More to worry about
March 4, 2010
My throat hasn’t been back to normal since that awful test last week. I’m beginning to really get worried if there is something wrong. They informed me that there is a problem if I see any blood in my mouth when I cough. Haven’t seen any but sometimes I taste it. Gross, I know. I never know when to go in and check it out or just see how it goes? I get especially paranoid when I feel so weak like I do today. Ugh, I’m really stressed out. Mostly because I do NOT trust 90% of doctors and who knows what could’ve happened while they jammed that tube down my throat?
PS adding to my anger: the doctor that runs the Evalve trial still HAS NOT called me with my results. I hear through second and third hand accounts that I am not a candidate because my valves are “too messed up” and the clip would not help them. How is that for professional?
Biofeedback Therapy
February 9, 2010
I have plans to look further into therapies like Biofeedback Therapy to manage my chronic pain as opposed to painkillers and meds. I can’t go one like this forever –in pain and exhausted for about 70% of my life.
It’s been on my mind for a while now to give it a try. I found this article interesting. I am always amazed at how slow the “medical community” is on the mind body connection. It was only in very recent history that this has become an acceptable thought in the medical world.
They are finally acknowledging legitemate treatments like acupuncture, cognitive behavior therapy and bio feedback therapy as medicine! Great news. I look back and wonder what took so long? Another twenty years from now this “lag” will seem ridiculous to everyone, not just some of us.
The Phone Call
February 3, 2010
Rheumatologist finally calls. I am underwhelmed.
After waiting a day and a half to speak with him it is clear that he is rushing on the phone with me. I don’t blame the doctors themselves anymore, they simply don’t have time, and I don’t really take it personally anymore but it doesn’t mean that it’s not incredibly irritating. I always feel alone and a bit helpless after one of these phone calls. The truth is the doctors really don’t “get it”. They don’t know what it’s like to be in this sort of pain.
I was put on hold two times for four minutes at a time during our short conversation (he had to go because he had patients in the hospital to attend to). It was a very rushed conversation… I even forgot to ask him a few things. After discussing quickly what I’ve been doing to maintain my pain he suggested a new type of drug for me to take: a line of drugs that are currently being used to treat chronic pain in Fibromyalgia patients such as Lyrica, Cymbalta, and Savella. He suggested and has had most improvements with Savella.
Luckily I have been able to avoid these drugs up until now and I don’t like the idea of taking them at all. They may be good for some people and I know some who have taken them to alleviate pain, but I personally prefer to keep my prescription meds to a minimum considering all that my badass liver has weathered. That, and I like to be extra careful because of my heart. You never know how these things may affect your rhythms.
Also, I am not so psyched to take a medicine where the side effects start out with this statement:
You may have thoughts about suicide when you first start taking Savella, especially if you are younger than 24 years old. Your doctor will need to check you at regular visits for at least the first 12 weeks of treatment. Call your doctor at once if you have any new or worsening symptoms such as: mood or behavior changes, anxiety, panic attacks, trouble sleeping, or if you feel impulsive, irritable, agitated, hostile, aggressive, restless, hyperactive (mentally or physically), more depressed, or have thoughts about suicide or hurting yourself. Avoid drinking alcohol while taking Savella. Alcohol may increase the risk of damage to your liver.
Um, no thank you. I think I’ll pass on the hostile, aggressive mood swings and panic attacks. Been there done that with the ROIDS (Prednisone) and it wasn’t pretty.
And here is my favorite part: “Be careful if you drive or do anything that requires you to be awake and alert.”
Wtf? That’s hilarious.
Guess I have to keep up my pain management, and when it’s bad take the painkillers and stay home on the couch. These other medications are not an option for me. Not cool.
You’re joking, right?
February 3, 2010
After a solid two years of dealing with the circus that is Healthcare in NYC it takes an extraordinary mess to surprise me at this point. An extra special feature that can set me off and become annoyed, enraged, or just insulted.
For example, I am keeping calm about my present gripe: I emailed my Rhuematologist yesterday at 6am after a sleepless night of intense pain. He wrote back explaining he would call me back to speak with me about some options. He never called. Not once. All day long. This is infuriating, true, but I can’t get worked up over it. I am so used to it by now. Today I am trying to get in touch with him again. Grrrrr
Now onto the showstopper. I have an issue that is too personal to put on the internet. There is ONE doctor in Manhattan that specializes in this problem. I called the office today to make an appointment where I learned the following: This doctor does not take insurance (not a surprise), and the fee for your first appointment is $810 which must be paid the same day as your appointment. WHAT?
$810 is an all time high. I am in shock.
Castor Oil Packs
February 2, 2010
I’ve been doing castor oil packs on and off for almost two years now. Castor oil has many natural healing qualities so I always make sure I keep some in the house.
I learned to do the castor oil packs from one of the many healers I’ve encountered. She is a lovely woman who specializes in Mayan Abdominal Massages. When my stomach was at its worst from the ischemic colitis and torn apart from all of the harsh medicines I’d been taking, the abdominal massages were usually the only thing that could get me to eat and digest successfully. She used castor oil for the massages but first she would put a castor oil pack on my stomach.
The castor oil pack consists of one layer of castor oil that you rub into your entire abdomen, a rag soaked in the oil which you place over your abdomen, and then you wrap it up tightly with saran wrap. Finally you put a hot water bottle over your wrap. The heat is essential for helping the castor oil to soak in through your skin and get to your organs. Most importantly, the castor oil pack cleanses your liver and gall bladder as well as you upper GI tract and stomach. It can be sort of messy (and it stains) but castor oil is so amazing I use any extra to rub on my face and arms. Sidenote: I find that it gives my skin a really beautiful glow when I use it on my face every so often.
Here are some pictures of my process. In the first shot you can see my supplies. That hot pink water bottle is one of the most important utensils in my home. I put scorching hot water in there and hug it when my stomach hurts, or place it over muscles and joints that throb with pain. It’s incredibly soothing.
The second shot is a side view of how my stomach looks after I’ve wrapped it up. The next step would be to lie down with the hot water bottle for about 20 minutes.
Benefits and Uses of Castor Oil:
- reduces inflammation
- increases circulation
- repairs damaged tissue
- facilitates new tissue growth
- stimulates the production of collagen and elastin
- strengthens the immune system
- induces labor in pregnant women
- laxative for constipation
- anti-fungal components
- antibacterial components
Why?
February 2, 2010
Awake all night. Haven’t slept even one minute (it’s 6:30 am).
The pain is intense. Unbearable even. My muscles feel like they are going to explode from the pressure. Like my bones are being crushed.
Why? Why? Why?
Staying Focused
January 21, 2010
After my post about yoga I was so set for Tuesday afternoon!
Well, my body had other plans. I felt absolutely awful, it was one of those days where everything hurt. Bad.
I couldn’t imagine moving far from bed so attending a yoga class wasn’t a realistic goal for the day. I am getting better at accepting the bad days so for once I didn’t dwell on the fact that I couldn’t do what I wanted. I’m getting better at it. Head up, move on.
I’m going to try again the end of the week. Hoping my body is up for it then.
Chinese Medicine: Acupuncture and Cupping
January 12, 2010
I keep up my acupuncture appointments once a week because they bring me such relief. Yesterday I went to my acupuncturist with the usual complaints: anxiety, aches, pains, fatigue, terrible back pain, and I told her I felt like I was getting a cold. She told me we would do something new today. Something called cupping.
“It is said to improve the circulation in the body by opening the lungs up and drawing the toxins away from them and toward the skin’s surface.
Cupping draws out Wind, Cold and Damp according to traditional Chinese philosophy. Studies are beginning to show that Chinese medicine cupping can be used to treat a variety of very different ailments, including swelling, asthma, edema, dull aches, pains, bronchitis, arthritis, stomach ache, abdominal pain, headache, indigestion, painful menstruation, lower back pain, coughs and a lot more.”
Do not let the bruises fool you, it felt amazing! Relief! I asked why haven’t we ever done this in the year and a half I’ve been coming here? It felt like getting a massage and being vacuumed at the same time. It brought great relief to the tense muscles in my back and sure enough, it drew out my cold just as she said it would.
I wouldn’t mind doing this once a week. I am still sore but that “good sore” you feel after a deep tissue massage.
Lauren’s List of Incredible Sadness
January 5, 2010
Hard day today. I’m posting this tomorrow (Tuesday) morning in hopes that as you read this I am better and it has passed –like a bad dream.
I’m taking a risk here, this is super personal stuff (even more personal than talking about colonics).
Some days it all catches up to me. Some days I feel so sad for everything that has happened and I can cry the whole day long. Today was one of those days.
I spend so much time moving forward in battle mode and pushing through the obstacles I forget to take the time to be sad. I stay positive because I convince myself it will all be ok, and I believe it will, but what about the last two years of my life? I find myself mourning the time lost to illness… I didn’t choose any of this and it all happened so fast that in many ways my brain and body are still trying to be the new me; the me that was shaped out of trauma and illness…
Lauren’s list of incredible sadness (it helps to get it out):
1. What about all the things I’ve had to give up?
2. The sacrifices I’ve been forced to make?
3. What am I possibly gaining from this?
4. What did I ever do to deserve this?
5. How do you get your youth back?
6. Am I making the right decisions?
7. So many relationships that crumbled because of this…
8. I can’t remember the last time I laughed so hard I cried.
9. I can’t remember the last time I truly had fun without health concerns drowning out the moment in the back of my brain.
10. When will these difficult times end?
The sadness turns to frustration and anger… I am doing everything RIGHT! I am doing it all, I am eating things I despise, I am going to doctors and specialists, I stay home and rest when I’d rather be working all day and going to parties all night in ridiculously high heeled boots.
Lauren’s list of incredible anger (also helps to get it out):
1. It’s hard every single time I say no to an invite out with friends or family (what if they forget about me)?
2. Where did the last two years go?
3. Holy shit, I’ve turned into a senior citizen.
4. The medicines have caused me more harm than helped me.
5. Most* doctors are not to be trusted.
6. You are treated horribly in just about every NYC hospital.
7. You are treated like you are going to break (physically and mentally) by everyone around you. You start to feel crazy.
8. Autoimmune disease is no explanation for what I experience. You can’t put a name on this nonsense.
9. No one will ever TRULY understand what I go through. It’s lonely.
10. The fear that it will progress… I feel so helpless.
Ah, it feels good to write it all here. I may regret writing this but I might also help some people out. People who may be going through something similar. You aren’t alone if that’s you.
Now I’ll go to bed and I’ll think of the people I love and I’ll get up tomorrow and get back into the fight.
Little LDV. So innocent and carefree. How do I get it back?
No Limits
December 5, 2009
Started to feel like a person again yesterday. I had energy, and my body hurt only a little compared to what has been going on this previous week. So what did I do? I did everything I had been wanting to accomplish in the past week in one day. I push my body to the limit! Walked to the grocery store, went shopping, cooked, anything to prove to myself that I can still do things!
Paying for it now but it felt so so good.
In bed today. Happily achy.
