It’s Not Fair

Yes, friends, life is not fair. We know this. And my problems are first-world problems. But still…

I’m sick and tired of being sick and tired–and in pain.

I have a mouth full of mouth ulcers. Under my tongue. On the inside of my bottom lip. I even get them on my gums. They burn every time I eat something–anything. To keep them at bay and to improve my gum health, I have been using the water flosser with a solution of 1/2 water and 1/2 hydrogen peroxide, every night. My new dentist suggested that, and it has helped. And I rinse with Chlorhexidine gluconate solution. I want to get my gums healthy enough to do invisalign braces (had braces as a tween, teeth are crooked again). But I’m not sure I’ll ever be able to achieve the level of oral health necessary to move forward with invisalign.

Then there is the Rosacea. It’s a constant battle and I’m losing. My face is red and blotchy and I have some acne. I don’t want to use oral meds, ever, because my liver has enough to process already. But the topical stuff isn’t really working these days. I don’t like how it looks but I rarely bother with make up. Sometimes I wonder what people think when they look at me. I don’t look at myself much. I used to be vain.

Then there’s the more serious stuff–my colon is bleeding. My abdomen is swollen and tender. I’m going to the bathroom frequently throughout the day and every time it’s explosive bloody diarrhea. It smells like something died. And I’m sitting on the toilet straining, my hemorrhoids bulging inder the pressure, while my toddler and my dog get in my face–toddler opening all the drawers and playing with her bath toys, while I am practically incapacitated on the toilet. And when each “episode” is over, I go to lay down on the couch. I am depressed/angry/exhausted. And then BG wants to climb on me, or jump on the couch, and all I want is a moment of peace and for my hemorrhoids to stop throbbing. A lot of times I snap at her. All she wants to do is play with me, and in those moments all I want to do is be left alone to soothe myself. Every time I see blood in the toilet it upsets me–it’s an undeniable sign that I am sick.

I’m sick and I have to admit that I’m sick.

I HATE taking big-gun meds and I’ll deal with these symptoms for weeks in hopes of them resolving. But I’m so tired and it hurts and “resting more” is not an option. Mr. MLACS has been working 7 days a week, 14+ hour days (I see him 2 hours per day) and I have a toddler 24/7. So I waved the white flag and left a message for my GI nurse this afternoon, asking to begin Uceris (steroid specifically for UC). Haven’t heard back yet. If they insist on an office visit (so pointless) then that’s a 2hr commute each way. I have seen them 2x in 6 months so I hope they don’t insist I be seen. I wish they would just bill my f*ing insurance without wasting my time and *limited* energy.

There’s more…

I had sex 10 days ago and I tore, and it still burns when I pee. It’s not healing. This might be a symptom of my Lichen Sclerosus or maybe my hormones are still whacky from breastfeeding (maybe I need estrogen cream). It’s frustrating to only rarely feel up to sex. Because I’m sick. Because every time we have it I tear and am in pain for days, wincing when I pee. This time it’s been 10 days so I took a mirror and looked–there is a pea-sized HOLE next to my vagina. A huge, gaping tear. No wonder it hurt as bad as it did after giving birth. I might need stitches. I have to call Dr. Soul’s office in the morning and see about getting in today or tomorrow. It’s a f*cking 50 minute commute each way, but I definitely need to be seen.

People don’t know what my life is like. I got up today and went to spin class. I took BG to the Little Gym for her class. I made lunch. I layed down with BG for nap but didn’t sleep. I went to Walmart. I made dinner. I gave BG her bath. I took a shower. I am able to do all these things, and I AM grateful. But being ill is a burden and it makes everything So. Much. Harder. I struggle to have a “normal” day like this. I cried when I saw the hole in my vagina.

You see, I’ve been saying to Mr. MLACS for days that either I am pregnant, or I am dying. The animals and BG have been super clingy. The dog follows me room-to-room (he never does that). I’ve had vivid, strange dreams. Backaches. Cramping. Some yellow cervical mucus. Feeling dizzy. More hungry than usual. WAY more emotional. And we weren’t even TTC this cycle, if it did happen then it was a long shot, but I haven’t felt like this since I was pregnant/doing fertility treatments.

But I cried tonight after I saw that hole in my vagina. All my “pregnancy” symptoms are just symptoms of my health issues. I’m NOT pregnant and I shouldn’t want to be, given all the issues I have right now. I don’t want to take Uceris (or worse) while pregnant. But yet, I’m sad. And I feel stupid for symptom-spotting (that is some rookie sh*t).

What the f*ck is wrong with me?!

This sh*t is not fair.

XOXO,

MLACS

**I don’t need anyone to tell me they are sorry–I didn’t write this for sympathy. I wrote it because I need to tell my story. Maybe it will help someone else. I hope something good can come from me sharing.

 

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22 thoughts on “It’s Not Fair

  1. Oh friend. My heart hurts reading the one rotten thing after another and the exhaustion and broken feeling it all brings. I hope the GI just does the humane thing. Also I expect BG and the animals know you aren’t well. Radar. But it doesn’t help and feeling stupid is just insult upon injury isn’t it. Ugh.

    • Talked to my GI nurse and noboffice visit needed–yet. I started the Uceris this morning before I even heard from her because f*ck it, I’m trying to take my toddler to the zoo and I need to stop running to the toilet every 30 minutes. Luckily, she told me to go for it and let them know how I’m doing in 2 weeks. If I’m not better then I need to be seen. That’s totally legit and I’m good with that. Fingers crossed the Uceris works. I took an anti-spasmodic, Uceris, and a Vicodin and toodled around the zoo with a group of moms who are none-the-wiser about my condition–I “pulled it off” as a regular (not sick) person today (pats myself on the back). But now I need a f*ing nap. XOXO

  2. Thank you for sharing this, it’s too easy for some to take health for granted. It all sounds completely miserable and I am very amazed and impressed at all you’re able to do while in pain and uncomfortable. I know I would be a total wimp about everything. I’m glad you’re taking the initiative to get treated, and I hope these issues start to resolve soon. Xoxo.

    • I am a wimp! If I could dramatically wilt onto a couch like Scarlet Ohara, lament my situation and have people cater to me you bet your sweet ass I WOULD. I want to be taken care of. I want to lay in bed and watch tv with my cat curled up next to me (like I used to do, before I became a Mom) and order take out, and sleeeeeep. But no. Mr. MLACS is working like a dog and my greatest luxury is a shower. C’est la vie. XOXO

  3. Wow. Your honesty here is admirable. I am so sorry you are dealing with all of this. Not fair at all. I wish there was more that I could do other than just offer my virtual love and support. I will pray hard, friend. And I really hope you see some major improvement soon. xo

  4. You’re right, it is not fair. I know they say we all have our own battles, but too often you can feel alone in yours because nobody else seems to share their struggles and all we are left with is viewing the “perfect life” snapshots they share on social media. This is real and raw and I think really speaks to others in their own different struggles. I’m sorry you are dealing with all this, it seems like it all just piles on. Wishing you much strength. xxx.

  5. Wow girl! That’s intense! I’m sorry you have so much going on… in regards to the vaginal tearing, do you think you may be dealing with vaginismus? I had it for many years until sex became completely impossible. My NP recommended for me to use dilators and they really helped me! I can tell you where I got them etc if you are interested. I know what it is like to suffer during intimacy. It’s such a bummer. 😦

      • Let me know if that link doesn’t work. Those are the dilators I bought and DH and I agreed, it was money well spent! I think there are recommendations on the website of how often to use them. I found that once every could days was best. You just place it slowly and carefully, concentrating on not tensing up. If it hurts, don’t force it. Definitely use lube. Then once it is in, you just leave it. Maybe 15 minutes… and you aren’t trying to have sex right after this, because you are letting your body just get used to the presence of the dilator. Eventually you can use them right before sex to help your body prepare. I hope this info helps you! It was a total game changer for me. I never knew sex didn’t have to hurt! I tore once very badly too in several places. Horrible experience. 😦 I just thought basically every woman hurt and that was normal. :/

        Btw, You can delete this message if it makes you uncomfortable having all this on your blog. 😉

      • I think it’s important to share this kind of information! I would only delete it at your request. I will definitely show DH the dilators and I’m sure he’ll encourage me to order them 🙂

      • Yes. When I showed DH that website, it was a total “ahha” moment because we finally could see that the problems we had weren’t our “fault” and it gave us hope I could get better eventually!

  6. Thank you for sharing. It’s a real, raw picture of what it must be like living with a chronic illness. It definitely helps me, personally, become more sensitive and understanding. You are a toughie! HUGS

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