At The Bottom, Looking Up.

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I’m trying to stay positive. I want to be positive. But my body is revolting (joke). I have never been in this much pain before. If you remember, I haven’t had any Botox injections in my body since last June. This was a treatment I had been having for 11 years, every 10 weeks. I have also only had one migraine Botox treatment since then, October. So no relief from the neck and head pain or migraine pain since then.

My sleep is terribly fractured. Pain keeps waking me up. My current doctors don’t feel qualified to prescribe what they feel I need to help with this. I did sleep for 24 hours Friday to Saturday, so that was amazing. I did have to take a bunch of medication, still within my prescribed plan, to get there.

There’s a bunch more, but it’s a bore. The meniscus in my knees have gone. I would love to watch me walk as I dash to the washroom, because they are popping in and out like crazy. It must be hilarious.

The point is that I will be incredibly fresh when I get to the EDS Clinic next month. I will have had no treatment since October, just my meds.

I’m like a goldfish right now. I try to keep thoughts in my head, watch upbeat shows, save my energy for my husband and kids. I cry much of the time. I don’t even realize it, but the tears are there. Pain. Exhaustion. I don’t want to sleep through life! My kids seem to be doing quite all right for the moment! It’s really new, so I am crossing my fingers.

I play with makeup a lot. Although it will take me 3 to 4 hours what should really take 45 minutes. Distracted by tv, Looking for stuff, what was I doing?, oh yeah, that brush…

One of the scariest things is that I’m getting pins and needles down my arms. I can’t feel my fingers that much anymore, my fingers are all cracking and cramping. They become more and more useless. I have to figure it out, but I never have the strength to. Or I never remember when I’m at that moment. Grrr! I even keep a notpad to write things down, but I haven’t captured it yet.

My husband is being wonderful, as usual. He has been baking gluten-free brownies every week so I can have them with my evening medicine. My gynecologist put me back on Visanne so maybe we can stop some of the cramping. Yay! Acne and weight gain! I’ve put on 10 and taken off 2. I had been hitting the chocolate pretty hard over Christmas.

Anyway, I’m getting pretty tired. Hugs to everyone going through same or similar. When I don’t have energy for makeup, I have been making some crappy crafts by covering old containers with duck tape. The decorative stuff they have out now.  I will try and take a photo of some projects if I can. They aren’t gorgeous, but they keep my hands moving. It’s something to focus on, other than what’s hurting now. It’s good.

Check-in

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Hi there! I’m pretty sure I am still alive, but the days and nights are blurring together, and I don’t know where I am, (ha! I’m in my bed, duh!) Or what I am doing. (Either wrapping presents or sleeping. I may be doing both.)

The past 10? days have been strange. I have been incredibly ill. I am so exhausted I don’t know which way is up. I have been existing on what my husband (I presume) has been leaving for me. Brie and crackers, mostly. They are the only things that stay down.  I haven’t seen my husband much. I did force myself awake this morning to speak with him. (Plus, I creaked open one eye and he was running around in his cutest boxer briefs, yay eye candy!) I must be feeling slightly better!

I was to be seeing my cannabis doctor today, but I can’t. Short of a stretcher, I am not in any condition to be going anywhere. My prescription runs out mid-January, so I do have some time, but I need husband to be able to take me there. They have grown fond of him at work. Problematic. Now, the doctor has a remote program I may qualify for, if you’re sick enough, and if you remember last time I went I was forced to walk due to construction and sobbed through my appointment. They have also started a VIP program for $300 per year, which has something to do with remote appointments, but the info was vague, and my husband was the first to call, so… I am not thrilled about two tiered medicine. I am very thrilled we could afford $300 a year, if that is right. It goes with my husband being so beloved – and he wouldn’t have to take a full day off. He could work from home, and take just however long for the appointment. Such a relief for our family.  (Yes, I am aware this makes the doctors sound sketchy, I think they are on par, frankly. Are they money hungry? Hell, yes!)

I feel terrible I haven’t seen much of my kids, but I have been getting up every morning when my alarm goes off during the week at 6 am, and weekends at 9, but I was up around 8. I have seen my daughter during the week, and my son on the weekend, so not much has changed. They’re teens. Always stuff going on. I always want to spend more time.

In Aquatic news, one of our Elder Pleco died yesterday. We are quite upset. However, downstairsn, it seems we have our second litter of bushynose pleco! We didn’t intend to have them breed, but, here they are!

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I found this hilarious, I am tempted!

 

From my favourite advice column:

Not an Act

Prudie advises a letter writer who constantly gets questioned about her disability.

Mallory Ortberg, aka Dear Prudence, is online weekly to chat live with readers. An edited transcript of the chat is below. (Read Prudie’s Slate columns here. Send questions to Prudence at prudence@slate.com.)

Readers! Ask me your questions on the voicemail of the Dear Prudence podcast. Just leave a message at 401-371-DEAR (3327), and you may hear your question answered on a future episode of the show.

Q. Not faking it: I am currently disabled. I’ve worked my way up to being up and about for an hour to two each day. Whenever I go out, people say the oddest things to me. Today, when I parked my car, a man came up and said suspiciously, “You don’t look disabled.” I said I just had surgery and rushed away. This happens almost any time I use my handicapped tag. Friends will tell me that I don’t look sick, or that I look great, and then take it personally when I say that I can’t go out for long or go to events. One of my best friends today asked if I had just tried increasing my pain tolerance. I never know how to respond, and knowing that these interactions are coming makes me anxious about leaving my apartment. What can I say to strangers who confront me about my disability, and to friends who don’t get it?

A: This will hopefully serve as a reminder to all readers that not every disability is immediately visible, and that it’s not the job of the general public to monitor people with handicapped placards for signs that they “really” need them. You don’t owe strangers a damn thing, much less an explanation, and I’m so sorry that so many people have taken it upon themselves to demand one of you. Feel enormously free to ignore them.

Getting this sort of treatment from your friends seems so much more painful. I cannot imagine why your friend would say something as amazingly stupid as, “Have you tried just feeling less pain?” That’s worth revisiting, especially since you say this person is one of your best friends. This is not something you can simply decide to ignore, and your friend should apologize for suggesting you just “get over” something like chronic pain. I hope there are people in your life who understand that you are dealing with a new reality, and who are looking for ways to demonstrate their care and support, rather than demand when you’re going to “get better.”

 

 

I am thrilled I get to miss the in-laws Christmas again this year, as I always get treated with suspicion. The first 7? Years of my disability leave my SIL would ask if I was working yet? Although, I have thouroughly explained my illness to my parents, and my Mother has asked me 3 times if I am coming up for Christmas.

I do hope you are having a wonderful holiday season if you are celebrating!

We celebrate Christmas, and I am currently trying to wrap what I can day by day. My sister is coming to visit, she has been teaching English in China, and I haven’t seen her in a couple of years. She will be here after the holiday. I have no idea when, but hey – all will be revealed.

I’m desperately trying to rest up. Taking my vitamins. Staying warm, Husband knows he will get sick as soon as he stops.

Ok. I am exhausted. That was far longer than intended, but good to share.

Sending lots of love and light!

*Groan*

giphy2A huge snowstorm is predicted overnight. Currently, I am applying and stockpiling every pain remedy we own. Ive happily dosed myself with medication and am still in excruciating pain. My back, nay my entire spine is trying to exit the top of my head and run for freedom. My hands hurt. I can’t move. Everything hurts.

There’s been nothing much exciting this week. Ive been putting some finishing touches on Christmas, buying tons of stuff for myself because I have no self control. It’s all little things. I think I had the flu or something, slept for 18 hours a day for most of the week. I’m eeling stronger now.

This storm, wow!

Sorry, I’m Late… Too Mellow…

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I know I said I would be back yesterday, but I have been dealing with a flare-up and have been sleeping up to 18 hours a day. If I am not sleeping,  I just lie there, curled in a ball. My husband tries to wake me, but he can’t when he gets home. Consequently, I haven’t had a bath in two weeks. A proper one, anyway. I’ve been washing in the sink. And using wipes. To think that is all some people can do! Today I will bathe properly!

I’ve finally smartened up and am taking the full course of meds available to me. I don’t care how loopy I get. I’ve asked my husband to force my medicine into me, not just try to wake me.  The distinction is important.

The reason I can’t bathe is I am not comfortable without my husband being here to get me out of the tub. I have fallen a couple of times, and the kids aren’t equipped to help if I am unstable at all. I keep thinking I will do it tonight, but then… oh well. My teens smell worse.

I have spent the last two weeks really regenerating. I did a lot of good things, some stupid. First thing I did was end my Beauty Blog.  That was a tough, but obvious decision. I just can’t keep up with the deadlines I put on for myself. I can’t even scroll through Instagram right now! So, once I ended that, at least the guilt and pressure was off. You can keep up with me on Instagram, which I do update regularly @squidgeaboo. If I am ever strong enough, I would love to do the Beauty Blog again, but I think things would look different. It would depend on my health at the time, of course.

Next, I deleted Facebook Messenger. I think that was a mistake, one I will rectify once I am done this post, but it made sense when combined with my original plan. I was going to originally delete Facebook entirely, but then I remembered how useful it is as a sign-on device. I then decided to delete all my friends. Remember, I was pretty close to total mental collapse, here! Or emotional. As I started deleting, there were some I just couldn’t. (Now, I had added a ton of people after the US elections last year. I was hoping to become more engaged, but it didn’t work well. I made some wonderful friends, so it wasn’t a loss. However, there were many people I didn’t engage with and didn’t recognize.) I know there are good people who got caught up in my zeal, and some in my clumsy fingers, and even a few in my original mandate! I had intended to go back and do a second wave later, but looking at my new feed, I could see all my old friends. I could chat with people I remembered. They were there all along.

Perhaps Facebook enagement is what I need. Perhaps that is what I can handle. I do hope people can forgive me. Although I don’t know if I should draw attention to my boneheadedness and apologize or just do better from here on in.

I’m still playing with makeup when I can. The exhaustion doesn’t help, but it’s important to stay flexible and keep my fingers working with dexterity. Crochet is out, so makeup is in. I asked my husband for a couple of craft supplies and he spent hundreds of dollars on duck tape, the fancy kind, and glue, papers, mats, exacto knives, etc. I’m in heaven! Don’t worry, I promise not to sell you any crappy crafts! 😂

The other project I am working on is organizing my house. Well, everything I can reach. The other three members of my family have executive function issues, meaning they aren’t great at the higher levels of care, such as throwing out empty bottles of shampoo, etc. Being organized means everything is in a pile. I have been out of commission for ages, so it’s time to organize and dispose of everything we don’t need. It is going to take ages, as I can only do a bit at a time. The rest of the time, I stare at whatever is on TV. I sat through an Extreme Couponing Marathon. Fascinating. My brain can’t comprehend anything complicated. Just staring at the pretty pictures!

Anyway, organizing! Started with the bathroom… now for my too-big clothes! But the socks go first! Anything uncomfortable…gone! How many pair do I need? 😂 Maximum 5. If I go out 7 days in a row, I can either wear fuzzy bed socks or my worn ones twice…

P.S. I should note that my husband has done an excellent job of things over the years: Our house is not exactly a craphole, except for the fact that our kids spread out everything they own in order to see it. He hasn’t gotten rid of some of the other stuff, though, like the shampoo I didn’t like, or the razors I don’t use anymore, or weed out the facecloths that are paper thin. He does think we need new bath towels! He’s taken all my clothes that don’t fit to the basement. I want them gone. That sort of thing. Big Purge. 😈

Mid Break Update

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I am really feeling better. I have taken a giant step back, I feel. I am streamlining my life.

I have divested myself of my Beauty blog. That was difficult. I’m disappointed. I enoyed that so much. I don’t know that it was hugely popular, but I enjoyed it. The commitment was too much, however. I will still continue to play with makeup. It is excellent therapy. It keeps my hands nimble, keeps me moving and motivated. I have a reason to sit up straight for a while, although I can lie down and apply makeup!

I’v pared down my Facebook friends list. I was originally going to delete everyone, and keep my account only as an identifier to log on to websites, but as I was deleting people, there were some who… well, I just couldn’t get rid of right away. I thought I would do two phases. Then, I decided to live with the smaller list for a few days. I like it. So far, it might be the level of socializing I need. Unfortunately, in my haste, I know I let some people go, people I probably shouldn’t have. I can’t remember everyone, though. I do hope they will be back.

After the US election last year, I added tons of friends, thinking there would be opportunities to make some great friendships. I did make some friends. But I overestimated my ability to actively participate in friendship. It’s also interesting to see who had left long ago.  But I think this was a mistake, overall. As social and gung-ho as I sometimes feel, I sometimes don’t take the time to guard my emotions or protect myself from potential toxic friendships. I need to be more vigilant.

I feel like I have been doing a lot of things in the wrong way lately. Perhaps pushing things too hard when I should be letting go. I’ve been complaining and feeling that I have no friends, but I do, and I have. I couldn’t see them for the riff-raff. It’s embarrassing to admit, but I would be disingenuous if I didn’t. I think, however, those who have been in acute pain for any length of time will understand, at least, how I may have been feeling.

I’m feeling far more zen. Focusing on myself. My family. Becoming well within myself. Banishing negativity. It is hard, because my body is going through hell, but I know it’s for the best.

I’m decorating my space with pretty things. I’m organizing everything I can get my hands on.  It’s one of my favourite things.

The muscles in my back have been killing me, partly from getting rid of stress, partly from overdoing it. My head still hurts. I have almost constant migraines and facial pain, but I try to not think about it. Keeping up with the medications help.

Another issue is that I am bad at taking my medication. I am now committed to taking my full dose at proper times, and it’s helping a lot. I know I am being stupid about this, but I lost a bunch of friends on a message board when someone decided I was a drug addict for taking my medication (it was the wrong type at the time, not a good fit, I was going through a nightmare on this stuff, so I really wasn’t great at defending myself) and it’s affected me. I am working on this.

My kids are really struggling. I am trying to be more present for them. My son does not, in fact, have Autism, but a series of learning disabilities. My daughter, does have Autism. Both have anxiety disorders. Brilliant kids, struggle to leave the house.

Be well, see you on the first!

Drained.

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I’m going to take a couple of weeks off. I have nothing left. I’m completely empty of anything valuable.  I’m not coping well, and I need to reevaluate some shit.

I need to rest. I need to get over this flu. I need to get warm. I need to reinvigorate myself. I feel like I’m sitting around whining. This is not who I usually am, nor who am I happy being. I need to take some time to reflect.

Things have been really complicated here for the past couple of weeks, and I need all my resources to refocus our family. I act as main cheerleader, and my distraction lately has resulted in a lot of problems with school.

I’m not happy now. I need to find out what might actually make me happy. It may be as simple as shaking the funk that accompanies flu. It may involve serious house reorganizing.

Will keep you posted.

Before December 1 if I am able.

Feel free to email if you wish.

Untitled.

I received an email this morning telling me that the reason my old pain management doctor was on leave was because he sexually assaulted three people and the College is calling for more stories. The clinic is being shut down. They didn’t hide their glee. They couldn’ t wait to lay their story on the College!

Look, I’ve heard the rumours. I’m horrified.  I’m disgusted. I don’ t know if there are any people out there who aren’t monsters. Yes, people. Women have been just as disgusting to me as men. Which is why I’m sitting here alone.

I really don’t understand why you have to clobber me repeatedly with the facts. I said I wasn’t sure what was happening, because I heard your version, everybody has heard your version, but the facts are playing out differently.

I am having appointment after appointment booked with… the new Head of the Wasser Pain Clinic? Dr. Peng! We go way back! He’s amazing! Very different from Dr. Gordon! Will this be permanent? Nobody knows yet.

What you don’t seem to understand, is that Dr. Gordon was always cordial to me. Was that because my husband was there? I don’t know. But he was the first person to listen to me. So I can’t throw him under the bus for a game of telephone. The first person to say he assaulted me, absolutely. I don’ t think he’s not capable of it. I just don’t lose my mind over non-verified conjecture. We are talking about a fifteen year relationship, here.

Anyway, moving forward, if anyone could show anyone else some compassion for losing their long term doctor, not being able to access care, that would be great. I sat here for three months not being able to sit up for more than fifteen minutes most days because my pain was so bad, and I couldn’t arrange to see anyone as he went on leave right before my appointment. If I sat up too long, I’d start puking.

I think if Dr. Peng is truly taking over, things will look completely different at Wasser, it will be like a breath of fresh air. The man is a genius! He is very strict, though. Doesn’ t like fatties. He treated me so differently this time around when I was skinny. 🙄 my only complaint.

I’m going to go process this some more. (Cry) I really only have to muddle through until April, when my appointment with the EDS clinic happens. I’m expecting big miracles from them!