I don't think I can do this.

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Jennie89
Regular Member


Date Joined Mar 2014
Total Posts : 156
   Posted 3/16/2014 4:52 AM (GMT -6)   
I'm going to try shortening my conditions, my other post has the whole information. Basically I have been really suffering for the past year. I have been out of insurance for 3-4 years. I have a heart condition, which I recently found out I am going to be having surgery on. I have a severe t9 compression fracture that is also suppose to have surgery. I was diagnosed 5 years ago with hypothyroidism, but suspect I've had it longer than that because I have always had to fight excessive fatigue. I recently was diagnosed with Hashimoto's disease and was told my endocrinologist wasn't going to treat it. I have been feeling worse and worse. I sweat through my clothes right after putting them on while having horrible chills all over my body. I'm sensitive to heat and cold. Been gaining weight even though I have no appetite and don't eat. My hairs been falling out everywhere, my vision and hearing are going. I feel so weak there are days I literally don't have the strength to sit up. I have been ending up bed ridden for days at a time, can't even sit up those days because I feel so miserable. I'm constantly light headed, memory is gone, forget what I'm saying mid sentence. I have pain all over my body, my muscles and joints hurt so much it's crippling, all the dr's & specialists say I should be on strong pain meds but no one will prescribe them to me. My esaphogus is so swollen food and medication always get stuck and sometimes I have to cough it back up. My endocrinologist said he thinks I have lupus and/or scleroderma. Lupus is hereditary and my brother also has lupus so my endo is probably right. I am constantly tired so much so that I dose off throughout the day while reading or watching tv. Whenever I try doing housework, even light housework I either collapse or pass out. My husband use to tell me to stop pushing myself, but now he's saying I need to keep up with laundry. He doesn't understand that my symptoms have gotten to the point where I can't even hang clothes up without getting super weak, shaky, sweat really badly, get chest pain that radiates to my arms and shoulders, labored breathing and come close to collapsing/passing out. That's what happened right now. I was struggling to keep my eyes open, then remembered I had laundry in the dryer, I wanted to make my husband happy with me so I put the clothes away and everything I described happened. I am in agonizing pain and still feel faint. I had to catch myself a few times because my legs just gave out. I broke down into tears, cried for a good 15 minutes, was just crumbled on the floor. All of this has gotten me so depressed, I am so tired of of feeling miserable, I want my life back. I use to have a dream of having a family, that's my biggest dream ever is to have my own kid, my cardiologist shot the question of kids down, said we need to fix my heart before even thinking about kids. I had a dream of getting a degree in psychology too. But now I don't have much hope for recovery. There's just too much wrong with me. I'm going to have to suffer my hashimotos symptoms forever. Chances are I do have lupus since it does run in my family. I just can't do this anymore. I keep getting sent here and there. I have tried staying positive but honestly, lately, I don't even feel like I want to keep going on....(Not saying I would act on these thoughts) I am starting to feel like, "what's the use? if these auto immune disorders start attacking my organs too then it's only a matter of time before I die. During the time I'm still here I'm going to be feeling miserable & in too much pain." Last summer I was hospitalized for a mass on my kidney. I've had pnuemonia twice. I always get sick, I've always had a weak poor immune system. My husband is so sick of hearing me complain. Whenever I start crying about it he tells me "deal with it". I have a few close people to talk to but I still feel alone. I've been so depressed about this that I have just wanted to be in my room by myself, which isn't like me, I hate being by myself. I sit in the dark and listen to music. I have really gotten discourage. With how bad my symptoms have gotten I truly do feel I'm headed to my death bed real soon. I am only 24! I told my uncle I'm scare of dieing, he said it'll be great because I'll get to be with God and my parents, but I am just not ready for that, I wanted to live life first. But now that I have gotten so ill and no one wants to treat me I'm starting to feel like I don't want to live life, only because my life now is all about dr's appointments, specialists, surgeries, feeling super ill and tons and tons of pain with no relief. :'(

nvrthesame98
Forum Moderator


Date Joined Jun 2008
Total Posts : 6706
   Posted 3/16/2014 6:58 AM (GMT -6)   
Hi Jennie,Im from the Chronic pain forum and dont have lupus but certainly understand dealing with the overwhelming feeling of having too much on my plate at a time. I say your post and just wanted to say hi and know there are people here that know and understand your feelings.

This forum is a great and wonderful place to gain knowledge and advice with some awesome folks to support you as you struggle to find the correct diagnosis and treatment for whats going on.

I wish you healing thoughts and peace and please continue to post here for help with your battle for better health and pain relief.
Vickie
CHRONIC PAIN MODERATOR

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1650
   Posted 3/16/2014 9:01 AM (GMT -6)   
Hi Jennie89. I'm going to try to make this brief.
1) If you are having chest pain, or shortness of breath call 911. If you must wait until you're having pain and your hubby isn't home, so be it. Tell the paramedics you don't have insurance. With your history of heart disease the ER should admit you and give you great care.
2) If you don't have insurance apply for the Affordable Care Act -Obama Care. If you don't make enough $ it will direct you to Medicaid.
3) It's Extremely important that you see a good rheumatologist. He/she will treat your Hashimoto's (bring records from docs who think you have it), test for other autoimmune diseases and treat you with medication that ultimately will give you energy and strength, reduce the pain, stop your hair from falling out, and make you feel like a new woman.
4) Immediately get on an antidepressant and antianxiety medication. You can get this from your primary care or a psychiatrist. I've been seeing my psychiatrist for over 10 years. Many (if not most) of us are on these meds.
Those of us with lupus have memory problems all the time. Sometimes it's quite severe. It's called lupus fog and after a while we all learn to laugh about it.

I hope that after you are properly diagnosed, are taking those antidepressant and antianxiety meds, and have a better outlook your husband will stop being an ***hole.

That's the skinny. There is treatment for your problems, so don't give up hope. Love, Butterflake
SLE '05, Sjogrens, fibro, Raynaud's, major depressive disorder, CNS problems, diastolic heart dysfunction, GERD, 1st stage kidney disease. Many meds: better living through chemistry

Donna
Sjogren's Moderator

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 3/16/2014 9:21 AM (GMT -6)   
Hi Jennie, I second wholeheartedly what Butterflake has suggested and would like to add that you could also get immediate treatment for your depression from an er setting depending what is available to your area. I'm in Canada and some of our hospitals have mental health wards where if you are having suicidal thoughts you can get help on the spot. Perhaps some of our US posters would know more about what is available to you.

I also agree that it sounds as though your husband is being an a-hole!

Please, please pleeeeease advocate on your own behalf and stick up for yourself. Whether it is your husband, the doctor who yelled at you, some jerk who took your place in line at the grocery store... you deserve to be treated with respect. Do not take anything less from a n y b o d y.

I don't suggest you tell them to get stuffed, just politely say that you do not appreciate their "tone", way of speaking to you or any words/actions you may not like. Empower yourself. You need to, we are the only ones who have the power to take care of ourselves and know what we need or do not need. Especially with these obstacles concerning our health.

I'm glad you are here and reaching out. Sending you gentle hugs and support,

Joie
UCTD , livedo reticularis, Raynauds, cold urticaria, endometriosis, bursitis, arthritis, Sjorgens, anemia, leukocytosis, vasculitis, pleurisy, asthma and all that fun stuff!

Plaquenil, celebrex, advair, flovent, dovobet, vitamin A,B,C,D,E fghijklmnop ;)

Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss

Jennie89
Regular Member


Date Joined Mar 2014
Total Posts : 156
   Posted 3/16/2014 5:56 PM (GMT -6)   
Vickie, Thank you for stopping in and saying hi, I really appreciate that. Chronic pain forum, I'll have to check that out. You were saying to continue to post here, I found this site yesterday and I just have so much to say, so much to get off my chest or vent about, so many questions, I put a few posts up and then took some down because I didn't want to be putting too many posts up, is it ok to put several posts up?
Butterflake, I have gone to the emergency room several times about chest pain. Most of the time when I had no insurance and once since I've gotten insurance. The e.r dr said he was considering admitting me but decided against it since I have a primary care and cardiologist. My cardiologist is already trying to get me set up with ucsf for my surgeries. I have an ultra sound of the heart next friday to find out more. I'm not sure if I've had a mini heart attack or not. My ekg popped up with inferior infarction but the e.r dr didn't do anything about it, didn't even tell me about it, I wouldn't have found out unless I didn't ask for my ekg results. The last time I went in I asked why they didn't do anything and they said because the don't go by what the machines say, so did my cardiologist but he said that I have a right bundle branch block and some other block, he only knew about those because of the ekg results. (I have other records stating I have those too but he had no way of knowing that.) I do have insurance, finally, lol. That's how I've been able to go to all these specialist and finally figure out what's wrong, I just wasn't expecting it to be so overwhelming. My coverage is pretty good too, I don't have any co pays either, besides for prescriptions. Unfortunately it resets in April and I'll have to pay off the deductable again before getting help from the insurance. Anti depressants aren't really an option for me. I was just taken off of them in fact, my own choice. I wasn't depressed but my dr (primary) kept pushing different anti depressants on me for anger, every one of them made it worse and made me depressed. When I was put on them as a teenager, it made me so angry and crazy resulting in scars all over my arm. Anti depressants have helped me one time but it also made me so out of it that I would do weird things and not know I did it, they would make me sleep walk and do weird things in my sleep, I accidentally overdosed on my trazadone (I only take it when I can't get to sleep.) when on anti depressants. I am already on anti anxiety meds, my cardiologist put me on a low dose of Xanax for anger and anxiety. I have a rheumatology apt tomorrow morning. I didn't know they would treat my Hashi's. I was reading online that a lot of their rheumatologists told them they don't treat them, they only diagnose.
Joie, I would like to live in Canada, lol, they are great about health care and treating people. I've went to the e.r for depression when I was living in L.A. they treated me for my wounds and had a psychi person come to evaluate me, I was released on terms that I would seek mental health and do this program but then I moved back up north. I plan on going to a psychiatrist though, not for antidepressants though since those just aren't really an option for me. I also have plans of seeing a psychologist/therapist as I have a lot of things I need to talk about. I've noticed all of your diagnosis's on your signature part, I guess I'm not the only one with several different diseases.
To you all: Thank you so much for your responses, support, hugs and information. I really appreciate them. As for my husband, I understand that he is tired of hearing me complain. I've gotten a little emotional support from him but he's just not an emotional guy. He use to be more understanding but I don't know anymore, sometimes he's understanding sometimes he's not. I don't think he's quite understanding just how bad I feel, never really has, before I was diagnosed with hypothyroidism I always felt horrible (well still do) and would say somethings wrong with me, he would tell me "I'm taking too many medication for pain" then I got the diagnosis and was like "see, told you something wasn't right" I would like to continue on with what I am saying and I'll have more to add in a little while, need to take care of some things. Thank you all so very much <3 Jennie

Evanescent Eden
Regular Member


Date Joined Feb 2014
Total Posts : 132
   Posted 3/16/2014 10:45 PM (GMT -6)   
Jennie,

I'm not diagnosed with lupus-- I'm mostly from the Fibromyalgia forum, while also floating about to many others because of many undiagnosed/ unexplained problems not associated with the Fibro, etc.

I read this though because "I don't think I can do this" caught my eye. I can't tell you how I do relate to many things you've said here... I know what it's like to have WAY too much on your plate, undiagnosed conditions on top of many OTHER conditions, plus a complete lack of support from those around you. This forum helps with that~ everyone is VERY supportive!

I hate to say it but I don't like the sounds of how your husband is acting towards this! Just briefly, I will tell you I got married at age 21, he left me at age 22 after emotionally abusing me and putting me down always-- he got so overwhelmed with all of my ailments, he would act downright mean and cold! Your husband shrugging off your issues and pain is not helping you any. I'm sorry but i just had to point that out-- I'm sure you already know it. But I sure hope that if it continues... you may want to do something about it. Those with chronic illness NEED support and understanding above all else!!!

Anyway, I am only 26 now. And I, too, often feel like I can't go on. I have to live at home with my dad right now and the lack of support in this house too just kills me! Makes everything so much worse to the point where a lot of days between the lack of support/ the ignorance I gotta deal with, the chronic pain, lack of insurance and medical help, I also just feel like giving up! Or if I don't give up, I'm afraid of dying at a young age anyway. (Ugh, my own mother AND HER mother both died at young ages too-- the women in my family don't live long-- which makes my suspicions worse)shakehead

I, too, always dreamed of having a baby. I have no children. Too many health problems (including gynecological*), financial problems, etc. I'm starting to feel like it may never happen~ but it's always been my BIGGEST dream in life. I also have dreams of getting a Master's degree (psychology is one of my passions too-- but not sure yet what I'm going to pursue), but even community college has proved to be too much for me. I keep hanging in somehow-- but it's getting harder and harder. I know how it is when everything-- every dream and goal-- seems sooo far away because of being chronically-ill!

YOU ARE NOT ALONE!!

And I do agree-- regardless of whether or not you have insurance, *********DO NOT IGNORE CHEST PAINS/ SHORTNESS OF BREATH!*********** With your history, you should be going to the ER, just in case! Please take care of yourself first and foremost!

Love,
Eden :-)
DX: Fibro, IBS, GERD, Daily headache, Migraine, Severe allergies, Bladder diverticulum, Mild kidney damage, Recurrent infections, Sinusitis. Bipolar Disorder, Borderline Personality, OCD / Dermatillomania. In the past: Gestational Trophoblastic Disease. + Undiagnosed issues; searching for the answers.

"You can't be brave if you've only had wonderful things happen to you" Mary Tyler Moore

Jennie89
Regular Member


Date Joined Mar 2014
Total Posts : 156
   Posted 3/17/2014 12:00 AM (GMT -6)   
Eden, thank you so much for your comment. It made me a little teary eyed, in a good way, lol. I like that both of us have a passion to have a baby and a passion for psychology. My life is so miserable right now. It really is nice to talk to someone about it, especially someone who is having similar issues as I am. No one really understands what it's like to be ill unless they are ill themselves. My husbands family all are relatively healthy and don't understand illnesses. I totally wasn't expecting to be told by my endocrinologist that he strongly feels I have Lupus and/or scleroderma on top of my hashimotos. I knew I was in bad shape by the way I feel, the fact my symptoms get worse, more symptoms show up, my pain level has gotten higher and pain has been spreading. I couldn't believe it yesterday when I nearly passed out just from picking a few things up off the ground & hanging up a couple of clothes. I can hardly stay awake anymore too. Earlier, just 2 hours after I woke up I couldn't stay awake, my husband woke me up a few times, he said I should take a nap. I end up napping throughout the day and all on accident.
Yeah my husband is something else alright, lol. Don't get me wrong, I love him to pieces, I feel comfortable with him, he knows everything about me even my deepest darkest secrets. Plus he has been the only one to put up with my medical issues and doesn't try leaving me over them. I don't know how many times people have broken up with me because my psychy problems were too much for them to handle. Not my husband though, a couple of years ago I really went off the deep end, I got into some bad stuff I had no business getting into that increased my psychy symptoms, I was such a handful during that time and as annoyed as he was, he stayed with me. I had this one boyfriend who was 35 or 36 I can't remember, who saw me having a seizure and did nothing about it, just took one look at me and went on with what he was doing. It was the kind of seizure where I was concience during so I knew he saw me and had done nothing. I had even warned him that I got seizures. Here's the best part (sarcasm) when I snapped out of it and the seizure was over he told me to go walk to the gas station to buy him a pack of cigarettes. I couldn't believe my ears. When I would struggle with self harm, usually brought on by how mean he was to me, he would tell me to go ahead and do it, in fact he would egg me on or encourage me to do it. So I kind of feel fortunate to have my husband. It really is frusterating that he's not as understanding as he use to be though. When I told him what happened after just putting a few things away and how I kept working because I wanted to make him happy, he told me I should have stopped the first time I almost fell over & asked me why I didn't stop. I again told him that I wanted to do what he had asked me to do, he said that I'm not suppose to work past my limitations and I told him my limitations have gotten so tight that if I didn't push past my limitations I wouldn't be able to get anything done. He listened to my struggles, didn't say much though, he did say he was sorry I was hurting so much though. When the alarm went off today I sighed and said "I really don't want to get up today(or any day)" he says "all you have to do is get my cereal & lunch ready for work, I have to get up and go to work" I couldn't believe he said that, I'm sitting there thinking to myself "has he listened to any of the complaints I have" I told him " are you serious? Do you know how badly I would love to be able to go to work, to be healthy like you?" I feel like he acts as if my days are easy for me, what part of severe pain, weakness, missery, feeling ill, being ill and so depressed about it all that I've given up hope, that I feel like I'm kissing my dreams good bye, that I feel like I am going to die soon etc sounds easy? lol.

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1650
   Posted 3/17/2014 9:05 AM (GMT -6)   
Hi Jennie. I hope I get this out before your rheumy appointment. It's a good idea to list all your complaints, even if they sound insignificant to you because added together it might be important to your rheumy.

Also try to begin getting medical records from every doc and hospital you've seen and bring records that you think are important (all?) to your initial visits. Keeping records is also extremely important if you ever want to apply for disability.

I'm so glad you're going to see a shrink. Mine is terrific! There is a huge arsenal of meds out there and if you develop some nasty side effect you have someone to call right away. My psychiatrist also has nurse practitioners (NP) and psychologists in his practice. If I have problems I can get in quickly to see an NP.

Please let us know how your apt goes. I'm sending you all positive energy I can muster! Love, Butterflake
SLE '05, Sjogrens, fibro, Raynaud's, major depressive disorder, CNS problems, diastolic heart dysfunction, GERD, 1st stage kidney disease. Many meds: better living through chemistry

Donna
Sjogren's Moderator

Evanescent Eden
Regular Member


Date Joined Feb 2014
Total Posts : 132
   Posted 3/17/2014 5:50 PM (GMT -6)   
Jeeze, you guys must live in a better state than I do... I never had much luck with shrinks in the past either... unfortunately, I am diagnosed with Borderline Personality Disorder due to being abused as a child, and shrinks around here are very stigmatizing towards people with that disorder. I have been told that they would not help me before they even gave me a chance!

Yeah, shrinks... not my best friends. Have not seen one in like 4 or 5 yrs though now. I don't see anyone for my problems... Jennie, I can definitely relate to your psychy problems. I have been in that boat my whole life, but things have only worsened since I've had the physical pain too (and while living at home with my uncaring dad & brother).

I'm glad I could be of some help to you- just through relating to you and listening to you!

A lot of my problems are undiagnosed as of now too-- soo frustrating!

OMG you've had seizures in the past too? Do you know why? Was it because of the 'bad stuff' you did? Or because of an actual physical condition...

I hope you don't feel that you have to write all of that about you and husband just to "prove" to me that he's really not that bad... You don't have to prove yourself to anyone! I don't know him at all- or your relationship of course- I am not judging... just looking out for you... but it really just comes down to whether you are truly happy and safe. No worries.

I'm lucky to have a stable relationship finally (although I still go off the deep end at times too because of my mood swings and chronic pain)... we have been together for almost 2 yrs now, best friends before that, still best friends... and he's the ONLY one who supports me and my illnesses. he takes care of me. If I am really that bad and having a tough time walking (I've needed a wheelchair a few times now), he waits on me hand and foot. I feel awful about it- often times pathetic- I don't want it to be that way... but he offers to help me without me ever asking. He is incredibly sensitive and researches my illnesses all of the time, to try to find what he can do for me... how he can help, etc.

A BIG change from my exes! They were always horrible to me... many very emotionally-abusive. I'm very thankful for what I finally have.

I really know how you feel- truly- my symptoms always get worse too, more and more show up, etc., all along I am getting no help though or treatment. Working on insurance.

Most of all, I understand the baby bluesshakehead I am a nurturer to the bone... I would even like to adopt one day... but I don't know if I'd be seen as "stable" or "fit" enough to do that even. Although, god, I would be such a great mommy. I was born to be one!

So nice talking to you, Jennie! How are you today (whenever you happen to see this)?

Eden :-)
DX: Fibro, IBS, GERD, Daily headache, Migraine, Severe allergies, Bladder diverticulum, Mild kidney damage, Recurrent infections, Sinusitis. Bipolar Disorder, Borderline Personality, OCD / Dermatillomania. In the past: Gestational Trophoblastic Disease. + Undiagnosed issues; searching for the answers.

"You can't be brave if you've only had wonderful things happen to you" Mary Tyler Moore

Jennie89
Regular Member


Date Joined Mar 2014
Total Posts : 156
   Posted 3/18/2014 1:51 AM (GMT -6)   
Hi everyone, sorry I haven't responded all day, I have been gone doing medical stuff from 9am-5pm, then got my husbands lunch ready for work and fell asleep. The first chunck of this response is to all of you mostly just saying how my apt went. EDEN there is a special message for you at the end of how the appointment with. My appointment was frustrating. The rheumatologist wasn't much help today. He is doing more blood work on top of the endocrinologists blood work. Which I also took care of today. They took 11 vials of blood out of me today. 10ml. I asked the rheumatologist if he would help me with my pain like the endocrinologist told me he would, he said he doesn't do that. I said oh, the endocrinologist said you would, I explained how bad it is and he said ok well I can prescribe you Tramadol, I said oh no thank you my primary dr already gives me Tramadol, (which he would have known that if he read my chart) he said ok well how much are you on, I said 2 50mg tabs every 4-6 hours, 8 tabs a day. He says "Ok, I'm going to give you Tramadol and am changing your doses to only 4 pills a day" WHAT?! Is this guy serious? If 8 pills isn't strong enough to manage my pain what makes him think 4 will? I again politely tell him no I already get it prescribed by my primary. He said he can also give me a pain shot while I was in the office, I asked what it was (always ask what they want to give you before they give it to you) he said Tortal. I said ok in desperation for some relief but I wasn't convinced it was going to help much since my pain is in my spine & joints & Tortal is more to help muscle pain. When I strained my lower back muscles/threw it out a few weeks ago my primary gave me a shot of Tortal & it worked wonders but not so much this time. I asked him if he can at least help me with my excessive tiredness. He said no, he said that was out of his things he treats or something I said but fatigue is a symptom of what you treat and he said I'll have to go to my primary care dr to treat my symptoms. (Well what am I here for? what did I waste my time & money for at the endocrinologists? What is with these "specialists" only diagnosing things but not treating them?) I was so upset at the end of the appointment that I was tearing up before I even left the room. So fed up with having my chain pulled I immediately got on the phone with my primary dr, couldn't get an apt for tomorrow but they had a 2:30 cancel that day. Thank God for my understanding in laws, they agreed to take me to my primary. By the time I was done at the lab center it was 12:30 and my father in law wanted to head over to my primary dr, I told him my apts not until 2:30 he was hoping I could be seen early, lol. A half hour later wqe get to my primarys office, he was at lunch but another dr could see me instead, I asked if that would be stepping over boundaries though, they said no it was fine. Boy was I glad my father in law wanted to go early. I had so much luck with the other dr, I feel bad but I think I am going to switch over to her. She is more willing to treat my pain, she gave me 10/325 hydrocodone with 3 refills even. She didn't give me anything for the excessive tiredness though, she wanted to wait until all the tests results got back. She also wants to do a sleep study on me for sleep apnea. She really talked to me too, she asked about my childhood, asked if I had any idea as to why my spine is the way it is. I told her about all the different kinds of abuse I endured growing up, that I had to pick up my younger sister by 2 years up & into her chair as well as an adult male in his mid 20's up and into his chair at times too. We talked for a good while, at some of the things I said people have done to me she had a look on her face like it made her sick to her stomach, she was disgusted about what men have done to me as a child & when I was 18, she said I was a really strong woman, she said I have turned my life around. On top of the great experience I had with her she also said she would get my referrals to the pain specialist & spine surgeon today. She also said she thinks I have fibromyalgia and a degenerative tissue disease, I asked what she meant, she said like Lupus, she said Lupus would really make all of these symptoms make sense.

Now this message is for EDEN: I really like talking to you. :) As for shrinks, I haven't had good experiences with them at all. One of the first ones I saw was in 5th grade. My school pulled a few selected kids to do group therapy. I was one of those selected few, I guess because I was a foster kid & didn't fit in at all. The councelor said this is a safe place, what is said in here stays in here. Told us all to share, I didn't feel like it, I didn't even see what the point of being there was. He repeated to me that it was safe, no one's aloud to say anything that is said here and so I reluctantly shared, I don't remember what it was I shared but word got spread all over the school and I was even more rediculed for it than I already was. I refused to join in with their group therapy so they set me up with a one on one. The next bad experience was in 6th grade, the year my foster mother of 15 years passed away, I don't know if the councelor thought he was helping me by doing this or not but he informed my teachers and classmates, who informed the rest of the school, that my mother passed away and for everyone to be nice and supportive of me. I remember returning to school and everyone starring at me, eople pointing fingers at me, people whispering amungst themselves "shes the one whos mother passed away" I hated it, all the pity in their eyes, I didn't want to be the center of attention, I didn't like that everyone was starring at me, talking about me oh and lets not forget the students who would always make fun of me whisper and laugh amungst themselves. I ended up getting in a fight with someone for laughing that my mother passed away. The councelor had the nerve to tell me that just because my mom passed away doesn't mean I should resort to violence, I was so mad, I yelled at him for telling everyone about what happened, I told him it was my business and I didn't want anyone knowing. I also told him that I didn't resort to violence because my mom passed away, I resorted to violence because those kids were laughing that my mom passed away. He tried defending them! Another bad experience, a really really bad one. After my foster mom passed away, my foster grandma sent me away. My uncles told me it was because she was too old to care for me, even though I knew that was a lie because she kept my brother who was doing drugs and always cursing at her, she kept my sister in the wheelchair and her adult foster son in a wheelchair. The puzzling thing was that I helped out with them so much, I kept the housework up, went to school, took care of the kids & took care of my mom. She even told my mom several times in front of me that she was going to get rid of me as soon as she passed. Anyways though, I was shuffled around, kept running away from foster homes from being abused and group homes from always getting jumped. I was put on a level 12 group home. In level 12 we have school on grounds, see the therapists and psychiatrists on grounds too. Was overly medicated on anti depressants, so much so that those last couple years in the system are some what of a blur. Anyways the councelor/therapist left my file out on the community table, I don't think they did it on purpose but she really should have been more careful, some of the girls got a hold of it and shared all my personal stories of abuse and such with the rest of the 14 girls on our campus and spread the news to the other 4 houses with 6 girls in each. So yeah I have had horrible experience with therapists at least. I would like to see a psychiatrist again though, now that I'm an adult & I have the right to say no to too many anti depressants at once. Oh no, I just realized a shrink is more of a psychiatrist not councelor, so I just ranted and raved over myself lol. Sometimes I think I share just a tad bit too much. lol. about the seizures, you know I'm not sure what the main cause of them are. I think I'm just prone to them. Certain medications have given me seizures, if I don't get enough sleep or am under too much stress I'll get them, the bad stuff I did has caused them too but I had seizures before I got into the bad stuff. Wow, he sounds like a keeper! My guy is a good guy but wow your guy is like a great guy, lol. That's amazing he looks up your symptoms & diseases and ways to help you and such. Thats so cool that he waits on you hand and foot too. My husband will get up and get me things whne I'm feeling real crummy, but I wouldn't say he waits on me hand and foot. lol. Except when I had the pnuemonia (if I already said this sorry, bad bad bad memory) 2 different types, 3 different spots. I was suppose to be hospitalized for it but stubborn me said no I will go home and he took the best care of me. Wouldn't even let me get up unless it was to go to the bathroom or dr's apts. He even helped me to the bathroom because I was too weak and out of it to. Sat next to me the entire time to keep me company, watched whatever I wanted to watch, took me to the emergency room whenever I felt I needed to go. He was great. I know I don't have to tell you all this about him or about previous bad relationships to prove anything, I just didn't want you or anyone thinking he's not a good guy. Yep yep symptoms get worse, more come along, then more diagnosis's come along lol. Yeah me too, I've always been a nurture. When I was little I would stuff pillows under my shirt as if I were pregnant, walk around my house like that for a while then go to my room, close the door and come out with my baby doll in my arms walk around with it in my arms for days and then put her in a stroller and strolled around the house for days too. When I would go with my mom to the store, which was everytime she went as I literally was glued to her, I would bring my baby with me. I'd even put her in a seat belt, fold up her stroller and put it in the back to stroll her around the store with. I would even "feed" her when I would eat. I always had that baby doll with me. I think I named her "Molly" I would always love taking care of my little sister too. Took excellent care of my mom when she got her cancer. Spent every wakening moment by her side too. During the few months I was still at my grandmas house after she passed I would try and take care of my big brother too. I'd ask him all the time if he wanted me to make him his meals and just take over as the role of our mom, but that got on his nerves, he finally yelled at me to leave him alone, said I wasn't his mom. Oooops lol. At the group home I stayed at the longest I would always be there for this one girl, I'd give her emotional comfort and support and always made sure the other girls left her alone, made sure she ate healthy, cleaned her wounds, bought her things, she ended up calling me "mom". I would love to have 1 boy and 1 girl of my own and adopt 1 to save them from the horrors of foster care. Well, Eden, I just can't stay awake any longer, plus I've probably wrote waaaaayyyyy too much already, lol. Oh yeah to answer your last question, I'm doing ok today. A bit tired but only getting 2 hours of sleep could be playing part in that. I'm not too depressed today like I have been lately either. A bit nauseous from taking medication without eating, lol. My hips is still hurting really badly though. I'm going to lay down, take pressure off my hips probably take a little nap until my husband gets home at 5:30 am. Sending love your way <3 Jennie

bucket list
New Member


Date Joined Mar 2014
Total Posts : 1
   Posted 3/18/2014 5:24 PM (GMT -6)   
I have been there, I've been to the point of calling my wife into the room because I thought I was about to pass. You can't give up...You can do this. I miss my life too but the pain will end one day and you'll know you put up the good fight. Trust in the lord everyday and even more when you feel like giving up. I pray all the time and you are now in my prayers. You are stronger than you think, especially with God on your side! 

Jennie89
Regular Member


Date Joined Mar 2014
Total Posts : 156
   Posted 3/24/2014 1:09 AM (GMT -6)   
Bucket List, thank you so much for your encouraging words. I really appreciate it. I am sorry you have also felt like you were about to pass....it's a really really scary feeling. It's not nice that you have felt that way too, but it is nice to have someone else completely understand how I feel. I don't feel like people really understand just how bad I feel, how physically ill I am. I am just so terrified, I found out my dr is concerned that I have cancer, lymphoma....I finally get why some people say they can't say the word "cancer" My mom passed away of breast cancer that spread to her brain. It was a horrifying experience. My close friend died of liver cancer, I was in the room & saw him take his last breath. My birth mom passed away of liver cancer too. So you can imagine how terrified I am right now. I've been sick to my stomach. With how awful I feel, if the test comes back positive, I am surely not going to make it.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 3/24/2014 1:39 AM (GMT -6)   
Hang in there.
I've seen many people battle with cancer and win. You just have to not give up and fight whole-heartly. Once you give up then you have lost the war before you have even started.
Joy
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! :))

Jennie89
Regular Member


Date Joined Mar 2014
Total Posts : 156
   Posted 3/24/2014 5:00 AM (GMT -6)   
Thank you couchtater. I appreciate your kind words. I am trying to not give up but I just don't think I can do it. I'm not strong enough. I have become such a burden. My in laws have gotten annoyed with me and all my dr's apts. I feel like they aren't feeling as close to me as they use to, especially my father in law. I call them mom and dad his dad was touched in the begining but ever since I've had to go to all these dr's apts he's been distant. I'll say "dad" & he'll go "dad?" like in a tone of "why are you calling me dad?" :( I tried getting comfort from my sister. I told her that I have gotten to the point where sometimes I kind of don't want to wake up. I really needed her, but as usual, she didn't want to be there for me and just ignored my e mail. Even though I just spent the week with her and her husband was being an ass the whole time and I was there for her.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 3/24/2014 12:43 PM (GMT -6)   
Can you afford a caretaker to take you places? Some insurances will cover a caretaker. Maybe someone like care.com?
Joy
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! :))

Jennie89
Regular Member


Date Joined Mar 2014
Total Posts : 156
   Posted 3/27/2014 7:54 PM (GMT -6)   
Joy: I don't know if I can afford one or not. I was going to look into seeing if my insurance will cover it.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 3/27/2014 7:57 PM (GMT -6)   
Even a college kid with a car could take you to appointments.
Joy
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! :))

Jennie89
Regular Member


Date Joined Mar 2014
Total Posts : 156
   Posted 3/30/2014 10:50 PM (GMT -6)   
Yeah, I tried looking on craigslist for someone but didn't have any luck. I might put an ad up in search for one, but I don't know how much to pay the person. Do you have any ball park figures of how much it should be to take me to my appointments from time to time? Another thing about craigslist is there's a lot of scary, crazy people oon there and in the town I live in doies not have the best people in it. The crime rate around here is so high and were constantly hearing about people getting shot and killed just from taking a walk. There was a dead female body found in the canal down the street from my friends house and someone got shot and died on the adjacent street of another friend. It's just a really bad area so I have to be real careful with finding someone on craigslist around here to take me to my appointments. I came across one site that was charging $12 an hour for a caregiver & my husband said that is too much, we couldn't afford to pay that with all my medical bills. I don't know what I'm going to do. When my MIL took me to my heart ultra sound she was totally fine with it because I was in and out within an hour. I have an appointment tomorrow that she wants me to try to get out of. The appointment is to go over test results. She wants to see if they'll just tell me ovedr the phone, I really don't see that happening. She really doesn't want to go to this appointment because of the city it's in. She hates driving in that city.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 3/31/2014 1:12 AM (GMT -6)   
Yeah, I would be learly of craigslist myself in that situation.
$12 an hour is a little high. What about using a taxi? In the big city near me there is a medical taxi. They pick you up, leave you, and return when the appointment is through.
Joy
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! :))
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