multiple disabilities

Join the Conversation on
multiple disabilities
1.2K people
0 stories
32 posts
Note: The hashtags you follow are publicly viewable on your profile; you can change this at any time.
  • Explore Our Newsletters
  • What's New in multiple disabilities
    All
    Stories
    Posts
    Videos
    Latest
    Trending
    Post

    Feeling down and depresses

    I am feeling somewhat down and depressed plus anxious. I joined The Mighty a few days ago and I'm just now feeling more comfortable telling my story. In 2006 i was diagnosed with Leukocytoclastic vasculitis. I had purpura all over both legs and it was very painful. It took a few months but I recovered and was relatively healthy for several years. Then as soon as I hit 40 it was like my health fell off a cliff. I was extremely tired all the time, depressed, and had night sweats. My doctor repeatedly checked my hormone and thyroid levels but they kept coming back "normal". Then I went to an ENT to get my ears cleaned. During the exam he felt my throat and said my thyroid was enlarged. I had an ultrasound and my thyroid levels checked, again. Finally I was out of range and I started synthroid. I noticed over the next few months my symptoms got worse and my neck was getting bigger. I had another ultrasound and talked my doctor into increasing my dose. The ultrasound showed I had nodules on my thyroid so he sent me to a pathologist who I well known around me for only testing the thyroid. I had a fine needle biopsy which came back benign. However, he said he could tell by looking at my thyroid I had hashimotos and sent a note to my doctor to test my TPO. It came back way, way out of range at over 800. My doctor said I had hashimotos in the past. By this point though I had been doing my own research and new that wasn't correct. Plus I went to an endocrinologist who was concerned I not only had hashimotos but graves disease too given how large my thyroid was. The graves test came back inconclusive. Meanwhile, I was on a hormone rollercoaster plus I developed shingles. I wound up in the hospital a few times and was taken seriously once till shift change where the new doctor brushed me off and sent me home. My primary care doctor was not happy the hospital brushed me off because I had chest pain. I saw a cardiologist a few times, was taken off synthroid then back on because my thyroid levels were all over the place, then after about 6 months everything calmed down and I was stable. I ended up changing primary care doctors since I couldn't get the old doctor to believe I had hashimotos plus he wouldn't check my iron levels. The new doctor checked my iron at my first appointment and found my ferritin level was very low but never tried to figure out why. Fast forward a couple of years and I start having severe pelvic pain. After seeing 6 doctors in the span of 2 months I finally get diagnosed with adenomyosis and fibroids. Nothing was helping with the pain and I had a total hysterectomy only keeping my ovaries. I woke up from surgery and the pain I had been in daily for several months was gone. Then about 7 months later the thyroid pathologist told me my thyroid was getting so enlarged I should see a surgeon about getting it removed. The same week I severely sprained my ankle and lost my insurance. Two months later with new insurance and still dealing with the sprained ankle I went to a pain management specialist and he sent me the physical therapy. By this point it was December so the holidays interfered with starting therapy and my Achilles tendon quit working and I was on crutches. Meanwhile, I couldn't work because I worked in catering and had a heck of a time getting on disability. I ended up having to quit my 2nd job because I just couldn't walk and be on my feet as long as that job required. Over the next 6 months I faithfully went to therapy and doctor appointments. I wound up in a walking cast at one point, sprained my ankle again, and had the big toe on the same foot sprained after someone walked right into me and stepped very hard on my foot. This caused me to go on workers compensation because it happened at work. Meanwhile at the same time my landlord decided he didn't want to renew my lease so I had to fight him in court and look for a new apartment. Oh and my insurance decided I had enough physical therapy so they cut me off. This brings us to January 2020. My whole family got sick in January with what we now know was covid, we didn't then. While I was still recovering we moved. I was able to return the physical therapy for a brief period till lockdown in March. I had a few virtual appointments then I was discharged about a month later. In September I went to a new endocrinologist and she looked at my records, ordered a new ultrasound. She confirmed my thyroid was way to large to even figure out what was thyroid tissue and what was nodules. She sent me to a surgeon who immediately scheduled me for surgery for a total thyroidectomy. I recovered from that, my anxiety spiraled way out of control and my husband took me to the emergency room one day. That got me into the counseling and with a psychiatrist right away and I'm on medication. With my anxiety getting under control of course something else had to start. In October I started having what I think are vasculitis flares. I tell my doctor who prescribed gabapentin and also started me on a statin due to high cholesterol because genetics. I am allergic to dairy, have gluten intolerance and overall already eat fairly healthy. So I started both new medications and immediately break out in hives over Thanksgiving. I stop both new medications and the hives don't go away. So after 2 rounds of prednisone they finally go away. The doctor wanted to wait a few months before trying anything new again. Meanwhile, the pain my legs gets worse but mostly tolerable. Then one day in February I'm doing normal housework and halfway through the day I am in so much pain I can't walk. I'm laid up in bed for a week. I make an appointment with a rheumatologist who I saw last week. He was really thorough, nice, and clearly explained his thoughts. He doesn't think it's the vasculitis flaring up and runs A LOT of tests, 12 vials of blood and a cup of urine. He briefly mentioned fibromyalgia. When I Google fibromyalgia I do check a lot of boxes for it. He said expected all the test results to come back negative but they didn't. I did what I know you're not suppose to do but I Googled the test results that came back out of range and the only things I can speculate is maybe I do have fibromyalgia, the vasculitis is flaring, and I may have a mild case of a hereditary blood disorder that is in my family, my dad had it and several cousins have it. It's spherocytosis. The only reason I speculate on the fibromyalgia is the soles on my feet really hurt and that does not go with vasculitis. I'm currently learning that I can't push myself or I over do it and wind up in a lot of pain. My feet constantly throb. I am starting to pace myself. I see the rheumatologist the first week of May to go over the test results. So that's my story, sorry it's long.

    #Anxiety #hashimotos #Hypothyroid #Adenomyosis #Hysterectomy #HighCholesterol #Undiagnosed #Fibromyalgia #LeukocytoclasticVasculitis #ChronicPain #MultipleDisabilities #Spherocytosis #ChronicPain

    Post
    See full photo

    Guilt and Shame

    The thing about having disabilities is that they impact the lives of those we love the most. In some cases, almost as much as it impacts the individual with disabilities. In some cases, more, albeit differently.
    There are unpaid relative caregivers whose lives are forever changed and impacted. Their qualities of lives are not as good as they were before they became caregivers, even if they’d never acknowledge or admit it to the individual they care for. Those phenomenal people are whom I refer to below.
    There are spouses/partners whose lives have changed, some negative changes and some positive, but changed beyond their own control and/or choices. No one chooses to have their loved ones become disabled or differently abled or chronically ill.
    Children often take on the role of caregivers to their parent. The child has zero control of their own lives and yet are found responsible for cooking, cleaning, caring for siblings, etc. The child looses out on a lot to do so.
    Do we, as individuals with disabilities want these things to happen? No. This leads us to experience extreme guilt. And shame. So much so that we more often than not find ourselves facing great depths of depression. We hate replying on our loved ones. We abhor needing others for things that we were formerly capable of accomplishing independently. We hate that we HAVE NO CONTROL. We suffer internally so as to not burden our loved ones even more. This is of course, just the tip of the iceberg so to speak.
    When I begin to feel overwhelmed with my own feelings of guilt, shame, and depression, I remind myself to do something extra for my caregiver. I will show my appreciation by cooking a special meal, baking a favorite dessert, or, since my caregiver is my partner, wear something “romantic” to bed. These are just a few examples of course. By showing my appreciation I lessen my feelings of guilt and of viewing myself and my needs as a burden to others.
    The shame I feel for having md’s/illnesses stems from my inability to do everything I feel like I have to do, such as, household cleaning, home repairs, or even shaving my legs. Some days I just shut myself in my bedroom and cry. Silently. And sleep. And cry and sleep some more. Then I feel ashamed for doing that. I’ll then do things I shouldn’t do because it causes my condition to worsen, to attempt to make up for my “failings” on the days when I slept and cried. It’s a vicious cycle.
    Shame is a strange emotion. Why do we, individuals with disabilities and/or chronic illnesses (I myself have both), feel shame for things we have so little control over? How do we move beyond it? What do YOU do to handle your guilt, shame, depression, and/or anxiety? Let’s share our tips and tricks with each other! What do you do to show your appreciation to your caregiver(s)? What do you feel shame and/or guilt about? #Depression #Disabled #Disabilities #Anxiety #Shame #Caregivers #relativecaregiver #MentalHealth #Guilt #MultipleDisabilities