I don't know the whole story and I'm not going to try to share it because leaving out parts can make it seem even worse than it is, but after months of not feeling good and test results that didn't make sense but ultimately were declared "nothing" my mom's good friend/unofficial member of our family had a scan today that detected results the prior scans didn't. An appointment was made for him at one of the top specialists in oncology of the specific organ that is involved for Thursday. She'll be taking him; at least she's getting good at finding the hospital. But it looks to potentially be very serious and I am afraid.
Wednesday, June 25, 2014
Friday, June 20, 2014
Laying around
Still here, still laying around. I saw the dr. Wednesday and got the Bigfoot cast off and a more normal cast applied. The effects of following the bedrest/elevation orders are immediately obvious as there is almost no swelling or bruising. The incision is pretty big and I'll have quite a scar but who cares? It beats being braced and certainly beats repeated injuy. The dr. seemed pleased. I liked him this time. It appears he likes to do surgery. He doesn't like to talk about a theoretical surgery but he'll happily discuss once he got to cut. They did a lot of clean-up in there, tightened ligaments and tendons and sewed it all back up. He said 8 weeks until I can start putting weight down. That's better than 12 which is what he told my mom Friday. I'm in my first cast now and that comes off in 2 weeks for stitches to come out and then I get another one.
I can see now why he does things differently. Usually the bigfoot dressing is on 2-2.5 weeks and then is removed, stitches are removed and the cast is put on for the rest of the time. My doctor is more tightly controlling how much movement I get by never letting a cast get looser from decreased swelling. The cast is even done differently than a usual ankle cast. It goes completely over my toes, which has made doing stairs really hard and scary (I call it my flipper) and it is contoured so that there is an arch to my foot and around the foot it is form-fitting. It is much bigger in the ankle where I have a lot more padding over the incisions (2 on top of my foot and the big one on the outside of my ankle) and then I have additional padding on my heel because I have 2 stage I pressure sores there. I apparently was propping my heel on things and didn't know it because you can't feel it through the Bigfoot thing (or the flipper either) and so I have to be careful about that now too. Tuesday, June 17, 2014
That will do it
Today I had a really upset stomach and lots of bathroom trips. I didn't eat much and just felt lousy. I also was wide awake since 7:30 AM. Part of this was because my nerve block shifted and started working far too well so that my entire foot went numb until I called the pain center and turned it off. They said I could put it on again if I needed to but I have been ok and it was coming out tomorrow anyway if all went well. So I guess that is one thing taken care of. But if just was a rough day and I thought it was the pain medicine. Until I got my pill box and discovered I didn't take my meds last night. So I was in benzo withdrawl and probably fine otherwise. (I just feel gross because I haven't been able to shower since Thursday and sponge baths are only so good, but it adds to feeling sick I think. Plus I'm hot then cold then hot again despite having the air conditioning at freezer temperatures. I'm assuming this is from anesthesia but it's annoying.
Anyway, lessons learned: nerve block wasn't doing as much as I thought although it was amazing the first day and a half; I hate having a numb foot; sometimes my ankle wants to be elevated much farther over my head than is required and that is to be obeyed at all times; take your sedatives and addictive meds daily. Sunday, June 15, 2014
Bedrest
I have nothing really to say. I slept through a pain med time last night and so spent part of the day catching up on the pain. Thank God for the nerve block pump, even if it is annoying to be attached to something all the time. (There is a catheter similar to an IV in the back of my knee with all kinds of stuff covering it. There is a tube that goes from the port on the catheter to a bag the size of a small purse that holds a bag that started with a liter of anesthetic. This automatically gives me a dose every minute or two and has a button I can press to get an extra, bigger dose. 10 minutes after the extra doses is when I feel best but I can only do one every 70 minutes and it looks like I can't do it every 70 minutes without running out of solution before the pump comes out on Wednesday. It's annoying because I easily forget that I have a long line coming out of my leg but it helps a lot. I'll miss it when it is gone. Which I'm sure my doctor will be very happy about since he won the argument about having this at all. I wish I could keep it another week or so.).
Here is a picture of my current dressing/cast (really casts; there are plaster casts and fiberglass (normal) casts both under there. At the widest it is about 10 inches across. I've been good enough at keeping it up that my toes are now way down far below that cotton at the top because gravity has my heel further down in the cast. Saturday, June 14, 2014
Survived
I am home from surgery. I'll tell more later because I'm getting sleepy and it's time for meds but it went really well. The things that were damaged were fixed and the ortho told my mom that I will have a great prognosis as long as I am good with following the instructions. So 2 days of laying in bed are done, 3.5 more to go and then I'll only be in bed 23 hours per day or something like that. I did wind up with the nerve blocks (3 in total; 2 for surgery and one of those was supposed to be left in for 5 days but it quit working this morning so that my pain went from 4 to 8-9 in about 5 minutes (the first number was from before I tried to move) so I got another one today that has me totally numb. I know there is space in my cast to move a little but I can't wiggle my toes yet, much less move my foot or ankle. This seems to be starting to wear off a bit but I don't know how strong the block will remain until it comes out Wednesday (or sooner if i choose). I have made it to the bathroom alone once which was great (it takes some extra effort because not only am I non-weightbearing but I have this bag a bit larger than a clutch purse that contains my nerve block pump and it goes where I go.
So now begins 12 weeks of non-weightbearing and then I will start therapy and learn to walk without external support again.Wednesday, June 11, 2014
Too close
I am now so nervous that all I've eaten today was a granola bar at 7 AM. I have to find something to eat and nothing sounds good at all. Tomorrow night I'll be starving about 12:15 AM so I need to eat now and try to remind myself then that I ate plenty today, but I just can't figure out what I want. Oddly I really don't feel anxious beyond what I've been feeling but I think the stress of my cat's illness combined with this has left me not hungry at all.
I did have some success with the cat. She is very happy to have a litter pan upstairs. I'm not, but hopefully it is temporary. She is still vomiting and yesterday the vet said the med for that had to be given orally or in a shot. I suddenly remembered today being told that it could be given transdermally (the med goes on the skin inside her ear) and called them after I found a place that sells it that way. Sure enough they can get it and so next week she'll have something to help when she feels sick. This is certain to ensure that she doesn't vomit again for a year, but I really want her to have a good break from feeling sick. She has been a little less lethargic today and has wanted cuddled a bit which is good. I'm coming to terms that I have to accept that she won't be here forever. Which is just hard to consider given that she made it 19 years so far. After she got that old I somehow stopped thinking she'd ever be gone. In contrast I got my other cat and another that died when she was 7 because I knew cats don't live THAT long very often and I wanted to have established pets if she did die. Now she's almost outlived that age by twice the factor so that joke is on me. But I know that first we have to stop the vomiting so she stops losing weight. Time to break out baby food and possibly my own homemade kitty tempting but disgusting chicken livers and gravy puree that they love but is oh so very gross to make and smell.Tuesday, June 10, 2014
So tired
I have been doing so much trying to be ready for surgery. I know that if things are out of place it will irritate me endlessly so I'm trying to finish. Today we loaded all the moving boxes up and took them to recycling and finished unpacking the garage things (the last boxes). I still need some shelving units though but I should be able to park in my garage now.
However I am tired and keep getting migraines because I had to stop the magnesium that I take for prevention. To top it off my old cat (age 19) has suddenly been peeing outside the litter box. I took her in for what I thought was a UTI today and while it is a UTI it is mostly kidney failure. That diagnosis has come and gone repeatedly but this time it will stay. It's not that advanced but is enough that it isn't just a transient dehydration. So we had labs done and prayed her was a treatable thyroid problem but it wasn't. I can't afford kidney food for her and don't really want to take away the food she loves anyway. I set up a litter box in my bedroom with that litter that swears that it clumps into a completely non-smelly ball for 7 days. Either I haven't found pee that was already on the floor, the new stuff smells like pee or it doesn't cover any odor because my bedroom (where the littler is) smells like pee. I think I probably just haven't found some pee yet but I also don't like the smell of the litter. I want the pan there because it is where she mostly pees but not if it is going to smell. I have no idea where else it can go though. That's the problem with a tiny apartment. Anyway, I cried at the vet's and for quite a while afterward. When the cat is 19 you know you don't have forever with her. And in fact the average cat with her level of kidney failure lives about 2 years. If she lives 2 years she'll be extremely old. So it's not like this really changes anything, I just hate that she doesn't feel good. When the antibiotics kick in she will feel better again. I hope. Usually she only has about 10 really active moments per day so this is hard to see but she is lethargic and that's sad.Anyway, more tomorrow I'm sure.
Anderson Cooper tries hearing voices
This video is really neat because of the level of dysfunction he shows when it is clearly not his baseline.
http://www.cnn.com/video/data/2.0/video/us/2014/06/09/ac-dnt-schizophrenia-simulator.cnn.html
Oddly it also made me realize how much more I used to hear voices than I knew. I still do sometimes and I have to be careful not to talk back to them in public but watching him I kept thinking "but the worst part is that you get USED to it". Which is horrible to think about because he struggles so much with simple tasks.http://www.cnn.com/video/data/2.0/video/us/2014/06/09/ac-dnt-schizophrenia-simulator.cnn.html
I'm glad they did this. It wasn't really a schizophrenia simulation as they stated as it only really dealt with one symptom but it was still interesting.
Monday, June 09, 2014
Decision
I have decided that I will talk to the anesthesiologist about the anesthesia-only nerve block but I do not intend to get one. If he (I hope it is he as I want a specific doctor) is completely convincing then I'll reconsider but the reality is that I know my body better than they do and I know that if I would do this and become agitated I would not forgive myself for the absolute misery I would endure. I feel much more at peace with the idea of dealing with more pain. And really that pain will only be worse for a few days. The nerve block was only for 3-5 days at best. I keep thinking that I often get agitated when I have dental work done and I'm fairly sure that it is a great deal less medication to numb part of your mouth than it is to numb your entire leg from the knee down. My preference is to repeat what was done with my hysterectomy and to have a morphine pump and wean off that over a couple days. I don't know if my preference will matter there, but that worked extremely well for me and it's always good to go with what we know is good. I also question what benefit numbing my leg has when the purpose of the traditional nerve block is to decrease swelling and bleeding, which won't be affected by this other thing.
I see all these ways doctors may be unhappy. They are going to feel like I did my own "google education". This isn't true, they told me the name of the drug and I looked it up. Based on what the profile says I'm not comfortable. And while my reasons probably will sound extreme to them they've probably not recovered surgery much more minor than this while not sleeping, not eating and not being able to sit still, at all, ever, no matter how much medication is given.Thursday, June 05, 2014
Ugh
I am so annoyed with someone that it is nearly positive that I'm exhausted. (Dr. Mind, groceries, unloading MANY groceries, making a soup to freeze, puppy to lake to play but cut short by ill-mannered pet owner and dog who jumped on our puppy and held him under water so we took a walk and left, ball with puppy, putting away 20 tons of groceries, etc). And I've been sleeping a lot lately and didn't today so that probably adds to it.
I have a cousin who tends toward self-importance. One of those people it can be hard to be friends with on facebook because whatever you post he will try to top it.
In trying to make a decision about the nerve block thing (90% sure no but still gathering data and can't make a final decision until in the OR) I posted on facebook that if any of my nurse friends have experience with peripheral nerve blocks through working in OR, recovery or ortho could they please contact me. I really hoped for a professional. Instead my cousin posted and so now people are less likely to see it and think "Oh Jen hasn't had a response, maybe I can help" and believe me, at this point I'm way past wondering what other people experienced. I mean, I care, but my issue is very different than other people have going into this so most people aren't going to have experiences that provide any help to me at this point because most people don't get as easily thrown off course by meds as I do.I have a cousin who tends toward self-importance. One of those people it can be hard to be friends with on facebook because whatever you post he will try to top it.
What would you do?
This is a 2nd post in a few hours so be sure to scroll down.
Here's my dilemma:Wednesday, June 04, 2014
Sand castles
I am actually doing pretty well right now. The awful pain from after my brother was arrested has changed to just an ache and sorrow, knowing that at some point the next step (being arrested and charged with whatever he is really charged with) will come and bring new waves of pain, but for right now it is the same as it was 2 months ago when this started and I can live with it. Trying to make myself see him as a human instead of a monster has been really helpful. What he is accused of remains monsterous but he is still a human. I think it is likely that this will be what is hardest to cope with throughout the entire process. Other things are stressful, like surgery (gulp), but I'm doing fine and actually have been sleeping many hours per day. I don't think it is depression, I think it is my body recovering. I'm even off of the valium.
At the beach last week my older niece built a sand castle. Unfortunately high tide began to come in and threatened her masterpiece. For a while it was held by a moat her father dug around it but eventually it began to crumble. And so I watched that little girl run and grab handfuls of sand, one after another and throw them on her castle, working as hard as she could to patch it up and keep it together. She actually was quite successful and the castle held up to the tide for quite a while. Monday, June 02, 2014
Here goes nothing
I have about 3 posts brewing and honestly I just haven't gotten turned back on from vacation. I had internet but had a hard time with low speeds so I just didn't use it much. I needed that kind of break from it. The internet becomes too much sometimes. It was wonderful but the last day we drove home which was something like 14 hours in a car, mostly at night which was great for the kids but I got only a few hours of sleep and then I got home and could not sleep so I was awake for most of 38 hours. I then slept most of Sunday then had a migraine so I was knocked out by the meds for that and slept another 10 hours or so. Then I drove to Cleveland and after being lost saw Dr. Brain then got lost again (and you have no idea how stupid this was; I was lost for an hour before it occurred to me that I was not going to the right block of the street I was on). Then I ate supper and napped. Tomorrow morning is pre-op and then I see Dr. Mind in the evening. So I am just getting back into life very slowly because my routines aren't worked out yet. Which is fine, but I just haven't felt like doing much, blogging included. I took a break from nearly everyting online while away and it was good.
For now I am worrying about one part of tomorrow. I am supposed to have a nerve block for pain control after my surgery. From what I've read nerve blocks contain epinephrine and a steroid. Epinephrine interacts with Emsam in a way that mostly can be controlled in an OR setting (blood pressure stuff) but it also can cause agitation. Steroids ALWAYS agitate me. Since recovery is rather dependent on my ability to sit very still for several weeks and have limited mobility for a long time I am not willing to take that risk. So unless they can promise me a nerve block without either of those things I'm refusing it. Frankly I've read some things that sound like it can sometimes be pretty unpleasant anyway (sometimes it is great, sometimes it is pretty uncomfortable as sensation returns). I'm used to working with my doctors. This isn't the same type of relationship (this is a random anesthesiology resident/anesthesiologist and due to some kind of confusion I'm not yet set up as an MAOI anesthesiology patient). A week gives them enough time, but I'm just going to be a little bit of a surprise probably tomorrow and then I'm going to refuse a treatment recommendation from a surgeon I have no relationship with at all. I suspect he will be frustrated and annoyed by this. I don't care what he thinks; I know what these meds can do and I know what it feels like to be mobile post-op and unable to rest or sit still no matter what doses of extremely strong meds are given (I was at one point on 1200 or 1500 mg of Seroquel and 10 mg of Zyprexa plus generous helpings of Klonopin, atarax (like benadryl), and I believe benadryl and I think something else. HUGE amounts of sedatives and nothing could stop me from pacing constantly. This time I have to be reclined with my foot in the air for 2 weeks all the time and then gradually decrease that. If I am agitated it will be absolute torture. So I am not allowing that risk to be taken. But it is very intimidating to do this. I don't mind telling my usual drs. that I am uncomfortable with some treatment or another but strangers and this weird surgeon concern me. But they'll just have to use pain meds to reduce my pain and I will avoid the psych unit while immobilized.
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