Endochronology Appointment Results...

Went to the endo yesterday...he feels that recovery is not going so well...Ends up my cortisol # is low (5) and he wants it 10 or higher...so I had to do some blood test where they take blood and then give me a shot and then take my blood again at 30 and 60 min intervals. He said with the symptoms I am having it's most likely a hormonal inbalance and I will have to start on HRT.

He called back later in the afternoon...the fact that I am still on prednisone skewed the results....BUT he says my baseline was 7 yesterday morning (still not up to 10 that he wants...and prednisone actually increases it)...then at 30 mins it was at 12.7 (he says not as good as he would like) and at 60 mins after the shot it was 19.3 (not good enough)...BUT he wants me to redo it first thing Monday morning...wants me to fast for 12 hours with nothing but water (what? No coffee???!).

This shot he gave me was like a big ol adreneline rush...then I crashed HARD and ended up sleeping for almost 2 hrs.

We will see what the results of Monday's tests are...If Monday's test ends up less than 10, we will have to repeat this other test...

This is the reason I have so much fatigue and hot flashes / sweats... Hoping this test Monday shows good results, but the dr said that he doesn't expect it to considering the symptoms I am having... BLECH!

Somethings Surgery has Taught Me

I have been very far behind in keeping up with my blogs. There are so many things to talk about...but a realization hit me in the last couple of days...that surgery has taught me to slow down, enjoy life more and relaxing and taking time to care for myself.

I have just realized that taking time for myself was so very important. Today I tried to keep up with my "normal" routine (pre surgery days LOL). Everyone keeps telling me I deserve it and I am truly beginning to believe it. It's strange though because I don't know if it would be seen as selfish?

Andrew and I have been taking time out each week to be together without the children. Sometimes its only an hour, sometimes its longer...but it's nice! And I think it's helped destress us both.

I have been taking more time to just enjoy the children...Today Tyler and Zac and I made homemade playdough...even colored it which they thought was amazing! (I had food coloring on my hands so I couldn't take pics :( ).

I have lots of other things to blog about....here and on my other blog, but I don't know when I will get around to it and then it will be old news, but I still want to get it up there so when i read back through our year...I realize that yes, we have overcome obstacles and it's made us stronger parents, individuals, as a couple and as a family.

I guess I am feeling harmony...who ever knew that taking time for yourself and trying to relax a little could make such a big difference in someone's life...Yes I was forced to learn to do this and now I know what I was missing - and why it is important to take that time both solitary and with my spouse.

Ok, Sappy section over -

MRIs ... before and after

ETA: AH HA! I got the other films to cooperate...
AFTER

BEFORE:

I've been so busy with life in general. I have been feeling ok some days and other days not so ok...BUT I had a follow up MRI yesterday and was able to get copies of the MRIs all the way back to August so I can show you the tumor....It really doesn't seem that bad when I look at it like this...it sure doesn't appear to be 2 1/2"...
So here I have marked the tumor

Here is the picture of my pituitary gland (the bright white spot I outlined)...you cannot see it (maybe a little) in the above picture because the tumor was suffocating it...


I know these are not the exact duplicate pics...I have those but I can't seem to get those copied off the CD in the right order...

Well sounds like things are going to get crazy around here with Andrew being off work and starting the day....lets say...NOT as a morning person and it's really annoying the crap out of me...

Last of the Lab Tests...

I got my cortisol labs back tonight!!
Cortisol morning my level 5.0 "normal levels" 4.0-22.0 ug/dL
that was the last one I needed so it's looking like everything is 'back to normal' and fine so far as hormones go. Now that I have all my labs done I can make an appointment to see the endo...Hopefully I will be able to schedule him either for this Thursday after my MRI or the 1st when I'm there to see my neurosurgeon anyhow...

So good news today...

I thought the day was starting off well...but I was mistaken...

We went out and ran errands...Got quite a bit done--many things off the list!

I finally got my cortisol drawn (it will be about 48 hours before I get the results) then we headed to Target to spend a gift card and buy some essentials (and some not-so-essentials!)...and ended up pretty much walking the whole store. I was feeling pretty good but realized that I hadn't taken my prednisone when we left the store and I felt like I'd been running all day (it had been about an hour of walking). I opened the vanity mirror because my face was feeling swollen and was dismayed to see that my left nostril was swollen nearly shut (no wonder it was starting to hurt) and my nose looked super crooked and broken! It wasn't like this when I started out this morning..but hey at least my eyes weren't black...I can't believe just the simple act of walking around the store would make my nose swell like this...when my nose swells up it causes dizziness and pain and makes my vision problems worse.

The next few errands I didn't need to get out of the van..Andrew and/or Robert were able to just jump out of the van and drop off things like the redbox, the water bill payment, into the bank to make the deposit...BUT we still had to hit he grocery store.

At this point there was no way I would be able to walk around the grocery store, I knew it would be too much for me...It just really sucks ... I was so proud that I had been able to increase the time between percocets to 5-6 sometimes even close to 7hours...but then my balloon I was riding deflated...I can only go that long if I sit often and don't do much of anything...I can do simple things...like loading the dishwasher, changing diapers, starting a load of laundry...but when I am home and doing those things I can sit down every few minutes (and do sit down every few minutes)...I ended up having to take my percocet after just 4 hours...(and if it didn't have such an awful effect on me if I take it closer, I would've taken it after 3 hours because I was hurting)...I really thought I was better healed...and it's just depressing...

We get home and I'm pretty wiped out...Had to get into recline position. Tyler was due home any minute from school, Robert wanted to disappear to his room, Andrew disappeared and I had no idea where he ran off to...Zac had slept in the van while running errands so I knew my 'recline/relax' time was going to be short. It lasted less than 5 minutes. I felt like crying...

Oh I left this part out: When riding along with Andrew driving I kept *gasp*ing and cowering and yelling at him to be careful...he lost it and yelled at me to stop it. I can't help it...my depth perception (or something in my vision?) is off enough that when I see a car in front of us...along side us...making a turn...whatever it freaks me out because it looks like we are about to be hit. I wasn't trying to upset him...I was just so totally freaked out (and this is why I've not been going many places the last few weeks)...so I decided to start cruising the web on my cell phone so I didn't watch the 'action' around me...Good thing I added that to my cell phone plan...I just got to remember to do that as soon as I get into the van so that I am not upsetting whoever is driving...Kelly won't even let me ride with her because I make her too nervous...

But that was just the start of a pretty nasty argument that continued at home...I will put that on my other blog though since this story is so long already...It's not a pleasant story so y'all may not want to read it...It will probably make you wonder or think that my husband is a bad person...he is not a bad person, he's just overly stressed ...

I just wish my recovery wasn't going so slow...after I explain what happened during the argument at home after we got back...I will come back and do another post about how it made me feel because I feel like a lot of it has to do with my surgery, recuperation and limits :(

How my appointment went...

It went well...I hate that he was in such a rush...but I have to see him again soon.

I asked him about release to work and he asked if I felt I could...I explained thatI felt I could do it just fine...and the things that require bending can be done by my husband, so he released me to work.

We discussed that I am still having the visual issues with my right eye and how the issues I am having are not consistent with the brain tumor...so he wants me to get an MRI ASAP and then see him 2 days later for the results. So far as the visual field test, he feels I should hold off on that until after we've had the next MRI because there may be something else going on with my visual cortex and we may be able to see it now that the tumor is out of the way...(BTW: my visual field test results are not consistent with the pigmentation dispersion syndrome either -- well not ALL of the symptoms I am having)...

He asked about my teeth...I said they are either numb or hurt...he says "I promise that will improve"...that's fine...the roof of my mouth is still swollen too and again he says "it will improve". That's fine...I have to stay on the prednisone until further notice...

He says I have bounced back and am doing amazing but he can tell I've overdone it. I told him I am just now realizing how important it is to stick to the restrictions...bending still hurts and feels like my brain is gonna fall out my nostril...he says "that's normal" continue to take it easy and listen to your body...Which I will do!

Even though Tricia picked up my prescription for percocet on Thursday, he went ahead and gave me a new written one yesterday for when I need it. I told him that I have been taking 2 at a time but have been able to increase from every 4 hours to every 5-6 hours. He's says "that's excellent"....

When we talked about the earaches and headaches he said he'd heard of patients complaining about the headaches, but never an earache from the saline...I told him I don't know for sure that is what is causing the ear pain but it feels like water being trapped in my ear so I am assuming it's from the saline...he thinks maybe the MRI will give us an idea of what is going on there...He said if the saline is giving me instant headaches to just stop using it...although at this point I am finally getting some relief of being able to breathe through my nose using the saline...he said it's up to me if I want to deal with the headaches or the breathing...

I got some pictures while I was at the doctor yesterday with my camera phone...we were having so much fun (just Andrew and I!)...However, he has my phone so I have to wait til he gets home and then I'll post the pics here (or maybe my other blog?)...

So that's my update...

Post Operative Appointment today at 3:45

I don't think the doctor will lift any of my restrictions, I have a feeling he will leave them the same. I am hoping he at least returns me to work part time (10 hours a week would cover my health insurance premiums).

I've not been on the computer much the last couple of days. Just not feeling well..I can't pin down exactly what it is...my eyes hurt, headaches, earaches, dizziness. I think it's all being caused by doing the saline wash for my sinuses. The saline STILL is not making it through my sinuses (if you've done this, you know what I'm talking about...that wonderful taste in the back of your throat?)...I've been doing it 3 times a day (dr suggests four times)...BUT I think the saline is getting 'stuck' in my ears/sinuses...and it hurts!! So much pressure!

ok, well my computer time is about up...between the exhaustion and the headaches, I just don't sit here long...I'm having more visual issues now too...I'm thinking that may also be related to the pressure in my sinuses...

I'll update later this afternoon or tomorrow about how my post op appointment goes. Wish me luck!

Lab Results are in....Don't know if they are valid...

I really shouldn't be this excited...I mean there are a lot of factors in it...the tests weren't done between 8 and 10AM and they were done on cd10 vs. cd3. I will have to call the dr tomorrow and see if they want to re-run them all since they were supposed to be done early in the morning before all meds (not just the prednisone).

My prolactin and FSH levels are back to normal (that is one thing that the tumor was messing with!)...TSH came back fine, but again I don't know how valid that is since I did the test later in the day after taking medications. My sodium is a little elevated (but still WNL) and my chloride is borderline (but within limits too)...those are two things that are concerning me because these are the things they kept their eye on in the hospital related to the diabetes insipidus.

Anywhow...here's the labs;
TEST My # Normal Limits
TSH 1.039 0.320-5.500 uIU/mL
Free T4 1.00 0.70-1.80 ng/dL
Sodium 145 135-145 mEq/L
Potassium 4.0 3.5-5.0 mEq/L
Chloride 108 98-109 mEq/L
CO2 27 20-31 mmol/L
GLUCOSE, RANDOM 85 60-200 mg/dL
BUN 9 7-23 mg/dL
Creatinine 0.7 0.6-1.1 mg/dL
Calcium 9.3 8.5-10.5 mg/dL
DAY 10 of cycle:
FSH 5.8 (no normal limits, but # should be under 10)
LH 4.6 This would've been just before peak and should
be closer to 20 by now

Prolactin 7.8 (no normal levels, but under 20 is a good number)

The cortisol hasn't been run yet...that's the only test they told me I need to go in early and not have taken my prednisone before this one...we'll see what the doctor says about this...

So I really shouldn't be excited...for those of you who aren't on FB with me though...I have been losing handsful literally of hair the last two days. When I went to the dr on Monday, I learned I gained all the weight I lost back and am looking more 'belly-fat-ish'...the fatigue, the dry skin...I assumed it would be a thyroid issue and was bracing myself for that...BUT my TSH came out fine...but it oculd be because it was run at the wrong time of day with meds in my system...I will just have to wait and see what the doctor actually says...

Falling asleep at the keyboard again...Going to attempt sleeping in bed tonight!! WHOOT!

Feeling "Off"

I never made it here to do the update on what happened at my appointment yesterday....I put the update about Zac's appointment on my other blog....I wonder if I should just start combining the two blogs now? I don't think this one will go forever...Maybe I'll wait until I feel like recovery is actually accomplished or I get answers otherwise?

I went to the doctor thinking I had cellulitis again..it started the exact same way and in some of the same places. I get there and they actually, for a change get me in right away..(of course, because I had also checked into the lab for my bloodwork for the endo)...I found that I've put all the weight back on...and I'm beginning to notice hair loss so now of course I am overthinking that I may have a thyroid problem...I'm sure it's all in my head...but we'll find out soon enough I suppose....

Back to it...My appointment...The PA comes in...of course I my PCP insisted I HAD to come in on Monday and of course, once again she did not have anything open for me to see her personally...this is the 5th appointment I've had at her insistence that I've not been able to get in to see her...The PA looks it over and says "do you live alone"? I don't understand why this question is important at ALL?! She explained that she was wondering if I lived with anyone because it could rule out if this rash was contagious...No, I don't live alone...I have five children and a husband and no, no one else has a rash...so that rules that out...she decides that I have 'dermatitis' and 'foliculicitis' (sp? - ingrown hairs?!)....Ok, well she already knew I had psorasis so I'm not sure where the dermatitis is a necessary diagnosis in thsi case...whatever...she gives me a script for an antibiotic and a topical ointment cream and suggests I take Claritin for the itching...I asked her about that though because the neurosurgeon's told me not to take anything until after my post op appointment on Friday. She knew nothing about it and said she felt it would be just fine, but if I'm not sure if he would allow it, to call him and ask before I actually take it. *sigh* I get to the pharmacy and they asked if I wanted to refill my Percocet...sure I say...he says OK, I need the written script...It's in the comptuer but I can't fill it without the paper slip...which I don't have yet. I talked to the neurosurgeon's office though and they are sending it by interoffice mail to the Lakewood Pharmacy so that I don't have to drive all the way downtown to get the written slip. It should be there tomorrow. I've cut back on the percocet...I still have 3 or 4 pills left..which isn't too bad. I've been able to stretch my time between doses to 5 to 6 hours, but I found that if I take only 1 at a time then it lasts maybe 2-3 hours.

As I said, I have been feeling "off" for a couple of days. It seems my vision is getting worse, especially in my right eye this week. I can't help but wonder if it's from the swelling or if it's not even related to the brain surgery? I have to get my visual field test redone, the opthomologist suggested getting it done in January after surgery...I will ask the neurosurgeon on Friday if I should wait or not. I know with pigmentation dispersion syndrome (which is a secondary diagnosis at this point as to my vision loss) it is treatable with eye drops and other medications if it's caught early enough...well with the waiting after the neurosurgery it may turn into "not" early enough...I need to wait til I have more medical leave saved up before I can afford to undergo another surgery! Especially eye surgery...

I was looking forward to getting my ability to drive back on Friday when I go to the dr...but I don't think I'll be comfortable with driving with the problems I've been having with my eyes...BUT it is putting an incredible amount of strain on Andrew having to try to keep up with my schedule and his AND all the driving...

Looking forward to my appointment Friday anyhow...hoping I can get some copies of the MRI or the video of the actual surgery...I'm not sure if Kaiser will release that kind of stuff, but I'm hoping I can get my hands on something....

Got to go.

Update...some news here, some over there...

news from our house: Zac is being clingy and not feeling well. I don't think that I've mentioned that I think that I think Zac has pinkeye.... He just seems to be more and more miserable and doesn't want to take a nap...Of course, I still can't pick him up and it's hard to snuggle with him because I can't bend my head down without it feeling like my brain is gonna fall out my nose or eye sockets. I was stressing over trying to get him to the doctor first thing in the morning and then realized...DUH we have two vehicles...and Kelly can drive....so I can have Andrew take the big van and Kelly can drive us to the doctor when I get through to them and get the appointment made! WHOOT....

Somehow I have to arrange to get Harley to his behavior therapist tommorrow too...I am not ready to get back into routine, I'm kind of enjoying the "time off" from trying to get everything arranged and oganized...

So I guess I shouldn't send Tyler to school on Tuesday -- don't want to chance exposing anyone...But what about Harley? Do I keep him home too? Or do I call his behavior therapist and leave the decision up to him? And do you think it would be safe to send Harley to school on Wednesday if we can get Zac started on treatment tomorrow.

I finally taught Harley how to do laundry, all I have to do is tell him, in step by step directions on how to do it..so it's almost like having a voice activated laundry system LOL

Ooooh! Only 6 more days!!

Till I go for my post-op appointment! I am determined to make my percoets last that long...been trying to take just one or stretch the time between them. I really want to be able to drive here really soon! This not driving is gonna send me to the looney bin!

I don't know if I mentioned that I spent New Years Eve sleeping and vomiting--thanks to what I think was a 24 hour stomach flu? That really put me on a set back...my nasal cavity has been super sore (I think it's from the pressure caused by hanging my head and vomiting at the same time!)...I just don't feel the same...and my eyes have been giving me more problems too...and OMG the pressure in my head....and the dizziness!

Well I've not been back (nor taking cute pictures of my kids!) because now Zachary has it...it was a long night of sitting on the floor tickling him...and tracking Harley...even though the fridge was locked he wanted to get into the food! He knows around Christmastime there's always extra foods in the house....

I hope he is the last to have it...Of course, it has meant a lot of up and down the stairs to get laundry going (Harley won't carry it if it smells like vomit)...but I can get him to load and unload from/to the washer so that's a really big help!

Anyways, wasn't sure if anyone was checking in here to see how I was doing...and that's my update.

I got some gorgeous flowers from Leher's today...Thought they were from my dad but they were from my employer (Pasco...the greatest employer in the world..or at least for parents and caregivers in our situation!!)...I will have to get a picture later...

Andrew took Tyler, Kelly, Robert and Robert's friend Adrian to Target, the grocery store and Best Buy...they have gift cards for all of the above places and I need some stuff from the grocery store...I gave the kids my list: a new digital camera (since both of my suck big time!) or the Wii Fit Plus....we'll see if they come home with anything for me :D

Ok, well Harley's on the prowl for food, so I better get the fridge locked up. I think I have everything else locked up already except for dried noodles and if he's gonna eat those...well...And Zachary's still asleep so maybe I will lay down for a while?

Wish Upon a Hero - I wish for members for the various states of our group to help others in their local community.

Wish Upon a Hero - I wish for members for the various states of our group to help others in their local community.