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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

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Community Voices

A thought

<p>A thought</p>
3 people are talking about this
Community Voices

Guilt and Shame

<p>Guilt and Shame</p>
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Community Voices

Quick Motivational Story (about how your reaction to a situation can sometimes matter more than the situation itself)

I feel like I need to preface this by restating the word, "sometimes." I am not referring to trauma situations or major events. Just wanted to be uplifting for a moment! 😊

Once upon a time a daughter complained to her father that her life was miserable and that she didn’t know how she was going to make it. She was tired of fighting and struggling all the time. It seemed just as one problem was solved, another one soon followed.

Her father, a chef, took her to the kitchen. He filled three pots with water and placed each on a high fire. Once the three pots began to boil, he placed potatoes in one pot, eggs in the second pot, and ground coffee beans in the third pot.

He then let them sit and boil, without saying a word to his daughter. The daughter, moaned and impatiently waited, wondering what he was doing.

After twenty minutes he turned off the burners. He took the potatoes out of the pot and placed them in a bowl. He pulled the boiled eggs out and placed them in a bowl.

He then ladled the coffee out and placed it in a cup. Turning to her he asked, "Daughter, what do you see?"

"Potatoes, eggs, and coffee," she hastily replied.

"Look closer," he said, "and touch the potatoes." She did and noted that they were soft. He then asked her to take an egg and break it. After pulling off the shell, she observed the hard-boiled egg. Finally, he asked her to sip the coffee. Its rich aroma brought a smile to her face.

" Father, what does this mean?" she asked.

He then explained that the potatoes, the eggs and coffee beans had each faced the same adversity: the boiling water.

However, each one reacted differently.

The potato went in strong, hard, and unrelenting, but in boiling water, it became soft and weak.

The egg was fragile, with the thin outer shell protecting its liquid interior until it was put in the boiling water. Then the inside of the egg became hard.

However, the ground coffee beans were unique. After they were exposed to the boiling water, they changed the water and created something new.

"Which are you," he asked his daughter. "When adversity knocks on your door, how do you respond? Are you a potato, an egg, or a coffee bean?"
--------------------

#Motivation #ChronicIllness #Disability #PTSD #EatingDisorders #Anxiety
#MultipleDisabilities #Motivation #DegenerativeDiscDisease
#BipolarDepression

15 people are talking about this
Community Voices

I'm in my 30s but Ive had chronic back pain since I was 15 due to deteriorating disc disease, later a schwannoma( a very rare type of tumor) on my sacrum therefore causing me to have to get a sacrectomy. Which led to nerve damage, compounding other disorders I'm battling, like bipolar (2), anxiety, and an eating disorder.

I just found out today that I have a tumor on my uterus and they are not positive yet if it is malignant or benign. However, it seems that even if it's benign I'll be looking at a hysterectomy which is going to greatly affect my moods and mood disorders. Not to mention the sadness that comes with the knowing that I will never be able to have children "naturally" (obviously adobtion is always an option still).

This is just a lot to deal with right now and I feel like giving up. I feel like my body keeps failing me at every turn, no matter what I try to do. If anybody has words of encouragement or words of wisdom I could definitely use it right now.

11 people are talking about this
Community Voices
Community Voices

Forgive me for thinking this I do not mean it in an ill intent way but, being part of the chronic illness and disability community myself, is anyone else thinking that those now coming forward with the long term physical anf mental effects of covid19 and how they can't get back to the 'norm'... Is that not us, from beginning to never ending... Us?! Is this a positive thing in that it may bring more awareness and compassion to us from the wider community and medical forces? What's your thoughts please? Thank you. #COVID19 #coronovirus #ChronicIllness #MultipleDisabilities #Fibromyalgia #MentalHealth #FunctionalNeurologicalDisorder #PTSD #Depression #Anxiety #chronic

9 people are talking about this
Community Voices
B

Ugh

<p>Ugh</p>
Community Voices

Groups and Blog for People with #MultipleDisabilities

If you have multiple disabilities, check out my blog at https://lifewithmultipledisabilities.home.blog. Please follow my blog and like my Facebook page shown in the footer while you're there. I just started the blog, so it doesn't have much content yet, but I plan to talk about things I find that might help anyone with multiple disabilities and maybe have guest posts featuring other people with multiple disabilities. Click the "Available Groups" link to find online support and advocacy groups for people with multiple disabilities. Please also share this wherever you can.
#MultipleDisabilities
#Disability
#Disabilities
#ChronicIllness
#Autism
#Blindness
#InvisibleIllness
#InvisibleDisability