Oops!

Oops!

I totally have been neglecting my blog and I’m sorry.

I haven’t really been feeling up to doing much of anything. I had another fabulous surgery done on my foot.

I have stitches in three very annoying and inconvenient places and it sucks. I cannot tolerate the boot I am supposed to be wearing, therefore, I am in a lace up ankle brace thing. I really hope I can keep infection at bay (is that the right way to say that?) who knows?

I am on pain meds which means I am spacey and sleepy. I went out to dinner with my parents last night and that’s a big woohoo!!

I am with my Mom and Dad with today for Walk to Emmaus training. I am not working the walk but my parents are and Russell is working. Since I am not totally independent yet I came with.

I am really just rambling and writing in a stream of consciousness manner.

Good Lord! Being tired is getting old. I want to go out and explore and shop! I want to be able to work more than anything but as bad as it sounds I am not reliable.

I have tried the whole online jobs work anytime thing and it just doesn’t work for me. There’s zero motivation. Plus, there is absolutely nothing that I have an interest in. If I am not interested I am not going to do it.

I wish I could find a way to make money that I would love doing.

To the drawing board!

 

Missing Services

Missing Services

I just haven’t been going to church. It’s either I had to take heavy medications or I’m not feeling well. I am about to have another surgery and honestly I have given up on going to church.

I tell myself just start over at the beginning of the year. Why not? It’s not like I can do anything about it.

The sermons are recorded and posted online and they are also live on Facebook.

I have no reason to miss out on church. I just have given up.

Part of me says no! No you love going to church and it’s important to you.

The other part says don’t worry about it. You’re tired. Rest and heal. What’s the point? You won’t be able to focus anyway.

It is upsetting but at the same time I am apathetic. I am trying to find a way out. Get my butt up, so to speak, and quit my whining.

Thanksgiving Feast! No Thanks…

Thanksgiving Feast! No Thanks…

I figured I would take this opportunity to share a little bit about this holiday from a GPer.

With Gastroparesis any social event is full of pressure because almost every social event includes food. Many include alcohol.

Many of us cannot enjoy either without suffering the consequences of vomiting, pain, bloating, or feeling just downright miserable.

Some of us can enjoy our “safe foods” but regardless the social situation remains the same. Awkward.

These holidays are zero fun for us… even more so because we want them to be tons of fun and lots of energy too! We get exhausted when we want to be in the middle of it all.

For me the feast visually makes me nauseated. Seeing so much food has always been a problem for me since I was diagnosed. I think at first I didn’t buy the whole smaller portions more frequently plan… I just wanted to love food the way I always had.

Nothing is as it used to be. I serve my meals on toddlers’ dishes.

When our families decide to pile high tomorrow we will just have to breathe in and breathe out. Hope to God we don’t need to run to the bathroom and hope we make it in time or need heavy duty medications. Sometimes we will push ourselves because we crave it or because we want to make our family happy or we want the awkwardness to go away.

Please try to be understanding of your loved ones who suffer when events surround food and beverages.

I pray for my GP family that they have a bearable holiday. I hope and pray we may have a good one.

Happy Thanksgiving y’all!

Come One Come All

Come One Come All

Last night, I went out with some friends from church and we went to Miller Outdoor Theatre to go see Elf.

I am used to going to The Cynthia Woods Mitchell Pavilion…which is crazy busy for almost any event.

The thing both of these places have in common are their lawns. They have some traditional auditorium seating that is covered but most people love the lawn. Bring a blanket or rent one of their chairs for the lawn. That’s where it’s at.

I have not seen so many adults and children come to see a movie outside. It was super cool!

I AM SO TIRED AND SORE!!!

Russell had to work and that meant me going it alone. At least until I got there and met up with my friends…

I am paying for it today but my friends… I choose to live my life! I can’t always be afraid of the punishment that my body will hand me. I may pay for it and I may lay in bed the next day for the most part but I lived!

 

Being A Good Patient Part Deux

Being A Good Patient Part Deux

I am free!!!! No more antibiotics! No more PICC line!!! No more daily trips to the infusion center!!!

I am free!!! Well, mostly. Now I need to discuss with my podiatrist the next steps. (Haha! See what I did there?)

That’s where I am headed right now as a matter of fact.

I am allergic to adhesive and while I had my PICC line, for six weeks, it’s covered by an adhesive dressing… I did my best not to scratch. I did really well until the last four days. Then I was going crazy. I had to drug myself with Benadryl just to kind of help me cope.

I would have much rather have just pulled it all off but I know better. Hence the title of this post.

I have this horrid rash and welts and awfulness that I now have to treat (not my first time) until it heals. This is a very long process. Adhesive breaks my skin down. Fast. So I now have to wait for my skin to produce new layers. Enough new layers for my skin to be healthy again.

Just to give you an idea the skin that comes off your body and helps create dust…that skin has been working it’s way to the surface for 7 days. Depending how damaged the skin cells are depends on how quickly you heal and shed off that damaged skin.

Sorry if that was gross and too much information.

My point is I am trying not to scratch because it can introduce infection and takes way longer to heal.

Can I just take a moment here and thank God for the gift of Hydrocortisone?!

Thank you, Lord for hydrocortisone!!!

Back to the podiatrist.

I am going to get a consult on going forward with the procedure that was planned and then staph was discovered and interrupted that plan….

We will also have to replace my ligament replacement because the staph infection ate away at the original replacement.

Note: haha! Replace the replacement. Also, see how I said we as if I am doing the surgery with him!!

Sorry, that totally cracked me up.

That’s pretty much what is going on as of late.

When Does It Stop? 

When Does It Stop? 

Tonight we had our small group meeting and we were talking about how we become hindered in our faith. 

How we’ve had to persevere. 

Of course I shared when I was told by my doctor my options were feeding tube or die 5 years ago.  (That sounds really harsh but that was the gist of the conversation and I told him not to sugar coat things). 

It has brought up the same feelings of not finishing college and my life not being the way I had always dreamed it to be. 

A lot of the answers were college. And yes that is something to be proud of and I don’t want to make that seem less in any way. That takes crazy amount of perseverance. 

But sometimes no matter how determined you are for something does not mean it will happen. 

I am grieving the same things I thought I had moved to the acceptance phase of. 

It hurts and it’s hard. Especially on the mental health. 

Thank God I have amazing new friends to be there. Our relationships are still new and building but I really love the opportunity to build such a close knit circle. 

That’s all for tonight but it was something I needed to get out. I keep asking myself when does it end? 

Visit Again

Visit Again

I have been backing up my 70 plus blog posts because well I have failed to do so up until now. I know. I know. Bad Abbey.

I have also gotten in the bad habit of just posting directly to my site instead of doing what my original plan was. Which was to type it out into a document and then copy and paste then click publish and voila! Something for you to read.

That way I don’t have to do the back up part. It’s already done.

Anyway. I am a huge Grey’s Anatomy junkie. I have started watching it from the beginning again.

It is amazing to me how things change. How things hit you differently as your life happens. When I watched one particular episode… called Break on Through (I think it’s in season 2) there is this part about end-of-life care. It’s a sad and difficult topic. Something not easy to watch… it’s heartbreaking.

It is devastating to experience. Once you experience a loved one passing. Especially in that way you never forget it. And I mean never.

So when this episode played my heart broke. For just a moment, that seemed like an eternity, I couldn’t breathe. It seemed like that moment happening all over again. Everything ached. I mean ached with sorrow.

It is crazy. I have watched this episode twice now. Each time was a different reaction. A different experience.

Television can do that!

The Bible can do that!

Books can do that!

How crazy awesome and scary is that?!

My blog posts are still not completely done. I will have to continue doing that. 70 is a lot!

What do you think about seeing something two separate times and it hitting you differently as your life changes?

When You Don’t Have A Choice

When You Don’t Have A Choice

Hi folks! Things are peachy keen for the most part. 

I am almost done with the IV antibiotics!! 10 more days! Then oral antibiotics…. 

That’s where I don’t really have much of an option. I am going to try it out. Try not to have this predetermined outcome. 

It’s hard though. I need them to get rid of this infection. I need it to go away. To never come back. Which staph likes to do. Hence the reason for all of the medicine!!! 

I know how my body reacts to antibiotics. Maybe I will just switch to 20 hour feeds until I am done with this nonsense. Who knows? 

This is hard. I know it’s a battle many of us with Gastroparesis in particular have to deal with. 

But the constant consequences for each thing you do. Brush your teeth. Shower. Get dressed. Leave the house. Drive. Eat. Don’t eat. Taking medication you have to but it makes you miserable. Going out with friends. 

Those little things. They have the biggest consequences for us Spoonies. There is nothing that we can do but try to manage. Pick and choose wisely. Or just say screw or all together and go out and have fun for once. 

We know we will pay. That’s our choice. 

We have some things though… that we don’t have a choice in the matter… I know some that do not have cancer but must go through chemo. I know how much this community hurts. Especially when they must choose between life and death. 

Until next time…

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.