Not to be dramatic but I am ready to go....

[MakinIT]

I'm done with this entire mess. I'm done with my immune system. I'm done with the husband who doesn't respond to me or understand what the hell I'm going through. (he thinks since I'm home all day I can just do all the housework...Problem...new disease I have..I am allergic to ALL dust, mites, molds and am not supposed to be around them or chemicals or I get ill...he won't let me hire a cleaning service or get those room purifiers) I do one major thing in the day and I am Exhausted. I will grant he gets up at 6:15 and often is on the go until 8 or 9 doing stuff for work (school) so he is exhausted and crabby, demanding to know why a 5 course meal isn't made, laundry isn't completed and house isn't immaculate. :rolleyes: I developed an allergy to my pain medication, Avinzna, which was the med that made my life finally normal. I used it 3 months, no other pain meds except the occasional percocet or valium, then Whammo my body goes into complete freak out. I have eczema but nothing bad since high school (20 years ago) I woke up, my hands were incredibly swollen itchy and oozy, my legs itchy, and I thought "eeeek, my eczema is back"...I called a dermatologist from the phone book, by my after noon appointment I looked closer at my legs and realized, by pushing a credit card into the edema, they were blisters that could be moved around and popped. They took a biopsy, sent me to an allergist that afternoon, SHE took a bunch of blood...sent part to mayo clinic. This was nearly 2 months ago (I don't have a definitive report yet) However, They D/c'd my Avinza and put me back on MS Contin. The stupidity curtain and anger and frustrastration came back. So, the allergist talked with my GP about Duragesic patches. we've tried those, and slowly increased strength over last 2 weeks. I put 75 mcgs/hr 2 days ago and broke out in massive welts yesterday...my back, my face, my belly, my neck, knees....My husband had to go at mid night to get benadryl and I had my epipens ready. (took my damn patch off.)

So, It's back to the drawing board. I am so disappointed, angry. I don't feel like my kids respect me, because my husband no longer shows me respect...although, in his favor...he isn't out there honestly trying to make my life miserable. He just doesn't notice the rudeness....they don't behave towards him that way and when I get angry, he tells me I'm just hyper emotional. I try to find things I can do...I'm involved, from home, in some political things (not saying :loco: ) , Argue with my father in law (who lives with us and hasnot bathed in 3 years) about things like ,oh, covering the food in micro he's heating (yesterday it looked like someone got sick on the inside of my brand new microwave because he adamantly refuses to cover it. Since I hadn't used it in 3 days it was crusted on glue. He got a yelling like he prob hasn't heard since he was a child. Got mad, used his "vision loss" as an excuse (doesn't take vision to throw a paper towel over a plate of leftover stew)...I know, it all seems like micro problems but they have just come together in one big problem I can't pull apart. I see a therapist, and he's good. He works with Chronic Pain patients. His suggestions are good but I can't follow through on them, b/c my husband is such a strong person. I really have lost all my connections, I'm lonely, and tired of the pain, exhaustion, and criticism.

Thanks for listening.

[emilyrose197377]

I am sorry for all you are going through. You are in my thoughts and prayers.


:grouphug:

[MakinIT]

Thank you Emily.....I just think mebbe I'm on the low part of the roller coaster. Chronic pain patients, I believe, also go through the 5 stages of grieving that a terminally ill, or relative/friend of one who has or will die except we never really stay at that acceptance state. I thought I was there, but it is a fragile place to be. Takes not much to start the anger and bargaining over again...not to mention depression.

[Janie Miranda]

:grouphug: :grouphug: :grouphug: You are in my thoughts and prayers too. I certainly hope they can find a pain med for you that you won't have an allergic reaction to.

[ICLori]

You're in my prayers...sounds like you are really going through a rough time...you've been through hard times before, though, and I know you'll get through this rough patch too.

I hope things get better soon.

Blessings,
Lori

[tigger_gal]

sending you out really big hugs... men can be such men at times :biglaugh:
they will never understand.

[Baba Yaga]

MakinIT -- There are many kids that don't fully respect their parents, especially their mothers, until they reach the struggles of adulthood themselves. But as they mature, their respect will grow. I am sure they love you alot though -- adults are often just invisible "losers" to children -- even the parents the children love and depend on.

I am sorry things are such a struggle for you right now. Please hang in there -- and stay with us here. There are plenty of us here who understand various aspects of your situation.

Keep trying, keep open -- you don't even have that full report yet, maybe it will have even more information.

Vancouver area is having a gloomy winter. I hope you get some sun and blue sky soon to strengthen you.

:grouphug:

[Bianchi]

Gosh, that's terrible and I feel for you. Hopefully they can give you some meds, that you are not allergic to. There must be something out there.
Hope and pray you're feeling better soon.
Bianchi

[ihurttoo]

I am so very sorry. I wish I could help you. But I dont have any answers. I just wanted to tell you that you are not alone. I am sending you big hugs and I will be praying for you. :grouphug: --Amy

[creatingkarma]

You have not lost all your connections! You are very connected to all of us! When you feel like you have no one, please remember that you have us. I hope that you can find a pain med that you're not allergic to & I also hope that your husband will become more understanding. Sometimes our family & friends just don't understand what it's like. I'm sorry that you feel like you don't have anyone. Sometimes I feel like that too, even though I know better. About your dust mite, mold allergies. Have you tried using any natural products to clean with? I'm very sensitive to the chemicals in cleaning products also (eats my hands away, migraine, breathing problems) & I sneeze my tail off & start itching everytime that I dust. Hey, I just thought of something - Rubber gloves & a dust mask!!! I'm gonna go get some tomorrow! I hope this bad spell gets better soon. Hang in there! :kissing:

[ICNDonna]

There are some products that work pretty well for those who are allergic to dust. My oldest child (now an adult) is allergic to dust. When he was small, I solved part of the dust in the air problem by using a damp cloth for dusting. Then they came out with Endust, which works very well for dust allergies.

And I have a hint about cleaning the microwave. If you put a cup of water in the micro and bring it to a boil, then let it sit for five minutes or so, all that dried on stuff will just wipe off.

I hope you find some solutions to your allergy problems. I do understand how frustrating allergies can be.

Donna

[Cheries]

Since you have such a hard time with meds, have you looked into the spinal cord stimulator? I am going to look into that myself. I am on a duragesic, but it doesn't really get my pain and not even when I am in a flare. Sometimes I think we just plain get tired. Tired of dealing with this. But you are a strong person and althoug others don't understand your strength and what you can do, don't be afraid to set limits and boundaries. I get very frustrated and angry when I go through a period of time when I let others walk all over me, nothing is going right, and multiple things are going wrong in my body. I totally understand it. The only way I really make it through those time (like right now actually as I am way flared, ) is to remind myself that I will get better and not to loose hope. If it takes me until my dying breath, I am going to find some relief for this. And you will too!!!

[MakinIT]

As far as spinal cord stimulator goes, we tried that about a year after my dx...my problem is: most people's pelvic nerves are like a fist near the spinal cord (as my nuerologist explained) I've had so many invasive procedures and so many adhesions....the fist opens up and nerves float free. So, when they attempted to implant the stimulator, every time they turned on the charge, I went into a massive spasm. He tried for an hour to get "the sweet spot" as he called it. I was crying and begging him to stop. My entire body was sore (muscles) for over a week.

I know I've been through rough times before. It's always been IC related though and I knew what to expect. Now, I have this different crap going on. I have the dusky rash crawling from mid chest to my eye brows (did this initially and is a marker of this disease) It is EXTREMELY painful. Finally got the Welts down today but again, the dusky rash is on my legs. Basically, only my tummy and butt are rash free. Now that I'm back on MS Contin (strictly) I wake up 5 times a night to pee. So I'm exhausted. I am less emotional than I was the other day....I am lonely, and Iwould really like to get my home sanitized. (when I was working, I had a very rigid schedule of cleaning and it was immaculate...I can't summon up the energy to scrub out the bathtub most days. It took me two days to get lightbulbs changed in the fan light in the dining room.) I'm scared..and I feel useless. I see my husband working so hard and he is just exhausted. I know if applied for a job in my school district I would get it. BUT I can't handle the stress, or physical nature.

Thanks for your help...I feel like you have given me some support ;)

[MakinIT]

Oh Donna...Thanks for the helpful hint...I was just about taking a chisel to the crud!

[Sarojini]

I am so sorry you are going through all of this allergy stuff. I know what it is like; I have had bad allergies, asthma, and dermatographism, which is a severe form of sensitive skin (you can actually take the blunt end of a pen, write on my skin, nand have what you wrote come up in huge welts a few minutes later... ugh).

That is AWFUL that your hubby won't even allow room air purifiers!!

I was so lucky that when we were dealing with a major asthma flare for me, my husband bought me 2 Sharper Image Ionic Breezes and 2 Honeywell HEPA air cleaners. He also got a new vacuum that takes special allergen-trapping bags and has a HEPA filter on the outlet, so it cannot release dander or mold or dust into the air. (He USES it too -- what luck ;) )

They make a HUGE HUGE difference; even HE notices the difference in the air and comments that he feels better. Even getting just one for the room you sleep in would help you. Gosh it makes me so mad that he won't even allow that one small investment into your health. :( I wish there was more I could do for you :(

[Dixiefireball]

Sending you Hugs and Prayers for Everything to get better soon. You have been threw so much!. I know what is like to have children who have no respect for there mothers. My two oldest one feel as tho. Why should they listen to mom? She is always sick anyways so there for we can get away with almost anything. GGGGRRRRR!!!!
We just have to keep taking our stands with them no matter how bad we feel.
I understand your husband is tired and all, but he should stop and think what if he was in your shoes?
I wish i had some type of answer that would help you.
rhonda

[MakinIT]

Hi Saronjini:

I don't think it is so much "he won't let me" as he gives me a massive guilt trip about spending the money. My Disability check covers very specific bills. If I bought the purifiers, there would be either a home equity or car payment loan not made. Not pretty either way...(or ....only little food) My husband has a set pay plus consulting work. He managed to put together money to take my oldest to Italy next month (not me, her..for her 16th) . When we first found I had this new thing, he was all "we will do whatever you need to feel better." HA. He shopped around for filters and told me a few days later they were expensive. I told him that to begin with. That's when I got the "wow, expensive...blah..blah...bills..blah..."..lecture. I truly think he feels I'm not that ill. I guess that's common for people with chronic pain. Those who you depend on for support can be real buttheads. He is very self involved. A wonderful father, terrible husband. (not abusive, hasn't ever called me a bad name but can be cold as ice towards me) Sometimes he looks straight through me like I'm invisible. I used to think it was my weight (I used to weigh 220) I'm now 150 but he doesn't acknowledge it. (I had to buy new shoes for Pete's sake, cause I lost 2 sizes in my feet..) "sigh" I think alot has to do with the fact that my libido is nil b/c of the pain meds and It hurts like hell to...you know. Actually, the last few times have been fine, enjoyable even, but he likes to throw in my face that he didn't know he was going to be celibate when he got married. Nice, eh?

Your skin disease, with the welts when writing...That only happens to me when I'm already welty. (hmmm...is that a word) I'm going to call the doctor tomorrow RE: my "back east" tests. Man my skin hurts, I feel like it's going split apart from my chest up to my neck and cheeks. I just want to work again and feel productive. The worst part of all this is: My husband works his rear off, is grumpy, and I look for teaching jobs that I could do. He tells me to stop worrying about it, use the time to take care of Kelsey (my 10 year old) but then complains we are just not making enough b/c I don't work. What to do, what to do? At least I know since I've been off Avinza I'm in too much pain. I could've worked on that stuff.

thanks all

[MakinIT]

Thanks Dixie: My kids have been stinkers (especially the 10 year old) since pre-IC. The oldest is ok, just incredibly emotional. The 10 year old has had three adults in the house since she was 4 (her grandpa) It's fine when grandparents spoil kids when they don't live w/ you, but he lives w/ us and never disciplined her. She became quite disrespectful with him (I didn't know about it) Then it just kept going. And I didn't have the energy to fight with her. She is Incredibly stubborn.

[MakinIT]

THIS SUCKS! Now that I am back on MS Contin, it has to be a lower dose. About 2/3rds of what I had. I have a call into my doc, waiting for his reply. I'll have to drive 15 miles to his office (to put in commute time "40 minutes" ) for an appropriate script...(Can't be faxing those class II meds now, can we?) Anyway, my pelvis is throbbing (.......hmmm, sounds like a bad Harlequin novel) with my heartbeats, and I can feel my bladder filling. OH then as I'm sitting here, waiting to go volunteer some time at a school, the phone rings...it's the cable company...(also our DSL provider) My husband, 3 years ago, took over the book keeping and paying bills except for a home equity and car payment. He pays everythings else...which is alot. So this woman says our bill is past due two months and they are cutting us off tonight unless I bring them a check for 300 bucks today. I don't even have 300 in my account. (we stay seperate...we have a horrible time keeping checking accounts together...however, we are on each other's account so often I will say "I'm gonna write a check for Pizza from your checkbook" or vice versa. ) When I kept our budget, the books and bills were organized. I paid everything at the beginning of each month. However, I was not disciplined about getting the debt under control. Roger is very scattered. He pays bills when they are due, not on a specific "date" to do bills. That is very scary to me b/c he is so busy he can't remember stuff, and if I remind him he gets defensive. So, I'm going to have to go to his classroom and give him this lovely news. (he blames any missed bills on us going through the "bill drawer"....I don't touch that drawer, neither do the kids....but I have offered to file them in a file folder each month as they come....he just sits and *****es.) What are you gonna do?

If you don't hear from me for a while, it's b/c cable is cut. yippee. (Can't wait to see the 16 year old's face when THAT happens...Miss "my space" and IM...yes, her account is private and only people she wants on can come in. She actually lets me see the page, although I've never asked...I think she's proud of it...it is kinda cool.)

Talk to you soon.

[MakinIT]

OH PLEASE someone give me advice: I'm seeing my pain management doc tomorrow morning and usually it's just him telling me I should'nt use valium and me saying yeah, yeah whatever...and looking over my narcotics and telling me to keep on trying. Since I'm having these allergies I HAVE TO have some knowledge of what to do . I can't be off pain meds. I actually tried to wean myself very carefully (little bit at a a time) and I was vomitting sick and in terrible pain in my pelvis for for 2 days..(I thought it would go away and it kept getting worse.) I don't know what to do. I'm allergic to this crap but I have to take it. My allergy doc had me order a med from canada that Europe and Canada use for severe allergies (spilling mast cells), (The FDA hasn't approved it due to, as my doc put it, political pressure...this stuff would put current US allergy meds to shame.) So, outta pocket, 80 bucks for 3 months which isn't too bad.

I will check tomorrow...please help if you have any idea...

[MakinIT]

Well....my drama show has settled for now...my canadiam drugs have arrived. I'm still breaking out but not as bad and I'm beginning to wonder if it isn't something else I'm having prob with...we shall see...