Trying to get into a routine at home

I came home to many wonderful surprises that my husband and kids worked on for me while I was gone. The best surprise was a mini kitchen remodel. Our friends and church family sent so many meals to help that they needed only a fraction of our grocery budget, so they saved that extra money for a surprise for me.

When we moved here 5 years ago, we had to move the cabinet on the side of the stove out to make a 30" wide gap between the upper cabinets for a range hood. It left a 6" gap in the tile. We covered the wall behind the stove once with fake tin ceiling, but it didn't prove to stand the heat of the stovetop, so we have just dealt with the ugliness until now. The kids and Jim thought returning to a fixed up kitchen would encourage me with my new restricted diet--and it has!

They removed all the tile and drywall back to studs, put on plywood, then installed new real metal tin ceiling all the way around under the cabinets and behind the stove except for behind the kitchen sink where they put black and charcoal colored 1" glass tiles.

They replaced the last remaining plastic mini blind with a nice new wide slat white blind in my kitchen window and installed a new faucet and soap pump on the sink. Then, they de-cluttered and hung up a cute mesuring spoon set that my Mom gifted to me. I love it!

This was just one of many great surprises! I'm glad to be home but overwhelmed with trying to fit in all my medicines and treatments and resume our "normal" life here. Our lives are so full and busy. I also feel better and want things that have been neglected to be cleaned and taken care of. So, this week we have been deep cleaning and de-cluttering an area everyday. It feels good to finally have the energy to actually do it. It's been a good 2 years or more going downhill pretty steadily and I'm glad for the gains in my health that have come in just 5 weeks of treatment. I hope I am able to sustain them.

My first infusion at home went well.
Please pray that the added stress of resuming normal life can be balanced with my treatments and that I don't lose the ground I've gained in Oregon. I'll be checking in via telephone appointment with Dr. V soon and going back after the first of the year, sooner if necessary.

Thanks again everyone for the many ways you've helped us.

Today, we heard about Chung and Larry having to battle cancer again after recent clear scans. It surely does make you wonder about the purpose of such suffering? We may never know why, but believers can rest in the truth that all suffering will be wrought for good one day. I'm anxious to see that day. I wish all people lived with that comfort that comes with accepting Jesus as Lord and Savior. It makes everything more bearable. I don't know what cancer is like, but I know the disheartening feeling of starting the battle over again and again. Pray for Chung and Larry for me will you?

"My dear brother, we must not mind a little suffering for Christ's sake. When I am getting through a hedge, if my head and shoulders are safely through, I can bear the pricking of my legs. Let us rejoice in the remembrance that our holy Head has surmounted all His suffering and triumphed over death. Let us follow Him patiently; we shall soon be partakers of His victory."
~Charles Simeon

Last week and today, my last day at the clinic

I had a rough week of treatments last week- both Tues and Thurs ended in horrible nausea and migraines that put me in bed. Tuesday's migraine lasted almost 24 hours. Thurs wasn't as bad, but--ow. Those two days were so bad I was afraid of getting more treatments. I was ready to throw in the towel. Thank God for a new day and renewed strength to go on.

Tuesday was my oldest baby's birthday. 16!! So, Hannah and I enjoyed a pedicure to celebrate. I had a minor migraine that day too which put a damper on things for me, but we had a good time anyway. Cindy got a taste of parenting a tough child as she graciously took Thomas for me while we got our pedicures done. While I was getting hot paraffin wax treatment on my feet, Thomas was keeping Cindy on her toes. :)

Afterward, we all four ate at Pho Van in Beaverton. Portlander's---go eat there.
Awesome food, excellent service, inexpensive and healthy. I don't know who wouldn't love that place. I can't recommend it enough. Order a #50 or #51 and you won't regret it! :) Also, try the banana bread pudding or ginger creme brûlée for dessert. I am going to miss Pho Van!

Today, I got a crash course in all my IV treatments. I learned how to mix my IV's which will save me a ton of $$ at the compounding pharmacy. Doing my own IV's at home saves me $100-150 a pop too. I've spent a fortune at this clinic getting treatments 2-3 days a week, but their prices are reasonable for what they do and they are graciously haggling with insurance for me and getting some of my treatments covered. Maria has had to negotiate every single bill since they have no contract with insurance company. She showed me her notes on one bill today and told me that she called three times for that one alone to argue and finally got them to cover that bill at 69%. Yeah! Her willingness to argue with them when she has nothing to gain by it is a huge blessing to me. This kind of care above and beyond has been par for that clinic and I am so impressed. So, hopefully because of Maria, money should trickle back to me from the insurance to help continue treatment at home and my family really needs that!

I accessed my port myself today. The nurse helping me has been an RN for 40 years and has never seen someone access their own port. She was nervous about the idea of it, but the doctor wanted to give it a shot so that I can continue treatments at home and he trusted in my abilities having done my own picc care with two picc lines. It wouldn't be possible to get these treatments done anywhere else as Dr V doesn't have prescription privileges in Kansas. So, it's important for continuing treatment that I learn to do it myself. I accessed the port with a curious audience of onlookers without any trouble at all. I was amazingly calm and ready to do it. I honestly wasn't sure about it a week ago after the port was placed and today I was thankful for the gift of a steady hand and cool head as I essentially stabbed myself in the chest with a 90 degree bent huber needle and drew out a half bag of my own blood for a blood ozone treatment. A little bit nerve-wracking and gruesome, but amazingly, I wasn't even the slightest bit nervous. We used the access for 3 IV bags today. It worked great! My nurses bragged to every patient and person that came in the clinic about how amazing it was that I did it myself.

I've had more success with a few weeks of treatment here than in years of battling this with antibiotics. I'm not sorry for the treatments I did at home, but this is a more comprehensive plan and has been more successful because of that. I've gained a lot of functionality back in a short time. We have figured out the root of several symptoms and are working to fix the problems. We are still trying new treatments and testing the results with frequent blood work and clinical symptoms to see how I respond. We've only really touched the tip of the iceberg of my health problems, but the few weeks of treatment has resulted in incredible gains for me. This is a marathon and will take a long time to complete. I'll be following up by phone every couple of weeks and will fly back every few months for a week at a time for a face to face. I had lost hope this year that I would ever be well again, so it's nice to have hope restored alongside some quality of life. I cried as I left the clinic today. ;(

I learned last week my Lyme doc at home has left the practice he was working with. This is bad timing for me as well as many others. He hopes to be set up again soon somewhere else but everything is in limbo and I can't rely on him for treatment until he's up and running again. I am glad I have a second Dr now!

Please continue to pray for healing as I'm not well yet, just improved.

Pray for safety of the treatments and management of side effects so far away from Dr V.

Pray that my doctor at home would get set up in his practice soon and that he would be able to help me continue treatments by prescribing the things I need there to reduce the cost and hassle of shipping it all from Oregon.

Pray that insurance will kick in and pay for a good portion of my treatment as this has cost thousands and thousands of dollars and we have paid out of pocket up front for it all. I'm looking at 2-3 more years of treatments and need our money to stretch as far as possible to be able to complete all that needs to be done to regain what has been lost.

Pray for all the many loose ends and details I have to wrap up tomorrow. We fly our Sat early. I have 101 things to do to be ready to go. We also will be traveling home with more medical supplies including tons liquid. We need TSA to let me through again without too much hassle. Pray that we might get a whole row together on the way home and that we can fit all of our things in our bags as well. I am going home with A LOT more than I came with!

I know that's a lot to ask. Thank you all for the many prayers and words of encouragement. I'm so thankful for those who sent random gifts that have helped so much financially as well as the meals that kept my family fed. We appreciate the thoughtfulness of you all more than we can say.

The pictures below: the one with Tom was taken in the airport on the way out a month ago. The coffee one was done 2-3 weeks ago and the other one last week. The difference in my skin tone, premature aging, facial wrinkles and hair is amazing really. The clock has been turned back a little! People are saying how I look too young to have a 16 year old/5 kids again. Those comments had stopped the past two years as I have aged in appearance quickly. It may be hard to see in photos, but Jim is amazed when I send pictures since he doesn't see me everyday and that makes the changes more evident. People will accuse him of robbing the cradle again here pretty soon! :D

I can't wait to go home! Honestly, I don't miss Kansas. I just don't, at all. I do miss my husband and kids and church family....and my bed! It won't be long now...


"He that spared not his own Son, but delivered him up for us all, how shall he not with him also freely give us all things?" (Romans 8:32)

It stands to reason that He who has already done the most difficult, yea, infinitely difficult thing for us out of His great love, will continue to manifest that love to us, especially now that we are of His family. As our text tells us, He will "freely give us all things." With our best interests at heart, He will see that "all things work together for good for those who love the Lord." (Romans 8:28)

"What shall we then say to these things? If God be for us, who can be against us?" (Romans 8:31)

Divinely outfitted...

Did God give you more prosperity before? It was to prepare you for affliction. We should look at all our outward prosperity as a preparation for afflictions. If you had done so, then it would not have been so difficult for you to endure afflictions now. If when you had great wealth, you made use of the mercy of God to prepare you for your afflicted estate, then the change of your estate would not be so grievous. Every Christian should say: 'Have I wealth now? I should prepare for poverty. 'Have I health now?' I should prepare for sickness. 'Have I liberty?' Let me prepare myself for imprisonment.

'How do I know what God may call me to? Have I comfort and peace now in my conscience? Does God shine upon me?' While I have this, let me prepare for God's withdrawing from me. 'Am I delivered from temptations?' Let me prepare now for the time of temptations. If you would do so, the change of your condition would not be so grievous to you.

Know that this is the excellence of Grace in a Christian, to be fitted for any condition; not only to say, if it were 'this' or 'that', but if it were any.

Now, if a sailor has skill he does not say, 'If it were any other wind but this, if the wind blew in any direction but this, I could manage my ship, I could show skill in other directions but not in this.' Would not sailors laugh at such a one? It would be a shame for him to say that he has skill in any other direction but this.

So, it should be a shame for a Christian to say that he has skill in any other affliction but this. A Christian should be able to manage his ship, if the wind blows any way; to guide his soul any way.

~Charles Spurgeon

Tuesday IV

Tuesday, I went in for an ozone IV. I felt really great when I left, so the kids and I went across town to see my sister JK and nephew Ty. The days I only do ozone IV's I feel great. Chelation IV's stir up toxic metals and gives me a toxic headache or migraine. The weather was great and the boys played outside awhile and we soaked up some sun.

Today, I'll try an ozone sauna for the first time. So, I have a shortened day at the clinic. Dr V wanted me to do no other treatments on the sauna day to see if it there is any notable response to it. This is something I can continue at home with an ozone machine if I buy a sauna kit. The intent is detox of the junk we have mobilized with treatments.

Thursday is a big day of many IV's and I will be doing micro-current therapy as a trial as well. I am going to ask more about this, but I think it is similar to my rife frequency machine at home or like a tens machine, only more comprehensive. If so, and if they know of helpful frequencies for me, I can do this at home with my machine. They have a little different method of administering the treatment than just tens pads which is what I have. So, I'm interested in seeing what Dr. V does and how his machine works.

My port pain started decreasing yesterday. Thanks for prayers for that, it ramped up from Fri to Mon and finally started feeling better Tuesday. We haven't accessed it yet partly because of pain and partly because they didn't have any huber needles. So, maybe Thursday accessing the port can be added to the long list of what's going on that day. I have 10 days to learn how to use my port and what treatments to continue at home. We are doing experimental trials of various things. Pray to help us narrow down the most effective treatments and medicines.

Well, my main daily trouble is this diet. I want to give it a fair shot so I am sticking to it, but I'm always hungry and coffee smells torture me. I think I am losing weight everyday so no telling what I'll look like in 10 more days. I have no scale, but I can tell by my clothes those few pounds I put back on before I left have come back
off. I'm using the tightest notch on my smallest belt and will be adding a new hole here soon. Everyone says "I know someone on a gluten free diet and it's doable." If it were only gluten I couldn't eat, I wouldn't complain! Quit telling me that! Also, since when is 'knowing someone on a diet' meaningful in any way to what a diet is like?

Basically, food gives me little to no enjoyment anymore. It's just a hassle to eat and I'm always hungry. Yesterday, I was thinking: would I rather be in pain from allergen foods or always hungry because I can't eat anything? (I have drugs for the first!) I'm not sure this is better. I wake up in the middle of the night now not because of body pain, but because of hunger--and I don't want a salad. I haven't given up, but the novelty has most definitely worn off. I think if I could simply have my coffee, I would not whine. I can't have wine either. Ok pity party over...Sigh.

It's amazing how spoiled we get isn't it? I'm sure many would love what I have to eat. I need to remember that, then be glad for rice and salad!

Port hurts!

I didn't think this thing would hurt so bad. I'm sleeping with ice on it and icing it off and on all day too. (People who know me know I wouldn't put ice on myself unless I was desperate.) I am glad it isn't supposed to be accessed until Tuesday because nobody is touching it like this! Hopefully, it's better by then.

I felt like a wimp today when I took off the bandage because I thought it would look way more impressive and gruesome. It was disappointing. I wanted to be sure it wasn't infected because it hurts worse today than ever. I think it's ok- just irritated from using my left arm today...

Once again, no pain, no gain!

Below: Tom dancing at church today, Tom at the Asian market

Port in, no problems

Port was put in this afternoon without any problems. My left arm, shoulder, chest and neck hurts, but that's normal. We forgot to stop and get the pain prescription for Vicoden, so hopefully what I have here works well enough that I can sleep. Today was the best experience with anesthesia I've ever had, which is surprising, because it was a general with intubation and everything. I woke up easily, no nausea, and I was lucid enough right away to go do some shopping at TJ's and get some things I'm allowed to eat for next couple of days. This new diet is going to take some adjustment, but I'm ready for results, so I'm not fooling around!

I am so thankful for Cindy driving me to and from appts and giving me permission to throw up in her car. :) Also, Bill and Kelsey are cooking for my kids and I know it can't be easy on their family to have 3 extras around for weeks. <3 Thank you also to everyone that has helped my family left at home. It's less worry for me that they aren't hungry and struggling to get by without me.

Please keep praying for my friend Dawn who lost her baby to a stillbirth, Hannah Grace, just 2 week ago and is still hospitalized herself with problems similar to eclampsia. She's really sick and is having terrible headaches for days on end. It may be a spinal tap headache but may be related to BP or something else. She keeps having very high BP episodes. I can't imagine dealing with this on top of the grief of losing her baby. Her baby was 35.5 weeks and looked perfectly healthy. They had been so relieved she was out of the woods of miscarriage so this had to be quite a blow. Also, Dawn's poor husband and kids must be so worried they might lose Dawn! She just got out of the ICU but she's still very sick.

Thanks everyone. I'm "home" this weekend and treatment resumes Tuesday.

Below is my niece, Layla, Tom's Oregon "Baby."

Port surgery tomorrow

Dr M fit me in his schedule tomorrow. I arrive at the hospital at 1pm. He said surgery will probably will be around 3pm. It's done under anesthesia and they keep you a couple hours post surgery. My sister or Mom will take me.

My main concern is I've been having low blood sugar issues (nausea, headache) and they require no food or drink after midnight tonight but surgery isn't it'll 3pm tomorrow. It's a long time for me.

Risks of the surgery are lung puncture, vein problems, infection anesthesia problems.

Thanks for praying.

Consult

Just got a last minute consult with the vascular surgeon. Pray it goes well. (I need the port in before I leave and insurance coverage.) It's at Providence where I already had problems with the infectious disease doctor telling me I am crazy...

Maybe I am, but not in the way he suggested! :)

Food Allergy Test and Heavy Metals Tests Are Back

There goes everything I love:

NO Tomatoes- spaghetti, salsa, tomato salad, BLT, tomato basil pizza, even ketchup!

NO Nuts

NO Ice cream- sniffle

NO Chocolate- this is just mean

NO COFFEE- this is traumatic

NO Cheese- *waaaa*

NO Cottage cheese

NIX All dairy

NIX All leavened bread- *cry*

NO Wheat or rye

NO Pineapple- goodbye fresh pineapple

NO Bananas- bye bye TJ's dried bananas

NO Lemons- bye lemon water, lemon bars, cookies, lemon brownies...

NO Eggs- this is why French toast made me wheeze at the beach- egg/bread double allergen whammy

NO Yogurt-bye bye delicious Frozen yogurt, Greek yogurt

NO black pepper?! What a cruel blow

This isn't even all....what's left to eat?

If anyone looks at the heavy metals or food allergy tests and has any suggestions let me know. I hope to get a consult on them today.

Tuesday

Today, I felt better than any other day here. Treatments went well. Neural therapy was still painful, but easier to tolerate. I was less forgetful, more clear headed, and had more energy than I can remember for a long time. I had a long day of treatments, went out to dinner, then stopped at the store and didn't get home until 9pm. It's 10:30 and I'm still not exhausted. (Like a normal 36 year old!) If today was just an average day for me, I'd never complain again.

Pray that I might get my port placed so I can continue ozone treatments at home. Getting the port away from home is proving to be a challenge. I need it before I go to get training on how to administer treatments.

No treatments tomorrow. Thursday is the next one.

Recess is over!

Treatments last Thursday were IV's, nothing unusual to remark about. Then, Fri-Mon I was "off." I felt well enough to drive Hannah and Tom to Rockaway for the weekend. We were glad for a break.

Some concerned people discouraged me from taking the 2 hour drive to the beach by myself. Then I realized, I drive at least 1 hour to my doctor at home in Kansas and then turn around and come right back. That's 2+ hours and I do it in worse condition than I was Friday. So, I decided to go. I have felt significantly better after removing my picc line too.

We stayed in my friend's beach house. It was a nice visit with my friend and her family and it gave the kids a few days to play on the beach. The weather was beautiful. We clammed, harvested mussels, played board games and shopped in my favorite store still open 20 years later, Trash and Treasure. I even bought some trrrrrrrrreasure! (You thought I was going to say trash!)

I'll post some pics below of my favorite finds which are antique carved wood bookends and an old Bible. The Bible is like new, not written in, with indent tab pages, a dictionary and commentary inside, illustrations and art, and many other cool resources. It is still tightly leather bound, no bent pages, etc. I don't really have my own Bible. I just use one of the many we have. When I got this Bible home, I found inside a silk bookmark embroidered with pink thread "GN." My initials are NG.

I also got a handmade antique bone handle knife steel, a cool antique galvanized metal scoop, an embroidered little doily I liked and an old school type heavy pencil sharpener for the kids (tired of China destroying all of our pencils). The Bible and bookends are the favorites though.

The drive up was fine. The drive back was ok except when I was suddenly overwhelmed with the ever familiar crushing fatigue. I was seeing things as I drove. All the "wake up" tricks didn't work. My brain was checking out and would startle at the sound of rumble strips. This reminds me of narcolepsy because my eyes are open but my brain shuts off and my body even does those "going to sleep now" twitches like it is going to sleep without me. So, I pulled over at a state park and I slept in the car in the Tillamook National Forest for 30-40 mins to recharge. Tom played iPad and Hannah napped to. Good thing we weren't on any time schedule. My kids have become highly adaptable with me being sick. They didn't even say a word about it.

I've been dreading today's treatment since Thursday. More neural therapy, then IV's. I don't know if I can take the neural therapy if it's in my stomach again. Needles, even 40-50 of them, are fine with me- just not in my stomach! These aren't acupuncture needles folks- they are big fat ones because they have to draw up procaine, (like lidocaine or novocaine) which is thick and viscous and requires a nice large sized needle. Ow. I am not a wimp about needles, but this one made me cry about 25 needles in. I'm trying to steel my nerves now.....

Praise: This week should be my worse most debilitated week of the month. Usually the week before and during my monthly cycle, I am at my very worst. In the middle of that time, I'm sometimes in bed 15-18 hours total each day. It has been this way and getting worse for so long, it's predictable like clockwork. I honestly don't feel wonderful now, but my low has raised up quite a bit. My pain level is very high like it normally is during this time, but I have more energy and I am out of bed and sleep actually refreshes me. That's something to be thankful for! Usually the overwhelming fatigue like I had on the drive home yesterday happens off and on all day and I won't wake up for 3-5 hours when I nap. Even after all that sleep, I won't feel refreshed at all. Those 30-40 minutes refreshed me enough to safely drive back like it should have. This is a big improvement for me.

Pray for pain management today during my treatment. I have to give this enough tries to see if it helps my nervous system. The ultimate goal with this is "re-setting" damaged nerves that are causing chronic pain and stimulating the autonomic nervous system to repair/reset. Our bodies are electrical and can short circuit with pain, disease and injury and create unhealthy/abnormal electrical patterns. I suspect this is true because I've been known to make electrical things malfunction when I'm nearby. I burn through watch batteries in 6 weeks. When we used to use a modem for our internet, it would malfunction and crash when I came near it, over and over again. I had to stand back or someone would lose their internet connection. Jim probably remembers all the weird things better than me. We made the connection ages ago that there was something electrically "off" about me. Jim would say it is my magnetic personality or my electrifying beauty. Ha! Anyway, anesthetic is injected into nerves to numb the nerve for 30 minutes. When it recovers, often it resets to normal instead of the odd pattern it had began firing in as a result of some part of this illness. I have a lot of nervous system problems- tremors, twitching, jerking, pain, heart rhythm irregularities, blood pressure and pulse irregularities, etc, etc... Since nerves are responsible for the function of everything, the symptom relief possibilities are endless. This won't cure me, but it can help with relief, possibly reduce pain medication needs and contribute to healing. No pain no gain with this one though...

Thanks everyone.

Isaiah 40:28-29
Have you not known? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He does not faint or grow weary; his understanding is unsearchable. He gives power to the faint, and to him who has no might he increases strength.