Period.

Well, my last period was November 2008. Yesterday I {think} started my period. I've blogged on here before about my struggles with my period. It has been a driving force behind my eating disorder. I know that sounds weird, but once I learned in school that you had to have a certain amount of body fat in order to have periods, my goal was to not have one. When I finally started my period in high school, I thought it meant I was fat {no, I do not think all the women in my life who have periods, are fat}. I would starve myself until my periods went away. Well, I'm doing much better in the food and weight areas of my life, but I must admit that I see an obese version of myself in the mirror since I started my period yesterday. I feel like such a freak.

I am just spotting right now, but the pain I'm experiencing feels like I should be bleeding much more. This pain is absolutely excruciating! I am even more attached to my heating pad than usual, and drinking lots of chamomile and lavendar tea. Last night i would wake up every two hours, which was right as my pain meds would begin to wear off. But even with the pain, I am choosing to embrace my womanhood. At 28 years of age, although I could probably count on two hands how many periods I have had, I need to embrace it. I need to love my body completely. God made me a woman and I choose to be grateful for that. I also strongly believe in mind/body/spirit connection. I cannot loathe my body and the parts/functions that make my body a woman, and expect not to be in pain. So as I experience this, I am staying in prayer and asking the Lord to help me through it.

Well, there's my vulnerability for today. Call me crazy, but this is me. These are my struggles and I choose to gently love myself through them. *Exhale*

Posted via Blogaway

Posted via Blogaway

GI Stuff & My Lifestyle Change

***This post contains TMI****

So, now that you have been fairly warned, I will tell you about some good news today.
Part of the reason I am living with this new, quite restrictive food plan, is because of my painful BMs (bowel movements). When I did this food plan before I had lost too much weight and had to quit, but it really improved my quality of life in terms of not wanting to crawl in a hole and die due to the hours of excruciating pain that followed each BM. It was truly a nightmare. Anyway, the good news of today is that I had one this morning and it hurt, but not nearly as bad!! I can't believe it!! Sooo exciting!!

On another good note, I had an appointment with the pain clinic yesterday. I have to say, I was quite nervous. I was nervous about many things: being seen as a "pill seeker," having a provider that didn't seem to care, hear or want to understand what I am going through, etc. Well, none of the above happened!! I am STOKED that the NP I saw there, was super kind, attentive, empathetic, competent, thorough and had a hollistic approach, which is an awesome added plus! We decided on the Lidoderm Patch, Oxycodone (test to see how many I need per day, and then decide if I should try something long-acting-which scares me), and Gabapentin/Neurontin. Soooo, I guess we will see how this new plan goes!!

Wish me luck!

2 things that made me smile

1. My brand new heating pad!! I use heating pads all the time. I need them at work, at home... always for the pain. My old one was literally falling apart, thus becoming a fire hazard. Ha.

2. This kit I received in the mail. It is for Endometriosis research. I will add the link about it later. It's exciting for me because I want to help find a cure.

Posted via Blogaway

I HEART RESIDENTS!!

WOW, WOW!!

So, I just had a dr appointment today, and can I say again that I LOOOOOVE medical students/residents??! They tend to be so incredibly eager and I love that! Of course, we didn't get to the bottom of what is going on in this lovely body of mine, but she actually asked some critical questions and believe it or not, seemed interested (imagine that!) in what the issue is and why I am barely functioning with all of this pain! It was just encouraging to actually see a provider that is excited about her job and rather than being completely intimidated about my condition, she was interested in helping.

She didn't assume I was looking for pills- she knows I want answers and I want more than anything, to experience and FULL LIFE!! :)

So, anyway, that's my good news of the day. :)

New Pain Scale!!

Well, I am actually not sure how "new" this is, and honestly one of my least favorite things to be asked at the dr. or hospital is, "describe your pain to me on a scale of one to ten." But on my endo support page someone posted this:

Mankosi Pain Scale

0- pain free

1- very minor annoyance, occasional twinges. No medication needed.

2- minor annoyance, strong twinges. No medication needed.

3- annoying enough to be distracting. Mild pain killers (Motrin, ibuprofen, etc.)

4- can be ignored if you are really involved in your work, but still distracting. Mild pain killers effective for 3-4 hours.

5- cannot be ignored for longer than 30 minutes. Mild pain killers effective for 3-4 hours.

6- cannot be ignored for any length of time. Can still work or participate in social activities with stronger pain killers (Codiene, vicodin, etc.) Effective for 3-4 hours.

7- difficult to concentrate. Interferes with sleep. Still funtioning with effort. Strong pain killers only partially effective.

8- physical activity is limited. Can read or converse with effort. Nausea and dizziness set in as factors of the pain.

9- unable to speak. Crying out, moaning. Near delirium.

10- unconcious. Pain makes you pass out.

I thought this one was really good! Giving it to my doctor!

Posted via Blogaway

Posted via Blogaway

Now What??

Well, it seems my gyn has thrown in the towel. She shoved me over to my primary care doctor to discuss pain management, and basically doesn't know what to do next since I refuse to start lupron. I am just so afraid of that stuff!! And what if it works?? Then what am I going to do, have a hysterectomy at 27?! I don't think so!! Don't get me wrong- I don't envy my dr. I know this has been a long road with me. Obviously you run out of ideas at some point but it's just so sad. So now my dr. has me on vicodin, which sucks and usually does nothing for the pain. I hate this. I just needed to vent. :(

***TMI ALERT*** My recent GI issues. :(

Now, rather than my pelvic pain being all related to my female organs and endo, I have some severe GI issues going on. It has been miserable to go through. Specifically, with constipation. I have had issues with it on and off for about 20 years... I had seen different specialists over the years, and recently had my 2nd lap, which included removal of endo from rectal tissue. Now I am dealing with SEVERE constipation. I spent 3 days in the hospital last week, and I was released last Saturday. There was about 5 lbs of rock hard stool in me and it took them 3 days to get me to pass it. :( Now I am taking Miralax drinks, Senna, stool softeners and fiber supplements. I feel so exhausted because I am having intermittent diarrhea, but the doctors don't want me to let up yet. When I go #2 it is SO PAINFUL even if it's "loose." It sucks- I start shaking and sweating and I have to push forever no matter how much and how soft or hard it is. Sorry for all the yucky details, but I am so embarrassed and IN SO MUCH PAIN. Now the docs don't know if it is more endo or an inflammatory bowel disease such as Chron's. We have to wait a little longer to check because everything is so inflamed. I feel like I'm in hell. :( In the next two weeks or so I will see a GI specialist who will be able to help sort this out. My body is such a mess and now I am constantly obsessing over when I last "went" and when I will "go" again. UGH. I just want to be well again.

Another Post-Op Update

Well, I am 20 days post op now. I am back at work as of yesterday and the pain is moderate. I'll take that over completely debilitating any day! Last week they started me on Depo-provera to decrease chances of endo returning. I am somewhat hesitant about this for 2 reasons:

Not that I have to worry about my weight, but the dr. said it would increase my appetite, so that should help my continued eating disorder recovery. Luckily I am in a place where I don't panic at the thought, but it was still a little scary.

Also, I am lactose intolerant, therefore I get my calcium intake from supplements. I know Depo can decrease bone density and I already have some of the risk factors. Answer: we will test my bone density in one year.

For now, I will trust the docs on that.

The most annoying part of this whole situation is the "bathroom" issue. I still cannot GO! I am sooo constipated all the time and it is just a nightmare, and I am sure a major source of the pain. :( Poor stopped up me. I am working on it... fiber, stool softeners, fruit and veggies and TONS of water!!!

Hope to be out of pain soon, but it's great to be working (through the pain) and not home laying in bed feeling worthless. I continue to praise God for giving me such gracious employers throughout this whole ordeal!!!

Oh, I almost forgot, I had my first ever acupuncture appointment on Friday!! I loved it! I hope it helps. I think I will go back next week. :)

Recovering??

This laparoscopy has NOT at all been the way I had expected it to go. I am going to give the timeline of events:

Wednesday, April 7:

Laparoscopy surgery in the afternoon. When the nurses discharged me they told me there was quite a bit of endo found and removed. They gave me the typical discharge instructions and made it sound like I would be feeling awesome by the weekend. I had chosen to stay with my parents for the remainder of the week. When my boyfriend dropped me off I was actually feeling pretty good! The anesthesiologist did a fabulous job, so I was very alert with little nausea. They had also drugged me wonderfully so I was really comfortable!

Thursday, April 8:

My incision sites were quite sore, the pain was moderate, I was gassy and had moderate shoulder pain. It really was not too bad- I felt what I had expected.

Friday, April 9:

I was having some difficuties staying on top of the pain with the meds they gave me, so we had to go with something stronger than vicodin. Same symptoms as before, but maybe a little worse.

Saturday, April 10:

I had elected to have my parents take me back to my house to get some peace and quiet at my own place. Most symptoms were the same, but shoulder pain had gone away, which was great. At that point I was really expecting to be feeling better.

Sunday, April 10:

I woke up early and to my surprise my incision soreness was just about gone, my apettite was increasing and although I was still feeling quite a bit of pelvic and lower back pain, I was feeling energetic. I went for a walk around the block since it was sunny outside and came home and actually cooked myself some food. It was awesome. Unfortunately, by late morning/early afternoon, I felt I was dying! The pain was SO DEEP in my pelvic area, in my lower back and inner thighs. I was crying and panicking. I knew something was not right. I called the dr and the physician on-call happened to be the one who assisted with my surgery. He said that he was not surprised about the pain I was in and offerred to tell me the details of my surgery. YES PLEASE! So apparently a "fair amount" of endo was found on my rectal tissue. And behind my cervix as well as in the surrounding ligaments. He said that operating on rectal tissue makes the surgery "pretty dicey." He said many gyn surgeons dont even have the skills to remove it (yikes). My dr did a phenomenal job, in his opinion, but that my recovery is going to cause some deeper pain and my recovery will likely take a bit longer than a typical lap. Whew! I am so glad he could talk with me and share this information, but it would have been great to hear it on surgery day! Anyway, he then asked if I had any bowel issues prior to surgery. I told him that constipation had been a huge problem for me for quite awhile now, and that each time I went to the bathroom it was extremely painful during and for at least a half hour after. Ugh. But he said that was likely caused by the endo, and once i heal up it should be all better! Then I told him I hadnt used the bathroon since the surgery. EEK! He was quite alarmed by this and said the constipation needed to be taken care of ASAP. He told me what to take and to call in the morning.

Monday, April 11:

Well, I didnt poop. :( I was up all night in terrible pain-pain worse than I had ever experienced. I called the dr and they sent me to the hospital. I spent that day kept high as a kite through my iv's and praying to God nothing else was wrong. That evening my CT scan showed severe constipation. They said the pain was the result of stools built up and aggravating the areas that were trying to heal where the endo was removed. Ugh. Calcium Citrate drink here I come. I drank the bottle and was up pissing out of my ass for the next 14 hours or so... :(

Tuesday, April 12:

I was dehydrated and EXHAUSTED. My whole body was cleared out and I was feeling like hell and just hoping my body would begin to heal. I called the dr crying over the pain and she said I needed sleep. They got me some super hard core drugs and I finally slept that night and most of Wednesday!

Wednesday:

Stayed on meds and slept off and on all day. I could finally feel some healing taking place! Sure, the pain was present but it was definitely decreasing. I just kept my diet high in prunes and continued with tons of fluids and stool softeners.

Thursday:

Still improving, beginning to eat again.

Friday:

Emotional breakdown. I sobbed and sobbed, realizing the pain was increasing again and I was constipated AGAIN. Seriously?? Another Calcium Citrate drink...

Saturday:

Still constipated.

Today:

Well, I spent the morning on the toilet. Yuck. It sucked. I am in pain and afraid to eat. When will this end??? I have to go back to work Monday. Lord, please heal my body...

The Lap!

SO, I had my laparoscopy yesterday afternoon. It went very well and my surgeon said that he found what looked like endo and removed it ALL!! Yay! Of course, they are sending it for biopsy, but he expects there is a good chance I will be back to normal life and in minimal pain after I have recovered. I sure hope he's right!! Yesterday I was quite comfortable when they sent me home, but despite the pain meds I have been pretty miserable since the middle of the night last night. The incisions are very sore and there are two major spots in my lower pelvic region that just THROB off and on!! I hope it's just healing taking place. Iguess for now time will tell, but I am quite hopeful!! Well, I don't have the energy for a long post right now, so that's all for now!!

Fighting Anxiety...

First of all, I must say that I have an awesome surgeon/gyn. He has a holistic view of medicine and deep down I can trust him. Anyway, with all of this pain I have been really putting my faith in the laparoscopy. Each day I tell myself that the surgery will make it all better. Well, Dr. R. snapped me back into reality!! *sad face* I am grateful that he is realistic but it really shattered my dreams of being cured next week! During my pre-op appointment today he told me that we can hope they find something they can fix, but even if they do, I may not be out of pain. He also warned that it is also likely they won't find anything to remove and that's when I nearly burried my head in my lap and cried. I know it's common sense that laparoscopic surgery is not always curative, but I guess it's just been what I could hold on to to get me through. And now I don't know what to grasp. Yes, I am a Christian, and I do trust the Lord, but I am also pretty down to earth, and I can easily admit that my faith is faulty at times. It is so hard to trust God when He's really just not that tangible... I guess it is something to work through during these Percocet filled days...

ER

Well, Friday was a difficult day. I started by actually going in to work. It was awesome, but after a couple of hours i was in too much pain. So i went home to rest and take some meds and all day the pain increased. It was awful! By early evening I was sobbing uncontrolably. I called my mom and since I rarely cry about physical pain she told me to get to the hospital. Since she was out of town as well as my boyfriend and most friends I feel comfortable asking, I called my wonderful Auntie L, and she took me in. I ended up staying there until 6 am! They did an ultra sound because they thought possibly one of my ovaries was twisted (!!!), and thank God it wasn't! However, they couldn't see the mass on it. I guess that suggests it is a cyst rather than something more solid, which is good, I think. Anyway, here I am, back at home waiting... I decided to spend this week at my parents' house. It is nice to have someone around to help me with things. I am really hoping my dr moves the surgery up when he gets the reports from the urologist and the ER tomorrow. I just want to be feeling healthy and vital very soon!

Here's to hoping for brighter days to come!

Something BIG.

OK, so I count this as good news. Today I saw the urologist. He looked at a CT scan of my kidneys and said that there are a few very small stones in each of my kidneys, but they are not large enough to treat or worry about. He says that the blood in my urine is likely from that. Next he did a cystoscopy (inserted a scope) on my bladder. He said my bladder looked healthy, but as we looked at the screen we noticed something quite large pushing into it. When I say large I mean something big enough that it wouldn't all fit on the screen. Yikes. SO, I am stoked because I just wanted them to FIND SOMETHING so we can FIX/REMOVE it!!! Thank the Lord they found something!!! On the other hand, it needs to be addressed and it would be nice to know what it is exactly. I don't have my pre-op appointment for my laparoscopy until April 1st. I have called my dr already to change that. I am really hoping and praying that he moves that up to tomorrow, perhaps, so we can get things moving along and I am not wasting another painful week in bed without any steps taken to get better.

**DEEP BREATH**

Trusting Jesus

Period.

Today I have another big confession. I have an intense, and I mean INTENSE fear and disgust with my period. I feel quite alone in this, so if you are in the same boat, please tell me! It started back when my period started in high school. I had learned in Health class that I needed a certain amount of body fat in order for my period to happen. So what did I think of when it came? Fat. The crazy thing is, I have always been thin. My family is thin and toned and so was (am) I. So this was crazy, but the blood also made me want to jump out of my skin! So I stopped eating and ran until my period went away. This did not take long. Since then, I have not had regular periods. The sad thing is, my doctors are quite sure that with all I have going on, getting pregnant will likely be a challenge. I try not no worry about this too much these days since it's not time for me to try yet. However, I am working on a more healthy outlook because let's face it, healthy periods are a part of "healthy womanhood" amd I need to learn to embrace it. I am getting older and this is important. What if down the road I am thirty years old and still crying when my period comes??? That is just plain ridiculous!! But, for now, it is what I feel like doing, and crazy or not, I am scared to death of it. That's just the truth of how I feel. Well, currently, I am on some hormones, and it is now the "time" for me to be expecting my period. I am in A LOT of pain, and I am scared!! I know in my head that I should be ecstatic if I start my period- it means my body is working and it's (possibly) fertile and things are looking up (maybe). But instead I am (legitimately) dreading the pain and already wondering if I have gained too much weight and even wondering how bad I want my health. I really have to work on this. I brought it up to my therapist yesterday but it didn't seem helpful. Ugh. I would love any thoughts or feedback on this.

Blah, blah, bladder...

So, now there are some major bladder issues, apparently. I am way stressed and losing sleep over all of this mess. I guess there has been blood in my urine for the past few months (yes, I noticed, but my dr. didn't mention it). When I approached my dr about the issue yesterday she was alarmed and was clearly embarrassed and trying to make up for not mentioning it. She took yet another urine sample which had blood in it once again. She would like to rule out contamination. Again, I am not sure how it would be contaminated with blood several times when I am not menstruating or having sex, but now I will be having a catheter (yikes!!!) inserted into my bladder today to take the sample straight from my bladder. I don't know if any of you have done this but I had it done over 10 years ago, and I remember it VIVIDLY-total trauma!!!! So, today I will be loading up on the Percocet and having the most painful thing EVER! :( I will let you all know how it goes... It is just so hard not to worry. *frown*

Sweat!!

Ugh, so now I am experiencing some major hot flashes during the day and I am waking up at night with wet sheets and hair- literally, wet. What the heck is that all about?? The pain has been terrible last night and this morning. I have come in to work for a couple of hours and then it's back home and to the hot bath with lavendar epsom salts and my bed! I am really getting sick of this! It sucks so bad. :( I will be seeing my gyn tomorrow, but I am not feeling very hopeful for answers. I am just hoping she can write me a script for something that will actually relieve the pain! I don't even expect to be out of pain completely, but even a low level of ability to function outside of bed would be great. I wish I could figure out what all of this sweating is about... it's gross and it's giving me anxiety.

The BATH!!

I found a new love!! The bathtub!! Oh my gosh, it has never felt better! For the past three days the hot bath has relieved my pain (temporarily). If I could move into the hot bath and bring waterproof books, my phone, movies and pillows, I would stay in there constantly! I recommend this for anyone who is suffering. It hasn't been this way in the past but this week for some reason the bath has worked miracles for me!!

Ahhhhh :)

OUCH!!

So I woke today feeling extremely hopeful this morning! It was the third morning in a row that I woke up in less than moderate pain in weeks. I am supposed to be running an 8k in the Shamrock Run this coming weekend and I have not been running in 5 weeks (yikes)!! I was really excited to get back to it this afternoon, however, here I am, at the end of my workday in a whole lot of pain. I don't know what it is, but sitting straight up in a chair just KILLS me by the end of the day! Does anyone else experience this??? It's like there is a knife stabbing through my pelvis. I can't take it. I guess the running shoes will have to wait for tomorrow (sigh). Time to get home to my bed and heating pad [insert swear word here] I am sooo disappointed.