Prayer List

[countrygirl1986]

Title says it all! To be fair, if you choose to pray for someone on this thread, you may for it in your religion of preference, be it Christian, Jew, Muslim, Hindu, etc.

We all need a few prayers at least once in our lives.

Prayers can be about anything and anyone, so long as it is appropriate. This is a good place to ask for prayers for natural disaster victims, payers for loved ones, or prayers for your health.

I shall go first.

I was diagnosed with an endocrine disorder back in May of 2011. This endocrine disorder if not treated can lead to infertility, cancer, and or diabetes. Not treating it is not an option. Unfortunately, ever since I was a child, I have had an issue with swelling and idiopathic stomach pain. In November of 2011 the swelling became critical. I have nearly died nine times due to it, just since the end of November. It turns out treating the endocrine disorder has made the swelling worse, which meant I finally seemed treatment for it (couldn't ignore it anymore with my throat swelling shut) . This month, January of 2012, I was diagnosed with hereditary angioedema type III. The idiopathic stomach pains were my internal organs swelling. It is a swelling disorder caused by not having enough of a chemical in the blood which causes the buildup of another. My doctor is getting me into a treatment program but the attacks have begun to number 1-2 a week, almost always resulting in an emergency room visit, sometimes with admittance go the hospital.

These attacks are scary. I have almost been intubated and had that failed they would have performed a trachyitomy. I am lucky to have the rarity of benadryl easing the attacks. It doesn't for most people. It is a rare disease, affecting between 1:50,000 and 1:150,000. Of those sufferers, 85% have type 1, 15% have type II, and less than 1% have type III.

Please keep me in your prayers... and please pray I get a computer up and running so I may write again, as writing will help me sort my thoughts and come to terms with the disease.

Thank you.

[RogerDuke]

It's not every day I log onto HazzardNet and read a post this intense.

You're certainly in my prayers countrygirl.

I really don't know what else to say except keep us updated on how you're doing.

We're all family here so when one of us is hurting we all are.

[Meadowmufn]

Prayers going up! I hope things get under control for you soon.

[countrygirl1986]

Thanks guys.

I am currently suffering another attack (abdominal) and have been since Saturday. The benadryl is helping to take the edge off and they have me on something for the pain at the hospital.

Unfortunately due to the pain meds, the antinausea meds, and the benadryl I have spent the last few days pretty much out cold. This is one of the reasons I hate taking pain pills (also can't stand the high feeling which comes with them), certain anti nausea meds, or benadryl.

I did hear from the pharmaceutical company. They are going to come. Through with the meds. I have to call the nurse back in the morning because I missed her call which came after the company called. She has to shoe me how to give myself the injection. It'll be a 25 gauge needle (big needle, IV needles are usually only 20) with the injection going into my lower abdomen. There is also a high likelihood of an injection site reaction.

On brigjter news, my therapist I see partly due to my aspergers syndrome (autism spectrum disorder) has been helping me deal with this but she is concerned because I have seemed to shut down emotionally about the attacks, that I am approaching it too logically. She is probably right but I think I am somewhat in shock from it all, kinda in denial. This is why I want to get back into writing.

This would make an excellent house/dukes crossover... if I could work it right. Even a partnered fic revolving around it would be good as I don't like writing alone. It would help me deal with it.

[countrygirl1986]

Well I spoke to the nurse from the company and she will be out on Saturday to show me how to use the medication for when I get it. She is driving up from Alexandria, Virginia. It is a 2-3+ hour drive. I am in northern Delaware. DC is a 2 1/2 hour drive from where I am. This just shows how rare this is.

[Garrett Duke]

Sending my thoughts and hugs your way. Hope this new injection will help you feel better and that things will soon get better for you all together.

[countrygirl1986]

Thanks Garrett. This has been taking a lot out of me. It is hard being scared all the time of another attack which could land me in the hospital. The first time it happened I didn't realize what was happening until it was almost to late. I had just thought I had got tired of chewing cause I was snacking at the time... then a few minutes later I started having breathing difficulties and sat for about twenty minutes trying to figure out what was happening, what to do, and hoping it would go away on its own.

The next time it happened was two weeks later during a public appearance and performance with my fife and drum corps. The paramedics almost didn't get to me in time. I had barely been able to get to the firehouse about two small blocks away before I really went into distress.

It is really scary when you can't breathe, can't swallow, can't talk... has me paranoid. I am having one to two attacks a week now.

On a side note, HAE type III has been linked in some cases to a missing clotting factor in the blood which probably explains why the few times I have had acupuncture done I was told I am by far the worst bleeder the therapist had done it on... and I don't have a clotting disorder (the missing factor doesn't cause hemophilia or anything. It just means the blood clots a bit slower). Oddly enough although the blood clots slower the missing factor has been linked to blood clots in some cases. It only raises the risk a little. It may explain the blood clot mg mom had when I was a kid. She has problems wearing rings due to her hands swelling... which is the first symptom I ever experienced starting at the age of 10 or 11. Later I experienced a lot of stomach pain they couldn't diagnose as well as my knees and ankles swelling for no reason.

I am just hoping to stay attack free for at least a few more days.

[countrygirl1986]

Uh yeah... I had another attack today. I am currently at the emergency room again. Doing better than I was earlier.

[Garrett Duke]

(((HUGS)))) Sending thoughts and prayers your way. Hope you get feeling better soon. I am so sorry you have to go through all that. It sounds really scary!

[MaryAnne]

Prayers and good thoughts headin' your way!

[countrygirl1986]

Thanks. I need them. This is no fun. Swelling of my tongue went down but now my belly hurts reallybad.

[DaneyDuke]

Hope the new medicine is able to control the condition!

[countrygirl1986]

Me too... but it might take up to a month or more to get it.

I am feeling better but now I am really drained. Slept all day today. Literally all day. Surprised my cat didn't dig me out of bed like she usually does. Must have known I needed the rest... though she did wake me periodically to check on me.

Anyway, thanks for the well wishes everyone.

[RogerDuke]

Thanks for updating us countrygirl.

You're in our thoughts and prayers.

Please keep letting us know how you're doing.

Like I said earlier, everybody here is family so when one of us is hurting we all are.

[countrygirl1986]

"Good news, good news, my little fat buddy. Khee knee. Oh.. I love it, I love it!"

I got approved by my insurance for the new medication!

For those lord of the rings fans out there, cause I am sure that there are a few (I am not, granted I like the movies), the manufacturer is Shire pharmaceuticals. This would only make sense to the die hard fans of the movies and books. I told a good friend who is one and she died laughing cause it made her think of hobbit manufacturing drugs.

On a side note, they sent me a welcome kit (sharps container for used needles, clutch, alcohol wipes, computer disk, drug info, a bag....) well shire uses a logo that is orange. The bag they sent me is orange... maybe just a little more yellow than the General but still reminds me of it.

[countrygirl1986]

I am currently in the local emergency room again. This was one of the worse attacks. Wish my medication would come in. The benadryl (Diphenhydramine) is making me sleepy.

[countrygirl1986]

Well.... They admitted me to the hospital for observation. the swelling of my tongue is not going down as fast as they would like. They are also starving me in case they need to intubate me. My hands are swollen, my face is swollen, my tongue is swollen, my belly is swollen, and my throat may still be a little swollen. I mean, come on! Is it any wonder my depression has been acting up lately?

This will make the third admittance since mid December for this. Fourth admittance in the last year if you include my bout with appendicitis which resulted in an appendectomy in August.

FML

[TRPColtrane95]

ouch too much for you, I hope you feel better sooner to be like good heath.. and yeah hate problem heath is.. hope you feel better for sure. no idea to be. keep up good heath to be with medicine as well.

[Garrett Duke]

Oh no! I am really sorry to hear that you are going through such a HORRIBLE time right now. Will definately keep you in my thoughts and prayers.

[countrygirl1986]

I am starting to do better, but my tongue is still swollen. My face, hands, ankles, and belly are all swollen too. I didn't even notice my ankles, the nurse did.

I am now having problems with my blood sugar due to the steriods they have me on. Almost everytime I eat, it spikes. They have been monitering it closely though..

I just received word they are keeping me for another day. They don't want me to go home with my tongue still swollen.

[Garrett Duke]

Well another day is probably a good thing. Hope you get feeling better real soon.

[countrygirl1986]

Thanks Kristy, thanks TRP.

I hope to feel better soon, but its not all bad. I mean, I don't have to cook or clean, and I have access to a computer and cable and radio (the hospital has a nifty monitor which provides all three). I mean, I could do without the pain in my belly, but they are giving me medication for that. Believe me, I am being very careful not to offend anyone with this post. I done goofed once due to the pain medication which I truely regret. I mean I feel really bad about it. I get given that medication and all common sense goes out the window and I am liable to say or do anything, whether I mean it or not; I just say what is on my mind and how I feel at the time... and I'm starting to ramble. figures.

But seriously, thanks everyone who have been praying for me and sending me their best wishes.

[countrygirl1986]

I am finally home but I am going to lose my internet for two weeks or so. My room got messy due to being sick so much so I gotta get it cleaned up and work harder on my chores. I asked for consequences for my actions when I moved in here due to my aspergers syndrome and the fact my landlady isn't charging for rent in exchange for house and yard work. Fair enough... just wish it was one week instead of two. Oh well. If you see me between tomorrow and two weeks from now I may be in the hospital again. Please pray things get better for me.

[RogerDuke]

Hang in there countrygirl.

NPR just did a report on aspergers last week. Before I heard it I didn't know too much about it.

We're praying for you and please keep us updated as much as you can considering your internet problems.

*HUGS*

[countrygirl1986]

I have to earn my net privileges back. Ugh.

I have had three more attacks since I was last on, two of them in one day (I came out of it and twenty five minutes later I went back into it at the hospital but came back out of it before they had to intubate me. It was a pretty bad attack. Was getting so little air that my oxygen levels severely dropped and the doctor said "put her on oxygen to get her levels back up")

The new medication is working well. It brings me out of the attacks. Problem is my body can out run the medication, as I discovered, if the attack is going to be bad enough. But on the bright side, after one dose for a mild attack or two for a severe one, the swelling is completely gone! This is big for me because ever since these attacks started (or should I say became life threatening) I have been nearly constantly swollen (face, hands, ankles).

Funny thing is, I have had problems with swelling since I was a preteen. Two years ago or so, when I was living out of state, I went to a doctor because I was annoyed at the swelling. I never payed much min to it unless it was painful. When this started I was maybe 5'3" and 100 lbs. Very skinny. Well since then I was put on medication which caused me to gain, as well as developed an endocrine disorder which causes my weight to fluctuate. To my chargrine I am currently 5'5" and 210 lbs (down from 270 when I visited that doctor). The doctor looked at me, listened to my heart and said it was because I am fat. Ran no tests to eliminate autoimmune. Did not send me to an immunologist like he should have. He just insulted me. Unexplained swelling can usually be one of two things when found throughout the body: heart or immune system. Mine is due to the compliment system... a part of the immune system. The immune system has two parts: white blood cells and the compliment system (and I still don't understand the latter so do not ask me to explain). Sorry I am still peeved about that. He also refused to test me for the endocrine disorder which I was later diagnosed with.