The Road Before & After Surgery

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...

HAPPY MOTHER'S DAY!

Mon, 13 May 2013 05:35:42 -0500

HAPPY MOTHER'S-FUR MOM'S DAY!

What a great way to wake up on Mother's day! COOL, CRISP, FALL-LIKE, SWEATSHIRT wearing weather! MY kind of weather! Heck with heat, humidity and all the allergens in the air.

We had a very nice time last night and although I wasn't too keen on going out it did do me a bit of good. Its always great to escape reality-life a bit and help clear the mind. Thank you Hun for taking this gal out for a night on the town and it was great to also run into a few cheer Mom friends whom I haven't seen in quite sometime. I will have to take you all up on the Starbucks social offer on one of my 'good' days. I don't get out much so when I do and run into those who haven't seen me in quite sometime there can be a lot to catch up on!

Since we have been celebrating Mother's day a bit early this year and I got my gifts of pampering through out the week we decided to make this a more relaxing day... Once we woke up and attended to normal house chores we headed to a very old historic cemetery down the street. I went there years ago but didn't have much time to really appreciate how peaceful and beautiful the cemetery was and all the amazing history behind it! We couldn't believe just how many families were affected back in the day by Tuberculosis. It was very sad to literally see entire families succumb to such a horrible disease. Back in the early 1800's they actually hand engraved tombstones. Some you could still read while others clearly showed time wasn't too kind to the etched markings. One particular stone was of a girl named, "Anne" who had an American Sign Language symbol and a beautiful poem inscription about Heaven. Anne only lived to be 23 years old, just far too young isn't it?.. History was never my favorite subject in school but over the years I have actually grown quite fond of it.

Yesterday I attempted to bake a few Mother's day gifts but instead of strawberry cake it ended up more to be a strawberry crumb mess. Hahahahaha! It might had been a good thing we dropped off gifts late last night before heading out seeing cool weather, bad allergies and a wicked migraine always equals a bad head day. It also equals unexpected seizures. While at Kroger's picking up a few things I found myself feeling a bit "off." I can't really describe seizure auras other than saying it feels like small electric shocks going off in your entire body, your thought process becomes paralyzed and waves of horrific nausea start taking over. Eric is now a pro at detecting my pre-seizure auras but still there is nothing worse than having a seizure while out in public. EMBARRASSING! That's my word to describe it. So... after we made a quick drive home, then three rounds of vomiting and a cluster of migraines from hell I finally put my white flag up and we went to get my head some help. I didn't realize just how bad my allergies have gotten and this year is no exception to the rule. It also doesn't help someone like myself with generalized seizures. Anything that can aggravate the head will also aggravate the brain. That means more seizures. I was told its time to wear masks when outdoors because clearly my immune system response to allergens is anything from normal. Stress? Once again we were told keep it to a bare minimum because panic attacks are also an easy way to set myself up for an easy seizure. YIKES!!

Since it was Mother's day the local ER wasn't that busy so thankfully we got in and out rather quickly. I got some IV med relief, prescriptions to take home and was told to take it easy for the next few days. Drano aka Hell-In-A-Jug treatment is scheduled for tomorrow but for now they want me to take things one day at a time. We will wait and see how I feel tomorrow.

While I took the rest of the day relaxing, icing my head and taking it easy Eric was able to play catch up on grass cutting and landscaping. We still have half of the original mulch shipment left but are confident things will be done by tomorrow. Since we didn't get home till later this evening he only had around 2 hours left of sunlight. It was enough however to cut the grass and weed eat. Hopefully the forecast will stick this time and we will have a week to dry out.

Here's to a better head day tomorrow and keeping treatments on track. FOR ONCE!

Time For A Break!

Mon, 13 May 2013 05:37:13 -0500

Another reason for a great Mother's day weekend:

Eric has a three day break he said from babysitting all sorts of criminals at the jail-thieves, violent offenders, drug addicts, non-child support payers, etc . WHOAHOA!!

Thankfully the garage flood from the monsoon rain has drained pretty much out minus a few rain puddles so he was able to clean things back up. This also means I can give my poor body a break from having to pick up Mr. 38 pound Oreo, helping to assist him outside. For me, that's the hardest part with his back legs being paralyzed. Oreo is getting much, much better now when it comes to walking in his canine wheelchair. We use his favorite bacon bites then have him come get his treat while walking in his wheelchair. It was a bit tough for him at first but now he can move really fast before Littleblue gets his treat. We can't wait to hear how much better he is doing at his next Veterinarian specialist appointment.

Speaking of Littleblue...

Miss. Littleblue isn't on the honor system yet in the front yard due to a few prior escapes without a leash. Since we have to lift Oreo to take him outside Littleblue has been doing good not trying to perform the great escape. That was until today. For some not too bright reason I had the door open a bit too long when Eric was bringing Oreo inside the house. Next thing we see is Littleblue bolting as fast as her legs could go heading right to the park across the street. AHHHHHH! We both FREAKED OUT!! I know how tough it is chasing her and trust me, she can go, go, go! Thankfully her favorite place is the backyard and once I started running to the backyard gate Littleblue did a quick turn around and headed with me. WHOA!! Talking about a very close call! Now Littleblue is on leash time-out when we take Oreo outside. NO WAY do we want to risk that great escape from happening again. One thing is for certain, Littleblue got her laps around in the backyard mud. GEES!

This afternoon I went for some hair repair at my friend Annette's home. I didn't realize the hair color I placed on top of the "TOO LIGHT" highlights were already starting to fade through after taking a shower last night. DANG IT! Not to worry though, my hair rescuer was able to put some toner on the highlights and seal the second round of hair color. Although I am still ready to just be gone with my hair she did a really good job on my locks and I feel a lot more like my old self again. THANK YOU my hair rescuer!

Since Eric has a three day weekend we decided to head out for the evening. This was after being asked four times because honestly I just didn't feel like going out. I am tired and was hoping to just relax for the evening. After I got dressed and was ready to head out the door a dozen roses were waiting for me. VERY SWEET, LOVE THEM! What a great Mother's day weekend, thank you to my Hun, fur gang and Son, little E. Xoxoxoxoxoxo