Surgery Summary (almost 2 months post-op)

I feel AWESOME, seriously. So here is the run down of what has happened for anyone who is curious enough to read this

• Oct. 26th: Ultrasound & Dr appointment @ APW, diagnosis: Endometrial polyp, cysts on uterine wall. Dr. Tandon was sweet, direct and to the point, qualities I value in a doctor. (gimme the facts, but with tact) I really think she must have thought I was a little crazy, because of how calm I was about everything.  Dr T: "we found polyps and cysts in your uterus and endometrium, you need to have surgery to remove them, a hysteroscopy, D&C and polypectomy." Me:"okay" Dr. T: "Do you want to schedule that today?" Me: "yes."
• Nov. 16th: pre-op/ pre-admission appointments: boring, long, necessary. 
• Nov. 25th: The BIG day
• We stayed up late to eat and drink, so I wouldn't be hangry the next day. We woke up early, unintentionally.
• Mom, Joseph & I arrive at hospital, and get checked in just before 12:30
• I was hooked with, or up to everything: a gown, a hair net, anti-nausea patch behind my ear, compression socks, pressure cuffs on my legs, another pair of socks, blood pressure cuff, finger pulse ox monitor, some other monitor on my ear, 3 bracelets, and probably about 5 warm blankets on top of me.
• The I.V. hook up didn't go so smoothly...I squirted blood everywhere, blood EVERYWHERE, crime scene quality I'm sure. The nurse thought it would be more difficult and that I would be more dehydrated (fair skin = difficult poke, she said) 
• I was given valium in my I.V. right before they wheeled me to the O.R., then in the O.R. an oxygen mask was brought up to my face, I was told "time to go to sleep", had surgery (so I'm told, happily under general anesthesia I don't remember anything) then I woke up back in my "room" 
• 2, I.V. pain med pushes, a snack, and 1 bathroom trip later I was dressing to go home. We left the hospital, around 3pm
• We all went to walmart for my prescriptions. Joseph rode behind me (in an electric wheelchair) around the store while we waited for the meds. Got home around 4pm
• Mom says she was a little freaked out by how coherent I was right after surgery.  She stayed, warmed up our dinner and ate with us, started my medication notebook (schedule) and left after I was finally settled in and relaxing. (around 6 pm)
• Apparently I am tough one to get to lay down and relax... but Joseph knew the trick, he put a dryer warmed blanket on me and I stayed put. 
• Dec 17th: Post-Op appointment, kind of a waste of an appointment, if you ask me. Dr. T told me it was a successful surgery, everything looks good, made sure I was feeling well and had no complications, then she gave me the all clear to try to get pregnant. 
• Other Facts
• The polyp was benign (yay!) and measured 2.1 cm x 1.4 cm x 0.4 cm, so it was quite large. (Validating for me, I was in real pain and for a real reason)
• This was not my first surgery, but it was my third D&C.
• However,  this was my first D&C that had nothing to do with a pregnancy loss, which made it much easier, emotionally.
• It was so much harder (painful) BEFORE surgery than after. Something I found that people had a hard time understanding.
• Polyp Info: Not much is known about polyps, I know, I asked and I googled... 
• What causes them? Not sure...hormone imbalance seems probable.
• How long was that growing inside me? Who knows...It was kinda flat so it could have been pushed aside during previous ultrasounds.
• Do polyps prevent pregnancy? Unknown, but likely. Symptoms include unexplained infertility and multiple miscarriages. What I do know is that it was there, it was large and it was causing serious problems (PAIN, irregular periods & excessive and irregular bleeding, difficulty getting/staying pregnant)

Now that it's gone & I've healed I feel so great, I have so much more energy, it's kind of ridiculous! I'm a whole new person, or at least it feels that way, especially after months of PAIN. I like to say a HUGE thank you to everyone who checked up on me, left notes and messages on FB, sent sweet texts and thoughtful gifts to me as I endured pain, and underwent surgery. It sure meant a lot, thanks. Goodbye endometrial polyp and uterine cysts and may you NEVER EVER return. 

So, Shaylee needs surgery...(slightly graphic!)

Its been 32 days since the pain first started. I feel like a Star Trek character saying that (you know, "star date..."). 

So,yesterday I had an ultrasound.

It's hard to see, and I can't even tell you what for sure we're looking at. (I grabbed a quick pic of the screen while I was changing) But the ultrasound showed that I have endometrial polyps in my uterus.

 They are causing my pain & other symptoms! It's usually my polycystic ovaries causing problems, but not this time. 

Anyway, it means surgery, a hysteroscopy / D&C to remove them. The following images depict what I'm in for. 

My surgery is scheduled for Nov. 25th. I've had these procedures done before, but not at the same time. Would it be horrible to make a paper chain to count down to surgery?? (It is the day before Thanksgiving) 

I can't wait to have it all done, recover and to FINALLY feel better. The pain is intense and unrelenting, and no medication was adequately helping with pain relief. So it's easy to understand, I haven't really been myself lately. I have a new pain killer that helps tremendously, so that's a blessing. 

Scheduling the surgery was miraculous: somehow the pre-op, pre-registration/admission, surgery & post-op all ended up being scheduled in a way so that I won't have to miss any piano lessons! No make up lessons! Hallelujah!  

Now I just need to be tough for the next 29 days. :)

Untitled

 Life has been busy lately. Well, not so much in the summer, that was hot & boring (in the best way). Now it's back to life as usual: me {Shaylee} working full-time between preschool & piano, and Joseph handling things at home, our sweet home Mecham Manor.
But we've had a complication recently, not Joseph, he's doing great. {we see his neurologist in 3 weeks} it's me. My body and I aren't getting along lately, I'd even go so far as to say that my body hates me. TMI WARNING: if you're a guy, I would stop reading right now. Lots of yucky details coming up. Okay, you've been warned.
In September my period was 11 days late, I thought I was pregnant. I had 2 negative pee tests, and 1 negative blood test before my period finally arrived. And oh boy did it, bad CRAMPS and heavy heavy bleeding for 8 straight days. Then a week before my next period my body was overcome with severe cramps, back aches and pains shooting down into my legs. Tested for a UTI, negative.  Somehow, my period came, and relatively on time {weird though, 3 days spotting and 2 days borderline hemmoraging} it's over now, and I'm still in pain. See, I said my body hates me.
Today marks day 18 of continuos, unrelenting pain. Although now it's like a 5-6/10 on the pain scale, before my period it was a consistent 8/10.
The theory is that I may have endometriosis. Endometriosis is when the lining of the uterus grows outside the uterus. I've done research, and I have most of the symptoms. Endometriosis has never been ruled out, with all the doctors I've seen, and procedures I've have in the past. Unfortunately, endometriosis can only be diagnosed and treated with surgery.
I am currently working on obtaining short term health insurance to help cover my future medical expenses. I'll have health insurance through Obamacare, but it won't start until January, I won't wait that long. My goal is to {possibly} have surgery near the holidays, when I have time off work. Right now it's about pain management, and taking things one day at a time. I'm hoping that if I have surgery that we will have more answers about what has been causing our 9 year long battle with infertility. Is it endometriosis? Do I have  PCOS and endo? I want answers.
President Gordon B. Hinckley said: “If you do your best, it will all work out. Put your trust in God. … The Lord will not forsake us.”
It will all work out, eventually. 

Well I tried...

I tried to donate platelets to the red cross, a while ago, like summertime last year .... it wasn't a good experience, and that's putting it mildly. I've been a blood donor since my early high school years and have done it pretty often, I had no fear of needles. The Red Cross started to call me (over and over)  and even sent me a letter, inviting me to come in and donate platelets, apparently I'm an "ideal candidate" for it.... so I set up an appointment and went.

This was in the bathroom in place of a mirror.

So first came the right arm, it was an okay stick, but it was stinging.. stinging a bit more than I expected. I expressed this to the lady, and she said she'll check it in a bit, then stuck my left arm, perfect stick, no pain. I complained about the pain in my right arm, I asked her to check it, it hurt quite a lot at this point. She said she was sure it was fine but made her way to look at it. After lifting up the gauze pad you could see that everything wasn't okay, there was a large bulge in my arm and immediately she paused the machine and called someone else over... that person removed the needle and tried another spot in my right arm, near my wrist. Which hurt even more that the first stick, and bulged up too, at this point I told them I was done and would like to go. So they unhooked me and bandaged me up, one on the left arm and two on the right, I was trying to be brave, but it hurt and I was the only girl, the men probably thought that I wimped out. I couldn't get out of there fast enough, but they had to write up what happened and why it was an unsuccessful donation attempt. Two blown veins, my first experience with platelets which resulted in my first blown veins. Then they gave me some "gifts" a bag & a t-shirt, I'm pretty sure they were feeling bad by now. 

After getting home mom helped me out by making me an "ice cast" for my arm. I snuggled into the couch with a blanket and watched a movie. 

This is what my arm looked like on day 1: very swollen and starting to bruise.

Day 2

Day 3

 Day 4

Day 5

I didn't take a picture on the worst day, Mom said I was already freaking people out with the whole series of pictures. Eventually the bruise was solid and stretched across my entire arm and up into my bicep.

 I should also mention that the Red Cross continued to call me and urge me to come back and give it a second try, they couldn't talk me into it. A couple of weeks after my arm healed, I went and donated blood, I felt like I had to, or I may chicken out in the future.  It went great, but I was definitely more afraid of the needle than I had been before, the man who poked me was very understanding as I explained why I was scared this time. Sorry if you're grossed out, I was fascinated by the bruising and how ugly it was.

Joseph's x-rays

Joseph has given me permission to share this information, because it's pretty obvious that something is going on. So we might as well put the correct information out there. 

If you look to the right side you can see a dot or fleck, 

this is the part that broke off of his fibula.

Another view.

Making sure everything else looks good. 

I think x-rays look awesome. 

Joseph will be going an Orthopedic Doctor tomorrow. 

He will evaluate the break and whether or not Joseph will need that little piece surgically removed. 

We'll have the real answers tomorrow.

So, until then.

Star wars marathon. 

a tired and scatter-brained update **warning: long post**

Yard sale today: which explains the tired. okay results, quite fun actually. May do it again on Monday, or next weekend, we'll see.

My Cousin's Wedding Photos: I took my cousin's wedding photos in late July. It's 351 pictures worth of done done and done. 1st wedding jitters, over. My aunt says I should go "pro," I have some thoughts on that...

Joseph Insurance: Well Washington State DSHS, sucks. We are getting exactly "zilch" for help, after 4 years and countless applications, interviews, phone calls, paperwork run around, and some... umm bad words (hell doesn't count right? ) Joseph doesn't get "help" paying for medicare because he doesn't qualify for medicare?!? What the... he has been on Medicare (part A) since June! As of September, he will be covered by Medicare parts A,B & D. A: hospital, B: Medical and D: Medication, Confusing: why yes, it must be a government requirement to be ridiculous and confusing. Medicare is Federally funded (usually for the elderly, but also the disabled) , Medicaid is state aid. Apparently, if I was pregnant and/or  I wasn't working we'd have lots of $$ in food stamps and we'd both be insured. We make "too much money" but still fall under the set limits for the programs we've applied for, so denied yet again. Does this upset you? I want to call them out, I want to write a letter and publish it stating exactly what our struggle for help with the state has been. I keep putting it off, it's so personal, it's a lengthy story and it's scary willingly sending your own story out. But what options do we have? And he does have medicare now....huge blessing, because this weekend we needed to use it.

Joseph broke his foot. An avulsion (or fleck) fracture to his left fibula. Or in simpler terms he broke off the tip of the smaller left leg bone. A tiny little guy, the Doctor said he "should have" broken the 5th metatarsal (or long bone before the pinky toe) as well, but he didn't, and the tissue looks good. But we will be following up with Benton Franklin Orthopedic Association.. after the holiday weekend. Bad timing, he'll have to wait 3 days to even set up an appointment. They will be looking over the x-rays we had done, possibly order more tests... evaluating it for possible surgery (most of these kind of breaks don't require surgery, but some do because the bone tip is still in there.) Joseph is not to put any weight on that foot, use his wheelchair, and wear a walking cast boot.

And thanks to medicare.... we only pay 20% of whatever this is going to cost.

Shaylee work:  I officially start my school year on Tuesday, we opted to start after labor day. Pretty darn smart if you ask me. I am starting with 35 student and 3 meet & greets (meet and greets are interviews with potential students, I require an interview for those under 6 years old). I am completely floored and amazed by this, my schedule is almost full, I have extended my schedule twice already.

 I won't be playing for Kennewick High this year. This was a decision I made before the end of the school year, and it worked out perfectly: the day I was going to tell Mr. Henderson, he told me that he was moving to China! I am blessed to have such an amazing job, that I love and that pays so well.

Some other thoughts:
 We have been looking into housing options, grants, programs, habitat for humanity.. saving our butts off....  and I don't want to become what I have called a "mom-a-tographer" =  usually  a Stay At Home Mom  who buys a nice camera and decides to start up a photography business. They are EVERYWHERE, no offense to anyone who choose this, but a nice camera doesn't make you a good photographer, amateur photographer or professional either. I have always been interested in photography, I would call myself an amateur photographer. I have had photography classes, I learned on an old SLR with film!  I now have a nice camera, I have now done 1 wedding (asked, not volunteered) and numerous portraits and family portraits. I am building a good portfolio, and I have a passion for the art side of it... not the trying to make money side of it. But it might be a good idea to do so, to get us into a home of our own, that is important to us. We need that, something of our own, everyone needs their own space right?

**edit** I do acknowledge that there are some amazing women, making amazing artwork with their cameras right now. But there are a lot of others buying expensive cameras, and calling themselves photographers. And all trying to make a buck doing it. **

 Houses here are high priced, subsidized housing is terrifying here (read: scary neighborhoods, drug dealer and gangs). I like the idea of habitat for humanity, but you don't get any control over where you live or what type of house you get, and it costs $$ to apply, and takes up to 2 years to build.  I emailed someone and found the Kennewick Housing Authority application, it's 46 pages long (not exaggerating one bit) this covers HUD rentals, Section 8 vouchers (rentals, and ownership) etc etc.... lots of paperwork and all the programs have long waiting lists. And lastly I found a Rural development application... interesting, we may qualify, but it's very specific about where and what type of houses or rental properties qualify for this program. These are all  things we've considered, we can't adopt or foster to adopt until Valerie and Dustin leave the house (that's with us living here still), or we have our own place. -- this is not currently our family plan right now, but it's a factor as to why we want/ need our own place.

We've explored the option of us moving in my grandma Swanger's house,  (with her staying with us, and we'd be paying for everything), but that puts us in a money pit (old house with issues) and it's not really an accessible home with 2/3 people who shouldn't be driving. Again old house, bad floor plan, too many stairs...

So now that Joseph has medicare, it saves us lots now that we aren't paying 100% out of pocket. But not enough to get us into a home loan for a good, and accessible home. So for now we are stuck, not many programs to look at, I would  much rather have a some sort grant to put toward a house with money we've saved... and I want to be able to dictate what our housing needs are, rather than try to fit our housing needs within tight program guidelines.

Joseph should be starting with Goodwill sometime in the future, internship again... doing about the same thing he did at EnTrust, but with real potential to be hired on and maybe teach computer classes.. we'll see.

Anyway that's the update. Thoughts and ideas are welcome.

Life is Beautiful, but also so incredibly hard.

Not THAT kind of announcement...

Almost exactly a week ago, I woke up at midnight in complete agony. My abdomen both right and left and front to back was in extreme pain, so much pain and it was shooting down my legs. I was also nauseated. What ever was going on, was bad, really bad. Joseph woke up and I sent him up to get my Mom, once she knew what was going on we decided we needed to go to the hospital. But not before getting a priesthood blessing. As a result of the blessing, I was able to  remain very calm the whole time, even while my pain level was a 9 (scale of 1-10). 

After giving urine and blood samples (ruling out infection & pregnancy), they hooked me up with an IV with nausea & pain meds., (pain down to a 2) then the ultrasound tech came in to torture me, kidding, he was very good (pain up to a 4 after). They were able to determine that I had had an ovarian cyst rupture. And it was bad....

This is my left Ovary, which measured normal and looks great (size and cyst-wise)

This is my right ovary, which measured just over twice the size of the left, and had an enormous cyst that had recently ruptured. This is the biggest cyst I have ever had. 

This is my uterus, from the side. The dark shadow is free fluid (expelled from the cyst) and blood, trapped behind my uterus. The fluid is NOT normal and can cause extreme pain. 

Conclusion:  

Enlarged Right ovary = Pain

Huge Cyst Rupture = Lots of Pain

Free Fluid/ Blood = Lots and Lots of Pain.

 I was sent home with awesome pain and nausea medication.

Lots of rest & Water. 

Yes, I have been working still, but not moving much.

And my pain has been manageable during the week. 

Swelling will go down, and fluid will be re-obsorbed by my body. 

Healing slowly.

I got behind on my blogging, again

This is why...

What is that you ask, a massive, intensively itchy allergic reaction. It covered my entire body. These are pictures of days 1 & 2 of my arm and back, Mom wouldn't take day 3 pictures, which were worse than these, she said we were already scaring people (she posted this on Facebook).  This rash came from a serious allergic reaction to anti-biotics that I was prescribed for a sinus infection. We first thought that I had chicken pox, for the 3rd time. Luckily we were wrong.

I am allergic to Sulfas,  which is a class of drugs derived from sulfonamides. These drugs are used in the treatment of both bacterial and non-bacterial infections. The most common sulfa allergic reaction is the appearance of rashes on the skin. These itchy rashes can appear all over the body and can cause irritation and discomfort. Another allergic reaction is Anaphylaxis, which is quite a serious condition where the affected person experiences difficulty in breathing, increase in heart beat, vomiting, nausea, dizziness and sometimes fainting.


This was just my first exposure, I now have to wear a medical ID bracelet stating this allergy, because next time could be much much worse. Lets just say I love oatmeal baths, and Melaleuca Renew lotion, they are life savers. I am doing much better, my "spots"  or "dots" are now light pink and not welt-like. It's been a crazy couple of weeks, sinus infection to allergic reaction. 

A letter from Dr. Smith to Dr. Cooke

Dr. Smith (new ophthalmologist) Dr. Cooke (neurologist) 

(with explanations by Shaylee in italics)

Dear Dr. Cooke:

Joseph returned for a follow up. As you know he is a 28 year old young man with markedly decreased vision secondary to previous episodes of optic neuritis related to his Multiple Sclerosis. Optic neuritis is swelling in the optic nerve. It can also be one of the first symptoms of Multiple Sclerosis.

On examination his best corrected vision is 20/300 OD and count finger at three feet OS. The exam is pertinent for rotary nystagmus in all positions of gaze. Nystagmus - involuntary eye movements from side to side, up & down or rotary. Joseph's nystagmus would be considered "acquired nystagmus" because it developed later in life and as a result of his Multiple Sclerosis. His visual field to confrontation show dense loss of his central field. Joseph has extreme blurriness in his central field of vision exclusively, while his peripheral vision remains less blurred. The optic nerve show severe bilateral optic nerve pallor. Pallor also means atrophy meaning the loss of some or most of the fibers of the optic nerve, or damage. The optic nerve is part of the brain and has no capability for regeneration. Hence, the term may refer to serious or mild but always irreversible visual loss due to damage to the optic nerve. Bilateral optic atrophy: Loss of vision in both eyes. Joseph would have the "acquired" type of optic atrophy, secondary to swelling within the optic nerve (optic neuritis). Optic neuritis a result of a Multiple Sclerosis exacerbation or "flare up". We will see him again in one year.

Sincerely,

Dr. Quinn Smith

Another Day, another Doctor visit...

On Wednesday, the 23rd of February, we went to Joseph's new ophthalmologist (his last one retired). Same office though, we  LOVE them! The great thing about seeing a new doctor is that they re-diagnose (just like his neurologist did). He performed the same tests they did on his 1st visit in December of 2009. His nerves look about the same- white, damaged and constantly moving. The doctor said the nerve atrophy is consistent with the vision loss that Joseph is experiencing. The nystagmus (or shaking) is a result of MS. But the doctor was confused as to why the nerve atrophy and nystagmus happened at the same time-and so quickly, it's very unusual. He says that the nystagmus and nerve atrophy are not related. This is where I interjected MS as the cause, he agreed but added MS will usually affect one or the other not both.

He apologized that he can't do anything to improve the situation. we thought that he was a very very kind man - who felt like he was breaking bad news to a young couple (he was but it was basically the same news we got a  year ago). He felt so bad, sweet guy. He did give Joseph a new prescription he should be able to see 20/300 (on a good day). An improvement! There really isn't a better time than tax return season to buy new glasses with no insurance.

I felt a little demanding toward the end of Joseph's appointment- we asked the ophthalmologist to give us a letter stating his findings about Joseph's vision etc. (like the one we had from Dr Deitz,that we've used on countless occasions. We felt like we needed an updated letter from his current doctor) And when we went to pay I asked for documentation for the appointment, specifically the cost to us, to prove "spend down" for government insurance (post about that soon is inevitable). But they were great & we showered them with thanks. Seriously an awesome office and staff to work with (Columbia River Eye Center in Richland, if you were wondering) What a blessing.

I had a doctors appointment on Jan 24th, I met my new OB/GYN, a meeting that was way over due. I had put myself on the back burner and I was a year late for my "yearly" appointment, if you know what I mean. This doctor came highly recommended by my aunt, he is an infertility specialist, specializing in recurrent miscarriages  (my problem) and bi-cornet uterus' (my aunt's problem, she literally has two)

So the morning of the appointment I went alone, (unusual for me, I like to have Joseph with me- but I figured I'd be there for a long time) I was,  and my i pod was a life saver, I was watching a movie while waiting. Finally my name was called, did all the normal doctor stuff: height, weight, blood pressure- mine was normal by the way! I have what I like to call "white coat syndrome" I DO NOT LIKE DOCTORS, any doctor and when I go into an examining room my blood pressure usually sky rockets, then I'm fine again when I leave.  My guess is that comes from getting bad news a little too often. 

Anyway back to the appointment, after I was in my open back hospital gown and paper blanket I met the man.  He looked over my chart, got down to pregnancy history: 4 pregnancies, no deliveries; surgical history: Laparascopy a couple D&C's etc. To say he was shocked was an understatement. So we talked about what my previous Dr. had done & my current birth control. He wanted to know why I picked an IUD and why we've kept it in so long. So then came the brief (but still long) story of our married life, miscarriages, surgeries, school, moving, adoption, Joseph's blindness and job loss. He asked if I was depressed, I said "not right now", he said that's amazing because he is depressed just listening to our story. Then he returned the favor and shocked me by saying "why don't we remove your IUD today? It will only take like 30 seconds. As your new doctor I am advising you that it's not going to help to wait anymore. I want you to be pregnant, don't you want to be pregnant? Let's take that thing out."  And that's basically verbatim, as it now permanently in my mind. I about fell off the examining table (which would have been a little awkward in a hospital gown). The good Doctor went on to lay out our game plan: " You'll call me the moment you get a positive pregnancy test. You'll come in and we'll do blood work and an ultrasound. Because of your history you'll probably need hormone injections, I will want to see you weekly." He had gone above and beyond my expectations, I had set for myself. And he surpassed my list of demands, so to say of what I wanted in my doctor, (I had a mental list because of some really crappy doctors I had seen previously).  

With adoption out of the picture (temporarily, we hope) pregnancy has crept back into the picture of possibilities. I couldn't make a decision like that without Joseph and definitely not over the phone with him either. So we proceeded with the normal yearly exam & on my way out he had me sign the release forms to get all my old records from Idaho (another reason I hesitated- he needs to see those first) He told me that I am young and healthy and strong- wow. I haven't heard those, at least not in a long while. What a strange day it was, I left the office in a daze, that wasn't what I was expecting at all.. and on my way out he met me in the hall put his hand on my shoulder  and said "Talk to Joe and call me when you decide to pull that thing out."

Crazy long post about a crazy long weekend...

Well we're home from our whirlwind weekend. Busy? Yes. Fun? Yes. Wonderful? Definitely. We arrived Friday evening in Idaho, later than planned because of construction- what seemed to me to be a HUGE last ditch effort to finish before snow comes. Other than construction the drive went well and we listened to Harry Potter 3 Audio book, that seriously helps the long trip go by faster. After arriving we were chauffeured to the church to help set up for Sam and Kaelee's reception. The colors were blue, black and white. The reception decor was simple and elegant. I loved it. While at the church we were able to visit with Joseph's grandparents and catch up.

Saturday:
We slept in. And slowly got ready for the day. I even got in a nap before we were due to show up to the temple! It was an afternoon sealing, the sealing room happened to be the same one that Joseph's parents were sealed in. The room was filled with family and friends. It was beautiful. We feel so blessed that we were able to be there. After family pictures we filtered over to the church for lunch. We went home & switched shoes & put our feet up before the reception started.

The reception was awesome. There was a pretty constant flow of guests. We ended up at a table just off the reception line. So we always had someone visiting with us, and even a line of people waiting their turn to talk to us. It was really enjoyable. But by te end of the night we were exhausted & our voices were raspy. What a great night!

Sunday:
The family let us sleep in, and sleep and sleep. We had more family come to the house to visit and eat lunch before heading home. It was a slow, relaxing, rest-filled day. We did play an electric Uno game. And finish the day off singing hymns around the piano as a family. Jessica played the piano for most of them, John played the ones he knew, then I took my turn to play. It  had been something of a tradition to sing hymns around the piano when we came to visit on Sundays, when we lived in Idaho.

Monday:
We slept in once more and slowly packed up to travel to Spokane to stay with the Toth's, and go to Joseph's appointments on Tuesday. We drove north up through Montana on over to Washington. It is a beautiful drive, much better than the way we usually go where it's mostly desert. The drive through Montana is mountainous, had lots of trees and we were in and out of rain so the clouds were gorgeous. Joseph even used the camera to take some pictures. We arrived at the Toth's in time for dinner. We were able to relax and visit with Kaelee's brothers, then staying up way too late talking, but it was wonderful to visit

Tuesday:
We got up and got ready for Joseph's neurology appointment, had a fun time finding the new office- actually it's much easier to find now that it is located in Holy Family Hospital.
Nuerology Appointment
The nurse Shy, took Joseph's vitals, then noticed his "shoes", she didn't want to call them shoes, she just kept saying they were a trip. Pretty soon we had the other nurse and P.A. in there to look at them. Aline Snow the P.A. is the one that saw Joseph. She was awesome! She did a lot of the same tests and physical assessments that Dr. Cooke does. After teh tests she asked  lots of questions the main thing she wanted to address was Joseph's walking. He still has spasticity, she suggests yoga & more stretching. We will purchasing a yoga DVD that is meant for those who have Multiple Sclerosis.  He can do it with his vibrams on, he will still have full movement and not slide around. She also suggested more water and more fiber. And prescribed a medication for spasticity.

Neurotherapy Appointment:
Intially we thought it would be a consultation, you know, just lots of talking. At first it was then Dr. Thurber wanted to go ahead and do a brain mapping to see if there is anything he could do, anything that can be improved. Brain mapping is very interesting, He hooked up sensors to his ears (those were to filter out any stay waves) hten he had another sensor that he would move to different sites on Joseph's head to transmit and recieve electric waves. The scan is is used to see if there are any areas in the brain that  are over, under or dis-functioning.

Dr. Thurber can read the waves and maps and know they mean and know what they control, pertaining to the body. It's incredible. He taught us that the nervous system's main job is to filter out unwanted information, so with degenerate diseases like Multiple Scerlosis, can cause the Nervous System to filter itself out.

So Dr. Thurber performed a brain mapping and did a small treatment at the same time. While the sensors  were  on Joseph's head I would look at a screen and see the waves (delta, theta & alpha). Dr Thurber printed out the results and brain maps,  there were a series of maps that were all different colors. Each the maps showed different areas of his brain, and the colors and patterns or locations of certain colors each meaning different things.

 What we learned from the brain scans:
One scan showed his brain works well, with the exception of one small area, over the left side
(which controls the right side of the body) showing a difference in efficiency. Which tells the Dr. that Joseph is left handed and that his right side has had some struggles. A correlating bar chart showed that Joseph's brain is rigid, or lacks flexibility which could manifest itself in personality or physically.  Another map showed efficiency, the right side of Joseph's brain is more efficient, left side inefficient. (True, his right side drags when he is tired). One scan was to see if there were any injuries to his brain, none were found. The most interesting scan was a colorful one, with a white center. The white part is supposed to be towards the back of the brain. Joseph's was more center, which shows that his brain is trying to "re-wire" itself to repair his vision. His brain is still trying to see, which is normal for someone who has  optic nerve damage. It showed his brain is compensating for his lack of sight, which is true, his hearing has definitely become more sensitive.


Dr. Thurber has heard of Vibram 5 fingers, recommends them and said we were smart to try them!
He had us purchase Nikken Magsteps, or magnetic insoles. Joseph has had them for 2 days now. They are supposed to help enhance body and space awareness. And help his body communicate, which is a common problem with MS, body and brain not communicating like they should.

Sorry for the Information overload, but now it's all written down and here for you and us later on.

Info on Brainmapping click: HERE

The Doctor Joseph went to see click: HERE

Due to severe

ITCHY-NESS. I will be taking a little break from blogging lots of stuff. Apparently I have developed a sun allergy, or photosensitivity. Definition:A sun allergy is an immune system reaction to sunlight, most often, an itchy red rash. The most common locations include the "V" of the neck, the back of the hands, the outside surface of the arms and the lower legs. In rare cases, the skin reaction may be more severe, producing hives or small blisters. 

I have hives/ welts across my shoulders, "V" of my neck, and legs and the tops of my  feet and they itch like cRaZy! Which is really inconvenient, because I just started teaching swimming lessons. Ugh, during some of my super itchy spells I seriously contemplated canceling my 2nd session, but the $$ is too good, I will just be swimming ultra-modest style, spandex shorts and t-shirt over swim top.  Add SPF 30+ yup that'll be me this summer.

 I spent this week trying to figure out what the heck was going on. We are missing our ward campout tonight because I am miserably itchy and we (my family) are trying to get all ready for Dustin's farewell on Sunday. Oh well. Just grin and bear it, excuse me while I go hide and slap on copious amounts of lotion.

**UPDATE: (Saturday July 24th)  Apparently sun sensitivity runs in my family, my mom had it- but it only lasted a couple years Valerie, my sister has it too, as well as one of my aunts. I will be wearing a super light weight jacket when I go outside, and using Aveeno lotion with oatmeal for the itch. I feel much better today.

-S

B-u-s-y

On March 16th

We went to Spokane.

Appointments (P.T. and Neurology) went well,

Joe is doing well.

Lost a little muscle tone- understandably so, he's not working.

But small improvements overall.

He does NOT need a support cane or stick,

using the white cane should be enough,

but he may need to learn to use it completely without sight.

Saw Sharon - Technology Counselor (DSB)

She's awesome. She's hilarious.

We learned a lot about how to make the computer accessible for Joseph again.

and programs and electronics that can be purchased for him.

He now has a talking watch, large number alarm clock,

talking calculator, and a digital voice recorder.

We will be starting Braille this week.

Another post coming soon.

*s

Going on hiatus..

Well to get right to the point, I will not be blogging for a while and this is why:

Joseph and I paid a visit to the ophthalmologist (eye specialist) on Tuesday. Joe was diagnosed with partial blindness, or visual impairment, due to nerve damage, and probably caused by his MS. Since it is nerve damage it is medically irreversible. This new diagnosis has been a shock and been pretty devastating for the both of us. As of yesterday he is no longer able to work at Toyota. We are seeking out help and resources from Blindness centers and vision rehabilitation services, also unemployment and we already have an appointment for disablilty.

So I will be leaving my morning job (keeping my teaching job if possible) for something more full-time while we work things out for Joe. We have already hit the phone lines hard talking to state foundations for the blind and we will be in touch with a vocational and rehabilitation counselor, from the Department of services for the Blind, soon after Christmas.

Joseph and I have already received priesthood blessings from my grandfather and from the sounds of it he will not be regaining his vision, but things will somehow work out. We were comforted by the blessings but that does not take away the hurt or difficulty of the situation we are now in. We have also been fortunate enough to be able to visit with our wonderful bishop last night and he is on board and ready to help with whatever we need. He has been a great support for us.

The timing is awful but good at the same time, I am on Christmas Vacation from both from my jobs and so I have the time to dedicate to contacting everyone we need to, and accessing the help we know we need.

**Disclaimer*** we are not looking for pity, or unsolicited advice, however we are looking for prayers and words of comfort from our family and friends during this difficult time. Thank you for understanding.

Wait, what day is it?

Have you had one of those weeks?
We have.
When it feels like it should be Friday and it's only Monday?

or It feels like a Monday but it's Wednesday?

What through us so off is lack of sleep and anxiety over Joe's Appointments on Tuesday. They went so well! 1st was his Physical Therapy Appointment, we did it there in Spokane because they have a Multiple Sclerosis specializing Therapist there. And if she was to decide he needs weekly visits or something we would follow up locally. But she diagnosed Joe as a Spaz (his words not mine). Joe has Spasticity in his legs, it is what is making it hard for him to walk lately, especially after this last flare up. Basically it means that the muscles in his legs are tight and cause spasms and it can make the muscles feel stiff. Joe is in the middle in the scale they rate him, so not so good but not so bad either. (for more info go here) He has been given a list (with pictures) of stretches he needs to do at least twice a day, and he should try riding a bike too to loosen up those muscles (and Dad has already set him up a bike on the trainer and he is ready to go, after he did that they talked about really getting Joe ready for a cycling event or something?! boys!?)

Next was lunch of course, got to feed my boy... then the MRI. I love how close everything is, the MS Clinic it technically an extension of Holy Family Hospital in Spokane, and Inland Imaging is in the hospital itself. I really enjoyed the guy that helped Joe get ready for the MRI, he was young and has a great attitude for the kind of work he does (he had just met Dr Cooke that day!) After he was set we left him with a phone and walked around (otherwise I'd be going nuts waiting, it takes a while you know). Joe said the MRI went well (as well as you can expect being put into a tube of magnets that buzzes and bangs- you should hear his impression of it..lol)

Joe will be in to see Dr. Cooke again on Nov 30th (not soon enough, but soon enough, he's hard to get into) At that appointment we should be making the decisions on medications and getting then started ASAP!! And we will be so on top of that. He has waited long enough, but we do understand that the MRI had to come first and that because the previous Neurologist didn't give Dr Cooke the requested info (Grr..) Joe was re-diagnosed with MS, which sounds weird but it's good, they agree and Dr Cooke didn't need to see what another Dr had to say he did his own tests and came to *almost* the same conclusion.

What astounds me is how often we have heard Dr Cooke and staff ask why, why hasn't this been brought up before? Why didn't you know he had Spasticity? Why haven't you seen a physical therapist before for MS? Why didn't they MRI your spine? We would like to know that as well, but we are still grateful for the care and treatment that he received with his last Doctor, he saved my husbands life. Before he was my husband, and now Dr. Cooke is saving his quality of life and giving us the resources to do everything that Joe needs.

I love my husband Joseph, he is more than worth all the hassle it is to take care of MS. He is my miracle and my example he is so strong and brave and I will stand next to him through whatever else life has to through at us.

-S

P.S.
more to come it has been a seriously weird week. :)

After a long absence...

...it's time to explain. Coming from the notion "if you don't have anything nice to say, don't say anything at all." My blog went silent. I didn't really have much to say that would be uplifting to you readers. While I don't mind blogging about most aspects of our life, it's during the hard times, times when we are struggling that I choose not to spend my time on the blog. Now I don't want the blog to be full of fluff, I'd rather keep it real. And in keeping it real, life is hard. And lately we've been having a hard time. Joseph has MS, this fact isn't new to the blog or to people who know us. But MS is hard. Hard on Joseph BIG TIME. Hard on me to know how to help him, and hard to watch. It's hard to be a poor young couple dealing with MS, medical bills from infertility, and Adoption Paperwork.

Having a husband with MS is hard. MS is an expensive disease.

The MRI's = $$$

Neurology Visits = $$

Treatments = $$

Blood work =$

A Husband who is healthy and happy =

worth more than all the $$$$$ in the world.

We are extremely blessed to find Dr Cooke (special thanks to Gma W and Sheila) He has opened doors for us we may not have been able to find ourselves. Dr Cooke is a member of the MS Society which helps him keep up with the latest in treatments and such, as well as keeping him in contact with other neurologists that specialize in MS. He helped us find MSAA, who sent Joe his cooling system, who is paying for his MRI on Tues (and spine MRI next year). He showed us how to get Joe's (future) medication for little or no cost (hopefully happening really quickly after his MRI on Tues.) MS is still really hard, but Dr. Cooke has already been a HUGE blessing to us, and we are so lucky he is only 2 hours away!!

So what has kept us away? Paperwork! Yup. Basically we were swimming in mud grasping at straws to get out. Lots of paperwork, lots of things to make sure you have done perfectly, lots to communicate to insurance, lots of frustrating phone calls to the Imaging place (who refused to talk to me, and would never call when Joe was home to talk to them!!- stupid HIPPA. We took care of that) 5 or more phone calls to the Clinic to make them understand that the Imaging center needed a new MRI order BEFORE we could make Joe's appointment because the original was 30 days old (yes, the paperwork took that long) and we'd need a new one. All while making sure that we could schedule his Physical therapy for the same day and not conflict. As you see this all finally came together. We go to Spokane on Tues. We are going to try to have a date or something afterwards, because Physical Therapy and MRI's aren't really fun. But Totally necessary.

So after being so tired my eye twitches, a month of paperwork, late night talks, the flu (Joe) extra cuddles, mucho phone calls, playing phone tag, a few tears and chocolate. Things are looking up. Hopefully things will move faster.

-S

For the love of a Neurologist...

haha. Good title, eh?

We LOVE Joseph's new neurologist... Monday was his first visit to his new doc. Here's how the day went:
*Woke up early, left a little late, took Mom with us (to make sure we could find the place- she knows Spokane better) Put the pedal to the metal walked up to the check in desk exactly when they asked us to be there-couldn't have timed it better. lol. We had barely finished the health history when he was called back. The nurse was nice, she took his vitals and also got the info to contact Dr. Vincent- his old neurologist (she needed this because even though we formally requested his medical records over one month before his appointment, we haven't recieved it!! Grr.)
*Anyway Dr Cooke came back really quickly. He got a really detailed history, and he took tons of notes. He spent the next hour or so testing everything (Joseph's reflexes, nerves, balance, vision, hearing, strength resistance and others I couldn't figure out) He was very hands on, and a little old school, he had to see it, test it and write it down. Although he was a little old school testing he is extremely knowledgeable and "in the know" when it comes to medications and treatments for MS. He talked to us about different types of treatment, what he reccommends and he entertained questions about things we have researched.
* He reccommends that Joseph start on Rebif, and get an MRI of his brain and spine (He hasn't ever had a spine MRI) Dr. Cooke also wants Joe to see their Physical therapist once (then we can follow up with more if needed locally)
* Overall I don't think that Dr. Cooke and his staff could be any better or earned any more brownie points- they are spectacular!!

** MRI Follow up** MRI's are REALLY expensive so I did some calling around and MSAA has a program to help MS patients pay for MRI's, it looks like we qualify to have his MRI's paid for completely. So we are currently working on getting all that paperwork done.

** Medication** Rebif is a medication administered 3 times weekly by shot. We've read through the packet, watched the DVD, and everything else, we think it's a good way to go. We feel good about it. And since he can't go on it until after his MRI's there is still time. Good News: Rebif has a program to help patients pay for it, at most we'll pay $50/month, or nothing

***To sum up*** Dr. Cooke & Staff = Amazing!! It's worth the $50 gas (1 tank for the 260-ish mile roundtrip, then the tank filled up again in town), $20 food & $25 co-pay for 2 hours with Dr. Cooke. When compared to what we used to do, pay the same for a 30 min. drive and 15 minutes with his old neurologist. Can you say Score??

-J&S

Is is possible to just take a break from life?

Nope, probably not. It would be an understatement to say our life is eventful.

*Suzy is running again, but we are looking to trade her in for a more economical vehicle (and saving ourselves some $). Poor Suzy had gas syphoned out, man we were ticked.... at least it was only about half a tank.. anyway now we have a locking gas cap.

* Joe, well he has had a little trouble with his eyes and balance lately so we had taken him in to have his eyes checked and found out he has optic neuritis in both eyes (or swollen optic nerves, a symptom of MS) so we had to look into Neurologists here, something we were already doing. Turns out there are lots of Neurologists here, not many that specialize in MS and not many with good reviews (Rate your MD online and other patient feedback) So we made an appointment with a family doctor (at an office my family has been going to for years). Before the appointment we knew the kind of treatment Joe was going to need, he needs steriods. Joseph had an appointment with a doctor that is new to the office, Dr. Burrup. I couldn't go to the appointment so I sent my mom armed with all the paperwork filled in and a list of Questions I wanted answers to. Turns out Dr Burrup is totally awesome, and LDS. He got us hooked up with a handicap placard, I worry about how far away we have had to park sometimes with the heat here. He couldn't prescribe the dosage he would need so we had to try to get him into a neurologist, but you can't just get appointments right when you want or need them. So to get things going (and since Joe isn't allowed to go to work for a couple days or until he could get treatment) and you know Joe, he does not sit still. So we went to the ER, they have on call neurologists and we wanted to get treatment started right away. Our plan worked and we spent 4 hours at the hospital yesterday . Joseph is on a three day steriod infusion treatment, he has an IV in his hand we will be going today and tomorrow. Then a follow up appointment with Dr. Burrup on Monday and more steriods but in pill form. Our doctor is trying to get us in sooner with a MS specializing neurologist in Spokane that we found, at an MS clinic. We want to look into LDN treatment, more info to come on that later. Joe says he is feeling better, and he looks pretty good, I think with his time off he may sun a little by the pool.

* After the hospital we got food, we were starving. We stuffed ourselves updated family and left to go babysit my cousins. You can tell Joe is a softy, he got his nails painted, many colors, many layers and some even with sparkles. Those 3 girls were giggling so much. It was pretty funny.

Well that's it for now. I hope to be better about updating, but we've been pretty busy.

-S

Grandma Update...

Grandma wasn't feeling too well, so my aunt took her to the E.R. she is doing good. But she is dehydrated and she is short on blood- weird, I know. This is oddly like the event that led the doctors to her cancer in the first place. Anyway she is receiving blood transfusions and getting re-hydrated. They are keeping her over night for observation, we'll be off to see her soon. Still, such a trooper. I am glad to report that this is the first visit to the hospital that wasn't a scheduled appointment during her treatments. What a woman!


She probably won't like that I put this pic up, ... she was telling us not to take pics, but she is looks just fine.

-S