Will update

Sorry everyone i got busy but will update later on what is going on

Update

Hope everyone had a good thanksgiving. We cooked at home, its too risky with the time of year and everyone being sick for Jody to go out. She didn't eat. Its ok I ate enough for the both of us lol.
Since they uped her meds she hasnt been sleeping well. Half of the reason we figured out was the restless leg pills were reacting with the meds. Dont know why, the dr said it was ok to take them. So she has stopped the restless leg pills and is sleeping a little better.
As far as eating its still hit or miss. She does try to keep fluids down.
Work is crazy right now. We are doing leaf removal. We have had some rainy days but alot of nice weather lately. Hope the weather stays nice so I can keep working.
We are looking into getting testing done at different hospitals better than UT. We need answers as to whats going on with Jody.
Well hope everyone had a great weekend and be careful out there shopping and goinh to Christmas party's.

Been busy

Hello everyone.  First I would like to wish everyone a Happy Thanksgiving.
I am sorry I haven't updated in awhile. It is the time of year for leaf removal.  By time I get home I am exhausted.
As far as updates on Jody, her rheumatologist has uped some of her medications. 
She goes in on Monday December 1st for something called a swallow test. Not for sure what they are looking for.
Jody is still having trouble keeping food down. Wish they would figure this out already.  I am not for sure what if anything she will be able to eat tomorrow. 
We are staying at home for Thanksgiving & will be cooking a turkey & a couple other things. Just nothing to heavy or to big.
Jody & I hope everyone has a great Thanksgiving & remember be safe out on the roads.

Long week

Holidays are getting closer so is Jodys birthday. I know she is not looking forward to any of the holidays due to not being able to keep food down again this year. A couple years ago she was sick like this & watched everyone eat around her. I know it must suck.

Jody goes back to the drs on Thursday.  She has 2 appointments that day so hopefully they come up with a better plan then what they are doing right now.

She only goes to the drs & then back home due to the flu & colds going around. Its harder for her to get rid of a cold then the normal person. Plus it takes more out of her then a normal person.

Will up date on Thursday as soon as we get out of drs. Hope everyone has a good week.

Cold weather is here & we are not ready

Hi Everyone. Hope everyone had a great week. The weather is getting colder. Calling for snow here in Tennessee. We both moved down here to get away from the snow. For the 1s who don't know Jody lived in TN before me. We grew up 3hrs from each other in NY but never knew each other. We met here in Knoxville TN.


We are both so not ready for this cold. 1st it ups Jody's pain level a lot. 2nd out furnace still is not fixed all the way. Will cost to much $ to get it fixed and right now with medical bills & medications cost we don't have it. This is what I learned this year about furnace & heat pumps this year, We don't have heat pumps in NY so this is new to use. It takes Freon to run the heat pump, I didn't know that. So the Freon is out so to run furnace it has to be on emergency heat which it raises our electric bill a lot. Cant afford a high bill this year. 3rd still haven't had the $ to fix the heater core in truck yet. I will have to figure something out before Jodys next drs appointment. She will not be a happy camper with no heat in truck plus her pain level will go up real high.


Jody has been doing the same. Just waiting for the 13th of November to see what the drs have to say. The 1 pill she has been taking I can tell is working some. It doesn't take her depression away but has taken her mood swings away. I know that might have sound bad but it wasn't meant to. I love her no matter what. Just with everything going on with her body I think it messes with her hormones.


She is still having issues with keeping food down. Still no change at all there. Wish she could eat & keep it down. There is times she wont eat at all that day & night. Which makes me feel bad eating in front of her.


I go the 10th to the eye dr to get pressure in my eyes checked. I went without eye drops for my glaucoma for awhile due to not being able to afford them.
We had to go the er a couple weekends ago  due to my left side of my face (just the left side) from the top of my head down to my throat has been numb. Its really weird. Anyhow they did a ct scan due to the brain bleed I had during my car accident a couple years ago they were afraid it had come back. But it showed no bleed only the dead spot that's there now & no stroke. So that's good. They said it sounds like bell's palsy. It should go away after a couple weeks. Well it still hasn't gone away. It doesn't hurt just really bothers me. I don't dare to shave either as I am afraid I might cut myself due to it being numb.


Well I am getting off from here I have to get back to work. I hope everyone has a great Halloween & be safe out there.

Biopsies are back & we have some updates

The results of the biopsies are back & of course does not show anything.  I think Jodys weight gain is from the Polycystic ovary syndrome (PCOS). We will find out next month at the drs if they agree with us on the Endometriosis being back. But as far as her not being able to keep food in her I really think its because of the Adhesions disorder. Which as we have learned there is nothing they can do for it.  So that means this will be something she has to deal with the rest of her life. Which sucks.


 A friend suggested we keep a log of what she eats & how it affects her. Its just that  she can eat fish 1 time & it be ok but if she try's to eat it the next day it will come up or go straight through her. That's how it with all the food she eats. We think we find something that's going to stay in her but then it doesn't. So we will try to keep a log as far as what she eats to take to the dr maybe there's something we are missing.


We have been looking into starting a organization for Adhesion's Disorder or as a Chronic Pain to cover Adhesions, RSD & Fibromyalgia. To be able to get it started it will cost$600 for all the paperwork & filing everything. I am looking into how to raise the funds to do this. There is many others that can benefit from this. Even if its help paying for a medication that they need but cant afford, buying a heating blanket or pad to help them stay warm & ease some of the pain that they are having.  Or even sending a card or small gift to them to say hey you are not alone. I will keep everyone updated on what is going on with it as I get more into it.


I also want to share a GREAT Friend of ours who is the owner & also makes all the jewelry herself of Box of Pearls by Amanda has made a necklace for Adhesion Disorder Awareness. You can go here to purchase it Adhesion Disorder Awareness Necklace. It turned out great.  


 

Its cold here

Hi everyone. The weather is getting colder out. Which means mowing season is coming to a end. But I hope to be doing leaf removal and trimming bushes. I am looking for other work also due to pay will be going down. With all the medical bills we have to pay I need to work. We are still waiting for SSI to give us a answer. With just that extra income it would help a lot. So if anyone knows of any kind of work around here please let me know.


As far as update on Jody goes, nothing new to report. The cold weather is affecting her a lot, causing more pain. She spends a lot of time in bed due to the pain. The heating blanket I got for $50 off from craigslist was a great buy. She uses it a lot. I am not for sure who likes it more though her or the dogs lol.


We heard back about genetic testing. There is a 6 month wait plus before we can do it we would have to get copies of her 1/2 brothers results. So we will wait & see what happens.


Not for sure what to do. Jody eats & I know they say its supposed to take so much time to get to your stomach and intestines but as soon as Jody swallows its either the pain starts & it comes back up or she is running to the bathroom due to it coming out the other way. Food just doesn't want to stay in her. We have tried many different things & nothing seems to be working.


We have came to the conclusion also  that the endometriosis is back. Which is not a good thing. We have talked about having everything removed but due to more adhesions really don't want another surgery. We are both torn on what to do there right now.


Well I better get back to work so I can pay these bills. Hope everyone has a good week. If anyone has any ideals of stuff I could do from home or after my 1st job please let me know. Thanks

Not a good day

I know the rain & cold has some to do with Jodys pain but her stomach is also hurting.  I hope we get some answers tomorrow from the biopsies.
I know shes going to kill me but had to add pic from when she went in for the scope

Where do we go from here?

Hi everyone, Sorry for late update. Its been a rainy weekend here which means no work for me and it also means more pain for Jody.
The scope Jody had done on Thursday showed nothing. We are waiting on 2 biopsy's  which will be back on Thursday this week. But Jody has been depressed more since. She just knew that's what they were going to say. We keep going in for answers but come out with nothing.
Jody does have 1/2 sisters &  1/2 brothers who have been having medical issues also. She is the only child from her parents 1st marriage so it does make it hard to figure out medical. She has 3 sisters from her fathers 2nd marriage & has 2 sisters & 3 brothers from her mothers 2nd marriage & a sister from her mothers live in boyfriend. So as you can see it makes it hard to figure out medical history. It does seem like she follows her father side more.


We have been in contact with UT Medical Genetic testing center. Jody's mother  suggested she contact Boston Medical where her 1/2 brother has had genetic testing done & has showed something but don't know what but its a rare thing. Sorry wish I knew more. But it is impossible for her to travel that far. So our hope is here with UT medical. Its where all of her drs are anyhow.


We have changed some things which seems to be working for now. I have tried in the past to get her to drink  ensure when she couldn't keep anything down but she didn't like the taste of them & wouldn't drink them. Lol it was like getting a child to try something new. I love her to death don't get me wrong but sometimes she is a handful lol.
I decided to buy her the special K drinks. Lots of different flavors & I hope they were better tasting then the Ensures.
It seems they are she does like them & they stay down better then food does. Which is great. But for how long will this work for? It seems when we find something that works it works for awhile then stops.
Jody has never been a big eater. From what I have heard when growing up she would rather eat vegetables then meat. When she was a baby she was allergic to milk which she still doesn't like to this day. She would also rather eat salads or vegetables today then meat.
We have gone gluten free a couple years ago. And yes I do sneak my doughnuts in when I am at work lol so she doesn't see. But we don't drink sodas, we don't fry anything, we hardly ever eat out & we don't buy junk food. We eat healthy.  I wanted to throw that in there due to some have said it could be the way we eat.
Well I hope the rain stays away this week. I need to work to be able to pay bills. This rain is making it hard to work and pay bills plus with all of Jodys medical appointments it is making it hard to work.
Just another thing I want to throw out there for the ones who doesn't live in TN. Here in TN there is no help for people that have no kids living in the household or if you don't have a certain kind of cancer. It sucks. When you help others but when you need the help the 1st thing people will ask do you have children in the home? No we don't but why should we be punished for not having children in the home?
Heres another thing we have found here in TN. Please don't get me wrong we love TN but it seems if you don't fall in certain categories you don't get help. Do you do drugs or drink? No we don't drink & we don't do drugs. So if we had kids living in the household, & did drugs the help would be pouring out of the woodworks.
Do you go to church? Yes we belong to a great church but due to the fact I have to work side jobs or make up hours I miss for appointments we just cant make it. Plus its that time of year where everyone is getting sick & with Jodys immune system down we cant take the risk of her catching something. We do miss going though.
Are you homeless? No we have a house now. But for a long time we had lived in a motel due to a accident I was in. We made it home yes but it was hard. Again when we needed help there we heard the same thing. Do you have kids living with you, do you do drugs or do you drink? Oh you don't have any the above sorry we cant help you.
And no it wasn't just social services that said this. It was churches, charities & others. 


So what am I getting at you might ask. Just because people don't do drugs, drink or have no kids in their household doesn't mean they don't need help.
I am a hard worker and try my best to pay our bills and do the right thing. But there are times where we sit here and think if we did do drugs we would get the help.
If you know of couples having a rough time help them. Even if its taking dinner by, a box of food or even buying a gift card to either a store, electric companies even have gift cards now.
We might be having a rough time but we still help people. We always have. We might have a $1 left but someone we know hasn't eaten we give them that $1.
We know many who have kids living in household, who does drugs & drink & live better then we do. There are also a lot that know how to lie to get what they want. That's not us. Just think people about the ones who are living the right way & trying to do all the right thing do need help also once in awhile.

What to do?

Jody had the scope done today. Her throat is a little sore but she is doing ok. She is depressed but who wouldn't be.
The dr didn't see anything said everything looked good but did take a couple of biopsies which will be back in 7 days. Jody said shes not holding her breath.
Where do we go from here? Anyone with any advice? She cant keep eating then be in pain after or throwing up everytime she eats. Something is causing it. But what?
Who do we go to? What do we do?

Rain rain go away

Rain has been here the last couple days. Even had hail yesterday at our house. For the ones who have RSD you know how bad the pain is when it rains & starts getting cold out. Jody has been in alot of pain the last couple of days. She is still not sleeping all through the night. Her stomach hurts. She told me if the dr comes out Thursday & says he didn't find anything to tell him to go back in. I wish I could do something for her.
There's not alot of help with people with adhesions so I am thinking about starting a nonprofit organizations to help people with this issue.  Any thoughts?

Update

Just wanted to take a second to update the page. Jody hasnt had many good nights. She isnt sleeping well at all. The pain is waking her up. I wish I could take her pain away.
Got a almost $200 electric blanket off from Craigslist for her for $50. Now have to get her a couple electric throws for around the house. But thats going to have to wait. I still have to replace the heater core in our truck. Just haven't had the $ its over $100 for it so I have to do something due to its getting colder outside & I need the truck to be heated for her.
I didn't realize how everything adds up so quick.  Plus we have the holidays coming up & her birthday.  I just dont know what I am going to do.
Well I have meatloaf cooking so need to go check on it. Will try to update more later this week. Jody goes in Thursday for scope

Ssi

Well wad going to wait to write this but it kinda makes me mad. They have already made a decision on jodys application for ssi. Due to how fast it was we dibt really need to wait for the letter, we know she got denied.  We have appointment in the morning with a lawyer.
Here's why I am mad. If Jody was a drinker or did drugs they would of approved it right away but cause she has a real medical problem they denied her.
Sometimes I feel if we lied, cheated, did drugs or steal we would be in a better place.  But thats not who we are. So we get screwed once again.
We have helped alot of people out over the years but where are them people now when we need help? We can't eben get help from the state due to its not cancer & we have no kids. What bull.
I guess I am done ranting for tonight hopefully tomorrow is better.

New medicine

Well Jody started new medicine.  I guess its doing what its supposed to cause she has been tired more and cant keep anything down.she is eating ice pops so liquids are going down her. I will update a couple times a week.
Well got to get back to work $ doesnt grow on trees. And hey if you are in the knox county tn area & need some landscaping let me know. Always looking for new customers

We have some answers

What a week last week was. We did finally get a some what answer as what is going on from Jodys drs. We also have a treatment plan now.
So this is what we have so far:
1) RSD
2) adhesion's
3) endometriosis
4) arthritis
5) fibromyalgia
6) PCOS
7 )copd


so what is the treatment? Right now she is taking


1) duloxetine
2)levisn
3)Lioresal
4)hylands restful leg
5) melatonin


Tomorrow  I have to pick up a new drug for her. Not for sure the name yet
Will update more tomorrow  when I know more

That word

That ugly word CANCER. Did you think about it? how you felt, how you treated someone else with it?  Let me first say Jody doesn't have cancer. I just want to get a point across though.
I will update on Jody's new diagnose in another post.


Cancer no cure. Well there's a lot other medical conditions out there besides cancer that causes death, spreads to other body parts, and that have no cure.


For 1 Endometriosis, did you know it can spread to your lungs, your arms, your legs. I am probable leaving out more but you get the point I am trying to make.


2:  RSD spreads through the whole body. Some have killed themselves due to not being able to take the pain no more . no cure for it either.


3: Fibromyalgia, no cure


4: Lupus no cure and can spread through the whole body.


5: Adhesions no cure and can attached to everything.


Just the 5 listed to can spread through the whole body and can kill you 1 way or another. So next time
you hear some say they have something read up about it, learn about it. Just cause its not cancer doesn't mean it doesn't act like cancer or there's not even a cure for it.


People who have stuff like I have listed are dealing with a lot of pain on a daily basis. Their lives are turned upside down. A lot cant even work anymore.
We have a close friend who is more like a sister to Jody then a friend, who has RSD and has had it for years. I am going to ask her if she would write about what she goes through everyday and what she has dealt with. So you can see its not just Jody dealing with some of these issues there are others out there too.
If you have questions ask, just cause you don't hear that word cancer doesn't mean these people aren't hurting or aren't really sick.

We are off to see the wizard

We are off to see the wizard the wonderful wizard  of rheumatology

A word for everyone

I will explain more this weekend but I want everyone to think about 1 word. That word is CANCER. Any kind of cancer. Just think about what you know about it from experience or from seeing someone dealing with it. How you feel when you found out you had it, how you felt when you learned someone else had it. What did you do or didnt do.
Please dont take more out of this then it is. I just want everyone to think for a minute about it.
Check in on Saturday as to why I asked you to think about it the word CANCER.

As good as it gets

I guess right now this is as good as it gets.  Jody was able to keep food down Friday but then Saturday she was sick again & in bed all day. Sunday she was able to keep food down so I say today she shouldn't be able to if it keeps up with this pattern. 
I hate this for her.  I wish I could do something.  She says her stomach hurts when she does eat & while shes eating. Hopefully we find something out on the 26th at the rheumatologist.

Er visit

Last night I had to take Jody to er. She was unable to keep anything down since friday which was not good at all.
The CT scan with contrast that was done on Wednesday was looked at again and shows nothing.
The drs are leaning towards everything is caused by the adhesions which is not good at all due to there is nothing to fix them.
The er was great with her last night. They gave her 2 bags of fluids & 3 kinds of meds to stop her from throwing up.
When we got home she went straight to sleep.
I will try to update more this weekend I have to head to work. Hope everyone has a great day.

Update

Saw GI dr yesterday he wants a ct scan with contrast done today & then a scope down her throat on the 9th of October.  In a way I am hoping they find something today. If they dont find anything it means its the adhesions causing all the problems. 
Jody hasnt been able to eat since Friday.  Every time she moves she is getting sick. She said her throat hurts from getting sick. I wish I knew what to do for her. O am lost right now.
Will update later tonight.

Not a good day

Jodys having bad day today. She cant keep nothing down. Hope it goes away soon or we will be at the er getting ivs

ARD