Time Flies…

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Hi there! I know I have been super neglectful, but the last couple of months have been quite the rollercoaster and I have not had the spoons to also actually get off my arse and keep you updated, so now the time has come.

Firstly, I finally got in to see a gastroenterologist  and a fellowship student. Hallelujah! They listened, asked questions and took my concerns seriously! I am on a few new medications, I can’t even begin to describe how much better I am feeling. When you go from pooping every 14 days to nearly every day, what a difference! My back pain has cleared up considerably. I have a number of tests to do in January, scopes and such, so hopefully we can learn what is going on. Rather annoyed this took so long, but was rejected by rather a lot of doctors.

My chronic migraines are leaving me so dizzy I’m having to use my wheelchair more than I would like. I was referred to another doctor as my new doctor is studying for a year, and I think it will take some time to adjust. First visit, he injected into my jaw and chewing has been a nightmare since. I see him in a couple of weeks, so I will discuss this. He seems nice, so it shouldn’t be a problem.

My vision is so bad I can barely see even with my new glasses, so I’m going to try to get that sorted. I think it’s the migraines, but who knows?

My kids are struggling with school attendance. They love school, but anxiety is high, and with autism and learning disabilities, it’s just not easy. They get pretty high marks, though, so I hope they can pull through.

I’m still having trouble sleeping. I’ve been begging for help for over a year now with no results. I was told I needed to see a psychiatrist as they are the only ones who know about sleep medications, but when I brought it up to my doctor again he told me it was a waste of a psychiatric appointment. I have no idea what else to do. I’m becoming suicidal and wondering how much longer I have to live before I can say I tried. When I spoke to another doctor about crying from exhaustion she said “oh, yes, so you’re depressed.” My jaw dropped.

So everything is fantastic, as you can imagine. I am so tired of fighting to be heard. It’s frustrating to say something to a doctor and have them completely talk down to you, then have my husband say the same thing and they suddenly switch on their understanding. For example: I spend most of my time in my bedroom, but I’m not lying down or sleeping,  I’m puttering around.  Doctor tells me I’m lazy and should do something so I will feel better.  Husband repeats what I just said, Doctor now understands that I spend the day doing crafts, playing with makeup and puttering. It makes me furious!

I’m going to take a break now and cry some more. I will try to be back to a more regular schedule. Perhaps not as mentally deranged. Although I have a sense of humor about it. 😜

Hope all your pain is fleeting!

❤🦓

 

Intrigue…

giphy3In my previous post, belatedly posted, we established I have chronic migraine and messages between my doctor and me were not being relayed through the clinic, like they were supposed to be. My doctor was displeased, but I saw her at her home hospital, and I am on the pain clinic waiting list at the EDS hospital. The issue is, not many doctors hold a license for prescribing one drug I am on, but have been trying to quit, but my doc hasn’t had enough time to make that happen. Now it’s a priority. So I have to go back to the bad clinic for a bit.

Well, I just received a call saying there was a cancellation at the bad clinic and they called me right away because they know I am in need and they want to have a discussion about my needs going forward.

Anyone else sense a clinic about to lose a lucrative client?

I am certain my migraine doctor spoke up about leaving me hanging for three months. Part of the reason I hadn’t directly emailed my doctor earlier is I had once, and received a confirmation call from the nurse on duty who refused to speak to my husband, who is by my side constantly through this, and eleven years at this clinic, he has signed all forms indicating he is my proxy. She made it sound definitely not okay to be emailing.

Or, it could be just to refill my prescriptions.

Anyway, my migraine doctor recommended a new 20180525_120251.jpgmachine alled Cefaly. I hope it makes me look like Wonder Woman. I haven’t tried it yet. They zip tied the zippers on the case together and I thought I might sever an artery if I tried to cut it open. My husband opened it with nail clippers. Genius.

I am losing large chunks of my brain, it seems. I just can’t remember things. My brain is usually razor sharp. I’m forgetting how to spell! Well, but am I forgetting, or just screwing up? I wonder.

I’m starting to relax a bit. I hope to blog a bit more. Truthfully, Things have been tough. My parents follow me everywhere on social media, and are asking so many questions; after our distant relationship, it’s really hard to adjust. I’ve tried speaking with them, but I don’t think they get it. They imagine me talking to friends or my kids or my husband. No! Most of my friends deserted me. My kids are introverted teens. They talk to me when they need their Dad to understand something, and my husband gets up at 5 am, gets home at 8:30 and I may see him from 9:30 to 11 pm if he stays up late and I’m not in a sleep phase.

But things are getting better. I have more friends now. I’m not always sleeping. Though I have my weeks. My sister was here at Christmas, but the last thing I did with a friend was last June. Ha. Last time I even went out that wasn’t a doctor appointment. That sucks.

It’s just tough having your parents witness your every human interaction. My mom means well, but she offers opinions, and I take it as criticism (because it always has been in the past, even though she doesn’t mean it that way?), partly it’s great that people are treating me as normal, but I am really delicate still. I don’t get jokes much, (maybe it’s living with three people with autism?) Maybe I am too weak, still? I feel as if we are just going to end up hurting each other or saying something the other will misunderstand, because it’s easy, and I am in pain or the medication has made me fuzzy. But I feel too weak to have the conversation, too.

Blah, it’s awful. Does anyone else feel like this or am I awful? Or both.

On a lighter note, shortly after my Botox in July, I’m getting my hair done! Decided. 😜

Much love

 

Great News!

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My appointment with the EDS Clinic has been moved to Thursday! Yes! This Thursday! I am so excited I can barely breathe! Prayer works! Or being on the cancellation list! Or being charming, which the administrator has mentioned twice as being a factor in choosing me and my husband when cancellations come up. Which is very flattering, because I have been feeling like a gaping asshole lately for being so selfish and me-centric. However, I have only had enough spoons to get me through.

I have been trying to remain more positive lately, as one person suggested I not dwell on the past so much. I think that’s good advice. I don’t think that I was so much, but in evaluating, I am certain I wasn’t looking too far into the future. What do I have, really, to look forward to, personally? Let’s say I live another 30 years. That takes me to 77. Let’s hope my pain remains at this level. Oh, Lord, that’s depressing as it is. My grandmother is turning 97 this year, so 77 might be a bit wishful. Ha ha.

Of course, seeing my kids grow, my husband grow in his career. Die from stress, that will all be fun, too. (Joke) It’s fraught, but there are tons of things they teach me every day. My son takes physical therapy, and they are talking of sending him, ironically, to the EDS Clinic at Sick Kids. He hasn’t been diagnosed, but a diagnosis wouldn’t surprise me. He’s 13 1/2. My daughter has Aspergers, and the anxiety component is so challenging. She is so tough. So is my boy, actually. I spend a ton of time worrying about them, and deciphering whether my husband is actually trying to insult me, or if he’s just being autistic. He has autism as well, we just found out when daughter was diagnosed, only because they are exactly alike. I know he’s never trying to insult me, he just says things how he feels them and it sometimes sounds funny in words.

I’m rambling, sorry. Excited. Tired.

Once we find out what they can do for us, the EDS Clinic, I mean, then we can branch out and fill in the gaps.

Good thing we kept the wheelchair from my appointments, whenever those were. 😜

Hang Head, Feel Shame.

I have been so neglectful of keeping you updated, I really should be ashamed of myself. However, I have experienced a very disruptive two weeks, and I am merely catching up now.

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Firstly, today is my 47th birthday. (Cheers, applause) I take birthdays pretty darn seriously. I always have. Partly, because it gives me an excuse for self-care, which is not something I allow myself on a regular basis, although I am getting much better. I tend to celebrate myself for a week or a month. Depending. I have never celebrated my birthday with a party as an adult. I only had a couple of parties as a kid, then we had the family parties where we celebrated everyone’s birthday that month. In my 20s, we were too poor and I was always working, then babies and now I’m eating so funny, and I can never get anyone together. The banking industry has its year-end on October 31, so most of my friends were really busy these past two weeks to a month. Including my husband. I hope he starts coming to bed before I’m on my last leg now!

Enough of that whining, Sephora started their Rouge Sale this morning, so I saved up for ages! Bought tons of goodies! Yay! Toys!

It seems my Botox kicked in on Monday sometime. So I’m feeling much better. I need to be very careful and ensure I lie down, avoid stress, eat properly, relax, rest, but as long as I take care I have a lot of improvement. I’m excited for Christmas!

It seems our son may not have autism. He was evaluated with the school psychologist, and while he presents as autistic, he is very anxious and has some serious learning disabilities we are trying to negotiate. They involve information processing and executive function. Once these are rectified, he may do just fine, and the autistic appearance will hopefully fall away. If it doesn’t, then he is autistic and we have more to work on.

Still having trouble with daughter attending school regularly. Her anxiety is just overwhelming.

So that’s what has been occupying my day to day. Both kids have needed more time from me, so I’ve been there for them. I’m tired today. Mellow. This afternoon cries for a nap.

I did have some fun with Halloween costumes.

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Beware the Rainbow Kitty!

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Who’s the cutest zebra you’ve ever seen? 😛

Hope you had a great Halloween!!!

Here’s hoping things get back to ‘normal’ lol!

💜

 

Botox Shots

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I had my needles for my migraines on Monday, and it was an experience. My appointment was scheduled for 9:30, but we weren’t seen until 11. Around 10:15 is when I put my head down in my lap, and 10:30 is when I burst into tears.  I just can’t sit up that long. So they let me into a room to lie down, but it only had a dental chair. So I sat in it and dangled my head over the edge.

The doctor came in and he remembered me, but couldn’t place me, which is understandable. He believes anything over 200 iu of Botox in the body at any time is wasted, so my 600 of body iu was a total waste. At this point, I’m coping well without it. My back hurts like a demon, my pubic bone is not bothering me as much, though. I am better at taking my medicine.

I had some relief from head pain, as they also inject you with lidocaine, but the back of my head still aches. It’s really tough to stay cheery.

I have confirmed I have a referral to both a gastroenterologist and a neurologist. So there will be investigation. I am hoping for some relief with the Botox. I need to relax. My husband called on the cell this morning and I had to yell to be heard. It made my head hurt.

It seems as if this doctor will be running the clinic for the time being. I am to book for my regular interval, 9 weeks, but they aren’t set up that far yet.

I have purchased a bunch of new clothes, as my weight has stabilized, it seems. I have day pajamas and night pajamas. The Gap has some super soft knits if you know or are some people with SPD.  I’ve only seen the women’s clothes, as that’s all I’ve looked for. I had my nice pajamas on, as I’m walking up to the door, my husband comments that my pants are saggy in the butt again. Dammit!  They are too big, meaning everything is too big. On the bottom anyway. Maybe my stomach just isn’t bloated. 🤣

At the moment, I need to ensure I lie down often. Rest. Things take hours. But I can avoid these headaches. Neckaches. Which is from being tense from the pain, i think. My face usually hurts regardless.

I’m still sleeping a lot. I’m trying to reach out more to people. This is a rough week. Husband is working on year end. The kids are restless. Anxiety is up.

So, I wait.

💜

Stunned.

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Things aren’t great here. I’m coping. But I’m just coping. That is all that is going on. My life has pared down a lot from even where it was before. I think that was necessary, for now. Let’s just be real about what’s up.

My back-of-head pain seems to be back as it was before. Now, I can only speculate I had a reprieve because of the BOTOX injections. I am nauseated and dizzy when I sit or stand for too long. I do see the neurologist in two and a half weeks.

I received my date for the EDS clinic. April 2, 2018. I could weep. I had somehow thought December. It doesn’t help that I am on the super-duper special accelerated list, either. I am on the cancellation list as well. They are booking for the regular plebian Ehlers-danlos patients in November, 2018. This is supposed to make me feel special. It does.

Currently searching high and low for a gynecologist. This won’t become a crisis for two weeks, yet.

My husband has been in touch with the pain clinic. They do not know what is going on, but are working on things. I can’t worry about that.

My daughter has had the flu now, recovered, and is perhaps catching it again since school started last week. My son’s autism is really not good.

I have been organizing and reorganizing everything I can get my hands on, because it soothes me.  I haven’t been able to talk to anyone lately. I just can’t stand any pity. I don’t particularly want any advice either. I mean, unless it’s really helpful.

What I would love is some support.

I posted on Facebook that the pain was so bad, I was really struggling. I took a nap. I receive some push notifications, and one person, I don’t even know who suggested I “seek help” and it sent me over. I haven’t been back. It hit me so hard just then. People don’t see me at all, do they? How many people think I’m depressed? Seek help. Yeah. I will get right on that.

I do, actually, feel quite peaceful. My husband needs to run interference for me for a while, because I can’t people, but it’s only another year of my life to waste.

Spotify, Netflix, these are my new best friends! Oh! I can listen to music again! So neat!

💜

Im Thinking of Hiring a Male Escort…

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…to come over and watch tv with me. You see, my family is impossible to watch television with. The husband can only watch things that require sporadic attention, like sports, or a comedian. I cajoled him into watching Stranger Things with me last weekend, and in the first freaking episode he had figured out major plot points! I didn’t let him know this, of course. He was great, I know this required extra effort on his part. We then watched Atypical, which is about an 18-year old with autism. That was painful. He is dealing with his own autism and it hit a bit close to home, I think. Anyway, it was wonderful of him to watch with me, but I can’t ask him to do this regularly. He has a stressful job, and to come home and stress over tv is too much.

My daughter watched some tv with me the other day. She likes her shows, though. Either horror movies or teen shows.

I’ve been trying to pull away from documentary and watch more comedy. I think it’s good.

Finally managed to reach my grandmother yesterday. She reminded me she’s turning 96 next week. She asked how old I was, and when I said 47 in November, she replied “Oh, you’re old, too!” 🤣 My husband is 49 next week. Yikes! We is ancient.

Chatting with grandma was lovely but tough. She has a benign tumour on her pancreas, and a polyp in her throat. She needs to have all her food blended. We compared pathetic diets, followed by a round of ‘I feel bad for you!’ ‘No, I feel bad for you!’ It’s horrible to be pitied by your grandmother! I assured her I have a wonderful full life, even if it’s not very exciting. I can’t help but shake the feeling she’s hanging on to make sure we grandkids are all settled.

My life is really lovely. I do have a nice spot carved out here. It’s a quiet life, I’m not making huge splashes at anything. But is that what I want? I have enough people in this world with grudges against me, for very silly things, for the most part. I will just sit here quietly and enjoy my life and quietly do what I can to avoid pain. Cultivate what friendships I can, and just be in the moment.

It sounds right.

💜