Needing some support. Please. Sorry it's so long

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Regular Member

Date Joined Mar 2014
Total Posts : 156
   Posted 3/15/2014 10:15 PM (GMT -6)   
Hi everyone, a little about me, I am 24 years old, will be 25 in May. I have a lot wrong with me. I was born with a heart condition and was considered a miracle baby as I wasn't suppose to make it. I've had 3 heart surgeries and am scheduled to have more. Waiting on ucsf to approve the referral. I have asthma and a severe t9 compression fracture that my dr said my only option is surgery. I was diagnosed with hypothyrodism 5 years ago. I thought nothing of it though, I felt fine except always being tired, but I have always battled excessive tiredness. I lost my ssi along with my medi-cal around that time and couldn't continue my medication, but I noticed that there would be days when my medication made me feel so much worse. I have had a few thyroid test done resulting in fluctuating levels. My endocrinologist and primary care dr's say my last lab results are puzzling because I have my tsh too high or too low, my t3 normal and t4 too high or too low (the opposit of my tsh levels). For the last year I have been feeling so miserable. Hot, cold, sweating through my clothes while having chills. So tired I fall asleep while reading. There's days I am so weak I don't have the strength to sit up. There are times I am bedridden for a week at a time, do you have any idea how boring that is. (That's the least of my worries) My endocrinologist has diagnosed me with Hashimotos disease, an auto immune disease, yet he wont treat it, so I have to continue feeling super ill and keep gaining weight. My husband keeps telling me to excersise, I keep telling him I feel to sick! Whenever I try and push through the pain and symptoms to do housework I end up passing out. My esaphogus is swollen and can't take my medications or eat without choking and stuff getting stuck in the middle of my throat so badly I have to cough it back up. My endocrinologist said he thinks I also have Lupus and/or scleroderma, both auto immune diseases. My joints(hips, knees and knuckles) are in so much pain and are swollen, it's crippling me so much that my endo has sent a referral to a rhuematologist and said it's an emergency situation, wanted to get me in that day but they had to schedule me in for early Monday morning. All the doctors and specialist I have been seeing keep telling me they see why I am in so much pain and that I need to be on strong pain medications, yet none of them want to prescribe them to me thanks to the DEA! They keep sending me somewhere else to get pain medications. I have some hope the rheumatologist might halp me out from the reviews I have read about him and message boards with people who have painful joints. My primary has me on tramadol, nucynta and lyrica for pain but even when I take all 3 medications on top of ibuprophen, tylenol and/or asprin it doesn't even touch my pain. My primary dr keeps putting me on anti depressants to help with anger and quit smoking, I told him it will make me slip into a depression, give me thoughts of self harm and or suicidal thooughts, but he didn't listen. I've been diagnosed every mental disorder out there, then to find out I am schizophrenic probably thanks to Tracey, my biological mom who did speed and every other drug out there while pregnant with me. Growing up my foster mom who I was with from baby-15 years old passed away from cancer, which I took care of I even had to help her in the bathroom and wipe her clean her wounds etc. When she passed away my grandma who was abusive sent me away. After being put into group homes and foster care I was drugged up on several anti depressants resulting in the several and I mean several scars all over my arm and the deep scar on my leg. Once I stopped taking them I eventually stopped hurting myself. I haven't even thought of hurting myself or suicidal thoughts for a few years but ever since this last anti depressant I was put on I have been having those thoughts again. I stopped taking the medication but am still depressed and have moments of "what's the point in living, these diseases are going to kill me in ten years anyways, I'm going to live the last bit of years miserable, in and out of hospitals, undergoing all these surgeries." I have been doing a lot of researching and have found out that Lupus can/will start attacking your organs like the heart, lungs, brain and blood. I already have a bad heart and bad lungs. My blood is thick too. I was hospitalized last summer from a mass on my kidneys. I get sick all the time, prone to infections have had pnuemonia twice, once when I was a baby and another a couple years ago where it was two types of pnuemonia in three different spots. I thought I was going to die, I even asked the nurses if I was about to die. I have no appetite from being depressed and because I keep gaining weight, I have always been a twig, weighing 85-95 pounds ages 16-18. I get so starving that I have to force myself to eat. I have learned that lupus is hereditary and remembered that my biological brother also suffers from Lupus. I know I'm just going on and on and rambling, I just feel so depressed, so discouraged, so alone and so scared. I keep crying uncontrollably. Yesterday I was so upset about my appointment, the fact I have hashimotos but my endocrinologist wont treat it, all the pain I have that my endo said he was going to give me something for relief and then changed his mind because I said I would have to ask my ride if she is willing to take me to the rheumatologist that day. (I can't drive due to siezures, infact 3 or 4 years ago I was in a bad accident, was brain dead put on life support and a ventilator and they sent the cops to my house to inform my family that I was in a bad accident and am not expected to make it through this, told them they may want to go say their goodbyes to me while they had the chance. We suspect I had a seizure, lost my liscense actually got it suspendid. So I have to have my husband take me on his days off and my mother in law take me to the appointments that are not on his days off, man do I feel like such a burrden) The endocrinologist yelled at me and said if I was serious about getting better I would find a way to get there. I don't live in that city for one and two I live in the country, so far in the middle of no where that there aren't even any buses near me and no stores either, it's a good 10 miles to the nearest city. I was devastated when I was told that I probably have Lupus and/or scleroderma, especially after reading up on everything and realizing Lupus runs in my family as well as matches the symptoms I have. The fact that these diseases will eventually attack my heart and lungs, kidneys brain and blood I really started freaking out then. Especially since my brain has been slipping, my memory is so bad that my husband will talk about something we did that week and I'll have no recollection of it. I completely forget where I put something that I just had in my hands. I am so light headed and just not all there at all. In fact I've had to re read this over and over and fix mistakes of not putting the right words in or forgetting to put the word "the" in etc. I have to type with my index fingers because the other fingers are too damaged and painful. My hips are starting to really hurt along with my back. I've had this same migrane for 4 days. Also sorry for all the miss spelled words, 1) I only have a 9th grade enducation because of being bounced around in foster care halfway through sophmore year I was put in one of those secure group homes, I think a level 12 and had to go to the school on grounds, which was giving us 3rd grade material to learn from. I had to drop out in the beginning of senior year because I got booted out of the system at 18 (I fought to be taken out at 18, they wanted to keep me until I was 25) and had to focus on shelter and a job. My spelling never use to be this bad until my brain has gotten so bad. I end up forgetting what I was saying halfway through the sentence. Anyways, just feel I need to vent, my husband is one of those keep all thoughts and feelings bottled up and doesn't want to hear about my sadness infact when I told him how the endo appointment went I started crying and he with an attitude said why are you crying I said because I have all this going on and etc and he says "So, that;s just how it is, deal with it" I have few people in my life, I have my uncle from my foster moms family and my brother from that family too. My grandma and I have re connected a little from that family too but I haven't told her about any of this because she's in her mid 90's and I don't want to worry her. My biological sister and I just started talking again so I have her to talk to and 1 really good friend who has been trying to be there for me. She came and picked me up from the emergency room the other night because I thought I was having another inferior infarction. But I am just so...I don't know, hopeless, after my appointment yesterday and my husband went to work, he works graveyard, I shut the shades and turned the lights out, laid in bed listening to music and sulking all day. I don't even want to get out of bed anymore because I either feel too ill or am hurting too much or am to severely depressed. Well, that's pretty much my story on medical. ~ Jennie

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 3/15/2014 10:51 PM (GMT -6)   
((((((((Gentle hugs)))))))))

Wow! You've been through the mill.
That doctor shouldn't have yelled at you though. You hired him to treat you. You can fired him. That's terrible bedside manners! My primary takes care of my hypothyroidism.

It sounds like you need to talk with a therapist to help you with the depression.
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Regular Member

Date Joined Mar 2014
Total Posts : 156
   Posted 3/15/2014 11:19 PM (GMT -6)   
Yeah my mother in law said he shouldn't have yelled at me. I would like to fire him but he's the only one in my area. My husband wants me to go see a different one even if I have to drive a couple hours to get there. I do want to stick with him until I get these blood tests done and get the results. I have a barrium swallow test soon, it's to see what going on with my esaphogus. I am having blood tests for another tsh, t3 and t4.thyroglobulin antibodies, ESR, ANA, Rheumatoid factor, lupus panel, scleroderma antibody, anticentromere antibody and anti-scl-70 antibodies. I would really like to know what all of these results are going to be. Well my depression was fine, despite all my medical problems, then when my dr put me on welbutrin I slipped into a pretty bad depression and can't pull myself out of this one yet. I've stopped taking the medication 4 or 5 days ago. With all of my medical stuff going on and my depression being triggered from that medication I think is the reason I can't get out of this depression.
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