With all the awful IC flare ups, I am struggling to find things to be thankful for. I like to express what I am grateful for because I think it’s so important to realize that when we are in a negative head space that there are still some things that are a blessing. Even if you have to really, really, rrreaaalllllyyy dig deep to find that blessing.
(PC: The Meta Picture)
So I know the picture is more related to periods, but I feel like this is my life constantly. Except I don’t if it’s more my IC or Endo. I had a laparoscopic procedure in Oct. 2012 due to pelvic pain. That’s where they found several ovarian cysts, (one the size of my ovary) Endometriosis and an adhesion. The Endo was all over, including my bladder. So I’m thinking and hoping that the Endo is on my bladder instead of my symptoms just being from IC. Because if the constant pain is from Endo then I’m seriously just going to beg them to take it all. Remove all the crap that is making my life a living hell.
If it’s not, and the issue is the IC I will more than likely have a very large meltdown. Feeling like this is overwhelming and contributing to my depression getting worse. However, I am very open and honest with my husband and Doctor and I am managing the depression okay. Chronic pain, certain conditions/diseases just suck the life out of you. I am trying. I really am. It’s just hard.
So, back to the thankful part, I know there hasn’t been anything positive so far. I am thankful that we have amazing insurance! I’ve had good insurance, crap insurance and no insurance before. Since I’ve been married, our insurance has been incredible. It’s so appreciated. Especially with all my issues. I started a new medication yesterday, Uribel. It’s a 4 time a day pill. I’m not sure if it’s new or not, but I have tried every med for my IC with little to no relief. I’m hopeful this will be one that helps me feel better.
A major negative to this med is that it can cost an average of $300/month. That is ridiculous. At the same time, I would willingly go broke if it meant I got some relief. I would also cut of my arms at this point to get relief. I know that good insurance is hard to find, but we have a great plan, which allows me the opportunity to explore the numerous medication and treatment options to get me feeling like a normal human again.
Oh, and I fun little perk of the medication is that it turns my pee blue. Not Windex blue, more of a happy, cloudless day blue. So when I do pee it is a fun little surprise since I’ve never had blue pee before. Pretty thrilling for the moment.
Well, I am gracing you all with yet another post about my bladder issues. I came into our guest bath early this morning so I wouldn’t wake my husband or my child. At first I took a bath. Usually this helps to somewhat ease my irritated bladder. No relief this morning.
Now, I am still on the toilet. Aren’t I just glamorous and sexy? My husband sure won a prize with me. Not even joking, I have been sitting here for 2 1/2 hours waiting for pee to fall out of me. I’m also waiting for my Vesicare and AZO to do their job. The reason I’m not in bed is that while nothing is coming out, I am in desperate need to pee. It feels like there is a fire poker up my urethra. Being in bed doesn’t help. I can’t sleep because of the burning and urgency feeling.
I did get some buddies to hang out with me. I’m talking of my glorious cat children of course. They snuggled up in the closet letting me know I’m not alone.
These are some good guys. Toggle and Maddie. I got lots of cat snuggles. Then they got into a scuffle and left me alone, with my crappy bladder and my cynical mindset. Feb. 4 please hurry up! That’s when I’m seeing the specialist. I have an appointment with my PCP for this Wed. Afternoon. I honestly don’t know what they could possibly give me or do to me that would help. I already explored so many different options and treatments with minimal improvements.
(PC: The Meta Picture)
I know the picture about is about period pain, but this is close to how I feel with my IC and Endometriosis. Constantly. Having a chainsaw cut through me might be a welcomed guest to my lady parts instead of the constant pain and irritation. I don’t think I remember what normal feels like.
I think I’m going to invest in a padded toilet seat. I know those are usually for the elderly. But I sure don’t feel like I’m 32. Plus, I’m always on the toilet it seems so I might as well be comfy. I feel so bad for my daughter. I’m not a fun mom. I’m a tired mom. I’m a cranky mom. And I’m a mom with little motivation to get out of bed and keep her entertained and have a wonderful childhood. That might be almost worse than the pain. The sadness I feel that my daughter might one day resent me because I was too tired, too sick, too whatever to give her the childhood she deserves.
She did take a bath next to me while I was just sitting here and we chatted once she woke up. So there is that. Quality bathroom time I guess. Mother of the Year award clearly!
At least the cats find me somewhat entertaining.
Toggle on my lap.He is willingly lounging on my leg. Proof that he does love me! Well, it’s back to reading. The one positive about this whole IC, Endo torture is that I’m getting a lot of reading in, which I love. See my cynical perspective isn’t completely missing. At least not yet.
My husband apparently feels so bad about my pee problems that he is now suffering from kidney stones. We are quite the duo. Poor guy has been struggling with significant pain for a little over 2 weeks. He’s been to doctor countless times and even the ER and he keeps getting the same answer that it will pass soon. He is on a lot of pain meds. Poor guy, he looks miserable. Hopefully it will pass soon. I guess it hurts when it’s traveling to the bladder, then he is supposed to get a break until it travels to his urethra. From the urethra until it’s completely passed is said to be extremely painful. The good news is that once it has passed he is supposed to have instant relief and feel better.
My hubby hates needles. And I mean HATE. He is willing to go into the hospital again to have IV pain meds or even have surgery to get the stone out. He is so miserable and it’s pretty sad to watch. He has also been so sweet because he told me he gets my bladder pain. Oh and he gets to pee into a strainer to keep the stone so the doctors can determine what type of stone it is. I didn’t know that was a thing or that there was more than 1 type of kidney stones.
And of course I am still in an IC (interstitial cystitis) flare up. The same one that has been going on for what, the past 6 weeks? This is hell on earth. I think that I would take getting repeatedly punched in the face by a large man than deal with this crap anymore. I started to keep a log of how many times I peeing a day. The average day is in the 40s. That is excessive. Especially, since I have to concentrate to pee. I can’t talk, be on my iPad or phone. I can’t pet the cats. It is serious business where I have to will my bladder to cooperate.
Staying in bed seems to be the only real thing that helps ease the symptoms, as well as hold my crotch. Neither of these options get me very far in my life. Any time I get up it feels like a heavy weight wants to fall out of me. It’s an instant need to urinate, but then it gets stage fright apparently and needs to be coaxed into leaving my body.
Then after I think I got everything out, I have to pee again. I can’t remember the last time that I didn’t feel the need to pee. It makes me sad because my daughter now goes around the house holding her vagina and says “ouch” or “it hurts.” Nothing appears to be wrong with her so I think she’s learning that behavior from me.
I hope this issue gets resolved soon. I would hate to constantly need to take it easy and then my daughter resents me one day for not being a fun or present parent. Stress adds to the flare ups. It also seems like if the wind blows the wrong direction I feel like I have a raging UTI. I don’t look forward to traveling because I usually get an IC flare up whenever I’m on a plane. I get a flair up if anything is too stressful. Ha! Life is stressful. Raising my toddler is stressful. Um..working at a jail is stressful. But I can’t and don’t want to quit my job. I definitely can’t quit being a mother. How am I supposed to avoid stress in my life, when stress is a part of life?
We went snowmobiling on New Years Eve. We had to cut the day a bit short. Going over the bumps did a number on my bladder. I also peed myself numerous times throughout the day. Don’t you just love the feeling of having no control over your bladder and peeing on yourself? I love it. It’s so fun….that’s another issue. I can’t engage in activities I enjoy without either getting a flare up or can’t find anywhere to pee. This really prevents me from even wanting to socialize. I think the mess that is my bladder and girl parts make it very easy for me to stay in my house and live in my bed. I try to get out, but as of late, I have to pee every few minutes that it’s not worth it to get out of the house.
One day there will be a cure for this horrid disease. I hope. I insist! This whole condition can make a person feel completely isolated and lonely. I don’t want to complain about it. I also want to get my frustrations out. Some good news is that I’m seeing a uro-gyno who specializes in pelvic pain. But my appointment isn’t until Feb. 4. But the Dr. is a female. And she specializes in IC and Endometriosis. And I have recently found out that you can get Botox to help paralyze some of the spasms that make the condition so miserable. I’m going to inquire about that. If I decide on the Botox I wonder if I could convince the Dr. to just put a little extra into my face. I mean, she already has the stuff and if you’re putting it one place can’t you just put it anywhere? I’m going to ask her. Hopefully she will be awesome and say yes. A girl can dream. Guess what I have to do now? I have to pee….again. I’m having so much fun! I think I’m the one keeping Charmain and AZO in business since those are the 2 most common things I buy.
Sorry this one is so late in the day, my hubby and I were in the mountains with some friends. I’m thankful that tomorrow is a new year. While I don’t love New Years resolutions, I am looking forward to a fresh start. I think we can have a fresh start anytime, but the New Year really gives us motivation for positive change.
I want to make 2016 a fantastic year. I want to be more gentle with myself. I want to have a semi-filter. Right now there is no filter, I would love to have this talent for my job. Sometimes I stick my foot in my mouth, generally not with the inmates/my clients. It’s usually with my co-workers. And I’m thankful that my filter-less mouth hasn’t gotten me into too much trouble….yet. I really need to watch it.
(Photo found on Facebook)
I’m thankful that after a long and cold day in the mountains that I am now snuggled up in bed and am warm. I’m thankful that my in-laws watched our monster…I mean daughter so we could play. And I’m thankful to have a husband who enjoys ringing in the new year by being asleep. This is our 6th New Years that we will have kept up our tradition of going to bed by 9 or 10. We’ve both done New Years, we don’t need to stay up late to celebrate!
Hope you all have a wonderful, fun and very safe New Years!