The Road Before & After Surgery

V-T-B-Vitamin, Tanning, Birthday Blog...

Thu, 23 May 2013 03:02:19 -0500

11 hours of sleep and this gal is STILL tired!

I am now up to taking 11 pills including vitamins of all sorts on a daily basis. I have to put up reminder notes on the kitchen cabinet just so I don't forget anything. Yes, NUTS! I am still using my 'Nutribullet' machine so I am getting plenty of fruits and vegetables via liquid form. Why am I still fighting the impossible? I assume because I still have a ton of FIGHT still left in me although once again this week I have had my moments of doubt. The feeling of just "giving up" because this battle is certainly a TOUGH one! Amen.

Last week one of my specialists expressed concern that maybe I am not getting enough light. Sunlight-heck, any light at this point! So...this afternoon Eric surprised me with a 2 month membership to our local tanning salon. Hmmmm?.... I would usually be excited about going to the tanning salon and getting some R&R time in the tanning bed however I am growing a bit frustrated with finding some energy. Any energy! They say even tanning bed bulbs-light can provide Vitamin D for the body in low doses-10 minute sessions. At this point I said, "Oh, what the heck!" I will have to bring a dark kitchen towel from home to protect my eyes since I sure don't need to aggravate my seizures but at least I won't be looking like 'Casper the Friendly Spring ghost' anymore. Hahahahaha! Most would say with cancer and other serious medical conditions, "Why in the world would anyone step into or lay down on a tanning bed?" Here's my input: If you are at the point where there are no further medical options and your specialists are just utilizing temporary band-aids then by all means, "WHY NOT?"

<As it reads on the tombstone:

She passed after a long medical battle...However..."BY GOLLY! SHE PASSED TAN & HAPPY!"

Hahahahaha! Yes, I can laugh at myself because sometimes I even find my journey a hard-to-believe-on. I assume others in my shoes will also find a few chuckles out of that one! Heeheeheehee...

Guess who's birthday is today? LITTLEBLUE! My, how the big dinosaur has grown over the years and at 5 years old she is now topping the scales at over 55 pounds. Pretty large for such a small puppy! HA!! Of course we celebrated her day with the rest of the fur gang via floor style, just for Oreo so he could also share her birthday treats. Also, so he could once again show his pearly whites to the curious kitty gang, hahahahaha! He might not be able to walk again just yet but Oreo still has a ton of spunk! We can't believe Littleblue can still fit into her birthday 'PAWTY' shirt from when she was over a year old. OK, maybe it didn't fit quite so much like a shirt, more like a tank top now. After taking some photos Eric said, "They look so happy!" Littleblue had a great day and a few walks across the street at the local park to boot! This evening? ZZZZZZ.....

Here's crossing our fingers for a much cooler and drier upcoming Memorial day weekend! Possibly a short notice trip out west pending on if a friend of mine is coming into town and can watch the fur gang. We have a list of potential homes to look at and this gal is willing to test the travel waters via-plane! I told Eric, "When it comes time to move its going to be short and sweet. Here today and POOF! gone tomorrow!" Call it the, "Stress Protection Program." Similar to the "Witness Protection Program" but the only difference is, I am going into hiding to protect myself from stress. Hahahahaha!

A Lesson About True Family For Those Facing Serious Illness.

Tue, 21 May 2013 22:59:00 -0500

"True support walks in when everyone else walks out."

I read that recently and the simple power of that saying brought me to tears. I have learned that lesson since my child's diagnosis of cancer.

Anyone who has faced a serious illness as a patient knows that you quickly learn what a true family support system really means. They are the ones who should first be there and who are present for you in any way you need them. Some people you love will disappoint and not rise to the occasion, and some people you never expected will be your biggest supporters, strangers.

It is hard not to resent families who are there in the crisis, and then leave once the immediate crisis is over. There are families who are not there for the long haul, for the good and the bad that a disease may bring. The initial drama draws everyone in, but sends them running afterward.

I have learned, especially when you are living a nightmare, that it takes a strong family to stay with you throughout the crisis. A family who keeps checking in and knows the journey is not necessarily over once you are in remission.

Some families are not capable of handling illness nor have the emotional capacity to handle a crisis of another. Some just feel its too much of a burden, then walk away. This knowledge does not make it any easier for us, the patient, as we wade through the process of dealing with disease. I see regularly the comments of patients and caregivers who talk about families lost since diagnosis. Some are surprised and profoundly saddened by the lack of support from those expected to help the most. However, many happily note those friends and even strangers who surprise them with support in a time of great need.

If you’re a patient or caregiver, craft a strong support network–both in person and online. If you have a chance to do so, be the kind of true support people are often searching for in their lives when they need it the most.

DZL M.D.

Starting The Week On A Drano Note...

Tue, 21 May 2013 03:43:38 -0500

Here we go...Another dreaded day of treatment and another cycle of migraines that I 'thought' were gone after taking the new migraine medication. Since I can't do Drano and strong migraine medication at the same time, the ole head games have once again reared their ugly heads. Add an unexpected seizure, no auras-pre warnings and you have the makings of a bad start to the week.

UGGGG!

Eric has three more days to finish up duties at the Armory however has completed his monthly drills. They are hoping to have him finish up his last three days over the next few weeks since his contract is officially up June 14th. Its like closing one life door and opening another.

Bear kitty is back to acting more like his old self before cancer. He will be receiving his third round of chemo meds later this week with only one more to go. Bear has even started eating solid food again! No more canned food and hiding in the kitchen anymore. He is much more social now which means he is feeling a million times better! Oreo continues to slowly recover from his stroke/seizures. He is now doing longer laps in his wheelchair when encouraging him to walk using treats. Its been far less stress on all of us because its hard seeing human life in any form struggling with illness. I don't know how anyone can just sit back, watch and not do everything in their power to help those in need. Well...I guess I can. We both can. We have been on that receiving end.

My thoughts and prayers go out to fellow GP'ers who were affected by the devastating tornadoes in Oklahoma as well their family, friends and loved ones. It seems one would think the government would declare tornado alley-midwest areas as a place unsafe to live. If they isolated and banned the areas as unfit for anyone to live then maybe lifes would be saved. It seems the most deadliest storms always occur in this section of the United States. Why allow anyone to live in a place that will always be considered high risk? Amen.

*Many thanks to those who always keep us updated on various Gastroparesis research/information. I always felt that when people choose to feed their infants solid food too early in life that it will lead to future GI problems. Now there appears to be data that proves the theory to be true! I know of a few individuals who started their children under the age of 1 on solid foods, adult foods when they should had continued using baby food/formula for various stages of life. The result of feeding infants under the age of 1 a diet consisting of adult-solid foods that GI organs which are still developing can't handle? Severe food allergies, constipation/dysmotility issues and GI development problems. Sometimes I regret not speaking up when watching toddlers/young children being fed adult foods and now seeing the consequences come to life. I would never wish Gastroparesis on anyone, nor especially a child because GP is for life.

Support For My Illness, Friend Support Comes Hard...

Mon, 20 May 2013 03:39:35 -0500

I first got sick when I was 13/14... I don't really know because I didn't grow up in a home that allowed me to be sick. I just remember that's when the rashes started and not being able to pull stiff fingers out of my pockets. By the time I was 18, my knee was collapsing, I had scarring rashes, and fatigue that laid me out for a month. 19... pneumonia, pleurisy, and extreme fatigue... etc, etc, etc...

I'm 29, now, and have had a hard fight to find people who want to accept and understand. One thing that triggers me terribly is to have someone say something like, "you are always sick" or "you are always tired"... I just want to kick them in the arse. My sister is one of those people... and new friends always are those people.

I get why my sister can't accept it... our parents are disabled and they were always sick with either physical or psychological illness growing up. It still hurts but I don't press her to accept it and generally don't bother her with the various icky parts of being sick.

New people are hard to handle. Those I consider close friends, I usually try and explain the situation... almost everyone has been so kind and responsive and made me feel validated and encouraged. One, last year, she made some snarky comments and it is still bothering me. I considered her a great friend, confided in her, spent lots of time with her, and found out she was talking about it with my roommate w/nothing short of immature gossip-status. I skipped her wedding and have a hard time seeing her now... a year later.

I guess this is long, I'm just trying to reconnect with the reality of my life and I'm using this as a way to articulate all the things I've buried over the last few months.

I am 29, I have 2 autoimmune diseases and 4 additional chronic illnesses. I consider myself in GREAT health all things considered though I do have some acute flare up stuff going on in this moment. I feel like I have the flu at least 300 days of the year and probably 30 days of the year, I feel like I've been stomped by a dinosaur, eaten by a teryadactyl and then pooped out, stomped, buried 10 billion years, and burned as fossil fuel. Those are rough 30 days...

Thanks for letting me vent.

-SngleSckGrl

Bidding A Bittersweet Farewell...

Sun, 19 May 2013 05:27:03 -0500

If yesterdays specialist visit was informative then today's emails and texts from concerned parties was the informative icing on the cake ! Call it the ole game of a well predicted hand. Thank you to the dealers who let us know what's going on when we have absolutely no idea what is going on.

On a different hand...

Eric had a few meetings today while at the Armory with his superiors regarding re-enlistment options. Of course this may sound WONDERFUL to the average healthy person or even to someone who is sick but has an abundance of family support. For us, this meant an hour long debate that ended with the most obvious decision. Sadly there is just no human way possible can we attempt any type of re-enlistment that would had put Eric only 5 years away from full Army retirement benefits. Why? Its clear. We have ZERO support. ZERO physical support. Trust me, Eric is even starting to become exhausted keeping up with working, chores, normal every day life then adding to the mix the over whelming things that come along with being chronic/terminally sick. Its IMPOSSIBLE for us to find a way, any way to make things work so he could continue another 5 years in the Army.

Bidding a bittersweet farewell...

Eric had to do the job once again explaining to Supervisors the unique situation called, "Our life" and how we live without support. Physical support.The reactions once again he said from concerned parties was, "PRICELESS!" No one gets it, not a normal person in this world with any sort of heart or common sense will ever get it. No one has really got it nor understands it but clearly we have no support. There is no physical support and its hard enough juggling life as we speak. Adding a re-enlistment just isn't in our cards. After a long afternoon and an hour trying to rack our brains coming up with ideas we sadly came to the realization. After 15 years it is time to part ways with the Army.

Life can be really disappointing but 'really' disappointing when others around you are a complete disappointment. Hey, we tried. We REALLY tried but it just isn't feasible. Not in this lifetime.

So... After a very depressing afternoon for both of us, <Me-Facts once again realizing just how much my illness is effecting more than I would like to say in this thing called life. Seeing first hand let downs from those whom we should had been able to always rely on. <Eric-The same.

This evening at least I was able to bring a few chuckles and a huge smile on his face by giving him a few early Army retirement gifts. Of course these are a few "inside" jokes, but it was just what he needed. I think we both needed, although minus for me the pizza and liquor. Hahahahaha!

Bidding a bittersweet farewell to 15 years in the Army surely isn't easy. I assume if we both had that wonderful thing called, "Support" it wouldn't be so hard, very disappointing and extremely depressing, but in the end we will always have each other. Amen.

Continuing To Make Sense Of Things!

Sun, 19 May 2013 04:38:32 -0500

Rain, rain, rain, rain...

Looks like its going to be another three days of on & off rain... S I G H... Sure makes for a good time just to curl up on the couch with the fur gang. Eric has his last weekend at the Armory since his contract is up early June. It will be 15 years total that he has been an active member in the Army. This of course on top of his full time job at the Sheriff's department. Since he only had another 5 years before being eligible for retirement benefits its going to be a sad departing. I assume if (and a BIG IF because we don't) we had support from either side things would be different because then he could had easily finished out the next five years. They are even willing to make sure he isn't deployed due to medical reasons-helping me here at home and with treatments, etc, etc, etc. I already warned him that they will probably figure out a way to keep him in the Army for another five years but to be careful seeing we don't have any help from either side and if he did sign up for the last 5 years it will call for me asking friends to step up to the plate. They have already stepped up more than they should have and continuing doing so in and out of state.

What a weekend!

I had a follow up appointment with my specialist today in which it turned out to be a very good visit. Informative visit! Since they now have all my medical records since birth we can finally make sense of things that otherwise were mysteries to be solved. A few days ago I started having the ole strange bruising again. I was aware of some bruises on my legs and side of my stomach but what I couldn't see were the ones under my arm and on my back. Now since we have prior reports its easy for my specialists to resolve issues due to flair ups that didn't just start after my GP diagnosis but were there for most of my life. The odd bruising, rashes and blood issues aren't so odd anymore, its actually an auto immune condition that shows a history of flair ups which are to be expected. For now it looks like lots of rest on Saturday then back to the ole Drano aka Hell-In-A-Jug treatment for Sunday and Monday.

With it being a dreary, rainy and wet weekend you can at least say I won't be missing out on much. For the most part the strong migraine medication helped kicked this last cycle out so my head will be ready for the next two days of treatment. THANK GOODNESS!

At least we were able to head out this evening for a bit. I needed some time to clear my brain. We both did because there has been so much going on that sometimes you just need a break. Amen.

WOOHOO! For NEW Migraine Med!

Fri, 17 May 2013 00:29:32 -0500

THANK THE HEAD GODS! THERE IS A MIGRAINE MEDICATION THAT WORKS!!

Yep, I finally caught up on allllllllllllll my sleep, actually make that I slept 10+ hours today. Once I finally woke up from my new migraine medication coma it was already 4:30pm.

YIKES! Talking about the day just flying on by! Hahahahaha!

The down side of this new medication is I have to postpone Drano aka Hell-In-A-Jug until Saturday seeing you can't mix both. The other down side is this means another few days of all clear fluids-chicken broth, ice pops, fudge ice pops, sports drinks, etc. No worries seeing "Been THERE, Done THAT!" Actually, so many times I have lost track through out the years. Hopefully with breaking the four day migraine cycle it will also ease up the frequency of my seizures and any seizure auras.

It rained once again last night into the early morning hours which makes for one humid, buggy, wet day. At least it was a bit cooler than yesterday so we were able to finish planting the rest of the wildflower and sunflower seeds. By now my neighbors should be used to the "Masked Gal!" BOO! Same with walking the fur gang, masks, masks and more masks. The only time I don't wear masks is when indoors. Hey, only 4 more months of masks to go. GEES!

With being on fluids one certainly does get tired of the same ole, same ole so this evening since still needing lots of moving around we headed up to 'Jungle Jim's.' For those who never heard of 'Jungle Jim's' I suggest taking a look online. If you like a variety that is out of the norm I highly suggest visiting when in town. For me it offers plenty of alternatives when it comes to liquid dieting. They have a huge selection of Amish made goods that come in solid & liquid form. BONUS! for me finding a few new things to try; "Pumpkin, cinnamon, nut soup" and "Potato soup mix-via liquid." I can't wait until after this weekends treatment to try both.

<For my friend Kev who can't stand this guy:

GINGHAM STYLE!

Hahahahahaha!! And who says migraine meds can't make you happy? Slap happy!!

Things That Make Me Happy :)

Thu, 16 May 2013 03:12:09 -0500

While visiting with my Grandmother last weekend I ran unexpectedly into a dear friend whom I have known most of my life. When asked later that day via text, "What do you do for fun?" I honestly had to stop and think for a minute.

GREAT QUESTION!

What DO I do for FUN? What's fun anymore to me isn't necessarily fun to the normal, average person. Fun to me is not having to visit any 12 of my specialists in a given week. Fun to me is not having to see the emergency room for an entire month. Fun isn't what fun used to be before Gastroparesis, before really, really getting sick when things that have been progressing most of my life turned for the worst. Do I consider myself a FUN person regardless of medical limitations? Why sure I do! On a good day I like to get out and enjoy life just as much as the next person but I have restrictions. Its called, "My life."

Fun sure doesn't mean this hellish nightmare jug. A fellow GP'er friend is having a colonoscopy and endoscope procedure later this week. I asked her if they use the ole Drano aka Hell-In-A-Jug anymore? She replied, "No, they actually use a medication that comes in just two small bottles." Seems no one hardly uses this ocean salt water toxic crap anymore. Only if you are having certain types of surgeries or your insides are shut down/paralyzed. Maybe this means a smaller Drano for this gal in the future? One can only hope...

Before the wicked strikes again I decided that although maybe I can't tell you how many things I do that are "fun" anymore but I can tell you what makes me happy. Not happy from years ago but happy now.

*The smell of fresh, hot cinnamon rolls at the local mall.

*Lucky kitty smiling-from the side view. Sometimes you can see her smile. :)

*Positive progress with Bear kitty & Oreo's medical journeys.

*A warm bubble bath with lots of candles.

*A foot massage! A H H H H...

*My huge heating pad in the evening time while watching television.

*A fresh box of Puffs Kleenex with Vicks! (There's that product plug again!)

*Big fluffy socks.

*Watching wildlife with their babies playing in the backyard sun.

*Colorful fall leaves.

*Victoria Secrets lip-glosses.

*People who know sign language and sign back when least expected.

*Historic stain glass windows inside an old church.

*Sirius radio-20's swing and the spa channel to unwind from a long day.

*Getting all my blood work the first time around and not missing a vial.

*When at home sick or at the hospital, waking up to see Eric next to me, not saying a word but just letting me know he is there.

*A GOOD appointment with my specialist.

*Unexpected hugs from my specialists and good ole fashion advice that comes from the heart. :)

*The first and last snowfall of the season.

*CHOCOLATE!

*A sincere apology.

*Support.

*The kindness of strangers.

And last but not least

*Having the chance to start life over on a fresh, clean slate!

A Day FULL Of Surprises!

Wed, 15 May 2013 05:52:07 -0500

Don't you just love surprises? I am not talking about the scary or the medical HOUDINI kind either. More like the kind that pleasantly surprises you! The good kind.

It was a day full of surprises!

The first surprise was realizing the new migraine medication although didn't kill the migraine, did allow for some much needed sleep. A H H H H...

The second surprise of the day was finding out Eric got a phone call this afternoon from the salon that did my not so good Crayola Crayon explosion of highlights on my hair. The manager decided to refund the day at the salon and even offered to have me come back all expenses paid for a full pamper treatment. Although I really appreciated both, I have to say I will keep my hair safe with my hair rescuer friend from here on out. Heeheeheehee...

The third surprise of the day was realizing some hair extensions pull on your scalp a bit harder than others so my friend Annette was able to pull some hair surprises of her own! By later this week I will have a hair surprise coming from Australia. WHOAHOA!

The fourth surprise was realizing that the new pair of hair clippers I actually bought to shave my own hair actually worked GREAT on Eric's hair! Now I am guaranteed to know that there are no worries when the sheers meet my scalp the next time around and Eric even got a great hair cut. BONUS!

The fifth surprise was receiving a package via UPS this afternoon and finding another Ovilus III then already having a buyer for the first one so a WIN-WIN!

The sixth surprise was taking the initial Ovilus III outside, placing it on the porch, forgetting about it while getting Oreo back inside and situated then going back outside to get it then reading the word: RABBIT. Mere coincidence seeing we have a family of bunnies in the front yard? Hmmmm... You decide on that one! We plead the fifth.

And the last of a day full of surprises...

Surprise seven, finding a huge bag of Hershey's plain candy bars, Coke Cola and another migraine.

HEY! Who says half of a seventh still can't be a good surprise? Heeheeheehee...

Missing Winter-ALREADY!

Wed, 15 May 2013 05:16:21 -0500

I sure do miss winter and the nice cold weather! Last night we are wearing sweatshirts. Today we find ourselves reaching for a short sleeve shirt. All the monsoon rain has left the great outdoors looking more like the great rain forest! Forget the bugs being super sized because clearly all the honeysuckle trees and various plants, not to forget-weeds are also on steroids this year. RAIN STEROIDS! Hahahahaha!

Allergies? This isn't the city to be residing in when you are sick and have a compromised immune system by any means. Migraine? Rotating from one side of my head to the other. Treatment? HA! FORGET IT! The first glass of Drano aka Hell-In-A-Jug already gives you one wicked salty chloride headache from hell so for me to add an already existing migraine to the mix would just be flat out, dumb! The last thing I need is another emergency room visit due to my sheer ignorance. My gut is screaming, "NO WAY! MR. DRANO!" not today. This spring and summer season is looking more like a really bad Halloween movie coming to life. Masks? Yep, wearing them. TWO. One mask isn't enough with this weather and allergy season because I am still finding myself sneezing and looking more like a huge swollen teddy bear face every day. This year will be double masks when going outside-double protection since allergens are still able to get in through the sides of one mask. Eric is also finding himself doing a bit worse this year with his allergies. Instead of just using a prescription nasal spray he now added allergy pills to the mix. My steroid nasal spray is just barely getting me though the day. I now have found a love for Puffs Kleenex with Vicks. Ahhhh...it sure does provide a bit of relief! (Yes, that was another purchase worthy product plug)

Today we finally were able to pull up our out of pocket copay for my recent outpatient procedure and biopsies online. Honestly I really thought it would be paid in full but of course that would be too generous for any insurance company so instead will be responsible for anywhere between $189.00-$250.00 per every three months. Remember, since there are no other treatments or surgical options the only thing that they feel is safe enough for my already tired body are the nightmare outpatient procedures to help possible rid abnormal cells from taking off like wildfire. This is done every three months. Now it has us questioning the experimental injections that I am to see the surgeon/specialist for next month. If insurance doesn't cover any of those due to them being considered 'experimental' then they might not happen. We will already be looking at the outpatient copay procedure costs every three months not including normal follow up care and symptom management for my unique medical condition.

S I G H...

It's no wonder people almost lose their minds when faced with a chronic/terminal condition. Its exhausting mentally, physically and also to your wallet. Amen. For now instead of jumping the gun we are just taking things one day and one step at a time. Needless to say this last months rude awakenings of scary reality left me leaving two specialist's offices as a completely different person. I think when you go through really traumatic medical experiences it really changes your way of thinking. It changes you as a person. You become more aware. I have my moments. I also have my good and bad days, as expected. Deep achy pains through out my body are the absolute worst but I have come to realize its just another part of the overall battle. You learn to find ways to adapt and overcome. It doesn't happen over night but in time...it happens.

With being sick I know just how much one has to constantly mix things up in life. Poor Oreo has been getting really depressed not being able to play outside in the backyard and do the things he once loved. Today we decided to start putting his huge floor bed next to the front door. Guess what? He LOVES IT! Eric says he barks all day at everyone walking at the park across the street and enjoys talking at the wildlife outside again. Heeheeheehee... We also started putting his wheelchair in the backyard while Littleblue is outside. He even tried moving his back legs again this evening which is a great sign! By later in the evening they are both worn out so we put an extra towel down for Littleblue by the door. Now they guard the front door together.

More rain is heading our way and looks like it will be four days in a row. OH JOY! The way this is looking I might have to deal with migraines and Drano headaches together. Its going to be a double whammy week. I just feel it! S I G H...