I am floored with bitterness, sadness, and confusion by this topic.
The learned behavior of what a father "is," is still very cold and withdrawn. I am still quite the lost little puppy on this topic. Would I like to explore it further? Hell to-the-no. I am completely satisfied with reality and not dancing with insomnia over it. I prefer the sandman and my happy little world as is. Save as...!
Oh... and happy father's day!:)
Bright side - I have a JMDS friend. :] Her son has it as well. Instant bond. <3
I have to have to have to have to call the clinic tomorrow about this tapering. Other JMDS moms say be weary!!! I'm as weary as it gets. :[ No set backs :[ :[
Oh, and I have to give up school.... for this fall semester. I'm seriously crying about this. Like, anxiety and all. The truth is out there and it's getting closer and closer each day. I've been thinking my whole life experiences led up to me being strong enough for this one moment, but maybe i don't have the chops for this shit, I at least need to pretend until I lose my marbles completely.
So, I have to HAVE to have to go to the library and get some biology books.. and some pre-calc and just start homeschooling. I'm terribly terrified I will give up. I need to be self-motivated. I need to rise to this challenge.. easier thought than done.
JR's got a head cold. I will be losing my shit sooner than later if he gets eli sick. I googled sick on his drugs and came up with colds turning into chest infections. :/
I must get to the DMV and library, like yesterday.
I need to ask my JDMS friends about the process of upping methotrexate and tapering off prednisone.
I did absolutely nothing accomplishing for the boy today. I had a huge mental break. Tomorrow I have the speech pathologist coming. It has to be three days since we have a LOT to work with apparently. :[ Good news is he said his soft palate was weak, but is working . This is the last thing to come back, so I am more than thrilled by this as good news.
I need to make a few follow-up calls and clean.
Otherwise, I'm hoping for another mental break and a movie like Mr. Wrong. Hopefully, Jonah will start his naps again. he hasn't since the hospital, but today he took one.
The idea that this is long-term stuff is absolutely exhausting. I will not be broken. Next week, I will do more research.. maybe even sooner. Day-by-day, Jacqui.
Been taking it rather easy today. Helped some friends out and left the two older ones behind. It was great getting out!!
Now I'm excited to study the immunoglobins. Immunoglobins are a protein production of antibodies that attack foreign objects which enter the body.
So far I'm learning that IgA has two subclasses IgA1 and IgA2. What's interesting is that these immunogloblins are both found it the " mucosal immunity." Such as secretion, tears, saliva, and intestinal lining. A small amount is also in the blood. It's largest heavy chain is found in type α. (which trying to follow up on this, I read about many different avenues then realizing these avenues are more like california road maps. As my second oldest sister once described it, a bunch of spaghetti thrown onto a plate and labeled as such roads, freeways, and highways).
I can't build a house starting from the top, so ... I'm going to start out with my books currently and then go to the library hopefully on Monday after Eli's treatment.
Going to watch Book of Eli with the fam now. :]
"IgE is the immunoglobulin associated with allergies and parasites. In fact, it is theorized that it's original purpose in the body was to fight parasites in the digestive system. However it is now mostly located in the mucous membranes and lungs. When a foreign substance or allergen enters your body, IgE is produced. When the same allergen shows up again, that particular IgE is ready. It attaches to certain cells in your body (usually mast cells) and causes the release of histamines. This is why your allergy medication is most likely an antihistamine. These products counteract the histamines caused by IgE. An allergic reaction started by IgE immunoglobulin can be as mild as a runny nose and itchy eyes, or as deadly as anaphylactic shock.
"It is still not known why some people have such severe allergy symptoms, while others experience mild symptoms or none at all. There is a genetic tendency for some individuals to more easily produce IgE immunoglobulin, but this is not always the case. IgEs can also be associated with some auto-immune diseases. These diseases cause your immune system to turn against your own body, attacking healthy necessary cells. The medical community is not yet certain of the root causes of these auto-immune diseases.
"If you suspect you have an allergy, your doctor may order a blood test to determine the levels of the different types of immunoglobulins in your body. While antihistamines can be an effective treatment for the symptoms of your allergy, they are not a cure. You will have to take them consistently when your symptoms appear. Antihistamines cannot be targeted specifically to your area of need, so they tend to dry out all of your mucous membranes (not just the affected ones). This can be an unpleasant side effect for some people. There is new research being done to determine if a better understanding of IgE immunoglobulin and its actions could lead to new treatments focusing on blocking the antibodies from producing histamines in the first place."
Also upped his in-take of "supergreen juice" along side his vitamins and acai juice.
I have to list all my thoughts because keeping up with everything is starting to become super overwhelming:
Along side the Dr.'s already, I have Dr. Wu and Dr. Rider (helping with consultation). She said to seek Dr. Shahaam Brocha. Just might do that. Also, I'm eligible for the NIH research study. It's an open study that is for JMDS children who are twins or have siblings. We cannot do this until Eli gets used to needles. He hardly realizes this is until further notice. :[
Dr. Rider advised me to seek a second opinion at the LACH which is EXACTLY where I can and will take him.
I faxed over reapplication to get on the Katie Beckett program through the state as well as JR's p so I believe that we are in a serious world of financial hurt if I don't come up with a running game plan that Eli's eligible for. He won't listen to me. We're claiming his workers finances as well which seems that our gross income is a lot, but it's larger (about roughly $1000 monthly more) than what we make.
I have no choice on the matter. It's easier to just deal with it. Pettiness is just what it is, pettiness.
I spoke with Bobby AND Sharon via our insurance. They're really just assessors, but they said they'd ask where his wheelchair is.
First thing in the AM i have to call welfare and speak with a supervisor to someone because they're incapable of punctuation.
I also have to drop off this medical document that states Eli's perminently disabled so we can get our new plates for disability. :/ Not something I'm enjoying like I would if it wasn't me. I'd rather walk across the world with my kids than enjoy the closer parking.
Then Seashell came over (Chelsi) and seerrriousslly helped me gut and rearrange. We sanitized every toy, re-arranged Eli's room for medical equipment, and cleaned out the playroom and it looks and feels organized. I'm very thankful.
I still have so much to get organized and do, I'm swamped. I'm also running low on fuel. I'm ready to put all on pause and get away. By myself.
I have lots of support going on. I hope this is long-term. I can do this. I have yet to call Verdawn who has some wise sentiments, I'm sure. But that's more than a handful of supporters. I've never EVER asked for help, but I realize I am incapable of doing this alone. :/ I might be weak, but I'm somebody's mother. I need to focus on continuing and not letting my feet dry in this thick cement.
.....So, ....having another baby, I don't think is good for my mental health. Not in the least. However, I will be researching stem cells so I won't shut my mind off, but it's just too soon to consider unfortunately.
I also am going to look into immunoglobulins as well as the prostaglandins. I'm probably going to purchase a biology ahead of time. considering anyway.
Tomorrow, I get my carpets steam cleaned. Please steam clean my dog o.o
Eli's had a rough few days. Today he's waaaaaaaaaaaaaaaaaaaay lethargic and lacks energy. He's still there... somewhere.. inside..
I also called for counseling for him... we have coverage...
This end brings me to my rant, so fair warning from this point on it's all opinion.
My MOTHER. Oh jeez. My mother. The one who cries pity since the day she was attracted to men and the one who gets jealous if someone else receive love. So jealous. Need I remind her of her actions and choices in her life? No, I don't. Why? Because my respect for her is zero in the department as my mother. For Eli though, she continues to wake up in the middle of the night (so she says but I believe it because she's a crackhead) and checks on him. We take turns doing this. She also bought him a few games and does the laundry. So, that's fine. Just keep your door to your stinky cave shut, old woman.
I can honestly say that I'm quite frankly, sick of those who CHOOSE to give up. If you want to die, then die. I realize this sounds a bit crass, but if I wanted to die, I would. I wouldn't continue to speak about it. I respect life way too much. The fact that we are alive is a miracle in itself. Why let so much time go to waste just so you can truly feel what regret is?
I love my children. They're my reasons.
However, if I ever lost any one of them. Lock me up. If my whole purpose dies, I die with it.
until next time.