Life with chronic and acute health problems.

I haven’t blogged for a while.  I got acutely sick (again) the last couple of weeks of January.  I am blogging this now thanks to a bout of insomnia and burst of energy after a terrible exhaustion collapse earlier this evening.

From time to time, different people ask me to explain to them what exactly is going on with my health.  They really care and want to know, but I find it exhausting to try to explain (again) to someone the multiple layers of health issues I experience.  I’ve also found over the years that many people, when asked to pray for my health generally, or asked to pray about this or that doctor appointment, desire to try to solve my health issues for me, instead of giving support and prayer, and veer into recommending certain doctors, diet protocols, etc.  This is extremely hurtful and frustrating, so I tend to shut down and hesitate to bother trying to explain my health struggles.  However, I have joined a new church, and have many new friends who genuinely care and want to understand my situation, so I have decided to prepare this blog to explain my present situation, as well as my history and what I’ve been through, as best I can.  This will be a long story, but is likely going to be very therapeutic for me to write, so I hope you might bear with me.

In high school I took multiple rounds of various antibiotics for sinus infections, bronchitis/pneumonia, and acute acne, including Tetracycline.  These likely destroyed my gut flora setting the stage for the development of autoimmune diseases.  Of course at that time, I knew nothing of those risks.  I developed chronic/acute constipation since age 20 and my health began to change around age 26 (1984).  I believe I developed two autoimmune diseases at that time, but they were not diagnosed until age 33 (1991):  Hashimoto’s Thyroiditis and Sjogren’s Syndrome.  My eyes began to start hurting around that time (Sjogren’s Syndrome).  I began to be tired and sick, though I did not realize it at the time.  I also had hormone imbalance issues that were not diagnosed or treated until 1997.  In 1983 I had a miscarriage and after that I had difficulty getting pregnant (hormone issues) and underwent some infertility testing. I had my second child in 1987 and that pregnancy really impacted my health as my body was already declining.  After the birth of my second child in 1987 I suffered acute fatigue and sickness, “allergies”, and rashes.  In 1991 I was finally diagnosed with Hashimoto’s Thyroiditis and began taking medication and I was diagnosed with Sjogren’s Syndrome at some point later, probably around 1995.  In 1997 I began to seek out natural health physicians because traditional medicine had no answers or help for me.  In 1997 I began proper natural Thyroid medication (Armour Thyroid instead of Synthroid) and natural custom-made hormone replacement therapy which both helped improve my fatigue and sickness.  In 1998 I had all the mercury in my mouth removed (lots of dental work) and had several jaw surgeries to remove infected root canals and infection in my jaw bones. These dental issues are implicated as possible contributory factors to autoimmune diseases.  In November 1999, I had severe chest pains.  I since realize this was a case of acute GERD (gastro-esophageal reflux disease), but at the time I did not yet know what this was.  I called my doctor, and since it involved chest pain, I was instructed to go to an ER for evaluation.  I was given a chest x-ray which revealed growths in my lungs and I was referred to a pulmonologist. I was diagnosed (by biopsy) with Sarcoidosis with granuloma growths in my lungs, and lymphoma was also suspected and I was being watched for that.  I was told I likely would not live five more years to see my youngest child graduate high school.  Around this time, my Sjogren’s Syndrome, especially affecting my eyes, had become quite acute and painful to the point I could hardly stand to keep my eyes open in any amount of light.  I chose to do alternative natural treatments in Mexico to treat my lung disease and Sjogren’s Syndrome. Long story short, the treatments were highly unusual, but my lung disease went completely away, and I also gained big improvements in my overall health—my gut/constipation improved, my autoimmune diseases went into remission for about 10 years, my acute sinus problems with cough and allergies all went away.  At some point in this time range my body developed Interstitial Cystitis, with painful frequent urination, but it was not diagnosed officially until many years later.  That disease came upon me so gradually, that I did not even realize it was happening to me.

Overlapping all this systemic illness, in February 1998 I suffered an acute low back injury (SI joint and disk problems) which caused me much pain and issues through 2006 when I had herniated disk surgery.  I’ve suffered multiple times of re-injuries and pain to date.  I must remember to not bend from the waist or lift much weight or I am always at risk of re-injuring myself.  I also had an acute left foot injury in Sept. 2013 which has never fully healed and frequently re-injures.

On 8/30-31/2007 I suffered an acute allergic/systemic reaction to unknown substances (possibly mold or foods) which caused me to faint and crack my head open badly. On 11/5/07 I had a hysterectomy for prolapsed uterus, which problem was discovered when trying to find help for my bladder issues.  From around 2007 on, my health began to gradually decline again, and my autoimmune diseases/Sjogren’s Syndrome began to worsen again.  In 2010-2011 and 2015-2016 I again had severe back re-injuries to deal with.  In 2016 I was diagnosed with SIBO-C (a gut disease).  I’ve tried various treatments to improve my gut, with no success.

Around 2014 it became increasingly difficult to keep up with my busy life: work as a legal assistant, multiple Christian volunteer jobs including Bible Study Fellowship leadership, etc., helping care for my granddaughter, family, etc., due to fatigue and sickness, especially being sick in the mornings.  I began having two types of weird sick spells which I believe may be POTS/dysautonomia and/or mast cell disease/food histamine allergies.  I have been unable to find a doctor to date that can properly diagnose those issues.  I presently have an appointment on 2/27/18 to see a new doctor who may be able to help diagnose me.  I “retired” from my legal assistant job on 7/31/15, because of my health issues and a desire to spend my time serving God directly.  I should have applied for a disability but have not taken those steps, and I believe with my particular issues it might be difficult to prove a disability, because much of what I experience is intermittent and I still can do a lot of work.

In August 2017, I received a dental evaluation in which many of my teeth were acutely decayed (caused by Sjogren’s Syndrome, dry mouth) and had multiple extractions, fillings, and bridges done.  I’ve had around 25 dental appointments since then, and suffered multiple local allergic reactions in the process.  I was left with one missing tooth in the top front of my mouth, which besides being very uncomfortable and impacting my bite and chewing, is unsightly and embarrassing.  I am scheduled to have an implant on 3/1/18, which will be followed by a crown if all goes well, and that will complete this latest round of dental work.  But with my systemic health, allergy issues, and past jaw infection history, I am debating whether it is wise to place a metal implant into my jaw.  I’m praying for wisdom and peace about that.

So, to answer peoples’ questions – what exactly is going on with your health? – I presently have the following health concerns. Some of these are “private” and embarrassing to mention, but must be mentioned to fully understand the scope of what I am dealing with.  I am also tired of being embarrassed about my health and keeping things secret.  I hope that my transparency and sharing might help someone else out there who is suffering similarly to be encouraged.  If you have IC etc.—you are not alone.

  • Interstitial Cystitis (frequent, painful bladder with some incontinence)
  • Constipation, Acute & Chronic since around age 20
  • SIBO-C (gut bacteria imbalance disease)
  • Hemorrhoids (usually not very bothersome)
  • GERD occasionally after eating, often severe pain
  • Hashimoto’s Thyroiditis (taking Armour Thyroid 90 mg daily)
  • Sjogren’s Syndrome (use many expensive OTC helps for dry eye, nose, mouth, etc. symptoms, NOT covered by insurance)
  • Various “Reactions” to foods and unknown things – (probably histamine intolerant; suspect I may have a mast cell disease, high blood tryptase level)
  • Sick spells with being freezing cold first, then baking hot with “sickness”, fatigue, exhaustion collapses, usually last 2 to 4 hours, sometimes followed by hives
  • Hives and “poking itches”
  • “Jerking” of body spells
  • Dizzy, low blood pressure, near fainting (one time I did faint with an acute reaction) (possibly POTS/dysautonomia)
  • Vertigo / room spinning (separate from the above type of dizziness)
  • Allergic reactions to many pharmaceutical medications, or reverse reaction than expected, including dental materials
  • Migraine Headaches rarely (much less than in the past)
  • Hair loss
  • Dry and itchy skin
  • Occasional eczema rash (usually on my chest)
  • Occasional vaginal yeast infections especially after if I’ve used an antibiotic
  • Acute dental problems and loss of some teeth (Sjogren’s Syndrome)
  • Left ear is messed up (did not heal right after an ear infection)
  • Acute sinus and ear pain/pressure with hearing loss when flying or at high altitude
  • Hearing loss generally
  • Neck, scapula, low back, SI joints, left foot structural body damage and recurring flares (former herniated disk L4-5, bone spur in neck at C3).
  • General fatigue ALWAYS with acute exhaustion collapses
  • Stiffness especially in the morning DAILY (Sjogren’s Syndrome)
  • Occasionally depression/anxiety/manic – mood swings (less lately)
  • Occasionally heart beats too hard and/or too fast
  • High cholesterol and family history – at risk of heart attack and stroke

What is it like to live with so much systemic sickness and structural body damage issues?  It is hard.  I constantly hear things like – “You don’t look sick.” – “You look so fit!” Invisible disease is very hard to bear.  Sometimes I wish that I just had some big issue like cancer or a brain tumor – something that would really get peoples’ attention and sympathy, and that would take you out of having to try to keep up with life, because no one really understands your sickness which just goes on day after day.  Something that would make people want to bring you meals and send you cards.  But with invisible, chronic illness that never stops, all a person can do is keep pressing on as best they can.  It can be a lonely road.  It feels like everyone else is walking along free and unencumbered while I am trying to keep up while sloshing through thickening concrete that is increasingly slowing down my pace.  At times now, the concrete hardens completely and I am completely unable to function.  I have reached the point of so much physical and mental exhaustion now, that I am tired of trying to keep pressing through the fatigue and exhaustion and sickness.  I believe God is telling me it is time to rest.  Despite the great passion for Christ that I finally have, the realization of how short life is, and how many people I desire to serve and help, I believe God is saying to me that when I am sick, I must rest and stop trying to press on and work through it.  It is time for me to learn to say no to the demands of life, but it is so hard for me.  Each thing left in my life is precious to me and I do not want to give anything more up.  I need wisdom and prayer about this.  How do I say no to time with grandchildren, or just being able to sit through a beloved church service?  Where do I draw the line?

Having watched others go through terrible cancer, sudden death, horrible brain tumor surgeries, etc., I realize that those horrendous issues would not be better than what I am going through.  Each day of my life is precious and is an incredible gift from God.  My heart goes out to those who are suffering those type of severe illness and death things.  Ultimately, we all have to accept whatever trials and issues God allows in our lives.  Everything God had allowed for me has been filtered through His hands and given to me for a reason.  I hope to blog separately about how I’ve been learning to trust God through trials, and how God NEVER gives me more than I can bear, but that’s a topic for another day.

I also would be remiss if I did not remember here to thank God for the way He has provided so well for me in my illness and injuries.  I have a comfortable home, a warm bed to sleep in, clean water and access to the best foods in the world, a husband who is strong and able and covers me by providing practical help, financial provision, and so many blessings that so many do not have.  I often wonder what it is like for people who have Sjogren’s Syndrome or other chronic illnesses who do not have these blessings and provisions provided.  It is unthinkable to me.

So, I would appreciate your prayer support regarding my health issues.  I do not desire to hear recommendations regarding diet, doctors, etc.  I could write a book about all I’ve researched and tried over the years.  I do not desire to have someone “lay hands on me,” “anoint me with oil” or other spiritual wacky stuff—I have my own pastor, church and prayer warriors and I have thoroughly prayed for God’s best and perfect will for my life, and I do so daily.  Am I doing everything I probably could or should to cooperate in improving my health?—probably not, but that is my choice and decision.  Do pray for God to give me wisdom and the desire to obey Him with the wisdom He may give me concerning diet, doctors, etc.  Please pray for my healing IF THAT IS GOD’S WILL FOR ME, but please do not assume I lack faith or am bogged down in sin, and assume or accuse me that that is why God has not healed me physically.  This is one of the most hurtful things any well-meaning Christian can say to someone suffering illness (please read and understand the book of Job)—something I’ve dealt with often over the years.  Please pray for God to give me strength to continue bearing up under the health trials He has chosen to allow in my life.  Pray God will use me as He wills whether I am sick or well.  Pray for God to be glorified in my life and for me to remain completely surrendered to His will and His Word.  Thanks for listening and for your support and prayers.

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