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http://www.mydogisagangster.blogspot.com
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XO
Alie
The holiday season almost makes it impossible to stick to a diet. I lost my will power to sweets more times that I can count in the last month.
Time to get back on track and lose some of this thunderous ass. I am beyond unhappy with myself and although I am sticking to my diet when it comes to healthy meals, I’ve done way too much snacking.
I decided to ride by bike back to work from lunch yesterday instead of drive. It’s only about a mile and a half, but it’s the little things that make difference and you have to start somewhere. I feel so lucky to be able to ride my bike right now and I have to take advantage of it, knowing that I might not feel so great next week. But I’m going to stay positive and hope that this STAYS away fro a while at least. I haven’t been able to feel the growths for about a week now and I don’t mind them being there as long as they don’t cause me intense pain every 15 minutes.
I’m going to plan on riding my bike back from work again today and tomorrow as long as the weather permits.
Tonight is my second acupuncture appointment and with Whitney at Oakland Acupuncture Project and I am excited. I don’t think many people have this level of excitement about being punctured with needles… but considering how much relief I got in just a week, I am beyond happy to go back.
It’s been a little less than a week since my first acupuncture appointment and I must say… I am a believer. I had a very positive and welcoming first experience with acupuncture and will be going back at least once a week. I was given Chinese herbs called Gui Zhi Fu Ling Wan, which help endometriosis, abdominal masses and menstrual irregularities. So far, so good. I still have minor pain but it has gone down considerably compared to what it was at. This is a HUGE step for me and I finally see a glimmer of hope. I can’t describe how wonderful it feels to know that this might be the answer I’ve been looking for.
I also spoke with my acupuncturist about some of my other concerns such as anxiety, sleep problems and the plantar fasciitis in my foot. All of the issues I discussed have been reduced dramatically. My foot has already started to heal. I went on a little walk the other night, to try to get my blood moving and get my heart rate up a little bit. Unfortunately I couldn’t keep a very fast pace since I’m *still* limping… but it was a start. I had been in the boot every day ’til I started acupuncture and for the first time I am actually able to see a difference and WALK!
I am diving into a new yoga routine, being more diligent with my diet and continuing acupuncture as treatment, per my doctor’s orders. I am pleasantly surprised that my Kaiser doctor is so supportive of alternative medicines and is actually the one that suggested them in the first place. I hope I have a wonderful report for her come February when we meet again. I feel like it’s my last option before Lupron, so I am putting all my energy into making it count.
My next task is to remain calm and focused through the next semester and I almost wonder if that won’t be the most difficult of the last few years. I am tackling a full-time school schedule while working 40+ hours a week. I am already overwhelmed about this. I am finally working on my major, Psychology.
Christmas was amazing. I feel very lucky to have three families to spend Christmas with. I got to spend quality time with the Alliger’s, my Mom and the Righetti’s. Sadly, it was my first Christmas without my father, ever. He was in Arizona with my Step-Mother and Grandparents.
So there’s the last week in a nut shell. I am looking forward to focusing on getting better and finishing this chapter of school.
I have to remember, above all else, to breathe!
Tonight is my first acupuncture appointment. I am keeping my fingers crossed that I find some relief, as I am running out of options and beyond frustrated right now. I am gaining weight and feeling as out of shape as I look.
I am going with a list of problems, endometriosis obviously being the most important.
Wish me luck!
Update to follow!
I finally had the follow-up appointment after my ultrasound on Friday. It was pretty much a waste of time. She told me they’ve confirmed that the endometriosis is back and she doesn’t understand how. Jory came with me to this appointment and it was nice to have his support, I always go to these appointments alone. I was happy that he got a chance to ask the doctor his questions and was participating in finding an effective treatment for me.
I’m not scheduling another surgery at this time, the doctor says it’s too soon to operate again. This is good and bad. Giving my age, it’s not good that I’ve already had as many surgeries as I’ve had. I am happy I don’t have to have another operation, but am frustrated that I won’t be getting the relief I was hoping for. I basically have to sit around while these things continue to grow, waiting ’till I’m ready to get pregnant.
Dr. Perry brought up Lupron again and I once again expressed my reluctance to the medication. Lupron is given in injections and tricks your body into thinking that it’s in menopause. The treatments are 6 months long. The side effects are a nightmare, hot flashes, weight gain, nausea and so so much more. I am not comfortable taking Lupron, even though for the first time last night, I considered it. Like most things, people rant about the negatives more than the positives so I haven’t been able to find many Lupron success stories.
I am not ready to go through menopause at 26.
Unlike I thought, hysterectomys are NOT a good treatment for endometriosis. In my ideal world I’d have two or three kids and then have a hysterectomy, providing me with relief for the rest of my life. Unfortunately, it doesn’t work like that. Endometriosis feeds off of estrogen. After a hysterectomy you still have to take synthetic forms of estrogen, which the endometriosis feeds off of just as easy as natural estrogen. The disease still grows.
We’re going to try one last thing, acupuncture. It might be able to help me get some pain relief and it’s offered through Kaiser. If it’s not working, I am going to consider Lupron. I hate hate hate hate the idea of it but I’m starting to feel like it’s my only option to get my life back.
I was given the green light to exercise again, as long as the pain is tolerable. This made me VERY happy, as I am starting to gain weight again. Considering I can still barely walk, I’ll have to let my feet heal first… but I am very excited to get active again. I am thinking about getting that Bladium gym membership I’ve been wanting. I am SO self-conscious when it comes to working out and wish I had a work out buddy. Yoga is supposed to be extremely beneficial and I hope to get some help from it.
There is an aspect of loneliness with this disease, as I’ve described before. It’s apparent now more than ever. I feel repetitive. I feel like screaming when people tell me I can adopt. I feel like I’m repeating myself and hate when people ask me how I’m doing, because I sound like a whiney, pathetic broken record when I tell them yet again how miserable I am. I almost think it’s time to start lying to avoid looking like a victim or someone who’s just plain lame. I feel like people don’t understand my impulsiveness to have children and how much it hurts me to think about not having any. I feel like people have absolutely no idea what I go through on a daily basis and that I should “get over it” or “suck it up”. It’s a horrible feeling and I’m very embarrassed. I haven’t returned any calls from people seeing how Friday went. I just don’t want to deal with it.
I found a helpful website today. http://www.endo-resolved.com/ There’s a lot of good information on there. It also suggests I do yoga for a few different reasons. This is the list of symptoms that come along with Endo and I would hope that people with these symptoms would get checkd out:
The most common symptoms of Endometriosis are:
Other symptoms which are common with Endometriosis include:
One thing I love about Kaiser: I love that my doctor can email me.
That doesn’t mean I’ll love the message. I got this from my doctor about an hour ago and it just made me cry. I hate that I am facing this every day and that my pain seems to grow by the hour. One point at work today I couldn’t bend down to get something. I hate that I don’t have the luxury of waiting 5 years to have children. I HATE IT.
From: RENEE LORRAINE PERRY DO
Sent: 12/8/09 5:35 PM
To: Alison M Voss
Subject: results
Alison,
Hey, I was unable to reach you by phone. I have reviewed your results with a few of my colleagues. The endometriosis has returned. If you are considering pregnancy, then we would defer any surgery until after pregnancy. Everytime we do surgery at this point, will take away good ovarian tissue with the removal of the endometriosis. Now, if you were having problems getting pregnant, that would be another situation.
We have a f/u for this week. You also have the option of a second opinion with our laparoscopic specialist if you like.
Let me know.
Dr. R. Perry D.O.
Dept of OB/GYN
280 West Macarthur Blvd
Oakland, CA 94611
Kp.org/mydoctor/reneeperry
On a positive note, I entered a study on endometriosis today. I am going to get a box in the mail this week that will contain swabs to sample my DNA. They are studying the frequency and positioning of alleles on DNA that are thought to contribute to endometriosis. In a way, I’m donating a part or my experience to scientific exploration and possible advances in managing this horrible disease. I feel a little better by helping… but not really. I am depresses as all hell and wanting to be with friends and family right now. Amoreena’s actually on her way to come get me so we can go have fro-yo.
The last time I was at my doctor’s office (about two weeks ago) she found another growth, after convincing me it was impossible for any endometriomas to grow right now with my treatment. We scheduled an ultrasound to get a better picture of it.
Since that appointment two weeks ago, it has doubled in size. It’s now the size of a golf ball.
To make my day even better, there’s a brand new endometrioma, right next to it. The problem with two growths is that there’s more risk of torsion, since there’s more weight on the ovary. Torsion happens when the ovary twists because of the weight of the growth. It can stop blood flow to the ovary which could potentially be fatal. If I feel certain pain I have to go immediately to the ER, which would probably result in an emergency operation.
I’m starting to worry and I can feel myself becoming depressed. I don’t have any options or answers as to why I have to deal with this and I just want it to stop. I don’t want another surgery. I don’t want a hysterectomy. I don’t want to be forced into early menopause. I feel completely helpless and am seriously over it. I’ve become a pro at hiding the pain and emotion that comes with this disease, that I feel every second of the day. I can distract myself and try to focus on other things and people, but it’s always, always there. I am starting to feel very weak. I am feeling strong pain in my abdomen today and it just makes me want to cry.
I could use a nap. I’m a little emotional today.
I DID get this cool photo with my phone, it’s my abdomen. The highlight of my day I suppose:
Tomorrow I go in for yet another ultrasound. I wish I had an idea of how many of these things I’ve had in my life time, we must be past 30 at this point.
The plantar fasciitis is still kicking my butt and I’m still on crutches, and I will jump for joy the day I can retire them. My arms are sore and I am sick of being gimpy.
On a completely different note, I purchased my very first Christmas present online today. I can’t believe it took me ’till now.
I want to try going to spin classes. I’ll probably have to wait ’till after surgery. I am worried that it’ll mess with my endometriosis but I can at least try. If it does, then we’re back to yoga and light walking. I am going stir crazy and can’t help but be down about not being able to exercise and keep weight off.
I’m going to attempt to take a yoga class tonight. Fortunately, I am feeling better today. I hope it lasts. I really need to not be in bed every night, I’m feeling overweight and out of shape.
Yoga seems to be less-harsh than regular exercise, as there are no super sudden movements that could endanger my abdomen and the junk inside of it.
Wish me luck. If anyone wants to join me I would love company.
Pain is obviously a key factor in my every day life when dealing with endometriosis, but there’s also an emotional aspect that comes to the surface once and a while.
Last night I had one of those emotional moments.
I have been in pain since over-exerting myself Saturday night while dancing. I have been feeling it pretty much since I woke up Sunday morning and it hasn’t really stopped. Last night I had a pretty bad throbbing on my right side, which is new though that’s where the new endometrioma/growth lives. I was a little shocked. I had expected to feel pain there eventually (as it grows) but wasn’t prepared last night. As I’ve mentioned before, the flare ups and growth seems to correlate with stress. Last night was pretty stressful as I was finishing a term paper and preparing for my final.
The pain was tolerable last night but I was afraid to move in fear that it would worsen and I got snappy with Jory. I guess I expect him to understand what I’m going through sometimes even though there’s no way he possibly could. I expect him to not take it personal when I get short because it’s not him that I’m upset with.
After a few minutes of not moving last night I started to cry. I just couldn’t help it. I try to avoid crying or feeling sorry for myself because it gets me nowhere. Sometimes I can’t help it and I have little breakdowns. It only lasted for 5 minutes but I felt 5 minutes of pure despair. The “why me” thoughts came to the surface again. I start to think of what might happen if it gets worse and all the overwhelming thoughts and “what ifs” flood my head. These moments are very trying on the soul and I honestly feel that every time I get through one of those spells I have changed a little bit and consequently become a little bit more numb to what’s going on. Of course, I eventually realize that I have it good and that it could be worse. I am pretty good at concealing my emotions about my condition but we’re all human and I suppose anyone would have a few moments of helplessness when dealing with something as horrible as this.
I wish I had done more when I was feeling better, before this current occurence began. I wish I’d gone out more and laid in bed less. I know I’ll be able to go out and eventually do the things I love more often, but it sucks laying in bed 3 nights in a row and there will definitely be more of that to come.
In two weeks I have another ultrasound. This is the thorough, invasive, internal, horrifically painful type of ultrasound. A week after that I find out if or when I have another surgery. Surgery means two weeks off work which I wouldn’t be able to swing without disability.
Fingers crossed that I don’t have to have another operation. I think that’s what scares me the most.
I wish someone would just fix me.
Current listen:
R.E.M. – Green
Alie's Blog 
