness. 

Until next time….

When Things Don’t Go Your Way

When Things Don’t Go Your Way

Goodness gracious y’all…

I know it has been awhile since I have written and let me tell you it has been hard to want to.

This past Monday I was headed in for surgery to get a couple of things on my left foot all fixed up. 48 hours prior my ankle that I had the ligament replacement on really began to hurt. It got all bruised (see my post called A 55 Pound Dog) and was really painful. I thought it was just because of the dogs jumping on my ankle.

It continued to get worse over the weekend but I decided I would have my doctor take a look once I got to the surgery center Monday morning. I couldn’t walk on it and that really should have been a hint to go to the ER Sunday night.

I was put under general anesthesia and he found an infection so he told my parents to take me to the ER for IV antibiotics and see what was going on. They took a bunch of blood and all of that jazz.

I was admitted to the hospital not long after that. That night at 11pm I was taken into surgery for them to clean out the infection. They applied a wound vac and left it open for 24 hours to drain.

GROSS! Am I right?! The next day really early in the morning they scheduled another surgery and in I go… Clean out number two…

Turns out I have a Staph infection that thankfully did not make it’s way into the bones but filled my ankle and foot joint and was eating away at the material that replaced my ligament. Turns out that it made it into my bloodstream as well… That material was removed and after lots of waiting for cultures to come back I was discharged.

I have a PICC line for antibiotics which I get infusions of daily for the next 6 weeks.

The doctor wants my ankle completely immobilized for the next 6 weeks in hopes that my body will build enough scar tissue to create it’s own ligament.

This is not what I planned. I am bummed and bored and kind of in pain… in more ways than a pain pill can fix…

I thought 4 weeks recovery for the other procedure was doable. This is a whole new ballpark. This is not something I am familiar with. Not something I know how to deal with. It just is…

Until next time….