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

Lucky Duck!

Joseph got his first pair of Vibram 5 finger shoes.

After a friends comment, 

Thanks Meagan!

I took him (and my Dad) to try them on at REI

Then after more research, 

we found that they really should help with balance and muscle tone.

A Godsend for Joseph.

I am a little jealous, I wanted a pair first.

But I will get a pair... eventually, I will have to order them in.

I had a feeling to go to REI yesterday,

they had his size in, (Eur 40).

He can already feel the difference.

He is already walking a little better.

I will get a picture of them on his feet..

 but these are the ones that he got:

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

A little Q & A, mostly A

Due to the plethora of Questions we've had to answer over and over... here's some Q's with the A's...

About Joseph & MS

Q: How is Joe doing?
A: Really great, considering his MS. He is a walking miracle! He works hard to make sure his MS doesn't effect him and his goals.

Q: Is Joseph currently on medication?
A: No. He was on cellcept,basically a mild form of chemo, it was pretty rough on his body. His neurologist in Idaho had us wean him off cellcept because it could cause a scary disease with no symptoms and often fatal. It took over 4 months to make the decision to wean him off & 6 months to wean him off.

Q: Does the lack of Medication cause flare ups?
A: No, not necessarily. Flare ups are the normal course of MS. Medication can help lower the severity and can sometimes reduce the number of flare ups but we do not feel like his most recent flare up was caused by lack of medication. He has been stable with no flare ups for over 4 years until this year.

Q: What are your plans for Joseph regarding medication and treatment?
A: He has an appointment on Monday with Dr. Roger Cooke an MS Specialist, in Spokane. We will see what he recommends. We have looked into LDN, Chiropractic care and others. But we will be seeing what his new neurologist has to saw regarding a course of action for Joseph's care.

About Adoption:
Q: How is the adoption going?
A: It's on pause, we've done all we need to do except pay the $500, we had it but it's gone because of down payment on our new car and paying for Joseph's treatment for his flare up. We are pausing the process because Joseph's health is more important than babies. We have every hope of getting it going again and having the $$ quickly but our money is going towards Joseph.


Any more Qs, leave a comment we are happy to answer!

A Quick little update...

* Thanks so much for the comments and well wishes I appreciate it so much, it's been tough, but it's nice to know how to get the help we need when we need it.

*Our cousin Luke is in the hospital, please send prayers his way too!

*Joe is doing much better, he is frustrated with his vision, it's better but not best... His turn around with the steroid treatment was pretty phenomenal to see. He is walking really well, and doing good all around with little to no side effects from the steroids, just sore from the infusions. He is on a wean down dose of steroids for the next 10 days. He has a follow up appointment with the eye doctor and we're still working on the Neurologist we want to see. I may just have to get really pushy!

*Suzy is gone. We traded her in while she was running and still worth something. We are now the proud owners of a 2005 Kia Rio his name is Julius. He is orange, a pretty red-orange.

*We both have talks on Sunday. No assigned topic, trying to think about what I need to speak on...but life is keeping me pretty darn busy.

*Thanks again for all the comments and visits to the blog, I will try to update more. :)

-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

All done...

I am all done updating today, I know if some of you have been checking our blog often I have made like a million changes.. all done. I fixed my label cloud! yay! I changed the background,and font and put up too many posts for one day... haha well finished ...for today! :)

P.S.
If school budget allows I will have two, count 'um two jobs at Kennewick High. What you ask? A marching band tech and an accompanist. Yea my plan worked,they can't live without me. They (band director we'll call him "Baldy"- don't worry he likes it, and Choir director let's call him "Coach" - he does coach football) are working to make sure I will come back next semester and get paid!! yay!

Joe is doing good at work too. He enjoys his job. He is acclimating to the Kennewick heat very well. He does get wobbly but that's it! That is the only MS symptom he deals with right now. And I am working on getting him in to see the Chiropractor/Natural Path/ Nutritionalist I saw here. We feel so good about it, I hope for results just as good.

So cross your fingers for both of us! :)

-S

The Amazing Man I am married to...

Pill update: A week ago Joseph took his last pill. Amazing! And this Sunday we had our first mini fast together, (without medication), I can't fast more than one meal and Joe wasn't able to fast with his medication. It was a great experience. So far we've only seen improvement, Joe is doing well (except he gets mad when I tickle his feet, he has even more feeling in them) his balance is better, he has more energy, all in all he is doing great.

Besides this good news last month we were able to make a trip home to the Tri-Cities where Joe had a meet and greet-type interview with a service manager of a Lithia Motors Store... I drove him there and spent an hour and a half waiting for him (and going a little crazy!!) It was amazing!! A long interview, a wonderful thing, it went very well. Joe interviewed at the Lithia Ford, Joe doesn't like Fords (mostly) and the interviewer with shares this opinion, I find this humorous, but the man did say that he may hate the make of the car but he loves his job! This week he made contact with the man that gave the original job offer (and set up the interview), Joe came out with a smile after hanging up with him.... We are very optimistic, nothing set in stone..yet. :)

I just wanted to share some amazing news and say I have the best Hubby in the world, there is so much more I could say but that would be a really really long post! I love him and I am excited to walk with him at graduation in April and to be entering the real world in a few short months!!

-s

November what?!

Update on Joe and pills:
Things are going great, this month Joe is on one pill a day! This is what he has to say about his progress:
I feel better and have more feeling I can't wait to be free of medication. Thank you for your prayers

What Shaylee has to say:
I have noticed that his balance is a lot better and his energy level is up, we haven't had any MS incidents since we started reducing his pills. He is challenging himself everyday, he rides his bike and he is working on walking down stairs with out relying on the hand rail. I am so proud of the progress that he has made and so happy that things are going well.

we love you all !

- J & S

A "Real" Update

Joe and Pills: Starting next month Joe will only be taking 2 pills a day. He has made already made some improvements. He used to have a hard time keeping proteins in (like eggs), since reducing his dosage he has keep them in, and he has gained 5 pounds. He even had to loosen his belt one notch on Sunday (hee hee) I have noticed that he has more energy too. There are other small improvements but those are the main ones. He is doing well and excited to be on his way to being pill free!

Paperwork: We are trying (still) to get our password and username for the LDS Family services website- now worries I am calling the man in charge everyday this week. All we want to do with that now is put up our names and a couple pictures so a birth mom can get a little peak, then when the paperwork is done and home study approved we will put lots more online.
Right now I occupy my time scanning in our baby pictures from family photo albums, we are supposed to have a photo collage in our paper work (2, 8- 1\2 x 11" pages) of our family and since our immediate family is the two of us, we were thinking we could show a little bit of how we both grew up, and recent pictures of course.

Other than that we are doing what we can to be ready for school to start up again in a couple of weeks. We are both excited and not so excited about it, we can't wait to be done!!

I am quite bummed out this week, we have three friends that are pregnant with their second child, all of which I was pregnant with for their first. It's hard having friends that had their babies when we lost ours.

Well that is all for now. Any Q's are great, we'd love to answer any of them!

-S

Family Fast

We would like to have a family fast. We went to Joe's nuerologist today and we are starting the process of weening him off of his MS medication, we don't believe that he needs it anymore, and the risks of taking the medication are getting too great the longer that he is on it.
We would also appreciate it if we could keep in mind the same day birth moms, not just a birth mom for us but please pray for those young women who are faced with terribly hard decisions, that they may be guided by the spirit to do what is right for them. Thanks so much. We love you all!

-S&J