What I Didn’t Understand

I looked around her room after getting home from dropping her off at college. It’s so full of things, and yet so incredibly empty. It’s full of memories and love, and a stuffed animal or two, but not her. And that is hard to accept.

Shortly after moving in to the house Nadia proclaimed her room was too small, which it was, and she commandeered the basement family room as hers. Every morning when I left for work I would have to walk through, trying not to wake her. I would glance over at her sleeping and she would shift around but rarely would wake up. Walking through that room now though, emotions bubble up and my gut just drops. I still look over at her bed, probably out of habit, but it’s empty.

Earier in the week we packed up two cars and made the three hour drive to Duluth. Nadia and I rode together, listening to music and chatting with my mind not fully comprehending what was to come. I knew what the inevitable was, but tried to keep that out of my mind.

We unpacked her things into a room that was a fraction of the size she was used to. I hung up her clothes, noting that she didn’t bring very many sweatshirts and that there were easily 40 more of them sitting at home. I made a mental note that maybe I would send her some, worried that she wouldn’t have enough come winter time.

I helped make her bed, watched as she set out little trinkets she brought. I hoped that when she looked at them they would remind her of the fun we had and the love we have for her. We decorated her baren walls, hung up a fullsized mirror, and to be honest I tried to grasp on to every simple task as long as I could. But it was time. It was time to trust that we planted and nurtured seeds to the best of our ability and it was time to hand over that responsibilty to her. Some tears were shed, but inbetween them we told her we loved her and to have fun and be safe.

And then we walked away.

The drive home was not spent in total silence, but a lot of it was. Speaking for myself, so many thoughts went in and out of my head. How is she the age of when I first went to college? It just didn’t seem that long ago. I spent time hoping that she found future lifelong friends like I did. Worrying that there are people out there with bad intentions and hoping she trusts her gut and weeds those people out. I got a few texts from her while we drove home. The instant connection is nice to have but it doesn’t replace actually having her there.

But yesterday was the hardest, minus drop off day. I didn’t have my mini-me. I don’t work on Fridays and those days were reserved for Nadia and I to go to garage sales, thrifting, hitting up Cruml, and hanging out. I got my haircut, which was also a thing we would always do together. The amount of time we spent laughing the salon together in the past was rediculous. Yesterday, no laughing happened.

I went to a thrift store after and looked around and eventually found a manaquin head. I took a quick picture of it and sent it to her with a “missing you” text. We always found them funny and took pictures of them. Sigh…it has to get easier. It simply has to. I had been warned by other how emotionally hard this would be, but until it happened, I just didn’t understand.

So now starts a new chapter in this crazy life of mine. Dion and I have spent so many years being parents, that it’s hard to remember what it’s like being only us.

Things have changed, likes have changed, and now it’s time to regroup and relearn how to be a couple sans kids being around. What an incredibly strange thought. We will be there for our kids if they need us. We will always text back and answer those rare actual calls. Our love for them doesn’t change now that our house is empty, but our lives certainly have. Change isn’t always easy, but in time, there will be less tears and a new normal to our lives.

The Past 24 hours

I am back at my hotel, just finished dinner, and sitting down to update all of you on my mom’s status. The past 24 hours have felt like days and days. We first arrived at the hospital to check in at 8:30. Fast forward about two and a half hours for the pre-prep process. Lots of questions, I washed her whole body down with some type of antibacterial wipes, helped her get her gown and slip stop socks on, the IV was started, more questions, and then she was off to preop. I went down there with her as well. More questions that were pretty much the same as earlier were asked. Her pacemaker was checked, we met some of the doctors on her case, and at 11:00 am she was wheeled away. 

Our first text notification from the hospital was at 11:00 am saying she was in the OR. The next text was at 12:30 pm saying that the procedure had started. At 2:30 pm we were informed that the procedure is in progress and she was doing well. 3:30 came and we were messaged that her belongings had been moved up to the floor she was going to be on. 5:30 pm the message started that the procedure is starting to close. At 6:40 pm she entered recovery. That was the last text we got. Almost 3 hours later we made the decision to walk over to the hospital and try and get any info we could about how things went, and how she was doing. We hit quite a few roadblocks because there were three of us there and we had to explain that our sister was deaf and couldn’t communicate well with others and got an exception to the “2 people only” rule. We had to do that 4 different times, with 4 different people. Each one stated they were adding that info to my mom’s record, yet every time we were faced with this, no one could find it in her record. Anyway….

We made it to her room about 5 minutes after she got there. We only stayed basically to make sure she was doing ok because she was very in and out. We didn’t get any info on how the surgery went. We would have to wait for the next day.

The next morning (this morning) we made our way back over to her room and she was more alert. She didn’t remember that we had been there the night before which wasn’t a surprise. We still hadn’t talked to anyone about the surgery, but the nurses put a call in to let the doctor know that we would like some sort of update. About 2 hours later we got a call from her doctor who told us the following:

  • They did not have to remove all of her large intestines
  • No stoma was needed
  • The area the tumor was in was removed and sent to pathology (that will take a few days for the results)
  • They repaired her hernia

The last one was a shock. We didn’t think it was going to be able to be repaired, as so many doctors in the past said they wouldn’t touch it with a 10-foot pole. If everything stays right, and no new hernia appears, this is a life-changing thing for my mom. That hernia has been the bane of her existence. It’s been nothing but constant pain and she’s had to wear a binder for years and years to try and keep it supported. There is no guarantee that the repair will hold because it was such a big one, but we are keeping hopeful thoughts that it will.

It has been a rough few days around here, but we know that she is in great hands, and she is cancer-free. There was no sign of it in her nodes or the organ around her colon, and for that we are thankful.

Thank you to all of you who have held our theoretical hands through all of this. The support here, in person, from my job, has been overwhelming. While we know the temporary road ahead is not an easy one, what lays beyond it is in reach. Sorry cancer, we won this one.

Some Reading and Writing

Being sick these last few days has left me lying in bed watching movies, youtube, playing some COD, and today, going down memory lane. I used to write in a different blog regularly, just about daily. And this was back when I was fresh from my cancer diagnosis (well, within 2 years of it. That’s still fresh) when the girls were little and I had a lot to say. They provided me with many stories and kept me on my toes at all times. It was interesting to go back and read what their personalities were like back then and see how some of those traits continued into present day.

So much was going on back then, that I can’t believe I even found time to type out my thoughts. But I did. And a lot of them. Besides the girls. my writing was focused on my health, not surprisingly. Sometimes a trip down memory lane is more like a ride on a rollercoaster. The bumpy tracks, the steep climb up high, the drop to the bottom leaving your heart in your throat. So yes, I stand corrected. It wasn’t memory lane, it was a memory rollercoaster. Somehow I managed to stay on the tracks even at times when it felt like I was sliding off. And there were many times.

But not all writings were medically dramatic. There were a lot of posts and pictures I saw that made me laugh out loud. And those were fun to read. I am so happy that I kept a blog at that time in my life. It’s been such a great way to look back and reflect on things. One of the biggest changes in my life is how I view my cancer. Back then I was certain that I wouldn’t go a day without ruminating on it. And as time has passed, I am pleasantly surprised that I was wrong. My cancer was a blip in my life that was scary. It was something I never thought I would mentally get past. But here I am. I don’t think about my cancer every day. But from time to time there are reminders. Maybe to keep me humble, to remind me of what I am capable of.

As some of you are aware, my mom was recently diagnosed with colon cancer (see previous post for more details). People have asked me how she is doing but there’s not much to say. She is to have surgery on December 29th. Until then, we wait. Cancer has hit my family hard. Me, then my dad, and now my mom. All of us fighters in our separate ways. Yes, life is a rollercoaster.

So, if you’re interested in seeing what my life was like about 16 years ago, that blog still exists. http://www.britehope@blogspot.com You kind of have to work your way back to get to the beginning of it. But fair warning, I am queen of TMI and you may read some things that are a touch oh….graphic. On the flip side, you may also find some posts that tickle your funny bone (one in particular involving a bat in the house…poor Dion). It’s been an interesting day of reading and I have only gotten halfway through that old blog.

One Day at a Time

It was a long week indeed. It’s always amazing to me how going to doctor appointments can wear a person out. I’m sure the emotional part of it takes a toll on the body and then compounded with all of the thoughts equals up to exhaustion. I chose to update through this blog as I feel like there is a lot to say that would not be easy to convey through messenger. I do plan to do most updates on there though.

So….as far as what we now know….

We met with her surgeon who is fantastically blunt and to the point. He did not beat around the bush and told us his honest opinions on the situation. We were basically given three options, which from the outside seems like a good thing. Three options…three choices given as to how to approach this cancer. And while options are good, sometimes the actual options are somewhat scary.

The first option. Do nothing. Let nature take its course. He said she would probably have about a year to live, if taking that route. Option two, try chemo. With that route, he gave her about 2 years. Well shit, let’s cross our fingers and see what’s behind door number three. Surgery. He is confident he can do the surgery, as he has many times. My mom, however, comes with a few sides of complications. Serious complications. She has the hernia which they would have to work around. If they were to even attempt to fix it, there is no muscle let for them to try to attach the mesh to in the abdomen. They woud have to try to attach it to the back muscle. And in doing that surgery, you need it to be clean. Resectioning of a bowel is not a clean surgery. I don’t believe they would even attempt to fix the hernia. At this point, the tumor is the priority. They also found another polyp which is close to the tumor so that will be taken care of at the same time.

She has had a bowel resection in the past for diverticulitis, so now the question is if she has enough large intestine to reconnect to. If not, they would have to connect to the small intestine, which would work, but would also create other issues as far as how digestion goes. I won’t go into the messy details of that. The hope is that when they reconect the intestine that it remains pink and healthy and has good blood flow. They can tell during surgery if it appears that way, but it’s after the fact that things can go wrong. If the intestine dies for whatever reason, it could kill her within a week. There’s no going back when all of those toxins are released into the body.

The next complication is her autoimmune disease, pyoderma gangrenosum (I’ll refer to it as PG). It is a condition that makes it a challenge to heal wounds. We were unaware she had the condition when she had her bowel resection. It ended with deep open wounds, a wound vac, and years of trying to get the wound to close. Literally. I couldn’t tell you how many time I changed her dressings and took her to appointments to try and figure out what the heck was happening. She was finally diagnosed and given treatments to help the healing process, but dang…..it took so long. Literally years. The PG is a big and valid concern.

My mom is also on blood thinners because she had two pulmonary embolisms after her hip replacements She will have to go off ot the blood thinner for surgery, creating a risk for more blood clots to happen.

The surgeon said it wasn’t a matter of if she would have complications, it was a matter of which one she would have. He all but guaranteed that with all that she has going on, outside of the cancer, that there will be complications. She decided in the office that she was going to do the surgery. Her thought process is that she will do what she has to on her part, and the rest is up to god.

He told her that what was going to follow was going to be a hard and challenging road. I feel like we don’t really have a clue as to what that looks like though. I suppose no one does until they go through it. And that is where we are in this curvy, bumpy, uphill road that is cancer. I’m sure I have fogotten things here and there, and maybe even didn’t explain it well. You sit there and listen and try to absorbe everything that’s being said, but sometimes thoughts and emotions get in the way.

Anyway, she was given December 29th as her surgery date. The thing I do feel we are lucky to have is the different teams of doctors who are working together to try and get this right. The communication between them all is impressive, and that’s important. So everyone put on your seatbelts, this is going to be a bumpy ride. Thank you all for the thoughts and prayers and messages. It truly means a lot and brings a ray of sunshine into the times that are dark.

And the Hits…Just…Keep…Coming

I have classical music playing in the background. My love for the sounds of the strings, horns, percussion, isn’t one that many know of. And probably even fewer people around my age feel the same as I do about classical music. There is just something about it though. No words to interrupt my thinking, just music. Songs that carry their own emotion, with no need for lyrics. I cannot name the composer of most of the songs on my playlist, and maybe I should spend some time learning that fact. Put it on my list of things I want to do.

But at this moment, I have more on my mind than composers. In fact, this whole weekend has been about me researching, thinking, being angry, being frustrated, wanting to be alone, sleeping, and questioning how much more strength I have. I tend to self isolate when it comes to negative things happening in my life, and true to form, that is what I have been doing the past two days.

I sent a message to my care team after a particularily painful day at work a couple of weeks or so ago. When I say painful, I mean close to tears, felt like I got hit by a truck, dip into leftover strong pain meds from a past surgery type painful. I got a message back saying my doctor was going to be out until September something. Fantastic. I did however get a message from another provider who set me up on a prednisone burst in hopes to lighten the pain and an appointment about a week later. The only positive thing about the prednisone is at least I would have some energy. Wrong. No extra energy. How disappointing. My taper ended and I had my appointment this past Tuesday. I like the dr I saw. She asked a lot of questions, answered most of mine and then hit me with a metaphorical sledge hammer. She was thinking that the pain I have been going through for the last oh, I don’t know…it’s been so long I don’t even know…. I would have to guess about 4 or 5 years, is probably not from my Sarcoidosis. Um, what? Pardon? And here, my friends, is where things get interetsing.

It has been a known fact that every time I go into the dr for my appointments, it’s been the same thing time after time. “Blood work looks great” and if I had had some type of scan…”Everything looks normal (minus my liver levels caused by the medication)”. To both of these answers I would say “then why don’t I feel normal?” So medication would be increased (It got to the point where I was maxed out on Methotrexate) and I would be sent on my merry way in hopes that I felt better. I never did. In fact, the meds that were supposed to help me, starting affecting my liver to the point where I was having blood draws every three months to keep an eye on it. After consistently having a raise in my liver levels, it was suggested that I try a new drug (humira), which I did. It was not helping, and after 10 weeks of using it I sent a message saying so, in which I got the general “well, it could take up to 16 weeks to start working”. Last week was week 16. So back to my appointment….the doctor ordered more blood work, and decided to do an MRI of my hand to see what, if anything was happening there. My hands tend to get sore easily, like now just from typing, so she was searching for a sign that Sarc was present. And the results…..drumroll please……nothing. Like usual. Again was told that everything looked good. To which I responded, “I don’t feel f@cking good”. I am always tired. Like, always. I usually go to bed around 8:30-9 on a work night. I always have pain somewhere, with various instensities. I always have grandioso ideas on what I want to do on the weekends or after work that mostly end up not happening because of how I feel. I am not fine, I don’t feel good, and something isn’t right. And finally a doctor agreed with me. You start to think that you are going crazy appointment after appointment with no change in how you feel but still getting the stamp of approval from doctors that everthing is A-OK. Well, it’s not. And finally I have some validation. But with that validation comes another diagnosis. This doctor believes that I have Fibromyalgia, which would explain why the meds never really helped with my pain. But that also opens up the fact that this has been going on for years and I have been putting some pretty serious medications into my body that didn’t need to be there. For years.

So now I am waiting to be contacted by another team to see how they can help me with my symptoms. The thought of having a second non-curable disease is weighing heavily on me and my wary body. There have been moments of weakness where my mind has tried to convince me to give up. To throw in the towel and let the cards land where they may. Mostly because fighting is hard and painful and exhausting.

I’ve been trying to find the positive in all of this and the only one that comes to mind is that I’m thankful I didn’t have this to battle when the girls were younger. I was able to play with them and enjoy active things with them as well. For now, that’s all I’ve got. I had to stop watching videos of people who suffer from Fibromyalgia because a lot of them do not have a high quality of life and I’m not ready for that just yet. Oh, and the ribbon color matches that of Sarcoidosis, so that’s nice. A twofer if you will. <sarcasm> So now I wait for a call to set up a meeting with yet another team to see how they can help me. ITP, Breast Cancer, Sarcoidosis, and now Fibromyalgia. Stick a fork in me, I’m done.

<<<<<<<<<<<<AN UPDATE ON THE ABOVE POST>>>>>>>>

Never mind….the doctor I saw, after reviewing my symptoms and the many questions that I answered, has said that I am close to fitting the requirements for fibro, but not quite there. So…..there’s that. I have since had another sarcoidosis flare in my skin and will be going back on meds to try and get it under control. But that’s a post for another day.

Like Sands Through the Hourglass

So are the days of our lives. You never believe it when someone tells you it goes by fast. Especially when you’re endlessly cleaning up toys, or fighting a toddler to get dressed, or gasping in horror at a self inflicted haircut. In the moment you wonder if you’ll survive, if you’ll ever have time to yourself or watch a TV show that doesn’t revolve around finding a map or gown ass adult men singing about hot potatoes. But you will. You do. And somehow those days, those long days, become part of the fabric of your life that you miss. It goes by so fast.

I miss the random hugs. Instead now it’s the hug goodbye, which hits me as much as the random ones but they’re not…random. I miss the “mommy and me” days. I’m lucky to have teens who still want to do things with me, but it’s not as often as other things have filled their lives. As hard as it was to read the same books over at bedtime, I miss the snuggling that came with it. It goes by so fast.

There were many tears at the table, watching her struggle with math. I left that area up to her dad as he was way better at explaining things to her and guiding her on how to solve the problems. She struggled, but worked hard. And now here we are, the last week of high school for her. It goes by so fast.

Teaching her how to drive, lord help me was a constant thought I had. 16 and knowing everything there possibly is to know about driving…lord help me. When the first Incredibles movie came out, her dad took her to the theater. Her first movie. He brought little bags of snacks for her and she sat on his lap and watched the whole movie. She was about 2 years old. When the second Incredibles movie came out, she drove us to the theater. Life is something to behold. But the first drive in snow I’m sure is when the grey hair started to pop. The intense worry. Intense is probably not a strong enough word. Did we teach her well enough? Will other drivers understand it’s her first winter? My god will she counter steer if she fish tails?!? We survived the first winter, and hope it continues for years to come. But my lord, it goes by so fast.

There were a few moments in the 15-16 year old age range where the thought “am I going to survive” turned into is SHE going to survive. Butting of heads, differences of opinions, and sarcastic tones, and attitudes. Oh the attitude. I’m not ashamed to admit that I looked into boarding schools and got info from some. I was afraid I was way out of my league in parenting, at my wits end on how to deal with this hormone filled person in front of me that I did not recognize anymore. But slowly, with lots of discussions and hard work, we made our way through that phase, each of us doing the best we could. Even in those trying times, when I thought it would go on forever, it truly did go by fast.

And now, as I sit and reflect on the past, the future has crept in almost right under my nose, and there are new fears. It’s no longer centered around toddler, grade school, middle school and high school worries. Now it’s hoping that we planted enough seeds and that a few of them grow. It’s hoping we’ve shown her mistakes we’ve made and how she can avoid them, knowing full well she’ll make her own mistakes as she travels the road of after high school. It’s hoping that she believes in herself even half as much as we do. It’s hoping that wherever she ends up that she’s happy and healthy. Because in the end, that’s what we all want for our kids, isn’t it? But my gosh…..it went by too fast.

Up Down Left Right

Lame title for a post…I know. But it is that way because I have a feeling I am going to be all over the place with this one. This has been, and continues to be a busy month. But first things first. Today (actually yesterday. I started typing this last night) is my baby’s birthday. Although not so much a baby anymore….she’s 17. I now have a 17 year old and an 18 year old and I don’t know exactly how that happened. Time has just slipped away from me and it hardly seems fair.

She was about a month old in this picture and it remains one of my favorites. Both of us with out little peach fuzz hair. I missed so much of the first year of her life and would give about anything to get it back, minus my cancer. Just a moment to breathe in that baby scent, to watch her suck her thumb and listen to the noises babies make. I’m beyond thankful for all of those who helped us out when we were fighting for me to survive, but I certainly missed a lot. Watching her grown into the beautful, caring young lady she is now has been an honor. Things were never dull with Nadia around.

She was always a funny kid, but as she grew, her humor did too. I know she is not a huge fan of the sound of her laugh, but to me, it’s everything. Can you hear it in this picture?

Her giggle remains the same as when she was little and I love it. She has been an easy kid to parent, actually likes spending time with me, and I hope this never changes. So to my dear daughter Nadia….I hope the world is ready for you and your brain. You will move mountains, and I can’t wait to see it happen.

On To Another Topic

Here comes this mix mash of things. Try to keep up with my thoughts as I look around inside my head as to what all is going on up there…..My doctor is wanting me to change medications for my sarcoidosis as she thinks that is what is causing my liver numbers to rise. Insurance however, is not in agreement with what medicine I should have and has denied the request from the doctor. She is currently sending an appeal to insurance. We’ll see what happens with that issue.

Work is still going well. I am forming some awesome friendships and really enjoy what I am doing. There can be a language barrier with the housekeepers and us supervisors. We have people who speak Vietnames, Bosnian, and Somalia with little to no English. I do my best to communicate with them and sometimes that involves acting things out. If I am lucky there will be another staff member nearby who can translate. But one way or another I get my point across to them and I don’t know for sure, but I think they appreciate my efforts. One of the ladies a few weeks ago, who has limited English under her belt,was leaving for the day and came up to me hugged me and said “I love you”, It was the sweetest gesture I’ve ever had. I’m so incredibly fortunate to have landed where I have. I really like working in hospitality. I love talking with the guests and getting to know them. A lot of them are repeat guests who come into town to go to Mayo. There is no better feeling than being able to walk away from an exchange knwoing that what you did has helped a person. Most of the time it’s not a big thing I do to help someone, but sometimes the smallest gestures are the ones that remain with people for a while. Anyway….no regrets on the decision I made. Not a single one.

So Nadia and I are spending the weekend together for her birthday. We are in Sioux Falls, South Dakota. We came here last year (Claire was with for that trip) and loved it so we are back again. I had ordered flowers ahead of tme to be put in our room for her bithday. They are beautiful.

I know I will enjoy my time here with her. To top it off, it will be my last hurrah for a little. Monday I am back to the OR for a duplicate surgery I had last year. I won’t go into too many details as sometimes less is better. I’m hoping to be back to work in two weeks, but we’ll see. I’ll have to judge how things are going. It got me thinking about how many times I have found myself in the OR room and it was literally hard to count. In my lifetime, this will be number 20. It always amazes me to meet someone who has never had surgery. And likewise I’m sure if they knew how many I have had they would think same. And actually, as I type this I have had to change my number because into my brain would pop another surgery that I forgot about. Imagine that. Having so many that you forget some here or there. The last one I just remembered was one you would think I wouldn’t foget. It was back in the day when my original oncologist believed my cancer had returned and wanted me to start chemo again. We went to Mayo for a second opinion and they did a biopy which involved going through an incision in my throat and threading whatever they used to obtain it, down into the lymph nodes between my lungs. Of course the result came back negative for metestatic breast cancer, but it did start my journey with lifelong Sarcoidosis. That was a horribly scary time in our lives. We couldn’t get into Mayo for about three weeks and for those three weeks we were trying to wrap our brains around the news my old oncologist gave us. 2-5 years if the chemo worked, 6 months to a year if it didn’t. I spent quite a bit of time on the phone making sure my life insurance policy was good to go. I spent more time looking at my newborn wondering if I would live to see her start kindergarten, I spent time talking to Dion about how he could remarry, just no one who was high maintenance please. I didn’t want that as a role mode for the girls. I could go on and on and on about this three week time frame, the emotions, the conversations, etc, but to be honest, it’s too painful.

As this is getting long and really has a horrible flow, I think it’s time to wrap it up. It’s about 8am and time to get moving in the city of Sious Falls. Now, just to motivate myself and my sidekick to get out of bed….wish me luck.

111 Lighter

I went through my friend list on Facebook over and over. I paused at some names, skipped over others and managed to relive a lot of memories in that time. I ended up removing 111 people. Some were people who had duplicate accounts, some were people I’ve had no contact with in years, some were people who I didn’t think would care either way. If they do then I’ll hear from them.

But then there were the ones that have passed on. And there were more than I expected (11). I cannot bring myself to remove them from my list. I just can’t. I paused at each of them, remembering things we said to each other, the relationship we had, remembering the ones who fought hard hard battles. Cancer took more than half of these people. When you have had cancer, you meet others who have or had cancer. They become family. They know what you know. They feel how you feel. There is no way to explain that journey with anyone who has not experienced it. Yes, there are those who have had a scare, those who watched a loved one go through it (which I have also done), but as far as living through it, it’s different. I found out a co worker had breast cancer as well. You should have seen us going back and forth, telling our story to each other, speaking the lingo that goes with breast cancer, ER+ or ER-, Her2+, braca genes, talking about the choices we had to make, the surgeries….oh all of the surgeries. It really does become somewhat of a club. Except the dues, some of us pay with our lives. Others of us pay with life long anxiety of what the future holds, a PTSD of sorts. As time goes on, the fears nestle themselves into the corner of your brain. Never gone, but laying dormant.

Fof those of you reading this who knew and loved someone on my friend list who has passed, I just want you to know that they were in my thoughts as I looked back on their page. I’m grateful to have known them and had them as a friend.

But for now, I push forward with my less is more way of thinking. My next goal is to make a list of 21 things I want to accomplish this year. 21 things that will improve my life and my outlook. I’ve got some thinking to do.

Trying to Recover

This week pushed me to exhaustion. I think the latest I stayed up was maybe 8:30pm. The sad part is that it will only get worse in the weeks to come as the company I work for is putting an addition on the building and to say things are a shit show is putting it mildly. Things are being moved around, walls have been torn down creating a haze in the air, a lot of people coughing and trying to get the layer of dust out of their mouths. My contacts continously were dried out and everything was just dirty.

On the bright side, a cat made its way into the building and it’s like have pet therapy. She’s a great cat, comes when you make noises, wanders around loves to be pet, and is just a sweety. Silver lining, I suppose.

But on to other things. I’m trying to figure out some things in my life and am not having a lot of success. It would be easy to continue on the way things are. That is why they say change is difficult. Because it is. The unknown tends to hold a lot of power. And with that power comes fear. And with that fear sometimes comes deciding not to change. And the vicious circle starts again. And again. So how do we take that leap of faith when there is a lot on the line? I don’t know, otherwise I would’ve done it by now. Believing in yourself is hard, at least for some people. I am “some people”. I’m not sure what created me to be this way. Maybe lack of support or maybe past failures. I don’t know….

What I do know is I am capable and I have some brains rolling around in my head, but what stops me is the “what ifs”, the “then whats”, the failures at other expense. Security is defined as the freedom from fear or anxiety. What I don’t see in that definition though is happiness. I guess it just has to be something that is weighed out. I wonder what will win the in end.

A Moment to Complain

This is a picture that I took of the youngest a few years back and it captures the essence of how I am currently feeling about the lack of communication with my medical team. I sent a message through the portal a week and a half ago and have heard nothing yet. A week and a half. Frustrated is not a strong enough word. That was one specialist. I sent another message to a different specialist dealing with a totally separate issue and it has been three day (thus far) and again….nothing. And I don’t think I should even begin to voice my opinion on the fact that I was basically forced to get a primary doctor, with whom I never actually see because appointments are 3 months out. I think I’ve seen her once (my initial appointment with her) in the year and a half that she has been my primary. Don’t get me wrong, I like her a lot and think she is a great doctor, but I never can get in to see her. Like, ever.

So, tomorrow at my lunch break I will bypass the portal and make a phone call to the first specialist. The second will have until Friday. Do you hear me medical world?! You have until Friday. Ugh…..