Hello once again!
As the title implies, this post is about priorities and listening so they can be placed properly. I have been quite depressed as of late. My lupus is really ugly right now. I am having major issues with my gi tract from top to bottom. I am dealing with drama within my family. I am back on prednisone. Basically, I cannot eat well, cannot sleep well, and am a round moon face sicko.
I had a bright spot yesterday I thought. My rheumatologist wants me to start Benlysta infusions. I was in the drug trial with real drug and it helped me a lot. Once it was approved though, the drug trial ended. So, he wants to do these infusions to try for remission. Remission is a word I have not heard for years!
Back to the story. My rheumy’s nurse called and said she had done the legwork and for me, my insurance would only cover these at an 80/20 ratio. In other words they would pay 80% and I would pay 20%. Ok, what does that mean? It means it is cost prohibitive for me. However, she next tells me that my 20% equals $250 per transfusion. Still cost prohibitive for me. Now she tells me that there is this gateway program that will pay for the med itself. So, I only have to pay the office visit ($40) to begin infusions and as for the $250, I can be billed and pay as I can! Wow! That is great news! Finally it is looking like I might get some type of relief from this all pervasive pain!
So, I decided to share this good news with my husband. I didn’t even finish the details before he exploded and told me that there is no way we can afford this! He also told me to cancel finding out about any thing else related to this! He told me I was wrong to even consider it. Seriously! He said it would be another bill and that we cannot take this on.
He stormed out into his garage room. I was numb. I really was in pain emotionally now. I thought why try anymore? You know, if I had cancer would he do the same thing about a med? Is he really so self centered and blind that he cannot see or comprehend how insensitive he was? The answer, sadly, is yes. I saw a new side of him yesterday. It is a powerful revelation.
I have been here to help him overcome HIS issues and done whatever was necessary to make sure he gets care he needs. You know, the Golden Rule. I saw yesterday that no matter how much I give he will only take. He truly does not seem to care about any of my issues at all. He went so far today to say he didn’t want to hear anything about my call to another doctor regarding a different issue. Guess I know where I stand.
A friend of his passed away yesterday afternoon. (This was after our conversation above had occurred). Now today, he told me his friend isn’t having s funeral. His wishes were to be cremated and his wife was to hold a sort of wake. My husband, the recovering alcoholic, told me he was going and would have a drink for his friend! Wow! It is almost like he was waiting for an opportunity to drink. He assured me he was going to stay sober but only have that one drink. Uh huh, right. He might delude himself but I have seen this behavior before. I tried to reason with him about slippery slopes and how he was all but dead himself a month ago. He refuses to listen. Well, I tried.
I came back here with assurances of sobriety and caring for my well being. Bait and switch. Jokes on me. Bad day. Sorry to bring anyone down but this is my reality right now. I will survive. I will have to go on chemotherapy if Benlysta is off the table. Oh well, I actually want to live so we will see how this plays out. I am just so sad to see and hear how my issues do not matter to him. Actions speak louder than words so if his words match his actions then I am alone on this painful island. Well crap.
As I stated previously, I had a colonoscopy done a week ago on Monday. Things did not go as I expected. Not to rehash but they found four polyps, three of which were benign and small and one which was questionable and 3 cm in size!! I got worried.
Now as a lupus patient, it is not wise to get too worried, but I wanted to be prepared in case it turned out to be bad news. You know, think the worst and hope for the best. Uh huh. I did just that. I scanned the internet for colon cancers and what a malignant polyp looked like. I checked out treatments for cancer. Basically I scared myself to death. Whew! Job is now complete.
I went on Monday for my follow up appointment. My gastroenterologist told me that the big polyp was a type of precancerous cells that is fast at changing to cancer. It could have been worse had I waited much longer to have this procedure. He said he feels sure he got most of it out. It does not warrant another procedure for one year. No more than one year. If I have any issues before that, we will decide how to proceed sooner. In the meantime, he is double checking the tests that were done, along with the hospital records to make sure al is well and we can wait. Whew!
Crisis averted for now. So, now I am feeling a little more relaxed and not so stressed. Thanks be to God! I wanted to share this good news with you all because I am prone to share bad new easily enough so good news should be shared too! Thanks for the prayers!
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
I saw my new gastroenterologist the other day. Since I have been having so many issues with my colon, I knew I needed to see someone so my new family doctor referred me to this new doctor. He was awesome! He had us schedule a colonoscopy for the first part of April, hopefully by then these issues will be resolved enough to do it.
I feel so much better after seeing this doctor and I am so glad to add him to my team of doctors! My appointment was for 2:30 pm, I got there at 2:25. I was checked in and filling out forms and then called back to the room. The nurse was thorough and very nice. The doctor was amazing! Afterwards, I paid, got my instructions, and left. It was now 3:00. WOW!!! I love how these doctors value my time as much as their own! I like this new trend in medicine.
So, one major thing down, a few more to go. I still have eto see my new gynecologist for checking out that mass on my ovary. I am seeing my neurologist Friday. I see my surgeon next Thursday and the the following Monday, my rheumatologist. My ducks are lining up quite nicely.
Thank you all for your continued good wishes and thoughts and prayers. Things are on the upswing now! I am being proactive and hope things turn out well. I have a lot more living to do, a new grandbaby coming, and plans to do much more!
After the sadness of this week, it was great to finally hear some good news! I thought I would share it with you all as well. My cousin Trish found out she is officially in remission from her stage 3 ovarian cancer! Yee hawwwwwwww! Woot woot woot woot!
My cousin you see, is the mother of 18 children. Not all are hers biologically. She and her husband foster and most of the time, adopt those they foster. They specialize in teenagers. Their house is a constant ebb and flow of young people, either doing chores, or watching tv, or talking on their cell phones and well, you get the picture.
She is a very special person and has changed so many at risk teens into upstanding citizens that have security they never had by living in her home. She gives them love, lots of love, and responsibilities, morals, values and well, love. It is so amazing to meet these kids and get to know them and in no time, they are my “nieces and nephews”. I say that because in our family, any older person who is a cousin or whatever is called Aunt or Uncle out of respect. My running joke with each of the kids is that I tell them each that they are my favorite. It is our gag we say and they love the teasing.
These kids come from troubled homes and for the most part have had little or now security and stability in their young lives. They transform over time into these lovely young people who finally are getting what they needed and blossom as a result.
Back to Trish though, I believe that the fact that they have all these kids,is why she fought so hard and is in remission today. She has so many reasons to stay here. I believe those kids anchored her here by loving back in the face of scary times.
My cousin Trish is an amazing woman. I love you Trishie, my MUCH older cousin! (inside joke, she is 3 months older than me and right now is the three months between so she is older than me!) She and her husband Charlie are truly inspiring to those around them by living their lives in such a special way.
By the way, I should mention that all of those kids are not living at home now. Many are grown and have moved on to pursue higher education, get married, having their own kids and so they only have nine at home right now. However, they all come back home to Mom and Dad for frequent visits and get togethers.
It is that time of the year again, the time when the weather cools at night and the air is filled with the scents of fall. It is a beautiful time of the year! I love this time of the year! Unfortunately, my body doesn’t like it. The cooler weather triggers flares in many lupus patients. I am one of those patients.
As most of you know by now, I am in a major flare. Fully. I have joint pain, fatigue, blisters in mouth and nose, malar rash, and feel like poo. I called my rheumy and he called me in the poison I hate. Prednisone. Yes, it can work miracles, especially for us lupies. I just hate how my body responds to it. For the first two days, I was still miserable. Days three and four led to a flurry of activity as the prednisone kicked in and the adrenaline kicked in too. Of course, with the increase in activity, it also brings setbacks in other ways.
My body reacts to prednisone in a variety of ways. I almost always get the malar rash breakout when I first start it. Next comes the MAJOR hot flashes! I mean MAJOR! No sleep is another one. I get back spasms too, dunno why for those. Now add in intense itching, extreme hunger and insomnia, and well, you get the picture. Sure, it helps me fight lupus! It gives me energy and shows me how I can feel good sometimes. The minuses are many though and I hate this medication!
Alright, I know, it is a miracle drug that keeps many of us lupies alive. I understand that. I just wish science could find some other medication that does not have so many side effects and yet can stop a flare in its tracks! Until then, we have to get the different poisons, aka medications, and pray for the best.
I am thankful for the meds because seriously, they do help stop the major effects of this disease. The drawbacks come in the form of osteoporosis and others. I know this personally.
So, I have been MIA for a bit because I am either tearing into a project with this energy from the prednisone, or I am sleeping for 24 hours catching up. Such is life in the life of a lupus patient.
I got these questions at http://www.lilaclane.com/relationships/emotional-abuse
An abusive partner will railroad discussions, so that you don’t have time to think about what’s right and what’s wrong in their behavior.
Take a moment to consider these questions. Your partner might have behaved as though these things were okay, even though it’s obvious that they aren’t okay…:
Do you feel that you can’t discuss with your partner what is bothering you?
Does your partner frequently criticize you, humiliate you, or undermine your self-esteem?
Does your partner ridicule you for expressing yourself?
Does your partner isolate you from friends, family or groups?
Does your partner limit your access to work, money or material resources?
Has your partner ever stolen from you? Or run up debts for you to handle?
Does your relationship swing back and forth between a lot of emotional distance and being very close?
Have you ever felt obligated to have sex, just to avoid an argument about it?
Do you sometimes feel trapped in the relationship?
Has your partner ever thrown away your belongings, destroyed objects or threatened pets?
Are you afraid of your partner?
I am writing this post while I have so many things on my plate. I need to get the house in order for the upcoming winter, and from what I have heard, this house is horrible for drafts and cold. A previous occupant told me she would get up in the morning and open the oven, turn it on, then lay back down until it heated it up enough for her to get dressed for work. Yikes! Now, that being said, I do not truly know what it will be like but hey, gotta place to live so I cannot complain. I will get a couple of those little heaters to help out. I am also thinking of getting hay bales to put around the exterior ground level of the house to help with insulation. You see, the house is kind of rotting around the ground level from mold and rot due to not having the proper spouting leading the water away from the foundation. Yes, as you can tell, this is an old house. Ah well, I will deal with it all in my time frame.
Now, another thing on my plate is getting my finances in order. I have worked out a budget that, while tight, is going to get me what I need. No wants but needs. I can deal with it. The peace is wonderful and worth it. Just going to be living simply for the next bit but in the end I will be debt free and able to live better on my own.
On the negative side of things, my lymph nodes are swollen in my neck and I have blisters in my mouth along with severe pain in the joints. This is otherwise known as a major flare beginning. My rheumy is calling me in steroids to help combat this before it goes any further. I hope it helps. Daggone it though, I just lost all that weight and now will most likely gain some of it back. Well, I guess that is better than the pains of lupus.
I have been getting to see my kinds and grandkids so much more lately and that is a blessing. I admit that it has been so wonderful seeing them more often and getting to be a major part in their lives.
I am still dealing with my grief on losing my doggie Savannah. She is missed so much and yet knowing she is not in pain anymore makes the blow a little easier to accept. It will get easier over time but right now it still is a bit raw.
I will be posting my big shopping adventure tomorrow and show you all my freebies I got!!! Retail therapy does help me out…lol…
Hope you all are pain free and happy and enjoying the change of seasons in your area!
I decided to make this post so you all could share your stories of your journey with these autoimmune diseases. I honestly think that by sharing, it helps us in the day to day, knowing there are others that are dealing with the same issues. So, please share your story by commenting on this post. I think it will help our community bonding and each of us personally. Thanks! ~Jen
I just posted this as my facebook status because, well, I heard there are those who are questioning my doctors in the care they are giving me. So, in the spirit of letting them know how I feel, here is my retort:
Ok, this is for the people who think I should not take so many medications and that the medications are the reason I am so sick, well, think again! When you get a medical degree and can tell others what they should take, then I will listen to you. Until then, I prefer my specialists like a neurologist, an opthalmologist, a rheumatologist, and others who form what I call my “team of doctors”. Yes, they all share what is going on with my disease. Yes, they all know what meds I am on. And guess what? They all agree to the care I am receiving. So, if you want to discuss my disease and care, please have the decency to call me and get the facts first before judging me! Thanks!
Seriously, that is what I said. What do you think? Too hard on them or too easy?
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.
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.
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.
Part 7 pf this series from the Mayo Clinic website
Tests and Diagnosis
Tests and diagnosis
Peripheral neuropathy isn’t a single disease, but rather a symptom with many potential causes. For that reason it can be difficult to diagnose. Your doctor will need to determine where the nerve damage is and what’s causing it.
Diagnosis usually requires:
- A full medical history. This includes your symptoms, your lifestyle, exposure to toxins, drinking habits and a family history of neurological disease.
- Neurological exam. This may include checking your tendon reflexes, your muscle strength and tone, your ability to feel certain sensations, and your posture and coordination.
- Physical exam. Your doctor will likely do a complete physical exam.
Your doctor may order tests, including:
- Blood tests. These measure various levels, such as vitamin and blood sugar levels; and bodily functions, such as thyroid, liver and kidney.
- Imaging tests. Your doctor may request a CT scan or MRI to look for herniated disks, tumors or other abnormalities.
- Nerve function tests. These may include electromyography — which reads electrical activity in your muscles to determine if your weakness is caused by muscle damage or nerve damage — and nerve conduction studies — which assess how your nerves and muscles respond to small electrical stimuli, generated by a probe and measured by an electrode placed along the nerve’s pathway.
- Nerve biopsy. Your doctor may recommend this procedure to try to determine what’s damaging your nerves. A small portion of a nerve is removed and examined for abnormalities.
Part 6 of this series from the Mayo Clinic website.
Preparing for Your Appointment
Preparing for your appointment
You’re likely to start by seeing your family doctor or a general practitioner. However, you may then be referred to a doctor who specializes in nervous system disorders (neurologist).
To make the most of your appointment time, it’s good to arrive prepared. Here’s some information to help you get ready for your appointment, and to know what to expect from your doctor.
What you can do
- Write down any symptoms you’re experiencing, including any that may seem unrelated to the reason for which you scheduled the appointment.
- Make a list of all medications, vitamins and supplements you’re taking.
- Ask a family member or friend to come with you, if possible. Sometimes it can be difficult to remember all of the information provided to you during an appointment. Someone who accompanies you may remember something that you missed or forgot.
- Write down questions to ask your doctor.
Preparing a list of questions can help you make the most of your time with your doctor. For peripheral neuropathy, some basic questions to ask your doctor include:
- What’s the most likely cause of my symptoms?
- Are there other possible causes for my symptoms?
- What kinds of tests do I need? Do these tests require any special preparation?
- Is this condition temporary or long lasting?
- What treatments are available, and which do you recommend?
- What types of side effects can I expect from treatment?
- Are there alternatives to the primary approach that you’re suggesting?
- I have other health conditions. How can I best manage them together?
- Do I need to restrict any activities?
- Is there a generic alternative to the medicine you’re prescribing?
- Are there brochures or other printed material I can take home with me? What websites do you recommend?
Don’t hesitate to ask other questions that occur to you.
What to expect from your doctor
Your doctor is likely to ask you a number of questions, such as:
- Do you have any underlying health conditions, such as diabetes or kidney disease?
- When did you begin experiencing symptoms?
- Have your symptoms been continuous or occasional?
- How severe are your symptoms?
- Does anything seem to improve your symptoms?
- What, if anything, appears to worsen your symptoms?
Part 3 of the series on this subject from the Mayo Clinic website.
It’s not always easy to pinpoint the cause of peripheral neuropathy, because a number of factors can cause neuropathies. These factors include:
- Alcoholism. Many alcoholics develop peripheral neuropathy because they make poor dietary choices, leading to vitamin deficiencies.
- Autoimmune diseases. These include lupus, rheumatoid arthritis and Guillain-Barre syndrome.
- Diabetes. When damage occurs to several nerves, the cause frequently is diabetes. At least half of all people with diabetes develop some type of neuropathy.
- Exposure to poisons. These may include some toxic substances, such as heavy metals, and certain medications — especially those used to treat cancer (chemotherapy).
- Infections. Certain viral or bacterial infections can cause peripheral neuropathy, including Lyme disease, shingles (varicella-zoster), Epstein-Barr, hepatitis C and HIV/AIDS.
- Inherited disorders. Examples include Charcot-Marie-Tooth disease and amyloid polyneuropathy.
- Trauma or pressure on the nerve. Traumas, such as motor vehicle accidents, falls or sports injuries, can sever or damage peripheral nerves. Nerve pressure can result from using a cast or crutches, spending a long time in an unnatural position or repeating a motion many times — such as typing.
- Tumors. Growths can form directly on the nerves themselves, or tumors can exert pressure on surrounding nerves. Both cancerous (malignant) and noncancerous (benign) tumors can contribute to peripheral neuropathy.
- Vitamin deficiencies. B vitamins — B-1, B-6 and B-12 — are particularly important to nerve health. Vitamin E and niacin also are crucial to nerve health.
- Other diseases. Kidney disease, liver disease and an underactive thyroid (hypothyroidism) also can cause peripheral neuropathy.
Continuation of the series on periphreal neuropathy from the Mayo Clinic.
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.
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:
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.
Well hello one and all! I am back after that brief hiatus. I basically had to wait until I got my internet fixed. It is hard, although not impossible, to blog from my phone. I have done it, but I don’t have to like it…lol.
On to other topics now. First is my latest neurologist appointment. It was not good news. My lupus is attacking the neurons in my brain and causing me to have neuropathy that has spread quite a bit. So much so that I was advised to use a cane while walking now. I was also told to wear shoes at all times. The cane I do not mind so much because I have had to use it before. The shoes are an altogether different story.
You see, I am a barefoot loving country girl. In summer, spring and fall I hardly ever wear shoes at all! I wear footies around the house if I wear anyhting. Well, now that I think about it, the same goes for winter too. The only exception is when I have to go out in winter and for that, yes, I do wear shoes. (DUH!) You could say I am a natural footwear girl.
This having to wear shoes thing, although a necessity now, is also a fundamental slap to the way I live!! I hate shoes! They are torture devices for my feet. Now, as a result of this change in my body, I am forced to wear the things I detest. I know, I should just be grateful that I am alive but to me, this is not a good thing.
Also, we discussed the continued spread of the neuropathy and what would occur and the changes in my life that it would bring. Basically, my neuropathy cannot be contained like in diabetes, because the lupus is what is attacking my neurons in my brain so the disease is in the drivers seat on this one. That is bad news. I was also informed that if this continued its path, I would be in a wheelchair because the numbness will necessitate it due to balance and coordination issues. Let’s not even discuss the injury subject. Suffice to say that I want to keep all my parts and not need any removed.
I have waited a week to put this out here because I have had a lot of information to digest. I have had to mourn the loss pf sensation and its rapid spread. I have mourned the potential loss pf my mobility. I have had to realize that lupus is in control on this thing and I am a mere pawn in its path. Not pretty is it?
I am in process of finally getting unpacked in my new little home. I can see the end in sight. I can finally relax a little and actually enjoy the peace and quiet. No guilt trips, no manipulations, no temper tantrums, no ugliness (other than me that is). Ahhhhhh, home sweet home at last!
Oh, I forgot, I also am having an EEG of my face and an MRI of my neck to rule out any organic cause for my parasthesia in my face. What fun! I have more to report but will save it for another day. Hope you are all healthy and well. Keep your feet on the ground and your head in the clouds!
I got this information from the website http://members.shaw.ca/tiderington/cnslupus.html
FYI *Re: Lupus Cerebritis and Cerebral Vasculitis*
In addition to headache, NP-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.
The diagnosis is not always straightforward.
Although there are no “definitive” tests for CNS-lupus, there is a type of brain scan called a “SPECT brain scan” that may be positive even when an MRI brain scan is normal.
NP-SLE is extremely variable.
Further confounding the ability to diagnose NP-SLE is the fact that a patient may develop a psychiatric illness as a consequence of having lupus without having NP-SLE.
Also, certain therapies may produce psychiatric disturbances.
As the therapy used to treat patients with SLE can cause psychiatric problems, it makes it very difficult for the rheumatologist to decide if the patient is suffering from primarily NP-SLE, reactive depression or the side effects of steroid therapy.
It is usually necessary to rule out other conditions that may mimic central nervous system manifestations of systemic lupus erythematosus, including infection and toxic metabolic states.
The rheumatologist has a battery of diagnostic tests and procedures which can aid him in making the diagnosis of NP-SLE.
To put this in the proper perspective, a patient who has multi-organ involvement and signs of severe NP-SLE, such as seizures, strokes, etc., can easily be given the diagnosis of NP-SLE.
For such a patient, the rheumatologist is confronted with the difficult decision of determining if the headaches or anxiety are truly caused by NP-SLE.
TREATMENT of CNS-SLE
Since the indications of NP-SLE can vary from very severe to mild symptoms, should all patients with NP-SLE be treated with steroids, irrespective of the intensity of the disease activity?
Patients with central nervous system manifestations of lupus erythematosus who present with organic brain syndrome or coma can be treated with intravenous methylprednisolone pulse therapy.
Conclusively, individuals with major manifestations of NP-SLE require aggressive therapy with high dose steroids and perhaps immunosuppressive drugs, plus other appropriate treatment such as anti-seizure medication.
But what should be done for patients with minor manifestations of neurologic and psychiatric NP-SLE?
The study of NP-SLE is still in its infancy, but certain strides are being made.
This information is from the NINDS website.
NINDS Neurological Sequelae Of Lupus Information Page
Synonym(s): Lupus – Neurological Sequelae, Systemic Lupus Erythematosus
Table of Contents (click to jump to sections)
Is there any treatment?
What is the prognosis?
What research is being done?
Additional resources from MedlinePlus
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.