Finding a Reason to Keep Going

I wrote this in 2013:

What is there to hold on to when it feels like there is nothing left?

So often this is a question I come upon with the path I have to walk. What am I supposed to do when it feels like I’ve tried everything, the doctors are at a loss, and my life just keeps becoming less.

When I say less I’m referring to the idea of quality of life (QOL) for people with chronic conditions. We still can have an amazing QOL, but rarely does it match up in style when compared to a healthy QOL.

Part of Lupus is a mind game. The sicker I get the more grey my world gets. The more grey my world gets the more trouble my body has fighting off the Lupus and the sicker I get. It’s a cycle. So at which point can I or someone who cares reach through the grey and drag me out? At what point does the depression level affect the state of the Lupus flare, rather than just being a natural reaction to the state I’m living in at the time.

It’s remarkable how going through this disease really is a cycle.  I ws saying so close to these exact words earlier to my BFG and the Singer. I don’t understand  why healthy eople just don’t quite see it the same way. Let’s see if I can find better words as well as way to combat these feelings while sick and cycling in a post to come soon!!!

Finding ways to stay positive in a seemingly downward spiral that feels impossible to stop: 2016 Post to come!!

My Body is a Mess; That’s The Temple We Live With

I was talking to a friend who was recently diagnosed with Lupus about recognizing symptoms as they show up, telling them apart from other similar symptoms, and understanding if any of the symptoms are related.

One of the things she said to me, when we were talking about her symptoms, that reminded me of my first onslaught of a multiple symptom life was “… I can’t tell how cause my body is a mess.”

My brain hollered Hallelujah, you’ve crossed over to being a Lupie. Our bodies are our temples right? Well here is your temple and no matter how much we clean and dust OUR temple is a MESS!!

But this is the temple we live with; with Lupus. We may not be able to clean , but we can certainly organize our temples!

That’s where understanding how each symptom works in the network of your body’s systems becomes so important.

Homemade Wedding

My wedding ceremony took place in my neighborhood. When I say neighborhood, I don’t just mean my parent’s house. I mean the entire neighborhood! It was ACTUALLY the perfect day for it; The weather was amazing, the colors were amazing, It was ridiculously fun!

 

It was weird knowing my groom said he didn’t like anyone enough to want to invite them. I had to fight him to get him to have grooms men. He “didn’t like any of them as people” But I decided to see that as part of his depression talking and chose who I understand to be his friends. They at least believe he cares. So they care about him. They deserve to be there if not just for that reason, they care. Weird snags throughout the night before and day. All of them I can chock up to his strange mood fluctuations. But it was beautiful. If this is the extant of how he fluctuates, then I can do this forever:)

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!!!

World Lupus Day

Hey everybody it’s World Lupus Day!
Which of course I slept through, classic Lupie right;)
That is a big part of living with Lupus, to those of you who don’t have it. Think about it like this; such a big day for me to be around, but my body wouldn’t let me do anything today. Imagine living with something where it doesn’t matter how much you make plans, your body wins over any chance of making it to an event or even just getting out of bed that day.
Please think about the people in your life with a chronic illness. Remember they want to see you or make plans just as much as you do. We aren’t flaky or lazy, we fight our bodies daily to do the normal things you don’t think about everyday. If we manage to make it to an event a friend planned or better yet follow through on plans we made with a friend, we Lupus peeps count that as a good day. Hopefully our healthy friends can understand that, this is why having allies is so important. Happy World Lupus Day!!

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.

Like Saying Goodbye

It feels like I’m saying goodbye to most of my friends. I don’t mean this in an over-dramatic morbid fashion. Believe me, I decided I’m not dying this time around so any of the rest of it is irrelevant.

More in the sense that I’ve been through this before. The getting sick, getting isolated. They forget. My friends never mean to, they care about me as a person! Quite a lot depending on the individual relationship, but No matter what not being in someone’s daily life you end up drifting out of their minds too… Then when I’m healthy again I have to start all over with making a new group of friends.

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.

Nurses: Chicken or the Egg Theory

I have a right to understand my own medical treatments. I don’t understand or find it acceptable for a doctor or nurse to get huffy when they are challenged to explain a medical choice that isn’t being done to their own body! When you are looking at me like I’m patient number 342, why would it matter to you if certain situations occur. We are talking about my life! Those situations matter to me. So I want to understand the reasons. I want to ask the questions. Don’t you dare treat me like you know my body better because you can read the numbers on the chart. Guess what, I bet you money if the doc took the time to read the charts to me, I’d have no problem understanding the situation. But my experience tells me that they don’t like that much. Proprietary pride maybe?

Why would a nurse decide to be a nurse if she is the cranky type that is gonna have problems with questions from patients? Cause guess what, that’s half the job. Not to mention, most nurses seem cranky to me. I mean what do you think? It’s usually a diamond in the ruff when I find a nurse, let alone an office of nurses, who all have what I would consider nurse-like attributes.

I was having a discussion about this after my encounter with the Nasty Nurse of Oncology. We were debating whether people who had cranky personalities naturally, somehow, ended up as nurses or if we thought they turned in to that after years of patients also being complainy, cranky, and nasty. We ended up deciding that it’s a Chicken or the Egg theory. I need to just be grateful that I have the few doctors’ offices that I do have where I trust, respect, and feel respected by all of the staff as well as the doctor.

Doctors’ Office Marathon

Started this post Nov. 12; finished writing and posted it Dec. 12; yet the two weeks of doctors after doctors that I thought I would be posting about turned into a month. Ever wonder how many appoints can be fit into two weeks!? Well, I thought I was going to test that question, but in fact, I have to extend that timeline: How many doctors’ appointments can fit into a month? … sigh. It’s been pretty exhausting.

This week is the first week that I didn’t have at least one appointment in a day. As a matter of fact, I had two whole days where I didn’t have an appointment this week!! Hahaha! All I did was sleep!! I’m beginning to feel bored….

Is this what my life is turning in to? Being legitimately excited to have two days off from doctors? Oh well! I’ve done it before when I was in elementary school, then again around 11-12yrs old? I don’t remember exactly. But I had a lot of tests all of the time. Then again, of course, with the lung involvement in high school. But nowhere near the number of appointments I’ve been having lately.

Surprisingly, I have had fewer tests than in those earlier times. Until now, I have lived with the assumption that  more Doc apps = More Tests. Not the case this time! I suppose that is because we already know what the results are right now and it’s just about waiting to see something change. When it changes, whatever IT is, I’m sure there will be a whole battery of tests all over again. Either that or we have another except Izzy situation. ;)

But I still have to see every doctor, they still all have to stay updated, as well as draw my blood for whatever that specific specialist needs as the indicator test. Their particular red flag telling that doctor to start the battery of testing for whatever area of specialty that doctor is in. They rarely seem to look at the whole person, but I’ve gotten pretty lucky, I’ve found a number of specialists that are much better at looking at all of me than most. I can say most cause in my life BOY HAVE I SEEN A LOT OF SPECIALIST!! I’ll talk about that in future posts. Oh boy are there some funny doctors out there!

I need sleep, but I have a tendency to get wired the night before a doctor’s appointment. Having an appointment daily is making my sleep pattern even wackier than it would be normally. I have to see the oncologist tomorrow. So I may have had today off, but tonight I am spazzing again as usual.

That’s really all I can think to call it, I guess I just get antsy. My body knows it has to get all of these things done, on a specific timeline, remembering specific things to tell the doc… I get wound up and then I can’t unwind.

It feels like it’s been a month since I’ve had a chance to unwind. My anxiety meds and my dizzy meds have been upped in dosage. I know why I need more anxiety meds that’s for sure! I’m so anxious I’m pacing (when I have enough energy to pull it off)! Which is really hilarious for an audience, because my vertigo has hit big time, though, the thing is, I’m not certain it’s vertigo. I’m just falling over. I’m standing or walking then I lose my balance. It’s frustrating. I vaguely remember feeling like I was “just falling over” when my vertigo had first started. It might be that I just haven’t had the vertigo this badly for awhile. I have no idea, but I need to remember to mention the balance issues to the oncologist. Since I have no idea if it is a possible side-affect of the Cytoxan.

Here’s where I really start complaining (I know, I know, technically, I already was). This is really messing up my social life. I can understand if that sounds dumb, but I don’t ever seem to be awake when people would be free to visit. When I do manage to line up a friend for a visit, they end up having to cancel because we forgot one shot or they have a stuffy nose when they wake up that morning (we can’t risk me getting sick). The worst part is, when my friends come over wash hands put on a mask, I bounce off the walls chattering with excitement for 20 minutes, then we sit down to watch a TV show and I fall asleep. I wake up in time for my friend to help make sure I eat and take my meds, then it’s time for my friend to leave.

That feels a little more like my friend just volunteered to be my babysitter so my BF has time off than that I actually got to socialize. Kudos to my amazing friends for hangout with me while I sleep on the couch next to them, but I wish I could go get coffee with the girls or go out for drinks. I wish I had the energy to hangout with the guys and go on adventures!

But I barely have the energy for all the doctors I have to see every week. Who has time to have fun on top of that? I may not have a job, but it’s starting to feel like my full-time job is being a patient. I wish I got paid to do this instead of having to pay for the experience. it’s the Disney World ride that they never gave a grand opening, too many ups and downs, only the designers liked to ride it.

Let’s just say you wouldn’t ride this ride if you weren’t strapped in to begin with. You certainly wouldn’t sit-down and buckle the straps yourself.

This is NOT a sprint people! No matter how much I keep pushing situations and trying to turn this medical situation into a sprint. I’m having a hard time accepting that this time around, this treatment plan, is a marathon. I think seeing doctors nonstop is finally starting to pound this idea into my head though.

**Admittedly at first it was like a fun flashback to my childhood**

But now I’m over the nostalgia and I am tired and “I just wanna go out and play!” wwaaaaahhhhHHH!!!!!!

There is still a big part of me that thinks, “Push that poison through me. Let’s get these treatments done. Why are we waiting for the next one? I’m already a little better from the side-affects of the last infusion, so let’s do this!?!”

I know it’s not so much the fear that anything will get better or worse medically, but that these things will keep coming–in wave after wave it will keep coming. Not in the up/down patterns of my Lupus that I am very used to, but rather in a frantic pulling in and out of an undertow, I won’t be in control the way I’m used to. I can’t swim out of the riptide this time. I have to just let it pull me in and out until the treatment is finished. I have to run the marathon to the end.