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.
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