Friday, May 24, 2013

Urgent thoughts and prayers needed!

A very close friend of mine has a cousin in law who was critically injured in a freak accident a couple of days ago, her cousin in law was just at home in his living room when his neighbor was cleaning a handgun in the next door apartment and the gun went off accidentally and the bullet went through a wall before hitting James and it went right through him, severely injuring the liver and surrounding tissue, tomorrow morning James is going to have a very dangerous but life saving surgery to repair as much as possible of the damage from the bullet and stop the remaining bleeding. James is in a very critical condition, and literally fighting for his life and he and the family need all the prayers and thoughts they can possible get! So please add James to your thoughts and prayers, especially tomorrow morning at 10am central time when the surgery is happening.
James is a newlywed and father of a 3 month old baby girl. His wife and daughter needs him, and so does the rest of the family!
To read more about this accident, you can read here: http://timesdaily.com/stories/Man-is-critical-after-shooting,206807

By personal request from the family, do keep any political comments out of this. James needs prayers, thoughts and a team of very good surgeons to get through this, not comments about the NRA and whatnot!

Please pray or send thoughts for a successful surgery and speedy recovery for James!

Thank you!

Thursday, May 23, 2013

I wouldn't be able to do this without...

I really wouldn't be able to cope with everything at the moment if I didn't have all my Chronically Awesome friends and the Chronically Awesome Foundation!

There are so many things going on in my life at the moment, which you can read about in my previous post. And just dealing with one or more of those things I'm dealing with now, could floor anyone.

Thanks to Chronically Awesome, I'm able to deal with everything life is throwing at me at the moment, the most difficult of course, is my grandmother's condition.
A few hours ago, I attended a hangout like I always do on Wednesdays, and despite all the things going on, I was able to smile, laugh, feel happiness and feel normal. Everyone I know in the group are people I care about very much and we always have each other's back, and I consider them all, very close friends. Some of them are people I talk with a fair bit outside of the hangouts as well and I often think: I wish we were all geographically closer!

Taking part in Chronically Awesome really changed my life a few months back and my only regret is that I didn't join in much earlier! Had I not had this awesome group around me now, I wouldn't have been doing as well as I am in general, especially not now with my grandmother's condition to deal with mentally as well. Being Chronically Awesome can be tough enough at times anyways, there may be flares, frustrations and general struggles, without having loved ones fighting for their life in hospital on top of it all.

I'm so grateful I have such awesome people around me, Chronically Awesome, you rock my world!

Tuesday, May 21, 2013

I'm literally about to hit the wall, headfirst at high speed...

It's getting closer and closer... I don't know for how much longer I can deal with it all...

I'm about to send in the documents filing for disability and I'm scared shitless that it will be denied and I'll have to appeal and maybe not just once, but several times.

Denmark fucked up real bad while I was still working and commuting, and they're trying to charge me for their mistakes and fucked up website, so I'll have to make an international call when I wake up- if I even manage to sleep.

I also need to make a phone call to my gynecologist as soon as I possibly can, hopefully this morning, as we both agreed last week, the Mirena is NOT working at all for me, so we added the mini pills I was on before- Cerazette, last week as well and well, I stopped bleeding last week after a period lasting for about 2 weeks, and yesterday I began bleeding again and that's with BOTH Mirena AND Cerazette out of which both on their own tend to make women period free, I didn't even get one full week without period on them both at the same time. If my gynecologist's superior doesn't approve an ablation for me, hell will break loose and I will report them all to everywhere I can report them to for malpractice! I didn't even want the damn Mirena to begin with!

And, I need to get my head out of ass to apply for handicap parking badge, it can't be postponed any longer now! I drive more and more myself now and if I don't use the wheelchair when I go from the car to where I'm going, I need to park as close to the entrance as possible, and if I do use my wheelchair which I do most of the time, I need more space around the car and no car parked behind me to get the wheelchair in and out of the car, no matter if I put it in the trunk or inside the cabin, I need more space! A nurse who's treating my grandmother at the hospital was really surprised I don't have a badge already...

My grandmother is in a rather critical condition now due to complications after her stroke. She was doing so well with her recovery until a pneumonia hit! Now she's battling a pneumonia and is having issues breathing and yesterday (Monday) they had to give her an oxygen mask instead of the things they stick up the nose because her breathing is as bad as it is. To be really honest, we don't think that she will still be with us by next weekend unless a medical miracle happens. She's a true fighter but the body of an 85 year old lady can only handle oh so much. The one positive thing physically is that she was in a very good condition for an 85 year old when she got the stroke. We're hoping she will pull through and recover, but it doesn't look like it's very likely to happen. So on top of all the stressful paper work and phone calls I have to make, I also have to try to prepare emotionally for the news that it's time to wake for my grandmother, or the news that she has passed on, and prepare for a life where she's no longer with me. She's my last grandparent alive today and she's the only grandparent out of the 6 I've had who's really been a grandparent for me and been able to have me staying overnight and such. I've never met my maternal grandfather as he left my grandmother when she was pregnant with mum, my adoptive grandfather and my paternal grandfather both passed away in 1968 just months apart, my paternal grandmother got brain injuries that put her a semi vegetative state when I was a couple of months old and all I remember is a woman with blue lip in a wheelchair, she passed in 1991. My adoptive grandmother was always very anxious and nervous and suffered from some kind of dementia and I only ever visited her in nursing homes as she moved to one about a year before I was born. She did visit us though.
It's only my biological maternal grandmother who's really been able to be a grandmother/grandparent to me, and she love every moment spent with me and my parents as she had to give mum up for adoption when mum was less than a year old, and then she waited for 43 years for mum to find her. Mum has always known she was adopted, I've always known I had another grandmother and my grandmother knew she was a grandmother since I was about 5 years old. In April 1997, mum finally got the courage to search for her roots and found my grandmother and we have had 16 amazing years together!
Now my grandmother is in hospital, fighting for her life, two weeks ago she was totally fine and very independent and energetic for an 85 year old. It's so hard to come to terms with the fact I may loose her very very soon, when she was doing great so recently and not even using a cane or walker.
I've been driving about 400 miles since her stroke, just back and forth to the hospital to visit her, be with her and give her strength to recover. I wish I could be with her every day, but the gas just costs too much and my body just can't handle all the driving.

I'm in so much pain now from all the driving, I drive stick shift without cruise control so it's really rough on a bendy body that's already plagued by chronic pain!
This past week, my doctor and I have had to increase my slow acting medicine, I had it coming anyways, but all the driving made me unable to put it off any longer, I had already needed the increase for a long time but tried to tough it out for as long as I could before giving in. And my doctor mentioned patches as I've had them before, in Denmark and we're going to discuss it further in the end of May. My doctor might not know much about EDS, but at least he understands my pain is severe, difficult to treat and very much real, so I get the right medication I need to deal with it. If I get to choose between staying on my current new dose of tablets, or going onto the patches when my doctor and I discuss it, I think I'll choose to go onto patches again as it gives more freedom and much better pain management. My tablets needs to be taken about every 12 hours, the patches are changed every 3 days which means less living by the clock and less reminders of depending on heavy medicines to even function. Also, on the patches, you get a more even dose throughout the day than any tablet can give and there's less that can affect the patches while tablets can be affected by how your stomach is doing, how your intestines is doing and so on. I don't always get good enough effect by oral medicines, that's apparently not uncommon in EDS... Take right now for example. I have long acting medicine and rapid acting medicine working in me right now, and my left knee is at a 7 on the pain scale anyways, as if I haven't taken anything. Other days the same dose, or even just the long acting is enough to make me have way less pain than I am in now.

Having all the stress and worrying certainly doesn't help painwise as stress and worrying causes my muscles to be more tense and that causes more pain! The most worrying is my grandmother's condition and the fear of bad news over the phone, I literally jump high every time my phone rings since she was taken to hospital. I care so much about my grandmother and wish she could have been an active part of my life since I was born, but I'm very grateful for the 16 years we've had this far.


Friday, May 17, 2013

Rough times...

There's been a lot going on lately, some of which has been very emotionally draining to deal with, and some which has been physically draining as well.

Last week was, least to say, very rough. Tuesday meant attending the funeral of my Great Aunt (Great Uncle's wife) and as you all know, it can be very emotional to attend one, and this one was no exception. It was a stunning day though, and a beautiful memorial service, and nice chitchat over coffee afterwards.

On Wednesday my parents went out in their camper for an extended weekend as last Thursday was a public holiday. They went down to the south part of Sweden and were only about an hour's drive away from their planned night camp on Thursday when my uncle calls mum. My grandmother had not picked up her phone, and as she's now using a cellphone instead of land line and he had tried calling her several times, he started to worry and went to her home to check on her as they both live in the same city. He found her in bed, still in nightdress (this was in late afternoon) and she had suffered a stroke which had made her right side paralyzed and she had lost her ability to speak. Said and done, he called for an ambulance and the ambulance took her to the hospital where treatment began. My parents were over 250 miles away from home at the time of the call, and turned home instantly and came home at about 01:15 night to Friday, dad had probably been driving at least about 350-400 miles that day once they finally came home!
On Friday mum and I went to the hospital in Gothenburg to visit my grandmother, I wasn't in great shape myself, but I was at least well enough to drive with a lot of will power. Dad was too tired which is understandable after such a long drive the day before.
Anyways, mum and I came to the hospital and my grandmother was literally shining like the sun when she heard and saw us in the room! She was squeezing our hands, smiling as much as the paralysis allows and we even saw and felt her right side move. She was wriggling her toes and moving her right foot as if driving a car, we also heard some attempts of speech!

It's been a week since her stroke now and mum and I went to see her today again, she had movement in her right foot like on Friday, she was much more alert and awake today so when she was in her wheelchair we even went out on the balcony for some fresh air, and she managed some slurred words to the nurse while the nurse put the hoist on her to take her out of bed. Things are really progressing the right way as it looks now!
I'd be at the hospital with her every day if it was just closer to home. But with about 50 miles each way, it's just too far for me to drive more than once or twice in a week, and it's also very expensive because of the high gas price and Gothenburg having an inner city tax where a camera take a picture of your license plate and send a bill home just because you're driving on that road at certain times.

To put in perspective how it is for me to drive to and from Gothenburg: I drove both ways on Friday, spent most of the weekend and week until today in bed recovering, and on Tuesday and Wednesday of this week, I was considering going to the ER due to severe pain flares in my SI joints, I was literally breathing like someone who's about to give birth, and that was from pain.
Today when I got back home, I lay down on the sofa, and don't remember much at all from the next 3 hours and it was an achievement to get up from the sofa, undress and brush my teeth and get to bed. And the SI pain is a nasty piece of work again.

I know driving may cause me to flare and cause a close to paralyzing fatigue afterwards, but at the moment it's really worth the extra suffering because I just want to be with my grandmother! Even with her making great progress with her recovery now, her going from being an independent 85 year old not even using a cane, to being in hospital and needing a hoist, in just a matter of minutes, it's scary, very scary.
We don't know how much she will recover or how fast, and then there's always the worry about pneumonia when she's in bed so much now and not able to cough well, and the increased risk of more strokes as having one tends to increase the risk of having another.
I just hope she will continue to recover! I want her to be able to communicate in the way she wants to and live as independently as possible again. We know she won't be able to live in her apartment again, so she will need to be in a nursing home due to the stairs to and from the elevator in her apartment building, and we know she will most likely be wheelchair bound from now on. But if she can just regain her ability to speak and do small things like eating, getting dressed and such, it would mean so much!

As for cellphone, mum and I had been nagging on her for years to get one for her own safety and for convenience when we were going to meet up somewhere or she was coming her or going back home so she could contact in case of delays. Little over a month ago she finally switched from land line to cellphone and last week it saved her life! Had she just had land line still, my uncle would have assumed she was just not at home, and it would have taken several more hours before she was found, and as we all know, time is essential when dealing with strokes! It's bad enough we don't know how long it took before she got medical attention, but on a positive note, she got medical attention faster than it could have been!

Sunday, May 5, 2013

Rough night...

Haven't posted anything for a while again. Haven't been feeling all too great lately, a lot of pain and added pain due to the Mirena and it not doing what it's meant to. Yes, you guessed it right, I'm bleeding again!

I've had enough, more than enough! The Mirena is going out, and it's going to take my damn uterus with it! Heads will roll when I see the gynecologist again on the 14th! I was promised I'd feel better, have less pain, less or no periods. Well, I've been bleeding more than I haven't been bleeding, I've had cramps worse than before I went on any hormonal birth control pills, and the cramps has been with or without bleeding! I'm also having nearly as much skin issues as I did in my teens. The Mirena has been everything the gynecologists said it wouldn't be, and lived up to every reason I didn't want one fitted! I'd not recommend Mirena to my worst enemy if I had one! Having one is pure hell!

As if the Mirena isn't causing enough hell. I am as I'm typing this also fighting off a spinal headache. Feeling a pressure in my neck and lower back and having a cluster headache that literally make me see stars. I should maybe hit the ER for it but it's less than tempting at 2:45am and I don't want to be in a hustling and bustling environment with strong lights at the moment, so I'll just stay in bed to wait it out. Can't even sit up without the pain soaring and dizziness hitting real bad. Shall be interesting to see if and when I'll manage to get any sleep.
I'd put my neck collar on if it wasn't out of reach in the other end of my bedroom. Might attempt to go get it soon though, feel I need it now. Need to attempt getting up to turn off the lights in my apartment as well, really do need remote control for the lights on night like this!

Think I'll take some more painkillers and attempt to get out of bed for the lights now... And then get a movie running on my computer...