The latest news.

It's been quite a while since I last posted here so thought it was about time to update again.

First of all, Happy Thanksgiving to everyone celebrating today!


So, for some updates. Well I am now on a new laptop as of two weeks as my old laptop started to give up and I wanted to at least be able to run it, so I decided to retire it before it kicked the bucket entirely! I'm now on a very nice HP laptop that runs oh so smooth and almost completely silent, I can finally hear what I'm thinking even while I'm on the computer! Windows 8 is pretty neat as well! Took a bit getting used to as it's very different from Windows 7, but once you no longer get stuck in some window, I really quite like it! I'm also getting used to the keyboard on it as that too is completely different from my old laptop. My old laptop doesn't have spaces in between each key, the new laptop does so it took a while to find each letter without looking. Now I'm typing with almost the same speed as on my old laptop though.
Am yet to transfer a lot of stuff from old laptop to new laptop, things like music and pictures that I want to have easy access to. But shall be doing that soon.

Health wise things are going up and down at the moment. I'm exactly 9 weeks post op today and I'm now pretty healed on the outside, at least the scar hasn't split open for about 2.5 weeks now so that's a progress! The scar doesn't look nearly as neat as it should by now though, but that was expected and I honestly don't care as long as it's healing and not causing issues. A hip to hip scar is not really something anyone will see anyways, and if people see it, it's a battle wound and I wear it with pride! I won!
I'm still battling severe fatigue so am resting a lot still and avoid all kinds of stress as much as possible, fatigue is likely a combination of my usual fatigue and post op fatigue still lingering. I'm just letting things take its time.

I had a full spine MRI on Halloween and requested to have the images sent to me afterwards and I'm glad I did as I knew a local radiologist wouldn't have enough experience when it comes to the complexity of Ehlers Danlos. I also found out I have a spinal condition that I haven't been told of before, yet it was found already in 2005 on a CT scan. According to the radiologist I have a mild version of Scheuermann's disease along with a straightened lordosis of my neck. I also have several bulging discs and a slightly abnormal T11, the T11 abnormality I have is typical for Scheuermann's according to the notes that came with my images.
Something that wasn't mentioned at all- and I knew a small, local hospital wouldn't even look for it, is Arnold Chiari malformation. Friends with the diagnose and experience in seeing it on images got to see an image of my skull base and neck and said it looked like a mild Chiari malformation, and keep in mind that this MRI was horizontal, Chiari is best seen on a vertical MRI. So my next step now is to find a more experienced doctor and have him or her look at the images and do a proper physical checkup of my neck- just to be on the safe side as I do have symptoms from my skull base and upper part of my neck that can be Chiari and/or CCI (Cranio Cervical Instability). Chiari can be pretty serious so I just want to know if I do indeed have it or not. If I have it there may be things I should keep in mind or do to avoid it getting worse and/or be less symptomatic, I'd like to avoid having to have decompression surgery and/or neck fusion if possible.
With both Ehlers Danlos Syndrome, Scheuermann's, bulging discs and possible Chiari malformation and possible CCI, it's really no wonder I have constant pain in my back and neck...

As of a couple of weeks ago, I'm the hostess of a forum that's part of one of the largest online forums in Sweden, so I'm keeping myself busy with keeping the forum active and preparing articles to write within the subject of the forum, I have quite a few ideas am just trying to decide in which order I should write them. I have a lot of thoughts and ideas for the forum and my wish is that it will become a source of information and inspiration both for members and outsiders once a few articles is up. There's also some plans of possibly widening the subject of this forum by adding more fields to it which I'm totally open for.
It was a very close friend who talked me into this as she thought I'd do great hosting that forum, she said I have a way with words and an ability to inspire people.


I've also kinda been doing nightshifts as a volunteer neighborhood watch, though unlike George Zimmerman I'm only armed with my cellphone, super hearing and gut feeling!
A few weeks ago as I was getting ready for sleep, I heard a lot of noise downstairs in the basement, now sounds in the basement at night has been heard before, but not so much or for so long, so I called 112 which is our version of 911 and a while later the police came, I went out to open the basement door for them and sure enough, it was a sharp situation! The police ran inside the basement, I heard a lot of noise for a good while after I got back inside and later learned that the police had caught a burglar and his companion with their hands in the cookie jar!
I'm very glad I did not go downstairs myself to check the situation, but called the police instead. I would not have been able to defend myself very well due to my condition and no one would have known I had gone downstairs. The main burglar was drunk as a skunk and so high on drugs he was ready to fly- he was charged for both burglary and the narcotics!

On a completely different note, we got our first snow little over a week ago. It didn't last, but it snowed and the ground stayed white for some hours. Since then the weather has been very varied, warm one day and freezing the next and then warm again, and freezing... Guess the Santa parade on Sunday won't be snow covered this year!
It's the first in Advent on Sunday, so have changed my curtains this week into Christmas themed curtains, and I've put Advent lights in my windows and going to put up some more decorations within the next few days and make gingerbread cookies and saffron buns. I prepared the gingerbread cookie dough on Sunday already, the dough needs to rest at least overnight before making cookies anyways. Going to start making gingerbread cookies either tomorrow or on Saturday.

Well, this is all I have to update you with for now, will try to post soon again! 

21 days post op

It's been 21 days, or 3 weeks since I had my surgery.
In general I'm doing well with recovery. Hardly any post op pain left now and for the most part my incision has healed. I just have some issues with the edges of the incision splitting up a bit on both sides out of which one was bleeding a couple of days ago. I knew my recovery was too good to be true! So, I have steri strips over the problem areas, keep an eye on things a couple of times per day and keep it clean though not overly clean as that can cause infection.
Other than the issues with healing right now. I'm also battling extreme fatigue and tire even more easily than I normally do, so I rest a lot and try to get as much sleep as I possibly can.

Have been having a rough time for a few days which is unrelated to the surgery. Had a bad POTS flare on Saturday that very nearly had me pass out and I had to text mum to come and help me, I was too weak to even make a call by the time I got back to bed where my phone was... My heart rate had jumped up with over 60bpm as I stood up and I was feeling slightly dizzy already before standing so I monitored it at the time. I underestimated how I was feeling and walked to the bathroom despite the massive heart rate increase, resulting in almost passing out in the bathroom. I'm still battling the aftermath of this, which adds to the post op fatigue and my usual fatigue.

I am not into chatting a whole lot at the moment so please don't be offended if I don't text!

Keep in mind it's only been 21 days since I had a major surgery, and I can't put my whole life on hold while recovering, which means I have errands to run and such, and even a small errand to the supermarket can have me need to nap for hours afterwards.

If it wasn't for the POTS flare aftermath and post op fatigue, I'd feel great! Pain wise I'm doing really well, much less pain now than before the surgery. I'm far from pain free, and I still have all the usual pain in my joints. But there's ONE area less that hurts as that one thing is no more, and to me that is a big win!

Just thought I'd give everyone an update. And now I shall sleep in a few minutes. Feeling exhausted despite a long nap in the evening...

Post-op updates!

So, I had my surgery on Thursday. Arrived at the hospital at around 8:30am and me and my parents just sat in the waiting area watching TV until I was called into the pre-op area. I was called in at about 9:30am and in the pre-op area I was given two different antibiotics to prevent infection and I was also given an anti sickness tablet to be on the safe side (I've never felt sick from general anesthetic but they give the medicine to everyone) and OxyContin to have a bit less pain upon waking up.
They also took a baseline blood test on me in case of needing a blood transfusion and they put in an IV. Had a bit of a wait before being rolled to the next room and in the next room I got to talk with my anesthesiologist for the day and waited some more. I finished a search word I had started with in the pre-op area and just as I found the last word, staff came to roll me in to surgery.
Got rolled into another room just outside the actual surgery room and in that room I had electrodes placed on my chest along with a blood pressure cuff, I got oxygen in my nose and the anesthesiologist and anesthesiology nurse prepared me for surgery by inserting the epidural catheter that would be the main part of my pain management, and another, larger IV was inserted as well to have a backup access in case the first IV failed.
I was somewhat sedated, but remember everything from the insertion of the epidural catheter, that insertion was actually the thing I was the most worried about when it comes to my surgery, as I had to be awake when that part was done so they knew it had hit the right spot. Fortunately they hit the right spot at the first attempt and I was numbed but never lost control over my legs, I could move them freely.
If I need another surgery, I'll definitely go with the epidural catheter and pump again because it helped really well and wasn't as bad as I thought it would be with the insertion- as long as being well medicated when it's done.
Chatted and joked around with the anesthesiologist and nurse while we waited for the surgery room to be cleaned and eventually I was rolled in around noon.
Got some more hot blankets on me as I was freezing so much my whole body was shaking uncontrollably, see, each room since the waiting area had just gotten colder and colder! And I was fasting, it had been really cold outside that morning and the IV fluids I was getting weren't warm either!
Got to talk a bit with the surgery staff before it was time to sleep. The oxygen was removed from my nose and got a mask instead as the sleep medicine was administered and then I was asleep seconds later.

I woke up again as they were about to move me from the operating table back to my bed, and as I was rolled out to the recovery room I accidentally spoke with the staff in fluent English before realizing that shit, I'm in Sweden! So I just explained to them that I mostly communicate in English in my daily life so it feels more natural to me than my native Swedish.
I arrived in the recovery room and the pain was really intense! We had not yet gotten the settings right on my pump, and having just woken up from a major abdominal surgery- IT HURTS! IV morphine was given several times over the next few hours and it actually took close to five hours before my pain was well managed enough to be moved upstairs to the ward, I also got to try to sit up and stand up in recovery just before I was rolled to the ward. I got upstairs shortly after 7pm, got a private room with a stunning view over the city and amazing nurses!
I got some more painkillers and took the Clexane injection of the day (yes, I take the injections myself, I have no problems with needles) and then as soon as I was on my own in the room the first thing I did was to call my parents to let them know everything had gone well and I was okay and then I wrote a Facebook update letting friends know I was okay and everything had gone well. And I replied to text messages I had got earlier in the day while not having my phone.
Eventually it was time to sleep for the night so I got some more painkillers and a bolus dose on the pump to help me through the night and I actually managed to sleep for about four hours or so before the morning nurses came to check my temperature, slept some more and then it was morning medicines and breakfast.
I got quite nauseous after breakfast, had not eaten in about 36 hours so maybe no wonder along with having had abdominal surgery the day before. I never got sick anyways and I got some anti nausea medicine IV minutes later to prevent more nausea.
Had another bolus on the pump to get me through the morning and spent most of the morning resting, drifting in and out of sleep or watch TV. I had a low fever that day which is fully normal for the day after surgery, my Hb and blood pressure was checked as well and I had a Hb in 120's which is great, and my blood pressure was 110/60 which is just slightly lower than my usual 110/70 so was doing great there as well. Epidurals may cause blood pressure to drop! My surgeon came and said everything had gone well, my surgery had been a text book case, it had taken 67 minutes, and he checked the dressing over the incision to see if everything was okay there. It was, I had not been bleeding so they did a really good job with the stitches!
Had lunch and kept watching TV and resting and felt really good considering I had been having a major surgery just the day before. Yes, I was in pain, but it was well managed and a different pain than the abdominal pain I had before the surgery.
Day went by pretty smoothly and even managed to get up and walk a few meters with the help of two nurses and all was great, until the late evening... I started having severe abdominal pains that were on the edge of uncontrollable as they'd been in recovery. After a little while I asked the nurse if it could be something going on with the Foley catheter I had so she tried to flush it- it was completely blocked! Ultrasound showed I had about half a liter of urine in my bladder, and that's not a big amount for me normally, but when it pushes on an incision it hurts like hell! Said and done, emergency catheter change was done minutes later, got another type of catheter and one size bigger than before. And for those worrying about having a Foley catheter- it doesn't hurt at all having one and it's not even uncomfortable having one changed! It's really nothing to be afraid of...
Anyways. As soon as the new one was in and urine could flow freely again, instant relief! So fortunately that pain was an easy fix! What boggles us all is how a catheter can completely clog up in less than 36 hours, those catheters are made for being used for several weeks or even months at a time. But anyways, next time I need one I'll just tell them to use the larger size at once to hopefully prevent this from happening again.
The catheter that got blocked was a size 12 and the other one a size 14. I know that from the color on the plastic ring on them- work injury from my warehouse job in a medical supply warehouse ;)

Day two post-op came and it was time to wean off the epidural pump and have the Foley catheter out. Took a few hours before I managed to pee on my own (I don't usually go very often) but once I did go it went well and I also started getting out of bed without having nurses in the room as I was no longer having the epidural pump or a lot of other hoses to deal with. I only had the epidural catheter still as it was taken out in the early evening but it wasn't in the way as it was taped all the way and no dangly bits.
Day two was pretty rough pain wise as my body wasn't happy with the mattress in the bed, I had the Princess on the pea syndrome in it and couldn't find any relief, it was mainly my lower back and left hip being really bad pain wise. My epidural catheter was taken out in the early evening and then I was to just lay down for a while, it wasn't the easiest with such a bad back and hip but I managed it and fortunately I did not get a spinal fluid leak!
Had a hard time sleeping that night, pain in hip was really bad and I had also been having what seems to be an allergic reaction against something late in the evening. I found a blister on my skin and felt it was a bit heavy to breathe so it wasn't until very late I even dared to try to sleep after some antihistamine and feeling better. I was also freezing all night due to fog outside.

Day three post-op came and this was my last day of staying in the hospital! I rested a lot through the morning as I had slept so badly that night, I got to take a shower and packed my belongings and also walked some in the corridor before my parents came to pick me up in the mid afternoon.

It was so nice to come home to my own bed again! And to my cat! While my hospital stay was a good experience as much as hospital stays can be, there's no place like home!

Day four post-op and first whole day at home has gone really well. I still struggle a bit with getting up as I have nothing to hold onto when trying to get out of bed and I can't and am not allowed to use my stomach muscles. Pain wise I'm doing okay, I have managed on Paracetamol in daytime and take Oxycodone or Paracetamol/Hydrocodone for the night. I have however now been hit by the famous post-op fatigue so the day has been spent mostly resting and sleeping.

I'm now heading into day five post-op, it's 2:45am night to day five as I'm typing this and tonight (day five) I will take the last Clexane injection! I do really well on the Clexane so I don't mind taking it when needed. I do not bleed uncontrollably on it nor do I feel any different while taking it. The only thing I've noticed is that I scratched my arm a little through my flannel nightdress a few hours after I got home from the hospital, and I still have red bruises from that on my arm now over 24 hours later. But that's really the only way I've noticed at all that I have blood thinners in my system! I only take 40mg Clexane per day though, don't think that's a high dose, I honestly don't know other than it being a kind of heparin.

I'm sorry if I haven't been messaging individual people for a couple of days. I've really been needing to rest and there was a lot happening during my last day and a half in the hospital and then settling at home again.

I'm writing this post for my friends, and in the hopes my experience can help someone else who's facing an abdominal surgery. The surgery I had was a Total Abdominal Hysterectomy also known as TAH. I kept both my ovaries so I will not need hormone replacement therapy and I'm expected to have a normal hormone balance in my body until I reach menopause by age. I just won't bleed all the time or have the cramps that I had while still having my uterus.

It's still been a short time since my surgery, but I could feel already in the evening of my surgery day that this is the best I've done for myself! My parents have noticed a big difference in me as well, I seem more happy and energetic than before surgery. I was NOT feeling well at all on the Mirena IUD and Mini-pills that I was taking before to control my periods, and I was in so much pain all the time from the uterus and Mirena stabbing inside.
While yes, this surgery means I can never get pregnant. It was a choice I made. I have never really been wanting to have children and since my body began to deteriorate rapidly 3 years ago, that decision to not have children grew even stronger. As I am now it's not even likely I would have been able to manage a pregnancy or the aftermath of one. So for me, this hysterectomy was the absolute best I could do!

Not all women get to choose whether they want a hysterectomy or not, for some it's a must due to their medical condition, be it endometriosis or cancer or any other. My reason to have this surgery was heavy periods and a lot of pain, and not tolerating hormone treatment all that well along with it not controlling my periods well enough. But at least I had a choice to either keep toughing it out, or remove it, and I choose to remove it and remain childless.

Should I ever want children in the future, there are thousands of children in the world who needs a safe, loving home to grow up in. I don't need to risk my own health, or a child's health to be a mother if I ever wish to be one!

Surgery is just hours away!

Today is the big day! It's currently 4:45am as I'm starting to type this post. I haven't slept at all as my mind has been too busy trying to remember last minute things.
Going to take my morning shower in little more than an hour and then just get my hair dry and leave for the hospital at 7:30am.
My surgery is planned to begin at 11am but they need me to be at the hospital at 9am.

I had my pre-op meeting last Wednesday and the doctors and I talked everything through regarding my Ehlers Danlos Syndrome and what precautions needs to be taken because of it, and we also needed to switch the pre-surgery antibiotics as I have a known rather severe allergy against one of those they normally use. I'm going to take two different antibiotics just before surgery and I haven't taken either of those before so I'm the least to say vary about it because of the severe reaction I have had in the past. But oh well, at least I will be in the hospital and they can treat any reaction instantly if needed.
It was also decided that I will not get an epidural injection before surgery, instead a tubing will be placed into my spine and the tubing will be connected to a pump so I will be having a continuous epidural for several days after surgery. This is due to how difficult my pain can be to manage by oral or IV medicines.

I am quite nervous about the placing of that epidural tubing as I always have to see what's going on when being poked with a needle, and it's a scary thought that they're going in with a big needle right in between the vertebrae!

The surgery I'll be having is called a Total Abdominal Hysterectomy or TAH, it basically means that they'll make an incision and take the entire uterus and cervix out. I will keep my ovaries due to my young age as I need them for bone strength. They only remove ovaries in young people if the ovaries are diseased.

My hospital stay is expected to last at least 3-4 days, possibly longer. I'm hoping to have signal on my iPhone and iPad so I can keep everyone updated on how I'm doing, but I'm also bringing crosswords, magazines and cross stitch work to keep myself entertained when not sleeping.

I have to say it was an awesome feeling taking that last ever mini-pill in the evening! There's still 5 pills left in that box, but I no longer need them after the surgery. It's also an awesome feeling to know that the Mirena IUD is going to be out in just hours. The IUD has been nothing but pure hell since the moment I woke up from anesthesia when it was fitted, and sadly I know more people with horror stories than people who has been helped by the Mirena. That little plastic hell is a medieval torturing device!

I know it is going to be a long, tough recovery, but I also know it can only get better and I will feel so much better once the surgery has been done and I have recovered!
No more heavy periods, no more constant cramps and no more worrying about random spotting or leaks. Both random spotting and leaks have been common for me. Spotting just randomly when least expecting it, and leaks on days where my period has been so heavy I go through a super-plus tampon AND a maxi pad within an hour or two, or fill a menstruation cup and maxi pad in a couple of hours. It's awful to never feel safe and always having to worry about leaks and/or having such bad pain you almost throw up. And not to forget when I got a stabbing attack from the Mirena a while ago while driving on the highway- I almost lost control of the car while driving 60mph!

So yeah, it can only get better!

I'm still allowed clear liquids for another 45 minutes now, so time to drink a little because I won't get to drink anything again until I have woken up after surgery! I don't know how long the surgery will take, but I guess I'll be asleep for longer than I have been before.

So yeah, it's time very soon! Just wanted to give everyone an update as I haven't had time to blog lately. I have been very busy!

I have a date!

Well, if you thought I'm going on a date with someone upon reading the headline, you'll be disappointed.
I was woken up today by a loud slam in the letterbox, sounded like a newspaper only that I don't have any newspaper subscriptions and this was shortly after noon. Up I went to have a look and it wasn't a newspaper but a very thick envelope with the regional hospital logo on it.

I've got a date for my pre-op and surgery! Pre-op is on the 18th and surgery on the 26th of SEPTEMBER! So that is really soon! Sooner than I had ever imagined as I had expected to have to wait at least until October. I suspect my gynecologist has been pushing a bit for this to happen as soon as possible as he was rather peeved about me having been left in this state for several months before the appointment in early August.

I feel surprisingly calm about the surgery to be honest. Considering it's a pretty big surgery and I've only had very minor procedures done before that didn't involve incisions or stitches. I'm not worried about the actual surgery as all I need to do is sleep through it and wake up afterwards. I'm more worried about the first hours and possibly days after surgery as I'm difficult to treat pain wise. I can get enough morphine for most people to see pink elephants and I may still be in a lot of pain. I may well opt for an epidural as pain management while I'm in the hospital, as long as they put it in when I'm asleep...
There are two very likely reasons why I'm difficult to treat when it comes to pain. One being the EDS and how it for some causes resistance to painkillers. The other is the fact that I most likely have the red headed gene which also causes resistance. Going by the fact I have a lot of freckles on my arms and shoulders, and my hair looks like a carrot when I try to bleach it, I don't even need to have the genetic test done...

Other than pain management, I only really worry a bit about the healing as I have no experience with stitches and simply don't know how my body will handle it. The hospital knows about my Ehlers Danlos and they have experience with operating on EDS patients so I'll just remind them to put the sutures closer together than usual, and leave them in for longer. I just hope they won't rip through the skin which may happen with EDS. I'm also allergic to some adhesives so need to be careful with what brand and kind of tape is used. Sometimes there's differences even within the same brand. I can use Tegaderm without problems, I use them all the time over my patch, but a Tegaderm+Pad will rip the top layer of my skin off!


Other than having got a surgery date, not that much has happened since my last post. I'm battling the same crap as usual, including having an awful time with insomnia. I've been out and about some with my parents, day trips to some places in my region. The other week we went to a lakeside town not too far away from my old high school, because that town has a nice ice cream place with home made ice cream that we wanted to try.
This past Friday I was in the big amusement park in Gothenburg together with my parents, that was totally unplanned and unexpected but a lot of fun. I'm still paying for it now, by having some flu like symptoms and feeling generally crappy but it was so worth it! I had not been to that amusement park for over 6 years and it was beyond awesome to ride some roller coasters again! Had I known about that trip beforehand I could have prepared for it and rested up and would have probably been feeling better now. But heck, with things like this, it's worth it to feel crappy afterwards because you're having a blast while there! The fact Friday was a pretty summer like day with a warm evening surely made the day even better!

Will be really busy now until my surgery. Still a lot of preparations to be done to make the recovery as smooth as possible. And I've found something I'm going to try as entertainment while healing, along with it being a way to keep the family tradition and my grandmother's legacy alive- I'm going to start with counted cross stitch! Small scale at first but have found a couple of advanced patterns that I have as goal to manage one day. I hope my hands can tolerate it, but I am going to try it at least!

Now I need to fill in some documents that the hospital wants me to send back as soon as possible and then just wait for sleep to come to me... It's almost 2am already and while I am tired, I know it will be like last night if I do try to sleep now. I'll just end up tossing and turning until after 5am! Last night I tried to go to sleep before 1am, I was still awake by 5:30am :/

Extreme fatigue and exhaustion, and some general updates

There has been so much going on in my life in the past few months, with my grandmother's stroke, her time in the hospital, her passing, planning the funeral and emptying her apartment, attending her funeral and then being completely on my own for over 3 weeks when my parents went on their summer vacation, traveling north in their camper.
I have been really busy, and when I haven't been as busy, I've been needing, and am needing a lot of "me time" to recover and keep up with things.

I've had meetings and appointments lately. Last week I had an appointment at a larger hospital, seeing a gynecologist about my situation with my periods and current treatment for it. To put it simple, he was furious with the smaller hospital for not referring me much sooner, and it was quickly decided that in my case, a hysterectomy is the best option instead of experimenting more with hormone treatments or an ablation, he said 20-25% of women who's had an ablation continues to have issues in one way or another, and I just don't have the energy to experiment with that and in the end likely end up with a hysterectomy anyways.
At the moment I'm having the Mirena IUD, and also taking minipills and that's just to control my periods. I've had chronic cramps since I woke up from anesthesia the day the Mirena was fitted, and I get pain flares from it several times daily. The only reason I still keep that damn thing in is because I wanted to be able to swim during the summer, without the IUD I'd bleed most of the summer and not being able to enjoy the little summer we have.
I'll have the hysterectomy done in about 8 weeks or so. By the sound of it, the gynecologist wishes I could have it done sooner, but with it being vacation times still, there's a waiting time.

Before my surgery, I have roughly about a billion things I need to do to, things I won't be allowed to do while recovering, or need to do to make sure the recovery will be as smooth as possible. It's everything between small things like taking extra vitamins and not just rely on diet to boost my body's ability to heal. To larger things like getting my counter top dishwasher installed- I haven't had it installed yet due to summer time and so many being on vacation.
I'm also going to download some apps, audio books and other things that can keep me entertained in case I can't handle being on my laptop much just after the surgery. I need things to do to keep my mind off some of the pain, and I don't think chatting will be high on the list as I will want to focus on recovering.

I have been isolating myself quite a bit lately, and it's been my choice to do so. I need the peace and quiet in between all the things going on. I need this "time out" for health reasons.

My current situation with all the extra hormones and the pain from Mirena is making me feel like utter shit. I'm constantly tired, yet suffer with pretty severe insomnia, other days I just sleep, and can't stay awake. In the past few days I've been dozing off a lot from pure exhaustion and that's despite maybe sleeping 10 hours per night and sleeping better than usual thanks to having a new pillow in the foot end of my bed, meaning I sleep on my back and wake up less as I don't need to turn around completely during my sleep hours, and don't wake up from severe hip or shoulder pain. All the hormones is also making my skin look more teen like... I take very good care of my skin but still get outbreaks, and I know it's the hormones doing it.

At the moment I'm also facing the dilemma of having to file a formal complaint against the smaller hospital for leaving me like this for so long before referring me to the larger hospital, and for the Mirena and them claiming no one would do anything before it had been tried despite me saying clearly that I did not want any damn IUD and I felt forced to try it. I'm also going to file a formal complaint against my PCP clinic and switch clinics as there's been one too many issues with that clinic now. Their latest blunder being today when I finally had my MRI of my neck, a year(!) after my neck popped. It took 10 months or so of me begging my doctor for an MRI referral as my neck feels seriously wrong and it impacts my life a lot. And I also need an MRI of my lumbar spine and SI area which is just as important and the cervical spine as I have huge problems with my lower back as well. Well, the referral was only for cervical spine and my doctor claimed another doctor had added lumbar and SI to the referral afterwards. The hospital only had a referral for cervical spine and the MRI nurse was pretty peeved with the situation as well as I'm so young and have very obvious problems that needs to be properly checked. She even said I should file a complaint both for the time it took to even get a referral and the fact I only got cervical spine despite barely being able to stand on my legs. I can stand up for a few minutes before pain in my lower back and SI area gets so bad I lean forward and my legs start shaking, and keep in mind, I'm on very potent pain management to begin with.
My SI joints feel like someone is trying to wrench them apart with a crowbar and they often lock completely so I can't move my legs.
So yeah, on top of everything else, I need to find a new PCP that does his or her job right the first time, doesn't ignore serious problems for almost a year before even sending a referral and then sends an insufficient referral, and I need to file complaints against several doctors in different places.

I don't write here very often at the moment, and I don't chat with people much, and it has good reasons! It's nothing personal against anyone, it's in general. I need to deal with everything going on, and recover from everything that has happened in the past 3+ months.

Now I need to sleep. This post took a long time to write and I'm beyond exhausted but really wanted to finish it before turning in for the night...

Pet peeves!

I have a lot of patience, and it takes a lot to really bug the hell out of me. But there are some things that literally makes my blood boil and steam come out of my ears, and I'm sure others have their own list of pet peeves, no matter if it's people living with a chronic condition like I do, or someone at full health and a normal life- whatever normal is... 

Here are some things you should NEVER say to me if you want to only see my good sides, and I dare say you don't want to see my bad sides, so pay attention.

NEVER EVER comment on my weight! I am fully aware that I carry some extra load, but you know what? I'm happy just the way I am and beauty comes in all sizes! I'm confident with who I am and I do wear a 2 piece when I go to swim, and no one points or make rude comments. I'll never call anyone a skinny bitch, so don't you dare calling me fat! For your information, I constantly battle with low appetite and barely eat! If I was to eat any less than I do, I'd basically live on air. 

DO NOT comment on how I live my life! My condition makes it impossible to know from one day to another what I can do and not. I do what I am able to do, no more and no less and what I do varies from one day to another. Sometimes it's an achievement to get up, take a shower and get dressed. Other days I do all those things just fine and even manage to go out of town for other things than medical appointments. 

DO NOT tell me to exercise more! My body can not tolerate exercise as in physiotherapy or going to a gym, it only does me more harm than good and is very likely to have me in bed for days afterwards. I don't have enough energy as it is, and exercising only takes energy, giving me nothing in return other than pain flares and debilitating fatigue, and in the case of the local gym: a neck injury that severely limits my ability to even be upright. I do however try to live as active as possible, as in going somewhere manually rather than taking the car when going somewhere within my town on the right side of the railroad. 

DON'T EVER call me lazy! If you want to see lazy, go to Wal-Mart and watch the people shopping there in their pajamas! They most likely have no medical reason to stay in their pajamas all day, yet that's what they do and don't even change clothes when going out shopping. I don't judge people, but yeah, if you want to see lazy, look at healthy people shopping in pajamas instead of judging someone with a medical condition! You'll never see me out in public in a pajamas, nor will you see me munching on chips all day while farting and watching movies! There's a huge difference between being lazy, or having a medical condition that severely limits your ability to live a very active life! And for your information, I do not spend my days farting and watching movies! 

NEVER judge me for using a wheelchair to get around! You don't have to be paralyzed to use a wheelchair, you can also use one because of severe pain, fatigue and instability. I didn't buy my wheelchair, it was provided to me through my Occupational Therapist and the wheelchair center, and to get an "active chair" like mine, you need to meet certain criteria, which I obviously do since I have a lightweight active chair, which is quite expensive. They do not give those out randomly to people! The wheelchair helps me greatly, I can be more active in the wheelchair and be out for longer, and cover greater distances than if I'm on my feet. I can only stand up for a couple of minutes before I feel really unwell. 

DO NOT blame things on my medication, or say it's wrong of me to take medicines to manage my condition! The medicines I take are not something you can buy over the counter, nor are they something doctors look upon lightly. They are heavy duty and the type and dosage is adapted to fit me, and it took a long time for me and my doctor to decide which was the best for me. With it I can function better, I can think more clearly and physically function better. Without my medicines, I'm a useless pile of ouch that you can barely touch without making me scream from pain, and I have a high pain tolerance, a broken bone barely makes me flinch! 

DO NOT say using bracing and splints is wrong! Using joint supports is common practice for Ehlers Danlos Syndrome and I don't know anyone with EDS anywhere in the world who doesn't use bracing if their skin can tolerate it! The important thing to remember is to only use the bracing as much as you need and not more. If used right, bracing prevents injury, delays long term issues such as arthritis and improves your physical ability to do something, be it enabling you to use your hands better, or be it preventing you from constantly spraining an ankle when walking. Bracing can also relieve some of the pain. 

If you truly care, you're more than welcome to come with friendly suggestions of things I could try, things that may have helped you if you live with a similar condition. But don't ever say I SHOULD do those things, or judge me if I choose to do things my way! There's a pretty damn good reason I do things the way I do them- I live in this body 24/7, this is MY body and MY life. And unless you live in MY body, don't tell me how to best manage MY condition!  

My life is a fine balance act on the edge of a cliff. A step wrong and I may suffer really bad for a long time. I have a team of medical professionals around me. And the way I live my life and do things has been approved by the medical professionals I have on my case. 

Pacing is the key, and listening to what my body is saying, and trying to keep my hip in place when I do get in and out of the car when driving...

I also have a frog living in my chest, also known as possible case of POTS or dysautonomia, this further complicates things a bit and forces me to be extra careful so I don't pass out, or fall due to a big jump in my heart rate, especially when I stand up. 

Extreme fatigue increases the risk of falling and injuries, if you can't remember what I wrote about exercise, just go back and read it again.

So, these are some of my pet peeves... I won't judge your way of life, if you don't judge mine! I only ever give people helpful suggestions, and they can choose themselves if they want to try it or not.

I could make this list longer, but my hands are seriously killing now...

For Norway!

It's been two years since the awful terror attack in Oslo and the following massacre at Utøya. July 22nd 2011, a day that is for ever etched into the memories of those who survived, those who lost family or friends and really a whole nation and it's neighbors, and people around the world.
I still remember hearing about the attacks on the news, and I just couldn't believe what I heard. I wished it was just a bad April fools joke... But it wasn't... It was for real... The work of one fanatic extremist... One who had gotten his hands on firearms and the recipe for a bomb. I know his name far too well, but I am not going to utter it, as that's what he wants. I want to forget everything about HIM and just remember those who stood in his way that day. His victims should have never been victims, they should still be alive and happy, but they aren't, they were brutally murdered by an armed madman, a raging lunatic.

Today I think of Norway, and my heart goes out to those who lost someone in the attacks, and I'm thinking of those who died, honoring their memory.


The song below is one by the Swedish singer Laleh, and it's a song the Norwegian people took to their hearts while grieving. Laleh also performed this song in Oslo last year on July 22nd, one year after the attacks. This day and this song is for Norway!

Never forget!

Dealing with the passing of my grandmother

It's now been little more than a month since I held my grandmother's hand until the very end. A month which has been spent physically recovering from the ordeal of constantly worrying, jumping high every time the phone rang, sleeping light and traveling back and forth between home and the hospital.
I've also spent the past month mentally recovering from all the worrying and trying to come to terms with the fact my grandmother is no longer physically with me.
Her passing has left a huge empty void in my heart and there's so many things I wish I had asked her while I could, but of course, as ever so often you think of things to ask the person when you can no longer ask, things you could have asked at any time before, just by lifting the phone and dialing their number, but never thought of asking until it was too late.

The past couple of weekends has been spent going through things at my grandmother's apartment and preparing to empty it so it can be sold. It's been physically hard on me with the traveling. I could have stayed at home, but I wanted to go... Just so odd being there without my grandmother standing in the door waiting as you come down the small flight of stairs from the elevator, she was always standing there in the door when we came to visit.

A couple of nights ago as I was about to go to sleep, I just looked through some pictures on my phone and came to a picture I took in late May of my hand holding my grandmother's, and then it suddenly hit me like a ton of bricks: I can never hold that hand again!
And I cried... I cried a lot for over an hour, in the middle of the night as the sky began to get lighter outside my windows.
I took that picture about two weeks before she passed away, in the evening we thought would be her last as we had been called in to wake. I got to see her three more times before she passed away, the third time being her last hours alive, the way she must have wanted it seeing how she waited until I was there, and waited for another hour or so after my uncle had gone home so she got some time with just her only grandchild who she knew could handle being with her until the end.

On Friday we'll hold the funeral for her, it's taken long to get the funeral exactly the way we want it and believe she would have wanted it due to it being summer time and the Salvation Army Captain holding the funeral service was on vacation until this past weekend. We wanted him specifically as we got very good contact with him and he even visited my grandmother while she was in the hospital, and he was deeply honored to be asked so we waited with the funeral another week so he could be in charge of the memorial service.

It's been a very emotional week this week as the funeral approaches, been breaking into tears more this week alone, than in the previous two months put together. Trying to find strength for the funeral on Friday, I know I will cry a lot, and for a good reason... Lizzie was the best grandmother you can imagine! I feel honored to be her grandchild and call her my grandmother! Even with her only getting 16 years of actively being in my life, it feels like she has always been in my life because of how good contact we had during those years we got. Those first 11.5 years my life, I always knew about her, I just didn't personally know her.

There will always be an empty void in my heart, missing her voice, visits and physical being. But her memory is forever with me and I cherish every one of those memories!

Rest In Peace Lizzie, my lovely grandmother!

So, I haven't blogged for a while. Have been both busy and in a lot of pain lately.
As I told you a few blog posts ago, my grandmother had a stroke in May that left her right side paralyzed and unable to talk. A few days after her stroke she developed a pneumonia which happens all so often in elderly people as soon as they get bed bound and/or weakened.
Mum and I went to visit my grandmother at the hospital every weekend at least, and while my parents were out of town in their camper to have a week long vacation in early June, I went to the hospital to visit my grandmother myself, meeting up with my uncle at the hospital. This was on June 8th. My uncle was already in the room when I arrived and we sat there for a while together, holding my grandmother's hands. After a while my uncle left to go home, but I stayed as I always wanted to stay for as long as possible every time I went, seeing it was a 50 mile drive each way and I can't drive very much or very often these days.

Little more than an hour after my uncle left, I noticed my grandmother's breathing changed so I called for the nurse to come. I knew my grandmother wouldn't live much longer at the time, I had heard it before, with my adoptive grandmother back in 1999. The nurse came in and confirmed it wasn't going to be long. I called my uncle and while I talked with my uncle on the phone, I saw how my grandmother's pulse was no longer visible and the nurse couldn't find it any longer. My grandmother Lizzie, died shortly after 6pm on June 8th, with her only grandchild holding her hand and she was surrounded by love until the very end. She went very peacefully.

Many, including myself believe my grandmother had been waiting for me to be there with her, and waited until my uncle had left before she died. She knew I had been in the situation before with my adoptive grandmother when I was much younger and that I could handle it, and she knew my uncle wouldn't have been able to handle it.

I am so grateful I was able to be there for her until the very end! I wouldn't have blamed myself had I not been there due to the distance and not knowing when she was going to pass. But I am so grateful I was there! My mum and uncle are also very grateful that I was there until the very end, it's a reassurance for us all to know my grandmother went peacefully and was surrounded by love from a close family member.

I am not traumatized by what I saw, nor was I after my adoptive grandmother passed away in 1999, but I do feel a sad relief, as do my mum and uncle and others who were close to my grandmother. Of course I miss my grandmother, I miss her a lot! But I miss the Lizzie she was before her May 9th stroke. I miss the Lizzie who was so full of life, independent and always knitting or making advanced cross stitch work even at 85. The stroke took away everything that was her, it took away her ability to talk, her ability to work with her hands, her ability to talk about memories and experiences. Before the stroke she had a very bright mind, a way with words and very good eyes for her age. The only age related issue she had really was slightly impaired hearing.
Seeing in what state the stroke left her, unable to do anything herself or even communicate with words, and with no hope of recovery, falling into forever sleep and going to God was the most humane for her.

I'm an atheist, but my grandmother was a long time member of the Salvation Army, she wasn't a soldier but a member. Death to her was "going home to be with God" and while I don't share the religious beliefs, I find peace in her view of it, knowing she wasn't afraid.

Mum and I went to the flower shop this afternoon to order our flower wreath for the funeral. The funeral for my grandmother will be held on July 12th. Long time between my grandmother's passing and her funeral you may think, but here in Sweden it is very common to hold the funeral 2-5 weeks something after someone has passed away. It gives you time to arrange everything the way the deceased want or may have wanted their funeral, and it gives you time to get a grasp of the situation. The reason it takes this long before my grandmother's funeral is because the Salvation Army captain is on vacation at the moment, and we specifically want him to hold the funeral as we have good contact with him and he even visited my grandmother at the hospital, and he was beyond honored to be asked to hold the funeral and he wants to do it so we're waiting for him to come back from his vacation. But even had we chosen another Salvation Army captain (we had one other we could have asked) the funeral date would have maybe only been one week earlier, so we choose to wait.

As I mentioned above. I'm not traumatized by what I've seen, I've been through it before, little less than 14 years ago when I wasn't even 14 years old yet. Mentally I'm fine, physically I'm shattered from all the traveling and all the stress and uncertainty while my grandmother was in hospital.

I got 16 amazing years with my biological grandmother, and I'm extremely grateful for that, and the fact we got so close! Mum always knew she was adopted and I always knew I had a biological grandmother somewhere in Sweden. In 1997 mum found her and she had been waiting for 43 years for my mum to make contact, and she had known about me since 1990. My mum and my grandmother caught up for the lost years and mum also feels she got 16 amazing years with her biological mum and she's very grateful for everything.

The loss is great, but it's a sad relief...

Rest In Peace, Lizzie Andersson 1928.02.28- 2013.06.08 I will always love and remember you, my lovely grandmother! <3 p="">

Some random updates

I haven't blogged for a little while, haven't been feeling very well at all. All the traveling back and forth to the hospital 50 miles away, each way, is whacking me up physically big time, and add the stress of having a close relative being in a critical condition in said hospital, and according to the nurses, there's only one way out of it- my grandmother will eventually die from the complications of her stroke and pneumonia, the question is just when it will happen. Each time we go visit her may be the last time we see her alive.

I'm really struggling at the moment, all the driving and traveling is causing so much pain and fatigue I'm resting most of the time when I'm at home and have been very close to going to the ER a few times lately due to the amount of pain I'm in, have had a lot of flares in my neck and still don't know what's the cause of it. I'm going out for a while in my town tomorrow though, the high school has the graduation tomorrow afternoon so I'm going there to have a look even though I don't know anyone who's graduating. Will also wheel past the town hall to hand in my application for handicap parking badge on the way, got the doctors note for it today, along with the document for the patient. Hope I will get the badge very fast, it would make it so much easier with parking when I'm out with car, especially when I'm driving and can't be dropped off. Parking outside the hospital in Gothenburg is an utter nightmare most of the time! Only very few parking spaces are accessible for me out of the regular parking spots near the building where my grandmother is. With a badge I'd be allowed to park just outside the door and not have to take a risk rolling down a steep slope, or get out of my chair to walk up the same slope. I could lose control going down, or fall when walking, plus going up a slope like that causes a lot of pain. I don't even need a slope to fall for that matter. I fell just outside my apartment door less than 2 weeks ago, I stood up to open my door and then crashed to the floor. I always walk into my apartment because my door doesn't have one of those grab bars on it, so it's difficult to close if sitting in the wheelchair...

Hoping to be able to go visit my grandmother again this weekend. My parents are going out on a 1 week vacation in their camper so I'll have to drive on my own if I am to go to the hospital. Everyone agreed that my parents should go on their vacation as planned, as we know already there's no hope of recovery for my grandmother. There's no reason to set your life on pause! Even if my parents are home, we may still not make it into the hospital on time if they call us to say my grandmother has gotten worse. We do go visit as often as we can anyways.

Oh, and I have a frog living in my chest... Rapid heart rate galore! In the 120's when sitting down and jumping to over 150 upon standing up a couple of days ago, and I had a hard time getting it below 100 after that. Yesterday was slightly better and today I haven't worn my sports watch with pulse monitor belt so I don't know. At least I do know very well that I have issues with ANS and possible POTS, so I am careful and listen to my body, having more salt and fluids if needing it.

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!

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!

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.

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!

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...

Wearing green for FOP!

Today I'm wearing green, and my green silicone bracelet from Ali's Army! Ali is a young girl in America living with the very very rare condition FOP or Fibrodysplasia Ossificans Progressiva which basically means her muscles and connective tissue is slowly but surely turning into bone and will eventually, unless a cure or treatment is found, make her entire body rigid. It is a very painful and disabling condition and very little is known about it, much due to how rare it is.
Surgery to remove bone? Sadly it tends to trigger more bone growth rather than easing the problem, even a light bump against the body can trigger an inflammation and cause more bone growth. FOP is one of the rarest conditions known to man and more research and awareness is needed to help those who are affected.
To learn more about FOP, please visit http://www.ifopa.org/what-is-fop/overview.html educate yourself, wear green and spread the word!

To support Ali's Army, visit http://www.alis-army.org/

I joined the fight! Have you?

My brain feels like the Duracell bunny on speed!

I have so much going on in my head right now, brilliant plans and ideas and I'm itching to get started with it all and basically just need to decide where to put it all!
My brain is so full of ideas and thoughts it feels like the Duracell bunny on speed, and I haven't taken any drugs other than my usual painkiller which doesn't affect me anything else than removing some of the pain. I just have a very creative thunderstorm going on between my brain cells and plans and ideas unfolding faster than you can say Quantum physics!
Now if these brilliant ideas and plans would just choose to unfold in daytime and not at 4am, I'd be a happier bunny lol
I'm beyond overtired and yet I can't sleep because my mind is just too busy with my ideas!
This might well be the masterpiece I've been waiting for since I got laid off from work due to my physical health situation back in 2011!

A really amazing day!

The day had an early start seeing I had to be up early and leave home already at 7:30, but oh my was it worth it! I've had a really incredible day and just can't stop smiling!
I've been to the disability fair in Gothenburg and I had so much fun there and met so many nice people, learned a lot and for once, felt completely normal and "at home" since having a disability was the norm at the fair unless you were there as an assistant or someone working within the field of disability equipment or organizations for disabled people. I got so much great advice today and got in touch with several organizations for young people in my area, which means a great opportunity to make new friends and have a very nice social life where everyone is at the same level and everyone is attending within their own limits, no judging or no need to perform beyond your ability.
Also had a nice long chat with one of the assemblers working for Panthera Wheelchairs, that guy I chatted with is a paraplegic and he helped me remove the holders for the push handles on my Panthera S2 since I never use the push handles on my wheelchair anyways. Removing the handles and their holders has made my wheelchair about 1kg (~2.5lbs) lighter which does make a huge difference when lifting the wheelchair in and out of the car. Since there wasn't much people around at that time we had time to just chitchat for a while and we discussed how people often look upon wheelchairs- many consider it a failure to use a wheelchair unless being paralyzed, and they prefer stumbling around and being limited in their mobility, anything to avoid the wheelchair! Be it MS, Ehlers Danlos, ME/CFS or any other condition that might limit your ability to walk well. Both him and I agreed on that avoiding a wheelchair like that is really kinda stupid, being in a wheelchair to relieve legs is NOT a failure, instead, see it as a way of saving your legs for other things than walking around outdoors, in malls, at fairs and any other long distance walk that might cause a lot of pain and fatigue. For me, being in a wheelchair meant I could go to the fair today, and not just that, I also drove both ways, alone in the car! That was at least like 85 miles round trip and I haven't been able to drive that far on my own and be active for a whole day on top of it, since before my body started crashing rapidly.
For a long time, walking made me too achy and fatigued it wasn't safe for me to drive more than maybe 20 miles in one go. Now with the wheelchair, my legs are just there but not used when I'm in the wheelchair, which means they're relatively fresh when I get out of the chair and into the drivers seat and that gives me many more miles I can drive before my legs are getting too painful.
While in the wheelchair, I focus all my strength and stability to my upper body, and just let my lower back and legs rest, and that has actually made my arms and shoulders much stronger lately and my shoulders feel more stable, along with being able to cover a greater distance than I'd be able to if I was using my legs to walk.
The guy from Panthera could totally understand even though he has no use of his legs, but he does probably get to hear and see a lot of people who don't accept a wheelchair in their lives until they reach a point of no return when it comes to medical conditions causing the need for a wheelchair. If having an accident it's really not much choice when it comes to the wheelchair, but for us who has a choice... Me and the Panthera guy just couldn't understand why people wait so damn long before they just bite the lemon, request a wheelchair and get at least a part of their life and mobility back!
In the Panthera area of the fair they also showed the different models of wheelchairs they offer, I didn't take a test drive in any, but did try to lift the latest chair: Panthera X, the world's lightest wheelchair and OMG! The wheelchair frame weighs so little it's almost like lifting paper! It's made of carbon fiber and the whole frame weighs about 5-7lbs something without the back wheels on! Now that's one very light chair!
It was also pretty amazing to see how many wheelchair users at the fair were actually using a Panthera X since it's so new on the market still and significantly more pricey than the Panthera U2 Light or U2 or S2, I didn't expect the regions to cover the Panthera X that widely but seems they do! That was a very positive surprise.

I also talked with a representative from Lofric (Astra Zeneca's catheters) at the fair, started to talk since I had been dealing a lot with Lofric catheters while working in the warehouse so it was a kind of "work injury" to have a chat, and I just happened to mention how I tend to not feel my bladder and use the restroom way too little for my own good, it does happen far too often I wait for so long I get stabbing pain in my kidneys so it's not good. She had 19 years of experience of working with Lofric and she said it's definitely not good to have it that way as I have it, I have been considering the ER a few times when I just can't go and it's been maybe 12 hours since last restroom visit and having been drinking a lot of fluids. Said and done, since I know the theory inside out from having read the manual at work many times when being bored due to computer errors and whatnot, she sent a demo box of 5 with me and advised me to try it out at home and then contact my local clinic if I wish to continue with it. Not for every restroom visit obviously, but as a backup for when I don't feel my bladder or just can't go for too many hours, she said I'd feel a lot better if emptying every 3-4 hours in one way or another, it would be better for my bladder and kidneys in the long run. We only have one bladder and two kidneys and we need to treat them well! Seeing I have friends with severe retention and issues, and my issues are an early warning signal... I really don't mind self cath when needed if that means better health.

A lot of people really struggle to stay away from anything that could help them in the long run and prevent unnecessary suffering, while it would sometimes be wise to accept the help and tools that are out there when it's still a choice and not a must to use it.

I'm not bitter about my situation, I try to do everything possible to feel as well as possible and do so for many years to come. If that means using certain aid and items and medicines, then so be it! It's not a failure for me to use those things, I'm just proactive and learning and adapting while I can still choose how much or how little to use the things that helps me.

If I could just find a magical cure for the chronic insomnia, fatigue and the pain that prevents me from taking a regular job, I'd start working the same day I was cured! It's no fun not having the social life of a work place, but since I don't know if and when I get to sleep and what quality of sleep I get, and if my body allows me to be up much or not from one day to another, I wouldn't be a very good employee.
I think my call in life might be more towards socializing with other people living with a disability and get into issues about making public places more accessible for disabled and elderly people as that also helps able bodied people with young children. I also got to hear today that I have the gift of words and was suggested by more than one to consider going to schools and such to talk about living with a disability and still living life to the fullest (as much as it is possible). Kinda scary thought but I'll for sure keep it in mind and consider taking a course to get better at talking in front of a group of people.

To go to the fair today by the way required me to rest since Sunday evening to manage today, so the day I had at the disability fair wasn't an ordinary day, it was a planned outing that needed to be prepared for and I'm not expecting to be able to do many knots for the next few days. My body is literally screaming in several different octaves of agony since I got home, but I don't care because I've had an amazing day and I'm still having a big smile on my face when thinking back on the day! I wish I could go again tomorrow, but if I do I'd not dare to drive myself so dad would have to drive. I'm tired from today and have currently been awake for about 22 hours straight and didn't sleep much last night either. As much as I'd like to go again when I wake up, I doubt I'll be able to, so it's better I aim for a nice long (st)roll through town tomorrow just to get some daily exercise. I don't care how tired or achy I am when I wake up, I am going to go outside at least for a while!
Oh, and I stayed at the fair until they closed at 17:00 which meant I had been there for over 7 hours when I began to drive home, so it was indeed a long day. But oh what a fun day!
And that's how you can be chronically awesome ;)

Mum's 60th birthday!

Today my mum turned 60 and it's been a really nice day with seeing family and friends at the birthday party. Haven't seen most of them for a really long time now and wish there had been more time to chat with everyone but oh well, not much time when there's over 30 people and needing to help some with preparations between savory cake and birthday cake and such. I had made the birthday cakes, I normally make the cakes when me or my parents are having a birthday or we have layered cake for any other reason, and I always make the cakes from scratch! No cake mixes or ready made cakes from the supermarket!
The cakes turned out pretty nice both with taste and visual so I don't have to feel ashamed lol

Just wish I could have had a days break from this pesky allergy! It's so bad at the moment I was considering the ER both yesterday and today, but I'm a stubborn donkey so just trying to ride it out until tomorrow when I can call my clinic and get a prescription without sitting in an ER waiting room just to get some Betamethasone and/or a cortisone injection against the allergy. I can barely talk due to the allergy clogging up my nose completely along with restricting my airways in general. I sound like I'm having a cold from Jupiter! And think I might have just subluxed my hip from sneezing as I'm typing this, got a violent sneezing attack and as I'm sitting kinda cross legged with my laptop, the force from the sneeze made my right hip pop loudly but it must have popped right back in again because I'm not in too much pain now at least, usually comes later though...

Apart from the issues with my allergy today, I've had a really great day and it was great to see mum having such a great day too! Dad and I got her a new digital camera so she was snapping pictures all the time at the party to try it out, and she had both adoptive relatives, biological relatives and in-law relatives and some friends at the party, so I met all three sides of my family today, which is always nice :) And her friends are people I know very well and they've been a part of my life all my life so it was really nice to see them as well.

I was so happy my cousin closest to me in age could make it today as well! And I'm so happy and excited for her, she's got a car that she can drive! A car with hand controls, so now she's practicing for her license and she's really close to the tests! I'm crossing all my bendy bits for her to pass the tests so she can experience the wonderful freedom of being able to just jump into the car and go (as long as feeling one is a safe driver of course) instead of having to wait for taxi or have someone driving everywhere. Her disability is far worse than mine, loss of sensation in legs from nerve damage during surgeries so she can't drive with her feet, so I'm so happy she's finally able to drive thanks to hand controls! Saw her drive a bit today as she was practicing to and from the party, and from what I saw she's already a great driver and I think she'll pass the tests with flying colors!

Now to the big decision of the night: Do I watch The Hobbit tonight? Or do I wait until another night? I'm leaning towards tonight ;)

At war against the Alder...

Well, I found the name of the damn tree that's doing its best to kill me with its yellow sneezing powder aka pollen! It's Alder! And oh my do I suffer at the moment, my nose is a disaster, eyes are runny and my throat feels like I've been swallowing gravel (throat feels very irritated and almost as if I have cracks in it). I sound like I'm having a bad cold from hell, but it's 100% allergy!
The irony is that I've taken my allergy medicines for over a month already, and still getting this bad allergy now and the Alder levels are just low to moderate in my area, had it been high levels I'd probably be in hospital now. I will have to call my doctor on Monday and ask for a Betamethasone prescription to deal with this allergy, I should probably have called today but seeing Betamethasone and the likes aren't vitamins, especially not when you have a connective tissue disorder, I have wanted to wait as long as possible before hitting the strong steroids. Just hope I can get through this weekend without any trips to the urgent care or ER due to the allergy, yes I am that bad right now, heavy breathing and all.
I've had pollen allergy since my early teens and in the beginning my issues were very mild and it was manageable, sadly my allergy has just gotten worse with each year and since 2010 I have required steroids to manage the symptoms somewhat. Guess I'm only a couple of years away from having to consider the allergy shots to hopefully become less sensitive to the pollen I'm allergic to. Alder, Birch and grass are my worst ones but I have allergy issues throughout the whole season from late winter until they quit mowing the lawn in autumn...

I'd better try to get some sleep, I didn't get more than a short nap (less than 2 hours in total) last night, and have a busy weekend ahead. Baking the birthday cake when I wake up. I'm really feeling worse than shit at the moment but will try my best to get everything done that I need to do before Sunday, and then of course, try to get enough sleep tomorrow night so I'm feeling somewhat okay on Sunday.

The Alternative Cult and well meaning know-it-all's

I think most people living with a chronic condition has come across at least one person who belongs to the Alternative Cult, and by all means, that person might mean well, but for someone living with a chronic condition, especially genetic one, it can be utterly painful to get alternative methods shoved down our throats more violently than a paramedic putting a breathing tube into an unresponsive person who's stopped breathing. Anyone living with a chronic condition know his or her case of the condition better than anyone else does, it's his or her body and he or she know it best. Don't criticize our way of dealing with our condition!
If you have the same diagnose or a similar diagnose, by all means, share if you've found a way that helps for you and think it may benefit others, but don't start preaching it like some kind of new religion, it's bad enough we have to dodge The Gluten Free Church of Low Carb High Fat on a regular basis. While yes, altering our diets might make minor difference in our general well being, probably mostly through placebo, it does not cure our condition and unless you have a medical reason to entirely cut out gluten and/or carbohydrates, you might actually do more harm than good to yourself when looking long term. There's even been cases of stroke in Sweden that can be more or less directly blamed on LCHF diet so it's not as healthy as the LCHF followers says it is. Many living with connective tissue disorders also have bowel issues so altering a diet might send the person to a day at the loo, and we might have days of many loo visits anyways, even on a diet that our bowels does agree with.

If you do live with a condition yourself, don't criticize others for how they manage their condition! Even within the same condition people are affected differently and may handle things differently. If someone is taking heavy duty painkillers and you're not, that doesn't mean one of you is wrong, it means both are doing what's right for the individual, and due to idiots using heavy duty painkillers for recreational use, those medicines aren't taken lightly and not the first choice when needing a prescription painkiller. If someone is taking heavy duty painkillers as pain management, he or she takes that medicine for a damn good reason, so don't you dare telling that person it's wrong!
It's hard enough to accept that you need strong prescription medicines without being attacked by someone about it, and the same goes with using aid items such as bracing or mobility aid. It's hard enough to mentally accept those things without being personally attacked about it! People are not using bracing, crutches, canes or wheelchairs for fun or attention, it's used to get around better or even be the difference between being stuck at home or able to go outside.

Living with a chronic condition is tough both on body and mind, every day is a struggle both physically and emotionally and even doing the simplest of things healthy people take for granted can take an extreme toll physically on someone with a chronic condition. If the condition or disability becomes symptomatic or is acquired in adulthood, mentally accepting the new limits can be hard, and some might have to physically re-learn how to do things to not suffer as badly afterwards. The last thing we need is to have someone attacking us with alternative treatments as the only right way of treating our condition, or being told to see a psychologist or exercise more or whatever other comments we might hear far too often.

I know people who's been brought to tears by members of the Alternative Cult when the cult members are giving all sorts of advice that wasn't asked for or criticizing the person for how he or she is living his or her life with a chronic condition.
While it might be well meaning, it can feel like a personal attack, and it hurts, hurts a lot!

What you can do? Just be there, be supportive, but mainly just be there and don't push advice down anyone's throat. The person you know with a condition will ask if wanting advice and if asking, most usually turn to someone living with the same diagnoses to get some personal experience in the answers.

The absolutely worst thing anyone can do against someone with a chronic condition is to walk away or try to come up with all sorts of wonder cures. Unless you find a way to fix broken DNA, just shut up unless asked for advice, but do feel free to share something you think might be helpful, without shoving it down someone's throat, and let it be up to the individual to decide whether to try it or not.

There's no right or wrong in how you manage a chronic condition, there's only individual choices based on personal experience and symptoms of the individual.

Someone living with a chronic condition doesn't want pity, he or she only wants understanding and respect!

Spring seems to have sprung, and the biological warfare has begun...

As mum and I were outside with my cat Nisse yesterday, we saw a real spring sign outside, we spotted blooming dandelions! It's also getting warmer outside and being outdoors is rather pleasant temperature wise and weather wise.
However, it's more than us humans who likes the warmer weather, I am of course talking about the trees outside, they burst with joy over the sunshine and warmer weather, releasing their yellow powder of mass sneezing!
Yup, I'm already pretty badly affected by my pollen allergy, and that's just with low to medium levels of Hazel and another tree not even Google translate could find the name of. I'm having a sore throat and this morning when I woke up, my nose was full of what felt like wallpaper glue! A cold you may think, but no, I do get this way from allergy, it behaves a bit like a cold but without feeling sick like I do when being down with a cold. With pollen allergy I get out of breath very easily and my nose doesn't really get runny, I get the wallpaper glue instead. I've taken antihistamines for over a month already to be well prepared for the sneazon also known as spring, but seems I will need to add Betamethasone within the next week anyways. My nose got slightly better today after starting with the fluticasone nasal spray again, which also indicates it's allergy and not a cold I'm having. The fatigue is pretty bad as well, which also indicates allergy. I kinda wish the trees would have waited with their war until after my mum's birthday party on Sunday as I need as much energy as possible on Sunday and next week as I have so much going on.

Other than sneezing along, life is rolling and I've had a great chat with my Chronically Awesome friends again tonight. It's so nice to have a safe haven to just talk with others, no judgement, just talking and listening, supporting each other and share experiences. There's no comparing illnesses or competition who's the most ill. It's just supportive and I always feel it would be amazing to meet everyone in person one day!
At the moment I'm just writing this post, while smiling when thinking back on the chat earlier :)


The picture is of one of the dandelions I found yesterday!