Rheumatoid Arthritis Remission

These are the pills I take everyday, Starting from left to right: The big round one is a chewable vitamin C, the orange one is turmeric and bromelain - this is an anti-inflammatory. I actually found that the bromelain is necessary for me. Straight turmeric just doesn't cut it. The long oval white one is pantothenic acid- this is also an anti-inflammatory and it's used for morning stiffness and aches. Next to it is zinc and the last is vitamin D3. When I first started taking these I stopped the ibuprofen full on. I read that even though doctors know that NSAIDs not only kill pain but muscles, it is still the highest prescribed drug for these types of things. 

I will tell you, when I started taking these pills, I was hardly able to stand. I was spending my days in my recliner and I most literally didn't even want to breathe for fear I would move a vein or muscle. It hurt just to be. It hurt in my sleep, it hurt when I woke up. I dreaded standing up and boy did I dread the toilet. Movement became like some awkward painful dance. 

So, I did some research and decided "what the hell!" I mean what could it hurt? I was desperate and I wasn't getting any better. My inflammation was so bad that I couldn't bend my fingers unless I used my other hand to do it.  I noticed the effects immediately. But I still was in an incredible amount of pain. I was trying to go cold turkey on the Motrin. But I couldn't so I just took one 200 mg tablets 2 out of the 3 hellish days.  I almost didn't think I was going to make it. I was also taking Cat's Claw for pain, but I can tell you that didn't help me much. 

The immediate effects I noticed was a huge decrease in inflammation in my ankles first, then my wrists where I had huge knot like bumps.  Then my left knee and lastly my right knee and fingers. The pantothenic acid was working in the mornings. Don't get me wrong, it still hurt but this was a different pain. 

I had muscle pain: shoulders, knees, ankles, arms. Oh and in my fingers, especially my thumbs of all things. I would not take anything for it, because I realized muscle pain is something I could deal with compared to inflammation and I figured the stuff I read about NSAIDs must've been true. 

Within the first week, I was up and around doing stuff. Of course, I over did it. But as long as I could keep the inflammation in check the pain was bearable. I was and still deal with the mind-numbing and mysterious (to me) fatigue. I almost want to call it a mental fatigue because everything feels fully drained out and empty, I even have trouble getting my body to breathe. I just feel so.tired.

I still have my days and mostly it's my own fault because I forget my pills.  I have trouble swallowing pills and I was drowning myself to get them down only to throw them up. I started spacing them out.  I take the turmeric and bromelain first because it's the one that I noticed I really need. 

I still have mini-flares. I don't even know whether to consider it a flare up because it seems so minor in comparison to where I have been.

This picture is from yesterday. You can see how ugly my knuckles are now and you can also see the swollen finger. Sure it hurts but nothing like before and again, it's my own fault because it was two days without pills because I had completely forgotten. I know, how can I forget something like that?

This is a side view where you can see my fingers are actually starting to go in different directions. I'm sure there is probably some kind of jargon for this crap. My hand is also strangely wider. I don't remember my pinky being so....so...separate. 

This last picture is a view from above. This is how my fingers lie "flat" now. I wish I would've taken a picture when it was clawed. It was almost lopsided-spider-like and very scary.  

Right now I am in "mild" pain. My feet have the same issue as my hand and both hands have slight swelling in one finger. But it is only painful to touch it and I can deal with that. Especially after all I accomplished yesterday. 

I did a lot of sorting and wiping down stuff for homeschool. At one point I was kneeling over the tub to wash some oversized plastic book holders. I knew I was going to pay for it, but I wasn't expecting the extra "ass-like" lump that formed later last night on my thigh near my butt.  The lump is still there but the pain is almost gone. 

So, I'm not pain free or symptom free but I can deal with this. At first, I thought "HEY! I solved this!" and that the RA was gone but then it hit me like a ton of bricks that it will never be gone and this is what people call remission. That was hard to swallow. Really hard. 

Just to get this out there. I am not being paid for any of this. I have never formally been diagnosed and I don't have medical insurance.  I'm not the only one to have RA in my family and my symptoms are right on. I suppose I could have myself diagnosed but I am terrified of the whole pre-existing condition thing having seen how Hubbin's has been treated because of his quadriplegia and I don't want to be on injectables or any of those other drugs that seem to only make people feel worse instead of better.  I've made up my mind about this thing. I have kids and Hubbins to take care of but some day I won't and if I am going to be all crooked and unable to do the things I want, I will just check out.  I'm a wuss like that. 

Less Than Human

I don't know if it's just me, or if it's the town I live in or hell, maybe even the color of my skin and the trail of kids behind me and all those stereotypes that go along with that... but just in case I didn't go into it before, the oldest has what is called a failed root canal.

Now I think all of us who adopt get some form of medical assistance until the child reaches 18. My kids get  Medi-Cal if they were ever to live in California. In my state all kids under 18 are covered under Medicaid. So my state picks up the bill for my kids. However, I was pissed to find out that in the event of a failed root canal, no other dentist will touch the tooth because Medicaid won't pay.

So, here the oldest sits with an infection in this failed root canal because they left the tip in there and NO one but the jacked up place I refuse to take her back to will touch her. Except, I found one dentist who was willing to give her antibiotics. She was on them for 10 days and it seems to have done the trick for now.

Usually, it takes months to schedule my kids in. This place seemed to be ok. At least, I thought it was the place but, today came to realize it was the hygienist we had, not the place.  Anyhow, I digress... the nice woman at the counter said she could get the oldest in for a cleaning the day after her antibiotics finished so that they could also check up on her tooth situation. I said "sure!"

Now, I can't remember if I blogged it or not, but I just dropped a chunk of change to get my own teeth cleaned and looked at because my wisdom teeth are impacted. I was not treated anywhere near like they were. Sure, I paid cash... but this place was fabulous. It was a pleasant experience. I chatted with the staff, they admired my wedding rings. It was like visiting old friends and I only had been there that day. The follow up appointment was just as great. Seriously, I've never been treated the way Hubbins and my kids have been treated. Ever.

Fast forward to today, we get a hygienist with a thick accent, the office is overflowing this time with tons of screaming kids. There are only partitions separating stations no closed rooms. I have hearing loss. When it's loud like that, I can't hear the person in front of me and I try to read lips, but this was difficult. I was about to tell the hygienist that when she totally blew me off.  I just thought, "whatever."

She's working on the oldest and I'm thinking "Holy hell! They didn't practically rip my teeth out like that and I hadn't been in 5 years!" Mine was a deep cleaning the first time and the second appointment was a regular cleaning.  I do have to struggle a bit with getting the oldest to take care of her teeth, but there's also the decade of abuse and neglect. She has the worse teeth because by the time I got her most of her permanent teeth were in and the damage was done.  To me, the fact that she had no new cavities was a victory.

By this time, the loud kids in the next area had left and I heard the hygienist tell the oldest it was her fault the cleaning was so rough. This pissed me off.

When she was done the dentist came in and I asked about the failed root canal. I asked if it would be prone to infection because the tip was left in there. He asked me what I meant by "prone". Uh...yeah.  You know, more likely to get infected than if the tip wasn't there? Is this something we should have fixed or was this a fluke? Then he asked me "fluke?" So instead, I asked about braces. She hadn't lost all her teeth. She had like two left and the other dentist suggested that she would need braces once she lost those teeth. I asked if all her permanent teeth were in, he said yes but told me she was fine. I said "really, because the other dentist said she would need braces once the other teeth fell out." He told me Medicaid wouldn't pay for it and that she looked fine.

Hmmmmm.... I don't recall asking who would pay for it. The other dentist had already told me about $4000 is what I should expect to pay at least. When I had spoke to him last about the failed root canal, my point was that the job was done shitty and it should be fixed and she should be able to go some place else and not back to the place that jacked her up. Medicaid should get their money back from the cracker jack I took her to before. (BTW, her godmother told me it was a great place and I took all my kids there once and never again. SS left with bruises on her face and she wasn't even resisting. They were trying to make prebuilt caps fit that just didn't.)

I had it. I had the dentist and the hygienist in there and I said "Look, I'm not happy right now because of something she said to my daughter and what I am hearing now. I have adopted my daughter. My daughter has been through a decade of child abuse and neglect. It is NOT her fault because her parents didn't do what they were supposed to and I'm tired of people like you making assumptions and saying things when you don't know."

I got an "Uh, ok." from the dentist. No apology to my daughter. Nothing. Then the dumb bitch had the audacity to ask me if I wanted to schedule her next appointment.

I said "No thank you." and we walked out. (yes, polite to the end, aren't you all proud. After all I am setting an example for my child.)

Seriously.  I'm not on welfare but even if I was, how the hell are you going to treat the people that make you able to live your life, you know: buy food, clothes and shelter for yourself... how are you going to treat them like shit? I understand that there are some people who take advantage of the system (like the kid's egg donor) but then again that's why the kid's teeth are the way they are...because they DON'T take them to the dentist and don't use the insurance, they just collect the check. Duh.

In my mind, if you have a person in there with their kid, you are probably dealing with a person who is using the system the way it was intended to be used and with these economic times... it's probably not a rare thing. And most certainly in our state, where all kids are covered it shouldn't be rare.

Maybe I do have myself up on a pedestal and maybe I should be "grateful".  But if we want to play a who's better than who by education and income/status... well... I think they'd be surprised.  I don't want to play that game. All I am asking for is to be treated like a human being and the same for my kids. Common courtesy and respect. That's all I am asking.

Is it too much to ask for?

I had a hard day...

Some days, I find it hard to believe this is my life. I guess it's not a bad life. I just hate that the kids donor (that's what I'm going to call that C U Next Tuesday from now on) has had so much control over my life. Even with her not physically here, she's ruined my life in terms of what I wanted out of my life.  My wedding, My home, My car, My own bio kids. It builds up when I start to think of all my life I'm losing because she screwed up her life (queue tiny violins).

I know everybody works hard at life, but that's all I had done.  Hubbins and I were barely starting to make a little savings and home for ourselves so we could do things when all this happened. I had been putting myself through school since I graduated HS and never took a break.  We had both just graduated. I truly hadn't done anything with my life. I walked a straight line in accordance to the law of the land and God's laws. Life was just starting for us. It's so hard. Especially if you could understand the lengths I went to so that I wouldn't end up in the situation I am in. (Not the adopting part, but the million kids and financial issues, etc...) This was their family cycle, not mine.

It doesn't help when I get treated like I'm the piece of trash who made this mess.  I've been trying to get a restraining order served in another state.  I got a temporary one, but today I panicked when I found out AZ wants a $100 deposit and if it goes over they will bill me. I tried to get a waiver, because let's face it. This past couple of weeks my budget has been stretched and it will probably be tight next month do to the addition of two more people. I had to get my grandma setup here. That's not a complaint, it's just the way it is. I know with this restraining order, I only have so much time to get it delivered.  It just so happens that it's also time to fill CDQs $200 prescription that her insurance won't cover and to get our registration on the car renewed, not to mention we got our home tax bill.

Az only serves restraining orders for those in a dating relationship for free. Everyone else must pay. They have a waiver for in state only. I called our clerk's office and the first time I got a really nice woman who was trying to understand why Arizona would do something like that. She thought it was odd. She suggested I call the local sheriff's office and see if it could be faxed and if not call back the clerk's office so that I could talk to someone regarding that in their department because like I said, she didn't think that seemed right.

So I called the sheriff's office and they couldn't help me. So I called back the county clerks office.  I got someone else. I think I know who she is. I think she's the bitch that I had to deal with to file the thing to begin with.  I call her a bitch because she was put out that she had to lift her ass from the seat and go ask a question, since I wasn't a battered woman case.

I told her I was speaking to someone else and she just left it in silence, so I started to tell her what I was trying to do, and that was simply to see if there was any kind of help available to me, should I not be able to either a) pay for the service or b) get it served on time. She cut me off and told me there was nothing they could do. When I told her the other woman said there was probably someone I could speak to about my unique situation, she told me it "wasn't their problem". I told her I was trying to protect my children from their abuser, I told her I had adopted 5 children and that kind of made it hard to do things sometimes. She told me that was my "personal problem". I hung up before I told her to go fuck herself and then I cried out of sheer hatred and anger.  I know some people will think this is wrong but that bitch needs to be slapped around a couple of times. This is the job she chose, maybe she needs to understand some things and since it's obvious she's heartless with a huge and I mean HUGE stick up her ass, maybe she needs to feel what it's like.

I can't help but be pissed that I'd have to be screwing someone and get my ass beat to get my restraining order served for free. I mean really?  I don't doubt that some people need help. But why do people who make bad choices get all the breaks? What about us, the ones who are trying to do the right thing? Why do we get screwed every time?

So, now, I will wait until my payday at the end of the week and hope that will be in time for whatever deadlines there are. I'm angry because this is for the safety of my children and it's like "oh, well. You shouldn't have adopted or got involved. We aren't."

Protect and serve my ass...

Finally- Wound Vac Post!

First, I apologize for not doing this much sooner. I know I have quite a bit of traffic from people looking for info regarding tunneling pressure sores...so, without further ado:

Hubbins has had his sore for a year and a half. It was a very tiny sore that tunneled to about 5 cm, which made it not so tiny anymore. It started originally from an old pressure sore he had from decades ago. It reopened here after a new supervisor took it upon himself to try to save the state some money and changed his seating foam.

Anyhow, Hubbins is off the wound vac for now but it looks like he might have to have it put back on and I will tell you why, but first. Like I said, this wound has been on going with no movement after it reached 5 cm for about a year and a half. In about a month the wound vac had closed it to about .03 cm.  He had the wound vac off for about a week before he tried to sit in his chair, there had been no change to the wound. But the day before yesterday he was up in his chair for about an hour for dinner. This started the sore again. As we know, once the skin is compromised, well it's never as strong and we still haven't found the source of pressure which is frustrating.  I've irrigated and cleaned the sore and when the home health nurse comes out we will ask her if the vac should go on. This little machine is a miracle worker.

In the meantime, I was going to take pics and post it. But Hubbins sore is on his bottom. Then I remembered we had come across this video when we were doing research on the vac. This seemed to be the best to show what was what and yes the woman isn't wearing gloves but when you trust your nurse and there are protocols and handwashing, it's just easier to lay the drape and do the wound care that way because of the dressings, etc... Really, I am very conscientious about glove changes, especially when it's other people, etc... but the point is to see what the wound vac does and not judge the nurse who obviously did her job without complication for this boy.

There are many other videos and the wound vac doesn't work for everyone. Sometimes the skin is too delicate. I'm not getting paid by the wound vac place or anything for this. I just wanted to let people know that it is wonderful. We would have had the vac put on much sooner if his doctor at the time wasn't nervous about it because she didn't know about it. But she moved out of the state and his new doctor saw no problems with it. The wound measurement days were so exciting, especially at first because it moves so fast. Then there comes a point where it just stops and that's when you have to test out the waters to see if the skin is really ready.

There are actually plenty of videos on youtube for the wound vac. Some aren't so good, some are very graphic as pressure sores can be ugly.  I love this little machine and I will update again on whether Hubs has to put the vac on again or not. If any one has any questions, feel free to comment and I will answer what I know. lol!

Thanks to the guy who did this video and shared with people, I hope you don't mind me passing it on. It's one of the best out there for demonstrating the wound vac that I have seen.

one-three-one!!!

That was my grandma's blood sugar Saturday morning.  Steadily going down. I had another post in the works but I guess I lost it even though I had saved it which is a little troubling to me. It's troubling because I was trying to document some of what has come to light.

So I'll try a quick recap, About a week ago today my grandmother ran out of her memory meds.  We weren't able to refill being a Sunday. So she went the day without the pills and just the patch. Well, last Sunday night it hit the fan. It was like a fog was lifted for my grandma. She had lucidity and it was scary and exhilarating at the same time. Scary because I didn't know if the lack of pills was causing this or if it meant that the pills had been causing her haze.

What I can tell you now is that she's had about two fuzzy moments without the pills and both times she was pretty exhausted.

Anyhow, her moment of clarity came two days after my grandfather wiped her accounts out. Last Sunday night she was a-n-g-r-y. Like old days angry but amplified by the fact that she actually used the D-word (Divorce) which she's NEVER done and she spoke of my mom's bio dad who died when my mom was 3 or so. This was monumental. I mean she was talking about property that she owned and the  atrocious things my current grandfather has done to her.  She said when my grandfather takes her places and if people try to talk to her he tells them she doesn't know anything any more and she's lost her mind and not to talk to her.  He threatened her that if she left to visit me, he was going to bring another woman into the house. I mean some really awful things.

I've known he is an a-hole for decades but I didn't know just how low he has sunk. My grandmother doesn't want to go back. She said he sold their house to the bank and if something happens to him, she has to pay $817 a month to live in that house.  I mean so much was said. It was truly like a cloud lifted and she was herself again.

I'm trying to figure out a way to get her a better insurance plan out here because something is wrong. I'm not 100% positive but I think her daughter I wrote about in my backstabbers post may have been lying and had her diagnosed with Alzheimer's to keep her in check.  I don't even know if that is possible, but my grandmother is doing so much better without those pills and the patches. Plus,  it turns out that same daughter has been the only one taking her to this doctor and had the whole thing set up AND she claimed my grandmother had to be back for an appointment with him this past week but when my mom called to reschedule they said there was never any appointment for this past week or any future appointments. Go figure, huh? Shady bitch... when I get my grandma insurance here and if I find out she was doing shady things...she better watch out because I am soooo turning her in.

Apparently, my grandmother was allergic to the patches as well. They were leaving big red welts and peeling her skin around the edges.  Part of an allergic reaction. It was more noticeable now that she is bathing regularly and was having the patch changed daily as it should have been.

I get so nervous.  My grandmother has been known to sway.  She gets scared and she backs down and changes her mind about things.  I get nervous to put myself out there because I know there's that possibility that she'll throw me to the vultures again.  This time is sort of different. She's used some very strong words that she's never said before.  She was really unhappy and tired of the abuse.  I don't blame her but I don't know what changed this time around. But then you know crying wolf and all that...

She worries about her youngest son who is in his 40s. In a way, I understand, but the relationship seems so twisted. The cord needs to be cut already and he needs to grow up.

Anyhow, Friday we took her out to the mall where she spent herself silly and bought things she didn't need.  We went to Sephora and she had a blast, she bought some stuff from the Holy Land store. Then I took them out to Chinese for lunch and we shopped for new shoes.  We stopped at Bath & Body Works and I bought us a couple of things.  She was wiped out. As we were leaving she stopped at the jewelry counter and spent the last of the little money she had left on a jade elephant gold necklace for good luck.

My mom was hesitant for my grandma to spend all her money like that. But hell she only had under $250 left in her accounts and I asked my mom when she thought the last time my grandmother was able to frivolously spend like that? So she let it go.

I could tell my grandmother was happy to be using her own money. I wanted my mom to drop it. I have bought all the essentials she needs. Food, clothing, etc... so why not?  Let her have fun. If any of them have a problem, they need to leave my mom and grandmother alone and see me.  Because it's just redonkulous, it's her money dammit. She should be able to pamper herself. She earned it.

When we got home, I saw my grandma sitting in her recliner. She had pulled everything out. She touched the rosary bracelet she bought and turned it around her wrist as she held her arm in the air admiring it. Then she reached to her neck and clutched her elephant necklace. Smiling the whole time. She took out her lotions and make up and lined them up.  It may sound silly but I wanted to cry. Those things clearly mean something to her.  I don't want to talk like she's dying or anything but I'm glad she got to do that and I hope she gets to do it more often.

I guess I feel like I have limited time before they take her from me and kill her back home. Her kids keep pushing with what seems like no regard for her or her health or even her happiness. I figure eventually she will cave and leave. It makes me sad. But I will try to give her as much as I can while she is still here. I will try to make sure she has as much fun as possible and I will try to be sure she is happy.

It's all I can do.  I wonder if this is how she felt before my mom took me back when I used to live with her.

PS. I know her hair looks like she put her finger in a socket. She's funny because she thinks she's fluffing it, but this is the way it turns out. My mom had done it for her before we left and it looked nothing like this. This is her with her new Sephora look, see how she's working it? LOL!

Happy Father's Day

to the greatest father and husband in the world.

You have embraced my family like I could never imagine. Jumping through hoops to get the kids here and settled when all those bad things happened, even though it meant our money was spread thinner and our chance for biological children of our own ticks away year by year. You still say everything is going to be ok.

You've fallen into the Dad role beautifully, learning to speak incorrectly like the children (;-P) and sharing tales of when you were their age and the crazy things you did. I look forward to SS's annual "SUPER DAD" song and presentation today.  You know....there's no "Super Mom" song...so you're special. LOL!

You are making such a huge impact in their lives and I don't think you even realize it.

You embraced my mom moving in and even call my Grandmother, Grandma. I loved you even more as you sat with my Grandmother talking about recipes and whatnot.  You endured spanish television and even got into a novella or two yourself in the short time she has been here.

You help me to make sure they eat the right things so that they can get back on track and healthy again. You endure the things that they do because they are obviously comfortable in our home and you make them comfortable.

You make sure that I get something to eat or that I sleep and take care of myself. You sacrifice some things because I can't always do them for you and for the most part you understand or at least try to understand.  You give me anything and everything I want just to make me happy. Sometimes you drive me up the wall but it's nothing I can't handle. I'm sure the feeling is mutual.

More recently, I realized the difference. I mean, I know there is a difference between our relationship and the cycles of my family. But having my mom and grandmother here reinforced in my mind the difference. You see when I lost the receipt for the shed and they would only give me a store credit, I called you and you told me it was ok and not a big deal even though I was way harder on myself for it. You see, at the moment it occurred to me if it had been my mom or my grandmother, they wouldn't have called their spouses at all because in their relationships the men have always yelled at them and called them stupid and worthless for anything they did wrong.

My mom heard you tell me "It's okay Sweetie."  She told me I was very lucky.

You have been through so much. You endure so much pain day in and day out. You are stronger than you think you are. When I tell you I couldn't live the way you do, it's not an insult. It speaks to your strength because I am not as strong as you.  I wish I could take away your pain. I wish I could make things easier for you the way you do for me.

You are the core of our family. I might do all the physical stuff, but you keep us together emotionally and mentally more than you realize.

Happy Father's Day Sweetie.

We Lub U!

The Great Gummy Bear Scuffle

So, both my mom and my grandmother's blood sugar has been dropping pretty rapidly, or at least it seems. They both seem to be craving sweets more too.

I thought it would be a good idea to take my grandmother to Sunflower Market so she could walk off her breakfast and do some shopping. I was already going there, so why not?

Holy moly people, I was speechless and I will tell you why.  I was looking for sweets they could both have.  My grandmother picked sugar free popsicles and my mom picked sugar free gummy bears.  I told my grandmother she could have a popsicle in the car on the way home because it was also a hot day.

So my mom gets my grandmother her popsicle while I am loading the groceries and my grandmother's walker in the car. My mom also takes out her gummy bears (which I've found out are bad for them).  I didn't realize my mom had given my grandmother her popsicle already until I went to shut her door. There was like a bite left. Grrreat!!!

Now imagine this if you will. My grandma finishes her popsicle at the same time my mom asks me to open her gummies. I open them for her and pass them up ( we went in my mom's car and they were in the front and I was in the back.)  She takes two and my grandmother asks her for some. My mom tells her no because she just had her dessert. Meanwhile, we are still sitting in the parked car in the parking lot and I am putting on my seatbelt.

Next thing I know, my mom tells my grandmother she can't have anymore. Apparently, she held it out for her to take some and my grandma thought she was going to take the tub. So my mom starts to pull it away and my grandma grabs a fistful. My mom grabs the lid and tries to put it on while my grandmother yells at her she can have some if she wants and she will....

Um...WTF? This scuffle took like 30 seconds but it felt surreal.

I'm just sitting in the backseat speechless until I found my senses and told them to give me the frickin' gummy bears and neither one of them can have them. I get the container passed back to me and put the lid on.

My mom is grumbling that it's not fair because those were hers and my grandmother already had her dessert and my grandmother is munching on the gummies she took laughing.

Let's just say they didn't talk to each other the whole way home or for a couple of hours later.

Ahhhh, silence *chuckle*

I felt like telling them "I can't take you two anywhere!"  or  "If you two can't behave you can't go to the store anymore with me." or "See if I buy you guys anything ever again!" You know all those good parent sayings  :-)

Spending this time with them has made me see just how much alike they are. I suspect that's why they have clashed so many times over the years.

Pure craziness, I'm not sure it's all diabetes related. lol!