A Random Musing....

It is very peaceful as I sit here with my kitties. I am quite sure that if I leaned back in the recliner, I could clear my mind enough to go to sleep. I'm not ready for sleep yet though I am tired enough for it, but unfortunately it consumes enough of my time as it is. Due to my health conditions I have lost enough of my life to sleep since March, but it looks as if I may see a tiny ray of light at the end of the tunnel. The cortisol replacement medication should give me some relief from this ungodly fatigue that has made me the anti-life of the party. LOL I will be getting injections into my sacro-iliac joints to alleviate some of the lower extremity pain. I start those injections on Monday, and I must admit I am a little nervous about it. Maybe I need to be a little more realistic about the relief I will get, but who knows maybe they will work wonders for me. The medication change has worked for the numbness and tingling in my face, hands, and feet. I still get it, but it isn't nearly as bad as it was. So, I'll take any victory no matter how small, because after all, it is still a victory.

Lightbulb Moment........

So, I saw an endocrinologist 2 weeks ago for the tumor on my Pituitary gland, and he drew a TON of blood. He is a very nice doctor, about my age, and he took a lot of time talking to me, and my sister Kelly about what has been going on with me over the past few months. Yesterday, I had my follow-up to go over my lab work. He was going over my lab with me, and he asks me the question, "Have you ever had to take a HUGE amount of steroids for anything?" I said, "Yes I have. When I was 17yo I was diagnosed with Discoid Lupus and was given Plaquenil which gave me Steven Johnson's Syndrome which nearly killed me, and I was put in the hospital for about a month. I was put on super high doses of steroids at that time." He then nodded his head and told me that that explained my lab work completely. He then went on to say that those super high doses of steroids had basically destroyed my pituitary gland and it's ability to produce the supplemental hormones that my body needs like cortisol and my thyroid hormones. He told me that I have to take one more test next week to confirm it, but he wrote the replacement medication for me already. Cortisol basically controls your energy level. He says that is one reason that I feel the uncontrollable need to sleep all of the time, and why we cannot get my thyroid levels regulated. It is hard to look at that bottle of medication in the cabinet knowing that it could give me ENERGY, but I have to wait until next week. So wait I will. After all, I've been waiting for 23yrs......

Rainy Days and Mondays....

This rainy day IS a Monday. Wow, what a downer. I am definitely not defying gravity today. I had a doctor's appointment early this morning, so I had to get out in this slop. Thank goodness I had company in the form of my sister Kelly. We were both less  than enthusiastic to get out in the nasty weather, but we both had MD appointments. After that we had a couple of small errands to run, but it seemed like all either of us could do was yawn.

It is dark and gloomy outside, and the rain is getting harder. Zac just got home, and Louis is laying on my feet. I think I'll give in and take a small nap.......

Autumn is in the Air......

or maybe I have just deluded myself into thinking it is. The evenings, nights, and mornings have been wonderfully cool, and the days have only been getting up into the upper 70's. I do not think it will stay that way for long, but I am enjoying it while it is. We had absolutely NO Winter last year, so I hope we have a good one this year. I love the changing of the seasons, and Autumn is my favorite. The colors and the smells are positively intoxicating, and it brings out my inner witch. It makes me more in tune with nature, the earth, and myself.

So, I'm ready for the leaves to change. I'm ready to fire up the fire pit and roast marshmallows and make s'mores. I'm ready for my jeans, hoodies, wool socks and birkenstocks. I AM READY!!

Sometimes it Takes an Email

I try not to write about RELATIONSHIP issues here on my blog, but this time I decided to. I really thought that it may help someone else, so I decided to break my personal rule and speak out this time.

So, for several months, years really, off and on, I have felt really neglected at home. I am not alone, but I have been lonely. My husband is in the Army, and is preoccupied with his job. I can understand that somewhat, but I would like for him to show his family a bit of attention when he gets home which he did not. We have had great times, good times, and times when I was ready to end it, because I felt like such a non-person in my own home.Since I have been ill he does things to help me, which makes me know that he loves me. I would try to tell him about my illness, and he would blow me off or ignore me. Just like week he read through a pamphlet about my illness, and I believe it gave him a greater understanding about what I have been going through. I did feel a little triumphant about that.

So, feeling lonely this past week with everyone gone, never doing anything for myself anymore, and just wanting to do something for myself and to help something else that may feel a little bit like me I adopted an adult cat. I have seen this cat in the cages in Petsmart for MONTHS, and I thought that with Hurricane Isaac coming through the shelters would be inundated with strays. I knew it would make my husband angry, and it really did.

To make a long story he told me I had to get rid of the cat. I told him I was not, and that I had equal say so in this household. I got the silent treatment for about 18hrs, some door slamming, but eventually we started talking.

The cat, was totally NOT the issue. It was just the straw that broke the camel's back. Since my husband has trouble with verbal communication, I decided to send him an email. I knew he would read it. He is constantly checking his email, so I wrote down all of my feelings out in an email. I will keep the details to myself, but if emails will save my marriage, spice it up, and bring back the intimacy I will type my fingers off.

The change in his behavior has been apparent so far. He told me last night that he did not realize that I felt the way I did, and he understood about the cat. He was even joking about him this morning. We had a great talk last night. He told me he loved me, and I could see in his face that he meant it. I will continue to send emails.......

I'm glad I sent that Email.

Rose Colored Glasses.....

Yeah, I just bought some. I am figuring they may improve my view on the world some, because it really needs it right new plus they are really cute. I will give you the link after my rant. ANYHOO, so today was my followup appointment with my Rheumatologist. It was a nightmare. That is just about all I can say. First of all, I had never met this woman. She had always sent her PA in to see me. Then she accuses me of refusing the medications they were offering me. #1-Plaquenil- I am deathly allergic to it. I had it back in 1986 and it gave me Steven Johnson's Syndrome which is an allergic reaction that runs amok. Basically, ALL of my skin blistered up and sloughed off like I had been burned. I was in the hospital for a month, and they fixed me with VERY high doses of steroids. #2-High Dose NSAIDS-I was taking these religiously, and I was having great relief from them, Until the reflux monster decided to light his welding torch in MY stomach and keep it there. Out of a month I was awakened at least 4-5 out of 7 nights with stomach acid boiling up in my nose, throat, and causing me to vomit. So, to the GI MD I go, and what is the first thing he does is take me off all of my NSAIDS, put me on a liquid diet, place me on a different antacid(Protonix), and wait for it, scheduled an EGD for the next week. #3-High Dose Steroids- I'll make this short and sweet for you. Diabetes + Steroids = SICK GERI, sick any diabetic for that matter if they are on them for any amount of time.

Soo, After that fun introduction, and telling her that I have never refused ANY treatment from her at all, I tried to turn the conversation around, by asking her about some alternative treatments I had read about on THE Sjogren's webside. I had them send me some pamphlets, because it contains the same information as what I had red and the PA  had asked if I could get her one. I tried to hand it to the doctor explaining that HER PA had asked for it. She said she did not need it. I told her that one of the alternatives was Methotrexate. She said, "It won't work, and it may kill you, but we can try it."Insert toothy grin here.

At this point my sister interjected and said,"So, we really have no need to come back to you at all, since you aren't interested in learning any new treatments." The doctor at this time said, no, "If you need pain medication I can refer you to a pain clinic. I said, "Ma'am, I did not come in here asking for pain meds." My sister Kelly asks the doctor if she is done, and she said she was so we got up and left.

I don't think I have ever been so humiliated and debased. At one point during this whole nightmare, I spoke up and said, "Ma'am" I've been working in the medical field since I was 18 years old, and I have been working in some level of critical care nurse since 1994. Kelly looked at the doctor and asked, "Do you need anything more from us? The Doctor said no..So we were out of there as quick as a shot.....I was under the MIS understanding that she was going to help me. Boy was I wrong.....

So, hopefully, in a few days I'll have a cute pair of rose colored glasses to look through next time if I run into another total asshole

Ring Around the Rosies a Pocket Full of Posies.....

I feel like my emotions are playing this horrible game that was was based on the black plague in England. I feel WONDERFUL and sad at the same time, because Kendra has started college. I miss her like nothing I can put into words. Her name sticks in my throat, and it will only come out in a gush of tears of pride and sadness.

My best friend in the world has stage IV Breast cancer, and she got some bad news. She is across the country and there is not a damn thing I can do for her except listen to her when she needs me. There is nothing more than I would like to do than just fly over there and just have the opportunity just to chill out with her. Laugh like we do on the phone and talk each others' ears off. Just be "normal" for a few days.

Then there is me. Sjogren's central. I go from doctor to doctor, and they all want to help. They are left wringing their hands a bit. I wrote to the Sjogren's Syndrome Foundation, and they sent me a big pack of pamphlets which I intend to hand out to all of my doctors. I gave my first one out today to my primary doctor, and she was very appreciative, because she readily admits that the disease is pretty foreign to her. I hope the other MD's are just as receptive. I feel like a rung out wash rag 95% of the time that has extremely painful bones, dry eyes, and a mouth like the Sahara Desert. I want HELP! I want REMISSION! I want to be able to walk in my yard without someone holding me up. I want to be able to take a fucking shower without needing to fucking hold on to something and wanting to take a nap after I am through! Is that too much to ask?

ashes to ashes we all fall down......