Hemolytic Anemia

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Fighting against a lot

Psoriatic arthritis in my spine my hands and fingers my left wrist my left collar bone which is badly eroded my left hip two types of psoriasis guttate and plaque which appears on my chest my torso my legs raynauds phenomenon in my hands I do struggle to stay warm I have scoliosis on my spine which basically my spine does not run in is correct shape thus causing a left lumbar muscle imbalance which causes untold lower back pain I have Chiari malformation type1 and syrinxes one at C2 then one at C6/C7 which goes all the way down my thoracic spine to the top of my lumbar spine at C6/C7 I have a bilateral herniated disc which is pressing down on a nerve that runs through my (left hand side ) through my upper back through my left shoulder blade over my left shoulder down my arm all the way down to my fingertips because its bilateral even if use my right arm it can send the most breathtaking horrific stabbing burning nerve pain all the way from my neck to my fingers if the muscles in my neck tighten then releases nerve pain that is like a lightning bolt of nerve pain that shoots through the side of my left neck through the side of left skull behind my left ear through my left temple and behind my left eye I once had 17 of these in one day the first nearly through me off my feet I take meds for the pain but they sometimes work other times they don't nerve can not be totally brought under control I also get nerve just under my skin as the dermatomes get aggravated this is a horrible burning stinging pain where I can't bear to even touch my skin I have cubital tunnel syndrome on my left arm I had a fall from 11feet in May fracturing T12 and my Sacrum I recovered from this only to have someone slam into the back of our car not our fault they claimed liability next day the muscles in my whole back slammed tighter than safe which has increased all of my preexisting conditions and fractured vertebrae this has weakened my hip muscles from the top of my hip bone through my buttocks then September my breathing became laboured so only shallow breaths doing anything even slightly physical was enough to have me gasping for breath I left it which is not normally me as I am proactive about my health middle of November I decided to go and seek medical advice from my doctor who ran blood tests then more blood tests then more blood tests I kid you not my blood pressure was taken which was high in the 180 over 111 mark whilst awaiting my results I decided to have a shower which was tiring enough getting dried wore me out totally I came downstairs just in my underwear to sit on my settee to get my breath back just as I did there was a knock at the door which I answered it was our window cleaner wanting his money which was upstairs I stupidly tried to take them faster than I normally would so by the time I got upstairs I was really gasping for breath I grabbed his money and went back downstairs to my living room to find a £1.00 coin I went back to the front door my head started spinning my legs were giving way then crash I hid the cupboard door under our stairs the bang give me a startle I reached my front door handle and pulled my self up the window cleaner was beside himself I give him his money then went to my living room really really struggling to get my breath a tight band around the middle part of my chest I lay there just calming myself down my wife was out so I phoned 111 to ask for advice answered their questions next thing I am being asked to do is get my wife to come back home as I was going to be Bluelighted by ambulance to hospital paramedics arrived done their tests then 8 hours later after more blood tests and a chest Xray I was allowed to go home next day I got my results my gp ordered an ultrasound on my abdomen to take a look at my liver,gallbladder kidneys and pancreas they all checked out fine my doctor said your triycigcerides were 11.85 which is deemed very high my SLT levels were in the 200s which is extremely extremely high I also had hemolytic anemia which is when your bone marrow is not producing enough normal blood cells that contain oxygen and B vitamins my bone marrow was producing large abnormal blood cells which do not have much oxygen or B vitamins more blood tests were taken even one for lymes as I had been bitten by a tick during the summer this came up negative I was advised to come off one of my meds which may have built up to toxic levels in my liver I then had some repeat blood tests plus ten more the wife was with me this time and was astounded I was asked to monitor my blood pressure for 1 week whilst also starting on blood pressure meds when I had been in the hospital my blood pressure was 202 my blood pressure has been all over this week one of them reading 122/111 while my pulse was 98 I wanted to test a theory by going upstairs a couple of times the theory was is that I was not getting enough oxygen through my system its all up in the air at the moment until I hand in my blood test results I know this site is about depression and anxiety but having all of the above just makes it 10 times worse I also have a formal diagnosis of PTSD I am down to get CBT but guess what this is only part of my story if you want to know moPsoriatic arthritis in my spine my hands and fingers my left wrist my left collar bone which is badly eroded my left hip two types of psoriasis guttate and plaque which appears on my chest my torso my legs raynauds phenomenon in my hands I do struggle to stay warm I have scoliosis on my spine which basically my spine does not run in is correct shape thus causing a left lumbar muscle imbalance which causes untold lower back pain I have Chiari malformation type1 and syrinxes one at C2 then one at C6/C7 which goes all the way down my thoracic spine to the top of my lumbar spine at C6/C7 I have a bilateral herniated disc which is pressing down on a nerve that runs through my (left hand side ) through my upper back through my left shoulder blade over my left shoulder down my arm all the way down to my fingertips because its bilateral even if use my right arm it can send the most breathtaking horrific stabbing burning nerve pain all the way from my neck to my fingers if the muscles in my neck tighten then releases nerve pain that is like a lightning bolt of nerve pain that shoots through the side of my left neck through the side of left skull behind my left ear through my left temple and behind my left eye I once had 17 of these in one day the first nearly through me off my feet I take meds for the pain but they sometimes work other times they don't nerve can not be totally brought under control I also get nerve just under my skin as the dermatomes get aggravated this is a horrible burning stinging pain where I can't bear to even touch my skin I have cubital tunnel syndrome on my left arm I had a fall from 11feet in May fracturing T12 and my Sacrum I recovered from this only to have someone slam into the back of our car not our fault they claimed liability next day the muscles in my whole back slammed tighter than safe which has increased all of my preexisting conditions and fractured vertebrae this has weakened my hip muscles from the top of my hip bone through my buttocks then September my breathing became laboured so only shallow breaths doing anything even slightly physical was enough to have me gasping for breath I left it which is not normally me as I am proactive about my health middle of November I decided to go and seek medical advice from my doctor who ran blood tests then more blood tests then more blood tests I kid you not my blood pressure was taken which was high in the 180 over 111 mark whilst awaiting my results I decided to have a shower which was tiring enough getting dried wore me out totally I came downstairs just in my underwear to sit on my settee to get my breath back just as I did there was a knock at the door which I answered it was our window cleaner wanting his money which was upstair

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PAID STUDY IN THE US

OPPORTUNITY FOR PEOPLE WITH WARM AUTOIMMUNE HEMOLYTIC ANEMIA (wAIHA) TO PARTICIPATE IN AN INTERVIEW PROJECT

Global Patients is collaborating on a research project to better understand the experience of living with warm Autoimmune Hemolytic Anemia (wAIHA). The research project is being conducted with IQVIATM, a healthcare research firm (www.iqvia.com), and a pharmaceutical company that is working on developing therapies for patients with wAIHA.

We are seeking individuals diagnosed with wAIHA who are aged 18 years or older.

The research will involve individuals diagnosed with wAIHA participating in a telephone interview lasting approximately 75 minutes. In appreciation of the time required, we are offering $200 to compensate participants for their time.

The purpose of the project is to understand individuals’ experience living with wAIHA and get feedback from individuals diagnosed with wAIHA on some questionnaires that are often used to assess wAIHA in diagnosed individuals. These questionnaires aim to provide researchers and clinicians with an understanding of people’s experiences of living with wAIHA.

If you are interested in participating and are eligible you will not be asked to complete the questionnaires. Instead, we would like to get your perspectives on whether the questions in each of the questionnaires are relevant to your experience with wAIHA, comprehensive, and easy to understand. Your input will help to ensure the questionnaires are suitable for use in future clinical trials to more accurately capture experiences of people living with wAIHA.

The project is strictly for research purposes; there will be absolutely no sales nor promotional activities.

Prior to the interview, IQVIA will ask you to obtain confirmation of your wAIHA diagnosis from your physician or staff at your physician’s office. This information will help us confirm your eligibility for this project.

If you are interested in participating in the project, or have any questions, please contact us at rebeca@global-patients.com

Many thanks for your time and consideration!

#Lupus

#Anemia #Research #PAIDSTUDIES

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Does anyone else feel guilty for being lazy and staying in bed all day?

I was diagnosed with UC when I was11, Ankylosing Spondylitis at 13,and hemolytic anemia when I was 19, I’m now 22. I’ve also had many episodes of depression and suffer from panic attacks. Since I’ve been sick for the majority of my life, I feel like I’ve learned a lot about myself especially like how resilient and strong I am.
Something I have been dealing with is guilt for not doing as much as I want to. Because of my body constantly attaching itself , I’m tired a lot. I feel like basic things like running errands cause me to become drained. I want to be able to get up early, exercise, run errands, practise my sign language that I’m currently trying to learn, and whatever else I want to , but I’m so tired. I can barely get through two of those things before I feel like I need to lay down for the day. I feel guilt because while I’m not healthy, I’m not on my death bed and I feel like I should be able to do more.
Does anyone else experience guilt for not being able to do all that you want to? Should I be pushing myself to do all that I want to and hope that my body learns to keep up with the pace I’m setting?
#UlcerativeColitis #ChronicIllness #AnkylosingSpondylitis #MentalHealth

25 comments
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I’m tired #Lupus #sjogrens #AntiphospholipidSyndrome #HemolyticAnemia #Anxiety #Depression

Let me start by saying I want to be here. I’ve got so much to be here for and I’m grateful everyday for those things. Now let me say, I’m so tired. I’m tired of being sick. I’m tired of fighting the fatigue, the depression, the pain. I’m tired of fighting all these invisible battles. I’m tired of feeling like a burden. I’m tired of feeling as though my family would be better off without me. Sometimes I just want to give up. I don’t want to die. I just don’t always know how to keep going.

Ok now I can take a few deep breaths and carry on.

3 comments
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Does it ever feel like others don’t want you to get better? #Lupus #AntiphospholipidSyndrome #sjogrens #HemolyticAnemia

Has anybody ever had a family member or loved one that seems to thrive on your illness? I have a loved one that seems to get some sort of fulfillment out of being around me while I’m ill. Legitimately this person has been of some help in my harder times. But this person also goes around telling everyone that’ll listen about my health issues. It’s like they’re just “helping” for attention. Is there such a thing as a martyr complex?

3 comments
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Autoimmune hemolytic anemia idiopathic

Wow what a wild spring break I had.
Started with needing emergency surgery surgery went well unfortunately I got extremely bad pneumonia and had to be intubated for three days. My body couldn’t survive without this because my lungs couldn’t get oxygen and my heat was so weak that I couldn’t move blood right. After a week in the hospital I was released. As many of you know I have an anemia problem called autoimmune hemolytic anima. This means that my own body fights and destroy healthy red cells. I am currently in the hospital now for 8 days so far during this stay I when from a hemoglobin of 5.7-3.1-6.7 I need to be at a normal 12 to leave. I have received 6 units of blood to keep me stable and today will be my second dose of chemotherapy. After they we are hoping my body begins to respond and go back to normal function. I happy to get a purple power port on Monday but I is very much dependent on my test