As anyone who has ever experienced a migraine will tell you that it is nearly impossible to think clearly or communicate effectively during an attack. Many will attest to residual problems during the postdrome as well as preliminary problems during the prodrome. For patients with chronic migraine, the ability to think and speak coherently can appear to never end. I have even talked to migraineurs who are skeptical of current research that claims there are no lasting cognitive deficits resulting from white matter lesions so often found on the MRIs of long-term patients. To be fair, the research has produced conflicting results. It’s just too soon to know for sure.

What is known is that stress and pain can significantly impact our mental functioning. Our bodies go into a type of “high alert”, favoring action over manners or political correctness. Live with pain and stress long enough and it’s bound to take its toll on your brainpower. Part of the reason may be environmental. I’m not suggesting there is not a biological explanation for migraine-related cognitive impairment. Instead, I’d like to suggest that it is possible to do something to offset that “migraine brain”.

You can learn to compensate for what the mind fails to do (i.e. word loss, forgetfulness, etc.). People with irreversible cognitive damage are often taught how to use specific strategies to compensate for their disabilities. These same strategies are taught to children with ADHD to help them stay on task. They will work equally well for migraineurs.

There is one catch. The professionals who teach these skills are not medical doctors. Most are counselors, therapists, social workers, and psychologists. I realize that some patients have been referred to mental health professionals as a way to “patient-dump” or because their doctors believed their pain was psychosomatic. The topic of mental health can be a very raw subject for a lot of us. If you will indulge me, I would like to try to redeem the reputation of my profession.

The therapies employed focus on compensating for cognitive deficits called Executive Functioning Skills. These are eleven skills that govern our behavior, regulate our emotions, and set and achieve goals. Depending on genetic, organic, and environmental factors we each develop a unique blend of skill strengths and challenges. Apparently, migraines impair our ability to use these skills, too.

Take a look at the list of skills and see if you can identify with any particular skills. You can also download a brief questionnaire to help you discover your strengths. In future posts, I will introduce a variety of strategies you can use to compensate the next time “migraine brain” takes over.

Executive Functioning Skills
Response inhibition: the ability to think before you speak.
Working memory: the ability to remember lists, dates, phone numbers, and tasks.
Emotional control: the ability to prevent your emotions from interfering with a task until it is complete
Sustained attention: the ability to focus on one thing at a task until it is completed
Task initiation: the opposite of procrastination, particularly when the task is unpleasant or boring
Planning & prioritization: the ability to identify and commit to priorities when there are many competing tasks
Organization: the ability to keep things organized and neat
Time management: the ability to accurately estimate the time it takes to complete a task in order to meet a deadline
Goal-directed persistence: the ability to delay pleasure in order to achieve goals
Metacognition: the ability to be objective about oneself accurately
Flexibility: the ability to handle surprises and make adjustments ‘on the fly’.
Read Part 2 in the “Migraine Brain” series – Working Memory Deficits
Tammy’s first experience with Migraine started in 1975. Currently disabled by multiple pain conditions, Tammy still uses her expertise to help others. She holds a Master’s degree in Professional Counseling and is a skilled Herbalist and Reiki Master. She shares her extensive experience in both conventional and complementary medicine here at Migraine.com and on her own blog, Brain Storm.

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Migraine patients must often weigh the potential benefits of a given treatment against the potential side effects. It’s a perpetual balancing act to find the right combination of effectiveness and tolerable side effects. It helps to have realistic expectations. It also helps when we are fully informed.

 

Informed Consent

I hear from many patients that their doctors do not disclose the known side effects of a medication when prescribing a new treatment. Some have even had close calls because they did not know what to look for. This is inexcusable. While no one can know exactly how a person might respond to a certain treatment, there are migraine treatments with common side effects. Some are minor, while others can be life-threatening. Every patient has the right to know the most common side effects of each prescribed medication.

 

I understand that doctors don’t want to alarm patients unnecessarily or create a self-fulfilling prophecy. However, failure to disclose the true risks of treatment isn’t the way to build trust. A doctor who won’t tell me the truth about a recommended treatment is a doctor who will lose my trust and my business. I spend way too much time consulting with doctors to waste time with someone I can’t trust.

 

Common migraine treatments and their potential side effects:

Triptans: nausea, tightness of chest, neck, or jaw, rapid heart rate, fatigue, numbness or tingling, burning sensation of the skin10

 

NSAIDs: stomach irritation, heartburn, diarrhea, fluid retention, kidney or liver impairment (rare), increased risk of tinnitus1

 

Ergotamines: drowsiness, headache (during withdrawal), vertigo, dystonia, nausea, vomiting, abdominal pain, numbness and tingling of fingers and toes, muscle pain in arms and legs, weakness in the legs, cardiovascular side effects (hypertension, tachycardia, bradycardia, chest pain, heart valve disease) 3

 

Opioids: risk of physical dependence and psychological addiction, nausea, itching, sedation, constipation, worsening of headache, central sensitization2

 

Anti-epileptics:11, 12

 

Valproic acid, divalproex sodium, sodium valproate: tiredness, dizziness, weight gain, tremor, hair loss, skin rash, nausea, vomiting, GI distress, pancreatitis, liver failure, thrombocytopenia, altered metabolism of sex hormones

Topamax: paresthesia, cognitive slowing, tiredness, psychomotor slowing, drowsiness, word finding difficulties, poor memory and concentration, weight loss, kidney stones, glaucoma

Gabapentin: dizziness, tremor, somnolence, nausea, ataxia

Zonisamide: therapeutic action is similar to Topamax with a lower incidence of side effects

 

Anti-depressants

 

Tricyclics: Dry mouth, blurred vision, constipation, urinary retention, drowsiness, increased appetite, orthostatic hypotension, increased sweating, disorientation or confusion, tremor, increased or irregular heart rate, increase in seizures (in patients who already have seizures), sexual dysfunction5

SSRIs: nausea, nervousness, agitation, restlessness, dizziness, sexual dysfunction, drowsiness, insomnia, weight gain or loss, headache, dry mouth, vomiting, diarrhea, muscle aches, leg cramps, hallucinations, swelling of legs and feet6

SNRIs: nausea, dry mouth, dizziness, excessive sweating, tiredness, difficulty urinating, anxiety or agitation, constipation, insomnia, sexual dysfunction, headache, loss of appetite7

MAOIs: dry mouth, nausea, diarrhea, constipation, headache, drowsiness, insomnia, skin reaction, dizziness, involuntary muscle jerking, low blood pressure, sexual dysfunction, sleep disturbances, weight gain, muscle aches, tingling or numbness, difficulty urinating4

 

Calcium Channel Blockers: constipation, headache, low blood pressure, rapid heart rate, dizziness, rash, fatigue, flushing, nausea, swelling of feet and legs9

 

Beta Blockers: fatigue, cold hands, headache, upset stomach, constipation, diarrhea, dizziness, shortness of breath, insomnia, low sex drive, depressive mood8

 

Not everyone will experience every side effect. Some patients will experience rare or unique side effects. The important thing to remember is to keep communicating with your doctor. Together you can decide the right mix of benefits and risks that work for you. It takes mutual trust and patience to discover what works.

 

It took many years of serious work with my doctor to discover that anti-seizure medicines didn’t work and made me too sleepy, anti-depressants and beta blockers were tolerable but ineffective. Calcium channel blockers worked for cluster headaches, but not so well for migraine. Only Botox worked to stop the near-daily onslaught of migraine attacks. I’m lucky.

 

Some of you are probably still trying to find just the right treatments. Others may be discouraged, and feel like giving up.

 

Realistic expectations

Few patients understand what to expect from a given treatment. The results are typically more subtle and modest than we’d like. Treatment takes longer than we expect to have full effect. And side effects can lessen or worsen over time. The harsh reality about current migraine treatments is that they don’t work nearly as well as we hope. It’s all about the numbers.

 

Fifty percent

50% is the “magic” number. A treatment is considered successful if there is at least a 50% reduction in either the frequency or severity of attacks. For most treatments to be considered effective, at least 50% of patients who use it will get a 50% reduction in either frequency or severity. For an episodic migraineur with 4 attacks per month, an effective treatment results in only 2 attacks per month. That sounds wonderful. Now let’s think about chronic migraine. A patient with 15 or more headache days in a month might see a 50% reduction in severity, improved responsiveness to acute treatment, but still experience just as many attacks. Patients who experience chronic daily headache might see a 50% reduction in frequency, but they are still facing down migraine attacks more than half the time.

 

Ninety days

90 days is the minimum time a treatment should be used before deciding it isn’t effective. But there’s a catch. Let’s say your doctor starts you on 25 mg of Topamax. That’s a medication commonly used to prevent migraine. The maximum effective dose can be 200 mg or more daily. So unless your doctor gives you specific instructions on how to titrate up safely, you might be faced with 90 days at each dose change. If you increase by 25 mg every 90 days, it might take almost two years to determine if Topamax is the right treatment for you. Patience and persistence are essential to endure medication trials.

 

Even though most of my family and friends are well educated about migraine, they still struggle to understand why I keep getting attacks. It isn’t unusual to hear, “I thought you said Botox was working,” when someone finds out I am having a migraine attack.

 

It is human nature to believe that an effective medicine is one that eliminates all symptoms. Living with an incurable illness doesn’t afford us that luxury. Medicines and other treatments can reduce the impact of symptoms, but certainly won’t eliminate them all. Choosing a migraine treatment plan is a never-ending series of trade-offs.

 

Tammy’s first experience with Migraine started in 1975. Currently disabled by multiple pain conditions, Tammy still uses her expertise to help others. She holds a Master’s degree in Professional Counseling and is a skilled Herbalist and Reiki Master. She shares her extensive experience in both conventional and complementary medicine here at Migraine.com and on her own blog, Brain Storm.

 

 

 

So, I saw my psychologist yesterday. I see her regularly to deal with my depression and anxiety in relation to my medical issues. I hadn’t seen her since my appeal hearing and was anxious to tell her I had gotten a favorable decision. She said “Well, you should be a lot less stressed.” I should be. But I’m not. The hearing was just one step in the entire process. Now I have to wait for an “award” letter. This will explain my benefits and when they should start. According to Social Security, this could be anywhere from 30-90 business days. I am now eligible for Medicare; thankfully, but not sure when that will go into effect. I don’t have the money for December’s medical insurance and have a huge rate increase starting in January 2016. I have been threatened with legal action by 2 collection agencies for overdue medical bills. I’ve explained my situation and basically been told that it’s “not their problem.” There’s that empathy I see everywhere. (holds up sarcasm sign) So, no. I’m not less stressed. I’m relieved knowing my situation will improve at some point. Just not sure when and what will happen until then. Oh well, life goes on. Always Keep Fighting! 

migraineagain.com/will-your-migraines-get-better-or-worse-in-the-future/
What Every Migraine Sufferer Should Know to Stop Chronic Migraines Down the Road

“This is my struggle! I just pray everyday and hope someday I’ll be healed!” said Michelle Frazier in response to Tracy H.’s Migraine Journey published on Migraine Again. If only we knew what the future holds. We all want to know when this migraine pain is going to stop — and if it ever will.

Will it get better? Will it get worse? Will my vacation, birthday or wedding day be a migraine disaster? Will I be able to enjoy chocolate or wine or bright sunshine again? Is there any way I can stop chronic migraines in the future? That’s what we want to know. Yet doctors can’t give you a definitive answer, because migraine attacks are generally unpredictable. A new study is finding what increases your risk of progressing from episodic to often disabling chronic migraine – something every migraine sufferer should know.

Common Migraine Life Cycle

According to The Migraine Research Foundation, migraine is most common during the peak productive years, between the ages of 25 and 55. While 1 in 10 school age kids have migraine, The Migraine Trust reports that most people have their first attack during their teens or early twenties. It is rare for migraine to start later in life. Typically, migraine becomes less severe and frequent, and may even disappear, by around the age of 50. For some women this is associated with their menopause, for others it may be retirement or reduced stress.

Our Readers Share: Which Stage of Life Produced the Most Intense Migraine Symptoms

How Migraines Progress Over Time

According to a 12-year retrospective study on how migraines progress over time, 3 of 10 of migraine patients who had been getting 1 to 6 attacks per month reported their attacks had stopped. That’s great news! For a third of us, migraines may be temporary.

The researchers, led by Dr. Carl Dahlof of the Gothenburg Migraine Clinic in Sweden, found that of the remaining patients who continued to experience the headaches 12 years later, most had fewer, briefer, and milder attacks. That’s also good news.

Fewer Attacks for most: 80% reported a change in attack frequency, with 80% of them having fewer migraines and
Depending on your age and how you treat it, migraine can get worse – or much better. (Source: Stewart et al 1994)
20% having more.

Shorter attacks for most: 55% reported a change in duration of attack, with 66% of them saying their attacks lasted shorter periods of time and 34% saying they lasted longer.
Less intense pain for most: 66% said the pain intensity changed, with 83% of them experiencing milder pain and 17% experiencing more severe pain.
Now, the bad news: a small percentage progressed to the more disabling form known as chronic migraine, defined as having migraines more than 15 days a month. The American Migraine Prevalence and Prevention Study (AMPPS) found that 2.5% of the US population suffers from chronic migraine – including many of us. Another study is underway, the Chronic Migraine Epidemiology and Outcome Study (CAMEO), to follow 12,000 chronic migraine sufferers and discover the factors that increase the likelihood of episodic migraines turning chronic.

What You Can Do Now to Stop Chronic Migraines in the Future

According to Dr. Richard B. Lipton, director of the Montefiore Medical Center Headache Center and professor of neurology at the Albert Einstein College of Medicine, in New York City, the CAMEO study revealed “not surprisingly, among people with episodic migraine, the worse you are, the more likely you are to continue to progress. So high frequency and high disability are important predictors of progression.”

Dr. Lipton told Migraine Again that there are several risk factors patients should be aware of that increase likelihood that episodic migraines will turn chronic and disabling. These include:

Comorbid conditions, including depression, anxiety, asthma and rhinitis
Adverse childhood experiences and highly stressful adult life events
Use of opioids (e.g. Fiorinal/Fioricet/Tylenol with Codeine, Dilaudid, OxyContin, Percocet) and barbiturates (e.g. Amytal, Nembutal, Seconal) to treat attacks
Allodynia, the experience of ordinarily non-painful stimuli as painful
Obesity
So what can you do? Patients are often advised to manage risk factors for progression to chronic migraine when possible, such as losing weight, treating depression/anxiety, and avoiding risky medications. And to be patient: many people eventually outgrow them, often in their fifties and sixties. Many women expect that menopause will finally bring relief, but that only happens for about half of migraine sufferers. In fact, surgical menopause actually increases the odds of migraine continuing, says Dr. Susan Hutchinson, Director of the Orange County Migraine & Headache Center, Irvine, CA.

Learning from Each Other

That’s what’s so great about the Migraine Journeys you’ve each shared this past year. Each is different. Each is a poignant real-life, true story of one person’s struggles, lessons and victories with migraine. Each is a sliver of that crystal ball we’re looking for to tell us what our migraine future holds.

It takes strength and a good attitude to tolerate migraine pain every day, every week or every month. Until your pain improves, you can help someone else understand what lies ahead by sharing your Migraine Journey. It’s easy, takes about 7 minutes to answer a few questions, and we don’t use your name to protect your privacy.

Your Migraine Journey could offer a warning, relief idea or comfort to someone else. Can you help someone else stop chronic migraines before they start?

It’s 3:30 a.m. I’m up. I fell asleep for about an hour last night. Couldn’t get comfortable. My back hurts. My neck hurts. My head, as usual, hammering and banging away. Same as last night. And the night before. Painsomnia. That’s what the medical field calls it. I have many other names for it. I won’t share those. I’m so tired. Physically and emotionally. I fall asleep in my chair during the day after taking my meds. It’s fitful and not at all restful. It’s in short periods of time. I jerk awake. Look at the clock. It’s been 15 minutes. Repeat. When the pain is at a 10, I take my highest dose and “pass out.” Again not restful or rejuvenating sleep. I wake up from both scenarios groggy and hungover. I can’t focus well and I’m almost always still in pain. I’m never refreshed. I don’t wake up out of pain. I hurt all the time. This is my routine. I can’t seem to break it. I’ve tried different doses of meds. Tried different combinations. Dr. Pain added sleeping aids. The side effects are too intense. Tried sedatives and anti anxiety meds. Same result. My pain doctor is at a loss. He hasn’t given up and tells me not to either. It’s easy to tell him that I won’t. That I’ll fight. Be patient and hopeful. I tell myself the same. But at 3:30 a.m., it’s hard. I’m in a bad state of mind. I’m exhausted. I hurt all over. I’m stressed. I’m full of negativity and doubt about the future. Is

this my new “normal?!” I hate 3:00 a.m.! “When you just don’t seem to have as much to lose, strange how the night moves.” Bob Seger

Talking to people about migraine can be nerve-wracking. You never know for sure how they’re going to react, but you have a pretty good hunch it’s not going to be helpful or supportive—even when that’s exactly what the person is trying to be. Every once in a while, though, people will surprise you.

Here’s my take on five types of people you meet when you have migraine. Do you have any to add to the list?

1. People who think a painkiller will put you right back to normal. OTC painkillers take care of their headaches in no time and, to them, a migraine attack is just a bad headache. The logic follows that a painkiller is all you need to end your migraine attack. As a concession to the perceived severity of your pain, they might suggest you take four Advil instead of the normal two. If you refuse the painkiller or say you’ve already taken one and it didn’t work, it is usually assumed that you’re using migraine as an excuse to shirk your responsibilities or, worse, are trying to get attention.

2. People who have All The Answers. This person knows someone who has migraine or knows someone who knows someone with migraine. Or maybe they’ve just read an article about someone who has migraine. In any case, they’re sure that whatever worked for that person is going to work for you. If you protest, there’s always another solution. And another.

3. People who think that you just need to try harder and/or have a more positive attitude. These folks are sure that your migraine attacks will cease if you took that medication they heard about or try harder to avoid your triggers or think happy thoughts. They live by the sayings, “hard work always prevails” and “mind over matter.” I presume they get most of their information about migraine from drug advertisements and happy-go-lucky success stories in the news.

4. People who believe you bring your migraine attacks on yourself. Lung cancer is the classic example of this, but migraineurs are subject to plenty of patient-blaming. It usually takes the form of assuming that you’re stressed out and need to relax. If the person has read an article about migraine in Woman’s Day, they might think you’re to blame because you drank a glass of red wine or ate a square of chocolate.

5. People who see how hard you work and believe that you are strong. It can feel like these people are few and far between, but they do exist. They recognize migraine for what it is—a chronic illness characterized by disabling attacks—and see you for who you really are regardless of migraine. These people know you’re not to blame for your attacks and that there may not be a simple fix for you. They admire your strength for enduring and your courage for trying new treatments even after one has failed. They don’t see you as complaining or malingering, they just wish they could do something to help. If you have one (or more!) of these invaluable people in your life, thank them for their support. They make living with migraine so much easier.

Now in her late 30s, Kerrie has had chronic migraine since she was 11. She’s been writing about migraine and headache disorders on her blog, The Daily Headache, since 2005. Kerrie is also the cofounder of TheraSpecs, which makes eyewear for migraine and photophobia relief.

For some it starts with a toothache. For others, a blind spot or creeping numbness in fingers and toes.

Warning signs for migraine and cluster headache are as individual as the debilitating range of symptoms that fall under the banner of this little-understood illness.

“I don’t know what happened in my brain but it’s broken, and I just have to live with it,” chronic migraine sufferer Kathryn Crosby said.

One in 10 Australians suffer migraine, putting it is on par with asthma and melanoma — and it affects women three times more than men.

The burden of migraine on the Australian economy has not been quantified but headache specialist Paul Roland predicts it is immense.

“One of the reasons migraine has such an effect on the economy is it’s very prevalent when people are in their prime — often in their 20s and 30s,” Roland said.

“It essentially means these people are temporarily debilitated at unpredictable times. They may be a chief executive and will become completely unable to work for hours or days without any warning.

migraine1

Kathryn Crosby’s migraines are debilitating.

“Or often it’s parents, and they have to explain why they can’t take their child to that sport event or why they can’t go to dinner with their partner.”

Crosby’s migraines have rendered her unable to work.

“It’s taken four years of my life,” she said.

For Bruce Davis, his migraines were such that he could work, but it was not easy.

“I’d have a dull migraine-type headache and that would generally stay with me during the day at work and wouldn’t go away irrespective of what I took, generally until about 3pm… and I would be left with what I called a bruised feeling,” Davis said.

bruce

Bruce Davis has been getting fewer migraines since he stopped working.

Despite celebrities talking about their migraines, including swimmer Ian Thorpe, radio host Kyle Sandilands and global stars like Kanye West and Serena Williams, Roland said migraine is under reported.

“Despite all the campaigns and celebrities, It is vastly under diagnosed, especially in children,” Roland said.

“Generally, some GPs are loathe to diagnose it and for adults, there’s a sense that there’s no need to report it if the treatment isn’t effective.

“I think it’s the case that people with migraine went to a GP about a decade ago and were told to take an aspirin, which didn’t really work, so they’ve never been back.

“Then in terms of children, kids are long suffering — if they feel unwell, often they’ll just go quiet.

“One of my children has migraine and had I not have been a specialist in migraine, she would not have been diagnosed.”

aimie

Aimie Rigas gets fewer migraines since going off the pill.

Symptoms of migraine range from severe headache to body numbness and palsy right through to nausea and vomiting.

One of the more unusual symptoms, however, is aura or visual issues including blind spots and perceived flickering lights, zig-zagging visions and photo sensitivity.

Another symptom, Roland said, was guilt.

“They suffer a lot not from the pain but from guilt,” Roland said.

“It’s often young women who get migraines, and for many, the trigger isn’t stress itself, it’s the relief of stress.

“This means a common time to get a migraine is Saturday morning, or at the start of a holiday.

“It’s a feeling of letting the team down because you can’t enjoy time with you loved ones.”

For Alex Nisbet, who gets chronic cluster headache, the stress of an imminent attack causes tension.

“The anxiety that it creates for a large proportion of people, brings on depression,” Nisbet said.

“When the pain is at a 10, it feels like there is a vice around your head there is a massive headache, and speaking is really difficult.

“You’re in the fetal position, begging for something. It doesn’t kill you, but that’s when you wish it would.”

alex

Alex Nisbet suffers from cluster headaches.

In Australia, meanwhile, research into migraine continues, often through volunteer donations.

On Monday, not-for-profit organisation Brain Foundation announced a new grant into migraine imaging at the University of Sydney, while the Centre for Clinical Studies is currently recruiting volunteers for two separate studies into chronic migraine including one looking at the effectiveness of a breast milk stimulant.

At the University of Sydney, PHD candidate Maria Aguila last month published findings on a type of acid that was present in high levels in migraine sufferers.

“For such a debilitating condition, very little is known about migraine so this is a big step forward and could lead to better diagnosis and treatment of the disease in the future,” Aguila said.

cayla

Cayla Dengate gets debilitating migraines at unpredictable times.

“We still don’t know what causes migraine, how it starts and ends, or why the triggers appear to differ from one person to the next, but this discovery means that we can now be much more specific with our research going forward.”

For Roland, it’s an issue that requires more funding for research.

“I think it shows something’s wrong in society today in that pain is trivialised,” Roland said.

“If you’ve got a great, big growth hanging off your head, people will do something about it but if you’ve got pain and no one can see anything, it’s not taken seriously.

“My advice for anyone who gets migraine is don’t take no for an answer.

“Keep trying until you find something that works.”

Having a really tough time right now. Trying to stay positive. The Darkness is creeping in and it’s getting harder to keep it at bay. It’s so strong and I feel so weak. I know help is coming, but it’s 3-6 months down the road. I am desperate and out of options. I need prescriptions, dental work, and Migraine treatment. All need paid up front. I’ve maxed out my credit card and can’t obtain a loan. No one to borrow from or to help. I’m so thankful that I won my appeal hearing, but that doesn’t help my current situation. I’ve got bill collectors calling and monthly payments overdue. I know my story is no more special or worthy of help than anyone else’s. I have stayed strong for so long through the pain and depression. It took 4 years to win my disability benefits. It’s hard to keep fighting when your body is battered and beaten down with daily chronic pain. I struggle every day to get out of bed and “function.” I drive myself to doctor appointments and the pharmacy when I can. If the pain is too much, and I don’t feel safe on the road, then I will cancel. If I go, I have to time my meds with the trip, so the effects don’t interfere with my driving. It’s a lot to coordinate just to see my doctor. It’s ridiculous really! Can this be my life now?! Will this be my life forever?! That’s when the Darkness creeps in. At night, when I can’t sleep. When I’m questioning myself and thinking too loudly. It’s like trying to hold back the tide. Impossible. Exhausting. Defeating.

If you can help in any way, please contact me. If not, prayers are appreciated. Bless y’all for your love and support.