View Full Version : Just not my day.....could use a hug.

09-28-2004, 10:31 PM
I woke up late for my day of non stop appointment. I meet my new rheumy. First female rheumy I have ever had. I had been looking forward to meeting her. Then after meeting her I just kind of felt like she was to busy to bother with my symptoms. Again I woke up late and there for got there 7 min late. Since she is a new set of eyes on my case I am hoping they finally get me a firm DX. I have had many of the years. But the next doc always changes the DX. My PCP calls it lupus. So I stick to what she says. She is my main doc and very good at sending to the spicialist I need.:flasingsmile:

I have been having this worsening armpit pain. My PCP calls it a rotater cuff pain. She is very worried since I have been on so many years of steroid therapy that there is a good chance I have avasular necrosis. I have read up on it through the world of internet space. From what I can see it can mean total shoulder replacement. I went from the rheumy to the MRI, I completely missed my husbands appt with our PCP. He made it there, however I had wanted to be there for the appt to help explain my husbands mood swings and make sure she was aware that his BP had been way high for weeks. I knew he would avoid telling her. She caught it anyways and put him on BP meds again.

I had my prednisone meds near trippled as well ad my methadone dose, to try and help combat the worsening pain in my shoulder. At times the pain almost has me in tears. It's been really hard to deal with. I wanted to know today what the problem was, of course it takes a few days for the docs in MRI to send an offical DX to my PCP. I have to wait to hear the out come. I am so moody. I want to yell at everyone. I want to scream and cry and throw things around. I know it's all the prednisone. I just don't have anyone to talk to about it. I find it hard to talk to my family because they don't understand. I think my husband thinks I use the prednidone as an excuse to be a pain in the neck. :mad: I really feel like I am loosing it. Just wanted to vent. Thanks ~Lucy :onfire:

09-29-2004, 07:38 AM
Hi Lucy;
It is a well known fact that steroids (especially prednisone) may influence your mood, resulting in irritability, nervousness, moodiness, insomnia or euphoria. Prednisone also may cause personality changes, psychotic behavior, or severe depression. It may worsen any existing emotional instability. There is not much that can be done about these particular side effects other than to be aware of them. Perhaps you should print out the side effects of Prednisone and let your husband read them.
I made a point of printing out all of the symptoms of each of my illnesses and all of the side-effects of each of my medications and sitting with my husband and reading them all. I feel that it is important for our family members to know everything about our illnessess and how they affect us. They cannot help us if they do not have information. Even if your husband reads some of the posts on this forum, he might have a better understanding of what you are going through.
Your pain medication may also be contributing to your moodiness and when taken in conjunction with prednisone, it would be very difficult for you to escape mood changes. Especially considering that fact that pain, in and of itself, is notorious for changing ones mood. I like to refer to the wounded lion...a lion in pain is the most dangerous animal in the jungle. Pain, alone, makes you irratable, short tempered and depressed. Lack of productive sleep due to pain and medications exacerbates these mood changes. So, I guess what I am saying is that there is almost no way for you to avoid your mood changes..you have so many factors which make them an almost forgone conclusion. You are doing the best thing that you can...venting and being honest about what is going on. It is your family that needs to be educated in order to become empathetic.
We are here for you anytime that you need to express what you are feeling. We will never minimize what you are going through..we understand and want to offer you support and comfort.
I wish you the best!!!
Peace and Blessings

09-29-2004, 08:17 AM
Hi Lucy!
Vent all you want. I am with you. I am having a lupus day! It gets so aggravating! I have read some of the posts and you are strong. This won't last forever, it will get better. I am here for you! You can throw things at me and vent and it wont hurt my feelings. Talk to me any time!
We can have a real venting session. Stay strong...I know you can get thru this. My prayers are with you.

09-30-2004, 02:29 AM
I am feeling a little bit better today. I am very thankful that I am handling myself a tad better now then I was yesterday. I still just feel so on edge all the time. I want to bite someones head off. I really have no reason to be feeling this way

That's not really true either I am terrible at allowing myself to express any kind of anger. I always put on a nice smile for everyone, even when I am very hurt or very angry at such person. I don't like to rock the boat or complain to much. I feel like I complain to much as it is when I say anything about lupus. :bad-words:

In my current living situation I feel even more muted because I am living with to very control freak kind of people who are in the middle of a huge power struggle. I feel very stuck in the middle of the whole thing, because one is my husband and the other is my ex husband's wife. She is also one of my best friends She has been there for me through so many lupus flares and scares. She has often been the rock my husband has not been able to be.

In late May my husband lost his job and we had already been living paycheck to paycheck. We had very little money saved. I mean like we had less then $200 saved. Of course that didn't go far. It was gone in a week. My hubby went right back out and looked for any work he could do. He met a man over the net that needed a laborer. He was promised $15 an hour. A huge pay cut, but money is money. He worked for this man's granite company for just about 2 months. The work was never very steady. Still we needed whatever income we could get.

My husband had been working uder the table but had wanted to go to regular over the table W-2'ed work. This man he was working for agreed ,but he kept putting off getting all the paper work to him. We both knew something fishy was going on. So my husband asked to get paid since it had been sometime since he had been paid. His "boss" paid him for so called 2 weeks of work with what he called an estimated amount of taxes taken out. Then we really knew something was going wrong and knew he was going to be getting ripped off. My husband kindly and firmly asked to get the forms and pay stubs. We needed them so we could get some fedral/state help for all our sliding bills rent/electricity/sewer/water/phone.

All the sudden this man my husband had been "employed" by fell off the face of the earth! He changed his numbers. He stoped returning e-mails and any attempt my hubby made to contact him. By this time my poor dogged husband was owed $1200+ in back pay. Only we have been left with noway to get the money out of this jerk! :mad:

Our rent went late and we searched for help within our community. It was a full time job finding anyone able to help us get our rent paid. We finally got half of our 2 1/2 month late rent paid. It left us with $1500 to pay. Since, my husband had not been paid and we had used up all the programs in our area we get an eviction notice. Now we have to move. Our electricity has been disconnected. :evil:

We begged for help from every family member we could. Either they couldn't or just simply refused to help. My father has ben angry with me for the last 13 years for going against his judgement and had children when he said I was to young and to stupid to have them. He was right I was to young. But it was done. I had all my little shinning stars. I wouldn't change a thing about them or even the fact that I had them before I finished high school. I finished with honors a year ahead of time with two kids ages 11mo and 22mo. I did it without his support as I have the rest of my life. Still, I begged everyone I knew to help me out. Just so we could get ourselves back on our feet.

Only one person came to our rescue. My ex husband's wife. She kicked right into high gear and invited us into her small 3 bedroom apt. She and my ex have 2 kids of their own. Plus my husband myself and my 5 kids. We moved in. Well, and are still moving in. Like I mentioned early on. She and my husband are in a constant tug of war. They are both used to being the dominate person in the home. I am just grateful that they are allowing us to stay with them at all.

My husband works as much as he can through temps and through family members who own companies. We have found that although we are not paying any of the rent we are paying for just about all the food and all the childrens needs. My ex and his wife have a ver bad money spending habit and often seem to be out of money even though they both make decent money. And here we are with nothing, We are watching all 7 kids while they work. We are feeding all of us and we are doing all the cleaning. Or should I say I am doing all the cleaning and child rearing.:agrue:

I don't know what to do. Because we don't have enough money to live on our own :cry: However we are paying all our money towards supporting ourselves and them. Somehow there are always hurt feeling between the two fo them. :roll: Here I am stuck in the middle. I love them both! My husband has raised without difference all my children even though only the last 2 children are his own. He has been a darn good father. He has done the best he possible could :angel:

My ex's wife has been there for me through thick and thin. She has saw fit to look past the fact that I am her husband's ex wife and mother of most of his children. She has come to my aid more than any one person should have to. She has brought my family into her home when I was unable to walk and care for my children on my own. She did it without asking for anything in return :lilangel: I feel blessed to have her in my life

But, the two of them are making me crazy! REALLY crazy. They can't agree on anything. They look for things to fight about. It's a struggle everyday. I fear they want me to choose one of them. I never could or would make such a choice. I am married! I just am so overwhelmmed right now. I don't have anyone to talk to about all this. I feel like I have failed my children so badly. I can't work. I can't hold down a job to save my life :!: My children should have better, no they should have the best. Till now atleast were money was concerned they have never had to worry about where their next meal would come from or where they would end up living. I hurt so bad In my heart. How could I be failing my beautiful perfect adoring children so badly :?:

OK, ok I know this got way to long and I am putting you all to sleep :sleeping: Here I went again and over vented. I know we are going to get through all this. We are doing all we can to get food stamps and maybe a little cash assistance till my husband can get okay'ed for his unemployment. Thankfully my whole family is now able to get medacaid. So, I no longer have to worry about how all my medical bills are going to be covered. Oooopppss there I go again babbling away. Sorry this got so long and drawn out. Thanks so very much for letting me whine and complain. I really do feel much better just putting it all in words. Big HUGGIES everyone ~Lucy :smilecolros: