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» LymeNet Flash » Questions and Discussion » General Support » how do lymed families do it?

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Author Topic: how do lymed families do it?
lymemommy
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Hi Everyone.

I wanted some words of wisdom from our families with lyme, on how parents have managed to juggle their illness and treatment, while also managing their child/children with lyme.

I ask because, after having my son go through treatment for almost a year, and not feeling so good myself, I have just found out that I test positive for bart hens, bart quint, and myco.

My igenex lyme test hasn't come in yet.

I am a bit anxious about, well everything.

From what I have gathered reading the posts of others, treatment could knock me out for a bit. How does one manage two kids when they are herxing (the parent, not the kids)?

On the up side, my older child (who has lyme) is doing great. He's running and riding bikes again, and wants to swim everyday.

My little one has the cling-ons lately, and I'm worried to death about him being sick too.

My husband has agreed that he and the little one need to be tested through igenex, since the regular labs did such a great (not) job of detecting lyme and co with me.

I tested negative 3 times for lyme at labcorp over the past year, and negative just last month for bart at labcorp as well.

Next week is the end of school. after that the kids will be home with me, which I suspect will be a challange with me just starting tx....

Anyway, all words of wisdom are appreciated. I know that we will get through this, but trepidition is appropriate, right???

Take care all,
kp

Posts: 394 | From tinton falls nj | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
feelfit
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Just wanted to say I am praying for you, I have no experience w/ mulitple members infected....can't even imagine!

Sending you strength and hope,
Feelfit

Posts: 3975 | From usa | Registered: Aug 2007  |  IP: Logged | Report this post to a Moderator
njlymemom
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lymemommy, sent a pm

--------------------
This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.


The shortest way to do many things is to do only one thing at a time.

cb

Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008  |  IP: Logged | Report this post to a Moderator
Tracy9
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NOt well, that's how we do it.

I feel my kids are raising themselves, we haven't had a sit down dinner in years; they grab cereal or mac and cheese; our bills aren't paid, our car got repo'ed, electric and phone shut off more than once, oh it goes on and on....

It sucks. It just plain sucks. And we have no family or friends around that help at all, either.

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005  |  IP: Logged | Report this post to a Moderator
Geneal
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It is hard to expect the unexpected.

I have been treating for over 20 months now.

My children for over a year.

My husband has been off treatment more than on....but is doing so poorly he's on again. [shake]

It is hard. There is no rest for the weary.

Or mothers.

My husband can lay down and take a nap if he doesn't feel well.

I rarely have that luxury.

You just do the best that you can do.

I've not always been the best Mom.

However, I am a better Mom now than I was before I started treatment.

I don't know exactly how I've done it or how well.

But I've done it. They've all be fed. Clean clothes. On time for school.

Okay so I've forgotten lunches and signing papers. [dizzy]

I haven't been able to volunteer in my child's classroom. [Frown]

I rely on the support I get here and prayer.

All you can do is the best you can do.

That is what I tell my children.

You just learn that some days are better than others...so enjoy them.

Don't overdo on them.

Know that better days are coming for all of you.

If I can help you in any way please let me know.

Sending you and your family positive thoughts and prayers.

Hugs,

Geneal

Posts: 6250 | From Louisiana | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
lymemommy
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Thank you all for responding.

Right now I'm thinking of that saying "what doesn't kill us makes us stronger."

njlymemom, geneal, and tracy, you are most cetainly strong women, even if you forget to pack lunch or let the kids make their own mac and cheese.

(if only my kids were old enough to let them cook for themselves!!!) I'd teach them in a heartbeat, and let 'em do it any time they want!

(their future wives would thank me!)

I know from this past year with my son being sick, how hard it is for a (supposedly) healthy mom to cope, and I know without a doubt that you are the hercules of mom's to being doing it while going through tx.

Now if yall could send me a bottle of that super mom stuff your drinking? I think I might be needing it.

Sorry, i'm feeling a bit goofy right now, trying to put a smile on the bad stuff.

No doubt I'll be asking for help in the months to come, but for now, thank you all, for your words of wisdom.

kp

Posts: 394 | From tinton falls nj | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
oyvey
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Thank you for this post.
I am in your situation--well sort of. My kids are grown but sick enough to not be able to be on their own. And my husband and I are sick too.

I think reaching out for help and understanding is important. And your post is a good example of that. It's where I fall down the most I think--it's hard to know how to talk to people since I feel like I'm living a life they can't comprehend.


but I can give you one piece of good news. As time goes on I'm having more good days and so is everyone else in my family.

Good luck,

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Geneal
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My protocol for pushing through:

At least twice daily visits to Lymenet. [Smile]

Prayer....lots and lots of prayer.

Ability to laugh at myself.

If able to get it, 5 minutes alone with no one calling "Mom".

Lots of water.

Good diet.

Keep telling yourself that you can do this.

Doesn't have to be pretty. [Big Grin]

A cup of coffee (even though you aren't supposed to) has made the difference too.

Hang in there.

Hugs,

Geneal

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mtree
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Kp,

You are a strong mom too......

We'll be here for you..... [group hug]

yep....twice a day on LymeNet like Geneal said....it realy makes a difference....outside my front door their is no one that knows what I'm going through....then I come on here and have thousands....how lucky am I... [Big Grin]

..and you are too.

you are welcome to PM me anytime too.......were nieghbors.... [spinning smile]

[Smile] mtree

--------------------
worrying about tomorrow takes its strength away from today

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Tracy9
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Last week my son had a field trip, and another boy had his mom make my son a lunch, because he was afraid my son would have no food.

My heart just broke. My son does take lunch money to school but doesn't usually like school lunch so he doesn't eat.

We need to get better about finding a way to buy lunchmeat and pack him a lunch, but it seems so overwhelming.

He has been late for school, missed school on days we just couldn't get up, worn the same clothes two days in a row, gone to school with no socks, heavy sweatshirt on warm days, short sleeved on cold days....

Hardest part is I was almost OCD in being a perfect mother in all these areas, fingernails cut every Sunday night, haircuts religiously, dentist every six months, chaperoned every field trip....

I hate it. I hope it changes before it's too late and they are both grown. One already is leaving high school next month.

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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MaryL
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You can do it, lymemommy. It just won't be as good as you want it. You will maybe get up long enough to get something on the table or order pizza delivery, but your family will make it through.

The important thing is to go ahead with tx. You will weather it. I wondered how my family coped when I had sleep paralysis. They managed.

Sleeping 18 hours daily is no picnic. I missed so much of my son's early years. He got used to it.

I was able just to get by with my husband doing a little better than me, but able just to go to work so we could continue to pay the bills.

I managed the medicine, managed feeding us most of the time, but we did a lot of take-out (McDonald's, pizza - whatever was cheap & convenient). I had a lot of frozen dinners that I could microwave. I didn't really "cook" any longer. We survived.

It is surprising at how well your family can survive. You will be proud & humbled at the same time. God bless you.

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bunnyfluff
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Just wanted to say "hi", and lend a little support.

I was sick for years with what was *supposedly* CFS/FMS. Well, now I know it's lyme, and we all have it, but to varying degrees.

What works well with my son, who is now 13, is that we have our snuggle time (don't tell his friends!) on my big bed. He will read to me, and we have these cards called "worst case scenario" that he loves to ask me. We get a lot of laughs at how I get the answers "wrong". We would all be doomed in the woods, BTW, which may explain our lyme, now that I think about it..... [bonk]


We probably have more crock pot dinners than before, and surely everyone has grown tired of the old baked potato standby, but we just do what we can, and try to enjoy the simpler things.


You know, kids like time with you, even if you aren't doing anything 'special'. We walk the dogs and talk, watch Iron Chef.

Put your bills on auto pay, so you can't forget. I make big batches of vegetable soup that I keep in the fridge so ppl can just feed themselves. Ice cream for dinner is not a crime.


Do the best you can, that's all you can do. Don't worry, this too shall pass.


Bunny

--------------------
4 strong winds that blow lonely,
7 seas that run high.

All those things that don't change
Come what may.

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cactus
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Ditto to everything that's already been said!

When you have your good moments, enjoy your kids. Rushing around to "catch up" on everything will only wear you out.

And your kids will remember the love, not the laundry piles (I hope!).

Take all the help that's offered by family and friends, and keep some back up meals in the freezer. My aunt filled our freezer with frozen one-dish type meals and homemade soups, nice...

And if you're like me, keep a secret stash of paper plates for the days you're hands won't work to do the dishes.

I love plants, but when my energy became very limited all of our houseplants found new loving homes.

You will get through this.

--------------------
Did you ever stop to think, and forget to start again? - A.A. Milne

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lymemommy
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Thank you all for your kind thoughts and support, it is very much appreciated.

Tomorrow I should get the results to the lyme test, then hopefully I will have the full picture.

I'll keep you all posted, and take my prescribed daily dose of lymenet, as I have already been doing on behalf of my son for the past year.

Take care,
kp

Posts: 394 | From tinton falls nj | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
njlymemom
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Good luck tomorrow, lymemommy!

--------------------
This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.


The shortest way to do many things is to do only one thing at a time.

cb

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UnexpectedIlls
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I totally empathize with Tracy,

I have 2 children 11, and 1... My son has Lyme disease, I am VERY ill with Lyme disease and my fiance is also sick (we think lyme)

I have not been able to enjoy my daughters first year of life, because 10 months of that year have been completely bedridden needing the assistance from my fiance for EVERYTHING.

The bills arent paid because my fiance had to go to anotehr job that was part time so he could take care of us. We have nothing, food is scarce, bills are pilling up, house is a mess most times, laundry piles up, my poor 1 year old hasnt a clue. WOrst part is my fiance is in charge of everything, he is Dad, Mom, Caretaker, Provider, Housecleaner, Lover, Friend, cook, cleaner, shoulder to cry on, advocate and so on.

It is very hard because like Tracy, I was OCD , The hosue was always clean, I was the baseball mom, very active and always on the go. I feel like a burden now. I have lost my identity

My son had to go and stay with my grandparents (who live right on the same driveway as me) because I needed so much care, we needed someone to be able to care for him. He is doing better , but still very fatigued.

My 1 year old daughter doesnt get to go outside and play like other babies because mommy is so sick and cannot leave the house. When I am not in need of something my fiance tries to get her for walks. It is impossible in our house right now. We also have no help, and have lost all of our "friends" and most family.

Now that my fiance is getting sicker and in need of treatment himself...we dont know what we are going to do. PLus the fear of wondering if our 1 year old baby girl will be safe from this madness.

I am not trying to scare you , but this is my truth. I pray you get through this. I am so sorry that this is happening to you.

--------------------
"You'll be surprised to know how far you can go from the point you thought it was the end"

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lymemommy
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Just a brief update...

The igenex test came back. Negative.

BUT. The doc feels that it is not uncommon for a person to have multiple co-infections and have a negative lyme test, but to still have lyme.

(I hope you could all follow that). I otherwords, negative test doesn't mean that I don't have it, particularly with 3 positive coinfections and lots o' symptoms.

She wants to treat for a month and retest. She feels that I have too many symptoms to assume that there is no lyme.

So I have an rx for rifampin, and we'll see what happens.

In regards to my son, he continues to do great symptom-wise, but has been having a hard time with abx over the past month.

I also made an appointment with the LLMD for my husband, who has lots and lots of stretch marks.

All of your feedback is very much appreciated. It helps so much to know that there are others out there who can relate, and care enough to offer their support to nervous mom's like me.

thank you.

kp

Posts: 394 | From tinton falls nj | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Tracy9
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WOW....

What a great thread. I can relate to SO many things, and I got so much out of this thread!

OpTiMisTick, what wonderful thoughts you posted here. My 12 year old has Cheerios and ice cream most nights, I'd try the crock pot meals but he is such a picky eater he won't eat most "real" food anyway.

And I've coincidentally found the grocery bill is far lower when you never make supper....I dont' think we could really afford to make meals most nights anyway.

My husband and I are both very ill, but he traveled to Oregon for his daughter's graduation this week, so I am on my own. My son was sleeping with me and up most of the night with a nasty cold. In the middle of the night,I called the school and left a message that he wouldn't be coming in due to illness, shut off the alarm, and went back to sleep.

At 8:30 this morning the phone was ringing off the hook. My son had gotten himself up, dressed, gotten down our 1/2 mile long driveway and gone to school on his own. Trouble is, he has severe ADHD and had forgotten to take his pills. He was in the nurse's office.

My 18 year old son had the car (we are down to one, one got repo'ed and one has a blown engine), so after getting through my shock that he had gone to school all on his own, I had to tell the school I had no way to get his pills to him.

They ended up just sending him home on the "short bus" and he stayed home, as he was sick anyway.

Phew, what an ordeal. And this followed last night, when my older son had gone to a friend's house for a bit. He is also very sick with Lyme and company, and being totally exhausted, he feel asleep on his friend's couch and never called. I had by 2 am called the STate Police and reported him as missing. At 2:30 he finally woke up and called me.

All this while hubby is away for the week. Oh and of course I started herxing as soon as he left. So I've been in bed all week unable to take care of much of anything.

Bunnyfluff, we love snuggle time too. Movies in bed are our number one activity. Eveny 18 year old will join in sometimes.

Like many others, I have no support system,all family and friends have drifted away, many even though they claimed to understand found at some point my not answering the phone or responding to them in a timely manner offensive.

I think what bothers me most about that part is that if "Lyme disease" were called "breast cancer" there would be no explanation EVER needed.

Shandy, my heart breaks for you. I wish families like ours could share a house and take turns doing things based on who feels best each day. I can totally relate to your situation, though I can't imagine how you can possibly take care of a baby as sick as you are.

I can't get my 18 year old to do anything around the house, not a thing, not even to pick up after himself, and I am too sick to figure out how to change that. My 12 year old helps a little bit when I need him to, but not much.

I do have a teenage neighbor girl who comes sometimes and helps, and when I can get her to come it is a lifesaver. I pay her $7 an hour which I can ill afford, but I sacrifice everything else, including meals, to get her when I can....which isn't too often, being as though she is an active 16 year old.

What will always be the saddest part for me is that I so desparately wanted more children, at least one more, and I can never have that now. I guess that should be the least of my worries, but I still feel such pangs of sadness knowing that I will never again need to buy children's shampoo, children's motrin, or that in a month my youngest will officially be a "teenager."

Again, it was so wonderful to read all the inspiring ideas from others, and know we are not alone in surreptiously allowing our kids to eat ice cream for supper! Hey, it does have a lot of calcium!!!

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005  |  IP: Logged | Report this post to a Moderator
njlymemom
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Hi lymemommy,

Glad to hear that the llmd visit went well.

Just curious, you said that the WB from igenex was negative, but did you have any IND bands?

I tested "neg" until some of my co infections were more under control. Especially the myco.

Then after about 6 mos of treatment I finally had a pos. WB.....couldn't believe my eyes....after 20 years!

Sounds like you have a great llmd. I think I know who you are going to (Jackson, NJ??). If I am right here, my PT's family go to her - they have made great progress.

Wishing you the best.

--------------------
This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.


The shortest way to do many things is to do only one thing at a time.

cb

Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008  |  IP: Logged | Report this post to a Moderator
Cobweb
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First you go broke-and then you die.

Well, not really, but it sure felt that way sometimes.

I was the first one diagnosed, the MOM, the one who took care of everybody. I was confined to the recliner while the rest of the family came to grips with the fact that Mom was wasted.

Then both dogs tested positive. Two dogs that never left our back yard in the city.

Husband worked three jobs trying to cover the bills.

Our big old house was a money pit, so we sold it for smaller digs-real small, went from 3 story, 13 room house, finished basement , 3 bathrooms, big yard, to a double wide trailer.

As I came to understand the insidiousness of Lyme Disease, the long history of unexplained symptoms in my daughter made me suspicious. So I had her tested.

We both go to the same LLMD now. Husband still works three jobs and wishes I could contribute more.

Oldest daughter feels abandoned because I literally became dysfunctional. We have had somevery good discussions about this.

We're a family that fell apart-but are coming back together again. We struggle on many levels.

WE also receive financial and spiritual support from our Church.

Lyme Disease is a Family Disease whether other members of the family are infected or not. It changes the whole dynamics of the family.

How do lymed families do it?
With prayer , despair, perseverence , ingenuity, refocusing on what's important.

I tell the kids, we may have lost our address, but we haven't lost our way.

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catskillmamala
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Oh yes, I can relate. I have 3 kids, 2 w/ positive lyme dx. My son, age 8, was treated and is fine. My daughter, age 5, is in treatment for the last 18 months, and she is doing much better, but not totally better. My youngest son, well, we don't know . . . he's going to dr j in September.

About 3 months after I got my dd's dx with lyme and babs, I just fell apart. Now I've been in tx on oral antibiotics, buhner and various other treatments for 1 year. My doc wants to do a picc line and move to iv next week. I am terrified of needles, nervous that my insurance, which thank goodness has paid so far will bounce iv and finally realize that dd's meds are $1500/month.

But, I feel that I have no choice. I've back-slid. I am one step away from not being able to drive, work and parent. I am looking at the cost as an investment in my/our future. I just pray that it works.

As far as the parenting goes: I have been a way better parent for doing treatment than I was without. First of all, I was bed ridden with the covers over my head unable to even stand the sound of my children's voices or the bump of their little bodies--basically a totally unacceptable state for a mother.

Second, even when I feel bad, I try to tell them that I still love them, that I am doing everything I can to get better so that I have more energy to spend with them, etc. It breaks my heart to tell my 3 year old that I can't play blocks because I don't have the energy. I often find that the house becomes a series of toys taken out that never get put away because I don't have the energy to discipline that. Instead, I just take out the lincoln logs, take out othello, take out candyland and by the end of the day, you can't even walk.

Third, on meal preparation, planning ahead makes all the difference in the world. If I make a big pot of rice (in my rice-maker because I burn everything now with lymebrain), that's good for a few things. I put a little refried beans, rice and cheese in a tortilla, roll up and microwave. Healthy dinner in 5 minutes without dishes. I also mix rice with scrambled egg for breakfast. I try to put out fresh vegetables (cut up pepper, cuke and baby carrots) whenever I can, especially if they are waiting for food. I have a waffle-maker once a month or so, I mix biquick and a whole wheat pancake mix, make a huge batch and freeze them. The kids can get frozen waffles, that are much cheaper than store-bought.

Even the "support" seems unsupportive. For example, when I had my kids, my "mommies group" brought over dinners. And the dozen's of breast-cancer, and surgery dinner's I've brought to others haven't been returned. My family is "supportive" but even if I am laying on the floor helping my son play , my father is visiting, he doesn't say "go lay down, I'll watch them for 1/2 and hour". My mother has had to drive me to my doctor appointments. With Lyme people around me think that its just a little joint pain and tiredness. They don't realize that It is a life-changing completely debilitating illness. I don't "look" sick so that doesn't help at all. Should I be wishing to look ill?

Even my husband, says he's supportive but he challenges my doc's recommendation to go to IV, meanwhile he hasn't gone to the appointments. He tells my son that we didn't have an end of the school year party last year because "mommy made a big fuss". I was sick as heck! He's probably sick too. Finally, all tick control (chemicals on the animals, pesticides, beneficial nematodes on the lawn, the daily tick checking) is all my responsibility. We need to deer fence desparately, yet it doesn't seem high priority. I'm about to charge a minimum of $6000 in medical treatments and get a needle semi-permanently stuck in my arm, it's not just "in my head".

Sorry for the rant, I'm a little over the edge right now with no one to talk to.

Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
njlymemom
LymeNet Contributor
Member # 15088

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Dear Cat,

I understand everything you are

saying. [group hug]

We all need to "rant".

How would we cope otherwise?

I also am a much better mom since starting

treatment 5+ years ago.

I didn't understand my lyme rage...the outbursts

the crying.

I talk to my daughters about this now that they

are older.

I am so grateful that they understand that

this was the illness, and not mommy talking.

--------------------
This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.


The shortest way to do many things is to do only one thing at a time.

cb

Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008  |  IP: Logged | Report this post to a Moderator
Cobweb
Unregistered


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My daughter never had a 16th birthday party- of all milestones to be out of commission for-ACK.

Her birthday's in Dec. I told her we'd have a pool party following summer,tt-but didn't do that either.

Sadly with LYme I have a list of good intentions that I was not able to follow through on.

As for meals- if it weren't for the microwave packaged dinners my kids would never have eaten supper.

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