One week later

one of four types of hosta in my yard

*230*

  I am here. I am alive. I assume you know that because I am still posting on IG. Today is one week since my breast cancer surgery. I had a bilateral (both breasts) lumpectomy to remove cancer on right and radial scar on the left. The surgeon only removed one lymph node which is amazingly good. Really good. Means no spread there. I have to wait 3 weeks for the results of my Oncotype test. Lets pray for a very very very low score. We dont want no chemo over here. I see my surgeon on Thursday for post op. I see my onco end of the month. I start radiation after I am healed in 6 weeks. So we are looking at the end of June. Then I do that for 5 and 1/2 weeks. That carries me to the first week of August. Then I will start the hormone blocker meds after that...five years of that bitch. Hopefully the symptoms wont be too bad for me. I am going to stay positive.

   I am healing very well. The steristrip on my armpit came off in my sleep last night. It was hanging by a thread. I trimmed it. No pulling off. It has to come off on it`s own or the surgeon will do it. The areas are so itchy but I just smack them and tell them to shut up. Literally just smack them like a tattoo. My honest opinion, lumpectomy surgery is a piece of cake in the surgery side of things. I took Tylenol for the first 2 days and then I was fine. If you are ever faced with this type of surgery, just know that it is not horrible pain wise and healing is super easy.

    I had to keep it easy last week but I did get some gardening done before surgery. The garden bed on the side of the house is filled. Kale, beets, cauliflower (a first for me), swiss chard, and lettuce. It is doing very well. I have three big pots filled with radish babies and I have three pots with a basil plant in each. Still too cold here to break out the tomato plants. I do not have a bed in the front done yet so I think I will do a couple cherry tomato plants in pots and call it a day. I also have my trusty pot of chives. She comes up every year. I did not renew my membership to the community garden and decided to just stay home this year. I am going to do some shade veggies and hopefully I will have garden beds built in the front by the Fall! Dammit! LOL..I did talk to a friend of Hubs. He will do it for me. I just want two 4-6 foot long ones and that is all. I will be happy.

  Yesterday was the last day of Breast Cancer Bingefest 2018. I had been basically eating whatever I wanted but not overeating, mind you. Gluten, sugar, rice, and just general crap. My skin tells the tale of my treachery. I realized a couple months ago that when I do not eat gluten, my skin clears up without any help from steroid cream or medications. Patient heal thyself. I had the last yummers last week and I am going to slowly fight the carb and sugar cravings while I get back into low carb. Last night I had chicken cacciatore with mozz cheese over yam noodles. Today, I do not know what I am going to make. Something with hamburger probably. Maybe just actual burgers on the grill with a salad. No bun needed. Put an egg on top of the burger.

  That is about it for me this morning. I have to get moving. I have let moss grow on my butt too long. I have to keep myself busy. Have a great week and I will talk to you later!

Health always takes a header at the end of the year

I know I already posted for this week but I have had some developments that I thought I would document.
First off, I finally got a appointment with the gastro specialist in Providence, Dr Colleen Kelly. I see her this coming Monday for a consultation. She will be the one that will do the fecal transplant (FT) for the cdiff. I guess she has to decide if I am worthy. I hope I am worthy! I have been told that I should also make a trip to Cheesecake Factory to pick up cake and apps for the children. The train station is right across the street from it. I will maybe oblige.

  Yesterday, I  had my MRI, which went fine. I only needed one of the Valium and I didnt freak out. It was basically a uneventful day. Did not take long for the effects from the pill to wear off. This morning, my neuro calls. He says that I have some flattening of my L5/S1 (the one i had surgery on). He says it looks bone on bone. But those are not the discs that deal with my hip issues. Since my ortho (that I have only seen once!) is closing, He is referring me to a Ortho at the Yale office. If they find that my hip pain is not for the Ortho to deal with, he will refer me to a spine surgeon. I said I am okay if you all say it is from getting older. Shit happens. But with my history, something that looks benign could turn out to be something yucky.

I just want to catch anything before it gets worse.

That is about it. My bacon and egg lunch is waiting and Kid #2 and I will take a walk after. Easy day cause AHS is gonna be THE shit tonight!!

Goodbye To You!

*237* <----I can explain!


  In the continuing saga that is my life, I have added a quick December chapter to 2015. I dont work in a office but Matt Bellassai is a hoot. I could use the laughs.     My gallbladder has betrayed me. She is full of stones, inflammed my liver, and making me miserable. Surgery is for this Friday. I had some weird itching that turned into bruising on my thigh. I am waiting the bloodwork to see if it is my liver complaining. It will be outpatient so I can whine in the comfort of my own bed. Dairy will never be my faithful friend again. BooHoo! So I am eating broths, jello, etc. Of course I am losing weight. Good thing but not the reason why.
 That is about all I want to talk about now. I got some bodily maintence stuff to do today. Hair, eyebrows, and a pedi. Gotta look fresh as I can for the surgeon.


Edit: I am propped up on the couch surrounded by pillows and I am watching cooking shows. My surgery was yesterday at 1130a and I came home at 530p. Nobody told me how painful this was going to be. I have had lap procedures before but the cuts in my upper abdomen hurt soooo badly. The oxy is not working long enough to take the next oxy. So I just endure. Tomorrow will be a better day.
Positive! My liver doesn't hurt anymore! For that I will suffer. You only have one liver and you have to treat her like a queen. 
 I am a doer so for me to be stuck on the couch sucks major. But that is okay. I will be a good girl.
I promise. 

Dads, Summer, Rain, and Free HBO

*243* <----I think.

  We had a ton of rain last night into mid morning from the remnants of a tropical storm. Let's just say I am not in the best of moods today. At least the rain stopped and it is cooler. Humid but cool. Since I am feeling so funky fresh, I decided to d/l the blogger app to the iPad. That way on days like today, I can not only say Hey in my pjs but also while lying down with the dog, butt to butt. She is a weirdo, I tell you. My laptop is starting to slow down so that will probably die soon anyway and I can replace so I will use my trusty iPad that I won in a contest. Yes...I enter contests. Don't judge. :)

  Today is the longest day of the year, Summer Solstice. Too bad it is not gorgeous here but that is okay. The plan had been to have grilled food outside while the Man sat in our newly acquired Adirondack chairs. Two for $20. Our back yard neighbor sold his house. The Man tightened the screws on them yesterday. They are like brand new. I always wanted those type of chairs but could never justify the expense. $10 a piece is just my cup of tea.  So we will cook meatloaf with mashed potatoes and a veg for his dinner. I am kinda supposed to make a dessert but there is no butter and this is broke week until Wednesday so we will have to make due. 

  I went for my post op appointment on Friday. My two friends, A and D, took me. We had a nice ladies day out. Except for the whole doctor visit. My appointment was early and I got right in to see him. I will start with the positive things. My incision has healed nicely. The scar will become less prominent over time. My ear drums in both ears look really good. The pain I am experiencing on side of my head is the product of the surgery. They had to move a muscle to the side while they were in there. That pain will come and go but won't last for very long. Good.

  Then we get to the gross shit. 

I do have Superior Semicircle dehesince aka SSCD or SSD. I have it on both sides of my head but my left side is giving me issues. I have developed a symptom called autophony.  Basically I can hear things I shouldn't in my left ear. I can hear my breathing, chewing, heartbeat, and my voice can amp up really loud but sound distorted. Outside noises can be very loud. Some noises can make me cover my ears like when plates clang together or when you drop change in a jar. The reason for this is there is a *third window* in your head from a hole that should be there. It screws up the way sounds travel in your head. 

  I also told him that I think I might still be leaking. Only when I go to the bathroom so far. I am three weeks out so I haven't been too strenuous yet. I will be able to tell once I really get back to my old self. 

Yeah...that is some peachy news huh?

The Dr has a *tell* when he is troubled by something you have said or pertaining to your symptoms. He made that face. He wants me come back end of August to see him. That will be three months since the surgery. If I am still suffering from these symptoms, I have to have a cat scan. He said if the autophony drives me insane or the leak gets worse, call earlier to have a scan sooner. 

How much am I supposed to take? 

Right now I have SSCD with IIH. These are both very rare disorders.  I see the neuro next month. He may say I don't have IIH after all. It might just be mechanical but something is making bust holes out my damn head! It is not like I am secretly a ultimate fighter champion in my off time. 

My SIL said that she wished we could do something for me. Part of me says yeah...my life utterly sucks..pamper me to forget it even just for a little while. But I am the type that is the giver. I don't like to receive. It would be hard to do that. 

We had a great time after the appointment. I was broke as a match girl but my girls had my back. We went out to eat at this place called Plan B burger bar. I have been before. OMG. The food was amazing, of course. But my stupid skull got in the way. It was really loud in there. All around us you could here people talking. The acoustics in the place put my vestibular issues in over drive. You feel like something bad is gonna happen to you. Like you don't feel faint but could I pass out from too much stimulation? It isn't a panic attack. Your head can't handle all the noise, lights, and movement. It makes you feel truly awful. Like...I gotta get the hell outta here!!! But we were eating. So I kept it to myself. I let them know at the end that I needed to get out of there. Once I got in the car and had my sugar free Sonic slush, I was feeling good again. Well. Good for me. 

So that is what has been going on so far. My brain feels like major crap today but it is weather related. I will be better tomorrow. I will lay here and possibly watch some free HBO. Or not. Lately I like to be in quiet rooms. Quiet car rides. Makes life simpler.

Have a great rest of your Sunday!

Summertime Summertime Summer Summer Summertime

*239*

  I will not complain about the temps or the humidity levels. I will complain about the barometric pressure though. It is making my heal time difficult. My head feels like it is in a vice grip when it rains. It is pretty awful. But the rest of the time, I have been feeling okay. Kid #2 and I have been walking almost every day. We are being healthy. I have a partner to changing our ways.
 I deal with something called Autophony. My internal noises are amplified in my left ear. Breathing, talking, and my heartbeat among others. Part of me worries about that but I will wait till I have my post op visit to see what the ear surgeon says. I did say from the beginning that this surgery may or may not completely heal the issue of weak spots in my skull. We shall have to see.

  But I am doing great considering  I had skull surgery two weeks ago. Our beds at the community garden are flourishing. All the lettuce is almost picked. We have about four heads left we will get tomorrow. I have a few tomatoes to cage and we will plant a squash in the empty space. I am very happy so far with the results.
 
This past week I went to the Habitat for Humanity ReStore just to poke around. I found a queen sized Iron bed complete (minus mattress and boxspring). Big head board and footboard! I am really excited. It was super cheap too. The man is going to pick it up this morning. I wont have that squeaky, dog scratched, old sleigh bed anymore. The bed of my dreams! Yeah!

I will take pictures of all when I get a chance. Especially the garden. It is looking so good!

I am feeling okay. I have a way to go to 100% and I will always have the brain disease or whatever is wrong in my skull but no worries.

Happy Saturday!

Weekly progress of the dome

*238* <---oh yeah oh yeah!


  Today has been a week since my CSF leak seal in my skull. I am better. We had cold and rain for two days and I felt pretty awful. The sun came out yesterday and I went out with kid #2. We went to DG and the community garden to plant peppers and eggplants. I think I was out for a hour total. It felt good to DO something. My head feels weird but that is part of the healing process. I am on no narcotic pain relief at all. I take some Tylenol for some ear pain. All part of healing.

  I have been sitting here all week waiting for the other shoe to drop. It hasnt. I am supposed to be experiencing rebound pressure pain in my head. I am sealed so there is no place for the extra fluid to go. So far, no pressure. It has got me thinking. Do I have IIH or something else?
 The something else could be what we thought I had three years ago, Superior Semicircle Canal Dehiscence.  This is something I will bring up at my Post Op appointment in two weeks. The neuro seems to think I dont have the IIH all along. I dont want any of it but I would rather be treated for the right thing from the start. They both have similar symptoms but with IIH the symptoms are all the time. I dont have that. I cant answer how my head feels right now because I am still healing. But there is no pressure at all. *knock on formica*

  My surgery was a success even though I am going thru healing mode. I am not over doing it so dont scold me. I have already heard it. Just because I had my skull opened up does not mean I am a invalid. Everyone heals at their own pace. Today I will do a couple things, eat some lunch, and take a nap. This is what I will do until that day comes when my ear doesnt hurt, the ringing is less, and my head feels 100% clear. I am clear enough to make decisions, drive short distance, buy cream for coffee, and cage my tomatoes. I just need to be close to home for rest and long distances require a chauffeur. Okay? Okay!

 Thank you for your thoughts and prayers. They have helped me alot.

Oh my aching head

Yeah, that is attractive huh? I dont have the donut anymore. That was just to catch the blood from the surgery. I am home. I am ookey but I am ok. I am not going to tell you everything right now cause my head feels like garbage. Later date. But it was a successful surgery. I had some positive feedback about my eating lower sodium. And I have to sneeze with my mouth open for two weeks. Oh and cant blow my nose. Or strain. Yup

Thanks for the prayers. I will tell about all that went on later this coming week. I will be less foggy. 

I will never pinkie promise!

*241*

  I totally forgot to post. Let us forever more blame my brain disease. Plus I have alot of shit floating around in my brain. Stuff to do. Stuff to fill out. etc. Apparently this song too. Back in the day (early 80s), I knew ALL the words to this song. All of them. I was cleaning house and I like to listen to my S.O.S Band channel on Pandora. Well, this song came on. It only took like two minutes for my brain to go to the back room to pull out this song. I still know ALL the words. WickyWickyWickyWicky.

   I had THE best pre-op physical appointment in the history of all pre-op physical appointments. My Endocrinologist/PCP walked in the room and gave me praise. He said he was proud of me and that he thinks of me differently (in a good way) from this day forward. He said that despite two doctors (him included) giving me the same diagnosis, I decided to advocate for myself. I got a 2nd opinion and found that I was correct. I had diagnosed myself. I knew what was wrong and I wasn't gonna stop till somebody listened. He has great respect for people like me. He is also very open to referring me to a immunologist after all this mess is done. I need some answers as to why I am always sick. There is a good one in Tarrytown, NY
I am fine. EKG was good. He took a bunch of blood work. He knows all about the diamox because they use it in that office. He is going to check my potassium and magnesium to see if I need a supplement. He made me feel better about the pill. I am not as stressed about all the side effects. My chickeny ass finally took my morning pill of it. I was scared to do it. A wise blonde friend told me to just take it! You will be fine. And except for my hands having pins and needles, I am not suffering any ill effects.  I guess my adult make-a- wish night at the casino isn't gonna happen. Oh well. All the high rollers must be busy.

  I go to see my surgeon Friday morning to talk about the surgery. It happens next Thursday. I dont know what time yet. They will call me Wednesday evening. I try to keep myself busy. I worked the beds in the community garden with Kid #2. I did some laundry. I have a apple crumb pie in the oven. Once the pie is done, I peel potatoes for dinner, and finish this...I will go upstairs to crash. My body is wrecked. The diamox is a good pill (diuretic) but it is a nasty pill too.


So there you go. I am sorry I cyber pinkie promised. I gotta remember not to do that. Ha!

April Showers bring May Surgeries

*240*


   Let`s see. Where to begin...My eyes are fine. The optic nerves are not being bothered. I go back in six months for another check. Yay!

  I had my sinus cat scan and the nose doctor says it is fine. There are no cracks or leaks coming from it. Yay!

  My surgeon called Thursday night to tell me the good news again. He said I have to schedule the surgery right away and I would see him on the 22nd to discuss what is going to happen.

   His assistant called yesterday. My surgery date is May 28th. Yikes! That is quick. I have a pre op physical scheduled for Tuesday morning.  Real quick.

   The new meds, Diamox, is helping with the pressure and  I am not foggy anymore. But I am so emotional. I run hot and cold. Sad or mad. I hate it. I am hoping this will pass the longer I take it.

So that is it for now. That is a pic of part of my front yard. I bought the flamingos today. They make me happy. I need some happy.

The good, the bad, and the ugly

  I have a very nice neurologist. He is being cautious. He has not diagnosed me with IIH yet. He sees that I have symptoms but the are intermittent. He wants to make sure my problem isn't mechanical meaning the cracks in my skull. He sees some irritation but wants the ophthalmologist to check while I am dilated, they will have a better view. He has put me on diamox, which is given to people with IIH. I will lower then clinical dose for now. I have to call him in two weeks to see if it is helping.  He did tell me that after my surgery, if I get a really bad high pressure even on the pills, to go to local ER to get a emergency spinal tap. Scary.
  I have a cat scan of my sinus on next Tuesday. Simple in and out visit. This coming Friday I have appt with a new eye office. My eye dr is a optometrist and I need a ophthalmologist. They are medical doctors that can do surgeries. When I called she said I had to wait till July. When I told her what it was for she had June. The she called back 5 minutes later to tell me poked around and found one for this Friday. I am very fortunate for that.
  He doesn't want to christen me with IIH until he is absolutely sure. It is a rare, incurable, and devastating disease. I am still in denial.

There are no breaks to give

*244*

 I should have posted sooner but my brain needed a rest. The news is not good. I will definitely need surgery on my left temporal bone through my mastoid. The mastoid is full of fluid. Brain fluid. They also think I have a crack in my sinuses. I have to go back to have a nuclear medicine scan for them to detect that. I have been told by two experts that I probably have the IH. My ear dr got three doctors in the Dept of neurology at Yale to take me on. They are supposed to call today. The nose Dr called me today to tell me about the sinus scan and she said she will push whoever to get a call to me asap. I dislike the letters ASAP. On the one hand it is good, you are being taken seriously. On the other hand, holy crap.
 Two surgeries. They cant do them at the same time. The sinus surgery will require a 3-4 day stay in the hospital. They have to keep your head pressure down so that the seal can cure. Sounds delicious.
 My head is killing me today and my eyesight sucks so i will leave you to this. I will report back later.
Peace!

End of Winter?

R.I.P.

*253*

  Eating pickle spears and sweet pickled peppers

I am in a better mood today. But this post will be short. I will explain in a bit. I had a meltdown yesterday but after some talk with Hubs, I realized I have alot on my mind. Too much really. I will be okay in that realm.


  It is gonna snow tomorrow afternoon. I am not even gonna bitch about it. 4-8 inches. Yup. 

Taxes. I may do them tomorrow. I may not. We shall see. We will owe so I am avoiding like the plague.

 I could just lay around and watch Hulu Plus or try to read 50 shades of Grey again. I fell asleep two chapters in. Jane Eyre is better and she never makes me fall asleep. That says something about that book. 

 I have been trying to keep my stress eating down to a minimum and eat healthy things. Today it was a handful of ginger snaps, 5 Doritos chips (kid had control of my portion), and those pickles that are mentioned up top. But I also have a box of Russel Stover Chocolates in the cabinet.

My symptoms have gotten worse this past week. They are not WORSE but they are slowly ramping up. My hands are giving me trouble. My legs are heavy and a bit weaker. My neck hurts all the time. It gives me headaches. It makes my shoulders and collar bone hurt. And I had a scary thing happen today. I had a electric shock cattle prod thing on the right side of my head. I remember those from when my L5 was bad. But it was in my back. Having in head sucks major.

It looks like a herniated cervical disc would be the best option at this point. I have read about Spinal Stenosis with Myelopathy. If that isnt me, then I am a monkey`s auntie.  March 21 isnt coming fast enough. Stupid tattoo that I really like. LOL



Yeah.....

Speaking of Aunties, you should check out Auntie Fee. She has a Facebook page but I like to just go to her Youtube videos. She swears but she is funny and she cooks. She cooks for people that have very little money. I repeat. She swears. Quite alot. The guy behind the camera is her son, Tavis. He gets her riled up so easy. It makes us laugh. But I learned some new ways of cooking old favorites. 

The kid just gave me 3 tiny pizza bagels. The eating continues.