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?

 

When the Results Aren’t Good

I’ve been playing phone tag with the OB’s office all day. They usually just leave a message. This time her message was to call back every time. I signed something at this particular office saying they could tell my info to me in a voice mail. They normally do! Telling me “it’s a little abnormal we want to see you again,” or “everything’s great, have any questions call,” whatever. But this time it was just back and forth. Come on guys, can you be more obvious?! If you are willing to leave a message telling me I have abnormal results then I’m going to ASSUME this particular situation is worse!
Well I got the call. Turns out the weird suspicions I’ve been having were right. I’m premenopausal. I’m 28 yrs old! It’s from the adrenal function issues I’ve had from long-term steroid use. They’re putting me on meds, oh but don’t worry, it’s all very normal (sure normal in women in their 30s or 40s to need this or just ME apparently) Blah Blah Blah she explains… All of these months of trying and I haven’t even been ovulating. None of it mattered. It made me cry. It really isn’t that bad. many women go through mild fertility assistance. But it just felt like one more thing my health was trying to take away from me.

I’ve always known I’d be a great mother. No matter how sick I get, I can take care of a kid. But now I might not have that option? For real?! That seems so surreal. But I guess the good thing is it’s still a might. We have a number of options left, starting with the Clomid I start in November!

It can be difficult to establish in my own head how I feel when I get bad news to do with my health anymore. I feel as though part of this comes from every few months learning something else was wrong with me for most of my life. Maybe I learned to just not cope? Perhaps I cope so well it flows over me? I think it is the case really. I go through all of the stages of coping so rapidly that most people don’t notice I had a problem to begin with.

**This does NOT extend to any other area of my life**

Instead this is why when I do encounter something that I can’t just let flow through me and go with it… I don’t know what to do. I shut down. I could be pouring myself into preparing for the eventual baby (which I have been doing for months), but I have such a hard time mustering the hope right now. I spent a lot of spoons/energy on hope these last number of months. I’ll figure out my way to cope with this, until I do, I remind myself I just haven’t found the next great thing yet.

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.

Holding onto The Floor

I woke up with a weird dizzy spell yesterday. Not my normal vertigo, but rather, everything was actually VISUALLY spinning and wouldn’t stop!! I was literally hanging on to the floor and walls waiting for everything to stop moving. Luckily my husband helped me take care of the dizziness. We are hoping it’s an inner ear infection and not a new Lupus symptom! My Husband is amazing, running around pulling out the right pills, getting me gatorade, and even handing me the pills in the order I prefer to take them. How sweetly observant of him, to know the entire routine, exactly how it makes me feel comfortable. But even with the quick Emergency Husband Response Team timing, I was out for the count all day.

This was a new symptom for me and not very much fun. I never find it very easy to deal with a new symptom. For one thing, the first part is figuring out if this is a symptom of the chronic illnesses or an outside issue. Then if it is indeed the Lupus (or one of the other syndromes/diagnoses) I have to figure out what the patterns of the symptom are. Potentially figure out a cause and/or treatment for it! Once I figure out how to treat or cope with the symptom itself I get a wash of “well damn, one more thing to deal with.” pouring over me. But I always keep going. I mean, life would get boring if I didn’t;) But in that moment while I am recognizing that I have some permanent new fixture of annoyance in my life… One that I will forever have to keep at the back of my mind, stay aware of, maintain/treat… I crumble a little. Just for a moment. Then I shake my head **Figuratively, please, no puking necessary** and I get on with my day.

How do you feel when you get a new health issue to deal with popping up in your life? Do you find health issues to be overwhelming or is it just one more symptom on top of a list you don’t notice? How about those of you without health issues, how do you deal with outside stressors that inch their way into your life?

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.

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.

Postponing Chemo Treatment #2

Yesterday was infuriating. I was so shocked, frustrated, confused, stunned? I don’t know which emotion of those I was feeling, I was practically numb with too many. All of the above emotions, I suppose?

We were driving to the infusion appointment that is more than an hour away from where I live, when I got a phone call from the Oncologist’s Office saying:

(conversation is abridged for pertinent info, leaving out most of the nastiness, random  extra questions, run arounds, and being put on hold)

Nurse: You’re numbers weren’t good and you can’t do the chemo infusion.

Ummm… excuse me?

**As my Dad pulls onto the exit ramp and makes a turn**

Me: My numbers are what? What numbers? What do you mean I can’t do it today? We are almost to the  clinic!

The nurse explained that when they drew my blood at the last appointment my numbers were dangerously low. That I should have known this. Since the doctor called me and left a message!

Oh…

**I look down at my phone to see if I have a missed call, but the  ”missed call” indicator showed none missed.**

Me: I’m sorry I didn’t get a chance to listen to that message can you please explain to me what’s going on?

Nurse: When we drew your blood. two of the three were low. Your platelet count even more dangerously so…

Me: (interrupting, oops) Platelet count, that’s what keeps me from bleeding out from a cut right? But then do I have a high clotting factor still?!

Nurse: You can’t get the infusion.

**I look up to see us pulling into the parking lot**

Me: I’m already there. I don’t understand what the problem is? I’m clotting just fine. The few bruises I got haven’t grown at all, less than usual actually…?

Nurse: That doesn’t matter. What matters is what your blood work shows. You can’t get the infusion today. You can’t get the treatment again, until we draw you’re blood, that means the infusion will be the 23rd.

Ok, hold on. First, I’d like to say that it is never appropriate to make a decision about health treatments based solely on blood-work numbers! Second, seriously, the 23rd? The day after that is Christmas eve! It’s the day we celebrate my Dad’s Birthday!? (He’s born on Xmas.) I don’t want to spend Christmas eve feeling like shit. Then, if it’s like last time in anyway, I’ll feel even worse on Christmas! What kind of asshole move is this?! I guess it doesn’t help that I don’t trust this doctor that I’ve seen only twice and seems to treat me like I am just another cancer patient rather than recognizing my scenario and bodily responses are different because I’m lupus patient and one shouldn’t consider any patient’s case to be just another anything! So why is that how I have felt both times I met this doc? Thank you very much.

Mind you, as I’m listening to the nurse’s explanations, I’m totally exhausted, have barely woken up yet, really. I’m pretty sure the adrenaline rush from what the nurse was telling me was all that I had jolting me in rather intense spurts to full livelihood. Need I say this is not a very nice way to be woken up? I think the term would be waking up on the wrong side of the bed. It didn’t matter that I kept trying to roll back to my side by being pleasant and enquiring (though more and more forcefully),this nurse was determined to take my happy resolve away. She and the oncologist were pushing me hard, apparently intent with the goal of getting me to fall off the wrong side of the bed.

And boy was it morning! Well for me it was morning. For others, in general, it was just before school starting or just after work starts. For me this was an unseen hour of the day! Don’t get me wrong I love it; am thoroughly fascinated by interactions and life that happens this time of day! I just don’t get the chance to experience it. Because I can rarely function well enough to move, let alone be in a good-morning-mood, that time of day. I mean If I wake-up in the morning before my stomach does, I puke.

I’m sad to say I let myself get frustrated. I was snapping my questions, pleading a little too. Why couldn’t we do this? Aren’t the results of my blood work going to go down with the treatment anyway? Isn’t that the point?

Nurse: Yes the numbers will go down with the infusions, but we have to wait for now because they are too low

Uhhhh Too low… I’m so confused, isn’t the point that they wanted these numbers to hit rock bottom? Isn’t the point to “reboot [my] immune-system by knocking it out completely?” Am I the only one confused here?

Me: Are my numbers borderline or am I am really that low? Cause I’m not having any symptoms to indicate this issue and my body usually reacts to bruising and cuts pretty negatively

Nurse: Well they may have been borderline so I’ll go check.

I thanked her and waited a few minutes. Thinking as fast I could what all of these things meant. Were they taking into account my typically abnormal tests results versus physical presentation of symptoms? Were they looking at my numbers with the lupus-effected factors included? Thinking, thinking, I had to understand, so I knew what questions to ask depending on the answers she comes back with.

Nurse: You can go to the center and have your blood drawn again. She says we can wait and see what the results are today

I thanked her and hung up the phone. I explained to my dad and BF what the situation was and we all went in. The nurses in this clinic are wonderful and greet me nicely. They just got off the phone with the oncologist, so they already know what’s up. They explain that they are giving me fluids while we wait for blood test results. After they have me all set up, checked in, with my IV placed, then they finally draw my blood.

What turns out to be an hour later, they come back with the results it’s gone down more not a lot but my numbers have gone down. They call the doc to see what she decides. It takes four tries and a text before the oncologist calls back. The nurses come back in to my hexagon shaped space that I’ve been assigned and express that the oncologist has said, “Absolutely, no.”

Well, there we go. I call the oncologist. I get her nurse again, great.

Me: Explain to me what’s going on please? Why can’t I do the treatment today?

Nurse: You have a low count and it’s dropped lower. That means it has a potential to drop even lower. Whch means we don’t know what your bottoming out point is. So we have to wait.

Me: What happens if it stays the same versus if it goes up?

Nurse: If it goes up, then great; if it doesn’t, then we know you’ve bottomed and we do the next treatment.

Me: After the next treatment will my numbers go down and bottom out?

Nurse: Yes, your next treatment will drop your numbers lower.

Me: So if my numbers are the same as they are today, at the end of this week,  then you will do the treatment anyway? No matter what my numbers are expected to bottom out either by the end of this week or after the next treatment? Then why can’t you do the infusion today?

**I get admiring fearful looks from the nurses and technicians around me** It appears it’s new to everyone to see a doctor actually question about their medical choices they’ve made about someone else’s body. Not to mention my competence with my medical issues based on my age baffles every medical practitioner I encounter. I think watching a child stand up to a doctor’s decision was baffling in a way that made them more consciously recognize that I’m not blindingly letting someone else control my body. All I wanted was answers. I have the right to understand the medical choices being made about my body. Doctors don’t always know best. Repeat after me: “Thank you for your medical advice. I will take it into consideration while making my decision.” That is what a doctor is for. This doctor didn’t seem to understand this.

Nurse:You aren’t listening to me. None of that matters. You aren’t getting the infusion today. I refuse to talk about this anymore.

Excuse me? You refuse?

Me: Thank you. **As I hang up the phone**

Well in my defense of hanging up on her, she did say she refused to talk about this anymore more. I really had nothing nice left to say to her on that topic or any other for that matter.

I looked up at the crowd in the room, many half gapping at me. I admitted embarrassedly that I hung up on the nurse. That what she was saying was inappropriate, not to mention that I have the right to ask as many questions and get clarification where I need. I ask the clinic if it is possible to choose treatment against medical advise, out of curiosity. Turns out you can’t, because the doctor has to send a prescription in for every treatment. Ah, in the end I never really have the power, do I? They finished the paper work, took out the IV, and prepped me to leave.

So, everything about the next 6mths just got moved back more. Instead of being able to even have a Christmas or visit siblings and in-laws I’ll be sick at home. Classes will probably have to move back another semester, if not two, at the rate they are giving me each infusion. As I wipe a few tears away I head to the elevators in the process dialing the number for my rheumatologist. Maybe she’ll explain things. I ended up having to leave a message. I’m exhausted, furious, and defeated.

I guess all I can do is wait until my orders get handed down from high. I told me parents and the nurses in the clinic, if I can’t do it this week I’m tired of being pushed around and put off and flibbertgibitted with and that I won’t do it anymore. I can wait and do this treatment in a more extreme situation. The social worker tried to tell me not to make my decision while being this upset. I look at her like she is crazy. Being upset doesn’t change the situation. When I am calm the situation will be the same. I haven’t arrived at the conclusion based off of anger, why would I change my mind?

Me: I don’t change my mind lightly when I’ve made a decision.

We leave. I slept the rest of the day–missing my rheumy calling me back–too exhausted to fight this anymore that day.

 

Don’t Let Them Convince You

I have to say this; for a friend, a fellow spoon, who is dealing with her Rheumtologist telling her she doesn’t have Lupus due to not having an ANA positive blood test results. Which is Lupus 101 people! Many people only test + sometimes, Some people test + all the time (like myself), and others  never test ANA positive at any point in the course of their disease. She has also dealt consistently with unsupportive or negligently supportive family members, due to their lack of understanding or lack of belief in her having the disease.

I know there are many others out there dealing with doctors and family members being unbelieving. I was lucky I always have my parents on my side even if it takes a while for me to find a way to explain an issue so that my parents understand it. It’s not like they can back something up they don’t know!

So to my fellow Spoonies and dear friend, ;)

Don’t let them convince you that you are wrong about what you are feeling happening to your body. If you know something is wrong or right and the doctor says otherwise, for now, work on home remedies to help with the symptoms, but do research of your own and search for new doctors. Get diagnoses slowly. Push and don’t stop pushing. Don’t let people around you discourage you! Go for the littler diagnoses first, then get the specialists to realize the connection and make the large combined diagnosis. For example Thrombocytopinia, Arthritis, Fibromyalgia, Raynaud’s Syndrome. All it takes is one specialist finally making the connection between symptoms to finally move forward with a proper diagnosis.

No matter what, I am the only person who can feel what is going on inside my body. Part of the problem I dealt with growing up was being told what is going on with my body by doctors and what needed to be done to fix it all of the time. Really, I was lucky if a doctor bothered to explain what was wrong in any abridged fashion. Some doctors still treat me like this as an adult. They forget that they are only my medical advisors, they don’t make my medical choices for me. Doctors have the training; but they can’t actually know what is happening to my body past the signs that they see in the blood work and looking at my body and the symptoms that I explain in what words I choose to describe them in.

Not having positive ANA in your blood-work, as well as not having the average numbers on any other blood-work the doctor decides is necessary, will mean the doctor makes an assumption that isn’t necessarily correct. Let me ask you, how do we explain people with auto-immune diseases who never test positive? We can’t explain that by doctors’ “rules.” We can only explain it if it is understood that not enough is medically known about our disease yet, so  a lot of what patients are forced to rely on, as a 24/7 hotline doctor, themselves alone.

I was raised with this disease. I was taught to notice, feel, and decipher all of the sensations that are occurring in my system. Where it became difficult (for all of us) was trying to find words that just don’t seem to exist in the English language to describe what I am feeling to someone who has never felt the same sensations. It was always exciting when I was able to latch on to some weird mangled phrase or analogy that finally clicked in other people’s heads. When that happened, my parents would help me figure out a way to speak doctor-ese so that the doctor, who is listening for key words and will often dismiss anything else (depending on the doc), will understand the symptom I am explaining and be able to properly treat me. It’s a process (I’ll tell you what!!)!

Certainly the concept of scales/ratio that we autoimmune patients are always being asked to describe (“On a scale of 1 to 10, how much does it hurt?) is so skewed that any common understanding we might have had stops right there–and frequently goes backward to the point where what I am actually experiencing can become minimized. The other person walks away with an incorrect view of my situation which is also demeaning to myself and my disease. When this happens, a person like that, rarely has the ability to grasp the difference even if I try to teach it to them.

So, fellow spoonies and dear friend, Don’t let them convince you that you are wrong about what you are feeling happening to your body.

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.

Falling Asleep

“Aaahhhh!! Baby!?!” I holler for my BF and for a minute I think, “Maybe I’m alone this time. Maybe no one is here.” But then I hear my dad’s voice. This is almost more confusing in my not-quite-awake state. Then I remember that my dad has the shift while my BF is at work.
Was it that late, really? When did I fall asleep? I ask, my Daddy answers the best he can. I was asleep when he got here. BF had told him I fell asleep playing on the computer.

This keeps happening–falling asleep in the middle of anything, like texting conversations where suddenly I stop. Yep. Either I got randomly busy and I’ll apologize later or I fell asleep! I fall asleep in the middle of eating. The other day BF had to convince me to get food out of my mouth cause he couldn’t get me to chew it as asleep as I was! This has been happening for a number of months now. I sort of assumed that it was my Fibro or CFS, but I am definitely getting more tired, more consistently. More specifically and annoyingly, I’m falling asleep all the time whatever I’m doing. I even start falling asleep on my feet while I’m standing.

It bothers and frustrates my BF to no end because for him my computer being on my legs or stomach that long makes him worry that I could have permanent damage (I mean we’ve all heard about how laptops are slow cooking our legs right?)  I already have growing nerve damage in my legs; cooking them won’t help at all!

**”Oops–as I slowly lift my laptop, so I can put the lap desk under me–Hehe”**

I feel like all I do is add stress to his life!! But this is a big factor for why I don’t get left alone any more. I have caregivers, though unofficial, all the time (family and friends). They all take turns, even down to planning their schedules together, to make sure I have someone here no matter what the situation.

I don’t realize I’m falling asleep. It isn’t like my eyes start closing or I am drifting off slowly, but that I’m wide awake and the next thing I know I’m waking up with no idea that I had fallen asleep!

When I used to fall asleep, I was fully aware of it. I have typically been such a lucid sleeper that after I wake up, I will process a conversation that happened around me while I was sleeping! Now with this passing-out-whenever thing, I don’t even remember my dreams!

This scares me. I’ve never not remembered my dreams or known what was going on around me in my sleep. Now I get nervous about sleeping, because of all things, I don’t like the idea of not knowing…I wish I could find a happy medium between Insomnia and Narcolepsy!?