#autoimmuneillness

[anthonypaulh]

GETTING my TEETH into ITP and DENTAL TREATMENT

Before my purple journey started in 2006 a routine dental appointment would usually be completely straightforward, until then I had never really given much thought to what ITP sufferers should do in respect of such matters. 

Would ITP make any difference to my dental treatment ? What should I tell my dentist about my illness, my medication, my current and future treatment ? Did he need to know ? Why did he need to know ? Could he treat me as a normal patient ? Could he treat me at all ? 

For most people the merest hint of a dental appointment usually sets the collies wobbling. For some it's the buzzing of the drill, for others it's the smell of antiseptic or the taste of the mouth wash. Whatever turns us off, dental appointments are not much fun. 

Luckily I have always had excellent treatment from my dentist. I can't say that a visit to my dentist has ever held any concerns at all. I guess I'm lucky in this respect. So a visit to my dentist as an ITP patient wouldn’t  be any different, would it ?

Well, er, yes actually, it's very different. Just to make me slightly anxious I had heard that a number of ITP patients indicated that they had great difficulty in finding a dentist who had any idea what ITP actually was. Surely things were not this bad ? It was not Victorian England where some people had wooden false teeth and some did DIY dentistry with pliers and string tied to door handles. Hard times indeed. 

The importance of getting regular dental checks is so important whether or not you have ITP but once under the purple influence it becomes even more vital. The phrase prevention rather than cure always comes to the fore when thinking about dental checks but with ITP it is absolutely imperative.

The last thing any of us with ITP needs is to have intrusive dental treatment, which is obviously going to be more difficult if we have a low or fluctuating platelet count. So by getting checked regularly and making sure we keep to good daily routines for oral hygiene, hopefully we can avoid treatment for things like fillings, gum disease and even extractions.

I knew that I had to tell my dentist that I had ITP.  I had to advise him what treatment I had received, what drugs I had been taking , what my latest platelet count was and what treatment regime I was gong to continue with. I knew all this because I had obtained a really useful leaflet from the ITP Support Association. It was very soberly entitled... Protocol for dentists treating patients with Thrombocytopenia. A protocol sounded like something the UN would have drawn up.  But nevertheless it was extremely helpful and I gave a copy to my dentist at my appointment.  

At the dental appointment, as ever, my dentist made things as easy as proverbial pie. He  is just very good at what he does. He's so professional, well informed, up to date with all the latest technology and information (He didn't even pay me to say any of that ! )  I told him that since we'd last met I'd been diagnosed with something called ITP.  Just like everyone else I’d told about my ITP, I thought he'd say something along the lines of ...... Well you don't look ill, I've never heard of it but I'm sure you'll be fine. 

What he actually said was that although he didn't have any other patients with ITP, he'd heard of it. He would treat me in a similar way to a haemophiliac, although he realised that there were many, many differences. He switched on his laptop and we looked up ITP. I'd given him my stodgily named Protocol for dentists leaflet already but he also looked up the ITP Support Association website there and then.

He took notes as I told him my purple history to date. He recorded details of my drugs...Prednisolone, Omeprazole, Alendronic Acid, Rituximab, Mycophenolate Mofetil, platelet count history, current treatment regime, name and contact details of my specialist and any other medical history of relevance.

I didn't have any other medical history apart from ITP so , that was pretty much that. Drama over, we just needed to do the dental bit. Just open wide, say cheese and hope for the best !

It may seem obvious that our dentist needs to know our platelet count. If any treatment is needed, especially an extraction, a platelet count under 50 may preclude that treatment from being carried out. 

If you are going to have any treatment it is sometimes necessary to get a blood test to check your platelet count before undergoing that treatment and with some people it may also be necessary to consult with your ITP specialist/haematologist. 

Advising our dentists of what medication we are currently taking and have taken for the last 12 months is also vital. Any drugs the dentist uses to anaesthetise us for example, may clash with any medications we have taken for our ITP or any other medical condition for that matter. 

Another problem is that should we encounter any pain following any dental interventions the only painkillers we can take are Paracetamol. ITP sufferers must avoid Aspirin or Ibuprofen. Having purple in your life gives you so many things to think about. 

For further information on all things ITP the following links are to the most reliable and up to date sources - 

The ITP Support Association - www.itpsupport.org.uk 

The Platelet Disorder Support Association - https://www.pdsa.org 

ITP Australia - https://itpaustralia.org.au/ 

[livewellclinics]

There are over 150 conditions classified as autoimmune diseases and with an extensive list, about 25% of patients tend to develop concurrent ADs aside from their primary condition

[sarahannee]

Worked ~50 hours in a full costo flare — with an inflamed thoracic nerve. And a rib that’s trying to pop out and say “hi” in the middle of my sternum. 💁🏼‍♀️ I need to do less. Bring on the weekend of self-care. I’ve disrespected The Creature too much this time. 🥄 #spoonie #success #workflow #psyd #respecttheflare #autoimmune #chronicillness #survival #autoimmunedisease #autoimmuneillness #costochondritis #endometriosis #bydls #butyoudontlooksick #invisibleillness #tenacity #makeup #wakeupandmakeup #shapetapeconcealer #facetape #lookalive #fakeittillyoumakeit (at Fort Lauderdale, Florida) https://www.instagram.com/p/B3fg4y-hUgx/?igshid=1rvinu5dakfgt

[wahminsc]

Part of today's schedule includes meal planning and grocery shopping sometime over the weekend. Cutting back on the processed stuff for a while to see how it helps. #wfpb #for Documenting today's health stuff, so you can stop reading now. Pain was at a constant 8/10 earlier and is down 7/10 with otc meds. I am going to run out of stronger stuff very soon and hope that the doc visit next Tuesday leads to a diagnosis and accurate treatment so days like these are fewer and farther between. I may look calm, but I am screaming inside. If you have chronic issues, how long did it take for you to receive an accurate dx? I'm going on six years since the initial fibromyalgia and cfs diagnoses and have been in constant pain since 2003-2004. This is why I'm screaming. #chronicillness #invisibleillness #chronicpain #fibromyalgia #cfs #autoimmuneillness https://www.instagram.com/p/CbirL6bO4XF/?utm_medium=tumblr

[mylifewithhurley]

The Lifter of My Head

Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me. Psalm 23:4

This week, a co-worker had an extremely bad allergic reaction. Her body broke out in hives all over and she was extremely itchy and uncomfortable. She had even cried about it, out of frustration and fear. Somewhere in the middle of her describing her experience with it all, she mentioned that if she had to live the rest of her life that way, she wouldn't. I froze. 

Anxiety in a man's heart weighs him down, but a good word makes him glad. Proverbs 12:25 I once read somewhere that HS is not fatal, except in cases of suicide. While I don't personally know anyone who has committed suicide as a result of not able to cope with the disease, I can totally understand not wanting to live this way. HS can be so awful. Yes, it does get THAT bad. I can understand wanting it all to end. Actually, I've been there. Maybe my co-worker didn't mean it, but I could relate to it all. All of the symptoms, all of the emotions, and sadly, even the not wanting to live part. But you, O Lord, are a shield about me, my glory, and the lifter of my head. Psalm 3:3 While I have never felt the urge to kill myself, I have had thoughts of wanting to die or be killed because I didn't want to live with the pain & shame of HS. I have thought to myself - if this is how my life is going to be, I don't want it. I have wished that a car would come out of no where and hit mine, front driver side - quick and dirty. Of course, I never told anyone I've felt this way. These are the kinds of thoughts that people keep to themselves. There's a stigma around people that have these sort of feelings and God forbid we be considered one of them, right? But we are them. It's a fact: our disease makes us susceptible to depression and wanting to die. That's okay because these thoughts and feelings can be conquered and there is a beautiful testimony to be shared at the end of it all. Consider it a great joy, my brothers and sisters, whenever you experience various trials, because you know that the testing of your faith produces endurance. And let endurance have its full effect, so that you may be mature and complete, lacking nothing. James 1:2-4 

It may be easier said than done, but one of the most important things to remember is that you are not alone. Of course, you have family and friends that love and care for you. Sometimes, though, you just want to know there are others out there who can truly understand what it is you're feeling. There is a large online community of HS sufferers who can absolutely understand and are always there. And if that isn't enough for you, you can step outside that community and find others; those who suffer from other autoimmune diseases or struggle with depression, who you will be able to relate to also. You may even find some comfort in personal accounts and testimonies recorded in the Bible. The Bible is filled with stories of people who waited on God and were not disappointed. There's Job, who was definitely depressed after losing everything but never, ever lost his faith, and was eventually restored fully. There's the people of Israel who wandered in the wilderness for 40 years, but continued to follow the men God placed before them, before finally reaching the land that was promised to them. God made Sarah laugh with joy when he gave her a child in her old age, after for most of her life she believed and grieved that she was barren and could not have children. You are not alone. Trust God. You will not be put to shame. I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world. John 16:33

We become depressed not because we have been defeated or dominated by the giant we face, but when we are overwhelmed and controlled by negative thoughts. We know the Word of God says "many are the afflictions of the righteous, but the LORD delivers him out of them all" (Psalm 34:19), but we also welcome thoughts and lies from the enemy, telling us things will never get better and we will suffer forever. The devil wants to steal and control of all your thoughts and to keep you in a state of depression. Nurture your thoughts of God being bigger and better than your problems. Feed your appetite for the Word of God.  The mind is very powerful. Encourage your hope. Increase your praise. Strengthen your faith. "Whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things (Philippians 4:8). It's true - one thought of your situation can enslave you and send you down a rabbit hole of depressive thoughts, but it's also true that one thought of Jesus, his goodness, his faithfulness, his grace, his mercy, his love, can lift you out of the pit. It takes strategy, discipline and practice, but when you catch the enemy stealing control of your thoughts, make him pay you back, sevenfold (Proverbs 6:30-31).

Come to me, all who labor and are heavy laden, and I will give you rest. Matthew 11:28

[msaliscia]

So I had to make a mask to match my outfit this morning 😷 If we have to wear them, then I need to make it "fashion"😝 Factoid: I started sewing when I was about 3, got my first sewing machine for my 7th birthday. Currently I'm using my Granny's machine that was given to me when she passed. I've taught all my kids to sew on it. ❤️. #sewing #sewistsofinstagram #sew #mask #wearethevulnerable #immunecompromised #sewingprojects #autoimmunedisease #autoimmuneillness #cancer #thyroidcancer #thyroiddisease #spooniewarrior #spoonieprobs #mastcellactivationdisorder #mastcelldisease #gastroparesis #migrainelife #hesa #braindamage #fashionover40 #fashion https://www.instagram.com/p/B_fkDY7jDga/?igshid=swrb9sy22sfn

[echota-is-healing]

My beautiful tribe member and soul sister @jtami made this amazing tribute video that has me in tears. #Repost @jtami (@get_repost) ・・・ ✨Part 2 of 2 of a 7 min version of “Medical Medium Hearts of Gold” video on my YOUTUBE (the link is on my bio) https://youtu.be/m4n0QtNQrB0 ✨ for everyone in the Medical Medium Community, Anthony William @medicalmedium, Spirit, and his team. I hope you get a chance to watch the longer version - this short one is only a little of it! I hope you enjoy it!💛I wanted to make this after the last IG he did in November. If you were there, you know that was just out of this world—the interaction with everyone and Anthony, and all that light and energy. There are never enough words to express my gratitude, which seems to be similar to how others feel about their indescribable suffering, healing and the Medical Medium community. 💛Thank you Anthony, and everyone for letting me use your re-posts on @medicalmedium, I’m sorry I couldn’t get everyone in! I tried to get as many people in as I could for the length of the 2 songs. 💛I hope this makes you smile, or inspires you to go make some celery juice haha! 💪💚😛 I did! 💛Thank you for your friendship and support. Lots of love to you and your families for the holiday season! ✨❤️🙏🏼❤️✨🎄🐶🐾🕊 #medicalmedium #MMtribe #medicalmediumvideo2017 #IcanSeeClearlyNow #johnnyNash #heartsofgold #heartofgold2017 #healyourbody #healyourmind #medicalmediumcommunity #healingpower #lifechangingfoods #ilovemyigfamily #thyroidhealing #mentalhealthsupport #gratitiude #videosofig #videocompilation #videomontage #healthandwellness #chronicillness #autoimmuneillness #autoimmunedisease #mentalhealthawareness #antidepression @medicalmedium @k_e_i_g_h_t @dolphinmelody @savaea @aneliesa.vegan @planthealingcrystal @fortheloveoflyme @alison__wu @vibrantlynourished @themindfulmenu @muneeza_medical_intuitive @the.healing.path @mylittlepaimei @jonny_juicer @echota_is_healing @amazed_by_plants @falco7615

[maxima12]

Self love includes embracing the good and bad about yourself. I choose not to be silent anymore about what I’ve been through, but share with others who could be experiencing the same thing. This is my purpose from this point on. 💜💜💜💜💜#selflove #selfcare #hidradenitissuppurativa #hs #hidradenitissuppurativaawareness #HSawareness #onelifetolife #getinformed #invisibleillness #chronicillness #autoimmuneillness #invisibleillnessfighter #hsstandup #understandit https://www.instagram.com/p/ByS15n1hHvVzZIt9u4VFp2nJ9Fl08O1dfi2dgk0/?igshid=1o9gyigkqjvmn

[naturalelementsby-l-blog]

⚠️ NEW ARTICLE ALERT ⚠️Auto Immune Diseases and Super Bug Concerns⠀ ⠀ Have you heard health officials all across the United States are warning of "a serious global health threat" from a super bug fungus that as of today is considered to be drug-resistant. The Centers for Disease Control and Prevention says the fungus called, Candida Auris, has already sickened hundreds of people in the United States....READ FULL ARTICLE 👇🏽👇🏽⠀ https://buff.ly/2GccVKd . . . @prilaga #autoimmunewellness #autoimmunepaleo #autoimmunehepatitis #autoimmunelife #autoimmuneillness #autoimmunehealth #autoimmunearthritis #autoimmunediseases #autoimmunedisease #autoimmuneprotocoldiet #autoimmuneplate #autoimmunehealing #autoimmunediseasewarrior #autoimmuneprotocol #autoimmunedisorders #autoimmunediet #autoimmunewarrior #autoimmunepaleoprotocol #autoimmune #autoimmuneencephalitis #autoimmunerkrankung #autoimmunefighter #autoimmunedisorder #autoimmuneketo #autoimmunes #autoimmuneawareness #autoimmunetribe #autoimmunethyroid #autoimmunediseaseawareness https://www.instagram.com/naturalelementsbyl/p/BxQBHPlF7x8/?igshid=1qeuuwt06ppir

[cr8tifleeme]

A smile on my face does not mean I've been miraculously cured. It doesn't mean I'm not in pain. It doesn't even mean I'm not depressed. However, it does mean that everyday I get out of bed and smile at the world I show Lupus that it picked the wrong woman to start with.

[tropicanine]

make jokes about yourself to get going skmehow. if you're german you get it. well it's basicly saying bag animal which would be a marsupial. hence the stoma i found it was quite funny I even called an email of mine like that before. I just had to take it. #colitisawareness #colitisulcerosa #ulcerativecolitis #crohn #crohns #ibd #ibdorknownasinflammatoryboweldisease #photooftheday #may #bag #backpack #ourlifewithcrohns #illness #crohnicillness #autoimmuneillness #autoimmune @ulcerativecolitissupport @our_life_with_crohns

[unrepentant-thinner]

Nice evening despite it all

My hubby was so sweet last night knowing I didn’t feel well, I came home from work to dinner already made, my favorite jammies and slippers laid out for me and the television already tuned in for my hockey game. 🙂 I really don’t deserve him. ❤️ Later something even more amazing happened. Quarter after 9 my phone rang and it was a number I didn’t recognize but I answer it anyway and it was my doctor! That late and she was calling to check on me and make sure that I was good for the evening. You couldn’t pay me enough to go to a different doctor! What an awesome lady, I mean how many doctors do you know that would go out of their way and on their own time to call a patient after hours and check on them?!? Doc did wrestle my meds around and although still in pain today I’m not nearly as bad as I was and I can breathe again! Might take a few days to get back to how I was but I’ll get there. Itching to run a 5k and can’t wait till I can again! It’s a better day!

[sarahannee]

When “thinner” is the problem. 🙄 I know people think my difficulties gaining weight is a “good” problem to have because I can eat all of the comfort food I want without worrying about becoming overweight — but it’s not. I’m an adult who can’t seem to get my weight above that of a middle schooler. With ever drop of the decimal, I’m reminded of just unhealthy I am and it’s scary. #spoonie #fml #ibd #chronicillness #survival #autoimmunedisease #autoimmuneillness #costochondritis #endometriosis #bydls #thinner #butyoudontlooksick #invisibleillness #weightloss #notcool #anxiety #selfesteem #weightgain (at Broward County, Florida) https://www.instagram.com/p/ByZI-OChcUt/?igshid=qxn8vqf4bqsw

[theresanicassio]

Jules Shepard @gfjules – How #CeliacDisease Changed My Life • http://stfi.re/pyerlar • • If you haven't already heard, #JulesShepard will be interviewed live on #Lunchtime #Radio this Monday (January 9th) at noon PT/3pm ET, including the opportunity to phone in to ask her questions or share your experiences on The #drtheresanicassioshow. • • If you are unable to listen in on Monday, the #radiointerview will be available as a #podcast soon after, accessible from the same link. The interview will be from the heart sharing about her amazing story. As a head's up, Dr. #alessiofasano M.D. will be on the show on Monday, February 27th and #CarolineMoassessi will then be on the program on March 20th - so be sure to mark your calendars for those shows too - all at the same time at 3:00-4:00pm ET. Hope you can join us. These will be awesome programs. ❤️ @theresanicassio Here's the Link for Jules's show: http://stfi.re/pyerlar #wuvip #autoimmunewarrior #autoimmunediet #autoimmuneplate #autoimmuneillness #autoimmunedisorder #autoimmunediseases #celiaclife #celiacsafe #celiacfood #celiacruzallstars #celiacawareness #celiachia #celiaca #celiaco #theresanicassio #sharejoy #lovenotfear #transformyou (at Vancouver, British Columbia)

[tamilhagglund-blog]

I have promised to always be real with you.⠀ ⠀ I really don’t like curated social media wherein a person is marketing a polished version of themselves, particularly to sell you something.⠀ ⠀ I don’t necessarily think it is morally wrong, I just can’t do it. Whether someone has known me for 20 minutes or 20 years they’ll tell you I am always 100% authentically me. ⠀ ⠀ No matter what I discover in myself if I see it i say it.⠀ ⠀ I have more thoughts on the selling something part, but I also have no issues with people making money. I want to see more women, & millennials in general, making living wages.⠀ ⠀ My issue is with being false to trick people into giving you their money. I literally lay awake at night checking my motives. I am PASSIONATE about this business I am building because I believe it will help people be free. ⠀ ⠀ In fact, because of you kind souls reaching out, I know it already is. I have big dreams & feel zero percent bad about making money off of them.⠀ ⠀ SO.⠀ ⠀ This is me today. Puffy faced & wounded eyes. ⠀ ⠀ After traveling a few family members got sniffles. I got knocked down, dragged out sick. I can barely think straight. I can’t breathe without pain. Every joint is screaming. My neck is so stiff I can’t move my head. Being awake is exhausting but I am sleeping like crap.⠀ ⠀ I decided to do some research & it isn’t in my head—autoimmune illness sufferers tend to be hit much harder by viruses & that can cause an autoimmune flare. I always felt like that was true & it is.⠀ ⠀ So this is me. Things aren’t great today. The deck of cards dealt me aren’t the best. My body suffers because those who were supposed to protect me harmed me instead, & #TheBodyKeepsTheScore always.⠀ ⠀ But what is also true is that I only have #ThisOneFuckingLife. I’m LIVING it, not just surviving. ⠀ ⠀ I’m #AliveAndFree.⠀ ⠀ [As always, raw selfie image included.]⠀ ⠀ #bopo #bodyposi #trauma #healingfromtrauma #healingaftertrauma #FreedomAfterTrauma #autoimmuneillness #chronicillness #chronicpain #chronicfatigue #spoonie #t1fl #thisoneeffinglife #BelieveSurvivors #BelieveWomen #ACEScore10 #ACEStoohigh #loveyourself #selflove #childhoodtrauma #incestsurvivor #abusesurvivor https://www.instagram.com/p/BoNmCmpnGbL/?utm_source=ig_tumblr_share&igshid=a9nmwxf8w7ik