Doctors Are Not Gods! Don’t Let Them Treat You Bad 

1 Jul

  
Here’s Your Sign Every Bad Doctor 

Okay before you get offended or think this is mean hear me out. I’m writing this as I’ve been struggling all day with my health and crying in pain. I’ve been struggling with my health since I was a baby. In all of those years I have only met a few doctors who actually cared or showed compassion. Doctors take an oath to help all their patients who need help yet I find that instead of helping, most of the time they make things worse. 

I’m laying here sicker than usual and it crossed my mind about a doctor visit a year or so ago. It was an immune doctor at UC Davis who not only belittled me but he was a jerk during the visit and when I went for the follow up he canceled last minute while I was in the waiting room knowing I’m home bound and it took a lot for me to make it to that appointment. When I asked why he canceled 10 minutes before my follow up his personal nurse said “please come with me down the hallway (knowing what she was about to say would piss me off). 

The nurse said “Dr. N (N stands for neglectful but it’s also his real initial because I don’t care who knows) told me that he does not believe you have any of the illnesses you claim or in your records and that over the past 30+ years all of your doctors diagnoses were wrong”. I said “wait so you are telling me my 40 or so doctors over the years from Sutter, Kaiser, Northbay..etc are all wrong and my positive tests, MRIs, x-rays eye are all false?!!”. She said “that is correct he looked at your immunization test and he thinks all you need is a shrink, he said you don’t have lupus, CFS, Lyme, FMS, POTS…etc but rather it’s all in your head”. So by one immune test (that wasn’t normal it showed my immunizations never worked because I have no/weak immune system) he can tell all that? “Wow he must be some kind of God”!! I said sacastically, followed by a “tell that doctor to retire and to go F himself” as I walked out. 

I’ve learned over the years that doctors only care for those patients with physical wounds they can treat and a nurse even confirmed that one night in the E.R.. I’ve had doctors tell me straight up “I do not want to be your doctor or help you please move on” after meeting them for the first time. Not because I said anything wrong because most of the time I don’t even talk but because he read in my chart “chronic Lyme disease”. Doctors refuse to believe ticks can get out of the east coast and it baffles me that someone who went through school that long can be that stupid. It’s funny when the patient has more education than the doctor. I love to study and learn and was a computer programmer among many other things and almost a police officer before Lyme took my body away from me so I don’t take crap from any doctor and I know more than they think I know. 

I just wanted to share this because I know every week somebody is going to an appointment and coming home crying because the doctor made them feel stupid or crazy and didn’t even try to help them. Don’t let any doctor make you feel that way doctors aren’t gods most are just crabby assholes. My mom’s doctor once told her “you’re fat you need to lose weight, I’m not fat because I play tennis”. This was from a very popular doctor. That comment still sticks with her and she’s not even fat! That doctor was a short stalky man with a beer gut so I don’t know why he thought he was cool enough to say that. If I was there I would have punched him or threw him around like a rag doll. Lol So don’t ever feel like you are crazy or take the first doctor’s advice, always see at least three to four doctors and if one believes in you then give them a chance. There are good doctors out there but they are rare. Hope this helped some of you who have went through this already and thought you were the only one. I hear these type of horror stories from my Spoonie friends all the time. Next time a doctor makes you feel bad or doesn’t believe your positive test,  just give the doc the middle finger and walk out of there. 

Have Severe Daily Head Pressure? This May Help 

22 Jun

  

Losartan 

I’ve had severe head pressure for as long as I can remember. I get meningitis while on certain meds but I have cluster headaches, migraines…etc. my head feels like it’s squished in a vice and its inflamed. I take quercetin bromaline, curcumin and other anti-inflam meds/supps for my brain. I’ve tried RX migraine meds with no success. I haven’t found a good cure for my migraines except being in the dark with no noise and no cell phone. But my head pressure for the first time in years in a bit better thanks to an RX med. 

My Lyme doctor gave my Losartan 50mg a day for my head pressure. Losartan is for hypertension which I have and always have high blood pressure and “hyper” POTS. So she figured she could help my high blood pressure while really targeting my head pressure. Since this med is for BP your doctor will need to say this is for your blood pressure for insurance to cover it. But this med was specifically given to me for head pressure, make sense? So far my BP has been good and my head pressure is more tolerable. 

If you suffer from severe head pressure I know how hard it can be to think, read, noise hurts the head…etc so it’s debilitating. If you are looking for relief you might want to give this a try. If your blood pressure is on the lower side or normal then this might not be for you. But I know when your brain hurts you get desecrate for anything. This is the first med that’s touched my head pressure so I wanted to share.

Also if you have 20+ year old latest stage chronic Lyme and no meds seem to work…. Minocycline and Tinidazole are the only two that touch my cyst/biofilm form Lyme. Mini kills the Lyme in the brain and is one of the only antibiotics that can pemattate the brain barrier. Tinidazole will make you feel like crap but that’s a sign it’s working. Good luck!

Hydration Is Important With Illness 

14 Jun

  

Stay Hydrated

I cannot stress how important it is with chronic illness that you need to stay hydrated! Especially with summer being here. I have chronic dehydration (intra cellular dehydration). Plus we get dehydrated from our different illnesses and  medications. I have to hyper-hydrate daily as per the doctors orders. Hyper-hydrate means to over hydrate or drink until your are full. Even if I feel full and hydrated I have to drink more. 

Being hydrated is pretty easy to tell. Your urine will be dark yellow when you are dehydrated and as you get hydrated your urine becomes lighter in color. If your urine is clear then you should be well hydrated. Another sign to tell if you are hydrating enough is how frequently you are urinating. Some have urinating medical issues or take meds that can make you pee more frequently so don’t confuse the two. If you frequently urinate from medical issues make sure your urine is light in color. 

I used to urinate maybe once in two days, that’s when I knew something was wrong. My urine was almost brownish but didn’t have blood in it. That when I was diagnosed with chronic dehydration issues. It can make your veins be hard to work with during a blood test or IV infusion. Dehydration can cause all kinds of symptoms but click the link in this sentence to see the list. Look for the signs and make sure you always stay hydrated it’s very important to healing. 

The Sun Is My Enemy – Living With Lupus And Genetic Vit D Issues

14 Jun

  
Lupus, Lyme, Genetics And The Sun

Since I was a kid I remember always hating to go into the sun. The heat from direct sunlight makes me so sleepy, fatigued, lehtargic & my symptoms go crazy. I sweat a lot and my body cannot regulate temperature so it overheats easy. But my body also runs a low core temperature at an average of 94-95 degrees. It scares all my nurses but I’m used to it, I’m always cold and under a blanket and use a ton of blankets on my bed and year-round flannel sheets. If I take the sheets off I get the chills. 

As I got sicker about 10 years ago I noticed one day while out fishing in a boat I had no shade and I was feeling so sick I couldn’t wait to get home. Later that night I had a bad sun burn on my face. A few days later my whole faced peeled off in one big piece of skin and it was thick like many layers of skin. It left a scar on my forehead that never went away. As I got sicker I noticed any UV lights made sicker, even the flourecent lights in big box stores made me sick. I always wear sunglasses and long clothing. 

When I go in the direct sunlight now I can feel this instant blanket of heat on me and I instantly want to lay down and sleep or pass out. I look for the shade and shade hop. Even in heat like a hot store or home with no air conditioning I can’t stay awake or can’t talk I’m so tired. In the sun my symptoms go crazy and I feel like I’m sicker than my normal sick was 1 minute earlier in the shade. It’s hard to explain. So I stay in my house and rarely leave the house. If I go anywhere I make sure there are buildings to go into. 

It’s also very important to have a lot of bottled water with you/me. I bring a giant smart water with electrolytes and regular water with me wherever I go and pain killers are a must. Remember to always stay hydrated even when you feel you are. 

I just saw I TV segment on EPP where people cannot be in sunlight and I couldn’t help but to think those with Lupus or Vitamin D genetic issues cannot be in the sun either. I’m told my body cannot convert normal Vit D or natural D from the sun. So I double hate the sun.  I just wanted to let others know that they aren’t crazy, there are many sun issues where we cannot be outdoors. Stay cool and I’m the shade. 

Human Plasma Infusion (IVIG) 

12 Jun

 

I had my monthly IVIG Infusion.  Everything went well. So far so good and no meningitis or extra cranial pressure. My new meds are doing good so far also. The losartan has my BP almost normal and is helping with the cranial pressure. Just wanted to do a quick update. For those who don’t follow me often this was a Gammagard bran IVIG IV infusion, 30g/300ml infused over 4 hours. This is for my PI (primary immunodeficiency). 

LLMD Visit – New Meds 

7 Jun

  
My latest visit to the LLMD. Brain pressure has been something I’ve been suffering from for many years with cluster headaches and frequent migraines. Also aseptic meningitis from IVIG infusions. This was just a routine follow up appointment for the stupid pain meds law. But while there we addressed some of my current medical issues. 

My blood pressure has been high again lately and my heart acting up. The doctor said she could prescribe a medication for my hypertension which would mostly be for the cranial pressure called Losartan. So far it seems to be helping a little and my brain isn’t hurting as much. The cranial pressure makes it hard to think, react, and causes one to feel absolutely horrible each day. It’s a constant non-stop pressure that’s been there for at least 6-7 years. I hope this medication will continue to help give me at least one of my hundreds of symptoms some relief. 

I will be starting LDI injections soon. I had to check my vitamin D levels and I will be increasing the Vitamin D level to I believe she says a “90” or else you can’t do the injections. I’ve had a history of low D in past and have been on 50,000IU daily to get it back up. With Lupus I cannot be in the sun and get natural Vitamin D and I have a genetic problem with converting Vitamin D so it’s hard to get D. 

My blood has been thick again and I’ve been clotting during infusions. Blood thinners work too good for me such as RX or baby aspirin so we are going to try Nattokinase. This is a supplement blood thinner which should keep the blood flowing. At my recent blood test the phlebotomist said it took a long time to get the blood and it was sluggish. When I take baby aspirin I bleed from my ears and when my nurse stick me with the IV needle I bleed out all over the place. So this should be just the right amount. 

Minocycline and Tinidazole are the only two meds that help keep my Lyme from having a party so I’ve been on them as a maintenance dose. But I have been herxing a lot and having a build up of too many toxins that I can’t detox fast enough so we are cutting back on the dose. With Dr. Harris I think he had me on such a high dose of Minocycline even my primary’s and other LLMDs say “that could have killed you”! I had to go to the ER on only 3/4 of the dose he wanted me on. So be careful with Minocycline it’s rough on the brain or Lyme in the brain. 

I have an IVIG infusion this week so I need to rest up. I wish you all a much better week! Stay strong guys/gals 

 
Tonight’s smoothie  

Monthly IVIG (Human Plasma) Infusion 

16 May

 
IVIG Infusion  

I still don’t feel confident enough to go to four 30g/300ml infusions per month so for now I am doing one per month. I am on year one or two of a four year course of human plasma. 

Every Wednesday in the middle of each month my nurse comes over to my house to infuse me. So I get to sit in the comfort of my home and do the infusion since I get too car sick to go to an infusion center. The IVIG makes me very drowsy and sleepy during the infusion. I’m usually nodding off and not sure what my nurse is saying most of the time. 

This infusion went well and took about 4-5 hour for a 30g/300ml bottle of gmmgard (brand of human plasma) and a 250ml saline bag. I took all my pre-meds and hydrated as much as I could at 8am since I’m not a morning person and that is during my bedtime. It would be like some who goes to bed at 9pm being woke up at midnight to get a 5 hour infusion then try to stay awake all night until 9pm the following day. 

My veins weren’t being cooperative but better than other times. It took the nurse four needle pokes in four different areas/veins to get a good one. I can no longer use my left arm due to RSD (RSD is one of the most severe pains in the world). So we only have my right arm to work with. He tried a vein in the middle of my arm but the vein lead to nowhere like it was only a tributary so I felt the flush of cold saline only go up a few inches then stop and swell up as if the vein was blocked. 

The next was in my hand where that vein collapsed. The next was on my forearm and that vein rolled or vasospasmed. We had succees the fourth vein but it was on my elbow crease so I couldn’t move my arm even one inch or it would set of the pump alarm so I had to sit very still. The alarm controls the amount of fluid into the vein so it’s not to fast of an infusion. But if you bend your arm you bend the IV tubing which can close of the flow. 

So far my brain is hurting and slightly inflamed but not too bad and no aseptic meningitis so far (knock on wood). Aseptic meningitis can be deadly and is not very fun, I’ve had it a few times and literally thought I would die. You can’t move, think, talk, breathe….etc. I’ve had fever and chills but I have that daily so I’m used to those symptoms and side effects. Other than that not too bad so far. 
I hope all my readers are finding success with treatment, have someone to support you and I hope you are finding beauty in life itself although everything hurts. Stay strong warriors! 

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