Oh, fun in the ER

Time to update again.

I have been completely under the weather the last two weeks. Between a nasty endo flare, and something wrong with my digestive system, I've been doing a lot of sleeping and pain management.

I visited my general Dr for pain in my stomach and upper intestine. He noted it was gas from the x ray and gave me Linzess (ibs medication) and laxatives. A week later I was still bloated enough to be seven months pregnant and having horrible bowel issues. I was becoming dehydrated, weak and losing weight quickly. Then the pain started to be more in my right side. I again saw my GP and he thought it could be my appendix, so off to the ER Friday to find out what the heck was happening.

While there, in the waiting room my endo decided now was a good time to kick in the pain. The staff was very helpful, they got me back as soon as possible and took all my vitals. My bp was high then started dropping. I was given an iv, they did blood work,urine samples and vitals. Then put me in a room and the Pit Dr came to see me. He pushed on my tummy and sides and had a very sad look when he saw endometriosis on my file and kept saying, "I know this hurts when I push but I need to." He ordered full work up on blood, urine and a ct scan.

My blood work was good, my liver, pancreas and kidney function was good as well. But I was severely dehydrated, two weeks of diarrhea will do that to you. So they started IV fluids and we waited for the Ct scan to happen. They gave me three shots of morphine, I won't ask for pain meds, but they were watching my heart rate go up when the pain was getting bad and give me meds. They also gave me Zofran. Then off to the CT Scan. I couldn't remember if I was allergic to iodine or not, so they did the dye and iodine, took the scan, then moved me to my room.

Ten minutes later they gave me a does of benadryl, I was allergic to the iodine after all. I did okay then the itchy started again, they dosed me with Atarax to see if it would help. I started feeling less itchy and my hands stopped swelling. They gave me another shot of morphine for the pain while waiting on results. I was hurting so bad from the endo I was actually shocked. I never go to the ER for the pain, I just treat at home and breathe through it. They gave me three doses of morphine, and two of percocet and STILL I was feeling the endo pain as though I'd taken nothing for pain at all. It did kill the pain in my right side and stomach from whatever was wrong there. But it scared me that morphine took care of kidney stone pain, but did nothing for the endo. YIKES

The results, CT Scan showed my appendix was fine, but my stomach and first part of intestine were extremely inflamed. They found nothing in my blood, no reason, so they do indeed think it is Crone's Disease. They kept me a while longer to be sure I was not allergic to the meds they gave me and watching for a secondary reaction. I was placed on oxygen, given more Atarax, because my oxygen dripped to 82, after that they administered epinephrine. My oxygen came up to 97, my fingers were no longer blue, so they dosed me for pain on the way home and let me leave. But I had to promise to see the GI as quickly as possible.

Now, I will say this, I know we endo girls catch a lot of crap when we go to the ER for pain and to see Dr's. But Saint Francis of Tulsa was amazing. The two nurses, the Dr and the PA all were so kind. They understood my endo pain, were so very kind and the PA kept checking on me and giving me meds and warm blankets to comfort me. I was very grateful to them all and will be sending a thank you basket of goodies to them. It is not every day you meet such kind and caring people in the ER.

So we came home, Scott had the kids overnight, so I just went to bed. Saturday I discovered I am allergic to the ibs meds they sent me home with, Bentyl. I ended up having an extreme reaction, and was unsure if it was the Bentyl or a secondary reaction to the iodine. I didn't take it again, I am to take it three times a day, until this morning when the reaction was gone, and yup I am indeed allergic to the Bentyl. I get to add two new things to my growing list.

So Sunday,I woke up late, slept like a rock once I fell asleep, but was able to at least make my bed. I was given the ok to try soft food, soup, to see if my system can handle it. Well, I will be on jello a while. My system did not handle the soup at all, and now I'm all red and itchy from the meds. Ick. Later that day I ended up back in the ER for allergic reaction to one of the rx's they sent home with me. Epi Pen, Steroids and antihistamines and I'm doing better today!

On a positive note, Ruby the Endo Roo will be here soon! Ruby was made by a wonderful endo sister that is trying to raise awareness for Endometriosis. She takes Ruby everywhere with her and when people ask her, she explains endo to them. So many of us wanted a Ruby of our own that she started taking orders for us to get one. Mine was shipped out Saturday! I can't wait to get her, to help spread the word! She will be going everywhere I go, and I have designed cards with Endometriosis information to give anyone that asked about it. Spreading the word, fighting for awareness, and a better future for the next generation of women.

I hope you are all enjoying your summer, as much as possible. I've not really been out too much this year, but I have made myself a promise to go out and get some sun everyday,even if only for 15 minutes.

All my love,
Lynda

Ruby The Endo Roo

One of these three will be here soon!

Photo published with permisson from

  Ask Me About My Endo

Reflection, Self Awareness, and fearing for the future.

Hello my lovelies, It has been a while, this I know. But as you all know, it takes a lot to actually sit down and type when flares hit. Thank goodness for my mini desk,tablet, and Bluetooth keyboard, else this post may not be made.
What's happening? What's been happening?

Well, as my last post stated I had an ultrasound on the 17th. I am also trying one last ditch effort to keep my ovary by trying new meds. Basically, I am giving my poor Dr a chance to feel he did everything he could before he took it out and changed my life for worse and may not even help with the endo.

Ultrasound
I arrived at the Dr for my ultrasound, and it took a long time. They were having pc issues, so I had to wait. While waiting and talking to a friend and nurse there, a bird flew into the window near us and slid down the window, RIP lil fluffy guy. I told her I though maybe this was a sign I should not do the ultrasound. Finally, they were able to get me in to take a peak at what has been going on. Now before you ask, no endo can not be seen on ultrasounds, scans or even x rays. The only way to see it, is surgery to see with the human eye.
So we began with the traditional ultrasound, on the lower pelvic area, to locate the lonely ovary and to look around a bit. This was difficult, so they went to the not so fun trans vaginal ultrasound. I started to panic at that point. I hate those being done, for whatever reason. I tried to relax as I laid back and let her do her job. Just inserting the wand had me in pain, she put a numbing cream on it and waiting a few minutes and tried again. But the pain was not local, it was internal. I began to breathe through the pain, and she kept telling me how sorry she was, but she wanted to get pictures of everything all over. At one point I began to shake from the pain, she brought in a nurse to help me by holding my hand and helping me breathe through the pain. 30 minutes later they were helping me redress and explaining the first look findings of the ultrasound.

My right ovary, my only ovary, is stuck to the pelvic wall. This explains so much of the pain in that area, and the feeling of my pelvis/hip feeling like it is being ripped from my body when I sit then stand. It also explains the pain that drops me to my knees when I ovulate. She did not find any cysts, thankfully, and upon first look no sign of endometrial cancers or masses.

I was instructed to drive straight home, take pain meds and rest. She informed the Dr that she'd not encountered anyone have that much pain from the ultrasound. Thank you endo for making my life so unique. Later that day when I woke, I could barely walk, lifting my legs was all but impossible. The pain lasted a few days.

Emotionally
I came to a very real, and very solid understanding that I think I've been holding off since this all started. I am not a normal functioning woman. I am not even a fully intact woman. I can not have a child if I wanted to. When I looked at that ultrasound on the screen, it was 3D and nice, but there was nothing there. No parts I had before, what made me a woman is gone, I've gotten so used to seeing those parts in many ultrasounds, that I missed seeing them. They are gone, and they were taken with a promise I would be better. Now I don't have my lady parts, and I am worse off then I was when I had them. They were mine, and they are gone. I am young, and I do not have the necessary parts in my body to create what my body needs to stay healthy.

Another understanding came, and it's not a huge one, but just another thing lost to this damned disease. If that little wand caused so much pain, up to now not being able to have sex has been a mystery, now it is a solid no way in hell. So, endo gets my lady parts, my hormones, my day to day life, my ability to be active in my life and with my children, my job, my sanity at times, and even takes my ability to function as a lover.

These are not easy things to come to terms with. No one could just say, Oh s well it's okay, I'll just live with it. Bullshit, I refuse to just live with this. I refuse to let this grow in my body and consume my lively hood.  I am young, I am a mother, I will regain my health, somehow. I just don't know how yet. Until then, I'll be curled up on the sofa with my blanket, my poli, and holding on to my sanity.

Some Endo Tips

Finding the time, where do I find  time? Though I feel I am doing nothing, I feel I am always busy!

With my children out of school on summer holiday, things get all messed up and schedules are completely off. Summertime brings insomnia to me. I tend to stay awake until three or four a.m. and wake later in the morning. That being said.

This cycle of Endo flare of was designed by a demon, I swear it. The pain, the exhaustion all of it has been mortifying. Pain pills, hot bathes, heating pad (caused another problem I will explain later) and everything I can think to dull the pain so I can at least rest.

My lower back, hips,pelvis,right flank,entire lower abs, and legs have been aching in this battle. At one point I was ready to just remove everything and replace them all with plastic parts. I just couldn't find a 3D printer! I am on week two of Sprintec, taking Percocet,Promethazine, an Zophran if they nausea becomes extremely bad, which it has been horrid.

My frustration is building with things I can't do. I could not lift my bottle of water last night because it was too heavy. So I ended up getting a small glass to put my water in. Every time I moved, pain shot down my side into my pelvis and down my legs. It is times like these that I get upset, and get frustrated. Luckily, I have people who understand, and start to pick me up when I start to get down.

Now, today I wanted to share some information on help with issues having Endometriosis can cause.

Toasted Skin Syndrome, yes it's a real thing, and it was discovered on my lower back. Why? A year and half of using a low setting heating pad. It's a horrible looking rash, that may or may not go away. So I'm no longer using my heating pad, so I am increasing my pain medications. Just another thing Endo has caused. But, I'm not giving up. I am simply taking steps to clear the rash, take good care of myself, and learning what I can and can't do. For any endo sister with the Toasted Skin Syndrome, I will place a link to pics of it here, and I will tell you, the most recommended way to help rid yourself of this is to take away the heat, exfoliate as much as possible, and use Bio Oil, found at Walmart, Walgreens and other stores.


Help with bloating. Many of us get bloated in an instant, even after just a drink of water. Most suggested ways to help with Endo tummy were water pills, cucumber-mint-lemon infused water, and gas pills. Though please do not do these things thinking it will make you seemingly five month pregnant endo tummy flat, wrong, it will just make it a little easier to deal with. I have found some extremely awesome endo tummy day pants! I will post the link here, they are actually scrubs, but a very giving material, and awesome drawstring only waist. Then I ordered tunic tops to help as well. Yoga pants a few sizes too big also help, and I have a collection of shirts that are two to three sizes too big as well. For summer, I purchased a pair of maternity shorts and a pair of maternity Capri pants for those days, and pair them with a long tunic top Avoid too much caffeine on those days, and try not to wear tight clothing. It will only hurt more. Also, bending is a major issue on those days. I have found if I bend at the knees , not my waist on those days it helps. Get up and move around, difficult I know, but it actually will help a bit.

On days when getting up and down are difficult, I have solved this issue by having a tote near me. I have a tote that I carry from my room in the morning, to my sofa or where ever I am going to be. Containing, my tablet,charger for phone,small bags of meds I may need,lotion,socks,pen, notebook, my kindle,chap stick, hair ties, and anything else I may need during the day. So I have it in one place, and I don't have to get up and down on the harsh days of moving. Then at night, I take it to my room and can use what I need from my bed as well. I also have a wooden lap desk big enough for my tablet/laptop with a drawer for things I might need, so I can work from the sofa when the PAC chair is not comfortable

Helpful links as mentioned above

Comfy scrubs

Toasted Skin Syndrome Information

Bio Oil

Mint, Lemon, Cucumber Water Recipe

For more help with Endo issues Endo Hope

Return of the Ugly Truth about Endo

The demon has returned, and it is back with a vengeance. I started Sprintec Thursday night, and I felt great Friday,Saturday and Sunday. I even went out all day and evening Saturday and was fine Sunday. I had forgotten what that felt like!

But today, as I stepped out of the shower, the familiar ripping, tearing feeling shot through my pelvis, as though my leg fell off. As I dried myself noticed my back was sore, my kidneys were tender, my pelvis hurt, and I had spasms and cramps starting. Then, ten minutes later as I was in my room, the pain hit on the right side shooting across to my lower abs and to the floor I went with a wave of nausea and pain searing through my body. Hello endo flare with my cycle, how I have missed you. NOT! Now, I'm on the sofa, feeling like my insides are being twisted, pulled, and pushed out of me. The pressure is like that of back labor and later months of pregnancy. My body hates me today.


So, today, my entire body is affected, from exhaustion, pain and nausea. But, I had three days of no pain, three days of no worry, three amazing days. So here is to hoping that after this cycle the sprintec will hold my next cycle back and maybe, I will get a week or two weeks of no pain.


Until then, my fav Winnie the Pooh blanket,hot water bottle for tummy, heating bad for lower back, pills for nausea, coffee for my headache, and encouragement from my support team. One of which is the most unlikely, in my thoughts, but he is doing a great job making me laugh and find humor in the situation. :D

The laugh is on endo, because I had three days of pain free fun, and I used them wisely, and will hold fast to the warm memories and laughter of those three days of no pain, no bloating so I cold wear regular clothes, and enjoying a movie with my family pain free, and some sun with my family pain free, and had a wonderful time!


Hang in there my endo sisters and fellow spoonies. For though hell has come knocking on the door again, I will enjoy the sweet taste of pain free three days, that held awesome memories.


Sincerely,

Gloves up,keep fighting, Endo Girl