Will I still be who I am If I stop giving chances?

Will I still be who I am and want to be if I stop giving people chances? There are so many pros and cons to both sides. Not getting hurt, not experiencing something amazing, not being taken advantage of, not learning something, learning something painfully. The list goes on. But the biggest con for me; will I have lost my love for the faults in humanity and every individual’s ability to rise above it?

But would I still be the me who I believe in when I look in the mirror? The person who believes that others can change if anyone bothered to let them… and if cigarettes are any indication or break ups for that matter, it can take quite a few times before quitting- a pattern, a behavior- finally sticks. I certainly know it takes a lot of times messing up, depressingly often, for years, before there is any noticeable changes in myself. Even when they are something that I work on everyday.

I talk too much, I come off too strongly to people. This can be very off putting. With the abuse I’ve been through I have been told how awful these traits are to the point where I realized I haven’t believed I’m worth being friends with for quite a long time. The worst part is, it isn’t like anyone else I know doesn’t just reconfirm they don’t like these essential parts of me being who I am. I just wish one person not my parents would tell me that those parts of me are good.

Do I change these things to fit other people? To not deal with the heartache of being so lonely? If I do that, will my heart ache for who I am stifling, my true me? Maybe they are all just right, maybe I am the problem… I am too much. Is that a bad thing though?

If so… how do I change this part of me that is so strongly ingrained in to who I am? If I don’t change then do I put up with the heartache, attacks, bullying of all the people who claim to care? Before of course disappearing from my daily life, but not before they put in their two cents, with the rare occasion I do see them and the bullying starts again? They have already been walking away claiming to be the victims- as I have been lashing out at them for being dragged into my now old group’s nasty drama then having their self absorbed drama/hormone induced narcissism (I know, mildly hyperbolic, but really mildly sadly) jumping on me and blaming me for it.

I want nothing of those people. I want to start new. I want to start listening to my gut and not letting my mind, circumstance, and other people I trust too talk me out of those truths I know

Every time I don’t listen to my instincts I get royally screwed over. Almost always with that person escaping as the victim cause they are “pretty little liars,” but being as blunt as I am… I must be the bad guy right? I won’t play their gaslighting games anymore. I’ve seen therapists long enough for them to tell me I haven’t an ounce of narcissism in me, that they are projecting, that I am being gaslighted. But I still keep making new friends who do the same to me over again. When will it end? How do I actually walk away from these toxic people when they are as ingrained in to the small town life that I live as they are?

An example of why I can’t walk away from a big part of our old group of friends is that in order for my husband to get promoted at work I have to play nice to- nasty narcissists who are manipulative and abusive in order to get what they want. Who somehow, until recently, would gaslight me into believing it was me. I swore I was cutting these people out of my life. But I can’t not if I want my husband to get a salaried job and not just be on minimum wage. Thank goodness for Obamacare or I’d be screwed with no healthcare until he gets moved up. But if I don’t play small town politics with these crooks like they are friends then any chance for advancement is going to be a nasty fight.

Thank goodness the top bosses aren’t in that drama nonsense. Because if it goes wrong, which I’m hoping it’s my anxiety thinking there’s no chance it won’t, these bosses should be able to recognize that this person who is above my BFG and training him has a personal issue with me and is taking it out on BFG. I have an issue with my husband NOT having an issue with the things this guy has done to me and to BFG and other friends at this point– all for this guy’s own gain. But that is so very separate an issue from that of playing politics of a corporate wife, even on the barely above minimum wage level. Because this being a small town, me deciding not to keep toxic people in my life limits who I see drastically. Other than for networking for BFG’s work. Which being as small a town as it is means seeing almost ALL of them, so trying to cut out the toxic people is practically lip service to myself… at least I haven’t run into my ex-husband in all this. That would be the toping on the cake.

I’m done giving these people chances, but I have to keep playing like they matter to me, I have to keep giving them chances, as the more I see them or interact with any of them– the worse my now continuously self-perpetuating abuse cycle in my head grows, just by hearing the things they have to say to me, seeing their faces, knowing to my BFG what they did just doesn’t matter to him even if it matters to me. Other than that it may cause problems for him with work and said people. But my husband needs the promotions for our family. Am I being selfish to ask that these people not be in my thus our lives?

My psyche and ability to move past my PTSD sooner rather than later or never versus my husband actually having a job that supports us as a family? Do I ever have a choice that’s a good one or will it always be to sacrifice one piece of myself or another? So do I screw up our family’s future possibly by taking away chances from the people who have already burned me or do I keep being me, letting them in… knowing in the end I will walk away far more damaged than I was before? I ask this as if it is really a question, but perhaps it is all rhetorical, perhaps I really have no choice, after all I am only being me

… right?

 

I Thought the Dog Would Come First

Yeah, you’ve heard me correctly. After a lot of research on both my part and my specialists’ we decided it’s worth a try to have a baby at this point in my life. I know that seems crazy right?! Well it kinda did for me at first.

Like honestly, I thought I’d get a dog first.

But my best chance of remission is having a child at this point in my life. Not just of achieving remission, but of having a possibly healthy pregnancy. I’ll try to break it down.

For one thing this will require support: Obviously any pregnancy does. But this one would for multiple reasons. Money, Help with my health, help with tired.. doc drivers and house work

Affects on my Lupus: enzymes, arthritis studies, by-passing after flare-up, likelihood of remission otherwise, likelihood disease will limit my ability to carry an infant to viable term after 35

Risk to child Now: Likelihood fine if it survives first trimester miscarriages I do not test positive for the protein’s as of 2011 that make a second-third trimester miscarriage likely.

Risk to child Later: All risk escalates along with that of the mother, risk of fertility issues go up as well

Risk to mother Now: A typical High-risk Lupus pregnancy, possible fertility issues already

Risk to mother Later: The risk is not considered worth it. They wound’t even talk about later for me being pregnant. The doctors switched over to discuss us having surrogates.

Rehearsal Dinner and Bachelor/ette Party

It was a little disconcerting to find out the week before the wedding that not a single person from my Fiancé’s family was interested in being at our Rehearsal Dinner. They all had things more important or interesting to do…!?! I was raised in a house where family is the most important thing. Granted we fully believe family isn’t limited to blood, but when you commit to being family there are certain things you don’t drop the ball on. Maybe I should see this as a sign that the family I’m joining doesn’t actually deserve that title. I’m starting to truly believe they don’t know how to be a family at all. No wonder they never seem to have been there for Fiancé in stories from his childhood. I thought it might have been how he angles the stories. But this is making me sad for the inlaws I always wanted and now will never have in these people. How do other people cope with having such shitty inlaws?

Sadly, his family not coming the night before also mean that his Best man won’t be here to throw him a Bachelor party. My siblings are throwing me a Bachelorette party. When I mentioned to them that his family wouldn’t be here decided to make it a co-ed Bachelor/ette party! Yay! My siblings are the epitome of family. They’re so marvelous:) My sister had great games planned and a pub crawl! My brother’s lady even made a chocolate penis cake!!!

The Dosage That Finally Made My Guts Heave

I can’t hold anything down this time around. It was the last infusion. What’s weird is the dose was lower than they have been typically. But for some reason it really hit me this time. I’ve decided that it is a combination of things. First I have become to complacent with taking the preventative meds for nausea dizziness, etc. Second, I suspect I over did myself he weekend before my treatment:/ I can’t help it, I want to have fun when I can. In general it keeps my spirits up, but when the backlash is this bad, it doesn’t make the fun worth it. I was just starting to get some meat on my bones! I really need/want to gain weight!! This isn’t gonna happen if I keep having weird bouts of renting food. I prefer to store permanently the food that I spend the energy to ingest, thanks.

My Brain’s a Goldfish In a Bowl

The goldfish swims around the bowl in circles. There’s an iHome on the desk the goldfish passes with every sweep. Wooh! iHome! *Goldfish is shocked* Swims around again passing the iHome; Wooh! iHome! *Goldfish is totally shocked by this new item in it’s view.

No matter what, by the time the goldfish gets around the bowl, it’s already forgotten about the iHome. This is my brain on Chemo.

Lost: Sense of Taste–If Found, Please Return

So I lost my sense of taste.

In a really weird way at that. Like my cousin explained it, my taste buds are like volume dials. My salt volume has been turned up to a 10 where as all the other flavor volumes have been turned down to a 3.

At some point between my 2nd and 3rd Infusions I started to lose my taste. I didn’t notice what was going on until after it had fully hit me symptom-wise. I blamed it on the fast-food restaurant not mixing their pop right. When I made dinner, it was that I didn’t put in enough salt. Chili, the chips were just stale.

But I knew for certain, and had no way to deny it, one morning brushing my teeth: With each swoosh of water as I rinsed my mouth, it felt like I was gargling the ocean. … I couldn’t make myself swallow. (Yeah, yeah, that’s what she said.) It was awful. I could convince myself for about three swallows that it was just a nasty pill, but when you want ice cold water to wash down the salty pill and instead you get salty water washing it down, it becomes an unhappy circle.

In the process of trying to figure out what I could eat and drink, I got so dehydrated that I had to get IV fluids at the hospital.

From what I’ve read, I don’t get my taste back until I am finished with chemo. Great.

Infusion #3- This Isn’t Fun Anymore

This isn’t fun anymore. Not that it was actually fun to begin with. But I have hit a point past my physical pain tolerance. Which is pretty hard to do when I’ve set my mind to it.

That sensation that alcohol causes burning into a cut to clean it? I like how that feels. The feeling that I have all over my body right now is burning and itching. It is so beyond my pain level I wish I could pass out so I don’t have to feel the pain anymore.

I had my third Infusion of Cytoxan on Monday. It seems to be an average thing for my functioning to start to come back around Thursday-Friday after the Infusion.

I keep wondering if this is really helping anything. My quality of life only seems to have gone down. What has it gone down for? Muy numbers on my blood work? But were those numbers really affecting my lifestyle on a level that the treatment itself is?

Time For Chemo Infusion #2

Finally.

This week was hell. I barely slept, I have actually been getting panic attacks again as well! When I do sleep, it’s during the daytime, exactly when everyone else wants to see me, so I miss visiting with family and friends who are in town for the holidays.

There is one positive thing about this week! I got to meet my seester’s BF. He is the first person who, upon meeting me, seemed totally comfortable and ok with my health quirks and all that comes with it! He even got all the vaccines, etc. necessary to keep me safe,  JUST to be able to visit our family! So not only is he sweet, polite, and interesting (Not to mention I LOVE how he treats my sister), he also isn’t scared off or weirded out by all the complications and eccentricities that come with dealing with my Lupus. I am sorry I didn’t get to spend more time with him, but I don’t think this one is going anywhere ;) , so I’ll have plenty of chances that I can look forward to!

Aside from this familial break from the stress of my health-life, my week was pretty complicated! I was on the phone with doctors and doing research everyday!

I called daily to ask questions of various specialists that I see. A nurse would get back to me with a brush off or a hint of information. When I managed to get a hint I would ask more questions of the doctor, causing the nurse to say she’ll get back to me and I am left tied to my phone waiting for yet another phone call. When I did manage to get an actual answer to a question I was always very thankful, I imagine the doctors are all very busy, I am one of many patients they see, I can’t be the only person with emergent issues and questions?!

But this still doesn’t make me any less frustrated by the walls being put up and evasions to my inquiries about my own health situation. Questions as simple as; “when are you scheduling my next appointment?” couldn’t seem to be answered by any doctor. Mind you, I didn’t actually get to talk to a doctor. I spoke to nurses who would read off a letter or note the doctor had left for them to relay to me. Honestly these women are angels. They dealt with me getting more and more frustrated with not getting answers.

Asking the same questions over and over doesn’t help, doing it louder helps even less.

But these ladies were patient and sympathized (in general, I am having a problem with one office). The nurses even go so far as to reread the questions they write down and ask for clarifications they think the doctor might want, these things help me have more of a chance I will actually get an answer the next time the nurse calls! They are on my side. These nurses, receptionists as well, want to help.

But somewhere there is a disconnect. Between how busy a doctor’s office is or who I talk to on the phone v. who speaks to the doctor or whether the doctor is distracted or is in a rush. Either way I don’t get all, if any, answers per phone call. Often all I acquire are more questions. My anti-nausea medication prescription was called in incorrectly by three different doctors, yet it is in my file at each of their offices, so to is my explanation and information which has all been written down by each office’s nurse when we have spoken on the phone.

But there is the disconnect between patients and their doctors?

I even had my father making phone calls. For one thing, he wakes up A LOT earlier than I do ;) , but also having grown up with this disease, too often I see a difference between how a doctor reacts to one of my parents versus the “young patient” or even the “young patient and her significant other.” My parents both have rights (as I signed the papers) to access my medical records and speak to my doctors. Like I’ve said before, it’s important to have people around you to guard your back, especially when feeling as exhausted as I have lately.

I’m lucky to have such a large immediate circle of support. I am even more lucky to have growing support from many other outer circles that either have always been important to me, so this support means more than they can imagine, so too are the number of new people I am meeting through this experience. I am learning that all of their support is invaluable not just for the advice, but to know that I am not “alone” in my experiences no matter how unique each one of our situations may be.

By the end of Saturday night (that’s right, we called daily for a week), we finally got answers.

First: I’d like to point out how surprised I was which doctor I actually got the definitive information from. Honestly, I would have expected one of the doctors I had a more long-term relationship with one of the doctors that, having experienced more with, I already trust more.

The oncologist is who called with the information!

You’ll love this! Guess who the oncologist called back with the information about my test results and when my next infusion would be? **Granted we both left messages, cause I seem to be getting nowhere with this office** But she called my father back to tell him my test results and when my next appointment is!

Seriously! It’s not like I’ve been an adult for 10 years and all… nope. This brought me back to the juvenile clinic I used to attend. Whether she meant to or not the oncologist made me feel like I was the child being talked about/around in the doctor’s office. What she may not have realized yet, is that I’ve been making my own medical decisions since I was 10yrs old. My parents helped with research and discussed decisions with me, but they were MY DECISIONS in the end! So far, it is starting to feel like the oncologist thinks she can circumvent me by having my parents decide on my treatment plan for me instead of even discussing it with me. If this continues it will be a big indicator that this doctor REALLY isn’t gonna work for me! I am giving it a try tomorrow. Monday is my 2nd Infusion and I will be seeing the oncologist while I am there for the treatment, despite the fact that her office is in another part of town.

This could be very interesting. Due to the fact that I will have half my immediate family with me. Each one with their own questions, protective curiosity and supportiveness to lend to the situation. After the encounter with this doctor’s nurse on the phone at the beginning of the week (what led to all the week’s difficulties), I need a lot of second opinion perspective on the situation, not to mention distractions and fun, to keep my blood pressure down!

**Watch me get white coat syndrome knowing I have to dwwal with this doc anyway**

Did I mention I’m not looking forward to this?

That’s ok. I’m making it fun. I’ve picked out a festive outfit my socks, panties, and earrings are christmas-y!!! I am wearing my guardian angel pendent knowing that all my extended family Down South is thinking about me. I am also bringing a cute pair of purple fuzzy socks given to me in a care basket by our couple friends J&J! I remember getting chilly last time I had the infusion until I put on fuzzy socks so these will be perfect (Plus they’re so silky!).

My Seester, who works in public radio, is audio taping my experience for family understanding, remembering, and documenting the experience in general–but just for us, not for radio. That my Seester even has an interest in supporting and experiencing this with me, let alone seeing and understanding what I am going through now with my disease more advanced than what she saw when we were children, means more to me than she can imagine!

My mother will be there for the first doctor’s appointment in a very long time. Being a teacher she gets very few days off. When I was little all of my memories are hospital trips with my Momma. To have her there with me again brings back the calm felling I remember from doctors offices when I was little, that feeling that everything will be ok? This might be the only infusion she will be able to provide support for me in person. As she will most likely be teaching for all of my others. I have an ulterior motive for wanting her there on top of Momma comfort and nostalgia: my mother is amazing at reading people. I need to know what she thinks of all these new doctors that she will be meeting Monday morning. It will be interesting to see if she reads the various doctors and nurses the same way I have.

Both my Momma and Seester will be traveling the hour to go to my infusion with me and then back home again and then back out of town for last minute shopping and to pick up my brother at the airport. Now that’s support! That much driving on the 23rd of December won’t be fun. It’s wonderful to feel loved. I might not get to participate in all of our traditions for Christmas, but what Christmas is about is This family, support, love.

My wonderful BF has agreed to stay in town and take care of various maintenance fellows who are scheduled to visit our properties yearly. These would have been hard appointments to reschedule as they are busy companies. My BF staying also allows him to get a bit more rest instead of waking up at the butt-crack of dawn with the rest of us. That way when I come home after chemo he will be prepared to be on point and, if necessary, to take care of me. He has been working nights everyday since break started. I know he is exhausted, giving him those few extra hours of sleep is almost a Christmas present in itself from my parents to him ;) though he would never say it or ask for it, giving him a chance to relax is good for him. My dear BF is only comfortable not being there because he knows my family has done this forever with me, “they got this.”

I am still considering looking for a new oncologist, but until I find one that specializes more specifically in auto-immune diseases, I am going to have to figure out how to put aside my frustrations and assumptions and work with this doctor. But I’ll tell you what, tomorrow I plan to ask how much experience she has working with auto-immune diseases, express to her that the shaking all my specialists assumed was due to my system receiving a dosage of Decadron hasn’t gone away, as well as request that the doctor write a written script in front of me for the correct dosage of anti-nausea pills. This way I can check that it is correct this time…

yeah, I am sooo not sleeping tonight.

Talking to the Therapist About Health

I saw my therapist today. I missed y last two appointments. I didn’t realize how stressful that is for me at this point.

It’s amazing how people have a stigma about seeing a therapist. When their entire job is to listen to you and help you with your problems…

Question: Do some people not have problems?

Oh. I guess that’s a pretty rhetorical question isn’t it?

We all have problems, all different problems, but everyone has them. Who couldn’t benefit from a little help once a week with these problems? Sure we might be able to be just fine working it out on our own. But, why do that, when you don’t have to? Often the therapist can find a way that is much healthier than an individual would come up with on their own.

 

My therapist say it is normal for me to feel that this chemo and severity of the situation isn’t real yet. She was impressed with my ability to have arrived at that point on my own in such a short time.

Letting My Support System Be That

Support system.

It isn’t even that they finally stepped up. It’s that I finally let them in, so that they could be the support they wanted to be to begin with!

I wasn’t ready yet, now I am. It’s been wonderful. I didn’t realize how amazing a support system I have until I gave it a chance!! Friends that I never thought would want to take the time to see me while I am dealing with these treatments are asking what they need to do (vaccinations, etc) to be able to visit me and keep me company while I go through this. I had a friend today who played video games while I took a nap so I would’t be alone (if I woke up and needed to pee for instance, since I have been losing my balance a lot more lately). I have a number of friends offering to wear masks with me when I go outside, so that I won’t feel weird being the only one wearing a mask.

My friends keep asking what they can do to help. I wish I could properly express that this is exactly what I need and more than I ever expected!