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Archive for October, 2009

Waiting for healing to work: “I am waiting…waiting on you Lord; I am peaceful, I’m waiting on you Lord…it’s not easy, but faithfully I will wait. I will move ahead bold & confident, taking every step in Obedience, I will serve you while I’m waiting, I will praise you while I’m waiting, I will worship while I’m waiting…I will not fail, I’m running the race even as I wait…” I am healing, even as I wait…

I have really loved being off of antibiotics for 2 weeks. I feel clearer in my thinking, but I’m still so tired, have no stamina, feel like I’m always out of breath! Dr J said it’s due to bloating & swollen internal organs pressing on my lungs, but Tim made a good point also: since I’m up to 10 mg of Coumadin every day (quite high dose) plus Nattokinnase, my thin watery blood probably isn’t carrying much Oxygen! In the past 2 wks, really weird things have happened that must be neurological: a week ago I started smelling cigarette smoke everywhere I went, & no one else smells it (if I didn’t know better I’d think they’re gaslighting me!) I woke up one night feeling something was boring into my inner shoulder blade area, on both sides. So severe I needed a stick to dig it out!! Still have periodic ringing in my ears, sometimes shooting/stabbing pains (tho Lyrica takes care of most of them) & I’m getting off-kilter, jittery & very “twitchy” again.

I’ve partially biceps tendons & biceps on both sides, & partially torn one of the 4 tendons that leads into the rotator cuff. That I blame on Levaquin, which is infamous for it. I’ve strained the tendon across the bottom of my rt foot, rt knee & hip are acting up in the joint too. The piece de resistance….my rt hand, arm & shoulder (all the way up into my neck) are tingling & buzzing almost constantly. Imagine something similar to when you hit your “funny bone” in your elbow. This’s the same way that my left shoulder, elbow & wrist were buzzing just before I had spinal surgery, a diskectomy (they remove a herniated disk & put a piece of bone in betw. the 2 vertebrae & “fuse” them.) I’ve known I had at least one more that was going to “blow out” at some point, just didn’t know when. I so do NOT want to go thru this but it’s not optional, unless you’re willing to lose the use of a whole side of yourself… After the surgery I could not wash my hair for 4 days (ick.) For six full weeks I could lift nothing more than a treacup of tea or a piece of toast, could only get into the car to go see the surgeon. It’s that recovery period more than anything that bites.

When this happened just about exactly 8 years ago on the left side, my orthopedist (whom I love dearly) told me this was pretty much necessary if I wanted to retain use of that half (“You have a choice but it’s not a good one!”) The orthopedic surgeon, whom I also adore, told me then that there was at least one more disk which would blow at some time. He said he couldn’t tell me if it would be one year, 5, 10 or more, but it was on its way out. I asked him why we couldn’t just fuse all of them (remove 2 disks & fuse three vert.) all at once so I wouldn’t have to do this again. He said “Because that’s bad medicine. It’s not medically necessary NOW to take the other one out, & every disk taken out puts an additional burden on the one just below & just above it, making them more likely to blow out over time.” I know I have 1 partially herniated between my shoulder blades, 1 partially herniated in my lower back, & several questionable ones in my neck: just have to let the experts figure out which one or ones have to be cut this time. I see the orthopedist Monday, unfortunately my neurosurgeon is no longer practicing. He has a special needs child & in order to make a go of his surgical practice, he has to operate & see patients many hours. He cannot work part-time or even a “normal” full-time load, b/c his malpractice insurance is the same whether he operates 5 hours a week or 65. So, because of that idiotic inflexibility (another reason I LOVE insurance…) we have lost a fabulous doctor & neurosurgeon. I smile that he’s being such a good father (consulting now for other surgeons) but it makes the world just a little bit sadder & smaller that he’s no longer practicing…I don’t know who I’ll trust to slice my spine open again…

Tim said in January, right after my last rotator cuff surgery, that this was going to be a surgery free year (then he went and had all those emergencies & surgeries of his own!) He said he meant surgery-free for ME…For me til now it has been surgery free, except for placing the PICC line, but I don’t think we are going to get out of 2009 without more surgery, without the spine demanding it… Lucky Us!!

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Update…..

A cold cold rain, which penetrates straight down into the joints & bones of we who have late-term serious illnesses…I am telling myself that this rain is nourishing the trees & flowers for their long rest this fall, winter, and early spring. Gotta get those plants inside! At least it’s not ice!

Better this week. Last week was a disaster. I ran out of depression/anxiety meds the week before that & my 3 month supply STILL has not gotten here. They claim the doc has not refilled it, she claims she authorized refill on 9/22…and I was close to having a nervous breakdown b/c insurance will not let you get a refill locally when you’re "supposed" to use the 3 month plan. A friend gave me some of one, and I bought some of the others at full price…and finally Costco was able to get insurance to give me 1 month in the meantime. Target either was not able to, or did not try…

Depression & anxiety are universal in Lyme Disease. In fact – I would venture to say that if someone can endure this, and live like this for months or more likely years, and not develop depression or anxiety, then THAT person needs their head examined!

At the same time, when I’d been w/o meds for 2 weeks, I discovered I had another week of the IV meds left, when I thought that Friday was it for 2 weeks. Dr J said that he thought my body needed a break, and he was going to go 2 weeks on/2 weeks off & extend til around Christmas. BUT he did not count that the week we were IN was an on week, he started the next month with 2 on 2 off, and since the week we were in was an "on" week that meant 3 weeks on. These meds are gonna kill me. The others, you have the really bad period after you start on them & then you acclimate. This Tige & Clinda combo, you do NOT acclimate to. It seems as if it gets worse & worse as it builds up in your body no matter how I try to detox.

Dr J pulses Tige through the last stages of his IV txt. I am getting it with Clindamycin for a couple of months, then with merrem/meropenem. It is a KILLER drug – will knock you right on your tail. He starts with the easiest drugs to acclimate to…then adds them and they get progressively worse as you go on. All the others I found I did acclimate to, but Tige…I’m not acclimating. It’s like it’s building up & I am limping to the drug holiday "finish line."

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This discusses President Bush’s Lyme, but then gets interesting…goes into great detail about all of the symptoms from which we suffer, and then discusses the origin of this biologically altered microbe. Plum Island is widely understood to be the source of this pathogen; we are not suffering from anything “natural” at all….but a biologically engineered microbe to be used as a bioweapon, which “got loose”…

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I don’t know that much about gluten allergies; I’m just giving it up myself (b/c Dr J insists) & going on Dr S’s anti-inflammatory diet (b/c Dr F insists.) I need to stop looking to food for comfort! Dr F assures me this is the case with a great majority of Lyme pts (many of us had no weight issues prior to our little invading hordes….including me. (I got down to a size 4/6 after my first two kids – but after the third, very shortly I started getting sick…)

OK so the anti-inflammatory thing..this week I can have 3 oz fish, a little rice, and veggies/fruits. SOME of them anyway. Yesterday I ate a salad w/o dressing. Wow……. By week 3 I can have chicken!!!! If you cheat on week 1 you have to repeat it til you get it right. O.M.G. And gluten? Ever tried to find anything w/o gluten (wheat product) in it? Potato bread is made of potatoes right?? But guess what – can’t eat that – it has gluten!!!

IV Tygacil (Tigecycline) is kickin my butt all over the place, along with IV Clindamycin and several orals for Babesia, a couple for Bart, blood treatments and lets not forget our favorite – Flagyl 4 x a month. So I am, and have been for over a month now, being pounded and pounded and pounded. Most drugs are horrible (pain. Nausea…) at first then your body acclimates. With these last two (Levaquin & Tige) the longer I take them the worse it gets. I nearly had a nervous breakdown last Friday when I realized that this week was NOT a week off as I had thought…course this is another story for later too…

I have two more IVs of each tomorrow then I have a break, and I think it’s 2 weeks this time. Dr J said he doesn’t think my body can take 3 weeks on, one off anymore so as of this next cycle I get 2 on, 2 off. YEA!!! My body shouts. But then…treatment will continue til almost Christmas, meaning much higher costs. I think of all the children with this, going thru this treatment (and being told by docs & school officials that it’s all in their head, and they just didn’t want to go to school, as 2 of mine were.) Between the pain, nausea & fatigue, I can’t imagine them enduring this. The terrible microbes infecting them, the herx & the hi dosage drugs… It would be too much for any child – it’s almost killin me & I’ve been thru a LOT.

Tim’s treatment still continues, with a vacuum pulling out the drainage and trying to help the wound close, that he has to wear 24/7. (Imagine going to work with tubes hanging out, a little purse and occasional slurping noise. Poor baby!!) I cannot even imagine meeting with the high-level people he does, or sitting in a quiet meeting – SLLLUUUURRRRPP!!!! I’d be UNDER the table…

So, I’m also bloated up like Veruca Salt in Willy Wonka & the Chocolate Factory…except I am not blue, I guess we should be thankful for the small things…I don’t think there is a de-juicer my size available…One of my anti-seizure/anti-neurologicals, Lyrica has serious weight gain side effects (just what we need) but I have to weigh that (ha ha) against the shooting & stabbing pains that were “killin me” before & the Fibro-type pain too.

Excruciating!! Lyrica has been a wonder drug for me in that way.,

My water retention has been way beyond what I would’ve though my capacity could be, esp when taking the IV lactated ringers on days off of IV meds. It’s detoxing the system but it also bloats you & you have “fake” weight gain.

It looks real though so I sneak around mirrors.

Dr J told me that besides the water retention those of us who have the “stomach bump” that is NOT a “baby bump” – he says that is b/c our organs are inflamed, enlarged, not working properly, and we’re not only holding water but AIR (yeah what kind of “air” is that???) He says these issues will resolve as the treatment does its job. I know I will not get my perfectly flat tummy back, lose the wings under my arms or my extra chin & junk in the trunk w/o work but at least it is not as bad as it seems!! And once the Levaquin & dizziness are out of my system I am going back on the treadmill…

So there’s my pep talk for the day!

Trying to keep my head up thru it all….

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I wrote this to a good friend just a few days ago. She compiles prayer requests for bunch of us. She asked if I was “still here…” Here’s my reply, & her answer to me was amazing too, and follows…

I’m still here, just having a very rough time. All these meds are killing me, & my emotions are right at the surface. I can’t seem to stop crying – I’m scared for the country & healthcare stuff, for my kids, (health plus Christina & Demetris are right in the middle of the bombings, car-bombings, & fires in Athens.) Kel still lives here but more like a hotel w/ school; & job, & I am being a perfectly terrible empty-nester. The downside of having kids young is having them grown in your mid-forties! We are struggling mightily financially and I wish we could find a way to get some help here @ the house….but paying for it? On one income?

Tim’s b-day is the 29th, mine the 13th, & I am hoping something good will happen (silly huh?) Please pray for:

Tim’s wound from surgical complications in June to finally heal, all of our Lyme & co-inf sxs to improve or stay stable as fall comes on, for Tim, Karen, Christina (24) & her husband Demetris (27) in Athens amidst car-bombings & fires, Tony (22) who’s still searching, and Kelley (18) just starting college. And my folks, Dad has just developed yet another health issue.

Thanks, and much love….Karen

Her response…

Hi Karen!

I can tell you are really hurtin’ cuz there wasn’t anything funny in your last message to me! :-( You are bearing a lot of burdens right now. You are weary and heavy-laden. Go to Him. Cast your cares upon Him. Have you read "Feather in My Nest" by Beth Moore? I bought it for my sister whose 2 children are almost both out of the house (January). She read it in a week. You will appreciate it as the author has 2 daughters. Very funny essay about hairbrushes. Also, Susan and Barb’s Guide to the Empty Nest from Family Life Today, is full of tips for this phase of life. Of course, those books are for "normal" people. Much love and hugs and prayers and hope, Marjorie

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Well….the GOOD news is that I have not torn the left rotator cuff for a third time (last surgery less than a year ago; prior surgery less than a year before that – on both of them (4 weeks apart.) But my sneaky shoulder radiating down my biceps has been hurting like a *&^%$#@ so another MRI. I must say being crammed in there for an HOUR with the shoulder strapped into an unusual position hurt like crazy. Right arm went to sleep but that’s nothing comparing to the screaming pain in the left one.

Note to self: locate the pain meds & take them PRIOR to these MRIs….

So, they found excessive swelling & excessive fluid in the joint (yeah, I got locked up…) “degenerative changes” (whatever that means…and don’t comment that it means I am OLD!!! J) and (drum roll please…I have torn my infraspinatus tendon near the junction. Huh? No, that IS in English… I haven’t googled it yet to see what it does but I have been doing NOTHING to have torn anything. I was told no exercise, do nothing – that’s what I’ve done…

OH! And a knee injury of old is acting up, the tendon along the bottom of my foot and now my right biceps is starting to radiate too.

Not to self: You should have known better than to take Levaquin at all. This is a stated frequent side-effect and you HAVE no connective tissue. Can he just put metal wires or something in there, take the tendons & ligaments out??

Kelley has an A in Calculus so far! In other classes she says she wants to hit her profs in the head with a brick. Since Lyme does send you rogue impulses and inhibits your control of them, I sincerely hope every brick on this farm is solidly attached.

Tim’s now healing slowly but surely…they have attached a vacuum to his wound he even has to wear to work – tubes hanging from his jacket and a little purse. Not to mention the periodic sucking sounds…..this has been going on now for 3 ½ months! Can you imagine? Poor baby!!

Dr J has now decided to extend my IV treatment for a couple of months, b/c I am not well enough to switch to orals only yet. I should be done but it’s now going to be close to Christmas. He’s put me on two weeks off, two weeks on b/c he feels my system needs more of a break – it’s just taking the meds so hard. Well…Yeah!! Not too many people I have heard of can tolerate IV Clindamycin, IV Tigecycline, oral suspension of Mepron, Artemesinin, Mycobutin & plaquenil, plus about 20 other meds for side effects…

And Medicare is no longer chipping in to help with the Meds cause I hit my donut hole. And the ophthalmologist says Kelley needs Lasik (ka-ching, no insurance coverage of course) soon or she will lose her sight in one eye. Sometimes I wonder why we HAVE insurance; they pay for so little and it’s so expensive. I guess it’s in case we’re in a terrible accident, all broken up, & unlucky enough to survive it.

Thought for the day:

Sometimes He calms the Storm, with a whispered “Peace Be Still”

He can settle any sea, but that doesn’t mean He will…

Sometimes He holds us close and lets the wind & sea go wild

Sometimes He calms the storm, & other times He calms His child.

I know some of you have given to us and given to us…but if God moves you or you feel any pull to make a donation, now is when we really need it most, when Tim’s treatment is continuing far longer than we anticipated, and so is mine. Thanks for visiting my blog…

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facebook

Karen Elizabeth Mierke Hausfeld
4:28pm Oct 2nd
Dr Joseph Jemsek – SPEAKS THE TRUTH
To
This is my fabulous doc (who’s about killin me now) but whose daughter (5) was just diagnosed w/ leukemia & his wife w/ breast cancer. He’s moving his practice to DC (after today) b/c SC has joined NC in being buttheaded. AFter all he’s been thru, fighting & standing up for us, now us. He’s a saint. You can see his kids & wife come up to the stage at the end.

Karen has shared a link to a video with you. To view the video or to reply to the message, follow this link:

http://www.facebook.com/p.php?i=865315579&k=SY16X2R33T6G6BD1RA2TUUTUR6BAZYZFRUIU&oid=1045549555065

If you do not wish to receive this type of email from Facebook in the future, please click here to unsubscribe.
Facebook’s offices are located at 1601 S. California Ave., Palo Alto, CA 94304.

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facebook

Karen Elizabeth Mierke Hausfeld
4:11pm Oct 2nd
Under Our Skin – Watch the Documentary Film for Free
To
This is something all of you should watch. I have the movie, both the “home view” and the “puiblic viewing” – just got the fully-loded w/ extended scenes, etc but haven’t seen it yet.

Karen has shared a link to a video with you. To view the video or to reply to the message, follow this link:

http://www.facebook.com/p.php?i=865315579&k=SY16X2R33T6G6BD1RA2TUUTUR6BAZYZFQUIX&oid=1181121380478

If you do not wish to receive this type of email from Facebook in the future, please click here to unsubscribe.
Facebook’s offices are located at 1601 S. California Ave., Palo Alto, CA 94304.

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Well….the GOOD news is that I have not torn the left rotator cuff for a third time (last surgery less than a year ago; prior surgery less than a year before that – on both of them (4 weeks apart.) But my sneaky shoulder radiating down my biceps has been hurting like a *&^%$#@ so another MRI. I must say being crammed in there for an HOUR with the shoulder strapped into an unusual position hurt like crazy. Right arm went to sleep but that’s nothing comparing to the screaming pain in the left one.

Note to self: locate the pain meds & take them PRIOR to these MRIs….

So, they found excessive swelling & excessive fluid in the joint (yeah, I got locked up…) “degenerative changes” (whatever that means…and don’t comment that it means I am OLD!!! J) and (drum roll please…I have torn my infraspinatus tendon near the junction. Huh? No, that IS in English… I haven’t googled it yet to see what it does but I have been doing NOTHING to have torn anything. I was told no exercise, do nothing – that’s what I’ve done…

OH! And a knee injury of old is acting up, the tendon along the bottom of my foot and now my right biceps is starting to radiate too.

Not to self: You should have known better than to take Levaquin at all. This is a stated frequent side-effect and you HAVE no connective tissue. Can he just put metal wires or something in there, take the tendons & ligaments out??

Kelley has an A in Calculus so far! In other classes she says she wants to hit her profs in the head with a brick. Since Lyme does send you rogue impulses and inhibits your control of them, I sincerely hope every brick on this farm is solidly attached.

Tim’s now healing slowly but surely…they have attached a vacuum to his wound he even has to wear to work – tubes hanging from his jacket and a little purse. Not to mention the periodic sucking sounds…..this has been going on now for 3 ½ months! Can you imagine? Poor baby!!

Dr J has now decided to extend my IV treatment for a couple of months, b/c I am not well enough to switch to orals only yet. I should be done but it’s now going to be close to Christmas. He’s put me on two weeks off, two weeks on b/c he feels my system needs more of a break – it’s just taking the meds so hard. Well…Yeah!! Not too many people I have heard of can tolerate IV Clindamycin, IV Tigecycline, oral suspension of Mepron, Artemesinin, Mycobutin & plaquenil, plus about 20 other meds for side effects…

And Medicare is no longer chipping in to help with the Meds cause I hit my donut hole. And the ophthalmologist says Kelley needs Lasik (ka-ching, no insurance coverage of course) soon or she will lose her sight in one eye. Sometimes I wonder why we HAVE insurance; they pay for so little and it’s so expensive. I guess it’s in case we’re in a terrible accident, all broken up, & unlucky enough to survive it.

Thought for the day:

Sometimes He calms the Storm, with a whispered “Peace Be Still”

He can settle any sea, but that doesn’t mean He will…

Sometimes He holds us close and lets the wind & sea go wild

Sometimes He calms the storm, & other times He calms His child.

I know some of you have given to us and given to us…but if God moves you or you feel any pull to make a donation, now is when we really need it most, when Tim’s treatment is continuing far longer than we anticipated, and so is mine. Thanks for visiting my blog…

Read Full Post »

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