Poetry: Paper Doll

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I’m a paper doll
with third degree burns.
Dress me up,
make me pretty,
and please, simply ignore
all the raw, peeling flesh
falling onto the floor.

(Poetry by Maranda Russell, marandarussell.com)

 

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Fears of Becoming Home-Bound

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I’m still struggling with bad neck pain. Yesterday it felt a little bit better, so I figured I would try to get out of the house for the first time in a while (other than ER visits). Unfortunately, once I got in the car, the vibrations from the car itself and the movement from driving kicked the pain back into high gear. I did at least make it to Wendy’s so my husband and I could get some dinner, but then it was straight back home because I was in too much pain to do anything else.

Honestly, after two weeks of these headaches and severe neck pain, I’m starting to worry this might be a long-term problem, just like my right shoulder blade and the arches of my feet. I’ve been incredibly depressed the last few days, partly because of the pain itself, partly because I can’t do much of anything, and lastly because I worry if my body continues to deteriorate at the rate it seems to be going, I may eventually become completely home-bound. I believe that all these chronic pain issues are mostly related to my Ehlers Danlos Syndrome, which sucks even more because there is no cure for connective tissue disorders 😦

Migraines Caused by Neck Issues?

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I’m still struggling with migraines, but am starting to think that they might actually be cervicogenic headaches (caused by issues in the neck). The last few days, the left side of my neck has been visibly swollen and extremely tight, causing a great deal of pain. I can’t help but notice that the worse the neck pain is, the worse the headaches, nausea, dizziness, and fatigue become as well.

One person on Facebook who also suffers from Ehlers Danlos even suggested that perhaps the migraines may be due to a chiari malformation or craniocervical instability, which are both common issues associated with Ehlers Danlos Syndrome. I have wondered about the neck instability possibility, as I often feel like my head is excessively heavy, not supported well by my neck, and sometimes bobbles around almost like a bobblehead. Whenever I sit for long, I have to have a neck rest because my pain worsens quickly if I have to hold my head up without support.

Unfortunately, it looks like if instability is the issue, the answer might be this huge, horribly-uncomfortable-looking neck brace that looks like it would be sensory hell for me. Of course, I do know from a prior MRI that I also have degenerative disc disease throughout my cervical and thoracic spine, and at least a couple herniated cervical discs. Whatever the issue, I wish it would clear up soon! This is miserable and I feel like I am living on NSAIDS, muscle relaxers, and Lidocaine right now.

Rough Week, But Some Good News

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This has undoubtedly been a rough week for me so far, but some good things have happened too. Here is a short run-down of the last few days:

Sunday and Monday, one of our pipes froze because of the freakishly cold weather so we had no water until that section thawed out. Luckily, it didn’t cause the pipes to burst or anything like that. My husband thinks he solved the issue by replacing the insulation around the pipe, but I guess we’ll find out the next time we all freeze.

Yesterday I had my appointment with the rheumatologist to get my Ehlers Danlos testing done. I’m officially a zebra! Right now my diagnosis is Hypermobile Ehlers Danlos, although I do plan to try to pursue genetic testing to make sure none of the other EDS genes are playing a part. The doctor also highly suspected I have POTS (postural orthostatic tachycardia syndrome), which would help explain my dizzy spells, vertigo, feeling faint, and maybe even a few episodes of passing out when I was younger. It sucks that there is no cure or really even further treatment other than what I’m already doing, but it is wonderful to have some answers that finally make sense!

Tuesday I made the mistake of posting in a Facebook chronic illness group about my surprise that a zoo we want to visit charges $25 for the use of a wheelchair for a couple hours. Soon I was accused of being entitled, expecting everyone else to pay for my disability, and even being too poor to go to the zoo if I couldn’t afford the extra charge. The attacks got to the point that it actually made me cry because it hurt my feelings so much. I wasn’t even saying that the zoo had no right to charge for use of their equipment, I was just questioning whether the price was a bit high for the time it would be used. Of course, then I heard that some zoos and theme parks charge way more, some even over $100 a day! I can’t help but feel personally that is taking advantage of the disabled. Maybe I’m wrong, but I still feel that way.

Last night all this stress took its toll on me. I had the worse migraine I have had in years. Luckily, I still had some migraine pills from the last time I filled the prescription which was several years ago. They were technically expired, but still did their job. Today I have that slight headachy, hung over feeling I always get after a severe migraine.

 

Christmas and Family Forgiveness

Yesterday my husband and I traveled over to Indiana to meet my mom and her husband for Christmas dinner. We all decided to meet at a truckstop that is about halfway between us, so that neither of us would have to cook, clean up, or drive too far:

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I genuinely had a good time and am glad I’ve been able to spend more time with them recently. Those of you who have followed my blog for a while, may remember that there has been a lot of water under the bridge between my mother and myself over things that happened when I was growing up. She made some huge mistakes, and as is often the case, my sister and I had to pay for many of those choices just as much as she did…maybe more in some cases.

She genuinely seems to be regretful and is trying to make things better between us, so although I am always going to be cautious and protective of myself, it feels good to be able to embrace forgiveness for my own peace of mind and well-being. Forgiveness doesn’t mean that what we went through was ok, or that the damage wasn’t done, but it does mean that it doesn’t have control of my life, my mind, or my heart anymore. I can move on.

I am somewhat a believer in the saying “When we know better, we do better”. Some of us take a long, long time to “know better”, but healing and wisdom are ours once we finally do face the truth.

 

Water Heater Update

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Ugh. Turns out we have to replace the entire water heater. Over $1,800 (which we can’t afford)! This seriously sucks. To make matters worse, the guy couldn’t put the new one in until today, so we had to go all day and night without any water at all (they had to shut it off entirely due to the enormous leak). The guy said he would be here around 11am to put in the new water heater and it is now 12:30 and no sign of him yet, although he says he’ll be here soon.

Due to all this I am grumpy and feeling yucky and just want to whine lol. I can’t even flush the toilet!!! I know this may seem crazy to non-autistic people, but the huge change in my daily routine has driven me freaking crazy and brought on a nasty IBS flare. God, I hope this is over soon.

This seems like a good time to remind everyone that I do have a PayPal donation button set up on my blog if anyone ever wants to send a few bucks to help out or support my blog. You can donate any amount and don’t even have to have a PayPal account of your own. You can find the button on the right side panel of my blog home page, or access it through the Support My Blog page. If you are able to help out, that is great, but if you aren’t, your kind thoughts and well wishes mean the world to me.

Alien Abduction Experience?

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You all seemed to enjoy my post the other day about past life dreams, so I thought I would share another weird experience I had years ago. This is the closest thing to an alien abduction experience I have ever had. This is only one of two experiences I have had where I honestly wonder if I was awake or asleep (I’ll tell you about the other otherworldy experience another time). It certainly felt like I was awake for the following experience, but it was so odd I can’t help but wonder.

Here is what I remember of that night:

Being woken up by a bright light and sitting up in bed. I have memories of looking at the window blinds in our room to try to figure out where the light was coming from. The next thing I remember, a few small alien beings entered the room and stood around the foot of my bed. I don’t remember them walking in or anything like that, it seemed like they were just suddenly there. The beings resembled the small grey aliens that have become popularized by pop culture/paranormal communities, maybe around 4 foot tall or so. I remember how smooth and shiny their skin seemed. They seemed to be silhouetted with bit of light too, but nothing like the bright light that woke me.

Naturally, I was terrified by these events and I remember trying desperately to wake my husband up, who was sleeping peacefully next to me. No matter what I did, I couldn’t get him to wake up, which panicked me even more. Suddenly, I found myself laying down again, almost against my will it seemed. I felt myself floating upwards in this horizontal position and then I don’t really remember much else until I was returned. I do not remember going through the ceiling, or being aboard a spaceship, or tests, or anything like that, but I do feel like a lot happened during this blank time in my memory. I do remember kind of floating back down into bed later, the same way I had started to float up. I remember being really sleepy and kind of out of it, almost like I had been drugged or sedated. Due to this, I fell asleep quickly.

If this was a dream and I was asleep the entire time, I find it odd that I don’t remember any of the middle part, even though I remember the beginning and end so vividly and emotionally. Normally, I remember a dream fairly in its entirety, and the more I think about the dream, the more details I remember, but no matter how much I have relived this experience, I really do not remember what happened after floating upwards until I came back down.

I have no idea what really happened that night, but I’ll never forget it. We do live near Wright Patterson Air Force Base, which I later found out is rumored to be highly connected to the Roswell incident, Area 51, and other secret space programs, but who knows? I have heard that UFO activity is common in the area around the base, but that could be due to various military-related programs.

I’m a High-Strung Mess

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I am currently a high-strung mess. As my SSDI hearing looms nearer and nearer, I find myself obsessing way too much over it and almost panicking about the fact that I feel powerless over what will happen in the end. I am trying to do absolutely everything I can think of to prepare for it and make sure we have good medical documentation especially, but that in itself is stressing me out because it means having to be assertive and ask for things from my physicians which I despise having to do. I HATE having to ask ANYONE for ANYTHING. It is just the way I am, but sometimes you have to do the things you hate…

I do not do well when I feel like I am not in control of a situation. My anxiety can’t handle the uncertainty and the endless waiting. I would almost rather deal with the worst case scenario immediately rather than be in limbo for months waiting for someone else to decide my fate. On top of that, I feel like I am annoying those around me (lawyer office employees, doctors, my poor husband) because of my intense anxiety state. I talked to a paralegal today and she told me to take a deep breath and relax lol. If only I could! I can do the deep breath, but the relaxing part just ain’t kicking in.

The heightened stress is taking a physical toll too, as it always does. My upper back/shoulder/neck area is flaring again to the point that I am regularly rolling on Lidocaine and had to take some Tramadol. The pain is so bad I can’t do any household tasks, which makes me feel bad too. Even typing this is painful and requires frequent breaks.

Now I feel like my whining is probably annoying all of you too lol. Sorry if that is the case, but I just needed to vent!