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Long Journey

Mar 31, 2008 - 2 comments
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journal

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multiple problems

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Pain

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Where do you start? I am a 50 y/o female that has been riddled with problems
since a child, and to this day I consider myself a strong woman in many ways.
A fighter who refuses to stay down, however living with chronic pain and so many
different diagnosis leaves me baffled and confused. I have no idea who, or what to believe anymore.

My hx is as follows:

1973 Nearest to my what I can re-call, Riding horse up to lake, sketchy at best. I remember very little despite therapy. I do know I was attacked, raped, tortured and left for dead. Why I don't know but I get this incident confused with another horse accident that left me unconsious and in the hospital with serious head injuries, back, and left shoulder. Bleeding from the occipital region. There idea is it was two separate incidents. One up at the lake, and one in my pasture. I keep thinking or seeing my horse taking me home and then falling in the pasture. My brother says I was out cold for quite awhile. He did nothing. I guess he didn't know what to do.
Anyway some years later more memories came back about up at the lake. I thought they were nightmares, but turns out it was related, and even though I know certain things that went on up there..I can't seem to say them outloud, because its like out of a horror movie. Anyway I can't go any further on that one.

1974 hospitalized for inability to breathe due to a problem in my left chest. They never really said right out the dx of this condition but I was given injections deep in my left chest with gold. Within a few days I was feeling better and all I was told was don't sleep on hard grounds, twist to fast, things to that effect. They said this shot should last around 10 years, then the swelling and or pain may come back.
Never did tell me what it was, or what the cause may have been.

1975 married, had my first child in 1976..breech but otherwise ok. Always had trouble with large clots and over bleeding. recommended tx was the pill. It didn't work, and I continued to bleed heavily until 1980 when I surprisingly feel pregnant with my second child which they said I could not have any more children, so she was a miracle. Everything stopped for awhile, and she was born natural and perfect in 1981. I had tubes clamped at that time.

Between 1982 - 1990 I started having numerous physical problems, pain, fatigue..especially my eyes. Tests were given and I test positive for hypoglycemia, Epstein barr virus and I was sick for 6 months with swollen glands and the works. Wihin this period, I also was suspected of myasthenia gravis and tests were done for that, as well as cushings syndrome. My ACTH was high, but nothing more was ever done.. They decided it was all in my head and said I had depression, and man those pills made me sick. I wan't depressed at all, but I took them, and the nsaids for my neck which decided to start giving me trouble. Dx with osteoarthritis, and I was only in my twenties. Given Lodine, to which it was some relief. Numerous endocrine tests were done, some positive some negative..but all in all they still didn't know what to do with me.
I started having heart trouble at this time. Cariologist dx me with just a venous stasis problem, so I didn't worry about it. At the same time I developed Skin Cancer on my chest and it was chemo-froze. Still have trouble with that area today.
1989 I had to have a hysterectomy due to clotting, fibroids, and polycystic problems.
They left one ovary, which ruptured the following year causing yet another major surgery. I am 28 at this time.

1990 I started having runs of tachycardia, and other rythmn problems, dizziness, blurring of vision, and blackouts.
Pyschiatrists started getting in the picture now and I was a guinea pig for all kinds of tx. First dx, Anxiety/panic/depression. bipolar which was ruled out later. With all the different meds I had I became so hypersensitive to medications that I reacted very poorly with all of them.
One pyschiatrist said my problem was physical the rest did varying degrees of dx depresson/anxiety/panic/ptsd plus I developed extremely high blood pressure at this time and they put me on verapamil..which was the biggest mistake ever. my tachycardia got worse, and I walked in off the street...they did an ekg..slapped a nitro patch on me and sent me to a cardiologist who put me in hospital and ran alot of tests then dx wolff parkinson white syndrome with possible AF and angina. He pulled me off the verapamil saying this can cause SVT in people with my problem. Well up until then I didn't know I had one. I was put on metoprolol at this time.

I did complete all therapy because at this time I now needed it. I tried to tell a dentist not to give me epi with the novacaine, but he didn't listen and I went into crisis, which put me back in the hospital being zapped.

1994 Got pnemonia off a toxic reaction to chemicals related to electronics. freon and similar solvents were used at the plant I worked at for x10 years. Went on to develop asthma where they put me on steroids, and two inhalers.
Eventually after moving to the east side of the cascades I was able to come off those meds, and rarely have trouble with asthma today.
Decided to go into medicine and during school I had to have gallbladder surgery, and I had a little breakdown so I was placed in a home for a couple weeks, and put on xanax, trazadone, with the help of a very good friend who continued to help me study, I managed to keep up my grades and completed my program with a straight A average. Couldn't have done it without the help of my friend. I was so excited. I got to work for a private doctor where I was his main nurse, and it was an er clinic, so the variety of duties were wonderful. I loved my job.
1996 was diagnosed with glaucoma and put on xalathan drops. Been maintaining ever since. Had laser surgery last year and haven't been on drops since, even though he wanted me to trial test trusopt, I was unable to see him the next two visits I had with him, and no one told me to stay on them. So I didn't. Had field tests, and Hrts were to be the next possible test. Regular maintenence to continue.
Also had colonoscopy and endoscopy which revealed a lesion in my colon, which turned out benign and a 4cm hiatal hernia. So IBS was diagnosed but with hx of cancer in family, wants to keep an eye on.

1998 started bleeding all the time with bladder infections. One would end another started, Put me on cipro for over a year. Don't think that was so safe considering the antibiotic problems today. Went on cranberry juice which helped significantly. Was able to come off meds in time.

1999 Still on going with therapy I wound up with a really violent man. To know him outside the walls no one would believe it, but behind closed doors I couldn't do anything right, and actually to get hit didn't take much. Unless you are in a relationship like this, you can't begin to understand the mind games and brain washing that goes on to keep you locked away so to speak. The only thing that held me together was my music. I wrote and sung and played and prayed that someone would answer my call or at least figure it out. No one came to my aid during this time, and my heart condition became worse, and I lost my long time friends because of him.
I went in for an ablation to take out the extra electrical pathway, but there were complications and the R. coronary artery was torn via the camera spirally down to the aorta. This resulted in open heart by pass surgery, so needless to say I was stunned when I woke up. Plus I still have the wpw and will be maintaining my care via metoprolol and following up with cardiologists as needed.
After I got home, I got sexually abused during my recovery which was horrendous, and he was a twisted man who did so many unspeakable things to me that I am surprised I survived. He took me away to Oregon..far from anyone I knew. I was terrified but he could twist everything every which way to where I thought it was me. I became very depressed, and the psychiatrist tried all kinds of meds again to help me. Lexapro, neurontin, xanax. You name it..he tried. I didn't speak up about my situation fully until I apparently disassociated and hurt myself without knowing it. After that I got a new diagnosis of Borderline personality disorder. I have no clue what that is, but my therapist disagreed and said it was ptsd. Anyway all in all I guess the Major depressive disorder/Anxiety/panic disorder and ptsd were the ones they were staying with. I had private therapy/group therapy/cognitive, and then dialectal was suggested, but by this time I really wanted to escape. I never had money so I started sneaking and saved up for a cheap car to which he would take the distributor and play all kinds of games with it to make me crazy and keep me in while he was at work. I tried several times to leave, and it never worked. He always found me but then one day I got enough courage to try it again with the help of a couple people on the net from a game I was playing. I screamed help and I got it from a couple strangers far far away.
It took two more years before my break because I woke up with a shoulder that wouldn't move and was agonizing. They called it frozen shoulder. It took lots of therapy, and cortisone shots but eventually I got the movement back. I informed my doctors at this time what I was doing and asked them not to contact him ever.
Unfortunately or fortunately whichever way you look at it...I got in a minor accident and we both exchanged insurances then went on our way. The next day I had made it to the other side of the mountains, and had no clue where I was. Just needed to find a place to stay. I was on disability at the time so not much money to work with. I switched my bank accounts then continued to drive northward. That is where I forget everything. I was in a major car accident and seriously injured and wound up in hospital. I can't tell you how it happened. I don't remember. I did tell the policeman about my running from a bad man. The hospital sent down a social worker who secretly works with the communities for battered women. After I healed up a little they sent me to my first shelter. I had no idea what to expect, but it was the path that was chosen for me, and I thank god for them. I'm not sure what would have happened to me if not for their help. It wasn't anything like I'd imagined. They had a wonderful program in a beautiful large secluded home with loads of security. There were others there and understanding workers held meetings and therapists to give us a better understanding of the cycle of battery. Now I understand. Before I didn't. I still feel stupid, but I do know why some can't leave.
After about a month, I was given a choice of where I would like to go to start over. So I chose an area and they paid my way there and got me into another shelter that was just as wonderful as the first. This is where their help with me helping myself started. They gave us clothing, a car, helped set up housing which for me because I chose the 3 year program was in a nice apartment run by them that is fully secure and comes with therapy and really cheap rent based on my income. I am not sure why they chose me for the program. Maybe because I really wanted to work at it, but I will be forever grateful to them all. My private therapist was a wonder. She opened my eyes to so much, and I worked really hard with everything. I got the divorce done on my own, and no one ever found out my location. The only thing my kids, parents, and friends never contacted me via the center, or my new place. It was pretty lonely. Then out of the blue, A friend from the UK came all the way across the atlantic to the western part of the states to help get me through this. I couldn't believe it. He went through all the privacy issues and signed papers in order to get to come visit me at my place during the day. The next thing I knew a few months later I was hopping a plane and going to the UK, where I stayed with his parents for about a year. Talk about sudden and what the heck? I guess this is where I was supposed to start my new life, otherwise I can't figure out why I jumped so fast at leaving my country.
It turned out great. I have a new lease on life and a bit of weight off my shoulders. I still have problems but I feel safer. I have now been here almost 4 years. All contact with my family is via internet. I am so torn between one shore and another, it is hard to know what to do sometimes.

Medically for the most part, I am stablized, but within the last year or so I have been having terrible muscle and nerve pains that burn and twitch. I have tremor with occasinal involuntary jerking of my arms and legs. This is where I am at now.
I also have chronic otitis externa..which bleeds then heals. Never had this before either. I just want some peace and a bit of pain free living for awhile. I have a wonderful supportive husband now and we'd like to do a bit of sight seeing when I can get this latest bit under control.

I'd like to add that during all of this I managed to live a pretty full life. I truly enjoyed raising my kids, we did all kinds of things. Sports, camping,fishing,
traveling,swimming, and my favorite..scuba. I love my music and will continue to savour that dream. Ride horses on the beach, do trail riding and hiking in the mountains. There was nothing we didn't do. I had a great life despite everything and now I guess I just want a little less pain, and some of my activities back within reason of course. I really miss driving! I so want my license here:)
I have no friends anymore, but my current husband is also my best friend, and the one that got me through school is still in contact. It's hard to make new friends in a different country, but then again, I used to be really outgoing. Now I am not so that probably has something to do with it as well as the fear of losing them again.

Please forgive any sentence structure errors. I have trouble with my short term memory and my thought patterns often go out of whack.
Here is to the future and I hope I get to see my grandkids soon.
Oh yeah, in case you were wondering my kids were from a great man I was married to for 19 years, and I am grateful they never got to meet the bad man. I made sure of it. They are now respectfully ages 31 and 26 both with their own families and very happy. I just miss them terribly.

I do have one question. How can one person have so many different diseases or diagnoses that may or may not be correct? I've never even had an MRI or any neurological tests. Just can't understand how they can tell me I have FM when it could be something else. I do feel it is autoimmune though and who knows, maybe my
brain is fried:P

lin

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443923 tn?1236201089
by swampelf, Mar 31, 2008
Oh how I can relate to your story. I have no friends with the exception of my son or my "Internet friends". My boyfriend and I just broke up because he can't handle the stress of post head trauma,brain tumor removal in frontal lobe and seizure disorder and severe depression. I to was raped at a young age, my son died when he was 2 and half. You are a fighter there are more things going on with me but I won't trouble you with that. I just wanted to tell you WAY TO GO GIRL!!! YOU ARE A SURVIVOR! Keep going I know how hard the days are, I have been there I am there. When days are hard and long get out a yellow orange crayon and write with it, it makes everything look brighter!!
Have  great day
Dorothy aka Swampelf

Avatar universal
by sempre18, Nov 19, 2008
Dear Lin, you are truly a courageous,strong spirit! I will keep praying for you and hope you will come into contact with people who can help you. I have been a PA for the past 20 years as well as a paramedic> I have had my own share of maladies, but not discussing them now, you are my focus. Regarding an MRI yes it should have been done, however you did mention open heart surgery and a number of fracturs, perhaps not done because of metal in your body? That is a standard contradiction. Have you ever visited a rheumatologist?Your symptoms spill into so many other organ systems, it is difficult to believe you do not have an autoimmune disease such as Rhematoid arthritis(you did mention treatment with gold injections,strictly done by rheumatologits as well as arthritis at a young age again consistent with rheumatoid arthritis), testing for rheumatoid can be a test of exclusion, and physical presentation,one does not need to have a _+rhematoid factor to have rheumatoid arthritis), other disease entities polymyalgia rheumatica,lupous(though I think your renal function would have deteriorated by now), fibromyalgia certainly would be another dx,again unfortunately a diagnosis of exclusion with many negative test results,, and I am certain there a host of others I am not aware about or have forgotten. Another thought,consider all the tick born infections,such as chronic Lyme, brucellosis etc.again diseases with multi organ involvement, and I do NOT want to burden you, but when you were with that evil man could you have an STD such as syphilis,gonorrhea,chlamydia?All these processes can cause arthritis as well as affect other organ systems. If you are ruling out an infectious disease process,I would recommend being evaluated by an Infectious Disease specialist. I am unfamiliar with medical management in the UK, do they have Pain Management Specialists?If your pain is not being managed by OTC products, please consider these compassionate physicians.  They may not be able to tell you what you have,but will do their best to manage your pain.  Some inspirational sites with brave souls as yourselves, Chronic Pain Society, American Pain Foundation. I hope I have notoverwhelmed you, but I wanted to give you justification of your symptoms, and encourage you to possibly have a larger workup.   Blessings to you and yours.Angela

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