Letter to friends and family
I have read this many times before but found it again and thought I would share it. It is written so well and expresses how lupies feel in general… I did not write this although it fits me well…
Enjoy!
A letter to be shared with friends and family
by Theresa Stoops in Florida
WHAT YOU SHOULD KNOW ABOUT ME
My pain – My pain is not your pain. Taking your arthritis medication will not help me. I cannot work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is not well understood, but it is real.
My fatigue – I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can’t. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can’t help you with yard work today, it isn’t because I don’t want to. I am, most likely, paying the price for stressing my muscles beyond their capability.
My forgetfulness – Those of us who suffer from it call it brain fog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age, but may be related to sleep deprivation caused by chronic pain. I do not have a selective memory. On some days, I just don’t have any short-term memory at all.
My clumsiness – If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.
My depression – Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian’s patients suffered from Chronic Pain as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.
My stress – My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I’m not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.
My weight – I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My ability to control my appetite is broken, and nobody can tell me how to fix it.
My need for therapy – If I get a massage every week, don’t envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot- filled. If I can stand the pain, regular massage can help, at least temporarily.
My good days – If you see me smiling and functioning normally, don’t assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days, weeks, or even months. In fact, the good days are what keep me going.
My uniqueness – Even those who suffer from chronic pain are not alike. That means I may not have all of the problems mentioned above. I do have pain above, below the waist, and on both sides of my body that has lasted for a very long time. I may have migraines, hip pain or shoulder pain, or knee pain, but I do not have exactly the same pain as anyone else. I hope that this helps you understand me,
I have shared these thoughts with many “Lupies”, as we call our self, and they agree with me. So when you see someone at the store who gets out of the Handi-cap space and they look fine — Do not judge them as you may Not know their Inner pain.
==== And always remember I LOVE YOU! ====
Cats and chronic disease
I am repeating this post because, believe it or not, while I was at the doctor’s office today, the Arthritis Today magazine had an article about pets and arthritis. Ironic, but I figured it made for a re-posting of this older post. Enjoy!
I have a cat. Her name is Shelby. She was a foundling who adopted me. She is also so much more than just a feline friend.
Shelby has an intuitive nature that allows her to see when I am ill and respond to me. When I am in bed, like now, she is laying next to me. When I am asleep, she lays either next to me or above my head. Some days, she is not around and that is usually when I am feeling good. She goes about her business as she normally would do.
When my lupus is acting up, though, she is right by my side, purring and rubbing on me and trying to help me feel better. It is uncanny, (or should I say, uncatty) how she knows without me saying a word, that I feel awful. She is not overly in my face, but she is on the periphery should she be needed.
While my cat is unique, she is not the only one who is intuitive. I read a story a few years back about a nursing home that had “adopted” a stray cat. The cat was allowed to roam the halls and “visit” with the residents. This cat had an intuitve nature too. It was discovered that the cat would go to a particular resident who was imminently ready to pass away. When a resident was at this point, the cat could not be coerced to leave the room of the resident. It would stay until the person passed away. It became noticible to the staff and they would know by the cats behavior, whether there was an impending death or not. They felt that the cat didn’t want the person to be alone, so it would stay on the bed with the person until after they passed.
I also saw a story about cats and patients with AIDS. The story said that those patients who had cats, tended to live longer than those who did not have a pet cat. Cats were the pet of choice because they did not require as much work as dogs and chronically ill people may not be able to give a dog the exercise they need. Who knew?
So, my Shelby has this same empathy, but for me. She has been a true and loyal friend in my down times and always helps me with her presence. She is not a “talker” type of cat, but she is always here, by my side, when I need her most. She does not judge me, or make me feel I am worthless when I cannot do things. She is just here, faithfully, making me fell loved.
Funny that a cat can do that and so many humans can’t. We should take a lesson from the animals on this one!
Hospital Again
Hello everyone! I sincerely hope that you have all had a great week! Our weather here in Ohio has been beautiful! Sadly, I did not get to enjoy it.
I had to prep for a colonoscopy which meant that I was tied to the toilet for the weekend. Yay me! I am glad that I had it though. It was on Monday morning I had it. I knew something was different when I woke up and discovered it took a lot longer than normal. I was also hurting a little. I have had lots of these since 2001 so I know the drill.
Anyway, I found that they had removed three small 2 mm polyps and one big 3 cm polyp. That big one was the worry. They have all been sent for biopsy and I find the results on Monday. Ok, whew!! Made it!!
Then, on Monday evening I began to hurt in the region of the big polyp removal. I went to sleep eventually but woke with more pain. I kept pretending to myself ( something I am quite good at) that it would go away. Instead, it got worse until finally I called the doctor at 4:30 pm. He told me to go to the ER and have a ct scan. Easy enough, right? Wrong!
I got there at 5:30 pm (driving myself, don’t ask). After triage and IV port in, bloodwork was sent off and they finally got a room for me. I went back and got dressed in hospital garb and waited. I saw the doctor around 8 pm and he ordered morphine for pain and zofran for nausea. Now I was scrambling texting trying to find a ride for later when I left. Remember, I drove myself ( again, don’t ask).
Finally I got my ct scan. The doctor returned and said my lymph nodes were inflamed around the area the polyp was removed. Great! The good news was my colon wasn’t perforated!! Ok, lymph nodes, sounds like lupus is acting up to me but what do I know?
I was then told I was being admitted. What!? Oh just great! So, now I am texting saying I am not needing a ride after all. Around 1 am I am taken to a room and after another hour of admission process I am finally able to rest a little bit. I slept for an hour before the lab came for blood again. Next was the tech for vitals. The nurse was next with meds. So, no sleep.
I must have seen seven different doctors on Wednesday morning. Finally one came in and said I had “alongmedicalnameicantrecall” syndrome that a few people get after a colonoscopy. Figures. This was the first time I ever had anything like this!
I was told if I could eat lunch, I could go home. Yippee!!! Well, after lunch, another doctor came in and said I would stay one more night just to be safe. Oh no!!! After she consulted with the other doctor, it was decided it was up to me! I dressed quickly and asked for my paperwork. Ah! The sweet smell of success!! I was breaking out!! Then, oops!!!!
They asked how I was getting home. Thankfully I had not had pain meds that day so I told them I was driving myself. It almost was an issue but in the end, they walked me all the way to my car and I was out of there!!!
I stopped and got my meds on the way home them got home. Took my meds and sat in my recliner with the intent of watching a few shows that were on the dvr. The joke was on me! Once I sat back my kitty jumped into my lap and I woke up at 8 this morning! Now, that’s not so bad but I went into the bedroom and promptly fell back to sleep. I finally woke up at 3 pm! I guess I was sleepy!!!
So, I must apologize for being MIA but it wasn’t intended. To beat it all, the weather today is cold rain!! All those beautiful days and I was out. Crap. Oh well, at least I am home now!
Please dear friends I would like to ask for prayers that my biopsy comes back ok. I am a little worried. I am not going to obsess but it is there until they give the all clear.
Hopefully I will steer clear of hospitals for a long time now. Well, one can hope anyway! Hope you are all enjoying spring wherever you live! ~Jen
Spring May Have Finally Sprung?
Well my friends, I think we might actually have lift off for spring! A few times it looked this way only tone buried under snow again. Thankfully, I think the true spring has taken hold so off we go! I love this time of year despite my body’s trials. This time of year brings a sense of renewal to body and soul. The thoughts of beautiful things, such as flowers and babies fills my mind.
I have been in pain, yes, but somehow the beautiful weather dulls it a bit. Psychological, yes, most likely, but it feels great to be alive in spring!
I am planning my garden and getting excited to be growing heirloom plants that are more nutritional than the GMO substitutes available at most stores. I am happy to start my flowers too. I am also planning an herbal garden so I can use fresh herbs in foods. Yes, I love spring!!
Our lupus walk is approaching as well. Still have no team members and I am the only donater so far but I refuse to let it worry me. I have made it to this side of winter and today, nothing will slow me down!! Things will improve, I am sure!
I have also been working on organizing the house. I need to get things in order so that I can relax and enjoy the warmth of spring and summer that is quickly approaching! Funny thing, I never enjoyed spring cleaning before but after this particularly hard winter I find myself enjoying it!!
So off I go to face my day! I hope each of you will slow down and appreciate all Gods Works during this season of warm renewal of life!! I will be!!
Crazy Me
I have been a little out of sorts lately. I have had to undergo a whole slew of tests and still have more coming. It seems I am falling apart. Not really, but it feels like it at times.
I will detail later what is going on. Suffice to say, I may need surgery in the very near future. Yuck!
In the meantime i am concentrating on good things. For example, this weekend I am going to Kentucky for my niece Megan’s baby shower. I am not driving so hopefully it will not be too bad on this old body.
The weather is crazy right now here in Ohio. I know that Ohio is unpredictable, especially when it comes to the weather but getting several inches of snow one day, causing car pile ups, school delays and such, and then it all melts the next day! Hm, wonder why I am in so much pain lately? I have no clue.<insert sarcasm here>.
This is a time of remembrance as well. Reflecting on the love God has for me by allowing his own son to die for my sins is a pretty big deal. This time of year reminds me that I am not worthy to be a Christian, yet God has provided a ransom sacrifice, in the form of His son, Jesus, so that I can be one. I am grateful for that gift.
I also found out that unbeknownst to me, I am a great grandmother! My granddaughter, Leng, had a baby girl seven months ago! Leng is my step granddaughter but I claim her as my own. Her beautiful daughters name is Jean. I understand why I was not told but no matter, I am a great grandmother!!! Happy happy joy!! Another little girl to spoil!!!
Thanks you all for letting me vent a bit. It is the way I can get stuff off my chest. You all rock!!!! Than you so much! Hope each of you have very happy days today and in the future!
Road Trip
Well, my neice is having her first baby and she lives in Louisville. We drove down to my sister in laws house to stay until the shower. She lives outside of Lexington. I am really looking forward to the shower and seeing my neice pregnant in person. I have only seen pictures to this point so I really want to see her.
The trip started out pretty well. The drive was not bad, we missed rush hour in Cincinnati which is always a good thing. We got down here and this is where it gets interesting. Road trips lately seem to aggravate my sciatica and so sure enough, it acted up. This made me unsteady (or more unsteady than usual). I laid down to rest it and needed to get back up. I called for my husband to help me and he said he was eating. I decided to get up on my own. I rolled off the bed and promptly fell onto my left side. I yelled for help and finally got up and dusted myself off and thought it was a one off. I was wrong.
When I went to bed, I fell asleep and woke to acid reflux. What fun!! I took meds and had to sit up until they went into effect. The short version is that I was up most of the night last night. I finally get back into bed around 6:30 am.
At 10:00 I was awakened by my husband asking me to get up and cook his breakfast of bacon, eggs and toast. I got up and did that and basically discovered that I hurt pretty bad from my fall. I tried to get a nap later this afternoon, but it just was not gong to happen. I am really hurting on my left arm and shoulder plus my rib cage and left knee. Hey, I do not do things halfway. Crazy.
Don’t get me wrong, I am having a great time visiting with family. I am just doing it in more than the usual amount of pain. Oh, and my blood pressure is high. My feet are swelling and did I mention pain on my left side?
So my first day and night have been eventful to say the least. Here’s hoping tomorrow will be better.
Neurological Symptoms of Lupus
I got this information from the website below. I found it short and sweet. I have neurological minifestations from lupus and therefore this interests me. I thought maybe you all would like it too.
From: http://www.ninds.nih.gov/disorders/lupus/lupus.htm
What are Neurological Sequelae Of Lupus?
Lupus (also called systemic lupus erythematosus) is a disorder of the immune system. Normally, the immune system protects the body against invading infections and cancers. In lupus, the immune system is over-active and produces increased amounts of abnormal antibodies that attack the body’s tissues and organs. Lupus can affect many parts of the body, including the joints, skin, kidneys, lungs, heart, nervous system, and blood vessels. The signs and symptoms of lupus differ from person to person; the disease can range from mild to life threatening.
Initial symptoms of lupus may begin with a fever, vascular headaches, epilepsy, or psychoses. A striking feature of lupus is a butterfly shaped rash over the cheeks. In addition to headache, lupus can cause other neurological disorders, such as mild cognitive dysfunction, organic brain syndrome, peripheral neuropathies, sensory neuropathy, psychological problems (including personality changes, paranoia, mania, and schizophrenia), seizures, transverse myelitis, and paralysis and stroke.
Is there any treatment?
What is the prognosis?
What research is being done?
Investigators researching lupus seek to increase scientific understanding of the disorder and to find ways to treat, prevent, and ultimately, cure it. Several components of the National Institutes of Health support research on lupus
Call Me Mrs. Rip Van Winkle
Call me ms van winkle
written on Nov. 7 th, 2012
Ok. I admit it. I have slept for about 38 hours. I missed the whole Election Day dramas. I do not even know who won. I will find out but wow!! You see, my cable was stopped so I have no tv, phone or Internet right now. It’s not looking good for the future either. I think I was overly optimistic about how far I could stretch a buck. Oh well, this will be ok. I could make this into a no tv thing for a year and blog about it. Yeah, now I have a plan!! He he he.
So I will be writing my blog on my phone and whenever I am in a wifi zone, I will upload it. No worries, the blog will go on!!
I am motivated to get this place in shape for winter. I have moved furniture and such but finally have a plan in mind that I think will work. I just need to attack this plan one thing at a time. Overdoing it causes days of sleep, as shown by the last day and a half! All I did was walk to the library to use their wifi. Ok, so it is 3/4 mile round trip. I get it. Lupus wasn’t happy. Well pooh on you lupus! I will continue to live my life no matter what you do!! I needed to sleep anyway. Lol.
Seriously though, I will miss my few shows I watched. I always dvr’d shows and when I had a chance I would watch them. There are only a few I really enjoyed. I can deal with it. Plus, I can focus on more spiritual things too!! This gives me more time for studying the bible and adjusting my life to be a better Christian! See, focus on positives!!
So, in this hiatus from electronic gadgets, I will still be posting. Just please bear with me as I try to adjust and remain focused on the positives of my life!! Thanks!!
Hurricane Pressure
I have heard from a number 0f my lupie friends and the consensus that the hurricane brought about pain and aches from the low barometric pressure. Normally, I would be in the running with everyone else. However, a curious thing occurred for me.
When others were experiencing these issues, I found that I actually felt better! Yes, better! I know, it took me by surprise too. As the low front came into Ohio, my pain lessened and I felt better. As the weather moved in and the rain and winds kicked up, I felt even better. I was amazed because usually storms and fronts in the weather cause me to have pain.
It makes me wonder if the reason is the movement of the front from east to northwest in that hurricane circular. I truly do not know why but hey, I made hay while the storm raged.
Of course, once I realized I felt better, I woke up and found that the pain had returned and that I had missed an opportunity to do so much more while I felt good. By the time I realized I was feeling good, I woke up back at square one.
Ah well, at least I had that small glimpse of milder pain and “normalcy” for a day or two.
I hope everyone is safe and warm and did not have too much pain physically or emotionally or lost their home. Have a great day!!
Related articles
- Invisible Suffering from Hurricane Sandy (painfighter.wordpress.com)
Periphreal Neuropathy Treatment and Drugs
Part 8 in this series from the Mayo Clinic
Treatment and Drugs
Treatments and drugs
One goal of treatment is to manage the condition causing your neuropathy. If the underlying cause is corrected, the neuropathy often improves on its own. Another goal of treatment is to relieve the painful symptoms.
Medications
Many types of medications can be used to relieve the pain of peripheral neuropathy, including:
- Pain relievers. Mild symptoms may be relieved by over-the-counter pain medications. For more-severe symptoms, your doctor may recommend prescription painkillers. Drugs containing opiates, such as codeine, can lead to dependence, constipation or sedation, so these drugs are generally prescribed only when other treatments fail.
- Anti-seizure medications. Drugs such as gabapentin (Gralise, Neurontin), topiramate (Topamax), pregabalin (Lyrica), carbamazepine (Carbatrol, Tegretol) and phenytoin (Dilantin, Phenytek) were originally developed to treat epilepsy. However, doctors often also prescribe them for nerve pain. Side effects may include drowsiness and dizziness.
- Capsaicin. A cream containing this naturally occurring substance found in hot peppers can cause modest improvements in peripheral neuropathy symptoms. Like spicy foods, it may take some time and gradual exposure to get used to because of the hot sensation this cream creates. Generally, you have to get used to the heat before you can experience pain relief. Doctors may suggest you use this cream with other treatments.
- Lidocaine patch. This patch contains the topical anesthetic lidocaine. You apply it to the area where your pain is most severe, and you can use up to four patches a day to relieve pain. This treatment has almost no side effects except, for some people, a rash at the site of the patch.
- Antidepressants. Tricyclic antidepressant medications, such as amitriptyline and nortriptyline (Aventyl, Pamelor), were originally developed to treat depression. However, they have been found to help relieve pain by interfering with chemical processes in your brain and spinal cord that cause you to feel pain. The serotonin and norepinephrine reuptake inhibitor duloxetine (Cymbalta) also has proved effective for peripheral neuropathy caused by diabetes. Side effects may include nausea, drowsiness, dizziness, decreased appetite and constipation.
Therapies
Transcutaneous electrical nerve stimulation (TENS) may help to relieve symptoms. In this therapy, adhesive electrodes are placed on the skin, and a gentle electric current is delivered through the electrodes at varying frequencies. TENS has to be applied regularly.
Periphreal Neuropathy Symptoms
Continuation of the series on periphreal neuropathy from the Mayo Clinic.
Symptoms
Symptoms
The nerves of your peripheral nervous system send information from your brain and spinal cord (central nervous system) to all other parts of your body and back again. Nerves that may be affected by peripheral neuropathy include:
- Sensory nerves that receive sensations such as heat, pain or touch
- Motor nerves that control how your muscles move
- Autonomic nerves that control functions such as blood pressure, heart rate, digestion and bladder function
Most commonly, peripheral neuropathy starts in the longest nerves — the ones that reach to your toes. Symptoms vary, depending on which types of nerves are affected. Signs and symptoms may include:
- Gradual onset of numbness and tingling in your feet or hands, which may spread upward into your legs and arms
- Burning pain
- Sharp, jabbing or electric-like pain
- Extreme sensitivity to touch, even light touch
- Lack of coordination
- Muscle weakness or paralysis if motor nerves are affected
- Bowel or bladder problems if autonomic nerves are affected
Peripheral neuropathy may affect one nerve (mononeuropathy), two or more nerves in different areas (multiple mononeuropathy) or many nerves (polyneuropathy).
When to see a doctor
Seek medical care right away if you notice any unusual tingling, weakness or pain in your hands or feet. Early diagnosis and treatment offers the best chance for controlling your symptoms and preventing further damage to your peripheral nerves. If your symptoms interfere with your sleep or you feel depressed, your doctor or pain specialist may be able to suggest treatments that can help.
Periphreal Neuropathy Definition
Well, in light of the progression of my neuropathy, I decided to check out more information. I went to the Mayo Clinic website and found this information. I have re-read the information in light of the new developments in my case. As with any portion of our lupus, or autoimmune journeys always talk to your doctor before starting any new treatments.
From Mayo Clinic website:
Periphreal Neuropathy
Definition
Peripheral neuropathy, a result of nerve damage, often causes numbness and pain in your hands and feet. People typically describe the pain of peripheral neuropathy as tingling or burning, while they may compare the loss of sensation to the feeling of wearing a thin stocking or glove.
Peripheral neuropathy can result from problems such as traumatic injuries, infections, metabolic problems and exposure to toxins. One of the most common causes is diabetes.
In many cases, peripheral neuropathy symptoms improve with time — especially if the condition is caused by an underlying condition that can be treated. A number of medications often are used to reduce the painful symptoms of peripheral neuropathy.
ER Visit
Well, the neuropathy pain has been getting worse each day. I see the neurologist on the 24th. In the meantime, a friend of mine took me to the ER because I cannot sleep from the pain. It is not only both feet now, it has also moved into my legs!
For the past several days I have gone to bed and the pain wakes me back up. It is a vicious cycle of pain and no sleep. Frustrating.
So, I headed to my ER. They actually got me right in and checked me out. Decided no blood clots were present. It is just the pain of the neuropathy.
Neuropathy is usually associated with those who have diabetes. A little known fact is that when lupus starts affecting your brain, it can cause your nerves to go haywire, just like in diabetes patients. It causes a pins and needles type of pain. It causes acute pain and can be really horrible. I have posted previously on this subject of the connection from lupus.
Sorry if this post is a little disjointed. The ER doctor gave me a healthy dose of morphine along with a triple dose of neurontin. The pain is still there, just not as bad. I have some relief finally. Now, on the 24th me and my neurologist are going to have a major pow wow and get this pain under control. I cannot live like this, in constant pain. I totally understand why some of our fellow lupus warriors have committed suicide. When you have this pain all the time, you get to wondering why should you keep trying. Been there. Now, if this will give me a little break from the pain, maybe I can get back on track and feeling better. Ok, a girl can dream at least.
Related articles
- Neuropathy Pain Relief (answers.com)
- Medicines For Relieving The Ache Of Peripheral Neuropathy (oleole.com)
Personally
Well, I guess it is time for me to add a personal post. Times are getting better, then worse. Each day has been a challenge in one way or another lately. I have not disclosed the reasons why to date but feel I need to do so now, if only to allow me to shake the negatives by putting them out there and dealing with them more fully.
I have been dealing with a series of tests from several doctors and the results are finally coming in. I had one test come back good. Yay me! However, two other tests came back with issues. As a result, I have had two more tests done to further review the initial results. I still have not heard from three other tests yet.
I still do not think I want to disclose the exact things that are being checked, as it could be a bunch of nothing to worry about. That being said, it is worrying just to have abnormal results and have to take more tests. I have been tied up in this drama of not knowing now for a few weeks and it can wear on the already sick body. It has done exactly that for me.
To illustrate, last night I was in bed and woke up to pain. Yes, the pain woke me up and forced me to sit up and try to get it to stop. I only had over the counter NSAIDS to take, and believe me, they did not help much. I found myself crying and in pain and wishing I could just go back to sleep.
I am going to see about being more proactive in my care again as this pain is crazy to endure when I should not have to. I could be a druggie ont he streets and get the relief I need but no, I am an honest person who cannot seem to get the pain relief I need. Oh well, you can read my tirade on that in the post from some time ago called “Police Mentality and Pain Control“.
I will share what is going on when I know more about it myself. Until then, I apologize for not posting and being a bit on the selfish side. I am just overwhelmed and hope these things get resolved sooner than later. Thanks for letting me spout off and get it out there! It really helps me to be able to vent on this blog and then feel better.
Why I Walk
To be honest, last year I did not walk but still attended the event. This year is not looking too good for me walking either, but I will still tell you why I attend the walk. When I say I walk, I mean attending the event, since walking is not an option due to the disease activity right now. Please read…
I walk for my family, my children and grandchildren. They are at risk of developing Lupus because of me. I walk so they will not have to suffer and feel the pain of joints hurting and rashes appearing and organs inflamed. I walk for their future being pain free and healthy. I do not want this disease to impact them as it has me.
I walk for those who are unable to walk the walk anymore. They are fighting the best they can to survive each day with a smile on their face and joy in their heart. They do not take each day for granted but enjoy each day to the fullest because they have learned to appreciate each day they are given to survive. They are the warriors in this disease.
I walk for those who have passed on. This year alone, I have known of at least ten people who this disease has overtaken. There are many more that I do not know, but the sad fact is that this disease will consume many more loving people before their time. Those who have passed on are the inspiration to me to keep going, and not let the disease win if I can help it.
I walk for those not yet diagnosed. So many times it takes YEARS before a diagnosis can be made. With more awareness and assistance, we hope to cut this time down so patients can get the life saving treatment they need sooner rather than later. In some, this difference can mean life or death. It is vital to shorten this time!
I walk for those in such pain that they find daily living a challenge. Why must we feel bad when asking medical professionals for help in pain management? I truly believe that if more men had this disease, pain management would not be an issue. More women have this disease and as such, pain management can de a daunting challenge. We deserve to live as pain free as we can. We are not asking for something to get high. We are asking for medications that can help us to function on a daily basis as normally as possible. Why do we feel like drug addicts when we ask for help? Medical professionals need to understand that this is a chronic, incurable disease that can come and go and when we are in need of help, please give us the help we need. It is a small thing to ask for yet it is often a challenge because of the laws and the feelings of each doctor.
Finally, I walk so that others can be educated on this disease. Awareness is a key to funding, earlier diagnosis, treatment, and research. The more people realize that lupus is out here and more prolific that many diseases that have a higher profile, the more help we will get. Please take a few moments of your time and read about lupus. Talk about lupus. Join the LFA. Become proactive. For those of us with lupus, we need your help to get the word out. The normal people out there are the ones who can take the ball and run with it. They have the energy and time to be able to help those of us who can’t. Please go to
www.lfa.org and learn more about it.
If we can help just one person, will that not make everyone feel better? Join our cause and see what one person can do. The walk is just the tip of the iceberg.
On a personal note, I am proud of my granddaughter, Audrey, who has walked the walk since she was 3 years old. She WALKS and has raised money each year to help her meemaw. That, my friends, is love.
The Ride is Getting Bumpy
I was online earlier tonight talking about how much I have been getting done since I am back on prednisone. I was so happy. I have been accomplishing many of the things on my to do list. I really need to do these things because we are in process of moving into our house and selling our travel trailer and golf cart. A lot of things on my plate. Yeah, I have pleurisy and/or costochondritis. Yes, it hurts. It is getting better each day though. Yay!
Now for the rest of the story… not long after I bragged about feeling good, the pendulum swing changed direction and I was forced to rest in my recliner. I am having pain in my hips and my back. Calcium sucking prednisone is depleting it as I write this.
I guess the biggest thing that has happened is that I saw what I used to be like. These past few days I felt like I should be feeling for my age! I was able to do things that normally take me forever, and do them fast and efficiently. It is sad to realize just how much this disease has taken from my life. I know once I am off the precnisone, things may return to the way they were previously. It is depressing to think about after this glimpse of normalcy. I hate you so much wolfie!
How cruel it is to feel good and enjoy it only to have it taken away again. Yeah, I really am not wanting to go back to that pain and feeling like I am not a whole person. I like being able to get out of the chair and walk into the kitchen and washing the dishes (by hand). I have cooked and cleaned. I have packed and unpacked. I have enjoyed being outdoors watching hubs working on his car. I mean, I was normal. It was great!
I do know the old things are coming back to taunt me after these great days. How do I know you may ask? Because I am in pain now, while still on prednisone. The boomerang effect is occurring. This false sense of well being that prednisone gives me always has a backlash in the end.
I do not think I am the only one this happens to. I have talked with others with this disease and they have had similar experiences as well. When you taper from a high dose to the smaller doses, your body does this boomerang. You start feeling like crap again. You want the higher dosage so you feel good again. It is a cruel thing indeed.
Everytime I am on prednisone, I gain weight in my stomach and face. I get the moon face. I break out in a malar rash (not sure why), and I am one moody person. Despite these not so nice side effects, I like this feeling of well being. It is a sad thng indeed to want to look like a freak and feel good. It is an exchange I guess.
As I go from this high dose back to reality, I hope I can be gracious and kind again and deal with all that comes my way. I will continue this journey and I hope I can do that with dignity and grace. Keeping my head up and fighting the wolf! I may have lupus but lupus will not have me!
Really? No way!
The title says it all tonight for me. I just should not be surprised anymore and yet I still try thinking positive about you wolfie. You are starting to tick me off good and proper. I will win this round so watch out!
I will be seeing and/or talking to two of my docs tomorrow. The reason? Wolfie is acting up in a different way. For the last couple of days, I have felt pain in my right side up around the bottom of the shoulder blade. The pain radiates from back to front, in other words, I am hurting all the way through. It is maddening. I mean, come one now, give me a break here… this stupid flare is going on strong with no end in sight. Now this happens!
To the best of my knowledge, there are several possibilities on what it could be. One, pleurisy (not fun and hurts really bad). Two, kidney infection (which depending on how the kidney is involved may mean chemo again). Three, costochondritis, a nasty condition that is quite painful. None of it is good.
So, I will try to get on here and post what I find out tomorrow. In the meantime, I am trying to rest and keep my mind off the pain. Yeah, well, it hurts but this will pass once we know what it is.
Stupid wolf!
Have you ever wished to just once wake up and feel normal? I do and lately it has been hard. My joints are all hurting really bad. My migraines are clustering again. Now, on top of all the regular gripes, it seems my left lung or kidney is now hurting really bad. I am not sure which it is, it could be either causing the severe pain, however I suspect it to be the lung because it hurts when I inhale air. I have one more issue but do not want to share it until I know more.
Have you ever wished the pain would go away? I have. More so lately than before. I think I am in a new threshold of pain and it frightens me some. I mean, I am not afraid die, quite the contrary. I just hate living with all this pain. Yeah, I know, pain makes us stronger, but I am really tired of being strong, I need to relax and enjoy life instead of sitting on the sidelines watching life go by.
Ok, I might be a little depressed as well. Wouldn’t you be depressed if you woke up to painful joints and swollen lymph nodes and a myriad of other stuff? Never ever take for granted good health if you have it. I pray no one has to feel this way. It is amazing how much you have to suffer just to get by. Well, I am not going to take it and the big bad wolf can just go hang. I am bigger than the pain, although it is pretty bad right now. I will get through this. I’d better.
If the pain persists, I will go to the ER. Simple plan. Hope I don’t need it!
More, Again? Really?
This post is yet another in the long lost of things that have gone wrong for me lately. I am telling this because I am wanting others who are “normal” to understand how a simple thing like a cold can become something even more menacing when you have an autoimmune disease.
It started out innocent enough, just a cold. I don’t know where I got it, but I got it and it wasn’t that bad, at first that is. My husband got it and so did my mother-in-law (who lives with us). This is where the similarities end.
I began to have a fever and chills, sore throat, body aches, ear aches, headaches, swollen lymph nodes in my neck and under my arms, a non-productive cough, tons of sneezing, my face began to look like a malar rash was coming in, and my face was swollen from the sinuses being so full, and a tightness in my chest. I could not eat, felt worse than I normally do, and was basically laying around.
This happened over the weekend so I did not call the doctor, but I tried home remedies that I have used over the years to help me muddle through it. I made honey and lemon tea (I wish I could have gotten some good whiskey but it was not happening), I kept hot or cold packs on my head and face (depending on whether I was hot or cold I used the opposite), I used my neti pot more frequently, I made sure to keep hydrated, and I used my nebulizer for the dry cough.
A couple of days into this and I felt better and thought the worst was over. WRONG! I had a brief reprieve for a day then back into the abyss again. This was on Monday so I broke down and called my rheumy. He ordered me prednisone to help me get on track quicker and prevent the flare I am in from getting worse and to keep me from pleurisy (which I can get easily with these things happening). I then talked to my family doc who ordered me some antibiotics.
It has been two days since them and I think the corner is getting turned. I got out into the cold and snow to go to the store with my hubs. It was hard to do since I am still hurting, but I did it. I am not patting myself on the back, just stating a fact.
On to the next thing… can you believe that there are people out there who actually think I was being a BABY about a mere cold??? That is why I posted the posts about lupus and the flu in an attempt to educate so others will not open their mouths and insert their feet. I mean, come on, if I can live in pain for most days, why should I gripe about a mere cold? If it is overriding the pain I normally feel, then listen up! I am in PAIN and I AM SICK! My lungs get weak quick ( I have asthma) when I get these bugs and it is not something I can buck up and get over!
It really burns me that there are people out there who think I am being a baby. I say, if you have not walked in my shoes, then tread lightly and do not impose your limited medical knowledge on me. Believe me, if I could, I would “get over it”. I would love to walk in your shoes and have the energy to get all I want done. I would love to be able to have a mere cold and not be any sicker. I would love to not lay in a recliner or bed on the days when I am the most sick. I would love to work again!
The truth is that I cannot do a lot of these things anymore and if you need to put me down with your snide remarks and innuendo to make yourself feel better about yourself, then take a long walk off a short pier please and leave me alone. I cherish the real friends I have around me and I do not need anyone who has to be mean to others to elevate their own stature (at least in their mind). It is petty, small minded and just plain ugly to treat others with so much disdain that you belittle their illness and them and then can go off and laugh later thinking you were so clever.
I hate to break it to you but the truth is, you really make a fool of yourself because others can see through you and actually feel pity for you, because you cannot or will not ever understand the feeling of empathy. I feel sorry for you too.
In the meantime, I will deal with each bump along the way and I am so thankful that I am here for today! Little things are big things to me! I am blessed int hat I have dear friends who genuinely love me,and I do not need the pettiness.
I think when I am sick these things hurt me more than when I am feeling better. I apologize for the negativity. Sometimes, I just have to get it out or I will explode.
I hope everyone is safe and warm and dry out there! Thanks for letting me vent!
Wonderfully Me
I seem to be quick about the negatives in this journey with lupus, but for today, I want to share some good news. For two days now, I have been on a new medicine and for two days I have felt like a totally different person. I feel alive! I have energy! I feel light!
See, I told you…good news indeed! I am finally feeling wonderfully like me!
The reason for this is I had my appointment at the pain clinic and they are addressing the oppressive pain I have been dealing with and working on a plan of action to make me feel better. The first step is the new medicine I am on. The second step is a tens unit to target my pain and the third step is massage therapy. Who knew?
For those of you who are not aware, I have been virtually bed bound for some time now. I only got out when I had to, like doc visits and grocery. Even those were hard to do because of the overwhelming pain. Some days all I did was get up for the bathroom and the rest of the time was spent in bed. Not sleeping, just laying or sitting and unable to do much but feel bad. It is not a nice way to live.
I never wanted to see a pain doctor. I had heard all the bad stories about pill pushers who serve the addicted population and that only addicts went there. It took one strong willed lupie sister to talk me into going. Ok, scratch that, she threatened to come to my house and make me go if I didn’t make an appointment myself. I am so thankful for friends like that. She cared enough to do that and make me go into uncharted territory for me. I was way out of my comfort zone here.
I never wanted to go because in my mind, those who needed those things were weak and unable to be in control of their lives and take charge of their pain. I was taught growing up that you overcome pain by sheer willpower and grit. Well, how did that work out for me? I was reduced to being in bed most days because of the pain I was in.
When I finally got my nerve up to talk to my rheumy, he gave me a pain med that did nothing for my pain. After my friend and several other lupies I had talked to told me their stories, I decided to make the appointment. I kept the appointment and wow! why did I wait?
You see, I had done research and even posted articles on this blog about pain management. I was a fraud though, because even though I acknowledged that others needed stronger pain relief for a better quality of life, I would not do it myself because of these thoughts in my head I mentioned above. It is like saying “For you it is great but I am not that much in need”. WHAT!?
When your quality of life is impaired to the point that you are almost completely bed bound, how much lower do you want to go? So, I am here to say….if you are living in pain, get help! Do not think like I did and do nothing. I mean, unless you enjoy being in pain.
Some are fortunate enough that their doctors will help them in pain management. Others may have to seek out a pain clinic for their relief. The bottom line is how bad do you hurt? Today, I can honestly answer that even though I still have pain, it is in the range that I can function and get out of bed and do things! It is still there, just not as bad as it was.
I am thankful for those who gave me their honest input and lovingly pushed me to do this. Thanks is not enough! They have helped me to be able to live better, love much and give to others. The gift of these friends is immeasurable. Thank you all and you know who you are!
BBW… I already paid!
Today, I decided to go with my hubs to look at a truck. You know, you can only hibernate for so long and then you want to go out. Granted, it is exceptionally cold, but I bundled up and hoped for the best. The car deal did not happen, but by then the damage had been done.
As the title implies, the BBW (or big bad wolf) has decided that the flare I am in is not enough and is making sure I pay for going out into the cold. How? My knees and feet are so painful and my fingers are not much better. I feel a cold in my bones that I have not been able to chade away yet, and I have been in for hours! Yes, he is making me pay and he has taken all my credit cards, checks and valuables with him!
This so totally sucks. I knew going out in the cold could make things worse, but I also hoped for the best. I am an optimist at heart, you know the type, always tries to see the bright side of things, and I cannot find it here. The bright side is filled with pain and chills. How did that happen?
Oh well, that is my rant for today… hope everyone else is warm, and pain free!
Winter has arrived
I must confess that I have thoroughly enjoyed our Indian Summer this year. Now that it is December, the cold arctic air has arrived and snow along with it. The beautiful white fluffy flakes have been falling off and on for two days now. The roads have not been bad, considering it is the first snowfall of the season.
I ventured out yesterday to pick up a few groceries. Most normal people do not think twice about getting ready and heading out, even in bad weather. I got dressed and put my coat on and headed out. I got to the grocery and while I was shopping, I began to experience pain in my legs, specifically in my knees, ankles and feet. After checking out quickly, I headed back home.
I arrived home and immediately took my pain medication (the one that really does not much). I was a total grouch too. I seem to be a grouch when I am in pain. At least, that is what my family tells me. I recognize it as well. After what seemed like a long time, the pain began to subside somewhat.
I posting this because it shows how I can feel decent one moment and in a short time, feel intense pain in my joints. The pain was triggered in part by the cold air I had been in. I have found when it gets cold, my body rebels and causes pain to occur.
My story is not unique. Most of us lupies experience more pain and flares in the winter, and it seems that the colder weather does trigger the flares and pain. This is the time of the year I call my hibernation period. I call it that because I do not get out much, and actually go out of my way NOT to go out. It is the only way I can feel like I can control my pain.
On the plus side, this last week I had my yearly eye exam and it went well. I have a new rx for glasses so I have to get them soon. The cataracts are still growing, but they are not as invasive as they could have been. Whew! Unless they get worse, I do not have to go back for one year! I go once a year because of the medication I am on, called plaquenil. It is an anti malarial drug which can affect the eyes when used long term. I have been on this medication for ten years or more now. To prevent the possible side effects, I have to go once a year and do several tests just to make sure all is well.
Next appointment is with the pain clinic for my first visit and then I also have an appointment to see the orthopedic surgeon about my knees. Finally, I will see my surgeon that takes care of my stomach. This month is the month of doctors. The good news is that once it is over, I should be cleared again for a few months at least.
When you have a chronic disease like lupus, you develop a “team” of doctors who take care of various aspects of the manifestations of the disease. I personally see my family doctor, a neurologist, a rheumatologist, a surgeon, an orthopedic surgeon, and my opthalmalogist. On the periphery are my other doctors, which I see as needed. One is my cardiologist and another is the gastroenterologist.
Well, in the meantime, I will update as I go through all of these. I am hoping to have more survivor stories soon from some of my friends. It is my hope that even if it helps and encourages one person, it will be worth it!
Wolfie we are gonna fight!
I am having one of “those” days. It has been rough trying to be as normal as possible and my treacherous body is not cooperating with me at all. The big bad wolf has decided to rear its ugly head again. My lymph nodes are swollen in my neck, and my face is puffed up on the left side. My hands and feet are swollen. My joints are hurting and a migraine topped off the day for me. This is getting ridiculous I tell ya.
I am beginning two new meds this week. One is topamax for my migraines, and the other is cymbalta for my depression and my rheumy said it would give me some pain relief as well. I need some relief for sure! I am sick and tired of being sick and tired… and winter is just beginning so the pain and suffering almost always gets worse in the colder weather.
Well, I have vented and hope it helps me feel better… sorry for the negativity but it needs to get out of me so I can clear my mind and feel better. Hope everyone has a pain free day tomorrow and every day!
