Lois & Clark Forums Forums General Discussion Off Topic First shot

Normally, I'd just say prayers, but I know that not all of you are Christians and I don't want to exclude anyone.


For those of you that have been around since Feb 2001, you will remeber that I temporarily lost my eyesight to something called optic neuritis. It was not MS realted last time and I am pretty sure it's not this time.

Only it's going much faster this time.

Last time, I got eye pain in January and didn't develop blockage of my vison until Feb 25. This time I got the eye pain on Jan 4th. They tested my eyes and everything came back negative(other than I am extremely near sighted.).
This last Sunday, the 11th I woke up and I didn't have any blockages per se, but I noticed a dimmness of the vision in my right eye. By the evening I was already noticing the constant shifting patterns that has started to overlay everything. In 2001 this didn't happen until the first week in March. At this rate, I should not be able to see at all in my right eye by the end of the week.

If the pattern continues, I should start loosing my vision in my left eye by the end of the following week.

On top of all this, about 3 days prior to Jan 4th, I was starting to feel cold all over and was expecting to to come down sick with the flu. instead I started to get the eye pain.

Two days later, I had some difficulty with constantly needing to urniate. It got progressviely worse and it was interfering with my sleep to the point that I have not been getting more than 2.5 to 3 hours of sleep. this is causeing me to have the shakes and to be rather irratable at ti9mes.

I found out on thursday thatr i have Prostatitis. its very painful, to say the least.

so i am dealing with both conditions at the same time.

I could use all the prayer support I can get.

So could Elisabeht and the girls.

Oh James, you'll be in my prayers, as will Elisabeth and the girls. I hope and pray all will be well soon. Take care.

Oh, I'm so sorry James. When it rains, it pours. You and your family will definitely be in my prayers.

God bless,
JD

James - all of you are in my prayers...

Carol

James, you and your family will be in my prayers.

So sorry to hear that, James I wish you the very best!

Michael

I am so sorry to hear about your health woes, James. You and your family will be in my prayers.

I am so sorry to hear that. Losing your eyesight must be scary, to say the least. (I hope you can still read it - or get Elisabeth to read it to you...) Of course, you're in my thoughts and prayers, too. *hugs (chastely)*

ahhh, I'm so sorry to hear this, James!

/sends good thoughts and positive vibes.

Yes, Lara. So far his vision loss is only in one eye. The vision lost is a gradual dimness with ghost images that dance all over the place. Since the pain is in both eyes, it's possible that the vision loss will be in both eyes this time, as well.

For those who don't know, optic neuritis is almost always associated with multiple scleurosis. James has been tested for it twice and he doesn't have it. (If for no other reason than he would have more than the one disorder in seven years time.) They know that it is caused by inflammation around the optic nerves, but the cause of the inflammation wasn't definitively found last time.

Anyway, thanks for your prayers. God has been faithful and we really are at peace, even if we are so loopy that we're tired.


Elisabeth

I'm so sorry to hear this. You and your family will be in my prayers.

Take care and, I hope it's not too cliché to say, try to have a positive attitude.

Bob

I am so sorry to hear this, James. As someone who lives with MS on a daily basis, I'm glad to hear that you don't have that.

And, as you know, I've also been dealing with eye issues (2 major and 1 minor surgery on my right eye and 1 minor surgery on my left eye in the last 8 months) so I definitely am symphathetic.

You and Elizabeth and your family are in my prayers.

Nancy

I'm sorry to hear that, James. I'll be thinking of you and sending good thoughts your way.

Ann

I will definitely keep you in my thoughts and prayers.

I again have Optic Neuritis. Since last Monday, my field of vision in my right eye has dropped from 98% to <25%. The color saturation has dropped from 94% to 15%. I expect that by Thursday that I will stop seeing out of that eye entirely.

I have an appointment with a Neurologist, the same one that I had the last time. It is tomorrow at 9:30am. It is in Big Barnes, so we well have to leave at around 8am.

Until the infected prostate is taken care of, they cannot give me the treatment for the Optic Neuritis because the two would interfere with each other, to my determent.

As long as my left eye remains clear, I should be ok, except for driving.

I am sure that things will get better, it will just take a long time.

Please be in prayer for Elisabeth and the girls, as well as myself.

James, who is glad you your support.

James and Elisabeth, you both are in my thoughts. Hugs to the two of you and your daughters.

Mona

I'll be thinking about you and your family and wishing you all the best. Hugs to all during this difficult time.

From James who is too lazy to unlog Elisabeth and log myself in.
-------------------------------------------------
Sorry, I've been in the hospital since last Wed. the 14th. As soon as the Neurologist talked to me he said that I should be hospitalized.

They ran all kinds of tests (x-ray(just because), MRI (I hate those) and Lumbar puncture, which is the new way of saying spinal tap. They have a new way of doing it so you only have to be flat on you back for 1.5 hours. I laid there for 2, just in case.)

I was poked and prodded about every hour or so.

Yesterday(friday), by told me that I would need to be hospitalized for at least another 4 days. And that they had a tenetive diagnoses neuromyelitis optic (NMO)
Here is the linke http://www.ninds.nih.gov/disorders/neuromyelitis_optica/neuromyelitis_optica.htm

They won't have a firm diagnosis until Monday or Tuesday next week. But they are pretty sure.

The prostate issue isn't really involving the prostrate directly. the NMO is causeing the problem.
It not only affects the eyes, but anything attched to the spinal cord. This time it nailed my bladder shut. So they have be doing a straight Cath to my bladder to relieve the pressure. It isn't fun let me tell you!

Anyway, around noon they sent up physical therapy nures to put me through the paces and had an outpaitent PT nurse put me through the paces. 30 minutes later a nurse came into instruct me on how to do my own straight Cath when I was at home. They were going to let me go home! I missed my family, but I didn't think I was able to go home yet. Oh, I also have to give myself my own infusion of the steroid for the treatment. I am having a home nurse come in to show me how to do it. They were even new enough to give me a new IV port before I leave.

I found out that this was Insurance related. GRR!

Anyway, I had my first steroid treatment and the results were greaat. Instead of only being ro read the first line on the eye chart and part of the second line. I could read the top three lines (mostly). The mild pain in my chest went away. So definite an improvement.

As you may have guessed, I am at home. I've cathed 2 times but I am not as good as a nurse but I do get some relieve.

Please pray that I can urninate on my own soon, I'd rather be half blind and can urniate then not urinate!

I guess I should be happy that it got locked in the OFF oppsition, huh?

That is all for now.

James

James and Elisabeth -

You continue to be in our prayers. Am sorry about the insurance issues . Glad to hear about the improvement. Please keep us posted.

Carol

I'm sorry to hear you still have problems, but I'm glad to hear you are better, James. I hope the bladder problem gets better soon.

Ann

I'm still keeping you in my prayers, James. This kind of thing can be terribly frightening, especially when you don't have any idea why it is happening.

Here's hoping the medical people will be able to figure out what is behind all this and do something more definitive about it.

Nan

You're a trooper, James! I had a mild chuckle that they've renamed the spinal tap. Mine knocked me off my feet for five days! Hang in there; next round of my liturgy of the hours has your name on it.

God bless,
JD

My best wishes are with you and your family!

Kathryn

James and Elizabeth you and the family are in my prayers.

Update 01-18-09

Ok, the good news, the sight in my right eye is improving slowly. I can see the four line of an eye chart. The colors on it are off in the right eye.

Basically, I am not seening the red end of the spectrum. I stop at yellow. Purples look like blue and red looks black. But only in my right eye. I can see color perfect in my left eye, which is my dominate one. I am confident that I will get the vision back, but not so sure about the colors.

The NMO still has a grip on my bladder, literally. I can urinate a little, but I still have to self cath, but it is getting easier, so I think the sphincter muscle is relaxing.

I am still on steroids, and will probably be so for at least a month.

We should know in Monday of Tuesday if the tenative diagnosis is the actual diagnosis. I would rather know that I have NMO than still be up in the air about things.

Keep praying for Elisabeth and the girls, as well as me.

James

Hi James!

This sounds like semi-positive news. I wish you and your family the best for a complete recovery and getting a diagnoses that helps to keep it in check.

Michael

Yes, it sounds as if you are improving, if slowly. I, too, hope that you will get an actual diagnosis, so that the doctors know what they should treat you for.

Ann

And I have something to tell HR...
James

From Elisabeth and myself.

Self first.
Eyesight slowly improving, getting so see something after yellow, but not full color retention yet.

Bladder still iffy

This is from Elisabeth.

Gems from the Journey

While this isn't the path that anyone would choose for themselves, I would be remiss if I didn't point out the blessings that I found along the way.

There was a great blessing in the way this was diagnosed. Seven years ago James and I took turns being terrified. We wondered if the loss of eyesight was permanent. James grieved the ability to watch his little girl grow up. We were so happy to test negative for M.S., content that this was just a one-time fluke.

Many cases of N.M.O. are misdiagnosed as M.S. and, therefore, are treated with the wrong medications during remission. We never travelled that journey. Furthermore, we weren't diagnosed until after we had witnessed that full recovery is possible.

The second time around wasn't nearly as frightening as the first. God withheld the diagnosis until the fullness of time when we were ready for it.

In addition, we know we've been spared from the worst of the disease. James experienced numbness, but no paralysis. He felt pain and tightness across his chest whereas it isn't uncommon for the muscles around the lungs to contract. God set boundaries around James health.

It hasn't escaped my notice that James was struck with the initial pain on a Sunday, a day of rest, followed by the manifestation of optic neuritis on the next Sunday. I truly believe this happened to rob us of not only our hope, but also our rest. Yet how can we fail to rest when God's peace is so pervasive?

Another gem comes from the effect on our marriage. I don't remember when the last time that James and I went out on a date. It wasn't during October or November when the fiscal year precludes that. It wasn't during December when we had houseguests and illness.

While a trip to the hospital isn't a romantic setting and while there are continual interuptions in the neurology ward, we had a day and a half where our only responsibility was to rest. We held hands, we talked, we went for walks, watched some of James' favorite T.V. shows, found humor in odd settings, and lived in ways we haven't lived for nine years.

Even at home, much of that hasn't gone away. You see, I have to sit at James' side because he is frequently unaware that his pain level is rising until it has gotten out of hand. It's a definite gem to just be together.

Another gem has been the outpouring of love from family and friends. I've had literally a hundred people offering to help in specific ways, in addition to prayer. Since I've only needed help from about seven people, it just goes to show how abundantly God meets our needs. He gives richly, above and beyond our wildest dreams.

In the same vein, He has reached out to us through His Word. The Bible study that I was supposed to finish on Wednesday (I freely confess I didn't get it done until now--Sunday) had me looking at II Peter 1:3. [His divine power has given us everything we need for life and godliness through our knowledge of him who called us by his own glory and goodness.] I'm not lacking anything right now.

The Bible study that I was supposed to finish on Thursday (I finished that one today, too) had me looking at Hebrews 4:13. [Nothing in all creation is hidden from God's sight.] While I know that contextually it is talking about something different, I also know that God knows every piece of James' inner workings. He has the ability to heal James completely, knowing every little thing that is wrong with his nerves. But if He doesn't, He also promises that His grace is sufficient.

In Community Bible Study, the leadership doesn't give presents to each other. Instead every year we draw names Secret-Santa-style. We pray that God will give us a verse to gift our recipient with. This year, the verse given to me by God and by Kathy was Ecclesiastes 7:14. [When times are good, be happy; but when times are bad, consider: God has made the one as well as the other. Therefore, a man cannot discover anything about his future.] This is such a fitting verse as we look out toward an uncertain future. God holds all of this in His hand; good and bad we can depend on the only One who knows the future.

He has met my personal needs. On Friday there was one worry that I had. I was unable to look up my schedule for tomorrow and I was afraid I was going to have to choose one daughter over the other. The previous Saturday was the first day of the Upward basketball season. RoseMary had a 9:30 game in gym 2, while Trinity had a 10:00 game in gym 1. Two kids/two parents; no problem.

My mother's heart was worried that last Saturday wouldn't be so easy. James couldn't go. I didn't know whether I should watch Trinity play, since I hadn't seen her play before or whether I should watch RoseMary cheer since I have made a commitment to be her assistant coach. I went through many different scenarios, but I couldn't come up with a solution I liked.

It was late when we came home on Friday night. I was pulled many different directions: preparing the kids for bed and laying out what they needed for the next day, unpacking the I.V. products the home health service had delivered to our door, trying to sort through the seemingly endless list of James' new medications... Finally, I was able to examine what the next day would hold. God had worked everything out in advance. RoseMary's squad was cheering for Trinity's team. God gives good gifts.

One of the greatest gifts He has given us has been a remission of greater than seven and a half years. More than 90% have their second attack in less than five years, but because God held back the disease we now have Trinity and Katelynn in our lives. All three kids have been weaned and potty-trained, giving me the opportunity to use my resources wherever they are needed.

Finally, James and I have discovered that we are capable of much more than we ever would have dreamed. On the one hand we were thrown into the deep end of the pool. On the other hand the future may (or may not) hold a lot of days of I.V.s and catheters, blindness and pain. Yet God truly does give His people strength. I thank God for modern medicine, but I know that my trust doesn't rest there. Those who live in the shelter of the Most High God will find rest in the shadow of the Almighty. We have found our rest.

Posting this here in case James is on but Elisabeth isn't... E - I sent you an email back that I could use a response on before I finish that .

That said...

You guys are still in my prayers.

God is so good isn't He? When we were going through everything last year with DS followed by DH, it never ceased to amaze me the little things that He helped take care of on my behalf. Like when I was at the end of my rope and ready to pull over to the side of the road and just cry because all four kids were crying or fighting or whatever, and suddenly silence would come over the van [except for the pouring rain]. And then I'd get to church wondering how I was going to get four kids and me in without all of us getting drenched and the rain would stop as we pulled into the parking lot and start again before I had them all in Sunday School. And through it all, he was taking care of both my men besides knowing when I just couldn't take any more.

I completely relate to the date thing and I'm glad that even if it wasn't a real 'date', you got to spend some good time together.

Carol

Elisabeth, that is one awesome testimony.

Praise God!

I'm so glad that through His grace, you can see so many beautiful positives in what is/has been a scary and difficult situation.

I'll keep praying for you and your family.


Corrina

James & Elizabeth,

I wish you all all the best. You are on my prayers as well as your children.

Elizabeth, I can't tell you how moved I was with your testimony. Sometimes, God does throw us tests in life and their purposes we don't understand at first, but rest assured there is at least one good thing to come out of it.

You both have been really so strong and positive about it that it makes me feel silly for whining about silly little things that happen in my life or the things I take for granted.

Staying healthy is the goal, yet you have achieved a lot more in the process.

May God pour his blessings upon your family.

MDL.

The only time I’ve ever been catherized was when I was under anesthesia and it came out before I was awake, so I don’t personally know how much ‘fun’ you are having. But I’ve put enough catheters in to know that they are not pleasant for the patient.


Oh, gee, what fun. But take heart in knowing that lots of people have to cath themselves.

Seeing as how you are pretty smart, I’m sure you will do just fine.

Grrr.... Yes. There needs to be major reform in the insurance industry. I worked in that industry for about 10 years and went from agreeing with a lot of what they did (like denying a 5 day stay in the hospital when all the patient had done was a proctoscopy [very minor procedure] - but that did NOT affect any money the patient had to put out) to thinking the business had lost touch with reality (like saying a woman having a hysterectomy could go home the same day). The last thing I did concerning insurance stuff was doing appeals for a hospital to all those insurance companies that denied payment. I found that they often denied payment for mammograms, MRI’s (with patient complaints of, for example, numbness), etc. Sometimes the insurance companies would demand a CT scan prior to paying for a MRI. That’s just stupid because the insurance company ends up having to pay a much bigger bill. Insurance companies are holding on for dear life because they see the future which will some sort of socialized medicine (which also has it’s problems).

BUT, again, take heart. Being at home means you are in a ‘cleaner’ environment (at least that’s true for most people) because hospitals are now known (perhaps in ‘inner circles’) as the worst place to get better. They are raging with staphylococcus aureus, a bug that developed (mutated) in hospitals. Staph aureus was resistant against many antibiotics. And as new antibiotics developed that will work against staph aures, staph aureus mutated further into things like the deadly methicillin-resistant staph aureus (MRSA) which is one of the ‘super’ bugs now out there. There are others such at Vancomycin resistant staph aureus (VRSA) and Vancomycin Resistant Entercoccus (VRE).

Part of this also occurs because antibiotics are often given for things caused by a virus - like the common cold. Antibiotics do not work against viruses and taking them for a virus can make a person resistant to antibiotics that they may later really need.

Okay, so I’ll quit ‘preaching’. James, I’m still praying for you, Elisabeth, RoseMary, Trinity, and Katelynn.


Keep at it and you’ll be better than the nurses! (Seriously, this is true....)

Yeah! Imagine the color ‘almost orange’ doing a little dance.

Everything you said, Elisabeth, was beautiful. Someone recently told me to try to find blessings in everything, and you have just reminded me of how important that is.

And wasn’t that one of the best gifts?

I wholeheartedly agree.

You have my continued prayers, James.

On a more material front, I was looking up this problem and found some interesting articles. I'm sure you have researched this a lot more thoroughly than I have, but this was one that I found that made me feel somewhat hopeful.

http://wiseyoung.wordpress.com/2008/12/18/devics-syndrome-close-to-a-cure/

Nan

Wow, thanks, Nan!

That helped a lot today.

Today was was a pretty bad day, pain wise. On Mayo Clinic Scale it was about 7.5.
See http://www.tipna.org/info/documents/ComparativePainScale.htm

I felt like I was trapped by the pain and couldn't get away from it. I finally went for a walk. It didn't get rid of the pain, but I was doing something besides pacing the house.

I am feeling better now, but it was a rough two hours or so.

Once the pain subsided a bit, I called the doctor and got the nurse. She said that she would put a message in that the doctor would see first thing in the morning, (along with all the other messages... I know how it works, and I am ok with that.

I really appreciate all the things you guys are praying and saying. It lifts my spirit to know that I have your support as well as all the people that I actually have living near me as well.

Online friends are not to be dismissed. They are important too.

James

James, I'm so sorry to hear that you have been in such pain. I hope your doctor will be able to help tomorrow. You've had so much to deal with over the last two years. I'll keep hoping for you.

carol

Knowing how it works still doesn't help much when you are in pain.


No they should not. I'm much closer to some online friends than real life friends.


All of you are still in my prayers. I've been thinking a lot about you James, and every time I do, I say a prayer. I even mentioned you to my mom and she has been praying for you, too.


Nancy

Thanks Nancy.

Have you any information on Myelin regeneration?

I know that Myelin does repair itself, slowly. The fact that the color my eyes could see were near normal by the end of the seven years proved that.

However, I was just doing some searches and there is some much that is hype and product placement.

I know that the some of the following is good, but is there other stuff as well?

Coenzyme Q10
Methylsulfonyl-methane (MSM)
Gama-linolenic Acid (GLA)
Omega-3 essetential Fatty acids
Garlic(Source of Sulfur)
Vit B Complexes
Choline & Inositol(Stimulates the Central Nervous System and protects the Myelin sheaths)
L-glycine
and
Glutathione

EDIT AT 09:42am

I just found out that one of the items I need to get within the next 24 hours, needs a prescription. They didn’t tell me that at the hospital. I asked what I would need to do to get the item and they said “go to a medical wholesaler.” They said nothing about a prescription! I think that that little detail is important for a patient to know!

James

From Elisabeth, since she is so good with words anyway....

James and I just got back from the neurologist's appointment. Unfortunately, we received the diagnosis we didn't want to get. James tested negative for both MS and for NMO. That means he's been diagnosed with an undefined autoimmune illness. On a practical basis that means that they don't know how to treat him. The drugs for MS treat weird T-Cells and the drugs for NMO treat weird b-cells. The doctor flipped a mental coin and chose to treat him in an MS-like manner for two months. After that he will go through all of the same diagnostic tests (without that fun lumbar puncture). If his condition either isn't improving or is getting worse they'll pick a different family of drugs to treat him with.

On Monday we're going back to the doctor so that James can learn how to give himself the appropriate shots.

By the way, he is now able to see red lights so he may be driving again. That means that all of his abilities have come back to the appropriate levels except for the one.

He's also trying a new pain medication. Almost all of the nerve pain is gone, so he's no longer taking the neurontin. However, he's still in a lot of pain. The latest theory is that his organs are spasming to cause the pain, so the new drug will address that. Yesterday and today his pain was moderate for most of the day. Then, within a five minute period of time, it shot up to the point that he was panting, unable to speak because he couldn't get his thoughts together and unable to make decisions for himself. Yesterday I wasn't home so he only ate half of a lunch because he couldn't figure out what goes with the sandwich that the girls had made for him despite the fact that the fridge was filled with options. He stayed at that level of pain for a few hours and then it went away as inexplicably as it came. It's obvious that he does better when I'm here to give him options on managing pain so I'm not going to leave for the whole day like that for awhile.

Thanks so much for your prayers.


Elisabeth

James, Elisabeth, I'm so very sorry y'all are going through all of this. Man is born to trouble just as sparks fly upward (a mangling of Ecclesiastes). I know that doesn't really help, but try to remember that you aren't going through this trial in a vacuum. There are other people around you who are supporting you. And - best of all - there is a Friend who will stick closer to both of you than a brother. He won't mind if you lean on Him.

Just remember, if it were easy, anybody could do it. And it wouldn't be a trial, it would be a breeze.

True enough, Terry.

They are going to start me on the syringe form of Avonex on Monday.

I keep telling myself, 52 times insteads of 365...

Hugs to both of you.

And prayers of course.

Not sure what we might be able to do, but if there's anything, let us know .

Carol

James,

I've been away from the boards for a while now and I was deeply saddened to come across this thread. I wish you and Elisabeth and your family all the best. You're all in my thoughts and prayers.

Please keep us posted as you can.

Sue

Hang in there, James. The last attack was in 2001. Once you get it under control, the next one might not be for years, or, if you take good care of yourself, and if God wills, never. Medical science is advancing all the time, and auto-immune diseases aren't the mystery they once were.

You're in my prayers.

Nan

From what you have said, you know more about than me. But now I need to do some research myself...


Ow, ow, ow, ow, ow....


Is the neurologist checking to see if something else is also going on when he is having this severe pain?


Absolutely. I don’t know what I’d do without him.


Have the two of you considered the Mayo Clinic or the Cleveland Clinic in that they may be able to come up with an exact diagnosis?


I continue to keep you in my prayers.

Just an update since it's been awhile.

James is down to his normal everyday pain levels.

It's very clear that he heals in his sleep. Every morning he wakes up and he can't see a thing. Then he puts his glasses on and realizes how much more he can see from the day before. His sense of smell and balance are completely back. The numbness is completely gone from his legs (although with today's cold weather he was wishing that his feet were still a little numb). The tightness across his chest and the pain in the skin of his back, abdomen and chest were the first symptoms to normalize.

Today's appointment was a complete waste of time. By the time the doctor saw us on Friday, his office was closed. Normally his staff does a lot of the details that Dr. Black needed to do for us. He asked us to return today so that James could learn how to give himself his own injections. He has been dreading it, knowing that intra-muscular shots are deep. When we got to the office we found out that the office staff doesn't teach anyone how to give their own shots. Instead it's the home health care staff that does the educating at a home visit. The only thing that we lacked was a form that needed to be filled out, so I filled in name, date, address, and phone number and went home.

The drug manufacturer is the one that sets up the home health appointments in this case. They called James to tell him that, while Blue Cross/Blue Shield normally does cover the drug, they still aren't sure which method of delivery our particular plan prefers. If they allow it to be purchased from a drug store we can start injections tomorrow. If it needs to be purchased directly from the manufacturer then it will take at least two or three days--so the dread is prolonged. The rep also mentioned that the injections hurt like heck. Thanks, so much.

Then we got the run-around at the durable medical equipment pharmacy. We were told when we went in on Saturday that we needed to wait until Monday so that the woman who deals with insurance companies could properly bill for it. Apparently the doctor filled out the prescription wrong because he didn't mention one detail and the lady was very upset with the man who let us purchase enough to get us through the weekend without proper paperwork. I have the feeling that heads will roll over that "huge" gaffe. Anyway we ended up going home $100 poorer with nothing to show for it for the next three or four days until our order arrives. Our primary form of exercise these days is doing the run-around.

Our current goal is to refine the drug cocktail James is taking. He's been off of the neurontin since Friday's visit--the only nerve pain he gets is from the pin-prick tests they give him. We never thought that the Oxybutinin was working, so with the doctors permission, he quit taking that yesterday. He'll probably quit taking the anti-spasmodic tomorrow, since we don't think that makes any difference either. There's another drug that we dropped that we added back into the mix. In a few days we're hoping that he will be down to only three or four drugs, plus OTC painkillers and the shots. He will be taking a ton of vitamins and supplements, though, for at least the next three months.

Hope that wasn't too much information for you. With all of the details that we have to manage I find that I review the schedule over and again. Normally, once I write things down I quit worrying about missing something important, but we have nine times every day that we take a break to do something for James' illness so even writing it down doesn't seem like enough.


Anyway, thanks for all of your prayers and support.


Elisabeth
PS Nancy, you might want to check out this website for your research: http://www.lef.org/protocols/neurological/multiple_sclerosis_01.htm Also, one of our favorite books is the Nutritional Guide to Natural Healing.

Oh, and one more thing, Dr. Black has been giving us excellent care--he's just not a good nurse or secretary. We really are in good hands, even if he can't give us a name for the illness.

Geez, that sounds so frustrating to be given the runaround again and again. Grrrr. I hope that everything gets settled soon and that the worry over the injections is worse than the actual event.

Keep your chin up, James (and Elisabeth!). You guys are thought of and loved from all corners of the world.

Perhaps it would be easier to have someone else give the injection. I consider myself somewhat of an expert at intra-muscular injections (I’d hope so since I’m a nurse.), but I don’t think I could give myself an ‘IM’. An injection that goes into the fat - a subcutaneous injection - yes, I can handle that and have done it in front of patients to show them it’s possible. Do you have a nurse friend at church that could give the injections. Can you do this Elisabeth?


Another reason for James not to do it himself. With an ‘IM’ you’d be more likely to tense up when doing it yourself - thus more pain. If someone else does it, James could close his eyes or look away and then be ‘surprised’, but even if he didn’t look away, I’ve heard most people say they’d rather have someone else give them an ‘IM’.


Try using an accountant ledger (those green things) or make one yourself. It may make things easier.


Thanks, Elisabeth. I guess I’ve become complacent over the years and haven’t done any new research. I think that’s mostly because I wanted to pretend MS would go away.


Anyway, I want both of you to know that you are in all my prayers. And I send you my love.

Sending you both my good wishes and thoughts. I'm so very sorry to hear things are still so frustrating. As for the "shot" issue...I'm not sure if this could help but I avoid them myself whenever possible. Not a fan of going to the doctor or needles, despite the fact that it is my life's career dream to become one, go figure right? I do know that there are such things as topical anasthetic creams which you (I think) can buy or order.

Anyway you just apply some of the cream for whatever time it tells you before the shot and voila, no pain. The cream is just very cold and eventually makes the place on your body where it was rubbed a little tingly feeling like when your foot as gone to sleep. Topicaine is the name of the one I have heard of. A thought.

Hug and take care,
Mona

Well, the topical would be fine if it was a subcutaneous shot that only was on the surface of the skin.

These shots are deep (about an inch plus) into the muscle. Pain is not avoidable....

Glad to hear you're starting to feel better, James. Sorry I didn't post sooner--just found this thread today.

I can only pray for you, that things will get better, James, and that is what I'm doing. Please continue to keep us updated.

Nan

Sorry to give you the absolutely wrong name for the book I use. It's really called Prescription for Nutritional Healing.

As for writing things down, we've been keeping track of meds and other stuff on an Excel spreadsheet. Since there are drugs he's been on for only a few days, so it seems like the best way to manage an ever-changing routine.

What I was talking about though when I said that writing things down didn't help was different. I often find that writing down the myriad of details in life is a stress-reliever for me. I'm happier if I don't have to mentally remember the grocery list, the itinerary for the next field trip, who is bringing what to the next family get-together, and so forth. With James' meds, I didn't get that normal relief when I wrote things down. At first it was like all of our lives rotated around James' illness. Things aren't like that now.

He's successfully off most of his drugs now. There are only two drugs he's on, both labeled "as needed." His injectables arrived today; he'll probably be trained how to use them on Monday. We still haven't decided if I'm giving him the injections or if he is. Honestly, I love him so much that the idea of causing him pain is odius. However, I know that love needs to be strong enough to give him what he needs as well as what he wants. We'll probably decide in the spur of the moment on Monday. Sometimes that's how we operate.

For the most part, we're doing okay. The majority of the pain is gone. What's left is managable. I think the arthritis hurts more than the other stuff. The only symptoms that are left are in the eye itself and in the S6 vertabral area.

On Wednesday James was cleared to drive, although it is in his best interests to limit driving to daylight hours in fair weather. An hour and a half later his laptop crashed, leaving him unable to work from home. Effectively, God booted him from the nest. In hindsight it was clearly time.

Because of the medical privacy laws, no one at James' work outside of his boss knew what was going on. Yesterday wasn't a fun day, since James had to tell the same story repeatedly. Each time he was greeted as if he'd been given the death penalty.

Honestly, life isn't that rough for us. Our medical expenses will only be about $2200 more than they we spent last year. At the risk of sounding rude, that's chump change compared to what other chronically ill people sometimes pay. He has a solid job with an understanding supervisor. He has a solid support network of people who pray for and with him, as well as meeting our physical needs. Bottom line? We're doing fine in spite of this interuption to life.


Elisabeth

Elisabeth, I'm so glad to read your last post. I understand about having to repeat the story over and over again, and because us lay people don't have the training or the experience to understand what James has been going through, it scares us.

And I understand about the "chump change" too. My wife's recent pacemaker operation (I still call it her "upgrade") was billed out at over $100,000 to the insurance companies. We've since found out that the hospital and doctors charge a premium for stuff like this, and then they settle with the insurance company for an amount one-half to one-third the billed amount to make the insurance company look good (because they saved the patient so much money, you see, and they saved their stockholders so much money too). We've had to pay a smidgen of that ourselves, but wow! Nothing like the amount they originally asked for.

And I'm so very glad that James has improved so much so quickly. I know it doesn't seem like it to y'all, but from a doctor's viewpoint it is pretty quick. And I rejoice with you that you two are bound together so well. The divorce rate for couples where one partner or one of the kids has a chronic, debilitating illness was over eighty percent the last time I checked. So y'all are setting the bar high in that regard also.

I pray that James will be well soon, that his computer will be back in action at full strength quickly, and that his symptoms will fade into the background. Failing that, I pray that you will rely on the One Who never fails, never upbraids, and never leaves. Bless you and your family.

From Elisabeth

James asked me to send out another prayer update today. He was running late for work this morning, but he wanted to keep everybody in the loop.

Yesterday he received his first dose of beta interferon. He still hasn't been trained on giving the injections, but since we had the drug and since he has a nurse on-campus at his work he was able to work things out. The side effects are just as bad as we were told they would be, although there was enough of a delay that he was able to drive home and eat supper before it became painful to move. He was joking last night that the good part was that his head hurt enough that he no longer noticed the pain in his groin. At the moment we are trying to figure out what the best schedule for his weekly flu will be. The good news is that the side effects wore off in about nine hours, so it shouldn't interfere with his work.

We're still seeing signs of improvement, although they are falling along the lines of "somewhat functional" and not to the point of the original "manufacturer's specifications". He would like for there to be more vision out of the corner of his eye and for a little bit more sensation to return to the bottom's of his feet, since he can't serve in the nursery if he doesn't know if he's stepping on people. But James is very pragmatic about limitations, seeing his abilities more than he sees his disabilities.

Our big prayer request at the moment is that God will give the physician's clarity to know whether or not his remission medications are working or whether he is just naturally healing. If the new drug works correctly, it will strengthen the blood/brain barrier (so far his brain has been unaffected) and change the T-cells which have been attacking his myelin sheath from inflammatory cells to anti-inflammatory cells. However, since we don't know whether he has any T-cells attacking his myelin sheath or whether it's related to weird B-cell activity (which I don't understand since my brain got over-full while the doctor was explaining both neurological disorders) or whether it's something completely different, at the moment we have no way of knowing whether or not this drug is doing anything beneficial.

Thank you for all of your prayers. It's as if God has carried us through this on eagle's wings.

James pointed out to a friend that Jesus said that when an illness isn't the result of somebody's sin, it comes into your life for the glory of God. We know that this isn't a lifestyle-related illness, so we are praying that God would be glorified someway, somehow, in all of this mess.


Thanks again for your prayers,


Elisabeth