Is There ANY End to This Fatigue?!?

I can't remember ever feeling this awful....the past few weeks all I can think of is when I can go back to bed. It's been 8 wks since I started the Enbrel and even though I was fatigued before it has insidiously gotten worse and worse. There hasn't been a day in the past 2 wks that I haven't taken a nap during the day and/or gone to bed before 7 p.m. Have you ever not been able to put your finger on in it but just feel horrible - well that's the description of me these days. I have been having flashes of light in the peripheral vision field of my R eye intermittently for about 4 days. I have tried to get an Opthamologist appointment and will need to call again Wednesday. My Rheumatology appointment is tomorrow - I really don't know what to tell him - except I feel like crap - very helpful description of symptoms don't you think? - lol . Will let you all know how things are going. Hope everyone had a wonderful Mother's Day. If you feel even half as bad as I do HANG IN there!!!

Feel Crappy - Stressed Out!!

Some of the issues I had a few posts ago are slowly resolving themselves with the awesome support I have from friends that are family I haven't become homicidal as yet - lol. Today I was on the phone for 2 hours trying to get my disability issues taken care of - to little avail but talked to someone different who seemed a little more empathetic and professional. Keeping my fingers crossed. Stayed in so far this week which is sometimes a little less stressful especially today being Enbrel day. I plan on getting out to run a couple of short errands with a friend driving and having some help tomorrow getting the house a little more organized. I really want to take full advantage of my time while my friend is between jobs. I just have no energy and with that comes little interest in completing physical tasks which zap the little energy I do have. So with help I think some things can get done around here. I have a Rheumatology appointment next week - boo hiss - hopefully I will get some good news. I know I have tons of questions (which I need to write down before they are "poof" gone)  about the Enbrel and other drug options as well as medical treatments I want/need to have done before I lose my insurance 3/12. Will probably go to bed early tonight - just feel crappy. I am researching some gluten free and autoimmune connections which I will share as soon as I have it all compiled - at least my brain still can problem solve - lol!!

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!

Stressed Out vs Just Crabby

As most of you know I was expecting my Enbrel 4/26 but didn't get it until a few hours before I was due to take it 4/27/11 - so I was stressed out about it - I don't know why it just makes me feel crummy anyway. The cost was much higher than I was told it would be but less expensive than the regular pharmacy so I really can't complain about that either. People ask me how I am and I probably sound grumpy because I usually say I suck which in many cases is very true. Mostly though I think I'm just tired of the waiting game and my inability to just get up and go when I want to. I feel like I have no control over my finances, health or mobility. I wait a lot for other people especially over the phone - the insurance company r/t the medication and the cost, the disability people because I have yet to get my direct deposit - normally arrives on the 18 th of the month and of course I've already paid bills because if not they would be calling as well - then there are the 401k people who promised me a certain amount of money but told me I to wait for HR to fax over the forms so they can send it and the Social Security people - you get my drift. The WORST though is when they get it wrong and I have to get back on the phone and explain it all over again to a different person who has NO idea what I'm talking about and then that person gives me totally different information from the last - most recently with my HR department and IRS people. Of course there are the people that say they will call you back and NEVER do like the homeowners association for my rental condo. I feel like a lady in perpetual waiting while all around me other people want whatever is they want from me ASAP. I think I sound like a little old lady complaining about the government - lol. I'll tell you with the amount of pain I'm in I can only imagine what those people that go nuts over the phone or public places must be going through to finally go off.
Well - another glass of wine will prevent me from acting up - no worries folks. In the meantime I will be stressed out which of course causes more pain.  Ho Hum!!

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!

A More Productive Day

I woke pretty tired after yesterdays outing with my bff to her MD appointment and to run errands. We still had quite a few errands to complete today. Everything got done in a timely manner and we even had time for a quick lunch. So I was lucky to spend time with great company. I spoke with both insurance companies and the saga continues with them. Perhaps tomorrow I will get some firm answers (HAH). After I got home and put things away it was time for my Enbrel injection - Boo Hiss - I had a bit of a pet issue right after that - Leilani puked on the sofa - then all of a sudden I got nauseated, dizzy and had a sore throat - well 45 minutes sure moves fast. I slept the rest of the afternoon - waking up at 830pm - will have trouble sleeping tonight - my own fault. My body is telling me I got a lot done today - hmmmm - I still am happy that I got so much done!

Ah - Insurance Companies That Know Nothing - Ho Hum

I've mentioned I am awaiting insurance approval for my Enbrel - in the meantime I am getting my weekly dosage from the Md's office sample bank. That can't last forever as I am not the only one needing the medication. I got a call today from another pharmacy company which my insurance "outsources to get through all the red tape and making sure that you really need the medication - we contact the Dr. and fill out all the paperwork" - when asked who pays for their services I was told it is adjusted into the co-pay for my medication. They cannot tell me how much my co-pay will be or when it will be approved. In the meantime I got a call about the life insurance letter I rec'd and followed up on yesterday - they were "letting me know they really don't know what is going on yet and a supervisor will be contacted to see if they can help them find out what's going on." OK - so all and all no one knows about anything at this point - including me - lol

No I'm Not in the Hospital - Yep - Just Home Vegging Out

I have gotten a few e-mails, phone messages and facebook messages asking if I had been in the hospital because no one had heard from me. Nope - been here vegging out - just lazy I am guessing. One of my great, great friends took me to the Aussie Bakery to pick up supplies & have a bite to eat on either Thursday or Friday (my brain cannot remember details these days) and my significant other picked up some cake from there the next day - which was AWESOME since they were closed Sat night due to San Antonio's Fiesta celebration. We had a nice quiet dinner out 2 nights - great since cooking was not in my future. I did make a nice meal last night AND managed to clean the kitchen up the same day! I have felt fairly down physically and mentally lately - not sure why actually but I know my fatigue & pain are increasing while my mood vacillates between ok and not ok - lol. Sometimes I think I am Dr. Jekyll (? spelling) and Mr. Hyde. Today has been a day full of joint stiffness and generalized pain - took an extra pill but to no avail as yet. I did get word the Enbrel has arrived at the Dr. and hope to pick it up tomorrow for my Wed. injection. If I was a car they'd have me in for a tune up - lol.

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.

Insurance Companies are Calling the Shots - UGH!

I've gotten a lot of sleep over the weekend - probably due to fatigue, stress and depression. The pharmacy called with a recorded message to let me know my prescription was ready. I called back to see which prescription it was. They told me it was for 2 doses of 25 mg Enbrel - I had given myself 50mg Enbrel on Wednesday - they also said the Enbrel card I had given them wasn't going to cover any of it and the insurance company had denied it - so bottom line 1080.00 for 2 wks worth - perhaps the wrong dosage. I told them I'd have to find out from the Dr. So far I have called twice no word back so far. The last person I spoke with told me I could come in for the shot next week but she couldn't tell me if insurance would cover it. I am SO frustrated with all this crap!!!!

Relief from Side Effects but not from Sjogren's

I gave myself the Enbrel injection on Wednesday, felt horrible 45 minute - 8 hours afterwards. felt like crap Thursday and like a hibernating bear most of Friday. I have not noticed any relief from Sjogren's Syndrome.  We had planned to take each other on a date Friday night so I made sure that I slept well throughout the day to be up for it. I got up at 4 pm and we took a bottle of Riesling we got in Fredericksburg and went to the gluten free Little Aussie Bakery. It seemed like a lot of other people had the same idea - it's a BYOB but everything has to be 100% gluten free. It was pizza night there but surprisingly there were mostly older (like myself) couples with their bottle of wine and intimate conversation. Our conversation consisted of work issues and on my end medical issues - my Dr. had called from his personal line to discuss how I was feeling but I was asleep - so I had called back and let him know & insurance still has not approved the Enbrel. After a couple of glasses of wine we advanced to much more interesting conversation....This is not a romance novel - lol. Have a great weekend.

If Only My Brain and Body Were Disconnected

I tried to go to sleep early last night - the key word being tried. Sleep eluded me primarily because of stomach issues - the way it did with dose 1 of Enbrel. So I am VERY tired today and still have body aches, feel cold and have the lupus like rash. I know the Dr. said it was not r/t the Enbrel but it sure seems like HUGE coincidence. Today my great friend came by and took me to pick up my taxes, we went to the post office and had a quick bite to eat - all in all a pleasant and much appreciated outing. We were only out about 1 1/2 hrs but I feel like it was all day. As it gets later in the day I feel worse - no fever though. Mentally there are lots of things I want to get done - physically ain't no way - lol. Am off to bed - have a wonderful Thursday!! Oh - I had some questions about what Enbrel is so I am including some links about it. http://arthritis.emedtv.com/enbrel/enbrel.html

Dum Da Dum Dum (DUMB)

It's been a week since I saw my Rheumatologist and the Enbrel was started. They still do not have the prior authorization approved for the Enbrel. I have given myself the extra sample from last week. It didn't burn as bad because I let it sit out 15 minutes before injecting it. The nausea has come and gone at this point I feel especially tired but that could be from my earlier outing. A dear friend took me on errands today - post office, shoe shopping, lunch and then to the Gluten free restaurant for supplies. We had a nice time as always - the weather changed last night and I am very stiff today but it was nice to get out like a normal person. I did find some tennis shoes - really the only kind I wear now related to my poor balance. We got everything done pretty quickly so I could get back and give my shot at 3:00. I am wondering what I will do if the insurance company doesn't approve it - I guess nothing huh - lol. Tomorrow it's my other dear friends turn to tote me around - my taxes are ready and there are a few things I need from Whole Foods. We will see how much I feel like doing - planning on going to bed VERY early tonight.

Ho Hum

As I mentioned in my last post I am the only person here this weekend and am a little bummed out about it. Nothing can be done though the other house needs attention and it can't be done during the week because of the owner's work schedule. It kinda sucks because the weekends are the only time we can spend time together but I totally understand  - not that I like it but I understand it. Last night I cooked an Amy's spinach rice crust pizza - it was HORRIBLE - I ate a couple of bites and decided to toss it - before I did I offered it to the dogs even JANET wouldn't eat it - lol. I was blessed to have good friends come by yesterday and take me to the CPA and to mail 2 of the packages I could get ready - had problems getting the printer to work so I still have 6 to mail and my COBRA payment to next day air. I also need to go to my the gluten restaurant to get fun things to eat.  It will all get done with the help of my friends.  I am happy that my stomach and flu like symptoms have resolved but the mottled look to my skin is still pronounced  - my Dr. calls it a lupus like rash - I've had it since I was on Rituxan but it intermittently flares up as it is now. I am NOT looking forward to my second injection of Enbrel on Wednesday - hopefully the symptoms will be less than last week.

Feeling a Bit Better

I went to bed at 7:45 last night with continuing stomach upset, chills and feeling like I was coming down with the flu. Had to take an extra pill - something to shut my mind off - would have never slept at the pace it was racing. NO - I'm not Bi-polar (according to the letter from my Psychiatrist - lol) just very stressed with the symptoms, cost associated and concern about the potential long term issues with the Enbrel. I did manage to make a decent gluten free dinner last night - using San J gluten free Teriyaki sauce purchased at Whole Foods. It was actually very good except for this morning when I had to finish the clean up process. On top of that am trying to get some clothes washed. I haven't been able to eat much today r/t nausea - just some soy milk with cereal and was hoping to have some flavored water (no sweetener of any kind) but to no avail - perhaps I can get some tomorrow. I will be alone here with the furry kids for at least 24 - 36 hrs or more - work has to be done at the other house - of course chores are never ending. One of my dearest friends was so kind to volunteer her time tomorrow to take me on those errands which have been pending for days. I will need to triple check that I have everything together for outing. I have been looking for my Social Security paperwork - I put them in a RED folder - so much for organization! Have a WONDERFUL weekend!