Worse than I expected

Yesterday, I had a total hysterectomy. The plan was to go in, take the uterus and tubes, and excise any endometrial tissue. It should have taken about two hours.

The best laid plans are put aside when you have an amazing surgeon who finds a lot more stuff wrong and actually works to fix it. My two hour surgery turned into a six hour surgery.

I previously had a GJ tube. Because of this, there was scar tissue. However, rather than normal scar tissue, my surgeon found adhesions on my stomach that were pulling it right and stretching it out on the abdominal wall. No wonder my stomach has hurt so much. God bless my surgeon because she fixed it. She also fixed my feeding tube scar.

Next, apparently my liver hemangiomas have grown significantly in size and are now cavernous. They are so large that she had to call in a surgical fellow to determine what to do. For now, we leave them alone. I’ll be speaking with Vanderbilt GI about doing a new MRI on those guys.

She also had to detach my uterus from my bladder. I’ve had significant bladder issues and this seems to be why. After, a cystoscopy of the bladder was done. Thankfully there’s no interstitial cystitis but my bladder is a wreck currently.

There was significant endometrial tissue behind my uterus into my intestines. This was excised. The uterus was removed. I had a TAP block done.

I have six heart shaped gauze on the six incisions across my abdomen. My surgeon is such a wonderful lady.

Unfortunately, upon waking, I was in severe pain. I have never been in this much pain after surgery. I screamed and cried. My bladder was irritated and I constantly felt the urge to urinate. However, pushing to urinate hurt so much that I almost passed out and I threw up numerous times. We just could not get ahead of the pain.

My awesome surgeon had staff bolusing morphine and dilaudid and finally had me hooked up to a morphine PCA pump along with scheduled oral morphine. I was grateful to finally have relief by about midnight. The time up until that is a blur of trying to get on top of the pain.

Today, I am still in a good bit of pain. I’m getting ready to go home this afternoon so the PCA pump has been discontinued. I can feel the pain starting to get out in front of the medication. I am worried I won’t be able to catch up and get ahead of it.

I definitely did not expect the intense pain I’ve had with this surgery. Because so many extra things were done there was a lot more to recover from. And the TAP block only partially worked thanks to my hEDS. So that’s unfortunate.

However, my surgeon is very optimistic that this surgery and the extra procedures she did are going to really help the chronic pain I have. Hopefully I’ll even be able to reduce the amount of medication that I take regularly.

For now, I’m just going to focus on getting through today without screaming.

So maybe I get overwhelmed

I tend to have ideas for projects I want to do when I’m bored and stuck at home. Blogging is one of these ideas. However, then I get a really bad flare of whatever-the-fuck, and I don’t even look at this blog for a month.

I’m okay with that.

I had a really bad bout of nausea/vomiting/food intolerance for 3-4 weeks, including almost a week of that where I couldn’t keep anything in at all so gave up. I got fluids and had labs done. I saw my GI doctor’s NP at Vanderbilt. And she mentioned going through the ER and the possibility of another NJ tube.

So I went home. I went quickly, with promises I’d go to my local ER to get fluids. And I got angry. And I tried to force down food and fluids on the way home. And I vomited a lot.

I kept trying.

I’m one of the lucky people who’s flare eventually calmed down. I have managed to avoid getting another tube…for now. I’m still vomiting quite a bit. I’m still nauseous around the clock. But by golly, I don’t have a nose hose.

I’ll take it.

I’ve learned from the neuromuscular visit I had that my small fiber neuropathy is basically wreaking havoc across my body and autonomic system. I learned that if my right-sided stuff gets worse I’ll need MRIs to search for possible issues.

I also saw a urologist and am taking meds for bladder issues. Then my gynecologist said I have endometriosis and need surgery.

The hits just keep coming.

I’m very tired. I’ve been spending my days in my house and in my room. I had an idea to start exercising that has yet to happen. I keep thinking of places I should take my kids. I do about 1/10 of what I’d like.

Obviously, I’m likely depressed. And this post has been full of wallowing and self-pity. But I guess I feel a little better. And isn’t that why I started this damn blog?

Will You Be My (Passive Aggressive) Valentine?

Valentine’s Day. I got my obligatory card from my husband last night.

Sometimes it feels like he doesn’t put forth effort into gifts or gift giving and always grabs something at the very last minute. The Christmas present I got this past Christmas didn’t arrive until January because he waited so long.

I don’t know why I feel like gifts are important. Maybe because I put forth a lot of effort to get him something I’ll know he likes. I don’t know.

Instead of dealing with my feelings I’ll just be passive aggressively bitchy for the next few days. Because that gets something accomplished.

Nothing changes unless we force the change. I have been a passive observer to my life for long enough that I’m embarrassed of it. And sad. I’d like to feel like I’m a victim to circumstance but I created and allowed the situations to continue.

I woke up and said no more once in my life. I was married once before to a tiny man with a Napoleon complex. He derived his joy from controlling the people in his life with emotional terrorism and psychological abuse. I became a shell of myself for far too long during that period. I developed really damaging and unhealthy behavior patterns and coping skills. Toward the end of the marriage, I wished for death just to be away from him.

With that divorce, I thought I’d be free. But my ex-Husband tried to use our children as a weapon and threatened to try to take them from me wherever I didn’t let him have his way. So I went along with whatever he wanted. I was broke, couldn’t afford a lawyer, and afraid. I still had my children the majority of the time because he never actually wanted to have them or take care of them, he just didn’t want me to have them.

Eventually I finished a program for my nursing license, as fast as I could, and I quickly got a lawyer. I had done our whole divorce pro se, and the agreement we had was terrible. I wasn’t allowed to live beyond a 100 mile radius of where little Napoleon was, among other things.

So, I got a lawyer. And I learned quickly that he never actually wanted to spend the money on lawyers or court. By this time, I think he had a girlfriend and wanted to move away. I took advantage of this situation and had my lawyer draft a new custody agreement, far more in my favor, for him to sign. He didn’t even read it. Just signed. Later, he’d realize he had fucked himself. But it’s what he deserved. He terrorized me for far too long.

On another day, I’ll write about my current husband and how I learned  to find my voice more, to make my far off dreams a reality, and to stand up for myself at times because of him.

But I’ve also gotten a huge lesson in how the wheel of life just keeps coming around. About how the care taking we did as a child rolls right back around to be the care taking we do as adults. And how we slide back into the role the way we’d slide into a well-worn glove. Ka, as Stephen King’s gunslinger, Roland, called it.

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The More Mundane Valentines Things

I got a hair cut and color to celebrate the day, I guess. Mostly it was me using my last bit of energy to get a color that was easier to manage. And bangs. I do that now and then.

My skin is not the best color in this picture. I was at the end of my energy reserves at this point.

I continue to quickly drop weight as I am still unable to hold food, and barely liquids, down. My intestines are still not moving. But, I am not in dangerous territory yet, and I refuse to go to the hospital until I am worried I might die. I’ve had too many poor experiences receiving very little help because they don’t always know how to handle complex cases.

For the rest of Valentines Day, I’m going to cuddle with my 2 year old and we will watch cartoons. That’s something I’d much rather do anyway.

You can never be too rich, too thin,or too tan…

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In which I discuss my upbringing:

The title is something my mother actually recited, advocated and believed in for the entirety of my formative years. Actually, I think she may still be a firm believer in this phrase. She has also, in her 50s, transformed into a firm believer in the “bootstraps” mindset and that no one should receive any assistance of any kind from anyone, especially not the government. This is coming from a woman who was raised by parents who gave her everything and allowed her a place to live and support whenever her life fell apart, even after their deaths. But I think that must be the case with all of these folks who don’t believe anyone deserves anything. It’s because they have never truly gone without.

I could go on for ages about narcissist parents who turn you into a crazy ball of co-dependent as an adult . . . in my mother’s world she is never wrong, is allowed to say and do as she wishes no matter the effect on anyone else, and if you say the slightest thing wrong to her or do something she does not like you endure a wrath and fury like no other. Not to mention the old diatribe of how she never does anything wrong to you and all she has ever done is try to help you and basically break her back for you. Funny, I’m pretty sure I mostly raised my sisters . . .she has also told me as I’ve been sick that medication is basically evil, I should try not being sick, maybe I’m just stressed out, and I should just not have surgery if it messes with my intestinal motility. Because, you know, I can control whether or not I have to have a procedure done.

The times I have dealt with mental health issues I have dealt with her denial and disbelief of the medical model and telling me I am crazy and that taking psychiatric medications makes me crazier, so I should never take them. This has created huge hurdles for me in getting any type of therapy or psychiatric treatment. I was very depressed as a child and never received treatment until I ran away from home at 17. Even then, my mother took me out of treatment after a week. I was also sick a lot and had stomach issues and never got treatment. As a teenager (19), I sat on my mother’s couch for three months, did not bathe, and wanted to die–and no one thought that maybe I should be in a hospital setting. I have a constant battle with myself of whether to take care of my mental health or to just ignore it because obviously there is something wrong with me if I think I have a mental illness. According to mom, I should just “stop being depressed and make myself happy.” And don’t dare take medication. Not for psych issues…oh, and not for pain either. Because that’s evil, too…in her own, expert, Dr. Google opinion.

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This is the person who called me a “fat, lazy pig” as an eight-year-old and who still thinks she can spank my children with whatever object is laying around. And yet, as children often mother is our only constant and so no matter how she treats us we want so much for her to be near us and to love us the way she is supposed to. Looking back it is immeasurably sad. Children fiercely love the mother they have, even when she is toxic and damaging to them. There is obviously so much trauma from being a child that I have just let sit and marinate and have not processed well. Instead, I tend to just explode or go silent. I can not talk to someone for years. I haven’t spoken to my dad’s mother in 14 years . . .

My dad. What is there to say about an absent alcoholic who came around sporadically when he could and later became a heroin addict? He died of an overdose when I was 22. Growing up, we would visit and he would get drunk and talk about how we no longer loved him because we had a step-dad. We were in single digit ages at that point. In my later years, he would get drunk and we would fight, both verbally and physically. I became a parent to my sister at a very young age because of his alcoholism and inability to parent. I later became a parent to him and would pick him up from bars when we would go visit. I was so happy when I got my driver’s license. It meant that when we visited him, we no longer had to ride with a drunk driver. In spite of those things, I think my dad loved us. He just loved his addictions more and was incapable of seeing beyond them. I know we loved him. Even in my anger I desperately wanted him to be the father I deserved. And so I oscillated between hero worship and romanticizing who he was to utter hatred of his existence and pathetic excuse for being a father. He was such an intelligent man with a wasted life. In death, I still took care of everything, even previously mentioned grandmother. I carried out wishes that I think were not actually what he wanted but went along with them anyway because I am also a peacekeeper. Alcoholics forever need to be taken care of and I’m a class A caretaker.

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These were the largest influences in creating who I am today. I wish I were better at moving past what these things created in my behaviors and coping skills. I wish I were better at confronting problems and not internalizing everything. I wish I did not feel the need to fix everything all the time. I wish I loved myself more and felt the need for everything to be perfect less.

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I wish, I wish, I wish . . . but that’s how life goes, right? We are always wishing for something that was better.

Aren’t we?

It was not my best idea…

I work as an RN. Obviously I am out on leave right now but I do work full time in the psychiatric field. I love it and hate it but wouldn’t do anything else.

Because I waited until almost 30 to finally get my ass in gear and finish up school, i have been doing school non-stop since then. I got my ASN, then my BSN, and now I’m working on my doctoral degree to be a psychiatric nurse practitioner. I’ve maintained above a 3.6 this whole time (my undergrads were summa and magna cum laude). I am tired.

I am so sick of school. I am sick of not reading for fun. I am sick of discussion boards. I am sick of teachers that really suck at making tests. I think I should have stopped at my bachelors degree. And then I remember, floor nursing is hard physically and mentally. I can handle the mental but my body cannot take the physical much longer.

On that note, I am down 8 pounds since 2 weeks ago because I cannot eat and can barely drink anything. Who would’ve thought I would be back here 2 years later? This is not what I want my life to be. I am angry at being a chronically ill person who cannot seem to manage her diseases.

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I am angry at not being in control.

Things change and stay the same

On Halloween in 2015 I got incredibly sick and went to the ER. Nothing was ever the same after that. I ended up being diagnosed with gastroparesis in January of 2016 after months of being sick and unable to tolerate any food and hardly any liquids.

But the doctors here still had nothing to do for me. Their medications failed and the nurse practitioner I saw here told me to “eat ice chips.” I was in her office, covered in a blanket, barely able to walk, and had lost 20+ pounds in a month.

At that moment I told her she needed to figure something out because I would die if she didn’t. Thankfully, my mother-in-law was there to back me up. I got a referral to go to Vanderbilt the next day.

I drove myself the two hours late at night at the beginning of a snow storm to a hotel in Nashville. I could barely navigate the room or the will to keep going.

I visited the doctor who would later become my hero at the Digestive Disease Center the next day. I was admitted following that appointment and my mom stayed with me for 6 days at Vanderbilt.

This was when I got my first feeding tube. It was a long 1 1/2 years with the tubes. At first I had an NJ that had to be replaced 3 times and was torture every second I had it. But I had nutrition. From there I got a GJ tube. This tube was supposed to help me drain my stomach and provide the nutrition I so desperately needed. It never worked that way. My intestines absolutely hated the tube. I didn’t know then that my nervous system had gone haywire.

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After a year of tubes not working, in desperation I asked my GI for a referral to Mayo Clinic in Rochester. At this point I’d researched so many things because I just knew that something had to be causing all of my issues. And I was right. In Rochester I was diagnosed with hypermobile Ehlers Danlos Syndrome, autonomic dysfunction, small fiber neuropathy, a disorder of the rectum and colon that makes it really difficult for my intestines to work (thanks nerves!), and information for other things that needed to be explored. One of those things ended up being POTS. Another is a suspected neuromuscular disorder that I will get evaluated next month.

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In October of 2017 I was able to have my GJ tube removed. It hadn’t been used in a long time and was just causing problems. I was so happy to have it gone. Things were looking better.

Then, in January of this year, I needed hip surgery. All of my joints are beginning to fail. Following surgery, my digestive system has called it quits.

I am currently starving, vomiting, and my intestines aren’t moving. I’m trying to coordinate with my doctors who I really respect but it’s not getting anywhere fast enough. I am terrified I will need a feeding tube again. I believe I will refuse a tube if it’s deemed necessary. After the last experience, I have seen that my body won’t tolerate it.

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Its a scary place to be right now.

And so I decide to write.

I decided to create this space. I need a better place to vent, to turn my ideas over, to let out the things that frustrate me and the things that make life so wonderful.

I’ve been dealing with declining health from chronic illnesses since 2015. I have hypermobile Ehlers Danlos Syndrome and a number of comorbidities that go along with it. I have some unnamed neuromuscular or neurological problem that is still being explored.

I have these things but I am not them. They do not define me. Even when depression drags me down in the depths because I feel like just maybe I’ll never get better…maybe I won’t. But I have to try.

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