New article "Rebuilding After the Crash"

[jenbooks]

Jackie, can you get your subclasses tested and find out if you have some kind of immune deficiency? Then you will be eligible for IVIG with medicare (is it medicare? I think that's what SSDI gives you, right?)

Yes I do get IVIG. My protocol is one developed by me that has been partially successful at keeping me from total nincompoomp nonfunctional status LOL, but has not really kept lyme at bay as I'd hoped. OTOH that could also be due to insane amounts of outside stress such as demolition on 2/3 of my huge prewar apt building that went on 3 years and made deafening noise 12 hours a day under and over me and led to 11 various leaks and floods in my home as well as mice invasions...and then the most incompetent dentist of all time fracturing my entire socket leading to excruciating pain for months and infection and a surgery to fix her malfeasance...and heat pipes banging at night since the renovations..and living over an inner city schoolyard...and having a broken toe in the joint that was misdiagnosed for 10 weeks and took months to heal etc etc etc....

But anyway, 'nuff of that. So my protocol is:
1) Meyer's cocktail push in water (I do in sterile water after salt/c for 4 days, I should add to the above as a major stressor on my system that whacked me badly) that is magnesium calcium b5 b6 and vitamin C
2) glutathione chaser (1000 mg)
3) Hyperbaric at home about every 2 weeks now (used to be every 1 week, and at the beginning a few times a week
4) IVIG in small doses every other week
5) Atrium peptides (immunity and comitras)
6) Oramune transfer factor
7) Echinacea purpurea root

It's not enough so I need to try some antifungals or some andrographis. I also want to try a bit of Rich's protocol.

Sorry for the long aside but maybe some of the above info will help you. In any case, you may qualify for IVIG if you have a subclass deficiency.

 

[jackie]

Hi Jody! Thanks for the kind words - and I'm sorry for the "Rant" apololgy. NOT!!!! And I agree with you, it really helps to have a place like this to go to.

I can't believe I spent the better part of 12 years keeping to myself. I'd "lost" most friends, seemed to sort of disappear (most of the time, anyway) from a rather large extended family, due to all the time in the house and quite a bit of it in bed.

It was a revelation to discover this site! I understand that the constant ups and downs that I experience typify the very nature of the virus'...but that doesn't make it any easier to deal with.

I feel a little bit sorry for myself, and a LOT sorrier for my sweet, patient husband (who's always here to cover for me) and the MOST sorry for my mother!

Unfortunately for her, I have been her primary caregiver for over 30 years. She's been disabled with a closed-head brain trauma following a car accident, and living with us all these years.

It does seem ludicrous to think that I'm in charge of her care - but for many of those years I was ok and able to do a good job of caring for her.
As my illness has progressed it has gotten more difficult.

We sleep in the room next to hers so I can check on her during the night, and during the day I get up every hour to make sure she has her meals, meds, knitting, books etc.

I'm so used to it that it all comes so naturally. The difference now is in the QUALITY time I can devote to her.

Although I was dx'd over 12 years ago (and had ME/cfs long before that) she doesn't really comprehend that I'm sick, so she wonders why we don't do more activites together.

For many years I sat with her in the garden watching her plant things, played cards everyday, worked puzzles with her...even sat with her and worked on sewing and knitting, whatever she wanted to do.

Now it's all I can do to keep up with the basics. I'm never more than a few feet away from her (haven't even left her for a vacation/break for 15 yrs.!) I make sure we have "tea time" every afternoon but other than that the days have grown pretty monotonous, I'm afraid.

She REQUIRES constant care but she DESERVES so much richer a life at her age. It doesn't seem fair but it is...what it is.

She is wary of strangers (ie outside caregivers) and will only let me help her. I try hard to at least APPEAR ok so as not to "confuse" her.

The only thing that comes close to this, is the memory of taking care of my kids when they were little...when I had the flu! You can just imagine!

I'd like to get well (and STAY well!) for her - as time, of course, is running out and I've run out of solutions to the problem.

By the way, is this considered a rant or just a whine? Whatever it is...it sure felt good!

Oh, and Jody, I'm going to "teach" you to QUILT....you already know how to knit! (insert chortle here)

And Snez, I'm "working" (I use the term loosely) on a Texas Star pattern...with hundreds of pieces so teeny-tiny they make my eyes cross, all in the comfort of my bed!)

jackie

 

[jackie]

Holy smokes! Jenbooks...what a reply! The horrors you've been up against and yet you've managed to avoid Nincompoompium Nonfunctional status (professional explanations are SUCH a help!)

Your dental problems are really making me nervous - but I still have some questions for you (I hope I can remember what they were).

Are you located in N.Y.? Because to those of us laid-back hippie-types in California, such goings on as you've described are commonplace in the big city! We're scared of N.Y.

Anyway, First: I am truly bowled over by the knowledge of you and all the others (myself excepted) on this site. SERIOUS knowledge, know-how etc. of diseases, protocols, treatments, drugs, supplements etc. - it's all here for the asking!

All I have to do is figure out where to place the questions and I think I'll actually get the right answers!

I could be the poster child for people who have fallen through the cracks in the Health Care System.

I KNOW so little about this life-altering disease in part because I've been TOLD so little by my Health Care "Professionals"!

As far as researching for myself, really looking for information and fighting to get it if necessary, my only excuse is that I was just trying to stay alive and with my other responsibilities there never seemed to be enough energy to go around!

Still not a good enough excuse because I've missed out on so many types of treatments! I admit I have been a Nincompoomp - but no more!

I will study what your protocol is, formulate my questions to you (I'll have many) and prepare to blast my Dr. on my next visit in nov.

The subclass issue is very important, but I'm afraid it still won't get me IVIG (I have Medicare through Disability...but opt for the dreaded HMO through my husbands job).

Too bad as I would have been glad of the opportunity to try it. I know of several people with MS who have used IVIG as well as Interferon AND stem cells with results.

I never broke my toe - but I did have a spiral fracture of my ankle that would travel up my leg...had to sit in a wheelchair for 4 months - I spent most of that time crashing into all the door jambs in my house in fits of rage!

And my husband broke the accessory bone in his foot that no one should have in the first place.

But no toes.

Thanks again for all the valuable info, it's much appreciated! jackie

 

[jenbooks]

I like your word (nincompoompium) better . Maybe one should add on "o's" depending on how bad the day is. So a really bad day you are a nincompooooooooooompium. Yeah that suits.

Definitely this could only have happened in NY (the demolition nightmare that I find it impossible to convey to anybody who wasn't living here--) at the height of the greedy real estate boom. Nobody was looking. Asbestos-laden materials were removed and workers were not even told to wear masks--and they were taken out in riteway bins in our passenger elevators! (Luckily that was before I broke my toe and I could go down the stairs). I can't even describe it as I am over the courtyard which they completely blasted and rebuilt. Then I was also over the locker rooms for the demolition workers and they slammed doors as if they were mad as could be, but in fact they were just in a rush. Still they slammed doors constantly as they ran in and out. And I was under *three* apartments being renovated. I caught every leak and flood within the first hour but it was beyond stressful. Other people who weren't home when they had leaks and floods (because the were gut demolishing 2/3 of the apartments and ripping out pipes and wiring), had their apartments, belongings and floors *ruined*.

The mice invasion was freaky. The mice were disturbed from their homes in the basement and the walls. They started fleeing into our apartments. I got up one night and found a mouse in my kitchen sink. He was terrified and he ran down the drainhole. God knows where he ended up. Even more disgusting although comical in a bizarre way was the morning I went to get my nice organic virgin coconut oil that I use as a moisturizer. Luckily I looked in the open jar in my bathroom before I stuck my hand in. A mouse had thought it smelled good and tried to climb in and eat some and drowned.

Anyway.

I don't see why you can't get IVIG if you get your subclasses tested and their subpar. Can't you get medicare even if you also use hubby's HMO? I have no idea.

IVIG gives you passive immunity. So it's not a temporary treatment. I always respond to tiny amounts of things and I've always wondered if our population would do very well with these tiny amounts. I know Cort interviewed a Korean researcher who used 1 gram of IVIG. I tend to use 2-3 grams.

 

[Snez]

I only just discovered this thread,

Jody, thanks for the blog- I can so relate to all the losses. It hurts so much to think of the time that can never be regained due to our illness. My husband felt he had lost a wife -even 5 minutes of talking used to wipe me out. My relationship with my daughters and not being able to counsel/talk with them as I wanted/needed also grieved me. But it is also true that my gratitude for the things I could do (and was able to do as I started to recover) also increased- just the little things; being able to shower, walking without exhaustion, being able to maintain a conversation etc. I just don't take these things for granted.

Jackie- so sorry that you are in a crash. It is so admirable that you are taking care of your mother despite being so ill yourself. Even though you feel that you aren't able to spend that much time with her, know that out of your sacrificial love that somehow you are contributing to the world being a better place. And your love is reaching her! I smile at the thought of you creating your Texas Star quilt in bed. We will certainly talk more quilt stuff when you are able and, of course, roping in Jody as well My prayers and thoughts are with you.

Snez

 

[Jody]

By the way, is this considered a rant or just a whine? Whatever it is...it sure felt good!

Jackie,

I don't think it's either one. I think it's just ... talking. It's just for some of us chronics it's been so long or so rare to have a chance to talk it out once in awhile, ... we forget.

Oh, and Jody, I'm going to "teach" you to QUILT....you already know how to knit! (insert chortle here)

Oops!

I knew that!

 

[Jody]

I only just discovered this thread,

Jody, thanks for the blog- I can so relate to all the losses. It hurts so much to think of the time that can never be regained due to our illness. My husband felt he had lost a wife -even 5 minutes of talking used to wipe me out. My relationship with my daughters and not being able to counsel/talk with them as I wanted/needed also grieved me. But it is also true that my gratitude for the things I could do (and was able to do as I started to recover) also increased- just the little things; being able to shower, walking without exhaustion, being able to maintain a conversation etc. I just don't take these things for granted.

Snez,

My husband also felt the same way for a long time. Months at a time, then I'd start to make headway only to ... disappear again for more months at a time. And I too feel the kind of gratitude you describe in the simple basic things that for so long were impossible.

Jackie- I smile at the thought of you creating your Texas Star quilt in bed. We will certainly talk more quilt stuff when you are able and, of course, roping in Jody as well My prayers and thoughts are with you.

Snez

Anticipating the being roped in thing.

 

[jackie]

Jenbooks...let's just shorten the darn word to "Poompium" - hard to forget, makes one laugh, easy off the tongue - as in "I'm unable to attend that formal black-tie event as I'm much too Poompium today! - or - "she was plagued by Poompium and forgot to...."(fill in the blank), or - "there he goes...acting all Poompium!" Satisfying word.

I did take your descriptions of the awful conditions you were forced to deal with at your home seriously, though. I can't imagine how you stood it and the toll it must have taken.

I've had to postone (for 4 yrs!) a simple renovation at my house because I just couldn't deal with the chaos I knew would come.

I gave the go-ahead to have our old deck replaced (we have a terrible ongoing problem with termites - they even ate my Lime tree and Hibiscus!) and after 3 or 4 days of the noise, smells etc. of the work crew I became so rattled that one morning I forgot and opened the sliding door leading to.....NOTHING! just air two stories above ground - I caught myself, of course, but half of me was hanging in space for what seemed like an eternity!

The crew finished up rather quickly after that and nothing MAJOR has been done since. I simply can't face it. I recently gave in and called a handyman to fix a slow bathroom drain (thinking that I could handle an hour or two) and what does he do but ram a gigantic snake into the nether regions of the plumbing (for reasons that were never made clear to me!?) breaking bits of it off along the way and requiring me to hire another handyman to fix his mistake who decided to disconnect all of our heating system (before disappearing) requiring me to hire another handyman to reconnect us.

The first man showed up drunk in the middle of the night later that week asking for a ride to a bar - I whacked him on the arm with a curtain rod and set the Pomeranians on him.

It made the hair on the back of my neck stand on end to read about your mouse/mice invasion! I hope your problem is solved in that respect. People always say to get a cat if you suspect mice...but they forget that although a cat may indeed catch the mice it usually prefers to bring them to YOU! Trust me on this!

I would like to hear about your apartment though (I hope the work has been completed). I've always been interested in Architecture - especially relating to certain time periods/eras. And I know NY has GREAT examples. In California it's Spanish, California Craftsmen, California Bungalows, mid-century moderns - each has it's own charm and all interesting to study. So tell me about yours sometime.

As for the IVIG I'm certainly going to ask questions and try to follow up. From my understanding I can't use both Medicare AND my HMO. I have more questions (at a later time) about your use of very small amounts of IVIG - is this done through your Dr? Are you on your own with this? Going to a Clinic?

But if anyone can find a way for me to be tested for subclasses and perhaps recieve treatment it will be my Infectious Disease Specialist. Have my appt in Nov.

My insurance approves very little in the way of tests and using an independent lab costs an outrageous amount of money - as you probably know!

They can run from approx. $500 to well over a thousand for any single test. Some of my blood was used in Genome research (might have been sent to Scotland, not sure) and each slide cost over $500! (THIS I didn't pay for!)

Thanks for the "talk"! jackie

 

[jackie]

Jody - I'm keeping this sort of short (not my usual - my motto is why say what you mean in 5 sentences when you can drag it out to 20 paragraphs, right?) as I'm posting on borrowed time today! I feel like I've gotten away with something!

I usually have a mini-crash about 36-48 hrs. after a doctor appointment! So by later tonight I'll be thrashed and tomorrow - toast! (but only for a very few days, I think).

I've already started to photocopy some patterns/instructions for you and it would help if you could tell me your favorite colors (for some fabric from my stash).

You know, warm tones, earthy, primary colors, brights, pastels, solids, large splashy florals, geometrics, victorian or shabby-chic tiny florals for example. Just give me a direction to go in.

I'll take my time gathering things up but we'll eventually get you started on your way to Quiltdom!

'night, jackie

 

[Jody]

Jackie,

I like alot of different colours and styles but I can narrow it down some, I think.

I'm not into big splashy florals or geometrics. Love victorian and shabby-chic tiny florals though.

Colours? Not into orange. Funny, that's the only colour I'm really not much on. ;-)

That doesn't narrow things down very much, does it.

Let me know if you'd like me to try to get more specific.

Thanks for this.

No rush, though. We want you to feel better first, yes?

 

[jackie]

Snez...Thank you for your sweet thoughts (and your prayers, too!).

I have a little story about being a caregiver to my father that I want to tell you - but I'm fading fast and it's a LONG, little story! It will have to wait for another day.

Maybe I can send you the texas star pattern - I can tell that you're an experienced quilter and would appreciate this one.

It's from the early 1940's probably originally made as a "feed-sack" quilt and VERY unique in the way it's put together.

It's really appealing and so much fun to work on. The "stars" look more like flower petals (six petals to a star) and each one has a hexagon as its center. Its put together by using unbleached muslin diamonds to join the stars.

The entire perimeter of the quilt has the star points sticking up/out with a narrow binding around them, rather than straight edges - very cute and very vintage!

Typically I think that EACH star was made using a different fabric - so if you choose to make it this way it requires a pretty formidable stash of material. An 80x88" quilt needs about 346 stars!

If you don't already have this pattern and are interested I'll be glad to mail it to you when I'm able....it's a lot of work, but you CAN use scraps and it certainly makes the time fly!

Take care, jackie

 

[jackie]

Jody...You're in luck! Have some GREAT mini-florals (very victorian - you know, little "posies").

As well as some tiny florals that are reproduction depression-era fabrics in my stash so you'll have some fun scraps to play with and practice on!

I'm leaning toward some faded primary colors (soft reds, soft blues and delicate yellows and greens with muslin for contrast)

If that is TOO "soft" for you let me know. We can always go for minis using black prints, tans, reds and navys.

I'll sleep on it...like right now!

j

 

[Jody]

Jackie

What you suggested sounds wonderful.

I like your faded primary colours. They sound perfect.

 

[Snez]

Yes please Jackie, the Texas Star pattern is one I haven't got, though I have seen it somewhere. Whenever you are able, just send it on down- much appreciated. Are you english paper piecing this pattern, I seem to recall that it can be done this way?

What I would love to do (at some later date) is to send you a completed star or two or three to add to your quilt. Isn't this a lovely way to stay connected, share our stories and lives? What do you think?

I've only been seriously quilting the last 3 years so I'm probably not as experienced as you are. Also, I've yet to complete a whole quilt (apart from a wall hanging and cushions). I've almost completed my second handpieced quilt top but not actually "quilted" properly yet. That is a whole new adventure waiting for me.

Jody, it appears that you have been truly roped in now- with a delightful fabric rope nonetheless.

Snez

 

[Jody]

Snez,

I promise I won't struggle to break free.

 

[jackie]

Hi guys! Jody - This is pretty cool...I'm enthusiastic again about something!

I've put together your fabrics and I think you're going to be happy with them. There are sixteen different prints (I thought you'd have room to play if I worked in multiples of four - a bit easier when you're learning).

Four faded reds (more of a brick/apple red rather than a, say, raspberry red, graded from dark to light shades.

Four really pretty blues (probably comparable to the tones of denim blues).

Four yelows leaning toward soft mustard/yellow ochre.

And four shades of green (these are kind of an olivey green rather than greens with blue or yellow undertones).

And a bunch of muslin fabric for contrast - imagine a checkerboard look - a square of plain muslin then one of the prints and so forth. Are you confused yet?

They are delicate prints, some tone on tone - perfect if you want an antique, vintage or I guess "rustic" look.

They are absolutely "FALL" colors! This way they'll lend themselves to uncomplicated patterns - in fact, they'd be perfect for simple "4-patch" blocks or even little pinwheels.

Pinwheels look showy and impressive but are actually quite easy and really fun to make.

It's going to take a little more time to choose which pages of written instructions to print out of my books for you - so be patient!

As I said I'll also send a few blocks that I've already sewn together so you can SEE how to sew them.

The biggest question is how you intend to work. Do you plan on using a sewing machine or piece/sew by hand?

I no longer use a machine at all as I can't sit at it long enough.

Hand sewing I can do just fine in bed by resting my arms on pillows.

Besides it's becoming truly a lost art and and I get a big kick out of looking at the finished quilt and knowing that I sewed all those thousands of perfect tiny stitches!

I can't remember if I mentioned this before, but I've machine washed/dryed my quilts dozens of times and never had a seam pull apart - hand sewing produces incredibly tough seams.

The "quilting" part comes a bit later. After you've pieced the quilt top, and layered/sandwiched it with the batting and the backing THEN you can either "tie" your quilt (I do this a lot with colored yarns because I like the old fashioned look of it).

Or learn to actually quilt/stitch through all the layers either in a decorative pattern or plain even stitches along the seam lines of the quilt top.

Last questions - would you prefer to work smaller or larger? I mean, with cut pieces maybe 2" square or with larger ones?

Let me know. tks jackie (oops! just looked at the clock! - am LATE feeding the Poms so I'll respond to Snez in a few!)

 

[Dreambirdie]

taking it slow

Hi Jody--

I just read your piece. Thank you. So well described.

I have been noticing, too, how essential it is for me, when I DO have energy, to be aware of how I am using it in every moment... how I'm sitting, how I'm breathing, how I'm thinking, and what I'm saying to myself. It can be very EYE opening for sure!

I can blow a lot of energy just by being tense about something that I might not be completely aware of, or by pushing myself to think when I just don't WANT to think, or by anticipating something in the future that I'm fretting about whether I'll be able to do, or not/not/not.

Holy cow, the mind can be such a circus.

I have been learning how to pull in the reins... I actually will say WHOA to myself out loud sometimes just to make sure I get it. And sometimes I don't. But that's okay, because at least I am moving in the right direction, which is deeper into myself.

 

[Jody]

dreambirdie,

I am also trying to be more tuned in, and just sitting here at my computer, I will realize ... I am not breathing. Again.

And it will be while playing solitaire or something innocuous as that. So it's not from what I'm working on, not stress ... just, sometimes apparently I am not breathing. And I should be. So, I do it consciously for a bit, and check in again with myself later ... do it again. Nice, slow, relaxed breaths. They feel good. Better than a few minutes before that ...

 

[Jody]

Hi guys! Jody - This is pretty cool...I'm enthusiastic again about something!

Great. I'm pretty enthusiastic about it too.

They are delicate prints, some tone on tone - perfect if you want an antique, vintage or I guess "rustic" look.

Sounds beautiful. Really beautiful.

It's going to take a little more time to choose which pages of written instructions to print out of my books for you - so be patient!

As I said I'll also send a few blocks that I've already sewn together so you can SEE how to sew them.

The biggest question is how you intend to work. Do you plan on using a sewing machine or piece/sew by hand?

I can be patient. You take your time and ... you know, pace yourself.

Thanks for sending the demo pieces as they are sewn together. That will help me.

I don't have a sewing machine, so it will be by hand.

Last questions - would you prefer to work smaller or larger? I mean, with cut pieces maybe 2" square or with larger ones?

I don't know Jackie. My guess is, with the smaller ones, it will take more time and more stitching to piece them together? On the other hand, ... my first response was to go with the smaller ones, so I must like the idea of them better.

On the OTHER hand, this is all new to me and I have NO idea about anything much.

What do you suggest?

 

[jackie]

Jody I'm delighted that you're going to be another hand-sewer!

Please remember, unless it really stresses you out to have "stuff" hanging around unfinished (let me re-phrase - at various stages) this can be one excuse for slowing down and taking your time!

There's no pressure, no deadlines (and being a former artist I KNOW deadlines), nobody can rush you - you can stop and start ...put it away in a cupboard and drag it out again.

Eventually your work will feel like an old friend you're having a reunion with! This sounds so corny..but it's true for me.

I have at least 4 quilts in progress, and this spans several years time. I have cut pieces (which by the way I've cut using scissors while sitting in bed!) for maybe another 3 quilts.

I view them as my "art" now. The art I did "before" was very complex - the paintings required a lot of stamina, the sculptures required tremendous body strength (especially upper) and the drawings, prints etc. required a dexterity I no longer have.

BUT I still have my eye for color and design so I've turned to fabric as my creative outline for the time being. And it's very important to me to leave something behind.

If you know how to sew (stitiching with a needle and thread) it helps, but everyone can learn to sew a nice, plain straight seam line.

I always mark in 1/4" sewing line on all the edges of the cut pieces. This sounds very time consuming but once again it can be done sitting in bed or on the couch using a ruler/pencil (or a special marker - more on that later).

Tracing a pattern, cutting it out and marking the sewing lines is repetitive, busy work but you can listen to music, meditate or go into a fantasy world.

About the sizes - I think that smaller size pieces are easier to work with, easier to hold and less overwhelming. It obviously takes longer than working with big squares...but that shouldn't concern you at this point.

Of course, you can cut everything using a rotary cutter/cutting board combo (and if I'm feeling ok I do for extra speed and accuracy) but you need to stand or at least sit at a table for leverage.

And it's not necessary - just use scissors and cut through as many layers of fabric as is comfortable on your hands - and doesn't make the material pull and get wonky.

The written instructions I send will cover all of this - step by step.

You may try this and find it's not your thing...on the other hand it may turn out to be JUST the "thing"...and maybe something you can share and pass on to your husband & daughters/sons.

Men make GREAT quilters, weavers and knitters, by the way! jackie