- This topic has 13 replies, 4 voices, and was last updated 1 year, 6 months ago by Anonymous.
March 11, 2022 at 11:32 am #394870AnonymousInactive
I’m a 37-year-old woman whose every day is a constant pain.
I’ve been sick a lot since childhood. Hospitals and health clinics were my second home (and sometimes even my first). Despite health problems and a bad family’s and financial situation, I’ve always worked and studied hard to make a life for myself. Eventually, I graduated with a degree in computer science and earned certifications in network and server security. When the happy chapter of my life should have started, my body told me: Stop!
I’ve been trying hard my whole life. No matter how bad I felt (no matter how sick I was), I believed I could rise once again like a phoenix from the ashes.
Most people have never had the opportunity to work in as many different jobs as I have. Under the age of 18, I worked as a cleaner on the factory halls and in vulcanization. This is how I got the money for my first computer, among other things. Then there were easier jobs, like working as a computer graphic designer or as an accountant for EU grants.
I’ve had lupus for over 16 years. Of course I’ve been sick before, but it wasn’t until 16 years ago that I heard the diagnosis – the cause of my poor health. There is no treatment for lupus other than symptomatic. You just have to take your steroids, painkillers and other medicines and just live with that. If your illness is mild, you can work and function normally. Mine (lupus) was like that in the beginning. But the tremendous amount of stress from the deaths of close family members and the debts that fell on my shoulders made my health much worse. Once I dealt with all the problems and the adrenaline subsided – I couldn’t even get out of bed anymore; I practically stopped seeing.
It’s been practically 10 years since I finally dropped out of the job market. During this time I have re-learned how to walk many times…. every day has been a struggle for me. There have been better moments when I’ve hoped to get back to work and feel like somebody again. But eventually, gradually, largely due to successive stresses, my body degraded more and more. The number of pain-free days systematically decreased.
But my real problems began when my body could no longer sleep because of the pain. In December 2021, the inflammation of my trigeminal nerve worsened and the paralysis of my arm came on. No painkillers or sleeping aids worked. The only thing that helped was keeping cold water in my mouth all the time.
Can you imagine being in constant pain, not sleeping for 3-4 days just to be able to fall asleep for 2-3 hours and then not sleeping again for many days? Can you imagine keeping cold water in your mouth 24/7?
This was my reality for 3 months. In addition to the pains I’ve had for years – which include headaches, lumbar pain, rheumatic joint pain, abdominal pain – acute pain in the jaw and trigeminal nerve appeared.
For a period of 3 months I could not sleep, eat or drink. I couldn’t even exchange a few words with my own husband.
I prayed for death. But some people God doesn’t want with Him, no matter how much they beg.
Then, acupuncture proved to be helpful. A few treatments have helped me a lot. Unfortunately, the effect of the treatment has worn off. My body needs more treatments.
In a situation where, after so many years of steroids and other medications, nothing can help me anymore and suddenly it appears that acupuncture is my light at the tunnel – I desperately want this treatment. But I can’t afford it. My husband and I are still paying off previous acupuncture treatments.
That’s why I’m asking for help. I organized a fundraiser for my treatment. But I don’t have accounts on any social media to spread the fundraising.
Therefore, I’m sincerely asking for help here. Please read my story (part of it) and share the link to my fundraiser wherever you can. If you can, please support me financially.
If there’s anything I can give back – once I feel better – I’d love to do it. Just let me know – I’m happy to earn for my treatment.
Link to my fundraising:
or the full address:
My warmest greetings and best wishes for good health,
KamilaMarch 14, 2022 at 11:10 am #395105
Hello, sorry for all the hardship and pain you are going thru. Have you thought about having your husband learn acupuncture? This way you can get your treatments anytime. Talking to the acupuncturist, pretty sure they would be willing to help since you are in so much pain. Good luck to you.March 14, 2022 at 12:02 pm #395106
I’m sorry to hear about your difficulties. I too have experienced health issues and found TCM acupuncture very helpful. The most helpful part for me was electro acupuncture which is essentially a TENS machine. You can purchase TENS machines fairly cheaply for use at home.
If there is an acupuncture school near you, they my may offer acupuncture with supervised students at reduced rates. Some also offer student discounts.
I’m not sure if you have received herbal medicine from your acupuncturist. My experience is that the quality varies wildly from acupuncturist to acupuncturist. If you found the herbal medicine of a high quality and helpful it may be worth putting money towards that over the acupuncture itself. If you TCM doctor is willing to share your diagnosis and prescription with you, you may find the herbal medicine cheaper online.
Acupuncture is excellent at reducing stress and relaxation. These are things you can also work on at home. On YouTube there are forms of yoga designed for access for people with health conditions which I found particularly helpful.
March 15, 2022 at 5:55 am #395208AnonymousInactive
- This reply was modified 1 year, 6 months ago by Helcat.
“Have you thought about having your husband learn acupuncture?” << that would be lovely, but:
1. My husband works 10 hours a day, 7 days a week (he usually has 1 Sunday a month off). He lacks time to sleep. In addition, washing work clothes and fixing them every day, because the employer does not give work clothes often enough, takes his extra time. My husband doesn’t have time to eat a meal in peace, let alone do any learning.
2. My husband’s hands are constantly swollen. Since he started his current job, his hands have swollen twice and his hand tendon has partially knit together. I don’t think he is capable of holding something as tiny as an acupuncture needle in his hands.
3. It takes about 5 years to learn acupuncture (and Chinese medicine). After graduation, there is an average of one year’s internship in hospitals. Acupuncture is not something that can be learned in a few months.
In my case, the points that need to be punctured are close to the spinal cord and other important organs. These are not points that can be pricked just like that. It is one thing if you go to an acupuncturist with an infection and another if you have a chronic neurological disorder.
For some points it is possible to make a minimal mistake, but for others categorically not (the place must be very precisely located, the angle and depth of needle insertion too).
4. Another point – my current condition requires help now and not in a few years. And I haven’t found anyone so good who wants to help me for free. I wrote in my fundraising that I would also gladly accept acupuncture treatments if someone decides to do them for me free of charge.
As an additional question, because that’s what people always ask – if your husband works so much, why don’t you have money?
My husband is a manual worker, in a country where he does not speak German. My husband, like me, speaks Polish and English. He works for a small hourly rate but if he was paid for the number of hours he actually worked, I wouldn’t have to ask for help. But life is what it is. My husband’s employer is a master of creative accounting and worker exploitation. To change jobs, you need to have some savings. If you leave your job on your own, you do not get any allowance for 3 months. You have to survive somehow during this time, and the job market is not very interesting at the moment.
If a flat is maintained on only one salary and that of an unqualified manual worker, the chances of changing jobs are very difficult indeed.
I hope this answers all the points you have raised, Tommy.March 15, 2022 at 7:01 am #395210AnonymousInactive
Thank you for your suggestions.
As for electro acupuncture, I generally don’t tolerate anything electro very well. I feel very strong pain then, sometimes I vomit immediately and sometimes I faint then.
I am a computer scientist and have spent many hours in electromagnetic smog. I should be accustomed to electricity. But as the disease progressed, my tolerance for even the mere sound of electricity decreased.
As for the acupuncture school – a few things:
1. To enrol in any school, you first need to have money. We don’t have any savings – we barely have enough from month to month. I live with my husband solely on his paycheck. My husband is a manual worker and does not speak German. The biggest problem in my husband’s company is the constant cheating. The company treats workers like objects, robbing them of their working hours – often workers get half of what they should.
Staff turnover is huge, some come for 1 day, some for 1 hour – after seeing how hard the work is, they leave. Many people leave after their first paycheck. Nobody is fighting for their rights. Besides, a company with many thousands of employees all over Germany knows well how to exploit legal loopholes.
Anyway, my husband and I just try to survive from the 1st to the last of each month.
As I wrote, we don’t have a TV, just old laptops, we don’t have a sofa but a beach chair, and instead of some wardrobes we have cardboard boxes. I hope you understand that we cannot afford any studies.
2. Most days of the month, sometimes even whole months, I am unable to leave the flat because of my condition. When I do go out, I’m glad I managed to do a little shopping or go out for a little walk. I then take some time to recover from such an outing. I am unlikely to qualify for commuting to any school. I will leave aside my inability to get to school (no car and inability to take the bus due to current restrictions).
3. My husband is not suitable to learn acupuncture (please see my reply above). And I would first need to feel more normal to learn anything. At the moment I need to get rid of acute pain and not … learn about how to get rid of acute pain.
Regarding TCM recipes:
TCM formulas have been helpful to me in the past. But as the human body degrades more and more – acupuncture is also needed. Of course, herbs and acupuncture are the best combination, but you have to have money for that. Please see the first point.
Because of the pandemic, Chinese medicine herbs have become very expensive. I will agree that Chinese medicine herbs may be better than acupuncture but not for neurological disorders. It all depends on what you come to your therapist with.
Either way, I have no money for either, so I don’t have this dilemma of what to choose.
Regarding yoga – I have certain limitations when it comes to movements. Also, my body reacts better to Qi Gong. At least some, simple exercises I am able to do – but not every day though.
My warmest greetings,
KamilaMarch 15, 2022 at 4:40 pm #395277
I too went into debt, treating my chronic pain condition with electro acupuncture and cupping. I am sorry that I am not able to help you raise funds.
You’re probably not going to like my advice, but I give it with love because it’s realistic. Weekly acupuncture is unsustainable. For long term conditions, it makes sense to do what you can afford.
It’s a shame that you do not respond well to electricity because electro acupuncture and TENS are good for treating nerve pain. A family member with Lupus swears by her TENS machine too.
You said you get benefit from the needles, not much else. The primary purpose of acupuncture in my opinion, is to train you to relax. This can be achieved at home.
If you practice relaxing for 1 hour a day, you will likely see more benefit than 1 acupuncture session a week. A hot water bottle or an electric blanket it a good replacement for a heat lamp. Lie down, put on some soothing music and relax.
Since you have difficulty doing Qi Gong every day, I suggest that your husband assists you with passive range of motion exercises. Lack of activity causes muscle atrophy which is extremely painful. It is important to do what you can and when you can’t, have your husband help you. Physiotherapy exercises may also be helpful, if you Google your specific issues, you can find many recommended exercises to help strengthen and stretch muscles.
Also, I have a question for you, you don’t need to answer here if you don’t want to. What do you miss most from your life before your health issues developed? Is there a way that you can incorporate it into your new life?
I share this advice because I wish that someone shared it with me, during my darkest days. Best of luck with everything!March 15, 2022 at 10:20 pm #395319
@Helcat, you have some wonderful advice. And, I am sure that anyone in such pain would be grateful for some hope. Personally, I have been scammed so many times by people that I have a hard outer shell. Like when I suggested her husband learn acupuncture, all the excuses came out why he could not. It may be true or not. I do not know. But, since I have gone thru this with scammers, I tend to lose interest fast when people ask for money instead of help. So, it really is good to see you help.March 16, 2022 at 7:01 am #395327
Thank you, I appreciate the sentiment.
There are lots of desperate people in need, hoping that others will take their problems away. More often than not, difficult choices need to be made.
Healing often involves suffering and the willingness to endure it. Whether in the chair of a therapist’s office, the side effects of medication, a surgeon is operating, laying on an acupuncture table or doing the best you can to manage your health at home.
Unfortunately, this message doesn’t always provide hope.
March 16, 2022 at 9:50 am #395334AnonymousGuest
- This reply was modified 1 year, 6 months ago by Helcat.
I am not addressing this post to the Kamila, the original poster, because all she asked for is money (not advice or emotional support). And because I do not intend to open links and send money, I am addressing this post to the reader, whomever chooses to read this.
It seems like the original poster and her husband, according to her story, are Polish (“My husband, like me, speaks Polish“). At one time she worked “as an accountant for EU grants“, EU standing for the European Union. And currently, she and her husband reside in Germany, where her husband works (“My husband is a manual worker, in a country where he does not speak German“).
According to her story, her husband is exploited in the workplace: “My husband works 10 hours a day, 7 days a week… He works for a small hourly rate (not) paid for the number of hours he actually worked… My husband’s employer is a master of creative accounting and worker exploitation“.
dw. com/ German unions back exploited migrant labor: “In Germany, many migrant laborers end up working degrading and badly paid jobs. Often they don’t know their rights, a fact that’s exploited by some companies. Now Germany’s trade union federation has taken up the fight.
“The promise of a better life and hard cash in Germany attracts workers from Romania, Bulgaria, Poland or Lithuania – but more often than not they are surprised by what they find here: backbreaking work and degrading conditions with bad or even no pay… Six Poles in Cologne had a similar experience, and Horst Küsters is helping them on behalf of the Verdi trade union which has tasked him to look into cases of extreme exploitation. The men used to work… six to seven days per week, 10 to twelve hours per day. Instead of the agreed wage, they only received 50-70 euros per month”, etc.
I think that an intelligent and educated original poster with perfect English, access to the computer and a degree in computer science (“I graduated with a degree in computer science and earned certifications in network and server security“), a woman capable of posting such organized, well-written posts on tiny buddha- is not one who did not know about labor exploitation of migrant workers before migrating to Germany. And definitely, she is able to access information and resources in Germany so to correct the situation. Perhaps suing for monetary compensation for labor abuse and for the effects it had on her husband is an option (“Since he started his current job, his hands have swollen twice and his hand tendon has partially knit together“), an option that will provide the original poster with money needed to treat her pain and her husband’s hand injury.
Regarding her pain: “my real problems began when my body could no longer sleep because of the pain. In December 2021, the inflammation of my trigeminal nerve worsened… No painkillers or sleeping aids worked“.
Trigeminal Neuralgia, from what I read, is “an inflammation of the trigeminal nerve causing extreme pain and muscle spasms in the face… A blood vessel is often found compressing the nerve”.
There is much more than “painkillers or sleeping aids” or acupuncture that is available to treat the condition:
(1) medications: “Anticonvulsants: To lessen the pain and to treat trigeminal neuralgia… Anti-spasmodic medication: Relax muscles”,
(2) injections: Neurotoxins: Botox injection helps to reduce pain in conditions where tablets fail due to side effects… Glycerol injection: Injection of a small amount of sterile glycerol destroys the trigeminal nerve and blocks pain signals”,
(3) a non-invasive surgical procedure: “Microvascular decompression provides freedom from pain in about 75% of patients presenting with drug-resistant trigeminal neuralgia… this involves a small incision behind the ear and some bone removal from the area”, and more (Wikipedia and other).
March 16, 2022 at 2:52 pm #395372AnonymousInactive
- This reply was modified 1 year, 6 months ago by .
“I too went into debt, treating my chronic pain condition with electro acupuncture and cupping. I am sorry that I am not able to help you raise funds.” << I am very sorry to hear about your situation. I know how hard it is to pay off debt when you are not healthy. "It’s a shame that you do not respond well to electricity…” << I regret that, too. I know how certain electro-devices can help many. "Also, I have a question for you, you don’t need to answer here if you don’t want to. What do you miss most from your life before your health issues developed?” << I have been ill since childhood. A medical oversight... As part of the complications from the meningitis, permanent changes have developed in my head and eyes. Many of the remaining problems developed in the aftermath. Some of my disease burden (autoimmune) is genetic (both parents). But if you're asking about what caused the huge flare-up (the deterioration of my health), I've already written: the death of close family members and a debt that fell on my shoulders when I was a child.
"Personally, I have been scammed so many times by people that I have a hard outer shell.” << Ten years ago my attitude was similar. Therefore, if I supported any fundraising, it was only for animals - they don't lie. But life has shown me the lives of the people quite down there. Without going into details, I will just write my little observation. Those I have seen who really need help somehow never get it. People who support fundraising somehow instinctively choose fundraising of people who are not that poor (or even celebrity fundraising). It is not for me to judge, everyone has the right to make their own choice whether they want to help someone or not. But it creates a false picture of reality for people like you, Tommy. In the past, I don't know how many times I have been scammed (by supporting someone financially). But I do not care. I believe that if I have helped someone, it is my intention that counts. It is the love I have poured into another person. It's the sacrifice I made to give someone food or money even though I myself was sometimes lacking that month. I respect your standpoint, Tommy. But consider that there is always some chance that you could be wrong. If you come across a person who is chronically ill, for such a person your words can be very hurtful. Some may even cry... "Like when I suggested her husband learn acupuncture, all the excuses came out why he could not.” << For you they are just excuses, while I have tried to explain at least part of the circumstances in which we find ourselves. You already have your image of me in your head and nothing is likely to change that. Probably my words at the fundraising: "Also, if you have a bike that is in working condition and that you do not need – I’m also very happy to accept such a donation. A functioning bike would help my husband a lot to do our shopping“, you consider an impertinence on my part.
Thank you very much for your in-depth analysis (thorough reading).
My husband and I are Polish, that is correct. But we never planned to come or live here.
“The promise of a better life and hard cash in Germany attracts workers” << I was able to live in the "Eldorado" (Germany) permanently when I was 12 years old. I never wanted to. I was coping in my own country. So did my husband. However, at some point in his company, the bosses changed and the husband's paycheck did not then allow him to live on his own. At that time we were not yet married, and I lived with my grandfather and mother. My husband's salary did not allow him to rent a room (not a flat, a room) and pay all the bills and food. In the meantime, in addition to my health problems, my grandfather's health had deteriorated considerably. Considerable funding was needed for his treatment. Then my then-boyfriend went to Germany to work in production. Due to various problems with the intermediary office, my husband soon changed to a more financially stable job. While we were coming out ahead with medical costs, my grandfather died. The situation regarding housing and other matters has changed dramatically. Things also started to go wrong in my husband's company - court cases for bribery and breaking other laws. I wanted my husband to return to the country, but first we had to find him a new job so that he had somewhere to go. Then the pandemic restrictions came in and I had to make a decision quickly. Due to lack of funds, I moved to Germany - within a week we rented a flat and I moved to Germany. We slowly paid off the rest of my grandfather's medical expenses and the cost of moving and renting a flat (deposit). Then further changes took place in the husband's company and the employees started to be cheated more and more on their wages. "I think that an intelligent and educated original poster with perfect English…” << Thank you very much for your compliment. But my English is not perfect, I just know which correction tools to use. "And definitely, she is able to access information and resources in Germany so to correct the situation. Perhaps suing for monetary compensation for labor abuse and for the effects it had on her husband is an option” << very pertinent remark. Let me start by saying something else: I am the daughter of a lawyer. My dad was a lawyer, but because he wanted to help people, at a time when he shouldn't be doing it - he was eventually forced to stop being a lawyer. So he was a manual worker most of his life. Apart from many genetic problems, I inherited from my father a talent for painting and the ability to read legislation. I had a total of 3 semesters of law in both my studies - the criminal code is like a book to me. So how is it possible that I am unable to do anything about the current situation? Because the problem relates to time registration, which is a famous problem in Germany. German legislation (Labour Law Act) states that overtime must be recorded. German law does not oblige employers to register normal working hours. As a result, many companies interpret the regulations quite freely - many places do not even have a working time recorder. In places where there are recorders, there are situations where working hours evaporate from time sheets. People are not able to get their timesheets because there is no legislation that enables them to do so. You can go to court about your overtime, but you must have a way to prove the time worked. Witnesses and monitoring would be essential. However, monitoring records can disappear. And as for witnesses... No one will vouch for you. There is constant turnover in my husband's company. In response to incorrectly calculated wages, people dismiss themselves overnight (they don't even come to collect documents). Of course this is total stupidity, but most manual workers in Germany (incomers) often don't even have a high school diploma. Many employees do not even know the names of their colleagues. There are, of course, a few permanent workers, but these workers are afraid to say anything. These permanent employees are obviously being ripped off on their paychecks, as is my husband, but they are afraid to say anything lest things accidentally get worse. I cannot force these people to cooperate. Over the last year and a half, as the situation has gradually deteriorated, I have tried many times to change things. People do not agree to sign petitions on obvious rights violations, let alone be a witness in a case whose success is not entirely certain. At the same time, they all expect me to fight for them, on their behalf, but without their participation. As for the court case itself - the BMAS (Federal Ministry of Labour and Social Affairs) decision makes the whole thing very difficult. In short - the European Union has issued a decree regarding the obligation to register all working time by the employer, but without the exact date on which the decree comes into force. The European Union Members therefore have a certain discretion as to the timing of implementation. "On the other hand, the Federal Ministry of Labor (BMAS) explained that the ECJ decision refers to the Spanish legal situation and that there is no direct implementation obligation for other countries. So far, the German Working Time Act (ArbZG) has not been changed.” << google translation from german: "Andererseits erklärte das Bundesarbeitsministerium (BMAS), dass sich die EuGH-Entscheidung auf die spanische Rechtslage beziehe und dass keine unmittelbare Umsetzungspflicht für andere Länder bestehe. Bisher wurde das deutsche Arbeitszeitgesetz (ArbZG) jedenfalls nicht geändert.”
To determine overtime, normal working hours must be recorded. Due to the lack of an obligation to register normal working time, the German employer does not see the need to introduce a reliable working time registration system that the employee could view. German lawyers were supposed to take care of it, but they were interrupted by the pandemic.
Employers, on the other hand, began to use the BMAS interpretation to their advantage (read -> to cheat the employee more).
I will comment on the rest but later (sorry, my eyes hurt a lot).March 16, 2022 at 10:41 pm #395442
When one learns that they were fooled and used for their money, it is not the thought of having well intentions that comes to mind. There is no warm fuzzy feelings from having everything you have taken from you by con artists. Now, I do not say you are nor do I say you are not. I do not know. But, everyone goes by their past experiences. I wish you happiness.March 21, 2022 at 3:47 am #395719
I really am sorry to hear you are in constant pain. It sucks to be a victim of one’s own body. I understand how debilitating it feels to have one’s attention constantly drawn to pain. Hope you feel better soon.March 21, 2022 at 4:32 pm #395785
It looks like my previous reply was filtered out by moderators. I’m not sure why? Possibly because I shared a link to resources. Fortunately, I copied the message before attempting to post it. Please see below:
Thank you for you kindness! I appreciate you sharing your difficulties.
I believe you when you say there is a language barrier, because you misunderstood my question.
What do you miss most from your life before your health issues developed?
I wasn’t asking about your health condition. I was asking what activities you enjoyed but can no longer do because of your health condition.
For me, it was important to include activities that I missed doing in my new lifestyle.
For example, I loved hiking. But I wasn’t able to hike anymore because of my health issues. When I don’t go outside I feel very unhappy. Now, I go on short walks and look for places to sit down and rest at frequently. When I don’t feel up to that, sitting in my garden or sitting in a car and looking at the countryside is helpful.
I hope the bold text was helpful. It it isn’t, please ask me to stop using bold text.
Your financial situation will improve when your husband learns German. This will help him get a better job.
I wish you both the best of luck! You seem lovely person and have taken care to reply to everyone that posted in your thread.
March 23, 2022 at 9:30 am #395947AnonymousInactive
- This reply was modified 1 year, 6 months ago by Helcat.
Thx guys for your replies.
My wife will reply you when she can. Her state worsened.
She doesn’t tolerate well the mixture of Clonazepam, Neurotop and Morphine so she’s like veggie right now.
She replies when she can.