Cardio results 2/22/2010 visit

Well folks, I thought the tests I had last November showed I had nothing wrong. What they did end up showing is I have a condition called "Coronary Artery Spasms". There is no cure but is treatment. Since m,y chest pains have calmed down I have to take nitro when it happens. If they start becoming a daily problem then I'll be put on another medication. The heart itself is fine, it's just the artery & muscle to it. He also "officially" diagnosed the high blood pressure and started me on medication for that and my cholesterol medication has brought my levels back to normal which is great. Why this is all happening at once we still don't know. The good news is the heart condition could be much worse and it will be a pleasure seeing my new primary be put back in his place:) Also the glass's are helping so I will be getting bifocals so I can drive again as soon as I can afford it. The biopsy on my thyroid mass is set for the end of March. Enough about the medical stuff:) Business is going real good and my own line of mineral eyeshadow is really picking up along with the sales of my main product. I love and respect the other brand I sell so hopefully I'll always be able to offer that to my buyers. Recently 2 gals made videos on youtube about my line, I cant tell you how good it felt. They did a great job, heck it could have been a commercial it was so good. Knowing people are that happy with my stuff makes all my hard work worth it. I'm blessed that I love what I do so many people don't. I don't make a lot doing it basically enough to cover my cost and supplies. It's more like a full time hobby which enables me to take part in the work world. How am I mentally????Besides having low energy I'm doing pretty good, much better then last time I wrote. I've been trying to make more time to see friends and it's been good for me. I want more of a life then UCSF and my business, yes I love my business my there is more to life:) My resolution is to start spending times with my friends and once UCSF is done get out there and meet new people and maybe try dating:) First time in 4-5 years, lol, yes it's been that long...not even a kiss! That's a good subject, relationships...how to have one with chronic pain & illness's. It's very hard which is why I've been single so long. I've never had anyone end it because of my health, if anything it's harder on m,e then them. No one has minded my health problems or limitations but I do cause I know I cant give them what they deserve. There is only so much of myself I can give, only so much energy left each day and only so many activities I can do without having to "pay for it" the next day. I've stayed single for I do feel I have enough to give, I have plenty of love but we all know love isn't always enough. Plus after being single so long I cant picture myself being in a 24/7 relationship but I could be wrong, people do change, even me:) When the times comes when I am ready to date I will most likely try and date people who live like I do, who understands and we can help each other. The saying about living in another shoes is very true, we don't know what others go through unless we have been there ourselves.

Ultrasound report...

This week I got my ultrasound report and once again I have a document to back up an ailment. The report showed my mass has doubled this past year and the smaller mass is still there. It said it couldnt remark about the salvatory glands due to an MRI is needed to get good pictures/views of those. The reason for that is many of the salvatory glands are around & behind your jar line so the ultrasound cannot pick up the glands. We have hundreds of little glands and it did show that some in the front are inlarged/inflammed.

I'll be going in for a biopsy and depending on the results will determine the next step. The thing is though the thyroid gland & mass isnt causing my dry mouth and swelling of other glands and thise are the things that physically bother me the most.

The therpistt called again and he's rather confused....if i have records stating my many diagnosis why is the doctor sending me there. I told him I offered to mail a set to him but the dr refused them and said "if I need your help I'll ask". He mentioned if these results show I have a mass then basically I will be going to that session to pasify the doctor for it is clear my health is poor and these physical issues/diagnosis do exsist. I found out I have to pay 55.00 for this session....so I'm waking up at 4:30 in the morning, spending 4 hours at UCSF for a problem I dont have and have to pay for it, this really ticks me off. If I didnt have to pay for it and it was later in the day I'd be happy to go and show the docotr it's all in his head, not mine. Thats not the case though, I'm broke and am saving for bfocals so hopefully I can drive soon again, I dont fall asleep till midnight to one so waking up at 4:30 is very hard for me and my folks who have to drive me.

I see the doctor (who started all of this) on the 2nd and I'm going to tell him exactly how I feel and bring him copies of my old records showing everything.

I've written a lot about UCSF and latley it hasnt been good things. I must say 99% of the doctors and staff are the nicest and most caring people you will meet. My eye dr's stuck by me when they had no idea what was causing my double vision and because they beleived in me they eventually found the cause. People with chronic illness's and pain need doctors that supoort them emotionaly and physically. I know there are issues I'm stuck living with, I'll always have lupus, they will never find the "gene" causing havic in my body orl conditions like the pherial neuropathy.  On the other hand they should be trying harder to atleast stop the progression and try like the eye doctors did.

For people out there dont ever give up or give all your power to a dr your not hapoy with. Keep on searching until you found the "one" that will help you.  My Primary doctor outside of UCSF  is great and after another 9 months I'm going back to him and the dr's he wants me to see, I'm waiting the 9 months to give UCSF more time & to get into their rhuem department which is one of the best in the U.S.

For me because I've been dealing with pain my whole life I'm looking forward to not going to the doctors anymore wether or not they have helped me or not. I'm giving it another year and then I'm stopping. It gets to the point where it's causing more stress then what it's worth. My body has too much damage done and it cant be fixed, whats done is done. Yes, they might be able to stop further things from happening but thats only if they find the root cause and as my good primary has said I'm at the point where they need to concentrate on keeping me comfortable. I love my business and want to spend more time expanding that and living life to the degree I can so after this year is up thast what I'm going to do.

I'm happier when I dont have the stress of going here and there and to be honest I really dont think there is anything they can do, my bidy is too far gone....this is the life I was given. I accept that and want to soend the rest of it doing things that make me happy.  Seeing my buyers happy brings me a lot of joy. I am at peace within except when things like the recent bs at UCSF happens. Who needs that?? People that live like I do sure dont. For those who read this I'm sorry if I repeat my thoughts, feelings or information. I don't re-read each entry before making another. Between that and my memory, well, I often will repeat myself. This is it for todays entry...try and be happy, take control over your life and live it the way you want and accept the things we cannot change. Just in this past month another problem popped up with my thumbs, now along with my CTS I have arthritis in both thumb joints that is causing a lot of pain. I have no control over it but I do have control on how I handle it. I choose to accept it and stay away from self pity and thinking "not another thing" or "why me". Yes, I do have days when I feel like that but it might be an hour here and there. Once I write about it or share my feelings with someone else then it's gone. We all need to vent, just try not to sit in it too long.

A crazy doctor...what can a person do

I had this awful visit with a doc I've seen only twice at UCSF, the 1st time he was great & the 2nd acted like we never met. Because my diagnosis have been outside of there (besides my eyes, gland mass's) he wants me tested to see if it's all in my head. I told him I could mail him copies of my diagnosis and test results from my other doctors and he said "if I need your help I will ask". Well fine then!!! I was sent to UCSF and they are the one's telling me who to see and so far have been sending me to department to rule out conditions. The shrink called and believes me since I have physical proof from my scars from surgery's and copies from my Doctor and past test results. Even still I have to play this game to pacify this doctor who is leaving by the way in June. Now since it's in my file I have to go to prove him wrong which means waking up at 5:00 am in the morning to be there by 8:00 oh and it's a 3 hour process.

Wow, that was a lot of venting, lol. I almost said sorry but this is what my blog is about, my life, my real life. I wish my family would accept my health and stop hoping and wishing for a cure. All I want is to spend my life doing things I want and only go to the dr as needed as things come up. I really feel they wont find the cause until it's too late. That's how many chronically ill people live.

Many of my followers are MAC pigment buyers and many have been asking if I'm going to stay in business since MAC changed the jars. YES:) I have plenty of stock with the old jars and when I have to start buying the new jars stock then I'll be raising my price's around .25 per sample. This wont be for around a year so for now I don't have to worry about it.

People ask me how I cope....well my dog helps, my business and acceptance. Is it fair, no but breat cancer and all other diseases are not fair. Spending 95% of my life in pain isn't a way for a person to live but it's taught me to deal with pain and see the good in life. Not to take things for granted. I've been sober almost 21 years, I stopped going to AA meetings after around 10. I found myself judging others when they would get into all the drama about having a flat tire or something while I was living with this body and 24/7 pain. So I found another place to go to which helped me deal with life. In many ways this has made me a better person now if only the progression could stop i'd be grateful, lol.

I had my ultra sound last week on the mass on my thyroid and other gland problems, I get the results Thursday. I'll try and write more soon after that.

Time to rest and then go to bed. Thank you all who read and follow this.

it's been a long time....

First I don't even know where I left off and feel bad that I havent kept this caught up. A part of me has been busy with UCSF, another part is in a small depression and the rest of me busy with sales.  I'm getting REAL tired of going to UCSF 1-2 times a week, it's no way to spend life but I keep telling myself to give it to the end of this year. They have been able to find the cause of my double vision and have glass's now to help. They cant stop the progression of it but thats a one day at a time deal.

I found most doctors there are the most kind and supportive but there are a few that dont care. If they cant see whats wrong then they rather send you to someone else and not deal with you. Meeting one of those recently caused my depression and brought me down to reality that UCSF might not be able to help. Each invasive test they do just gets me worse. They keep finding things wrong but not the underlining cause of all of them. One of my old doctors told me this week that along with the autoimmune/muscle skelton that I most likely have a gentic & and enviormental gentical problems in my overall cells, genes and all those things that make up our body. Something in mine didnt form correctly, didnt form at all or I'm missing some important working genes and whatever that "stuff" is. He said I've been dealt a bad hand and may never find out whats wrong. That the doctors need to concentrate on making me as comfortable as possible and let me go on with my life. It was nice having a doctor be honest about my life span. He said it will be shortened which I already knew inside but hearing a doctor say it opening felt good. Finally someone who's honest and upfront. It's kinda like my dog, she has problems, on medications and I know she wont live till she's 15 but will to around 10. Thats how my body/health is.

I'm so tired of my life being all about my health, yes it's always going to be there but doing all these trips to the city and tests is causing more stress...when is it time to stop?  If I stop to early I might miss out on them finding something to stop the progression, i know me and will know within when that time is here.

I want to date, meet people and continue with my business that I love. Thank god for that, my buyers bring me so much joy. Yes, I wear myself out sometimes working to much but it really helps me stay in balance which is what I need.

Talking about business as many people know MAC has changed there jars, thankfully I made sure to get a couple of each of 90% of my stock before they sold out. To this date the only colors in the new jars are the 2 new one recently released. For now nothing will change:)

It's getting late so sorry for any spelling errors, I'm going to do a spell check later, lol...cant keep my eyes opened:)

12/11/09 good news

First of all I want to say sorry for not posting anything for awhile, I don't even know where I left off. The good news is I'm getting a mini laptop which will enable me to do my blog on a regular hopefully daily basis. See my computer is a desktop and in the coldest room of my place with no music, TV or a place for my dog to lay. By the time I'm done with my orders, quotes, advertising.. ect I don't have time to answer even my personal emails. The only way I would have time is if I spent all day and evening in my computer room. So for x-mas I'm getting my netbook which will allow me to relax on the couch and write as much as I want, and write hopefully daily when I'm in the "moment" not trying to play catch up. I want me readers to see me on my good and bad days mentally along with physical. Yes, I stay pretty positive but I am human and do have those days that I want to share here, the days I'm in tears because the pain and fatigue is so bad. I can handle the pain but when I get hit with both is when I'm the most vulnerable, depressed and well, it's pure hell. I'm looking forward to turning this into a real blog, just not a diary about my UCSF tests and appointments. Talking about UCSF, lol I had those heart test a few weeks back and those through me into a huge flare-up. Anything that gets done to this body now has a bad reaction and makes me worse no matter how small or big. No matter what they do things keep on going wrong and no one there knows why yet. I don't get the results back till Feb, my doctor is gone till mid January and he's only there once a week. After that hopefully I'll pretty much done with cardio, vision, GI and hopefully can concentrate next year on rheumatology for that's where the answers lay. Oh, the new glass's did help with my double visions but only in one lense so I got back in a few weeks to get the other corrected. There is nothing they can do to stop the progression of the eyes but the glass's will give me more freedom back and actually they have seem to stop getting worse so that's a good thing. They did put me on Lipator and will high blood pressure medication since for some reason those 2 are now through the roof. I'm telling ya, it's effecting everything. Before it was mainly the joints and nerve pain, now it's the top of my head down to my toes. Something scary did happen the other night that I haven't shared with anyone, I threw up blood. It wasn't a lot, otherwise I would have gone to the ER but enough to concern me since my pancreas isn't working properly. Time to end this but I am so looking forward to starting the New Year and creating the blog I originally wanted. Happy Holidays to you all and I will most likely see you in 2010:)

11/09 Medical test's, diagnosis update

It's been awhile since I've made any health updates so here it is:) I don't know where I left off so I might miss some conditions. I saw the eye specialist to see if glass's can help and he too found many things wrong with the eyes. Things the other 2 eye doctors didn't find, along with the problems I already mentioned my eye's are like pigeon toes. They don't always stay centered which is causing the double vision. Then I have more stigmatism then originally thought which is also causing the double vision. The main cause is muscle related, once again the same thing that's causing most of everything else. Well, UCSF still can't find the underlining cause of all these new disorders. The auto-immune is Lupus but the muscle disorder they still cant pinpoint and in the meantime they keep giving me band-aids to help and slow down the progression or damage. The special glass's they made did help but only on one side so I have to go back so they can adjust them and believe me they weren't cheap. Last week I had 2 long and hard heart tests along with a 48 hour heart monitor I had to wear. My follow-up appointment got pushed back till Feb so I wont find out till then the results, yes Feb 2010. That's one thing about UCSF, it takes a long time to get an appointment due to each doctor is only there 1 day a week. One of the test they injected something to speed up my heart while doing an ultrasound and yep, I got chest pains which isn't a good sign. During the test though it seemed they couldn't see what was causing the pain. I have a feeling it's going to be my heart muscles, my gut has been right with everything else. That and my last 2 EC G'S showed problems with the muscles but not severe enough to be conclusive on what was the cause. My mouth isn't getting any better, if anything it's getting worse. It's so dry any sugar or acid is attacking my teeth and causing cavities for the first time in my life. Now I'm on 2 special toothpastes and 3 mouthwash's none that help the dryness but will provide my teeth fluoride, etc. My neck is not in a 24/7 flare-up, the glands are sore everyday which needs to be checked out soon. The glands isn't a muscle problem so I really need to start following up on that. It's hard keeping up with everything since so much is going on at once and so many doctors are involved. The times when I have a week off from going to UCSF are the best, I love the breaks. They are very draining on both me and my folks who drive me to each visit. Thank god for them....they are my support system and will do anything they can. I have to say though I've never been to a hospital or Dr's that had as nice as people as UCSF's. Every department, nurse, student in training and doctor have been very nice and supportive, down to the x-ray tech and helpers. I think that's why I'm doing so good mentally, I finally have the support from a huge team of doctors. Someone asked me if they are giving me "hope" and that's why I'm doing good mentally & I said no but they give me "support" and "they care". All of them say they wont give up till they find out whats wrong but I know they might not or when they do I'm still going to be stuck with the body I have. I'm at peace with that now and that's a wonderful gift. Yes i wish it could have stopped with the nerve & joint damage and not go into the rest of the body but life is too short for what ifs. I Look forward to meeting someone someday when I have time, lol and living life to the fullest that I can. I've been to children's hospital and seen much worse, little kids dying or struggling with cancer. That's a picture I'll never forget nor get out of my head nor do I want to. It's a reminder that things could be worse and I'd live like this if it meant saving just one of them.

Finally, more of my past...

WHEN IT ALL STARTED, PAST INFO...Here is some info about my past. Besides being born with my bad knees and having many surgery's on them and my thyroid by 18 I was also told when I was 20 I had some kind of auto Immune disorder. Way back then a specialist saw it but told me it would take years for it to manifest enough for it to be diagnosed. So I continued on with my life, I was a workaholic, worked out at the gym as much as I could (got pretty buffed), in and out of relations, met my 1 true love but had to say goodbye, basically lived life. I was very attractive and turned heads where ever I went, was good with money and was a very strong independent woman.I got sober at a young age, 24 but had started drinking when I was 12. I had known for a few years before getting sober that I had a problem but the bottle had it's hold over me plus it helped with my 24/7 pain. The day came when even after getting a DUI I was drinking and driving again, it was then a friend asked if I was ready to get help. That was May 7th 1989 & the last time I had a drink. I've been blessed that through out these hardest years of my life that I've had no desire to drink or mis-use any medications my doctors have or have tried me on.Stopping drinking was the easy part, the first few years of being sober is the hardest, you have to find out who you are inside. Many go through phases and finding other "things" to fix us but eventually you will be left with yourself. I purposely spent many years single finding out who I was and it happened around the same time I got carpel Tunnel in both hands. So not only was I working on "me" I couldnt go to work either for the next year I had 5 failed surgery's on my hands. No work, no gym just me.....and it was the best thing that could have happened. I went nto a deep depression, got help and spent time with a therapist that helped me dig through the layers of protection I kept around myself my whole life.I also had to learn it was O.K. to take pain medication while being sober. My first few years I wouldnt touch it and a friend who had 20 years sober told me I needed to work on it and listenn to the doctors. a few years later I couldnt handle the physical pain anymore and god bless to this day I havent had problems with pain medications and abusing them. If anything I dont take the amount I'm allowed. Very few people can do this, can take meds and not start drinking and using again. Mine goes right to the pain, I dont feel a "mental" high and only take enough to keep the edge off.After the CTS surgery's the nerve damage in my hands slowly progressed to my elbows and shoulders and had 2-3 failed surgerys on my shoulder. so as you can see, it keeps progessing and getting worse no matter what part of my body. Around a few years aftyer my hands I was walking and bang my right ankle started killing me. I figured I sprained it but after a month it didnt go away. Two months later the same thing happened to the left and after going to the doctors I found out both ankles had nerve damage. The doctors at this time thought maybe I had fibromyalgia but one doctor didnt beleive so nor did I anymore. FM doesnt cause the nerve damage my body was creating. More coming soon, still need to spell check, sorry:)