Super Tired These Days

I have had increased stress recently as I posted the other day but some of those issues have been resolved by a term we used where I worked - "work arounds" - this is when you do something else to solve the problem - a little like patching a tire. Temporary but functional for a brief period of time. I had a busy past few days and cannot even describe how tired I am. The dogs were a bit upset today as I couldn't get up to feed them until noon. Friday a friend took me to run errands and it was a long few hours - I had lots to get done. I won the drawing at my favorite gluten free restaurant The Little Aussie Bakery and Cafe - http://www.thelittleaussiebakery.com/ because of a picture I had posted on their website - so we there Sat for lunch and to pick that up. I was very excited about it!  We had our king sized bed and mattress set up this weekend and needed to have the room cleaned before it was set up - mostly dust and dog/cat hair under the bed etc. - so we had that done Sat. morning. On Sunday morning we had to get to Costco and pick up some staples and to have them load the mattress in the truck before the guys came to set up everything. All in all it was a long three days and I am paying for it with intense fatigue and increased pain. I just hope the increase in fatigue is r/t activity and not the Enbrel. Have a wonderful day and take care of yourselves!

A Quiet Easter Weekend

I hope all of you had a WONDERFUL Easter weekend!! I spent Friday home alone with the 4 legged children - which was okay because I got some things done. Friday night I was really sentimental about the death of my parents - my Dad especially - we were very close and Easter was his last holiday with me as a well person. He was hospitalized in June, July and died here at home in August just about a week after his birthday. Saturday night after church I had the best meal I have had out in along time - gluten free chicken fried chicken with ailoli sauce, gluten free rice pilaf with sunflower seeds and salad. It WAS SO GOOD - The Little Aussie Bakery and Cafe here in San Antonio, TX . We enjoyed some of the wine we purchased in Fredericksburg, TX - all in all it was a wonderful evening. Sunday we had lunch out with my mother-in-law at Red Lobster which has a limited gluten free menu that I was very thankful for. By Sunday night I was completely done - super tired. I have noticed my fatigue increasing even with the increased Vitamin D3 and my right leg is now very painful below the knee - more in the calf. I am supposed to get my shipment of Enbrel tomorrow - so am stuck at home until it arrives. It is still very expensive but a bit less than 1000.00 a dose. Have a GREAT night!

The Definition of Feeling Crappy - ME

I went to the Dr. Tuesday - related to increased never ending fatigue and very severe right leg pain. I was told there is little to be done about my fatigue- I can try exercising as long as it's swimming in a "VERY clean pool" (he mentioned the clean part last year at this same time) and my leg is bursitis which he feels is r/t my Fibromyalgia and I got a steroid shot in my hip for the pain - of course he had to examine it and the pain was so much worse than it was when I got there. He wanted me to pick up next weeks Enbrel but they didn't have any (still don't today). I had a bone density scan - which is much more painful when you have joint pain - I'm glad the tech was strong enough to position my legs - he was probably a contortionist or at least into S & M in another life - by the time I got to the lab I was fed up - she used up her two chances and I said nope - no more!! My friend and I left - she mentioned I had gotten a bit grumpy - which we laughed about - we went for brunch - it was way too early for the Aussie Bakery much to my disappointment and both of us were SO tired she got up at 4:30am and I got up at 5:00am - my appointment was at 0800.  I have been on my own at home since Saturday night so when I got home all I had to do was let Maggie out and go to bed. Wednesday was a bit better - I had to give my Enbrel shot - it burned like CRAP again - even though I left it out 10 minutes - the side effects started about 45 minutes later and I ended up in bed with an ice pack & hot tea (sore throat) but woke up at 6 pm to vomit for about 30 minutes. Then I slept off and on the rest of the night - mostly off. Today I am tired, hungry and want to eat something rich and decadent from Aussie's but have nothing here - which I guess is good. I do have some 70% chocolate eggs - not really what I want. It's one of those days when nothing sounds good - I really don't need to eat anyway - lol.

The Envelope Please.....

After following up with the company I used to work for I was transferred for the tenth time to long term disability. They were confused but decided they should probably help me because I was starting to get annoyed...I was told my COBRA would continue and my disability would continue unless I got a "job of some kind" - somehow that didn't make since so I asked for my Case Manager to give me a call. I did give them the update on the Enbrel - which of course I haven't heard whether insurance will cover it yet. Another shot is due Wednesday - I have a sample from the Dr. but will need to ask for a couple more just in case. My right leg feels like knives are stuck in it and someone else is twisting it with every step I take. Gonna go to bed now - my appointment is 0800 - my poor best friend will have to come across town super early in the morning just to take me back across town.

Depression and Chronic Illness - At Least for Today

I've suffered from Sjogren's Syndrome, Fibromyalgia and Psoriatic Arthritis for at least 16 - 20 years - it they were called different things a long the way to this current blend of illnesses. Because of these issues I have been robbed of having children - 10 miscarriages - I have gained at least 60 - 150 lbs at different times along the way related to large and prolonged doses of steroids, have to use a cane or a walker - I have lost self esteem, friends and romantic relationships. At this point I have basically lost my livelihood, quite a large amount of my quality of life and at times have wondered seriously if losing my life would be such a bad thing. After all my parents have passed, I have no family to speak of and I feel like I am beginning to become a burden not just to others but to myself. This new medication is taking it's toll on me - I feel worse than I did when I started it and I felt like CRAP then. I can't work or drive, I have bills to pay, everyday tasks are turning into difficult things to do, I run out of disability and COBRA in about a year, Social Security Disability will take at least 2 years to obtain and so, so many people that I thought understood where I stand really just don't get it. I can't even tell you how tired I get of explaining why I can't do this or that - WORSE yet people just assume I can't go or do something because "it would be too much for her" - PLEASE don't take my decision making away. Yes people mean well but sometimes words hurt more than help. Am I gonna kill myself - no - do I have a plan - no not right now - do I contract not to hurt myself - sure. I hurt too much physically to do something to make myself hurt more. I have my closest friends, my Maggie and Lila, people I'm in love with - I would never leave any of them like that. I am just so tired of feeling tired, useless and dependent - after all I just turned 51 y/o . Do I know that other people have it even harder than I do - OF COURSE I do and my heart goes out to them. That doesn't mean I have to put on my HAPPY FACE ALL THE TIME! Please remember when you comment on someones illness to understand they didn't ask or want to be in their situation.

Ahhh Sleep - Why do you Elude Me?

It's 4 minutes before 1 am and sleep has become elusive - chronic insomnia has been a constant friend for many years but has become much more prevalent since Sjogren's Syndrome and Fibromyalgia have become my companions. I did nap today - could not keep my eyes open so I am sure that has something to do with my inability to sleep now. My anxiety about this weeks Enbrel injection, clarifying if my insurance will cover it and not being able to find my Social Security paperwork does not help because my brain just won't shut off. Unfortunately, I had a bit of a fall today - I say a bit because I didn't actually land on the floor my right hip locked and I was able to grab on to the sofa. It did twist my back and my hip so I am in pain at the moment. I've taken my scheduled pain medication as well as the rest of my night time cocktail so the pain will get better - at least until tomorrow. Sweet dreams to all of you!!