Chronic Tonic at VOTS-Another Lost Weekend

Another long weekend, but somehow it felt even longer. I meant to have some fun with my boys but that didn't happen. I spent the entire thing either curled up in a ball, glazed in front of my laptop or mucking trough a required chore. I don't really remember all that much of it, to be honest. Cleetus did some heavy cleaning for me and that was lovely, much appreciated. But other than that? Gray haze.

The thing about these headaches is that I'm always in some level of pain, but it's the days where it kicks into high gear, won't allow me to keep the pain pills down or be much affected by them if I do that get me. And then it just drags on.

It started Friday night, as I was enjoying the music video party, I knew it was coming--I could smell the deodorant that my husband had put under his arms that morning as if he had bathed in cologne--that's my first warning sign, a ridiculously hyper-sensitive sense of smell. I say warning sign like there's anything I can do besides take my pain meds and hope it's not too bad, because that heightened sense of smell says--go! go to bed, you're about to be in a world of pain!

Cleetus wakes me too early on Saturday and I am wicked pissed. He's full of adrenaline from cleaning and doesn't realize he's being so damn loud.  He tells me to go back to sleep, but does not understand that this is impossible. This headache won't let me. It's worse than any hangover, it's like adding a brutal assault of  cold electric head strikes bolting above my eye and at this point the weekend slips sideways into the haze. I know I made potato soup for supper, I remember my mom picking bacon bits out of it...the rest of Saturday? I don't know.

Sunday--total blur. My sister made supper, as she often does on a Sunday and thank God for that because I am useless. The boys are playing, they are noisy, noisy!  Shit. Just go upstairs, they are having a great time, don't yell, don't yell at them for being kids. They didn't sign up for migraine mom. Now I feel really bad. They are off tomorrow, maybe we can do something fun, like I hoped.

Monday brings no relief. Dan is content to spend his day off watching movies and drawing and Collin has his computer and his acting class starts today, but the things we had planned for the weekend? Pfffft. The big bag of science sits on the shelf mocking me. There will be no rainbow in a test tube today. No gravity goo, no insta-snow, no water balz! The only good thing is that I get through the day without freaking out on anybody.

This morning I sat on the front porch with Dan and waited for the bus like always. The cold plays across my face and lights up my head like a pinball machine. We have a good chat and he's in as good a mood as I've ever seen as the bus pulls up. I head into the house. In another hour the house will fall silent and I will head upstairs and try to sleep, pray for this to end, break, just fall below a dull roar. 

Is it Tuesday already? An other lost weekend. It was a long one.





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And how are you this evening?

triv33's picture

I'm happy to report that it has let up somewhat and me and the boys have some gnarly marbles going in a test tube and various wells of a mixing dish as I type~

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I'm so so sorry you experience this

UnaSpenser's picture

I can relate to the overwhelming pain. Still, to hear someone else's story just brings up so many pangs of sympathy.

I'm glad it's subsiding. May it stay away for a long while.

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I can relate

UnaSpenser's picture

I can't tell you how often I worry that I've cheated my daughter out of a fulfilling childhood.

I had visions of how I would be a mother. Visions of cooking for her and with her. Visions of learning to sew together. Visions of taking her places. 

We used to do that. For the first few years of her life. Regular jaunts to museums. I would take a dance class with her. I even took a trapeze class with her, once. Hiking. Swimming.....

Then all this shit struck and I've been unable to do those things. She's a very self-contained, self-possessed child. She does a great job of keeping herself busy and entertained. Still, it's not right, all the limitations on her life because of my health.

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my weekend was partially lost

UnaSpenser's picture

I've been struggling a lot. Going downhill ever since my immunoglobulin treatments stopped when we had to switch my health insurance to MAHealth. That was August. I'm supposed to get infusions weekly. I'd had only two since then. Both shrouded in the nightmarish world of a case manager who is OCD and fighting cancer. (both pieces of information she revealed to me as I sat with a dry catheter because she was freaking out that the pump she insisted we use - even though the doc does not want them to use a pump - was broken.)

After some finagling, we've moved me to a different agency, where I learned immediately that I was on the "wrong plan" for what I needed. Once we got me on the right plan, the treatments were approved within 2 weeks. I had my first one yesterday. It was, thankfully, uneventful. Just the normal things you have to put with when you're on an IV for 7 hours.

But, before that....

I got a last minute call from a friend in social desperation. She had two tickets to a "ball" and had lost her date. She really wanted to go, but not alone, because her ex-husband was going to be there with his new wife. I love to dance. I rarely ever dress up any more. But, I knew I would pay a price for even a couple of hours. And I did.

I tried my best to keep my stimulation level down. I rested most of the day. Didn't go too crazy getting ready (although I really needed a nap after showering, dressing and trying to do something, anything, with my hair.) There was a dinner. I ate my meal and then left the room for a while. I skipped dessert. (Turned out I was able to grab that later.) I went back in when the dancing started. It was a real ball, as in ballroom dancing. It was really just this community's annual excuse to dress up and dance. So, it was freeform and people danced by themselves or in groups, whatever. 

I would dance a bit, then take a break. The event was in a hotel, so I was able to find quiet space to sit. Dancing didn't start until about 9. I left before midnight. I didn't drink any alcohol. I drank plenty of water.

At 4 in the morning, I woke up in excruciating pain. My ears had been hurting - physically hurting on the exterior and sonically hurting in the interior - before I even left. Now, they were so sore, I couldn't put my ear on the pillow without screeching. And there was such loud screaming in my ears that I wouldn't have been able to sleep from the hyper-pary in head that I didn't even get to be a guest of. I was the person next door trying to sleep while the neighbor has the heavy metal loud enough for a concert at a football stadium.

Then I noticed my legs. For a moment, I wondered if I had broken something. The slightest motion and I was pushing the pain meter off the scale. What the hell? It's not like I went wild out there or anything. I hobbled to the bathroom and got out this prescription pain salve that the doc makes me keep around now. I had to put all over my ankles and up over my knees, just so I could not be paralyzed.

I never got back to sleep. I had had about 3 hours and that was it. My ears and the pains in my joints were not going to let me sleep. 

But, i can't recall what I did all day Sunday. I was in a haze. I think I managed to make sure my daughter had food. I also think I napped on and off. I hope I did, anyway. Other than that, I can't recall a single thing about Sunday.

Monday, the nurse showed up at 10:30am. Thank goodness. IV pain meds are a sidecar to my the immunoglobulin. I hardly recall the treatment because within about 30 minutes, I was out cold. She woke me at 5:30 to take out the catheter and give me my standing orders. (It's always the same little speech. You'd think after two years, they could let me sleep through it. But, no.)

I think I did some reading last night before falling back to sleep. I did wake up feeling a bit better today. Still, spacy and sore, but managed an actual, somewhat functional day. (We'll just ignore the comical mishaps which are now a part of my status quo and call it 'normal'.)

The nurse is back next week, barring any more MAHealth bureaucratic bullshit. And in a few weeks, I may even have my regular nurse back. That would be comforting.

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Isn't it awful that no matter how careful you think

triv33's picture

you're being you always pay? It sucks! I wore heels to a wedding, not very high either--What a mistake! I was the little mermaid the next day-each step like a dagger!

 I hope once your treatments get going on a regular schedule again you can start feeling a bit better.

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I'm sorry, triv33

priceman's picture

That really sucks. I have different problems which are more psychological for me lately. Like putting off asking for the grand it's going to take to get my wisdom teeth pulled and then being treated like a POS by the ol man. Oh you need your wisdom teeth pulled,. You need to get a job son. You're not worth anything and you don't help anyone out(lies).

Oh well. he can afford it, but it's the same reason I don't ask for health insurance which will be detrimental eventually but psychologically i can't deal with that. I do want a job but a McJob would just make me unhealthy physically and mentally. I at least am able to find some peace with the time I have allotted despite not having a future.

But these are my smaller issues. Still sucks though. But I am glad the headaches have subsided for now and there is quality time with the kids for a bit.

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