Finding a New Normal and Redefining Boundaries

I’ve been home in Wyoming for almost a month now and it’s been a challenge to find a new normal. I’m still tired, my sleep schedule is off, and I’m generally feeling sad, I guess. I have a lot of things I’d like to do, and I can do them, but I’m so overwhelmed by all of it I don’t know where to start. My house isn’t my house right now, my garage is full of not only things we brought back from Salt Lake City, but also most of the contents of my oldest son and daughter in-law’s apartment; they are living with us temporarily. The old fat cat is back to living in my office, and generally being a pain in my back side with her crankiness. That means my office is a hot mess instead of being a place I can go to decompress.

Nothing is where is should be, or at least that’s how it feels right now. Things don’t stay where they belong, or things are just left where they are set down and left for someone else to pick up. Then my husband likes to tell me about, and sometimes even shows me pictures of, the infractions of the other inhabitants of the house, which makes me feel responsible. I could tell him to handle it himself, but there is a part of me that doesn’t trust that he’ll do it in a way that won’t make things worse. As my oldest son would say “that sounds like a you problem” and it is my problem.

Are there things my husband could do different, of course, but at this point I simply don’t possess the patience for him to figure it out; it’s easier to do it myself. Spoken like a true control freak some who know me would say, but no less true right now. Emotionally I really can’t handle much more. My plate is full dealing with my own inner dialog and trying to help maintain the emotional stability of others around me. It can be emotionally draining a lot of the time. So much there are days I’d rather just stay in bed and sleep the day away and let everyone just fend for themselves and stay out of the drama.

Of course, burying my head in the sand and not dealing with my surroundings isn’t helping me move forward. After speaking with my therapist this week, I realize I need to set some clearly defined boundaries and expectations, then follow up with consequences if those around me chose to over step. The boundaries and expectations aren’t the hard part, it’s how do I impose consequences for the adults around me who really should know better.

Right now, I’m feeling like I need to just take a step back and take care of me for a little bit and do the things that make me feel better. If anyone wants my opinion, I’ll be happy to give it, but there will be no more unsolicited advice from me, not that any of them have ever listened to me anyway, so, why waste my breath. If you’re not living in my home, I don’t have anything to say about how you live your life. In my home is a little different story since I have to live here after you move on.

I tried to address the boundary conversation with my husband today and unfortunately it didn’t go very well. It kind of makes me dread having to broach the subject with the other folks in the house. I know it needs to be done, I just don’t know where to start.

My Scale is Evil!

I’m having a minor disagreement with my scale, it says I weigh more than I want to. It’s a problem a lot of women have, I just have it for a different reason. With congestive heart failure comes water retention and I fought that battle for several years. Now with a new heart the battle continues. Not to the same degree, but it lingers just a bit, enough to make me hate stepping on the scale every morning.

For all intents and purposes I’m “dry” according to the doctors, however the scale would argue otherwise. I don’t eat enough to maintain this weight; my medication knocks out my appetite. And the food I do eat is healthy, so, I’m not eating a gallon of Rocky Road every night. Unfortunately, a touch of anemia has left me a little tired the last several weeks and I haven’t been getting as much exercise as I’d like. Regardless, I’m tired of the extra pounds and would love for them to disappear.

There really isn’t anything that can be done about it right now. I’m still on that vile drug, Prednisone, and it causes your mind and body to behave in the most strange ways. Among a variety of awful side effects, “changes in the way fat is distributed in the body” is one of them. Now if the fat could be distributed to my rear end maybe I wouldn’t complain so much! I know my weight isn’t permanent, it’s just uncomfortable.

There’s a possibility I may own only one size of jeans in the future, but for now I’ll keep a variety of sizes just in case.

My Little Sidekick

Thor-man after his hair cut.

My furry little friend has been the subject of my photo of the day for a few days now. It’s so nice to have my little sidekick with me again. It’s been six months since Thor and I’ve been together and we missed each other. He’s transitioned to apartment living really well and seems to be enjoying our trips down to the doggy area a few times a day, not to mention the car rides. Having him here helps me feel better when my husband’s not in town; I’m not as lonely. He’s such a sweet boy, and although he looks like a puppy he’s going to be seven years old on April 22nd.

I was worried he wouldn’t remember me and maybe not recognize me because my heart beat is so different, but that wasn’t the case.

No, I’m Not OK!

Physically I’m fine…don’t get your knickers in a bunch, emotionally I’m NOT ok. There is only so much a person can take before it’s just too much. I don’t even know where to start. I spoke with the psychiatrist today and we both agreed that I don’t need to be medicated and that my current state of mind is very situational and not chemical. Well, chemical in the sense that the transplant team keeps messing with my medication, but beyond that I don’t have a chemical imbalance that is affecting me mentally.

So, what’s my problem?

I want to go HOME! I’m tired of this little apartment and being by myself. There is only so many episodes of the Kardashians a person can watch and the Real Housewives of New Jersey sucks! I’ve already watched the entire series of M*A*S*H, West Wing, and the last season of Shameless. I miss my dog, and I know that sounds stupid but I haven’t seen him in six months. My meds are off, but I’m not sure how. My head’s been feeling fuzzy like I’m drugged (technically I am but I shouldn’t FEEL it), and of course the transplant team immediately said I should talk to the shrink! I lost my appetite about six or seven weeks ago so if I don’t “force” myself to eat I don’t, I’m just not hungry most of the time. I’m still retaining water but my heart cath results would suggest I’m dry, however I can gain and lose 5 to 10 pounds in 24 hours. My head is still the size of a watermelon because of these stupid steroids and probably the reason I’m retaining water. Sprinkle in some family drama and I’m pretty much a mess at the moment. Oh, and did I mention I’m lonely? That sucks too…

Most of this is temporary, I know, but that doesn’t make it any less painful at times.

22 Weeks and Counting

It’s been 22 weeks since my transplant and in some ways it feels like a long time ago and in others, not so long. With any luck I’ll be able to go home to Wyoming next month, but that’s assuming they can tweak my medication properly and my next heart biopsy comes back with no rejection. The one thing I’ve learned about the transplant team here at University of Utah is that they are extremely conservative; I’d be shocked to hear they let anyone go home before the six month mark.

To say I was getting bored or was lonely would be an understatement. There is only so much you can do in 680 square feet. Of course I can go out, I’m not sequestered to my apartment, but going out by myself isn’t a whole lot of fun. I really just want to go home. I wouldn’t be lonely there and it’s never boring at home. My husband is bringing my dog for the last few weeks I’m here. We didn’t bring him earlier because I had to be healthy enough to take him outside every few hours. I’m up for it now, but wouldn’t have been a month ago. Having him here will help a lot when I’m by myself and my husband is back home working.

My next heart cath is the 26th of March and assuming I still have no rejection and my labs look OK we should be talking about when I can go back to Wyoming! I feel great, tired sometimes, but otherwise significantly better than I have in about four or five years. In addition to the transplant going well, my Amyloidosis seems to be staying at bay for now. My light chains…the kappa free light chains and lambda free light chains…are at an all time low. Those are the little proteins my bone marrow can over produce that cause lots of problems. April 13th of this year will be four years of remission; not bad after getting a 6 to 18 month prognosis to start off with.

Beyond remembering when all my kids were born and married, plus my husband’s birthday and our anniversary (which I’ve historically gotten mixed up!) I have my own birthday, plus my stem cell transplant date (April 13, 2015) and the date of my heart transplant (October 8, 2018). It’s all too much to remember, maybe I should get some of these dates tattooed on my body just in case…LOL!